It's beginning to feel..........

...............A bit like Christmas.
At last!!!!

I can't believe it has been nearly 2 months since i last blogged.
Have i had nothing to say??
Well, no, not really, just not much time to say it!
Such is life in this house.

After the departure of Josh, we now have 2 new workers and some back ups as well.
Ok, Callum started off as a back up worker, but is now doing Mondays with Peter and it seems to be working out well. They have lunch, go swimming and then decide what else they want to do. Usually works out well.
Lauren is doing Wednesday and Thursday. 
Again, going well and like Callum, often thinks of different things to do.

We've had a hospital visit.
Remember the infected toe? 
Well, we decided that after years of infections (and that doesn't even count the times we've managed to stop the toe becoming infected), it is time to get the toe nail OFF. A segment was removed 10 years ago, but the good effects didn't last long.
The podiatrist at the clinic thought day surgery and a general anaesthetic was the right way to go.

Pre op assessment last Wednesday and hopefully, the surgery will be done and dusted before mid feb.

We also had a visit from the psychiatrist from the Learning Disabilities team at the beginning of the month. She has started an assessment and will see if she can figure out these vacant spells and laughing/talking to himself spell that Peter has been having. She'll see us next month, but meanwhile she's getting some of the paperwork our GP has sent to her so she can look at that.

To be honest, even though i'd bought and wrapped pressies, i couldn't start to feel christmassy till i'd got those appointments out of the way.
Oh, and found out who was actually going to BE here on the day.

Peter concentrating!

Simba hiding behind a Mickey ornament!!

Peter wondering if this is our transport home!!!

Luckily Matthew and Lou both have Christmas day off, so it's a full blown turkey and trimmings day!

Hope you like the photos. We kind of have a tradition that we put the tree up together. It may not be picture perfect, but we all get to look at the decorations we have amassed over the years, remember visits to Disney in Paris, being in Yosemite in California. It's a nice afternoon and we generally put on a Christmassy DVD.

What am i saying - there is only ONE dvd we can have on.


Muppet Christmas Carol.

Nothing else will do, and i love to hear Kermit sing One More Sleep Till Christmas!!!!

You can just see Simba's paws under the tree. So far, the score is

Cats 2 - Christmas Tree 0 !!!!!!

I did say that i might take the tree down early, which brought howls of "but we always keep the tree up till the 12th night!!" Lou usually reminds me that i made sure i got home in time after Peter was born to get the tree down. (not that SHE can remember!!!!)

And the last photo - at George Square - with Rudolph!!  


So, by tomorrow night, we will all be home, getting ready for the day.

Mind you - 101 things to do before that - Lou has work, Matthew will sleep off the 3rd night shift and i think Peter and Callum are going to the carnival. (thanks to some free tickets that Enable gave me!!) Paul might go with them - IF i give him enough money!

Whatever your plans over the next few days, i hope you have a lovely, peaceful time with people you love and care for 

Life is a series of meetings and partings...........

Now, i'm not going to get all Christmassy on you - yet.
But i just thought Tiny Tim's words are apt for my life at times......

Over the years we have had many meetings and partings. 
Some good, some bad and some terrible, but mostly, it has to be said, i have learned to deal with them.
Obviously, we have had medical staff - the meeting with the doc to decided to "diagnose" Peter with a condition he didn't have was not the best meeting. And it was a parting that couldn't come too soon!!!

Genetics and neurology came along. Genetics are still lurking in the background, but the other lot have almost fallen off the edge of the planet!!

The partings i didn't really didn't like were the ones where we had met and built up a trusted relationship with medical or teaching staff.  Then they went off to pastures new. Certainly, in the early days it was VERY hard - i felt often i was left in the lurch and then had to start explaining things all over again to someone new, who may (or not!!) think i was a tad neurotic! 

It was even worse when the more or less told you you WERE neurotic and that your problem was that you had "too many professional friends"!!!!!!

Anyway - our latest parting is Josh.
He's been helping to support Peter for almost a year.
But i feel as if i have known him soooo much longer.
It seems like we've known him forever.
As i've said before, he's very gentle, but always knows just how to push Peter a bit further when he needs pushing. 

Josh has decided it's time to go off to Amsterdam to live and work for a while. He felt if he didn't do it now, he might never. 
So, reluctantly i let him go.

Now, i did consider tying him up and locking him in the garage or the boot of Lou's car, but that would have been a bit much, wouldn't it?!?!

[just agree with me and don't tempt me into ways i can't get out of!!!]

So he's Amsterdam bound in the next couple of weeks.
He tells me of good easyjet prices for flights!
My brain is working overtime - a little trip to the city of canals and trams.

All part of Peter's respite and support of course!!
Mind you - i need to work on the outcomes and state my case!!!!


Mind you, we did have nice meetings and partings as well in the past couple of weeks.
We were off to Skye to meet up with Linda et al and renew our acquaintance with Chrissie and her Hubbie who run the B+B. Chrissie is lovely and thinks Peter is great. If all he wants is sausages and toast for breakfast  then that's what he gets.
And the views out of the window are heavenly. We saw the Cullins with a dusting of snow on top and the trees had hues of browns and reds. I would challenge any artist to capture the scene and do it justice.

During our time on the Island, Linda, Peter and i actually headed back on to the mainland.

