I must be an idiot

The results aren’t final yet, but I’m beginning to suspect that I might be. Jacob’s mum is always more finely tuned to the nuances of those around her. It takes me a while longer to notice the secretive glances and the subtle berth that separates us from the normals. But it’s there.

Young, handsome and charming.

I’ve been trying a little bit to understand why, but not much. Jacob so long ago became a normal (yes) member of us that his Downs status is just more stuff you have to make yourself  remember, like his eldest brother’s occasional bouts of the wheezies or his middle brother’s problems with stinky farts. (Actually I don’t need to make myself remember those at all.) If that sounds trite well excuse my flippancy all over the place but I’m bloody delighted. It is trite. He learns things more slowly than they did but already he’s shaping up to be every bit as much a pain in the backside as they are, and it cheers me up no end. He’s going to get shouted at, and that is fine. He’ll make us furious at times, and that is great. He’ll wreck the place and we’ll put our faces in our hands or – more likely – have a shouty fight with each other about something apparently entirely unconnected. There will be strife, despair and a sense that somebody, somewhere, pressed the pause button on our two lives when we weren’t minding the shop.

In other words, it will be a 33% helping of the same shit we’ve taken to calling life. With loads of other little Ds extras and head melts thrown in. But on the flip side we’ll have this kid who has played more in the last six months with the toys his older brothers practically ignored when they were toddlers, a kid who wakes up seemingly to make you smile every day and who takes delight in the very act of being. His Down syndrome doesn’t break my stride, let me assure you, although he himself very often does. If I’m under time pressure (I’m always under time pressure) and have to rush past the room where he’s whacking the bejesus out of some VTech junk I’ll feel bad that I can’t stop to play.

If you have a kid with Downs who has health issues, then of course these issues can bring hardship and suffering, but they are not Ds. Your child is not Ds. Your child may have it, but that does not define them, any more than being blond, Asiatic, left-handed, good with science or fond of natural fibres defines them. It’s an aspect of their lives, one that most people do not experience up close and therefore fear, or are made uncomfortable by. How Godforsaken would the world be exactly if we were to strip away every aspect of our otherness, each and every one of us? What ‘common’ traits would be left?

Speaking of God, have you come across the website that’s built upon finding a miracle cure for Trig Palin, son of Sarah? I do not mean to offend anybody’s religious sensibilities, but I cannot visit the site for long because when I do I’m in danger of chewing my fingers off at the knuckle.  April 18, 2010 is the day when God will be sitting up, listening to the prayers of who knows how many thousand as they implore Him to fix poor little broken Trig. Because make no mistake, these people tell us that Trig is not right. Fair play to his mother  Sarah Palin, she has stated that the world needs more Trigs. I’ve gotten ‘the look’ from my better half on more than many occasions when I’ve said that everybody should have one. But it’s very often how I feel. Blessed.

The Pray4Trig people just don’t get that, but I’m setting up Pray4thepeoplewhowanttofixTrig.com which will hopefully enlighten them. My day of prayer will be on April 17 next year, hopefully just in time to stop them piling up God’s email inbox with Trigspam.

Dad, you should REALLY have put a spam filter on that thing. Have you SEEN what's in there today?

Lowering expectations. Raising hopes.

Lookid here now, Mrs Old Enough To Know Better. I know that Our Jacob has Down syndrome. I have a bagful of incidental knowledge about the condition, and I also have a built-in radar for the slit-eyed, sidelong glances that some people keep throwing at him. Yes, he looks different. Yes, I know all the words that are crossing your mind right now, because narrowing your eyes doesn’t do enough to hide them. But you know what, Mrs Old Enough To Know Better, your own grandson is not going to catch it across the playground. Chill out, grandma. Take a leaf from this other lady here, the one who’s cooing and gooing at Our Jacob even though she’s never met him before. She looks like she wants to pick him up and run away with him. And now I ask myself the stupidest question again. Does she know that he has, you know…? Maybe she doesn’t. He’s a pretty smart boy, and maybe she sees that, and then she can see all his other fine qualities too and maybe of all the kids with Downs he’s gonna be like, you know, completely normal and-

King of the swingers

Play ball!

And then you kick your own arse into wakefulness, because somewhere between those two extremes, between the mean narrow-eyed spirit that’s looking at my son’s features like he’s a car accident and the well meant super-compensation of the lady dressed all in natural fibres, is where you have to live. You are the parent of the boy with a life-long condition, and you must be alert to things that others can be relaxed about. But you also have to remember that he’s just a boy, and don’t always wear that Downs Dad hat too automatically because for an awful lot of the time the Downs part of it is an irrelevance.

