Brave kitty, big semi

I have struggled to write this post. Believe it or not, in the past year or so, I've made a real effort to stay away from provocative language or anything drama-fied at all, but if what I genuinely hope for is autism to be well-understood, then authenticity is vital. So, as you move along in this post, know that my words are very carefully chosen. They're hard, and I want to apologize for it. I don't mean to guilt anyone into mobilizing on our behalf or to cause you worry. In fact, please don't offer help based on today's writing. I'll be embarrassed. Just pray for me; pray for us. And try to understand. That's what I really hope will come of this terrible post.

Sometimes it's just normal life for us. Then we go through these phases in which I feel like I'm dying. Or I want to be dead. I'm sorry to say it, and I'm even sorrier to feel it, but I'm not exaggerating. Sometimes, the pain I feel in suffering together with my son is so intense, I don't think I can take any more and I feel desperate to check out. Sometimes the pain comes from fear of more pain, or new pain we haven't felt yet. Or just the knowledge that we live in a constant stream of it, and it won't let up. Ever.

October is always a challenge for us. People who have lost loved ones will tell you that they sometimes go through an inexplicably emotional time and then realize, once it's over, that they just passed the anniversary of that person's death. Or they were coming up on it. I find myself struggling in October, and then I realize, oh. William was diagnosed four years ago on the 7th. These past two weeks have been pretty unbearable.

That day he was diagnosed, I remember being worried about his future. But I also felt this sort of undercurrent of confidence. We'd cure him of this. Or we'd train him so that this would be unnoticeable to others. He'd be able to start kindergarten or first grade in the public schools, and on time! We're getting this identified early, after all. And he responded so, so well to treatment.

But he's six now. And even though he still responds beautifully to treatment (for which, btw, I am immeasurably grateful) he's not in first grade. We haven't even done kindergarten. And no matter how hard I try, I absolutely, unequivocally, cannot picture him in a school setting this year, next year, or the year after that. This is not what I thought it would be. Not at all.

• Instead, I find myself fed up with the fact that our lives--the whole--revolve around what vehicles drive by our house, and how many times in a week I have to make our 45-60 minute one-way commute to therapy. Point of reference: this week was an easy one, and the number was 11. That number can easily be upwards of 14.

• I can't listen anymore to people who "know what I mean" when I describe our hardships. Chances are, they don't. A few do, and I am grateful for them. And I have a lot of friends who are so kind and humbly offer ideas or ask questions, and of course this is not what I'm talking about. It's me describing a very upsetting Wednesday I recently had during which William experienced a nuclear meltdown, and the conversational response being "oh boy, do we understand THAT!" because...no you don't. Picture the worst tantrum you've ever seen and multiply it by 1000 scaries. Imagine having to hold your child down with all your body weight--not because you're angry, but because you're afraid. You're afraid he's going to hurt himself, badly, and you have to pretty much sit on him so that he doesn't. You have to put your arms in his line of biting so that he doesn't tear his own skin open--he's going to destroy something with his teeth, and you'd rather it be you than him. And, why? Because he thought he felt the rumblings of a golf cart drive by, and he didn't make it to the window in time to see it travel from the left side of the window to the right. That's why. And that can happen in the middle of the day just as easily as it can happen in the middle of the night. Now, of course, I could be wrong, but I'm guessing that's not what most people mean when they say they "know" tantrums.

• I'm tired of being afraid for his life. He has faulty depth perception compounded by constant "noise" in his head that he tries to drown out with distracting techniques. It amounts to zero awareness of his surroundings and any danger therein. He might leave the house. He might run into the parking lot or go jumping into a friend's pool. I have stopped him in the act of all three of those, and this is not something he will grow out of. It's possible that we can train it out of him over months of therapy. Possible, but not certain.

• I cannot endure any more sleep deprivation. I'm not talking about being interrupted over the course of 8 hours. Not even 6 or 5. I'm talking an average of 3 total, interrupted hours a night...night after night, with no end in the foreseeable future. There is not enough coffee in the world.

• I am fed up with having nothing left to offer my husband or my other children.

It's funny--you'd think my weakened default would be to feel angry with William or to resent him in some way, but I don't. The love I have for him is a deep wound in my chest; it's torn open daily and I bleed and bleed and bleed. And if I could just bleed a little more to help him, I'd do it. I'd open ten more wounds if it would help him. But I don't have any patience left for anyone else. I feel angry and resentful toward anyone who might need anything. I feel my skin crawl when others look right at our lives and talk to us like we're them. Every time someone says "oh, he looks so normal!" or "don't feel bad; we have those moments too," I feel a little more alone than I already did. I feel like we're a kitten waking up every day to fight a semi, and people can look at us and never, ever see the semi at all. It's invisible to everyone but us.

Now that I have you worked into a sufficiently worried lather, please know that I will not and would not hurt myself or anyone else. I am not in a depressive state, and I know this because I have been in that place before. I feel like me, not like I'm in the body or the head of some stranger. But I feel hurt and terrified and exhausted. And I feel like God must carry me now because I am effectively paralyzed.

I beg for your prayers. I am desperate for the strength to stand up again and fight another day with my boy. I know I will. I have to. It's just...getting there.