Living Victoriously With Autism

Bebe Nicholson

Acceptance doesn't mean giving up hope.

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Photo by Ben Hershey on Unsplash

I was thrilled the other day when my grandson, who loves to swim, said “pool.” Since then he’s added four more words to his vocabulary; Mom, Dad, shower, and pizza.

But I’m not writing to brag about a toddler’s burgeoning vocabulary. My grandson isn’t a toddler. He’s 11 years old and severely autistic.

He isn’t potty trained, doesn’t throw a ball, will only eat bananas, pizza and Cheerios, and his house is locked up like Fort Knox to keep him safely inside.

You might not think learning five words is cause for celebration, but in our world, every bit of progress, no matter how slight, is a ray of light cutting through the darkness of a grim prognosis. In our family, small things kindle hope and are grounds for rejoicing.

One evening my son, daughter in law, and their four children came over for dinner. Things went fine at first.

The three kids who aren’t autistic worked on an art project and played in the basement while the autistic one crouched behind a chair with his iPad.

Are You Missing a Child?

Our son filled us in on how his business was doing and later we moved to the back porch for dinner. That’s when the policeman showed up at our door with words that always strike dread in our hearts: “Are you missing a child?”

Dinner was forgotten as everybody went into panic mode.

It seems one of the other children left a door unlocked and our grandson escaped outside and wandered down the middle of the street, where he was picked up by a neighbor. The neighbor, seeing his personal information on the iPad he carried, alerted police and they used the information to track us down.

Our son rushed next door to pick up his son and the neighbors, incensed that a little boy would be allowed to walk down the middle of the street, threatened to call social services. But the police officer, whose wife worked with severely autistic children, was understanding and kind.

Our grandson has since developed more sophisticated means of escaping. He’s learned to search out keys and unlock doors, pry open windows and crawl out, or simply slip through the slats of a fence if he isn’t watched every minute.

For the most part, he is watched every minute as far as it is humanly possible to keep tabs on a child 24/7. Windows are nailed shut, doors are bolted, and the other children are scrupulous about paying attention to their brother’s whereabouts.

But there are lapses. How do you barricade your house with three other children and an autistic child who can slither out of his clothes, slip identify bracelets and tracking devices off wrists that are skinny as eels, and seems to have a sixth sense for discovering cracks in the fortress?

Misconceptions About Autism

My daughter in law prefers telling people her son is developmentally challenged because she’s discovered that the word autism is loaded with misconceptions. It’s used to encompass such a broad array of symptoms that even children who are brilliant in school but shy socially are sometimes diagnosed as being “on the spectrum.”

If she tells other parents her son is autistic they frequently say, “What’s his special talent? Autistic children are so gifted.”

Sometimes people say, “My son’s autistic too, but we’ve worked with him and now he’s in advanced placement classes and making all A’s.” Or “My autistic child used to have a hard time making friends but she’s asking to have playmates over all the time now.”

My son and daughter in law would love to be able to say their child is somewhere on the spectrum rather than severely disabled; that he even knows how to ask for a playmate. For now, they are thrilled beyond measure when he says pizza.

Joy and Hope

But I’m not writing to focus on the woes of having a family member with autism or the problems of dealing with people who don’t understand the severity of severe.

I’d rather tell you about how even a child with our grandson’s disabilities brings joy into our lives and why we continue to see sunshine and hold out hope when statistics say there is little chance he will lead a “normal” life.

My son and daughter in law are amazingly cheerful and happy people, despite the hand they’ve been dealt. They have learned that acceptance doesn’t mean giving up on the hope that their son might improve. The possibility of breakthroughs and medical advances is never discounted.

Living and Loving Every Day

What acceptance does mean is learning to live in the moment without despairing about tomorrow.

Enjoying a child without harboring ambitions or dreams for his future is a different kind of love molded not by what might be, but by what is.

“Rarely are our lives most shaped by our biggest and highest aspirations. Rather, our lives are most shaped, for better or worse, by those small things we do every day.” Ben Witherington

My son and daughter-in-law exhibit a positive attitude in marked contrast to many families I see in similar circumstances.

When I was driving my grandson home from school, I made the mistake of rolling down his window so he could enjoy the breeze. I glanced back in time to see his new shoe flying out and tumbling along the shoulder of the road as cars whizzed by.

Would my daughter in law call me stupid; say I should have known better than to roll down a window?

Wasn’t he always throwing things out of cars, off boats, into lakes? Once when we were boating he grabbed his dad’s new shirt and flung it into the water, quick as a lightning strike.

Hesitantly I told my daughter in law about the shoe, and she burst out laughing. “That is so like him, but don’t worry Mom! It happens all the time!”

A week later, she showed me the shoe. "I found it in perfect condition beside the road! Can you believe it?"

We don’t despair. We laugh, and love, and chalk off the shoe as replaceable.

Meeting The Challenges

Much of our ability to enjoy life and live in the moment with an autistic child is grounded in faith. We believe each individual is “fearfully and wonderfully made,” as the scriptures tell us, and we believe that God can work through circumstances, even adverse ones, to bring blessings.

This doesn’t mean I believe the universe inflicts disabilities and suffering upon poor, unsuspecting people. My faith is more in the direction of believing we’ve been turned loose in an imperfect world with our response to life’s challenges being within our control, even if some of the challenges are not.

Faith is a hard pill for some to swallow. Why would a child be born disabled? Why all the suffering?

But if we can get past the why, we find immense peace in knowing we are loved by a force in the universe that is greater than ourselves and the certainty that there is always, always hope.

“When you are in the valley, or in the thick of a storm, don’t ask God why. Ask God, what can I become? What can I do to glorify God in my life through this? Then the floodgates open.” David Ring

With faith, you believe in miracles, but you know that if the miracles you long for don’t occur, challenges can be used for good and joy is still possible.

If one of your children sings a solo in school chorus or makes honor roll, you rejoice. You also rejoice if one of them says pool.

Your perspectives have shifted. Your idea of achievement is not a future thing you strive for but an ability to embrace the present with gratitude and hope.

The other day our kids came over, and instead of crouching behind a chair with his iPad, our grandson’s face lit up in a smile.

He chose to stay close by, joining us on the porch for dinner. As night settled softly around us and my son and daughter in law loaded their kids in the car to head home, I thought about what a good evening it had been.

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I've worked as editor, newspaper reporter, freelance writer, and book publisher. My writing includes lifestyle, humor, travel, relationship, family, politics, faith and health articles, along with three published books. In my various careers, I've been a journalist, retail manager, nonprofit director, flight attendant, freelancer and mom. You can connect with me on Twitter, Facebook and Medium.

Alpharetta, GA
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