Thursday, 7 July 2016

Fragile X Awareness month - Day 6

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.

My sister Shelley is also in the carrier/premutation range. She'd had all 3 of her children when we first got the Fragile X news and immediately got her youngest son Bryn tested.

Having kids with any disability is very challenging, but with Fragile X there is another dimension. You see all of us carriers are dealing with our own sensory sensitivities, social anxiety, depression....if you were ever a fly on the wall in our closed FX carrier group you would see us comparing notes on a whole range of daily hurdles. Many of us take medication to help us cope.

Imagine a person who is sensitive to loud sounds, light, touch, emotional stimuli. Then put them in a room 24/7 with someone who is desperately looking for stimulation. They shout, bang on things, spin things, jump around, turn the volume to max, have daily meltdowns.....this is how it is for a full mutation child and their carrier parent.

It's just a good thing we all love each so much. 😊

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