Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I’ve done my due diligence by asking for his teachers’ names, ensured his schedule doesn’t have him running all over campus, and asking for a meeting with the powers that be to teach them about hemophilia. I have not done any of that this year.
It’s not because I’ve become complacent about back to school issues. I still worry that there may be hiccups. But I know that in the previous nine years of his school career, we’ve built an incredibly strong individual education plan (IEP) and developed positive relationships with school staff. Those years where maybe things didn’t go as smoothly as we would have liked are paying dividends now as he enters the final few years of his secondary education.
I also know that my husband and I have tried to provide Thomas with a solid foundation to build himself into a strong, independent adult who can self-advocate. Last year when he hit a minor speed bump at school and didn’t receive two lockers, I wasn’t the one that spoke with the security office to rectify the situation. Thomas did. We’ve involved him in meetings with school staff since the time he was in elementary school, so he’s well aware of what his rights and responsibilities are, and he is able to step up when needed.
Do I still worry about sending my child with hemophilia back to school like I did when he was in kindergarten? Absolutely. But I also know that part of his education has been setting him up to function autonomously.
Sonji lives with her husband, Nathan, and three children Nora (16), Thomas, (15), & Natalie (12), in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.
