Kids will be kids… or so the saying goes. Each child has a dream of what they may want to be in life - an astronaut, a cowgirl or perhaps a superhero. Often when facing new and sometimes serious medical circumstances, children hold on to those childhood ambitions; but the everyday life they knew takes on a new norm. Parents also face many adjustments within the family unit when a child is diagnosed with a serious or chronic medical condition. Parenting a child with medical needs can complicate the parental role.

Here are some helpful tips to provide support, while maintaining your child’s individuality; creating opportunity to learn and play; as well as meeting their medical needs:

  1. Keep their world positive. No matter the diagnosis, the normalcy of life’s routine takes on a new meaning, and you’re here to guide them through each day. Continue as much of your routine as possible. At the same time, shower them with support and encouragement in the activities they do. Be sure to involve siblings and extended family. The support of loved ones can be the difference between pushing beyond a boundary and potentially remaining within it.
  2. Alter their daily living activities into a game, and help them find excitement and responsibility in their everyday tasks. If something is particularly difficult for them, teach them to practice, and encourage progress with periodic rewards for success. Be patient, and encourage them to participate in choices regarding their care when possible.
  3. Allow them to still be a child: No matter the illness or disability, childhood only occurs once. Small things can bring a light-hearted touch to difficult days. Draw cartoons together, imagine far off worlds, take a stroll down the deck of pirate ship as opposed to the hallway of hospital. Imagination can make all the difference.  Remember, a child’s job is to play.
  4. Embrace the challenge of adolescence: Your teenager will still go through all the struggles and intricacies of being an adolescent combined with a new medical diagnosis. Remind yourself of what this was like for you without being sick. Respect their privacy, but also encourage autonomy, choices in care, and expression through music, art, and social media. Look for adolescent support networks.
  5. Be their advocate. Children do not officially have a legal voice in their medical decisions until their eighteenth birthday. When deciding treatments, be sure to include their opinion and update them on the feedback and recommendations from their physicians. This aids in their awareness, so that they may continue to be included in the conversation of their own health.

In addition to the tips provided, there is a large aspect of parent caregiving that can greatly influence the support and care for your child - you. Take time each day to care for your physical and mental health. If you don’t maintain your well-being, or become riddled with stress, their foundation will only suffer. Parent caregiving is a long and, at times, daunting task. However, giving your own time and effort for the betterment of another is truly the ultimate act of love. Ensure that while taking care of your child, you have family and friends that are present in your life to continue caring for you during this journey.

For additional support with your pediatric care, visit Johns Hopkins Pediatrics at Home for contact information and a list of provided services.

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