Disability, Employment, Preparing for Adulthood, SEND

Awards are not that we have made it, but proof that organisations are trying to get better!

By Maya Thomas

Awards, I have found are very marmite – you either love them or you don’t.  But do they convey much more than just winners and possible winners? The recent Disability Smart Awards are a great example of this.  Led by Business Disability Forum, these awards where a celebration of breakthrough, innovation and better best practice in businesses, large and small, when it comes to inclusion in the workplace for those with disabilities.

We arrived at the Locarno Suite at the Foreign & Commonwealth Office and found our place at a table with others who were also finalists for various awards. We sat with representatives from the Dubai Police, Bank of England, Vindhya e-infomedia and the Highways Agency – each team with a story of making real change for those with disabilities. Each team representing organisations going well beyond what is a legal requirement or policy minimum.

What I really enjoyed was, that it wasn’t just projects that had won that were given the limelight. Our hosts, including Paralympian, Stef Reid, gave a brief synopsis on each of the finalists before the winner in each category was announced. There were so many people in the room who are being responsive in their focus on workplace inclusion and transforming the life chances for those with disabilities.

Herbal Essences won the Disability-Smart Design Award 2019 for a change in design on their bottles that makes it possible for those who cannot see, to tell the difference between the shampoo and conditioner. To put it simply, there are now indentations on each bottle to differentiate one from the other – such an ingenious and brilliant idea!

Herbal essence

The Dubai Police were finalist for numerous awards, and they won the Disability-Smart Technology for All Award 2019 for creating the World’s first smart police station free from human interaction. The impact of this project is cutting edge for everyone, especially where anonymity is vital. In this case, real barriers to access have been removed.

Towards the end of the evening the hosts did a superb job adlibbing for about 10 minutes, delaying the announcement of the Disability-Smart Workplace Experience Award 2019. There was a hushed entrance and the seating of a late guest, before it was announced that MI5 had won the award! Having gone the extra mile, the award was in recognition of 10 years of “Raising Awareness, Removing Barriers and Fulfilling Potential” in the workplace, particularly for those with disability and ill health.

The stories that where shared that night, where often personal and I enjoyed meeting many wonderful people at the awards. It was inspiring to be in the room with people who are passionate about influencing and transforming the life chances and experience for those with disabilities. And, as a finalist for the Disability-Smart Influencer Award 2019 #TeamADL we were in great company, which was a real honour!

#TeamADL are passionate about bridging the gap between education and employment, giving everybody opportunities to thrive in education, employment and life. If you feel are able to get involved, or if you already have a project that is making a difference in this area, please do get in touch. We love to hear stories of what is already happening out there, and journey with others for greater creative solutions. Better still sign our #SENDcareers Pledge or view our case studies page.

To find out more visit #TeamADL

About Maya Thomas

Maya wears many hats! She is Anita’s part-time PA and also Operations Lead for #TeamADL Her role continues to grow and evolve, as Maya unfurls the many layers her skills and talent.  In her own time, Maya gives to the local community as a SEND Governor and takes an active interest in her children’s schools.

#Curriculum, #Teaching&Learning, Early Career Framework, Parenting, SEND

Meeting Jonathan!

By Anita Devi

Last month, I had the absolute privilege of meeting Jonathan Bryan !!! I’d been following Jonathan’s story for awhile on Twitter @eyecantalk and in the press.  I’d read his book, which I highly recommend, so I wanted to meet him and his mum, Chantal.  I had so many questions.

This blog is my attempt at summarising an incredible three hours spent with Jonathan, at his home.

Dual Multiple Exceptionality (DME)

My interest in children and young people, who had special educational needs and were more able started around 2007.  Working with different agencies including the National Association of Gifted Children (now Potential Plus), I was keen to find out how we identify and encourage the ‘ability’ in ‘disability.  I researched case studies from America (where DME is referred to as Twice Exceptional or 2E), I delivered a few presentations/ workshops and more importantly, I incorporated it into my practice as a SEN Advisory Teacher, undertaking statutory assessment. Around the same time, The National Strategies also launched their thinking around DME.  The discussion was beginning to develop momentum. We were starting to distinguish between identification and support strategies for those born with a disability, who had DME and those who had acquired a disability, after the more able aspect of their talent had been discovered e.g. Professor Stephen Hawking or Jean-Dominique Bauby (Diving Bell and the Butterfly).  Three years on and post-election, the signs in Whitehall had changed, as had the government agenda for education.  DME was put on the back burner.

