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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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Making pancakes with children with autism

tomtag holders set up with instruction symbols for pancake recipe

Pancake day – it’s one of our favourite days of the year! 

Tom loves pancakes and helping to make them. With inspiration from this great visual recipe guide from Widgit Software we’ve set up TomTag with appropriate visual prompts so he can follow the recipe with me. There’s definitely no prompts needed for eating them!

 

First we get out all the equipment 

pancake equipment list on TomTag and items displayed

 

and then the ingredients 

 

pancake ingredients listed on TomTag and items displayed

 

 

 

Then it’s time to follow the recipe

 

pancake recipe

 

before choosing our favourite topping

 

pancake toppings choices listed on TomTag and items displayed

 

Have fun making your pancakes – I know we did, yum-yum!!

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Cooking – TomTag life skills

bread on grill tray being put into ovenBeing able to create quick and healthy hot meals becomes increasingly important as children get older and need to learn skills for independent or supported living. Following simple recipes provides opportunities to work on reading and listening skills, sequencing, nutrition, hygiene and learning to use kitchen tools.

The key thing to remember is to start with recipes that are simple enough to follow with limited assistance, building up slowly to add in more complex skills over time.

We’ve looked at preparing some non-cook simple meals for breakfast, snacks and lunches in our Simple Meals blog using symbols from our Food & Drink Basics pack.

With the additional symbols included in our Food & Drink Extended sticker pack, more confident or experienced learners can learn to prepare, cook and serve simple hot meals such as beans on toast, cheese on toast, hot sandwiches and egg recipes.  This sticker pack is available as a stand-alone item or included in the In the Kitchen and Independent Living kits.

Cooking – learning life skills with TomTag

washing hands under running water from tagHygiene

Don’t forget to use the opportunity to teach or reinforce rules about hygiene in the kitchen. We’ve included symbols for washing hands and wearing an apron but you could also use blank stickers to add reminders to wipe worktops or store food in the fridge, or use some of the symbols from our domestic chores Clean & Tidy pack.


tomtag shopping list with trolley and shopping bagPreparation

Show the images for the utensils and food that will be needed to create the recipe you have chosen and check you have everything listed before you begin.

You might also want to incorporate a shopping trip as part of your preparation to find all the ingredients you will need. The My Shopping List sticker pack and Help at the Shops kit would be useful here. For more shopping with TomTag tips, read our Shopping Life Skill blog.


tomtag with symbols for cutting food and preparing fruit Kitchen safety

There are lots of skills required in the kitchen besides dealing with the food itself. Knowing how to turn cookers and ovens on and off correctly, taking appropriate precautions with hot equipment, learning safe use of sharp knifes and other utensils are all essential skills to be learnt before a young person can be left to cook unsupervised.

Build on these skills gradually and move on to the next stage only when the individual is ready and capable of showing the necessary responsibility.


tin of heinz beans with toast, butter and 2 tomtags overlaid with symbols to make beans on toastChoosing recipes

Using a set of TomTag button holders and the symbols we’ve included in our Extended pack, you can quickly create step-by-step instructions for numerous simple recipes such as beans on toast, soup, sandwiches, eggs (scrambled, fried or boiled), cheese on toast and pasta with sauce.


tomas carving turkey at christmasServe it up

Be sure to give compliments and praise and encourage them to keep building on their skills. Let them be the first to taste what they’ve made and ask for suggestions of what they’d like to try next.

Serving and sharing meals with others offers opportunities for practising communication and social skills too.


 

Resources

Jamie Oliver’s Simple Cooking Skills website has a simple and visual layout and many of the recipes even include step-by-step photo illustrations.

Cooking with Autism also have a useful site with easy to follow recipes written in simple language.

