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.

Derval O’Rourke: ordinary, everyday superwoman

It’s not every day you get to mix it up with one of the fastest women on the planet but that’s what Jacob was doing yesterday. Ok, she may be an Olympian, a world champion hurdler (Gold at the World Indoor Championships over 60 metres, among a whole stack of other honours) but Derval O’Rourke, Cork speedster extraordinaire, still found time to chat to our Jacob. Well, it’s not every day she gets to mix it up with one of the slickest guys on the planet, is it? Who can blame her?

Jacob and I were just taking a breather from the bowling lanes and the heady sugar intoxication of his brother Andrew’s 7th birthday party when Derval (yeah, we’re on first name basis) came over to shoot the breeze. When the rest of the posse came out she couldn’t wait to get her pic taken with them.

I hope all that proximity to such a bunch of cool guys doesn’t turn her head this close to the Olympics. You’ve got until July to clear your head, O’Rourke. Concentrate! And good luck, you legend! 🙂

Check out the party dudes! Jacob and his brothers plus some buddies from our street.

I hate bragging about my endless charity work…

The Aran Islands are beautiful. Air doesn’t come fresher than on these three islands sitting in Galway Bay. The scenery is spectacular.

Sea level is the bit at the bottom. The road will be rising to meet us.

Now I know I left my reading glasses on a ledge here somewhere...

Water. With a hole in it.

All that nadural beaudy will count for sweet fa when I’m grunting and wheezing my way around Inis Mór on Saturday April 9th. I’ll be running a half marathon (that’s 13.1 miles, or 21 km, metric fans) in aid of Temple Street Children’s Hospital.

See how I said running? As in athletically, purposefully, lithely pounding the course as if it’s a canter along a beach to an ice cream van. And anybody who’s picturing my several wobbling bellies and the outline of a manbra beneath my teeshirt can bloody well go and donate twice as much as everyone else. Go on, off with you!

I’ve set up a donor page here.

It goes directly to the hospital from your credit card and is completely secure. There are many good causes in this world, of course, but if you can donate anything at all, the people at Temple Street will put it to work where it’ll do some powerful stuff for sick children. We here at Our Jacob know all about that, because the angels of Temple Street saved our man’s life when he was a month-old titch.

I’m more than happy to do this, and have you donate to see me suffer. What’s that? You’re thinking of doing it instead of donating personally? Why, I’d be delighted to have you run with me instead of just whipping out the old credit card and donating a fiver/tenner/life’s savings/deeds to that investment home in Moldova. I mean, I agree, it seems somehow too easy to do that. Great. So it’s settled. I shall drop round and pick you up on Saturday morning for a quick five mile break-in session. Brilliant. I was hoping you’d say that you wanted in on it. After all, who wants to just donate?

BTW, to the lovely people who already did give, you’re lovely people. xx

Down Syndrome Ireland is going to the dogs

Yeah I know, it’s a truly awful headline. But I likes a pun, see, and there’s a whole litter more where that came from. Sorry. (No, I’m not.)

First though, the important stuff: DSI is taking over ten greyhound stadiums on Feb 26th to raise funds at the following locations.

  • Cork
  • Shelbourne
  • Dundalk
  • Galway
  • Limerick
  • Mullingar
  • Newbridge
  • Thurles
  • Tralee
  • Waterford

Tickets are €10 each, and as well as having a flutter on skinny daft dogs chasing a mechanical gizmo, you can join in with raffles, auctions and all sorts of stuff. Have a drink, have two, wake up feeling ruff next morning but hey! Better than blowing it at  the dog trac- er, yeah…

But seriously. As fun goes, there are worse ways to spend a tenner, and the wonderful folks at DSI need our support. It might seem obvious to state that we need theirs even more. So no bitching.

I’ll no doubt hound you some more on this later. With dogged determination. It will be ceaseless and without paws.

Ok, gone now.

Visit Down Syndrome Ireland here

Or phone 01 426 6500

Amazing pirates

Often it’s easy to spot heroes. The cameras and the biographies give it away. They represent something that I can look at and admire and then safely ignore. Ok, maybe I’ll make that donation or pledge that mile, and yeah, they’re amazing, but they’re not really like me, are they?

Then there are those other heroes. The ones who are going about their business with an awareness of their world, and a quiet generosity that is often more powerful. They’re not Gandhi or Geldof or Christina Noble or Paul Newman, but they just might end up having a bigger impact on me.

We met a bunch of them last week. A day of activities for families across the special needs spectrum had been organised by The Variety Club of Ireland (a hugely impressive organisation that I must confess I’ve always been aware of without really knowing the great work they do.) They called it the Boat for Hope event.

Our aim is to share a boating experience with children who have special needs, and to raise funds for their comfort and benefit. The day begins with our special young guests, dressed as mini-pirates, departing from Howth Marina for a private adventure on the high seas!

It was deceptively simple and unquestionably took a massive amount of organising, for which we can only say a massive Thank you. An awful lot of people put in a gargantuan effort to make it a special day for a lot of children and adults too.

Firstly, it was an awful lot of fun!

Our protectors attack.

A dodgy character and no mistake

Aaaaghh!

Full photo gallery from Barry O’Loughlin here. (I hope you don’t mind my reproducing some of the wonderful pics, Barry.)

Secondly, we met Seamus and crew

Seamus McAleese was our captain for the day, and any impressions I had about yachting clubs and posh posers was quickly blown out of the water by him and his crew. They took our entire family into their lives, were generous without ever being pushy, took great pains to tiptoe around a bunch of idiot landlubbers and explained everything in fantastic detail. The kids had a most amazing time, and so did Mum and I. The Seamuses (there were two, which caused a bit of confusion initially) answered every question I threw at them and they involved Jacob and his brothers in everything. We all took the wheel, the boys attacked a few other pirates with water cannon and another crew member Ron insisted on minding Jacob while we sat back and relaxed.

