Believe

Dougie's 2010 Boston Marathon Team Member Carrie Cariello shares her experience of having a child with autism and what motivated her to join our team.


My journey to the Boston Marathon started long before I committed to run the best-known race in America. It began on a particularly low Saturday in November 2007. Our family had relocated to New Hampshire less than a year earlier, and although he had been officially diagnosed with Autism and was receiving services, life with our three-year old son Jack was still uncertain and tumultuous. While we’d adjusted to the diagnosis, we were still learning to accept the daily challenges of life with a child on the spectrum – alarms on the doors in case he escaped, a lock on the refrigerator to keep him from experimenting with eggs, tactics to diffuse the outbursts that put our household in a tailspin.

On this chilly gray afternoon I was paying for a haircut when I noticed a display of inexpensive necklaces at the front desk of the salon. They had little inscriptions like “dream” and “peace” inscribed in silver circles. I saw engraved with Believe and thought, why not? For $29, I could use a tangible reminder of my commitment to soldier on and believe in the unknown.
Something magical happened with this inexpensive piece of silver. During one of Jack’s legendary tantrums, I held the small circle up and asked him, “What does Mommy’s necklace say?” He focused on it just long enough for me to say, “Believe. It says believe, Jack, because I believe in you.” Over the course of the next year, he and I both turned to that exchange to calm ourselves if he started to spin out of control. Repeated probably a hundred times by now, our dialogue is unchanged: “What does Mommy’s necklace say?” He unfailingly answers, “Believe, because I believe in you.” I’m not sure which of us needs these words more.

Nearly three years have passed since I bought the necklace, and I wear it faithfully. I wear it if I know we’ll be a in a situation that’s challenging for Jack and I’ll need some strength to get us both through. During this time Jack has developed into a different boy entirely. He can hold a conversation, share a joke, and ask appropriate questions.

One snowy day this past December I was baking cookies when my friend Pam called and asked me to run Boston Marathon on her team for the Doug Flutie, Jr. Foundation for Autism. I agreed, mostly because I wanted to get back to eating my macaroons without interruption, but also because it seemed boorish to turn the offer down when my own child was on the spectrum. Before I could say biscotti, Pam dropped off a crazy-looking training schedule and I was off and running. Literally.

My training was everything you would expect from trying to get a body that’s birthed five children to run 26.2 miles without collapsing or failing in some embarrassing way (think “runner’s trots”). It was exhilarating and frustrating, challenging and rewarding. It forced me to grow both emotionally and physically and served as a constant reminder of how hard Jack’s life must be sometimes.

Before I knew it, race day was upon me. Aside from some minor hip bursitis, I felt prepared to go the distance. I’d kept to the training schedule religiously and sailed through a 20-mile race in March. I thought I was ready.

I was wrong. Although I did everything I could to prepare for this day, the Boston Marathon course owned me from the first mile. I was unused to bobbing and weaving through crowds of runners trying to find my own rhythm, and the Dairy Queen Blizzard I enjoyed the night before kept my stomach on high-alert.

Like most people who run the Boston, I was amazed and invigorated by the crowds. Over 500,000 people gathered for the race, and it seemed they were there just to cheer my name. I slapped high-fives with countless people and at Wellesley College ran past the loudest throng of screaming girls I’ve ever seen. Boston College was a blur of happy faces chanting and yelling encouragement; as I passed by our niece Jenny, she jumped in to run the rest of the race with me. I’d never been so happy to see someone in my life.

I hit one wall at mile 7 when my right hip started to tell me it was annoyed. I hit another wall at mile 15 when my left hip got jealous and started to make noise too. But I really, really hit the big wall at mile 22 when I heard bystanders shouting there were only four miles to go. It sounded like running to the Statue of Liberty and back.

Something special happened at this point. A spectator stepped in front of me, looked directly into my eyes and said, “I believe in you.”

This moment was a profound turning point at the end of a long journey. Turning away from Jenny so she didn’t see me dissolve, I had an instant to understand that in these four words, this unknown man was telling me everything I needed to know.

