Just got back from another ARD meeting at school with everyone. They wanted to update and reveiw goals. I hate these meetings. I really hate them. Everyone tries to be sweet and act like they care when I know that Andrew is just another number in spec ed to them. I thought I could handle this ARD alone today and I got a little ticked off and vented frustrations out on the whole group. The teacher who I wasn't sure about a first is actually doing well and trying very hard to help him in everyway possible. I am so glad I have the rapor with her and that she was there. The augmentative communication specialist says that Andrew's eye gaze is poor and that he is not ready for any type of high tech device and that he doesn't always show his communicative intent. I told her I disagree and that the activity that she had done with him must not be very motivating. I told her that we borrowed an M3 from Dynavox but that sadly we weren't able to program it enough to work with. She said he is not ready for that. I told her my main concerns in terms of school are for Andrew to have a voice and asked about what equipment we could get for him to communicate. She said a big mac switch is what they are using. Duh? We have one at home and he has mastered that, can we challenge him? With Rett Syndrome always assume competence! Come on! I got flustered and told her that he could have a tantrum and need to use the restroom but has no way to communicate that and as a Speech Pathologist that really upsets me. I started to cry but controlled it thank God. How embarassing that would have been. Then they argued over using an adpated fork. My main concern with that is that now he can barely use his hands to pick up a piece of food. More frustration. The goals just seem to be a repeat of what we have done with him for more than a year. That has to be so boring for him and I hate it! The SLP tried to add a goal about Picture Exchange Communication System. I informed the team that we tried that in early intervention for more than 6 months but was unsuccessful due to hand grasp and that we had discussed this at the first ARD meeting. Then she tried to say they would use blocks or pegs with pictures on it to for the exchange with communication. Tried that too and it didn't work. When will they start to think outside the box? I am drained. Please pray for Andrew and for me as I feel like school is a total waste other than socialization.
We are a family of five living in San Antonio, TX. Our son Andrew was diagnosed at 20 months with Autism. We knew that something was still not right about his diagnosis. After many doctors appointments with specialists and geneticists he received a diagnosis of Rett Sydnrome in November 2008. He continues to struggle daily with communication, swallowing, using his hands and with breathing. We really feel blessed with every day we are given and we are learning to love and live with life's many challenges.