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21 Years Living With Autism – Lessons I Have Learnt

                                                                                                                                ‘While we try to teach our children all about life, our children teach us what life is all about‘ ~ Angela Schwindt

My son, Tom, the inspiration for  TomTag visual supports, turned 21 years recently. It seems like only yesterday that he was a new born baby snuggled in my arms. Like any new mum it felt like the beginning of new things. A rainbow of hopes, dreams and possibilities spreading out before us. 

Autism cast a shadow on that rainbow.

But the rainbow was always there. It  just needed to be looked at from a new perspective.  With the understanding that hopes, dreams and possibilities mean different things to different people. 

Over the last 21 years Tom has taught me so much. Not  just about lorries,  swiss trains and football 😉 But, about the important qualities in life – patience, resilience, humility and determination.  That each of us has a right to be here, to be heard and to live life to its fullest potential.

To celebrate Tom turning 21, I’m sharing 21 lessons I’ve learnt from living with autism. I know what a rollercoaster it can be parenting an autistic child so I hope our experiences bring some positivity and hope to those of you who may be going through similar  experiences.  Please know that however hard it is now,  with time, things do change, the shadows lift and the rainbow reveals itself🌈

Clare ❤

Lesson 1: Let Go Of Expectations

Tom having fun with the gravel!

As a new mum, ‘What to Expect the First Year ‘ by Heidi Murkoff was my bible for the first 12 months of Tom’s life.

Like every new mum, every  month I proudly ticked off Tom’s achievements– sitting, crawling, first solid food. Then I almost burst with pride.  Aged 10 months, he pulled himself up on the sofa and walked across the room!

But when I took him to the playground, I noticed that Tom ignored the other children. He  wasn’t interested in playing on the slides and swings. Instead, he spent his ‘playtime’ picking up handfuls of the gravel and watching it fall between his fingers.

I was a bit confused by Tom’s reaction and obsession with the gravel. I felt  sad for him that he was missing out. Over time I found the joy at seeing him engrossed in HIS form of play. It was an early lesson in letting go of MY expectations. Now I understand that playtime was always going to be a sensory experience for Tom. He always wanted to touch things and liked to know how things tasted or smelt. Even railings, but that’s another story!

I didn’t know it then but  letting go of expectations was to become my mantra.

 

Lesson 2: Live In The Moment 

Tom memorised in his water play

From an early age Tom was fascinated with water. As a toddler he loved to pour water into and out of small cups  or jugs for hours on end.

The joy of watching him completely absorbed in his water play, his curiosity for the  waters feel, look and movement taught me to live in the moment.

I realise now it was a sensory need for him. The  visual stimulation from the patterns made when the water dripped and poured into various containers made him feel happy and calm. 

 

 

 

 

Lesson 3: The World Is Loud And Bright

Tom having some quiet time with his favourite teddy

When Tom was a toddler, I often thought he had superhuman powers of hearing and seeing. He could hear a dog bark from miles away, get agitated  during loud conversations and react immediately to bright lights.

Yet…he didn’t seem to hear me calling his name.  These powers, far from helping him, seemed to cause him acute distress. He covered his ears and eyes with his hands, hid under tables and tried to run away. Anything to get from the noise and brightness. If he couldn’t get away, he would have a meltdown. 

I was confused and worried by his reactions.  I instinctively knew what would help him. He  needed his favourite Tellytubby, a cuddle and a quiet place to make him feel safe.

Since having Tom I’ve realised how loud, bright and intense the world can be. I know now that he sees, feels and hears things that I’d never paid much attention to much more intensely. This sensory overload was the reason for his meltdowns. Heck, maybe that’s why he walked at such an early age …so he could escape!

I’m now more aware of the sights and sounds around us. I’ve even noticed that the intensity of fluorescent lights in offices and shops often affects me .  During these moments of sensory overload I need to find a quiet place and take time to collect myself.

Lesson 4: Silence Can Speak Volumes

Reunited with Tom after retuning from hospital

When I came home from hospital after giving birth to Toms sister I expected a grand home coming. I was looking forward to an excited toddler giggling and rushing towards me arms outstretched, impatient for a cuddle.

Instead I was greeted with a silent hug . A seemingly underwhelming welcome.  I knew, however, from the way Tom hugged me, so tightly. The way he looked at me that he had missed me, that he loved me.

This was the start of my understanding that we didn’t need words to communicate. It was a good thing as he didn’t start to talk until he was nearly 5.

We’ve had a humongous amount of hugs since then!

 

 

Lesson 5: Never Take A Milestone For Granted

Biscuit time- Tom’s favourite part of the day!

Tom was nonverbal until almost 5 years old. 

When I was told by doctors that it was highly likely Tom may never speak. I was devastated. I could feel his frustration at not being able to tell us what he wanted. We had to find some way he could communicate with us.

Tom used to take me by the arm and pull me towards what ever he wanted.  For example, the fridge if he wanted a drink or the front door if he wanted to go outside.  We had to find a better way.

 We started using objects and picture cards. These gave him a way of showing us what he needed or wanted. He’d give me the drink card if he wanted a drink or show me the coat card if he wanted to go outside. Guess which card was always top of the pile!? The biscuit card!

It’s not the milestone we were expecting but we didn’t take his progress for granted.

 

 

Lesson 6: Celebrate Every Unique Moment

Tom playing with his sister Hannah

The arrival of Tom’s sister Hannah marked the start of Tom’s shut down period.

