Let him shout (at Trump or anyone else)

In the dim and not-so-distant past when it seemed impossible Obama would be replaced by a misogynist as the President of the USA, I watched a video of someone protesting at a Trump rally. The internet was full of footage of protestors at Trump rallies, and inevitably Trump insulting the protestors, but this was different. Different because the protestor was a 12 year old boy, who has cerebral palsy, who uses a wheelchair, who talks using a communication device.

JJ Holmes lives in America and had been following election coverage by using his iPad to search for Trump events, typing the words in using his nose. He knew Trump had mocked disabled people and eventually convinced his mum to take him to a Trump rally so he could protest against him. She warned him it might get ugly but he wanted to go anyway.

He pre-programmed phrases into his computer before they went, so that at the rally he could shout slogans like ‘Trump mocks the disabled’ and ‘Dump Trump’. He could play the messages through his communication device by pressing a button with his leg (there’s a brilliant video of him using the button here. As it wasn’t that loud, his mother and sister chanted along so he couldn’t be drowned out too easily.

After a bit the supporters surrounding them turned rowdy. Trump heckled JJ from the stage and told security to ‘Get them out’, and they were jostled out amidst JJ’s wheelchair being shoved and some pretty horrible things being said to all three of them.

So…

I mean obviously there’s much to be depressed about in this little anecdote, and that’s before we even knew Trump would become President.

But out of the murk I find inspiration: a 12 year old disabled boy convinced his mother to take him to a political rally to protest Trump’s attitude toward disabled people! He programmed chants in to his communication device!

I can’t tell you how proud I would be to have raised a son who was so politically aware and knew the power of protest. A boy who knew he was disabled and knew that was okay. Who knew that Donald J Trump (as JJ refers to him) was wrong to belittle disabled people. Who was brave enough to go to an adult event and make himself heard. Who was willing to be heckled and shoved to make his point.

I would be so proud of my son for learning to communicate with his nose and his leg, and having the patience and determination to make himself heard.

I am filled with admiration for a mother who took her 12 year old seriously, and facilitated his protest even though she knew it could get ugly. Who told journalists, ‘He’s not some puppet I wheeled in there. This was him – this was all him.’ I would be proud to be such a staunch ally. To treat communicating through a device as equal to talking (or shouting). And to have raised a daughter who wants to protest too.

I’m proud of a world where disabled people are helped by technology and supported to communicate when they can’t speak.

What the whole story relies on is JJ’s ability to shout (even if his device’s voice output isn’t quite loud enough to be heard above enthusiastic Trump supporters).

Sam has been using his eye-gaze computer for some time now and is beginning to create messages or questions within his communication software, or he uses the computer to read himself stories. We try to give him as much autonomy over the computer as possible (whilst hovering around, interfering, facilitating and modelling) so he can choose what he wants to do. When he chooses to use it for communication, we take the messages he says seriously.

By ‘says’ I mean that as he selects words within the communication software, they go in to a window at the top of the screen. When Sam goes to the ‘speak’ cell the computer says all the words out loud. When he is reading himself a story he selects the ‘speak’ cell and a paragraph of, for example, Mr Stink by David Walliams, will be read aloud by the computer.

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But the loudest volume of Sam’s computer isn’t that loud. He can hear it as he is quite close, but you can’t really hear it if you are across the room, and you definitely can’t hear it if Eli or Stella are squawking. So Sam’s speech and language therapist recently gave us a speaker to sit on top of the laptop, the volume of which can be controlled within the communication software. It can be turned up really loud, because if you are going to give an AAC user the opportunity to communicate as a neurotypical child would, you need to give them the ability to SHOUT if they want to. Or whisper. Or somewhere inbetween. Sam should be able to compete in volume with his siblings even if it’s not something I particularly relish the thought of.

In the same way that I ask Eli many, many times a day to please not shout, Sam should be able to be loud and annoying. There is a temptation to think of children like Sam as ‘good’ because they are relatively quiet and controllable, but part of being a child (any child) is being disruptive and protesting and Sam should have as many opportunities to do that as he has to be compliant. If we get to the point of Sam purposefully turning up the volume of his computer and shouting at us all, and me having to tell him to turn it down, that will be a good problem to have.

