Parent Perspective: Freddie and me

By Richard Nurse, Dad of Freddie and Creator of Picturepath

How do we manage to navigate a typical day in our household? The answer is routines – lots of them. My son is 8 and is autistic. He was non-verbal till 2 ½ and went to school with only 1 to 2 word sentences. Before he could speak, we had some colossal meltdowns until a Speech Therapist one day gave us a tool which made all the difference. It was a PECS book! PECS stands for ‘Picture exchange communication system’.  It is exactly what it says on the tin – a method of communicating through the exchange of pictures. Instantly, the meltdowns eased significantly. My son knew what was coming and what to expect. He peeled off the “now” and “next” pictures and after a while he started saying phrases like “Biscuit please”.

As we moved onto longer sequences, it became important for him to know all the steps of a process. After one morning where we almost had a little boy getting undressed in the lounge, we realised that for us it was important to put more detail on to our timeline. The “go upstairs” symbol was born! Our revised morning routine (which we still use today using a software solution) has steps in it including “go upstairs” and “get dressed”.

Not every autistic child stims or acts like Rainman

Who else gets told “your child doesn’t look autistic”? We get that a lot. I want to scream “not every autistic child stims or acts like Rainman” but I just smile – people mean well. They see a happy child joining in with his peers. They do not realise that to have that lovely, calm, smiling boy requires immense planning. We spend a long-time building picture-based routines, so he knows exactly what to expect. I cannot praise routines enough. If we mess up and do not build them, even in situations where we think he does not need them, it can lead to tears and tantrums. During lockdown, I know every day is the same for him (yes, PE with Joe Wicks is the start of every day) but if I’ve not built a visual guide, he can became upset because in his mind he doesn’t know what’s coming up. You and I know that it is the same as yesterday, but he does not and he’s worried.

It is extremely easy to think “We don’t need that today” but my recommendation is – build the routine anyway. If you use a digital solution, then you do not have to worry about losing a symbol or having to laminate a whole sheet just for one picture. Take pictures of places or people to personalise the routine (anyone else need to differentiate between “big Asda” and “little Asda”?). Believe me it is so much better than not doing it and thinking “I should’ve built a timeline today”!

We’ve been introduced to many ways to make life easier but nothing has been more effective for us than using a visual timeline, whether it’s “now and next”, or a routine to explain an event, or a whole day timeline. Use it continually and this can help, often in times when you might think you do not need a timeline.

Anyway, have to go now. Apparently, I need to be doing some spiderman lunges and burpees…. Help …

Richard Nurse created Picturepath as a digital solution for daily routines.  After a year of research, it launched in 2016. Since then, Picturepath has been downloaded thousands of times by parents and carers and is being used in schools across the UK, making a real difference to the daily lives of children, parents and teachers. 

More info on Twitter: @mypicturepath

Employment, Learning, Parenting, Preparing for Adulthood, Social work

Reflections: Community Care Social Work Event

By Stephanie Lister

Once registered and inside the Business Design Centre in London, the somewhat subdued queue of social workers, managers and students were invited to attend any of the over thirty different legal sessions, seminars and interactive zones. These covered topics as varied as ‘Coroners Court Mock Inquest’, ‘Engaging Safely and Effectively with Perpetrators of Domestic Abuse’ and ‘Immigration Law and the Children Act: What are the Social Workers’ Responsibilities?’.  So much choice!  In this blog, I share insights from the four sessions I attended.

The first seminar was ‘Getting it Right in Transitions: Goals and Aspirations’ – a topic close to my heart and an area I worked in for over twelve years. I was pleased to see the focus was on the young person and what’s important to them, such as finding and keeping a job, things to do in their spare time, living independently and staying safe and healthy.  The discussions were grounded in the Care Act and adopted a strengths-based approach. Also covered was the need for joined up working with partners and supporting parents as their child moves into adulthood.  Associated positive risk needs to be juxtaposed with ongoing vulnerability.

