Living With CP

Living with Cerebral Palsy

Individuals with cerebral palsy may develop a variety of symptoms affecting their motor and cognitive functions. Depending on the precise locations of the brain injuries, symptoms may include spasticity or hypotonia, epilepsy, lack of balance, poor movement coordination, involuntary movements, partial or complete paralysis of the limbs, trunk, and neck, impaired chewing and swallowing, limited speech, hearing and vision loss, incontinence, and the inability to communicate, among others. Growing children and adolescents with cerebral palsy may also experience additional complications.

For instance, if children do not get enough exercise, they may be more likely to develop scoliosis and abnormally curved legs, both of which can lead to the need for surgical intervention. Individuals with cerebral palsy may also face a range of personal challenges. Parents frequently wonder what the future holds for their children and what their lives will be like. Despite the need for modifications and new accommodations, children and families can learn to live with disabilities and limitations. Listed below are the areas in which individuals with CP may encounter difficulty.

Mobility

Also known as anticonvulsant drugs, anti-epileptic drugs are commonly used to treat cerebral palsy-related seizures. These medications reduce the excitability of neurons in the brain, thereby decreasing the likelihood of seizures. Common anti-epileptic medications for cerebral palsy include phenobarbital, valproic acid, carbamazepine, and lamotrigine.

Phenobarbital is one of the oldest anti-epileptic medications and is frequently used as a first-line treatment for infants and young children with cerebral palsy who are experiencing seizures. Although it is cheap and has a long half-life, it has some undesirable side effects, including drowsiness and memory loss.

Valproic acid is another commonly prescribed antiepileptic medication for cerebral palsy. It is effective in treating a wide range of seizure types and has a relatively low incidence of side effects. However, it may be less effective in treating absence seizures and may cause liver toxicity in some individuals.

Carbamazepine is a common medication used to treat partial seizures and generalized tonic-clonic seizures in cerebral palsy patients. It may cause side effects including dizziness, drowsiness, and skin rash, and it may interact with other drugs.

Lamotrigine is an anti-epileptic medication that effectively treats partial and generalized tonic-clonic seizures in cerebral palsy patients. It has a low incidence of side effects and may also have mood-stabilizing effects, making it a good option for those with cerebral palsy and co-occurring mood disorders.

The use of anti-epileptic drugs for the treatment of seizures in cerebral palsy must be carefully monitored by a healthcare professional, as these medications can have a wide variety of potential adverse effects and drug interactions. Adjustments in dosage and close monitoring may be required to achieve optimal seizure control and minimize adverse effects.

Communication

A child’s inability to communicate with others can have a significant impact on their ability to go about their daily lives. Frequently, parents of children with cerebral palsy report communication difficulties with their children. However, with perseverance and the proper course of treatment, the family of a child with CP can significantly alleviate the burden.

It is important to remember that not all children with cerebral palsy will have difficulty communicating. However, it is highly recommended that all children with cerebral palsy undergo speech therapy with a certified speech pathologist. This method is beneficial because it equips children with tools they can use to address their immediate and future communication needs.

Without the ability to form words, some children with cerebral palsy are completely mute. When this is the case, auxiliary aids like communication boards with pictures, letters, and words can facilitate conversation. Tablet computers and other augmentative and alternative communication (AAC) methods are viable alternatives.

Meals and Snacks

It may be necessary to provide assistance when feeding a child with cerebral palsy, particularly if the child has severe mobility issues. There may be a need for you or another caregiver to assist your child with eating and drinking in addition to preparing the meals. Assisting your child with eating can be difficult, but a speech therapist can teach you how to do it.

Additionally, in order to satisfy their particular dietary requirements, a child who has cerebral palsy may require meals that have been specially prepared for them. Individually preparing meals for your child can be time-consuming, especially if you are also responsible for preparing food for the rest of your family. A diet rich in fruits, vegetables, and other nutritious foods is recommended for children with cerebral palsy; consequently, this approach may be ideal for providing a balanced diet for the entire family.

Sleeping

Getting a good night’s sleep is often taken for granted by the general population, but for a disabled child dealing with pain and mobility issues, it can be a monumental challenge. A good night’s sleep and getting enough sleep are two of the most important things you can do for your child’s development and future success.

If your child has difficulty falling asleep or staying asleep, your pediatrician and other medical professionals can provide assistance. Consider establishing a soothing bedtime routine, promoting physical activity throughout the day, and providing a nutritious diet for your child.

The most important thing you can do, however, is to make sure your child is comfortable in bed. This is a significant issue for many children with cerebral palsy, as their limited mobility can cause them discomfort. Consult a physical therapist to determine which sleeping position is most comfortable for your child.

Hygiene

Going to the bathroom, taking a shower, changing into clean clothes, brushing one’s teeth, and washing one’s hands are examples of self-care activities that should be done on a regular basis. All of these tasks are difficult for young children to complete without assistance, and children with cerebral palsy may require even more assistance in the long run.

Teaching your child to lie on his or her side, sit against a wall, or hold onto a stable object will assist him or her in becoming more independent when dressing. Likewise, the same holds true for bathroom and shower use. Once your child is able to sit up without assistance, provide them with a secure object to hold onto at all times, including when using the restroom or taking a bath. If your child uses the bathtub, you might want to invest in some non-slip mats.

