Coping Through Education & Role Play
By: Wendie Chadd, National Director of Client Services | Feb, 2018 |
Coping with a chronic disorder or disease affects more than just the child who has been diagnosed, it impacts the entire family. At the moment of diagnosis, the entire family's focus, goals and priorities are forced into a place of re-evaluation.
Due to hemophilia being a genetic disorder that is present at birth, most children are diagnosed at a very early age. Even for families with a known genetic history, a new diagnosis causes a whirlwind of emotions and feelings of uncertainty.
Maintaining open and supportive communication has been an essential piece of my family's approach to living with a chronic disease. We have always been honest and open when discussing our son's Hemophilia with him, his sister, our family, friends, peers or even strangers that have asked. Listening to your children verbally and nonverbally, as well as helping them express their feelings will promote understanding and self-empowerment.
One opportunity for your child to share his feelings and knowledge about his Hemophilia is by allowing him to have his own "Factor Box." Braiden's Factor Box was stocked with gloves and his own set of infusion supplies. Braiden's best patients were Buzz and Woody from the movie Toy Story. We could hear Braiden talking to his patients as he would diagnose their joint bleed, then proceed to give them an infusion. He would explain the steps of the infusion process to his action figure and lovingly explained why they "needed a shot to make their ouwie feel better". Allowing Braiden the opportunity to teach his action figures about his hemophilia and his factor prepared and empowered him for sharing it and educating others as he got older.
Hemophilia Treatment Center Staff, books, online resources, advocacy organizations and support groups are all valuable resources that can provide educational materials, direction and support for all members of your family.
As always, reach out to your Hemophilia Treatment Center staff if you have any questions or concerns about your family's understanding or acceptance of their bleeding disorder. They are there to support you and your family as you face this chronic life condition as a family.
Pictured: Braiden at 3 years-old giving Woody an infusion.
The information provided on this website is not medical advice, nor is it intended to be a substitute for medical advice, diagnosis, and treatment. Always seek the advice of a physician or other qualified health provider with questions concerning a medical condition. Never disregard professional medical advice, or delay seeking it based on information provided on this website.
