See the “504 Accommodation Plan” sidebar.
Like most parents, Joyce Hewitt had a back-to-school routine for her children.
Until recently, that routine involved more than buying backpacks and filling out emergency contact forms. Joyce and her son Eshton, who has severe hemophilia B, would present an in-service seminar to his teacher and classmates about his bleeding order. “Every year we would sit down with the class and give them an idea of what that all meant,” the Gennesee, Michigan, mom says.
But when he entered seventh grade in September 2007, Eshton, now 13, decided to change the routine. “He said he didn’t want the full class knowing,” Joyce says. Instead, the necessary staff members received updates, and Eshton informed friends as he thought necessary.
The change was subtle, but significant. Eshton, like middle school students across the country, was taking a step away from his parents and asserting his independence. “This is a time when children want to gain autonomy and find their own identity,” says Jacqueline Lefkowitz, LCSW, at the New York Weill Cornell Center in New York City. “Part of the separation and individuation process from their parents entails that they join with their own peer group.”
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Eshton’s desire for privacy about his diagnosis is typical of adolescents whose main goal is fitting in. “There’s a certain amount of conformity that kids feel they have to have. Oftentimes, having a chronic bleeding disorder can pose an obstacle in the process,” Lefkowitz says.
For other families, disclosure remains business as usual, but with a twist. “Ever since my boys were in kindergarten, we’ve gone in to discuss their bleeding disorder with their teacher and classmates,” says Jill Lathrop of East Peoria, Illinois, mother of Sam, 12, and Nat, 10, both of whom have severe hemophilia B.
Jill insisted the boys be with her when she informed their teachers and classmates. “I wanted the teachers and staff to see my children as people,” she explains.
But when Sam entered middle school last September, he decided to take things into his own hands. “Sam took the reins for the meeting. He explained everything that needed to be explained,” says Jill.
[Steps for Living: Learn how to advocate for your child.]
As the National Hemophilia Foundation’s (NHF’s) Transition Guidelines for People with Bleeding Disorders suggest, parents of nine- to 12-year-olds should continue with school in-services to ensure the administration, classroom teachers and other staff are aware of the child’s condition and any changes that have occurred during the past year. If parents feel uncomfortable with the task, some NHF chapters and some hemophilia treatment centers (HTCs) offer healthcare professionals who will speak to school personnel. As children mature, however, parents must also realize the increased need for privacy, which may influence a child’s decisions concerning transparency with his peers. Some may choose to disclose to the entire class, while others may desire privacy. At this age, either choice is appropriate.
Julie Doar-Sinkfield says her son Hunter Planes, 13, no longer tells his friends right away about his severe hemophilia A. “There was a time everybody knew,” she says. “Now, disclosure with his friends isn’t always up front. It happens over time.”
Like most kids his age with hemophilia, Hunter realizes his diagnosis will always be a part of his life. But Hunter wants to be known for other things, Julie says. “He doesn’t want to be defined by it.”
“In middle school, there are so many issues of identity,” says Julie, executive director and founder of the William E. Doar Jr. Public Service School, a charter school for the performing arts in Washington, DC. “As an administrator, I want my staff to know what’s necessary for the safety of each student. But as a mother, my goal is to make him comfortable with who he is while preparing him to live on his own. That means I have to relinquish control in some areas and respect his decisions.”
Middle school children should also be prepared to take on some of the responsibilities of their care. “When I counsel children of this age group and their parents, I ask where they are in terms of infusing themselves,” says Mavis Harrop, MSSW, LCSW, of Vanderbilt Children’s Hospital Hemostasis and Thrombosis Clinic in Nashville, Tennessee. “If they haven’t started the process, I go over the different steps, encouraging the parents to let the child do more each time,” she says.
Some may be ready to self-infuse. Those who are not can start by mixing the factor, readying the area, keeping track of the inventory and completing paperwork for orders. Policies and arrangements for factor storage and the use of sharps at school vary from district to district, so, once again, it’s important for the parent to be proactive. Call the school and arrange a meeting to discuss the policies and procedures involved with your child’s infusion, especially if he is mature enough to self-infuse.
A child who is ready to infuse independently should know the universal precautions associated with it. The school nurse should also be aware of those basic principles and take the same precautions she would with any other child in her office. According to Ellen White, RN, MSN, hemophilia nurse coordinator at Newark Beth Israel Medical Center in New Jersey, most infusions are done at home. But if the child will be infusing at school, the family should provide a small sharps container for the needle and syringe. Parents may also choose to have factor stored at school. Again, arrangements for this vary from district to district. Some will accept an informal agreement, while others may require a formalized agreement, such as a 504 accommodation plan. (See the “504 Accommodation Plan” sidebar.)
Most important, the child should understand the bleeding disorder well enough to relay information about it to someone else, Harrop says. “This may be challenging initially because, thanks to prophylaxis, many have never had a bleed. The child needs to learn to recognize when he’s having a bleed and to tell his parents.”
