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

9 December 2013

TOURETTE SYNDROME


So sorry about the break in transmission; it's been a difficult week. Eleven months ago, OB was diagnosed with Tourette Syndrome. Up till now, he hasn't wanted me to talk about it here, but has now agreed that the more people who are educated about what is an incredibly cruel condition, the better. Those of you who have been following long enough, might remember me struggling this time last year, which was when OB's tics were escalating exponentially from what had been one one or two 'habits', as we called them when he was very little, to multiple and complex motor and vocal tics, which was like watching him be taken over by an alien. He also has very low level Asperger's Syndrome, which, if anything, has a positive effect on his character and life. His mathematical and general academic ability and sometimes ingenuous sweet nature are positives whilst the only negative is his total lack of organisation. He takes things very literally and has the ability to see a situation without what can be the crippling effects of an emotional response. The Tourettes has brought him huge distress and upset, but I'm quite sure this ability to see things as they are has been of some help to him. The head teacher of his school has been a huge help to us, negotiating the completely ridiculous bureaucracy involved in having a child with 'Special Educational Needs'. It's a frustrating minefield and we have had hellish meetings with CAMHS (Child and Adolescent Mental Health Services) where OB has been treated like a four year old, not being talked to and been present during conversations on subjects relating to him we feel totally inappropriate. We were at our wits end a few months ago but the head had steered us through various processes along with our lovely GP and we feel we may be getting somewhere now. To help cope with the sometimes debilitating tics, which in his case and to our dismay, include some swearing, OB needs CBT (Cognitive Behavioural Therapy), which he should have been having MONTHS ago. We are now hoping he may get some soon and, if it doesn't work for him here, we really want him to be referred to the specialist Tourettes clinic at Great Ormond Street Hospital. The point I'm slowly getting to is that this week, OB's head teacher has told us she is leaving, just as he enters his final year before changing schools. A classic profile of Tourettes would have onset around eight or nine (OB was eight), peaking around eleven as the transition to secondary school happens. I got in the (lovely) car having dropped him at school and getting this news and just cried. Poor OB has had an abscess under a tooth most of the week and has been on ineffectual antibiotics and pain killers which is not great at his age. I've managed to get YET another dentist's appointment this afternoon and I fear extraction may be the only answer. As a parent who thought they were doing the right thing diet and dental hygiene-wise, this is a bit of a blow. Luckily it's only a baby tooth but no more smugness from me about the state of my child's teeth I can tell you! Too much fruit between meals. I'm going to stop talking about the Tourettes for this post but, now I'm free to do so, I will start telling you what it's like for OB and to live with someone with the condition. The Tourettes Action website is fantastic as a resource for information: http://www.tourettes-action.org.uk/

The Trigger transfer twice a day has been a bit of a challenge amongst everything going on this week and, on Saturday night, I walked the quarter mile in the pitch black, talking incessantly to stop the slight panic rising. He is gorging grass and can barely walk back to his friends at 7.30 in the morning. He stayed here last night as I seem to have done something to my hip which is making walking really painful. You'd think the vast quantities of drugs in my system for my back would help, but it seems not. Anyway, I really sound like a moaner today so here are some pictures from the week. Firstly, the bay Madams and some close ups:






I think a certain Stallion we saw in the summer has done his job.....


Snoozing:


Foal number 3 from last year, still smaller than his mother and looking more Thelwell than ever:


Some days have been glorious:




Some more grey:



Some incredibly windy:




Sheltering from it:




Trigger home:



Yesterday evening's moody skies:








So, with a slightly heavy heart - it's just getting to me today, sorry, I'll say, until next time, here are our two sweet boys, one of whom has found a way out of the garden which has at least won me the snip argument! I've just noticed Snippet is a bit grainy....sorry. Have a good week all of you and I just want to say how much of a support you've been over the last year, even if you didn't know why. xx



68 comments:

  1. Positive Vibes to help you through everything are being sent your way from Suffolk.

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  2. I know it seems overwhelming now,but it really will get better.
    Jane x

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    1. If his profile is classic, it may peter out in his late teens. so our fingers are permanently crossed!