 ‘Navigating the boundary between the Mental Health Act (1983) and the Mental Capacity Act (2005)’ was the title of my second seminar.  This was a legal learning session designed to broaden understanding of the scope of the two acts, the differences between them and how to decide which regime to follow in different scenarios. This was a relatively new topic for me, as I have limited experience working within the framework of the Mental Health Act, but some experience undertaking Mental Capacity Act assessments for young people over the age of sixteen. I found the topic both challenging and helpful.  It reminded me of a previous case where the young person, diagnosed with high functioning Autistic Spectrum Disorder had found it increasingly difficult to self-regulate.  This resulted in deteriorating mental health, increasing self-harm, isolation and risk to themselves and family. After much multidisciplinary debate regarding the needs and provision for this young person, a hospital place was found under the Mental Health Act.  They made good recovery and were able to return to supported living in a specialist educational setting. Having a clearer understanding of the Mental Health Act would have helped me advocate more directly in this case.

Stand up for what you believe in, even if you stand alone 

Suzy Kassem

Seminar three was a refresher entitled ‘NHS Continuing Healthcare and the Legal Limits of Local Authority Responsibility’. Continuing healthcare assessments were a regular part of my working life.  My role involved assisting and supporting young people and their parents/carers through the assessment process, balancing the tension between the Care Act 2014 sec 22(1) and the NHS Act, the various budget holders and the often-desperate needs of the family. This seminar highlighted again the need for clear understanding of what is a primary health need, how the characteristics of Intensity, Nature, Complexity and Unpredictability look across the domains of the assessment and how regional variations in assessment can lead to a ‘postcode lottery’ of funding being agreed. It raised the importance of accurate recording of evidence of risk, strengths and unmanaged needs within the framework of the domains outlined in the decision tool.


The final seminar of the day was one based in adult services, but which occurs in families I’ve worked with.  The focus was ‘Trauma-Informed Practice with Adults who Self-Neglect or Hoard.’ The speaker, herself a survivor of trauma resulting in a form of hoarding, gave an insight into the effect of trauma on the brain, the way life events are then experienced through that lens or trigger and its effect on attachment. We were encouraged to recall three objects that were of sentimental value to us.  We were then instructed to keep one, recycle one and throw one away. We then had to recognise the emotions and physical responses we felt.  This simple activity was a helpful insight into the distress experienced by people when the outward signs are addressed, but not the healing of the trauma. A question was raised about how would a person’s executive function affect the outcome of, for example, a Mental Capacity Act assessment? as often those affected can ‘talk the talk’ i.e. tell the assessor the steps needed to carry out tasks, but are unable to ‘walk the walk’ i.e. actually carry out those tasks.  It was suggested treatment pathways that can be helpful such talking therapies, Cognitive Behavioural Therapy (CBT) and Eye Movement Dual Task Therapy.

It was interesting to note that by the end of the day the attendees appeared more upbeat and re-energised and there was a definite buzz of enthusiasm. This was also something I noted in myself as although the day had been full on and exhausting, I felt a renewed sense of purpose and value.

Social work Seus

About Stephanie Lister

Stephanie has nineteen years’ experience as a Nursery Nurse working with children, who have special educational need and/or a disability (SEND).   With a desire to do more and advocate for individuals and families, Stephanie retrained in social work and subsequently dedicated twelve years to working in a local authority with a broad remit covering Children with Disabilities and Transitions into adulthood. Stephanie is a valued member of #TeamADL where she continues to advocate and find solutions in a social care context.

To find out more visit the #TeamADL website

#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


5 Top Parenting Tips for the Holidays

Anne Goldsmith (Parenting & Behaviour Specialist #TeamADL)

With the school holidays not far away, you might be thinking what will I do with my children during the holidays?  How do I keep them occupied?  How do I distract them from wanting to play on their XBOX or PlayStation all day and every day?  In this thought-piece, I share 5 top tips to extend your thinking and help plan a more productive leisure time.

