Silent Sunday 31.3.13




Reasons to be cheerful 28.3.13

Reasons to be Cheerful at Mummy from the Heart

I've not been a happy bunny this week, despite the promise of lots and lots of chocolate at the weekend. I've got Easter holiday cabin fever, and the news in Ireland and overseas has been very depressing.  Working women in Ireland are told they may have to go home if their childcare costs exceed their current salaries, the disabled and sick to bear the brunt of cutbacks in the UK, a rape victim in Ohio gets blamed, Gardai to be disciplined for a peaceful protest, and a website that is actually used by young people is vilified when some no-so-young people don't like some of the content.

So it's a good time to find some reasons to be cheerful:

CANCER FEARS

The lesion on my face that was removed in the same week as the colonoscopy and the smear, is not cancerous.  A huge relief, just waiting on the other results now, but they were routine tests, so I'm not too worried.

CHOCOLATE AND PHONES

Another package of phones arrived from my lovely friend in Slovenia for the Phones for AJ Appeal and she sent this too:



Isn't she thoughtful?

ASPERGERS, ANXIETY AND AWESOMENESS

My son has finally got over his fear of the bogey man in the local Tesco that he thought was trying to abduct him. It's only taken a year!  But at least we can now walk to the nearest  shops more often.  Now I just need to find a way to tackle his fear of the dark...

Like many children with Aspergers my son is fairly obsessed with gaming, and I'd never seen any advantages to this.  Until now.  You need to know that he really struggles with handwriting, and most of his written work is short and untidy.  But earlier this week I saw what he is capable of when given a laptop and a subject of interest: he'd typed up a 1000 word guide to building a character in the on-line game, Awesomenauts.  And you'd never guess it was written by an 11 year old boy - perhaps I'm finally getting to see the awesome side of Aspergers.

A SHOWER CHAIR FOR SMILEY

Finally we may have one, it's only been a year since the saga of the shower chair began, but it looks as though this one might work (and she was smiling just before I took the picture..)  Of course now the chair has to be sanctioned, ordered and delivered, which could take another 6 months, but hopefully it won't.


NIGHTS OUT WITH MY DAUGHTER

I still have to pinch myself to see is it really true that my 20 year old wants to go places with her Mum!  It didn't happen when I was young.  But we get on, we like many of the same things, so why not?  And  so we went to the cinema last night and it was lovely to get out :)

Reasons to be Cheerful is being hosted by Seasider in the City for a few weeks, so head on over if you want to read more positive stories...


March is Cerebral Palsy Awareness Month

And today is National Cerebral Palsy Awareness Day in the US.  I don't think that cerebral palsy gets as much attention as other disorders and I was unaware of these campaigns until today.  So I feel I have to do something to change that!

One of my all-time favourite photos of her x

My special girl has quadriplegic cerebral palsy and some other undiagnosed disorder, which together cause her significant physical and intellectual difficulties, which I plan to detail on the disability page on this blog - when I finally get it finished....

More about cerebral palsy here:

http://www.patient.co.uk/health/Cerebral-Palsy.htm



Would a savings tax be better than a property tax?

"Where is the compassion?" That was the question from a caller to a radio show yesterday about the new property tax in Ireland.  Where indeed.



We've all heard the cold hard intimidating voices of Revenue, telling us that they will take our money,  they will get tax, there is no-where to hide.

And other voices are joining in: another caller yesterday advised people to sell their houses if they could not afford the property tax.  Did he mean everyone who becomes unemployed? Separated? Old? Disabled? Poor?  Do they all have to sell the homes they have worked all their lives for?  Leave the communities where they have roots, help, support?  And there's the so-called 'hard' cases, like families who have adapted their homes for their disabled dependents?  Should they just sell up, and if they do, what will happen to their dependents?

Even if he doesn't care about people's feelings, what about cold hard costs?  Breaking up communities and forcing people or whole families to move may not be cost-free.

