Monday, April 2, 2012

My 1 in 88

Jacob, March 2012
Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.

I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.

But I could not let today pass silently, without notice on my blog. It's just too important.

Last year I wrote a pretty cool post about my son, Jacob: Every day is Autism Awareness Day 'round these parts and everything I said in there still stands.

Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.

And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.

I love Jacob with every fiber of my being.

But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.

I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.

I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.

But I know how harsh and cruel the world can be for those who are noticeably different.

And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?

I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.

1 in 88 is a number, a statistic.

But my Jacob is not a number.

He is a person.

A boy.

My boy.

This is the face of autism.

To me.

Jacob, March 2012


  1. Hey, a few lovely, natural photos of him... what a delightful treat!

  2. What great photos of him!

    That 1 in 88 number was surprising to me. And whether it sounds "nice" or not, I can totally understand your hope that at least society's attitudes toward and accommodation of autism will improve with rising numbers.

    I wish we could understand more about it.

  3. your words and your love of Jacob really brought the tears for me.
    I am very aware of the statistics and the fact that they are not just numbers, but children, that I know and care about. With moms and dads that I know and care about.

    It is going to change our world and our society, but I can only pray, for the BETTER.

    love the pictures of your Jaoob.

  4. It is no wonder that Jake's drawings are so emotionally expressive - he has the most expressive face I've ever seen. Really beautiful (as is your writing about him and his struggles AND his triumphs). I will say, though, that as I write this comment, the fraternal siege in my house has escalated and two boys are about to lose their weekend "screen time" for...the next year? Maybe two. I think that parents like you and kids like Jake are shifting how people think about and understand autisim and for that, I am profoundly grateful.

  5. This is great. The only way I can think of the numbers is by thinking of autism as human evolution. While this idea may terrify some, I find it oddly reassuring. But then, as my husband would say, I'm a bit odd for a NT!

  6. This is NOT an "All children do that" comment. I would NEVER say that to you or anyone else in your shoes. Just a possible solution for 2 fighting kids, NT or not.

    I am 3 years older than my brother and we shared a small room until I was 12. After that our grandmother gave up her larger bedroom for us. We did not get along at all as kids and fought all the time. Anyway, we ended up dividing the room the best we could with wood and cloth. We even split the doorway into the room in half with a few love beads. (Yes, it was the 60's). It was not perfect but it was a huge improvement and and as you we only had so many rooms. What a difference that pseudo partition made! We had very strict rules about staying on our side of the "wall" aka "the great divide". You had to be invited to go on the others side. The sibling that broke that rule was banished from the entire room for the rest of the day and slept on the couch that night. That only happened once for each of us in 6 years. You could bump the love beads on your side of the doorway but could not physically move them or the wall with your hands. That was another "out of the room violation". So was deliberately making too much noise and we only headphones were allowed for music. Oh, we also split(sawed)the bunk beds into 2 singles even though they were not designed for that. Not much room but we did not care and stopped whining for another house. The consequence for whining and complaining was to remove the wall permanently. That never happened. We followed the rules.

    PS- We both gave up the one closet to storage and just hung stuff up on a bar on our sides of the divider. Small price to pay for privacy.


I am so sorry to have to turn word verification back on, but the spam-bots have found me - yikes!