Agreeing to Disagree: Parenting Kids with Special Needs

Nearly all of them have been with us through one crisis or another and I trust their judgment.

And they are all willing to take my opinions on board when discussing treatments and care plans.

All but one, anyway.

I have just never got along well with Orthopaedics.

Which is a real pity, since between Miss Z’s progressing scoliosis (curvature of the spine) and osteoporosis (fragile bones), we spend a fair amount of time with orthopaedic surgeons.

And I spend a fair amount of time during and after seeing them, wanting to bang my head against a wall.

Why?

Well, I generally find that they have very little interest in Miss Z as such.

She’s rarely acknowledged and we have had appointments where the doctor hasn’t even examined her, just looked at the X-rays of her spine or fracture. And they also seem completely taken aback if I suggest anything.

They have an approach to treating scoliosis, and it is the approach they will use, and nothing else will be considered.

Now, to be fair, I don’t think all orthopaedic surgeons are terrible people.

After all, that one on Grey’s Anatomy seems nice enough…

But seriously, I have met parents who like their child’s orthopaedic surgeon.

And I know that at the end of the day, scoliosis management is all about trying to prevent the curve from progressing for as long as possible before spinal fusion surgery becomes the only option.

I also know there are kids out there who have had surgery and are much happier for it.

But I guess I just need this information wrapped up with a bit more attention to public relations (PR) – or in my case, parental relations.

So, I’ve been wondering for several months now how Miss Z’s orthopaedic surgeon would react when I told him that I had decided to try something new.

For several years now, at the recommendation of the orthopaedic surgeon, Miss Z has worn a hard, plastic spinal brace (or a thoracolumbosacral orthosis (TLSO) if you want to get technical about it).

Initially, when she was small, the brace worked relatively well.

But as she has gotten older and bigger, we’ve faced a number of problems.

The most concerning for me are that the brace puts a lot of pressure on her PEG (which subsequently has caused problems with her feeding tube) and because it is cut so low on her hips, it makes it uncomfortable for her to sit upright or lean forward.

After discussing the problems with the spinal brace with various therapists, I decided to try a different approach – a Second Skin splint.

It is kind of a mix between a onesie and a corset. In other words, it is made from a soft, flexible material, but has boning along the back and sides to properly support Miss Z.

After a technical measuring session, Miss Z received her custom-designed splint a few weeks ago.

She sits lovely and tall in it and seems completely comfortable, too.

Plus, it has the benefit of not putting as much pressure on her PEG (since it isn’t hard plastic pushing into her tummy) and she’s able to move better thanks to the flexible material.

I counted it as a success.

But I wondered what her orthopaedic surgeon would think.

He was, after all, the driving force behind the spinal brace and I didn’t think he’d like me deciding on a different approach.

In the end, it was a comical appointment.

I explained why the spinal brace wasn’t working for us. He acknowledged the problems with the brace.

I explained how Miss Z now had a Second Skin splint and offered to show it to him to compare how it controlled her scoliosis.

He ignored the offer and suggested how to improve the spinal brace.

I offered to compromise, saying that I was happy for Miss Z to wear (a better-fitting) spinal brace at night but that during the day she was going to wear her Second Skin splint.

He didn’t comment. Instead, he organized an appointment for Miss Z to be casted for a new spinal brace.

When we left the appointment, I was initially frustrated with the conversation – or lack thereof.

But then I remembered advice from Miss Z’s first paediatrician, at the start of our special needs journey.

I was telling him about my frustration at repeated attempts to test Miss Z’s hearing.

I didn’t think anything was wrong with her hearing, but in order to get the audiologist to declare that, Miss Z had to pass a hearing test. She had taken the test several times and always failed – not because of her hearing, but because the test was beyond her developmental capabilities at the time.

After listening to my rant, the paediatrician commented, ‘You know, you don’t have to do the test if you don’t want to. She’s your child, you are the one who gets to decide.’

Obvious, I know, but it was an epiphany moment for me.

I’d never before considered NOT following the recommendations made by Miss Z’s long list of specialists. I had always assumed that as specialists, they knew best.

Five years into special needs parenthood, I have learned that sometimes I do know better than the specialists. Not because I have greater knowledge of their specialty, but because I have a much, much better knowledge of my daughter.

