Last Saturday I had the honor of attending the Boston Autism Speaks Walk Awards Dinner. It was an evening filled with inspiration and hope. While there I spent some time talking with Erica Guinta, head of the Massachusetts chapter of Autism Speaks. She was excited to tell me that Autism Speaks and the 13.1 Marathon Series had teamed up to make Autism Speaks the official charity of 13.1 Boston. For the September 16th event, Autism Speaks has pledged to field 400 half-marathoners. Each of those runners will commit to raising at least $500, meaning that we will raise at least $200,000 for research, advocacy and awareness programs.
This is where you come in.
I am NOT asking you to donate.
I am NOT asking you for money.
I want YOU!
I want you to come cover 13.1 miles with me, where we will start at historical Suffolk Down race track and “dash through East Boston, Revere, and Winthrop, take in a stunning view of Downtown, and smell the salt air of the great Atlantic Ocean! The Boston 13.1 Marathon is (also) WALKER FRIENDLY. The course will remain open for 3 hours and 30 minutes (16 minute/mile pace).”
We are all touched by autism – whether it is ourselves, a family member, a neighbor or friend. If you haven’t been touched by autism, chances are you will – and soon.
I was inspired in listening to Autism Speaks President Mark Roithmayr Saturday night speak of a generation of children who are growing up with the understanding that kids like my little Brooke are “just one of the guys,”; of high school basketball and football players who were coming up to him simply to ask, “what can we do for so-and-so”; of college kids who were packing auditoriums to hear him speak on a Thursday night (I don’t know about your experience, but my Thursday nights in college were generally spent in the fraternity basement).
There is a generation of kids who are growing up with awareness, knowledge, compassion.
“Just one of the guys.”
It made me realize that there were in fact, many girls at Brooke’s school that really do just look at her as one of the girls. Yes, they know she’s different, but they just don’t care. They like her and she likes them. In fact, this morning at drop off, a girl that was in her class LAST year came up to her to give her a pink teddy bear for Valentine’s Day. Brooke hasn’t had a play day with this girl since last summer, yet this young lady thinks enough of Brooke that she felt compelled to give her a Valentine’s Day present.
This kind of awareness, this kind of comfort would, in part, not be possible were it not for the awareness efforts of organizations like Autism Speaks. In turn, organizations like Autism Speaks would not be successful were it not for the incredible efforts of you. Yes, YOU.
Whether you are an experienced marathoner, an avid walker or just a getting off of the couch, I would like to invite you to join the Team Up! with Autism Speaks Team. They make fund raising easy.
2012 Team Up! with Autism Speaks benefits include, but are not limited to:
- Race Entry (which means you don’t need to worry about the $65 – $100 entry fee)
- Team Up! with Autism Speaks Runners Tank or Long Sleeve, and an Autism Speaks dri-fit hat
- Pre-Race private team dinner for you and a guest, location TBA
- Customized fundraising page
- Team Up! Facebook Page
- Virtual Coaching by a certified running Coach Chris Fales
- Fundraising Tips and Opportunities
- Dedicated Autism Speaks staff
- Race Day Cheering Section at Mile TBA
- Race Day Team Up! Tent for pre and post race usage
- Team Handbook- In a PDF form and downloadable for reference at anytime.
I will add one more “benefit” if you are a Boston local. If you will be running your first half-marathon at 13.1 Boston, or just need some inspiration to get out there, I will organize weekly weekend long runs in the weeks leading up to the event. 7 months is a long ways away; plenty of time to get yourself ready for what is sure to be a fun-filled, inspiring day.
If you are an out-of-towner, what better excuse to get yourself up here for a visit? You’ll get to see New England in the early Fall, you’ll get a great run in, you’ll raise funds for a worthy cause, and best of all, you’ll get to have dinner with me the night before the race…okay, well, maybe that last one is not such a great excuse. Regardless, whether you decide to dine with me or not, I want you here.
You love to or want to run/walk.
You want to help.
On September 16th you can do both.
Experienced runner, novice runner, walker or couch potato – I. Want. You!
