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.

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.

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!!

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

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.

A must watch -Down syndrome Awareness

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