Despite this setback, I continued to research the subject.  My interest homed in particularly on assessment, especially since ‘Life without Levels’ and the Engagement Profile / Scale research by Barry Carpenter and his team, was a great opportunity to further this discussion in special schools with head teachers.

Almost 10 years after I first started looking into DME, Pearson published a two-part blog by me on the subject.  The article was entitled, “What can’t my child excel and have a difficulty / disability at the same time?” Part 1 | Part 2.  Eighteen months later, nasen published their Current State of Play Report on DME.  Professor Stephen Hawking became a Patron of nasen, however as mentioned earlier, his was an acquired disability.  There is still much to discover about children born with a disability, who are cognitively able, but not always endowed with the ability to express it.

I do not want to give away too much about Jonathan’s story, as I really would encourage you to read his book.  Through ‘Eye Can Write‘, I met Chantal his mother, understood the circumstances leading up to his birth and the many difficulties they faced after he was born, including times when the hospital gave Jonathan hours to live.

Eyes Can Write

Jonathan is now 13 years old.  He has no voluntary control over his body or speech, and he is on an oxygen tank.  He has two younger sisters and a very busy schedule.  Jonathan was attending a school for children with Profound and Multiple Learning Difficulties (PMLD), when one of his teachers noticed active cognitive processing, behind his disability.  Long story short, Jonathan moved into mainstream, learnt to read, communicate in his own way and thrived.

Here is a reverse poem, he wrote recently for Poetry Day (21st March 2019).  Using the structure of an existing poem, Jonathan created his own, giving a voice to his thoughts and ideas.

Poem v2

So, what happened when I met Jonathan?

My first question was to Chantal.  Given all that has happened and the challenges, how is it you remain so calm?   Smilingly Chantal replied,

There are days, when the oxygen masks haven’t arrived or something else isn’t in place … and it can be overwhelming.  But I have a choice and I intentionally choose not to be angry.  It isn’t always easy, but the anger doesn’t solve anything.  If anything, it creates more problems.

Chantal, his home-teacher (Sarah) and I continued talking about many things … at which point Jonathan interrupted us.  Using his eyes, he spelt out the following message to me,

I just want an education system where we are all considered worthy to be taught and learn.  How can I make a difference, Anita?

Yes, he knew my name!  Part of my curiosity about Jonathan also stemmed from his phenomenal working memory.  Imagine using your eyes to point to a letter in a word, a word in a sentence, a sentence in a paragraph and a paragraph in a context/ chapter.  That’s what Jonathan had just done!

Reflecting on the discussion, I realised, we had been talking about provision in special schools and sensorial experiences.  Whilst these are necessary and helpful, Jonathan was trying to communicate to me … there is SO much more to us that just ‘experiencing’ a sensory stimulation or curriculum.

So, let me share some more golden nuggets, Jonathan spelt out to me, with his eyes:

I would love that if people see what is possible, maybe they will want to try and unlock others.

My story is not unique, and it should be shared.  I don’t have long here, so what should I spend my time doing?  I am a thirteen-year-old … and I’m always hungry!

I dream of every teacher finding ways to teach every child.

… and finally,

  • Trainee teachers need the why
  • Teachers need the how
  • Parents need the what
  • Leaders need to believe

What an incredible blueprint for teacher – leader development and the Early Career Framework.  I have no idea how the time passed … we covered so much.  But it was noon and Jonathan had to get ready for school.  As I drove away from their home … I was in awe.  This young thirteen-year-old had taught me SO much!  He had understood what we had discussed and responded in a way, that stretched our perceptions to a new level of thinking and believing.  What an absolute privilege! I was inspired and humbled.

JR Photo Medley v2

Jonathan and his family have set up a charity to focus exactly on what we spoke about, unlocking potential.  The charity is called ‘Teach us too’ and the remit is simply ‘to change the experiences of others in a similar position’.  There are some great plans for the charity to develop over the next year and #TeamADL very much look forward to walking alongside Jonathan and the charity in advocating the message “Teach us Too”.

Call to action:

Think about the children and young people you teach:

  • Are there any who have a special educational need and/or disability AND are more able?
  • What further research do you need to undertake about DME?
  • Does you setting have a policy and more importantly provision in place to ‘unlock’ and support DME?

