4 Steps to Gradual Potty Progress – Raising a Child with Special Needs

Things are not so straightforward when it comes to toilet training a little girl with complex health needs.

I remember first buying her a potty when she had just turned three.

She’d been sitting up unsupported for a good while, shortly after her second birthday.

I was mentally telling myself to get a move on: she was three-years-old, for crying out loud!

My other girls were all well out of nappies at this stage.

Not that I like to compare my children to each other, or especially Brielle to the others, but you just automatically do sometimes.

I do remember the sense of normality I felt when going shopping for a little potty chair.

I was getting her a piece of equipment that didn’t need to be ordered by a therapist or doctor.

Now that is really satisfying as a parent of a child with special needs!

How satisfying it felt to be fulfilling a “normal mommy duty” of getting my daughter toilet-trained!

I picked out an adorable little chair that looked like a mini-toilet, with a little flush handle and toilet-roll holder, complete with lights, songs and sound effects.

I thought she would just love all the special effects given her hearing and vision deficits.

Well, let me tell you that she hated that little potty.

No, she was terrified of it.

Needless to say, the first year of trying to get her potty-savvy didn’t go so well.

She would shake and cry and sometimes vomit when we tried the chair so we didn’t do it very often.

1. I decided not to push it

I decided to wait and follow her lead.

We gave the hardly-used potty to a friend.

A year down the road, she takes an interest in a potty chair lid in Granny & Granda’s bathroom.

How fun it is to pull it off!

It is from the stool-type potty that her older sister once used, now residing at her grandparent’s house.

I talked to her about the potty and with time, she started experimenting and sitting on the padded rim.

2. No pressure

A few months later, I moved the potty chair to our bathroom and left it accessible to her, beside the toilet, so whenever she wanted to explore or have a go, it was there.

I could hear the clang of the lid being flung on the tiled floor!

3. Despite her limited mobility and cerebral palsy, she is so eager to help dress and undress herself

So we made the transition from nappies to pull-up pants, so she can help pull those up too.

She loves finding the places to put her legs in the pants!

4. I’ve met with a continence nurse specialist twice now

I am getting some good advice and support there.

Brielle still has mixed success on the potty.

Communication is difficult, and mostly we are habit training and reading her cues, but I feel we are moving in the right direction.

Most of all, she is happy and content with using the potty now.

I do hold out hope that someday she will be fully trained, but realistically, that is way down the road.

Autism Milestones

I had to accept that my son Cameron would never just, ‘get it’, never just, ‘simply understand’, every milestone that typical children accomplish would be delayed or absent all together.

Will he be able to?

This was a question I was asked a lot in the early days; whether it be followed by…attend school?…cope in mainstream school?…grow out of it?

(I even took to the Internet in the early days to ask this myself) and always, my answer, ‘…I don’t know!’. 

At this point you see the confusion on people’s faces; you immediately go on the defensive, it’s not like I have not asked these questions of the professionals; please don’t think that I have not spent hours researching for the answers online.

No one knows… no one. 

You see the autism spectrum is so vast and so unique in each person that unless the NHS are suddenly able to equip Doctors with a crystal ball, then no we don’t know and we will just have to wait and see.

May I just add this is a pragmatist’s nightmare!

I never forget one day when I started to think about his milestones and achievements; someone asked me:

‘What can he do?’ ‘What are his strengths?’

I was taken back and stuttered for a few seconds; this was a stranger in a supermarket that I had for the 1000 time made my excuses to –

Sorry, my son has autism and he’s quite inquisitive!’ 

I realised in that moment and that lady’s warm smile that for months now I had been focussing on Cameron’s inabilities.

And after what seemed like a lifetime, I started:

‘…he can tell you the workings of a steam engine.’

‘…he can tell you every make of car/truck by their logo.’ (also with engine sound effects)

’ …he’s the top of his class in maths.

Flash forward to today:

Cameron can be socially awkward but at every opportunity I use situations to bring this to his attention, as a learning exercise.

His vocal ticks are more controlled.

He copes 99% of the time in class, this was the latest milestone from parents evening and he’s enjoying learning about, “the fastest person ever!” – Usain Bolt.

On this learning journey in school he is also being taught about a balanced diet, yes he still had a limited diet to mostly beige foods but then something happened a few Sundays ago.

