Your child receiving a cerebral palsy diagnosis can be intimidating. You may have concerns about providing them with the proper care and development support, and you likely have more questions than you know what to do with.
But even though caring for a child with cerebral palsy can be challenging, many parents and family caregivers also find it filled with meaningful moments that strengthen family bonds. With a supportive care team and helpful cerebral palsy resources, you can help your child reach their full potential.
- What Is Cerebral Palsy?
- How Is Cerebral Palsy Diagnosed?
- How Do You Care for a Child with Cerebral Palsy?
- How Does Cerebral Palsy Change as a Child Grows?
- What Support Is Available for Families Caring for Children with Cerebral Palsy?
- Caring for a Child with Cerebral Palsy FAQs
What Is Cerebral Palsy?
Cerebral palsy (CP) is the most common movement disability in children. It occurs when the part of a child’s brain that affects muscle tone, movement, and motor skills is damaged. This damage typically occurs before, during, or shortly after birth.
There are three main types of cerebral palsy, with spastic CP being the most common:
- Spastic CP: Increased muscle tone and stiffness, sometimes leading to awkward movements affecting one or more parts of the body, such as the arms, legs, torso, or face
- Dyskinetic CP: Difficulty controlling movements, often making standing or walking challenging
- Ataxic CP: Balance and coordination difficulties
Every child with CP has needs that can vary widely depending on their individual symptoms and development. The disease itself does not worsen over time, but symptoms can range from mild to severe and may change, meaning your loved one’s level of function may fluctuate. Some children may walk independently while others may need mobility aids such as walkers, braces, or wheelchairs.
Children with CP are also at a higher risk of developing other medical conditions or deficiencies than other children. This includes speech, vision, or hearing challenges; gastrointestinal problems; mental health conditions; sensory disorders; epilepsy; learning challenges; and more.
You may notice some of these while your child is still an infant or toddler, while others may not develop until they're an adult. Talk to your child's pediatrician if you have any concerns about their development. The sooner your child receives medical treatment or therapies to address these issues, the better.
How Is Cerebral Palsy Diagnosed?
Cerebral palsy is typically diagnosed in early childhood, often before the child turns three years old. Early signs of cerebral palsy in children may include:
- Delayed motor development
- Failure to reach milestones such as rolling over, sitting, crawling, or walking
- Appearing limp
- Seizures
- Unusual, exaggerated, or hard-to-control movements
If any of these symptoms are present in your child, your pediatrician will perform developmental screenings and short tests to look for specific motor or language delays. They may make a referral for a neurological evaluation to help determine whether your child has a neurodevelopmental disorder or lab tests to identify any other conditions that could be causing or contributing to the symptoms. Brain imaging, such as an MRI, can help visualize the brain’s structure to look for abnormalities that may suggest structural changes in the brain.
How Do You Care for a Child with Cerebral Palsy?
Every child with cerebral palsy will need different levels of support. Once you have a team of medical specialists in your corner, caring for a child with CP often feels more manageable. It can help to establish daily routines and support systems that work for both you and your child.
Build a Care Plan
Your child's care plan is the foundation to help them reach their full potential while living with CP. It not only helps you address concerns or challenges that are specific to your child, but it also gives you valuable resources to turn to when you have questions. Their care plan may include:
- Medical Team: Neurologists, pediatricians, therapists, and nurses to monitor your child’s health, assist with scheduled appointments, and provide additional care when needed
- Therapies: Physical, occupational, and speech therapists to work with your child and establish home exercise programs
- Medication Management: Over-the-counter (OTC) and prescription medicines to relax stiff muscles or ease pain, as outlined by your child’s medical team
- Assistive Devices: Braces, walkers, wheelchairs, glasses, hearing aids, communication devices
- Transportation: Specialized transportation for children who are medically fragile or need a wheelchair
- Schools & IEP: Specialized educators to facilitate the transition to a local school and assist with developing an individual education plan (IEP) for your child
- Caregiver Support: Training, counseling, home health visits, or respite care
Coordination between all the specialties is crucial to ensure your child receives well-rounded care and education that enhances their strengths and supports their weaknesses.
Support Daily Routines & Development
Once a care plan is in place, you can build consistent, daily routines that support your child’s motor and developmental goals, reinforce therapies at home, and support communication and emotional regulation.
Every child's and family's routine will look different based on what kind of help and support they need. For example, a child with speech delays may need a dedicated time each day to work on speech skills and communication through play or specialized therapies. A child with swallowing difficulties may need to follow a specific diet or use specialized equipment to eat. A child who cannot move well on their own may need to be repositioned frequently throughout the day to prevent complications, such as pressure ulcers, and maintain comfort.
Your child's pediatrician or therapists can provide recommendations on how to build a routine that supports your child.
Ask About Medical Treatments & Therapies
While there is no cure for CP, a variety of treatments can significantly improve function and quality of life for children with cerebral palsy.
- Physical therapy can help improve and maintain muscle strength, mobility, and coordination.
- Occupational therapy teaches daily living skills and develops fine motor skills to encourage independent activities.
- Speech therapy supports communication efforts and teaches safe eating practices.
