What an amazing day learning about Tourettes!

Today was an amazing day, why?

A bit of background.

For those of you who read up on my posts will know that one of my sons suffers from what we called ‘tics’.  In the past we have called them ‘nervous tics’ when trying to let people know and they just shrug it off as an “oh well” which is fine.  We recently had him assessed privately, the Psychologist said “we won’t put him down as having Tourettes as this is often reacted to negatively & might cause him issues in the future, so we shall just say tics”.  I did wonder about this, I feel he should be diagnosed with what he has, not tailoring it to suit “social prejudices or ignorance”.

Tourettes can be physical, vocal and emotional

Tourettes can be physical, vocal and emotional

Being new to this however, I just went with the flow for now as she has in fact been great, not like the NHS Clinical Psychiatrist who after having met him for 10 minutes suggesting medicating him for Tourettes and also medicating him for ADHD of which the Psychologist said he most definitely did not have.

We are at what I would call experiencing a “bad stage” of my son’s Tourettes in as much as it is clear it is affecting him emotionally quite drastically.  This is not helped either by teasing/bullying, his dyspraxia and word finding issues, which all sort of snowball up one behind the other.

He has a friend who has Aspergers and Tourettes, however this friend is extremely confident and seems to find the “charm” or “words” to fend off bullying/teasing to a degree, whereas my son can easily step in to “fend off” a bully towards another, but never himself, he just crumbles and bullies just love this don’t they?

My son has showed signs of morbidity and depression at times.  He might be like this for a few days, crying at night, telling me he thinks he is cursed, how can he get rid of this thing as I watch the desperation on his face, it is crucifying for a parent.  Then the next day things might have calmed, but as a parent, you don’t forget those horrendous moments of pain not knowing how to help one’s child and knowing that it probably won’t be the last time.

We move on to this week, today especially

So with this in mind I started searching for some kind of support as the NHS support is what “six weeks” away at least, which doesn’t help my son today or tomorrow.

Tourettes is not a disease, you won't catch tics

Tourettes is not a disease, you won’t catch tics

I found in my searches Tourettes Action UK and within this site an array of understanding and caring supporters who helped me around the site, e-mailed me a list of specialists, told me about the forum they have where youngsters can log on and chat to others and last but not least a ‘meet up’ with other parents and children, run by volunteers.  The next local meet was to be today.  I talked with my eldest and he was keen.

On the day I will admit I had moments of doubt, thought about cancelling.  What was it going to do for us?  Would it make my son feel worse?  Would it make me feel worse? Would there actually be anyone else there?  What would these people be like?  How would I react, my family, my kids?  Would my youngest behave?  Would my back hold out after the drive?

I am a little ashamed I thought all these things.

We made the drive

We arrived at a church, the meeting was in a hall.  We had a warm welcome and there must have initially been about 8 people, plus a couple of children.  My youngest soon shot in to the ‘playroom’ next door and created merry hell with the others, fuelled by wotsits and fizzy drinks.  We persuaded my eldest to stay in the main room and meet the grown ups and or listen to the talk.  The first talk was to be on Tourettes & employment, the next with Education.

I have to say WOW now, because it was Jess who spoke about employment, no I digress, she spoke about Tourettes as a whole, how it effects her, how she has progressed through life with it and she was a total inspiration, mind blowingly.  She is also an amazing speaker, her words effortless in clarity and sense, thought provoking, insightful and helpful.  In just one afternoon I learned a whole lot more about my son through listening to her than I might have ever done otherwise, my understanding of certain experiences he undergoes so much clearer.

One thing is clear with Tourettes and that is to own it, rather than letting it own you, in that I mean, though it will still be there, empower yourself, own your Tourettes, make it work for you.  Part of this is being confident, sharing the knowledge of it with others, educating them, trying to rid any stigma and ignorance.  This is very hard to achieve when not confident, my son has a long way to go on this front, but I have complete confidence he will get there in the end.

Jess pointed out it is pointless waiting for the day your Tourettes might go, because it might well not go, to learn to live life now and tailor your life to work for you, to make sure you are empowered enough to get what you want out of life that people should make adjustments where necessary in order for one to accomplish what others take for granted.

Jess’s Tourettes is so intense that she is in a wheelchair.  Her legs ‘tic/twitch’ to the point she just cannot walk more than a few steps.  She also has as well various physical tics, vocal ones also.  Every few words a tic word will join in, yet with all of this, she has been strong willed enough to get all the ‘support’ necessary to live life to the fullest in the way that she wants to.

I might miss out unintentionally a few things that Jess does, but she has started the website and blog called Touretteshero, she is also a writer, works with young people and an artist.  You will see from her site that there is a whole host of activities and information for people with Tourettes, but on a platform of let Tourettes be used within your life where possible to enhance it, don’t let it become a negative.

I am including here a video of Jess @ The Royal Albert Museum, talking about Tourettes:

This ‘meet up’ happens around once a month and sometimes consists of different activities, the next one, which unfortunately I am gutted to say that we will miss due to unforseen circumstances is on Saturday 12th April 12-6 at none other than the Tate Gallery in London.

At this event 5-16 yr olds with Tourettes will be given the opportunity to work with visual artists & explore.  Also Dr Tara Murphy, Consultant Psychologist from the Tourette Syndrome clinic at Great Ormond Street Hospital, will be on hand to answer questions from12.30–14.30.

Here is the artwork attached as flyer for the event:

Tourettes flyer

Participating artists: Adam Walker, Chris Poolman, Hannah Tait, Harold Offeh, Jenny Moore, Judith Brocklehurst, Katie Schwab, Keir Williams, Matt Shaw, Phoebe Davies, Shaun Doyle.

