Saturday, 30 July 2011

The Dating Game

What a week. The Tourette Scotland office has been agog with the news that a TV channel want to put on a personal introduction style programme to match persons with other persons, in the name of love - and because it will feature such persons with Narcolepsy, Tourette Syndrome and Aspergers Syndrome, it was of great interest to us to see how that would pan out. And the agogness was even more heightened, by the thought of some tasteless Blind Date affair - and thought that was not dispelled when the proposed name of the show was announced: The Undateables. Say, what????

Facebook was off its head with posts, there were distressed phone calls, many emails - all hating the title and the dating concept. Filming is yet to start, but the show is commissioned so we are halfway to seeing it on screen. All the complaints were stating the same thing: that all this programme going to do for people with TS was to perpetuate the myth that they are flawed in some way; and set them up to be watched by an audience wishing to see the parade. And surely the biggest insult to all the participants is calling the show - and it is a show, not a documentary (and it is to be billed under factual 'entertainment')- The Undateables? Too close to the Untouchables (biblical reference to Lepers....) for my liking.

I also doubted the 'factual' side of the programme, too. How on earth, with that car crash TV name, can the programme makers prevent people tuning in, expecting to see a bit of a side show about someone who is going to act in a different way to them, so they can point their beer can at the telly and say, at least I am not like that?

I was told by the TV folks, that the title is meant as a 'draw' and that once tuned in, the beercan waver will be so enraptured that they will watch the rest and see the truth....they will be converted.... and that of course, the programme will be handled sensitively, the content wont reflect that title. Aye Right. I cant see that. If the title and the programme dont match (surely a pun, there) then you wont have the right people tuning in, anyway? Its very, very upsetting.

It transpires that there are some supporters working with the proposed TS participants, some people who do know about TS and who have assured us that they will be working hard to change the name of the show, and to make it work as a programme that demonstrates the 'dateable' aspect of TS. Thats some comfort, and better than no-one being involved at all. But my waters are still telling me its not going to be easy. Already, that dreadful title has caused some of our younger members to be teased and hide themselves away. If the show goes ahead in this way, what chance have any of them got, once its aired? So, to my busy week: writing and phoning, emailing and complaining - to the film makers, the media, the disability representatives, and the TV channel, plus a number of other supporters; already the impetus is gathering, to change the whole thing. Will they listen?

But for me, its created a few days more work; and I wait and see how it will turn out, as I would much rather the energy, time and commissioning fees went to a programme that shows purely how TS is, about the lovely people in our community, and overturn all the myths about TS and campaign for better understanding and more services. Especially in Scotland.

The other tasks absorbing me this week have been completing reports, funding bids, and looking at next year for events and more outlets for expressing the views of people with TS in more places - if the prospect of a TV show that may not work in our best interests has done anything for me this week, its to motivate me to look for more media that does express what our community is saying. Expect Radio TS anytime soon.... yes, we have a voice, the voice for Scotland and we shall be using it to demonstrate how TS is being lived here, what we want, need and deserve. Onwards we go....

Polis at my door

One of the consequences of living with CP, and his living with TS/AS is that he attracts attention, and, after years of non excitement (despite spending my marital years with a gambling, drunk, womaniser....) meeting him has meant I have had many a brush with the Law. Firstly, there was a group of youths who laughed at his TS talk and his dyspraxic walk. When his Inner Asperger decided to show itself by remonstrating with them ('excuse me, may I ask why are you laughing') including wagging his finger in their faces, he got a large, empty bottle of vodka about the head. A and E all night. I'll give you a forehead scar, Harry Potter. You should see the scar on CP's forehead after THAT incident. Voldemort? Voddiemort, more like.

Thus, a visit to the polis station to identify the wee youths, etc etc. Then there are two separate road rage attacks on his person, where he stopped to tell the drivers how badly they were driving; one where he had actual strangle marks on his neck (I have found the urge to do that myself, sometimes) - and another where the guy had punched him in the neb. Since then, four times the Law have appeared at the door: CP has been spotted muttering and appearing to be in distress, CP is swearing in public and there has been a complaint, CP being yelled at by kids again and when he shouted back, their mum complained.

