Tuesday, June 30, 2015

Life as an adult with cerebral palsy: a guest post


This post is by Kyle Khachadurian, Community Coordinator at the Cerebral Palsy International Research Foundation and a generally great human being.

Okay. Here we go. 3, 2, 1. Aaaand wake up. Eyes open? Good. Now sit up. God, why am I so tired? I’ve been awake for 30 seconds and I already am feeling the weight of the day on my body. Get out of bed. Find your balance. Dammit, I always stumble out of bed. Now walk to the bathroom.  Let the day begin.

That’s how I start every single morning. I have mild Cerebral Palsy, and because of it my mornings suck.

But the rest of my life isn’t so bad.

Cerebral palsy is a condition that affects 1 in 500 people. It’s used as an umbrella term for a variety of disorders that manifest themselves in different ways, usually caused by some kind of brain damage either before, during, or shortly after birth.  But if you’re reading this blog, I’m guessing you probably know that.

People with CP all have that one moment. The one where we realize “I’m different.” This happens to each of us at different points in our lives, but it’s the first step on the journey of our acceptance of our disability.

I was one of the lucky ones. My moment was in nursery school when I realized everyone was just like me. I suspect my parents’ intention of putting me in a special nursery school was supposed to make me feel like having a disability was normal, but that didn’t keep me from noticing other people were very obviously not like me even if these people were.

At age 3

Growing up, I was placed in a school for people with physical disabilities. I was among the few in the school who could walk, and so I immediately felt out of place. But how could I? The vast majority of the students there had CP, so why did I feel out of place? 

Because my cerebral palsy is so mild, I don’t share many of the same struggles as people with a more “severe” case of CP, but mild CP does come with its own set of challenges. It’s very difficult to “see” my CP, and if you know nothing about it, you probably won’t. Everyone with an invisible disability has heard the phrase “you don’t look disabled”, as if the observer’s incorrect assumption somehow trumps you talking about your disability.

My entire life changed when I went to college. My whole life I had been coddled, and I wasn’t even aware of it. My grades were terrible because I had no idea how to take notes. I had no friends because I’d grown up in an environment where friends were just “given” and not made. I had no idea how to socialize because I’d hardly ever spoken to anyone without disabilities before.

I remember when I made my first friend. I was so excited that the first thing I did was call the girl I was dating at the time and let her know. She didn’t understand why I was so excited. When we had our first conversation, my friend apologized for walking quickly. I remember thinking he saw my limp and noticed I was disabled, so I told him that I had cerebral palsy. That was when he told me that people tell him that he walks too fast all the time, and that he had no idea what I was talking about.

Oops. I just outed myself as disabled. I’ve never had that problem before. He’s going to think I’m strange now. But he didn’t. He just asked questions. “What is CP?” “Did you always walk this way?” “So, can you have sex?” “Is your girlfriend disabled too?” At first I was taken aback by his bluntness, but I learned very quickly that he was asking because he genuinely wanted to know me.

After college, I landed an internship at United Cerebral Palsy (UCP)’s national office in Washington DC. I stayed with a friend in Maryland who had CP “like me”, and it was during my time there that I learned something about myself that changed my life. I was living every single day in pain and I didn’t even know it.

When I was a kid, I had various orthopedic surgeries to help improve my walking. Anyone who’s had orthopedic surgery knows that when it rains, your bones sometimes ache in the affected area. I asked my friend to give me an aspirin for my “CP pain” because it was raining. She laughed at me, gave me a pill, and said “you don’t take aspirin for CP pain, you take this!” So I did, and the feeling was like getting your first pair of glasses late in life. Except instead of “oh my god, the trees have leaves!” it was “oh my god, the world doesn’t feel heavy!”

I didn’t know the world wasn’t heavy until that day, and I didn’t know the heavy feeling was actually chronic pain. The drug my friend gave me was called Tramadol, and I now have my own prescription. Later I would learn that half of people with CP have some form of chronic pain, and that almost nothing is known about it.

Now I work a full-time job at the Cerebral Palsy International Research Foundation in New York City. My life, for all intents and purposes, is “normal” as can be. I take the subway to work, I come home, I sleep and I do it all again the next day. If you saw me on the street, you’d likely never know that I was different, and that’s something that a lot of people with CP cannot say.


