Looking at the Big Picture
If you are new to pediatric paralysis, you may be wondering if you have done everything possible for your child. If you are a long-term member of the pediatric community, it is always good to take a quick review to ensure you have all aspects covered. Here are some broad thoughts to help make sure your child is getting the best benefits of care now and in the future.
Central Nervous System Issues
The brain and spine are rapidly developing in children. Nervous system adaptations continue as adults but at a much slower rate. The upside is that stimulation of the central nervous system (CNS) can trigger more connections and functions in a child. Be sure to look for opportunities to help your child’s nervous system progress as much as possible through movement, treatments, and upcoming research.
Medical treatment decisions fall to the parent of a younger child. Be sure you are providing the care needed to avoid health issues in later years. This includes performing personal care such as bowel, bladder, and skincare. Not providing these basic practices can lead to an overstretched bowel that no longer functions well, bladder complications that can destroy the kidneys, or scars from pressure injury that leaves skin more fragile as an adult.
Involve your child in the care you are providing even starting at the infant level with verbal descriptions. Allow the older child to participate as they are able. Knowing how to care for their own body is normal. This will help them transition to adulthood.
Development
Children’s bodies and minds are constantly developing. Although paralysis may lead to adaptions in developmental milestones, make every effort to ensure they are progressing at a rate that is appropriate for them. Some milestones may be reached later or include the use of adaptive equipment or techniques.
As parents, we want to provide as much as we can for our children. Sometimes it can be hard to allow them to make their own decisions when appropriate. Guiding children is the role of the parent but do so considering the uniqueness of your child. Utilize resources to gain as much independence in physical care as possible. For example, parents do not feed or toilet adult children. If your child has the ability, help them gain independence in these skills. Their adaptions are their normal.
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Emotional and Mental Well-Being
Everyone has challenges with different aspects of parenting. Your child may be doing well when something occurs that can lead to trials for your child and/or the family. It is good to have resources to assist with mental well-being so that you have the ability to meet these challenges before they become a crisis. Working with a mental health therapist can assist with developing ways to deal with challenging situations.
Very young children will find their way of performing self-care to be normal, the other children are doing it wrong. Teens may be self-conscious about how they perform personal care. Helping a child understand that everyone is different, everyone has challenges in life, and everyone responds differently to their challenges is important in maintaining mental well-being.
Ask Your Child’s Opinions
As parents, we can be so busy with organizing the day, weeks, and years, that sometimes we forget to check in with the dreams and desires of our children. Find out what your child’s goals are so you can use your adult processing abilities to assist them with reaching their goals.
Work with individuals at your child’s therapy or school to help adapt their desires into reality. This might include finding an adapted program or creating a space in an existing program to meet your child’s needs. As a parent, advocacy becomes a natural part of your life.
You will find more topics unique to your child. Starting with and reviewing these points is a beginning.