Tuesday, April 15, 2008

One foot here, one foot there

There's a gigantic amusement park about 3 hours from here, called Carowinds. It's been there for as long as I remember. I went to it as a child, and have even taken Band groups there since I began teaching---both to perform and just to have fun, ride on roller coasters and eat outrageously-priced food.

One of the neat features about this park is that it is situated exactly on the border between North and South Carolina. Literally, the border runs down the center of the park, and it's marked so that there are places in which you can stand truly in 2 states at once. It's cool, used to be one of my favorite (geeky) things to do when I went there as a kid. Put your feet on either side of the line, and then one foot's in SC and one's in NC. :)

Well, as I drive my 30-minute commute (each way), I've got lots of time to sing, listen to talk radio, or just to think. This morning was a thinking morning, and I was reminded of this "standing in 2 states" phenomenon. I feel like I'm doing that a good bit of the time in my own life now. My two states are the ASD world and the NT (neurotypical, non-ASD) world. And I try valiantly to stay grounded in both, but it's hard.

I'm not at all wishing that little E had ASD, don't get me wrong. But I do think it's tough for parents who have at least one NT child along with their ASD child, because you've somehow got to be fair to both, do justice to both. I want A to be happy, reach his full potential, and do everything that he needs to do to make that happen. The same is true for E, but what it takes to get there may be dramatically different.

Lately, though, I feel like 98% of my body weight is on the foot that touches the NT side of things, and that I just barely have a toe touching the ground on the ASD side. Is that ok? What else does A need that I'm not doing? Am I acting as if I'm ashamed, or want to keep the ASD a secret? Maybe.

Both boys are playing absolutely-100% NT T-ball, for example. There are plenty of local special-needs sports options, like the Miracle League, etc. A parent of one of Andrew's social skills group buddies is really into that league, and pushes it on me every chance she gets. And I'm nice, I listen, when I really just want to tell her to shut up and drop it.

A is in a totally mainstream 1st grade class too. Few people at the school even know what the official diagnosis is...we're just playing along as NT, hoping secretly that he can slide by that way. He's the "quirky kid" right? The "unusual but very smart and endearing" kid, at least for now.

And E is Mr. Social, talks to everyone and wants to do everything, go everywhere. So, we try to.....try to pass ourselves off as the typical family, doing typical-kid things like T-ball, birthday parties, etc. I'm leaning, leaning, leaning onto that NT foot, feeling like the ASD foot is barely touching the ground sometimes.

If I look deeply, I think I see that the truth is this: I want to be only in that NT world. I really believe that I've accepted the truth of A's diagnosis, he IS on the autism spectrum and that's not going to change. But in daily life, I stay in the NT world and don't embrace my position as an ASD mom. I don't really socialize with local "autism people", don't do the special needs sports, don't send my son to an ASD summer camp, etc. He's going to church camp instead. Isn't this a form of denial?

A cyber-friend who lives near here asked me if we're doing this weekend's Walk for Autism. I was embarrassed to admit that I hadn't even known it was this weekend; that's how out of touch with the local ASD "scene" I am. And then I'm faced with a dilemma......Walk for Autism, or T ball game? I chose T ball game. They're at basically the same time, and we couldn't do both. And, to compound things, A really has no awareness of the ASD, at least that I know of. He's never asked THE question about how he's different from the other kids at school, and doesn't know what autism is. Last year, we did a March for Babies for the March of Dimes. Both boys knew what it was for and why it was important for us to walk and raise money. How would I explain this? I'm not ready, don't know what I'd say and don't really think I want to have to say anything. Can you say denial again?

I'm thankful to have a great group of online friends who are ASD moms, and I feel comfortable talking to them about autism "stuff".....but that's really the only place that I exist in the ASD world. I've got at least one toe firmly on the ground of Autism Island with my friends there, but that's the only place. I just can't stop arguing with myself, though.........

*He doesn't need special sports leagues? Or does he?
*He's doing ok in school, socially, right? Or am I just blissfully unaware?
*How long can I keep putting him into typical-kid situations without even really telling anyone that we're fakers?


tafkalorelei said...

Just wanted to send my ((((hugs)))).

Jen said...

You could never be fake, Jen. It sounds like you've got your finger on the pulse of both your boys. Isn't parenting about achieving a balance anyway.

I love denial. It is my friend especially when it comes to my girls. Hugs from a fellow denial diva. - Jen

Heather said...

You don't sound like you're in denial at all; you sound like you're doing the best you can for your boys and that's all any of us can hope to do. (((Jen))).

lyndsey said...

(((((hugs))))) I feel ya, only for the opposite reason. My toe is just barely touching NT world.;) I know it is rough, but I agree with Heather-- I don't think you sound like you're in denial. Andrew is doing incredibly well, and if he can function in certain normal settings, then by all means, I think he deserves as much NT as he can handle.(((hugs)))