So, I’m OK with the orthopaedic surgeon’s approach.

He is doing what he believes is best for a child with scoliosis.

But I am going to do what I think is best for Miss Z.

Our First Hospice Visit

Death? Dying? Sadness? The end?

Until a few months ago, I’d never set foot in a hospice.

My grandmother passed away in a hospice several years ago, and while I was overseas during the short period she was there, my father talks fondly of how her last days were spent in a calm, non-medical environment, where she was at peace.

Having your child referred to a hospice, however, sounds like the stuff of nightmares.

A children’s hospice sounds like the saddest place on the planet.

A place you want to totally avoid.

Except, that wasn’t our experience.

Our 5-year old daughter, Miss Z, has always been medically complex as well as having multiple disabilities.

Although my husband and I have always known that children that suffer from Miss Z’s conditions – such as uncontrolled seizures, aspiration, chronic chest infections – often lived shorter lives, it wasn’t until last year, when things got really bad, that she was officially diagnosed as being “life limited”.

She was referred to the Palliative Care team at the hospital and her doctors began a conversation with us about resuscitation plans and what sort of medical measures we wanted to prolong her life.

We had to have painful, honest discussions, just the two of us, about what we wanted for Miss Z and where we could draw the line…and still live with ourselves.

Out of those conversations, one thing became clear to me. Miss Z hated being in the hospital and was unhappy there.

So, if/when the situation arises, I want her to spend her last days at home or in a hospice, not in the hospital.

Although hospice movements in the UK and the US are well established, Australia is sadly lagging in paediatric hospice care.

However, here in Brisbane we have been blessed with some people who recognised the importance of having a children’s hospice in Queensland – and then set out to build one.

Our family have been enthusiastic supporters and fundraisers of Hummingbird House – the first children’s hospice in Queensland (and the third in the whole of Australia).

However, there was still a part of me that really felt like we weren’t the ones who needed it.

In fact, when we had our first conversations with the hospice, I pointed out that Miss Z had emerged from her “bad patch” and was much healthier and our family was coping – so we probably didn’t need much in terms of their services at this point.

Then we had our first family respite weekend at the hospice.

And I realised how much we really did need it.

Suddenly all the responsibility for Miss Z’s care that we have internalised, that we just get on with, that sucks up so much of our daily lives, was lifted.

I didn’t have to carefully draw up all her medications and gradually give them to her at night before I went to bed.

There was no sprint to grab the suction when Miss Z started coughing. I didn’t have to keep an eye on her feed pump to make sure she was getting enough nutrition at the right speed or make sure that one of us could always see her in case she had a seizure.

All the care was taken over by a group of exceptionally kind, gentle nurses – one of whom was always with Miss Z.

At first it was difficult for me to hand over Miss Z’s care. But I gradually relaxed into it. And the nurses were quite happy for me to get involved and then step back again.

But what really made me relax was that Miss Z enjoyed it just as much as I did.

There were endless activities for her – cuddling the hospice chickens, taking a turn in the garden, lying on the waterbed in the sensory room watching the fairy lights twinkle, rolling on the floor in the lounge or the playroom, to name a few.

All the activities were accessible to Miss Z, even though she isn’t able to sit or stand independently. And when she got tired, her carer would take her somewhere quiet for a nap.

Seeing Miss Z happy and able to engage in activities with her big sister was priceless.

As was being able to sit in the garden and read a book. And not worrying about preparing meals – not to mention eating food that was vastly better than anything I could ever cook – was wonderful.

There were a few confronting moments.

During our stay, my husband and I were shown the end of life suite – where families can stay after their child has passed away to say their final good-byes.

It was beautiful, but I was overwhelmed by the thought of how much sadness that room was going to see in the years to come.

However, overall, our stay at the hospice had nothing to do with death or dying.

It was all about relaxing, having fun as a family, and making some memories.

It made me realise that our family really does need that.

And now, we can’t wait to go back.

Learning the Ukulele

Now, most of you readers don’t know me so I should probably explain the importance of that sentence.

And those of you that do know me – stop laughing!

I don’t have a musical bone in my body.

The extent of my experience with music was three years of playing the flute in the middle school band.

