I do like to be beside the seaside

But it seems that my kids did not inherit the beach gene; either that or they had a surfeit of beach during those long lovely summers spent in Wexford when they were younger.   While I pine for sun, sand and sea during the sweaty summer months, they enjoy an indoor city life.  So I decided to have my very own summer holiday on the day that the two younger ones returned to school.   The very second that their buses vanished around the corner, I grabbed my beach gear, jumped in the car, and headed for the coast.  I didn't stop to check the diary.  Oh no!  Nor did I look at the "to do" list.   That was for later...   And before 9 o'clock I was looking at this:

The beach gear was pulled on:

And I was off.   Heading straight for the water.  It was cool, breezy and bright.  Just me, the rocks and the seaweed.  Plus a few Gulls and Oystercatchers who kept a safe distance from my camera.

As I paddled in the sea and clambered over the rocks I wondered why the health service doesn't prescribe a day at the beach instead of a bottle of pills?  I swear it would work better and the side effects are only positive too!

I could've stayed all day, the sandy lanes branched in all directions with glimpses of blue water beyond the fields and between the bungalows.  Yes, bungalows!  Lots and lots of lovely bungalows.  Well actually most of them are not really lovely at all, they wouldn't win any prizes for style, but they're just what the occupational therapist would order for a severely disabled young adult...   And I saw a couple of coffee shops.  And a proper supermarket.  This place is definitely a contender for retirement bliss for Smiley and I.

The dream of living beside the seaside is still alive, and that's this week's reason to be cheerful.

Ojos World


I'm having a moment of blogging panic.  I published a post earlier today and I don't think anyone likes it.  That should be okay, except it's not, because this is no longer a little quiet corner of the inter webs. People read what I write, even when it's rubbish.  Even when it's badly written or melodramatic.  I feel their dislike and disapproval when the post sits there unloved and unshared.  I tell myself not to worry, because it's my blog and I should be able to publish whatever I like.  But it doesn't always work.

I want to run away and hide, but how do you do that on-line?

Then I feel tempted to delete this blog, perhaps to start again somewhere quiet.  It's become my youngest baby.  I love it, but I have to look after it too.  And it comes with responsibilities: because I waived my right to anonymity there are so many subjects that are closed to me, even though I badly want to write about them.  Perhaps without this blog I will be free?  It would be so easy to delete it, so tempting, all it takes is a few clicks.  I'm waiting for temptation to pass.  I hope it does.

Note: I'm turning off comments on this post, because I am just trying to explain how I feel today.

This week

'THIS WEEK' is a very melodramatic post that I wrote over the last few days.

This week I heard reports that a vulnerable young woman pregnant through rape was incarcerated and cut open to deliver a baby who was born far too soon to be ready for this world.  In Ireland.  In 2014.

This week I read about yet more women and children being killed in Gaza by Israeli bombs, and other women and children being buried alive in Iraq.

This week an American journalist was brutally decapitated in cold blood and filmed for social media to send a chilling message to the world.

This week I heard a Palestinian man say on the BBC News that alleged informers should be burned alive.

This week I read about fear and death stalking West Africa as more and more people die from the  ravages of Ebola.

This week eminent scientist Richard Dawkins suggested on Twitter that babies with Downs Syndrome should be aborted.

This week I heard about violent riots in the US after the shooting dead of an unarmed black teenager by police.

And I wondered if we have progressed at all as a species in the past 2000 years?

How is it that power is more addictive than kindness?

Money more seductive than love?

Control more desirable than cooperation?

And innocent babies grow up to be cruel sadistic killers?

This week I felt ashamed to be human.

Reasons to be Cheerful about Aspergers

After Monday's miseryfest my reasons to be cheerful this week are all about the progress made by my autistic/aspie 13 year old son (take your pick of descriptions, I've no idea what the PC one is at this stage).  It's been a much more peaceful summer this year, thanks to my decision to give him the benefit of the doubt and assume that he wants to please, and if he doesn't cooperate, it's because he can't, not because he won't.  There was a different focus too: I'm not parenting a boy any more, I have a young man hurtling towards adulthood and looking for the skills that will enable him to live independently and successfully when he reaches his destination.  He looks to me to teach him, and this summer we have had plenty of time to learn and practice and work on a few goals that he set himself.  And this is where we are now...

Taking Responsibility

Little things like suggesting a walk in the rain to make himself feel better.  He likes the rain.  It doesn't do a lot for my hair though..

He's taking care of his things too, folding his clothes carefully, making sure that dirty ones go in the laundry, and even drying his own hair - not in a metrosexual way but because he's worried that damp hair might damage his headphones.