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  3. I sincerely hope that a problem shared is a problem halved, although this is SUCH a problem that my statement may seen a trifle disingenuous. It is a great pity that his head teacher is leaving, as it sounds like she was a real pillar to cling to in a storm. I hope that the CBT will help him (and you as a result). In the meantime, if you want to have a good moan off-blog, I'm a good listener.

    As always, I am taking away a little bit of the moor I love so much, from your lovely photos. I think I have finally come to accept that I cannot MAKE things happen.

    The close ups of the bay mares' eyes and velvet soft muzzles was nearly as good as a hairy-pony cuddle : )

    Hoping your hip is better soon, and OB's toof too . . .

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    1. On the blog, a problem aired is a problem reduced by a factor of the number of supportive comments. I sometimes feel so isolated with it. We are told one in a hundred children have it but I find that extremely difficult to believe as I've never met anyone else, other than at our Tourettes support group, who has it.

      The abscess lancing last night was NOT good. Poor boy! He feels much better now but it was pretty horrendous and involved a scalpel and a hoover!

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  4. Such a shame your supportive head teacher is leaving, I really feel for you at this time. Poor OB having an abscess-so painful, but he should have responded much better to the antibiotics and pain relief by now, at least extraction will get rid of it and help the gum heal in plenty of time for a new tooth to grow.
    It's very brave of OB to allow you to share this with us, but he is right that the more people who know and understand the better the world will be for people living with these types of conditions. I really hope the CBT works for him.
    Love the pony pictures and the close ups, especially like the very pregnant mare.

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    1. They actually lanced it rather than extracting which was probably more traumatic, and he is now on stronger antibiotics. He does feel much better but I do wonder if whipping it out might have been better in the long run, as you say. I'm passing all your comments on to OB and he's really touched. Obviously heavily edited!

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  5. My daughter's work in the school system for a number of years was with children dealing with autism and/or Asperger's. ADHD seems to have become a wide-sweeping diagnosis here and children presenting with any classroom difficulties popped onto meds.
    I've read a bit about Tourette syndrome in the past and know that you are surely dealing with something very difficult and exhausting. It does seem there is hope of symptoms diminishing in adulthood.
    I think that so many times we shy away from those with a condition/problem we don't understand--wanting to be supportive or empathetic, but clumsy. I hope that you and OB can assemble a team of both clinical and social supporters to help smooth a difficult path.
    My favorite photos from this group are the ponies with hair in their eyes!

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    1. I love that one of the curtain of hair.

      I completely agree about the ADHD thing. Often a child is behaving 'badly' for reasons resulting for stuff going on at home or bullying and, instead of trying to get to the bottom o things the powers that be just put them on drugs; awful. We are so lucky that OB is such a sweet-natured child and doesn't have the explosive outbursts that many Tourettes sufferers have. Every cloud. You are also right about the exhaustion; a Tourettes sufferer will need a third more food again to replace the energy exerted with the tics. Our fridge and larder are full. Thank you for your Support. x

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  6. Oh Em, I am so sorry! My heart just breaks for you and OB. I've only been around one person with Tourette syndrome and it's an exhausting experience to deal with them. I hope you are able to find the help which is needed for both you and OB. I know a bit more about Asperger's as a friend's child has it. It actually has it's good points for her also. She is excellent in math and seems to be quite to the top in other subjects. But downer is her lack of organization as with OB. I read last night where Susan Boyle has discovered she has Asperger's also.

    Your photos are wonderful this time. Especially love the Madams and the ponies by the rocks. They are fortunate to have the Tors to shelter from the wind. I understand your walking the moor and photos more now. They I think help you deal with the problems that life has dealt.

    Please know that my thoughts are with you and OB.