By Rebecca Fehlig the National Director, Field & Chapter Development
So my friends who don’t run hear that I’ve completed 6 marathons and usually say, “wow, you must be in really great shape.” Or “I could never do that.” And those who have run with me know my response is very appropriately, “nah, I just run slow.”
Sunday morning I stood huddled in my corral waiting for the anthem to kick off a 26.2 journey will thousands of fellow runners in beautiful downtown Phoenix. As I waited in my goodwill warm up throw-aways, I looked behind me curious how many more corrals were behind me. That’s when it hit home….I was in the last corral. You see, runners are assigned to a corral based on their estimated finish time. In other words, they want to make sure the slow runners down get trampled by the clock watching, Boston seeking athletes. As I continued to size my fellow corral 7ers up and down since I know we’d be spending quite some time (5 hours actually) together, I started to get sentimental about how much I enjoy this group. Don’t get me wrong, I sincerely admire the stamina and focus it takes to earn a spot in the front corrals. But I personally never felt the joy from watching a clock as my gauge on a meaningful running experience.
If you hang out in corral 7 you’ll see a group that is competitive, but I suspect we don’t strike you as the typical long distance runner. And I strongly suspect most, like me, are there for a much higher purpose that their clock time. My corral mates are definitely a more ‘mature’ crowd. Many are recovering from a variety of injuries, some actually quite serious. And quite a few of us are there because we are not particularly good runners, but we want to support a cause ad agreeing to run 26.2 miles is an easy way to show your dedication for a charity and raise funds to support it. Around me are tribute signs for Cancer, MS, Leukemia & Lymphoma. This is my crowd. I run for autism…and more specifically, I run for Autism Speaks.
I cannot express how powerful and uniting a marathon is amongst runners. And when you display your passion to support a mission through a sport, well, we runners just can’t help but start talking and sharing throughout the 26.2 mile trek. The upside to having a slow race is you just have more time to spread awareness amongst thousands of new running friends. And when they see the blue puzzle piece on my shirt, many inquire
I suspect the charity runners in corral 7 chose there marathons as their distance of choice for another reason beyond fundraising. For this distance does something to your mind, body and spirit that you cannot identify with until you get to mile 24. For some the infamous ‘wall’ is mile 20. My struggle begins at 24. Mile 24 is my wall, or more appropriately, it is my meltdown.
If you are in the autism community, the term ‘meltdown’ is a familiar term. Often confused with a tantrum to those who are not familiar, an actual meltdown, if you ask any parent, is much more serious. When I think of what a person with autism must experience mentally when a meltdown strikes, the following comes to mind: last resort, irritated, uncomfortable, stuck, frustrated, help me, I can’t, stop.
Now please understand that I don’t intent to diminish the severity and spectrum of this neurological disorder by comparing it to a race. But in my attempt to understand those Autism Speaks serves, I can only identify with the ‘meltdown’ that I experience at mile 24.
“But there are only 2 miles left. Buck up and just get through it.” Yes- that is what I think my logical reaction should be at this point, but when your body is depleted, your mind does not always cooperate. In fact, mine searches for an escape. My escape includes me romanticizing the idea if the medics taking me away on a stretcher, sharing some colorful 4 letter words, and a few times…even tears. (I am thankful that mile 24 has few photographers. For as many a fellow runner and obviously a fellow fan of Tom Hank’s League of their Own, have shared, “There’s no crying in running.”)
Training for and the race itself can be hard on your body, especially as I zone in on the “40 and 49” age category, yet it is essential for my mental health. Before each race, I go in knowing it may be my last. And I always go into it with every intention of being ‘meltdown-free’. I suspect my fellow corral 7ers are thinking about the pain felt at their miles 24 as a way to connect to loved ones’ or their own challenges-be it fighting cancer, MS or autism.