 

About Anita Devi

Anita has had an extensive career in education.  Her why is based around the ‘joy of learning’.  As such, she focuses on what enables learners and what hinders them and more importantly, what can she do to improve the system.  Amongst many other roles, Anita leads #TeamADL

To find out more visit www.AnitaDevi.com

Employment, Preparing for Adulthood, SEND

‘She can’t get a job’, they said!

By Anita Devi

In this blog, I aim to introduce you to three young people, who have disabilities and have much to offer the world as adults, if we just look at things a bit differently!

NB: Whilst, the names of individuals involved have been changed, their stories remain true.

#1 Meet Sonia (pseudonym):

Sonia can type, Sonia has qualifications, Sonia is bright and has an agile mind.

‘She can’t get a job,’ they said.

Sonia types with her feet, she has cerebral palsy.  Sonia is digitally literate. She has a Level 2 qualification and is about to leave college. She able to undertake a desk job; if only someone would give her an opportunity and the encouragement to try.

I spoke to some employers and entrepreneurs about Sonia as a hypothetical case study. My questions were:

  • What would you want to see on Sonia’s application / CV?
  • What reasonable adjustments would you implement at recruitment, interview & induction stage to include her?

Responses included:

  • If someone has that sort of drive to overcome an adapt in such a big way makes me want them on my team right away.
  • Wow! I personally would think what a wonderful addition to the team.
  • Being adaptive to the needs of disability isn’t always straight forward but once you have a workflow that fits in place it works just fine.
  • I would like to see all the good stuff they can do to add value to the team first and foremost. Then something honest about any issues they might have/special requirements. And then perhaps something about how they’ve dealt with the challenges life has thrown at them and it’s made them extra valuable (something positive, but not too long and drawn out).
  • I personally would be in awe and would want to interview them ASAP, but I know not everyone would think like that.

There were also some concerns raised too:

  • The part that makes me nervous is, what if they were given an interview and were unsuccessful. Would this be perceived as discrimination?
  • We would need to think about how we broach the subject of time off for medical appointments etc. Of course, they need to go, and we would do our best to adapt. However, it is something we would need to consider.
  • We would need to research how we could access on-going specialist input to train our other team members, to support them too?

A final point made the employers / entrepreneurs in this dialogue:

“Great questions, really got us thinking …”

#2 Meet Sam (pseudonym):

Sam can’t speak, he can’t read either.  Sam needs routine.

“Let’s see what you can do”, they said.

Sam now works one day a week, in a company as a Secure Information Officer.  What he does is shred highly sensitive papers.  The work is routine, and highly valuable to the employer.  Sam feels part of the team.  He enjoys going into work. It is the highlight of his week and he has found ways to communicate with colleagues.  Annually, he attends a work social.  Being there, with other matters to Sam.

#3 Meet Alpha (pseudonym):

Alpha is at college.  He has dyspraxia.  He almost didn’t make it to college!

This is what his mother had to say,

When Alpha was in primary and secondary school, I put so much pressure on him to do his mobility exercises.  I gave up work, just to make sure I could be with him.  I also wanted the school to provide a lot of different support interventions and resources in place.  This just made Alpha switch off.  He resented school.  I thought it was because they weren’t helping him, or he found it hard.  It wasn’t – he wanted me to give him space to find his own answers.  When I stepped back, which wasn’t easy.  When I stepped back, and let Alpha say more about what he wanted or what helped him, he improved.  Our relationship and the stress at home also got better.  To be honest, I felt a bit redundant.  Every mum just wants to protect their child.  More so, when they have special needs or a disability.  But sometimes, you have to let go and like the saying goes, less is more!  He didn’t need every intervention, just the things that supported him most.  I had to learn to listen and not always put forward what I thought he needed.  He was hard.

I didn’t think Alpha would ever go to work, but I do now.  He can solve problems.  It takes him time … but he finds his way, if I give him space.”

Three very different scenarios.  Preparing for Adulthood is a major part of the SEND Reforms in England (2011-2018).   However, we have a long way to making this a reality.  We all have a part to play in changing perceptions, asking the right questions, creating opportunities and giving young people the space to flourish, for themselves and by themselves.

#TeamADL are keen for young people and adults with disabilities to thrive. This is why we are working with a range of stakeholders to change and improve opportunities.  It is not an easy journey and the #SENDcareers project, together with our Wiki Succeed digital advocacy access tool and multi-agency response team are still in the early stages of development.  We, however, have BiG dreams!  Our drive is to create and build sustainable inclusion.  So, this is our question to you: How will you journey with us?

