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What you might not know about cerebral palsy

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by Katie Fox

Katie is a writer, a teacher, a mezzo-soprano, and a lover of all things red. She and her husband Shaun are passionate about mentoring and equipping artists of all kinds. Find her online at katiefox.net.

When I was in high school, I had a part-time job at Blockbuster Video (VHS tapes! Be kind, rewind!). One of my co-workers was a guy named David*, and he had cerebral palsy.

It was the first time I’d really been around someone with a disability. David was a typical guy in every way, except that he walked kind of strangely, and he used fore-arm crutches for support. His arms and hands were a little bit bent and twisted, making some of our tasks more challenging for him.

I thought about David when I found out that my daughter Laura* has cerebral palsy.

For many of us, there might be a shroud of mystery surrounding those words. They might seem a bit scary – or a lot scary.

They might conjure up images of severely handicapped children.

They might just represent totally new or unfamiliar territory, and you’re a little uncomfortable with the whole thing.

It’s ok; I understand because I used to feel all of those things, too. But now that I have a daughter with cerebral palsy (CP), I’m learning a lot. I’m learning what CP is and what it means, and that I don’t have to be afraid of it.

So, for this month’s Intellectual Grownup offering, I thought I would share some of what I’ve learned about CP, in the hope that I could pull back the veil a bit, remove some of the fears, and bring a little more awareness and understanding into our world.

intgrownup-bluewhite

What is cerebral palsy?

Cerebral palsy is a blanket term, which means that it covers a lot of different symptoms. With CP, the one thing that all of those symptoms have in common is that they are caused by injury to or abnormal development of the brain – hence, the word “cerebral”.

This brain damage almost always happens in utero, during birth, or shortly after birth. Sometimes parents and doctors know exactly what happened to cause the injury; sometimes, they have no idea.

seanandjena
This is Sean and Jena, two sweet siblings with cerebral palsy.

The damage to the brain can be severe, moderate, or mild. The injury cannot heal, but as the brain grows and develops, it can often learn to compensate for the injury, especially through methods such as physical and occupational therapy.

Depending on the location and severity of the injury, there can be any number of different symptoms, or “manifestions”, of the cerebral palsy. Some of the most common manifestations include problems with:

  • muscle control and coordination, including muscle tone that is too low or too tight
  • reflexes, posture, and balance
  • fine motor skills, including oral skills such as speaking and eating
  • intellectual impairment

Laura

babygirl

That’s my daughter Laura pictured directly above. We adopted her around the time she turned two. She was born twelve weeks premature, and shortly after her birth she experienced an episode of cardiac arrest and neo-natal seizures. Now she is three years old.

Her CP has manifested primarily as gross motor delays. The muscles in her ankles are too tight, which makes it hard for her to flex her feet, and so she was a very late walker.

braces

Now she wear braces on her feet and legs, and uses a walker for long distances. She goes to therapy regularly so she can learn to jump, climb, and run. Her left eye tends to turn inward, so we do the pirate look and patch the right eye sometimes, so the left eye can strengthen. She has a few other CP-related issues, such as mild constipation, and minor fine motor delays, but overall she’s doing great!

Jena and Sean

seanandjena2

This is Jena and Sean. They were also pictured above, on the boat. Jena and Sean are siblings (one biological, one adopted) and they both have cerebral palsy.

Jena was born fourteen weeks early, which caused a severe brain bleed on the right side of her brain. She experienced many gross motor delays, primarily manifesting in high muscle tone in her left leg and left hand, and low muscle tone in her core.

Now she is four years old and thriving. She wears a brace on her left leg, which helps increase the flex in her ankle, and she still has some minor struggles such as chronic constipation. She loves to ride ponies and she loves her brother, Sean.

seanandjena3

Jena’s family adopted Sean in the spring of 2012 (that’s them again, playing in the snow). Sean’s CP mainly affects his right leg, and he too wears a brace to help re-train those muscles. Sean and Jena’s parents are unsure about what caused his CP, though the MRI of his brain suggests he may have been deprived of oxygen at birth. But overall, Sean’s CP is very mild.

