Monday, 31 January 2011

Moving On

This weekend, I finally took down the magnetic board that has been in the hall since I moved into this house 8 years ago. This board had pictures of Jack doing different things like eating, drinking, bathing, going out in the garden and I used to use them to help him make choices.  He used to be really good at it too.

Often he would get frustrated because if he wanted to go outside, he only had to walk through the kitchen to the back door and persistently turn the door handle to get my attention, so he didn't see how he had to bother with the cards.

this was the board

My mum and dad were babysitting one Sunday when Jack was about 5.  Jack had soiled his nappy so my dad took him through to the hall and gave him the choice of two cards, one being the card for nappy.  Jack was so not impressed and he kept looking at my dad as if to say "you know what I need!" but my dad kept persisting and asking him what it was he wanted.  Jack started getting a bit frustrated and started making angry noises much to my dad's amusement.  This stand-off went on for about 10 minutes until finally Jack lost his temper, grabbed the card and kicked my dad.  My poor dad was torn between nursing his leg and being chuffed that Jack had picked the right card!
Jack pushing his own wheelchair

Jack used to eat and drink all day so I was constantly forcing him to choose.  He thought that taking his cup and shaking it in front of my face was a good enough indication that he wanted a drink and didn't understand why I didn't agree with his way of thinking.  He ate anything you would put in front of him. He just loved his food.  He particularly loved Doritos.
His epilepsy safety hat and look no hands!

One lunchtime, I served up a salad for both kids, one of Jack's favourites and I put a couple of Doritos on Holly's plate and Hula Hoops on Jack's.  I sat them both at the table and for the first few minutes, all was well. Then I noticed that Jack wasn't eating and was looking at his plate, then Holly's and back at his plate again. Then he started to really cry and I was like wtf????  He was inconsolable and got real stroppy so I put him out into the hall to cool off and he stamped his feet and threw himself on the ground!

I looked at Holly's plate and then Jack's and within seconds I realised that he was stropping cos she had Doritos and he didn't!  So I took away the Hula Hoops and replaced them with Doritos, sat him back at the table and all was quiet as he ate his crisps through his sobs!!  Very funny.

thinking about getting up to mischief

Jack loved to be outside.  The best thing about my garden is that it is totally enclosed so I could leave him there for a few minutes while I got him a drink or made a cup of tea.  He had a climbing frame which he loved and I taught him how to go up and down the chute safely, climb the rope ladder and how to get down from the other side which had no steps, He was so clever.  He used to put his foot out as if he was just going to step off into fresh air but he was just testing to see if there was anything to step on and when he realised there wasn't he would sit down and then just slide off.  He gave the physiotherapist a heart attack the first time she saw him do this but she couldn't get over just how much I had been able to teach him and just how much he could learn.

about to climb onto the sofa

He was like Houdini, you just couldn't keep him in.  If a door was left open, he would be out that door so quick but as he had no sense of danger it was very dangerous as he could easily get run over.  My friend Suzi, came to visit us the year we moved into the house with her new baby Joseph.  I was in the shower when they arrived so Holly let them in. Unfortunately she didn't lock the door after her and when I came down the stairs, the door was wide open and I felt my heart sink to my feet.  I quickly asked Holly where Jack was and she said she didn't know so I had to run out in the street looking for him and there he was running up and down the middle of the road!!!  I got such a fright I can tell you and he was blissfully unaware and wondering what the fuss is all about.

that dog is talking!

He loved cuddles even then and he was often sitting on my knee with his hand down my top! Oh did I tell you that he was a bit of a boobs man?  It was quite embarrassing at times cos often he didn't just stick his hand down there, he would pull my top down too!  He was turning his mum into a flasher!

I miss that child so much but his spirit is still here.  I can tell when he looks at me that he is still the child he was but that his body is broken and he can't make it do the things he once could.  His smile lights up my day, his hugs are the most precious I've ever experienced and his rare laughter is music to my ears.  I console myself that at least he had that time where he was able to do these things and that I was never afraid to allow him to reach for the stars even though while doing so he could seriously hurt himself.

So I don't feel sad about taking down this board because I have already grieved the loss of those skills.  Instead I am constantly trying to find other ways to communicate with my gorgeous boy but mostly I just enjoy my precious hugs and the cheeky moments when he feels up my bum in the morning, while I am getting him dressed!

He's obviously a bum man too :)

Sunday, 30 January 2011

How the hell did that happen?

This week has passed in a blur and so much has happened, it's been crazy and the culmination of all that craziness is that my friend and I have set up a support group for parents/guardians of children with Special Needs in our area.

It's not the first time I have been asked about starting something like this but before no one else was willing to start it with me.  This time my friend, Louise, suggested it and I said I would help but didn't want all of the responsibility.  So we've taken the first steps and I will let you know how it goes.

Coming back from my meeting on Friday with Louise, I came around the back of my car and slipped on a bit of ice and went crashing down on my knee.  Oh the pain!!!!!!!!!!!!!!  I quickly looked around to see if anyone had noticed but luckily there was no one around to witness my painful hop into the car.

