Looking for Blue Sky

TAT

2012-02-02T23:15:00.000Z

Since words aren't working I'm gonna give you pictures...And then I may take a bloggy break. (But every time I say that I only last a few days, so we'll see)

Many, MANY months ago, Heather at Note from Lapland started a meme that tagged bloggers around the world to find and photograph tat in their local markets. I sulked until she added me to the list. I had great plans, it would be a photographic project to keep me busy over the winter months. And what happened? I visited ONE market. But I did take some photos of other stuff that I found entertaining and liked. So here for your amusement are...

This way!

Lovely Irish souvenirs

What do you do with this?

Did anyone actually buy this?

How the property tax could destroy communities

2012-02-02T10:11:00.000Z

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? The new €100 property tax will be affordable for most people, but no-one knows how high it will go, or how it will be calibrated in future to take account of property/site values and ability to pay. There is even a proposal that unpaid property tax could be collected from the estates of dead people or when a house is sold. Apparently elderly people living in their own homes could be an (in) 'efficient use of land'. This could be the final straw that destroys communities all over Ireland.

Imagine a little street in Dublin (with apologies to David McWilliams). A street of old redbrick houses, well-kept, in a nice area, where a property tax or site valuation tax would be quite high. Who lives there?

NB: any resemblance to real people is entirely accidental.

No 1 : Michael and Mairead and their four children. Mid 30s, they both had highly paid professional jobs and bought their family home in 2004. Mairead stopped working after the birth of child four as the childcare cost too much and now Michael's salary has been cut. In serious negative equity, they are barely able to manage the mortgage. Will the full property tax push them over the edge? Will their home be repossessed?

No 2 : James and Mary and one of their five grown up children. They are retired civil servants in their early 60s whose pensions are not nearly as big as their neighbours imagine. James enjoys golf and Mary is a pillar of the local community. She chairs the local resident's association, helps out with Meals on Wheels and regularly checks on her elderly neighbours. They are very worried about how they will pay all the new charges, but know that they will get no sympathy.

No 3: Ivy is in her 80s and her health is now failing. She lives on her own and survives on a widow's pension. The house needs work, which she cannot afford, but she fiercely values her independence. Mary delivers her meals every day and Ivy knows she can ring her at any time. Ivy is very worried about the property tax. Will she be able to pay it? Can the Government take her house if she doesn't - as happens in the US? Or will her children lose out?

No 4: Margaret is separated with two teenage children, who are great friends with some of the kids in No 1. Her maintenance is just about enough for now and she minds the baby from next door, but she is not entitled to any means tested payments or waivers from all the new taxes and charges. The property tax could mean she has to move out of the family home. If she stayed and the tax becomes payable on her death, it could eat up the entire value of the house and more. She doesn't know what to do.

No 5: Sinead and Dermot are in their late twenties, both working. They bought in 2009 and can easily afford the mortgage as Sinead is self-employed so the bank would not take her income into account. Their 6 month old baby is minded by Margaret.

No 6: Brian is in his late 60s and is in excellent health, but he only has a small pension. Mary often brings him a meal and cleans up. He is afraid that he won't be able to pay the property tax and that his children will try and make him sell up so they don't lose their inheritance. Who will help him if he has to move?

I know that property taxes are paid elsewhere, but this is a NEW tax and it could become a very substantial cost that people cannot avoid paying from incomes that are already squeezed. So what can be done? There is a non-pay campaign underway, but with a proposed fine of €2,500, many will pay the €100 because they cannot afford to risk a fine of that size. Then there's the 'penny protest'. Well I'm calling it that and it's actually about cents rather than pennies, but basically it involves paying the €100 in cents, on the last day, in person. I rather like that plan, but if anyone has any better ideas, I'm willing to listen...

An unplanned trip north

2012-01-31T13:52:00.000Z

I am cautious by nature so during the great northern dash when traffic jams snaked around the Mourne Mountains and across the border, I couldn't understand why so many people were drawn to the shopping centres of Newry and Bangor.

Now I'm doing it. Going north I mean.

I blame Wales. A lot of time was spent in supermarkets oohing and aahing over the prices and the products that you can't get in Dublin. Now we're missing them, and since there will be no more visits to Wales for a while, a quick trip across the border seemed like a good idea, especially as I now have a van that does 50 mpg...

And yesterday was the ideal day. Angel wanted to come with me and it was the perfect way to thank her for babysitting on Saturday, while aspie boy would be home an hour later than usual. Of course the day arrived sooner than I expected and I quickly googled Tesco and anything else I could think of but google wouldn't give me the results I wanted - the new algorithm perhaps? Eventually I found a Tesco store in Banbridge, about 10 miles from the border, printed off the map and away we went. First stop was the service station, and a spot of refueling:

One and a half uneventful hours later and we arrived. The massive car park promised much, but the store wasn't actually that large. There was nothing to keep us there, so we got the shopping and left. But what to do with the rest of our free time? I drove into the town centre, even though it didn't look very promising, and we pottered around the quiet streets for an hour or so. It was like stepping back in time...

But it was good to spend time together and chat without the constant interruptions and demands from the smaller children. Even the sun peeked out from behind the clouds for a few minutes.

By 12.30 it was time to leave. Just in case. Perhaps Northern shoppers would be heading South? There might be jams. So we headed out of Banbridge. And on the last roundabout we came across this sign:

The Outlet.

Ooops, looks like my research did not go so well. Thank Google. Not.

So please tell me: is the Outlet worth going to? And where else would you recommend north of the border, for food, shopping or simply visiting? Because we might be going back...

Time to be happy

2012-01-27T15:25:00.000Z

After yesterday's misery wallow doom fest post, I absolutely had to come up with some reasons to be cheerful again. They may be hiding, but they're always there. It's time to be happy.

Angel on video

Finally, FINALLY, someone has videoed my daughter doing a series of backflips in training. As essential skill for a gymnast, but not her favourite thing. At all. She won't be able to use the 'can't' word again anyway! Sadly I am forbidden from posting it up here...

Saturday night

Complications around special needs (ie no respite) meant I had to cancel my day-time plans, but I'm should get out in the evening thanks to Angel and her friends who are going to hold the fort for a few hours. Dublin watch out!

Aspie activities

Finally my son is listening. After months of doing very little he has signed up to a number of activities this term which I'm hoping will reduce his anxiety: chess, art, tennis, science and Japanese...yes really!

Running is the cure for everything

When I finally weighed myself two weeks ago and got my cholesterol results (6.7), I knew I had to take action. But I don't do diets, they just make me feel miserable and deprived. Well apart from one. Hunger also has a bad effect on me - just ask my children. I get snappy, upset, clumsy and then I start to feel faint and cannot focus on anything except food until I get some. This was not good when it happened during lunch time business meetings.

Statins and supplements are giving me side effects, so what to do? Well I only know of one alternative: exercise. And I don't mean my old Jane Fonda videos.

I decided that I'd better start running again and seriously. Running has helped me before, but in the past the received wisdom was that you had to have rest days, and you started by running just 2-3 times a week. But I heard recently that the way to improve quickly is to run every single day. Perhaps that might be the way to lose weight too? So last Monday, as soon as the kids left for school I headed gingerly out the front door, checked that none of my neighbours were around, and wobbled down the road. Eleven days later and look! I've lost 6lbs. A little bit of healthy eating was involved too: the boxes of chocolates are empty now after all. But I think it's mainly the running, even though I've only managed to run on school days so far. A leaner, healthier me must be just around the corner!

Submitted, as usual, to Mummy from the Heart for #R2BC

I'm almost free

2012-01-26T13:39:00.000Z

Or why things are not nearly as bad as you expect them to be....

The deed is done. The court has stamped the second agreement. And once the solicitors have finished their work, my finances will finally be disentangled from my ex. Woohoo? Well not quite.

Until today I was feeling very down. I didn't feel like celebrating. I didn't feel grateful. And I know I should as so many families have lost their homes, and hopefully that will not now happen to me or my children. And I feel guilty about feeling down.

You see as part of the agreement I've had to give up my dream of moving to a little house by the sea, which we bought - thanks to my job - with a mortgage in 2003. It doesn't work for my two younger children any more. But it did once.

Sometimes special needs sucks.

When I started writing this earlier, that was the end of the post. But now the deed is done, I feel a lot better and a lot lighter. I'm on my way out of separation limbo at last. A chapter of my life has ended, but a new one is now going to begin, and at least I have lots of happy memories.

6000 reasons to be cheerful

2012-01-20T08:56:00.000Z

Like a dementor, January seems to suck all the happiness out of life in the post Christmas gloom. It's certainly having a bad effect on me: making it even more important to look for reasons to be cheerful.

Of taps and human kindness

The good stuff began last Saturday morning when the long overdue plumber finally arrived to replace a faulty dripping tap. I guess I fully expected that he would look at the plumbing, shake his head, tell me that a lot of work was needed and double the price that I'd been quoted.

It didn't go like that at all, he just got on with it. He also saw Smiley in her wheelchair. And when I returned from toileting her, he said - and I may be paraphrasing slightly here -

"All done, and I've put the door back on the hinges as well."

Remember this is a plumber? I was really delighted: that cabinet door was just another annoyance on my ever-lengthening to do list. He'd also stuck down some trim, and even showed me how I could fix the door problem should it ever happen again. It just shows how you can find kindness in unexpected places.

Aspie boy leaves the house

Later that morning my ex arrived to take aspie boy out for the day. One of my son's New Year's resolutions is to try more things. So with an interest in all things science he agreed to go to the Young Scientists' Exhibition. Sadly he said it was a bit boring and refused to stay very long. But at least he went and didn't just spend yet another day hunched over his laptop.

Another Smiley

There's a little girl on Smiley's bus this year who could be her younger sister. She can talk and sing and she thinks that every day is her birthday and every woman is a mummy. "Hello mummy!" she calls when she sees me and then she launches into the happy birthday song...every morning. It always cheers me up.

6000 reasons to be cheerful

I got a letter home from my son's school last week. It was asking every parent to bring their child on a march to oppose cuts to teachers in disadvantaged schools. I felt I had to go, so I took Smiley out of school early, wrapped her up Eskimo-style and made sure she was well-fed and toileted and headed down to aspie boy's school for 2.30pm, expecting to be one of a handful of parents taking part - most marches are not well-supported, you see. How wrong I was! A huge crowd left the school with banners and cameras and kids in buggies and as we marched down Summerhill, more schools joined in and families just left their homes and tagged on as well.

Our final destination was the Department of Education and up to 6000 men, women, children and babies in buggies crammed together and waved their banners, sang songs and listened to speeches. It was like a day in the park. My son was happy with his school friends and even got chatted up by a very friendly girl of perhaps 11 in a leopardskin coat - he had no idea what was happening or what to say! It was fantastic to see such a turnout, to see that people have not given up, and will continue to fight, especially when it's the future of their children that is at stake.

I'm entering this once again into Mummy from the Heart's wonderful reasons to be cheerful linky.

I'm going out for coffee...

2012-01-18T10:48:00.025Z

Coffee does get mentioned a *few* times on this blog, so when my blogging friend Heather asked for a guest post over at hers, it seemed like a good time to give it a bit more attention, and not to be writing yet again about special needs or my Dad!

I've read almost every post that Heather has written, because she's so funny, warm, honest and open about her life with husband Matt and their beautiful baby girl, living on the Welsh Borders. I always feel as though I'm on her doorstep being welcomed in for a friendly chat, perhaps with coffee and cakes.

So just click here , take a break and head on over...

Things I don't understand

2012-01-15T13:11:00.000Z

There's always been a lot of things about everyday life that puzzle me and now I finally have somewhere to write about them, and maybe get some answers?

There are two unsolved mysteries that I've blogged about before and am still none the wiser, so if you can help I'd be very grateful, especially about the clothes thing. And now here are a few other things that make my brow furrow, the worry lines start sprouting, and my mouth do that funny little panicky pouty thing...

...Why is modern stuff such rubbish? I've had three microwaves in the last year, my fridge is still a disaster, my last (nearly new) car was in and out of the garage for the three years that I owned it, and most of the clothes I buy look dreadful after a few months. Yet I still use the Kenwood mini electric whisk that belonged to my lovely Gran who has been dead for almost 30 years. My 1978 Caseo Calculator works perfectly, and the batteries last for years. Clothes from the 1980s that I saved are now worn by Angel and look fresh and stylish. Perhaps I just becoming a grumpy old woman (see below).

...And on the subject of batteries, are things now designed to use batteries even when they're switched off? Like my emergency torch. Thankfully I've never needed it. Just as well, as when I checked it recently the batteries had gone flat. We've all got torch apps on our mobiles now instead.

