Category Archives: Tourette Syndrome

*The Last 3 years Samuels World Update – 2011 NEWS*

How time flies !!!!

And where do I start ????

After a harrowing year in 2006/7 we finally managed to get a Statement of Educational Needs for Samuel but alas it did not give us enough funding for extra help and support in a mainstream school all the time and Samuel’s Tourettes became much worse resulting in horrendous tic attacks, often very painful ones which meant Samuel had to come home from school many times.

We visited many LEA mainstream schools in the neighbourhood but due to Samuel being a very bright high functioning boy County did not agree that he would benefit from going to any of these schools and that he should stay at his present school because he was classed as an odity and did not fit into a category ??!!!!! You can imagine from a mother’s point of view that having someone say that statement about your own child was unforgiving and disappointing to say the least so……..

A year moved on with Samuel now out of school without tuition of any kind due to the severity of his tourettes – we had medical statements to confirm that Sam could not maintain mainstream school but all the paperwork gained seemed to be still in vain! We finally had to inlist the help of a SEN Solicitor plus a Barrister from London and started the Tribunal battle with County.

Last year in May 08 we finally won our case for Samuel to go to a specialised private school in Surrey – it has been a distressing stressful time resulting in thousands of pounds spent on solicitor costs which has crippled us financially – but we achieved happiness for our son for a very long time.

As a family we have tried to stay strong through the masses of telephone calls, letters and barrister meetings – the process of a Tribunal affected both my husband and myself mentally and I am still having counselling for flashback emotional moments caused by the constant waiting and anticipation incurred until the 11th hour when County backed down and conceded.

A year on and it is June 09. Sam has been at school a whole year now and gets funding for a weekly residential placement which is only an hour away from home. The education and learning that he is getting from this school means that he now uses a knife and fork when eating his dinners and he has learnt table manners. Sam now says sorry when he realises he is in the wrong and he is starting to learn about empathy and the emotions of others. He is still behind on his education by a few years but he is achieving day by day tasks that are building his confidence and self esteem and for once he is enjoying school and most importantly he is enjoying and liking himself!!

Grace (Sam’s sister) has also been diagnoised with possible Apergers Syndrome and we are awaiting the final results of that assessment. From a siblings point of view it has been a hard time for Grace but gradually as the years have gone by she like us has accepted Sam’s Tourettes which will only ever be a shadow of Sam, always there sometimes more days than others, like the sun and the rain.

2011 – Latest News!!!!!!

My goodness as I said at the beginning – HOW TIME FLIES!!!!!

A lot has happened leading up to 2011, Sam is nearly 12 and Grace will be 13 in March!! Grace was diagnoised with Apsergers Syndrome along with OCD and other Anxiety issues. She has been in mainstream secondary school now for over a year and although it has been difficult with making new friends and joining in with group activities she is taking each challenge as it comes. As Grace gets older so decisions that she has to make are becomming harder with Grace being unable to decide foe herself. Her confidence and self esteem can be affected very easily and constant praise is needed for Grace to succeed in her education and socially. Grace was also diagnoised as being Hypermobile which means she is too flexible for her bones and muscles to cope with and she has very poor muscle tone. Both Grace and Sam have Horse Riding Therapy which is held with RADA – (Riding for the Disabled). This is very expensive but essential for both of them. It gives them both confidence in their ability, a sensory aid (which for Sam helps him to calm down) and helps Grace with her muscle development.

Grace as yet does not have a Statement – she does require extra help with exams – not sure how that will pan out in the next couple of years! Fingers crossed!!!!

Sam is getting on well in his special school! It has been nearly 3 years in May that we won our fight with West Sussex County Council and got Sam into the right school for his needs. However it did leave a massive price to pay last July 2010 as sadly due to the enourmous financial bill we finally had to pay to solicitors, barristers etc we lost our home and it had to be sold. Christmas 2010 was a harrowing time for the family as we did not have a home initially until by luck we managed to find a place to rent still in West Sussex for 6 months. December 14th 2010 will be a day I will never forget when Lester and I had to declare ourselves bankrupt at court – the fees for Sam’s Tribunal finally took its toll and there was no way out. Having never been in a court let alone meeting a judge you can imagine how stressed we both were however I will always remember the judge’s words when his first question to me was “And how old is young Sam”?

We left court that day with the judge saying “you can leave here with your heads held high, you have done what you needed to do for your child”.

