Horsham Tourette Syndrome Group

Starting a Tourettes and other related disorders Group

Samuel poster.pdf

Getting Started!

kettle boiling

For those of you who are local to Horsham and surrounding villages in West Sussex I would like to set up a new Tourettes group in Horsham which I hope to run once a month preferably in the morning one day in the week.

a train saying welcome

Who’s Welcome?

The door is open to any parent/carer/family relative who has a child diagnosed with Tourettes, ADHD or any related disorder.

What will you get out of the group?

Everyone’s needs are different and individual, some of you might want to meet new friends, others might like to listen to other people’s stories, or you might just want to relax, have a cup of tea and de-stress for an hour!

As well as me doing a book review on the website there will be the opportunity at the coffee morning to have a look at all the books I have bought along the way and to see some of the fab resources I have managed to get that have helped Samuel relax and calm down. It’s also a great way for me to build a circle of friends also and to learn from others how they have dealt with a situation and to share ideas.

Most importantly!

To have a laugh and to feel refreshed – “Tomorrow is another day and it can only get better!”

rotating smiley

Please contact me if you would like to pop along – the more the merrier!!

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Family Tip of the month in Samuel's World – November and December

a face with hand to chin

In the past few years I have tried many ideas, hints, tips – anything that might soothe and calm a situation or moment. Each month there will be a “Tip of the Month”, an idea that has worked for our family which might work for yours. If you have any ideas or tips that have worked for you in certain situations please email them to me in the comment section and I will post them for all to see.

lighted candle

Christmas is a time for giving and receiving, hopefully this website will achieve both!

December’s Tip – Smiley Faces

boy smiling

We have found this idea extremely useful and it can be adapted to suit your child’s needs. I have tried out all the different reward sticker charts but after a while they become tattered and torn and quite often get ripped off the door in a state of despair from Sam! Therefore with this in mind we have adapted our rewards incentive system to suit both children so that they feel equal and are not having to compete against each other.

What to buy – your ingredients

You will need – a clear plastic jar, like a tea or coffee jar – I got ours from Wilkinsons in Horsham for 99p each and soaked off the label marked Tea and Coffee and made up a label which reads Samuel and stuck it on the front. Also you will need a packet of fridge magnets ( make sure you get at least 20 and they have to be all the same), we managed to find round yellow ones with smiles on them.

Now we did start slowly with this idea about 6 months ago and worked our way up – normal everyday tasks that Samuel had to do like brush his teeth, go to the toilet, get dressed always seems to be stressful and annoying often leading to rage and aggression.

washing hands brushing teeth

If Samuel did these tasks with our help and did not get angry or hit us he would be given a smiley magnet to put in his jar. At the end of the day we would count up his magnets and he would get 1p for every magnet – you could use other treats, sweets, marbles (anything small – but do think about the high sugar content if you choose sweets as it might make things worse!)

Progression

gilr floating up on a balloon

As I said before this jar idea can be adapted to suit you and your family – we have progressed a lot further on this now – Samuel will now get a smiley face if he does not hit us or his sister each day. At the end of the week on a Sunday we count up all his faces – if he gets all 7 he gets £1 and a small toy from Hawkins Bazaar in Horsham (great shop for small bargain toys), if he does not acheive 7 then he gets less money and no toy. Our jar idea is the best one so far for Samuel as he never comes away with nothing in a day or a week and always achieves something however small. At this moment in time this is as much as Samuel can manage – if we were to say at the end of the day you have not earned any reward this would be too much to bear and would lead to sheer anxiety and confusion.

Obsessions

One of Samuel’s obsessions is money and he does look forward to maybe getting a whole £1 or maybe even that extra small toy which he can choose out of the bag if he gets a full house! Has this happened I hear you ask!!! Since starting the week method in Oct he has achieved it 3 times which for Samuel is a large improvement.

Other siblings can join in too!

