*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 KETCHUP -NEVER 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

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

Chessington World of Adventures Review for Special Needs Families

Our family fun day at Chessington, Surrey

chimpanzee

Fortunately for us Chessington is not too far to get to, based just outside Epsom in Surrey, the journey by car took 45 minutes.

Booking Process

It is advisable to book your tickets before you get there otherwise you face a very long queue! The main website is fantastic with colourful detailed advice showing you the various attractions/prices and times. We found it best to ring up and book, we could tell the advisor exactly what our circumstances were and they were very helpful.

When we went which was in the summer of 2006 we did arrive just before 10am and there was already a queue for the people who had not booked!!! You have seperate kiosks to go up to if you have pre-booked but be warned you still have to queue for about 20-30 mins!!! Next time we will arrive around 9.30am…..
Samuel was border line and so were our stress levels! Once you have got through the barrier beware of the photographers!!!!, if you have a child who panics when having their picture taken this would really ruin your day! The idea behind it is the hope that you will buy a photo of your beloved thus bringing in more profit for Chessington….Walk on by and ignore!!!!!

Reporting in!

Given directions to Guest Services you are fully welcomed as a family and given carers tags to wear, with the child who has special needs a different colour tag to put on. Samuel felt comfortable and calm. We were given all the information we needed to make our day a stress-free one!

Off we Go!!!

attraction

Your are given a map which details exactly where every ride/attraction is – the layout of the site is good with signposts in case you get lost. We found that all the rides were laid out in certain areas very well with all the loud frightening ones away from the more placid ones. Chessington is a good all rounder suitable for all needs – Samuel is not one for the fast rides and does not like speed – we had plenty of slower attractions to go on which were just as fun!!

Special Perks

The one thing that Sam cannot do is queue – its impossible as I am sure you would agree!! A lot of the rides did have a queue and the waiting time was about 30 mins – if you have a special needs child and are wearing the approriate tags then you can go to the exit of each ride and can by-pass the queue completely and can get straight on. We found there was no embarrassment which we were concerned about – the usual stares etc – but because the exit is always quite away from the entrance we were not seen by the crowds!!

Please note that you can only do this if the child with special needs wants to go on the ride, any other person in the group cannot just jump the queue unless they accompany the child.

The best ride for Sam

Tomb Blaster attraction

Has to be the one where you sit in a car a bit like a ghost train but there are no scary parts! You are given a lazer gun each and you slowly go around this cavern shooting at the red lights to see how many bugs you can get!! Even myself and my husband Lester enjoyed this one!!

Dining out or Picnic!!

There is a good choice of food but it is expensive!!! We did take our picnic as there are plenty of quiet places to sit – you can get completely away from the busy rides and visit the animals which is in another part of the place. There are also lots of climbing attractions and soft play bits that the children can go on and you do feel that you can sit and watch without constantly getting up checking that you can still see them!!!!

The Pros and Cons

pros and cons

Pros

  • Easy to find and located near to motorway junction turn off.
  • Friendly Guest Services Staff ensuring we were welcomed and reassured of any difficulties.
  • Good Choice of Rides/Attractions to suit all abilities and ages.
  • Plenty of places to have a picnic or to eat in within a quiet or busy environment depending on which you preferred.
  • Fantastic “no queueing policy” for special needs children wanting to go on the rides/attractions making life so much easier.

Cons

  • Long queues when entering if you have not booked and still about a 20 min queue for those who have booked!! Not suitable for children who just cannot queue at all for any length of time.
  • There were a lot of foriegn staff working around, most of which did not speak barely any English!!! Not very helpful when trying to ask a question/direction!!!

Recommendations

The management at Chessington should try and change the checking in proceedure to avoid queuing at the entrance for special needs children and their families/carers – even though you can book your tickets on line it does not eliminate queueing!!!

A simple electronic booth to one side would resolve this issue – by booking up before hand a code/voucher could be given a bit like a pin number which you could check in by thus saving time and staffing. The cinemas these days have these so why can they not be installed at these busy venues!!!