I know I’m wandering here, but frankly I’m using this post to arrive at some conclusions myself. (Sorry if that drags everybody around the houses a bit as I write, but hopefully there’ll be pictures too, so you can cut straight to them if you like.) I come from a house where no huge pressure to achieve was brought to bear. No monumental expectations were lowered on shoulders. Just do your best, that is what we think you should do. I love my parents for that, because I learned early enough that they had freed me to be myself. That is, I hope, what I will encourage my own boys to do, Jacob included. I have never lowered my expectations for him. I never said this boy’s going to be on the slow bus. He will, I hope, do his best. He will be on the bus.

I’m not entirely naive here. I know he’s not going to be an astrophysicist. That’s fine. I know a bunch of them and they’re disagreeable individuals, usually with body odour issues. Always shooting for the bloody stars and forgetting that in space you can’t smell the roses. And he’s never going to be a corporate lawyer either, so that’s another thing less to worry about. He’s a fundamentally smart kid with an honest face and a big sense of humour. I don’t think we’d ever allow him work in a bank.

Other people have, of course, much lower expectations for Jacob. I don’t know these people, but whenever I actually notice those around me, there’s often one or two of them in the crowd. They’re eyeing up the blissfully unaware Jacob (He gets that unawareness trait from me. It drives herself to dementia when I hear the -hear what I just said? part of her conversations but nothing before that nugget. It’s like a code phrase that snaps me out of my daydreams. But if he’s ignoring her then it’s just cute. Yes you are of course correct, it is unfair. There’s an imbalance here that needs to be adressed by someone in authority. That’ll probably be herself.)

But anyway, where was I? Oh yes, those eyes in the crowd that parents of Ds know so well. If their furtive sideways glances at your child get you on the wrong day, they can upset the whole applecart. If you’re fragile you could end up getting into difficulties in a deep Kleenex somewhere. If it’s the other wrong kind of wrong day, you could be explaining your actions to the guys in blue. Yes, officer, I am aware that reefing her thong up over the back of her head and snagging it on her (long) nose caused her some distress, but did you see the way she looked at my boy? Did you??? And a yeast infection is the least of her worries, I should think…

Anyway, to conclude this wandering ode to silliness, what are the learnings?

1. Lower your expectations. Not of your child, but of a certain set of people with whom you will invariably come into contact. I have minted a fresh word for these people.It begins with a and ends in ssholes.
2. Slower your expectations. This you should do anyway, because it’s amazing how much more of the Louis Armstrong Wonderful World you get that way.
3. Your child is a child. We quickly get beyond the epicanthal folds and the less usual skull shape and all the other stuff that immediately draws the inquisitive stares of the Downs Negative. And what do they know?
4. Celebrate the small achievements. This just started happening for me all of its own accord. I feel the most tremendous sense of accomplishment when Jacob does anything new at all, and I’m wistfully not remembering the same big pride when the other boys hit their marks in crawling, walking and so on. Pride, yes, but not the same level as with Jacob. Is that positive discrimination? Downs positive maybe.

The Generation Game!

“It’s better not to exist and give damages for having to exist”

My very good friend Caley brought a story from the US to my attention today. It concerns Deborah and Ariel Levy, a couple who, having been told that their child did not have Down syndrome, carried on with the pregnancy only to discover that their daughter did indeed have Downs. A doctor at the Legacy Center for Maternal-Fetal Medicine in Portland, Oregon, had ruled it out. Here’s what Oregon Online has to say about it.

But within days of the birth of their daughter, the Southwest Portland couple learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they’re suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.

Now forgive me if I come off as trite. I don’t mean to. I have some small experience of the gunk you get when Oops!yourbabyhasDownsyndrome! goes into your ears and zings around your suddenly utterly empty mind, bouncing off the smooth walls of the place where you used to be able to do things like thinking. Thoughts did assemble at some point, but I remember distinctly… no, lemme be sure… Yes, I categorically remember that at no point did I think WOW! THIS HAS TO BE WORTH FOURTEEN MILLION!

Another quote.

The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as “heartless.”

Oh you think?? ‘Babba, you’re just as dear to us as our other two kids, but somehow we reckon it’d have been worth fourteen million dollars NOT to have had you. We sure hope you’re okay with all that. Later on, like.’

“They feel very strongly that what happened to them was wrong,” Miller said. “They were given incorrect information, and their lives have changed because of it.”

No doubt there are thousands of tears and a whole lot of emotional heartache gone into the legal decision for the Levys. I do not care. You made a bad call, guys. A shameful call. You could bring a lot of honour on yourselves by admitting that and getting the hell on with the randomness of life as it’s been laid down for you, for me and for every other person on the planet. What court in man’s remit has the moral right to give you $14 million compensation for a beautiful baby’s life?

What would Bono do?

