Tuesday, 26 October 2010

We're going to London to visit the Queen!!

Well, not quite visit the Queen, but a Lunchtime Reception & Recital @ the Speaker's House!!

Paul and i have been invited to this reception because he did some filming for the BSA a few years ago. He was very confident doing it - unlike me who was a gibbering wreck and can't even look @ the stuff i did to this day!!
But then - that's my boy - Like his brother and sister, surprises me all the time!!

So we fly down on the morning, get into London and to the Speakers House.
There are a few things i'm concerned about - Like - will they actually let me in??? Or will the Seargent at Arms tell me in no uncertain terms that i'm trouble and not getting in???

Should i ask John Bercow if his bidey in wil let me have a few inches from her legs so that i don't look midget like beside my children!!!

Will Ed Balls cope with someone like me who could take on ancient warrior queens and attila the hun and eat them for breakfast?!?!?

What will David Cameron say if i tell him i'm a feartie to walk down Oxford Street in case i get mugged???
Well - i have done Oxford street and the only mugging that ws done was to my credit card by Louise!!!!

Oh the joys!
Paul has told me he is not standing bail money for me - most likey he will be in the cell next to mine!!!

Seriously tho - i'm looking forward to the afternoon - it will be an experience!
And i promise to behave.
Well - a bit!

Friday, 22 October 2010

Stammering Awareness Day

Today is stammering awareness day.
Now - I know for most of you, this means nothing, but when you live with someone who stammers, it becomes important that others are aware of how they treat the person who stammers.

To be honest, i came as a bit of a shock to me that Paul had a stammer - Peter's issues i could deal with because they'd been there since birth, but to suddenly (or maybe not!) have to deal with a child who was stammering - i wasn't quite sure what to do.

Eventually, we requested a referral to speech therapy, since it was obvious that things were not going to get better on their own. I asked the ST @ Peter's school for advice on how long I should wait before we did the referral and how i should deal with it.

Time went by and still no date for an appointment. So, i got the number for the ST's @ Yorkhill. Liz must have wondered what kinda madwoman i was, but thankfully she DID listen, made sure Paul was on the right list for an assesement and eventually we saw someone.
By this time Paul was primary 6 and i was well aware of time marching on and a move to secondary @ the end of P7.

Now - i won't go into boring details, but the next few years involved therapy, being part of an honours student's project, going to BSA family days, being involved in filming for the BSA, having strategies in place and just generally getting on with ,well, life.

The filming was great (but i still cannot look @ myself!!) and it was great for Paul to be involved with this - at last - HE (and others) could tell teachers and other kids just what it was like for HIM. He wasn't stupid (if anything he's one smart cookie!) and he could do things a lot of other kids his age couldn't.

Working out the Harry Potter Theme tune without the music in front of him for one! (and i just thought this was "normal" for a 10 year old!!)

One thing we found brill was the communication passport - it meant that Paul could let his teachers and support staff know about his stammer and how they could help. Some teachers thought it was great, others a bit iffy, but no one ignored it! We made sure!!

Paul amazed his teachers by volunteering to speak at assembly and getting involved in school life - i think they were expecting a shy retiring wall flower!!

One thing my son does NOT do is shy and retiring!!!

Paul was discharged from ST and we were told if we needed them again, to get in touch. We had to do this as Paul moved up the school - about 4th year he was finding things hard again, but the ST gave him strategies to help again  and we dealt with it.

So now  - well we have a young man who has a good set of standard grades and Highers behind him. He's doing 6th year and planning to go to University to study music. One of the things that i think has kept him sane is the fact that he is GOOD at music. He has played 3 times in the Royal Concert Hall, taken part in workshops and a concert with the Band of the Royal Marines and had a great week of work experience in the local SEN school working a couple of days with the music teacher.

Yes, we have idiots - mainly adults who think it is ok to finish his sentences for him. He did take a teacher to task recently who wasn't too happy when he did. But my thinking was Act you age not your shoe size! She's known Paul for years - maybe time to revisit the passport and the "give me time to speak" rather than just think he's being cheeky.

If someone you know stammers, take time to listen to them - you'll often find that they have something good to tell you! (think Churchill and Issac Newton!!). As if there is anything you can do to help support them - but puleeezzzeee - don't patronise them. Sometimes it's just something simple that will help.

And thanks to Liz, Eilidh and Morag who all at times have been on this journey with us and have helped Paul and dealt with the maddie who is is mother. I'm sure the years of therapy they will need to help them overcome the trauma will help.

And me - i have a great son and to use the words of Chris Rea ............"who needs to dream when you know you can fly?"

Wednesday, 20 October 2010

Children - i do love them, but i couldn't eat a whole one!!

