Cerebral palsy help for parents and caregivers

Raising a child with cerebral palsy

Since every child with cerebral palsy has a different experience, there is no one-size-fits-all piece of advice on how to raise and care for children with cerebral palsy.

Parents and caregivers can expect to take on numerous responsibilities that are unique to those with cerebral palsy, from childhood to adulthood. Many parents feel a bit lost or confused when their child is first diagnosed, but you are not alone. There are plenty of resources to take advantage of to give your child a healthy and fulfilling life.

To learn more about the support options that Cerebral Palsy Guide can offer you and your family, try downloading our free Cerebral Palsy Guide. This guide includes over 12 pages of in-depth information for children and parents of a child with CP.

Cerebral palsy information for parents

Caring for a child with cerebral palsy can be overwhelming, but there are many resources that can help you along the way.

Top resources for parents and caregivers:

• Support groups
• Books
• Forums
• Assistive devices

Support groups

When caring for a child with cerebral palsy, it may be beneficial to reach out to others who are going through a similar experience. There are plenty of national and local support groups for primary caregivers, creating a community for those to form connections and lean on one another during challenging times.

National support groups include:

• March of Dimes: This group aims to improve the health and wellness of new mothers and babies with disabilities by providing a support community with online discussion boards and forums.
• Cure CP: Founded by two families affected by cerebral palsy, this group helps to fund and support research for the condition.
• Cerebral Palsy Foundation: This organization contributes millions of dollars each year to cerebral palsy research and advocates to increase the level of support for people with the condition
• Reaching For The Stars: This advocacy group founded the “CP Kids Coalition.” This group serves as a platform for young people to write articles and engage in discussions about issues surrounding adulthood. This can help prepare parents for their child’s transition into being an independent adult living with cerebral palsy.

Local support group affiliates include:

• United Cerebral Palsy (UCP): This group’s mission is to educate, advocate, and provide support resources for individuals with cerebral palsy and other disabilities. UCP strives for the social, legal, and technological changes that make it easier for individuals with disabilities to achieve their goals.
• The Arc: This organization focuses on providing support for families and children with cerebral palsy across the nation by offering more than 730 state and local chapters.
• Easter Seals: A non-profit organization, Easter Seals supports more than 1 million children and adults with disabilities by providing services for medical rehabilitation, residential services, job training, child care, adult day programs, and camping/recreation.
• Parent to Parent USA: This group’s mission is to ensure that families and children with special needs have access to support. They do this through their extensive community network by matching trained “Support Parents” with families in need.
• Family Voices: Family Voices is a community support organization that 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.

Books

Books about cerebral palsy can provide you with information to better understand your child’s diagnosis. They are a great resource to help ensure your child lives life to the fullest extent.

Some books about cerebral palsy for parents and caregivers include:

• Out of My Mind (2010) by Sharon M. Draper: This novel tells the story of 11-year-old Melody, who has cerebral palsy and a powerful photographic memory. This book was written for parents and caregivers of disabled children and individuals who may struggle to interact with others with disabilities.
• Cerebral Palsy: A Complete Guide for Caregiving (2006) by Freeman Miller and Steven Bachrach: Written by a team of cerebral palsy experts, this book provides families with answers to nearly every question about the condition. Miller provides a multitude of information on many topics including nutrition, mobility, and assistive devices.
• Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs (2012) by Anat Baniel: This book is written for parents of children with an array of developmental disorders and highlights the author’s research on harnessing the brain’s capacity. Baniel emphasizes “connecting” rather than “fixing” to maximize potential in children with cerebral palsy.

Forums

Online platforms act as a point of contact for families to share information, ideas, advice, and words of encouragement. These forums are easily accessible on the internet.

Although no two children with cerebral palsy have the exact same experience, forums can help you connect with families in similar circumstances to yours.

Online cerebral palsy forums include:

• Special Needs Moms for Moms: This online community provides a vast social network for parents and families of children with special needs. Parents in this group can offer support, organize local meetups, and provide inspiration for other families.
• Mommies of Miracles: The largest online support organization for children with disabilities, Mommies of Miracles provides a network of resources, products, and services to educate and inspire mothers.

Assistive devices

Assistive devices include aids for communication, hearing, vision, writing/typing, and daily tasks.

These devices can help your child gain more confidence in their daily life and live more independently to prepare them for adulthood. Assistive devices can also help to put your mind at ease by knowing your child can communicate their needs in an effective way.

Caregiver tips for cerebral palsy

Sometimes caregivers have difficulties identifying daily practices to improve the lives of their children. These tips can be incorporated into your daily routine to ensure your child is receiving the highest caliber of care.

