Monday, March 30, 2009

It's all a spectrum

I know I keep saying this, but we are going through a sort of funny time in our household. Every day is a mix of good things and challenging things, of small decisions that mount up to feel big and exhausting, of falling behind amidst clutter and errands undone while feeling like we are making progress on the big important things.

Mostly it centers around Miss C. She has Asperger's Syndrome (or "AS" as a lot of people call it) which is is an autism spectrum disorder. It's quite common, and whether or not you know it, you probably know someone who has it. Most typically, it's apparent in extraordinarily intelligent people who have sort of awkward social skills. Think Bill Gates and Albert Einstein, and those computer/science/math nerdy guys you may have known in high school. There huge ranges and differences -- but one of the characteristic issues is difficulty with nonverbal communication. A counselor we know refers to it as "social deafness." All of the nonverbal cues we pick up intuitively during social interactions -- body language, tones of voice (ie, teasing joking versus mean joking) -- aren't apparent or easily understood by people with AS. Another AS characteristic is extreme sensory sensitivity -- being acutely affected by sounds, lights, smells, crowds, etc. On a plain sensory level, the world can be an overwhelming place to someone with AS.

So. Remember 7th grade? And how the social landscape of school suddenly changed? For girls, there is puberty, and body-awareness, and self-consciousness, and new crushes on boys, and trying to fit in, and noticing that some people are popular and others aren't... It's a minefield. And that doesn't even factor in geometry and history and writing essays.

All things considered, C is doing great. She's doing well in school academically. She has some good friends who mean a lot to her. She's incredibly creative, and she has an extremely strong sense of herself. She doesn't worry about fitting in, even though NOT fitting in can make life fairly stressful.

The upshot of all of this is that as R and I try to figure out how to help her stay on an even keel, we're learning to look at the world in a different way. For us "neurotypical brain" types, it's not easy to see the world from an AS point of view ... but we're learning. And because we're understanding more all of the time, we find ourselves realizing that the cookie-cutter, follow-the-mainstream routes may not be the best for Miss C.

Last week, we had the huge realization that there is no reason that C has to finish the school year in her current setting if it feels to us like it's not working. I know, DUH, you think. We'd arrived at the decision that we needed to change her school situation for next year. But in the middle of the night one night last week, as R and I lay side by side in bed staring at the ceiling and worrying outloud about C's migraines and her increasing misery about school, it hit us: we can take her out of there right now if we conclude that that's what would be best for her.

So I've been doing pretty constant research into educational alternatives. And you know? There are amazing options. We're thinking "outside of the classroom box" these days -- so I've been learning about homeschooling and distance learning and working with tutors and a host of different options that could lessen C's stress and improve her happiness and get her back to actually enjoying learning. It's been scary to allow ourselves to even think of wandering off of the well-charted paths (to use yet another cliche) but it's a source of huge relief. And we've come up with some really, really terrific options.

I tell you, parenthood is just one amazing process of education and humbling awareness.

It's no wonder that I'm behind on my projects, the clutter is piling up around the house, the yard looks like it hasn't had any loving care in months ... but the three of us are feeling like we've gotten a handle on a pretty big problem. We have options, and we have plans in place if we need them. We're all feeling a lot better.

Oh, by the way, if you want to learn a bit more about Asperger's from the perspective of an adult with AS who explains how the world feels to her, check out this blog, Asperger Journeys. For all of the books and articles I've read, this brings home to me most clearly what AS feels like from the inside.


  1. Thank you so much for sharing this. I am sure it will help a lot of others who are in similar situations.
    It will also increase awareness and understanding for those who are not dealing with this directly.

  2. We really must talk!!!

    I'm so happy you're looking into alternatives--you two are fabulous parents. C is so lucky to have you.

  3. We are pretty convinced (as is my daughter) that her husband has AS, and knowing that has made my time around him easier. Knowledge is power Diane!

  4. Oh, this is good. i think you will find a wonderful way for C to be in the world and feel that it is her world.

  5. Isn't it astounding (and somewhat pathetic) how little the traditional school route has changed in the last 75 years? And equally astounding (and somewhat wonderful) how each person is completely unique in his or her own strengths, challenges, gifts and talents? Thank you so much for sharing your journey.

  6. Looking back, I often wish we had home schooled our middle daughter. She struggled so much to fit into main stream academia, and I think it, and we, failed her. Fortunetly, she is doing great now, married, employed and most importantly, happy and comfortable with herself. I totally support you with these difficult decisions. We are never sure we are doing the right thing are we?

  7. Diane -
    I homeschooled my boys for three years, and I know it was a huge boost for them in many ways. You know your child best, and what she needs right now. That may be different next year, in five years, but only you can make that decision.

    Please reach out if you have homeschooling questions! Good luck and hope C's migraines disappear soon!

  8. You have "Miss C"...I have "Miss B", also an 'Aspie'. we didn't get any diagnosis until Bekah was 15. We say "change is bad - don't change your socks!" around here, and even Bekah laughs. Bekah's now a senior in HS, and it's still a challenge. Homeschooling worked well for us for 4 years, though she's back in public school now.

    Thanks for the link. I'll check it out and have Bekah check it too.

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