Fall 07 Factor Nine Newsletter

TOPICS IN HEMOPHILIA

- School In-service - Two parents perspectives

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The summer is over and school is here! We thought you would like to read about in-service at schools, two perspectives. If you would like to get in touch with these parents please send us an email and we will be happy to forward it to them.

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JOYCE H. - MICHIGAN

Ten years ago my twin boys started pre-school like so many other three-year-olds do, with one very large exception; one of my boys, Eshton, has Severe Hemophilia B with high inhibitor and anaphylaxis to FIX products. Ten years ago, and it remains the same today, the only factor product that he could receive was NovoSeven. Because NovoSeven wasn’t licensed at that point making the occurrence of a bleed extremely life threatening, it took weeks of frustrating phone calls before we could find an appropriate school willing to take Eshton. We made several visits to prepare the staff on how to treat this child with the rare bleeding disorder. I’ve learned a lot since then, but something that hasn’t changed is the need for in-servicing the staff and students when appropriate.Thankfully, by the time Esh was ready for first grade NovoSeven became available on the market and we were able to enroll the boys at our local public school. Our district had just hired a new elementary principal. He had been on the job about three weeks. He arrived at our first IEP (Individualized Education Plan) meeting at the special services department, dressed very professionally: shirt, tie, and suit jacket. Within the first fifteen minutes he had taken off his jacket and loosened his tie. By the end of the meeting he was wiping his brow with visible sweat rings under his arms. A year later, at our next IEP, I asked him about his obvious anxiety, (by then we’d seen each other many times as I traveled to the school to infuse Esh that first year). He said he was so scared when he left that first meeting that he went home and told his wife he wasn’t sure he wanted to keep the job anymore! He said, I feel sort of foolish now. I’m not sure why I was so overwhelmed by it, because by the time we finished the staff in-service and the year started, I knew we’d be all right. It just required some accommodations. He may not know why he was so rattled by Esh’s condition, but I believe it was because he lacked information. He feared the unknown. We’ve all experienced that, and if you’ve ever had to live with an inhibitor, you know that fear all too well.

Talking to our principal made me realize the commonality he and I shared. We had both been thrown into an area that neither of us had any prior knowledge of or interest in. We now found ourselves struggling to find out how to best handle the situation we were in. It also made me realize that educators want knowledge. (That may seem obvious, but there are a lot of people we have to deal with every day who really don’t want to know anything.) So I developed an in-service for schools to help the staff with the transition of caring for and educating someone with a bleeding disorder, and especially someone with an inhibitor.

When Esh started public school, I asked him if he wanted me to talk to the kids in his class. He said yes and I arranged with his teacher a time on the first day of school to talk with his class. I explained to the children how Esh’s blood doesn’t work exactly like theirs, but that in pretty much every other way he was just like them. We watched a video of Esh having his port accessed and I showed them the needle we use to poke his port. I also assured them that they couldn’t catch hemophilia; you have to be born with it. The children’s response was wonderful. They were interested and curious. Some of the children actually cried because they felt so bad that he had to be poked like that. Every year we would do this and every year the children would respond the same way.

By the time 5th grade rolled around, I asked Esh the standard question and his response was the same, minus the video. He felt he was too old to show it anymore, so I eliminated it in my first day of the year talk. When we got to the question and answer portion that day, Josh, a boy that had been in Esh’s class almost every year, raised his hand and wanted to know where the video was. It had been a part of their education on hemophilia for so long that when it was removed he felt like there was something missing!

This year we moved into our district’s Junior/Senior High School which meant a whole new in-service was necessary for the staff and there would be no first day talk. Because speaking with the principal did not bring the desired response, I made an appointment with the District Superintendent and explained to him why it was necessary for his entire staff, including office, cafeteria, janitorial, maintenance, and support staff, to be present at this in-service prior to the first day of school. After pointing out the liability issues the school could face, I gently reminded him that the federal law, as well as our own school board, requires that every child be provided a safe place to learn. He agreed and we scheduled a time for me to in-service the staff during their required Professional Development days prior to the beginning of school.

