Sunday, May 26, 2013

A Strong Autism Community Speaks for All of Us

Heart racing. Palms sweating. Words trying to make their way out of my mouth. I suddenly felt as if I could understand my son Mikey’s struggles to communicate. Looking out at the strange faces (full of expectant looks of anticipation) looking back at me, made me realize just how uncomfortable a situation like this could seem to him and other autistic children.

I was standing in front of an audience of about 400 people who were waiting for me to deliver a speech about autism. I had been honored to be asked to address the Young Autism Program’s annual charity dinner event, but I’m a writer…not a public speaker. Hence the knee-knocking fear surging through my body as I stood at the podium (which was already an accomplishment, as I had bet that I’d trip up the stairs on my way to the stage).

But three things rescued me from the fear. One, as with many challenges I’ve faced as an autism parent, I found an inner strength I didn't know I had. Two, I got a laugh after my first joke. And three, I was surrounded by that unique, uplifting strength that only the autism community can provide. I opened my mouth and began to read my speech…seventeen minutes later there were tears, laughter, and applause.

That charity dinner event took place just a few days after the end of Autism Awareness Month. My speech was about being an autism parent but, more importantly, about the necessity of the autism community to support each other year-round. The reaction to my speech spoke volumes about how we all share this common journey on the road of autism and that sharing our experiences is a valuable, comforting, and sometimes inspiring exercise.

Rollo May, a psychologist, said “Communication leads to community, that is, to understanding, intimacy and mutual valuing.” When we have events like this dinner or an autism awareness month, or even just a couple of parents sharing stories outside their children’s school, we are acting as a community and creating understanding and the value our children deserve.

Many of our children, family, and friends with autism cannot speak for themselves. And that is where a strong community comes in…it speaks (through words and actions) on behalf of those who can’t. When you stand up for your child’s needs at their IEP meeting, join an organization like the Autism Society, or donate to a local autism charity, you are speaking for someone with autism.

Let’s all strive to be a voice in the autism community. I can guarantee you that it is the most rewarding feeling you’ll ever have. And if you ever find yourself petrified and afraid in front of hundreds of people hanging on your every word, tell a good joke and remember these beautiful words of wisdom: Speak your mind even if your voice shakes (Maggie Kuhn, Social Activist).

Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
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Wednesday, May 8, 2013

Transcript of Speech at the Young Autism Program Charity Dinner/Dance - May 3rd, 2013

On Friday, May 3rd, I was honored to give the following speech during the Young Autism Program's (YAP) annual dinner/dance at the Crest Hollow Country Club. Links to the videos of this speech follow the text.


Thank you very much. It is great to be here with all of you. My son, Mikey, was a YAP student for three years, and I’m happy to see that the Young Autism Program is still going strong. I want to thank Kathleen Prunty, Nicole Shea, and YAP for inviting me to speak at the annual Dinner/Dance. It is truly an honor.

I address you tonight as a YAP alumnus, contributing blogger for the Autism Society, and most of all, member of that very special community: The autism parent. Yes, we are a special breed. You know us by our bloodshot eyes and haggard look. By our expert use of the expressions, “No, he doesn’t need a menu, he’s on a special diet” or the ever popular, “Use your words.” You also know us by our unwavering, deeply devoted love of our children with autism and the fire in our hearts when it comes to making sure our children get the services they need in the wake of this growing epidemic. 

When I was born, in 1966, the rate of autism was about 1 in 10,000 or so. Since my son Mikey was born in 2005, the rate has gone from 1 in 150, to 1 in 110, to 1 in 88, and now, according to some studies, 1 in 40. Now, I’ll pause a second for you to consider that shocking number... Yes, it is true, I am 46 years old. 

Prior to Mikey’s diagnosis at 20 months, I was basically clueless about autism. My wife, Lynne, and I were just getting used to being parents and now we were going to be AUTISM parents...and I didn’t even know what that meant. I only knew that I felt incredibly scared, deeply sad, and extremely lost. 

The first thing I did was to dive into reading everything I could about autism. I can tell you, now, how big a mistake that was. First, I read about how Mikey’s autism was my fault. Then, I read that it was my wife’s fault. I even saw one article that said it was because we let Mikey watch TV before he was two years old. If there was some ridiculous reason to blame for Mikey’s autism, it was covered in every crazy theory I read. Finally, the saving grace for my sanity and, most of all, for Mikey’s well-being was DDI and with that, the Young Autism Program. 

Previously unsure of what we should be doing to help Mikey, his acceptance to DDI, and our subsequent involvement in YAP, were the best things that could have happened for all of us. We were extremely happy to have the help and guidance of the amazing professionals at DDI. And the community of autism families from the Young Autism Program made us feel a little less alone. It helped that Mikey took right away to being in a classroom environment, and it didn’t hurt that he immediately fell in love with one of his TA’s. He may not be a silver-tongued devil, but my son is a big-time playa with the ladies. 

