Tom's Adventures in Mainstream: eight tips for better school inclusion of pupils with special educational needs and disabilities

                                                              

When Tom was nine he left his mainstream school and started at a special school.  While we’re delighted that Tom is now in what is a more enabling environment for him, we’re reflecting on how Tom’s experience in mainstream could have been more inclusive.  The mainstream school was keen to be inclusive:  the Head teacher had a wonderful attitude and knew and loved all the children in the school.  Socially, ethnically, and on behaviour issues the school did seem to be very inclusive:  what could they do to include children with Special Educational Needs and Disabilities (SEND) more successfully?

Before listing what I think are the top eight tips for more successful inclusion, first a bit about Tom himself.  Tom's condition, Duchenne muscular dystrophy (Duchenne or DMD for short), means he has weak muscles, poor balance, and poor coordination – he can’t run and writing by hand is laborious and difficult for him.  He needs various adaptations to help him sit and write, including a keyboard. 

Many children with DMD also have cognitive difficulties, summarised by difficulty processing information.  Like water on clay soil, information takes longer to absorb and too much information at once is overload.  Anything which needs a lot of process – like joining up letters to read words – is difficult for Tom, thought he can tell you loads about many subjects and has a lively curiosity.  You can appreciate the challenges for a child like Tom in mainstream:  taking in teachers’ instructions, recalling vocabulary, other children’s fast-moving games and social interaction, dealing with transitions from one task to another and the hustle and bustle of the school day, and most significantly how Tom learns and the pace of his learning.

What can be done to address better the needs of children like Tom in mainstream?  Well, an education revolution so all classes and schools are much smaller, with a higher ratio of teachers to pupils, would help, though that would not in itself be sufficient.  In my view, eight tweaks even to the current system would effect significant improvements.

1.    Enough Special Needs Co-ordinator (SENCo) time

In my son’s mainstream school there were over 400 pupils and a more than average proportion of pupils with special educational needs, including pupils with Down’s Syndrome or on the autistic spectrum.  But the Special Needs Co-ordinator (SENCo) was there only two days a week.  There needs to be enough time for the SENCo to work with teachers and teaching assistants (TAs), time for the SENCO to follow up and evaluate the success of teaching strategies, time for the SENCo to go into classrooms to observe pupils, time for the SENCO to get the advice that they may need, time for the SENCo to liaise with outside agencies.  In our case none of these things were happening to the extent that they needed to happen.  For example, it was me, not the SENCo, who met with the local authority SEN ICT advisory teacher to get some ICT resources for Tom’s computer, resources which could also help other pupils. 

2.    Time for teachers and teaching assistants (TAs) to plan together

Tom’s TA would have about thirty seconds between hearing the teacher’s instructions for the class and starting work with him, to take in the learning objective and task, decide how much of the task Tom could engage with, how to break the task down into more manageable chunks, and what, if any, alternative strategies or resources to use.  Without planning ahead of time it was extremely difficult for Tom to do differentiated tasks with other pupils.  As you’ve probably guessed, I have a teaching background and the year I learned most was when I planned together with a TA.  We both worked part time and had our planning meetings in unpaid time.  We should not have had to do that:  contractual time should be scheduled for such meetings.

3.    Adequate training for class teachers to support pupils with SEND

It is crucial for classroom teachers to have adequate special needs training, because in the current system the usual chain of command is that the classroom teacher tells the teaching assistants on a daily basis what they need to be doing with their pupils with special needs.  The SENCo is there to support, to offer ideas, and to help evaluate strategies (though in our case there was little evidence that this was happening).

Teachers need to be more trained in concepts such as task analysis, backward chaining, and differentiation.  For example, Tom’s class had to do ‘free writing’.  So Tom was given a pencil and paper and ‘freedom’.  His teacher told me afterwards that he ‘made some marks and wrote the word ‘the’.  Tom would certainly have had plenty in his mind to write about, so why couldn’t his free writing have been more supported?  .  Why could he not have used a keyboard?  And an ICT programme to prompt him with the sight words he knew?   Both of these resources were sitting in the stock cupboard.

If the teacher had been adequately trained she would have seen that what she had done here was differentiation by outcome – in other words, throw the children in at the deep end and those who succeed are those who make it to the shallow end without drowning.

4.    Adequate training for special needs teaching assistants (TAs)

Teaching assistants need to have adequate training to carry out the tasks they are expected to do. They need to be trained in the pedagogical concepts which underpin their work with pupils with SEND, because they are the ones who work with pupils day to day, the ones who on a daily basis are fine-tuning teaching strategies, evaluating them and looking at next steps at the micro-level. 

Though the chain of command is from class teacher to TAs, the remit of the class teacher is the whole class.  While the teacher may have the big picture, in our experience class teachers don’t have the time to plan and evaluate in detail the work for pupils with special needs – it’s the TAs who have the day to day picture and the teacher needs the feedback from them.

When teaching assistants don’t have sufficient grasp of their work, it is letting down our children with special needs and also the teaching assistants themselves.  Many TAs are parents.  They feel strongly the importance of giving children the best possible start in life; they want to help provide that for their pupils.  How can they undertake complex teaching tasks to support the learning of pupils with special educational needs if they don’t have adequate training?

