Down.....But not out! The battle continues....

We received a letter a week and a half ago turning down TSS services for Gianna. Guess who was on the phone filing a grievance the second I opened up the letter ?????????? That's right, yours truly. As I read the reasons I chuckled to myself. The first was that the psychologist that tested our daughter did not turn in all the necessary paperwork and tests. Second, they said that a BSC(Behavior Specialist Consultant) has to observe Gianna in school and complete an FBA and implement a behavior plan that is appropriate for "a child diagnosed with Pervasive Developmental Disorder" WHAT!?! I have never heard that diagnosis for Gianna before. They just pulled that one out of a hat. So I get a copy of the psychological evaluation that was completed in July and it was a complete mess full of misspellings and bad grammar. I look where it says child's strengths and guess what it says??? "Her cute, elfin-like facial quality"?!? Ok, so yeah, Gianna has the typical WS facial features and yes, we think she is cute but in terms of strengths on a psychological exam that is ridiculous. What about her endearing personality, willingness to please, eagerness to learn,strong language skills.... So I enlisted the help of Dr. Kaplan at the WS Clinic at CHOP who immediately faxed a letter in support of Gianna receiving a TSS and also explaining about WS and some of the deficits that individuals with WS have. Within two days we received a phone call requesting a re-evaluation by a different psychologist. So last Tuesday we took Gianna down town to be tested once again. We should be hearing within the next few weeks if she will be given a TSS. Meanwhile, she kind of just does her own thing at school. Her teacher has expressed concerns about her distractability and that she does not focus for very long(no shit). She has also lost weight as she is having difficulty feeding herself at breakfast and lunch(provided by the school). The aide cannot sit with just her as there are 19 other children in the room. So more food ends up on her and the floor than in her mouth. I just picture my poor little baby sitting there trying to feed herself. It breaks my heart.Plus she has been wetting herself frequently. Last week my husband picked her up and she was soaked. He took her home to change her and she was all irritated and red from being wet for so long. Her teacher is absolutely wonderful so I do not fault her. She has her hands full with the other kids. One part of me wishes she were back at SPIN where there were 8 kids and 3 adults but even her former teacher said she needed to be with typical peers and was ready to move on. We are not saying that this is the perfect environment for Gianna but we want her at least to have the chance. With a TSS we think she will be able to do it. Please send some good vibes our way..... I'll keep you posted.