Autism hurts

Autism hurts.

Autism hurts my innocent child, who had no control over what happened to his brain and body. I have no idea why he cries sometimes, why he pounds his head or wants "Pushes, please." It torments me not to know what is going on.

Autism hurts my family. The chaos, the storms of emotion and anger and screaming and tension...they make us tight and sore and exhausted. We walk around shell-shocked after a bad time with Stephen. We don't get invited out...you know, to be with people. I think we scare them. We're still a family, even if we're not like yours.

Autism hurts ME. I carry around the weight of uncertainty for the future, apprehension for the present, and anger over what has been robbed from me. I held this baby in my arms, loving him from the instant I saw him (and before) and imagining his future, tagging along after his big brother. Those dreams, though dashed long ago, persist. They won't go away. I see other siblings and my heart aches with an indescribable longing to just FIX things, damn it. I am bitter and jealous and cynical, and I detest those qualities in myself. Why can't this get better? Why?

Of course there are moments - times to catch my breath, to laugh with Stephen, to lose myself in a hug from him, his hair smelling of shampoo - but there's always the dread of when the next problem will arise. Don't tell me that I can't live like that, that I should be more positive...I try, believe me, but history proves me right on this. Fact: You relax too long and you get kicked in the teeth - sometimes literally.

There are more things to worry about than there are hours in the day. His diet remains horrible. Carbs, carbs, and carbs, with a side of carbs. His belly is huge and distended - he is plagued with horrible gas (and pains, I'm quite sure). He does take a vitamin, but come on...the kid hasn't eaten a vegetable in years. Potty training remains a pipe dream. And, damn Walgreens to the fiery pits of hell, they CHANGED the sleep pants that fit him so well, and were soft and comfy and stretchy. Now they're different. New and improved, my ass. They're rough, brittle, half as stretchy - they rip when we're trying to put them on him. I wrote the company, I complained, I bitched...I was asked to submit "before and after" samples, so I did. And nothing. No response. I was buying $150 of these things a month! We're using the Rite Aid counterpart to these, but they are only marginally better. And the smallest adult diapers are too long for him - they come up to his armpits and don't fit around the legs... These and other issues keep my gut clenched in an iron fist.

I'm tired of it. Tired of it all. Tired of coming home not knowing how he's going to be. Tired of constant struggles to fund respite care, to buy diapers, to have a life. Tired of looking at my child, wondering what he would've been like without this damned disorder. Tired of listening to people complain about their "hard to manage" kids, and having the gall to say to me, "Yeah, I know - being a parent is hard." Oh, give me a break. If you can TALK to your kid, and he talks back, he pees and poops in the toilet, and you can live your life without constantly planning every minute, then shut the hell up.

I know this is coming across badly.

(Everyone has issues, you say. Everybody has problems and pain and disappointment, you tell me, as you pat my arm. Don't act like it couldn't be worse...it could be, you murmur, and put your arm around my shoulders. Yes, but...this chronic, daylong, nightlong, yearlong, lifelong sorrow drains me...I feel my lifeforce ebbing away.)

At times I feel I can't bear up under it all anymore. I've lost patience with people who spout platitudes and never back them up with action. I'm sick to death of worrying about what the future holds for a boy who will never be able to care for himself. I'm tired of hurting...for me, for my family, for Stephen. God love him, he has no idea what autism is...the world must be bewildering to him at times. Sometimes we marvel that he is manageable at all - and yes, at times, he IS. But then, there are the other times...last night he asked me for "chicken" at least 25 times. His stomach was stuffed, and we HAD no chicken anyway. If we HAD chicken, he might eat two bites. But every time I said, "Chicken all gone," he cried, the cries escalating each time in volume and intensity. I couldn't eat my own dinner because I had to sit on the couch and push on his head for 20 minutes - trying to calm him down.

Lately I've found myself sitting, staring at the computer screen or out the window, with no recollection of how long I've been doing that. I'm more forgetful than ever. Common sense, something I've long sought after, is laughing at me as it speeds ahead productively. I feel like I'm slogging through some sort of thick, syrupy substance, feet dragging, heart pounding at the effort. How does one persist? What choices do we make about the future when none are acceptable? How do we do it?

I don't know.