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A Candid View of Cerebral Palsy: What Your Pediatrician Won’t Tell You Right Away

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You’re impatiently squirming around in your chair in the waiting room of your child’s pediatrician’s office. You do not know what is wrong, but you suspect something is. Your precious baby is not hitting milestones as fast as other babies her age. What could be wrong?

Obviously, this is a very “written to scale” scenario of what a parent’s experience may be like before getting medical answers for their child who was just diagnosed with cerebral palsy (CP). I was diagnosed with cerebral palsy at 18 months old. I was not meeting the walking milestone that babies should be. I started intensive early-intervention therapies, both occupational and physical, right after my diagnosis. I did begin to walk when I was 3 years old. However, CP is a lifelong disorder, and my problems did not just disappear when I was 3. 

CP is commonly misunderstood because really it is just an umbrella term. There are so many types of cerebral palsy a child could have. Personally, I have spastic hemiplegic CP that affects my left arm and left leg.

Medical doctors will prepare parents as best they can for the physical challenges their babies are bound to face. Doctors will be quick to talk about getting involved in therapy treatments, bracing, walkers, wheelchairs and so on.

want to discuss another side of a physical disability that doctors may fail to adequately address: the emotional toll on the child while he or she grows up.

I am now 20 years old writing a reflection of only what I wish was discussed with me, but I hope this may help some other kids whose position I was in just years ago — and in some ways still am.  

I grew up never bothered by my numerous weekly therapy appointments, various rounds of Botox injections to help my muscles’ rigidity, and eventual surgeries which I am so pleased that I had. I am now an independent woman because of all the hard work I needed to dedicate to accomplish my goals as a kid. What I with struggled most about my CP was the emotional toll it brought upon me. 

I grew up thinking and overthinking that people would dislike me for a disorder I never asked to have. I always thought everyone saw me as “lesser” and that I would have to prove myself to others. I felt like I didn’t belong. I wanted to disappear. I became quiet and to myself. Even in college, it is hard at times to let my guard down and think that someone might actually accept me. This has been the case with roommates, who I know would back me up in saying I am a shy person until I can completely trust a person. I wish I was not like this though, because I know CP wasn’t my fault, and I wish I could give people more of a chance, but it is so difficult for me.

I know that I have flaw there. I own up to that. But what I wish parents, friends and anyone with CP to know is: it is OK to emotionally struggle.

I do not think everyone is out to get me anymore, and I owe that to finally being able to accept myself as a whole person. My physical and emotional struggles are things I never used to address. I thought it made me weak to talk about it, especially since my doctors had never told me or my parents that emotional burdens would likely pop up as I grew up. But now, I have to be truthful with myself.

I was looking at the world so backwards before when I was begging and pleading for other people’s acceptance to fully accepted myself. I want to be a pediatric physical therapist because I want to help others, yet I was denying any help I needed to overcome the emotional toll of a physical disability.

I now know it is OK to talk about my struggles. People will always be there for you. I want people to know they are not alone and that just because you have a physical disability, does not mean that you are denied of living a wholesome life.

Originally published: March 6, 2016
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