Free to download from Widgit Symbols is this accessible symbol-supported recipe sheet for making pancakes

 

  • At The Shops Sticker Pack

  • Clean & Tidy Sticker Pack

  • Food & Drink Basics Sticker Pack

  • Food & Drink Extended Sticker Pack

  • Going Shopping

  • I Can Do It In The Kitchen Kit

  • I Can Do It Independent Living Kit

  • I Can Do It Learn At Home Kit

  • In The House Sticker Pack

  • Learn At Home Sticker Pack

  • My Shopping List Sticker Pack

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Simple meals – TomTag Life Skills

I’ll never forget the first time Tom made his own jammy toast. Okay, so there was more jam on the kitchen worktop than the toast, but the pride I could see on his face made the cleaning up instantly forgettable.

And the ‘nomination for the life skill that has made the most positive difference to my life to date‘ goes to …. drum roll, please …. Tom making his own hot chocolate on school mornings! I gain a few precious moments to enjoy my breakfast cuppa whilst it’s still relatively hot!

It’s sad but true that man (or boy) cannot live on jammy toast and hot chocolate alone. However, learning to make simple meals, a favourite hot drink or snack is a great starting point for developing independent life skills for older children or young adults with autism.

Visual supports and guides make teaching these vital life skills so much easier and our TomTag Food and Drink Basics sticker pack is designed specifically to help with this task.

Here’s some of the ways we’d suggest for using this pack:

  • Step-by-step sequencing instructions for making breakfast, snacks, simple lunches or hot drinks. 
  • List the food choices available to your child for breakfast, lunch and snacks. 
  • List each family member’s food preference as a reminder to those preparing the food. 

Whichever way you choose, here’s a few simple tips to follow.

simple meals, choosing the right task, widgit symbol for cut with knifeChoosing the right tasks

Choose tasks that are appropriate to your child’s developmental level. Starter tasks might include washing fruit, cutting soft vegetables with plastic knives or spreading butter on toast (and work surfaces!).

Move on later to more complex tasks requiring greater motor skills, concentration and focus such as using a peeler, chopping with sharper knives or boiling a kettle.

 


simple meals, talking points, widgit symbol for snackTalking points, an opportunity for learning

Having children help make simple meals in the kitchen provides a natural opportunity for learning on a range of topics.

Teaching children to wash their hands and kitchen surfaces before preparing food or showing them safe ways to use knives helps them to understand the importance of kitchen safety and hygiene.

Practice reading and maths skills by comparing packet labels and counting or measuring out ingredients.

Talk about the effects our choice of food has on our health and lifestyle. Try out the NHS Change4Life Sugar Swaps app for a fun way to find out how much sugar is in our food and drinks.


simple meals, foodie fun, widgit symbol for fruit saladA recipe for foodie fun

Research shows that repeated exposure to food increases a child’s willingness to eat. On average, children might need over a dozen exposures to a food before ever putting it in their mouth, even more for a child with sensory issues around food.

Cooking meals therefore provides low pressure, fun, sensory experiences. If children associate food with enjoyable experiences, they’re more likely to be receptive to trying new foods and eating healthily. Involving children in meal choices and preparation of simple meals can help to improve their eating habits and establish a healthy relationship with food.

Cookie cutters are brilliant for turning boring sandwiches into enticing nibbles. A selection of different coloured fruits or vegetables look great laid out to make a rainbow.

This play-dough cafe we set up when Tom was younger was a really fun way to engage him with the experience of food preparation. Tom plays the role of both chef and waiter, helping to develop his communication and social skills too. 

Listen out for my most favourite comment of all from Tomas at the end “Please mummy, can we make our own food?”!


simple meals, praise, widgit symbol for washing upPraise, encouragement and letting go of the mess stress!

Be sure to give compliments, praise and lots of encouragement to your child to keep building on their skills. Let them be the first to taste what they’ve made and ask for suggestions of what they’d like to try next.

Having kids help out often means a bit more mess to clear up afterwards. Try to be patient and allow for a little extra mess whilst they’re still learning.
 


Resources for simple meals

Get free visual recipe sheets for tasty treats and snacks from The Autism helper.

Cheeriosmilkandspoon is Sarah’s personal blog account of parenting a child with food aversions and eating challenges.