Looking back now a few months later, soon to be approaching Spring, I can honestly say “We would not have done anything different” your love for your children comes first!

Sam’s Tourettes as he approaches Puberty does have its ups and downs with often a repeat of tics that resurface from a year ago! The latest one which is painful is where Sam has to scratch the inside of his nose which always causes nosebleeds!

Sam has access to many more opportunities now at school which hopefully day by day will mean that Samuel can develop into a confident person and be able to try and hopefully achieve anything that challenges him – he will be accepted into society with a purpose in life and we wish him masses of hugs, kisses and love for all that he has had to cope with – this journey has made us all a stronger person individually!

WHAT NEXT – doing what I do best “Being a MUM”??

Maybe I should write a book ???? If there are any writers or publishers out there interested in Samuel’s World then please email me!!!!! I have taken up Photography which is my stress relieve – please take a look at my photos on Flickr, the link is on the main Samuels World page. There is also a donate button for anyone who would like to donate towards Sam’s sensory needs, every penny helps!!!

There are many families in the world who are going through similar family traumas, we all strive to succeed in nurturing our children through their precious early years of growing up whatever the circumstances.

My personal words to anyone facing a family trauma whatever that might be – take each day as it comes – never think to far into the future as that can always change – cherish every moment of your family’s lives and above all feel proud of yourself and your family.

lynette xx

Family Tip of the Month in Samuel’s World – August

How to Survive a Family Holiday Abroad – Don’t forget the Tomato Ketchup!!

boy and bottle of ketchup

Off we go!!!

Having always gone on holidays for only 1 week this was our first break away for 2 weeks instead of 1 – Italy has always been our favourite place to visit and so we started searching on the Internet about a year ago for a suitable place to stay at.

Disasters in the past!!!

Before we knew about Samuel’s problems we had been on holidays abroad we had always stayed in an apartment or shared complex with other families. This proved to be a disaster with constant tantrums from Samuel either at the poolside or at the various restaurants leaving us all stressed and wanting to come home – now looking back I can see why Samuel was having tantrums over the Tomato Ketchup not tasting the same as English Ketchup or that the texture of the bread was not like the one he has at home from Sainsburys!

Choosing the right place to suit your family!

Not wanting to face another nightmare we decided that we needed to stay in a villa or a house which we did not have to share with any other family. We needed to be away from any neighbours and would need to have our own pool so that the children could shout as loud as they wanted and it did not matter what got chucked in the water! The place needed to be quiet and private with gardens for the children to charge around in with them having their own bedroom each giving Grace the privacy she needed and letting Samuel have a bedroom that he knew was his own so that he could arrange all his toys himself in a certain way without anyone intruding into his space!

What did we find??

We booked through a holiday company called “Vintage Holidays” based in England. They specialise in large county villas and so we choose Italy to be the country we visited, staying just outside of a town called Lucca near to Pisa. The villa had 25 acres of gardens with various fruit trees, a swimming pool, 3 bedrooms and above of we had privacy and space – for me to run off and chill out in if I needed to!! The only downside to all of this was the cost, would it be worth it??

What could possibly go wrong???

Nothing we hoped but that never happens does it?? We booked out flights through British Airways as I have been told they are very easy going with special needs children and their families. I pre-warned them before we left that Sam might get upset getting onto the plane and that he might shout the odd rude word. We checked in on-line which was easy and quick meaning that we did not have to get to the airport 2 hours before hand and were able to choose our own plane seats from the comfort of our own home! Smashing!!! Lester then just had to get the holiday insurance sorted and the currency changed up. It all seemd so simple and calm, was it too good to be true??

What to pack??

The week before we were due to go I had talked to Sam about the flight and had gone through various problems with him that he thought he might have on the plane. Sam produced a long list of what ifs in his head ranging from ear popping, crashing, eating/drinking on the plane,times, duration etc etc. After repeating every problem over and over again day after day he was finally settled in his own mind the night before – we gave him his own suitcase and a picture list of what he needed to pack in it which he spent all evening packing and unpacking but at least he felt grown-up and slightly more confident. Always remember to check their suitcase thought as once he had gone to bed I then opened it to find 1 pair of boxer shorts and the whole collection of his Dr Who creatures!!!!

The big day!!

