In a nutshell Tourettes at first to Samuel was a word he did not understand, he thought it was a bug that had somehow got into his body and this bug was what was making him twitch and move!
In just over a year now Samuel is still trying to cope with these sudden movements that happen nearly every minute of every day and for Samuel it is a scary world and frustrating causing many tears.
Diagnosis and Tics
The difference butween a habit and a tic is that a habit normally gradually goes away and oftern occurs for a day, a week or longer, but will disappear. Samuel’s tourettes is a mass of movements called “tics”, not the creature kind thankfully!. Some tics fade away and rapidly increase with new ones starting on a daily basis, but they never go away for good.
What tic came first – the early signs
Blinking constantly was the first tic, followed by sniffing, coughing, clearing throat and snorting.
Then came the more facial tics, the twitching of parts of his face. Just his face alone forms more than 10 tics which include eyebrow raising, grinning, pouting, tongue in or out and a lot of nose exploration!!
After 6 months of having all of these Samuel starting developing more complex movements – stretching his jaw down and jerking his neck back like a constant whiplash injury, this then progressed to his whole head tossing back. This specific tic has become the bane of our lives at the moment as it is the one that causes the most pain, stress and anxiety for Samuel and anyone looking after him.
Make a wish
If a fairy came and visited me tomorrow and said I could have one wish so that one tic could be taken away, out of the 35 or so tics that Samuel has now I would ask that the neck and head jerk be whisked away from Samuel’s life because it is the most upsetting one for Samuel to cope with.
As a parent you feel you are always telling your children to “stop doing that, that’s dirty, stop touching your nose, don’t eat it!” When I think back to all those times – now it is not an issue, I turn a blind eye, its not important really, there is no point in constantly moaning about these habits, Samuel cannot stop them, he can sometimes suppress them, but then more return with a vengenance!
Along with all the movements Samuel has vocal tics which can be various animals – sheep and a seal spring to mind – he will also copy and repeat words/phrases that he hears – thankfully as yet we have not have rude words!!!
Which one is going to come next
That’s a good question – I have asked Samuel just that – does he know which tic is just about to happen. It is really like a sneeze – a feeling he has that something does not feel right, he cannot say which movement will happen, it just happens.
I used to think that once Samuel went to sleep the tics would stop but they still keep on going! It takes along time for Samuel to drop off to sleep, you know yourself when you are trying to relax hoping you will soon drift off……… and then suddenly out of the blue your arm moves or have you ever had the feeling just before you finally go to sleep your heart jumps a beat and you think you are falling off a step!! Well now I think I understand how Samuel feels – Samuels’ body will twitch and jerk, this can be upsetting for him. It usually wakes him up in the middle of the night as well – and then the process starts all over again – trying to get back to sleep!
What a brave boy
When I was a child I would cry at the slightest provocation, what a trial I must have been for my mum, Samuel’s Nana! For any family with any disorder it is always hard to adjust and to understand, specifically for the person who has the disorder, but although Samuel gets upsets and frightened and says “He wishes he did not have these tics” the next morning is a new day full of exciting opportunities waiting to happen and he is starting to ignore some of the tics and just carries on regardless.
Can medication help
Because of the severity of his Tourettes at a young age they are interfering with his schooling/social time and are painful. I am not one for dosing myself on tablets even for a headache and apart from the odd Calpol sachet always avoid medication for the children. On this occasion however we have decided that if there is a medication that can at least manage some of the tics so that they are not as forceful and distressing, then for Samuel’s sake this would help immensly through his education years while he is learning how to adapt and accept his disorder. This is only one of 4 disorders that Samuel has.
Help in School
Well this subject is an article in itself really – the statementing process is a long hard journey I have been told which I have just started so I will keep you posted on that challenge. A special school has been recommended because of the complex disorders he has, however if a specialised one to one person could be found a continuation in mainstream would be another possibility?
If anyone has a story on this please do let me know, keeping positive is definately the key!!
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