Down syndrome and new parents: some people’s experiences

Southside Dad recently put together some interviews for Down Syndrome Centre featuring parents who’ve ‘had the experience’. If you know anyone who’s reeling because they’ve got a new baby with Downs, these might help things to slow down a bit.

Here Martin and Deirdre, both first time parents, talk about their memories of the new arrivals.

You can also see them over at Southside Dad’s blog.

(Thanks Dave!)

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Carer’s Allowance under threat from ill-informed bureaucracy

3566050087_b1af426487_bImage thanks Ozio-Bao

Hammie has done a lot of fantastic work on this post at Irish Autism Action, outlining the frankly terrifying work that’s going on behind the scenes in civil service land here in Ireland. In short, under cover of the economic times, Carer’s Allowance for those looking after kids with special needs is under threat. Assessment is changing, toxic misinformation is seeping out and a lot of already hugely pressurised people are scared witless at the prospect of having their meagre support slashed. You’d be up late if you were paranoid. If you aren’t, start now.

An excerpt:

At no point were parents or advocates representing parents and carers consulted in the process. This is a payment for people who live with and care for a child with a disability. And they didn’t consult anyone who actually does this full time.

Everybody knows that we all have to face tough times. And most everybody I know is willing to make the sacrifices necessary. But this, all frivolity aside, will put suicidal thoughts in people’s heads. It is quite simply misguided at best, and nightmarishly sinister at worst.

We will have to resist, resist at every turn, and do what it takes to imprint on bureaucracy that even faceless actions by the untutored can have the most severe repercussions.

This is really great reporting from Hammie, and I am extremely grateful to her for it. Read it all here. Most especially if you care for someone with special needs here in Ireland.

Whatchoo lookin’ at?

Yesterday Jacob got the results from his Breathing Cert. He scored a double A for his lungs. Crystal clear, said the doc with the x-ray vision in Temple Street, while his mammy exhaled in delighted relief.

We’ve been told by the smart folks at St Michael’s House that because of his history of aspiration/pneumonia/lung infection that it was important for Jacob to drink his bottle in as upright a position as possible, and also to remain in a sitting position for a half hour after feeding. No more last bottle of the day and straight to bed. The top brass in Temple Street reckoned that this was pretty good advice. And so do we.

On a separate note, a big congrats to Sesame who has just qualified as Senior Big Boots Professor in Children With Special Needs. She now Officially Knows Everything™ so scoot on over and ask her something really hard, like what the capital of Bolivia is.

Sandwiched between Iraq and Israel

Late June, 2008.

Soggy-assed, typical-Ireland-of-the-80s overcast-and-prone-to-heavy-showers late June.

And Jacob has once again checked in to the Temple Street Hilton. Is it pneumonia? Is it a viral infection of the lungs? Is it a bacterial whatchamacallit? Dunno. But it’s got the little soldier digging hard for breath. As I write, his mum will be trying to bed down beside him for the night. He’s sharing a room with three other kids plus one parent apiece. Buzzers and beepers and door slams seem timed to go off – with maximum cruelty – as you are just about to nod off into a half hour of restless but damned welcome semi-sleep.

He’s been put on a nebuliser tonight and that seems to be helping. His airways look like being one of his ‘things’. You know, like a club foot or a heart condition. He didn’t get those, which is lucky for him and us, but right now them lungs are giving us all the extracurricular activity we need.

The ironies heap up. Last Christmas when Jacob was in Temple Street his grandad got a touch of pneumonia too and was in hospital himself. Where is he now, right this very second? Not five hundred metres up the road from Jacob, in the Mater Hospital, awaiting a multiple bypass. So our inter-generational double act is still keeping us in stitches! My son and my father. Are they working together, two nutty professors in white coats, planning the finer details of these krazy escapades?

You know when you fill in an address form on the net and you have to select your country from the drop-down menu? Ireland is usually stuck right between Iraq and Israel. You can just feel the love, right? That’s the kind of sandwich filling I feel like right now. And maybe Jacob dodged the heart condition, but Pops is struggling tonight with three left arteries, two of which are 95% blocked while the other is really no trouble, being only 60% blocked. Yes, that’s me being ironic.

You can bury your head in the sand if you want to, but it’s a guaranteed way to get your arse kicked when you least expect it.

A spaceman came travelling

The hunter and the swan

 

The young swan hid in the shallow mud and sedge, terrified. Splash splash splash splash. The strides approached her exposed refuge. It was the first, the last hiding place she could find. The splashing feet stopped, as though trying to get their bearings, then started again.

She was never designed for camouflage. Her graceful neck was an arc of beauty amongst the straight reeds. Once upon a time perhaps her grey, downy feathers might have merged with the muddy straw on the bank, but now she wore a coat of purest white, impossible not to see. No other face could look like hers, at once peaceful and knowing, with a gentle tilt to the side; her beak the colour of a burnt August sunset.

The footsteps were getting closer. Relentless. She had no voice to cry out, but her heart’s hammer would give her away, she felt sure. Splash splash splash. All alone. There was no sanctuary.

The splashes paused. The hunter was close now. He could sense the quarry. A small satisfaction rippled through him. His equipment was the best. His method was correct. His reason was sound. He was a hunter. He would provide.

A flock of curlews screamed into the air when the shot rang across the marsh. A mile away, two older swans turned slightly at the sound and moved serenely on. There was very little blood. It mingled with the muddy backwater and disappeared. The hunter turned towards home and family, satisfied with his day’s accomplishment.

 

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On June 4th a San Diego, California-based company called Sequenom announced that it had developed a test that detects Down syndrome before birth without giving false-positive results. Almost immediately the company’s share value rose 22% on the New York Stock Exchange. Sequenom intends to sell its test in the U.S. from 2009. I do not wish it happy hunting.