The first day we headed to Plockton, a little village. Some years ago, there was a fictional police programme set here called Hamish MacBeth. But it was Jock the dug who always made it for me!! (Jock being Hamish's trusty friend!!!)

Now, if you think Portree is quiet, wait till you visit Plockton.
A smattering of houses, a few little shops and a pub.

Oh, and the main street ends in a dead end.
Only one road in and you take the same road back out!!

But the views across the water...............

We went to the Plockton Inn for lunch and loved it. 

The next day, we headed off to Elian Donan Castle, which inspired the castle in the Disney film Brave. Again, lovely views across the water back towards Skye.  And lunch was good.
I know it always sounds busy when we head to Skye, but it's "good" busy.  We enjoy being with Linda and her family and it gives us a break from our usual routine. At night, before we went back to our B+B, we would go back to Linda's and relax - helped by the bottle of Southern Comfort and the Kimble's goodies!

These kinds of meeting and partings i don't mind - because we usually visit every few months and enjoy. And while the partings can be a bit sad, we know that soon enough, it'll be time to head back.

And enjoy!!!

I'm sad to say.........

..................... The shoes have left the building and gone elsewhere!!

Donna from Enable - she of the fabulous shoes and high heels has left Enable and gone on to pastures new :-((
No longer will i be able to comment on the latest addition to her shoe wardrobe!

It is a sad day indeed.

I'll just need to go to conferences she'll be at and stalk her so i can report back about those shoes!!!!!!!!!

Ah, well, life goes on - but I'm gonna miss that footwear!!

And the results are.......................

......................... 2 lines of letters, numbers, brackets and full stops!!!!

Yes, we were back at Genetics to get the lab results yesterday.
This was interesting, not just because after 22 years they had actually found something  but because the Genetics department has moved hospital! A hospital is being built in the south of Glasgow, on the site of the present Southern General. At the moment it's half building site, 100% working functioning old hospital and a smattering of departments from the children's hospital which will be rebuilt on this site and is due to open in 3 years. (yeah - like we've heard that one before!!!) Oh, and a maternity unit and the institute of neurosciences /surgery!

I had lost the map with the directions, but i knew which end of the hospital site this new super-dooper lab medicine building was at, so it couldn't be that hard to find - could it???

Now, the present children's hospital is soooo easy to get to for us. Cross the road, get on a bus, sit on it for 40 minutes, get off the bus and walk up the hill. It's a journey i've done so many times over the years!
But with the new hospital, i had to walk to the station, wait for the train, spend 20 minutes on said train, then get out of the station and find where the bus is to the hospital and spend another  10 minutes on the bus and even tho it dropped us off in the hospital grounds, we still had to search for where we were going!!

Any way - we got there and waited. Eventually we saw the geneticist and he started explaining the results. For all there is a string of numbers and letters, the basics are this - Peter has a deletion on the long arm of chromosome 4 and some extra material on the long arm of chromosome 15. The karotype (that long list of letters and numbers) give the more in depth details on exactly where the deletion and the extra material is. 

The report said that it would be useful to have bloods from Matthew and i to find out if it is something Peter has inherited from us or it's de novo (just a random happening)

Given that 6 months ago, we were thinking that nothing would come of these bloods, it seems odd to be getting all this done .

I didn't cry, but i did ask the doctor to let the initial guy who diagnosed Peter with Prader Willi Syndrome know that he was talking a pot of crock!!!! And my message was to make sure he thinks about what he's going to say to parents before he opens his big mouth!

More bloods taken and to my amazement, Peter decides to have one of the funny little episodes he's been having for a while. For a number of years, he's had vacant episodes - they generally don't last long and you can normally bring him out of it by saying his name or asking if he's ok. But for a couple of years  he's been having them and talking away to himself and laughing . We just thought it was "just Peter" until one of his support workers mentioned it a couple of months ago.

I started to describe all of this to the doctor and Lo - he starts on one of these episodes!!!!!!! Man - i've only been tearing my hair out for years over this to be told nobody else sees it, and BINGO - right on cue, it happens!
So we had a discussion about the best person to get a referral for. We're thinking maybe a Psychiatrist who deals with people who have learning disabilities. 

So big deep breath - got to see the GP to try and sort that out.

And send a copy of the report to Unique to see if anyone who has the same or similar Karotype.

And filling out the forms for DECIPHER, which is a world wide database of chromosome abnormalities, so that if anyone else comes near or matches, we can find out more.

Meanwhile - life goes on as normal.
The world hasn't stopped and we haven't fallen off the edge of the universe.

And hopefully, it won't take another 22 years to get more info!!

Back at the haven again.........

............Yes, we were back on Skye again last week! I don't think i realised how tired and stressed i'd been and really needed time to slow down.

We had made a few plans before we went up. Maybe back to Dunvegan Castle. And go round to Staffin.

So off we went on the tuesday morning. Mind you, Peter had the beginnings of an infection in his toe and i don't think the journey on the bus did much good. (we could get to New York quicker than we got to Portree!!!!)
Linda met us and we headed off to pick up the fish and chips she'd ordered and then home.

We were all so hungry that the eating was done before the unpacking!! 