I was expecting to wake up the next morning with a huge bruise and major pain on my knee but instead my head hurt. WTF?  So I spent all day, in-between my occasional groans and winces racking my brains as to how my head could possibly be sore when I didn't hurt it when I fell.

I don't know if it's an age thing or what but I often come across bruises or aches on my body and don't have a clue how I got them.  It causes an endless amount of amusement with Holly and my friends.  It could be that my brain is just overloaded and therefore it just files any useless information into file no 13 (aka the bin!) and then I spend ages rummaging in said part of my brain looking for clues.

Last night my niece and her boyfriend came to see me, to flash off her ring as they got engaged! I salivated over her lovely platinum ring with Leo diamond and there were hugs and smiles all round. Mega excitement let me tell you and I was telling her that I had hurt my head but that I couldn't remember how.  This caused great amusement and she was telling her fiancĂ© about the time I came into her salon to get my hair coloured and she asked me "did I know that I had a hole in my head?" and I said sheepishly "well, you'll never believe this but........".

And while she was telling the story, I remembered how I had hurt my head this time!  It happened on Tuesday when I had Jack at the Dental Hygienist.  I was sitting on a chair that was up against the wall and we were having a bit of a laugh about something and I threw my head back and laughed and whacked my head off of one of those hand sanitisers.  I mean, who the hell puts one of those right where someone's head would be?  But you'd think once I had banged my head once, it wouldn't happen again right? Wrong!  This is what I get for laughing cos the second time landed exactly on the first spot and was doubly ouch ouch ouch and I was rubbing my head but then it was back into the car and off being busy busy so I forgot until now!  Shocking really.

a lethal weapon if ever I saw one!

So I expect my knee to be really sore around Monday and if I can't remember how I did it, you guys can remind me.

Meanwhile, back to the hole in my head I previously mentioned, I take it you want to know what misfortune caused such a wound? Really, you sure now? Oh, ok, if I must but you've to promise not to laugh.

My friend Maria, was moving into her new house and she asked me to come around in the afternoon of her moving in day to get the tour.  Everything was going well, I oohed and aahed in all the right places, admired all the lovely "nooks and crannies" of her lovely old house and enjoyed some tea and cake.  When I was getting ready to leave, the removal men had made themselves scare so I assumed they were on a tea break.  Maria and her daughter, Maryann walked with me down the house steps and as I turned to wave goodbye, walking past the side of the removal van, one of the guys threw a box out of the side door and literally "stotted" me off the top of my head!


You know in cartoons when the character sees tweety birds after an injury well that was definitely what it was like for me! I staggered and nearly fell over, saw stars and felt sick and I couldn't think what the hell had hit me cos I wasn't exactly expecting flying boxes that day.  After Maria, checked that I was all right, she nearly peed herself laughing and there we were leaning against the wall, hanging on to each other crying with laughter, blood dripping down my face and her poor daughter looking on bemused.

The removal men were very apologetic after they stopped laughing too. Jeez, how kind they were, not!

So you see, I am an accident waiting to happen, I am not even safe from flying objects!  I am still suffering the pain of a sore hand 4 weeks after falling.  After spending 2 hours in A & E a week or so ago, they came to the conclusion that I had dislocated my thumb at the time and damaged the tissue around it and I just need to rest it!  Ha ha they are having a laugh right?

And speaking of laughs, Thisisme @Southhamsdarling gave me an award.  

How cool is this?  As per usual there are rules to this which are:

1) Link to the person that gave you the award
2) Pass the award onto anyone who posts about at least slightly amusing things and let them know you have done so.
3) Say 5 things about yourself that no one knows...eek!
4) Pass the rules on

So I pass this award to Holly @ the duvet monster scribbles because she makes me laugh and she is my lovely daughter :)

and also this week Tress @ Jumble Mash gave me this yummy award

and since I have been lucky enough to receive this one before, click here to see my answers.

I award this one to Geeky Little Mifit who has just started blogging and I think needs a bit of encouragement.

Now for the 5 random things as per the LOL Award.

1)  I used to have a hamster called Spike Hector Turner Mckenzie and he used to play dead quite often then after I would tell everyone he'd died, he used to be swinging from the bars of the cage when I got home!!!
2)  I used to live next door to an ex biker and he once came to the door looking scary asking if we were having a party, when I replied yes, he said well I'd better turn the music up cos he couldn't hear it.  What a scream he was.
3) My very first dog was a gift from my friends for getting through chemo and radiotherapy.  She was called Hoggle and she was the best dog ever.  She used to jump the gate to the ice cream van and collect a milky way every chance she got which was nightly and I would be given a bill at the end of the week!
4) When I was very young, we used to live in the country and I was the best at climbing trees but once I got up there I would go into panic mode and couldn't get down.
5)  Despite the tree climbing I was a girl who loved her dolls and I had loads of them.

