Hang your shining star upon the highest bough................

..................I have to admit, till today, I've been a bit Bah Humbug. I couldn't seem to get into any kind of spirit, never mind the Christmas one!!!
The pressies - mostly - have been wrapped, the tree is up and the cards are up.


But still no festive wotsit!!!


Matthew has been enjoying the new job - just over 5 weeks and first pay - that did kind of help. Then he gets his days off for next week - off Christmas day and Boxing Day - so that's good. Lou is off as well, so we get to have dinner, open pressies and enjoy.
So, the spirit is slowly seeping in.


(some would say it's the southern comfort spirit seeping in - they'd be right!!!!!)




Yesterday, Peter and i went in to town. Not too bad - busy, but not the "Let's get outta here" busy. I treated him to and Alice in Wonderland ornament he'd seen. He asked if it was to be sent to Santa - i told him that he could put it out NOW - well, when we got home. He was happy.
Then to Kimble's to treat us to some nice choccies. And to Whittards for some nice coffee to feed my new found coffee addiction!!


This morning, i had to go to the bank. Coming out, i saw that some kids were on the tour bus. It was their Christmas day out and they were loving being on the top deck of this open topped bus - in the drizzle and dull skies - and just having a great time. They were looking down to the folk on the streets and i just had to wave!!! And i got one back!


Funny how something small can just change your day - for the good.




I know i should have something profound to say, but i can't think of anything. Some of the bloggers i follow have had a rough, tough time this year - not always big things, but enough that i wish i could go and at least make a cup of tea, or give them a bit of company for a while.


BUT - i think our good days are like that shining star. So put your star somewhere high, where you'll see it, even on the darkest of days, when you think nobody really cares. Think of me and have that cyber cup of tea, or coffee, or glass of wine - it'll be on me! 


So, if you celebrate Christmas, or Hanukkah (hope I've spelt it right!!), have a good time with family, friends.................
Or if you just have a break at this time - enjoy!!!

Good days and bad days...............

...............Thankfully mostly good days!!! Life has been a bit hum drum the past week or two - just trying to keep up with normal routine things. And trying to keep in touch with my friend Lynne from over at The Giggle Fest. 
But more of that in a mo......




The good days................ Well, big drum roll here please................Matthew has started his new job!!!! Yahooooo!!!
He has been out of work since this time last year. It has been really hard to try and stay positive. Loads of job applications and some interviews. Sometimes the number of hours just wasn't right, or he was told he didn't have the experience or whatever.
But a couple of months ago he went for an interview for a Support Worker job. It was with a company who help support various people - learning disabilities, elderly, people recovering from addictions. The interview went well and he waited.
A couple of weeks later, he got a call to offer him the job, subject to references and the disclosure. The references were fine. The disclosure took a while to come thru. NOT i have to say because he has done anything that would show up. It's just that the way it's done has been changed in the past 8 or 9 months and people are still trying to get used to it.


In the end, it was fine. So he got a call asking if he could start last Sunday.
Could he??? MMmmmmmm - duh - YES!!!!! He'd have gone in that day if he'd been asked!!!


So far it seems to be going well. Since Matthew took his redundancy from BT nearly 8 years ago, this is the kind of job he has wanted to do. He seemed to go round the houses to get there mind you, but he has at last got it. He's worked in Care Homes - not really what he wanted - too regimented and the residents seemed to end up sitting in the day room watching mindless tv while the carers moaned and bitched. He worked as a postie - mmmm - less said bout that the better - not a nice environment. An women are meant to  bitchy!!! Try men!!!
He worked as an industrial cleaner.
Ok - it was money and really put him off eating in some places.


But this year he hasn't sat about - he did some voluntary work with Epilepsy  Connections. And I have been feeding him a lot of stuff about Peter's support. Like it or loathe it - it seems to be the way that the Council wants to do its support to people like Peter.


So i think it all helped. The first week went well and he has 3 training days next week.


The not so good stuff is Lynne's son Jack. Long story short, he's just not been well tha past 6/8 weeks or so. I feel for Lynne and her daughter Holly. I'm in Glasgow, they're in Elgin - good couple of hundred miles apart and i can't even go and make her a cuppa. They have been doing the "Grand Tour" of hospitals on the East Coast of Scotland.


 Not got to the West yet- and i'm kinda hoping it stays that way!!! Not that i don't want to see them - it's just that if he ends up at sick kids here in Glasgow, it means he's really not well - not just a bit not well ,but blue lights, sirens and maybe helicopters not well. And i don't want that.


I have sent emergency chocolate supplies to Lynne to cheer her up. It's not much, but i'm hoping it helps.


