I had a call yesterday from Amy's community paediatrician - the doctor who looks at all the different bits of Amy's care, reviews her progress and is our first port of call if we are concerned about something. (She was calling to tell me that last week's EEG was abnormal - not just usual-Rett-abnormal, but showing that Amy is having epileptic seizures. But that's not really what this post is about: I am at once bored and overwhelmed with the whole subject of seizures.)
Dr L went on to tell me that she'd been in to see Amy in school recently. She had arrived shortly before lunch, when Amy was doing her usual impatient yelling. She said she crouched down to chat to her, found her interested and responsive, and said to her, "Amy, why are you screaming? You're a big girl! You're too big to scream!" And my little weasel-girl had laughed and stopped.
Dr L thought this was fascinating: because, she told me, it confirmed to her what I've been telling her for years, that Amy understands what's being said. (I don't think she was sceptical, exactly, but she clearly had a bit of a 'moment' at seeing it for herself.) And I thought it was fascinating because it confirms my strong suspicion that Amy has some control over the yelling and can choose not to do it. Dr L says maybe Amy thinks that screaming is just what she 'does'. Maybe so, but I still live in hope that we will help her find a way of expressing herself less ear-shatteringly.
Sad about the seizures, but WOW, way to go Amy, and yes, screaming isn't a good way to communicate, because it is not specific. You need a kick-ass SLT to give you a way to say what you want everyone to know!
ReplyDeleteThing is, Sally-Ann, in this scenario we know exactly what she's saying: she's saying "I want my lunch!" If she was calm enough to use her PODD book at this point, she'd say the same. She has her lunch at exactly the same time every day at school, she knows it's coming - but still, she yells with impatience most days. It would be very nice to find a way of helping her not do that. I know it's just what she 'does', but it's hard to relax around her when she does it, even if you're used to it - so even though she is expressing herself, I still want her to stop!
DeleteWe've had a few of these experiences with different things...it's amazing. Here's to being hopeful about less screaming in your future!!
ReplyDeleteI'm sorry to hear about the seizures,and the screaming - I don't know if realising that she is in control of it makes it easier to cope with or worse! BUT I love the story about the doctor having a momment of realisation with Amy! I love times like this when people see what we see and form that connection with Jessica. Even if it is just fleeting, it goes a long way to convincing those who are sceptical of how much Jessica understands, or re-inforcing someones relationship with Jessica if they already believe! But I hope Amy finds another way to communicate her impatience with you soon!
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