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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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Transition to secondary school for autistic children – 10 tips for smoothing the move

mum hugging boy in school uniform on secondary school offer day

“I’m feeling worried about eating in the canteen.”

“I am concerned that the lessons are going to be a long time.”

“I worry about wearing my blazer all day.”

These were some of the worries my autistic son Tom had when he was moving from his beloved small and familiar mainstream primary school to a much larger secondary school.

The move from primary to secondary school is one of the major transitions in a child’s life. All children are likely to feel some level of worry about this move but for many children on the autistic spectrum, who crave stability and predictability like Tom does, this transition can be particularly difficult.

Secondary school transition issues

Like many children with autism, Tom has anxiety about the unknown and finds it difficult to think flexibly. He felt safe and secure with familiar routines established in primary school. Not being able to predict what might happen in his new secondary school and the thought of dealing with change and different rules was a real worry to him.

As a parent, my worries were mainly around his lack of social understanding, his communication difficulties, and his sensory challenges.

How would he:

  • cope with the many new social situations he would encounter in secondary school?
  • manage his feelings and emotions when things didn’t go as planned?
  • deal with the increased sensory demands of his new environment? 

Preparation is key

Every child with autism is different so a ‘one size fits all’ approach to transition is therefore not going to work. It’s vital that transition planning should be personalised to each child. By preparing your child as much as possible beforehand using some of the tips we’ve listed below, we hope you’ll be able to make those first days and weeks in the new school a lot less worrying for you and your child.

Extracts from Tom’s transition to secondary school booklet
Extracts from Tom’s secondary school transition booklet

Top 10 transition tips

Tip #1

Arrange for your child to visit their new school several times before they start and at different times of the day e.g. lunchtime, breaktime and during lessons. Tom made frequent, short visits which helped make his new school more familiar to him and took away some of the worry he felt about eating his lunch in the canteen.

Tip #2

Make a “My School transition booklet” which your child can keep and use as they need in order to reduce anxiety.

Tom’s booklet included a map of the layout of the school, photographs of key staff (particularly the teaching assistants that were going to support him) and photographs taken of him in the important places, like the school canteen, main hall, classrooms and a safe place for times of stress.

A photograph of Tom on the stairs in the school corridor with his written note of the correct corridor etiquette

A photograph of Tom on the stairs in the school corridor with his written note of the correct corridor etiquette – “walk on the left hand side so we don’t get squashed and we can let other people pass” was a simple inclusion in the booklet but meant that he knew what was expected of him when the corridors filled with students.

Tip #3

Establish a link with a member of staff who can act as a mentor and home-school liaison. Set up a home-school book to pass on information about any worries/concerns or any relevant developments at home.

Tip #4

Create a personal profile written with the help of your child to include all the information new staff should know about them. Tom’s profile mentioned his need to have frequent movement breaks and his worry about the long lessons.

Tip #5

Get used to a homework routine in advance of the new school start. Start simply with a 10-15-minute task at a regular time each evening in a quiet environment.

Tip #6

Make a visual timetable showing the school day to make lesson order & break times more predictable. The TomTag School Timetable kit is ideal for creating portable and personalised timetables for your child without the hassle of printing, laminating or Velcro!

Tip #7

Practice the journey to and from school, making sure your child knows the location of bus stops, road-crossings, meeting points or anything else significant on their journey.

Tip #8

Familiarise your child with their new school uniform and deal with any irritating seams or labels. Tom practised wearing his blazer at home so that he got used to how it felt and was also told he could take it off during lessons.

Tip #9

Practice packing the correct items for school. The TomTag school bag packing checklist would be perfect for this!

Ask your child’s current primary school to work on preparing your child for the transition by including activities around organising and managing their own items at school.

Tip #10

TomTag feelings notebook with example page filled inSet aside time to discuss your child’s worries and concerns about the transition. Encourage them to write down or draw about any concerns they have about moving to their new school. Remind them of relaxation and self-help techniques they could use if they are anxious. The TomTag Feelings Notebook is a helpful place to record worries and concerns. 

Transition to secondary school resources

The National Autistic Society website has some useful information about transitioning to secondary school.

