Thursday 14 July 2016

Fragile X Awareness month - Day 13

If you want to find out more about FX you can go to the Fragile X Association of Australia website. I will be sharing our families story.

Being a carrier and mum to an FX child, an Aspergers child and also another beautiful little girl would be hard enough for anyone. But Shelley has an added level of difficulty, she is a single mum.

The rate of divorce is proportionally higher amongst families with disability. The stresses are enormous and it is often difficult for parents to face the idea that they have a child with a disability. There are many who just walk away or are unable to cope.

For Shelley the two hourly peg feeds for Bryn, the home schooling for Rohan (who can't cope in an education system hopelessly unprepared to deal with children with additional needs) and raising her daughter are all on her shoulders. The days are long and relentless with little time to find any personal space.

http://fragilex.org.au

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