At school and play
Starting school for the first time or moving to a new school is daunting for any child or parent – with or without haemophilia. However, if you have haemophilia you may be in a dilemma about who to tell and how to manage potentially tricky situations in a sensitive way.
It’s important to ensure teachers are aware of your child’s condition and how to manage it. The booklet, Haemophilia in the Classroom, provides guidance for teachers on understanding and managing haemophilia at school. There is no need to tell other classmates or parents, but you may feel it will make your child’s life easier. Whether or not you do tell others is something for you to decide with your child.
Before talking to others, make sure that your child feels comfortable letting others know. Begin with a simple explanation of the key facts about the condition, emphasise that your child is just like other children—he just needs to be a little more careful about certain things—and that the condition is not contagious.
Playground and sports activities
The transition to the school years is a difficult time for any parent because they lose some of their control and must trust their child to act appropriately and safely. Before your child begins school, make sure he understands any limitations he has related to his haemophilia. Also make sure he knows when to report a bleed, and who at the school will be aware of his condition. Most children of school age are able to sense when a bleed has occurred.
Children want to do the same things as their friends and there is no reason why your child shouldn’t – as long as they follow a few recommended restrictions. Let your child learn within sensible limits what is right for them and for their haemophilia – as long as they avoid the most risky activities (e.g boxing, rugby and karate). That way they are less likely to reject restrictions as they mature.
It is normal for your child to start to chafe at the restrictions caused by his treatments as he matures. Talk to him honestly about why he needs to continue his treatments, and give him choices. For example, you could ask him when he prefers to infuse – and give him a choice – say at 6 or 7 p.m. on the designated treatment night. The more input that your youngster has in the plan, the more likely he’ll be to stick with it.
Embarrassment over Bruising
Your child may feel very self-conscious or embarrassed about any bruising they experience, and it may be something that other pupils or friends notice. It is important to address this issue sensitively and you should discuss it with the teacher. In PE for example, your child may wish to change in private or wear clothes that cover up any bruising.
Teasing and bullying
If your child experiences bullying or threats, encourage him—as you would other children—not to respond physically, but instead to tell a teacher or other adult.
Friends and play
Friendship and play is an important part of a child’s development and should be encouraged. It’s normal to be concerned about your child having a bleed as a result of play, but try not to be overprotective. Establish a rule that your child and his playmates may not hit each other. As long as no one is hitting, avoid jumping in to settle every argument that comes up. Let your child experiment with different ways to resolve conflict. As your child matures and starts to play independently, teach him how to talk to his friends about avoiding rough play.
You may find that as your child matures he is invited to stay at friends for a sleepover. The first time your child stays away from home is an anxious time for any parent. Staying with friends should not be a problem as long as the parents or guardians responsible for your son know what do to in an emergency.
It is completely normal for brothers or sisters of children with haemophilia to express negative feelings such as jealousy or resentment because they may feel their sibling gets all the attention. It is important that you let them express and acknowledge their feelings. Tell them it is OK to feel that way, as long as they don’t let such feelings cause them to hurt the child with haemophilia.
Siblings can cope with haemophilia better if they understand what’s going on, but remember that a five-year old will need a much simpler explanation than an older child. You may need to spend more time with siblings to make up for the additional time you spend managing your child’s haemophilia.