I was glad I followed my gut and had her evaluated again (twice!)  She saw a pediatric neurologist and she also had videos of her presented before the Medical Advisory Board of Easter Seals.  After only the OT portion, the Developmental pediatrician said, "You do realize that this child has a secondary diagnosis of Autism, right?"  And this happened without telling them anything about our suspicions and the subsequent diagnosis.  Now I can stop comparing her with other kids with DS (apples and oranges,) and I can be assured that I did all I could with the tools that I was given.  Now I will know how to proceed from here.  Phew!

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