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.

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.

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.

Another idiot with a column

There we were, meself and the youngest the other day. Reading. And who should we chance upon but the lovely Minette Marin. She writes with the Times (the posh English one) and knows a thing or two about a thing or two. It’s worth having a look at her considered opinion of people with Down syndrome here. Worthwhile because she comes at it fresh from the novel viewpoint of not having Down syndrome herself, the staggeringly lucky gal. Anyway, I read her opinion and, bless her little head (below), she has it sussed. Not only that but she is funny. I’ve read it a couple of times now because when you get belly-aching humour like this:

I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome.

well what else is there to do but laugh along and spread the infectious fun? Oh she be a hoot and no mistake, Auntie Gretchen. I probably wouldn’t blog about it at all, being drawn to the lazier end of the pool myself, but something this good deserves a wider audience in my community. I mean, the Times must have a paltry couple of million online readers, and more than anything that prompted me to help spread the message that Sharon started. She’s done a sight more on it than ole lazybones here will, but if even three or four hundred thousand of my regular readers can in turn blog about it, and the inherent humour in nuggets like:

Sad observations over decades have convinced me: a damaged baby is a damaged family, even now

well then Mimette’s brilliance can only help people like me and lots of you too. Now she has obviously not done this in some kind of fluffy, schmaltzy way either. She’s had people not like her for her opinions! I know you will be as shocked as I was. Listen to this:

There have been vicious attacks on me in the blogosphere by disability-lobby extremists.

How can people be so cruel? And I’ll wager that some of those vicious attacks were by scum in heavy tubular wheelchairs with those sticky-outy bits for their feet, BANGING RIGHT INTO POOR MINUETTE’S SHINS! I’m not going to let that kind of nonsense go unanswered, by God. Extremists! Attacking her! In the blogosphere! Of all places!! I got a basketball once in fifth year on the upper courts, whummpp right in the blogosphere, and I can tell you that even the memory of it now, seventy years later, brings tears to my eye. Bloody disability-lobby extremists. Nevertheless, sticks and stones and all that, but Minewt’s humour is unflappable. She bounces right back with a pithy creaser to leave not a dry seat in the house:

My point of view does not make me a heartless eugenicist.

Well, it made me laugh anyway. I can’t help it if you lot are slow, can I? But enough of the single entendres. It’s when she gets to the dirty talk that Minitwit really goes for broke. It also reveals the true genius of this towering colossus of forward thought. She sees things, she goes places that you and I, mental cripples that we are, cannot even dream about. And that’s the genius bit: she goes to these uncomfortable places, thinks these uncomfortable thoughts, and solves these uncomfortable problems for us. I’m beginning to think we should start to worship Mini-god instead of just laugh at her.

What happens when the Down’s child becomes a teenager, interested in how he or she looks and keen to discover love and sex? It is all too predictable – a growing sense of sexual rejection. Any babies born will be taken away, probably rightly. It is heartrending.

Always back to the nookie. It’s almost as if she’s reaching back into my own teenage years growing up in rural Catholic Ireland and going to an all-boys school. And I can tell you, it can take months to get over that growing sense of sexual rejection. And somehow, she predicted it. In teenagers. The vision!  (She didn’t really say that bit about the babies being taken away. I, like, totally made that up. Except I didn’t. And she, uh, did. Quite rightly, of course.)

Ultimately though, and here’s what you all should’ve seen coming, it’s about the economy, stupid! Them Downs babies, as designer genes go, are reahhly, reahhhally expensive. Downer. Sorry for mentioning the r-word, but Mine-ette (French for little landmine, non, Nan P?) said it first:

At a time of recession, with social services understaffed and underfunded, there will be little money for social care. Even now there is nowhere near enough money to help everyone with learning disabilities lead a full and semi-independent life.

Of course it’s not all incisive cut-to-the-heart-of-it candour from our heroine. There’s the other, tiresome side of it. The pansies bloom too whenever Mintybreath’s sun shines. Dominic Lawson in the Independent warbles on, having a go at those poor, defenceless UK doctors who are trying their best – in difficult conditions, let me add, in difficult conditions – to save everyone from the scourge of Down syndrome. Sigh. We just have to have the lily-livered softies, don’t we? And reactionary nitwits like India Knight (name like that she must be a hippie, right?) are trying to bring love into the equation, like that’ll make up for the cost of having a relative with Downs. Puhleeze!

