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This post is written somewhat stream-of- consciousness style. I have had two streams in my life running parallel to each other the past few weeks. I’m not sure what one has to do with the other, but they somehow feel connected…at least to me.
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So a few weeks ago I tweaked my right knee again. I’ve been trying to ignore it, thinking that if I run more slowly, if I run more lightly, if I stretch more regularly, the pain will eventually go away. I’ve been following a training schedule for the upcoming October 3rd Smuttynose Marathon, and my rest days have helped, but honestly, after every run lately, I battle with varying levels of soreness.
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Over the past several weeks, autism has raised its open hand on several occasions and slapped me pretty hard in the face. Every time it did, as much as I tried to put on a brave, happy face, it hurt. A lot.
I have, for the most part, long been the happy-go-lucky member of my family. As a kid growing up, I just kind of rolled with the punches. Now, with a family of my own, I still am the one who stresses the silver lining in any situation. I am the one who emphasizes the positives and ignores the negatives, almost to a fault. It’s not always easy, but I work hard to remain positive in just about any situation.
Even when autism slaps me in the face, I will often turn the other cheek and smile. Even when my Brooke goes to hide in the bathroom for 25 minutes, shredding a plastic bag meant for her wet bathing suit, because both the visual and auditory stimuli from a camp activity is overwhelming, I say, “well, at least she’s using her tools to remove herself from the situation instead of having crying fits like many of her typical peers.”
Even when she goes to a birthday party for one of her classmates and just can’t seem to appropriately break into the social interaction of several of her friends, awkwardly trying to insert herself and ultimately failing, I say, “She’s socially motivated! She’s not shying away!”
See? Silver lining – quite possibly augmented with a dose of mild denial. Though denial may be the wrong word. I am not in denial of the fact that my baby girl has autism. Shoot! I’ll tell anybody who will listen about it. But maybe I’m in denial about some of the aspects of her autism that affect her life.
I have never been one to dwell on the negatives. At least, not on the outside.
But I’m tired. I try not to show it. I try to re-frame it. And very often, I convince myself everything is going to be all right – even when things look bleak. But those slaps get harder and stronger. As she gets older, the gaps become bigger and more noticable. My attempts at smiling have become less genuine. The tears that I shed in private when no one is looking have become more common.
I wonder and worry about the future (both immediate and more frighteningly, distant) of my little Brooke.
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On Tuesday night I attended the Kick-Off for the Autism Speaks Boston Walk. Don’t worry. I’m not here soliciting donations (that’s the topic of another post). The Kick-Off is meant to pump up the walkers as they get ready to shift their fund-raising into high gear, usually done with inspirational speeches from parents and politicians. I think they did a good job of that, but for me, it was Autism Speaks’ President Mark Roithmayr’s speech that struck a chord with me. He talked of the scientific research Autism Speaks funds and the recent findings that are helping to unlock and solve this puzzle we call the Autism Spectrum. There may never be a “cure” so to speak for autism, but the more scientifically based knowledge we have, the greater we will understand this disorder. The greater our understanding, the better equipped we will be to help our autistic sons, daughters, siblings and friends. It gave me renewed hope.
That hope was buoyed by news of the passage of an Autism Insurance Bill in both the State House and Senate (unanimously I might add) and a video-taped promise by our governor that he would pass the bill if it made it to his desk. Awareness is making a difference!
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Yesterday I had the great pleasure of meeting a scientist who has been working in the field of autism research for over 35 years. She was delving into solving this puzzle long before most people had even heard of autism. Dr. Helen Tager-Flusberg spoke to a small group of us who have been touched in some way by autism. We had been invited to see firsthand where the dollars go and how they are used. She spoke of her ongoing research, concurrently studying the receptive language of non-verbal children and the infant siblings of children with autism. Her enthusiasm, even after 35 years in the field, is infectious. She is still eager to learn, to discover. I could feel myself get excited for the research she was doing, thinking, “gee, I wish I were 22 years old again so I could apply to graduate school and come work with her!” But the most joyful part of my experience of meeting Dr. Tager-Flusberg and touring her lab, was seeing the fire and energy of those that worked for her. These young women are the future of autism research, they are excited by what they are doing and they quite obviously knew their stuff.
It was somewhat bitter-sweet to see this because much of what they do will more directly help those that come after me and my little Brooke, but there are bound to be some things that come out of their research that will help all people on the spectrum, whether it is directly or indirectly.
I walked out of the meeting with renewed strength. Autism will continue to takes its swipes at me, of that I have no doubt. The private tears will continue to be shed, but my resolve to help has been hardened. I can feel that resolve bleeding into other aspects of my life as well.
