Dyspraxia Letters

Letter to Prime Minister
Letter to Prime Minister (update)
Letter from Department for Education and Skills
Letter to John Hall
Letter from John Hall

Letter to Prime Minister

Since setting up my website, I have discovered that my story is not as rare as I had thought. I have received hundreds of emails telling me stories almost identical to my own. This made me feel angry and sad. I decided I wanted to do something to make dyspraxia more recognised, so that maybe one day, every child with dyspraxia receives the education they deserve in our UK schools.

On October 24th 2002, I wrote to the British Prime Minister Tony Blair about dyspraxia and the experience of many of the children I have heard about. This is what I wrote:

Dear Prime Minister,
My name is Matthew Alden-Farrow and I am 12 years old. I have the disability dyspraxia. Dyspraxia is a neurological disorder, which affects the way messages to and from the brain are sent and so this causes me difficulties with co-ordination of movement and thought. This means I find difficulty doing many things that others take for granted, such as using a knife and fork, riding a bike, running, walking through a door or crowd, following a list of instructions, concentrating, anything that requires co-ordination. I am clever but at school, I had problems getting my thoughts and ideas down on paper, because I find handwriting very difficult, I found it difficult to concentrate in a classroom and I was hopeless at sport. I also kept bumping into people by accident and this made them think I was naughty and aggressive. Because of these things I was severely bullied at school. The school did not deal with the problem of bullying, even though they were made aware of the situation on many occasions. My teachers did not understand my disability, which meant I didn’t get the help I needed to work properly. I was put onto stage 2 of special needs but the teachers told my parents that at this level, I was not entitled to very much help at all. Also, the ideas on my IEP were not used. The teachers called me lazy, stupid and clumsy and I fell further behind in my work, even though I am not thick or stupid. The bullying became so bad and my education suffered so much, that my parents decided to take me out of school and home educate me. I have been home educated since April 2001 and I am now progressing very well, because I have the use of a computer and my parents, who teach me, are very patient.

I have set up a website which explains about the disability dyspraxia and talks about my experience of bullying. I set my website up because I wanted to try and help others with dyspraxia and who were being bullied. I also wanted to raise awareness about dyspraxia, as many people have never heard of it, even professionals. Before I set up my website, I thought that my experiences were a one off thing, but since I set up the website, I have received emails from children with dyspraxia who are bullied at school and their teachers don’t understand them either. They are called lazy, stupid and clumsy too, exactly like I was.

I believe from the emails I have received that many teachers do not understand dyspraxia and so the children are not succeeding at school as well as they should. I would like to know when schools are going to accept that dyspraxia is a disability and give children with it the care and help they need. With proper help and support, they can be worth while students, in fact many with dyspraxia are gifted. One in every ten of people has dyspraxia, so why isn’t it treated as a recognised disability? Because our disability is an “invisible handicap”, people seem to think there is nothing wrong with us. Many children with dyspraxia are being failed and it will affect their futures. I hope you can help these children.

I thank you for your time and look forward to hearing from you.

This is his reply:

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Ok, so I haven't received a reply yet! Perhaps Mr Blair thinks we're not important enough? So I wrote a second letter with the first one enclosed. This is what I wrote:

Dear Prime Minister,
I sent the enclosed letter to you on 24th October 2002 and still have not received a reply. I have sent the letter again, as you may not have received it. Since October 2002, I have received more emails from children and their parents who have experienced or are experiencing the same things I went through at school. The emails are very sad and in most cases the children and their parents are not receiving the support and help they should from teachers. It is sad that in the year 2003 parents of children with dyspraxia are turning to a 12 year old child for help, when they should be receiving it from the education and health systems.

I hope to hear from you soon over this matter, which is very important to me.

I sent the above letter on January 3rd 2003. I await his reply. Watch this space.

30th January 2003

Big News! When I got up this morning there was a letter from 10 Downing Street lying on the door mat. Sadly, but not unexpectedly, the reply was not from Mr Blair personally, but from Fiona MacKinnon of the 'Direct Communications Unit'. This is what she wrote:

Dear Matthew,
The Prime Minister has asked me to thank you for your letter of 3 January 2003. Mr Blair was sorry to hear of your dyspraxia.

