To Run or Not To Run

On October 7th, Flutie Foundation Marathon Team Director Chris Chirco sent an email to all of Dougie's Marathon Team's past members inviting them to be a part of the 2011 team. See one former team member's amusing reply below:

Based on his chirpy invitation to join the Doug Flutie Jr. Foundation’s Boston Marathon 2011 team, methinks our dear Christopher Chirco has never run a mile in his life, much less a marathon.

I think the e-mail should read a little something like this:

“It’s that time of year again! The sadists who organize Dougie's Marathon Team want to know if anyone who did it last year has recovered enough to take another crack at running their body into the ground.

Are you mad at your toenails? Want to punish ‘em and make them disappear? Watch your feet sprout blisters the size of an extra toe as you pound your feet mercilessly into the pavement in the name of training.

Ready to take this exciting opportunity to figure out which nasty, thick gel best fuels your overtaxed, dehydrated body but doesn’t make you bolt for the nearest filthy porta-potty? Better yet, learn how to slurp it out of a tin-foil package without dribbling it down your sweaty face.

Now’s your chance to commit to a running program created by Kenyans, for Kenyans. Run, leap, soar, and cry. Cry when your children ask you why you’re even doing this race when there isn’t a chance you’ll win it. Cry when the thermometer reads below freezing on the day of your long run. And cry, cry, cry as you watch your spiteful scale jump up a pound or two after spending a week putting more miles on your body than you did your car. (Kenyans apparently don’t carb load with Oreos.)

Run, don’t walk, to sign up for this internationally famous race - only to spend the better part of your spring cursing yourself.

Look forward to seeing you crawling up Heartbreak Hill!

Most Sincerely,

Chris Chirco.”

No thanks. Find some other schmuck to run this year.

And yet.

And yet I find myself considering running it again.

Of course there’s always the charity angle. If I ran for Dougie’s Team – which is realistically my only chance of stepping one blistered toe into Boston on race day since I surely don’t qualify for it – then I’ll be raising money for autism. Seeing as I have a son with autism it’s nearly a no-brainer. I could re-send the letter claiming how my training will be nothing compared to the struggles Jack faces every day. (I’m reluctant to admit that in my darkest, meanest hours of training last year autism looked pretty darn fun compared to running for 18 weeks straight. While I was lacing my sneakers over my screaming feet it was hard to ignore the image of all my children – Jack included – lingering over their Star Wars-shaped pancakes in their fuzzy pajamas. Frankly, his request for more syrup as I headed out the door seemed ungrateful.)

Raising money notwithstanding, the invitation to the Marathon has piqued my interest. Once again, I’m being offered a chance to participate in one of the most prestigious races in the world. And goodness knows I wouldn’t mind a second chance, a chance to do it better, faster, and with less visits to the porta-potty because of the pre-race Dairy Queen blizzard I mistakenly treated myself to last year.

Why, I’ll do it right this time! Better nutrition! No dairy! I’ll sprint cheerfully up the hills of Bedford and be sure to stretch afterwards. I’ll rest when I hear my body screeching in protest and push myself in moments of doubt. I will not complain to everyone at Saturday night’s party how I have to “run 18 miles before you even get out of bed tomorrow” as if I’m a member of the United States Army.

This time, in addition to autism, I’ll run it for myself.

Or not.

~Carrie Cariello

Member of Dougie's 2010 Marathon Team

Update on Carrie's decision - She did end up accepting the number only to have to change her mind due to a running-related injury just days later.

Nick's Story

Each year the Doug Flutie, Jr. Foundation and Children Making Strides award the Doug Flutie, Jr. Award to a person who has shown great commitment and dedication to raising awareness of autism spectrum disorder, or has made a significant impact in the lives of individuals with autism. The award recipient can be a parent, teacher, advocate, individual with autism spectrum disorder or anyone else who has made a difference in the autism community. In 2010, Nick Stephen was the recipient of this award. It was a difficult decision as we had many dedicated and deserving nominees. However, Nicholas stood out as a result of his accomplishments as a young adult with autism and the large number of nominations he received from various individuals in the community. Following is the story of Nick's journey as told by his mother, Janice.

My name is Janice Stephen, and my son Nick is the 2010 recipient of the Doug Flutie Jr. Foundation for Autism Award. So where do I begin?

