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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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Sign up for your bravery booster bundle!

Finding your brave – Children’s Mental Health Week

Day 5: What does ‘finding your brave’ mean for a child with autism?

What does ‘finding your brave’ mean for YOUR child? We hope you’ve found some useful advice in our series this week to help you answer that question and support your child and their mental health.

Here’s a summary with links to each of the blogs in this series :

  1. Explain to your child what bravery means and how it relates to their life and their personal challenges – What is bravery?
  2. Turn detective and get a deeper understanding of your child’s fears, worries and anxieties and the thoughts that are holding them back – What are you scared of?
  3. Choose some support tools and create strategies to help reduce uncertainties, learn social skills and aid communication – Overcoming fears – getting closer to brave
  4. Acknowledge and celebrate your child’s bravery in all its forms to boost their self-esteem, confidence and mental health – How does being brave make us feel?

Would you like a bit of help to get started?

sign up for bravery boosters button

Click the button above to sign up now and we’ll email you our bravery boosters bundle!

You’ll receive a guide to developing good emotional intelligence that you can download and print, a video guide to using a feelings diary and a discount code to use when you purchase any Feelings and Emotional support products. A selection of these products have been featured in our ‘finding your brave’ series. 

  • 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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How does being brave make us feel?

boy stood on stacked logs with text how does brave make you feel

Finding your brave – Children’s Mental Health Week

Day 4: What does ‘finding your brave’ mean for a child with autism?

It’s time to celebrate!

As we’ve talked about earlier, many children with autism show their bravery in the everyday acts of dealing with life. Recognising and celebrating this bravery is just as important, if not more so, as acknowledging it for the ‘big’ brave events.

Showing your child how to see and celebrate their bravery in the seemingly smaller things boosts their self-esteem, confidence and mental health. Congratulating your child on each brave step (big or small) helps them feel good about themselves and they can learn to find courage to do bigger things.

If you’ve missed any of the series so far, you can recap here: 

How does being brave make us feel?

Bravery often doesn’t feel like bravery. It can feel like butterflies in your tummy, sweaty hands, racing thoughts or maybe a moment of intense focus and concentration. It’s only after being brave that we feel proud, happy and confident – that elusive ‘I feel good’ feeling! When we are brave we can have fun, meet new people, share a new experience and boost our mental health and well-being.

Bravery can mean so many things: big and small. As a parent of a child with autism, it’s often hard not to compare them with their typically developing peers and their acts of bravery. Others may have learnt to ride a bike, play a musical instrument or been picked for the school football team whilst your child is struggling to put on their shoes, hold a pencil or sleep through the night. 

Everyday heroes

Getting dressed, going to school or keeping calm when there is a change to routine are all examples of bravery if you have anxiety, sensory difficulties or struggle with flexible thinking. 

Take time each day to note down an instance when your child has been brave. We use our TomTag Feelings notebook to record these moments but you could also write each moment on a note and pop them into a note jar. Simply pausing and recording these moments highlights the experience of being brave making it more likely to reinforce positive memories. Using a notebook, note jar or similar will help you and your child to revisit and reflect on the ‘brave moment’ entries when similar challenges arise in the future. Together with your child you can build a bravery chain, link by link.

Its also important to reassure your child that not feeling brave is okay and that other children will often feel this way too. This is another time when it can be helpful to use a visual feelings scale (like TomTag’s Share how I feel tag) to help your child show or tell you how they are feeling. Acknowledge their feelings and praise them for ‘finding their brave’ to share them with you. Remind them that it takes time and practice to ‘find your brave’ – be patient if you need to repeat the process we discussed earlier of identifying fears and finding support strategies to overcome them.

Tom’s story

Over the years we’ve always tried to celebrate all Tom’s acts of ‘bravery’. We’ve praised and encouraged him with seemingly small things like saying hello, sitting at the table or making food choices. Bravery has unfolded one situation at a time. 

Over time, he’s overcome his fear of speaking, meeting new people and learning new skills such as skiing, riding a bike and, more recently, even driving! When he faces new challenges, we remind him how he found his brave on all these occasions to reassure him that he does have the strength within to succeed. 

tomas putting letters on a board in front of mum as a child and presenting a display on Switzerland as a young adult

How does your child show their bravery? Share your proud moments with us – we’d love to hear from you and share your joy!

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Overcoming fears – getting closer to brave

COVER IMAGE FOR DAY 3 CHILDREN'S MENTAL HEALTH WEEK BLOG, OVERCOMING FEARS

Finding your brave – Children’s Mental Health Week

Day 3: What does ‘finding your brave’ mean for a child with autism?