Getting to mile 25…that is the key. Just as individuals with special needs have their own desired outcomes unique to their abilities, getting to mile 25 is mine. For once that hurdle of mile 24 is behind me, mile 25 is the light at the end of the tunnel. My spirits lift, my posture improves and my pace increases. “I got through Mile 24…I can do this!” I don’t know if this is how someone with autism feels when they avoid or maybe just survive a meltdown, but I’d like to believe at the end of it, they come out feeling a tinge of hope.
In fact, I imagine the reason my fellow corral 7ers decided to run in Phoenix with me last Sunday was for that one reason…Hope.
Are you Teaming Up with Autism Speaks??
Guaranteed Entries are Available, space is limited:
NYC HALF MARATHON- March 18, 2012 http://events.autismspeaks.org/nychalfmarathon - SOLD OUT
NASHVILLE ROCK ‘N’ ROLL MARATHON – April 28, 2012 http://events.autismspeaks.org/RNRnashville
SANTA BARBARA WINE COUNTRY HALF MARATHON – MAY 12, 2012 http://events.autismspeaks.org/santabarbarahalf
ESCAPE FROM ALCATRAZ TRIATHLON – JUNE 10, 2012 http://events.autismspeaks.org/escapefromalcatraz - SOLD OUT
NYC TRIATHLON – JULY 8, 2012 http://events.autismspeaks.org/NYCTRI
CHICAGO ROCK’N’ROLL HALF MARATHON- July 22, 2012 - http://events.autismspeaks.org/teamupchicago
BOSTON 13.1 MARATHON benefiting AUTISM SPEAKS – SEPTEMBER 16, 2012 - http://events.autismspeaks.org/boston13.1marathon
CHICAGO MARATHON – October 6, 2012 - http://events.autismspeaks.org/teamupchicago
NYC MARATHON – November 4, 2012- http://events.autismspeaks.org/nycmarathon
“Autism is like running a marathon, it isn’t a sprint. Patience, focus, persistence and advocacy are the keys to providing our children a brighter future than today.” – Pat Kemp
Team Up! with Autism Speaks is dedicated to raising funds to support the mission of Autism Speaks through endurance events that we partner with. Our goal with each race is to raise awareness and funds through races. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Please join our team and help us accomplish our mission!
Billy Mann, father, husband, Autism Speaks Board Member, believer…I am 42 years old, not graceful and not pretty, I’m training hard and a week away from the New York Marathon. Between online donations, mail-ins and my awesome friends, P!nk and Carey Hart for contributing $25,000 towards the $110,000, we are only about $33,000 away from reaching our goal of honoring the ONE in 110 children.
TEN REASONS why I’m running the marathon for Autism Speaks
- I’m running to honor the incredible autism moms out there like my wife for whom every day is a marathon that tests their limits and then some.
- I’m running to acknowledge children at all ages who, like ours, spend months/years learning how to simply hold a fork, or speak a word or learn to put on their clothes by themselves. The 5 hours or so it is likely going to take me to complete the 26.2 miles is nothing next to the 40 hours of therapy my son needs every week just to fight for bare basic skills. If these kids can do that, I can push myself to the limits to do this.
- I’m running for the parents but also to acknowledge the siblings and grandparents—in or out of any organization–that came before my wife and I, to thank them for being on the front line of advocacy before there was an Autism Speaks, before there were any services and they were brave enough to find a way forward.
- I’m running for parents whose children with autism are now becoming adults with autism. Between now (when my oldest son is 9 years old) and when my family faces this transition, today’s parents who are addressing this will have done so much to benefit families like mine and I want to honor them now, and always.
- I’m running to honor the high-functioning autism community and say thank you for educating us and ensuring that the world remembers that every individual with autism—however they are uniquely affected– has a voice, an intellect, gifts and talents, a point of view as valuable as any citizen and each individual contribution to our world should be respected, protected, embraced and celebrated. I am running to say thank you to them, too.
- I’m running because the human body is not meant to run 26.2 miles but autism makes us go beyond our limits. I’m running because it’s hard, because it takes me out of my comfort zone, because I feel awkward doing it, because it hurts, because it takes leisure time and sleep from me: all things that our families face every day and it is a small gesture by comparison.
