IPad YouPad

CP signed up for an IPad despite the need for food, bills and well, warmth in the house. Cats and I look on in horror as he blithely plays with new toy, that could have put petrol in the car for a year.
Turns out the new toy is a good ally for him with his TSAspie ways. He calms down, uses the IPad for lots of things to help him, like writing notes and lists, and listening to calming music, and writing emails. Its always attached to his left arm. I wonder if I should have an IPad installed internally in his sternum, so that I can press the buttons if I find him incommunicative. Earth calling CP.
He's had a bad week tic wise, so the IPad is a refuge for him. I fear it may replace me eventually. I am sure someone is working on a replacement partner App.
He has also found himself a few stressy tics, in terms of Echolalia, alarming for people in the garage when he shouts Petrol, Change, Thank You. He's had a punch in the chops before now, the puncher assuming that CP is being sarky.
Sleep is still an issue, although during last night's usual ticcy, negative thoughts and wakeful sessions, I suddenly hear a fanfare and voices. No, he's not channelling, nor is it the Four Horsemen of the Apocalypse. CP has the IPad under his pillow.... and has tuned into BBC World News.

we seek them here, we seek them there...

A week of looking for help. Biggest quest is why there is no decent coverage of neurologists or practitioners who have an interest in, or even (dare I say it.... but this is my blog, and not reflective of the views of all in Tourette Scotland) even dont know as much about TS as they might. I see a difference that is made to the quality of life for our members when they DO meet up with a practitioner who is knowledgeable of the wider ranging elements of the condition, in that they get a far quicker, better and more appropriate set of management treatments. In my view.....some of the past writings and research did not include Sensory Processing, or Invisible or Internal tics. The Invisible ones... obsessive thoughts, compulsions, rage attacks, fears, phobias - really horrible for the person to endure, and often dismissed as something 'other'. So my quest.... find those practitioners, and have them in our camp.

The week has also brought a flurry of visits to schools and hospital to buoy up our members who have reviews or need to convey information about TS to the people who matter. Transitions, and new classes, needed to placate and set in place procedures for youngsters next year, so they can enjoy their summer.

So, my week: its incredible how many people who hold the power, or make the decisions, do not understand what TS is - two key quotes: 'perhaps they shouldnt be in mainstream school?' and 'its just about swearing?' (SIGH). We continue the fight, troops!!

Neurosis

It appears that there is still so much misinformation about TS in high places

Trying to find a niche in the world of the practitioners is difficult, some appear to look on us as a group of well meaning volunteers, when we are far more than that. Especially these days. Our charity is asked to assist, advise, nurture.... and referals come in to us, rather than the other way around. We are being asked to support the professionals, more and more. And so it should be - working together, raising awareness, giving a voice.....

So, its a huge part of my job, to look at who we work with, who should we be working with, what the strategies are, where the gaps in provision are, and then work our way into those gaps for the benefit of those who live with TS.

So today, I have been mainly collating a range of research, writing up a proposal to the neurologists who might wish to partake of same, and seeking to meld the two. And looking for funding to smooth the way... as always....

Travels with my TS'Aspie

Its becoming apparent that our sanitised, soap opera savvy world doesnt accept the whoops, grunts and blurtings of my Current Partner (CP). He is a TSaspie, - a mix of Aspergers and TS, with massive tic attacks, meltdowns, and a sharp tongue. You can imagine he may not make the Agatha Christie List of refined diners......
When I lived in Italy for a while, they were notable for not giving a fig about bringing everyone in the family to their dinner table, no matter what foibles they had.
Here, I've lately had two of what CP calls 'Incidences', that bring home the fact that most people 'out there' do not like or appreciate a person who appears to be doing something out of the ordinary.
One such Incident was within my own circle of friends. CP came with me on a visit, due to the serious illness of another of our number, a meeting he was entitled to be involved in. He cares deeply for the friend and she was delighted to see him. Not so the others within the outer circle, whose mealy mouthed mealy mouths, nearly put me off auch encounters for good. Mutters about 'not bringing him' and 'why did you bring him', like he is some unruly, untamed pet dog. It was hell.
My role at these gatherings, seems to be a treading eggshells, smoothing the way, and explaining, explaining, explaining...
Then a recent Incident was CP being asked to leave a social gathering (which he usually avoids) because he had made an inappropriate remark (a tic one, not premeditated, but still darn funny, and, er, appropriate...) and got a humphy stare back and a snippy remark about not behaving properly, etc etc. I asked the Humpher to 'explain what she felt and why she thought it a good idea to react that way to someone who has involuntary behaviours, and who had driven a long way to be treated like this'. (Oops, well, I had been emboldened by vodka at this point; and we had driven over 100 miles for the pleasure of being humphed at). She said she thought CP did these things 'deliberately'. So, an opportunity to explain... again.... about TS and the Aspie way. Good result: CP welcomed back into the room, but not really a triumph, because its just another sticking plaster over the thin lips of society, who dont like those who 'frighten the horses'. Sigh

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Welcome to our new News Blog!  This will be the place to read about our latest news, upcoming events, what we are up to as a charity and, hopefully, some interesting articles and stories from some of our members.  Please feel free to leave your comments (where enabled), as we welcome your feedback on issues affecting you, as well as your feedback on how we are doing.


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