Most of us sadly, are all too familiar with a lockdown but Tom was ahead of the curve! Back in 2002, he went into his own self-imposed lockdown. Showing zero curiosity about his new baby sister, Hannah, other children, or visitors. He screamed when she cried. There was only one thing he wanted to do all day, every day. Lie on the floor and move a piece of a toy wooden train track up and down in front of his face.

It was heart-breaking to watch. I felt intensely sad. Tom was missing out on all the fun toddler things I had planned to do with him. I was also fearful. Worried  that Tom would forever resent his little sister.

One afternoon, without warning,  Tom abandoned his beloved train track (seen in the photo at the edge of the rug). He spontaneously started  to play with Hannah. Tears of joy streamed down my face. I knew that this was a unique moment to be celebrated.

From this small precious moment, the most incredible bond between the two of them has grown and developed over the years.

Lesson 7: Life Goes On

Some of the cards for Tom’s ABA programme

Receiving Tom’s diagnosis of autism just before he turned 4 came as a mixture of relief and sadness.

Relief as for almost 2 years I’d had a nagging feeling that something wasn’t quite right. Tom’s lack of speech, repetitive play and extreme reactions to any changes in his routine now made sense . However, I felt an equal measure of sadness. The future I imagined had been taken away. I felt isolated, overwhelmed, and missed having my family and friends on the doorstep.

But life goes on. I quickly became the CEO of Tom, Plc!

Soon after the diagnosis, we were offered a place on a home-based therapy programme – 40 hours a week of applied behavioural analysis therapy (ABA). A  2-year programme (the first of its kind in Switzerland) which took over my life. My weeks became a flurry of appointments, assessments, and the day-to-day management of the therapy sessions. Not to mention all the resources, the hundreds of picture cards I made to support the programme. 

I hit the ground running! Working as a therapist on the ABA team gave me a sense of purpose. It also  allowed me to adapt Tom’s  programme so it reflected the things that mattered to him. More TBA than ABA!

Lesson 8: The Power Of A Hug

A reassuring hug during a busy family party

Three months into Tom’s  ABA programme we flew to the UK to attend my mums 60th birthday party. A  gathering of over 70 family and friends in a local pub.

It would have been easy to opt out of going. My mum knew how challenging it was for Tom to be out of routine.  She would have understood if we had chosen to stay at home. But seeing family was important . My mum had survived breast cancer, so I really wanted to mark this landmark birthday with her.

The journey didn’t worry me as much as the party. We had made frequent visits to the UK since Tom was a baby. We  often joked he had been on a plane more times than a train or bus. My travelling preparation  was therefore honed to a tee particularly my ‘survival bag’. A handy assortment of books, toys and treats which went on all our travels. It could be deployed to help distract and calm Tom in situations he found stressful or overwhelming.

But,  it was often a simple hug,  which had the real power to calm, reassure and comfort him.

 

Lesson 9: The Importance of Perseverance

Tom working on his ‘l’ sounds in his speech therapy session

Tom made huge progress on his ABA programme. He started to speak and repeat phrases.

We were so excited to hear his voice.  When he randomly said ‘Nanny’s greenhouse’  we flew back to the UK as soon as we could. Delighted that he  could see Nanny and her greenhouse!

I’d have to wait a bit longer to hear him say ‘I love you mummy’. Tom had significant speech and language difficulties. He was unable to express his ideas and thoughts in complete sentences and had trouble pronouncing certain sounds. I admit I found the way he said ‘wamp’ for lamp charming.  However, other people found it difficult to understand him.

He started regular speech and language therapy which included work on his ‘l’ sounds both in the therapy session and lots of practice at home.

With hard work and perseverance, he finally mastered that tricky ‘l’ sound.

Lesson 10: The World Is a Beautiful Place

Tom in awe and wonder during a forest hike

Tom loves patterns. He is fascinated by lines, shapes and colours 〰🔴🔻🌈

When he was younger, he would often stop and stare at the shadows cast by railings. Fascinated by the shapes made by the lines. He’d be mesmerised looking at a crack in the pavement. Captivated by the glow of the setting sun and transfixed by a falling leaf, as shown in this photograph.

 Tom  taught me to take notice of all the little things that make our world so beautiful 🌍

 

 

 

 

Lesson 11: The Power of Sharing

 

Tom having fun at Pre-School

Like every mum dropping their child off for their first day of school, I felt the usual mix of emotions . Proud yet worried about how Tom would settle in.  Twelve   months earlier it seemed inconceivable that we would find anywhere suitable for Tom. It had been quite a journey to get him to this point.  Leaving him in the classroom was so emotional and overwhelming. I had to dash to the car for a cry. 

 I knew that it would not be possible for Tom to attend school fulltime. His communication difficulties, limited attention span and sensory issues. made full time attendance too challenging.  I didn’t want to set him up for failure. For him to feel defeated by education at the very offset.

 I wanted Tom to have the opportunity to learn alongside his peers. To  have the shared cultural experience of education. I wanted a flexible option – sharing his education between home and school.

We discounted local primary and special schools because they were German speaking. Tom was just learning to communicate in English, so this was a no-no.  The international school was our only option. Would they be prepared to share Tom’s education and allow him to have a mix of school and home-based learning?

We were lucky. They did.

Aged 4,  and a year older than his peers, Tom started at the Zurich International Preschool for 2 morning per week with an assistant. His ‘at home’ time was spent following his ABA program and with me. It gave him time to sort out some of things he found confusing at school and space to recharge.

