Self-talk was key in helping Tom manage his back-to-school anxiety.
Self-talk is rehearsing silently something that you think someone you trust would say to you in a situation you find tricky or challenging. Being able to self-talk is useful as it is something a child can do to help themselves. It has been a game-changer for Tom as he can use this whenever he is feeling overwhelmed.
Let’s get started
You can use this Prompt Sheet to help your child develop self-talk to manage their back-to-school anxiety.
Here are our tips for using the sheet which is available as a free download using the link below:
Let your child know that lots of people are anxious about going back to work or school. This helps them feel that their worries about going back to school are valid.
Give your child the words to describe their feelings. Introducing and explaining the phrases ‘back to school blues’ and the ‘oh no feeling’ help them understand the emotion and feeling behind their back-to-school anxiety.
Ask your child to show you how strong their ‘oh no feeling ‘is. If they struggle with language try simple visual scales using either numbers ( 1-5) or the intensity of colours (green – red) to make it easier for them to rate their feelings. The TomTag feelings tag, a thermometer-style sequence of 6 feelings faces, is a good option to use.
Explain that their ‘oh no feeling’ is the right feeling but too big. Like a shout that needs to be shrunk to the right size – a whisper. The drawings on the Prompt Sheet are a good way to show this
Tell them that to shrink the ‘oh no feeling’ they should think of 3 good reasons why going back to school is ok and say these reasons to themselves when they feel the ‘oh no feeling’ starting
Imagine being able to send your child off to school without the usual dramas, panic, shouts, and screams over lunch boxes, PE kits or homework!
Anxieties over forgotten items can be avoided with a little preparation and practice.
When children have the skills to pack their school bag independently, they can start taking responsibility for their belongings without you having to remind them all the time. This also helps them at the end of the school day when they need to know what to bring home again.
Even the youngest or most disorganised child can soon get the hang of finding and packing everything they need for school, giving them a great sense of achievement too.
Visual checklists are an ideal tool to use when helping your child learn how to get organised and become more independent.
Find the right school bag
With so many bags to choose from it is important to find one that matches your child’s needs.
The main consideration is comfort.
• Does the bag feel good to wear?
• Do the straps feel sufficiently strong?
• When filled, is the weight of the bag evenly spread about?
Choose a sturdy bag that has multiple compartments and zipped pockets. Check that all the fastenings work cleanly and it is easy to access. If you child gets frustrated finding things or struggles with fiddly zips, opt for fewer pockets and Velcro fastenings instead.
Let’s get organised
Start with an empty school bag.
Ask your child to sort out their school things into clear categories. For example, school supplies such as pens, pencils, notebook, communication book in one pile. Items that go back and forth to school like lunch boxes, water bottles and PE kit in another pile.
Assign each item to a compartment or pocket. A big compartment can be for books and their lunch box. A smaller pocket for writing equipment.
A school-home folder is ideal for any loose papers, letters, or permission sheets that need to go back to school.
Make a map
Once everything has its place, help your child draw a picture of their school bag and label what goes where. This school bag ‘map’ will help remind them where things go when they are packing up for the
Encourage your child to practice emptying their bag and putting everything back in the right place.
Keep a copy of the map in the front pocket of their school bag plus a copy at home.
Pack all the right kit
Use a simple checklist attached to their school bag listing all the things they need to remember to take to school for each day of the week. The checklist should be sturdy and easily seen. Using different coloured lists makes it easy to identify the right list for each day.
Picture cues work well for younger children or non-readers as well as older children and those with additional needs such as dyslexia, dyspraxia, autism, or ADHD.
Getting into the habit of packing the night before is a great way to avoid the last-minute panic searching for homework or PE kit in the morning when you really should be leaving the house!
Bear in mind that children may need lots of practice before they can organise and pack their school bag independently.
Give lots of opportunities to practice these techniques and make forgotten school items a thing of the past.
‘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🌈
Lesson 1: Let Go Of Expectations
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
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
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
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
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
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
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
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 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 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
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
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
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?
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.
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
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
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
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
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
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.
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.
It has prompted me to reflect on the occupational therapy (OT) my son, Tom has received over the years. Gulp… it’s also focused my mind on the amount of money I’ve spent on buying OT resources!
