Carers need to have fun too

Well we do, especially if the sun is shining and you don't have to spend all day indoors. Of course I probably should have been doing something useful...

I could've been the perfect autism parent and spent the afternoon tellingbribing, encouraging and negotiating with my son to study and do all the other things I like to see him do every day. But that would have made us both stressed and miserable.

An almost perfect weekend

As time creeps inexorably towards the summer state exams, life here feels like a car crash in slow motion, but rewind to last weekend and things were very different.

The sun was shining for a start, and the pressure was off too. Much as I love Smiley's Club, now that it's over for the summer, it was great to let her relax with her favourite videos on Saturday afternoon. Especially as she was still struggling with a head cold. Earlier we had been in town bringing my son to his drama group, so she did get out of the house. And so did I!

Smiley also went to sleep early, and that meant I got to make my son happy by watching an entire film with him: Avengers Assemble, in case you're interested.

On Sunday my weather App told me to head out early if I wanted to miss the forecast rain, so we did, and Smiley and I spent a lovely couple of hours pottering around Dublin's Grafton Street, listening to the buskers, taking photos of the sights and laughing at the antics of the ducks and pigeons in St Stephen's Green.

The only thing missing from the weekend was my first born: Angel was away in Limerick judging a gymnastics completion. Apart from that, it was almost perfect.

I'm linking this up with Reasons to be Cheerful, hosted this month by Michelle Twin Mum.

R2BC at Mummy from the Heart

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?

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.

The Assisted Decision Making (Capacity) Act will enable people with disabilities to make decisions about their own lives with as much help as they need to do that.

Both of these new initiatives are likely to transform the lives of those with physical, sensory and mild intellectual disabilities, but it seems from reading the documents that people with severe, profound and complex issues were barely considered at all.

I fear that these proposals will diminish the lives of people like my daughter, because the community cannot cater for them, and because the huge additional workload on carers will mean that parents will be able to spend even less time with their adult children, and ultimately will not be able to cope with the additional stress and pressure. Back to residential again.

And just to say it again: I want my daughter to live at home with me for the rest of my life. But we need support, I can't do this on my own. What we DON'T NEED are policies imposed by people in ivory towers who know nothing about how we live our lives on a daily basis. We need supports that work for us. We need to be treated as individuals.

In some ways the whole basis of New Directions policy is questionable. If my daughter did not have disabilities she wouldn't be 'based in the community'. She would be at College or heading into the city to work. There's nothing normal or natural about this policy and they will be putting people like my daughter into a community that mostly consists of the very old, the very young and those who are not in the paid workforce. A community that is not ready or very interested in her, and certainly doesn't have the facilities to cater for her needs.

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.

Feeling the love

I'll draw a veil over the on-going sh*te that is the world of special needs to focus on the good stuff for this week's reasons to be cheerful hosted this month by Michelle Twin Mum. It may be a short post though!

House Hunting

I've always been fascinated by houses. I used to draw up house plans (my Mum kept boxes of them in the attic) and sketch door knobs and windows, anything of interest, when we visited other towns, especially beautiful Bath. Moving to Ireland meant I could indulge my interest every week through the property supplements in the national papers and now I can escape to on-line house hunting heaven at any time of the day or night. And sometimes I do, especially as the idea of moving to somewhere smaller and more manageable really appeals.

It could be a fresh start, a chance to create the perfect home for my daughter and shake off bad memories and disappointments.

But the thought of moving is scary too. Will it be a safe area? Will there be good broadband? Will a developer build houses in the field out front? Then there's the fear of losing my support network of doctors, babysitters, hairdressers, all those essential people that help us to live our lives in comfort.

Sometimes I look at houses and apartments in the city, but I also dream of moving to the country. Originally Wexford, but that ship has sailed. Now I'm being a bit more sensible and considering bungalows and cottages within easy reach of Dublin, and sometimes I go and look at one in real life, and explore the area, just to enjoy the space, the peace, the birdsong and the big skies above.

And so it was that I found myself one sunny morning heading out in the car to look at a run down bungalow near the coast.

Though this one did have a distant sea view...

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...

Half Full or Half Empty

Positivity is the thing right now, sometimes exhaustingly so. I'm very happy for those people for whom it works, but sometimes I find it all too much. And I know that I'm not the only one.

Positive people are said to be brave, especially if they are dealing with extreme difficulties in their lives. But sometimes I think that admitting that you see the world as a glass half empty is ever braver, because apparently many people don't want to hear that. We're supposed to be perkily positive at all times, maybe not always for our benefit. Sometimes I wonder if it's more for the benefit of those around us.

Yet as we suppress our true feelings, we're being told to validate the emotions of our children. Hmm.

And just try posting on Facebook that you're having a bad day. What do you think will happen? You'll be told to cry it out. Confusing, much? And I don't like crying. It makes me feel weak and vulnerable and obviously I don't want to do it in front of the children.

(Which is why many mums claim to cry in the shower, something I find very sad.)