This collage of pictures taken during Tom’s Preschool year shows just how happy he was at school.   Tom was able to enjoy a shared education for the next six years . We are forever grateful to the staff at ZIS  for their patience, respect and commitment to Tom’s flexi-schooling. 

Lesson 12: Making Sense of Senses

Tom in hospital waiting for an x-ray

En route to Cornwall for a summer holiday, Tom broke his arm. He fell off a climbing frame at a service station.

We didn’t realise he’d broken his arm – he didn’t scream, shout or make any fuss. He simply picked himself up and headed back to the car. It was only when we were back on the road that I noticed him clutching his elbow. His face drawn, ashen and etched with pain. We veered of the motorway to find the nearest A& E. This photograph was taken as we waited to be seen at the hospital. 

 The X-rays showed that it was nasty break. I felt terrible. He must have been in the most horrendous pain and we had been unaware of his suffering.

It was just so confusing. Haircuts, having his toenails cut, washing his face caused him to scream to high heavens.  Breaking his arm – not even a whimper.

We already knew that Tom had difficulties with his language and communication. This this couldn’t explain the lack of any emotion to his injury. Even without words, tears would have at least alerted us to his pain. I realised then that there must be major issues with how he was interpreting sensory information. This was having an impact on how he was behaving and responding. It just seemed so unfair for one little boy to have to deal with yet another set of difficulties. I felt defeated…

It was time for an occupational therapist to join team Tom!

Amongst other sensory issues, OT assessments showed that Tom was both overly and under sensitive to touch. His  behaviour and certain reactions started to make sense.Tom  had always disliked messy play but would be unaware of his hands and face being dirty. He loved being hugged by me but would recoil in horror if anyone else tried to touch him. He touched and mouthed objects but was fussy with his food and avoided certain textures.

So, aged 5, Tom started weekly sessions of OT at school and a programme of activities and exercises at home.  With patience, commitment, and hard work, Tom has steadily improved his ability to interpret sensory information from his body and the environment. Haircuts and nail cutting are no longer an issue though he still has a relatively high pain threshold and tolerance for being cold.

This experience with Tom also taught me the importance of providing a nonverbal way to communicate aches, pain (including broken limbs!) and sensory overload to others in a simple and effective way. That’s why we’re proud to include a ‘I can do it manage me feelings ‘ kit in the TomTag range. 

Lesson 13: Less Is More

As part of his occupational therapy programme Tom had a series of daily activities to practice at home. There were movement exercises to encourage the right and left side of his brain to talk better to each other. This interhemispheric integration would  improve how he could react to his surroundings. There were also lots of fine motor activities. Tasks to help improve the small muscles in his hands and wrists to help him with skills like, grasping, dressing ( zips & shoelaces) writing and drawing.

I was willing to work and put in the time with Tom but sometimes he wasn’t interested in the activities. On days like these it was easy to feel disheartened and resentful.

Short of bribing him with his favourite biscuits (!) I learnt that the secret to getting him to do his OT exercises regularly was to do a little often. It also helped to spread them out during the day and turn them into a game. It was also important not to take things personally. If Tom was stressed or agitated during the activities then we would leave it and start again the next day.

Lesson 14: Joyful Collaboration

 Tom’s ABA programme was a success. Now he could communicate what he wanted, concentrate much better and was behaving appropriately at school. But life isn’t just about getting your needs met and fitting in. It’s about connection and friendship. The joyful experience of sharing our ideas and feelings with another person.

How could we help Tom develop meaningful conversation, cooperation, flexible thinking and empathy. All  the skills he needed to make and keep a friend?

I discovered Relationship Development Intervention (RDI) by chance in a magazine article. This programme based on Developmental Psychology was the perfect fit. It’s  guiding principle is Joyful Collaboration. The  idea that joy comes not from a toy or game but from sharing an experience.

Tom moved from ABA onto RDI at the same time as receiving OT and SLT (got to love an acronym or two!). It was a full-time job coordinating all these programmes and collaborating (joyfully!) with various professionals.

For RDI, we practised different activities at home working on joint attention, collaboration, teamwork, and communication.

In this short video clip, Tom (aged 8) and I are sharing the job of watering flowers. We take turns with the watering can with the aim of helping Tom practise being a ‘team member’. Although he was reluctant to water the flowers, he accepted my instructions . I loved how the ‘job’ developed into a fun chasing game. A true Joyful Collaboration!

Lesson 15: Planning Is Key

Tom, happy and relaxed ready for his first day at school

When Tom was 10 years old, we relocated back to the UK from Switzerland.

For any family moving home can be stressful, moving to a new country -double the stress! I was worried about how Tom would manage this major change in his life.

 It was potentially a huge challenge for him. He craved familiarity, had built up excellent relationships with his various therapists and was thriving under his bespoke educational arrangement. How would he cope with a new home, attending school for a full day, wearing a school uniform for the first time?  

Tom coped.

The relocation went relatively smoothly because we planned and prepared for it. Creating  a picture book of the new house and school was a great help .We  focused on the positive aspects of the move such as being able to see more of his grandparents and cousins . We  encouraged him to share any worries he had about the move. He worked on a story about his mixed feelings about leaving Switzerland with an amazing counsellor at the international school.

Critically, we took his routines with us -his morning, bedtime, get-ready for school routines.  

He settled in remarkably well at the local mainstream village primary school. There was some regression in his language and behaviour. But, with the support of a sensitive and dedicated teacher and assistant Tom soon found his feet and voice.

I quickly formed a new Team Tom with a new speech and language therapist and occupational therapist.

Planning was therefore the key to making the relocation a success.  

