A week of little breakthroughs

It's been a week of little breakthroughs chez Blue Sky, and I thought I'd share them: here in Ireland we need all the good news we can get right now.  They also fit in perfectly with Sunday Snippets, a great idea from Marylin who has a lovely blog over at Softthistle.

Love was not a word that CD used very often, his Aspergers seemed to make him angry all the time, and there wasn't room for any warm feelings towards anyone.  That has really changed since he started his new school...I was first to hear the magic words, then his big sister Angel, and finally Smiley, but in a backhanded kind of way...

"I really love her and I want to give her a big hug, but I'm afraid that I'll catch her germs," he said on Tuesday.  It doesn't matter how many times I tell him that cerebral palsy is not catching!  Hopefully when he's older he'll 'get' it.

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I love CD's new teacher, she's always thinking of creative ways to solve problems.  This week we needed to find a new way to persuade him to go to Maths.  He is supposed to join the mainstream ('big') class for this, but doesn't like to leave Outreach, and was starting to get very angry when told it was time to go.  What to do?  Well since CD is mad about computers and now looks for my approval, his teacher decided to hook up Skype in the classroom.  If he starts to cause trouble, his teacher Skypes me and I get to say a few words of encouragement.  So far it's working well :D

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Smiley does not have a great diet: she only eats mashed food (unless it has chocolate in it obviously).  This usually means potatoes plus, but unfortunately since her siblings won't eat soups and stews, the 'plus' is often just ketchup, which makes me feel like a very bad mother.  I don't have time to cook two full dinners, and up to now any of the supermarket soups I've tasted have been so horrible that we've not been able to eat them.  Finally I've found one that I can happily eat and mash the rest into Smiley's dinner - thanks Cully and Sully!

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Also I've finally found somewhere to fix the Smileymobile, which has had a problem since August.  It was converted into a wheelchair accessible vehicle in the UK, so lots of places in Ireland wouldn't touch it.  Step forward parfit.ie which did a great job, but their customer service was even better.   They have a driver on their staff whose job it is (I think!) to take customers wherever they want to go to while their car is being fixed ... and collect them afterwards once the job is finished  I got to go shopping!  How's that for a lovely surprise :)

Sadly this is not a sponsored post, I'm giving all these guys publicity for free cos I like them!

11 comments Aspergers, cerebral palsy, chocolate, magic words, outreach, potatoes, school, shopping, soup, wheelchair accessible vehicles

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What not to do on TV

If you were watching a certain current affairs show on Irish TV last week you might have noticed a cross-looking woman in the front row.  That would have been me.

It wasn't intentional: I tend to keep a low profile these days.  I like to be in the backroom - planning, writing, organising - and let someone else face the world.  But sometimes I have to get out there.  So when NK from parent group PACUB was invited on the show as a speaker and  asked for someone to go along with her, I forgot about the 'No' word and volunteered.  Luckily I only had about 24 hours to organise things and babysitters and clothes and hair washing so I didn't have time to worry about it.

Actually I thought it would be quite entertaining, and so it proved.  There was a lengthy 'meet and greet' before the show, and then the speakers and their guests were ushered into the studio where I admired the dalek-like cameras - they glide around the floor and then point menacingly at you - and failed to laugh at the floor manager's weak jokes and then there was a brief run-through before the show proper began.  NK was simply amazing and won the argument, I just hope that she persuaded a few more people of the importance of child benefit. 

You might think that I would be familiar with TV studios since I have a fairly long career in PR behind me.  Not so.  Again, I used to be left behind in the office to write stuff, or I was at home minding my babies, while the young 'wans' handled the TV gigs. So this was all new to me and I was ready to make lots of mistakes.

So based on the totally limited experience of one TV show, this is what not to do....

1. Drink the coffee.  An apology was issued about the quality of the beverages, but not about the effects of too much caffeine and being stuck in a TV studio.

2. Forget to visit the ladies...or gents.  You will regret it. 

3. Wear uncomfortable clothes, because the seats are as well.

4. Stick your hand up for the entire show and expect not to annoy the audience.

5. Show your feelings, because 300,000 people will see them too!  Unless you had the foresight to get a little botox first....

Okay, so have you been on TV?  What did you think?  And what tips would you add?

6 comments child benefit, coffee, current affairs, PACUB, TV

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Ten years Toilet Training

This post should not to be read by anyone eating...and you really need an interest in toilet training as well!

