If you have a child with low hand function, non-verbal and non-mobile, where do you find toys for them?

Everything we find that Charlie has the capacity to play with is in the Fisher Price section of baby and toddler toys. Bright colours, lights, music – those are all well and good, but the context is always so babyish.

It’s a farmer and his cartoonish animals on a roundabout, or a simple sensory cube with mirrored sides and primary-coloured knobs to press, twist, and switch.

We long for the all-too-rare sighting of something made for older girls that might not exclude Charlie.

Something musical, she loves music.

No small fiddly buttons, though – big ones are needed.

But the colours need not come straight from the Play School set – pinks and purples would please our little Princess, but anything would do.

We got the message that she’s keen for some older playthings over the weekend. Daddy lifted the bonnet on his car to change a headlamp, and Charlie and I were standing nearby.

She was immediately drawn to the engine bay, so we approached. When we got close enough, she reached out and pulled her weight right off of my legs (very rare) and started to touch everything within reach.

She explored caps and leads and hoses for a good ten minutes with a huge grin on her face until her little legs started to shake and I had to take her down from there.

How wonderful it was to see her so interested and really pushing herself physically to be able to have a better look!

How amazing to see the elation on her face as she felt her way around, patting and prodding plastic, rubber, and metal.

What a lovely experience for her big sister, who was excited to stand beside her and join the game. And what a great reminder for us that she’s ready for some toys that are aimed at children, not toddlers.

The only trouble is… where are they all?

Is it really necessary that we go looking for disability-specific companies and pay three times the price of anything in our local toy shop?

I’d love to hear some of the creative solutions other families employ when buying or modifying toys and games.

With Christmas coming, the inevitable question from family and friends is on its way: ‘What can we buy Charlie for Christmas?’

This year, I’d love to have some answers.

We’ve never heard a word from her lips – everything Charlie tells us, she tells us with her eyes.

Another common ground with Rett sufferers is large, soulful eyes, and the eyes seem to be one of the very few areas of the body under the control of the Rett brain.

Over the last six months, we’ve been madly fundraising toward the purchase of an eye gaze device, a computer with a special camera that tracks and interprets Charlie’s eye movements.

With this device, she can play games, read books, watch videos, surf the internet (when she’s older of course) – but most importantly, she can communicate with us.

If you’re thinking of the ubiquitous sight and sound of Professor Stephen Hawking speaking, you wouldn’t be far wrong.

In the past few weeks, we have finally loaded all the required software onto the new device.

Charlie has been playing games and quickly mastered the basic moves – much faster than anyone else in the family could when we had a go!

And she loves being in charge and independently choosing. Controlling her world for a change.

Games are one thing, but the communication software is large and complex.

We are at a bit of a loss as to where to start in supporting her, and although we’re working closely with our excellent speech therapy team, they’re almost as new to this technology as we are.

Charlie’s had a few good looks at the communication pages, but is much happier on the games for now.

Last week, after a long session of gaming, we sat at the kitchen table together.

Charlie was eating a biscuit and I was checking some emails beside her.

I put the communication software on screen for her to look at while she ate, not really expecting anything.

A few minutes passed and I felt a tap on my wrist. I looked up from my laptop to see her face! (Which made me laugh!)

Once she had my attention, Charlie started looking meaningfully from me to her screen and back. 

When I followed her gaze, I couldn’t believe what I was seeing.

It was her very first independent communication, especially for me. 

“I love you.”

Has there ever been a better sentence in all the world?

My pride knows no bounds.

I love you too, Charlie-bear. J

She smiled, clapped, made animal noises on demand, and loved to turn the pages of her favourite books.

She could nod and shake her head for yes and no, and she made everyone laugh by showing off her brand new baby teeth with a huge grin whenever we asked to see them.

Without warning, our baby disappeared into a world we couldn’t reach. No more smiling, no crying, no eye contact.

She stopped using her hands and her physical development stalled.

Since then, it’s been a long, hard road to recover some skills.

She can no longer turn pages with her one semi-functional hand. She doesn’t crawl or walk, and has no verbal communication skills.

Rett Syndrome sufferers are known as ‘silent angels’ because this is a fairly universal element of the disorder.

Despite all this, Charlie is a constant delight.

She is all wide-eyed love and innocence at five years old, and her smile and giggle is infectious.

