by Dan Olawski

It had been a stressful, emotional, and exhausting few weeks. And this night, Christmas Eve, had been more of the same.

Mikey’s autism had been in full-blown mode, with the added challenges of severe gastric problems that were impacting all of our lives. It had taken all of our strength and patience to get Mikey to bed tonight. And, finally, he was asleep.

My wife and I spent some time downstairs watching TV. But shortly after Mikey was sleeping, my wife decided she needed to go to bed, too. I was too wound up and indicated that I was going to stay on the couch a little longer and watch some more TV.

I channel-surfed for a bit and searched for a good, old movie to distract me. It wasn’t long before the remote control fell to the floor and I was fast asleep on the couch.

Suddenly, my dreams were filled with an odd, disturbing sound that sounded like hands rapidly clapping. I then realized I wasn’t dreaming as a shimmering, glowing light enveloped my eyelids and forced me to open them and squint at the horror in front of me.

For lack of a better term, it was a ghost or some kind of spirit. He floated and bobbed up and down as he flapped his hands. I was scared, but couldn’t look away. The spirit then spoke:

“I am the Ghost of Autism Past,” he bellowed as he shuddered from the effort of speaking.

“The Ghost of Autism Past?” I spoke out loud. “What kind of nightmare is this?”

“Tonight, you will be visited by The Three Ghosts of Autism. I am the first,” he shuddered. “The Ghosts of Autism Present and Autism Future will then follow.”

“Leave me alone! I just want to go to sleep! I’ve been haunted by autism enough on this night,” I pleaded.

“Come with me! Things were not always as they are now,” the haunting spirit said as he pulled me along with him.

I next found myself in a cold, white, sterile medical facility that echoed with the screams of children. I felt a chill down my spine and attempted to block the sound out by covering my ears. The ghost shook his head and said, “These are things that cannot be undone.”

“What is this place? Why do you torture me like this?” I begged.

“You do not know torture. The children of this place, they knew torture,” he admonished.

I soon realized by the clothing of the doctors, nurses, and others that, whatever this place was, we were in the late 1960s or ‘70s. It brought me back to my own childhood, but not one that was anything like this.

“Your thoughts are correct, Daniel. This is an autism treatment center in 1969,” the ghost confirmed.

“I didn’t think there were that many autistic children during this time,” I wondered aloud. “And what is being done to these kids who are here?”

“The numbers are few, the tribulations are many, the outlook is bleak,” the spirit scolded. “The 1 in 1,000 children considered autistic at this point face the prospect of cures of evil.”

“Cures of evil? What do you mean? What is going on here?” I shouted.

“In that room, where you hear the screams, a child is undergoing electric shock therapy,” said the ghost as he pointed a shaky finger. “Over there, where those children are staring aimlessly at the walls, that is the LSD therapy wing. And, down the hall, are children who live in constant fear of their therapy: Behavioral Change, which calls for pain and punishment.”

“This is horrible! This is an evil, evil place!” I screamed. “I’ve seen enough, ghost! Take me home!”

I next opened my eyes to find myself in a pool of sweat and still trembling with utter sadness. Was I losing my mind, was the stress finally getting to me?

I made my way upstairs to go to bed, pausing along the way to peek in on Mikey. He looked content. I sighed, got into bed, and let my head hit the pillow.

Just as I thought my nightmares were behind me, a new light glowed before my eyes and I heard a different unsettling sound. It was one word being repeated over and over and over. Yet, I couldn’t understand it.

“I am the Ghost of Autism Present,” he screeched.

“Of course you are,” I moaned and wondered where I would be brought next.

The ghost said no more and turned around to lead me on my next disconcerting journey. As we passed Mikey’s room the ghost gave a nod his way and we kept going.

We completed our journey in what seemed to be a classroom, not unlike the ones Mikey has been in over the past few years.

“Look upon autism as you know it now,” the ghost commanded. “Their numbers are legion, their future uncertain.”

“These children are of my Mikey’s generation. Sadly, with 1 in 50 children being diagnosed on the autism spectrum, it is more common for families to be touched by this disorder,” I acknowledged.

“The cures of evil are gone now,” the spirit asserted. “But the path is still crooked and the masses overwhelm.”

“But things are better, right?” I pleaded. “We are heading in the right direction and more people are aware of autism.”

“Awareness is not enough!” the ghost howled. “There is more to autism awareness than knowing what autism means.”

“I agree. Knowing that my son is autistic doesn’t directly help him,” I conceded. “But what about ABA, special diets, and sensory therapy?”

“This is a crossroads!” the ghost’s voice shook my entire being and filled me with both fear and optimism.