Lesson 16:  The Importance of Special Interests

All things Eddie Stobart!

It was one of my biggest worries when we relocated back to the UK from Switzerland. How would Tom manage without his special interest. -Swiss transport.  He loved swiss trains . His favourite part of any journey was spotting lorries  from the Swiss firm Galliker.

 Fortunately, I had a secret weapon. Eddie Stobart – the iconic green delivery lorries that criss- cross the UK 24 hours a day.

I cunningly introduced Tom to Eddies and signed us up to the Eddie Stobart Spotters Club. We live near to the M62 – prime Eddie Stobart spotting territory! We could go out to eat as a local pub overlooked the motorway. The staff got to know us . They  always gave us a window seat where Tom would quietly sit, happily keeping a tally of all the lorries he spotted on the nearby motorway (using his Eddie Stobart writing pad and pencil!)

 Eddie Stobart lorries were a source of comfort and enjoyment for Tom. For us, they became a source of inspiration.  Birthday cakes, biscuits, and presents also assumed Eddie status.

More importantly, Eddie Stobart became a means of encouraging him to engage in his learning.  Art projects, tricky writing tasks and maths problem could all be given the Eddie treatment! Tom approached any task that had a hint of Eddie, with enthusiasm, happiness and a willingness to learn.

Tom’s love of Eddies lasted 3 years. The most memorable event was a tour of an Eddie Stobart depot and a chance to sit behind the wheel. I don’t know who was more excited – Tom or I!

Lesson 17: Fussy Eating Habits Can Change Over Time

Tom, aged 12 and his signature dish- cheese-less pizza!

When Tom was younger, he was a picky eater.

I knew that Tom needed a balanced diet – a variety of fresh, healthy food for good health and development. For the first few years, I felt guilty and responsible that he would only eat a limited amount of food.

 Tom’s diagnosis of autism and the results of his OT assessment helped me understand his fussy eating habits.

He needed familiarity and routine. Trying new experiences including eating new foods were therefore difficult. It was obvious now why he was preoccupied with certain foods. They  provided him with reassuring predictability. 

 Tom craved soft food like ice cream.  He liked the feeling of coldness in his mouth.  Bland foods like pasta, bread and chips  were his preferred choice.  He disliked meat  because he found chewing difficult. Though he did make an exception for chicken nuggets! He disliked tomatoes but liked ketchup or tomato sauce because he didn’t like the texture of tomatoes . His favourite meal was pizza but without any topping other than tomato sauce.

Sharing regular meals and snacks and introducing new foods gradually helped Tom get comfortable with new foods. However, the biggest change came when he was 15. He started a Jamie Oliver cooking course at school. By preparing and cooking food with the encouragement from two talented teachers, Tom’s food preferences changed. He was more willing to try different foods.

This Christmas aged 20, Tom enthusiastically dipped carrot sticks and chunks of olive bread into his baked camembert. His food choices have come a long way since this photograph was taken! 

Lesson 18: Detective Work

Tom happy and relaxed in the mountains

When Tom was younger it was difficult for me to know what his feelings meant. It was also difficult for him to pick up clues about how I was feeling.

Although Tom feels the same thing as everyone else, the nuances can be blurred. His feelings are much more intense and can be harder to distinguish. Feeling sadness could lead to him crying but also to laugh or shout for no good reason. He has difficulty interpreting gestures and expressions – often thinking I’m angry when I’m not!

With his SLT, we  created a book of feelings to help Tom understand his own and other people’s feelings. We used this book to teach him the words he needed to express and recognise different feelings.

This work made me look at my own feelings and emotions.  I had to understand what feelings mean to me before explaining them to Tom. We were both developing our feelings detective skills!

Helping him to identify the size of his feelings and relate this to his physical reaction was also important. Often,  a little feeling could grow into a gigantic feeling. Tom could spend hours, days, even weeks catastrophising.  Churning over thoughts and feelings in his mind like a sticky record.

Teaching and modelling simple self-help strategies like self-talk (phrases Tom could say to himself when he was feeling worried) helped. At secondary school he used  a sensory levels chart (a visual chart to recognise his sensory stressors)  to help him  to manage his feelings.

Our experience led to the development of the TomTag Feelings Notebook. A resource for other families to use to support their feelings and emotions detective work.

That’s a thumbs up from Tom!

Lesson 19: Look At Ability Not Disability

Tom with his award for effort and all ready for Prom

Like any parent I was anxious about Tom’s move to secondary school.  I had managed to keep him a year behind cohort, so he started at age 12 . However he was both academically and socially behind his peers and it felt like the gap between them was widening. Like a train picking up speed out of the station and you can’t get on it  no matter how fast you run.

It was unrealistic to expect any exam success – unless there was an exam in Swiss train timetables and routes! Tom gets anxious even at the mention of the word test.  Furthermore,  his language difficulties meant that he struggled to understand complex sentences, instructions and specific vocabulary.

Despite the anxieties and challenges he faced, Tom always worked hard and tried his best . He was the only young person at his school to consistently achieve straight A grades for attitude across all subjects. This exemplary attitude to learning was motivated by his need to please his teachers and not disappoint or upset anyone. Though,  he did enjoy many of his lessons. I felt so proud when he was regularly awarded prizes for effort at school prize giving.

Tom left school with few formal qualifications, but he left smiling, confident and with the motivation to continue learning. He even enjoyed Prom!

 

Lesson 20: Say What You Mean

Tom at home in the Etihad stadium

One of the biggest challenges for Tom due to his language difficulties is making sense of what people are saying.

