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 think back about our journey through school so far.
I remember when I first put him in daycare/pre-school, he was almost 6 months old. I was so nervous to have anyone else take care of him. He was my first child with hemophilia and I was worried that he could have a spontaneous bleed at any time. I had taken an extended four month maternity leave to be home with him, but I needed to go back to work. Luckily, my sister was in her last trimester with her daughter and she was able to take care of him for an additional month (I like to think it was good practice and preparation for her). When it was time to send him to daycare, I chose a daycare/pre-school that was two minutes from my parents, so that my hemophilia “expert”, my Dad, could get to him in case of an emergency. A nurse from our home care company also went to the daycare/pre-school and gave the staff a hemophilia 101 lesson, and taught them what things to look for and what to do in an emergency.
When he started walking he wore his helmet and knee pads every day to school. (Marques first major bleed was a head bleed, so we were stern about him wearing his helmet). His teacher even thought of putting a wet paper towel in his helmet when they were outside playing in the summer to help him stay cool. His first helmet was one of those blue, three-inch thick plastic/rubbery material helmets with the rainbow strap that clip under the chin. By the time he was two years old, I was leaving his factor in the school refrigerator for his nurse to come three days a week for his prophy treatments. Blessed, we made it through daycare/pre-school with no emergency issues.
At the start of elementary school we stopped using the kneepads, but I still wanted Marques to wear a helmet every day, all day at school. By this time his helmet was the newer, thinner, blue material. More confident in my advocacy skills, I met with the school nurse and teacher myself and talked to them about Marques having hemophilia and what to do in case of an emergency and left them with a hemophilia 101 packet.
By the time Marques reached 3rd grade, I only required him to wear his helmet during recess and gym class. I knew Marques was playing football at lunch with his friends, so I was still concerned about an accident. Toward the end of fourth grade, he came home and asked if he could retire the helmet. I had already decided that he wouldn’t have to wear it in 5th grade, but it was still hard to give him the okay. I had to trust him and trust that the school would respond correctly to any emergencies.
I have to say his elementary school nurse was very good at calling me anytime Marques came to her office about any minor playground injuries. We were lucky enough to have the same school nurse all five years! Again, we were blessed to never have an emergency.
Now it’s a week before my son starts middle school and he doesn’t have one primary teacher, but now has several teachers throughout the day. I’m not looking forward to talking to six different teachers about him having hemophilia. To be honest, I don’t want to tell any of his teachers besides his school nurse. I know we’ve been lucky — I make sure he takes his factor when needed and I can’t remember the last time he had a breakthrough bleed; if he’s ever had one. He has not missed school due to hemophilia since he had his port taken out three years ago. (Excuse me while I knock on every piece of wood in the house).
But Marques and I talked about whether we should tell all his teachers about his hemophilia and he’s the one that brought me back to reality and said, “Mom, if you don’t tell them they may not let me go to the nurse if something does happen. They will say, ‘Marques you are okay,’ if I hit my head.” The reality hit me and I know that I don’t have the option to not mention it.
So, as much as I would like to think that hemophilia is a non-factor in our life, it quickly becomes a factor in an emergency and I need to make sure everyone at school understands what steps need to be taken. I have to view it like car insurance; I don’t expect to have an accident but in case I do I’m covered.
I am so grateful and I will pray that our blessings continue throughout middle school. Hopefully, he will even try out for the basketball and/or track team and remain bleed free!
Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (15), Marques (11), Laithan and Layla (4.)
*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.