Trying to keep smiling.

Hi everyone, I am back! well kind of…

The past few weeks have been tough going, we are still waiting for a decision on The Zach Project, it seems to be taking an interminable time.

While we wait, life has to go on and we have to try to behave as though we are not worried, super stressed or feel as though we have the weight of the world on our shoulders. Our super perceptive son would immediately pick up on that and so we try to continue to smile.

We know that we are by no means the only parents of a young person who has autism or a disability living this life, we know that there are so many other families out there who go through the motions of having a normal life when we don’t actually have much concept anymore of what a normal life looks like and at times even the strange life we have becomes even more difficult.

My sister who I am meeting today sent me a text telling me she needed to leave by 3 pm as they are having friends over this evening. It was a perfectly ordinary text but the idea of having friends over is something which only happens at Christmas in our house!

Zach actually loves it when we have a house full of people, he loves the buzz and the sound of happy chatter and laughter. John and I love it too, it makes us feel like any other family which is a privilege we rarely experience, and we of course enjoy seeing our friends but the extra energy required to do these things is hard to find. The idea of a late night is too dangerous when we are already in huge sleep deficit and constantly tired. To people  who haven’t experienced sleep deprivation for 18 years it is probably hard to get your head around.

Conventional behaviour at times looks so blissful, always being on the margins can be so lonely and feel so sad. Anyway enough of this wallowing, I am hoping I really will be back soon….I guess it just feels so hard when we are reliant on other people making massive decisions about Zach’s future.

Interestingly when I was giving his very nice Transition worker a gentle nudge earlier this week and telling him we had little time to sort things out for Zach and Beam needed to recruit staff for Zach’s team and that there was no plan B, he said…

‘well plan B would be residential care’

to which I replied

‘Zach would really hate to be taken away from his home’

to which he said

‘has Zach told you that?’

to which I said

‘ Zach has no speech’

Sometimes when you feel so astonished by something someone has said it is hard to get the words out of your mouth, but I fortunately recovered enough to explain that Zach is entitled to family life and choice like any other person.

Sorry if this is rather a miserable  post, I have been ill a lot lately and my sense of humour seems to have failed me….I will try harder next time to be positive, happy and bubbly.

It would be great to have some good news to share.