Thursday, April 30, 2009

My Boy

I know people mean well. But my son is not autistic.

He has autism. There are plenty of parents who refer to their own child as autistic, and so you are free to do that too. But there are many more parents who shudder every time you say that about their child. I'm one of those parents.

I have this little boy. My little boy. He is funny, a great singer, has perfect rhythm, a smile that covers his whole face, he's got amazing recall of song lyrics, he loves wind chimes and swimming and lights, and saying prayers that are only about what he is grateful for, he does this dance we call the elbow dance that is hilarious, he adores the rain and snow, he's the only person I know that looks good in every single colour. And he has autism.

What if your child has cancer? After you leave a room, do people lean over to their neighbours and explain, "He's cancerous.", to which the response is a collective "Ooooh.", as though the child's entire being has just been explained? My boy is a lot of things, but HE is not a condition or disease. That is not who he is. That is not all he is.

You may think I'm nit picky or too PC, but I'm his Mom. I carried him for 9 months, gave birth to him, have loved him every moment since, and always will. I also had a mourning period where I lost the little boy I thought I'd had. I have worked, researching and trying to find anything to help him. I have celebrated every little bit of progress he has made. I have cried knowing there will be people who will never see him the way they should. I have taken the brunt of most of his "bad days". His bad days are not like your typical kids' bad days. We're talking sometimes hours of screaming, throwing things, hitting himself or others, my own nose has been bloodied more than once...

I'm not trying to get sympathy. I have a child who I know is perfect in all the ways that matter. I'm trying to tell you that I (and other parents of special needs kids) have earned the right to decide how you will refer to my child. At least in front of me. Listen to how parents describe or refer to their child and then follow their lead.

No person is any one adjective. My boy certainly isn't. He HAS autism. And little feet. And a sudden appetite for animal crackers. And the best cowlicks that give him the coolest hair. And an infectious laugh...

Have you seen my boy? Have you seen the angels around him? They see Noah. Really see Noah. A perfect being that's here to teach us a thing or two about what we lack, what we need to learn. That's who he is.