Saturday, August 20, 2005

What do you say?

In a recent post, Tamar recounts a visit to the playground during which she encountered a little boy and his father. The father explained that his son was speech delayed, but did not indicate - indeed, did not even seem to know - that his son was, for lack of a better phrase, from France.

Tamar asks a question, startling in it's simplicity because it masks so many levels of complexity: "How do you tell a stranger that his son is autistic?"

Of course, the question begets so many other questions: Should you tell him? Is it any of your business? Who are you to make a diagnosis? What are the implications for this child if his parent continues to live in ignorance or (worse?) denial? Do we-who-have-been-there have an obligation to connect with others who we know (in the way that only we-who-have-been-there know) will share our journey? Do we have any right to drag someone into a journey for which they may not be ready? Tamar asks for feedback, for future reference, for this boy and for the others (because there will be others) who follow. She asks:

If you're reading this and you too are a parent of a spectrum kid and if someone came up to you in the park pre-diagnosis and said "Get your kid checked out, he [or she] is in trouble," how would you have responded?

Her question took me back about four years. When Bud was just under two we took a Kindermusik class. It was the first time I saw him around children his own age, and the developmental difference was striking. While the other kids sat and listened to stories, participated in simple hand-movement song games, and played instruments appropriately, Bud spent his time running, flicking on and off the lights, throwing instruments, and melting down.

After one particularly difficult class, another mom said to me "I give you credit that you keep coming," which rightly or wrongly I took to mean "Your child is disrupting the experience for the rest of us." So I lingered while everyone else packed up, and I caught the class instructor one-on-one. She'd worked with a lot of young kids and she had a degree in early childhood education; I wanted her take on what was going on, and whether or not we should withdraw from the class.

"I worked with a little boy who was a lot like Bud at the last daycare I was at," she said. "Obviously, similar behavior can mean really different things, but that little boy had a diagnosis of PDD-NOS." I think it was the first time I'd heard those letters, which are now so familiar they feel like my own initials.

I stammered out some sort of response, and I'm fairly certain she wondered if she'd said too much. "He's doing great now," she added with a smile. "In a regular classroom."

"Really?" I asked, secretly relieved that this was just a phase.

"Well, with an aide. But really much better."

"Oh."

I wonder if she replayed that conversation a thousand times, too. I wonder if she thought of a hundred other things she could have said to spare my feelings or to avoid overstepping her boundaries. But for as difficult as that moment was, I am incredibly thankful that she said what she said. Unlike her, I had never known another child like Bud. And to me, Bud was (and continues to be) perfect, so it probably would have taken me a lot longer to look into early intervention if she hadn't given me some letters to google.

So my vote, for Tamar, for myself, for any others who find themselves in the situation, is to say something. Say anything. Say it inarticulately if you must, and say it with care. "I see. I know. Me too. Bon jour."

6 comments:

Mom to Mr. Handsome said...

I totally agree with you that something should be said. I was at a gymnastics class with Gabe and he was everywhere. Someone I knew said that she knew another child like Gabe who ran around and didn't listen. "But," she went on, "He was Autistic". That comment saved my son. NBC ran their series on Autism the next day. I knew Gabe was different and she gave me the beginning language to fight for my son. I am forever grateful to her.

Mom To Mr. Handsome

Octoberbabies said...

As the parent of an autistic child I can definitely relate to the desire to say something. But I remember how defensive I was when told my daughter might be "from France". I have no idea what I'd say in this case but I'd have to agree that the responsible thing is to say something, even if its just a little hint.

mama mia said...

I always say out straight to people who give me and my autist son a dirty look or said something about my parenting manner that my son is autistic, go and look it up. But my question to you is......your son can speak??? do tell me this.

Wendy said...

How funny is it that my mother first mentioned it to me when DJ was around 2? Three years we have a dx of Aspergers. But when he was 2 all I knew of autism was "The Boy Who Could Fly" and DJ didn't fit that criteria. Then we took a test on an autism site and he didn't fit the criteria either. Go figure!

Marta said...

I find your allusions to France very endearing :) Bogdan (our autistic son) has a sweatshirt that says "Welcome to the red planet!", and we allude to Mars a lot like you do to France :) At least France is on the same planet (and much closer to us, as we are in Germany now)!

Anonymous said...

Its not what you say..its how you say it! I was in a gym class and the lady_owner came to me telling me my son : * do this with his hands(*stimming.)

My son has visual stimming NO hand or rocking stimming and I look at her and told her he does not stimms with his hand and I am very aware of what my son has. then she says to me: he is over stimulated it! maybe too much noice too many people?.. My son has not problem with noise and people if anything he loves it!.. Never came back to that Gym. She was just lying on my face to tell me she knows my son was under the spectrum infront everyone on the floor (instead of her office) I was looking at my child and he is so atlethic and he did everything perfect , he has great motor skills but he do not like to sit and sing in circle he wants to keep moving to the next item and play(no patience!) .. just be careful how you approach people about ASD it seems now everybody is a doctor!