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

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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

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: https://www.anitadevi.com/team-adl.php