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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Friday, November 11, 2011

Saying goodbye too many times

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.




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.




Wednesday, October 12, 2011

31 for 21, See my child, not her syndrome

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

Monday, October 10, 2011

Not again, in memory of a sister survvior

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/

Sunday, October 9, 2011

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

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.

Sunday, October 2, 2011

B is also for Buddy Walk

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.

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.


Saturday, October 1, 2011

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

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.

Tuesday, August 30, 2011

In memory of Kim

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.


Monday, August 1, 2011

End of summer update

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!!

Wednesday, May 4, 2011

Pictures

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

Sunday, April 17, 2011

I Beg your Pardon?

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.

Saturday, March 19, 2011

Tuesday, March 1, 2011

Spread the Word to End the Word


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

Wednesday, January 5, 2011

Wonderful interview with Temple Grandin



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.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video

WDSD