Since the holidays began he has made his own breakfast and lunch with minimum mess and is trying some new foods too.

Back to school

He's planning ahead for this, including earlier bedtimes in the run up to the start of term.  Though I *may* have planted this idea earlier in the summer...   However, he was the one who decided to get up as soon as he wakes up.  Impressed?  You should be :)

Chores and errands

Every boring household task is more bearable with company so his help has been great, and he's learned lots of useful skills too, I even taught him to iron, though he hasn't practiced that one too much!  He's also happy to go on errands in the local area, posting letters or buying milk, though it's scary sending him out without a mobile phone - he refuses to have a cheap one and is holding out for an iPhone - and we haven't resolved that dilemma yet.

Hopefully this will be my last post about my son.  Because hopefully I won't feel the need to write about life with Aspergers, except in a general way.  And that is a reason to be cheerful too.

For more information about Aspergers, there's a new website AsIAm, which was established by teenager Adam Harris, and has a positive take on Aspergers, and lots of useful resources for parents, school students and teachers.

Ojos World

Respite Day

6.30 Quick coffee, then up, washed and dressed to clear up the worst of the mess before..

7.30 Home help arrives to help me get Smiley up.  Run around cleaning while Smiley has breakfast.

8.30 Eat own breakfast and chat to my daughter.  Look at Tweetdeck together.  It moves, so it must be fun.  Sort out other children.  Read Respite social story.

9.15 Bring daughter to meeting with son's autism service providers.

10.45 Return home and do Mum things

11.15 Pack daughter’s bag for respite.  Toilet her.  Read respite social story again.

12.15 Frantically start making daughter’s lunch in case bus arrives at 1pm.  Hoist her.  Make coffee to quiet grumbling tummy.

1.30 Make dessert for daughter as she is looking a little sad.  Have toast for lunch as totally starving.  Plan to eat healthy food tomorrow.

1.45 Still no sign of respite bus.  Do more Mum things.  Read Respite social story again, just in case.

2.00  Bus arrives!  Waves goodbye to Smiley.

Looks at "To do" list.


Goes on Facebook instead...

Note: Am still finishing my Reasons to be Cheerful about Aspergers post...hopefully it will be done for tomorrow now

The boy I lost

I can see some of you spitting with rage already from the title of this post, but you don't HAVE to read any further.  It is going to be a bit of a 'poor me' post.  But it's not just about me, it's about my whole family and what we have all lost due to aspergers, now called autism.  I believe that my son has lost the most of all.

If you're new here, it might help you to understand why I've been such a misery guts here on the blog during this long long summer.

My son, Angel and a friend.  I was a working Mum then too!
Look at that photo, observe the happy and screen-free teenagers having fun with a small boy on a beach, while their delighted Mum takes lots and lots of wonderful photos.  Smiley is laughing just out of shot somewhere.  And the boy?  Well he's smiling at the camera, he's fit, healthy, happy, outdoors and loving life.  That's all gone.  And I never expected it to happen.  Even after his diagnosis with aspergers at the age of 8, I was hopeful that our family life could continue, with the help of a bit of therapy.  After all I was able to manage it with a severely disabled daughter.  But autism is different.  And so this summer was mostly spent sweating in a hot city kitchen.  Unpleasant at the best of times, worse when you have the menopause to deal with as well.  Secondary school students in Ireland get 3 months off during the summer, which is a long time even when you're 52.  Yet I guess I will have to endure this for another 5 years at least, and by the time it's all over I will be too old and tired to care.

I hate myself for feeling like this when I know how many autism parents are dealing with far worse: regular violent destructive meltdowns that go on and on and on, scary seizures, smearing, and children who barely sleep or who bolt towards the nearest road or river as soon as your back is turned.

So I've been putting on my happy face for my kids, who seems to be fairly contented, and for my friends when I meet them, because there's nothing worse than being around someone who is negative all the time.  Anyway, trying to be happy for others makes me feel better.  In the moment at least.

If the teenagers go back to school as planned next week, then I will hopefully have time to sort out my still undiagnosed lung problem, and once that is fixed I will be able to exercise again which will improve my mood, as will getting back to counselling, and of course the yoga classes that have become one of the highlights of the school week.

And THEN I hope to write some more cheerful and entertaining stuff on here!

If you managed to wade through all this, I recommend that you now head over to Jazzygal for an inspirational post about staying positive while stuck in a hospital bed in extreme pain.    And if you come back here on Thursday I promise another positive post in the reasons to be cheerful series, and this time it will be about autism achievements this summer.  Just to balance things out...