This was when our problems began – we arrived at the airport to find that all the baggage conveyer belts had stopped working and so therefore all passengers were having to manually load their own luggage which as you can imagine this was taking ages involving lots of queues!. Not a great prospect with an autistic child……

After we had left our luggage in a loading area the departure computers told us that our plane was delayed – great I thought, we can all trot off to the toilet and have a snack – 30 mins later we are still trying to find a sandwich that Sam would like, I ended up getting strawberries from the Business Class Lounge at £4.80 per bowl!!

Gate Closing!!!

With Samuel still chomping on his strawberries the departures computer had skipped from plane delayed to gate closing – we had minutes to run like a maniac – Lester sprinting along ahead with me in tow dragging Sam and Grace to gate no 23 which seemed a long way away! We just made it with a minute to spare….

The plane journey

This went very well which I was pleased about – Sam kept his belt on the whole journey in case the plane crashed and declined the sandwiches which were brought around by the steward and from that moment on lived and breathed Sprite drink which was the only liquid he would consume – were we in for a rough ride ahead with all those sweetners and fizz?? Thankfully not – I strongly recommend this drink as an alternative as a short term measure!!

Time to find our baggage – where is it???

Yes you have guessed it – all still at Gatwick Airport!!!! It was not loaded onto the plane and so we were without luggage for nearly 48 hours. What else could go wrong????? Surely not…..

We had booked a hir care from the airport and were told when we arrived that the pick-up point was now down the road and you needed to queue up for a bus – this was very hard for Sam as I had not talked about this part of the journey but he did accept the situation fairly well holding on to his Sprite bottle!!

Getting to our Villa!!

Remembering to drive on the right hand side of the road with directions on lap Lester and I headed off and went straight onto the wrong motorway – once on you can never seem to get off …..nearly 1 hour later…..we finally get onto the right road only to break down!!!! The gear box on the hire car failed and we started to roll back down the hill!!!! With Italian car drivers all beeping their horns I got Grace and Sam out of the car to stand on the grass verge wishing “Good Luck” to poor Lester stuck in the middle of the road.

An angel arrived!!

For nearly 30 mins I stood there trying to calm 2 children in the heat until a kind man came to Lester’s rescue and the car was pushed to the side of the road. The man spoke some English and had children of his own and was was an angel from heaven! He took us into a local supermarket and using his own money rang the breakdown people explainiing in Italian what had happened – having rushed for the plane Lester had not exchanged our money to Euros and so we were penniless!!!

Negotiation time.

It took Lester nearly 2 hours to finally persuede the recovery man to take us to our villa – our options were a hotel for the night or to take a train!!!!!!!!!!!! None of those looked appealing with Grace and Sam in tow now starving hungrey, thirsty and tired…..

We arrived at our villa at 1am in the morning instead of the predicted time of 4pm the day before with Lester having to go to a cashpoint machine in the middle of the night so that the recovery chap could be paid for the journey!!!

The villa’s occupant!!

Not being able to see our surroundings in the middle of a mountain forest we stumbled into our home for the next 2 weeks only to find a scorpian greeting us on the door mat – thank goodness I spotted that before Sam did otherwise I don’t think anyone would have got any sleep that night!!!!

Our holiday

Well with all what had happened leading up to getting their we did all have a good time – the villa was smashing and had everything I had wanted – a gorgeous pool and gardens – privacy and above all peace!!! We had a resident deer who came to eat apples off the tree every morning and Sam spent most of the time trying to catch the many lizards who roamed the grounds! I managed to read 3 books which is a rarity and we did all chill out most of the time. Sam did have the odd disagreement but nothing major. We even managed to take a drive out to visit the lovely city of Pisa – for anyone going up the tower, purchase a ticket as soon as you arrive as there are time slots in place to avoid queues! Avoid going to the many beaches if you can as these are all private and you have to pay to sit on them – not cheap at £18 for 2 sun loungers and an umbrella!

The ups and downs and what to take with you.

I thought I had packed most items that we might have needed over the 2 weeks – the villa had a DVD player and so we had packed various films for us all to watch – Sam spent most of the days either watching Dr Who or watching – yes – Dr Who!!!!!

We were able to play with blow up balls and inflatables in the pool without someone blowing their whistle which usually happens if you are in a shared complex! I even remembered a pump to blow everything up with – a must if you don’t want to exhaust yourself too much!!!

Most of Sam’s suitcase contained all the items he has switched on when he goes to sleep – except for his Lava Lamp which he would have taken but with airport security hot on liquids at the mo I thought best not!!