- I’m running to acknowledge parents and families many of you know but do not realize that right now, silently, they are at the end of their rope and feel that they can’t go on another day struggling with autism’s impact on their lives because they are just strapped emotionally, financially, physically and even spiritually. These are the parents who will keep my legs moving when I feel I cannot go on any more because they find a way.
- In the past 7 years since we received our son’s diagnosed, autism prevalence soared from 1 in 166, to 1 in 150, to 1 in 110 (and 1 in 70 boys) in the USA. It is 1 in 56 in the UK. It is 1 in 38 in S. Korea. Every time I share the statistics with people they always ask the same question, “Why?” and all I can say is the truth: we still don’t really know. With the numbers rising much faster than anyone could have imagined, we are lost without raising money. I am running so that when I ask you to give, you know I’m in it with you every step of the way.
- I’m running to honor Autism Speaks, every local chapter, every advocate, every parent or sibling who wears a pin or has a puzzle piece on their car or baseball hat. I am running to say thank you for being a safe resource for families like mine.
- Lastly, I am running for Christian Hildebrand, an extraordinary little guy who God placed in the right hands with the entire Wright family and in so doing inspired real change in the world for all of us affected by autism.
I don’t know if we can reach the $110,000 for the 1 in 110 kids, but the marathon isn’t for another two weeks. I’m not running to win, I’m running to honor.
This is a guest post by Dr. Krysti DeZonia, a founding member of TERI (Training, Education, and Research Institute) and the CEO of the International Association for Life Quality.
Let’s start with a basic fact: Parents with kids who have autism need more help.
We simply aren’t able to access the degree of support we need in order to help our children, and ourselves, lead happy and fulfilling lives. We are stressed, tired, and looking for answers that don’t seem to be available to us. It is, without question, time for a new model of family support.
We think we have at least part of the answer: Special Needs Life Quality Coaching.
For the uninformed, a Life Coach is someone who is trained to help you meet goals that you have been unable to attain without some help. A Life Coach will assist you in designing an action plan to change careers, recharge your love life, or earn your first million. They hang with you until you reach your goals.
After 30 years, when looking for a way to formalize our support for parents and expand it worldwide, Life Coaches came immediately to mind. Upon further research, we found—to our great surprise—that no one is providing specific training to people so they can serve families whose children have special needs. We closed this gap by designing, and offering, online Special Needs Life Quality Coach training.
Given that this is a completely new career path, we were uncertain whether our idea would, in reality, meet the unmet needs of families and individuals with autism and other special needs. We also weren’t sure who would be interested in taking the class and in starting a private practice in this field. Here’s what we have learned.
Almost every family we talk with is interested in having access to a Special Needs Life Quality coach. There isn’t a need for too much explanation—they get it.
Our class is offered online and designed for working people, so anyone living anywhere can take it. The hours are flexible, and the class gives students opportunities to have direct experience with families and their children or adults as well as with their local service delivery system. By the end of the 16-week course, they have learned valuable coaching skills, have forms and other tools for documenting their progress, and are able to access follow-up support when they need it.
We also weren’t sure who would take our classes. We have found that our students come from all walks of life, but are primarily professionals who already have a private practice and want to extend it (financial planners, attorneys, psychologists, etc.), educators, and parents or other family members. These are all people who see an unmet need and are anxious to fill it.
How hard has it been for coaches to find families who want their services? Not hard. One of our coaches, Ben, had 16 interested clients after he posted a notice on a local autism forum—way more people than he could handle. He specializes in helping individuals with autism develop social circles that will, hopefully, grow into friendships. He’s having great success so far.
Our dream is that the help of a Special Needs Life Quality Coach will soon be as available to families and individuals with autism as is speech or occupational therapy. Spread the word.
If you want to learn more about Special Needs Life Quality Coaching classes or services, go to www.teriinc.org/ialq or call 760-721-1706.
Dr. Krysti DeZonia is a founding member of TERI (Training, Education, and Research Institute-www.teriinc.org) and is the CEO of the International Association for Life Quality. You can follow her blog at www.QandAwithDrK.com.