That was eight years ago. The Red Sox have enjoyed some great seasons since then, the sting of recent events notwithstanding. But my son Jay continues to be a challenge. He still has no words to tell us what’s bothering him, whether it’s hunger, a headache, or a terrible sore throat (we learned just today that he has strep and may have had it for a while), so he gets frustrated. We do too. As a growing 12-year-old, he is bigger and stronger, much stronger than he was in 2003. When he gets angry and aggressive, keeping him and the people around him safe can be a terrifying exercise. It’s not an experience I’d recommend.

That’s what the Autism Speaks walk is all about: stopping other dads in the future, other moms, and other families from having to deal with raging choking sobbing face of autism, with the thrashing digging claws of autism, with the enduring biting sadness of autism. This Sunday, October 2nd, we’ll be doing our annual pilgrimage to Suffolk Downs to take part in the 2011 Walk Now for Autism event.

Come join us! Or, hey, here’s another idea. If you can’t make it (and I know how busy you are), then you can have some of your money join us instead. We promise to show it a good time, and then we’ll send it off to Autism Speaks to help kids like Jay. Your money will have fun, you’ll feel good, I’ll be happy. Everybody wins!

Here’s the part where you reach for your wallet and click on a link:

bit.ly/walk4jay

I’ll conclude by adding the note my wife Wendy sent out this year:

Dear Family and Friends,

Wendy Gulley

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

Today there were over 20,000 people walking. This single fact brings obvious good news and bad news. Good news: we’re raising lots of money for autism research. Bad news: autism is a growth market. I’d love to tell you to sell your autism stock, but in truth you should be buying. It’s amazing how many families it affects.

When I ask for people to give money to this cause, I’m painfully aware of how many good causes are out there. You have your favorite charities and I have mine. And if some other evil had touched my life, I would be asking you to help me fight it instead of this one. But this is the one that touched my life. It moves me; I want to move you.

When you live in a house touched by a disability like autism, it’s very easy to turn inward. Most people seem to have it easier than you. There are two mistakes here. The first is thinking that some people get off easy. Every family has troubles, but they are often hidden from view. This leads to the second mistake, which is turning inward, thereby feeling sad and lonely at once. You can’t always stop the sad, but you can stop the lonely. That’s one of the things that’s great about the walk. You achieve a practical goal, raising money, but you also get to look around and say, “My God, look at all these people who have to deal with this.” It gives you sympathy for others, and then, as a kind of bonus, some healing sympathy for yourself.

This is my story. Tell me yours. We have to keep telling each other the stories that matter to us. It’s the only way to get by.

This is a picture of my wife Wendy near the table where she was making inspiration ribbons for the walk. Each one is inscribed with the name of someone with autism.

As a result of her efforts and the rest of our team, including many of you, Jay’s team raised over $7500 and counting this year (it’s not too late to give!).

Thanks.

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

I am happy to report that the walk was a great success with fantastic weather, more than a dozen walkers on Jay’s team, and 16,000 walkers altogether.

Of course, since this was a fund raising walk, there is a bottom line. By that measure, the walk was also successful. Jay’s team (thanks to your help) raised more than $8800 for Autism Speaks, and the entire walk brought in over $1.2 million.

Every year around this time, just as the leaves are starting to change color up here in New England, I put on my fundraising hat and try to convince you to give some of your money to help rid the world of a disease that my son has. It helps to have a cute picture handy, but really I want you to think about this as a great big economics problem that’s worth your investment. Taking care of autistic kids like my son Jay is extraordinarily expensive, and one way or another that cost is visited on the economy as a whole. Anything we can do to prevent autism or mitigate its effects will be hugely beneficial, even in the cold calculus of cash.

Of course it will have an incalculable benefit for those parents in the future who might thereby avoid the visit. I regularly hear about parents who have just learned of their child’s diagnosis. It makes my gut ache. The visit is the trip to the specialist on the day your life changes. The visit is when you learn that your child suffers from a severe and lifelong neurological disorder. Listen to me: you don’t want anyone you love to go through the visit. Here is your chance to help.

I close with the letter my wife sent this year. Note the link at the bottom to the website where you can donate online. And for those of you who have already given, a thousand thanks.

Dear Friends and Family,

The 2007 Greater Boston Walk Now for Autism will take place on October 14th. Once again our family will be a part of that Walk and we are asking you to join us in raising critically-needed funds for autism research by making a contribution in support of our Walk. If you live in the Boston area, we also welcome you to join Jay’s Team and thousands of other walkers at Suffolk Downs in East Boston.

We’ll walk in honor of our son Jay, who is eight years old and severely affected by autism. He is nonverbal and has significant cognitive delays and attending difficulties. He requires constant supervision to prevent dangerous behaviors, such as bolting and climbing. Despite these obstacles, Jay is making progress at school in many areas. For example, he is recognizing a few written words now and he is using an augmentative device to make requests.

