Worrying about power outages as a strike is threatened

I remember going to bed by candle light in the early 70s.  As a child, it was an adventure - and didn't stop me doing most of the things I loved: reading books, climbing trees, playing with actual toys.

It would be very different now, in this time, in this house.

We are totally dependent on power for our daily lives, and yet thanks to an industrial dispute, a strike is threatened that could cause the lights to go out, and everything else too.

These are some of the issues we will face:

No central heating

Unfortunately the gas central heating has an electric controller, so it won't work, and that includes the underfloor heating in Smiley's room - which means that she will be cold.

No house phone

The UPC phone line works through the modem….which needs electric power.  It doesn't get used much, except when I have to ring so called 'low-cost' phone numbers belonging to services and utilities.  Oh wait, that means pretty much every day.

No TV or Video

Poor Smiley will not understand where all her entertainment has gone.  The rest of the family would probably cope, if it wasn't for the next problem….

No home broadband

This will be life changing.

I need broadband for my work, social life and support system.
Angel needs broadband for her College course, social life and entertainment.
Smiley loves her Vevo for music.
My son 'needs' broadband for almost all his daily activities.   If the broadband was down for a while he might agree to play his console games.  Except that most of them need power too…  I don't think that autism and power outages are going to be a good combination.

No power for the hoist or the bed

I need the hoist to lift Smiley, and I need the power to the bed to get it to the right height for dressing her, changing her, giving her medicine, doing her exercises, and other everyday activities.  Then of course there's the charger for the wheelchair that allows me to tilt it.

Apparently the advice is to bring her into hospital.  I'd love to see how that is supposed to work for everyone who is dependent on technology for disability, medical or age reasons.  Can you imagine the trolley count?

Contingency plans:

• Fill the tank - in case the petrol pumps are switched off.
• Stock up on water - as advised by Wholesome Ireland in her post of useful tips here: http://wholesomeireland.com/?p=3463
• Car chargers for everything - which means that at least the mobile phone and iPad will work.  And apparently mobile broadband may be okay.
• Candles, matches, torches and batteries: all bought.
• Briquettes or coal for the fire.
• A portable gas fire.
• Run down the stock in the freezer now and fill the press with tins.  Who knew that a freezer could hold so much fish?  I may never eat it again.
• Contact my electricity provider and ask to be put on the priority reconnection list - because I NEED that hoist to work.

Of course I also have great plans to go to bed when it's dark, get up when it's light, and take the kids out during the day.  Perhaps I could even break their broadband habit?  

But one problem I have not solved.  How to lift my daughter...

8 comments dependence, disability equipment, ESB, how to lift Smiley, power outages, strike, unions

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Emotional Overload and a tragic death in Kerry

I have been known to run away when the emotional temperature gets too high.  Sometimes crowds scare me, whether on-line or in real life, and grief and upset can be overwhelming.

I felt it when my parents died and I needed to be alone with my children, and away from others who might be grieving.  The noise of their emotion rang unbearably loudly in my head.

And again these last few days as the autism community in Ireland lost a woman and mother in tragic circumstances, a woman whom I did not know, but who was a tireless inspiration to those who did know her, again I have backed away.  It's not that I don't care.  I am horribly upset for her, for her family and for her many friends, horrified by some of the media coverage, and moved by the compassion of all those who have commented.  But the mass grief is too much for me.  My Facebook page is a sea of blue flowers in tribute to her, and I am staying away.  But I will plant a seed here, just something small.

All I can hope for is that something good will come from this.  Her memory deserves that at least. RIP xx

Leave a Comment apologies, autism, emotional overload, Sue Sheehy

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Have you ever bought a Christmas single?

For most of the year I'm dodging charity chuggers, smiling politely and closing the doors on cold callers, and tossing random requests in the recycling bin.  I don't think I'm mean, but I like to choose which charity to support, which is hard to do when someone is waving a tin under your nose!  I'd rather sponsor a friend who is running a marathon, or help a family in need, or support a disaster fund.  Christmas is a bit different, I'm choosing and buying presents for friends and family who mostly have plenty already, so it seems only right to give something to those who don't.  So I'll buy some charity cards...this year from Irish Autism Action, the charity that supports my son, and the Jack and Jill Foundation -- an organisation that provides nursing care for very sick small children, including Smiley when she was little.  I will also make a donation to the Society of St. Vincent de Paul, that helps people living in poverty in Ireland.

And this year I will be buying a charity single.  Don't stop reading!  I know what you're thinking: charity singles really don't have a great track 'record', do they?  But this one is a bit different, it's been made by a group of really cool people including my musician friend Mikey Cooling, and it's in aid of The Big Issue Foundation.

