You need to share information about your child with a complex condition and treatment if your child is:
- starting school for the first time
- returning to school after a diagnosis
- moving to a new grade or classroom setting
- moving to a new school
You may have some concerns about talking to your child’s school. You may
be worried about how she will fit in with her friends and keep up with
school work. The best way to handle this is to prepare in advance.
Meet with the school ahead of time
Make sure the school understands your child’s condition and what they
can do to help her. Meet the principal, school administrator, and
teacher face-to-face and explain your child’s condition, any limitations
she may have, and how they can help support her. Be open to answering
their questions in order to help increase their knowledge. You will need
to be a strong advocate for your child at school.
- Be clear about what cognitive and physical limitations your child
has so teachers can make the necessary accommodations. This might
include things like making allowances for extra time needed to
understand instructions or finish exams.
- Make sure to highlight your child’s strengths and areas of
interest. This is especially important as it can sometimes be difficult
for others to look past the condition to see your child’s abilities.
- Encourage the school to treat your child as they would any other child. Your child’s condition should not define your child.
- There are many ways to communicate with others about your child’s needs. You may wish to write a
letter for your child’s school that summarizes what the school needs to know about your child and her illness.
- Provide information to update new teachers each year or when your child moves to a new school.
What to do while your child is in school
It is up to you to make sure your child receives the education to which
she is entitled. There are many things you can do to make sure that your
child has a successful experience in school.
It is important to develop an ongoing relationship with your child’s
teacher to monitor her academic progress as well as her social
relationships with peers. Your child may feel tired sometimes because of medicines or poor sleep patterns during the night. This can affect their experience in school. Let your child’s doctor or other health care team members know if there
are any changes that you are concerned about, so they can help find
Support from classmates can also help your child. It is important that
your child interacts with her peers and not just with adults. Children
who feel they have more support from classmates are less likely to feel
depressed and anxious. In consultation with the teacher and the school,
seek out another student who may be interested in supporting your child
in class. Some ideas that have helped others are:
- Having a "safe friend": Find a responsible child a few years
older than your child, perhaps a neighbour or another student, to be
your child’s buddy. This friend can watch out for your child, lend an
ear if your child is having problems, and provide a sense of security.
- Having a peer tutor: A student in your child’s class, or in a
higher grade, may take on the role of "tutor." The details of the role
could be discussed with the teacher. It might simply involve weekly
"check in" meetings with your child to find out what she enjoyed
learning and what she found difficult that week.
Stay on top of your child's progress at school. Talk to her about which
subjects she does well at and which are more difficult. Set up regular
times to meet or communicate with her teacher to discuss your, or the
teacher’s, concerns. Find out the teacher’s perspective on how things
are going and how you can help. Organize tutoring or other support as
necessary if your child is struggling or falling behind. You can also
obtain advice from the health care team.
Talking to classmates about your sick child
- Children may worry about answering questions from classmates. You
can try and imagine questions your child may be asked and rehearse the
answers. Helping your child develop responses or scripts in advance can
help ease, to some extent, the anxiety related to responding to other
- In conjunction with your child, help other students understand her
condition. Consider offering to do a class presentation. This can help
create a supportive environment. In this session, the classmates can
learn about your child’s condition and ask any questions. It is
important to ask your child if she feels comfortable with an information
session being planned for her classroom, and if so, it would be helpful
to find out what your child wants others to know.
- If your child is linked to a hospital, a staff member may be able
to liaise with your child’s school. Include your child in the process as
much as she wants. Back-to-school resource kits, books, and videos are
also available for these sessions.
- Try and focus on concerns that classmates raise. Encourage children
to ask questions. Children take their cues from adults. Being
straightforward, answering questions honestly, and reassuring children
that they have no need to be scared can help create a supportive
environment. Be careful not to give out more information than your child
Telling other parents about your child’s illness
It is your decision how much information you wish to share with the
parents of your child’s classmates. You might wish to share some
information to enlist their support. It may also be important for them
to know how to handle an emergency if your child goes to their house to
play or study. Sharing information about your child’s condition is as
important as respecting your child’s privacy. Striking a balance between
disclosure and privacy is something that you can decide with your
child. Think about what you would like to say in order to maintain your