Word of the day

09/09/2020

Dan – any of ten degrees of advanced proficiency in judo or karate; a degree of expertise in karate, judo, tae kwon do, etc., usually signified by the wearing of a cloth belt of a particular color; level: a sixth-degree dan; a person who has achieved a dan.


Another birthday

22/04/2014

Our family should have been celebrating another birthday today – that of our first son, Tom.

But he had a brain disorder and lived only 20 weeks.

In spite of all the tests which were carried out while he was alive and a post mortem, no cause was found for his problems and we were told it was safe to have another baby.

We did and just over two years after Tom’s birth we welcomed Dan’s arrival.

Our joy was short-lived. When he was just two weeks old Dan started having fits, which was the first sign we’d had that Tom had problems. It took a few weeks of tests while we waited and hoped. But eventually we had to accept that Dan had the same condition which had killed his brother.

He lived longer, dying 10 days after his fifth birthday, although he passed none of the developmental milestones and could do no more the day he died than the one he was born.

The year after Dan’s death we hosted an AFS scholar from Argentina.

There’s a huge element of luck in these relationships and we struck the jackpot – a lovely teenager whose family became ours.

I can’t answer the question of whether it would have been better to have healthy children ourselves or to have our exchangee and his family in our lives.

Of course I’d rather our sons were alive, happy and healthy but I wouldn’t want to shut the doors that have opened because those ones closed.

All I can say is that few people go through life untouched by sad times but it is possible to get over them and life happy lives again, not just in spite of them but sometimes because of them.

We’ve you’ve been in the dark valleys, the light and warmth on the mountain tops is even better.


What’s fair?

07/11/2012

Todd suffered brain damage during his birth which left him with multiple disabilities.

Exactly one year later our son Dan was born with an undiagnosed condition which left him with multiple disabilities.

Neither boy passed any developmental milestones. They didn’t learn to smile, roll, crawl, walk or talk and both were functionally blind and deaf. They were unable to do anything more for themselves when they died, by coincidence within a few days of each other when they were aged six and five respectively, than they could the day they were born.

Todd and his family got a lot more help than we did because he was eligible for ACC and Dan was not.

You could say that wasn’t fair and people with similar disabilities should get similar assistance regardless of whether they’re caused by accident or illness.

Labour MP Andrew Little has suggested that and no doubt it will be an attractive idea to some.

But would that be fair?

ACC is a contributory scheme, fully funded by levies.

How fair would it be to impose on wages, salaries and taxpayers the huge increases in levies which would be needed to cover non-accidental incapacity?

If there’s ever a time to decrease take-home pay, it’s not now when so many budgets are over-stretched and we’re all being encouraged to save more.

It would be even more unfair in the future if Little’s other suggestion of moving from a fully-funded model was changed to a pay-as-you go which could impose even greater liabilities on future generations.

Life isn’t fair. Sometimes the government can do something about that but sometimes the cost is too high.


Good theory too expensive in practice

25/07/2010

When our son, who had cerebral palsy which left him profoundly disabled, was approaching his fifth birthday his paediatrician discussed the options for schooling with us.

He said he thought Dan was incapable of learning but he was willing to be proved wrong and even if Dan didn’t gain intellectually from school access to physiotherapy may help him physically.

Legally Dan could have gone to the local school but it had only three teachers and none of them was trained to work with severely handicapped children. Nor did it have the equipment or facilities which might have helped him. We enrolled him at a school in town instead. It had a unit for children with a range of disabilities which was staffed by teachers who specialised in high needs children.

We’ll never know whether it might have helped Dan because he died a few days after his fifth birthday but I was reminded of the options we had for Dan when I read that half our schools are failing high needs students.

The ERO report, released today, pins the failings on poor leadership and training in schools, as well as prejudice.

That may be true of some schools but I doubt it’s fair for them all. It won’t be the will but the means and the money which prevents many schools giving high-needs pupils the help and attention they require.

Wellington High School principal Prue Kelly said resources were the bigger issue. “It’s grossly under-funded. It’s all very well to say personalised programmes, and get a plan around the kids, but actually it takes a huge commitment by the school to do that.”

Quite. This is what happens when a good theory – the integration of children with disabilities into mainstream schools – meets the expensive reality.

These children require specially trained staff working one to one. Few schools have those staff and the money for the equipment and facilities they need.

Mainstreaming may be the ideal, but fewer schools offering specialised help may be the better option with the staff and resources available.

This doesn’t mean ghettoising disabled children.  At the school Dan would have gone to the disabled children mixed with the other pupils who were encouraged to play with and help them which had mutual benefits. But the special unit allowed dedicated staffing to ensure the high-needs children got the skilled help they required.

In a perfect world high needs children would be able to get everything they require through mainstreaming, but in the imperfect world we have it’s not always practical or affordable.

The ideology which drove mainstreaming without the resources to make it work is similar to that which led to the closure of This  sheltered workshops. Karl du Fresne wrote on this in wanted: work not walls  in the Listener and on politicising the disabled on his blog.

In both education and work some people with disabilities are victims of the best of intentions to help them because we can’t afford the resources to make the theory work in practice.


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