Coping with a Child’s Chronic Condition

Your child is 6 years old and you just found out that she is asthmatic. Your child is rushed off to the hospital where she stays for a few weeks and you find out how serious this condition really is. The diagnosis is this might be a chronic condition that she will suffer with for the rest of her life. You now realize your child is different and there are many things you have to do so your child doesn’t have serious flare-ups. This seems like the end of the world to you as a parent but there are many things you can do to become more aware of what a chronic illness really is. Chronic illness is life changing and affects the entire family. Here are 10 tips to help you and your family redefine the meaning of normal so you can all lead happier lives.

Education

Try to seek the information you need to understand the illness and look at the different treatment and care options. Write down the questions you want to ask your child’s doctor and search the internet and library for reliable sources. There are a number of age-appropriate children’s books related to chronic illnesses that will help explain the things you need to talk to your family about and you can explain to your child in simple terms.

Support

Get professional help from specialists, pediatricians, and therapists to have a care team in place for your child. No one wants sympathy but be grateful for all the acts of kindness from family, friends, teachers, and your community. You can also get the social help you need from support groups, national organizations, and local hospitals. These are the places you will meet the people that share your similar experiences. You will find out that you and your family are not alone.

It’s ok to admit that you don’t have all the answers and ask for help. When normal everyday challenges are amplified with the struggles of a child with a chronic illness, it’s easier to start feeling more isolated.

Planning

Create and follow a plan of action for the treatment and care of your child. Write up a medical summary and emergency care plan, and make decisions on legal issues, guardianship and transferring care. Set short-term, realistic goals. These diseases are very unpredictable and a parent should have a backup plan for everything. Remember children can get sick at school too and you might have to take more time off from work for appointments and treatments.

Communication

Always listen to your child, verbally and nonverbally, and help your child express their emotions. Always be open, honest, available and very supportive.

Advocacy

Don’t be afraid to advocate and stand up to doctors about your child’s medical condition. Keep in mind the maturity, child’s age, and development so you are able to judge if it’s appropriate to share certain kinds of information with your child. You can choose to involve the child in decision making and health management, and the social activities your child is up and ready to do. It’s always important to teach your child to manage their own condition and be their own advocate with their healthcare and education.

Management

Keep in perspective the elements of your life that you can control like your emotions and stress. Dismiss any unnecessary obligations and encourage your own self-management and independence so you can teach your child this wisdom and help them make their own decisions. It’s important that your child can make the decisions that they can control such as which arm he or she would like the nurse to use to take their blood pressure, or what date they would like their surgery on.

Parenting

Don’t forget to be a parent so maintain structure, discipline and the same daily family routines to keep your family feeling normal. Give proper praise and encouragement when deserved, without being overly protective.

Enjoyment

Find some time for yourself and make sure you add rest and relaxation into your schedule. As a parent, you have to have your own time to give the best care you can to your children.

• Help your child find things they enjoy by praising their strengths and encouraging them to try new things.
• Always participate in family activities and celebrate certain milestones for the whole family to enjoy.  You are all on the same journey but just happen to be sitting in different seats.
• Make sure to have a one on one time for your child with other children. You want the first priority to be that your child can enjoy their childhood like their friends, regardless of a chronic illness. Tell your child they are more than a diagnosis and introduce them to dancing, swimming, books and other healthy things a child their age would do.

Adapt

You are going to have to learn to make lifestyle changes and be patient about this. Change takes time and none of us like change. Try and live the best day of your life on a daily basis.

Evolve

Remember to keep checking on your child and assess their illness, as well as their emotional and social state of mind. Make sure they understand their illness and fill in missing information if they ask, clear up misunderstandings and add personal responsibilities as appropriate. Stay abreast of the latest treatments and care options, and learn how to recognize the changing appearance of your child, whether it be physical, emotional or social.

When you actively cope with your child’s illness, you can improve the quality of life within your family. This allows you to minimize negative impacts and the effects of the chronic condition. You will also be more prepared to have positive outcomes, such as a reduction in pain, a better recovery period from symptoms, improved quality of care and physical functions, and best of all great feelings of peace. Never say you can’t do something your child wants to try. There are many successful and famous people with chronic illnesses that have become extremely famous in our world during past history and present. Look at the future and you never know, armed with positive knowledge, your child can master anything within their means.