Helping those with Tourettes locally & removing common misconceptions perceived by some non-sufferers.
A bit of background.
For those of you who follow my Eclectic odds n sods blog, 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 & dandy but I don’t think they really understand.
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”. If one hides behind calling something another name because it seems more acceptable, how do we expect those non sufferers to ‘really’ understand Tourettes?
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 suggested medicating him for Tourettes and also medicating him for ADHD, the latter of which the Psychologist said he most definitely did not have.
Where are we now?
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.
In comparison to other people we have met, who have Tourettes, we have found a big difference comes from confidence levels. Those sufferers who do have that confidence level are able to ‘fend’ off questions better, generally deal with social interactions more fluidly as well as deal with the bullying/teasing to a degree should this occur.
My son can easily step in to “fend off” be it physically or verbally a bully towards another, however he struggles to deal with it when directed towards himself, he either crumbles or lets his frustrations get the better of him, either way these feelings provoke reactions that bullies love, don’t they? It is about stopping the breaking down of confidence before it becomes too much of an issue and finding managing strategies.
It is very hard as a parent to stand by and watch one’s child suffer, one feels helpless and this is never a good place for any parent to be in, so with this in mind I made efforts to try and get local support.
We have found some local support.
I started searching for some kind of support as the NHS support is “six weeks” away at least, which doesn’t help my son today or tomorrow.
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 Sunday just gone, my son was keen and we attended.
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. There was a warm welcome and initially about 8 people, plus a couple of children, this grew as time progressed. 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 other physical tics, vocal ones too. 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.
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.
I have included here a video of jess at The Royal Albert Mueseum, talking about her Tourettes, it’s a great speech:
Here is the artwork attached as flyer for the event:
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
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 realizing 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 have enclosed a link here to children who have contributed to TourettesHero in talking about how it effects them. Click here for further watching.
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 🙂
© Justine @ LivinginEastSheen.co.uk