When a child is diagnosed with cerebral palsy (CP), their entire family is affected. Parents must consider how their responsibilities as caregivers will evolve. Siblings must navigate having a brother or sister with some needs that may be different from their own. And extended family members need to contemplate what they want their role to be in the life of a child with CP.
Cerebral palsy lasts a lifetime, so a family’s involvement in the life of an individual with CP will likely go beyond that person’s childhood.
Families that communicate, cooperate, and also take time to care for themselves are likely to thrive and be a positive resource to a child with cerebral palsy.
Stress Is High Among Parents of Children With Cerebral Palsy
Caring for a child with cerebral palsy can sometimes put parents or caregivers at risk for experiencing their own physical and mental health challenges. One European study found that more than 30 percent of parents of teens with cerebral palsy experienced a level of stress that required the assistance of professionals. The study found that behavioral disturbances contributed more to stress than impairments to motor skills. (1)
Parents can also experience an increase in symptoms of depression and anxiety, particularly those who spend many hours per day providing care and who experience time pressure in relation to caregiving. (2,3,4)
Parents may go through periods of grief when a child is first diagnosed or following triggering events that occur later in the child’s life. (5)
Armando Contreras, the president and CEO of United Cerebral Palsy, recommends that parents trust their instincts and get themselves and their family plugged into a network of support as soon as possible.
“Families should not wait for their child to outgrow what may be a serious condition,” Contreras says. “If a child has cerebral palsy, then an accurate diagnosis will open the door for the child to services, including therapy, adaptive equipment, and other interventions that will help with development.”
In addition to getting services for the child, parents can benefit from family therapy and individual therapy that focuses on their own health and the health of their family. Parents of children with cerebral palsy can also find additional encouragement and resources in the form of support groups, both online and in their local community.
Communication Is Key for Couples
Having a child with a developmental disability can lead to an increase in marital strain or instability. (6) Often, one parent can end up overfocused on the child and feel resentful of their partner’s lack of involvement. The other might feel left out of the decision-making process or uninformed about the needs of the child.
Parents should work together to maintain open communication about their roles. They can discuss how each can play a more equitable part in caring for a child and how they can discuss challenges, frustrations, and disagreements with maturity and calmness.
Couples should also try to find at least a few minutes a day to be alone together and talk about themselves rather than their children. Extended family, siblings, respite care, and friends can help pitch in so that couples can have a date night or time to themselves to combat exhaustion.
Sibling Issues and Cerebral Palsy
Siblings of a child with cerebral palsy are in a unique position in the family. They often learn to be more patient, empathetic, and helpful than many of their peers, but they can also experience challenges from having a sibling with special needs. They may be jealous of the amount of attention received by their brother or sister or be fearful about their sibling’s health.
Siblings may feel pressure to succeed in ways their sibling with CP cannot, or they may feel they should not bother their parents with their own struggles or worries.
Parents who notice changes in a child's mood or behavior that seem concerning should talk to them about their concerns and, if appropriate, ask if they'd like to meet with a counselor, either individually or as a family, to talk about what’s going on. Signs of trouble might include changes in eating or sleeping, regression to younger behaviors, acting out, lack of interest in activities they once enjoyed, or mood swings.
To help siblings understand another sibling’s health condition, NYU Langone Health recommends that parents explain the condition to their children using age-appropriate language. As children get older, they may have more complex questions about cerebral palsy and their role in their sibling’s life.
Parents can also set aside scheduled time to spend with other children and address their needs. When possible and practical, parents should try to hold all of their children to the same rules and consequences.
And although it may be tempting to vent to a child when feeling stressed, parents should keep adult concerns, such as financial worries and marital issues, to themselves or discuss them with other trusted adults.
The Role of Extended Family
Extended family members are the most common form of social support for caregivers of people with cerebral palsy. Research has found that support from extended family can improve overall family functioning and emotional well-being after a diagnosis of cerebral palsy. (7)
Experts commonly recommend that extended family receive education about cerebral palsy and the challenges that families face, so they are better equipped to provide support for caregivers and the person with cerebral palsy.
Rather than waiting for specific challenges to arise, families can benefit from sitting down and discussing what role each person can play in supporting a child with cerebral palsy, as well as parents, siblings, and other caregivers. Some of these responsibilities might include providing transportation, helping with homework, picking up medication, babysitting, doing household chores, and providing financial or emotional support.
This type of planning can help prevent one caregiver from taking on too much and experiencing additional stress on their physical and mental health. When a child feels more connected to extended family, they are certain to benefit from these wonderful human resources.
Seeking Out Family Support
Caring for a child with special needs can be an isolating experience, so reaching out for support, whether from extended family or community organizations, is essential. Parents can talk to their child’s doctor to find out more about local groups and organizations that support families of children with special needs.
Parents and caregivers can also benefit from individual counseling or therapy to build tools for coping with stress and to encourage their own personal sense of resilience.
When families work together, they are better prepared to support a child with cerebral palsy. If you have a child with cerebral palsy, what steps can you take today to make sure everyone feels included, heard, and supported in your family?