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..

Thursday, April 3, 2014

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

Monday, March 31, 2014

Putting the fun into special needs awareness with Square Peg Clothing: A REVIEW

I'm not normally given to sporting slogans on my chest, or logos, or any words at all in fact.  Unless I'm out running, and that could be because many of my T-shirts are ragged remnants from the 1980s that I can't bear to part with.

But I've noticed a new thing:

Lot of companies selling T shirts and other stuff designed to raise awareness of special needs.

But most of them are pretty naff.  The colours are bad, the shapes are unflattering, and the slogans make me cringe.

And then I found Square Peg Clothing.  It's a not for profit family enterprise based in Sutton Coldfield that produces the cutest range of T-shirts and sweatshirts for children and adults.  Their logos certainly put the fun into special needs awareness!  And the prices will put a smile on your face too, as they start from just £10.

So I begged for a couple of items to review to celebrate reaching another milestone on here, and they very kindly said yes.

This is what they sent:

The grey one is mine!  Promoting autism awareness for my son and also possibly for me, since some people think I have Asperger's Syndrome too.  I love it, it's soft and snuggly and warm and comfy, everything a sweatshirt should be.  I hope to be wearing it for years.  No photos though.  I've posted quite enough selfies in recent weeks...

So where better to try them out than our Saturday social club where we could share them with other special needs parents?

Smiley was VERY pleased with her new sweatshirt!

And it survived being chewed, washed, tumble dried and still looks fabulous.

Autism Awareness  

It seemed like a good idea to post this for autism awareness month in April, but not everyone agrees with it, and some won't like the clothing featured here either.   I actually think that more autism awareness is needed.  There are still people who have not heard of autism, and there are plenty more who don't understand it.  I would be one of them, at least in part.  And it's very hard to accept and embrace something that you don't understand.

For the next 30 days there will be lots and lots of stories and pictures about autism, inspiring and entertaining, dull and serious, sickly sweet or angry, depressing or scary.  I'm guilty of writing stories like those too.  So why not have a laugh at it all?  Don't they say that laughter is the best medicine?  I bet they do at Square Peg Clothing.

Sunday, March 30, 2014

They remembered!

And I want to remember that they remembered, so that's why you're getting this photo today.

You see my children rarely watch TV or listen to the radio, and they've mostly been at home for the past few weeks, so I think they did quite well to remember Mother's Day.

Or it could be that they want something....