An Occupational Therapist’s Guide to Potty Training

(This is part one of a two-part blog series)

Is it time to change the way we potty train?

Potty training is one of the first and important steps towards building independence. As a social and developmental milestone, it is quite unique as it relies upon a parent or carer to both instigate the training process and provide ongoing support. Yet for children with a physical or Neuro-disability, the approach is often haphazard.  Why is this so?

Potty training has evolved, devolved and evolved again countless times over the years, and across the world. In many cultures, training begins as early as one year old, however, in the Western world the age has more than nearly doubled in the last 60 years from 18 months to three years old.  Modern lifestyles, the shift in social expectations, changes in work-life balance as well as the introduction of disposable nappies have all influenced this remarkable rise. 

While delaying potty training for typically developing children may cause little harm, the impact of delaying or completely overlooking training for children with disabilities, can lead to serious problems such as constipation, urinary tract infections and urge incontinence. Constipation alone is estimated to affect 1 in 3 children and often requires acute medical attention in children with disabilities; never mind the often-neglected impact on mental health, family participation and quality of life.

Training the bladder and bowel is important for both physical and physiological development. In simplistic terms, the muscles surrounding these organs operate much like any other muscle in our body. If the muscle is unused, it becomes weak and functions poorly. By training and strengthening the muscle, the function improves.

So, why is it so often overlooked and what influences whether, and indeed when, a child with a disability is potty trained? Is it their mobility, their communication, their learning ability, or even the age that their siblings or peers were trained?

The reality is a mix of these factors. Ironically (and I can vouch for my own professional experience here), while there is a wide range of resources to support toileting, such as advice on diet, equipment and undressing/dressing, there is very little specific guidance on potty training and often no single healthcare profession takes the lead in providing support.

Why is this? Well, this is largely down to potty training being perceived as a parental responsibility. Recent research challenges this thinking as it reveals that not only is potty training a complex neurological process, but that a team-based approach greatly aids success.  Much potty-training advice leads you to believe that there is a ‘lightbulb’ moment when everything seems to fall into place. Yet this is not the case.  It takes millions and millions of neural pathways linking up and working together before this happens. Evidence supports the understanding that several core regions of the brain, relating to the sensory interpretation, muscle control, social awareness and understanding, are responsible for continence.

For children with a physical or neuro-disability it is likely that at least one of these regions will be impaired. However, this should not necessarily limit the child’s potential to toilet train as we can maximise the child’s neuroplasticity (the brain’s ability to reorganise and form new synaptic connections) to develop potty-training skills.  Over the past 2 years, I have had the good fortune to support families in applying principles of neuroplasticity to potty train their children. It has been rewarding to see how by understanding the child’s impairment and applying new strategies, success is achievable with a positive and transformative change in the life of the child and their family.  

In part 2 (coming soon) I will explore how applying neuroplasticity to potty training is the key to success.

James Gilmour, Occupational Therapist


Fowler, C.J. and Griffiths, D.J. 2010. A decade of functional brain imaging applied to bladder control Neurology and Urodynamics, 29, pp. 49-55.

Fowler, C.J. and Griffiths, D.J. 2010. A decade of functional brain imaging applied to bladder control Neurology and Urodynamics, 29, pp. 49-55.

Franco, I. 2011. The central nervous system and its role in bowel and bladder control. Current Urology Reports, 12, pp. 153-157.

Malykhina, A.P. 2017. How the brain controls urination. eLIFE Sciences, DOI:

Millard, E., Benore, E. and Mosher, K. 2013. A Multidisciplinary Functional Toileting Pathway for Children with Cerebral Palsy: Preliminary Analysis. Clinical Practice in Pediatric Psychology, 1(1), pp. 81-88.

I Am

I am a nurse.

My shift never ends as I sit bedside, wheelchair side, and every side in between. I give medication and comfort, I feed and I clean.

I listen to your fears and distract your worried mind, pausing every now and then to wipe away the tears.

I am a therapist.

I sit through all the sessions and learn all the tricks and ways, taking home what I’ve learned to lace into our days.

Physical and speech, occupational and vision, feeding, behavior, and play…. hand in hand, we do it all each and every day.

I am a secretary.

The phone calls are endless and the paperwork nags and pulls. The calendar is always bursting and my voicemail’s almost full.

My email won’t stop dinging with messages galore and those who wreck my organization get booted out the door.