I’d had no great hopes for the day really. We only heard about it at the last minute. But it turned out to be a highlight of the year. The fantastic weather, the great spirit of everyone and the generosity of Howth Marina boat club all helped. The escapist beauty of Howth Head from the sea, and the gorgeousness of Ireland’s Eye all covered with nesting birds, were certainly an added bonus.

But if I’m to be honest, the one thing that makes this day one that will never be forgotten was the attitude of the people who took us sailing. We felt privileged to be taken by them, but they made it feel as though the privilege was all theirs. Nobody had The Look, nobody felt the need to avoid certain subjects, there were comfortable silences too (rare among strangers, no?), there was a genuine generosity on the part of people who did not know us from the man in the moon, and they were incredible. When they left us back at the marina, myself and Jacob’s mam were actually too choked by it to say anything at all.

I don’t think we’re the only ones who want to scream every so often when either of us sees yet another Normal caught unawares and looking at our beautiful youngest child with mild but undisguised revulsion. Any one of those glances can be dealt with, internalised, rationalised and packed off. But woe betide the Normal who lets that look slip out on the wrong day. It hasn’t happened yet, but once or twice I’ve come close.

I’m saying this because these wonderful people, our crew for the afternoon last Sunday, provided the most powerful antidote I have felt for that feeling. I did not expect it, I did not know them, but I know them now.

Captain Seamus is convinced that being out on his boat is the closest thing to Heaven that you can find on earth. Days like last Sunday make it easy to agree. All of them seemed to be relaxed and in the moment with each other. In among the water pistols and the sugary treasure and the attacks by other pirate vessels, we got to share some life stories that somehow managed to overstep the small chat section. Condensed goodness. And the best piece of advice I’ve heard in a long time came as a joke from Captain Seamus as we were pulling back into the harbour. He asked me with a smile if I knew how to make God laugh. The answer was to tell Him your plans.

Seamuses 1 and 2, Ron and Lisa, we think you are quiet heroes. Thank you.

Jacob's brother Andrew, sandwiched between wild Pirate Seamus and Captain Seamus

Aye Cap'n, ye makes another very good point.

The only pic I have of Lisa. Sorry it's so bad, L.

A cabin boy ponders his new career path.

Pirate Ron with some golden treasure. Ok, red treasure.

Arts and grafts: some upcoming events

Thurs 8 July there’s an art auction for Saplings, the school in Rathfarnham. Proceeds go to vital services for autistic kids such as Speech, Language and Occupational Therapy. Full details are here. The fabulous Annie West has donated a piece. Hope to meet some of you there, and thanks Hammie for the tip.

Launch and Buying Party Thursday 8th July at 6:30pm
Sale Continues ’til 22nd July
THE BERNARD SHAW BAR
12 South Richmond Street, Portobello


***************

Later on in August there’s the Tour de Munster to look forward to. My buddy Yvonne tells me her cousin Paddy is cycling for Down Syndrome Ireland. 600 km over four days? Padding is my small suggestion. And to support Paddy’s padding, as it were, you can sponsor him here.

Tour de Munster 2010
600 km charity cycle in aid of
Down Syndrome Ireland

Thurs 12th to Sun 15th August


Special Needs Parents Unite – Protest outside Dail Wednesday 31st March at 4:30pm

Found and reposted from Irish Autism Action.

This is a non-political message from the Special Needs Parents Association:

Edited to add: To coincide with the Dail debate on Special Needs Wednesday 31st March we are organising a Protest @ 4:30 outside the Dail.

Special Needs Parents Association was formed by parents, from all over Ireland, who have Special Needs children.

You might not know this but since October 2008 education rights for people with a disability have been seriously rolled back. The Education for Persons with Special Educational Needs Act (2004) was never fully implemented and its rollout was halted in October 2008. What had been done was proving successful, due in large part to the resourcing of the inclusion policy with Special Needs Assistants (SNA’s). With the rollout of the Act halted and the SNA resource decimated, many children with special educational needs are really struggling to get the education to which they are legally and morally entitled. Ireland was amongst the first countries to sign the Convention on the Rights of Persons with Disabilities, on March 30th 2007. Three years later it has still to be ratified. We are calling on all Parents of SN Children, Adults with SN and SNA’s and Teachers and members of the public to come and support us and help be a voice to those who cannot speak to politicians.
Special Needs Parents seeks to improve all aspects of the lives of children with disabilities with a particular focus on education

(Special Needs Parents do not promote, represent or support any one political party, trade union or special interest group)

Our Aims
We aim to be a focal point for all parents of children with special needs. We aim to see that the Government fully implements the EPSEN Act (2004) and fully ratifies the UN Convention on the Rights of Persons with Disabilities.

Our Strategy

§ we will launch the website, http://www.specialneedsparents.ie. soon. This will contain a database of parents throughout Ireland who can be contacted in order to provide support, guidance, useful contacts and information for other parents who have a child with a disability.

§ Lobby government and authority to fully implement or live up to their constitutional and moral commitments with regard to the EPSEN Act (2004), the Convention on the Rights of Persons with Disabilities and the UN Convention on the Rights of Persons with Disabilities and recognise the right of people with a disability to an education.

Fight the single biggest issue adversely affecting the education of children with special educational needs today – the reduction in numbers and hours of the Special Needs Assistants (SNA’s).

The contact email is: specialneedsparents AT gmail DOT com