Friday, September 19, 2014

Looking after number one

It's been a week of blah.  I'd planned my regular reasons to be cheerful post, but all the things I hoped to feature did not happen.  I have to wait.

And some of the waiting is leading to stress and a few glasses of wine.  But mostly I'm using the time to look after myself.  Because for the first time in many years I finally have some spare time: I'm not doing any paid work now, and my two teenagers have - so far - been to school every single day since the new term started.

So I'm trying to retrain the way I think and not feel guilty about taking time out.

When I was working in a well paid job, I happily enjoyed some 'me' time every day, even though I had 3 young children.  But that changed once I became a lone parent, and even more so after I lost my job.  I felt that I had to justify my existence by doing Mum things 24/7, especially as the voices in the head reminded me of all the people over the years who had told me that I was cold, horrible, lazy, mean, useless and worthless, and other stuff like that.

Counselling helped, but until now, even my counsellor failed to persuade me to take a proper break.  I just couldn't do it!

You see I'd begun to believe all the things they said and the only way I could keep those demons at bay was by doing things for other people, especially my children.  If I did anything for myself I found a way to justify it in terms of the children:

...Going on Facebook meant that I was looking for new ideas to help them.
...Blogging was to keep me sane so that I could be a better Mum.
...Ditto seeing my friends.
...Exercise was to keep me healthy so that I can take care of Smiley for a very long time.

So to cut short a lot of self-reflection, I've finally accepted that I didn't deserve to be told those things, and that my worth does not solely depend on what I do for others.  Just being me is enough.  And doing things just for me is perfectly okay.

I think that counts as a good reason to be cheerful, don't you?

Reasons to be Cheerful

Tuesday, September 16, 2014

When you're offered meetings instead of services

Dear meeting organiser,

Thank you for your letter about the information meeting.

I hope that you will understand that I am not really interested in a pie in the sky document that no doubt took many well paid man and woman hours to produce when I can't get a therapist on the phone, I've had to cancel my daughter's one night a month respite again due to concerns about her care, and this year's school leavers from my daughter's school had not started in adult services last time I checked.

Also the meeting time clashes with my children's bedtime.

Yours sincerely

Smiley's Mam

This is the email that I nearly sent last night after receiving an invitation to a briefing meeting about the draft Interim Standards for New Directions, a document produced by the Irish Health Service about standards in adult services for people with disabilities.  I spent longer than I should wading through the 87 pages of jargon yesterday.  It's all very worthy and PC-friendly with lots of aspirations and plans for more meetings, and information sessions and documents to be signed, as well as plans and reviews and monitoring and evaluation.

It also looked like just another tick box exercise.

Has Smiley had her behaviour support plan?  Yep.  Tick.

Has she been encouraged to try out new experiences? Yep. Tick.

Has her personal plan been reviewed? Yep. Tick.

Is there anywhere suitable for her?  Nope. Tick.

Is there any funding available?  Nope. Tick.

Oh well, she'll have to stay at home then.   But everything is fine, because everyone has done their job, and all the little boxes have been ticked.

Actually no, everything is not fine in this scenario.  My daughter deserves better than that.

If Smiley's service provider wants to earn my respect, they need to stop organising meetings and start improving services.

And the reason I didn't send the email?  Because I'm afraid that all they'll do with it is tick the box that says "not attending"....

Note: I realise that my children are luckier than many in that they do have services.  But I still have the right to complain - if I don't we could all up with nothing.

Monday, September 15, 2014

Giving to get

We'll give you a pound for every mile you run, they said.  With a slight snigger.  After all I was far better known for partying than athletics.  So it was with great satisfaction that I collected £13 from each of them.  And handed a large cheque to a long forgotten charity.

Now there are requests for money every single day it seems.  Some more successful than others.  And the massive success of the Ice Bucket Challenge got me thinking about what makes me want to give to charity.

And what makes me vow never to donate:

...Begging letters.
...Pushy (charity) sales people on the doorstep, especially at dinner time.
...Charities that seem to use donations to top up the pay and pensions of the management team, and build shiny new headquarters for their offices.

