Hi - my name is Jess - born 14.07.98 and I have a problem.

Being SELECTIVE MUTE, I go from this in a comfortable environment

to this at school

Away from school and in comfortable surroundings she is often a bubbling happy character. Obviously there are 'off-days', but that is part of normal life.

Already she is thinking about job options and how to make money - the latter she really likes although full appreciation of its value has not yet been established. News Reader, Vocalist, Vet, Ice Skater are just some ideas under consideration.

Before Christmas 2007 she made it patently obvious that her preferance was money instead of presents.

1 July 2008

Watch out - we might make it onto Television!

Having spoken to a representative from BBC 4 on Friday 10 October 2008, we are hoping that they will find our role as grandparents, coping with Jess's problem, suitable for inclusion in a programme currently at the planning and fact finding stage.

18 October 2008.

Where Are We Now?

SUMMARY OF PROGRESS - 7 June 2007.
We are now 31 days away from end of another education year and, after involvement of a whole variety of specialists, our granddaughter is no further forward in terms of speaking or even smiling. In fact she is possibly developing a desire not to communicate, as demonstrated when she talks at home about supply teachers who have not been made aware of her problem. As grandparents it is frustrating to see a lack of progress, and our impression is that initiatives from specialist support is merely paying lip service to the problem. We cannot see where a link is being forged between home and school environments to develop what has been achieved away from the classroom.

VIRTUALLY AT A STANDSTILL! - 18 September 2007.
Why do we have this feeling? It is because there is no regular two-way communication with school to indicate what progress, if any, is being made. There is no greeting for the child from those on duty when we take her into the playground every morning - nothing to indicate they are aware of her problem, and we have to make our own arrangements to find another pupil who will accompany her into the classroom.

One incident at the start of School Activity day last term highlighted the low level of staff awareness and concern. The first activity involved all girls in her year running half way around the school sports field. She started last and, when everyone else had finished, she was at least 200 yards behind. It was painful watching her struggle to cope and not one solitary teacher or assistant went to give any encouragement. For the rest of the afternoon we stayed with her. If I witness anything like that again I will not refrain from intervening, and my manner will not be polite.

Another situation that amazed me was seeing the end-of-term report that assessed her Reading Level as being 2 years below her age. We were told this was because she whispered and therefore read without any emphasis or expression. This appears to have been an assessment made to satisfy a procedure and was totally ludicrous. In fact reading is her favourite pastime and she demonstrates a level way in advance of her age.

Support from outside sources has moved on - Speech & Language and Art Therapy appear to have disappeared from the scene - they did not achieve anything. A South Staffs Health-care Senior Child Psychologist is currently involved and one of her team undertook a school visit assessment on the penultimate day of summer term. The same person then visited our granddaughter at home in August. We are now waiting to hear proposals for further action, albeit we understand that anything offered to the school is not obligatory.

Why do I remain cynical about the situation we are confronted with? The School and 'Specialists' appear to take a view that the problem has to be sorted by them in their own way. Obviously they will discuss proposals with parents, but never appear inclined to take on board the situations that Mom, Dad and Grandparents have experienced and dealt with successfully.I have made 5 DVD's available to the Psychology team that demonstrate the lighter, brighter side of our grand-daughter.

Mainstream school is not the answer and government's policy in this direction is flawed. School arrangements are driven by the norm and this has a tendency to nullify special requirements to the detriment of those needing assistance. Our grand-daughter was moved from a high volume class during the last academic year to one with a maximum of 15 pupils. This year she has gone back into a class of 33 - hardly the environment to accommodate special needs!

Finally, one major problem is knowing who takes ultimate responsibility for Special Needs, and is open to approach if we are not satisfied with progress.

MOVING ON - 13 October 2007.
The family have now taken the initiative to move our grand-daughter to another school, having lost patience with the current establishment. We no longer have confidence in their ability and desire to provide meaningful Special Needs support in our case, and feel it is important to try something new pending the possibility that external sources emerge with a creative plan to improve the situation. Our daughter has now got a further meeting with the Child Psychologist currently involved on 1 November 2007 - the hope being that things can be moved forward in a positive manner.

Immediately after the mid-term break, 29 October, our grand-daughter will move to her new school that has under 80 pupils, and she will be one of 20 in her class. It is a Church school in a rural setting, 5 miles from home, and our initial impression is that the environment will be far more comfortable. Contrary to initial fears, she is enthusiastic about the move and we hope this might help reduce her anxiety level appreciably.

