T-21 and us

Sharing pictures

2012-01-24T11:48:00.017-07:00

I wanted to come out of blog silence to share some pictures. Another post will follow this one about how I am doing. These were too cute not to share.

Kara with her constant companion a Groovy Girls dolly, all chewed up and ripped up and sans clothing, this doll is her favorite. Scratch on he face, courtesy of Amanda, who has taken to using her nails on all of us lately, ever since Mathias was born, sigh. Kara is holding a bowl to tell me, chips please.
Oh Amanda, it is so hard to get a picture of her looking right at me. Her nose really is not that big LOL, perspective...Look how much she is changing, and is there any doubt of her birthplace, I mean truly, she is 100% Estonian! Lately Amanda has been acting up, pushing people off couches, scratching, pulling hair, and saying uh uh uh (NO) like you would expect from a two year old, wow, she is almost 7!

Meghan is 11, a young lady already, she wanted to model one of the dresses Julia gave her for Christmas. When I say Meghan is 11, I mean she is like all other 11 year old girls; sassy, emotional, rebellious, oh save me, here we go again...

My grandson Mathias, he is such a good baby, and he changes so much every single day! I am lucky enough to babysit him a couple of times a week, and I am loving it.

Mom look at me, MOM LOOK at ME,MOM. Yup, the other dress from Julia, Meghan loves them.

My doggie baby Lola, such a rascal, and I love her to pieces.

Wait, that is Amanda's foot, stop that Lola!

Kara seems to sleep all the time, luckily we can stop afternoon naps for the most part otherwise she is up half the night bouncing in her bed. You can see that she can sleep anywhere, she is waiting for lunch here. LOL

Meghan loves to pose for mom, "Picture of me Mom" is a favorite phrase.

We got Lola so we could train her to be a companion animal for Amanda. Her temperament seems contrary to those wishes, but the two of them migrate to each other all the time. Lola is mouthy, she is getting better, but the puppy trainer did not seem to have much hope for her. She is almost 6 months old. And no, she is not allowed on the couch, oh, bad dog, spoiled brat!

Guess what we had for lunch yesterday?

Losing the will to blog-an update of sorts

2012-01-24T09:10:00.006-07:00

http://www.etsy.com/listing/63390332/photograph-art-landscape-peaceful-beach

Grief and loss, I do not do well with either, always holding on to the emotions longer than most people feel I should. On October 14th 2011 Becky, my dearest friend of 23 years passed away suddenly. Pulmonary embolism following neck surgery. I miss her terribly, she was such a huge part of my life, and I find that people cannot understand the deep friendship we had. I still weep when I realize I cannot share my day with her. I was told that I should "Feel better by now" and "Should let her go". Really? A little over 3 months has passed, so that is long enough to forget a friend who was like a sister to me? That makes me even sadder. Perhaps those who cannot understand my grief have never loved and lost a close friend?

Becky loved the beach, living in Arizona made her sad, and she longed to live closer to the water. She used to say that she pictured the two of us walking arm in arm in our elder years, two old gals sharing a stroll, that image was in my head when I fought cancer, I felt certain that meant we would indeed do that, but life had a different story to tell. I do have a wonderful husband, and I cherish our relationship, still, I feel a woman needs female friends to share her heart with, as they can understand what most men simply cannot.

I found the picture above on-line and asked the photographer if I could share it on my blog. It depicts a woman walking alone on the beach, and that is me now, could I stroll with my children and husband, of course, but I will never take that walk with Becky in this life.

I have so many wonderful reasons to be happy, I do, I have a husband who loves me and does his best to be my life mate (I can be difficult to live with sometimes) I have healthy children, my youngest three are rarely ill, (knocking on wood) and with Down syndrome, I know I am blessed, that they are blessed, not to have one of the many ailments that can and do make people with Ds ill. I am very grateful that my girls have minor issues; alopecia (Meghan), dermatitis (Amanda), uncontrollable frizzy hair (Kara). Of course there is Amanda's autism, which makes her emotional life hard, and our lives challenging, but we accept it is who she is. Still if I could make a wish, it would be for her NOT to have it. Amanda's autism is cruel, it traps her potential, it traps her self-expression, and it makes communication nearly impossible. And yet we refuse to give up!

I have a new grandson, Mathias Owen, he is a wonderful baby, and I get the pleasure of being able to babysit him sometimes. I can already see that his brain works differently than the children I care for daily, his development is right on track. The girls adore him, though Amanda is pea green with jealousy over my divided attention when he is here. I get to hold him and feed him his bottle, I find it feels my heart with jubilation and gratitude, gratitude is my constant companion since having cancer, I cherish every single moment I can love another person in this life.

It is another one of those things people think I should forget, nearly 9 years since I got the news I needed a mastectomy, so I am good to go, right? (Stop playing the cancer card Kris) Cancer is vanquished and I am cured, well, yes, and no. I lost over half my very close support group friends to cancer, so no not gone, gone to sleep sure, but gone forever? I pray it is so. I know more about cancer than a lay person should, how it grows, why and how it spreads to distant organs and bones...and I will leave it at that. People hate talking about the C word, the big C, etc. Scary life stuff, please stop...it is part of my life story, from my mothers death to my diagnosis to the loss of many dear friends. I will not stop talking about it because people are afraid to utter the word.

When I cuddle Mathias and feel his little head against my cheek I painfully remember that Kara and Amanda never had a doting mother or grandmother to love them as infants. When they cried no one came to pick them up and soothe them. When Mathias cries for a bottle, Kara is right there stroking his cheek while I warm it up. I got a revelation last week that she may have done the same in her orphanage since it is her response every time he makes the slightest noise of displeasure. Kara must have given comfort to squalling infants while the caregivers sat by and let them scream. I wonder how many children actually did try to comfort each other from adjoining cribs? I wonder how long it took them to lose their compassion for one another? The older children did not seem to notice when another was sad. And if an older child (4-5 years old) had the nerve to cry in pain or sadness, the caregivers slapped them and yelled at them until they stopped. Yes, THEY DID. After being there for nearly 6 weeks, they did some terrible things in my presence.

The thought hurts my heart, the revelation of what life is for an infant or child without a family makes me weep. The cries and sobs of those babies in Kara's orphanage in Ukraine still haunt me, the image in my mind of workers sitting and chatting, eating sunflower seeds and watching TV while a baby hiccuped and choked on sobs, no expressions on their faces as a baby cried for help and comfort. My stress growing as I longed to run to the back and snatch that baby up, oh how it hurt me to hear his/her pain, Kara was also visibly upset when that certain baby cried, her lower lip protruding into a pout, her eyes welling with tears. (I got to see him/her later, a little one with CP, bald, with such an engaging smile, the only young infant in Kara's groupa.)

That scene played out nearly every evening I visited Kara. The older workers emerging from the back rooms scolding the younger gals; those same four women sitting and ignoring the children, the smell of them, their body odor, of clothing left unwashed for days, sweat, and stale cigarettes, the sheen of oil on their faces from the heat of the room. All embedded in my memory. One of them could have held that crying baby, but none seemed compelled to care. I was told by our facilitator that they resented how poorly they were paid, and did the minimal, and they felt that they should not give attention to the babies, that the sooner the infants learned they should not expect it, the better...some babies gave up easily, other stronger willed children kept trying.

Can you imagine, crying out in pain and fear and being ignored day after day after day, the only time someone held you was to change your diaper and to feed you? Both done without that person speaking to you, done in a assembly line fashion? Never having you forehead stroked or a gentle kiss placed on your soft cheek?

I know that my two adopted daughters were forever damaged by that same negligence, and no amount of love and care will fill the void of their first 3 years. It makes me wish that the hearts of their birth parents would have been strong enough to disregard societal convention and keep their babies. It has been four years since I was in Vorzel for 42 days, and my grandsons crying transports me right back to the orphanage every time, my mind does not register the passing of time in days, months and years, sure I can mark time off a calendar, but time means nothing to my injured heart and conflicted memories of that time.

When I am sad, my mind plays over the other times I felt sad, angry, scared or confused, I contemplate those experiences and try to reconcile them, try to forgive the people involved a little more, I can hold grudges for a while, it is not something I am proud of. Life is a process, and I am terrible at compartmentalizing, I suppose if I could place every emotion into a neat little box I could just forget the past, but everything blends together like sand on a beach, each experience shapes me into a different person day by day, for better or worse.

I have often heard time heals all wounds, I beg to differ, and perhaps some wounds should not mend completely, lest we forget the reasons we are living. I have always felt that we live to love and protect one another, to lift people up when they fall, and to stand up and try to stop grave injustice. Oh how many times was I called an idealist or a Pollyanna, etc. I find it curious as I am not blind by the woes and evils of the world, and I am not insanely optimistic either. What seems to irk people the most is my need to make them aware of those things, to wake them up and make them CARE about something other than their newest TV or car...

If we forget our experiences whether they are painful or joyous, we are nothing but unconscious souls existing in a life with little meaning. I would rather be fully aware of everything life brought to me, painful or not, and I learn and grow more from adversity, though I do not wish to suffer through it, I feel it helps me have more empathy for others who are struggling too.

So I go on, embrace what I am feeling, I wonder how Becky's loved ones are coping, I wonder if they feel the same intense void in their lives without her, I am sure they do. I think all of us want to leave a legacy behind after we die. Yes Becky had her own woes and challenges, but it never stopped her from showering the people in her life with unconditional love. Unconditional love is a rare and precious gift, and I was lucky to be the recipient of it.

Saying goodbye too many times

2011-11-11T18:21:00.003-07:00

Elizabeth Ann: 11/29/61-10/14/11 Beloved Daughter, Sister, Mother and Friend.

On October 14 my dearest friend Becky, who was known as Elizabeth to most people who knew her, passed away suddenly. We have spent the past 23 years sharing our lives with one another. Kindred spirits in many ways, complete opposites in others, but we loved each other enough to accept the differences. Sure we had bumpy roads in our journey of friendship and sisterhood, but we overcame them.

We talked on the phone nearly every day for the last 10 years, at first because she no longer lived close enough for a face to face visit, and then because of work, illness, pain, children, sometimes all at the same time!

There is a void left behind when someone you love is gone from your earthly life. Every single ring of the phone reminds me it will not be her because she is gone. When I have news to tell her, she is not there to share it with. I will never hear her say "Hi Kris, It's Becky" on my answering machine, taking for granted that I could call her back later. Sometimes there are no laters.

Becky was a caregiver with an enormous heart and a tremendous love for Jesus. Her job placed her with people society ignores and hopes to avoid; when we met she was an overnight nurse for a woman in a coma, when she moved away she worked for patients in a hospital for psychiatric illnesses, when she returned here, a job with developmentally disabled adults in declining years, medically fragile souls. She adored them, and watched over them with care and expertise.

She was one of the few people in my life that truly loved Meghan, Kara and Amanda. Her love for them, without conditions, made me care for her even more. Unconditional love is rare, those of us who are loved that way by a friend are unbelievably lucky.

Since Becky passed. one of the church hymns from my youth goes through my mind again and again. Becky was a Born Again Christian, we differed in our belief systems, my being raised LDS conflicted with her religious POV, we had many discussions about it. We both prayed faithfully for one another. :)

I was very sad that hymns were not sung at her service, she listened to her devotional music more than any other kind. This is for my dear friend, even though it is an LDS hymn, I know she would understand:

I Stand All Amazed
Music and Lyrics by Charles H. Gabriel

Arrangement and Additional lyrics by Sally DeFord

I stand all amazed at the love

Jesus offers me

Confused at the grace that so fully he proffers me

I tremble to know that for me he was crucified

That for me, a sinner, he suffered, he bled and died

Chorus:

Oh, it is wonderful that he should care for me enough to die for me

Oh, it is wonderful

Wonderful to me

I marvel that he would descend from his throne divine

To rescue a soul so rebellious and proud as mine

That he should extend his great love unto such as I

Sufficient to own, to redeem and to justify

(Repeat chorus)

I think of his hands, pierced and bleeding to pay my debt

Such mercy, such love and devotion can I forget?

No, no, I will praise and adore at the mercy seat

Until at the glorified throne I kneel at his feet

I stand all amazed at the love Jesus offers me

Secure in the promise of life in his victory

Thus ransomed from death I will live to my Savior's praise

And sing of his goodness and mercy through endless days

*******

I am not very good at letting go and saying goodbye, especially not to a beloved friend. These past two months I have had to say goodbye to too many wonderful women, but losing Becky took a piece of my heart.

http://www.journeyofhearts.org/kirstimd/please.htm

Make sure you treasure your friends and loved ones, this lifetime is truly over in the blink of an eye. Call someone you have not talked to in a long time and tell them you love them, visit an elderly relative and take the time to listen to their stories, do something to show someone you love and care for them, do it for Becky. I do not know anyone who was a better listener than she. Listening is such a gift.

I am grateful the last words we shared were I Love You.

31 for 21, See my child, not her syndrome

2011-10-12T09:08:00.002-07:00

I took my oldest to the ENT
He looked at my daughters chart
He said those adenoids and tonsils have to come out.
I said, but doctor, you did not look in her throat
He said, everyone with Down syndrome has to have that operation.
I said, please look at her tonsils,
He looked and said they were not so bad.
I shook my head in sadness.

I took my sweet daughter to the orthopedic doctor
He looked at her chart and said
Of course, she has bad ankles,
She has Down syndrome
He did not look at my daughter
I said, but doctor look at her feet,
I think she needs orthotics,
He looked and agreed with me,
I dropped my head and sighed.

I took my two daughters to the GI doctor
He was in a hurry because he had to get to the hospital.
He looked at their charts and asked me what was wrong
I told him one was spitting up and the other was percolating
He said most kids with Down syndrome have GERD and
He threw scripts at us as he rushed out the door.
He did not look at my daughters or order tests.
I shook my head in exasperation

Dear medical professionals, when you look at my daughters
Or see their diagnosis on a chart, do not assume
That just because they have Down syndrome,
They automatically have every ailment associated with it.
Look, listen, feel, do tests, and then tell me
What is wrong with my child?
My daughters are people, not a syndrome,
They deserve the same medical care that you would give any other child.

While I have your attention, when I come in with my child and
tell you something is wrong, please listen,
I know my child better than you do.
Maybe because I actually LOOK at her

Kris Levario. 2008 Copywritten

Not again, in memory of a sister survvior

2011-10-10T19:24:00.002-07:00

In the world of cancer survivors, something happens when you fight the fight with others, you develop a bond like no other, I imagine soldiers would understand that bond. In support groups, you can talk about topics your family may not want to hear about. Every single woman I have known with breast cancer wanted one thing; to survive. All of us went though amputations (yes mastectomies are amputations) or lumpectomies, got poison dripped through our blood streams or were burned by daily radiation for weeks on end, many had chemo and radiation. We did it to survive cancer, most of us were NED after treatment, some for many years, some for only weeks.

Those with metastasis had ongoing cancer treatments for years, it weakened bodies, stole away jobs, but only rarely did it weaken the spirit. Each woman who marched the hard march of stage 4 breast cancer did it with resolve, strength, and will to live.

It is the message we all hated to get; "I saw the oncologist today, the cancer is back" the floor dropped out beneath us and we felt fear for our dear friend, we know the slow march had begun, very few people beat stage 4 breast cancer. A minuscule amount maybe, blessedly lucky women. So we all know it is only a matter of time, even though we also pray and pray for remission. None of us give up on each other, not even in the very end, I think we all pray for miracles.

So it hurts when we lose a friend, hurt does not even describe the shock and pain, we are devastated, angry, forlorn... Not again, not again, not again, not again.

I and my sister survivors at BCSN lost another dear friend today, she has not been a presence the last year as she has been ill , in and out of hospitals, but steadfastly working at her job as editor of a newspaper. Kathy was the first person to welcome me as I timidly introduced myself to BCSN in 2003.

Kathy once said to me:

I have to reply to the comment that God only gives you what you can handle. It's true but I have a friend who said, and I don't if she was repeating a saying she'd heard or what, but she said: I know God only gives me what I can handle, but I wish he didn't think I was so competent. Hang in there. Kathy

Kathy was more than just a good friend to all of us during those first years, she was a advocate for survivors, and shared her journey weekly in a journal for her newspaper. She was quick to offer support and a shoulder to lean on to our group members. When her cancer came back she never once complained, she just faced it head on with her customary determination. I was amazed by her resolve and strength.

When I told our group we were adopting, she was the first person to donate funds in support of our decision, and then followed that with package after package of books she bought from estate sales. She hoped we could sell them and make more money towards our adoptions. That was what she was like, always lending a hand, always the first person to send money for flowers for a sister survivor who was declining. I personally felt desolate when her posts fell off as she got weaker from treatments. In an online group that is never a good sign, and for those survivors who communicate via emails, it is terribly difficult to accept, because you know, this is it, the beginning of the end.

Kathy, I wish I could have talked to you to tell you how much you meant to me, I hope you already knew, I will miss you forever my dear friend.

http://www.dailyrepublic.com/news/fairfield/veteran-fairfield-journalist-lecluse-dies/

Wow, I guess we are not doing so well-31 for 21

2011-10-09T22:17:00.003-07:00

I meant to post daily, somehow with three kids at home all day and a new puppy, I just cannot do it.

Today Tom spent half the day moving the fallen tree to the front yard for bulky pick-up.

I took Lola to her first puppy class, she snapped at the instructor over and over again, which kind of made me feel relieved that even a trained professional could not stop her easily. Although I can see I have a lot of work ahead of me. At least she is inhibiting her bite now. I learned that even though I am fine around Lola, a room full of puppies brought my allergies on full force and I have been miserable all day.

Kara is feeling ill, she has been sleeping a lot and has a runny nose, I am hoping it is seasonal allergies.

Amanda's arms are almost healed from Lola's love bites, though she continues to put her hands in Lola's mouth, so another thing to work on.

Meghan is getting really good at singing, she is learning lyrics to most of the songs she loves, and I just love hearing her sing them. Right now she is loving Tangled. Last year, when we were getting ready for Meghan's IEP review, the school speech therapist called me, I was telling her how frustrating it can be when Meghan refuses to use her words to communicate, she told me, if she was not talking well at age 10, she likely never would, well, I am glad to say, she was wrong, Meghan's verbal speech improves every day. Note to professional, be careful about making proclamations like that. Additionally, Meghan F2F speech therapist A did not agree with E, the ST at the school!!

Friday was Julia's 19th birthday; we went to Chicago-not the city, the musical, with Julia, her boyfriend and two of her friends, our son Fred, Meghan, Kara, and Amanda, and we were excited that A, the girls speech therapist, could come with us. Brian was playing Billy Flynn, and we were all excited to see him in another show. The little girls did pretty well the first act, but the second act Amanda began to do her Pilate's legs, she does it when music makes her happy, the man in front of us was not pleased, he turned around and told me "You know some of us are trying to enjoy the show". Tom grabbed Amanda and left, Kara began to get squirmy and wanted to sing along with Razzle Dazzle, so I picked her up and left with her. Meghan stayed with A, and I just hated to leave her, she was unusually shy that night. While we believe that our children deserve the chance to learn to be good audience members, but we do not want to ruin the show for others. Though I admit, I had an Ally Mc Beal moment where I envisioned smacking the arrogant man upside his head. Oh yes, and we knew him, he realized we knew him and blanched, but too late, you blew it sir...I was in tears though, I am so tired of people treating our family this way. The girls were not horridly bad, just mildly annoying. sigh. http://studioconnections.net/2011/09/chicago/ if you live in Tucson, I hope you can catch the Chicago. The cast is great, and I know Brian would love to see you there.

I am hoping for a quieter week this week, the little girls have one more day of fall break and then we are back to schooling. It has been nice not to have to log on and do the work for a few days.

B is also for Buddy Walk

2011-10-02T23:46:00.005-07:00

SANDS (clickable link) Is hosting the Buddy Walk again this year.

This year our family will host a booth for Reece's Rainbow. We hope to raise money locally and also raise funds for The Voice of Hope Fund for Reece's Rainbow. You can donate to either or both, all funds go towards helping individuals with Down syndrome.

31 for 21 day 2-ABC's of Down syndrome-B=Be in the moment.

2011-10-02T21:29:00.009-07:00

Do you ever drop everything and dance with your kids, or belt out a song with them? We do that here all the time during our school day. Meghan loves to sing, and being that she is not a critical person, I sing with her...I dance with Kara, I bounce Amanda on my knee whenever she wants me to, we all live in the moment every single day. It is one very important lesson I learned over the years, to just enjoy life.

Our house does run on a routine, but it is not rigid, though the girls expect things to progress a certain way, and they get discombobulated if we alter it too much, it does not stop them from giggling and dancing with Mom. Breakfast, lunch, and dinner need to be within certain times, and they have to do their schoolwork the time and the same way. Still, I have never seen anyone enjoy every single second of their day like my younger three do. If I put on music, they are up and dancing. If I put on their favorite movie they are smiling and excited, even if they saw it 5 times that week. They are just happy with life. They can also get storm cloud angry just as fast, but children are like that.

Eric and Melissa, it was a beautiful wedding. We welcomed a new daughter to our family, and a new granddaughter Megan.

Meghan dancing at her brothers Eric's wedding.

Kara on the dance floor with the streaker, little guy kept taking off his clothes LOL

Lola running at me, she is FAST.

Lola stalking the poor cat

We got a new puppy, she is a Lab and loves to nip and chase the girls, especially Amanda. Kara and Meghan just walk away from the puppy, and they are left pretty much alone. Now you or I, we would just stay away from a nippy puppy, but Amanda, she sees the dog and gets happy and tries to play with her. Someone needs to tell Lola in dog language that Amanda is not another puppy and does not have fur like her that protects against puppy teeth...Lola is learning, she is only 2 months old. The dozens of chew toys only distract Lola for so long. The Kong toys are helping, Lola spends a bit of time in doggy time out.

Unhappy Amanda, she wanted out, but kept sitting in the middle of a busy dance floor. If you click on the picture, you can see the scratches from puppy teeth.

31 for 21 day 1-ABC's of Down Syndrome-A

2011-10-01T09:01:00.004-07:00

A is for acceptance, advocacy, adoration, adoption, and of course the other A word which I will save for another day.

We are birth parents to almost 11 year old Meghan (and Fred, Terry, Eric, Brian, and Julia...) Funny, most people assume we adopted Meghan because we are older. Ya know ancient, in our early 50's, yikes. I hate hearing "Are you their grnadmother". OUCH

We did not have a prenatal diagnosis, we did not seek one. We had 5 children born without any issues, so why should our 6th have any? Except somewhere in those seconds during her earliest cell division, her 21st chromosome got sticky and made 3 copies instead of 2. So in that 11th week of pregnancy when I got the surprise announcement that I was expecting, Meghan was already a baby with trisomy 21.

When Meghan was born and it was obvious to everyone from her facial features, hypotonia, and heart murmur, that she probably had Down syndrome, with her birth we learned the first A word. ACCEPTANCE.

For some parents acceptance takes a long time. It is not because we do not love our child, though I am sure there are cases where families simply cannot, not in the enduring way a parent loves their children, and those parents give their babies up.

We accepted and loved Meghan on sight, but I felt very sad and guilty about her being born with a condition that would mean the world (which is cruel enough for most of us anyway) would not accept her as a human deserving their respect or even their notice.

I think it took me a few weeks to stop wallowing in sadness and to finally stand up for my daughter, the end of the month she was born, when the doctors in the teaching hospital wanted to use her for their very own Down syndrome specimen, AKA lab rat. Cruel in their study of my daughter to the point of dehumanizing her. There was where the second A word came into play: ADVOCACY.

I simply put a stop to their very unkind scientific explorations. Test her for this, oh gosh, lets do this invasive test on her, how about this one...how about no. I told them, that was it, no more testing, we were stopping all the nonsense of trying to find abnormalities, if she presented with specific health issues, we would test, but not until then, period.

Being Meghan's advocate was and still is a full time job X3, besides caring for her like any mom would a tiny newborn, with cuddling, rocking, numerous diaper changes, and sore nipples from breast feeding. I called (being a stay at home mom at the time, my husband had a FT job) the agency to come here and determine she did indeed have a disability that allowed her to be served under DES/DDD. Next came the services coordinator Maria, and then the therapists, OT and PT at first. I did all the paperwork, was here for the home visits, was therapy Mom and I watched Meghan change and grow and learn with feisty determination. Which brings me to the next word ADORATION.