Dancing in the Street and other reasons to be cheerful

Just two weeks left until school starts again and I've achieved very little, even though the goals for the summer were not exactly ambitious.  But there have been some lovely moments too, and I'm about to inflict some of them on you for this week's reasons to be cheerful...

Dancing in the Street

I still have this dream about moving to a little bungalow by the sea when Smiley is older, but these past few weeks I've caught myself wondering if that is actually a selfish thought, as I watch her joy and delight at being in town.  It really is her favourite place to be, unless there's an actual party, or basically anything with people and music.  Here's 23 seconds of one of the buskers on Dublin's Henry Street and Smiley's reaction.  So then of course we had stay and watch and dance.

Where I live is convenient, pretty safe and fairly suitable for a severely disabled adult after all the alterations, so perhaps I can find a way to make it pay its way once my eldest and youngest have moved on.  Perhaps we'll just drive to the coast when I feel the need.  After all, Smiley has a PhD in car dancing already.

An almost perfect Saturday

A wonderful day trip to Powerscourt organised by the Irish Parenting Bloggers Group was followed by a movie night chez Blue Sky with two of Angel's friends.  Girl talk.  Normalcy.  Chatting about boys and clothes and TV programmes and everyday thing.  So calming that the bottle of wine remained unopened in the fridge.

And then I went out for a meal with friends on Monday night too!

Woman Power

I just have to mention the best 30 minutes or so of live TV I've watched all year... You may remember that I still do a little running and I get to watch it occasionally on Smiley's telly.  Well thanks to twitter I switched on for the Women's 10,000 metres final in this year's European Athletics Championships.  I was planning to cheer on Ireland's Fionnuala Britton, and she did run a great race.  But Britain's Jo Pavey ran a better one.  To watch this superb athlete, who also happens to be a 40 year old Mum of two destroy the rest of the field over the last lap made my hairs stand on end.  It was amazing, in so many ways.

The money tree

Perhaps it does exist, because not one, but TWO unexpected and mysterious cheques popped through my letter box this week.  One from Revenue, and I didn't think they ever gave money back to anyone. The other was from my previous broadband supplier, which apparently charged me to change supplier, and have now been told they can't do that.  So maybe some of these much maligned Regulators do occasionally do something useful.

This means that I may be able to justify a little light shopping which should make Smiley even more smiley and I can't think of a better reason to be cheerful than that!

Thanks to Jo at Ojo's World for hosting Reasons to be Cheerful for this month xx

Ojos World

Mourning Robin Williams and wondering what will happen now

I don't normally cry over the death of celebrities, but I'm a bit hung over this morning, thanks to a wonderful night out with a couple of very good friends, when we touched on old age and grief and that which lies ahead.  Yet the apparent death by suicide of Robin Williams, has hit hard, and I'm breaking another rule by writing about it.

Perhaps it's partly because he was so full of life, that it seems impossible that he's gone.  And I really do hope that he is at peace now in a better place.  Perhaps because I always adored Dead Poets Society, about the power and passion of words.  Something I get.  Perhaps because he may have died as a result of depression and addiction, both of which have touched my life in different ways.

I admitted to feeling very low last year.  I'm reluctant to say I was depressed, as I regard myself as fundamentally optimistic, but situations can take me to dark places.  There are days when I miss my Dad so much that I wonder what I would do if I didn't have three children who need my care so much.  And other days when the needs of two of them become so overwhelming and I see no hope of that changing and I feel I'm failing as a parent anyway, and I wonder what is the point of my life?  But I do find comfort, mainly from cheesy quotes from books and songs...

What will happen now?

Will friends take the difficult decision to reach out and contact those they know are struggling?

Will the often orphaned mental health services finally get the funding and support that they need?

Will his death help those whose lives look good from the outside to admit that they are depressed despite having the trappings of a perfect life?

Will people stop using the cliches?

“Suicide is a permanent solution to a temporary problem”

That's fine if you're not feeling suicidal.  If you are, it may just feel like another slap in the face, as though no-one understands you at all.  And some problems are not temporary, they're long term, or they're terminal.  So please, stop saying that.

Negative things could happen too.

Will some be jealous that in death he is almost universally being praised for his achievements in life, where others contemplating suicide know that they would just be condemned as selfish when they leave loved ones behind?  Which could make them feel worse?

Will the manner of his death give others 'permission' to finally take that dreadful step that they have been considering, perhaps for years?

Will there be lots of tweets and blogs and a 24 hour marathon of on-line mourning, and then we'll all go back to talking about house prices?


Will more people come forward, will they finally find the courage to ring a help-line, tell a friend, or a stranger, and find a way through the dark tunnel until they can see the light at the end.  Until they can find reasons to live and love again.

