Tourettes not just a tic disorder

Hello 😊 My name is Kirsty I am a mum to a 15 yr old son with Tourettes . I find everyone I meet considers the condition to be about swearing or tics. They seem to have no idea about anything else. After many years of fighting for the correct acho the correct treatment the correct everything to please the powers that be. I am now tired and heartbroken. Just how do I get him through these last month's at school how so I get the services to acknowledge anything other than tics . Sorry to rant but thank you in advance for any replies. X

[Lalala]

Sorry - I don’t fully understand your post because of the autocorrect.Has your son seen a Psychiatrist?

Maybe you should be making it more obvious that he’s not managing school, rather than dragging him through it. My two are both on medication for severe Tourette’s- which helps - but they’ve both had weeks at a time off school when they’re really not well. Overall they are both doing well academically.

[Carolbale in reply to Lalala]

Hi my son is now 25 with Tourette's/OCD/ADHD

I agree with you about people automatically saying do they swear ? Or finding it funny when it's actually distressing to the person with Tics and their parents .parents .

My son is a person With Tics that did swearalot especially during teenage years !! As hormones were all over the place which added to his anguish and distress at blurting out / Tic the swear words . As distressing to him but funny to peers 😡

He learnt to go with the flow to be accepted but hard to take personally . And did effect his self -esteem . Now 25 he learnt to grow a thick skin to survive emotional pain when others don't understand his condition .

It makes me sad and mad 😡 When TV programme makers are only interested in sensationalising these Seearing Tics as it attracts viewers and TV rating of their programme made .

They should be concentrating on how people with Tourette's suffer with their Tics and how it controls their life ! Along with the associated disorders of OCD and ADHD .

Understanding the condition fully still has along way to go in The UK

[Lalala in reply to Carolbale]

I completely agree with you. My son swore a lot when his Tourette’s started - and it distressed him so much.

I’ve had a guitar teacher refuse to teach my son because of his Tourette’s ‘they swear, don’t they? I have to think of my other pupils’. It was all I could do not to swear at him!! More fool that teacher - my son is very musical because of T, and may go far.

I agree about TV and sensationalising Tourette’s. I find even Senior Drs and Nurses that I know socially don’t understand it because of its representation on TV.

It makes living with Tourette’s all the more lonely.

[Carolbale in reply to Lalala]

Yes it can be lonely and isolating when people are so ignorant !!

However we made our son go out to social things even when he didn't want to . Because he has to Karen to live in this world and ignore others and grow a tough skin . He had to learn to in his head put two fingers up to people that stare or ask stupid questions !!

Ignore them as he is the bigger person not them and their ignorance !

It wasn't rally hard not just in him but the whole family felt embarrassed for him in certain social situations . But they too and myself had to grow a thick skin and sat to ourself did them they they understand . They just need educating . And walk away .

I hope you can learn to do this and teach your son to too . As everyone we or Josh has ever met have said how social he is . How charming with intelligent conversation. He is a credit to us even with this horrible disability . But he doesn't let others get him down and will say don't put your crap on me ! I've got enough of my own ! Ha!

[Eadweard]

Sorry to hear that, the whole media/swearing thing is a real setback. The ticks are a side effect rather than the main issue, as far as I'm concerned. I have TS and am also a clinician in CAMHS and I find myself having to constantly educate people. I overheard someone in a supermarket saying that her daughter has Tourette's 'but not the swearing kind'. However, every time she was told off for swearing she'd apparently say 'Sorry Miss, it's my Tourette's!'

As an adult male I find the hardest part in public is when parents move their children away from me. My phonic tics are non verbal. While prejudice is difficult, I do also often get more space around me on public transport!

[Carolbale in reply to Eadweard]

People still need educating on Tourettes . Not sensationalising in TV programmes that mock them 😡 if they did that when making a documentary or short film about other conditions like Dyslexua ,Downs Syndrome, OCD they wouldn’t be allowed to produce it !!

[gavsmom in reply to Carolbale]

PBS (U.S.) had a good documentary on it.

[Carolbale in reply to gavsmom]

How do I find PBS channel in Uk to watch ?what was the name of the documentary ?

[Carolbale in reply to gavsmom]

Thanks for info

[angelamoore1969]

My son was on the supplement the decreased his tics significantly. He was diagnosed with Tourette's Syndrome, ADHD, obsessive compulsive disorder and anxiety disorder. I searched for years for answers and finally found the supplement made specifically for these disorders. A couple of months after I had him on it they quit making it do to selling the company after 20 years. Me and many other parents I've been trying it were devastated because it was working for a children. I'm excited to announce I've worked for naturopathic doctor to recreate the product with even better ingredients. The results have been amazing. I 100% believe that Tourette's and comorbid disorders associated with it can be helped with the right supplementation. I'm actually creating a website to let more parents know and people struggling with these disorders. Everyone that's tried our new product is reporting amazing results also. If you're interested email me at [e-mail]

[Carolbale in reply to angelamoore1969]

Hi is your website up m running ? What’s it called ?

[angelamoore1969 in reply to Carolbale]

Yes! It is tscalm.com

[Carolbale]

Hi senior school/high school is a extremely difficult and stress time for all teenagers but more so for someone with Tourettes !! I agree my experience was the same they don’t understand the complete syndrome ! They have no idea about the Co-morbid side of the condition and what problems that can bring . My done has full blown Tourettes as I it . He has Tourettes with associated ADD , OCD and dyslexia . Unfortunately when he got to Year ten (which I guess is where your son is now ) . I had to remove him from the mainstream school in favour of a specialist unit for teenager with medical conditions . Eg . Lukemia, broken leg , self harming . Etc. I did this will help from the schools Education Welfare Officer who helped me put his case forward to the council stating that his main stream school could not provide the learning environment , and specialist staff he needed to learn and progress .

Everything is a battle but never give up . If he is taught in smaller group eg no more than four he will thrive and get his G.C.S.E s he just needs the right learning environment and smaller group tuition or1:1 you just need to get others to help you fight his corner with evidence to back up what you are requesting Re change in the way he needs to be educated to thrive .

Don’t give up ! Ask you G.P to right a letter to support this and his consultant . Then get a EWO Education welfare involved . It took six months of evidence from the school of monitoring his slow progress as evidence for EWO to put forward to local Council Education panel .

But eventually I got the result I wanted and he needed 🙂

[gavsmom]

I know what you mean! My son dropped out for the same reason. I worry about his future, but at least without the pressure we have more peace.