23.04.19

There have been changes to our daughter’s team of PAs recently with a couple of new members now on board. They were highly recommended.  Finding the right people to support our daughter doesn’t come easy. We always have our eyes out for somebody who can offer intelligent care, is creative and empathetic and who will fit in, but are only too aware of the huge recruitment problem for carers in our neck of the woods, in the whole country. The pay is often so low for such important work and turnover is high. 

It’s time for another team meeting. We hold them every couple of months or so. It’s good to get together, catch up, share thoughts, ideas, knowledge, make plans. We can take a breath and look at the bigger picture. 

Our daughter gets excited as the PAs arrive and come to say hello to her. She doesn’t know who to focus on. So many people in one go. She is very happy to see everyone but it’s a bit overwhelming. She’s more of a one- or two-to-one kind of person. We leave her to watch a film as we repair to the kitchen, popping in and out to keep an eye on her. She likes her own company and is already engrossed in the unfolding story on the screen. She will call out when it’s finished.

We begin. Everyone has something to contribute. We take notes. It’s refreshing to hear such positive comments, see how the team members gel, get their individual perspectives on how things are going, both well and not so well. It’s clear that our daughter’s relationships with each of us is different and she responds in her own way accordingly. We explore current challenges and how to tackle them.

My partner broaches the subject of bathing and wonders if our girl needs to have a bath so often when a shower will do: think of our water consumption and how much we could save, the effect of so much water on our daughter’s skin, energy efficiency. We are conscious of such things in our house but have slightly different viewpoints. The PAs look at each other. But what about the pleasure bathing gives her, they ask, the joy of splashing around, the time for relaxation and quiet, the private time? And her skin is lovely. Oh, all right, says my partner, I give in.

A PA raises concerns about our daughter’s recent chewing behaviour and biting of her clothes. She hadn’t done it for a good while now but it’s started again. Not much yet, but still, too much. She is telling us something, but what? We look at possible reasons for this undoubted stress and ways to recognise and minimise triggers. We agree that it’s essential to persevere with the augmentative and alternative communication system that we introduced a few months ago. So far it seems to have raised more questions for us than given answers. It’s a whole language to learn in essence and requires time, consistency in approach and a ton of patience, but our girl is beginning to show interest and occasionally points at particular symbols in her book when she has something to say. A PA tells us that she had gestured to the ‘exciting” symbol as they came to the flying scene in one of her movies. She’s certain of it.

As the meeting finally draws to a close our daughter joins us. She sits at the table and eyes up the plate of biscuits on the table. Funnily enough she’s never liked biscuits, I say, their hard texture is not appealing to her and difficult to manage. Everybody nods sagely. But this time she picks one up and calmly eats it. She’s full of surprises.

Later my partner and I talk about the meeting. It’s gone well and we’re encouraged by everyone’s enthusiasm to do the very best they can for our girl. It’s gratifying that they so engaged and it’s obvious our daughter is happy with them. We feel lucky to have a great team – and long may it continue.