10 Myths and Misunderstandings about Cerebral Palsy

My Child’s Future is Limited.

A child born with cerebral palsy or other disabilities has never had a more promising future. With early intervention services available from birth, and public school education in the “least restrictive environment” made mandatory, children with disabilities have the best shot ever for a quality education and greater achievement in life. But all services are not provided equally throughout the country. Parents will be the chief advocates for their child.

Caring for my Child with Disabilities Will Place Enormous Stress on my Family.

Caring for a child with disabilities does place substantial stress on a family, challenging family members in every aspect of their lives. However, more and more resources exist to help reduce this stress. Most states now offer family support programs with a range of services, including respite, counseling, parent training, cash subsidy programs, and recreational and after-school activities. Government funded respite services are available in most communities, ranging from in-home assistance to overnight care. Also, local non-profit organizations such as United Cerebral Palsy affiliates provide parent and sibling support groups, resources centers and learning libraries, information, referral aid and assistive technology services. These are often in addition to concrete services which include programs for early intervention, preschool and school-age special education, adult recreation, and residential care, as well as healthcare, employment assistance, and more.

My Child Will Never be Able to Walk.

When a child is very young, it is generally too soon to make a judgment about his or her long-term physical abilities. There are many complex issues that will come into play from a healthcare and rehabilitation perspective. A child’s self-motivation for physical independence also plays a key role. A parent can get connected by networking with other parents, as well as by asking their pediatrician to recommend an agency, hospital, or clinic that can provide the orthopedic evaluations comprehensive medical care and physical therapy.

My Child Will Never be Able to Communicate.

All children communicate in one from or another. Many children benefit from ongoing speech therapy. For a child who has limited speech or difficult-to-understand speech, there are an increasingly wide array or augmentative/alternative speech systems available. Young children learn with simple communication boards, basic “yes/no” switches and sign language. As children grow older and gain the ability to operate more complex communication systems, they typically graduate to more sophisticated and high-tech electronic devices. From the parent’s perspective, it is important to find an educational program or in-house service that is savvy about speech therapy and augmentative communication systems and introduces these services at the earliest point possible. Your local school district or county health department can direct you to speech and augmentative communication services in your community.

My Child Will Never Have Friends who are Non-Disabled.

Throughout their lives, children with disabilities have constant, natural opportunities to interact with youngsters who are non-disabled, such as play groups and family gatherings. Many preschool settings are now integrated and children who have disabilities learn side-by-side with their typically developing peers. When they graduate from preschool, they may go on to inclusionary public school settings.

My Child Will Never Hold Down a Job.

Your child’s future in terms of both supported and mainstream employment is brighter than ever. With the 1997 renewal of the Individuals with Disabilities Education Act (IDEA), we will continue the progress made in the educational arena guaranteeing an appropriate and inclusionary education for individuals with disabilities. Too, the widespread availability of transitional services between school and the work world increase the likelihood of success for individuals with disabilities in the workplace. The statistics speak for themselves: 20 years after IDEA, 57 percent of young people with disabilities as compared with 33 percent of older individuals with disabilities are cumulatively employed within five years of leaving school.

My Child Will Never be Able to get Around the Community.

The 1990 Americans with Disabilities Act (ADA) guarantees the accessibility of public systems by people with disabilities, and mandates alternative transportation systems when public transportation, such as subways, cannot be made readily accessible. And for adults who choose to live in small group programs in the community, specially trained staff provide instruction to promote independent traveling. Many programs also have accessible vans and other vehicles to assist in using community resources.

My Child Won’t Have a Normal Life in the Community.

Children with cerebral palsy and other disabilities have the potential for a childhood, adolescent, and adult life that is satisfying, challenging and, from almost every perspective, similar to everyone else’s. Depending on their degree of disability, they may eventually live on their own or in a small supervised group settings. They may marry and have children of their own. They will face the emotional highs and lows and challenging life circumstances that every person faces at various points in their lives. Most important, they will have a choice in selecting the lifestyle and living situation that they prefer.

Society Will Never Accept my Child.

A child born with disabilities today enters a world where attitudes are light years ahead of society 20 years ago. In most communities across America, we have experienced 20 to 25 years of deinstitutionalization and community living. Individuals who have disabilities are visible everywhere-in school, in the workplace, and in every possible public venue. Most Americans have had some personal experiences with one or more persons who have disabilities – many through volunteer work and many others in every aspect of day-to-day life. Further, the ADA – which mandates physical accessibility for public buildings, public spaces, and transportation – has also served to heighten awareness of those with physical disabilities. While we do not live in a perfect world, we do live in a society which is far more accepting and in tune to the needs of those with physical and cognitive challenges.

My Child Will Never be Independent.

Today there exists an incredible variety of assistive devices and services that enhance the independence of individuals with cerebral palsy. There are also simple modifications that can be made to a person’s home, school and work environments to facilitate independence and productivity. Lowering the clothes bar and shelves in a closet, widening doorways and installing hand-held showers, all make it possible for a child who has cerebral palsy to actively participate in self-care activities. Adapted utensils and appliances enable a child to have access and independence in feeding and food preparations. Other assistive technology devices, ranging from alternative communication systems to computer adaptations, to adapted toys, enhance independence in all areas of a child’s life. Through the federal “Tech Act” Technology Related Assistance for Individuals with Disabilities (TRAID) Centers have been established in every state, offering free information and referral for assistive technology devices and systems.

Find Support

Have questions about cerebral palsy?

Visit the My Child Without Limits support community and talk to fellow parents and caregivers about their experiences with CP.

 

Resources:

American Academy for Cerebral Palsy and Developmental Medicine
www.aacpdm.org

United Cerebral Palsy
www.ucp.org

National Information Center for Children and Youth with Disabilities
www.nichcy.org