Miracles out of nowhere

I haven't had a whole lot to smile about lately, just because life gets me down.

But today....

Today I went to school to meet with Stephen's "team" for his three-year re-evaluation. They needed my permission to start re-testing him so we can see where he is compared to three years ago. They didn't have to, but everyone at the meeting took time to tell me how much they love my son, and how he makes them smile every day, and how they watch him interact and learn, and how it makes their jobs feel so fulfilling, and they thanked me for trusting him into their care. What a powerful thing - to have people trained to do a difficult job thank ME for letting Stephen come to them each day. I was at once humbled and grateful to be in this place at this time.

But the best part was when I snuck down to Stephen's classroom, and peeped in (so that he wouldn't see me). There sat my little wild child, dressed neatly in one of his many striped t-shirts, in a little blue chair. The other kid who's in the room with him most of the time sat beside him, and the aide was having to hold him in his chair. But not Stephen...he sat there independently, facing the teacher, little Nikes planted firmly on the floor, and although I couldn't hear him, I could tell he was participating in circle time, as they talked about animals, and then talked about the day of the week, etc. He flapped his hands a few times but other than that there was no sign of his autism. You can't possibly imagine the elation I felt, getting to see him in this environment.

The little boy who can stir up quite a ruckus at home was sitting at school and learning, just like any other child would. I was on my knees in the hallway, looking through the tiny window, seeing his precious little head and his ears that stick out just enough to be cute...and I couldn't have loved him more. Tears streamed down my face. Proud doesn't even begin to cover it. He has so many dragons still to fight, but today...today I saw the evidence that he has certainly slain a few of those buggers.

Today is a good day, and we like to hold on to those. Mark it down, celebrate it, savor it...they are few and far between at times, but damn it if they don't feel twice as good when they happen. I didn't expect this miracle out of nowhere. Sometimes those are the best kinds.

Here we go again

I'm a bad blogger.

No update in over a month. Not even a pathetic little: "Oh, man, what a shitty summer!"

My lack of blogging correlates with my level of stress. Once I pass a certain point it is best for me to avoid writing. Otherwise you'd come here and see something like, "Oh god I want to disappear, everything is horrible, *(&$(*#&$*&^....."

And who needs that? Nah, best to just stew in my juices and wait for school to start back.

And so, it did. Last Thursday. And all our problems were solved!

Well, not quite. I was just thinking this morning how we LONGED for August 7. We held on by our fingernails, waiting for the day to come...and now, it's sort of hit-or-miss if Stephen does okay getting ready or not.

But let's back up and talk about how things have been since I last wrote something here. I mentioned the Risperdal, which was FAR from the answer for us. We increased his dosage since the minimal dose didn't do anything to calm him or lessen the tantrums and we noticed a charming side effect. Increased appetite coupled with nausea. How's THAT for a winning combination? Our family trips - going out to eat and maybe to the bookstore - were curtailed because every time the dear boy ate his favorite McD's burger and fries, he puked it all back up. Result? We became even more isolated and angry. Our ONE outlet was gone - the one sort of "normal" thing we could do as a family had been taken away.

The doctor insisted that it wasn't the meds making him sick, since it only seemed to be the McD's food bringing on the puking, but somehow we just KNEW. Okay, sure, you could argue that nobody really needs to eat that crap, but c'mon...we have to fight our battles the way we see fit, and right now, that isn't at the top of the list. Once we decided to cut back on the Risperdal, (we still give him a miniscule amount at bedtime because it helps him sleep) the nausea disappeared. So the medicine that was supposed to make him calmer didn't calm him and gave him nausea. Hooray for Big Pharma!!!

Another summertime development was the fact that Stephen went to a special autism dayschool for 2 hours of therapy 3 days per week. I think it helped marginally - at least it gave his brain something to chew on for a while, but it wasn't nearly enough. I wish I could campaign full-time for year-round school for kids like Stephen. I mean, the school system will acknowledge how important consistency and routine is for kids with autism, but at the end of the school year they wave bye-bye and smile..."Have a GREAT summer, guys!" Yeah, sure. Wanna trade lives for June and July? We need more, and I'm going to fight for it for next year. I simply cannot afford to pay for private therapy; certainly not in the amounts that Stephen needs to keep himself occupied and challenged, and that his family needs to keep from going insane.