When Tom’s grandad suggesting taking him for a spin in the car Tom looked horrified!

Before I had Tom, I didn’t think about the extent to which we play games and  hide behind words.  How often we use sayings like ‘Pull your socks up’, ‘we’ve run out of milk ‘,’Get a move on’ . Many of which are confusing for Tom because he takes what is said literally.

 When he was younger, I learnt to tell him exactly what I wanted him to do using as fewer words as possible. I helped him to learn how to look out for expressions on faces and realise the importance of how expressions are more important than the words themselves by emphasising my facial expressions and using exaggerated gestures . Some days I felt like a CBeebies presenter in full flow!

Tom can still become confused by words with similar or related meaning. Encouraging him to say when he hasn’t understood something and talking about some of the saying we use regularly and what they actually mean helps. His love of football is helping him experience playful teasing in a light heated way.  Some good old footy banter with people he trusts. Thankfully his team are doing well so he can banter from a position of strength!

Lesson 21: It takes a village.

Photo collage of memories

After 21 years living with autism, I have learnt that it really does take a village to raise a child.

My village is larger than most. My  family, friends, the dedicated therapists, teachers, teaching assistants and personal trainer we’ve been privileged to work with over the years . Plus, the many people we’ve met who have shown us the character of their humanity.  The hairdressers, barbers, dentists, shops assistants, waiters  who when faced with difference have responded with patience, empathy and decency.

Every victory we experience with Tom whether it’s trying a new food,  meeting new people or dealing with a change of plan belongs to us all.

Tom has taught me that it’s okay to ask for help. He’s taught me that just like any other child he needed me and our village to believe in him. His potential to learn, grow and thrive alongside his peers and community.

 

 

Thank you, Tom, for these lessons in what really matters.  I know you will continue to face the next 21 years with courage, determination and the enduring support of your village.

I’d love to know in the comments below what lessons you have learnt from your children.

                                                                                                                                          Clare ❤

Resources

 

  • Back-to-School Self-Talk Prompt Sheet

  • cover image feelings notebook extra stickers

    Extra sticker sheets for Feelings Notebook

  • Feelings & Emotions Sticker Pack

  • Feelings Bundle

  • Feelings Tag-O-Meter

  • I Can Do It Manage My Feelings Kit

  • I Can Do It Share How I Feel Mini Kit

  • cover image product feelings notebook

    My TomTag Feelings Notebook

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Your TomTag guide to an autism-tastic Christmas

green square background with text "Your TomTag guide to an autism-tastic Christmas

Christmas. Love it or hate it, it’s coming our way again – sooner than you think!

Because we know that this can be such a difficult, fraught and stressful time of year for families like ours, we’re sharing our best Tom Tag tips for an autism-tastic Christmas. 

Follow these tips of planning, preparation and patience to get ready for an autism-friendly Christmas that’s just right for you and your family.

PART 1: Planning

#1: Project Christmas: Decide what’s the best way to ‘do’ Christmas for YOU and YOUR family

We love this idea from the Gina Davies Autism Centre. Grab a cuppa, a notebook and pen and start planning. Think about the whole upcoming Christmas period, not just the day itself. Reflecting on what was stressful last Christmas is a good starting point.

  • ✍Make a list with four columns headed up Achievable, Desirable, High Risk, Impossible!
  • 🤔Think about what is planned or expected over Christmas and place each activity under one of the four columns.
  • 🗞Keep your plan to hand and add to it as necessary.
  • 👏Don’t aim for 100% – if you can manage most of the achievable, one or two things in the desirable column and manage to come through everything in the risky column be proud of yourself – you’ve helped your family enjoy the bits of Christmas that work for them.

#2: Make a personalised ‘All about Christmas’ visual guide to show all the different things you might find or do at this time of year.

For example, a photo collage or Christmas scrapbook showing Christmas objects, Christmas food and activities that only happen at Christmas e.g. meeting Father Christmas or pulling Christmas crackers. You could also include pictures of your family celebrating Christmas.

Children with autism tend to forget social information so a permanent visual guide is a great way to remind them what Christmas looks like.

#3: Talk to your child’s school or support team so you know what different things they might be doing and when.

Ask them if they have a copy of this excellent autism advent calendar for schools from the National Autistic Society. If not, print a copy off for them to use to help your child manage during the Christmas period at school.

Have a meeting with your child’s teacher to plan together how you can help your child cope with the activities coming up. Keep communication going throughout the Christmas period with a ‘Home- School’ book such as the lovely one available from That Beautiful Mind.

#4: Take time to sit down with your child and talk through anything they might be finding confusing or unsettling about Christmastime and all its festivities.
It’s often the little things we don’t even notice that can seem so huge to them.

Look back at your Christmas plan (see Planning tip #2) and for each planned activity or event, make a two-column list headed ‘Concerns and Solutions’. Ask your child what concerns they may have and then together think about and write down a solution.

For example…

  • 🏘 a visit to family or friends
  • 😟 worry about what they will drink
  • 👍agree to take their favourite drink or ask the hosts whether they have it.

This think-say-do approach is a great way for dealing with uncertainties that occur throughout the year not just at Christmastime.

#5: Make realistic plans for your shopping needs.

Choose quieter times of day, take a list, use a babysitter, bring snacks, shop online.

Christmas shopping with a child who has autism is definitely a high-risk activity! Sounds, lights and the hustle and bustle of crowds – it’s easy to see why meltdowns occur and shopping trips are abandoned. There’s no need to be superhuman. Keep it simple, practical and do-able!