Abruptly, I found myself tossing and turning back in my bed. My wife groggily whispered, “What’s the matter?”

“Can’t sleep,” I said as the mother of all underestimations. “It’s okay. Go back to sleep, Hon.”

She rolled over and I could hear she was sleeping peacefully again. I waited for my next visitor until my eyes were too heavy to fight.

These Ghosts of Autism are heartless bastards. Just as I felt the warmth of a restful sleep coming upon me, I was jolted upright by the sound of millions of children and a light that pulsed inches from my face.

Opening my eyes in fear, there was yet another specter floating next to my bed.

“I am the Ghost of…” he began.

“Autism Future. I know, I know,” I groaned with surprising audacity for someone who was facing a ghost.

“So, you have been anticipating my visit?” the ghost asked.

“Haven’t we all?” I countered.

“Tonight, I shall show you two paths,” the spirit began. “Which one is true is yet to be seen.”

I blinked and found myself in a classroom again. But this one, this one was huge. The biggest I’d ever seen. And it was jam-packed with obviously autistic children and very few teachers. Many of the children were unattended and entertained themselves with their variety of stims.

“This doesn’t look good,” I mumbled. “I’m guessing this is the bad path.”

“You are wise in your assessment, my friend,” the Ghost of Autism Future said. “Here you see the results of out-of-control autism growth, inadequate training, and an economy that doesn’t want to ‘waste its money’ on those kids.”

“How did this happen?” I asked as I fought to hold back tears. “Why did it happen?”

“Autism awareness failed to turn into autism action,” the spirit answered. “The focus remained on diagnosis and not on prevention or treatment. There aren’t enough trained teachers, doctors, and therapists to handle the millions of new autism cases each year. And the public, well, in times of squalor they turn their backs on these forgotten children.”

“This is tragic! I don’t like this path. Please, please, take me to the second path,” I begged.

With a flash of bright disorienting light, the spirit erased the horror and replaced it with a scene that didn’t register with me at first. I then realized we were in a library and pages and pages of newspaper and magazine stories were speeding across my field of vision. They were filled with headlines like:

“Congress Approves 100% Autism Insurance Coverage”

“Researchers Focus on Genetic/Environmental Causes of Autism”

“Autism Families Experience Lower Treatment Costs, More Options”

And, amazingly, jumping out in 100-point type…

“Autism Diagnoses Fall to Pre-WWII Rates”

“Are? Are these true?” I asked in awe. “Is this the second path?”

“They are a possibility. A path that will require persistence, knowledge, and love to achieve,” the ghost spoke in a steady, comforting voice.

“I can do those things, but how, how do I get others to do them?” I wondered out loud.

“Be strong. Look in your heart. Never stop doing what you are doing now,” the Ghost of Autism Future said. “If you follow your path, you can help create this path.”

“Can we go back and bring my son and my family to this path now?” I implored. “Even just for a little while?”

“This path does not exist yet,” the spirit reasoned. “You will find your way to it one day, though. For now, it will live in your dreams.”

And with that, I once again found myself in my bed. But this time, I was smiling. I rolled over and kissed my wife on the back of the head. Got up and tip-toed into Mikey’s room again. The glow from his night light lit his face and I swore he was smiling, too.

I returned to bed and as I closed my eyes I realized it was after midnight and now Christmas Day. I fell asleep and my dreams were filled with what would be the greatest gifts of all.

My employer did a blog about my speech at this year's Young Autism Program Charitable Fund Dinner/Dance. I'm very flattered and thoughts of the event still fill me with inspiration. :-)

The blog, which appears on The Q Source Resource Blog, is called "Q Source Staff Member Delivers Keynote Speech at Young Autism Program Charitable Event." You can read the blog by clicking here.

It’s simple math, really. And, as with most of my experiences with math, the outcome is kind of sad. The simple math of autism doesn’t work out in my favor and leaves me, as usual, frustrated and searching for answers.

I’ve never been great at math. In grammar school I would have gladly been stuffed in my locker than sit through math class. It is by a small miracle that I got through college without taking a “real” math class (I took “History of Math” and it counted, yeah baby). But there is one equation that I don’t need algebra or calculus to figure out:

My autistic son, Mikey, is now eight years old.
I’m going to be 47. That’s almost 50, folks.
In ten years Mikey will be 18. (Holy *&@*#!)
In ten years I’ll be 57. That’s almost 60, folks.

From that point on the equation gets scarier and scarier: 28 – 67, 38 – 77, 48 - ???.

