Caring for any child brings with it a mixture of joy, trepidation, and stress, but when that child has a chronic illness, disorder, or disability, the trepidation and stress threatens to eliminate the joy. Fortunately, there are ways to avoid this and enjoy your child even during difficult times. Here are four basic tips to help you and your loved ones care for a child with a chronic condition.
Your Child is Still Your Child
No matter what his or her age, a chronic illness or disability can make a kid feel as if he or she has suddenly become only a diagnosis. Suddenly, surrounding people may treat him or her differently and focus only on weaknesses or the inability to do certain things. You can help by focusing on your child's strengths and abilities. Highlight these as much as possible by giving authentic praise when your child does something well. Offer to do activities that focus on your child's hobbies and strengths; for example, if your child loves sports, go to games together or do low-impact activities together. Encourage your child in his or her medical journey, but don't make a big fuss about his "being brave," as that may send the message that he cannot express his real feelings. Assure your child that all her emotions are okay and you are there to listen.
Know Your Medical Team and Hospital
No matter what illness or disability your child has, your medical team and local hospital can be invaluable resources. Make sure you have a physician that you know and trust who is well-versed in your child's diagnosis, and don't be afraid to request second opinions. Take advantage of any special programs your hospital has.
As soon as you have a diagnosis for your child, educate yourself on what it means and how you can help the doctors do their jobs. Every diagnosis is different, and every child won't show all the symptoms under a certain umbrella. Familiarize yourself with the symptoms and behavior your child does exhibit and learn what treatments and interventions work best for you and your family. Ultimately, no doctor, therapist, or other expert knows your child better than you, and you may come up with solutions that positively supplement the medical team's recommendations. For example, if the disorder or illness hampers your child's ability to communicate, you may be one of the primary people who is "fluent" in his or her specific forms of communication.
For some families, the diagnosis of a chronic condition is terminal, so staying optimistic may seem counter-intuitive. But for just as many others, the diagnosis is not terminal. Whether it is or not, focus on giving your child the fullest and best life possible, stay focused on what he or she most wants and needs. Take care of yourself so you can better care for your child, and focus on making yourself happy as well. Your child will take his or her cue from you; if you stay strong, he or she will, too.
Having a child with a chronic condition can be draining and scary. Some illnesses might even be terminal. But with tips like these, you can give your child the fullest life possible and be of great help to both your family and the medical team. This will result in a calmer, more grounded family and child.