Tami - posted on 05/17/2012 ( 2 moms have responded )
My 6 yo has a rare genetic disorder that has no name and little medical literate. She also has Bilateral Sequencing Disorder, Sensory Integration, Encoprecis (still in a pull-up, won't have BM's in potty but will pee-pee in potty) she is under and IEP at school and is in OT, PT, speech at school and privately once a week, and modified pull out classes for help in area's of struggle with math/reading, etc. All that being said, she doesn't have a mental delay, and has a normal I.Q. Her genetic disorder isn't a deletion, but "extra information" on her 22nd chromosome. She is in a regular classroom but like I said, does receive the help I stated above.
We've applied for disability for her (got word today they reached a decision, but have to wait for the letter) and just wondering if anyone out there with a child who has a genetic disorder or any of the above named diagnosis has successfully gotten SSI. Our other younger son, has the same diagnosis (didn't know he had the genetic diagnosis until 1 month ago) and he's been on SSI for 3 yrs. now. He was approved with less. But you never know. We'd sure be relieved financially to know that she could secure services.