What do you wish for when time is running out?


He wants to see the water lilies in bloom.  That much I learned during the latest trip to Wales to see my Dad, who is not well.  Most days he painfully reaches down to pull on his shoes so that he can slip out the side door and round to the new pond - only finished this summer - in hope.  Other days he does not leave the house at all except to see the doctor.  Yet last summer he was climbing mountains.  Now he struggles to climb the stairs.  How fast things can change. 

The mornings are the worst.  He has to take the anti nausea pills first, or he can't keep his breakfast down.  So he has to eat before he can take his painkillers.  How miserable is that?  The chest of drawers by his bed once displayed ornaments and photos.  Now it has packets and packets of pills all neatly lined up in formation, like soldiers ready for battle.

We were here less than two months ago, but this visit is completely different.  Half made plans to take Angel shopping to celebrate her exam success were abandoned.  There were no lunches out.  The whole extended family did visit some local gardens, but he stayed for less than an hour, and even that was hard for him.

My role this weekend has evolved from daughter to carer.  None of the family now like leaving him home alone, and I was afraid to have the radio on, or even wash my hair in case he called while I was in the shower.

He is pale, but hopefully that is due to lack of sunshine and anaemia.  And maybe the sleepiness is caused by all the pills.  He struggles with the pain, but his brain is a sharp as ever - he's still doing bits of work - his eyes twinkle when he smiles, and there's no trace of a quiver in his voice.  At 81, he's not an old man.  But it breaks my heart to see the pain that even simple tasks can cause him.  Like putting on his shoes.  I want to make everything right, but I can't.  All I can do is chat and cook and clear and comfort and just be there.  Except I can't be there that much....but my brothers can ...

Radiotherapy is due to start next week, and I'm so hoping that it will give him some respite.

And I'm really really hoping that the water lilies bloom soon.

NB: I have his permission to publish this post.

Baking is as easy as three, two, one...

Baking is one of the few things that I can do when I'm stuck in the house with an angry aspie boy, as I'm always afraid that wielding a hot iron or a bottle of bleach could lead to someone needing a trip to A&E!  Also warm cookies often cool a hot temper :)

So today was another baking day.  Most of the baking recipes I use now are quick and simple: it stops the kids getting bored if they're 'helping', and if they're not I need to finish quickly before they want me again..

Today I made 321 cookies.  The clue to the quantities is in the name so I don't have to dig out the recipe every time! 

3 2 1 cookies

Ingredients

3oz plain or cream flour
2oz butter or cooking margarine
1oz sugar (usually caster)

You can add other ingredients as well such as chopped dark chocolate or nuts, or you can replace 1/2 oz of the flour with drinking chocolate powder.

Method

Put oven on at 180 degrees Centigrade or 350 degrees Fahrenheit.
Cream butter and sugar until light and fluffy.


Sieve in the flour, and add any extra ingredients and combine together - using your hands if necessary - until it forms a soft dough.


Put small balls of cookie dough on a greased baking sheet.  This quantity makes 8-9.
Flatten each with a fork.
Bake in the oven until light gold - about 20 minutes.
Cool on a wire rack.
Serve.

An unexpectedly amazing outing

I was a bit anxious about today's outing.  Aspie boy and a few friends and another Mum who suggested we all go to a science gallery, where there would be no computer games.  And he had seen very little of this friend since our Viking Non-Splash Adventure last year.  I expected to watch him flitting past the exhibits and announcing he wanted to go home after ten minutes. 

How wrong could I be?

The Science Gallery in Trinity College Dublin is small, and free, and it kept our party of seven entertained for nearly three wonderful hours.  Well four of the children anyway.  Us Mums were mostly holding our breath in anticipation of boredom and Smiley was little bit bemused at first.  But we found another attraction for her - about which more later.

I can't even tell you exactly what is was that kept them so enthralled.  It might had been this:



Or this:

Or perhaps this:


And then when they'd finished with the exhibits there was an 'interactive' shop with a 'try before you buy policy' and lots of wonderful science toys that I've never seen anywhere else.  Aspie boy spent an hour playing with this one:


And after the shop came the café ...  and the chocolate cake passed the Smiley test and I enjoyed the coffee too.

As if that wasn't enough we're off to visit the lovely Jazzygal and her Wiiboy tomorrow :)

Dearest children, please choose sleep

Dear Angel,

I'm so glad that you're having such a wonderful summer, you're only young once and you're certainly making the most of it.  I guess you've earned it after all the work you did for your final school exams.  You're also very responsible, texting me at regular intervals through the night to let me know where you are, and if you're coming home.  And I suppose that having a fried egg sandwich at 4am after a night out is actually a good thing.  You do understand that I need to make sure that you remembered to put the alarm on and turn the gas off, don't you?  I am hoping that you will start arriving home a little earlier soon.  Perhaps when College starts?

Yours gratefully,

Mum
----------
Darling Smiley,

I love it that you're such a happy child, but it would be great if you would not be quite so obviously happy in the middle of the night.  Your laughter is infectious.  It is also very loud.  I do realise that you need to let me know if you have an accident in your nappy, but it would help if you then went back to sleep afterwards. 