Meghan had such a strong spirit, she was funny, loved to be in the middle of everything our family did, and she loved us all so much. My love for her grew to adoration. ( Truth is, I adore all of my children)

Cancer entered our lives when Meghan was 2 years old. It was bad, I do not recommend a cancer journey to anyone...but I am always grateful for the miracle of my continued life. I can vividly remember praying the day I found out, "Please God, I cannot leave Meghan behind" for though the thought of leaving any of my family behind crushed me, I knew she may need me the rest of her life, but my other children would build lives away from me, with spouses and their own children. Meghan could have some of those things, maybe, she was so young, it was impossible to tell, but she would not be able to without some support from me, her advocate and her mother.

Years ticked by further separating me from the diagnosis, tests showed I remained NED. I was back working for a new fitness center after being dismissed from my job of 17 years for leaving too often for surgeries. I had a sense of "Now what will I do with my life?"

Then I learned something heartbreaking; there were countries that sentenced their citizens with Down syndrome to institutions for life. I found Reece's Rainbow in July of 2006. I do not think I stopped crying about those haunted faces for months, going back to the site again and again, and then the ton of bricks hit me. That brings us to our final A word for today ADOPTION.

Yes, the first time I saw the toddlers, I cried, I looked at Meghan and then back at them, and just cried. Deep down I knew, if people in America could get away with such inhumane treatment, they would do exactly the same thing, and we have before, while we should protect "The least among us" we often fail one another. The thought of adoption just did not occur to me, we are ordinary people making a modest living. Rich folks adopt, right, people who are childless adopt, but not people with 6 children of their own, do they?

So enter the ton of bricks, and my very own "Wait, maybe we CAN adopt too" moment. It was quickly followed by paralyzing fear. $?$?$? what about the money, who has that much money? I looked at the paperwork needed, a very long list of things-get a passport...clearances from police agencies (Would that speeding ticket I got in 2002 count against me?) I kept thinking that every journey begins with a single step, so just take the step, do it, just do it. Finally after a lot of soul searching I got the courage to send that first email asking about Eve. She was in Eastern Europe, and one of maybe 12 children, RR was new then. I got a message back, Eve was likely Evan, so I searched again and found a bright, happy girl with sparkling eyes who had a committed family the weeks before, but no longer did. What about her then? After all that I had to do the second hardest thing, I had to tell my husband what was in my heart...Thus began our adoption adventure!

We did not adopt the first girl we gave our hearts away to, nor the second, instead we brought Kara home on a blind referral. Silly sweet, wonderful Kara, and 5 months later, our equally sweet and very wonderful Amanda came home too.

So the answer then was yes; parents who are not really young, and have 6 children can adopt, speeding tickets do not count..and sometimes miracles happen.

In memory of Kim

2011-08-30T14:13:00.003-07:00

Kim was a member of an on-line support group I moderate. She has been my good friend since 2003, when we shared the sorrow, the joy, the pain of loss, and the celebration of living and life during our cancer journeys.

This morning we lost Kim to cancer. She was respected and loved by so many of us.

I made this image from a picture she shared with us.

I hope she is galloping across the clouds on her beloved horse, free of care and pain forever.

End of summer update

2011-08-01T18:44:00.003-07:00

We have had a quiet and hot summer. We chose to hunker down and just spend the time relaxing as a family.

We have some very exciting upcoming events, in no particular order:

We are expecting our first grand baby this November, Terry and Anna are going to be parents!! We are thrilled. (oh, and the baby is a girl)

Eric and his fiance Melissa have set a date for their wedding and they will become man and wife in September. They are just perfect for each other! We will also have a new granddaughter; Melissa's daughter Megan. Which is also so exciting to us. She is a wonderful young woman.

Julia got a puppy, she named her Sheba and we are all having fun playing with her (and housebreaking her, oh joy!) Julia is taking exams to get ready for community college!

Fred, our oldest, is saving to buy his first home, a very exciting prospect, but daunting. So much to think about!

Brian is in two plays this summer-fall, Sweeney Todd and Chicago. He is so busy I am not sure how he does it all. Sweeney opens next week, if you live in Tucson, you have to see it, it is going to be amazing TICKETS FOR SWEENEY

Amanda is now a 100% self-feeding girl. We announced to a few friends, and they looked at us like we were making a huge deal out of something all kids do, but they just do not understand the struggle we have had getting her to hold a spoon. She is so awesome sitting at the dinner table spooning the food into her little mouth. She spills a lot, but this is such a huge step for her!

Kara is growing so much, she grows out of sizes in 4 months, I have never had a child grow like she. She is going through a stage where she hits herself in the head when she gets frustrated. We spend the day telling her to be nice to herself. I wish we knew what was wrong, it hurts us when she does that to herself, but she cannot communicate well enough to tell us why she is so upset.

Miss Meghan is growing up on us, her shape is changing into a young woman's and we just are not ready for that to happen, I have to be honest and say, I find it kind of unfair that she is delayed in everything but that. She is so much like a 6 year old, of course she is also a 10 year old girl and has the life experience of a 10 year old. I just wish puberty would go away for a few years and let her catch up to it, you know?

I have been mentally gearing up for another year of home school for the youngest girls, they go to on-line charter AZVA, so I do not have to buy curriculum, but we need to get the work area cleared off. School starts Wednesday. Kara and Amanda are in 1st grade and Meghan is in 5th. They are not doing the work from those grades, they do the work their IEP specifies, I am hopeful that Kara and Amanda will be better able to complete some tasks this year, last year they were still so behind developmentally, but both have had some good progress this summer in self help skills, so fingers crossed.

Tom will be back at his regular job in a couple of weeks, the school year for him starts a little later than AZVA. As always, we will miss him being home with us.

I will not be sorry to have the heat of summer behind us, the monsoons that used to drench our city daily barely produce any rain now, we had three nice storms and nothing, all it does is raise humidity and make us miserable with our evaporative cooling, Fall, please hurry!!

Pictures

2011-05-04T01:04:00.008-07:00

Julia in her beautiful prom dress, she looked so grown up and lovely Meghan, our pretty princess, Meghan is not cooperative about pictures these days

Miss Kara , she is growing so fast

Kara and her post smile because the camera took too long to click look, isn't she beautiful?

Pretty one of Amanda,

Playing with one of the dollies

I Beg your Pardon?

2011-04-17T12:20:00.009-07:00

I am watching my husband get Amanda ready to go bye-bye, she is so excited she is hitting herself on her head; she went from that do saying dida dadi da, to grinding her teeth, to rhythmic breathing, to dropping her head to trying to scratch my husband. She is excited to be going someplace with her daddy. she is tugging at her shirt because it is too short. My husband is calling her over and over again to get her attention to change that shirt, she is tapping her fingers together and ignoring dad. She is a character, we call her a stinker a lot, she is playful and mischievous, and a lot of her characteristics we attribute to her autism.

Earlier I retrieved her from the back yard where she sat head hanging down, all alone, grinding her teeth. We have to engage Amanda constantly or she does get lost in her head. When she is engaged with another person, she is different, and she loves attention. She also does not discriminate between family and strangers and will jump into anyone’s arms. Orphanage life changes children a lot; especially true if that child also has autism.

3 years of constant work have helped Amanda a lot, but she continues to revert back to her self stim whenever she is stressed.

Friday I took Amanda to a university speech and language center for her IEP speech evaluation, since we school at home via on-line charter, she cannot go to public school here to get evaluated for her IEP. They asked all the same questions all therapists do, they did ALL the play skills tests (they ALL do the exact same thing in every single evaluation), and they interacted with my sweet girl, observing at how she ate food, licked a full of additives, artificial everything sucker (no, we do not give our children garbage like that), and opened her mouth to look in with a flashlight to see the upper palate and to make certain she did not have any septum's (because of course no one who has examined her before them checked for that) What, do I have a tone? You betcha, why you ask, because honey, I am MAD as a HORNET.

They did and said quite a few things that astonished me, but this one statement spoke volumes about how they felt about me (maybe all parents): “Did someone tell you Amanda had autism, or is it something you just think is there? Maybe you should leave it off when you write down her diagnosis?” Yes, they most certainly did say right out that I was making up something about my daughter. Does that mean they thought I was lying? You can read about the day we got her diagnosis here They could not see any autism, wow, amazing insight, really…. though they sure did call my sweet little Amanda a Down syndrome girl repeatedly, even used the endearing term "Downie" when describing her to one another. This People First language mom was livid just by that, BUT when I tried to talk; they ignored 80% of anything I had to say. Yes, even turned their backs to me and made certain I could not see my daughter while they hovered menacingly (to Amanda’s perceoption) over her tiny frame. I was thinking “What in the hell is wrong with these women?” And the anger was beginning to build up.

“She has Down syndrome, acts like a child with Down syndrome, but there is no autism there. She is just a normal child with Down syndrome, period” Um, what were this woman’s credentials again? Was she a developmental pediatrician, a developmental specialist, autism specialist? A post institutionalized behaviorist? Honestly as far as I know, she was a speech pathologist. At the end of all of this verbal ill-treatment I did end up raising my voice and telling her very loudly what I felt about her and her professionalism.

I made it clear to all of them that they could not possibly get close to being able to tell me who my daughter is after seeing her 1 ½ hours. It was a mere glimpse of the true person, and how dare they assume they could. At which point much backpedalling ensued. “Of course we can’t know everything from this”, “Of course you know her better”, and my favorite “It is commendable that you and your husband took on these girls”. They had not read the paperwork I filled out about Amanda, all they knew was what they saw.

I feel like I need to say something about this subject before I continue with the rest; I truly dislike being commended for adopting; I am not one of those people who think adoption is a mission to save the world. We did not rush into adoption to be glorified; adoption to us is about providing a home and loving family for a child who had none. It is not about getting praise, we are so incredibly grateful to have had the privilege to bring two wonderful daughters home to share our lives. THEY do not owe us anything because we did. Imagine the feelings an adoptee would have knowing their adoptive parents expected gratitude for their “rescue”?

So moving forward, it was the worse thing she could have said to me. I got home and I did what all good moms do, I called Amanda's pediatricians office to report that apparently my good parenting and all her therapy and such MADE HER AUTISM GO AWAY, like magic, just gone. The nurse was aghast, she likes me, knows me, and she likes our girls, and she was so upset that someone would accuse me of making a diagnosis up. I asked her if we could go back to the developmental pediatrician for a follow-up. WHY? So I can get that new report and send it to the speech clinic, oh and so I can share with the developmental pediatrician Dr T that someone thinks her diagnosis is incorrect....

I can remember sitting in Dr T's office in 2009 while she did the second autism evaluation of Amanda, and after a couple of hours of questions and observation she said that Amanda had many characteristics for autism. I had tears in my eyes, I was upset, I still am, my little daughter has had so many issues to overcome, to fight against, and it was so unfair that she had autism too. “Please no, not that, please God no”; that is what I was saying in my head. It hurt to hear it, we hoped it was institutional*, we hoped some of her behaviors would go away (with love, therapy approaches, and TIME) some have, but they are not GONE, they are diluted.

Imagine you have some white icing and you drop red food coloring in it to make it bright pink, and decide you want it white again. No matter how much white icing you put into that pink icing, it will never be white again. Even though we work and work on Amanda's autistic behaviors and help her to escape the self-stimulation cycles that she can get trapped in, it does not mean they do not come back with a vengeance when we stop. It is a constant effort on our part, always hoping that eventually Amanda can learn to self-correct some of her behaviors that make it hard for her to do other things.

Amanda was happy and engaging at her appointment, she jumped from lap to lap and smiled and played, even sounded like she approximated some words; Ap for Applesauce. They seemed very excited she was trying to talk, but Ap is something Amanda chants to when she rocks when she is upset…and the they said I should assign meanings to these utterances so Amanda can begin to associate her random muttering to true words, umm, OK, something to think about. (One of the only helpful things they said to me)

Outwardly Amanda was the way we wish she could be all the time, except that even though outwardly she seemed happy, she was grinding her teeth and rhythmically breathing showing that inwardly she was not doing well, something these astute professionals completely missed. Those are her signs that the stress of the activity was getting to her. Something I am attuned to because I spend all day every day with her and know her better than any other living person on this planet, including her father. Despite that I was dismissed and treated like someone who did not matter one bit, incidental to Amanda's growth and development.

I walked out with my tiny daughter from hypercritical office to blissfully put her in the van and drive home. Thoughts were racing through my head, I was trying to digest what was said to me, and how I felt about the behavior of the three evluators. I made a vow that we would never set foot in that office again.

My mind is still reeling with everything they said and did. “Are you getting her teeth worked on” after I had just said when she came home from Estonia she had 7 pulpotomies and 4 fillings and 7 crowns placed on her teeth. Proof they were not listening to a word I said. “I noticed that she hates things close to her face, obvious she cannot see up close, but I am not an expert on vision issues…so I don’t know who you could see for her vision”….

Amanda hates things in her face, it was the reason why she used to scratch people, and she left plenty of scratch marks on all three ladies, they had red welts all over their necks and arms. BUT it was not because of autism, it was her vision. I would be ecstatic if I thought Amanda could grow out of autism, or hey, lets add Down syndrome too, because some folks call it a disease, and can’t most diseases be cured?

Oh, what, did you call me snarky? Well maybe I am. I am tired folks, in one breath I am praised “For all I DO for my girls” and right on the tail end I am battered and belittled because I am not doing enough. Which is it then, too much, too little, truly, what parent wants their parenting put under a microscope? I wonder if this woman who sat in haughty judgment of me wants her parenting put under scrutiny. I would love to tell her what I think about her professionalism, or complete lack thereof. I hope their scratches heal without infection, better put some salve on them.

A must watch -Down syndrome Awareness

2011-03-19T10:15:00.000-07:00

Spread the Word to End the Word

2011-03-01T21:11:00.005-07:00

I am sure I have said it before, I know most of the family has, because it is one of those words that we got used to hearing and accepted as a harmless word, and then Meghan came into our lives and saying it always made me look at her and feel shocked at myself. Here was my precious baby girl smiling up at me, and I was saying I was retarded for forgetting to put salt in the soup? What was I thinking? How could I say such a insensitive thing? Of course I never thought it pertained to children like my daughter, I was thinking more in terms of myself being a mindless idiot who did not use their brain...oh my word, how horrid of me. I am not saying that the habit of using that word left immediately, because that would be a lie, it was hard to break myself it I am rather ashamed to say. It never failed to make me blanch of feel horrified with myself though.

It is a plain fact that Meghan was born with intellectual disability, she learns slower than you and I and she has to repeat things over and over again to memorize their meaning. When we did paperwork for her to enter Kindergarten they gave her a label which included the word retarded. (Thank goodness Rosa's Law* changed that label)

When Kara and Amanda were born, their country also had a label for them to describe how slow they learned, it was oligophrenic, which means small brained, or mental retardation. That diagnosis is why their parents signed abandonment papers and left them in the hospital.

A child born with Down syndrome typically has a degree of cognitive disability, most in the moderate range, some better, some worse. This issue contributes to a 92% abortion rate when there is a prenatal diagnosis of Down syndrome. People are afraid of having a child who will not learn like average children. How will they ever be a rocket scientist, a doctor? President?Perfect?

I think we can all agree that when someone uses the word retard or retarded, they are thinking about children like mine. Most children will poke fun of kids who learn slower (or are different in any noticeable way), and they learn rather quickly that teachers and parents do not get too upset when they use the R word. After all, they hear mommy saying how retarded she is for forgetting to put gas in the car, or they hear daddy saying his boss is a retard. They hear it in movies and TV and no one seems to think a thing about it, after all, it is only a word...ridiculous that the PC police are getting all in an uproar about it, isn't it? NO, not to me it isn't. Words hurt, period.

It is not only a word to my husband and myself, it is a derogatory term that diminishes our three youngest girls humanity. That one word can be the difference between typical children accepting mine in an inclusive setting or laughing at them and making them feel left out and sad. I cannot count the number of times a mother led her children away from my girls saying "Leave them alone honey, they are different". I think the use of the R word in our culture contributes to that attitude.

When we make it OK to use the R word to say we feel less than graceful or when we make a mistake that embarrasses us, we are telling everyone with intellectual disability that they are less than perfect, and we see them as less than ourselves.

Think before you open your mouth, you never know who may be sitting across from you in the movie theater, or behind you in church or school, to you it is just a word, to them it is a dagger to their heart.

*S. 2781, the "Rosa's Law," which changes references in many Federal statutes that currently refer to "mental retardation" to refer, instead, to "intellectual disability"; and

Wonderful interview with Temple Grandin

2011-01-05T11:48:00.002-07:00

Amanda and Kara are both non-verbal, neither are vacant children however, autism spectrum mixed with Down syndrome and post institutionalized behaviors, well, it is never boring here :o) Kara was not diagnosed with autism, she does exhibit many of the behviors, Amanda was diagnosed with autism a year after we adopted her.

Bring on 2011

2010-12-31T23:44:00.003-07:00

It has been a rough year here, I am sure other families can relate. So yes, I am more than happy to see this challenging year behind us.

I remind myself that each hour we have in this world is a gift, but this year, oh, what a tremendous struggle, mostly financially, that is what happens when wages are frozen but prices of everything else go up and up, and I know we were not alone in this. In many ways it has been better for us than for others.

I am grateful our children have been relatively healthy this year, other than some colds and tummy flu's, we have had a good year.

I am grateful for the gains our three youngest have made in their developmental skills.

I am grateful my husband had a job, budget cuts have threatened his job for two years. 2011 will be another struggle, more cuts in store for our school budgets, prayers are appreciated.

I am very grateful for my continued remission from cancer.

I am grateful for the new daughter I gained this year via our sons Terry's marriage, we Love you Anna.

I am grateful for good friends, especially those who helped us make Christmas special for our little girls.

I am grateful for older children who are giving and caring and understanding.

I am grateful for the food we had to eat, the home we had to live in, and a running vehicle in good condition. More than many people have throughout the world.

I am happy for have all I have, for the blessings of my family and friends and wish everyone a wonderful 2011.

Who is THAT girl?

2010-12-16T07:45:00.003-07:00

Or should I say, THOSE girls. Meghan, Kara and Amanda are growing! Yesterday was OT Wednesday, that is when M comes by to work with all three girls on fine motor skills (gross motor mixed in too). M looked at Kara and said; "Kara are you taller?" and by golly, she sure is, I noticed her tops and skirts were getting too short, but all of a sudden she just looks so much bigger. It is time to wash and pack up size 4 clothing and put it away, size 5's are coming out! Kara grows so much faster than Meghan or Amanda. She wore size 3 for about 8 months. Now Meghan wore those clothes for a year and a half. Meghan had too many clothes, and she rarely wore anything more than twice, so Kara got some nice things, and Kara destroyed 1/3 of them by ripping out hems and stretching necklines. I have a pile by the sewing machine, ready to be hemmed again.

Kara is not the only little girl who is not so little, Meghan just turned 10 and I noticed her 7's are too short, 8's still a bit big though, I dislike those in between stages. Meghan is taller, but unlike Kara, not chubby, so she can wear clothes a long time. Kara is a big girl, large boned, fleshy.

Amanda is taller, but she gains weight so slowly, that she looks too skinny, her pants are falling off, and she is eating more again.

Alopecia areata and Meghan

2010-11-05T08:06:00.008-07:00

Yesterday, I told Meghan she looked pretty, she said; "I am not pretty" and I said yes you are, and she said, "No, not pretty Mom".

It is her hair loss that is making her sad. I noticed her looking at her head in the mirror for a few weeks, since Buddy Walk. One of the moms asked me what was wrong with her head, and Meghan's hand flew up to the bald spot. Before that she did not seem that concerned about her hair loss, but now, I guess she feels it makes her ugly?

We have never said anything about it making her less beautiful than she is, I am very sad that my girl has become self-conscious about it now.

Meghan lost her bangs this time, this side is always pretty bad, but this was not the worst hair loss she has had because of alopecia, and it is regrowing here. See the fine hair? It is pretty long now, but now she lost all the hair of the same area on the other side, looks similar to receding hairlines of men with male pattern baldness. She also has two 3 inch circular patches of hair missing from her left and right parietal regions.

Meghan 2006

Alopecia areata is a hair-loss condition which usually affects the scalp, for Meghan, it also effects her body, she has no hair on her arms and legs. Her pediatrician and her dermatologist fear she may eventually lose all the hair on her head. She has kept her eyelashes and eyebrows this time, they have fallen out completely before.

Alopecia areata typically causes one or more patches of hair loss, the nape of her neck has been hairless for a couple of years, we do not think that hair will grow back again, but we don't know that for certain. Her condition has gotten progressively worse, she had quarter -sized patches at first, now she can lose all the hair on one side of her head. People stare at her sometimes, lots ask what happened. or what is wrong with her hair. She is noticing their stares and comments now. It breaks mommies heart to see her getting self-conscious about it.

Alopecia areata tends to affect younger individuals, both male and female, Meghan was a baby when she lost her eyebrows the first time. We honestly believed her sister had shaved them off, she was a bit jealous of Meghan and well, there was that time she cut off all the cats whiskers...Julia points out that ha ha, it was not her, how many times can we say we are sorry? :P

Alopecia areata is an autoimmune disorder, in which the immune system attacks hair follicles, that is what is believed, but researchers are not 100% certain. At one point one of her doctors told us that her impaired immune system may make her more prone to leukemia, however I have also read that people with autoimmune issues have less of a chance to get cancer. Since Meghan's maternal great grandfather passed away from leukemia at age 82, we feel there is some reason for concern, but do not dwell on it, why borrow trouble? He was also exposed to nuclear fallout like me, and it is likely that caused his cancer, and my grandmothers too, well, probably all of us. Look up RECA if you want to know more about downwinders.

For most patients, the condition resolves without treatment within a year, but hair loss is sometimes permanent. Meghan has had alopecia since infancy, so obviously it is not going away, and it is getting worse, will she lose all her hair? No one knows.

A number of treatments are known to aid in hair regrowth. Multiple treatments may be necessary, and none consistently works for all patients. We did squaric acid treatments for a few years, it helped. The idea in a simplified way; the squaric acid would be an irritant that would cause her white blood cells to go to that area and try to heal it, leaving her hair follicles alone. It seemed to work, her hair grew back, but after a time, her skin adjusted to the acid and we would increase concentration slightly, we eventually got up to 2% solution, at that point Meghan failed the protocol and we had to choose another medication to fight it. The next step was steroids, we refused them, we do not believe steroids are safe for children and alopecia is not life-threatening, she has not had any treatment for about 18 months.

Many treatments are promoted which have not proven to be of benefit. Since it is an autoimmune issue, there are very few safe treatments, the medical world wants to shut down the over-reaction of the immune system by giving medication that significantly alters a persons immune system, making them susceptible to cancer and infections, we say a big no thank you to these.

We cut out gluten, her skin cleared up, her hair grew back on one side, but fell out on the other. She has thick misshapen toenails from her disorder. They are hard to cut. So far we have not found a good way to combat this using nutrition.
If it is genetic, there is nothing we can do with the current medical knowledge of auto-immune disorders. About 10% of children born with Down syndrome have alopecia, and the alopecia gene is on chromosome 21, hmmm.
http://www.ds-health.com/abst/a0008.htm to read about this.

Hair is not necessary to live, but if you ever lost yours, you would know how badly it feels not to have it. I lost mine because of chemotherapy, but it grew back in pretty quickly, sure it was a weird shade of green, but it grew back (it did return to normal). I have two sons with different types of balding, one with male pattern, and the other has thinning all over his scalp. My husband is losing his hair exactly the way his father did. My maternal grandfather was completely bald and I think Meghan simply had bad genetics where hair loss is concerned.

Kris and Julia, June 2003

Mommy and Meghan November 2003. My hair was about 1 inch long, growing back after chemotherapy. I understand how it feels to be bald, how people treat you differently. I wore a wig so I did not have to answer questions, or have people look at me with pity in their eyes. Meghan cannot wear a wig, she is not bald enough, wigs hurt and itch, I am going to try my hand making her some hats with a circular loom. One of every color! With crocheted flowers!

I am grateful that it is all that is wrong with her, I know it could be much worse, for Meghan though, it is difficult, she will likely never have a full head of hair again.

The magical 3 year mark for Kara

2010-11-02T00:25:00.007-07:00

When we decided to adopt there was always one thing I thought about, sometimes fretted about. "Could I love a child not born to me?" and followed quickly after that thought was "Will they ever love me?" I also thought about bonding with my other children and our newest addition, our older children were adults, they could have their own kids the ages of the girls we were adopting. Could they ever bond with the little stranger we brought home?

