I need some advice with parenting! PLEASE!

[Skins]

Hi, my 7 year old son has one particular tic which is causing problems. At least once a day, normally at home, where no one else can see him, he gets the urge to hurt me, either punch, kick, bite, scratch or pinch, mostly a combination of them all. I restrain him and sometimes manage to turn it into a tickle fight. He has no anger with these attacks and apologizes after and sometimes during the episodes, which normally last about 20 mins. He is always sorry after the event and says it's his 'habit' (his description/name for tics). He is already big for his age and I'm concerned that soon he will do some real damage to me or himself. I have read in many places not to punish tics and generally are able to manage this for all other of his habits, however I really want to stop/reduce this tic for safety reasons,,,,,, does anyone have any suggestions. I eventually have 1st CAMHS meeting next week so hopefully they can also help, however I have heard varying reports on their efficiency and most of the useful help and support I have received has been from this site.

I would be interested to hear from anyone who has had similar tics or parents who have had to deal with them.

Thanks again for a site that makes me feel not quite so alone.

[Suz13 Volunteer]

HI There

You are definitely not alone with this issue as several parents tell us of similar behaviors so might like to join the Tourettes Action Forum on tourettes-action.org.uk. Its really difficult but he must understand that this is not acceptable and perhaps you could look at ways in which when he feels the urge to hurt you he diverts his rage onto some inanimate object like punching cushions etc. You don't say if there is any particular time that this happens; if so that might be useful in finding something that diverts him. Turning it into a tickle fight really makes it fun and so can encourage him to continue. You have to start by you and your partner letting him know that this tic is unacceptable and that it makes you very upset.

Hope this helps a little bit.

Suzanne

[Skins in reply to Suz13]

Thanks for your reply Suzanne.

I have joined the forum you suggested, just knowing that you're not the only ones out there definitely helps. I must admit the support from the NHS so far has been virtually non existent and we do feel as though we are bumbling through on our own trying to come up with strategies that work for us. I tend to find that this particular tic nearly always happens at home as we are trying to get ready to go out. My son is fairly good at suppressing tics when out and about, very much his choice. So I believe that he is trying to release as much as possible before we go out. We will be firmer with him about this tic, we have probably been too lenient with him after a severe bout of guilt as we had been telling him off for making noises and ticcing before we realised what was going on.We have had no diagnosis of TS just transcient tic disorder. A great deal of research and some off the record confirmation from the Paediatrician lead us to the conclusion that we must go a year with symptoms before we can have formal diagnosis.

Thanks again for your help.

Kate

[tourettesparent]

Hi,

I can only echo the previous comments from Suzanne. Diversion techniques are a very good way of trying to re-route a tic but you will need to 'hang on in there' until the messages gets through! It can take time. My 11 year old develpos tics from time to time where things could endanger his safety and that of others such as switching plugged in electrical items on and off multiple times really quickly, trying to re-cross a busy road twice (he tries to do everything obsessively in groups ofn 2, 4 and 8 etc) with no mind to the trafftic to re-tap the pavement on the other side and trying to walk around the outside of lamp posts into the traffic. I always expressed my express dissapproval of these particular 'habits' and managed to keep him safe by watching him like a hawk and stopping him achieving his goal with the traffic tics. I can't trust him to walk on his own (he is also slightly autistic), but through consistent, firm insistance that he not do these things, he has stopped launching himself out into the traffic and seems to have dropped the urge. The switchy tic I monitor using other methods but all requires time and consistency. I'm afraid stopping particular unacceptable tics is hard work but keep expressing the fact that you find it unacceptable and eventually, hopefully the message will get through. If you can try to get your child to recognise and describe the 'feeling' BEFORE he gets the urge to lash out at you that would also help. My son describes the urge to do any tic as a 'burning' feeling before he does it and that feeling doesn't go until the tic, or obsessive routine is complete. I have also described to him how upset it makes me feel when he puts himself in danger whilst letting him know that I know he isn't doing it on purpose. Amazingly he has sometimes used that as motvation to lessen or stop particular dangerous habits and tics.