Do get in touch to find out how you can get involved … there is scope for everyone to contribute and make a difference.

Further reading: SEND Gatsby Benchmark Toolkit (2018)

About Anita Devi

Anita has had an extensive career in education.  Her why is based around the ‘joy of learning’.  As such, she focuses on what enables learners and what hinders them and more importantly, what can she do to improve the system.  Amongst many other roles, Anita leads #TeamADL

To find out more visit www.AnitaDevi.com

Employment, Purpose, SEND

What’s your story?

By Anita Devi

This week (4th – 8 March 2019) brings together four main events:

It is therefore, not by chance six months ago when we started planning our first #SENDcareers event, we chose this week.  The World Health Organisation with The World Bank published the first ‘World Disability Report’ in 2011.  At the time, it stated about 15% of the world’s population lives with some form of disability, of whom 2-4% experience significant difficulties in functioning.  It is important to remember, these are only the cases that are known.  A colleague working in assistive technology, recently shared with me, given a rise in the retirement age, this number is much higher.

In the Foreword of the World Disability Report (2011), Professsor Stephen W. Hawking, shared the following:

Disability need not be an obstacle to success. I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a prominent career in astrophysics and a happy family life. Reading the World report on disability, I find much of relevance to my own experience. I have benefited from access to first class medical care. I rely on a team of personal assistants who make it possible for me to live and work in comfort and dignity. My house and my workplace have been made accessible for me. Computer experts have supported me with an assisted communication system and a speech synthesizer which allow me to compose lectures and papers, and to communicate with different audiences.

So why does the #SENDcareers project matter to #TeamADL?

Our overall mission is about:

Strengthening Localities

Within this, though we recognise a wide range of vulnerabilities that need addressing.  Supporting people with learning difficulties and disabilities into the workplace and sustaining them in such dynamic environments is vital for individuals, families, employers and communities.

Different companies like Microsoft and Apple are developing a number of ‘lifestyle, open access tools to help. We have also come across various organisations working to develop vocational opportunities for those with disabilities.  We commend all these efforts.  However, we believe, there is a need to do more.

We want young people and adults with special educational needs and disabilities:

  • to have a voice
  • to tell their story and define their story going forward
  • to ‘own’ their abilities and future
  • to advocate for themselves, so they can experience independence and choice
  • to be connected and part of a community

To do that, we need to give people a platform to tell their story that is safe, empowering and forward thinking.

That’s why we’ve teamed up with The RIX Media Centre at The University of East London to utilise researched technology to give people with disabilities a voice to tell their story.  We will be sharing more information about this in due course.

For now, here is a statement about the partnership:

TeamADL RIX Partnership

… and pictures of us working with Ajay Choksi, Wiki Master at RIX.  One of Ajay’s goals this year is to travel by himself to an unknown place, using public transport.  He has used the wiki to communicate his goal, his plan, what it would look like and celebrate success.  This is part of his story.  Regardless of what profession we are in, isn’t this what we do every year?  As part of his wider travel plan, Ajay wanted to learn to drive.  He plots his full journey of taking both the theory and practical test, through his wiki.  Another story part to his life.  By weaving all these sub-stories together, we develop an understanding of Ajay’s life … and his story.

Ajay at RIX

Stories are powerful.  They embrace a beginning, middle and end. This short video I made for UKEd Chat Conference highlights the need for stories to be at the heart of person-centred approaches.  Stories aren’t just about, what has happened, but also what could happen.  They bring to the forefront possibilities.

Recently, I was privileged to visit The Book Trust to review a range of books for secondary special schools.  One genre particularly fascinated me.  In this book, the pupil reads a page and then makes a choice.  The choice determines which page is read next.  Then there is another choice and so the journey continues.  It was great to hear from librarians in special schools how much pupils enjoy these types of books.  The book brings together not just alternative endings, but also different scenarios, journeys and new possibilities each time.  To me, it is such a reflection of life and the choices we need to give young people.

At #TeamADL we do not claim to have all the answers, but we are keen to ask the right questions and explore possibilities and different solutions in partnership with young people, adults, families and employers.

The #SENDcareers Project is relatively young, but we have BIG plans.  So, if you are interested in keeping up to date with developments, do sign up for our termly newsletter.  We will be sharing new solutions and good practice case studies, as part of the editorial.  We will also provide readers with updates on the use of wikis in employment.

