Saturday, June 8, 2013

So Close Yet So Far Away

China, all the way to New York, I can feel the distance, getting close... -- Tori Amos

A few years ago, back when Ethan was first diagnosed, a friend who was trying to be helpful connected me to another friend who had a child with PDD-NOS. We began to exchange emails. You know how email can be if you've never met a person. I'm not sure if she meant to, but much of what she wrote about her little boy came across in very "clinical" terms.

Have you tried a sensory diet? Her messages would say. We have him do a number of calming activities...use the sensory brush three times a day...breaks at school to help him organize himself.

He's on a strict gluten-free, casein-free diet. We've seen amazing results.

He's come so far in that he is barely distinguishable from his doing great in school.

After a little while, I realized I had to be honest. I wasn't annoyed at the way she talked about her son.

I was annoyed because her son was "too normal."

There's this weird set-up in Autism World. You have parents who want desperately to connect with someone who understands just what they're going through, and you have the vast spectrum of autism.

Of course every child is unique, and any two children with a similar diagnosis, whether it be autism or Down syndrome or cystic fibrosis or sickle cell anemia or a form of cancer, will have their own path to travel, their own special set of circumstances and challenges.

Yet with autism, that gulf between what any two children may experience seems so much wider.

Growing up, I saw one autism. I thought autism was hand flapping and head banging...refrigerator raiding and house-destroying. I thought autism meant no words. Then there was the day we headed out to Andy's residential school near Boston for the end of the year show. Some of the students were greeting people. Wait, they're talking, I remember thinking. They can talk?! And while their greetings were somewhat stilted and rehearsed, they were standing and knew how to interact on at least a basic level.

I'd never seen that before.

If someone had introduced me to Ethan when I was a teenager, I would have scoffed. HE has autism? I would have rolled my eyes. Let me show you autism.

There's this constant friction that exists, in these times when autistic persons are becoming increasingly vocal about their experiences, about acceptance, about their feelings that there is nothing wrong with them and that autism should be embraced rather than be "forced" out of people. It's almost impossible to make very many blanket statements about autism, because not only is there no one autism, but the distance between one autism and another can be so very great --

-- and, as a result, sometimes the space between parents of those with autism is too big to span.

Awhile back I began chatting with a mom of a boy who has what I'd call moderate bordering on more severe autism. We got together a few times with our kids. I really enjoyed talking with her. I loved watching the kids play, albeit in their own way. As we talked, though, I found myself uncomfortable answering some of her questions. It was obvious Ethan did not deal with some of the same issues her son faced. I realized I was trying to couch my answers...respond vaguely...not dwell on some of the things he was doing well. I didn't want to discourage her. Nevertheless, after a little bit this mom stopped answering my emails. We didn't get together again. She's swamped with her own life and responsibilities, but I wonder. I wonder if it had anything to do with how different our boys are.

And yet -- I stand on the other side. I am the one who sees the child with PDD-NOS, mainstreamed in a classroom without any supports, playing with friends easily, maybe getting a little upset over changes in routine, maybe acting a little big "quirky," -- I am the one who will still stand there, if I'm honest with myself, and silently wonder, silently judge. A part of me will think that this child wouldn't even have had a diagnosis 25 years ago, and the walls will go up.

This bothers me. It bothers me that the nature of autism is that we can be so close, but so distant, that our kids could be so close in diagnosis but so different.

The urge to compare is human nature: but when we do that, as parents of children on the spectrum, we are ultimately hurting ourselves.

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