If they are going to employ a lot of foreign students on a part time seasonal basis they should contribute as part of their training an English Language Study Basics Course as part of their induction process – this would help the students in our country and our sanity when asking for directions/help!!!

Score out of 10 – would have to be an 8 – a good place for all the family!!!

www.copyright-free-pictures.org.uk

The Springboard Project, Horsham – an exciting place for special needs families

Samuel’s Adventure at Springboard!

What is Springboard in Horsham? – I hear you ask, well for Samuel it is a place filled with fun, excitement, laughter and most importantly an understanding and sense of belonging.

Our Sanctuary

For anyone living in Horsham or in the surrounding villages/towns in West Sussex Springboard is a large Victorian house located in the centre of Horsham which has a dedicated team of staff and volunteers of all ages providing a multitude of resources, services and clubs available to special needs children and their families/carers of all ages.

I heard about this place through a friend of mine whose daughter already goes there, but the ironic thing about this was that when Samuel and Grace were only babies I used to go along during the day and just sit in their Sensory Room because the lights and bubble tubes used to relax both of them – at that stage I of course did not know what was to develop with Samuel.

Samuel’s Day

For Samuel having to go into a building he has never gone into before or to meet new faces whatever the age is a very anxious moment and usually like all these fun filled places for children these days they are normally loud, hectic, busy environments.

I took Samuel just for a visit – or so I thought – on our first Saturday so that we could both explore the house and garden, we were met by a friendly face in reception who signed us in and immediately a young chap with a grin introduced himself to Samuel and explained he was going to be Sam’s buddy for the morning. During school term time once a month children can go along on pre planned visits on Saturdays from 10 am til 12.30 pm and can be left with their assigned buddy within a safe secure caring environment. During school holiday times they run a holiday club for various age groups.

Our Tour

Within a second of us going through the door Samuel was off dashing here and there with the buddy close behind – the beauty about this place is that Samuel is in no danger whatsoever and he can expore as much or as little as he wants with his own buddy. This also meant that I could sit quietly and fill out my membership forms!!

What’s there to do?

Well where do I start!!!!! There is a “Toy Library” for the children and parents/carers to use – Samuel on the first morning dressed up as a policeman, nurse, cowboy and played with prams, trolleys and much much more! He loved it…

Also in the house you have a large soft play room which has tunnels and mats that make music when you stand on them plus an enormous ball pool – this room is the best one for Samuel so that he can use up all his excess energy ducking and diving.

The quiet Sensory Room is one which I could stay in for hours!! The moment Samuel enters this amazing space he is like a mouse quietly moving around, touching and smelling all the wonderful smells and textures. It is a room full of lights, bubbles, a great hammock for chilling out on and another large ball pool for floating in.

The Garden

A garden every child would love to have – it is a large walled garden with stacks of outdoor play things – bikes, climbing bits, soft play, wendy house, swings and a great path area which is made up like a road traffic light system for the children to pretend driving around! Even I was a little envious….

Go and have a coffee!

By the time I had filled out all of my forms regarding Samuel and his needs he was so absorbed with his surroundings and content the helpers there said “Go and do some shopping in town, you have another hour yet.” I closed the door and walked through the park aiming for the town but suddenly felt quite lost – its a funny thing to explain how I felt – I did not know whether to laugh or cry – for the first time ever I felt a sense of relief that I had found a safe, loving, understanding place who could read Samuel like a book, they did not mind if he did his tics or made loud noises, they accepted Samuel for who he is.

Did I get into town I hear you ask? Yes – but the weird thing was I walked around and around and spent too long debating what I did need to get, so much so that the hour just went with a blink of the eye!

Going Home

Did he enjoy it I thought to myself – he did not need to speak, his face said it all – He loved every minute of it!!!!! He came out with a large bag of cakes he had made and did not stop talking about Springboard all the way home..

Samuel has since been back quite a few times now on Saturdays and he has even been along to the holiday club for his age group. Springboard is a lifeline for parents like myself – it also means that I can spend some precious time with my daughter doing girlie things which is often missed.

For Samuel “Springboard is the best place in the world,” “why can’t the world be like Springboard mummy, nobody stares or laughs, everyone there is normal just like me.”

“Priceless”