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.

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.

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.

Vision

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!