Mind you, when i did unpack, Linda was laughing at what we'd brought up. Half a ton of dishwasher tablets (all of them bought on special offer), food for John and Gerry the cats, coffee (special offer in Costco), 2 bottles of Southern Comfort and the Kimbles chocs. (the partridge and the pear tree are being taken next time!!!)

After having a look at Peter's foot, we decided that he really needed to go to the GP, so that would be organised in the morning.

Wednesday was our "lazy" day. Appointment made for the GP, we stayed in till lunchtime and then went off for our lunch. Then shopping then the doc. Toe infected and some heavy duty antibiotics. Poor Peter - by this time he was limping about and not feeling too good.

Thursday saw us go to Staffin - there is a Charity called Columba 1400, who have a base in the village. They work with youngsters who may be vunerable, leaving care, isolated - and others. They try to help build up confidence and give them ways of coping and getting on with life. The building itself is lovely and welcoming. We had a look around inside and out and then decided to have lunch in the cafe. Gorgeous views out of the windows and even more gorgeous food to eat. And it tasted so much better because all the profits go back into the charity to help more youngsters.

Evings - if you've read my blogs before - are spent chatting at the kitchen table and putting the world to rights. With a liberal dash of something alcoholic and some chocolate. It doesn't get much better. Peter enjoyed Lachie's company and they watched DVDs and fav programmes.

Thursday we went to Dunvegan Castle. I'd always loved the story of the Fairy Flag when i was young. And Skye and Dunvegan seemed so far away from my life in the city. So it was good to go back there again. Flag still there. And Prince Charlie's waistcoat still there. And we still think he was a bit of a soft looking wimp!!! It was only Flora who saved him!!!!

As usual, our time flew past. I wanted to stay, but the thought of the 3 humans and 2 cats pining for us at home made us get on the bus!

As if - pine for us?!?!?! they prob did all the housework in the hour before we got home!

We are going back mid october. So i didn't feel too bad about leaving this time. And as usual, we have more to talk about when we go.

So i feel rested and refreshed. 

Now all i have to do is the last of the financial management plan and send it off.
And pin Lou down to a day she is off so that the Social Worker can   visit. Not as easy as you'd think - Lou has a crazy rota, so after finishing her night shift tomorrow, she's off for a week. But the SW is duty worker next week, so can't really go out much. Then Lou has 2 weeks induction into life that is PICU. (basically you don't have much of a life for 5 weeks out of 6, then you sleep for 6 days and it's time to go back to work!!!) We're thinking the 3rd of october. Yes, nearly a month away.

Trouble is, i'm not sure if it's october 2012, or 2013 we'll be having this meeting!!

Off to our own GP in the morning to get the toe checked. Think more antibiotics will be needed and maybe a referral to get the toenail sorted.

Back on that roller coaster.............

....................And I really DO want to get off.

It has been a fairly crazy few week chez Johnston.
Nothing big or life threatening, but a million and one small things all happening at once, or at least, one after the other.
Now - if it was one BIG thing i could cope, but not a run of small stuff.

It started just over 3 weeks ago. Long story short, we decided to get another cat. Were going to adopt one, but due to circumstances it didn't happen. So Lou had a look on Gumtree, we found a kitten and got in touch.
Next morning when we got up, turned on the laptop and found it had a virus and the firewall was denying access to the internet.  
So off we went to pick up said kitten (went well ) and go to buy new litter tray plus kitten food.
On the way home, it rained so much, i thought we were sailing back up the motorway!!! Got home and Lou went to get my friend May to let her meet the new addition.
By the time may went home, i was wondering if we'd done the right thing - hissing and growling a plenty and litter trays at dawn .

Sunday morning got up. Cats still alive - the had been kept in separate rooms!! And then i found a note from Paul - the washing Machine seemed to be having problems.
Oh and on top of all that, i got a form about one of Peter's allowances, to be filled out to see if we could still get it.

Monday was spent phoning - vet insurance, wet and washing machine man. Needed him most!!!
Tuesday, the vet - to find out that our "she" was a "he", so not only a sex change, but on to our 3rd name in 4 days!!!! The cat is now called Simba!

Wednesday took us to the Enable office  to get help with the form and on to Kimbles for hot choc!!!

Thursday the washing machine got sorted.
Then the postman arrived with a letter. From Genetics. Results. 

It seems that Peter has a deletion on chromo 4 and additional material on 15.
At the moment, i'm not quite sure what it means, but i'm made another appointment with the clinic, we've waited 22 years - another few weeks is nothing.
went shopping with Lou later. We had to pick up a dress in town. Alas, on our journey, we had a bump in the car. Bolshie woman in front who told Lou to get outta the car in the middle lane of the M8!!! I didn't see her gesture, and if i had, Lou would have been told to stay put. Woman was very intimidating and very loudly told Lo to Come see what you've done and demanded her insurance!!! Luckily the police arrived and told us to move over to the side.
Poor Lou - this wifie's car had one scratch. Lou's had a bashed in grille and a smasshed up reg plate. But she insisted on getting the dress!!!

Friday - well, trip to the Docs - Lou was very shaken and when i explained to the receptionist, she said she'd get the GP to phone me. He did and said to bring her up. He was really good . Calmed her down.
Can i just say here - our receptionists are always really good and they KNOW i don't call for   just anything. And they listen to me.

