Friday, April 22, 2016

The Same as You. But Different. A Hero’s Journey



          “We are the same as you,” the Emcee said in a halting voice. “But different!”
         
          It was the annual production of the music therapy group my son belongs to. It’s diverse, with a wide range of ages, races, disabilities and functionality levels.
          This year’s show was unique in that its lines were written by the performers themselves. “A Hero’s Journey” expressed the joys, frustrations, and triumphs of life with a disability.
          Some participants wrote their lines conventionally. Some used picture boards. Some used a methodology called Rapid Prompting Method (RPM), which helps non- conversational individuals express themselves by spelling out responses on a letter board. Students used whatever methodology best gave them a voice.
          Dreams. Fears. Intelligence. Some wrote many lines, some only a few. What shone throughout this fun evening of song, dance, and drama written by the kids was that we have under-estimated the special needs community.
The audience heard of dreams, with the talent and intelligence to fulfill them. We heard fears. Society as a whole discriminates against the inability to express oneself, to do life in a typical manner. Special needs make people different. But they are the same: desiring to excel, to be given a chance, to study, pursue their dreams, contribute to society. I could write a series of blogs on what I heard that night. Mostly, we heard their desperate need for a voice.
          To hear them, we need to listen slowly. Intently. Without preconceived notions. Sometimes, via methods and technologies we aren’t comfortable with.
          People with special needs deserve respect. Because they often can’t talk well, or don’t appear intelligent, we make assumptions. We think they don’t hear or understand us. What we heard, over and over that night, was that they get it. There’s a smart, sensitive, feeling human behind the foolish façade. They understand when they’re dismissed as irrelevant. When they are cut, they bleed.
          Our son has autism. He is verbal, but doesn’t express feelings well. Using RPM, he wrote this line:
 “I am afraid of the frustration of this sucky autism life.”
My husband and I were devastated.
We didn’t know he felt that way. We hoped we could compensate for the pain of disability. We hoped he wasn’t bothered much by the things he couldn’t do. We hoped he was content.
Hope is not a strategy.
He’s been doing well, but sometimes the frustrations of sensory overload and seizures and not being able to make himself understood overwhelm him.
Then there’s a meltdown . He’s 19, husky, strong.  The meltdowns are ugly, the consequences steep.  
He’s getting better at control and medication helps, but sometimes it’s not enough, and Vesuvius blows. Afterwards, he cries and apologizes.  We all cry. It is sucky, this part of his Hero’s Journey.
Now that we have heard his voice, we won’t stop listening.
We’re all on a journey called life, with enemies and allies. But with special needs, the enemies are stronger and more numerous. Sometimes they are in unexpected places, like the school system. The allies are fewer. Many are scared because the needs overwhelm them. They feel helpless.
There are basic tools. Care, try to understand. Be willing to reach out.  Overcome your fear of what could happen, and invite a special needs person on an outing. Suggest your organization sponsor a special needs event or scholarship. Teach your kids they don’t have to be afraid of someone who drools, or talks funny, or doesn’t talk at all. It’s hammered into us not to discriminate on the basis of race, sex, religion or sexual preference. Let’s add disability to that list.
Special needs individuals are on a tough journey. They are Heroes, but if they’re going to make it, they need allies like you and me.
What do you think when you see someone with special needs? What do you do? How do you react?
Think through that.
Because after all, people with special needs are the same as us.
          But different.
         
         
         

2 comments:

  1. Absolutely beautiful! I am so thankful that our kids have an outlet like this to express themselves.

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  2. I'm so glad you posted this! I missed the musical this year, but we need more options for our special needs kids to participate in the community. I'm finding it gets harder as they get older and bigger. I love that your piece talks about inviting our kids out. Even friends & family can forget how limited the options can be for special needs kids/adults. Let's take awareness and turn it into action. Everyone loves an invite! :)

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