|
Support
- a parent's special needs
Whilst your first
priority is looking after your child, it is extremely
important to ensure that your own needs are met. MAE is
a very stressful condition to cope with and fight, and
you’ll need all the help you can get. If you ever feel
that you are not coping, don’t be afraid to seek help
and support for yourself. Here are some important
avenues for support:
-
Professional –
neurologists, epilepsy nurses, specialist therapists
eg. speech / occupational therapists, teachers. It
is important to establish a good working
relationship with these individuals who should have
a reasonable understanding of what you're dealing with on
a day-to-day basis. They will have many useful
suggestions and strategies to help you, your family
and your child. You need to feel confident in the
competence and approachability of these
professionals who are responsible for your child's
care and development.
-
Your local and
national epilepsy organisation is there to provide you
with help and support, offering services such as
epilepsy education, advocacy assistance, specialised
library, and linking you to support groups in your
area. Visit our
locality guide
to see what's available in your region.
-
Internet
support groups – online forums are a tremendous and
invaluable source of support where you will find
people who've walked in your shoes, been there and
done that (or are still doing that). Because MAE is
rare, you may never actually meet another family
living with the condition, in person. Thanks to the
internet, you have the opportunity to correspond and
converse with many parents living with MAE. Please
get in touch with us!
http://health.groups.yahoo.com/group/doosesyndrome/
-
Family and
Friends – those closest to you will also be affected
by the diagnosis, and may at first be unsure of how
to relate or react. Don’t be afraid to approach
them, however, and give them a chance to share the
load. Refer them to this site so that they can find
out for themselves more about the condition.
-
Counselling -
you may find yourself overwhelmed, struggling to
"keep it together" or perhaps you might just need
someone to talk to. A professional councillor can
help you find ways to cope with the difficulties you
may be facing.
-
Others – people
from your place of worship, local support groups for
parents and carers, etc.
¨
|