Dani

[Guest guest]

I am a new member and have spent the last several days reading up on previous

postings. It is comforting to know that I am among other who can truely

understand our issues. Our daughter Dani, 12 years old, was diagnosed

prenatally with DS. Thus, we were able to familiarize ourselves with what it

would be like to raise a child with DS. We arranged for her to receive early

intervtion therapy at about 6 weeks of age b/c we notified our local MR/DD as

soon as it was confirmed that she had DS. She moved to a group-based

intervention program at the Nisonger center (Ohio State) when she was 15 months

old through kindergarten. It was during this time that we became suspicious

that there was something else besides DS present b/c she was not progressing as

the other children with DS and she had several " odd " behaviors. We began to

unravel the mystery when one of the OT's from Nisonger recommended a " sensory

diet " for Dani. After researching this topic, we realized that the " other "

issue might be autism. We discovered Joan Medlin's article in Disability

Solutions and became more convinced that this was it. We shared Joan's article

with Dani's doctors, but they were not ready to accept that a child could have

the dual dx and did not wish to burden us with another label. Unfortunately, we

had no other options to consider and regret that we may have missed an important

window of opportunity for early intervention for the autism.

Dani spent grades 1-3 in a multi-handicapped classroom in our local public

school district. She qualified for all the therapies (OT,PT, SLP, and APE).

Although she made some progress on her IEP goals, behaviors were always an

issue. We were not able to get additional support for the autism-like behaviors

b/c she did not have a dx for autism. She has since moved to another elementary

school, within the same district, when she entered grade four. She is currently

in 6th grade. About three years ago, we took her to Cincinnati Children's

hospital where she was dx'd with DS/ASD-PDD. This allowed her to receive

additional SLP and a behavior plan. However, the behaviors are still preventing

her progress on her IEP.

We will be developing her next IEP in about a month and we are re-considering

whether we should keep her in the public school or send her to an ABA-based

school that is in our community. I would like to hear from anyone who has

experience in both types of settings.

Dorothy,

Mom to Dani, 12 (DS/ASD-PDD) and Matt, 15.