I am an advocate.

Wherever we go, the educating never ends. I call attention to what people say and the message that it sends.

I do my best to spread the word—to model better ways in love. For some people don’t yet how to place others above.

I ask doctors and professionals to see you for who you are.

I push society away from comfort and toward inclusion reaching far.

I am an athlete.

I lift and hoist you day in and out. Into the bathtub, out of the chair, into the van, and all about.

It is my joy to hold you near as I help your body function, my dear.

Caring for you keeps me feeling strong and reminds me that I am right where I belong.

I am a teacher.

I teach you academics, life skills and more. You take what I teach you and with it, you soar.

Although I am a teacher, the truth is, you are too. You teach me so much more than I ever could teach you.

I am a cab driver.

From doctors to therapy to hospitals and back, our life is often lived on a very fast track.

I load up the van, all your equipment and you, and together we embark on journeys driven by love so true.

I am a maid cleaning up the mess that never ends. I am a playmate, building, laughing, and loving shenanigans.

I am a researcher searching for the answer to your every need. I am a visionary committed to seeing all you were meant to be.

I am a comforter holding you through life’s greatest, deepest pain. I am a giver but what I give cannot compare to what I gain.

I am all these things and so much more woven all together.

I am proud to be a special needs mother.

All in A Year

In one year so much has changed. This time last year, Rory and Alfie were both still babies; still cuddly and chubby with fat rolls to die for.

Now, they are little boys; boisterous, mischievous and always looking for an adventure.

But it is not only Rory and Alfie who have changed, our entire family has changed!

I completed my degree and started my training contract to be a solicitor, Zak and I became engaged and we started the search for our forever home.

Though we haven’t found it yet, it is an exciting journey to be on.

What is more exciting is watching our boys grow up.

Whilst watching Rory develop and grow, we never thought we’d see Alfie progress much further.

From his diagnosis, all of the experts were nothing but negative. All they could say is what Alfie will never do.

Yet one year on and he has defied their expectations already, he is becoming stronger physically and mentally.

He is learning to crawl and can walk with the help of his walking frame, his cheeky and sassy nature shines through more and more each day.

He is testing boundaries, the same as any other two-year-old and learning about his likes and dislikes.

In January 2018, Alfie got his cochlear implants and over the past 6-months, his use of them and understanding of language has developed massively.

He turns to the sounds he enjoys, is startled by the sounds he doesn’t expect and has even started to ignore people when he cannot be bothered to listen.

For parents of hearing children, your child ignoring you and rolling your eyes when they are bored of listening to you is normal, sometimes even expected.

It is a part of development and growing up. But for parents of a child with hearing loss, it is exciting and amazing when you realise your child is choosing to ignore you.

For many, this will make no sense- why would someone enjoy being ignored, especially by their child?

But with cochlear implants, sounds are not distinguished, it is not possible to focus on one sound as all sounds are picked up, whether Alfie wants to hear them or not.

So, for Alfie to hear us and choose not to respond is amazing. Sometimes you see him smile and look away, taking delight in being able to choose not to respond.

And for Alfie that is incredible.

To be able to choose what he wants to do and doesn’t want to do, what he likes, and dislikes was something that was always uncertain for Alfie.

Due to the nature of his disability, it wasn’t known if he would be mentally and intellectually able to make choices because we didn’t know if his cerebral palsy would affect that part of his brain.

So, to see him make conscious decisions and understand what is going on around him bring us indescribable joy and happiness.

He truly is unstoppable, and we will always be there to support him and Rory in everything they want to do.

His diagnosis does not and will not define him

Accessible Shopping Survey – The Results

In a recent survey we asked our online community to share some of their thoughts and experiences when shopping with their child.

The results are in and we plan to use the findings to support the GoTo Shop campaign and show retailers how they can make their stores more accessible to special needs families.

So, what did we learn?

Our survey was undertaken by parents of children aged from 13 months to 25 years with a variety of conditions such as Cerebral Palsy, Down’s syndrome, Autism and Metabolic Disorders.

86% of participant’s children were wheelchair users.

We asked parents what their preferred method of food shopping was; only 7% chose online while the rest preferred to physically go to the store or a combination of both.

However, 66% then went on to say that they have, at one point, felt forced to shop online due to accessibility issues at their local supermarket.

This highlights the need for retailers to be more inclusive because, although parents want to shop in their stores, they feel that it is not always an option.