Layla

Layla

And this sweet girl is Layla. Layla is four and a half years old, and her parents don’t know what caused her CP. The MRI of her brain confirmed the diagnosis, but they don’t know how or when it happened.

She had some delays in her motor skills, but the primary manifestation of the CP for Layla is a speech delay and intellectual impairment. She has made some good progress lately, imitating sounds and words more and more. She is friendly and happy, she loves to swing and swim, and she is a joy to be around.

Layla2

Cerebral palsy looks different for everyone

All four of these children have CP, but it looks very different on each of them. Some of their symptoms are more mild; some are more severe. I personally know all of them, and they are some of the greatest kids ever.

They are fighters. Life doesn’t always work easily for them, but they are tough little kids who go after it with all of their hearts.

But overall, the thing to know is that these kiddos are just normal little kids.  Their disability doesn’t define who they are.

They might walk differently; they might talk differently; they might have trouble with things that come easily for other children.

(They might have to keep their shoes on at the indoor play gym because they can’t walk without them!)

But inside, they are children just like every other child in the world. 

I’m sure that some Simple Mom readers out there have children with CP, and you probably know a lot more than I do. If so, I’d love to hear from you in the comments! If not, what has been your perception of CP? Is it any different now?

*Names have been changed for privacy
For more information, see cerebralpalsy.org

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Comments

  1. avatar
    brooke wagen says:

    thanks for sharing, katie! we appreciate the chance to share in your learning and journey… it’s a help to demystify CP for all of us. and love love your girl!

  2. I just watched a teenager with CP and many issues help on a missions trip. He was a part of a drama team that went into schools.
    I’m positive that his contribution to those skits was more meaningful than anyone else’s.

  3. I appreciate this article. We know a little girl who “technically” has CP, but her doctor and parents have chosen not to widely share that diagnosis because there is such a misconception about what CP is and is not. In some ways it’s easier for her parents to talk about “delays” and “gross motor impairment” and let friends, family, and strangers learn what that looks like for themselves.

    Thank you for helping to demystify!

  4. Before being a fulltime mama I used to be an Occupational Therapy Assistant. I briefly worked with children with CP and they were such a joy to work with! Truly, some of the sweetest kids I have ever met! My husband and I also have a friend who has CP and you would never know to look at him, he walks and talks and fits everyones idea of ‘normal’. He does still have difficulties because of his CP, but a lot of the pain, high/low muscle tone and digestive problems just go on behind the scenes. He is a remarkable guy and a great friend.

  5. Thank you! I just read your post and spent a while praying for my son who also has CP. He is now 32 and was born at 28 weeks during a time when those children did not live. Not only did he live he is perfect :). Like your daughter he used leg braces and used help in walking. He did not sit until he was 14 months, rolled over at 15 months and walked at 28 months…a bit slower then most kids…right on time for him:) Over time he only needed the walker and today he has shoe inserts. He had a few surgery’s over the years to help with his legs and more so to help with feedings as he had a feeding tube for a few years. Today he eats anything he wants! I cannot say it was easy but I can say it was a blessing to raise him.

    Like you we told everyone he had CP and over time he would tell them that he has CP. Since he grew up with it to him it was the same as being left handed or having red hair…just a fact of life. I recall when he was 7 and wanted so bad to play soccer that he told us “I can stand and fall at that net better then anyone….I have done that dive a 100 times!!” In his mind he had fallen so many times that diving to catch that ball would be easy :) . He played that year and did well, mostly he taught every coach and parent what a heart of love looks like :)

    Thirty years later I can tell you I would not be the same person without having watched him grow. He found a way to do most anything he wanted to do and taught me lesson I could never have learned without him. Most of all he showed me how amazing our Lord is and how blessed I was for God to trust me with him!

    Give your daughter a big hug from this mom and grandma who knows well the joys of the good days and not so good and most of all knows the love you share.

    God Bless you, your family and all those amazing little children who are teaching us to be better parents and grand parents.

