Raising a child with cerebral palsy
Since every child with cerebral palsy has a different experience, there is no one-size-fits-all approach to raising and caring for your child. Parents and caregivers can expect to take on many responsibilities throughout their child’s life.
Many parents feel lost or confused when their child is first diagnosed. If you feel that way, you should know that there are plenty of resources to help you cope with the challenges of raising a child with special needs and ensure that your child lives a healthy and rewarding life.
Raising a child with a disability takes time, effort, empathy, and patience. You got this!
Cerebral palsy support groups for parents and caregivers
When caring for a child with cerebral palsy, reaching out to other parents and caregivers who are going through a similar experience may be beneficial.
There are many national and local support groups for cerebral palsy and caregiving. Cerebral palsy parents often find community in these groups and form connections they can lean on during challenging times.
- Caregiver Action Network (CAN): CAN focuses on improving the quality of life for Americans who care for loved ones, including children with cerebral palsy. You can reach out for help and support using their caregiver help desk.
- Cerebral Palsy Foundation: This organization contributes millions of dollars each year to cerebral palsy research and advocates to create positive change for people with CP.
- Easterseals: This group provides support and services to more than 1.5 million people with disabilities through its national network of affiliates. These services are wide-reaching and include education, employment, transition, family support, and caregiving assistance. You can connect locally with an Easterseals affiliate near you.
- Family Voices: This community support organization promotes quality health care for children and youth with disabilities by working closely with government leaders and medical professionals to ensure families’ voices are heard.
- Federation for Children with Special Needs: The Federation provides information and support to all caregivers of children with disabilities, including parents, grandparents, and guardians.
- Parent to Parent USA: This group matches parents with a trained support parent for one-on-one support. There are currently 38 Parent to Parent Alliance Member organizations across the nation.
- The Arc: This organization promotes the rights of people with intellectual and developmental disabilities and their access to essential support programs. There are more than 600 state and local chapters.
- United Cerebral Palsy (UCP): UCP’s mission is to educate, advocate, and provide support resources for individuals with cerebral palsy and other disabilities and their families. You can look for a UCP affiliate near you.
You can also find online cerebral palsy support groups through Facebook and other social media sites.
Cerebral palsy information for caregivers
Caring for a child with cerebral palsy can be overwhelming, but there is an abundance of information that can help you along the way.
You may be able to relieve some of the stress and worry surrounding your child’s cerebral palsy by learning more about this health condition and how other families have overcome similar challenges. Additionally, learning about people with cerebral palsy who are not only surviving but thriving can make you feel more positive about your child’s future.
Here are some resources for parents with a child with cerebral palsy.
Books
Books can provide a cerebral palsy caregiver with information to help them learn how to support a child with cerebral palsy, advocate for top treatments, and teach others about CP. They are also a great resource to help ensure your child lives life to the fullest.
Some books about cerebral palsy for parents and caregivers include:
- Cerebral Palsy: A Complete Guide for Caregiving (3rd edition, 2017) by Freeman Miller, M.D., and Steven J. Bachrach: Doctors from the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children provide information for parents and grandparents caring for a child with CP.
- Spastic Diplegia Bilateral Cerebral Palsy (2020) by Lily Collison: This book explains how spastic diplegia develops over a child’s life and explores top treatments. It was written by the parent of a child with CP along with experts from Gillette Children’s Specialty Healthcare. The book aims to empower parents to advocate for children with CP.
- The Impossible Mile: The Power in Living Life One Step at a Time (2021) by Johnny Agar: Johnny Agar was born with cerebral palsy. Doctors said he would never walk. In this memoir, Johnny tells how he overcame the odds to become an Ironman triathlete by drawing strength from his family and faith.
- Xander’s Cerebral Palsy Superpowers (2020) by Lori Leigh Yarborough: Xander is not just a young boy with CP — he’s an important part of his family with his own talents. This illustrated book can help a cerebral palsy caregiver explain CP to siblings or friends.
