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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

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Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

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.

5 comments:

GoldenAngelsWorks said...

I hate hearing that professionals can be so unprofessional. I have seen quite a few of those myself.

No one knows our kids better then we do. Nor can someone love them as deeply as we do.

I love you and your girls and meeting all of you just made that more real.

(((HUGS to a wonderful mother and angelsister)))

Sheila said...

Give 'em hell, Kris. They deserve it! It is appalling how quickly some people with one specialty think they are experts in all areas.

Becca said...

Wow, I can't believe they said all those things to you! Well, I *can* believe it. Ugh. Is there a supervisor you could send a letter to?

Yeah, and I would totally hate someone having the nerve to *commend* me for parenting my children, like I had just helped an old lady across the street then gone on my merry way. How ignorant. Sounds like there are some training issues in that office...

Sharon J said...

I can resonate with so much of what you wrote there. I too have had my fill of "professional" who tell me they know better than I do how Paul (my son with special needs) behaves etc. I'm about to start on a new journey now, trying to find out whether Paul has Cri-du-Chat syndrome, so no doubt I'll be met with another round of professionals who know so much more about Paul than I do, even though I've been his mother for 33 years!

Always remember that YOU are the one who knows your children better than anybody else so please don't let these small-minded people belittle you. There's only so much any of us can do and it seems to me you're doing an awful lot more than many would x

KonaGold said...

Kris, that is horrible! (HUGS) I know just how you feel. Sadly, it seems as parents of special needs children we get treated like that frequently. I don't know how many people tell me that my boys don't look autistic. I'm sorry you had to go through that. I'm glad to hear that Amanda has made progress. All of your girls are so beautiful, I just love hearing about them. I hope you are all doing well. I'm glad that Meghan's kitty came home. I said a prayer for him and for you. You are a wonderful mother and person, I don't think anyone could ask for more. The thing with these professionals is they only see the kids once or twice, or maybe only an hour or two a year. They aren't with the same child 24/7 and they only see the child in their environment, not the child's environment. They don't GET what Amanda's life is like for Amanda or for you. They don't know if it is wonderful or bad or hard or easy. It's hard to keep that in mind, because a lot of times they do make mothers feel inadequate- like if only you did this, the child could be helped- makes me want to say some very un-Christian things. ;) For what it is worth, I have always admired you as a mother.

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