Sunday, 11 December 2011
FXS Christmas Party 2011
We met other Fragile X families yesterday. I had been worried it was going to be quite confronting seeing other kids who were older and behaving how Connor will end up. It ended up being really nice. All the parents were lovely and they kids were a crazy maniac bunch, but all still just being kids.
Connor had a great time racing around like a maniac and getting into everything. He is super hard work in a public environment but if you give him your undivided attention he gets so much out of it. I did think the other kids seemed a lot me adventurous than he is. He loves the slippery slide but won't go on it without me or Andrew there to help him. He's such a careful little old man when it comes to things like that. I was thrilled that he ended up climbing the steps to the slide a few times with me just standing beside him.
It was also nice to talk about our experience so far with other people who were on the same path. It felt like we weren't so isolated and not the only ones going through it, which was reassuring. The conversation did highlight how terrible doctors are to parents though and everyone seems to have stories about being criticized and ignored and having to fight to get answers before (and even after) the diagnosis. The medical profession really doesn't understand how they tear families apart who are going to them for help. I feel very lucky that I ended up finding some really great therapists and specialists for Connor.