...Why is it so difficult to write the opening date on all the jars and bottles I have in the fridge so you don't be throwing them out because you can't remember when they were opened and you're afraid of poisoning the children? Or you sniff them, hope that you're not developing a cold and losing your sense of smell, then you try some and wait 2 hours to see if you develop a tummy upset and only then risk feeding the contents to anyone else. I thought the solution was to stick on a label. But this usually peels off and you find a little pile of them all cuddled up together on the bottom shelf....

....Why can you only tumble dry clothes from Tesco and M&S ? Shops where no teenager will ever venture? I do actually quite enjoy hanging clothes on the line. But I live in Ireland. So clothes put on the line do not dry for days - if at all - in the colder months of the year.

...Why don't (more) banks have cash points inside? There are so many unpleasant things that can happen at an outdoor ATM: a soaking, frostbite, mugging, scamming, blocked pavements, begging...That sounds very middle class doesn't it? Well you do feel quite vulnerable when you are trying to keep charge of a bored aspie boy and a teen in a wheelchair.

...How I got to this weight

...Why is turning 50 so scary? It's happening to me this summer. Already I have a big night out planned with three fab friends, but I need something more to take my mind off this landmark. Luckily my friend Jazzygal has a plan. The #50club. Hopefully we'll be celebrating all year together with Midlifesinglemum and anyone else who cares to join us. Slàinte!

The title of the post was borrowed shamelessly from my blogging friend auntiegwen - with her permission of course.

Don't stop the miracles - oppose cuts to teachers in disadvantaged schools

2012-01-13T09:18:00.000Z

I got a letter home from my son's school today - and a text asking me to read the letter.

It was important you see.

The school has been told that it will lose two more teachers under cutbacks in the Budget. This is on top of two teachers lost last year. And there are only a small number in total.

My son attends a 'disadvantaged' school (a DEIS school). Not because we are disadvantaged. We're not. But because the school has an excellent asperger outreach unit and these all seem to be attached to disadvantaged schools. Funny that. The school also takes lots of other children with a variety of special needs and many with none. It also works miracles. Yes we have hit a few speed bumps in the last 18 months, but aspie boy is now attending mainstream classes regularly, on his own.

Just two years ago he was out of control and causing constant disruption in his previous school, even with the support of an SNA. And I was really worried about where he would end up. As a school drop out? Or worse if his anger issues could not be addressed? Now I am looking for a suitable mainstream secondary school for him and I have a good story to tell when I ring them.

How has this been achieved?

With a lot of intensive work by a highly trained team in very small classes: the asperger classes have 6 pupils, a teacher and 2 SNAs.

All this work that is helping my son and others will be put at risk by these proposed cuts. These are children with huge potential. They just need a bit of extra help to get there. It is in the DEIS schools that this extra help is provided. And so they have a higher pupil- teacher ratio. And perhaps the Government thought they were another soft target, perhaps the Government thought the parents did not vote and would not protest. Well they were wrong.

We love our children and we want the miracles to continue.

We won't let these cuts happen.

Losing the Plot

2012-01-10T10:13:00.001Z

I was almost 39 weeks pregnant on number three, further than I had ever got before. On a sunny mild April day, I was visiting a friend in the country with my two girls in tow.

It was also the last peaceful day I was to enjoy for a long long time. The following night I woke at midnight after an hour of sleep with that now familiar feeling. Yep my waters had gone again. And I was happy. Finally I was going to meet the baby I had desperately wanted for the past four years.

The pregnancy had been closely monitored, but all had gone well. I'd given birth twice before, so I was pretty sure that I knew how to handle it. I even had a very simple birth plan : lots of walking around and pethidine.

Third baby = short labour. Right? I might even get back to sleep afterwards...

My MIL arrived, breathless, busy and excited and I left with my then husband for the short drive to the maternity hospital. The pains were steady and regular and easy enough to cope with. I was full of optimism, but as usual I hadn't read the small print. I met with the midwife and explained that the pains were in my back, which I hadn't experienced before. She told me that the baby could take a while to arrive, and suggested I take a nap on the maternity ward. Well I was wide awake and itching to get things moving so I said I would just walk up and down.

So I did just that.

I paced the quiet, dimly lit corridors. Up and down, up and down. It was just me and OH and the occasional check from the midwife.

By around 5am the pain was severe and I was shown to one of the labour rooms. Having previously given birth in a cubicle with curtains, I felt completely spoilt having a whole room with an ensuite all to myself. But I didn't get much enjoyment out of it.

OH slept on the bed for a while as I paced, but it wasn't long before I needed the bed myself.

I needed pain relief. And quickly.

You see I'm not keen on pain. I don't see the point of putting up with it when there are so many pills and potions available that will get rid of it. But childbirth is different. Not only do most of the methods of pain relief come with fairly scary side effects, but these days at least you're not expected to do your day job at the same time, so I was hoping to muddle through on pethidine, which helped me to focus and stay calm during the very premature birth of baby number two.

The midwife was called and I asked for pethidine. She wasn't keen and suggested gas and air.

"But I don't like like gas and air," I told the midwife, "it makes me feel sick and dizzy."

I was assured that it was different now. It wouldn't be the same as the gas and air that I had (not) enjoyed on baby number one. And you know when you get to that point in labour when the pain stops you thinking clearly or being able to argue your case? I'd got to that point.

I grabbed the gas and air as I needed something urgently. And I started to feel sick and dizzy, but I had to have something so I just kept sucking in great lungfuls. The only thing that kept me going was the midwife telling me that she thought the baby would be born shortly.

But by 8am I was exhausted, woozy, and barely aware of my surroundings, only the waves of pain registered. Then the midwife shift changed. I'd started to trust the woman who had helped me through the night, and when two new faces appeared, I began to lose hope that I could get through this. I told them I wanted an epidural. "Not now," they said.

Forty-five minutes later and I was begging for an epidural. It's too late now, they said. You need to push.   How could I push? I couldn't cope with the pain now, how could I deliberately make it worse, with no help? So at that point my mind gave up, I couldn't take any more.. Nothing seemed real anyway. I forgot abut the baby, I forgot about everything and everyone. I remember very little of the next hour, except a feeling that I was floating up in the air watching this woman labouring below on the bed.

Finally the midwives realised that I wasn't going to do this on my own. They called the anaesthetist, who eventually managed to get the epidural in. And then they called the consultant in case an assisted birth was needed. But shortly after the anaesthetist worked her magic, the fog cleared and I was back on the bed and I remembered that there was a baby to give birth to, and I started tentatively to push.

And when the consultant arrived I started to feel more confident - hadn't I seen him almost every week for the past 4 months? He knew me, he would know what to do.   "I think this baby will be born without any extra help," he said.

And then I knew I could do it.

Everyone sighed with relief as my baby boy slid out.

"He's perfect," said the consultant.

And I lifted up my tired woozy head to see what this had all been for.   The next day the anaesthetist popped into the ward to see me. I nearly kissed her.  

"You lost the plot, didn't you?" she said.

Got it in one, I guess.

Happy Holidays

2012-01-07T10:59:00.000Z

The holidays have been happy, for the kids anyway. We did very little in the end, but I have a few ground rules. I have to make sure that there is some routine and that Angel is the only one still in a onesie at dinner-time.

6am - no-one is allowed to get out of bed any earlier than this. I'm looking at you aspie boy.

10am - all of us (except Angel) are supposed to be dressed and breakfasted by this time (looks at watch, it's 10.15 and we're not oops).

10-1pm - I run around the house frantically trying to do anything urgent - washing, dishes, phone calls - you know the rote.

1pm - lunch. Like other meals this takes about 1 1/2 hours once Smiley has been fed (she mostly can't do it herself right now) and then toileted.

3.30pm - this is the time we usually escape from the house. I insist on a teeny bit of fresh air and exercise every day, even if it is just a walk to the post box or the local shop. And we did manage a few proper outings - the Phoenix Park, the National Botanic Gardens and Dublin Zoo - as well as visiting friends.

6pm - dinner time when I tear out handfuls of hair metaphorically while trying to whip up 4 different tasty and nutritious meals for 4 fussy eaters. Then it's more toileting, physiotherapy and the bed time routine.

8pm - I start putting Smiley to bed. Physically it's demanding, but there's no upset - like any other teen, she loves her bed! Though she still often calls me in the night. Which is not so good.

8.30pm - bed time for aspie boy. Lots of reminders about what he needs to do, followed by another few pages of the latest Harry Potter book, read by me. Then I have to sit on the end of the bed while he goes to sleep. This I find very stressful as I hate waiting! The iPad is my saviour as it is completely silent.

9.30-10.30pm - I slip out avoiding the creaky floor boards and head straight for the fridge or the kettle, depending on the day of the week you understand...

School starts back on Monday, and anxiety levels are rising. Aspie boy has a new teacher, so there will be a new routine and some interesting times ahead. I just hope he will remember how happy he has been during the holidays.

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world. Some aspects of this may have appeared in previous blog posts, so I apologise if you are a long time reader.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday

Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday

Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

Calling all special needs bloggers

2012-01-05T20:10:00.001Z

Actually this is for anyone that blogs, but I'm especially interested in special needs bloggers. A new showcase is going live next week, called Love All Blogs, created by the amazingly energetic @MammasaurusBlog who has 8 kids and a very entertaining blog. So I have high hopes for her new venture.

To join in you just submit an excerpt of your post in the appropriate category with a link back to your own blog, and then everyone who has subscribed - and a lot of people already have - gets a summary each week. The deadline for this week is midnight tomorrow. This showcase could be great for raising awareness of special needs and gives all bloggers a chance to bring their writing to a wider audience.

Why am I telling you all this? Well Mammasaurus has farmed out each of the categories to ~~foolish~~ willing volunteers to promote and introduce each week. And late one night earlier this week I volunteered to look after the Special Needs Section. Only because no-one else came forward, obviously. So I would love it if you would join in x

Groundhog day

2012-01-04T10:46:00.000Z

I love my kitchen. But I don't want to live in it. Yet this Christmas it has often felt as though I was doing exactly that.

One morning this week as I stood at the sink I could not remember what day of the week it was. I have the domestic form of motorway boredom, I'm on complete autopilot, lurching from dirty dishes to smelly nappies to discarded clothes, and so the days were passing in a blur like the view from a car window.

Once again I'm restless, staring at the patch of blue sky above the rooftops that seems so far away and watching the ivy on the wall taunting me as it dances in the fresh breeze.

The children don't seem to mind, even Smiley is mostly happy about staying in the house. It wasn't supposed to be like this. Other Christmases have included trips to Wales or Wexford. Not this year. Perhaps it's just the loss of my Dad that is still so much on my mind. No-one is sick and we have got out of the house every day, even if it was just a walk to the shops. My plans for my son hit a roadblock when the friend he wanted to see was not available, and he refused to arrange anyone else over the next few days in case a new arrangement could be made. So we did nothing for four days.

Perhaps this is a case of welcome to the real world? Perhaps the new challenges in my life will be how to live a normal life, an uneventful life, where the mundane and the routine dominate as the days pass. Somehow that doesn't sound like me. I need a project, something new and exciting. I may even write about it here. So watch this space!

I wrote this two days ago. Yesterday we spent the day at Dublin Zoo with friends and already the holidays seem much more enjoyable, though the house has paid the price - you've seen the photos before...

A Happy Christmas, a New Year and more blogging

2011-12-30T09:33:00.001Z

The Magic of Christmas was missing from the early hours when my son insisted that we get up. The memories of past family Christmases cast a long shadow as the sun slowly rose. My children were happy enough with their presents - two of them got exactly what they asked for and Smiley got clothes and DVDs. Then their Dad arrived early and stayed for the mad scramble to unwrap the presents under the tree. He took Angel and aspie boy off for a couple to hours to see his family and I headed out with Smiley to get some fresh air. Our destination? Dublin's Phoenix Park to take part in a mile 'race' for the Irish overseas aid charity Goal. It was mild, windy and fairly bright.

There were lots of other families there - including one other buggy - and Smiley got quite excited.

I pushed her round the grassy course - my workout for the day - and Smiley enjoyed watching all the runners overtaking us - and we both felt a lot better after our little outing.

Back home and Smiley relaxed with a DVD while I got my first ever Christmas Dinner started with the help of Angel, who prepared the stuffing and the Tiramisu. I also had to lay the table...having seen what other people do, I will have to put in a bit more effort next year.

Dinner was lovely and all the kids were on good form - but I am banned from sharing the photographs!

Now I am looking forward to the New Year. Not my birthday, as reaching 50 is worrying me more than I expected, but rather putting the sadness and challenges of 2011 behind me and getting on with my life. This is what my Dad would have wanted and it's certainly what my children need.

