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“On behalf of every man Looking out for every girl You are the guide and the weight of the world So fathers, be good to your daughters Daughter will love like you do…”-Daughters by John Mayer
Last night I had the privilege of speaking at the Greater Boston Autism Speaks Walk Kick Off Party. I have to admit that I was a little nervous, in part because anybody who had been to the Event a few years ago would remember Jess’ absolutely amazing, ovation-inducing keynote speech. I was asked how my worlds as a runner, a father and a person touched by autism interconnected. What follows is a video of my speech (thank you Jess for recording it), a transcript of the speech, and a few “thank you’s”. You can tell my public speaking skills are a little rusty (I hadn’t given a speech since my PTO President days), but I think I got my point across.
Good Evening.
Some of you may know me through my wife’s blog, A Diary of a Mom, as Luau.
I am a father of two beautiful girls, one of whom has autism.
I am also a believer that awareness is the key to understanding which in turn leads to acceptance – I firmly believe that if I can sit down with anyone and talk with them about autism and how it affects my little girl’s interactions with the world, I can erase one more disapproving face, one more thoughtless comment, one more snicker from the world – as parents, these are things we have all experienced at the playground or the grocery store or the mall.
Those “know-it-all” parents who look at you and say, “I would never let my child do that”. – They are a big part of why I do what I do.
But what is it that I do?
Well, I run.
And I write about running.
And you’re right – that should have nothing to do with autism; but as I am sure many of you know, when you have a child with autism, it becomes a part of everything you do.
When I write about running, I often find myself drawing parallels to the challenges, the trials & tribulations, and of course the victories of living with a child who has autism. As my audience has grown, so has the number of men and women who have now developed a sense of compassion for our families. I hope that as time goes by, more people like me, specifically dads who just aren’t sure how to make an impact, will find their own voice, their own way of contributing to the conversation, whether it be through running, talking to other parents while coaching Little League, or sitting around a poker table – ultimately raising awareness.
Now don’t get me wrong. Awareness, understanding and acceptance are not the goals – they are the vital first steps on the journey toward the goals. This is one of the many reasons why I work so hard to raise funds for Autism Speaks.
Autism Speaks understands that there isn’t just one solution to the challenges faced every day by people with autism and those who love them. And so while Autism Speaks works hard to raise awareness, they are also tirelessly working to unravel the mysteries of this epidemic using a reasoned, scientific approach, pushing for good, solid science to eventually answer the myriad and endless questions we have.
As men we are wired to “fix” things. As fathers we are wired to protect our children. This is our nature. But autism is neither something that can be fixed nor something we can protect our children from – instead it is messy, complicated, hard, frustrating. And so as fathers we lose faith in ourselves.
But I am here to tell you tonight, no matter how lost you may feel, no matter how overwhelmed by the process you may be, there IS a way that you can help, there IS a way that you can make an impact, not only for your child but for all of our children.
You walk. And as you talk to your friends sitting around the poker table, to the parents at the little league game, and to your co-workers about why you are walking, I bet you get to see judgement replaced by compassion and ignorance with understanding.
The first time I ran the Boston Marathon, my wife handed my an Autism Speaks pin to wear during the race. Her message was that if our little girl could fight each and every day to interact with the world around her, then dammit, I could drag my butt up Heartbreak Hill even with my legs failing me. And when they did – I put my right hand over my heart where I was wearing the pin – I made it past Heartbreak Hill and finished with a Personal Record of nearly 25 minutes.
I now wear this pin to every road race I participate in. This simple token does two things:
- It gives me strength when my legs start to tire.
- It starts a conversation and helps me pull more people into my community of understanding.
I run, I write, I talk, and I walk for Autism Speaks because to quote one of my newest heroes, Autism Speaks’ Chief Science Officer, Geri Dawson, I want “A world in which suffering because of autism no longer exists.”
Several weeks ago, I had the privilege of listening to Dr. Dawson speak about the latest scientific breakthroughs and ongoing research initiatives that are being funded by events like this. During her talk she gave me something I had been struggling to find in the preceding weeks. We were having a particularly hard time and had let our fears for our baby’s future grab hold of us. But on the night that Dr. Dawson spoke, she gave me, us, the gift of hope.
The hope that “A world in which suffering because of autism no longer exists.” is possible.
“A world in which suffering because of autism no longer exists”
That is not only Autism Speaks’ mission statement, but also mine – not just for the sake of this dad’s little girl, but for all of our loved ones who live with autism every day.
Thank you for being here. Thank you for listening. Thank you for helping to make the world a better place for my little girl.
***
I would like to thank Jess for helping me turn my crude rough draft into a polished piece; Kelley Borer for inviting me to speak (I was convinced she was asking the wrong member of our family at first); Autism Speaks for helping make the future brighter; Randy Price for continuing to be a fixture at every Kick Off event and walk; and last but certainly not least the amazing people of the Teamsters Local 25, who have raised nearly $1,000,000.00 for Autism Speaks – Sean, Trish and Tom, you are Heroes in my book.
Run Luau Run 
[…] read and watch his speech — HERE […]
Love your speech. You and Jess are changing the world for our kids.
Thanks Jersey!
rusty or not, you done did good Luau!!! thank-you on behalf of my Aidan and for all the kiddos I know and care for.
Thanks Sheila! And you are most welcome!
Love this Luau! My husband is an awesome autism Dad and runner also. Like you he wears his pin proudly at each race and he also has the puzzle piece tattoo on his arm (he rocks the sleeveless no matter the weather :))!!
