Still wearing the mouthsplints almost constantly, mornings seeeeem slighly calmer but difficult to say. Jury is out until we have consistently worn it for a few more weeks. Jan - March will be the time when we can really see if it is helping as this is when the tics are at their worst.
Boys have missed a couple of days of school due to severe persistent tics. Joe has had a couple of very difficult mornings but we have baked cakes and cookies as a calmer and he has got to school later in the morning taking in some goodies with him. I think the LSAs are enjoying the homemade produce.
One day we had 5 trips to school ! A bit more time consuming than at primary which was just across the road !
Poor Ben strained his back last week having tics at school and the last two nights bedtime tic attacks have taken their toll. We ended up at A&E last night with him because he was very distressed and the tics 'attack' the area that is strained. We have seen this with Joes calf and ankle tic. Such a cruel disorder, its so awful to watch and there is absolutely nothing you can do except try to distract, try calming measures. The doctor said he had strained some muscles which he needs to rest. No lasting damage but he has been prescribed a stronger pain killer to use alongside Calpol in an attempt to control the pain and get the tics to LEAVE HIM ALONE !!!!
Only admiration for school, constant regular communication from tutors, LSAs, head of year. As a result of this the boys remain feeling safe and secure and have triumphed. They are managing to keep on top of homework which we though could be an issue. Ben had a high grade in a science assessment and Joe top of his class in maths. This despite having missed so much school in the last 4 years. Proof that these boys are determined and want to learn despite so many difficulties.
I would like to give a mention to Jamie a TS friend of Joe and Ben who has had an extremely difficult time over the last few months. He has been in a wheelchair and now the tics are affecting his bladder. He is another bright, friendly positive smiley boy - well done Jamie keep smiling. Lots of admiration to Rachel his mum whos time is taken up phoning all the professional services that somehow dont talk to each other and co-ordinate things. Such a stressful time, but admiration for Jamies school who are being extremely supportive.
We have examples here of two schools who are going the extra mile for these children. Thank you, thank you, thank you. :)
Wednesday 19 October 2011
Thursday 6 October 2011
Mornings in the ticcy household :)
Ok, boys tics increasing mornings beginning to be veeerrrry stressful !
Not every day is the same which makes it worse because you never know what is coming ! We are treading on eggshells until we get to school.
Ben currently has problems lying his head down at night. He cannot stand the feel of his sheet on his head, we tried a velvet pillow ok for a while, not any more. Covered the pillow with a towel, nope. Fleecy blanket ? Nope. Dressing gown, yep ok thatll do then until his tics get used to it and wont allow him to put his head on it. Triggers severe vocal tics.
He is waking up in the morning shouting, yes shouting. Tics as soon as the poor kid opens his eyes. Shouts are so loud Im seriously considering wearing his ear defenders.
Joes tics also on the increase, yesterday couldnt wear his school shirt tucked in, couldnt do the top button up and couldnt wear his tie. This really distressed him as he wants so much to fit in and be 'good'. He is frightened he will get into trouble despite being told its ok. As a consequence of this in the mornings, his tics are setting off. Again very vocal, shouts, rada rada.
Breakfast in our house is not a calm affair as you can imagine - or can you?
Im not sure anyone can imagine or begin to understand it if they havent lived it.
We then attempt to get in the car - can I drive with two ticcing children shouting their heads off ? I have to - there is no option. All this before 8am.
This is what our mornings are like at the moment, welcome to our world.
I see all the kids walking to school laughing, jostling each other, having a really nice time. It makes me very sad for them, they are missing out on so much. Yet despite this they continue to smile, continue to join in lessons and remain positive.
I was told today that Joe was really ticcy in maths and the LSA really felt he should have a break but he refused to leave because he loves it so much. Well done Joe - very proud.
Ben had a note written in his home school book that despite the difficult week he had last week, he remained smiley, positive and polite. Well done Ben - very proud.
Mouthsplints? Well we are still seeing a little difference. Bens severe vocal tics are normally accompanied by severe body tics, thrashing around. This doesnt seem to be happening, its just mainly vocal.
Joe cannot wear his at the moment due to it rubbing so he has gone on a whistlestop tour of Torquay today to get it sorted. Evidently he couldnt walk at all without kicking his calf severely on the way and his dad had to give him a shoulder carry. However, wearing the splint on the way out, he has walked to the station. He is kicking his leg but not as hard or severe. So maybe just maybe ......... Im not religious but I might have to start praying :)
Not every day is the same which makes it worse because you never know what is coming ! We are treading on eggshells until we get to school.
Ben currently has problems lying his head down at night. He cannot stand the feel of his sheet on his head, we tried a velvet pillow ok for a while, not any more. Covered the pillow with a towel, nope. Fleecy blanket ? Nope. Dressing gown, yep ok thatll do then until his tics get used to it and wont allow him to put his head on it. Triggers severe vocal tics.
He is waking up in the morning shouting, yes shouting. Tics as soon as the poor kid opens his eyes. Shouts are so loud Im seriously considering wearing his ear defenders.
Joes tics also on the increase, yesterday couldnt wear his school shirt tucked in, couldnt do the top button up and couldnt wear his tie. This really distressed him as he wants so much to fit in and be 'good'. He is frightened he will get into trouble despite being told its ok. As a consequence of this in the mornings, his tics are setting off. Again very vocal, shouts, rada rada.
Breakfast in our house is not a calm affair as you can imagine - or can you?
Im not sure anyone can imagine or begin to understand it if they havent lived it.
We then attempt to get in the car - can I drive with two ticcing children shouting their heads off ? I have to - there is no option. All this before 8am.
This is what our mornings are like at the moment, welcome to our world.
I see all the kids walking to school laughing, jostling each other, having a really nice time. It makes me very sad for them, they are missing out on so much. Yet despite this they continue to smile, continue to join in lessons and remain positive.
I was told today that Joe was really ticcy in maths and the LSA really felt he should have a break but he refused to leave because he loves it so much. Well done Joe - very proud.
Ben had a note written in his home school book that despite the difficult week he had last week, he remained smiley, positive and polite. Well done Ben - very proud.
Mouthsplints? Well we are still seeing a little difference. Bens severe vocal tics are normally accompanied by severe body tics, thrashing around. This doesnt seem to be happening, its just mainly vocal.
Joe cannot wear his at the moment due to it rubbing so he has gone on a whistlestop tour of Torquay today to get it sorted. Evidently he couldnt walk at all without kicking his calf severely on the way and his dad had to give him a shoulder carry. However, wearing the splint on the way out, he has walked to the station. He is kicking his leg but not as hard or severe. So maybe just maybe ......... Im not religious but I might have to start praying :)
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