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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

  • I'm sorry for delay in responding to your questions... the site does not email with the discussion and I don't login often. I think you are bearing a lot on your own and with your family. I really hope for you some support and space to talk about your own stresses and concerns around this with someone who is not going to judge you. Your son is very young and it's hard to be a parent and know how to communicate, especially when it sounds as though you have a very different way of percieving the world. I know that my mother was very alone in bringing me up and this made it hard for her to be with me. I think this is a problem in our culture and not just for families with children who have neurological differences. I would be as gentle as you can with yourself. Your son may well not be happy at times... if you can bear with him in his pain rather than hurting yourself or beating yourself up for not being able to fix it then perhaps you will find a way to share the stress...? I don't know? I think a lot of people feel their kids should be happy all the time. Yours son's stresses and yours are linked to wider networks, are you getting enough? Company, support, time...? For my part I feel discomfort a lot of the time what really helps it to pass is gentle company and knowing I am not the only one who struggles! I think it makes total sense to have feelings of hurt and anger when your son behaves the way he does towards you, your feelings are as natural to you as his behaviour is to him. My feeling is that crushing your experience will not help him to have his, you can both exist and work hard on understanding your differences. As he gets older he will need to understand your differences too. I don't know about the children at school... perhaps trust yourself to decide and see what happens. If this makes any sense I suggest trying to stay 'open' you are learning all the time as a parent it's not easy. I know that. I've worked hard forgiving my parents, they have their story and I have mine. Ok I've said a lot... I hope there is some company in this for you, I wish you well. I felt glad to see your response and I'll try and keep track of the discussion as I can. There is some interesting ideas about tourette. Put simply that we shout/express what other people don't say! I think it's a funny thought and it makes sense. I have a tendency to spit a lot around my father who I'm sure is secretly furious with me and never says anything! I don't spit with everyone and on my own I notie I do it when I'm angry or disgusted... uncontrollably. So we keep going the same way! I spit he pretends everythings ok... it's all there between us... 

Reply

  • I'm sorry for delay in responding to your questions... the site does not email with the discussion and I don't login often. I think you are bearing a lot on your own and with your family. I really hope for you some support and space to talk about your own stresses and concerns around this with someone who is not going to judge you. Your son is very young and it's hard to be a parent and know how to communicate, especially when it sounds as though you have a very different way of percieving the world. I know that my mother was very alone in bringing me up and this made it hard for her to be with me. I think this is a problem in our culture and not just for families with children who have neurological differences. I would be as gentle as you can with yourself. Your son may well not be happy at times... if you can bear with him in his pain rather than hurting yourself or beating yourself up for not being able to fix it then perhaps you will find a way to share the stress...? I don't know? I think a lot of people feel their kids should be happy all the time. Yours son's stresses and yours are linked to wider networks, are you getting enough? Company, support, time...? For my part I feel discomfort a lot of the time what really helps it to pass is gentle company and knowing I am not the only one who struggles! I think it makes total sense to have feelings of hurt and anger when your son behaves the way he does towards you, your feelings are as natural to you as his behaviour is to him. My feeling is that crushing your experience will not help him to have his, you can both exist and work hard on understanding your differences. As he gets older he will need to understand your differences too. I don't know about the children at school... perhaps trust yourself to decide and see what happens. If this makes any sense I suggest trying to stay 'open' you are learning all the time as a parent it's not easy. I know that. I've worked hard forgiving my parents, they have their story and I have mine. Ok I've said a lot... I hope there is some company in this for you, I wish you well. I felt glad to see your response and I'll try and keep track of the discussion as I can. There is some interesting ideas about tourette. Put simply that we shout/express what other people don't say! I think it's a funny thought and it makes sense. I have a tendency to spit a lot around my father who I'm sure is secretly furious with me and never says anything! I don't spit with everyone and on my own I notie I do it when I'm angry or disgusted... uncontrollably. So we keep going the same way! I spit he pretends everythings ok... it's all there between us... 

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