Run Luau Run

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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.

***

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.

***

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!

***

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.

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