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-

Swinger

King of the swingers

Ballpit

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.
tri-gen

The Generation Game!

Advertisements

16 comments on “Lowering expectations. Raising hopes.

  1. NAN P. says:

    You know what? Since Cathal’s birth, I am of the “melting with a smile” type of granny at all kids, but especially kids with DS. Because I see a beauty in their faces I never saw before.

    I have also noticed this idiotic yet so heart warming reactions in others when Cathal is with me in public. And I revel in it, I want to shout: “He is so cute, isn’t he? And I am lucky enough to be his Nan!”

    As for celebrating every single little achievement, ABSOLUTELY! Because each one is of double, even triple proportion. Discrimination? Yes, oh Yes! Bring it on!

    • Nick McGivney says:

      I didn’t notice the discrimination until the milestones were quite apparently later than with the brothers. And somehow me overcompensating and willing him on comes completely naturally. I’m loving all his milestones. And I don’t need to tell you to do the same, I know!

      x

  2. Mel says:

    An apt post Nick. I am struggling with exactly the same thing, as Luke gets older, cuter, more outgoing and the DS is more noticeable. The ‘how old is your wee guy?” followed by a surprised and disappointed “Oh.” The lady in town who made my day by saying “Isn’t he gorgeous?” but then added “Does he have a little touch of Down syndrome?”. No, I tried to explain patiently, he has the same amount as every other person with DS. “I know that. My grandson is 14 and has DS. He’s fabulous” came the reply. So now I feel mean. Or the guy behind me in the queue in the hardware shop who smiled at Luke, at me a little pityingly, and as I left said “Enjoy the rest of your day.” Does he say that to everyone? Am I being paranoid???

    I think I need to grow a thicker skin.

    • Nick McGivney says:

      I met a young guy, much younger than me, who has a wee girl with Ds and he is ready to fight the entire fukn world! Now! And I want to help take the weight off his back, but I don’t know how, and I don’t know if. I guess none of us leave our personalities behind, do we? But it is a balance for sure, and some of the times your paranoia will have a reason. But probably a lot less than you’d think. The percentage of arseholes isn’t as great as we magnify them to be, imo. Just like letting a rotten shop assistant ruin your day. Or something!

  3. Elbog says:

    Great post.
    This life can be an incredible see-saw ride, yessirreee. For me, when I’m at my peak of humanism, it can include point 1.a: Pity them – their ignorance denies their hearts of the treasures you possess. At the lower end of the spectrum, one caught staring at my doll in public can usually expect daggers from my eyes, delivered with Ninja-esque precision.
    I’ve developed a few callouses; scar tissue is a natural result of healing. I sure can have my days, but it’s more about just getting on with it, nowadays.
    Love that last photo, for sure.

    • Nick McGivney says:

      It’d be a long fight, and I hope the guy I alluded to in my reply to Mel above can make his young peace with it. But a bit of a dust-up every so often can’t hurt now can it?? 😉

  4. I’m laughing at Mel’s line about the ‘touch of down syndrome’. So Irish.

    It’s hard to know, hard to gauge who means well and who is being a git, and hard to know if what you say or do yourself would be considered git-ish to begin with.

    We just have to keep on learning I suppose.

    No idea where I ended up with that comment, which probably sums up what I meant better than anything.

    • Nick McGivney says:

      Hey buddy! Week 15 already! Where did all that go? God bless you Sir for taking the time to drop by, and I have left some sage advice over at your place. About sage.

      Everybody, go at once to this man’s blog and start at the (very far back) beginning. He’s annoyingly brilliant at pretty much everything. Eventually.

      • Taking the time? heh, I check in here probably 5 times a week in the hope of something to read.

        Had a good laugh at your comment, poor Angie. Your cheque’s in the post.

  5. Ciara says:

    It’s always the ‘aul wans’ I find are the ones with the funny looks. When Ava was very small I dreaded bringing her out in public to be subjected to stares but as she got slightly older I was proud of myself for plonking her in the baby seat in the supermarket trolley and ignoring the stares cause I didnt care anymore..
    Then I slowly realised that very few if any were actually staring and I was even more proud of my fellow countrymen and women. By and large I find them all fantastic and when they do start cooing and saying how gorgeous she is I too have that moment Nick where I say ‘do they actually know??’
    However a woman who had to be have been 80 or nearly 80 said to me and my Mum recently that she reckoned Ava ‘will probably be ok’.. is that progress from that generation 🙂

    • Nick McGivney says:

      I think it’s probably HUGE progress. We get the ‘I don’t think he’s that bad at all’ type of stuff from oldsters we know, and whaddya gonna do? I know completely what you mean with the positive reactions. Most people are wonderful. As for the ‘Do they know’ thing, wife dutifully snorts in my ear each time I say it aloud. So that usually sorts me out. 🙂

  6. I took care of a baby in the unit the other day, he had “a touch of down syndrome”.
    A lovely sweet child, as are all the babies that I take care of there.
    I only wish I could have been more of a comfort to his mother, and her concerns…some of which are still unknown, as the baby is only newborn. I’ve much to learn still, and I appreciate your blog, Nick, and many of the commenters (and their experiences)

    • Nick McGivney says:

      HGF, I’ll bet you’re more comfort than you know just by acting normal around people in that situation. Yes there are unknowns for many Ds kids, but it’s far from the sentence that say, being born a politician usually is! For someone to feel like they’re being treated with radioactivity suits and tongs at a time when they’re trying to absorb everything, that’s messed up. But just being there and talking to people, and being genuinely caring of their precious little baby, that is the kind of guidance that settles on people and offers way more comfort than you could imagine at that time. And thank you for noticing how many smart people I am graced with. Include yourself (and mail me the cash later) 😀

  7. Jill says:

    I have a little saying that I repeat to myself daily.

    “Don’t worry what people think, they don’t do it very often”

    I admit that sometimes this is said in an increasingly strident voice, through teeth gritted so hard my cheek muscles would give Schwarzenegger a run for his money, but still – on some days it helps.

    With Autism, we quite often get the ‘oh well, he will grow out of it’ comment which I guess is up there with the ‘got a little bit of Downs’ type statement.

    Sometimes I do think that people just say something for the sake of saying something. They mean well, but that doesn’t stop you from wanting to slap em sometimes :-).

    Still loving the blog mate, cracking piccies of Jacob. I have to ask tho – does he have a little bit of DS going on there…… (soz, couldn’t resist).

    • Nick McGivney says:

      😀 Jill, you’re 100% correct. You’d have to allow a bit of licence for saying the wrong thing but at least meaning well. Much rather that than the freaky total recoil syndrome.

      Hope you gang are doing well. Great to hear from you.

      x

  8. Iisadom says:

    I love it- a touch of the blarney, a touch of the ole autism; a touch of Downs.
    as for sideways eyes? Next time kick the bitch- or send her round and I will.
    Xx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s