Mike Wuebben is the Chief of Digital Strategy for Autism Speaks and has written about raising a special needs child on this site in the past.
Shortly after my son Willem was born it was clear he would face a lifetime of challenges. Willem has Moebius Syndrome, a rare neurological condition that causes paralysis of the facial muscles and a host of other symptoms including, in Willem’s case, very low muscle tone.
There is also about a 30 percent rate of autism in Moebius cases.
That statistic was in the back of my mind as I watched Willem develop in his first years of life. At 18 months he was nowhere near walking - or even crawling - and the only word he spoke consistently was “mama.”
Because of his low muscle tone, movements like sitting up or even eating sapped him of his energy. When it was time for bed we would lay Willem’s limp little body down to sleep- his eyes still partially open due to the fact his facial muscles couldn’t fully flex to shut his eyelids.
In the next bed, his older brother Ben, then three years old, would insist I tell him a story. And it had to be a story I made up. I remember the first one I told him. It was about a little boy and his pet frog, Melvin. The boy insisted on bringing Melvin everywhere, even snowboarding, but all his friends complained, “Frogs can’t snowboard.”
They all laughed when Melvin showed up wearing his bright white snowsuit and goggles with a frog-sized snowboard under his arm. In the end, he proved everyone wrong by performing awesome aerial moves and was greeted with cheers from the crowd as he skidded to a stop in front of the ski lodge with a great big frog smile on his face.
Every night I told Ben a Melvin story, always with the same basic plot: no one believes in Melvin and he proves them wrong by performing incredible feats of skill.
A few weeks after I started the Melvin stories my wife called me at work. “You have to start writing down these stories. He won’t stop talking about them.”
I told her to let Benny know I’d think up an extra special story for bedtime that night. “Not Benny,” she said. “It’s Willem. He won’t stop talking about Melvin and all the great things he does.”
I never knew Willem was listening. I wasn’t sure he was even capable of listening. It struck me how similar he was to Melvin. And just like the boy in the story, his brother Ben is always there for him, standing by his side. And that day I promised to never underestimate my children again.
Willem is eight years old now. He has never been formally diagnosed with autism but he has many of the classic symptoms: self-stimulatory habits, sensory processing disorder, sleep problems, GI issues. We are in the process of evaluating him, but I’ve long ago dropped the fear of another diagnosis.
He’s also a pretty happy kid- which in itself is quite an accomplishment. And no matter where he lands on the spectrum, I consider it a great privilege to call him my son.