Tuesday, June 18, 2013

Finding the right words

We walk together up to the school, Andy running circles (literally) around us. He is all grins and giggles, excited to be starting his drama camp, one of his favorite weeks of the year.

"Amputate! I know what amputate means!" he chimes cheerfully, my little human dictionary stimming on his newest favorite topic: word definitions. "To cut off! Rightmommy?" He tends to pick words that are uncomfortable and need extra processing.

"That's right!" I reply, half-automatic in my response, more interested in enjoying his ear-to-ear smile- the kind that have become increasingly rare, that light up his whole being and all the world all around him. "Can you think of a positive word for today?" I have been trying to encourage him to perseverate on words that won't make people around him uncomfortable, rather than trying to make him stop altogether.

"Negative words mean 'no'," he nods sagely, but the smile remains. "Is 'negative' a negative word, Mommy? Negative means 'no', rightmommy?"

"It is," I offer another affirmation. "How about 'exquisite'?" This was a favorite word a couple weeks ago, so I am hopeful he will pick it up, but he shakes his head.

"This is a blissful day, Mommy," he sighs happily, choosing another favorite positive word instead. "Bliss means, 'full of joy' rightmommy?"

"Just like you," I kiss his bright cheek, and we are in the door, Andy dancing in behind us.

Two minutes later, he is off to do his thing, with his friends. I can hear him as he heads down the hall, "I know what 'drab' means..."

That's my boy.

Monday, June 17, 2013

No Excuses

People love Joey. He's a sweet, loving, adorable child. He has a big smile and a big laugh and a way of letting you know the world is awesome. He wants to know you and accept you and love you.

Joey is also eleven years old, over five feet tall, and about 200 pounds. He's a big kid, about to hit puberty, big-time. His emotional and social development is as splintered as so many of his other skill sets- advanced, delayed, and everything in-between. The world holds a lot of frustrations for my little man, and self-regulation can be problematic.

Reading about caregivers who murder their autistic children is not only terrifying, depressing, and frustrating, it is horrifying to see how many people believe that such murders are justified. Lack of services, lack of support, the child was getting big, aggressive, unmanageable... people, these are not good reasons to murder someone.Would it be acceptable if the victim of the murder was not disabled? NO. And believe me, lots of teenagers can seen big, aggressive, and unmanageable, without being autistic. Somehow, when the victim is disabled, is autistic, all the sudden the caregiver becomes the victim, and victim becomes... what? The aggressor?

Yes, the aggressor. That is what we can conclude by the "poor caregiver!" attitude prevalent in these news items: the person murdered brought it on themselves, by being big and "unmanageable" and needing care and services. They get swept aside as a sort of sacrifice to our society's greed and cold capitalism. After all, people with disabilities are often seen as a drain on society, needing support and services and hey those things cost money and poor caregivers...

Yes, we need to fix the services, and make it easier to get services. But we shouldn't be murdering children to prove that point. No one should have to be some kind of sacrificial lamb, dismissed as a blood offering to... who? Our poor, poor taxpayers?

Joey is getting big. He's getting increasingly frustrated. Teen angst isn't going to help. He's come at me before. He's likely to come at me again. I'll probably have some bruises before we get through these next few years. Who will be to blame for those bruises?

I am the adult here. No blame, no shame. Just do what is needful, as best I can.

There is no excuse for murdering a person over "lack of services." Being a teenager is not an excuse to murder a person. Being poor is no excuse to murder a person. When we claim these are justifications for murder, we are denying the personhood of a human being. There is no excuse for that.

No matter how big, frustrated, hormone-fueled, and yes, even aggressive Joey may get, he is still my baby, my son, my love and my joy. I am his Mom, and would gladly give up my own life to give him every possible minute he can have. His life is his, not mine.

His life is worth living.

No excuse would ever change that.