There’s an old African proverb (and Hillary Clinton book title) that says, “It takes a village to raise a child.” When it comes to autism, this is absolutely true. I offer up that organizations like YAP and DDI are our village. Look around you. Here are your tribesmen. And the best thing we can do for our children is to make sure our village stays strong. With a poor economy and budget cuts everywhere, it falls to all of us to help ensure the survival of something so valuable, nurturing, and communal. Over the past few years there are two things I’ve learned for sure: First, 80% of my DVR space will always belong to Mikey’s cartoons, and second, you can’t face autism alone. 

It is with that philosophy in mind that I approach the monthly columns I’ve been so honored to write for the Autism Society’s blog. My goal is to share my observations from the viewpoint of an Autism Dad, pass along any tips I’ve learned from my time at YAP, and express the day-to-day joys and challenges of raising a child with autism. I’d like to share with you now three of my columns that express a spectrum of feelings and experiences I’ve had on my journey as an Autism Dad. 

The month of April, Autism Awareness Month, has just ended. I’d like to read to you my most recent column from last month, which is titled “A Daily Reality for Those Touched by Autism.” 

A Daily Reality for Those Touched by Autism

The month of April is upon us once again. The fourth month of the year is my son Mikey’s birthday and also National Autism Awareness Month. The former a happy, celebratory occasion; the latter a sobering reminder.

After the pomp and circumstance of World Autism Awareness Day and this National Autism Awareness Month ends, the reality will be that my son Mikey and almost two million others like him will still be on the autism spectrum. While I agree for the need, and support having these calls for awareness, I wish the coverage of how autism impacts a child and their family could look less like the “morning news” and more like the “documentary channel.” 

Since autism spans a spectrum of symptoms and behaviors, not everyone experiences it the same way. Some children with autism seem to be quite typical, while others are very obviously struggling. The same goes for the families and friends of these children who see their lives completely impacted by the world of autism. 

With that in mind, creating a detailed and complete awareness of autism would most likely be quite challenging. And, honestly, some might not be strong enough or, sadly, interested enough to know the deep truths: 

How many people would be able to watch a child cry and be devastated by their failed attempts to communicate or complete a simple task as they are repeatedly hindered by OCD or echolalia? How many could watch parents deal with the guilt of thinking they caused their child’s autism or the doubts caused by the questions of what to try next for their child when all else has failed? How many could truly understand just how much time and money it costs to even make an attempt to help your child with therapies, diets, and other unproven programs? 

Do they want the real awareness of autism? Do they want to know about how many times today I tried to communicate with Mikey only to hear TV show talk or a generic “yes” as the reply? Do they want to know the frustration of feeding your child popcorn, cheese doodles, and peanut butter because those are the ONLY THREE THINGS they’ll eat? Do they want to know how many soiled pull-ups my wife and I have changed this week because the concept of potty training is a constant attempt at futility? 

I truly don’t know if any of those answers would be yes. With most awareness campaigns like this the general public seems more open to just throwing some money the way of the cause and then going on with their regular lives without actually being educated about the subject. I can understand that. I really can. And it is hard to blame them. The real truth is never pretty. 

I think what I truly want from an Autism Awareness Month extends beyond facts about how many cases are diagnosed and where people can donate to help. No, what I really want is for people to know that our children with autism are really amazing kids who go through incredible struggles every day. I want the public to know that autism parents don’t want you to pity them or their children, but only to understand just how deeply love and respect are important to the autism community. I want the world to know that after April ends, and the TV cameras turn their attention somewhere else, well, we’re still here and we’re VERY much aware of autism. That fact is true, 24 hours a day, seven days a week, TWELVE months a year. 
…
In my time as an autism parent I’ve learned so much about being a dad and have been exposed to many incredible people. For instance, the Mother Warrior Autism Mom. That experience lead to a column I called, “‘Mother Warriors’ Scare the Heck Outta Me (And Other Tales of an Autism Dad).”

“Mother Warriors” Scare the Heck Outta Me (And Other Tales of an Autism Dad)

The first time I ever heard the expression “Mother Warriors,” I half expected to see a pink tank rolling down the street or perhaps a platoon of women in designer fatigues with daisies sticking out of their rifle barrels. But then, after I let my out-of-control imagination subside, I was able to see the true strength and power of these ferociously focused females.

Over the past few years since Mikey’s diagnosis, I’ve experienced the phenomenon of the Mother Warrior Autism Mom and the, oftentimes ignored, Autism Dad. Being an Autism Dad is one of the most challenging things a man can experience and requires a life-altering transformation. 

The Mother Warriors I’ve come across transcend the traditional nurturing role of a mommy to seize the warrior spirit that lets them become relentless in their drive to get whatever their child needs to thrive. The ironic thing is that the Autism Dad needs to shed his traditional male trait of being warrior-minded. No, the Autism Dad requires much more patience, tenderness, and love than typical of a warrior. Instead, our battle needs to be against our natural inclinations. 

