Category Archives: ADHD

Family Tip of the Month in Samuel’s World- March and April

April’s Tip of the Month – Easter Cooking

easter egg

Well it’s that time of year when our children go on overload with the massive choice of Easter Eggs galore!!!!!

It is supposed to be a celebration and a funtime but so far in Samuel’s life Easter does bring certain problems along the way and it is usually sweets and chocolate that bring out his ADHD with a vengance!!

I must admit I do find this a difficult time and hate to keep saying no to sweets all through the year and so last year I went out to all our local food stores and Health Food Shops to see if there are really any sweets or chocolate that would not bounce Samuel off the wall so that he could enjoy Easter as much as all his friends.

sweets

Did I find anything?????

I must say the Health Food Shops came up trumps in my book and I was able to find a lot of sweet products that do not have colourings, additives or sweetners in their ingredients and I bought a selection of items and rushed back home with glee!!

The sneaky part!!!! – Sshhhhhhhhhhhhh…….

You have to be once in a while I am sorry to say but it was for a good cause – me for one so that I would not be climbing the walls after Sam and of course for Sam so that he would have fun and feel like everyone else.

laughing bunny

Having got all of my sweets and chocolates safely hidden away, I had managed to find in another local gift shop (Whittards Cooffee/Tea Shop) for those of you of live in England, a selection of decorative Easter Egg containers already with packets of juicy additive packed Jelly Beans, these were swiftly removed (eaten by husband) and replaced with my own (free of any nasties) sweets.

We then were able to have a Easter Egg Hunt around the house where I labelled each Egg with the child’s name, which saves on arguments and battles!!!

Cooking Time in the Kitchen

What a horror I hear you saying and yes I could not agree more!!!! This has been an area of disaster for Sam and myself with most of what we have been cooking ending up on the floor or half eaten before we have completed the cake!!

For those of you who live near to a Sainsburys or Tesco – (overseas I am sorry, but something similar would do the trick) flock down their now!!!

gingerbread men

On the shelf you will find in the quick baking section hopefully a box containing a Gingerbread House Making Kit. It contains simple instructions with ready made large pieces of gingerbread for you and your children to be able to build your own house. The icing paste comes in a ready made bag and is really like dough which you use to stick the pieces together. Also included are lots of various bags of different sweets which you can either take a chance with or replace with your lovely Health Food Shop ones!!

This was an enjoyable time for Samuel and he was absorbed for a whole hour sticking and fixing the house which does not fall down!! Samuel was able to concentrate for the first time without dashing around the room and carefully position each sweet on the various parts of the house feeling that he had actually built this house.

For the first time ever we were able to film this special event without that ending up on the floor and he could then watch himself making the house.

He gained a lot of confidence and self esteem with the baking and I will be doing this again.

Believe it or not I was away that week for respite with my mum and my husband Lester had taken over the role of mum and so this was a memorable moment for Lester as he did achieve some precious time with his son without it turning into a battlefield, plus they finished off the afternoon tasting the house and laughing over which bit to bite into next!!!

sunrise

March’s Tip of the Month

ticking clock face

My Pal The Time Timer!!!

Clocks, clocks, clocks – we tend to try and run our day by time whether it be for school, appointments, catch-up with a friend or just cooking the dinner.

bunny running late

If I was to ask myself what stressed me the most with my day it would be being late and constantly feeling like I am running for a bus or train all the time!!!

I must say that since Sam was diagnosed I have been more relaxed about where we should be at a certain time but it still becomes an issue.

LDA Online Website

You will find this website via my link page – do click and have a look, its a great site with lots of resources which is where I got most of our first games etc. The price we paid was around £20.

It was searching on their website that I came across a Time Timer, a clock which comes in various sizes from alarm clock size right up to a classroom size for all the children. The one I decided to get was the medium one which can be placed anywhere in the house easily. It stands in its own mount and has big bold numbers for easy reading.

You dont’ have to know your time!!