The Lathrop family keeps a small plastic bag of supplies ready at home in case one of the boys has an emergency in school. Once, Sam scratched the roof of his mouth while eating potato chips at lunch. “It wouldn’t stop bleeding, so he called his father, who brought the supplies right over,” says Jill.
Sam has never had a breakthrough bleed, but his parents have coached him about recognizing one. “We had the boys talk with older men who have had knee and ankle injuries who can emphasize the importance of knowing what is going on in your own body,” Jill says.
“The boys have great body awareness,” she adds. “If they say something hurts and needs attention, I tell the school personnel to listen to them.” The use of a medical alert bracelet or necklace is also more important at this age, when the child is away from parents longer.
Children with von Willebrand disease also need to understand their disorder and know what treatment will stop the bleeding. “Girls in this age group will be getting their periods and will need to have supplies with them,” White says. “Since the flow may be heavier, they may need to change the pad more frequently. A change of clothes kept in a locker or backpack can be useful as well.”
On and Off the Field
The emphasis on athletics may prove problematic for middle school children with bleeding disorders. “Children now start sports at an early age, and if they enjoy it and are good at it, they want to continue,” says White. “Parents and coaches need to be aware that the child has a problem, but 99% of the time, he’ll be fine.” She suggests bringing extra factor to the games and insisting on extra padding if the child has a port.
Parents should also talk to the coach so he or she is aware of the medical implications. “The coach needs to know the child has a bleeding disorder, that he gets factor prior to the game and that he has extra factor with him if something happens,” White says. This is especially important for middle school athletes, because parents may not attend every practice or game.
Football, wrestling and other contact sports can cause injuries and should be avoided by children with bleeding disorders. (See the “Common Sports Injuries” sidebar.)
Participation levels in physical education classes and organized sports should be decided on an individual basis. The doctor and HTC team, parent and child should all discuss the pros and cons. However, even if a child is discouraged from participating, he or she may become involved in a neighborhood pick-up game or other spontaneous activity without adult supervision. “It becomes part of the child’s responsibility to know what he can and cannot do,” says White. “If he does choose to do something that causes a bleed, it’s important not to hide the fact.
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“Parents should treat the bleed without becoming angry or upset. If you react angrily, the child may become afraid to tell you the next time, and it could be quite serious.”
For those who are sidelined from physical activity or aren’t interested in it, the middle school years present a variety of other options. “The nice thing about middle school is that many extracurricular activities aren’t sports-oriented,” says Jill. Sam enjoys pursuits like the chess club and band. “Moving into junior high allowed him to pursue activities that are more scholarly and less physical,” Jill says.
Sam, who started private drum lessons when he was eight years old, plays in the school band. He also participates on the scholastic bowl team. “Now he’s able to connect with others who share his interests,” says Jill. “Worlds have opened up to him.”
Part of the transition to middle school is learning what interests the individual, Harrop says. “We tell parents to continue encouraging participation in groups, be it sports, scouts, church activities or other clubs,” she says. Involvement with such activities will help a child explore his own identity while receiving the acceptance he craves from peers who share his interests.
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The Give and Take
The changes that occur in middle school children are not limited to the school hours. Most of the issues of this transitional time are first addressed in the home. Parents should be prepared to help their child through the emotional upheaval these changes may bring.
As they strive to fit in with their peers, many children with bleeding disorders become angry at the differences they recognize in their lives. Every infusion, every accommodation and every limitation marks them as “different” at a time when blending in seems most important. “Some children at this stage become very angry about having hemophilia. They see it as very restrictive,” says Harrop.
If a child expresses anger and resentment about having a bleeding disorder, parents and teachers should allow the child to express his feelings. “Help him see that hemophilia is only a small part of who he is,” says Harrop. “It is important he knows he has it and that he can take care of it. He can make choices that will help not make it worse in terms of his joints.”
Honest and open communication between parent and child are vital during this stage of development. Support his attempts at independence. Encourage him to meet with others dealing with similar medical issues. Parents remain the best advocates and sounding boards for their children. Keep the lines of communication open, even when the child seems to shut down or prefer peers for companionship.
Once teachers know about the hemophilia, they may better understand your children emotionally and socially, as well as the challenges they may face academically. These are important keys that will aid in children’s success in a new school, so parents should be proactive in discussing emotional and social complications with those in authority at school.
Parents should recognize rebellion as just another part of the transition. “At this age, they’re supposed to push, and we’re supposed to push back,” says Joyce. “Eshton still needs us, and he knows it.”
And remember, this transition, like all growing pains, will pass eventually. Last year, Eshton decided not to discuss hemophilia with his whole class. This year, he’s planning a Hemophilia Week to educate the entire school. “He’s become more comfortable with sharing who he is,” his mom says. “He’s growing up.”