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?

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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.

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ACCEPTANCE WITHOUT MENTIONING AUTISM

Autism has dominated the ups and downs yet again this week. I’m glad that autism awareness month (April) has finished because I get upset that so many people are so aggressive about autism awareness and acceptance and I can’t listen to them.

So it was wonderful to realise that one of the characters in this book probably has autism, even though the word has not been mentioned so far. He is a clearly a little different, but his brothers and sisters just accept it, work around his differences and help him to exploit his strengths. I’ve not seen a better way to promote autism acceptance than this. In this story, he’s just another kid.

No big deal is made out of it. No-one is angry, no one is preaching about how he should be labelled or not. No-one is prescribing treatments, He is just a part of the family. I’m loving it! Though he hasn’t had any meltdowns yet…

 

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THE BEST AUTISM CONFERENCE EVER?

I was as excited as a small child going to her first birthday party. I’d bought the ticket forAsIAm‘s first autism conference back in December with no notion of how I was going to get a whole day away from the kids. But with the help of my wonderful babysitter and my eldest daughter, plus lots and lots of lists, it was done. And all went pretty well, except when I got one panicked phone call after lunch when Smiley got stuck in the hoist.

From the start it was clear that this was going to be a very special day. There was a stellar line up of speakers including the witty and wise Dr Peter Vermeulen, and the inspiring authorYvonne Newbold who has raised three autistic children and is living with incurable cancer, plus well-known psychologist David Carey; founder of AsIAm, Adam Harris, and many more.

 

Read more here.

 

 

HOW TO HELP A CHILD WITH AUTISM

Because even if you’re aware of autism, accept autism and understand autism, most autistic kids need extra help to navigate childhood successfully. And most parents need help too. Maybe some autism parents are able to instinctively parent their child. Most of us cannot.

But to work out how to help autistic* kids, you first need to ask “what is autism?” And there are as many answers to that question, as there are autism ‘experts’.

I would see it as a neurological difference that means that autistic people experience the world very differently and that can make it a frightening, unpredictable, illogical and overwhelming place. Lights really can be blinding and sounds deafening, people confusing and danger seemingly around every corner.


Of course, this is what I think right now – ask me again in a year and I could tell you something different. And hopefully, less negative too.

 

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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.

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A TOUCH OF AUTISM AND SOME REASONS TO BE CHEERFUL

Autism nearly broke me this week. Not my son’s behaviour, but the response of the world to it, especially the education system. By Thursday evening I was doubting my judgement, my parenting, and the evidence of my own eyes. Thank you to all the friends on Facebook and Twitter who put me straight and their ongoing help is my first reason to be cheerful this week.

 

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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.

Read more here

 

 

BLOG GOALS FOR 2016

Apparently this is a thing now. But I’ve never had goals for my blog, it has always been a hobby, somewhere to let off steam, practice my writing, express my thoughts and frustrations, and create something interesting, entertaining and even pretty. I like trying to keep up with current trends in blog design, and who knows when that knowledge and experience might prove useful?

I enjoy the perks of blogging – the outings, events and freebies – and my relationship with Netflix continues, so there will be more posts about what we are watching.

I’m also frustrated – most of my life and my thoughts are occupied by my children and their needs. But as you know I try not to write about autism any more, unless it’s in a very general way. Which is hypocritical of me because I now feel starved of useful information, as almost no one else writes about teenagers with autism either, so I’ve no idea whether things are “normal” here or not. And thank you to those rare parents who do write about their teenagers, you help me and my children more than you will ever know. But I dare not link to you here in case you get a backlash from the parent haters.

Yep, I’m mentioning them again.

 

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THE UPS AND DOWNS OF CHRISTMAS

Christmas morning was almost perfect. A gentle start with none of the children awake before 7. We all gathered in the living room, a feat which involves rearranging furniture and pushing Smiley’s wheelchair up a couple of steps too, so is reserved for special occasions until I get my act together and make more of this house accessible. Anyway, back to Christmas. The presents were opened at a leisurely pace. Smiley loved the family time together, my eldest added the sweetest note ever with the present she gave to me and it was lovely to see her delight when she opened the surprise presents that I got for her. And my son was calm and happy with his presents.

Read more here.