#6: Talk about social rules and different expectations that people might have around Christmastime.

Christmas is usually a time of increased social contact and festive events with family and friends. Use a visual schedule to show what’s going to happen before any visitors come to the house or when going to parties, visiting family and friends. Roleplay and practise greeting visitors appropriately and saying please and thank you.

#7: If your child has little or no interest in typical toys, make a list of alternative gift ideas that you can suggest to relatives and friends when they ask what presents they can buy.

Sensory Direct have a wide range of sensory toys and equipment for autistic children. You could also suggest something small and inexpensive and ask that any money left over is put towards an activity that your child enjoys or time with a favourite babysitter.

#8: Make sure visual schedules are updated to show any changes to routine or special festive events.

Using a visual schedule, like TomTag, at home or school is a great way to make sure that children with autism (like ours) know about and can prepare themselves for anything different that’s going to happen.

In our experience, front-loading any changes to routine early on means that they can be coped with. Later changes to routine (however small) can cause distress and anxiety. Check out our I know what to expect at Christmas and birthdays kit for ideas.

#9: Let your children help to choose and put up the decorations in and around your home.

Christmas decorations can be disruptive to children with autism. Consider decorating gradually over a few days so they are not overwhelmed immediately. If inside decorations are too much then decorate outside the house only.

Twinkly, shiny, glittery Christmas lights whilst enjoyable to look at can lead to sensory overload. Consider limiting the number on display and choose lights that have different settings you can control.

PART 2: Preparation

#1: Keep sensory armour to hand for trips to the shop, parties and other festive events where sensory experiences can easily become overloads

Sensory armour could include:

  • 🎧 headphones to cut out some of the noise and sound
  • 🧢 a cap to help shut out some of the flashing lights or people
  • 🕶 dark glasses to reduce the light intensity
  • 🧸 a favourite comforter for reassurance
  • 🍪 small portions of snacks to help when things get tricky

#2: Prepare for visitors and visits from family and friends by talking to your child about who they are going to see and how to greet them

A personalised visual checklist is a great way to show your child who all the family members are that they may be meeting and what an appropriate social contact might be for each group. You can find appropriate symbols in our Christmas & Birthdays sticker pack (links below).

#3: Leave some areas of the house undecorated so there’s always a quiet place for your child to retreat to if they need it

Flashing lights, glittery objects and jingling bells all around the house are natural triggers for sensory overload. Having a Christmas – free zone to escape to can help bring stress levels caused by sensory overload down to more manageable levels.

#4: Discuss the escape plans that it’s ok for your child to use if everything gets too much for them

Having a calm and quiet place to escape the noise and bustle of Christmas is crucial. Agree with your child how they will let you know that they need to use it. For us, Tom showing me a simple red card when he’d had enough worked well.

#5: Think and talk about the extra social demands that might trigger anxieties or sensory problems

Spending time with family and friends, the expectation to be ‘happy’ and join in can be stressful for all of us – particularly for children with autism.

Use a visual schedule to explain what is going to happen and try to avoid social visits on consecutive days to allow for some downtime.

#6: Advent calendars are a great way to prepare for and understand the count down to Christmas

We love this idea from The Autism Page for a Christmas Book Advent Calendar. It combines the excitement of unwrapping a new Christmas book each day with the benefit of using the books to build up an understanding of Christmas.

#7: Be prepared that your child might not be able to sit at the table for as long as you would like (or maybe not at all). Warn your host if you are not having Christmas dinner at home.

It can be stressful to have your child’s behaviour ‘on display’ to family and friends at shared meals. Be practical, realistic and upfront about it. If your child only sits at the table for say three minutes usually then Christmas day is unlikely to be any different. Take turns to supervise them or provide them with something to keep them occupied.

Keep working on mealtime skills at home and maybe next year will be different!

#8: For children who won’t eat a traditional Christmas dinner or the main meal you’re serving, prepare and freeze their meals in advance to reduce workload on the day

Just don’t forget to get them back out of the freezer in time! 

#9: Consider your child’s sensory needs when wrapping up presents. There’s lots of great alternatives to traditional Christmas paper such as foil or fabric.

The choice of alternatives will depend on whether the sensory issues relate to over or under sensitivities. Aluminium kitchen foil is brilliant for quickly wrapping all sorts of odd shapes and sizes as well as being shiny and noisy if your child likes that kind of sensory input. For something more gentle, calming and simple to open, try fabric tied with a ribbon where just a quick pull will reveal the gift. The bonus is that these options are eco-friendly too.

#10: If toys need assembling or batteries putting in before they can be used, do this before wrapping them up so that they can be played with straight away on Christmas day

It’s always worth checking inside boxes and packaging even if you’re not expecting there to be any assembly required as those pesky ties and tape seem to get everywhere!

PART 3: Patience

#1 In the build up to Christmas, remember to exercise some self care so that you can manage your energy levels and remain focused on what you and your child can realistically achieve

Play some relaxing music, burn some scented candles, take a relaxing hot bath to relax. Practise breathing!

#2 Take the time to read social stories with your child about what to expect at Christmas, including meeting with Santa.

Social stories are particularly helpful for activities that only happen at Christmas. You can make your own or check out the FREE printable Christmas social story about meeting Santa on the wonderful parenting blog And Next Comes L – Hyperlexia & Autism Resources

#3 Christmas is a time when sensory issues are greater than ever. To help prevent sensory sensitivities becoming overloads, allow your child to have some control over these experiences.

