My feed
Premium

Please
or
to access all these features

Here are some suggested organisations that offer expert advice on special needs.

SN children

Tic Tic Tic... mum why did I have to get tourettes?... tic tic tic

7 replies

KIMItheThreadSlayer · 24/08/2009 21:37

DS1 is tic tic tic and has been for the last two days can not put a sentence together at the moment I feel so sad and he has just said the above,

He has not been this bad since June,

OP posts:
Report
KIMItheThreadSlayer · 24/08/2009 22:05
Sad
OP posts:
Report
Barmymummy · 25/08/2009 07:42

Oh bless him

Have no experience or advice whatsoever but didn't want to read and run.

My son has some tics (ASD) but they are mostly noise ones and come and go throughout the day. Hopefully someone will be along with some better advice soon.

Report
mamadiva · 25/08/2009 08:03

I honestly don't know who it hurts more when a child asks their parents that answerless question

Do you mind me asking how his tics come through (noise, jerking, nodding etc)?

The reason I ask is because I don't have much experience with tourettes TBH but I did work with a little boy who had it for a few weeks, his tics usually came to show by throwing his hand in the air or shrugging one shoulder constantly for a few seconds.

I remember his parents telling me that said boy used to ask a lot of questions about his condtion and why other 'normal' people did'nt have to dance, as he put it, when they did'nt want to

Anyway they said they found books at the library about tourettes and how it affects everyone differently, he then invited his friends round to hear the story too.

After that if he went off in public and someone stared his friends would start to explain to the person regardless of their age what caused it and how it affects him daily bla bla bla, used to cause great embarrassment to the person and also stopped anyone around from staring again

I realise this has nothing to do with your question but I just thought I'd explain because I don't have much experience with it as I say but in this case a bit of reading really helped with all the questions and unwanted attention LOL.

Report
mamadiva · 25/08/2009 08:15

Tourettes website for kids
Some books on Amazon

Hope you find something useful

Report
mimsum · 25/08/2009 08:58

the important thing to remember about tics is that they wax and wane - often for no apparent reason, so just because they're bad at the moment doesn't mean he'll be like this forever

ds1 has tourette's and asperger's and will suddenly get a new tic out of the blue, do it loads, and then a few weeks later it's disappeared

when he was 4 he had an awful one for about 3 months - it was a sharp intake of breath every few seconds, really loud and it sounded like he had terrible asthma - he couldn't get through a sentence without stopping several times - however after a while it just went, and thankfully that one's never been replaced

ds seems to have a repertoire of regular tics that cycle round and some that are there all the time, although we can have periods where they're so low-level you can almost forget he's got them

sometimes ds gets very annoyed with his tics, especially if it's something like coughing which can hurt, but a lot of the time ds actually feels very positive about them - he realises he wouldn't be the same person without them

the other thing to remember is that it's only tourette's if both multiple vocal and motor tics have been present for at least a year without a break of more than 3 weeks - lots of kids have transient tic disorders which come on for a while and then just disappear and never come back. Ds1's been ticcing since he was 2 and he's now 12 so I think we're in it for the duration!

I hope your ds feels better soon

Report
KIMItheThreadSlayer · 25/08/2009 09:56

Thank you everyone.
DS1 has both motion and vocal tics at the moment the really bad one is a sort of exhale that kinds of sounds a bit like a horse (this comes and goes) and a lot so screwing up his face.

We have different tics at times and yes some come and go, some stay a bit longer.
He has been like this for 6 almost 7 years, he also has AS but for the most part he deals with it, (he is 13) and although people are unkind at times he just says he is prepared for a whole lot of ugly from a long line of stupid .

Thank you for the links, I am always looking for new stuff to try and understand more about it all.

Hope for a better day today, he is planning to go see some friends, and at the moment is making war hammer models and having to concentrate hard on that the tics seem to give a bit.

OP posts:
Report
KIMItheThreadSlayer · 26/08/2009 18:36

Not wishing to tempt fate but it does seem to be getting a bit better.

OP posts:
Report
Please create an account

To comment on this thread you need to create a Mumsnet account.