Raising a child with cerebral palsy or caring for an adult with cerebral palsy can be rewarding but also challenging. Support groups, educational resources, respite care, and self-care are all vital for helping caregivers fulfill their roles while also maintaining their own wellness.
The Challenges of Being a Caregiver
Parenting is sometimes difficult, but caring for a child with cerebral palsy presents unique challenges. Children with CP may have mild symptoms or debilitating symptoms that require 24-hour care.
If you love and care for a child with disabilities, support and resources can be lifesavers. Rely on family and friends for both practical and emotional support. Turn to your medical team for treatment and care guidance.
To be a successful caregiver, you need more than these resources. You need support that is specific to your role, education and resources about CP, respite care, and attention to your own health and well-being.
Resources and Support Groups for Caregivers
For the issues only other caregivers can understand, turn to support groups and organizations that provide resources for families with disabled children and caregivers:
- The Arc is an advocacy group for people with all types of disabilities. It is a national program with local chapters that parents and caregivers can contact for support and information.
- Caregiver Action Network (CAN) is a group entirely devoted to caregivers and their needs. It provides resources, education, and support.
- The Cerebral Palsy Foundation is a national advocacy group. It funds programs and support for children with cerebral palsy and their parents and caregivers.
- Cerebral Palsy Support Network is a resource for families in Australia. It helps families find therapy and support, educational resources, and care services. Online support groups are available.
- Daily Strength gathers support groups for a variety of topics and needs, including an active group for caregivers of all types.
- Family Caregiver Alliance has an online caregiver support group for all types of caregivers as well as specialized support groups.
- Family Voices supports families and caregivers of children with disabilities and certain medical conditions. It can help connect you to organizations across the country for support and information.
- Mommies of Miracles is a large online support group for mothers of children with disabilities like cerebral palsy and other special health needs.
- Parent to Parent USA supports parents of children with special needs. Families can share their stories, learn from others, and connect with state and local groups.
- United Cerebral Palsy (UCP) is a national organization with state and local chapters. Advocacy is a major goal of UCP, but local groups also host support services for caregivers, parents, and others.
Day Care for Children and Adults with Special Needs
Day care centers that accommodate children with special needs can be difficult to find or expensive. While schools must follow federal laws in accommodating children and providing Individualized Education Plans (IEPs), daycare facilities can turn away students at will. Adult day care centers may be easier to find but should be carefully vetted.
- The Arc. The Arc is a national organization that supports and advocates for people of all ages with disabilities. Some local chapters offer day programs for babies, children, and adults.
- Bright Horizons. Bright Horizons is a private educational service provider that offers day care and preschool programs throughout the U.S. Many of the locations accommodate and provide services for special needs children.
- Childcare Aware. This is a useful resource for parents seeking any type of childcare. It provides resources and guidance for selecting a daycare or other type of program. You can also use the CCR&R search tool to find a Childcare Resource & Referral Agency in your area. It also provides links to licensing, inspection, and other information for your state.
- ChildCare.gov. This federal government website is a good resource for parents seeking childcare or day care. It can answer your questions about federal laws and special education. It also provides links to early learning and child development resources by state.
- Easterseals. Easterseals provides adult day care centers throughout the U.S. to accommodate adults with disabilities. The programs include recreation, skills training, and some types of therapy or supervised medical care.
- Early Intervention. Although it is not a day care resource, your state’s Early Intervention program can provide necessary services. Early Intervention is designed to provide therapy and other services for children under three years old with special needs. Contact your state’s office for an evaluation and more information.
- State Health Departments. Check with your state’s health agency for adult day care information. States license or certify day care programs for adults by state.
- Winnie. Winnie is a childcare marketplace that is searchable by various factors. You can look for day care programs in your area that specifically work with children with special needs.
Home Care
Sometimes, a caregiver needs help in the home so they can provide better care for their child. Home care can be basic services like cleaning and cooking or more skilled nursing care. You may be able to rely on family members to do some of this work, but it is often helpful to enlist professionals. Some of the types of workers who can provide home care include:
- Basic home care workers. Cleaning companies and workers who can run errands or do chores can do much of the mundane work around the house that frees caregivers to spend more time on their more involved work.
- Health aides. Home health aides can provide more advanced or personal care, such as bathing and dressing and moving patients between bed and wheelchair. Many will also do basic home chores, like cleaning. These aides are not qualified to provide any nursing services.
- Nurses or nurse assistants. Licensed medical professionals can provide more advanced care, such as organizing and administering medications or IVs.
Respite Care
Caregiving, especially when it is for your child, is more than a full-time job; it’s a 24-hour job, seven days a week. Caregivers sometimes need more of a break than home care workers can offer. A short period away from caregiving is called respite. It can be anywhere from a few hours to a week or more.
You can get respite care informally, for instance, by having another family member take over full-time duties for a period of time. There are also professional organizations that offer respite care. These often include two options: placing your child in a care facility for a period of time or having a professional come into your home to provide care.
Contact the Arch National Respite Network and Resource Center to find respite care in your state and area. These are some additional resources for finding and funding respite care:
Caregiver Mental Health and Self-Care
Caregivers often put themselves last, but self-care is essential. It is important for your own well-being and to allow you to provide the best care for a child or adult with cerebral palsy. A good first step is to share the load and to rely on friends and family, home care workers, respite caregivers, and support groups.
Asking for and receiving help with caregiving provides you with the time to manage your own health. Use that extra time to take care of yourself in these important ways:
- Get enough sleep if you can and take naps, or just sit down to rest as needed.
- Eat healthy meals instead of relying on quick junk food or fast food.
- Make time to exercise regularly, even if it’s only a walk a day.
- See your doctor regularly to monitor your health.
- Seek mental health care if necessary. Therapy can be very useful when coping with the stresses of caregiving.
- Spend time doing things you enjoy.
Educational Resources for Caregivers
As a caregiver for someone with cerebral palsy, it helps to know more about the condition, about people living with disabilities, and about what it means to provide care. Here are some additional resources:
March of Dimes is an advocacy and educational group for moms, parents, and caregivers. They provide resources regarding a variety of health issues related to moms and babies.
The Weinberg Family Cerebral Palsy Center at Columba University in New York is a research group that also provides patient care and education.
This Recommended Reading list from the Cerebral Palsy Foundation (CPF) has several books that would be useful for a caregiver or parent of a child with CP. Check with your local library to access copies of these and other books for free.
CPF also produces a useful podcast called Let’s Talk CP. The hosts and guests discuss all aspects of living with CP and caring for someone with disabilities.
Disability Scoop regularly publishes articles on all aspects of living with a disability, including a special section o cerebral palsy.
Ability is a magazine that has won awards for changing how people view disabilities. It’s a great resource for anyone living with or caring for someone with a disability.
Exceptional Parent Magazine provides parents and caregivers of disabled children with information, educational resources, support, and advice.
The Cerebral Palsy Alliance Research Foundation provides many kinds of resources and information about CP, including a regular podcast called Changing What’s Possible.
The Special Needs Mom Podcast is hosted by Kara Ryska, who describes it as “your very own special needs mom support group.”
Being a caregiver is difficult, but support is available. If you need financial support as well, check out our financial resources page.
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