Monday 6 February 2012

The Surrealists' Manifesto

Right now, concentrate. Put that down, whatever it is and pay attention. You need a what? It's alright, I'll wait. Perhaps a cup of tea would be nice, yes.

Ok, so you're ready. Yes, I'm still here. Now, I'm going to tell you about something called a statement of educational needs and what it's like trying to get one. No, come back. No really, you do need to know this. It tells you everything about the way the government sees your child. And it tells you a lot about the pain and required patience of parenting a child that doesn't quite fit in.

Sorry. Yes alright I'll drop the martyred tone. (I'll try, anyway.) No, I didn't say anything then. Just clearing my throat. Ahem.

So. Imagine your child is not keeping up in class. If you're lucky her teacher will a. notice and b. care. Often if steps a. and b. are met then your child may be put on something called School Support, or School Support Plus. I don't know why we use the term 'put on' -- they're not drugs -- but we do. These terms mean that your child will receive a number of extra hours' help a week, usually on a one to one basis, with the aim of helping them catch up in the areas where they need extra help.

If after this has happened your child is still struggling and/or in distress then the school may suggest talking to an educational psychologist. (Unless your child only admits problems once he or she gets home in which case the school will tell you there's nothing wrong regardless of any further incidents, tra-la-la fingers in our ears, we can't hear you.)

At some point the educational psychologist will assess your child and may then decide that there's an underlying diagnosis to be made which will enable everyone to get the correct help for your child. You're told this will be the next step.

Now wait for a bit, probably several weeks. Or it could be months. No, I don't know why. No, I don't know precisely how long. Yes, you can ask. People will talk about "resources" and put the phone down on you.

Eventually you'll get a date for an assessment. This will be a couple of months further on again. When you turn up for your assessment you may also get the diagnosis then. It may happen that quickly because by now your child will be fairly upset or switched off entirely or generally disruptive. Let's pick a diagnosis -- let's say autism. You may be told this on the day, or you may be told this a while afterwards on the phone. You might get a letter. Or you could wait for a few more weeks and make a few more phone calls before someone will tell you.

Ok so now your child has a label. Congratulations. You've now been set apart from the mainstream, and if your child goes to an academy or any school which prides itself on results and academic prowess you may find that it is suggested you leave and go somewhere else more appropriate. Or you might just find that the school doesn't know what autism is and ignores the diagnosis. Or you might find that the school does want to help but doesn't have the resources to do so. They will start talking about something called a statement. If you're in this last category, congratulations. You have won the Golden Ticket. Really. You have. But you're a long long way off from claiming any prizes.

By now it's probably at least a year since you first had that conversation with your kid's teacher about something not quite being right. It may be several years since you had that first conversation with your kid's nursery teacher about something being not quite right. Feeling a bit uneasy and anxious? Get used to it. Camomile or mint tea are quite calming. So is running massively long distances. Or you could just open a bottle of wine. But be careful. You've got to be able to concentrate in the morning. You've got to be able to concentrate all the time in fact. You can't ever, ever not concentrate. Ever again.

So now you and your school have to ask for extra help from the local authority to get this thing called a statement of educational needs, which is basically like bestowing a bursary on your child, to be spent by whichever school they are at on whatever help they need. Take a deep breath. It's about to get even more complicated. Unless you're loaded and can just pay for a classroom assistant to be with your child all day, and give private tuition in the subjects they don't understand: hand over the cheque and everything is sorted. No, didn't think you could. Ok, so now you are in a process in which you ask for a statutory assessment.

There can't be something good on the telly, it's 4.30 in the afternoon. I promise I won't take much longer.

A statutory assessment is an investigation carried out by the local authority to find out what your child's special educational needs are and what provision is needed to meet those needs.

This is where you have to pay close attention. Are you listening? In order to request a statutory assessment to find out what your child's special educational needs are and what provision is needed to meet those needs, you have to first find out yourself what your child's special educational needs are, and ask loads of experts precisely what support your child should be getting and then ask loads of teachers to try to provide it. This will take about another year. Only when you have detailed precisely what your child's needs are, what resources your child needs and have bullied/coerced/begged the school's teachers and special educational needs co-ordinators to provide as much of that specialised teaching as is possible, can you then apply to the council to please establish what your child's special educational needs are and what provision is needed to meet those needs.