Further reading

Can Sam have special educational needs and be more able?

Change my story: ’Facing the abyss’

About Anita Devi

Anita has had an extensive career in education.  Her why is based around the ‘joy of learning’.  As such, she focuses on what enables learners and what hinders them and more importantly, what can she do to improve the system.  Amongst many other roles, Anita leads #TeamADL

To find out more visit www.AnitaDevi.com

 

SEND

SEND: We need to learn to synthesise information better!

By Anita Devi

Over the last two months, I have doing more in-depth work on the ‘Four Broad Areas of Need’.  This has included training, talking to parents, writing, working with leaders in a variety of roles and I’ve been looking at the quality of Education Health Care Plans (EHCPs).  In this blog, I seek to raise some of the unanswered questions, that I think is hindering the effectiveness of the SEND Reforms being realised.  This is not a fait accompli piece, just a few current thoughts.

I have already contributed some of my thoughts to the current #SENDInquiry Here I specifically wish to focus on how needs are synthesised to form a holistic picture of the child or young person.

The construct ‘Areas of Need’ (a legacy of the SEN Code of Practice 2001), I believe evolved from the shift in thinking from a medical model to a social model of disability in the 1970s.  However, it probably become more relevant when considering data analysis of need.  The SEND Reforms (2011-2018) saw a shift in emphasis in one area of need; from behaviour, emotional and social development (BESD) to social, emotional mental health (SEMH). These ‘areas of need’ are not directly referenced in the primary statutory legislation (The SEND Regulations / Children & Families Act 2014). However, they are discussed in the secondary statutory instrument, known as The 0-25 years SEND Code of Practice (2015), SENDCoP hereafter.

My own interest in the ‘Four Areas of Need’ and working with settings on this, since the SENDCoP was originally published in 2014, was triggered by 6.25, which states,

When reviewing and managing special educational provision the broad areas of need and support outlined from 6.28 below may be helpful, and schools should review how well equipped they are to provide support across these areas.”

At this point, I’m sure many colleagues may possibly think, ‘Oh she’s talking about Provision Mapping, Provision Management or SEND Reviews’.  I’m not, though there is some overlap.  For me, 6.25 goes further than just a review.  It’s about strategic leadership that is supported by a depth of knowledge and resources in all four areas.  It’s an understanding of holistic educational provision.

The second nudge for me came from The Rochford Review 2016 (Recommendation 3):

“Schools assess pupils’ development in all 4 areas of need outlined in the SEND Code of Practice, but statutory assessment for pupils who are not engaged in subject-specific learning should be limited to the area of cognition and learning.”

Hence began my work with a wide range of stakeholders on:

  • How well do settings / local areas assess in the four areas of need?
  • How well resourced are they to support the four areas of need?

The conversations have been varying and some dovetailed into work I undertook with local authorities on developing a ‘Written Statement of Action’, enhancing consistency of decision making for Educational Health Care Assessment (EHCAs) and EHCPs, as well looking at the quality of Assessment Advices that contribute to an EHCP.  Since 2011, working with Pathfinders and others, I’ve been in involved in numerous quality assurance (QA) activities on EHCPs; with a vision to see how this can be included as part of the 20-week cycle, not after the plan has been issued and agreed.  Other #TeamADL members are also looking at the QA process of EHCPs.  Sadly, I have yet to see a gold standard EHCP or see a system that embraces a QA process, as part of the 20-week cycle.  This has made me question several things.

Under the previous system, Statements were assessed and issued in a 26-week cycle.   We struggled to QA fully then, often taking just a random sample of cases.  What made us think, we could improve the quality of plans in a shorter time?  In pursuing speed, have we compromised further on quality?  The 20-week cycle is enshrined in law, but it is certainly something we need to consider.  Would families be happier with a slightly longer timeline, knowing that at the end of it, they would get a better quality plan that has been quality assured?

Back to ‘Areas of Need’. As a previous SEND Advisory Teacher, who use to undertake statutory assessment and sit on Panel, I recall how much time and thought I had to put into evaluating the diverse and what sometimes appeared contradictory evidence to truly narrow in on need and identify what was required in terms of support.  In reflecting on support, I also had to consider, whether the proposed intervention was long-term or short-term.  Was it to develop an adaptation independence skill (e.g. social stories on safety) or move a child or young person on to the next point, or indeed, was it something needed long-term (e.g. visualiser)? Since the SEND Reforms, these are not questions, I see colleagues asking and I genuinely feel we should.  Implementing short-term support, does not take away from the need of the child.  Instead, if accurate and appropriate, it provides a way of managing and supporting needs through inclusive practice.

