Caring for a Child with Cerebral Palsy

Being told that your child has cerebral palsy (CP), a lifelong disorder, may be an unexpected and frightening experience for a parent. Cerebral palsy (CP) results from brain damage that occurs in a child’s developing brain. This may occur either before or during birth or within the first few years of a child’s life. Functional impairment is dependent upon the amount and location of brain damage, but symptoms generally do not worsen over time (CDC, 2013). CP affects muscle tone and purposeful movement, and may also be accompanied by various physical and cognitive symptoms including hearing and vision problems as well as speech deficits, learning difficulties and intellectual impairment (Colver, 2014). Studies reveal that approximately 41% of children with CP also have co-occurring epilepsy and 6.9% have co-occurring Autism Spectrum Disorder (CDC, 2013). Although CP is a life-long condition, treatment, therapy, and, in some cases, surgery may help a child to feel more comfortable and confident in his or her everyday life.

We offer a few tips for parents who are raising a child with cerebral palsy, which may also be applicable for parents of a child with other chronic conditions.

• It is normal to feel frustrated, lost, or saddened after you receive a diagnosis. While your child will need support, be sure to set a little time aside for yourself and to spend with your partner/family to process your own emotions. You will be better equipped to care for your child when you are healthy yourself, so make sure to get appropriate rest, eat well, exercise, and take care of your own emotional wellbeing (Boyse, Boujaoude, & Laundy, 2012).
• Learn about the condition and your child’s rights. Being informed about your child’s condition will help you to not only better understand what he or she is going through, but also to advocate for your child in medical, academic, and social environments. Searching online, speaking to medical professionals, and joining support groups are just a few ways in which to gather information after a diagnosis is made. For cerebral palsy specifically, there are support groups available through the United Cerebral Palsy Association and most medical centers (Polzin, 2011).
• Kids may imagine the worst when they are unsure of a situation, so be sure to communicate and provide age appropriate information for your child regarding his or her condition. Listen to your child’s concerns, and do your best to communicate so that your child knows what is to be expected in the present moment and in the future. More information on how to explain cerebral palsy to a child can be found at: http://cerebralpalsy.org/the-journey/recent-diagnosis/ and http://kidshealth.org/kid/health_problems/brain/cerebral_palsy.html#.
• Give your child choices when possible. Some tasks are required of children with chronic conditions, but know what tasks are more flexible in order to allow your child autonomy and flexibility. It is important to remind children that there are parts of their lives they can control, and to allow them to make choices that support their personal interests and individuality (Boyse, Boujaoude, & Laundy, 2012).
• Be hopeful but realistic. It is important to stay optimistic for your own personal health as well as for the health of your child. With chronic conditions, it is beneficial to teach your child how to maintain a positive outlook so that he or she can continue this outlook beyond childhood and into adulthood. Set realistic expectations for your child, but focus on the potential positive outcomes in order to maintain an optimistic environment (Boyse, Boujaoude, & Laundy, 2012). Celebrate your child for his or her strengths, and enjoy fun, special time together as a family. Recognize what makes your child happy and inspired, and explore these interests together as a family to remind your child that he or she is supported and loved.
• Research reveals that 15-18% of children in the United States are living with a chronic health condition, of which Cerebral Palsy is one (Boyse, Boujaoude, & Laundy, 2012). Each parent-child relationship is unique, but creating a balance between caring for your child and allowing your child independence is important for all parents of children with chronic medical conditions.

Sunfield Center psychologists are available to provide help and support to parents of children with special needs. To schedule an appointment, please call us at (734) 222-9277.

Resources:
Boyse, K, Boujaoude, L, & Laundy, J. (2012). Children with chronic conditions. Your Child: Development and Behavior Resources. Retrieved from http://www.med.umich.edu/yourchild/topics/chronic.htm

Colver, A., Fairhurst, C., & Pharoah, P. O. D. (2014). Cerebral palsy. The Lancet, 383(9924), 1240-9. doi:http://dx.doi.org/10.1016/S0140-6736(13)61835-8

Centers for Disease Control and Prevention. (2013). Data & Statistics for Cerebral Palsy. Retrieved from http://www.cdc.gov/ncbddd/cp/data.html

Polzin, S. J., Careta, F. D. P., Louro, L. D., & Laberge, M. (2011). Cerebral Palsy. In J. L. Longe (Ed.), The Gale Encyclopedia of Children’s Health (2nd ed., Vol. 1, pp. 449-456). Detroit: Gale. Retrieved from http://go.galegroup.com/ps/i.do?id=GALE%7CCX1918500159&v=2.1&u=umuser&it=r&p=GVRL&sw=w&asid=f8a6d5bb4ba44a47b37d1cf4468420e4