There is a special trick to this application. Get it right, and the council will agree to a statutory assessment of your child. Get it wrong, and they will throw out all of your paperwork and assessments and requests on the grounds that you haven't proved your point. I think (but I'm not sure) that you have to show there's a problem that you've tried to fix but that you can't quite do it. Woe betide you if you haven't tried hard enough, or if you have tried too hard and look like you may be doing ok on your own.

Anyway, no-one quite knows what this special trick is. Where I live, educational experts give workshops to parents on how to apply for a statutory assessment. They are not allowed to give them to teachers or special educational needs co-ordinators in schools. I have no idea why, but I suspect it's to make sure we don't all get together and figure it out. There's not a lot of money in that pot for extra help: they can't have hordes of people coming at them with watertight cases. So you have to really focus intensely on all the worst aspects of your child, all the most negative, upsetting, miserable experiences and difficulties they have. It's a bonus if you can get a doctor or two to say formally just how very fucked up they are.

So now you've sent off your letter. By now your child may well have just given up on school. He or she may be being bullied because they are so clearly separate from the rest of the class. He or she might not be sleeping. Perhaps he or she is having panic attacks. Excitement about new ideas and learning will have gone entirely out of the window.

If you're very very very very lucky and you discovered what that special trick was, you will be told six weeks later that the local authority thinks you have made a good enough case to assess your child and see if/whether/what kind of special help they need.

So then the local authority will begin its own process of evaluating your child and his or her needs. It will do this by asking all the same people that you asked to assess your child again. It will ask all those people to write the same reports that they already have. And it might ask for a few more, just in case.

This process takes six months.

At the end of it they can say no.

When that happens, you have a right to appeal.

How much do you know about the legal system in this country?

No, come back ...

Grace Under Pressure: going the distance as an Asperger's mum, will be published by Piatkus in October 2012


  1. Another fanatstic post from you Soph.

    I look forward to reading your book - and I've nominated you for a Liebster Award over on my blog!

  2. Hi, found your blog through Applepiewithwensleydale's post.

    As I was being nosey I thought I would leave a comment, I'm adding your blog to my blog roll so I can read more in future. I have a son with GDD & ASD (just looking in to secondary schools for him atm) and I also have a daughter who has quadriplegic CP.
    I'm well versed in the whole statementing process and the joys of it all.

    Will look forward to reading future posts, I think your blog is fantastic :-)

  3. Thank you both so much. It's great to find such support and friendship, and I'm really touched that you like my blog! x

  4. Sophie, just to let you know you have been nominated for a Liebster Blog Award. I've explained why on my blog!

  5. Thank you Ali! I've read your blog and am very touched.

  6. Sophie, what a lovely blog which I chanced upon after seeing your video on the UTV website for World Autism Awareness Day. We are having a second shot at the statementing route (we are suckers for punishment!) having failed at primary level but our son (soon to be 12) most definitely needs assistance at grammar school. I really wish that the council would work alongside parents instead of treating them like their worst enemies. :(

    1. The process as you are aware is long and has many obstacles put in your way to distract a less concerning parent. You have experienced this at first hand and my advice would be to look at what you could or should have done differently. Most importantly, do not take no for an answer, a lot of us have had that heartbreaking experience. Get a good nights sleep and tomorrow is another day for banging on doors, that will eventually open. Unfortunately it is at the cost of lost education time for our children. Stay strong and demand what your son deserves. Good luck

  7. Thank you. I wish you all the best with your second shot. Do you have a Parent Partnership representative there who can help? Worth sitting down with school (headteacher, SENco) and your son's case worker at the council and PP rep to work out a plan of action. Good luck.

  8. In my sons asperger universe, a SEN is one of those things that has attained mythical status, like the city of atlantis, holy grail and unicorns, although to be honest, I reckon I have more chance of seeing them than ever getting my hands on the elusive SEN!

    1. I totally agree to what you are saying as I have been there. The most important thing is that you do not lose hope in the minefield of a process that is aimed at helping our children. Take one day at a time and when one door closes, knock on two others, it will pay off. Good luck and stay strong

  9. Good luck Louise. You absolutely CAN DO IT. Don't let anyone persuade you otherwise. Just keep putting one foot in front of the other, and don't take 'no' for an answer. There are a lot of us who've been in your shoes, and we're rooting for you!

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