So why do this?  Mikey explains:

"I'm so frustrated with the way society is becoming segmented with vast droves of young people being locked out of the property market and any form of secure housing. It is so easy for people to find themselves homeless and current policy is just destined to make this worse. I admire the work the Big Issue Foundation are doing to help the homeless and increase awareness of this massive problem. Basic housing and security is a human essential and to neglect this as a society is unacceptable. The message of the song 'A Good Old Fashioned Christmas' is about setting aside materialism and indulgence and offering friendship and compassion instead."

More about it here: http://skyhookstudios.com/all-about-the-single.html

Go on, check it out....



I've just bought it.  Now why don't you?

And if you didn't watch the video, here's the link to buy the song: https://itunes.apple.com/gb/album/good-old-fashioned-christmas/id735947675

Help him, and others like him.  It's easy!

Disclosure: I received no payment or inducement of any kind to publish this post

16 comments A Good Old Fashioned Christmas, charity, charity singles, Skyhook Studios

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Reasons to be Cheerful 14.11.13

The Christmas Party

I was feeling a bit meh about the Christmas party this weekend.  Due to family reasons I will have to leave early and do the driving, so not much chance to let my hair down!  I wasn't even going to bother dressing up.  But then on Sunday afternoon, Smiley needed a little outing,  so I decided to take her to one of her favourite places: Henry Street in Dublin, for a little light shopping you understand.   We wandered in and out of the shops, she was loving all the Christmas lights and the busy shoppers.  And then I saw it.  THE dress.  Have you ever designed a dress in your head, the perfect dress for you?  I have, and I saw it, in my size too and the price was for half nothing….  So despite having to brave the possibility of getting stuck in the lift, and then queuing for the only disabled fitting room, I tried it on.  A midnight blue velvet column dress, with 3/4 length sleeves and a keyhole back.   How long will I be able to get away with wearing clothes like this?  Who knows, but I'm not willing to give up and start wearing Granny gear just yet.  So I bought it, and just thinking about it puts a smile on my face!

Giving up the Green

I really want to be green, but they make it soooo hard.  At first I was delighted with the idea of long life light bulbs that would save money and the  environment.  Until I realised that they don't last, they ideally need specialist disposal as they have mercury in them, and I could see very little when I switched them on!  This week there was a light bulb moment when my bin collectors changed the schedule resulting in the rubbish bin being collected twice in two weeks.  So my recycling bin was full. So I stopped recycling - well apart from paper, cardboard and things that just need a quick rinse.  And a  huge weight has been lifted.  The joy of being able to toss things in the bin again without having to scrub them first.  I just don't have the time any more…..

My new BIG Mug

I have a thing about big mugs. And I'm talking about the ones you drink coffee from.  If you're a regular visitor here, you'll know just how important my coffee is to me!  So I was devastated when my old favourite mug finally sprung a leak - it was already chipped all the way around the rim.  Then a lovely friend of mine returned from a shopping trip to the States with this replacement.

My new one is on the right -- the other one is just for comparison...

Being Right

"You're right, Mum,"

This was said to me by one of my children yesterday.  Now that is definitely something to celebrate, especially as it was the answer to a maths question!



About Reasons to be Cheerful

I thought it would be just me being cheerful this week as the host of Reasons to be Cheerful, as Michelle from Mummy from the Heart takes a well-earned break.  But this linky is really important to those of us who take part, so I was delighted to discover that Becky from Lakes Single Mum is ensuring that it keep going through November at least.

22 comments #R2BC, reasons to be cheerful

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Stop saying that autism is wonderful!

Because not everyone thinks so, and that includes some autistic adults.

I'm annoyed this morning with both side of the autism debate.  It's been caused by another awful campaign by the US lobbing group autism speaks, that describes autism as a tragedy that destroys families and ruins lives.  I can only imagine how soul-destroying that must be for autistics to read.

I discovered this when I came across a few blog posts this morning condemning the campaign.  And the more I read, the more depressed I felt at the polarisation of the autism community.  The two sides are like political parties.  And this morning each side is totally on message.  Everything is black and white, and if you don't agree with one side, they assume you agree with the other.  The opposition to autism speaks - the neurodiversity movement - won't entertain any negative commentary about autism at all.  So every blog I read this morning just condemned autism speaks without dealing in a realistic way with any of the issues raised.  The only message they have is that autism is wonderful and the only solution they have is acceptance and love.

But I believe in shades of grey.  Every child and adult with autism is different and so is every family into which they are born.

I don't agree that love and acceptance magically solves everything.  If your child and your family are happy with anger, anxiety, depression, controlling behaviour, severe sensory issues, poo smearing, sleep deprivation, or however autism affects your child, then that's fine. But many people are not happy, I have 'spoken' to a non verbal autistic who would like a cure for autism, and regards it as a disability.  Reading about all these happy clappy autism families just makes me feel like a substandard mother and human being. 

So I'm not going to do it any more.  I'm going to unfollow on twitter, unlike on Facebook and unsubscribe to all the blogs that do this. Which is a shame, because they often have very useful advice. But for the sake of my own mental health, I have to.  I'm not perfect, and I often think that my son would be better off with a different parent, but he's stuck with me, so I need to read stuff that helps me to feel supported, not condemned.