SO - that's been me the past few days. Making sure Matthew gets up and then checking FB or my texts to see how Jack is doing.


So tomorrow is another day and another week. I hope it brings better news for Jack and Lynne. 

if nothing much is happening here..............

.....................Why do i feel as if i'm running around so much?!?!?!?!


I know - i shouldn't really complain - it keeps me out of mischief and away from the ironing pile!!!


At long last tho, we are getting a handle on our workers. We now have cover for a wednesday and it means i don't have to hang about college like a spare part waiting for Peter! Cheryl is doing the pick up and entertaining for just now.
So i went off and did some shopping this morning and then headed home - i almost expected a call from the college to say no one had come to get Peter. They are pretty useless  about stuff like this and expect us to jump. 


My paperwork got sorted and i headed to the Lawyers on Monday. No mean feat to get outta the door!! I had to bribe the cat with some cheesy dreammie treats (the treats cats crave so the packet tells me!!!!) Having got her out of the dining room and closed the door, she decided to flee up the stairs. 


So there was me, standing having a conversation with a cat about how i HAD to get out and would she PLEASE get down the stairs and into the kitchen so i could close that door and, well - get out!!


Like the cat understands EVERY word i utter!!!


She prob does - just chooses to ignore them!!! Bit like the rest of the family - she is learning fast!!!


I did get into town, only to be accosted by Matthew's Auntie Chrissie, who had just met him on the bus!!! Matthew, being a typical man, had given her the bare bones of how we all were - she just wanted to add the meat to it and find out how we all really were!!!  Chrissie is lovely and she would never walk by without saying hello.


So eventually, i got to the Lawyers. I feel better now that the stuff she needed was there and given that i have had no call to say otherwise, i'm kind of assuming it was just what she needed.


Peter and i went to see Arthur Christmas yesterday - we found it good and Arthur and Grandsanta reminded me a lot of what Peter and my friend's Dad on Skye are like!! Just nice to see 2 generations doing something together!!! I will not give the story away, lest any of you wish to go see!!!!


Now that i feel better and am not going to moan about any more, i'm going to go and make a start on some of the captions and photos i have printed out for the scrapbook i'm doing!!!

Never enough.........

......................Hours in the day or days in the week!!!


I feel as if i've been running around trying to get some things done and not really getting anywhere. 
Just as well i'd had those few days on Skye to relax, laugh and enjoy with Linda.
Mind you - Peter was relaxing, laughing and enjoying with Lachie, so i was happy about that!!!!


Since coming back, i feel as if my ear has been stuck to the phone to sort out things, my bum on a seat at meetings or knee deep in paperwork and not finding the bit of paper i need.
Actually, i lie about the paperwork - i haven't even got that far yet, but i know i won't find it and will need to phone and get a replacement!!


First thing to do last week was to phone to check that Peter's respite for the weekend was ok. The person who deals with it had phoned while we were away.
Only trouble was , she was out of the office and they couldn't access the files needed.
Tuesday i phoned the respite family to explain - and Chris said "oh, heck, just bring him down and we'll sort it later. You know the funding is in place.


I also had a meeting with Enable to meet a new worker. Her name is Sarah and she's lovely. She's covering the thursday shift, so her and Peter are doing Art Class together. We still have to work on wednesday cover - we thought one person might be available, but they're not too keen on going swimming.
In between all this, i had to phone the Lawyer to organise an appointment to deal with the renewal of the Guardianship order we have for Peter. We have to make some changes on this, so that will be fun.
By friday, the respite was officially confirmed by the office and i had Peter's bags packed.
Done, dusted and he was going!!!


So we had a fairly quiet weekend.
A bit of shopping, started some ironing and  not much else - i seemed to lack the energy!
I picked Peter up from respite yesterday - he had a great time!! He'd been swimming and to a Halloween party . He and Sarah had gone out guising on monday evening - he came home with enough sugary sweetie things to last him an age and nearly £8!!!!


The lawyers this morning - had to fill out paperwork and thankfully, we should get Legal Aid for the application. The medical reports themselves can add up to a few hundred pounds alone before we even get a mental health report. I don't grudge paying for things, but this is one thing that i would not really be able to afford - and it's something we really need to do for Peter. Especially the financial part of it. The council have said that  we need that in place for the bank account that will eventually have Peter's support budget in it.


So it was off to the bank to ask for up to date statements, back home to look for stuff. I have found one thing we need and think i know where the other is. I may need to make a call or 2 to get another bit of info, so that'll be done the next day or so.


And i wonder why i feel so tired?!?!?!?!?!?