Leicestershire Autism Outreach Service also have a comprehensive transition resource pack that’s well worth checking out. 

  • Back-to-School Toolkit

  • I Can Do It Pack My Bag For School Kit

  • I Know What To Expect At School Kit

  • cover image product feelings notebook

    My TomTag Feelings Notebook

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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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Surviving Christmas with help from TomTag

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

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

my daily routineJust another day

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

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

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

decorations and christmas symbolsDecorations

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

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

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

Social expectations

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

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

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

Presents

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

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

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

Relax!

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

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

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

  • Christmas & Birthdays Sticker Pack

  • Christmas Survival Guide

  • I Know What To Expect At Christmas & Birthdays Kit

 

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TomTag Feelings tag-o-meter

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

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

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

Let’s get started

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

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

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

What’s different

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

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

Get down to work

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

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

 

How was that?

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

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

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

What happened there?

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

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

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

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

Just saying

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

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

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

Let’s be friends

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

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

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

  • Back-to-School Self-Talk Prompt Sheet

  • cover image feelings notebook extra stickers

    Extra sticker sheets for Feelings Notebook

  • Feelings & Emotions Sticker Pack

  • Feelings Bundle

  • Feelings Tag-O-Meter

  • I Can Do It Manage My Feelings Kit

  • I Can Do It Share How I Feel Mini Kit

  • cover image product feelings notebook

    My TomTag Feelings Notebook

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Autism – understanding and managing anxiety

We all experience stress during our daily lives but for many autistic people the experience of stress can feel very intense and cause severe difficulties.

stress

Like many young people with autism, my son has been experiencing anxiety related to an overly-literal understanding of what it means to follow school rules and when he is faced with an unplanned change both inside and outside the school setting. He has a very narrow view of what it means to be in the correct uniform or be on time for lessons or appointments. When he is feeling stressed he will rock on his feet, pace the floor and ask repetitive questions. In these situations, he finds it difficult to respond to any reassurance.

Together with his Speech and Language therapist  (‘SLT’) and Occupational therapist  (‘OT’) we have been using some strategies to help him. We have taught him that the concept of feeling overwhelmed means either too many feelings all at once or a very strong reaction to a situation. He can now use this word to express how he is feeling. He has been taught a format for identifying the worry and setting out actions to help resolve it. The actions relate to what he can think, say or do to make things better. We’ve taught him the phrase self talk and he is beginning to understand what a trusted adult would do or say to him  in that situation to help and to use this as self talk. We are sharing this work with his teachers and support staff to ensure a consistent approach to talking about worries and solutions.

On the suggestion of my son’s OT we are trialling a tactical breathing programme developed for the military and emergency services to use in times of extreme stress. We wanted to have activities that were discreet and applicable to the classroom environment. Tactical breathing is a great strategy as no one needs to know that he’s doing it and he can use it to prepare for stressful situations as well as once he is feeling stressed.  We’ve incorporated tactical breathing into an anxiety busting resource for him called the 3 O’s- Overwhelmed, OT, OK.

One of the resources we’re using is a simple free app called ’Tactical Breather’ which I’ve downloaded onto his phone so it’s readily to hand for stressful situations. I’m also encouraging him to use his phone to record worries and solutions so that these can be kept and built up to form a ‘library’ of helpful strategies for managing situations.

It is hoped that over time and with continued support in this area he will become more able to self soothe and manage his anxiety. Incidentally, studies have shown that stress levels of mothers of kids with autism are similar to that of combat soldiers. Perhaps I should download that app for myself too!

Recommended products:

  • Back-to-School Self-Talk Prompt Sheet

  • Back-to-School Toolkit

  • Feelings & Emotions Sticker Pack

  • Feelings Tag-O-Meter

  • I Can Do It Learn At Home Kit

  • I Can Do It Manage My Feelings Kit

  • I Can Do It Share How I Feel Mini Kit

  • I Know What To Expect At Christmas & Birthdays Kit

  • I Know What To Expect At Home Kit

  • cover image product feelings notebook

    My TomTag Feelings Notebook

  • School Morning Routines

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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