As I wrote before:

"Is the property tax the final insult to people who have worked all their lives to buy a house where they assumed they could live out their days?  Up until now you could have the electrics switched off and the bins uncollected, but you would still have a roof over your head.  One you chose, one you paid for.  Now even this is under threat.  For most people getting the electricity switched back on again is achievable, but if you lose your home there is a good chance that you will never own another one, and could become dependent on the State - and how is this going to help?"

What price social cohesion, mental health?

Internationally the Irish people have been praised for not taking to the streets in any numbers and protesting.  Perhaps it's partly because they still feel some security and comfort living in a community that supports and understands them.  Perhaps it's because most people are still living in their own homes.

If people have to leave their homes due to this tax - or due to to repossessions-  how will they feel then? Perhaps they will feel that they have nothing left to lose?  Then you might see real marches in the streets, real social unrest.  People who have nothing left may not hold back.

The pain of this recession has not been shared evenly at all.   It has left some people virtually untouched, and shredded the lives of others, as I predicted back in 2009.

The Irish property tax will just make this worse..

1. Geographical unfairness

Since the property tax is based on a notional market value of your home, a family coping with unemployment and negative equity living in Dublin may well pay substantially more property tax than a millionaire living on an estate elsewhere in the country.

2. Only the first acre counts

That will obviously provide further help to millionaires living on estates in the country.

3. Means are not taken into account

This is where I see red.  In theory I am not opposed to a tax to support local services, so long as we all get the chance to see where the money goes and can express our opinions in local elections.  But no tax should be levied on people who cannot afford to pay.

Means-testing everyone would be a nightmare, but there must be other ways to ensure that people can afford to pay this tax?

Could it be capped at as agreed percentage of net pay, say after the mortgage has been paid?  It's a self-assessment tax so why can't we just send in details of our income and tell Revenue how much we can pay them?

If we have to pay all this extra tax, then what is needed is FAIRNESS, and that means everyone contributing what they can afford.  Which is why I'm wondering why the proposed savings tax has been condemned and voted down by the Cypriot Parliament?  They say that it will 'punish' people who money into savings.  Um.  So isn't that just like the way the property tax 'punishes' people who put their money into houses?

Commentators are appalled that money is to be taken out of people's bank accounts.  But that is exactly what will happen here, if people can't or don't pay their property tax.  Apparently.  Their bank accounts will be raided by Revenue, whether the money is there or not.

It seems that everyone calls for fairness, for a sharing of the burden.  Until it affects them.  Is that why politicians are so against a savings tax?  Surely if you have savings then you can afford to make a contribution, or am I missing something?

Disclosure: I still do have some savings left...



All of the day and all of the night

No-one tells you the truth about parenting, do they?

BB (before baby) most of us hear the rumours about the sleepless nights with small babies, but we don't realise that it doesn't end there....

Before I tell you this story, you should know that I am feeling much happier this morning after a mixed weekend.

Saturday was great fun, thanks to Jazzygal.

Sunday was never going to measure up.  I had it all planned.  For the first time in several years I was going to take Smiley to the St Patrick's Day Parade.   I'd organised for aspie boy to be minded, and tickets for the disabled viewing area, following assurances that it was much better than the pen we were squashed into last time.

Then we woke up to this:



No way could I make Smiley watch the Parade in that, even with her ski clothes she would not be warm for long.  So we stayed in the house all day and I tried to entertain myself by messing around with my blog - hope you like the new look!

Obviously the weather doesn't have the same effect on the young, so Angel headed out early with her friends and off to an all-night party.

"See you tomorrow!" I said, as she headed out the door, all swishy hair and black leggings.

It began soon after midnight, with an 'urgent' text request from Angel at 12.30.  That was followed by unsettled dreams about people on twitter trying to contact me.  So much so that when I next woke at around three, I checked my phone.  Just in case.

At 4.30 I woke to hear rustling and banging downstairs.  My heart jumped.  Could that be a burglar filling a bag with loot?  Downstairs, near my special girl?

I slipped silently out of bed, donned slippers and glasses, and armed with my GHD, crept down the stairs trying to force my face into a fierce look.

"Who's there?"

Trying to keep my voice steady.

"Mum! I'm just having a snack, sorry I woke you."

