My 7yr old son ?: This is my 1st question... - Tourettes Action

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My 7yr old son ?

funnybones profile image
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This is my 1st question regarding my 7yr old son Leo. I have joined on here because im trying to understand some of this behaviour ? He has been using a very repetative set of words over and over.... "Hi honey , ok honey, haho.... over and over. Ive noticed its before school.. going out, ect. perhaps stress related for a 7yr old! Im asking him to stop all the time and getting anoyed (often, and thats not a nice thing, if im honest) and am sure this cant be good... he is aware he is saying it over and over... said he does it because he wants to ?? im sure now its becoming hard to controll ! I Need advice please.... im sure this is a nice place to start.. thanks for reading x

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funnybones
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catherinem profile image
catherinem

This sounds a bit like a tic, contrary to what the media portray, those of us that have coprolalia don't always shout profanities, I have over the last couple of weeks asked my partner over and over if he is a porcupine. Try not to get annoyed, and try to deal with it as what it is a vocal tic. It's probably annoying him more than it is annoying him. Tics come and go and it could be a short lived one so please don't worry to much. By the way as well as my repetoire of profanities I shout gerbils.

funnybones profile image
funnybones in reply to catherinem

Thankyou for taking the time to write, im so glad ive found this forum as i feel like im not asking silly questions !! I have read some of your past posts, your honesty is lovely and i take you with a humour i feel you have...... I try not to get anoyed and now because of all this info feel i can be better educated, i have looked at him through a different mind set......... ill roll with it, laugh with him about it now, take away the Taboo, as ive heard it called now.. Thank you xx

scorpiodog profile image
scorpiodog

My coprolalia has many sides ranging from just odd totally non offensive to very offensive it can be a song.

Sometimes it can just be a repetition of one word or a whole sentence I just go with it now because it was very stressful trying to stop the repetition

I also have a stutter tic which makes me repeat the begging of sentences

My technique which actually works on the stutter tic is I change my accent deliberately and I find talking v posh works best for me

funnybones profile image
funnybones in reply to scorpiodog

Thankyou for replying to me, your advice has helped as i am on here to see if he can stop repeating by another action, ive tried singing a song, this however becomes repetative.. long after, so maybe not great !! Im now very glad to have found this forum as i feel helped and supported already, Thankyou, Lorraine x

EsJaySea profile image
EsJaySea

My son with TS (now nearly 15) had a lot of echolalia (repeating words or phrases - particularly things said on TV) and polylalia (saying the same word repeatedly) when he was younger. The polylalia would often come out in bursts of varying volume (mum, MUM, Mum). As Catherine says, avoid getting annoyed; he can't help it and if you get cross the tic might actually happen more because it's taboo.

You don't say how long he's had the tic or if he has any motor tics such as twitching. I think some kind of eye tic is quite a common starter - my sons first tic was rolling his eyes. It could be just a transient tic and be gone again in a few months. Keep a diary & try for a diagnosis if they persist.

funnybones profile image
funnybones in reply to EsJaySea

Thank you so much for your reply, i am so glad i found this forum. Even in the last 24hours, thanks to the wonderful people such as you, ive learnt so many answers to a few questions and concerns... its been amazing and i feel like im going to understand and help my son. You mentioned Taboo, this was one of my biggest questions, weather to ignore or bring it to his attention? He has aways been a live wire with boundless energy, Jumps like Tigger haha, a real sence of humour too... a personality i would never want to hold back ( considering im the opposite, quiet and lazy haha ) He doesnt have a physical tic, i have a 19yr old that would stretch his neck when younger (lasted about 2yrs) and now does a kinda humming noise when sitting quietly, i never investigated ! Thanks again, i will now keep a diary, you have helped me xx

EsJaySea profile image
EsJaySea in reply to funnybones

My son too was always fidgeting / moving; even from when I could feel him in the womb, if thats not too much information!

When the eye rolling started we got his eyes tested, then thought maybe it was hayfever. Then he started with a really mad laugh, at totally inappropriate times. For about a week we thought he was doing it deliberately & told him off. I think my lowest point in parenting skills came when I thought that telling him that his friends would think he was weird if he carried on doing it would stop him (he was 7!). Almost immediately after, there was a sort of panic in his eyes whenever he did the laugh & we realised that he really had no control over it. We spoke to his teacher (who was lovely) & a few days later she called us because he was getting upset about the tic. Thats when we went to the GP.

The taboo thing; sometimes it's a social convention, other times it's self-imposed. Eg, when he was 9 he started doing a double-handed middle finger (this was possibly the rudest thing he knew at the time) - it lasted as a tic for about 18months. By this time we'd learnt to ignore the tics, but sometimes you need to acknowledge them. With this one we could see that doing it was upsetting him, so we suggested that he put his hands in his pockets when he felt the urge, which seemed to be a solution.