Have a lovely rest of the weekend folks :)

Thursday, 27 January 2011

18 and rebellious!

With this week, for me, being all about highlighting the plight of carers in the UK, I thought I would tell you a wee story about me in my younger days before I entered the world of the unpaid carer.

When I was about 17, I worked as a receptionist in a hotel.  If you've seen the TV programme Faulty Towers, well the place wasn't that much different to that but it was my first job so I couldn't really complain!

I loved my job, as no two days were the same and the shift would pass in a blur!  I lived in as well, so I was often called on to help in other areas of the hotel.

This is how the hotel looks today....much improved!

Two weeks before my 18th birthday, I was in the bar with some friends (drinking diet coke I hasten to add), when one of them bought me an alcoholic drink.  There was lots of teasing in the form of "bet you're too chicken to drink it" and "go on, the boss isn't here, he'll never know!"  Being the type of person who likes to rise to a challenge I began sneakily sipping it and was nearly at the end when Ron, the boss man appeared and he had a total flaky!!!

So he banned me from the bar for the next two weeks and even worse he put me on a late shift the day of my 18th birthday!  It was a Saturday night too so I was not a happy bunny about that late shift and was feeling pretty miserable but hey "you mess with the bull, you get the horns right?".

I was about 2 hours into my shift when I guy I knew really well told me he was having a party at his that night and that I should come over after my shift.  I wasn't keen to start with but by 10pm, my birthday nearly over, I thought "why the hell not?" so when my shift finished at 11pm, I donned my glad rags and headed off with the attitude that "I would show the boss man that he hadn't spoiled my partying!".

I met my friend there and we had such a laugh.  Lots of drinks were consumed, probably about 5 or 6!  Hey that's a lot for an 18yr old and bugger they went straight to my head!  I staggered across the road, back to the hotel at around 6am, fell into the shower and came down stairs and somehow as soon as the water hit me I became totally incoherent and the Night Porter couldn't understand a word I said.  I was sure my tongue had grown two sizes too big all of a sudden!

Quickly he set about filling me full of black coffee. Mmmmm I wonder if that is why I take it this way these days? After about 14 cups of black coffee which is great for a hangover I hasten to add and 4 slices of toast he reckoned I was good to go!  By then I was in agreement cos I felt almost human.

Sundays were pretty slow cos we didn't have a lot of people in and the bar didn't open til 12.30 so I had a job keeping myself from falling asleep.  When my Boss came down after checking with me that there was no immediate problems he then headed off to empty all the games machines ready for me to count the money.

My co-ordination was still in "pissed" mode which would have been ok if he had left me to count all the change myself which was his usual but no that day, of all days, he decided to help me.  I was going ever so slow so he decided in his infinite wisdom that he would count the coins and put them into piles of pounds and I would bag them.  Sounds like a plan right?  Eh no, cos every time I reached out for a pile of coins I would either miss them or knock them over!  After this happening for the umpteenth time, my boss was getting a tad bad tempered and asked "was I drunk?".  To which I indignantly replied "no, I am not!!!".  Are you impressed that I managed to say this at all, never mind with a straight face too? (Now you know where Holly gets her acting skills from, NOT!!)

His eyes narrowed and he took a real hard look at my face, taking in my bleary eyes and said "you'd better not be!".  Shortly after he left cos he was getting fed up of helping someone who kept undoing his good work!
Thank god cos I was convinced he was gonna suss me out.

Around about 2.30pm, with only an hour of my shift to go, I was sitting at my desk, nodding off when suddenly there was an almighty bang! My head shot up and I leapt outta my seat only to see one of the chefs, Phyllis, standing there, banging her hand on the counter.  She fell about laughing and I had to check my pants cos really, I nearly shit myself! My eyes were out on stalks for the next hour, terrified that I would fall asleep again.

The shift finally ended and I crawled upstairs to my bed.  Suffice to say I never went to work that hungover again but it did cause great hilarity among the staff and believe me I entertained them often!

Wednesday, 26 January 2011

This and That

Holly got the part!!!!  She had an audition for a part in a short play that is being shown in about 8 weeks at the Moray Film Festival.  She had the second audition last night.  There was only two female roles so it was unlikely I thought, that she would get it but she did, she got the part of Lexy in Friends and Neighbours.  We were both jumping up and down with excitement and it took her ages to calm down.

Exams start tomorrow too and the nerves and stress are starting to show and it's poor me who gets it in the neck, so there are lots of deep breaths on my part before I speak after she has "snarled" at me as I know it's not personal!

Jack is a bit listless and lethargic just now, I think he is definitely in teenager mode, requiring a lot more sleep but he did give me such a look yesterday as if to say "will you shut up woman, I'm trying to have 40 winks here!" that I couldn't help but laugh.  He might not be able to speak but he has, like his mum and sister, such an expressive face that you can't fail to know what he is feeling.

Birthday wishes today to my friend's son, Joseph who is 9 today (I think!) and to another friend's daughter, Katie, who is 11 today.  Hope you both have a lovely day and that there is lots of cake!

