The other day I decided to watch the news. I don't know why. I never watch the news. First of all, it's depressing. Second of all, I don't have time. But this time I was watching some sort of news program and it featured a British man named Tony Nicklinson who had been very active in his life. He suffered a very serious stroke that left him completely paralysed from the neck down. He communicates using a computer program coupled with blinking and head movement. He has petitioned the high courts in England to allow a doctor to assist him in ending his life. He argues that the current law is discriminatory...that other people, who do not share his circumstances, can choose when to end their lives and he cannot. You can read his story here and watch a news clip:
http://www.guardian.co.uk/society/2012/jun/19/locked-in-syndrome-murder-law
What Nicklinson has is called "locked-in syndrome". He is, essentially, a prisoner in his own body. He needs help with every single aspect of his life. As I read about his story, I felt so sorry for this man...to have been so active once in his life, and to have it suddenly taken away...I cannot begin to fathom it. As I listened to him, I also thought, at least you can communicate. As soon as I had that thought I shoved it away. I try to make it a habit not to judge other people anymore. You can't know what someone's particular situation is like or why they think or do the things they do, and in their own minds, a person's decisions and actions may seem justified at the time.
Can I equate this to Logan, and to autistic people in general? Some people may say it would be like comparing apples to oranges...the two things are not remotely the same and there is no comparison. But there are some autistic people who have great intelligence. They can run, move, climb...pick things up and put things down, create works of art or messes on the floor...but they cannot convey a thought, not the way we do. When Logan first started going to public school, he was tested. The school said that they suspected he could do a lot more than he was showing them. But they had to base their findings on what he was exhibiting and what he was exhibiting was a child who was mentally deficient. I've observed Logan, at home, when there is not a panel of teachers and diagnosticians watching what he does...and he has sometimes displayed a frightening awareness of certain things. But he cannot control his vocalizations, and sometimes he can't seem to control his own body. Does this make Logan "locked-in"? Certainly there are many doors that are closed to him and that will remain closed for the rest of his life.
Do I have locked-in syndrome, as a mother of an autistic child? When you parent someone like this, there are things you just can't do anymore. A trip to the local swimming pool, a hike in the state park, a shopping trip at the mall...these are major ordeals. Why? you ask. Why does it have to be a major ordeal? Aren't you making a big deal out of something that isn't? Why don't you just bring him and see what happens?
I know what happens. That's why I don't.
Take the swimming pool. I love to swim. I love the water. Given a body of water, especially if it's clear and cool on a hot summer day, I will stay in there for hours and hours. Logan also loves water. He loves water so much that he will jump in the water without pausing to consider how deep it is or if someone is trying to swim below the surface. Autistic children don't have a lot of inhibition when it come to danger, remember? So we don't go to the pool. There is no way on God's green earth I can hold on to Logan and a four month old baby at the same time without someone having a near-death experience. Because the questions that come to my mind are: what if Logan runs away from me? What will I do with the baby if I have to chase after him? If someone watches the baby, fine...but what if he gets away from me, and I don't get there in time? What if he jumps off of something he's not supposed to jump off of? what if what if what if???
Take hiking at the park. This might be doable. But then those pesky "what ifs" swarm again...what if he runs away, gets lost, etc.?
Take the mall. This is probably the worst place I could ever take Logan. It's big, echo-y and loud. There are people everywhere. Lots of stores with lots of textures and smells. A place loaded with what-ifs and overloaded with sensory nightmares for someone like him.
So do I have locked in syndrome? There are things I can't do and places I can't go for the most part. Logan is worth it. But it does get depressing. And anyone who says it isn't, is lying. Or perhaps just trying to stay positive all the time, which is admirable but not practical and certainly not honest. I miss being able to just leave. And go somewhere. Without worrying about it.
We have a chest of drawers in our living room and on the top of it sits "The Game of Life". At church on Sundays there is a particular person who always comes up to me and says, "Who is winning?" He sees me struggling with my son. I don't know if he's amused or sorry for me or what...but finally, one day, I just stared at him. I said, "I am always winning."
And I am.
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