As i say - couldn't eat a whole one!!!
We've had minor skirmishes about DVDs today and which ones Louise and Peter should watch.
Now, be mindful of the fact that it would be easier to deal with Attila the Hun , Ghengis Khan and Bodecia on a bad day than to let them choose a dvd they both want to watch!!!
No Thomas (I'm not watching 4 ours of that sh^te says Louise)
No Friends (that's rubbish says Peter)
No Scoobie Doo says Louise.

Well Scoobie don't i feel like shouting!!!

So out came Beauty and the Beast, the video went on and strange noises were heard. The video of B and the B had just died!! Thank goodness it comes out on DVD in a couple of weeks, else i'd be up a creek without a canoe never mind a paddle!!!
So on my HMV to do list is that DVD plus Sabrina the teenage witch,
The joys - see what i mean - i'm almost forced to eat them!!!

So the agreed on the Little Mermaid.

Mind you, Peter has just asked if he can watch Muppet Christmas Carol.
Now - i do like the film, but in october - with more than 2 months to CHristmas???
You can take things to a point of fetish quite easily!!!

More phone calls - had to phone the team leader today - she has identified another couple of workers for Peter which is good. So we'll meet up.

And a phone call about flights for me + Peter. To London.
Mmmm - can't say too much just now - the fights have been booked, but our official invitation hasn't been sent out yet.
Got you wondering???
I'm just wondering if i'll actually get into this venue and not get left at the door heckling with Paul denying any knowledge of who i am.

Monday, 18 October 2010

Our 1st lot of respite

The good thing about the self directed support is that we can arrange respite to suit us and Peter.
Don't get me wrong, the respite unit was great and Peter loved going there, but quite often you just have to go along with what everybody else wants to do, even if you don't really fancy it.
Now various things were mentioned (Blackpool and caravans!) Both great holidays, BUT i was sure we could come up with something a little more imaginative than that.
The seed was sown and my mind went into well - not quite overdrive, but was rising to a challenge. I knew i wanted to havae some family based sort of respite  -Peter away with a family who would look after him, but something maybe for us - even if it was only a few days.

I e-mailed my friend Linda who lives on Skye. Ran past the idea of us coming to visit, nothing was planned on paper at that point, but would the idea of us being there, meeting up with the girls, enjoying ourselves - it sounded good.

Now, life being life, and without going into loads of details, things kinda changed. I checked to make sure that things were ok for us to come up, but we would book into a B+B and meet up during the day.
Now - outcomes - the bane of our lives, always outcomes. Why can't "have a good time" be a suitable outcome?? No - doesn't work out like that!!!!
So our outcomes were that Peter would make and maintain friendships (with Linda's girls, be hadling money and choosing food (buying lunch for him and Yasmin) and Mum would get  abreak, knowing that Peter was safe. (am not allowed to mention that bottle of SOuthern Comfort we drank over 3 nights!!!)

So B+B booked, tickets booked for bus, goodies bought, off we went.
The journey takes about 7 hours - stopping in Fort William for a while on the way. As you head out of Glasgow and along the A82, the views are well - lovely. But even further up, past Fort William - they were stunning. I used to listen to the weather folk say "lingering mists in the Glens" and think "aye right!", but believe me - it lingers!!!

Eventually crossed the Skye Bridge, texted to say we were on our way and by 5.15 we slithered, slipped and slided into Portree Square - the town did not know what was going to hit it!!
Linda and Yasmin met us - linda said there was a slight change to our B+B, but that the woman had booked us in elsewhere and recomeneded Donna highly, so that was great.
Got to the house, unpacked and gathered together the goodies we had brought, plus some photos that we'd brought up and headed to Linda's place for dinner (which was great). We met Candace (lind'a middle daughter) and Lachie, her dad. I do have vague memories of seeing her dad about before i got married (linda and i stayed near each other)
Lachie, well - he was in his element - someone who loved Still Game, Last of the Summer Wine, Fawlty Towers - anything mad cap Peter was his man!!
We chatted, ate, had a medicinal scoop or 3 - Peter was in and out telling us what wsa going on and chuckling away. It was brilliant!

Tuesday, we went to Dunvegan Castle - we comment on Prince Charlie's waistcoat - he must have been a pip squeek and anyway - BHS Wedding Collection do a much nicer take on men's attire!! Could have got a job for my big cousin making PC's waistcoats for him and they'd have been nicer!!!
The castle and grounds are great and it would most likely take a few visits to do it justice. Yasmin and Peter beside the cannons - well, just lets say that Linda and i made sure they weren't pointing to us, lest our children got the idea to do us in!!!
Lunch, back to Portree to pick up goodies at the Co op, to the house, where Lachie and Peter set to discussing what they would watch. Linda and i chatted, looked at photos, Yasmin and Candace were in and out looking at the photos, having a laugh with us. It was nice.
At one point, Lachie came thru to the kitchen to get his tablets (after being told THREE times by linda to come and get them!!) He had a little sherry which he enjoyed and then said that he wsa "Going back thru to see his friend".