  6. avatar
    Michelle says:

    Thank you so much for sharing your knowledge and experience and taking some of the mystery and awkwardness out of relating to people with CP. Best wishes.

  7. My nephew Chris was born with Cerebral Palsy Spastic Diplegia, which meant his legs were very stiff. He could walk, but only for 10-15 minutes. He was in constant pain and had to wear splints. 18 months ago he underwent a Selective Dorsal Rhizotomy (SDR) at St Louis Children’s Hospital. After intense physiotherapy the results are nothing short of a miracle. Last year he was able to throw away his splints and sold his wheelchair. He is able to run and play and do Karate. You can find out more about SDR and see some before and after videos at his website
    http://www.teamchris.co.uk/Welcome.html

  8. Thank you for sharing. I love the pics and also the comments. God is so good to us.

  9. avatar
    Christie says:

    Thank you for writing and distributing this information. I knew next-to-nothing about CP, and since I know no one who has it, I probably would not have taken the time to research it on my own. You helped me become more knowledgeable about it and saved me time in the future should I ever come across anyone with CP or get the itch to learn more. Thank you. -CM

  10. Thanks for this post, Katie, and for the pictures and stories of these beautiful kids. I have no experience with CP, but 20 years ago I was diagnosed with Rheumatoid Arthritis; I’m a walking miracle now, but my onset was severe, and at that time it helped tremendously to know that 1 in 100 women have the same disease.

    I think with any disability, it’s good to know that there are others in the same situation who are living normal lives, even when the word “normal” needs to be re-defined. Thanks for raising our awareness.

  11. Thank you for this article. My nephew has CP. He is a twin, and he and his brother were born about 10 weeks early. His brother does not have CP. My nephew with CP just graduated summa cum laude from a very good university where he was very well liked, and which is 5 hours from his home. He has had numerous operations and has faced every challenge head-on. He is a valuable member of his family, and of society. We are blessed to know him.

  12. Beautiful pictures of cute and amazing children!

  13. Thanks for sharing, we need more posts like this for everyone out there. I knew hardly anything about CP before reading.

  14. Fantastic post, Katie! I first came into contact with someone with CP when I was a university and got a part-time job assisting an 8 year old girl with moderate-severe symptoms. She was in a wheel chair and required help to do most things– go to the bathroom, get dressed, get in and out of her chair, eat (depending on what it was). We also did physical therapy with her each morning and night, in addition to special sessions with an actual therapist, to help keep her tight leg and arm muscles being moved and stretched as much as possible. She was one of the sweetest and most positive little girls, despite the fact that her identical twin was was born without CP and was able to do all the things that she couldn’t do. I can’t imagine how hard that must have been, but you wouldn’t know it from her demeanor or can-do attitude.

    Later that year, I had the privilege of being on the university student council with a fellow student named Jeff. He walked with a bit of a limp, and his right arm had very limited movement, so he did most things with his left arm and just used his right arm to help him carry things or to support his other arm. Overall, though, he was just a regular student and a friendly guy. He fought hard to keep up with his studies, while balancing a busy role in student council, and was one of the most determined, positive guys I’ve ever worked with. You’re so right about those with CP being fighters. I agree 100%.

    Your little girl is gorgeous, btw, and she’s getting so big so fast! Thanks so much for sharing this on behalf of her and all those who live with CP! :)

  15. Thank you, I had been wondering what CP was since it didn’t seem to be the same from child to child!

  16. I have a good friend who adopted a little boy with cp when he was 5. He was in a home because his parents couldn’t care for him. He is 19 now but very handicapped everywhere but in his brain. He is so bright and says he is the same as everyone else he just cant walk.

  17. Right on! My Mom has CP and although it slowed her down, it certainly didn’t stop her. She has a Master’s Degree, has been married to Dad for 45 years, and is just plain awesome.

    Thanks for bringing this to light!

  18. Thank you so much for sharing!

  19. Thanks so much for sharing! We are walking down the foster/adopt road right now, and I’ve always been more comfortable with children with emotional/psychological disabilities than physical disabilities. Thanks for painlessly helping me rethink that idea.