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    1. Thank you Gail. I'm not surprised about Susan Boyle. I remember seeing a program about her on TV and thinking she displayed many traits! It presents very differently in women and is, of course, far rarer, as is Tourettes. I know I display a few traits myself but, as a female, it's far easier to disguise them. For example, I can't stand being late and get very stressedif there's even a hint of that occurring.

      Glad you like those madams; I'm missing them now I'm trudging backwards and forwards from the field and no longer have to fend them off!

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  7. Oh Em, you've obviously had some difficult moments and I hope the authorities give you all the excellent support you deserve. I really hope it all gets so much easier for you all. And I hope OB's tooth is much better soon.
    Your photos are lovely, as always. Take care x

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    1. Thank you Wendy. The tooth is on the mend after the drainage last night. We were at the dentist's for nearly two hours altogether. Poor boy.

      Getting that excellent support is a real struggle but complaining about one useless individual in particular seems to be bearing fruit in that it's got things moving a lot faster we hope.

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  8. I love your pony pictures! They would make a great calendar. Sorry to hear about the hard time you're having at the moment, though. Hope you get the very best help.
    Jenny

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    1. Thanks Jenny. I really must get a calendar organised. I would have to take orders around October I suppose though. Next year.....

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  9. Sounds like an awful week, seems a likely cause of any other pains you're having. Hope your son gets the help he needs and the tooth out too.--hart (a frequent reader but rare poster)

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    1. I think you're probably right, I hadn't thought about it like that. Thanks so much for visiting and for your good wishes. Lovely to have your comments.

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  10. I hope it helps to finally have a diagnosis and be on a course to understand the syndrome and get on with giving your boy a leg up on his life journey. And yours, a you chart the course with him.Godspeed; I hope your setbacks are few.

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    1. Thanks Joanne. You're absolutely right about giving him a leg up and I have to try not to get bogged down in worry about what it could mean for his future and just be positive for him.

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  11. Hang on in there my dear - I do hope OB gets the help he so clearly needs and that things settle down. Having worked for years in schools which worked with children with various 'problems' I know that a sympathetic teacher and a good back up group of people who understand what is happening can make all the difference. I do also agree that talking about it with him is a very good thing as it does help him to understand. He is obviously very intelligent - so many children with this kind of condition are. I have a friend whose daughter has Asperger's and she has recently married and is very happy, having learned to manage her condition well. Am thinking about you - and about OB too. Give him a hug from me.

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    1. I will Pat - thank you. Fingers crossed the temporary head, which I fear is the way we're going, is as supportive.

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  12. It's appalling that it's taken so long for OB to get the help that he needs. Bad news too that the Head Teacher is leaving, but hopefully between you, you have rattled the cages long enough and things will now improve.
    I think you're right about the stallion!
    Take care Em. Jx

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    1. We're so cross and with ourselves too for sitting in some of those meetings and not complaining at the time. I think this often happens within both the medical and associated fields, where you feel kind of overwhelmed at the time of an appointment assuming the person you're talking to is excellent at their job and has the best intentions for your child. I feel CAMHS is like a government quango which fields cases so as to avoid too much costly outpatient treatment. It is now being run by Virgin! Help!

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  13. I know nothing at all about Tourettes, so thankyou for sharing what is obviously very tough on you as well as OB. Please tell him he has lot's of Internet Aunties who are right behind him, with love and encouragement and Please make sure you take care of you, in all this xx

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    1. Internet Aunties is such a great phrase Auntie Kath. I know he's going to love it! Thanks so much for your support and good wishes.

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  14. I just happened to pop over hear from Going Gently...I used to work with a man with Tourettes. He was nice looking, married, well liked, and he had a good job. That was 17 years ago. Good Luck to you and your son.

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    1. Thanks so much Susie and any positive stories about those with Tourettes are gratefully received! Thanks for visiting too and lovely to have your comments.