A must to buy for any journey are those squidgy cusions you can now get which have tiny balls in them – they come in various shapes and sizes and are great to lay your head if you want to go to sleep.

Don’t forget chargers for phones, Gameboys and Nintendos!!!! Oh and spare batteries………….

This was our first holiday that I worried about Sam and his food quota for those 2 weeks – as he has got worse over the past year with his obsessions so has his food choice – most things have to be eaten with tomato ketchup. We tried over 10 different types of bread before we managed to find one that he did taste and like, the same proceedure repeated for the ham, cheese and cakes!! I even managed to find English Cocco Pops for him for breakfast but it seemed to make a difference just because we had bought the food from Italy.

So what did I forget to pack which would have solved a lot of headaches and would have helped Sam eat his dinners???

TOMATO KETCHUPNEVER LEAVE WITHOUT IT!!!!!!!!!!!!!!!!!!

Happy Holidays!!!!!!!!!!!!

Family Tip of the Month in Samuel’s World – July

July’s Tip of the Month – Pocket Money and Top-ups?????

coins and cash tin

Money Money Money repeats Samuel with more and more excitement!!!! Pocket money is a very difficult situation to get to grips with and not an easy one to control!!!!

Because Samuel gets obsessed with various objects and items, getting pocket money and understanding why he has been given it is an even harder challenge for Samuel to realise….With this in mind though it is still an important hurdle to jump over helping Sam to gain more independance and raising his self esteem with small rewards.

Star Charts – do they work???

As a family we have tried all the Star Charts etc until we are blue in the face and exhausted, however they do work for some families, just not ours – recently we went on a ADHD course run locally to where we live and one of the parents there mentioned this idea which we have adapted to suit Sam.

Pocket Money Day – How much do I get Mum???

Each week we give Sam 50p on a Friday so that he can go down to the local shop and buy a fruit lolly. At home Sam does have a board which tells him whether it is his turn to watch the television or not – this has worked a treat by the way !!!!! Less arguments with his sister…..Each day there are certain things that Samuel will do that annoys us and that are unneccessary – one example is that he will always chuck his wash flannel at the ceiling in the bathroom just as you are finishing his wash!!! To try and break the cycle of events, for every day Samuel does not throw the flannels he will get an extra 5p – ( the amount of money you give your child can be changed to suit your own situation) – we have found that this inncentive has worked for Samuel and the first week he got an extra 20p!!!!

A Log Book!!!

To try and get Grace involved as well and for other siblings in your family we created a diary/log book so that each time Grace remembered to brush her hair morning and evening we would make a note and tally up the top-ups at the end of the week. Grace is always forgetting to brush her teeth and never puts her clothes away!!!!

One at a time!!!

Don’t get too excited and make up a long list of what your child needs to remember to do as your child will quickly go off the idea and get more stressed leading to an anxious family – this whole idea is suitable to eliminate one at a time a habit that has formed which you want to break. It is suitable for any age and can be changed and altered to suit your child’s needs.

Have we progressed???

Sam now values why he has achieved his pocket money and can see what treat he gets at the end – he has even started to put his socks and pants away in his box!!!!

Beware!!!

Like all these reward ideas you do need to keep on top and monitor – if you forget to keep it going then it is very easy for your child to forget what they are trying to achieve and to learn.

Family Reward Time??

This is important and can easily me missed!! We have decided as a family to have a day out each month if we have all behaved well – parents included!! It will give us all a boost and some precious sharing time as well.

Family Tip of the Month in Samuel’s World – May and June

June’s Tip of the Month – A Step Pad – what’s that!!!!!!!!!!

This item is another nugget of gold and is worth purchasing!!!!!

Its called a StepPad – stepPad – and can be purchased by a company called Inclusive Technology – click on the link on the links page!

What does it do??

No bigger than a mobile phone and easy to clip onto a belt or waist band and cheaper than a mobile phone as well at £20.00 this is a must!!

When Samuel has to follow a sequence of instructions or tasks he finds this very difficult and often loses his concentration very quickly leading to frustrations!! Post It Notes are good but he tends to loose these as well.

A StepPad is easy to use and is ideal for any age. It is designed so that anyone can record their voice starting from the beginning of a sequence or instruction to the end. Each day I record in steps what is happening the next day for Samuel to hear so that he knows what is occuring and where we might be going. There is a rewind and fast forward button which Samuel can press to play different instructions or messages. To record your own voice you just press and hold down the REC button and away you go!!!

