Talking on the radio about Our Jacob

I was asked to speak on The John Murray Show on RTE 1, Ireland’s largest national station. He was very nice to talk to, and on the back of some very positive coverage that Down syndrome has received here recently, the entire piece was very warm and engaging.

Therein lies the problem for me. I had an opportunity to raise one or two critical points about services, about how important funding is now, and I got caught up in the cosiness of talking about how wonderful Jacob is. That in itself is not wrong, and I don’t for a second criticise the very nice people at The John Murray Show, but I am kicking myself now.

We're not walking yet, but we can get there

Here’s what I did say.

Talking on the national airwaves about Our Jacob

Here’s what I didn’t say.

Our backs are against the wall. The economy has never been in a more precarious state. Unemployment is ludicrously high and emigration has swiftly and devastatingly replaced immigration. The Church, for so long an incredibly powerful presence in the lives of ordinary Irish people, has been neutered and is not even on the radar of many young families. We are spiritually lost, economically bereft and lacking in leadership we can trust. We are in the shit.

The stuff is gone. The swagger has turned to a shuffle. Now is the moment we find out who we are. And if we are anything decent, anything that our trusting, hard-working parents and grandparents would have wished us to be, we will hold fast to what is important. We will make sure that nobody is left behind. We will give to those who need it most. This is a rich country, alive with ambition and intelligence. It is our choice whether we use those gifts for the pursuit of selfish gain, as we’ve gotten used to, or something more fundamental. We are, for the most part, and with some notable exceptions, all in it together. If we allow others to foist ill-thought-out strategies on us just to ensure that some bond holders, who do not care a whit for people, can take the skin off our backs then we are complicit in our own destruction. If we allow health cuts to sacrifice a single one of our weaker members then we are complicit in our own destruction. If we do not fight, haggle and scream about how important these, the weakest, are to our own essence as creatures capable of having a conscience, then we are complicit in our own destruction. Self interest over the last 15 years has guided us straight to hell. We could argue for several years about our accepting herd mentality in Ireland, but it would only serve one purpose: to stop us from actually doing anything. Winter is here and we no longer have that option.

That’s what I didn’t say. It’s not a plea for Jacob. It’s a plea for everyone who is different. And no matter how in the middle of the middle you consider yourself to be, you’re different too. Now that I’ve written it I’m kicking myself all the more.

Honest to God. That's the international banking quarter, Oct 2010

Wills, won’ts and don’t-want-tos:Jacob and the future

ostrichSome people become paralysed by overriding concerns. With me, alas, concerns have never truly been able to override whatever it is that I’d rather be thinking about. I have the remarkable ability to face important issues and promptly park them on the least visited floor of my mental multi-storey. Often I lose the ticket altogether and have no idea what it was I parked, let alone where. A Fiat 500? A unicycle? Impending total kidney failure? Taxi!

Some might consider this a good thing. Others might view it as a fatal character flaw. I don’t know. I’ll think about it later.

In the last week or two however I’ve been caught unawares. Ambushed by thoughts of the long-range future, you could say.¬† One of these came about when I went to St Michael’s House for an evening’s light entertainment on the subject of making wills and provisions, specifically for children with disabilities. (This has been covered properly by South Dublin Dad last September.)

And just in case the subject matter wasn’t hitting its gothic quota, the Dublin 11 weather obliged as if it was doing a screen test for Wuthering Heights or maybe an Agatha Christie whodunnit. It was an extremely inhospitable, storm-lashed night. Winter-stripped branches lunged at us as we ran across the flooding car park. Rain barrelled down, drenching all and sundry in the dozen steps between their cars and the school assembly hall. Short of a few streaks of lightning and a creaky olde inn sign that read ‘The Last Will & Testament’, the scene was well and truly set for a powercut of an evening’s entertainment.

I expected a dozen people to be there maybe. Not 130 rapt parents in a warm and inviting assembly hall, listening intently to solicitor John Costello from the firm of Eugene F Collins as he gave thoughtful insights on the subject of providing for your disabled children after your death. He was clear, concise and gave excellent and unbiased advice. Legally unbiased, that is, in the sense of looking for your business. He wasn’t. He has other vested interests, both with St Michael’s House and in having an older sibling with disability.

So why did it rattle me? It’s not as if I haven’t thought about life for J after we’re gone. Well, in one soft-spoken piece of advice, Mr Costello said that you couldn’t expect a child’s siblings to be their primary care givers once you’d died.

That was all. Nothing earth-shattering. Unless, like me, you’d constructed a neat little rapid-fire solution for the future (the boys will take care of him) and then stuck it on the back burner of complacency.

You can’t expect a child’s siblings to be their primary care givers once you’ve died.

