No need for that language

I was out meeting two friends a couple of weeks ago in Harry Byrne’s in Killester. Midweek, following an evening class I give to advertising students. Quiet couple of pints. I got to telling them the story of a recent loss.
One of my students had ended his life a week earlier. He was 22, and seemed to have everything to live for, but he took things in a different direction. I was baffled, and trying to understand what I could have done, or where I could’ve stepped in and made any kind of difference to the outcome. As I went to the toilet I was, to tell the truth, a bit angry with him. Maybe with myself too, for not spotting what became too obvious too late.
The toilet was empty, and as I stood at the urinal I surprised myself by shouting ‘Fuck you anyway, Mark’ out loud. Then a voice from the cubicle. ‘No need for that language.’ Damn. Not as alone as I thought. I washed my hands and mumbled something back about them not knowing what I really meant. The door opened, and a man in his mid, maybe late twenties stood there. He had Down syndrome.
And he was absolutely right. There was no need for that language.
Rest in peace, Mark.
Image

Snapped this little guy on my mum’s front yard at the start of April. In the most inhospitable crack between the front wall and concrete yard. Life keeps pushing on.

To the annoying per-pubescent kid from earlier today

And the pushy one

And the one who looked sullen all day

And the one with the all-messed-up hipster hair

And the fat one

And the one who looked too skinny

And the one who threw the tantrum in the gift shop

And the one on the zip wire who was so much less nervous than me

And the one with the annoying voice

And the misguided Man United fan

And the hyper one

And the graceful one

And the one with the posh voice

And the one with the funny walk

And all the others I met earlier today

Keep on being wonderful

Down syndrome couldn’t make you all the same even if it wanted to

Mr Tayto has been an icon for generations of Irish kids, since the mid 50s. Thanks to Tayto Park for throwing the doors open and giving all proceeds to Down Syndrome Ireland on Saturday 15th September. It was a meaningful gesture, and a great opportunity for everybody to be normal.

A lesson in love from Down syndrome, a lesson in emotional distance regarding ASD

Two special needs stories, related, but at such opposite ends of the spectrum of acceptance that it’s hard to think they were published within days of each other, one in The Irish Examiner and the other in The Irish Times.

Regarding the first. Some of my friends with kids diagnosed with autism are furious these days and nights over a particularly thoughtless and unlovely piece of writing in the Irish Examiner by a man called Tony Humphreys. I don’t blame them. It casts them as cold parents, whose emotional response to their kids’ difficulties actually makes everything worse. I won’t add to the debate, especially since so many of these people, who I know, admire and very much consider friends, have done a sterling job in throwing cold water on  his article, and questioning the stance of The Irish Examiner in publishing it.

You can find Sharon’s take here.

This is Lisa’s take on it.

Bock.

Siobhan O’Neill guest blogs about it on Suzy’s Maman Poulet.

There’s a ton more too, and it demonstrates just how important it is that if you have a reputation and a following, as Tony Humphreys does, it behoves you to have your information clinically accurate or else you will at the very least offend people.

And then there’s this, from today’s Irish Times, written by another Tony.

Tony Bates is founding director of Headstrong, The National Centre for Youth Mental Health. It couldn’t get much further from the coldness of that Humphreys analysis of where autie parents are going wrong. I’m not going to edit it, because I think it’s worth reading the entire piece. It gets a little sentimental (Scratch that, it gets a whole LOT sentimental!) but go with it. Because as the young man said, “Ah love. It’s what bonds us all.”

I think Mr Humphreys here probably knows that, and I hope he can recalibrate the part of his thinking that fails to recognise that most parents of kids with ASD do too.

A CURIOUS thing happened to me on the Luas recently. I had been standing since boarding the tram at Heuston, but when we reached the Jervis Street stop, a seat freed up. I sat down, grateful for the rest. I was happily window gazing, when I heard a loud voice from somewhere behind me asking for “a two euro piece”. I noticed a look of disgust on the face of a woman in a nearby seat, so I turned to see what was up.

A young man with Down syndrome was making his way through the packed carriage. His beautiful open face looked distressed. He persisted in asking everyone around him for two euro, mumbling that he needed it for the bus home. I dug a coin from my coat pocket, reached back and handed it to him. Job done; back to gazing out the window.

