Friday, April 25, 2008

Autism (A Gut Reaction)

Note: I originally posted this essay at the end of April, and took it down the next day because it sounded so unhappy when I re-read it the next morning. And if you've been following this blog, you know that something has to be pretty darned unhappy for me to remove it from the blog. However, within the next 24 hours I received two different e-mails from people who had already read it and had intended to forward it to other people they thought might want to read it. I think that is a good enough reason to put it up again, even if it is a reflection of one of my darkest times. Thank you for sticking with me through the black nights as well as the times that make you laugh so hard you spit your coffee on your screen. I'll try to make sure there are some more of those moments soon.

I hate it.

I hate it. I hate it with everything in my being, and there is nothing I can do about it. It has stolen my son. I don't know who he would have been, and no amount of touchy-feely rhetoric will change that.

Yeah, I know. God made him the way he is.

Yeah, I know. Evolution has its quirks.

Yeah, I know. S**t happens.

But you know what? This is my son. My baby. This is the little boy I live with every day of every week of every month of every year, and I hate autism. I hate that it has taken a piece of him away, tied him up in some inscrutable web that cannot be untangled. I hate that he knows who I am but cannot KNOW me. I hate that I love him but will never be able to truly communicate with him. I hate that he will never grow up.

I hate it that I carried him for nine months (almost ten, he was late) in the deepest most secret part of me, and I do not know him. I know what he likes -- Peter likes Cheddar cheese, strawberry yogurt, Calvin & Hobbes (he REALLY likes them), his friend Gerrit, Wheat Thins (but not Ritz), Toy Story, turkey sandwiches (if they are cut up into 16 squares and served with a toothpick) and sunshine.

He does not like Swiss cheese, pasta, ground beef, roast beef, chicken, rice, the dark, the Grinch, mud, and sometimes he does not like numbers. Any numbers. Adding, counting, doesn't matter -- numbers are bad, on some days. Pasta is bad EVERY day, except some of the time when it is acceptable with my mom's tuna casserole recipe. Even then it's touch and go, and otherwise, pasta and rice are sent directly from the Pits of Hell and are not to be consumed. And if we consume them, we throw up.

I am tired of vomit.

I am tired of separate meals.

I am tired of the short bus.

I am tired of wondering who my son is.

I am tired of the nagging sense that there is something I could have done differently ... some vaccination (or lack thereof), some food (or lack thereof), some thought, some prayer, some wish, some hope that could have made my son be who he was supposed to be. I don't know him. I wish I did. But I don't. He lives in a world that intersects mine maybe 60% of the time. That's great, in that it used to be about 10% of the time. But really, 60% is incredible and it might be as good as it gets. This might be as much of my son as I ever get to know.

If he ever gets a job, I will have to help him apply for it.

If he ever lives alone, I will have to make sure he is paying his bills.

If he has a friend, I will have to make sure they get to "play together", even if they are thirty-five years old.

He will never graduate from college.

He will never get married.

He will never hold his newborn son in his arms and think, "This is my son ... this baby will carry on my name after I am dead and gone."

He will never hold his wife in his arms and think, "This, this is all I want. She is all I want. She is enough reason to work and live and love and exist, and nothing in the world compares to her." Instead, he will go to his supervised job and hang out with his supervised friends and sleep in his supervised apartment paid for by his supervised paycheck.

There is no grief that compares to losing a child. My best friend has lost three children from early pregnancy to six months old, and I know that my grief is a pale shadow of hers. But the grief of having a child that remains a child, a child who will never truly know you or be known, is a pain all its own.

I don't expect you to fix it, to understand it, or to have an answer for it. But sometimes telling it makes the grief a little less.