But 2011 was good in many ways, including here. It's my second full year of blogging and I think I'm now comfortable with it. I don't have to work at it. Sometime ideas just pop into my head and other times stuff that's bothering me becomes clearer once I write about it. I'm still wary about over-sharing and boring people, but I do plan to put more posts on Facebook after one of my best friends asked had I stopped blogging. I don't think that will happen any time soon, especially as two posts in particular got an amazing reaction. I was still in shock when I wrote about the first big meltdown, but somehow it struck a chord with readers, including many who'd never looked at my stuff before. So many people said nice things about it, including one journalist I admire who simply tweeted: 'Keep on writing. :)'

Then last month while reeling from the death of my Dad, the Irish Budget was announced and it included a provision to reduce the Disability Living Allowance for young people with disabilities, and some politicians were reported to be have said that they should all be able to work. I looked at my daughter and, still reeling from the death of my Dad, I wrote a post asking what job would be suitable for her. I tweeted it once, maybe twice, and someone picked it up and then someone else, and it snowballed and soon my @mentions looked like this:

I was overwhelmed by all the lovely comments and I hope that it helped to make a difference - I was one of a number of parents who spoke out, and this Budget provision is now being revisited. And today I wake up to find that my favourite post of the year has been included in an amazing roundup of some of the year's best blogs. So I will keep on blogging...

I'm submitting this to #R2BC, one of my favourite linkies as just taking part makes me feel more cheerful.

Smiley and the iPad : Our Favourite Apps

2011-12-26T10:31:00.000Z

Since the iPad arrived in our house by sleigh last Christmas, it's become a major part of our lives. I am completely hooked, Smiley less so. As usual, she was really excited at first with her new toy, but she is not in control of it and that has dimmed her enthusiasm. But I join her for a brief play session on it most days and - as I expected - it keeps us both entertained in waiting rooms and on ferries...

Currently Irish Autism Action is running a great fundraiser that also provides families with iPads in return for old mobile phones. And I've seen many requests for information on what Apps to get. So perhaps someone somewhere might find our list of favourites useful for a young child or an older one with a moderate or severe intellectual disability, especially if they have a motor impairment as well:

Line Art - the first one we got and still a favourite. Like a sensory room effect on the iPad that she can control with light movements of her hand.

Fireworks - similar to Line Art but with firework sounds :)

More of the same include Fluidity, Fluid, and Bubble Snap

Peekaboo Forest - I love this as the graphics are not so babyish.

Goldilocks - love the story and pictures and so does Smiley.

Fairies Fly - strictly for girly girls, but very popular here. The intro is watched over and over and Smiley takes an interest in the simple games, which we play hand-over-hand.

Timmy's Pre-school adventure - interactive story that Smiley can enjoy with a little help.

Colouring - a simple introduction.

Spot goes to school - a lift the flap book with activities.

Apps that have sounds and pictures (they're a bit babyish for my 15 year old):

Sound Touch

Vocal Zoo

Peekaboo HD

For the music lover, try Virtuoso which is an easy to use virtual keyboard.

I also plan - soon, I promise - to introduce Smiley to the idea of communicating through the iPad, using iComm, and hopefully Grace, which is one of many Apps reduced in price during the Christmas break.

I hope that someone finds something useful on this list, and if you know of anything that Smiley might like, please let me know xx

Buying Shoes

2011-12-24T09:26:00.000Z

Not Manolos. Not Jimmy Choos. Plain shoes. Everyday shoes. Shoes for a boy with aspergers. How hard can that be? Quite difficult as it turned out. I know to be careful about shoes. He does not want to part with his current pair, even though there is a hole in one of the soles and they are one size too small. Shoes have been purchased before, and then rejected as uncomfortable days or even hours later.

It's taken me several months to persuade him to go shopping for shoes. And he had to pick December 23rd! Luckily his big sister agreed to mind Smiley, which meant special time for him with Mum and access to all the children's shoe departments that don't have lifts...yes really!

But who knew there were so many ways in which shoes could feel uncomfortable. His toes hurt, or the heel moved, or the shoe 'compressed' his feet. Or they looked wrong, they weren't cool or he didn't like the colour. We trudged up and down the busy shopping streets of Dublin weaving in and out of the Christmas shoppers. Thanks to the recession there were no queues in the shoe shops, and the patience of the staff was inspiring. They'd watch him twisting this way and that, reason with his issues, bring different sizes and different styles. I photographed the boxes so I would remember which shoes were on the 'possibles' list.

Finally in the last shop I thought we'd found 'The Pair'. Ok so the shoes weren't completely black. They had red and silver flashes on them, but I figured I could get those past the school. They had laces, but hey, he's 10, it's time he learned how to tie laces. He was delighted with them.

"They're really comfy Mum."

The assistant showed him how to tie the laces. Several times.

"But I can't see where the second loop comes from!" he said. Over and over again.

That's when I realised. These shoes would not do either. Aspie boy is very anxious right now. He follows me everywhere, including outside the house when I go into the garden, whether it's to hang out the washing, put nappies in the bin, put the bins out, or leave Smiley out to the bus. He won't wear shoes in the house, so they have to go on each time. And that would be completely unmanageable with lace ups.

By this time it was 10 to 1 and I was feeling faint with hunger, never a good time for me to make a big decision. So we came home with no shoes.

But we did return home with a long sleeved T-shirt with Yoda on the front. This purchase increases his choice of winter outfits by 50 per cent, and is thus a good thing.

And as for the shoes? Well we'll just have to do it all again another day..

Last Christmas

2011-12-22T22:56:00.000Z

There was snow.

I was thinner.

I was younger.

I was less worried about the future.

I was with my family.

I did not know that my Dad was ill. And neither did he.

I didn't feel so empty and alone.

...and on the other hand...

I had not made so many wonderful new friends through blogging, twitter and Facebook.

I had not been to a ball.

Angel had not survived and celebrated her final school exams.

She had not enjoyed her post exam holiday and her Debs.

Aspie boy had not gone through months of meltdowns so bad that I almost didn't know who he was any more. But once we got some help, he became a different child, settled into his new class and became my rock following the death of my Dad last month.

We'd only had 14 years of smiles and giggles from my very special girl :)

...that was last Christmas. This year it's for the kids...

How to make the perfect Christmas Dinner

2011-12-18T15:07:00.000Z

This is not an instruction manual.

This is a plea for help.

You see, for 49 years I've managed to avoid being in charge of cooking Christmas dinner. I am very good at avoiding doing things I dislike. I don't dislike cooking, just the idea of Christmas being my sole responsibility on a day when I'd rather relax. So I've always happily eaten a dinner cooked, or part-cooked by someone else.

When I was growing up Christmas was magical and also predictable: Santa presents, brunch, a family dinner with the grandparents, then more presents, board games, Christmas cake, Dr Who and then bedtime. My other memory is that my Mum found the day incredibly stressful, so perhaps that is why I have avoided it. It improved for her once she replaced the traditional dinner with Coq au Vin and her wonderful trifle - trifle sponges soaked in sherry, topped with sliced peaches, real custard, whipped cream and toasted flaked almonds - Yum!

Once I got married we had the traditional split between the two families. Christmas in Wales changed little, but Angel and her cousin made sure that it was endlessly entertaining. And Christmas in Dublin was a whirlwind of Mass, visits to the extended family, dinner at Nanny and Grandad's and walking home through the crisp December air.

With the loss of my parents and the ending of my marriage, those options have gone. Finally, my time has come and I am not exactly looking forward to it, Perhaps I shouldn't bother? There will probably only be the four of us.

But my children are expecting a wonderful day. So what should I do? How do I reinvent Christmas for them? Two of them are going to see their Dad and his family in the morning, and I'm hoping to take Smiley out for a walk. How do I fill the rest of the day?

And making the perfect Christmas dinner will be the most difficult thing of all to resolve...

Smiley will want mashed potato, gravy and vegetables.

Aspie boy doesn't know what he wants but normally he won't eat turkey, ham, mashed potato, roast potato, gravy or cranberry sauce. He will eat the vegetables.

Angel loves her protein and carbs. If I cook a traditional Christmas dinner it will be largely for her, and she will pile her plate high with meat, potatoes and gravy. She doesn't really like vegetables but forces herself to eat a little every day ... she did listen in home economics....

I'm hoping to get some ideas from Listography and Ella's Carnival. But if you have any, please don't keep them to yourself...

Help twitter help premmie babies #Twitterxmassingle

2011-12-16T09:21:00.000Z

So far I've watched from the sidelines. I've done the odd retweet, but nothing more. But helping premature babies is a cause very close to my heart, so I just had to blog about the #Twitterxmassingle. If you live in Ireland and lurk on twitter you will know all about it, so please bear with me while I explain. It started with a tweet, and an idea was born. An idea that snowballed until one Sunday at the end of November, twitter users from all over Ireland gathered in Dublin to record a special charity version of 'Winter Song' in aid of the neonatal unit at the Holles Street Maternity Hospital in Dublin.

Smiley was also born in a Dublin maternity hospital. At just 26 weeks. She was very ill and completely helpless, unable to breathe unaided. Without the technology and the tremendous care and dedication she received for two months in a neonatal unit she would not be alive today. And that goes for thousands of other children too.

You don't have to be Irish to buy the #Twitterxmassingle. Or on twitter. It's a great cause and a lovely version of the song, and it has a very good chance of becoming the Irish number one single for Christmas :)

So please help and download it today from itunes: http://itunes.apple.com/ie/album/winter-song-single/id485227782

A Guest Post from Smiley - The Versatile Blogger

2011-12-12T22:26:00.000Z

My Mammy was given the Versatile Blogger Award quite a long time ago and didn't know what to write, so she gave it to me :)

I really hope that the two lovely bloggers, The Rambling Pages and Aspie in the Family don't mind.

Anyway, here are a few things about me:

....I have green eyes with a gold spot in one of them.

....I know where I am. Even when I was just two years old I would get excited on the school bus when I saw the red-brick houses on the road where I live.

....I know what I like and will stretch my arm as far as I can to reach something sparkly, even if someone else is holding or wearing it! I can see my Mum sighing now...all those hours of physiotherapy and I use my new skills to grab other people's pretty bags?

....I didn't get my first tooth until I was 22 months old. Perhaps that's why I don't like food with lumps. Yuk!

....I really enjoy music and dancing. One afternoon I will never forget was being invited to the 16th birthday party of one of my friends at the local dance academy. I could still use my old walker then and I had a wonderful time :D

....I used to LOVE going to the playground and my Mum has promised to build a playground for me if she wins the lottery. It will be for all children and teenagers, whether they have disabilities or not, and will include all my favourite things: a trampoline that I can be bounced on, swings that I can't fall from, and a safe slide, sea-saw and merry-go-round. And of course there will be lots of hoists so I can get on everything....

...Another activity I wish I could do more often is ice-skating. My Mum used to bring me to the open-air ice-rink in Smithfield, and the professional skaters would bring me round - the faster they went, the happier I was. Now I sometimes go with my school.

And I haven't mentioned swimming, horse-riding, or the most unusual activity I ever did: going up a climbing wall while on holiday with my family and the Rainbow Junior Arch Club. I wore a special harness that meant I could join in with all the other children :)

That's all. Will this do, Mum?

Reasons to be Cheerful #R2BC

2011-12-10T09:52:00.000Z

As well as the heartache over my Dad, the GP confirmed this week that I have vertigo. And it could last for up to 6 weeks. All my favourite activities - computer stuff, drinking coffee - are making me feel worse and have to be limited. So this weekend it's very important that I look for some reasons to be cheerful. And I've found some...

Respite

Smiley was in Respite on Thursday. And while I missed her and the house was huge and empty without her, it felt so good to switch off the alarm and get an uninterrupted night's sleep. It also meant that I could pop into town with aspie boy as I was freed from the usual routine of drinks and toileting, video, dinner, exercises/activity, and finally bed, that leaves little time for much else on schooldays.

A new game

Anxiety has been aspie boy's biggest issues for the last couple of months and that includes anxiety about choosing new games. He has been miserably unable to make any decisions and so has retreated more and more into the world of Youtube, just watching, not doing anything at all. He was so excited when a school friend gave him an unwanted Star Wars game, distraught when he realised that it was scratched and finally happy after getting the disc cleaned in town. It is a Wii game so he has to go into his 'den' to play it, and this is good, because he has refused to leave the kitchen (where I 'live') or my side for the past few months.

People power

There were lots of sneaky cuts in the 2012 Irish Budget, many of them targeted at women and children. The biggest cut of all was to the income of young people with disabilities, but after a huge public outcry, it was put on hold, and will hopefully never be introduced.

