Tuesday, October 20, 2009

to label or not to label

Earlier today, I joined a discussion of *unschooling special needs kids* over at the Radical Unschooling forum.

I think many people find homeschooling or unschooling because their child doesn't fit into society's box, but I'm not convinced that labeling is helpful for every child who doesn't fit into that box. It's really a very small box.

In my experience, once you go through the diagnostic process with your child, whether you're given a label or rule labels out, the questions only grow. If a label *fits* your child, then what do you do next? Do you try to fix your child, to make him normal? Which method, drug, or treatment plan will achieve the goal of normal? Or, do you embrace his differences and find ways to support who he is, moment by moment?

Sometimes parents ask if the labels -- medical or behavioral -- mean their child can't unschool. They are afraid to fully trust their child to learn without some kind of imposed structure. Sometimes they have several children and worry that the special needs child should be treated differently. Really, all children should be treated differently, uniquely, because each child is unique.

Even without labels, I find myself doing different things with each of my 3 kids, because they're very different people, and their needs from me vary. My needs in my relationship with them vary, and each situation calls for an individual response. I'm very aware that Will's Mama is not exactly the same as Andy's Mom or Dan's Mom -- but I do my best to be the best mom to each of our boys. Really, they don't need the same Mom. Each boy needs his Mom to be respond to him in the way that best supports him.

I agree that there can be times when a child's particular needs result in different responses to situations. Knowing my child will be who he is for much longer than the time he'll spend living in my home, I'm committed to finding ways he can get his needs met, so that when I'm not there to tell him what I think he needs to do, he'll be able to figure it out for himself.

In recent years, the numbers of kids with spectrum qualities has sky-rocketed. I think that is in large part due to a narrowing of the definition of *normal* for people. There have always been people who don't fit the average expectations for a population at large. Looking back into my own family, from stories I heard over the years, I can pick out the *odd* ones. The uncle who never married, and lived in a travel trailer in the family's backyard; the aunt who re-defined *eccentric cat lady* are only two.

If the online screening tests I've seen are any indication, I fall somewhere on the autism spectrum. The difference is that 40 years ago it was perfectly okay if a smart girl was shy, and read lots of books, and was a little different. Really, we're an odd bunch overall, so it should surprise me that medical science has now found a label for several of us? Not a bit!

Andy, our intense, sweet, generous, amazingly funny, and very unique son, has had some challenging times this year. I've heard -- and well remember -- that being 13 is like that. For me, it was the transitional nature of the teen years. I'm really no good at transitions. I fight change tooth and nail. I like things just. the. way. they. are, thankyouverymuch. Even when things are not easy, I like predictability. Andy's like that, too, so the seemingly never-ending change of the past year has been a bear. Not always our wondrous Andy-bear, more like a raging, hungry bear. It's been rough not just for Andy, but for those of us who love him, too.

Truth be told, the past several months have been challenging on so many levels for our family. Andy's just our second-most reliable bellwether, after me. That's because we're both just big empathic sponges, and incredibly intense. I'm just more experienced at managing the onslaught. It gets easier after 4 decades or so.

We recently considered having Andy diagnosed. I talked it over with him, asking whether he thought it would be helpful to have a label that might give us some new tools for coping. I was feeling very out of tools, and at a loss for how to help him with some issues. Some years ago, in talking about school and Will's time there, I had mentioned to Andy that the kind of different he is, they have names for. Andy knows he's not like most people, and having carried that around most of my life, I see no reason to avoid talking about differences. For us, they're just a part of life, of who we are.

Andy and I discussed the possibilities with his regular doctor. It was a difficult conversation, in part because we explored just how unhappy Andy has been, which had me in tears. It was helpful, tho, in that I heard things from Andy that he'd been keeping from me because he didn't want to add to my burden, or to Will's burden. He was willing to hack his way through the jungle alone, but it was just becoming too much.

We got a referral, thought about it for a few more days, called to set up an appointment, and never heard back from the doc. In the meantime, there were more conversations, where I found out more of what was going on inside his thoughts and heart. This lead to brainstorming solutions. I think it also helped relieve Andy's feelings that he's alone in this. A common thread for Andy is he worries that if he asks me for help, he'll never figure out how to solve problems on his own, so he tries to get by without help.

Along the way, I looked more into myself and gained some insights -- some easy to follow, some less easy to explore and sit with. With those insights and a move to find strategies to help me be more present, more aware of our needs, solutions have come to light.

Today I'm feeling it's good we didn't get to actually talk to the referral doc. We've found new tools and insights on our own, and I'm confident that, right now, a label wouldn't really add anything helpful to our life. Andy was really back and forth about seeing another doctor. He'd have gone, but I don't really think his heart was in it. He's not interested in having a label, but would have let us get one if we thought it would help us.

Labels just aren't what we want in our lives right now. They're not likely to bring us more joy, which is what we want in our life right now.