Multiple sclerosis
affects not just the person diagnosed with the disease, but
the entire family. Dealing with an unpredictable chronic
disease, the changes it can bring, its costs and the many
choices to be made, puts a lot of stress on all family members.
No two families are alike: they have different needs, emotional
styles and ways to cope with the disease. However, they all
have something in common: they try to make room for MS in
the family without giving it more space than necessary.
Research, some of it carried out by the
MS Society, shows that children cope and adjust relatively well
when a parent has MS. However, all children, regardless of their
age, have common concerns. They ask themselves whether their
parent is going to be okay or if the parent will be able to
take care of them (the children) as they did before.
Parents have their own feelings of anxiety
and guilt. Because of such feelings, they may tend to underestimate
the impact of MS on their children. They may be hesitant to
provide information about MS to their children; they may not
recognize the need for outside help for their children and/or
the family.
Attempting to ignore MS may only create feelings
that the disease is something shameful, causing family members
to withdraw from each other.
"Communication is key: children need accurate, timely,
age-appropriate information from their parents in order to cope
well with this disease that has become part of the family,"
said Dr. Rosalind Kalb from the National MS Society (USA).
Growing Up Strong: Help for your family
- Learn
about children’s usual fears and concerns
at different ages.
- Talk
to them about MS based on their age, needs, questions
and personality.
- Answer
all questions in a simple and honest way.
- Adjust
the information you provide to your child as s/he
grows.
- MS
is unpredictable and can change families’
lives: don’t be afraid to seek outside support
From the pre-schooler to the teenager,
discussions about MS should be adapted to the child’s age,
individual concerns and needs. "Many children do not ask
questions but still want information. They may have misconceptions
and fears about MS, and want to know how it affects their parent
and themselves," said Dr. Brenda Banwell, director of the
Pediatric MS Clinic, Hospital for Sick Children in Toronto. "However,
children can be overwhelmed by too much information and thus prefer
to know less about the disease as a way to cope with it."
It is important to know children’s
usual fears and concerns at different ages and answer their
questions in a simple and honest way. Educating children about
MS as they grow up and mature is an important on-going activity.
Through various programs and services, the
MS Society continues to help families stay informed about
multiple
sclerosis, recognize and accept their feelings about the disease,
and communicate comfortably with one another. Publications
such
as How to
Talk About MS with Your Children and Keep
Your Balance are two excellent
resources for teenagers and parents.
One of the programs that focused mainly on
supporting children of parents with MS is Growing Up Strong.
As part of this project, children from across Canada took part
in educational and recreational programs offered by various
chapters and divisions.
Families attended events where they met
others living with MS. Students from schools in Edmonton, Calgary,
and Ottawa attended presentations about MS and living with
a
disability or chronic illness. These presentations helped students
and teachers understand the challenges children face when a
parent has MS. Three new websites were developed as part of
this project.
The findings of Growing Up Strong helped
chapters and divisions create successful programs for families
living with MS. Contact your local
chapter to find out more about any events, resources or
other activities for your children and family, or call your
division office at 1-800-268-7582.
The information in this article is based
on presentations of Dr. Rosalind Kalb, National MS Society (USA),
and Dr. Brenda Banwell and Jennifer Boyd, R.N., Hospital for
Sick Children, Toronto, at the Growing Up Strong Conference,
November 2004. This article originally appeared in the May 2005
issue of MS Canada.
As a parent with multiple sclerosis, you may have some questions about how to explain MS to your children
or concerns about how your children will cope with MS in the
family. Multiple sclerosis may affect family roles and may change
some of the ways that you spend time with your children. But
MS does not affect the most important part of being a parent:
your ability to provide your children with love, guidance and
support. 