5 Lessons Our Adult Children with Disabilities Need Us to Learn

As our children with special needs grow into adulthood, they need us to grow too.

We have a legally binding contract in our home stating that if Max keeps his body healthy for the day, he will be rewarded with enough sugar to propel him into several lunar orbits. Yes, I’m telling you unashamedly, this is actually part of what we call our “healthy body program.” My 25 year-old son has a few self-destructive tendencies, which appear to be nicely tamed by the lure of sugar. When Max keeps his body healthy for the day, he can earn a Popsicle, as well as two small gluten-free cookies that closely resemble cardboard in both appearance and taste. And when things really go well, he can earn a smoothie.

Our wonderful autism consultant, Jeanne, was making a visit as we finished up our dinner. Max sat back from his now empty plate, his tummy round and full, and yelled, “Smoothie!” “You earned it Max!” I cheered as I jumped up to head into the kitchen. It was then that I heard a soft and knowing voice.

“He can make it himself,” Jeanne said.

My eyes widened a bit. The thought had never actually occurred to me, perhaps because the smoothie is made in a machine that utilizes whirling blades sharp enough to liquefy a rock in 1.6 seconds.

“Just give him a recipe,” she said kindly. Ok, I thought. I can write up a list of ingredients. And then she said something that made me search her blue eyes as if she might have bumped her head. “But don’t help him.”

Don’t help him? I thought. He’s never done this before! It’s our job to help Max.

“Just see what he can do on his own,” she added, “without any help or direction.” With that Jeanne packed up her things and floated out the door.

My eyes darted toward Max’s teacher, Kacey, who has been a constant support for the past 4 years. Kacey knows Max. She met my wide eyes with a calmness that would not let me off the hook.

I dutifully wrote up the recipe, placed it on the counter beside the NutriBullet, and called Max over. “Max, you can make your smoothie tonight. Here is the recipe,” I said as I darted toward the other side of the kitchen and ducked into a foxhole.

Max awkwardly approached the recipe, took one look, and immediately made a sound that if properly channeled, could be used to alert police in the event of a prison break.

Eventually, after several minutes of protest and demands for help, Max turned toward the recipe. Forgetting those pesky measuring cups, he grabbed the bag of ice and filled the NutriBullet container to glacial proportions, spilling cubes across the counter and onto the floor. Max paused for a moment, and then threw a few ice cubes back into the freezer before realizing it was faster to hide them behind the coffee pot. He then reached for the second ingredient, frozen bananas, for which there was absolutely no room in the container.

Kacey and I locked eyes, both of us silently cringing as if we were watching Max spoon-feed an alligator, which would not be on the program for at least another month.

It was agonizing. I felt as if my hands had been tied behind my back and tape stretched across my mouth. Everything in me wanted to rush in and help, to keep my son from failing, to keep him from the struggle. His life with autism is already so hard – it’s my job to make something easier. Isn’t it? For the past 25 years I have lived like a sprinter on the block, running shoes on, glasses wiped clean, eyes vigilantly darting from side to side. I’ve been trained to spring into action, to prevent and protect, to do for Max.

I have lost the ability to see when I might sit on the side and stretch a little.

The hand written recipe was now wet and curling against the kitchen counter, the ink already blurring on the page. Max stared at the NutriBullet container overflowing with ice and without a speck of room for the bananas. He pulled his shoulders up to his ears, and I braced for another protest. But as I watched, Max did something else…

He thought.

He problem solved.

He figured it out.

It wasn’t close to being right. It took four times as long to make. By the time he finished, there was smoothie pouring lava-like down the cabinets and peanut butter hidden in places that won’t be found until it has fossilized in the next millenium. But none of that matters.

“You did it Max!” Kacey and I yelled, with our hands finally free and stretching into the air.

Max turned around, globs of smoothie dripping from his cup, and forced a rather distressed grin.

I smiled back, almost gasping, as if I’d experienced a little bit of a miracle in Max, and maybe even more so in my own heart.

That night I rushed to my notebook and wrote down my thoughts. I titled it my 5 lessons from the smoothie.

          My child can do more than I know.

          Hovering is not helping. Rescuing is not teaching.

          My child needs a problem before he can problem solve.

          My child needs the privilege of experiencing failure.

          Anything worth it comes with a struggle.

Now … with all that said, maybe we should wait just a bit for that alligator-feeding program.

By Emily Colson