Fundraising for autism research

Every year in October Wendy and I do our best to get you to pay good money to send us around a horse track. The part about the money is serious. It’s hard for you to earn it and we accept it with respect. The horse track, on the other hand, is a MacGuffin. It’s not really the point, but it focuses the action into a story. You pay, we walk. But what about the money? We give it, by way of Autism Speaks, to medical researchers who are trying to turn autism from a voracious family-devouring monster into a historical curiosity.

jay

There are a lot of charities competing for your money. Let me tell you why mine is the most important: my son Jay is autistic, and dealing with autism sucks rocks. That’s the most accurate statement of my situation… I chose this malady because it chose me. This gives me great sympathy for others in my predicament.

I realize that, by itself, my personal connection may not convince you to give, so I ask you to consider this. Autism rates continue their mysterious climb, and now parent-reported rates of autism are greater than one percent (1 in 91). If you don’t already know a child with autism, you will. Unless you can do something to stop it.

You can.

Donate to Autism Speaks by supporting Jay’s Team (http://bit.ly/give4jay).

Many of you already have, and I thank you for that. As usual, I conclude this note with Wendy’s annual message.


A letter from Jay’s mom.

Here in New England, the nights have turned colder, the days are getting shorter, and autumn is closing in. That means that soon the racetrack in East Boston that is usually reserved for horses will be populated by 20,000 people, all walking for the same cause. The young, the old, grandparents, friends, babies in strollers, and kids who shriek “eeee!” with glee, like my darling Jay.

The 2009 Greater Boston Walk Now for Autism will take place on October 18th, to benefit Autism Speaks. The location and the name of the walk have changed over the years, but this will be the 9th consecutive year Jay’s Team will participate. Over the past eight walks, Jay’s Team has raised over $50,000 and we will not rest until there is a cure! Many of you have donated to this walk EVERY SINGLE YEAR since we’ve started, and Ned and I want you to know how grateful we are. Your money has helped fund research that gets more varied and promising every year. Walk funds are also now used for autism awareness, advocacy for legislation, and family services. (Please see http://www.autismspeaks.org for more info on the amazing work they do.)

This annual email appeal always includes an update on Jay. Last year I wrote about some hopeful academic progress that Jay was starting to make at school. I am happy to report that his progress in academics has been nothing short of astonishing this year. He is identifying the names and values of all U.S. coins and bills, and can even come up with the value of a pile of several different coins. He is identifying synonyms and prepositions and can answer comprehension questions about what someone has read to him. He can identify well over 100 written words. The intriguing thing has been that, in many cases, no one needed to teach him these things. They only needed to figure out how to ask. For example, if you ask Jay to point to the letter ‘C’ on a board that contains the letters A, B, C, D, and E, he can’t do it. But if you ask him to point to the letter that begins the word ‘cat’, he can do it! The journey to discover how to ask has involved three trips to Austin, Texas in the past year, where I have been studying the Rapid Prompting Method, invented by Soma Mukhopadhyay from India. And the journey has included critical work by the clinical director at Jay’s school, who has been open to Soma’s insights and ideas and brings in successful ideas of her own. The journey is far from over, but the past year has been extremely exciting.

On the flip side from the academics, there’s Jay’s behavior. As already mentioned, Jay’s aggression has been a difficult issue for us this past year. The worst period was two months in late winter, when Jay had strep 3 times in a row. We were slow to diagnose the strep the first two times and he was very aggressive. We started a new medication in May that decreases the aggression without side effects, though not eradicating it completely. Jay still requires almost full assistance with his daily living skills, is still not toilet-trained, and still spends most of his time stimming (shaking objects and making loud sounds). His challenging behaviors include wandering out of the house, climbing up high on whatever he can, and touching hot objects.

So, there it is, the good and the bad of Jay’s past year, condensed in a couple of paragraphs, though of course there is so much more to the story. An endless blur of little and big challenges, tedious supervision, new strategies to try, data to collect, emails to respond to, appointments to go to, scheduling of help at home, and the coming and going of the helpers themselves– the various people that serve as our angels to help us get through…

You may know other people with autism who are not as affected as Jay. But the scary truth is that only 7% of people with autism make enough progress to grow up to be independent. Most people with autism require lifelong supervision and care. And the numbers keep rising. Currently the cause of autism is unknown. Only through biomedical research will we ever understand what causes autism and develop methods to treat it. Ned and I realize that these are tough economic times and that many worthy causes vie for your attention. Any contribution to this walk, large or small, will be greatly appreciated.

You can make a secure online credit card donation here: http://bit.ly/give4jay

Wendy Gulley

2 thoughts on “Fundraising for autism research”

  1. We are happy to contribute to something so worthy! We are glad for Jay’s progress and proud of the way you haveresponded to his needs. Thanks for walking each year! We are glad we were a part of it for at least two of those walks.
    The Carolinas Walk is just over and they reported making about $500,000.00. Yours is bigger and better, but we are coming on strong. We are hoping for a cure…but also hope much of this money goes to families who are not only dealing with a lost child, but also with exorbitant daily expenses . And we hope the health care reform includes health care for families who love someone with autism.

  2. Autism Speaks is indeed a worthy cause that gets my family’s support each year. The fact that this so-called “medical mystery of our time” continues to confound experts bugs me in a kind of visceral way. I encourage everyone who reads this blog to chip in and help be part of the solution.
    On an unrelated note, as a HUGE Hitchcock fan, I’d like to thank Ned for finding a way to use the term “MacGuffin” in this otherwise serious e-mail, as I believe it was he who coined (popularized?) the term – and I enjoyed your re-purposing of it.

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