Saturday, January 12, 2008

Persistence, Patience, and Achievement

Recently, I was reminded of my first opportunity to attend a “CHARGE Syndrome 101” training to begin to understand the syndrome of my infant daughter. We did a simulation where we plugged our ears and covered our eyes to simulate the dual sensory impairments of CHARGE. Just impacting those two senses in a relatively small way – ear plugs to cause a mild loss and looking through a plastic bag to blur and distort vision – set all of us behind greatly. We had a hard time carrying on conversations, moving about the room, and engaging in any activity. Most people shut down, tried to disappear, hunched to make themselves small, and stayed in their spots avoiding conversation or contact with others.

After we’d experienced that and realized the incredible impact a small impairment can have, the presenters told us to then imagine that ALL of our senses are impaired. Imagine that you can’t hear or see. Your muscle tone is low and your balance is off or non-existent so it takes lots of energy just to stay upright in your chair and control your body in space. You can’t eat so you’ve never experienced taste and have very limited oral motor skills. You are tactile defensive so you have had limited touch experiences and the ones you have had are uncomfortable to you. For example, my daughter hates shampoo and lotions and used to fuss as if they really hurt her – not to mention the many uncomfortable and painful medical procedures she has endured from birth on.

We learn everything through our senses. If you get poor input from your senses, how do you understand your world? Even if it were you inside, as you are now, with “normal” intelligence, how would you learn? How would you show us what you know?

That experience was life-changing for me. My daughter has pretty good hearing and vision as far as CHARGE goes. She did eat eventually. She walked at age 2. But even so, all of her input is slightly “off”. Besides having a skewed or different perception of the world, she’s also had very unique life experiences for a child. She spent her first 6-9 months trying really hard not to vomit. She couldn’t be jostled and played with like most babies. She couldn’t nurse or eat from a bottle. She has spent more time with doctors and therapists than most adults ever will. She’s spent far less time playing, going to the park, Chuck E. Cheese, or the zoo than most kids because she has been busy with medical and therapy stuff.

If you think of what our kids are dealing with, you understand that they need extra time and support to grow, learn and communicate.

My daughter is doing well. I feel so lucky that all my greatest fears didn’t come true. And my heart aches for those still living with those fears. Our kids can and do achieve. It takes longer and may take unique approaches to accommodate their sensory differences/impairments, but they do achieve. We can never be certain of the potential that lies within each of them so we have to be patient and supportive as we persist in doing everything we can to help them achieve and show their potential.

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