If you ask Nick what his favorite thing to do in the winter is, odds are he is going to reply “skiing.” Nick was able to enjoy several ski lessons this year, and had his last lesson for the season on a chilly Thursday morning at the end of March.
Nick’s favorite parts of his ski lessons are speeding through the trees and going as fast as he can down the slopes!
Nick has been going to Eldora Mountain Ski Resort for over 10 years and taking adaptive ski lessons with volunteers who have decades of experience skiing. The volunteers work with Ignite Adaptive Sports.
Nick feels safe and secure with these volunteers, and many of them come back every year. Nick enjoys seeing volunteers he’s known for years, and he loves when they remember how much he likes to go fast!
This is another way that Nick shows that people with disabilities are able to do all the same things as a typically abled person, it just might look a little different! There are many differently abled people just like Nick who love the rush of adrenaline from skiing down a snowy mountain.
Rather than standing to ski, Nick uses what is called a sit ski or bi ski. A bi ski is used by people who need to ski in a sitting position. The bi ski is a molded fiberglass bucket seat attached to two specially designed skis. The bucket seat is designed so that it can be lifted up to get Nick on to the ski lift!
Ignite’s volunteers get special training to help them assist people of all ability levels to learn to ski. People who are blind ski differently than someone like Nick who uses a bi ski and the volunteers know exactly the best ways to assist each student.
This year skiing with Ignite was even more unique. Because of COVID-19 Ignite took many proactive measures to make sure everyone who came up to ski would be as safe as possible. This included having all students fill out a detailed COVID questionnaire prior to coming to Eldora and making sure everyone was using facial coverings. The facilities and equipment were rigorously sanitized between skiers. Normally Ignite’s building is full of excited students waiting to get out on the mountain, but this year they also limited each side of their building to one student per morning or afternoon ski lesson.
Ignite understands how important it is for people with different abilities to have the same opportunities as typically abled people. Just like Awesome in Action, Ignite works to support inclusion of people of all ability levels.
This is just one more example of how Nick and Awesome in Action are working to spark a shift in how people view abilities! Nick wants people to be aware that organizations like Ignite exist for people who have different abilities.
Nick wants to thank Ignite Adaptive Sports and all the volunteers for another AWESOME season of skiing at Eldora!
See you on the mountain next year!
To learn more about participating or volunteering with Ignite check out their website: https://igniteadaptivesports.org/
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.