Guerrillamum's Blog

In which Guerrillamum discusses what it is like to have dyspraxia and wonders what is happening with the Green Paper on Special Educational Needs and Disability

A few years ago I was lucky enough to be invited to a parents’ support group for parents of children who had dyspraxia. This was held at our local hospital and was run by a paediatric occupational therapist and a paediatric physiotherapist. It was really interesting and I met a number of other parents who were like me trying their best to help their children.

One week we were offered a session that promised to give us an insight into the world of a dyspraxic child. Now, as a motivated parent who had done lots of research into this condition I thought I was pretty sympathetic to the challenges that my children went through every day. I knew that they had problems with handwriting, planning and organisation and in William’s case, speech. I knew that they were inclined to be a bit clumsy, and I was only too well aware of the social and emotional issues that they had. I expected that the session would be instructive, but would leave me with the certainty that I ‘got it’, that I understood my children’s world, as I so definitely felt I did. I was in for a shock.

The session was set up a bit like an assault course, with a number of ‘stations’. At each station there was an activity. Picking up dried peas whilst wearing boxing gloves. Yes, this was very difficult but hardly surprising. We were asked to walk along a balance beam whilst carrying a tray of objects – and yes, I did fall off and I did drop the tray. Then we were blindfolded and turned around, whilst people shouted things at us from different sides, then given the task of locating things – also a bit tricky, but I felt I was doing well! Then I arrived at the ‘heavy bucket’ station. I was given a blindfold and was led to the bucket. I was asked if I had any back problems, and told to pick up the bucket by bending my knees with a straight back as it was very heavy. I braced myself, lifted, and as I fell over the universe shifted. All that I thought I could count on to be the same as the last time I picked up a heavy load had gone. I had no point of reference for this strange task and I felt anxious and scared. There was NOTHING in the bucket. Yes, I had been tricked and cheated. I felt a bit of a buffoon, but as I picked myself up it struck me that my children must experience this all the time. They don’t have points of reference on which they can rely and for the first time I really understood why the world can be such a scary place for them.

They hadn’t finished with me yet! They smoothed my ruffled feathers and sent me on to the next station – I would have a chance to calm down, it was a little writing task. Off I went. I was given a mirror and a piece of paper with a star printed on it. It was a smaller star with a larger star around it forming a tram lines effect. The aim of the task was to hold the mirror up to the picture and to draw along the edge of the star, without going out of the lines to see if I could get all the way around it. The only rule was that I could not look directly at the paper, and someone held a piece of paper over it so I could not look down. I had to do the task whilst only being able to look at the star in the mirror.

Well, I don’t think I managed a straight line at all. My pen wandered like a demented spider and the more I tried to help myself, and to think through the process, to correct the direction of my pen, the more unsuccessful I became. I tried everything. Pushing the pen the opposite way to the way I thought I ought to push the pen. I tried shutting my eyes and just not looking in the mirror. I tried looking at the image in the mirror and just following the line, not with an end product in mind, but just to try to keep my pen within the lines. Nothing worked. In this reversed world I simply did not have the motor planning in my head for the task I had been given. I was lucky. I could take the mirror away, look directly at the image and finish the task with a few strokes of my pen. A dyspraxic child with handwriting difficulties does not have this option. For a few minutes I had an insight into their world that I never forgot.

When I carried out these tasks, I was doing it simply out of curiosity. I was in a supportive room full of grown ups who were all sharing this voyage of discovery. My children however, like many others, have to go through this experience every day in a challenging classroom environment, probably where very few people have any insight into what they are going through.

Dyspraxia is unlike many other disabilities. It is not so obvious, and there are many, many much more severely disabled children who also need resources in our classrooms. It is easy for the needs of dyspraxic children to not be prioritised highly in an inclusive classroom setting. However, I kept that star up on my kitchen door for years as a reminder not to either minimise my children’s dyspraxia myself or to let anyone else minimise the effects of their condition. This experience was also one of the factors that pushed us to ensure William had the right sort and amount of speech therapy for his verbal dyspraxia. We also decided to ensure both of our children had laptops specified in their statements at an early enough stage so that they could learn to use them and be ready for the more challenging school work they would need to do in KS3 & 4. William arrived at secondary school fully able to type on his laptop and at 14 Peter can also type well enough to support his GCSE and AS level work.

