Miss Z has recently turned four years old.  She is no longer a baby – she is a little girl. And even if she is a little girl trapped inside her own body, she still deserves to be treated like a four year old, not an infant.

One of the greatest challenges in treating her like a four year old is coming up with ideas to entertain and stimulate her.

Of course our team of speech, occupational and physiotherapists are never short of suggestions on activities to do at home, but that isn’t entertainment, that’s therapy.

Therapy isn’t always fun – in fact in Miss Z’s mind, it never is. And therapy involves me (or someone else) doing the activities with her.

We do our share of therapy at home, but we can’t spend the whole day doing it – Miss Z would hate it, her older sister would claim neglect, and I would never get anything else done.

At four years old, Miss Z is quite happy to spend time on her own.

In fact, she enjoys being left on the floor to do her own thing, and I’m keen to encourage this independence.

That said, just leaving Miss Z lying on the floor feels a bit like poor parenting.

And while not wanting to force her to participate in ‘therapy’, I do want her to explore, discover and benefit in the same way other children do from more traditional play.

Miss Z’s therapists, carers and I have come up with a number of activities that Miss Z can do on her own, without my constant involvement, but are more developmentally and intellectually beneficial than just lying or rolling on the floor.

Information on ways for children with multiple disabilities to have fun or entertain themselves is scarce, so I wanted to share these ideas with other parents in a similar situation.

And it isn’t all altruism – I’m hoping other parents will share their ideas, giving me some new activities for Miss Z, too.

However, when reading my suggestions, please keep in mind that all children have different abilities and what might be a great activity for one child to do independently may require greater supervision – or not be appropriate at all – for another.

You know your child best. So, here are Miss Z’s favourite independent play activities (in order of her preference at the moment):

The big crinkly blanket

When Miss Z is on the floor, she loves to rock from her back to her side (she can’t quite manage a full roll) and kick her legs.

Recently, her occupational therapist gave us a silver emergency blanket – the type that can be found in some first aid kits and are given to runners after a marathon to keep them warm.

They’re also known as space blankets or foil survival blankets.

It is very thin, virtually indestructible, and makes a fantastic, crinkly noise whenever it moves.

Miss Z loves to lie on it, roll on it, and kick it with her feet.

Most kids love them, so it is a great activity to encourage Miss Z’s older sister to join in, too.

The occupational therapist says it strengthens the understanding of cause and effect, but all Miss Z knows is that it makes a great sound.

Sensory quilt

Since she has limited purposeful use of her hands, Miss Z explores mostly by using her mouth or her feet.

A local quilting charity gave us a sensory quilt for Miss Z to explore and she really enjoys it.

A sensory quilt is a quilt made from fabrics of different textures and colours.

Ours is quite large, so it takes some to explore the whole thing.

Miss Z loves to seek out her favourite squares and rub her mouth along the satin ribbon strips.

Our quilt also has various objects sewn along the edges of the quilt for her to explore, which includes everything from ribbons to knitted flowers to big buttons and even a small pair of plastic maracas.

Some of the objects aren’t appropriate for a child who could put the objects in their mouth (they’re fine for Miss Z).

Although Miss Z loves kicking the maracas, I’ve stepped on them several times in bare feet and am not so enthusiastic about them.

If you don’t know any quilters and don’t feel like getting crafty yourself, I’ve also modified this idea, using a variety of cheap placemats.

I’ve found a number of inexpensive placemats in different materials (plastic, bamboo, felt) in discount shops and I scatter them around her on the floor.

Although not quite as exciting as the quilt, she will still explore them as she inches her way around the floor.

Hanging toys

When she was a baby, Miss Z loved her baby gym, even though she rarely touched the toys that were hanging above her.

When she got older, we tried her in a “little room” – a specially built area with objects hanging from it that the child can explore and play with – to variable success.

However, Miss Z seems to tolerate my own version much better.

There are lots of examples online of very handy people who have built their own little rooms.

Since I’m not that handy, I took the easy route and bought a cheap baby gate.

I hung a number of household objects with different textures, weights, temperatures, sounds and sizes from the rails with elastic.

I also have them hanging low enough that Miss Z doesn’t need to reach up to touch them – they all nearly touch her.

