Toilet training a child is never straightforward. For many autistic or additional needs children the process can often start later, take more planning, and may take longer. But it will be worth the effort in the long run.
Establishing a routine is a huge step in helping your child become toilet trained.
This record sheet ( available as a download using the link below) can help you develop a toilet routine for your child. Recording your child’s wee and poo habits for 3 ‘typical’ days helps you to identify their wee and poo pattern so you can encourage them to sit on the toilet at around that time. Your notes may also help you spot any signs of constipation that could make toilet training unsuccessful.
Let’s get started
Here is a guide to help you fill in the record sheet;
Write down the time your child has their meals, drinks, and snacks. This helps you track how long it takes between when your child eats or drinks and when he or she is wet or soiled.
It may be helpful to write down what your child drinks. You may see a pattern with the type of drink he or she has and how often or quickly they wee afterward.
Time of wee / Time of poo
Check your child’s nappy or pull up every 30 minutes for wetness or soiling.
Write down the time that any wee or poo is passed
This will help you identify your child’s wee and poo patterns. Use this information to schedule toilet time.
Type of poo
Write down the number from the Bristol Stool Chart that best describes the poo—see pictures in the Choose Your Poo table on the left.
Record the size of the poo passed as small/ medium or large
Types 1,2 and 3 suggest constipation. You should contact your child’s doctor for further advice if your child passes these types of poos.
Write down any behavioural changes you notice before or after your child has passed a wee or a poo. For example, running and hiding, jiggling around, crossing their legs, or clutching at themselves.
Recognising any behavioural changes will help you decide when is a good time to encourage your child to sit on the toilet.
This week is Children’s Mental Health Week, and the theme is Growing together. It is the greatest of privileges as your mum to have watched you grow and develop into the young man you are today. As we celebrated your 22nd birthday this week and welcomed you into the business it seems timely to reflect on just how much you have grown emotionally over the last 2 decades and let you know how proud I am of you.
It’s easy to see how you’ve grown physically – at 6 foot 2 you tower over me! But what do I mean by your emotional growth and how do we measure it?
Your emotional growth is all about your feelings and how you have got better at understanding, communicating, and managing them. Being able to stay calm when someone annoys you, dealing with your disappointment when your plans have changed due to the pandemic, sharing your worries and feelings with me. These are all examples showing how much you’ve grown.
Understanding what others are thinking or saying and finding the words to tell me how you are feeling is difficult. It can be tricky for all of us. When you were younger you couldn’t tell us how you were feeling so you showed us. Not with your face or words but with the only way you could communicate with us –through your behaviour.
As a toddler you chewed your clothes, span manically, lined up your toys and tried to run away. Your behaviour was triggered by changes to your routine, sensory overload and sheer frustration in not being able to tell us what you wanted. We learnt that patience, keeping calm, structure and routine and using simple, clear language helped you deal with the ‘hostile ‘environment you perceived around you.
As a young boy, you worked hard on understanding your own and other people feelings. Do you remember the feelings book we made together to teach you the words you needed to recognise and share your different feelings? This helped you and I become first-rate feelings detectives!
Having the words to describe your feelings helped you when you were a teenager. You told me about how you struggle with ‘face and voice tricks’. Your words for describing how you misinterpret people’s gestures, facial expressions, and tone of voice – often thinking they are angry at you or teasing you when they are not.
As a young man, you have become better and better at talking through your worries with me and using your self-talk strategies to help silence the negative thoughts and feelings in your mind whirring round like a stuck record.
Being able to help you develop and grow emotionally has been the most demanding yet rewarding part of being your mum. It has made me look at my own feelings and emotions. I had to understand what feelings mean to me before I could explain them to you.
As a family, we learnt how best to help you understand what you were experiencing. We have been your greatest cheerleaders, encouraging you to try new foods, even a Brussel sprout! Giving you the confidence to try new activities and experiences such as riding your bike, learning to ski and even taking a flight on your own.
Every time you try new things, learn from tough situations and bounce back from disappointments it is an emotional growth spurt for us all.
Christmas can be a magical and exciting time but for many autistic children like my son Tom, the festive period is anything but wonderful.
Tom struggles with changes to his routine, worries about not understanding what is happening and why his usual activities and food are different. When he was younger, if visitors came to the house or we visited family and friends he’d become confused and unsettled as he didn’t know what was expected of him. He was often tearful, frustrated, and distressed.
We tried lots of things and now we know what to do to help Tom and our family have a more enjoyable and relaxing Christmas. As he turned 21 this year, Tom shares 21 of his favourite tips to help you and your family prepare for an autism-friendly Christmas.
#1: Decide what’s the best way to ‘do’ Christmas for YOU and YOUR family.
Making a plan in the following way helped us:
✍🏻Grab a notebook and pen and have a think about the whole upcoming Christmas period.
📝Make a list with four columns headed Achievable, Desirable, High Risk, Impossible
🤔Think about what is planned or expected over Christmas and place each activity under one of the four columns
👏🏻Don’t aim for 💯%- if you can manage most of the achievable, one or two things in the desirable column and come through everything in the risky column you should rightly feel proud.
Don’t give up hope if nothing goes to plan. In our experience, over time many of our risky column activities became achievable.
#2: Make a personalised visual ‘All about Christmas ‘guide.
Showing all the different things you might do at this time of the year this guide could include Christmas objects, Christmas food and activities that only happen at Christmas e.g., meeting Father Christmas or pulling Christmas crackers
You could make one together like mum and I did with drawings. A photo collage, Christmas scrapbook, or pictures of your family celebrating Christmas also work well.
Like many children with autism, I tend to forget social information, so a permanent visual guide was a great way to remind me what Christmas looks like.
#3: Take time to talk with your child about things that may be worrying them
I was worried about not having my usual breakfast – jammy toast and hot chocolate on Christmas day.
This might seem a little thing to worry about, but it was a huge feeling for me. Mum explained to me that I would have my usual breakfast and that made me feel better.
#4: Make realistic plans for shopping.
Mum tried to avoid taking me shopping during Christmas. The noisy crowds, strong smells, and bright lights in the shops made me feel confused and worried. If she couldn’t find a babysitter, we used to go at quieter times of the day with plenty of snacks to distract me!