Meanwhile, JJ’s recovery from the Trump rally ordeal was helped by him meeting Obama the following day who was every bit as friendly as you would expect, crouching to his level, listening to JJ’s messages and shaking his hand.

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(Holmes family photo taken from Washington Post website)

According to a Clinton official, when he was told he was about to meet Obama,  ‘JJ jumps out of his seat and erupts into cheer . . . his smile almost bursting out of his face. His body overcome by light, when just the day before it almost succumbed to hate.’

Let’s keep heading toward the light, people. Let’s confront bullies and prejudice. Let’s give all our kids the ability to communicate, to shout and to protest. Let’s take them seriously and hope that one day we might meet Obama.

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Music: finding a beautiful voice

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Sam has just started music therapy. After an initial assessment with a charity over two years ago, we finally made it to the top of the waiting list. As the days get longer, we are seeing more and more of Croydon as we make our way to the purpose-built Nordoff Robbins centre. for weekly music sessions

We were a bit nervous. We know Sam likes music – one of the comments from his school report last year was that he loved choir, something we were really pleased about, not least because by definition choirs involve a lot of noise. Sam still has a reflex that causes him to physically startle at loud noises. He has found this upsetting in the past but is learning to manage the shock.

And we watch him enjoying music at home – one of the most reliable ways to make him laugh is for his uncle to play the piano while telling jokes, in the style of Flanders and Swann.

But all of that didn’t necessarily mean music therapy would go well, especially after a full day at school and then an hour in the car.

At our first session we were met by our friendly music therapist, who I will call C. She suggested that she take Sam off into the music room while I wait in the entrance room. What?! Let Sam be taken off into another room without me? With someone he (and I) has only just met? Are you nuts?! That has literally never happened before.

But of course I was too embarrassed to say all that – no-one wants to be a mollycoddling, helicopter parent unless absolutely necessary. Sam was totally relaxed. C seemed confident. So I said meekly, ‘Great, yes, I’ll just be here’, trying to portray a sense of calm and normality.

Then I sat in the waiting room, sending my husband texts saying things like ‘Sam’s in music therapy on his own! Nervous!’, praying that Sam didn’t puke on C. I was straining to hear what I could from the music room but I couldn’t hear any complaining, just a bit of distant guitar, then a drum, then some singing.

After half an hour he reappeared looking pleased with himself and C said it had gone really well. I was even more chuffed than Sam.

Our second visit followed the same pattern, only this time at the end of the session I heard Sam crying from the other room and when he came through the door he was crying sad, hot tears. C said he had got upset when she sang a goodbye song. As we chatted he calmed down a bit, but each time we talked about leaving or saying goodbye the tears started again. And on the way home he sobbed on and off for twenty minutes, which is really unusual for him. He gets upset and he cries sometimes, but almost never for that long.

This week we went for our third session and the same thing happened at the end, but with less dramatic sobs and a quicker recovery. C is taking it all in her stride, but I started to worry that Sam just doesn’t like music. It seems unlikely since he’s happy when we arrive and enjoys music at school, but maybe…

I was talking to another music therapist while waiting at the centre, and he said it was lovely that C and Sam were getting on so well. We had a conversation about how much Sam ‘talks’ i.e. not at all, but he makes all sorts of noises that we can interpret as happy, sad, annoyed or bored. He said it was lovely to hear Sam singing with C, and that Sam has a ‘beautiful melodic voice’, which struck me as an incredibly accurate and particularly lovely thing to say about a child who can’t use his voice easily.

I’m hoping Sam’s approach to music might be like his acclimatisation to the school bus; he started cheerful, then found it all too much, then settled into happy contentment.

I’m pretty sure he really likes C and her music, and is just really upset that every week it finishes after only half an hour. In the absence of Sam being able to tell me, I’m keeping my fingers crossed. Maybe he is finding his voice.