The main emphasis for Tom has been Sensory Integration Therapy to help him cope with his sensory difficulties. A personalised programme of activities focusing on developing his gross and fine motor skills and his sensory perception (i.e. touch, body awareness, balance, auditory & visual skills) has been game changing.
Naturally some activities and resources have proved more successful than others so I thought it would be helpful to select our TOP 10 to share with you.
1. HUG & TUG
Tom followed a series of activities from The Handle Institute . Hug and Tug was one of his favorites and an exercise he still uses today.
This simple exercise can calm anxiety, increase concentration and help develop fine motor skills. Just needs two hands and can be done at any time!
Rest your arms on a supportive surface or place them lightly against your lower ribcage. Interlock your index fingers.
Squeeze and pull with your interlocked index fingers – one relaxes as the other pulls, then the other relaxes and the other finger pulls. Both of your arms remain relaxed – only the fingers are moving.
Repeat the back and forth pull-release three or four times as the index fingers stay hooked together.
Unhook your index fingers and interlock your middle fingers , and repeat.
Continue with all fingers and then, finally, hug and tug your thumbs
2. SCOOTER BOARD
At his last school Tom cut quite a dash scooting along the corridor propelled by his arms! Great for building up shoulder stability and core strength.
Make a set of cards showing different animal walks then take it in turns to choose a card and complete the exercise shown on it. Try dog walks, bunny hops, kangaroo jumps, crab walks – whatever takes your fancy. Great for building upper body strength and a sense of humour!
This is a good activity to do with siblings and as a rainy day or birthday party game.
Stuck for ideas? Pop over to the blog Pinning With Purpose for some good tips on how to make your own animal exercise cards.
Fledglings have are some lovely reasonably-priced Rainbow Putty which comes in a variety of different colours and is colour-coded to indicate the level of resistance.
7. HIDDEN TREASURE
Fill a tub with rice or another pulse and hide small objects such as toy cars, figurines or sweets. Great to develop fine motor skills and another fun party game.
Swinging is good for vestibular movement. My son particularly liked this cuddle swing.
They can be expensive to buy so here’s some tips on how to make your own cuddle swing and there’s even some ideas for versions that don’t need attaching to the ceiling.
9. CRAFT ACTIVITY
There are plenty of options here – we chose to make our own domino game using card, craft foam, marker pens and stickers.
There were lots of opportunities to practice fine motor skills with all that cutting, sticking and drawing and we all enjoyed playing the finished result.
10. CHEWY TUBE
Our bright red T-shaped Chewy Tube saved many a shirt cuff and tie being shredded! Very resilient and helps develop chewing skills as well as reducing anxiety. Sensory Direct and Chewigem both have a good range of oral motor aids to choose from.
Click here to find out more about what occupational therapists do and how occupational therapy can help .
My autistic son Tom (the inspiration for TomTag visual schedules) struggles with changes to his routines. His autism means that he perceives the world differently to other people. For him, the world can often seem a strange, unpredictable, and confusing place. It is understandable why he craves the stability and predictability of repetitive routines and activities, and the comfort of familiar food. However, as a wise man once said, the only constant in life is change. Learning how to be flexible and less rigid about routines is a crucial life skill. It is one that Tom has developed over the years, with the help of visual supports.
Visual schedules are a great tool for teaching flexibility around changes to routines. This may seem surprising – surely a schedule means sticking to a repetitive routine? However, it’s not the visual schedule that makes changes to a routine difficult but the way it is used.
In this blog, I’d like to share with you an approach you can use with TomTag visual schedules to help your child be less rigid and more tolerant of changes to their routines.
Use a schedule
Make sure that your child understands how their schedule works and uses it regularly. If your child doesn’t understand their schedule or use it regularly then it is unrealistic to expect them to deal with changes to it.
A TomTag I am flexible tag is a great way to introduce your child to changes to routines when used alongside their normal routine tag. Using the format ‘instead of‘ … ‘I am flexible’… is a simple visual way to familarise your child with a proposed change in their routine.
Words can have a powerful effect. I am flexible is a positive affirmation that will give your child a sense of achievement and boost their self esteem.