I had read somewhere in my hours of adoption reading that it took the little one you adopt as long as they had lived in the orphanage to forget their lives there and to fully integrate into your home. That 3 years is almost here for Kara. I have been watching her pretty closely the last few weeks, something changed in her, she seemed to have a serenity I did not notice before, a certainty that she was part of us, a Levario for good. Do I think she contemplates that, no, but I think in her little girl way she knows.

She is a dreamer. Though I do not know yet what she dreams about? Likely yummy food right now. She still loves to eat though she has become a picky eater, I never thought that would ever happen with her.

Kara seems like such a serious little girl, she can stare at you with the saddest brown eyes and make you wonder if she has sorrow in her little heart you cannot reach. Then like someone flipped a switch she will tilt her head to the side, get a quiver in her lip and jump at you in a fierce hug, giggling in happiness. She has the most adorable and contagious giggle. This is a favorite game of hers, trying to look non-chalant but unable to control her little face, and POUNCE. We play this game after I change her diaper. After the 2nd or 3rd time Meghan and Amanda are right there jumping with Kara. Kara is not a fan of sharing her mama. Amanda is not a fan of it either, they are possessive of my attention and time. I guess I would be too if I never had a mama before?

I think Kara does think of me as her Mama completely now, there were times when I felt like she just thought I was a person who got her food, but she is learning what moms and dads do. She makes herself cry so we will come to her side, and she sobs into our necks, and then there goes that switch, she smiles, wipes away the tears and goes about her business. I know that there were two women in her orphanage that may have answered her cries, but I also sat and heard infants hiccuping sobs in the back while I played with Kara in the front room. So I am sure there were plenty of times that our daughter cried out in pain or loneliness and no one was there to kiss her tears away.

I am glad I stayed in Ukraine the entire 6 weeks to bond with Kara, it was sometimes unbearably lonely especially in the middle of the night with no TV to watch or Internet to surf. I think it was important to bond as much as I could with little Kara and lay a foundation for our future as mother and daughter.

It has not been a walk in the park. Kara was a daredevil with destructive tendencies and impulsivity usually aimed at Meghan. Hair pulling, scratching, pinching, biting, things a toddler may do, and Kara was much like a 8 or 9 month old when we brought her home.

There were so many days I could not wait for nap time so Meghan and I could spend quiet time together, I think it was hardest for her to share me with Kara. It was also hard for Julia, as I could not jump in a car and take her things to school or take her places because Kara napped 2-3 hours every afternoon. There were times when I felt like I was babysitting her, especially those first 6 months home. Bringing Amanda home 9 months after Kara also made things hard for Kara and set us back quite a bit in bonding, she was green-eyed with jealousy and so mad at me.

Little by little I adjusted to Kara being my daughter, and Kara learned to be a member of a family. She and Meghan play so well together now, with minimal hair pulling. In the morning Meghan will search out clothes for Kara, help her dress, put on her shoes and take her hand and say; "Come on Kara" and Kara follows her outside. They tour the back yard and watch cars drive by and then come back in ready for breakfast.

When I saw Reece's Rainbow the first time, all I could think about was how sad it was that so many children were left in a hospital, alone and cold, while their parents carried on with their lives (I do not think it was easy for them). I had a dream of a little girl being a sister to Meghan and them bonding for life. I think that magic has happened for those two. Since Amanda is still so much like a baby, they kind of ignore her, she does get into the mix many times, and she is one determined little girl herself. I am sure as soon as she is walking all the time they will begin to include her in more things.

Kara went from a little baby to a girl in the last three years, at age 6 she is very much like a two year old, things will likely move slower for Kara, but she is progressing and that is what is important. She is consistently using three sign "sentences" with prompting, and is vocalizing more and more.

Maybe in three years she will talk my ear off? I sure hope so.

"She has run of the mill Down syndrome"

2010-10-24T21:23:00.007-07:00

Ah, I was reading a blog about how they found out their precious daughter had Down syndrome, and I remember how the news was delivered to me.

It's out of the ordinary; but Meghan was almost 2 months old before we finally got her karyotype test. She was not one of those babies who looked typical and parents find out when development lags that they have Down syndrome. She looked like a baby with Down syndrome. She was beautiful, gorgeous eyes with Brushfield spots that made them sparkle like diamonds, and the prettiest soft skin.

I can't remember why we finally did it, odd, insurance is likely, so much was happening at the time, whatever the reason was, she did not get the blood test for a while.

I have to admit that there were times I was hoping they would tell me "Well, we made a mistake, it is not Ds at all", I suppose most of us do wish that, life is so hard, growing up can be really hard for kids, even if their only difference is a stutter or needing glasses, so of course we want our kids to have less reasons to be picked on by others...it concerned us because we always wanted Meghan fully included in school from her birth (but that is another story for another day).

On the day of the blood test I was uneasy, Julia was with us, she had just told off some interns (she's not a lab rat you know), she has always been a girl who knew her mind in that respect, and we had finally asked about blood tests, everyone was shocked, what do you mean? The hospital does those at birth...except Meghan was born in a birthing center with midwives, not in a hospital, so that was yet another routine test or discussion that fell through the cracks.

We navigated a confusing basement area to find the lab to draw Meghan's blood; it had to be a special lab, one for genetic testing only. My heart was thumping, when Eric, our third born developed life threatening jaundice from ABO incompatibility, and he had to be hospitalized 3 days after his birth. I will never forget his painful cries as they attempted to get an IV into his tiny body, coming out to tell me they were thinking of doing a surgery to reopen his umbilical artery and putting it in there, it ended up in his leg... They made me stay outside of the room and I was only able to comfort him after they were done, I was livid with them for forcing me out; 3 days postpartum and majorly hormonal, I stood against the wall in tears, sobbing. As a result of that experience, we knew getting blood from Meghan was going to be tough. It is traumatic to see them repeatedly try to get into the vein of an infant, I always feel like I will pass out. That is probably why they made me wait outside for Eric…who wants mommy fainting?

After a lot of struggle, they got enough blood and wrapped Meghan's arm up in elastic band and we went back to the examination room to put her clothes back on. Julia turned white and said "Why is her arm purple mom?" Sure enough the elastic had cut off the flow of blood to her lower arm; we quickly removed the too tight elastic from her little arm and watched it regain a normal appearance. It scared Julia, she still remembers that day, but she finally understood why mommy was always so sad after Meghan saw the doctor. They seemed more careless with Meghan than our other 5 children, or maybe we were more sensitive?

A month passed, and I remember being asked what the genetic tests had found and saying; "Hmm, I don't know, no one ever mentioned if they got the results". So I called the pediatricians office and the nurse said they had been there for weeks, but she was not allowed to report the results to me, even though she knew what they said, that a pediatrician would call me with them.

A few hours later a harried sounding doctor called and said, oh yes, here are the results "You daughter has run of the mill Down syndrome". I thanked him and hung up. Well, no surprises there, but an ever so slight disappointment in the back of my mind, “So it is true”.

I told another mom what the doctor had said, not really thinking about it, and she was aghast, how flippant of that doctor to say it in such a way, I guess I was used to them being insensitive, I had not given it much thought until I saw her reaction.

So Meghan has run of the mill Down syndrome, so do Kara and Amanda. I am certain their moms did not think it was so run of the mill when they heard the news either. 90% of babies born with Down syndrome have Trisomy 21; the other types, mosaic and translocation are much rarer.

Hmmm, run of the mill Down syndrome? What does a child look like who has run of the mill Down syndrome?

When Meghan was younger, I spent a lot of time checking off her Ds characteristics, she has the palmar crease on one hand, not the other, her nose looked like mine but she has a flat facial profile, but so did I as a child...her almond shaped eyes are just like mine too, but she had epicanthal folds, did I, who knows? Her skull is smaller than average, so is mine. She had thick thumbs and shorter fingers, but skinny feet. Her arms and legs are slightly shorter than average. She has stick em out ears, no little folds along the tops. She also had moderate hypotonia and loose joints. Stabisimus which eventually required corrective surgery, and is becoming slightly near-sighted. She also had a heart defect; also minor compared to other children’s, major to us. When you think about it, all those things are pretty minor, except that to us, who never has a child with any major health issues, they were not.

I will never forget the way I felt when a mom who was working with our family to help us adjust to our news said "Oh, your daughter is high functioning" and there was a bit and sorrow and jealousy there. High functioning compared to what? It was the first time I heard those words in relationship to a child. Her daughter was born with lots of medical issues including cataracts which made her legally blind, I suppose to her, any child without vision issues would be "higher functioning" than her daughter. Her daughter also had trisomy 21.

I had 15 close friends who had babies around Meghan's age, a blessing at a time when so much was new. One of those sweet girls had epilepsy, and trisomy 21. Another little guy had Tetrology of Fallot and AV Canal, he was also very ill post surgery and had many other health issues following it. He also has trisomy 21.

Just as a side note, there were only two of us in that group who were older moms, the rest were younger than 35, one was 18.

When we adopted Kara it was plain that she had the curved pinkie finger, no palmar creases, but the little fold on her lower set ears. It was not until I took her from the orphanage on Gotcha day that I saw that she had webbed toes, her 2nd to her 3rd, and her 3rd and her 4th, she also has a huge space between her big toe and the rest, and short, flat, wide feet. Kara also has extremely low tone and very loose joints. She has trunk weakness and shoulder girdle weakness and tends to gain weight easily. Kara has nystagmus and strabismus, but has normal functional vision. It was reported to us in Ukraine that she had "wild eyes" and we quickly learned they were referring to the rapid movement of her eyes when she was tired. When we picked up Kara her facilitator kept telling me she did not look like a “Down syndrome baby”. For Kara the “look” was transient when she was three, but more obvious now.

Amanda Moo? We have a couple of pictures of her from adoption websites, she always looked like an infant with Down syndrome too, in one she looks grumpy LOL, the other disinterested. I wondered about autism and her pupil size when I saw her picture the first time. She has some other issues not associated with Down syndrome; positional plagiocephaly, not certain if it was from the womb, or from being left in a crib too long, a partial expression of Aniridia, one in 80,000 people have this condition, varying from partial to full (no iris, just the black of the pupil) interesting that most people with aniridia are nearsighted, but Amanda is far sighted. She also has minor strabismus. Amanda has a persistent left superior vena cava, only 2% to 4.5% of the population have dual superior venae cavae. Amanda is just unique! Oh, and she also has run of the mill Down syndrome, and autism....

31 for 21-day 23-Our Buddy Walk ;o(

2010-10-23T23:33:00.006-07:00

Goodness, we got there so late because none of the girls were really gung ho about leaving home today, we missed the walking part entirely and spent the time there just chatting with really nice folks. Honestly, I love to chat, but the day was about my children, not me, and I did not feel much of a celebration going on, maybe because I missed the walk part?

Pictures I took of the girls before we left, you can see how they felt about going.

I think that folks planning the Buddy Walk need to find their inner child, because looking at from a child's POV, it was not very magical, and from a teens, maybe a bit more interesting, they had a band. I cannot tell you what the adults felt, but even they seemed blase' about the "party to celebrate them"..

That is all I have to say about this, probably said too much already, it was just OK, which is sad, because it should be AMAZING.

31 for 21- The Da Vinci Players

2010-10-22T00:33:00.006-07:00

Our son Brian is an actor, for a few years he has been associated with a local theater group; "The Da Vinci Players" from Studio Connections.

Last weekend we took the little girls to see "Man of La Mancha" and as always, were impressed with all the actors, the show was wonderful. Got a great review and of course proud mom loved seeing her sons name :

From the review:
Around these three principals are arrayed the "sane" people of the world: the well-meaning innkeeper (Todd Luethjohann), a spineless priest (Rob Roberts), the cynical Dr. Carrasco (Brian Levario) and Quixote's calculating niece (Julia Higgins). Encila has chosen his cast well, and each of these performers shines.

It was difficult getting up the energy to go, we had a long week, a funeral that broke our hearts, audiology appointments for all three girls, ugh, three hours in a small office with three active girls...and a choral concert, and our schedule was a little off, which in turn throws off the girls behavior as well. Now normally we take the girls to a play and they watch happily, clap when the acts are over and are the best audience members, except this time the audience was, well, grumpier than normal and the girls were exhausted from a crazy week too.

Kara was wiggly at the play, Amanda decided that she should sing a long with the cast. We got those backward glances from people when they made a noise, all older folks...60-70. At one point after Tom and I switched kids on laps, Kara began to do the slide, are you familiar with the slide? When your child seemingly loses their bones and oozes repeatedly to the floor from your lap in a puddle then quickly regains their use so they can run around. Meghan did the slide on the way to Ukraine, but she was half asleep and just wanted to lie on the floor and sleep. Amanda began singing with the cast very loudly, she purely loves music and is moved to join, this is just plain truth! I could not get her to stop, and did not want to ruin the play for others, so I got up to take her to Tom, who already exited to keep Kara happy. As I was trying to climb down a very steep step, a woman in the back placed her finger to her lips, scowled at us and said SHHHH. She turn her head indignantly as I left, oh it irked me. To be clear, we have always removed our children if they are disrupting a movie, play, musical performance, but we find some people less tolerant of our girls because they have Down syndrome, and you can always tell who these people are, our girls make them visibly uncomfortable.

Tom decided to take both girls to the van, and I stayed and watched the first act with Meghan, she was a perfectly happy girl, watching the show and loving one on one time with mommy. She kept snuggling with me and kissing my cheek, we need to get out more, just she and I. Except my thoughts turning to Tom missing the show. We have never had to remove the girls from one of Studio Connections plays before. The audience has always been very sweet to us, and understanding of the girls too.

At intermission Meghan and I went out to the van to find Tom sitting in the open sliding door, Amanda playing in the back seat and Kara eating. (Kara is always eating). He said he was perfectly OK being out there and I should enjoy the show without him, he was going for a drive with Kara and Amanda. I love him for not being mad about leaving, I missed having him there. He said, he wanted to tell that woman, "Of course Amanda wanted to sing, she is Estonian after all". I was still perturbed at the woman who rudely shushed us. I dislike people acting in a bad way and excusing themselves because they feel you messed something up for them. That righteous justification...maybe she was from New York? (family joke)

Meghan and I returned to our seat for the second act and the woman sitting next to us asked where Kara and Amanda were. I told her people were getting annoyed with them, especially the woman who got vocal about it. She said "F*** her, yes, my mouth was agape too, your girls had the right to watch the play too, and they were just enjoying themselves, and what a shame people had to act so rudely". Have to love it when people say what they think.

We watched the rest of the play, met the cast, and found our son, we told him we were sorry about his sisters, he said it was fine, they were fine.

The next day Brain and I talked about the show, I told him about the people who were annoyed and how we were afraid his sisters would ruin the play or cause a scene, which is why we removed them. He said he told the entire cast his sisters were coming, and if they heard slightly off key singing coming from the audience, it was likely them. They had been waiting to hear something, when Amanda joined in, someone asked "What is that" and Brian said, "my sister", and everyone smiled. He said they were all OK with the girls too.

Studio Connections has always been a comfortable and safe place for us to take our girls because everyone has always been understanding if they get excited or Meghan says hi to her brother while he is on stage...we have always felt accepted there and it gave us a chance to do something as a family. So it makes me sad that as Studio Connections gains more recognition and more people attend the plays, some of those people will not be as accepting of my three little gals as the previous audiences were.

Studio Connections is moving to a bigger theater after this show, they have outgrown this one which is fabulous for them, they are successful! However I am rather sad too, it means it may become one less place I can take my three sometimes loud, sometimes unruly children, a place where they are completely accepted. I am realizing that there are not many places where they are, and it makes me angry and sad.

Hopefully my girls will outgrow this phase soon...they had always been better behaved (not perfect) before.

"Why didn't we leave the girls with a babysitter?" everyone asks us this when they see the girls with us. They never take their kids to adult performances, they stay home with grandma. My children have one grandmother and she does not live here, and if she did, she is not up to caring for them, she has too many mobility issues. We tend to not ask immediate family to take care of their sisters, they have their own days planned, babysitting is not usually on their lists. If they volunteer, great, if not, oh well. What about their respite worker? He is Brian, who was in the play.

We want the girls to be able to enjoy theater too, and "Man of La Mancha" was a musical, which they love the best. For some of the more serious plays, we do try to find someone to take care of the girls, but our options are severely limited, honestly, we usually miss those plays completely. However we want the girls to understand what it means to be a respectful audience members.

31 for 21-lots of pictures

2010-10-20T18:54:00.017-07:00

Meghan loves putting together interesting outfits!

Self expression is a good thing!

What, you have a camera? Let me jump on you.

Oh yes, there is mama wanting me to smile again...

Mom, my picture too, whoops, turned my head.

Pretty Kara, her 6th birthday is coming up fast.

Amanda and her baby doll, she is learning to play with all the toys now, yay!!

Kara is not a tiny girl, look at those hands holding her favorite dolly.

Meghan in the car she barely fits into!

Amanda and Smudge the cat had a disagreement, and Smudge won. Maybe Amanda should stop assaulting Smudge? Did she learn her lesson yet? No.

Now that is a tongue! Kara saying Blah blah blah.

The little girl look is beginning to leave Meghan's face,

ahhh,

am I ready for her to be a young woman yet?

Yep, Amanda is standing, she walks around a lot, but still scoots too.

Love those brown eyes! pretty Kara!

A video of Amanda playing peek-a-boo with mom.

31 for 21

2010-10-19T21:04:00.001-07:00

31 for 21- Funny girl

2010-10-16T22:27:00.005-07:00

Pilate's anyone?

Amanda does this hundreds of times a day, her new PT was talking bout core strength and I told her, that is one thing Amanda does have!

31 for 21- day 15--About Down Syndrome

2010-10-15T11:39:00.004-07:00

http://www.about-down-syndrome.com/index.html lots of links to follow

I found this poem again, I have it listed with Meghan's birth story:

Special Angel

(Down Syndrome Birth) by Sandy Eakle

As beautiful angels wings were
flying over the streets of gold,
the baby angels could only watch
since they weren't very old.

Then one day God stopped to talk
to a little one without wings,
just listen to the angels sing".

Confused yet excited the little
one said to the Lord,
"But I'm different from the others God
and not a miracle to behold".

"Oh, but yes you are," He said
with a hug and smile on his face.
"You're the greatest gift I can give
and a loving home you will grace".

You mean, tho I'm different
and will never be beautiful or smart
Someone will want me and give
me a place in their heart?"

"Gee God.....that person must be
special to be glad to have me,
Cause most folks would frown
and upset they would be."

God said, "your little heart was filled
with more love than most.
Cause I knew this family would love you
and hold you real close.

So go my little angel and take
the greatest gift I can bestow.
You're that "special" angel few people
have the honor to know."

I do think it is a nice poem except for two things; it says:

"But I'm different from the others God, and not a miracle to behold"

I am sorry, perhaps different, slightly, but my girls are miracles to behold. So many fetuses are so fragile, they do not make it to term, many are terminated by their parents before they have a chance to take their first breath, many have severe heart defects, intestinal blockages, and health issues that can take their lives way too soon. So my three healthy (thank goodness, thank you HF) girls are a miracle to behold. All children are miracles in my mind and heart.

and this:

"You mean, tho I'm different and will never be beautiful or smart"

Truly, all my children were special and precious to me, I loved them as soon as I felt them move for the first time while carrying them, and I thought my babies were better looking than any I have ever seen before! ALL of them, but Meghan was ethereal, she seemed to have a special inner glow that made her radiant. She was beautiful, she still is, and Kara and Amanda are also gorgeous little girls, from the inside out.

As far as intelligence goes, I do not believe that an IQ test can adequately test how smart my three youngest are. We test them according to our criteria, would we pass theirs? They are bright, inquisitive, and smart, it just takes them longer to learn.

Not everyone will be a Rhodes scholar, I certainly am not. Though my girls sure fit the criteria:

Rhodes' legacy specified four standards by which applicants were to be judged:

literary and scholastic attainments; (Very few people work harder to achieve academic success than people with Down syndrome, do they understand string theory...no)

energy to use one's talents to the full, as exemplified by fondness for and success in sports; (Ever seen Special Olympics?)

truth, courage, devotion to duty, sympathy for and protection of the weak, kindliness, unselfishness and fellowship; (Even more so than most typical people I know)

moral force of character and instincts to lead, and to take an interest in one's fellow beings. (Again, most people with Trisomy 21 have love as their guiding force)

If you want some insight into the struggles of people with Ds living in our super speed world (when their moves slower), read this book, I read it when Meghan was a baby:
http://www.amazon.com/Count-Us-Growing-Down-Syndrome/dp/015622660X

I love, adore, admire and respect all of my children. When you have a child with Down syndrome; you learn that they have a determination that most people envy, they try and try until they get it. What is more, they usually accomplish what they set out to do (Where there is a will, there is a way). They should be an example to today's youth who seem to give up faster than any other generation I know.

31 for 21-day 14-About Meghan, Kara and Amanda

2010-10-14T19:20:00.010-07:00

We had a busy and emotional week, the girls speech therapist called and said she could not make it today and I was secretly grateful, I am exhausted. My dear friend called and wanted to stop by today and I asked her not to. Though I really would love to see her, not this week though, I am poor company.

We attended Renee's funeral and the church was full of people who loved her. My mind kept going to pre-natal diagnosis and how many children were not born, many because of Down syndrome, many because of cystic fibrosis, Renee had both. Yet there with her grieving family were hundreds of people who loved Renee, people whose lives she touched and changed forever.

She was an ambassador for good will, love, and actually the hospital she spent too much of her young life in.

She was not the least among us, but a light in the dark, as many of our precious children are. I see her beautiful face and I think LOVE. What a legacy she has left us.

My own beautiful girls do this in their own ways too.

Meghan is our sweet and funny sweetheart. She also has a stubborn streak that no one can change. She comes by it naturally, her dad and I are also stubborn, or as my dad said, hardheaded. Mom used to tell him, "But she has a tender heart" and so does my Meghan. Meghan loves to shop, and she is gaining self-control and independence in stores for the most part. She sometimes gives her daddy a hard time. We shop for groceries at Trader Joe's for the most part, we need chemical free food, gluten free, and such, and they have more of a section at better deals. Trader Joe's is the only store where everyone is kind, understanding and supportive of our family. Another reason why we love it there. (not that I think everyone needs to shop there, it is too already too small and crowded *wink*)

We have been going to Trader Joe's since I finished chemotherapy and discovered I could no longer tolerate-or digest dairy, wheat, or anything artificial in my food. Meghan was 2 1/2 at that time.

Meghan knows where everything is at that store and she knows what we buy. She will move through that crowded store and get everything we need on her own. Everyone knows her there too, and they just treat her like any other kid. They of course notice she sports that extra chromosome, in fact, one of the cashiers asked us to help her pass an early childhood development class and she interviewed me about all three girls. Hope she got a good grade!

What I appreciate about that entire group of people working there is simply that they see my girls as children, complete, whole and they have never treated them like some people have.

Target can be bad, it is too big, too many people work there, always someone different checking you out. Amanda is not a fan of Target, when she gets nervous she will hide her face, play with her fingers,, or resort to her self stim behaviors she used at the orphanage. When she sounds like Darth Vader, we know she is overwhelmed. Thankfully that is becoming more rare. She loves grocery shopping though, Tom sometimes takes each girl individually and you can hear her singing when he inevitably calls me asking "What do we need again?"

How about Kara, well, Kara seems to think that picking up things off shelves and tossing them is the best and more fun thing ever! She is at the stage where everything needs to be touched and held, including apples, and other fruit, whoops, and the hand really is quicker than the eye. Kara has a nonchalant attitude about life, she enjoys interacting with people, if they take the time to engage her, but otherwise, forget about it. She has this very cute way of engaging me when she wants a hug. She tilts her head ever so slightly to the right and then jumps on me giggling. She has to be the best cuddle bug ever, and as we say "She is so squish-able".

Kara has been struggling with expressive language, that attitude of, yea, so what, who cares, does not help. She reminds me of a teenage boy...ever had one, then you know what I mean. It occurred to her speech therapist and I that Kara was not communicating because she lost language completely. Except lately she has been signing more words, vocalizing and trying to approximate sounds, she played the ba ba ba matching sound game with me for 20 minutes. Here's hoping we don't to the "two steps forward, three back".

Oh Amanda, we are all joking that every step she takes walking makes her stinker gene kick in more. Lately she has taken to screaming, LOUDLY, sounds like someone is killing her, but she is rocking on her doggie, calm as can be, she is just learning a new sound, heaven help us.

It is fun to watch her walking around, she looks like an 18 month old, and she toddles like an infant! She is growing very slowly, Meghan also grew slowly, Kara is the only one of our three that does not have any issues with gaining weight!

