Sam's school made lots of promises back in early November. The most important were that they said they would help me negotiate respite care with DDD and they said they had "connections" and could send over a cheap carpenter to help me modify the home to create a couple of "safe spaces" for Sam when he is having a tantrum or being too destructive.
SOme posts I started but never got to finish explained the reasons why we need safe spaces - the short of it is Sam has had a few episodes in which he has hurt the girls and damaged the house. Much of it was due to a medication reaction (he is off the med) but some of it was just Sam realizing his own size and power. Once you know you can't unknow. . .
None of the promises came true. I suspect no one followed up with DDD but that is not my primary concern. I am wary of random respite care. I called various people and (politely) reminded them that because of their lack of action the girls and I were about to spend a week with Sam with no way to manage him if he gets worked up (other than perhaps to sit on him but i think he might be able to fight he way put from under me if I tried - I tried, by the way).
I believe my case manager must have been a little annoyed at the school because she also thought they would get this done. She got permission for our home program teachers to come over break ( I am surethey are thrilled but truthfully I don't care. After they do their time they get to go home to their typical families and not listen to the constant clatter of objects hitting the floor). The school also gave us 5 hours through their budget (Sam is basically in an out-of-district placement). I got some hours through health insurance and so while it is not perfect, I have put together a decent program for him. I hope I can do as well in the summer.
Last year we realized that we were no longer going to be able to travel for Christmas or Hanukah. Family members kindly say "we don't mind" and " we will help keep an eye on him" . but when their books get ripped and their stuff hits the floor, they mind. To truly keep an eye on Sam you must stay 2 steps behind him every waking minute and be ready to physically move him if he gets out of control.
So for some reason we decided to travel on xmas day. My sister lives just over 2 hrs away and next summer she and her family are moving to California ( my sadness on that one is a post in itself). The drive there was smooth. The visit was terrible. Mark and I took shifts following him trying to prevent disaster but neither one of us really relaxed or got to enjoy the people we were there to see. Mark and I were unhappy but most of all we realized how unfair it was to Sam. There was nothing he could do. In our house we may hate the dropping but when we can limit it to blocks and toys we live with it because there is no choice. Our floors are damaged and we wish we had good earplugs sometimes but it is what it is. In someone else's home Sam is over stimulated and he is basically not allowed to do anything because nothing he does is appropriate.
The ride back was scary. Early on we hit MAJOR traffic. We were at a near standstill for almost an hour and Sam FLIPPED out. He screamed at the top of his lungs, threw anything he could gets his hands on, kicked the front seat with all his strength, tried to escape his seatbelt, and tried to hurt Maya. Mark had a hunch the traffic was due to an accident so he got off at an exit that took us east and we took a chace that it would eventually hit a route that went north. After about 25 minute it did and we were ok. Sam loves car rides as long as we are moving.
So no more travel. For real this time. Unless I get a visit from the mini van fairy and I find a safety harness Sam ca't get out of. And I don't see those things appearing any time soon.
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