Even though he is young, maybe you could describe to your son how it makes you feel when he hurts you whilst letting him know that you know he isn't doing it out of being 'naughty' and try to keep the tone of the conversation positive. It is such a fine line that we walk as parents of ticcy kids.I have always been worried about and been careful not to create situations which would give my son low self esteem We have to ignore so many unusual and uncomfortable things but need to know that it is ok to make a stand against certain unacceptable behaviours. Diverting your son onto another actvity such as punching a pillow is such a good idea. I agree with Suzanne that even a tickle fight could carry on the idea that the activity could have roots in being fun. Better to totally divert it elsewhere into another activity more acceptable that still enables your son to work out the tic but in a different way. It's hard though making this happen. Maybe you could ask your son some of the things HE thinks he could do instead. Then he has more ownership of his diversion technique. We found when our son came up with a diversion technique or activity, we achieved a much higher level of succes. If he is unable to make suggestions, you could offer a variety of alternatives and he could choose one he likes the most. If one fails, try another. If he is also able to start to recognise the signs of the trigger or the feeling before he does this unacceptable tic, he could possibly eventually go straight to doing the alternative activity instead of hurting you. I've just had an idea.....!Something to think on....... One of the things he might be seeking as part of the routine of this unacceptable tic is your reaction to what he is doing aswell. If you can keep to the minimum of response to what he is doing (whilst still letting him know that what he is doing is unacceptable) ie keep face and body language impassive and vocal tone flat, that might help too. (I've no idea if that could be the case though. I might be completely wrong)

The thing is to choose your habit to try to reverse. My child has 65 + habits and obsessive routines, most of which are harmless or just unusual or time consuming. We are lucky because we are receicving excellent treatment from a consultant and we have a fantastic habit reversal therapist who works with our son. Habit reversal therapy is a great idea and the older our son gets, the better we think he will get the idea. Services throughout the country can be patchy though. Where we live is not really geared up for any kind of help with Tourettes, so we travel to Nottingham about an hour away. The staff there are brilliant.

You don't say if you have been referred to a consultant yet. If you haven't, I recommend you do that. Tourettes Action have a full list of consultants and specialists. Present your GP with a name and place where you would like to be referred and it makes it so much harder for them to say no. We went to see a CAMHS nurse who admitted the services they offer aren't really for the treatment of Tourettes. What they did say was that if our child ever suffered from excessive anxiety, depression etc as a result of having Tourettes, they would be happy to assist us. They also acted as someone to lean on whilst we were getting a Statement of Educational Needs for our son. See what they can do to help. Different CAMHS providers might be able to offer different services. Our son's habit reversal therapist is also a qualified CAMHS nurse who has also specialised in Tourettes. We asked him if refusing to accept particular dangerous tics and habits would do any harm to our son. His advice was that not every tic can be ignored. We worked out a way that if we said to our son that this is a 'MUST' thing that can no longer happen, then that was a consistant way of letting him know that this type of tic is unacceptable. We say, this is a 'MUST THING' and although he doesn't like it, it is a clear way to let our child know that we mean business. We also explain WHY he cannot do it, and repeat this at regular intervals when necessary. More often than not, we have had a good success rate in turning things around. When we haven't achieved total success, we have at least achieved a reduction, sometimes significantly, in the severity or number of times the unacceptable tic happens. It isn't a finite science.

My husband and I are no experts by any means and I often feel as though I'm blundering my way through each day. I didn't even know anything much about Tourettes Syndrome until a year ago when our son was diagnosed, and even now feel as though my son and the specialists he encounters have a lot more to teach me about it! All I know is that we all try our best to help our kids and try to do the best for them. We found that the more physical activities and exercise our son gets, the less ticcy he is sometimes is. He goes swimming, a daily walk, trampolining and horse riding and is usually more relaxed after each activity. Some sort of physical activity could possibly help divert negative energy into more positive activities It won't work for everbody, as each person is different, but any port in a storm!

Tourettes Action have some wonderful material and reccommend some good literature. They are also there at the end of a phone. If there is a support group nearby, or one you wouldn't mind travelling to, pop along to see them. I'm not usually a 'join a group' type of person. How daft I was! We don't have a group near us, but drove 40 minutes away and found a new group that was just being set up. What a revelation! It was so good meeting other parents of children with Tourettes, comparing experiences and swapping information. It was such a relief knowing that there were other people we could talk to who knew what we were going through.