Just as well ASDA have Southern Comfort litre bottles on a special offer just now - i think i'll be needing a scoop or five before the week it out!!!!

Rush hour on Skye..........

...................Is 2 cars, a white van and a truck! So no wonder the bus to Armadale was late!!!


Yes - another visit to Portree and my crazy friend Linda!!!!


And we were not disappointed


We got the bus tuesday morning and arrived about 5pm. It was fairly busy - october holiday for schools and the Mod is at one of the other islands, so travel is busy. There was snow atop some of the hills. Man - it's only october. It's not meant to be like that!!! And it was COLD. Methinks we may have another long winter ahead.
At one point, the bus was driving into the rain and wind, and said wet and windy stuff was trying hard to push us back!!!


Arriving in Portree, we met Linda and Harry - our lovely taxi driver - were there to meet us. Another bit of gossip for the town was created when i gave Harry a birthday hug!!!
Off to the bed and breakfast to unpack and then up to Linda's for dinner. We had fish and chips from a local place - honestly, the fish tasted so fresh, i almost expected it to wink at me!!!


Peter and Lachie were happily choosing their DVD to watch, SO linda and i sat and chatted.


Of course i took Kimble's chocs - i had been warned that i wouldn't get within a mile of the island if i had forgotten!!!!!
All too soon (after a drink or 2!!) it was time to go back to the B+B. I promised that i would get Lachie's papers and bring them up with me in the morning.


Our breakfasts were lovely - i'm sure Chrissie wanted to feed us up. And she wasn't bothered that all Peter asked for was sausages and toast!!!


We sat and chatted for a while and Linda's girls were in and out. Our plans for the afternoon were to go for lunch at Marmalade - a lovely place - and then off down into the town centre.
Lunch was indeed good and we didn't really want to move, but felt we had to. A look about a few of the shops and then back to Linda's. 
Dinner then the chat and s drink!!! Oh - and planning for the next day!!!


We decided to go to Armadale to the Clan Douglas Centre. Unfortunalty, it was raining, so we didn't spend much time outdoors, but you could tell what it would be like on a sunny day. Heck, it was so wet and cold that the Peacock would not display his feathers and if he would have spoken, would probably asked one of the humans to open the doors and LET HIM IN!!!! It was funny to watch him wander to a bit and try to get shelter.


The museum was good - interesting, but Peter gets bored quickly, so you have to keep him going and try to look at things on the hoof.


Then we went off for lunch - Soup and sandwiches - and to be warmed up.


Linda and i were really annoyed at one woman we  - or rather Peter - encountered. On our walk back down to get lunch, Peter was walking ahead of us. Not too far - close enough to call to him if needed. A woman and a couple of men came along. The woman was in her 60's (at least) and said to Peter "which way is the castle". He just kinda looked at her as if What???? and she got a bit annoyed - she tutted a bit in a huffy way and said to us (who at that point realised she had asked Peter a thing he couldn't answer) "where IS the castle!!!!".


We felt like directing her to the water and telling her to jump in and she may find it, but we were not in the mood for a crabbit auld wummin who had met up with Peter and thought he was stupid. We knew that we had the better person to have lunch with!!!


All too quickly it was time to think of going home. Our last evening we sat and made plans for the next visit - hopefully March. We can't wait.


Friday morning, the rain was pouring down and the wind was blowing a hoolie. I seriously thought we would be going home by ark instead of a bus!!! And it rained almost all of the 7 hour journey!


I knew i was back in Glasgow when we hit friday evening rush hour - considerably more traffic that 2 cars, a van and a truck!! It was busy, noisy and loud.


I must be turning into an island person!!! 

All life starts......................

...................At A + E at Glasgow Royal Infirmary!!


The reason i know this, is because Louise and I spent last sunday afternoon/evening there. Lou had been suffering from a sore head solidly for almost 4 days - she also had some neck stiffness and mild photo-phobia............. no prizes for guessing where this might have been going.


The pharmacist suggested going to the out of hours clinic, given that Lou works at Sick Kids and could have come across any manner of buggies and beasties that do the rounds at this time of year.


So off we went to out of hours. Triaged by the nurse, then a wait for a doc.
And wait. It seemed to be change of shift and a new doc came in - Lou didn't like the look of him and to be honest, neither did i. Guess who she saw?? You got it - him. His english wasn't brill and he couldn't understand WHY Lou had come along, even tho we explained about her job and the pharmacist advising it would be good to get checked.
So he made a phone call to A + E. We were to go up.


Took Peter home (had to take him with us since Matthew and Paul were out). Then headed to the hospital.


