Category: Autism & Jay

It’s nostalgia week here at the old Star Chamber. Watching the Red Sox disintegrate over the past few weeks took me back to a time before 2004 when anguish and baseball were essentially the same word here in Boston. It reminded me of an essay I wrote back in 2003: What Being the Father of an Autistic Son Taught Me About Being a Red Sox Fan (and vice versa).

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:

Continue reading “Autism Speaks walk this Sunday”

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.

Continue reading “Fall autism fundraiser walk is coming up”

It was a cold and blustery day at Suffolk Downs, but the sky was blue and the walk was a success. We’ve been doing these fundraising walks with Jay since he was first diagnosed in 2001, and they just keep getting bigger. Years ago a nearby park in Cambridge was big enough to host the walk. Now we walk around a horse racetrack with an enormous parking lot out front. It’s a great venue. Those horses have a nice track. Here’s a brief local news clip of what the event looked like: “Greater Boston Walk for Autism” raises over $1 million.

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.

This report is long overdue, since after all the Greater Boston Walk Now for Autism was on October 14th. But it took us a while to get all the final fundraising details sorted out, and then we had to do some last minute procrastination. But at last the results are in…

Continue reading “A successful walk for autism research”

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.

Every fall, my family participates in a fund-raising walk to support autism research. My seven year old son Jay is severely autistic and unable to talk. When we tell people he can’t talk, they often assume that he must still understand things fairly well, but this is not the case. Sometimes I want to explain that Jay has no language, but this is a hard concept to get across quickly. In a practical sense, it means Jay is profoundly apart from the rest of us, and likely always will be. The good news is that, as far as we can tell, Jay doesn’t suffer any mental anguish as a result of his separation. He’s generally a pretty happy kid. His parents had to mourn the passing of the child they thought Jay was. This caused real pain, but crucially this child that did pass away wasn’t Jay. He was a fiction, a projection of the hope that imagines the future can be predicted. When you look into a child’s eyes, what do you see? It’s hard to see the child, so often cloaked by heavy layers of expectation and projection. That is one gift Jay has given me: I have learned the importance of seeing Jay when I look at Jay. It’s a hard lesson to learn.

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.
Continue reading “Raising money for autism research”

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.

Continue reading “Fundraising and life with autism”

Sunday morning, under a cloudless sky, Jay’s Team walked 3.1 miles along the Charles River in Cambridge, thereby raising well over $5000 for autism research. Jay’s Team consisted of twelve grown-ups, four kids, and one dog. Thanks to all of you who donated or joined us for the walk! Here is a link to some pictures over on Flickr.

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.