From the initial phases of living with a SCI to finding ways to adjust daily routines as an adult is truly challenging. The new diagnosis of a SCI for a child can be just as or even more overwhelming. From a physical standpoint, a child’s systems is not fully developed and, therefore, has a higher potential paraplegia or a complete SCI. Also, parents are often left to navigate care and make crucial decisions for their child’s long term health all while remaining positive and encouraging their child who may be in a wheelchair now but doesn’t understand why.
But where does one begin to provide care for a child with a SCI? Which type of rehabilitation center should you use? How do you comfort a child when they feel alone? What will happen when they are able to return to school? Though there are many excellent resources concerning kids with new injuries, we turn to the Christopher and Dana Reeve Foundation to assist answering these questions. It is important to note that the child’s age will play a key role throughout the process.
The Initial Phase
When you are introduced to a new life with s SCI, it seems like many events happen all at once. To understand the initial phase, please read our “Spinal Cord Injury: The Initial Phase.” Though the article is based off of the immediate care of an adult with a SCI, the immediate care of a child is similar. This article will include a description of how the care of the spinal cord begins, a list the general of spinal cord injures, and what happens when surgery is an option. For further general information about a newly developed pediatric SCI, please visit the United Spinal Association and download their guide sheet.
Rehabilitation
Choosing the right rehabilitation facility and therapy is crucial as it provides the basis for successfully living with a SCI. According to The National Spinal Cord Injury Association, “The goal of rehabilitation is to help the child and family learn how to care for a body that now works differently, maintain a high level of wellbeing that avoids the resulting health difficulties of SCI…and help the child, once again, become a full member of the community” (United Spinal Association). This decision begins with researching rehabilitation centers that have the ability to take pediatric cases. The Commission on Accreditation of Rehabilitation Facilities (CARF) provides a list of facilities that are accredited and are equipped to meet the needs of young children. Most major hospital systems also have the ability to provide rehab for pediatric SCI cases.
Important questions to consider while interviewing and researching rehab centers include:
1. How many children/adolescents with spinal cord injuries or diseases does the facility admit and care for each year?
2. What is the staff to patient ratio?
3. Is the facility accredited and meet the professional standards to provide the proper care?
4. How far away is the facility from school and home?
5. Is an after-school or learning program so the child can continue their class work provided?
6. Does the facility provide training for the parent(s)?
7. Are there therapeutic programs for children on a ventilator?
8. Does the facility offer support for the child as well as family members?
9. Does the facility allow siblings and friends to visit?
10. Can a tour of the facility be arranged?
To learn more about choosing a rehabilitation routine, please read our “Spinal Cord: Rehabilitation Phase” article.
Life Outside of Therapy
Understanding the SCI
For a child, it can be hard to understand why they cannot move parts of their body like they could before or why they may not be able to participate in the same activities as their peers. This realization can be frustrating for a parent but possibly even more so for the child. To aid in the explanation, The Christopher & Dana Reeve Foundation suggest turning to books, videos, online tools, and events involving children with the same disabilities. The Reeve Foundation Paralysis Resource Center Library offers book and video rentals for children and adolescences to educate their SCI and other spinal cord injuries and diseases. Also, download the United Spinal Association’s tips to caring for a child and encouraging them throughout this process.
Education
Going back to school can be a scary thought to the child with a new SCI. From peer acceptance to figuring out how to navigate the busy hallways with crutches, there will be many challenges they will most likely face. The most important aspect to continuing their education will be communication. Parents should keep in constant contact with school officials and educators about their new learning needs, rehab schedule, transportation needs, and/or eating, bathroom, and medication needs. Before returning to school, there are a few notes to consider to ease the transition and encourage the child.
1. Set up an initial meeting with parents, teacher(s), principle, school nurse or secretary, guidance counselor, and the child. It might be helpful to continue these meetings, especially
throughout the first year of a newly developed SCI. An end of the year meeting is highly suggested to prepare for the next academic year.
2. Determine the type of vehicle needed to get to school. It may be easier for the parent or a caregiver to drive the child to and from school. A wheelchair accessible school bus might also be a
good option for transportation.
3. Functional school supplies might need to be purchased before returning to school. The Christopher & Dana Reeve Foundation suggests testing pencils, markers, scissors, etc. to make sure the child can have a good grip on the tools. It will also be important to think about the type of desk needed for the child, whether or not they need a more accessible locker, and an extra set of textbooks to aid the weight load of the child’s backpack.
4. At first, the child’s peers, athletic coaches, or club leaders might see the disability rather than the person. The SCI and people’s view towards it should not stop the child from being active
with school or community functions. It might be a good idea to get involved with an organization where the child can have a chance to be surrounded by others with a SCI. One great
example of an organization like this is the Paralympic Games. It could be encouraging to the child to see others like them and know they are not alone as well as being able to set goals to
compete in a Paralympic Sport Club.
For more information on Spinal Cord Injuries, we encourage you to use The Christopher & Dana Reeve Foundation Paralysis Resource Center. To learn how Dobson Healthcare can provide family support, staffing, or care for a loved on with a Spinal Cord Injury,
please call 866-866-8984.
The Reeve Foundation Paralysis Resource Center. Back-to-School. (n.d.). Retrieved January 26, 2016.
The Reeve Foundation Paralysis Resource Center. Books and Videos for Children and Teens. (n.d.). Retrieved January 26, 2016.
The Reeve Foundation Paralysis Resource Center. Kids with New Injury. (n.d.). Retrieved January 26, 2016.
United Spinal Association. Pediatric Spinal Cord Injury General Information. (n.d.). Retrieved January 26, 2016.