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Want to Know Wednesday: What's Wrong with Him?

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Want to Know Wednesday: Hoping this will be the start of a weekly win-win! I get asked questions about Noah and his condition as well as many other things under the sun all the time. I don’t always know how to answer the question(s), or even feel like answering them if I’m being completely honest, BUT I’ve realized the more that people understand Noah they won’t fear him ultimately being kind to and befriending him. I need your help to make this, Want to Know Wednesday, successful. What burning or random question(s) have you had concerning Noah or his condition(s) (seizures, vision, g-tube, cognition, building support system, etc.)? If you don’t feel comfortable asking in an open forum, feel free to email or message me. I’ll start it off with a question that I get almost daily, “What happened to him?” or “What’s wrong with him?”

Couponing through the grocery store

Those who know me know my initial response is something like this, “Nothing. Nothing is wrong with him. His wheelchair acts as his legs since they don’t work well right now.” The medical side of it is Noah was deprived of oxygen before birth and sustained additional brain damage after birth due to a severe brain bleed both playing part to an end result of CP (cerebral palsy). Cerebral palsy is one of the most common childhood disorders existing at birth (congenital) and affects movement, muscle tone and/or posture. There are different types of CP and various levels (degrees) of impact on the body. Noah is considered to have spastic quadriplegia, meaning he has a lot of stiffness (tone) and difficulty moving - controlling movements of his arms and legs. If you’ve been around him for any amount of time you’ll notice an arm will tend to ‘flail’.  It is difficult for him to isolate muscles to make a movement, thus more muscles are activated than necessary to achieve his desired motion. It’s not impossible to isolate the muscles, just very very difficult. Therapy (physical and occupational) and medication are the primary ways we work to overcome (treat) the effects of CP. Introducing Noah to yoga has also done wonders by heightening his body awareness (proprioception) and untapped abilities.

I CRINGE when I hear reporters and others say “they SUFFER from cerebral palsy.” Yes, there are challenges that come along with this diagnosis. However, life isn’t over. The way daily living, educational and recreational activities are done may not be conventional, yet there’s a way they can be adapted and accomplished. My ultimate goal is to help Noah achieve his highest level of independence, whatever that looks like. I hope a byproduct of working towards that goal will be teaching others how to see and unlock the potential in him and others who are differently-abled.

Again, CP affects people differently resulting in different treatment options that include but aren’t limited to special equipment, therapy, medication and surgery. Cerebral palsy doesn’t get worse with time and there is no cure.  I’m a fan of the website Kidshealth.org as the content and explanations given on various conditions are very user friendly. For more information on cerebral palsy visit http://kidshealth.org/en/parents/cerebral-palsy.html

* Post content and discussions should not be taken as giving medical advice. I’m a health educator, not a medical professional. Information given for educational purposes only and is specific to my personal experiences. Consult your physician if you have specific medical related questions.