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I have long compared our family’s personal journey with autism as a marathon, not a sprint. This was long before I started running regularly. A year after Brooke started receiving therapies to help her cope and communicate better with the world, I said that we were no longer crawling a marathon, we were walking. We still have a very long way to go, but we are walking. Her progress has been phenomenal, but it has had its up and downs. We will often take 3 steps forward, 4 steps backward and then 2 step forward again. A painful but ultimately positive path.
***
What does this have to do with running? with my preparation for Smuttynose? With my troublesome knee?
2 days ago, I sat looking at my knee. I’m pretty sure it’s not a joint issue per se. I pulled, possibly ripped, something over a year ago in my hamstring. Something actually popped behind my knee. The doctors never found anything, but it’s never been quite the same. 3 marathons, 4 half-marathon and several shorter races later, I am faster and stronger overall, but my knee hurts. 2 days ago, I wondered how I was going to deal with this. 2 days ago, emotionally hammered by the recent trials of autism, I wondered what I was doing. Why was I running? Smuttynose is 10 weeks away. New York, 15.
After the event of the last two days and speaking to Mark and seeing his enthusiasm about my running for Autism Speaks this November, the purpose became clearer. I need to do what’s right to be ready to run in October and November. Maybe these last few days were about not having to be in denial to have hope? Maybe one doesn’t need to be Pollyanna to be positive? I don’t know.
What I can tell you is that after the Kick-Off and after my tour of Dr. Tager-Flusberg’s laboratory, the pain I have been ignoring (both autism and the knee), have my full attention again. The focus is back. I’m going to take a week and really let the knee heal through real rest, massage and stretching. How else this is going to manifest itself over the next 3 months, I am not sure, but I want to thank Mark Roithmayr, Erica Giunta, Kelley Borer, Christine Pecorella, Dr. Tager-Flusberg and the rest of the Autism Speaks team for helping me regain my footing.
Run Luau Run 
Amazing post…you and your family are such an inspiration.
I hope the knee heals fast so you can get back to your training!
Thanks Nina! Hopefully with some smart stretching and massage I can get back on track quickly!
DMSO – for knees. Not FDA approved, but miraculous stuff nonetheless,
Know that you’re not the only one that’s tired and sheds tears in private. At some point in our lives we are faced with challenges. It’s how we respond to them that demonstrates our character and and leads to self discovery. Keep those smiles coming, even if they feel less genuine. The ones you get in return can make a huge difference. You’re in my thoughts, Matt.
“Keep those smiles coming, even if they feel less genuine. The ones you get in return can make a huge difference.” A good reminder Drew! Thank you!
Luau, I point out to you a twitter convo we had a few weeks ago after I tweeted my annoyance w/myself about not getting up early enough to run before the long list of things I had to do. Your message? Obviously you needed the sleep. Yep. You and your family have been so transparent in sharing with us your running trials and your experiences with autism. That is a gift, but when all is said and done there are four of you, four spirits and eight knees. I don’t know what the answer is to your knee conundrum, but want to encourage you to remember that in the long run you only have to answer to yourself, your spouse, and your beautiful girls (and whatever higher power you feel is behind you). You inspire us weekly; I am glad you found some inspiration in the researcher you spoke to.
Thanks Paula! It’s funny how sometimes we don’t heed our own advice until we hear from someone else!
Luau, this made me cry. I know that wasn’t your intention but just knowing everything you are going through with Brooke and adding to the fact that you are running, fundraising and sharing this with all of us is just overwhelming to me. I don’t know how I would be in your situation but I like to hope that if I had half of the spirit and determination your family has, I would be okay. Your love for not only Brooke but for the entire family and your desire to do everything in your power for them is so clear in every post you write. Remember whenever you need someone to help you take that next step forward, prop you up while you catch your breath or solve a nagging issue that we are all here for you.
I feel very lucky (and inspired) to have met you while I was in Boston. Good luck over the coming weeks- I know you’ll kick some serious ass.
I am so happy when I get to meet my dailymile and twitter friends in real life (like we did when you were here) and I find out that they are just as awesome in the real world as in the virtual one! I am thankful that you are part of both!
My dear Luau, I haven’t been reading your posts lately but today I decided to begin reading again. I’m glad I read this. Altough I don’t have autism in my family I’m quite aware of the toll it takes in the families that have it because my wife works as a fund raiser for a foundation that helps families that can’t pay a proper education for their children with autism. I’ve heard all kinds of testimonies and my wife always tries to teach me new things.
With your post I have decided to run Monterrey marathon next december and raise money for the autism foundation my wife works for. I thank you for sharing your heart with your readers. You are not alone my friend, keep on swimming….