Four Areas of Need

Prior to this role as an Advisory Teacher, I led SEN in a school, as a SENCO.  I was never keen on discussions about primary need or secondary need.  I insisted my team saw the four areas of need as a Venn Diagram.  So, we discussed overlaps, consequential needs etc.  The conversations amongst us as a team and with families were far more constructive.  Our approach rippled out to any external specialists commissioned for their input.  What this meant was we started see coherent and strategic multi-agency working.  On many occasions, in my SEND Advisory role, I recall undertaking joint observations assessments with members of other teams.  When we saw OT waiting lists were not being met, across local authority teams we worked on up-skilling setting staff on universal & targeted provision for co-ordination difficulties.  The impact – waiting lists went down and children’s needs were met in a timely manner.  Imagine that change model with mental health and CAMHS!  This is one of the many visions behind #TeamADL and the work we do in #MentalHealth

A carer recently said to me,

“When we were struggling with two boys with severe attachment issues, we had conflicting advice from social workers, psychologists, and others.   We worked a lot out for ourselves which meant sourcing and reviewing a lot of information ourselves.  We are a lot more therapeutic with our practice now, but even now there are those who don’t understand or agree with how we approach things. Many different voices, plus of course every child is a total individual, so therapies may or may not work with them. I love the multi-agency approach, but I suppose a lot of ongoing cooperation and flexibility is required.”

So, what next?

I think national changes in assessment and curriculum do give schools more autonomy and flexibility to be inclusive.  However, settings and practitioners need to give more thought to synthesising information and seeing the ‘whole’ child, as they progress into being ‘whole’ adults too.  I have always encouraged settings to align their vision / mission statement to the principles of the SENDCoP (p19, Section 19 CfA).  However, we now have a mandate to align these principles (which are universal and apply to all children/families) to the ‘intent’ and ‘implementation’ of any curriculum we deliver.

The second item on my wish list: I’d like to see those who write Assessment Advices and those who use them to write EHCPs become more intentional in how they synthesise information.  Demonstrating joint-up thinking in practice and provision. Considering the child, as a whole.  This takes skill and I do feel more training is required in this area.

Finally, I would like to see a more robust approach, at local authority level regarding how quality assurance can be brought into the system.  Not as an after-thought, but as part of the process.  This may involve changes in the law and extending the timeline.

To conclude the SEND CoP (6.27) is clear: (underline added)

These four broad areas give an overview of the range of needs that should be planned for. The purpose of identification is to work out what action the school needs to take, not to fit a pupil into a category. In practice, individual children or young people often have needs that cut across all these areas and their needs may change over time. For instance, speech, language and communication needs can also be a feature of a number of other areas of SEN, and children and young people with an Autistic Spectrum Disorder (ASD) may have needs across all areas, including particular sensory requirements. A detailed assessment of need should ensure that the full range of an individual’s needs is identified, not simply the primary need. The support provided to an individual should always be based on a full understanding of their particular strengths and needs and seek to address them all using well-evidenced interventions targeted at their areas of difficulty and where necessary specialist equipment or software.”

We, therefore, have the responsibility to make this a reality.

Postscript:  It is my intention to share further thoughts on ‘well-evidence’ interventions at a later date.  For now, if you are interested in finding out on what we are doing around the ‘Four Areas of Need’ – do get in touch.  As I shared, we have other members of #TeamADL also involved in the QA of EHCPs.

About Anita Devi

Anita has had an extensive career in education.  Her why is based around the ‘Joy of Learning’.  As such, she focuses on what enables learners and what hinders them and more importantly, what can she do to improve the system.  Amongst her many other roles, Anita leads #TeamADL

To find out more visit www.AnitaDevi.com

SEND

An ode to an Autism Friendly Christmas

By Louise Lawrence and Dr. Rebecca Varrall

It’s beginning to look a lot like Christmas… the festive season is rapidly descending upon us in all is chintzy glory!  While this build up can be exciting to some people, others with Autism Spectrum Condition (ASC) can find the changes to routine, the increased social demands and the sensory overload all too much. This season does not have to spell disaster though, and with planning and support we hope that everyone can enjoy Christmas how they want it to be.