When I got to high school, I begged to quit, and my parents – realizing that I was musically talentless and that allowing me to quit would free them from the relentless high pitched squawking they had to endure when I practiced – agreed.

And so I went from high school to university to my working adult life, focusing on the things I’m good at – writing, running, researching, travelling.

That isn’t to say that my life was absent of music. I love listening to music, sometimes even singing, dancing or waving my arms like a conductor – usually in the privacy of my own home or a large group of people (think of a crowded dance floor or concert).

But while I appreciated music, I focused mainly on activities in which I was confident of my skills. My comfort zone.

My comfort zone not only includes doing things that I’m confident I can do well, but also avoiding things where I might look foolish, incompetent or weird.

After all, no one wants to be stared at, laughed at or judged by others, right?

When my first daughter was born, it did challenge my comfort zone – but not that much, since she was a happy and easy-going and charmed everyone she met.

And then Miss Z arrived and everything changed. My comfort zone was a thing of the past.

I had always claimed that I was no good with medical things – blood made me queasy, I had to look away from needles or injections (even on TV), and I never knew what to do in an emergency situation.

But suddenly, I had a medically fragile child with uncontrolled seizures and “no good with medical things” was no longer an option.

It isn’t something I would have chosen, but I have learned to be good with “medical things”.

My proudest moment was when an emergency services operator asked me if I was a doctor when I calmly recited all the vital information on Miss Z when calling for an ambulance.

And as time has gone on, I’ve had to learn to deal with being stared at and judged in public, too.

Being stretchered out of a large grocery store with Miss Z in my arms was probably the crowning moment of my “everyone really is staring at you” fear.

But to be honest, I wasn’t thinking about who was staring at me because I was focused on my daughter who was having a prolonged seizure.

Less dramatically, Miss Z has an uncanny ability to cough, gag, retch and vomit at the least convenient times – but I’ve learned to deal with that too, including giving any gawking or concerned passerby a pleasant smile and saying “she’s fine, its all under control”.

The strange part is, by pushing me out of my comfort zone in this way, Miss Z has also made me more willing to try new things that might not fall within my conventional idea of what I’m good at.

It started with knitting. I’m not artistic or crafty. But last year, Miss Z spent a lot of time in hospital and I needed something to do while I sat beside her bed, day after day.

Honestly, there are only so many hours in the day you play on your phone.

Someone suggested knitting. So, I went out and bought some yarn and needles and watched a few YouTube how-to videos.

I wasn’t particularly good at it, but it filled that gap in the hospital and was an excellent conversation starter with other parents, nurses and doctors.

For Christmas, my family all received dodgy homemade knitted scarves – which they were all very gracious about – and I was pretty proud of my achievement. 

It was during another visit to the hospital that I fell in love with the ukulele.

There were two hospital clowns visiting kids and they suddenly appeared at Miss Z’s bedside.

I was skeptical and about to send them away – Miss Z doesn’t interact well with strangers (let alone strangers with multi-coloured hair and red noses) and it always gets a bit awkward when entertainers expect her to respond and she doesn’t…

But then one of the clowns pulled out a ukulele and started singing a lullaby while the other blew bubbles around the bed. Miss Z immediately relaxed and smiled. 

It was one of those beautiful moments that I will remember for the rest of my life.

And when it was over I wanted to hug both clowns for giving us such a magical moment.

Since then, I’ve wanted to learn to play the ukulele. After all, if I can learn to knit from YouTube, why can’t I learn the ukulele?

My wedding anniversary is coming up and I (accidentally) discovered that my husband has bought me a ukulele as a gift.

Not a traditional gift – and I suspect he will regret it when he has to listen to me try to play – but exciting!

If I can learn just one song, it will be a huge accomplishment.

And that is something I never would have tried if it hadn’t been for Miss Z.

Operation Cinema

I’d considered taking Miss Z to the movies for a while, but never really had the courage.

I just wasn’t sure how she’d react.

Initially, I thought of taking her to one of those “mums and bubs” showings, but they’re only on weekday mornings, so clashed with Miss Z’s school.

I researched the special “autism friendly” shows but there weren’t any near us, and I wondered if the potential noise from the audience might actually upset her more.

What spurred me to action was that Miss Z went on a school excursion to a children’s theatre performance and loved it.

