Introduction to Chase & I

iVillage Member
Registered: 11-24-2007
Introduction to Chase & I
3
Sun, 11-25-2007 - 9:36am

I've responded to a few posts - so I decided to introduce myself and my son. Our 9 year old (3rd of 4 children) is falling through the cracks everywhere and we're getting more frustrated by the day. I'm an Occupational Therapist and have always known (since birth) that he was a little different. Chase didn't like to be held and cuddled, he was much happier swaddled tightly and left alone, or put in his baby swing. He'd swing for hours and hours - clear up to 2 1/2 when he couldn't get hisself into the swing anymore. At that point, my husband and my Dad installed a Fisher Price baby swing in our hallway from the ceiling and he used that. To this day - he'll swing outside for hours. Through his early childhood he also had many ear infections and 3 sets of tubes before his 4th birthday. We always attributed his clumsiness to that balance deficits caused by the ear infections.

Then, at 4 1/2 he got very sick. After 11 days of doctor's being clueless we finally had a diagnosis and he was rushed to the PICU for treatment for Kawasaki Disease. It was a long recovery, but seems to have no cardiac implications. However - since then - the autism/aspbergers tendencies as well as other health issues seemed to get much worse.

Chase has had issues with ADHD (which I am not a big believer of) that we've dealt with from pre-school on up. He also lost over 10 pounds with the KD and has never been able to gain weight since then (at 9 yrs 4 months old he's 43 pounds). He gets diarrhea very easily, is always hungry/thirsty, has little to no eye contact with others, freezes up socially, is teased in school, is a hand flapper to this day, picks the skin off his thumbs when he's nervous, and to others is just an awkward kid. He also has joint hypermobiliy and dislocates very easily. The kicker - academically - he does great as long as someone can keep him organized.

He's in the 4th grade now and is just not like other kids in his class. His teacher even recognizes that - but unfortunately - because the neuro psych couldn't pinpoint one specific problem and labeled him "Mixed Developmental Delay" he doesn't qualify for any help socially or organizationally with an IEP or 504 plan. My husband and I spend hours with him every night going through his stuff trying to get him to remember what needs done, when tests are, etc. He often cries when he can't remember or get things right. Last week he ran to his room crying "I'm a terrible person, I'm not a good boy." and it broke my heart.

So - here I am. Searching for answers and ways to help him through all this as well as a way to get the schools to act and help!!!

If you've read this far - Thank you!

Missy

iVillage Member
Registered: 03-26-2003
Sun, 11-25-2007 - 10:12am


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iVillage Member
Registered: 06-25-2003
Sun, 11-25-2007 - 10:50am

Hello Missy and welcome to the board.


Well, to me it makes sense that Chase's Autie/Aspie issues got worse after KD because Autism is generally believed to be caused if one has genetic tendancies followed by an environmental "insult". I don't know if KD would technically qualify as an environment insult, but it was a pretty big insult on his little body, and he obviously is still feeling the aftereffects.


I had some thoughts on the medical stuff first: Has Chase seen an GI specialist for his digestion issues and failure to gain weight?

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
Sun, 11-25-2007 - 12:37pm

Paula already touched on a lot of thoughts I had but I always have more I can type when I am stalling on my homework.

On the digestive thing definitely check out Katherine's page. Also check out the Healthwise section of APOV (http://asdrendrewolf.org/apovonautism/hw.php).

My 9yo (not ASD but digestive issues) had loads of problems and was never the same after being hospitalized with rotovirus. We found that digestive enzymes and probiotics helped loads. You may want to look into those as well. My ASD son did really well with these supplements in addition to a low glycemic/natural diet. his behaviors and focus were much better.

I agree on the ADHD thing. I have a 7yo who fits the criteria to a T. He can't take ADHD meds because it causes seizures for him. But I know his ADHD stuff is caused by a poorly regulated sensory system. Same for my 2 ASD kids. They have both had comorbid ADD or ADHD dx'es in the past but neither truly has that. It is a combination of sensory issues, auditory processing problems and poor executive function.

Which leads me to my next thought. The organizational issues. It is VERY VERY common for kids with ASD to have executive dysfunction. This is the part of the brain that regulates our ability to organize and utilize information. It can be extraordinarily debilitating for our kids. My oldest AS gal is very bright and it is this one thing that keeps her from getting good grades and frustrates her in school. So severely that she needs an aide, etc.

Check out this link for that. http://www.tourettesyndrome.net/ef.htm

Renee

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