Wordless Wednesday: Smiley's wonderful school

Another week, another crisis, so I decided to do a Wordless Wednesday with some pictures from Smiley's wonderful school. These are from last week:










my old bean bag body

I think I suggested earlier this week that perhaps my bloggy niche was kids and special needs, well I'm afraid I can't resist writing about my scary visit to a chiropractor.

You may have noticed that I have a bit of an obsession with my back. It's like an old banger that keeps developing little niggles, and now and again it nearly breaks down altogether. So I do lots of exercise to keep it strong, and call in the back equivalent of the AA - my therapist - to fix it when things get serious. Well last week for the first time ever he said he couldn't fix it, even after some fairly strenuous back manipulation. Well more specifically he couldn't put back the vertebrae that is trapping the nerve that is causing the pins and needles in my fingers. And I recommend that you never google pins and needles: the wonderful web will tell you that you have MS, cancer or a stroke, or maybe all three ARGGGH.
So he referred me to a chiropractor. Now I've never been to one before, and I was a bit nervous, especially when my therapist hinted that I was in for some pretty intense treatment!

So I arrived at this lovely clinic, that I actually know quite well, and was brought in to see Mr Chiropractor. And he was very serious. We went through a long list of questions and then I had to lie down on this strange looking contraption that was straight out of a James Bond movie set. Getting more nervous by the minute, I lay - face down - and fully expected straps to drop down from the ceiling and pin me in place. Any second a scary laser would materialise and head straight for my face and a fluffy white cat would saunter round the corner of the chair. I've got used to large needles and embarrassing examinations, but this took healthcare to a whole new level. Why did I have to go through this fully conscious?

If Mr C hadn't seemed so professional and knowledgeable, I swear I would have walked out rather than lie on that table.
He explained that there were trap doors in it to enable him to move the vertebrae in my back that were out of place. At least that's what I think he said.


Worse still he banned me from exercise - apparently to allow my body to heal. Already after two days I feel like an old bean bag: all saggy and baggy.




THIS HAD BETTER BE WORTH IT!

And
I have to go back on Monday....



The 'why am I doing this' virus and some random stuff from Wales

You might be thinking "what is she on about?" but I promise you there is a link between these two themes. There does seem to be a virus infecting a number of blogs recently which causes their authors to wonder why they blog at all, or in my case to wonder am I crap and does anybody really like what I write. Unlike my blogging pals, I know that I can't do heartwarming posts, barbed humour, serious campaigning or entertainingly insightful analysis....takes very deep breath....so where is my blogging niche? Petunia said recently that she'd "struggled lately to blog, really struggled trying to think of something to write about and the realisation hit me that this was because I had started to write for the reader, rather than for myself." I think I have been guilty of the same thing. But at the same time I don't want to bore the pants of all the people who've made the effort to follow this blog. I sort of get the impression that you like my stories about the kids and sometimes mad tales about the stuff that I have done. So I will carry on with those.

But there are two other things, I was having an on-line conversation with Hammie the other day about the lack of blogs, in Ireland anyway, covering special needs other than autism. And I suddenly realised that really I ought to do something about that, so there will be more posts with stories and information on disability and special needs....see below!!! And the other thing is that because I am single I have no-one to tell stuff to**. Well Angel gets told stuff sometimes, but she tends to just look at me with that amused teen face and shake her head. She doesn't need to even say "Oh Mum!" anymore... So I'm telling the world instead.

** This is a very small price to pay for the freedom I have now.

Anyway back to the holiday. I just have to pass on these finds from across the Irish Sea:

Alcoholic Ginger Beer. Yes really!! Now I don't think many people in Ireland like Ginger Beer as it is not even sold in supermarkets and RH used to have to make special trips to get it when I was pregnant and the only thing that stopped me from throwing up. But I have always liked it and even used to brew it in a little Still in the larder when I was growing up, cos of course all real ginger beer has a very small amount of alcohol in it. But this new stuff that my wonderful SIL introduced me to is 4% proof and absolutely delicious! Just as well I'm not planning to get pregnant again.... Feel should not reveal manufacturer here in case anyone thinks I got free samples. Well I did.....but from SIL.