The beauty about this clock is that your child does not have to know their time – the clock counts down the seconds and minutes by decreasing a red colour – for example Sam was hopeless at leaving the lounge when watching the TV and I used to find myself like a spider with eight legs trying to prise him off the screen!!

It worked!!!!

Having opened the package the next morning and showed Sam exactly what the clock was for, before he sat down to watch his programme set his watching time to 30 minutes – if your child is a whizz at telling the time they can set the clock. Once set the clock will show 30 mins of red colour. As the time ticks away the red colour gradually diminishes. Once the red colour has completely gone Sam knew that 30 mins had finished and that it was time for bed.

To have one evening without a struggle and to have an evening full of smiles and cuddles is worth a million!!!

Ps – Don’t forget, the clock is useful for everyone in the family – we can’t be good time keepers all of the time can we??

lynette xx

Samuels World Tourettes and other related disorders Book Review

Lynette’s Book Review

This is one article I have been trying to do for ages and I can only apologise for the delay but finally here it is!!!! Do bear with me as I list each book I have, I will keep adding to this article.

talking book

I will always remember the feeling of anxiety when I was standing in a book shop in Horsham looking at the endless book shelves filled with various children’s disorder/special needs books wondering what on earth I should buy!!

Being a mum when told your child has a problem you go out of your way to research and find a solution or answer and I found myself buying book after book so that I could understand my son more.

Having purchased and read a lot of books on Tourettes when Samuel was first diagnosed I have now got a good collection – some of them are excellent and are easy to read, others are more for the professional health sector and are not explanatory!!

Hopefully this review will guide you so that you can decide more easily on which book to buy for yourself and your family plus you can save some pennies and not do as I did and spend most of my first weekly Carers Allowance on books, books and more books!!!

If you want to buy one of these please click on the link which will take you directly to Amazon where you can order easily.

If you have bought a related book that you think is good or not then please email me with your review and I will post your comments!!

Happy Reading!!!

lynette xx

Why do you do that??

A book about Tourette Syndrome for children and young people by Uttom Chowdhury and Mary Robertson, published by Jessica Kingsley – ISBN No 1-84310-395-8. £9.50 new.

Tourettes Book - Why do you do that? Amazon

What’s it like??

This is an easy all rounder for everyone in the family to read especially for siblings and grandparents. I bought this for my daughter Grace because it has lots of children’s own personal views about how they feel about having Tourettes and by reading other people’s stories she could possibly understand her brother more about why he does and says different things. There is also a chapter dedicated to siblings.

From a parent’s point of view the book is laid out simply explaining briefly what Tourettes is and covers all types of questions that a parent would have when faced with a diagnosis.

This book would also be suitable for a TS sufferer, as young as 10 could read it. The various chapters cover school worries, exams and bullying.

Is it just a lot of medical jargon???

No, definately not, which is why I can strongly recommend this book – the book has no frightening aspects to it at all, none of those long medical words you tend to find in certain books! A pleasant surprise was to find some poems Professor Mary Robertson had written which did make me laugh making me feel more relaxed about Tourettes and Sam.

A very child friendly book written by a lady who understands!!

Marks out of 10 – has to be a 10

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!!

images by 2Cool Animations -  free animations for your web site!!!

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!

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

Samuel's Story of Tourette Syndrome, ADHD and other disorders

balloons

Hello and welcome to Samuel’s World – the world of Tourette Syndrome, ADHD and other disorders. I hope this tale sounds familiar to other families and that you can have comfort in knowing you are not alone and that there can be light at the end of the tunnel however small it seems.

Like the balloons, a world that is never boring or dull and one that you never quite know which direction it will go – as the story teller says “Once upon a time” let me take you back to last year 2005 where my story starts……Samuel had just had his 6th birthday when he started complaining of headaches and saying constantly “I can’t see the blackboard”. As a parent you tend to wait to see if its an attention thing or is it just because another boy had got new glasses in his class but I knew deep down that there was more to Samuel and I had to find out what! The challenge began…….

