Wednesday 27 July 2016

Fragile X Awareness month - Day 27

Everyone has a different opinion about diagnosis. My personal opinion is diagnosis is a good thing. It allows you to find out more about the root cause of symptoms and issues which can help with treating them. It certainly impacts the way I parent my children. I am far more understanding of meltdowns, and other behaviours that could be perceived as 'bad behaviour'. I am now also able to understand a lot more about myself. I wish I'd known I had FX a long time ago, it would have helped me a lot.

Throughout the process of trying to find out what was happening with Connor (and later Merryn), getting a diagnosis and pursuing therapy and treatment I came across a lot of people who felt the opposite. People who felt I was 'labelling' my kids, putting them through unnecessary appointments, and that I was looking for something that wasn't there. Some of those people were Doctors.

In the end I trusted my instincts. I got my kids diagnosed, into programs and therapies, and while everything we've done hasn't been successful a lot of things have made a real difference. Without a diagnosis we wouldn't have been able to access a number of services that have helped us all.

I firmly believe the instincts of mum's should never be ignored and that we as women need to back ourselves. We should never let anyone tell us we are over reacting, we know our kids better than anyone else.

www.fragilex.org.au

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