Practical advice and personal stories from children ... - MS Australia

When a parent has MS...
While growing up with a parent who has MS can be challenging, accessing
the right information and support will assist children and families to live
happy and fulfilling lives, despite MS.
MS is a reality for many children whose parents are living
with the disease. Some children grow up always knowing
their parent to have MS, while others experience the
effect of a parent’s diagnosis when they are well into
their childhood.
For children who are born to a parent with MS, many
aspects of living with the disease will seem fairly ‘normal’
compared with those whose lives suddenly change due
to a parent’s diagnosis. Either way, parents will naturally
question when to explain MS in more detail to their
children.
There is no right or wrong answer for when this should
be, says Elizabeth Stanton, Clinical Psychologist at MS
Australia – ACT/NSW/VIC. “A number of variables are at
play, such as how the parent is coping with the MS and
the nature and personality of the child (some may be
more inquisitive and eager to find out more, while others
may be anxious and frightened). It will also depend on
the family dynamic; how educated the parent is about
MS; the level of communication they have with their child;
and how open they have been about MS symptoms and
treatment over time. For example, an eight-year-old who
has always seen her parent inject medication may not be
as alarmed because she doesn’t know any different. An
eight-year-old who is confronted with this for the first
time is likely to react differently and may need support
to adjust.
“Overall, it’s important not to push and overwhelm the
child,” adds Stanton. “Just like the parent who has MS,
children will also need time and space to adjust. Parents
can begin by providing small amounts of age-appropriate
information and asking their child if they have any
questions, giving them the opportunity to absorb it and to
come up with additional questions in their own time.”
Quick Tips for Parents
How to help children adjust to, communicate
about, and live well with a parent’s MS diagnosis:
l Lead by example and foster open and honest
communication.
l Encourage children to use the MS Readathon
or times when they are learning about the body
at school to talk to their friends and/or ask you
questions about MS.
l Help kids understand symptoms in a practical,
age-appropriate way. For example, get children
to try tying shoe laces with socks on their
hands or put on someone else’s glasses to
imitate some common MS symptoms.
l Encourage kids to think about their own
strengths and weaknesses, and tell them what
yours are.
l Identify things that your children like to do with
you, as well as things they like to do on their
own or with friends. Encourage them to do
these things and tell them what you enjoy doing
with them as well.
l Be honest about your limits but don’t always
say ‘no’. Be creative and offer a compromise.
l Plan weekly meetings with all family members
to organise activities, solve problems, organise
a daily routine, etc.
l Prepare children for changes that will affect
them. For example, explain what will need to
happen if you have to go into hospital (e.g. who
will take care of them). Let them express their
fears and discuss solutions together.
l Try to keep a sense of humour.
Thinkstock/iStockphoto
16 intouch autumn 2011
www.msaustralia.org.au/actnswvic