28.03.18

The day I was introduced to a friend’s step daughter over 30 years ago is etched deeply in my mind. She was profoundly disabled and had a rare genetic condition. I had never met anybody like her before. I didn’t know how to be, how to communicate in a meaningful way with her, what to say. I guess it was all about me.

In the event, I sat down next to her, told her my name and chatted about the day. It was her birthday. There were lots of cards dotted about the room and the obligatory cake and candles took centre place on the table. She needed help with the cake. Her dad blew out the candles for her. 

It was clear she was part of a very loving group of friends and family and her needs were attended to by her parents in a very unassuming and unobtrusive way. Half way through the evening I realised I had forgotten the anxiety I had initially felt and allowed myself to just go with the flow and accept this young girl’s difference. There was no expectation on me to do otherwise it seemed.

Little did I know then that a few years later I would be the parent of a severely disabled daughter with a rare genetic condition. Or that there would be many people in our life, particularly in the early days, who wouldn’t know how to be with her or what to say. As we moved into the world of special needs, some friends inevitably fell by the wayside and we found ourselves relying more and more on professionals to guide us.

However, experience has taught my partner and I to be wary of workers in the field who think they know everything, know best, but treat all their charges the same. They make us anxious. Over the years we’ve come across some exceptional people who’ve been involved in our daughter’s care, who’ve afforded her the respect and dignity she deserves, who’ve gone out of their way for her, who’ve really enhanced the quality of her life. 

We’ve met some horrors too: carers who were lazy and sat her in front of the TV all day while they played on their phones, carers who were over confident, arrogant and insensitive, carers who were inflexible and unprepared to look at other ways of doing things – and carers who talked down to our daughter as if she was a baby, or as if she wasn’t there.

The newest member of the team came round to our house the other evening to spend time with our daughter and shadow one of her PAs. We were going out. When she arrived she told us she was excited at the prospect of getting to know our girl and working with her. She remembered meeting her at a local day centre a few years ago but hadn’t actively supported her on a 1:1 basis then.

She came highly recommended to us and was clearly very well versed in the importance of the person-centred approach to care and support that we feel is so crucial to our daughter’s health and well-being. 

We knew she had been trained up to the hilt in all the relevant areas. On our first meeting we’d found her to have a good sense of fun. She was observant and attentive without being overbearing. She seemed kind.

But still. We wondered how she would actually be with our girl in her own home.  Our daughter knows her own mind, who she likes. She’ll turn her back or zone out if she’s not sure.

When I drove the new PA home after her shift she reported that all had gone well and she felt she and our daughter had already made a connection. But she said it will take time for them to really get to know each other and it’s early days. I really appreciated that. It was absolutely the right thing to say.