Tag: Autism Society

It’s Okay…

Dan OlawskiLeave a comment

Streamers fell from the ceiling and a brass marching band played “Happy Days are Here Again” as the school bus pulled up for the first day of school a couple weeks ago. Well, no, not really, but to say I was happy about the beginning of the school year is quite the understatement.

Mikey didn’t have the best summer break. He regressed a lot and his behavior was challenging at times. I always look forward to the beginning of the new school year, but this year I really couldn’t wait for it to come. Do I feel guilty about saying that? Sure. But it’s okay…

Mikey needed to be back in that structured environment and that’s how I justified my feelings. I did have some pangs of guilt about rooting for school to start back up and for thinking that being around the teachers and other students would be better for Mikey than anything I could do for him at this time. As for having those thoughts, well, it’s okay…
There is a great opportunity for guilt when you are an autism parent. And that stems from the first diagnosis: “Is it my fault?”

Through daily life: “Am I doing enough?” “Did I do the right thing?”

Then there’s that other internal guilt that just wrenches your heart. It’s a guilt that makes you feel like the worst person in the world. But I’m here to tell you, it’s okay…

It’s okay to be happy about back-to-school season…

It’s okay to be happy when your child goes to bed

It’s okay to have those bad days when everything about being the parent of a child with autism gets you down…

It’s okay to want to scream…

It’s okay to cry…

It’s okay…

We all have those feelings at some point. They come upon us sometimes at the worst moments and overwhelm every fiber of our soul. But yes, it is okay to give in to them…with a few stipulations:

  • You must be a truly loving parent who gives your child all the love and attention you have to give
  • You must have the ability to know when your child will gain from you stepping back to let a teacher, therapist, or coach take over for a bit
  • And, most importantly, you must be able to realize when an occasional urge to cry or scream has become a problem that consumes you on a daily basis and requires the help of a professional

So, as I sit here listening over the monitor to Mikey still goofing around three hours after I put him to bed, I can’t help but think to myself, “Go to sleep, buddy. Go to sleep!” And you know what? He will. And I will. And in the morning…it will be okay.

This blog was originally written a few years ago for the Autism Society’s Blog. It has been re-posted online a few times since its original appearance.

Autism Awareness Month

PB&J: THE SECRET TO BEING A GREAT AUTISM DAD

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PB Cropped

Yes, it’s true…the secret to being a great Autism Dad is PB&J. (Wait, why are you opening the cupboard? Put the peanut butter back. Yes, and the jelly.)

No, no, you won’t be needing any bread for this.

The PB&J I’m talking about is much different…and less sticky. PB&J equals: Patience, Being There, & Joy. Okay, okay, I know I cheated a little with the “B” meaning Being There, but let’s just call it poetic license. Heh, heh.

Patience
I’ve mentioned before (in previous blog posts) the importance of patience for an autism parent, but I think it’s even more important for Autism Dads. Men are usually considered to be the more impatient parent (“Just wait till your father gets home!”), but whether that’s a curse of our genes or a gender stereotype, I believe we just need to work a little harder to find that much-needed virtue.

And, let me be clear, the patience I’m talking about is well beyond what outsiders 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.

Being There
I’ve come to learn in life that being there is half of the secret to living. But I don’t just mean showing up, it’s what you do while you’re there. An Autism Dad needs to do everything a father of a typically developing child would do…and then multiply that by a hundred.

I know that my son, Mikey, loves the times we do the usual father-son things like tickle-fights or going to the park. But I believe deep down he truly appreciates the times I’ve been with him at the doctor or did a parent training session with him at his school. It was quite evident to me that Mikey expects me to “be there” for him when, due to my recent back injury [now, almost 12 years ago], I was unable to do all those things with him and his behavior suffered because of it. As my back has healed, so too has my relationship with Mikey.

Joy
Joy might, at first, seem like a difficult concept for an Autism Dad to comprehend. But joy is simply an extreme happiness. A happiness that takes great pleasure in even the littlest of things.

As Autism Dads we have many great opportunities to be joyous. Our children face a daily battle at times just getting through the day…each time they overcome those challenges is a time to be filled with joy. Perhaps your child has just beaten a severe stim, or tried eating a new food, or successfully used the potty. Let yourself see the joy in that, Autism Dad. I know my heart overflows on those rare times that Mikey looks me straight in the eye and says, “Daddy.” You don’t need to look very far for a joyful occasion.

So, Autism Dads, you are all wonderful, strong, loving parents and your children appreciate you. But if you’re ever feeling at a loss for how to cope, just reach for the PB&J. Nope, not the sandwich, this PB&J is far more filling and satisfying.

Autism Awareness Month
An Autism Awareness Month Blog Post

I wrote this piece many years ago and it has since been re-published in various places (the Autism Society blog and, most recently, the Organization for Autism Research’s blog in 2016). It has always been one of the most popular blogs I’ve written and I appreciate all of the comments and feedback I’ve received about it. I hope you enjoy it too.

A Daily Reality for Those Touched by Autism

Dan OlawskiLeave a comment
Puzzle Pieces

This article was originally published on April 8, 2013 on the Autism Society’s blog site. I am re-posting it here in honor of World Autism Awareness Day:

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…”

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 want people to know that our children with autism are really amazing kids who go through amazing struggles every day.”

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.

Autism Society Bio: 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.

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

Dan OlawskiLeave a comment
Puzzle Pieces 2

I wrote this for, and it was originally published at the Autism Society’s blog site on April 26, 2012. With today being the beginning of Autism Awareness/Acceptance Month, I thought it would be a good time to re-post it here…

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.

“Awareness months need to be followed up by ‘Treatment Months.'”

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.

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

Autism Society Bio: 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.