I got a look at the finalised plans for Jack's bathroom this week and chose the colour of the flooring and the wet wall for the shower. I went for a more masculine colour this time, since he really uses it more than Holly and I do. His bathroom had already been adapted but now he has outgrown the changes made so we have had to give it an overhaul such as ripping out the bath and putting the shower in it's place. Removing old shower and putting in a radiator twice the size of the one there as the room is really cold! Next step is finding out if I am eligible for a grant towards it so here's hoping cos I had to pay half last time, costing me a cool £6,000.  Ouch ouch ouch!  It hopefully shouldn't cost that much on this occasion as they are not knocking into other rooms this time.
an example of a shower for the disabled

I am feeling pretty exhausted right now and January seems like such a long month doesn't it but hey we are only a few days away from the end of it.  It's times like this, when I am so tired that any mention of Father of the Year is enough to make me "growl" and "snarl" like a rabid dog with major issues cos really, apart from paying for his children, he gives me no help with Jack.

He has had Jack 3 hours in the last 2 years.  After running about like a headless chicken to get Jack to his house for said 3 hours this time, last year and then picking him up after, I was really thinking it wasn't worth it.  When Jack goes to his dad, Granny Mac has to go there too as Father of the Year doesn't know how to do any of his personal care, meds, feeding etc, he just lets his mum do it all. It's not that he hasn't been shown how either.  When Jack stayed over night, Granny Mac slept in a bed next to him and got up through the night when Jack had a seizure. Also Jack's dad really doesn't know how to interact with him so Jack gets a few minutes of his time and then his eyes are automatically drawn towards the TV.  I know all this because Granny Mac and Holly have told me.

The final straw was when he brought back the hoist that I lent him and he left it lying in Jack's bathroom in two parts,.  It was so heavy that I couldn't lift it so had to wait for Holly's pals (teenage boys) to come around and they put it back together for me.

So I decided enough was enough.  I told him that he needs to make his life and his house Jack friendly by getting his own hoist and taking Jack to his house and back in a wheelchair accessible taxi.  Suffice to say, it hasn't happened and I refuse to let him come into the house just to peer at Jack for a minute or two then chat to Holly for 20 minutes.  It's his loss and he has missed out on the pure love that Jack has to give and the cheeky little smiles he bestows upon us when you least expect it!  And the thing he does with his eyebrows, raising them at me, questioning what I am doing can have me in hysterics!  But most of all he has missed out on this..............

Cuddles!! They are truly the best

They both are lovely kids and I love spending time with them.  Holly put it perfectly today when I picked her up at lunchtime as she has conned me into taking her home every Wednesday for the foreseeable future. Wtf???? Anyway, I digress, she said "I love this little arrangement we have going here cos I get to come home and spend time wif my mum and not be alone at lunch times on Wednesdays".  Laughingly, I said "oh and do you think I am loving the fact that you're messing with my day?" and she said "you love it, I know you do!".

Can't argue with that!

Tuesday, 25 January 2011

A bit of Scottish Culture

Today it is the birthday of famous Scottish Poet Robert Burns.  He wrote the poem Auld Lang Syne which many of you will probably know.  This poem was set to music and became well known as a song often sung to bring in the New Year.  

In Scotland, Auld Lang Syne is often played at weddings, at the end of the evening, funerals and graduations and at the end of many other occasions. 

everyone links crossed arms while singing

Robert Burns is the best loved Scottish poet, admired not only for his verse and great love-songs, but also for his character, his high spirits, 'kirk-defying', hard drinking and womanising! He came to fame as a poet when he was 27 years old, and his lifestyle of wine, women and song made him famous all over Scotland.
He was the son of a farmer, born in a cottage built by his father, in Alloway in Ayr. This cottage is now a museum, dedicated to Burns.

He wrote many poems such as Tam O'Shanter, Ode To A Haggis and My Love Is Like A Red Red Rose.

Burns died aged 37 of rheumatic fever which he contracted after falling asleep at the roadside (after a particularly vigorous drinking session) in pouring rain.  The last of Burns' children was actually born during his funeral service.

For the last 200 hundred years, on his birthday, Scots celebrate the famous poet with a Burn's Supper.  The Burn's Supper begins with the chairman of the Supper inviting the assembled company to welcome in the haggis which is piped in . The poem 'Ode To a Haggis' is recited and the haggis is then toasted with a glass of whisky. The evening ends with a rousing rendition of 'Auld Lang Syne'.
scottish piper

the haggis, usually served with neaps and tatties
a glass of Scotland's finest malt

I will leave you with a poem by Robert Burns
O, my luve is like a red, red rose,

That's newly sprung in June;
O, my luve is like a melodie
That's sweetly played in tune.
As fair art thou, my bonnie lass,
So deep in luve am I;
And I will luve thee still, my dear,
till a' the seas gang dry.
Adn I will luve tee still, my dear,
Till a' the seas gang dry.