Where possible let your child have direct control of their sensory experience. For example, hand them control of buttons for the lights (if appropriate) or provide sensory defences like ear defenders or sunglasses.

#4 Many children with autism don’t like surprises so it might help not to wrap presents up.

You could also just tell them what’s inside or use clear cellophane or plain paper for wrapping. If your child finds wrapping paper highly confusing, e.g. thinks that pictures on the paper show what’s inside, then using plain wrapping paper with a clear picture of the contents stuck on the outside will help.

#5 If your child has dietary restrictions, don’t despair. Accept where your chid is now with their food and be patient.

Preferences change so it might not be the same next year!

If you are eating with other people at their house and your child won’t eat any of the food or insists on a particular plate, cup, spoon etc. provide these things so your child can join the party briefly and tell the hosts in advance.

#6 Get some Christmas helpers! Be patient with yourself and ask for help with preparations from family and friends.

Encouraging the whole family to get involved makes everyone feel included and part of the Christmas build-up. Don’t feel like you have to power through on your own.

#7 Buy or make your child’s Christmas costume or party outfit early and let them wear it around the house for short periods of time to help them become comfortable with how it feels.

Costumes and new clothes can be challenging for children with sensory sensitivities. Encouraging them to wear these around the house helps them become more tolerant of the different fabrics against their skin.

#8 Playfully and patiently practise Christmas traditions such as receiving and unwrapping presents and pulling crackers so that your child knows what to expect and can join in.

Play wrapping games by wrapping up items so your child gets used to opening the paper and finding something inside. Buy some cheap crackers and show your child how to pull them and shout ‘bang’ so the noise doesn’t come as a surprise. Practise wearing hats and reading jokes.

#9 Some children may be overwhelmed by a large number of presents all at once.

It’s natural to want to spoil them but be patient and try introducing gifts one at a time over the day or over several days. Alternatively, adopt an advent style approach and bring out a small gift each day on the run-up to Christmas day.

#10 Have the Christmas that suits your family as it is now. Forget about the perfect day, embrace the imperfections and enjoy your special moments

Remember that this is your Christmas too. Try and relax and enjoy the bits that work well. Recognise that some things are too hard at the moment but with patience and practise they may well be achievable next year.

Merry Christmas from your TomTag team!

Useful resources:

  • Christmas & Birthdays Sticker Pack

  • Christmas Survival Guide

  • I Know What To Expect At Christmas & Birthdays Kit

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Surviving Christmas with help from TomTag

Christmas is a magical and exciting time but for many children with autism and other SEN, the festive period can be anything but wonderful.

Changes in routine, a house pulsating with flashing Christmas lights and a steady stream of visitors can be too overwhelming and lead to sensory overload, anxiety, distress and confusion.
Making adjustments that help your child cope better at this time of the year will hopefully allow them and all the family to have a more enjoyable and relaxing experience.
It’s also a good opportunity to work on important social skills that can be transferred to other situations at different times of the year as well.

my daily routineJust another day

Keeping to the same familiar routines as much as possible, even on Christmas Day, can be key to helping things run more smoothly. There are no rules to say things have to be done a certain way so do whatever suits your family best.

It’s sometimes not possible to avoid some disturbance or change to the regular schedule at this time of year. Children who struggle with changes to routine can find this very unsettling. If they use a visual schedule at home or school, this is a great way to make sure they know about (and can prepare themselves for) anything different that’s going to happen.

If different or unusual foods are likely to be an issue, think about preparing and freezing your child’s favourite meal ahead of the big day so that it’s easy to serve alongside everyone else’s dinner and gives you one thing less to worry about.

decorations and christmas symbolsDecorations

Flashing lights, glittery objects and jingling bells all around the house are natural triggers for sensory overload. Let your child help to choose the decorations you buy and put up and consider decorating gradually over a few days so they are not overwhelmed immediately. Make sure to leave some areas of the house undecorated so there’s always somewhere for the child to retreat if needed.

Be aware of sensory triggers such as balloons, Christmas crackers, party poppers, festive music – consider using headphones or ear defenders at parties, carol concerts or similar events if sudden or loud noises are disturbing.  

Use an “All about Christmas” symbol list or simple social story to support a conversation with your child to familiarise them with all the different things they can expect to find at Christmas time.

Social expectations

family visits tagsChristmas is usually a time of increased social contact and festive events with family and friends. Use a visual schedule to show what’s going to happen before any visitors come to the house or when you’re going to parties, visiting family and friends, church services, etc.

Maybe even keep a separate tag as a checklist to show all the family members they may be meeting and what an appropriate social contact might be for each group (eg. hugs are ok for family, hand shake for friends, etc.).

There’ll be lots of opportunities to teach social skills such as learning to greet visitors appropriately and saying please and thank you. Include relevant symbols in your visit schedule list or use another tag that you keep handy for a discreet reminder of social behaviour rules.

Presents

Many children with autism don’t particularly like surprises and aren’t good at faking delight if they get an unwanted gift. Some may prefer to have their presents left unwrapped or, if they do like the unwrapping part, they might want you to tell them what’s inside first.

They may also be overwhelmed by a large number of presents in one go. Try introducing them one at a time over the day (or several days) or adopt an advent calendar-style approach, bringing out a small gift each day in the run up to Christmas.

Don’t forget to put batteries in toys in advance so that they can be played with straight away!

Relax!

Above all, remember that this is your Christmas as well. Get as much support from family and friends as possible and share out the workload wherever you can. Get children involved by giving them jobs to do which will keep them occupied and give them something to focus on.