We’ve introduced the idea of what bravery means and why being brave can make us feel good and looked at ways to help your child identify and understand their barriers to being brave (what are you scared of?). 

Now it’s time for some action! Let’s look at some ways you can support your child to help them overcome some of their fears and get closer to finding their brave.

Overcoming fears – getting closer to brave

Feeling worried about the unknown or new situations is common and familiar to almost all of us.

For many children with autism, normal daily life can feel like the great unknown every day. If you’re worried about what’s going to happen, struggle with anxiety around people and social situations or can’t communicate what you want or need, every single day can feel scary and overwhelming. It’s very hard to ‘find your brave’ when you’re in a constant state of anxiety. Being scared and anxious is exhausting and can often lead us into more complex mental health problems.

There are strategies we can use to deal with these uncertainties and ways to learn skills that can help combat anxieties. It’s time to meet the superheroes – visual supports!! 

Finding your brave – reducing uncertainty with visual supports

An intolerance of uncertainty is a common cause of anxiety for many children with autism, causing them to ‘act out’ or display other unwanted behaviours when their routines change or they are in unfamiliar situations. 

A visual schedule or timetable takes away the element of surprise and makes it clear what your child can expect to happen. Their anxiety level will come down and it will be easier for them to transition between activities, finding their brave to move on.  

a diary pageIn this diary entry, Tom felt worried because he didn’t know whether his Speech and Language therapist was visiting him at school that day. By reminding him to check the timetable in his planner, Tom was able to reassure himself about when to expect to see his therapist.

tomtag overlaid on an image of a child in the dentist's chair receiving treatmentHelping your child to ‘find their brave’ for unfamiliar or ‘scary’ situations – things like visiting the dentist, doctor or hairdresser – is eased by good planning and preparation. Using a visual tool like TomTag or a simple social story can help you to communicate and explain to your child what’s going happen before the event, reducing the uncertainty and consequent anxieties.

Finding your brave – learning social skills with visual supports

Social cues can be difficult for many children with autism to understand as they interact with others. They get anxious about what is expected of them socially and can find if hard to interpret other people’s behaviour.

Visual prompts can be useful in teaching social rules such as sharing, taking turns and waiting. With practice and patience, children can learn to use these supports on their own in social situations, providing them with a permanent reminder of expectations and setting the stage for them to find their brave!

In the earlier example, Tom was worried about his speech therapist being late. Using drawings, we reminded him about the concept of waiting. Knowing what was expected of him in this situation and giving him some self-help strategies (OT exercises) helped to calm him down.

drawings to help Tom find self-help strategies for waiting for therapisr

Finding your brave – communicating needs with visual supports

Sensory overload, changes to routine, difficulties processing information, being tired or hungry are all common triggers for anger and challenging behaviour. In these situations, it is almost impossible for a child to be brave.

Tom remembers what he sees rather than what he hears as he can’t process too many words at once. Ask him questions or give him instructions and his stress just increases – the more we talk, the less he hears! Offering children like Tom a non-verbal means of communication to use allows them to understand and express their feelings without the stress of having to process language at the same time.

tomtag samples from the feelings and emotions range

The TomTag Share how I feel visual feelings scale is one of our best sellers – and you can see why! It’s such a simple device but a very quick, effective and efficient way for your child to show or tell you how they are feeling. Once they’re learnt to identify and understand what each feeling means, you can use more detailed visual guides to build self-help strategies they can use to cope with different feelings and emotions, giving them the reassurance and confidence they need to find their brave.

Next: How does being brave make us feel?

The benefits and joys of finding your brave 

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Finding your brave – what are you scared of?

background of mountains, 2 children sitting with thought bubbles to show what they are afraid of

Finding your brave – Children’s Mental Health Week

Day 2: What does ‘finding your brave’ mean for a child with autism?

Now that you’ve introduced the idea of what bravery means and why being brave can make us feel good (follow the link if you missed it), we look at helping your child understand what can hold us back and the feelings that can stop us being brave. 

What are you scared of?

background of mountains, 2 children sitting with thought bubbles to show what they are afraid ofWhat stops us being brave and why can being brave be so difficult? 

Being brave generally means facing something difficult or a situation we’re unsure, worried or scared about and going ahead anyway.

To help your child with autism ‘find their brave’, you need to understand what those fears, worries or anxieties are that are their barriers to being brave. It’s the thoughts and feelings we create ourselves that are most often what get in the way of doing something or trying something new. These unhelpful thoughts might include worries about getting something wrong, being embarrassed or people laughing at you.