  • Food & Drink Basics Sticker Pack

  • Food & Drink Extended Sticker Pack

  • I Can Do It In The Kitchen Kit

  • I Can Do It Independent Living Kit

 

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Cooking skills for children with autism and sensory issues

text cooking skills for children with autism and sensory issues. 2 images of Tom preparing and cooking meals

Tom loves to cook and takes a keen interest in meal choice and preparation. We’re immensely proud that he achieved a Jamie Oliver BTEC Home Cooking Skills qualification with the help of two highly skilled and intuitive cooking teachers at school and lots of practice at home.

Learning cooking skills not only benefits a child’s health and well-being but also builds their confidence and independence and boosts life skills in other areas, such as maths, communication and social skills.

Tom has autism, sensory issues, and movement difficulties and finds following instructions tricky; a mixture of challenges that doesn’t naturally suggest a recipe for success in the kitchen! So what happened?

His success certainly didn’t happen overnight. He took many small steps over quite a length of time. We encouraged him through his special interests (like making lorry and number shaped biscuits) and took cues from him as to when he was ready to try new things. There was a lot of planning and preparation and a good-sized dollop of patience!

Are you anxious or worried that similar sensory or motor challenges will make it difficult for your child to help in the kitchen? Does the idea of cooking with your autistic child fill you with dread?!

Be prepared to give lots of physical or visual demonstration, plenty of practice and, above all, be patient. Manage sensory triggers and start with fun cooking activities that match your child’s level of interest and ability. We think you’ll be amazed at how much your child will be able to learn, how creative they can be and maybe even the new foods they might try! 

Sensory issues

Cooking skills, Tom cooking onions in a frying pan, steam coming off, wiping head. Text overlay "frying onions - an intense sensory experience!"Cooking creates a lot of strong sensory experiences like noise, smells and mess that will affect children in different ways.

For sensory defensive children (like Tom), certain textures, smells and tastes when handling and preparing food can trigger a negative reaction. Other children who are sensory seekers are more likely to be distracted by trying to satisfy their sensory needs e.g. chewing or constantly wiping their hands. This lack of awareness can be dangerous when working in a kitchen.

It’s therefore crucial to identify your child’s triggers before inviting them into the kitchen and think about appropriate adjustments you can make in order to avoid meltdowns or bad associations with cooking in the future.

Tips to alleviate sensory issues in the kitchen

  • Keeping a record of your child’s reactions to sensations will help you prepare dishes that do not include any of these triggers. You can use a simple diary or notebook (like our TomTag Feelings Notebook) to jot down your child’s sensory triggers as well as record your child’s culinary successes.
  • Arranging food or utensils is a mess-free food activity for children who love order but aren’t ready for touching food. Let them collect and organise the ingredients, line muffin tins or set the table.
  • Exposing a younger child to play situations with various textures like magic sand, slime or play-dough can help to desensitize them to food-type textures.
  • Try using thin non-latex medical gloves to avoid skin touching food directly.
  • Onion goggles (they really are a thing!) can protect eyes from the chemicals that make our eyes water. A normal pair of swimming goggles would probably work just as well!
  • Consider the utensils you use if your child is sensitive to sound e.g. replace metal mixing bowls and spoons with wooden or plastic.
  • Offer a long spoon to create a greater distance if your child has food phobias.
  • Provide access to sensory props like chewing aids or textured towels so that your child’s sensory needs are supported and managed in a controlled manner.

Motor challenges

cooking skills, banana being cut with a knife on a chopping board. Text reads "Cooking tasks exercise a wide range of gross and fine motor skillsTom found holding knives and other utensils difficult as the small muscles in his hands didn’t always do what he wanted them to do. He also lacked strength and coordination in his arms which affected his ability to cut, chop, peel or grate. Applying the appropriate pressure for different activities (such as slicing bread as opposed to a banana) was also an issue.

