Respite 2

I had a headache last night.  It felt like someone was gently tapping on my meninges with an ice pick, just above my left eyebrow.  I don’t get migraines very often, probably because the usual trigger for my headache is a reduction in stress. And since I am stressed pretty much all of the time, I stay largely headache-free.  So why yesterday?  Because yesterday we had some respite. Following a brief visit last week, S came to help. We have agreed that she will come once a week for three hours to give us some home-based respite.  To be honest, I wasn’t sure how this would work.  S’s job is to support and care for R while the rest of us get on with our usual after-school activities.  I thought that it might be awkward.  I thought that she might be (or feel) in the way.  I wasn’t altogether convinced that it would be much help.  But it was. S read R stories, fed her a snack, tried to persuade her to use her Tobii and followed her around the house as she wandered from room to room, keeping her safe.  S did everything that I do while I tidy the kitchen, make the dinner, encourage EB to start her homework, help EB with her homework, separate F from his phone and do the laundry. Best of all, because S fed R her dinner, for the very first time since she was a baby, last night we sat down to eat together. R was initially a bit unsure.  But she quickly warmed to S and it was clear that she was rather enjoying the attention. S helped get R ready for bed and read her a bedtime story before she left.  EB found the whole thing rather thrilling.  She says it’s like having a nanny.  I am rather thrilled too.  Just not about the headache.

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I want to be a scientist

R has just had her annual review meeting at school.  This was one of the best of these meetings that I can remember.  Everyone who was at the meeting now agrees that R is cognitively able and can learn.  No-one mentioned the need for a sensory curriculum (hallelujah). The meeting concentrated instead on how the school can best support her in her learning (*actual learning*).  Her teacher reported that R refuses to use her Tobii Eye Gaze in school.  Or more accurately, that she uses it only to tell her teacher that she wants to do something else or quits out of the programmes altogether (thereby demonstrating to everyone that she knows perfectly well how to use it).  This is frustrating for her teachers and for us.

EB has a chemistry test tomorrow.  She remembered about the test half an hour before we had to leave for gymnastics training. So, as EB ate her dinner, I quizzed her on the material.  R was interested as she often is when we are doing homework like this.  A few weeks ago, for example, EB had a history test.  The topic was “The Triangular Trade Route“.  R appeared to be listening but as I repeated the questions over and over again she began to get agitated.  EB was sure that R wanted a turn.  I asked her about Glasgow’s Tobacco Lords giving her two options to choose from each time.  She got every question right.

Tonight, I thought that I’d try again.  We had been talking about the three states of matter – solid, liquid and gas – and their properties.  I quizzed her on these. She had been listening.  As an experiment, I asked her a question on the periodic table that we had touched on but not discussed in detail.  She looked at both options, looked at me and walked off.

EB was very impressed.  She asked R if she wanted to be a teacher when she grew up.  R looked aghast and “said” no.  Then EB asked if she wanted to be a scientist.  R “said” yes.

Tonight, R and I told her Dad about the chemistry test.  R answered the questions again. I said to her Dad that R wanted to be a scientist and then I told R about Stephen Hawking.  I told her that he is unable to talk or to use his hands but communicates using his Tobii.  I told her that he is one of the most famous scientists in the world.  I told her that she could become a scientist but she would have to use her Tobii too.  And R just kept on pressing the “no” button on her Yes/No talker.

I don’t know why I’ve never done this before but I suddenly had the idea of showing R a video of Stephen Hawking.  I showed her his TED talk on my phone.  R looked amazed; in fact, she nearly fell off her seat.  She was squealing and grabbing at the phone in excitement.  And it occurred to me then that R really hadn’t, until that point, grasped the fact that the Tobii could allow her to say, well, anything.

I don’t doubt that tomorrow R won’t want to be a scientist.  She will want to be an artist or a writer or a ballet dancer.  It doesn’t matter.  What matters is that R might just be beginning to see the point of the device that she has, up until now, ignored in our living room.

 

Invisible Disability 2

R’s new wheelchair has arrived.  R’s colour choices (pink and orange) turned out great and the chair looks very cute.  R is very pleased with it.

R’s recent poor run of health has meant that I have been using the chair perhaps more than I would have expected. And I have made a curious discovery.  People are much nicer to us with R in the chair than than they were before.

Funnily enough, by and large, I hadn’t really noticed that people weren’t always being nice. It’s true that the week before the wheelchair arrived, I was out with R in her buggy, when a man stopped me to tell me that she was far too big to be in one.  It’s also true that there were always those people who tutted and stared when R was being noisy in public places.

But most people weren’t like that.  It’s just that, incredible as it seems, they apparently didn’t recognise R’s disability.  Introduce a wheelchair and people smile and chat to R, they hold open doors and offer help.  Introduce a wheelchair and there are no raised eyebrows when we park in a disabled parking space or use the disabled toilets.  It’s almost like the wheelchair is needed to validate R’s disability.

I met a couple of friends, M and J, in the supermarket cafe right next to R’s school before I picked her up this afternoon.  I discussed this shift in behaviour with my friends (who, like me, are mums to daughters with disabilities). “People are less aware of the presentation of disability than they should be.  Disability just isn’t as visible in the community as it should be.”  As I ranted, J watched a scene play out behind me.  A woman entered the cafe with a small boy.  The boy was agitated and crying when he arrived.  The woman set about calming him down and then together they quietly ate a snack.  On the table the woman had set up a card.  The card said that they were from the nursery attached to R’s school, that this was a “social snack time” and that if anyone wanted to ask about what they were doing they could.  And no-one in the cafe fussed and no-one in the cafe tutted.  What a brilliant way to raise awareness.