Oh man - that brought  a tear to my eye!! Here was a man in his late 80's and a 20 year old and they had hit it off! They were having a great time.

Thursday - well, a bit more DVD watching for the boys, Lunch in Portree and some shopping (no ££ shops, no M+S - it was lovely), Went to the harbour, Linda pointed out Donnie Munro (of runrig fame) - his house and then back for a tea of goodies.

Linda and i knew that Peter and the girls would get on well. What we hadn't faactored in was how well Peter and her Dad would get on. It was nice to see the 2 of them together and watching and chatting - Lachie just took Peter as he came.

Linda and i managed to catch up on loads of stuff - stuff that while letters and e mails are great, only really chatting and a cup of tea (or a glass of something) can do it justice.
So - the outcomes were fullfilled, we will be back and we both had a great break. We will be back.

Try stopping us - it's already been earmarked for the support plan next year!!

I enjoyed the break because often if Peter is sway, i take the time to tidy, sort out things and i don't take time out for ME. I find myself on a monday lunchtime feeling more relaxed and refreshed than i have for a long time. Good food, company and fresh air!!

I now have to organise the other lots of resapite, but typically, the person i'm trying to get, we keep missing each other when we phone. I also need to organise the adxenture holiday for Peter and Paul. Paul looking forward to that - they are of an age now that they prob would go off together. Paul thinks a week of doing canoeing and stuff sounds great!!

When i get the Skye Photos sorted, i'll post some - well if my technophobe mind and my pitying, laughing youngest son let me!!!

Sunday, 17 October 2010

Peter's support

We are involved with great support group called Unique.
Some of the members have become good friends, who help support us - you all know who you are and your names will come out in time!!
They along with some friends who have known me for years and put up with me are great!

But a time came in Peter's life where Peter did need more support thet as a family we couldn't always give him. He needed to be able to work on independance and not be with US all the time.
So started our journey.

We politely pointed out that Peter needed the support and could we please have some.
No came the reply from the council - and don't you forget it.
Next came the letters to the  councillors.
One of them has been great - has backed us in our quest and has been a source of support and help since. At 1st he wondered why we needed the support, but once he got to know us, he understood. Well - a full scale interogation of what you know about thomas the tank and disney films and your holidays does tend to wear you down.

Eventually, Self directed support was suggested.
Mmmm - we thought. We'd spent months being told that the council had NO money and with cut back, well, they'd have even less. DIdn't we know that the recession was hitting???

But i was persuaded to at least try. Luckily, the person dealing with SDS we had known for a few years and she took us through the application. What was the worst they could do? Give us the budget they already held for Peter's respite and let us decide what to do.

So off she went, armedwith our forms and pled a case. Now, quite what she said i'm not sure and neither do i really care! It was honest and legal (so she says and i believe her!!! ).
She phoned me to tell me that we had been allocated a budget well in excess of what the respite cost, Now we had to get on with the planning.

All this took about 2 years - from the time Peter left school and the child and family services and moved into adult services. I was a bit worried that i'd fall flat on my face with the planning, but at our 1st meeting, we came up with a few good ideas ranging from how Peter could be supported to get to college to how we could organize respite for him.
No Blackpool (as was suggested!) or Caravan (another suggestion we've heard!!) But when you've been as far afield as London and California, with Braemar thrown in, heck, Blackpool, a caravan.....................It is just NOT going to cut it with my boy!!

SO - we now have support to college. Nikki, Ryan and Kelly are just beginning to realize what we are like. The support started on the 4th of october, then we hit the mid term holiday, which hapily wsa our 1st lot of new respite. (will post more later!!)
We've had a couple of glitches, but nothing major so far.
i should be wary of those words - SO FAR!!
They may well (i hope not!) haunt me!!!

My 1st blog

well, here goes - my 1st blog.
I'm Julie and i have a pretty crazy life at times. i travel with several names.................. Julie, Jules and mum are 3 of the polite ones!!
Married to Matthew for many years and have 3 children - Louise, Peter and Paul. Peter has several and complex learning difficulties, which has kinda made our life crazy at times, but Louise and Paul do add in their fair share. Of course matthew and i are not crazed - we are the sane ones in this family!!
Says she twitching her head and hoping no one notices!!

We are involved in a really great support group called Unique - we've met many people through the group and some of them have even remained friends. You shall remain nameless till needed (Sue, Lynne, Liz, Maz...........................)

To protect the guilty, no names will be changed and all offers of decent alchohol will be accepted!

So are you ready for the journey??????????????

Glad someone is, cos i sure as heck ain't!!!