Experience with tourettes?

[SpecialNeedsCosimSpecial]

I have 2 dc with Tourettes. Sometimes its just nice to talk with others who have been there. In particular i am interested in how you or your dc manages/ed academically. DS2 struggles particularly with Maths, after a lot of research it seemS sufferers do have a learning difficulty associated with Maths and general non verbal reasoning?? all the Tourettes threads are very old, so look forward to starting new conversations.

[SpecialNeedsCosimSpecial]

Really hoping some posters come along.

[SpecialNeedsCosimSpecial]

Thanks Polter

[bowlofpastaandcheese]

My dd has tourettes. Co-morbid adhd and dyslexia.

Huge difficulties with maths. Hard to tell if purely because of TS or the other issues as well.

It feels that people understands the tics in TS (and most wrongly assume that all kids with TS have swearing tics which isn't true.) I feel there is little understanding though about other problems associated with TS.

She also has huge anger issues. Again, hard to know if due to frustration or ADHD or TS.

She is a cracking but complex child. Good to meet another Mum with a child with TS.

[ChampagneAndCrisps]

I have two with Tourettes as well. Both have the illness very differently. My DS is very good at Maths, my DD has become less good since the illness developed. She's been helped by going on Ritalin. DDs tics are really severe off medication. DS tics a fair amount too, but is also quite obsessional.

Agree people don't undrstand the complexity of the illness. Both of mine are adept at appearing normal in public. Which means most people have no idea how severely they are affected and there's very little empathy/ support from others.

My kids developed the illness when they were 12 years and 10 years. My eldest has an occasional tic, and my youngest has exhibited simple motor and vocal tics - but much much milder than his siblings.

May not post much more tonight - but lovely to make a connection.

[senvet]

Just giving you a 'good luck' bump to keep the thread up the page

[xenzani]

My dd2 who is 9 tomorrow has tourettes, albeit mildly. Vocal tics and sometimes motor tics too.

She is also being assessed for ASD.

[KOKOagainandagain]

DS1 has a diagnosis of TS in the mix. His tics come and go with stress. He has various motor and verbal tics at different times. The tics are like an emotional barometer for me which is very useful as, between meltdowns, he is very hard to read. I have always been advised to ignore them but other kids tend not to because he works very hard to pass as NT and they think he is doing things on purpose for a laugh.

He also has ASD as well as dyslexia and dyscalculia so despite average intelligence he struggles with academic work. He also has auditory processing disorder which I believe is associated with problems with arithmetic (rather than maths per se). Eg some people just can't learn times tables - DS1 has tried all methods going and has been able to learn some tables but he can't retain the information. At 14 he only knows 2s, 5s, 10s and 11s despite having bronze, silver and gold certificates earned at age 7/8 for 3s, 4s, 6s and 7s.

It drives me mad that DC are not allowed to use calculators (DS1 'attends' indi ss) because they are not allowed in exams so on some papers/questions DS1 is still level 3 (he was level 3 at age 7) but he is very good at symmetry and at identifying patterns and could achieve in line with his ability if only he was allowed to use a calculator. Instead, he is shuffled into entry level and experiences failure on a daily basis.

Rant over. Welcome by the way

[ChampagneAndCrisps]

We're in Scotland, so I know the education system is going to be different. My DD has been assessed by an Ed Psych - it had to be done privately as Psychiatrist didn't seem to think it worth it.

She now has use of a lap top in exams, and school lessons. She gets extra time in exams and is in a room by herself as the atmosphere of stress in an exam hall sets her off.

[ChampagneAndCrisps]

Happy Birthday to your 9 year old xenxani!

[mrsbaffled]

Hello

I have 2 DSs with TS. One is nearly 11 and one is 7. They are at the mild end of the TS spectrum (both have been worse tic-wise, but settled to quite mild recently - I notice it a lot, especially at home, but school doesn't really see it, even though they are definitely ticcing there - many tics are small, or hidden under trousers or shoes).

DS1 is AG&T in Maths, but has SpLD in Writing, Spelling and fine motor control (As well as ASD traits). Hyperactive at home. SPD.

DS2 appears to be top of the class in all areas. He has exceptional behaviour at school, but has ADHD like behaviour at home (hyperactive, impulsive, anger / rage).

[mrsbaffled]

Forgot to add that both excel at Non Verbal reasoning.

[ChampagneAndCrisps]

I think Tourettes just varies so much from person to person. My DS excels too and his Psychiatrist says it's essentially because of the Tourettes - his brain is quick at everything. My daughter is bright enough - excels at English - but she's much more concrete in her thinking and struggles with abstract concepts.

How do you find other people react to your child's diagnosis? I've not had an easy time since this all started. My mum in particular has had no understanding or sympathy. Quite the opposite.

I do cope because I've learned to look after myself as well - not looking for online sympathy - just wondering if it's a common experience to have to just get on with it.

[mrsbaffled]

I find most people are a bit weird about it. Non family don't really see it, so think I am barmy saying they have it...but they only have the severe coprolalia stereotype in their head.

DH's side are very good about it...I have educated them.