I’ve always had this information in the back of my mind. It’s not new to me. It’s the sort of thing I think about late at night in bed when all is quiet and dark and I can’t sleep. It joins my other heart-wrenching thoughts: Mikey will probably never go to college, Mikey will probably never drive a car, Mikey will probably never get married, and I’ll probably never be a grandfather.

Now, Mikey isn’t disabled or as severely autistic as some children. But the sheer reality, the simple math, is that my wife and I will, at some point, be unable to take care of him. That isn’t to say we are giving up our battle to help him overcome autism…it is just the truth. And the truth can be either a kick in the stomach that brings you to your knees in defeat or a kick in the pants that spurs you on to action. I’m leaning toward the latter, thank you very much.

These thoughts of Mikey’s future, this earth-shaking equation, was brought to the forefront of my awareness when I attended a meeting of the DDI Family Advocacy and Support Network recently. DDI, the Developmental Disabilities Institute here on Long Island, is an amazing organization. Mikey attended their Young Autism Program in his pre-school years and would be much farther behind in his development without them. They do amazing things to help children and families from the beginning of their autism diagnosis through to, hopefully, moving into a mainstream program in their school district.

But DDI doesn’t just work with school age children. They also serve adults with autism, especially those who need 24-hour care. DDI runs several residences to care for this growing, and often forgotten, segment of the autism epidemic. But, as with many things nowadays, the economy and tight budgets make it increasingly difficult for them to provide service to all of the cases on the waiting list.

I met some amazing people (mostly parents of adult children with autism) at the meeting. To hear their struggles and tear-inducing stories (such as years-long waiting list for their children to get placement) was saddening, but also inspiring. Because Mikey is still a young child, most of my thoughts and advocacy efforts lean toward children with autism, but these strong, determined folks made me vow to widen my focus. I plan on speaking with as many of them as I can, and doing my best to learn from them and write about topics that are important to their families.

I’ll never be good at math, but that doesn’t mean I’ll give up trying to figure out the answers. By focusing on simple addition (me plus my wife equal love for Mikey) and multiplication (I promise to love him twice as much every day) I think I’ll finally get a passing grade in that most challenging of subjects: The simple math of autism.

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.

Originally published on February 8, 2013 at the Autism Society blog

After my previous blog article (“Merry Christmas, Daddy!” An Imagined Conversation with My Son) was published, I received many wonderful comments and emails. The most common thread among that feedback was that my Christmas wish would come true someday. That concept of “someday” has stuck with me for a while now.

The dictionary defines someday as “at an indefinite time in the future.” When I think of that sort of passage of time I picture the pages of a calendar ripping off and flying through the air as in an old black and white movie...a frenetic and non-reassuring image. But, as is often the case in the English language, someday has another meaning when spelled some day. Some day is defined as “a non-named but particular day in future.” A more positive, but still indefinite spin on the word, “We’ll get together again some day…I promise.”

For parents of children with autism, we watch our children struggle through various challenges while we work toward, and hope for, a positive outcome. We always shoot for some day, but often realize it may be more like someday.

I remember back to when my wife was pregnant with Mikey and how I’d think, “Some day he’ll be here with me.” And then when he was a baby crawling on the floor, “Some day he’ll be walking.” When he was a toddler it was, “Some day he’ll be talking.” But since that life-changing autism diagnosis, it just has been years of, “Someday.”

As I entered this new year with all of its freshness and potential for good things to happen, I thought about the regression and lack of progress that plagued Mikey last year, making that someday seem impossible to ever arrive. However, when it comes to Mikey, I’m an optimist. And my wife and I knew there were things we needed to do to steer our son back in the right direction, and over the past few weeks it appears he has turned a corner and is making positive gains again.

So, now, I’m trying to look at Mikey with a new word in my head, “soon.” Soon…one day soon. With a lot of work and a lot of love…one day his some day will come.

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.

Originally published on December 21, 2012 at the Autism Society blog

Back when my wife and I were first married (and long before our son, Mikey, was born) we had a lot of friends and family with young children around Mikey’s age (7 years old). We’d get the biggest kick out of how talkative and precocious their kids were, and, despite the parents’ occasional frustrations, with how detailed their conversations could be about every aspect of their favorite cartoon or questions about why the sky was blue.

Our experience with Mikey’s communication skills, unfortunately, has been quite the opposite. While Mikey won't stop talking at times, it's all mostly echolalia. The rare times he puts words together to request something, he either speaks too low or too loud. His answers to questions are usually "yes," with that response coming as soon as he hears what you are saying (and sometimes before that).

