Tuesday, April 7, 2009


I have this long, introspective, self-indulgent, half-written-and-unlikely-to-ever-be-finished post in my queue. It's all about Autism Awareness Month (my friend Kristen's post is the best thing I've seen written on the subject, bar none, so that's where I'm sending you), and how the only thing that I'm aware of is how neither N nor I really fit in: How we're betwixt and between the world of the spectrum, which (from this side of the fence) looks and feels like an incredible community of men and women and their children, all unbelievably connected and supportive of one another and always THERE for each other...and the world of the neurotypical (or whatever you want to call it), which (from this side of the fence) looks and feels like...well, like the world where people don't spend half their days obsessing about IEPs and services and looking around trying to figure out what the problem is in the first place so they can fix it.

And then there's us...separated from the neurotypical gang on their side of the fence by social skills groups and speech therapy and whatever else is on the horizon, and yet separated from the special needs gang on their side of the fence by not having a name, a tag, a label, by not qualifying for help from the Regional Center (and thus unable to join in on the special events/classes/camps/nights out for spectrum kids that the nice parents from the social skills group keep inviting us to), possibly by being just neurotypical enough not to be special.

(And no, I have no idea how it is that I'm on neither side of the fence, and yet I'm talking about the view from my side of the fence. Don't bother me with logic right now. I'm wallowing!)

(And yes, I do perhaps see where my son gets his social-isolation issues from. I'm wallowing, but I'm not stupid.)

And then my little, quirky, can't-quite-label-him guy delivers an unintentional punch to my gut, and I realize that no matter where we actually are in this world of needs both special and mundane, no matter what we're calling what these differences are, we're almost there...there being the kind of awareness I've been afraid of for a long time. And I realize I don't really want to talk about that other stuff any more. I just want to tell you what he said, and how sad it made me. And so I'm telling you.

It started with an email from Baroy yesterday, while I was at work:
N just broke my heart. We're doing his homework, making sentences out of his vocabulary words, and we came to the word "many." N suggests, "I have many friends." Then he says to me, "I don't really have many friends. But I can use the sentence anyway, right?"

When I got home from work that evening, N asked me--as he always does--if I wanted him to read his homework to me. When he got to the sentence in question, he read, "I have many friends," and then, sotto voce, "Except really I don't."


Before I could say anything, Em stepped in, having overheard the exchange. "N!" she exclaimed. "That's not true. You have LOTS of friends!" And she began ticking off names. And although he corrected her on a number of them (she was being overzealous, listing the names of her friends, the older brothers and sisters of a number of his friends), he did end up grinning.

"See?" I said. "Em's right. Even if you don't count J and G and R, you still have lots of friends. MANY friends, even."

He admitted that maybe we were right. And yet, he knows he's right, too, our protests to the contrary. He knows that the playdates are few and far between, and seem fewer and further in comparison to his sister's nonstop social whirl. He knows that there's been not a single birthday party invitation from his class at school. He knows that he sometimes gets terrified and unable to cope when other kids are around...often even when they're other kids he likes. He knows how hard it all sometimes is for him. It's his life, after all, and he's living it. He knows. He's perfectly, heartbreakingly, aware.


Niksmom said...

This breaks my heart to read and to sense N's sadness and his awareness of being slightly different than others.

I understand that betwixt and between feeling more than it might seem. While Nik's definitely a "special needs" child, we don't have a foot in any one specific neighborhood. Because of his overlapping medical and developmental issues, we sort of flit from block to block depending on the moment. We simply decided where it felt right and took up residency.

mc said...

I'm so sorry...
My son is not aware of his delays and unique characteristics yet...
It's so hard to fall into that gray area, where there are special needs but no diagnosis. Help is so limited. At the moment I'm trying to coordinate extra funding for my son when he goes into Grade 1 (I'm in Canada), but it is so hard without a diagnosis.
Sending you a big hug,
A lurker mom.

Green said...

I had almost no friends growing up, though for different reasons. I'm blown away by how differently you approach and deal with that than my parents did.