Actually - for a sunday afternoon at one of the main A+E departments in the city, it was fairly quiet!! We only saw the police frogmarch  one person in!!!! 
No footie matches on, so no fighting.


We booked in and were triaged again. THe doc at out of hours was a bit blazé. but the nurse was good when we explained where Lou worked.


So we had to go and wait - again. 


So our people watching started.
An insight to parts of life we never usually see!!


One man came to reception to ask about his wife. He thought she'd been brought in earlier - he had decided to go shopping then come find out how she was!!! (mmmm - normally the other way about - woman shop, man ill!!!)
Then the people who think the can walk thru the department to get to the other parts of the hospital - and they get miffed when they get told they have to walk back outta the door and go to the right place. Yes, the staff can access the hospital from the department, just not the general public!!


Then came a wee man in off the street - woolie bunnet on his heid and back pack over his shoulder. Eventually he was booked in and came to sit in front of us. He looked round to see who he could strike up a conversation with. 


At this point, Louise and i found a speck of dirt in a far corner very interesting!!!!


He managed to engage with the woman beside him. He complained of a sore chest, admitted he smoked and had inhalers. The woman commented that maybe he should chuck the ciggies and that might help.


Oh, ah canny be daeing with that, was the reply.
(so why are you here then, if you do nothing to help yourself???)


Then he complained of hunger - he was offered a toffee by this woman and she got the reply of "i've nae teeth to chew!".
She suggested crisps from the vending machine.
He needed something more substantial than crisps!


What, we wondered, did he expect in and A + E Department?? 5** fine dining and wines?!?!?!?!?!?


I always tell my kids that if they are well enough to be picky about food, they do not need to be near that kinda place. I was tempted to offer this choice nugget, but Lou's name was called.


Saved by the call of the assessment unit!!


So we went thru - bloods and ECG done, we were told to wait and a doc would eventually get to us.


So all that was left to do was people watch - again.


But what is it with people and them thinking that paper thin curtains are actually soundproofed??? They seem to think that the people around them are deaf and do not understand a work anyone else says.


Across and to the right, we had a patient, who was an American tourist. I'm sure visiting a hospital as a patient was not on his top ten "to do while in Scotland" list!! It was decided to take him up to the ward to see how he and his chest pain did overnight.


Across and to the left came in a woman on a trolley and her daughter. The woman get berating the daughter for making such a fuss. But, truly, the woman did need some kinda help. I heard the daughter mention things like anti depressants and how the mother had tried to commit suicide recently.


See what i mean - you could hear almost everything.


Louise and i chatted for a while and we could hear comments that other folk - like the woman who was asked if her sister had come in the ambulance with her. She said she thought so!!! (turned out the sis was still at home!!)


More and more we could hear the woman across from us giving an earful to the daughter. She said her neighbours would be shocked at an ambulance being at the house at 6am. The daughter pointed out it was the afternoon and they were not long in the building .


I really felt sorry for the girl - who it turned out had been caring for her mother 24/7 for some time. When the mother said that she was a "STUPID GIRL" i really wanted to go in and  shake her till she saw that her daughter was very loving, obviously concerned due to the fact that her mother wasn't well and that she should be glad that someone cared about her.


By that time, i was thinking that if this had been a relative of mine, i would have driven along the motorway and jettisoned her as we passed the hospital and then put my foot to the floor so i could escape FAST.


It was sad.


Eventually, we did get seen and the doc decided to keep Lou in. Not because she thought there was a danger of infection - more because she never suffers from headaches or migraines and they just wanted to make sure she was ok.


Monday morning i got a call - Consultant had done the ward round, said she'd done the right thing and said she could go home - it WAS just a bad sore head.


It was kinda scary and we waited sooo long to get to the ward. But at least we know she's ok.
Now we just have to deal with the sore back she has..........................




She's on her own there - and has an appointment with the GP this week.


Peter and i are on our way to Skye in the morning, and i can't wait!!

Sharing, Caring and how time flies

It's now a year since we started our support with Enable.
It took us a few months to do the paperwork, get the budget and then decide who we would get support from.
Hey - scary stuff. I've never done this kinda thing before. 
But i had to try.
It was getting to stupid, being told when we could have support and who with by the council. And where Peter could go for respite.
Like, duh - do these people who organise such things really know Peter better than we and our friends do?!?!?!?


The photo above kind of sums things up. Over the past few years I have cried plenty on tears.
 Frustration mostly.


