colorspectrum

Dave (my husband) is English and graduated from Oxford University with a degree in biology. It's a pretty major thing to get recommended for Oxford, and Dave's math teacher, an alumnus, recommended him. Not because he thought Dave was excellent at math. “You get it wrong a lot,” he told Dave about his class work, “but you get it wrong in an interesting way.” He thought Dave had a unique brain and that Oxford could use more of those.

I think about this story sometimes when I watch Billy. A unique brain. Not less, just different.

I didn't always feel this way. When we first got the autism diagnosis, I was scared and angry and all I wanted to do was “cure” my son. I thought it was my duty to find some magic bullet that would wipe the autism right out of his system. And we went through a lot of them, as you can read in this blog.

But as an autistic scientist named Lisa Daxer said in a wonderful article I read this week, autism is a fundamental part of who my son is; it's a way of describing the way his unique brain works.

The wonderful thing about this past long, hard, rewarding, exhausting, surprising summer is the close bond I've formed with both my children. With Billy, it was an invaluable opportunity to really get to know my little mystery, as he sometimes seems to me.

My focus has shifted from trying to cure my son to trying to support him, encourage his learning, and nurture those sparks of interest and passion I see in his eyes. In that way, my job is no different than that of the parent of a normally developing child. Of course, some of our supports will include some speech therapy and occupational therapy and extra assistance with social skills.

But we no longer expect to spend every waking moment in therapy. As Lisa Jo Rudy describes so well in her book Get Out, Explore and Have Fun!, our support of our son also includes taking him to the museum and the park, encouraging his interest in music and getting him lessons in gymnastics (which we hope to start soon) and swimming.

I'm not saying that it's not hard sometimes. Clearly, Billy has communication problems, and life is always going to be difficult for someone who has difficulty communicating what they're thinking. (But he'll be in good company with most men on the planet in that respect.)

Billy has difficulty responding to or asking questions. He confuses pronouns. But he can remember verbatim a story or TV show he hasn't seen for months. He easily picks up phrases in any number of languages; he can now count and say the alphabet in Spanish, French, German, Japanese and Hebrew.

Socially, he's about a year and a half behind his peers. He's learning how to share, greet people, join a game. That may always be a challenge, on some level, for him.

But he's loving and funny and charming. He's just as devoted to his family and friends -- and even almost-strangers (like the school crossing guard) who might not realize their impact on him – as any normally developing child.

And he's happy. We all are. We're not just surviving; we're thriving. Some days we're happier than others – but then again, so are most families. Happiness is a spectrum, just like autism. So is intelligence. So is fulfillment. And acceptance and understanding. "Normal” is most definitely a spectrum.

We're a long way from Billy attending Oxford, but we are approaching the end of his first of week of Pre-Kindergarten at Buck Lake Elementary. It's been a great start to an important year for us. We'll be watching his development and behavior – and the classroom dynamic -- closely to determine whether another year in the public school system makes sense – or if we should start pursuing other options. So far, we're cautiously optimistic that there's a place for Billy's unique brain in the Leon County School system.

A unique brain. Maybe that's what the world needs – or will need – to solve big problems like cancer and AIDS and world hunger and global warming. Maybe hard work and intelligence alone won't be enough. It'll maybe take someone who can see patterns and make connections that a “normal” brain would never make.

I'm not saying that autistic people are going to cure cancer. Or that the only valuable autistic people are those savants who bring some super-skill to the table. All people are valuable. We are each truly unique and special. And we are all on a spectrum.

Reader Comments

Life is a Spectrum

So wonderfully written Amanda. And I so relate to everything you said here. I don't want to cure him, just want to help him be as functional as possible in the world, and to nurture his strengths and work on his challenges. This could be a big year for both our kids, as they are trying to find their way with peers, and learning new skills. It's been quite a year for Milo, as I am sure it has been for Billy... and they do have unique brains and we can cherish this in our boys. I liked you sharing about the languages... Milo can count in Spanish and say some words in Spanish, but not other languages.. that is great. Milo is quite the whizz at Maths, (addition, some subtractions and learning multiplication) he can read and write already. It's amazing how the brain is advanced in some areas. Milo also loves music. Billy sounds quite the character.

normal is also subjective!

as usual, love watching your mind work to reach beautiful conclusions. I think you have a unique brain too!

Life is a spectrum

Thanks *so* much, guys.

Sarah, I really look forward to hearing how Milo -- AND his parents -- are doing this year :-) I feel so blessed that I have so many wonderful new friends among the autism parents out there on the Internet. Comparing our stories and the similarities/differences in our special little guys' (and gals') minds, is a source of constant fascination to me.

Life is a Spectrum

I share this perspective with you, but unfortunately not everyone in my household does. I feel that I've come to terms and reached a level of acceptance for Audrey just as she is...which as far as I'm concerned is a nearly perfect joy in every way...but it sucks big time when your partner still wants to fix fix fix. I hope that he'll get to where I am someday.

so insightful

I have recently discovered your blog and absolutely cherish the insights you share. My little guy is 2 1/2 and the experts are pretty sure he is on the spectrum. (We're working with First Words in Tallahassee). I've avoided reading much about ASD because it always makes me cry. But when I read your blog, it puts everything in such amazing perspective. I appreciate your positive take on your experiences with Billy and the gifts he has. I'm still working through that wanting-to-cure-it phase. I'm striving to work towards just enhancing the gifts Mikey has, which are abundant, rather than just seeing the deficits. Thank you for the gift of this blog!

Life is a spectrum

It's such a joy to be able to connect with other parents -- particularly other parents of ASD kids -- and hear your stories, share your joys and sorrows, and support each other. I meant it when I said that "acceptance" is a spectrum too.

I will say this: I'm happier now that I don't see autism as the enemy. But I wasn't able to get past that without the confidence that develops with the simple passage of time. Over time with a child on the spectrum, you become impossible to embarrass, you finely hone your "Mama bear" skills, and you just learn a lot more about what's out there, what's available, what works, what doesn't.

Thank you for reading and sharing and being that virtual support that helps me laugh my way through the week :-)

Total 6 comments

Security - Please re-type the following letters and numbers.

43T69M

The Broadfootsteps of one autistic preschooler, one toddler and the parents who are running to keep up ...

Buttons

...or grab my button!

Lifeisaspectrum.com button

BUY THIS BOOK!
(Billy and I are in it.)

Tags

Mon Tue Wed Thu Fri Sat Sun
    1 2 3 4 5
6 7 8 9 10 11 12
13 14 15 16 17 18 19
20 21 22 23 24 25 26
27 28 29        
eZ Publish™ copyright © 1999-2012 eZ Systems AS