I am sitting here at Bridgewater State University, in front of the bookstore on a Tuesday, thinking about the long journey that got us here. You see, Nick is a freshman here. Something that no one but my husband and I, and the very few people who really know Nick, ever thought would happen. When the Flutie Foundation asked me to write an entry for the blog, I thought it was going to be an easy task. But it isn’t. The road has been filled with potholes and brick walls and glass ceilings as far as Nick’s life has been concerned. I’ll give this a try though or as Nick says “I’ll give it my best shot”.

Nick is by all accounts an anomaly in his own diagnosis of High Functioning Autism. As a matter of fact, he was not formally diagnosed with ASD until he was nine years old. His primary diagnosis at age four was Semantic Pragmatic Language Disorder. At the time, trying to find out what that meant was near impossible since the World Wide Web was pretty new. The only information we could find originated in Great Britain. As time went on we found out that this specific language disorder is one that is attached to autism so there you have it. I should tell you that Nick was born in November of 1991 so he will be 19 in a few weeks. Since I am spending so much time here on campus I am thinking that maybe I should spend some of it writing the blog that everyone has been pushing me to do for years. I drive Nick back and forth from home in Plymouth to the University five days a week for this semester. On Tuesdays and Thursdays, I stay on campus instead of making the drive back home.

For this introduction entry I will tell you a bit more about Nick at this stage in his life. He graduated from Plymouth North High School in June of this year with straight A’s the whole senior year. He carried a college prep curriculum with supports from the Special Education Department. That in it of itself is quite an accomplishment. He has difficulty testing no matter what so his SAT’s were not the best nor were his scores on the state’s MCAS exams. However, Nick is the most determined person I have ever met. He applied for early acceptance at Bridgewater State and got his letter on December 4, 2009. He is currently an Earth Science/Astronomy major. Nick got here because of his grades and his attendance and his perseverance. He also got accepted to four other colleges but BSU was his first choice.

When he was nominated for the Flutie Award by the Director of Special Ed. at PNHS, SheldonDaly, he did not understand why he was even being considered and when we received notification that he actually was chosen, he was even more confused. Nick does not understand how significant this is. He thinks that everyone struggles and tries as hard as he does. It makes no sense to him that what he has done is not the norm for others with ASD or others without it for that matter. Nick sees himself as just like everyone else and has spent so much time having everyone know who he is that this award first embarrassed him to no end. When the local newspaper did a full-page spread about him complete with pictures and also included his college entrance essay (“Overcoming the Stigma of Autism Spectrum Disorder”) he walked around with sunglasses on trying to “escape the paparazzi”. Being his parents, my husband and I could not help but tell people about it and be proud enough to burst. We have had to back off on it though. One day he will be able to be more comfortable in the knowledge that he has done something that is going to inspire and push others to be and do the best they can at all times. Or at least to give it their “best shot”.

Obsessed

Carrie Cariello, mom of 6-year-old Jack and member of the Flutie Foundation's 2010 Boston Marathon team, discusses her son's new obsession.

Our 6-year old son, Jack, has made the leap from memorizing people’s birthdays to collecting information about the cars people drive. Now, instead of asking when someone’s birthday is, he points his finger in their face and barks “What kind of car do you drive?” His query resembles the credit card commercial where the large ogres demand “What’s in your wallet?”

What began in early spring as a cute preoccupation has exploded into a full-fledged obsession.

Driving Jack around all summer was like riding with a member of the census bureau. I’ve learned that Hondas and Toyotas are among the most popular vehicles in New Hampshire, with Acuras a distant third. Not to mention all of the models! This could keep Jack busy for decades. Our earnest, literal Jack, for whom memorizing the make, model, shape, size, color, and fuel source isn’t enough; he also wants to know what each car name means. Have you ever considered what a Prius is? Or how to explain the term Legacy to a 6-year old?

I’m learning a lot about people with Jack’s new interest. Responses to his question vary, but it often makes people uncomfortable to have a 6-year old glare at them and demand to know the make and model of their vehicle. Many squirm. Some snicker and look away while they pretend they didn’t hear him. Others make up cute names; “Why, my car? Oh, I call my car Shadow! Because it’s black!”