Christmas Shopping

It's done. Well most of it. And mostly on-line. But today I am heading into town with Smiley. The day will be part of her Christmas present and will involve trying on clothes, eating cake and getting very excited about all the lights. We're going to have a lovely time.

So Minister, what job would you suggest for my daughter?

2011-12-06T21:48:00.000Z

So who took a 46% cut in their income in yesterday's Budget? Was it the wealthy? Nope. Politicians perhaps? Nope. Or Bankers. Wrong again. It was young people with disabilities, who are no longer entitled to the full rate of disability living allowance (DLA) until they are 25. And they get nothing until they are 18, but their parents will be entitled to claim the much lower domiciliary care allowance for a further 2 years. This will affect Smiley, who will be 16 in 2012. I was expecting that she would be entitled to DLA from next October.

For many households this cut will come as a bitter blow, but all of us with children like Smiley feel insulted that Ministers understand so little about the problems of our children. Apparently at least one Minister believes that every young person with a disability is employable. The DLA is being reduced to the same level as job-seekers allowance, now set low as this will apparently encourage young people to to take up training and employment. Are there actually training courses for teenagers like my daughter, that will achieve what 13 years of intensive schooling has failed to do? Equip her with the skills to go out and get a job? My daughter who cannot talk, walk, is only partially toilet trained and whose main ability is making people happy?

And here is Smiley tonight playing with a new balloon...Minister, again I'm asking you what job you would suggest for my daughter?

Rebuilding

2011-12-04T19:12:00.000Z

I really need new curtains!

The fire is lighting and the baubles are gleaming on the tree as I write this just one week after my Dad's funeral. And in a few minutes the Harry Potter DVD that I bought earlier today will be unwrapped and we'll escape to Hogwarts, Angel and I. Christmas is coming and I have to rebuild for my kids.

The sadness still clutches me every day, but the awful stress and pain of knowing that he was going to die and feeling so helpless, that is gone.

He always believed in being positive, and so I am looking forward even as I miss him.

In many ways my children's lives have been on hold. This week I have started to catch up with all the things that haven't been done. Keeping busy is now my drug of choice.

Mail was dealt with, nappies ordered (by Thursday I had just two left...and they don't sell Smiley's size in Tesco) stuff was fixed, thanks to the brother-in-law of one of my lovely friends, windows cleaned, winter fuel bought, the fridge restocked, and I started running again. I took Smiley to the teen club on Monday and the Rainbow Junior Arch Club on Saturday and began her intensive physiotherapy programme again. There were two appointments for Smiley and three for aspie boy, including his IEP, which went very well: his class teacher is just as enthusiastic about his potential as I am, and we both agreed on everything including a strategy for secondary school. I started ringing all the local schools this week, but it appears that he will be near the bottom of the waiting list for those schools that are suitable. He has become a victim of the Millennium baby boom I fear.

This is just a short update as I am struggling with vertigo which means that reading and typing are difficult, and now the cold air is trying to seep in through the windows and walls of this old house. Winter is really here...

Do teachers provide free child care?

2011-12-01T10:10:00.000Z

Well no they don't. They educate our children, and I believe that they are undervalued and under appreciated. And I can understand why so many joined yesterday's strike in the UK. But I'm sure that I was not the only person who got annoyed every time the teachers stridently condemned any parent who dared to complain about the disruption to their child care plans. Can we get real here please?

First of all I am going to refer to working mothers, though I know the cost of child care should be shared and that mothers in the home also work - I am one now, I should know.

Anyway most working mothers are delighted when their kids start school because working did not pay for many of us when they are small - you stay in the workforce to keep your job or your sanity or both. You only start to make money once you wave good bye to the creche fees. But while organising childcare for school going children is much cheaper, it is also much more complicated, what with holidays, staff training days, mid term breaks, sick children, snow, and few of us can afford a childminder on standby to cover for all eventualities. But that is what employers expect. Employers expect us to be in work every day, whether the teachers are or not. Our children have to be invisible. Whenever I took time off to care for a sick child, my clients were told that I was sick. Oh and I wasn't paid.

Many teachers are also working parents, so we're actually in this together. All working parents need help with childcare, and personally I believe that every school should have a breakfast and homework club: this can be good for some children as well as for working parents and would make better use of school buildings. Perhaps private companies could operate childcare in the school when it is closed - this did happen at aspie boy's former school, which is the main reason he went there.

I happen to think that most teachers are amazing people with huge talent and dedication - look what they've done for Smiley and aspie boy. There is no way that I could ever stand up in front of 30 children hour after hour trying to teach, control and care for them, day in, day out. The education of our children is vital for them and for the country's future. Yet in the Irish media all we hear is about the short working hours and long holidays that teachers 'enjoy'.

There seems to be a campaign to pit the public sector against the private sector, to impose cuts on both, while the architects of the current recession remain almost unscathed. Stop rising to the bait! Parents and teachers should be on the same side. Can we please all respect each other.

My kitchen as you will never see it - a #Gallery post

2011-11-30T08:26:00.001Z

Many of you will know that I do not have a healthy relationship with housework. Too many years of not wearing my glasses meant that I just couldn't see mess or even dirt very clearly, and it passes me by without registering. Once I had children I realised that dirt could be dangerous, and I had to clean up my act...and my house. But I always believed that spending time with the kids was more important than cleaning, because that would get done eventually. So I chat or play with them and leave the dishes and the the recycling to pile up by the sink. Angel is baffled by the latter. "Nobody does that", she says looking bemused, but I'm sure I remember a wash and squash campaign? Anyway it's the only way that I can fit everything in the green bin and keep it smelling sweet...

Even now the main reason that my house looks reasonable to visitors is because of them. Word of a visit by the MIL always led to a mad dash round with the hoover and the wipes while the kids were plonked in front of a video. Now I have two kids with special needs there seem to be visitors almost every day, and it's probably just as well, otherwise my kitchen might look like this more often:

This was a particularly bad day involving four different dinners and a baking session. This morning it looks like this:

More kitchen posts over at Sticky FIngers.

A day in the life of a frequent ferry traveller - with a little help from sea-bands

2011-11-27T13:21:00.002Z

Note: this post was written nearly three weeks ago and held over..

Brrrrnnng! Brrrrnnngg! It's 4 am and the dream fades to grey....the ferry! Packing! The sea-bands! Mustn't forget the sea-bands of which more later. It probably sounds insane, but the middle of the night is the one time I can pack - really fast - with a list and no interruptions from the kids. This is our fourth trip across the Irish Sea in as many months to see my family, and I'm on autopilot. Between 6 and 6.30 the children get up. No time for breakfast, just a quick drink and then the car is packed, the house is checked and we're off. Traffic slow, we arrive at the port just 30 minutes before departure. Aspie boy doesn't want to get on the boat. There have been tears for days which culminate in a full meltdown on the car deck. This *may* have delayed the sailing as we were the last car on and it took ages to get Smiley and her buggy out of the back and repack the car.

Aspie boy is anxious, especially about the possibility of getting sea -sick. (He conveniently forgets that his Mammy is the one who suffers the most).

But I have a distraction. Instead of the usual pink pills, I have a packet of sea-bands to try. They're accupressure bracelets you wear to avoid travel sickness. Aspie boy is suspicious at first, suspecting a James Bond-style secret weapon that will shoot deadly poison into our wrists on the high seas. He puts them on anyway. Dutifully Angel does too, even though "I don't get sick now, Mum". Smiley also tolerates them and doesn't try to take them off or chew them, so that's a successful start...

It was an uneventful voyage and everyone was happy with the sea-bands. Aspie boy was especially happy...

"These are awesome, I like them! I don't even feel wonky when I'm walking!"

And I was able to drink two cups of badly needed coffee without a trace of nausea :)

The road trip through North Wales was made more interesting by the sighting of a couple standing by the side of the road with their thumbs in the air. I asked aspie boy what he thought they were doing. Hailing a taxi, he replied. So that started an interesting discussion about the decline of hitchhiking, and no sign of any car sickness either.

On arrival we first went to the hospice to spend time with Grandad who seemed a little better. Next shop : food shopping. What does it say about my kids that they get excited about the low prices in UK supermarkets ?

Of course we spent too much as there were so many 'bargains' - just look at these boots I got for £ 19 !

Four ready meals later, we were full and tired and glad to be back in Wales.

Disclosure: The Seabands were provided free for us to try out and review.

Postscript: As most of you will know, my Dad became very ill as we travelled back to Ireland and passed away the following week, so I did not publish this after writing. The sea bands were also used on the trip back and two more crossings since, all on the slow boat due to gales on the Irish Sea. Only aspie boy got sick, and only once, and that was yesterday during one of the roughest crossings I have ever experienced. And my thoughts today are with the family and loved ones of the crew of the merchant ship which sunk off Holyhead last night.

Moving On

2011-11-18T10:31:00.000Z

Most of you will know the stages of grief. I am feeling numb, and right now I'm in denial. I expect to wake up some time soon and discover that it was all a bad dream, even as I draft my Dad's obituary. The tears fall when I meet friends, or find unexpected things: a rubber band borrowed to tie up a cereal packet. He will never need it back now.

But I have to keep going. I have three children who keep me very busy, even Angel at 19 still needs her Mammy at times. And I need to blog.

If I don't write about my Dad, it's not that I am not thinking about him. It's just that I'm trying to think about something else. He was always positive about life and living, always looking forward, and I think he would want me to do the same.

So I'm moving on. Slowly.

And blogging will start again properly soon.

I am heartbroken

2011-11-16T08:13:00.000Z

My Dad. 1930 - 2011. RIP.

Time with Grandad

2011-11-09T15:15:00.000Z

Another trip to Wales and another stage in my Dad's illness. Each time we visit, there are changes.

I've put my feelings in a box marked deal with later. Right now it's the only way that I can do all the things that need to be done each day.

But there are positives. He's back in the hospice, and he loves it there. The wonderful staff and the care they provide mean that he now copes much better with his illness. Cancer may be cruel but it is no longer in control of him. Thanks to the hospice, he is now living his life again, day by day.

He is not the only person who is in a better place. There are big changes in aspie boy too. He is not feeling so angry and we are all happier as a result : including him. This latest trip could have been such a nightmare. I could not prepare his daily schedules as I never knew what was going to happen. Yet he helped me to remain calm. Complaints were few, even though hospices are not the most exciting of places for ten year old boys. Instead he made the most of the time with his Grandad....

NB: I have his permission to publish this.

What I want for Christmas is.... a #specialsaturday post

2011-11-05T12:23:00.000Z

I get very angsty about buying presents, for everyone, not just the kids. I love it when I get it right and find something that I know will surprise and delight, but that happens only rarely.

Buying presents of any kind for Smiley is now a huge problem. At 15, she is too old for most children's toys - and she knows it - but intellectually she is stuck at about the 2 year old level, and there are no companies that cater for that unusual combination! So I give her time, treats and special outings as I did for her recent birthday, as well as DVDs, new clothes and pretty bags. Last year Santa got her an an iPad, which we both share. It has been fairly successful, but again I have the problem that most of the APPS for her intellectual level are too babyish*.

I have this need for things to be age appropriate for her. So no bibs, no soothers and no rattles - and I've seen them used with her peers. Ok so I know I have her in an adult buggy instead of a wheelchair, but that's because we live in Ireland. It rains here. A lot. It gets cold. The pavements and paths are bumpy. And Smiley likes to go out, at least once a day. Our lives would be much poorer if we only had the use of a wheelchair.

So back to the presents. When she was younger, the best presents had some sort of cause and effect:

...Pull out jigsaws

...A telephone

...A box of small musical instruments

...A tea set including pots and containers in which to hide real food for her to find

...Picture/story books - she can listen and turn the pages

...A dolls house

Smiley chose this herself

...Pop-up toys

...Something to hold - every child is different, mine likes brushes, combs, tennis rackets and the upright bit from the Connect Four Game - don't ask...

...And for when she is bored with everything else: her portable DVD player.

My best advice? Take your child on a tour of a toy shop and ask them to 'show' you what they would like from Santa.

As for aspie boy, his anxiety now means that he cannot make a decision. He will nag and nag and nag until he gets me to order the latest game from Amazon and then five minutes later he will start to backtrack and say he doesn't really want it after all. With the number of cancelled orders on my account I'm surprised they haven't blocked me yet!

I need to make Christmas special for him too, but at the moment I don't know how...

*I'm drafting a post about her favourite iPad APPS

A very special birthday weekend

2011-11-02T00:01:00.000Z

It all started on Thursday with the purchase of three chocolate cakes, a birthday card and a Halloween costume, which was a cheap rip-off, but was the only thing that worked. No prizes for guessing whose birthday was celebrated this weekend.

