untangling this thing we call life…

Monthly Archives: June 2013

“Here we go again” springs to mind!  Last Saturday a heavy envelope thudded ominously through the letter box: Sweet Girl’s long awaited, and somewhat dreaded statement of Special Educational Needs.

Long awaited, because Darling Man and I have known for at least two years that she needs a substantial amount of extra help at school, and the only way to access that kind of help is through the bureaucratic system that is the Special Needs System.

Dreaded, because the help she can access will depend entirely on the wording of this ten to fifteen page legal document.  It’s a strange thing, the writing of which is shrouded in mystery.  A statement writer is responsible for reading through the mountain of accumulated “evidence” – from the school, parents, health professionals, education psychologists, the child and anything else that has been collated.  She or he then proceeds to turn all that evidence into a document which describes the child’s special needs, then the provision needed to allow that child to manage (dare we say thrive or succeed??) at school.  The final document, once signed by both the local authority and the parents is then a legally binding document.  It is not something to trifle with, and it is far more important than many first time parents realise to make sure there are no mistakes, and that every need is accounted for and can be provided for.

I have no idea what qualifications are required to be a statement writer – one of many little mysteries.  Certainly that person is not a lawyer as far as I am aware.

I sometimes wonder about the necessity for a basic grasp of the english language… I have seen the most marvellous and surreal sentences in the four proposed statements that have thudded to my doorstep.

There are also no requirements to have any medical knowledge as far as I am aware – another little mystery.  The result of this one was a particularly glorious example of irony in Little Man’s first proposed statement, in which there was repeated mention of his “gastronomy”.

[ Now, just to clarify:
Gastronomy: The art or science of good eating.
Gastrostomy: Surgical construction of a permanent opening from the external surface of the abdominal wall into the stomach, usually for insertion of a feeding tube
And for further clarification, the need of a feeding tube is usually because the person concerned is unable to eat… be it good eating or bad eating!!!]

Oh the joy, the relief, the sheer flutter of excitement I feel just now in sharing that little titbit of information.  I laughed it away at the time in a slight daze of shock, and without fully realising the importance of this legal document.  But actually, the reaction of the local authority was to excuse the mistake by simply stating that the statement writer had no medical knowledge.  I would have settled for him or her having the ability to read – and copy accurately!

There is one very salient point to be made about all this before thinking any further… The statement writer is employed by the local authority and clearly is made very aware of the resources available to that authority. So an exercise which in theory is all about one child, his or her special educational needs and the provision necessary to educate that child to its potential (criteria that each school aspires to, and many claim to achieve, and that each adult and parent expects of the state school system) becomes about the spreading of limited resources amongst many such children.

I do not expect resources to be unlimited, let me be plain. In fact, I have yet to meet any parent of a special needs child who has ever asked for more than the bare minimum for their child. And in fact, most of us are so desperate that our child’s educational potential becomes secondary. We are often just asking for our children to be safe in school – physically and or emotionally. Learning has become a sideline of school life by the time we receive that bundle of a “proposed statement”.

What I do expect is that the person employed to write the statement based on professional evidence should do so based solely on the evidence given. So that the proposed statement should be an accurate depiction of the need and the provision required to meet that need. That then should go to the Holder of the Purse Strings, to see how the provision can be … well, provided!

We live on the decisions made by people who are no longer answerable for them. In my part of the world, I and my family are deeply fortunate that there is considerable provision for children with special needs, and that the state bears responsibility for education each and every child to their ability and in accordance with their needs. And yet, in my little part of the world, some politicians or bureaucrats made the decision a number of years ago, to abolish “special schools”. These schools were thought to segregate “different” children and be “bad”. And so in the bright light of “inclusion”, special schools were closed, and mainstream schools were ordered to take in children with a vast range of difficulties.

There is much good to be said for inclusion, and I’m certain that in many cases, the special schools of old did promote segregation. But they also allowed children to progress at their rate, and they allowed very special teachers to learn more about how to teach “special” children.