31 for21-Welcome to Holland-revisted

2010-10-13T09:25:00.003-07:00

This first poem was sent to me yesterday and I am passing it on. You can read her blog here:
http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it. And it will change who you are, for the better.

Dana Nieder, 10/2010.

Of course I had to include the original:

Welcome To Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It’s just a different place.

It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.* * *

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

And one more, for Amanda-who has her own struggles with Autism:

WELCOME TO BEIRUT by Susan F. Rzucidlo (Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel.

It's like this.." There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor.

Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound.

Your child regresses for no apparent reason, and it feels like a kick in the stomach.

Some bully makes fun of your kid and your heart aches.

You're excluded from activities and functions because of your child and you cry.

Your other children are embarrassed to be around your disabled child and you sigh.

You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up.

Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen.

You're exhausted because your child doesn't sleep.

And yet, hope springs eternal. Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along.
Your child will make progress.

When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar.

You will know that you have experienced a miracle and you will rejoice.

The smallest improvement will look like a huge leap to you.

You will marvel at typical development and realize how amazing it is.

You will know sorrow like few others and yet you will know joy above joy.

You will meet dirty faced angels on playgrounds who are kind to your child without being told to be.

There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others.

Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times.

For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

Just too sad to post

2010-10-12T17:19:00.007-07:00

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love. --Washington Irving

Renee's was laid to rest today, her service was beautiful, many tears were shed.

Goodbye sweet angel.

31 for 21-Day 11- Down syndrome and preconceptions of the medical community

2010-10-11T18:05:00.006-07:00

When Meghan was born, the pediatrician we saw gave us bad advice, he was bigoted towards our daughter, and we were horrified by him suggesting we just leave our newborn baby there and walk away from her. We thought it was an isolated incident, but we learned in the 9 years since that we were not alone in getting outdated and bigoted advice.

When Meghan was a baby, I poured over the Internet looking for articles about Down syndrome, not many were encouraging. truly, the more I read, the sadder I got, my heavens, was life really so bleak with a child with Ds?

A few months after we brought Amanda home in 2008, we learned George Bush signed a bill into law that all of us in the Down syndrome community hoped would save the lives of prenatally diagnosed infants. However our excitement was short lived. A pharmaceutical company had concurrently developed a test for Down syndrome that could diagnose it (and other genetic disorders) in early pregnancy. There is only one reason for this test, to give the parents the chance to abort an early pregnancy as opposed to a 5 month pregnancy. I am positive the researchers were not hoping to give parents more time to prepare for a baby born with Down syndrome, I believe they developed this test so parents would abort the so-called defective fetus.

I have spent more time looking up articles, so yes, a depressing subject for some, sorry, you can stop reading now. I think the information needs to be shared. I have color coded each quote that goes with it's respective URL. The quotes are from those texts, and not written by me. If you wish to read the articles or studies, click on the links. All my own words are written in black.

This is an older article, and therefor the idiom is from that time, however, this is an important subject, do people with Down syndrome and other groups with cognitive delays get substandard care, and do doctors deny them proper care simply because of their delays?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594795/pdf/jnma00296-0105.pdf

(from this article above)
In 2002, the office of the U.S. surgeon general published are port detailing the discrepancies between the quality of health care afforded to persons with and without mental retardation. This article examines the case of a female resident of a developmental center with profound mental retardation due to Down syndrome and degenerative hip disease. Although she was in urgent need of a total hip replacement, the operation was denied or delayed by several different surgeons. Using a survey of physician attitudes, we examine several possible motivations behind the surgeons' reluctance to perform the procedure and conclude that these reasons were not appropriate in this case. Finally,we reiterate the surgeon generals call to eradicate preconceptions held in the medical community about the population of persons with mental retardation that result in similar failures to provide adequate care.

http://abcnews.go.com/GMA/OnCall/story?id=1207054&page=1

(from ABC news)

Negative Reaction from Doctors

In a recent survey, mothers of children with Down syndrome reported physicians are overwhelmingly negative when diagnosing fetuses and newborns with Down syndrome, often advising the mother to discontinue the pregnancy or to put the child up for adoption.

http://www.brianskotko.com/ if you want to read more about the doctor and author of the following studies.

This PDF discusses prenatal diagnosis and parents thoughts.

http://www.brianskotko.com/images/stories/Files/ajogfinalprenatalmanuscript.pdf

According to this study, a woman with a prenatal diagnosis has a more positive birth experience than a woman, like myself, who finds out after the birth of their baby. However, I have talked to many women personally who were still hurt by their OB's assumption that they would terminate their pregnancies. In fact quite a few said they had calls from their doctors asking when they wanted to schedule their abortions. A 92% abortion rate following prenatal diagnosis indicates that physicians continue to paint a bleak picture of the infants future.

This PDF discusses thoughts and feelings of mothers who learned of the children's Down syndrome diagnosis after the birth of their babies.

http://www.brianskotko.com/images/stories/Files/pediatricsmanuscriptfinalversion.pdf

“In general, what I was taught in medical school and in my training is that disability—no matter what its form—is a bad thing and to be avoided at all costs.

Lectures or seminars on DS or other genetic syndromes were geared toward the description of the abnormalities . . . that children with congenital diseases
may find their lives to be rich and valuable was hardly recognized, much less stressed,” wrote perinatologist Steven Ralston. 11

Yes, so many doctors seem to give outdated advice concerning a Down syndrome diagnosis, a few of my friends who have children with Down syndrome had very positive experiences, but they seem to be the exception.

When we had Meghan, not one doctor told us about support groups, or national Down syndrome organizations. Though they seemed thrilled to have a Down syndrome specimen for their teaching hospital, and merrily checked out all of her Down syndrome features...picture a couple trying to come to terms with their daughters diagnosis and heart issues watching 5 interns flipping their newborn on her tummy so they could look for abnormal skull shape, or neck issues, and such. They were insensitive, and we had to put a stop to their actions, and with the help of our (8 year old) Julia we did, as we have discussed before. I will never forget her admonishing them; "She is not a lab rat you know". Indeed she was not. At that point forward we denied all the tests they wanted to perform on our new daughter, none of them were for suspected issues, but instead so the interns could "practice" them on our daughter. I do not believe many of them saw her as a human being worthy of their respect. Only one, Dr Bobby, ever treated Meghan with tenderness, and maybe that is why she dislikes doctors so much now? (I have spoken about this before, obviously I have some anger issues surrounding it)

The pediatricians were not supportive of us as a family. It was not until Meghan was diagnosed with trachealmalacia that we learned about early intervention and support groups. We were in the pulmonologists office and happened upon an old friend, Susan Daniels, who served on the Southern Arizona Fitness Association board of directors with me. She saw me holding Meghan and asked who we had been in contact with concerning therapy, etc, we said NO ONE. She gave us a notebook from Pilot Parents and phone numbers for DDD. The supportive mom from Pilot Parents peer to peer support, D, guided me in those early months, she told me about The Down Syndrome Connection. Without that chance meeting at the pulmonologists, I am certain it would have been a few more months before I learned of all the support readily available in town. Our pediatrician failed us miserably. Why didn't they have the information we needed to get support from other parents, and why didn't they tell us about early intervention when Meghan was born?

(more from the above PDF)

Did the mothers who had their children with DS in 1965 report
different experiences than the mothers who had their children in
2003?

The majority of mothers thought that, when their physicians talked about DS, they neither talked about nor emphasized the positive aspects of the
condition. In contrast, approximately on half of the mothers mentioned that their physicians talked about or emphasized the negative aspects
of DS.

Some mothers reported that their physician’s explanations were insensitive or factually incorrect. A mother who had a child with DS in 2001 recalled
that, when she received the diagnosis, “The doctor then asked if we understood that this meant that she would never live on her own or hold a job. This doctor was the ‘expert.’"

And finally,
Communicating the postnatal diagnosis of Down’s
syndrome: an international call for change

http://www.brianskotko.com/images/stories/Files/italianjournalofpediatricsfinal.pdf

About half of the mothers in the United States suggested that their physicians talked about negative aspects of DS (such as, medical complications and cognitive difficulties),and some reported that their pediatricians
emphasized these aspects. The same responses could be found in Spain, but the majority of these mothers reported that their physicians did not talk about the positive aspects either, suggesting that they received little to no information at all (Tab. II).

Mothers from both countries expressed a wish that they had learned of the diagnosis as soon as their physicians suspected it 1 25. They took note of the “silence” that seemed to surround their child’s birth, sensing that their
physicians were trying to avoid telling them something.

Mothers reported that this hesitancy by physicians only contributed to mounting fear and anxiety. Many of the mothers also reported, with anger, that they were informed without their partner present and often in a
public setting.

That was how the Prenatally and Postnatally Diagnosed Conditions Awareness Act came to be signed into law 10/08/2008

http://www.govtrack.us/congress/bill.xpd?bill=s110-1810

http://www.dredf.org/InfoSheetBrownbackKennedy.pdf
What the Act Will Do :

The Act will provide more comprehensive information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with Down syndrome or another condition. The Secretary of the Department of Health and Human Services is now authorized to:

Collect and disseminate evidence-based information on Down syndrome and other conditions diagnosed either through prenatal genetic testing or screening or in the 12 month period beginning at birth.

Establish a resource telephone hotline for new or expectant parents.

Expand and further develop local and national networks for peer-support, outreach and information to parents.

Establish awareness and education programs for health care providers who talk to parents about prenatal genetic testing.

Set up a national registry or network of local registries of families interested in adopting newborns with Down syndrome and other conditions.

However, while this bill was a victory for parents who support disability rights, a pharmaceutical company was celebrating:

http://www.patriciaebauer.com/2008/09/25/kennedy-brownback-3-3302/

While the bill has been making its way through Congress, the development of prenatal tests has been causing excitement among investors who say the market for accurate testing tools has multi-billion dollar potential. Just this week, the stock of Caliifornia-based Sequenom Inc. has jumped more than 30 percent on an announcement that it had conducted a successful study of a new prenatal test.

Sequenom reported that its SEQureDx test detected Down syndrome accurately in the first and second trimester of pregnancy in about 200 samples with no false positives or false negatives, matching earlier data from another 200 samples.

For many women of childbearing age, this was another test they could have to ensure they gave birth to that proverbial perfect infant. To millions of mothers who had children with Down syndrome, this was an attack on the existence of their beloved children. As I looked upon my three wonderful (and sometimes annoying and just like other children) daughters and read about this prenatal test, my heart sank.

Every time it felt like we were gaining momentum on acceptance and support of our children, the medical community announced they found more ways to kill them before they were born. They were saying my children were not worthy of life simply by applauding this new test. The ACOG was ecstatic! They supported this new test 100%, just think, no woman would ever have to suffer the birth of a Down syndrome baby again! (I used the term Down syndrome baby because this is the way the medical community describes my children)

Thankfully there was a problem with the research procedures of SEQureDx, and the release of the test was delayed:

Sequenom Reports Delay of Release of SEQureDx Trisomy 21 Test

However, they have not given up:

http://www.newsrx.com/health-alert/3422.html

"Sequenom is committed to developing the next generation of prenatal diagnostic tools that will provide physicians with the capabilities they need to noninvasively diagnose genetic disorders early in a woman's pregnancy," commented Dr. Stylli. "We believe these unique, noninvasive digital technologies have the potential to dramatically impact the prenatal diagnostic market and we look forward to advancing these innovative approaches as part of our long-term strategy to expand our prenatal diagnostics franchise."

http://www.medicaldevicestoday.com/2008/11/down-syndrome-diagnosis-sequenom-moves-closer-to-noninvasive-test.html

They are excited about profits and their research.

I wonder how many of these scientists embrace eugenics?

31 for 21-10-10-10- Living in the now

2010-10-10T10:10:00.003-07:00

I spend so much time looking for information about Down syndrome, reading some of it incenses me, and that makes some posts long and I think overly negative. I have two unpublished posts for this challenge, both are about issues that make me angry, and I got lost writing them, I may go back and edit them when I am not emotionally raw. Maybe post later on, I don't know right now.

The one abiding truth for me and my daughters with Down syndrome is that we love each other. Sure they can get into everything, they can have behaviors that drive me bonkers, and mommy can be having a bad day and be grumpy herself, but all I have to do is sit down on the floor and 3 adorable girls are on top of me hugging me and kissing my cheek, smiling, laughing. As I sit there holding my daughters, I feel like the luckiest person on earth.

Yes my typical children loved to sit with me too when they were tiny tots, but they always had their minds on the next thing they wanted to do, they were busy, they moved fast, so with them it was "Here mom, take a hug, can I go now?" We love one another too, and I am so lucky to have them in my life, but their minds were in the future, the little gals live in the now.

This is just one of the many things I love about my little girls.

31 for 21 derailed plans

2010-10-09T22:53:00.003-07:00

I actually have two very long posts for the blog from today and the 6th, but I cannot find the emotional energy to finish them, I may not complete the challenge. I am so sad after yesterdays news, I need time to regroup. No one should ever lose their child, not for any reason. I am heart sore for Renee's parents.

Please continue to pray for peace for the Blanchards.

31 for 21-day 9-What do you see when you look at my children?

2010-10-09T11:58:00.005-07:00

Julia had a birthday on Thursday, and the little girls, Julia and I went shopping for her birthday presents.

We put Kara and Amanda in the big red stroller and Meghan walked along side us, she actually is doing pretty well on our shopping trips, staying close to me, coming back fast is she gets too far ahead. She does like to push her dad's buttons though, and runs off on him sometimes. (poor daddy)

We went to the mall; not my favorite place, the mall rats pushing their way through everyone, the vendors in your face from the kiosks, the rude stares. Julia wanted boots from a specific mall store, so I relented, the day was about her, not me.

She was excited to be picking out things to wear on her birthday, it is fun to shop with her. Taking the girls with us means the stroller gets caught on every display, we knock things over, and I am annoyed by the third store. Don't moms shop more than anyone else? Don't a lot of us use strollers? Why are displays placed so dang close together anyway?

So while we are maneuvering around obstacles and taking things out of Kara's hands, or getting Meghan out of a dress she wanted to try on (she likes the sparkly ones) we rarely notice other shoppers unless they stop and talk to us.

Wednesday, we did though, because they were openly glaring ( not to be confused with staring) at me and the little girls. Not everyone glared, some plainly stared or gawked, and a few asked if Kara and Amanda were twins. No one asked if I were their grandmother for once, I guess that was good. Julia and I just keep shaking our heads when people scowled at us, what is wrong with people?

I read a lot about Down syndrome in October, I read articles and then I read the comments made to the articles, and wonder why every single negative, rude, or hateful comment gets 68 thumbs up, while nice comments get 4?

The rude looks, the terrible comments, the women justifying abortion because of special needs, the surrogate mom fighting to keep the baby alive in her body because it may have Down syndrome and the parents do not want it born, trying to force her to abort because she signed a contract, and most people agree with the parents in the comment section? All of this tells me that people do not want children like mine alive and walking about them. Eugenics, so ugly, vile, and one of the worst ideas human beings have come up with.

What do I mean? Taken from Wikipedia http://en.wikipedia.org/wiki/Eugenics

Eugenics is the "applied science or the biosocial movement which advocates the use of practices aimed at improving the genetic composition of a population,"

Read more about it, I learned the word after Meghan was born, sure I heard it in sociology, especially when we discussed Hitler and Stalin...but I never had a reason to fear it. Knowing there are extremist advocates of this movement who would gladly kill my children if given the power makes my blood run cold (if I allow myself to think about it, I try not to).

Crazy Kris, come on, no one would kill your children? Is that so, there is a 92% abortion rate for women who have a prenatal diagnosis of Down syndrome, so people are exterminating children with Down syndrome by the hundreds of thousands already. They are fetuses in the 5th month, some a week away from being viable if born early on their own (sure premies have their own sets of issues too). Some were born alive after a failed abortion attempt and placed in back room to die alone. Should I stop now? Do you understand why I get upset when a woman and her children glare at me and mine? If you really delve into our society, you would not like what you see.

I read a blog today that even churches are turning kids with Down syndrome away, a church should be the one place that welcomes them without reservation. Jesus loved everyone EVERYONE, not just the cognitively average-superior, the beautiful, or the able-bodied. "Your children are disrupting our service, we need to ask you to step out". This attitude is one reason why I left church years ago. I thought it was my specific denomination, but apparently this attitude is shared by others.

So you see my girls and I walking towards you in a store do you smile and say hello? Look away as soon as you notice us and not make eye contact, turn around and walk the other way? Or stare openly and scowl? People who read my blog would likely say hello, many have children with Down syndrome too. There are also nice people out there who are very sweet to us, I am not saying everyone is unkind. It is the unkind peoples faces I remember though, they stain my soul with their ugliness.

Because it is Down Syndrome Awareness month, there are articles everywhere featuring exceptional people with Down syndrome; artists, actors, advocates, couples getting married, but there are very few about the realities of what our lives are like as families.

So we write on our blogs in hopes that someone may read what we have to say, that perhaps a glimpse into our lives may help people see how really ordinary we are, just parents like you, raising children, working, paying a mortgage.

The main obstacles we have in our lives come from those who try to block our children from being fully included in school, church, sports, and other activities. People who still prefer the "Out of sight, out of mind" scenario where my children are concerned. I feel sorry for them, their lives are closed off versions of what they could be, while they see me and my youngest children as weird or different, I see those unkind people as incomplete. I was incomplete before Meghan was placed in my arms almost 10 years ago, I never knew it, but looking back, I can plainly see it. I also have a long way to go, and I am all for learning more, life is about growth.

31 for 21 -day 8-Posting in memory of Renee

2010-10-08T11:15:00.006-07:00

A picture I took of Renee at the 2008 Down Syndrome Connection picnic

Today the Tucson Down syndrome community and the world lost a beautiful and very sweet little girl. Renee Blanchard passed away this morning due to complications associated with her cystic fibrosis. She was only 10 years old.

Renee was a little gal with lots to say, I was always so excited that she had the verbal ability to express herself, I thought she was amazing! I loved her voice, I loved her sweet spirit, but she was also strong and knew her mind! She was special in every way.

Our hearts are broken for her parents Doug and Georgianna and her brother Ryan, I know their lives will feel empty without Renee. We pray for them as they learn to live without their daughter and sister. I add my tears to theirs as they grieve losing their beloved Renee.

21 for 31 day 7-Happy 18th Birthday Julia

2010-10-07T17:55:00.006-07:00

31 for 21-day 6-Arizona Early Intervention Program (AzEIP) Family Cost Participation

2010-10-06T12:23:00.013-07:00

Therapy and more therapy, all three girls see three different therapists, we are so lucky to be able to have our ST see all three girls, ditto for our OT and the PT sees both Amanda and Kara. Our medical insurance covers some of the cost, Long term care, a federal program, covers the rest. Without it, I doubt my girls could get the therapy that makes all the difference in the world to them. We could not afford to pay the high fees ourselves, not many people can. We want what is best for them, we are their parents, we love them. We also pay very high insurance premiums and do not understand why the insurance cannot cover more for our girls, but they will not.

Meghan began physical and occupational therapy at age 4 months. Kara and Amanda did not begin formal therapy until they were 3 1/2 years old. Amanda and Kara had to learn most of the skills Meghan did when she was an infant-toddler. Their caregivers rarely took the time with them because in their countries, they truly did not believe the girls had the ability to learn. The chasm between Meghan's abilities at that age and theirs is wide and deep. Kara is filling the gap more quickly than Amanda, but Amanda does have Autism as well, and that gives her a few more challenges.

We had both little girls evaluated by Child Find after they came home. Both girls were given the preschool severe developmental delay "label", compared to Meghan at who age 3, was listed as mild preschool delay on her paperwork. I do not believe any of them are smarter or more capable than the other, each has her own strengths and weaknesses, Kara and Amanda were more delayed due to their life in the orphanage.

I know that therapy helped Meghan, and we instituted her daily therapy "homework" into all of our play as well. Parents are always teaching their children, so truly, it was not much different than parenting kids that did not need the extra help. The main difference ? We had the guidance of therapists, and they had the expertise concerning her delays and showed us how to help her best. In our case, early intervention made a world of difference, we have children to compare Meghan with, two little girls who never received any.

I am sharing this for a very important reason, for those wondering if early intervention makes a difference in a child's development at all. I am addressing the Arizonan legislators, the people who voted to cut the DES budget who oversees DDD programs, who in turn wanted to stop all early intervention in 2009 to cut their own budget. That February there was a vote by Arizona legislators to cut numerous essential services for countless Arizonans, their goal to save the state money on what they considered expendable services. Of particular importance to parents whose kids need the extra help were these cuts:

Eliminate services for 850 infants and toddlers with or at risk of a developmental delay $1,608,800.

Reduce or eliminate in-home services for 4,000 children and reduce or eliminate support services and allowances for children in out-of-home care $15,918,700.

Of course there were many cuts that affected older children as well, and many adults. That was before a public outcry halted their plans. The Arizona legislators and DES found out they could not get away with it, there were marches, protests, emails, phone calls. There was a clear message coming from parents, don't mess with us, we are used to fighting for our kids.

How could they just do away with early intervention? Even they admit that it is essential, important, so what were they thinking? From the azEIP website :

Why is Early Intervention important?

Early Intervention is professionals working in partnership with parents and families of children with special needs, to support their children’s growth, development, and learning. Research tells us that the first three years of a child’s life are critical years for learning. Early care and education have a long-lasting impact on how children develop. During a child’s first three years, it is important to focus on a child’s developmental needs and take advantage of your child’s natural ability to learn.

The state website says this, but the legislators and DES decided this was all horse hockey? Help me out here, how can they deny that early intervention is essential to children who need a little more help? It is simple, they feel children like mine are a drain on state resources, but if their needs can be met by federal dollars without the state needing to spend anything to get those federal dollars, then there may be some help available. If not, too bad?

http://www.azcentral.com/news/articles/2009/04/16/20090416dessuit0416-ON.html#ixzz11gr5l8xo

They felt that there were no measurable results, and wondered if it was worth the cost to our bankrupt state. A federal judge ruled against them and halted their plans, but did not stop them, instead of cutting services, they have instituted their brilliant plan of :

Arizona Early Intervention Program (AzEIP) Family Cost Participation

Early intervention was always free in AZ, the attending therapist billed the families medical insurance first and then the state paid the difference. However, most insurance companies would not pay for therapy for children born with Down syndrome, some saying it is a pre-existing condition, as if being a human being is a pre-existing condition, and others stating they only pay for therapy for someone who suffered an injury. Often the state paid the full amount. The costs are listed above, in the millions, not billions of dollars.

With the new health care reforms, I do not believe any insurance company will be allowed to deny coverage for children like mine, which should be good news to the states who are literally bankrupt right now:

http://www.disabilityscoop.com/2010/09/22/rollout-of-health-care/10336/,

The state will now charge families for early intervention therapy on a sliding scale, and truly the only families who will not pay a cent are low income families (those on food stamps-receiving welfare checks). I have friends who are affected greatly by these changes. For instance, for families making around $45,000 a year, each therapy session will cost around $80 (estimate). If you have multiple children receiving therapy like we do, you pay only for the child who gets the most help, the most expensive therapies. That would mean a family whose child gets 3 therapy sessions a week, like mine do, would pay approximately $240 out of pocket a week for therapy, which is a whopping $960 a month. We could not afford it with our already strained budget. I am betting other families cannot either, at least not for long; they could use savings and take out loans I suppose. It is all about saving money, isn't it? That is what we trade the futures of Arizona's disabled children for, saving money!?

My friends who are therapists are losing clients, and income, we already have a therapist shortage here, the results of the first budget cuts. We waited 2 years to get a PT for Kara and Amanda because there are not many left in the public sector and many have moved away.

I understand there is a prevailing attitude that people with cognitive and physical disabilities are a drain on the economy, a feeling that they take more than they give, the squander the good ole TAXPAYER MONEY with their incessant needs, and are otherwise called BURDENS on SOCIETY. (shouting, not me?) Something an old pediatrician said to us about Meghan when she was less than 12 hours old, that she would be a burden on our family, perhaps he meant, on himself or society? So it got me curious, what do they mean, a burden, how? I looked up the word burden and the very first definitions states: Worrying RESPONSIBILITY, a difficult or worrying responsibility. **the burdens of parenthood** Hmm, so a burden is a responsibility? So then, what is the definition of responsibility? “The state, or fact, or position of being accountable to somebody or for something.” It seems to me that being burdened simply means that people who do not want to care or to do anything are FORCED to care and to act. Laws force them to do what is right for their fellow citizens, the fact that we had to pass laws to get our children and loved ones released from institutions is not lost on me.