If you love someone who is struggling with depression, watch out for them in the days ahead, they may need you, or they may need services like these:

Pieta House


Follow #depressionhurts on twitter

 Finglas Suicide Network

 Samaritans - which now has a new FREE phone number in Ireland — 116123

Freedom, my car, and a trip to Powerscourt

Yesterday I performed another Great Escape, this time to the beautiful Powerscourt Gardens.

I'm becoming quite a Houdini, but it's a habit I rather enjoy, as you may have noticed!  Only two of us went in the end and, as we cruised south towards the sun with the music turned up and Smiley dancing in the back, I randomly began to think about driverless cars, and why they worry me.  But bear with me, there is a point to this...

Technology was supposed to help free up our lives, but it is also becoming a tool of coercion, surveillance and control.  Despite all the ever increasing rules around driving, a car still represents freedom for many people.  Even when your car is as ugly as mine!  Would I still be able to escape for a few hours under a driverless car system?  How much technology will be built into the vehicle?  Eventually could a central control system ration access to busy roads?  Limit our use of our cars?  Control the routes we take?  Obviously they would control the speed.... you can just imagine what'll happen: five minutes of fog and every car in the country will be made drive at 10 m.p.h. for the next 6 hours, just to be safe.

My brain would explode.

Yesterday the drive was perfect, and so was the day.  It was a meet-up organised by the Irish Parenting Bloggers group as well as an opportunity to explore Powerscourt and see how it coped with a severely disabled 17 year old in a wheelchair adult buggy.

Rather well is the verdict.  We weren't wearing 'I am a blogger' badges, and there were lots of visitors so the attention and help from the staff was an absolute joy.  Even the first impressions were good:  a couple of shaded, spacious and empty disabled spaces just next to the entrance...

Myself and Smiley were ushered through our very own entrance into the gardens - and it wasn't miles way from the main drag either.  There's a guide to the Gardens with a specially marked route that is suitable for wheelchairs.  Very helpful, but it does leave out some of the more beautiful parts....so I ignored it, and with some helpful buggy pushers we negotiated the 'hills'.  Not to be recommended in the rain perhaps though.  The whole place is a wonderful open air natural play ground and there were children running and rolling and jumping and climbing in all directions, which made my daughter very happy: she didn't know which way to look!

There were unexpected water features...

Water lillies...

A glorious fountain...

Then it was time for lunch, and there was more help from the busy staff in the cafe and lots of room for wheelchairs and buggies. A special mashed meal was put together for Smiley, and they even hid dessert from her so she would eat her main course first. And I was able to find us a lovely spot to sit with a view and a cool breeze.

Sadly I didn't get to check out the disabled toilets as my visit to Powerscourt was cut short by a request to return home.  Thanks to having a car under my control, I was able to dash back in record time and sort things out.  Long may that continue...


I was given free entry to the Gardens in return for a review, but all views are my own.

The Facts Bit

Powerscourt Gardens is part of a huge and beautiful estate just south of Dublin in the foothills of the Wicklow mountains, and was recently voted No. 3 in Best Gardens in the World.  I always thought that it was far far away.... but it actually only took 45 minutes door to door from North Dublin.  There's a lovely website, but you have to log in to get the details of opening times etc - which is annoying.

Finally a huge thank you to Kate from Kate Takes Five for organising the trip, and to all the lovely bloggers I met on the day and who made us feel so welcome.

Blogging reasons to be cheerful

Once again, it's my blog that has given me lots of reasons to be cheerful this week.  When I started this unplanned project, I never ever expected so many readers.  I used to have posts with no views at all!  And sometimes I still 'hide' posts until someone leaves a nice comment somewhere so I know it's not complete self-serving rubbish.  It's a place where I can celebrate the good times and moan about the bad times, and no-one has to read it, so it's a safe place for me, and somewhere to practice my writing.  It's also a project: I like making it look pretty, I enjoy playing at coding and - I'll admit - I'm a little bit competitive, so any kind of recognition feels good....

Best Blog Post nomination

It was a lovely surprise when an email landed in my inbox last week to tell me that something I wrote  in June -  After I Die - has been included in the long list for best post in this year's Blog Awards Ireland.  But it is a voting contest, and if you like it, I would really appreciate a few votes, but I promise not to ask again on here!

You can vote here  Just click 'Looking for Blue Sky' and then click on the 'vote' button at the bottom of the page.

And take a look at some of the other great posts on there too, like these from:

At the Clothesline

Bumbles of Rice



Glitter Mama Wishes

and too many more to mention.