Yes Grace has a jar as well and she too has the same rules except obviously she does not have meltdowns or hits, but she can be 8 going on 15 some of the time and can say the wrong thing to Samuel which will set him off! As a family we are constantly trying to understand Samuel and for a 8 year old this is hard…

Happy Christmas!!

christmas baubles

Well I wish you all a very happy Christmas and a happy New Year – try not to get too stressed and take each day as it comes and above all chill – you deserve it!!!!

November’s Tip!

I was reading an article in www.specialfamilies.org/ about sibling arguments and when as a parent you constantly feel you are always saying “NO” all the time and how the parent has used a red, amber , green rule of thumb method deciding when to intervene and I suddenly remembered my Christmas Tree idea!

Red, Amber Green!

I used this idea of mine when Samuel had just been diagnosed and he was having to adjust to his disorders – many angry moments occured which sometimes left Samuel lost for words. To prevent him from hitting his sister, or us, we gave him 3 Christmas Trees. The next time Samuel was annoyed and angry over a simple disagreement with his sister he would come and show me a red tree which meant “I am very angry and upset”

Oranges and Lemons and ?

bananas

At this point Samuel would normally be so angry he could not control himself – to distract him from the problem I would shout out a name of a fruit and he would have to think of another fruit. This would continue as long as Samuel felt he needed to until he was ready to show me a amber tree which meant “I am getting calmer now”. To finally show a green tree meant “I am better now and I need a cuddle” I would then find that I could talk to Samuel easier and find out what was bothering him and that Samuel would be calmer and could listen.

Now let’s get making!

And this is when the artist in you comes out! – Draw a Christmas Tree Template – big enough for your child to be able to hold in their hand – you will need 3 pieces of coloured card (red, amber and green), using the template draw round and cut out so that you are left with 3 Christmas Trees – you should now have 1 of each of the representing colours. Laminate if you can as this will help them last longer and will evade grubby fingers!!

Give it a go!!

Good luck with this idea and I hope it works as well as it did for us – as an alternative try laminating diffferent objects – snowmen, reindeer (for the more adventurous and skilled artist!).

red traffic light amber traffic light green traffic light

images by www.freefoto.com
Clip art licensed from the Clip Art Gallery (www.discoveryschool.com)

Tourettes website launched by local mum in Horsham

Support site launched

lynette with laptop

A MOTHER whose son has Tourette Syndrome, attention deficit hyperactivity disorder (ADHD), Asperger Syndrome and obsessive behaviour disorder, is running a support website for other families at www.samuelsworld.co.uk.

Lynette Coates, 36, of St Leonards Road in Horsham, hopes the site will provide practical advice as well as moral support.
Lynette and husband Lester Coates, 45, have two children – Grace, eight, and Samuel, seven, who was diagnosed with the four disorders this year.

The website was set up by Lynette’s brother Clive Walker, a freelance web designer.
She told the County Times: “It’s really just a bit of a helpline for parents”.
“When you get the diagnosis for your child, you go through all sorts of emotions.”
Although they were given useful information leaflets, the couple felt it would have been helpful to have some one-to-one contact with people who knew just what they were experiencing.
“Tourette’s meant nothing to us, apart from Big Brother and good old Pete,” said Lynette.

“It’s a big impact on the whole family, because you have to adjust your lifestyle to suit everyone, not just Samuel.”
She added: “If we’ve gone through all of this, there must be hundreds of other people that have, and hundreds more that are going to.
“So if I can be any help, even just to have a cup of tea, just to have that link to somebody on the end of a phone.”

Lynette said the website, which Clive designed with a view to making it easy to update, will include reviews of a range of products and services aimed at families like theirs.
These could be anything from advice books to holiday destinations marketed for special needs families.
They also plan to list some of the items on which Samuel can focus his attention when he needs to calm down.

Lynette knew when Samuel was two-and-a-half years old that something wasn’t right.
He found nursery school a major challenge, and had difficulty socialising with other children.
Samuel seemed to do a little better in mainstream schooling, but he was always fidgeting and would throw the occasional tantrum.