The Cerebral Palsy Foundation also has a recommended reading list on its website.
There are many other books about cerebral palsy that may be helpful to you and your family members. You can search for books online or at your local public library or ask your child’s doctors or other caregivers for recommendations.
Tip: You may be able to request that your library buy a book and place it in their collection. Most libraries have a form on their website that allows people to request or suggest a purchase. This can save you money if you have a lengthy CP reading list.
Magazines
Magazines can sometimes be more helpful than books because they usually contain more current information. This can be important when reading about a medical condition like cerebral palsy since treatments, therapies, and assistive technologies can change over the years.
Some magazines and newsletters that may be helpful to a cerebral palsy caregiver include:
- ABILITY Magazine: This award-winning publication aims to change how the public views people with disabilities and shatter stereotypes associated with disabilities. ABILITY’s job board, abilityJOBS, is the largest job site for people with disabilities, with nearly 6,000 registered employers.
- Complex Child E-Magazine: Parents of children with special needs write this free online magazine.
- Disability Scoop: This publication provides the latest news affecting people with developmental disabilities and has a dedicated section on CP. You can sign up for the Disability Scoop newsletter for free on the website.
- Exceptional Parent Magazine: EP Magazine provides advice, emotional support, and educational information to families raising children with special needs. Recent issues featured articles on dental treatment for autistic patients and vision and hearing changes in people with intellectual disabilities.
- New Mobility: This magazine features stories showing how wheelchair users can live rich and fulfilling lives. Article topics include health, lifestyle, and technology. You can sign up for a free one-year subscription by registering with the United Spinal Association.
Podcasts
Many people prefer to get their information and entertainment from podcasts. You can listen and learn on your commute home or while cooking dinner.
- Accessibility Minute With Laura Medcalf: This weekly podcast, which clocks in at under 2 minutes an episode, highlights assistive technology that helps people with hearing, mobility, and vision challenges.
- Changing What’s Possible: Each episode of this podcast from the Cerebral Palsy Alliance Research Foundation introduces listeners to innovative technology that’s making a difference in the lives of people with disabilities.
- Parenting Impossible – The Special Needs Survival Podcast: Parents and experts discuss issues dealing with raising children with different abilities. Topics include parenting techniques, learning disabilities, and advocating for social justice issues.
- Parenting Special Needs Podcast: This podcast from Parenting Special Needs Magazine looks at the challenges and joys of parenting children with special needs. Past episodes focused on nonverbal communication, adaptive clothing, and vacationing with a child with significant health needs.
- The Cerebral Palsy and Fitness Podcast: Host David Figueroa talks about living with CP and how he became interested in fitness. David is a former three-sport athlete, teacher, and motivational speaker.
- The Special Needs Mom Podcast: Host Kara Ryska calls her podcast “your very own special needs mom support group.” The podcast is for moms who find themselves overwhelmed with caring for a child with special needs and looking to manage burnout, stress, and grief.
More cerebral palsy help for parents
Learning more about your child’s cerebral palsy and connecting with a cerebral palsy parent support group can help you provide daily care for your child. However, there is more to consider, such as paying for your child’s treatment and finding quality education that fits their needs.
The good news is that there are resources available to help. For example, your family may qualify for federal government assistance that can offer you additional income and health insurance.
You can learn about potential sources of financial support in our cerebral palsy financial assistance resource.
Our special education resource has more information about education options for children with cerebral palsy.
Getting help with cerebral palsy caregiver duties
Caring for someone with cerebral palsy provides countless rewards, but the psychological impact of cerebral palsy on families can be enormous. Parents raising children with disabilities are more likely to experience depression and anxiety, especially when they spend many hours a day providing care.
Nearly 40% of family caregivers feel that their situation is extremely stressful, according to the Anxiety & Depression Association of America.
Fortunately, cerebral palsy caregivers have several options for taking a break and getting some much-needed and deserved downtime.