[I’m not a fan of the word “special”, but it is one I choose to embrace rather than rail against. Much like “disabled”, and many other labels, I feel that those affected can choose to be offended and upset, or embrace them as part of a new language. I choose to do the latter, largely because I simply do not have the energy to waste on being upset by a word.]

The trouble with inclusion is complicated, and given that Darling Man is about to present me with dinner, I will stay on its surface. For inclusion to work, two things must be in place::
Either all children must be made to fit into a “norm”, and teachers expected to “differentiate” the work within the spectrum of that norm, or…
Schools and teachers must learn a vast amount of different teaching styles, become familiar with a staggering amount of different conditions that affect children’s learning; be adaptable in every imaginable way, to allow all children to learn (to begin with, the fact that children in this country can NOT be held back a year or moved forward a year flies in the face of the flexibility that true inclusion requires).

Inclusion is far, far more complex than anyone realises, but it is a pleasant smokescreen to make the general public feel that we as a society are truly accepting of differences and disabilities. To some extent it can work… though the cost, the real cost of inclusion is that children at the margins of the “norm” truly feel marginalised and often do no more than struggle through their school lives. The strongest of them will then find their paths in adult life. Many will live a life of struggle without ever getting close to their potential.

And then there are those children who are incapable of squashing their square forms into the round holes offered by mainstream school. Many of them are aware of their differences, which only adds to the agony of day to day life.

Eldest, Sweet Girl and Little Man, each in their own and different ways are three such children.

Eldest survived two years of normal school… I say survived with a sense of accuracy, because his second year was so emotionally painful for him that he used to beg me, on a daily basis, to kill him. He was six years old.

Sweet Girl has been in mainstream school for the whole of primary school. But in the last three years she has needed psychological help which took her out of school up to three times a week, and her attendance in this last year was 49% as of February. All due to sever anxiety, which is a symptom of her Asperger’s Syndrome. Hers is the proposed statement which has prompted this post.

Little Man has had a statement of special needs since he began school. It has provided largely the support he needed, and his is the closest we have to a success story regarding inclusion. But despite being a very sociable little boy, his differences mean that he has no friends. His medical and physical needs together with learning difficulty mean that mainstream staff simply do not have the capability to meet his needs within the setting of a “normal” school day.

Eldest has been in a specialised residential school for the last few years – and is thriving. Progress is slow, but overall steady, and he has a real chance at independence and to be a valuable member of society when he grows up.

Little Man will be moving to a special school that specialises in helping children with complex medical and physical needs and learning difficulty in September. This after a year-long, emotionally draining and intellectually taxing battle. With a slower pace of life, more suitable learning styles and incorporated physical therapies, he is likely to make progress both physically and academically.

Sweet Girl is currently in limbo. Her proposed statement lists a significant amount of need but currently suggests that she would be able to cope in a mainstream secondary school with a minimum amount of teaching assistant time. All those of us who know her, have worked with her and have seen her progress this year [crapahooting through the year is a fair description] know that this is not only far from what she needs, but that such a placement would be very detrimental to her mental health.

The cost of educating these children is far from negligible. And yet I ask myself, and I have asked the authorities on many occasions:
A child is in education for approximately 12 or 13 years. That child will go on to live approximately 65 more years. And this is the equation that MUST be resolved. The cost of (a maximum) of 13 years against the cost of 65 years.
For many children in need of specialised education, that help over the course of a few years will allow them to become independent, self sufficient, productive, and valuable adults – and let’s be frank, I’m talking economically valuable because this boils down to money.

So my question really is, let’s weigh up the cost of special schooling against the cost of an adult lifetime on benefits, in social care of some kind or another.

And honestly, my question truly is,
Let’s weigh up the cost of a few years of special schooling against the cost of an adult lifetime of regrets, of sadness, of little if any self worth. Let’s weigh the cost of those few years of special schooling against the cost of those who will end their own lives rather than continue living in a way that is simply too painful.

