Grandparents are parents too!

DSI, assisted by a crack team of highly trained commandos, will be storming the Gresham Hotel in Dublin on January 14th with an Information Day for grandparents of kids with Down Syndrome. It’ll be like the SAS storming the Iranian Embassy in London in 1980. Only with possibly less balaclavas. And more cake. But the crack commando unit will be there.

Obviously there’s a steep curve of learning for new parents dealing with Down syndrome. Not much thought is left over, at least initially, for the parents’ parents, who are struggling to cope with the information from an entirely different perspective. Possibly they feel slightly more useless, although I don’t think anyone could’ve out-uselessed how useless I felt when I first was coming to terms with my new status as a Downs dad.

Here are the details, with thanks to Nan P, most secret, deep-cover grandmére of all.

DOWN SYNDROME IRELAND GRANDPARENTS INFORMATION DAY

14th January 2009, 10.30am – 3.30pm
The Trinity Room.
The Gresham Hotel,
O’Connell St,
Dublin 1.

Crack commandos:
May Gannon – Counsellor.
Joan Murphy – Clinical Co-ordinator.
Grainne Murphy – Independence Officer.
Pascale Claes – Grandmother.

ALL GRANDPARENTS WHO HAVE A GRANDCHILD WITH DOWN SYNDROME ARE WELCOME.

On yer bike! Phone the National Office on 01 4266500
or email info@downsyndrome.ie to confirm your place! Vroom vroom!

granny_rider

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‘My first reaction: what did I do wrong?’

jcmcg_1

I’ve been watching Scrubs for so long now that I think Perry Cox is real. His snippy, smartarse comments are the stuff of legend. So I was surprised today to discover that the actual Perry Cox, actor John C McGinley, is in my club. He’s a downsdad! Nobody told me. (I mean why should they, but in this day and age of instant, total media intrusion, I kinda figured…) More on McGinley here… read on

The Special Needs Handbook needs authors!

Helen McGrath-Doherty is not someone I know anything about, except for the fact that she’s doing something terribly decent. The Special Needs Handbook is being compiled by her, and others I presume, to offer practical help, advice and tips to parents, carers and professionals.

She’s cleverly getting everyone else to write it – and that means you too. Here’s what she says:

We are compiling all the good ideas and practical solutions to everyday problems that parents and therapists have tried and tested over the years. Once compiled, the book will be made available free over the internet, with the possibility of publishing it (not for profit) and making it available through shops.

All contributors whose ideas are original and published in the book will be sent a free copy – so be sure to include your name and address along with the tip or tips you send in.

Imagine. Offering it for free. Of all the jar-headed ideas I’ve come across in this festive season of giving cards to every cashier you meet, this one really beats Banagher.

But seriously, a lot of you have so much accumulated knowledge on this subject that we’re bound to get somebody published, right?

So the competition is on. First one in buys the drinks.

My starter: On those days when you’re feeling a little bit conscious of all the looks your precious one may be getting from the normals, pull a face like this. It gives everyone a different focus.

Well then make your own suggestions if you’re so smart and good looking. Here’s the address for your suggestions:

helen@specialneedshandbook.com.

flyer

Ok, so the cover isn’t exactly epilepsy-friendly, but I’m not sure this is how it’ll end up. Anyway, shut up. It’s going to be free.

PS I found all this at India Knight’s excellent blog Isn’t she talking yet? at Times Online. Her daughter has Di George syndrome, also a chromosomal abnormality condition, and she uses her journalist profile to help special needs issues get heard. And she has a great sharp tongue too.

Another idiot with a column

looks-like-we-got-us-some-readersThere 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:

columnist_marrin_25526aI 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:

columnist_marrin_25526aSad 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:

columnist_marrin_25526aThere 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:

columnist_marrin_25526aMy 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.

columnist_marrin_25526aWhat 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:

columnist_marrin_25526aAt 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?

jacob1Will 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.