Living With Cerebral Palsy

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Living with cerebral palsy is a reality faced by many children. Parents often wonder what the future holds for their child and what their life will be like. Although adjustments and new accommodations must be made, children and families can learn to live with disabilities and limitations.

Mobility

Cerebral palsy most commonly affects movement. Mobility limitations, while greatly varied among individuals, are generally a life-long concern. Early on, it is important to start thinking about mobility issues and how you will help your child move as easily, freely, and comfortably as possible.

In a child with cerebral palsy, the extent of the child’s mobility is frequently assessed by numerous healthcare providers. Early evaluation and intervention can help your child gain better mobility.[1]

The child should have an orthopedic provider and physical therapy evaluation. These services will evaluate mobility and work to improve joint movement and overall strength. The child may also be placed on medication or have surgery to improve their movement.

As your child grows, mobility issues will become more apparent. This will allow you and your child’s healthcare team to plan strategies to minimize limitations from decreased mobility. This may mean procuring a wheelchair or other assistive equipment, like walkers, canes, and support devices, to help with transportation, hygiene, and eating.

Look to your health insurance, community organizations, charitable organizations, and government funding to help you pay for the devices your child needs to be as mobile and independent as possible.

Communication Challenges

Daily living can be interrupted when a child with cerebral palsy has trouble communicating. Communication problems are among the leading issues for parents of children with cerebral palsy. However, patience and the proper treatment plan can make things much less complicated.

Keep in mind that not all children with cerebral palsy will have problems with communication. However, speech therapy conducted by a licensed speech pathologist is recommended for all children with cerebral palsy. This practice helps to provide children with resources for communication needs now and in the future.

Some children with cerebral palsy are not able to talk at all. In these instances, assistive equipment such as communication boards with pictures, letters, and words can help make communication easier. Other options can include tablets or Augmentative and Alternative Communication (AAC).

Meals and Snacks

Some children with cerebral palsy, especially those with significant mobility limitations, will need assistance when it comes to meals and snacks. Along with preparing the food, you or another caregiver may need to help your child with eating and drinking. A speech pathologist can teach you the best techniques for assisting your child during mealtime.

In addition, a child with cerebral palsy may need specially prepared meals to meet their unique dietary needs. It can be challenging to make separate meals for your child, especially if you cook for your family. Since children with cerebral palsy need a high-quality diet with many fruits, vegetables, and other healthy foods, this could be an ideal way to create a nutritious diet for the entire family.

Sleeping

For most people, sleeping is simply something they do, but for a disabled child with pain and movement issues, sleeping can be a major challenge. To help your child be successful in all areas of life, good quality sleep in the right quantities is crucial. Sleep is essential for every child but may be more difficult for your child to achieve.

Your medical team can help you and your child if your child struggles to sleep. Try these tips to help your child sleep better:

• Make sure your child gets exercise throughout the day
• Ensure your child eats a healthy diet
• Create a calming bedtime routine

Most important, though, is to ensure that your child is comfortable in bed. This is a significant issue for many children with cerebral palsy because they can experience pain due to their decreased mobility. Work with a physical therapist to find the best sleep position for your child.

Daily Hygiene

Daily living activities consist of using the bathroom, bathing, getting dressed, brushing teeth, washing hands, and other forms of hygiene that occur daily. Young children will need help with all these activities; however, children with cerebral may need more long-term assistance.

Encourage your child to learn how to dress alone by teaching them to lie on their side, sit against a wall, or hold onto something sturdy while putting on clothes.

The same applies to bathing and using the bathroom. Once your child can sit up alone, ensure they always have something sturdy to grasp while bathing and using the toilet. Consider getting non-slip pads for your child’s bathtub.

Always encourage your child to participate in their hygiene activities, such as bathing and brushing their teeth. If your child is not physically able to do this, you will need to assist them daily. Make hygiene activities fun by turning them into games until the child is old enough to understand the importance of daily hygiene habits.

Daily Playtime

Playtime is essential for children with cerebral palsy and should always be incorporated into their daily schedule. Remember that even if your child has limitations, they will still crave new experiences and learn through play.

