Cri-du-Chat is French for “Cat’s Cry”. It is the name given to the syndrome that Jie Jie has. The syndrome was discovered 50 years ago by the French geneticist, Jerome Lejeune. This syndrome is also known as 5p- Syndrome or Lejeune Syndrome.
So much has changed in 50 years. One of the major breakthroughs has been not institutionalizing the children. For the past twenty years, or so, children with CdCS have been able to remain at home with their families – with the discovery that they actually develop so much more through the interaction and intentional therapy play starting at a young age.
The big breakthrough for me, as an expat, was the internet and communicating with other families that have a child with CdCS. I have been so grateful that I’ve been able to receive the services that I’ve needed to help our daughter develop and grow here in Taipei, but the lack of communicating with other parents has been difficult. Now, I’m able to check on the Facebook page or the website to get the latest information or to get a question answered. I don’t feel as if I’m wading through an unknown land without a map or compass. I know have fellow travelers who have gone ahead and left markers to help me navigate this new territory of parenting.
This week, May 5th-11th is the 2nd annual International CdCS Awareness Week. It is a time for the families to be a voice for their child who can’t speak up. It’s a time for us to encourage each other, to be excited that we are not alone, to cheer our children on as they develop more than we ever expected or imagined. If you’d like learn more, here is a short video that gives you a glimpse of what these kids can do. I CAN
If you are living in Taipei or thinking about moving here with a special needs child, I wrote an article that just came out in Centered on Taipei‘s May issue titled “Living in Taipei with a Special Needs Child”.
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