When she is rolling on the floor, I can hang it above her (either over her upper body to encourage her touching things with her hands, or over her legs, so she can kick the objects), by resting the ends of the gate on two footstools or the sofa and a little table.

There are days when Miss Z obviously enjoys hitting or kicking particular objects.

There are other days when she is clearly annoyed by all these objects hanging in her way.

But you never know until you try. It makes me happy to see Miss Z “playing” independently – or at the very least keeping herself entertained.

And it gives me the precious opportunity to do a few chores, give her big sister some attention, or even just enjoy a cup of tea.

What ideas have you come up with to encourage your child with special needs to have fun?

When Miss Z goes into the hospital, I go with her.

We are a two-for-one deal. Hospitals are frightening places at the best of times, let alone when you are a 4-year old girl with a visual impairment and a limited understanding of what is happening.

No one likes children’s hospitals.

They’re not happy places, no matter how many enthusiastic volunteers, visiting therapy dogs, colourful murals or bedside balloons there may be.

It is the stuff of parents’ nightmares – no matter if your child is there with a broken wrist or a life-threatening condition.

No one – apart maybe from the people who work there – actually want to be there.

But, I have to admit to often feeling a huge sense of relief and calm when Miss Z is admitted to hospital.

I relax. I let go of that breath I’ve been holding.

I wouldn’t go so far as to say I’m happy – after all, we are there because Miss Z is unwell – but I find it a comforting place to be.

I know, I know. I read that last sentence and even I think I’m crazy.

Maybe I’m suffering from a sort of Stockholm syndrome – where hostages grow attached to their kidnappers.

Forced into hospital (generally by bacteria, viruses or seizures instead of kidnappers), I develop an attachment to the very place and people who are ‘imprisoning’ Miss Z, and by default me.

Strange, maybe, but true.

As a working mother, my life is constant triage. I’ve got a work deadline, Vegemite has a school event and Miss Z is unwell – what do I do first?

Ballet class, hospital appointment, conference call – how do I do them all at the same time?

Added into the triage mix is a never-ending ‘to do’ list of all the little (and not so little) activities of life: grocery shopping, health insurance claims, dog training, taxes, post office, prescription refills, hair appointments, emails, filing, ordering more formula or medical supplies for Miss Z, tidying, and so on…

But when Miss Z and I are in hospital, all that other stuff is put on hold.

I can pause all those other activities. My focus is entirely on Miss Z and getting her well.

Yes, that does sometimes involve a constant stream of text messages to make sure Vegemite is picked up from school and that work tasks are postponed or reassigned.

But at the end of the day, the responsibility is no longer on my shoulders and (as much as I hate to admit it) the world carries on without me.

That is the source of relief, the feeling of comfort, and the reason for my Stockholm syndrome.

It feels so good to put all my attention and energy towards just getting my little girl healthy again.

I have time to think about what the doctors have said – and even better, to follow up with them when, an hour later, a new question springs into my mind.

When Miss Z cries, I can cuddle her – not sit in my office and try not to listen to her carer calming her.

I can sit by her bedside and watch her sleep to reassure myself she isn’t getting worse, rather than trying to keep an eye on her while making dinner.

I don’t have to second-guess myself regarding Miss Z’s health when we’re in the hospital either. Miss Z has grumpy days, where she does little besides fuss and cry and sleep.

She also has days when she is unwell, where she does the exact same thing.

There have been nights when she has screamed inconsolably for hours for no apparent reason, when she’s gasped and wheezed for breath, when she hasn’t been able to keep medicine or formula down – then come morning she is perfectly happy and well.

I may know Miss Z better than anyone, but I spend a lot of time trying to decide if I should a) ignore it; b) give Panadol; c) take her to the GP; or d) go to the Emergency Department.

I am a mother, not a medical professional, so it can be hugely comforting to be able to call a nurse at the press of a button and ask for advice on the spot.

I’m not saying a trip to the hospital is on par with a yoga retreat – far from it. I would do just about anything if it meant that Miss Z never had to darken the door of our children’s hospital again.

But, whether it is Stockholm syndrome or just a funny kind of respite, being here is not always such a bad thing.

So, I suppose it is only fitting that when Miss Z was born, she was missing her label.

When she was first born, we assumed that her missing label read “healthy neurotypical infant girl”.

OK, that’s a lie. When Miss Z was born, we knew nothing about special needs, so wouldn’t have had a clue what “neurotypical” meant.

