Living with Cerebral Palsy

Children who are diagnosed with Cerebral Palsy are likely to live just as long as the general population, with the exception of severe cases1. As medicine and healthcare advances with earlier diagnoses and better therapies, it is crucial to give these children the best possible quality of life. Learning that your child has cerebral palsy can be shocking and upsetting. Through adjustments and accommodations, your child can have a mostly normal life. Accommodating a handicapped child can be a daunting task, especially financially. There are many resources available to parents of CP patients, including health insurance, grants, and financial aid through support programs. It is important to rely on your healthcare team, as well as online resources and support groups of other parents.

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Lifestyle

CP is a disease that largely affects movements. Thus, mobility can be limited affecting the child’s independence. After a CP diagnosis, it is important to begin thinking about accommodating your child’s needs to help him or her move around easily and as comfortably as possible. For some, this may mean a motorized wheelchair and allowing for wheelchair accessibility in the home. For others, this may simply mean braces or canes. Mobility in children with CP is assessed by healthcare providers often, as early evaluation and intervention is critical in improving mobility outcomes. The healthcare team will guide you in which accommodations need to be made, and when it is important to do so.

In patients with more severe forms of CP where communication is negatively impacted, quality of life can be extremely low. Imagine needing help or having a concern, and not being able to properly voice that to those who can help. It can also be frustrating for the parents and siblings of patients with CP, as they try to guess what the patient is trying to say. Speech therapy is another important early intervention that can help the patients learn how to form words and speak. In patients where communication is impossible, boards with pictures, letters, and words can help convey what they are trying to say by simply being able to point2.

There are so many different resources found online that can aid in choosing the best adaptive equipment for your child. There are exchange sites that provide gently used equipment at reduced costs, or you can even borrow certain things like braces and canes. While it can be overwhelming to think about the different devices your child might need, there are a lot of different ways to purchase or go about acquiring these devices. It’s also important to read reviews of as many brands and types of devices so you can save money and time.

Activities of Daily Living

Eating, sleeping, and basic hygiene are important aspects of daily life. While these might be easy tasks for most people, we cannot forget that patients with CP may really struggle performing some of life’s simplest activities. Severe forms of CP can leave children unable to eat or feed themselves. The patient’s care provider must be able to prepare easy-to-eat meals and may also have to feed them. Some patients may even require a feeding tube, which would require the caretaker to prep the tubing and the feedings each time, as well as take care of the insertion site on the abdomen. CP patients also have different dietary needs than most children, which can make mealtimes challenging for a family. It is very important that CP patients have a healthy diet full of fruits and vegetables – this can be helpful in promoting a health diet for the whole family! Speech pathologists can help teach the child how to swallow and eat properly, or they can help you learn how to best feed your child.

While many of us think of sleeping as a simple task, for children with a movement disorder, it can be almost impossible. Spastic tremors and movements, along with pain, can make sleep a high-anxiety time of day for caretakers and patients alike. Making sure your child gets plenty of exercise throughout the day is one way to ensure they get great quality sleep at night. This will tire out their brains and muscles to help decrease involuntary movements. Also, a healthy diet and a calming bedtime routine can help relax their mind. While these things are good habits for any person, they are vital to the CP patient. Comfort and pain are two of the largest factors that affect the child’s sleep. Making sure they are comfortable in bed, with pillows and much support can help reduce pain, especially on high pressure points of the body. Physical therapists can help identify necessities for sleep, including the best sleeping position for your child.

Hygiene is another simple, yet important task for children to be able to perform. This includes activities such as using the bathroom, taking a shower, brushing teeth, getting dressed, and washing hands. Some children with CP might need assistance only for a short time, until they are old enough. However, those with more severe forms of CP might need lifelong assistance in performing these tasks. Potty training can be more difficult for children with CP than it is for other children. Children with CP might not exhibit the same cues that they are ready to begin potty training, and they could have issues with constipation or involuntarily urination. It is normal to have a lot of questions about potty training your child, and other milestones. Consulting with your healthcare team, online resources, and support groups may help you to answer some of these questions. Also, physical therapists, again, will help the child learn how best to perform these tasks on his or her own. Each child will have different needs. For example, for some children, it may be easier for them to dress themselves lying down or sitting against a wall. It is important that homes are outfitted with handrails and non-slip pads in the bathroom and shower to prevent injuries. The best way for children to learn how to perform these tasks is to do them without assistance, when possible. This can be a frustrating process for both the child and the parent and can take a lot of time out of your day. Encouragement and patience are two things that will help tremendously through the learning process! Remember, utilize your support groups and resources when you are feeling discouraged.

School and Playtime

Even though your child may have limitations, it is still important for him or her to have new experiences and learning opportunities. Every day should have playtime incorporated into the schedule, whether it’s alone or with peers3. Children can learn a lot through play, so while this may seem like a silly task to prioritize, it comes with benefits. Again, having a physical therapist on your care team is important to be able to figure out which kind of play is best for your child’s limitations. Some children may be able to play basketball in a wheelchair, and some may be able to toss and catch a ball while standing. Whatever the activity, we can make sure it’s modified to fit your child’s needs.

There are many resources for adaptive activities and camps for children with CP. Online, you can also find a list of wheelchair accessible playgrounds across the country. Having your child with CP involved in recreational activities not only provides a sense of normalcy for the child and the family, but it also creates social interaction and relationship building for the child. And, bonus! You get to interact with other parents who are walking down a similar path, as well! Being as active as limitations allow is extremely important for children with CP, in an effort to reduce muscle shortening and promote functional strength – so that he or she can have the strength it takes to brush their teeth or use their wheelchair!

Living with CP has its complications, but it also can be extremely rewarding and, maybe, even close to ‘normal.’ Information and resources available to you will help you build incredible strength as a parent of a CP child. Your child should still experience most things healthy children experience, like playing sports, taking a vacation, and getting dressed each morning. Rely on your care team of providers to help guide you in the process.

If you’re interested in learning more about daily living with CP, refer to the below websites:  

http://cpdailyliving.com/ 

A blog post from an adult with CP:  

https://healthblog.uofmhealth.org/brain-health/living-cerebral-palsy-part-of-my-life-not-my-whole-life 

https://cparf.org/ 

https://www.cerebralpalsyguidance.com/cerebral-palsy/living/ 

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