So, I figured if she enjoyed that, she might just enjoy the cinema.

Still, our trip to the cinema wasn’t exactly spur of the moment.

More, it was planned with military precision.

I chose to take her to “Finding Dory” not because of the brilliant message of inclusion, but because of the bright, contrasting colours, which I thought would help Miss Z, who has a visual impairment, follow the story.

Miss Z’s sister was keen to come with us, which was great because I really wanted this to be a fun social outing for both girls.

After all, going to the movies could potentially be something they can share for years to come.

But at eight years old, I wasn’t confident that her sister was old enough to be left alone in a cinema if I had to beat a hasty retreat with a crying Miss Z.

So, we recruited one of her friends and her friend’s mum – people who have known Miss Z for a long time and who understood what we were trying to achieve – to come with us.

That way, if I was forced to retreat with Miss Z, her sister would be happy to stay and watch the rest of the film with her friend.

I studied the cinema timetables.

We were going over the school holidays. I rejected the idea of going on the first week of the holidays, thinking the cinema might be busier that week, and settled on the second.

I chose a Tuesday morning (which seemed like a day of the week that wouldn’t be busy) and deliberated over the timing, finally settling on a 10.30am showing – not so early that Miss Z would be grumpy getting up, but not so late that she’d be starting to fade.

We also watched “Finding Nemo” at home – both so Miss Z was familiar with the characters and to make sure that she was actually interested in stories about plucky fish.

Finally, the planning was complete and all that was left was actually doing it.

Packing for the cinema was a bit like packing for an arctic expedition.  I had something packed for every contingency: sick bags, sensory toys, warm clothes, muslins, emergency medications, we had it all.

In the end, it was a success.

Not a huge success – an inch stone rather than a milestone – but a success nonetheless.

Miss Z enjoyed the movie. She decided before the trailers had finished that she was going to sit on my lap, not her wheelchair.

The film was a bit of a sensory overload at times, but she coped by hiding her head on my shoulder when it became too much.

She gave the seat in front of us a few kicks, but that was OK because our strategically placed friends were sitting there.

I could tell she was getting a bit impatient towards the end of the film, but she made it through to the credits.

It might seem like a whole lot of preparation and worry for something that is relatively basic – going to a kids’ movie at the cinema.

After all, Miss Z didn’t even rank in the top five misbehaving kids during the movie session when compared to the toddlers sprinting up and down the aisles and the crying baby.

But for me, our trip to the cinema was HUGE.

It has given Miss Z and her sister something fun they can do together.

It means that Miss Z can be included on outings with her sister and her sister’s friends.

It is the biggest step we have made yet on inclusion.

And that makes all the planning and preparation worth it.

 

Image Copyright: Sarunyu L
Image Editorial Credit: Sarunyu L / Shutterstock.com

Boredom Is Good

Now that she is five, I’ve noticed that things are subtly starting to change.

She seems to find doing the same thing every day just a little bit… boring.

My child is bored!

I can’t even begin to express how excited I am about this development.

She is bored! Bored! This is the best thing ever!

I give her school a lot of credit for this.

This year she started attending school five days a week, including taking the bus to and from school.

It was a huge change – one I wasn’t sure she would cope with – but she settled into her new routine well and really enjoys her teachers, her classmates, and all the activities and different challenges that school presents.

Of course, she’s still Miss Z, so she has her grumpy moments, strongly objects to getting up early to get ready for school, and there are those days where she refuses to cooperate – so she hasn’t undergone a complete transformation!

With school providing so much additional stimulation, the school holidays are now a greater challenge. Before, she was happy to have her sister (and often several of her sister’s friend) home and rampaging through the house.

But now that doesn’t seem to be enough for her.

During the last school holidays, Miss Z’s sister did a theatre workshop in the city centre. In theory, it would work well as I only needed to drop her in the morning, and her father would collect her and bring her home in the evening.

However, I was worried about getting her to the workshop in the morning because I also had Miss Z with me. Really worried.

How would we get there? What if the building where the workshop was held wasn’t accessible?

What if I had to go up a flight of stairs to sign her sister in?

What if she couldn’t cope with the trip?

I’m a worrier to begin with, and heading off into the unknown always stresses me out.

The night before, I slept badly I was so worried about everything that could go wrong.