In Year 2 he began to develop tics, repeatedly blinking, sniffing, snorting or clearing his throat.
Lynette says she voiced her concerns so often that she began to feel like a ‘paranoid fussy mother’, but Samuel was eventually diagnosed with ‘a social communication disorder upon the autistic spectrum’.
His tics began to get worse, some of them becoming so bad that they began to damage his muscles, causing a great deal of pain and upset.
Fortunately, medication can reduce the tics’ severity, although it cannot get rid of them completely.

Earlier this year a specialist at St George’s Hospital, London, told the family that Samuel has Tourette Syndrome, ADHD, Asperger Syndrome (a form of autism) and obsessional behaviour disorder.
Samuel has difficulty interacting with other children, and finds it hard to play games because he often cannot understand the rules.
Because of the ADHD, small problems and frustrations can push him into an uncontrollable fit of temper.
This can be a particular problem when Grace wants to play with him.
“But she bounces back,” said Lynette. “She loves him dearly.”
10 November 2006

Courtesy of West Sussex County Times

Articles coming soon to Samuel's World

coming soon

I hope you are finding Samuel’s World and its contents useful so far – please do contact me with any comments or ideas/suggestions that you think might be useful for the readers, it is still early days.

Due to a family crisis with getting our son moved to a special school this year I am finding keeping this website supplied with ongoing constant articles very time consuming – please accept my appologies – I hope to be able to dedicate more time to this support site once we have reached our goal!!

Don’t forget if you have a question but you can’t seem to find the answer, just email me to register to join our forum.

  • Understanding Tourettes – which book to buy for the whole family
  • What toys and gadgets help Samuel to relax and chill out – and where to buy them!
  • From a daddy’s own words – a personal account from daddy on how he felt regarding Sam’s diagnosis. – (This is proving difficult!!)
  • Statements – our story so far in this difficult battle. We are now at the Tribunal Stage with a possible court hearing late 07/early o8. We did achieve our Statement but alas it has not helped Sam move schools!!!!

lynette xx

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Aspergers Syndrome – what's that?

Samuel and Aspergers

train and platform

The first time we realised that Samuel had a different understanding to certain phrases we would say was probably last year when he asked me one day “Has Daddy driven to work” I replied “No, he is coming home on the train” At first Samuel just walked off and continued to watch the television but after about 5 minutes he came back up to me and looked very puzzled and perplexed and said “Daddy will fall off if he is on top of the train”

Meanings behind phrases and sayings.

Samuel when listening to conversation will quite often get “the wrong end of the stick” as I would put it, now I know what that means and many other sayings like “I am at the end of my tether” or “I,ve been running round like a yoyo”, but for Samuel if you said any of these sayings to him last year before his support in school he would visualise a stick and ask is there a right end? or he would picture a yoyo and think – does it run?

Educational Games

moving dice

There is a brilliant game available that I bought in March called “Pull Your Socks Up” you can find it on the internet but do email me and I will send you the link where I bought it from. It covers and teaches all the different sayings and phrases we all say on a everyday basis – very enjoyable and funny to play.

Other Definitions

Only a few months ago Samuel said “Which way are we going to go to school today?” – I replied “We will go this route today” and Samuel’s reply was “How can we walk down a plant root then?”

The IT word

Maybe I am just like other parents but I do feel I use this word too much and have learnt by my mistakes not to use it as much and to define what I mean by that word. “Where is it?”, “Put it on”. The word it means not a lot really in the Aspergers world, it does not link to anything specific and you then have a child who unintentionally ignores you!

Social Interaction

Samuel has a very low self esteem about himself and always gets annoyed in whatever he is trying to do or frustration sets in – making friends for any child is a challenge and one I used to hate as a child myself!!! Always wanting a best friend, wanting to participate but not having the courage or confidence in myself.

