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.

Symbols of hope and a Swimtastic success

I've gotta draw a line in the sand and find a new way to be an autism parent so that I don't ever lose the plot again.  Am really hoping that reasons to be cheerful will help...

Symbols of hope

Every single flower in my old pots died this summer, apart from one, and it makes me smile when I'm out the back.

Losing the plot (Part 2)

I knew that this summer would be challenging, but I expected to be able to manage things. Life is not like that though, is it?

I was prepared, plans had been made, set up with consultation, but many of them are falling apart around me.

I dumped some of my worries in the virtual lap of a couple of friends, which was very wrong, especially as they have enough serious problems in their lives already. I hope they will forgive me. I even took drastic action to prevent myself from being tempted to do that again.

People are being very sympathetic about the problems that they recognise: like Angel going abroad for a job interview, and I haven't even mentioned the ones she's done on Skype. I'd say that she will be clocking up the airmails before this year is over. In a good way too, as I'm sure that she will be home to visit us.  I'm not afraid of losing her: the close bond we had from the moment I saw her little shock of black hair only wavered for a few months during the teenage years, and now it is as strong as ever. I will cope.

When you need an "inspirational" post...

When times are tough,

And the road is hard,

No end in sight,

No time to pause,

No chance to turn back or turn off,

Make each day a fresh start,

And wipe the slate clean.

Yesterday is gone, it's done, it's set.

No matter what the challenges, what was said, what was done.

Who was hurt and how and why.

So put a smile in your voice as you greet the day.

Because you never know,

Today could be the day,

The day that everything changes.

Inspired by something I read on Facebook

Shades of grey

My son turned 14 this year and, stupidly, as the first stressful day without school drew to a close, I thought back to the summer of 06, the year my eldest turned 14. It was one of the darkest summers of my life, as my marriage finally fell apart completely. But there were also days of sun and joy and fun in Wales and Wexford, when my kids and I were a tight little team, who enjoyed each other's company and did everything together. I never imagined how far we would stray from those happy days. This year, July stretches ahead with appointments every weekday, each means that I seem to spend hours trying to plan the best strategy to ensure that they successfully happen. Sometimes they don't. Outings will be to the supermarket and the therapist, not the beach and playground. It's looking like a summer of dull grey days, no matter what the weather. There's no point in wishing for the holidays to end because they may not actually 'end' for either of my teenagers, with school officially ending for one and causing a lot of difficulty for the other.. On top of everything else I am eating far too much chocolate (and it shows). I badly need to lose some weight but how do I give up the only real indulgence I have right now? Answers on a postcard please.