autism | Run Luau Run

Posts Tagged ‘autism’

Service

Posted in other, tagged autism, running, soldier, spouse on December 8, 2010| 5 Comments »

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On Saturday night, Jess and I decided to forgo our regular date night. Instead, we, along with Katie and Brooke, traveled an hour and a half away to a attend a party for a man we had never met or spoken to. No, this was not a family obligation. This party was to celebrate the safe return of the husband of a blogiverse friend of my wife. He had spent the past year serving in Afghanistan. Jess’ friend had no idea we were coming. She had no reason to expect us to come. In fact, she and Jess hardly know each other (they had never met or spoken to each other), but to a degree, that wasn’t the point.

This family is an ordinary family like yours or mine. Like mine, they have two children. Like mine, they have a daughter on the Autism Spectrum. UNLIKE my family, they made it through this last year with one parent serving our country in Afghanistan. Sergeant Major William is a proud member of the National Guard. He is an ordinary guy doing the extraordinary. I am extremely grateful for what the Sergeant Major does. I am always floored by the men and women who are willing to put their lives on the line for me. Because of Sergeant Major William, and the rest of the members of our armed forces, I get to do what I do. I get to be a stay-at-home-dad. I get to run marathons. I get to write this silly, little blog. No matter where you stand on the political spectrum, I think it is important to show gratitude and respect for our soldiers. They are heroes.

But I don’t view Sergeant Major William as the only hero in his family. His wife Rachel, along with many of our servicemen’s spouses, have spent the last year home, alone, going to bed every night wondering if their soldier is going to be okay. Add raising a child on the spectrum and the pressure mounts. I believe Rachel, and spouses like her, deserve recognition for the sacrifices they make so that we can send our soldiers overseas, so that we can do what we do, whether it be running marathons or vegging on the couch or whatever the heart desires.

For a more in-depth description of the party, please check out Jess’ blog post —>HERE<—.

We have Veterans’ Day every year in November. I propose we take today, December 8th, to thank the Rachel’s, Jeneil’s, and every other military spouse who hold the hearts of our soldiers – a Veterans’ Spouse’s Day.

What does this have to do with running? Nothing…and everything.

Why do you run?

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Butterflies & Hurricanes

Posted in health, Odd Ball, other, training, tagged autism, chaos theory, Injury, running on November 22, 2010| 10 Comments »

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In recent months Brooke has struggled with her environment. The Fall transition has not been particularly easy. Brooke’s autism is infused with pervasive anxiety. Over the last several months, her anxiety levels have increased just ever so slightly, leading small trickles to compound into crashing waves when the environmental conditions are just so. A baby’s cry, a child calling for its mama, or even big sister Katie sniffing because of a runny nose – all these things can lead to meltdown.

Little things becoming big ones.

Glitches becoming catastrophes.

Jess and I are working hard to anticipate and re-direct, attempting to keep those trickles as just that…sometimes with success, sometimes in vain. We’ve learned to identify some, but not all, of what induces the paralyzing anxiety.

I tell people that being the parent of a child with autism has made me a better father, a better husband, a better man. You learn patience. You learn compassion. You learn to suck it up.

***

What I never thought, was that being a parent of an autistic child would make me a better runner. Brooke has taught me perseverance, tenacity, and drive. She wants to be able to break through her walls. The perfect example is when she insisted we get a dog – this despite the fact that she was deathly afraid of them. We spent the first three weeks of having a dog with Brooke’s feet never touching the ground when our dog was in the same room. Today, she has overcome that fear and now loves dogs. I mean she LOVES dogs! Perseverance, tenacity and drive – I used all of those things at both the Smuttynose AND New York City Marathons. In one race I used those lessons to cruise to personal victory, in the other I used them simply to survive.

Something else I did not realize until recently that I learned from Brooke as it relates to running was anticipation. I don’t meant the “licking you chops can’t wait for this dinner” kind of anticipation. No, I mean preventative anticipation, defensive anticipation. As runners we can often be hyper-focused on the training at hand. We will pay close attention to the pace, the distance, the training, but if presented with a niggling pain we will brush it off as just part of the training. Much of the time, that is just what it is, but how often have you suffered an injury and in retrospect known exactly when it happened? Prevention is much more powerful than reaction. The time spent ahead of the curve packs so much more wallop than time spent recovering from disaster. We (I) need to learn to anticipate which of those niggles are an indication of more to come.