Insurance was phoned and most of the rest of the day was spent talking to folk about the car or taking it to the garage to get the estimate. Mind you, as we were about to walk out the door, the social worker phones - he times it right - last time he called i was mopping up hairballs and trying to load up the washing machine!!

And so our days went on. I couldn't get a self referral for physio for nearly 2 weeks after the bump - told them to forget it, if  i was headless by then, i'd deal with it.

Mind you, for a couple of nights after the bump, i'm sure Usain Bolt was celebrating at the top of my spine and across my left shoulder!!!


A few other piffling things happened and i nearly decided not to head for Skye.
But we're going.
In the morning.
I NEED THE BREAK!!!!

Mind you, we did have something nice - i met up with some of the Unique families again - we went to kimbles and had a nice afternoon. A couple of families we hadn't met the last time were there and it was nice to meet them.
I had to giggle at one of the Dad's - we were chatting and Lou was there and said something about working in Sick Kids - the dad said "oh, i thought your face was familiar!!
This was Lou minus the uniform and with her hair down!!! 

So i'm away to pack the last of the stuff and get myself to bed early (which means it'll be about midnight!!).
But first - a strong drink!!!

All Quiet on the Eastern Front............

...................I should actually know better by now than to say that things are quiet in my house - it usually means something is a brewing up and will most likely blow in my face some time soon!!!


The boys had a good time at Kielder again this year. Canoeing, sailing, zip wire - would have been nice to see all the photos - if some little toad called Peter hadn't decided to delete some of them!!! So NO photos of the visit to the Birds of Prey Centre.
Thankfully, the one of Peter holding the Olympic torch was still on the memory card. I would have been gutted to be told he got to actually hold a torch, then not to have seen it. One of the visitors to the centre had carried the torch thru Perth a few weeks ago and brought the torch to show everyone. 
Something for the scrap book me thinks!!!!




Mind you - getting the boys home was a bit problematic. There had been horrendous rain and landslides on the track between Newcastle and Edinburgh.   
Much phoning and trying to explain to the guy from the train company that my boys WERE booked on one train(which he said didn't exist!) and asking if alternative arrangements were being made............. I decided to ask Lou if we could drive down to meet them.
The centre said that they would bring them up to Gretna, which cut an hour off out journey. We met them at the Outlet Park.
Shops.
Clothes
Mum's credit card if needed - what more could a girl want?!?!?


We decided to get something to eat (total rip off, as most places just off motorways are). Paul was grumbling that he was tired and really just wanted to get home and go to bed.
Lou told him NO WAY!!
If she had drive nearly 90 miles thru rain and spray from Eddie Stobart trucks, she was going to take advantage of SHOPPING!!!!


We did buy a few things - best bargain was a Gap zipper for Peter - £20 instead of £35.


And some chocolate from the Cadbury shop.


We eventually got home and i spent the next week wading thru washing. Fun!!!!


This week it's Matthew's turn to be off on adventures. He's camping on Skye - near Portree. Linda met him on monday when the bus arrived in town and promptly dispatched him off to the camp site with Harry, our taxi driver. He promised Linda he would phone and arrange a time for meeting up for lunch. 
That will raise a few eyebrows in town - Linda - with an unknown man who got off the Glasgow bus!!! My but isn't she a hussy that one!!!


Heck  i'm not saying anything here i wouldn't to her face! The only thing she said was they wouldn't go to Marmalade - she's been there twice in the past week with friends, so a 3rd visit, with a guy would really cause heads to turn!!!


Matthew is home on Saturday. I think he's been having a good time. Weather has been good and he's done a fair bit of walking about that part of the island.


Meanwhile, i'm meant to be working on a financial inventory and management plan for Peter's guardianship. Oh man - it's like losing the will to live - slow death by paperwork. Luckily, i can print off bank statements from the internet, but i need to get letters confirming how much he gets in allowances. Those phone calls are done and i can just print off what i need when i get it all together. But the management plan is so much harder. We have to account for what his money gets spent on - not piddly little things, but if i buy clothes or stuff - we have to show where his money goes. I can understand WHY, but i'm not an accountant or auditor. I have a couple of questions i need to phone and ask about, so that is on my "to do" list for next week


Next month, Peter and i are going back to Skye. I can't wait - a few days to relax, chat and just enjoy. I have been stashing away contraband!!
Ohh - that makes me sound dodgy, doesn't it!!


I have some posh nosh for the cats - the applaws food that seems to go down well. And some other food called Purely - Lilo enjoys that, so i thought i'd get it.


Fairy Platinum dishwasher tablets, to give said machine a treat!! Well, it's used to the Co op own make stuff, so it'll get a thrill! 
And of course - the Southern Comfort.


Tea bags and good coffee also stashed away and Kimbles choccies will be bought!!!


And the dealing with Peter's support is ongoing and booking some respite with the animals is  a must  - i may book myself in. Log fire, e reader. Cup of tea. I'd be happy!!!


So, actually, it's not been that quiet. But for once, nothing major, no tantrums, no fights, no bodies to be disposed of in the recycling bins - for now!!!

Control Freak Worry Wart Mother

...................Has escaped from the cupboard under the stairs!!


She promised me she would be good.
But as Mary Poppins would say - a pie crust promise - easily made and easily broken!!!