I was cooking a beef Sunday dinner, Cameron’s nuggets and chips ready to go into the oven on the tray when he comes bounding down the stairs:

What is that de-licious smell, mum?’

Now was not the time to educate that delicious is a taste not a smell but I have learnt to choose my battles.

That’s beef, baby.

Uurrgghhh, I hate beef.’

I saw an opportunity and grabbed it with both hands;

How about you try this delicious smelling beef, and you can have some lemonade.’



The look on his face will stay with me forever followed by the gasp and realisation that he actually, really liked it.

Mum, can I have loads of it? Beef is a meat and is part of a balanced diet.’

Thank you school, Thank you Usain Bolt!!!

This was some weeks ago now and we have had beef much more frequently since.

On a recent shopping trip we went into a butchers and he saw a hot deli with beef:

Mum, can I have a beef butty, please?’

Autism Milestones…Not your typical milestones, but milestones none the less.

“I’ve got this Facebook friend…” – Raising a Child with a Disability

Talking to a friend the other day, I was recounting the dramas we have been through recently, regarding my two-year-old’s food intake disorder.

Part of my account went something like this:

“I’ve got this Facebook friend, who had a similar experience, and what she did was….”

But, when trying to conject the perils that my ‘friend’ had been through and how this relates to us, I kind of lost the interest of the friend in front of me, presumably due to the hypothetical nature of the story.

The problem is, to me this is not a hypothetical story, nor is she a hypothetical friend.

Her story is very relevant, and she is very real.

She, and her son, are very close to my heart.

Yet, we have never met.

As much we cherish the support of our family and friends, there are some things that only those travelling the same path can totally understand.

The people that have gone through, or are going through, the same ups, downs, guilt, euphoria, anger, elation, frustration, grief.

Commonality through our children’s conditions.

Therein lies the cohort of individuals that I now wholeheartedly define as my friends.

These people, who started out as ‘friends’ in the ‘Facebook’ sense rather than the conventional definition, very quickly evolved into a group of the most valuable friends that I could possibly ask for.

These friends have played an absolutely colossal role in my emotional health.

Facebook had previously been a source of unwelcome reminders of all the things the other children are doing that my son might never do.  

Photos, videos, anecdotes, at times it was insufferable.

On the day of my son’s diagnosis, however, Facebook transformed into a safe-haven and fount of knowledge and empathy.

I made friends overnight.

Not just Facebook friends, real friends.

In 24 hours I went from the saddest, gloomiest depths of despair, to a place of hope, kindness, inspiration and expertise.

I did this through the discovery of a private Facebook group and my new ‘friends’ therein.

That was two years ago.

Since then, I have met many of them, shared some wonderful experiences and made some lifelong memories.

In the meantime, our friendships continue to be sculpted through our online communications, which is a life-line to each of us.

Our friendships grow and flourish while day-to-day we lead totally separate lives.

My second defining moment was through a Facebook support group for parents of children with acute feeding disorders.  

The founder of the group is the sole reason that my son avoided a feeding tube.

The wonderful lady in question is now a dear friend, as are many of the other mums in the same group, yet we have never met.

We connect daily for support, giggles, tears, struggles, and we rely on each other more than any of us could have predicted.

I harbour a special affection for all of my Facebook friends’ children and follow their progress with fondness.

All will message me in the middle of the night if I contact them with a problem.

All are fast to reach out when I post about my latest trauma with my son.

They are first to click ‘like’ when I post a photo of him doing something amazing*.

*not amazing to 99% of the population.

Regardless of whether or not I’ve been fortunate enough to meet my virtual friends, they are all close to my heart.

Maybe it doesn’t matter that we have never met.

Maybe it doesn’t even matter if we would get on with each other in real life.

If we are both getting what we need from the, ‘friendship’, then surely that’s all that matters?!

In fact, the dictionary definition of a friend is ‘a person with whom one has a bond of mutual affection’.

Nothing about going to the movies, trips to the shopping mall, or play-dates at the park.

The amount of time and energy that these friends have devoted to me, replying to messages, speaking on the phone, helping me complete funding forms, sending me links to specialist equipment, sharing their experiences, helping me feel less alone, would probably outweigh the time I have spent with my real-life friends, in the latter years.

I never directed this to be the case, it simply evolved.

Like a magnetic field, I am drawn to engage with, and open up to, these people, for reasons I cannot express on paper.

