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CMV, autism, asperger.....need advice and help!!!

post #1 of 4
Thread Starter 
Hello, I have a 10 year old daughter born ++CMV. Born with only NO gag, suck or swallow. Tube fed till 4, sat up on her own at 19 months and walked after 2 years but never crawled. She was 2 months premature, numerous surgeries as well as special education and speech therapy. She walks and talks now after doctors stated she may never be able to. At first sight, some have told me MD, but no diagnosis. 2nd psychological exam is now reporting possible asperger, autism ADHD, but all secondary to CMV. Her school has dismissed her from an IEP and speech because she reads to well. She is in the fourth grade with 2nd grade level math, limited knowledge in reading and has memorized the answers for testing of an IEE. She can tell you what time her favorite shows come on and what channel they are on. I keep her updated with audiologists, and specialists for CMV, she does have tubes to release water behind the ear but have confirmed NO DAMAGE TO HER HEARING DUE TO CMV! No doctor will sign anything concrete to help me with the school system. Here is my problem, she does whisper answers back to her self after answering out loud. She is loud at times and speaks in a mono tone voice. One minute she wants to be alone then about face she wants friends and is lonely because kids tease her and make fun of her! She is unaware of any of this and have explained real life but lives in an unrealistic world. She shows no fear in crossing a street without looking both ways and is developmentally delayed. Her school will not help me. I'm having to wait for private insurance to kick in just to get her back in with a SP, even though the school offers this for kids with her needs. Psychologists have stated that medicating her for ADHD will not help and could lead to severe depression if she ever wakes up to the real world. She has no friends but will tell you she does, you can ask her a simple question but you can't get an answer. She sways back n forth while playing and often will not make eye contact unless you enforce her to do so. When in large groups of gatherings such as family get togethers or special occasions she will find a single child 2-4 years her younger to socialize with. She won't with kids her own age. She can't tell you why she whispers to her self but will tell you she would rather be somebody else because she has no control over her life! I'm so confused an feel trapped in a corner by our system. Has anybody ever heard, had experience or come across another child like my daughter? If so? What else can I do besides fighting a system that wants to sweep her under a carpet and ignore her problems and my pleas for help. She does show signs of asperger, autism, ADHD, but again not enough to place her in any group for help! HELP PLEASE greensad.gif
post #2 of 4
Thread Starter 
Her swallowing has regressed in the past 2 years since they removed her from her IEP and speech at school an is now choking on food because she has twenty minutes to eat before being rushed off to class. I refused to sign her release from her IEP and the school is now punishing us because I went to the disability law center to try and get a child advocate for her. I have had another case swallow study done and though she struggles she is NOT aspirating. What more do I do to wake up the system and get her help!
post #3 of 4
Thread Starter 
Her swallowing has regressed in the past 2 years since they removed her from her IEP and speech at school an is now choking on food because she has twenty minutes to eat before being rushed off to class. I refused to sign her release from her IEP and the school is now punishing us because I went to the disability law center to try and get a child advocate for her. I have had another case swallow study done and though she struggles she is NOT aspirating. What more do I do to wake up the system and get her help!
post #4 of 4

Bumping this thread up.  I have no advice since we did not have to fight this hard for our services.  One thought: can you get a 504 at least for the swallowing/ choking issue?  Obviously it sounds like you need the IEP, but at least a 504 is a legal document requiring the school to make SOME accommodations for your kid.

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