Sunday, April 6, 2008

The future's not ours to see (que sera, sera)

What will Ben be like in 5 years? 10 years? 20 years?

It’s a question every parent asks themselves now and again, but one that I actively avoid.

Around the time that Ben’s condition became an official, professionally validated thing, I remember a whirling, sick feeling as I was wondering, “What does this mean? Will he go to college? Will he be able to live on his own? Have a ‘normal’ job, Have a committed relationship?”

These thoughts are common for many parents in that post-diagnosis period. Whether the realization sinks in slowly over time or a professional passes swift judgment, there’s a turning point where you say, “Okay. It’s official.” Where suddenly you feel like you’ve awoken in a different world.

But I know now that it’s not a different world. It’s the exact same world, and your child is the exact same child he was before someone attached a label, and you love him just as much as you did yesterday.

So I snapped myself out of that whirling, sick feeling by deciding that I would not speculate on Ben’s long-term future, but concentrate on the here and now.

This is not, let me tell you, my strong suit. I am a black belt in worse-case scenario generation. I actually enjoy planning and forecasting to the extent that I think I should list it on Facebook as an interest.

But I’ve been able to let go, for the most part, of worrying about Ben’s future.

Until recently.

I watched this piece that aired on Nightline about going through adolescence with Asperger’s. The video features profiles of Daniel, a college student and Noah, a middle school student and their struggles and successes with surviving adolescence on the spectrum.

After I watched it, I could not stop thinking about these two young men. I felt so drawn to both of them and was moved by how articulate and conversational they were – not what we’re generally led to expect of an individual on the autism spectrum. They struck me as kind and gentle souls – the type of people we need more of in the world.

But I also was immediately aware of those very subtle things that made them different.

Daniel and Noah are probably 80% similar to their peers and 20% different. But ratio might as well be flipped to 20/80 when it comes to how they are perceived in a world where conformity and perfection are expected.

I acknowledged – reluctantly - that I would probably pick out and focus on these differences, too, if I encountered an individual like them in the workplace, in a job interview, at a dinner party or other social gathering.

And I thought about the way I use to dread meetings with a programmer I worked with once (who now, in retrospect, I suspect has Asberger’s) because his constant, lengthy dives into unnecessary minutiae exhausted me and frustrated me. His inability to censor himself drove me crazy. I admit avoided him when I could.

And lately I’ve started wondering about Ben. Will people know, immediately, that there is something about him that does not conform? More importantly: will that limit him?

Or are the real limits really just my own perceptions and expectations for him?

The authors of two of the blogs that inspire me on a weekly basis, The Family Room and Good Fountain, each have posted on that same question, so there must be something in the air.

Here’s Susan of The Family Room:

When it comes to the whole "normal" thing, we've gotten a bit of a free pass up to this point. After all, a quirky four-year-old is cute. But an older child? An adult? That's an entirely different proposition. And so we are back to the eternal question of what is "quirkiness" (lovable eccentricity) versus "disorder" (off-putting). It's a value judgment, plain and simple.

Maybe with all of the mainstream media attention that autism is getting these days – autism now has its own day, after all, like Mothers and Flags - the world will be a gentler, more accepting place for Ben than it has been for Daniel and Noah. Maybe the world will be more able to embrace that quirkiness rather than seeing it as a disorder.

So at the moment, I’m still amused when Ben, for example, spins around in circles when he’s trying to listen intently as I describe the plan for the day. If he’s still doing that at 12, well, we’ll cross that bridge when we come to it.


Anonymous said...

I think we have matching black belts.

We do what we can to prepare them for the future, and we enjoy them now. Part of raising a child (any child) with a high self-esteem is that they experience, from us their parents, unconditional love and acceptance.

What we do today sets them up for the future. And I think Ben is off to a great start.

jaki said...

Oh wow. My mind went all over the place as I read your words, watched the video and checked out some of the other articles on the link. And it's nothing compared to where your mind must jump daily, hourly, event to event. You have such strength and such a deep quest to KNOW Ben, I just know he'll get THERE - his roads may be different and varied, but he'll use your strength and love and acceptance and be who he is "supposed" to be - Ben!

Anonymous said...

It is uncanny, reading your blog. My son Connor is a couple years ahead of Ben & it amazes me sometimes how your words are EXACTLY what I was feeling/going through a couple of years ago. But this entry is what I'm going through now & one of my major preoccupations as we are still working through the "official" diagnosis & what it means for school. That story on Nightline was incredible. Your words are always so powerful, I do hope you put your experiences into a book someday.

Sarah said...

I have always said that I will be content if Gabe (4 1/2 hyperlexic) is comfortable with himself and knows that he has a soft place to land- home. The world is not our friend, but then again, I wouldn't want to go back to those adolescent days either and I had no such diagnosis!!

Susan said...

Very well said! And if it's any consolation, I think we were separated at birth.

I do think (and maybe I'm just deluded)that we're going through a period of learning how to accept neuro differences, in much the same way as previous generations have had to grapple with other issues of diversity.

Anonymous said...

Regarding your black belt in worst-case scenario----"The apple doesn't fall far from the tree". Enough said. Love, Mom

Allison in Spain said...

Hi Christa,

It's been a long time since I wrote you, and went into your blog...maybe a year or more. Just wanted to let you know that although my son has lots of differences with yours (some skills above, some below), I am now completely convinced his diagnosis is Hyperlexia, even if I get no other professional here in Spain to agree to this....You seem to be happy and have accepted the A word. I still cringe, beause my son has only a few of these exasperating behaviours, and for now (he's 5), people outside us don't seem to notice anything weird. the school is not doing anything (hte psych. there has rejected him having any trouble, she says he's gifted and high IQ beacuse he learned to read by himself at 4 and half). So let's say, apart form the "having friends" issue, he seems pretty normal to most people, just smart. But we the parents are the ones having to deal with the inflexibility, the absurd rules he's invented by himself, and now the incoherent menaces he's directing towards us. I haven't had so much time to do reasearch as you, cuz I'm doing an MA in Publishing...but I would really like to get back in touch.

Christa said...

Hi Allison,
Thanks for your comment. Hope you see my reply.

I've come across some researchers who have put together some very compelling information that many gifted children exhibit some "spectrum-y" traits before the age of about 10 and are misdiagnosed with various conditions when they are really just developing differently because of their giftedness. Google Dr. Eide. I think the book is something like The Misdiagnosed Child.

But that doesn't mean the day-to-day challenges right now aren't real.

The real question is maybe not why or what is this but are you getting the support you need to help your son deal with the challenges he's having at home? (sounds like he's doing great at school). Are you seeing progress? What works?

Feel free to email me if you want to chat more!