Start with positive changes
Start with something positive, for example, a change to a preferred activity or food choice.
In the examples shown- sand play instead of inside play, fish fingers instead of pizza (go with the preferred activities/ food choices for your child!)
Start with a change that is not upsetting. This also reinforces the idea that a change does not always have to be negative.
Giving initial warnings
Although the aim is to get to a stage when you don’t have to give warnings about changes – life is unpredictable after all – you shouldn’t expect your child to immediately accept changes without doing the necessary groundwork.
Like all new skills, the best way to learn is to break the skill down into small sequential steps.
Refer to their morning schedule tag and show them the proposed change. In this example, if their morning routine shows inside play then show them the I am flexible tag with the new play activity at the earliest opportunity e.g. before breakfast.
Ask them to change the activity on their schedule to the new activity themselves. Our symbol packs include 2 copies of every symbol so you don’t have to worry about running out of symbols. Their morning schedule tag now shows the new activity.
Keep the I am flexible tag handy. Depending on your child’s level of understanding, a short verbal explanation of why the change has taken place would also be helpful.
Give another warning just before the changed activity happens. Show your child the I am flexible tag to reinforce your verbal warning. This will help them remember the change and prepare for it.
Praise and encouragement
Praise your child specifically for handling the change well using supportive positive statements like, “I like how well you managed it when we changed the schedules” or “Change can be hard, but you are doing a great job!”
Saying “You are so brave handling that change in the schedule without getting upset!” is particularly useful if your child is very anxious about change.
Try not to say “See it wasn’t so bad was it!” as this could belittle your child’s genuine feelings of anxiety about changes and make them feel anxious about having these feelings.
Fade the warnings
Once your child can manage changes to their routines with warnings, start moving the warnings nearer to the time when the actual change is going to happen.
So in the example tags I have used above, you could move the warning about the change of play activity to later in the morning.
Make sure that your child’s schedule is always accurate.
Being prepared makes changes to routines so much easier to manage. It also keeps the schedule consistent so your child knows they can rely on it.
I hope you find this approach useful in helping your child learn to accept and manage changes to their routine.
Want to make your own schedules, routines and I am flexible tags like the ones shown in the examples here or need more advice before getting started on introducing routines or changes to routines? Take a look at the resources below or get in touch with Clare via our contact page.
Play is one of the main ways that children learn and develop. There’s no reason why children with autism who use visual supports are any different. So why not bring play and fun games for children with autism into your visual supports too. To them they’re playing games, but you know that they’re getting some occupational therapy, speech activities and thinking skills thrown in. Games may also help children with autism engage more readily with using their visual supports. It’s a win-win!!
Here’s some of our ideas you could use to help your child engage with TomTag.
#1 Indoor I- Spy.
Stuck indoors? Why not encourage language and memory skills with a fun indoor I -Spy game.
🌈Ask you child to choose a colour tag and room in the house.
👀Can they look round that room and find, name or point to items that are the same colour?
✔Click a reward button into the tag for each item found.
😊Praise them for their effort and move onto another colour and room.
In the examples shown, we used stickers (rooms and stars) from our In the house sticker pack. We drew the other symbols onto blank stickers.
#2 Outdoor I-Spy
Use your daily walk to play I- Spy and spot things you may see in your city, town or village using a personalised TomTag checklist.
TomTag is also super portable and robust – ideal for taking with you when you’re out and about!
🗨Ask your child to suggest things they are likely to see on their walk – perhaps they can guess what order they will spot them in!
✍Make up the checklist together – we’ve used stickers from our Out and About sticker pack but you can just as easily draw or write on some blank stickers.
👀 On your walk, encourage your child to spot the things, find it on their tag and turn the button over. This shows they’ve seen that thing.
🧐Praise them for keeping their eyes open and being a good detective.
#3 Feelings & Emotions Charades
Help your child understand, recognise and express their feelings and emotions with a simple game of charades.
No Oscar winning performances required!
💬Talk to your child about the feelings and emotions included in the game – choose ones that your child needs some help with.
🤏 Jumble up the feelings and emotions symbol buttons and ask your child to choose one for you.
😀Act out the feeling or emotion shown. Can they guess it? If so, pop it in the tag otherwise have another go.