Online shopping now makes things much easier
#5: Talk about social rules and different expectations that people might have around Christmastime.
When I was younger, having visitors to my house or going to visit family and friends over Christmas made me feel worried. I didn’t like being out of routine and felt anxious about what I should say and do. Practicing what to say when meeting people and having pictures to remind me what would happen and how I should behave, for example saying hello, please, and thank you really helped.
#6: Talk to your child’s teacher so you know what different things they might be doing and when.
Mum used to have a meeting with my teacher and support assistant to find out what activities were going to be happening and how best to help me.
By letting us know when there would be changes to my routine, for example, doing Christmas crafts instead of my usual lessons or practicing for the carol service I could prepare myself for the changes and didn’t get as anxious.
Planning for the Christmas party so that I could have my favourite drink and a quiet area to go to when things got too much also made me feel much calmer about going to the party.
#7: Make a list of special interest gift ideas that you can suggest to relatives and friends when they ask what presents they can buy.
When I was younger, I didn’t get excited about getting toys as presents. But I loved getting things about what I was interested in, for example, lorries and trains. Activities based on my special interests were also good ideas.
Among my favourite Christmas presents were a pillowcase with trains on, a trip to the railway museum and of course getting lots of Eddie Stobart lorries!
#8: Make sure any visual schedules are updated to show any changes to routine or special Christmas events.
Sudden changes to my usual routine like a last-minute practice, craft activity or even something small like moving to a different classroom or popping to see a friend can upset me and cause me to worry. It’s always better to give me as much warning as possible of any changes so I can prepare and cope with them.
It can be exhausting to keep up with all the different things that are happening. A TomTag visual timetable really helps to show me what is happening and when. It’s perfect for use at home and school.
#9: Involve your child in deciding where the decorations should go.
I get worried when there are unexpected changes in things around me. So, if Christmas decorations suddenly appear at home or school, it can shock me. Involving me in deciding where the decorations go and letting me help decorate the Christmas tree can help me feel less overwhelmed.
It’s also important to let me know when the decorations are being taken down too. It’s less stressful for me when there is a warning and a reason given.
#10: Keep sensory armour to hand for trips to the shop, parties, and other festive events where there might be sensory overload.
Loud music, twinkly lights, everything and everyone looking different can be overwhelming for me.
Sensory armour can help and includes:
🎧Headphone to cut out some of the noise and sound. I can also listen to my favourite music to help reassure me when things get tricky
🧢A cap to help shut out some of the flashing lights
🕶Dark glasses to reduce light intensity.
#11: Let your child wear their Christmas costume or party outfit around the house
When possible, buy or make your child’s Christmas costume or party outfit early.
Let them wear it around the house for say, 5-10 minutes over a few days to help them become comfortable with how it feels.
I don’t like the feel of any clothes made out of wool or anything with a label in it as it feels scratchy on my skin. Fancy dress costumes are also a no-no. I much prefer to wear my own clothes. I don’t mind wearing a Christmas hat– if the label is cut out and I don’t have to wear it for a long time – just long enough for mum to get some photographs is usually ok!
#12: Use an advent calendar or other visual to prepare for and understand the countdown to Christmas.
I used to find traditional advent calendars quite fiddly. When I was younger, we had a large fabric Christmas tree with 24 large, numbered pockets. Each pocket contained chocolate that I could easily reach.
Other ways to make an advent calendar include a Christmas Book Advent Calendar – unwrap a Christmas book each day, little gift boxes filled with knick-knacks, or a treasure hunt with clues.
You can use TomTag to make a fun countdown too!
#13: Prepare your child for how to greet family and friends
Prepare for visitors and visits from family and friends by talking to your child about who they are going to see and how to greet them.
I spent lots of time practicing with mum how to greet people. Being hugged makes me feel uneasy so I learned how to shake hands with friends and family. I do love being hugged by my sister though!
#14: Discuss the escape plans that it’s ok for your child to use if everything gets too much for them.
It was so important for me to know that if things got too much for me there was a quiet space I could go to ‘escape’ Christmas. When I was younger I agreed with mum that I would show a red card when I needed some time out in the quiet space.
#15: Be prepared that your child might not be able to sit at the table for as long as would like (or maybe not at all).
Be upfront about this with your family and friends if you’re having Christmas dinner at their homes.
I’m happy to sit at the table now for my meal but often need to leave the table when I’ve eaten for a movement break. Knowing that this is OK and that I’m not going to be forced to sit at the table means I don’t get anxious. When I was younger, I had a favourite book or toy to keep me distracted during mealtimes.
#16: For children who won’t eat a traditional Christmas dinner prepare and freeze their meals in advance to reduce the workload on the day.
I used to be a very picky eater. This was because I don’t like changes. I liked things including my food, to be predictable. Having the same foods such as pasta, bread and chips meant I didn’t have to worry about new tastes or feelings in my mouth. I preferred to eat foods that I knew tasted and felt the same. I also avoided eating meat as this was difficult for me to chew.
My favourite Christmas dinner used to be chicken nuggets and chips – Mum always put some peas on my plate, just in case!
As I’ve got older my fussy eating has changed. I now love a traditional Christmas dinner and my favourite vegetable is broccoli!
#17: Playfully and patiently practice Christmas traditions
These could include receiving and unwrapping presents, pulling crackers, and wearing hats so that your child knows what to expect and can join in.
Here are some things that we did to help me understand what happens at Christmas:
Play wrapping games. Mum wrapped up some of my things – clothes, books, toys and I had to open the paper and find what was inside. We’d play a guessing game by trying to guess what was inside by the feel and shape of the parcel. We used to have something square, round and rectangular so I could also practice my shape names. Chocolate was always my favourite thing to unwrap!
Pulling crackers. We bought some cheap crackers and practiced pulling them, so I got used to the ‘bang’ sound and it didn’t come as a surprise. I got used to wearing the paper hat from the cracker and looking for the joke inside them.
#18: Think and talk about the sensory overload and extra social demands at Christmas parties.
The school Christmas party used to be very overwhelming for me. Loud music, everybody looking different and the expectation that I should be joining in with dancing and games.