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  15. Oh it's so hard to battle the system and emotionally draining, especially when a child is in the centre of all this. OB is very lucky to have such a wonderful Mum. Stay strong and all will be well I'm sure xx

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  16. I have worked with a number of children who have had Tourettes, Aspergers, and ADD over the years. Maybe your head teacher could be prevailed upon to write a report on OB strongly recommending the new head and any other teachers study up a bit on these conditions and how to effectively reach him. So much patience and understanding is needed.

    Wonderful photographs as usual. Would OB be interested in photography -- or maybe something else? Finding something they can excel at is such a boost to them but it's not usually anything at school.

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    1. Luckily OB likes school a lot (amazing really!) and, because he is so good at maths, takes great pride in that. We're trying to get him interested in doing some kind of martial art to give him confidence physically. Unfortunately, he WILL be bullied to some extent - he's already had an unfortunate incident that has only just come to light - and we have to be realistic about that rather than pretending it's not going to because he's so lovely. There are nasty children out there and we is a perfect target. We all have to be strong for him. He's a kind and loving, sweet child and I often find myself feeling how unfair it is, but that doesn't do any good and I just have to shake myself and move on. He's quite good with a camera but would prefer to play a computer game.....ggrrr.

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  17. Hi Em. I am so sorry to hear about your son, condition and I hope now that you know what his condition is, he will be able to get the correct treatment to help him.
    I love the horse shots especially the close ups. The Moors look wonderful. your boys just love it there in the wild lof the countryside. now you can talk to us about his condition, feel free to do so anytime.

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  18. I am sorry to hear that your son and your family have to deal with Tourettes. It must be very challenging for your son and your whole family.
    I don't know if you are a praying person, but I am and will put your family on my morning walk prayer list.

    Love the close up picture of horses eye!!

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    1. Not really a praying person but respect those who are and I really appreciate your doing so - thank you Happyone. I often wish I was!

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  19. A friend of mine's son was diagnosed with Tourette's when he was quite young, and if it's any consolation to you, he is now 12 and doing very well indeed. The positive effects of his condition would be actually missed as part of his character, if he were ever to be completely cured. For instance, he just loves dressing up, and spent about a year dressed as Super Mario (including black moustache) until recently, and has since preferred top hat and white gloves, which he dons whenever he has any spare time. He comes into our pub with his mum, and everyone just accepts him for the entertaining lad that he is. All will be well, I am absolutely sure.

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    1. Thank you Tom. I'd love to see that moustache! Also nice to hear about others with the condition, not that I would wish it on anyone. One of the pieces of advice Tourettes Action give to parents, is to buy earplugs.....I have a pack of 30 in a drawer in the kitchen!

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  20. Hi Em, sorry to hear that you and your family have been having such a hard time of it. I don't know much about Tourette's but I did read an article recently about an American actor named Dash Mihok ('Silver Linings Playbook', the TV show 'Felicity') who also suffers from it. He has talked about his acting passion sometimes giving him the opportunity to control his tics by the level of attention that his work demands. It would be interesting to see if OB's touch of Asperger's Syndrome involves an increased level of focus on his favourite tasks, and whether or not his tics emerge as much when he is engaged with those things. Just some random thoughts - I'm not a Doctor, nor a sufferer, just a well-meaning voice reaching out through cyber-space to someone I respect! Thanks for your honesty and for sharing in such an informative way - despite all your worry, your photos still look amazing, especially the eye, the pregnant mumma and the group huddling in the rocks from the wind.

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    1. Absolutely right Christian - when he is totally focused on something, the tics almost disappear. Homework is a good one and sometimes when he's playing a computer game it can have the same effect. If so, I let him have longer than the allotted half hour, but at other times, the computer games can make the tics worse. I can't tell him to stop or it would look like I was punishing him for having the condition. Very difficult. He is having drumming lessons, which REALLY helps and we have all clubbed together and bought him an electronic drum kit for Christmas where he can plug earphones in and drum away without disturbing our neighbours (or us). Well meaning voices through cyber-space are much appreciated - thank you!