There were times over the summer that we all thought, "We can't live like this." The screaming, the "don't do THAT, it might upset him" walking on eggshells, the nights with little to no sleep...all of it together had David, Kerry and myself tied in knots, and escaping any way we could. Kerry dove into the world of Legos he has created for himself, where everything is in his control and he can change it if he doesn't like it...and he also began writing in his journal again. David worked with making CDs and editing music - the headphones are great for blocking out stuff. And I read. I read lots of stuff. The best thing was re-reading the Harry Potter series, all seven books in order, which I hadn't done before. I found myself literally living for the moments I could steal, to bury my nose in a book and send my mind on vacation. I became rather profoundly depressed when I finished the 7th book because THEN what was I going to do? Sit around and THINK? Ha!

The future is a topic that I have often run from...reading provides a nice escape until reality bites me in the ass and I'm forced to contemplate what the future might hold. As it stands, we have an 8 year old who is big and strong and who basically runs our lives. What happens at age 13? 15? 20? I had to come to grips with the harsh reality that one day, I may not be able to care for Stephen. If I'm nervous and afraid to deal with him now, what happens when he's bigger than I am? It's a tough thing to look at, head on. I've turned away from it for the last time. This summer I had to accept that I cannot do it all. You have no idea how painful it is for me to admit that. You might think I have some kind of martyr complex, but I don't. I simply grew up with the idea that pretty much everything in the universe was up to me - keeping everyone happy was MY job. I never outgrew that. Until now.

Not too long ago I had an epiphany of sorts. Someone asked me, quite sincerely, "So, how are YOU doing?" I said, "Well, Stephen's had a pretty good week so far, so..." She interrupted, "No, how are YOU?" I thought for a second and said, "Things have been okay. Stephen has been..." She stopped me once more, and with a gentle reprimand in her voice said, "Michelle...how are YOU? I'm asking about YOU, not about Stephen or anyone else."

Something in me relaxed. Or broke. Or collapsed. I cried without restraint. I couldn't even answer the simple question I had been asked. Someone was asking how I am doing, and I couldn't extricate my own well-being from everyone else's in my life, specifically Stephen's. I realized that day that I couldn't comprehend having a happy life, or being the person that I used to be, as long as I have a son with autism. I had tied my SELF to him. Well, it's understandable, no? Everything he does affects me in some way. How can I be happy if he (or someone else I care for) is UNhappy? I've danced around this topic before, but it all became so clear that day. I feel lost. I feel that the person I used to be no longer exists...

I wish I could tell you that I've made great strides in reclaiming myself. But I haven't. Not yet. I will say that the recognition of the way things are has sparked a tiny bit of hope inside me. I don't know yet how it will be accomplished, but I've been searching out various ways to find some respite - some time that someone else can care for Stephen so that I can remember who I am again. Time for the rest of the family to relax, for Kerry to be able to play without worrying, for us to see movies or go out to eat without being on guard. There are possibilities, and for now, that's enough. It's enough to know deep down that even though I still FEEL like I'm carrying the world on my shoulders, some day I'm going to find some ways to lay it down for a while.

So...back to the grind of school days for both boys...Kerry is in 5th grade and seems pretty happy with his first week so far. Stephen is classified as 3rd grade. His autism-unit teacher seems very capable, and everyone at school already loves the kid. He's in good hands. He will adjust to going back every day, and hopefully life will assume some sort of a pattern so that I can make some plans, and find some real avenues of help. Next summer will be here before I know it, though, so by then, I will have things lined up. We can't go through another summer like this one has been.

Joseph Campbell said, "It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure." I've stumbled, Joe. Now, I'm digging for the treasure.

I'll keep you posted.