CARING FOR A CHILD:
Before the school year begins, schedule
a meeting with your child's teachers, school administrator,
guidance counselor and school nurse to explain your child's
condition and treatment. It is important to develop a cooperative
relationship with school officials and teachers so that
they can help your child continue to learn using the most
appropriate programs. Make a list of points that you want
to cover, including any special requests. Topics to cover
might include academic issues resulting from illness and
fatigue, social issues resulting from being different (too
weak, too small, or cannot participate in sports), and
practical issues (special dietary needs, medications, restrictions
on gym classes, availability of external defibrillators).
If you have a school age child that needs to be hospitalized, you may need
to make special arrangements with the school such as make-up assignments to
be done away from school, extra tutoring in missed subjects and possibly shortened
school days immediately following hospitalization. A couple of weeks after
your child returns to school, you may wish to follow up with his/her teachers
to find out how he/she is adjusting. On occasion, children behave differently
in school than at home.
Here are some additional tips on how to educate the school staff about the
special needs and circumstances of your child.
- Ask your child's physician to write
a letter briefly explaining his condition and giving
specific guidelines about acceptable and unacceptable
activities. Depending on your child's age, this may
include gym, playground or sports restrictions. Or
ask your child's physician to complete a standardized
medical form that gives a concise but comprehensive
summary of your child's condition.
- The school nurse needs to be fully
armed with enough information to keep your child safe
and healthy. This includes an understanding of your
child's medical condition and treatments (i.e. medication
schedule or previous medical procedures), the contact
numbers of your child's physicians, and a list of signs
and symptoms to watch out for (i.e. possible side effects
from medication, signs of heart failure or cardiac
- For children that need to take medication
during school hours, you may need to arrange a place
such as the nurse's office where the medication can
be stored (some need to be refrigerated) and taken
at prescribed times. For younger children, you may
need to ask the nurse or teacher to administer it.
- The school nurse, teachers and staff
(i.e. administrative, lunchtime supervisors) should
know how to react in the event of a cardiac emergency.
It is important that teachers be briefed on emergency
protocol, emergency numbers to call and the usage of
appropriate medical equipment. Due to the increased
focus on school deaths related to sudden cardiac arrests,
certain states have passed legislation requiring schools
to carry external defibrillators. If your child's school
does not have one, you should speak to school officials
about obtaining one. There are various automatic external defibrillator (AED) manufacturers and non-profits that can assist schools in obtaining an AED.
- Your school counselor and teacher
should be aware of possible social issues related to
your child's condition. Because your child may be limited
in their participation or be smaller in size, they
may be more prone to teasing or bullying by other children.
Enlist the help of your child's teachers to educate
your child's peer groups on cardiomyopathy.