In the end (thanks to the extortionate cost of parking) we took the bus into the city. And it was the best decision ever.

Miss Z loved riding the bus. She’s always loved movement and the bus rocked and bounced her in her special needs stroller.

The workshop started late enough that we were able to miss morning rush hour, so people on the bus were kind and helpful and the bus drivers all adored and admired Miss Z, which made her happy as she enjoys adding to her minions.

After dropping her sister at the theatre, Miss Z and I would take a brief walk around the city (usually a route that took us past a coffee shop) and then hopped back on the bus to go home.

Taking the bus every morning to drop off your sister and caffeinate your mother may not seem like the best entertainment for a five-year-old, but it made Miss Z happy.

She was all smiles and enthusiasm when we got home.

After all, she’d had a bit of fresh air, some adoration from the bus driver and fellow passengers and a change of scenery, and was now safely home for her predictable daily routine.

And I was all smiles because she had just enjoyed an outing – a new development!

The success on the bus has also encouraged me to try more outings over the school holidays and to plan more for upcoming holidays.

Having a bored child has opened up our world.

Raising Kids With Special Needs: I Speak On Her Behalf

Despite our hopes that she would be a tomboy, she declared very early on that she only wanted to wear pink – skirts and dresses only, thank you very much – and prefers ballet to playing sport.

Expectations that she’d be a bookworm have been worn away by the fact she prefers drawing to curling up with a book.

All of these opinions and preferences are part of who she is, and remind us that although we gave her life, she is very much her own person.

And it has been a (somewhat unexpected) joy to watch her grow and develop into that person.

My younger daughter, Miss Z, also has strong opinions and is not shy about sharing them.

However, because she is non-verbal, her opinions are, by necessity, translated by others.

Although we are working on communication, at the moment she is really only able to tell us if she likes something (by being happy, smiling or singing) or she dislikes it (by becoming grumpy, crying, and

scratching her ears).

Unfortunately, it isn’t always clear what she likes or dislikes.

Is she smiling because she likes the music or because she’s happy to be home from school?

Is she crying because she’s bored or because she is in pain or is it that she just doesn’t like what’s on television?

Even her father and I – the two people who know her best – often disagree about what is making her unhappy.

For example, Miss Z hates the hospital. She gets cranky the moment we set foot in the building – even if we’re only there to pick up supplies or a prescription.

Logically, I assume that she hates the hospital because she is reminded of all the times she has had painful procedures there, or been unwell, or been poked and prodded by doctors.

But does that mean that she is scared of the hospital? Or is she angry that I’ve taken her there?

Or perhaps it has nothing at all to do with memories – maybe she thinks the air conditioning is set too high or she doesn’t like the noise or gets bored and frustrated with all the waiting.

I often hear parents of non-verbal children say things like, “I am her voice,” or, “I know what she’s thinking”. These statements make me uneasy.

While I am Miss Z’s voice, in that I am her mother and her advocate, I can’t speak for her, only on her behalf.

And this is because, quite honestly, I don’t know what she is thinking.

I can guess what she is thinking, and sometimes she shows me very clearly what she is thinking, but I don’t have a psychic connection to her.

But oh, how I wish we were psychically linked.

I really want to understand how she views her life.

I wish I could know how much she comprehends of the world around her.

I wish I could find out the reason she seems grumpy so much of the time – is it frustration, boredom or pain? – and what I can do to help.

And I even wish I could understand why she likes some cartoons and not others or why she loves music by ABBA as much as she does (she really, really loves them).

I’ve always read with interest things written by people who have some of the same issues as Miss Z, such as online posts about “how it feels to have a seizure” or blogs written by people with disabilities.

It helps me to understand some of what she might be feeling.

But at the end of the day, no one knows how it feels to be Miss Z or what goes on in her head – except her.

During a recent communication workshop, a speech therapist told the story of a non-verbal young man. For years, his mother had taken him to a riding for the disabled programme.

She was convinced that he enjoyed and benefitted from the experience, so turned her schedule upside down to make sure he attended every week. Years went by.

Then, one day the young man was given access to a communication device.

What were his first words?

“I hate horses, they stink!”

I will keep working to communicate with and better understand Miss Z.

It is something that I will never stop doing.

