Friday, 27 April 2012

What were you doing 24 years ago.............?????

...........Simple enough question really!!

I know what i was doing!!
Lying in a bed in the Maternity Hospital recovering from a  C Section and wondering if i really was Mum to this little creature with all the right things in the right places and had the promise of a mop of red hair on her head!!!

Louise was late.
So they decided that i needed a bit of intervention.
Now - i am not going to bore you with all the gory details, mainly because they're not too nice and to be honest, time does make you kinda forget the bad bits and helps you focus on the good.

I got a smile when she was 24 hours old and a look that said "well - what adventures are we going to have?" That look is one i have come to know a LOT over the past 24 years - some have been great, some not and some downright scary, but we are still here.

SO - 24 years on, we started our celebrations last night. 
Pizza was ordered and eaten.
This morning, pressies and cards.
She went off to get her hair done because she ws going out tonight with the girls from work. Not because it's her birthday (tho that i'm sure would be excuse enough), but it was to welcome the girls from an associated ward at another hospital who have just transferred to the ward.

This afternoon, Charlene and Abby came over.
It was fun watching Abby toddling about, getting bolder. And watching her and Lilo try to suss each other out!!!!

 Me thinks Abby won that battle!!!

Tonight, Lou is away out - red hair (down - which may surprise some of the folk at work who are so used to seeing it tided back and up for work!)

I think they nay literally paint the town red!!!

But the best bit is, i have watched this girl grow up into a confident young woman who is good at her job and good with her brothers .

I just wonder how she's put up with her mad mother (and crazy father!!) for sooooo long!!!!

Wednesday, 25 April 2012

Back in the world of the grown ups - again!!

Yeah - me got to be mostly grown up yesterday and I really enjoyed it!

Remember the posts about Peter's Self Directed Support and Enable, who help support Peter (and the rest of us)? 

Well, they are involved in a series of conferences about Self Directed Support. There were some brief updates on the process and we had the Assistant Director of Social Care Services in Glasgow along to tell about how things are going in Glasgow.

Now - my thoughts were
1) When the heck did Social Work Department change to Social Care Services??? (while i was asleep one day maybe?!?!


2) Did this guy REALLY know i was in the building and how much danger money was he being paid, lest i chinned him about things?!?!?!

More of No 2 later!!!

The people who came along were from a wide range of groups - Enable (obviously) and Crossreach - both provide support for People with Learning disabilities. Crossreach also do support for older people. Some Mental Health groups, people who are homeless were also represented. Some individuals who are wanting to find out more about SDS were there - carers. And People who are supported by various agencies were there, so it was a fairly good mix.

There were 4 Workshops. Now, much as the other workshops i'm sure were great, i'm just going to tell you about the one that Peter and i did with Jenn, who is one of the Development Workers with Enable.

Our session was called "SDS and the Family".

We had to do it 4 times. I was conned - Jenn had told me we would do it twice!!!!!! Love you Jenn, but 4 times was (i thought!) going to be HARD going!!!!

Jenn did a lot of prep work for it - we used the filming we did last year for the Naidex exhibition and a slideshow of photos of Peter and what he'd been up to and of us as a family was shown as we talked after the film.

Luckily, the groups weren't too big. In the morning sessions, we watched the film, then Jenn asked Peter and Me some questions about our journey to SDS, how we found it, how easy/hard it was and what we might say to others thinking about going along the same road.
The groups seemed to be quite receptive and one or 2 things were asked. 
And to be honest, i was thinking of things on the hoof - like we're pretty unique , in that we are getting support for Peter, AND that Louise has worked as a SW while at Uni. It gave us a good insight into how the workers felt and how we felt we should be treating the workers who help support Peter. (they're not skivvies, they are human, often with their own stories of WHY they are doing this job).

We had a tea stop between the sessions and you could hear people talk. I passed someone who was talking about how hard things got for families when they didn't get good support - i just had to stop and agree!! (i don't usually butt into other conversations, but i just wanted the woman and the folk she was with to know they were not alone!!)

