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!