This was originally published 4/20/12, but I'm reposting and dedicating it to Mikaela Lynch, Drew Howell, and Owen Black--three autistic children who drowned this week. To their families and friends, I am so sorry for your loss.
It is easy to judge what you don't understand.
The parents of Mikaela Lynch, a little autistic girl who drowned this week, are being criticized. People are saying she was a bad parent, because her child was prone to wandering.
It hurts me to read. My child is prone to wandering too. He is also drawn to water. Does that make me a bad parent?
I have had the scariest thought in the world this week: It could have been Derek.
See this sign? There are now two like it in the small town where I live. Why? Because I live near a main street. Tractors go down this street often (I live in a farming community). Kids on their way to school speed down the road. They don't pay attention to whether or not a little boy is out wandering by himself. I'm talking about my son, who has no concept of danger. You can lecture me as much as you want on how I need to keep a closer eye on my child. I am not perfect, though I try to be. I keep safety locks on my doors and watch my son as carefully as I possibly can. But he is an escape artist. And if the door is left open by my OTHER son, for even a minute, Derek is out the door before I can say "STOP."
Derek's language has improved 10-fold in the past year and a half. He is speaking some, and understanding LOTS. He knows what "No" means. If a ball is rolling toward the street and Derek chases after it, there is maybe a 50/50 chance that he'll stop when I yell. This was not always the case. In the summer of 2009, my son had no language at all. He didn't know that words had meaning. If I yelled "No" back then, nothing happened. He didn't even respond to his name. That summer was terrifying. I lost Derek 3 separate times (once for a total of 10 minutes)! I grew eyes in the back of my head that summer. I became what most call a "helicopter parent."
When you lose a child, for any amount of time, something happens to you. The fear is immobilizing. Visions of your child splattered on a highway invade your thoughts. Images of them floating face down in a pool or lake haunt you. And even thoughts of your child being snatched by a kidnapper surface.
How do I lose Derek? Let's see. One time it was because I was putting sunscreen on his brother and Derek turned the corner and went behind the house. 30 seconds and he disappeared. Another time it was because Tyler got bug spray in his eyes and I was trying to help him get it out. Yeah...things like that.
Ten minutes is not a long time. Ten minutes is nothing. But when you cannot find your child? Ten minutes is an eternity. When I finally found Derek that final time, in the neighbor's backyard, I vomited into the bushes. I was shaking so badly my teeth were chattering.
I vowed then and there that I would do everything and anything I could to keep my child safe. I notified my local police/fire department that I had an autistic child prone to wandering so that they would be aware of the situation. I talked to city officials to get the sign up above approved (it took 7 months of researching, attending town meetings, and bugging city officials). I also got my son a Medical ID for his wrist to notify people that he is autistic and nonverbal. (He cannot give you his full name, address, and phone number when asked. Half the time when I ask what his name is, he answers "Mommy.") I wish our town offered Project Lifesaver, but it doesn't. Maybe someday.
To the families that lost their children this week: my thoughts and prayers go out to you. May you feel the arms of the special needs communities around you. We are all in this together and we support you. You are not alone. We will never judge, because we have been there too. We are crying with you.