Anywhere from 10-20 million children in the U.S. have some type of chronic illness or disability. Those conditions vary in how debilitating they are and how the children who deal with them go through their everyday lives.
But, as a parent, it can be an overwhelming feeling to hear that your child is sick or disabled. It’s every parent’s dream to have a healthy, happy child. While there is no reason your child still can’t have a good quality of life, it’s okay to take some time to let your emotions work themselves out. You might feel everything from denial and anger to sadness and worry as you go through what is essentially the grieving process.
Obviously, if your child has been diagnosed with a chronic illness or disability, you’re not alone in what you’re feeling. So, what can you do to make sure you’re meeting the needs of your child while taking care of yourself, as well?
What are the Difficulties After a Diagnosis?
The first thing that you might wonder after your child is diagnosed with an illness or disability is how it will impact their lives now and later. Even something as simple as going to school can change since there are some gaps to consider, including:
- A lack of communication between healthcare providers and educators.
- Lack of educational support.
- Not enough information available on certain conditions.
- Inadequate identification of how to teach children with special needs.
You may need to work with your child’s school district to put together an educational plan. In some cases, homeschooling or a private teacher may be the best option to keep them safe and comfortable. Children with special healthcare needs may be hospitalized more often than others, so having a flexible education plan that allows them to miss days without being punished is important.
At home, the difficulties might come from the things you need to change and adapt. Your child may need regular medical attention from a caregiver. You may need to make your living space more accessible. And, your own career plans may have to change if you decide to take care of your child instead of focusing on a job. These are all different situations for every family, but very real possibilities after a diagnosis.
What Your Child Needs
If you’re feeling scared and overwhelmed about a chronic illness or disability, imagine how your child is feeling. They might not fully grasp the weight of the situation. But, that uncertainty and not knowing can often be even scarier.
One of the best things you can do for your child is to listen to those concerns and fears. Make sure they know that all chronic conditions and disabilities aren’t the same. Some chronic illnesses, like GERD, are manageable and will allow your child to live a relatively normal life, even if they can be exhausting to keep up with.
If the illness or disability is serious, though, there are still things you can do to meet your child’s needs and ease their fears, including:
- Making a hospital feel as much like home as possible if they have an extended stay.
- Maintain schedules/routines.
- Keep things as normal as you can.
By letting your child live a normal life, as much as possible, they will learn not to be defined by their condition. Depending on their abilities, encourage them in anything from sports to the arts. Allow them to pursue their passions and hobbies. Children don’t often want to ‘stand out’ in negative ways, so by doing what you can to make their life as much like any other child’s as possible, you can help to ease their worries.
Finding Support for Yourself
Again, it’s never easy to receive a diagnosis that your child is sick or has a disability. It can be a stressful time for any parent. There is the actual diagnosis itself, to deal with, as well as the financial burdens that often come with treatment which can sometimes even lead to medical debt. So, it’s important to find ways to de-stress and to have a support system you can work with.
Your internal stressors can be anything from placing blame on yourself to worrying about the future for your child. Stress can lead to a variety of physical and emotional problems, so taking care of yourself is not only important for your own health but so that you will be able to continue to care for your child.
Don’t be afraid to reach out for support from others. Get help when you need it. Lean on family members, friends, support groups, caregivers, and even medical teams to help you through this time so you can practice self-care, stay educated, and provide your child with exactly what they need.
A chronic illness or disability doesn’t have to mean your child’s life is “ruined” somehow. Instead, it’s a way to learn how to adapt, make positive changes, and ensure that your child leads a fulfilling life.
Sam Bowman writes about families, wellness, and how the two merge. He enjoys getting to utilize the internet for the community without actually having to leave his house. In his spare time, he likes running, reading, and combining the two in a run to his local bookstore.
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