WHEN RESPITE WORKED FOR MY DAUGHTER

http://www.lookingforbluesky.com/2016/07/when-respite-worked-for-my-daughter.html

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WITH AND WITHOUT YOU (A DAY WITH SMILEY)

*** This will be the last post on wordpress, as it’s all becoming too much to manage – if you like my blog please check out my blogger site www.lookingforbluesky.com and/or follow by email or Blog lovin or something like that. Thanks for all your interest over the last while ***

If I’m lucky I get to sleep until 5.30am when the alarm goes off. Sometimes I think that Smiley can hear it too, because I hear her calling on the baby monitor at the same time. Today was one of those days: she wanted her wet nappy changed, and then I sat with her and had a quick coffee while the water heated up. I left her with the telly on, had a quick shower and dressed, ready for the day.

At 6.40 her home help arrives and between us we get her showered, which involves lots of logistics and hoisting and mopping – so I wash the whole extension floor at the same time. While her home help gets her dressed, I dig out and iron the clothes, and find her leg splints and put everything within reach.

 

More here.

 

INCLUSION, WHAT INCLUSION?

I was at a meeting about Transition Year at my son’s school last night. But of course not all of you will know what that means, so it’s definition time again…

Transition Year is the Irish education system’s answer to the Gap Year except it takes place between the two sets of state exams during the secondary school years. It’s a bit like Marmite, some love it, some hate it, and that’s just the parents.

It’s also compulsory at my son’s school, and there was a lot of interest in the meeting. This isn’t a fancy well-equipped school in a leafy suburb, it’s in the inner city and caters mainly for teenagers from disadvantaged backgrounds. But it does not resemble the typical media portrayal of inner city schools. They mostly seem to feature disinterested parents, exhausted teachers and feral teenagers. My son’s school couldn’t be more different. and last night the room was packed with parents and their children; extra chairs were pushed into every corner to accommodate all the people who turned up. The teachers are mostly young, and they are all enthusiastic and passionate about education and committed to getting the best out of the boys in their care. As for the boys, well I defy you not to be impressed. Despite many of them living in very difficult circumstances, they were all well turned out for the meeting: nicely dressed, clean shaven, smart hair cuts.  They sat quietly and attended to the presentations. They didn’t interrupt, but asked intelligent questions at the end about the plans for year, which include studying more than 30 subjects, project work, a mini company, weekly work experience and career guidance, and a national award scheme that includes community work and sport.

If any of this this sounds patronising, I apologise. I’m just trying to show how the education system in Ireland does succeed and does make a difference, even in those schools that fall beneath the radar and don’t appear in the league tables.

So why does the education system keep failing those on the autism spectrum, even schools like the one my son attends that are supposed to cater for them?

more here

WHAT ARE THEY TRYING TO DO TO US?

Some thoughts on New Directions, the Assisted Decision Making (Capacity) Act and more 

Perhaps you are wondering what on earth I am on about? So here’s a couple of definitions:

New Directions is the latest disability-related policy from the Irish Health Service (HSE). My understanding is that it was introduced to address all the scandals of poor care in residential homes for adults with disabilities. The idea being to move all those affected back into smaller homes in the community.

Now the policy has been extended to adult day centres, which are provided for those adults for whom paid work is not possible due to the severity of their disabilities. They are now to be based ‘in the community’ too.

More here

REASONS TO BE CHEERFUL 19.5.16

Last week ended very badly but I think it was a build up of stress and anxiety. Once it was over, it really was over and this week began really well, and I was briefly back to my old energetic self. I cooked myself a dinner (instead of the toast I’ve been living off for the past few weeks) and we sat down to eat together. We discussed the history of the X Men. As you do.

I also cleaned the house, the car, cut the grass and started digging the garden.

 

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