Yep Smiley made her unscheduled entrance into the world 15 years ago.

And I had a problem this year. What do you buy a non-verbal teenager with cerebral palsy for her birthday? Like most teenagers she has everything she needs, but she can't tell me what she wants.

So the only solution I could think of was to put some money into her account and organise a weekend to remember...

It began on Friday in school with a fancy dress Halloween party, the first birthday cake and face painting. I'm not so sure about the face-painting, I think perhaps she is too old for it - and not particularly keen either.

On Saturday we took the second cake to the Rainbow Junior Arch Club - another Halloween party. Again she is a bit old for the club, but enjoys all the attention and some of the activities.

I noticed that she wasn't as smiley as usual though, and on Sunday it was a struggle to keep her happy, even though we went shopping with her birthday money.

On Monday I found out why: she woke up with a nasty head cold. But even by the evening she was feeling better and well able on Tuesday for coffee and chat with the girls - Jazzygal and Jen - and a chance to finish off the third cake...

Night Clubs and Nostalgia

2011-10-31T12:05:00.000Z

Pressing my nose against the glass I could barely see through the fug of smoke and hormones. I was outside the local cafe, the hangout for all the cool teens, a shy awkward 13 year old with pigtails and glasses, but I wanted to be inside. I wanted to be part of the fun.

Fast forward a couple of years and I was a regular in that cafe. That's where my teenage social life started. And our town was not a bad place to be a teenager. Apart from the recording studios and the parties, there was a cinema, lots and lots of pubs, festivals, carnivals, shows, youth clubs and for a while a night club of sorts once a week on a Friday night. That was my first night club. Lots of Chic and strobe lights and disco balls and shiny dresses with slits up the sides. It was the same people every week, and I knew most of them. I loved it.

Sadly pressure from local residents closed it down since and many of our other teen hang outs have gone too. Funny how there has been more trouble from teenagers in the years since. Coincidence? I don't think so.

I got to thinking about night clubs after Angel returned from her post exam holiday in Majorca rhapsodizing about this giant night club, where she and ten other friends spent most of their week away.

I also went to a few clubs like this. At one in Manchester I was the only person in the entire place dressed in black. I didn't stay too long.

I was also insanely proud of my Hacienda membership card, as I *may* have mentioned before, but the club wasn't my favourite place to go. Apart from the night I saw a (very short) New Order set there, it was actually a bit dull. In London, friends took me to Heaven and the Camden Palace. But I just found them large and lonely. There was also a night club at the end of my road in East london - the Shannon - but perhaps the less said about that the better!

Once I married and moved to Dublin going to nightclubs seemed a bit pointless. But I do remember the Cathedral Club with affection - complete with a crucifix - or was it a dragon? - overlooking the dancefloor, which seemed very daring in late 1980s Catholic Ireland. Now I am single again I have been persuaded to visit the odd night club...I've had a good laugh with my friends, but without the fuzzy rose-tint of smoke, short sight and lots of alcohol, they just look a bit sad...

I still like the idea of clubs where I know people, so it can take an hour to walk around chatting and dancing and making new friends. And if they play the music I like, even better. So my favourite nightclub was that well-loved but off-beat Manchester, institution, the Cyprus Tavern . It was somewhere I could walk in alone, wear black, find friends, dance myself stupid and get my dinner - they had a late licence for serving chips...Happy days :)

#WordlessWednesday

2011-10-26T08:52:00.000+01:00

Why the Irish Health Service is in such a mess

2011-10-25T10:17:00.000+01:00

Okay so I hope you're not going to be disappointed now. I think there are a million reasons why the Irish Health Service is in such a mess. This is just one example, but if every little bureaucratic muddle like this one was reorganised and handled efficiently, a lot of money would be saved, and the time of well-paid, highly qualified healthcare professionals would be better spent...

This is my (latest) story

My son has not been sleeping well. Not an unusual problem for children with Asperger's or Autism. So one of his therapists prescribed melatonin. No problems so far. It was after 6 pm and I did the rounds of the late night chemists to find one that stocked it. I succeeded. The first shock was the price, but the pharmacist was lovely. She must have noticed me blanching and suggested I apply for a long term illness card for my son - one of the schemes in Ireland that provides approved medicine and equipment for free for children and adults with long term medical needs.

She gave me the application form. So the first challenge was to get it filled in and signed by the therapist who had written out the original presciption. You can't just send the prescription in with the form. That would be too easy. It all has to written out again. Luckily a follow-up appointment had already been organised.

So that was done and posted. The next stage was really efficient...I received the long term illness book the following week. I did a little happy dance :)

But then I discovered that even though I had the prescription and the book, I now had to go to my GP to get him to write the prescription INTO the book.

Next stop - the pharmacy. There was a different lovely pharmacist on duty. She looked at the book and told me that unfortunately she needed to confirm that the medications written into the book were allowed by the HSE. These are the medications that were put on the application form. Are you following me? Two different departments perhaps? One approves the card based on an identified illness and another approves the medications after you've got the card if they're on THE LIST. At least this is what I suspect.

As it was a Saturday she couldn't ring the HSE, but gave me a small bottle of medication to tide us over the weekend and promised to make the phone call on Monday. She did. And just as I was groggily leaving another dental appointment I heard the good news that all was finally approved. So now I'm heading out into the Dublin floods to collect....

Finally if you want to read something funny instead, head over to Northern Mum. Just put the coffee down first...

Targeting the most vulnerable: Smiley's School

2011-10-18T11:44:00.000+01:00

I was at a meeting last night. It wasn't a political meeting. It wasn't a meeting full of 'bleeding hearts' or woolly left do-gooders.

It was a meeting of a small group of parents, all of whom have children with complex special needs. And I left it feeling very tired.

The first bombshell was a rumour that the Government is considering means testing Domiciliary Care Allowance, the payment that carers get for children with special needs. It's a universal payment, a concept that seems to be out of fashion right now. But they provide the ultimate safety net and help in a small way to pay for all the extra costs of rearing a child with special needs. So important right now, when all other income is under threat for so many families.

We heard about the effects of staff shortages. Limited nurse cover for children with complex medical needs and even more limited replacements due to the ban on recruitment in the public sector. Is one nurse for every 16 children really an acceptable ratio?

Transport for the children is apparently being outsourced to save money. So during the snow the school buses did not run, but the private ones did - otherwise the drivers did not get paid. Not an issue for me, but a worrying change of priorities perhaps.

A haphazard approach to respite with some families getting lots - especially those that shout the loudest - some getting a little, and some getting none at all.

An extra child in some classes means that there is little one-to-one time for each child. And all the group activities have to run to a tight schedule. So if one child has an accident or a meltdown, the timetable has to be abandoned, and the children may have to sit and wait until the crisis has passed.

Each child used to be taken out of the classroom for individual speech and language sessions, occupational therapy and physiotherapy. Now these therapists are mostly available for consultation only: the actual work is done by the teachers and SNAs .... on top of everything else.

Swimming used to be every week, and the school has its own pool. But the older children only get it once a fortnight now - not enough time and not enough staff.

Despite this the school is still doing a fantastic job. I do not know of anywhere else that would give Smiley so many opportunities to fulfil her potential and enjoy her life. I do worry about the younger children who may miss out on all the intensive help that my daughter enjoyed.

The cutbacks are not desperately serious. Not yet. They just make me feel sad. I know that Smiley still smiles a lot in school, as I get to see the photographs. And she still gets excited when I tell her:

"You're going to school now, on the bus!"

Long may that continue.

And just one more thing .... as I was writing this, something heavy fell through the letter box. It was galling to find that the envelope contained two glossy reports produced by the organisation that now runs Smiley's school. That did make me angry...perhaps they were produced cheaply, but are they really needed at a time of severe cutbacks?

Celebrating niceness: a #specialsaturday post

2011-10-15T10:27:00.000+01:00

Being nice is seriously underrated.

"She's very nice," damns with faint praise. As though you can't think of anything else to say about her. People have to be clever or cool or fabulous it seems. Nice doesn't cut it any more. I don't know why, because people who are nice are the people who brighten up our lives. And this week I'd like to thank the following...

...I was late as usual on Wednesday getting to the #Oct12Tweetup for a rare night out but Jazzygal and Nan-P waited patiently outside the pub for me to arrive. The tweet up was a chance to put faces to the names and pseudonyms of some of the people I follow on twitter - a really interesting evening! And two people said unexpectedly lovely things about my blog.

...Coffee on Friday morning organised by Carol and Tori. Sorry I couldn't stay longer.

...Smiley's social worker who arranged an impromptu meeting with the head of respite to discuss my concerns - which caused me to cancel her monthly breaks back in May. (I was at the school for her IEP). After looking at the records, it seems that she was so happy - and smiley - that the staff thought that she wasn't ready for bed and were allowing her to stay up very late. It's never easy to sleep through in the respite dorms, as during the night there are peg feeds to be sorted, children to be changed and medicines to be given. But it seems that Smiley was only getting about 4 hours sleep - no wonder she was cranky for days afterwards! In future she will be put to bed with her pals at 8.30 or so. And respite will start again in November.

...One of my best friends who still comes every week to help with Smiley's physiotherapy programme.

...My Dad who forgot about his own problems to do the fatherly thing and tell me to go and get myself sorted even though I had a week full of appointments for the kids. And my friend who fitted in therapy appointments for me even though she is the busiest person I know.

Looking back, it's wonderful to realise how many people were nice to me this week and what a different it made. What about you?

This post was written for Wendy's specialsaturday initiative to help raise awareness of autism and other special needs. On facebook at specialsaturday or #specialsaturday on twitter.

My ‘Blogging for Therapy’ post for Netmums

2011-10-11T12:33:00.000+01:00

It was a lovely surprise and honour when Kate from http://katetakes5.blogspot.com asked me to contribute a post for a ‘Blogging for Therapy’ week on the Netmums blog www.netmumsblog.com. Netmums is the UK's fastest-growing online parenting organisation with over 1 million members and 4 million visitors. Gulp!

So here it is if you want to pop over and visit:

http://netmumsblog.com/2011/10/11/blogging-as-therapy-day-2/

The Boy who cried Wolf

2011-10-10T11:17:00.000+01:00

Aspie boy loves wolves. There is always a wolf calendar in the kitchen that he can see from his seat. It's a tween version of the daily schedule that many parents use with children on the autistic spectrum. When he was younger, one of our favourite stories was the Boy who cried Wolf. He loved it because it was about wolves, and I loved it because it emphasised the consequences of telling lies. I have a problem with lies and liars. I can only recall telling lies myself on 2 or 3 occasions and I felt terrible afterwards. Perhaps PR suited me as a profession because I've got good at spin, in order to avoid telling actual lies.

Perhaps I did not read the story enough. I thought that aspies didn't tell lies. But it seems that he has been doing exactly that. Or, in his own words, 'half-lies'. And now he is seeing that his lies mean that no-one now knows whether to believe him or not. Even me. You see the problems are at school and I'm getting one story from the school and another from my son.

I knew that school would be more difficult for him this year and I tried to prepare him. All his friends bar one had moved on to secondary school, the teacher he loved has left and more work is expected of 5th year pupils. So I was anticipating problems. But not lies.

Almost every day he came home saying how much he hated school, tales about all the trouble he was causing and begging me to do something about it. Now perhaps I should have noticed that the school was not contacting me, but I guess I was a soft target as I'm so worried about my Dad at the moment. So I rang the school, emailed the school and even turned up one day, but the principal was too busy to see me.

Finally I received a curt note from the school. This is an extract from it:

**** continues to tell you lies. I don't know how many times so far this year **** has told you complete rubbish yet you continue to believe him.

After seeing this I took all his consoles and locked them in the garage and stuck the house rules back up on fridge again. He was to get the consoles back one at a time if he behaved. As I told him, dealing with anger and violence and social deficits is one thing, but I cannot help him if he lies to me. Cue another enormous meltdown.

It also looks like my relationship with the school is now in tatters. I've no idea how to get over this. Worse, I'm now getting reports that my son is starting to misbehave in school.

This last weekend my son was in a downward spiral. He barely ate. He begged to be let off school today. He says that all his classmates bar one are 'annoying' him. He says the amount of work he is being given is 'abusive'**. He says that no-one is listening to him or being nice to him. I don't know what to believe. I know he has control issues and I am so afraid that he is just playing a game. Push me and push me and scream and scream just to see if he can control my behaviour - in this case getting me to go back to the school and 'fix' everything for him. Which might mean him changing classes or schools or getting less homework or getting a home tutor. But I don't think he'll be happy then either. Somehow he needs to learn to enjoy the life that he has. If only the autism service providers would do more than just organise meetings and provide some real help and advice....