Americans with Disabilities Act, do you know that politicians are trying to do away with this law? Oh yes, it has been in the news. Why did they law get written? It simply is so unfair to businesses and THOSE people have the nerve to sue those businesses for not having access, or bathrooms they can use, the nerve (yes, being sarcastic here). They lose profit if they pay a contractor to put in an accessible restroom after all, oh, those people in wheelchairs...

I have been reading a lot about disability law lately, some right websites, some left, many in the middle, this one is said to be FAR left, well, according to those who are far right LOL. http://www.raggededgemagazine.com/garrett/scope.htm and the following passage is from their website:

The Americans with Disabilities Act Findings: People with disabilities as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally . . .
. . . have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypical assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society.

The continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous.

Fear , discrimination and prejudice, issues that have driven societies to do terrible things to people they feel do not deserve to live the same entitled life that they do because they view them as inferior, or perhaps they convince themselves of such, to justify their actions. Do you know there used to be laws in some states requiring people report families who tried to keep their children with cognitive delays home? Their neighbors would report the child and lawmakers would come and forcefully remove the child from their home, putting them in mental institutions. The parents had no say, often being forced to sign over guardianship of their child. There are thousands of stories you can find about this, it happened up to the 1970's, not that long ago really.

Those of us who have children with Down syndrome do not see them as a burden (most of us, I know some do, and often give them up for adoption), they are simply our children and we will protect, support, love and guide them just as we would our other children. To think that someone would come and take my daughters away from us wrenches my gut, can you imagine how you would feel? How they would feel?

However a person feels about this issue, there are federal and state laws protecting all people with disabilities now, but somehow many states, not just AZ, are bypassing some of them, particularly where medical and educational help is concerned. I am sure many high paid lawyers are helping them figure out how, finding loopholes in the law. Thankfully institutions no longer exist as they did up to the 70's, most were torn down after it was discovered that residents lived in deplorable conditions. Out of sight, out of mind, right?

It will be curious to see what happens in the ensuing months as more and more families are forced to drop therapy for their children due to the cost. I feel like we are taking giant steps backwards in disability rights, it worries me a bit, change happens so slowly sometimes, you miss the clues that something serious is happening, is this a trend? It is unacceptable to me that this has happened here, but then a lot of what AZ government has done lately is shocking to me.

What about the children in all of this? Will it change their futures, will they accomplish all they could have if they had proper help, or will they truly be that burden everyone complains about? If they are, who is to blame?

31 for21- day 5-too many cats

2010-10-05T22:37:00.006-07:00

Thor, Queenie, Hobbs, and Nightmare, Queenie and Hobbs found a home months ago. Nightmare and Thor did not, no one wants black cats. They are always the cats we love the best too.

My girls, all 4 of them, love cats, and this spring-summer we had a population explosion (no I will not tell you how many). My poor husband and sons are allergic to them, so we keep them outside as much as we can. The kittens sleep in the bathroom at night, complete with litter box, water, and a soft bed to sleep in. Two kittens are sleeping there now.

We have found homes and new places for most of our cats, from foster care, to a feed store that sells them, to real homes. We decided to keep the cats the girls liked the most. In the last two week two of our favorite cats have disappeared, one was very tiny with obvious cognitive issues and the other was physically disabled. Squirt never came home, Thor has been gone a day. He never strayed from home and since he is a black cat and it is October, well, I do not feel odds are in our favor that he will come home alive.

I called Animal Control, Humane Society, and looked on lost and found lists, nothing. I will check tomorrow and call veterinarians.

Meghan has been asking about them all day today, mommy has shed some tears. All of our other cats are quiet and seem sad today, I think they know what happened to Thor...they already seemed upset that we gave two kittens away on Sunday.

All of us feel badly about Thor Buddy, the name mommy called him. So no posts about my littlest girls tonight, mommy is just too sad to think of anything to write.

31 for 21- Day 4-Down Syndrome Pregnancy

2010-10-04T15:03:00.009-07:00

If you read our blog, you already know, we did not have a prenatal diagnosis. However many of my good friends did, and I would bet this guide would have been amazing for them during their pregnancies.

http://downsyndromepregnancy.org/

I have downloaded it myself, I continue to read about thoughts and feelings of others parents who also have children with 47 21st chromosomes. I love reading about other families and seeing their children's pictures, hearing about their challenges and milestones. I never grow tired of it.

I admire parents who bravely face all opposition and continue their pregnancies. I know that they usually have less people applauding their decision than those who support them. It is so sad that this happens, but it is human nature to reject the unfamiliar. I also believe that the people in opposition put themselves in our place and know they could never parent our children.

I know we had a flood of negative and ignorant comments following Meghan's birth. I remember some of them, others, I ignored, considering the source of the statement, rude people are usually rude about all aspects of life. I also saved every note, email, and letter that welcomed Meghan with love and acceptance. Those people did not know how much their support meant to us at during those raw first weeks.

It was not an easy transition, it was painful, it was scary, we did grieve the loss of the "perfect" baby girl we thought we were going to have. By the end of December my tears stopped (for the most part) and I had begun to accept my (our) new normal, I got the courage to explore what that life may be like. I finally bought books about Down syndrome and read them from cover to cover. I joined online groups, specifically:

Downsheart http://groups.yahoo.com/group/Downs-Heart/

And UpsNDowns http://health.groups.yahoo.com/group/UpsNDowns/

In Downsheart I learned about AV Canal and Tetrology of Fallot, two of the most common heart defects for babies with Down syndrome. Meghan's heart issues, ASD, VSD, and PDA were minor by comparison, but still a cause for worry for our family.

Learn about heart defects HERE

UpsNDowns is a group of parents with mostly school aged children. From that group a few new moms like myself formed our own tiny support group. I continue to talk to two of those moms to this day. UpsNDowns was also the group I was visiting when I learned about Down syndrome adoption in 2006 . I visited Reece's Rainbow after reading an email. Reece's Rainbow led us to adopt two pretty amazing little girls.

My fervent wish for families who feel they cannot parent a child with Down syndrome is to consider adoption rather than termination. There are hundreds of families who are waiting with aching arms to love and raise babies with Down syndrome. By choosing to give your baby life, you are giving them a family who is prepared to handle medical issues, early intervention (portage), special education, IEP's, and challenges that come with parenting a child who learns a little differently. Families like ours.

Adopting Kara and Amanda after Meghan entered our lives is such a tremendous gift, they are challenges for certain; as I type Amanda is YELLING at the top of her voice, something new for her, she is "talking". However, I remember 4 boys who did the same thing, in unison, and often, so small children are small children, and sometimes they get rowdy!

Just had to share-adorable video

2010-10-03T17:57:00.001-07:00

31 for 21- day 3- Meghan Changed our Lives

2010-10-03T10:33:00.008-07:00

How did having Meghan change me? You know I cannot even remember who I was before she was born, I have a vague recollection of that person, I know she was thinner, more fit, had more time to pursue hobbies and spend time eating lunch with friends...I think she spent too much time thinking of frivolous things (clothing, hair, the latest gossip) and did not take time to have many deep thoughts or conversations. She liked watching Oprah and Regis and Kelly and Entertainment Tonight, (shows I do not watch now)

How did she change our family? Having her made our lives slow down, since she was fragile at first, we could not just take her everywhere we used to go, unless she was going to a doctors appointment, she was home with me. My maternity leave was extended from 5 weeks to almost 2 1/2 months, I had to give up one job because they would not hold the classes for me any longer and would not allow Meghan to come into the classes with me, and my primary job was in jeopardy. My job as a fitness instructor used to define who I was, I was proud of what I had achieved, but even before Meghan was born, the bloom was fading on that rose. Having Meghan put my working life into perspective, it was a job, it helped us pay bills, but it no longer defined me, I was more than just a group fitness leader.

Our son Eric volunteered to drop some college courses and stay home with Meghan so I could return to work, financially it was a necessity, co-pays for all of Meghan's doctor visits were eating into our income. He was so good with her, and I felt safe leaving her with him. Meghan did not get released to be around people other than family until she was 5 months old, I was allowed to take her into my classes with me, but she was still excluded from day care, as children were/are germ carriers.

Tom was determined to come to all of Meghan's Dr appointments, at first the principal of his school was understanding, but after time went on and Meghan still needed lots of medical supervision, she no longer supported his days off and tried to forbid him to go. She began to look for reasons to find fault in his work, typical of a supervisor who wants to be rid of an employee. It became adversarial and he decided to find a new school to work for, it was hard to get later times for appointments because those filled up first, but we did the best we could. He ended up finding a new position, but I know he was happier with the younger students, and teaching middle school is always a challenge.

We are private people, in fact, besides holidays; people did not come here to visit us. We had children playing with ours of course, but my adult friends did not frequent our home, I had a social job for 25 years, having to interact with hundred's of people every day, and when I was home, I wanted it to be a haven, a place to de-stress and renew, I wanted solitude. Obviously the same held true for Tom, being with all those kids all day, peace and quiet was something he craved. Having Meghan literally forced us out of that comfort zone; We had to allow several people a week into our home weekly to get her the help she needed.
I think I am more patient with people who do things more slowly, from small children to an elderly person walking with a walker. I am more aware of people with disabilities in stores and events, I seek them out and make a point to say hello and to smile at them, I used to look away I am ashamed to say, never feeling quite comfortable, not wanting to say the wrong thing.

Socially we suffered some losses, friends we had known for years were devastated by her birth, we had to comfort them, obviously they were the ones who could not handle Meghan's extra chromosome, one by one they drifted out of our lives, it was not immediate, and it took a year or two. It hurt, it was confusing, but it was difficult to keep someone in your life that is uncomfortable around your baby. Some family seemed to drift away too, in fact, most people in our family have never met Meghan; Aunt's, Uncle's, my sisters and brothers (I have half siblings and a few never really have been involved in my life, especially since Mom and Dad died, some were hers and some were his, mostly Dad's kids ignore me LOL)...and we learned that there were reasons for every change in life, and it was time for us to find new friends to share our lives with.

Luckily we found other parents who also had children with Down syndrome, and we found support from them and they loved Meghan for who she was. The Down Syndrome Connection of Tucson was a lifeline for me, thank goodness for Kathy and her support, and for the parents who helped me through the first year (s).

I have found that it is not the person with Trisomy 21 that has issues getting by in this world, but the society into which they are born who creates the problems, the roadblocks. The misconceptions about who they are and what they can do are numerous. It is hurtful that some people are afraid of them, truly, what is so scary about a person with Ds? However Meghan was such a happy little toddler and she never even noticed how people reacted to her presence. Truly she had the most amazing laugh and her smile made the sun shine again. She loved us unconditionally, she adored her big brothers, you could tell she wanted to be like her big sister, and she changed every single one of us just by being born into our family.

When Meghan was a baby, I sometimes looked at her and saw Down syndrome; it took a while to see her as just Meghan. It was a thought that would go through my head; “She has Down syndrome” maybe a way to adjust, get used to the reality. She was just a baby like any other, she needed to be fed, changed, bathed, cuddled and loved. And Meghan adored us, every single family member shared in her adoration. She made all of us laugh with her antics, and all of us wanted to protect her.

So I learned that despite some differences, my girls are just children. Now I have three girls who have Trisomy 21, I can truly say that their behavior, besides some quirks, is exactly the same as children with 46 chromosomes. They get jealous, sad, and mad, feel pain, feel embarrassment, resentment, and every emotion everyone else has. Before Meghan came into our lives, I would not have known that, so she taught me, they all three taught me, that people are just people, despite minor differences in shape, size, color, cognitive ability, we are all members of the human race.

31 for 21-Day 2 _Having Meghan, changed our lives for the better

2010-10-02T08:58:00.012-07:00

So sorry for the belly shot, gotta love stretch marks huh? I was at home waiting for Tom to get ready to take me to the Birth and Women's Center to have our new daughter.

Before we had Meghan we were just a regular family, all of us relatively happy, no major health issues, just working, living, existing, challenges were there, but were not major ones. We were always on the go, always doing something, Tom or I were always taking one of our kids somewhere, the perpetual mom and pop taxi. I was working a lot, I had two different jobs when I was pregnant, fully intending on returning to both after Meghan was born. Tom was teaching in a school that he enjoyed, the children were sweet, they loved him. Everyone we knew was happy about our newest addition, they gave us baby showers and eagerly awaited her arrival. We got teased about not knowing what causes pregnancy, we got teased about our ages, but no one openly expressed concern in our social circle about their fears that we would have anything but a typical child, no one seemed to be worried except for me, because of dreams I had that as soon as Meghan was born, our lives would change forever.

A question we get all the time, did we know beforehand that Meghan had Down syndrome, and the answer is no, but we knew at my age, 41 at her birth (my birthday is in November) there was a risk. Despite the risk for Down syndrome, we refused amniocentesis, because we knew the test was not about knowing she had T-21 so we could be prepared to parent her, but instead was done to cover the OB's butts (malpractice) and to give the parents the choice of terminating the pregnancy. I will concede that there are a handful of OB's who truly want to help parents prepare, but I have spoken to hundreds of moms with prenatal diagnosis, and those doctors are seemingly rare. We opted for ultrasound monitoring instead, sure they miss things, but they are not invasive and are not likely to cause a miscarriage. We were not going to risk our infants life, and we were eagerly awaiting her arrival.

Even though my water broke (up high, just a trickle), my labor was slow to progress, so true to natural childbirth, they had us walk, we walked and walked, we came back to be checked, still at 3 cm, so they said go ahead and get lunch and come back a little later, I have back labor, I always have, due backward tipped uterus according to my doctors, so going for lunch was a bit of a painful experience. Back labor often makes a woman feel like her labor is further along than it truly is.

We went to Village Inn, I got my favorite sandwich, the Avocado Swiss Chicken, and we shared a piece of Key Lime Pie. Yes, when you have a baby with midwives, they actually let you eat during labor, compared to my first three children with obstetricians who had strict rules against it, who gave enemas, and shaved, well, you know, all so terrible, torturous, and sadistic...LOL. I hated giving birth in hospitals in the late 70's and early 80's. Hence midwifery for the last three by birth children! Oh yes, I know, the prohibition against eating is in case of complications and the need for a Cesarean Section, always wanting to cut us open those OB's (joking) The midwives felt my birth was hours away, but giving birth is hard work and having food to keep me strong was not a bad idea.

We got back to the birth center a few hours later, we actually went shopping at Toy's R Us too, and still no change, my labor progressed so slowly, likely because it had been 8 years since I had a baby, so the fast labor a woman could expect from having 5 children previously did not happen for me. We walked for most of the day, from 10AM until about 6 PM, of course stopping for lunch along the way, we definitely got in our exercise that day.

They gave me some black cohosh around 5 PM to speed labor along, talks of going to the hospital to have Meghan were beginning, since the water broke early that morning, infection was a concern, but her heart rate stayed constant and strong so they let me stay where I was. Even though I had some amniotic fluid leaking, the amniotic sac had not burst completely and doing that around 7 PM made labor progress at breakneck speed, if you have had back labor, you know how much fun it can be, midwives do not give epidurals or other pain relievers unless you give birth in the hospital, which we did not, so no drugs for mommy. Dilation went from 3 to 10 in two hours. I was relieved to get to the pushing stage. I am sure most moms understand that!

Meghan was born at 9:02 in the evening, after lots of slipping and sliding in a jacuzzi bathtub, I managed to help her come into the world. Tom helped with her birth, getting her shoulders out and holding her as she slid free. They placed her on my belly and I looked into her face and thought "Oh my God, she has Down syndrome" I knew immediately. Lots of thoughts raced through my head, "What will happen to our lives?" ,"How will people treat her?", "Will she ever read or write?", followed quickly with a prayer; "Please God, do not let anyone hurt her because she is different". All those thoughts were in the millisecond it took me to comprehend that her face did not resemble her siblings at birth, and it was clear she had Ds, crystal clear, I never had a doubt. I looked at her palms, saw that single crease on one, looked about the room, did anyone else see what I was seeing? I handed her to Tom and in that unspoken language of people married a long time, he read my face, looked at hers and he knew too.

Meghan after her birth, despite all that going on in my mind, I loved her instantly, and my mama bear protective impulses kicked into high gear, no one had better ever try to hurt my daughter.

Meghan's birth story is on the pages section of this blog. I wanted to share a bit about it here, but what I really want to talk about is how Meghan changed our family...for the better.

When she was an infant and growing slowly, having issues with her trachea, her heart defects and some pulmonary hypertension ( minor compared to some children with Ds, a tiny VSD, bit larger ASD and a PDA) it seemed like all we did was take her to doctors appointments, because of her trachealmalacia she had her immunizations done on the expedited schedule. instead of 2,4, and 6 months, they were given to her at 1,2 and 3 months. I wish we had not been so hasty and thoughtless about that, her poor immune system could not handle it and I believe it is part of the reason she developed an autoimmune disorder; alopecia aereata. Though it is sad to see her lose her hair over and over again, at least it is not life threatening and for that we are grateful.

Meghan had major hair loss on her right side but it is filing in, it is now falling out on the left again, and it goes on and on. She is also completely hairless except for the hair on her head, eyelashes and eyebrows, both of which have also fallen completely out along with her hair.

When Meghan was a tiny baby, we kept our hands washed all the time, they were dry and cracked because as soon as we applied lotion, we had to wash them again. No one who was sick was allowed in our home, Meghan was not allowed in day care, her trachealmalacia would worsen if she caught a cold. It could kill her if she got sick, we had to be very careful. Her stridor was so bad she terrified interns. We got tired of telling them she always had audible breathing. We took her to a teaching hospital and never seemed to see the same pediatrician twice, they also treated her like a lab experiment, bringing in doctors to check out her palmar crease or her epicanthal folds, it was making me angry.

I complained at home about my displeasure about the conduct of Meghan's team of doctors, my children heard most of it, as Tom was working. Julia came to an appointment with us because she thought we were off having fun without her... while they were busy checking the back of Meghan's head Julia said "She's not a lab rat you know" and told them loudly: "And her name is MEGHAN". Obviously I was complaining more than I realized, and Julia set them straight. I was still feeling emotionally raw at that point, and more timid than I normally was, even though they meant no harm, their behavior was insensitive, Julia saw what mommy was talking about and bless her heart, she wanted to pout a stop to it. I was happy to leave their practice and take Meghan to our primary care doctor, who was so much more positive and loving towards Meghan.

Meghan was and is a very determined little girl, she had to be just to get her little body to move, we had to teach her body to hold up her head, to rollover, sit, crawl, stand. Once she began to walk, her gross motor skills got better and better. Her overall development was different, slower, from her 46 chromosome-d siblings. Seeing her try and try again made me admire her gumption, no one could call her a quitter.

We also welcomed (usually with happiness, sometimes not) many early intervention therapists into our home. We joked that Meghan was the easiest child of our 6 because we had so many people helping us with her. We rarely had help in our other children's early years from family or friends, and having so much support with Meghan was a revelation for us. I could see that it was easier for my friends to have parents to fall back on to help with their kids, mine were gone and Tom's were too far away.

It was a gift but it also felt intrusive at times, the crux of therapy in the home is simply having people there several times a week who are not related to you in any way, there are clashes and uncomfortable moments. Some are ultra-professional and goal oriented and forget the child involved would not adhere to their rigid schedule, others were more open and caring in their approach. Finding people who are aligned with your parenting style can be a challenge too. I have never been able to abide therapists who try to force a child to comply. Want to see the definition of stubborn, try to force Meghan to do something, it is not pretty and the tantrums she can throw if you push tooo hard are explosive.

Meghan has had therapy since she was 4 months old, we took a break when I was getting chemotherapy and I was just too worn out to have them come in our home. Only one person has been with Meghan from the beginning, her speech therapist, who came when Meghan was nearly 2. There have been others who came, clashed and left, mostly OT's, who for some reason Meghan does not like, and who have been the most unbending and unreasonable of all the therapists we have had in our home. We are lucky to finally have one who can "go with the flow" with all three girls while stilll accomplishing her goals. You cannot be rigid when working with our trio. LOL

Learning to navigate with DDD personnel and services; Division of Developmental Disabilities and all the different people they have assigned to us as service coordinators has been a constant challenge. Some have been extraordinary and wonderful, some have been simply terrible. Thankfully we have someone wonderful now. I will talk about that on another day, as the state budget and how it affects services and attitudes of Arizona taxpayers deserves it's own post!

Suffice to say, all of us get PH D's in Down syndrome by the time our children enter school. If we did not know what to do when our children are born, we learn along the way, usually with help of parents who have older children, sometimes by making mistakes, but we emerge years later as completely different people than who were were when we first heard our child had Down syndrome.

How did having Meghan change me? You know I cannot even remember who I was before she was born, I have a vague recollection of that person, I know she was thinner, more fit, had more time to pursue hobbies and spend time eating lunch with friends...I think she spent too much time thinking of frivolous things (clothing, hair, the latest gossip) and did not take time to have many deep thoughts or conversations. She liked watching Oprah and Regis and Kelly, (two shows I can barely stand now). She never thought she could be strong enough to adopt either...who was that girl?

Will conclude this tomorrow.

31 for 21 - day one, the value of a person

2010-10-01T07:00:00.007-07:00

Yesterday all three little gals had a dental check-up. Kara and Amanda always do OK at doctor visits, I think they were taught to behave for such things at their orphanages, or else...both of them are pretty good patients, it is uncanny, and kind of makes me sad. A little orneriness is good. (wink)

Kara climbed up on the chair and cooperated for the most part. Amanda kept pushing the tools out of her mouth with her very agile tongue LOL, but our Meghan, well, she seems to believe that freaking out and being uncooperative is the best way to get an exam. We told her numerous times, if she would just sit there and let them look, it would be easier for her and then everyone else. After we got home she repeatedly held her mouth open to show us how good she can be. She was embarrassed about her behavior, and that is a good sign, maybe next time will be better?

The exam went the way it usually does, Kara's teeth were perfect, Amanda was good too, no visible cavities with either (most of her baby teeth are already covered in crowns), but Meghan had 3 baby teeth (that had sealants on them), with cavities in between the teeth. They want to sedate her and work on those three teeth in January, the closest appointment. My heart was already pounding at the thought of anesthesia for Meghan again. Tom and I were both afraid of that, she has been awful about us helping with her brushing lately and she also seems to have inherited the bad tooth gene from Tom and I. Yes, there is such a thing, Amelogenesis Imperfecta. I was told that mine was represented by very thin enamel and soft teeth. http://ghr.nlm.nih.gov/gene/ENAM What a great thing to pass on to your kids huh?

We take the girls to a pediatric dentist, he is good, his office staff is also very good. We are lucky to have great dental insurance for the girls, a primary which pays for most of their work and a secondary that pays for everything else. No out of pocket expenses for the little girls. High insurance premiums, yep. LOL.

The office was packed yesterday, children were laughing and playing in the little play area they have built for the kids. A playhouse that includes a fun slide, all but the slide enclosed in Plexiglas. When we came in the children were running in and out of the house, laughing and playing. Meghan got excited seeing everyone and ran to play with them, Kara followed her. Most of the children who were having so much fun left and went to sit with their parents. Two hid in a alcove built into the house, none of them would play with my children. Not one child spoke to them.

At first it did not register, I was watching Meghan slide down the slide and Kara was looking out and smiling at us, Amanda was firmly planted on Tom's lap, she does not do well in noisy places with lots of children. I was focusing on my children, then I realized all the other children had left and whispered to Tom, "where did all the kids go?" he said he noticed it too. I looked around the room and saw one mother actually glaring at me, I was stunned, what was wrong with these parents? Had they all taught their children to fear kids with disabilities? They were acting hatefully towards me and my children. I got mad, I wanted to say something, but did not, my girls were laughing, playing, and having a great time, so I pushed it back in my mind to mull over later.

We fear that which we do not understand.

That is the simple truth of that situation, and for some people, is that trepidation turns to anger as a coping skill, fear is hard to deal with, anger, well, we are better at that one. Could I have used that as a teaching opportunity? I suppose, if I wanted to cause a scene and speak up, sure, but my children notice angry feelings and I wanted them calm for their exams. I do not think the parents sitting in that room wanted a calm and sincere conversation about Down syndrome. I was so relieved when we were called back; at least the dental assistants and office staff are very sweet to us and our children.

I did not think about the behavior of those parents and their children until we got home. I had already been contemplating the reason people fear having children with disabilities, I had been doing extensive reading the night before, and maybe it also made me more aware of others reactions to my family.

