Tuesday, May 24, 2011

it's a lot like a good smack in the face with a frozen salmon

I know I have not been blogging much at all, despite school being done for the summer (mine, not Jaymes's) and everything settling down somewhat. There has been a lot of craziness going on, and both myself and my husband are really coming to realize that no matter how hard we push Jaymes to get out there with the other kids, or how hard we push the school to accept him, Jaymes is autistic, and we don't have a happy ending at the end of the line somewhere.

We never grieved when he was first diagnosed. I think I dove into my researching in order to hide from the realization that there is no cure for autism, and that our lives would never truly be normal. I chose blissful ignorance, and my husband went with denial. It's worked well for us, up until now.

There isn't a lot left for me to research. I still look into legal stuff, as far as school goes, because no matter how much I learn, I need whatever I can get for these damned IEP meetings. But beyond that, all I really have left is reading stories of other families and their challenges with autism. Lately, for some reason, even the heartwarming stories make me want to cry. Not in a good way either. I don't know why. It just seems like for the both of us, the reality of autism has become so big and obvious that we can't avoid it anymore.

Jaymes will be eight in December. He'll be in first grade, after two years of Kindergarten. He will never catch up to the typically developing kids, and no amount of mainstreaming him is going to magically transform him. The school won't hold him back every year, because at some point he HAS to go on whether he has caught up or not. He'll never bring home sports trophies, he'll never win a spelling bee. Our lives will never be "normal." I do not hate the things about Jaymes that make him Jaymes- the funny sounds are ok. The need to hold my hand is ok. The carrying around of some sea critter with tentacles is fine. I don't care if he's twenty years old and carries his Jellyfish. I really don't. The thing that gets me down is that there are so many situations he will never feel safe in, so many activities he won't be able to do for various reasons. There are so many friends he won't make, and so many special events he won't be able to participate in.

I am ok with my husband and I never living a normal life. It's hard, but it's the reality. What kills me is knowing that JAYMES won't be able to live a normal life. What happens to him if something happens to me? What happens when he is an adult and I can't take care of him? What happens if he is still in diapers, twenty years from now?

The thing that really brought this whole thing to the level it is tonight, would be the school play I was so excited about. When I got the note home about it, I was both shocked that he was being included, and elated because I would get to see him in his play. I never thought I would get to go to a school play, sit down, take photos, and clap for my kid like everyone else. That he was even involved blew my mind. That was thanks to his truly wonderful regular-ed kindergarten teacher, Mrs. Walter. Prior to this teacher, Jaymes had not been included in much of anything. I was just so excited to see Jaymes so excited about something that was so "normal" and such a routine part of life for his non-disabled peers. He'd been doing the play practices, and had been doing great. He came home telling me about the play. He was so excited.

We wondered what he would do in the play. We wondered what songs he would sing. We wondered whether he would actually sing. We wondered if he had any lines to say. We wondered if he would wear a costume.

We should have wondered about more practical things. Would it be too loud? Would the many, many kindergarten kids make too big of a crowd? Would Jaymes be ok with the music? Would the crowd of parents frighten him? Would he be able to sit still? Should we have turned off his hearing aids? How would they keep his attention on the task, and keep him from wandering off?

It wasn't Jaymes's fault. I should have thought of these things. I'm his mom, it's my job to make sure he isn't put in a situation that is too much. I totally failed him on that. He tried to handle it, he sat with the other kids for the first ten minutes or so. He spotted me, four or five rows of seats back, despite my hiding behind a large bald gentleman. He made a break for it as his class filed in, then again a few minutes later. I brought him back, and told him to sit. He went, he sat, he popped up, ran to the microphone, and talked into it for a second until teachers put him back down. Then he got back up, and ran to me. This time he was starting to cry. I sent him back again, this time with promises of ice cream. He went back, he sat. As the first bunch of singing began, he RAN for me. I picked him up, and he was crying and shaking. He was covering his ears, and he desperately wanted out of the gym. We walked out into the lobby, and he sat there and shook and cried. Then I cried. And we looked like we were both insane. The vice principal tried to make me feel better, pointing out how well he had done at the practices. The sweet music teacher who teaches the EC classes music came over, and tried to make me feel better. She told me all about how hard these things are, even for normal kids. She was right, but I had to have my self pity moment.

I felt so horrible; both for putting Jaymes in an unfairly complicated situation, for Jaymes having "failed" in front of everyone, and for myself not getting to see him in his play. I know that Jaymes did the best he could, and he certainly did not fail anyone. It just felt like I spent so much time in the last few years pushing the school to accept Jaymes, and trying to show them that he could handle himself if he were included. It felt like I set him up to fail.

I didn't even know he was in this play until last week. I got a note home about it and I was so excited and so proud of Jaymes. I felt like it was a miracle, that I would get to have a special moment (one that many parents take for granted) I never thought I'd see. I know it's totally selfish to think this way... But I'm human and not above a little selfishness and self pity.

We walked around the school, which was empty and very quiet. Jaymes loved this. He stopped crying, and he stopped shaking. We came back up to the gym doors, and he started shaking and clinging again. Obviously we were not going back in there. Outside the one set of doors, there are a couple squishy couches with pillows. Jaymes laid down on one, and covered his head with a pillow. After a few minutes, he calmed down and emerged from his pillow cocoon and played with my iPhone. The boy loves his apps and he knows how to use the thing a lot better than I do. I was proud of him for being able to sit out there, where there was still a lot of singing and music from the play and clapping and everything else. He managed to sit there for the rest of the play, and then went back to the classroom with his group. By then he was happy, and calm. I was far from happy or calm, but I was glad the kiddo had managed to stay calm. When the gym emptied out; except for a handful of parents, kids, and staff, Jaymes and I went back in. He didn't want to at first, but once he realized it was quiet and empty, he was ok. We walked around and he looked at the three piggie's houses up on the stage.

When we got to the car, Jaymes hopped into his seat and said "can we go to Walmart? Jaymes want Chicken-In-A-Cup." So off we went, to Walmart.

I'm torn on this, feelings-wise. We handled the issue, Jaymes still listened to the play and sat still. Jaymes went back into the gym. It wasn't the disaster it could have been- he could have decked the kid next to him, or pulled down his pants or something. He could have started screeching on the stage. He responded very appropriately, considering how overwhelmed he was. I'm proud of him for knowing he had to get out and seeking me out.

On the other hand, it breaks my heart that this was so hard on him. I wish I'd gotten to see him enjoy his play, or even sit there without singing. I really wanted to feel like a normal, ordinary old mom. I wanted to brag about how well Jaymes did. I wanted people to see that he could do it. I know most of this isn't logical, nor is it fair to expect these things from Jaymes. I am far from upset with him, and I am proud of how he handled his fear. I'm just sad. It feels like a slap in the face, like he was just doing too well and maybe God felt the need to give me a very clear reminder than Jaymes is autistic, in case I'd forgotten.