What is Cerebral Palsy?
Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.
All people with CP have problems with movement and posture. Many also have related conditions such as intellectual disability; seizures; problems with vision, hearing, or speech; changes in the spine (such as scoliosis); or joint problems (such as contractures). (https://www.cdc.gov/ncbddd/cp/facts.html)
Spastic Cerebral Palsy is the most common type and affects 80% of people with CP.
A Day in the Life of Nick
Nick was born with Spastic Cerebral Palsy. Nick will be 46 years old this year.
A day for Nick looks a bit different than a day for a person without a disability.
Nick has care providers that assist him 24 hours a day.
Nick starts his day much the same way as you might: he wakes up, takes a shower, and gets dressed.
Nick has to do some things you might not have to do like take medications and do stretches of his entire body. Some of the medications Nick takes help with things like his breathing and spasticity in his muscles. The stretches Nick does twice a day help reduce spasticity in his muscles and help him move easier.
Nick uses a power chair to get around. Nick uses his power chair like you would use your legs. Like other people who use a wheelchair on a daily basis, accessibility is very important to Nick. This means he has to pay special attention to making sure he has accessible parking as well as scoping out wheelchair ramps and sidewalks, especially at new places. This adds another layer to how Nick gets around every day. Nick’s home is accessible for him and includes ramps in his garage and outside his front door.
During the day Nick works on his business, Awesome in Action. He works to spread awareness and inclusion for people with intellectual and developmental disabilities in his community. Nick’s work is just as important to him as your job might be to you. Nick finds purpose in working to advocate for those with different abilities. One of Nick’s favorite parts of his job is working with children in his community who may not have much experience with people with disabilities.
Something that’s different during Nick’s work day is that he doesn’t take a lunch break anymore! Nick is not able to eat food by mouth and has a special pump that delivers food to him all day. Nick still loves to go to restaurants or have dinners at his home with his providers and friends. It’s all about the atmosphere!
Twice a week, Nick participates in Language Therapy where he works to use his speech device to communicate more effectively. Nick’s speech device is his voice. Nick loves to tell jokes and tell stories about his life and friends. Nick’s device uses picture and word association to help him navigate to different parts of his device like people’s names and locations. This means that it can take Nick a little longer than an average person to complete a thought or finish a sentence, so it is important to Nick when people have patience and let him finish what he wants to say.
Nick enjoys activities that you might like as well. Nick loves to shop, especially at the ARC Thrift Store! Nick enjoys spending time with his friends, going to church, watching movies, listening to music and looking at social media. Nick has gone on rides at theme parks around the country, has ridden in a hot air balloon, and loves going skiing at Eldora in the winter with Ignite Adaptive Sports!
Nick has an adaptive vehicle that makes it possible for him to get around. He loves going to the car wash!
Like all of us, Nick enjoys spending time by himself as well. Nick is able to use his hands well enough to spend time alone in his room, where he enjoys listening to his large collection of cassette tapes. The cassette tapes are just the right size for Nick to be able to manipulate them and use a tape player on his own. Nick calls this his “room time” and just like you, time alone to decompress and gather his thoughts is very important to him, especially after a long day of work.
When it’s time to call it a day, Nick needs help getting to the bathroom, brushing his teeth, and getting into bed. Nick has a provider spend the night with him every night to make sure he has everything he needs. Nick uses oxygen at night to make sure his lungs are getting as much oxygen as they need to function appropriately.
In many ways Nick’s day looks just like anyone else’s but he just needs a little help with some tasks and activities. His days are still full of fun, laughter, and new experiences just like yours.
There is no cure for CP but there are many therapies and medications that make living as a person with CP easier.
March is Cerebral Palsy Awareness Month, and the U.S. National Cerebral Palsy Awareness Day is March 25th, 2021. This helps spread awareness about CP. Wear green in support of Cerebral Palsy Awareness Month. Green represents new growth and inspires a renewed life.
Do you know someone in your life who has CP? Reach out to them and find out more about their lives and what you can do to help spread awareness about CP.
North Atzlan Center
On August 17th and 18th Nick and the Awesome in Action team participated in Fort Collins Comic Con for the 3rd year.
This awesome event brings creative people from the community together to share ideas and creations with participants.
Nick’s booth was used to show that anyone can be a hero. Nick helped kids make awesome superhero masks and posed for pictures. Nick made sure to help everyone who visited his booth understand that they have superpowers that make them special.
Nick really enjoyed seeing all the creative and fun costumes and getting to dress up himself! Some of the costumes were scary, but Nick showed his superpowers by keeping calm, cool, and collected when something scary walked by his booth!
Nick presented a panel on Saturday, where he gave his Anyone Can Be a Hero speech. He talked about his struggles and challenges as a person living with Cerebral Palsy, and how he overcomes his challenges and finds his inner superhero.
The organizers of Comic Con have always been kind and welcoming to Nick and his team, and helped make the Con as successful as possible for Nick. Nick had so much help and support to make this event a success and he wants to send a special thank you to his team, the Comic Con team and Nick Armstrong, and Annie Schubert who helped Nick with his panel.
The impact Nick made on those who stopped by his booth was pretty clear, and Nick was happy to make some really great connections with others in his community who want to help spread his message.
Comic Con was a success again this year, and Nick is excited and ready to start presenting in classrooms for the school year.
If you or someone you know is interested in having Nick come to your classroom or event to offer one of his many presentations, please contact him via email at firstname.lastname@example.org.
Nick’s presentations can be adapted to any situation and age group, and his message of inclusion and diversity is appropriate for all ages.