A taste of freedom

Ojo's World

There's always new boats on the docks or in the river when Smiley and I are in town, but we just walk on by. Rarely are they wheelchair accessible. Then last Sunday I got the chance to tour a ship that was visiting Dublin, and so did my eldest and youngest, and we minded Smiley between us. It was a wonderful experience, doing something where everything was strange and yet vaguely familiar from TV and film. I could have stayed on board all afternoon asking questions, soaking up the atmosphere and the fresh air and just enjoying being somewhere different and feeling free.

You *might* be able to see how happy I am.

The Leibster Award

I haven't done one of these award thingies for a long time - but I love reading them and finding out more about the person behind the blog, so perhaps you feel that way too?

Thanks to All Past Midnight for this nomination. She writes a blog that I only discovered recently, and in her own words is a mid-thirties stay-at-home-mum to two children, one with ASD.

To take part in these things you're supposed to obey a set of rules, but I don't like obeying rules so I've broken some of them as usual...

Hopes dashed

Autism turned a corner last week.

This morning we've gone into reverse.

And gone back around the same corner.

Am heartbroken now, because hope can be a dangerous thing, as I've said before..

I'm not looking for sympathy, though strong medication might help. I know I need to cry it out and then grit my teeth and keep going.

Keeping going with the blog? Well that's a different thing. Especially as I promised not to write in detail about my son. We'll see. Perhaps blogging will be the perfect therapy...

Reasons to be Cheerful 23.7.15

Another exhausting emotional rollercoaster of a week, with lots of tears, but smiles and sighs of relief too. Not much time for blogging though, but I will always try to find the time for reasons to be cheerful. So here are my reasons for this week...

Baby essentials, 1992 stylee

A quote from my favourite baby book, optimistically titled The Fun Starts Here, by Paula Yates. And in those pre-internet days, baby books were pretty essential, especially if babies had been largely absent from your life until you held your very own new born in your arms. I loved this one because it was all about enjoying your baby, something that seems to have got a bit lost these days, amidst all the advice and strictures on what new mothers should and shouldn't be doing. Sadly I can't share any more nuggets of Paula's wisdom as my copy of her book fell victim to a recent decluttering session.

Why am I telling you this?

Well I was inspired by a linky over at Glitter Mama Wishes. She's doing a round up of baby essentials for the first year and I thought it would be interesting to look at how much has changed since 1992. And while I loved The Fun Starts Here, I did actually rely on quite a lot of equipment during those first 12 months.

Baby essentials, 1992 stylee, modelled by Angel.

Reasons to be cheerful 16.7.15

I delayed publishing this post today because I thought that I would have some really good news to add, but sadly it wasn't to be. But things have to get better eventually, don't they?

Anyway I'm not about to give up any time soon, so here are my reasons to be cheerful for this week:

Laya Healthcare City Spectacular

This wonderful free festival combines the Street Performance World Championships with lots of other activities to keep children entertained, occupied and fed. It had colour, noise, activity and energy, everything that my special young lady adores, and she was in her element during the couple of hours we spent there checking out the attractions.

My favourite act, so funny and not a word was spoken :)
Smiley's favourite act, but why perform in front of the loos?

The caring stereotype and why it makes me mad

There was an advertising feature about carers in an Irish newspaper yesterday. Perhaps you saw it? Perhaps it gave you a nice warm fuzzy feeling reading about that wonderful 'army' of 187,000 dedicated carers. Or perhaps, like me, it made you mad.

I am not in any way criticising the family that features in this ad, but it does fit the caring stereotype that society has come to expect.

A kindly, loving, sensible, middle aged women who cares out of love and needs nothing more than the occasional break for a bit of light shopping or drinking tea with friends and crafting Christmas cards.

And that is very admirable, but not all carers are like that.

Not at all.

Like the rest of society, carers come in all shapes and sizes and life styles. They also have different hopes and dreams and aspirations.

Some are still children, giving up the best years of their lives to help their parents or siblings.

Some are young women (or men) who care for children with special needs. They are fashionable and feisty, and respite may mean a chance to run a marathon, read a book all day, drink tequila all night, shop in New York for the weekend. Others have to give up careers that they loved and miss and cannot find anything in the home that replaces the intellectual stimulation of work.

Some are broke, but apparently 'carers don't look for financial reward'. Except that State payments like the carer's allowance is not a reward, it's an income, and a small one too. It's essential money to live on, as many carers cannot hold down employment.

Many carers are angry at society and the state, and their lack of care or interest. The idea that once people become carer, someone waves a magic wand and they suddenly become selfless saints is wrong.  Clearly some do. But many don't. They may become angry and resentful instead. Poor and depressed. They may feel as though there brains are dying, that real life is passing the by.

Sometimes this can lead to tragedies. We've all read about elder abuse and murder suicides involving special needs. But carers are caught in a bind. If they ask for help, they may not be given support. Instead they may be blamed, and their loved ones removed from their care, no matter what the mental, emotional or physical consequences for all involved.

Painting the lives of carers and their dependents in pretty pastels just prevents people from getting the help that they need. It may prevent both leading more fulfilled and happier lives.  A little bit of charity patronisingly handed out to make everyone else feel better is not the answer.