Fundraising and life with autism

Hey! It’s that time of year again when I ask friends and family to reach for their checkbooks and consider supporting autism research on behalf of my son Jay’s team. Jay’s team will be walking as part of the Walk Far for NAAR fundraising effort.

I’ve written various things about Jay in the past, but this year my wife Wendy put virtual pen to paper and wrote an eloquent update on Jay’s progress and a gentle encouragement to underwrite our adventure. I include her note below, but if you want to cut straight to the chase, you’re welcome to donate online now.

Dear Family and Friends,

It is late August, time for schoolchildren in New England to do their
back-to-school shopping and to try to soak up the last days of their
summer vacation. But our little boy Jay has been in school all summer. While Jay’s peers are gearing up for first grade and their first experience of 6-hour school days five days a week, Jay has had over 30 hours per week of one-on-one instruction year-round for four years now. Yet at age 6 he still functions cognitively at the level of a typical one-year-old. Jay will not learn to read and write and add this year. He will not make friends at the playground, listen to
stories read by a teacher or parent, or get excited about Santa Claus. Instead, he will work on goals such as expanding his speech beyond four sounds (buh, duh, tuh, puh), using a fork, and copying straight lines (a goal since he was two but still unmet).

In July, Jay underwent his biannual testing by our neuropsychologist,
Dr. Castro. Three weeks ago, Ned and I sat in Dr. Castro’s office to
hear his feedback about the testing. It was no surprise to hear that
Jay had made basically no progress since his testing two years ago,
but it hurt all the same. We know that Jay has made progress in
important ways that these tests don’t pick up: such as following
directions in our everyday routines and bolting less often in places
like airports. But we also know that his maladaptive behaviors have
increased and become more serious. He gnawed on wooden furniture for
several months this year, threw down chairs, and pulled framed
pictures off the walls and threw them down, sometimes shattering the
glass all over the place. With various interventions, these behaviors
are gone for now, but currently we are dealing with eye-poking,
constant attempts to touch light bulbs and other hot objects, very
loud vocalizations, and occasional wandering out of the house. Clearly Jay continues to need constant supervision. He is now at a school that seems to be a great fit for his needs, with strong leadership and highly qualified staff, so I am more hopeful about his future than I have been in a long time. We have a team of babysitters, who help me on different days after school and for some respite on weekends. This allows us to get outside with Jay and Carolyn, give each of them some personal attention, keep them safe and clothed and fed, and generally save my sanity.

Well, that’s a bit of what life with Jay is like, but I do want to say that he is a happy, sweet and easygoing boy in general. He smiles a lot, and does connect socially at times. I am slowly learning how to make peace with autism, and not feel defeated by it. One thing that gives me hope for future generations is the National Alliance for Autism Research (NAAR). On September 25, Jay’s Team will be walking once again in Boston’s “Walk FAR for NAAR”.

For many of you, this is the fifth year you have received an email
letter from us, asking you to help us raise funds for autism research. Your support has been wonderful over the years, and we hope it can continue. The urgency of this cause seems to increase with every passing year. In 1990 autism was said to affect 1 in 2500 people in the U.S. When Jay was diagnosed in 2001, the figure was 1 in 500. A couple of years later, it was 1 in 250. Now in 2005 it affects 1 in 166 children, according to the Centers for Disease Control. This statistic is startling, and clearly better diagnoses cannot account for this huge of an increase in 15 years. We need answers. We need high quality research into all aspects of autism, and we need much, much more of it. That’s where NAAR comes in. The National Alliance for Autism Research (NAAR) has made an incredible impact on autism research in the past decade, especially with the huge success of their fundraising walks. The 65 NAAR walks held since May 2000 have collectively raised over $18.3 million for autism research. And this money has been leveraged into more than $50 million in larger research grants from the NIH. More information about the research projects NAAR is currently funding is available here.

For those of you who live near Boston, we hope you will walk with us
as part of Jay’s Team on Sunday, September 25. The walk starts at
10:30 AM at Artesani Park in Brighton. Come join thousands of others who care about people with autism, who are alarmed at the epidemic, and who are doing something concrete about it. If you’d like to walk with us, you can register online or I can send you a brochure with registration information. A personal fundraising webpage is automatically created for any walker who registers online, making it easy to ask for online donations by email (like I’m doing!). Of course, you can always bring donations with you on walk day.

For those of you who live near Charlotte, NC, for the first time there will be a team walking in Jay’s honor in the Carolinas Walk FAR for NAAR! This event is October 8 and my sister-in-law Tonya James is the team captain of the JayWalkers.

For those of you who won’t be walking, we hope you can sponsor Jay’s
Team with a donation to NAAR. You can contribute online here or mail a check payable to NAAR to Wendy Gulley, 11 Belknap Terrace, Watertown, MA 02472. Contributions are tax-deductible.

Thank you so much for your help. I realize there are many worthwhile
charities to give to, and I am very grateful for your support of NAAR.

Wendy Gulley