Frustrated by the slow wheels of officialdom and what "Professionals" have to say about my son. Social Workers who say that he is "no different from other kids his age" and  that "we didn't turn up to meet respite families" when due to them not knowing their bums from their elbows kind of forgot (on purpose?!?!) to tell us where and when the meeting actually was!!!
I've even been told that the crisis no longer existed when it was obvious to people around us that we needed HELP!!!!


But the past year has been good.
We got the help and the support that we needed - at last.
An we got to choose who we got it from, when we got it and hey - we even got to ask for extra hours when we needed them.


Had i moved into some kind of fantasy world?!?!?!?!


At times it felt like it!


Yes - we've had niggles - sometimes things didn't quite work out with the workers. But that was ok - we could look at having back up workers. We didn't need to "take it or leave it". (mostly i used to want to just leave it!!).


I did find it a bit hard at the start - i may have locked control freak worry wart in the cupboard under the stairs, but i had to remember that we were in charge and had to set the pace. I would sheepishly ask for extra hours to be told "you don't need to ask - the hours are there - USE them". 


I'm getting better tho - slowly!
Nearly relapsed the other day - it hadn't quite been pointed out that Peter does college on a monday and we'd need the back up worker to get him there - Nikki, our usual monday support was away on a well deserved holiday.


I got the phone call asking me what time i wanted someone in and said "well, i expected them ages ago".
THe reply was "oooppps -sorry - forgot college today". So we set about trying to sort a time for some support later. I started saying "oh, if it's too much hassle.................."


Got my ear chewed for that!! It's still sore!!


Enable have been great for Peter and for us as a family.
We've needed the support and got it.
Why couldn't it have been this easy years ago when i was in tears and really needed help?????


Loads of times friends would be helpless at the end of a phone call or text message, unable to really do anything to help and slowly watching the car crash that was my life. Getting hassle from people who should have been supporting us, but instead were questioning every move we made and when we did get the odd crumb of support from "officialdom" they would question again and claim there was nothing wrong with Peter that being told to "grow up and act your age" wouldn't cure!!


Yes - those people lived in my life and they were a lot closer that most people know.


Mmmmm - how did i survive without pleading with the men in white coats to cart me off to the nearest loony bin??????


(Possibly the fact that Matthew's sister is one of them people in a white coat did it!!!)


And how some friends still talk to me is beyond belief - it can't have been nice having me around at times.


But i'm looking back on the past year at all the things Peter has done.
Art class on a monday evening (and if anyone knows anyone with loads of money to spare, can they send them in the direction of Projectability so said monday night class can start up again, many people would be grateful!!!)
Days out to the zoo (no luck at trying to get Peter kept in!!) cinema, going off to Perth with Ashleigh to tell others of his support.
And the respite - Skye, Kielder, Dalry (with the guy who mops the floor and the log fire..................!!! I WANNA GO THERE!!!)
And to make sure the budget got spent, another trip to Skye and a trip on the Caledonian Sleeper to London.


Maybe Peter comes home to have a rest!!!


Mmmmm - i don't think i was ever away that much or did as much when i was 21!! College is almost like an afterthought at times!!


I can't believe we've packed all that into a year.
And it has helped us get a break and do things with Louise and Paul.


Below is a link to a film that Enable have made. I know exactly where the mum is coming from - even tho Peter and her daughter have totally different support  needs. All we are asking for is a small amount of good support to help us out. We're not asking for lots of money, or material things. 


Just someone to lean on


http://youtu.be/o1q5k9oqI1o

Havens

I suppose we all have a Haven that we want to go to when times are bad or we just want to have time out.


My friend Linda - my partner in drink and kimble chocolate eating - stays on Skye - ye s - the Island just off the west of Scotland that Charlie (he of the Bonnie Prince title) fled to.
Linda stays on a new(ish) housing estate, where all the street names are in Gaelic. Her street is called Rathad Na H Airigh.


Now - not speaking a word of the Gaelic (i am a lowlander!!), i didn't have a clue what it meant! Neither did Linda - even tho her Dad spoke Gaelic when he was young, when he came to live in Glasgow, it was always English he spoke.


It turn out (because the now have street names in both Gaelic and English) that Linda's street is "the Road of the Sheilling". 
A sheilling is a place of save haven, a refuge. Often it would be somewhere that the shepherds out oh the hills would go if weather turned bad and they could not get back home.


(But I'm sure Linda will correct me if i am totally off the mark!!!! She who has turned from CITY Girl to Island girl!!)


There have been few havens over the years. 


One was the very first place Matthew and I bought. 
Top floor flat.
Our first place together. Coming home after our honeymoon and opening the living room door to catch a smell of the Roses from Matthew's Mum's garden. The proper kinda roses - nit the "lovely to look at but no scent ones" you often get. THe smell takes me back in a flash!!!
It was also the place we brought Louise home to after she was born.
Nothing like it!! If i could have expanded this place i would never have left, but alas, leave we had to.