Anyway, I hope you’ll join my jolly crusade in trying to stamp this nonsense out. If you read through the responses to Minivan’s original article you’ll find lots of the ‘Well done, bravo, needed saying’ comments in there. They’re the ones who get it. The ones who remember when a mongoloid’s place was in the loft, not out affronting right-thinking people on the bus, for the love of Jesus! These sandal-wearing bloody Special Olympics crowd get right on my tits! So we’ll start the great row-back right now. Who’s with me?

Will we tell him or will you, Minette?

Postscript: Thanks Sharon for keeping an eye out. And you’d think I’d lighten up and get with this lovely seasonal WordPress snowfall, but it seems all the gobshites* come out in December too. So a kinda semi-mumbled apology for the heavy post, maan. Next one will have Bob Hope and Lou Abbot as guest bloggers. Or was it Lou Costello. Eh, we’ll dig up something.

*Dear non-Irish readers, you have just been initiated into Irish English’s greatest little gem of an insult. The harder you can stress the gob part of gobshite, the more you belittle your intended insultee. My Christmas gift to you. Use sparingly for maximum effect.

Christmas is coming…

…and I’m buggered if I’m devoting another single square centimeter of floorspace to cheap, plastic moulded toys that take up acres of room. Pesky kids. I need that space for my friend Sarah’s stuffed moose gift.

So here’s what we’re doing, and I hope it works.

We’ve started asking friends and family not to buy gifts of toys for Jacob this Christmas. Instead we’re going to be slightly less Christmassy and just say ‘GIVE US YOUR MONEY!’ Ok, not quite that chilly about it. But a SMALL donation in lieu of the usual €30/40/50 Fisher Price or VTech thingie, which we’ll then put towards more appropriate gifts.

It’s not that we don’t appreciate people’s intentions: we truly do, but we also appreciate how hard it is to get gifts for anybody, let alone someone whose needs are slightly different and not best met by off-the-shelf items from Argos or Smyths or Tommy’s World of Wonder. I’m not slamming Fisher Price or any other brands either. They can have good toys too. You can find good stuff in these stores, but you’ll have to look harder and think about it more, and anyway there’s better value to be had elsewhere. (And PLEASE don’t be fooled if the name of the shop happens to be the Early Learning Centre – they’re pretty much a toy store with lots of useless junk too, just with a clever name to make you think otherwise.)

The good news is that there are dedicated websites and stores that provide appropriate developmental toys and learning aids for kids ‘suffering’ with Down Syndrome (ha ha – thanks Cathal’s mam for pointing out the sufferance from the mainstream media on that particular phrase 🙂 )

Thinking Toys

Dee recently went to a Toy Show in St Michael’s House and was very impressed by what she saw from these guys. They’re called Thinking Toys and they’re based in Co. Clare, quite near Limerick. It’s run by a couple who are very much coming at this from a position of inside knowledge, and it’s worth doing a little bit of reading. It’s a huge shame that delivery is Ireland only, but I’d encourage you if you’re outside Ireland to get creative. If you want it you will get it. Within Ireland you can order from the website and – even better – they’re happy to come to you and do the show and tell thing.

We will also gladly demonstrate and display our products anywhere in Ireland to groups including therapists, teachers and support groups. All you have to Do is Ask and we will be there.

Isn’t that nice? It’s nice too if you want to include someone in the whole gift buying thing that you can do so and they have less chance to make a complete balls-up of it. Or you can just be Scrooges like us, tell everyone you’ll do it yourself, take the money and then spend it on Cartier watches, a yacht in Barbados and all the After Eight mints and Ferrero Rocher than one classy and well rounded couple with a reinforced sofa can possibly eat.

On a separate note, Cathal’s Mam also posted an excellent series of reports on a seminar held by Down Syndrome Dublin recently. Anybody who missed it or couldn’t make it anyway can still get some excellent advice thanks to Cathal’s ould wan’s note taking 🙂 It’s in two parts and you can access the first here, and the second one here. Well done Cathal’s mammy. It’s got great information on the superb work being done by Joan Murphy, the Clinical Nurse Specialist in Tallaght Hospital. Spread the links, anyone who can…