One lesson emerging from our experience is that main-stream schools need to have greater awareness of Special Needs situations as they emerge, and seek support at the earliest possible opportunity - something that, in hindsight, did not happen with our grand-daughter.

MOVED ON - 31 OCTOBER 2007.
She has now moved to another school and already appears to be a happier individual, albeit the deep-seated problem is still there.

We met our MP Tony Wright in Westminster 24 October to discuss what assistance he may be able to offer and he will be writing to the Local Education Authority (LEA). Coupled with this, having read about Emma Noble's experience (ex wife of James Major, son of John Major who was a former prime minister), together with receipt of Staffs County Council's LEA Procedure for supporting Special Needs, I am more than ever convinced we now have to get a SPECIAL NEEDS STATEMENT. This is something that I have only recently become aware of, and is likely to be a 'lottery' situation because it appears they are like gold dust. The LEA undertakes the assessments and then has to find funding and thereby hangs the problem - concerns have been raised by some MPs (as reported on BBC News 25 Oct) recently that Councils will be reluctant to provide real support because of cost. Staffs County Council has frequently been reported as being a 'cash-strapped' Authority. The LEA Procedure is a typical 'read it if you dare - understand it if you can - seek assistance from the usual host of agencies - and ultimately probably give up through sheer exhaustion if progress is slow or virtually nil' process. While the focal point - a child in need - labours with his/her problem daily, parents are likely to be engaged in a 'war of attrition' to get help unless they have finances to do otherwise.

ONE WEEK AT A NEW SCHOOL (2 November 2007).
It is early days, but what a change. We are already seeing a girl who is far happier, albeit the fundamental problem is still there and not likely to go away quickly. She talks about those around her in school with enthusiasm, and we have a feeling that the head teacher and staff have awareness coupled with desire to give our grand-daughter the best possible support.

Our MP Tony Wright has written to the LEA asking if they will confirm that she is getting the fullest attention given the deep-seated problem that exists. Our grand-daughter and her parents met with the Senior Psychologist currently involved and two Doctors yesterday. Use of an anti-depressant (Sertraline) has been suggested, but this will be subject to parental agreement and is in abeyance pending further observations at the new school. Meanwhile it appears the situation may be moving forward positively at last, but we will be watching carefully and will not hesitate to press for a SPECIAL NEEDS STATEMENT if one is not offered and we feel circumstances warrant it.

ALMOST 6 MONTHS ON AT A NEW SCHOOL (8 April 2008).
Is the situation continuing to improve? There has been a noticeable deterioration in confidence and the 'drawn face' is more prominent during the last few weeks. In the vicinity of school her happiness level has reduced and she is not talking as we wait in the car before taking her to the classroom. The reason is simple but answers to the problem are more difficult. One child in particular has been making things difficult and her inability to positively react means that she is once again becoming anxious and agitated in school. We have to hope that teaching staff are alert and aware to what is happening and control the situation in class, cloakroom and playground while considering our next move.

Outside assistance from the support services continues to be painfully slow, and although we understand school are seeking further advice regarding a STATEMENT from the authorities that would provide some one-to-one education, there appears to be nothing in the pipeline to build up her confidence and generate an ability to talk openly other than a previous suggestion that medication should be tried. There are times when she has been encouraged to use 'vision response cards' at school, but personally I think too much emphasis in this respect will be counter-productive and make her think that she does not have to try and talk. In fact I believe greater awareness has given her an excuse not to make the effort, knowing that people generally know that she has a problem. Equally using a 'buddy' is probably more likely to fail than succeed because she will not respond sufficiently to retain the enthusiasm of a second person. Our experience has highlighted this point.

There appears to be a host of support agencies who could get involved providing her condition meets their criteria, but the whole situation begs the question " Why is there not ONE PERSON responsible for overseeing our grand-daughter's progress and instigating appropriate action as necessary. It would appear that those with the most clout who are prepared to shout loud and often will get proper assistance, otherwise the rest will be dragged through a mainstream education system that does not have the facilities and expertise to cope. I have got no faith that those in the higher echelons of education at county level fully appreciate the situation surrounding Special Needs, and are probably blinded by too much attention to 'League Tables' and other statistics.