To finish off!

My children had a great time at the ‘meet’.  My youngest met his match in many of the other youngsters and had a wild time.  My eldest though painfully shy and moody at the whole idea of having to be present did eventually warm up, listened to a little between darting in and out of the kids room.

Let's de-marginalise Tourettes

Let’s de-marginalise Tourettes

At the end we got to mingle and chat.  We met a University Student who came with a ‘dance teacher’ who has severe Tourettes which effects him quite intensely physically yet he has managed to continue a vocation that requires control of his body, how fantastic.  The young ladies name is Sheera Al-Hassani and is a filmaker/youtuber/poet who has managed to secure a grant and use some of her own grant to make a film about Tourettes in a non documentary basis, but more of an artform, she will be there next month, again another reason for me to be gutted, but it goes to show there are those out there passionate to make a difference.

I also met an inspiring man called Peter, who has Tourettes only diagnosed later in life, he is now a young man and went through his childhood not realising he had Tourettes, which can and does change over the years in many different ways.  He is teaming up with professionals to try and explore the whole process of the brain and what happens during a ‘tic’ experience, to try and work out possibilities of de-marginilisation through understanding.  He also does stand up comedy where he introduces humor around the subject of Tourettes, laughing with rather than at having this disorder.

I feel lifted in spirit after having been to this meeting, the difference I know small for my eldest but it is at least something, small for us could be very big for him.  I know next time around he won’t feel so shy and it has now given us an opportunity to find ways to empower him with Tourettes bit by bit, day by day and to learn a lot more about it as parents.

I am including here videos from one of the children who posted on the Tourettes Hero web site about his tics ~ if you wish to see other videos of children bravely sharing their life with Tourettes click here 

 

I thank you for reading.  Do any of you have Tourettes or know someone that does?  If you would like to chat here I would welcome comments 🙂

Come browse my journey with chronic pain!

Come browse my journey with chronic pain!

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Come browse one of my other blogs?

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Lets stay connected!

  10 comments for “What an amazing day learning about Tourettes!

  1. March 8, 2014 at 7:25 PM

    I feel happy to read, that you now have some support and help. It is difficult, when our kids receive a diagnose, as can reach many years from now. But it helps so much, when you have support from other in same situation.
    Irene

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    • March 9, 2014 at 3:19 PM

      Yes exactly my sons been watching the videos which I have now inserted, it’s good for them to feel less de-marginalized x

      Like

  2. March 8, 2014 at 7:46 PM

    I’m so glad that this was such a positive experience for you all, I know when I first read articles on autism, it was like a light bulb going off in my head-it helped explain a lot about what Oscar has to deal with and aided in my understanding immensely.

    P.S. How’s Teddy doing today?? xx

    Like

    • March 9, 2014 at 3:18 PM

      Thank you, I just found a couple of videos jess did who has Tourettes and some children who contributed to her web site so have included them. Teddy is still being randomly sick and his breathing sounds a little labored if he has to do anything strenuous, so I am contemplating him going back tomorrow, i am not sure if all the retching has made his throat swell up, thank you for asking 🙂

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  3. March 8, 2014 at 8:33 PM

    I read it completely and I’m glad that in the end,there was,as I hoped,a happy ending!
    I wish your son all the best. 🙂

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    • March 9, 2014 at 3:17 PM

      Thank you it’s something that we will all learn to live with and manage in an easier fashion x

      Like

  4. March 11, 2014 at 12:46 AM

    Wow! You found a goldmine. Jess is so inspiring! I was mesmerized by her wonderful talk. Phenomenal. I’m so happy you’ve found this group. It’s too bad you can’t go to the next meeting, but you’ll have plenty more to attend. It must feel so good not to feel alone and confused. I have to admit my son’s vocal tics are very very subtle, it’s just his physical tic that is bothersome for some. Even then it only effects his neck, head and shoulders. I really enjoyed the boy’s video as well. I hope your boy is feeling a little better as he sees some of these.
    Thank you for a great post Justine!

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    • March 11, 2014 at 12:46 AM

      Oh and I love your new design!

      Like

      • March 11, 2014 at 2:38 PM

        Thank you, oh my, I bought another template which I somehow broke and the whole page was upside down, i had spent about two hours looking through templates, i totally freaked and cancelled that purchase and bought my 2nd favorite which is now my complete favorite, still tweeking it, it has some gadgets which hopefully i won’t break, i am totally useless with this stuff, i even broke my iphone last night, spent two hours on the phone to orange and apple…yikes..I really shouldn’t be allowed near technology x

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    • March 11, 2014 at 2:35 PM

      Thank you 🙂 Yes she is truly amazing, I was totally drawn to her. My son was quite stressed at the meeting, he’s chronically shy and as such resistant to participate, but he sat there for a bit, listening, taking some in. He did say after he felt more at east to tic in public now. Then when we got home i found him watching her video and ones keenly esp of other kids. I really felt for the small boy I think in Aussie land who can’t keep still and lie in bed 😦 Oddly my sons tics have got worse since the meeting, ors hould I say more frequent, I think literally he feels it easier to ‘let it out’ however of course he would prefer not to have it. It is very vocal i could hear him down the street, i always know when he is coming home from school lol…yikes its sound though when in the house and it does give him headaches, a sore throat and sore neck poor boy. We are going to possibly try to see if we can get him to participate in drama, hes totally resistant, but it would do him so much good its just trying to persuade him. the next meeting will be great, you would love it based in an art gallery, the Tate of all places…tempted to delay my holiday by a day. hehe….huggles xx

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