The boys are away to Kielder again. 2 1/2 hours on the train, then getting picked up at Newcastle.
I am a tad annoyed this year.
We decided to book Journeycare, so that the boys would be helped off the train at Newcastle, the staff are meant to come and help them get the luggage and off the train. No one arrived. Ok, i don't need to PAY for this, but i decided to book it after the hassle last year at Newcastle coming home. Train running late and rude staff ignoring Paul's request for help.
Will be doing something about that at the weekend when they get home.


I'm also a bit annoyed at the pick up to get them to the centre. I phoned on saturday morning to let them know what train they would be arriving on. I was rather surprised that they hadn't phoned earlier in the week - they did last year.
 At first, the girl said they weren't on the pick up list.
I asked her to check, cos i had booked it (and paid for it!!)
Oh, yes, she said - they weren't put on the list.


She said that the pick up from Newcastle was 1.30 - i explained that the train didn't get there till 1.35 - it was the same train they got last year.
She said that it would be ok, since someone else was getting off the same train and that the pick up would wait for them all.


So Paul phoned to tell me they got to Newcastle ok and about the lack of help off the train. They were waiting at the pick up point.
And no one arrived.
So an hour later, he phoned me.
I said i'd phone the centre, explained the situation and she said she'd try to sort it out.
Try??? My boys are 150 miles or so away from home, i have no way of getting to them and you are gonna TRY??? Eventually she gets back to me and asks if i have Paul's mobile number - gave it to her.


A while later, Paul phones - they are going to get picked up at 4,30 - 3 hours after the original time.
Paul phoned tonight - he told me that they had said they had been at the station on time, but they were not there!!! Peter and Paul). No thought to finding out if their train was on time, or putting out a call.
Now - i know they have a timetable to keep to, but puleesssseee - a bit of sense goes a long way.
SO yoiu can imagine worry wart mamma  by now - stress thru the roof!!


Promise, she is getting pushed kicking and screaming back into the cupboard ASAP!! If not sooner.


And don't get me started on the SAGA of getting Lou's car fixed , which has now put the kybosh on any plans we may have made to do things over the next few days. It was eventually delivered to the house about 5pm - they had suggested her work, but at that time of day, you'd need to have hiking gear to get from where you left the car to get to the hospital!!! And that's on top of the phone calls they'd need to make beforehand!!!


The only good thing is, i managed a long lie this morning. It was nearly 9.30 before i got up. Mind you - the cat was in a double sulk by then - missing the boys and starving!!!!


Mind you - our days have not all been like this!
On the 16th of June, i met up with some of the families from the support group we are in (Unique). Just before Christmas, i met one of the mums. We started kicking an idea about meeting up and having a chat.
So i posted on the Unique FB page and wrote a bit for the newsletter.


2 or 3 people said it sounded good.
Then a couple of emails.
Reminder just before the day.
So in total, 16 of us met up at the Art Galleries here in Glasgow. A couple of families had to drop out at the last minute and one family we missed tho i'm sure not by much.


We sat behind Sir Roger the elephant and beside the Giraffe. Had a great time, chatting, delving into our packed lunches, watching the kids enjoy themselves.


Then a typical jobsworth came over and told us "you're not allowed to eat here". Mmmm - did our sandwiches offend him? Did we have better fare than him ?(most likely). Was he jealous that our company was having more fun he and his mates could ever aspire to? (probably)
Maybe he thought we'd feed the elephants and giraffes!!
Can we tell him something - said animals are DEAD and STUFFED!!! He wouldn't need to clear up after them and he didn't need to after us - we took our rubbish with us! (tho i'm sure the giraffe had a longing look at the choccie biccies i had!!)


We went to the slightly posher cafe downstairs - mainly because it had more room and continued our chat.


The bit i loved was Peter with Morven - Morven is 5 and was gooey eyed at Peter - SOMEONE LOVES MY BOY!!
Or it may have been a look of sympathy that said "poor you - having a mum like her!!!
But it was a good afternoon and one which we have all said we should do again

Back in the grown up world again.....................

................... And a little funny football story, just for Jazzygal!! 


But more of that story in a bit!!!


We had our day in court for Peter's Guardianship Hearing.
All the reports had been submitted and considered and we had to go along to see what the Sheriff would say. We had asked for a 10 year order for the Welfare part, which we were confident we would get and 5 years for the Financial element, in the hope that he would maybe, possibly give us 10 years.


So we arranged to meet the Lawyer at court. We were a little early and had a giggle at the Lawyers going around with their gowns on!! Last time i saw that many gowns was @ Lou's graduation!!!!!!
Lawyer arrives and told us where we were going. She said she would meet us outside the court, telling us she was going off to change her shoes - there she was, smart suit on and trainers on her feet for comfort!!!


That's my kinda girl!!


The actual hearing doesn't last that long - about 10 minutes, because the papers should have been read thru by the Sheriff beforehand and he should have come to some sort of decision. But he just wants to hear for the Lawyer and sometimes the people making the application.


So Lesley was up giving our info, explaining why we wanted the additional powers, i explained that the financial side would be helpful if Peter was ever to be in his own place that we could sign tenancy agreements for  him.
So the judge said we had welfare AND financial powers for 10 years.
I said nothing going outta court, because i really wasn't expecting to get both for that length of time. I looked at Lesley and said "he DID give us BOTH for ten years??"
Yes - he did, She thought that since there had been no problems for the past 5, that it would be ok.
Well - no probs except for Social Work and i suspect that at times, our legal system has given up with them!!!!