Till a' the seas gang dry, my dear,
And the rocks melt wi' the sun;
And I will luve thee still, my dear,
While the sands of life shall run.
But fare thee weel, my only luve!
O, fare thee weel awhile!
And I will come agian, my luve,
Tho' 'twere ten thousand miles.
Tho' 'twere then thousand mile, my luve,
Tho' 'twere ten thousand mile,
And I will come again, my luve,
Tho 'twere ten thousand mile.

Monday, 24 January 2011

He's not often funny.........

My big brother, Stephen, popped round yesterday, needing to use my computer and pick my brains for his homework.  He is doing a Countryside Management course.  He was telling me that his girlfriend, Marti, reads my blog and had I posted the funny stories about him yet?  "Eh, no" says I "because I have been busy busy busy this last few weeks but I will, I promise!".

Now Stephen has the same sense of humour as myself and my sister Kay but you don't often see it cos he is usually quite grumpy!  He will kill me for saying that but it's true. It's very rare for him to come into my house in a good humour and Holly usually disappears upstairs, minutes after he arrives, as he shouts a lot and she isn't used to people shouting around her.

One time, she heard him coming before she saw him so she hid down the back of the sofa, thinking he wouldn't stay awhile as he usually just stands chatting by the living room door.  Not so this day.  Instead he sat down on the sofa that Holly was hiding behind and when he was offered a cup of coffee he accepted, something he rarely does.  Twenty minutes later and Holly is getting sore from being crouched in the one position so she just quietly stands up behind him and steps over the sofa and sits down next to him.  At which point my brother nearly has a heart attack, starts shouting expletives and I am helpless with laughter on the other sofa!.

It took about 5/10 minutes for him to calm down and Holly and I to stop laughing and I think he was left with the impression that Holly was a total nut job!

The next time he came around, Holly and I were in the kitchen.  I was making lunch and she was sitting on the kitchen work tops eating sweeties.  A CD by James Blunt was lying by the CD player and he picked it up and  said "awww you don't like his music do you?"  I said "well duh, I own the CD don't I?"  to which he said "I can't stand him" and he started singing "you're beautiful, you're beautiful" in a very high pitched voice (just like James Blunt I hasten to add), totally taking the piss and then he mimed shooting James Blunt and said " BANG! you're nae so beautiful now eh!".

Both Holly and I fell about laughing as it was hysterically funny but then Holly started choking and coughing and going blue!  She had choked on one of her sweets, she was laughing so hard and I had to slap her back a half dozen times to dislodge it!  I swear that man is lethal!

Another time, he came round and was on the scrounge for a lift home.  He lives in the country and his Land Rover was off the road so he had to walk.  I had only had my new car a few weeks so this was the first time that he had been in it.  I had barely driven out of the drive way when the car automatically locked the doors with a loud click.  Stephen turned to look at me and said "did your car just lock itself?" and I replied "yeah".  He said "that's just creepy that" and then started to claw at the window and started yelling "help, help, let me out!"over and over.  I was laughing so hard that tears were rolling down my face and I had to stop the car!

Once I calmed myself, he laughing said "I'm not often funny but when I am, I excel myself!" and you know what, I think he's right.

Sunday, 23 January 2011

It's gone crazy!

After being on the Radio re my role as a 24hr carer, life had to go back to normal.  My phone was busier than ever from texts on my mobile to phone calls from the the respite unit, PR man from Aberlour Childcare Trust and even from the producer of the radio show.

I had to pick Jack up from school, as he had an appointment for Craniosacral Therapy.  It takes 15 mins to drive to Forres so I turned up, on time I hasten to add which is quite rare for me, only to find that Jack is being changed.  After 10 minutes they came to get me and I thought they were ready but he'd just had a seizure and they had to change him again as his sling was wet!  As we were chatting, my mobile rang and it was a journalist from the Sunday Herald asking to chat to me about Jack and being a carer.  I told him that I only could give him 5 minutes of my time as I had to rush off to an appointment with Jack.  It was quite noisy in the unit so I headed out off into a quiet part of the school corridor.

Finally Jack was ready, half an hour after I had arrived and I was going to be about 15 minutes late for my appointment.  I tried to call Joanna, the therapist but I only had her home phone number so could only leave a message on her answering machine.    My stress levels were getting higher by the minute as I hate messing people about and sods law, there was so much traffic on the road so it took nearly 20 minutes instead of the usual 15.  Once there, getting Jack out of the car took another few minutes and finally I arrived, windswept and interesting at Health Works where Joanna was waiting patiently for me!  She wasn't in the least bit fazed by my lateness, reassuring me that "things happen" and it "can't be helped".  Suffice to say, we swapped mobile numbers after that so that we can text each other if there is a problem in the future.

We had a quick catch up and she asked "were you on the radio or am I thinking of someone else?".  I laughed and said "yes it was definitely me and now the Sunday Herald just did a quick interview with me while I was waiting for Jack!".  I was feeling particular sick at this point because when I am with my friends and family, I have no problem being the centre of attention because I am with people who know me well but putting myself and Jack in the spotlight like this was inviting a whole lot more attention than I would like and felt comfortable with.