I did ask if this Deputy guy was about - but he had gone, Oh, damn - rumbled!!!
I should have said that Jenn, Ashleigh, Peter and I sat up the back with Geraldine (Scary Woman in a suit, who is actually very nice!! Woman who went to St Ambrose High in Coatbrige can be bred STRONG and take no nonsense!!!).
I joked that we could be a bit like the Hecklers from the Muppets!!!
Mmmmmm - i had to sit on my hands to stop myself from jumping up and down and shouting FFFOOOUUUUUULLLLLL!!!!!!!!!!!!!!!!!!!!! at one or two comments he made.

Lunch time came and we headed off for food. We thought our sessions had gone really well. At least - nobody had told us otherwise, or threatened to shove us oot a window and in the way of the traffic! Poor Ashleigh tho - she felt all her work had been for not much. She was talking about the process for providers and from what i heard her say, some were a bit iffy. I know that she would have prepared hard and i felt for her.

Peter loved the food mind you. He had some Pizza and some ratatouille - and went back for more pizza. He was a bit miffed there was no ice cream! But i couldn't resist the sticky toffee pudding!!!

After lunch, we chatted to a couple of people (2 lovely ladies from Crossreach) - they know the Unit Manager from the Mallard - the respite Peter went to when he was at school and one of them works at the unit which is situated in  Tollcross Park.

Then back to work!!
We decide to alter the presentation a bit. Instead of Jenn asking the questions, we asked the group is they wanted to ask anything. It was interesting what they did ask - could we bank hours? What about receipts and expenses? Why did we go for a structured approach and did Peter do anything of an evening? 
Managed to reply fairly well and i hope give some info and insight.

And, it had to happen didn't it. A parent of a child that Lou supported came over to talk to us!!! I had been careful not to mention who she had worked for or what her degree was in, or where she worked now. It took me a few seconds to actually work out which family it was. 
I had to rack my brain to make sure i hadn't said anything untoward!! I had made a comment about encouraging Peter to ask his support if they wanted a drink if he was going to get one - more out of politeness and not letting them feel left out. (i rarely leave anyone who comes into our house without the  offer of a drink of something, or if we are eating, the offer of at least a biccie or a sandwich)
Sadly, Lou wasn't even asked in this house if she would like a drink of water.

We had another tea stop before our Q&A session. Oh, man - the goodies they left out - choccie muffins. Scones with jam and cream. Bars of chocolate. Yummy!!!
I was chatting with Peter and this voice said "oh, Hello Mrs Johnston, nice to meet you"

It was the Social work/care guy!!! He;d come back!!

Maybe - for once - my reputation had by passed him.

Maybe he had heard and thought he'd come back to see if it was true!!

Maybe he was a glutton for punishment!!!!

Now - as we all know - i am not one to let a good opperchancity to pass me by!
Remember my visit to Mr Speaker's House and giving the Shadow Chancellor a message for the Chancellor and the Prime Minister.

No chances unturned or passed by could be my new motto!!!

So i asked him what the departments policy was on Social Work finding out how things are getting on ion a family where there is a Guardianship order in place.
Now - I KNOW what the office of the Public Guardian say, but i wanted to know what his Departmet would say.

Off hand, he said, he didn't know, but he would find out and get back to me.

So then i told him that the reality of living in the world i do,  is that we do not have a named Social Worker or care manager. We have been in contact and been told that we do not need one. (Duh - wrong!! They are meant to be in contact because of the above order).
I told him i was not prepared to be fobbed off with "duty worker" who doesn't know us. ANd anyway - if someone did phone us claiming to be from SW and wanting to know things about the order (and i didn't know their name) I Would most likely hang up on them. 

D'ya blame me???
These are details that i don't really want bandied about outwith the people who NEED to know!!

I also told of the trouble we have had recently, being told of meetings, then told it wasn't in the diary. 
Of being told that "someone" would phone back and no one did. 
Of being told that if we really wanted a worker, we'd have to write and request one but most likely would not be allocated.

THis iis what is going on.

Luckily - for him(!!) Theresa came to the rescue!! 

Sorry T!!! I left you to pick up the pieces of a broken man!!!! 
(she did well to patch him up again!!! )

The Q& A was good, and all too quickly the day was over!


Oh wait - i DO get to do it all again!!

Couple of weeks time in Aberdeen, then in Irvine.


Now - the day couldn't go buy without the mention of Donna and her shoes!!

Yes - Donna - wearer of the read high heels that were almost at tall as the Blackpool tower. (I kid you not - ginormouse they were!!)