There are no accidents. It’s no accident I have a son named Jack who will forever interpret the world differently than most; it’s no accident I reached for a necklace that would reaffirm my faith in myself as a mother of a child with autism. And it was no accident that a stranger in a crowd of strangers spoke his mantra to me at a pivotal time in a hard-run race.

I’ve always believed in Jack. Now I believe in myself.

Carrie Cariello

Notes From A Marathon Runner

I received this great email today from Melisa Thorne, one of Dougie's Boston Marathon Team members describing her experience. Enjoy.

Well,

I ran the Boston Marathon last Monday and live to talk about it. I finished the marathon in 4h 49m and I am very pleased about that. The weather was great, the vibe was amazing and the experience is one that I will look back on with pride. I truly loved every minute of it - all 289 minutes.

Some notable moments of the weekend were (in no particular order);
1) Having access to a house on race day and not having to use a pot-a-potty.
2) Standing next to Ali Vincent and Mark Kruger (Season 5: Biggest Loser Winners) at number pick up.
3) Running next to 2 Elvis's, Flash Gordon and the Hamburglar (and fry-guys).
4) My husband at mile 11.
5) Seeing a teen-age daughter cheering her mother on at mile 18.
6) The crowds at BC.
7) The MRC gang at mile 21.
8) The Marine who carried a Marine Corp flag for the entire 26.2 miles.
9) Meeting so many extraordinary people on the course.
10)Getting my finisher's medal and mylar blanket.

I'm so glad I had the opportunity to do this. But moreover, I am grateful.

I am grateful for my wonderful friends who came out to cheer me on.

I am amazed by the number of friends who cheered me on 'Virtually'. I am overwhelmed by your kindness and support. Your positive thoughts were certainly felt.

I am eternally grateful for my family. The last 4 months of accommodating my training schedule took a lot of coordination and patience on their part. Without their support, running would not have been possible. Marathon aside, I am nothing without my husband and kids.

Finally, I wanted to thank you for supporting my running the Boston Marathon and donating to the Doug Flutie Jr. Foundation for Autism. Because of you, I was able to raise nearly $3200.00 for this awesome charity.

Thanks so much for your support. I am truly grateful for it.
Sincerely,

Melisa Thorne

Why I Run...

On April 19th, fifteen people will run the Boston Marathon in support of the Doug Flutie, Jr. Foundation for Autism. Each member of our team has their own, personal reasons for wanting to take on this challenge. Following is a very moving letter written by one of the members of Dougie's Marathon Team:

AUTISM.

So many thoughts, emotions, opinions and ideas surround this one word.

As a parent whose beautiful, perfect, two-year-old son received this diagnosis, I can tell you it’s complicated.

The parent. For you, life halts. Dreams die. You weep. You panic. You ask why. You mourn. You try to fight it. You convince yourself you will “recover” your child from this stranglehold…whatever it may be. It consumes you. Isolates you. Exhausts you. You miss the babyhood of your children who follow. They potty train themselves, learn to talk, dress and become care-givers before they can read. You struggle to remain a friend, a wife, a sister, a daughter when all you want to do is fix your child, be the mother you know you need to be. You quit your job. You read constantly, study alternative medicines. Your family can’t do the things other families do. Your child can’t handle it. You struggle through common daily activities. Your friends and family don’t know how to help. So you drift further away.

And the stress. You have anxiety, perhaps panic attacks. You lose patience and feel like the worst parent on the face of the earth. All you can do is try to find balance in your life, try to find a minute to take care of yourself. They all depend on you and you must stay healthy.

Doctors study your subgroup: parents of children with special needs, particularly autism. It is the highest stress-level group they can find. Your group also has the highest divorce rate. You join support groups. You spend thousands of dollars on various therapies and doctors, special diets and detoxification protocol. You spend on trainings to teach you to teach your child, on therapists and special schools. You may even sell your home or move in search of resources.

You question the cause. Was it something I did? All the mercury-laden fish I ate while pregnant? Was it the vaccinations and antibiotics? Was it silver fillings? Perhaps something in the environment: years of pesticides, artificial ingredients, canned goods, various toxins. Are autistic children more highly evolved people? So many theories. So few answers. You become a health-food junkie, an environmentalist, more spiritual.