Post Scriptum…

I forgot!!!  I clearly found myself in something of a rant, published then re-read my title!!!  Sticks and Strings do play a large part in my panoply of coping strategies for stress and anxiety.  Be it knitting or crochet, having something to make, to do with my hands is a remarkably soothing balm to the tangles being twisted in my mind.  This week I have embarked on something new – Cross Stitch.  And since I really don’t like clutter and have far too much of it, I am planning a cross stitch square to send to a lovely charity, Love Quilts.  These fabulous people make cross stitch squares with sick children in mind.  Another team of volunteers sew the squares into beautiful, custom designed quilts which they send to those children.  Go look at their page, maybe give it a go!!!  I’ll post a picture when I’m done!



It’s taken this long… Back in November, two medical teams had called up concerns over Little Man’s health, feeling strongly that there was a gastro problem that needed investigating.  The tube weaning team had called their efforts to a close due to “dangerous” weight loss, and the endocrinologist had stopped the growth hormone treatment for the same reason.  I’m not being dramatic, I’m quoting what doctors said to me.  Of course, the word “dangerous” may be spoken, but it is rarely written in a report.  And so when I relay what I have been told to others who look after Little Man, things break down rapidly if those others stop trusting me.  (That is for another time, another season… trust has been in very short supply for the last few months.)

So… in November, the endocrinologist referred Little Man back to the gastro-enterologist whom we had not seen for three years… why?  Goodness only knows: with so many specialist doctors involved in his life, we regularly fall through gaps, and I do not always chase everything up.  On the whole, if things are stable, I let them be.  Unfortunately, when he has not been seen for a while, the system requires a re-boot in the form of a referral letter.  As usual, the letter was lost, and it was up to me to make several phone calls in the following months to ensure that the referral went through and an appointment was finally made.

It’s unfortunate that in the meantime so much in Little Man’s day to day life began to depend on medical reports.  Anything that I as his mother report is now deemed irrelevant unless backed up by a medical report.  The frustration this engenders has me stymied when I try to express it… I’m hoping that inspiration will hit me and I suspect that I will pick up my little pencil and create some sort of drawing, but for now, the page remains blank.

Anyhow!!!  We are now at the beginning of June and have finally seen a very busy gastro-enterologist.  It was a slightly frustrating appointment, an hour later than scheduled (and Little Man has reached an age where his patience for medical appointments is at an all-time low), with a doctor who clearly was rushed off her feet.  To have her look at charts and suggest that my son is overweight is infuriating, and I hope to clarify at the very least the choice of words.  Most people who see him describe him as skinny, and his BMI is normal.  However, his head is rather large, and I do know that his weight is significantly closer to the “norm” for his age than his height.  But please, look at a child before using language like that.  Ho hum… following a discussion with a nurse, I suspect we will have a phone conversation to clarify that little chestnut!!

There was a very good point to this meeting.  I’d have loved more time to discuss my thoughts and concerns – I’ve done a lot of reading and thinking and would like to talk with an expert about the possible issues, but actually what we need is information.  And the first thing that needs to be done is to go look at what’s going on inside that little body.  I was very impressed that once the doctor decided that we needed to do a gastroscopy and a colonoscopy, we were sent immediately to the appropriate ward to meet a nurse and discuss admission.  Not only that, but we already have a date!!!  Mid July, we will be heading up to London for those tests, including biopsies which will hopefully give us some answers and some idea of the direction needed to help him.

The nurse was quite quite lovely!  As we went through the normal pre-procedure questions, she mentioned more than once that Little Man was quite complex and that she would have to talk to a few doctors to ensure his safety.  This may mean more tests before the oscopies, but for me it pointed out once more that my description of Little Man and his needs is not exaggerated!  She plans to speak to the cardiologist and expects an echo and ECG before the procedure.  She needs to speak to the haematologist to discuss his bleeding issues.  She was keen to hear my thoughts about what I hoped would happen, which gave me an opportunity to voice some of the questions I’d been unable to raise in my appointment with the doctor.  Sifting through Little Man’s notes is going to take her quite some time, but I came away feeling very reassured that his needs were being taken very seriously.