Thus, “Hemophilia 101 was created. I provided lunch and presented a power point as I spoke. Of course, due to the inhibitor and anaphylaxis issue we have, it took about two and a half hours to present the information and then answer their questions. I’ve learned the most productive way to get the staff involved has been to expose them to the problems that Esh’s transition into their building will bring and ask them to help problem solve the issues with me. The staff feels more empowered having some say in how we can work together not to disrupt the way their classes are run and still provide the accommodations that Esh requires.
The response has been overwhelming. Every person who was there and has seen me since has thanked me for the in-service. They all say the same thing, We heard he was coming and we weren’t sure what we were supposed to do with him. I feel so much better knowing what’s going on with him and what to do if he needs me. Its really not that big of a deal, is it?

In my humble opinion it all comes back down to knowledge. Truth will eliminate, and illuminate, fear. We as a community have faced fear before many times. We only have to think of Ryan White to know how much ignorance fuels fear and to remember how courage and love triumph. It is my job to continue to teach not only the professionals, but also my children, that knowledge is power.

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JILL L. - ILLINOIS

As I planned our yearly in-service a fancy word for “educational meeting“ with the boys teachers and staff I tried to look at things from the teacher’s perspective, a parent’s perspective and my kid’s point of view.My boys’ teachers have anywhere from 20-30 students in their classroom. Of those students, many have learning issues that require the teacher to make educational accommodations to each lesson. One or two may have behavioral issues that the teacher will have to monitor and report home on. There’s probably one with severe food allergies, one with asthma, a couple who wear glasses, one with diabetes, one allergic to bee stings, a couple with personal and family issues that the teacher may need to be documenting, a bully, a few underachievers, a few perfectionists. I think you get the idea.

My goal is to make the teacher’s life easier, not more complicated. I want her to know that I do not expect her to give my child special treatment. I don’t expect her to diagnose bleeds or guess if my son is faking a bleed to get out of dodge ball. In fact, I would prefer that the teacher have very little to do with my son’s hemophilia. Because of this, I emphasize over and over that the teacher should call me if she/he has questions or concerns.

Now that the boys are older and beginning to manage their own care, I am also insisting that the teachers give the boys responsibilities in managing their care. I encourage the teachers, school nurse, principal, and secretary to have the boys themselves call me. I would like to speak to the boys myself to assess the situation. It sure is easier to talk directly to Nat and ask him is it a bad bonk or will ice be ok? This isn’t a question that I want the teacher asking my son. I know my kids; I can read a lot into their answers. There’s a difference between a firm No, I’m fine and well, no, I think I’m ok. If they seem wishy-washy or uncertain on the phone, I will take that as a sign that they need an infusion. I can also take the time to remind them when they have had their last infusion. If he’s tripped up the stairs, I can say to him, you had an infusion yesterday morning; do I need to bring your supplies over or can you wait?

These aren’t conversations that school staff can or should have with my kids. But this is the type of internal dialog they need to have when they have an injury. I’m hoping that by having this dialog WITH them, it will help them better handle the situations when they are on their own.

When we have our in-service, we do a mini-lesson with the school about Hemophilia 101. I let the boys do this now; they are old enough and had better be able to tell someone else what hemophilia is! We explain that any emergency with the boys is to be handled just the same as an emergency with a child who doesn’t have a bleeding disorder: call 911, apply ice, keep them immobile, apply pressure; whatever the emergency calls for, that’s what should be done. Again, I let the boys lead this discussion as I add details along the way. This gives the boys a great sense of pride and ownership and also lets the school staff know that the boys are assertive and in control of their own hemophilia.

The last thing I emphasize is to LISTEN TO MY CHILD. I explain that the boys have very good body awareness. We tell them that if the boys are having a bleed, it might not be noticeable to anyone else. The boys know if they have been injured; if they say that something doesn’t feel right, believe them. I have told school staff that, so far, neither of the boys has faked a bleed. I tell them that I know it probably will happen someday, but I don’t what the school to make that decision. If the child really is having a bleed and school thinks they are faking, really dangerous things can happen. On the other hand, if one of the boys FAKES a bleed and my husband and I find out? More really dangerous things will happen to them when they get home!

Our approach with the school has always been to be open and honest. As the boys have advanced through each grade, we give them more responsibility. Just as we want the boys to manage their hemophilia here at home by doing their own infusions, we want them to transition to managing their hemophilia while they are away from home.

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