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PAVING THE WAY

I work with Additional Support for Learning Services (ASLS) and my role is to support children with Down Syndrome from birth through to secondary school, as well as supporting the families of whom I have the greatest respect for and feel an honour to be part of their journey.

During pre-school years, we demonstrate and offer suggestions of games, song, assist with routines within the home and crucially introduce signing.  We also visit Early Years Centres and Nurseries offering the same and supporting them when there is a need for adapting the environment or approach to learning for the individual. Children can often struggle to generalise a skill in a new setting hence the importance of being involved in both home and the nursery settings.

The transition from nursery into Primary 1 is monumental for every child, no more so than for the children and parents of individuals with additional support needs such as Down syndrome.  The introduction of The Presumption of Mainstream, a Scottish Government initiative to improve inclusion in mainstream schools for all learning abilities, has allowed parents a clear option for their child.  In order to make this choice successful, the school and the child need to be appropriately supported.

Lauren Elliott Lockhart, parent of two year old Trudy, is clear what her hopes are for her child’s future… “I want her to go to her mainstream school but I also want her to have access to teachers who have in-depth knowledge about how best to teach my child. I want her teachers to be excited about the prospect of learning new skills.”

Currently there is no compulsory course offered to student teachers to ensure that they are equipped with the strategies and knowledge of the wide range of pupils that they will inevitably have in their classrooms. The ASLS service is committed to try to bridge this fundamental gap and offers a great deal of courses and training opportunities for teachers and pupil support assistants (PSA).

As a result of an investigation that I carried out for Edinburgh City Council in 2006, I found that teachers who had a pupil with Down Syndrome in their class for the very first time, were concerned about their ability to help the pupils reach their full potential.  They felt worried, unprepared and somewhat de-skilled. Staff needed to feel confident, supported and knowledgeable.

Speech, language and communication underpins all areas of the child’s development.  It is not through clinical 1:1 sessions alone that children will gain their potential, it is ensuring that these are embedded in the everyday lives of the children and in all that they do.  

I teamed up with Speech and Language Therapist Caroline Rendle and by 2008 we had establish a model of training aimed at assisting teachers and PSA staff. The key to this training is the timing, training before the child attends the school. Teachers and PSA’s need to attend together so they have a shared knowledge of the strategies that can be vital to a successful placement.

The training has continued to follow the same model for the last 10 years with updates dependent on feedback from staff and the inevitable development of strategies.

So what does the training involve?

The training is provided to teachers working from Nursery school up to P7. Nursery staff are invited to attend a training session in January, prior to the child starting school the following August.  The training supports the concept of the Visual Support Project (VSP), which is run throughout the City of Edinburgh. Pupils with Down Syndrome are highly visual in their learning and the VSP helps to make it easier for them to make sense of the visual timetables that are key to their transition into school.

The strategies discussed include the suggestion that six months prior to the child going to school, the nursery introduces a loose visual timetable.  To introduce the ‘work’ symbol, the child works on three or four highly motivating activities that are presented in a start basket. As each ‘task’ is completed, it is moved to the finished basket. Initially, this takes place in a quiet room, to allow maximum concentration, but over time, the ‘Work’ is completed in the busy playroom.  Thus preparing the child for the P1 classroom and the expectation that they will be sitting at a table at some point in the day. The other symbol that is key for the child is ‘choosing’. The child needs to know that they can ‘choose’ after they complete their work as an incentive.

Primary 1 staff are invited to attend training in June titled ‘Preparation is Key’.  There are sessions for P2-4 staff and P5-7 staff which also take place in June. Each training session includes an introduction to ‘Signalong’, the Signing format that the City of Edinburgh has invested in to ensure continuity throughout schools. The follow-up session in September titled ‘Now You Know Your Child,’ focusses on assessing the level/ needs of the individuals and differentiating the curriculum accordingly.

Throughout all training, great emphasis is put on the need to enhance each child’s independence, thus supporting skills for life. The best PSA staff are those who can step back, supervising from a distance, prompting sensitively, optimising peer interactions, as well as balancing the intensive 1:1 programme that pupils follow.

Throughout the year, the pupils in Primary 1 and their staff are invited to attend the LINK Group.  The class teachers and PSA’s attend four sessions a year with their pupils with Down Syndrome. While the pupils engage in social games, and have access to sensory and soft play bases, the staff experience the ‘total communication’ approach i.e. using signing, visuals, song signifiers and routines to enhance learning.  Staff have training input from the school’s Occupational Therapist and Speech Therapist during two of the sessions.

Each child is unique and although the background training is essential, visits to schools for support staff in situ is still highly valued.  With the increase of pupils with Down Syndrome within the mainstream setting and the challenges brought on by cuts, these visits are inevitably fewer than they were 10 years ago, however, the model has been a constant.

