Sunday, August 24, 2014

Panic

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.




Friday, August 22, 2014

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.

Food


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





Thursday, August 21, 2014

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.

*Groans*

Goes on Facebook instead...


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




Monday, August 18, 2014

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...

Thursday, August 14, 2014

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







Tuesday, August 12, 2014

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?

Or


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

Jigsaw

Follow #depressionhurts on twitter

 Finglas Suicide Network

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