THE RAMBLINGS OF A STRUGGLING ARTIST ON LIFE WITH TWO TERRIERS, A PONY WITH ISSUES AND OTHER WILDLIFE AND BIRDS THAT CROSS OUR PATH

11 March 2014

CATCHING UP


What a week; I realise it's been that long since I last posted. I've found myself thinking longingly of my half hour in the MRI scanner after the frantic nature of the past seven days. I took the photo above in Sunday morning's glorious sunshine. Hasn't it been lovely? Apologies to any snow-bound followers out there; it looks like our spring has arrived at last. I was wearing short sleeves! I think the photo is very calming and, given the next paragraph, I need a bit of that....

It would be safe to say that our meeting with the paediatrician last Thursday did NOT go well. The incompetence of this department along with the infamous CAMHS (child and adolescent Mental Health Services), which I now discover is run, not by the NHS, but by Richard Branson in the shape of 'Virgin Care', is quite staggering. Last January, we received a letter from another member of the department following an initial meeting which read very clearly:

DIAGNOSIS: Tourettes Syndrome

Now, it seems, they are retracting that given current 'GUIDELINES' which say that Tourettes Syndrome must include tics that are considered to cause public offence. I should mention that Tourettes Action, the respected charity to whom they directed us last year, tell us that 90% of Tourettes sufferers DO NOT swear. A major discrepancy there. There were many of those and we weren't going to take it all lying down. The doctor was completely wrong footed by the fact that we were very upset and very angry and weren't going to let it drop. We were in there for over an hour and he was visibly shaking by the end. We felt utterly depressed when we came out but he was very, very contrite if not admitting liability for the complete balls up. OB does have Tourettes and if they spent half an hour in our house when he gets home from school, they would have no doubt. Their issue is now the fact that the Virgin run CAMHS is responsible for its diagnosis, rather than them. There is a lot of offloading and we're just completely fed up with it. We said how disgusted we were and asked what on earth they suggested we say to OB? He has spent the last year coming to terns with and telling people about his now doubted condition. It's disgraceful. He was grudgingly apologetic BUT, he did say he would try and get us the referral to the Great Ormond Street Hospital tic clinic that we've been asking for. If we get it, it would make the nightmare worth it. 

Right, enough of that. Our lovely son will be ten tomorrow and it must be a positive day involving that new bike, which has the frame size for a small adult and 26 inch wheels! Lots of books too which he will be less enthusiastic about initially, but enjoy later. I have a huge backlog of pictures but have really tried to edit better than usual. It used to be my job so there's no excuse. Here goes...........

These were taken in watery evening sunshine after dropping Trigger off with the madams:





The dogs have been having fun:





The birds have started to appear, including the first Stonechats, ready to try and fit in four broods:


Having sunshine has been fantastic. It brightens every scene. This view of the 'Round Pound' is almost impossible to photograph without it as it disappears into a flat line without the shadows:


The garden birds are happy too including rather greedy Great Spotted Woodpecker:






Pouncing male Chaffinch:


And this lovely Blue Tit:






I keep finding Trigger asleep in the sun




The Dartmoor Madams have taught him to eat Gorse; he would never have even tried it without their guidance but on the way to see them, he keeps stopping to snack on its agonising prickles:


Lady Jane is always pleased to see him


I saw my first Ladybird of the year on Sunday up in his paddock here:



Don't you think this lichen/moss combo looks like some kind of aquatic fossil?


So sorry I've been so rubbish at posting and visiting. The chaos carries on with OB taking five friends to the cinema and then back for tea here on Saturday. I'm planning to do a Rubik's Cube on his cake with coloured icing. I always ice his cake with whatever his current obsession is. I'm not looking forward to this one. Failure is NOT an option. Thanks so much for all your lovely comments on the last post and good wishes regarding the so far inconclusive MRI scan; am still waiting for feedback. So, until next time, here are those dogs this week.



52 comments:

  1. What a flipping palaver!
    Hang in there...
    HUGS
    Jane x

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  2. So sorry to hear you had a difficult time with the paediatrician, I do hope that the referral to Great Ormond Street comes off and is beneficial. Wishing your son a very Happy Birthday, I'm sure his cake will be amazing! The editing of your pictures is wonderful ,it does make such a difference to have some sunshine too .Sarah x

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    1. I have the door to the garden open today! Beautiful. Thanks for your good wishes Sarah - much appreciated. x

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  3. What a time you have been having, and know from my own med. experiences how right you are to pursue until you are (reasonably) happy. Some brilliant pics as usual, Em, including the Ladybird. Lovely to see these re-emerging. Stunning Great Spotted W. too!