These things helped the party be less stressful for me:
📝Using a visual schedule showing me what was going to happen
🤗Having a ‘buddy group of friends to help me join in
🕺🏻Practicing dancing at home!
🤫Making sure there was a quiet place for me to go to if things got too much.
#19: Some children may be overwhelmed by many presents all in one go. Try introducing gifts one at a time over the day or over several days.
Alternatively, adopt an advent style approach and bring out a small gift each day on the run-up to Christmas day.
On Christmas day, I used to stagger my present opening. I opened some presents in the morning and some in the afternoon. Often, we went on holiday at Christmas time so I would open most of my presents after Christmas once we were back home and in my own time. This worked well for me as I didn’t feel stressed about deciding what to unwrap and doing it all at once. I could enjoy opening my presents.
#20: Leave some areas of the house undecorated so there’s always a quiet place for your child to retreat to if they need it.
I liked having a Christmas-free zone to escape to when I got fed up with the flashing lights, glittery things, and loud music around the house. This decoration-free space helped me feel calmer when things got too much.
#21: Many autistic children don’t like surprises so it might help not to wrap presents up.
You could also just tell them what’s inside or use clear cellophane or plain paper for wrapping with a picture attached showing what’s inside.
When I was younger, it didn’t bother me to get a wrapped present, but I didn’t have the ‘surprise feeling’ you usually get before you open it. I didn’t really understand the idea of a surprise, so I had a mixture of wrapped and unwrapped presents.
I used to love anything to do with numbers so receiving a large pack of number cards one Christmas was a lovely surprise!
Tom and I would love to know any tips you have to make Christmas more autism-friendly?
Self-talk was key in helping Tom manage his back-to-school anxiety.
Self-talk is rehearsing silently something that you think someone you trust would say to you in a situation you find tricky or challenging. Being able to self-talk is useful as it is something a child can do to help themselves. It has been a game-changer for Tom as he can use this whenever he is feeling overwhelmed.
Let’s get started
You can use this Prompt Sheet to help your child develop self-talk to manage their back-to-school anxiety.
Here are our tips for using the sheet which is available as a free download using the link below:
Let your child know that lots of people are anxious about going back to work or school. This helps them feel that their worries about going back to school are valid.
Give your child the words to describe their feelings. Introducing and explaining the phrases ‘back to school blues’ and the ‘oh no feeling’ help them understand the emotion and feeling behind their back-to-school anxiety.
Ask your child to show you how strong their ‘oh no feeling ‘is. If they struggle with language try simple visual scales using either numbers ( 1-5) or the intensity of colours (green – red) to make it easier for them to rate their feelings. The TomTag feelings tag, a thermometer-style sequence of 6 feelings faces, is a good option to use.
Explain that their ‘oh no feeling’ is the right feeling but too big. Like a shout that needs to be shrunk to the right size – a whisper. The drawings on the Prompt Sheet are a good way to show this
Tell them that to shrink the ‘oh no feeling’ they should think of 3 good reasons why going back to school is ok and say these reasons to themselves when they feel the ‘oh no feeling’ starting
Imagine being able to send your child off to school without the usual dramas, panic, shouts, and screams over lunch boxes, PE kits or homework!
Anxieties over forgotten items can be avoided with a little preparation and practice.
When children have the skills to pack their school bag independently, they can start taking responsibility for their belongings without you having to remind them all the time. This also helps them at the end of the school day when they need to know what to bring home again.
Even the youngest or most disorganised child can soon get the hang of finding and packing everything they need for school, giving them a great sense of achievement too.
Visual checklists are an ideal tool to use when helping your child learn how to get organised and become more independent.
Find the right school bag
With so many bags to choose from it is important to find one that matches your child’s needs.
The main consideration is comfort.
• Does the bag feel good to wear?
• Do the straps feel sufficiently strong?
• When filled, is the weight of the bag evenly spread about?
Choose a sturdy bag that has multiple compartments and zipped pockets. Check that all the fastenings work cleanly and it is easy to access. If you child gets frustrated finding things or struggles with fiddly zips, opt for fewer pockets and Velcro fastenings instead.
Let’s get organised
Start with an empty school bag.
Ask your child to sort out their school things into clear categories. For example, school supplies such as pens, pencils, notebook, communication book in one pile. Items that go back and forth to school like lunch boxes, water bottles and PE kit in another pile.
Assign each item to a compartment or pocket. A big compartment can be for books and their lunch box. A smaller pocket for writing equipment.
A school-home folder is ideal for any loose papers, letters, or permission sheets that need to go back to school.
Make a map
Once everything has its place, help your child draw a picture of their school bag and label what goes where. This school bag ‘map’ will help remind them where things go when they are packing up for the
Encourage your child to practice emptying their bag and putting everything back in the right place.
Keep a copy of the map in the front pocket of their school bag plus a copy at home.
Pack all the right kit
Use a simple checklist attached to their school bag listing all the things they need to remember to take to school for each day of the week. The checklist should be sturdy and easily seen. Using different coloured lists makes it easy to identify the right list for each day.
Picture cues work well for younger children or non-readers as well as older children and those with additional needs such as dyslexia, dyspraxia, autism, or ADHD.
Getting into the habit of packing the night before is a great way to avoid the last-minute panic searching for homework or PE kit in the morning when you really should be leaving the house!
Bear in mind that children may need lots of practice before they can organise and pack their school bag independently.
Give lots of opportunities to practice these techniques and make forgotten school items a thing of the past.
‘While we try to teach our children all about life, our children teach us what life is all about‘ ~ Angela Schwindt
My son, Tom, the inspiration for TomTag visual supports, turned 21 years recently. It seems like only yesterday that he was a new born baby snuggled in my arms. Like any new mum it felt like the beginning of new things. A rainbow of hopes, dreams and possibilities spreading out before us.
Autism cast a shadow on that rainbow.
But the rainbow was always there. It just needed to be looked at from a new perspective. With the understanding that hopes, dreams and possibilities mean different things to different people.