She loves people, and especially enjoys one-on-one time with anyone. Music never fails to move her, making her laugh or dance, or just listen intently or go to sleep, depending on the song.

Charlie works so hard for the small gains we’ve made.

Her therapies are arduous, often painful and frustrating, but she rarely complains.

We concentrate on physical development and strength, functional capabilities (especially using her hands), and communication through eye gaze.

These three domains seem to each take a turn in the spotlight, although her therapies are mixed and very much cooperative.

This week, her physiotherapy is paying off.

She has been particularly strong in standing, spending time in her walker and even testing her limits with a few independent steps.

She is tolerating difficult positions for longer periods and her Daddy even remarked that she felt lighter to hold, as though she has been supporting herself a bit more when we lift and transfer her.

On the occupational therapy side, however, we seem to be backsliding.

Charlie is having trouble picking up her cup to drink, and drops things more than she should.

She struggles to pick up anything small between her fingers, and her hand wringing and hand-to-mouth behaviours have increased to a point where it affects her ability to finger-feed (the only significant self-care she is capable of).

This pattern is typical of Rett Syndrome, and of our experience with it in Charlie.

It’s hard not to jump on the emotional roller coaster…

The highs of a new skill followed by the crushing defeat of a declining one – but we try to keep some perspective.

Next week, we might find that her grasp improves but her scoliosis becomes more pronounced.

If we throw her communication development into the mix, it complicates things even further.

Last week, she ‘said’ her first words with her eye gaze machine and we rejoiced. This week, she has barely raised enough interest to play the games on her device.

If there’s one thing we’ve learned over the last few years, it’s that we can’t take anything for granted.

We make a conscious effort to celebrate the wins and let the losses flow off our backs.

It’s not an easy balance, but it’s the way we stay positive, and the greatest gift we can give to Charlie is our belief in her capabilities.

She can, and she will. And we’ll have a party when she does.

We’re lucky enough to have mountains, rainforest, beaches, caves, and urban treks right on our doorstep.

Before the little girls were born (they’re only eighteen months apart), we used to take bushwalks to waterfalls, or spend long energetic days at the beach.

These activities slowed a bit when the girls were little, but we always assumed that we’d be back to it once their little legs caught up.

Charlie’s Rett diagnosis brought with it a whole new set of expectations, but we’re determined that it won’t limit her – or us – wherever possible.

We often drive up to Mount Tamborine and wander along the Gallery Walk.

Sampling fudge and sipping coffees and hot chocolates in little cafes during winter, and licking ice cream and enjoying the lower temperatures of the rainforest during the long, hot summer.

The brilliant Upsee has helped us to include Charlie in these adventures.

Even with its help the longer walks to the falls have been beyond her reach.

Last week, we bought a second-hand hiking pack.

The family we bought it from assured us that they had traversed the Japanese mountains with their six-year-old daughter on their backs (obviously far more serious about their hiking than us).

Charlie is not yet five, and a good eight kilos lighter than their daughter had been at the time, so how hard could it be?

We paid their very reasonable asking price, got a quick lesson is how to fasten all the buckles and straps, and off we went.

The following day, we drove to Tamborine.  The whole family was in attendance, and Curtis Falls our destination.

Curtis Falls is a short two-kilometre round trip from the road – perfect for our first time out – and the rambler is rewarded by lush rainforest and an eventual endpoint of a clean,

clear pool fed by a fresh and beautiful waterfall.

It was a mild summer’s day with a light drizzle in the air, and we covered ourselves in insect repellent (along with sunscreen, this is the ubiquitous scent of Australia), strapped Charlie in and set off.

Success!

Charlie was incredibly happy, chatting and squealing and giggling her way through the forest.

We took about a thousand photos to mark the occasion, and will definitely be out there again soon.

It’s so important to us that Charlie is able to see and experience as much of what the world has to offer as humanly (and financially) possible.

I suspect we have a window of perhaps two years before we can’t carry her on our backs any longer, so we’d better make the most of it now!

There’s no doubt that the lives we special needs families live don’t fit into anyone’s frame of, ‘normality’ – except ours, of course.

If you’re lucky enough to have friends with high needs children themselves, there’s a level of deeper understanding that’s like a breath of fresh air.

We recently went to the birthday party of one of Charlie’s little friends from her special preschool.

