Monday, June 25, 2012

It's not about me.

It is my goal that very rarely will you read about me (Mommy) on this blog. As it stands, my support network is growing when it comes to raising my son, but on the physical plane it was non-existent to begin with, and that has been hard. I talked to a friend yesterday, because I'm battling burnout as well as anger and frustration at having people (like my son's father) near who just don't do much to help in what can be such an overwhelming situation. But I can do nothing about that, today is a new day, and my son needs me. Not to mention, he needs me happy and whole. I'm determined to be that, even if I have to turn around and tell my son I'm sorry for being an ass every single day until I get to that point of wholeness. I'm determined each day to learn from my mistakes. It is not about me.

Steven is almost three-and-a-half. His half birthday is the 4th of July, and I think I might actually do a half birthday party with him this year. He has some new friends next door (so do I, squeeee!), and I take care of them during the day while their mom works. We met because when Steven sees and open door, he will run through it, and he happened to run into their open apartment the day they moved in. Jeremiah is five, and little Ezekiel is a week older than Steven. I'm so glad that Steven has friends so close, and people who are neurotypical, so that he isn't always surrounded by kids on the spectrum. Not that that's a bad thing, but there are more NT people in the world than not, and I want him to learn to be comfortable with them. I refuse to pat people on the hand and explain them aside on behalf of my son. Instead, I plan to teach him to use his elbows. Aim for the chin son, aim for the chin. Some people can only be educated that way, anyway. Autism is not a disease. My son is not sick, he is not inferior. He looks at the world differently, and if more people did that, we'd probably be much better off.

The little guy pictured above was born only a week early, after a "complicated" pregnancy. I love Western medicine. Due to a stroke history, I went through four obstetricians only to be delivered by a fifth, because number four was on vacation. Due to being on medicaid (unmarried, so couldn't be carried on his Dad's insurance, and I couldn't work), I was put on the Ford assembly line that is the local hospitals labor and delivery unit. No ideal birth for me, as they could only bill the state so much.

Still, it was wonderful to have him here finally. Long before the word Autism was in my vocabulary, I was listening with bated breath at checkups, trying to brace myself for silence instead of a heartbeat. Praise God I kept hearing that heartbeat. And as much as he makes me want to strangle him sometimes, I still at least see evidence of that heartbeat in the fact that he scales the walls of our apartment everyday. Go Steven.

Steven's development was on track until about 18 months. He walked early, ate everything in sight, and thought it hilarious to undo every baby-proofing mechanism in the house. We finally gave up on that venture. The only thing that bothered me was how often Steven threw up.Steven emptied the contents of his stomach every day, from birth to two years. His pediatrician said not to worry, since he was gaining weight appropriately. I just started him on the Gluten-Free Casein-Free diet, and to be honest I suspect that all this time he really has had a milk allergy. I took him to get tested for one when the doctor suggested I get him screened for autism.

Autism. What is that?

Visions of my son being cornered and bullied in the schoolyard filled my head, as I drove home crying. I was tormented as a child, and I didn't want my son to suffer the same fate, especially over something he could not control. I went home and looked up autism, and realized that all of the things that Steven had started (or stopped) doing that had my now husband and I scratching our heads could be attributed to Steven being autistic. It would be 18 months before we got a final diagnosis, but we started living our lives differently almost immediately.

Steven showed many of the classic signs of autism. He lost the vocabulary he had, stopped giving kisses and making eye contact. He went from eating a variety of foods, to eating only milk, chicken nuggets and dry crunchy foods. He did not interact with other children (in fact he stepped on them at play dates, trying to get to the toy or corner of the room he wanted). If it was in abundance in our house, it got lined up. Be it water bottles, blocks or cans of vegetables. He often rocked, sometimes banging his head against the wall. He'll eat anything off the floor, but try to give him food other than what he is used to, and you'd better have a bucket nearby. He does these things to this day.

I don't belong to any support groups, though I probably should. Given my upbringing, it is hard for me to integrate with others when it comes to issues involving vulnerability. Still, I didn't really look for something to blame when my son was first diagnosed, or even in the months before when the observation was first brought up. What was the point? All I want to do is prepare Steven for whatever life he is supposed to live. I keep in mind that services for him end at 21 (may that change before he hits that age!), and I have to make the best of it now. At this point in time Steven cannot access county services because his Dad makes too much, but Dad is also more of a burden than a help. None of Dad's income goes towards services for this child. For various reasons. But all will adjust in time. School starts again in a few months. I took him out for the summer semester due to an ineffective teacher. But in the fall, I will request that Steven start up with the services he's been denied for so long.

This is Steven's journey, and Steven's story.