Over the last 21 years Tom has taught me so much. Not just about lorries, swiss trains and football 😉 But, about the important qualities in life – patience, resilience, humility and determination. That each of us has a right to be here, to be heard and to live life to its fullest potential.
To celebrate Tom turning 21, I’m sharing 21 lessons I’ve learnt from living with autism. I know what a rollercoaster it can be parenting an autistic child so I hope our experiences bring some positivity and hope to those of you who may be going through similar experiences. Please know that however hard it is now, with time, things do change, the shadows lift and the rainbow reveals itself🌈
Lesson 1: Let Go Of Expectations
As a new mum, ‘What to Expect the First Year ‘ by Heidi Murkoff was my bible for the first 12 months of Tom’s life.
Like every new mum, every month I proudly ticked off Tom’s achievements– sitting, crawling, first solid food. Then I almost burst with pride. Aged 10 months, he pulled himself up on the sofa and walked across the room!
But when I took him to the playground, I noticed that Tom ignored the other children. He wasn’t interested in playing on the slides and swings. Instead, he spent his ‘playtime’ picking up handfuls of the gravel and watching it fall between his fingers.
I was a bit confused by Tom’s reaction and obsession with the gravel. I felt sad for him that he was missing out. Over time I found the joy at seeing him engrossed in HIS form of play. It was an early lesson in letting go of MY expectations. Now I understand that playtime was always going to be a sensory experience for Tom. He always wanted to touch things and liked to know how things tasted or smelt. Even railings, but that’s another story!
I didn’t know it then but letting go of expectations was to become my mantra.
Lesson 2: Live In The Moment
From an early age Tom was fascinated with water. As a toddler he loved to pour water into and out of small cups or jugs for hours on end.
The joy of watching him completely absorbed in his water play, his curiosity for the waters feel, look and movement taught me to live in the moment.
I realise now it was a sensory need for him. The visual stimulation from the patterns made when the water dripped and poured into various containers made him feel happy and calm.
Lesson 3: The World Is Loud And Bright
When Tom was a toddler, I often thought he had superhuman powers of hearing and seeing. He could hear a dog bark from miles away, get agitated during loud conversations and react immediately to bright lights.
Yet…he didn’t seem to hear me calling his name. These powers, far from helping him, seemed to cause him acute distress. He covered his ears and eyes with his hands, hid under tables and tried to run away. Anything to get from the noise and brightness. If he couldn’t get away, he would have a meltdown.
I was confused and worried by his reactions. I instinctively knew what would help him. He needed his favourite Tellytubby, a cuddle and a quiet place to make him feel safe.
Since having Tom I’ve realised how loud, bright and intense the world can be. I know now that he sees, feels and hears things that I’d never paid much attention to much more intensely. This sensory overload was the reason for his meltdowns. Heck, maybe that’s why he walked at such an early age …so he could escape!
I’m now more aware of the sights and sounds around us. I’ve even noticed that the intensity of fluorescent lights in offices and shops often affects me . During these moments of sensory overload I need to find a quiet place and take time to collect myself.
Lesson 4: Silence Can Speak Volumes
When I came home from hospital after giving birth to Toms sister I expected a grand home coming. I was looking forward to an excited toddler giggling and rushing towards me arms outstretched, impatient for a cuddle.
Instead I was greeted with a silent hug . A seemingly underwhelming welcome. I knew, however, from the way Tom hugged me, so tightly. The way he looked at me that he had missed me, that he loved me.
This was the start of my understanding that we didn’t need words to communicate. It was a good thing as he didn’t start to talk until he was nearly 5.
We’ve had a humongous amount of hugs since then!
Lesson 5: Never Take A Milestone For Granted
Tom was nonverbal until almost 5 years old.
When I was told by doctors that it was highly likely Tom may never speak. I was devastated. I could feel his frustration at not being able to tell us what he wanted. We had to find some way he could communicate with us.
Tom used to take me by the arm and pull me towards what ever he wanted. For example, the fridge if he wanted a drink or the front door if he wanted to go outside. We had to find a better way.
We started using objects and picture cards. These gave him a way of showing us what he needed or wanted. He’d give me the drink card if he wanted a drink or show me the coat card if he wanted to go outside. Guess which card was always top of the pile!? The biscuit card!
It’s not the milestone we were expecting but we didn’t take his progress for granted.
Lesson 6: Celebrate Every Unique Moment
The arrival of Tom’s sister Hannah marked the start of Tom’s shut down period.
Most of us sadly, are all too familiar with a lockdown but Tom was ahead of the curve! Back in 2002, he went into his own self-imposed lockdown. Showing zero curiosity about his new baby sister, Hannah, other children, or visitors. He screamed when she cried. There was only one thing he wanted to do all day, every day. Lie on the floor and move a piece of a toy wooden train track up and down in front of his face.
It was heart-breaking to watch. I felt intensely sad. Tom was missing out on all the fun toddler things I had planned to do with him. I was also fearful. Worried that Tom would forever resent his little sister.
One afternoon, without warning, Tom abandoned his beloved train track (seen in the photo at the edge of the rug). He spontaneously started to play with Hannah. Tears of joy streamed down my face. I knew that this was a unique moment to be celebrated.
From this small precious moment, the most incredible bond between the two of them has grown and developed over the years.
Lesson 7: Life Goes On
Receiving Tom’s diagnosis of autism just before he turned 4 came as a mixture of relief and sadness.
Relief as for almost 2 years I’d had a nagging feeling that something wasn’t quite right. Tom’s lack of speech, repetitive play and extreme reactions to any changes in his routine now made sense . However, I felt an equal measure of sadness. The future I imagined had been taken away. I felt isolated, overwhelmed, and missed having my family and friends on the doorstep.
But life goes on. I quickly became the CEO of Tom, Plc!
Soon after the diagnosis, we were offered a place on a home-based therapy programme – 40 hours a week of applied behavioural analysis therapy (ABA). A 2-year programme (the first of its kind in Switzerland) which took over my life. My weeks became a flurry of appointments, assessments, and the day-to-day management of the therapy sessions. Not to mention all the resources, the hundreds of picture cards I made to support the programme.
I hit the ground running! Working as a therapist on the ABA team gave me a sense of purpose. It also allowed me to adapt Tom’s programme so it reflected the things that mattered to him. More TBA than ABA!