We used the kit I know what to expect at Christmas & birthdays for the examples here. We know it can be a particularly taxing and stressful time of year for our loved ones with extra sensory and emotional needs, so there’s also an expanded version of the basic kit available which includes additional tags and blank buttons plus a Feelings & Emotions sticker pack. We call this our Christmas survival kit

This guide is available as a free downloaded using the link below.

  • Christmas & Birthdays Sticker Pack

  • Christmas Survival Guide

  • I Know What To Expect At Christmas & Birthdays Kit

 

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TomTag Feelings tag-o-meter

The TomTag feelings tag-o-meter is a visual feelings thermometer that can be used to support the development of all the skills required for good emotional intelligence.

It can help children to understand and communicate their feelings. By linking with a visual reminder of appropriate actions and strategies, they can learn how to manage those feelings too.

Regular use of this type of visual scale helps children to recognise the causes and triggers for their feelings and emotions. They can work out ways to help themselves improve their responses and handle things better in the future.

Let’s get started

feelings thermometer tag with what's wrong tagAt the start of the school day it’s helpful to know how a child is feeling to assess their readiness for learning today. Use the feelings thermometer as a way for them to quickly and easily communicate this to you. 

You might find it useful to provide a list of further options (like the red tag shown here) to help you identify the cause of any problems. For example, are they sad because they are hungry or tired, too hot or too cold, are the surroundings too noisy or bright?

Once any issues have been dealt with appropriately the child will be more able to access and engage with their learning.

What’s different

Are you expecting a change to routine, an unusual event or a visit to a new place today? Use the same approach to rate how comfortable the child is about this. If they are frightened, worried or anxious you can try explaining more about the reasons for the change or event or what they can expect to happen during the day or the visit.

Encourage the child to think about whether the strength of their feeling is in proportion to the situation. Does their reaction match the level of the problem? If not, discuss strategies they can use to deal with their feelings and talk about what a more appropriate response might be.

Get down to work

Before starting a task or activity, ask the child to rate their anxiety or confidence level about what they have to do. This information can help you to decide what support they might need to be able to complete the task successfully or it can open a discussion about whether their anxiety is proportional and realistic for the task faced. For example, are they:

very anxious and not sure what they need to do or worried that they are not capable of doing it?
reasonably sure of what they need to do but could use a little guidance just to get started?
feeling confident about the task and happy to try doing it alone?

 

How was that?

Revisiting the scale once a task, activity or event has finished offers an opportunity to reflect back and learn from it. Was their actual experience better or worse than they had expected it to be? How would they feel if they were now faced with the same event again?

If they were initially very anxious but with support were able to succeed, should this make them more confident about the next time they face the same task or a new one?

Another good time to check in with the feelings thermometer is after school, particularly as they may keep emotions locked up until they get home. Just as at the start of the school day, it’s a quick and easy way to communicate how they’re feeling and alerts you to any issues that have occurred during the day that might need further investigation or discussion before settling down to homework or evening activities.

What happened there?

strategy tags to manage emotionsSensory overload, changes to routine, difficulties processing information, social interactions or being tired or hungry are all common triggers for anger or challenging behaviour.

Getting a child to think about and try to understand what made them angry or prompted their behaviour begins to develop their emotional self-management skills. Using a feelings diary can be a good way to identify patterns of behaviour and incident triggers and plan for minimising stress at key points.

Encourage the child to use a feelings scale to start recognising how they feel or what their impulses are when their anger level starts to build. Set up some different coloured tags for each level like the ones shown here. Use each list as a reminder of suitable calming ideas they can try to help prevent their progress up the anger/stress scale and bring their feelings under control.

This technique can also be used to identify and respond to inappropriate behaviour from over excitement or a high arousal state.

Just saying

Children not only need to understand and interpret their own feelings, it’s important for them to be able to recognise the feelings of other people around them too.

When a child is familiar with using the feelings tag-o-meter to rate their own feelings and emotions, they can build their skills in appreciating other people’s feelings too.  

As a parent, carer or teacher, you might want to let the child know that you are pleased with their work or attitude today. They may not have behaved well and you want them to understand that makes you sad. Reinforcing your words by showing them on the scale how you feel helps them develop their ability to recognise and interpret verbal and non-verbal emotional signals.

Let’s be friends

school behaviour prompt tagYou can take a similar approach when dealing with social interactions between the child and their classmates, friends and family. If there’s been a disagreement or incident, try using the feelings scale to help those involved communicate with each other about what happened, how they are feeling and how they might be able to better control their actions in the future. Our School Timetable sticker pack (included in the kit “I know what to expect at school”) has a number of useful behaviour-related symbols that would help with identifying positive strategies in these situations.

The more practice a child has at acknowledging and recognising their feelings, using different coping techniques and appropriate communication strategies, the more relaxed and content they can be knowing that they have the skills to cope. A child who can identify his own emotions is more likely to be able to identify the emotions of others. Children who can see a situation from the view point of others are more able to engage in problem-solving and other social activities. 

This guide is available as a free downloaded using the link below. The guide for this topic also covers the information in our post Understanding feelings and emotional intelligence.

  • Back-to-School Self-Talk Prompt Sheet

  • cover image feelings notebook extra stickers

    Extra sticker sheets for Feelings Notebook

  • Feelings & Emotions Sticker Pack

  • Feelings Bundle

  • Feelings Tag-O-Meter

  • I Can Do It Manage My Feelings Kit

  • I Can Do It Share How I Feel Mini Kit

  • cover image product feelings notebook

    My TomTag Feelings Notebook