I nearly called this post 'show me the way to Ruthin'. Cos one of the best days of the holiday was when I left CD with his Grandad and me, Angel and Smiley headed to the sleepy Welsh town of Ruthin over the Horseshoe Pass, an absolutely spectacular drive over the mountains, not for bad weather, vertigo sufferers, old cars or anyone of a nervous disposition. I only went that way as is was recommended by AA routefinder - apparently you need to tell the site you want the safest, not necessarily the most direct route lol.

So why were we there? Well I'm car-hunting again cos with the Irish motor disability scheme it makes sense to change your car every two years and I came across this new place in Ruthin that deals exclusively in second-hand wheelchair accessible vehicles (WAVS). And the company has an Irish agent. Definitely worth checking out if this is something that you need or pass on the information. They had a great selection, including MPVs and the only ever converted 220bhp Zafira (ie fast!) Oh I was so tempted, but Angel said "Mum. No." So that was it lol, she's much more sensible than me sometimes.

More hunting followed, this time to find somewhere Smiley-friendly to eat. Hotels are usually a safe bet so we were delighted when we spotted the historic Castle Hotel on the main town square. It was a great choice. The bar had lovely views of the mountains, and a £5 lunch menu! The food was delicious :) Sadly we were the only customers, so that's partly why I wanted to write about it - apparently there has been an inn on this site for 800 years, and it would just be so sad if it closed down through lack of custom now.

Finally just have to give a mention to Radio One. Last time I tuned in it was all yoofs, lads and ladettes, but it seems to have had a makeover. Now it just sounds, young, vibrant and entertaining! Very impressed...


The plastic joy award

Clearly everyone feels that I am getting way too serious on my blog, and that I need to lighten up, or squirm perhaps... I did think about ignoring this, but perhaps there are sanctions for non-acceptance? Anyway under the terms of the Plastic Joy Award I have to reveal the names of some people (real, plastic, cartoon, alive or dead) that I would find attractive.

And I've been tagged twice, so I really feel that I have to accept the challenge - thanks Irish Mammy and Mammydiaries! The best part of this challenge was choosing the pictures, and the worst was rejecting some of them - this is a 'family' blog after all.


But sadly they have all had to be removed (June 2013)

So here we go with the list.....

First up is old blue eyes himself: Paul Newman


Tom Quinn from Spooks


Evan Dando from The Lemonheads - the token bad boy



Jake Gyllenhaal "swoons"


Last place nearly went to Bob the Builder, cos I do love a man who can fix things.


But I'm afraid he was pipped at the post by my current all-round fave - who's featured on this blog before: Mike Delphino. 



In theory I'm supposed to pass this on, but I know it's been doing the rounds for a while, so if you haven't been tagged and would like to have a go, feel free!



More mistakes!

Just an apology to my followers if you are getting multiple postings - I keep trying out new things and getting in a muddle :( Sorry !

Saying thank you!



I've always loved Chic Mama's Friday thanks post and was secretly thinking of trying to copy it. But now I don't have to: Chic has created her very own award. As a novice blogger I was stunned to be included with the other recipients, but am very happy to take part. The rules are that I have to write at least five reasons why I am grateful and pass it on to five others who I would like to thank.

So this week I am grateful for:

1. Blue skies and sunshine, which brighten up the worst of days.

2. Being in a tonsil-free household, so I know that our colds will not develop into anything worse.

3. The fun that I had with the friends that I met, and the understanding of the friends that I cancelled.

4. My Facebook pals who gave me sympathy, support and a bit of prodding to go and do something about CD's behaviour.

5. Smiley's smiles, and all the love and hugs from Angel and CD.

Now the difficult part: who to pass this on to, when I get help and support from so many people. So I've decided to send this award to the following bloggers who helped me this week:

Jazzygal

Hammie

Helen

Irish Mammy

Petunia

Please forgive me if you are not on this list, I can't think straight with this head cold: but at least I can blog while I 'rest' and 'take it easy'.






Let them eat scones

One of the side effects of the volcanic eruption in Iceland is that 1000s of people cannot get home and need somewhere to stay. Good news for the Irish hotel industry you might think. But this morning I heard that instead of welcoming these stranded passengers, hotels around some Irish airports are putting up their prices in response to the crisis - if this is true then Rip-off Republic is alive and well still.

I understand the laws of supply and demand, but am starting to think that they are a nonsense in situations like this. If I was stuck somewhere I didn't want to be, not able to get back home, to work, perhaps to a wedding or funeral I would be really fed-up and that would be compounded if the only places that I could find to stay wanted to fleece me for providing a room.


