Very few Williams Syndrome adults live independently. Research and longer term studies show a majority spend most or all of their adult lives being supported to various degrees by their families. Linda is no exception.
But, as I need to go out and earn some money, during the week we are really fortunate to have a mixture of care packages in place that give Linda the opportunity to do many different activities.
I needed to take Linda for a blood test recently which meant she missed her scheduled pick up to her day activities. It had been agreed that after the appointment I would take Linda to a house which is used as the meeting place for many adults with learning difficulties in our local area.
We arrived around noon and there were maybe eight or ten service users accompanied by four staff who were busy trying to prepare the lunches that each person had brought with them. I’d prepared a packed lunch for Linda but it seemed that most people were having microwaved “ready meals”. It was a bit chaotic in a small space and nothing could be further from the concept of a family or a community sitting down to share a meal. I noted two small tables against the walls in different parts of the room and not enough chairs for all the people who were there…
I don’t know if I was shocked by what I saw, maybe just dismayed and I didn’t feel comfortable leaving Linda in that environment…
“Are you OK” I checked as she gazed about, checking out who was there, looking for friends.
“Yeh, fine” she said, slipping her bag off her back and moving to find the last remaining seat at a table before one of the others wandering in the room claimed it as their own.
She put her lunch pack down on the table with a cheery “Hi you guys!” to the two current occupants, two Downs Syndrome adults who didn’t so much as blink in response or acknowledge her presence in any way.
As Linda slid onto the chair I checked “You sure you’re OK?” “Yeh, I’ll be fine!” and she started to unpack her food.
Now I know better than anyone how important food is to Linda so I knew her focus would be elsewhere. I made my goodbyes and left knowing that once people had eaten they would then be taken on to their next activities for the afternoon.
But I was uncomfortable at the same time… it didn’t seem right to leave her there.
And yet she seemed quite comfortable at the prospect. She wanted to be there, for me to leave. This was her environment, her place, her time, her friends and I was the intruder, the person out of place.
A taste of independent living for a learning disabled adult means something different I guess. They choose their friends and interact in different ways and without Big Brother (or Big Sister) looking over their shoulder!
Aviva Homemaker policy matures