Expressions – Should I laugh or be serious?

feelings

Many a times have there been situations that Samuel has laughed when he should have not and often when asked to have a photo taken the expression you would get is definitely not a smile! Understanding the social norms is hard for children with Aspergers, understanding other people’s feelings and facial expressions is even harder!

Again like Tourettes and all the other disorders Samuel has this one is life long – but with support and guidance some of them might get better with maturity.

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Obsessive Behaviour Disorder – what is it?

Samuel’s OBD

Collections

assorted rubber bands

I can remember specifically one day when I realised that Samuel was different to other children and it was when we walked to school one day last year in 2005, Samuel took over 1 hour to reach school – not because he was dawdling or complaining – but because he had to collect all the red rubber bands the postman had dropped on his rounds along the way!! My patience level wained that day and for Grace as well as he repeated the whole exercise again on the way home at 3pm following another trail of rubber bands! Samuel collected so many we made a large ball out of them much to Samuels delight….

More Collections

pepples and stones

From rubber bands it was stones or pieces of glass that looked like jewels – I wish he could have stuck with the rubber bands! That became more of a problem as these so called jewels were smaller than rubber bands and so took longer to find! After a couple of weeks of this hoping it would soon pass I had to give in to driving the car so that we could pass all of these temptations along the route!

And more!……….

Acorns, conkers, leaves, can tabs – the part you pull back, milk bottle tops – what more can you find along 1 main road!

The Office Man!

It was last year when Samuel would constantly come home from school with yellow post it note pads in his pocket and blue tac. His poor teacher kept on going to her desk only to find it had walked off! After several weeks of still more blue tac the worst was yet to come…… “Mrs Coates – Samuel has put blue tac up his nose” Its normally a pea or a sultana – but blue tac? Thankfully it did surface – but it did not stop him from loving blue tac.

What toy would you like – a remote controlled dinosaur or a box of paperclips?

coloured paperclips

What would you choose? – I would like a go of the dinosaur but for Samuel it would have to be the paperclips. If you removed all of Samuel’s toys from his bedroom and kitted him out with every office supply/stationery from Staples or Office World it would make his day. Pens, pencils, sharpeners, rubbers, tippex tape, cellotape – has to be on the reel – and labels!!!…….

Who can I get to sign next?

We recently went to St Georges Hospital for his assessment and for the whole 5 hours that we were up there Samuel proceeded to obtain every member of staff’s name by asking them to sign one of his labels he had taken with him, of which he had 100. He could have taken a gameboy or a colouring book – just a pen and a box of labels. He was highly amusing and bravely marched up to any doctor that happened to pop out of their consultancy room.

The Annoying Obsessions for Samuel

These are upsetting for Samuel as he just has to do certain things just the right way in the right order – sometimes he has to touch an object 4 times then 8 times, a prod here or there on me or daddy but it has to be on the same spot and if it does not feel right he will have to repeat the action again and again. Thankfully Samuel has not prodded a person he does not know on the street yet or tapped a person’s bottom just like he has to tap mine!

10p, 20p – is that my £1?

keys and coins coins and cash tin

Coins, coins, coins – Samuel is like a metal detector – if there is money around he will sniff it out! Each year I have a large old sweet jar which I put all our copper and 5p’s into and at the end of each year we all go down to Sainsburys to their cash counter machine to see how much we have. It usually goes towards our Christmas Tree – its a way of showing Grace and Samuel how to save pennies and what you get at the end of it. It was only after I had moved the jar one day from behind the curtain that I realised that more was going out than what was going in! £3 worth of 5p’s was found in Samuel’s bedroom in columns all in a row..

Samuel’s bedtime routine

God forbid if I forget what to do next in what order as Samuel will pick me up there is no doubt! We all like to do things sometimes in a neat way – I know I do – In anything Samuel does during the day it is always the same way at the same time – watching television – Samuel has to watch a programme on the same seat with the cushions arranged in a set pattern next to him – having dinner at lunchtime – if I did not warn Samuel that we would be having a cooked dinner when he normally has a sandwich it would start a full meltdown of rage.