Autism is a lifelong condition which impacts people’s lives every day. People who have ASC may experience the world in a different way. ASC is often described as a ‘hidden disability’ as the difficulties people experience in the world are not obvious to those around them.  ASC is a disability that society needs to understand in order for neurodiverse people to be valued and included.

A feature of ASC is processing sensory input like sounds, smells and touch differently. Have you ever been on holiday to a remote place where there is no traffic noise, there are sounds of nature and tranquillity and then you return to the city and your senses are reeling; you feel overloaded by the lights, sounds, smells and pace of life. This level of heightened sensory sensitivities is what people with ASC face daily.

The lights are starting to twinkle, the bells are almost beginning to jingle and the smells of cinnamon and mulled wine are starting to waft in the air. As the days get shorter, the build up to Christmas season begins, and yes, this does seem to be earlier each year… we’ve have put together a chorus of carols to help you to have autism friendly Christmas.

‘Dashing through the snow’

  • Christmas can often be a hectic time with changes to the usual routine – as the old saying goes, be prepared (as much as possible). Without structure, people with autism can be left feeling confused and worried.
  • Do try to stick to your usual routine to keep things the same as much possible – if you choose to eat Christmas lunch at 11.30 am because that’s the usual then so be it.
  • Use calendars and visual aids to help countdown to events and support people to cope with changes to routine.

 ‘Jingle Bells, Jingle Bells’

  •  With lights, sounds, smells and the season changing the sensory information can be overwhelming.
  • Try to involve the autistic person with choosing and putting up decorations in the house. They may appreciate being in charge of the switch for the lights to help give a sense of control.
  • Trial ear defenders for sensory overload.
  • Prepare a space in the house or classroom where there are no Christmas decorations which can be a calm space to retreat to as needed.

‘Good tidings we bring’

  • Surprises such as presents can often cause anxiety in people with autism so limit the number of presents or try using cellophane to wrap.
  • Limit the number of visitors to the home and ask friends and family not to come unannounced.
  • In social events make sure you plan how long you will stay and know how to leave easily should it become too over stimulating.

 ‘Simply having a wonderful Christmas time’

  • The shops can be heaving with people whether you are going to the supermarket or Christmas shopping for gifts. You know your child best; can they cope with the hustle and bustle of Xmas shopping? 
  • If you do venture out, perhaps a social story to explain that the shops can be very busy at this time of year, if you think it would be too much for your child perhaps think about online shopping or going shopping without your child.

 ‘All I want for Christmas is you’

  • If some situations are too much for you or your child to cope with, choose your battles and allow them time and space to cope with the festivities.
  • Don’t put too much pressure on yourself – make time to do activities you know you enjoy whether this is 10 minutes outside the home, scanning Radio Times for Christmas plans, or a soak in the bath, remember to focus on you.

Christmas has different meanings to different people and is bound up by family traditions.  Christmas is about taking the time to spend with family and making memories together. So, whatever you do this year relax, indulge and enjoy from all at #TeamADL 

Christmas 2018

… heads up, #TeamADL January 2019 blog will focus on Speech, Language & Communication Needs.  Till then.

Additional resources:

For further ideas to plan for the Christmas season please see the National Autistic Society website www.nas.uk

About Louise Lawrence and Rebecca Varrall:

As members of #TeamADL, Louise and Rebecca lead on identification, support and provision for children and young people with Autism.  Their combined experience and expertise in Language Therapy and Clinical Psychology enables them to consider holistic solutions to meeting the needs of children and young people with ASC.  They believe passionately in focusing on a person’s strengths and harnessing those for children and young people to live independent fulfilling lives.  To find out more about how Louise and Rebecca’s work visit: https://www.anitadevi.com/team-adl.php

Preparing for Adulthood, SEND

Change my story: ‘Facing the abyss’

By Cole Andrew

Last month, I was privileged to meet and listen to ‘the story’ of young people’s journey towards adult life from two key perspectives; parents and the young people themselves.  One story was told by parents of young people with learning difficulties and the other by the young people themselves.  This was part of a research project I am involved in.

As a I reflect on my experience as a Head teacher in Special Education, I think particularly about the shared story that most special schools have; namely a focus on developing life skills in readiness for adult life.  Over the years, as a team, we did a lot for the young people in my care.  I’m now at a place, where I want to influence the story beyond the day the young person leaves the secure setting of the school and support the increasing number of youngsters with learning difficulties that are being educated at home (80% increase in home schooling in the last 5 years).

