School

School Days Part 2: Teacher, Parent, Child

Laurie Kelley October 1, 2023

It’s normal for anyone to be concerned at the thought of a child with hemophilia in the classroom, but it can especially worry the teacher, who bears responsibility for the students. Even if the teacher has some knowledge or experience, no two children with hemophilia are alike. Chances are, yours will be the first child with hemophilia that his teacher has met.

A group of seven multi-ethnic elementary school children, 7 to 9 years old, standing outside a building waiting to board a yellow school bus.

Many teachers have taught children with special needs, and they may be completely comfortable with your child. But for others, your first meeting may only temporarily relieve worries. A teacher could develop new concerns when left alone with your child for the day. Afraid of injuries, fearing the sight of blood, and anxious about being held responsible, a worried teacher might—without meaning to—show negative behaviors like overprotection, singling out, denial, and overreaction.

Overprotection

Fearing injuries, a teacher may want to exclude your child from some activities. Provide a list of activities that are safe for your child: using scissors, playing on the concrete or asphalt surface, using playground equipment, jumping rope, playing kickball and tag. If you want to forbid a specific activity—like hanging by his arms from the jungle gym after a forearm or shoulder bleed—write a note or email his classroom and physical education teachers. Ask them to find creative ways to include your child in an activity, even when a bleed sidelines him. He could be the assistant “coach” or scorekeeper, for example.

Singling Out

Your child’s teacher may accidentally single him out by announcing to the class that he has a blood disorder. The teacher may constantly remind other children not to hit your child. The phrase “Now, everyone except . . .” calls attention to your child. Most children dislike this kind of attention. Too much attention, especially when it sets a child apart from classmates, can produce resentment. Your child could be rejected or teased by classmates.

If your child must avoid a particular activity (with your approval), teachers should arrange a face-saving, tactful way to exclude him—one that doesn’t attack or shame him or draw attention to his disorder.

Denial

On most days, your child can participate in all activities and show no signs of bleeding. On other days, your child must be excused from certain activities when he is recovering from an injury or bleed. Outwardly, he appears fine, and his teacher may not recognize the need for rest. It’s even harder for the physical education teacher, who often hears a long list of illnesses and complaints from children who simply don’t want to run laps or climb ropes. Remember to stress that all teachers should trust your child’s judgment about a bleed or his recovery, with or without notes from home.3

Overreaction

Most teachers model emotionally mature behavior in the classroom, but some may gush “ooh” and “aah” over a child’s bruises and swellings, or exclaim, “Poor boy!” They may have good intentions, but this puts a spotlight on your child. He feels different from his classmates, and may develop negative feelings about hemophilia. Injuries and bleeds should be handled calmly and competently, with concern but with minimal fuss.

Teachers provide information about our children’s development. Teachers tell us how our children are adjusting to school. They can alert us to signs of depression, like withdrawal or slipping grades, which may indicate poor self-image or adjustment. They can tell us whether our children are interacting well with others or being bullied. They notice if our children are afraid to take risks.

Communication, trust, and respect between parent and teacher are key building blocks of a positive student–teacher relationship. Keep communication channels open by scheduling periodic meetings to answer school personnel questions. Consider becoming involved in school activities like parent–teacher groups. Volunteer at your child’s school. Attend open house events or chaperone a field trip, and model how you handle your child and his hemophilia. Sign up for your school’s online parent portal. Keep his teacher up-to-date with events at home; for example, a traumatic bleed while on vacation, the impending birth of a sibling, or anything that might cause stress and lead to a bleed or might affect school participation and attitude. Get involved with your child’s school experience to show your positive attitude and act as a role model.

Excerpted from Raising a Child with Hemophilia, 2023 Coming soon!

School Days! Part 1

Laurie Kelley September 17, 2023
A group of four multi-ethnic elementary school children, 7 to 9 years old, getting off a school bus. They are in a hurry, running as they step out of the doorway.

From ages six to twelve, your child develops from childhood to the brink of adolescence. This is a time of expansive physical and emotional growth and tremendous learning. Your child has a firm foothold on the path to independence. You want him to become independent, and you’re proud and happy to see him blossom. Yet you may have mixed feelings as you watch your child enter school for the first time.

Just as life settles down, and you feel competent and comfortable with hemophilia, the rest of the world will now meet your child with hemophilia. The child you loved, nurtured, and protected is now among other children and teachers who know little about his condition, in an environment beyond your supervision. It’s normal to feel anxious!

Your child may be anxious, too. School is his first venture into the “real” world. He will make independent decisions about his behavior, and he’ll take on more responsibility. He will interact with other children and make friends. With solid self-esteem, knowledge about hemophilia, and your unconditional love, your child will shine during these formative years!

FROM PRESCHOOL TO FIRST GRADE

It’s rare these days to find a child who spent his first five years at home full time, and this includes children with hemophilia. If your child has attended daycare, preschool, or pre-K, you may feel confident handling primary school issues related to hemophilia.

Regardless of how your child spent his preschool years, attending kindergarten means that he will be mainstreamed in a classroom. He’ll be supervised with up to 25 or more youngsters. Never has your child been so free to test his limits. You may worry constantly whether anyone will notice that he bumped his head or hurt his knee. You’ll wonder if your child is responsible enough to report that he has a bleed.

By the time he reaches first grade, your child may be graded or compared to others. He will begin to learn about his world through his class curriculum, and he’ll be expected to keep up with his peers. He may start having homework. If he misses school or homework assignments because of hemophilia—an elbow or wrist bleed, for example—he may feel anxious. Fortunately, given current medical care and prophylaxis, bleeds should rarely result in school absences.