I just hope that I don’t someday learn that she actually hates ABBA!

Special Needs Parenting: Knowing When To Let Go!

From the moment she arrived, she was happiest when she was snuggled up against me.

She would happily spend her day strapped to my chest in a baby carrier, her head resting on my chest.

As she has grown older and bigger, I’ve had to give up the carrier, but Miss Z still loves her cuddles.

On weekends, I bring her into bed with me in the morning and we snuggle and doze under the covers.

 It is clear that Miss Z feels safest and happiest when she has physical contact with the people around her.

This is just one of the many reasons I find it hard to let go when it comes to her.

So, when my husband suggested that I take our older daughter, Vegemite, to visit my family in the US after Christmas, I was keen – but reluctant to leave Miss Z.

At first, I toyed with the idea of taking Miss Z with us. I knew it was unrealistic – she is simply not healthy enough to cope with a long haul flight.

Not to mention that no travel insurance company would ever consider covering her, which would leave us for a month in the US with a medically fragile child with no health insurance.

Not a good idea.

And that’s before we even start considering how Miss Z feels about new and unfamiliar places or cold weather.

It just wasn’t going to work.

So, I reconciled myself to making the trip without her. But I still couldn’t bring myself to book the flights.

The past year has not been kind to Miss Z – she has been unwell almost constantly with various chest infections.

It has meant that we’ve had to come to terms with the fact that she has a life limiting condition.

And it means that I have realized how quickly her health can go downhill.

My greatest fear was that she would become gravely unwell while I was away – and I wouldn’t be able to get back home in time to be with her.

I think it was this fear, more than anything else, which made me drag my feet on booking the flights.

After all, I’ve been away from Miss Z before – both for work and pleasure – and survived, but this felt different.

Everyone kept telling me how it would be good for me to get away, to have a real break, get some rest, some respite from the constant demands of caring for Miss Z.

I knew they were right, but it was hard to let go.

There was also a little bit of fear that Miss Z would cope too well with my absence. What if she didn’t miss me? What if she was just as happy to get cuddles from anyone else?

What if all the work I do every day to make sure she is happy and healthy isn’t really all that necessary after all?

In the end, what finally made me to book the flights was Vegemite.

Being Miss Z’s older sister has meant that Vegemite has had to become independent from an early age.

For better or worse, she has had to take on more responsibility and grow up quicker than other kids her age.

And I’m hugely proud of her for being such a brave and confident girl.

But at seven, it suddenly feels like she is growing up quickly, and with the constant medical drama surrounding Miss Z for the past year.

I’ve missed spending time with her – and soon, she won’t want to spend time with me anymore.

So, at last I organized our trip and after Christmas, Vegemite and I flew to the US. And I got my respite. I ate and drank a lot. I read a lot of books and took a nap every afternoon.

I taught Vegemite how to slide down a snowy hill on a roll-up sled. I proved that I’m really not very good at trivia. I spent time with two of my best friends from school.

And Vegemite got to spend time with the American side of her family and be the absolute centre of attention for three whole weeks.

She also got my undivided attention. We got lots of cuddles (aided by the fact we were sharing a bed) and lots of giggles.

I spoiled her rotten a lot of the time – and we both enjoyed it.

I even taught her how to eat dinner from a vending machine (crackers and crisps first, then the chocolate).

I missed Miss Z – a lot – but was comforted by my husband’s daily updates, which reassured me that she was staying healthy.

And, I realized, my absence gave him the opportunity to enjoy some one-on-one time with Miss Z – something he doesn’t often get with me always on hand to care for her.

Letting go isn’t always easy as a parent of a child with special needs. We become so accustomed to managing and caring for our child that we become convinced that no one else can do what we do.

However, sometimes it is important to loosen our grip a little.

For me, it gave me the opportunity to enjoy some special time with Vegemite and let Miss Z spend some special time with her father.

And it gave me the chance to come back, refreshed and ready to tackle 2016 and make it our best year yet.

Raising kids with special needs: Should she go or should she stay?

In the early days, this was an easy vow to keep. She was a baby. She was small and easy to carry.

Sometimes I strapped her to my chest in a baby carrier. We spent a weekend in Sydney with her in her carrier – visiting the Opera House, the aquarium, the Botanical Gardens, eating in nice restaurants.

