Emotional
Impact of Diagnosis
If you have recently found out that your daughter
or son has Rett syndrome you may still be reeling from the shock, or just
feel numb, and find the news hard to take in. All your dreams, hopes and
expectations for the future of your child may seem to fade or disappear
altogether. You may feel very anxious, confused and uncertain about what
lies ahead, or have a sense of panic or anger. Whatever your feelings, they
are completely natural, and are a part of a normal and understandable
response to a diagnosis. Though it is very painful, these feelings are
usually the start of a grieving process as you realise that your daughter or
son has special needs.
At this point in time, you may or may not know
anything about Rett syndrome. You may have just received a letter or
telephone call confirming the diagnosis, but no more information than that.
Alternatively, you may have been on the internet to find out as much as you
can, and feel frightened about what you have read.
A diagnosis of Rett Syndrome has an impact on the
whole family – parents, siblings, grandparents, uncles, aunts and other
relatives. You may feel shocked, isolated and confused about what to tell
others - or not want to talk at all. You may feel frightened about what the
future will hold, especially as there is a variation of ability among people
with Rett syndrome. It is likely that you will experience a whole range of
different feelings from anger, guilt, resentment and exhaustion to numbness
or anxiety.
You may be asking 'why me? Why did this happen to
us; why is my child different? What caused it?' These are questions which
are always hard to ask or to find an answer to. You may believe you are
somehow responsible for what happened. You may find yourselves questioning
your behaviour – did you eat/drink the 'right’ things and so on. At times
like these it is important to remember that Rett syndrome is a genetic
disorder and not in any way related to what you may or may not have done.
