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.