Today, Sunday April 17, is World Hemophilia Day. Y'all are getting a double feature post today, because I've been meaning to write these for the last couple of days, but time and work got away from me. (Ah, the dangers of working from home!)
Today's first post, The Importance of Being Kyle.
Because World Hemophilia Day fell on a weekend this year, Mrs. K and I corresponded to set up something for Kyle to do on Friday to teach his classmates about his disorder. I was under the impression he would be speaking to his class alone.
My son, my beautiful, brave, intelligent son, stood up in front of not one, not two, but FOUR kindergarten classes to talk about life with a hemophilic disorder and what his disorder is. He explained to his classmates and peers what Von Willebrand's Disease is, how it affects his life, and what he does to help himself with it.
This is what we call self-advocacy. And it is so, so, SO important at any age.
Encouraging a child with any form of medical issue to speak up and speak out can go a long way towards helping them with their self-esteem, confidence, and in getting the help they need. We as parents and caregivers can only do so much. We might know they're hurt, but we don't know how badly. We may know they need mental help, but we don't know what goes on in their heads.
And we can't always be there to stop the bullying.
People fear what they don't understand, and one way to deal with fear is anger and bullying. Help them understand, and you remove the fear and thus the response to that fear. By teaching his classmates why he bleeds and bruises so easily and why he can't do all the same things they can do, Kyle helped them understand him. He helped them see that he is just like them, just a little...quirky.
Are you a parent or caregiver? How do you help your loved one self-advocate? If you have chronic health problems, how do you self-advocate? How old were you when you started? Let us know!
Today's first post, The Importance of Being Kyle.
Because World Hemophilia Day fell on a weekend this year, Mrs. K and I corresponded to set up something for Kyle to do on Friday to teach his classmates about his disorder. I was under the impression he would be speaking to his class alone.
My son, my beautiful, brave, intelligent son, stood up in front of not one, not two, but FOUR kindergarten classes to talk about life with a hemophilic disorder and what his disorder is. He explained to his classmates and peers what Von Willebrand's Disease is, how it affects his life, and what he does to help himself with it.
This is what we call self-advocacy. And it is so, so, SO important at any age.
Encouraging a child with any form of medical issue to speak up and speak out can go a long way towards helping them with their self-esteem, confidence, and in getting the help they need. We as parents and caregivers can only do so much. We might know they're hurt, but we don't know how badly. We may know they need mental help, but we don't know what goes on in their heads.
And we can't always be there to stop the bullying.
People fear what they don't understand, and one way to deal with fear is anger and bullying. Help them understand, and you remove the fear and thus the response to that fear. By teaching his classmates why he bleeds and bruises so easily and why he can't do all the same things they can do, Kyle helped them understand him. He helped them see that he is just like them, just a little...quirky.
Are you a parent or caregiver? How do you help your loved one self-advocate? If you have chronic health problems, how do you self-advocate? How old were you when you started? Let us know!
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