  20. Thanks for posting this! My son who was adopted at 20 months also has CP. I love that you made the point that CP looks different for each kid. The comment we get most often is, “he looks normal.” I know people mean well, but it grates on me. Mostly what they see is a toddler whose CP manifestation looks very toddler-ish and his small size contributes to that. It won’t be until he gets a little older and is still taking awhile to learn gross and fine motor skills and to speak that he will stand out more or look “different”. I also think comments like that betray and unerlying bias against people with special needs. Thankfully we’re not going for “normal” in this family, but healthy, happy, and loving – whatever that looks like for us.

  21. We were blessed to adopt our beautiful daughter at birth, and shortly before her second birthday received her diagnosis of CP (spastic diplegia.) Walking this journey with her has made our life so much richer and she has taught us so much. At eleven years old, she is a talented, smart, strong and loving, lovely young lady!

    I shared our family’s experience with CP on our blog in 2008: http://garcias2chile.blogspot.com/2008/04/our-family-cp.html

  22. I want to thank you for writing this, Katie. My little boy, who’s 4, has CP. I will definitely share this so that others can read it! So often we have to rely on medical terms and such for understanding, that it’s nice when someone who is in the same situation can put it into “layman’s terms”.

  23. Thank you! My niece (30 months) was just diagnosed with CP last Christmas and we’re still learning so much. It’s great for my husband and I to hear these encouraging stories so we can be an encouragement to her parents when they need it.

  24. Thank you so much for sharing this. My daughter has mild CP as part of her global diagnosis. We try not to talk about the label “CP” too much and simply tell people that she has gross and fine motor skill delay caused by brain damage. We found that when we said “cerebral palsy” people would treat us differently or ask why she wasn’t in a wheelchair. I really appreciate this information being shared on a widely read blog. And it’s so nice to see in many of the comments people stating that they learned more about CP and feel more comfortable with it after reading your article.

  25. Katie, this is a thorough explanation of CP written in simple language. My treatment of CP and disabilities is also simple, short and thorough. In six weeks with therapeutic massage can acquire most body function delays as seen in this video.
    http://www.youtube.com/watch?v=42Mk6Hn_w9s
    Video of MP a 3-year-old boy with atonic cerebral palsy, aphasia, development and intellectual disability. (before treatment and after every week or 5 treatments during 6 weeks)

    I am a medical doctor from Bolivia dedicated to the treatment of persons with disabilities. I recently got my therapeutic massage license in Oregon, Marcelo Zurita LMT #17191. My email: neurologicalrestoration@gmail.com

  26. avatar
    Becky @ our sweet peas says:

    Yay! Thank you for sharing about CP. I have 6 year old twin boys who were born at 27 wks and both have CP. There’s is very mild with no cognitive delay. They just breezed through kindergarten, praise God.

    For one son it is a fine motor delay and for the other more of a coordination issue. We do OT and PT occasionally but in spurts (due to insurance) and then I continue the therapy exercises at home. They did serial casting for 6 weeks at 4 years old and then braces. One continues with braces while one is done for now.

    The term CP scared us at first. Hearing that your 3 1/2 yr olds BOTH have Cerebral Palsy sounds life altering and for some it is. I don’t want to make light of that. The levels of severity are extreme. For us, however it helped explain why they were having some of the issues and became an answer to our questions. Few people in our lives know their diagnosis not because WE are afraid of this term that is a small piece of our sweet boys lives but because of what people’s perceptions of kids with CP are. We don’t want them to be limited in anyone’s mind at this point. I look forward to the day when they feel comfortable telling their story. I believe that it is theirs to tell and it will be a beautiful one that proves those with “disabilities” should NEVER be given limitations by others.

