Child Study Team Meeting and Parent Teacher Conference

Last week was a long week for us. Early in the week we met with Robbie's pre-school teacher. (She is wonderful and does the best she can given her class size and the amount of special needs children.) We were told that Robbie is just beginning parallel play. He has finally begun to sit for story time. He likes music. She doesn't feel like she is doing anything for him in this environment. Although we knew what she was telling us- it was still hard to hear. Robbie is so far behind and the preschool classroom is not meeting his needs. We had already sent an email to our case manager regarding our concerns about this year and our wishes to be placed out of district if they can not provide what he needs. Now we felt more prepared for our meeting with the child study team and the battle we knew we'd have.
The day before the meeting we gathered all our doctors notes and studies regarding the benefits of ABA therapy ( Applied Behavior Analysis). I looked at notes we'd taken from last year and was slightly panic stricken. The words and phrases Robbie had mastered last summer were either gone, replaced with similar ones or no progress had been made. While he has made some strides- all his reports state very slow progress- some regression.
As we entered the room to meet with the child study team- case manager, 2 pre-school teachers, speech therapist, occupational therapist and school psychologist- the room was very quite. The reality is these people had tried their best with the little amount of time they were allotted to give to Robbie and they all knew it wasn't working. It was not enough. It has been a constant battle to increase the amount of services even though we have doctors notes stating he needs 20 to 40 hours of ABA a week. He has been getting 6. The head of the child study team entered the room a few minutes later after we had begun to discuss our fears about the lack of progress. The tone of the room changed. It became so apparent that this individual is the problem in the child study team. She doesn't think ABA is effective. She moved the ABA program out of a separate room and placed it in the back of the classroom with a partition separating the ABA programs from the rest of the class (17 children- 9 of whom have special needs))After a long discussion about "creating a program" for Robbie , Rob and I were ready to object. Why recreate the wheel? There are programs designed for Autistic children. Why not find a program that has demonstrated success as opposed to throwing something together? After some debate it was agreed that he needs a program out of district- so now the search begins.
For the summer Rob stated the obvious to the head of the child study team- who we have been battling with all year. What you tried did not work. Now it's our turn to help our son. She gave in to our demands for summer school. 2 hours of individual ABA a day, 1/2 hour of speech and OT individually and 1/2 hour working together. finally the last 1/2 hour whatever his preschool teacher feels will be best. Music, Art, story time, snack- we're open. We're going to supplement at home with an additional few hours of ABA and speech.
As I look back at the past year I realize I really thought Robbie would "get better" or be "pulled through". I don't think I had a good grasp at how much he needs. During his first week of preschool last spring one of the aids asked if he used a weighted blanket. Rob and I discussed it that evening and felt he didn't need something like that. His problems weren't that severe. The boy in the class using the blanket also had a ball of play dough in his hand and an aid covering his ears. I thought- wow- thank god my son isn't that severe. (This year that same boy is in kindergarten and doing really well. He has a PDD pervasive developmental disorder diagnosis which is not as far on the spectrum as Autism.) A year later a weighted blanket was suggested by my sister in law- an OT. We have been using it for a few days and I can't believe the difference. He immediately calms down. I remember another mother telling me it will take a year to fully accept the diagnosis and the reality of it. I think she's right.