Monday, 25 July 2016

Fragile X Awareness month - Day 25

For a very long time we didn't leave the house much at all. We certainly didn't do much socialising. We became very isolated. When you have kids who are very sensitive to too much stimulation and parents who are sleep deprived, going out in public can get messy.

The problem is that's a very slippery slope. The kids aren't getting pushed to learn coping mechanisms and we parents start feeling very alone and depression isn't far behind. I didn't know that's what we were doing at the time, but I look back now and see the cave we built to hide in.


Thankfully today we've started to crawl back out of the cave. Finding other people with special needs kids to talk to is imperative. Well planned outings on a regular basis help the kids learn the skills to cope. Getting the kids into programs that are well supported but still get them mixing with people other than their parents (not something that stresses the kids out because that will destroy all the hard work). These are all vital things to do.

We have been able to take our kids out to restaurants, sit and eat a meal and enjoy ourselves. I'm not saying we linger for hours, but it certainly makes us feel a little more 'normal'. If you ever see us out at Bunnings or down the park, we are loud and chaotic, but we are getting out there. :)

www.fragilex.org.au

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