We Go On Living

As you read in my last post, we've been really ill around here -- just emerging this week from virus' and Adam's swimmer's ear, the latter which brought about pain and a high fever.

Other than that, I feel a little removed from autism these days. Camp is so wonderful -- a "regular" camp where Adam attends with a shadow -- something I believe all families should be entitled to have and am considering raising funds for. We are all relaxed and Adam is talking a whole lot more. I look forward to his school this September, where he was so happy -- the atmosphere so quiet and suitable to him. It feels so strangely in place these days and I said to Henry last night:

"There was a day when Adam was first diagnosed that I worried all the time -- when I worried about his not talking and such. When he was first diagnosed, it was hard for the first year not to think about what he would be like without autism, for that's what the world would have you believe is possible. Today, I don't care. I don't think twice about it, except when I make a point of it on my blog. I accept Adam for who he is and I like who he is as an autistic person. He is the best boy in the world and I wouldn't change a thing."

Yes, our kids get ill. Yes, Adam can be anxious. Yes, we have to modify some things. But it's the world as we know it and we have gotten to the point where we don't think about it as much any more.

I am booking Adam's fall music and sports programs now, and we are welcome with open arms. I like to commend all the people we meet who have accepted us and who are so flexible in order to let Adam be part of the life to which he is entitled.

So I guess it's why I'm not responding so much to all the Google Alerts I get on autism. All the new news about the cause of autism du jour. It's like we've finally gotten to the point where we float about all that hoopla and nonsense and go on with living.

Maybe it's just summer.

Middle-Aged Scare

It was last Saturday, a balmy hundred degrees along South Carolina's flat beach that I felt it come on -- an ache every time I tried to take a deep breath.

"It must be the massage I had," I said to my friends. "I think I had Helga's hands." I attempted to take in another breath against the thunderous sound of the ocean.

By Monday when I returned home, breathing became more difficult. That night I couldn't sleep on either side, my lungs aching. By morning, I was in the hospital. I thought it was pneumonia, but I wasn't coughing like the last time I had it. My x-rays came up normal.

I looked at my husband and gasped. If it wasn't pneumonia, then what was it?

"You need a CAT scan for a blood clot," said the emergency room doctor.

I began to weep when he closed the curtain. I could tell Henry was worried. He usually tries to be very calm, but he began to do that deep breathing when people try to brace themselves. I suddenly began to ream off where everything was, and what he needed to know about Adam.

Everything was about Adam -- what I wanted for him, who, I thought, he could trust. I discussed everything right up into Adam's adulthood. Faced with uncertainty, it was the first time I urgently articulated the general "plan" I had for Adam's future. Every parent thinks about the future. Even for all the plans and worries, life will still deliver the unexpected.

"I'll be watching," I said to Henry, half-laughing, tears streaming down my face and slightly insistent that if he screwed up, I would deliver some kind of punitive lightening bolt. He accepted it today. He accepted my over-protectiveness when it comes to Adam, faced with a new uncertainty. Behind the curtain of my emergency room niche, the lights turned off because I had a migraine, he may have even laughed a little behind the sighs and the stroking of my arm punctured with an intravenous needled put in such a painful spot that I could barely move my arm.

A few minutes later, I was able to gather myself. Blood clots can be controlled with medications. I could stop flying for a while. "Be brave" I thought to myself. "One's life can also be measured by how gracefully we leave."

I sucked in my last worried breath and laid back awaiting my CAT scan. Adam would be fine. He has a large family of four half brothers and sisters, and a whole pile of cousins. Henry would stay home for a while if anything happened to me. Life will go on.

Besides which, I began to say to Henry, "I plan on being around until I'm ninety-five." I laughed at the ridiculousness of planning my own life-span, at how everything is so out of our control.

Whatever I plan, it'll all be okay. I didn't have the blood clot, but the mystery illness zapped a week's worth of energy. Adam now has a fever as well and my weak body is helping him get through it now.

We can't help thinking about tomorrow, but we try very hard to live for today. And while we are not that well this week, maybe next we'll be mightier.

Autistic Planet

***** (five stars)

Autistic Planet is a children's book written by Jennifer Elder, book publisher and mother and wife of Paul Collin's author of Not Even Wrong: Adventures In Autism. Not only did I love Paul's book (I have been quoting from it for the past four-and-a- half years), but I am raving about Jennifer's. When have I been able to sit down with a book that REALLY captured Adam's attention, particularly at this part:


"We don't do something one time, when...
...We can do it over and over again!"

and this part:

"Our love of music is so strong
That when we hear a great new song
We memorize each word we hear
Go home and play it back by ear."

and this part, Adam's eyes brightening:

"There's nothing hot in 'aut' cuisine
Lumpy, gooey, brown or green,
The only food to pass our lips
Are popcorn and potato chips."

Yes that one really caught Adam's attention. I can't recall if that one topped the bit on watching the weather reports.

I will take this book to Adam's camp and Adam's school. I will buy copies for his teachers if I have to and highly recommend that every teacher reads it in class. The book is lovely and affirming -- not your typical kids book about accepting that "poor" disabled kid they see in their school, or some that even proclaim acceptance entangled with raising money for a cure (thereby implying that autism is a bad thing). No, this one makes you want to live on the autistic planet for,

"...at the end of every day,
We flap our wings and fly away."

When do autistic kids get to read wonderful things about themselves that they can share with their peers to say how GREAT it is to be them -- to leave others perhaps even wanting to be them? Thanks to Jennifer, she made it happen and as a parent, I am grateful for her book. Every night, Adam and I will read Autistic Planet and talk about how great his world is, and how lucky we both are.

Everyone is welcome on "Autistic Planet" and if you haven't paid a visit yet, I highly recommend you do.

Between Interuptions

This is the anthology I participated in. You can order it here. My excerpt is "The Perfect Child." What is perfection if not in the eyes of the beholder?

We are all imperfect despite our perfection.

Summer Adventures with Autism

Summer turns out to be the busiest of months. Adam is at a "regular" day camp with his shadow and is beginning to do his "I've got this place under my thumb" strut. He goes on the bus, I pick him up at 3 -- it's a long day for my little guy. He has taught himself to swim under water (gulp -- I watch him like a hawk of course), and is learning to jump off higher and higher ledges (another gulp -- my guy who never climbed and had troubles with jumping is now leaping from higher bounds). He is growing, he is losing his cherub cheeks...he is becoming a little boy.

Sigh.

Henry and I were interviewed for a magazine yesterday (will post when ready). The interviewer was astonished when I said spontaneously in the context of discussing disability and autism, "Adam has taught me how to live." He is showing me vistas I would have never seen without autism and I have come to a point where I can't imagine life any differently. Adam continues to teach me what it means to be human. He teaches me to expand and to know what supporting another person really means.

As we prepare to travel to Alaska -- I can't wait to see Adam's face -- and just enjoy our summer, I look forward to sharing more of our adventures. In the meantime, keep checking out the TAAProject website as we are receiving more essays and others are editing the content. Support groups are still running throughout the summer and keep your eyes out for our next lecture series.

The Right to be Disabled

Watch this from The Agenda, a TVO Program on genetic screening and disability and decide if your participation in autism genetics studies and sibling studies are helping autistics contribute to society as autistic people. Ask if our autism researchers are truly respectful of autism as a disability to be respected in the way Deafness and Downs Syndrome should be.

The CBC Quirks and Quarks interview that comes after the TVO one talks to Michelle Dawson and Laurent Mottron and publicized The Joy of Autism: Redefining Ability and Quality of Life that The Autism Acceptance Project put on last year.

VIEW VIDEO HERE