This is a good question, but there are no easy answers.
Not because Rett syndrome is so difficult but because our personal situation, family, neighbours, doctors, siblings, therapists, or education are very different and they all determine how we may feel about it. Living with Rett syndrome is not the same in every family. Our own prejudices are colouring it and most of the time this colour is dark.
It is dark because 'specialists', as soon as they can, will make sure that we adopt their deep 'medical' pessimism. From the very beginning. They do not give us any chance to fight Rett syndrome. No chance to believe in any other road than the predicted one. A road which is based on their statistics of other children who also didn't get a chance to fight Rett syndrome.
And so the circle of: NO hope- NO action- NO result, will be closed again. For us and for our girls.
"Don't try anything, don't lose your time, don't hope, don't believe. Go > home and surrender." That is the usual doctor's advice. Or "make another child instead".
Why? Is she not counting? Is she not A child? Well ....
Our society is not yet ready to fully respect individuals with Rett syndrome or any other developmental issue.
Our society is not adult enough to give a chance to these children, to believe in them and their possibilities, to give them time and to invest in them.
Our society is still discriminating people by their diagnosis even if it is not said out loud.
When people 'silently' discriminate a child with Rett syndrome than:
– they rather see her disabilities than her possibilities;
- they look with pity at their parents;
– they believe that nothing CAN be done to improve the child's development;
– they believe that the child is NOT able to learn anything at all;
– they overprotect her from her environment and normal life;
– they don't speak directly to a child that does not communicate with words;
– they like to stare at you: in the street, on the beach, in the shop, bus, park all over, even if they know very well that their behaviour is antisocial;
– they believe that they are the lucky ones not to have such a child and they think that we don't know their thoughts but we see them easy, through their body language, eyes and voice.
Always!!! With no exception.
Discrimination is still present among ordinary people and among the ordinary 'specialists'. Facing this daily was more difficult for me than Rett syndrome on its own. If I am totally honest I have to say: The most difficult thing in Rett syndrome for me was society NOT the symptoms.
With Rett syndrome itself I declared war from the beginning. And I found him after all, a very interesting enemy that shows many faces at the same time and likes to surprise you just when you think he will surrender. Probably all serious diseases will show the same evil character but this doesn't mean that we have to stop fighting them. On the contrary.
Quote: When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.--Pauline R. Kezer
Yes, this seemed logical to me, but after some time I realised that it was not a usual road that most people choose to walk on. We become the pioneers in such a decision and in such an experience. It is not easy to be a pioneer, but still I am happy that we have the power and strength to walk on that narrow path up the hill, where Rett syndrome has not such a dark heavy color.
There is much work here, much planning and structured days, unusual life .... but his is the fate of Rett syndrome anyway: with or without therapy. Still it helped us and HER to miss the most dramatic side of this neuronal disorder. And that makes life easier.
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