A time of crisis

I’ve come to regard Our Jacob as a place where serious things sometimes crop up, but usually there’s a happy resolution or a soufflé of laughter to balance things out. Not tonight. No fun to be had tonight. The country is quietly convulsing with the publication of the Child Abuse Commission’s report into religious abuses of our children over the last 70 years.

It’s big and it’s ugly. Comes to over 2,600 pages and it’s far beyond sobering. It’s nothing short of hideous. It’s even got its very own unlucky chapter 13 dedicated to the special abuse of special needs children. Fifty eight of them. A heavy thank you to the ever watchful and flinchless eye of Suzy B for this.

I want to gnaw my knuckles off, hide my head. It’s almost 3am but how can I sleep with the weight of this horror? These MONSTERS are beyond my contempt. These people who lived within a comfortable complicity and whose perversions were allowed, through church and state collusion, to flourish at the expense of thousands of defenceless children.

Image by Gerald Scarfe in The Sunday Times

The boards are lit up, around the globe. It’s on The Huffington Post. It’s on the BBC. CBS. It is everywhere. This is not another tired case of some paedophile ruining a child’s life. This is us, the country, Ireland, having to collectively face up to our duties, or our dereliction of them. I am beyond furious, beyond hurt and beyond understanding. I’ve been venting some of the anger over at my friend Bock the Robber’s site, but to be honest I think if the seas were to be emptied I could fill them again with the rage I feel against so many of the people and institutions against which I have measured myself down the years, only to have found myself wanting.

So I’ll be taking stock of that lost time.

The Catholic Church in Ireland must at this point consider how it will move forward. Meantime, while I try to regain some composure, I will just leave you with a morsel of what’s in the report. This is from that chapter 13, page 241, pertaining specifically to special needs kids.

13.31

Witnesses reported that while attending special needs services they were physically abused and assaulted by various means including being hit with leather straps, canes, spade and broom handles, various types of sticks and brushes, kitchen implements, wooden coat hangers and rulers. They also reported having their heads held under water, being put into cold baths, having their hair cut and pulled, being forcibly fed, and being locked in outhouses, sheds and isolated rooms. Witnesses with sensory impairments described the particular fear and trauma associated with being physically abused when they could not see or hear abusers approaching them.

God in Heaven I am angry tonight.

A winter eviction for Travellers with twin Down syndrome infants

From the Irish Times, Thursday 29th Jan:

LOCAL AUTHORITIES in Waterford last night evicted a couple and their three children, including twins suffering with Down syndrome, from their home at a city halting site.

And from the Independent, same day:

The O’Reillys said yesterday that they fear for the health of their children James (3) and twin girls Charmaine and Nikita (18 months), who both have Down Syndrome and bronchitis.

So here’s where the country has got to. I honestly didn’t think that recession included the receding of the warmth of human kindness. Have to rethink that one. But I’ve been wracking my brains as to how – on absolutely any level – the city of Waterford can actually be served by the actions of its council in the eviction of this young Traveller couple last week.

In this era of bad decisions and poor management, WCC has just made a monumentally memorable cock-up.

James & Helen O’Reilly with daughters Charmaine and Nikita

You can send your thoughts directly via email to Waterford City Council by clicking here.

Email: info@waterfordcity.ie

Their switchboard can be called at 051-309900.

Write directly to City Hall, The Mall, Waterford.

I suggest you mark your envelope ‘Thundering Clowns Competition.’

***********

Update: Feb 5th

Having sent an email to the Council last night, I received the reply below this a.m. To be commended on their speedy response time, if not their volume of info.

Joe Sullivan <jsullivan AT waterfordcity DOT ie> 5 February 2009 22:36
To: nmcgivney AT gmail DOT com

I refer to your email, and I understand your concerns for the family,
however I presume you have based your email on the elements of the case reported in the media, which do not in any way reflect the full context surrounding this case. The Judge considered the case fully and made his decision. I trust that this info is of assistance.

Joe Sullivan
Waterford City Council

—–Original Message—–
From: nmcgivney AT gmail DOT com
Sent: 04 February 2009 21:37

Subject: Council Business Traveller evictions

I only heard today about the decision to evict the O’Reilly family from their home. Appaling decision, whatever the reasons. This shames Waterford in the eyes of not just right thinking Waterford people, but the entire world. Is this the humanity that the wake of the economic boom has spawned in the Southeast? No alternative to this
fiasco could be found? And fiasco it is, on every conceivable level. I am father to an infant with Down syndrome, I know the hardship and difficulty it can bring. And I do not have to deal with Traveller bias OR twins. I’m judging it purely on these terms, and so should whoever made the appaling decision in the first place. Waterford, a town and county I have respect for and greatly admire, has lost standing.

Written with regret this 4th February 2009.

More to follow as the facts emerge.