Friday, 3 April 2009

Rambling and Reflecting to Myself

Today was a good day. A long and interesting day, but definitely good.

I spent most of the day in Leicester at a Royal College of Speech and Language Therapists (RCSLT) study day. This panned out better than I expected. The talks were on bilingualism (my dissertation topic), 'dynamic assessment' (never heard of this before so it was new and interesting, SLT with autistic children (see below) and then some advice about starting new jobs (always helpful).

The 'autism' talk had a funny effect on me. The speaker was brilliant- so engaging and to the point, yet what got me was her compassion for the parents of the children she sees. Obviously this is a little bit close to home, but when Ben was diagnosed I was only young myself really, I didn't fully understand and I had no concept of developmental norms- no idea what kids should be doing at what age- he was the only child I'd seen develop from birth. But my parents did know what they were expecting, and that's not quite what they got. (Don't get me wrong, I love Ben to bits and wouldn't change him for the world, he's growing up to be a fine young man and I'm proud of him, though not looking forward to the day he grows taller than me!)

So this lady, Gina, described her process of assessment and therapy, but at every stage advocating the feelings of the parents. She explained what we label 'denial' in the early stages is actually just a tired anxious parent clinging on to a thread of hope for their beautiful child to be able to speak one day (she sees children with quite severe autism). She described a disaster scenario in which the child comes into the clinic room, screams for the entire session and destroys everything in sight, but that it is most important, not to clear the clinic room but to show understanding to the parents, let them know that we know bad days happen, but we're willing to try again, to avoid such shame and embarrassment that the parent daren't come back. I can't remember other specifics but all the way through there was this consideration, this compassion, for the distraught, concerned and regularly teetering 'on-the-edge' group.

I feel for parents who once had a sense of order, of control over their lives, but now find themselves living in chaos. The house is a mess because every time they tidy up, something else is 'explored' all over the floor. Every time they clean, a sticky drink is poured out because it makes a nice noise. And then, out of the blue, there is a tantrum that would have the neighbours talking about 'what goes on nextdoor' because a routine they didn't even know existed, has been disrupted. And all the while this beautiful child that they love with all their hearts and had such huge dreams for, won't talk, won't respond, won't even look at them. It is heartbreaking, you do need to hold onto hope.

I'm not relating all of the above to the experiences of my family at all, but that's what pricked my ears and what has led me to hear of these situations in other families. I realise I'm just emphasising one small aspect of a huge issue here, but it's really just so I can work out what I think in my own head, and this is the bit that caught me. She also did some wonderful demonstrations of how to engage a child's attention and develop meaningful communication, and made another interesting point about the common inability of autistic people to forget experiences, positive or negative. Hm.

And the bilingualism talk, ah, I love it. I'm such a wannabe, hehe. I spent the evening on Monday with some friends who are originally from Pakistan and they were talking about the culture and the differences between there and here and all of a sudden I felt so...monolingual and one-dimensional! There's such a richness and depth that comes from merging cultures and being able to function across them, it's fascinating.


My train back to Leeds took me through Sheffield, and I felt it would be a sin to get off a train in Sheffield and not tell Tilley! It worked out great in the end, we went for a lovely meal in HaHa, stopped by her flat for about 5 minutes and then I came home [leaving all my wonderful notes and the green tea & cranberry teabag Tilley had given me on the train...gutted :( ] and here we are!

A long day. An interesting day. But definately good.

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