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  21. So sorry to read that OB has this syndrome and what a bummer that the Head Teacher is leaving. On the other hand, you could find the new person is better. Get your son to Gr. Orm. insist on it, you are entitled, you just need to make a nuisance of yourself and they'll send you to shut you up :) I think more people are aware of this condition these days and accept it, especially youngsters, for that I'm sure OB's class mates support him in the most part. Let us know how things go won't you.

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    1. His class mates are great but two of his best friends have left recently which has been really tough on him. Gt. Ormond Street won't see us until we've exhausted local resources which I hope we'll do pretty quickly!

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  22. Its dreadful that any child should have to suffer such a condition Em.
    I read that it can improve with the person's maturity. I do hope that this is the case with OB.

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    1. Thank you Roy - we do too. Our South West Tourettes group contains adults and children with the condition of varying degrees of severity. We have everything crossed for it petering out in his late teens but can't guarantee anything.

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  23. Therapy on your doorstep Em. You aren't moaning - you are coping. You have my e-mail - drop me a line anytime. xxxx I'll send you my mobile - texting helps xxx

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    1. Thank you! You're right - the moors are a big help.

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  24. I'm so sorry you and your family are going through such a dreadful time and its very brave of OB to let you talk about it. Such a shame that your supportive Head Teacher is leaving - as someone else mentioned it might be helpful if she could leave some information for her replacement. Its appalling that its taken so long for you to to get some help and treatment (my daughter had CBT during her time in the sixth form when she was suffering from very low self esteem and depression. It did help her a lot but I'm afraid to say the waiting list on the NHS round here was that long we had to pay for her treatment.) I just hope you can get it soon for OB and it helps and I'd really try and and push for treatment at Ormond Street Hospital. I hope you can get his tooth problem sorted out soon too.

    You have taken some wonderful photos as always despite the pain you must be feeling.

    Thinking of you.

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    1. The tooth is SO much better today. No pain killers required at all thank goodness.

      So glad to hear CBT worked for your daughter. We have high hopes for it for OB but it needs to be with someone who specialises in Tourettes. I fear Gt Ormond Street is the only place that does this so we will be pushing HARD. Thanks so much for your good wishes. x

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  25. Oh Em, I do feel for you, and for OB. If it's any help, a great blog I follow about the life of a wonderful woman called Sarah Weston who trains horses using the Monty Roberts "intelligent Horsemanship" method has Tourettes and is also asperges. She recounted recently getting caught when she was doing a live TV presentation with the "wrong words" coming out. Her blog is http://sarahwestonrecommendedassociate.blogspot.co.nz/ and OB might enjoy reading it.
    You are not moaning, you are sensibly getting another (lots of other) opinion and support you need. We'll all be "Aunts" for him, and supports for you. Be strong.

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    1. Just been to her site Virginia - thank you. I can't see how to leave a comment or perhaps she doesn't do comments. I'd love to actually send her a mail or something. I'll persevere! Thanks so much - I really appreciate your words and your auntiness! x

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  26. Em...
    I can't find your e-mail, did I ever have it ?
    I would like to e-mail you about my son.
    angryparsnip at gmail dot com

    You and your family are in my heart
    cheers, parsnip

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  27. Hi Em, thank you for sharing this very personal and touching post about OB. Thank OB also for letting you tell of his experiences. I know very little of Tourette Syndrome and I can't help but think that sharing with us out here has got to be a good thing, educating as many as you can and teaching us that this is a very real condition. I applaud you both. I am happy to hear you are finally getting somewhere. I have a niece who was diagnosed with a cousin of MS and it was a long road to get to that point. She also found an online group of people with the same illness and it was an enormous source of help and support.

    Your ponies by the way, and other photographs, continue to be a delight every time I visit.

