Coping With Cerebral Palsy

Adapting to life with cerebral palsy and learning how to effectively cope with the condition is the leading factor that determines the quality of life of a person with cerebral palsy, as well as the rest of the family.

The abilities of people who are living with cerebral palsy vary tremendously. If you have cerebral palsy, you might be wheelchair-bound and unable to eat without assistance, you may be an athlete who uses a brace intermittently, or you may have abilities that lie anywhere in between these two extremes.

Coping with your condition requires a variety of strategies that have been shown to be effective in living with cerebral palsy.

When cerebral palsy causes profound disability, the dedication of the family and the support of professional caregivers is necessary. If your cerebral palsy is mild, it is generally your own coping skills, rather than the coping skills of caregivers, that determines your overall ability to adjust to and maximize your abilities and satisfaction with life as a whole.

Emotional 

The emotional impact of a cerebral palsy diagnosis occurs very early. Parents are generally more profoundly impacted by the diagnosis than the child, due to the young age of symptom onset. 

Acceptance  

Depending on the extent of the disability, there are almost always inherent limitations in what a person with cerebral palsy can achieve. Acceptance of this fact is necessary in most circumstances.

Positive Attitude 

A positive attitude is completely compatible with acceptance. Studies show that most people who are living with cerebral palsy and their families have an overall positive outlook and do not dwell on negative thinking. 

Setting Goals 

In some situations, a person with cerebral palsy is able to overcome obstacles and achieve physical, cognitive, or other skills.

For all people with cerebral palsy, tangible and realistic goals can provide motivation and can also deliver the satisfaction of a job well done. 

Spiritual Participation

A person with cerebral palsy has the ability to express an opinion about participation in spiritual activity and exposure to faith-based activities and can benefit when these wishes are facilitated.

Cognitive 

Some people with cerebral palsy have a learning disability, and if you or your child has a learning disability, you still have the potential to learn at your own pace.

Education 

Education is an empowering tool for anyone, including people who are living with cerebral palsy. Education makes it possible to enjoy the benefits of better employment opportunities, to learn about how to manage money and to read for general knowledge and enjoyment. It is if important to seek out educational resources that are compatible with your abilities.

Physical 

If you or your child has cerebral palsy, safely getting around the home environment and outside destinations can be a challenge. You might need a wheelchair, a walker, or a brace to be able to get from place to place. In addition to the professionally recommended devices for assistance with ambulation, family strategies are the key components of ensuring safety while maximizing freedom to get around the house and the outside world.

Your family and caregivers may need to tailor the right routine for you.

Sports

Athletic activities for people living with cerebral palsy are offered in most communities. These activities can provide a variety of ways to learn sports for personal achievement and you might be able to join competitions as well. 

Mobility Devices 

Wheelchairs and walkers can usually be personalized to provide the right amount of support without unnecessary confining you or underutilizing your physical capabilities. 

Home Environment 

Your home can be adapted with ramps, rails, padding and other structural components to facilitate getting around the house as independently as possible.

Transportation 

Cars can be adapted to be handicapped accessible, which makes it possible to enjoy life outside the house. 

Handicapped Accessible and Handicapped-Friendly Public Places 

Familiarizing yourself with nearby public spaces that are handicapped accessible such as restaurants, museums and parks can allow you to participate in your community and take advantage of your neighborhood surroundings.

Social 

Social interactions and communities can be beneficial in many ways for people who have cerebral palsy and for their families. 

School  

Attending school provides daily structure, education, socializing with peers and a sense of confidence and belonging for those living with cerebral palsy. Schools are constantly improving their services for students with special needs and learning to personalize instruction while giving students a chance to remain part of the group. Often, parents need to communicate specific needs in advance so the school can design a beneficial plan for the student.

Summer Camps

Camps designed to accommodate children and adults with disabilities can provide a safe and fun opportunity to socialize, enjoy outdoor activities such as swimming and build skills in sports and recreation. 

Family Gatherings

Extended family gatherings may provide the best opportunity for people living with cerebral palsy to bond with a loving network. Extended family can also help with sharing the burden of care to occasionally relieve the primary caregivers (usually parents and siblings of a person who has cerebral palsy). 

Community Events 

Neighborhood or faith-based communities can be a comforting place for a that a person living with cerebral palsy. Feeling accepted as part of an extended community can give a person living with cerebral palsy a change of scenery that is also familiar. 

Employment 

Teenagers and adults living with cerebral palsy may be able to work in an employed position. County and state resources can provide direction in finding employers that accommodate and support employees who have limitations. Working in this capacity provides confidence, camaraderie and builds skills and independence.

Practical

A number of special strategies may help optimize your life and the life of your family.

Technology

Computer-assisted communication and control of mobility devices can provide an additional level of independence if you have cerebral palsy. Online activities can provide the opportunity for safe interaction with others in the forms of messaging, games, and tutoring. 

Vacations 

Exposure to a different environment and taking time off from the regular routine helps all people, including individuals living with cerebral palsy and their caregivers. Many destinations are handicapped accessible, and support groups can often offer guidance and recommendations for places that accommodate your abilities. 

Asking For Help 

If you have mild cerebral palsy, it is valuable to ask for help from friends and family or from professionals when you need it. And if you are a caregiver of a person who is living with profound circumstances of cerebral palsy, asking for assistance can also ease the burden and stress that you undoubtedly are enduring, giving you more time for yourself so that you can provide the loving care that you want to provide. 

Residential Living

Many caregivers of people who have cerebral palsy experience profound stress, which can lead to personal health problems and resentment. It is not uncommon for families to seek a residential facility for a person who has cerebral palsy. Professionals who are familiar with the condition can provide round the clock care, while family members can visit often. 

Trust

Trusting others can be a huge issue when it comes to cerebral palsy. When a physical or cognitive ability is impaired it can be hard to know who to trust.

There are strategies that can ease your peace of mind while helping you avoid those who might want to take advantage of people who have physical or cognitive deficits. These strategies can include using cameras to monitor caregivers, creating systems in which financial activity is double checked by multiple people, and working to nurture a network of genuine, trusted friends who agree to look out for your loved one who is living with physical or cognitive disability caused by cerebral palsy.

Sources:

Benner JL, Hilberink SR, Veenis T, van der Slot WMA, Roebroeck ME, Course of employment in adults with cerebral palsy over a 14-year period Dev Med Child Neurol. 2017 Jul;59(7):762-768. doi: 10.1111/dmcn.13423. Epub 2017 Mar 17,

Mudge S, Rosie J, Stott S, Taylor D, Signal N, McPherson K, Ageing with cerebral palsy; what are the health experiences of adults with cerebral palsy? A qualitative study,BMJ Open. 2016 Oct 13;6(10):e012551. doi: 10.1136/bmjopen-2016-012551.

Ribeiro MF, Vandenberghe L, Prudente CO, Vila VD, Porto CC, Cerebral Palsy: how the child's age and severity of impairment affect the mother's stress and coping strategies,Cien Saude Colet. 2016 Oct;21(10):3203-3212. doi: 10.1590/1413-812320152110.17352016.