Joanna was very gentle with Jack not pushing him too hard as he was still wiped out from the seizure but he was sneaking a peek at her quite a few times and she even managed to coax a half smile from him.  I always feel so tired while I am sitting next to Jack in these sessions!  I think it is a combination of me relaxing a little and  getting a blast of Cranio while sitting next to Jack.

Jack always sleeps really well after these sessions and his muscles are so much more relaxed.  I've been taking him to Joanna for over 2 years now and his muscles were so so tight back then compared to what they are like now, it has been a huge help. She doesn't have any equipment or gimmicks, she just uses her hands.

Holly once sat in on a session and she said that she could feel the effects of the Cranio just by being in the room.  She likened it to a wave pushing up against her and she tried to push it back but it was so strong and it gave her a headache! I on the other hand don't get anything like that at all and if I didn't see the effects of her work first hand I probably would be a bit of a sceptic.

After the session, I headed home to pick up Holly from school as she had guitar lessons and it was back to Forres again.

When I got home, there was a message from the Sunday Herald photo desk so I called them back and they wanted to arrange a photographer to take our photos.  And there was me thinking that I had escaped that delight! Have I told you how much I hate getting my photo taken??? Nearly as much as I hate being in the spotlight!
We arranged it for the next day. The photographer was a lovely guy, very genuine and professional.  He wanted to get a photo of Jack sitting on my knee but when he saw the size of Jack he thought he had perhaps rethink his plans but I said I was willing to give it a go.  We ended up taking the photo in the grounds of the school that looks onto my garden and then others in the house.  He was with us for two hours and we were all over the place and so was he.  He was snapping away from all angles and at one point was lying on his stomach.  I didn't realise how much I blinked until I was faced with a camera for two hours.

I had to be so serious in the pics too and I was really struggling with the "poker face" let me tell you as I smile a LOT considering the life I lead but I managed! I was exhausted after he had gone and I had a wee chuckle to myself thinking "thank god I am not model material cos it was really really hard work".  John (that was the photographer's name) took some lovely photos, I know cos he showed me some of them. I commented that  "it is rare for me to get photos of myself with Jack as it is usually me taking the photos" so he said that he would send me some via email.  How lovely is he??? People never cease to surprise me and blow me away with their kindness and thoughfulness.

I never expected it to be such a huge article so when my dad called this morning to say we had made front page I was expecting there to be only a small picture accompanied by writing but click here to see just how wrong I was!!!

Hopefully the article will highlight the plight of people who care and who are so so exhausted.  Oh and you can tell that I really did have my serious face on!

Friday, 21 January 2011

Riven Vincent's story and Radio Scotland

Yesterday, a parent of a young girl who has profound difficulties, posted on Mumsnet that she was crumbling under the pressure of looking after her child.  She struggles on very little respite and felt the only answer was to put her child into care!!!!!

This sparked a front page story in the Guardian newspaper and TV and Radio stations across the UK have grabbed the story and run with it.  Click on the word Guardian to read the article.

My friend Lorna and I were just discussing this.  I hadn't seen the papers or heard the news so she was filling me in and saying that hearing this story was like deja vu as it was just like having a conversation with me.  Moments later my mobile rang and it was the Manager of Jack's respite unit asking if I would be willing to talk to the charity's PR man as he was looking for parents to speak on Radio Scotland.

After she hung up, Lorna and I just looked at each other and I told her that I now felt sick! A minute or two later Tom, the PR man was calling my mobile and he gave me a heads up of what was involved and I agreed to do it.

Suffice to say that I slept even worse than usual!  The nerves were really kicking in especially as this was going to be a live chat on the show.  At 8.45, just as I was putting Jack out of the door onto the bus, Radio Scotland called.  Within 5 minutes I was chatting, live, to Kaye Adams and once we got started on the subject matter I relaxed a bit.  I had 4 A4 pages of notes in case my mind went blank but never looked at them once!!!

My line had a lot of interference and they switched to my mobile but again it was just the same which was a pity but I think I got my point across well enough. So I hope that despite the interference I was still able to be heard.

Once the conversation got started, the debate took off and there were lots of callers, emails and texts and they let me go at 9.30am to allow other people the chance to speak.  There was so much more, I wanted to say but that will have to be for another time but at the very least for the first time in a very long time, Carers have found their voice and people are finally willing to listen!  My friend Louise had her text read out too so I was so chuffed for her, as she gets even less care than me.

If you missed it you can find it on BBC iplayer, Kaye Adams show.  If you want to listen, click here and that will take you to the site.  It's the one dated today's date obviously!!

Since then, my phone has rung off the hook with people asking for my autograph saying that I came across well and thanking me for my contribution, which they really don't need to do cos I was happy to tell it like it is.

The Manager of Jack's Respite Unit has been on the phone giving me feedback and has said that people are now wanting to take this story further and that if I was willing they would involve me!  Oh WOW!!!