Starting School

rulers and books

Ever since Samuel had been at nursery school I knew he was different in some way or another, call it mother’s intuition. When Samuel was at nursery at the age of two and a half he would only point and do cave man language “UGH UGH” and found nursery school a challenge especially with socializing with other children. Samuel would always play next to children but never with them, if he tried to play with others he would always get upset because he did not understand what they were playing or how they were playing.

Learning to Read and Write

alphabet

Samuel settled into mainstream school well at the age of four and a half considering his social problem, we got used to him always fidgeting, not concentrating, dashing around like a jet plane, the odd tantrum, this is just a normal boy we thought! The only delay he had at that time was still his speech and writing/reading. Samuel would say “painers for trainers” and “foke for smoke” and “nook for look”. You tend to as parents carry on regardless and keep going to the parents evenings feeling encouraged by the teacher who would say “he is settling in well and starting to play with the other children”

Tic Alert!!

Samuel was in Year 2 when we took him to the optician, he had also started blinking a lot which concerned me thinking this was giving him the headaches and maybe he did need glasses. The eye test showed perfect sight!!!!!!! Great I thought, its just a habit, it will stop, nothing to worry about……or was there. From February 2005 Samuel’s habits got worse – blinking, sniffing, snorting, clearing throat – I became well known in Samuel’s school mentioning at any opportunity my concerns but constantly feeling like a paranoid fussy mother, know the feeling!! There were many a times I would look up to the sky and shout “Please give me an answer”

Finally after constant phone calls and meetings Samuel was referred to a paediatrician in West Sussex and after a quick assessment I was told Samuel had a Social Communication Disorder upon the Autistic Spectrum – what did that mean!!!

Armed with that diagnosis I charged ahead again raising my concerns with school who started to put Samuel on his own Individual Learning Plan. With additional help from various special needs ladies in the school Samuel managed to get through Year 2 having a few one to one sessions and a fantastic session called “Jump Ahead” which Samuel loved.

And then just as you think you have started to understand your own child and the habits that Samuel was developing, it all changed again. Samuel started in Year 3 last September, thankfully with a teacher he had already had in the lower years, but I still had my concerns. As Samuel’s disorder developed so Samuel was getting more and more frustrated with the normal routine of school life. In March of this year Samuel caught an awful throat infection which seemed to last for weeks – as soon as that had gone away Samuel’s tics worsened.

New Diagnosis

In the last 6 months Samuel has now been diagnosed by a top UK Tourettes Specialist at St Georges Hospital, London. Samuel has Tourette Syndrome, ADHD, Aspergers Syndrome and Obsessional Behaviour Disorder. His tics are so severe that some of the more complex ones are starting to cause damage to various muscles in his body which brings with it the pain, tears and frustration for Samuel. The list of tics that Samuel has would fill up this page so you will forgive me if I do not list every one, he has over 31 at the mo and he gets a new tic virtually every day. Samuel is due to start a new medication soon which hopefully will help the Tourettes, he will also start having counselling soon which I hope will take away his worries. You have to stay positive and like this flower stay strong even though you might feel alone, you will eventually grow and blossom.

Each day is a different day for Samuel – some tics get quite aggressive while others fade away, but they never stay away. They always seem to be lurking, hiding, waiting to spring out again with a vengeance.

Any disorder that affects a child is hard to understand – not just for the child but for the family as well – mother, father, carer, sibling – Samuel has a sister called Grace who is a year older than Samuel, if I was to ask Grace what she thought of her brother her reply would probably be “He is annoying” but deep down she loves him as much as we do and tries to understand him but this is a challenge.

a chocolate heart

Please feel free to visit my Photograph Gallery that I have setup on Flickr, just click on the button below and then once there click on photstream. Having a hobby that relaxes you when you are faced with stressful times helps a lot to rejuvenate your energies for the next challenge ahead!! If you are interested in buying one of my prints then please contact me. If you feel you would like to give Samuel a donation, however small, which will help towards his sensory aids this will be much appreciated!! Please read the latest update regarding Samuel – 2011 Latest Update, I have tried to update every couple of years – a lot has happened!. I thank you personally for reading Samuel’s World and hope you have found it a useful website to learn from. xx

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