Today, polis at the door, and me in my jimjams. I thought, what now? The guy is the same polis who came to tell me some kid had nicked my chinchilla from the shed and that he had been retrieved and was being held in polis custody (the chinchilla, not the kid...) CP was out so I thought the worst. Especially as he asked me if I owned such and such a car etc etc. Oh No. Thinks I. He's challenged someone again, or they've seen him ticcing and have snitched on him, he is particularly ticcy this week as we are planning a trip away, that always sets him off. But no. It appears that I (ME!!! Surely not....) had been to the petrol station and left without paying. Oh. My. Goodness.

In the throes of trying to get away from the chatty till personage, whilst buying a bagful of groceries at the same time as the petrol, she had, whilst telling me her life story, forgotten to press the petrol bit on her till. And having paid some paltry sum for milk, bread, beer, chocolate (all the staples) I didnt notice that £15charged to my card, wouldnt have covered the tankful of petrol too. Well, I do go back a long way... I remember being upset when petrol went up to 50p a gallon (ask your grandmother...)

SO this time it was my turn to stand in the porch with the Law, and I quickly proved my semi-innocence after a very unpleasant rummage through my dustbin (law of sod: the receipt was stuck on some nasty substance) and showed that I hadnt just driven off without intent. Just driven off without wits about me. And in case you think I am writing this from clink, I was allowed to phone the garage and pay over the phone. But, methinks, the garage at the Triangle wont be seeing my good self there for a little while... unless I wear a false moustache...

Friday, 22 July 2011

Footballs and Fate, and Sharing Neurons

Driving along like you do, and a huge football bounced from the ether, in front of the car, and away into the shrubbery (great word, that, shrubbery). I couldnt see any nearby houses or even any nearbyer snottery kids, so from whence did it come? (More to the point, where did it go.... and is it still rolling down the Forth?)

Just then, I saw the sign: 'Stirling University Sports Institute' aha. Some big kicker, training to kick, then. So, maybe, when you have a mystery, you should look for the solution in a simple way. And not too far away at that. I wonder if I should do that in life, when a great big football nearly kills me, reflect on what that is telling me (keep away from sports institutes?).

I am always looking for complex answers and perhaps I should not try so hard to find them. Living with a TS/AS person, their compulsive angst can rub off, and I've found myself being analytical and worrying endlessly about what and why, never mind about the wherefores.

Its fair to say that I am a flibberty gibbert, whilst CP is of serious furrowed brow, so we exasperate one another constantly.

Perhaps then, I should give some of my lighter neurotypicallness over to CP, to soothe his angst, and he can share some of his down and dirty OCD dedicatedness with me and make me more grounded.

Perhaps I might have been that careless football kicker (lets pretend) and not caring about where it went, yet had it been CP, he would have been planning its trajectory (we are talking flip chart/coloured pens here) and knowing exactly where it would land.

So, instead of my worrying about CP and whether I need to cosset him all the time - do all that planning, amending as we go along, manoeuvring him hither and thither to protect him (me?, them?)from his Neurodiversity and all it brings, I should let his 'football' (we are talking metaphors, steady on, at the back...) bounce about and to hell with those who comment on his AS/TS personage. Let his actions flow as they will, his neurons do their stuff, and into the shrubbery with it stigma, prejudices and all!

common enough to be everywhere but not common enough to be known

This week, more dialogue about those worthies practising in the field of neurology and psychology.... who have a critical role in identifying and treating TS, it would seem. Yet it appears that few such worthies are using TS as their specialism?

So... I am desperately seeking that joint being, a Neuropsychologist - and even more picky of me, who has a major interest in TS - where are you! Must have good sense of humour! Must be able to travel!

Tourette Syndrome folks, its a case need of pushing forward TS as a good subject for specialism; hey, medical folks, we are over here, and you can help us with treatments (and not just drugs, which are fine, but not the be all and end all ...) TS is interesting, fascinating, worth a paper in Lancet or Practical Neurology, come on in.

(Is TS common enough to be everywhere but not common enough to be known?)