Irish parenting bloggers

Has to be one of the best groups on Facebook and if I have a spare five minutes I often head there first.  It totally takes my mind off whatever life is throwing at me on that particular day and I've discovered lots of great blogs and friendly bloggers, even if I have tights that are older than some of them, as I discovered earlier this week..  Not to mention blogging and review opportunities, meet ups, information and advice.  Thanks to all of you!

Instagram and Google Plus

How did I miss out on the fun of Instagram for so long?  Especially as I like taking photos, even though they are often pretty awful.  It's just so fast and easy to use, and somewhere else to escape to when I need a short break.

And Google Plus has finally let me set up the account that I always wanted... so I hope to be more active over there too.

I've new buttons up there on the top right if you'd like to see what I'm doing.

Check out some more reasons to be cheerful over at Ojo's World

Ojos World


I began to write this post in my head in the small hours of another sleepless night after reading about another special needs Mum who is finding it hard to get a break.  But my tired brain has forgotten most of what I wanted to say.  If I'm not careful, this post will join the other eight drafts  that I've begun to write since the beginning of August.  There's no time, and if I do get a few minutes to spare my mind just goes blank.  Or I want it to go blank, and escape for an hour with my latest fave TV series: Firefly, since you're asking.

My motherhood experience reminds me of the one time I ran the London Marathon.  It all started out so well, I was so excited and full of enthusiasm.  But as time went on, it got harder.  And though I'll hopefully be caring for Smiley for life, in most respects the finishing line of my motherhood experience approaches.  But when I reached the 20 mile mark on that amazing day in 1987, I "hit the wall" and I'm so afraid that the same thing is happening in my mothering.

Being a lone parent carer to two teenagers with different special needs is just simply overwhelming.

I tried to make a diagram to show how I spend my time - but you can't illustrate multitasking on a pie chart!  Right now I'm head dancing with Smiley as I type.  Thank goodness for auto correct.  I'm finding this summer so long and so difficult.  With two teenagers who are on screens the whole time unless I organise an alternative activity, and since they like different things, this often means one-to-one time.  Great for them yes, but it means they get a lot less of it.  Only the essentials are getting done: very little blogging, almost no blog reading - sorry!  I just cannot keep up and so of course my health is suffering yet again - as I hinted earlier in the summer.  Which means I'm more stressed. more tired and have to find the time and babysitting cover for medical appointments for me on top of everything else - I'm back at the hospital again today...

I'm not looking for pity.  I'm not a special parent, I'm just an ordinary woman whose life has taken an unexpected turn, and I'm dealing with it as best I can.  And I often feel that the Government, all their agencies and the rest of society are happy just to leave me to get on with it, at least until there is a crisis.   But like the Duracell clockwork bunny, but even carers' batteries run out eventually, if they don't get recharged.

And yet I know I'm luckier than many.  This tweet from wonderful special needs Dad Eric Olson @PressureSupport caught my eye recently. "Every night. 9pm. Got it down to three minutes to draw them all up and mix what I have to. It's a…"

It's not just me, it's a worry for the whole special needs community too.

Earlier this summer when the on/off Garth Brooks concerts dominated the media, and the Irish Government put in a huge effort to make them happen, I came across this quote from a fellow special needs parent:

There has been a steady increase over the years in the number of severely disabled children with complex needs surviving beyond early childhood. Thirty years ago most would have died in infancy. Medical advances have now prolonged life, but have not been able to guarantee its quality. Once the hospital has done its best and pushed the child out into the community, the burden of care falls on parents. Parents of such children now find themselves handling complicated medications, tube-feeding regimes and specialized life sustaining equipment - day and night often unaided for very extended periods. There appears to be an assumption out there that this sort of thing can be managed by ordinary people on an on-going basis. It cannot! There is no awareness in the community of the very high level of support that such parents need and little co-ordinated attempt to provide it. No parent will give up on a child, but the stress levels involved in some cases are ultimately a threat not only to parents, but also to the on-going welfare of the disabled child. I am sick hearing stories of the cack-handed approach of the HSE and other statutory bodies to providing back up services for such parents. Parents are told nothing about how to access services. They have to do the research themselves. They are constantly coming up against bureaucracy and incompetence, delays in provision, unco-ordinated action and bad manners - all the while struggling to support their child. It is a thorough disgrace which calls for urgent action.

We say it SO often, but nothing, NOTHING ever seems to change.  Until we burnout.  And something bad happens.  Then society beats its collective breast for a few weeks and the Governments establishes yet another commission of enquiry to find out what happened.  And then everyone forgets again.  Until the next time.

Note: permission obtained to reprint the quote and tweet.