Your child’s play may look different than another child’s, but it will still be an important part of your child’s development.

Play activities will depend on your child’s age and cerebral palsy severity. For instance, some children with cerebral palsy can learn to toss a ball back and forth, whereas those with limited mobility may benefit from other types of activity.

Your child’s physical therapist can work with you to set up a play schedule that would best benefit them according to their physical and mental needs.

Daily Learning

Learning at home is beneficial to all children. If your child with cerebral palsy has cognitive disabilities, home education, and special education can help give them a needed boost.

The sooner you can implement learning interventions for your child, the greater the positive effect they will have. Start thinking about the kinds of strategies you can use at home to help your child learn.

Communication and daily living skills are some of the most critical issues to work on during daily learning. Constant practice and reassurance will help your child become more self-sufficient and independent.

Practicing letters, words, and images on communication boards (if needed) and reading stories daily will help your child learn to communicate better and expand their imagination.

Inclusion in School

Children with cerebral palsy are more likely to be excluded from activities and educational opportunities. Inclusion is important because it will help your child develop so that they become comfortable socializing, speaking up for themself, and simply feeling like an ordinary child, just like everybody else.

Parents often have to fight for inclusion. Any child with a disability should have an Individualized Education Plan, or IEP, created by a team of professionals through your school’s special education department.

The IEP will direct your child’s education and any particular interventions or accommodations needed.[2] While planning the IEP, push, as much as possible, for your child’s inclusion in general education.

Abuse and Bullying

Abuse and bullying are not situations that most parents want to think about, but the truth is that disabled children are more likely to be abused and bullied than non-disabled children. Abuse is most likely to come from a caregiver or other adult who spends a lot of time with the child.

Parents and caregivers must be aware of the signs of abuse and intervene if necessary. A significant, important sign of abuse is any change in the child’s behavior that seems unusual or cannot be explained.

At school and in other social settings, a child with cerebral palsy is at risk for bullying.[3] Bullies target children they perceive as being different or powerless. A child with cerebral palsy is likely to look different and may have trouble communicating with others, which takes away the child’s power to fight back or to tell someone what is happening.

Transitioning to Adulthood

All children and teens will go through some road bumps on the way to becoming an adult, but for a disabled child, this transition is even more fraught with risk and difficulty.

Begin to teach your child independence early in life. Let the child learn and do things for themselves to gain the skills and the confidence needed to make this transition smoother.

For those with cerebral palsy who have disabilities that are not severe enough to prevent them from becoming working, independent adults, there are many options for life after high school and life after living at home.

A child with average or above-average intelligence can transition to college, although they will need to find a school that feels right and offers the services and accommodations required.

Other children with cerebral palsy may be more interested in vocational education. Job training can be a great way to transition to adulthood and to work toward independence.

Vocational schools and even colleges provide training for young adults with intellectual disabilities. In addition to job training, these programs teach life and social skills and help place young people in jobs.

Training programs are useful, but parents also have a responsibility to help disabled children learn the kinds of life skills that will increase their chances of being successfully independent.

The Costs of Living with Cerebral Palsy

An important aspect of living with cerebral palsy is the cost associated with the condition. Living well with a disability can be expensive. Families must consider costs immediately to ensure their child gets the best care.

Healthcare, surgical procedures, medications, adaptive devices, specialized educational services, physical therapy, and later vocational training and other services can total $1 million or more over a child’s life.[4]

Ways to cover the costs include health insurance, Medicaid (if a family qualifies), government funding from programs that support individuals and families with disabilities, community-based organizations, and charity organizations that help families with disabled children.

Living with cerebral palsy presents many more challenges than living without a disability, especially if the complications are severe. It can be a significant burden on the family to care for a disabled child. Still, with good planning, routines, medical care, resources, and support, a family can provide a great life for a child with cerebral palsy.

Remember, if you ever need help adjusting or creating a living schedule that works for you and your child, numerous physical therapists, speech therapists, behavioral therapists, counselors, and pediatricians can help you. Contact your child’s primary medical caregiver if you need referrals or resources.