In Chaos Theory there is something called the Butterfly Effect. Put in very, VERY simple terms, the idea is that in a closed system (like our planet’s environment or our bodies) we are all connected. Because of that intra-connection (and explained with a lot of high level math I don’t pretend to understand) the flutter of a butterfly’s wing in Brazil can initiate events in our atmosphere that eventually lead to a class 5 hurricane off the coast of South Carolina. The problem of course is that the math is so complex that in the end, the connections seems to be random, chaotic. Trying to determine which butterfly’s wing will cause the next Hurricane Andrew is practically impossible.

The math isn’t quite as complex when it comes to our running and our bodies. I am learning to filter out the normal aches and pains of running and focus on those that feel like they could be more serious; those that could be evil butterflies.

***

Watching my little Brooke recently, I’ve seen the little things that set off a chain of events leading to disaster. Our (Jess & my) job is to attempt to anticipate which little things, which butterflies will cause the hurricane. Sometimes it’s a single event; sometimes, like many pebbles thrown into a once calm pond, it is many events. The difficulty is knowing which pebbles to catch and which butterfly to squish.

***

Awareness makes us better people, in all things. The more we know, the more likely we can manage to stay calm in the face of adversity, the more likely we make the choices that lead to a desired ending.

Whether it’s protecting my little one or protecting my body from injury, it’s about looking out for the “right” butterfly – and squishing it.

Why do you run?

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Speak up for those who can’t

Posted in other, tagged abuse, autism, Huffington Post, kim stagliano on August 23, 2010| 5 Comments »

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I often talk about the importance of running. How it is a wonder drug, a stress reliever, a life saver. Running is, aside from my family, a prime focus of my life. But sometimes, things happen that make you realize just how trivial something like a quest to qualify for Boston can be.

Recently a friend of my wife’s went through (is going through) the nightmare that every parent fears. Her 9-year-old, pre-verbal, autistic daughter was repeatedly abused physically by her bus driver. This 24 year-old woman would smile at my wife’s friend while driving away saying, “Bye Mom”, simultaneously twisting her daughter’s fingers to the point of spraining them.

The wife does a much better job articulating what we can do here:

http://adiaryofamom.wordpress.com/2010/08/23/stories-for-another-day/

and her friend’s story is on Huff Po here:

http://www.huffingtonpost.com/kim-stagliano/post_701_b_685954.html

We all don’t agree on the causes of autism, but I do think that we can all agree that there is no excuse for abusing children. Please take the time to read the wife’s post, but more importantly, take a moment to read Kim’s post and leave a comment. The more comments her post receives, the more likely it will reach the front page of the Huffington Post.

As the wife said:

If enough of us read it (and comment on it!), we’ll get that damned thing to the front page. In so doing, we’ll shine a light on the desperate need to safeguard these vulnerable kids. We’ll make a public statement that we WILL NOT ABIDE by the abuse of our precious babies – whether our babies are two or forty-two. We will declare this atrocity quite simply INTOLERABLE.

Whether it’s my post, the wife’s post, or Kim’s post, please pass this along. Please help speak for those who can’t.

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Be Selfish

Posted in health, motivation, other, rest, tagged autism, mental health, physical health, running, Selfish on August 2, 2010| 8 Comments »

This post was inspired in part by akbutler. (You will run that 5K!)

That’s right.

Be selfish.

I don’t mean cut people off in line or swipe the last food item without asking. I don’t mean hoard all of the ice cream, talk without listening, or think only about yourself.

What I do mean is go out for that long run, go to that gym class, schedule that massage, meet your girlfriend for a manicure and pedicure, book that haircut with your hairdresser, and occasionally, eat your cake too! And don’t feel guilty about it! (Unless you are one of those people who ONLY does those things…then I’m not talking to you.)

I think that people who work very hard taking care of others very often forget to take care of themselves. I see it in the eyes of my wife and others who spend so much time tending to the special needs of their children, siblings or parents.

The focus.

The Go-Go-Go.

The exhaustion!

Even when a particular need is met, there is often still a mountain of needs that are waiting to be taken care of.

No time to rest. Must get to the next task!

But what we all need to remember, that in some cases, being selfish is the most selfless thing you can do. By taking care of yourself, you are better prepared, better able to deal with the challenges that you face. It allows you to be more than just there.

Taking care of yourself could be getting some sleep, getting a run in, or maybe even something simply cosmetic like getting your hair done. It’s important. It’s important because if you don’t do it, you’re gonna crash and be useless. Who can take better care of the ones you love better than you? No one, except a rested you.

There’s a problem of course. There are only 24 hours in a day. Those hours can come and go very quickly.

