Family
Support
Having someone in the family with Rett Syndrome has an
impact on everyone involved. There will be certain times during the life of
the person with Rett syndrome that are more difficult then others for those
that care for them. The diagnosis itself can be a very difficult time.
Families have described a range of emotions - anger, sadness, shock,
uncertainty, confusion and isolation that can leave you bewildered and take
a while to come to terms with. You may feel frightened and uncertain about
the future, especially as there is a variation of ability among people with
Rett syndrome. Other difficult times can be around adolescence, or when you
are planning for the person with Rett syndrome to live independently from
you and the family home. Again, these times involve a whole array of
emotions which can be conflicting. However, it is important to remember that
as well as these difficult periods, there will be other times where you will
receive infinite pleasure from being with your child, sibling or grandchild.
Contact with us means there is someone who will listen
to you, and with whom you can speak freely. We can also put you in touch
with other families and carers who understand the practical, social and
emotional issues in caring for someone with Rett syndrome. Being able to
talk things through is an opportunity to receive support, share experiences
and useful information. We can tell you about therapies and research
information that will help you to maintain the best care possible. Although
getting a diagnosis is devastating, knowing that your daughter or son has
Rett syndrome also allows you to focus the interventions of other
professionals. In this way your child will have the greatest chance of
developing and maintaining his or her skills.
Our main aim is to be as proactive as possible, so
that there is some structured support in place during particularly difficult
periods. We enable families to have personal contact with others who have
gone through a similar experience. Our hope is that everyone who contacts us
can be supported in whatever way they need, at a time that is right.
Contact Athena by phone on 0870 770 3266, or email
support@rettsyndrome.org.uk.
