Wednesday 17 April 2013

Tough days

It's been a tough few weeks.  I always get into a bit of a funk in the school holidays.  I love them, of course, but I find it really difficult to motivate myself when the structure and routine of a normal working week are not present.  Add on a much-calmer-but-glued-to-the Xbox teenage boy and a daughter at work most of the time, and serious lack-of-adult-conversation funk sets in.  Add on relentlessly arguing siblings when they are in the same house together for even a minute, and I'm verging on insanity.

In the midst of all that, we got an appointment, at long last, to see the Tourettes specialist.  It was good and bad.  Finally we have an Official Diagnosis, and finally CAMHS are now sitting up and taking notice, and our next appointment to discuss treatment is in 2 weeks!  All good.  Not so good is the fact that the Swedish doctor was a little forthright in her approach.  In the space of ten minutes she had told Milo that he has Tourettes Syndrome and that there is no cure, she would be ringing the school the next day to involve them in treatment strategies, and she was enrolling him in Group Therapy from September (not sure how that can possibly help 6 months on from now...but still...)

Cue one major meltdown for one very troubled small boy.  His worst fear, just the worst thing he could possibly have imagined, was the school finding out and treating him like a 'freak'.  I did, in fact, tell the school nearly a year ago, but I hid that from Milo.  They were brilliant in also hiding from him the fact that they knew, but monitored him from a distance.  Next major fear was group therapy.  None of us are the 'group' kind.  We're introverted and shy and not particularly comfortable around lots of people.  My daughter and I are pretty independent and happy in our own company - we'll go anywhere and do anything by ourselves - dance classes, trips, evening classes...but the whole social thing...hmm....we do it if we have to, but will escape it if we can.  For Milo...the very idea of it ...well, he'd rather chop his arm off.  Top it all with having to face the fact that he has a disorder for which there is no cure...wow....that's a helluva lot to take on board in one go.

I just hope this doctor knows what she is doing, because for six days now, my poor son has been in a meltdown, even the Xbox isn't working on keeping him calm.  His tics have trebled in volume and frequency to the point where I can go out of my garden gate and to the other side of the car park and still hear him as clear as day.  I'm feeling bad for the neighbours - we have paper thin walls, and if I press my ear to them , I can hear their conversations.  They must be almost as stressed as we are, and I'm dreading the doorbell ringing.

I've ordered us some ear plugs today.  I don't know what else to do right now.  I know he can't help it, I know that, but the urge to scream is overwhelming.  I'm trying to stay in control and keep calm, and keep telling myself that this will pass, but I want to curl up in a ball and howl - the stress of the noise, the heartwrenching sight of his contorted little body, his poor little broken heart.....it's too much right now.  Am just praying for the strength to get us all through it.

On a positive note, I've made a smoothie for breakfast four days in a row now.  No other dietary changes yet, I don't think I can cope this week with going back to work aswell.  A childfree weekend on its way though, hopefully chance to restore some balance to my troubled soul.

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