Few things in the world are stronger than the relationship that bonds a parent and their child. Any severe injury to a child — especially something as debilitating and life-altering as a pediatric spinal cord injury — profoundly impacts the child and their parents in ways that many people struggle to put into words.
The National Spinal Cord Injury Statistics Center (NSCISC) estimates that there are between 247,000 to 358,000 people who are living with spinal cord injuries in the United States. The American Spinal Injury Association (ASIA) estimates that approximately 20% of spinal cord injuries occur in children and adolescents.
When your child suffers a traumatic SCI, what can you do to help strengthen and grow your relationship with with them? Here are a few suggestions for how you can maintain a close relationship after a pediatric spinal cord injury.
Relationships of Parents Who Are Also Caregivers
All children depend on their parents (or legal guardians) for physical, emotional and psychological needs — often expressed through demonstrations of care, compassion, understanding and love as well as by providing food, shelter, protection, and support.
Many of these needs increase for children with significant disabilities like SCIs who count on their parents — in particular, their mothers — to also serve as their daily caregivers. According to a study of 203 youths between the ages of 7 and 17 (averaging 12.7 years of age) that was published in Spinal Cord:
- 78% of caregivers were mothers,
- 14% were fathers, and
- 8% were other family members.
These numbers differ from older or adult spinal cord injury survivors who may be more independent or rely on the care of an unrelated personal care assistant (PCA) in lieu of a parent or other family member.
Many parents report feeling that the level of day-to-day care is a powerful bonding experience that helps bring them closer together with their children who may have previously been independent or emotionally closed off.
As a parent and caregiver of a child with a pediatric spinal cord injury, you are there for them during a time in which they are experiencing feelings of overwhelming sadness, pain, loss, and vulnerability. For you, it may feel like it’s an emotional balancing act — while you likely feel sympathetic toward them because of their injuries, you also still want to see them succeed and encourage them to feel motivated to fight for their optimal recovery and independence.
In addition to providing daily emotional and physical care, you can help them work on their recovery by engaging in different types of therapy at home, including speech, physical, and occupational therapy. You also can help them by driving them to and from their regular therapy appointments.
How a Parent’s Psychological State Affects Their Child
As a parent, you help your child navigate the variety of age-specific and injury-related challenges that will arise throughout their childhood. For parents of children with serious disabilities, research shows that parental functioning (parenting stress, individual psychosocial adjustment, and marital satisfaction) affects how well your child will be able to adjust to their injuries.
Research also shows that parents of youths with disabilities experience higher levels of stress than their counterparts with able-bodied youths. According to an article published in the Archives of Pediatrics & Adolescent Medicine, “More than 21% of families with a disabled child experienced a work, sleep, and/or financial burden as a result of the child's disability, with work-related burdens being most common (19.3%).”
Encourage Your Child to Engage in Social Relationships
Children with chronic illnesses or disabilities are at higher risk of psychological morbidity — with levels of psychological maladjustment increasing by 10-15%. However, engaging in socialization and developing positive relationships with others is shown to have positive benefits for children with pediatric spinal cord injuries.
According to the aforementioned Spinal Cord research:
“Among youth with limb deficiencies, poor parental mental health predicted child's mental health; however, this relationship was statistically eliminated when taking into account children's perceived social support. Identifying protective factors such as social relationships can foster interventions that enhance positive outcomes instead of just reducing negative ones.”
Because social relationships can positively influence the mental health of a child with a pediatric spinal cord injury — even in the face of adverse caregiver outcomes — all efforts should be made to help them build positive relationships with other children their age. This, in turn, can help your relationship with your child in that they can have a more positive attitude or mindset.
Give Them Space to Learn and Grow on Their Own
Although you mean well, it is easy to make your child feel like you’re “smothering” them by being there for them too much. While being close by is essential so you can help your child when they need it, you also need to be willing to back off and let go as well. This means giving them space that allows them to do things on their own and even make mistakes. Not only will showing this trust help them to grow as individuals and be more independent, but it also will help to improve your relationship with them by helping them feel like you believe they are capable on their own.
Learn more about caring for a child with a spinal cord injury. Download our free guide by clicking on the image below.