I often remember back to the way those children would bombard their parents with every thought in their head and I look at Mikey and think, “Ask me a thousand questions...and then a thousand more. Sing a song with me. Laugh at a joke with with me. Scream at me, even. Please, bring it all on and never stop. You’ll never bore or frustrate me.”

This time of year is particularly rough because any feelings Mikey has about the Christmas season are unexpressed. You can’t imagine the joy I’d feel if Mikey had a Christmas list or hounded me non-stop about wanting a certain toy. It is that very desire that has made it difficult for me to give my wife my own list. Why? Because she can’t possibly give me what I really, really want: A conversation with Mikey…

It’s Christmas morning and, as I just start to open my eyes, Mikey walks into the room and climbs onto the bed with me.

“Merry Christmas, Daddy!” he says in his beautiful, beautiful voice.

“Merry Christmas, Buddy!” I say as I give him a big hug and kiss.

“Daddy, do you want to go downstairs and open presents now?” he asks excitedly.

“In a few minutes, how about we sit here and talk for a little bit?” I say, feeling completely content with the world. “Is there something you really wanted for Christmas, Mikey?”

“Yep, you know, Daddy, I really, really, really want that Chuck E. Cheese toy,” he says with a look that drives home his words.

“Well, I think you were a pretty good boy this year. Maybe Santa left you a gift or two,” I say, trying to hide the knowledge of every gift sitting under the tree.

“Hey, Daddy? How does Santa fly through the air with his sleigh?” he asks with a quizzical tone.

“Well, I can’t say for sure, but I’d have to think it’s magic,” I say, hoping that’s a good enough answer.

“Hmmm, yeah, I think you’re right. But how does he remember what every kid wants for Christmas?” he says, convinced that his father knows what he’s talking about.

“Uh, well, you know how you have an iPad? Maybe Santa has an app for that,” I say, holding back a laugh and giving my most honest face I can muster.

“Oh, that sounds so cool!” he exclaims. “Can we go downstairs to the Christmas tree now?”

“Sure, Buddy, I know you can’t wait. But do you have any other questions for me?” I say, trying to extend this amazing moment as long as I can.

With a grin and a smile, he moves his face close to mine and says, “Yes, I have one more question…why is the sky blue?”

Holding back a tear, I pull Mikey into a hug and I whisper, “Thanks, Buddy.”

“You’re welcome. Merry Christmas, Daddy,” he says as we start to go downstairs.

“Merry Christmas, Mikey,” I say through the biggest smile ever.

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.

Originally published on November 7, 2012 at the Autism Society blog

Over the weekend leading up to Hurricane Sandy’s arrival here on Long Island, I did what most homeowners were doing. I put away outdoor items, taped up windows, gassed up the cars, and took inventory of flashlights and batteries. As for my son, Mikey, he took no notice of any heightened importance…it was just another couple of days to him.

I couldn’t help but think of the saying: “Ignorance is bliss.” I’m not sure how true that is, but, in a way, I’m glad Mikey wasn’t as worried and nervous as his mother and I. And, thankfully, as Sandy hit us with her worst, Mikey slept through the night. It was only in the aftermath of the storm that he would realize things weren’t as he knew them (and wanted them) to be.

We lost our power and heat early Monday afternoon as the hurricane was arriving. We were very lucky not to suffer any damage or flooding from the storm (I wish I could say the same for some of my neighbors). But the house wouldn’t feel warm and the lights wouldn’t shine again until Friday night.

Unfortunately, with the changing weather patterns, Hurricane Sandy is the second hurricane to come through Long Island in two years. Hurricane Irene hit us last year and also knocked out our power out for a few days. It was then that I realized autism doesn't disappear just because the lights go out. Your house may lose power, but autism doesn't. This time around was no different.

When most of us have to deal with something like a power outage it disrupts our routines, but that is even more amplified for a child with autism. Add to that no school or home services and very limited places to go outdoors and you have the makings of a stressful and potentially dangerous situation.

(It is here that I have to thank Apple for creating the iPad and iPod…our main sources of distraction for Mikey during the outage – although keeping them charged proved quite challenging…thank goodness for car chargers.)

The first night without power or heat wasn’t a big deal for Mikey. It wasn’t cold out yet, he had a fully charged tablet, and he stayed close by to us (I believe sensing our trepidation). The next morning, after the storm passed and the blue skies greeted us with relief, I spent some time checking for any damage to our house and Mikey was able to lead a pretty normal day. Hearing over the radio of the devastation to most of the Island and the surrounding areas tore at my heart and also made me realize it was going to be a while before we got our power restored.

