What does having Cerebral Palsy entail?

Fatigue, there are days where all you do is lay in bed. Medications, which for me entails baclofen three times a day, and Prozac for anxiety and depression once. Lots of physical therapy, stretching your muscles is vital. But PT can also help in other ways, like learning how to ride a bike. Pain in your back, hips and muscles, that can sometimes keep you up at night. Doctors appointments, they never end. Injuries, that can pop up suddenly and stay for a while. Battles with insurance to get medical equipment covered. My insurance will only cover 60 percent of my custom lightweight rigid wheelchair. Fighting to get care; most doctors will tell you try this, or go see this other doctor. It’s a never ending loop.

What are your thoughts on the term “special”?

I am not special. My needs are not special. Nor am I “disabled” I am a person living with a disability.

What type of Cerebral Palsy do you have?

Spastic diplegia

How severe is your disability?

Mild to moderate

Do you have other related conditions?

Hip dysplasia

On a scale of 1 to 10, how much impact does Cerebral Palsy have on your life?

6/10

How does having Cerebral Palsy affect your day-to-day life?

I start my day by taking baclofen, depending on the day I’ll head to physical therapy in the afternoon, where I will have my muscles stretched.

Have you experienced any sort of stigma for having Cerebral Palsy? Did that take a toll on you? How did/do you deal with it?

My CP was caused by a stroke at birth. I once had a old lady come up to me in the grocery store and ask “why I walked like that.” She then told me I was too young to have a stroke, and that having no cartilage in her knees was worse that have a stroke.

What’s your preferred choice of transport or assistance?

My right hand man, so to speak is a wheelchair. It allows me to still get out of the house on days I really don’t feel good, it allows me to be active. It also allows me to be able to go to big events, that I couldn’t go to if I had decided to not use the chair.

Do you ever feel like people underestimate what you’re capable of because of your disability?

Yes, people will often try to talk to my companion instead of me. When I was a percussionist/in drumline in my junior and senior years of high school, i was excluded because of my disability. It turns out the people on drumline would say terrible things about me because of my disability.

Is there anything that having Cerebral Palsy has prevented you from doing that you really wish you could do?

Playing sports as a kid. I did manage my school’s volleyball and girls basketball team instead, which was awesome. Joining the military, if it were up to me I’d be a physical therapist for the army. But, I’m going to have to be a civilian physical therapist for the military.

What is your general outlook on your disability?

Growing up, it was something that I just ignored. But as I got older, I could no longer ignore it.

Does Cerebral Palsy affect your mental health?

I take medicine for anxiety and depression, and go see a therapist twice a month.

How did/does Cerebral Palsy affect your education?

I went to an inaccessible high school, and ended up in a wheelchair halfway in my senior year due to a hip injury. It was less that ideal. When it came time to pick a college, I went with the school my parents are alumni of. They pride themselves on being an accessible school, but the layout of the campus is not wheelchair friendly at all. During this time period I was getting accommodations set up, and I chose to go with a wheelchair accessible room. The people I were supposed to room with, quite literally refused to switch rooms. Despite the fact that none of us had ever stepped in the dorm room we were originally supposed to be in. So I ended up at my local community college, and am doing the prerequisites for physical therapy assistant school, with the end goal of earning my DPT and becoming a physical therapist, who specializes in neuro and pediatric PT. I also want to become an assistive technology professional.

How does Cerebral Palsy affect your career?

I was often discriminated against at the job I held during my senior year of high school, because of my disability.

If any, what kinds of medication do you use? How effective are they?

Baclofen, it’s not as effective as it was when I was younger, at relaxing the muscles. So we’re beginning the process of Botox injections.

What did your parents do right and wrong, in raising a child with Cerebral Palsy?

I was never around people like me, because I pushed myself to be normal. My parents wanted me to be normal, so I never had the opportunity to be around others who get it. But as I become a young adult, I’m beginning to explore adaptive sports, and other opportunities to meet people like me.

What are misconceptions about Cerebral Palsy?

That it’s only a thing that affects children. It is a lifelong disability, and I wish there was more awareness about that.

What do you find is the biggest challenge of living with Cerebral Palsy?

People don’t get it, it doesn’t just go away once you turn 18. The lack of adult treatment options is a real issue.

What are things to NOT say or do to people with Cerebral Palsy?

“It’s not that bad” “I went to physical therapy for my knee one time, I know how you feel “ “can I pray for you” “I was in a wheelchair once”

What do you think society could be doing to better serve people with Cerebral Palsy (and disabled people in general)?

Go above and beyond what the ADA requires. Even with the ADA laws, it’s still difficult to get around sometimes.

What would you like people to know about Cerebral Palsy?

It’s a lifelong thing, and your symptoms change over time