**not true!

Desperate measure on the domestic front

2011-10-08T14:38:00.000+01:00

Don't read if eating, just eaten, or about to eat, or maybe don't read at all...

My Sunday dinner was spoilt this week.

Which is a shame because it is a big production in this house. Angel is rather partial to her Sunday roast, and I like playing the game of let's see how many meals can be made from one chicken. So most Sunday mornings are spent peeling mountains of vegetables, preparing sauces and stuffing and of course disinfecting the kitchen after dealing with the raw meat.

I am very careful about raw food and leftovers and how I dispose of them.

So I nearly got sick when I went out to the smelly dustbin in the yard to find these little white wormy things crawling up the inside.

Yes, I had maggots in my bin :((

Even typing the 'm' word makes me want to retch and brings back nightmare memories of hiding and shuddering behind the sofa during a long-ago episode of Dr Who.

I didn't dare tell the kids. I can imagine that aspie boy would have demanded an immediate evacuation and even I was afraid to sleep on the Sunday night for fear that they would creep into the house....

Do you ever wonder about the lovely life of a SAHM and carer? All those child-free hours while the kids are in school?

Well last Monday they were spent cleaning maggots out of the bin.

I decided to do the dirty deed in the back lane - currently only used by a biker who revs up and down while our children are trying to sleep. Some time later with the help of a large bottle of Jeyes fluid and gallons of water, the bin was clean and so was the lane. Thinking my troubles were over I started to clear up and bring everything into the back through the rarely-used garden gate. Only to find that it wouldn't close, having dropped off its hinges during the hour or so that it had been open. As I *may* have mentioned before, I have a problem with drills, so getting it shut was finally achieved with a combination of a tent peg, WD 40 and a hammer. God knows if it will ever open again!

And still on the list: The case of the broken long life light bulb. They have mercury in them don't they? I haven't been able to find out if this is dangerous or not, but I spent a long time cleaning out the shed just in case... The kitchen tap is still dripping 15 months on, and a few bits have fallen of it too. But it's not a normal tap apparently. So a special solution will be needed. I haven't found out what this is yet. And let's not mention the fridge, which still struggles to maintain a safe temperature. Then there's the one remaining light bulb in the kitchen: The lovely light fittings were chosen when I was still married to the man who can fix all things and sometimes did. Changing the bulbs requires a ladder, a screwdriver, a bowl of soapy water and someone underneath to catch any of the glass bits that I might drop. Six days later and I still have only one bulb ....

Oh and for my Facebook friends, I hope this post explains why I was a bit grumpy last Sunday!

Fighting for Domiciliary Care Allowance for my son with Asperger's

2011-10-04T00:09:00.000+01:00

I got this in the post today:

It is clear from your application that your child requires additional support; however, while the diagnosis of your child's disability is not in question, the medical evidence provided does not indicate that the extra care and attention required is substantially in excess of that required for a child of the same age who does not suffer from your child's condition. As a result your child is not considered eligible for Domiciliary Care Allowance.

I suggest that my blog proves otherwise! But then the Department of Social Protection has probably not found it yet. And it's not just me. Apparently many children with Autism, Asperger's and similar diagnoses are routinely refused DCA at the first application, which is then followed by a round of appeals and reviews, presumably designed to sap the will of parents already struggling with the difficulties of rearing a child with asd.

Facebook friends have advised me to keep a daily diary of everything I have to do for aspie boy. As I need to start the appeals process tomorrow, I started writing the diary today. And here it is:

A Day in the Life of a 10 year old aspie....with no meltdowns

(probably very boring to read unless you have a similar child)

At 6.15 am he calls me, so I go down to him, give him a vest and pyjama bottoms and wait while he puts them on. Then we go downstairs and I make him a hot chocolate. He goes into his den and plays. At 7.30 am I go into him and remind him to get dressed by 8. I give further reminds at 7.45 and 7.55. At 8, I remind him to come in for his breakfast. And again at 10 past 8. I make drinks for breakfast and lunch. Once he comes into the kitchen for breakfast I have to keep reminding him to get his bowl and cornflakes as he keeps running up and down the room.

After breakfast I remind and supervise him in putting on his coat and shoes, and cleaning his teeth. When the school bus arrives at about 8.30 am I need to see him across the road because he just 'forgets' to look out for cars unless reminded.

He comes in from school at 2.40 pm looking glum after a run in with another boy who has apparently threatened to hurt him. I remind him that he needs to talk to his teacher. He also has a mark on his hand and a pain in his wrist, which needs lots of plaster tape and Nurofen before he will use it. It seems he refused to do school work on the strength of his 'sore' wrist and was given extra homework as a result.

The school provides lunch to stop the boys eating rubbish, but my boy won't eat it, and while I put a drink in his bag, he often forgets that too. So he is hungry and thirsty when he comes in. But I still have to tell him to finish the drink in his bag and make him lunch, followed by 20 minutes in his den to calm down. Then he comes into the kitchen and it takes another 55 minutes before I can get him to start the homework, and 45 minutes to complete it. I have to supervise it all, to keep him on task, and then check it.

Three dinners need to be made: Smiley only eats mashed potato, but he won't touch that, so I also make lasagne and peas for me and Angel, and spaghetti bolognese for aspie boy. About 8pm I go in with medicine, a drink and a piece of dark chocolate. He gets a 5 minute warning before his shower, which turns into 10 minutes as he asks for another hot chocolate. Then I have to wait while he checks something on his laptop. Into the bathroom, where my role as usual is to remind him of what he should be doing. After the shower it's up to his bedroom. I read him a story but he keeps forgetting to listen and tries to engage me in conversation. Then I say good night, but because of his fears I have to sit on the end of the bed and wait for him to go to sleep. This can take from 10 minutes to one and a half hours. Tonight I was back downstairs by 9.45 pm. Finally I got time to complete a long-term illness application for him and to complete this diary...

My (special needs) bucket list

2011-10-02T08:04:00.000+01:00

(Another middle-of-the-night post)

...To get 8 hours uninterrupted sleep. Or possibly a bit more.

...To eat an entire meal without having to get up from the table.

...To hold a real conversation with my son about something that interests me.

...To spend a full day on the beach.

...To climb another mountain or two.

...To go on a picnic with the kids without anyone screaming or running away from wasps, bees, flies, spiders, or any other bug you can think of.

...To go on a proper holiday where they drive on the wrong side of the road and I don't recognise the food on the menu.

...To have the time, energy and support to get another job.

And I promise to write something more cheerful soon x

Taxi-ng my patience

2011-09-29T20:39:00.000+01:00

Picture the scene.

It's a Saturday night. You're meeting friends to see a show. Escaping special needs for a few hours. And as usual you have a plan. You know what has to be done, and how long it will take to get ready. The babysitter is booked for 7.30 and you need to be ready to go.

But special needs doesn't work like that. At 7.25 I was still scrubbing the bathroom. All thought of getting the bus or even driving into town was gone. At 7.29 I rang a local taxi service and asked them to send a cab to the house in 15 minutes.

These are not the taxis mentioned in this post

But it arrives almost immediately. Meantime I'm letting in the babysitter, hoisting Smiley into her bed, throwing on a bit of make-up and the only dress that was ironed and into the taxi before 7.50. To be shocked to find that the meter was already almost at €10.

"Surely you don't expect me to pay that," I said, but just got a non-committal reply.

I nearly got sick when I saw the final amount for the 2km journey. Once again I queried it and he said he was waiting 25 minutes (not true). I was stunned.

So I told him in graphic detail exactly why I had to call a taxi, and told him that I would never ever contact his firm again. I left the fare and left the cab. It was not a good start to the evening.

Was the taxi deliberately sent early? Did they gamble that it was an urgent situation and I would ask the taxi to wait, rather than order another one and risk being late.

Is this a scam? Was I had? Or just a normal commercial transaction - with the usual 'buyer beware' caveat.

Worse, I later realised that I had once ordered another urgent cab from the same firm to take aspie boy to hospital with suspected meningitis** when he was small. When I complained about its failure to arrive, I was told:

"That's Dublin taxis for you, love."

After that incident I didn't order - or even use - a taxi for many years: I even walked to hospital for procedures after fasting rather than hail a cab.

But back to my night out. I did not let the stupid taxi rip-off spoil my evening. I had a great time, but had to leave a little early as aspie boy would not go to bed for the babysitter. So with great trepidation I jumped into a taxi once again. I needn't have worried. This time the journey was completely different and less than half the price of the earlier fare....

What about you? Do you have any taxi tales?

**I added in this link as I was contacted by chance while I was drafting this post and asked to help promote Meningitis Awareness Week.

My Dad, my daughters, the car and my son

2011-09-25T23:04:00.000+01:00

My Dad

He is better, and feeling more comfortable, so he has come home from the hospice. And as I was in Wales again during the week, I was able to drive him home, which was lovely. Then on Friday night my brother cooked a celebratory meal for everyone, except his elder son and Angel who have both started university.

My daughters

It was Angel's first time in charge of the house. I was a little nervous....especially as it was Fresher's Week. With so much on my mind all I did was leave a bottle of milk in the fridge, €20 for food, the phone number of the other keyholder and a reminder to unplug the iron and lock the doors at night. But she was so sweet, even texting me in Wales to let me know when she got home after a night out. I don't think I would have done the same as a student if mobile phones had been around in the 80s!

On my return the house looked untouched - by human or Hoover. But no sign of any wild parties either, so I think it went pretty well.

And Smiley? Well she is exactly the same....appreciative of every bit of attention, fully grown but very different. Like the way she still has the hands and feet of a toddler:

I'm convinced that there must be another child like her out there somewhere. Hopefully if I keep writing about her here, I will get some answers some day.

The car

Je mange mon chapeau...

My Citroen Berlingo is like a Tardis on acid and just as odd-looking - I'm thinking of calling it Noddy as its styling is straight from Toyland. The space is amazing: It's half the size of the old car but I can fit in just as much stuff. It will overtake other cars even fully laden, cruise along at 80mph * and still do 50 mpg. It really is a recession-proof vehicle. And it has a manual gearbox, which makes me almost happy to be driving it :)

* obviously I discovered this by accident when I was driving downhill and looking at the road rather than the speedo...

My son

There's only been one major meltdown from aspie boy since our epic trip to A&E. It was on the evening of the day that my Dad came home from the hospice. I suspect it was due to stress caused by overexcitement after spending the afternoon at his cousin's house, but knowing why it happened did not make it any easier to deal with, I was just so upset for my Dad - who was then exhausted the next day.

It was the trip to Wales that caused all the problems, even though it was organised to suit aspie boy as much as possible. He was very angry about everything, with a huge sense of entitlement thrown into the mix:

"I'd better get something good for this."

And,

"You're the one who needs a therapist."

And,

"I want the living room at home, it has a better telly and I deserve it."

I am not going to tell you how I responded to that last one, given that the living room is a console-free ~~heaven~~ haven...

Even this morning he woke up angry, especially when he found out that the playdate I'd organised for him was only to last two hours. But when I went to collect him I found I had a different child. One who said good bye to his friend and thank you to his parents, without being prompted. And later he helped carry in the grocery shopping, without being asked.

Aspies.

They always wrongfoot you!

Will Budget 2012 be any different?

2011-09-22T11:33:00.001+01:00

We have a new Government here in Ireland, voted in on a tide of promises to keep local hospitals open and maintain social welfare levels. But what choices are available to this Government? It seems that policy direction is being decided by the 'Troika' of the EU, ECB and IMF, and their strategy seems to one of cutting and more cutting of both benefits and services. This situation is a legacy of the previous Government, but will the new one have any wriggle room, will there be a new direction, or just more of the same. And how is the Government going to sell this to the electorate? Well one tactic is diversion, and the upcoming Presidential Election certainly seems to be taking up more media time than the Budget, but the latter will surely have a much bigger impact on the lives of so many people.

The wonderful Irish Mammy on the Run wrote last year about the budget process in Ireland and she kindly gave me permission to reprint it here as a special guest post. Sadly she is not blogging at present, but you can follow her on twitter at @treasadevine.

Read and remember, and let's see if anything changes...

How to manipulate the masses

Tuesday, May 18, 2010

I have been listening and watching a few current affairs programmes recently and feeling very strong deja-vu moments. What I am referring to is the whole budget 2011 malarkey and savings of 3 billion euros. If I am not mistaken at the 'toughest ever budget' (Budget 2010) we were distinctly told 'the worst is over'. To which I remember Fine Gael's Richard Bruton quipped at the time; that was like Bush declaring "mission accomplished" on the Iraq War in 2003. Need I say anymore?

