The World Deserves to Know Him

We have always been very diligent in letting our son interact with the world.

At 19, he is 6’3” and 230lbs. If he were the same boy as he was at 6 or 12, he could not be living with us.

We could not handle him at this size.

It’s been scary, difficult, unpredictable and emotionally hard. Time consuming and physically demanding at times. But with a neurotypical daughter who is an avid athlete, we knew he had to be acclimated to her world and the world.

As much as we give all to our son, she deserved no less.

We didn’t want the typical autism scenario of one parent at home and one parent out and about with her.

So, from the beginning we endured and uber planned and just kept it up year after year.

And yes, it took years.

Around age 12, he got the hang of hanging with us but too also began to actually enjoy it.

And I think these pictures, taken this year his sisters softball tournament say it all.

At 19, not only does he enjoy the world around him and not only does he participate but he also gives of himself now.

I write this to all the moms and dads that think staying home is the best way. The easiest way. And what their child prefers, the safety and comfort and predictability of home.

Stepping out that door is hard and many times will not seem worth it.

But it is, or it will be. Maybe many years down the road. You will cry and want to give up and give in. We did feel that many times.

But I knew that the world needed him in it and he would need it.

I hope in 2019 that parents of autism will open that door and take that big step outside.

How can we expect the world to learn to embrace them if we don’t do the same.

As much as this has benefitted him and our family he has blessed far more strangers and friends by venturing into their world. It will be the biggest gift you give in your life.

We won’t always be here for him. The world will be.

I realize that many of you might read this and think to yourselves…well your kid isn’t as affected by mine.

They may see the pictures of him today and falsely believe that it was an easy transformation.

No, my son is your child. In every hard, difficult and heartbreaking way, he was the same.

I’ve never read an autism story that I haven’t personally experienced the same with my son.

He was non verbal until age 7. His sensory dysfunction was severe.

Wind, environmental noises, people talking loudly or a child crying sent him into a meltdown.

Just seeing anything gooey or foamy or gel like induced uncontrollable gagging…forget actually touching it. Bath time with shampoo and soap was sheer torture.

As was having to bath anywhere except his own tub.

He ate 5 things- chicken fingers, cheese pizza , cheeseburger, fried shrimp and boiled shrimp. He still does.

Restaurants, elevators, crowds, the Happy Birthday song and candles were anxiety ridden dysregulated events. And don’t get me started on his weather phobia and only being in the tub with the water running could offer any comfort.

If we had a string of bad weather days, he took so many baths that the water company would call thinking we had a leak.

Giving in and living a life behind closed doors would have been so easy. So much easier.

Except that he had a sister and we had a daughter.

An outgoing social daughter that we weren’t going to let her live her life any differently than if her older brother wasn’t autistic. Nor were we going to choose which parent got to parent her on any given day.

So it began. We lived as a family out in the world.

Yes, we had many back up plans and best/worst case scenarios and driving two cars and sitting in the car with him. Stares and rolled eyes and annoyed looks from friends and family and strangers alike.

It was this way for many many years.

Always accompanied by his two red dogs. And quite often a basketball. These were his anchors and safety in a world we were making him become a part of.

My niece was married in an exquisite wedding in a beautiful ornate church where every detail was fine tuned to be the best.

Riley was 11 and he loved weddings. His sister was a Jr. bridesmaid.

He insisted on taking his green basketball to the ceremony, where he marched right down the aisle with it and sat on the second row with his grandparents.

We resisted the urge to sit with him.

He gave his undivided attention to every second of the service. Him and his green basketball are glaringly obvious in many of her beautiful photos. And it’s her favorite part of the wedding day.

That day, I realized he had taken his first step on his own in the world in his way. And we let him.

And the 8 years of struggle, hard work and wanting to give up a million times and pushing him out of his comfort zone and ours was worth it in that moment.

No, it wasn’t smooth sailing after that. It never is.

And puberty hit like a freight train. That’s when medication took us to the next level.

I will be honest, pharmacology has saved us and him. It reduced his anxiety so that he could really participate in life around him. Medication allows him to really enjoy and crave socializing and new experiences.

It enhanced every single area of his life.

Many may take offense at my staying this but he and we would not have the life we have without it.

It saved his life as surely as chemotherapy saves a cancer victim. No different. But our years and years of not taking the easier path formed the foundation.

You just have too. For your own sanity and for the life of your other children if you have them. And your marriage.

Most importantly, he deserved to know the world. And the world certainly needed him in it.

My heart breaks every time I read a parent or ASD child being so isolated. It really doesn’t have to be that way.

I was you. Now I’m not.

Those thousands of difficult outings and failures with few success were so very worth it.

He is a happy, helpful young adult now that can be here until we aren’t.

I sleep peacefully knowing I gave him that. And that’s what I want for all parents walking in the same shoes.

If we can do it , you can too.

Written by, Kimberly Freeman

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.