My blood pressure is rising just thinking about it.

Other things make me reach for my purse faster than you can say famine in Africa.

Make it easy for me, make it fun, make me feel good, and don't put me under pressure.  Perhaps I'm selfish, but it's even nicer if I get something out of it too.

I didn't pour icy water over my head, but I did give money to the Irish Motor Neurone Disease Association - text donations make it sooo easy.  I also regularly sponsor friends on Facebook, but I prefer to do it anonymously.  I'd hate to be thanked publicly and feel that I might be putting other people under pressure to give money too.

Charity events can be fun: I used to enjoy pub quizzes, though it's a bit mad paying a babysitter in order to go!  The Dublin Women's Mini Marathon is also a favourite, but I haven't had enough free time to train for it in recent years.

But giving to charity and getting something beautiful and useful in return is the best feeling of all.  Dublin autism charity Snowflakes has the right idea with its range of snuggly hoodies.  I am now the proud owner of one, bought as a way of saying thank you for all the teen events that my son enjoyed attending.

And I thought I'd got enough charity clothes, until I spotted this T-shirt.

It is for a charity I'd never heard of before: Genetic Disorders UK, and it is part of their fundraising Jeans for Genes day on Friday 19th September - that's this week people - which raises funds to provide vital care and support to children with genetic disorders and their families.  It turns out that the work of this charity could be relevant to Smiley as one day a genetic disorder could be identified as the cause of her problems.  But besides that, I love the T-shirt.  If you do too, you can buy one here.

I still think that charities are not the most efficient way to deliver services to those who need them, but in the meantime I'm happy to give to them when I get something in return.  Even if it's just the satisfaction of proving that you can run 13 miles.

What makes you give to charity?

Thursday, September 11, 2014

Looking for reasons to be cheerful

I used to yearn for a quieter and more settled life, but an older wiser woman told me that it would never happen.  And I'm beginning to think that she was right.  As soon as something gets better, something else goes wrong.  Here I have two new battles to fight: for Smiley's future and my own health.  My mystery lung problem is still not resolved, but I'm off to the consultant tomorrow.   I'm not anxious about that at all, oh no!  And I'm hearing nasty rumours about services for adults with disabilities, which I will have to secure for Smiley as she finishes at her wonderful school next summer.  Expect more blogging on this topic soon.

But today is all about the good stuff...

Back to school

This has been the best start ever to the school year.  Everything I did (and didn't do) over the summer seems to have paid off.  The mornings are mostly going to plan, no school days have been missed, and homework is being tackled methodically.  Of course he's still complaining about it, but what teenager doesn't?

And a break from school troubles is what gives me reasons to be cheerful numbers 2 and 3..

Exercise and photography

Not much exercise was got over the summer, apart from the occasional bit of wheelchair pushing.  It suited me not to be aware of my lung problems either.  But with an appointment looming, I've been doing my best to make my symptoms as bad as possible so the consultant will take me seriously.  That meant lots of strenuous exercise and clearing and cleaning all the dusty stuff in the house and garden.

The exercise has been made a lot easier by my new phone, which has a working FM radio, and a pretty good camera too for when I spot something interesting.  I believe that it's a rule that you can stop running to take a photo, if it means you end up running further..

The list is getting shorter.

During the summer I felt completely overwhelmed by everything that needed to be done, from essential house maintenance, to clearing my wrecked garden, to tackling my two in-trays, to entertaining two teenagers with very different interests.   But unless I'd left them in front of screens all day, it would've been impossible to tackle the "to do" list.  With them both gone for several hours each day I'm now ticking things off the list faster than I'm adding them.  And that is comforting.

Exhibit 1: Let there be light

Yep, we had no kitchen light over the summer, but then it wasn't dark until after bedtime and the under counter lights gave great atmosphere.  But with winter coming in, changing the light bulb became a priority.  One that needed quiet and no interruptions.  You see it's not just a simple process of twist and pull.  Sadly for a DIY-challenged Mum, the shade comes away in two parts, one of which would shatter if dropped, which could easily happen as you carefully remove the screws that hold the whole thing up.   And then there's the need to buy another H-shaped light bulb.  You wouldn't find one of them in Tesco!  But it's done now.