"The party finished early then.."

Red faces all round.

Up the stairs I went again.  And at precisely 6.02 am I heard Smiley chattering on the baby monitor. There was just time for a quick coffee - essential so that I can get her up safely - and then another day began...


Respite, giggles and more messy medical stuff

It's been a long time since Smiley was in respite, and the last overnight ended in tears, lots of them.  But my social worker did not give up and by Christmas she had another plan.  A small respite house  in a country village where just a handful of children stay over together with a few who live there, and no agency workers, so Smiley could get to know the staff.  This sounded good and the first meeting left me feeling confident.  Smiley was relaxed and interested, so I booked her in for two sessions of afternoon respite to familiarise her.  The first time I went to collect her she was looking a bit worried and then gave a big smile when she saw me.  The second time she looked as though she wanted to stay.  And last night, she did.

The day before I wobbled, especially at bedtime when she just looked so happy!


There was lots of preparation, including a special social story with pictures, which the school and I used to prepare her for her 'sleepover'.  On the morning there was no time for anything except packing and list checking.  And then she was gone.

My day was very productive, starting with a visit to the surgery to get a stitch taken out.  But while I was there the nurse took a look at my chart and said:

"You're due a smear, will I do it now?"

What?

Panic time...

Brain went through rapid checklist:

Shower: yes
Clean undies: yes
Wax/shave: no

Eeek!

But after a week of embarrassing and awkward medical procedures, surely I could cope with one more?

So I let her.  And hopefully there will no more poking and prodding and scraping and cutting this side of Christmas.

Rather stupidly I filled the rest of the day with shopping - the boring kind - administration and work.  I did rent a DVD for the evening, but my son kept asking me to turn it down and the soft Scottish accents of the characters meant I couldn't hear half the story!  I missed Smiley, especially in the quiet of the kitchen, so perhaps staying home and doing chores is not the best use of free time.

Memo to self: next time Smiley is in Respite DO SOMETHING FUN.

The highlight of the day was a call at about 8pm from the Respite House.  Nothing was wrong, they were just ringing to tell me how she was getting on!  A second call in the morning confirmed that all went pretty well.  No tears, just lots of excited giggling, which was non-stop from 4.30am in the morning!

She arrived back to school happy, and there was more laughter this afternoon when we went for a walk, after a treat of mashed up banana muffins and custard.  So I'm almost afraid to jinx it but it looks like this new respite house is a complete success :D

My son also benefited. I slept in till almost 7.  My son got up at the same time.  By choice.  And only made me wait for about 5 minutes while he did his 'stretches'.

I do wonder if some of his 'difficult' behaviour is due to jealousy of his sister and how much time and attention she needs from me.  So perhaps more respite for Smiley could improve my relationship with him too?

Wouldn't that be wonderful.



Banana Buns for Busy Bakers!

Did you know that paper cake cases are a busy baker's best friend?  You *may* have noticed that my family love cake of every kind, but a life that involves running around all day after kids, to appointments and other meetings, last minute shopping, frantic dashes to the pharmacy as someone's prescription has run out - takes deep breath - is not conducive to the slow baking of large loaves and cakes.  Enter the paper cake case.

Because big things can be made small!

Due to the random eating habits of my children I often end up with too much food.  But not the food that they want to eat.  Obviously as their Mum I try to eat as much of it myself as possible, even when it's something I don't usually eat, like egg yolks or beetroot.  Which leads to some strange meals at times and lots of sludgy coloured soup...

This week it was bananas.  A bowl full of very ripe bananas.  With no time to make banana bread, so I invented banana buns instead.  They're very simple, because that's how my kids roll....

Banana Buns 

makes 12 large ones - use muffin cases

Ingredients

285g/10oz self-raising flour
110g/4oz butter
225g/8oz soft brown sugar
2 eggs
4 ripe bananas
1 tsp vanilla extract

Method

1. Oven on at 180C/350F/Gas 4.
2. Use a food mixer/processor to thoroughly mix together the butter, sugar and bananas (saves mashing)
3. Beat in the eggs and vanilla essence.
4. Fold in the sifted flour.
5. Spoon into the paper muffin cases and ideally put them in a muffin tray.
6. Bake in the oven until well risen and golden: about 20 minutes.