Now the fun begins.
We have paperwork to fill in - a financial inventory.
We have to state how much money Peter has, what he gets in benefits, how much he spends on clothes per year, presents, if he gives us money for gas/electricity and so on.
We have a couple of months to get it filled in and back.
I now find i have to account for money that we spend - not on little things like bars of chocolate, but if we buy clothes, dvds and so on.........


Will just need to get used to it!!


My other foray into grown up world was another conference.
Peter and i going off and telling the known world about his support...........


It is good fun, but man - if i see that dad again - i'll scream!!! I am getting better at listening to myself tho. Jenn was away on holiday this week, so Caroline was doing the presentation with us. She thinks she was rubbish, but she was good. And i'm getting a bit blasé!!  I told them to sit down the front, cos that was where i'd left the rotten eggs to chuck at us!!




So now on to the footie story!!! Jazzygal blogged about how she had been converted to football many years ago. I told her one story about my youngest and football (who remembers the Scotland v Brazil Match at the World Cup in 1998??? Yes, us gallus scots in the opening match - with Brazil and we were gonna hammer them!!! Well, if cheers and faces painted with the Saltire and thistles were gonna help we would have trounced them - but we didn't!!)


Any way -fast forward to 2010. 
Me, Matthew, Peter and Paul in Barcelona for a long weekend. Barcelona, like Glasgow, is a football mad city. Bars were packed to watch the World Cup from South Africa.
On this particular saturday evening, Spain were playing. We went off to have some dinner (and watch the match!!). After, we went for a walk to find the place we were meeting our tour bus the next morning. You could here the good natured shouts from the pubs and at one place, there was a guy, who i swear was the human version of Sleepy from the 7 Dwarfs!!! He was small(ish) maybe about 5 feet 4 or so, typically spanish look guy, maybe in his late 50's.
But the best bit was, he has a furry halo on his head!!! Now, i'm not sure if he was a bit tipsy and didn't realise he was wearing this creation, or if he had worn it for a dare, but he looked lovely!!
Out of the corner of my eye, i saw a rather tall person, dressed up as Snow White.
Maybe, i mused, that in fact, this was sleepy and the other dwarfs were inside the bar watching the match!!
I said to Matthew and the boys "that was Snow White wasn't it??"
Matthew replied that he suspected it was a GUY dressed up!!!


Well, each to there own - but more unusual than a match at home!!


On our way back to the hotel, we ascertained that it WAS a guy dressed up. Matthew and I laughed as he blew a kiss to Paul!! YOu can imagine a 17 year olds response to that...................


..........................Yeah - legged it back to the hotel quick smart!!!!!


My only gripe was that the guys legs looked much better than mine and he walked better in high heels than i ever could!!!!


We went to the Bar in the Hotel to watch the last moments of the match. I think only one other girl was in the bar with me. There was a collective groan from about 40 guys as one player kicked the ball and it landed between another player's legs. Just at his groin.
An even bigger groan went up when they saw the slow motion playback. This other girl and I just laughed. 


Oh - and Spain won that night. 
We went on to the rooftop terrace on the hotel and even half an hour after the match ended, there were people out on the streets celebrating.


But you're still not going to convert me to footie!!! 

Houston, we have a ....................

........................ Named Social Worker!!!

Now, please - don't all fall off your seats laughing!! He does exist and i have met him!!
We were meant to meet him on the 11th, but i got a call to say that he wasn't well and wouldn't be able to get to us. My thoughts were "here we go -again!!". Been here, done that and we're always let down.

I was told he would phone on monday to rearrange.
No - i didn't stay in all day - i do have a life! Maybe not exciting or high powered, but it is MY life and i quite enjoy it, thank you very much!!!

Monday came and went - no phone call.
So did Tuesday.
And wednesday!!!
By this time i was getting a tad fed up. I grumbled that i always had to chase them up and i didn't really have the time or energy to do it.
So Thursday comes along and i planned to phone them at some point.

But you know how the day goes - you get caught up.
So the phone goes - right in the middle of me trying to clean up the cat sick and load up the washing machine.
It was the Social Worker!!!
Couldn't have timed it better if he'd been watching me!!!!

When was a good time to come out??
"never???" came my hopeful reply!!!!
Well - there's me, up to my elbows in cat vomit and dirty clothes - it wasn't a good day and we still had the vet visit to do.

Ok then - what about tomorrow morning about 11 - is that ok??
It was.

Man - he must have wondered just WHAT he was letting himself in for!! Scary situation, given that the last time we saw each other we were 12 and it was the last day of Primary School!!!!

It wasn't that bad to be honest. He did apologize for his no show the week before. We sat and went throught the guardianship order we have just now and what we have requested for this one. He did admit that the SW department had been very lax about keeping in touch and he couldn't understand WHY the duty workers hadn't been concerned - especially when we were always flagging it up to them. They seemed to think because we were "coping" they didn't need to come and see us.

So he's coming back to see us in 3 months, when we have the new order in place.
Court is the 7th of June.
(that'll be another experience!!!!)

So that is now done - and if he even THINKS of leaving the job, or dying in post, he'll need to get my permission and make sure a new SW is appointed before he goes!!!

