Friday, December 25, 2015

Twelve Christmases - An Autism Dad’s Christmas Letter to His Son

Twelve Christmases ago, I hadn’t met you yet. My dearest Mikey, you were still in your Mommy’s belly and wouldn’t pop into our world for a few more months. To say you were more anticipated than any Christmas present ever would be an understatement.

Twelve Christmases ago, I would speak and sing to you as you grew in your mother’s loving womb. I looked forward to the next Christmas when you would be in my arms and I could show you everything this special season brings to life.

As the following year rolled around, you were finally here with us. I was in love the second I had laid eyes on you a few months earlier, and now it was your first real Christmas. I remember watching your eyes and your face as you stared at the Christmas tree and lights. As I still do today, I wondered what you were thinking and if you realized just how much love you inspire.

When the next Christmas came, you had me on the edge of my seat. Your still not perfect walking skills would lead you to the Christmas tree and no ornament (within your reach) was safe. Little did I know that chasing after you to keep you safe would become a huge part of my life. Do you remember me lifting you up to the top of the tree to show you the angel (and to distract you from the easily reached decorations at the bottom of the tree)? I still wonder what thoughts filled your mind about that.

Christmas of 2007 was the first of our newfound life. Your recent autism diagnosis had rocked and saddened our world. Everything was now being seen through an autism filter. Was your interest in the wrapping paper and not-so-much your presents because of your autism or just a child’s prerogative?  

Our attempt the following year to introduce you to Santa Claus, led to me having to chase you as you ran as far and as fast away from the Jolly One as you could. Now, Daddy was never a big fan of Santa (having learned the truth at a very early age), but your mommy and I couldn’t help but feel a little sad about your reaction. You see, we were new to the autism parenting world and every little “different” thing would make us wonder what we could do to help...or if we even could.

As the next few Christmases came and went, and you were getting excellent help at your developmental school, your mommy and I felt more confident and hopeful (not to mention exhausted and stressed). But we realized that you would always have your challenges and that a “typical” Christmas might not be in the cards.

Now, as you know, your daddy is stubborn and always optimistic when it comes to you and your battle with autism. But, the one amazing breakthrough, the best ever Christmas gift I could get, has still eluded me. In our 9th Christmas, daddy wrote “”Merry Christmas, Daddy!’ An Imagined Conversation with My Son.” Yes, a simple conversation with you is all I wanted (and still want). The scenario I imagined in that story is still a fantasy, but someday I know it will happen.

So, now here we are at Christmas 2015...our 12th with you filling our lives with joy. To our excitement, you’ve shown more of an interest in the holiday. You wanted to look at toys (or toyssszzz as you call them) for Santa to bring, Santa himself no longer terrifies you (although you still probably wouldn’t want to sit on his lap), and the Christmas tree and lights still gain your smiles and attraction (but with less of an urge to rip them off the tree).

We’ve just opened this year’s presents and the smile on your face was priceless. It was the kind of sight that gives mommy and daddy a warm feeling in their hearts and a little more confidence that they know how to keep you happy. Daddy is happy with his presents too, but my wish to have a conversation with you was still not among those gifts.

I believe with all my heart, that some day we will have that conversation (and many, many others) that I crave so much. Wishes made at Christmas just have to come true (I mean isn’t that what the twinkle in Santa’s eye is all about). Merry Christmas, Mikey! Daddy loves you.

Monday, April 6, 2015

A Boy Grows a Lot in Ten Years…So Does His Father

The mighty, giant Sequoia tree can grow to fifty feet, nearly half its mature height, in ten years. The light from our sun travels an unimaginable 58,656,960,000,000 miles in ten years. A child develops from an unborn, unknown anticipation to a giggling, lovable little boy. And a man can go from thinking he knew what life was all about and had it all figured out, to a mature, devoted father who can think of no other greatness than to be his little boy’s loving, protecting daddy and best friend.

My Mikey is ten years old today. Typing that makes my hands shake. My little boy is ten. It seems like I can’t remember a time when Mikey wasn’t in my life. I don’t even remember what a day was like a decade ago without him. And I can’t imagine a day without seeing him smile.

As much as Mikey has grown in these ten years, he has helped me grow, too. When faced with having a child, many people say they’re scared and don't know if they're ready...I guess I may have felt that way, too. When a child is born you can either learn and adapt to being everything they need, or you can stay immature and clueless and see the horrible impact on your child. I chose to adapt and learn and, because of Mikey's special needs, I had to truly have a trial by fire. Mikey has made me a better man, by far. My gratitude to him is something I can only express in my everyday actions.

Sadly, something else that has grown in the last ten years has been the rate of autism. When Mikey was born the rate was 1 in 166 children. Today it is 1 in 68 and 1 in 44 boys. My past ten years of life with Mikey has also been a life with autism. I think if Mikey were typical my growth may have been slower, as I said, autism has a way of forcing you to get your act together.

As I celebrate Mikey's tenth birthday, I also look forward to the next ten years. What will they hold for Mikey and me and his mother. What will they hold for autism? I can direct Mikey's ten years by being a good daddy. And I can influence autism in my own way by being an advocate. In both ways, I expect--and will settle for nothing less--than positive, life-changing results.

And so I close by wishing my little buddy the bestest, coolest, Chuck E. Cheesiest birthday ever. I love you, Mikey!
-- Daddy

Friday, April 3, 2015

Buttons, ‘Bands & Blogs: 3 B’s for the 3 A’s of Autism (Awareness, Action & Acceptance)

When I was a young, rebellious lad in the ‘80s, I used to wear pin buttons on my denim jacket. There was the obligatory “PEACE” sign, one that said “Carpe Diem,” and one with Opus from the “Bloom County” comic strip, among others. I never wore a button I didn’t believe in, but I never felt a must-wear commitment to them.

