Saturday, 20 December 2008

Night to remember


The music throbbed.
The lights flashed
The dance floor was heaving.
I scanned the room and then I saw him.
The most handsome man there.
Our eyes met only briefly but his radiant smile remained as I walked towards him.
I danced his dance.
We stimmed we rocked.
I squeaked with his squeaks.
He held my hand HE HELD MY HAND!!!
I felt we were the only two people there. Worries forgotten as we lived in the moment.

I felt connected.

The evening was then cut short as Cs staff had to take him back (end of shift). But it was a magical night, Cs night club debut, one I will remember for a long time.


No fingers in ears!!

Cs first taste of alcohol!

Did i mention he held my hand!!!


He was fasinated by the smoke!


Merry Christmas Everyone!

Friday, 12 December 2008

Wasn't prepared

I wasn’t prepared for C growing up so fast!!

C has been in his group home 5 months now.
I wasn’t prepared for the adult world being so different to school. We try and prepare our kids with transitions but no one prepares the parents.
I wasn’t prepared for the nightmare sorting C’s benefits out. I should have known better!.

I wasn’t prepared for the number of socks they loose! Guess what C needs for xmas!

I wasn’t prepared that since C’s move he would loose nearly 8lbs in weight. And as you know he cant afford to loose weight.

I wasnt prepared for the first 3 months they didn't take C out. That's why i did the post about When labels dont help.

I wasn’t prepared that as C wont let anyone near him to cut his nails (some are now ingrown) or brush his teeth that he now has gum disease and will mean he will have to be knocked out. This why i did the post about stress and pain.

I wasn't prepared to receive in the post a 'Service User End of Life Policy statement' - (they had prepared me that i would receive a letter about staff Christmas holiday rotas) it was very gruelling reading., about how they would lay his body out and dispose of his possessions.

I am used to seeing psychologists pretty charts of Cs head banging with usually little or no explanations or actions.


But I wasn’t prepared at Cs latest review to see this chart of the frequency. Their intervention plan said ‘may prove challenging’. Very helpful.! But it dose explain why they are unable to clean his teeth and cut his nails and not take him out etc etc . But they didn't tell me all this. Did they really think because C does not speak or sign - I wouldn't notice these things? Also interesting the only part of the graph they showed me was where there was a dip.

Maybe I should have for seen all this as I knew C would find the move hard but I hadn’t realised what it would mean to his health. To be fair to them I think all this would have happened anywhere C had gone.

I do think C is now over the hardest part for him. He is now a bit more trusting of a couple of the staff and i now have a couple of allies to tell me things. So there is at last a glimmer of light at the end of the tunnel.


The other week when C was home I was buying a train ticket for us both - turned round and he was gone. As in a puff of smoke - but there was no smoke!! And no I wasn’t prepared for that! Even though I have lost C a few times in the past - its been a while! I scanned the ticket office, I scanned outside my mind going into over drive as all the stories I had read on Autism Vox and F.R.I.D.A. flashed through my brain. I ran over to the man on the ticket barrier and asked if he had seen my son ‘oh yes I let him through’ I dashed past rounded the corner and found C waiting looking very distressed. Phew!
On the way back I asked the man on the barrier why he had let C through - he told me C was following someone who looked liked me but with longer hair!

I had my hair cut during the week.