Let me pause for a minute to be clear about the need for patience. The patience I’m talking about is well beyond what most people would imagine. No, for those of us in the Autism Dads Club, I’m talking about the type of patience usually attributed to a saint. Saint Autism Dad needs to take a deep breath when his child throws his food on the floor for the fifth time in a row. He needs to turn the other cheek when his child’s humming stim rivals that of a thousand bees in his ear. He must speak softly and calmly when his actual urge is to scream and yell. I know your struggle, Autism Dads, but, if we try hard enough, perhaps one day we will all be canonized. 

Now, watching Mother Warriors form a group or battle a school board shows the natural female ability to be organized and come together as a group. Men really don't organize. When men organize it usually turns into a political party...and we all know how successful they are. No, men just want to get to fixing things. How can we fix autism? Is there a tool for it? How about a little WD-40 or some duct tape? 

I learned early on as an Autism Dad that it’s not about fixing…it’s about giving. An Autism Dad has to give all of himself to his child. You can’t hold back any attention, any compassion, any understanding, and most of all, any love. Not an easy task for most men who tend to hide their emotions. 

I was fortunate to learn how to be an Autism Dad because of the silver lining of a dark, dark cloud. I was unemployed for almost two straight years right at the time when Mikey was diagnosed. I basically became that classic Michael Keaton character, “Mr. Mom,” and was able to spend an incredible amount of time with Mikey. We learned so much from each other during those tough times and dedicating myself to Mikey truly kept me from falling into a deep depression. My biggest smiles of the day were picking Mikey up from DDI and then a little later in the day when my wife would walk in from work. My family was my foundation and Mikey my inspiration. 

Being an Autism Dad has helped me to fine-tune natural skills I had, and to develop new skills that I never thought I’d need. For instance, taking Mikey to t-ball and soccer is second nature to me…I had waited my entire life to be a sports dad. But asking people for money while fundraising for an autism charity…that was so out of my comfort zone. The bottom line, though, is whether I’m helping Mikey throw a baseball, or raising money for charity, it’s all with the single focus of helping my child overcome autism. 

So, my advice for new Autism Dads, or for dads who haven’t quite figured out the whole approach to having an autistic child, is to embrace everything there is about your child and their special needs. Go to their doctor appointments, be a part of their therapy sessions, go to their schools, get involved with autism charities like YAP, read about autism, and be prepared for anything your child needs. Preparedness is the way to win a battle. Just ask a Mother Warrior. 
…
I’d like to close tonight by reading my very first column for the Autism Society from June 2011. This one is titled, “My Songbird Sings the Truth.”

My Songbird Sings the Truth

“Every little thing is gonna be all right,” Mikey sings as he runs down the hall with a big smile on his face. The sound is pure heaven to me and I feel myself grinning from ear to ear.

Bob Marley’s song “Three Little Birds” is more commonly known from the line that Mikey has made so adorable: “Cause every little thing gonna be all right.”The song appears in a children’s video that plays during one of Mikey’s TV shows and it has fast become his favorite video to watch. 

As any parent of a child with autism can attest, any words that come out of your child’s mouth are heartwarming miracles. Mikey started singing this song the other day and at first it was just adorable and cute, but then after I listened closely and read the lyrics of the song, I felt so uplifted and saw it as if Mikey was really speaking to me. 

“Don’t worry about a thing” 

When it comes to Mikey, my normal reaction is to worry…about everything. I would do anything to help him with his autism and I do everything I can to make him feel happy and loved. As I think of that line I realize I need to stop worrying about the things I can’t change. 

“Rise up this mornin’/Smiled with the risin’ sun” 

One of the best sounds in the morning is to hear Mikey wake up singing. I can’t think of a better way to start the day and this line makes me remember to cherish that sound. 

“Three little birds/Pitch by my doorstep/Singin’ sweet songs/Of melodies pure and true” 

Mikey is my little songbird. Most of the time his speech is littered with echolalia and gibberish, but it’s those times, those sweet, sweet times, when he says a word or phrase perfectly, or, when he sings—those are the most pure melodies of truth I can ever hear. For every grunt or whine there are those infrequent times of joy when I hear “I luff you,” and then, then all is right with the world. 

“Sayin’, this is my message to you-ou-ou” 

I hear you speaking to me, Mikey. I do. My ears and my heart are wide open. And I can’t wait until the day you can tell me every single thought in your head. I’ll be forever listening to your sweet, sweet songs. 

Thank you very much for listening to me tonight. Please continue to support the Young Autism Program. And enjoy the rest of your evening. Good night.

The video of this speech is available at YouTube in two parts. Click here for Part One. Click here for Part Two.
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