Smiley is 14, and she wears nappies.  There, I've said it.  Some of you know, and some of you may have guessed, but until now I wasn't planning to write about it.  But yesterday something happened to make me change my mind.

It was never meant to be like this: when she was little no-one had any idea how she would develop, so we did all the usual baby/toddler/disabled child stuff, including toilet training.  I didn't know what to expect, but the very first time I sat her on the potty, she used it, and produced both!  And she was delighted with herself :)

Because of her poor muscle tone, she can't sit unsupported, so we bought a potty chair.

We were also given a potty for a disabled child, but it was much bigger, more awkward and not all all portable.  So it wasn't used very much.

Anyway this went on, and very quickly she settled into a pattern of using the potty 6 times a day after each drink: easy to do when she was tiny and could just be lifted on and off.  We found that once her routine was not disturbed she was both clean and dry, at least during the day.  That meant no worries on trips out, and I could even take her to a public swimming pool with her brother and sister without fear of accidents.

At first her service and school were supportive, but because they have lots of other children to care for, it wasn't always possible to stick to the schedule.  As she got bigger and heavier and still wore nappies and a hoist was needed, their efforts to continue with the toilet training withered away.

Ten years on, and I am still toilet training, and sometimes I do wonder why.  I don't know if there are any other teenagers out there with severe disabilities who are on a toilet training programme with very little prospect of complete success.  It is a chore, it's tiring and time-consuming and I have had to cut back, so she is no longer dry during the day time.  Now I just put her on the toilet three times each day.  But she is usually clean and usually regular: a wee, after breakfast; both, following a large drink when she gets in from school; and another wee just before bedtime.  And she is so proud each time: she knows that she is doing the right thing.

But sometimes it all goes wrong.  Yesterday it did and, perversely, that reminded me of why I keep doing this.  I don't know if it was something she ate or a little bug, but she was out of sorts, whinging and crying...when I took her to the toilet I found out why: she'd soiled herself and hadn't finished either.  It was not nice, and between cleaning her, her clothes and the bathroom, it took the best part of an hour to sort out.  I was the one in tears at the end.

Is this what it is like dealing with teenagers and adults who don't use a toilet?  If so, it's not for me.  Yesterday convinced me that an on-going toilet training programme is worth it, even if you never finish.  

Ten years toilet training?  Roll on the next twenty, I'm not stopping now...

19 comments accidents, cerebral palsy, potty, toilet training

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Where do you belong?

I've a confession to make: I am not Welsh.  Actually I never claimed to be.  I just say that I come from Wales, which is absolutely true.  I was brought up in a little market town close to the English border.  My school friends came from both countries, but I was very confused when my parents told me that I had actually been born in London.  It seems that we moved to Wales when I was six months old.  Did I fit in?  Well my parents spoke BBC English, but I acquired a local accent, so fitted in without a problem.  But while I love visiting Wales and my family and friends who still live there, it doesn't feel like home anymore: so much has changed that it really is a foreign country.

Like most of my school friends I left town at 18, and went to college in Manchester, becoming a 'student', as in not a Mancunian: we had our own dress code, our own clubs and our own accent. But this was just a transition, I belonged simply because I was a student.

Post College I headed for the land of Essex, a unique place in 1980s England.  And some of what they say about Essex girls is true, everyone in my memory was blond, tanned and weighed down with gold jewellery.  There's actually photos of me wearing drainpipes and white stilettos *hangs head in shame again*.  I also picked up a London accent and a group of fabby friends, both of which I still have.  But I had to escape from Essex as I couldn't stick the traffic, so we moved to Dublin.  Yes I know, the joke is on me.

I've lived here for 20 years now, but as I don't have an Irish accent, strangers still ask if I'm enjoying my holiday, and acquaintances still ask if I'm going to go 'home'.  So where is home?  Where do I belong?

Maybe I don't belong anywhere - in my mind, I'm not English, Welsh or Irish, it's like I don't have a nationality - but Dublin is now home.  It's where my kids were born and where they want to be.  Many of my friends are here, my work contacts are here.  I feel at home here. Even at the worst of times, it's still a good place to live.  And, despite the dire state of the Irish economy and the merciless bond market which I believe is now playing "chicken" with the Irish Government and stands to make billions when we finally admit defeat and go to the IMF, other people agree with me.

So, do you know where you belong?

22 comments belonging, bond markets, drainpipe jeans, Essex, playing chicken, students, the Irish economy, white stilettos

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