The nice bit of the week was getting paid for doing the presentation in Aberdeen. We'd already been paid for the Glasgow one, and we had happily spent the money!
So i have ordered some new DVDs - Titanic - the 4 part series that was on tv recently. And Merlin series 3 +4. I also bought myself new jeans. Yea!!! new jeans that i like, that fit me and i had the money to pay!!!!
Peter has his eye on a Dumbo ornament. I think i may take him to get some new jeans as well.
It's been nice to have a little bit of unexpected money. Peter would have prob got some of the ornaments for christmas/birthday pressies, but not all of them at once. And much as i try to save some money to treat myself to DVDs once in a while, often the money gets spent on something else.
So along with the Merlin DVDs, i have Les Miserables and War Horse to watch as i do my ironing.
Should keep me happy for a while!!!

Calm after the storm!

It has been reasonably quiet this week.
Tho please don't tell the "keep Julie busy Gods" - i'm enjoying catching up on my sleep!!!


We did the presentation again at the Enable Conference on Saturday. It was at Stirling University and again we had a good time.
Peter and i joined in another workshop - about labels. We had to think about getting rid of negative labels and think of new ones that were positive.
We had to decorate a t shit with our positive labels - some of the t shirts were brill looking and even in a short time, there were loads of positive things.


And our presentation went well - i think!!!!


So i've been catching up on sleep this week.
And waiting for the social worker to phone me to rearrange his time to come and meet us.


Mmmmm............... he was meant to be out last friday, but didn't come. To be fair, we did get a call saying that he couldn't make it and he would phone back on monday.


It's now wednesday evening and no call.
So i may call tomorrow to chase them up.


So to cheer myself up, i baked some cakes and scones this afternoon.
Well - it was that or do the ironing!!!
So we have some cherry scones and some cupcakes - yum!!!

Give a girl a good pair of shoes...........................

.........................And she can conquer the world!!!!


Well - it's true girls isn't it?!?!?!


I'd better explain myself.
I've been back in the world of the grown ups again with Enable, doing another conference.


 It was in Aberdeen this time.
Peter and I travelled up with Donna on Tuesday late afternoon.
Yes - Donna, whose shoes are often mentioned in my blog, so i suppose the title of the blog is really a nod to her and her shoes!!!


Told ya the shoes would get a mention Donna - and nice ones they were, but we did get a few crazy looks when we were having this conversation!!!


Anyway - we had a good journey up and had decided we'd have dinner with the others who had arrived there earlier.
Mind you - we nearly brought  some road kill for dinner!!!
Man - pheasants and pigeons - must be the ditsies of the bird world!!!
A pheasant decided to fly low over the road as Donna was driving and we nearly killed it!
Then a pigeon flew outta nowhere!!
I could just picture the scene at reception.....................


Two rooms and could the chef please prepare these birds for our dinner?!?!?!?


Dinner was good. We sat and decided what we were going to have. Some interesting choices.
I opted for Smoked Wild Boar for my starter.
Well - i've never tried it, so here was my chance!!!!


Later on i texted my friend Sue (who was meeting up with us in the morning) to tell of my choice of starter.


Her reply  wondered if i'd had half a woolly mammoth with a side order of sloth for my mains!!!!
You can tell we have watched too much Ice Age, can't you!!!!


Back in the room, Peter enjoyed watching UP on the dvd player we'd brought and eventually we decided we needed sleep.




Wednesday morning after breakfast we went to the main building. Peter and I decided to give the first part of the day a miss so we could catch up with Sue. We haven't seen her for ages and it was nice to sit and catch up. E mails and letters are nice, but there is nothing to beat sitting with a cuppa and having a chat. 
Sue came to our 1st workshop. It was nice (but a bit nerve wracking) having someone who knows me well sitting there listening to us. But she said it was good and she enjoyed watching the DVD and putting faces to some of the names we have mentioned.
Alas, Sue couldn't stay for lunch - she had to get home, but it was so nice to have the chance to catch up.


2nd workshop went well, but Jenn and i were a bit stunned. We'd either managed to answer all their questions in the presentation, or it had all gone over their heads - nobody asked anything at the end!!!!
Even now, we're still not sure!!!


3rd workshop good and then time for tea.


Now - what i didn't tell you was that more people came along than expected. That was great, but the team didn't have enough of the packs. Donna took mine off to photocopy - i actually told her to keep it as long as i could at some point get the info for Sue to pass on to people.
During the day, a couple of people came to me asking about packs and if they could get one. Eeeekkkkk - maybe they thought i was gainfully employed by Enable!! (sorry if i lowered the tone girls!!). But i managed to direct them to someone who might be able to do it.


A guy came over to me at the tea break and asked if i had a spare pack. When i said no, he asked if i could get the stuff to pass on, so i got his address. He chatted away, but really, it seemed more of a rant about lack of services and money for services. But since i've been in that position, i just lent him an ear, because people have done it for me.


So we went off for our Q+A session.
This guy gets up again and has a bit of a go. (well - a LOT of a go)
He, to be honest, was howling a bit at the wrong people. We were on his side!
He complained again about lack of money for services for people with Learning disabilities. There was one guy there representing the council, but he wasn't a politician - he was a council employee. He did try to explain a few things,but it didn't seem to wash well with the ranter.