Our 2nd place - well, to be honest, it was a roof over our heads. It was what we could afford at the time, but it never really quite felt like home. It was big enough for our needs at the time, but i have some not so good memories - like everything that went on with Peter and then some years later me being really ill. And one lot of neighbours really got to us. 


The good things round about then were - having the boys and getting to know my friend May. It might not sound like much but it was enough to help keep my shreds of sanity intact.


I have to admit, after living in this house for 15 years, i can just about call it my haven - ok, some rough times along the way - what is it with some neighbours, who try to make your life a misery???? All because you go to a diff church or school. But they are well outta the way now. 
It still unnerves me tho when nice neighbours decide to move on - i get worried about who'll move in and wonder if we'll go back to the hassle and name calling that Lou, Peter and Paul got about Peter.


Now to be honest - most of my neighbours are ok. They are neither too aware of Peter's problems or they really just don't give a toss. He's just Peter who stays in that house.


But you know what - my haven the past year has been the times i have spent in Portree. Just having someone we can be with, who has known me for soooooo long. There are things i can say and tell Linda because i HAVE known her so long that i maybe couldn't say to others who i know. 


And best of all - the therapy is reasonable rates - choccies, booze and lunch!!!


Now that would be the best haven of the lot!!

Stop the world, I want to get off.....................

...............And never get back on thank you very much.


After the good week last week and letting people know how a Self Directed Support budget can work WELL, I now find myself on a downer.


Not just any old downer, but that "reviewing budget" downer.
The one where Glasgow City Council make us sweat, jump thru rings and generally be in the corner stuffing our fists in our mouths and crying our eyes out with worry that the budget we worked so hard on last year will be cut, slashed,torn up, or even worse - put thru a shredder and you're told to just get on with it.
Meanwhile you are expected to keep a hold of what remains of your sanity.


Not an easy job and it's one that 
a) I don't get paid for
and
b) Didn't apply for.


I went into the Enable office this morning - had some paperwork to give Alisdair. I also wanted to check about booking some of our family based respite for Peter next month. Carol had said that Sara was keen for Peter to be there at Halloween and they could go out guising.


Hey  - we don't do no trick or treat stuff here in Scotland!!!!


Alisdar phoned Laura to check - when Peter's budget review is getting done.


It's tomorrow.


And they will not let on how much we will get till Laura gets to the meeting.


No clue to an increase, a cut, the same money - nada, zilch, nothing, zip.


All i DO know is that since Peter got his budget approved last summer, that others have been given a budget, only to have it slashed by up to 75%.


Ok, the sensible part of me says there is NO WAY that Peter's budget can be slashed that much. He is out of school, he is doing college, but less college than last year - that old chestnut - cutbacks.


Have these people not seen just HOW the SDS can CHANGE LIVES????


They obviously didn't see the presentation we did last week. How happy Peter is in the photos of various things he's done with his workers, the respite he's had. How much people have seen big changes in Peter in the past year - more confident, happier.


And the rest of the family are happy too.


And now i have to wait 24 hours before i know if i have a mega battle on my hands.


Again.


Do these people not realise how much families put in to caring for sons, daughters  brothers, sisters - for nothing much in return, but they are happy and well looked after.


I'm not asking for Peter to be cared for by others at humongous and outrageous cost to the city.


But neither did i ask for a child who has dodgy chromosomes and learning difficulties. 
Neither have i asked for the hassles, the fights, the family and friend fallouts over the years. The people who just don't "get" Peter and people like him.


I've not asked for my other children's lives to be turned upside down either. Days of running late to school because Peter's bus was late, friends who couldn't understand why they couldn't always just stroll home from school, teachers who don't understand WHY you can't just drop everything to get to an event with the Senior Chorus, or take part in young Musician.


Times when things kicked off and Essays might be late for Uni.


And me somewhere in the middle trying to make sure that life is "normal" and my kids don't miss out or get caught up in the politics of it all.


All i want for Peter is a good life.


Oh, and some reserves of sanity please.


I'm getting fed up with the hoops you have to jump thru.


I know in this economic climate thst you have to be careful with money.
BUT - i've been doing this caring lark for nearly 22 years.
It's only recently that we have been given a budget that really covers what meets many of Peter's needs.
Some things in the past have been promised and never materialised.
I'm still waiting for the worker from Capability Scotland, the funding for which was ring fenced about, oh, EIGHT years ago..
I'm still waiting for an apology from the Social Worker who messed up our visit to a shared care family, because the other SW went off sick and didn't bother to let anyone else know we were meant to meet them.


