Caring for People With Cerebral Palsy

Cerebral palsy (CP) is a term that covers a range of physical disabilities that interfere with the ability to move. It's a neurological disorder caused by injury to the brain while a mother is pregnant or shortly after the child is born. Symptoms of CP are often noticed during infancy or the preschool years. If you're caring for a child with cerebral palsy, when it comes to school, discipline, the teen years, and transitioning to adulthood, it helps to have some concrete strategies to help your child thrive.

School Strategies

Many of the physical movement issues involved in CP can lead to challenges at school. Difficulty controlling muscles can make it hard to move around a classroom. The tendency for spasms and other involuntary movements can be worsened by having to sit for prolonged periods of time. Issues with speech and language can make it difficult to answer questions and read out loud. Speech and language issues can make it hard to make friends and socialize with classmates who may not understand why your child has these issues. Because of all these potential complications, it's important to implement strategies to help your child succeed at school.

Team up with your child's school to get needed services and accommodations. Students with CP usually meet the qualifications for either a 504 plan or an individualized education program (IEP)—specific plans that public schools must follow to meet the needs of special needs students.

Which plan is right for your child will depend on your child's specific experience with CP, and how he interacts in the school environment.

Briefly, a 504 plan is created to help a student with an identified disability to be able to access and participate in school. An IEP is a specific education plan designed for a child with special needs.

While 504 plans make school accessible to students with disabilities, IEPs often go further into changing the curriculum and learning expectations to match a child's abilities and needs.

The details and differences of these plans may be complicated, but starting the process for accessing services for your child is pretty simple. Simply go to the school and request that your child is evaluated for special ed services or a 504 plan. Make the request in writing or via an email so that you have a record of the request you are making.

Keep up communication between school, teachers, and your child's providers. Children with CP often see different therapists and providers both in and out of school. For example, your child may work with a speech therapist at school while also having private therapy outside of school. Children with CP often have other unique differences that may require treatment or therapy, such as a hearing or vision specialist.

It can be helpful to view all of these people involved in your child's education and treatment support as a wide-ranging team, with you as the manager. Keeping in communication with your child's teacher and letting different providers know about changes in progress or development can help everyone to coordinate together for the best support for your child.

You know your child's abilities and needs better than anyone else. By developing good, open relationships with all of your child's educators and providers, you will be in the best position possible to advocate for your child's needs.

Make sure there's an accessible classroom floor plan. Mobility issues can make it difficult to walk between desks or move between workstations. Fortunately, teachers can take your child's movement needs into consideration when crafting their classroom layout. Teachers may need to make arrangements for getting different tables or seats for their classrooms, so try to let your child's teacher know early about your child's movement needs.

Accommodate daily movement and exercise needs. Today's teachers are trained in how to meet the needs of diverse students. A child's life during the school day includes more than classroom academic time. Some other areas to consider:

  • Physical education teachers can find ways to include students with CP into games and activities whenever possible.
  • Older students with CP may need extra time to get between classes, so they can benefit from leaving class early to avoid busy hallways with traffic that's difficult to navigate through.
  • Check with your child's occupational or physical therapist for personalized suggestions. These providers often stay current with the latest in adaptive equipment and room design concepts.

Keep socializing with school peers in mind. Learning how to make friends and get along with others is an important life skill your child will need in the future. Forming social connections is also important for your child's emotional health and well-being.

Talk with your child's school about how the school teaches all of their students to be kind to one another—even students who appear different or have different needs. Teachers can create a tolerant and supportive classroom environment so that each student can form friendships and learn to work with others.

Encourage your child to participate in extracurricular activities that interest him. Extracurricular activities, such as sports teams, scouting, and hobby clubs, can help your child meet other children with similar interests and provide time together to bond over those interests.

Encourage your child's personal interests and abilities. Like all children, your child has his own unique interests and special talents. These grow and develop over time as he gains new physical abilities and skills. You may be concerned about your child already having enough to do since managing school can be challenging, but outside activities that are based on your child's interests can give him a nice break from the demands of school. He will likely also gain confidence as he continues to nurture his abilities.

Behavior Problems

Research shows that kids with cerebral palsy tend to exhibit more behavioral problems than kids without. This can be due to frustration with limitations, potential sleep deprivation because of sleep difficulties, which are more common in kids with CP, learning disabilities and speech difficulties that are associated with CP, and even chronic pain for some children. The behavioral problems kids with CP are most likely to have include:

  • Peer difficulties: Because CP can cause speech problems, communicating with and relating to peers may be difficult for your child. Physically keeping up with peers can also be a challenge, making it hard to fit in.
  • Emotional: Kids with CP tend to have more problems with regulating their emotions, resulting in temper tantrums, emotional outbursts, and difficulty completing tasks.
  • Hyperactivity: Research shows that kids with CP may be more likely to have attention-deficit/hyperactivity disorder (ADHD) than the general population, and even those who don't have ADHD are often hyperactive.
  • Conduct: Kids with CP tend to be more argumentative, defiant, and non-compliant than other kids.