In your house, you need to install a revolving door for the years of therapists and specialists that frequent it, sometimes daily. They watch your family eat, sleep, poop and play. They offer advice, criticism, theories and ideas. Many become close friends because they understand you and your family. But then they move on and a new one replaces them.

Sometimes it all works and your child is “quirky” but otherwise successful in school and life. What a relief. Sometimes, in spite of valiant efforts, it doesn’t.

Your child. He sees you mourn, cry, fight, and struggle. What’s wrong with him? He’s not sure, but clearly knows something is. He withstands hundreds of blood draws, doctors, vitamins and supplements. He eats special foods. He sits with you in hyperbaric chambers, infrared saunas, with spiritual healers and sensory therapists. He rides horses, takes swim lessons. He has special teachers. They try to play with him, make him talk, point to pictures, use his hands to make signs and go potty in the toilet. They want him to stop playing with his fingers, to look at them, to do what they ask. He watches as therapists use tickers to determine whether he knows the difference between red and blue. Has he truly mastered it? Does it really matter? Should we praise him, and what type of praise? Can he read? Count? People argue over what is best for him. Years of this go by.

He can’t wipe himself, bathe or dress himself. He doesn’t speak, play, or interact with peers. He yells and doesn’t sleep. He chews everything and steals stranger’s food. You have to bolt the doors and watch his every move because he isn’t safe when left alone. He develops seizures and self-injurious behaviors. He won’t be in GATE, or an all-star. He won’t earn a scholarship or maybe even a paycheck. He will never marry or live on his own. You can’t compare him to other children. And if you’re lucky, you will outlive him so you know he will be cared for always.

He knows he upsets you. Frustrates you. Makes you cry. Makes you mad. He can’t help it. He, too, doesn’t want it this way, but he just can’t help it. He has OCD. He pulls hair or begins to pinch and hit himself because it’s how he communicates. He clings to you and any shred of his self-confidence. And all you can do in the end is just love him.

This is what goes on in homes with children who have severe autism.

But there is something remarkable that comes out of all this. Your priorities and perspectives change. You see the world differently and it’s a blessing. You love to a degree you didn’t realize was possible, and it’s enough. You work harder and are stronger than you ever imagined. You see beauty in so-called imperfection. You don’t sweat the little things and find joy in simplicity. You know you can’t handle it all on your own and learn to ask for help or to let some things go. Your children are stronger, deeper, more loving, giving, tolerant and accepting. It’s what matters. Recovery from autism is no longer your goal. You realize it’s all OK as it is, and you just want him to know how truly remarkable he is and how much you love him. He makes you a better person. Child becomes teacher, or perhaps always was.

I am hoping this little dip into the autism world will inspire others to understand, accept and want to help those affected. Today, very few people haven’t been touched in some way by autism. It is a growing population and it lasts a child’s lifetime. There are organizations focused on cause and prevention, on interventions, on offering services and activities to families living with autism. All are equally important. It doesn’t matter to whom you donate or why. Just get involved. Even an understanding glance to a struggling parent or an informative talk with your own children about acceptance, tolerance and the importance of being a friend to special needs kids is priceless.

I have chosen to run for my son, Genaro. For all he has gone through and all we have learned. I am running to make a statement about autism. I am running for all those who live with autism today and those who will be diagnosed tomorrow. And I am running for myself. Please show your support.

Liz G.

Thank you!

Thank you to everyone who participated in the 10th Annual Doug Flutie, Jr. Celebrity Golf Classic and pre-tournament party! The new venue for the pre-tournament party, the Hard Rock Cafe in Boston, was a big hit! And a big shout out to Mother Nature for suspending the insessant rain that we've been having just long enough to get the tournament in on Tuesday.

We are so grateful to all of the sponsors of this annual event. Especially Presenting Sponsor Sun Life, Pre-Tournament Party Sponsor Sports Illustrated & GOLF Magazine, The Hard Rock Cafe in Boston, Pinehills Golf Club & The Liberty Hotel. And a GIANT thank you to all of our volunteers! You all worked so hard and it was greatly appreciated!