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    1. He's a beauty isn't he? I think all that rain has washed him clean!

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  4. Sunshine...........lifts the soul!

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  5. 'Staggering' or should I say 'bloody appauling' !! - you stick to your guns and Tell Those people, we are right behind you. Good for you. Stick with it. Become a thorn in their sides and you will get to GOSHosp. !!!!!!! (sorry for my rant...I just had to have a say too).

    Your photographs have calmed me down now....I'm sure it does the same for you, with those wide open spaces and your lovely dogs running about enjoying the freedom.

    Wishing OB a wonderful Birthday. What an amazing lad you have and being able to do a Rubik's cube.

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    1. I don't know what I'd do without the moor and I'm sure you feel the same about the sea. I can be super stressed and go for walk....I come back LESS stressed, if not completely cured!

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  6. I completely agree with Ann. Keep on fighting Em. The GOS referral is the least they can do for your son (and for you) after this fiasco. You must feel totally exhausted by it all.

    Thank goodness you have beautiful Dartmoor to 'escape" to for a while, and the peace of being with Trigger and his Girls. Wonderful photos again. Those two happy dogs must lift the spirits of all of you!

    I hope OB has a great party.x

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    1. Thanks DW and you're right, I do feel completely exhausted by it, but don't really feel I have the right to given what poor OB has to put up with. I hope he has a great party too!

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  7. Happy Birthday OB - I'm glad I'm past the stage of having to decorate birthday cakes, Matthew's current obsession was always the most difficult thing to design (think: concrete mixers, fire trucks, etc!) until he reached the soccer stage - simplicity itself by comparison!
    I'm sorry you're being given the run-around by the system - I agree with the "give them hell and don't let up" comments, but I feel for you - it's so exhausting fighting 'the system'.
    Lovely bird photos - I was going to ask why it was called a Blue Tit, not a green or yellow tit, until I saw the lovely shot of its head! We don't have them in the antipodes, they're charming! And your photos are excellent. Thank you. Be strong - tap into that anger when you need to!

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    1. I love the idea of you struggling with a fire truck cake Virginia. I wonder if this will be my last year of doing it. He may go all sophisticated on us next year and ask for a selection of petit fours. Not a chance!

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  8. GRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!! On your behalf!!!!!!!!!! I am so sorry for you that you have to deal with this sort of thing, as if dealing with the issues, then the diagnosis isn't enough, never mind all else that you have going on in life, to then be told it isn't what they said, even though it is all that they said it was!!!!!!!!! How on earth can people do this sort of thing and expect to get away with it!!! Sorry, I am so cross for you! I truly hope that you do get to GOSH, as they surely have to be able to offer some help advice support and whatever else you need. I am thinking of you. xx

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    1. Thanks Amy - I appreciate your Grrrrrrrrrr! GOSH is the only place that has a dedicated Tic Clinic with doctors who understand TS, so I'm keeping everything crossed. xx

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  9. I don't know what to say... what a horrible mess.
    Sending big hugs from Tucson...

    Hope OB has a wonderful Birthday.
    Let There Be Cake !

    cheers, parsnip

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    1. Hugs much appreciated and cake much needed!

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  10. Each time I view the exquisite detail of your photographs I spend a moment wishing I had persevered with my fuji camera. Then I remind myself that I was very frustrated with the learning curve--which seemed to be stuck. My SIL is enjoying the camera and I have my new little Canon to become better acquainted with.
    I can always visit you to be soothed and inspired by close-ups of birds and dogs and all the wonders which your artistic eye shares with us.
    I do hope that some of the complexities of treatment for OB can be sorted--an agonizing time for all of you.

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    1. Thank you for your lovely words MM. They cheered me up so much. x

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  11. a feast of stunning photos as always.

    Happy Birthday OB, have a great day and enjoy your new bike! How exciting to be 10 years old. Double figures, that's very special. Love from Aunty Kath xx

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    1. Thank you Kath. I've passed on your wishes; he really loves his internet Aunties!