Other times, I took her in her stroller. Feeling lonely and isolated in the early days, it was often a relief just to get out of the house and push her around a shopping centre or for a walk in the park.

However, as she has become older, she has become less portable. At four-going-on-five years old and weighing nearly 20kg, the days of carrying her around are gone.

Gone too is the easy to fold up stroller – replaced by a much heavier and more cumbersome special needs model.

But something even more fundamental has changed: Miss Z has become a homebody.

She is happy at home and shows no desire to go out and do things or meet people.

She never seems to feel the need for a change of scenery or even a breath of fresh air. She is quite contented to spend the entire weekend at home with her family.  She is happy to go to school.

She tolerates walks in the park (so long as she keeps moving – stopping is not an option). We often go to Sunday brunch at the same café, and she’s generally OK with that, too.

But any place new, crowded or noisy is not tolerated.

Shopping with her is difficult at best. She hates grocery stores – I think because the chiller cabinets make her cold – and will fuss, grumble and scratch her ears her whole time in the store.

Shopping malls get a similar treatment – she is worse than my husband in demanding we get in and out in record time.

Small shops are nearly impossible as they pose accessibility issues as well as not being well tolerated by Miss Z.  She gets frustrated quickly in most restaurants and cafes.

I can’t really blame her for this, since she’s tube fed, and watching other people eat and drink must be fifty shades of boring.

Sometimes I can jolly her through a quick meal by holding her on my lap – although as she grows, this becomes more of a challenge.

Her lack of tolerance for public places means that I haven’t been daring enough to try anything that might push her boundaries, such as taking her to see a movie.

Visits to museums or zoos or similar places tend to be brief, planned well in advance, or involved my husband and I taking turns comforting her, while the other explores with Miss Z’s older sister.

It will come as no surprise that she isn’t much of a party girl, either.

But her preference for home and her obvious dislike of going places poses a conundrum.

Do I take her out – even if she doesn’t like it? Or do I leave her home – even if it is depriving her of an experience?

I want Miss Z to get out, see the world, and try new things. If we never try anything new, then we will never know if there is something that she might really enjoy.

At school recently, they discovered that Miss Z loves to paint. I didn’t know this because I had never tried to paint with her.

What if there is something out there that Miss Z loves as much as painting – orchestral music or aquariums or movies – that we are missing simply because we haven’t tried it?

The activist in me rails against the idea of keeping Miss Z at home.

After all, how can I expect people not to stare and to become more comfortable around people with additional needs if they don’t see them out in their community?

I want Miss Z to be out and active in her community. But she wants to be at home. And her opinion is important, too.

he faces so many challenges in her daily life, why can’t she be allowed to stay home and relax if that is what she wants?

Why should she be expected to be a flag carrier for the disabled community?

Or endure an assault on her senses, simply because I think she might enjoy watching a movie in the theatre, rather than in the comfort of her own home.

It is a balancing act, and we don’t always get it right. And I doubt we ever will.

But I hope that don’t give up trying, because on those rare occasions when she surprises us by enjoying something we didn’t expect she would, it is golden.

Raising Kids With Special Needs: Our G-J Tube Journey

I know this because I felt all those emotions and more when, at the age of 20 months, Miss Z got a gastrostomy (G-tube).

I have a photo of Miss Z and her sister, taken on Pancake Day – both girls with a pancake in front of them, which they ate with enthusiasm after I’d taken the picture.

Five months later, Miss Z had lost her ability to swallow and was being fed entirely through a nasogastric tube.

Even now – three years later – I look at that photo and wonder what I did wrong, what I could have done differently so that Miss Z would be consuming pancakes with the same zeal today.

However, it was also an easy choice.

In fact, by the time Miss Z got her G-tube, we were desperate for it.

Miss Z was no longer able to take anything orally and she hated the nasogastric tube with a passion.

And although Miss Z has little purposeful use of her hands, what ability she has was employed, 24 hours a day, 7 days a week.

With the sole objective of pulling the tube out of her nose.

For a girl with no fine motor skills to speak of, she became surprisingly adept at snaking a finger between her nose and the tube and giving a mighty tug.

