World Cerebral Palsy Day!

Today is the very first World CP Day! I’m ecstatic that there’s a day dedicated to the amazing individuals who are living with CP and the families & friends that love them.  From the National Institute of Neurological Disorders and Stroke website:

The United Cerebral Palsy (UCP) Foundation estimates that nearly 800,000 children and adults in the United States are living with one or more of the symptoms of cerebral palsy. According to the federal government’s Centers for Disease Control and Prevention, each year about 10,000 babies born in the United States will develop cerebral palsy.

Despite advances in preventing and treating certain causes of cerebral palsy, the percentage of babies who develop the condition has remained the same over the past 30 years.  Improved care in neonatal intensive-care units has resulted in higher survival rates for very low birthweight babies.  Many of these infants will have developmental defects in their nervous systems or suffer brain damage that will cause the characteristic symptoms of cerebral palsy.

It’s really troubling to me that the rates of cerebral palsy have stayed the same for decades. It’s the 21st century and I have yet to get answers as to what exactly caused cerebral palsy in Caleb but not Wyatt, given that they’re identical twins. I’m relieved there’s a dedicated day to bring these issues to light. United Cerebral Palsy (UCP) is putting on a CP Challenge where groups of four monitor their exercise activities (walking, biking, swimming, etc) for the month of September and raise money to support UCP. Because this is all very new to us, and we’re unclear as to where donated funds are going to be spent, we’re sitting back and observing this year’s challenge. Our hope is to get a number of teams registered next year!

The actual theme for this year’s CP Day is “Change My World in One Minute.”  People are asked to submit minute-long videos describing an idea that would change the way a person with CP would live their life. Some of these ideas  are really great, like cars that allow the driver or passenger to remain seated in his wheelchair or an annual convention for people living with CP to meet, share tips and build friendships. Check out the website and a few of the video submissions!

I really racked my brain trying to come up with an idea but I feel like we’re still so new to the cerebral palsy community. At 14 months old, Caleb doesn’t require any assistive devices and plays with the same toys as his brother since he has great use of his hands. He gets around in a regular stroller and a regular car seat so there aren’t many modifications that would make our lives easier right now.

Then I thought, what worries me most? Caleb is an awesome kid but secretly I worry that he won’t be accepted by his peers when he’s in school. I worry that the way he might walk will cause others to stare. I worry that he’ll come home crying because his CP has held him back from doing something he wants to do. Luckily, he’ll always have Wyatt at his side. But besides preparing my child and helping him be independent and confident, there’s nothing that I can do to control the actions of others. That’s where you come in. If you have children, regardless of age, I’m asking you to talk to them about kids who are different. Tell them that some kids walk differently, talk differently or have a hard time doing some things that they do very easily. Tell them that these kids are the same on the inside and would love their friendship. Teach them to stand up for kids who are different because that’s the right thing to do. And please, let’s not pity those who are different, just treat them how you’d like to be treated! Just like that, you can change Caleb’s world in one minute.

I’m linking up today with other bloggers who have a CP connection so feel free to check them out as well!

Happy World Cerebral Palsy Day!

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I'm a working mom of three fantastic boys: Caleb, Wyatt and Parker. My husband, Shane, and I live in the Washington DC suburbs where we enjoy playgrounds, pools and never getting to sleep in. This blog is a journal of our day-to-day lives as well as a chronicle of Caleb's progress after a recent spinal surgery to alleviate the effects of his cerebral palsy.

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11 comments on “World Cerebral Palsy Day!
  1. Melissa says:

    I believe that having a twin really helped shape my experience with CP in a positive way. I hope it helps Caleb is well. I wrote a small piece about advice I would give parents of children with CP here:http://www.disabilityandido.blogspot.com/2012/02/importance-of-disability.html feel free to check it out. Or not. 🙂

    Melissa

  2. Mary Ellen Rathbun says:

    As a double amputee I used to worry I would scare the kids – but I found out that if I say something like “Gee my legs look funny or wow did you see my robot legs” that the kids were not afraid. Kids ( and many adults } are afraid of people that look different. But I have found if you show them you leg braces for instance, and let them touch them and ask many questions they are no longer afraid. My advise is to not hide Caleb’s differences ( whatever they may be } but ingage people ( and espically kids ) in Caleb’s dissabilities and educate them to all he can do. And I think you will find how much the other kids will want to help Caleb. Caleb is going to do great – look at the great parents he and Wyatt have!

  3. I couldn’t come up with anything to submit either. And kids making fun of my son is my biggest fear for his childhood. I take heart knowing his twin will have his back at school.

  4. Thank you for your amazing blog and sharing your families story! Have a great day. Jennifer

  5. Your son is adorable! I love his glasses! Coming to your blog by way of Love That Max. My boys don’t have CP, but one has autism and one has Marfan syndrome. I worry about the teasing too.

    • Thanks so much Maya! You definitely have a couple of cuties of your own! Admittedly I admittedly don’t know much about Marfan Syndrome but have already learned a few things from your blog! Keep it up!

  6. Bron says:

    What stood out the most for me when reading all the ideas on the World Cp day site was how different the ideas were based on being a parent or an individual with Cp, just shows how as patents we are traveling a very different journey x love the pic of Caleb!
    http://coopsnpeps.blogspot.com.au/2012/09/world-cp-day-september-4-2012.html?m=0

  7. Brigette says:

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  9. Alex Martin says:

    Hello,

    My name is Alex Martin and I am reaching out because I noticed you have a lot of helpful information listed here for families who are caring for a child with special needs. I am wondering if you would be interested in adding ViaCord (www.viacord.com) to that list? They’re treating cerebral palsy with the umbilical cord blood cells they collect from newborns, and have a wealth of information on their site, including research details that I encourage you to check out.

    I truly think this resource for treatment would be a great benefit to your visitors, especially because of the wide range of topics you cover.

    Thanks so much and please let me know if you have any questions.

    Alex

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