Sunday, August 25, 2013

The Importance of Being Charlie

I have been following Charlie’s actions, adventures, trials, and victories for a long time. I found Charlie on the Internet through his mother, Kristina Chew’s blog, which became We Go With Him. I try to see what Charlie is up to as much as possible. Because Charlie, though he has no idea, is one of the leaders of my son’s generation of intersected, nonspeaking autistic young men growing up while changing public attitudes, policies, and actions about people on their ray of the spectrum. The importance of Charlie being Charlie is lost on everyone. It is not lost on my son Mustafa and me.

Before I “met” Charlie online, my goal was to get myself a bike with a trailer for my giant son. I dreamed we could go out and ride the trails together in peace, and the constant harassment he sustained from others because of his differences would be lessened for a bit each day. I later thought he could master an adult tricycle and the challenge would then be to keep him going in the right direction. Internally my sadness that he would probably never feel the total freedom of riding a bike independently was a subliminal stalker, sapping my motivation. The constant mental war of insisting to professionals that my son was competent to even stay seated on a bike, much less ride it, was wearing me down. Then I began to read about Charlie. He was multiracial, multicultural, nonspeaking, fighting pain, so very much like my son. Riding a bike. The heart stopping, high speed, euphoric adventures of Charlie. As I read, I began to take heart. My plans began to shift. I wore what my family calls that look on my face. I don’t know what the look is, but it last resulted in Mustafa getting a treadmill he could get on whenever he wanted. Everyone, I mean everyone, thought I had taken leave of my senses. Mustafa, unmedicated for his ADHD, could not stand in one place much less on a treadmill. Mustafa loves the treadmill. Loves it. Nothing stops him. He’s demanding it several times a day. So now, I look at my son, I think of the look on Charlie’s face when I see the pictures of him riding and apparently I get that look again. I have no idea how this idea of mine will end. But if Charlie can do it, all of us who have nonspeaking autistic sons and daughters owe them the chance to try. No matter what anyone says. Because Charlie has proven it is possible, and beyond possible, it is wonderful.

I tried to teach my son music. In another life, I loved the piano. I was taught to sing. My husband plays guitar. Mustafa is ten. He would have been playing a musical instrument by now. I have spent all this time using color to teach him music. Then I watched the movie “Loving Lampposts” and there was Kristina with Charlie, guiding his hands on the Cello. I sat, stunned. They were working with sheet music.  I emailed Dr. Stephen Shore. I explained my son’s diagnosis, what I had been doing to try and teach him music. I requested Dr. Shore’s dissertation from him. His response was immediate and firm. “Start over. Teach him musical notation.” WHAT?!?  But…. WHAT?!? I read Dr. Shore's published papers. I read his book. Could Mustafa learn the notes? How do I know he can’t if I don’t try?

Then something else happened.  We were going through another day, his Dad playing the guitar for him. When we saw his hand shyly reaching toward the strings his father placed the guitar right in Mustafa’s lap. And Mustafa loved it. He just loved it! I never considered trying to teach him a stringed instrument. He’d need finger calluses just to properly produce the chords. It seemed impossible.  But our son had that look of joy and determination that marks every child who has ever been in love with a musical instrument. The love that carries each child through the awkward stages of learning to mastering and becoming one with the beloved instrument.  So now what? Now I am rethinking, We are starting over again. All because of Charlie, and his mother’s openness in sharing things about who Charlie is, what he does, and how he lives his life. I searched the Internet for someone who was as much like my son as possible. I found Charlie. Charlie is important because he is like my son in so many ways. When Charlie wins I feel all of my son's people win. When Mustafa wins, I want to say, “Charlie, we did it!”

I’ve decided that when our lives get back to some semblance of balance and routine, I will make a series of postcards whenever Mustafa masters something Charlie was the inspiration for. I want to show Charlie why he is important. Perhaps there is another parent out there searching for Charlie. Charlie means life can be richer regardless of what others say. Charlie is the continuing story of a boy becoming a man while overcoming ableism and adversity with the help of those who love him as he is. I hope whoever is looking for Charlie finds him. We are so very fortunate we did.

Read about Charlie's bike riding adventures a sample is here: 4 Days of Bike Rides


  1. I love you, Kerima. Your belief in Mu, your insistence on thinking, and re-thinking, going straight to the source - You are an amazing mother.

  2. "I will make a series of postcards whenever Mustafa masters something Charlie was the inspiration for."

    I couldn't agree more that Charlie is an inspiration. Kristina Chew's blog is just beautifully written, it's always a privilege to read. As is this post, thx so much for this description.

  3. oh... you made me cry...
    in a good way though...
    this is absolutely beautiful


  4. Thank you for knowing (and showing the rest of us) that there is always someone to learn from, someone who's gone ahead, someone who's muddled through. But most of all, thank you for reminding me that the teacher is never far from the student's experience.


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