Love from your sleepy Mammy
---------------
To my number one son,

I know that children with Asperger's like routine, but is there any way that you could get up a little later than 7am?  And honestly I swear to you that it is quite safe to go downstairs on your own.  When I go down first in the mornings - as you insist - I don't chase a herd of scary monsters out of the back door.  Really I don't.

Love from your confused Mama
---------------- 
Dearest children,

You don't like it when I'm cranky, cross and clumsy. When I'm irritable and impatient and exhausted.

Well, surprise, surprise, neither do I.

So please please choose sleep.

Your loving but tired mammy xxx
 

Written some time last night and inspired by 3 Bedroom Bungalow's Dear So and So posts.  At least I think it was... 

How do you eat your Brownies?

Baking is about the only domestic activity that I tolerate.  I'd rather watch a spider crawl up a wall than hoover up the cobwebs.  But baking is different.  The kids can join in, it's therapeutic and who notices what a house looks like when it smells of chocolate and sweet treats are cooling on the counter?

And they're great as gifts.  Which is how I found myself driving out to the country to see a good friend with my two littlies in tow and a plateful of chocolate brownies.  It was great to get out of the house and out of the city for a few hours, and chat to someone in real life and to meet her children properly.  But it looks like my Brownies may have made a better impression on the children than I did: apparently they want more, and so here is the recipe:

Chocolate Brownies

The most important ingredient is the chocolate: Scotbloc or Cadbury's will not work as the sugar content is too high and the Brownies will burn.  Ideally use a good quality cooking chocolate - Lidl sells one with a 52% cocoa content - or a good dark chocolate, but not more than 72% cocoa content or the Brownies will taste bitter.

Ingredients

4oz (or 110gms) butter or a cooking margarine like Stork
4oz chocolate
2 eggs, whisked
8oz castor sugar
2oz chopped walnuts
4oz plain/cream flour
1/2 tsp baking powder

Method

...Grease a shallow oblong tin: I use a 7 x 11 inch non-stick lasagne tin.

...Put the oven on at 180 degrees C.or 350 degrees F.

...Using a medium sized saucepan melt the butter/margarine and chocolate over a very low heat, stirring regularly.  Or you can use the pan over hot water method to melt the chocolate, but I don't find it necessary.

...Take the pan or bowl off the heat and stir in the eggs, sugar and walnuts.

...Finally fold in the sieved floor and baking powder with a metal spoon and do not overmix.

...Pour into the tin and spread if necessary.

...Bake for 30 minutes.  They are ready if a knife is inserted and it comes out clean.

...Leave in the tin for 10 minutes.

...Cut up and cool on a wire rack.

...They keep fine in a biscuit tin for a number of days, but I've never discovered exactly how long...

And how to eat them?  They're delicious hot or cold, with ice-cream, cream, dusted with icing sugar, or just plain with a cup of tea.  How do you eat yours?
 

NB Not sure if I can eat these on the C-Plan diet, but perhaps they can count as cake?

The C-Plan Diet

I am losing weight this summer.  I am on a diet, and it's actually working.

So in the interests of tackling the world obesity problem, I'm sharing the secrets of my new diet with you. 

For nothing.  

It's called the C-Plan Diet, and it's very very simple. 

Basically you can eat and drink anything in moderation once it begins with the letter 'C'.

So for me this starts with the following:

  • Coffee
  • Cheese
  • Chocolate 
  • Cashews
  • Chardonnay

Throw in some cauliflower, carrot, cabbage and courgette and all the major food groups are covered, no?  Add some conchiglie, cream and chives, and you have a proper meal.  

It's working for me x

Unusual isn't the word: My SNSS post

You know what they say about buses?  Well today I'm linking to my third guest post in as many weeks, thanks to the awesome Varda who blogs at The Squashed Bologna where she writes with authority, intellect and passion about raising two boys - one with autism - and caring for elderly parents.  She is someone for whom I have a huge amount of respect.  

In March she introduced a series of weekly guest posts on her blog - Special Needs Sibling Saturdays - to explore how children cope when they have a special needs sibling, and how parents deal with the fallout.  There have been some really amazing posts, so I was honoured but a little worried when Varda asked me to contribute.  Would I be able to write something good enough?

Too late now...it's up, and you can read it here.   And I promise, my piece is not a misery-fest and the m-word is barely mentioned.  It's mostly a celebration of my lovely daughter, Angel, inspired by photos such as these:

And memories of aspie boy like this one:
So please go and check it out, and read some of Varda's other posts while you're there x

I want my son back

I don't know where he's gone.

That little boy who ran up to me arms outstretched, "huggies Mam." Demanding, smiling.  Now I get kicked.

I want my son back.

The child who was interested in every conversation, "tell me," he'd say, and he'd listen as you'd explain it.  Gaming is his main interest now and he just talks at me, sometimes.

The comedian who was expert in wordplay.  He found his voice at two and the words tumbled out as though a dam had burst.  Where have they gone?  Why the silence? 

I want my son back.

The three year old who walked everywhere - a little reluctantly!  Who pushed his sister around the supermarket when he could barely see over the top of the buggy and had all the old ladies swooning in the aisles.

Who posed for the camera and flashed his baby blue eyes and wide smile at the lens.  No more good photos now.  He hides.

I want my son back.

Aspergers has taken him.

Note: This just poured out of my head tonight.  I love my son but I'm finding it hard right now to be his parent.