In 18 months time our grand-daughter will transfer to High School and it is frightening to think that she will not be equipped and be easy fodder for bullying.

2 July 2008 and the predicament continues.
18 days from school year ending and there was another long-awaited meeting for parents with a Psychologist and Doctor from the Education Authority. A school report for educational progress has been issued and it is easy to see from the text how problems posed by not talking are influencing performance. The child in question will not respond, is not going to and her mannerism projects someone with deep anxiety bordering on a mental state of torture - she looks petrified. See the comparison here Selective Mutism - the individual.

Rather than improve since the early days of moving school, her condition has got worse, and it can be felt in the rigidity of her body immediatley we get there every day. When school breaks 18 July for a long summer recess, there will be one more year at Junior level before having to face the daunting prospect of High School, something that none of our family relish. It begs the question "What price proper support for someone in desperate need being dragged through the State System"?

23 August 2008 and progress is slow.
Within the last few days our daughter has finally been able to arrange a meeting with the CAMHS (Child Adolescent Mental Health Service) team and this will take place 18 September - a massive 16 days into a new school year. She only got the appointment after having to chase progress regarding a referral to CAMHS that should have been made by the Psychologist involved after 2 July meeting. So now it will almost certainly be a case of trying to go over the same detail with a new face that has been related to so many other support agency representatives. The progress (this word is used reservedly) is extremely slow and will leave us as parents/grandparents having to continue at school where we left off before the extended break. Witnessing the painful rigid, hunch-backed stance of a child in need of REAL HELP will start again. One is left wondering when something positive will emerge to break the deadlock - the answer is certainly not in the text books, and professionals are struggling to find a solution. Time has surely arrived when those in Senior LEA positions go and view the child at school for themselves and then they may start to appreciate just how deep-seated the problem is, because I am sure that their perception from behind a desk cannot reflect a full appreciation of the situation.

On 15 July our daughter also had a meeting with a gentleman from Autism Outreach who told her they could not assist because the child was not on the spectrum.

17 October 2008 - positive vibes.
This is the most positive meeting I have been involved in or heard reports from so far. Along with parents and myself, the doctor prescribing medication, plus representatives from Speech & Language and Educational Psychology, together with Headmaster and Teacher with special need requirements were present. Major problems have been recognised and attempts will be made to address them. Moving to Senior School Level in September 2009 is causing concern and concensus of opinion is that our grand-daughter just will not cope. Joint submission for an all important STATEMENT (clarify what this means at a later stage) will be prepared by both school and parents. Process takes 6 months and there is no guarantee for a successful conclusion. However, there are overwhelming factors to be highlighted that will make a negative judgment by Authorities difficult.

Posture is causing concern - humpback, head down and drawn face - only at school. Long term effects could be curvature of the spine and that cannot be allowed to develop. Parents finally agreed to medication recently, and whilst it was with great reluctance, hopefully there will be a positive reaction.

14 January 2009 - Back to normal.
Having been full of enthusiasm following October's meeting, we have since come back to earth with a bang. On Friday 9 January, our daughter asked for a progress report and was told that school have finally completed an application for a STATEMENT. This has taken almost 3 months to prepare, and now a possible 6 month assessment period means that it is likely to be mid-July before any decision is known. By then our grand-daughter will be in the final days at Primary School, and left facing the awesome move to Secondary Education complete with her problem. At 20.01.09 the appliaction has not yet been submitted because a medical statement is also required from the person prescribing an anti-depressant. Added to this, our daughter was given an appointment at Crown House, Cannock last autumn with the wrong person. On Thursday 15 January she was due to meet the right contact, but that has now been re-scheduled to 27 January because he is not available. Erosion of confidence and lack of proper support have been prime factors ever since our grand-daughter's condition was diagnosed.

21 April 2009 - Still waiting for support!

Application for a Statement has been considered and forwarded to the Children & Lifelong Learning Directorate. They have now organised more assessments, the first being undertaken at school today. We have submitted more written evidence in support of the application. 24 June will be decision day, meanwhile parents, grandparents and school are left to do the best we can with an unenviable task, and the child continues to langquish in an anxious mode. Elements of her posture at school are becoming more evident in other environments (drooping shoulders), and this is cause for concern. The pace that authorities move at makes me think they are all trained at a tortoise sanctuary.

What next?

I will continue to develop this story.