Visual Timetables do help

These have been a real asset!!!! Bought my one off Ebay – but they are easy to russle one together – a laminated card with velcro rows, an assortment of pictures ranging from “go to the toilet”, get dressed, brush your teeth” Each night I change the tasks for the following day so that when Samuel comes down in the morning he can look at it and know what he is doing. Explaining his actions in pictures is much better than just in words which sometimes mean nothing to Samuel.

I wonder what he might want to collect tomorrow??

fir cones keyrings

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Samuel's ADHD

What is ADHD for Samuel

kettle boiling

Have you ever watched a fly in your house as it enters through a open window or door – flying in different directions, trying to find the way it came in – or have you ever sat and listened to the sound a kettle makes on the stove as the water starts to heat and boil, gradually getting louder and louder resulting in a low whistle which gets higher and higher in pitch until you take it off the stove and make yourself a cup of tea! Well that’s part of Samuel’s world.

Dashing, darting, I can’t sit still

buzzy bee

Since starting school at 4 years old Samuel has been the fly, the kettle and most of the time the thunderstorm and lightening – Samuel can never just sit still, he has to be moving all the time, even when watching the television Samuel will at odd times suddenly just get up dash about and sit back down again. He talks as quick as he runs, interrupting conversations and finds it difficult to listen to other people’s opinions and views.

Tourettes and ADHD

It has been said that children who have Tourettes usually have ADHD as well – in Samuel’s case all of his disorders are genetic coming from both sides of our families. Thankfully it does not seem to have affected Grace, his sister and I have been told it can affect boys more than girls.

Board Games – What fun!

Samuel finds this extremely hard as although he loves games – to sit and wait for his turn would be a big challenge for him and to lose is usually a disaster waiting to happen!! Samuel’s attention span is low if he is having to socialize in a group, he does not listen to instructions/rules and often gets angry if the group he is playing with has run off because he has not understood the concept behind the game being played.

Anger, Frustration Tears and Meltdowns!

As a parent/carer you find yourself constantly stepping in to sort out an argument or situation, to comfort or advise and to reward and praise – that’s part of parenting. But the most difficult time of all for us as parents is to sometimes feel that you just cannot comfort enough or understand what that child is thinking or feeling. Samuel gets anxious very rapidly often leading to full scale meltdowns which result in an attack of his tics which virtually cause him to fit. These can last from 5 to 30 minutes and are scary for Samuel and for us. They can be triggered over any simple irrational circumstance – wanting sweets before dinner with the answer being “no” springs to mind – and is probably a classic! He does not realise these anger moments as we call them are happening until they start and that is worrying, he wants to stop but for those 5 or 30 minutes he is in another world, chucking any object in his path, hitting, kicking, biting, not thinking of the consequences behind what he is doing could be dangerous.

How to stop these – what to do?

We have tried many ways – but this method seems the best so far – to avoid getting hurt ourselves and to prevent Samuel from hurting himself as well, we try and hug him with him sitting between our legs – counting to 10 slowly with Samuel – getting him to focus on an object has also helped. Samuel has many aids in his room which help him to relax and calm down – we have so many I will write another article about them listing where to purchase these great helpers!!!!

The Vicious Circle

volcano

Tourettes and ADHD just do not get along as friends and often when Samuel gets angry all the tics decide to appear and say hello with force. Its like a sudden surge of energy that has been trapped or a volcano waiting to errupt. Once the energy is released and the volcano has shed its larva all is quiet and still and Samuel has gone to sleep.

What will be the Outcome!

With family and professional support Samuel’s ADHD could go away completely – we all have funny habits and sometimes strange quirky ways we do things – that’s what makes us all different and unique!

A poem about ADHD through the eyes of a child

JellyBean

Sam’s a little jelly bean, jumping everywhere
I love him and so I care!

Sam’s a little jelly bean, dashing everywhere
I love him and so I care!