Self-imposed taboos were any tic that really drew attention to him (big motor tics or loud vocal tics). The laugh I mentioned quickly mutated into a high-pitched squeak and this tic has been his nemesis over the years. He hates it. Consequently, it's the tic he's had the longest & that comes back most often.

I've mentioned it before in reply to other posts, but the thing we found very helpful was using positive language as this takes away the 'taboo' element. Eg, when he was 12 he had braces fitted to his teeth. Very early on, I could see that the feel of his teeth on the orthodontists latex glove was triggering a tic. She said 'don't bite me' a few times - each time the tic escalated a little bit. After the 3rd time she said it, I leaned in and said to him 'keep your mouth open' - it stopped the tic right then. Other examples include when he was on his bike he developed a tic that made him look directly into the sun - so we told him to look at the road. When he had the urge to put him hand on the lit gas hob I asked him to fetch me something that moved him away from the hob. Basically, avoid 'don't, mustn't, shouldn't' etc. It's quite hard to start with, but gets easier.

Finding out so early that you (and your son) are not alone will be realy helpful. It was quite an isolating experience for many years for us and a million times worse for our son. The figure of 1 in 100 for TS I think is really misleading. I believe that it's an estimate made by experts who knew waht they were looking for and almost certainly includes people like your 19yr-old. If that figure were true there should be another 11 children at my son's school with TS - as it is he's the only one.

How you actually handle the tics is what works best for you as a family. At groups I've met other children who can laugh at their tics - my son is not one of those! We can now talk to him about the TS, but it took a long time to get to that stage. Thats why I post anonymously - (although he knows I do it - I asked if I could, to share what we know with other parents/children. He was OK with that, but no names).

best wishes

tourettesparent profile image
tourettesparent

Hi,

My son, now 12, was diagnosed with Tourettes just over 18 months ago. He started repeating words and phrases over and over, on and off when he was about nine and a half years old. Like your son, it was nothing in particular, just random things that he seemed to like saying under his breath every now and again. I had no idea he had Tourettes and initially I found his unusual behaviour a little annoying, but tried to ignore it.

The vocal tics then were joined by motor tics and over the next year these increased, so eventually I couldn't ignore it any longer. At first I felt helpless and didn't know what to do to help him 'fix' what was going on. I asked him if he could stop, but too felt confused when he couldn't seem to help himself. If he stopped one unusual habit, another would crop up to replace it. I tried to chill out about what was happening but eventually had to admit there was something else going on. He wasn't depressed, or upset but when one habit (a contradicting one) got him into trouble for contradicting me and I thought he was being rude,he cried in frustration, I knew we were dealing with something that we needed advice on. My son is very polite and well mannered (and still is)and in my bones I felt heed wasn't doing any of this on purpose. The thing is, when little habits like this start, my parent's instinct was to try to help stop it or try to help to validate what is going on, simply because it is very difficult to KNOW what is going on.The best thing I ever did was to put myself in the position of my son and ask myself what it would be like to be him. He wished he wasn't ticcing and saying unusual things and this helped me understand how he was feeling and not get annoyed. This then doesn't elevate the tic to 'taboo' status, which can make the urge for your child to say it even stronger!

As said in one of the other comments, keep a diary of symptoms as this could be handy should Leo ever need to be referred to see a paediatrician. These habits or tics he is displaying might simply disappear. My own sister had a facial tic and the action was accompanied by a noise and after a while, the tic just faded away, never to appear again.

Don't feel guilty for feeling annoyed or frustrated. This reaction is perfectly normal but it is how you present this to your child that is important. I know my son watches my reactions to things and sometimes I want to hop around the room in frustration 'cos I want to know why he's saying the same ruddy word or phrase over and over again or WHY he and us have to live with dozens of different vocal and motor tics, habits and obsessive routines. But I'm also very aware that how I react to what is happening to him has an impact on how he sees himself. So therefore I try to mask my reactions. If inside my head I feel ?????????????!!!!!, the face I try to show him is a calm one. Not always realistically possible but I always try to go for acceptance and support.The best thing I think is to try to develop a sense of humour about what is going on (easier said than done) and not to panic. I bet nearly every single parent of a child that has suddenly developed persistent, worrying and annoying tics or habits has asked them to 'Stop it.' I know I did before I knew what was going on.

It really put things in perspective when my son's habit reversal therapist gave me an exercise to do as to how it felt to try to suppress a tic. He asked me not to blink. Point made. Couldn't do it. I wanted to blink even more when told I couldn't.

