Starting school is a key milestone in any child’s life, and as the parent of a child with a bleeding disorder this can be a challenging time.
You might have worries about their safety, their ability to be involved, and how they will get along with the other children; these are perfectly natural feelings, especially if you have always been their carer. In order to combat these fears and make school something that everyone can look forward to, it is essential that preparations are made to make the school aware of the child’s condition, as well as educating your child. That way you will feel less anxious, the school will understand how to best look after a child with their condition, and your child can become more aware of their condition and how to manage it.
This is an excellent time to begin educating your child on their condition so that by the time they go to school they have a basic understanding of what their bleeding disorder is, and the impact it will have on their lives. Not only will it help them settle in to school with greater ease, but it will be useful as they grow up and begin to take responsibility for their own care and treatment. There are many booklets and online resources available that are written specifically for children, so that they can understand why they need treatment, why they should not play rough sports, and what to tell their friends. You can ask for this information at your haemophilia centre, who can provide you with information, resources, and can talk with your child about their bleeding disorder.
You may find this video helpful when trying to understand and explain your child’s bleeding disorder to teachers and other children:
Additionally here is a link to a helpful site that combines games and information regarding bleeding disorders:
– www.hemoaction.org – a WFH owned site which has several games for children to play to learn more.
In preparation for your child beginning school, it is also essential that a relationship between you and the school becomes established so that the needs of your child can be clearly communicated, and they are able to determine how to provide the best possible care. Your haemophilia centre can provide important information to the school, as well as arranging for a specialist nurse to meet with the teachers and school nurse to explain what the condition is, how it is managed, and what to do in emergencies. The essential information your child’s teacher needs to be aware of is:
– What is a bleed?
– What should they do in the event of a bleed or an emergency?
– Who do they contact? (They need to have the haemophilia centre’s contact details as well as your own)
You should also emphasise that your child is just like any other, and so maintaining a sense of normality is essential for their healthy development. Too often people can be so concerned with what can go wrong that they don’t consider the dangers of alienating the child and preventing them from being involved in every aspect of school life. Your haemophilia centre is always there for you to ask for advice, and they can support the transition to school life.
Inherited bleeding disorders are fairly rare, so this is probably the first time you have had a child with a condition like haemophilia under your care. To ensure their safety in the classroom, we advise you talk to the child’s parents about their child’s condition so that you can have a better understanding of it and how to prepare in case of an emergency. If you want any additional information or would like speak to a haemophilia care specialist, you should contact the child’s haemophilia centre.
– Have a basic understanding of the child’s condition and how to recognise a bleed
– When you take the child on trips, make sure you have the parent’s and haemophilia centre’s contact details
– In the event of an emergency – severe bleed, head injuries etc. – call the haemophilia centre who will be able to assess the situation and connect you to emergency services
What are the signs of a bleed?
– Visible bleeding from cuts/grazes, random nosebleeds, or from their mouth
– Large bumps and bruises
– Joint pain, swelling, and stiffness
That said, it is important that the child is encouraged to be involved in all school activities and is not treated differently. Their condition is largely managed through treatment, so it is essential for the child’s development that the focus is on providing an environment in which the child feels normal and is able to fit in with their classmates easily. Although you need to be aware of a child with a bleeding disorder, it should not become a barrier to their school experience.
For more information, you can use the resources listed below.