At home and in the community Jay spends a lot of time in self-stimulatory activity, especially making loud noises and shaking dangling objects up and down. But he smiles a lot, has great eye contact at times, and has gradually learned routines and become more compliant over the years. He is generally better behaved in restaurants and public places than he used to be. Swinging, climbing, and swimming are still Jay’s favorite activities, after stimming. He now has a new bedroom (added to the house this Spring), with a hook in the ceiling so that he can enjoy swinging in both the basement AND his bedroom. His sister Carolyn tries hard to get his attention and he occasionally responds.

We’ll walk for Jay on October 14 because the causes of autism are still unknown and there are no specific medical treatments or cure. We walk because, despite increasing national interest and high prevalence, autism research is one of the lowest funded areas of medical research by both public and private sources. We walk because we hope for a better world for Jay and Carolyn in the future, a world without this devastating disorder.

Whatever you can give will help! I greatly appreciate your support and will let you know how much we raised after the Walk.

Sincerely,

Wendy Gulley

Click here to get to my personal page and make a secure, online donation.

Here is the Massachusetts team. That’s Jay in the bottom right corner.

And this is the gang in North Carolina, captained by Jay’s aunt Tonya and full of people who love Jay.

Thanks everybody!

Dealing with Jay has taught me many valuable lessons, but all the same, I’d rather that you never have to confront autism in your own family. Unless we can understand more about how and why autism happens, there is the increasing and disturbing possibility that you will encounter it in your extended family some day. Research is the only way forward, and research costs money. That’s why I’m asking for your support. Go to the “Walk for Autism” web site and pledge some money for our walk. I’ll thank you right now for doing it.

I am also including below my wife’s annual fund-raising letter.

Dear Family and Friends,

Every 20 minutes, a new child is diagnosed with autism . . .

Another fall has rolled around, and here I am, asking for money for
autism research again! The 2006 Greater Boston Walk for Autism
Research will take place on October 15th, and I’m hoping you can help
by either making a donation or joining our team of walkers.

Last year’s letter was a bit of a downer, so let me report some
encouraging news this year. First, Jay has made some good progress
since he started his current school in May 2005. He is matching
colors, shapes, numbers, letters, and even words! He is nodding and
pointing well to request what he wants, and is fairly reliable at
waving and greeting people if greeted first. At the dinner table at a
recent family vacation in New Hampshire, Jay impressed his
relatives with his vigorous “yeah” and purposeful nodding when asked if he wanted a
favorite food.

I also want to report encouraging news from beyond our family. Since
2001, this fundraising walk, and many others across the country, have
been called the “Walk Far for NAAR”. But in February 2006, NAAR and a
new organization called Autism Speaks decided to combine efforts, with
the name “Autism Speaks”, in order to have one strong voice in the
fight against autism. The Walk is now called simply the “Walk for
Autism Research”, and as always, the money raised will go directly to
fund high quality autism research. (To read about research projects
recently funded by Autism Speaks, go to
http://autismspeaks.org/june_2006_funding.php)
But you might be interested to know that Autism Speaks is also making
a big impact in raising awareness about autism and advocating for the
needs of families affected by autism. For example, in April they won a
coveted three-year public service advertising campaign by the Ad
Council. The first round of commercials is already airing, with the
message that 1 in 166 children are now being diagnosed with autism.
Autism Speaks was founded by Suzanne and Bob Wright, grandparents of a
5-year-old boy with autism. Bob Wright is chairman and CEO of NBC, so
media access for this cause is now greatly enhanced. And in just 18
months, Suzanne Wright’s strong, passionate voice has been making a
difference on Capitol Hill and all over the country.

So the organization behind the Walk has changed, but the cause and the
urgent need remains the same. Please open your hearts (and wallets!)
once again to contribute to cutting-edge, important research into the
causes, preventions, and treatments, and ultimately a cure for autism.
Our goal for Jay’s Team this year is to raise $10,000. You can
contribute online at:

http://www.autismwalk.org/site/TR?px=1091121&pg=personal&fr_id=1165

Or you can mail a check payable to “Autism Speaks” to Wendy Gulley, 11
Belknap Terrace, Watertown, MA 02472. Contributions are
tax-deductible.

Thank you so much for your help. Together we will find a cure for
autism, and put this disorder in the history books.

Wendy Gulley

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

Almost every bit of the money donated goes directly to research, and even a small amount of progress can make a big difference when leveraged across autistic people all around the world. Jay has benefited from some biomedical research that has occurred in recent years. I like to focus on small achievable gains, but Wendy is always reminding me to think bigger. The motto she chose for this year’s walk is “Dream big, dream of a cure.” That’s a tall order, maybe a hundred years away for all I know, but it’s good to keep the ultimate prize in mind.