Since social cues are difficult for Jack to decipher, he doesn’t notice how his unblinking stare and pointed finger make his unsuspecting victim anxious. He wants answers and will go to great lengths to hear the car data.

If I think it’s getting out of hand I’ll step in to redirect Jack, and mouth “Autism” while I ruffle his soft brown crew cut with my fingers. But sometimes I sit back and watch them stammer. It’s like being on the sidelines observing a bizarre social experiment unfold. Most curious to me are the people who just can’t divulge this information - it baffles me every time. It’s a car, and he’s six. If you’re reluctant to admit you drive the latest in the Mercedes series, than make something up. Pretend you drive a dented grey Toyota Sienna where the goldfish crackers outnumber the children inside so we can all get on with our lives.

It’s very revealing, this car business. How did our college-age server at Olive Garden come to drive a Lexus? (“My mother’s car”, she mumbled out of the corner of her mouth with a self-conscious shrug.) Or how about the CEO of a major company in the area tooling around in a Neon? Cars seem to say a lot about their drivers.
However, the person most revealed with the car obsession is Jack himself. He’s finally cracking the venetian blinds into his fascinating brain and letting us take a peek. That can be the beauty of autism – it gives all of us a rare glimpse inside a mind as intricate and matchless as a snowflake.

I was getting frustrated when he would ask family and friends the same question about their car every time he saw them, even though he knew it. Honestly, I thought to myself, couldn’t he at least demonstrate one of his fascinating skills and blow people away with his car knowledge, the way he can spit people’s birthdays back to them? As a parent, is it so wrong to want to revel in the disbelief and awe for one teeny-tiny nanosecond? Why, maybe he is a genius! Maybe memorizing every Volvo, Nissan, and Cadillac will have a big payoff for Jack one day, maybe he’ll be the Temple Grandin of the auto industry and his movie will win an Emmy and he’ll stand up and ask the cameras to point to me and I’ll be wearing a couture gown that was designed just for me and hides the fact that I’ve birthed five children…..

Whoops, got off track there. Believe it or not, something even better than that scenario unfolded.

About halfway through the summer we realized Jack’s obsession is more than simply collecting information to categorize and store in his complicated brain. It provides him with the chance to interact with people -- often strangers -- about a subject he likes. “What kind of car do you drive” is the “Hello how are you, my name is Jack” of his world. It bridges a social gap that might otherwise seem as wide to him as the English Channel.
Watching our socially limited son create ways to make himself comfortable talking to people is a beautiful thing. Even more beautiful is watching as he gradually learns to turn their answers into a conversation; “Oh! A Toyota! I like Toyotas too! What color is yours?” On more than one occasion I’ve had to look away while my eyes filled with tears and my heart leaped with joy. Behavior we thought of as sometimes annoying, occasionally funny, and at best peculiar is something else entirely.

It’s progress.

As is so often the case with Jack and autism, it’s a learning curve for us as much as for him. We can’t always take his quirkiness at face value – we have to look inside, around, and beyond his mysterious behavior to see what drives it.

(No car pun intended.)

-Carrie Cariello

Turning 22

By Marty Martini - Flutie Foundation Board Member & Parent of a young adult with autism

As a parent of a child with autism turning 22 years of age the experience can be frightening and overwhelming. Long gone are the days where you felt a sense of security because you knew your son or daughter was going to the same program he/she attended for the past several years. You felt comfortable talking to his/her teacher that you had known for years. You have memorized your son’s and daughter’s schedule and knew exactly when they had gym and speech therapy.

Now you are facing a whole new world. The adult service system is complex and understanding it is essential for effective transition planning. When students with disabilities graduate from school or turn 22 years of age, they move from an entitlement to a non-entitlement system. While school students receive services and supports mandated by federal and state law, as adults, they maybe eligible for services from adult agencies but there is no guarantee. It is essential that parents and students understand the adult service system before services need to be accessed. Choosing the right program for your child is critically important. The process of selecting a program is analogous to selecting a college for a typically developed child. It has to be the right “fit”!

Thankfully, my son Jesse got into a wonderful program that supports his skills and addresses his needs. The process however didn’t go without advocacy and exploration. The end result for mom, dad and child is very exciting. As Jesse reports “It’s nice being an adult”!

Marty Martini

Parent/ Flutie Foundation Board Member

Marty with Daughter Jackie & son Jess

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.