I hope that somewhere in my ramblings that there might be something that can help. I wish you all the best. Good luck!

[Skins in reply to tourettesparent]

Wow! Thanks for the in depth reply... you should write a book!

We will definitely try the pillow, I must admit at the moment he isn't the most co- ordinated so I have not thought about a punch bag etc as he is not that accurate yet and I didn't want him perfecting his technique ready for me!!!

I have talked with him about how his attacks make me feel, if he is not trying to hurt me talking about it seems to be a trigger, his tics seem very suggestive especially these.

I have joined several forums and initially really liked the idea of a support group. I'm not normally a group joiner either, but after feeling quite let down and alone with the NHS (or lack of) provision I decided that maybe a group would be an idea. Unfortunately the west midlands group has a regular attender who was an ex pupil of mine and I don't want my private life being the latest topic of school gossip, so if there is one especially for parents I would be very interested.

It is interesting what you mention about the motivation for these attacks, he nearly always apologises and says that if it wasn't for his habit he would not do it, but he does seem very interested in whether it hurt me or not, I don't know if this is to help himself control his tics as he doesn't want to hurt me or that causing the pain/hurt is the motive. His normal tics a very repetitive but during a violent outbreak there is a theme ie punching or kicking however these can vary during the episode.

We do have a 'unacceptable whether a habit or not' type phrase that lets him know he really should try to control his tic and it is not safe behaviour. However after a number of weeks of telling him off for making strange noises and actions before we understood what was going on, the guilt set in. Myself and my partner have discussed it and if this violent tic has to be released we would prefer it was at home aimed at us rather that a school mate or even teacher. We would obviously like to reduce it as much as possible and can see how a tickle fight may encourage it. We have been trying to maintain, his actually very good self esteem, as he was distraught after the first few episodes saying how ashamed of himself he was and he was scared that I wouldn't love him anymore and in fact that he may kill me one day.

This is why we have tried using the tickle fight as it causes him less distress, but a pillow should have the same effect.

Thanks again for your reply, and I wish you good luck with your son. Maybe we will meet one day at a parents group!

Kate

[tourettesparent]

Hi Kate,

Thanks for your reply. You sound as though you are doing lots of good things already without any support from the NHS. It's a shame you are not being given the support from your local health authority. We had to push our GP to refer our son (it took over 6 months). I think it all depends where you are in the country because once we were given a paediatrician's appointment, it all took off. His escalation in symptoms had been less than a year. The paediatrician was very thorough and gave an initial diagnosis of Tourettes with possible OCD and Autistim which needed investigation. Our local health trust turned us down for any further investigations and said just concentrate on the Tourettes! I ask you! Autistic spectrum disorder can have a significant impact on how Tourettes is treated and what therapy is offered. When we saw the paediatrician a second time we were prepared whith names and venues of the places we would be willing to travel to, as locally there was zilch help. The locum paediatrician was very good.We were referred to see a conultant at Queens in Nottingham (from previous other posts on this forum I have read that there is a good hospital in your neck of the woods) and from then on we felt as though we had been given the holy grail of help and treatment. On our first appointment we were offered Habit reversal therapy. The staff try to give us appointments in school holidays (husband and I are both teachers) and his HR therapist offers to skype us between appointments. We can even email the team at the hospital if we need any advice. It was great to feel as though we had someone to help us.

Over the last 12 months we have had to fight for the care our son needed. Again, our local health authority would not test our child for autism, citing budget cuts and staff redundancies. We were just about to go private when Nottingham stepped in and did the tests, which came out as confirmed ASD. Trouble is we are not naturally pushy people. The other parents we met at the support group had all gone through similar situations. It's a shame this has to be the case.

I understand that it would be uncomfortable seeing a former pupil at a support group. I'd feel exactly the same way. Hopefully you will be able to find another group close by. Tourettes action have lists of the groups availabe and hospitals can give you names of parents support groups too.

Good luck with everything. All the best!