Lesson 8: The Power Of A Hug
Three months into Tom’s ABA programme we flew to the UK to attend my mums 60th birthday party. A gathering of over 70 family and friends in a local pub.
It would have been easy to opt out of going. My mum knew how challenging it was for Tom to be out of routine. She would have understood if we had chosen to stay at home. But seeing family was important . My mum had survived breast cancer, so I really wanted to mark this landmark birthday with her.
The journey didn’t worry me as much as the party. We had made frequent visits to the UK since Tom was a baby. We often joked he had been on a plane more times than a train or bus. My travelling preparation was therefore honed to a tee particularly my ‘survival bag’. A handy assortment of books, toys and treats which went on all our travels. It could be deployed to help distract and calm Tom in situations he found stressful or overwhelming.
But, it was often a simple hug, which had the real power to calm, reassure and comfort him.
Lesson 9: The Importance of Perseverance
Tom made huge progress on his ABA programme. He started to speak and repeat phrases.
We were so excited to hear his voice. When he randomly said ‘Nanny’s greenhouse’ we flew back to the UK as soon as we could. Delighted that he could see Nanny and her greenhouse!
I’d have to wait a bit longer to hear him say ‘I love you mummy’. Tom had significant speech and language difficulties. He was unable to express his ideas and thoughts in complete sentences and had trouble pronouncing certain sounds. I admit I found the way he said ‘wamp’ for lamp charming. However, other people found it difficult to understand him.
He started regular speech and language therapy which included work on his ‘l’ sounds both in the therapy session and lots of practice at home.
With hard work and perseverance, he finally mastered that tricky ‘l’ sound.
Lesson 10: The World Is a Beautiful Place
Tom loves patterns. He is fascinated by lines, shapes and colours 〰🔴🔻🌈
When he was younger, he would often stop and stare at the shadows cast by railings. Fascinated by the shapes made by the lines. He’d be mesmerised looking at a crack in the pavement. Captivated by the glow of the setting sun and transfixed by a falling leaf, as shown in this photograph.
Tom taught me to take notice of all the little things that make our world so beautiful 🌍
Lesson 11: The Power of Sharing
Like every mum dropping their child off for their first day of school, I felt the usual mix of emotions . Proud yet worried about how Tom would settle in. Twelve months earlier it seemed inconceivable that we would find anywhere suitable for Tom. It had been quite a journey to get him to this point. Leaving him in the classroom was so emotional and overwhelming. I had to dash to the car for a cry.
I knew that it would not be possible for Tom to attend school fulltime. His communication difficulties, limited attention span and sensory issues. made full time attendance too challenging. I didn’t want to set him up for failure. For him to feel defeated by education at the very offset.
I wanted Tom to have the opportunity to learn alongside his peers. To have the shared cultural experience of education. I wanted a flexible option – sharing his education between home and school.
We discounted local primary and special schools because they were German speaking. Tom was just learning to communicate in English, so this was a no-no. The international school was our only option. Would they be prepared to share Tom’s education and allow him to have a mix of school and home-based learning?
We were lucky. They did.
Aged 4, and a year older than his peers, Tom started at the Zurich International Preschool for 2 morning per week with an assistant. His ‘at home’ time was spent following his ABA program and with me. It gave him time to sort out some of things he found confusing at school and space to recharge.
This collage of pictures taken during Tom’s Preschool year shows just how happy he was at school. Tom was able to enjoy a shared education for the next six years . We are forever grateful to the staff at ZIS for their patience, respect and commitment to Tom’s flexi-schooling.
Lesson 12: Making Sense of Senses
En route to Cornwall for a summer holiday, Tom broke his arm. He fell off a climbing frame at a service station.
We didn’t realise he’d broken his arm – he didn’t scream, shout or make any fuss. He simply picked himself up and headed back to the car. It was only when we were back on the road that I noticed him clutching his elbow. His face drawn, ashen and etched with pain. We veered of the motorway to find the nearest A& E. This photograph was taken as we waited to be seen at the hospital.
The X-rays showed that it was nasty break. I felt terrible. He must have been in the most horrendous pain and we had been unaware of his suffering.
It was just so confusing. Haircuts, having his toenails cut, washing his face caused him to scream to high heavens. Breaking his arm – not even a whimper.
We already knew that Tom had difficulties with his language and communication. This this couldn’t explain the lack of any emotion to his injury. Even without words, tears would have at least alerted us to his pain. I realised then that there must be major issues with how he was interpreting sensory information. This was having an impact on how he was behaving and responding. It just seemed so unfair for one little boy to have to deal with yet another set of difficulties. I felt defeated…
It was time for an occupational therapist to join team Tom!
Amongst other sensory issues, OT assessments showed that Tom was both overly and under sensitive to touch. His behaviour and certain reactions started to make sense.Tom had always disliked messy play but would be unaware of his hands and face being dirty. He loved being hugged by me but would recoil in horror if anyone else tried to touch him. He touched and mouthed objects but was fussy with his food and avoided certain textures.
So, aged 5, Tom started weekly sessions of OT at school and a programme of activities and exercises at home. With patience, commitment, and hard work, Tom has steadily improved his ability to interpret sensory information from his body and the environment. Haircuts and nail cutting are no longer an issue though he still has a relatively high pain threshold and tolerance for being cold.
This experience with Tom also taught me the importance of providing a nonverbal way to communicate aches, pain (including broken limbs!) and sensory overload to others in a simple and effective way. That’s why we’re proud to include a ‘I can do it manage me feelings ‘ kit in the TomTag range.
Lesson 13: Less Is More
As part of his occupational therapy programme Tom had a series of daily activities to practice at home. There were movement exercises to encourage the right and left side of his brain to talk better to each other. This interhemispheric integration would improve how he could react to his surroundings. There were also lots of fine motor activities. Tasks to help improve the small muscles in his hands and wrists to help him with skills like, grasping, dressing ( zips & shoelaces) writing and drawing.
I was willing to work and put in the time with Tom but sometimes he wasn’t interested in the activities. On days like these it was easy to feel disheartened and resentful.
Short of bribing him with his favourite biscuits (!) I learnt that the secret to getting him to do his OT exercises regularly was to do a little often. It also helped to spread them out during the day and turn them into a game. It was also important not to take things personally. If Tom was stressed or agitated during the activities then we would leave it and start again the next day.
Lesson 14: Joyful Collaboration
Tom’s ABA programme was a success. Now he could communicate what he wanted, concentrate much better and was behaving appropriately at school. But life isn’t just about getting your needs met and fitting in. It’s about connection and friendship. The joyful experience of sharing our ideas and feelings with another person.
How could we help Tom develop meaningful conversation, cooperation, flexible thinking and empathy. All the skills he needed to make and keep a friend?
I discovered Relationship Development Intervention (RDI) by chance in a magazine article. This programme based on Developmental Psychology was the perfect fit. It’s guiding principle is Joyful Collaboration. The idea that joy comes not from a toy or game but from sharing an experience.
Tom moved from ABA onto RDI at the same time as receiving OT and SLT (got to love an acronym or two!). It was a full-time job coordinating all these programmes and collaborating (joyfully!) with various professionals.
For RDI, we practised different activities at home working on joint attention, collaboration, teamwork, and communication.
In this short video clip, Tom (aged 8) and I are sharing the job of watering flowers. We take turns with the watering can with the aim of helping Tom practise being a ‘team member’. Although he was reluctant to water the flowers, he accepted my instructions . I loved how the ‘job’ developed into a fun chasing game. A true Joyful Collaboration!
Lesson 15: Planning Is Key
When Tom was 10 years old, we relocated back to the UK from Switzerland.
For any family moving home can be stressful, moving to a new country -double the stress! I was worried about how Tom would manage this major change in his life.
It was potentially a huge challenge for him. He craved familiarity, had built up excellent relationships with his various therapists and was thriving under his bespoke educational arrangement. How would he cope with a new home, attending school for a full day, wearing a school uniform for the first time?
The relocation went relatively smoothly because we planned and prepared for it. Creating a picture book of the new house and school was a great help .We focused on the positive aspects of the move such as being able to see more of his grandparents and cousins . We encouraged him to share any worries he had about the move. He worked on a story about his mixed feelings about leaving Switzerland with an amazing counsellor at the international school.
He settled in remarkably well at the local mainstream village primary school. There was some regression in his language and behaviour. But, with the support of a sensitive and dedicated teacher and assistant Tom soon found his feet and voice.
I quickly formed a new Team Tom with a new speech and language therapist and occupational therapist.
Planning was therefore the key to making the relocation a success.
Lesson 16: The Importance of Special Interests
It was one of my biggest worries when we relocated back to the UK from Switzerland. How would Tom manage without his special interest. -Swiss transport. He loved swiss trains . His favourite part of any journey was spotting lorries from the Swiss firm Galliker.
Fortunately, I had a secret weapon. Eddie Stobart – the iconic green delivery lorries that criss- cross the UK 24 hours a day.
I cunningly introduced Tom to Eddies and signed us up to the Eddie Stobart Spotters Club. We live near to the M62 – prime Eddie Stobart spotting territory! We could go out to eat as a local pub overlooked the motorway. The staff got to know us . They always gave us a window seat where Tom would quietly sit, happily keeping a tally of all the lorries he spotted on the nearby motorway (using his Eddie Stobart writing pad and pencil!)
Eddie Stobart lorries were a source of comfort and enjoyment for Tom. For us, they became a source of inspiration. Birthday cakes, biscuits, and presents also assumed Eddie status.
More importantly, Eddie Stobart became a means of encouraging him to engage in his learning. Art projects, tricky writing tasks and maths problem could all be given the Eddie treatment! Tom approached any task that had a hint of Eddie, with enthusiasm, happiness and a willingness to learn.
Tom’s love of Eddies lasted 3 years. The most memorable event was a tour of an Eddie Stobart depot and a chance to sit behind the wheel. I don’t know who was more excited – Tom or I!
Lesson 17: Fussy Eating Habits Can Change Over Time
When Tom was younger, he was a picky eater.
I knew that Tom needed a balanced diet – a variety of fresh, healthy food for good health and development. For the first few years, I felt guilty and responsible that he would only eat a limited amount of food.
Tom’s diagnosis of autism and the results of his OT assessment helped me understand his fussy eating habits.
He needed familiarity and routine. Trying new experiences including eating new foods were therefore difficult. It was obvious now why he was preoccupied with certain foods. They provided him with reassuring predictability.
Tom craved soft food like ice cream. He liked the feeling of coldness in his mouth. Bland foods like pasta, bread and chips were his preferred choice. He disliked meat because he found chewing difficult. Though he did make an exception for chicken nuggets! He disliked tomatoes but liked ketchup or tomato sauce because he didn’t like the texture of tomatoes . His favourite meal was pizza but without any topping other than tomato sauce.
Sharing regular meals and snacks and introducing new foods gradually helped Tom get comfortable with new foods. However, the biggest change came when he was 15. He started a Jamie Oliver cooking course at school. By preparing and cooking food with the encouragement from two talented teachers, Tom’s food preferences changed. He was more willing to try different foods.
This Christmas aged 20, Tom enthusiastically dipped carrot sticks and chunks of olive bread into his baked camembert. His food choices have come a long way since this photograph was taken!
Lesson 18: Detective Work
When Tom was younger it was difficult for me to know what his feelings meant. It was also difficult for him to pick up clues about how I was feeling.
Although Tom feels the same thing as everyone else, the nuances can be blurred. His feelings are much more intense and can be harder to distinguish. Feeling sadness could lead to him crying but also to laugh or shout for no good reason. He has difficulty interpreting gestures and expressions – often thinking I’m angry when I’m not!
With his SLT, we created a book of feelings to help Tom understand his own and other people’s feelings. We used this book to teach him the words he needed to express and recognise different feelings.
This work made me look at my own feelings and emotions. I had to understand what feelings mean to me before explaining them to Tom. We were both developing our feelings detective skills!
Helping him to identify the size of his feelings and relate this to his physical reaction was also important. Often, a little feeling could grow into a gigantic feeling. Tom could spend hours, days, even weeks catastrophising. Churning over thoughts and feelings in his mind like a sticky record.
Teaching and modelling simple self-help strategies like self-talk (phrases Tom could say to himself when he was feeling worried) helped. At secondary school he used a sensory levels chart (a visual chart to recognise his sensory stressors) to help him to manage his feelings.
Our experience led to the development of the TomTag Feelings Notebook. A resource for other families to use to support their feelings and emotions detective work.
That’s a thumbs up from Tom!
Lesson 19: Look At Ability Not Disability
Like any parent I was anxious about Tom’s move to secondary school. I had managed to keep him a year behind cohort, so he started at age 12 . However he was both academically and socially behind his peers and it felt like the gap between them was widening. Like a train picking up speed out of the station and you can’t get on it no matter how fast you run.
It was unrealistic to expect any exam success – unless there was an exam in Swiss train timetables and routes! Tom gets anxious even at the mention of the word test. Furthermore, his language difficulties meant that he struggled to understand complex sentences, instructions and specific vocabulary.
Despite the anxieties and challenges he faced, Tom always worked hard and tried his best . He was the only young person at his school to consistently achieve straight A grades for attitude across all subjects. This exemplary attitude to learning was motivated by his need to please his teachers and not disappoint or upset anyone. Though, he did enjoy many of his lessons. I felt so proud when he was regularly awarded prizes for effort at school prize giving.
Tom left school with few formal qualifications, but he left smiling, confident and with the motivation to continue learning. He even enjoyed Prom!
Lesson 20: Say What You Mean
One of the biggest challenges for Tom due to his language difficulties is making sense of what people are saying.
When Tom’s grandad suggesting taking him for a spin in the car Tom looked horrified!
Before I had Tom, I didn’t think about the extent to which we play games and hide behind words. How often we use sayings like ‘Pull your socks up’, ‘we’ve run out of milk ‘,’Get a move on’ . Many of which are confusing for Tom because he takes what is said literally.
When he was younger, I learnt to tell him exactly what I wanted him to do using as fewer words as possible. I helped him to learn how to look out for expressions on faces and realise the importance of how expressions are more important than the words themselves by emphasising my facial expressions and using exaggerated gestures . Some days I felt like a CBeebies presenter in full flow!
Tom can still become confused by words with similar or related meaning. Encouraging him to say when he hasn’t understood something and talking about some of the saying we use regularly and what they actually mean helps. His love of football is helping him experience playful teasing in a light heated way. Some good old footy banter with people he trusts. Thankfully his team are doing well so he can banter from a position of strength!
Lesson 21: It takes a village.
After 21 years living with autism, I have learnt that it really does take a village to raise a child.
My village is larger than most. My family, friends, the dedicated therapists, teachers, teaching assistants and personal trainer we’ve been privileged to work with over the years . Plus, the many people we’ve met who have shown us the character of their humanity. The hairdressers, barbers, dentists, shops assistants, waiters who when faced with difference have responded with patience, empathy and decency.
Every victory we experience with Tom whether it’s trying a new food, meeting new people or dealing with a change of plan belongs to us all.
Tom has taught me that it’s okay to ask for help. He’s taught me that just like any other child he needed me and our village to believe in him. His potential to learn, grow and thrive alongside his peers and community.
Thank you, Tom, for these lessons in what really matters. I know you will continue to face the next 21 years with courage, determination and the enduring support of your village.
I’d love to know in the comments below what lessons you have learnt from your children.
It has prompted me to reflect on the occupational therapy (OT) my son, Tom has received over the years. Gulp… it’s also focused my mind on the amount of money I’ve spent on buying OT resources!
The main emphasis for Tom has been Sensory Integration Therapy to help him cope with his sensory difficulties. A personalised programme of activities focusing on developing his gross and fine motor skills and his sensory perception (i.e. touch, body awareness, balance, auditory & visual skills) has been game changing.
Naturally some activities and resources have proved more successful than others so I thought it would be helpful to select our TOP 10 to share with you.
1. HUG & TUG
Tom followed a series of activities from The Handle Institute . Hug and Tug was one of his favorites and an exercise he still uses today.
This simple exercise can calm anxiety, increase concentration and help develop fine motor skills. Just needs two hands and can be done at any time!
Rest your arms on a supportive surface or place them lightly against your lower ribcage. Interlock your index fingers.
Squeeze and pull with your interlocked index fingers – one relaxes as the other pulls, then the other relaxes and the other finger pulls. Both of your arms remain relaxed – only the fingers are moving.
Repeat the back and forth pull-release three or four times as the index fingers stay hooked together.
Unhook your index fingers and interlock your middle fingers , and repeat.
Continue with all fingers and then, finally, hug and tug your thumbs
2. SCOOTER BOARD
At his last school Tom cut quite a dash scooting along the corridor propelled by his arms! Great for building up shoulder stability and core strength.
Make a set of cards showing different animal walks then take it in turns to choose a card and complete the exercise shown on it. Try dog walks, bunny hops, kangaroo jumps, crab walks – whatever takes your fancy. Great for building upper body strength and a sense of humour!
This is a good activity to do with siblings and as a rainy day or birthday party game.
Stuck for ideas? Pop over to the blog Pinning With Purpose for some good tips on how to make your own animal exercise cards.
Fledglings have are some lovely reasonably-priced Rainbow Putty which comes in a variety of different colours and is colour-coded to indicate the level of resistance.
7. HIDDEN TREASURE
Fill a tub with rice or another pulse and hide small objects such as toy cars, figurines or sweets. Great to develop fine motor skills and another fun party game.
Swinging is good for vestibular movement. My son particularly liked this cuddle swing.
They can be expensive to buy so here’s some tips on how to make your own cuddle swing and there’s even some ideas for versions that don’t need attaching to the ceiling.
9. CRAFT ACTIVITY
There are plenty of options here – we chose to make our own domino game using card, craft foam, marker pens and stickers.
There were lots of opportunities to practice fine motor skills with all that cutting, sticking and drawing and we all enjoyed playing the finished result.
