Next Sunday, September 26th, 2010, we’ll be doing the Autism Speaks fundraiser at Suffolk Downs in Boston. We’ve had some good times and some very tough times with my son Jay this year. Walking is always a good way to get back in touch with the large community of other folks who know what it means to deal with autism every day. And of course it’s a great way to raise money to understand a condition that confounds and frustrates so many of us. We walk in the hope that one day we can eliminate autism, but even small steps forward can make a tremendous difference.
An event like the Autism Speaks walk is inspirational, and I have to tell you that when I’m there, my attention is often drawn to the moms. Mothers bear so much of the burden of managing the many needs of their autistic children, and there are so many of them out there, plugging away day after day. Seeing so many of them at one event always fills my heart. So I want to take a moment here to thank Jay’s mom especially, my wife Wendy, for the superhuman effort she has put into raising Jay and helping him grow to his greatest potential. If I can talk you into donating to Jay’s team this year, I want you to do it in honor of her. She makes me proud.
And if you want to learn more about how Jay’s doing, I’ll let her speak by including her annual email message.
Dear Friends and Family:
We hope you all had a relaxing summer. It is that time again when we send out our annual solicitation letter to help us raise money for Autism Speaks. As you know, our son Jay is severely impaired with autism. He is lucky to be attending a wonderful school for autism called Nashoba Learning Group in Bedford, MA, 30 minutes away from us. This past year Jay has continued to make progress at his own pace. He now answers questions by choosing from choices written on small white boards or on pieces of paper. He can match 20 state capitals to their states, from a field of three. He can do some mathematics at a second or third grade level, and he answers questions (mostly) correctly after being read short passages in science, history or other topics. Out of school, Jay enjoyed a trip to Disney World this spring and our week at the beach in NC this summer for our annual family reunion. He likes ice cream, chips, car rides and plane rides (if they’re not long), rides in his giant stroller along the Charles river, and playing in sprinkler parks. He continues to be a charmer with his beautiful smile.
At eleven years old, however, Jay is unable to speak or write his own name. He continues to have behaviors such as bolting, noncompliance and loud vocalizations that make it difficult for us to take him out in the community. He has become more aggressive, angry, and destructive with the onset of puberty. It is a terrible feeling to be scared of your own son, and there have been many of those moments for us in the past year. We struggle to find respite providers and therapists that are willing to help us at home as his behaviors worsen, and there are often cancellations that leave us spent and exhausted. We are hopeful that Autism Speaks can help prevent countless other children and their families from repeating this fate. This is why we will be participating in our tenth walk on Sunday, September 26th, 2010, at Suffolk Downs in Boston.
Last year’s walk took place on an unseasonably cold October day with heavy windswept rains. The adverse environment was symbolic of the challenges that individuals and families touched by autism face each day. Loud noises, bright lights, confusing language and a frustrating inability to communicate are some of the adversities that autistic individuals battle with every day. Despite Jay’s wonderful team at home and at school we often find ourselves powerless to help him in his fight.
Over the past nine years “Jay’s Team” has raised over fifty thousand dollars for this important cause– first for NAAR and then for Autism Speaks. Autism Speaks strives to help individual families and communities in addition to funding vital research to find causes, treatments, and perhaps someday a cure for autism. Jay’s school was lucky enough to be the recipient of a grant from Autism Speaks two years ago.
We are walking again this year to raise funds and awareness for autism. We hope that with research and treatment many individuals with autism can have brighter futures. Please support us in our cause. No contribution is too small (or too big!). You can contribute at our personal webpage or join our team as walkers at the team webpage. You can also mail us a check made out to Autism Speaks (please put “Jay’s Team, Greater Boston Walk” on your check). Your tax-deductible donation is so greatly needed and appreciated!
With gratitude,
Wendy Gulley
Rambles Blog at Star Chamber 
Thanks, sweetie-pie. You’re an amazing father to Jay.