Shari Luckey’s son, Jay, has severe hemophilia. When it was time for him to start preschool, there were some anxious moments. “We were very concerned about him getting injured and not realizing it or not telling the teacher,” Luckey says. “So to prepare, we did a lot of education with the staff about what to look for and a lot of practicing with him about what he should do if he felt any pain or discomfort. I even sat in the hallway at school for a few weeks, just in case.”
Jay, now 11, has changed schools several times because of family moves; the family now lives in Ann Arbor, Michigan. “We have been met with fear at every new school and every new teacher situation, although that has lessened as he’s gotten older, and teachers can rely on what he tells them,” Luckey says. “When we go to a new school, we have a meeting with as many staff people as we can get to come, and we meet with his new teachers every year.”
It is the responsibility of every parent of a child with a bleeding disorder to ensure that his or her child’s school experience is as normal and safe as possible. For a parent, that means doing your homework before your child enrolls in day care, preschool or kindergarten, or moves to a new school. Your local hemophilia organization and hemophilia treatment center (HTC) can help you understand your rights under the law, assemble information packets to educate school personnel about bleeding disorders and arrange a meeting at school to discuss your child’s needs.
While safety is vital, so is your child’s education. “Parents need to realize that school is an important milestone in socialization and that a good basic education is essential to a successful future and a job that will provide the health insurance she or he will need as an adult,” says Ellen White, hemophilia nurse coordinator at the Children’s Hospital of New Jersey at Newark Beth Israel Medical Center. “Children need to know that they belong in school, and that having a bleeding disorder does not excuse them from participating in class and doing their homework.”
While a child may be nervous about starting school, and parents may worry about entrusting their child to the care of others, probably the most anxious of all are school personnel who may have no prior experience with bleeding disorders. Joby Robinson, PhD, child advocacy coordinator at the Children’s Center for Cancer and Blood Disorders at Palmetto Health Hospital in Columbia, South Carolina, recently surveyed 300 educators throughout the state and found that of 13 chronic health conditions, educators most feared dealing with hemophilia. Furthermore, 83% said they had had little or no training about chronic health conditions, either in college or on the job.
Fear stems from common misconceptions about bleeding disorders, Robinson explains. Many teachers think all bleeds are external and worry that a child with hemophilia could bleed to death from a minor cut or scrape. They may not understand that signs of an internal bleed demand immediate attention and may feel unduly guilty if a child develops a spontaneous bleed. Often, school staff think children with bleeding disorders can’t engage in many normal school activities.
Before they can quell the fears of others, however, parents must first confront their own misgivings about sending their child into a new situation.
“It’s perfectly normal for parents to have concerns and fears, so I think it’s real important to get together with the HTC staff and air those concerns before you go to the school,” Robinson says. “The first school meeting can be a little intimidating, so it also helps to practice going over the major points you want to address with the school staff.”
Some HTCs offer workshops to educate parents about their rights and help them practice talking to school personnel. Often, an HTC nurse or other staff members will accompany parents to the school meeting, or arrange an inservice with the school staff. If you are unable to find a nurse, contact your local National Hemophilia Foundation (NHF) chapter to put you in touch with an expert who can help.
[Steps for Living: Sample Letter for Day Care/Preschool (.pdf)]
Before the school year starts, parents should contact the school nurse, guidance counselor or principal to request a meeting with the staff. Ask to include your child’s main classroom teacher, physical education teacher, school nurse and a representative of the administration. (Some private schools and school districts are cutting back on school nurses, so not all schools have a nurse or the nurse may only be available on a limited number of days.) You might also invite the child’s teacher from a previous year, suggests Shelley Gerson, immediate past president of the Hemophilia Foundation of Michigan and a former teacher, counselor and camp director.
[Steps for Living: Physical Education, Sports Teams and Recess]
“It can be really beneficial and reassuring for teachers to hear from other teachers who have had experience with your child,” Gerson says.
Middle school or high school children should be encouraged to attend the meeting and speak about their bleeding disorder. Robinson suggests that even young children be present at the beginning of the meeting, perhaps to hand out written information or come in at the end to meet the school staff. If the child is not present, simply showing some pictures to the group can break the ice and help everyone relax, she adds.
