Autism Sucks

How soon we realize after one of our children receives a devastating medical diagnosis that the dreams we had for that child are only our dreams, and not necessarily what will become of his or her life. Throughout my pregnancy, I would hear commercials on the radio, read billboards or see entire television shows that discussed the rising rates of autism in the US. At 18 weeks pregnant, it was confirmed a boy was on the way, and I couldn't shake all that I had heard or seen and I worried constantly about my unborn child. I have a friend who worked with special education students who would remind me that I was healthy, that the odds were in my favor, etc.,but I often worried that something would turn out wrong with my baby boy.

Well, Carter made his debut on July 25th, 2006. He was a beautiful but fussy baby from the very beginning. I used to poo-poo people who talked about the mother-son bond, but as soon as I held that boy in my arms, I wanted to consume him, have be all mine, and not share him with the world. He was just so perfect, and I was in love. A love that I had never felt before, a love that was part rapture and part possessiveness of this small, perfect, beautiful boy.

Carter started losing language at around 20 months. He used to point to a family picture and just rattle off our names..Mama, Dada, Alice (he couldn't say Alex). Suddenly, when I showed him the picture, he wouldn't respond. The books he would have me read over and over again were of no interest to him anymore, and he would find enjoyment staring at a leaf or other non-appropriate toy. My family and friends all told me I worried about nothing, that he was fine. Boys talk later, they would say, or that their son didn't speak until age 5. But I was his mother, and I knew they were wrong. I knew my worst fear was unfolding before my very eyes, and the doubts of those around me only frustrated me more.

An actual diagnosis didn't come until he was age 3 years and 3 months. He speaks very little, still fixates on non-toys, and has terrible temper tantrums. He has typical GI symptoms and disrupted sleep patterns that awaken the entire house at an ungodly hour several times per week. He is in therapy and a special education classroom that has helped somewhat, but he has a long, difficult road to follow.

Is it wrong to say that I do not embrace this disease, that I cannot come to terms with what has happened to my beautiful boy, to be so angry at everyone who has "normal" children? Errands must be run very quickly when Carter is around, babysitters must be chosen very carefully, and a weekend away is a huge burden to ask of my parents, who help him as much, if not more so, than Chris and I. I hate autism. I hate it.

I know he could be a lot worse off. I know he is considered "high functioning" and I should be grateful for that. I'm not grateful though. I dread the last school bell of the day, because I know in one short hour I will have to endure the screaming nightmare of what used to be known as dinner. That going home means flying down the freeway to make sure my dad doesn't have to be with him alone for too long. What kind of mother dreads the end of the work day? What kind of mother am I who at one point couldn't bear to let anyone else even hold him, now can't wait to get away for a couple of days of peace and quiet?

Chris tells me not to give up on him and that we need to do is to keep hoping that he will continue to show progress, but he fails to see why I am struggling to accept what is happening. That I love my son more than anything on this planet, but I miss our lives before this happened to us. The weekends away, the fun trips to the beach with Alex, eating out instead of take out, a normal family dinner, dropping my kid off at the first day of preschool, hearing the words, I love you Mom, play dates, etc. Instead, I am changing size 7 diapers on a boy who might never be able to live alone, and sometimes all the love I have to give doesn't seem to be enough to make life okay.