5.    Information and computer technology

Have computers and programmes more readily available in classrooms and ensure that SENCos, teachers, and TAs have working knowledge of SEND-supportive programmes.  By SEND-supportive programmes I mean ‘shell’ type programmes which are designed to be tailored to individual pupils’ learning and physical needs, not ready-made activities you can just put pupils in front of.

There was a long saga in trying to get a computer for Tom at his mainstream school.  Finally my brother stepped in and got us a laptop.  We bought the Clicker and Clicker Paint programmes for it.  Then there was another long saga in making sure the teacher and TAs were confident to use the computer, with me going in several times to talk them through it.  The local authority Physical Disabilities Support Service was great, going into school numerous times to train and support.

6.    A curriculum which allows for a variety of learning styles

When Tom was in Year One his mainstream school had poor results in literacy.  So the following year they instituted a school-wide phonics programme.  This was an improvement – a systematic approach to literacy which mapped the territory.  But it was inflexible.  And Tom’s Year Two teacher was inflexible.  At the start of the year she told me that to learn to read ‘you go from letters to words to sentences’.  Readers do need to learn phonics at some point, but it doesn't have to be the initial approach to reading and it doesn't have to be the only approach to reading.  Phonics is process-intensive, which is Tom's cognitive weakness, and it doesn't use his strengths, such as visual memory.  Progress was extremely slow.  To address this the SENCo prescribed an extra fifteen minutes per week of phonics.  Not analysis of Tom’s difficulties and lateral thinking about solutions, just more of the problem.  

The children learned phonics through worksheets.  In Year Two Tom spent at least two terms doing handwritten worksheets overlearning letter-sound correspondence.  He began to hate school.

Though the endless worksheets were heart-sinking, Tom did end up knowing his letter sounds.   At home we started teaching him sight words – ‘word of the week’ – and with this and his knowledge of letter sounds Tom began to read.  Excitedly he would ask ‘what is the word of the week this week?’ and suggest words that he would like to learn to read.

While phonics was taught in each classroom, outside in the corridor, by coincidence right outside Tom’s classroom, was the makeshift base (made of display boards) of the Reading Recovery teacher.  Reading Recovery is a one-to-one multi-approach pupil-centred reading programme, designed to accelerate learning for pupils experiencing literacy difficulties in the mainstream classroom. 

In Year One I asked the SENCo if Tom could join the pupils on the Reading Recovery programme.  No, she said, he’s too old.  Couldn’t the TAs have some training in Reading Recovery?  No, it’s a year-long intensive training course.  She did later try to get Tom on the programme, but didn’t chase it up and nothing came of it.  In the meantime I went to the local university’s education library and after the equivalent of about three working days with the key book had a summary of Reading Recovery – enough to cover its basic principles.  With the support of Tom’s Year One class teacher I gave this to his TAs.  It was difficult for the class teacher to give input to Tom’s learning because she was incredibly busy, having just been made Key Stage One co-ordinator and PE Co-ordinator.  Tom’s TAs had little training, no time to plan, and apparently no SENCo support and in those circumstances it was difficult for them to put the Reading Recovery approach into action.  In Year Two the class teacher was slave to phonics alone (though towards the end of the year she did begin to acknowledge the sight word approach).

7.    Appropriate accommodation for pupils with SEN

In Tom’s school, pupils with SEN often worked with their TAs out in the corridor, with the attendant noise and distraction.

8.    Challenging an unthinking culture of discrimination

At a meeting of the school’s disability equality working group I raised the point about the accommodation for pupils with SEND.  One of the school’s governors said ‘Accommodation is always a problem – always has been and always will be’.  I said ‘Maybe you’re right – and if it’s a problem, how about the top groups learn in the corridor and pupils with special needs learn in quiet classrooms?’  She looked stunned at this suggestion. 

At one point I went in to observe for a morning in Tom’s classroom.  When the class split for a task into lower and higher attainment groups, it was the class teacher who took the higher attainment group, while the TA – without teacher training and paid less – took the children who were more vulnerable and who had more complex and challenging learning needs.

Tom’s class had an overnight school trip to an outdoor activity centre – and the letter from the school said that they would like to take all the children.  Tom’s teacher did not book accommodation for him, accommodation which included an overnight carer and which met health and safety regulations for a pupil with reduced mobility.  Was this just forgetting, or an assumption that Tom, being disabled, wouldn’t take up his curriculum entitlement or share the aspirations of his peers?

Conclusion

In our experience, these are eight issues which need to be addressed, eight tweaks which could be made in the current mainstream system to improve inclusion for pupils with special educational needs and disabilities.  In Tom’s mainstream school they were the key ways to translate into inclusion the wonderful, genuine, and laudable love which Tom’s Headteacher had for the children in the school. 

Some of these tweaks are about money:  paying for SENCO, teacher, and TA time and training.  Some of them are about good pedagogical practice:  having the concepts to support pupils with special needs and the curriculum to nurture a range of learning styles and enable pupils to use their strengths to overcome their difficulties.  Some of them need funded local authority support to provide continuing professional development and specific training. 