Discipline Strategies

It’s important to take the factors that contribute to your child's behavior problems, as well as his personality and abilities, into consideration when you're establishing a discipline plan. Some strategies work better for certain children than others, so it may take some trial and error to figure out what's best for your child. Here are some effective discipline strategies that can improve behavior problems in children with cerebral palsy:

  • Work on social skills. Your child's physical limitations may contribute to feelings of sadness, isolation, or loneliness and he may have a hard time getting along with other kids. Teach him how to solve problems, resolve conflict, cooperate, and how to be a good friend. Role play is a great way to work on social skills, as is getting him involved in groups where he can interact with other kids.
  • Channel your child's energy. Physical limitations may also make it difficult for your child to get rid of some of the excess energy all kids have, especially if he's hyperactive too. Find activities that are within his limits, such as swimming or riding an adaptive bicycle. If you're unsure what activities might be a good fit for him, check with his physical therapist.
  • Teach your child how to keep emotions in check. Help your child learn to recognize when he's getting close to a meltdown and teach him how to take a few deep breaths or count to 10 before he explodes. Talk to him about ways he can soothe himself when he's feeling upset, anxious, or sad. When he's calm, discuss different ways he can behave to express his feelings in a healthy manner.
  • Praise good behavior. It isn't helpful to praise kids for every little thing because the praise becomes less meaningful, but when your child does behave well, works hard, or tries something new, let him know how proud you are and that you notice. This reinforces the good behavior and motivates him to keep trying.
  • Consider a reward system. A sticker chart for younger kids or a daily reward system that rewards appropriate behavior with privileges like screen time for older kids can be extremely motivational.
  • Be consistent with consequences. Kids thrive on consistency, so it's important both to make sure the consequences fit the misbehavior and that you always deliver the consequences. We all have consequences for our actions, so teaching him this at an early age helps to pave the road to success. Have a clear set of rules with a clear set of consequences so he knows what to expect.
  • Offer choices when possible. Some things are not optional, like going to school, but when you can, let your child make his own choices in small things, such as what shirt to wear or if he'd rather eat a banana or an apple. Because he lacks control over many aspects of his life, including his ability to move his own body, giving him choices can help foster a sense of independence and empowerment and will likely eliminate some power struggles as well.

Teen Years and Beyond

The teenage years can be difficult for all parents and teens, but when your teenager has special needs too, it can be even more challenging.

Independence
Remember that your teen wants to be independent, just like all teens. Be sure to give him needed space and let him do anything he can by himself to help foster that independence and sense of responsibility. Support him in advocating for himself too, whether it's with his doctor, therapists, or teachers, as he'll need this skill when he's on his own.

Skills for the Future
Planning for your child's future should ideally start when he is in high school. If he is able to cook for himself, do laundry, and other tasks of daily living that we all typically do for our kids, start working on teaching him those skills. Consider opening a checking account for him and teaching him about paying bills and money management. Encourage him to do his best in school and to complete his chores at home to help him develop a good work ethic.

Transitioning to Adulthood
If your child has mild or moderate cerebral palsy, he will likely be able to go to college, hold a job, and live independently, possibly with some modifications in his living and work situations. Many cities have centers for independent living where your child can live in a group setting and work on independent living skills. Other options include living at home or with relatives, living with roommates, living alone, and income-based housing.

Thanks to the internet, many people with CP are able to work from home and earn a good living. There are also plenty of employers who will accommodate your child's needs. If these aren't options for your child, the Centers for Independent Living has a multitude of resources to help, including job training, special needs college scholarships, employment opportunities, and counseling.

Kids who are severely affected by CP may be able to live independently as long as they have help with their tasks of daily living, or they may need lifelong care, depending on how their CP affects them. There is government assistance for adults who are unable to work due to disability, as well as cerebral palsy residential living centers and other state and private living centers if you become unable to care for your child. If you're a caregiver of an adult child, be sure to look into respite care, so you are getting regular breaks (see Get Support below).

Resources
There are numerous educational and financial resources out there for you and your child that can be tremendously helpful through every stage of life. Actively search through them, as well as what your community offers, and take advantage of everything you can to help your child live the best life possible. Talk to other parents about what services they've found as well.

Get Support

It's stressful to care for someone else, especially someone with special needs, so make sure that you have plenty of support and that you're taking time out for yourself to relax and feel refreshed. If you're stressed out, your child will feel it and your stress can actually affect his behavior in a negative way, though he (and you) may not be conscious of it. Here are some other ways to get support:

  • Joining an online or community support group can be invaluable and a safe place to share your feelings and concerns with other parents who are in similar situations. This also gives you the opportunity to be a support to others.
  • Enlist your child's support team in helping you come up with discipline strategies or ways to make school a better place for your child.
  • No matter your child's age, caregiving takes a toll. Check with your state's Department of Human Services or online for respite care services that are available in your area so you can get a break. Respite care involves hiring someone to care for your child temporarily while you take some needed time off. Normally, you're allotted a certain amount of money per year, which you can use in any way you want throughout the year to pay your caregiver.
  • If you feel an excessive amount of anxiety or stress, consider seeing a mental health professional who can help.

Sources:

Brossard-Racine M, Hall N, Majnemer A, et al. Behavioural Problems in School Age Children With Cerebral Palsy. European Journal of Pediatric Neurology. 2012;16(1):35–41. doi:10.1016/j.ejpn.2011.10.001.

Centers for Disease Control and Prevention (CDC). 11 Things to Know About Cerebral Palsy. U.S. Department of Health and Human Services. Updated March 26, 2018.

Colver A. Why Are Children With Cerebral Palsy More Likely to Have Emotional and Behavioral Difficulties? Developmental Medicine & Child Neurology. 2010;52(11):986-986. doi:10.1111/j.1469-8749.2010.03721.x

Rackauskaite G, Bilenberg N, Bech BH, Uldall P, Østergaard JR. Screening for Psychopathology in a National Cohort of 8- to 15-Year-Old Children With Cerebral Palsy. Research in Developmental Disabilities. 2016;49-50:171-180. doi:10.1016/j.ridd.2015.11.019.

Shank LK, Kaufman J, Leffard S, Warschausky S. Inspection Time and ADHD Symptoms in Children with Cerebral PalsyRehabilitation Psychology. 2010;55(2):188-193. doi:10.1037/a0019601.