It might be a good idea to have a chat with Leo's teacher to see if he is doing his habits at school. This helps to start building up a picture of what is going on and might help later, should the habit or tic persist or escalate. If you can put together a chronological record of letters, reports and any diagnosis of symptoms and keep this record in a folder in one place (and take it to EVERY meeting or appointment you have) you have a full, detailed history of symptoms, teacher comments etc. Agencies and health authorities don't always contact each other so it can be invaluable to hand them details of a diagnosis if they don't have a copy of it.

Getting in touch with 'Tourettes Action' might be a very good idea. They have a helpline where you can chat with very supportive, knowledgable people. They can also give you practical advice about doctors, specialists and other organisations that can help. When my son's symptoms first emerged, my husband and I didn't know who to talk to or where to seek assistance. That was a very lonely few months. But there is help out there. Go and see your GP if you are worried and ask to be referred to see a community paediatrician. Get the specific name of the paeditrician in your area to give to your GP that you would like to see. Doing a bit of homework on the doctors, paediatricians and specialists in your area and surrounding areas can save a lot of time. Quality care for Tourettes within different health authorities varies, so it might be a good idea to be prepared to travel out of county. We did and receive excellent care for our son when we went to a neighbouring county.

All my waffle comes from the point of a parent, not a professional. I'm sorry about the length of my reply, but what other people can say in 100 words takes me 1000! I wish I had been as on the ball as you have been to contact a forum like this one when my son's symptoms first started. You are asking the right question. If you can try not to worry too much, it would be better for you. After all, your son's symptoms might disappear as quickly as they came. And if they don't, at least you can get informaton and make informed decisions.

I wish you the best of luck with everything. K xx

funnybones profile image
funnybones

Dear K, I cant thank you enough for taking the time to write such a lovely long reply to my question. Everything you have shared about your experiance as a parent and your son has echoed mine. Thanks for your understanding to my mild frustration to his behaviour.. as i write this he is watching football with his dad and im over hearing him ask a repetative question....and making silly noises.... (yes some are funny) He is a fantastic boy with a great sence of humour.... My small parent guilt (as any mum knows) is the handling it with frustration. The lovely way you wrote about how you act and talk with your son will help me... im sure ill read your reply to me again, next time without a little tear haha .... I am so glad i found this forum !!! and very glad you are on here, i hope it has helped you too... it has been the only place i have been able to ask a question that i felt may have been a little, um silly (im sure u understand that) I have an older son Alex and know now he too has a slight tic (if thats correct) he used to stretch his neck, now he makes a kinda deep throat humming noise, noticable while we are sitting quietly together......... he is 19yrs old..... im almost sure this is why im more aware of Leo`s um.... whatever it is ? Thanks also for reminding me Not to worry, thankyou,wishing you well, Lorraine xx

taffy222 profile image
taffy222

Hi Lorraine. It certainly sounds like it could be the start of tourette's syndrome. You have been offered plenty of advice in the above posts. My advice to you would be to keep a diary of his tics and not e any changes or new tics such as motor tics (physical movements.) If the tics continue for a year or so then you may consider asking your GP to refer you to a specialist for a diagnosis. You can show the diary that you have kept as 'evidence' to help in his diagnosis.

If he does have Tourette's then it is not the end of the world. I have TS and so does my 16yr old son. We both have a normal life. I went to university to become a teacher and my son is doing his A-levels. Just carry on with your lives and try not to worry about your son's tics. Make him see that you love him and are not worried about his tics. Best wishes for the future and don't forget to come back here if you need any more advice or reassurance.

TonyBoy profile image
TonyBoy

Hi Lorraine, Well some very interesting reading here to consider, I especially agree with

EsJaySea's outlook on things because it's like "ok this is no good I'll try that, that hasn't worked perhaps I should do this," it's a learning process because everyone is unique.

Yes, it sort of starts with the eyes, then mechanical tics with the body and then with the vocal stuff, most lose it by 19 years old, but others continue. Anyway, I look at things in a very simplistic way, The little chap is trying to understand what's going on and he can't help it, on the other hand you get annoyed by it but you can control what you do. I'm not saying ignore it, as he now knows that you are aware of it, and I'm not saying jump in there and sort it all out for him, as he will feel he has to succeed for you, and these things take time, he may feel like he has failed you.

I would take the attitude, at first, ok son do what you do then, it doesn't bother me any more, and sort of let him/her know you can hear it but are not too bothered by it and every now and then give him a big kiss and say "I love you" then walk off. This will leave him to deal with that initial realisation. If he manages to sort it then well and good, if not then he will want to understand it more and that's where you come in again. Give him a little time to come to terms with it and see what happens.

My words may seem a bit noplussed but I found a way to deal with thiings, only people I am relaxed with get to see my TS and then it dampens once I know they are not bothered by it. I was on the bus today and the guy behind me was chewing gum loudly, it pissed me off so much I wanted to rip it out of his mouth, so heaven knows how TS must annoy people that have to live with it in their house or family. The difference is your love.

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