Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
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 […]
Buying school supplies prior to the beginning of each school year is a rite of passage. Until my kids got to high school, I was more than happy to take advantage of the school supply kits offered by our school. Even so, each year, I still have to make multiple trips to the store for […]
As I walk through the aisles of our local office supply store, I can’t help but to get a tinge of sadness. The smell of fresh paper, pens, pencils, and crayons are enough for this former teacher to break down right there in the middle of Office Depot. Not that I am unhappy doing what […]
Through out the school year I have such a hard time balancing being the mom that every teacher or administrator loves to communicate with verses being the mom that everyone wants to run away from. I decided to sit down and write exactly what I wish I could say to every teacher or administrator Scarlett […]
Dear Addy, My son is starting kindergarten this fall and I’m concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]
Dear Addy, I’m preparing for my first year of college, which also means managing my hemophilia without my parents and local HTC. How do I make this a smooth transition? Is there anything I need to do before I get to school? Sincerely, Back to School Jitters ________________________________________________________________________________ Dear Jitters, Congratulations on this exciting transition. […]
Dear Addy, My daughter is about to start kindergarten. How should I go about telling the teachers and administrators at her school about her hemophilia? I want them to know how best to respond to any incidents without treating her like a Faberge egg. Signed, Off to School—Now What?! Dear Off to School, Sending a […]
Like all parents, I spend a few hours each August filling out back to school paperwork. It’s a tedious task. Once I finish all the required forms: emergency contact, acceptable technology use, and parent-teacher organization forms, I begin tackling the hemophilia forms. I update Thomas’s Individual Health Plan (IHP), and his “My Bleeding Disorder” document […]
Our Back to School toolkit was created for parents of children with a bleeding disorder. Check it out for examples of IHP, 504 & IEP plans, and a customizable PowerPoint presentation to help you advocate for your child: http://www.hemophiliafed.org/?p=17892 In a week my oldest son, Marques, will start middle school and I can’t help but to […]
Dear Addy, We moved to a new state for my job. What is the best way to explain my son’s hemophilia to the school? I am worried about how to handle teaching the school about his hemophilia. I want them to know how they can support and help him to prevent bleeds and I want […]
My son, Jackson, will enter kindergarten this fall. Some parents are happy for this new journey and some are dreading it; either they aren’t ready for their child to grow up or their child has a chronic illness and they are fearful of the unknown. I’m a mix of all of the above. Jackson is […]
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