Delicious when still warm...


Surviving gastroscopy

I was feeling fairly miserable this morning.  No water, no coffee, very little sleep and wondering what I had forgotten to tell Angel about getting the kids to school as I left for the hospital in cold light of early morning.  But most of all I was worried about what would happen in the hospital.  But not the procedure you understand.  The fasting. The waiting.  The lack of information.  Worrying that you'd be the one they forgot.  Wondering when the procedures started.  Yes I should have asked.  Wondering if the secretary I spoke to really had the power to put me first on the list if I said no to sedation....

In the waiting room there was talk about the procedure and several people expressed shock that I was going to skip sedation.  Words like 'brave' and 'mad' were mentioned.  And I have been known to wish for mild sedation when life gets difficult at home.  But hospital sedation?  I've been there.  Sure it means I don't remember anything about whatever the horrible thing is that they did to me.  But I'm not allowed to go home on my own.  I tried to persuade the nurses one time that a random taxi driver was there to pick me up but they were having none of it and I had to put in an emergency call to a friend:  the joys of being single!  And then you're doollally for the rest of the day.  Not ideal when minding two kids with special needs and trying to work as well.  My GP reckoned I'd cope without sedation, so I thought I'd give it a go.  How hard could it be?  I wasn't too worried about the results, as it was a routine check of my tummy because I've been on this medication for five years.

At the hospital I was the second to arrive and the third to be called in to the ward.  But there were plenty of people behind me.  I just got more and more anxious, made worse by dehydration and hospital heat.  Then an hour after I arrived a nurse finally told me that I was first on the list.  I could have kissed her.  It just shows you that knowing what is going to happen is far more important to me than how bad the thing is.  Well within reason obviously.

Things got better after that.  It turned out that the nurse who was looking after me in the operating room used to look after Smiley in the children's hospital 16 years ago!  So she came back to the ward with me afterwards to look at photos, and made sure that I was well looked after.

Do you want to know what a gastroscopy is like?  Without sedation?  Well you get this spray on your throat that burns and tastes of old bananas.  Then a mouth guard is put in, you concentrate on your breathing and hold the nurse's hand.  They put the camera down your throat, you retch a bit, burp a bit, cry a bit - well I did - but within a few minutes it's all over.  I may have felt like I was choking, but I didn't feel like I was dying.  So not as bad a childbirth then, and over much more quickly.    The other benefit is that the consultant was able to tell me unofficially that all looked fine.

Then it was back to the ward for the spray to wear off, tea and toast and home, all before ten o'clock.

And the only after effect?  A blinding headache due to lack of coffee.....




Silent Sunday 10.3.13




Silent Sunday




Why I don't like International Women's Day

***Rant alert***

I always wanted to be a man.

As a girl I saw that men have more power, more money and more fun.

I saw women who were vulnerable, powerless, handicapped by hormones, periods, the menopause, endless housework, and most of all, fertility.

And I didn't change my mind when I grew up.  As a young woman, I tried to be a man.  I worked with them, ran with them, drank with them, drove fast cars, jumped out of aeroplanes, worked long hours. And it was (mostly) fun, and I was well paid.

Then I got married and had children. And everything changed.  I did discover the one advantage of being a woman: the miraculous ability to create and nurture life.  And I found out that this is a mixed blessing in so many ways.  Feminism and the womens' rights movements have a achieved a huge amount.  Today a woman can do almost anything she wants, so long as she doesn't have children, or other caring duties.  Even though everyone expects to get good quality care when they need it.

It is still through our fertility that society exerts power and control over women.  Even before birth, the pro choice people will blame you for having an abortion.  Right wingers will shame you for having a child if you not married.  Once your baby is born, your overwhelming urge to nurture and protect your child also becomes your weakness.  It enables men to control you, employers to sideline you, society to ignore you and the education, health and social welfare systems to beat you down with paperwork,  expectations, bureaucracy.  You become a second class citizen in the eyes of the world, even though you are doing the most important job of all: rearing the next generation.  Yet children are not valued, and nor is the job of looking after them.  Homemaking has very little status and is not much fun, for most of us.   Many mums put all their energy into their children, but get the blame if they they don't grow up perfect.