If you’re a parent of a child with CP, know that even though you won’t always be able to be there for them when they grow up, the best thing you can do is to teach them to self-advocate. I cannot stress this enough. Teaching your child to speak for himself will have an enormous impact in his life. There will be times when your child is going through things that you are incapable of understanding. That’s okay. Sometimes we just need someone to listen to us. If your child with CP is already an adult, let them be an adult. Having CP isn’t the worst thing in the world. For us, it’s the only world we know.

Finally, you’re doing a good job. We love you, and we know that caring for someone with a disability is probably just about as weird as having one. 

24 comments:

  1. Thanks so much for the guest post Kyle! My little boy is almost 2, also with mild CP, and I hope one day he is giving back to the community like you are. I'm sure your parents are very proud of you :) thanks for hosting him Ellen!

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  2. Do you ever get "But you don't..." remarks? As an autistic flutist and student, I get them a lot.

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  3. I'm so glad you gave Kyle the opportunity to share his experiences, because I think it's so valuable for parents of kids with disabilities to hear from adults who have disabilities. I relate to this on the whole, but had the opposite schooling experience because I was mainstreamed after pre-school, and was in a regular public school all the way from K-12. Interesting how school experiences shape so much of who we are.

    (And as a side note, you picked an awesome person to write this piece...and I'd say that even if I wasn't a little biased. Kyle is one of my best friends!)

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    1. Lucky you, Emily, to have Kyle as a friend. FYI: Kyle picked ME. So lucky me, too! I can't agree more, it's awesome to hear from adults with CP. I often wonder about Max not being mainstreamed, but the school he is in works for him.

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  4. Thank you for posting this ! I am an adult living with mild CP <3 It is great reading others stories.

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  5. I was mainstreamed in the days when it wasn't politically correct, but I think it was the best thing because it exposed me to the "real world" & proved to others that a physical disability doesn't automatically equate to a cognitive one. My CP isn't as mild as yours so I get the "You don't look......" until I start walking.

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  6. I am 21 and i have CP. I was always mainstreamed because we don't have special schools in Italy. I can only walk on crutches so everyone could tell I was different and sometimes people treat me like a 2 year old. When I was younger my parents made me believe I would be able to walk and run like the other kids when I grew up, but obviously I couldn't so I felt as if there was something wrong with me. I thought it was my fault and I was not trying hard enough. Then I met successful adults with disabilities and they helped me accept it, I started using the chair and now I wouldn't even want to be able bodied because I realized cp has given me more than it had taken. Thank you for hosting this post, I love it!
    To Kyle: I totally get the morning struggle! I wish I could just hop on my chair instead of trying to drag myself xD
    I have a question for you: Was the pain very bad when you started taking meds? I have never taken anything. I often feel my legs are stiff, especially when it's cold but I don't know if I could call it pain because I have never known anything else.

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    1. Dear Ila,

      I have a daughter of 12 years old and she has mild CP. We live in Italy for 7 years and i find the information here is very limited. I would like to ask if it is possible to have your contact so we can Exchange information. Thank you so much for your attention and I look forward to hearing from you.
      My phone number: 346 704 0970
      All the best
      Linh

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  7. Hey. My name is Angie. I am 40. I have cp and it only effects my legs. I went to a private school until I was in the 10th grade. It was the worst experience. I had teachers and guidance counselor tell me I would not be able to go to college or get married. I did extremely well in school and did go to college. I have been married 19 years .I have a daughter who is 16 and going to be a freshman in college in August. My son will be 15 in two weeks and will be in the 10th grade. I do have chronic pain, osteoarthritis and degenerative arthritis in my body but I keep going. This is God's plan for my life. I have taught my children growing up God made everyone different and special. Parents of children with cp encourage your child to do whatever they are able to do. You can go to school. You can get married and have children. I consider myself a blessed woman.

