There's a new party girl in da house!

It all began on Facebook with a pink glittery invitation to a 21st birthday party.  Smiley doesn't get invited to many parties, and this was a very special invitation from a young woman whose Mum introduced me 12 years ago to the Saturday social club that we still attend!

So out came her sparkly dress and pretty clips, her dietary preferences were organised - chocolate ice cream was ordered - and her chariot was prepared: I cleaned the car.



We arrived on time, for once, to see life-size photos of a certain well-known boy band at the door, giving us a good feel for the evening ahead!

Smiley was a bit apprehensive at first.  The faces looked familiar and the voices were friendly, but it had been a long time, so it was a while before she would look at anyone except me, and even longer before her famous smile began to appear.  But once it did, there was no stopping her.




You see there's always a special welcome from the special needs community.  First it was the parents, most of whom we haven't seen for a year or so, but they all came over, and they all said hello to both of us.  And once we were on the dance floor, the other young people did too.  They danced with her, and chatted to her, and she totally relaxed.  There were none of her funny habits.  No teeth grinding, no lip-licking.  Everyone said how well she looked, a big relief after the mystery sickness that we had to deal with last month.

The party was due to end at midnight, but Smiley started to look a little glazed around the edges soon after 10.  Time to go home.  After all she still has to get up before 7 for school - but only for another 12 months.  After that, who knows?  Maybe she won't have such an early start, and will be able to stay up with her grown up friends.  I see a lot more late nights in her future!

Of all my children it looks as though she is the one who got the party girl gene!  Now I just need to reactivate mine....



Things to ban to make driving safer

Back in the 1990s I used to spend a lot of time on the road between Dublin and Waterford.  Often my boss drove.  In those pre-motorway days his speed rarely dipped below 80 mph, and he always seemed to have a mobile phone clamped to his ear.  Even then I thought that was a bit mad.  So I fully support the idea of not talking and driving - or texting while driving.

But not holding a mobile phone at all?  Without my phone to guide me I'll be back to having a map spread out on the steering wheel.  But that's okay, obviously.

And twitter has solved my traffic jam anxiety, as it gives me something to look at when the queue of cars stops moving.  How will I now avoid road rage?  Maybe I'll take up smoking again.  Oh wait, they've banned that too.

So what else could they ban?

...All Mobile devices.  Because whatever you do, they make noise - an alarm might go off you know.  Today with the Gards doing their clampdown, I had to reach into the back of the car, get my bag, undo the zip and then pass it to my son to take out the mobile phone and cancel the alarm!

...Children.  They can scream, kick, throw things, fight, or demand without stopping for hours.  Very dangerous while driving.

...Food and drink.  Because clearly it's much better to feel dizzy and sick with hunger and thirst than to take a sip or a bite.

...Radio/CD players.  Because you should be concentrating on the road, not your favourite song.

...Election posters.  Now there's one ban I could support.  Thousands went up today in advance of the Irish local and European elections in May, and I'm sure I wasn't the only person looking at them.

If you have any ideas, I'd love to know...


She bit me

It probably happened more than once when she was little.  And yes, it will happen if you stick your fingers in her mouth.   But now she's 17, and this was an unpleasant surprise, and a little dangerous, as it was mid hoist.  Now I don't think that she was biting me.  She was biting something red and attractive - my T-shirt!  But it had the same effect.  I jumped and cursed.  It was so unexpected, as Smiley is generally affectionate and loving and happy.

It's nothing serious, just a bit of swelling and bruising and couple of puncture marks.

She didn't mean it, she was just biting, she wasn't trying to hurt me.  But it did hurt me, both physically and also emotionally, because it's upsetting when you get hurt by someone you love.  Even in a small way.

It made me think, once again, of all the other people who get hurt by those in their care.  Some may be caring for partners with dementia, some may be caring for children with special needs.  Some of them are my friends.

I'm learning to be more tolerant of the person doing the hurting.  Sometimes it's unintentional, sometimes it's due to overwhelming emotions, often there is no malice involved.  But there is still hurt, on both sides.  And there's still a need to look after the person who gets hurt.

I know that my loving daughter did not mean to hurt me.  But my first thought was "She bit me!  How could she?"





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,

Love

Mum xxxx



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?


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...

Understanding


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




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...



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:



Divergent


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




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..





Silent Sunday 6.4.14







The legacy

So officially I am an orphan.  I lost both my parents in the last ten years, and my grandparents many years earlier.  But they are not really gone, as long as I remember them. 

And I have many memories.

I remember them in my thoughts, on special days and when I go to lift the phone to my dad and then stop, or see young lambs in a field and think of how much my mum loved them.  When I see a dahlia blooming, I remember how proud my Granny was of the display in her garden.  Cream cakes and story tellers remind me of my other Nanny, a strong woman whose example and fortitude still inspire me today.  My Grandad, who was the first person I knew who worked until his final illness, a charming sailor turned salesman.  He always had his 40 winks after lunch, followed by a small glass of whiskey placed on the special tray attached to his armchair.  My other Grandad was quiet but loving and musical.  

They also passed on some wonderful genes: ability at maths, music and map reading, late onset wrinkles and grey hair, flexibility, determination and stubbornness. 

After they died all I really wanted from them was a few special mementos, things that I can use or see every day, and think of them:

My Dad's books:



My Mum's sewing basket:


The bookcase my Grandad made:


The sheet music my other Grandad collected during his life, some of it played many times:



I wish I had written down their stories while they were still able to share them, but many of those memories are still there, I just need to find the time to record them somewhere, as well as all my memories of our time together.  But I am very grateful for everything they left to me.  It's a wonderful legacy, and thinking about it is my reason to be cheerful for this week.  

This post was inspired by a chat with Jazzygal.


Ojos World