Tips to support children with motor challenges in the kitchen

  • Getting the right utensils can make a huge difference. Try supersized cookie cutters to compensate for clumsy fingers or look for child-friendly kitchen knives – we love the look of this simple Ikea set.
  • Practice fine motor skills by tearing herbs and lettuce or rubbing butter and flour into a breadcrumb texture (using the ‘rubbing in’ technique for making pastry and crumbles).
  • For cutting practice, start with easy to cut food that your child likes to eat. Soft fruit and cooked soft vegetables such as strawberries, banana, potatoes and carrots are ideal.
  • There are lots of activities around cooking that involve using different muscles. Mixing is a relatively safe and fun activity. Try pancake batter, dressings or sauces and for added fun you can even try shaking them in a jar!

Following instructions

cooking skills, young girl stirring baking mixture with wooden spoon. Text reads "start with the basics"Children learn best by example and in small steps. 

Start by teaching the basic techniques such as cutting and mixing before moving onto the bigger tasks like following a recipe.
Stand next to your child and ask them to copy you step by step. Hand over hand support can help with movement and pressure issues.

Having a relaxed and fun atmosphere is the best way to teach new kitchen skills. Find a time to cook when everyone is happy and calm. Tackling cooking when you’re trying to get dinner on the table or your child is hungry will only lead to frustration and tears – yours and theirs!

Resources for cooking skills

Deborah French is a mother of four children, including 2 with special needs. Deborah’s wonderful book The Cookbook for Children with Special Needs introduces children to the fundamentals of food preparation, healthy eating and cookery skills.

In this interview with the BBC good food guide, Deborah talks about her experiences as a mother, cook and writer and her remarkable journey from parenting two children with special needs to becoming an author of multiple books.  

To find out more about using visual prompts like TomTag to help your child build confidence and develop their cooking skills, follow the link to our next blog Simple Meals – TomTag Life Skills.

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Coping with a family Christmas for an anxious teen with autism


For my son, Tom, thinking about our family Christmas meal is causing him anxiety. Spending time together and creating memories over a shared meal – it’s what many people love about Christmas – but it’s not so easy for an anxious teen with autism. Continue reading Coping with a family Christmas for an anxious teen with autism

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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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Feelings thermometer and diary

It’s often the simplest things that have the biggest impact.

A seemingly simple thing that gets forgotten, ignored or left unnoticed can cause a big problem down the line. Simple ideas, simple tools, simple changes might be all that’s needed to solve a problem or do a better job than a complex solution.

A Share how I feel tag, with its thermometer-style colour faces scale, has to be one of the simplest uses for the TomTag system but since introducing it less than nine months ago has become our best selling product.  It can be used in lots of different ways which is perhaps one of the keys to it’s success – we’ve given some ideas in this free download guide.

Having recommended in our guide that using a feelings diary can help to identify patterns of emotions or behaviour and the triggers that could be causing them, we decided to make our own! 

My TomTag Feelings Notebook

Keeping a diary gets you into the habit of noticing and naming how you feel in different situations throughout the day or at times when you feel most anxious or worried.

There’s a scale for rating the strength of your feelings and a guide to help build up a vocabulary to describe your different feelings and emotions.

By making notes about what happened during the day or at key points you can start to build up a picture over time  which helps you to see patterns and identify the common triggers or stressors. Quite often these might be simple things that go unnoticed day to day but are easier to spot once patterns emerge. 

It’s often the simplest things that have the biggest impact.


  • 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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ORganised KIDs – top tips for back to school

New uniform to buy, school shoes to get fitted, pencilcases galore in every shop – it’s that time of year again when our thoughts must inevitably turn to planning for the new school year.

Last summer our own back to school preparations took on a whole new dimension. My autistic son Tomas faced the daunting transition from his much-loved mainstream primary school to our local secondary. Clearly there would be many challenges to face and one big worry was how Tomas would manage the extra organisational demands of dealing with lots of different subjects.

