When we think of chronic health conditions, we typically think of conditions that greatly affect an adult’s life and ability to work. However, chronic health issues also affect roughly25% of children and adolescents across the United States.
Chronic health issues and conditions are commonly defined as those that last over 12 months and create limitations on usual lifestyle activity. From asthma to epilepsy, cerebral palsy to cystic fibrosis, children are unfortunately not immune to chronic health issues.
As a parent, guardian or adult loved one to a child with chronic health issues, it can be hard to know when to step in to help directly or when to offer support in more indirect ways. Today, we’re exploring all kinds of ways to help a child cope with chronic health issues.
Chronic Health Issues and Children
What are some of the most common ways in which chronic health issues affect children? Many children with these conditions have limited physical abilities, discomfort, and pain. In many severe cases, children may be unable to participate in school or peer activities common for others their age.
The exact condition that your child has, alongside their age and temperament, will greatly determine how you can best support them during their health journey. Younger children may be unaware that their situation is different from their peers, but may suffer from the inability to form relationships with others due to stamina or proximity when seeking healthcare.
Older children may struggle with achieving independence, which can result in overdependence on parents or caregivers or simple anger over a lack of autonomy.
School Accommodations for Children with Chronic Health Issues
Teachers and administrators and smart and essential. However, they may not be educated on your child’s specific chronic health condition or potential accommodations they need. Similarly, the school nurse may not be an expert in that area, either.
One of the best ways to help your child cope with their chronic health condition(s) is to ensure that they have a support system both at home and at school. Speak with and/or provide learning materials for your child’s direct teachers and a school nurse.
There are many foundations and organizations, such as the American Diabetes Association, that have readily available electronic resources. These can help educate your child’s school staff on your child’s condition, and ensure that they can be caring and stay well-equipped in cases of emergency.
Depending on the severity and rareness of your child’s condition, you might want to consider asking your kid’s specialized doctor to send a formal letter to the school. This can help add weight to your words and emphasize that your child needs special consideration to truly learn and prosper.
Finally, have a conversation with your child about what to expect at school. If there are specific testing accommodations in place, let them know which ones they are entitled to. Emphasize that their teachers and nurses know about their condition so that they can help care and for them at school. Let them know that you’ll always have their back. Ask them to tell you if anything happens at school that bothers them. While uncooperative teachers are rare, you’ll want your child to let you know if a teacher or school figure starts speaking rudely about their condition.
Seeking Help for Chronic Health Issues in Children
When you have a child with chronic health issues, knowing when to take charge of their doctor appointments and treatments and when to give them the freedom to do so alone is difficult. Depending on the age of your child, you might have to take complete control over managing their treatments and schedule.
But in most cases, it’s good to strike the best balance you can between doing things for them vs. alongside them. Give them input on their health when possible, such as choosing to see a doctor on Mondays instead of Fridays. A young child under the age of ten might need choices to select from, while a 16-year-old might be able to organize almost everything for their healthcare independently.
Chronic health issues are defined as such because they last for 1 year or more. Dealing with these is tiring, anxiety-inducing, and unfair. But the severity of chronic health issues also makes it necessary for your child to learn about their condition quickly.
Take the time to explain to the best of your ability what their condition is, and the treatment plan(s) involved. Teach them how to express themselves to their doctor, or even how to fill a prescription. And when they are too tired or burnt out to learn or do things for themselves, do it for them and shelf the lesson for a better day.
Balancing teaching moments with directly accomplishing tasks for your child is key when your child lives with chronic health issues.
Coping with Change Due to Chronic Health Issues
Your child may be exposed to many unexpected changes due to their chronic health issues. Last-minute doctor’s appointments and difficult days with unfortunate timing can have your kid missing out on the everyday joys of being a kid.
While we can’t take away all of the complications, we can do our best to help educate our children on how to best deal with change and transitions healthily. Here at Mighty + Bright, we have our very ownbook and calendar kit designed to help kids cope with changes and transitions.
With the purpose of relieving anxiety and confusion, our book is ideal for explaining the ins and outs of schedules that change or are prone to change at the drop of a hat. Paired with our calendar with reusable stickers, this kit is a great way to explain changes to young ones.
It will also give them the gift of independence and control over when and how frequently they revisit their own schedule and learning. It can be hard to take in lessons after one talk with a parent, but a book can give your child structure even when you are unable to.
Encouraging Socializing with Other Kids
Kids need to be kids! And while yours may have a chronic health issue, that doesn’t mean that they don’t still need to have fun and connect with others their age. The activities they do and how often they do them might differ depending on their condition.
