Saturday, June 7, 2014

Day 137, Hemophilia Foundation Annual SeaWorld Conference

Every June, The Hemophilia Foundation of Greater Florida hosts an annual conference at SeaWorld of Orlando. This year's topic was a good for parents with children who are hemophiliacs, and how to discipline children with bleeding disorders. I was a rambunctious little handful growing up as a child, always getting into trouble, getting injured and having to take a lot of factor.

Today's topic gave many key points on issues relating to behaviors, parental hovering as an overly protective parent, and methods to be a good parent with a child suffering with a bleeding disorder. The key thing I got out of today's message was the key point on using a child's bleeding disorder as a method of negative reinforcement. Many parents do this without thinking, or do it to be overly protective and the "helicopter parent" who does not let their child thrive, make mistakes and is raised with no baseline of failure and triumph. I thought all the parents there today needed to hear this message, and there were moments of quietness as the "helicopter parenting" aspect was being discussed on stage (and I loved every minute of it). I know often times, a child with a bleeding disorder is a red flag for parents, so their internal instincts kick in to become overly protective, administer all their shots and be there for their every bleed, stumble and moment of weakness. That's not a bad thing if the child is 8 years old, but if you're bleeder is in the later teens, it's time to cut the umbilical cord and let your child learn by their own mistakes, figure out real life problems for themselves and let them choose their own paths.

Closing note on the parenting aspect of a hemophiliac child, and talking from personal experience, let your child learn their disease, and it all starts with education. Getting your child to learn how to administer their factor at an early age, be social, and as much as you don't want it to happen it needs to, make mistakes and failures. Learning from failure is the only way a child will understand trial and error. My parents growing up, loved to hover, but as I grew up, allowed me freedom to venture out to movies at night with friends or dates, instead of demanding me to stay at home in fear of an accident or spontaneous bleed. This was, of course, when I was old enough to drive a car with a license. Too many parents cling to their hemophiliac child as a "disabled for life" status, and the parental instincts, though intended for good, unconsciously can be interpreted as bad. We are hemophiliacs, we are human; with arms, legs, feet, hands, a heart, a brain and a soul. We can be anything we want to be, but the motivation for that starts at home, and with the parent. Are you viewing your hemophiliac child with the mindset, "Mommy's gotta be there to give your shot when you get hurt, so it's better for you stay at home" mentality? That's not only selfish, but your limiting and depriving your child, teen or (gasp) adult son/daughter from fulfilling their potential in life, and changing the world. It all starts with a driven parent with passion in their eyes, pride aside, and grow in the mentality of thinking, "YOU ARE NOT YOUR DISEASE!"

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