We would have just called her “normal”.

But it turns out that whatever was written on that missing label, that wasn’t it.

At the age of 6 months, she was given a new label: “epileptic”.

That was swiftly followed by one of my least favourite labels: “global developmental delay”.

But neither of those quite got to the heart of what should be on her label.

They were like the washing instructions, not the front-of-the-box, big letters, this-is-what-it-is label.

A pediatrician briefly put a “cerebral palsy” label on her, but it didn’t stick.

Occasionally a medical professional tries to stick it back on, but that label lost its adhesive long ago.

At around a year old, she was given a new label: Rett Syndrome. I did my research and was sure this one was it.

She ticked nearly all the boxes – her paediatrician and geneticist were sure that was her missing label. Except the genetic tests said it wasn’t. So, that label was peeled off.

In the meantime we were furiously accumulating symptom labels: cortical visual impairment, apraxia, microcephaly, hypotonia, dysphagia, complex motor stereotypy, scoliosis and osteopenia – to name but a few.

We generally had no clue, at least initially, what these labels meant.

It was like the list of ingredients on the label of instant noodles – lots of long, complicated words that have no meaning to you, but you know instinctively that they’re not good.

We kept searching for Miss Z’s front-of-the-box label. T

he geneticist gave her a “CDKL5” label and it stuck for about six months until the genetic test came back, telling us that it wasn’t our missing label either.

Another label was peeled off and thrown away. After over a year of fruitless searching, our paediatrician suggested that we make our own label: “atypical Rett Syndrome”.

He reasoned that Miss Z fit a clinical diagnosis of Rett Syndrome and the “atypical” could cover the fact that she didn’t actually test positive for it.

So, we printed our own label and it has been stuck on her ever since.

The only problem is that we don’t really know if our label is right. E

very medical professional has his or her own opinion, ranging from “she is absolutely a Rett girl” to “she isn’t remotely Rett-like”.

Miss Z is like a tin can with no label that you find at the back of the cupboard – you think it is probably green beans, but you just don’t know for sure.

And we may never have a clear answer.

Being undiagnosed – unlabelled – is hard, although it is harder for me than for Miss Z.

I worry constantly about her future, as we have no idea what her prognosis will be.

I wonder if there is a treatment or therapy out there for her specific condition that might help – and that we aren’t getting because Miss Z is undiagnosed.

I feel like we are guilty of not doing enough to find out her diagnosis.

Surely there is another test?

A research study?

Something?

Whereas, Miss Z just carries on being her own unique, hilariously grumpy person who loves listening to Beyonce in the bath and being held while she sleeps, fakes exhaustion whenever a therapist enters the room, and can give the deadliest dirty looks on the planet.

No label is ever going to capture even a fraction of whom she is.

But that doesn’t mean we won’t stop hoping that someday the right label finally sticks.

Doctors were sympathetic, but most took little interest. Fortunately, our GP and Miss Z’s neurologist did: an adjustment to her seizure medication and a week at a sleep clinic solved the problem.

For the first time in over a year (for me) and in her life (for Z), we were getting a good night’s sleep.

We enjoyed two and a half years of good sleep before Miss Z began to experience sleep problems again late last year, caused mainly by poor health.

Sliding back into the pit of sleep deprivation has reminded me of several things I had almost forgotten:

Sleep is essential for quality of life – hers and mine.  

Everyone claims to be tired these days. It almost seems like a status thing.

But research has repeatedly shown the importance of a good night’s sleep.

Sleep is necessary for a child’s healthy growth and development.

According to the US National Heart, Lung and Blood Institute, deep sleep triggers the release of a hormone that promotes normal growth and also boosts muscle mass and helps repair cells and tissue.

It is also critical for performance.

A Harvard study found that people who slept after learning a task performed better when tested.

Other studies have found that sleep deprivation can degrade reaction time, communication, attention and mood by 20-50%.

Miss Z has Everest-sized developmental mountains to climb.

She needs every advantage to help her on this process. And that includes being well rested.

And as her parent, I am climbing that mountain alongside her. But sleep deficiency can change brain activity, making it more difficult to make decisions, solve problems, control emotions and cope with change.

Basically, it disrupts the skills that are most critical for me in order to successfully advocate for Miss Z.

