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Sep 12

Stuck in the middle

Posted on Saturday, September 12, 2009 in Family, Rantings

This isn’t a rant, or a ‘poor me’ exhibition, it’s more of a ‘point-and-laugh’ sort of situation.  That’s all we can do, really.  It beats going insane.

We moved into this house a few months ago and I expressed on this here blog a genuine gratitude to the Council and to the tax-payers out there for providing a family with a special needs kid a pretty excellent house indeed.  It’s still an excellent house, but it feels sort of like a Karma explosion… as though we’ve used up our good luck for a while and it’s back to banging our heads against the wall again.

See… the reason this house is so great, is that we now have a mechanical hoist for Laughingboy so our backs are saved.  The only problem is that we were supplied with the wrong sling; the hammock-type thing that attaches to the hoist that holds the kid… it belongs to a different manufacturer so it doesn’t fit the existing unit.  I contacted the Occupational Therapist about this about eight months ago and the poor woman has been tearing her hair out ever since.

See… you’d think that the Health Board would sort this sort of thing, but apparently it ain’t their bag any more – they just don’t do grants because of cutbacks.  They told us it was up to the County Council.  The County Council told us to contact the builders, who couldn’t be contacted because their company went bust, because the County Council didn’t pay them for their work.  Therefore the hoist machine we have now is unpaid for, and nobody wants to know… we can pretty much forget about a properly fitting sling.  Time to start grovelling to politicians again? Ugh.  I hate grovelling.  I prefer manual lifting, thanks.


Then there’s Laughingboy’s wheelchair.  You know those circus acts where the clown comes speeding out like a mad thing on his ridiculously undersized car?  That’s what Laughingboy looks like.  His knees protrude grotesquely from the chair, his ankles covered in bruises because his legs are too long to fit onto the footplate properly.  He keeps sliding downwards into the chair like a naughty child at the back of the class trying to avoid his teacher’s glare, because his restraints had to be removed to stop them pinching his waist.  He cries a lot, but you would too if you had to spend most of your day strapped to a kiddie’s tricycle.

We… that is Motability Ireland, Laughingboy’s Occupational Therapist, his teachers and us, his parents, began lobbying for this chair seven months ago, and it looks like it’ll be another six months before the red tape is cleared and the Health Board can be assured that the existing chair cannot be adapted any further.  Only then will they think about clearing another one.

I’ve robbed a shopping trolley from Tescos in the meantime, if I pimp it out with a duvet and some pillows it should do the job nicely.  We could walk down the median of the motorway on the way to school and everyone could beep and laugh.  I’d wear a sandwich-board advertising the H.S.E., just to complete the irony.

You couldn’t invent this stuff, because if you did, nobody would believe you.

Bring on the comments

  1. Oh, you and I need to get together one day. Poor you and TAT and Laughingboy, what a mess.

    We’ve got a family of five including two autistic kids in a two-bedroom house. The Council promised us they’d provide a bedroom extension when we bought the house, but the last time our councilman phoned them to nag he was told it would take YEARS before anything was done. Well by that time at least two of the kids will be grown and away, so that’s the house size sorted right there. Grr.

    I’ve got a few funny stories about the HSE and their ‘grants’, but if I start telling them I might cry.

    Any hope or plan for the new wheelchair meanwhile?

  2. Brianf says:

    Please dear nanny state may I have…
    Please dear nanny state may I have…
    Please sir, I have paid my taxes may I have…
    K8, you know I want only the best for you and yours but tomorrow morning I’ll finish up this rant.
    leim thart!

  3. And now I see why you were surprised that the feeding machine got fixed so quickly! I don’t really know what to say, but you should know that I am shaking my head in disbelief!

  4. K8 says:

    Susan; Talk about crowded house!! That’s ridiculous. I’ve heard horror stories about elderly folk being told that yes, their extension has been complete but that no, the grant is no longer available so they’ll have to foot the bill themselves. What is it they say about how a country treats its weakest citizens again? I’m going to go xtreme soon regarding the wheelchair. One phonecall a month is nowhere near enough.

    Brianf; There’s an upside. We’re not living in the 1930’s, nor are we in a third world country. We’re somewhere in-between which isn’t so bad I suppose.

    Jenny; I suppose a wheelchair isn’t vital to life like the feeding machine, and it’s a helluva lot more expensive. I’m glad the priorities are straight, if not pretty slow!

  5. Baino says:

    Kate go to the papers or one of those awful tabloid news TV shows. It’s outrageous that you should have to wait so long. Scream long and hard! At least the feeding machine was replaced within 24 hours. You do pay your taxes and you’re totally entitled to efficient occupational therapy and assistance.

  6. unstranger says:

    K8, you obviously need assistance. If you set up a bank account for the purpose of funding what you require I feel sure people would contribute. Make out a list of exactly what ‘s needed. Cost the items and set the maximum cash goal you need to achieve the purchases. Close the account and publish the details when it’s done. I will contribute €50 straight off. Not a lot mind you but many little contributions would work wonders.

    And you’re right not going cow-towing to scumbag politicians.

    So just start on it. Call to your bank and they will explain how it’s done. Just do it.

    p.s. ask if you should include details for international money transfers, banks have special codes for that, sort codes don’t work for cash coming from out side the State

  7. holemaster says:

    Well your tax has gone to prop up the banks K8 so I’m afraid there’s no money left for what your tax was actually for in the first place.

  8. Will Knott says:

    It might be worth contacting the Irish Wheelchair Association. They can’t accept previously owned wheelchairs, but they might be willing to pass on details when offers of the chairs arise.

    You never know, someone else might have the sling that goes with your machine, and the machine that goes with your sling. Post the details.

  9. K8 says:

    Baino; I’m too stubborn, I’ve too much pride to be one of those martyred victims. Stories like these are ten-a-penny around here and most are far more life-threatening than ours. Nope, it’s screaming kiddies hyped up on lemon sherbert in a busy health board waiting room for me!!!

    Unstranger; That’s an entirely generous idea, thank you so much for suggesting it, but it’s a bit more complicated. The chair has already been designed and fitted, but the details seem to be ‘lost’ in the Health Board, a task that takes much sleuth work from us and many many phonecalls. Such are the perils of a majorly important public institution not having a computerised system. Post-it notes are a bitch to sort.

    Holemaster; Yes I thought as much. Can’t even rob a bank, how sad is that?

    Will Knott; That’s a brilliant idea slingwise, thanks a million… there are bound to be some floating around unused somewhere. I’ll try it.

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