While most people have heard of cerebral palsy, they may be unsure of how to define it.
“Cerebral palsy is a spectrum of issues that is caused by brain damage that occurs either at birth or in utero such as lack of oxygen in a difficult childbirth process or something in the internal development while the baby is in the womb,” said Shelly DeButts, director of marketing and communication for United Cerebral Palsy. The extent of the damage depends on what symptoms someone has.
“It can affect people in many different ways depending on what part of the brain is affected and can result in mild or significant physical disabilities, developmental delays, or intellectual disabilities,” said Al Shibley, vice president of communications at United Cerebral Palsy. Some people may have slight fine motor problems while others may not be able to speak clearly or use their limbs.
Some kids with cerebral palsy are easier to recognize than others.
“They may have a slight stiffness in their arms or legs, or might walk with a slight shuffle, or may use a speech app on an iPhone to communicate, so there is a huge range,” said DeButts. Diagnosis can be challenging. “It is mainly a medical professional making a judgment call on a set of symptoms such as certain developmental milestones not being met or physical problems being present like involuntary muscle contractions and then ruling out other causes of that.”
The biggest thing people can do is be respectful.
“Our mission is to help them achieve everything they are capable of and to have the greatest integration in society as possible,” said Shibley. Families affected by cerebral palsy face some of the same challenges as other families. “They may be struggling to make ends meet, find employment, find housing, medical care and support and be accepted into the community.”
Folks need to be reminded that there are legal protections in place to ensure that employers cannot discriminate based on a disability.
“Putting a ramp on a building or making sure a child with a wheelchair can go onto the playground is part of inclusion,” said DeButts.
Parents tend to have the hardest time with the diagnosis.
“When you are a new parent, there are expectations, and when you are told that your child may not be able to walk or will have difficulty speaking, your expectations are rocked a bit, so you need to find people to talk to, get the right facts and information, and be prepared for what is going on,” said DeButts. While there is no prevention, women should continue to take good care of themselves. “Good prenatal care and obstetrical care for mothers can prevent some cases.”
Services vary from case to case.
“It may include physical therapy to improve strength, coordination, and the ability to stand, walk, or sit; there are educational plans that help students in school; and there are occupational therapies to maintain mobility,” said Shibley.
There are public and private programs to help families with cerebral palsy have vital, satisfying lives.
“Much is supported through government programs with Medicaid and private insurance, and we are continuing to advocate for a consistent level of supports and services to help people be active in their community and lead lives that they consider fulfilling,” said Shibley.
While there are some treatments to make things less painful and improve mobility, there is no cure.
“We like to stress early intervention, because while it typically happens at birth, a lot of kids are not diagnosed until months or years later, because they fail to meet a developmental milestone like not walking or rolling over,” said DeButts.
Progress has been made.
“The largest improvement is probably in the general perception and acceptance of people with disabilities, and there has been legislation like the Americans with Disabilities Act and the Homestead Plan that have made a difference,” said Shibley. Communication technologies have made huge leaps and bounds over the years.
“In decades past, people would just assume that someone with cerebral palsy who had speech difficulty was not intelligent, and you may actually have a genius in front of you that cannot speak to tell you,” said DeButts. And mobility is made easier. “The difference between wheelchairs then and now is incredible in terms of ergonomics, portability, and ease of use and a lot of people use scooters,” said DeButts.
The future for people with cerebral palsy is promising.
“There are breakthroughs on the horizon of exoskeletons that are fitted onto a person’s legs and can be controlled with brain impulses where it moves their legs for them,” said DeButts.
Researchers are working hard to make things better.
“There have been a lot of developments in terms of managing pain from involuntary muscle spasms,” said DeButts.
Kids are reaching out and befriending classmates with cerebral palsy and differences are minimized.
“If we start inclusion at the beginning, then children could hopefully grow up in a society where they do not see anything odd or different about someone with a disability, and it is just another person just like someone who has blonde hair,” said DeButts.
Jamie Lober, author of “Pink Power” (www.getpi
© 2015 Jamie Lober
