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 (cliché 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It’s harder to spot if they become withdrawn or quiet.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 Withdrawn children is not something I can claim to have the remotest experience of however.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.