Couple of questions later, he was up again. He said it was alright for us, coming up from Glasgow, where there was obviously loads of money   for SDS, but didn't we know that Aberdeen spent all the money tackling drink and drug problems?!?!?!?
By this time i was MAD. I had been patient with the guy. I had told him earlier that this was not a political event and council employees are often as fed up as those who care for people with disabilities . I said we really should keep on track


Mind you - for one who could rant for britain and get gold, silver and bronze solo, hands down, this cause a few chuckles from the Enable team!!!


But by this point, i just about pulled poor Donna's arm out of its socket trying to get the Mic!!!


Did this gut REALLY think Glasgow had more money??
Did he think we had no problems with drugs and drink???


As we say in my part of the world AYE RIGHT!!!!!!


If we really had the money in Glasgow, why then did it take me soooo long to get services for Peter??


The grass isn't always greener!!


I wondered if he thought that the streets of Glasgow were paved with gold.
No, Mate - just streets littered with roadworks for the 2014 Commonwealth games.


That's where all our money is going!!!


Meanwhile, up at the back, Laura and Jenn were wonder just where all this had come from!!! They're used to me being,well ,not really prone to outbursts like that with people i don't know!!!!


So the day ended and Jenn got Me and Peter home safe.


Knackered mind you but safe!!!


No almost road-kill, but we did see a guy paragliding close to the roads (don't know that paragliders are really all that tasty! Think i'd prefer woolly mammoth!!!)


And a great conversation about what we thought a cloud looked like!!!
(An anvil with a large snail stuck to the side!!)


Now do you understand why my blog is called My Crazy life?!?!?!?


Grab my hand and enjoy the ride with us!!!!

T'was the night before.....................

....................... Well, not quite Christmas, but a trip to Aberdeen to help do our presentation on Self Directed Support and the Family.


We did this presentation a couple of weeks ago and it seem to go well.
I think most people enjoyed it and i even managed to answer some questions and sound like a normal human being!!


(me - normal? Nah - who wants normal!?!?!?)


So this time we're heading off to Aberdeen and staying overnight.


Our bag is packed and if Lilo the cat lets us, we will set off tomorrow afternoon.


Lilo has a habit of sitting on bags you have packed.
Almost like "well, if i'm sitting on it, they can't go".


The logic of cats - wonderful!!!


As for Matthew, Louise and Paul - well, they tell me to take our keys, lest they are not at home on Wednesday evening when we get in!!


At last - i have found out who really loves me in this family - the cat!!
But only because i feed her and clean out the piddly bits in her litter tray!!!


I had so many plans of tidying up this weekend, but never quite managed it.
Paul's birthday yesterday. Then Lou and i escaped to go shopping for a  while.
Home to order pizza and have birthday cake.


Then today Lou and i went to our friend Lorraine's house. It's her son Jamie's birthday today, so we headed there with pressies from us. It was nice to catch up with them.
Then home to pack our bag, make sure my phone and e reader are charged, Peter has new music on his MP3 player............................


The plan was to have an early night, but i can't see that one happening!!!


Ah well - i will let you know how it goes!!!

Karma................

............................What a wonderful thing it can be!!


And even better if i get to watch it bit at someone's rear end!!!


He he he.................
The continuing saga of our journey to get a named Social Worker for Peter. After "getting" the Deputy Director of SW services last week, i got a call last friday from a team Leader at our local SW office.


(he must have done the optional module on "making phone calls"!!!!)


He was profuse in his apologies about the hassles we'd had. He said that the other Social Workers we had spoken to should have taken matters more seriously, especially when we started mentioning legal stuff .
He gave us the Council policy on overseeing Guardianships - we SHOULD have had a named contact and they SHOULD have been in touch at least once a year, possibly twice. (I KNEW all this - and i don't have a SW qualification - how come they didn't?!?!)


Anyway - the outcome was that we were to be assigned  Named Worker within 2 weeks  and i had this guy's name and number if things went pear shaped - again!!!


Yesterday afternoon, i was getting ready to go out to vote in the local council elections.
 The phone rang.
 The voice at the other end introduced himself as our named worker and told me who he was.


 My brain was busy taking in this info as he talked.


 Then i realized that i KNOW this guy!!


  SO i stoped him and asked if he had been to the primary school i went to.


    Yes, came the reply.


   So, i said, you should remember me - and i told him who i was.


       EEEEKKKKKK - He DID remember me and then said that he remembered his brother (who worked at the primary Peter went to) telling him we'd met.




See what i mean about Karma!?!?!


Mind you, time will tell how it goes. 
He's coming to visit next friday.


Heck - they can wait on us for a change. And the next few days are busy. Peter and i had the dentist today and i had an ASDA delivery.
It's Paul's birthday on sunday.
Tuesday we're going to Aberdeen  and doing our presentation on wednesday.
Thursday is art class


As i've been writing, i've had a call from Jenn to fill me in on arrangements for wednesday. 
Sounds like a good time will be had.
And i've promised Peter we'll take the dvd player and some dvds to watch in the evening.


But before then, i have Birthday cards to write, pressies to wrap (not for Paul, but my friend's son whose birthday is on monday)
Goodness know when he'll get the pressie, but he WILL get it.