Also she said that she has had numerous emails saying that I put my point across eloquently!  Eloquent, what, who me??? Eh............ok.  She has told me to listen to it again but maybe another time, not ready to go there yet but you can do it for me and tell me what you think eh?

Thursday, 20 January 2011


After finishing my last post, I did my usual and posted it to Facebook so that my friends could read it.  Alas it was not to be.  Apparently Facebook have blocked it because the content is either abusive or contains spam!!!!!!!  WTF?????

I clicked on the "what to do if you disagree" link, posted the blog url and said that I disagreed, pressed submit and was told that I would receive a message from Facebook shortly.

Well their definition of shortly and mine are worlds apart cos after repeatedly checking my response whatsoever from Facebook.  So I tried again and again and again and again, each time filling in their f**king form and getting more and more frustrated!!!

Then I managed to get onto their Help page and the information given was that:

You're seeing this error message because the content that you've attempted to post on the site has already been reported as abusive by other Facebook users. You should be able to edit your account if you do not include the offending text or URLs.

If you believe there is no abusive content on the specific website you are trying to post, unfortunately, the web domain that hosts the website has already been identified as abusive. Facebook does not have control over content that is hosted by particular web domains. To request the removal of abusive web pages that may be hosted by this domain, you will have to contact the specific domain provider. 

For more information about prohibited content, please visit the Warnings section of the Help Center. 

So what the hell is that all about???  I was telling Holly and she was equally upset on my behalf and straight away she said, "it's maybe since my guest post on your blog was posted onto my Facebook page by accident!  I bet Dad read it and then read some more and didn't like what he was reading!"

It never occurred to me to think this, cos he doesn't even come up on my radar, any given time or day these days unless he is home and then he just annoys me in the way that a huge, red painful boil on your bum does! 
It says a hell of a lot that Holly would automatically connect the dots in this way and come up with that conclusion!!!  She was like "awww mum, I am so upset for you cos you have found something you love doing that's just for you and someone has come along and spoiled it.  Who would do such a thing but someone who wants to upset you?". 

So then I tried to post Holly's posts from her blogs onto her Facebook page and the same thing!! More complaints and still no bloody response  from Facebook!  What the hell?  Anyone who has read Holly's blog knows that there is nothing abusive in it WHATSOEVER!!!!

It could be a coincidence but who knows???  If anyone else posts their blog to Facebook, are you having problems too or is it just me?  And if it is just me and Holz then according to the above paragraph we have no comeback cos I don't even know what part of the post was abusive??? And why???

So now I am frustrated, confused and quite royally pissed off!

But hey there is more than one way to skin a cat and I found it!  It doesn't look as good but hey at least I can still let my friends read it without having to become followers, although if they did become followers, that would make me a very happy bunny!!!

I may be down but I am definitely not out cos you can't keep a good girl down :)

Just tried again to post this one onto Facebook and woo hoo it went through!!!!  Ha ha ha ah

Wednesday, 19 January 2011

Friends...........a girl needs them!

What would life be like without friends?  For me it would be pretty empty.  Often I think I am doing  ok until a friend calls and I am close to tears just hearing their voice because a problem shared is a problem halved.  Isn't it funny how we try really hard not to burden our friends with our worries and sorrows yet when we finally do and they have us crying and laughing through our tears, you realise just how much you needed that moment, or vice versa.

My friends are a total mixed bag but one thing they all have in common is their strength.  A woman doesn't choose to be strong, it's circumstances that make her that way.

A lot of people mistake a strong woman for being hard.  This always surprises me, big time! Just because we are not crying and curling up in a ball doesn't mean we don't feel the pain of the trauma we are going through.  

My ex husband used to call me a "hard bitch" because no matter what shit was dealt me, I just had to deal with it and keep going.  I couldn't win because if I did show emotion, he would not know how to deal with me so I often dealt with it internally.  Outwardly I would be functioning but inwardly I would be screaming.  As a friend recently put it on her blog, she is often like a duck floating on a pond: above the water all is serene but underneath she is paddling like hell!

Being called that, hurt me deeply and I never expected to hear it from a guy again until the recent crisis with Jack over Christmas and New Year.

I was having a text conversation with Friend with Perks and he was asking how I was doing after the latest ambulance dash.  I told him that I felt so worn out and needed to cry but couldn't and he text back that I should "stop being such a hard bitch" and I was totally gobsmacked, hurt and confused cos I thought he knew me! Then I did cry cos how can someone close to you, get you so wrong! I will say that it was the word "hard" that upset me not the word "bitch"! lol

The next day I took him to task about it and he explained that it wasn't really what he meant but he didn't know any other way to explain it.  Basically he didn't understand why I couldn't or even wouldn't cry and felt that I should let it all out.  Easy done if you don't lurch from one crisis to the other with little space to draw breath in between!  Then there is time and space to lick your wounds but in my case, I still have to function in between the chaos and crying is a total luxury! When I told him how it made me feel, he was equally gutted because he never meant to hurt me.