The good thing about this device is that it finds the next step for the child and no instruction can be deleted unless you press the REC button a certain way.

Ideal for your shopping list!!

Yes all the family have used it – Sam often records his own voice on it and sends messages to me, I took the StepPad on holiday with me and listened to Sam talking away on it!! And intsead of all those shopping lists you can easily record your list on this!!

Recommended and worth every penny – 10 out of 10!!!!!!

May’s Tip of the Month – Gardening

Well I believe I might have solved one of my families main problems at the moment – STRESS!!!!.

Gardening Tools

Yes – really – and the answer is Gardening for the whole family.

About 2 weeks ago I rang a chap in charge of a local Allotment Area just down the road from our house. Usually for these precious sites there is a Waiting List but on this occasion I was asked to pop down the next day to have a look at a possible plot which was becoming available.

Taking along Nana with me as my husband was away having a relaxing respite few days down in Devon we went down early the next day.

Which plot to choose??

Well the chap showed me 3 plots – the first was a mini wood!!!!! The second was not bad but still had remains of a crop of Leeks on it and the earth was covered in weeds, but the third was the best and had no weeds and had been rotivated over already!! Of course I chose the weed-free rotivated plot which just needed to be dug over.

Allotment, Garden or Patio??

Now I am not expecting you all to go and get an Allotment – this is not practical for everyone and is time consuming. You don’t even have to have a garden to be able to grow fruit and vegetables these days, with the selections of pots, tubs and grow bags on offer in Garden Centres there are loads of options available and for those of you who are saying “I never have any luck with growing, everything always dies” there are sturdy items you can grow which will pop up in any environment. Check out my Links Page for a great Gardening Site for Children.

Gardening radish

Good things to grow for children are SunFlowers – they are very easy and you just need a pot, compost and away you go! Very sturdy and fun to watch as they can grow very high! Just need some good supportive canes. Carrots can be grown along in a deep tub and Potatoes can even be grown in old wheel tyres!!

carrot gardening

What to grow??

I am no expert at this and have never grown a single vegetable but our trip down to the local Garden Centre for the first time ever was a calm experience with Sam and Grace each having their own Gardening List of seeds to buy, gardening gloves and fork/spade.

We all decided what vegetables and fruit we liked to eat – now I thought this was going to be hard for Sam as he normally hates any type of vegetable but he did choose Peas, Strawberries and Grace chose Sprouts, Pumkins and Wild Flowers.

peas strawberries

They have a small area each to themselves away from the main plot where they can feel abit more responsible and can watch their seeds grow.

What will we get out of it??

Trying to find an interest for Samuel is very difficult as he does not have a lot of concentration to be able to sit or stand for very long. Also a lot of hobbies etc involve others/teams and he does not mix well in a group.

When I showed Sam and Grace the allotment for the first time they spent half an hour just running around putting their fingers into the earth and feeling the texture of it and the smell! Sam found worms and bugs and even found loads of different pieces of pottery which he lined up all in a row while continuing to excavate for more!

Gardening hand washing

For me and Lester the allotment will be a place where we can go to de-stress and gather our thoughts. Gardening is very theraputic, it gives you more patience in dealing with situations/problems and I must say that since I have been digging, hoeing, planting and watering I have been more relaxed within myself which helps when tackling the next battle/argument at home!

The only downside that I can find is that you will have mucky children and clothes! But hey what’s abit of muck these days…

For Sam Gardening is a lifeline of Hope, Confidence, Patience, Happiness and Achievement which he is gaining without a struggle. When Sam planted his Carrot Seeds for the first time his Self Esteem rose. He waters them when he visits which is giving him and Grace some responsibility.

Every day another seed has grown a little higher and like a child you can watch and enjoy the different stages of their lives and feel rewarded in your achievements as parents.

smiling sun

Samuel’s World Forum

Welcome to Samuel’s World Forum – a place for everyone to share advice, support and friendship within the world of the Autistic Spectrum – A big thank you to everyone so far for reading my articles on this website and for your coments so far. Any donations greatly appreciated for Sam!

h3. Questions

face with a question mark

Having received a lot of emails from readers who would like a forum of sorts its finally here, just click on the tab marked Forum and it will take you straight there.

I know I have lots of questions that I have still not managed to find an answer for regarding different topics related to Samuel’s disorders and some of you might know the answers!

Does anyone have a problem with bathtime, teeth brushing or other toilet antics!!