Lauren Elliott Lockhart appreciates the support and feels that ‘……My daughter will not thrive in the mainstream without this. It is down to the wonderful role of the ASL service in our Local Authority to keep this balance correct, providing specialist support in a mainstream setting……

You can find out more about Isla’s groundbreaking special needs training programme at her plenary speech at the World Down Syndrome Congress in Glasgow between the 25th– 27th July 2018. For more information please visit http://wdsc2018.co.uk/welcome-professionals/

Biography :

Isla Ross is primary school teacher with a keen interest in working with pupils who have a variety of needs – this lead her to a five year post in an Edinburgh special school.  Having learnt many skills, strategies and creative learning techniques, Isla was appointed to open two Language and Communication Classes, which are resources attached to mainstream schools in Edinburgh.   In 2005, She was asked to look at the City of Edinburgh’s provision in mainstream school for pupils with Down syndrome. After observing many pupils and their experiences of school, she outlined a plan which aimed to provide continuity of support for both staff and pupils.  Twelve years on, the City of Edinburgh Council is still successfully delivering the model, which is very well received. Isla is one of the lead plenary speakers at the World Down Syndrome Congress in Glasgow between 25th-27th July 2018.

Written by  Isla Ross

 

A MAJOR ADJUSTMENT

Within a week of our daughter Sarah being born, a little over 26 years ago, my wife, Alison and I received a letter from Ken Hixon, a Hollywood screenwriter and a friend of a friend. This missive was to have a profound effect in coming to terms with the reality that our baby had Down’s syndrome. Here is an extract.

‘I am the father of Lilian Hixon, who happens to be one of my most noteworthy accomplishments. Lily is eight years old, a girl of extraordinary will, affection, humour and beauty, and lower on the list with her other vital statistics would be the notation ‘Down syndrome’. Lily is utterly unique, one of the most original people I’ve ever met… my wife, Melanie, and I rose, somewhat wobbly, to the challenge at hand. Not without pain nor tears, not without insecurities and confusion… I do get depressed. I am anxious at times, but most of the time, the overwhelming majority of the time, I am just in love with Lily. I would be lost without her.’

We were both incredibly moved by the letter from a man we had never met – not just the beautifully written content, but by the efficiency (pre-internet) with which the network had begun to spread the news. Lily, a complete stranger 6,000 miles away, had entered our lives in the same way that our own daughter had done a few days earlier. At that time, we were given no assurances that Sarah would be able to walk, talk or how long she might live.Was it really possible that she could achieve what Lily had achieved in only eight years? Could Sarah become a similar character – an individual, full of potential and with her own unique personality?

Ken’s message gave us hope – he and his wife had faced the very same situation eight years previously, and had not only survived the ordeal, but were now in love with their daughter. This ‘letter from America’ also demonstrated that our reaction to Sarah was not unique or parochial. There were other parents, the world over, who were probably experiencing similar feelings. We were already immersed in global community and one which continues to sustain us.

This universal support is exemplified by the 13th World Down Syndrome Congress, which takes place in Glasgow between 25th-27th July. Sarah and I are delighted to have been given the opportunity to address the Congress, which will be attended by hundreds of people with Down’s syndrome and their families, as well as healthcare practitioners, education professionals and experts at the forefront of research.

Attending the event will be a marvellous opportunity for people with Down’s syndrome to meet others in a similar situation and for their families to share experiences, hear about the latest research and best practice related to the condition, and to celebrate the milestones and achievements through presentations, performances and exhibitions.

Looking back, our fears about Sarah’s future were unfounded. We have been lucky. She received wonderful support at mainstream school, graduated from Foxes Academy, a training hotel in Somerset and she is now employed as a waitress at a hotel in central London, following an appearance on the Channel 4 reality television show, Kitchen Impossible with Michel Roux Jr.

Sarah loves her work, which she describes as ‘My dream job’, an experience unfairly denied to the vast majority of adults in her situation. There is much research to show the positive aspects employees with a disability can bring to the workplace. Sarah is hard-working and reliable and is valued as an equal member of a busy team. She takes great pride in being able to contribute to society.

We have come a long way from the days when babies with Down’s syndrome were written off at birth, children were denied a legal education and both children and adults were deprived of some medical interventions. Of course, there is much to be done: in England, iniquitous spending cuts are causing untold distress, a postcode lottery still exists in terms of resources, but Sarah’s generation is the first to be given a chance to make its mark. There is now the opportunity of a life fulfilled.

I look forward to meeting as many parents and professionals at the Congress and hearing experiences of the Down’s syndrome community from all over the world. And if you hear the phrase, ‘I Love My Life!’ ringing out (Sarah’s oft-repeated phrase) – that might well be her speaking – although it might also be the life-affirming view of a number of the attendees, who have Down’s syndrome.

Andy Merriman, author of A Major Adjustment, How a Remarkable Child Became a Remarkable Adult, published by Safe Haven Books.