Spinal Cord Injury in Children: A Parents Post Injury Guide

Being a parent is one of the most rewarding, joyful, and challenging things in life. When your child has a spinal cord injury (SCI) it is life-changing for the entire family. Parents want to provide their children with all the love and support they can, and there are many questions parents have after their child has a spinal cord injury. In this article, we will address some of the most pressing post-injury concerns.

Immediately Following Spinal Cord Injury

Immediately following injury, children receive treatment and rehabilitation to heal, develop the skills needed for maintaining physical and emotional health, learn how to apply these skills to daily life, and work towards reintegrating back into their community. Longer-term hospitalization and/or inpatient rehabilitation are usually needed to complete this process, and an interdisciplinary team of doctors, nurses, specialists, and therapists (physical, occupational, and/or speech) work with parents and the child to achieve this goal. This team of healthcare professionals educates the family on how to best prepare for life after hospitalization and will provide specific information on how to best care for your child at home based on their particular needs.

Rehabilitation for Children with Spinal Cord Injury

Once a child is stabilized, parents work with the medical team to map out a rehabilitation plan, and research facilities that will support the child’s recovery and ongoing health. The age of the child at the time of their injury plays an important role in selecting the proper facility. Facilities must be equipped for a child’s particular needs, so it’s important to do thorough research, and it’s never too early to start this process. The right facility needs to work with the child’s injury, the family’s overall needs, and insurance requirements. When treating a child with SCI, care should be family-focused. Parents should be included in all aspects of the child’s care and involved in every step of the process. A good place to start is CARF International, the Commission on Accreditation of Rehabilitation Facilities. Look for a special designation of spinal cord injury treatment, as well as being a CARF designated rehabilitation center. Although there aren’t many facilities specifically accredited for children with SCI, many major children's hospitals have rehabilitation programs that may meet your child’s needs, so it’s important to investigate those options as well. Many adult rehabilitation centers will accept teenagers, so it’s important to ask.

Questions to Ask a Pediatric SCI Facility

It’s not possible to list all the questions parents have post-injury, but here are some of the more important considerations:

Do you have a specialized program for pediatric spinal cord injured/disease patients? What are the age requirements?
How many children with spinal cord injury/disease does your facility admit each year?
Do you have a school program at your facility to help keep up with classwork?
Are siblings and friends allowed to visit?
What level of involvement do you expect from the parent(s)?
Do you provide training in care issues for the parent(s)?
Do you provide family housing near the hospital?
Do you offer services to school districts that will ease my child’s transition back home?
Are there therapeutic recreation programs as well as an opportunity to go off the hospital grounds?
If your child is on a ventilator, how many ventilator-dependent children are treated at the facility?
May I tour the facility?
Do you have a list of former patients/families I can talk to?

Print the above list, add any additional questions you might have and bring it with you to your appointment for easy reference.

Explaining Spinal Cord Injury to Your Child

How you talk to your child about SCI depends on their age. If the child is very young, he or she may not fully understand the full scope of their injury, so taking it in small, age-appropriate steps is important. It is important to keep communicating and asking the child questions about how they feel, as children may not know how to fully express their worries and concerns. Leaving a child to guess what is going on can add to their stress and fear. Books for children with spinal cord injury can be a useful tool for explaining their injury and what to expect. One of the most important purposes of these books is to let a child know they aren’t alone. They can receive peer support from other children with SCI as well, both during rehabilitation and beyond. Finding a community of support for the child is as important as finding a community of support for the parents. SpinalCord.com has stories of hope, resources for people with SCI and their families, and a broad range of communities that may be helpful. They also provide a free guide for parents caring for a child with SCI. In addition, Enemeez® Thrive Community provides a safe space for any person with a disability, parents, caretakers and healthcare providers to ask questions, get support and find inspiration.

Emotional Support for Children and Parents

Helping your child recover emotionally is as important as helping your child recover physically. Children look to their parents to determine how things are going, so keeping a positive - but realistic - outlook is important not just for you, but for your child as well. Right off the bat, help your child nurture the belief that their injury doesn’t change who they are as a person or their value, and their injury doesn’t define who they are, either. Keeping the focus on what your child can do - rather than what your child can’t do - helps both you and your child keep a positive and hopeful outlook. For younger children, it’s important to remind them that you are there for them and love them no matter what. Older children, who are more aware of the scale and scope of their injury, may feel like a burden so continued reinforcement that they aren’t a burden and underscoring unconditional love is important. There are a number of organizations dedicated to helping caregivers for people with disabilities. Facing Disability has a comprehensive list of these organizations, and it’s a good place to start gathering information and resources for both you and your child.

Peer Support for Spinal Cord Injury

According to the National Spinal Cord Injury Association in Wheel:Life, “In a support group, members provide each other with various types of help for shared purposes. The help can take the form of providing and evaluating relevant information, relating personal experiences, listening to and accepting others’ experiences, educating and guiding, or for providing sympathetic understanding and establishing social networks.” For older children in particular, finding a peer support group is a great way to help them feel connected. You can find resources that search by state, provide lists, and online forums that may be helpful.

Don’t Forget Self-Care

Parenting a child with SCI takes a lot of work and dedication, and it can be easy to overlook your own needs. Remember, it’s important to care for yourself as well because you can’t be fully present for your child if your physical and mental health deteriorates. Self-care doesn’t mean bubble-baths and chocolate, it means making sure all of your basic needs are met, and that you are carving out time for yourself to rest and recharge. Healthy sleep hygiene, proper nutrition, and hydration are essential during difficult times. Finding a supportive community of people who understand what you’re going through is also important. This is unchartered waters for most parents, and connecting with others for support and advice is crucial. Lastly, be sure to take some time to yourself. Don’t be afraid to ask for help from family and friends with the care of your child, and make time to meet your physical and emotional needs. Take time to rest, go to the gym, connect with your support network, and simply step away for a bit to recharge. This isn’t selfish; it’s the best way you can help your child as well as yourself.