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  12. I do hope that you get a referral to Great Ormond Street - it appears that if you do not tick all of the boxes in the exact order these days problems ensue. I too find it staggering that Richard Branson is running the show. My husband works for the CAB and is always coming home and moaning about the fact that so many different agencies are now handling problems which used to come under the control of specialised government departments.

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    1. It seems that everything is about avoiding paying for anything but I can't believe constantly fielding people is cost effective. Thanks so much for your thoughts Rosemary. x

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  13. Being 10 years old, having a new bike, and a Rubik's Cube cake will make OB perfectly happy for the day and the sun is deciding to stay for a few days;) The 'real' world should occasionally be put on hold and forgotten about. Wishing you strength for whatever comes in the future. Thelma xx

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    1. He's had a great day and we have indeed tried to forget everything, if only for a day. Thanks Thelma. xx

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  14. So sorry to hear about the problems you are having - I really do hope you get the referral to Great Ormond Street. I hope all goes well with the MRI scan results too.

    Beautiful photos, as always. I hope OB has a lovely birthday and the cake sounds as though it will be amazing :)

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    1. I wish I shared your confidence in the cake!. I promise to post a picture of my efforts.

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  15. What a nightmare. We had endless fights about statements of SEN and then placements. Get a lawyer. We have one we paid for and then one that we had via legal aide. A complicated story but the nub is that health specialists leave their problems at work, you live them all the time. They mislead, are economical with the truth and use words very carefully to twist meanings out of all recognition. A specialist lawyer will have heard it all before, knows the tricks, is able to advise you calmly and help keep you sane.

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    1. I know you understand Charles. I'm sure you have experienced far worse. At the moment, we can't really afford a lawyer, but will bear it in mind if things get nasty. We're waiting for the letter from the doctor whilst drafting a chronological document, detailing everything that has(n't) happened, to present to them. The stress is debilitating sometimes, but I'm sure you know all about that! Thanks so much for your support.

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    2. You may qualify for legal aide. You cannot obtain legal aide to appeal educational placements but for human rights/quality of life issues you might be able to. The great thing about lawyers is they lead you away from agreeing with innocent sounding statements that later prove to be anything but innocent. Also professionals know that most people do not know the law or their rights and so they try to pull the wool over your eyes. A lawyer stops this dead. I am afraid it comes down to budgets but as one experienced insider told me, there is always enough money - it might be in the wrong place but the cash exists. Good luck!

      If you get stuck the address of the legal aide firm we used who are very good is

      Mitchell Woolf
      Scott-Moncrieff, Harbour & Sinclair
      Office 7, 19 Greenwood Place
      London NW5 1LB

      Tel: 020 7485 5588
      Fax: 020 7485 5577

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    3. Thanks so much Charles - I have copied this out.

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  16. Don't give up. and don;t despair Em - fight for that Great Ormond Street appointment, make everyone's life hell until you get it. He is your son, you love him and you want the very best for him. I am sure he knows that - love eventually carries you through these things. One day I hope you come across an expert who really has OB's interests at heart and is able to do something for him. In the meantime - lots of love, lots of hugs, good humour when possible - and keep taking the wonderful photographs. This message comes with love, by the way.

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    1. Thank you so much Pat. Getting out and taking the photographs does keep me sane, as does the walking and the dogs. OB's sweetness and ability to take it all in god spirit is an inspiration too. He copes much better than we do, although we're keeping all this business from him. There is no point in upsetting him unless absolutely necessary. Your love is much appreciated! x

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  17. Happy Birthday to your son x I'm sure he'll be thrilled with the bike. The cake sounds brill. Clark is eleven next Monday and wants a picture of his dog on his cake!
    Re the doctors, it sounds like the left hand doesn't know what the right hand is doing which is very much the norm nowadays!
    Finished one of your dishcloths!!!!!!
    Great pics of the woodpecker.

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    1. The dishcloth news has cheered me up no end - thanks Bridget! x

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  18. I'm sorry to hear you've been so let down by the system , Em. I had no idea that Richard Branson's Virgin Care has these responsibilities - I find it staggering as well. I really hope everything works out well for you without too much of a battle.
    Happy Birthday to OB! I'm very impressed by the thought of a Rubik's Cube cake.
    Lovely photos of the moor in spring sunshine

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    1. I won't actually be making the cake in the shape of the cube, which would actually be easier. Why didn't I think of that? No - I'm stupidly attempting to reproduce a realistic perspective view of the cube in icing. You see why I'm worried? Thanks for your support Wendy - it makes a real difference.

