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