When, Luau, when am I supposed to be able to do these things for myself? I hear ya. I really do. Let me pose it a little differently with an unrelated short story:

Many years ago, the wife and I were struggling with a recommendation from a doctor regarding little Brooke. I won’t get into specifics, but suffice it to say that it was a very difficult decision that took a lot of soul searching. We kept asking ourselves, what happens if we do this? What are the possible negatives going forward? In the end, and I can’t remember whether it was the wife or I who came up with it, but we flipped it and asked ourselves, “what is the price if we don’t?” Once we approached it from this perspective, our path was clear.

So I ask you this. What is the consequence if you don’t somehow find the time to take care of yourself, both short-term and long-term? And if you ultimately break down, who will be there to take care of those you have been working so hard to take care of?

I am selfish about my running. 4 – 6 hours a week. Those 4 -6 hour are mine and no one else’s. Sometimes it’s 90 minutes at 4:30 in the morning, sometimes it’s 2 hours starting at 11:00 at night. If I’m lucky, I get a lunchtime run in. It keeps me up even when the world conspires to bring me down, but it also contributes to hopefully keeping me around for at least another 50 – 60 years. If I can be relatively sharp-minded and able-bodied until I’m 90, Brooke will have me around until she’s almost 60. Hopefully by then she won’t need me the way she needs me now. That is why I am selfish.

What do you need to be selfish about?

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Ignoring Pain

Posted in motivation, New York City Marathon, other, rest, tagged autism, Autism Speaks, Healing, knee, marathon, pain, running on July 30, 2010| 29 Comments »

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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.

***

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.

***

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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Thank You

Posted in motivation, New York City Marathon, other, tagged autism, Autism Speaks, friends, fund raising, ING New York City Marathon, running, Thank you on July 22, 2010| 6 Comments »

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A little over a month ago I asked for your help.

I asked you to help me help my little Brooke and all the families out there affected by autism. I asked you to click

—>HERE<—

a link which takes you directly to my fund raising page for this year’s New York City Marathon.

I had committed to raising at least $2600.

I asked that you help support me as I tried to make the world just a little more aware, a little more understanding, a little more compassionate.

Out of my past and present you came. Out of the known and unknown you came. Friends, friends of friends, friends I have never met in the real world and total strangers. You all came, and in just a little over a month, took me over the initial goal of $2600.

I hope that this is not the end of my fund raising, but I wanted to make sure that I acknowledged, publicly, those that put me over the top and sent me to New York this coming November.

Thank you. I will think of each and every one of you as I journey through the five boroughs on November 7th,

The 2600 Club:

Alan Kessler, Andrew Vogel, Arthur Hsu, Bob Votapka, Grammy & Grandpa DD, Catherine Schembri, Christa Lind, Courtney Buie, Courntney Fredericks, Danielle Hair, Elizabeth Blecker, Eva LaBonte, Hugh Hallawell & Stinky, Ingrid & George, Jennifer Ethirveerasingam, Mo, Jack Wack, Jonathan Amir, Judith Ursitti, Kate Mead, Kevin Franck, Kim Borer, Cat Brown, Matt Geller, Michael Kim, Michelle “Miss Joy” Jacobs, Michelle Genin, Mollie Niess, Nancy De Sa, Rachel Thuemling, Randy Price, Rick Reilly, Roxanna Shershin, Russell Levine, Sarah Werner, Sarah Johnson, Stef Nathanson and Yigal Agam

I am in your debt.

I promise to run strong!

Thank you.

Although they do not appear on the list above, a special thank you must go to Blake Jones and Jonathan Harrington. Each of you in your own way have made a huge contribution to my fund raising goal and for that I am grateful.

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Help Me Help Brooke – 2010 ING New York City Marathon

Posted in motivation, other, tagged 2010, autism, Autism Speaks, Charity, ING New York City Marathon, NYC Marathon, running on June 15, 2010| 3 Comments »

My Little Brooke

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On November 7th, 2010 I will be running the ING New York City Marathon. It will be my 4th, possibly 5th, marathon, but it will be the first that I run representing a charity. I have chosen a charity that is very close to my heart – Autism Speaks. My daughter, Brooke, has autism. She was diagnosed over 3 years ago and when my wife and I were told the news, there was very little support out there. In the time since then, the tools and resources available to families with new diagnoses has come a very long way. Part of that is due in large part to the efforts of Autism Speaks.

They have been a tireless advocate of awareness, something both the wife and I strongly believe in.

Ignorance is the parent of fear and cruelty.

In an ignorant world, my daughter would have been called a brat, or willful child, or worse, stupid. In an ignorant world she would have been constantly punished for behavior that she is unable to control without assistance. In an ignorant world, my daughter may well have been looked upon with disapproval and judgement from both teachers and peers. Thanks in part to the efforts of Autism Speaks and charities like it, my daughter does not live in a world of ignorance. We may not be where we need to be yet, but we are on our way.