But, there are special needs summer camps and adaptive sports programs that can help. It can be easy to become socially isolated when you’re sick. Unlike a common cold that should pass in a few days or a week, a chronic health issue can affect your child’s stamina and ability long-term.
And while treatments and family might always come first, so does your child’s mental health and social happiness. Ask your kid’s school if they have any particularly accessible clubs or classes, or consider seeking a specialized inclusive camp during the summer.
If a plethora of in-person hangouts are a concern, consider helping your child set up a virtual movie night with their friends or even playing online games depending on their age. Of course, you’ll have to check on each game’s security and chat settings if your child will be playing with strangers instead of friends. Still, socializing and cooperative games are a fundamental part of a child’s upbringing and happiness.
Rewards and Happiness
Speaking of childhood happiness, it can be extremely hard for children with chronic health issues to be both mature at such young ages and happy. Sick children often grow up faster out of necessity. Kids can end up becoming more mature after scheduling their own doctor’s appointments and skipping out on friend dates for treatments.
This has some pros and cons. On the plus side, it’s important to know which tasks your chronically ill child is capable of doing on their own. On the other hand, it is sad to see a child that should be able to live carefree, living full of fear and sadness because of a condition outside of their control.
One of the best ways to therefore help your child cope with chronic health issues is to identify activities, gifts, and rewards that can be given when they’re doing an especially great job at managing their schedule or simply need a pick-me-up. Depending on the chronic illness, some things will be more possible than others.
For example, children with asthma probably shouldn’t be rewarded with a long hike, even if they do love the great outdoors. Instead, schedule a park day that offers the same amount of sun without the stamina.
Simply watching or rewatching your child’s favorite show on the family TV can be a reward, as can a trip to the bookstore for an addition to their favorite collection. Don’t forget that your child is a child, and deserves carefree happiness, too. It can be harder to gift this to children with health complications, but just as rewarding.
Lending a Sympathetic Ear and Self-Care
Loneliness can be painful. This is especially true when piled on top of physical, mental, and emotional pain already standing from chronic health issues. When helping your child cope with chronic issues, it’s important to offer them your personal time and sympathetic ear whenever possible.
Set up a regular check-in time with your child, preferably at least once a week or more if they are starting discussions with you about their feelings or day. Help your children identify their feelings by offering adjectives ranging from sad to mad, annoyed to frustrated, and happy or thankful.
Doing so can help your child better understand themselves and even have betterconflict resolution skills.Perhaps most importantly, it can also help your child properly communicate when getting treatment for their chronic health issues. It can also offer them structure and stability by letting them easily identify “good” vs. “bad” health days.
While no child should have to live with chronic health issues, having set expectations and a basic understanding of what their day will look like with this condition can offer comfort and overall improve your child’s quality of life.
Managing Parental Stress and Emotions
Finally, taking care of yourself can be the best thing you can do for a child with chronic health issues. Being well-rested, healthy, and ready to tackle the day can mean the world to your child who might have a few more bad days than you.
That doesn’t mean that self-care is easy or often achievable. With bills to pay, work to complete, and eight hours of sleep to chase, it’s nearly impossible to do it all every single day. There’s no shame in asking for help for yourself so that you can ultimately help your child more, too.
Reach out to friends and family to lend you an empathetic ear, a babysitting day, or even a meal. Consider seeking a therapist to discuss your own feelings about your child’s health issues. All of these things can help alleviate the weight on your shoulders and allow you to take care of your child more effectively.
Stress is also transferable. Seeing a physically stressed and unhappy parent can be unsettling for a child, especially if this happens seemingly as a result of a child’s health condition. Additionally, we are more likely to accidentally burden our children with our own worries and concerns if we don’t have a strong support system for ourselves.
Reframe your own mental health as a needed health boost for your child and you’ll find that you’re better equipped to help them cope with chronic health issues.
Helping a Child Cope With Chronic Health Issues
Caring for a child with chronic health issues is a full-time job. From a medical treatment standpoint alone, organizing or helping to organize doctor’s appointments, treatments and bills are challenging and horrifying at the same time.
No matter how you try to help your child cope with a chronic health issue, do so with compassion and understanding. Don’t be afraid to rely on resources to help explain changes to your kid, and don’t forget to ask your support network for aid for yourself, too.
Here at Mighty + Bright, we believe in fighting for our kids against our darkest times. Check out the rest of my website forage-appropriate kids’ books on difficult topics and more articles to help you and your family pull through anything.