Monday, March 12, 2012

Adventures in Williaming

For the last couple of weeks, William has been required, in school, to practice for a program that will be put on tomorrow. They're singing music from The Lion King, and I'm not sure what else. He doesn't want to do it. I know he doesn't like being surrounded by the crowd of kids onstage. He doesn't like facing the crowd in the audience. Sometimes the music is too loud and overwhelms him. He purposely misbehaves during practices, because he's hoping that will get him sent to time out, which is just sitting out in the hallway.
Today when his brother and I arrived at the school to get him, we saw them practicing in the gym. The door where we have to enter is in full view of the gym stage and he had apparently been doing okay until he saw me. He believes my appearance is his signal to leave the gym and came running to me, teachers chasing after him. It took an argument and a slight tussle to get him back to his place. As we were leaving the school, I asked him (again) what his deal is when it comes to this program. He said, "That gym is just too big for me." That may not make sense to some people, but I caught his meaning right away. He has a very hard time explaining himself, but once in a while he hits the bulls eye. I think his senses get overwhelmed and that's very upsetting to him. It's too much noise, too much light, too many people, and too much space. I think that someone who doesn't have autism just can't understand what it might feel like to have great things crushing in upon them, making them smaller and smaller to the point where they might just disappear altogether. Maybe it isn't like that at all-that's just my analogy. I have had sudden panic attacks in crowds. I once left a New Year's Eve party at quarter to midnight. I had to get out of there. I think I may have some small understanding about how he feels with these things. Ever been in a Hard Rock Cafe where the music was so loud it drowned out everything else and made you feel like hiding under the table? Imagine being affected that way by what we consider normal noise levels.
He has been overly sensitive to almost everything since the day he was born. Touch, sound, light, food, anything-but particularly touch. Practicing for this program is also not part of the normal schedule, and that upsets him too. He loves the songs, and sings them at home. So, here's hoping his program goes well tomorrow!
I also need to mention-I hope it doesn't sound like I think the teachers are mean for making him do the program. I don't! I just got back from the program, and he did a great job, and everything went absolutely fine. I yearn for normal parent moments. I want to be able to go to an assembly and watch my kid sing. I sat there this morning and thought about all he has gone through in his life, all he has accomplished, and all that teachers and teacher's aides and therapists have done for him over the years. These people have devoted their professional lives (and their hearts as well, I suspect) to these children and their betterment, and some of them are danged good at it. So thank you, to all of you who have spent your lives in helping William and all these other kids who need you so much. You know who you are.

Sunday, March 11, 2012

Pity Party Sundays

It's very hard for us to get to Church. Now you might answer, "Things are hard for everyone." But I honestly wonder. I know, we all have our crosses to bear. Here is one of my crosses. William hates Church. That I am aware of, he has not had a traumatic experience, or anything like that. He just doesn't want to go. He doesn't want to sit still in a seat while someone at the mike up front drones on about things he doesn't understand. Then, he doesn't want to go to Primary (children's Sunday school). I think there are many reasons he doesn't want to go to Primary. One, I don't go with him. His brother would be with him part of the time, but they would not attend the same class. He also has a problem being surrounded by people. Sometimes, music can upset him.
So, Sunday mornings are a challenge for me. I confess, I have given in to weakness more often than not. I tell myself all the time, that if I had just never given in, had just made him go every week, he would be used to it by now. But a very small, smarter part of me says that it isn't true. I do make him go to school 5 days a week, and that has never gotten any easier, either. Every single school morning is a fight, right up to the last second, right up to the moment that I leave him at school. And every morning, I come out of it feeling like I need a nap, or maybe a baseball bat to the head. So lots of Sundays, we just don't go. My husband works all weekend, morning to night, and so I don't have anyone to help me-but I don't know if it would make any difference. I think I average 5 or 6 weeks between each Church attendance, and I'll tell you, when you are a Mormon, that makes you "inactive". I don't like being inactive. I want to be active. I want to teach a Primary class or be the Relief Society secretary or give a talk in Sacrament meeting once in a while. But if you are not active, they tend not to ask you to do those things.
This morning I got up, and said to myself, "Today, we go." I came down the stairs where the boys were already up, and I was in my Church clothes. William went into panic mode. He cried. He screamed. He laid on the floor. He hit. He kicked. If there is someone out there who thinks I should step up my attendance efforts, one of these days, I'll video this encounter and let you watch it. You'll change your mind. And don't get me wrong, in our Church, I have never encountered anything but understanding. That I know of, no one looks at me and judges me for not being there every week. I don't need anyone to judge me that way, because I do it myself. So anyway, I finally fought him into his clothes, his little clip-on tie. Sean had calmly informed me that he didn't want to go, but with him all I have to do is say, "We're going." He shrugged, made no further comment and appeared shortly in his dress clothes. We did go. We sat through that hour. But I can't get him to go to Primary no matter what I do. Sean likes Primary, but there seems to be nothing I can do to induce William to go. So when we do go, we attend the first hour and then go home. So they don't get their lessons, and I don't get mine, either. But that hour is always better than nothng.
I think one of the reasons I have such a problem is because I have this issue with him every day, preparing for school. I do it 5 times a week, you'd think making it 6 wouldn't be such a big deal. But somehow it is. The unbearable weariness of it all. I wonder all the time, "Am I really doing my BEST?" And, "Is it enough?"

Tuesday, March 6, 2012

Updates on Sean and William

I was just reading an old post, Sean's Future In a Trenchcoat. I am relieved to be able to say that we don't have this issue with him anymore. That was at the beginning of his kindergarten year, and now we are halfway through first grade. He seems to have outgrown this problem.
William, on the other hand, is now halfway through the fifth grade, and can be counted on to appear in the nude at just about anytime. I sure hope he grows out of it, but he is going very slowly. He has been known to get past issues and have them resolved, but the overcoming of one problem takes him a very long long time, years, typically. They call it a delay, they call it slowness. What this means to me in my hopeful heart is that he will get there, someday. He just isn't going to get there at anyone else's pace. I'm glad this isn't a race, because he will probably come in last. But in a case like this, the important thing is not to get to the finish line first, but just to finish the race.