Why should women be expected to give up everything for their children?   Is it good for women?  Is it good for their children?  There are lots of pictures floating around Facebook about Mothers and the sacrifices that they should make for their children.  But I think that 'liking' these pictures means that society will just expect more sacrifices from mothers.  And where are the equivalent pictures for fathers?  I know that many of today's fathers are very involved in the lives of their children.  And that is something to celebrate, but it is not expected, it is not assumed.

Don't get me wrong: I love my children more than life itself.  I just don't love the way that society views me now that I am a mother.  And until that changes, International Women's Day is pretty meaningless.



How to cheer up a sad Mammy

I have been in need of cheering up recently, so when I got an email offering free cake, it was manna from, well, Baker Days.  How could a girl refuse?

Baker Days delivers a wide variety of personalised cakes both large and small, for every kind of occasions, including their novel letterbox cakes that - you guessed it - will fit through a letter box!  No more waiting in for couriers or traipsing up to the parcel office to collect.  

Still I was wondering how you could actually post a cake...

Then two days later I heard a loud thump on the mat.



It stayed in the tin until early afternoon, and then the need to do some work seemed like an ideal opportunity for a nibble.  Especially as I was sure that the cake would not last long once the kids got home.

And the all-important taste test?  Well it's very sweet and obviously not home-made.  But it put a big smile on my face, and on the faces of my two daughters.  And it was all gone before tea-time!

I do think it's a lovely idea, especially for when you want to send a special message or treat to someone, and a phone call is not enough.  I've sent wine, chocolates, and flowers, but never cake.  I think that's about to change!



When disability, cutbacks and bureaucracy collide


THIS is what happens.  And please don't look away.  Disability may not be relevant to you today, but that can change in a heartbeat.   Tomorrow you or someone you love could be facing the challenges that are faced daily by my special girl with bravery and usually with a smile on her face.  But not in this picture.

Smiley's shower chair that no longer supports her at all
She can hold herself up for a while but by the end of her shower
she's too tired.  She's 8 stone so it's hard to keep her upright.
This image is based on a photo taken at Christmas to show her service provider how serious
the situation is, and some supports have now been added to this chair.
But not enough to make her comfortable, or keep her upright.
This was not the post that I intended to publish today, but then her foot got caught yet again on the hoist, when I glanced away for a second, and we were both hurt in different ways.

Most of the equipment that I have to help her with daily living was prescribed at least 5 years ago, when she was much smaller than she is today.  Perhaps I should pay for it with all the cutbacks?  Yes, perhaps I should, but getting the right equipment is not as simple as it sounds.  You see I can't just pop down to my local disability shop - have you ever seen one? - because my daughter's needs are so specific that I need specialist help to find the right equipment.

It need to be comfortable and safe for her, and functional, and easy to use and clean for me.   Today there was another home visit by her new occupational therapist, and yet another supplier went away without an order.  The equipment he brought just wasn't going to work, for lots of reasons:

...The bathroom is too small
...Her legs are too short
...Her body is too bendy
...The equipment is very expensive

Smiley is special, even among teenagers with special needs.  She just doesn't fit standard special needs equipment.  Yet any time I imagine something that might work, it doesn't exist.  A shower trolley that folds up for ease of storage, like a sun lounger.  Nope, no-one makes them.  A fully supportive shower chair that reclines and tilts in space so that I can clean Smiley thoroughly.  Can't find anything like that either.  A suitable vest sling that I don't have to keep taking off and then wrestling with her to put it back on every time I need to move her?  Ah, now that might be possible....  Funny that even google can't provide images though.

But how long will it take to get?  How long will my special girl have to suffer the indignity of almost falling out of equipment that just doesn't work any more?  Or will she be just another victim of the cutbacks?