However it’s not all good. We still find teachers (who should know better!) writing things like ‘ Do on paper’ for homework or issuing worksheets with boxes far too small for Peter to be able to write in. Having watched Peter ‘draw’ every letter because he does not have the motor planning for writing, I often think how frustrating it must be to be
verbally eloquent but to go to school in a world where you are judged mostly on what you can write. So when a senior staff member at the school said that he could not take
his laptop into her lessons I was adamant that we would fight this. We did and we won. He can now type essays on his own.

How has this been achieved? Teaching assistants helped William and Peter to learn to type in school, with specialist typing programmes on laptops provided for them as part of their statements. It wasn’t easy and we had some battles en route but without those very dedicated TAs and the statement providing for laptops for them to work on at school and home, their continuing success would not have happened.

Without adjustments such as these Peter and William would not be able to access the curriculum at all. I hope that some of the critics who think that money spent on SEN is for frivolous extras read this and can now understand that this provision is critical and a necessity, absolutely fundamental to their success.

We are still waiting for the Green Paper on SEN and disability. The silence is ominous and frightening. I look at what the government is doing with Disability Living Allowance and it is clear that they have no respect for the quality of life of people with disabilities. The government were able to use emergency powers to force through the Academies legislation. They did the same thing regarding Free Schools’ legislation, which will benefit only a very small minority of most probably non disabled students. So what is going on with Special Educational Needs and Disability? Sara Teather we are waiting and watching to see what you do next.

A difficult time…

Things have been a bit difficult in our house lately because Peter has been having a challenging time at school. Believe me, having written a book on parenting children with special educational needs is no guarantee at all that you will have all the answers when things unexpectedly fall apart at school. One of the other children with special educational needs has been bullying him, and after two and a half years of relative calm, and being in what he has considered to be a safe place, Peter has gone to pieces. I understand the difficulties for the school in managing the needs of all children involved, and also their obligation to continue to meet everybody’s needs. It must be much more difficult to manage bullying situations where the bully has special educational needs. I have had the somewhat humbling experience of finding it incredibly difficult to take my own advice in dealing with the school. I have got upset both with and in the company of teachers. I have had to bite my tongue and not tell Peter that what the other child really needs is a good thump! Me and the Guerrilla Dad have had a number of disagreements with the school over their handling of the problem.

Lets face it, I was never going to deal with it well if Peter ever was bullied again at school. But right now, at the beginning of year 10, and his GCSEs, with the new modular style of exam, where he is already beginning to do work that will count to his final exam results, we just can’t have this. The possiblity of him leaving school with a creditable number of GCSEs looked to be eminently feasible at the beginning of the term. Now it is looking much less likely. Peter is trying to take refuge in computer games. He is no longer on top of his game and sometimes has no idea when a test is coming up. He is emotionally a little boy again in many ways. It makes me so angry.

We have now reached an agreement with the school about how to manage the bullying, and I really hope things get sorted out quickly. I am watching to see if the school does the things they have agreed to do. One thing that has leaped out at us with absolute clarity during this time is that you can’t overstate the necessity to have the right physical and emotional learning environment for children with special educational needs at school. It has also not been much consolation to know that everything is going well for William at school – it has just made Peter’s situation look and feel so much worse.

I have turned to reading books to try and get some ideas for dealing with these things. There are some really good ones from Jessica Kingsley Publishing, and I have decided (with their agreement) to review a few on this blog. So watch this space, I will tell you which ones help me to make this situation better. The practice of analysing something written by someone else will also come in handy for when Sarah Teather’s Green Paper on special educational needs and disability is published. Lets hope she makes a better job of it than OFSTED did!

Onwards and upwards…. Ellen P