The majority of those asked said they choose to take their child shopping with them but 85% find supermarket shopping to be a challenge.

We asked parents to expand on exactly why this is the case and found that the majority of participants found supermarket shopping to be a challenge because of issues surrounding inaccessible shopping carts.

In fact, 63% described a problem with pushing a cart and wheelchair simultaneously or that there was no suitable cart available to them.

“We need 2 people if we want to shop with our son, one to push the cart and one to push the wheelchair. Otherwise, I can only grab a few things”

A further 6% stated they needed to arrange childcare in order to carry out their supermarket shopping.

“I cannot take my son shopping so I have to fit it in around school hours”

When asked what additional features parents would like to see in their preferred store, 60% said they need an accessible changing area and 49% an accessible shopping cart.

One of our most overwhelming statistics shows that 91% of parents said they would be willing to travel to an alternative store if they offered a more accessible shopping experience.

This highlights the importance for retailers to be more inclusive or face losing customers.

Similarly, if supermarkets were more accessible, 58% of parents said they would be more likely to spend a longer amount of time instore; a considerable benefit to the retailer.

The survey has given some valuable insights into the issues faced by parents of special needs children and provided findings we can present to retailers in the hope they will strive to provide a more accessible shopping experience to ALL their customers.

It’s clear from the results that one major issue faced by special needs parents is that supermarkets do not offer a shopping cart which is safe and suitable for their child.

This means many are forced to shop online, arrange childcare or a second person, or struggle with a wheelchair alongside a shopping cart.

At Firefly, we want this to be a thing of the past by making sure #EverySupermarket provides at least one GoTo Shop cart.

You can help us to achieve our goal by taking our campaign leaflet and requesting a GoTo Shop at your local supermarket.

For more information on how you can get behind the GoTo Shop campaign, e-mail us at [email protected]

GoTo Shop – Good News!

We at Firefly, along with our amazing community, have been hard at work behind the GoTo Shop Campaign – and we have some fantastic updates we want to share with you.

For anyone not familiar with the GoTo Shop Campaign – let us catch you up!

The Firefly GoTo Shop Cart which has transformed shopping trips for special needs families in over 3,500 UK stores, is now available for distribution in the US, Europe, Australia and Canada.

As you will be well aware, we have a strong community at Firefly and parents are continuously sharing the challenges they face with everyday tasks, like grocery shopping.

The GoTo Shop has been designed to make shopping trips easier for parents and carers of young children with disabilities.

The shopping cart seat includes a secure and adjustable 5-point harness, adjustable head and lateral support, a soft padded seat and an open front for easy transfer.

Parents who have used the cart in the UK have commented on the social benefits of the face-to-face interaction they get with their child – and the smiles on the faces of the kids we get photos of never fail to brighten our day – it makes us realise how badly the GoTo Shop is needed!

Over the past few months we’ve also been working with two leading retailers in the USA and a one in Australia, trying to get the GoTo Shop into their stores. We’ve found that retailers are now asking for social proof.

This is why we need you to keep sharing and tagging your local stores on our Facebook page!

In recent weeks we have had some pretty exciting news for the campaign.

The GoTo Shop has made its way to Greece, France and Germany – which is pretty awesome right?

Not only that but our Firefly Friends in the UK can now request the GoTo Shop in another major retailer.

ALDI are now behind the GoTo Shop Campaign! Just go and ask for one at your local store.

There is still so much potential for this campaign, so we are calling on you our wonderful community to keep up the hard work with your campaigning.

If your local store doesn’t have a GoTo Shop download our leaflet here and bring it to your local store manager. Together we can make a difference!

Want to get involved in the campaign? Head here to find everything you will need.

Let us know your progress – we’re asking for your help, so you can bet we’ll be there to help you with your efforts!

If you require more information, assistance or if you want to let us know your progress feel free to contact Mark at [email protected]

US Accessible Theme Parks

At Firefly, we know how difficult it can be for some Special Needs families to have a care-free family fun day.

Fortunately, across America, some theme parks are adapting to become more inclusive for all families, ensuring every child can have a fun day out, and not be excluded.

Six Flags

Earlier this year Six Flags Great Adventure, in New Jersey, held a, “Sensory-Friendly Autism Day”.

Designated decompression areas included iPads and the lights and music were adjusted to create a friendlier environment.

Resources and presentations were given throughout the day and, in addition, specially-trained staff were on hand.

The event was ticket-only – even season pass holders had to pay in!

But the purpose of the special day was to educate, fund-raise and introduce families to highly-trained special education staff from the Gersh Academy.


Since 2016, Legoland Florida Resort in Winter Haven, FL has been quietly adapting to become more accessible to families of all shapes and sizes.

One such example is the ‘Hero Pass’.

Guests on the spectrum can get a ‘Blue Hero Pass’, at no additional cost, ensuring the child’s entire group can get accelerated access to some of the site’s most popular attractions.

Those with mobility difficulties can also obtain a ‘Hero Pass’ and everyone can access the extremely helpful guide online to inform them of the most suitable rides.

There are also guides to let parents and carers know what to expect, in terms of noise and lighting, for each ride.

The park even has quiet rooms with sensory toys, noise-cancelling headphones and, unsurprisingly, Lego building tables.

All newly-hired staff, or “Model Citizens” as they are called, are trained to be able to effectively interact with guests on the autistic spectrum and their families.

Throughout April (World Autism Month), Legoland even contribute a percentage of ticket sales to Autism Speaks, and light up certain areas of the resort in blue.

Edaville Family Theme Park

An April 2007 study from the National Autistic Society found that children with autism associate with,  “Thomas the Tank Engine”, more than any other children’s character.

The study posited that the reason was the simplistic emotions on the faces of the characters.

In years since it’s been theorised that the crashing and smashing of the trains proves engaging, as well as the appeal of the organisational structure of trains.

No wonder parents of children with autism flock to the Edaville Family Theme Park which includes, “Thomas Land”, as well as, “Dino Land”.

The Park teams up with local non-profits, schools and programs that help kids with autism to educate and encourage inclusivity.

The site also has a huge Autism weekend for families as well as a permanent quiet cart on one of their trains, as well as quiet rooms and areas for kids to, “run their wiggles out”.

Sesame Place

There was huge excitement in the autism community when Julia, the first Sesame Street resident with autism, arrived on the scene.

Perhaps even more exciting for families with children on the autism spectrum was that Sesame Place in Pennsylvania became the first theme park, worldwide, to be designated as a Certified Autism Centre.

Staff receive training in sensory awareness, motor skills, autism overview, program development, social skills, communication, environment, and emotional awareness.

Sesame Place has a Ride Accessibility Program, matching each guest to the requirements of each ride.

This can also include priority boarding and queuing, ‘virtually’, so they can enjoy other activities as they wait.

The park also provides noise-cancelling headphones as well as access to their quiet rooms.

Low sensory areas can be found around the park in addition to low sensory parade viewing areas and special meet and greets with Julia herself!


Dolly Parton has a long history of philanthropy, with her Imagination Library recently donating its 100 millionth book.

Dollywood, proudly claim their Calming Room, to be the first of its kind in the world.

The room, opened in the Pigeon Forge, TN park in 2016, includes weighted blankets, sensory toys used in therapy programs and softly glowing lights.

The website also includes a “walkthrough guide” helping guests to know what will happen on their visit.

Holiday World

Another location with a calming room is Holiday World in Santa Claus, Indiana.

The room includes beanbag and rocking chairs, a tent and adjustable lighting.

The room can be reserved for 30-minute sessions, ensuring families are left to themselves during their scheduled time.

Furthermore, Holiday World also hosts ‘Play Day’, an annual and exclusive occasion that lets children with difficulties, including those who are wheelchair-bound, enjoy the rides.

Proceeds from the event are donated to Easterseals.

Cedar Fair Entertainment Company

Each of the eleven parks owned by the Cedar Fair Entertainment Company include Ride Boarding Passes for those with issues with mobility or are on the Autism spectrum.

These parks include California’s Great America, Carowinds in Charlotte NC, Kings Island, Mason OH and, the original, Cedar Point in Sandusky, OH.

The parks can also arrange for their shows to provide ASL interpretation, if informed a week in advance.

Alternate entrances can also be provided.


Disneyland and Disney World provide a Disability Access Service Card. The DAS card allows those who are unable to queue to receive return times for rides.

Once the guest’s party finish a ride they can obtain another card, similar to how the FastPass service works.

Disney Parks have responded to criticism that abuse of the system was becoming difficult to control and readjusted the system.

Additional resources and information packs can also be provided.