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    1. We have a Tourettes group which meets once a month, or will do - it's only been set up for a couple of months! OB finds it a huge support, even if he comes back from meeting others having picked up their tics. It's almost like a tic-sharing forum!

      So sorry your niece has been through troubles too and lovely to hear from you Denise.

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  28. p.s. and ups! nearly forgot that I feel for Ob and his abscess tooth. Having suffered from these in the past I know how painful they can be and do hope he gets relief from it quickly. Also the same for your poor hip. I've had those problems too :(

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    1. Hip is massively better thanks to persistently walking it off and the tooth is much better now after lancing and pushing out masses of bloody pus.......nice.

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  29. My dear Em, I have just arrived home, read your comment on my blog & headed right over to visit you here. It most certainly has been a struggle for you all since this has begun, and hopefully now a relief that you both are open about the Tourettes & Aspergers. I am so *sad* why the Head has had to leave just this time now, however hopefully the path has been opened with her support to head towards better things and understanding. I do believe the more we can spread the word about such matters, that the less ignorance there might be. Also there might be one person that reads one of your posts that it reaches out and speaks to them giving them HOPE they are not alone. How awful OB has had to have such a dreadful time with an abscess, this is one pain I have never forgotten myself when having it happen to me a couple of times. Thank goodness it is a baby tooth. Hugs to both of you. xxx

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    1. Hugs to you too Cindy and thank you. xx

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  30. Em , it's good that you can speak about how you feel and share it . I think we all become much more aware and hopefully better educated , understanding and compassionate, by those brave enough to share trials and tribulations of paths that need to be better understood.

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    1. Absolutely Willow. When I think back to how things were in the 1970's, when I was a child, it makes me shudder.

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  31. I am sorry I am late to this but just want to say how grateful I am for this very moving post about your experience withTourettes, It must have been hard for you to write but I hope it is like a release being able to share with others. I hope you will continue to do so. I heard a young woman on I think it was Woman's Hour earlier this year, she had Tourettes and she was so positive and at the same time she was educating us about it. Push, push, push for all the very best treatments - I know you will. I hope OB's tooth problem is sorted, best to have it out. And I hope you are feeling better too. I have to say your photos here are amazing. (( ))xx Cait

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    1. Thank you Cait. We have everything crossed that his Tourettes might fade in his late teens. So far his progression has been classic for a childhood onset so we might be lucky. We will be pushing but it's so tiring and stressful. It shouldn't have to be like that but it is unfortunately. What's worrying is that those less inclined to push will be missing out completely.

      The tooth is better but OB said it was hurting a bit yesterday.....we have a prescription ready in case it flares up over Christmas which would be so typical!

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  32. oh Em, just getting to this now.... what a load you've had to bear. I'm glad you've shared this here, it's not moaning. It's a great way to process what you're going through and hopefully find some support and knowledge from others. I have no words of wisdom, only virtual hugs. OB is lucky to have you.

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    1. Thank you for those hugs! Very much appreciated. x

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  33. I think my ticks diminished when I smoked and drank (way too much) I quit smoking and quit almost completely drink and dang the twitchy thing is back. It need not be debilitating by any means, of course I think mine is milder than some.

    Also I have a good friend whose son has Asperger's. Great kid. Very literal like you say and somewhat socially awkward...also VERY smart! He graduated from college last year, has a steady girl and a good job. He is way less awkward socially, if not completely cured of that deficiency. Sweet is not how I would usually define a lad, but yes he is a sweet kid. So many things wrong with society today, one is not peoples inability to accept and nurture differences. At least I hope that is true and not just my perception.

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    1. OB is super smart too. He can solve a Rubik's cube in 22 seconds now and is trying to get faster......thanks so much for your comment. Always nice to hear from people who have the same condition. Perhaps I won't mention the smoking and drinking to him though!

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Thank you so much for leaving a comment. It's great to read them and I will always try to reply.