Some Aspects of the Impact of a
Diagnosis of Rett Syndrome
Facing the reality of a diagnosis is a tremendous
shock and the prospect of looking after a child who may need a high level of
care throughout their life can be overwhelming. It's really important at
this time to be around people who can support you, both practically and
emotionally.
It can be demanding managing the arrangements to
obtain support from social and health care authorities, from friends and
family and from each other. The care routine at home may take a while to get
use to, and it may not be easy to decide who will be the primary carer. Each
parent will learn to cope in their own way and will make the arrangements
they feel most able to sustain. If you are married or in a relationship you
may find there is conflict between you. Under the circumstances this is
natural, because a parent or carer’s situation is a stressful one. It might
be more worrying if no conflict was being experienced as this might indicate
emotions were being suppressed. However much you love your child, the
demands of caring can reduce the freedom of parents or carers and influences
future choices. It can be helpful to openly acknowledge this and talk it
through with each other, or with a trusted friend or counsellor.
You may find there are still many people,
including professionals, who have not heard of Rett syndrome, and this may
increase any sense of isolation you have. Many parents describe how helpful
it is to talk to other parents who have been through similar experiences.
Contact with the Support Service Manager at the Rett Syndrome Association UK
means there is someone who will listen to you, and who can 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. The Support Service Manager can also tell you about
therapies and research information that will help you maintain the best care
possible, and support you in trying to access other services.
Receiving a diagnosis is a profoundly painful
experience, yet knowing your child has Rett syndrome also means that the
involvement of professionals can be focussed in this context. This will give
your daughter or son the maximum chance of developing and maintaining his or
her skills.
Our aim, as Support Service Managers, is to be as
proactive as possible, so that there is some structured support in place
during particularly difficult periods. By enabling families and carers to
have personal contact with others who have been in a similar situation we
hope everyone who contacts us can be supported in whatever way they need, at
the time that is right for them.
Contact us by phone on 0870 770 3266 or email
Athena
