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Father’s Day special: Dads of autistic kids share their inner-most thoughts

Posted on 30 August 2017 under News

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Rob Gorski says being dad to three autistic children can be a tough gig.

This is not to invalidate the challenges of everyday parenting, but Gorski says being parent to autistic children is something all together different. He is adamant it has a unique set of struggles, joys, and triumphs.

To coincide with Father’s Day, some dads, including Gorski, offer observations about their relationships with their autistic children.

We would also like to acknowledge the incredible love and dedication of dads in the Amaze community.

Rob Gorski, ‘I used to run into burning houses (but) this is the hardest thing I’ve had to do’

“I very openly and honesty share the joys, victories, struggles and heartache that my wife and I face on a daily basis _ to reach out to other parents in similar circumstance, to ensure they know they aren’t alone.

Let me tell you a little something about my life as an autism parent. It’s hard. It’s the hardest thing I’ve ever had to do.

To put that statement into perspective, I used to run into burning houses and pull people out of truly horrific car wrecks.

I did that for a living and comparatively speaking, being an autism dad is infinitely more challenging.

You know what? I’m tired! I’m tired all the time and I’m not ashamed to admit that. I’m overwhelmed. I’m burnt out.

Even if my brain would shut off and my kids would actually sleep, I’d still be sleeping with one eye open because I’m worried about my kids wandering the house, getting into things or getting hurt.

This doesn’t happen on occasion. This has happened pretty much every single night since Gavin began waking up with night terrors multiple times a night when he was very young.

Since his regression started shortly after he turned four years old, we’ve had to monitor him 24/7 because he would literally eat anything he could get his hands on.  It’s called Pica and I can’t tell you how many emergency room visits we’ve been on as a result of him eating things you wouldn’t think possible.

It’s been this way for well over a decade now. Since then, we’ve added two more beautiful little boys to our life who have been diagnosed with autism, various other special needs and extremely rare health issues as well.

So yeah, I’m tired.

That’s not to say it’s not totally worth it or that there aren’t a million reasons to be grateful for the life I live. It certainly doesn’t mean that I don’t love my kids to infinity and beyond either. In fact, I make it a point to celebrate every little victory because every step forward is progress and I couldn’t be any prouder of my kids.

Does it make us bad, lazy or unmotivated parents because the house is a mess or the yard is unmowed? How about the mountains of laundry that needs to find a home?

No! No it doesn’t!

It means that we have given every ounce of what we have left to our kids.

No one has a right to judge me or any other special needs parent for doing what they need to do to survive. We don’t always have the luxury of choices.

What we need is compassion, understanding, respite and maybe a little kindness. We don’t need judgement, ridicule or harsh words from people who haven’t the slightest clue what our lives are like.

It takes more effort to be critical than it does to simply ask if someone’s okay. Please remember this when dealing with a special needs parent”.

Ron Fournier, author: ‘Do parents understand what happiness means’?

Fournier is author of  Love That Boy: What Two Presidents, Eight Road Trips, and My Son Taught Me About a Parent’s Expectations:

“Moments after my son was diagnosed with autism, my wife confronted me in the doctor’s parking lot.

“It’s time to step up,” Lori said. Be a better father. She told me to take a series of road trips with Tyler _ to bond with our 12-year-old boy and teach him to navigate a world that isn’t wired like him.

Turns out, Tyler did the teaching.

My interviews with parents start with a basic question: “What expectations do you have for your children as they grow up?”

The answer almost always begins with some variation of “All I want is for them to be happy.” But I wonder, do parents understand what happiness means?

One day, while driving, I asked Tyler whether he was happy as a little kid. “I’d say so,” he replied.

“Are you happy now?” I asked

“I’d say so,” he said. “My kind of happy.”

“But you don’t have many friends,” I added.

“That’s the problem,” Tyler said. His tone was matter-of-fact, not accusatory or defensive. ” You have a picture in your head of what makes a kid happy.

“But then you have a kid, and it doesn’t turn out that way. That just means your picture didn’t come true. It doesn’t mean I’m not happy. I have a different picture.”

I used to say I hope to be worthy of Tyler. Now I see that I should hope to be more like him”.

Jason Hague ( A letter to my autistic son on his 11th birthday

“Dear Jack,

You told us something the other day, something that broke our hearts.

Mum pulled out the paper and pencil and sat you down in your room. She asked you how you were feeling. You said “sad,” and that you didn’t want to go to school.

She kept prodding you, and you said the word “awkward”. Then she helped you find more words. Then you did something you almost never do: you spoke a full, clear sentence out loud. You said, “Kids laugh at me”.

Moments like this make us sad because you are sad. They make us a little angry, because people should be more kind. And they make us hopeful too, because you were able to use your words in a very special kind of way, letting us know about a tender thing happening inside you.

That is what we long for more than anything, son. We want to know what is happening deep inside you. And now that we know you are hurting, it brings us back to sadness.

I think I know why you feel awkward.

It’s because you have movies playing inside your head, and you can’t make them stop. You start reciting lines from the beginning of Cars 2, where Finn McMissile is on the boat.

There is a word we use for this. We call it “scripting.” Lots of people with autism do it. And it’s okay. It really is. We like it, because you can make your voice sound like the characters you are quoting and it makes us smile.

But I know, sometimes it can be embarrassing because not everybody knows you, and not everybody likes it. Sometimes they get irritated with you. Sometimes they laugh. They don’t understand how those predictable movie quotes help you to calm down in such a scary, unpredictable world. They just think you’re talking to yourself, and they can’t tell what you’re saying.

They don’t know you.

They don’t know how gentle you are when the little babies come over. They haven’t seen you bring a tissue to a crying little girl.

They don’t know how much you get distressed when your brother gets hurt, or how you smile big when someone in your family comes back after being gone a few days.

They don’t know that you love dance parties, or that you carry the electric salt shaker all around the house in case a waffle shows up.

No. They don’t know you, son.

But here’s the thing: there are many of us who do know you, and in our opinion, you are easily one of the top ten 11-year-olds that ever was.

Your heart is kind, your smile is infectious. What’s more? You work so hard to communicate with us. I know it’s not easy, but you don’t ever quit.

When you let us into your world like you did on Friday, you know what it does? It actually makes you stronger. I know, that sounds silly, but it’s true.

When you tell us how you hurt, it means you don’t have to hurt alone anymore. It lets us come close to you, to hug you, to cry with you, and to help you carry those heavy feelings that weigh you down.

While I can’t protect you from things that make you cry, I can promise you that you won’t have to cry by yourself. We will go through it all together, and we’ll make it, because that’s what families do.

They hold each other, then they turn on Cars 2 music and dance around the living room until the laughter comes back.

Today, as you turn 11, I want to ask you if you will let us in even more. We count it a privilege to share all the happy scenes with you, and to help you shoulder the sad ones. Indeed, it is our joy.

Happy birthday, son. I am so proud of you. We all are”.

Jason and Jack image graciously provided by Anne Nunn Photographers.