Christmas is coming…

magoo-scrooge…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…

Life has speeded up

There’s too much going on. I desperately want to find the pause button. I glimpsed it yesterday but it scurried away. I’m aware that the present tense is all that we have but I’m still unable to enjoy that because right now I can’t find the pause button. I glimpsed it yesterday but it scurried away. I’m aware that the present tense is all that we have but I’m still unable to enjoy that because right now there is too much going on and I can’t find the pause button.

Thanks to orpees for finding the image. Which isn’t actually a thing either.
Published in:  on October 17, 2008 at 3:54 pm Comments (12)

Living with a handicap: ten months on

There is a man who walks the roads around where I work. I see him sometimes around lunch hour. His left arm seems to be twisted, against his will, straining away from him. The thumb points outwards and the palm faces away and it looks like it hurts all the time.

For the longest time I’ve been too fearful to ask. Afraid to engage. Because it’s not just the hand. He has lots of problems. There’s the stoop. He’s virtually doubled up. And the shuffled limp. And the padded, bright yellow safety helmet that suggests a wrong softness within. It lets little wisps of old man white hair poke out here and there. Today in the slim breeze by the rail crossing those wisps seemed to reach for me and repel me at the same moment: Stay away. I’ll make you confront your good fortune and your cosy life and things might not ever be so comfortable again.

I should have stepped back.

But I am not myself these days. Changes happened back there somewhere. If the little boy in The Sixth Sense could see dead people, then I seem to have acquired the gift of seeing live ones. Ones who had hitherto been marginalised by the fit, healthy Leni Riefenstahl-sponsored part of my brain that refused to look directly – really, truly look – at anybody with an obvious mental or physical condition. What if they tore my comfort zone from around me? What if… what if I caught something from them? The cells of my fit body would recoil from the very thought of such grotesquerie.

Until Jacob.

Leni Riefenstahl my backside. God has no more love for my beautiful chromosomal symmetry than he does for my ‘damaged’ son’s awkward perfection. And something happened inside at a level that I don’t ever expect to understand. I saw beyond, to what the old man was. Not some sideshow freak, but a man with more difficulties than me.

The barrier was still down, the DART pulling out from the platform towards town. The helmet looked uncomfortable. I leaned down and saw the person in his eyes. I’ve been so foolish for so long. I smiled a smile that reflected, I hope, the love I felt for humanity.

‘How are you getting on today?’

‘Oh fuck off and ask me arse.’