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Better Than Normal

By Mike Wuebben, Autism Speaks Chief of Digital Strategy

I remember what our pediatrician said about our newborn son Willem just before signing the discharge papers.  There’s something “not normal” about him, she said. 

Willem has been diagnosed with Moebius Syndrome, Duane’s Syndrome, strabismus, facial paralysis, hypotonia, cataplexy, narcolepsy, vertigo, sensory processing disorder and severe acid reflux among other maladies.   

He has been examined by neurologists, geneticists, psychologists, ophthalmologists, homeopaths, chiropractors, sleep specialists; behavioral, physical, occupational and speech therapists.

Suffice to say, the kid has some challenges. 

Willem is eight years old and there is a long list of things a typical eight-year-old can do that he can’t.  But he can have blood taken without flinching.  He can swallow a pill with no water.  He can navigate our entire house while bouncing on an exercise ball.  He can recite just about every comic from Far Side Galleries 1, 4 and 5.

But Willem’s greatest superpower is his compassion.  When his older brother is sad, he is the first to console him.  He apologizes to my wife and me for mistakes his sister makes.  

His facial paralysis makes it impossible for him to show expression and affects his speech.  That, coupled with his self-stimulatory behavior have made Willem quite shy and he has a tough time making friends. 

Then came Reece -- a bundle of energy who occupied the seat next to Willem in second grade.  I’m not sure you could find more polar opposites than these two boys.  Willem is very sensitive to touch but for some reason he lets Reece climb all over him.  And Reece somehow finds the patience and attentiveness to hear Willem’s quiet voice tell a joke. 

The boys were split into separate classes this year, but they still ride the bus together and have play dates. And this week, Reece’s teacher shared with us an assignment he did about his friend that warmed my heart.  It read:

"My best friend is Willem. Willem wiggles a lot. He is never not nice. He cares a lot. He is friendly. He never gives up. He shares a lot. He is friends with everybody. He helps people. He plays with everybody. He is the kindest kid on earth. He is lovable."

 

It’s been said if you have one true friend you have more than your share.  So this is just one more thing that’s “not normal” about my son.  And I couldn’t be more proud.