Monday, April 21, 2014

A letter to my son on his 13th birthday

Dear Son,

First of all I want to apologise: I know I'm not the best Mum in the World, despite what you say. I'm still struggling with the impact of Aspergers, and its effect on you.  I got many things wrong when you were younger: so often I thought you were being bold, when you must've been unable to cope.  But you couldn't tell me. I really hope that it didn't spoil your childhood, but at all those smiley photos suggest you will have some happy memories at least.

I'm going to try and make it up to you over the next five years, while you are still in my care.  At least you seem to be really happy at home now.  That's a start, for you, and for your sisters.  And you have so much potential, with your intelligence, and curiosity, and interesting observations about the world around you.  I mean to help you realise it.  But only if you want to, of course.

There's so much more that I want to say, but I can't, because I promised to stop writing about you, and that's hard too.  It helped me to work through everything here on the blog, and I think it helped other parents to read it.

Sadly, the only accounts I've read about parenting teenagers with Aspergers have not been encouraging, at all.  I'm starting to hope that we will have a much better story to tell.  But it will have to wait until you are grown up enough to give truly informed consent.

Whatever happens between now and then, I want you to always remember that I love you very much.

Oh and I nearly forgot.

Happy Birthday Son,


Mum xxxx

Sunday, April 20, 2014

Raging against the system

It's funny the things that make you incandescent with rage.  A walk in the sunshine on Easter Sunday morning was spoilt by these posters, on every second lamppost.

Yes there is a cost of living crisis.  But it was caused by your party Mary Fitzpatrick.  It was caused by the polices of Fianna Fail.

Never forget.

They were the party in power who presided over the false boom, that meant that families bought houses they are now going to lose, when the rich got richer, but the schools and hospitals were still neglected, and people died because changes were not made.  Remember Susie Long?

Then there was the bank guarantee, which will drain the bank balances of ordinary people for years and years to come.

Thanks to Fianna Fail we now have a society where the young have to mortgage their futures to get through college, work for free during the best years of their lives and wonder if they'll ever be able to afford a home or a family.  Meantime the old die on trolleys in hospitals, and the severely disabled get a free nappy allowance of four per day.  Tough luck if you get diarrhoea.

Just like the UK, I predict that before long, there will be tens of thousands of people in Ireland reliant on food banks, probably run by private companies with well-paid chief executives, sounds familiar?  And Ireland is still a very rich country.  The signs are everywhere if you look: my eldest was taken out for lunch by her Dad to a very nice restaurant in Howth during the week.   He had booked, but it was so busy that they still had to wait for a table....

I regularly switch off the radio, because I cannot stand listening to most politicians, or anyone from Ryanair, the pensions, banking or insurance industries.  I don't know who to trust, who to vote for, or what policies to support.

But the one comfort is that there are others like me.  If you feel the same, make sure you read Liveotherwise, whose political posts and twitter rants always make me want to cheer.

Still, I am reminded that today is the day of the annual commemoration of 1916 Easter Rising.  Is this the Ireland that they fought and died for?

Thursday, April 17, 2014

A successful haircut and other reasons to be cheerful

A momentous decision has been taken in the past week, but it will be for the best, I am sure of that.  Still, change is always a bit scary and worrying, another good reason to go looking for reasons to be cheerful, hosted over at Ojo's World this month.  Why not join in?  You will feel better if you do, I promise :)

A holiday from school

The transition was a bit tricky, but now all is mostly calm as the Easter Holidays roll by.  No stressful mornings, plenty of time to get washed and dressed, make your own breakfast and lunch, help your Mum and tentatively try a few new things.  Or if you're Smiley, rediscovering your previous love of Tesco!

A holiday from work

A very long holiday too.  In case you weren't reading during the week, I quit my job.  Partly because I just didn't have enough time to give to the children.  Working from home is a great idea, but it's very hard to go off-duty.

Not working means that in my darker moments I do feel like a skivvy, but then I remember to be thankful that I am not living this life 20 years ago before the gods of social media brought the outside world into my very own kitchen.

I have great plans of course, involving all the usual things: getting fit, sorting out the house and the garden, spending time with friends, and a lot more time with the kids and being a much better parent. Not sure how I'm going to fit all that in...


The understanding of a friend, when arrangements had to be changed at the last minute this week.

The understanding of the wet room builder, who picked up fittings so I didn't have to, and always finished up before Smiley came home.

The understanding of the local hairdresser.  It's been a while you see.  We've been lucky enough to have had a wonderful home hairdresser for the past ten years or so, who did all our hair every couple of months.  Sadly for us, she is now in New Zealand.  So other arrangements had to made.  The discussions and negotiations began weeks ago, and finally it was decided that I would bring the children to a local hairdresser.  It's small and located in a side street so I never notice it, and had to ring to check that it hadn't closed.  It hadn't.  We were all a bit nervous, but the salon was empty and quiet when we arrived, and it stayed that way too.  It was perfect, and now my son is ready for the Easter weekend and a very special day on Monday....

