All parents worry about providing the best quality of life possible for their child. That consists of a blend of providing opportunities while allowing the child to grow and develop their own sense of self. It is an ongoing assessment of thinking about when to intervene and when to step back. It is no different for parents of children with health concerns, although it may look and feel different from how you might have imagined life in the parental role. Life never progresses in the way we imagined. There is always a surprise, a twist, a turn of events for which realignment and new thinking evolves.

We just recently completed the Reeve Summit 2021. There were presentations by young people just launching in adult life. Like many of the individuals I speak with who had neurological changes in their younger lives, young people always praise their parents for creating a world where they could succeed and thrive. This does not mean that parents offered them every opportunity but that they cared for, nurtured, and provided love for their child. The keys of successful parenting make for successful adults.

It is typically the parents or guardians who provide or guide healthcare for individuals who are dealing with life-altering changes as children or adolescents. This process of demonstrating activities needed for caring for your body is a foundation for a quality of life. Knowing when to provide assistance and when to step out is art for parents.

Often, I hear parents wonder if they did the right things, offered the right amount of assistance, and provided enough opportunities. The answer is yes, you do and you did. As parents of any child, we can provide care, counsel, and love, but we cannot ‘make’ our children be successful. For that, they must take the initiative.

There is extensive research that has been completed about quality of adult life with neurological change in childhood. This can be from medical issues or trauma. The answer is a resounding yes; children with neurological changes in childhood grow up to be successful adults. It does not matter if you drove 100 miles one way to get your child to an opportunity or understood every word of the individual education plan or obtained specialized equipment. All these actions are great and should not be minimized, but those parents who worked within their own neighborhoods, within modest means and within their own abilities have the same productive outcomes for their children.

There are some ideas about what you can do to help your child have a good quality of life as an adult. For all children, listening, providing understanding, support and love are the basics. For children with chronic conditions, there are some additional suggestions.

Encourage independence. It is very difficult to watch your child struggle. Let your child find their abilities. When found, let them move forward with the things they can do. It is so much easier to do things for any child. Letting a two-year-old dress themselves can be a slow process. Allow as much independence as possible before stepping in.

Parents often get into a trap of doing everything for their children because of challenges. I see many students ready to go to college but cannot because they have never performed their own bowel program. It even occurs with married adults who have their mom next door to provide these care services. Toileting is something that people do on their own, if possible, so lead your child in that direction by setting up a stepwise program for independence.

Become an expert about everything concerning your child’s individual health needs. You will want to learn more about their condition as an adult but teach your child about their needs on their level. You can advance their knowledge as you advance your own. This year, you might learn about the diagnosis and how to provide basic care. As the years go by, you will learn more. Your child might not be developmentally ready to learn what you know, but you can institute new actions, telling your child what and why you are doing something as they are able to understand the process.

Eventually, you will learn to troubleshoot situations such as a fever might mean a urinary tract infection (UTI) or ear infection, depending on your child’s history. You will become more comfortable with your child’s caregivers and teachers. You will learn how to navigate the IEP (Individual Education Plan) and how to advocate for your child. You will learn how to approach other parents and children for inclusion. Build your group of supporters and colleagues.

Keep up with the latest literature about the health condition of concern. Utilize organizations that are reputable resources for the latest information and mental health wellbeing. Include healthcare professionals as allies in your quest for quality of life.

Strengthen both your own and your child’s mental wellbeing. Part of your healthcare team should include mental health advisors. You might choose an individual counselor, family counselor, clergy or others who will be strong listeners. Also, support yourself and your child with skills that can be used in challenging situations before they spiral.

Many individuals feel that seeking mental health is a stigma. However, it takes strength to realize that life does not always flow perfectly. A mental health professional can help you gain insight into situations to be better able to meet them with a positive outcome for you and your child.

Provide access to education for your child. This is a right for children in the United States. You might have the option of having your child in a general classroom or in an adapted classroom, depending on their needs. Education is a gift that you can provide your child for success in their adulthood.