Sam’s a little jelly bean, having all his funny moves
Looking like he is at a disco, doing funny grooves!

Tickling Sam

Sam’s a little jelly bean, running everywhere
Having fun tickling people and so I care!

By Grace, Sam’s Sister aged 8 years

Copyright Oct 2006

image by www.comicgenesis.com

Butlins – Bognor Regis Review for Special Needs Families

Butlins at Bognor Regis, West Sussex

We travelled in the car which only takes about 1 hour, easy to find with loads of parking when you get there.

Booking Process

The process for booking your holiday with this company is very easy and straight forward. The website is colourful and interesting with pictures of all the attractions including accommodation categories – depending on your budget this is useful as they have different price bands.

Different Types of Accommodation

The agent on the telephone was very helpful and explained herself thoroughly. Because of Samuel’s needs we booked a Silver Self Catering Apartment which meant we could eat when we wanted to or had the option to dine out in there many restaurants in the complex.

The accommodation was 3 bedrooms ( to save on the arguments between brother and sister) lounge, kitchen and shower room with toilet. For a small amount of £10 I booked a ground floor apartment.

Communication Problems – hitting a brick wall!

brick wall

The communication skills of certain staff members when we arrived were very poor. Our check-in time was not until 4pm and having asked if we could check in early, or was there a quiet area we could go in to for Samuel, due to one of his tic attacks and the noise of the music being loud we were offered no options/help. It was only after complaining that a kind lady in Guest Services managed to ring Housekeeping and was informed that our room was in fact ready anyway! Accommodation was fair to good with a few minor problems but these were addressed quickly.

What does the complex offer

lots of money

The complex itself has lots to do for the whole family as long as you are prepared to dip into your pocket a lot!! Having been assured that everything apart from the bungee trampoline was free we were in a state of despair when arriving to find that this was not the case. The fair ground rides, soft play, children’s activities organized by the Redcoats, fort playarea outside and Swim Splash area were all free – all other attractions like the cinema, bowling, crazy golf, go karts etc were extra.

fairground ride

If you don’t mind queueing then this is the place for you – every attraction has a queue – and we were not offered any alternative like some large outlets like Chessington who allow families with special needs to avoid the queue! Samuel cannot queue, as you can imagine and this caused many a frustrated angry scene. Not a good time to go in holiday season as it was manic.

Food Glorious Food!

Food services were excellent, there was a large choice of dining out including the the option of eating at the new Shoreline Hotel – a lovely child friendly restaurant with lots of good meal choices with plenty of vegetables for the kids!. Entertainment for all in the evening and day – but you have to queue!!!!!!!!!!!!! The Splash Pool area is great with lots of pool areas, slides, wave machine, rides – however there are only 40 cubicles for 1000 people capacity so bear that in mind – we had to wait for over 10 minutes all wet for a cubicle to get changed in – again not good for children!!! Due to the lack of cubicles they only let in so many people at the entrance so again – MORE QUEUEING!!!!!

pros and cons

The Pros and Cons

Pros

  • Short distance in car, easy to find
  • Easy website/telephone booking
  • Flexibility with budget/pricing accommodation to suit needs and near the seaside!
  • Good restaurants/food services with lots of meal choices

Cons

  • Lack of Support/Communication for Special Needs
  • No organizational skills regards queuing for all attractions
  • Most attractions had to be paid for and were not included as promised when booking
  • This is still a smoking zone complex with smoking allocated to certain areas – still a problem!
  • Not ideal for children who hate a lot of noise – loud music/microphones
  • Poor changing facilities for the swimming area
  • Lots of queuing!!!!!!!!

Recommendations

They have alot of soft play areas for small children up to the older years – Butlins could easily incorporate a quiet/sensory area/complex for special needs children and their families so that they can chill out at any time!

Score out of 10 – would have to be 4.*

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What is Tourette Syndrome ??

spider

In a nutshell Tourettes at first to Samuel was a word he did not understand, he thought it was a bug that had somehow got into his body and this bug was what was making him twitch and move!

