Monday, 25 February 2013

Just one more thing ...

As parents, we had a ton of unanswered questions:
  • What causes RTS?
  • Is there a cure for RTS?
  • What should I know about RTS?
  • Will our daughter ever learn to speak?
  • Is there anything we can do to help Maria's development?
  • What therapies does Maria need?
  • Does Maria need any surgery?
  • Can Maria see and hear normally?
  • Why does Maria gorge and vomit?
  • What can we do to help Maria's attention deficit?
  • What are Maria's educational needs?
  • What is the best school for Maria: mainstream or special?
  • Should Maria be signing in Makaton or BSL?
  • Would Maria benefit from using pictures to communicate?
  • How should an RTS child be disciplined?
  • How will Maria cope when she gets older?
  • What at the legal rights of a person with Maria's syndrome? Will she ever vote?
  • Will Maria ever be totally independent or will she live with us for the rest of our lives?
  • What will happen to Maria after we die? Who will look after her?
  • Will Maria develop any nasty diseases or complications later in life?
  • How does Maria see the world? What are the limits, if any, of her understanding?
  • Maria is over-friendly to strangers; should we be worried for her later in life?
  • How will Maria's condition affect our other children? What do we tell them? 

The list was long and nobody seemed to have ready answers. 

It was frustrating to have all these worries gently placed on our shoulders, with so little help from the professionals. We were basically expected to work out all these answers for ourselves. It felt like we were the first family to have a child with RTS! 

Fortunately, as I read more research papers (sometimes paying up to $30 per paper) I managed to answer some of the questions for myself. 

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