Quite possibly I would never want to set foot in that country again.

If I ran a hotel near the airport, I would consider giving stranded passengers a discount, perhaps serving them with a pot of tea and a plate of scones when they arrive. Anything to make them feel that someone cares about what has happened to them. Am I missing something here?


Smiley's Story Part 1: Born too soon

A few of you have asked about Smiley and it's taken me a while to get started on her story: until recently I used to physically shake when talking about what happened. So if you don't already think that I'm a true drama queen, you probably will after reading this. I will try and tone down the details, but really everything was just sooo dramatic. And I swear it's all true.

It all began in October 1996 when RH and I both had great jobs, a wonderful little girl, and another baby on the way.
We has just moved into a beautiful old redbrick house near the City Centre. It needed a a lot of TLC, but we were young, we had plenty of time, didn't we? Well, we got our answer just three days later when our whole world began to change.

I was having lunch out with a friend from the office when I began to feel that something was not quite right. Very quickly I was bundled into a taxi and packed off to the Maternity Hospital, briefcase in hand. There I was marched past the snaking lines of bottom-shuffling women, who I don't think were too impressed, and straight in to see the doctor. After a couple of tests, I was told that I was losing my waters and was likely to go into labour within 24 hours. I was 24 weeks pregnant.

I remember crying and friends visiting and then....nothing. I did not go into labour and it was like the hospital did not know what to do with me. I was parked in the prenatal ward and left to wait.
I watched other women come and go. For some everything went well and their babies were delivered safely. Other times I saw weeping families and did not dare ask why. Some women who were there when I arrived were still there when I left: some spent most of their pregnancy walking the hospital corridors. I made one very good friend who arrived on the ward during my second week there and we are still in touch today.

Meantime my hormones were in overdrive. I did weird things - I normally read uplifting books, but while waiting on the birth of this baby, I read Trainspotting, why?? For some strange reason the hospital catering staff only served tea, but there were two coffee machines. One dark morning, both were not working, and I went back to bed, pulled the curtains and refused to come out, until someone got me a mug of coffee.
I missed Angel horribly, and very quickly decided that one hour a day visiting was not enough - so I negotiated day release! I only lived a 5 minute drive from the hospital so they agreed that I could go home in the afternoons once the baby seemed to be okay. Just in case you were wondering: I was a public patient and all the care up until I went into labour was fine: I was regularly checked, I was given the most disgusting injections ever to mature the baby's lungs, and the staff were supportive and helpful.

On the second Friday there were signs that things were starting to happen and an infection was mentioned. For whatever reason, I don't remember being given any medication for this. Soon after I started to feel mild pains - and so did my friend - and she kept my sanity intact as we struggled through the weekend together. On Saturday I asked to be checked again, but was told that I was not in labour, same on Sunday, same on Monday. The SHO (Senior House Officer) checked me on Monday morning and said again that nothing was happening. Pains continued and sleep became a distant memory. By Monday night I was miserably tired and almost felt abandoned when my friend was wheeled down to the labour ward by the SHO. So some pethidine was prescribed, and it made me feel a lot calmer. I just lay and listened to music with my eyes closed - Oasis I think. Of course the staff assumed I was sleeping. But the pains continued to get stronger and about 3am I called for help. I was checked and suddenly people started running around, finally they were admitting that I was in labour. As he pushed me down to the labour ward I remember asking the SHO what my chances of a live baby were, "about 30/70", he replied. I was now 26 weeks pregnant (27 by the hospital's dates).

RH was called and I was hooked up to various monitors. Initially everything seemed to be going well, then things started to go wrong, you could see the worried faces, but as there is no agreement over what happened, all I can say is that the consultant was called in the middle of the night, no caesarean
was performed, and the SHO apologised to me for "what I put you through." Actually, physically I recovered pretty quickly and shortly after the birth I trotted off to have a shower (the benefits of no epidural).

By the time Smiley was born, there was a whole team of people in the room waiting to work on her (I'll never be embarrassed about anything ever again!) The shocking thing was the silence, there was no new born cry, my baby was just whisked away.
"Is it alive?" I asked... and it seemed a long time before I got an answer.

