Tuesday, August 10, 2010

Ups and Downs

I think the worst is over, for this summer at least. My husband's hip is healing nicely. It won't be back to normal for quite a while and he still has quite a bit of discomfort but the recovery is going better than the first time he had this procedure. He has been able to drive a little this week which is a huge relief. He is trying to go into work a few hours a day which is also a huge relief. As soon as he gets home he has to lie down and elevate the leg and he still can't help out but it is good for him to get out of the house for a while.

Last week was hell week in my mind. Mark was mostly bed-bound and Sam had no ABA or other therapies. Who needs a stairmaster?

Over hell week Sam developed a new obsession - the swing. When he was a baby, he hated swings but once he was moving on his own, he loved them and he has loved them since. Over this past week, his love hit obsessive heights. From the second he was allowed outside each day he began requesting "Wee" (swing). I would push him for a while and then take a break. The second I stopped, "WEE WEE" would begin. After a few minutes break I would concede to push him again. Repeat and repeat. At some point I would let Sam know that I had other things to do (care for 2 year old, cook, clean, wash clothes, wash or feed husband). Complete tantrum. The sort that involve throwing, screaming, pulling, etc. Of course once such behavior begins, I can't give in. He must become quiet and request nicely if he has any hope of getting what he wants. We had some very loud afternoons.

Over the weekend my husband wanted to see if he was steady enough to push the swing. Very nice, don't you think? I thought so, except that he chose the middle of one of Sam's tantrums to give it a try. I think he thought he was helping me out by getting Sam to stop screaming. The thought was nice but by offering to swing Sam in the middle of the tantrum, he was rewarding the tantrum. He told Sam to get ont eh swing and stop crying so he can swing. To me there is a big difference between stopping the tantrum BEFORE getting on the swing and stopping the tantrum BECAUSE he is getting on the swing.

Sam's new medication seems to be ever so slightly quieting some, but not all, of his stims. The vocal stims are less frequent and the straws seem to hold a little less appeal but his attention span remains almost nothing. His sleep is a little better. I had hoped for more as usual but we are pretty much where we always are. It reveals a personality trait I am not particularly proud of - insane jealousy. I am so insanely jealous of people whose autistic children are progressing and learning. I am happy for them as well but in my private moments I am just jealous. What am I doing wrong? - public therapy? private therapy? vitamins? supplements? diets? home program? behavior plans? medication? I have tried it all. And still, except for potty training, Sam has not mastered a single age appropriate skill. He doesn't have a single appropriate play interest - not videos, puzzles, books, trucks, cars - nothing. If you attempt to engage him in any appropriate activity he will scream and run away. He doesn't "get" them. His most recent assessments place him in the <1 percentile on pretty much everything. I can't take him out unless I can physically hold on to him at all times. It. is. not. fair. I know the response to that is "life isn't fair" but really universe, throw us a bone here. I read about families rejoicing because their kids have learned to ride a bike or use a computer or swim or draw a picture. I can't even imagine. Sam can't even focus his eyes on anything long enough to learn to use it. Insane jealousy. People ask me all the time if he likes video games because they have heard autistic kids like video games. I can't even imagine. Sam might enjoy chewing the control or the wires but he would never connect his action with what goes on on a screen.

So there is my confession. I am not proud of my feelings but they are very real. To all of you out there who are seeing your children make great strides - learn to play, to interact, to talk to socialize, to self-care - I am thrilled for you and for the possibilities your children reveal but I am also insanely jealous.

1 comment:

KAL said...

I can't tell you how many times I've felt the same way. There are ebbs and flows. Sending you hugs.