The night before the girls appointment, I was reading over topics I wanted to go over in the blog this month, I found this website
http://www.religion-online.org/showarticle.asp?title=2706 and read about termination of pregnancies due to prenatal testing. Something I have tried to reconcile in my heart and mind since Meghan was born and I was asked endlessly "Did you know before she was born" fully meaning "Surely you would have terminated had you known". One of the books they discuss was written by a woman who chose to terminate: Testing Women, Testing the Fetus by Rayna Rapp (click on the link, it is a good article, upsetting to be certain, but eye opening)

The two passages I am sharing upset me the most, it seemed so simplistic, these women seemingly made the decision for purely selfish reasons, surely they were not that cavalier about the lives of their children? You can see very clearly that they talked themselves into their decisions, and it seemed so logical to them, and made so much sense at the time, I wonder how it felt later though? Truly, how should it feel?

These two quotes stood out the most in my mind and heart, while the author read one thing into their words, I read something else entirely.

"Are White Women Selfish?" Rapp analyzes and decodes the language of "selfishness" in the self-descriptions of Anglo women. One woman, who is characteristic of these interviewees, explains, "I just couldn’t do it, couldn’t be that kind of mother who accepts everything, loves her kid no matter what . . . Maybe it’s selfish, I don’t know. But I just didn’t want all those problems in my life." Rather than considering the possibility that such narrations reflect genuine conflict over the question of selective abortion, Rapp suggests that these women are unwitting victims of both pro-life propaganda and an atavistic ambivalence about the entry of women into the workplace.

We did not have a prenatal diagnosis, I was an AMA (if you were one, you know what it means) and they wanted me to do ALL THE TESTS, and I refused. As an AMA, I felt my pregnancy was a gift and there was nothing I was going to do to threaten my baby's life. I had 4 ultrasounds, routine blood tests, and saw the midwives every three weeks, but I did not do the AFP, and I certainly refused the amniocentesis they insisted on. I was prepared to be "One of those kind of mothers, who loves her baby, no matter what". I cannot understand anything else, it is who I am, I loved my children when I carried them in my womb and I loved my littlest girls as I carried them in my heart.

I had always been shocked when a person of faith chooses termination, how could they, when they believe all life is sacred? This next persons POV opened my eyes to the hows, but I still cannot understand their whys. So another quote from Ms Rapp's book:

People of faith are already interpreting such choices theologically, and their language begs for engagement. Carefully distinguishing the termination of a planned pregnancy from the abortions of "other" women, Christians are seeking theological justification for their decisions to terminate disabled fetuses. One woman explains that her pregnancy "interruption" was providential, another that God was testing her to see if she would be willing to return his angel to heaven. In a desperate attempt to bridge choice and faith, many who choose to "interrupt" their pregnancies (the common phrase in these cases) embrace the idea of the transmigration of souls, expecting that the terminated fetus will return in a subsequent pregnancy, wearing a new, improved body.

While I saw the first woman as being very self involved and scared of change, the second passage upset me. You see, when I look at my children, I see perfection. ALL of my children, not just those lucky enough to be born into a body with 46 chromosomes. My girls with 47 are beautiful, striking eyes, adorable smiles, impish grins, loving souls (most of the time *G*) and more than anything, they are just children.

Why do we fear having a child with Down syndrome so much in this world? Why did people call with their condolences with Meghan came into our lives? Why did I have to help so many people in my social circle see, really see, her humanity? Why did it take so long for a woman in my Silver Sneakers class to say; "You know, she is just a baby" quickly followed by "When I heard about her being born, I expected some gross deformity, everyone was so sad, but she just looks like any other baby with some minor differences. If anything she is funnier and more aware than most babies I have seen". (Meghan could not go to day care because of trachealmalacia, so I was allowed to bring her in her infant carrier into my fitness classes while I taught, she stayed with me in the class for a few months). It is not a surprise to moms who have children with Down syndrome that those 35 people grew to love and accept my Meghan? Because they most certainly did! In their time babies born with disabilities were hidden away in their homes or given to mental institutions, sometimes forcefully taken "for the good of the community", most had never seen a child with cognitive delays. Who said older folks cannot learn, then most certainly can and do. Meghan taught them!

Yesterday I saw this post on Facebook, and I copied it:

In the book, a deposed pope has gone through many trials and tribulations and it is the time of the Second Coming. When he meets the Returned Christ, the former pope is afraid and unsure much like the apostles when Christ first arose. This passage takes place in a mountain hideaway where children from a school for Down Syndrome are among those present. The Returned Christ is speaking about one of these children as he holds her.

"I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you--eternal innocence. To you she looks imperfect--but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune... More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand... I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"

I do not agree with everything this passage says, I do not see Meghan, Kara or Amanda as unopened rosebuds, instead they are fully bloomed roses complete with the thorns, imperfect as all humans are. I do not idealize their humanity as more than others nor do I see them as less than anyone else. My daughters are more like other children than unlike them, but they do have an innocence, a sense of wonder that we walking around with 46 chromosomes lose before adulthood, and such a shame too, as everything to a child is miraculous, and so many adults who happen to have Down syndrome see the miracles every day of their lives, most of us miss them. They take the time to, while we rush about like mad fools, chasing the brass ring, looking for something to own, something to help us gain status, looking to be wealthy, and adults ( I speak only of those I have known personally) with Down syndrome I know just want to show their love and have a strong desire for people to just SEE them as another person in this world, to speak to them and really take time to LISTEN to what they have to say. Why do we always notice differences in one another and why do we believe that those difference mean more than any other aspect of our humanity?

I would love to see less of the behavior and attitudes I saw yesterday in that dentists office, that is my most fervent wish.

Almost time! 31 for 21

2010-09-29T08:36:00.002-07:00

Grab This Button

It will be great to have a reason and purpose to post here, I get busy and my posts get so long, I am the classic rambling writer. I also have to get the posts done after the girls are in bed or before they wake up, and that is not always possible either.

I am hoping I can actually do all 31 days, we'll see!

Blood work A-OK

2010-08-31T07:42:00.005-07:00

We are left scratching our heads, if Kara's blood work shows no huge issues, why is she so lethargic? It is her innate nature to be a couch kartoshka? I do not feel like it is normal for a young child to want to lie down so much. I assumed her lack of energy was from iron deficiency, and prayed it was nothing worse than that. TSH normal in lower midrange, though I am wondering why the pediatrician did not order T-3 and 4 tests too.

Moms out there, what else should we look at for Kara and should we assume she is worn out from the heat?

Meghan and Amanda's blood work was also all normal, some low end, but normal. Amanda having the highest counts, makes sense, she gets sick less often than our other two little girls.

Down With You

2010-08-30T20:18:00.001-07:00

Wow, we got an award!

2010-08-25T14:39:00.002-07:00

Medical Coding

I am happy to know that people appreciate our blog. We are

honored to accept our award from Medical Billing and Coding:

http://www.medicalbillingandcoding.org/top_down_syndrome/#T_21_and_us

It was fun to see a few blogs of good friends included. There are so

many wonderful family blogs out there, thanks for recognizing ours.

I think all of us want people to understand that our children are

always children first! Yes they have Down syndrome, but they are

more like other children than different!!

Yearly check-ups, plays, school, weddings!!

2010-08-18T21:50:00.016-07:00

Everyone seems really busy but me, sure I do mom stuff, but I am not doing interesting stuff LOL.

Our oldest son Fred has been riding 25 miles a week, all in one day, it sounds like a long ride to me, but he says it is not that bad. He called Sunday and told me they took an hour off their time, that is amazing. Wish I could ride along, it sounds like a good workout, but I am not as young as I used to be either, I doubt it would be a good idea to start with 25-26 miles for me LOL.

I am hoping Fred and I can see" Bodies the Exhibition" this weekend, we have been planning to for a while, and it leaves next weekend.

The most exciting news around here came today; our son Terry is getting married on Friday!! He and his fiance' Anna have decided to go to the JOP instead of trying to plan a wedding on a shoestring budget. We are hoping an appointment is available, we will find out tomorrow afternoon. We are not at all certain we will be allowed to go in the office, the website says two witnesses. Tom and I definitely would bring our three little gals, and that puts us way over 2! Plus Anna's parents want to be there too. What can we do? We do not want to miss this very important day either. Maybe they will let us stand in the hallway and participate from there, I do not remember the office being very large. No matter how things turn out Friday (or another day if no appointments are available Friday), we are very happy for Terry and Anna.

We have not seen much of Eric lately, busy time for weddings in the summer, he is the event planner where he works. We saw him and his GF Melissa a few weeks ago and had a nice visit.

Brian is currently in a play, 25th Putnam Country Annual Spelling Bee we have not seen it yet, we are hoping to make it this weekend. The reviews have been really good so far, he said the big review comes out tomorrow or Friday!

Brian comes over twice a week to help us with the girls, it is a huge help for me now too, especially with home schooling. It has been really nice to see more of him too, he is also really busy with work and acting.

Julia is a senior this year, I am still in shock over this, I remember the day the ultrasound showed that I was having my first daughter, the jubilation from the gals in my Step class, and the anticipation of dressing her in PINK, of putting bows in her hair. Today she came home from school with a baseball cap and jeans on, but she also likes pink...

She is still hurting from the car accident she was in January, the driver of teh car overturned and hit a tree. Her knee keeps getting inflamed and she is currently undergoing PT for bursitis and tendinitis. The PT thinks her meniscus is injured, and believes that her therapy will fail and she will need her knee scoped to check for soft tissue injury, I hope she is wrong, I really do.

Amanda has finally decided that drinking water is not all that terrible, I wondered when the incredibly hot Tucson summers would get to her. She does prefer lemonade to water though. We are so excited about her progress with drinking, I have been able to get her to give herself water 5 days in a row now, unheard of a month ago. Now to work on self-feeding, she is still refusing to hold her own spoon. One small step at a time, any bit of progress is celebrated here.

Meghan is growing up, it occurred to me that she was going to be 10 this year, I was not used to her being 9 yet! She saw me taking pictures of kittens and Amanda playing in the pool and said "Take my picture too Mom". She gets so goofy, sticking out her tongue, dropping her head, it is hard to catch her face LOL.

Meghan has been dressing in clothing 3 times too small for her, usually Kara's, which were hers two years ago. Kara is not built like Meghan, Kara has very wide shoulders. Meghan can still put on size 5's in some things, but the other day she was trying to put on a size 5 skirt and could not get it past her hips. I realized her hips were beginning to change, oh no, I am not ready for the big P, I am not.

Her behavior is often baffling, mood swings and inexplicable fits. I do not think even she understands why she is mad, she just is. Oh, but I hate puberty.

We are working hard on teaching her modesty, she drops trow in front of open doors, at the DSC swim party she ripped off her clothing to get her swim suit on, oh my, we had not addressed this before because it had not happened before. It is a daily thing now, when I fill up the kiddie pool; she rips off everything outside too. Yet another thing that may take a long time to teach my stubborn girl.

Kara in the bucket; she loves crawling into tiny spaces and this pink toy bucket is one of her favorite places to sit! Kara has been really lethargic lately, I do not know if it is the extreme heat this summer or not, but I am concerned about her lack of energy.

All three girls had their well child check-ups. I hate to say it; but the doctor is not thorough enough, he did not have us take off their clothing, did not check joints, did not check spines. All her did was look in eyes, ears, listen to hearts and lungs and do BP. When I see my doctor, he thumps on my chest, belly, checks reflexes etc. We think the ped is a nice guy, but we need a better doc for our little girls. We asked him for referral for the ophthalmologist, for hearing screens, and for the wonderful blood work. He asked me what I wanted him to check, (really??) I said CBC to start...then told him leukemia screen, thyroid, sigh.

The gals in the office gave me a nifty sheet for each girl listing height and weight for the visit, and then listed their percentages on the growth chart, the REGULAR chart mind you, not the one designed for children with Ds. I showed the doc the website a few years ago for the Ds charts, I just do not want to continue to tell him what he needs to do, he should KNOW.

I came home and put their height and weight on the charts I have for each of them. Meghan was 25% for weight and 75% for height. Kara was 60% for weight and 50% for height, and Amanda, who gained 4 pounds since last year, was at 4% for weight and less than 1% for height. We have been amazed at how much Amanda has been growing, but apparently she is still way under where she should be!

We decided to get the blood tests over with, Tom and Brian took Meghan back; my nervousness over blood tests makes her freak out, so I stayed in the lobby with both little girls. I waited for screaming and hysterics to ensue, but I heard nary a sound from my girl. She came out of the room with a pouty lip and eyes filled with tears. She ran into my arms and sobbed, poor sweetie, but somehow she did better without me, she falls to the floor and acts awful with me there. Brian said she buried her face in her shoulder and whimpered, they had to stick her twice too.

Tom took Kara and Amanda back after that, I was relieved I did not have to endure their pain but I also felt very badly that it was not me who took them back. All three girls have bruising on the arms. Amanda was so upset last night, she actually cried when we put her to bed. She never cries unless she is not feeling well, usually we put her in bed and she is asleep in seconds. I think it made her sad to have to get stuck with a needle.

I rocked Kara to sleep too, she needed hugs of reassurance, I can tell I am not the only person who cannot stand getting blood taken, I had blood tests every week during chemo and then every three months for 6 years, you would think it would stop bothering me, but I just hate it.

Can you tell how much Amanda comes alive in the water? It transforms her in every way, if she could live in water, I bet she would be completely content. We see her in the water teaching herself to float, kicking her feet, and we wonder, maybe they were wrong about autism, but once out it is clearly present, wish it was not.

If she is not in the water, she is on the dog, she has limited interests. Our cat Harpy loves to bug Amanda, but Amanda is very rough on the cats. They do not seem bright enough to stay out of her way. We have kittens who get thrown like shot puts daily, and they keep trying to play with her.

"But the cat came back the very next day.

The cat came back, we thought he was a goner.

But the cat came back; it just couldn't stay away"

With each passing day Meghan looks more like her sister, I remember thinking when Meghan was born that they would never look alike because of Meghan having Ds, but she looks so much like Julia did at this age. You catch glimpses, expressions, the shape of her moouth when she smiles, well, they are sisters afterall. When your little one is an infant, I think you see Ds more, as the years tick by, you just see your sweet daughter.
Julia 2001, The main difference between Julia and Meghan? Julia has her dad's eye shape and Meghan has mine. Yes, I also have almond shaped eyes, it is a family trait, only Meghan has eyes like mine. That includes the dark circles and baggies LOL. I always had them; bad allergies to my dad smoking, and no, no one smokes here.

Maybe Kara is so tired because she is in her bed bouncing at 2 Am? Squeak, squeak, squeak, and giggle giggle, guffaw. She does not sleep well at night, but wants to nap all afternoon. I cannot wake her up if she falls asleep, she is OUT. Yet I cannot get her to quiet down for bed, even when I keep her awake all day. I hope this is a phase. She is wearing Tom and I out. Right after we go in her room to give her water, a hug, etc, she starts to bounce again.

We finally have a PT to come and work with Amanda, we will meet her Monday. Hey, it is only about 2 years too late... Amanda is very close to being a walker, maybe the PT can help her develop some calf muscles, her quads and hamstrings are definitely growing.

The state is short PT's because of all the budget cuts, AZ is not doing well in many respects. I think our legislators need all the prayers they can get.

Feeling a bit more hopeful about school this year

2010-08-04T22:34:00.005-07:00

We enrolled all three girls in school this year, online charter, not a brick and mortar school. I was worried about Amanda; she does not have academic skills to speak of and is very young developmentally. What would she get out of school?

Last spring I spoke to the school about our concerns about the current curriculum, it truly had to modified to such a degree that the books were useless. I found myself going to my homeschooling list serv and wishing wistfully for regular homeschooling with our own curriculum. Those parents seem to have the answers, AZVA did not want to listen. I was extremely frustrated.

A few weeks ago we did an interim IEP for Kara and Amanda, it will be in place until October. Because their last IEP was done when they were pre-school aged, they both need to see a psychiatrist to have their eligibility to receive special education services reaffirmed. Some typical children with speech delay often will not need additional services in Kindergarten, though states likely retest to save money, who are we kidding. :P Even though we find it silly, you have to follow the rules right? We have no doubt that Kara and Amanda still have Down syndrome with significant delays, Amanda still has autism too...This gentleman will meet us at a neutral place and evaluate their girls strengths and weaknesses. With Kara he may be able to get a clearer idea of what she can do, Amanda on the other hand will likely go into her "I do not like strangers" mode, drop her head and ignore him. Depends on how friendly or engaging this man will be.

Last month Tom and I "attended"the IEP via conference call with the team, the drafts of the IEP's viewed on an Elluminate screen. Just one of the peculiarities of on-line schooling, all of the team live in the Phoenix area and getting together in a room was not an option.

They asked us if we thought Kara would be able to write her name by October? What? We said no way, they said what about a K? Sigh, no, Kara is in the pre-writing phase of development, of course we would love it if she could do this, but not even Meghan can write her name yet. (This year, it has to happen this year)

Amanda is very delayed, and no one could figure out an academic goal for her. We all decided working on attention span and eye contact would be a step in the right direction for Amanda.

Prior to the IEP we received the girls curriculum and I was very disappointed to see the books were basically the same as last year, with very minor differences. I knew at once that none of the girls could do anything on those pages, and being emotional I just started crying. I was told that some things were changing this year, and I was so excited about it. Work pages that our girls could do, YES! Alas, NO was the answer.

In my frustration I complained to the special ed teacher who called to set up the IEP drafts and she said "Perhaps you should just send them to a brick and mortar self-contained classroom". I told her I felt her comments were out of line and insulting, I believed that if the school accepted children with special education needs, then that school should accommodate the children with a usable curriculum. She was a bit flustered, I could tell, she said that they were working on a self contained type of online classroom for their kids in special ed. Of course I was thinking, strange, they are schooled at home, how will that work exactly?

Today their self contained classroom teacher called me and said we were going to be able to use a different curriculum for the girls. There is a program for children with autism we can utilize, I cannot recall what she called it, my memory sometimes, oh boy. Even though Meghan and Kara do not have a diagnosis of autism, schools have had success with the program for children with various diagnosis. She was also very excited to tell me that we will be getting Edmark reading program for our children this year. We had used Zoo Phonics, regular phonics, and none of these are working, so I am hopeful the program will provide us with the breakthrough we have been hoping for.

The little girls start school on Friday, I will check back and let folks know how they are doing, I am certain I will do some mommy whining along the way. Fingers crossed we have a good year.

2010-07-12T22:47:00.003-07:00

Grab This!

The Harris family needs you help in fundraising for their adoption. Please check out their blog, they are selling cars in the Tucson area and Lori makes beautiful jewelry and quilts.

http://theharrisfamilyest2003.blogspot.com

I have $33 in my FAMILY grant fund towards the cost of my adoption! Oh please donate towards the Harris Family Adoption Grant, $33? I would love to see that number increase, Valerie is waiting for her Mommy and Daddy!

Summer in the desert is just NO FUN

2010-07-10T19:16:00.008-07:00

Summer is terrible in the desert, the heat wears all of us out and none of us have any energy, except for Amanda, who always seems to be on the move. Every summer we all get a little grumpy too.

This summer it seems like everything is breaking, ever notice that appliances seem to go in three's, rather like movie stars...

Our ceiling fan lost it's light fixture the other day, we looked up and saw it hanging by the electrical wires, it was pretty scary. Tom got some parts to keep the lighting fixture up securely, but the fan motor arced and it could not be fixed, the fan had to be replaced. We got a new fan on-line and then drove by a lighting store later that day and saw that they were having a blow out sale, always happens that way huh, but I think we got a great deal and shipping was free, so we did not have to drive to look for a fan and waste our gas, right?

I cannot post any new pictures because my printer died and it had the card reader in it, the camera's USB cord is missing, and I am stuck, no pictures for now, I am having withdrawals. I also cannot print anything at the moment, and you truly do not realize how much you use something until you no longer can. The printer has a paper feed error, says there is paper stuck in it, we looked and looked, there is nothing there, so it is a computer chip error... I loved this printer and the thought of looking for another makes me sad and stressed, it seems like electronics are made to break after a few years, doesn't it?

Using our home phone is so frustrating, so many buttons are hard to press. Tom and I looked at the new ones, we were not impressed, they cost a lot and have less features than the phone we have now. I want a phone like my old one, did I mention I am not a fan of change. And no, I will not use a cell phone as a home phone, I do not believe they are safe, check out the news on brain tumors and cell phones, having had cancer, I take those reports seriously. If you use a cell phone a lot, please get a Bluetooth, or use it as a speaker phone, or text!!

Amanda has been sick for a couple of days; no cough, rash, tummy or bowels issues, or any other outward sign of why, just a fever. She seems fine now. I am hoping whatever it was, it does not go from person to person, a bad cold is going around right now. Today is the day we came home from Estonia after her adoption. So two years ago today, Amanda became an American citizen!

She lost one of her baby teeth and another is loose, even though she is tiny, and seems like a 2 year old, her body is definitely 5.

Kara is growing fast, I think there will come a time soon that she will pass up Meghan in girth, she wears size 5 in shorts and some 6's. Meghan can still wear both sizes in shorts herself. Kara's shoulders are wider than Meghan's already. She is big-boned. She got her communication device, and after using it a week it seemed like something clicked in her brain and she thought "Gosh, I should communicate my wants and needs" and all of a sudden, the stubborn stinker is signing "more food" over and over again. She is working on please and thank you and want. She also likes to use her device, but it is a struggle, we are all learning to use it more and more.

Kara also has taken to crying loudly and often, almost like a 9 month old baby would when they do not get what they want. I am thinking she is learning what it is like to express sad emotions and get attention and love. She seemed to shut that off in the orphanage, and it took a while for her to let the emotions out, to trust us with her feelings. Though I admit, her crying if she spills food gets tiresome, we cannot figure out why she is doing that again, it has been a year since she acted like that. She is the best cuddler ever, and will rest her little head on my chest while sucking her thumb and looks up with sparkling brown eyes. It melts mommy's heart every time.

I had read so much about adoption, and I thought, well, I have an idea of what to expect but something I rarely see talked about is how slowly the children with Down syndrome actually develop once home. Kara did learn to do things faster than Amanda, but neither of them is close to where Meghan was at their age. Amanda is very much like a infant to toddler, and Kara I would guess is like a 2 year old in many respects, including throwing temper tantrums when she does not get her way. Still, both girls are progressing and will continue to grow and learn, though sometimes I get so sad and frustrated and wonder once in a while who they would have been had their parents kept them, I can imagine two very different little girls, especially Amanda.

Meghan is acting very hormonal lately, I feel badly for her because in many ways she is like a first grader and yet she is also beginning to like tweenie films with love stories, she has always adored romantic comedies. She will skip along happliy and then fall down in a hissy fit, it is perplexing.

We are surviving summer, but it is just HOT HOT HOT here, I am sure most people can relate this year, but there is no way there is such a thing as Global Warming, just no way...right? ask the folks in Estonia and Russia what they think, hmmmmmm.

Can you help the Riebens?

2010-06-03T15:59:00.005-07:00

http://fromthetrenchesofadoption.blogspot.com/

The Riebens are bringing home two precious daughters soon, we know how difficult it is to raise funds for two adoptions close together, but two at once, that can only be done with many people pitching in. These two sweet girls deserve to live in a family, can you help them come home?

If it helps, there will be some amazing drawings too.

:o)

Saying goodbye to another breast cancer warrior

2010-05-30T15:02:00.003-07:00

An image designed by Kim Foltz in memory of Kathy

May 29th, I and hundreds of others lost a very dear friend to breast cancer.

Kathy was an exceptional person, always positive, caring, never had a bad word to say about anyone. She loved her family, even with stage 4 cancer, she rode her bike around Tokyo and attended all of her children's functions. It was not until December 2009 that she was forced to slow down a bit, brain mets....

Kathy and I never saw each other face to face, but we had many meaningful conversations about our common foe; breast cancer. She taught me a little about being an American living in another country, and educated a few of us on life in Japan.

She was an earnest supporter of our adoptions, and helped me be more positive when things went wrong, supporting me through the losses of two little girls who led us to the two daughters we have now.

As my Grandmother would have said; Kathy was a gem. This song brings to heart how it feels to say goodbye forever to friends, I will be OK, but I feel like a little piece of my heart dies every time I lose another sister to breast cancer. And each time, it gets harder to bear.

Please remember Kathy's children and all those who cared for her in your prayers.

