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Help with Tourettes please!

boyofsteele

I am not sure if anyone can help with this....I have posted before about issues concerning our son's autistic tendencies, but he was also diagnosed with Tourettes and this now seems to be coming into play more seriously than the autistic tendencies, although I know there are very many overlaps and some consider Tourettes to be part of the spectrum.

What started out as small 'ticks' like throat clearing and repetitive little coughs, eye blinking and mouth-wiping for example, are now changing to more aggressive/more noticable ticks, like whistling in the middle of sentences, very wide mouth opening (causing split corners of his lips) and severe head shakes which hurt his shoulders and neck and cause discomfort and are exhausting for him. 

Coupled with this is huge amounts of aggression, which, again has overlaps with autism, and blurting of very rude outbursts when he is angry.

We were warned that the path might be that the small ticks might increase to where they are now, with a possibilty that they might escalate into inadvertant lashing out at people. He already lashes out at us in anger, but it is our very real worry that the Tourettes side of things will lead to the next stage and begin to involve others. His teacher at school has been distressed by the violence of his latest ticks, but at school, his behaviour issues are kept at bay, with this exception.

Does anyone else have a child that suffers in this way, as our son truly does suffer as he struggles to make sense of why he behaves like this and we are suffering from the worry that we do not know how to help him adequately.

Obviously I can do my own research, but I would be really appreciative if there is someone who could reply if they are having a similar experience! Many thanks!

Parents

  • Dear Katherine,

    Thank you SO much for your honest and frank reply. It has really helped us reading your comments. I can see how the environment can affect anxiousness and I know, from knowing our son, that this is true of him too. Unbelievably, and luckily, the children at school don't seem to be behaving differently to him, or even really noticing his ticks too much...at least, he has never said that they have noticed or commented on it.....am I right to assume that because he hasn't mentioned it, that they haven't? As I'm writing this, I am thinking immediately how stupid I am not even asking him to check that this isn't a big cause of concern to him. For our part, we are totally accepting of his ticks and draw no attention to them at all and when he brings them up, saying that they hurt or that he has no control over them, we gently reassure him that they will pass eventually and that it is absolutely ok and that he is handling it really well...but then we pass on as quickly as we can to 'normal' conversation. Do you think I should ask him about the other children, or will this bring too much attention to the situation so that he begins to look for reactions form his peers?

    I think the squeezy thing is a great idea...we have talked in the past about a stress ball type thing, which I think we should pursue...something for him to carry around with him. 

    I hear what you are saying about giving him a quiet time and space to tell him how we feel about him and totally agree with it and see that it is the right thing to do....When we are going through a 'bad patch' with him (and it does tend to go in waves) he can be so unpleasant and rude and cutting and aggressive towards me and I get very upset at myself for feeling so hurt and cross with the way I get spoken to a lot of the time but I find it really hard to see the wood for the trees. In calm, rational moments, I KNOW his behaviour is out of his control as a result of his Tourettes, and that he needs to know that I know that....but I struggle with separating the two a lot of the time; I go into protection mode for my younger son, who takes a huge amount of flack, and I constantly feel as though everything I do gets thrown back in my face and feel as though he doesn't love me at all! I know this is ridiculous and it is me that must change. Reading your comments has really made me think about how I must deal with this better. 

    My overriding fear is that he isn't a happy child lots of the time....do you have any thoughts on that from his perspective? ( A very hard question I know as you don't know him...but from your experience?)

    Thank you for taking the time to write what you did. Take good care of yourself,

     

Reply

  • Dear Katherine,

    Thank you SO much for your honest and frank reply. It has really helped us reading your comments. I can see how the environment can affect anxiousness and I know, from knowing our son, that this is true of him too. Unbelievably, and luckily, the children at school don't seem to be behaving differently to him, or even really noticing his ticks too much...at least, he has never said that they have noticed or commented on it.....am I right to assume that because he hasn't mentioned it, that they haven't? As I'm writing this, I am thinking immediately how stupid I am not even asking him to check that this isn't a big cause of concern to him. For our part, we are totally accepting of his ticks and draw no attention to them at all and when he brings them up, saying that they hurt or that he has no control over them, we gently reassure him that they will pass eventually and that it is absolutely ok and that he is handling it really well...but then we pass on as quickly as we can to 'normal' conversation. Do you think I should ask him about the other children, or will this bring too much attention to the situation so that he begins to look for reactions form his peers?

    I think the squeezy thing is a great idea...we have talked in the past about a stress ball type thing, which I think we should pursue...something for him to carry around with him. 

    I hear what you are saying about giving him a quiet time and space to tell him how we feel about him and totally agree with it and see that it is the right thing to do....When we are going through a 'bad patch' with him (and it does tend to go in waves) he can be so unpleasant and rude and cutting and aggressive towards me and I get very upset at myself for feeling so hurt and cross with the way I get spoken to a lot of the time but I find it really hard to see the wood for the trees. In calm, rational moments, I KNOW his behaviour is out of his control as a result of his Tourettes, and that he needs to know that I know that....but I struggle with separating the two a lot of the time; I go into protection mode for my younger son, who takes a huge amount of flack, and I constantly feel as though everything I do gets thrown back in my face and feel as though he doesn't love me at all! I know this is ridiculous and it is me that must change. Reading your comments has really made me think about how I must deal with this better. 

    My overriding fear is that he isn't a happy child lots of the time....do you have any thoughts on that from his perspective? ( A very hard question I know as you don't know him...but from your experience?)

    Thank you for taking the time to write what you did. Take good care of yourself,

     

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