I salute you, Mr Zuckerberg, and I think my husband would like to buy you a beer for keeping his wife on the right side of sanity (most of the time!).

To my Facebook friends…thank you.

Why I No Longer Pray For A Cure For My Son

I no longer pray for a cure.

Terminal or life limiting conditions give you a perspective, one that’s different to most and one that you can’t really explain

When do you stop looking for a cure or a breakthrough in medical research?

I had spent years searching for the latest medical advances when finally, in 2011, we boarded a plane to Birmingham in order to take part in a new clinical trial for patients with Hunter Syndrome.

We spent five days in Birmingham.

Ethan went through assessment after assessment.

On paper, he was a suitable candidate.

We went back to our hotel room to discuss how we would afford the monthly trips to and from Birmingham, and how we could work our schedules so that J wouldn’t be too upset with us.

We even went as far as to decide which one of us took Ethan over for his first ever treatment.

The treatment scared us, but we danced around that and didn’t discuss it; instead we talked about hope – medical advances and all the other wonderful boys in America who were already on the trial.

The trial: the drug Ethan is already receiving would be put into his brain, as currently it does not pass the blood-brain barrier naturally.

They do this by first placing a port in Ethan.

That alone has huge risks, as Ethan has a very narrow airway, making intubating him a skill in itself.

Once the port is placed the drug is injected into it, a tube inside Ethan (and which is attached to the port) then bring the drug into the spinal fluid, the drug travels up the spine and into the brain and therefore, the hope is, the stability we currently see in Ethan from his typical ERT, we would see in his cognitive levels also.

Again this isn’t a cure but it is a way to keep Ethan from losing any further cognitive skills, plus his regular ERT – Ethan’s syndrome wouldn’t progress as fast.

We could have him in good health and cognitively well for a lot longer.

Imagine what it could do for a child who was only a few months old living with Hunters?

We sat with the doctor early the next morning.

We were getting ready to do Ethan’s final test and the one test which we were very frightened of: a lumbar puncture .

The doctor straightened his papers on his desk, asked a nurse to take Ethan for a walk and invited two other nurses to sit with us.

He coughed.

I held D’s hand as we watched him.

“Sit down please, guys.” He nodded at the chairs across from his desk.

I had flashbacks of Ethan diagnosis day; I knew this wasn’t going to be good.

“Do you want a cup of tea?” one of the nurses asked.

I shook my head as I stared at the doctor who was now scanning the top sheet of paper on his desk.

“Ethan has passed all our tests, as you both know”

He coughed again.

We nodded like bobble heads.

“I see here,” he glanced at the paper on his desk, “that Ethan had reactions to his ERT when he originally began treatment back in 2008.”

“Yeah.” I almost whispered.

“And Geraldine, I also see he has had a reaction as recently as 8 months ago.” He swallowed, hard.

I felt my heart drop.

I was nervous about the trial and the risks and the travel and…and all the other things that came with it…but I never thought about not being part of it.

It was a chance at life, a chance of Ethan living into adulthood with disabilities, sure, but it was going to give Ethan a fighting chance against Hunter Syndrome…a condition that medical advances might still find a cure for.

D’s voice boomed me back into the room.

“So, that’s it, is it?”

“Reactions are too risky. Eight months reaction-free is just not enough. We can’t put him through a lumbar puncture knowing he has had reactions; there would be no point.”

“Well, Doc, I can’t lie. We had it all planned, we were very hopeful, you guys let us be! We knew there were risks, Jesus, but ..but if…”  I stopped D mid-sentence.

“One question Doctor…if he were your son?” I squeezed D’s hand.

His voice bounced off every wall of the office, while one nurse rubbed my back the other tried to explain to D exactly what the doctor was trying to say.

“We can’t be part of it, can we?” I said as I felt my tears fall.

I looked at the wedding finger on the doctor’s hand, I saw his family picture on his desk…I needed to know what he would do as a father.

“Geraldine, D…if Ethan were my boy, I’d thank the doctor sitting in front of me, thank the staff at the hospital and I’d bring Ethan into the town center and enjoy your final day here in Birmingham.” He stood up, walked around to the front of his desk and placed his hands on his lap.

“If Ethan had a reaction, there is nothing any of us could do. It’s not like we can stop the infusion, like they have done with his regular ERT. This drug will go straight to his brain, a reaction will either take what he has left or kill him. So, my answer is: he is here, he is doing well; I’d bring him home.”  