You refer to previous correspondence dated 3 January 2003 (I think they mean 24th October 2002) which we appear not to have received.

Mr Blair has taken note of all the points you raise in your letter. He would like to be able to reply to you personally, but as you can appreciate, he receives many thousands of letters each week and this is not always possible. He has asked me to forward your letter to the Department for Education and Skills which has responsibility for this matter so that they can send a detailed reply to the points you have raised in your letter.

Thank you for taking the time and trouble to bring your concerns to the Prime Minister's attention.

Yours sincerely

Fiona MacKinnon

We will wait and see what the Education Department has to say and then I shall take it from there.

22nd February 2003

I received a letter on the door mat this morning from the Department for Education and Skills. Here is what they had to say:

Dear Matthew,
Thank you for your letter addressed to the Prime Minister, Tony Blair of 3rd of January 2003 about Dyspraxia. Your letter has been passed on to this department first of all, and then onto me for a reply, as I work on the team in the Special Educational Needs (SEN) division that has policy responsibility for dyspraxia.

I was sorry to read of your experiences in your letter about the problems you have had at school with dyspraxia, and those of other children who have contacted you on your website. On behalf of the department, I would like to assure you that we recognise the very real problems and challenges faced by pupils with dyspraxia and the importance of schools and teachers being able to recognise their particular learning needs and to help them in the most effective way. We produced a Special Educational Needs Code Of Practice in 2001 which tells schools and local education authorities (LEAs) what their responsibilities are in providing a suitable education for all children with SEN, including dyspraxia.

The government is committed to developing an education service that makes sure all children and young people, including those with SEN, such as dyspraxia, are able to do the best they can at school. Because of this, we are investing large sums of money to help LEAs and schools support pupils with SEN, which in this financial year will equal £91 million.

We expect that a large proportion of that money will be used for training and developing teachers and other staff, including teaching assistants. Training for teachers in types of SEN such as dyspraxia would certainly be covered, but it is for individual schools and LEAs to decide how best to spend the money they receive, depending on local circumstances.

You mentioned in your letter that a common problem for children with dyspraxia is bullying. The department treats bullying very seriously and attaches a lot of importance to helping schools prevent and combat all types of bullying directed against pupils with SEN. As you have indicated in your letter, pupils with specific learning difficulties such as dyspraxia are not always able to tell others they cannot help having accidents and bumping into people does not mean they are being aggressive . Children with dyspraxia can be at greater risk of bullying because of this, but since 1999, head teachers of all maintained schools have been under a duty to develop measures to prevent all forms of bullying amongst pupils, including those with SEN such as dyspraxia.

In December 2000, the department also launched a new anti-bullying strategy, including amongst other things a pack for schools and a video aimed at pupils. The pack is called "Bullying: don't suffer in silence" and can be ordered from DfES Publications on 0845 602 2260. It contains a section on pupils with SEN and disabilities and provides information for teachers in how to help stop bullying of this type. We have also set up and anti bullying website at: www.dfes.gov.uk/bullying, which contains information for children and parents about bullying, plus a written version of the schools pack.

Yours sincerely

John Hall

What John Hall has said does explain what the department are trying to do to help children with special needs, but I am unhappy because he does not seem to understand that many teachers don't recognise dyspraxia as a special need. It doesn't matter how much money they put into special needs, if dyspraxia isn't recognised then it does not help people like us.

6th March 2003

I was a bit disappointed with the response I had regarding your comments about Mr Hall's letter but I have now composed a letter to John Hall. Here is what I wrote:

Dear Mr Hall,
Thank you for your letter dated 21st of February 2003. I was very pleased to learn that large sums of money are being invested into SEN.