Without you, the ground thaws
the rain falls
the grass grows

Without you,
the seeds root
the flowers bloom
the children play
The stars gleam
the poets dream
the eagles fly
without you

The Earth turns
the sun burns
but I die, without you

Without you, the breeze warms
the girl smiles
the cloud moves

Without you,
the tides change
the boys run
the oceans crash
The crowds roar the days soar
the babies cry
without you

The moon glows
the river flows
but I die without you

The world revives
colors renew
but I know blue
only blue
lonely blue
willingly blue

Without you

Without you, the hand gropes
the ear hears
the pulse beats

Without you, the eyes gaze
the legs walk
the lungs breathe
The mind churns
the heart yearns
the tears dry without you

Life goes on
but I'm gone'cause I die, without you
without you
without you
without you.....

Pictures

2010-05-20T16:12:00.014-07:00

Julia ready for her Junior prom! She looked beautiful and they had a really good time, even though she had to drive the minivan that night...:)
Amanda still sporting the barrette I put in her bangs when I am feeding her. She tends to
drop her chin down and her hair falls in the food. I am thinking of growing out her bangs and
just putting her hair in ponytails. Amanda is doing well, she is so healthy, and I am grateful
for that. She is getting taller, wearing larger clothing now, all three little girls are due for
their yearly physical, and we will find out how much she grew this year. She will likely
never be a big girl, but that is OK.

Our sweet Meghan when she was 1 month old. I wish I had Kara and Amanda's baby pictures.

I love this one of Meghan, I can see those big blue eyes she had when she was an infant. I have a feeling her little baby face will be seen less and less as she nears all the changes puberty will bring, I am NOT ready for this, no I am not. Yes, she has food on her chin, LOL

I took this when Amanda was sitting in the shade and it was too dark to leave in color, but
I could not skip this adorable little smile, could I? Amanda is trying to walk, but I think she
has lots of muscle development to gain before she does it all the time. She can stand up and
take 8-10 steps, but prefers to scoot and lately, crawl, to get where she wants to go.

When they are not bickering, these two are inseparable. Just like sisters! Kara can be rough
and Meghan is learning to stand up for herself, Kara is such a sweet little girl, and the best cuddler ever, but sometimes, oh boy, you wonder where the aggression comes from. Lately
she has taken to crying while looking at herself in the mirror, she is learning about herself ,
she is quite an actress!
Silly Kara, she is getting so tall and so big! She has more teeth in that little mouth than I have ever seen, and great teeth too, she has yet to have a single cavity. She loves to brush her teeth , I think it is the vibration of the toothbrush, she will brush for 5 minutes if we let her.

Amanda, our little oompa loompa, I am hoping she will continue to eat more table food and less baby food. She cannot self feed yet, but she has learned to chew softer foods, so that is great progress for her.

Meghan loves posing for pictures, she is growing up fast, I know from our other 5 older kiddos that childhood flashes by, we need to remember to cherish it!

Meghan is losing so much hair alopecia areata, I asked her if we should cut the length and she said no, but her hair is so thin right now, some of it feels dead too, so I know the hair follicle has died and that hair will be gone soon, but she is also regrowing hair in places where she lost some. She also has no hair on her arms or legs, so we are wondering if aolpecia totalis is awaiting her. Meghan has always loved hair, always running her hands over mine and her therapists . One does not like it and it makes me feel mad and sad at the same time, she is firm, yet gentle, so I say nothing, but it is keeping Meghan from bonding with her. By trying to maintain a certain aloof (thinking professional) demeanor when they are working with children is to their detriment in my opinion. They will never be completely trusted by their clients.

Grumpy mommy

2010-05-20T09:11:00.003-07:00

The last couple of days have been me in grumpy mommy mode, with my three youngest just doing everything they can to get into trouble. For the highlights; breaking numerous things, I just threw the items away instead of thinking about how to fix them, spraying sisters in the eye with “safe” carpet cleaner (Meghan to Kara, rinse, rinse rinse), pooping and deciding to paint themselves with it and then decorating to floor too (Amanda).

Then there were the two electronic devices that were put into a sink full of water (Kara),they still work, the numerous dollies and stuffies I find in the same sink, see Kara is confused, she thinks her toys, cups, bowls, and trash can only go in two places; the trash or the kitchen sink. Often the bowls are in the trash and the toys are in the sink. Giggling Elmo did not appreciate the kitchen sink, but it was far better than the toilet, and how many times can a electronic toy be immersed in water and disinfected?

Kara and Amanda got into the dogs water bucket outside, both of them smelled like wet dog, such a glorious stench! Amanda thinks it is such good sport to throw cat food all over the floor, or kitty litter, dear heavens, yuck. She seeks it out and giggles in joy as the smelly pieces fly.

Kara throws everything and I do mean EVERYTHING, and mommy has just had it, do you think they know I am tired and that is why they are being bratty? At first I patiently deal with it, (redirection, redirection, redirection) but there comes a point where I yell, yes, YELL, “STOP DOING THAT”, I know I flunk parenting 101 every time I resort to raising my voice, and it only makes the girls sad, and it does not stop the offense they were yelled at for. This week I am just fed up with the constant supervision, never being able to just relax and have peace and quiet for even 5 minutes. My girls can create a huge mess in seconds, it is an art form for them, if you have young children; you know what I mean.

So in the midst of chaos, my son Brian and I giving baths and cleaning up the poo off the floor (Brian is the girls new respite worker, and this week was his first week, and did he ever earn his pay!) the phone rings, it is my dearest friend, she is very familiar with my two youngest girls fondness for playing in poo, as I have had to hang up dozens of times to clean up somewhere, usually the wading pool, and can I say ICKY POO. Cleaning up poo all the time is not my favorite pastime. So I tell her we are having quite a morning, and my son is learning quite quickly how fast his sisters can turn calm seas into a tsunami. As I am telling her about the morning she says it, the dreaded phrase I just hate hearing: “You know what, you are a saint”. Oh no, OH NO, I surely am not, and she says very sweetly “You are one to me”.

I hear this so often; you are a saint, an angel, one of God’s angels and so on and I am not, I am imperfect and challenged and trying my best not to drop the ball. Now I know these folks mean well, but to quote a line from Julie and Julia; “Stop calling me a saint, it just makes me feel like an a**hole”.

I am not anything near a saint, and it does make me feel small every single time a stranger or close friend says it to me. It implies I am Godly and kind, understanding, and patient, and while I can sometimes be those things, I am also frazzled and grumpy.

Being the mom of children who learn everything SLOWLY, need a lot of repetition and don’t exercise good judgment (hey, isn’t that most kids?) can be draining, there are days I wait impatiently for my husband to come home so he can take the reins, and I can have some peace, but ladies, you all know, you still have to do half of everything anyway, right? My favorite times are when my sweet hubby takes all three little girls shopping so I can just sit and enjoy the quiet. Then an hour later I miss everyone, LOL. I need a mom myself, one who will come and tell me to go to the store, hands me $50 and pushes me out the door, because I never leave this house. I am suffering from too much weight and too little clothing because nothing fits, I wear the same three things over and over again and I am so tired of them and being overweight, another reason I need to get out, I miss my exercise classes!

So Brian can come and help with his sisters now, and mommy needs to learn that she can leave them here and go someplace else instead of staying home and trying to get laundry done while he watches his sisters, someone has to watch my busy rascals while I am outside, they just get into too much trouble otherwise. It is a tremendous help to have him here to do that, but come on, it is not fun for me, its housework!

My goal FOR MYSELF is to find a gym I like, enroll and get out 3X a week to a class. It will solve my weight issue (in two years LOL), my need to interact with people who can converse with me, and it will be time away from my little girls, which will make all the poo and repetition OK, or that is my hope. I suppose I can also walk around the track at the park and that is free, but I need to be around other adults too.

I have forgotten how important it is for moms to have time alone, it has been 2 1/2 years since I was away from home during the day and it was not for a doctor’s appointment or an evaluation for one of the little girls. I knew I would sacrifice my personal free time when we decided to adopt Kara and Amanda, and we also school Meghan at home (Kara and Amanda are enrolled in on-line charter school Kindergarten for the fall too), which is very stressfull and is blessedly done for the summer, Yay!! However this week has shown me that I cannot pour from an empty vessel and it is time for me to take better care of myself. It will make everyone happier I am sure, because this week, I did not like myself, not at all.

What Would You Do?

2010-05-20T08:23:00.003-07:00

This video is making the rounds on blogs of other parents who have children with Down syndrome. I had a few FB friends say they would not watch it because it was appalling, and exploited the young actor in the film. I disagree, as he was a willing participant in the experiment. I do believe though, that it had to hurt to hear what the belligerent actors said regardless of being in on the scheme, how could it not? I wanted to give Josh a hug afterwards.

I think it showed how most people respond to verbal attacks on someone with a special needs. They look away and try to get away as fast as possible. Likely because so many people are afraid, this world can be dangerous and you never know what kind of reaction the disgruntled or rude or simply ignorant person may have. Does he have a gun? A knife?

HOWEVER, I know how I would have reacted, I would have been in the persons face and defending the worker. I have always been protective, but even more so now. What would you have done, would you have said "I do not want to get involved" ? Next time you see something like this happen, think of this little video and how it made you feel to sit and watch people do nothing.

Please AZ voters, vote yes on Proposition 100

2010-05-14T12:01:00.003-07:00

You can click on the picture to enlarge it

Living in Arizona

2010-05-12T08:27:00.005-07:00

Arizona is in the news again, and not for any good reason. I know that there are folks firmly on each side of the immigration bill debate, and I hate that people are proclaiming Arizonans as racial bigots, because folks, that simply is not true. Furthermore I would love to point out to the myopic that the people of Arizona did not pass the immigration bill, our government did so without nary a query to it's populace. We believe it was a knee jerk reaction to the murder of a prominent rancher who lived near the Arizona and Mexico border. Of course our porous borders have been an issue for decades.

For the first time in a long time I am ashamed to tell people that I am from here...

What do you say when you can't say anything?

2010-05-11T23:47:00.005-07:00

(I am going through drafts and finally posting them)

Truly, so much has been going on in our lives and most of it is something we cannot speak about for various reasons. So I log on to write a blog post and just log off. When our lives are enmeshed with others, we have to honor their privacy.

The school year is winding down for all of us, I am so relieved Meghan will have a break from her online school, because it means I will too. I have a constant inner dialog going with myself about schooling at home, "Meghan needs to interact with same age peers" and "Our school district CANNOT meet my daughters needs, and she is not safe in their care". I never set out to be a homeschooling mom, I never thought I would be, but until our district can clean up their act, I cannot entrust another child to them, especially not a child with special educational needs.

Meghan's alopecia has progressed on her left side again, she is nearly bald on that side. Before now she did not seem to notice, but I spied her with a mirror last week, and she was looking up at that huge bald spot with tears in her eyes. I told her she was so pretty, she smiled a tiny smile at me. My heart broke for her and I choked back my own tears, doesn't she have enough to deal with without this? Now I know that hair loss is not life threatening, and I know it could always be worse, but this is my sweet girl and she is sad about how she looks. A very insensitive person asked me why I cared, since Meghan has Down syndrome, and already looked different, who cared about her hair? Some people are just so clueless, truly. Meghan is a little girl first, and girls like to feel pretty. It is likely the hair will come back again, I keep praying for remission of her alopecia, perhaps if more joined me the prayer would be answered.

I am at wits end with Kara's obsession with food, I have taken to putting heavy objects in front of the fridge to prevent her from opening it repeatedly. She does not seem to know when she has had enough food and she is getting too heavy. I have asked her OT and ST if they have any suggestions to get her to stay away from the kitchen, they all say they are trained to help kids eat more, not less. Any suggestions? It is 12 hours of constant supervision and it is taking time away from her sisters. I am sure she gets weary of hearing "Out of the kitchen Kara" . I have taken to making her sit on the floor just outside of the kitchen to wait for her meals. She wrings her hands and whines if she does not get her food often enough.

Prayers for a courageous little girl please

2010-05-08T18:13:00.001-07:00

She is truly an amazing little girl, living for years with a heart that should not have sustained her life and now surviving open heart surgery which has been wrought with so many complications. God has truly been with her, please pray for her and her family.

Transitions, sadness, pain and loss, regaining hope

2010-04-19T18:16:00.004-07:00

My late parents, Laquita and Rex

Sometimes life is about loss, and sometimes that loss can immobilize us. Coming out of the pit of despair and looking up at a sunny sky through the back cloud that covered it for so long and feeling hopeful again does not just happen. It takes emotional strength and growth.

Oh April, it is a difficult month for me anyway. It reminds me how easily life can turn on a dime. I just passed my 7 year breast cancer diagnosis anniversary April 15th, or as most of my survivor friends call it, Cancerversary, anniversary is a bad descriptive word for having survived a cancer diagnosis (I always say in my mind, "so far"...). Linguists need to think of a new word to describe each year that ticks on after catastrophic illness attempts to take your life! On one hand I celebrate those 7 glorious years, the tremendous gratitude I feel when I wake up, still living, breathing and loving, the wonder of living life never goes away completely. I say a little prayer of thanks every single day.

When I was in the hospital in 2003 a very good friend at the time was losing her father to congestive heart failure, he had been ill for a long time. He died the same day I had a mastectomy, at the same hospital. She did not want to visit me, I still remember our mutual friend pushing her through my hospital room door. I was not weeping in sadness over my diagnosis, I was rejoicing that the cancer was gone, I was calm and well, on pain meds, so i was feeling pretty good. I saw the fear on my friends face, then the sorrow, and finally relief, all chasing each other in rapid succession. She said "Well you don't look bad at all". Her father passed away sometime after her visit. I loved my friend, we had been through a lot in the long years we worked together and she was very dear to me, but my having cancer lost her to me, I believe it was the association between myself and her fathers death, I will never know, but she stopped calling, emailing, or visiting. His funeral was a couple of days after I was released from the hospital. I attended it with drainage tubes still inserted into my newly flat chest. I hated to go and pull any attention away from the family, but her friends were also mine and they were scared for me too, and maybe that stung her a little too. Attending a funeral right after being diagnosed with cancer was extremely difficult for me, the days that followed I thought constantly about death and dying and I was depressed. Would that be me in a year? We had just come from my breast surgeons office, he was so sad for me, you could tell he did not think I had much of a chance. He warned me that I could not have any reconstruction for at least a year, just in case my cancer came back.

Still, I survived all the trials of cancer treatment, what many call my Hero's Journey. I did not emerge from it the same person I was before, not in mind, body or spirit, everything for me changed. Friends fell away, my job of 17 years finally came to an end, and it was no ride in the park; new managers every few years, new owners, changes in the fitness world...

I made many new and wonderful friends via an on-line BC support group I inherited. I also lost many of them to breast cancer. A beloved person in my life said to me, "Why do you put yourself through leading a group like that is such a downer, you should quit". This after I told her I lost another beloved BC sister. I told her that each one of those wonderful women supported me in dark days and I tried to do the same for them, in many ways they are like family too. I do not believe that anyone who has not been diagnosed with and survived a life-threatening disease could understand why I feel committed to the women in my support group.

This person however, she should understand, she has been through a lot of trauma and illness in her life. But whereas I reached out for support because I knew I could not survive without it, she withdrew into herself and wallowed in the fear and pain, and in doing so, has become a person I no longer admire or even recognize. She does not know joy, but instead chooses to be bitter and to blame everyone for her misery. I look at her and I wonder, what happened to her heart? I pray she will heal and let her joyous self reemerge, I miss her.

Adversity can shape who we become, I know this to be true, and I am certainly not a perfect person, more a work in progress.

World Down Syndrome Day

2010-03-20T21:17:00.005-07:00

Yes, I have been thinking about this day since January, and for some reason, the idea bothered me. You see, we celebrate our girls uniqueness every second of every day. We are a family of 10, 3 of whom have Down syndrome, we belong to numerous groups on-line, the local group here in Tucson, and we have hundreds of friends whose children also have Down syndrome. Having children with trisomy 21 is normal for us, it is our life, they are our daughters, and so, when there is a day set aside to celebrate them, we are scratching our heads. We do not need a day set aside to marvel at being their parents!

OK, so I am likely looking at this wrong, what the day is for is to get others to see how wonderful our children are, but I unless you actually have a person with Down syndrome in your life, you will never know the joy, the challenges, the love, and the frustrations, and the pride when they learn hard earned skills.

You can read about dozens of families, you can see TV specials, and Youtube videos, but you will not live the lives we do.

I do not think people are good at envisioning lives different than their own. You can look in our windows and think that you could never do what we do, that perhaps our lives are more complicated than yours, that we give up too much for our kids, and perhaps you cannot see sacrificing the life you have now for one like ours...the truth is, I do not see my life being much different than it was 20 years ago, being a younger mom with active boys who broke things, fought, were always active (until we got a gaming system anyway). Small children require lots of energy to keep them safe and happy, my daughters require no more than a typical child would. The biggest difference to me is the development of my 3 youngest girls compared to their 5 older siblings.

When I had my first, Fred, he followed the developmental charts like clockwork, in fact he was pretty much spot on for every single milestone. Terry, my second, walked a tad later, talked a lot later, but did everything else "on time". Eric did everything early; crawling at 6 months, walking at 9 months. Brian and Julia were about the same as Fred, though Julia talked before any of her brothers. They all said it was because she was a girl, and girls were always talking, I am sure I do not know what they meant.....

Then we had Meghan, we learned that we could not take the developmental milestones for granted with her, she would actually need to be taught to do most of the things our other children did on their own. The main issue with Meghan's health was a floppy airway (trachealmalacia) GERD, and very low tone (hypotonia) Her floppy airway meant her oxygen saturation was lower than your or mine, in the low 90's, sometimes dipping into the high 80's. This meant she did not have the endurance to be a very active infant. Added to that was hypotonia, which made it difficult for her to learn to hold up her head, roll over, sit up. She had physical therapy from age 4 months. With therapy we helped her muscles get stronger, her nerves to "wake up" and send the message faster to the muscles so that she could do the things she wanted to do, therapy does not "cure" hypotonia, but it does improve it. Meghan was also hypermobile, (very flexible and loose jointed) pretty much goes hand in hand with hypotonia, and we could not pick her up like we did our other children, her joints would pull apart slightly.

Each and every milestone our children met was celebrated, but we all did the happy dance when Meghan finaly mastered hard earned skills. Having her actually showed us how much we took our other children's development for granted and what a miracle having a child with no special needs truly is. We embrace each of our children for the individuals that they are, and all of them are special too.

Happy Saint Patricks Day

2010-03-17T09:20:00.003-07:00

I know the day will be lost on my three youngest, in fact, I am certain my husband and Julia forgot completely, no trace of green on either one today! It was always one of my favorite days growing up! I will show the girls a little cartoon about it, I am a wee bit Irish, so Meghan is too, not certain about Amanda and Kara, but I kind of doubt they are LOL.

Today is also Anna's birthday, Terry's girl friend, Happy Birthday Anna. I hear Amanda from her room, the day has officially begun, all the little girls are awake and ready for breakfast!

The girls this week

2010-03-10T18:03:00.020-07:00

I tried hard to get one of all three together, they refused to sit by each other, so this is the best I could get! Little stinkers.

Amanda is walking to mommy. She is taking 10 or more steps at a time now. I think I was right, she will be walking by her birthday! The OT said today "I have a feeling she won't just walk, but will run". I agree, Amanda is FAST, and I will also be running to get her, maybe I will lose some weight chasing her too.

Today I set out to get some good pictures of Kara, I can get plenty of Meghan and Amanda, but Kara moves, ducks, turns her head and does not cooperate. So most of these were taken today, some of Meghan and Amanda were taken in the last week or so. I adore Kara's brown eyes, I will forever remember looking into them the first time we saw one another in Vorzel. For me it was love at first sight! Finding her was a miracle for me, for us, we went through hell to adopt in Ukraine, bringing her home was a gift from God.

Put that thing down mommy, I do not like pictures!

Meghan loves her Barbies, she said, "No not my picture, take Barbies!" They both had bad hair days.

Happy Amanda, she has begun to smile for the camera, she adores getting her picture taken most of the time now. She is so dirty here, from playing outside and eating dirt! Ah to be a little kid again. :o)

Had to do my color correction again, even though Amanda's skin looks almost normal again from her carotenemia, when I take her picture with flash, she turns a nice golden yellow. Her skin has trapped the pigment, it will take a while to resolve...especially when she loves carrots, squash and sweet potatoes so much.

Amanda's face looks so round in her pictures, though she is still very tiny and very skinny, despite the pudgy face. We were wondering today if she stopped growing completely, but she has outgrown some clothes and gained 6 pounds, so we know she is growing, she just may stay skinny, wish I were her.

Kara the couch potato, what do do with this little munchkin?

Beautiful Kara! When we adopted Kara I was amazed how tiny she was for a 3 year old, and now, I am amazed at how big she is for a 5 year old, she is growing like a weed! Her bone structure is very large and she is very heavy. She is also chubby, she is so happy to lie down and pretend to read a book. (Time to get get blood work for anemia and hypothyroidism, don't you think?) She is lazier than my sons were in in adolescence.

Kara is a funny little girl, always laughing and happy, but she sees my camera, and her face goes blank, wish I knew why, it is so hard to get a smile from her for a picture.

Cover model! This picture turned out so good, Amanda looks like an angel!

My pretty little Meghan in her leotard, she found this in my old Ebay bins from a couple of years ago when I used to sell new and used children's clothing. She put it on and then grabbed my camera, and told me to take her picture, she posed for a bunch of them, this was my favorite!

Meghan's alopecia is on the rampage again, alopecia is like that, it progresses and regresses with no rhyme or reason. We though we had helped with a gluten free, casein free diet, which has improved her behavior and overall health, but the hair loss, well, it gets depressing for me, but as long as it does not bother her, then I will not let it get me down. What is more upsetting is the way people stare at her, OK, she already has Down syndrome, so people do stare (wish they would try harder to be subtle about it, she is beginning to notice) but to have this hair loss too, well, people are NOT nice sometimes. Her left side has 40% hair loss, and the other day I saw a dime-sized spot on the right which filled in completely, but was totally bald two years ago, so I am not certain what to think, will the right go now and the left grow back like before, or will she finally lose all of her hair?

She has very little body hair, her arms and legs are smooth, she still has most of her eyebrows and eyelashes. Having been hairless myself during cancer treatment, not having lashes means every little thing gets in your eyes, I hope she at least keeps her lashes. She has lost both brows and lashes before.

Just too tuckered out to stay up, these little girls can fall asleep faster than you can blink sometimes. LOL Amanda on the left, Kara on the right. They cannot sit near each other without hair pulling when they are awake, but seek each other out when they are tired, go figure!

Amanda is slowly blooming like a beautiful and rare flower. All of us are amazed at the changes in her personality, every week she opens her heart a little more to love, and she is learning to express her affection without the fear she used to show. today she kissed her OT on the cheek! She still has many repetitive behaviors, grinds her teeth, breathes heavily when she is stressed, she still has autism BUT....she is doing so much better.

Kara and Amanda are too fond of rocking and bouncing. I wonder if they will ever stop? Whenever they hear music the start bouncing off the sofa cushions, they usually do it on beat, completely synchronized! :o)

What is normal? One Chromosome Unites Us

2010-03-02T20:30:00.007-07:00

When we had Meghan, people felt compelled to tell us stories about friends and friends of friends, cousins, aunts, uncles, all who had someone with Down syndrome in their lives. I actually loved hearing all of the stories; I was hungry to hear that the children grew into adults who did "normal" things.

We use that word a lot as parents; normal, "Is it normal for her to eat like that, sleep like that?” The opposite of normal of course is abnormal. I cannot think about the word abnormal without thinking of Young Frankenstein; the part where Igor gets a brain for the "monster" and picks the A.B. Normal brain. The doc was rather upset with him, but if you saw the show, you know that brain worked pretty well for Frank, in a round about way. LOL Hmmmmmm.

We joke here that none of us in this family are normal, and we are glad we are not typical of everyone else, how boring. Sometimes it gets us in trouble to be independent thinkers, but I would rather that than the alternative, we do not intend to maintain the status quo, heaven help us, no one should considering the state of our world. We embrace diversity, individuality, and cherish each person in our family for the wonderful person they are. We respect one another, even if we do not always agree with the others POV. I like that word, RESPECT.

This is one of the reasons it is difficult for me, for us, to comprehend the reaction some people have to our youngest family members. Meghan, Kara and Amanda often get mixed reactions when we are out as a family, and I will report to you, that if you are the person who rudely stares, nudges your friends to also stare, and begin to whisper and laugh derisively, then you will get 7 angry scowls from a very protective family. You see, we see you as unkind people with poor manners. As unenlightened people and we pity you for your ignorance. You cannot and will not see that we feel blessed to have our three daughters/sisters in our lives, you just see through your own bigoted eyes.