So I was not surprised two weeks ago to hear from a spin-doctorified Cowen (who must be popping happy pills at the moment as he is smiling alot more) that another tough budget is on the way. That his depts must go back to the drawing boards to find more savings. The new minister for social and family affairs O'Cuiv has categorically stated that nothing is off the cards.

We (PACUB*) suspect that also means child benefit is back again on the chopping board. But before we know the real plans of who will get their asses kicked this time, there will be a series of kites to test the water. As I watched yesterday’s current affairs play out I noted the exact same tactics which were used with the child benefit cuts now being floated in the media (via the government) with regards to touted pension cuts. Here's my prediction of the next few months and the work of government spin-doctors:

Step 1: Fly a kite early on
Very early on to the budget date, say May, just as the weather is getting better and people are thinking about their holidays (including TDs who take a 3 month vacation) fly a kite, that is to say, throw something out there in the open to test the public's reaction.

Don't have the Taoiseach say it have the Minister of a particular Department (Social and Family Affairs) for example test the most contentious cut eg pension (previously Hanafin did this as regards child benefit cuts).

Step 2: Be unspecific with details
When the minister has speaking engagements or is being interviewed, get the minister to give really fluffy answers about 'not ruling anything out' so nobody feels safe. Create a situation where you can bully one group of people for a short time and then slowly introduce a second group of people with a different cut this will help later on to create disunity. Indeed if a Minister is asked in particular about cuts to pensions or social welfare have him or her say something bland about patriotism or just quote a figure of how much pensions/child benefit have increased over a 10 year period and how this is unsustainable.

Step 3: Keep the people guessing
Over the next few months, keep the people guessing never let them feel like they know what is going to happen as they might just have time to unite. Make sure you take the 3 month break of silence during the summer so people forget, go on their holidays and when everyone is back in Sept hopefully there is an ash cloud or other disaster to distract them from forming a unified opinion on any backlash to the budget.

Step 4: Create a profile for low profile politicians
Get certain low profile FF people out in the public who are not ministers and are not close to the action to speak on behalf of the government. This means that very quickly on people realise these politicians don't have the answers and are just the fall guys to tire people out from guessing. These certain low profile FF people could be chosen from strategic constituencies where other parties might have a higher/stronger profile. Thus when the fall guy eventually shows his hand 'how his connections and his discussions with top ministers' eventually curtailed the cut (ever so slightly), they are supposed to reap the positive public sentiment.

Step 5: Tease out new budget cuts in new directions
Coming nearer the budget when people are sick to death of it having heard budget, budget, budget and financial ruin stories for the past two years and are tuning off into other methods of entertainment, drop the real bombs. Particularly when people are distracted with other news (eg sickness of a minister, independent TDs to step down etc)

Announce the 'real core cuts' when important news has flooded the airwaves or when the dail is about to go on the mid-term/halloween for media and there won't be time to have a coherent reaction from affected people.

Step 6a: Budget Countdown: Float new kites via Independent Commissioned reports one month before the budget, when the interest is back again on the budget - throw out several more new kites at the same time, consider means-testing, consider having independent financial consultants (Mc Carthy, Commission on Taxation, TCD professors etc) announce how they would make the spending cuts. Make sure there are several differing opinions to confuse the masses eg 20% cut,15% cut, 50% cut, 10% cut -- talk about cutting from those on the higher tax bracket, differential rates for double income vs single income, talk about bringing in new levies.

Talk about taxation, talk about means-testing, then have experts discuss the merits and the problems with each. Then leave at least 5 to 10 options for people to get their heads around. Generally create mass confusion so all the pressure groups cannot speak with one voice against the cuts.

Step 6b: With new information play people off each other in public, create discord. Create public debate settings but remove politicians from the public eye. Create in fighting matches between the public eg you can create dissident voices eg Public Sector Vs Private sector or indeed wealthy Vs poor, or childless couples Vs families, single person Vs couple, double income families Vs single income families, pensioners Vs families, social welfare Vs PRSI workers etc. Make sure that the worst debates happen around the worst weather so people will not mobilise and strike in public. Aim for October/November/early December.

Step 7: Disarm informed opinion
Never, ever share the budget breakdown with anyone. Do not arm the public with information where they could make informed decisions on how best money could be saved or resources could be re-directed. Under no circumstances make the final cuts available in case dreaded 'case studies' with real life examples start to appear in the media to garner public sympathies against the planned cuts. Make it impossible for people to say how the cuts will create havoc in their lives until it is too late for them to react.

Step 8: Threaten IMF or Europe to take over
Explain to the now bewildered public that the finances are in such a mess that International Monetary Fund or the European Commission will need to come in and take over. Threaten that their cuts will be so, so much worse in fact make out that you are 'the good guys.'

Step 9: Explain the consequences of no action
Explain the dire circumstances, outline time and time again the consequences of no action. Tell the public that no one in the world will ever again trade with Ireland, all the multi-national companies will shut up shop and leave Ireland, young people will emigrate and Ireland will become a ghost land.

Step 10: Announce the budget and saturate the media
In announcing the budget, come right under the most common estimation of the cut say for the example the common opinion in the media is a 10% cut then make sure you come under say 8% or 5%. This is known as a sweetener, and the people are happy because they think 'it could have been a lot worse.' End every media report with politicians proclaiming that 'the worst is over.'

Next budget, repeat steps 1 to 10...

------------------------------------------
*PACUB was a group of women campaigning against cuts to child benefit. It was led by Irish Mammy/Treasa, and I helped out in the background. A petition with 16,000 signatures was handed in to the Government and the Opposition parties at the time pledged not to cut child benefit further.

My baby was saved, now I want to save others #healthworkers

2011-09-18T21:55:00.000+01:00

She was still so tiny. Less than 3lbs at 3 months old. But she'd made progress. Finally Smiley had graduated to the Paediatric Unit of the Maternity Hospital, which should be the last stage before going home. But very quickly it became obvious that something was wrong. She kept getting spiky temperatures that didn't respond to antibiotics and her electrolyte readings were crazy. No-one knew what to do until a weekend locum thought of a very rare and dangerous disorder called diabetes insipidus. Within hours Smiley was rushed to the local children's hospital. That locum, whose name I do not know, probably saved her life.

I was asked to write this mini post by Heather and Steph in support of Save The Children's campaign to increase the number of #healthworkers in poorer parts of the world, especially East Africa where the lives of thousands of children are once again under threat from drought conditions. They are likely to die from simple preventable childhood illnesses, never mind rare problems like diabetes insipidus - which Smiley no longer has. And that's another story...

Save The Children has enlisted the help of the Mummy Blogger community (apparently that includes me!) to get as many people as possible to sign this petition before Tuesday when it is due to be presented at the UN General Assembly.

So I'm asking these bloggers to get involved as well, and all the details are here:

I've found some reasons to be cheerful

2011-09-15T16:56:00.001+01:00

I really need to take part in Michelle's Reason's to be cheerful weekly link up again this week. It's all about the good news, and yes I do have some!

1. Angel's Debs. She had a fabulous time, and was dropped home at 6.30am the next morning, happy, but in a good way. And with apologies to my Facebook friends who have seen this already, here she is in all her finery before she left...

2. I finally got to collect my (nearly) new car, chosen because it cost me nothing to 'buy' and is wheelchair accessible and very cheap to run. I have never been so unexcited about a car purchase in my life, but even though it looks quite mad, it's actually quite nice to drive...

3. Finally, if you see a group of madly excited mothers letting hair down in Dublin City Centre on Saturday night, it's probably the autie mums out on the town.....and I'm going with them :)))))

Cutbacks cause crises - my aspie boy is the proof

2011-09-12T23:54:00.000+01:00

By lydiashiningbrightly

Do cutbacks save money? Well not in my son's case. Since his first mega meltdown in January, I have been writing, emailing, phoning and begging for help for aspie boy. All I have got is meetings and arrangements for more meetings. But no action, no real help for him or the rest of the family. He is on the waiting list until September was the message I got over and over again. I am assuming that the waiting list was due to cutbacks, I would hate to think that children in need were kept waiting for any other reason.

One thing was useful - a workshop on anxiety and that did help me to develop strategies to avoid meltdowns before they passed the point of no return. Sometimes they worked. But sometimes they didn't.

Since the end of summer camp (July Provision) things have been horrendous and almost every day has been a struggle, despite the whole month of August being organised around his needs.

For the first time I was looking forward to the start of the school term, and I did enjoy the peace and quiet in the mornings, but I soon began to dread the beep beep of the taxi horn announcing his arrival home at 2.45pm. There were meltdowns almost every day. Again I contacted everybody and organisation I could think of, but I made very little progress.

On Sunday morning, at about 6am, he woke and went straight into meltdown. And this time he crossed a line. What he was saying was unacceptable and unthinkable and I knew I had to do something drastic. Luckily he did accept that he needed help, so I left Angel in charge of Smiley and we headed for the local children's hospital. He was still in his pyjamas...

We arrived and were taken almost straight through and put in our own room. FINALLY we were being taken seriously.

They listened and they saw.

I wasn't sure what I wanted or expected to happen, but after the on-call team had spoken to me and then him, it was decided that he needed to be admitted.

It took a long time and a lot of persuasion before I could get him upstairs to the ward and then I had to dash home and sort out Smiley and overnight care for the girls: I know Angel is 18, but she was too upset to cope on her own. And she had already been caring for Smiley for almost 9 hours without a break, which has never happened before. My absence tipped aspie boy back into meltdown again, even though his Dad was there. And while it was horrible for everyone, including my son, at least some people who mattered were finally getting to see and understand the kinds of problems that have been happening at home. When I came back into the hospital I was able to help him calm down. I stayed the night and all seemed well in the morning. We were able to see everyone we needed to before lunch, and there was even an understanding that a child with aspergers finds it hard to wait indefinitely. Plans were made, letters written expressing concern that my son had ended up as an emergency patient because no services had been provided and short-term help was also arranged. We were able to leave the hospital feeling fairly confident that we would be able to cope, and get the help he needs as a priority.

This makes it all sounds fairly straightforward. It wasn't. There were the difficulties involved in persuading my son to agree to go to hospital, and then go along with the treatment and the way the hospital operates. Lots of arrangements had to be cancelled and new ones organised and once again my friends just dropped everything to help. At the same time my Facebook friends were with me every step of the way providing support, advice and information to help me get through the day.

But why did it have to come to this?

Even if you don't care about the emotional fallout for this family, just do the maths: so far I've attended a number of meetings attended by well paid professionals. At the hospital there was a medical team, a nursing team, and a psychiatric team, involved in his care. It must have cost a fortune. Surely it could all have been achieved 7 months ago when I first flagged the problem for a fraction of the cost and without all the heartache and pain and upset that we've all been through this year. Would it really have been more expensive to listen to me, listen to him and help him?

This weekend my family was in a crisis. A crisis caused by cutbacks I believe. And a crisis that cost.

No-one told me I had to host a debs party...

2011-09-09T18:21:00.000+01:00

I should have taken more notice. I thought it was all organised. Angel said she wasn't that bothered anyway. She didn't really want to go. Now, just 4 days before the event, the debs has become THE DEBS.

You see it's all new to me. At my school we just had this dance thing in the school hall at the end of 6th year which involved learning to waltz and wearing a long dress, which I made myself .

This is something different entirely. A stretch party limo has been booked - and even the mention of 'party limo' has me putting my fingers in my ears. They are going to a hotel and the bus will bring them home again at 7am. She has the dress and everything else has been ordered off EBay. Every morning another parcel seems to arrive....

That was supposed to be all. But now it turns out that the original plans to do a little send off for Angel and her pals at a friend's house are not going to work. Instead my ex and his family are coming to my house to see The Dress, and presumably Angel as well. Cue complete panic. Since hearing this I have already cut the grass and waged war on the weeds. But I have a busy weekend ahead and I was not born with the domestic goddess gene, so apart from baking brownies and cookies, what else should I do?

There is one corner of the house where order is maintained : the hot press - or airing cupboard as they say across the sea - but I lose interest after that, and the ex-laws are not very likely to be looking in there. But what will they spot? How can I avoid looking like someone who wields a mouse more than a hoover?

Should I tackle the cobwebs in the cornicing or the dust on the door tops? What would you do?

Update on my Dad : he is now in the hospice, and while he is not feeling great, he is happy to be there.

The Gallery: From Then 'Till Now

2011-09-07T16:55:00.000+01:00

I'm not a big shoe-lover, but Angel is. And this is a very brief history of her shoe collection from 18 weeks to 18 years...

