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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

Wednesday, February 15, 2012

The Dual Diagnosis of Down syndrome and Autism

Let me be completely honest, I hate autism this week, I know hate is a strong word, but what it does to our Amanda is heartbreaking and frustrating, and I am so tired.

Is it only Wednesday?

When Amanda came home it was like she was waking up from a bad dream. She was obviously neglected, a mouthful of cavities with yellowed teeth and gingivitis showed a toothbrush never passed her lips, she was 17 pounds skinny at age 3, she was 29 inches tall, she came home in 12-18 month clothing, 18-24 fell off of her. I know her orphanage did what they were taught, but they obviously did very little beyond feeding her and changing her diaper.

(I fervently wish someone would go to those orphanages and hold those children, show them love and give them one on one attention, because the lack steals so much from them.)

She had fetid breath.

She smelled awful, bad enough that most doctors who cared for her in those early months gagged if she breathed on them, the optometrists assistant nearly vomited when she did, poor woman was so embarrassed.

Amanda is a beautiful little girl, she has an endearing personality when her autism takes a back door to her sweet side, but her autism gave her a very prickly personality, she preferred being alone, likely why she was neglected as severely in her orphanage, she did not demand attention at all. When we got her home, numerous times a day she would scoot on her bottom to her bed, and would wail to be put back into it. She hated to be touched, held, could not make eye contact at all, if you tried to hold her, she would make her hands into claws and scratch you in terrified fury and confusion, she had no idea how to accept comfort.

Amanda also had no idea how to play with a toy, she would push it back and forth on the floor, wiggle it and watch it in her peripheral vision, or throw it.

She had an entire litany of repetitive behaviors that she self-comforted with, teeth grinding, audible through her teeth breathing, head dropping, repeat, rocking, even masturbation, yep.

She has mixed sensory issues, she loved massage, brushing, vibrating toys she could hold, she loved to be held, back to stomach, but face to face was hit and miss. We worked a long time to get her happy in a persons arms. She would sit with them, make eye contact, flirt, smile, everyone was so happy with her progress. Then she begin to backslide...There are days she will fall into a hug with her faced pressed against us and melt with happiness, others she grabs our clothes, hair, faces, and pinches, scratches, or pulls HARD. We never know from one day to the next how she will react. Often she does both, and usually with a manic look on her face.

We had no idea she had issues when we adopted her, but we learned very quickly, we were certain Amanda had autism that first month home, but we waited the requisite year before we had her tested. Everyone seemed to think it was institutional, but as I have learned in my reading, many adopted children with these severe behaviors do indeed have TRUE autism, the lack of love and attention they get in the orphanage only makes the behaviors worse.

Amanda's development was so delayed, she did things a very young baby would do, although she could sit, stand, locomote (in her own very original way) she had zero self-care skills. We fed her all her meals for 3 years. Miraculously and after a lot of very hard work, Amanda finally allowed a spoon to stay in her hand, and she began to feed herself. It was a tremendous milestone for her, but I think she misses that one on one attention too. You can see her sometimes watching me feed my Grandson with a wistful look on her face, and she asks to be held while I am feeding him. Actually it is pretty typical behavior when the youngest loses that status to another child, even if he does not live with you. She will have to deal, it is life, ya know? I have been through this 7 times with my kids, all the other youngest children survived, Amanda will too.

She got better and better about every single autism related issue she had. And then the switch got tripped...her development has progressed from infancy to what most mothers would call "terrible twos". With Meghan, terrible twos lasted 3-4 years, those annoying things two year old's do to their moms as they learn about their world, (to be honest it is really two years with typical kids, we called it terrible-twos and tyrannical threes). Kara finally stopped throwing everything a few months ago, though she still does it occasionally, that throwing can test a parents patience...especially if it is a remote, cell phone, camera. sigh

It is just so hard, a child with Down syndrome going through this stage is a challenge, it is really a lack of judgement that makes it dangerous for all kids. Autism has added something else to this, it is a Tasmanian Devil, or Godzilla persona, pure destruction, throwing everything, pulling hair and terrorizing the dog, cats, Kara, sometimes Meghan. Smash O crash. Grrr argh monster, stomp stomp BOOM! Yesterday Amanda was taken to her room, on the way she knocked over every single thing she came into contact with and she was screaming the whole way there. My son and his wife came for a visit, and they had Mathias with them, she was all over them like a Piranha in South American waters. She got to be in time out three times. It was really for every ones protection, including hers. I wanted to cry.

If you come over for a visit, watch out. Amanda will get behind you and try to kick you off the couch. If she sits with you, you may be pinched or scratched. She will pull your hair in the middle of a hug. She knows better, and all those years of "gentle touch" "kind hands" well, gone, she either cannot remember, or just cannot help herself.

Their special ed teacher J called me two weeks ago and I told her HELP, Amanda is acting up so much, we talked and she said "It is fantastic though, her development is progressing" and she giggled, good thing she was on the phone, cuz her hair may have been pulled, and not by Amanda. I sighed and laughed with her, she was right, it is a great thing, Amanda's emotional development was stuck in infancy for so many years, moving to toddler hood is a milestone. *sob*

She is very jealous of her new nephew...who her mommy loves so much, and HER mommy holds and feeds him, and he gets the attention she wants to have ALL THE TIME these days. I cuddle her, all too often while keeping her hands away from my hair and gently telling her "nice touch, soft touch, NOT A m-e-a-n touch" (Yes I admit to using silly voices when I do this, it gets her attention)

Except I am exhausted from stopping her, I look at her and ask her, "Little girl, you know you are hurting people, and it makes them not want to be near you, right?" She looks at me and asks for a short hug, she knows, she does. So we begin all over again to teach her how to channel those icky, wiggly, cannot-stand-to-be-in-my-own-skin-feelings.

Autism, I hate it, I feel like it robs Amanda of the joy she would otherwise have, it seems to take control of her and makes her do things she knows not to do, and the struggle is there on her little face, the confusion, so she screams and yells and throws things in frustration. She has to work through this stage, no magic pill with make it go away; just love, lots of work, PATIENCE, and TIME.

Can I tell you how much I want to cry at the end of each long day? I am exhausted, but I am a mom and this is what we do, we work with our kids NOW so they can have a better future.

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