Growing Up With Cerebral Palsy
Cristina and Mark Share Stories and Advice From Their Childhoods
- By Elisha Bury
- Jul 01, 2012
When Cristina Abreut was born in Cuba in 1964, she didn’t have much hope for a normal childhood. Before her first birthday, her parents took her to the doctor to find out what was wrong with her, and the doctor told her parents to leave Cristina on top of a big hill and let God decide.
But Cristina’s parents had bigger plans. They wanted to go to the United States where Cristina could have as many opportunities as possible despite her disability.
So when Cristina was 4, the family left Cuba. They had nothing with them except the clothes they were wearing. Once they arrived in Mexico, the family boarded a bus and drove for 22 hours with no food or drink. Cristina remembers crying the whole time because she was hungry. Then mom, dad and Cristina crossed the Rio Grande on foot and made their way to Miami.
“CP didn't stop me from living a normal life. I attended birthday parties, church, the park, and vacations to the beach and Disney,” Cristina says. “My mom told me from a very young age that I could do anything I wanted, and that has helped me cope and deal with my CP.”
Coping With CP Symptoms
Mark Smith, who was born in 1971, had a much different childhood. His parents divorced when he was a toddler, and his mother struggled with substance abuse and mental illness. Mark remembers his father expressing shame about his disability, and his mother blamed him for the divorce and her substance abuse.
"My family, due to substance abuse, divorce and so on, wasn't emotionally equipped to raise a child with multiple forms of severe cerebral palsy, including spastic, athetoid and ataxic," Mark says. "I had no coordination, motor skills or speech development."
Although Mark says his mother did the best she could, his earliest memories are of being trapped in whatever spot in the house he was placed.
"Imagine being a 3-year-old, looking at a big, red ball across the room, knowing that you could never get it. Such moments, at such an early age, can devastate the spirit," he says.
To top it off, his mother was convinced he should stand, and a special standing device was designed for him. The padded, wooden box squeezed his body into a standing position and caused him a lot of pain, he says.
"While the stander had no positive physical effects on me after years of use, it taught me the importance of accepting our physical traits and not trying to force one's body to meet a 'normal' standard," Mark says. "Meeting others' expectations shouldn't hurt, not physically or emotionally."
At age 5, Mark's therapist let him try out a power chair, and his whole world changed. For the first time he was able to explore the world around him—and get that red ball all on his own by simply pushing a button.
"Simply being able to move on my own changed the rules of the game. I could go outside. I could go to school, and, hopefully, I could even make friends. In my mind it wasn't a power chair; rather, it was a magic carpet that could take me into a world of possibilities."
Cristina had involuntary and spastic movements in her left arm and leg that make walking hard, but she learned to walk with the help of a long-leg brace and a walker. Cristina says she always felt her leg was crazy.
Unfortunately, Cristina didn't have a power wheelchair when she was younger because she didn't have access to Medicaid or any programs to help her family pay for medical care or equipment.
"My first wheelchair was from an old lady that had died," Cristina says. "My dad took the chair to Easter Seals and exchanged it for one that was my size."
Cristina didn't get her first power chair until she was an adult, and she had to fight for it. She says that if more equipment had been available to her when she was younger, she would have been even more independent.
"I am sure that I could have benefited back then from mobility equipment, but there was no way to get it," Cristina says. "I believe that parents of children with CP need to be strong advocates and fight for any equipment their child needs. There are so many helpful devices today that if accessed early on can make a huge difference in their life. If proper splinting, braces and mobility aids are used, many deformities and future problems can be avoided."
Mark says that although children can't advocate for themselves, he realizes that even as a child he knew the standing device was not right for him and that he should have had a wheelchair sooner. In fact, the power chair did more for him than allow him to move on his own; with that freedom he also began to indirectly speak up for himself.
"Even as children, we often know what's best for us or what's hurting us, and although it takes courage and emotional health, we have to speak up," Mark says. "We often know our needs, limitations and abilities better than anyone else, and it's so important that we speak up, even as children. And, for parents, they have to listen to their children."
Getting an Education
When it was time for school, Cristina was placed in special education classes in public school and paired with other students with the same intellectual ability. She says she learned very quickly in elementary school. Cristina also rode a public bus with a wheelchair lift.
"Even though I knew I was different, it didn’t stop me from having a normal and happy life. To be honest, I have never really felt disabled," Cristina says. "I think that kids are kids no matter if they have a physical disability or not."
In her last year of middle school, she encountered a difficult teacher who only played games and didn't teach any of her students with disabilities. Cristina was frustrated. Fortunately, when she got to high school, one of her teachers, Mr. Passman, recognized her ability right away.
"He gave me so much homework like a normal teenager and shaped my future by preparing me for college," Cristina says. "Also, I was pushed by him to take a test to get my regular high school diploma."
Cristina is very proud of earning a high school diploma instead of a special certificate.
After high school, Cristina went to college to earn an associate's degree in computer science. Unfortunately, when she was only a few credits away from getting her degree, the college took away the aide who helped her take notes and write her exams. Her mom and dad couldn't help because their English wasn't strong enough. Cristina was forced to drop out. Back then, online classes were not available.