Sleep deprivation is also linked to depression and other mental health issues.

This is important because many parents of children with special needs struggle with depression, anxiety and other mental health issues.

With all the research showing how important sleep is for our kids – and for us – why is it not a greater priority?

After all, it effects our very development, wellbeing and happiness.

A lot – if not most – children with special needs suffer from sleep problems.

According to a study done by the UK charity Scope, children with a disability are more than twice as likely to have problems with sleep as other children.

The causes behind these sleep problems are as varied as the children themselves.

Sleep issues are commonly associated with some disabilities, other times the problems may be behavioral.

Whatever the underlying cause, exhaustion is the one thing that unites most parents of children with special needs.

If you are a sleep-deprived parent of a child with special needs, there is very little help out there.

Most advice for dealing with sleep problems in children with special needs seems to be along the same lines as the advice given by the baby sleep ‘experts’: establish a bedtime routine, put the child to bed tired but not asleep, make the bedroom a calm environment, etc.

Frankly, while they’re all good suggestions, none even begin to address why Miss Z isn’t sleeping at night.

If the help and advice out there for Miss Z is scarce, it is nearly non-existent for parents suffering sleep deprivation.

Yes, my husband and I take turns and divide the night between us, but that doesn’t address the problem when Miss Z wakes 5-10 times a night and can cry inconsolably for up to an hour in the middle of the night.

We have access to respite services, but not overnight respite.

Miss Z’s doctors are sympathetic, but offer little in the way of solutions.

There seems to be a professional expectation that she will always be a poor sleeper, and as a result, we will always be exhausted parents – that’s just the way it is.

Miss Z’s sleep problems feel like a burden that we are expected to bear on our own.

This needs to change.

Medical professionals need to see sleep as an important issue – both for our children’s development and also for the quality of life for the whole family.

As parents, we need to stop viewing our exhaustion as some sort of symbol of dedication to our children or how tough we are.

Instead, we need to push harder for it to be taken seriously; for those supporting our families to understand that sleep problems affect our very quality of life.

I accept that not every sleep problem has an easy answer or a quick fix, and in some cases there may not be a ‘fix’ at all.

However, dismissing sleep problems and leaving children and parents to suffer them does no one any good.

From very early on, I knew that I wanted to get a dog to support Lil Z, our daughter with multiple disabilities.

I firmly believed (and still do) it would improve her life.

It became my obsession.

Our journey started with a whole lot of research. I read anything I could find and spoke to organizations that provided assistance dogs, dog breeders, dog trainers, and a very helpful woman who uses an assistance dog herself. Nearly every one I spoke with was convinced that their approach, their breed of dog, their programme was best for us.

In Australia, a fully trained, registered assistance dog costs around $25,000 – so it’s not something to go into lightly.

Add to that the responsibility for caring for the dog, and it wasn’t something we wanted to rush into.

I realized that Lil Z isn’t a typical candidate for an assistance dog.

In fact, what we really wanted was to pick-and-choose amongst the skills of several different types of assistance dogs: one that can provide companionship, alert us when she is having a seizure, and help control some of her behaviours, such as calming her when she is upset and stopping some of her repetitive movements.

We also wanted to choose our own breed of dog. Our daughter spends a lot of time rolling on the floor and requires medical equipment, so we didn’t want dog hair everywhere.

The dog would also need to be big enough for her to be able to reach it from a wheelchair – a dog sitting on her lap was not an option.

And we needed a dog that was both intelligent and extremely good with children.

We decided that a good choice for us would be a golden retriever – standard poodle cross (called a Groodle or Goldendoodle).

After more research and lots of emails and phone calls, I had found us a Goldendoodle breeder and a dog trainer who not only had experience, but also understood what we were trying to achieve.

When the litter of puppies arrived, we spent considerable time choosing the right one. There is no way to know for certain which puppy would be the best assistance dog, so we looked for a puppy that responded well to Lil Z.

After two visits, we chose our puppy, and a few weeks later, Ben came to join our family. Unfortunately, Lil Z had a major seizure the morning after Ben arrived and instead of bonding with her new puppy, she spent the week in hospital.

However, Ben stepped easily into the role of supporting Vegemite, our older daughter – and they have since formed a special bond of their own. Starting immediately after Ben arrived, we’ve been working hard to make him what our trainer calls ‘bomb proof’.

