Why you need to read this book
Does your child have:
• autism (ASD)?
• Asperger’s syndrome?
• Fragile X or other chromosomal disorder?
• hearing problems?
• sight problems?
• physical problems?
• learning problems?
or is in some other way disadvantaged so he or she needs extra help to cope with mainstream schooling?
If so, you will need to plot a course through the special educational needs system. This is often very tricky indeed and can be very isolating.
There is a legal process that must be followed if you want to try to achieve your aims. We learned this piece of wisdom very late and to our cost.
We want to enlighten you as to your legal rights in all this. Sometimes those in authority will ‘forget’ to tell you about your rights and you and your child are then at a huge disadvantage.
Definition of special educational needs
Children have special educational needs if they have a learning difficulty which calls for special educational provision to be made for them.
Children have a learning difficulty if they:
(a) have a significantly greater difficulty in learning than the majority of children of the same age
(b) have a disability which prevents or hinders them from making use of educational facilities of a kind generally
provided for children of the same age in schools within thearea of the local education authority
(c) are under compulsory school age and fall within the definition at (a) or (b) above or would so do if special
educational provision was not made for them.
Special educational provision means:
(a) for children of two or over, educational provision which is additional to, or otherwise different from, the educational
provision made generally for children of their age in schools maintained by the LEA, other than special schools, in the
(b) for children under two educational provision of any kind (Section 312, Education Act 1996)
I was asked the other day what would be on my ‘wish list’. I wished that I could have been given a book thirteen years ago (that was when we
adopted and unwittingly entered the twilight zone of special educational needs) that contained the knowledge that I have now. It would have saved our children, and us, years of difficulty and heartache. I genuinely hope that this book realizes one of your wishes too and helps you to avoid some of the elephant pits into which we fell.
This practical survival guide, written with genuine empathy and warmth with a dash of humour, will, I hope, help you through the quagmire of jargon and personalities you will encounter on your journey through the parallel world of special educational needs to a successful and happy outcome for your child.
You may think you haven’t the time to read yet another book when all you want is to get help. But I urge you to read on so that you can learn
from our mistakes. You should be able to achieve far more, and in a much shorter time, than us, as we stumbled around the system trying desperately to get assistance and being thwarted.
I have tried to write this book in the order I think would be most helpful. I might have got this wrong, however: it might be helpful if you start off by reading what happened to our children (Chapters 8 to 13).
For ease of reference – I know how busy you are with your children – I have tried to break the book down into manageable chunks so that you
can dip in to find the piece of information that is relevant to where you are right now on your particular journey. I’ve waded through so much
legal stuff that sometimes I’ve forgotten what I was looking for in the first place! The chapters which are specifically about my children are
long but I hope you’ll forgive me. There was a lot to tell!
There are other books out there. They will tell you what should happen under the rules of the system. The difference with this book is that it tells you what really happens.
Maybe something we say might ‘ring a bell’ with you. You may recognize certain behaviours or problems. I want to inspire you because I
am so pleased to tell you that as I write this book our older children are doing really well now. After all their traumas they are experiencing some
happiness and success. Now that they are receiving the correct help they are busy and productive in their own ways.
My daughter Alice is now nearly twenty and, although still emotionally wobbly, is doing so well. The older boys are happily working their socks off in their various colleges and schools. We are still investigating the extent of our youngest son Jack’s difficulties but it is likely that he will have to move to a more supported educational placement. All this hard work was worthwhile and I do so hope that my advice will help you and your children.
We had such a miserable time. I want to show you what is possible, against all the odds.
The stress of the continual fight with authority, added to the strain of actually caring for your special needs child, is enormous and should not
Realizing you need help is a hard step to take, as it involves an element of admission of failure on your part (although in reality you have
certainly not failed!). However, getting help is often much harder.
The divorce rate for couples with special needs children is allegedly twice the national average. This is a tragic and alarming statistic, but hardly surprising. Our experiences took us ‘to the brink’ as a couple. Somehow we have clawed our way back into our relationship but the strain has taken its toll. It surely needn’t be like this.
Legislation has to be changed so that the parents and carers of children with special needs can work with those in authority instead of the people
in authority spending huge amounts of precious resources fighting the parents who are only trying to get help for their children.
Our LEA engaged a barrister on two occasions to fight us. Talk about a tank against a pea shooter!
It is difficult to marshall a united front of parents and carers, as they are generally so exhausted they don’t have time to attend meetings and
canvass MPs, etc. Their voice and therefore their concerns continue to go unheard.
If you have a child who has special needs there would appear to be legislation in place to allow you to access help for them. So on paper this
is seemingly simple – maybe because the piece of paper has been written by a professional who goes home in the evening to a peaceful environment
and isn’t up half the night either worrying about her child or trying to stop him running off into the night. Perhaps that professional won’t have nightmare Christmas experiences, disastrous holidays, a house that is being broken up around her, a child who may be very violent or suicidal (because he is so confused, frightened by life and unhappy), a lifestyle that is so complicated (because where do you find a ‘babysitter’ for a sixteen- and seventeen-year-old who can’t be left on their own?) that going out becomes a distant memory and friends who don’t understand what is going on in her life disappear over the horizon, leaving her lonelier and more isolated than ever.
