We’re Having Fun and We’re Doing It Together

Hear me out…

This phrase is our family’s unofficial motto. When you live with severe autism you work so hard every day to make even incremental progress.

When you’re at the end of your short rope and sweating from the preparation and execution of the simplest task to enjoy a teensy slice of normal, you can hardly believe it all came together for one shining moment.

An autism diagnosis is like having the wind knocked out of you.

You know you’re likely to take a deep breath again, but when?

My son Gabriel was diagnosed with autism at 4 years old, in 2009. His little brother, Zachary, was about to turn 1.

These were messy, difficult years of extensive sleep deprivation, endless evaluations, and incorporating volumes of information into our fledgling family’s day-to-day operations.

At that time aside from Pixar movies, Gabe’s preferred activity was tossing leaves and little sticks into the backyard bird bath while Zach pushed around a bubble mower. These differences aren’t as dynamic when kids are small and parallel play is appropriate.

From the beginning my husband, Dan, and I have aimed at making opportunities for our boys to play with each other.

So they could engage and take turns, when they were little, we set up plastic bowling pins and bowled in our hallway.

Gabe would lose interest quickly and try to get back to his beloved Pixar movies, leaving Zach puzzled but not forlorn.

Mini-golf is another game we all tackled together where Gabe would scoot the ball around the green with his putter and Zach would enthusiastically copy his big brother.

Although we attempted these activities, Gabe’s eloping and lack of understanding of danger usually made outings with these two little boys super stressful and short.

Once Zach began to recognize the growing differences between them he would say he didn’t want Gabe to have autism any more so they could play together. For a moment it broke my heart. But it doesn’t pay to row around in that lake of sorrow.

Zach eventually turned outward to play with the neighborhood kids, a right of passage for most. But it doesn’t work to include Gabe because the rules other kids play by make no sense to him and he loses interest immediately.

I got over being sad about this, too. While Zach attends birthday parties and plays outside, Gabe is inside on his iPad or in therapy.

Over the years, with the help of Special Olympics bowling, we’ve been able to make bowling into a family activity that Gabe has improved at. It was chaos at first.

He used to run across people’s lanes or bowl his ball down their alley, so we always had to stay on top of him. Things have gotten easier as he’s grown up a bit and we’ve all practiced giving him a little more independence.

Sometimes, I honestly can’t believe how far he’s come.

We live in Texas and swimming is our escape during the summer. Gabe LOVES being in the water and it’s something we can all enjoy together. He even taught himself to hold his breath under water!

The boys chase each other around until Gabe decides he’s “all done” and wants to head back inside, away from the fray.

Because Zach has played baseball for 5 years Gabe is now more accustomed to attending games (with intermittent turns on his iPad) to watch his brother swing the bat and catch balls in the outfield. Gabe points and exclaims with certainty, “Zach! Play base-ball!”

When Zach’s friends come over they acknowledge Gabe hanging out nearby, honking and beeping along to his iPad videos, headphones pressed to his ears.

The other boys play video games together while Gabe watches their antics from a comfortable distance.

Gabe turned 13 this week and behaviors of all sorts have come and gone. Tapping walls, snapping, putting non-edible things in his mouth, throwing small objects at ceiling fans, squealing, guttural noises, head-butting, playing with woodchips, having to touch specific objects, having to throw sticks on the roof, turning lights and ceiling fans on and off, disrobing at inopportune times…plus hundreds more I can’t even remember any more.

Some days he repeats the same phrases a thousand times and because no answer will satisfy his beautiful mind, he repeats it again. And again, and again, and again. It can send a person, or a whole family, into hypnosis.

Zach will sometimes question why the rules are different for him and his brother. “Because autism,” my husband is fond of saying, “and it isn’t changing. Ever.”

All of the activities we engage in as a family have taken us YEARS of practice and patience and false starts and failed attempts. But we keep trying.

We stand out like a sore thumb a lot and I have gotten over that.

If something doesn’t work, we stop doing it and try again some other time. Since we got Gabe’s service dog, Presley, last August, our community outings are MUCH safer, and our hypervigilance and stress levels have decreased immensely.

Gabe is tethered to Presley every time we leave the house. Zach understood Gabe’s running away in public was dangerous and it weighed on him very heavily. Zach constantly worried about Gabe which is a price a young child shouldn’t have to pay.

Presley has given all of us tremendous peace of mind about navigating the community together.

Siblings of a child with special needs often grow up with a heightened sense of empathy and understanding for what this life entails.

Zach and Gabe rarely fight, which is a blessing, and they love each other so completely. Hugs are Gabe’s currency.

Gabe asks about Zach when he’s missing from the scene, so I know their bond is strong. And autism will never take that from them.

Written by, Jessica Koller

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, subscribe for exclusive videos, and subscribe to our newsletter.

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