Well - maybe not that big, but big enough to make my knees groan and my left ankle to scream in agony!!

This time, slightly less high, but comfy (she assured me) black pair.
Did you hear the groans and screams from me????

One thing i did say at the workshops was that Enable and our support team have become like an extended family to us. I have said this all along and i know it's not just us that they treat in this way. Some of the people they help support maybe don't have family now. They need to help support people in many different ways.

And it's not just Peter they support - it's us a family. 
I'm not saying everything is perfect - if it was, we wouldn't need the support. But it is sooooo good to have someone that you can phone if there is a problem and they can try to sort it. If finance are dragging out paying back expenses, someone can rattle them.
And sometimes. life gets a bit shitty and i end up in tears and just need to dump.

They don't get paid enough, but they keep coming back to join in our journey, so i'm glad about that.
One comment i made yesterday was that if you get paid peanuts, you get monkeys. And you may not feel supported.
But our experience has been that our support mostly feels well supported by both Enable and us. Yes- we've made changes, but that's life - change.

The last thing i'd like to say is something that my friend Linda posted on her facebook today. (yes, THAT Linda - partner is choc eating and southern comfort drinking crime.

Here's to the nights that turn into mornings.
The friends that turn into family.
The dreams that turn into reality.
And the likes that turn into loves.

Thursday, 12 April 2012

Come to the Dark Side.................

................ We have an E Reader!!!!!

There are times in my life i grab new fangled technology, beat it about the head and use it.
And there are others times that i just wanna chuck it in the bin. (like......... When i can't work out to answer my new smart phone, even 6 months after buying the damn thing!!!!)

Paul's birthday is next month and he's asked for some money towards a kindle. His girlfriend has one and he likes it.
My friend Linda (she choccie eating and southern comfort slurping fame!) has one - she hinted long and hard to her daughters to buy her one!

But i wasn't convinced.

I like books.
The smell, the touch, being able to flick thru and browse.

None of that new fangled techie stuff for me, thank you very much,

But a couple of weeks ago, i was taken to the dark side and i just had to succumb.

My name is Julie and i am the owner of a white and lilac Kobe E Reader!!!

Now that i have downloaded some books and have been reading, i actually quite like it.

I still like a proper book, but i can see times when i know i'll use the e reader.
Normally when i'm travelling, i don't like to read, but the Kobe is a nice size and shape - so i may be reading on the hoof a lot more!

I've downloaded War Horse (saw the film, so decided to get the book), and the Best exotic Marigold Hotel.
And Gervase Phinn - Tales of a Yorkshire Lad.

So i'm all set. Might download a few more - if m credit card lets me!!!!

Now, if only i could find those cookies that i've heard tell of on the dark side and i'd be really happy!!!!

Wednesday, 4 April 2012

Meanwhile back at the haven.......................

...............Yes, we've been back on Skye, eating good food and drinking more Southern Comfort than is good for me!! (just don't tell my GP - she's beginning to think i have a drink problem. Well - maybe - i don't get enough?!?!?!?!?)

We were kept busy before we went away.
Psychiatrist visit for the guardianship
Then the Mental Health Officer visited. (i'm sure his report will say that the sanest breathing thing in our family is the cat and she should be in charge of Peter's affairs and the rest of us are sacked!!!)

Questions asked, bits of paper filled in and papers now lodged at court - so just a  case of waiting for a date now, which hopefully be soon.

We are still having issues with Social Work. (like - who isn't?!?!?)
Before we went away, Lou had phoned them to find out who our care manager was. Simple enough, you would think, but simple, easy and logic are not words to be used with City of Glasgow Social Work. Man - for supposedly educated people they are really nice but dim Tims!! 
We do not have a care manager.
We will not be allocated one unless there is a crisis.

What have i been saying for years?!? Put in a bit of help early on and the crisis times may not be so bad. Bit of early intervention.

WHY is this soooooooo hard for them to understand.

We were told that we could write and request to have a manager allocated, but we prob wouldn't get one. They are too busy.
Well - i'm too busy to keep chasing them up!!!

Oh - and by the way - we have pencilled in a review meeting on the 11th of April they said!!

Well cheers for telling us lads -  nice to know another meeting has been arrange for a time and place unspecified, that we couldn't go to because they didn't TELL us where and what time!!

So Louise was tasked with phoning SW while we were away making merry.

