Planning for the Future
As parents, we all think about the future of our children. This ranges from early development, school age, and teens to early adulthood to launch children into independent lives. For parents of children who have paralysis, the planning needs to be shaped a bit differently.
Self-care should be thought about as your individual child’s abilities and needs are developed. For instance, infants with neurogenic bladder and bowel issues will need intermittent catheterization and bowel programs rather than diapers. Toilet training occurs usually around ages two to three when a child gains control over the lower spinal cord nerves. For a child with paralysis, self-catheterization and bowel programs are usually taught before school entry although based on your child’s abilities, this can be earlier or later. Children that do not have the physical or developmental ability for toileting should be taught the steps so they know what should be done and how toileting processes are carried out for them.
There are many devices that can be purchased for self-feeding. With the help of an occupational therapist, you will be able to discern what equipment will be needed from built-up utensils and plate guards to apparatuses that assist with reducing gravity for self-feeding.
Skincare is another issue that should be a natural part of your child’s normal day. Include your child in performing skin checks. This promotes the habit. Help them find a change in pigmentation and what to do about it. Keeping your child’s skin healthy, without scars from skin breakdown will allow a better quality of life as an adult.
Join Our Movement
What started as an idea has become a national movement. With your support, we can influence policy and inspire lasting change.
Become an Advocate
Exercise is a process the body requires no matter what your age or health conditions. Early on, find activities that can be integrated into life based on physical ability, and desire. Look at the whole body as typically individuals exercise the parts of their body that they can move, ignoring those parts they cannot. Figure out ways to move the entire body, through play, games, and adaptive sports.
Mental wellness is an issue that should be thought about by everyone. Many families will involve counseling to maintain mental wellness and strategies to avoid mental challenges now and in the future. A therapist or counselor can help you prepare for life challenges. It may take some time to find the right person for your child. You may change as your child develops.
Navigating the world of healthcare is a challenge for everyone. Involvement at an age-appropriate level is critical to developing a knowledge base of the healthcare system. It is especially challenging when transitioning from pediatric to adult care. Much of the direction of pediatric care is based on the child’s needs with heavy emphasis on parental guidance. In the adult world, the individual takes responsibility for themselves. Before a visit to the pediatrician, discuss issues with your child. Let them present their concerns. As a parent or caregiver, you are there to help incorporate the healthcare provider’s directions into their daily routine.
The future is unpredictable for us all but even when your child is small or in the teen years, think about their future as adults. Noticing what your child enjoys doing is a good start to planning for their future career. If they enjoy sports or dancing, there are ways they can become involved in those activities as adults. Most people will not be sports stars or ballet dancers regardless of physical issues. However, they may decide to participate by breaking boundaries into mainline functions or like many individuals can work connecting interests such as organizing, designing, creating, or critiquing. They may opt to participate in the business end of things. Whatever your child’s interests are, be creative in thinking about how they can reach their goal.