Day 5, what a day. As you can see from our diary above it wasn’t the fun day we’d enjoyed for the last few days. We’ve noticed more and more that Noodle was having some pain and some of what we were observing in her behaviour suggested we needed to see a doctor so we did. Safe to say no worries, all is well now and we have some treatment and a plan. It did mean that writing this blog at the end of yesterday was just not going to happen. There was plenty to think about and reflect on though.
There is plenty written about pain, distress and AAC. Lots of ways to support people to talk about pain and to learn the language to talk abut pain. It’s possible, desirable, essential that people who use AAC can express pain and talk about it. The brilliant blog PrAACticalAAC had loads of ideas on the tag ‘pain’ here.
Noodle hasn’t yet learned how to talk about pain, or parts of her body so times when she is in pain are very challenging and we often need to involve healthcare professionals to check the ‘ususal suspects’, tummy, chest, throat and urine to help us find the cause. That’s what happened yesterday.
Now in theory I know that she will learn to talk about pain by us modelling for her, by learning that she can say ‘hurts’ or ‘help’ when she’s not well. In practice however when my little girl is in distress it’s the last thing I think about. Modelling in play, when out for a walk or reading a book comes really and naturally but to get out symbols (paper based power based whatever) does not feel intuitive at all. Of course we’re talking about it verbally all the time and saying the words, she’s not getting nothing, but the step to include AAC is challenging. We do have a document we update with her medical information and on reflection maybe keeping a core vocabulary page with the right vocabulary to expunge things and model would be a good idea. I’ll add it to the to-do list.
The other thing to reflect on from yesterday is medical care. We had a very good experience yesterday, things happened quickly and we were seen and treated well. Big thank you as ever to our superb NHS. I had one interesting conversation though. The doctor we saw had seen Noodle in the neo-natal unit when she was born and remembered her (that happens when someone has such a rare diagnosis). He asked ‘Does she have speech?’. First of all I misunderstood, at work I’m used to ‘speech’ just being shorthand for Speech and Language Therapy so I replied, ‘yes at school’! ‘I mean does she talk’ was his reply (obviously that’s what he meant!!). I replied ‘no’ and he asked ‘so how does she communicate?’, ‘like this’ I said as Noodle pulled my clothes to get me to her level and give me a hug. His reply ‘that must be very difficult’. I found this interaction interesting. Without a doubt having child who has complex communication needs is at times difficult but Noodle has only just in the last year started reaching to initiate hugs in this way. For me and our family this has been a thing to celebrate. It’s so curious how people have such different interpretations of exactly the same event, something we should all be mindful of I think.
So I’m not rating day 5, it would be unfair, it was a different king of day altogether and one that is familiar to parents of children with complex needs across the world. I’m writing this on the morning of day 6 so roll on the rest of today :).