🔁Swap places and ask your child to act out the feeling or emotion for you to guess.
Practice sequencing skills with a simple game of “what happens next”.
This game can also help reinforce familiar daily routines so it’s a win-win for everyone!
Here’s how to play the TomTag way.
🤏Choose an activity sequence
🤔Jumble up the symbol buttons and ask your child to find the one they think they should come first, second etc.
✔Click them into the tag into that order and ask them to check it is correct.
🗣Call out an activity and ask them to find it in the tag and turn the button over to show they have completed the activity.
Depending on your child’s ability, you could take out a few of the steps and build up to the longer 6-step sequence. We’ve used symbol stickers from our two popular mini-kits: teeth brushing and morning and evening routine.
Do you have any tips for games you can play with your TomTag? Please let us know in the comments below.
This year’s World Autism Awareness Week takes place against the backdrop of a global pandemic. With a third of the global population under lockdown our daily lives have been dramatically changed. Forced to remain in our houses and adapt to new circumstances, many of us will be feeling bewildered, frustrated and anxious.
Sweating it out!
The anxiety many of us are now experiencing around these unprecedented changes gives us an insight into how many young people with autism, like my son Tom, experience an unwanted change of plan – it’s fraught with worry, it’s out of anything we could have predicted and it’s not what we wanted.
Our ‘new normal’ in these strange and unsettling times is very much how he feels all the time. Imagine having to deal with that level of anxiety every single day!
So, given everyone’s heightened levels of anxiety how can you manage autism and anxiety in a lockdown?
We’d like to share some daily strategies which we are using to support Tom’s mental health during this lockdown period. We’ve called it the SWEAT approach – let’s sweat this one out!
Socialise – maintain social connections
Tom misses his dad, grandparents and college friends. Thankfully technology makes it relatively easy to keep connected. However, just as in normal social situations, we’re careful not to put demands on him to socialise virtually either. We offer him a choice of how he stays connected and how often he wants to have contact.
Work – provide structure and routine
Routines and rituals help establish stability and order for children and young people with autism like Tom.
Like many young people with autism Tom struggles with flexible thinking. That means he finds it difficult to adjust and readjust to changes in his routine and this can cause him anxiety. A useful strategy has been to highlight what has stayed the same and what has changed. This reassures him that even with all the uncertainty some things, like his college work, mealtimes and bedtime routines, remain the same.
Keeping familiar routines going as much as possible is therefore important to provide structure and reassurance. Tom accesses his college work and sessions with his speech therapist, English tutor and German teacher online. A simple written visual schedule shows him what to expect each day and can help navigate these confusing times. You can also create symbol-based home visual schedules quickly and easily with TomTag.
However, it’s important not to set the bar to high! Be mindful that there will be days when the ‘home-schooling’ isn’t done and instead it is just a day of being together. An example of this was during the recent warm weather when we abandoned the schedule and went for a family walk.
Emotions – share worries and concerns
Set aside time each day to talk about worries and concerns. Try to contain your own anxieties around the current situation because this anxiety gets transferred to our children. Now more than ever our autistic children need patience and support from the people they love.
Tom, like all of us, is naturally worried about events and this is amplified by worries about whether he is catching or spreading the disease.
We keep news coverage to a minimum and explain things in a clear and consistent manner using language appropriate to his level of understanding.
Making a wish list, where we write down all the things we want to do after the pandemic has passed, is also working well – though at the moment, it mostly revolves around football and Swiss trains!
Active – encourage physical activities
Keeping active is good for both our physical and mental well being. Tom has a daily fitness programme and he’s set up an exercise challenge with his speech therapist.
Focusing on activities and encouraging him to do some chores – like washing the car and helping his sister deliver essential shopping to his self-isolating grandparents and other vulnerable members of the community – provides positive reinforcement that is so vital to keep up his self-esteem, confidence and sense of purpose.
Time alone – relax with special interests
Build in lots of down time, together with time to indulge special interests. With all the family thrust together it’s important for mental well being that we all carve out some time for ourselves.
It’s a difficult time for all of us particularly for children with autism and anxiety. Hopefully by following these strategies we can sweat out this lockdown period.