Oh - and crazy sw says it was our fault for not turning up for a meeting!!


Now - excuse me, i KNOW i'm good, but even I can't turn up for a meeting when i don't know where and when it's meant to be!!!
I'm good - just not THAT good!!!


Ok Rant over.


I have confidence that Laura will put up a great case for us tomorrow.
The Enable team KNOW we will fight it if the Council see fit to slash the budget.


And i know they will help us.


But honestly - do you really blame me for wanting to stop the world and getting off??

Naidex @ the SECC - Day 2.

Yesterday was Day 2 of the Naidex Exhibition.

As well as being my birthday!!!

 

I'll start with opening my birthday pressies!! I did have a sneak peek at one on Wed night - Louise's friend Charlene made me a birthday cake!!! The above photo is the creation!! Good, isn't it !!!!!  


I got some lovely pressies - A lovely cat ornament from Ortak. It is so cute - reminds me of Lilo scratching. I also got earrings and some other goodies Louise bought from Camden Market.
Matthew bought me some perfume - well - 2 bottles of my fav perfumes!!


I'd arranged with Matthew that i'd meet him at the SECC. He was going to the exhibition with a group he does some volunteering with. We had a look round before i went back to the Enable stand to meet up with the team. Mind you, in true fashion, i got talking to a Speech Therapist who was at the BSA open day we were at a few months ago and remembers Paul playing his clarinet!!


This was added to the person i met on the first day who i knew nearly 30 years ago!!!! 


I headed back to the stand and promptly brought out the bag of Percy Pigs and Rosie's Nosies i had to share.


Well - it was my birthday and i felt we needed goodies!! 


They are yummy and we all enjoyed!


We went to the place where we were doing the presentation. The one before us was also about Self Directed Support - I could tell that some of the people were worried about the introduction of this new way of getting support. And even tho  the guy "knew his stuff", i felt (from what i'd heard anyway) that he didn't quite get it over how this would help families who wanted to go this route. I think he was someone from the Scottish Government - but really, he should maybe have brought someone along who could speak of best practise.


Listen to me - i'm almost into Social Work Speak - Best Practise indeed!!! 
Where do i pick up the choice phrases from!?!?!?!


My comment to Theresa was that it'll be a bit like any other changes that take place in Social Services/Education/ Health - a couple of years down the line, people will wonder why there was so much fuss and why we hadn't thought of doing it this way before.


So the tone was set for us. The good thing was that we felt more comfy in what we were saying. I wish some of the people from the previous presentation had stayed to hear ours. We were very focused on how we put it across. Yes, you have to plan, yes it's scary at first, but when you got into it and talked to others, you can get so much more for the person you care for.


We had some questions. 
One was from Kitty - a lovely woman who works in the Enable Office, seems to have a wicked sense of humour, has a great laugh and oh - way down the bottom of the things i learned about her is that she has some learning disabilities. BUT - that's not the first thing i noticed!!!


Her question was about getting respite. She wanted to know what we'd done, how we'd sourced it. I told her that Skye - well, we went to visit friends and it meant that Peter got to know the girls and i got a break.
I went on to tell her about the small holding in Ayrshire 


The log fire.
The guy who mops the kitchen floor.
The grandad with the soft top, 2 seater sports car!!!


I could see Kitty was getting soooooo interested!!!!


We did talk a bit more later and i told her more. I think she is VERY interested in trying to find something similar.
And i do hope she does. Any family she chooses to visit will find a very lovely, friendly lady who loves to have a giggle and a good time. 


Another question i was asked was if we knew what our budget was before we chose who our provider would be. I said that i did know and after i found out i then went and commissioned services.


Mmmmm - that old social work speak coming through again. 
Here was me talking about commissioning services.


eeewwwww - get her, as my kids would say!!!


Back at the stand - after talking to a couple of people and having someone tell me i was really good (no - i didn't bribe them with sweeties!!), the team gave me a birthday pressie - Now that was a surprise!! And  a nice one. A bottle of  Southern Comfort and some choccies. 
Thanks Guys - that was really nice of you!!!


And the stand next to us - they had been giving out fizzy wine, so someone went to get a glass for me!! Haven't a CLUE who they were, but the wine was duly drunk - and enjoyed!!!!!


Some more questions and then it was almost time to go home.


Geraldine gave me a lift home - and she told me (after 2 days together!!) that she had gone to the School Lou and Paul went to and added to that, her Dad was Head of Art!!!! 
I think she maybe left the school a year or maybe 2 before Lou started. There are still a load of teachers roaming about that she knew!!!!!