Check out the Boston Magazine coverage from the event here.

See you all next year!

The Staff at the Doug Flutie, Jr. Foundation for Autism

Urgent Message from the Flutie Foundation and AFAM!

Rally Tuesday at the State House!

The Senate released its proposed budget for FY2010 on Wednesday, May 13, 2009. Given the challenging economic times we are facing here in the Commonwealth, AFAM was pleased with the appropriation for the Division of Autism and the Children's Autism Medicaid Waiver. However, there were extensive budget cuts made to programs which benefit children and adults with autism spectrum disorder and their families, including Family Support, Turning 22, Employment Services and Day Habilitation programs. These cuts are devastating.

Proposed amendments to restore funding for these programs will be filed by Friday, May 15th and considered by the full senate next week. Families are urged to act on Alerts that will be sent out by the Arc of Massachusetts. Timing is critical and your voices need to be heard in the Senate!

There will be a rally protesting these proposed cuts in front of the State House in Boston on Tuesday, May 19th at 11:00 a.m. Everyone who comes is encouraged to wear red. Featured performers and speakers will include Peter Yarrow and Paul Stookey of Peter, Paul and Mary!

Given the current economic climate, AFAM supports all avenues to increase revenue in order to preserve critical services.

Thank you Dougie's Marathon Team!

The staff at the Flutie Foundation would like to thank Jenn Gamberdella and Jim McDermott for their participation in the Boston Marathon as part of Dougie's Marathon Team! While training for this grueling run, they each found the time to raise funds for the Foundation and brought in a total of over $8,000! Thank you both!

And thank you to Tom Carey who generously allows our team to meet at his home in Hopkinton each year. Tom is an incredibly selfless and generous guy and owner of Jaime Oil in Ashland, MA.

For anyone who hasn't ever been to Hopkinton for the start of the Marathon, I recommend making the trip out there at least once in your life. There is amazing energy in the town the morning of the race with tens of thousands of people mulling around and preparing for the experience. I must have heard 5 different languages just walking down Main St. to get a coffee!

Me and my daughter made our way over to the start line to watch the Impaired athletes and Women's Elite runners start and the excitement in the crowd as the gun went off each time was incredible. Dick & Rick Hoyt are truely two of the most remarkable people you will ever hear about. For those of you who are not familiar with them, here's a little excerpt from an article by David Tereshchuk:

"Dick and Rick Hoyt are a father-and-son team from Massachusetts who together compete just about continuously in marathon races. And if they’re not in a marathon they are in a triathlon — that daunting, almost superhuman, combination of 26.2 miles of running, 112 miles of bicycling, and 2.4 miles of swimming. Together they have climbed mountains, and once trekked 3,735 miles across America. It’s a remarkable record of exertion — all the more so when you consider that Rick can't walk or talk."

Each year when I go to Hopkinton to watch the start of the Marathon, I am sure to be there to see the Hoyts take off with the rest of the "impaired" participants. It's incredibly uplifting to watch. For anyone looking for a little inspiration, please visit their website and learn about this incredible father/son team.

Well, thank you again to Jenn & Jim for all of your efforts! The Foundation will be applying to the BAA to once again be an official charity of the Boston Marathon for 2010. Here's hoping that we are selected! It's always a great experience!

Chris Chirco
Director of Programming
Doug Flutie, Jr. Foundation for Autism

Flutie Foundation Partners with Find A Cure Panel

Here's your chance to share your opinions in vital research!

As a valued friend of the Doug Flutie, Jr. Foundation for Autism, you can make a difference! By joining Find A Cure Panel for parents and caregivers of people with Autism, you will be empowered to share your opinions in vital research.

What's more, for each survey you complete a minimum donation of $25 is made directly to the Doug Flutie, Jr. Foundation on your behalf. Registering is fast, free, and your privacy is completely protected.

Visit this link to sign up now, and thank you for your continued support!

Chris Chirco
Director of Programming
The Doug Flutie, Jr. Foundation for Autism, Inc.