Living With Cerebral Palsy
This article has been fact checked by a Board Certified Pediatric Nurse Practitioner. Sources of information for the article are listed at the bottom.
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Learning that your child has cerebral palsy may be shocking and even upsetting at first. As a parent, you will begin to process this information and will probably have a myriad of questions and concerns. You may ask about what the future holds for your child; how abled your child will be; and what your child’s life will be like. Although adjustments and new accommodations will have to be made, you can enjoy life with your child, despite any limitations you may encounter. Learning about and anticipating some of these life changes may help ease you through this process.
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 comfortable 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. 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 and/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.
Daily living can be interrupted when a child with cerebral palsy has trouble communicating. Communication problems are among the leading issues that parents of children with cerebral palsy have. However, you can make things a lot less difficult with patience, coupled with the proper treatment plan.
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, using assistive equipment such as communication boards with pictures, letters, and words can help make communication easier. Other options can include tablets and/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 foods, 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 meal time.
In addition, a child with cerebral palsy may need specially-prepared meals to meet their unique diet needs. It can be a challenge making separate meals for your child, especially if you are cooking for your family. Since children with cerebral need a high-quality diet with many fruits, vegetables, and other healthy foods, this could be an ideal way to create a healthy diet for the entire family.
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 important 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. Some important things to do include: making sure your child gets exercise throughout the day, ensuring your child eats a healthy diet, and creating a calming bedtime routine. Most important, though, is to ensure that your child is comfortable in bed. This is a major 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 sleep position that is best for your child.
Daily Hygiene Activities
Daily living activities consist of using the bathroom, bathing, getting dressed, brushing teeth, washing hands, and other forms of hygiene that take place on a daily basis. Young children will need help with all of these activities; however, children with cerebral may need more long-term assistance.
Encourage your child to learn how to dress alone by teaching the child to lay on his or her side, sit against a wall, or hold onto something sturdy while putting on clothes. The same thing applies to bathing and using the bathroom. Once your child can sit up alone, make sure that 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 his or her own hygiene activities such as bathing and brushing teeth. If your child is not physically able to do this, you will need to assist them daily. Make the hygiene activities fun by turning them into games until the child is old enough to understand the importance of daily hygiene habits.
Playtime is extremely important for children with cerebral palsy and should always be incorporated into their daily schedule. Remember that even if your child has limitations, he or she will still crave new experiences and will learn through play. Your child’s play may look different than another child’s play, but it will still be an important part of your child’s development.
Play activities will depend on your child’s age and how severe his or her cerebral palsy is. 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 your child according to his or her individual physical and mental needs.
Learning at home is beneficial to all children. If your child with cerebral palsy has cognitive disabilities, home education along with specialized 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 right away 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 important 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), as well as reading stories on a daily basis will help your child not only learn to communicate better, but to expand their imagination.
Going to School and Inclusion
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 in such a way that he or she becomes comfortable socializing, speaking up for himself or herself, 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, which is created by a team of professionals through your school’s special education department. The IEP will direct your child’s education and any special interventions or accommodations needed. 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 that spends a lot of time with the child. Parents and caregivers must be aware of the signs of abuse and intervene if necessary. A major, 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. 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 to 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 himself or herself, so the child can gain the skills and the confidence needed to make this transition more smooth.
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 a normal or above average intelligence can make the transition to college, although he or she will need to find a school that feels right and that offers the services and accommodations needed.
Other children with cerebral palsy may be more interested in a vocational education. Job training can be a great way to transition to adulthood and to work toward independence. There are vocational schools and even colleges that provide training for young adults with intellectual disabilities. In addition to job training, these programs teach life skills, 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. Disabilities are expensive and it is crucial that families start thinking about costs immediately so that they can ensure their child gets the best care. Healthcare, surgical procedures, medications, adaptive devices, specialized educational services, physical therapy, and then later, vocational training and other services will cost a lot during a child’s life.
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 big burden on the family to care for a disabled child, but 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, there are numerous physical therapists, speech therapists, behavioral therapists, counselors, and pediatricians that can help you. Contact your child’s primary medical caregiver if you need referrals or resources.