Autism Speaks walk

Jay GulleyThis is a picture of Jay. Jay is my son. Jay is autistic. We wish that he weren’t, because his autism makes life difficult for him and for those who care for him. But there you go. It is a fact.

Given that we can’t do what we desire more than anything else, which is to wave a wand and make his autism vanish, what can we do? We can feel sorry for ourselves. I’ve tried that one a lot. It hasn’t helped (not yet, anyway!). We can hope the world will spontaneously get better, but as they say in the Army, hope isn’t a plan. There’s nothing wrong with hope, but hope plus a plan beats hope any day.

Here’s the plan. I’ve thought about this, and it’s about the only thing that makes sense. We can raise money to be used by skilled researchers to help understand the origins and nature of this baffling condition. Every new scrap of insight they gain is helpful, not least for its value in helping us cope, those of us standing in the long shadow of autism. And with a plan in place, it becomes a little more reasonable to hope that we may be able to make real gains against current cases and prevent future cases of autism.

Here’s how you fit into the plan.

Coming up this Sunday, October 19th, my family will be participating in the Autism Speaks fundraising walk called Walk Now for Autism.

This is the link to my wife Wendy’s fundraising page: Wendy Gulley’s page.

Give!

As usual, I include Wendy’s email message below, for those of you who want to learn more details about what Jay’s been up to in the last year.


A letter from Jay’s mom.

On October 19th, our family will walk with 15,000 others in the 2008 Greater Boston “Walk Now For Autism”. I am writing once again to ask for your support.

Many of you live far away from us, and this annual appeal has become an opportunity to let you know what Jay has been up to in the past year, and how autism impacts our lives as he grows older. Jay is now 9 years old, and is still the cutest and sweetest boy in the world. He smiles easily and laughs a lot, and is almost always patient when his sister Carolyn is annoying him.

Jay’s wonderful school, Nashoba Learning Group, moved to a new building in Bedford in February of this year. Jay’s commute is shorter now, the building is larger and well-designed for the students’ needs, and the staff remains top-notch. During state-required testing at school this spring, Jay surprised everyone by labeling about 30 objects, such as tree, cat, book, leaf, smoke, bridge, and penguin. He is still nonverbal, so he “labeled” by matching a picture of each item to the WRITTEN TEXT! Over the years, we haven’t noticed any interest on Jay’s part in books or written text, so his exposure to text has been practically nil. How did he know how to read the word “penguin”? How did he even think “penguin” when he saw a picture of one? We were stunned. His school objectives now include lots of programs involving written text, often instead of pictures, and he is making some progress here. He also seems to enjoy numbers, though what he works on in this area is very basic so far. Jay has plenty of non-academic programs at school as well, such as tolerating tipping his head back and opening his mouth for dentist appointments.

We continue to have caring and skilled people that help us at home after school and on weekends. At home, we still spend too much of our time trying to get Jay to poop on the toilet. When not on the toilet, Jay spends most of his home time stimming: making loud noises and shaking objects in his hand. Actually, he manages to stim when he’s on the toilet too. Other current hobbies for Jay include stripping his clothes and obsessively putting items down on the floor. And he is bolting outside regularly whenever we forget to lock the front or back door. On the plus side, Jay’s been a little more interested in television this year, and has been giving more hugs! He’s also eating small amounts of a few vegetables, with a yummy reward for each bite.

Enough about Jay. You may be wondering where your funds will go, if you donate to this walk. The money raised will go to Autism Speaks (http://www.autismspeaks.org/), an organization that has accomplished so much in just 3 years. By merging with both NAAR and Cure Autism Now in their first two years, Autism Speaks was able to easily build on those organizations’ robust scientific research programs and take off running. Through the walks and other fundraising events, they committed an unprecedented $30 million in 2007 alone for new research funding into the causes, prevention, treatments, and cure for autism. With their amazing success at fundraising, Autism Speaks is truly mobilizing the scientific community and attracting experts from a broad range of fields to this cause.

In addition to research, I am also impressed with what Autism Speaks has accomplished in the areas of advocacy, awareness, and family services. They were instrumental in getting Congress to approve the Combating Autism Act last year, which provides $162 million for a variety of sorely-needed programs. For families they have launched an online family services resource guide, 100 Day Kits and the Autism Response Team for parents with newly diagnosed kids, the Autism Video Glossary (which helps parents recognize early signs), the Autism Treatment Network (a group of 15 hospitals and medical centers dedicated to improving and standardizing medical care for those with ASD), and many more amazing resources and programs.

I continue to serve on the planning committee for the Greater Boston Walk Now for Autism, helping however I can. It is inspiring to work with people so dedicated to this cause. The more money we raise, the more hope I have that we can eliminate autism in the future. I am confident Autism Speaks will spend your money wisely.

So on October 19th, 2008, Jay’s Team will walk again. We’ll walk for Jay and for all the people with autism who struggle to communicate, to interact with others, and to learn even the most basic skills. We’ll walk for all the families, like our own, who live with daily frustration and heartbreak.

Thank you in advance for your help and support,

Wendy Gulley