Part 2 Failure to Thrive is here: http://www.lookingforbluesky.com/2010/05/smileys-story-part-2-failure-to-thrive.html

Part 3 Living in the Hospital is here:
http://www.lookingforbluesky.com/2012/03/smileys-story-part-3-living-in-hospital.html


Posting hosting! Summer fun for kids with special needs

Today I'm providing a bit of free advertising. No not for my favourite shampoo or ferry company, but - again!!! - for the Rainbow Junior Arch Club. Well someone has to, and it is a very important cause. Just to introduce it again, the Rainbow Junior Arch Club is a Saturday social club for children with special needs and their families, including children with Down's Syndrome and Autism. It is based in Scoil Chiaráin in Glasnevin, Dublin 11, but families from all over north Dublin and Fingal enjoy the fun, friendship and activities on offer.

We'd love you to come and join us....

The Club helped to save my sanity when I had two littlies and an 8 year old that I needed to occupy at the weekend. It's not easy to find somewhere that provides activities for a child with special needs, and acceptance of their behaviour, as well as entertaining your NT child - well I didn't know then that CD was going to be diagnosed with Aspergers.

Just to whet your appetite, here's some of the upcoming activities:

Saturday 17th April: A musical jamboree with Jacqui's School of Music.

Friday 23rd - Sunday 25th April: The Big Arklow Adventure - a subsidised weekend away at the Arklow Bay Hotel.

Saturday 8th May: Circle Time with Nancy.

Saturday 15th May: Rhythm and Movement with Elaine.

Saturday 22nd May: Stretch and Grow with Anna.

Saturday 29th May: Summer Fun at the Annual Ice-cream Party in Kinsealy with Gymboree, a bouncy castle, pet's corner, a disco and games... Some pictures from last year:







If you live outside Dublin, check out the Arch Clubs Federation website for details of your nearest club.

Seven Up!

The wonderful Chic Mama has sent the Beautiful Seven Award my way. Doesn't it look well on my blog?

The rules of this award are to write seven things about myself, and pass onto seven other blogs. There's no way I can match Chic's stylish list, but a few random things did pop into my head. So here they are:



1. My favourite city in the world is La Rochelle: sea, scenery, shopping and French food!


2. Most people grow to enjoy classical music as they grow up - being contrary, I did the reverse, loving classical music as a child and regressing into a wannabe indie chick as I got older. Trouble is, Smiley is in charge of the CD player, so we are usually humming along to girlie pop!

3. I can wiggle my nose.

4. I'm a complete hypochondriac - with good reason, I swear! I was a pre-vaccination child and got all the childhood illnesses, and so many ailments, lumps, bumps and viruses as an adult that my ex claimed he was marrying me "in sickness and in sickness"!

5. I can't eat brandy butter or drink Benedictine. I once gorged on a whole tub of brandy butter......


6. When I was 8, my class teacher asked us all what we wanted to be when we grew up. I said I wanted to be Prime Minister. Yes, I was a precocious child.

7. I love dancing, but according to Wii Fit my rhythm isn't great, so I guess I've been fooling myself all these years, oops.

Well that's me about done. Hope some of these 7 made you smile.

Travelling hopefully with Aspergers

Being completely pig-headed I ignored my bad back and gale forecasts on the Irish Sea to continue with my plans to bring the kids to Wales for a few days to see my family.

Did not enjoy the journey (sorry Irish Ferries - weather not their fault obviously), thanks to yes, a bumpy boat ride, no Joy Rides (the best sea sickness tablets bar none in case you think I paid a sneaky visit to the local head shop) and an hour spent in roadworks 'congestion' - last time that happened I went back on the smokes. I only got us all to my Dad's house in one piece thanks to Red Bull, loud music and blasts of cold air to keep me awake and focused. My Dad has a downstairs bedroom for Smiley and as the family can help me - my brothers live nearby - my back has been getting a bit of a rest.Been reading the other posts on Facebook and it seems that school holidays and Aspergers don't mix well. Take the child away from home and the behaviour gets worse... Here's a few quotes from CD:

"I'm way tooooo sick!"

- on not eating or drinking on the boat or after; he knows how much that worries me.

"I hate my sister. She has to move out, I cannot live in the same house as her anymore!"

- random reaction to going to the supermarket. Said very loudly with passion over and over till I took him outside and said we would stay there until he stopped."This is the worst Wifi ever."