No idea why my ceiling looks brown in this photo

Exhibit 2: I can see the grass at last

Do you remember when my garden fell down?  With the help of a friend, the massive clearance job got off to an impressive start, but then the summer holidays happened and the garden was left attractively featuring two enormous dead shrubs and a dozen bin liners of dying leaves and twigs.

Now it looks like this.  Not great I know.  But it was a lot worse this time last week.  And at least I can see the grass that needs to be cut now.

Perhaps next year I'll be able to sit on that bench and enjoy the view.  Now there's a cheerful thought.

Reasons to be Cheerful

Monday, September 8, 2014

Going unplugged

Have you ever unplugged everything?  Or just felt like it?  Obviously not the fridge or the washing machine, I'm talking about the telly and the consoles and the broadband.

I would love to do that, I really would.

Perhaps you dream of hazy summer days playing cricket in the garden and chilly winter nights gathered around the Monopoly board by the fire.  And d'you know what?  That was my childhood.

But it's not my children's childhood.

As in so many other households, my kids are glued to their screens, and it takes a lot of temptation or persuasion to drag them away.

When they were younger, it was the TV, and I would have happily have got rid of it, just as my parents did.  Even though I know the consequences of being different to other children, because that is the downside.   But I was outnumbered.

Then it was the Nintendo DS, then the Playstation, the laptop, and more and more and more.

It's a universal worry, but at least most children have some other outlets: they play sport, or go to dance clubs, or scouts, or just simply hang out with their friends.  Children on the autism spectrum develop obsessions, and these days their obsession are often video games. So one of the standard prescriptions from the "professionals" is to limit their access to games and the internet.  Easier said than done, of course.

But I do know of many families who claim to do that.  Who work through the consequences and come out the other side.  They all say that family life is much better as a result: calmer children, more interaction, more healthy activities.  It sounds wonderful doesn't it?

However every family is different and so is every child, and here the big switch off has been christened the "nuclear option", and not by me.

The biggest danger of using the nuclear option is that you're turning your wish for your child to spend less time on the internet into the ultimate battle of wills.  That you as a parent have to win.  And that is a dangerous situation.  Because some children on the spectrum will not let anyone win.  No matter what you do, they will find a way to beat you.  They can hold out longer than you can, because they know your weak points.  They know you have to sleep, to care for the other children in the house, go to work, whatever.   And switching off the internet is also likely to be seen as the ultimate punishment, and how is the child to understand this if they believe that they have done nothing wrong?  What might this do to the parent/child relationship?

The if the autistic kid is bigger and stronger than their parents, you're in trouble before you even start.

And what if everyone is so worn down by meltdowns that they cannot face introducing new rules that they know will just cause more.

Then there's the other children in the family who may not be at all supportive of having their internet access taken away.

What will the child do instead? I did an entirely unscientific survey of my Facebook friends recently on this topic.  Almost all of them confirmed that their non sporty sons and daughter spent most of their teenage years holed up in their bedrooms on the internet.

So perhaps it's better to leave things be.  Isn't a peaceful house a much better place for everyone?

I expect you can guess that I've chosen not to go unplugged in this house.  Have you?

Thursday, September 4, 2014

She's emigrating

It was a phone call out of the blue.  A friend is leaving Ireland for work, a young woman I've known since she was very young.  I've read plenty of articles about sons and daughters leaving, but this time it's very close to home.  Next summer I could be saying goodbye to my eldest daughter, as she leaves College to shape her own future.  It's unsettling.  I've waved good-bye to Angel before as she left for adventures in Africa and Rhode Island.  But she always came back.

I have always told her that I don't want to hold her back, I never want her to feel that she has to stay at home to help me with her brother and sister.  She can never be replaced, but I can find other help, I've done it before and I can do it again.  I resolve not to be sad if it happens, I hope to celebrate her spreading her wings.  Give her lots of love and presents and a party to remember.  If she doesn't want that, I'll organise something else, but there would have to be something to mark her leaving.  I'd need that, and I'd hope that she would like it too.  I would hate her to board the boat with just me waving from the dockside.  I would want her to know that she is loved and will be missed by so many people.