Family support
As the saying goes, it takes a village to raise a child. This is especially true for children with CP and other special needs.
A cerebral palsy caregiver can reduce their stress by accepting offers of help from family and friends and suggesting specific tasks they can do to help.
“Make a list of things they can do — from carpooling to running errands — and let them choose. An online sign-up tool can keep things organized.”
Respite Care
Respite care is a service in which professional caregivers provide temporary care. It is usually provided in the family home.
Additionally, respitality programs — a combination of respite and hospitality services — offer cerebral palsy caregivers a break from caregiving duties. Some hotels and restaurants offer free accommodations and meals during a 24-hour getaway. This time away can help parents recharge and return to their cerebral palsy caregiver duties refreshed.
Another option is a parent “co-op,” where families watch each other’s children. You may be able to find families willing to participate in a co-op in cerebral palsy support groups.
You can contact your United Cerebral Palsy affiliate about respite care in your area. The ARCH National Respite Network and Resource Center has a national respite locator service that can help you find respite care near you.
Additionally, Caregiver Action Network has a list of respite resources on its website, and Nemours KidsHealth has information on finding and paying for respite care.
Home care
Sometimes cerebral palsy caregivers need outside help — temporarily or permanently — to keep providing quality care at home. Home care is a broad term that refers to several types of services.
Home care providers include:
- Companions, who help with tasks around the house but generally do not perform personal care services
- Home care aides, who help with personal care such as bathing, dressing, house cleaning, and toileting
- Registered nurses, who provide medical care, give medications, and teach family members how to administer medical care
- Therapists, who help people with cerebral palsy improve their cognitive, motor, and speech skills
Inviting someone into your home to care for your child is a big decision. You can ask your child’s medical providers or a hospital social worker to help you find qualified caretakers.
Self-care for cerebral palsy caregivers
It’s common for parents to be so focused on raising their child that they forget to care for themselves. The physical, emotional, and financial strain that comes with cerebral palsy can be overwhelming, especially for women.
“Women especially are at risk for the harmful health effects of caregiver stress. These health problems may include depression or anxiety.”
Here are some tips on how a cerebral palsy caregiver can manage caregiver stress:
- Ask for help. Never be afraid to speak up if you are feeling overwhelmed and have too much on your plate. If you don’t have enough time to rest, it’s probably time to ask for help.
- Eat healthy. It’s incredibly important to take care of your body so you have the fuel it needs throughout the day. Be sure to incorporate nutrient-dense foods, including fruits, vegetables, and protein, to keep your energy up to take on your busy schedule.
- Get plenty of rest. Many parents don’t get enough sleep, which can seriously affect their personal relationships and emotional and physical well-being. Getting the recommended eight hours of sleep can help you feel rested and reduce stress.
- Let out frustration. Bottling up feelings of anger, depression, or anxiety can lead to exhaustion. Caregivers should have someone to talk to, whether a friend, a family member, or a professional. Talking it out and expressing your feelings helps you feel more at ease and less anxious about caring for your child.
- Manage your health. See your health provider for regular checkups and tell them you are a cerebral palsy caregiver. Don’t forget to mention any symptoms of depression or anxiety that you may be experiencing.
- Take time to relax. Carve out some time to focus on yourself and unwind. A frustrated caregiver isn’t as good at coordinating daily tasks and meeting their child’s needs. Parents are more effective caregivers when they give themselves some well-earned time off, even if it’s only for a couple of hours on the weekend.
Managing caregiver stress can be challenging when you have the 24/7 responsibility of caring for a child with cerebral palsy. However, you can’t support your child to the best of your abilities unless you’re strong and healthy.
When you feel overwhelmed, remember that support groups and other cerebral palsy caregiver resources are available to help you navigate your caregiving responsibilities, reduce your stress, and recharge.
Our free downloadable Cerebral Palsy Guide has more cerebral palsy resources for parents.