Lots of news about the benefits and how they are being assessed by a private firm, hmmmm. That does explain something, mayhap? Its not all doom and gloom (or is it) as its been a good week for supporting people through challenges and seeing some good results. The Helpline has started its work, and once it gets over its shyness, will prove its worth. The Busk in Buchanan Square overlooked by good old Donald Dewar, brought the sunshine and some music (including a bit of Elvis) to the passersby. You aint nothing but a hound-dog, you guys. And an Asian family were convinced that the group of young persons singing were a famous group. The Tourettes?

Well done Reagin and co, anyway. And to everyone who does their bit, week after week. Oh, and if you are a neurologist (hello!) expect a pack of information and an invitation to dine with us. Or have a biscuit, at least. WLTM.

Finally, Children in Need - what can I say, you are loverly. And thank you.

More funding bids, more cases to chase, more issues to overcome. Great stuff. Onwards, ever onwards!

Friday, 15 July 2011

holidays and low days

CP is very ticcy - is it the thunderstorms? Is it the lack of activity around him because everyone who is anyone is on holiday? Or is it because he knows we are visiting my rellies soon... and he is practising trying to be a person who enjoys the company of others and can do small talk... aha, Dr Watson, I think we may have cracked the case.
A small cave equipped with computing equipment and anything with the Apple Logo on it (I think we are going all James Bond, here) would suit him, at any time, not just on his feeling low days.
Hot sun makes him tic (hey! What makes you tic? Gawd. What a very bad pun)
Cold places makes him tic
Light makes him tic
Dark makes him tic tic tic
Travelling and getting tired makes him.... guess
Fear of new places, change, routine awry, decision-making, all ticcy things.
So you can see, holidays(Going Away), or being in one place but with the wrong environment (Staying At Home) doesnt help.
Perhaps some kind of induced sleep during July and August? Answers on a postcard... if you can get away, that is....

A cast of thousands

Dazzled by the brilliance of our Tourette community, who are determined, supportive and keen to get involved in awareness raising! And in making a change for all. All of which has an impact on the validity of such organisations as Tourette Scotland, and helps to turn more listening ears our way...
Feedback this week from the recent neurological conference, shows that even those who think they know.. have the capacity to know more. Some still think its about swearing and thats you.... And that not many people have it. Or as someone who is in the profession and should know better, said this week, 'I've heard that its curable'. *sigh*
A hectic week with lots of interaction with our members and volunteers, and visits from funders. When I start to tell others about what we do, and about our community, its always a pleasure, because TScotland isnt about this person or that person, its about a collective, a co-operative if you will, of many many people with different skills and approaches, but with the same end goal. Make life on an equal par as others, for those with Tourette Syndrome. Come the revolution!
This week, I have mainly been doing Research and Funding, all critical to sustaining and informing accurately. Some success with referalls for a couple of members looking for special help.
Looking forward to adding to our services over the next months, including some specific support for those times when you need someone to have a chat to over a cuppa. Wouldnt mind that myself, sometimes.
Helpline starts next week, so thats a couple of us bringing in the camp bed! But it gives me a warm, fuzzy feeling, or is that the cocoa I just spilt down my front...

Friday, 8 July 2011

flushed with success

CP has had a major crisis this week, in that the drainage system in our old house has decided to go on holiday. Take a hike. Have a rest. Absent without leave. AWOL. Awful Water Over Loo. Which is blocked, as is the bath and the sink. Horrible gurgling, such as Creature from the Black Lagoon emerging from the deep. Icky stuff coming upwards from plughole, such as in Cocoon. Must stop watching bad B horror movies.

CP has Sensory Processing so cant face smelly, icky, marigolded-hands down the u-bend, malarky. I get home and he is waiting with plunger (ooh Matron). No luck. I've put down several gallons of toxic substances including sulphuric acid and, on another day, caustic soda. I am amazed I havent created a new universe down there. Maybe I have. A Black Hole would be preferable to no flush.

CP has OCD too so the whole break of routine, and the added thought of nasty happenings, has driven him to reside in the motorhome in the drive. Finally, the lovely Ruth has given me the name of a Drain Cure company, who came out today and rescued me and my loo with much sucking and piping and sawing. Some broken masonry had apparently invaded the soil pipe and blocked it. How, are the bricks walking, now?