Flash forward now some thirty years and you’ll find me wearing buttons again…but this time with a dedicated, unrelenting purpose: Autism awareness, action, and acceptance for my son, Mikey, and the thousands of other children and adults like him on the autism spectrum. The autism-related buttons I wear now are on my shirt, hat, or coat every single day…because autism is a daily factor in our lives and not something that is in focus for merely a month or a worldwide day. If I get one person to notice these buttons and stop to think about autism (or even better, want to get more involved) then I have widened our audience to the cause that much more.

Along with my buttons, I also wear several wristbands on a daily basis. There’s the “I Love Someone with Autism” wristband, the now-faded wristband for Mikey’s soccer/t-ball team for children with autism, the wristband for the local developmental school that Mikey attended and, of course, one for the Autism Society. I consider these wristbands, along with the buttons, to be part of my uniform as an autism advocate…call them my armor in the battle for the three A’s of autism.

Third in my autism trifecta are blogs. I’ve written all sorts of things throughout my life. I’ve been published in various ways and have seen my name in print a number of times. But none of those match up to when my heart takes over the writing and I create something about Mikey or about autism that really touches people. If I can’t move you with my actions, then I will surely try my best to move you with my words. If I could only write one more thing ever, I’d want it to be a blog that informed and inspired a multitude of people to learn about autism, accept our autistic children and adults for who they are, and caused them to help the autistic community in any way they needed.

As I think about it, I suppose I could add a fourth B for benefits. Throughout the year, and particularly in April, my wife and I attend or participate in autism-related dinners, walks, and other events. I’ve had the opportunity to give a keynote speech at a local autism charity’s fundraiser dinner, I’ve fundraised for several autism-awareness walks, and my wife and I attend other related events as often as possible. This is perhaps my favorite way to spread the word about autism because there are often like-minded individuals who are motivated by their love of a family member or friend who is on the spectrum.

My inspiration for these efforts is three-fold: Help Mikey and others like him in all ways possible; create autism awareness, acceptance, and action wherever and whenever possible; and, in the only admittedly selfish motivation, to overcome the helpless feeling that often overcomes me as an autism parent. For those moments that I look at Mikey and feel like I don’t have an answer, well, using the pay-it-forward concept, if my three B’s open the eyes to a curious stranger or assist another autism parent in some way, maybe someday they’ll return the favor and open my eyes to a solution I’m not seeing.

With the ever-increasing rate of autism diagnoses, the number of us touched in some way by autism is growing larger every year. To achieve the three A’s of autism, we need to spread our message in every way we can. My way is the three B’s. Perhaps yours are three D’s (donations, doctors, devotion), two T’s (teaching and therapy), or an F (fundraising). Whatever we call it, however we do it, this alphabet of letters will always spell LOVE.

Wednesday, March 18, 2015

Taking the Steps (4 Mile’s Worth) to Help Children w/Autism

The sunshine battled the cold wind for control of the morning, but despite the cool breeze, I felt a wave of warmth. I had turned the final curve and was closing in on my goal. My lungs ached, my breathing was rapid, and if the muscles in my legs could speak they would be saying very nasty things to me.

Chugging past my waiting family, I locked eyes with my wife. Her expression was a combination of pride and a worried "oh boy, he looks really tired." I then glanced up to see a giant clock ticking off the seconds. The number was a bit embarrassing to this old track athlete, so I pushed myself to walk a little faster.

As I crossed the finish line seconds later, dozens of strangers cheered and clapped and my name was announced over a loud speaker. A wave of accomplishment washed over my tired body and, exercising one last muscle group, I smiled.

Last year, after I completed that EJ Autism Jigsaw 4-Mile Walk/Run for Autism, I wrote that I did the walk (despite so many reasons not to) for one reason: To help my son Mikey and other children with autism. As this year's walk approaches, those same reasons (more like excuses) are still there, but my motivation has grown even more important.

The number of children with autism continues to increase each year. And while the severity of each child’s autism varies on the spectrum, the fact remains that all of these kids have special needs and need to be taught and interacted with in specific ways. These ways are often expensive and not always available to every child.

I can bear witness to the fact that when a child does get the special education and treatment plans they need, they will grow and often thrive in ways that are visibly obvious. This is important for their future development and ability to lead a happy life.

An autism family depends on a community to help their child. There are teachers and doctors and therapists who interact with an autistic child on a regular, sometimes daily, basis. Then there are the strangers, like those who cheered at the EJ Autism Walk finish line, or the families who live in the neighborhood where the walk takes place and hold up encouraging signs, hand you bottled water, and shout out heart-warming phrases as you pass by. You are all part of the growth of our children with autism and we thank you.

As I said, I’ll be doing the Jigsaw Walk/Run again this year (this time as a team called, “Mikey’s Marchers”). My incredible son, Mikey, is again my main reason, but I also think of his classmates and all the other children on Long Island who need that extra care and attention. What they go through every day on their path through autism is very challenging and often frustrating. A four-mile walk is nothing compared to their journey.

The EJ Autism Foundation is a great charity that works “to create Autism Awareness and to support programs and schools on Long Island that currently work with children on the spectrum.” The Jigsaw Run/Walk is one of their annual events to raise money to do the wonderful work they do. Won’t you support them (and me) to reach our incredibly important goals?