The stories I heard recently have given me a deeper experience of what I felt I knew.  Three key messages resonated with me:

  • Parents / carers have hopes and dreams for their children but struggle to feel truly part of the ‘route mapping’ or even understand what the adult life opportunities might look like.
  • All young people have a story to tell about their education; their views on this can provide invaluable incite to shaping the foci for their education.
  • Many young people and parents struggle to see what lies beyond the day they leave the education system (home or school based).

Hopes and Dreams

Whilst listening to the parents and carers of these youngsters, I was overwhelmed with a sense that everyone shared a similar story. Their initial hopes and dreams for their child had been shattered, when their child was first diagnosed with learning difficulties.  They talked about their shared experience of loss and the bereavement process they had to go through on the way.  As a foster carer and a parent of young people with autism, I could empathise.  I recounted the story analogy ‘Welcome to Holland’ written by a parent of a child with Downs Syndrome.  Our initial expectations may not be met, but we can still find ways for young people to live fulfilling lives as adults.  The overwhelming feeling in the room was the sense of anxiety about the inability to see the opportunities for their children in adult life; a strong sense of ‘facing an abyss.’  What will they do? Where will they live? How will they live? Who will support them when I’m no longer here?

Young People’s Story

The reality of co-production has yet to be realised.  Maybe we were ambitious in our vision or possibly naïve.  However, the bottom line is, there is so much to gain by giving young people and families the space ‘to tell their story’.  A parent (@StarlightMckenz on Twitter) shared her thoughts last December via this blog.

How can the story and journey of these young people be better told?  In the project I am now part of we are particularly interested in hearing/telling the story from the young person’s perspective.  I certainly do not want to suggest I can ‘fix’ the issues raised here single handed.  I simply ask the question; how can we help these amazing young people and their supporters to see a clearer picture beyond the ‘abyss’?  The story needs to have at least a sketched outline for the later chapters.  How can we better ‘co-produce’ the journey and experience of the story for these youngsters?

Beyond the abyss … access to the workforce.

One young man’s story was particularly compelling for me.  He has significant physical impairments requiring full time care and support.  Cognitively, he’s sharp as a razor, putting my aging brain capacity to shame!  His story centred around a heartfelt desire to be valued and give value into the community he lives.  He sustained placement in mainstream education, achieved GCSE outcomes and went to college.  Then he faced ‘the abyss.’  No career opportunities opened, due to complexity of the benefits system, support he needed to live independent life and due to the inaccessibility of the workforce arena.  Year by year his demeaner began to lose its shine, he would smile less and spend long periods of time feeling depressed and frustrated.

The turning point in this young man’s story was meaningful work, even though he is not paid.  This is another issue for debate.  However, his whole demeanor and self esteem has grown exponentially by securing week by week, year by year meaningful and valued contribution in the work place.

#TeamADL are hearing similar stories to this, all too frequently.  In response to this, we are seeking to find tools and opportunities to support and develop young people.  One aspect of our work this year is to develop tools to help them overcome some of the barriers to accessing the workforce community.

Together with Anita Devi, and other collaboration partners, we are pleased to announce our #SENDCareers Event on March 9th, 2019 for young people (16-25 years) and their families /carers.  We will release more information about the day and a sign-up link in the new year.  The event will be held at the Network Rail HQ in Milton Keynes.  We are really excited about this.  This is not an event, where young people are given lots of information, to go away and digest.  Our model is different – it’s about listening and dreaming BIG … together.  It’s about showing young people what’s possible.  It’s about rekindling the hopes and dreams of parents and carers.  The event is FREE to attend.

On the day, we will also be sharing a new tool to help young people take up a vocation and support them through workplace induction and further development into promotion.  It is a tried and tested technology and we will be sharing case studies of how it has transformed the lives of young people with learning disabilities in the work place.

So, for now – save the date … and watch this space! (Details below)

Further reading:

Capturing the Voices of Children in the Education Health and Care Plans: Are We There Yet?

About Cole Andrew:

As a member of #TeamADL, Cole leads on the SEND Careers Project.  His experience as a Special School Headteacher and work across more than three local authorities helps him coach new aspiring special school heads, as well as those more experienced.  Cole also has a keen interest in training Teaching & Transport Assistants.  As a parent of a child with Autism and a foster carer, Cole has a 360 insight into the system.  To find out more visit: https://www.anitadevi.com/team-adl.php

Save the date 9th March 2019