The first post-Sandy days consisted of daylight hours of trying to keep Mikey entertained without being able to take him out in the car (the roads being treacherous from downed trees and wires and powerless traffic lights), and night hours of trying to keep him warm and safe. I felt my chest tighten with stress each evening as the sun went down and the dangers of candles clashed with the potential hazards of falling over objects in darkened rooms.

Overall, thankfully, Mikey got through the week pretty well. His behaviors were definitely increased and he had a few meltdowns, but, quite honestly, after a few days of no power and heat I had a couple meltdowns myself. When requests for ice pops went unfulfilled and batteries finally died for the night, Mikey’s stress levels would go up. His efforts to communicate lessened and with no structured setting like in his classroom there was definitely more stimming and echolalia.

We did our best to provide Mikey with as normal an environment as we could and were there to comfort him when normal wasn’t possible. That is all we can do as parents, because while autism may not be afraid of the dark…neither is love.

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.

Originally published on June 17, 2011 at the Autism Society's blog:

“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 familiar 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 talking 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 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 talking to me Mikey. I do. And I will always listen. I can’t wait until the day you can tell me every single thought in your head. I’m listening.

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.

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.

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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.” 

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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).”

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“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. 
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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.”

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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.

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

This article was originally published on April 8, 2013 at the Autism Society's blog site:

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 more than a 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 awareness 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 typical, while others are quite 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 the failed attempts to communicate or complete a simple task 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 struggle 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 autism awareness? 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 that is ALL 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 the answer could be yes. With most awareness campaigns like this the general public seems more open to throwing some money the way of the cause and then going on with their regular lives. I can understand that. I really can. And I don’t 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. I want people to know that our children with autism are really amazing kids who go through amazing struggles every day. I want them to know that autism parents don’t want you to pity them or their children, but to understand just how deeply love and respect are important to the autism community. I want them 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.

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.

This was originally posted on a blog I created back in 2008. This appeared April 2nd of that year.

I sat there for hours in a rocking chair in my parents' livingroom. Hunched over. Fingers cramping. Neck straining. Looking from the-magazine-to-the-keyboard-to-the-television and back. I ignored the complaints of my sister to let her watch TV. Finally, I entered the last line of code and typed "run."

The result of my efforts was a tiny ball bouncing across my parents' TV screen.

I smiled.

My family said, "That's it?!"

It was the early 1980s and I was in my young teens. Those were the first years of home computers. I had saved all my money to buy the Commodore Vic-20 that I was typing on and entering the pages of code that would earn me my ultimate reward of the tiny, red ball (and not a round ball, mind you, but the squared equivalent common in those days) repeatedly bouncing across the TV screen (at the time, many of the low-end computers would be hooked up to your television and not a monitor).


Being interested in computers and tech back then was really appealing. Everything was new and the concept of being able to "program" a home computer was pretty cool. Sitting for hours to type in code (no hard drives back then...at least not that I could afford) seemed to fit in with my obsessive drive to finish things and be rewarded. 

Of course, I wasn't a "programmer" I was just typing code that someone else had written and published in a computer magazine. The most I ever "coded" on my own was a simple little program that would ask you to enter a number from 1 to 10 and then display a message when you entered the number. The devious side of me would enter this code on computers in stores and instead of a positive message I'd have the computer display insults when someone entered a number. "Number 5? Nooo, you idiot! That's wrong!" Yeah, I was a geek even back then.

My parents, probably looking to get something in return from their tolerating me hogging the TV all the time, kept pushing me to go into computers. But, I've always loved language and words and writing. I knew from a pretty young age I wanted to be a writer or an editor--anything to do with words. When the time came that I was finally able to go to college I knew I was going to study English and Journalism.

That decision wasn't met with the encouragement or happiness that I'd wanted from my parents but I knew that computers were just a hobby for me. It didn't appeal to me to think about sitting for hours in an office writing code, etc. That was something I did for fun and as the years went on I knew I wasn't skilled enough to keep up with programming languages. Computer languages are very rigid and that's not the way my brain works (ironically, I went on to edit several programming language magazines).

Every career test I ever took always listed writer/editor as one of the top jobs I'd be good at. I was pretty convinced (and very close-minded). I think it wasn't until I had graduated college, with honors, with a degree in English/Journalism, that my parents finally accepted my choice of profession. Over the years, such as the months of unemployment I suffered through, there have been times when I thought about switching careers, but I've always known in my heart what I was meant to do.

The important thing is that I made the choice for me. No one forced me to pick a career. No one told me that because I was horrible at math I shouldn't even think about becoming an accountant or something like that. I wasn't pre-judged as to limit my future.

Stop Spelling Can't After the First Three Letters