Organised paperwork

folders for organising school papeworkTomas was going to need a system to help him keep his paperwork organised and in one place if he was to stand any chance of keeping on top of things. We started with eight A4 ring-binders in different colours and labelled each one with a subject. We labelled the pockets of a plastic concertina file with the same subjects and labelled one extra section ‘letters’ to be used for permission slips, newsletters, etc.

I explained to Tomas that he must take the concertina file to school each day and bring it home again every night. Any notes, homework or handouts he was given had to be filed in it immediately after each lesson to prevent them from getting lost in his school bag or left at school! I then showed him how to empty the file each night. We talked through how we made the judgement about what should happen to each piece of paper. It if was needed for lessons the next day it could remain in the file, any homework sheets should be completed and returned to the file and some papers would need filing in the ring-binders for later reference and revision purposes.

Independence

The aim eventually was to have Tomas apply the strategy independently. Direct explicit instructions and plenty of practice are often all that is required to help children learn basic oTomas filing paperwork in a concertina filerganisational or other skills. This approach can be particularly beneficial for a child with organisational difficulties although it is appropriate and useful for most children.

One year on and I am delighted to report that the system seems to be working!  With lots of practice and the support of his teachers, Tomas can now collect, sort and file all his own paperwork from school. Now I just need to apply the same rigour to my own filing system!

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Organisational skills for children with SEN

The phrase ‘special needs’ is a very generic term. Children with special needs are not only different from their so called ‘normal’ peers but they are also different from one another. Each child with special needs presents with a unique profile of strengths and weaknesses.

Organisational skills

A lack of organisational skills is the one challenge that the majority of children with special needs face. Coats go missing. Books and lunch boxes are forgotten. Hours are spent each month searching through the lost property box at school looking for gloves, scarves, gym kit and jumpers.

Organisational skills are a challenge for most SEN children because they have limited and inefficient internal structure. They are generally unable to organise their belongings, prioritize their actions or utilize their time efficiently to meet deadlines.  They also struggle with temporal (time related) concepts so they have difficulty assessing, for example, how much time it takes to get ready for school or finish homework.

Daily struggles

These organisational difficulties can put incredible strain on a family. As a parent of an autistic boy I know how frustrating it is when your child has organisational difficulties. I’m also aware how upsetting it is for Tomas to be constantly scolded and reprimanded for behaviours that are mainly out of his control. Tomas does not forget things because he is lazy or unmotivated. He has a neurological condition that means he struggles on a daily basis to make sense of the world we live in.

School morning organisation

Getting ready for school in a morning is a real test of organisational skills for any child. For a SEN child like Tomas the morning routine can be a source of extreme anxiety. There’s so much to remember – homework, lunch boxes, gym kit. Parents are also under pressure to leave on time and ensure that everyone has the right equipment for the day ahead.

Like many SEN children, Tomas is extraordinarily visual. He needs to see things in order to remember and organise them. If things are out of sight they are out of mind. Tomas’s visual strength was one of the sources of inspiration for TomTag (that’s why it’s named after him!). As TomTag clips easily to any school bag it is always to hand and the problem of misplacing the list is avoided.

Confidence and independence

Learning to pack a bag for school sounds simple but it requires skills and self confidence. Using TomTag as a prompt, Tomas has been able to learn over the last few years how to pack his school bag for himself. The fact that he is now able to pack independently for high school is a real testament to the success of TomTag. By giving him a consistent external tool to use he has learnt to overcome his minimal internal structure.

Teachers and parents benefit from children learning to pack a school bag independently. Fewer items are left in the infamous lost property box, morning routines are less stressful and for children like Tomas they are not only ready for school but have acquired important organisational skills which will pay dividends later in life.

Recommended products:

  • Back-to-School Toolkit

  • I Can Do It Brush My Teeth Mini Kit

  • I Can Do It Learn At Home Kit

  • I Can Do It Pack My Bag For School Kit

  • I Can Do It Self Care Skills Kit

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

  • I Know What To Expect At Home Kit

  • Learn At Home Sticker Pack

  • My School Kit Sticker Pack

  • Organising My School Bag

  • School Morning Routines