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  19. Oh Em, how dreadful for you all. I do hope you can get some headway. I am impressed by the fact that you are not taking this lying down. Sometimes I think these people think otherwise but good for you!!! I think they had a good lesson on parents who will fight the so-called powers-that-be to see that their children are taken care of, and this is just not on and sounds absolutely appalling.

    But then, Happy Birthday OB! The bike sounds wonderful and I'm sure he will enjoy his books.

    Lovely photos as always.

    Hang in there and don't let the you-know-whats get you down. Denise x

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    1. Thanks Denise. We will keep on fighting!

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  20. Yours is a story I am hearing more and more from the people who come to me for healing. Its a total lack of communication and joined up thinking and it is disgraceful when it's people's health, especially that of a child. Presumably, the official diagnosis relates to the treatment offered? Because otherwise you know that its Tourettes which is the important thing. How deeply frustrating for you all. Keep ploughing on Em- you will get there in the end x

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    1. You're spot on. Treatment = money but I can't believe farming out CAMHS is cost effective? The person we saw there last didn't drive and therefore didn't come to the meeting he insisted we have with all agencies. There were M & I, the head teacher and a very kind Educational Psychologist who has been chatting to OB just because they get on. It's a disgrace. Thanks for your support too CT - much appreciated! xx

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  21. Hugs and happy birthday wishes to your son... Cx

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  22. Absolutely inexcusable! I get so tired of dealing with medical organizations/insurance/doctors and the like. Your problems with OB's Tourettes and resulting idiots in charge unfortunately are more commonplace than not. Keep standing your ground.

    Love all the bird photos (especially the spotted woodpecker) and the Dartmoor madams!

    My medical problems resulted in a diagnosis I am going to check out and question further before I jump in and say I have it. But until I get my new insurance in place I am just sitting waiting.

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    1. I guess we should have thought that way, but if someone tells you something and everything points to its being true, you go with it. I find it so shocking that guidelines are what is driving this; absolutely ridiculous. I'll keep my fingers crossed for you and your diagnosis, hoping it's what you want. x

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  23. I am FINALLY able to post - the hard drive went on my main computer and the "repair" they carried out was worse than useless as the "new" hard drive couldn't even raise a smile, let alone power Chrome or You Tube . . . It pays to complain!

    Anyway, photo number 4 of the moor is SUBLIME - that LIGHT. It's like the storm light you get sometimes but is so hard to capture.

    As for the Tourettes, I cannot believe what the world is coming to, if it lets entrepeneurs run aspects of the Health Service and which contra-indicate the very problems OB is suffering from. I hope and pray that you get the referral to GOS. Meanwhile, keep fighting the barstewards and I take my hat off to you for your fighting your corner with the Doctor recently. Oooh, I would like to go and give him a good shaking for you and OB.

    I trust OB had a good birthday and was thrilled to bits with his big bike!

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    1. He is - thanks BB. We will keep fighting, exhausting though it is!

      Glad you like that photo. It was a most extraordinary evening. OB was at a friend's for the night, so it was later than I would normally be out and it was magical; still and a biting chill in the air.

      Perhaps we could take you to the next appointment as hired shaker! xx

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  24. Beautiful photos Em, I particularly love the chaffinch image and the second image of Trigger in the sunshine. So sorry to hear of your terrible patient/carer experience, the mental health services are in terrible trouble and the gov is throwing loads of money at it right now. Sadly at the same time selling off bits of our health service is the way I see it will all go, it's what the gov want-so that they can give the work to their rich friends to make them richer.
    I really hope you can get things sorted. Belated happy birthday wishes to OB, hopefully the bike was a big hit.

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    1. It's extraordinary that anyone thinks farming out health business to companies can be a good thing. Have they learnt nothing from the G4 fiasco? Clearly not. Walking in to the CAMHS office is like entering a second rate car dealership with its receptionists trying to avoid you getting further than the door. As for trying to get anyone specific on the phone? forget it, and they never call back if you leave a message. We gave up trying 6 months ago and have heard nothing from them either. I'm ranting again....sorry! OB's bike was a great hit - thank you. x

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  25. So sorry to hear about this, seems like the provision of care just gets more complicated by the minute. I hope you all find a way through this and that OB had a lovely birthday x

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  26. I hope OBs birthday was grand !
    Sorry about the health care fiasco ~ it is so very frustrating .

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