Oh I know it’s not personal and it’s not that bad really but just sometimes it feels like it!
Today we had all been to a Learning Disabilities event organised by the Local Authority describing their provision and services for adults with learning disabilities.
It was a good day, lots of information and many people to meet. We found new sources of support and came away inspired by new ideas and possibilities.
We also came home tired.
And then she did it again. Just when I thought we were going to sit down quietly for 5 minutes before going out for an evening meeting, up comes one of those perennial, obsessive issues…
What does your Williams person persue?
Right now Linda is obsessed with buying and reading newspapers. Not one, not two but at least three each day seems to be the minimum required to satisfy her obsession.
Today we come in, unpack our bags revealing the reams, yes, literally reams of flyers, leaflets and newsletters that Linda collected on her tours today and she announces “I’m just going out to buy the newspapers”.
The only opportunity to read these newspapers would be while she was sitting in bed, when she should have been sleeping. One thing we’re increasingly aware of is that the demons, the anxiety, the agitation gets much worse when Linda gets tired… and here she was, planning to buy newspapers that I knew would keep her awake longer than was good for her.
It was more than my fragile heart could stand as I can see the sacks of recycled paper standing outside the house and imagine the frayed nerves the following day.
No amount of reasoning would suffice though I tried my best to gently dissuade her… “There’s no time, We’re just about to go out again, When we come back we’ll be going straight to bed, You can save your money for a dinosaur…”
The door slammed as Linda left the room.
“It’s not fair” rang through the air and I knew I would give in once more…
That cheerful cocktail party disposition was nowhere to be seen. Another sign that, as for many people with Williams Syndrome, Linda seems to have a low frustration threshold – or is it just an outburst as they realise – again – that they have so little control over their lives?
Could I have done any more? Should I have refused her request? Do they ever learn when enough is enough?
Thoughts on a postcard – or in the comments box – please!