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!!!!!

9/11

9/11.


One of those days you'll always remember where you were and what you were doing.


It was early afternoon here in the UK when the news started breaking. I had been watching the lunchtime news and was starting to think about going to get Paul from school, watching a bit of neighbours and trying to think what was in the freezer for dinner that night. 


The programme was interrupted for a news flash.


My 1st thoughts were that the Queen Mother had just died.
After all - nothing BIG or MAJOR ever happens on a weekday afternoon.


But no - the pictures told a story of a building with smoke pouring out.


I began to think it was some kinda rubbish film, but then.......... The BBC don't just interrupt daytime tv for a film.


About 2.30 i had top drag myself away from the screen. After all - i had children to get from school and in my fuzzed brain, i didn't actually believe this was going on.


I can't remember the walk to school. But i do remember meeting Hannah's Gran. H was in Paul's class. She didn't mention a THING about what was on the tv. Not a word. 


Nobody mentioned a thing and i began to think i was living in a parallel universe.


Eventually i got home, got Peter off the school bus and turned on the tv - to find that what was happening was real. Louise came home to say that they had head at school and it seemed really bad.


Then came the stories of people trying to get home. My cousin was here in the UK at a conference - his mum and dad had been in Spain visiting his brother. The plans were that he was meant to be coming to Glasgow to stay for a few days before going back home to Australia. That didn't happen. Actually - i think he managed to get half way round the world before my Aunt and Uncle got back home!! Maybe not quite, but it was a close run thing!!!


We have travelled several times since 9/11. I kinda think we were used to some of the security here in the UK, that maybe Americans weren't - we were prepared for the "did you pack your own bags" thing.


I do remember being in London a couple of weeks after 7/7. People were wary. But that was no excuse for rudeness. (mega rudeness for london!!) One girl shoved past Paul on to the tube. My hubbie asked her not to be so rude and she looked at us as if we were mad. I wanted to shout at the people and say that i COULD have cancelled the holiday we had booked and stayed at home being scared. But i didn't. I had promised my kids a holiday in London - the sights, a show. I wasn't going to give in to some faceless numpty who thought we were all infidels. 


It got worse when the tried to car bomb Glasgow Airport.


Note to anyone who pisses off people from Glasgow.
We do not stand for it and will not let you do it to us, or those people who have decided to visit our city!! We are a friendly city. (ok, so we are also the stab capital of Europe. You get stabbed, but we'll give you directions to the hospital!!)


JOKING PEOPLE - that should not happen.


I have noticed a lot more security when we travel. Some is better that others. Like in SF, when i was showing the passports as we went thru security and the girl said "only you and hubbie" Mmmmm - my daughter WAS 18!!! THey looked a bit sus. (like why would i voluntarily show her passport if we were lying!!!)


I think this flagged up security at the other side - Peter's bag got pulled as it went thru the machine.


You can just imagine my reaction - Oh holy moley - they would HAVE to pick on his bag - the one with the severe and complex learning disabilities who if a question is not worded just right, could give a reply that would have closed not just the airport, but the city and airspace over the western seaboard!!


Thankfully, as the girl got talking to him, she realised that there was something a bit "different" (ok, that and the fact i had just superglued myself to Peter!!!) She kept the questions simple. Ok, he said mum helped him pack his bag. No, no mobile phone, but Mum had asked him to put his books in and had told him to make sure all his bits and pieces were there.


Travel can be interesting, but i draw the line at getting sucked into something i can't get out of!!!


It hardly seems 10 years since it happened. My friend's son - it's his 12th birthday. My kids have grown up and life well - goes on.


I suppose the best way of getting back at the idiots who do this is to have a good life - don't judge other people by what one or two similar (or what we think are similar) people do.


So whoever you are, whatever colour, religion, remember those who died, who are still affected by what happened 10 years ago. But remember to look to the future - and hope it's good