Simple. And of course, absolutely right bloody on. Jacob won’t be a baby forever, a hardly-any-burden-at-all bundle of joyfulness. He’ll be a grown man, well capable of offending his brothers’ wives’ in-laws. More capable of offending them, possibly, than the next man. I don’t know. How the hell am I supposed to know?

You think I want to be bothered with this? I had it all neatly stacked. The boys will take care of him. Mr Costello very kindly went right ahead and drove the stunt car through my deliciously neat stack of stunt cardboard boxes. You can’t expect a child’s siblings to be their primary care givers once you’ve died. Dammit.

Then last week, as if to reinforce all that, our young man uttered his first word. Aptly enough, it was More. My heart skipped a beat, as you do. He wasn’t asking for more food either. He wanted more Wheels on the Bus. Bouncing on my knee was ending too quickly, he felt obliged to tell me. Well we could sort that out. He ended up close to puking by the time the Wheels finally coasted to a stop. But he did keep asking for mah. So it was his fault really.

And now I have to think some mah for myself. Mostly around the area of a Discretionary Trust. Because, according to the man who pulled my head out of the sand, that’s the thing to do for someone with a disability of the learning type. It removes the issue of inheritance tax, it won’t affect the individual’s disability allowance the way ordinary inheritance would and it’s not means tested. And I can’t expect Jacob’s brothers, who God willing will have long lives and trajectories uniquely their own, to be responsible for him all his life. That would be the easy way out.ostrich-2

Am I being too positive?

Back when I was a student my middle was a dark place of pessimistic nihilism shrouded in impenetrable angst. Life was devoid of meaning, and always would be. Just to make sure that the fact wasn’t lost on people, I wore a very long, black coat that had a velvet collar. That collar was a little bit ticklish, but on the whole it was a small comfort that I could always turn to as I wandered through those late teenage years of unspeakable weltschmerz and uncertainty.

Somewhere along the way the angst got forgotten. I think that the bank’s relentless requests for me to focus on my overdraft and concentrate on making it an underdraft somehow removed much of my world pain. The Smiths split too. Morrissey got all stylish and The Cure seemed happier somehow. By ’92 they’d be doing this. Everybody was either emigrating or getting a job at home and I just couldn’t keep the dark moodiness going on my own. You need time for that kinda thing anyway.

But change is the only constant, right? And the last twenty years have seen plenty of it. Ups, downs, sidewayses… Mostly though with sunny side up. I saw Leonard Cohen in June this year, and he was sublime. I knew he’d be damn funny too when early on in the gig he said he’d tried lots of different religions, ‘but cheerfulness kept breaking through.’

And that expression got me to thinking. Cheerfulness keeps breaking through with me too, but of late I’m sensing that it can cause upset to others. I’ve been dealt some lucky cards in my time. I’ve gotten some real jokers too. Now I’m wondering, is my natural proclivity for seeing the positive resented by others?

I was involved in a group discussion recently where someone was having a hard time with themselves and their expectations of and hopes for their DS child. Perfectly normal on any given day. My commentary, as is often the case with me, was upbeat and positive. Another voice in the discussion said words to the effect that if you don’t have regrets for your child with DS then you’re not progressing.

The comment stung me at that moment. I personalised it because, in the eight months or so that Jacob has been with us, I did not ever wish that he didn’t have Down syndrome. I had become immediately immersed in the special needs of my boy, but the thoughts of him not having DS, or the idea of wishing there was a cure, never entered my mind.

With that one little comment, I felt like I’d run into that Wile E. Coyote fake tunnel painted onto the cliff face.

Does this make me a bad parent, not wishing for better for my child? It seems so, in a courtroom drama sense at least.

Prosecuting lawyer adopts chummy elbow-on-bench pose as he addresses the jury.

‘Now ladies and gentlemen, are these the actions of a caring father, a father working towards the betterment of his dreadfully disabled son? No they are not, ladies and gentlemen. No they most certainly. Are. Not.’

Open and shut. Let’s all go home. But hold on a minute. Hold on there a minute. Just hold on a minute. I’m here a wee while. I’m beginning to know myself. I’m not Captain Hip Hip Hooray, but on the whole I am a cheerful guy. Glass half full of lemonade made from the lemons, yeah? Jacob came as he is. I took him as he was. There was no more to it. His day has a slightly different structure now than his brothers did at his age, but once the physio, slower feeding and sign language etc have been factored in – and even as they are BEING factored in – I do not see the difference. Occasionally it is brought home to me. Like when I see his cousin, who is slightly younger, easily surpassing him with milestones. Or when he has a particularly square-jawed downsie look. But I cannot imagine ‘fixing’ him.

