Thursday, November 21, 2013

The Special Needs Parents Code

What? You didn't know there was a code for special needs parents? A rule book of sorts to help us navigate this sometimes challenging life we have? Well, there is and the number one thing in that code is that special needs parents DO NOT EVER bash other special needs parents, and most especially not in front of a group of people who have not walked our paths.

I participated in a panel discussion last night for a group of university students and professionals whose field of study is neurodevelopmental disabilities. Besides myself, there were two other special needs families represented. One of the two was a parent of two children, elementary and middle school aged. She was accompanied by her fiance, and she identified herself as a stong special needs advocate. The second was a father of a young boy who had received an Autism diagnosis not terribly long ago. That father and his wife, of course, knew something was different (his words) with their son, but after a long while, they finally received the definitive diagnosis.

Each of us on the panel had been instructed to share some information about our family. I shared my story as did the mother and fiance, and the father went last. He was very emotional, the way most of us were and may still be, when it came to talking about his child. He and his wife had tried for almost 11 years to conceive a child, and finally were blessed with a son. He spoke of his pride, his joy, his realization of a dream. His eyes began to mist when he mentioned that his wife started to question the child's development at his first birthday. He spoke of the search for a doctor who would understand, who wouldn't dismiss their concerns and tell them their son just needed to catch up to his peers. He talked about finally finding a developmental pediatrician who put a label to all they had been experiencing. And then he said, "My boy is Autistic...My boy is Autistic."

It felt like an AA meeting. Since my former husband was an alcoholic, I had been to an AA meeting before with him. I could still picture people from the group standing before the others and saying, "Hello, my name is ????, and I am an alcoholic." The father on our panel had just reached the same place of acceptance, and it wasn't easy. But he was there and he was ready to move forward. There wasn't a dry eye in the room.

Then the parent of the two children, the self-proclaimed special needs advocate, spoke up and said, "We don't say our children are SOMETHING...we say they have SOMETHING. Your son HAS Autism, but he IS NOT Autistic. He IS (child's name) and he IS your son, but he HAS Autism."

Okay, I get that not everyone would see this as a big deal - HAS - IS - blah, blah, blah. I happen to agree with the mom but she should NOT, under any circumstances, have called out that father on his use of terminology. The father had reached a very important place in his acceptance of his son. To call him out on his terminology trivialized all that he was feeling and all that he was sharing with us, his peers and the professionals who may offer support to his family in the future.

So, yea, there is a code, and we all need to remember that. The father on the panel didn't say anything else during the session...

2 comments:

Molly said...

Nooooooooo. That's like, probably the worst thing that woman could have done. She effectively alienated that poor dad who was just getting to the point where he could even say the words "autistic" and "my son" in the same sentence. I happen to also use person first language, but if a dad with a new dx is going to say autistic, I'm going to hug him and hug him hard. and that's IT.

Argh. I would have said something to that man after the panel. Do you have his contact info?

This actually brought tears to my eyes.

Jeffrey Marler said...

Such good, clear, helpful, and merciful advice. Folks in clinical-research and advocacy positions often chose those fields because of a desire to be part of a positive change. But when we try to "teach" someone who we should really be listening to, our good intentions can be hurtful. We need to remember that we should be serving the families of children who learn differently, as well as the children themselves. Even though I've experienced this from both sides of the equation (as advocate and as a family with a differently-abled loved one), I'm still learning this lesson (http://goo.gl/5f146T). Thanks again!