I believe him because he is a lovely guy but he just doesn't have the words sometimes to say what he really means.  I am glad we talked about it otherwise it would have festered and hurt our friendship.  I think that is the key to friends..........the ability to communicate well through the good and the bad. So if you fuck up and hurt them, you should be able to talk about it without it getting to the yelling and mud slinging stage or is that just me cos I am a coward and I don't do confrontation?  See I am all bravado me!

I am not a perfect friend in anyway but I think I am a good enough friend.  If you are my friend this is what you can expect from me................

1. When you are sad - I will help you get drunk and plot revenge against the sorry bastard who made you sad.
2. When you are blue - I will try to dislodge whatever is choking you.
3. When you smile - I will know you finally got laid.
4. When you are scared - I will rag on you about it every chance I get.
5. When you are worried - I will tell you horrible stories about how much worse it could be and to quit whining.
6. When you are confused - I will use little words.
7. When you are sick - Stay the hell away from me until you are well again. I don't want whatever you have.
8. When you fall - I will point and laugh at your clumsy ass.
This is my oath. I pledge it till the end. "Why?" You may ask. Because you are my friend.
Remember: A good friend will help you move. A really good friend will help you move a body. Let me know if I ever need to bring a shovel.

I don't know who wrote that poem but it's genius!

So there you have it, being my friend is fairly simple.  Expect me to laugh my head off before I give you sympathy unless of course what you are telling me is so not funny and then I will try to behave like a normal friend should! Remember the key word here....try!

Monday, 17 January 2011

Qualifications and fighting the good fight!

Today I went to a meeting organised by the local council and Quarriers Support Group for Carers.  I don't often go to support group meetings to be honest, as usually Jack has a hospital appointment on the day.

This time, I made a special effort cos this was a meeting to discuss the possibility of unpaid carers gaining a qualification for the work they do looking after a family member.  This is a pilot scheme and if it works then it will be rolled out across the UK and many more unpaid carers will benefit.

There are 8 carers, me included, who are interested in this new scheme but as it is a "pilot" scheme, there are only 3 places available!  I was gutted when I heard this but a little more heartened when they said that the course can be completed in 6 months or less so as soon as 1 person finishes another can be started.

The SVQ (Scottish Vocational Qualification) assessor comes to your house and watches you in your caring role doing specific tasks ie peg feeding, bathing, dressing, communication etc and marks you. There is some written work but no essays (yipee!) and the written work is based on your everyday caring role.  The best bit of all, is that the course, costing £2000 per person, is being funded by the local council so it wont cos me a damn thing.

Win win situation me thinks!  So watch this space and fingers crossed that I get picked and I can finally get recognition for something that I have been doing for 12 years, unpaid.

Mind you, if I am honest, I could think of better things for the council to spend that money on!  Which brings me to another snippet of good news I was given on Friday.

Two years ago, the special needs holiday play scheme and weekly clubs in Elgin were under threat because the local council had withdrawn a substantial amount of it's funding to the charity that ran them.  A meeting was held and parents of the children who used this scheme were given all the relevant information and two of us, myself and a friend, Moira decided to fight it.  We organised meetings with parents, local councillors, invited the local newspapers and basically highlighted the dire need for this scheme/weekly clubs and how much our children benefited from them.

As Moira was a bit more camera shy than me, it was mine and Jack's pictures that were used in all the newspapers and I was even interviewed by our local radio station - that was really nerve racking! The upshot was a meeting with councillors at Moray Council, where parents got to have their say and express their concerns.  It was decided that if the charity in question could not provide the exact same service for less than half the money, then the council would take it in-house and they would run it themselves.   I was adamant that if this was to happen, then we, the parents should be involved from the advising process right through to the set up.

We met every month for 9 months, hashing things out, often it was just myself, Moira and a council employee.   The council wanted the charity to take on the task with the reduced money and they said they couldn't but finally at the 11th hour they agreed and the deal was signed and we had our play scheme back.

Great news all round but I had spent nearly a year fighting for a play scheme that Jack was only going to be using for a few months more, as once he was 12, he was too old for it and there was nothing else for older kids. While we were involved in the advisory part of setting up the new play scheme, I had raised the issue of raising the age group and the council were keen to look into it but when the charity took it back on, they were only willing to take on the play scheme as was.  So that was that. Ya think?  Yeah right!!!

We still plugged away, nipping the heads of the play scheme managers and did get a follow up in the papers but then we got tired!  There is only so much you can do!

BUT this week I was told that the charity had applied for funding for a play scheme for age 12 and above.  Funding that will last for hopefully 5 years and the council will financially support them too!  Obviously our nipping of people's heads and constant exposure of the isolation of children with special needs has hit a nerve.

I am over the moon but I am not willing to give them a "high 5" just yet until everything is in place and it is all signed, sealed and delivered!

And Jack can finally have a social life outside of home and school cos I am pretty sure he is fed up looking at my face all day long!

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