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.