Full day at school

Having agreed yesterday that school would do their best to keep the boys in school and get them through their tics we set off this morning, rucksacks full of lunch, snacks, drinks, sunglasses.
yes sunglasses - part of the agreement is that the boys can work outside in the new gardens and environmental areas that are being created.  We got to school and the teachers had kindly purchased some gardening stuff for the boys, watering cans, gloves, trowel, seeds, new pots etc. Some laminated cards with details of daily jobs for the boys to pick out what they could do first thing in the mornings.  Slug hunting was a favourite with Ben !
I went off and purchased some picnic blankets so if they work outside or have lunch they have something nice to sit on. 
Success!  Joe had a pretty good day. Ben had 2 bad tic attacks but got through them, bit tricky but teacher and TA looked after him between them.  well done everyone - lets hope we can carry this on so the boys have a really enjoyable last term at primary.

How proud were we !!

Annual statement review meeting today at school, Ben came in for a few minutes and answered a few questions, surrounded by about 12 adults some of which he had never met before.  Lots of tics during the morning (no he didnt know he was going to do this). Spoke to him about it and he agreed to come, tics all the way over to school and waiting in reception,  during the meeting? none, how scary must that have been? in yet he did it tic free.

Joe came into the meeting too, having been at school his lovely TA talked him through it and came in with him.  He was nervous so had a few tics but remained smiley and answered some questions quite confidently.

Our fantastic boys never cease to amaze us, coping with this cruel, unpredictable condition, suffering often with very severe full body tics, they bounce back time and time again. 

Where do they get this resilience from? Another lovely mum said her daughter often copes with it better than she does. I would agree, often I am at breaking point, but the boys bounce back time and time again.

Well done Joe and Ben you are truly amazing.

Poor Joe

Self esteem, confidence building horse riding session today.  Ben did very well despite a few tics. Poor Joe had major tics after the grooming and was unable to ride at all. Very upset and disappointed.  Luckily Teresa the girl that runs the sessions is very astute and has suggested riding first next week and grooming last.
Life can be so disappointing for people with Tourettes as the tics can come on at any time and stop the most wonderful of activities. Its not just school it gets in the way of - its life itself some days. :(
Tutor this afternoon, Joe worked through a lot of tics - well done Joe. Ben had really bad tics for about 20 mins and then managed to calm down enough to do a good 40 minutes - well done Ben. We would not have had the same outcome with school unfortunately.

another good day

Easter Sunday yesterday, well what can I say, chocolate for breakfast - isnt that what its all about?
A good day for the boys, lots of playing with friends, out and about in the sun. no pressure, no school, no tics. (well just very minor ones)
Up this morning and Ben however is having lots of head and vocal tics, no idea what has triggered it but hoping it will calm down quickly.  Another sunny day, anyone for tennis maybe? spot of Geocaching with dad? (probably not :)  )  Bikes and water guns on the agenda again today I think. Lots of garden badminton and a bit of car washing too ! very active.
Another funny outburst just before tea, extremely loud vocal shouting, so so loud ! thankfully didnt last too long, no apparant trigger other than just finished writing his diary for his tutor.
As I watch them now calmly watching tv, Ben lots of facial grimacing and Joe a persistent right arm tic. Not good for writing either !

good day today

Lovely weather, minimal tics, lots of friends to play with, Joe a bit grumpy on and off due to tiredness I think, but a bit concerned it might be the meds as beginning to see it more and more. Must keep a watch on that.
Cant escape school issues, email today about the summer term. Might join a trial for TMJ treatment along the lines of what we have tried before but without having to use the sticks.  Looking into it seriously, boys seem to be up for it.
Happy Easter everyone :)

oh dear

why is it that after a good day the boys generally pay for it the next?
Joe has a particularly distressing tic today which is making him thump his thigh really hard because he feels like he needs to break the bone. He feels he needs to click it to stop some discomfort and of course he cant. Very distressing, bruises only just gone from his calf muscle where he had a similar distressing tic for about 2 weeks !!

what difference a day makes :)

No tutors, no school, no pressure, boys out and about on bikes pretty much all day, fishing down the local lake with a friend, cycling off to supermarket. No major tics,lots of little manageable ones which didnt get in the way of their day. So lovely to see.  Even a calm night (hope Im not speaking too soon).
So nice to have a postitive day