In just over a year now Samuel is still trying to cope with these sudden movements that happen nearly every minute of every day and for Samuel it is a scary world and frustrating causing many tears.

Diagnosis and Tics

The difference butween a habit and a tic is that a habit normally gradually goes away and oftern occurs for a day, a week or longer, but will disappear. Samuel’s tourettes is a mass of movements called “tics”, not the creature kind thankfully!. Some tics fade away and rapidly increase with new ones starting on a daily basis, but they never go away for good.

What tic came first – the early signs

Blinking constantly was the first tic, followed by sniffing, coughing, clearing throat and snorting.

smily face frowning face with tongue out funny face lots of facial movements

Then came the more facial tics, the twitching of parts of his face. Just his face alone forms more than 10 tics which include eyebrow raising, grinning, pouting, tongue in or out and a lot of nose exploration!!

After 6 months of having all of these Samuel starting developing more complex movements – stretching his jaw down and jerking his neck back like a constant whiplash injury, this then progressed to his whole head tossing back. This specific tic has become the bane of our lives at the moment as it is the one that causes the most pain, stress and anxiety for Samuel and anyone looking after him.

Make a wish

fairy wand

If a fairy came and visited me tomorrow and said I could have one wish so that one tic could be taken away, out of the 35 or so tics that Samuel has now I would ask that the neck and head jerk be whisked away from Samuel’s life because it is the most upsetting one for Samuel to cope with.

As a parent you feel you are always telling your children to “stop doing that, that’s dirty, stop touching your nose, don’t eat it!” When I think back to all those times – now it is not an issue, I turn a blind eye, its not important really, there is no point in constantly moaning about these habits, Samuel cannot stop them, he can sometimes suppress them, but then more return with a vengenance!

Different noises

Along with all the movements Samuel has vocal tics which can be various animals – sheep and a seal spring to mind – he will also copy and repeat words/phrases that he hears – thankfully as yet we have not have rude words!!!

Which one is going to come next

That’s a good question – I have asked Samuel just that – does he know which tic is just about to happen. It is really like a sneeze – a feeling he has that something does not feel right, he cannot say which movement will happen, it just happens.

Night Night

moon

I used to think that once Samuel went to sleep the tics would stop but they still keep on going! It takes along time for Samuel to drop off to sleep, you know yourself when you are trying to relax hoping you will soon drift off……… and then suddenly out of the blue your arm moves or have you ever had the feeling just before you finally go to sleep your heart jumps a beat and you think you are falling off a step!! Well now I think I understand how Samuel feels – Samuels’ body will twitch and jerk, this can be upsetting for him. It usually wakes him up in the middle of the night as well – and then the process starts all over again – trying to get back to sleep!

What a brave boy

When I was a child I would cry at the slightest provocation, what a trial I must have been for my mum, Samuel’s Nana! For any family with any disorder it is always hard to adjust and to understand, specifically for the person who has the disorder, but although Samuel gets upsets and frightened and says “He wishes he did not have these tics” the next morning is a new day full of exciting opportunities waiting to happen and he is starting to ignore some of the tics and just carries on regardless.

Can medication help

medication

Because of the severity of his Tourettes at a young age they are interfering with his schooling/social time and are painful. I am not one for dosing myself on tablets even for a headache and apart from the odd Calpol sachet always avoid medication for the children. On this occasion however we have decided that if there is a medication that can at least manage some of the tics so that they are not as forceful and distressing, then for Samuel’s sake this would help immensly through his education years while he is learning how to adapt and accept his disorder. This is only one of 4 disorders that Samuel has.

Help in School

welcome board

Well this subject is an article in itself really – the statementing process is a long hard journey I have been told which I have just started so I will keep you posted on that challenge. A special school has been recommended because of the complex disorders he has, however if a specialised one to one person could be found a continuation in mainstream would be another possibility?

If anyone has a story on this please do let me know, keeping positive is definately the key!!

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