But the really key issue, the foundation of all inclusion, the driver of all practical measures, is a school culture which recognises the equal aspiration and entitlement of all pupils and is committed to solving or working round any problems which may arise.

And a final note:  on Tom's final day at that school, he brought all his accumulated phonics worksheets home, a great big telephone directory sized pile of them.  He put them in our wood burner. I helped him light the  match and he burned them all.

DMD life expectancy, and talking about it with a child living with DMD

A week ago we told eleven year old Tom about the life-shortening aspect of Duchenne muscular dystrophy.  This was a conversation we had been anticipating and dreading ever since he was diagnosed with DMD aged four.

It was on Saturday morning, after we had had a nice time looking at a book together, and before breakfast. Tom and I were sitting on the sofa.  I said, 'There is some more you need to know about Duchenne, now that you are getting into the teenage years.  Most people with Duchenne live to around thirty years old.  But the scientists and doctors are working hard to find effective treatments, so people with Duchenne can in future live longer lives.'  Pause, while he took this in.  Then:  'It's important that you have accurate information, because other children might look up things about Duchenne and say things to you that may not be right. You can say to them, 'Most people live to thirty and scientists and doctors are working hard to find effective treatments, so people with Duchenne will be able to live long lives'.'

Tom said 'So most people with Duchenne live to thirty...'  and I finished off '...and scientist and doctors are working hard to find effective treatments, so in future people with Duchenne will be able to live long lives.'


Tom then said 'You don't have to rub my feet when we're talking about Duchenne'.  I realised that I had been mechanically massaging Tom's foot as we had been speaking.  Then he said 'Can we have breakfast now?'

It was clear that Tom had taken in the basic message, but also clear that it was something he would absorb over time.

There were quite a few things we considered in the background to this conversation.

One was the principle:  tell the truth, but be positive.  What we told Tom is the most positive spin on the current situation. Thirty is to my knowledge the average life expectancy for people in the UK getting good standards of care.  And there is a lot of research going on;  the message is one of hope.

Another was the timing and who would tell him.  It needed to be a quiet time, when Tom would be fresh, and when he would have some time after the conversation to take it in.  Tom's dad and I decided that it would be one of us, not both, who had the initial conversation, to keep things low-key.

Another consideration was the fact that we had given Tom information about DMD over years preceding this, in a 'drip-feed' way, responding to his own questions and observations.  He already knows about the things he has observed and he has asked questions about DNA and dystrophin.  However, this conversation was different.  It was different because it did not arise naturally from something he himself had observed (such as older boys using wheelchairs full time) and it was always - obviously - going to be outside our comfort zone as parents.  How far it is outside Tom's comfort zone I don't know.  I don't think being thirty - or dying - is something that he can envisage at the moment (though it will be as he gets older).  He has met lots of scientists at the Action Duchenne conference and he is on a clinical trial, so the current work on effective treatments is within his existing experience.

It is very difficult to give this information to kids so young.  What made us have the conversation now is that Tom is in contact with other children who can look up DMD on the web.  We needed to tell him before he heard from other, possibly inaccurate or hurtful, sources.  We are lucky in a way that we were able to wait until he was eleven.  Tom's DMD-related information-processing difficulties mean that his literacy is still too limited for him to look up DMD himself; also he attends a special needs school where most of the other kids are unlikely to look it up either.  But just this year his social horizons are expanding and he is additionally spending time with other children in mainstream settings.

A further consideration for us was the impact on the rest of the family.  Before we had the conversation with Tom we had to think about how we as parents are handling these huge and difficult issues; what are our different attitudes, how can we communicate about them, how can we agree a way forward?  What is the impact on our emotional health of dealing with the fallout of information?  We didn't know how Tom would respond; would he be traumatised and how would we as parents cope with that and best support him?  Clearly we need to keep listening and supporting Tom in whatever way is helpful to him as he absorbs the information. As Tom is an only child we didn't also have to deal with the possible impact on siblings.  But grandparents and other people close to Tom will need to be in the picture about what he knows and about ways to support him. And these are of course huge issues for them to take on too.

Over the past year or so we have consulted the children's psychology service at our local hospital, who have given us a lot of help and support to handle these issues.


Another background consideration is having plenty of positive, affirming, self-esteem building things going on for Tom as well as this difficult information.  To make sure good things are happening, things where Duchenne is not invited.  Some examples:  Tom has fun at an art club, at the moment he's loving mixing colours and experimenting with fabric dyes.  He loves acting too, making up stories, putting on funny voices, being different characters, and hanging out with other kids who love all that stuff too.  Recently we've got a dog; she's a wonderful friend and it's satisfying and good fun training her.  We make photo albums of all these good things Tom does.  We are upfront about his qualities as a people person, a creative person, and some one who enjoys getting out and about and finding out about the world.

It's a relief to have all the information about DMD in the open, and not feel that there is something we fear Tom finding out.  But it was also traumatic to have the conversation.  The afternoon of that Saturday we went to a party.  I was in a bit of a daze.  Looking around at those other people there I just wanted to shout 'This morning I told my son his condition is life-shortening, oh god, oh god, oh god'.