Thursday, February 5, 2009

Another Bump In This Long Winding Autistic Road

We've been struggling for a month now since Brian's one-on-one left us. Applicants after applicants were turned away and about two weeks ago we were given *A*, kind of the "VP" of the company we go through, just as a stand-in until we find someone permanent. I was very excited about this- someone to help everyday and to help us just get back into some kind of schedule- I knew the routine would help Brian so much as he has been having such a hard time.

When I told a few other colleagues of mine that *A* would be working with Brian they all grimaced a little and said, "She's really controlling". I watched her the first day at Brian's preschool and I, honestly, felt she was not controlling enough- she was letting Brian wander at the end of lunch instead of telling him he needed to sit or clean up. Over the next few days I watched them at home in the afternoons and she seemed fine. I was happy that Brian was happier about going to school, now that I wasn't driving him there- the transition was so much harder for him when it was me dropping him off. I was feeling good about the situation despite other people's impressions of *A*.

Today, as I was deeply engrossed in Breaking Dawn while Corbin was having a speech session, Brian's OT popped out and asked me if I had a minute to talk to her. I knew something was up right away as we are totally informal with eachother and her demeanor was off- her and Corbin's ST are like family to us. I went into her office with her and she actually had tears in her eyes as she told me that she visited Brian's preschool room today and she was not happy with what she saw. She said that she watched *A* manhandle him all day, holding his head forcing him to look this way and that way, she was giving him absolutely NO physical space, she was being way too strict with him and just on him all the time. She watched them at the writing center where *A* had him actually write the number "3" fifteen times while his friend, Emma, was right there trying to communicate with him but instead *A* just kept moving his head back to the work and always stepping in fixing his grasp. She watched her over and over just ignore social opportunities to instead "fix" whatever he was doing wrong. And of course because he's being rode so hard she witnessed him tantrum after tantrum while there. Of course by the end of this talk, I was in tears too. *A* has had me believing that preschool has being going GREAT and that he is just having a grand time there. Our OT is writing a formal complaint and said she was having a hard time staying on Brian's team when such things are happening as she feels all of her hard work with him is completely destroyed as they are only giving him more and more anxiety. Of course, she won't leave us, but she isn't going to stand it without a fight.

Brian's OT and I have always been on the same level. She is on the GF/CF diet herself. We both believe that Brian is smart beyond what anyone thinks. We both believe in whole body wellness. We both believe that preschool needs to be a time to be pushing his SOCIAL/EMOTIONAL skills- he has another 18 hours a week just at home that can be used for his cognitive skills which really, I know are important, but if he's under stress and checking out he isn't going to learn those skills. Brian knows his letters, shapes, colors, numbers all receptively and some expressively- he can put numbers in order, he can make patterns, he can write his name, he can color inside the lines, he can cut across a full sheet of paper in a straight line, he can follow complex directions, he is learning prepositions but he can't interact with his peers, he can't figure out how to include them in his play, he can't regulate how excited he gets when a friend comes over to play, he can't talk to his peers. Then I think of this woman constantly "fixing" him, constantly nitpicking, physically moving his head around, in front of his peers and wonder how much harder that makes it for him to connect with them.

I am so over with all of this- options are so limited around here for programs for him- the best program for him, and I know it from the depths of my heart, is MY school but he can't go there because our connection is so strong that he can not fully interact with others when I'm near- he's my "velcro baby", as I call him, constantly needing to be in close proximity to me (he's sitting on my lap as I'm typing this). I'm sooooo close to leaving my job, looking for another, so he can have this chance to go to a program that is based around the Floortime model. I don't dare do so, without something else lined up of course, because then where would we be without my income? I've said this again and again- but I just want a manual that tells me exactly the right choices to make for Brian to make him reach his full potential, to do what is best for him.

1 comment:

Christina said...

(((Heather and Brian))) That just broke my heart to read, so I can only imagine how you felt hearing all of that. That is just awful - she should not even have a job!!!!