WITH AND WITHOUT YOU (A DAY WITH SMILEY)

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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

CHERISHING ALL THE CHILDREN AND THE 1916 CENTENARY CELEBRATIONS

We were late to the party, and it was only in the last week that I heard about the big Dublin Parade for the centenary celebrations of the 1916 Rising. I should have planned in advance, but I was a wee bit busy with other things, and the morning did not go quite to plan.

Despite that, Smiley had a great time soaking up the atmosphere, and she made it her mission to spread joy and happiness on the streets of Dublin. But we couldn’t see anything or get anywhere near the disabled viewing spots, there were barriers to cars and people in every direction. So we gave up and went for coffee instead. Only to find out later from the TV coverage that many people with disabilities were allowed to watch from in front of the barriers. But no-one suggested that to us. It was all a bit frustrating.

And I was reminded of the words of the proclamation about cherishing all the nation’s children, and of the real life barriers that prevent that happening for so many children, eloquently expressed this morning by my friend Grainne from AsIAm.

Read more here.

REASONS TO BE CHEERFUL 18.3.16

So the Easter school holidays have begun, and the days are a bit less stressful. Smiley’s adult programme continues, so I’m still up at stupid o’clock, but the pressure to get my son to school is gone, and I’m hoping to be able to organise some outings for the two of us. Especially as the sun appears to be shining and all is calm.

But first there was St Patrick’s Day. Smiley was at home, except we weren’t at home, as she was invited to take part in a local parade, once again. I *may* have shared most of the photos already, but just in case you missed them, here she is again, showing just what a great day she had.

 

 

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THE SECRET TO CARING

They sat in a row in the shopping centre, watching the passersby. They were quiet and good. They were adults sitting in wheelchairs. A carer stood behind them looking at her phone. I don’t know how long they were there. Perhaps it was only a few minutes, but it bothered me. Especially when I thought about my daughter’s future.

 

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IF NO-ONE WISHES YOU HAPPY MOTHER’S DAY

Of course it should be mother’s day every day of the year. After all we mothers are never off duty. We never stop thinking about our children, or doing things for them, whether they’re 5 or 25 (or even 55).  For most of us, Mothering Sunday is a day of appreciation. There will be breakfast in bed, gifts and cards, extra cuddles and kisses. And lots of lots of love.

But it’s important to remember those mums for whom today will be like every other day. Perhaps they are separated from their children. Not in contact. Perhaps they gave them up for adoption and do not know where they are.

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FEBRUARY

The drive to write has mostly gone. As I predicted.

The pills have done their job though. Feelings have been mostly squashed, so I’ve been a lot calmer, more productive and handled people and situations like a proper grown up. At least some of the time. There is now a brake on the urge to spill and I’ve realised that time sorts out most issues. Of course that can mean years, and I suspect it will in the case of the biggest worry in this family.

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THE LAST BIRTHDAY PARTY

Looking back on old photos can be bittersweet. Especially when you have children with special needs. So many of us hope to carry on with family life as normal, and at first we think we can. And perhaps some families do.

But many differences become more noticeable as time goes on. More and more time has to be spent looking after their needs and attending appointments. Meantime other children grow older, and grow away from your child.

There are two moments in particular that stand out for me. One was a letter offering a secondary school place to Smiley at the same school attended by her sister. I cried. You see for several years I’d assumed that she would go to mainstream school. I checked them out for wheelchair accessibility. I put her name down on the lists. In the intervening years filled with battles with the State to get her any education at all, I’d forgotten my early optimism, until I got that letter.

The other time was much earlier, just before the battles began.

It was the occasion of her last birthday party.

When she was three.

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ALTERNATIVES TO SCHOOL FOR TEENAGERS

It’s a new year, a new term, and for many families, another round of school refusal. You have desperate parents, miserable teens, and an education system that seems to want school refusers to disappear. And sometimes that’s the answer. When every option has been tried and school is still not working, sometimes parents, teachers and teenagers have to make the decision to do something else.

In Ireland it is mandatory for children to receive an education up to age 16 or after taking the Junior Cert State Examinations, whichever is later. But there are options for teenagers who leave school earlier and here are some links to explore:

 

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