Tuesday, June 13, 2017


I'd known her since she was a teen. She'd been referred for her 'rebellious nature.' Well no behaviour program in the world can ethically try to eliminate someone's nature. And when 'rebellion' is an appropriate developmental step, eliminating it simply stunts growth. I'd had all these thoughts in my mind when I want for my first meeting with mom. It took a lot of listening to a very frustrated mother. Her child was disobedient and moody, she was bucking authority and talking back. She missed her daughter the smiling happy child that loved her and listened to her. That child, a kid with Down Syndrome, had hit her teens and thrown every 'forever happy' stereotype, that's tucked behind that extra gene, in the garbage.

After she vented, I took a risk, I said, "I'm afraid your child's primary diagnosis is no longer Down Syndrome, she is now, and I'm sorry to say this, a teenager." She laughed and after a moment said, "Yeah this is what all my friends with teenagers are talking about, I just didn't expect," and here she stopped herself, "that my daughter would get there too." It was a moment of realization. So I did come, and we worked on coping strategies and teaching her daughter skills that teens need in order to be safe.

I tell you this because I ran into teen turned young woman a few days ago. She had bright pink hair and a nose ring. I almost didn't recognize her but when she stopped to look at me, recognizing me without remembering me, it all came flooding back. I called her name and said mine and she walked over laughing. She asked me why I was in a wheelchair now and then I told her that I loved her hair, it could not be more pink, it was the pinnacle of pink. She said, and I'm quoting here, "Yeah, fucking awesome isn't it?"

I was taken aback. Now before going further here's full disclosure, I am not surprised or startled when the f-bomb is dropped into a conversation. It is so frequent in conversation that it's punch has lost a bit of strength. But I was taken aback because I don't often hear people with intellectual disabilities, who aren't 'having behaviours' as people like to say, just use it calmly as part of a conversation.

She watched my reaction, smiling, then she said, "I'm an adult, I get to pick my words."

I agreed that she was.

Afterwards I thought that what she had said was interesting. "I get to pick my words." It's a statement of some power and complete autonomy. That's what free people do.


That's it.

That's what free people do.


Unknown said...

That's a good definition of freedom/personal autonomy!

ABEhrhardt said...

I'd give a fair amount of credit to the mom: it sounds as if she got it, and didn't keep her daughter from developing into her own adult.

It is hard to be a mother. As much as possible, you have to make your children independent of you. You can't guarantee you'll always be there for them.

And it hurts, because you are the safe target for their frustrations, the one who loves them anyway.

I've had kids with pink hair. How lovely.

ITV said...

Hi!!! I loved reading this. Nice and short, succint and now stuck in mind. My son is 14 and is a true and proper teenager.... he even uses te whole idea of the poor kid with Down Syndrome to tease me... And he says swear words. When he was born I really thought --as a stupid consolation when I felt depressed when I first found out he had DS-- that he would be docile and non-teen. I was so wrong. He is truly rebellious. Thank you for sharing this lovely article. Big hug from Chile in South America.

Baiterblog said...

My problem is that however well I hide my whisky, my son (with DS) a) always goes to bed later than me and b) is very good at finding where I hid it.