- Hearing aids or glasses can support vision or hearing deficiencies to maximize educational pursuits.
- Medications, assistive devices, or surgical interventions may be used to manage pain or spasticity.
Foster Social Connection & Inclusion
Social connection may seem difficult for a child with CP, especially if they have significant developmental delays or communication difficulties, but with help from medical professionals, educators, family, and friends, you can help your child develop strong, meaningful relationships with peers, school friends, teachers, and family members. This might look like:
- Playing games that encourage interaction and teach social skills
- Taking them to local parks or on errands with you
- Experiencing museums, aquariums, or other places that spark their interest
- Visiting community centers or attending CP support groups, where they can interact with other people
How Does Cerebral Palsy Change as a Child Grows?
CP does not worsen over time, but a child’s functional needs, mobility, communication, and support requirements will change as they grow. Each stage of development will present its own challenges and rewards, from infancy into adulthood.
Infants
When they are babies, children with CP may need:
- Help with movement to develop strength and coordination and prevent contractures of the arms and legs
- Specialized equipment to help them eat
- Alternative communication methods, such as sign language
Toddlers
As your child reaches the toddler years, they may need additional help with mobility as they begin to move around more and explore their environment. This may include:
- Reinforcing therapies through play and fun activities
- Hearing aids, glasses, or communication devices, such as computers with voice synthesizers
- Support from speech-language pathologists
Your medical team can help you develop an Individual Family Service Plan (IFSP) that describes your family’s needs, determines the specific services your child and family will need going forward, and supports the transition into a school environment.
School-Age Children
School-age children typically thrive when transitioned to a school where they can interact with other children their age, develop greater independence, and connect with others. Supportive therapies, such as occupational or recreational therapy, may help them explore the world and their own creativity, provide an outlet for emotions, and support communication.
Your child may qualify for an IEP to receive special education services from public schools. Mobility aids can also help keep your child more mobile and connected to the world around them.
Teens
Adolescence presents a transition to a more supportive role for many families and caregivers. Many teenagers with CP enjoy living as independently as possible while still receiving support for mobility issues or educational goals. Young people with CP can learn to drive a car, cook, keep a house, or get a job with a little help and the right resources.
Adulthood
As your child transitions into adulthood, medical conditions that often accompany CP, such as heart or lung problems, may become more of an issue. They may need additional support with:
- Scheduling or attending healthcare appointments
- Navigating stress, pain, or fatigue caused by osteoarthritis or other musculoskeletal problems
- Securing accommodations at work
- Dealing with challenges in their sex lives due to skeletal and muscle issues.
- Obtaining medical support for incontinence or swallowing problems
- Treating mental health and depression
Despite these challenges, many adults with CP live full and rewarding lives.
What Support Is Available for Families Caring for Children with Cerebral Palsy?
When caring for a child with CP, parents and family caregivers have several resources available to help, including but not limited to:
- Respite care to give caregivers temporary relief to reduce burnout
- In-home pediatric nurses, home health aides (HHAs), and therapists to support you and train you to provide great ongoing care at home for your child
- Special-needs advocacy organizations to support you and keep you informed, such as United Cerebral Palsy, Cerebral Palsy Foundation, Cerebral Palsy Research Network, and Cerebral Palsy Guide
- Government assistance programs to help you get the equipment and resources you need, such as Supplemental Security Income, Social Security Disability Insurance, Medicaid, Section 811 Supportive Housing, and National Association of Councils on Developmental Disabilities
- Caregiver mental health resources to help you be the caregiver your child needs, such as National Parent and Youth Healthline, Caregiver Action Network, and Easterseals
- Peer support groups to encourage you and help you realize you're not alone, such as Parent to Parent USA, The Arc of the United States, and MyCP Forum (part of Cerebral Palsy National Research)
Your child's pediatrician or therapist may be able to provide recommendations for helpful resources for your specific situation.
Frequently Asked Questions About Caring for a Child with Cerebral Palsy
Is cerebral palsy genetic?
Yes, cerebral palsy can be caused by genetic changes.
When is cerebral palsy typically diagnosed?
Cerebral palsy (or CP) is typically diagnosed in early childhood, often between the ages of 1 and 3, when developmental or motor delays become apparent.
Can cerebral palsy be cured?
There is no cure for cerebral palsy, but physical, occupational, and speech therapy treatments, along with assistive devices and specialized education programs, can improve your loved one’s quality of life and functional abilities.
Can a child with cerebral palsy live a normal life?
With the support of family, friends, and other caregivers, many children with CP can lead fulfilling lives into adulthood.
Lean on BrightStar Care® to Support Children with CP
Caring for a child with CP has its challenges, but working with an experienced in-home pediatric care team, you can develop care plans and routines that can support your child throughout their life.
BrightStar Care can help. Our pediatric nursing care, special-needs caregiving, in-home therapies, and respite care services can help you provide your child with the best possible care. Our in-home services can support you as you develop and maintain routines, manage medical needs, and ensure caregiver well-being. Find a location near you, contact us online, or call (866) 618-7827 to learn more about how BrightStar Care offers A Higher Standard®.