It was a great experience doing the presentations. And no - i wasn't paid to say the nice things. 
Like many families who are caring for someone who has learning disabilities, it has been really hard to source services. Good, bad or downright rubbish, you often found yourself howling at the moon, have so called "professionals" question why you need these services and that "Maybe" your loved one will "grow out of the problems".


Thankfully, there are people like Enable who can help and encourage and generally just be there for you


I'm hoping i was of some help to some people. I did say to one or two parents that if they wanted to chat more to get my phone number from Geraldine. Sharlene, a young lady who was with us in Wednesday - she's really keen to do her "own thing" and of course - her mum is a bit nervous.
But i think her mum is a bit like me - worry wart control freak and just wants the best for her daughter!


My worry wart control freak persona is still locked up in the cupboard under the stairs.
She's staying there for the foreseeable. 
Heck - she's not important enough to share my bottle and my chocs with!!!!!

Being in the world of the grown ups!!

I've had a good day today - i was allowed to join the grown ups in the grown up world!!!!
And i got to be out on my own without a responsible child to look after me!!!


Wonders will never cease!!!!


I was  asked by Enable if i would help with things they were doing at the Naidex Exhibition here in Glasgow. The exhibition has a multitude of stalls covering many aspects of life and things for people with disabilities - physical or learning. Adapted cars, furniture, groups like Enable............. the list goes on.
I was asked to helped with the presentation about Self Directed Support and how it has changed Peter's life and what we do with our support.
Geraldine - one of the Enable staff and i have been in contact about what we going to be say and what would be put in the blurbs and so on.
She is Mega Efficient - so focused on the job!!!


The first time i met her, my thoughts were "OMG - she looks SOOOOO professional and he're me rocking up the the radio station to do an ad in my jeans and t shirt hoping to all Gods in the solar system that i at least look clean and my hair is brushed!!!!!"


Scary woman in a suit!!


Actually - she's not that scary when you get to know her, but i wouldn't cross her!!


I have to admit, i was a bit worried that i'd have nothing to say.
For those who don't know me, this a first - well, almost!! Me not knowing if i would have anything to say!!


It's that old west of Scotland thing of not pushing your boat out too far, lest you get into deep waters and can't get back!!! 


Linda, my friend in Skye told me to DO IT. Just go and heck - if no one listened, so what - at least we'd kept Keegan gainfully employed for an hour or 2 filming away to his hearts content!! (it ok Enable Office - We did make sure he got fed, watered and sent on his way home!!!)


I knew i had to tell our story and of the support Enable have given us. I have mentioned before, but they are all a good crowd. They support many people, in many ways and for some, they are family. That is the bottom line for many of the folk in supported accommodation. Even when there is family about, the support workers become extended family.


I met the girl who was doing the presentation with (and offhand have forgotten her job title in Enable!!!!) and as Geraldine went to get a coffee for her, we found out that we knew someone!! Absolutly nothing to do with Enable, Peter, learning disabilities, but a Doctor at one of the Maternity units here. Not just anyold doc, but the Clinical Director!!!!!!!. My comment was that i wouldn't buy a used car from the guy, but i'd trust him with my life. 
And oh, yes - i just had to do that about 16 years ago!!!!


SO i didn't feel too bad about the whole thing.
Along with the comment that was put on my Facebook by Norbert CEO of the British Stammering Association. He said that i was the woman to got Ed Balls (the shadow Chancellor) and gave him a right good piece of my mind  - now, THAT was scary!! (and i'm sure almost got me locked in the Tower last year!!!!)


It was nice to see the final version of the filming we'd done and we'd done. 
Linda and i don't look too hung over. (thanks K for making sure we were in good light!!) and Peter and Yasmin were loving it!!


It was strange being in among Grown ups for a while. Eeekkkk - scary stuff. You can end up in a little bubble and forget that there is a whole big world out there!! 
And Donna - she of the red shoes and high heels - was there. I did remind her that my knees were sore just thinking of them!! If you're wondering what i mean - go back in time in my posts to the one of the evening we spent with Enable last year.


And best of all - i get to do all this again tomorrow!!!


I am going to be very nice and take along the bags of Percy Pigs and Rosie's Nosies that i have hidden from my children and share them! I cannot believe i have had 2 bags of sweets since monday and they have not sniffed them out!
Mind you - i could go and find empty bags with nothing more than a note saying "thanks LOSER!!" inside!


And i get to spend part of my birthday with this lot!!!!
He he he - will be good!!!!!