I note that in your letter, when you refer to SEN, you always include dyspraxia. Sadly, many teachers, schools and even LEAs do not treat dyspraxia as an SEN, which is the problem I was trying to bring to Mr Blair’s attention in my original letter. From my own experiences and from emails that I still receive, I know that dyspraxia often goes unrecognised and, even if dyspraxia has been diagnosed, children often do not receive the appropriate help they need. I believe that this is because teachers are ignorant of dyspraxia and need training so that they can understand.

You say that LEAs and schools choose how to spend the money that is given to them by your department. Until dyspraxia is better understood by all teachers then many children with dyspraxia will not benefit from this money and their education will continue to suffer.

Much of the help children with dyspraxia need is simple. Things like, time, respect that they are trying their best and that their best takes real effort, kindness, gentle reminders to keep them on track and summary notes on topics, provided by the teacher, rather than having to sit and copy down notes from the whiteboard and being told to do them again if they aren’t neat enough!

I note your comments on bullying. You mention that children with dyspraxia are “not always able to tell others that they can’t help having accidents”. This is not the case. Children with dyspraxia are perfectly capable of telling others that they didn’t bump into someone, or jog them, on purpose, it’s just they are not believed. Children with dyspraxia have poor spatial awareness but in many cases teaching staff do not understand this.

I know that schools have bullying policies. However these are no use if the school fails to accept there is a bullying problem.

I am writing on behalf of all dyspraxic children in the UK and so would like to ask what action your department will take to ensure that teachers are better trained at dealing with dyspraxia. Is there any way you can distribute information leaflets about dyspraxia to schools? I feel one of the main problems is the lack of useful information available to teachers. I have had some teachers contact me, asking me about dyspraxia because they have been unable to find anything very useful about it anywhere else.

Is it possible for me to have a copy of the Special Educational Needs Code Of Practice so I can see for myself whether dyspraxia is mentioned?

I have enclosed some quotes from some of the emails I have received and would urge you to read them as they provide a real insight into how families are being failed.

I thank you for your time and very much look forward to hearing from you.

28th March 2003

I have received another reply from John Hall. I've typed it out below:

Dear Matthew,
Thank you for your letter of 7th March 2003, in response to my letter of 21 February 2003 about dyspraxia. I have read your reply with interest, and have the pleasure in enclosing a copy of the department's Special Educational Needs (SEN) Code of Practice as requested. The Code itself sets out the responsibilities on schools and local education authorities in providing a suitable education for all children with SEN, including dyspraxia. Specific references to dyspraxia within the Code can be found in parts 7:55 and 7:58.

As I mentioned in my previous reply, the Government does recognise the very real problems and challenges faced by children with dyspraxia and the importance of schools and teachers being able to recognise their particular learning needs to help them most effectively. The £91 million in this financial year which is supporting schools and LEAs to provide for children with SEN, will enable them to invest in training and development for teachers and other staff.

I appreciate the concern you raised in the your letter regarding specific training for teachers in dyspraxia, however the funding mechanisms which allow for money to be given to LEAs and schools are structured in such a way to enable them to decide how best to allocate resources at a local level, and prioritise the training needs of their staff. With this in mind though, schools and LEAs must have regard to the Code Of Practice in fulfilling their statutory duties towards children with SEN and this does act as an effective lever in ensuring that all types of SEN, including dyspraxia, are recognised and provided for across LEAs, schools and early education settings.

Yours sincerely

John Hall
Special Educational Needs Division

So what do you think? I feel that the letter was just another attempt to fob me off and keep me quiet. He's missed the point completely and I don't think appreciates the time and effort I put into my letters, or that I put into copying his for you all to see! I do, after all, have dyspraxia and my concentration is very poor, so it takes me a long time. I am thinking about what I'm going to do next. If anyone has any thoughts or ideas, please email me.

I have got the Code of Practice with me and I have reproduced a copy of the two sections where dyspraxia in mentioned. I have prepared a copy for you, which you can print. To read it, Click here.

Although my letters were sent back in 2003, this campaign is ongoing. If you live in the UK, have dyspraxia and feel you are not being treated fairly at school, please send your letters to the Prime Minister or your local MP and tell them your story. Together we need to make things better for future children with dyspraxia.