That’s awesome Jorge! I am glad that you are doing that. The more we do now, while these children are young, the easier it will be not only for them but for those around them when they have grown!
You and your family are quite incredible. I am so glad to know you Matt.
I hope your knee starts feeling better man!!!!
The feeling is mutual sister!
Luau, you know we have both the marathon running and autism in the family in common, so I can appreciate your concerns on both fronts. Every family dealing with autism needs the silver-lining persona, the one who maintains optimism, sees the bright side, and has high hopes for the future, so please don’t lose that. And I do hope you are able to work through your knee issues and that the rest and stretching helps you recover and meet your goals for the fall.
My wife is a pediatrician, and it is amazing how little even those who are professionally trained know about autism. She is taking on a bigger role in training others on developmental screening to better identify autistic tendencies, and some day may get more involved in setting up autism therapy services (after she achieves her goals in the education department). It is a challenging condition to understand and to work with because every child is different, but the resources dedicated to finding better therapeutic methods continue to grow, largely through the efforts of those such as yourself who help raise awareness and funding for research. Keep doing what you do – I hope to join it more actively in the future (though, right now, I’m generally the one doing more of the therapy with my son, so I focus my energies there).
Thanks Greg! It can be both empowering and bittersweet when we find those that walk the same path as we do…I am glad that our paths have crossed.
Matt, You’re the best! I hope your knee recovers in time for NYC. BTW, I’d be happy to tell you about my own research sometime.
I want to hear about it!
Definitely!
Lump in the my throat, Luau… This is a beautiful post.
We’re in this together, babe. No one – not even you – can be upbeat ALL THE TIME. This life isn’t always easy. But we’ll get through it. Together.
heartfelt and emotionally open, not what I had anticipated, but certainly appreciated and welcomed. I never ask my husband what he does with his pain-the austism slaps, guess I will now. I am an avid reader of Jess’ blog, now it looks like I have someone else to read. Thank-you.
Sheila, ya know, the Celtic fanatic:)
Luau, thanks for sharing this with us. Not only the inspiration you felt from recent events, but your pain and vulnerability, too. I think it’s important for people to know that the fear, sadness and pain we feel for our children can coexist with strength, determination and appreciation for the gifts of life.
A beautiful and inspiring post. I was not a runner but decided in honor on my son (and to finally do something for myself) I am training and running in the Flutie Foundation 5K this October. My son’s autism has taken many demands on my time this summer and I have been too tired (mentally and physically) to run. Your post reminded me to take the break I need and get back to it when I can. Thank you.
Luau, I am a faithful follower of your lovely wife’s blog, and I am here because of her referral on Facebook. Our three-year-old daughter is also struggling with her autism, and your family is such an inspiration to us. Sending lots of good wishes your way…like you said, your family’s marathon is ultimately making positive strides. I understand that it can be daunting sometimes, especially since I’m also the look-on-the-bright-side one in my family. Sometimes I think it hits me harder when I have my moments because I’m usually *so* focused on the positive. Good luck with your knee and your training. I’m sure Team Umizoomi will do fabulous things.
Thank you for sharing your emotions, Luau. It is so wonderful to see a couple working together to keep their family strong. Bless you all.
Matt,
This post was so poignant and so real.
Just know how much loved you are. As always, we’re rooting for you, Brooke, Katie and Jess.
Love you all,
Mom
Luau, thank you for this post. I am a regular reader of Jess’ blog and followed her link posted on facebook to read this. I enjoy your writing and (like Jess, I really do not like running) I can certainly relate well to the need to sometimes reflect on the bigger picture – yes, having a child with autism is a marathon journey, and sometimes the resolve and the passion suffers from that (sometimes literal in my case with my son) slap in the face – so being re-inspired can be exactly what I need to keep going, or like you, to take a break of sorts to help me get back up. I hope your week of resting your knee brings you healing, in all the ways that a person can heal.
What an inspired and profound post! It was awesome seeing you 2 days in a row and sharing those experiences with you. Thank you so much for sharing your thoughts, feelings, and perspective with the world. 🙂
Luau,
I share you pain (autism & physical). It wasn’t until this past week that I too was able to bounce back into a groove and focus on why I am running. Having joined the OAR team for Chicago I have been primarily focused on fund raising. During last week’s 10k I had a moment where I realized what I was doing. I have to keep reminding myself that Noah is that emphasis behind me, pushing me to finish and finish strong. I enjoy running, and even sometimes through the foot/knee pains, but when I forget that I have a son on the spectrum I am only putting in miles. I know too well the struggles of a child with autism, and I too am the perpetual positive thinker in the house – know that you are not alone. Push forward, keep that positive attitude, and love that child even when it hurts.