It was such a lovely experience.

All of Cam’s toys were appropriate for Charlie, I didn’t have to explain any of her behaviours, and his extended family were wonderful.

His Grandad came to offer Charlie some food, holding out his hand and waiting with a patience born of experience for her to tell her hand what to do.

It really was the most incredibly eye-opening thing for me.

Better yet, their family lives very near to us, so I’m hoping we’ll see more of them over the coming months.

In more general terms, though, I don’t have any, ‘special needs family’, friends.

I’ve been lucky enough not to lament this loss, since our circle of friends has been nothing short of amazing.

I find myself thinking a lot about this lately, because one family of our particularly close friends has just moved overseas and I know our lives will be very different as a result.

Our youngest children are the same age and have grown up together, so there’s never been anything less than total love and acceptance for Charlie and her needs.

There’s never been any pointing or staring to deal with; they just ask questions immediately as they think of them.

Extended ‘family’ gatherings at parks or swimming pools together have always given us a protective bubble of normality despite our obvious differences from the crowd.

So here they are, three cheers for these brilliant friends who are more like family:

Hip hip, hooray!

I love the fact that we can sit in a room together, chatting and laughing, while I’m performing some ‘special needs’ task that other people might run screaming from.

Better yet, these friends are the kind who would happily roll up their sleeves and do it for us, never missing a conversational beat.

Hip hip, hooray!

They’ve been the friends we can really tell the truth to, ones who love Charlie almost as much as we do and, because of that, they’ve cried with us as well as laughing at – or making! – the most inappropriate jokes without offence.

Hip hip, hooray!

Thanks for all the no-effort babysitting – we’ve been able to drop kids at their house with only the clothes on their backs and they’re fully prepared and ready for anything.

They understand Charlie’s needs and signals better than anyone outside the immediate family and they don’t mind when she makes an enormous mess.

Bon voyage, Tempelmans!  We’ll miss you!

It’s probably long overdue, but there have been a few things lately that have really illustrated to me just how much they deserve it.

Charlie has three incredible siblings.

Emily is sixteen, Dylan is eleven and Susannah is only eighteen months older than Charlie, and has just turned six.

Some days, the wide age/ability gaps make life really tricky.

For example, there doesn’t seem to be a single family outing that pleases everyone.

On the plus side, Charlie has the benefit of being surrounded by all ages and experiences every one of them in different ways.

Emily takes on a maternal role, Dylan is the consummate protective (and annoying) big brother, and Susannah is her best friend and is always telling me how well she understands what Charlie wants.

Here are just a few examples of their incredible support:

This morning, Charlie had what we affectionately refer to as a, ‘poonami’ – (rhymes with tsunami).

This is one step up from a, ‘poosplosion’, and a horrible wake up call.

The trouble was, I needed to get on the road so Dylan would make it to his cello lesson on time.

Emily was halfway through doing her hair and makeup for a dance performance this morning, and still she offered to take Charlie into the shower and clean her up while I did the mad dash to school.

Yesterday, I was leaving the shops with the three younger children and went to return the trolley in the underground car park.

When I got back, Dylan had managed to get Charlie out of her chair and into her car seat as well as folding and stowing the chair in the boot.

Both Charlie and her chair are very heavy, and we have a van so there’s a bit lifting involved!

When I thanked him and let him know I was very impressed, he said, “Mum, even though Charlie’s getting bigger, I think I’m getting stronger at the same time so it’s perfect!”

Over the weekend, Susannah came into our room early in the morning to tell us that Charlie was awake (they share a room).

She followed this up with, “…But you can stay in bed for a bit because I’m going to read her some books.”

Then she climbed into bed beside Charlie and we heard her read Fox in Socks, The Elves and the Shoemaker, and Sleeping Beauty whilst Charlie giggled away.

It was really something beautiful to wake up to.

Special needs siblings have a harder time than most.

Their needs often come in second to the more pressing needs of their special brothers and sisters, and that can be tough for a young mind to wrap around.

They also feel the loss of the sister they’d hoped to have, just as we grieve for the child Charlie cannot be.

Despite this, my children love Charlie fiercely, and they celebrate her achievements with us every day.

They provide so much support for us, for each other and for Charlie.

They have to put up with parents who are often highly strung and stressed to the point of irritability (okay, that’s mostly me).