It’s often easier to find activities to do with younger children, although I am sure you have realised, that this becomes more difficult as your children head towards their teenage years.  I have two teenagers myself – a 15 year old son and a 13 year old daughter.  When I do find things to do with them, I am mindful that their idea of fun differs from mine and my choices may not be something that interests them.

Top tip #1 Whatever you decide, ensure there is a balance.  Like meal nights, it’s about ensuring everyone has their choice considered, at some point. Planning together is great fun, and children often become quite creative in presenting the plan for the holiday period, knowing they have had a say in the planning and their favourite activity is included. Look online at activities and events on in your local area.

Obviously, there are places to go, such as the cinema, VR Rooms, trampoline parks, which are great and children often enjoy these too. Going for family walks and bike rides can be lots of fun and involves fresh air and exercise.  Again, taking this further could be stopping at the local park.  This was something I did quite a lot in the summer holidays with my teenagers.  We would go for a bike ride, stop at the park and then cycle onto somewhere local for breakfast/lunch and then cycle back home again.  This also makes the fact they want to play on electronic devices for a couple of hours more acceptable, as they have had some fresh air and exercise for the day. Baking with your children is another fun activity to do together.  It doesn’t cost a lot of money, it’s a great way to bond and of course you can make some yummy treats too.  This is one of my daughter’s favourite things to do with me during the holidays.  A top tip from my daughter, is to be flexible with the recipe and give your child the chance to improvise with a recipe, instead of you taking over!

Spend time talking to your child about their favourite XBOX/PlayStation game or their favourite group/music.  If you’re feeling brave, you could take it one step further and spend some time playing with your child on the PlayStation/XBOX or listening to your child’s music and sharing with them, your music or outfit from ‘back in the day.’

It’s important to let your guard down with your children and have some fun too 😉

Top tip #2 It’s a holiday from school, so whilst being active, it’s also important to make time to rest, just chill out and do their own thing.  Whatever that means for them.  This might be staying in their room, reading a book, having a lie in until lunch time, meeting up with their friends, watching TV and yes – I know – playing on their XBOX or PlayStation!  A tip from my 13 year old daughter here, is to leave them alone – unless the house is on fire!  This is their time to recharge their batteries and take time out from the routine.  The tail end of the holiday, it’s always good to start preparing them for structure, routine and early morning starts.

Top tip #3:  Invest in quality time for connection.  Spend some time with your children bonding and deepening relationships.  If you have more than one child, I would recommend giving each child some quality one to one time with you and/or your partner.  It doesn’t have to be for hours, or anything expensive or adventurous.  Sometimes just playing a game of cards together, board games, watching a movie (of everyone’s choice) with a favourite treat food or just popping to a local coffee shop for a catch up, is effective.  These ideas work for younger children and teenagers.  It shows them that you are willing to take time to stop and think about what they would like to do. I have these times with my own teenagers and they are ‘mobile free’ times for them and for me!

Top tip #4: If the holiday is followed by school assessments and your child needs to revise during the break, help them to find that balance and to be organised.  Give your child the chance to organise themselves too and try not to be too overbearing and ‘force’ them to revise.  A great technique to motivate children to complete their homework or revision, is to sit and do your own work alongside them.  They appreciate the company and feel happier doing it, as you are doing something too.

Top tip #5:  As well as activities and things to do, plan sit down meals with your children and your family.  It’s a great opportunity to reflect on the day and gauge how they’re feeling.  This is a great way to connect and re-connect with each other.  It’s often a time when your children are quite open, chatty and responsive.  You can learn so much about your children at these times.

I’d be interested to know how you build connections with your children during the holidays.  Do share your thoughts, ideas and experiences.

One final thought, no one wants to hear the constant moans of “I’m bored!” However, I believe it’s good for children to feel bored at times.  It encourages them to use their imagination and often results in them doing something creative, practical or active.

Have fun!

About Anne Goldsmith

As a member of #TeamADL, Anne, our Parenting and Behaviour Specialist is supporting and providing behaviour management guidance / training for children, young people and their families, as well as educators. To find out more visit: