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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

 

  • 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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TomTag Life Skill – staying safe

With this month playing host to Safer Internet Day we’ve some tips on helping our kids stay safe in the home, looking at both online and physical safety.

Safe online

safe online image

With an almost daily diet of stories about the negative impact of the internet and new technology on children and young people, it’s easy to forget the positive aspects: the ability to learn, to connect with others, to be creative.

Safer Internet Day (February 11th) offers an ideal opportunity for parents and carers to start a conversation with their children about online safety. By teaching children to understand and navigate the risks you can help them to have a safer and more positive experience online.

Start by reading these tips for parents from the UK Safer Internet Centre and explore the many other fantastic resources on the site.

This article from the Guardian takes a interesting look at how the internet can be a great learning tool and includes some really simple ideas for changing how we approach our children’s use of it.

Drawing up a family agreement that all the family sign up to is a useful way to help everyone make better decisions and display appropriate behaviour. Here’s a great example from Digizen.org.

You can also find a wealth of information and advice on the subject from CEOP’s ThinkuKnow website.

Safe at home

Of course, we’ve all been consciously protecting our children from harm from the moment they were born but we have a responsibility to teach them the skills to keep themselves safe too.

Talking about potential dangers as part of everyday conversation and using games to teach what to do will really help to prepare your child for emergency situations without scaring them.

Play the ‘What if’ game

What if … the smoke alarm sounded?

What if … you cut yourself badly?

What if … someone came to the house when no-one else was home?

You’ll get a feel for how your child would react in a real emergency and can guide them to how they might deal with it.

Using some of the blank stickers you’ll find in each TomTag sticker pack, draw or write a list of safety rules and apply each sticker to a blank button. Put the buttons into a TomTag holder and hang or stick it up (eg. on the fridge) where it will be seen every day.


Hold a scavenger hunt

Once you’ve played the What If game and discussed ideas about how to deal with different situations, does everyone in the house know where to find the things they might need to deal with an emergency? Where’s the first-aid kit, keys to open doors, fire blanket, emergency phone numbers? Give each child a TomTag with some items on it that they need to find and let them race to be the first to find everything on their list.

Teach your child how to use what’s in the first aid kit too to treat minor injuries. The British Red Cross have a great web resource to help children aged 6-11 learn life saving first aid.


Make an escape plan

Every household should have an emergency escape plan in case of fire. Hopefully you will never need to use it but having a plan will prevent delay and help you to escape faster if you need to. Anyone can ask for a free Home Fire Safety Check from their local fire service.

Don’t forget that a weekly test of your smoke alarm is the simplest and easiest way to help prevent fire emergencies.

Give your child a clip-board and pen and let them pretend to be a safety inspector. Ask them to look around the house for safety features and hazards and let them help you fix any deficiencies.


 

Know your numbers

Make sure everyone knows the number for emergency services and try role-playing a call so that they know what they might be asked.

Teach children their home address and telephone number so that they can give it if they need to call the emergency services (also useful if they get lost when out of the house!).

Keep a list of names and numbers of friends, neighbours, family doctor, etc. by the door or telephone in case of emergencies, particularly if your child is old enough to be left at home alone.

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Going Away – help with planning and preparation

Does your child get anxious about school trips, days out or family holidays?

My son has autism and any trip away from home can be a challenging prospect. This is because like many children with autism, he struggles with routine changes, sensory issues and an intolerance of uncertainty.

However, over the years we’ve learnt that with planning and preparation, days out and holidays can be enjoyed rather than endured. We’d like to share our top tips in order to help other parents and carers facing similar issues.

Plan, plan and plan again! 

  • Try searching for ‘autism friendly’ holidays or days out. The National Autistic Society has a list of companies and organisations who hold an Autism Friendly Award.
  • Contact hotels or venues to explain your circumstances and your child’s needs – if they don’t seem supportive then look elsewhere.
  • Check out a destination or venue in advance. If possible make a pre-visit or get a map and consider any potential trigger areas and quiet zones you could head to in case of a meltdown.
  • Practice unusual events such as packing and unpacking a suitcase. A packing checklist is a great way to involve your child in holiday preparations and encourages independence.
  • Use visual schedules to show your child what to expect on the holiday, give structure to their day, and help with transitions between activities.
  • Social stories are a useful way to explain what ‘going on holiday’ actually means. Depending on your child’s language ability, you can discuss what concerns they have about the holiday or trip and then work with them to come up with a list of possible solutions.
  • If you’re travelling by plane, check the airport website to see if they offer any visual guides or booklets. Manchester and Gatwick have excellent guides and many UK airports now offer autism specific page on their websites.  You may also be able to request a wristband or lanyard which entitles you to use the fast-track lanes at security or access quiet waiting rooms. Alternatively, you might want to make your own visual schedule for the airport to explain the process.

Hope for the best, prepare for the worst

However well you plan there’s no guarantee that unexpected events , such as delays won’t occur. It’s a good idea to have a ‘distraction’ pack to hand. A bag containing snacks, music or noise-cancelling headphones, games or entertainment devices to head off any potentially challenging behaviour.

Consider a form of identification such as a card or ID holder attached to your child’s clothing (such as a belt loop) just in case they wander off or become lost. This should give their name, your contact details and any medical requirements. Even if your child is capable of providing this information themselves, in a new and stressful setting this will be much harder.

Helpful resources

We used the kit I know what to expect going away to make the checklists and schedules shown.

The National Autistic Society have some helpful fact sheets with information about school trips and going on holiday.

 A really  informative blog Autism and UK airports – improving assistance for passengers with autism  has a brilliant summary of what’s  available at UK airports.

  • I Know What To Expect Going Away

  • Staying Away From Home Sticker Pack

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The Challenge in Challenging Behaviour

If someone cannot tell you how they feel they will try to show you how they feel.

Language is one way to convey emotion, but of course it is not the only way: sign language and symbol communication systems such as TomTag feelings tags are equally as effective. People will express their feelings through their behaviour when they either 1) do not have a communication strategy to hand, or 2) when they themselves cannot identify the feelings they are experiencing.

You will have heard the phrase challenging behaviour. And you will have come across the common misconception that it should be stamped out. The behaviour is communication, we do not want to stamp that out.

Consider what the challenge actually is:

  • The person exhibiting the behaviour is being challenged by a problem in their own life.
  • The challenge they are setting you is to work out what that problem is and to help them solve it.
  • Their behaviour is simply the communication tool they are using to alert you to the problem.

When faced with behaviours that challenge you, if all you do is try to prevent the behaviour you will not escape the challenge. Suppose the behaviour I am using to express my difficulty with the world as I find it is to hit my head against a wall, and you put a helmet on me to stop this from hurting me. Although my head is safe you have silenced my communication, so I will need to find a new way to express the difficulty, perhaps I will bite myself, or hurt you. I am not doing these things maliciously, I am just seeking to be understood.

Helping me to recognize and then express my emotions using communication strategies such as signs or symbols gives me a way to express my difficulties clearly to you without needing to resort to challenging behaviour. You need to ensure these communication methods are as effective as behaviour for me, I want to be sure that I get as much help when I point to the symbol for ‘sad’ as I used to get when I expressed ‘sad’ by hurting myself.

The word challenge is right. It is a challenge to work out what someone else is communicating to us, especially when we are trying to do that for someone who doesn’t communicate using traditional communication methods or for someone who experiences the world in a different way to us, due to sensory differences or neurodiversity.

On my course Exploring the Impact the Senses have on Behaviour, we do just that! When behaviours stem from sensory causes they require a different response from behaviours whose origins are elsewhere. Behaviour triggered by the senses can be low level niggly gripey grumpy type behaviour or it can be big explosive behaviours such as biting, kicking and lashing out.

When explosive sensory behaviours occur hormones flood the brain and a person loses access to their ordinary channels of communication; language, signs and symbols no longer work. On Exploring the Impact the Senses have on Behaviour we look at how we can communicate in a sensory way to support that person. We look at how practices such as externalizing emotional regulation and using symbol support (e.g. TomTag) to express emotion can help avoid crisis situations. We also do the sensory detective work to better understand the triggers for these behaviours and how we can avoid them.

Connect with Joanna to learn more about her remarkable work and brilliant, interactive, training courses.

TheSensoryProjects.co.uk

Facebook @TheSensoryProjects

Twitter @Jo3Grace

Linkedin Joanna Grace

  • Feelings & Emotions Sticker Pack

  • Feelings Tag-O-Meter

  • I Can Do It Manage My Feelings Kit

  • I Can Do It Share How I Feel Mini Kit

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Understanding feelings and emotional intelligence

Emotional Intelligence – what is it?

Emotional intelligence is defined as the ability to be aware of and recognise our emotions, understand and express them, and to realise how they affect those around us. Emotional intelligence is known to be a key factor in success in life, quality of relationships and overall happiness.

What type of emotions and feelings do we have? 

Anger

Angry, irritated, mad, furious, upset


We can get angry for lots of different reasons. It can happen when we feel threatened or offended or when we can’t have something that we really want. Our children will often display anger and challenging behaviour when they are finding something difficult, confusing or uncomfortable but are unable to communicate the problem to us in other ways.

Sadness

Sad, unhappy, disappointed, depressed, hurt


Emotions themselves are not ‘good’ or ‘bad’. Everyone will, and should, experience being unhappy, down or disappointed at times. Learning how to recognise and respond to feelings of sadness in a positive way is good for our emotional health.

Fear & anxiety

Anxious, nervous, frightened, scared, tense


Fear can be a useful emotion when it stops us doing things that might be dangerous or bad for us. It works against us when it stops us doing important things that we need to do or when we are unnecessarily worried or fearful about what might happen to us. Being overly anxious affects our ability to focus, learn, and achieve things.

Happiness

Calm, satisfied, happy, relaxed, glad


When a child is happy, calm and relaxed they will be more able and willing to focus, listen, learn and communicate. We can help them by learning what they need and would benefit from in their physical and social environments in order to achieve that status.

Excitement

Excited, antsy, energetic, bouncy, aroused


When children have difficulties communicating, it’s easy to misinterpret their behaviour and wrongly identify the cause. For example,  a child with autism may display repetitive motor behaviour such as flapping or spinning but they may need this sensory stimulation to deal with extremes of excitement and arousal as much as they do when overwhelmed by other emotions.

 

How to use a TomTag feelings tag-o-meter to develop the skills for good emotional intelligence

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TomTag tips and tricks

Tips and tricks when using TomTag

We know that one of the things you really appreciate about TomTag is it’s simplicity and easy of use.

That means that sometimes we forget to shout about some of the more subtle design features we included. We’ve also picked up some interesting ideas along the way from our own experience and that of our customers and we’d love to share them with you.

So, here goes!

Locked in

tag lock info

Ever noticed those ridges at the top and bottom on the reverse of each tag but never been sure what they’re for? That’s our tag lock feature!

Simply line up the back of one tag with the front of another and squeeze together, making sure that the raised ridges on the back sit inside the rectangular areas at the front as you do so. Repeat with the rest of your tags.

Particularly helpful when used with our I can do it pack my bag for school set to prevent tags flapping or moving around too much when being carried on a school bag.

We’re here!

features website nameNeed some spare buttons or want to try a new sticker pack but can’t remember the website address? It’s right here, on the back of every tag!

No need for Google – just turn over a tag.

 

Heads or tails

features button turnThe natural and obvious way to place TomTag buttons in a buttonholder/tag is with the flat, stickered side facing upwards. After all, we want to see those symbols, don’t we? What about once the task or activity shown in the symbol has been completed?

A very visual strategy can be achieved by popping out each button, turning it over and placing it back in the same space in the holder to indicate that the task has been done before moving onto the next item on the list.

 

Rewards

features rewardsThink TomTag is just for making lists? Think again!

Use a tag, some blank buttons and star stickers to encourage positive behaviour or to incentivise a reluctant child. Give a star button to pop in their tag each time they display the required behaviour or complete a set task and perhaps agree a treat they will receive once their tag is full.

 

Take it away

customer oct14 2You’ll already know what the small hole at the top of each tag can be used with our attachment loops to join tags together or hang individual tags in handy places.

You can make TomTag even more portable by using that small hole to attach a keyring, belt clip or lanyard to one or more tags so that they can be carried on the person. This is a really useful idea when using TomTag to promote good behaviour at home or school – handy for teachers or parents to carry with them so they can quickly show the relevant symbol or list as a reminder.

Here’s a picture one of our customers sent to us – she’s a very busy bee and likes to know she can always check what’s happening next during the day, wherever she is.

We’ve been thinking for some time about introducing lanyards with our TomTag logo – what do you think? Would this interest you?

Over to you

What would you add to this list? Have a novel way for using TomTag? Let us know and we’ll share your ideas too.

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The joy of jigsaws – 5 great benefits

With winter now well and truly on it’s way, we’re going to be spending a lot more time indoors.

What can you do to keep the kids entertained without the whole day turning into a tech fest? Simple…..

Getting started on the underground

Just choose something that’s fun, makes kids think and gives them a tangible reward at the end of their endeavours. You probably already have one of these boredom busters lurking somewhere in the house! On a recent wet weekend when helping my autistic son complete a 500 piece puzzle of the London Underground map, we re-discovered the joy of jigsaws.

The joy of jigsaws – 5 great benefits

1. COMMITMENT

Doing a jigsaw puzzle uses a number of cognitive skills including reasoning and problem solving. Even the simplest puzzle requires planning and thinking about where and how the pieces fit together which leads to a commitment to solving the problem and completing the task.

