June 6, 2008 § 11 Comments
When Kyle comes home we spend a few minutes together sharing our days with each other. Yesterday he met a co-worker with a child who is on the autism spectrum. Somehow this came up and they had the chance to talk. Her son is getting older, just approaching puberty and is becoming violent at times with her. He has always had melt-downs, the rare and occasional fit. But as he gets larger and stronger it has become more and more an issue. Her son had pushed her down the stairs breaking her arm.
I think I am ready to talk about this. I think I am ready to say all this, here on this blog, here in semi-anonymity: My daughter is severely autistic and in residential care. My daughter can be violent, she can hurt people, she has hurt me, her dad, her siblings and her care workers. We did the best we could and we still do. You can demonise me if you like, you can say I didn’t try hard enough or do the right things. I know what we went through. I know that we tried everything we could and in the end made the best choice possible. And I know I am not alone, but for a long time I felt like it.
A friend of mine told me about having taken her autistic son to a Dr appointment. While waiting her son began to display minor characteristic behaviors, humming and hooting, repetitive rocking movements. An old woman in the waiting room asked “Oh, you have a disabled one here?”. My friend was at first offended, “yes, yes I do.” she said. The woman leaned over and whispered, “It’s ok dear, I have one too.” The old woman’s son was in his fifties, she would use cloth restraints to tie him to the bed when she left home because if she didn’t he would become stressed and destroy the house.
It is almost like being part of some underground. There are parents of normal kids. They don’t have the foggiest idea what it can be like. There are the parents of autistic kids who don’t exhibit violent behaviors that are in ways worse. Some are sure if you were doing what they are doing then your child wouldn’t have those behaviors and they have no problem telling you that you need to do this or that. Ironically I know that some of those same parents flip when the parent of a normal child makes suggestions about how they should change their parenting and their autistic child will be better. They mean well. I know they do. I know a good many of them would give support and help if they knew how. But they don’t know what to say. Our lives are so far beyond the norm, even for autism.
Other parents of autistic kids can see it coming and they are terrified by it. They know they can’t control their five-year-old’s meltdowns, they hope their child will outgrow them, they have no idea what to do if that doesn’t happen. We parents of autistic children with aggression issues usually don’t talk much. When we find each other, we start sharing stories in hushed voices, at some point realising that the other understands. It is such a relief. Someone who won’t condemn you , someone who knows, who has the been there and understands the pain.
Three years ago I would have given ANYTHING to be able to get online and find one person who understood what we were going through. Anything. We were totally alone. When I first wrote about Rachel on this blog I started seeing searches coming in about autism. The most heartbreaking were the ones I had typed in myself a couple years before: “Autism and aggression”, “Teen agression or violence + autism”, “Residential placement for autistic teens”, “Support autistic teens”, “I have failed my autistic child”. It was like reading Post-Secert or something. Pharses that spoke of someone out there trying to find something, some help, some hope. And to end up here where there was one post about my austic daughter? That seemed so desperate.
I am going to write more on this tomorrow. But for today I just want to let any parent with an autistic child with severe behavior issues stumbling in here to know, you aren’t alone. I have been there too, I still am in ways. I know what it is like to read over an autism forum and close the window because you know that no one will understand. There are things you can do but it isn’t easy. Residential placement can be a very good thing not just for you and your family but also for your autistic child. But it can be emotionally difficult to get to that point and even more difficult to get what you need from the system. But there is hope. It won’t be perfect, it won’t even be normal… but you aren’t alone. There are others of us out here with quiet voices.