Education allows a person to obtain employment. Consider your child’s abilities to help guide them into an adult role where they will flourish. Look at their talents, skills, and preferences for adult living. If being a football player is not a realistic goal, as it is not for most individuals, can they be an announcer, commentator, or statistician? Find something your child, especially in adolescence, likes and work together to find or create a job in that field.

Inspire play and socialization. Younger children learn by playing. Adolescents learn from their peers (sometimes things we do not wish they knew!) Play stimulates the imagination. It creates opportunities for problem-solving in a nonthreatening environment. Playing with others with differing abilities can inspire and motivate your child. Socialization by adolescence with their peers is another form of education where they work together to learn about experiences and how the world works. It offers them time to strategize about how to get into a building or car without you being present.

Interactions with others in a safe environment can help prepare for the future in a world where there are varieties of personalities, such as the workplace. Learning that some people can be self-centered or gracious helps navigate life as an adult. It also helps develop coping skills if you are not chosen for a particular activity or promotion.

Confront disease progression and complications. For some children, disease progression will occur due to the medical condition. Disease progression does not have to affect quality of life. An upfront attitude will help your child navigate changes in their healthcare status. Instead of waiting for changes to occur, discuss what you should be doing to avoid or delay progression or complications. This does not need to be a dark cloud looming over life but rather a matter-of-fact approach when needed.

Knowing the course of a disease can help plan for needs to continue living at the same level. If a wheelchair is needed later for mobility, look at it as a method to continue mobility. If a complication occurs, such as a pressure injury, for example, be prepared to know the signs so you can catch it early rather than having to make a major lifestyle change later.

Join a support group. As a parent or parents, you might feel alone in your situation. It is good to ban with parents of other children with and without health concerns. Parental communication is where most of the ins and outs of school are passed along.

A support group with others can be helpful and other parents who have gone through the educational process, summer activities, socialization, and independence issues. People who have been in your shoes have a great deal of knowledge about what works and what does not. You will also find that you can support others with your knowledge and experiences. You will build your own friendships.

The following are some additional links to find out more about quality of life and chronic health issues in children. Nurse Linda

NCBI Article: Quality of life is better at younger age

PubMed: Adult quality of life with sci in childhood

PubMed: Employment was stable as adults with SCI onset in childhood

NCBI Article: Quality of life between pediatric and adult-onset

For these medical articles, copy/paste the PMID: with numbers. You will find the summary.

Comparison of disability and quality of life between patients with pediatric and adult-onset paraplegia. Duzgun Celik H, Cagliyan Turk A, Sahin F, Yilmaz F, Kuran B. J Spinal Cord Med. 2018 Nov;41(6):645-652. doi: 10.1080/10790268.2016.1275447. Epub 2017 Jan 19. PMID: 28102106 Free PMC article.

Relationship between neurological injury and patterns of upright mobility in children with spinal cord injury. Chafetz RS, Gaughan JP, Calhoun C, Schottler J, Vogel LC, Betz R, Mulcahey MJ. Top Spinal Cord Inj Rehabil. 2013 Winter;19(1):31-41. doi: 10.1310/sci1901-31. PMID: 23678283 Free PMC article.

The associations between life satisfaction and health-related quality of life, chronic illness, and health behaviors among U.S. community-dwelling adults. Strine TW, Chapman DP, Balluz LS, Moriarty DG, Mokdad AH. J Community Health. 2008 Feb;33(1):40-50. doi: 10.1007/s10900-007-9066-4. PMID: 18080207

Ambulation in children and youth with spinal cord injuries. Vogel LC, Mendoza MM, Schottler JC, Chlan KM, Anderson CJ. J Spinal Cord Med. 2007;30 Suppl 1(Suppl 1): S158-64. doi: 10.1080/10790268.2007.11754595. PMID: 17874702 Free PMC article.

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.