We fervently believe that life shouldn’t be like this. Life as a carer for children with special needs can be extremely rewarding, as well as
extremely exhausting. There is supposed to be a system in place which will help you to establish the most appropriate lifestyle for your child,
but at the moment there is inequality as to who can access it.
For example, I trained and worked as a secretary. Whilst I am not brilliantly computer literate I can at least type very fast and string a sentence or two together. This has been invaluable in our fight. However, if you are outside the circle of those in the know and have few skills you are immediately disadvantaged. Whilst it is not impossible to succeed you could have a very hard time. It really is like trying to find your way through the Hampton Court maze – without any of the fun!
You will see that we not only waded through the Statementing procedure for Richard, but then had to fight two tribunals on his behalf
to achieve a Statement that accurately reflected his difficulties and put in place appropriate help for him.
We hope this guide will provide you with a map to negotiate the twists and turns, avoid the blind alleys and achieve your goal of appropriate help for your children, whatever their age, so that they may live safe, fulfilling and happy lives.
I’m not trying to be controversial or frightening but we were naïve and our children have suffered hugely because of our ignorance. This
book shows you what we did wrong, and the consequences. Then what we did right, and the consequences. It is an honest appraisal of our
experiences from which I hope you will draw something useful for your particular circumstances.
In our experience, those in authority will sometimes actually mislead, or cover up information.
After ten years (yes, I did say ten years!) of trying to get our eldest child assessed and ‘digging’ uselessly for information we requested early years medical files for another of our children and found in that file the proof that Alice should have been Statemented when she was six years old. Sadly, she was sixteen by then. We have therefore learned to rely on nobody but ourselves. We found that there may be social workers and people in the education system but they all had a different agenda to us.
We are the parents of four adopted children: Alice, Alex, Richard and Jack. All of them, it transpired eventually, had special educational needs.
The older three have now been diagnosed as being on the autistic spectrum (Asperger’s syndrome – or so near on the spectrum as to make
no difference) and Jack, the youngest, is dyslexic. Unfortunately we know that he is not just dyslexic but also has other problems. All have
challenging learning difficulties.
We have now been through the Statementing procedure more than once and have learned a lot from our mistakes. Let me help you to avoid
the snares that await you if you are not careful.
Although it can be a long and difficult process, knowing what you’re doing helps enormously. There are people and organizations out there who can help you – if you know where to find them.
We became swamped with paperwork. Boxes and boxes of the stuff. It took us a long while to get organized as we had no idea of what we
were getting into. I hope that we can give you some helpful suggestions there too.
We have spent long years wrapped in red tape. Let us help you cut through some of it and spare you some pain.
Jargon busting and understanding short forms
I’m not including this in an index at the back. You need this information before you start this book. People in the SEN world use a bewildering range of language and short forms so it needs to be at the front where you will notice it. See, I’ve just done it. SEN = special educational needs.
You have to get used to this as you will no doubt have to go to meetings and enter into correspondence. I hope that this section de- mystifies the language for you so that you no longer feel at a disadvantage.
One of our friends went to a council meeting where the ‘Ed Psych’ was mentioned throughout. At the end one of the councillors asked: ‘Which one was Ed Sike?’
LEA local education authority
SEN special educational needs
ASD autistic spectrum disorder
LD learning difficulties
SENDIST special educational needs and disability tribunal
SN special needs
NAS National Autistic Society.
When you enter the world of SEN, you will suddenly be introduced to a huge range of characters who are vitally important in your child’s life and they will usually be referred to in some shortened form.
SENCO special educational needs coordinator
EP educational psychologist (sometimes ‘Ed Psych’)
PEP principal educational psychologist
SALT speech and language therapist
SS Social Services
CDT Children with Disabilities Team, part of Social Services
ADT Adults with Disabilities Team, part of Social Services
Natspec the Association of National Specialist Colleges.
Important ‘buzz words’ to remember: ‘appropriate’ and ‘best value’. ‘Multi-agency’ may also be mentioned. This refers to occasions, for
example, when representatives of Health, Education and Social Services (or some of these three) may come together to discuss your child, or act on your child’s behalf.
So there we are, and if I slip into short forms just think of my tired little fingers typing this and please forgive me.
Entering the world of special educational needs
If your child has problems then he needs and deserves appropriate help. It is his right. He will probably require a ‘Statement of Special Educational
Needs’. ‘What’s this?’ you ask.
If we had properly understood the significance of the power that a Statement of Special Educational Needs wields, our lives could have
been very different. The Statement is the passport you require to access the extra provision for your child. Without a Statement your child won’t get the support he needs; a situation serious enough at school, but with grave implications for the future.
A Statement of Special Educational Needs is a document drawn up by the local education authority of what the child’s requirements are and
how they plan to implement a strategy to address those needs. You will find a breakdown of Richard’s original Statement in Chapter 2.
Now read on, intrepid and courageous traveller, and we will endeavour to guide and help you. Learn how to change from a mild-mannered Clark Kent to a ‘velvet bulldozer’ instead and, most importantly, survive the experience!
Copyright © Sandy Row 2005; Source - This is an excerpt from Surviving the Special Educational Needs System: How to be a
‘Velvet Bulldozer’, and is posted here with the permission of the author and the publisher, Jessica Kingsley Publishers.
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