Ensure that your child participates as much as possible in self-care activities such as bathing and tooth brushing. If your child is unable to do so due to a physical impairment, you will need to provide daily assistance. Until the child reaches an age where they can understand the importance of maintaining good hygiene on a regular basis, it is essential to make hygiene activities fun by turning them into games.

Playtime

Playtime must be incorporated into a child with cerebral palsy’s daily routine. Regardless of his or her disabilities, your child will continue to be curious about the world and eager to learn through play. Even if your child’s play is unlike that of other children’s, it will still serve an important developmental function.

Your child’s CP severity and age will determine the play options available to you. Some children with cerebral palsy can benefit from activities that do not require much movement, such as tossing a ball back and forth, while others with greater mobility issues may need to concentrate on other areas. The physical therapist working with your child can assist you in developing a play routine that is tailored to your child’s unique health and developmental goals.

Home Learning

All children benefit from additional home learning time. Homeschooling and specialized programs can give your child with cerebral palsy the advantage they need if they are struggling academically as a result of their condition. Learning interventions are most effective when started as early as possible to maximize their benefits for the child. Consider immediately the learning strategies you can implement at home to promote your child’s development.

Learning should be a daily activity that places primary emphasis on matters such as communication and the development of skills necessary for day-to-day living. Your child will develop greater independence and self-sufficiency with consistent practice and reassurance. Reading stories and practicing letters, words, and images on communication boards (if these are required) are examples of daily activities that will help your child improve their ability to communicate with others and will also foster the growth of their imagination.

Schooling and Inclusion

When compared to typically developing children, those with cerebral palsy are more likely to be left out of social and educational settings. Your child’s social, communicative, and emotional development, as well as his or her sense of belonging in the world, will all benefit from participation in standard classroom and extracurricular activities.

It’s not uncommon for parents to have to advocate for their children’s acceptance. An Individualized Education Program, also known as an IEP, is something that every child who has a disability ought to have. This plan is developed by a group of qualified individuals working in conjunction with the special education department at your school. The Individualized Education Program (IEP) will serve as a road map for your child’s education, including any special interventions or accommodations that may be required. ^[2]

Ensure your child receives as much general education as possible by advocating for it during the Individualized Education Program (IEP) planning process.

Abuse and Bullying

Most parents would prefer not to consider the possibility of abuse or bullying for their children, but statistics indicate that children with disabilities are more likely to be victims of such acts than their typically developing peers. The most likely perpetrator of abuse is a caregiver or another frequent adult companion.

Adults responsible for the care of a child are responsible for monitoring for signs of abuse and intervening as necessary. Any change in the child’s behavior that deviates from the norm or cannot be rationally explained should raise grave concerns.

A child with cerebral palsy is an easy target for bullying at school and in other social contexts. [3] Bullies target children they perceive to be vulnerable or out of the ordinary. A child with cerebral palsy may have a noticeable physical difference and have trouble communicating with others, reducing his or her ability to stand up for oneself or speak out when wronged.

Transition to Adulthood

As difficult as the process of growing up can be for any child, it can be especially perilous and difficult for a kid who happens to be disabled. Begin early in life by teaching your child to be self-sufficient. If the child is given the space and time to figure things out on their own, they will develop the skills and self-confidence required to make the transition easier.

There are numerous opportunities for people with cerebral palsy who are able to function independently after high school and no longer require their parents’ care to live on their own.

A child of average or above-average intelligence can transition successfully to college, but only if he or she attends a school that is a good fit and provides the necessary services and accommodations.

Some children with cerebral palsy may be more interested in technical schools than academic institutions. Programs that provide vocational education and training are excellent stepping stones to adulthood and independence. There are numerous institutions, including vocational schools and universities, that provide training for young adults with intellectual disabilities. In addition to teaching vital life and social skills, these programs help young people find employment and provide them with job training.

While training programs can be beneficial, parents are also responsible for ensuring that their disabled children acquire the practical skills that will give them the best chance of becoming independent adults.

Costs of Living with Cerebral Palsy

The financial burdens associated with cerebral palsy are a significant aspect of daily life for those affected by the condition. Families must consider this factor as soon as possible because the costs associated with caring for a child with a disability can quickly accumulate.

The costs associated with medical care, surgical procedures, medications, adaptive devices, specialized instruction, physical therapy, and eventually vocational education and training can add up to a substantial amount over the course of a child’s lifetime. ^[4]

Some of the ways that the costs can be covered include health insurance, Medicaid (if the patient is eligible for the program), government funding from programs that assist disabled people and families, community-based organizations, and nonprofit organizations that assist families with children who have disabilities.

The challenges of daily life are significantly more difficult for a person with severe cerebral palsy complications than for a person without a disability. With the proper planning, routines, medical care, resources, and support, a family can provide a great life for their cerebral palsy child, despite the significant strain that caring for a disabled child can place on its members.

Keep in mind that many professionals, including physical therapists, speech therapists, behavioral therapists, counselors, and pediatricians, can assist you and your child in adjusting to or developing a schedule that works for everyone. Consult with your child’s primary care physician if you need advice or referrals.