A child’s cerebral palsy diagnosis affects his or her entire family, leading to uncertainty and challenging caregivers’ understanding of the disorder.
Fortunately, wide-ranging support resources furnish information, guidance and encouragement, providing vital tools for CP management.
Finding Help for Cerebral Palsy
Cerebral palsy presents medical challenges, but comprehensive care also includes support beyond the doctor’s office. In addition to medical assistance, families affected by CP need access to education, emotional support, legal advice and financial resources.
Cerebral palsy support for families comes from advocacy groups, charitable organizations and government agencies tasked with improving CP outcomes. This vital support system helps families come to terms with a life-changing cerebral palsy diagnosis.
Support for Children with CP
Various forms of therapy and rehabilitation improve patients’ quality of life and reduce the incidence of complications tied to the disorder. Treatment plans are highly individualized, addressing conditions present in each case. Therapy for cerebral palsy may include the following:
- Physical Therapy – Physical therapy improves motor function, coordination, strength, mobility and flexibility. This form of treatment is among the most beneficial for large muscle groups affected by cerebral palsy.
- Occupational Therapy – OT addresses physical symptoms, preparing children for challenges at home, school and in other public environments. The protocol also helps with cognitive and social functions, improving learning and reinforcing confidence.
- Speech Therapy – Speech, swallowing, and digestive difficulties commonly occur among children with cerebral palsy. In addition to other rehabilitative goals, speech therapy strives to improve muscle coordination in the neck, face, throat and head.
Special Education Opportunities
The Individuals with Disabilities Education Act of 2004 guarantees access to education for United States children suffering from medical disorders. Those diagnosed with cerebral palsy benefit from these types of special education:
- Public school
- Private school
Specialized Playgroups and Summer Camps for Children with CP
Studies show recreation has therapeutic benefits for children with CP, inspiring playgroups and summer camps sensitive to their needs. Adaptive equipment and wheelchair accessible facilities, for example, enable children to participate in numerous summer camp activities, including:
- Arts and crafts
- Organized sports
These and other recreational activities provide social and sensory stimulation, contributing to increased functioning and better overall health and fitness for children with cerebral palsy.
Support for Parents of Children with Cerebral Palsy
Parents of children affected by cerebral palsy require ongoing support managing the disorder’s extraordinary demands. Fortunately, help is available from wide-ranging organizations dedicated not only to afflicted children, but also parents and caregivers.
Tips for Parents and Caregivers
- Explore Available Resources – A childhood CP diagnosis can be overwhelming for parents faced with unfamiliar symptoms and circumstances. Myriad resources soften the blow, providing information, support, guidance and forums with other parents affected by the disorder.
- Care for Caregivers – Parents are best-able to provide high levels of care when their own physical, emotional and mental needs are met. Caregivers are advised to recognize their limitations, getting adequate sleep, nutrition and relaxation.
- Enhance Understanding – Information empowers parents to be the best possible caregivers. Not only does education answer early questions about the disorder, but it also keeps parents informed about CP treatment advances and other important developments.
- Work Together – Both within the household and away from home, enlisting help from a spouse, counselor or support organization eases the pressure on primary caregivers.
Support Groups and Organizations Assisting Children and Families
Families impacted by cerebral palsy benefit from connections made with support groups dedicated to CP causes. Whether meeting in-person or online, support groups play a vital role, helping families at every stage of their journey with cerebral palsy. Among other benefits, participating in a support organization:
- Keeps parents informed about the disorder
- Reassures caregivers
- Provides encouragement
- Spreads hope and understanding
- Relieves stress
National Support Groups
Within the United States, cerebral palsy support organizations operate nationally and at the state and local levels. In practice, national bodies often maintain regional chapters, providing individualized support in communities across the country.
March of Dimes – March of Dimes strives to improve health and treatment outcomes for newborns and mothers. The organization pledges A Fighting Chance for Every Baby, providing support forums and other family resources. The support community includes a social network linking parents of children diagnosed with cerebral palsy and other brain disorders.
Cure CP – The name of this non-profit organization states its underlying mission. The group, founded by 2 families affected by the disorder, focuses on funding support for research efforts and new therapeutic methods beneficial to individuals with cerebral palsy.
Cerebral Palsy Foundation – CPF uses research, innovation and collaboration to make an impact for families facing CP. In particular, the Foundation strives to identify individual Moments of Impact, when intervention and insight into the disorder have the power to change lives.
Reaching for the Stars – Organized in 2004, this charitable organization is run by parents experienced with cerebral palsy. The advocacy group is committed to driving research, education and other services beneficial to children with CP and their family members.
Local Support Organizations
The Arc – Through hundreds of local chapters, The Arc assists individuals diagnosed with a range of intellectual and developmental disabilities. As a leading advocate for all people facing these challenges, The Arc provides support and services beneficial to families affected by cerebral palsy.
Easter Seals – Easter Seals rallies around children and caregivers, providing support for families affected by CP and other disorders. The organization contributes to high achievement among children with disabilities and provides services and resources for caregivers, particularly parents of newly diagnosed children. The organization’s Child Development Center Network provides inclusive care, operating more than 80 centers across the U.S.
Parent to Parent USA – This organization provides information and emotional support for special needs families. P2PUSA employs a unique, personalized approach, matching individuals in-need with experienced partners, serving as “Support Parents”. Their training and familiarity with childhood disorders help reinforce understanding among parents with unanswered questions.
United Cerebral Palsy (UCP) – UCP makes a difference through its widespread network of community resources. Through education, advocacy and support services, the organization enhances independence, productivity, and quality of life for cerebral palsy patients. Focused at the local level, UPC affiliates influence public policy and education, ensuring equal access for families facing the disorder.
Family Voices – Family Voices has worked since 1992, promoting high level health care for children – particularly individuals with distinct health care needs. The family-led non-profit organization strives to empower families facing childhood disorders like cerebral palsy, using national, state, and local resources to ensure the best possible children’s health outcomes.
Support Organizations Online
Special Needs Moms for Moms – This support network relies on technology to bring together families of children with special needs. Using forums and social networking to connect parents facing similar challenges, the group strives to inform, support, inspire and facilitate sharing between members.
Mommies of Miracles – The world’s largest virtual support network for mothers of children with medical complexities and developmental difficulties, Mommies of Miracles provides an extended network of helpful resources. The group furnishes access to products and services, as well as grief support and encouragement for its members.