It was a long day, with a little boy who is becoming ever more fed up of hospital visits.  But there were lovely highlights:

We bumped into Dominic and his mum… visit them over on www.justbringthechocolate.com, they are an inspirational family and one we met through the amazing charity www.postpals.co.uk.  The boys had such a giggle, comparing wheelchairs and playing on a tablet.  It was a joy to listen to them just get down and chat and play, despite only ever having met once before.  It was also really lovely to meet up with a mum whose writing is a source of huge inspiration to me, and whom I follow largely through her blog and facebook.

Thanks to our chat with Dominic, we were a little late to the ward… Serendipity strikes again:  as we arrived, Dr Mattie was waiting for the lift with us!  Dr Mattie is a clown doctor, the first (surprisingly) we have met at Great Ormond Street, and he absolutely lifted Little Man’s mood!  The red nose was wonderful, as were the flashing shoes.  Little Man was left with stickers galore and a red nose of his own… but the best gift was the smile!!  The Theodora Children’s Trust has to be one of the most uplifting organisations I’ve heard of, and this link to their facebook page shows a photo of the Dr Mattie Little Man met today!!!  How exciting, exhilarating, wonderful at the end of a day of boredom, overheating and heading into a discussion of needles to come.

Little Man is rather pleased that he will earn a pound coin for having a cannula, even if he is asleep when it’s inserted – oh the silver linings we have to find to help our Littles…  Similarly, he thoroughly enjoyed his chips (thank you McDonalds) on the train ride home!  The tears that well up at the mere mention of needles mean that we will do the blood tests at our local hospital, with the help of giggle gas.  Luckily, the nurses locally have really reacted well at the realisation that Little Man is now in the throes of a real needle phobia, and that giggle gas is currently the key to helping him.  A great friend of mine is due to give a talk about this topic, and I thoroughly recommend her blog… go there now!!  It’s over at Coke Floats and Chemo and has a way of lifting you above the mud that you may be mired in.  Her work with doctors will, I’m sure, help little boys and girls like my Little Man, who grown into bigger boys and girls who are less afraid of doctors and needles than they would have been without her.

We’re home now, and he’s asleep – it didn’t take long after such a day!!  So it’s going to be time to get a bottle of Mummy’s best home made blend, plug it into the pump at one end, and into the boy at the other, and head to bed myself!!  Here’s to finding some answers at long last!

I’m back in front of a blank page.  As in previous sessions of this kind, I have no clear idea what I will write about.  I’m painfully aware that I have much in my heart, in my mind that needs to come out and find its therapeutic place on a page.  But my head and heart are so full, and being continually topped up with ever increasing emotional weight, that I have no space left for clarity.

A clear out is long overdue to allow for that space to more objectively manage the tangles within!

In the last few months I’ve faced some interesting tangles, the nature of which I have found intensely frustrating…  I am by nature a lover of the open book and simple honesty.  My tangles have recently involved the need for such discretion and tip-toeing that I am unable to be true to myself in a forum as public as a blog.  I have yet to find a satisfying way to deal with the delicate balancing of raw and honest emotion weighed down by responsibility and respect for others and dare I say it legal obligation to keep certain things to myself.

Of course, this wouldn’t be a problem if I were to journal in the tradition of paper and pen… My words, however indiscrete could hardly do any damage once brought to any public inspection since that would likely be long after… well, probably long after my death!!!

And yet, I come back time and again to the medium of the blog.  It is far more than the convenience of the keyboard over paper and pen (a wrist injury and hypermobile joints make writing painful).  It is more than the joy of adding pictures, photographs, links to websites and sometimes even video to the narrative.  And perhaps more strangely, its importance to me is far beyond the narcissistic
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