He stood up, then knelt back down by my legs.

“I am so very very sorry.”

He was genuine; I could see that he was sorry.

I wiped my eyes while D thanked them all…we took Ethan and went straight to another Hunter family in Birmingham.

And that was when I stopped researching, stopped hoping for a cure (for Ethan, in his lifetime); I began to, ‘live’.

I don’t keep up to date on the trial, which is still ongoing, but I do know that it is successful and that there is huge hope for an actual cure.

I know money is a huge issue, as research and trials all cost money.

That upsets me; money shouldn’t be an issue when there are lives on the line.

Will Ethan be offered the drug if it becomes standard treatment for Hunter Syndrome?

That I don’t know, I don’t think about that… I can’t live with, “ifs..”, and, “buts…” – I need to be able to live.

But what I do know is that it will become standard treatment (eventually), meaning those younger boys or newborn boys will have a better chance at an average life than they do now.

Hope is alive and well… I do believe with every fibre of my being that they will find a cure; I just don’t believe our 13 year old boy will be here to benefit from it… that is not fair or even remotely OK… it will come too late for many but for many it will indeed save them from watching their child die and that – that – is the hope that brings me to where I am today.

Yes, I do have hope and faith in medical advances and the ongoing trials… I just don’t research them anymore – I am learning to live, laugh and love.

A Quick and Easy Home Exercise for a Child with Cerebral Palsy

It’s hard work looking after kids and setting aside time for exercise and activities can seem like a huge challenge.

As a children’s physiotherapist I always thought that the exercises and activities that I recommend could be fitted into a child’s routine easily.

Having my own children has been a total-eye opener for me.

It made me realise it’s absolutely essential that therapy should fit into a family’s everyday life, be fun and feel like time well spent.

It takes patience, commitment and precision planning to fit in the usual everyday essentials like washing, cleaning, feeding and generally trying to maintain a calm, happy household never mind finding extra time for stretches and exercises!

Believe me, I understand that it can feel like mission impossible.

What your child does at home and school is the most important factor in when and how they will (or won’t) achieve their goals.

One hour of therapy a week on its own is just not enough to make the difference.

Goals should be something that your child, you (parent or caregiver) and your child’s therapist, along with anybody else involved, should have agreed during the first time you met together to find out what would help them.

The more exciting and rewarding it will be for your child when the goal is achieved, the better.

This will help to keep everyone signed up and motivated especially to do the activities even when you don’t feel like it, because, let’s face it, as adults it can be difficult to follow a regular exercise program although we probably know we should: gym memberships anyone?!

So what can I suggest that might help you make extra time for exercise and activities without it making you feel overwhelmed?

One exercise that is really simple and easy to fit into everyday life, no matter the age of the child, is time spent lying on their tummy.

Now, I know that tummy time is generally known as something for babies but the good news is that it’s a really helpful position for children with any physical difficulties including cerebral palsy.

Here’s why tummy down time should be encouraged in all children:

1) Lying on the tummy provides a stretch to the front of the body

This is because children who have difficulty walking or who spend any amount of time in a wheelchair are more likely to get tight hips, knees and tummy muscles.

They are also more likely to develop a rounded back (kyphosis and/or scoliosis) and often their shoulders are forward and rounded.

Being in a tummy-down position provides a stretch to the front of the hips, gravity helps to straighten the knees and the back gets a lovely stretch away from being in a seated position.

Lying with arms up to the sides gives the shoulders a good stretch and keeping the face turned to one side helps to give the neck a stretch.

If your child is able to prop up on his or her elbows, their back will get even more of a stretch but please don’t worry if they can’t manage it.

Important Tip: try to make sure your child is as straight as possible and not twisting one way. Use cushions for support if needed.

2) Time on the tummy helps to develop head control and sitting balance

When your child lifts their head up to look around when they are lying on their tummy, the muscles in the neck, shoulders, back, bottom and legs are all being activated to get stronger.

These are the muscles that help to keep us up against gravity and are used during head turning, rolling, sitting, crawling, standing and walking and when moving or transitioning between positions.

Being on the tummy helps children to learn to shift weight from one side of the body to the other, right side to left side, forwards and back which is an essential part of developing balance skills.

3) Tummy-down time helps with sensory development in so many ways: Touch and body awareness

Being on their tummy provides your child with a different sensory experience.