Morgan’s Wonderland

While all the parks mentioned above have made leaps and bounds to become more inclusive, Morgan’s Wonderland is the only theme park specifically designed for children with special needs from the ground up.

In 2005, Gordon Hartman sold his businesses in order for him and his wife, Maggie to focus their time and efforts into The Gordon Hartman Family Foundation.

In 2010 they opened Morgan’s Wonderland, named for their daughter.

It offers free admission to guests with special needs and is entirely wheelchair-accessible.

Even the water park extension, Morgan’s Inspiration Island, offers heated water and waterproof wheelchairs and wristbands.

Next to the park you’ll find The Academy at Morgan’s Wonderland, a school for students with special needs that the Hartmans opened in August 2011 which helps students from 12 to 24 to reach their full individual potential.


*Whilst all parks listed are accessible or autism-friendly, we advise calling beforehand to make sure the park will be able to cater for your family’s individual needs.

Three Books that Helped us Become Better Parents

Too often, as parents we focus too much of making sure our children have all of their needs met and neglect our needs.

All parents of special needs children need to take time for themselves to address their own issues regarding our chidren’s needs.

Believe us, knowing how to deal with your own feelings and emotions goes a long way in helping your child address their own struggles.

Here are three books that helped us be better parents:

 ‘A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs’

by Cindy Dowling

The writings collected here are grouped into chapters reflecting the progressive stages of many parents’ emotional journeys, starting with grief, denial, and anger and moving towards acceptance, empowerment, laughter, and even joy. Each chapter opens with an introduction by Neil Nicoll, a child and family psychologist who specializes in development disorders.

‘Expecting Adam: A Story of Birth, Rebirth, and Everyday Magic’

by Martha Beck

John and Martha were an ambitious American couple. With six Harvard degrees between them, and living in the refined atmosphere of the Harvard campus, the last thing they expected was to become parents to a Down’s Syndrome baby. This is their story.

‘My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities’

edited by Yantra Bertelli and Sarah Talbot

An assortment of authentic, shared experiences from parents at the fringes is a partial antidote to the stories that misrepresent, ridicule and objectify disabled kids and their parents.

Novels Feat. Special Needs Characters

“We are, as a species, addicted to story. Even when the body goes to sleep the mind stays up all night telling itself stories.”

(Jonathan Gottschall, The Storytelling Animal: How Stories Make us Human)

You can’t escape stories, they live everywhere.

We find them in books, TV shows, music, advertisements, jokes, anecdotes, love letters, emails, memories and places we haven’t looked yet.

Each new story, fictional or otherwise, can fill an empty space in our worldview with colour and detail or alter what existed there before.

Stories matter because all of us want to feel understood as individuals and as part of a community.

This certainly applies to the special needs community.

There’s nothing like a good book and a cozy spot at home to unwind during rare moments of downtime.

Have a glance at these three novels featuring special needs characters that we think everyone should read:

1. ‘The Memory Keeper’s Daughter’

by Kim Edward

David’s relationship with his wife, becomes rocky while their son must deal with their uneasy relationship and his own longing to know the sister he lost.

2. ‘Up High in the Trees’

by Kiara Brinkman

This book will make you cry.

Young Sebby Lane tragically loses his pregnant mother when she is hit by a car.
Already emotionally and sensory sensitive,Sebby’s father, Stephen, decides to take Sebby to their summer home, but there Stephen falls deeper into his mourning.

3. ‘Of Mice and Men’

by John Steinbeck

This classic story of two men—Lenny and George—one who has a child-like mentality but brute strength, the other who takes on the role as a father-figure to the other.

Success! Tesco have 1,350 GoTo Shop Trolley’s!

Thanks to our Firefly Community the GoTo Shop campaign is getting bigger and better!

Tesco first trialled the GoTo Shop in July 2015, here we are almost 3 years later and look how far we have come.

There are now 1,350 GoTo Shop trolleys in Tesco stores across the United Kingdom, find all store locations here.

This now takes us to a grand total of 3,500 GoTo Shop trolleys throughout the UK and Ireland – how incredible!

But we aren’t giving up just yet, there’s still lots of campaigning to do – our mission is to see a GoTo Shop trolley in every retail store around the world.

If you want to see a GoTo Shop in your local store, we need you to get involved and let your store know.

You can do this by simply downloading a campaign leaflet and handing it in to your local store manager.

Get involved, get campaigning and together we can make a difference.