Making sure your child is happy, confident, and healthy is a team effort now involving you, your child, and school personnel. What should you tell the school personnel? How can you promote the best understanding of this rare disorder? How will you explain hemophilia to your child’s classmates?

TELLING SCHOOL PERSONNEL

Put yourself in a teacher’s place: You have a classroom full of small children, all with differing backgrounds, personalities, energy levels, abilities, and challenges. Your job is to instruct them, manage them, account for individual differences, foster cooperation, evaluate their development, and have fun—for six hours every day! As the school year begins, you learn that one of your students is a wonderful child with a rare bleeding disorder. What now?

For the inexperienced, hemophilia may create images of intense bleeding, emergencies, and chaos. School personnel wonder: Can he use scissors? Can he play at recess? Is he as intelligent as the others? How can I watch him and the other children, too? What happens when he gets hurt? Will he bleed excessively?

Remember how much better you felt as a parent when you armed yourself with knowledge? Your child’s teachers will, too. But how do you begin?

  • Contact your HTC for assistance when meeting with school staff. The HTC staff will advise you, or may even come to school with you.
  • Order resources from HFA or NBDF to leave with school personnel.
  • Arrange a first meeting with school personnel before school starts.

Your first meeting should include the following:

  • Your child’s classroom teachers or head teacher (in lower grades)
  • Assistant teachers or teacher’s aide, if any
  • Principal, vice principal, or counselor
  • Physical education teacher
  • School nurse, school district nurse (if no nurse at school), health aide, or health clerk

Ask your HTC nurse or home health nurse to attend. This lends credibility and a professional perspective. Your HTC representative may also want to meet with school personnel privately to answer any questions they’re hesitant to ask in front of you.

Your child doesn’t need to be at this first meeting, although he should be told about it. Ask your child if he’d like to attend. He can practice taking personal responsibility for his health by speaking directly to school personnel about his abilities and any limitations.

Give school personnel some materials to read, but don’t overload them with information. Audiences usually remember only three main points of any meeting, so choose which three you want to emphasize. Your first meeting’s agenda should be simple and focused on handling hemophilia in school:

  • Explain hemophilia, and dispel myths.
  • Describe the symptoms of a bleed: swelling, limping, favoring a limb.
  • Describe the types of bleeds your child is likely to have.
  • Explain the different severity levels, and share your child’s level.
  • Describe your child’s specific limitations and abilities: he can play at recess; he can’t be hit in the chest with a kickball.
  • Emphasize that your child should be treated normally.
  • Supply your contact phone numbers.
  • Reassure everyone that they will not have to learn how to infuse.
  • Ask that factor be stored in the nurse’s office. (This may not be possible in private schools without a nurse.)
  • Provide emergency numbers and instructions in case you can’t be reached: HTC, hematologist, local pediatrician.

Reassure school personnel that they can treat your child normally, and they can believe him when he says he needs treatment. They should never single him out, announce that he has hemophilia, or make an issue of his medical ID bracelet or his bruises. They should take normal precautions and follow normal safety practices. Remind them also to follow standard first aid procedures for most injuries. This treatment should not be delayed while they try to notify you.

Later in the school year, you can meet again. School personnel will have more questions and may be more comfortable and eager to learn, as you once were.

Role of and Rules Regarding the School Nurse

Laurie Kelley August 27, 2023

It’s school time again across America! Are you ready? One way to get ready is to think about medical needs during school hours.

The school nurse is often your first line of defense when seeking a partner for good medical treatment during school hours. You might be able to infuse your child in the nurse’s office or involve the nurse in the infusion.

But when you meet with the school nurse, either alone or with your child’s team of teachers, it’s probably safe to assume that the school nurse doesn’t know much—or anything— about hemophilia. Some nurses may have a passing familiarity with hemophilia, but because hemophilia is so rare, most do not.

If you’re unsure of the school nurse’s understanding of hemophilia, ask your HTC nurse to intervene and act as a resource. Is the school nurse willing to be involved with hemophilia and assume some responsibility for your child? If so, then this nurse will be helpful.

Unfortunately, not all schools have part-time or full-time school nurses. According to the National Association of School Nurses (NASN), only about 40% of all US public schools have a full-time nurse; just 35% have a part-time nurse; and 25% have no nurse at all. And if your child attends a private school, it’s likely your school will not have a nurse. In schools with a part-time nurse, the district may have a full-time nurse, but the nurse rotates among several schools in the district and may visit your child’s school once a week at the most.

There are no US federal laws governing school nurse requirements, and school nurses are not all equal in education or professional abilities. School nurses fall into two types: registered nurses (RNs); and licensed practical nurses (LPNs) or licensed vocational nurses (LVNs). LVNs and LPNs are the same; they just go by different labels in different states. RNS have a bachelor’s degree from an accredited nursing program. LPNs normally complete a year of coursework, and they work under RN supervision on the job. In most states, LVNs/LPNs are not authorized to give IV meds, including factor. Check the regulations in your state.

Ask your school nurse if they are authorized and comfortable giving an IV infusion. Some RNs will not give IV medications, and you should not expect, or ask, any school nurse to access a port. Why? Because ports require special procedures that, if not followed correctly, can increase the risk of infection. In schools without a nurse, the nurse’s office is usually staffed by a nurse’s aide or health clerk—neither is qualified to administer IV meds. Although state laws vary on giving medications at school, your child with hemophilia is protected by federal laws. So if your child’s school does not have a nurse, it is the district’s responsibility to provide a nurse to assist your child at school and on field trips.

Excerpted from Raising a Child with Hemophilia, 2023

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