At the meeting, distribute brochures or information sheets that explain the basics of bleeding disorders, how to recognize a bleed, emergency contact numbers and how to handle various situations that may arise. For example, make sure the staff know that an injury to the head, neck or abdomen constitutes a real emergency and that they should call 911 right away. School staff also should know the severity of your child’s bleeding disorder, special precautions that need to be taken if he or she has an implanted port or an inhibitor, whether your child is on prophylaxis, what medications to avoid, and the sports and physical activities in which he or she can safely participate.
This is a good time for parents to share with school staff the family’s emergency and/or disaster plan for their household. At the same time they can obtain information from the school about its evacuation or other contingency plans if something were to happen on school grounds or nearby. Parents can ask: What is your plan to get together with your child? What does the school do? Give staff several contact numbers of relatives, friends or other guardians who are authorized to pick up your child if you cannot be there.
Work with the nurse and teachers to draft a written individualized healthcare plan (IHP) for your child. (See “Laws That Protect Your Child.”) Arrange to share this information with anyone else who will have regular contact with your child, such as a bus driver, lunchroom or recess aide, and coach or other extracurricular activity supervisor.
[Steps for Living: Field Trips & Extracurricular Activities]
Robinson cautions parents not to assume that the healthcare plan information will be kept on file from year to year. It’s a good idea to touch base with the school at the beginning of each year, because school personnel change—and so does your child.
Throughout a child’s school years, it is important to maintain a positive attitude. Make it clear that you are there to support the school staff to ensure that your child feels safe and comfortable at school. That means parents should expect to be on call to check out or treat symptoms of a bleed or simply to allay the fears of school staff.
“We tell them if you’re in doubt, just call us and we’ll make the decision,” Luckey says. “Particularly in the younger grades, we’d get a lot of calls from the teacher in the first month of school, but it lessened as they got used to him.”
“I like it if they [the school staff] are a little scared,” says April Baird of Clinton, South Carolina, whose son Clayton, 12, has severe hemophilia. “I don’t care if they call me every day.”
It is up to parents to guard against too little or too much caution on the part of schools. “We had an incident in fourth grade where he got hurt and asked if he could go to the health room,” Baird says. “The teacher wouldn’t let him, and by the time he got home he had a big knot on his head. I told him in the future he should just get up and go anyway. I knew they’d be calling me, and I could deal with the situation then.”
On the other hand, Baird says, “Last year we had a nurse who called all the time, and when I got to school she’d tell me she’d feel more comfortable if I’d just take him home. Then I’d have to get more aggressive and let her know that I’ve checked it out, he’s had a shot, and there’s nothing more that can be done, so he needs to stay in school.”
When Tammy McFadden of Rock Hill, South Carolina, went to visit the preschool her son Dentavious, now 11, would attend, she discovered that a staff member had already been assigned to stay with him on the playground. “I had to let them know that he’s a normal kid and I didn’t want him singled out,” she says. “When I explained what they needed to look for, they scaled back a bit.”
Know Your Rights
When dealing with schools, it’s important to know that the law is on your side. Schools are required to make necessary accommodations to provide every child with a proper education in the least restrictive environment. (See “Laws That Protect Your Child” for an explanation of the different laws and written health plans that might apply to your child.)
While some schools may balk at allowing older kids or parents to infuse factor during school hours because of the risk of exposure to needles and medical waste, you do have the right to do so. If you have problems convincing the school staff to allow your child to infuse, you may have to request a hearing. Your child’s hematologist and HTC nurse may need to intervene. You also may need to reassure the school that the child has been trained in self-infusion.
[Steps for Living: Teaching Kids About Self-Infusion]
“We always encourage parents to keep a dose of factor at school, stressing that we don’t expect the school nurse to administer it, but so that a parent doesn’t have to go home to get it or that if a child is self-infusing he can do it there without having to miss class,” says White, the hemophilia nurse from Children’s Hospital of New Jersey at Newark Beth Israel Medical Center. Make sure the school has a refrigerator to store the factor and also discuss where staff will store the syringes.
Another important safeguard is the right to privacy. Ask teachers not to discuss your child’s health or health needs casually anywhere at school. It also is up to you and your child—not the school—to decide whether and how to tell classmates about the bleeding disorder. Often, older kids prefer that their peers not know, while younger children may be less inhibited.
In short, when dealing with your child’s school, Robinson says, “It is really important that parents come across as team players, that they express appreciation to the school and make it clear that they’re there to support their child and the teachers so their child can have the most normal school experience possible. A parent’s motto should be ‘advocate and educate.’”
[Steps for Living: Learn how to advocate for your child]