After a few months of making regular trips to the hospital, where the nurses would wrap Miss Z in a sheet and hold her down to re-insert the NG tube while she screamed;

we were begging for a G-tube.

And when Miss Z finally got it, life became so much easier.

Suddenly, we could focus on other things – not just getting nutrition and medications into her.

For three years, Miss Z did amazingly well with her G-tube.

Then the chest infections struck.

Tests showed that Miss Z had severe reflux and was aspirating food and vomit into her lungs, which was contributing to the chest infections.

We were given two options by the doctors.

She could have a gastrostomy-jejunostomy (G-J) tube, which would allow us to feed her directly into her small intestine.

Which would stop the reflux and vomiting because there would be no food in her stomach to bring back up.

Or she could have a fundoplication, which wraps the top of the stomach around the oesphogus, making it more difficult for the contents of the stomach to come back up.

I agonized over the decision.

Suddenly it felt like we were right back where we started three years ago – making decisions for Miss Z that I didn’t want to make.

And wondering how we had got to where we were and what I could have done to prevent it happening.

In the end, the decision was taken out of our hands.

The surgeon decided that Miss Z’s stomach was too small for a fundoplication, so a G-J tube was the only option.

Agreeing to go ahead with the G-J tube felt terribly sad.

Miss Z’s condition is life limiting and I felt like we were taking another step towards exhausting all our medical options.

I also worried that the G-J tube, which requires continuous feeding, would affect Miss Z’s quality of life.

She is an active little girl and loves swimming and rolling on the floor – activities that aren’t necessarily compatible with being constantly connecting to a feeding pump.

I also worried about the extra strain it would put on our family.

Another responsibility, another thing that we have to deal with if we want to set foot outside the door with Miss Z.

And it is another thing that can go wrong.

I worried about managing it so much that I started to have dreams about making mistakes with Miss Z’s feeding.

In my dreams, Miss Z would get unwell and I would be wracked with guilt while everyone around me accused me of getting it wrong.

Of forgetting, being incapable of looking after my own daughter.

It was with a heavy heart that I took Miss Z for her surgery.

I knew it was the right choice, but it wasn’t a happy one.

The surgery was quick and easy – I barely had enough time to get myself a coffee and muffin from the hospital café before the doctors were ringing to tell me that all was well.

They used the same stoma (hole in her tummy) as the G-tube, so it was just a case of putting the new tubes in the right places.

She woke up happy and didn’t show any signs of pain. Once she was awake, the dietician arrived to create a feeding plan.

We had to slowly increase the rate at which she was fed to make sure she could cope.

However, once we hit the target rate, she would be able to have 7 hours a day free.

This was a pleasant surprise for me, since I’d expected her to be connected to her feed for 23 hours a day.

After a bit of begging and cajoling on my part, Miss Z was sent home that evening – happy and well.

The next week was a busy one, since Miss Z was starting school and we were adapting to a new feeding routine.

I was so focused on the start of school, getting the routine right and figuring out how to make her feed pump and formula more easily transportable,

I didn’t even think about how Miss Z had improved with the G-J tube.

And then, on Saturday afternoon, Miss Z pulled out her G-J tube.

I don’t think she did it intentionally – it was more likely to have been an accident when she was rolling on the floor.

We went back to the hospital, but because it was the weekend and the G-J tube needs to be inserted under general anesthetic using a special type of X-ray, they couldn’t put it straight back in.

So, she was sent home with a temporary G-tube and plans to schedule the procedure to reinsert the G-J tube sometime soon.

It has been that little step back that has made me realize just what a big difference the G-J tube has made.

It has stopped her reflux, which has made her chest sound much clearer. Her breathing no longer has a rattle to it.

She sleeps soundly through the night without being woken by coughing or vomiting.

With the G-tube back, all our progress has been lost.

She is miserable. She is retching throughout the day.

Her cough keeps her awake at night and she requires regular suctioning. Her breathing once again sounds like Darth Vader.

And despite my best efforts, she vomited all her medications this morning.

And so, I’ve been on the phone with the hospital today, pressing them to squeeze her into the surgical schedule as soon as possible.

I may not have been enthusiastic about the G-J tube, but I’ve quickly learned its value.

It may not be what I originally wanted for my daughter, but it is what she needs and it improves her quality of life.

And that, in the end, is what is truly important.