20 comments autism, autism speaks, condemning parents, shades of grey, the neurodiversity movement

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Reasons to be Cheerful 7.11.13

Today it's all about the boy.  You know, the one with aspergers syndrome, or autism if you prefer.

Family Visit

He so enjoyed the visit from my brother and nephew over the mid term break.  There was flat-pack furniture-making, monopoly-playing and bike riding in the park.  It was great to see!

Exercise

He agreed with them that he really needs to take more exercise, and that resulted in him walking all the way home from school on Monday and joining in with the basketball game in PE on Tuesday - he knows the rules and is reasonably competent player as it was one of many sports he tried when he was younger.

Smiley

He explained how much he loves his little sister - as he calls Smiley - even though he is afraid of catching her 'germs' and insists that I wash my hands every time I have done something with her.  It sounded very genuine, and was lovely to hear.

His friends

"You're dismissed!" said my son after I'd made sure he was safely strapped in to his seat on the bus.  It hurts when he says things like that, and I told him so.  " It was a joke," he said.  But then I received support from an unexpected quarter, his friends on the bus!  "Don't be so rude to your Mum",  they said.  He seemed surprised, and fingers crossed he might listen to his friends, where he won't listen to me.  Typical teenager, I think!

Readers and Commenters

Every time I unburden myself on here I receive loads of support.  And it all helps.  But I got this very special comment from an autistic adult who blogs at Unstrange Mind.  I've made a picture out of it, as I'm finding that it is giving me so much hope on difficult mornings like this one:

Thanks once again to Mummy from the Heart for hosting this, it really helps me to take part when I can or need to.  Check out more posts here:

22 comments #R2BC, Aspergers, autism, hope, reasons to be cheerful

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I'm not a lazy, ignorant carer, Katie Price

3.30 am - I hear Smiley on the 'baby' monitor.  Slowly I drag myself down the stairs to find out what she needs - at least she only called me once tonight.

5.30 am  - The alarm makes me jump.  What was I dreaming about again?  Time to switch on the heating and water, drink some coffee and check overnight Facebook and Twitter.

6 am - Iron, shower, get dressed, tidy up.

6.45 am - Home help arrives.  We get Smiley changed, washed, dressed and breakfasted.  I run up and down the stairs trying to get my son up.  Clothes are ironed, bags packed and my son gets on the bus at 7.45 am and Smiley shortly after.

8 am - Breakfast.  Start work and since I work on Facebook, that means I do get distracted from time to time…

10.30 am - Off out to the post office, chemist and supermarket (again), pick up printer cartridges and equipment for Smiley.

12.30 pm - The let's- not-waste the pumpkin campaign starts with me making soup for lunch, chatting with Angel, and then burning the bottom of the pan during a long phone call - eek.  Empty and fill dishwasher, washing machine and dryer.

1.30 pm - More work.

2 pm - House admin, sorting out taxes, passports, car insurance, paying bills and researching private occupational therapy for my son, as there is no sign of the State services offering him any.

3.15 pm - Smiley arrives home.  She needs lots of attention and drinks, I check her home-school copy.  She played a foot piano today.  Memo to self: find out what that is!

3.30 pm - Occupational therapist arrives again with yet another sales rep.  He's been here before too… We're still trying to find a new toileting sling that will enable me to easily and safely hoist my special girl onto the toilet.  When you're all grown up, but you're an unusual shape and a wobbly too, finding suitable equipment is a challenge.

4.00 pm - Time for toileting with the old sling.  Afterwards she's so delighted with her achievement.  That's why I keep doing it…

4.30 pm - A little bit of play time.

4.45 pm - Coat on, hoist her into her buggy, add scarf, blanket, hat - it's cold out today.  Lock house.

5.00 pm - Walk to son's school to collect him from homework club - he says he wants to get more exercise, but our arrival on foot will be a surprise for him.  Luckily his first day back after mid-term went well and once I offer to buy him a burger for his dinner, he is not concerned about the 1 1/2 mile walk home.  We both enjoy the chance to chat.

7.00 pm - Arrive home.  Smiley and I each have a smoothie for dinner.  Chat with eldest daughter.

8.00 pm - More toileting.  Getting Smiley ready for bed, including setting up the sleep system that should stop her physical difficulties getting any worse.

8.30 pm - Write a quick blog post.

9.00 pm - Spend time with my son.  Work.  His bedtime routine.

10.30 pm - Finish cleaning kitchen.

11 pm - Bed.

Tomorrow I will be doing it all again.  So tell me Katie Price, am I really lazy and ignorant?

I wrote this at the request of Hayley Goleniowska who blogs at Downs Side Up in response to an interview on Radio 5 live during which Katie Price described ordinary carers as lazy and ignorant.

28 comments it's not true, Katie Price, lazy ignorant carers

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