The New Normal Blogging Disability

What Is Cerebral Palsy Anyway?

One mom breaks down perceptions and (mis)conceptions about CP (Cerebral Palsy).

Elissa Sagoskin and her son Amichai. Courtesy of Elissa Sagoskin

Editor’s Note: This blog originally appeared at www.changeperceptions.net.

My son’s birthday is in July – July 31 to be exact. Last summer in a count down to the big day, I did my own 30 for 30 with Amichai (that’s my boy – pronounced Ah-me-chayi). Each day, for 30 days, I posted videos or pictures highlighting everything Amichai CAN do.

The overwhelming response I got – in addition to the all the positivity and daily comments about how fabulously cute this kid is – was, wait Amichai has CP? Just a few days ago, a very good family friend – a friend who knows the whole story about Amicahi – remarked, I didn’t even realize this was CP.

And that’s the point. We have certain perceptions and (mis)conceptions about CP (Cerebral Palsy) or maybe don’t even know what it is. I certainly fell into this trap before Amichai was born. My concept, my vision, my idea of CP – was contained to people who had braces on their legs or used crutches or were paralyzed in wheel chairs. I knew they had difficulty controlling their muscles. I imagined that people with CP faced more physical difficulties and hardships than the average person. I imagined they had limitations. And, I imagine now that these thoughts and ideas are representative of what most people think. But, its not about ignorance or being uneducated – I think it’s a simple matter of exposure.

I never had any real interaction with someone with CP or anyone with a “disability” for that matter. Sure I would always lend a helping hand to someone who seemed like they needed assistance or hold the door open for someone in a wheel chair. I certainly had compassion, but I never knew anyone – had an actual relationship – with a person who was physically disabled in some way. And if I am being honest, disabilities scared me. As an athlete, the idea of not being able to physically move or use parts of your body was frightening. To be clear, I see this as a complete lacking in my maturity as a human being.

But then came Amichai (see Amichai’s full story). Five days after Amichai was born, he was diagnosed as hemiplegic – a form of cerebral palsy. The athlete who was scared of disabilities, who never had a meaningful interaction with anyone physically handicapped – was suddenly catapulted into the world of CP.

Indeed, I got a crash course on CP, specifically hemiplegia. Very briefly, I learned that hemiplegia is a neurological disorder that affects just one side of the body. Amichai had a stroke. The stroke damaged his left side of the brain; therefore, his right side would be affected. He was quickly categorized as hemi-right – meaning that he could potentially experience anything from a weakness in his right hand or leg (or both) to complete paralysis. There were many other facts offered up by our doctors the day he was diagnosed, but the biggest fact presented was simply the unknown. The doctors had no way of predicting anything. He’s still so little. Babies brains are malleable. We can’t know yet. Each case is individual. Those were the responses to every question. To be sure, the staff that treated Amichai were top rate, extremely intelligent professionals – the nature of the injury just does not lend itself to immediate answers, even by the smartest of doctors.

I learned that I simply needed to wait – wait to see how he develops to get a clearer picture of what his challenges would be. Of all the facts I learned, I knew nothing. How could I just wait? I needed to know something concrete. And then my Dad – the clearest and most rational thinker I know -told me: Listen to the doctors, heed their words, understand them – but, don’t forget to look at the reality on the ground. The reality on the ground can sometimes provide more accurate answers than expert advice.

So I looked at the reality on the ground – I looked to see what I could learn. I looked and I saw Amichai. I saw him staring at a series of black, white, and red cards placed by a nurse around the edges of his NICU crib. As he experienced seeing these images for the first time, it was like literally watching his brain light up.

There he was. That’s him. I saw him fighting and I learned that he was resilient. I saw the drive and determination, and I learned that – while I was still frustrated by the unknown, I was no longer scared. Resilience, drive, determination – those are intangibles in life. Those qualities will take you wherever you want to go – and I learned that he had them.

Those were my facts on the ground, that was my reality. Since that moment, I have relied on those facts more than anything else. Any ideas about what I thought CP was, any fears I had about disabilities -what it might do or not allow you to do – they slowly dissipated. Disability faded and all I saw was ability. I listened and continue to listen to Amichai’s doctors, his fabulously talented physical and occupational therapists, but – I allow Amichai’s own strengths to lead the way. I witness him do everything and anything he wants to do – he runs, he jumps, he climbs, he rides his bike, he swims, he plays with his legos, he builds with his blocks, he colors with his crayons, he pretends he’s superman, he laughs all he time… He does all of it – so much so that people say, wait this is CP? Ya… this is what CP can look like. Sometimes its challenging and not everything is accomplished in the “normal” way – but he does something better than normal. He adapts, he thinks outside the box – he creates his own normal.

Cerebral Palsy (CP): a neurological disorder caused by an injury to the brain or other malformations that occur as the brain is still developing.

With Amichai as point in this journey, CP – for me – has evolved past this basic definition. CP has been an avenue for me to change my own perceptions of what capable is, of what normal is, of what strength is, of what perfect is…But even outside the realms of CP, and perhaps precisely because of my experience with it, my perceptions about what I saw as my own capabilities, my own normal, my own strengths, my own perfect – all of it changed. I am not the same person I was four and half years ago. I am not living the life I perceived I would. I discovered perceptions can create barriers. They can make you stay in one spot, even when that spot isn’t good for you…so I allowed myself to break through them. It’s because of Amichai that I could do it. It’s because of what he teaches me every. single. day.

I am better for it.  And I know change will continue to come.

Originally from Philadelphia, Elissa Sagoskin now lives in Jerusalem, Israel. An accomplished athlete and health nut, Elissa works as personal fittness trainer and coach, but her hardest and most satisfying work is that of a mom to her son – Amichai. As Amichai meets the daily challenges of CP, Elissa has redefined for herself what constitutes as a disability and strives to change common misconcpetions in her community. She hopes others will continue to embrace difference and create an envrionment of inclusivity. Elissa writes about her journey with Amichai at www.changeperceptions.net
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