2. CONCENTRATION

When working on a jigsaw puzzle we’re using memory, critical thinking and usually a lot of patience! We need to remember the shape of pieces we’ve already tried, use strategies for sorting pieces into similar types, shapes or colours and keep trying until we find exactly where every piece fits. That all requires a great deal of concentration.

3. COORDINATION

Picking up pieces and having to slot them together without breaking up the rest of the puzzle can be a complex task. Puzzles require intricate coordination of hand and eye movements and can also help improve children’s understanding of colours and shapes.

Picking up the pieces

4. CONVERSATION

The subject of the puzzle can spark conversation around the topic. A number or alphabet puzzle can reinforce learning about letters and numbers. My son is very keen on all forms of transport so the Underground puzzle prompted him to talk about related topics.

Tackling a jigsaw together is also a great social activity and gives the chance to talk and spend time together. Keeping a puzzle on the go in the living room or kitchen is a great idea and the whole family can do a little bit whenever they fancy. Especially good for keeping the channels of communication open with teenagers!

5. COMPLETION

jigsaw 3
Finished – well almost!

Solving a jigsaw puzzle gives a real sense of satisfaction. You will have practised goal-setting and patience as well as a number of different problem-solving strategies. Your brain will have had a fantastic work-out so it deserves to celebrate! It’s just a shame our puzzle had a few pieces missing. Still, another valuable lesson learnt – life doesn’t always fall neatly into place!

 

TOP TIP: Charity shops and car boot sales are both fantastic places to look for good value jigsaws. Return them to a charity shop for someone else to enjoy once you’re finished and the charity benefits again too.

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Are you getting enough exercise?

Between us this year we have completed a triathlon and a 100k (10 x 10k) challenge.

We’re not athletes, gym addicts or super-women. It all started a few years ago when we challenged each other to enter a Race for Life 5k run. It was hard to get started but several months and lots of huffing and puffing later, we did it. The physical benefits of the exercise were obvious – we’d gone from barely managing a 10 minute jog to completing a full 5k though we weren’t going to break any land-speed records!

As busy parents we’d previously found it difficult to slot in any sort of regular exercise into our days, putting the needs of our children and families first rather than our own physical health. Although it was great to see the physical changes, what really got us both hooked were the powerful psychological benefits.

Exercise really does help to clear the mind – it gives us time away from other distractions to think more clearly and order our thoughts. If I’ve been struggling to get my head round a particular issue, heading out for a jog will often prompt new ideas to flow as well as blowing a few cobwebs away.

 

Setting a goal or signing up for a challenge is a great way to force yourself to keep to a regular regime and gives you a reason to take time for yourself. It’s essential for our mental health and self-esteem to remember that we are important too. Making a commitment to exercise commits us to some ‘me’ time – time away from children, housework and work worries.

I often hear people say “Well done, I couldn’t do it”. I tell them that’s what I used to say too. Go on – challenge yourself today!

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When is a child old enough to walk to school alone?

Most of us parents will remember walking to primary school on our own at some point but it’s an increasingly rare sight these days.

Practice the journet

There are actually no laws or official guidelines around age or distance of walking to school so it’s down to each of us to decide when our children are ready.

As well as the obvious health benefits, walking to school can help build independence, responsibility, safety awareness and social skills.

The biggest fears amongst parents about letting their children walk to school alone are of traffic and stranger danger. The Living Streets campaign tries to help parents understand the reality of these risks and explains that by protecting children from them they could be unwittingly harming their long-term health and well-being in other ways.

This Living Streets and Parentline Plus Walk to School report states that “Giving children the opportunity to walk to school not only reduces the risk of obesity but helps them develop independence and teaches them important life skills such as road safety and route finding”.

Start small

Build up to walking all the way by accompanying your child most of the way and letting them go the last bit by themselves. Gradually start making that last bit longer whilst they (and you!) gain in confidence until they’re doing it all themselves.

Safety in numbers

Try pairing up with other parents and taking it in turns to walk with the children to school first and then build up to the children walking together without any of you.

Road safety

Use this transition time to give reminders and tips about crossing roads and traffic awareness. If you always make the decision when it’s safe to cross, your children won’t learn what to look for to make safe decisions themselves. Talking through likely scenarios will help build their confidence to know what to do when they’re on their own. Do you know your green cross code?

Stranger safety

Agree an easily remembered code word or phrase to use in the event that someone else has to pick up or meet your children. Tell them to ask for this code word if anyone approaches them offering a lift, whether it’s someone they know or not.

October is International Walk to School Month

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