Tuesday, July 16, 2013

The Simple Math of Autism

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.

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Monday, July 1, 2013

One Day His Some Day Will Come

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.

“Merry Christmas, Daddy!” An Imagined Conversation with My Son

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.

Autism Ain’t Afraid of the Dark

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.