Ojos World

Sunday, April 13, 2014

It was a dream

Saturday was the first full day of the Easter holidays.  Until recently that meant that I would be packing up the car to head to Wexford or Wales.  But no longer.  We don't go anywhere much these days.  So I should have lots of spare time, right?  But unlike other children, my younger two need more time and attention as they get older, not less.  Difficulties with secondary school have meant that almost everything else - the house, the garden, the finances, friends, exercise - has been put on the back burner.  On that first morning all the conversations with my son involved shouting, while Smiley refused to drink from a straw again - for the fourth time in recent weeks - and I had to use a plastic syringe to get fluid into her, 5ml at a time.  Yet I couldn't properly address their needs - because I was working.  Luckily Smiley cheered up later when we walked up to her club in the afternoon.  But I wasn't able to talk to my son properly until the evening, and that was only because I said 'no' to a  work request from a friend.  Sorry about that.

The teenage years could be critical for my son, and Smiley finishes school next year and faces an uncertain future, with a continual contraction of adult services.  It could be left to me to do everything for her.

But as my children's needs increase, and services are cut, I am getting older and more tired.  Perhaps I would be able to do this if I had the support that I had ten years ago.  But I don't.

My kids HAVE to come first, and right now the two younger ones need me more than ever.

So I've resigned.  I will miss my job: what's not to like about being paid to do something you enjoy, and learn more about social media, and help people at the same time?  But I do feel lighter.  One less pressure.

It looks like being a carer and holding down a job was just a dream for now.

Instead I have great plans to turn off the electronic babysitters and fill the Easter holidays with activities.  I'm off right now to make it up to my special girl by dancing to Britney with her.  See you later...

Thursday, April 10, 2014

Smiley's wet room and other reasons to be cheerful

Once again I am feeling overwhelmed by everything that's going on, and all that I need to do.  So why am I blogging, you may ask?  I'm a carer, and I don't subscribe to the view that a carers should put their own needs last.  My physical, mental and emotional health are very important, because if anything happens to me, what will happen to my children?  Not to mention the cost of care for all of us.

So here are my reasons to be cheerful, and yes, some of them involve me doing things for me...

The wet room

It's almost finished, and it's usable now, and I can already see the benefits for both of us.  Smiley now has total privacy when she needs it for washing, dressing and toileting.  While I can now use the hoist for every transfer, so hopefully my back will finally get a chance to heal properly.

The blessed gem

It's sunny and warm in Costa Del Dublin this morning, the perfect excuse for a slightly longer run, giving me the chance to spend a few minutes in this gem of inner city Dublin:


I only heard about this film thanks to @liveotherwise who wrote about it here.  But that was enough for me, and I'm off to the cinema shortly with my lovely daughter in tow.  I love it when blogging introduces me to new things :)

Ojos World

Tuesday, April 8, 2014

On a wing, and a prayer, and full tank of diesel

She sat in the driver's sear and looked at me expectantly.  It was one of those what do I do now moments.  Like when she lay in my arms on the day I brought her home from hospital, almost 22 years ago.

I'd thought that we were ready.

She'd got the licence, I bought the L plates, it was time to start the lessons.  Something I'd been putting off for a number of years.  It's supposed to be one of those activities that sends your stress levels stratospheric, isn't it?  And it's not her I'm worried about, it's me.  I'm the one prone to panic, while she is mostly calm and sensible, and she's 21, so no longer a crazy teenager ..

But where to start?  It's not like other parenting activities.  Fasten a nappy badly and it might leak, take a corner badly aaaaand @563*@%£&@^.

Driving is serious stuff apparently.  So naturally I headed for google and found the ultimate (free) guide to teaching your child to drive.  Printing it off was the thing, I didn't exactly read, digest and memorise.

Actually I barely glanced at it.  You know all the usual excuses: work, children, the housework, the 'to do' list.

And so I found myself in a quiet corner of the IKEA car park one morning when the younger children were in school.  We swapped seats, and then we began.

Deep breaths all round.  The key controls were explained.  She doesn't need to know about fog lights on lesson one, right?

The clutch was the main sticking point that day.  In more ways than one.

When driving has become as instinctive as breathing, how do you explain the way the clutch feels when it is engaged?

Still I must have said something useful as the car lurched forwards shortly afterwards to Angel's delight!  Eventually no more forward movement was possible, so I took control and drove back around the car park, and we did it all again.  And again.  And again.  It went pretty well.  I did read somewhere that stalling is bad for diesel cars, but I'm hoping that that is not true!

Especially as this has been a very expensive business so far.  As Angel says, the barriers to young people succeeding today are mostly about money, and being able to drive is a life skill that employers expect from graduates.  This is what I have paid out so far:

Theory Test: €40

Permit: €35

Provisional Driving Licence: €55

Insurance so she can drive my car: €1,200

'L' Plates: €5

That's €1,335, and 'only' another €500 or so to spend.  Because we still have to organise and pay for the official lessons and The Test itself.

Since that first day, we've moved on the bigger car parks, carrying passengers (well her sister anyway), and industrial estates, where we play dodge the truck.  Now she's even asking if she can try driving around the local area.  Where the neighbours might see her!  This girl is definitely growing in confidence behind the wheel, she'll be flying around in no time.  And I know that the Road Safety Authority would have us believe that cars are almost as dangerous as guns, but I don't buy that.  The prayers have not been needed, and I've barely had a moment of worry so far.  After coping with grief, a difficult marriage break down and now regular autistic meltdowns, teaching my daughter to drive is like a picnic in the park.  And actually I'm really enjoying doing some normal parenting, and spending time with her.  Until the diesel runs out..