What tips can you share that make this lockdown period more manageable and less stressful in your house?
At the present time, we’re all facing unprecedented uncertainty. Now that schools are closed and we are stuck at home, families like ours are under a lot of stress. For children with autism, like Tom, this is a highly confusing and anxious time. Using a visual schedule at home will help to build a sense of consistency, predictability and security for him. In this blog we discuss the reasons why home visual schedules can help children with autism and how you can get started with using them.
Why should you use visual schedules at home?
Visual schedules at home can help you to communicate to your child when activities or events will happen throughout their day.
They use a sequence of drawings, symbols, text or pictures to show what a child is expected to do.
The more children can anticipate what is happening, the safer and more secure they will feel in these rapidly changing times.
Depending on your child’s developmental age, sit down each evening and try and plan out a rough schedule for the next day. Decide which activities for the day or part of the day you want to show. Choose the length of the schedule that you think will be appropriate for your child and adjust as necessary.
A simple daily visual schedule could include some education, fun activities and chill time (for them and you!) to help give some meaning and purpose to the day. If you’re interested in creating or using educational resources have a look at Twinkl and Education.com.
Try to replicate some elements of your child’s typical day. For example, encourage them to get dressed, brush their teeth, eat breakfast, etc. You could use a mini schedule to target these specific skills by breaking down a single activity into smaller steps.
Make sure the schedule includes things like bedtime, time for exercise and meals. You could also consider giving children a chore or job to do to help them feel useful. This could be as simple as clearing the table or putting away their clothes.
Setting aside time every day to do a family activity that you know helps everyone in times of stress is also important. This could be watching a movie or playing a game.
Worried about challenging behaviour?
Try starting with activities that your child usually does willingly. It makes sense to structure the day so that harder tasks are done first when children are likely to be more rested. After schoolwork or chores are complete you can follow with easier tasks as a reward for accomplishing the harder tasks.
A home visual timetable or schedule doesn’t have to be complicated– a simple written, maybe colour-coded, chart pinned on the wall so your children can see it and refer to it will do the trick.
Does your child get anxious about school trips, days out or family holidays?
My son has autism and any trip away from home can be a challenging prospect. This is because like many children with autism, he struggles with routine changes, sensory issues and an intolerance of uncertainty.
However, over the years we’ve learnt that with planning and preparation, days out and holidays can be enjoyed rather than endured. We’d like to share our top tips in order to help other parents and carers facing similar issues.
Plan, plan and plan again!
Try searching for ‘autism friendly’ holidays or days out. The National Autistic Society has a list of companies and organisations who hold an Autism Friendly Award.
Contact hotels or venues to explain your circumstances and your child’s needs – if they don’t seem supportive then look elsewhere.
Check out a destination or venue in advance. If possible make a pre-visit or get a map and consider any potential trigger areas and quiet zones you could head to in case of a meltdown.
Practice unusual events such as packing and unpacking a suitcase. A packing checklist is a great way to involve your child in holiday preparations and encourages independence.
Use visual schedules to show your child what to expect on the holiday, give structure to their day, and help with transitions between activities.
Social stories are a useful way to explain what ‘going on holiday’ actually means. Depending on your child’s language ability, you can discuss what concerns they have about the holiday or trip and then work with them to come up with a list of possible solutions.
If you’re travelling by plane, check the airport website to see if they offer any visual guides or booklets. Manchester and Gatwick have excellent guides and many UK airports now offer autism specific page on their websites. You may also be able to request a wristband or lanyard which entitles you to use the fast-track lanes at security or access quiet waiting rooms. Alternatively, you might want to make your own visual schedule for the airport to explain the process.
Hope for the best, prepare for the worst
However well you plan there’s no guarantee that unexpected events , such as delays won’t occur. It’s a good idea to have a ‘distraction’ pack to hand. A bag containing snacks, music or noise-cancelling headphones, games or entertainment devices to head off any potentially challenging behaviour.
Consider a form of identification such as a card or ID holder attached to your child’s clothing (such as a belt loop) just in case they wander off or become lost. This should give their name, your contact details and any medical requirements. Even if your child is capable of providing this information themselves, in a new and stressful setting this will be much harder.