Now - as i'm sure you have all discovered, nothing is easy Chez Johnston. Why do anything the easy way, when hard is so much more fun and adds grey hairs to my head and wrinkles to my face.
Caroline from Enable phones and asked if Peter would do a presentation with her about his support. So in between  washing, ironing and packing, i looked out some of Peter's artwork for him to take with him.

I had tried to e mail some photos to Caroline, but it kept telling me they couldn't be sent. Eventually i gave up.

Monday morning, off we went. Bus left at 10am. Just as well we had booked seats - no spare seats at all. As the bus boarded, i phoned Alisdair to ask him to let Caroline know about the photos and with some ideas of who might have some photos she could use from other presentations.
Journey up was lovely - weather was good and it promised to be a good week.

Linda had been a bit down in the dumps - one of her cats - Leo - had to be put to sleep a few weeks ago. He had been out and about round Portree (probably bossing other cats about!!). He got home and really wasn't well. Linda got him to the Vet and they think some pesticide/anti freeze poisoning was to blame. Sadly, things were too far gone for the treatment to help.
We knew we were going to miss the ginga one!!

Harry - our local friendly taxi driver - was there to meet us. He jokingly asked me not to send Paul off to church the day Celtic and Rangers were playing - He knew which side Paul would pray for and reckoned HIS side needed all the prayers going!!!
Got back to Linda's - normally she tells us just to go straight in, but for some reason, she said she'd go in first - to make sure John couldn't get out.
Normally, John doesn't go out, so i wondered what was going on.

That was till Linda moved out of the way and in Yasmin's arms was the most adorable, cute, smoochie faced ginger and white kitten!!!!

Awww - they had decided to give this lovely puss a home. Gerry (called after some actor or other, mmm........ Gerard Butler. Never 'eard of 'im!!!!!)

We were in love!!

It was nice to catch up with Lachie again and Yasmin was looking good.
Goodies unpacked - Southern Comfort, Kimble's chocs, Dishwashing tablets!!!

I know - i'm sad. Some people's contraband is booze and drugs.

I just smuggle Finish Dishwasher tablets over the sea!!!!
Well - my excuse is that they were on special offer in Poundland!!!

The saddest bit tho - Linda was so pleased to get them!

We are indeed slip sliding raucously towards (and past!!) middle age!!!!

The next couple of days were spent eating, walking, drinking, talking........... Balm to soothe the soul. I hadn't realised how tired i was and i needed the peace.

The fun part came teatime on wednesday.
Louise phoned and told me i really should have my mobile on. (my excuse is that reception is sh*t!!)
She had phoned SW.
They knew nothing of a meeting on the 11th.

(why are we not surprised here!?!?!)

And they are all soooooo busy with people transferring on to SDS that they will not have time to have a meeting till at least august, prob September, but then, who knows???  

Oh really, says Lou. Well - YOU told us of the meeting. And anyway - did they not know of the renewal of the guardianship. Surely the MHO had been in touch?? (damn - he works in the same building.)
He hadn't been pleased at the lack of input from SW. They are meant to be in contact at least twice a year because we are guardians and are looking after Peter's affairs. We could have been doing loads we weren't meant to.
They should also be monitoring the support and be available for times when it all goes downhill, but no.

Mind you - they did get a bit antsy when legal stuff was mentioned. They said they would chat to the senior and get back to us. Well - a week on, nothing.
No calls, Alisdair has tried to get in touch - no luck . 

As if i don't have enough to do without adding THEIR job onto mine.

Thankfully, Linda was on hand with Pizza, onion rings and a large drink.

Thank goodness for friends of 40 years standing - they can read us like books!!!!

So we made plans for our next visit - most likely august, where i will smuggle more booze, chocs, posh nosh for the cats and anything else that looks good!!!!

So by thursday evening, we were home. Everyone else out, only Lilo at home to welcome us and the dirty washing!!!

Peter went off friday with Caroline and i had the delights of smelly clothes to wash. Thankfully, the good weather meant i got all the stuff out and dry and ended up with a pile of ironing.

So our plans for the holidays are to relax. I might get the boys to try and tidy the bedroom (ha!! May never be found alive!!!)

We're doing some more presentations with Enable in the next few months, which will be fun, scary, good......................

But for now........................ i need some sleep and maybe a little drink!!!