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I Want You!

February 14, 2012 5 comments

This post is by Luau, who blogs at, ‘Run Luau Run.’

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!

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.

Join me by registering join the Team Up! with Autism Speaks Team—>>>HERE<<<—.

Experienced runner, novice runner, walker or couch potato – I. Want. You!

If you cannot join me but would still like to help, please consider donating here --->>> http://events.autismspeaks.org/boston13.1marathon/runluaurun

What I Heard

The author of this post is Jess, who can be found at Diary of a MomThere she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical ten-year-old, and eight-year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
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Last Thursday evening, I attended a talk at Boston University with Dr. Geri Dawson, Chief Science Officer for Autism Speaks. What follows is the letter that I felt compelled to write to her after hearing her speak.

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Ed note: I have written before about Autism Speaks and why I have stuck with them through some difficult times. If you’re interested, please click –> HERE <– to read a post that I believe pretty well sums up my position.

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Geri,

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It was such a pleasure seeing you last  week . I’ve never been one to attend a science lecture – at least not on purpose. But of course, I do a lot of things these days I never thought I would. (Like saying, “Yes, we met atthe White House.“)
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Life has changed.
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So I actually thought I was looking forward to listening to you speak.
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Lady, I had no idea.
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You proved that night that Autism Speaks is not just speaking, but listening. You made me, as a parent feel like a partner. You made it abundantly clear that you have taken in what you’ve heard from the community and incorporated it into what you say, what you do, how you think, and where you spend your (our) time, energy and money.
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I heard it in the Vision Statement, newly reflective of the diversity of perspectives within our community. In words carefully chosen to recognize and embrace radically different – even opposing – views on cure and acceptance. In a driving theme that seeks to unify, not further divide.
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“A world in which suffering because of autism no longer exists.”
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Amen.
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I heard it as you espoused the values that drive your research. Urgency – above all urgency. “We CAN hurry science,” you said. Scientific Excellence ensured by rigorous standards and consistent and in-depth review.Families as partners. Above all, I heard it when you referred to the individuals affected by autism as True North – always the guide, always the driving force of all that we do.
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I heard it as you talked about dissemination – the need not just to research, but to execute. To share knowledge, best practices, and to MAKE INNOVATION IMMEDIATELY ACCESSIBLE TO THOSE WHO NEED IT NOW.
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I heard it as you talked with pride about ’buying careers’ – when you told us with obvious pride that while 85% of AS funded fellows were brand new to the field of autism research, 95% remained after the fellowship and 100% – every single one – credited the AS fellowship with the decision to devote their careers to autism research. I had to process that for a while. 85%.
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I heard it when you talked about the leverage of funding from grants. When you told us that federal funding, private grants and other sources added ten dollars to each dollar spent by AS on the first 107 grants seen to completion. Ten to one.
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I heard it when you said the words I use constantly – “There isn’t AN autism. There are autisms.” The place came this close to sounding like a Baptist revival as I nearly shouted “Amen, sister! Preach on!” from the audience.
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I heard it as you connected the dots that so many parents have been connecting without support when you said, “Autism is not just a brain disorder; it is a whole body disorder.” Did you see me nearly trembling in the audience? YES, I thought, YES.
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I heard it when you said, “Behavioral challenges can be due to underlying medical conditions.” I thought I knew how badly we all needed to hear that reflected back to us by those with the power to affect change. I underestimated the emotional impact of hearing it out loud. It turned out to be pretty intense. Validation can be like that I guess.
I heard it as you talked about sleep issues, seizures and epilepsy, GI disturbances, food sensitivities and depression and anxiety. I heard it as you said, “We are working on understanding the obvious connections between the gut and the brain.” and when you talked about the M.I.N.D Institute GI study which you funded recently to the tune of nearly $800,000.
I heard it when you talked about the need for comprehensive care. When you talked about the Autism Treatment Network’s (ATN) academic center model. I heard it as you talked about these centers of excellence combining specialties in neurology, pediatrics, psychiatry, GI, sleep, genetics, pain and immunology and the need to create so very many more. I heard it as I said under my breath, “Yes.”
I heard it as you talked about the need to investigate nutritional deficiencies, bone density issues, creatine deficiencies, iron deficiencies, oxidative stress, mitochondrial disorders and metabolic issues.
I heard it when you said that you’ve got Dr. Martha Herbert working on establishing working groups to study the biomedical interventions that parents have been begging scientists to research. Thank God.
I heard it when you talked about the high risk natal study following more than 2,000 infant siblings of children with autism, who are at higher genetic risk for developing the disorder. I heard it when you explained that the infants are followed from close to conception through early childhood, with researchers tracking and investigating EVERYTHING in their world, from maternal infections in pregnancy to vaccines to nutrition to environmental toxins. I heard it when you said that they are collecting dust samples from the homes and using new brain imaging technology to monitor development on a level never before possible.
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I heard it when I asked you if you are looking at the effects not just of individual vaccines, but of administering them in combination and you said, “I simply believe in good science. If the science has integrity, I’m open to investigating anything that will help us find answers.”
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I felt it as my breath caught in my throat and my eyes filled with tears when you talked about the mind-blowing progress being made with genetically altered mice and the very real differences being seen in their socialization, vocalization and repetitive behaviors after treatment. I knew it wasn’t just me as my dear friend Rachel broke down next to me.
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I heard it when you talked about innovation. About the potential being shown by early trials of drugs like Memantine and Arbaclofen. I heard it when you talked about the possible, relatively near-term tractability of single-gene and possibly even multiple-gene mutations.
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I heard it in everything you said that night.
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It was the sound of US – of OUR stake in this, OUR community, OUR words, OUR HOPE.
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On Friday morning, my husband, Luau wrote the following on his blog. He typically writes about running, which doesn’t tend to overlap much with autism. But on Friday, because of you, it did.
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I need to share his words with you. I need you to know how much this matters. To our precious children, of course, above all. But also to US – to their mothers and fathers, their siblings, their grandparents, their aunts, their uncles, their cousins, and, if they’re lucky enough to have them, their friends.
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Just like funding, for every one of our children there are ten more whose fate is tied to the first. And a parent whose heart is leveraged to their (and your) progress ten times over.
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***
Quicksand And A Rope from Luau’s blog, Run Luau Run 

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I am running – pounding the treadmill.

My demeanor is calm, almost stoic, but I am sinking.

Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.

I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.

My breathing becomes labored and yet, I am still calm, stone-faced and waiting.

When the endorphins finally kick in, it is almost anti-climactic.

Yes, I feel good.

Yes, there is some release of tension.

But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.

Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.

***

I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.

Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.

That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.

***

But then last night I was thrown a rope.

Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. SGM went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.

That is exactly how I felt.

It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.

Until last night.

What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.

***

And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.

Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.

Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.

Little darling, the smiles returning to the faces 
Little darling, it seems like years since it’s been here 
Here comes the sun, here comes the sun 
and I say it’s all right

-The Beatles
Thank you, Geri. Thank you for hearing us. Thank you for dedicating your formidable intellect and indefatigable spirit to our families. Thank you for pressing on in the face of so many challenges and believing that as overwhelming as this all is, change – real change – is possible. And thank you to all those who support and share the work that you do.
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Because in your work, there is HOPE.
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Sincerely,
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Jess
You can read this full entry on Diary of a Mom, here.
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