10. CHEWY TUBE
Our bright red T-shaped Chewy Tube saved many a shirt cuff and tie being shredded! Very resilient and helps develop chewing skills as well as reducing anxiety. Sensory Direct and Chewigem both have a good range of oral motor aids to choose from.
Click here to find out more about what occupational therapists do and how occupational therapy can help .
My autistic son Tom (the inspiration for TomTag visual schedules) struggles with changes to his routines. His autism means that he perceives the world differently to other people. For him, the world can often seem a strange, unpredictable, and confusing place. It is understandable why he craves the stability and predictability of repetitive routines and activities, and the comfort of familiar food. However, as a wise man once said, the only constant in life is change. Learning how to be flexible and less rigid about routines is a crucial life skill. It is one that Tom has developed over the years, with the help of visual supports.
Visual schedules are a great tool for teaching flexibility around changes to routines. This may seem surprising – surely a schedule means sticking to a repetitive routine? However, it’s not the visual schedule that makes changes to a routine difficult but the way it is used.
In this blog, I’d like to share with you an approach you can use with TomTag visual schedules to help your child be less rigid and more tolerant of changes to their routines.
Use a schedule
Make sure that your child understands how their schedule works and uses it regularly. If your child doesn’t understand their schedule or use it regularly then it is unrealistic to expect them to deal with changes to it.
A TomTag I am flexible tag is a great way to introduce your child to changes to routines when used alongside their normal routine tag. Using the format ‘instead of‘ … ‘I am flexible’… is a simple visual way to familarise your child with a proposed change in their routine.
Words can have a powerful effect. I am flexible is a positive affirmation that will give your child a sense of achievement and boost their self esteem.
Start with positive changes
Start with something positive, for example, a change to a preferred activity or food choice.
In the examples shown- sand play instead of inside play, fish fingers instead of pizza (go with the preferred activities/ food choices for your child!)
Start with a change that is not upsetting. This also reinforces the idea that a change does not always have to be negative.
Giving initial warnings
Although the aim is to get to a stage when you don’t have to give warnings about changes – life is unpredictable after all – you shouldn’t expect your child to immediately accept changes without doing the necessary groundwork.
Like all new skills, the best way to learn is to break the skill down into small sequential steps.
Refer to their morning schedule tag and show them the proposed change. In this example, if their morning routine shows inside play then show them the I am flexible tag with the new play activity at the earliest opportunity e.g. before breakfast.
Ask them to change the activity on their schedule to the new activity themselves. Our symbol packs include 2 copies of every symbol so you don’t have to worry about running out of symbols. Their morning schedule tag now shows the new activity.
Keep the I am flexible tag handy. Depending on your child’s level of understanding, a short verbal explanation of why the change has taken place would also be helpful.
Give another warning just before the changed activity happens. Show your child the I am flexible tag to reinforce your verbal warning. This will help them remember the change and prepare for it.
Praise and encouragement
Praise your child specifically for handling the change well using supportive positive statements like, “I like how well you managed it when we changed the schedules” or “Change can be hard, but you are doing a great job!”
Saying “You are so brave handling that change in the schedule without getting upset!” is particularly useful if your child is very anxious about change.
Try not to say “See it wasn’t so bad was it!” as this could belittle your child’s genuine feelings of anxiety about changes and make them feel anxious about having these feelings.
Fade the warnings
Once your child can manage changes to their routines with warnings, start moving the warnings nearer to the time when the actual change is going to happen.
So in the example tags I have used above, you could move the warning about the change of play activity to later in the morning.
Make sure that your child’s schedule is always accurate.
Being prepared makes changes to routines so much easier to manage. It also keeps the schedule consistent so your child knows they can rely on it.
I hope you find this approach useful in helping your child learn to accept and manage changes to their routine.
Want to make your own schedules, routines and I am flexible tags like the ones shown in the examples here or need more advice before getting started on introducing routines or changes to routines? Take a look at the resources below or get in touch with Clare via our contact page.
Set your child up well for later life by by helping them learn a life skill such as household chores when they’re young (and eager!).
Children learn how to look after themselves and their home and become familiar with concepts such as teamwork and the discipline of routine. Household chores can also be a way to improve self-worth and encourage independence for the future.
We all like the feeling that we can help! Make use of the increased shared time we are having together at the moment and give your child a sense of pride and accomplishment at being able to contribute and enjoy some time with you.
TomTag is an ideal tool for teaching a life skill such as household chores. Here’s some ideas from our Help at Home kit of how you might use it :-
Use a set of tags to give step-by-step instructions for cleaning different rooms in the house.
Label a tag with the name of each child and list the chores they need to complete that day/week.
List the jobs you want completing on separate tags. Let each child pick a tag out of a hat to find out what their task is.
Start them young
Building good habits from an early age always makes things easier in the long run. Children as young as 2 years old can pick up their own toys, put dirty clothes in a washing basket and wield a duster.
Make it fun
Turning tasks into a game always makes things more fun. Turn the radio up and dance while hoovering, shout out colour names when sorting laundry or let kids compete to be the first to tidy their room (to your standard!).
The right chores
This will naturally depend on your child’s age and developmental level. You’ll find plenty of guides online but you’re the best judge of what your child’s ready for. Watering plants is always a favourite in our house. Who doesn’t like pouring water! Build up gradually to the more difficult tasks so they don’t get frustrated if they can’t complete the task independently. Our Pinterest Household Chores board has lots of ideas for age-appropriate chores.
A family affair
Set a good example by making sure that everyone helps out – in an age-appropriate way. If you child is old enough, involve them in a family discussion to decide who should do what around the house. Offer options so that children can choose the jobs they prefer. If no-one wants to do a particular task (such as cleaning the toilet!), use a rota system so that everyone takes a turn.
Praise and encouragement
Don’t expect perfection, especially at first or if they are very young. Praise those things they did well and they’ll feel proud of what they got right and motivated to do the job again next time. Tell them how much it helped you and they’ll feel they are making an important contribution to the family.
This will depend on your own family values and views but if you want to add an extra incentive, chores can be linked to giving pocket money or earning other treats. Use a blank sticker to add a £ button to each chore checklist, like this one for helping out at mealtimes and doing the dishes.