I have been chided once or twice by she who is nearest and dearest to me about my optimism. She’s right, because sometimes it is inappropriate. On more than one occasion she has said that ‘If it was up to him, EVERYBODY would have a kid with Downs.’ Not PC enough for you? Probably not. But on those occasions, when my heart is overcome with the straightforward, no-strings-attached love that funnels between him and me, I wish this for everyone. Yes I do. Maybe I don’t know enough about the future and its trials. Maybe I’m a naive fool. But right now I do not care that his Leaving Cert results will not matter in quite the same way as mine did, or that his career trajectory will not be stellar in the Wall Street sense. I do not care. And if I am lucky I will not care later either. His life will have its own worries. Whose doesn’t, exactly? Much of what he does will be judged on a different scale. As I look back from the (hopefully!) half way mark I wonder whose will be the better quality scale when the final courtroom verdict is in. I’ve seen one or two judges in my time make one or two fool judgement calls.

I’ll deal with the problems of the future when they come to find me.

The judge peers over glasses and under bushy eyebrows to address the jury.

‘Gentlemen and ladies of the jury, you are directed to deliver a verdict in the case of A. Cheerfulidiot. What say ye?’

Don’t forget the non-downers!

We’re at this half a year now, this having a kid with Down Syndrome thing. Those of you who know us personally will know about a lot of the adventures on the way. By adventures I don’t mean The Famous Five either. These are more of the heart-in-mouth, guts-on-spin-cycle type, the three a.m. wide-eyed, whispered two-word sentence and two-word answer.
‘Temple Street?’
‘Temple Street.’
Ah yes, our heroic medical friends in Temple Street. And all the other hospitals. And our friendly local pharmacist. By now we’re virtually related, you know. And the social workers, health nurses, physiotherapists and assorted gang of benevolent do-gooders that we are pleased to know but just never expected to be making room for in our lives.
You’d think that Jacob had taken over.
You’d be right. He’s a joyous bundle (clich√© alert!) and he’s been educating us in a plethora of ways that we never expected, but that has its downsides too. (Downsides. Oh but that’s a good one.)
One of the quieter disadvantages that you have to train yourself to watch out for is that you don’t neglect your earlier, ‘normal’ kids. They’ll try to tell you in their own way, of course, but if that way means acting out or throwing hissies you’re likely to have less patience than normal, because you’re a little bit frazzled now that you’ve got Down syndrome too (you know what I mean).
It’s harder to spot if they become withdrawn or quiet. Easier to ignore too, what with all the special needs demanding your attention elsewhere. Withdrawn children is not something I can claim to have the remotest experience of however.
But whether extro- or introvert, if you ignore the behaviour or misinterpret it, it will come back to bite. Kids demand attention. They need it. If they don’t get positive attention, they’ll settle for negative. And that too will cause aggro. As if you didn’t have enough just now.

I’d love to be able to say that my house runs like clockwork, that we divide our time carefully so that everyone gets a fair portion, that all that needs to get done gets done properly, that everyone pitches in, that there is no constant cry of ‘Not fair!’ emanating from someone, that each accepts their lot and makes cheerful do with limited resources. But that’s not where we are right now. It’s something that has taken me some time to accept. Lots of things need doing, but lots of other things need doing before them.

Jacob’s brothers, at six and three, are a challenge. They are demanding, selfish, ungrateful and unaware of exactly how much of their parents’ energy they consume. It took a while for that epiphany where I went ‘Oh my God they’re me! That’s what I was!’ And then the note to self: ask parents why they didn’t murder me many years ago.
But that only consoles me so far, because I’m the daddy now. My remit is bigger. It’s MY energy these little (expletive) are leeching. If they had to pay $140 a barrel for it they’d wise up quick, I tell myself, because they get through a couple of supertankers each on a weekly basis.
There’s no easy answer. Life isn’t a sprint. This is marathon training. I have lessons to learn because I’ve never had three boys before. The youngest one has a recognised handicap, but believe me they all have special needs. As do I. And in trying to spread my dadhood resources as wide as I need to, inevitably gaps appear. My temper gets tried too often, and I am learning how to subvert that. Why? Well because personal experience has taught me that throwing a bigger, louder hissy fit than the boys doesn’t solve anything. It just makes for a guilty dad, nervous kids and an angry wife. Take that on a picnic why dontcha!

So have I got any advice? Here is all of it.

  • Remember that your kids won’t remember how whiny they were then.
  • Forget how whiny they are now.
  • Lower your expectations.
  • If you can do one thing with each of your kids individually, no matter how short a time you can devote to it, do that one thing. Quality is what is memorable.
  • No amount of stuff you give will compensate your grown child for the minutes you didn’t give.
  • Don’t overexplain.
  • Don’t ever think that you’re not a kid yourself anymore.
  • Save something for you. Write a poem, grow roses, talk to a hamster, kickbox, blog, collect car tyres, sit in a darkened room and weep a little… I don’t care what it is. Make it yours and only yours. Everybody needs that space.
  • Accept that you will mess up.
  • Finally, and probably most importantly, don’t try to clean both ears with cotton buds at the same time. This, uh, this guy I know told me it doesn’t work.