They drive us nuts, too – they bicker constantly, they’re demanding and self centred and all the things that normal children are… but they’re also something else.

They’re patient, kind, loving, strong, tolerant, helpful… I could go on, but for now I’ll just say thanks.

Thank you Emily, thank you Dylan, and thank you Susannah.

I don’t know how we’d do it without you.

Charlie had a brilliant therapy session last week.

So good, in fact, that I just had to give Michael a call at work to tell him all about it.

After missing him twice, we finally managed to make contact and I excitedly told him all about her amazing progress that morning.

When I’d finished, I expected him to be as cheery as me, but he just quietly said, “That’s awesome darling, give her a big kiss from Daddy. I have to go grab some lunch, talk to you later.”

A few minutes later (and a bit miffed), I sent him a quick ‘Are you ok?’ and got this text message:

“I’m just trying not to cry actually… it was amazing to hear about Charlie doing so much today… and heartwrenching that I wasn’t there.”

I realised then that it was perhaps a bit insensitive of me to call him at work to brag about another ‘first’ he’d just missed.

But this is the tightrope we walk.

Michael wants to hear all about Charlie’s therapy sessions, but he’s rarely able to take her.

He loves to talk about all the things she’s working on at home or with Nanna or at kindy.

We talk about all the children and their achievements all the time, but Charlie’s ‘big’ moments can be pretty few and far between, so they’re always a big deal.

Also, the bigger kids have news to share that comes from school, from friends’ houses, from band rehearsals or dance classes – these moments are theirs alone, because neither of us were there to see them first-hand.

Charlie spends little time away from me, so I’m almost always there when her ‘moments’ come.

I always worked full time before Charlie, and I do remember feeling some of what he’s going through.

Some days, it really sucked.

To Michael – and all the other Daddies (or Mummies!) in similar positions – I just want to say:

Thank you… for working hard and long hours so that our children can have one parent available to them most of the time.

Thank you… for never moaning if the dinner isn’t ready when you get home from work.

Thank you… for offering to cook it yourself sometimes.

Thank you… for saving your days off for specialist appointments, sports days, therapy sessions, parent/teacher interviews, and school performances.

Thank you… for doing the dishes on the weekends when you’d rather be snoozing on the couch.

Thank you… for taking freelance jobs where you can so that we can afford occasional treats (or just pay bills!).

Thank you… for staying in with the kids so that I can go to Happy Bowl and karaoke or just to the pub for a wine (or three) when I need a break.

Thank you… for arranging ‘surprise nights out’ for me – with you or with my girlfriends – when I’m too exhausted to think of it myself.

Thank you… for supporting my need to talk about my struggle with the transition from primary breadwinner to primary caretaker (on almost every date), and

Thank you… for filling the former role so seamlessly and without complaint.

Thank you… for patiently helping with homework and housework and cello practice.

Thank you… for being a supportive husband in every aspect of the word.

Thank you… for letting me vent about how difficult things are and how I feel like I’m going under sometimes.

Thank you… for celebrating the good times with us.

Thank you… for being a great Dad, and for spending one-on-one time with each of the children where you can.

Thank you… for everything it seems like I don’t notice – I do.

We’re tired (all the time), we’re busy (all the time), we’re worried (all the time).

We want to be good friends to you too, and we’re very aware that the friendship dynamic has changed as much from our end as from yours.

We forget birthdays, we turn down invitations and we hardly ever call you back when we say we will.

On behalf of special needs parents everywhere, I feel I can say that we still love you and want you in our lives.

To that end, I’ve put together a few tips from my own experience that might help us to maintain these very important relationships as we all negotiate this new landscape.

1. Ask Specific Questions

We understand that you don’t always know what to say – and neither do we.

Sometimes, we desperately want to talk about our children.

We’ll give you details you never asked for, and find it hard to shut up.

We know this can be annoying, but sometimes it’s about overcompensating for the fact that we might not have any ‘big’ news to share (no first steps or first words etc).

At other times, and for the same reasons, the general “How’s Charlie?” question garners nothing but a one-syllable reply:

“Good”.

It’s easier for both of us if you ask something a bit more specific: “How did Charlie like the zoo?” or “Is Charlie enjoying her new school?”