For this week's Gallery over at Sticky Fingers

Five things I want you to know about my father

2011-09-02T10:18:00.000+01:00

Dear Children,

Since my father and your grandad is ill, you may already be starting to forget how he is when he is well. How he loves bringing Angel shopping for clothes, chasing aspie boy around the park and then losing to him in chess, and playing gentle games with Smiley.

But there is much more to him than that, and these are some of the things I want you to know about him...

1. He loves you all very much.

2. He is the cleverest person I know. Growing up with him as a father meant daily conversations about politics, economics and society. Relaxation for him rarely means watching TV. Instead he plays board games, sport or starts another discussion. He was always challenging my ideas - often with an original angle. Now I always ask his opinion before making a difficult decision, because his advice is usually the best. And I seek out other clever people, because I enjoy their company.

3. He was the first person in his family to go to university, but Brideshead Revisited or Animal House it was not - he got married! Being ahead of his time, he and my Mum decided to have fun and travel during their twenties and leave child-rearing until their 30s, much to the consternation of their own parents...

4. He was working in computers in the 1950s, when few people had even heard of them. In the 1960s he set up his own computer business and I can still remember his first computer - it filled an entire room. When I was small it was a special treat to be allowed to press the 'red' button and watch the paper tape emerge from the depths of this giant machine. Today he uses a Mac, partly due to my obsession with all things Apple!

5. Life has been good to him and it can be for you as well if you have a positive attitude, live life without fear and seize the opportunities that are offered to you.

Love Mammy xx

Thanks to Ella for this opportunity to write about my Dad, who is the main person I am thinking about right now. The theme of her Friday Carnival is ‘Five things I want you to know about your father’, and it will go live on Friday 9th September.

What do you wish for when time is running out?

2011-08-29T19:24:00.000+01:00

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...

2011-08-21T22:28:00.000+01:00

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

2011-08-18T21:49:00.000+01:00

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

2011-08-16T11:22:00.000+01:00

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?

2011-08-14T17:27:00.001+01:00

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

2011-08-11T19:39:00.000+01:00

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

2011-08-07T08:53:00.000+01:00

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

2011-08-01T23:25:00.000+01:00

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.

And the meltdowns get worse

2011-07-26T20:09:00.001+01:00

Aspie boy's meltdowns hit a new level last week, so when Aleyna's Mum from Doing It All for Aleyna asked for a guest post, it was the only thing in my head.

Even if you don't want to read yet another meltdown story you should check out her lovely blog.

This blog has been nominated for lots of awards and her love for her daughter shines through every post she writes.

Things I like about the school holidays

2011-07-24T13:32:00.000+01:00

Even the bus drivers were smiling more than usual as they dropped the children home for the last time till the end of August. It was Friday, and the end of July provision, which for my kids was a school-based summer camp.

It means that I have all three children 24/7 for the next 5 weeks. And while it gets stressful at times, there are lots of good things about the school holidays...

...I can switch off the alarm clock.

...I am lucky enough to have a home help on school mornings, but it's great to get a break from needing to be up and dressed and awake for 6.40am.

...Smiley's enormous school wheelchair - the one that takes lumps out of the doors - can go in the shed. This will make much more space in the house.

...Smiley can enjoy her lie-ons and I'm hoping I might get a bit more sleep too.

...With no scheduled appointments or activities we can do our own thing. Aspie boy thinks this means that he can sit in his den playing with his games consoles for the next 5 weeks. But he would be wrong! I plan to get him out of the house at least once a day. There'll also be more time to enjoy shopping with Smiley and to visit friends old and new. And my family are visiting this week.

On top of that, yesterday Smiley and I got the chance to enjoy an all-too-quick coffee with the lovely Lynne from The Giggle Fest and her gorgeous daughter Holly. They were on a weekend break to Dublin while her son Jack, who is similar to Smiley in ways, was in respite. It was great to chat and find out just how much we have in common :)

Finally, I just need to announce the winner of the Powermat Giveaway: It's LM, one of my Facebook friends, and I promise I'll get it to you in the next couple of weeks.

Taking children away instead of giving help

2011-07-22T08:38:00.000+01:00

We thought it was finished. We're supposed to be living in this bright new future where children's interests come first. For most children that means living at home with their families. That's where they feel loved. That's where they feel safe. So when families are struggling - for whatever reason - surely the first response of the State should be to provide help and support.

In the Western World we think the State is on our side. Our countries are democracies aren't they? We don't expect the State to 'punish' us or our children unless we have broken the law.

So when families are struggling - for whatever reason - surely the first response of the State should be to provide help and support.

It's frightening to find out that this is not always the case: in Canada a little girl with autism was apparently removed from her home by social workers by after a runaway episode. She is currently in foster care and her father will have to wait months before he can go to Court to try and bring her home again. Her father is a lone parent and she has two brothers, one of whom also has autism.

This story feeds into some of our deepest fears as parents, especially if you have a child with special needs and feel overwhelmed at times by the challenges. Do you ask and beg and plead for help and services, or are you afraid that if you shout "I cannot cope" too loudly and too often, that social workers will come to your door and take your child away?

(I'm actually saddened to read the role of social workers in this awful story, as I have had a social worker for Smiley ever since she was born, and they've all been great.)

This post was written in support of the #blogforAyn campaign. There's more information on Facebook and a petition and a donation site. Another way to help would be to write to those people who can make a difference:

Stephen Harper

Office of the Prime Minister

80 Wellington Street

Ottawa, ON K1A 0A2

Fax: (613) 941-6900

E-mail: pm@pm.gc.ca

Christy Clark

Premier of British Columbia

Parliament Buildings

Victoria, BC, V8V 1X4

Fax: (250) 387-0087

E-mail: Christy@christyclark.ca

Mary McNeil
Minister of Children and Family Development

Room 306 Parliament Buildings

Victoria, BC V8V 1X4

Fax: (250) 387-9722

E-mail: mary.mcneil.mla@leg.bc.ca

Thank you for reading and I'm sorry it's only a short post. Please help this campaign in any way that you can.

Untangling the wires: Powermat review and giveaway

2011-07-19T10:23:00.000+01:00

The Powermat parcel had been sitting on my desk for several weeks looking accusingly at me, and the lovely PR girl who sent it must be getting impatient, but I have been very busy.

Now summer is here and Smiley and aspie boy are at summer camp. This means no homework battles for a few weeks, and a spare hour or two, so it was time for some unboxing. Beautifully packaged, the parcel contained an assortment of boxes. Like a lego kit with lots of little pieces that fit neatly together.

The idea of the Powermat is to reduce the clutter and tangled cables and wires that now feature in so many of our homes, especially from all those chargers. It is also energy-efficient, as the Powermat senses when your phone or whatever is fully charged and immediately stops the power, a feature I really liked.

The Powermat itself is sleek and discreet, so I was delighted when I saw it. But not so much when I realised that becoming wire-free could involve a fair bit of work from me! The rest of the unboxing went like this:

11.30 am: I sit down with a cup of coffee and unpack the big box, which contains 3 little boxes.

11.35 am - I read through the booklet. Clearly I need more coffee, *goes off to make some*.

11.45 am - Finally I realise that the oblong bit of plastic is a 'plug', but not an UK/Irish compatible one, which is why it has to be plugged into something else (in another box).

12.00 pm Success! I have managed to get one device charging - aspie boy's DS. So I have replaced one charger with a Powermat, a power cube on the Powermat, another lead and a special tip to connect it to the DS.

Hmmm, this doesn't really work for me. To be fair, if your phone and other devices can be charged directly on the Powermat, this could be a neat solution and it would make a smart desk accessory.

My Powermat is barely used - some boxes are still unopened - so I'm offering it as a giveaway to someone in the Dublin area. Just get in touch and I will pick a name out of a hat, if you want to leave a comment somewhere, even better :)

One positive outcome is that I realised that this family only charges about four items regularly. Each of us has our own special place for charging stuff, and actually we quite like our little routines...

Looking after your back: a guest post for SWAN UK

2011-07-18T10:26:00.000+01:00

My back is in bits and it's partly my fault. I'm too optimistic at times and still think I'm indestructible. I don't want other carers of children with disabilities to make the mistakes that I made. So this was the theme - based on a previous post - that I chose for a guest blog for SWAN UK (Syndromes Without A Name), a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. If your child is undiagnosed you will find great support at SWAN and they have a thriving Facebook page as well.

Thank you SWAN UK for this opportunity.

Not a boring week

2011-07-16T12:43:00.000+01:00

....Partaaay night....

It all started on Saturday when I headed out to an 80s disco night in aid of Assistance Dogs for Autism with some of the gang from the autie facebook group. Dressing up was no problem as my favourite 80s clothes and accessories are kept up in the attic - they're 'vintage' now, so Angel borrows them! I did consider posting up a few photos showing the leg warmers, fingerless gloves, a fabulous mullet wig and acres of denim, but perhaps they're safer left on Facebook...

Sunday was spent recovering, mainly from lack of sleep. And the only pain I could feel was in my back and my knees.

....Treatment....

Tuesday morning was spent baking a batch of chocolate cakes - my way of saying thank you to all the people who help me. Then I headed out to get some treatment. It turns out that my back is not too bad this time, but I really need more equipment to help me manage Smiley, and because it will be built into the house, I can't get it until my final separation agreement comes through.

As for my other problem, well it turns out that I have housemaid's knee. And please don't laugh all of you who know how rarely I can be found scrubbing floors. I'd say it's another consequence of the physical effort required to look after Smiley. Of course the cure involves rest - what's that? - as well as regular iceing to add to my 30 minutes of back exercises a day. What is going to give? Well this condition is also known as runner's knee, so no more running for me for now, which will enable my middle-aged spread to spread further.

....Travelling and protesting....

I excelled myself on Wednesday: after waving aspie boy off to summer camp Smiley and I headed off on a 140 mile round trip to a car dealer in Athlone to look at wheelchair accessible vehicles. They're lovely helpful people but it was depressing. They look at me as though I'm mad when I start asking about bhp. We got back just in time to squeeze in lunch and toileting for Smiley before heading to the Dail to protest about proposed cutbacks to special needs education. It was very hot and Smiley was not impressed when she realised that it was not a shopping trip. But it was good to see friends and familiar faces there and the politicians seemed to be taking it seriously - some gave speeches in support and others talked to the families who attended, including us.

....Lots of chocolate....

Thursday's highlight was a trip to a chocolate factory with Smiley and friends and family from the Rainbow Junior Arch Club. We all learned something new about how chocolate is made, enjoyed lots and lots of samples and got to decorate our own teddies. Definitely to be recommended.

A spare chocolate teddy bear was found for aspie boy, but he didn't want it: it was 'contaminated' after being decorated with white chocolate. Someone had to eat it though and you know how good chocolate is for stress...in my defence it's not all gone yet...

The trip was open to siblings, so aspie boy was invited. He said no of course, as he refuses to have anything to do with the club now. Just before the trip the school rang to say he'd been hurt during some horseplay but was fine now. When I got home he did not appear to be fine. But this is a boy who asks for a plaster and magic cream over every spot and cut, who demands Nurofen for every ache and pain and complains bitterly about how unfair it is that he hurts himself every day - ie when he stubs his toe.

So I didn't know what to think. But I watched him very closely overnight and surprise, surprise there's not a bother on him now...

....Harry Potter....

Three of us had been waiting for years for this day. We were determined to get a really early viewing of the final Harry Potter film, so I booked tickets as soon as they became available. The 10.30am viewing was perfect because Smiley was in summer camp and I could just take aspie boy out for the day.

But then he started to get anxious.

He stopped going to the cinema last summer after being terrified by one of the trailers shown before a children's film. And even though I offered to wait outside with him until the film started, he decided on the morning not to go, and went to summer camp instead. So it was just myself and Angel, which was lovely, especially as it rarely happens now.

And there were two more bits of good news...

To go on chocolate factory trip I had to collect Smiley from summer camp, so before we left I put her on the toilet, to the surprise of the staff who had simply been changing her: her toileting programme was abandoned by the school some time ago due to time pressure as a result of cutbacks and changes, and I will blog about that soon. Anyway an SNA came with me to the bathroom. She watched amazed as I placed a delighted Smiley directly on the toilet.

This clearly made an impression because her home copy had this sentence in it today:

1 x BM in the toilet

I can't tell you how delighted I was to read that, and I'm just hoping that they keep putting her on the toilet.

Finally on Friday someone very close to me got the good news that the lesion that had been removed from her back in a hurry was completely benign, Phew!

I'm hoping next week will be a bit quieter, though that means more cleaning...

Not a sponsored post