And so it is with my friend.

I need to organise something quickly.   But what?  I hunted for the perfect gift on-line, only to find that the last thing you want when you're leaving the country is yet more stuff to pack or store.

Some of the ideas I found include:

Silly photos
...To remind you of the good times.

A memory book
...Everyone contributes photos and tokens and memories.  Lovely idea, but I'd say someone has already organised that.

Something personalised
...such as a signed T-shirt.

A hamper from home
...You know what I'm going to say: Tayto crisps, Barry's teabags, a bottle of Guinness, maybe even some frozen Superquinn sausages...

A webcam
...To improve those essential Skype calls home.

An Irish keyring
...And there's a shop for that and 1000 other Irish souvenirs.

Anything from Boots
...I missed Boots terribly when I first moved to Ireland, so I'd say that this one is spot on!

A painting of your home
...Sadly I can't paint

A book for the plane
...I like this idea, but I'd want to get it right!

What would you do?  Because if I can't decide, I could end up giving her a gift that will (hopefully) be gone before she goes.  Something like this...

Tuesday, September 2, 2014

Cheesecake and apple desserts, made with Cornflakes!

Do you have a press/cupboard full of half finished cereal packets slowly going stale?  Probably loosely open too, and of course it always happens when you buy the large "budget" sizes to save money.  Why does this happen?  Here, the kids get fed up with the same taste, or I've bought them something different as a treat, or they go off cereal altogether and eat toast for a few weeks.  Right now we have a slightly different problem, with left over Cornflakes every week.  Sometimes I can sneak them into the new packet, but not if there's a large amount, or they've already started to go soft.

Earlier this summer I began making No-Bake Chocolate, Peanut Butter, Corn Flake Bars with Smiley, but we got bored with eating them every week, so the hunt was on for other tasty recipes.  So here are two more - one naughty and one fairly healthy - and I'd say you could swap the Cornflakes for other left-over cereals too.  Both recipes are very loosely based on ideas I found on-line.

Vanilla Cornflake Cheesecake

Makes 4 small portions

This was absolutely delicious but I think that it could be further improved by making it with less crust or more filling.


For the filling:
1 egg
1/2 oz brown sugar (13 gms)
8 oz cream cheese (200 gms)
1 tsp vanilla essence

For the crust:
1 1/2 oz of Cornflakes (38 gms)
1 1/2 oz of rolled oats (38 gms)
1 tsp baking powder
3 oz brown sugar (75 gms)
2 oz melted butter (50 gms)


1. Put the oven on at 170 degrees centigrade.

2. Whisk the egg and whisk in the other ingredients (I used a food mixer).

3. Crush the Cornflakes.  I use a plastic food bag and a rolling pin.

4. In another bowl, mix the crushed Cornflakes with the oats, baking powder, brown sugar and melted butter.

5. Butter a pan - I used a small Pyrex casserole dish.

6. Press the crust ingredients over the bottom and sides of the dish.  Pour filling over the top.

7.  Bake in oven for about 20 minutes until just set.

Here's what mine looked like coming out of the oven, complete with testing point!

Apple Cornflake Dessert

Makes 4 small portions


4 eating apples
1 tbsp sugar
2 tbsp runny honey
1 oz butter (25 gms)
3 oz Cornflakes (75 gms)
small pot of Greek Yogurt


1. Stew apples with sugar and 1 tbsp water in a pan until soft (about 10 minutes or so).  Liquidise or mash if you have a child like mine who doesn't like lumps.

2. Melt butter and honey together and add crushed Cornflakes (soften first with boiling water if crunchy foods are a problem for your child).

3. Using my trust Pyrex dish I put the apple mixture in the bottom, spread over some Greek yogurt and topped with the Cornflake mixture.

4.  Enjoy hot or cold.

Disclosure: I have no connection with Cornflake manufacturers or Pyrex.