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  8. This is a great post with a ton of great insights into mild CP that not even I was aware of like the chronic pain issue. I have mild spastic diplegia CP and have never had anything more than growing pains. I happen to believe exercise and a healthy body alignment has at least in part, prevented me from having pain. I was mainstreamed, then home schooled and it taught me to be completely independent. In case you are interested I have written 3 films called "Drama Sighted", "Only Those Who Limp Allowed" and "Crips Not Creeps" about my experience as a person with mild CP because I felt the media did not represent people with mild CP enough. The characters with CP are played by actors who have mild hemiplegia in real life. You can read about and watch my work on my website here http://cripvideoproductions.com and my blog here http://cripvideoproductions.tumblr.com

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  9. Hi!! Good to hear your story. I'm 48 years old and have mild CP. My chronic pain started really kicking in about 8 years ago. Rarely do I hear about adults with CP. Due to me surgeries as a kid and my spasms have arthritis pretty much up my neck and both hips. I've been very productive: masters degree, married 12 years and two little girls who are old enough now to hold my hand walking down stairs so that I don't fall. I'm on disability now doe to pain and weekly falls. I should use a cane or a walker but not willing to give up sex appeal. I will soon because broken hips aren't very sexy!! We should start a facebook page or yahoo group. Walking CP club... I'm wondering if you've concidered the baclophen pump. It's been offered.... Scary to me. Do any of you have thoughts?
    Thank you so much for your posts!!!!

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  10. An adult with mild cp I totally relate about asking for aspirin. When I was given bacoflen for first time at 42 I was omg this is what loose feels like azing.

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  11. Hi,I'm 63 years old born with a mild cp ,effects my right side,but I have accomplished almost everything I wanted to do ,very strong willed .i have been married,raised 3 healthy sons by myself,went to college,my job was working with the disabled adults as a Rehabilatation Specialist,love my job for 20 years,now retired with grandchildren and great grandchildren ,and training my 4 dogs,all this keeps me busy and able to go ,I do exercise three times a week ,that helps me a lot,all things are possible with God by your side.

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  12. Interesting to read another's story. I have mild hemiplegic cp and was never treated or told that I was disabled (at least by anyone with any influence) and I've never considered myself as such. I went to public school, college, now I'm an RN, married, mother of 3. I did have ot and pt as a child and a couple of heal cord lengthening surgeries and I remember falling down quite a bit as a child.

    People recognize it and patients often ask if I have arthritis or have had a stroke. I try to just keep it matter of fact, as I don't really want to dwell on it. The internet has made it interesting to find others out there like myself.

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  13. Endless thanks Ellen for the opportunity to share a blog link here. My hope is that sharing how I improved my top communication strategies by learning from one of my "speech kids" will also help other parents who are struggling with their kid's undesirable behaviours. ~Keri

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  14. I'm in tears. Finally! People who understand!
    I was diagnosed with spastic monoplegic cerebral palsy shortly after I started walking.
    Nobody told me that 35 years of favoring my right leg over my bad leg would cause me issues. But it has. I used to be able to walk a mile and a half worth no issues until I sat down. (Holy muscle twitches, Batman!) Now I'm near tears a tenth of a mile in.
    I was always told I wasn't a morning person. I always wondered how others could just hop out of bed and run to the bathroom without stumbling into a wall. (I swear the walls jump out at me) My leg drags behind me until I'm truly awake. And my limp is much more pronounced than it was when I had tendon lengthening surgery at 18.
    I have so many questions. But really nobody to ask.
    Is there maybe a Facebook page for us?
    Thank you so much for this blog post. I don't feel so alone.

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  15. Hello I was told at age 30 that I have CP.I found out through a foot specialist. I had a heel spur. I argued with him because my parents didn't tell me. They didn't want me to use my condition as a crutch. With that being said, I had to mentally digest the news. I am sore a lot. Sometimes it hurts to even move. I used to be an active exerciser, but lately I just don't feel like it. This blog helps me a lot. I'm not the only one!!

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  16. Inspiring to read this. Our son was born 2 months early and has minor CP as well. We've had him in PT, OT, and ST weekly for about 3-4 months now. He's 16 months and showing tons of improvement.

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  17. Do adults with mild CP require surgery or physical therapy?

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  18. Hi I was born at 26 weeks so my mom always told me I was a miracle. Yadda yadda well today my neurologist who I was seeing matter of factly said "Laura, you have CP and this is why you are having such a hard time with balance". He said thus is permanent but with PT you can manage it. You also need to be extremely careful walking.

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  19. Thanks so much for sharing this. I've been having a difficult time. I'm dealing with the affects of aging with a mild form of CP. pushing through this phase isn't easy, but it helps to hear from someone who lives with the same struggle and has navigated the changed successfully. I know my friends and family mean well, but they can't fully understand how hard this is for me. Anyway, thanks again.

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Thanks for sharing!



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