CP will be able to relax, and resume his routine, which is just as well, as the bathroom is his meltdown room, and he was trying out all the other rooms instead, none of which suited him, and I was running out of house.

Cant say calm will be restored as that is a misnomer in our establishment, but safe ticcing, meltdowning and the general purposes of bathrooms, are indeed back to normal.

Our loved ones

A curious thing, serendipity. It appears when you least expect it, and this week has been one serendipitious (?) event after another, and clearly I am being nudged in a direction....that of supporting those who are the supporters.

I've met with quite a few of our membership over the past few days, mainly in pursuit of face to face help; and have seen how the love and care, support and belief, of those closest to them, helps them to get through the day. Very critical if you are low in spirit, but high in talent and aspiration. Rich in need, but poor in resources. Our members are a band of brothers and sisters, and look to each other for that empathy and that innate understanding of what is it like to live with TS.

The people who care for them are a band of sorts, too.

And so, what about those carers, loved ones, supporters - what amazing folks, and without them, maybe some of us who arent in the right advantageous spot at the right time, or who have an uphill battle to achieve our aspirations, maybe we wouldnt get there at all without those loved ones.

So hats off to the loved ones, the ones who care about us and for us. Our support is for you, too, and thus the strength is shared between us all.

Friday, 1 July 2011

Happy Families

I've mentioned in my work blog that its been a hard week, due perhaps, to the newly started holidays and concentration of effort to enjoy ourselves when we've all had a tough winter, and if you've been campaigning and fighting, its hard to step back from that.
CP has got some sort of malaise against holidays, too. He cant emerge out of a depressive, obsessive thoughts bubble, and the sunshine and people in families all going out on days out, really clashes with his darkness. Never one for paisley patterns, he tries to block out brightness and continue with his dour demeanour. He does have a tic that encompasses light and dark, so he cant sleep or function with bright stuff around him. Perhaps I should install a cave under the hall.
He hates the summer anyway; loves the winter. So make that an Igloo.
I wonder if, whilst daily struggling against the tide of apathy or vacuousness (he says) that are possessed of the Neurotypical, and his constant battle to have the approval of his fellow humans without judgement, I wonder if this has coloured (or blackened) his view of people and their antics. Certainly, this time of year is hellish for both of us, no matter what I suggest, its all too bright, too noisy, too 'full of people', and I cant even begin to imagine how horrible it is for him to carry his fear of someone taking the mickey, or staring at him, or causing a fuss. Make that a hermitage, then.

Snakes and Ladders

A heavy support and advice week, callwise and emailwise, in the Tourette Scotland office, perhaps its the summer holidays concentrating people's minds? We've made up what looks like sheaves of log sheets and heard a lot of terrible, and complicated stories, including one that shocked us to the core.

A week of ups and downs, snakes and ladders. Up you go, down you go.....

The snake: the concept that our most important work is still to convince people, and people with power, too, that Tourette Syndrome isnt just a twitch or someone mucking about.... disturbing.

However, therebe the ladder! A meeting with a room full of professionals with a great deal of influence, talking about TS, including presenting the view of parent/child and adult, went down a storm and there were many converts afterwards. Hooray. Perhaps we shall see results in terms of apt referalls and good support in future.

I've been honing my DLA manual and also writing a 'diagnosis' trail, not full of snakes this one - but a set of ladders, if you will, for people starting off with their journey of TS and what they may find on the way. Lots of peer reviewers waiting to have a look at my efforts and tell me if it works, or if it sucks. Snake and Ladder in one. Also found out that my theory on Hypermobility being allied to TS in some way, has some backbone (a double jointed one... hehe...) hmmmm.

Ladder: Looks like one funder has agreed the idea for our teen helpline and other suchlike work, good old Pudsey! However, a hissy old snake: Charity law continues to take up eons of my time doing the paperwork.

Funding applications this week have included my scrounging stuff from BT, hoping for lots of free stuff! East of Scotland tomorrow, for a treasure hunt, I am very bad at those. Usually snuffling at the roots of a tree whilst the clue is pinned above my head. Darn.