In California, special education classes did not exist for people with severe disabilities. Mark, who was equipped with a power chair and a high IQ, was mainstreamed into public school at age 7. He recalls having no support services and that no one—neither the teachers nor the students—knew anything about disabilities.
"I was an alien dropped onto a foreign planet," he says.
Mark knew that if he didn't succeed, other students would not have the same opportunity. So he bought a thrift-store typewriter and taught himself to type because he couldn't write with a pen or pencil. Mark then started to educate his classmates and teachers. Gradually, the impossible days became easier.
He later earned a college degree and attended the San Francisco State University's Creative Writing program, where he worked with the best writers in the country.
"It was a lot like being in elementary school all over again, where failure wasn't an option," Mark says. "I commuted three hours each way on public transit, worked at an English tutoring center and wrote freelance to pay the bills. I literally ate only hot dogs because they were all I could afford. It was all hard and fantastic."
That time also proved to be very healing for Mark because he was forced to deal with his feelings through writing.
Head of the Class:
Mark has published hundreds of essays and articles and five books. He also writes for his own Web sites: WheelchairJunkie.com and PowerchairDiaries.com. Mark has worked at Pride Mobility/Quantum Rehab, a company that builds wheelchairs and other mobility products, for 11 years. As a power wheelchair user, he is able to help the company create better mobility products. Mark also works one on one with people who use the equipment.
The Best Advice
Cristina has happy memories of her childhood because her parents never treated her like she was disabled. They encouraged her to do anything she wanted to do. Cristina thinks that kind of support is really important for children with CP.
"I advise parents with disabled children to be strong and accepting of their child. Never feel sorry for them in front of them. Instead encourage them in all areas of their life, and try to treat them as normally as possible," she says.
Cristina also has some advice for children with CP: "Surround yourself with friends, family and teachers that know you very well and encourage you to do everything you can. Also always work hard in your therapy, and don't be afraid to try anything. Now you have the opportunity to have computers and other devices that will help you make a better future for yourself. If someone ever tells you that you can't do something, don’t believe them and try it anyway."
Mark says people with CP need to find their passion, which is easy if they simply look at what they love to do.
"Do what you love and do it without compromise, even when times seem bleak—I can't tell you how many rejection letters I got while writing in the early days," he says. "And eventually your passion will become contagious, and success then follows."
But none of this advice matters until you understand that your disability is not what defines you as a person.
"CP is a condition that you have, and it does not have you," Cristina says.
Mark agrees. He thinks children and teens with CP have the same needs as every other child or teen: understanding that they are enough.
"You're capable enough. You're smart enough. You're beautiful enough. You're handsome enough. And you're strong enough," Mark says. "Life is like climbing mountains. Some people face small ones, and maybe you're facing Mount Everest. But remember, you are enough to climb it, and when you make it to the top, you'll have a perspective like no other!"
The Power of Therapy
When Cristina Abreut arrived in Miami from Cuba in 1969 she went to the United Cerebral Palsy center for physical therapy (PT) and occupational therapy (OT). It was in these programs that Cristina learned to use a spoon and drink from a straw; she also took her first steps with the help of her parents and therapists.
Within six months of attending the center, Cristina was speaking English, and she enrolled in a special preschool and later went to public school.
But when Cristina was in high school, she had to stop attending PT and OT. Her choice was to attend therapy or attend classes where she would learn enough to go to college. So Cristina made a very difficult decision and missed out on therapy until she was 35.
In 2000, Cristina enrolled in the Medicaid WAIVER Program that covers services such as PT.
"I decided to put all that I had into restarting my therapy no matter if I was 35 years old," Cristina says.
It was at this time that Cristina met Julie Lann, a registered physical therapist.
Lann said that although Cristina's parents were diligent about making sure she was stretched, Cristina's muscles were very underdeveloped. She had lost the ability to stand, and walking, even with assistance, was next to impossible. In addition, transfers were becoming a problem.
Fortunately, Cristina's body responded to therapy, and in just a short time, her strength and control improved greatly. She regained the ability to walk with assistance from Lann.
Around nine years ago, Cristina also found a Rifton gait trainer that gives her enough support to walk. She is also involved in Sky Medical Inc.’s trial for the TAOS (Therapeutic Ambulatory Orthotic System) II adult gait trainer. (Gait trainers enable people with plenty of leg and abdominal strength but not enough balance to stay upright while walking.)
Lann says that missing therapy for a long time can cause stress for people with CP and their caregivers.
“That lapse makes it harder for the parents to manage them (and) makes it more frustrating for the individuals themselves to manage themselves,” she says. “Many lose the ability to feed themselves (and) lose their ability to transfer."
Fortunately, Lann says it is possible to get back on track. Even after all these years, Cristina is making progress.
“This is not the same woman that I walked in the door a couple of years ago and saw,” Lann says.
Kids, don't miss TheMobilityProject.com's crossword on cerebral palsy terms. Click here.