I am about to express my annoyance over new therapists. Please note thought at these therapists are lovely, dedicated, well-trained and well-intentioned women. I am just generally pissed off.
We are incorporating some new therpaists into Sam's home program. Why? Because I am Master of the IEP (yes, I have given myself an official title)Sam will get 8 hours a week of home therapy continous throughout the year (no breaks in the summer). This is in addition to his school and extended school year program. Will it make any difference? I hope so but I doubt it.
How did I get this many hours? I carefully wrote letters detailing the specific actions Sam engages in that create danger for himself and others. I also pointed out, in writing, that I was keeping anecdotal records of his behavior and making video tapes of Sam in our home. I also mentioned that I was considering private placements for Sam for which I expected the district to pony-up (considering all the documentation I have of his lack of skills developments and so on. . appropriate education environment. . )
The frustrating part about adding new people is that each person askes the same questions about Sam's behaviors. (what is you give him something appropriate to throw? so you make him clean up? have you tired an activity schedule? and on and on). Yes yes and #$@^#*& yes. We have been working at this home program for nearly three years with trained professionals and YES we have tried it. It doesn't work. Nothing works. He is stimming 90% of the time. He will not substitute something appropriate because part of the appeal is the loud thud and the way things break when they hit the floor. Making him "pick up" did not work in the classroom so why do they all think it will help at home? We make him do it because children should clean up after themselves but it has no effect on whether he will cover the floor with books a minute later. He will only follow an activity schedule if someone stands over him and enforces it. even then his limit is about 2 activities. He is capable of doing a puzzle or stringing beads but those activities hold no value for him so he will not do them unless forced. We do them anyway but after three years and no change in his interest or ability it seems like a waste.
So, while I am very happy to have these extra hours because maybe, just maybe they might help and they give me psychological and physical break (and those of you who know me know I am getting ready to add the psych hospital to my speed dial - for me or for Sam - who cares?), I am not convinced they will do much. The only suggestions a whole team including behaviorists, teachers and aides has given me are to make him clean up every 10-15 minutes and put him in his room (which is almost a "safe room" at this point since I had to remove almost everything from it). I made them promise out loud that they wouldn't call child services on me for shutting him in his room.
A number of people have asked why I don't just take the books away. After losing quite a few books I DID remove some books and box them up. I don't have anywhere to store those boxes right now so they are in the living room looking lovely. I also have another set of shelves in another room he hasn't gone after yet (although he is checking them out from time to time)and I moved some item there. The problem is, if I take the books away he will move on to the next thing. He is throwing the books because I took away the last thing he obsessively threw (blocks). Giving the blocks back, unfortunately did not reverse the habit. I know what he is considering for his next obsession: the picture frames. I could remove those too but then what? This is a compulsion that can't be blocked with the basic behavioral tools and I can't turn the house into a psych hospital. The girls deserve to be able to play. The big problem is that Sam has no other interests and no amount of ABA has been able to develop one in him.
The additional therapists are wonderful as I said before but I am already seeing looks of "holy crap" on their faces. They have reported back to their supervisor that Sam is one of the toughest cases they have seen. And while the validation that I am not crazy or doing something amazingly wrong is nice, it doesn't make me think that thing will improve any time soon.
On the plus side, due to generous support from family members who are hoping to keep me out of the psych hospital, Sam is probably going to day camp for two weeks in August.