He has to be able to go everywhere without getting scared or anxious.

So from a very early age he has been out and about with us – going for walks, the school run, out for coffee (I’ve personally ensured he has no fear of cafes or cappuccino machines), and anywhere else we go.

He has also been attending training classes to learn his obedience basics. At 9 months, he is a friendly, social and (mostly) well-behaved dog. So, we’re now preparing to increase the intensity of the training and begin to focus on his role as an assistance dog.

Its too early to tell if we will be successful in training Ben to a level where he can become a registered assistance dog, able to go everywhere with Lil Z. It is not easy – it is a learning process for us, as well as Ben, and is incredibly time-consuming.

At the end of the day, we will get out of it what we put into it – which sounds great but when managing jobs, two children (one with special needs) and all the rest, practicing dog commands can sometimes slip.

Despite the uncertainty, we don’t regret getting Ben.

He has become (in the words of our trainer) a ‘family therapy dog’. He is already helping with therapy activities and learning to calm Lil Z with his presence.

And he enthusiastically cleans her up when she’s been sick (we call him the vomit response dog). His love and devotion to Vegemite gives her emotional support, which she needs as the sibling of a child with special needs.

And the rest of the time, the two of them just have lots of fun.

He fills the gap of playmate that has been left by Lil Z’s disabilities. Ben’s happy – and often just plain silly – nature cheers up everyone and he’s always good at lightening the mood after a hard day.

Taking him for walks or playing with him in the garden blows away the cobwebs and makes you feel better.

And we all love to have a cuddle with him. It has been hard work and will take a lot of dedication and time over the next year or two.

But choosing Ben to be our DIY assistance dog has been the right choice for us.

Lil Z had been admitted to the hospital following a major seizure. She was less than a year old, non-verbal and unable to sit or stand independently.

We hadn’t yet managed to get her on the right combination of anti-epileptic medication to stop her seizures, so it was a scary time.

Added to that, Lil Z was a terrible sleeper and rarely slept more than 2 consecutive hours during the night.

I had tried everything to get her to sleep.

Our house was full to bursting of books written by baby sleep experts, none of which worked in the slightest.

We’d done everything from controlled crying to co-sleeping and none of it worked.

I was an anxious, exhausted wreck, surviving on an unhealthy combination of caffeine, sugar and adrenalin (thanks to the regular ambulance rides to the hospital).

It was in this state that a music therapist came to see us.

Ironically, Lil Z was having a nap at the time, so we talked a bit instead.

I told her about our sleep problems and she suggested that music might help. Since I’d already tried the singing lullabies route, I was doubtful.

Later that day, she stopped by again to give us a CD called “Music for Dreaming” and suggested it might help settle Lil Z.

The music is specially arranged for relaxation and reducing stress.

The rhythm of the music replicates the human heartbeat and the tempo is that of a resting human pulse – all of which should bring about a sense of calm.

Now, I wish I could say that a miracle occurred the first time I put on the music, and that Lil Z fell asleep instantly. She didn’t.

But something unexpected happened.

It soothed me.

In the middle of the night, with a screaming baby, I could rock her and listen to the music and feel just a little bit calmer.

And when I was calmer, Lil Z was calmer – not necessarily ready-to-go-back-to-sleep calm, but less screamy.

I started playing the music on repeat to her overnight.

And even after Lil Z finally started sleeping through the night (thanks to a medication adjustment and a week in a sleep clinic), I kept playing her the music throughout the night.

I also copied the music onto my phone and iPad.

That way, when Lil Z is in the hospital, I can play her the music – something familiar to make her feel safe and secure.

Lil Z now shares a bedroom with her big sister and they both fall asleep listening to the music every night.

Of course this was only the start of our love of music. Lil Z and her sister now enjoy singing and dancing (or in Lil Z’s case wiggling and kicking).

We’ve introduced a dance music playlist to our bathtime routine, which heavily features Katy Perry, Taylor Swift and music from the movie “Frozen”.

It is now Lil Z’s favourite part of the day.

My husband plays Lil Z music from Smooth FM when she’s grumpy and having a bad day.

And music therapy is one of her favourite activities at school.

Hans Christian Andersen wrote “where words fail, music speaks”.

Lil Z may not have words, but she does speak to us through music.