Wednesday 28 October 2015

Playful Treasures

It's been about 4 years since Connors' diagnosis turned our world upside down, and about 7 years since I slept through the night without interruption.  During that time I've been a stay at home mum and it's certainly keeping me very busy.  

For some time now I've been saying I'm unemployable, after years of stress and chronic sleep deprivation.  My ability to focus and concentrate is at about goldfish levels.  However, being a single income family is really hard, especially with all the additional medical and therapy bills coming in. 

So my sister and I have decided to launch our own online business.  We've called it Playful Treasures and it is focused on sensory jewellery.  Connor goes through quite a few chewy pendants and Merryn is starting to use them now too.  We wanted to source good quality products and provide them at a good price to families, for sensory seeking, teething and fashion jewellery.

 

Tuesday 27 October 2015

Toilet Training

Toilet training is a well known problem with FX kids.  Most full mutation kids are 8 or older before they start to grasp the concept, and some never do.

Connor is certainly fascinated by others using the toilet, but has no interest is using one himself.  After discussions with his teacher, we agree he's not ready to even start the process yet and he's now 6.

Merryn has gone through a lot of phases with toilet training, everything from interest to hysterics and back again.  I have finally been able to win her over though, and it has been with the use of a rewards chart and what is now an every growing stable of My Little Pony's.  It has created another issue around her now expecting 'treats' all the time, but I am absolutely thrilled that she has now embraced wearing undies and using a toilet/pot.

On The FXAA Board

As of this Sunday I am now on the Fragile X Association of Australia board.  There is a lot of work to be done in relation to education, research, advocacy and the support of Fragile X families.  I'm hoping to be able to contribute to that from the perspective of an FX carrier, daughter of a carrier with FXTAS and mother and aunt to full mutation FX children.

Verification Complete!

The verification process is done and Connor has been approved for all 6 years of special school.  He has come back with intellectual disability and ASD impairments, as well as an IQ of 42.

He will have to go through verification again when he goes to transition from primary school to high school (apparently Qld Ed think someone with an genetically caused disability can spontaneously 'recover').  But for now we can just focus on making sure Connor gets a good education and is happy and meeting his potential.  Yay!