My parents are a mix. My DF has TS himself, so is fine! My DM has been very funny about the dx. She had a go at me for going to the doctor about it in the first place (as clearly "there is nothing wrong with them...."). Then told me not to tell anyone, as she is thinks there is a big stigma to it. I took my time to explain their symptoms and what TS is. She hasn't mentioned it since. I think explaining to her that I am ok with it, and actually knowing they didn't have anything more serious causing the tics was a huge relief, seemed to help.

[ChampagneAndCrisps]

Mine do have coprolalia and copropraxia, it doesn't happen much any more. But it used to really distress my DS, hearing himself swear.

Although it's always emphasised that only a small proportion of people with Tourettes swear, what I wish they would get across is that the sufferers don't want to swear and their brain is malfunctioning and taking over. My daughter was visibly surprised by the words that were coming out of her mouth early on.

Sometimes, now they're teenagers they do swear anyway - but you can tell the difference between that and a tic. Tourettes is so hard to parent!

My mother has never acknowledged the illness- she's told me she only has my word for it. The kids suppress around her, so she never sees them anything but 'normal'. My brother had it in a milder form - maybe he doesn't realise - but he's never acknowledged it either.

My MIL has been better and can speak about it quite naturally and ask how they're doing. Nice to have that.

I think people do think it's going to be like on TV, and my children do reach those levels, but never in public.

Their school has been very good and supportive, and seem to realise that they may look normal but do need breaks to tic in public.

Both are doing well academically. My DD has had a rough time this year with her meds changing and then her having side effects and having to change again. Seems more stable just now, although ticcing more again, I blame that on exams coming up.

[SpecialNeedsCosimSpecial]

Thank you for all the comments and the bump! had no idea anyone had posted! very interesting posts. DC look completely normal on the outside, its very hard getting teachers to understand that they struggle, ds2 has obsessional thoughts, and lots of tics plus adhd which makes concentrating VERY hard. we are working hard with him on his maths but he seems to make no improvement . He seems to understand it when its explained, asks sensible questions etc, but just cannot seem to apply what he's learnt. I was reading some material that said children with Tourettes have noticeable difficulty with maths, but its NOT termed as a learning difficulty which makes diagnosing it hard. It was referred to as an inability to reason logically but more research needs to be done around it.

DS1 has tourettes along and is average academically, ds2 suffered the most because of the co morbidities. i wondered wether anyone with older children could give any hope about academic outcomes in terms university in the future .

[SpecialNeedsCosimSpecial]

I didn't read all the comments before hastily posting and i now see that many posters have said something about maths abilities in their children etc, i am so relieved to find other people who have experience of this.

I have to rush out this afternoon, but will definitely be back! thanks all.

[ChampagneAndCrisps]

Just a quick post too. Are your DC on any medication? My two couldn't function without it

Both are on Risperidone, my DS is also on Prozac for obsessionality. My DD was started on Ritalin for ADD. You have to be careful as it can make tics worse, but since it reduced her impulsivity it actually improved some of her tics. Her maths and chemistry ability have improved with better concentration.

[mrsbaffled]

No Meds deemed ncessary here.

My DF has TS and got a good degree and worked as a programmer for 40 years (very good at maths and logic). He struggles socially and has quite severe OCD but muddled through.

I think DH had TS as a child (but not dx), but predominantly grew out of it by the time I met him (early 20s)...(he has a few small tics left now, but only I really notice them...I am very tuned into tics). He has a PhD in Maths and a brilliant job.

[SpecialNeedsCosimSpecial]

Ds1 didn't use meds and had no other comorbidites. He is now tic free and doing really well. Ds2 is on concerta for ADHD, however it now seems his tics have become worst although we don't know for sure wether it's the concerts that caused it. We decided to combine with Clonidine but dos has severe side effects from it we've had to withdraw it's all so up and down trialling mess, tics, new tics, OCD, probs at school, maths etc sometimes I just stare at other little boys with their mums talking and chatting happily and keep asking why? Why don't I have healthy little boys? Both both ds's are gorgeous and lovely it all just gets wearisome sometimes.

[SpecialNeedsCosimSpecial]

I'm so excited to hear about the boys with TS and good at maths! It means there is hope. PHD? Blimey I will dancing through the streets!

Ds2 has just started complaining about intrusive thoughts, has anyone experienced this? I'm so worried.

[SpecialNeedsCosimSpecial]

I'm also delighted to hear mrsbaffled that your DF had TS but your dh only had it mildly. I can't stop worrying about what this might mean for any offspring DS may have.

[mrsbaffled]

Well, I didn't develop it despite a parent with TS (though have OCD traits, which seems to be what women tend to develop with the TS genes, I read somewhere). I guess it was inevitable my DC would develop it with a DH with tics, so on both sides.

[SpecialNeedsCosimSpecial]

Neither of us have TS or Tics, nor either set of parents so we are completely amazed as to how both ds's have it. I had thought if you have one parent with TS any offspring would have severe TS but now I'm wondering.

[mrsbaffled]

I don't think it is that simple. As I said some children present with OCD rather than TS with the same type of genes.