Educate yourself

Educate and familiarize yourself with information on cerebral palsy to foster a healthy life for your child.

Stay informed

Keep up to date on new treatments and ways to improve your child’s life while living with cerebral palsy.

Researchers are constantly studying new therapies and different treatment methods. Keeping in contact with your doctor and learning about updated information may help your child have access to new treatments that can improve their quality of life.

Get organized

Keep a list of doctors’ phone numbers, medications, medical records, appointments, emergency contacts, school contact information, and imaging and lab results. Being prepared and having these things on hand can help reduce the stress of searching for important information during an urgent situation or before regular doctor visits.

Stay healthy

It can be challenging to feed a child with cerebral palsy, as they may have poor motor skills and gastrointestinal issues. Incorporating a healthy diet into your child’s routine may help improve their overall health.

Children with cerebral palsy require nutrients to keep their bones strong. Serve your child calcium-dense foods such as milk, yogurt, and cheese to strengthen their bone density. Incorporating Vitamin D rich foods such as fish, orange juice, and cereal can help your child’s body better absorb calcium.

Drinking plenty of water is very beneficial to children with cerebral palsy. Drinking water can improve your child’s muscle elasticity and joint hydration.

For children who are unable to eat by mouth, consult your nutritionist often to ensure your child is getting enough nutrients through their gastronomy tube.

Get active

Help your child stay as active as possible. Although your child may not be able to move as easily as other children, help them move as much as possible and focus on gaining strength in different muscle groups.

Cerebral palsy caregiver resources

It is very common for parents to be so focused on raising their child that they forget to take care of themselves. The emotional and financial strains that come with cerebral palsy can be a lot to handle, so it’s important for parents to address and prevent these burdens when they can.

Here are some tips for new parents who are raising a child with cerebral palsy:

Eat healthy

It’s incredibly important to take care of your body so you have the fuel that your body needs throughout the day. Be sure to incorporate nutrient-dense foods including lots of 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, and this can seriously affect their personal relationships, as well as emotional and physical well-being. Getting the recommended eight hours of sleep can help you feel rested and reduce stress.

Take time to relax

Carve out some time to focus on yourself and unwind to get back into the right state of mind. Parents are more effective caregivers when they give themselves some well-earned time off, even if it’s for a couple of hours on the weekend. A frustrated caregiver isn’t as adept at coordinating daily tasks and keeping up with their child’s needs.

Ask for help

Sometimes it can feel impossible to get a good night’s sleep — let alone to take some time off. It’s essential that parents ask for help when they are feeling overwhelmed and have too much on their plate. If you don’t have enough time to rest, it is probably time to ask for a little help.

Let out frustration

Bottling up any feelings of anger, depression, or anxiety can lead to parents keeping themselves in a state of exhaustion. Caregivers should have someone to talk to, whether it’s 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.

Child care assistance options

There is a lot to consider when it comes to paying for your child’s treatment and finding education that fits their needs, but there are many resources available to help.

These resources include:

• Government programs
• Education and early intervention
• Financial assistance

Government programs

Your family may qualify for federal government assistance that can offer you additional income and health insurance. These benefits vary and can be accessed through your local government office and state government website.

Some of these programs include:

• Children’s Health Insurance Program (CHIP)
• Individuals with Disabilities Education Act (IDEA)
• Medicaid
• Social Security Disability Insurance (SSDI)
• Supplemental Security Income (SSI)

Reach out to your local government agency to fill out proper applications and get your family the assistance they need.

Education and early antervention

There are many options available to help ensure your child is getting the education that best serves their needs. You do not have to go through this alone. Be sure to consider these forms of education to determine which option best fits your child’s needs.

• Special education centers: There are many specialized centers that focus on children who require special education. These facilities have high-tech equipment and instructors trained to best educate your child based on their specific needs. Though this form of education can be costly, there are scholarships available for low-income families.
• Homeschooling: Homeschooling and private tutoring can be a great option to educate your child at a high caliber in the comfort of their own home. Instructors can assist your child one-on-one and help them develop in an effective way.

Financial assistance

Treatment for cerebral palsy amounts to $1 million on average — on top of normal living expenses. Financial support organizations can be of great assistance when paying for your child’s treatment and help alleviate any financial burdens you may face.

You may be able to access financial help through:

• Children’s Hemiplegia and Stroke Association (CHASA)
• UnitedHealthcare Children’s Foundation
• MORGAN Project
• Cerebral palsy lawsuits

To learn more about child care and financial support options, download our free Cerebral Palsy Guide. You don’t have to go through this journey alone.