A moment or two later, this same young man sat down in the seat beside me and put his head in his hands. Apropos of nothing at all, he blurted: “How do you stop feelin’ annoyed with someone?” This guy clearly preferred to skip small talk.

I asked him what had him so annoyed, but he wasn’t happy to talk about it. “Just someone who did something a month ago that made me mad.” And then he repeated his question to me with an even greater sense of urgency: “How do you stop feeling mad at someone?”

I asked him what it’s like to walk around holding onto anger. He remained bent over, head in hands, distressed by a feeling that wouldn’t leave. And he said: “It hurts.”

We had an audience who were monitoring our conversation with interest. Maybe this boy wasn’t alone in walking around with unresolved anger. Maybe these onlookers were asking themselves the same question: “How do I let go of my anger?”

I wasn’t sure at all what to say to this young man, but he was growing on me by the minute. I offered him a lame cliché – “Maybe you need to forgive him” – but he saw through this immediately. “No,” he said. “Tried that, didn’t work.” That put me in my place.

I remembered something about people with Down syndrome: they are more connected to their heart than most of us. So I took a different tack and suggested: “Maybe you need to love him.” For the first time since he had sat down he lifted his head from his hands, sat up, and smiled. “Ah love,” he proclaimed loudly. “It’s what bonds us all.” And he threw his arms out in front of him.

He introduced himself to me and shook my hand. The woman who had been turning her eyes to heaven only moments before, leaned over and kindly offered him her best advice: “You need to pray for him too.” Another woman sitting behind her added: “You know, no matter how bad things might be for you, there is always someone else who feels even worse.”

The thought briefly crossed my mind that this second woman – whose face revealed her to be no stranger to pain – had probably tried to console herself with this truth many times.

My new friend responded warmly to each of them, thanked them and shook their hands. The tense atmosphere that had hung in the air vanished. There we now were, all of us, no longer strangers, crowded together at the door waiting to disembark, joking about keeping our balance as the tram curved around Busáras.

In the space of four Luas stops, something had shifted for each of us. We had been wary strangers at Jervis, but smiling friends when we reached Connolly. What had made the difference? Was it the inspired advice that we had given this young man? I suspect not.

I think it was more what he had done for us. His lack of pretence, his direct openness, had disarmed us. He had allowed us for a moment to step out from behind our separate selves and experience a simple but powerful connection with one another.

It occurred to me that this young man with his so-called disability, who made a carriage cringe, was freer and probably healthier than most of us that day. While we lived mostly in our heads, our hearts hidden behind a fear of disapproval, this young man lived from his heart. And even when it hurt, he didn’t try to hide it.

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Aimee Richardson: Punky Down syndrome media star

Who  needs imaginary friends? Check out the wonderful Aimee Richardson, a busy young woman who’s even got a cartoon character, Punky. (Well ok, Punky was at one time only imaginary, and lived in the imagination of Lindsay Jane Sedgwick, but she’s become pretty real in the meantime.)

Aimee, the voice of Punky

Punky, the face of Aimee

Aimee’s multi-talented, inspirational and breaking down barriers just because she’s being herself and doing normal things in normal land amongst the normals. That’s not disparaging – you know what I mean.

She was interviewed by Brendan O’Connor for The Saturday Show last night. Overlook the cringiest faux pas of the show’s host (dad to a Ds baby, btw), who’s got four left feet at times, but give him credit for getting Aimee on primetime TV. Ignore the fact that his questions are too full on and he doesn’t really give her a chance, but revel in her quirkier little orneryisms. She’s raising the bar for all of us; an inspiration for what anyone with Down syndrome can achieve.

Zip forward to 23 mins approximately to get to her segment. You’ll find it – for as long as the TV channel holds it online – here. And below is a recent article by Aimee from The Sunday Times.

 

 

A Dishwasher Service Engineer calls

‘I’ll tell you what kids, I wasn’t crazy about the rinse cycle
but the drying programme works like gangbusters.’

‘I’m going again. I’m going again!
Now where’d I leave the damn keys of this deathtrap?’

* Do not try this at home. Who needs mopping up two gallons of soapy water from the kitchen floor? That’s what neighbours’ kitchens are for.