Firstly, let your child know that it’s normal to have these emotions but that there things we can do to help ourselves to stop these thoughts and feelings getting in the way of what we want or need to do and affecting our mental health. To find out what their barriers are you may just be able to ask them. If your child is non-verbal or finds it tricky to talk about their feelings – perhaps because they have limited language skills – you will need to try some other tactics. 

TomTag feelings notebook with example page filled inFor Tom, who has autism, just talking about his fears can be a cause of stress too. We’ve used the TomTag Feelings Notebook to help him communicate with us and share his concerns in a less direct or confrontational way.

In this example, he describes feeling nervous about meeting his teacher as he was unsure about what to say to her. He goes on to share that he always feels nervous when he sees other people. An example of how unhelpful thoughts – like saying something wrong or that people might laugh at him – are the barriers to bravery here.

 You can use also use a diary format like this to help you and your child keep a record of feelings, anxieties, worries or behaviour which will help you to track any patterns and identify underlying triggers. Turn detective, be curious and think about what might be beneath their behaviour to see what the real issues are.

Right feeling, wrong size?

Sometimes, your child won’t even be sure what they’re afraid of, which can in itself make them feel more anxious and afraid. It’s also possible that they may have difficulty understanding the size or intensity of their feelings, something Tomas finds quite difficult.

When he was younger, Tom was terrified of flies. This was particularly difficult in the summer months as he would scream and become extremely anxious about going to sleep. Every evening we would have to make sure that his bedroom was free of the unwelcome guests before he would even go into his room.

With support, Tom was able to use drawings as a visual tool to help him share what it was about flies that frightened him and how they made him feel. He thought that the fly would eat him and he felt panic! Once we knew what the fears were, we could reassure him that it was normal to have feelings about flies. We were able to show him that his feeling of panic was unhelpful as it made things feel more scary than they really were. A case of the right feeling but the wrong size.

drawing by Tomas to explain his fear of flies

Doing the detective work was crucial. Had we not known about the fear then Tom’s reluctance to go to bed might have been misinterpreted as challenging behaviour around bedtime routines. By understanding his fears, providing him with reassurance and making him feel safe, we could encourage him to be brave with the help of positive thinking and a bright new fly swatter which we showed him how to use! 

Next: Overcoming fears – getting closer to brave

Looking at some ways you can support your child to help them overcome some of their fears and get closer to finding their brave.

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Dyslexia and executive functioning skills

Dyslexia is most commonly understood as a condition that causes difficulties with reading. It is less well known that dyslexia can also impact on organisation and time management skills, which is sometimes referred to as executive functioning. 

What are the signs?

A child with dyslexia who has executive functioning issues may have difficulty:

  • remembering to take to school everything they need for the day 
  • being organised and preparing their kit in advance
  • sticking with an activity and not being distracted
  • understanding what day of the week it is and what different things they need to do each day
  • remembering their routine and prioritising the tasks needed to get ready for school  

What can you do to help?

There’s lots you can do to help a child with these issues. Here’s just a few ideas:

  • Get into a regular routine and stick to it. Children who struggle with time management often feel more secure and less anxious with a familiar routine.
  • Make checklists to break down a task or routine into smaller steps. Visual prompts work better than verbal reminders as they are constant and consistent.
  • Use calendars and planners – colour-coding often works really way to identify regular activities and highlight special events.
  • Encourage development of organisational skills with lots of repetition, reminders and practice. 

How could TomTag help?

  • school girl carrying rucksack with packing checklist attachedTomTag is ideal for all children with dyslexia as the picture symbols we use are easily recognisable and don’t rely on a child’s ability to read for TomTag to be effective. 
  • Make morning and evening routine reminders for tasks that need to be completed and the order they should be done using an I know what to expect – morning and evening minikit or for more varied options try these kits I can do it self care skills or I know what to expect at home
  • Create a school bag packing checklist using the I can do it pack my bag for school kit that will remind them exactly what they need to take to school each day, and bring home again. 
  • Take advantage of TomTag’s colourful tags by colour-coordinating checklist and routine reminder tags with any planners, calendars or charts that you’re also using.  

Useful resources:

  • Back-to-School Toolkit

  • Early Years Home Toolkit

  • Early Years Sticker Pack

  • I Can Do It Learn At Home Kit

  • I Can Do It Pack My Bag For School Kit

  • I Know What To Expect – Morning and Evening Mini Kit

  • I Know What To Expect At Home Kit

  • I Know What To Expect Early Years Kit

  • Learn At Home Sticker Pack

  • My School Kit Sticker Pack

  • Organising My School Bag

  • Primary Years Home Toolkit

  • School Morning Routines

 

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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