Awareness is the parent of understanding and compassion.

With awareness comes understanding which can eventually lead to compassion. I have been amazed how people have responded to my little Brooke once they know what she has to deal with on a daily basis. Once they understand that a room full of talking children can literally be a painful assault on her ears, or that trying to follow what a teacher is saying in class can be as if you were trying to understand a lecture on economics by a professor who spoke 4 out of 5 words in a language you didn’t understand, or that a simple, repetitive sound that you or I simply block out as white noise becomes an itch that she cannot possibly hope to scratch; once people understand this, their awareness quickly turns to compassion. People start looking out for Brooke because they know that in the end, she is just like any one of us, just a little different on how she perceives the world.

I believe that the more people I can make aware of autism and its effects on both those who have it and their families, the better the world will be when my little girl grows up. The wife and I have, from a very early point, been fairly public about autism, Brooke and our family. Not everyone chooses to “come out” if you will, and I have grown to accept and even understand that. By the same token, I feel that as long as autism is kept in a dark corner, hidden away as something to be ashamed of, then ignorance, fear and cruelty will continue to exist and grow.

Running for awareness.

And so I run. This November I will run to help push the boundaries of awareness. I will talk to anyone who asks about the lows and highs (yes, highs) of having a child on the autism spectrum. I will encourage people to speak loud and speak proud of their children or themselves. I will remind parents that no victory is too small to cheer and that no defeat is too large to throw in the towel.

Autism Speaks is a charity I respect and have a passion for. They do so much and work so hard to make the world a better place for my Brooke, for both today and tomorrow. But it’s not just my Brooklet that they are helping. Everyday a new family is devastated with the news that someone in their family, whether they are 3, 13 or 23 years old, has been diagnosed with autism. I have had many friends come to me over the past year asking questions and expressing concerns about their own children. With resources like the First 100 Days Kit, these families are now able to find the tools to help ease that initial pain and start moving in a positive direction.

So I am asking you to help me help my little Brooke and all the families out there affected by autism. You can do that by clicking

—>HERE<—

The link will take you directly to my fundraising page for this year’s New York City Marathon. I need to raise at least $2600. Much of the funds that Autism Speaks raises goes to research, but a portion of it also goes directly to grants that are reviewed by the parents of children with autism. They make an effort to make sure that the funds they distribute can benefit many of us directly. Autism Speaks is truly working to make the world a better place both today AND tomorrow. I know that many of you have helped me in the past when our family has done the Autism Speaks Walks. I am truly grateful for that, and I am asking for your help once again. Having learned to walk, it’s now time for me to run. I hope that you will support me as I try to make the world just a little more aware, a little more understanding, a little more compassionate.

Thank you so much.

Help Me Help Brooke To Fly

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The Magic of Santa

Posted in other, tagged autism, Blog Moms, Christmas, love, Magic, Magical, military families, runner's high, running, santa, Santa Claus on December 23, 2009| 9 Comments »

As runners, we often find ourselves chasing that ultimate feeling in running: the runner’s high – when our feet barely touch the ground and we feel as if we are flying through our workout. I achieved that high this weekend, but it came from a completely unexpected source.

I first met Rhema and Hope here. I met them through the incredible network of blog moms that my wife is a part of. I then met them in real life when we had the wonderful opportunity to have the two of them and their parents over to our house. Their dad Brandon is a soldier stationed in Iraq doing what he does so that I have the privilege of being a stay at home dad. Their mom Jeneil and Jess (my wife) are part of an incredibly diverse group of strong, intelligent, caring women who were united by the common bond of autism, but now share so much more. You check out each and every one of these great women by linking to them through Jess’ blog roll.

I can only imagine what our military families go through during the holidays when a spouse is stationed overseas. With that in mind, we asked Jeneil if it would be okay for our family to bring a little Christmas early to their home.

Jeneil’s older daughter’s autism is very different than my daughter’s. I have never heard Rhema speak a word and I have never been sure that she noticed whether I was in the room or not.

That was until last weekend when our family went to their house with me dressed like this:

Little Hope was in shock that Santa had decided to stop by and make an appearance in her home.

After opening up a few presents and sitting on my, er Santa’s lap for a few minutes

she went off and made me, er Santa, a half a dozen beautiful drawings.

But the real magic happened on the way out. Rhema had been playing with her presents, giving little if any notice to Santa. But as I got up to leave, she came over to me, threw her arms around my shoulders, climbed up like a koala and wouldn’t let go. She looked me right in the eye as if to say, “you can’t go yet, Santa!”.