That is good to hear! Maybe someday your husband and I can run a race together!
You and Jess are amazing. I am continually inspired to try a little bit harder each day as I work with children with Autism. Thank you for that gift.
Thank you Katie! Together we can get there.
DOAM reader here… great job Luau! Thanks for all that you do!
Thanks Sarai!
Your family inspires me and gives me hope. I’m so thankful that you and your wife open yourselves up for the rest of us living with autism – it makes me feel much less alone.
We are all definitely not alone Angela.
Fantastic job, Luau! Absolutely fantastic, I’m so proud of you!
Love you,
Mom
Very well done Luau! Nailed it.
Wonderful Speech! You did a great job. I’m sending this to my husband who always tells me that he doesn’t know if talking to the guys at work will actually make a difference. Maybe reading from another father’s perspective will help solidify the need to speak up.
I hope he does – at the very least, it fosters awareness. It also lays out the framework for support, and I don’t mean that only for tough times. When our children hit milestones or overcome some obstacle they have been working on, it is sometimes hard for us, as fathers, to celebrate those moments – in part because many of those milestones are the every day, ho-hum accomplishments our friends’ children achieved long ago. BUT when they know our situation, when they know what our child struggles with, then they can share in our joy, share in our pride. And then that happens, that shared joy is greater than the sum of the individual parts.
There you went and made me cry again, Luau. “A world in which suffering because of autism no longer exists” – my new prayer.
Sorry about that Liz. 🙂 When I heard that line, it was like a lightning bolt.
amazing! ….loved every part of your speech. *standing & applauding*
Thank you.
your speech was great, i cant run because of medical problems, i wear a large butterfly autism bangle so that it can be seen and i get asked about it, my grandson is 5 at the upper level of autism my son is 18 lower spectrum, my son has done brilliant at college passed is exams and is waiting to see if he has another placement to continue on with Business and IT, he now wants to do design, i hope he will get there i know he will, my grandson is doing so well at his school to, many long years ahead for him, but with love and understanding he will also excell
…and I bet your son will be a wonderful designer.
Keep wearing that butterfly autism bangle…whether it’s through running, a bangle or whatever else, as long as we keep talking about it and spreading awareness I know the world will continue to become a better place for not just our kids, but for all whose lives are touched by autism.
Thank You. Really Thank you. For all your work as a Dad, as a family. And for saying this words. I shared it with my husband, whom I think is having hard time accepting the diagnosis of our son. Harder than me. ( btw can’t write anymore son is pulling the chair and saying one of his 4 words.. “up” )
Sabrina – thank you. It’s tough for us dads…it took me a while to get to where I am…I kept asking, “so how long until she is better?”…I think it is the way both nature and society have designed us. Patience. We are like large freighters on the open sea – it’s hard for us to change direction, but once we do, we are relentless.
*Balling my eyes out* That was poignant and beautifully spoken. Thank you.
Thank you Barb…sorry for the tears. 😉
Thank you! That’s exactly it and I share your belief(s) – for each person like you, or I, or any parent of a child with autism who can sit down and explain, share our stories, introduce the world to our kids – there is change. Thank you for raising your voice and being an involved dad. Great job!
Just trying to keep up with what great moms like you do to better the world!
Wow. That’s all I’ve go, Luau. Wow.
😉
You rocked it, Luau. Your words, just as your footsteps running each race, are changing the world. xo
one step at a time…we’ll get there!
My eyes are a tad leaky today so I’ll simply say “Thank you” — for the walking, running, speaking out, speaking up, and carrying the torch of hope even when you are weary. You done good, papa bear.
thank you so much
awesome – keep it up! I have a son with Autism and have recently taken up running again – ran my 1st marathon 3 weeks ago, and why – because if he can do what he does with the challenges he faces, then I have no excuses whatsoever! thanks for you blog, cheers Paul
nicely done! thank you so much.
Thank you, (written with tears streaming down my face)…I know how I feel as a mom to our 3 yo girl with autism and my husband and I struggle to understand our each individual reactions. Speaking up as a dad is wonderful and we appreciate all you and Jess are doing for our kids and our families!!!
much like our kids are spread across a spectrum, so too are each of our reactions and how we cope. fight through the struggle – it will make your bond stronger.
That was just wonderful. I will share it with my husband. You just did a beautiful job and I am wiping away tears from my eyes. Thank you for your advocacy.
Great job. I’m honored to know you!
The feeling is mutual CeeCee!
Wonderful, inspiring speech! Thank you for all that you do for our kids.
Thanks Tanya – we are all in this together.
[…] support our families. There were people on the spectrum, of course along with aunties and grandmas, fathers, sisters, brothers and friends. . But so too there were Neuropsychologists and teachers, insurance […]
Luau. You. Are. A. GREAT. dad.
Thank you Pepper!
Thank you, nail on the head!
Thanks Mark. Means a lot.
Luau, usually I post to your wife’s wonderful blog, but today, I just had to reply here. What a wonderful, heartfelt and well-written missive to share with such an important group of autism advocates and families. You truly nailed it when you spoke about a “world where suffering from autism no longer exists”. That’s really the heart of the matter for all of our kids- alleviating the suffering they, and often their parents, endure. It is clear to me there are two great communicators in your household, with your daughters as contributors as well! Congratulations on a fabulous speech, my husband will be reading this post as well!
Thank you so much, not only for taking the time to listen but for sharing it as well.