JOHN IS RUNNING

AUTISM SOCIETY OF AMERICA

2010 New York City Marathon

New York, New York

JOHN IS RUNNING

Hey.

In a somewhat unexpected series of events, I am running the ING New York Marathon on November 7th this year. 

Up until the end of last year I hadn't run for anything much more than the bus since school. Then my frankly awesome cousin Sarah somehow persuaded me to stumble 10k round Finsbury Park in the pouring rain last October, which was more fun than I thought it would be. Sometime after that, she also persuaded me to sign up for New York with her. I don't really remember doing it. I'm sure I'd already discounted it on the grounds that the open ballot is hugely oversubscribed by around 4 to 1 (the London marathon ballot is around 5 to 1). Not odds I'd push all my chips in with. So I had almost forgotten all about it until an email in early April from the New York Road Runners saying 'accepted'. Unfortunately, Sarah didn't get in, so our plan of running it together isn't gonna happen. Maybe someday. 

It's taken a while to sink in. Most of you know that I'm not spectacularly athletic; not everyone knows that this has always been something I've quite fancied doing. I like the novelty of the challenge, and I like the idea of doing this before the bones get too creaky. So… f**k it, I'm in. 

Literally on the same day as I got the email saying I was accepted, I got another email from two friends of mine who live near Flagstaff in Arizona. After an awful, terrifying year, their eldest daughter, age 3, had finally been diagnosed with autism. With their permission, this is what I was sent:

"Ever since I got pregnant a year ago last January (when she was 18 months) she'd been getting quieter and quieter with less and less eye contact, less and less active play. We kept thinking it was my tough pregnancy affecting her and that everything would be fine once the baby came, but by the time M was born, Lu had started doing some really bizarre and alarming things. Not just tantrums, but real meltdowns where I could see no cause and she was unreachable, inconsolable. And the spinning. And arm flapping. And once the baby came she started hitting. The baby, herself, me, Stew. Sometimes biting. Hardly eating. Barely sleeping. I started to think of the olden days when they would say a child was possessed by an evil spirit. Maybe the child was autistic. She still had her good days, her loving moments, but by October we were pretty sure something was quite wrong. But I didn't know what to do, who to tell. And I had so much guilt. Plenty of other mothers have 3, 4, 5 kids. Why couldn't I handle my 2? 

Anyway, finding out about all of this has at least allowed us to talk to other parents and professionals, commiserate, get info and finally get Lu the help she needs. 

My biggest fear after we found out it was autism was this dark, looming, nonverbal, totally dependent future for her. But thanks to the amazing break throughs of last week, I no longer think there's even a chance. This ABA therapy is incredible. At first I kind of hated it. It seemed like they were treating my precious princess like a naughty dog in obedience school, but it worked! They trained her to make eye contact. Then to look up when she heard her name. Then to imitate small gestures. Then larger gestures. Then sounds. Then identify objects. Then manipulate objects. Then match objects. Then colors. And sort things by colors. Just last week she started echoing words, and not just the words she was asked to say. She just started repeating things we'd say, a word here or there. And on Sunday, for the first time in a year and a half, she looked up when Stew came in and after I said "look Lu, Dada's home!" the way I usually do, she looked right at him and softly said, "Dada". Stew put his hand on his heart, teared up, said "hi baby" then scooped her up and hugged her while we all cried. Dada had been her very first word and it had also been one of the first to go. "

This, as you may imagine, knocked me fairly sideways. These are people I knew as punk rockers rather than parents; partly because of the heartbreaking distance, I hadn't realised exactly how difficult the situation was (not helped by finding out that their medical insurance had an autism exclusion clause). 

So I thought things over for all of about three or four seconds and decided that I was going to raise some money for autism charities.
 
The Autism Society of America is the leading US leading grassroots autism organization. It exists to improve the lives of all affected by autism, by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals, and providing the latest information regarding treatment, education, research and advocacy. Specifically, the money is going to the Northern Arizona chapter (www.nazasa.org), which is going to go directly towards projects that benefit Lu and other children in the area. 

You can donate to NAzASA right here on this page. 

I've also already raised a large sum for the UK autism research charity Autistica, and am going to try and raise as much as I can for this charity too.

Get in touch if you want to know how I'm progressing. You can read my running blog at:

http://fortytwok.wordpress.com

 I don't know exactly what time I will be aiming for yet - should know a little better in a couple of weeks. But I'm hoping to run (or maybe stagger) across the finish line in Central Park in November having turned a dumb 'lifetime list' thing into leaving the world a very slightly better place. 

Thanks!

John

 

 

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