What about school issues, statementing or medication?

flashing light bulb

h3. Answers

For every answer or bit of advice that someone can give is giving hope to the one who is asking the question!

This brings a sense of relief and means you can start your day feeling more positive and reassured.

Some of my questions

  • We have just started the statementing process so that Samuel can go to a special needs school nearby because of his constant tic attacks brought on by anxiety due to the everyday changes in his mainstream school – Has anyone managed to achieve a statement since the new process of statementing started???
  • Medication – what a minefield!!! Do you give your child tablets or not, what are the long term side affects, which ones work for Tourettes and ADHD?? Samuel has tried Clonidine due to a very painful complex neck tic but that did not help – he has just started Apriprazole.
  • Rages and Meltdowns!!! – Any strategies are most welcome…..A frightening and upsetting time for Samuel and us.

Your input is much appreciated!

If you feel you can answer one of my questions or you think you might have a question yourself please register yourself and join the forum – the more the merrier!!!

To register and to be able to start posting messages and to join the gang please contact the administrator or me via the comments section on any page in this site and a password will be sent to you.

lynette xx

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

Family Tip of the Month in Samuel’s World – January and February

February’s Tip of the Month

Getting Off to Sleep!!

child sleeping

This is one of Samuel’s major problems – winding down!! After we have gone through his bedtime routine, said goodnight and closed the door, Samuel can still be up 2 hours later doing many vocal tics – whistling is the no 1 at the mo!!

Listening to the Ocean!!

This was the best item I have ever managed to find at a car boot sale near to where I live! It is a small gadget called a Sound Spa made by homedics that plays various relaxing sounds – summer night birdsong, the waves/ocean, tranquill waterfall, rainforest, rain and heartbeat. It has a volume control and a automatic timer switch which means it can be set to play for 15, 30 or 60 minutes, then it turns itself off.

I don’t expect you to go browsing around all your local car boot sales and so I have located the product on the link above which belongs to Homedics – the item is in the Sensory Section – priced around $19 which is approx £9.99.

Every night now Samuel will choose the sound he wants to hear and sets it himself to how long he wants to hear it.

The beauty about this product also is that it has often been thrown across the room when Sam has had one of his rages and it never dents or breaks!!! It take 4 AA batteries and lasts about a month if played most nights.

Sleep is a very important part of our lives – deprived of it for any duration makes us tired and rundown for the next day – for Samuel this leads to more tics and angry moments!

Finding a solution to this stressful time of the day is bliss!

tranquil water

I hope you all had a smashing Christmas and Happy New Year to you all!!

flashing christmas tree

Our Christmas was up and down really, the Christmas tree virtually came down on 2 occasions and we had to resort to putting dumb bells around it to secure it down!! Each day was anxious for Samuel due to all the excitement of the day. The most stressful moment for Samuel would be having to wait his turn in opening his presents!

We also had a sad event happen over Christmas – our 15 year old cat named Flossie died – Samuel and Grace wanted to say goodbye and they did in their own way.

January’s Tip – Worry Box!

worried face

It is a very stressful time when Samuel has to go back to school – having to settle back into the routine of the unknown each day, new teachers, tests etc is worrying. Also having to build new friends/groups does have its anxious moments!!

Samuel has some new tics which have developed recently – one of which is a whistle – this has already caused problems in school, when told to stop, this only makes the matter worse and Samuel comes home more anxious leading to severe tics in the evening.

Often Samuel finds talking about his worries is too difficult – he says his head gets lots of messages inside it and he feels his head is in a knot and it is going to explode.

Drawing or Writing

If Samuel has a worry he will sometimes draw a picture on a piece of paper and hand it to me – these pictures could be as many as 10 in a day depending how worried he was! Grace would also put her worries into the box and either wrote them or drew a picture as well.

We got a box and named it “Our Worry Box” and at the end of each day we would sit down all together and look at all of our worries and try to understand and help solve the worry. Sometimes a worry would be “ what clothes do I wear tomorrow” or “ what day do I go back to school”.

We found as a family that we all can have a worry or problem and I found myself putting in a worry or two into the box!!!! Samuel then was able to understand that he is not the only one who has problems/worries and liked to feel that he could possibly solve one of my worries or even his sister’s worries!

Special Moments

Don’t you just feel sometimes that the day rushes along and there is no time to sit as a family and talk to each other – having this worry box is our special time where we can all help one another and feel special!

image of water scene by www.freeimages.co.uk

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

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!