  27. I loved this article and all of the comments, as well. I am a momma to 3 precious blessings. My middle child, Avery, is 7 years old and she has CP. She had a stroke during birth. She has spastic diplegia on her left side. She has epilepsy, fine motor delays, gross motor delays, visual perception difficulties, sensory processing difficulties and learning difficulties as a result of her CP. She wears a brace on her left foot/leg to help keep her heel down and stretch through the back of her leg. She has received botox injections in her spastic muscles and that has helped along with electric stimulation. She receives weekly physical therapy and occupational therapy. She is an amazing and beautiful little girl. We have learned so much through her diagnosis and her journey. She is tenacious and brave and creative and witty. She totally lives life to the fullest! It feels good to share her story and to read about others, as well! Thanks for this post.

    • My sister Karen was born with CP, due to complications during delivery, and her issues were/are very similar to what you describe above. I grew up around her friends, who often had special needs as well, but was taken back when a good friend said she had cerebral palsy—this friend has the slightest of limps and no other noticeable issues. She opened my eyes to just how diverse the CP label is.

      I often wish my mother had the gift of an online community when she was a young mother struggling without a lot of information and very few family or friends who understood CP. Thank you, Katie, for this post and Simple Mom for sharing it.

  28. I have 4 years old triplets, two boys and a girl. They were born 6 weeks pre-mature. When they turned 1 year we learned that my daughter has CP, (we never done an MRI, since I was hesitant to put her under anesthesia very mild version) but its impacts for fine motor skills, along with walking and jumping. She has very weak muscle tone. It’s a life change and constant work. She has gone through both PT and OT, curently is in massage therapy which has done miracles. Thank you for the post!

  29. Thank you for this! I shared it with my readers today. So good!!

  30. avatar
    Ariane Mardis says:

    My brother was born with CP, He had severe case and was in a wheel chair his whole life, had no control over his limbs and communicated through laughter. He always had a smile on his face. He left this earth when he was thirteen. I love reading about kids with CP and what they can do. Thank you for this post, I have been a long time subscriber of your blog but hate to say they emails usually just get deleted, until a couple weeks ago, I accidentally opened one up and started reading and it was exactly what I needed to hear that day.. I now don’t delete them but it takes me a few days to get around to reading them.. CP is a concern that is very dear to my heart. My brother has been gone for over 20 years and still miss him wildly.

  31. Love love loved this. My 3 yo also has spastic diplegia CP. She wears leg braces (almost the same as your daughter even except hers have hearts. Her old ones had the butterflies!) also but now walks ok without them. She struggles with speech and motor skills but is sharp and happy and loving and ornery too. :) We don’t know what caused her CP either as there was no trauma or anything. This article helped me with knowing others are out there and that she is exactly who God wanted her to be. Now that she’s older it is more obvious that she is “different” and I’ve struggles with how to handle that, so this post was timely. Thank you and many blessings to your daughter and the other beautiful children.

  32. I was a special education teacher for nearly 10 years and by far the students who had the deepest impact on me forever were those with CP. You explained so perfectly how differently CP presents itself…and yet every single child I’ve come in contact with has always been the sweetest, will teach you more about perseverance than you will ever know and they are so strong (in more ways than one!)

  33. Thank you for this article. I have a 5 year old with CP. He had a brain bleed and traumatic birth. He is non mobile and has no head control. He requires a lot of care but he too brings so much joy to our lives. He is beautiful and his laugh is contagious. Thank you for sharing your story and bringing awareness for others.

  34. Thank you so much for this. Laura is beautiful! As another mom of a child with CP, I know just how much people don’t understand about the condition. Keep spreading the good word!

  35. My 18-year-old daughter is a right-hemiplegic CP and she amazing!
    She was born slightly premature and developed meningitis at 9-days-old. We realized that she had a brain bleed when the doctors did a spinal tap to diagnose the meningitis. Being alerted to the possibility of CP we took her to a baby therapy clinic for the first 3 years of her life and then continued with OT and physio until she was 11 years old.
    She has limited use of her right hand and foot, but has learnt to cope so well. When strangers greet her and she gives them her left hand instead, they sometimes look perplexed and she simply says,”It’s a left-handed thing!”
    We accept that the Lord uses her weakness for His glory, and her struggles have made her a deep and amazing person.

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