April 2013

Wednesday, April 10, 2013

A Daily Reality for Those Touched by Autism: Re-Post

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.

Wednesday, April 3, 2013

Yes, He Can! - Re-post

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

Recently, during an evaluation of my son Mikey's progress, someone said, in response to some results from the tests, that Mikey would probably never be a lawyer and that there were good vocational schools to think about for the future. Now, I kept the Jersey Boy in me tame and didn't explode at this person. What I would have said, though, would have been along the lines of...DON'T EVER TELL MY KID WHAT HE CAN OR CAN'T DO!!! Especially not when he's barely three-years-old and doing well in his autism therapy.

Over the years, it has become apparent to me that there are many parents of autistic children who seem to want the easy route. They just want to know the bare minimum they have to do to make sure their child can do something, anything with their life. I want more than that for Mikey and I honestly believe he wants more, too. Mikey is a very motivated kid and very smart and he never backs down from his schooling. Don't tell him, or me, that he CAN'T do something.

This was the first time I'd heard someone say Mikey couldn't do something. His therapy, and everything we've done since he was diagnosed, has been about what he can do and what he will be able to do. Are there challenges in his life and in his mother's and my lives...of course. But we don't give up or back down and I don't expect anyone who is part of his life to back down.

Most of the parents I've known from Mikey's schools are dedicated to helping their children fight past autism's challenges. They don't want to change their children they just want to make them better and make life easier for them. Isn't that what all parents want from their kids regardless of if they have a disability or not?

Mikey loves jigsaw puzzles. He sits there and does them over and over. Maybe he'll grow up to be the NY Times Crossword Puzzle creator someday. Or maybe he'll surprise me and say he wants to be a computer programmer. Whatever it is that he decides to do with his life I'll support.

Monday, April 1, 2013

Autism Awareness: A Good Start, But We Can Do More

This article was originally published on April 26, 2012 at the Autism Society's blog site:

April is my son Mikey’s birthday month…it’s also National Autism Awareness Month. Little did my wife and I know, seven years ago, that the month of April would be important to us for both reasons.

Most Americans are now aware, however slightly, that April is Autism Awareness Month. And you’d have to have been living under a rock to have missed the recent big news about the drastic increase in the number of children with autism (the rate is now at 1 in 88 children, and 1 in 54 boys, having some form of the developmental disorder). But, honestly, we have to ask ourselves how much that matters to those of us already touched by autism.

Long after April is over…long after the stories fade from the news…autism is still there. And we, as parents, family, and teachers of children with autism, are the ones truly aware of autism and the fact that diagnosis is only the first step in a life-long process.

Special awareness months and heightened attention to autism in the news are important for educating the public and motivating parents to get their children tested in case they see the potential signs of autism. But we need more than that…

Awareness months need to be followed up by “Treatment Months.” The media needs to report on autism treatments and focus on families with children who are in need of all the help they can get and not just on the heart-warming story of the high school teen with autism who plays sports and has tons of friends. Mainstream news stories rarely show the real daily challenges that a child with autism faces.

Don’t get me wrong, I’m all for Autism Awareness. It’s why I write these blogs. It’s why I wear my autism wristbands. It’s why I volunteer whenever I can. But whenever April comes around I can’t help but be reminded by Mikey’s birthday, and the news, that much, much more needs to be done in the world of autism.

Right now it seems like Autism Awareness is mainly focused on diagnosis. Again, that’s incredibly important and very necessary. But, the post-diagnosis landscape still feels like a barren desert for many parents. In most cases, you’re told your child has autism and then not much else. I can honestly say that after Mikey’s diagnosis I felt so frustrated by that “now what” feeling of helplessness and fear. It’s important to be aware of autism; it’s more important to know what to do about it.

Taking into account that our children are each unique in their needs and how autism impacts their lives, I propose that every doctor and therapist that makes an autism diagnosis should also be required to provide some sort of comprehensive plan for parents and caregivers. This plan should be put together based on studies, input, and advice from the CDC, doctors, teachers/therapists, and parents. Parents facing a new autism diagnosis need guidance and support from sources they can trust.

A few days ago, as we celebrated Mikey’s 7th birthday, I realized how lucky we have been with his early diagnosis and the skilled teachers and therapists he’s had. But I also stopped to think about the way I felt right after his diagnosis and how every April, as the awareness campaign ramps up, I feel for the parents of children who will receive a new autism diagnosis.

With that in mind, I deeply believe that if we can take all the good that comes out Autism Awareness and convert that into factual, proven therapies and treatments we will do far more good than any brief news story on the 11:00 news will ever do. And that will truly make April a happy, happy month in more ways than one.

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.

Editor’s note: If your child has just been diagnosed with autism, read the Autism Society resource After the Diagnosis for some initial guidance.