Whether you have cerebral palsy or someone with cerebral palsy is in your family, accepting the diagnosis can be challenging. A diagnosis is typically associated with diminished quality of life and a greater burden on caregivers.
However, with time and the application of tools, acceptance and understanding of cerebral palsy is possible for patients and their loved ones.
Challenges When Stepping into Adulthood
Fears about what the future might hold is a significant barrier to acceptance many parents of children with cerebral palsy face. Children with cerebral palsy grow to become adults who do many of the same things other adults do, including finding employment, forming intimate relationships, living independently and having children.
People with cerebral palsy are protected from discrimination by the Americans with Disabilities Act (ADA), ensuring they can access restaurants, stores, movie theaters and other facilities, and enjoy the same workplace opportunities other adults do. The ADA also ensures an adult with speech, hearing, visual, or cognitive disabilities — many of the problems people with cerebral palsy have — can access telecommunications systems and public transport.
However, that doesn’t mean the life of an adult with cerebral palsy doesn’t have challenges. Educating yourself about these can help you prepare for and accept what might come. While the brain damage which triggers cerebral palsy does not progress, effects from the damage to the brain often do. Adults with cerebral palsy are more susceptible to the following physical health conditions:
- Premature aging due to the stress the condition places on the body.
- Post-impairment syndrome, characterized by fatigue, weakness, and pain.
- Degenerative and osteoarthritis.
- Pain to certain areas of the body.
- Functional issues at work due to above health concerns. Some employers may accommodate this with an adjusted work schedule, assistive equipment or more frequent rest breaks.
- Other medical conditions, including swallowing difficulties, high blood pressure, bone fractures, scoliosis and incontinence and bladder dysfunction.
These physical impairments can lead to mental health challenges, including increased stress, anxiety and depression. Untreated symptoms of cerebral palsy typically become worse with age. Understanding the health challenges a person with cerebral palsy might face can inspire preventative action to reduce the risk of symptoms worsening.
Often, these symptoms can also trigger other health complaints. If a child’s muscles don’t grow properly, they may not be able to support the grown adult they become. If these muscles weaken, the adult may face pain and fatigue and lose mobility. As movement becomes more difficult, the adult may stop exercising, which could lead to obesity. Being realistic about potential challenges can help people with cerebral palsy accept their condition and the action they need to take to live their lives to the fullest.
Progressive impairments are not inevitable. This should help motivate people with cerebral palsy to do all they can to prevent future health problems.
The Earlier the Acceptance, the Better
Early acceptance of cerebral palsy is best, especially if you’re the parent or sibling of someone with cerebral palsy. Acceptance is central to ensuring you treat a loved one with cerebral palsy properly, the earlier you reach acceptance, the better it is for your loved one.
Children with cerebral palsy also need more care, especially during their first few years of life, than children without the condition. Becoming involved in the care of a child with cerebral palsy early will make their later care easier. Older siblings can be involved with care of a child with cerebral palsy alongside their parents to ease pressure within the family.
Early acceptance of cerebral palsy also paves the way for early intervention strategies. The earlier a child with cerebral palsy receives therapeutic treatments, the more helpful these treatments are at aiding normal development and improving skills.
Bringing Out the Positives and Focusing on Them
As the old saying goes, every cloud has a silver lining. Focusing on the positive elements of your situation is a great tool for developing acceptance.
The range of assistive technologies helping children and adults with cerebral palsy more effectively interact with the world is a real positive. Children with cerebral palsy can begin using computers to develop alongside their peers from around the age of 18 months.
For example, children struggling to dress themselves can practice the skill using an animated figure on a computer screen. In addition, special computers can help children with cerebral palsy speak while child-sized jeeps can help them become mobile independently.
Francesca Martinez, a British comedian with athetoid cerebral palsy writing for The Independent, wrote that focusing on the positives of her own situation helped her accept her condition.
I’d wasted years worrying about the way I walked or talked, while millions of other humans lived in war, poverty, without clean water or food or shelter. -Francesca Martinez
She also knew people who grew up without love and the support of others. She reasoned these people were disabled in their own way that was far more debilitating than her cerebral palsy. By focusing on the positive things in her life that others lacked, she developed self-love and acceptance of her condition.
Focusing on the positives can help people with cerebral palsy reduce their risks of developing mental health disorders. It claims whether a person with cerebral palsy develops depression is linked to how well they cope with the condition’s symptoms, rather than their severity. Positive thinking both by the person with cerebral palsy and loved ones can improve one’s capacity to cope with challenges.
Falsification of Myths Internally
Myths about cerebral palsy are quite common, believing many of them can hinder acceptance. It’s important for cerebral palsy patients and their families to educate themselves about the condition and separate facts from the fiction.
We once thought since cerebral palsy impacted the brain, its symptoms could not be reversed. However, more recent research has informed the medical community of ways to manage and even reverse some of cerebral palsy’s effects.
The perception that society will never accept a child with cerebral palsy is another persistent myth. In truth, a child born with any disability enters a society that’s much more accepting than it was even 20 years ago.
People with disabilities are now visible in all aspects of community life, ensuring most Americans have personal experience with at least one person with some kind of disability. In addition, the Americans with Disabilities Act, which made public buildings and spaces more accessible to people with physical disability, has further increased awareness. While society admittedly isn’t perfect, most people accept others with a range of disabilities, including cerebral palsy and their needs.
As you research cerebral palsy, you’re likely to find acceptance easier, because the more familiar something is the less scary it seems. Information is accessible, so you’re likely to easily find what you’re looking for. Just remember anyone can create online content, including people who do not fully understand cerebral palsy. Cast a critical eye over each website you visit to determine its credibility.
Here are some helpful starting points in learning about the following aspects of cerebral palsy:
- What causes the condition
- How to manage the condition
- How cerebral palsy can be prevented
- Strategies for improving the life of someone with cerebral palsy
- The challenges someone with cerebral palsy may face
Support groups can also be a valuable source of education and companionship on your journey towards acceptance. There are many support groups around the world, so it shouldn’t be too difficult to find one in your local area.
A support group can help you meet other people in a similar situation who you can share your stories with. Seeing other people with cerebral palsy or loved ones with cerebral palsy who are well cared for and loved will encourage you as you move towards acceptance.
While accepting cerebral palsy can be difficult, working through your emotions about the condition should help you on this challenging journey.