Don’t be afraid to ask the kinds of questions that you would ask about any ‘normal’ child, eg. “How does Charlie like having Mummy all to herself now that Susannah has started prep?”, or “What would Charlie like for her birthday?”

You may think these are hard ones because you and I both know that she lacks communication skills, but you can bet that I’ll have an answer for you anyway.

2. Don’t Feel Guilty About Sharing Your Child’s Milestones With Us

This is a tricky one.

It’s one of those times it’s almost unavoidable that we will feel a pang of pain and you know it.

We know that you know it.

Please understand that we can’t help it – and that we still want to hear your happy news.

This is especially true when we know your children well. We want to celebrate with you! There are a couple of things you can do to make this smoother, though.

Try not to offer your news apologetically.

We can feel that, and it feels patronising and horrible.

Also, don’t feel obliged to ask about our children in the same breath. “Little Johnny took his first steps today, and he’s only ten months old! (insert sympathetic look here) How’s Charlie doing? Any changes?”

This is awful, and puts us on the back foot straight away.

You wouldn’t do it if my child was a ‘normal’ non-walking ten-month-old, so don’t do it just because my child is four and should be walking.

This seems like a no-brainer, but it happens a lot.

Well-meaning friends and relatives make plans to do something that might seem difficult for Charlie, so we don’t get invited – or worse, we get the call that says “We didn’t invite you because…”

The truth is, there are many things that are tough for us and for Charlie.

You’d be surprised to learn what we can and do work around.

There will certainly be things we’d rather not attempt, but please let us make that decision, especially if it’s a family-type outing that we would otherwise have.

3. Talk To Our Children

I can just about remember a time – pre-children – when I had not the faintest idea how to talk to a child.

I was never sure at what level you should speak to them – was asking a three- year-old about school too hard? Too easy? Would it be uncool to ruffle a ten-year-old boy’s hair? What’s taboo with teenagers?

I can remember feeling awkward and strange when I saw friends with children.

I didn’t want to ignore them, but what if I said something wildly inappropriate?

I’m guessing that’s how a lot of people feel about talking to Charlie.

There’s the added possibility of looking a bit silly because she won’t answer you – and perhaps won’t even look you in the eye.

It really means something to us as parents, though, to see you make the effort.

A simple “Hello Charlie, you look cute in your pink hat” or “Lucky you, Charlie – I love chocolate too” is enough.

4. Talk About Other Things Too

Charlie is but one aspect of our very full lives.

Don’t feel like you can’t talk to us about other things going on in both our lives – sometimes we may even appear excited to talk about your tax return! (Well, appear…)

Seriously though, we do watch movies, and we do have jobs and we do have other children, and we still enjoy talking about all of them – yours and ours.

We can even have whole conversations sometimes that don’t have Charlie in them!

Our local shopping centre has a ‘North Pole Cottage’ set up – quite a sight in the sweltering Australian sun – where children and their parents wait in line for a thirty-second chance to tell Santa what they’d like for Christmas, say “Cheese!”, take a candy cane from the bowl and a glossy photo card from the printer, and be on their merry way.

Can you see this working for you?

Neither could I.

I don’t like to trade on Charlie’s disability for special treatment.

In fact, we’ve only just started using our parking pass because until recently, I didn’t feel that we needed it enough.

We’re lucky that Charlie is still little – we don’t need to negotiate Santa’s grotto with her wheelchair yet – but by the time we got to the front of that line, she would have been beside herself with frustration because she has no idea what we’re waiting for, overwhelmed by the excited crowd, and my arms would have been completely dead from holding her.

I had heard of a shopping centre that dedicated some time specifically to children with special needs, but it was nowhere near home.

So, I decided to ring the shopping centre and ask what arrangement they might have made for the same.

To my surprise, they had nothing in place for this.

However, they were very kind and understanding and offered to make Santa available to us prior to the official opening time.

In this way, we managed to avoid the crowd and take a few extra moments to get Charlie settled and facing the camera etc.

We weren’t able to get a smile, but she wasn’t crying and she was looking in the right direction.

Here’s the result – aren’t they lovely?

​(I may be slightly biased).

This has taught me that sometimes all I need to do is ask.

Charlie doesn’t have to miss out on these traditions just because we need to approach them differently.

Ask, and ye shall receive.

Seems appropriate at this time of year, eh?