A Happy Christmas, a New Year and more blogging

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.

17 comments 2011, 2012, blogging, Budget 2012, children with severe disabilities, Christmas, grief, meltdowns, my dad, significant birthdays

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Smiley and the iPad : Our Favourite Apps

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

14 comments Apps, cerebral palsy, Grace App, iPad, learning difficulties

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Buying Shoes

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..

11 comments anxiety, Aspergers, December 23rd, laces, shoes, shopping

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Last Christmas

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...

10 comments Aspergers, cerebral palsy, children, feeling alone, grief, last Christmas, my dad, smiles, snow

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How to make the perfect Christmas Dinner

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...

18 comments Christmas, Christmas dinner, traditions, trifle

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Help twitter help premmie babies #Twitterxmassingle

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

4 comments #Twitterxmassingle, charity singles, extreme preemies, premature babies, tweeps

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A Guest Post from Smiley - The Versatile Blogger

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?

10 comments cerebral palsy, having fun, inclusion, Versatile Blogger

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Reasons to be Cheerful #R2BC

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.

12 comments anxiety, Aspie boy following me around, children with disabilities, Christmas, people power

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

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?

20 comments Budget 2012, disability living allowance, DLA, teenagers, unfair cuts

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Rebuilding

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...

15 comments appointments, children, Christmas, vertigo

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Do teachers provide free child care?

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.

14 comments children, education, free child care, teachers, working mothers

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