- on trying to watch Youtube at Grandad's house.

"
We're going back to Dublin tomorrow if you can't make the Wii work!"

- the correct AV sockets were cleverly hidden behind a panel on Grandad's telly - he'd never needed them before...

Ooh and in case you're new here, CD is 8 years old, not 2.

Note: no PR freebies influenced this post - I'm just mentioning stuff I like. Not that I'd necessarily say no to freebies....

Facing facts - lifting a 13 year-old WILL damage your back

This post is about Smiley and how her physical disabilities are affecting the life of this family. Just in case you've dropped by for the very first time, you need to know that Smiley is a pretty, happy, bright 13 year old who likes music and shopping and just happens to be severely physically and mentally handicapped.

This is also about me, and the threat to my back if I don't take action TODAY to stop carrying her up and down the stairs.


You see you can lie to yourself for years. Tell yourself that you're doing fine. Other people will say she's not that heavy - I mean she only weighs about 6 stone. And a couple of years ago when she was lighter I could be picking her up 20 times a day. That's what does the damage - it's the cumulative effect, you make things a little bit worse each time.


I got my first fright about 2 years ago, when I damaged my back very badly from lifting Smiley in and out of the car. So I went out and bought the Smileymobile, this great big enormous 'car' that I can push her wheelchair onto, and it also takes her walker, hoist, ramps, 3 passengers and me! It's about as exciting and sexy as a Transit Van, but means that Smiley can once again come out and about with me everywhere - which she loves - even a trip to Tesco is an opportunity for fun, learning and meeting new people.


Since then, I have had more back problems, but I keep getting patched up and carrying on. Then this week I spent a lovely few days in Wexford and damaged my back again. Friday morning I stretched everything thoroughly and it seemed okay. But on Saturday it was worse, and by Sunday morning I could hardly get myself down the stairs. Once again my friends came to the rescue, opened up their clinic and gave me an emergency treatment. We had a long talk about what was wrong and what I should do about it. Basically I was warned that I was sustaining crush injuries through all the carrying, and that it had to stop or my spine would be permanently affected. That could mean that I would no longer be able to care for my daughter. So tomorrow, Smiley will be moving downstairs (into the dining room) until I get my housing situation sorted out.


So please, if you are reading this and a carer who has to regularly lift a child or adult, take care. Don't just soldier on hoping for the best, listen to your body and if you start to feel under strain, get help and make changes.....before it's too late.

Ooh and next time I really will try and blog about something a bit more amusing!



HAPPY EASTER :D





Wish my Easter Eggs looked like this!


Have a wonderful day.


Jumping into rockpools

The battle to live a normal life with special needs goes on. This week's target: holidays. I refuse to accept that this family should live a lesser life, just because we're a bit different. When I could still pick Smiley up and CD's meltdowns could be explained as toddler tantrums, family holidays were, well family holidays, cooking, cleaning and changing in a different place but with hopefully better weather!

Now it's a bit more complicated. Thanks to the Autism Facebook Group I feel that I will be able to cope with anything that Aspergers throws at me, but with Smiley I'm on my own: when I was pregnant, every second woman seemed to have a bump, and I expected to see dozens of teenagers in wheelchairs once Smiley got to that stage - but it hasn't happened. Sometimes I wonder is it worth the effort as I haul the hoist and the giant nappies out to the car, but I've just given it another go: it's a gamble - a bit like jumping in rockpools, you never know what will happen.


So we went to Wexford for three days. The sun shone and the skies were blue - well some of the time - and we spent a lovely afternoon with Petunia and Munchkin, CD saw his Dad and someone else cooked for me: thanks to Sean Ogs and the Riverbank Hotel for making us feel special in a good way. Smiley was happy, CD seemed happy but kept saying he'd rather be in Dublin, and Angel was very supportive and put a brave face on things despite no Top Shop, no pals and no broadband.

As for me? Well I feel rejuvenated and a huge sense of achievement despite the cost to my purse and my back - yep, a bit of damage again. And yesterday, I got the chance to go for a run on the beach, and it was all worthwhile for that brief escape.

Yes, I know that I have to accept the differences in my children, but after the Wexford trip I once again feel determined that I will not accept that our lives have to be different: we'll just keep jumping into rockpools and hoping for the best.