The pressure of the floor on the front of the body helps to develop body awareness while the different textures of the floor and blankets on the hands, face and other body parts provides important touch (tactile) input.


When your child is on their tummy, they have to shift between looking directly down in front to something across the room.

This helps to develop near and far vision and strengthens the eye muscles which makes it easier to scan, focus and use both eyes together.

Speech and language

When your child lifts their head and looks around, they are stretching and developing muscles in the neck, jaw and mouth which are important for speech and language and other oral skills.

How to make tummy-down time work for your child:

– Make it part of the daily routine

– If you know that there is a possibility that your child may have any physical difficulties, start incorporating the tummy-down position for play as early as possible. This way, it becomes the ‘norm’ and a comfortable place for your child to be.

– Have a tummy time ‘tool box’.

– It can be uncomfortable for children to lie down on a flat surface right away. Make use of wedges, cushions or rolled up towels to prop your child up under the chest so they are at a bit of an angle. This makes it easier to lift up the head to look around and engage with something in front of them.

– Use toys that are appropriate for your child and have them easily available to offer distraction e.g. cause & effect, light toys, noisy toys, toys that feel great, books, puzzles, building blocks etc.

– iPads (and other tablets), phones and other technologies are awesome for keeping older kids in the tummy down position. Make it a rule that they can only play with them if they do 20 minutes on their tummies first!

The best tool to use is yourself

The more you get involved in your child’s therapy and activities, the happier, calmer and more confident they will be.

Remember to start gradually.

Build up the time

For children of all ages, if they are uncomfortable and not used to being tummy down, do little and often to begin with.

Example: 3+ minutes at a time and aim to do this five or more times per day.

For babies: ideally you want them to be getting up to 90 minutes tummy time very day by the age of 4 months.For older children: 20 – 60 minutes a day, every day, is ideal. Longer is fine too!

Important Tip: Check with your doctor or therapist that it is ok for your child to be in the tummy down position before starting if this is a new position for your child.

Children with reflux, PEGs or certain medical conditions may need some creative solutions to be able to benefit from this important tummy time down position.

If you would like help or advice on how to incorporate the tummy down position in your child’s daily routine then please do ask your therapist who will be able to give you specific ideas to suit your unique little person.

I hope this has been helpful.

To finish off, I just want to say that as therapists, we really want to support you and your child to achieve your goals, whatever they may be.

Therapy, like parenting, is a matter of trial and error.

Some things work well, some things not so much.

If home programs or therapy advice doesn’t suit your child’s lifestyle right now, let us know so we can support you to make a plan that does work.

Have fun learning and growing with your amazing child and thanks for reading!

Dear Husband, We’re a Special Needs Team…

First I believe in building upon the positive.

You are an amazing and incredible dad and husband.

You have endless love for your children and offer particular tenderness and care to our child with special needs.

However, there are a few things that have been on my mind and I’d like to take this opportunity to remind you we’re a special needs team.

If you use the last diaper, chux or incontinence care and wipes for our child with special needs, please hop downstairs, grab our stock and refill the bin in his closet.

This is more irritating than forgetting replace the toilet paper roll – well, okay, the equivalent to forgetting to replace the toilet paper roll.

While I am totally onboard with you sleeping peacefully through the night with your excessive snoring undisturbed while I reposition and hang on every scary hiccup our child with special needs could potentially have in the night.

And making sure our typical child has his superhero cape on when he gets up in the middle of the night to potty so you can effectively get through a work day.

On weekends, it would be fabulous if you could return the favor and let me sleep in just for twenty minutes.


That’s not a lot of time.

Yes, it’s not a new problem.

Your child with special needs is tremendously messy as he battles his athetoid movements while eating.

His feeding chair often looks like a food war zone.

You can take it upon yourself to dismantle it for the laundry and put it together again without waiting for me to give you permission to do so.

When you call right before a full line up therapy, doctor’s appointments, and while I’m returning emails and phone calls to the nutritionist, to the insurance company to SSI and county services it would be great if you didn’t want to know what’s for dinner.

When you use the last saline swab, oral toothette, or the use up all our child’s eczema lotion.

Please let me know so I can order more.

It’s more frustrating to realize you’re out of inventory than running out of ketchup when you have French fries.

Thank you so much for taking these things into consideration and for all of your genuine and incredible help.

Here’s a high-five and a fist bump.


The Special Needs SuperMom