You believe that my girls are not "normal" children, and that makes you uncomfortable. Your behavior will forever bring to my mind a verse in a song in "Beauty and the Beast" the "Kill the Beast" song. Indeed, I sing this to myself whenever I get rude reactions to my girls (thankfully we usually get very nice people interacting with our family)

We don't like
What we don't understand
In fact it scares us
And this monster is mysterious at least
Bring your guns
Bring your knives
Save your children and your wives
We'll save our village and our lives
We'll kill the Beast!

This is what families do to children diagnosed prenatally with Down syndrome (and other conditions and syndromes), they kill them via abortion, I know you will use the words “terminate the pregnancy”, but folks, it means the same thing, look it up, to terminate somebody means to murder them. I have read your reasoning in blogs and articles for terminations of your pregnancies, some of you have heart wrenching explanations; I have cried tears of sadness and pity for you. I try not to judge, I am not you, but I can't help but think that if doctors, geneticists, and other medical professionals would stop painting such a bleak picture about babies born with Down syndrome, more of the children would have a chance to be welcomed into this world. If the families cannot raise their children there are hundreds of others lined up to do it for them! Adoption should be the choice over a 90% abortion rate.

I have spoken to enough women about their doctors recommendations following prenatal discovery of that extra 21st chromosome to have a pretty good understanding about what the medical community in general believes; that anything that is not normal is BAD. That they need to FIX it, so it will not be ABnormal. How do you fix a baby born with an extra chromosome? You do not, you get rid of them, because it is BEST for the family and the children will be a BURDEN to your other children after you DIE and it is NOT FAIR to them to bring their brother or sister into the world or in our case with no prenatal diagnosis, to being the baby home? I have no respect for a community who would believe this, and it does make me distrust most doctors. How can I entrust my daughters to you when you believe they never should have been born? How can you look into their beautiful faces and not see a whole person?

I believe that the attitude the medical world has empowered hate groups, it justifies their beliefs. They feel warranted in saying my children do not have the right to breathe the same air as they do. I have had the ugly truth hitting me in the face this week. Hate groups of any kind are difficult for me to understand, how can someone embrace that much vitriol in their souls? It takes a tremendous amount of energy to hate something with that much malice, they have to be exhausted, they work so hard at it…

In my heart I feel that people with this mindset are missing something essential in their souls, they cannot respect anyone who is different and they cannot love and accept anyone they see as ABnormal, and they teach their children to abhor anyone different as well, perpetuating a terrible cycle. Their intolerance is the basest of human emotions and it presents itself as a festering boil, suppurating on the skin of civilization.

What do we do to boils, we lance them and let the pus drain away, lest the infection take over and kill it’s host…but how do we teach tolerance and acceptance, how do we help the masses see that our children are always children first, who share more in common with them than they are different? How do we rid the world of it’s infection of bigotry? I am not immune, because I feel great animosity towards those who hate my children.

To those of you who call my children retards, morons, imbeciles, or any of the other words you have twisted into your hate speech I proclaim that I love my daughters, I adore them, I am so proud of them, having Down syndrome it is a small part of who they are, to me and those who love them they are normal, they are perfect, and they have my respect for I know they work hard for everything they learn. They are smart, funny, and wonderful human beings. I thank God for them every day. I feel compassion for you, for not being able to see what I see, to feel what I feel, you are missing one of the universes greatest gifts.

Does anyone truly listen when we advocate for our children?

2010-02-22T14:03:00.004-07:00

Yesterday I was part of a huge battle; a battle for the dignity of my three youngest daughters . It took place on Facebook and was waged against a group of teenagers who felt it was extremely witty to ridicule people with Down syndrome and other people with disabilities as well as liberal use of the N word and R word over and over again, some of their posts were depraved, sexual content, pornography, everything a parent would be proud to see I am sure.... They also copied pictures of people with Down syndrome off of every site they could and posted them, making fun of them. It wrenched my heart and offended me.

The problem with Facebook or any other social network is a persons ability to open a new account within minutes. Parents and friends of people insulted reported each racist and bigoted post this group made, and while one group would get shut down, these poor misguided and very hateful children would open another, bragging that no one would stop them from doing what they wanted. However, their identities could not escape the parents of the children they maligned, and they have had to face the consequences of their actions. A lesson we all need to learn I suppose, there is no such thing as anonymity while you are on-line. I do not think for a minute that they will be miraculously healed of their hateful bigoted attitudes. But maybe, just maybe this will make them think...

I went to bed with tears in my eyes, soul weary, just so sad, I am tired of fighting ignorance, hatefulness, bigotry, and stupidity. I want the world to be a fair place with total equality for every human being, I want something the human race is incapable of.

I woke up and believed today will be a better day, and then read about this:
http://www.newsleader.com/article/20100222/NEWS01/2220318

In part it said:
State Delegate Bob Marshall of Manassas says disabled children are God's punishment to women who have aborted their first pregnancy.

He made that statement Thursday at a press conference to oppose state funding for Planned Parenthood.

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican.

Another slant on the whole "Having this child has to be your fault" belief system, I have to say, their God is not mine, He does not punish anyone, let alone my innocent children. I am not going into the whole abortion issue, which is why he talked about this in the first place, I believe he is making a preposterous statement to get a knee jerk reaction, rather like the children on Facebook yesterday.

Truly, I suppose no one is without sin, I know that when Meghan was born an ill-advised Christian friend said to me;"You must have committed a terrible sin to be cursed with a Down syndrome baby". I was floored and sadly that ended our relationship.

Yes, it is not easy to hear your baby has Down syndrome, though my pain in hearing about my daughter was not that she was born with Down syndrome, it was the sadness knowing she would not be treated like a whole person by the majority of the world, that people would veer away from her and hateful misguided people would try to hurt her. We hurt that which we do not understand.

I look at my youngest three and see whole children, just as HF wanted them. I have never met a perfect child, all of them have different issues and quirks that make them uniquely them, but I think I have begun to live in a bubble, a bubble I created to block out a world that cannot and will not see the beauty my girls possess. I surround myself with friends who also have children with Down syndrome and subconsciously avoid others. The few people I let into my bubble have to love and accept my girls too. The others have the door shut in their face, I have no room in my life for people who carry hatred in their hearts.

How far is too far to protect our children? They have to live in the world too, to be a part of this imperfect and sometimes cruel world, where do we find balance in a imbalanced society? Honestly, I do not have an answer to that question, but I will be praying and dreaming about this for a long time, to try to find a solution that will work best for us.

Will you pray too?

TUSD Superintendent Dr. Fagen to Deliver the "State of the District"-more school budget cuts covered tonight

2010-02-15T13:40:00.002-07:00

Tonight, February 15

Superintendent Dr. Fagen to Deliver the "State of the District"
& Chief Financial Officer Bonnie Betz to present 2010-2011 school budget information

This meeting is especially relevant to all TUSD parents, educators, and community members who are interested in knowing the most current information on TUSD's future outlook and the school funding process for next year. The meeting is open to everyone and it is highly recommended that all School Council and SCPC members attend.

When: 6:00 p.m

Where: Catalina Magnet High School Auditorium

What is on your mind?

2010-02-12T15:05:00.005-07:00

Outside my window.... I am happy to see blue skies once more, I love the rain, but my girls were stuck in the house all day because Amanda cannot walk, and sitting in a freezing cold puddle of water is not a good idea. Kara cannot take cold weather and lasts outside about 5 minutes, Meghan could sit out in it for hours if she had a Zune to watch, she loves her hand-me-down Zune.

I am thinking...about human nature, this week some of the stories on the news and newsletters I receive have wounded my heart, I often feel I have heard the worse possible story and then another crops up that shocks me to my core. We humans have been preying on one another since the dawn of our existence, and all the modern technology we live with has not evolved our violent tendencies. I am saddened and often wonder if we will ever change?

I am thankful for...my family, always and forever.

Today Amanda played with a baby doll, she hugged it, licked it, giggled, and stared into the dolls face, played with her hair, tugged on her dress. SHE PLAYED with a toy in a meaningful way and my heart rejoiced, she did not know how to play when we adopted her. Even Meghan realized how significant that moment in time was and beamed one of her glorious smiles at me. Despite being sad about the state of mankind, having my children has been the greatest blessing to me.

I am learning...that I can speak up about injustices even if it is not a popular subject; even though I am certain others will disagree and possibly be offended by my point of view. I detest the terms "Conservative" and "Liberal" assigned to anyone who does not agree with the others ideology, I have been called both, I am neither. I would be ecstatic if those two terms left our countries language, to me, their use is as offensive as the R word is.

From the kitchen...the sink of dirty dishes calling to me. Julia is out of town at a choir event, and her job becomes my responsibility. Once we eat lunch, I can get that done!

I am wearing...my pajamas, yep, still in them, been a busy morning playing with my girls, homeschooling...

I am creating...Meghan and I made winter pictures yesterday, we had foam stickers of snowflakes and snowmen and she enjoyed putting them on her blue paper. I left her to try one by herself and she decided to place dozens of snowmen on her picture, some upside down, some sideways, her very own work of art!

I am going...to see Brian in a new production on Valentine's Day. Tom, the little girls and I will be attending.

I am reading...my new Body and Soul magazine, a yearly birthday gift from my friend Becky. I have been reading a lot about print materials becoming a thing of the past, I have to say, I do not think an electronic device will ever take the place of a old book for me. Besides being a great keepsake, a good book will never run out of power and need new batteries in order to be enjoyed!

I also worry about availability of specific texts if we go 100% digital, will the groups who want certain books banned rid the world of the supposed offensive texts once and for all if books are no longer available in print form?

Around the house... I see a dozen toys and items I need to pick up.

One of my favorite things...a sleeping child's peaceful face; Kara is napping on the sofa right now...

A few plans for the rest of the week: Laundry, tree trimming, and many items from the honey-do list that could not be done because of rain. It is time to prune some roses and trees!

Here is picture for thought I am sharing...Happy Valentine's Day

On a side note

2010-02-11T16:02:00.003-07:00

When I was undergoing cancer treatments and the subsequent surgeries to reconstruct what I lost to cancer, I was fired. They reasoned that my substitute could do a better job than I because he was not ill. Apparently a lot of people with cancer are fired; we are substandard employees because we cannot work as long or as hard as we used to.

While undergoing treatment and surgery, cancer patients are covered under the Americans with Disabilities Act ( a new addendum to the law makes what my company did harder to do). I decided I would talk to someone at the Attorney General's office about this, as I felt my workplace violated the ADA. I left numerous messages, I did not hear back. I had to request the help of a federal senator to get the ATT Generals office to answer my phone calls. I wrote a very long and impassioned letter to him and Senator Mc Cain sent a letter to and called the Attorney Generals office instructing them to call me and set up an appointment. They called that day.

During my first appointment I spoke to a civil rights lawyer who told me, yes my workplace broke a law, but that most places get away with breaking ADA laws because no one reports them or holds them accountable. It is not until they get caught doing something wrong that they actually follow the letter of the law. Being caught usually means being sued. The lawyer called in my ex co-workers and bosses and got their side of the story. After they were through, I was called back to hear a summary of what was said.

These people, some I had worked with for 17 years, LIED, they had stories about my lack of responsibility, my frequent calls in sick, and they felt justified in doing what they did "For the good of the business". "It was not personal, they were not doing a thing wrong, just protecting their investments"....what? It was personal to me! I could scarcely believe my ears. I listened to the machinations of my bosses in disbelief, sitting there in shocked silence, my mouth agape. The lawyer told me most people lie to get away with something…did I really expect them to tell the truth? I had told the complete truth, keeping careful records (I was a list maker, having to write everything down to remember it later because I was cognitively impaired by chemotherapy, a condition colloquially called chemo brain) so yes; I expected them to be truthful. Was I naïve, yes?

It was determined that I could take them to court, but the attorney cautioned me it would get ugly, and she felt that the stress would be very bad for me. I had time to decide what to do, and I did some soul searching, but my decision was made for me when the health club closed down for good months later, coincidentally just days before my claim had expired. Karma?

What struck me most in this entire ordeal was the one statement the lawyer made "These people get away with this because no one will do anything to stop them". Be it not installing a wheelchair ramp, or not allowing someone to work half days because they have cancer, not allowing someone with diabetes snack breaks. Believe me, the post chemotherapy-post surgery part of cancer recovery is not an ideal time to take on unscrupulous people. There were days that all I could manage was a shower, spending endless days sleeping while my body healed, joking that I felt like I was half dead and was slowly coming back to life. (not everyone has that level of fatigue with cancer treatment) I saw more TV those few months than I had in years.

So why am I even talking about this? Why? Because once again the ADA is being completely ignored while state governments decide to cut budgets by cutting aid and services to their citizens with disabilities. I have not forgotten the pain it caused me to be dismissed so rudely, not to mention the financial losses. It was demoralizing. I do not want that to happen to anyone else.

So what, right? Who cares, as long as taxes do not go up…(insert sarcasm) When you hear “disabled person” do you think of someone like my daughters, or your elderly neighbor who is using a wheelchair to get around? Not contributing members of society, right? Isn’t that what I hear detestable talk show hosts say about people like my daughters? Who should care about them? I DO

Many folks believe that being disabled pertains to people born with genetic disabilities, or birth injuries. However, there are millions of disabled Americans, people who were hurt in accidents, like my cousin Danny, who was made a quadriplegic by a drunk driver when he was 18. Or cancer patients who were once robust and healthy, now weakened from radiation or chemo tearing down their bodies, all done to save their lives. Maybe your wife had a stroke while on birth control pills? Or your husband or father had a heart attack at age 45 and suffered hypoxia to his brain? Maybe you are someone with severe arthritis? All disabilities and all covered under ADA.

I think it is common for a society to dismiss those who they feel are less than ourselves, I do believe that how we treat people who need the most help defines us as a society. In my heart and mind, America is currently getting a D-.

I am hearing about the wealthiest among US citizens sending billions to offshore accounts to save their money from additional taxation. The government WILL NOT take their money, they worked hard for that by golly, no way is it going to be used for anything other than that new jet, a villa in France, or to buy an island! They have within their power to help America recover from this recession, but they choose to help save themselves instead.

We have also watched the news and heard of a company (s) who gave billions to employees as bonuses. That was our money folks, ours and our children’s and our children’s children.

I admit, I am getting a headache, I sit at a desk with Gandhi's quote affixed above my head; "Be the change you wish to see in the world". I do what I can as an average citizen, I call our state and federal governments, write emails, sign petitions, and attend rallies when I can. Does it help? Maybe if 100 friends did it as well, and 100 of their friends and so on. Can I sleep at night if I do nothing? NO, I am driven to stand up for what I believe in.

I urge you to go to www.defendingourfreedom2010.blogspot.com . Read my blog post after this one, can you do anything to help stop this trend?

From ARC -Americans with Disabilities Act-budget cuts

2010-02-11T15:32:00.003-07:00

I thought this was too important not to share, please read through it, most of my readers have children with Down syndrome, we do not have to sit by and hope things change, make your voices heard, call, write, and visit the blog mentioned below, there are hundreds of thousands (maybe millions) of us, we can make a difference.

DEFENDING OUR FREEDOM: ADAPT's Call to Action for Home and Community in America. (2/2010)

We The People hold our government accountable for enforcing our rights.
As the 20th Anniversary of the signing of the Americans with Disabilities
Act draws near, the disability community is not busy celebrating because
we are literally in a fight for our lives and our most basic freedoms.

Eleven years ago, in the Olmstead decision, the Supreme Court said that
Americans with disabilities have the right to live in the most integrated
setting. Yet today, states are responding to budget shortfalls by
drastically cutting home and community-based services. These draconian
cuts are forcing seniors and people with disabilities into nursing
facilities and other institutional settings because they don't have the
services they need in the community to remain independent.

As states cut vital services, the federal government, which is charged
with protecting our civil rights and enforcing the law, is simply standing
by - silent - while Americans with disabilities have their most basic
freedoms taken away by the states.

The disability community cannot sit by as our freedom is negotiated away
in back room budget deals. We must take action!

DEFENDING OUR FREEDOM is a three-prong national campaign initiated by ADAPT to organize the disability community to:

* Demand that the Obama administration fulfill its duty to
aggressively protect the civil rights of disabled Americans and enforce
the Americans with Disabilities Act/Olmstead decision;

* File complaints with the Health and Human Services Office for Civil Rights and the U.S. Department of Justice that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced as well as complaints that document the state policies and budget cuts that violate our rights; and

* Document the disability community's efforts to fight back against state cuts so that we can learn from each other's efforts, rally others to join our fight, and hold public officials accountable when they do not support our freedom.

I. DEFENDING OUR FREEDOM: Demanding action by the Obama administration. The federal government is responsible for enforcing federal law and assuring that states comply with the Americans with Disabilities Act/Olmstead decision. ADAPT is demanding that the federal government
affirmatively and aggressively enforce the Olmstead decision. To do this,
the Health and Human Services Office for Civil Rights and the U.S.

Department of Justice, must:

1. Accept, investigate and resolve individual and systemic complaints
which document state policies and budget cuts that threaten the freedom
of Americans with disabilities;

2. Develop specific benchmarks/criteria for assessing state compliance, and holding them accountable. with the Olmstead decision, assess the states and publicly release this assessment on an annual basis;

3. Conduct regular, on-going compliance reviews of states for compliance with the Olmstead decision;

4. Develop "most integrated setting" criteria for determining when DOJ will step in and affirmatively enforce the Olmstead decision whether or not there has been a complaint filed ;

5. With CMS, review state submissions for modifying their Medicaid State Plan and HCBS waiver services for the impact that these changes will have on the state's ability to comply with the Olmstead decision so that those changes which limit the freedom of Americans with disabilities are not approved by CMS;

6. With CMS, modify Section Q of the Minimum Data Set so that people who indicate they want to return to community living are actively assisted to do so;

7. Publicly report on the progress that has been made so that these results can be discussed in a potential meeting between Georgina Verdugo, the HHS/OCR Director, and ADAPT representatives.

ACTION TO TAKE: ADAPT is urging organizations across the country to sign
on in support of these demands. If your organization would like to support this campaign, email DOF.signon@gmail.com

II. DEFENDING OUR FREEDOM: Filing complaints to protect our freedom

The Health and Human Services Office for Civil Rights and Department of
Justice are charged with protecting the civil rights of Americans with
disabilities who want to live in the most integrated setting. Although they are able to affirmatively enforce the law without specific complaints, these agencies typically take action only when complaints are filed. We need to file complaints that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced. We must also file complaints that document the state policies and budget cuts that steal the freedom to we are entitled under the Olmstead decision.

ACTION TO TAKE: ADAPT has prepared a form you can download and fax to us toll free at 1-888-324-0787. We will forward your complaint to the Health
and Human Services Office of Civil Rights, the appropriate HHS/OCR
Regional office, and the Department of Justice. If you choose to file
your complaint yourself, please notify us at DOF.complaint@gmail.com that
you have filed a complaint and, if possible, send ADAPT a copy.

III. DEFENDING OUR FREEDOM: Fighting back and sharing our stories
Even though there are different battles in individual states, we are fighting the same fight. To strengthen these efforts across the country, our campaign will collect personal and state stories about the effects of budget cuts and the efforts to fight back against them. ADAPT has created a website www.defendingourfreedom2010.blogspot.com where we can post information and pictures of your advocacy. This will create a public record of the disability community's efforts to stop cuts and hopefully inspire others across the country to speak up and speak out, too. State advocates can also submit individual calls to action so that we can support each other's efforts.

ACTION TO TAKE: Send submissions to defendingourfreedom@gmail.com . And remember to keep up on what groups are doing by reading the blog:

www.defendingourfreedom2010.blogspot.com

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at
http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects.

To contact Steve Gold directly, write to stevegoldada@cs.com
or call 215-627-7100.

Ice Skaing Special Olympics

2010-02-11T13:07:00.006-07:00

One of Meghan's favorite movies is Ice Princess, i think she would like to try ice skating, wish we lived somewhere where it was more possible. Our kids can do anything, they may not do triple toe loops, but I am so proud of this little girl here.

In the end, it is about respect-ARC advocacy PSA

2010-02-05T17:48:00.000-07:00

The Simple Woman's Daybook

2010-02-04T13:13:00.007-07:00

My friend Debra has a beautiful blog, she writes from the heart, and her posts are always thought provoking.

She was talking about trying to find subjects to ponder in her blog and she found this:

Outside my window....

I am thinking...

I am thankful for...

I am learning...

From the kitchen...

I am wearing...

I am creating...

I am going...

I am reading...

Around the house...

One of my favorite things...

A few plans for the rest of the week:

Here is picture for thought I am sharing...

Sometimes I click "new post" and just sit here not knowing what, in the hundreds of things happening daily, should I share, if anything, or I will begin a blog post and Amanda,Meghan, Kara, Julia, Tom, a cat...will need something, or I need to change diapers, or the phone rings, and my train of thought is disrupted and I find I cannot get back to the same line of thinking. I have more drafts than I have posts, truly. Once in a while I read through each draft and then delete them. Sometimes I save them in a journal I keep, knowing that some thoughts are best kept to oneself.

I am hoping that once a week at least, I can use the Simple Woman’s Daybook as a way to post something relevant about our little family and our lives.

So here goes, for today at least:

Outside my window.... I see growing clouds, the last few weeks we have been getting sorely needed rain, though it traps the girls in the house, our back yard is landscaped in mud and more mud. The rain is bringing the desert to life, this spring we will have a plethora of bright blooms to enjoy!

I am thinking...of time away, it has been on my mind a lot lately, just a few hours, half a day, something to renew my mind and spirit, I love my girls, but I need Me time.

I am thankful for... my health, my family, having a home to live in, a car that runs, and friends who listen without judging me.

I am learning...that even at age 50 I learn something new every day.

From the kitchen...it is lunchtime, Amanda is standing at my elbow reminding me that she is ready to eat. She will have her food, Kara ate cucumbers and apple slices,and chicken, corn and black bean chili, Meghan is eating just the chili, she does not like veggies like Kara does.

I am wearing...old workout pants that are too tight, a polka dot tee and pink flip flops, I am proud of myself for getting out of my pajama's today, some days I wear them all day...no need to get clothes on when I rarely leave home, except that I prefer to be dressed in my day clothes, it makes me feel more productive!

I am creating...nothing at the moment, but I planning my garden for the spring. Deciding which trees to prune, and getting ready to prune my 40 rose bushes. What I do now will create the garden I want later.

I am going...no where soon, I am hoping we can go to Brian's new play next weekend.

I am reading...The Tao of the Defiant Woman, it is a very short book, but relevant to my stage of life right now.

The five principles of the Defiant Woman show how to defy outdated stereotypes, self-defeating behaviors and limitations, while maintaining inner peace:

• Recognize that your body is changing and be thankful that it continues to work as well as it does

• Understand that your relationships are ever evolving and you’re a work in progress too

• Treasure your friends and draw strength from the community of women

• Seek positive role models and strive to be a like example for those younger than you

• Know that the world too is continuing to develop and be content because there is always something new and exciting to learn

Around the house...I spend my days juggling cooking, cleaning, enjoying hugging, kissing and feeding, changing, and teaching my three youngest. Being an ear, a shoulder and a friend for my teen, and looking forward to my husbands arrival back home each day. With no outside job to go to now; it is just me, my family, and my home.

One of my favorite things...being awake after everyone has gone to bed for some quiet time alone with Facebook and my games, it is a nerdy thing I love.

A few plans for the rest of the week: Sunday is Eric's birthday, we will be eating cake and enjoying his company

Here is picture for thought I am sharing...

Brian, our youngest son, is talking about leaving our hometown. I knew that my children would likely decide to make their homes some place else, and we knew Brian had his eyes and heart set on NYC, he is an actor, so it makes sense to him, though he is talking of going someplace else for now.

It brought to mind our 4 days at the Equine retreat at the now dissolved Sunstone. We were supposed to get a horse to do what we wanted it to do; to walk over a rope, to pick up his foot, to run in circles. We had found that we really could not exert our will over the horse in the way we envisioned, instead, the horse had to decide that he wished to do as we asked of him. He had to know that we had the inner strength, the confidence in yourself.

I am hoping that my son will remember that we cannot force the life we want, having goals and dreams is important, but we need to be ready for each new stage and I am praying he is ready for this one. I am not certain that I am...to have him so far away with a limited income, it feels like we will never see him. That makes my heart thud, because he will be too far away to rush to his side if he needs us. (he has been on his own since he graduated) Letting go is the hardest lesson a mother has to learn.