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

Phew what a day.  Tutor in - tics off the scale for Ben. 2 1/2 hours of full on tics shouting so loud I dont know where it comes from !!  He wasnt able to do anything with the tutor at all, Joe on the other hand managed to work through a lot of his tics and managed some work.  Once this was done, had about an hour before heading off to SEN pow wow.  2 hours of full on meeting, got a bit emotional, stress is really taking its toll now.  Found out a few things that made us feel really angry towards the potential new school, I hope some bridges can be built in the next few weeks as we all need to be able to talk to each other.  Its maddening that there is a process in place for vulnerable SEN children with the statement and getting priority choice of school, but we are still sitting here in the middle of April with a question mark over whether the boys will go to our choice of school or not.  We should be able to feel as confident and secure as other parents do right now.   The boys should be safe in the knowledge that the decision made was the right one and that the school will do their best for them. However they know that something is going on and that we are still looking at schools to make sure we get the right environment.  This all adds to their anxiety, I would love to know how many other SEN parents have gone through the same kind of thing around transition from primary to secondary.

Blood tests this morning as the boys have been on Aripiprizole for a year now. Very brave, worst thing was they couldnt have anything to eat after their tea last night. They were starving !!!
Went to Thorpe Park for a couple of hours afterwards, turned out to be very warm and very noisy. Ben was quite ticcy whilst we were there and was unable to go on one or two of the big rides due to the noise and the waiting in the queue in the sun.  Made a decision to apply for a diability fast pass.  Why not? never applied before, felt uncomfortable about it because I dont really think of tourettes as a disability but it is disabling in many ways.  If Ben had a fast pass today he would have managed a couple of the rides he really wanted to go on without struggling with the tics.  People always seem to glare at the people using the exit passes and you can feel them asking why what is wrong with them?? Its only fair the boys get to enjoy days out as much as any other child would. Another letter to write then.

Tutor arrived at 2.30 tics slowly increased as day wore on.  Didnt help boys had no one to play with today so they were a bit bored, no distractions.  Severe tics during start of tutoring, but hats off to Mrs Leake who persevered without batting an eyelid. Patient, calm and caring but determined to make progress at the same time.  If that had happened at school today they would have ended up coming home and achieved nothing but a feeling of failure. Creative teaching and understanding the capabilities of the boys during tics helps enormously. Just goes to show they can work through them and achieve something. Well done Mrs Leake and more importantly well done Joe and Ben for keeping at it. 
Now, report writing here I come (again !!).

finally finished reports at midnight - sat here wondering if I will ever have a life again outside of education issues.

Good day, minimal tics for the boys
For us? couple of hours writing reports this afternoon, more to do this evening for the up and coming statement review !! Not happy with schools report - lots of exaggeration and reference to strategies used just  in the last couple of weeks. No way a true account of the last 6 months. No reference to managing core weaknesses due to past absences and lack of support during times of absence.  More of our weekend time taken up reviewing and communicating our areas of concern.
Tomorrow - tutor in da house, therefore tics in da house :(

3 more hours on review report - thats only the first report - have another one to do yet. Will start that one tomorrow. I often wonder what I did with my time before I got involved in the world of SEN. Need to sleep zzzzzzzzz

Introduction

As a mum of twin boys aged 11 with Tourettes I thought I would start a blog to record some of the ups and downs in the lives of a family living with Tourettes Syndrome.It is extremely difficult for the boys living with the condition and it puts a lot of stress and strain on the family.
The boys are in year 6 and will be making transition into secondary school in September one area we are already having difficulties with and I would like to record our experiences.
Both boys already find school a very difficult anxiety provoking environment and have missed a considerable amount of school.

My boys are wonderful, happy, funny, sensitive caring children and tourettes can be a cruel condition to live with. 

I hope over the coming weeks I can give others an insight into our world.