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Harry says… (no)

One of the first words that children learn is no.

Are you going to eat your peas?

No.

Can you put a jumper on please?

No.

Stop putting your finger in yours brother’s nose.

No.

Harry has had a very clear and very enthusiastic “yes” for quite some time. He can say it with sign and with his voice. In fact he verbally has both a “yeah” and an “oh yeah”, each used rather specifically, see below…

Harry, are you coming for breakfast?

Yeah.

Harry, shall we go and play basketball?

Oh yeah!

But we’ve struggled with no. Physically, shaking his head is much harder than a quick nod, so all in all, a clear no has been tricky and not something that we were too concerned about.

After Harry’s first triumph of saying 2 words in a row, the very important “oh yeah”, I realised that it was definitely time to learn a clear “no”. I am not raising yes children, I want them to stand up for themselves and know when no is the right answer.

With guidance from his speechie we practiced and practiced and over the course of a few months Harry developed a wonderful sign, head gesture and verbal “no”.

What an absolute revelation it’s been! My previously, wonderfully agreeable son started making up for lost time with a barrage of even more wonderful “no’s”.

Harry, are you coming for breakfast?

No.

Harry, come inside.

No.

Harry, do you want to play basketball?

Oh yeah! (Basketball will forever trump all)

And a good, solid and undeniable “no” is never more important than when your parent forgets what being a school kid was like and attempts to make decisions on your behalf that could hold catastrophic loss of points in the school playground fashion arena.

We arrived at school on Friday and I’d forgotten it was casual day. I jumped out the car, opened Harry’s door and apologised.

M📢: Sorry Harry, I totally forgot it was casual day. It’s no big deal though, you don’t mind being in your school uniform.

H☝️: no home

M📢: You want to go home? Seriously? Come on, it’s fine, let’s just get out the car. No one cares, there are other kids in their uniform.

H☝️📢: no (said with sign, gesture and his voice – the trifecta of “no”)

H☝️: home

M📢: You want to go home and change?

H📢: Oh yeah!

So, we turned around, went home, Harry selected a rather snazzy little outfit and we were back at school in time for the bell. And my once again agreeable Harry was only too happy to get out the car and head into class after knowing when to say “no”.

A soundtrack to love, grief and happiness

A soundtrack to love, grief and happiness

I glance out the window of my office as I’ve been doing with increased frequency for the past 30 minutes. Tired from a busy week, but flushed with anticipation, my heart races. The evening sun shines bright with the glowing haze of a long Australian heatwave.

Finally I see his van pull up, that I know is filled with wakeboards, eskies of cold beer and him, my new love. Laptop slammed shut, I step up into the van and look across at him, tanned, shining from the heat, he smiles, leans across and kisses me. The van roars forward, the music clicks on and our soundtrack begins…

“Happiness, hit her like a train on a track
Coming towards her, stuck still no turning back”

Profile of a man and woman embracing

I stare down at my beautiful boy, our perfect first born. He’s still, eyes closed, the beeping and rhythmic breathing of the ventilator the only signs of life. Heavy with grief, immersed in fear, I sit beside him. Desperate to gather him to me and nuzzle into the warm chubbiness at the back of his neck, but too afraid to even hold his hand.

The hospital sounds merge into an endless drone. I cannot feel, I cannot move, I cannot think. So I sit and I pray to a God I don’t believe in with a prayer that cannot be answered.

“And the arms of the ocean are carrying me
And all this devotion was rushing over me
And the questions I have for a sinner like me
But the arms of the ocean deliver me”

Woman leaning over a baby in a hospital bed, his head is bandaged.

When I can no longer sit I run. I run and I run. I run crazed. I run until I can barely breathe, pushing past burning pain, beyond my physical capacity. The pounding on pavement unheard as the music plugged into my ears drowns out all sound. Drowns out my screams.

I run and I run around the hospital. Up the hill, across, back down. Never more than a 2 minute sprint back to his bedside. The sharp gasping in my lungs and the hot burning of my legs are relief from the still, silent depths of the daily unknown.

“‘Cause I am done with my graceless heart
So tonight I’m gonna cut it out and then restart
‘Cause I like to keep my issues strong
It’s always darkest before the dawn”

We stand at the entrance to the hospital, a brief hesitation before we enter. We grasp hands tightly, sharing the love, strength and joy from our friends and family that has just surrounded us and lifted us up . My wedding dress billows behind me as we race towards his room, hearts pounding, anxious to hold our boy.

There was no feasting and no dancing, but there was quiet celebration and an eternal commitment to love and protect. As we hold our boy, we show him our rings. As we have promised each other, we promise him. Love, care, protection and happiness. Always.

I look across at my husband and a dream of a never danced first dance fills my head, my heart and my ears. Perhaps one day we will laugh and dance again. Perhaps happiness will find us and stay with us again.

“Sometimes it seems the going is just too rough
And things go wrong no matter what I do
Now and then it seems that life is just too much
But you’ve got the love I need
To see me through”

Image shows a man and woman in wedding dress looking at their son

It’s the morning of my birthday. A moment of quiet in bed and then I hear them, excitedly running and shuffling up the passage. Any brief solitude forgotten as my bed is filled with my happy, giggling children. We rip open presents and I praise hand drawn cards.

Harry cuddles into me and Jamie hands me a final envelope – tickets to a concert, to the soundtrack that was forever playing in the background of our love and then our grief and finally our happiness.

Yes, we will dance again!

“And it’s hard to dance with a devil on your back
So shake him off, oh whoa
Shake it out, shake it out,
Shake it out, shake it out, ooh whoa”

img_2534-1

All lyrics from songs performed by Florence and the Machine

Dog Days are Over
Songwriters: Florence Leontine Mary Welch / Isabella Janet Florentina Summers;
Lyrics © Universal Music Publishing Group

Never Let Me Go
Songwriters: Paul Epworth / Tom Harpoon / Florence Welch
Lyrics © Sony/ATV Music Publishing LLC, Universal Music Publishing Group

Shake it Out
Songwriters: Paul Epworth / Tom Hull / Florence Welch
Lyrics © Sony/ATV Music Publishing LLC, Universal Music Publishing Group

You’ve Got The Love
Songwriters: Arnecia Michelle Harris / Anthony B Stephens
Lyrics © Warner/Chappell Music, Inc

Everybody’s rolling, rolling, rolling…

Everybody’s rolling, rolling, rolling…

Harry is having some pre dinner quiet time on the couch with his iPad, watching Playschool. I know that some 7 year olds perhaps don’t watch Playschool anymore, but I love it and so does he, so I’m more than happy for him to watch it for as many years as he wishes. But, I digress…

As he’s watching I hear them talking about the Newam family who have moved into a new house when in “rolls” their son Lee and, in true Playschool style they start singing…

“Everybody’s rolling, rolling, rolling, everybody’s rolling just like Lee” (I know all the Aussies we’re singing along with me 😂)

I peer over Harry’s shoulder, he pulls the iPad closer and we see a little “Lee” toy in his wheelchair rolling across the screen. Next comes his sister; “everybody’s jumping, jumping, jumping…” You get the idea. (It’s the ‘Track and Trails: 1’ episode available here)

Image shows a screenshot of an adult’s hands pushing a small toy of a boy in a wheelchair along a cardboard path

Just like our Harry rolling and his little sister jumping. No biggie. No need for Playschool to make a big song and dance about it, which they didn’t. Well, I suppose technically they did, but you know what I mean! They’re just representing the diversity of families and children. And gosh, how wonderful for images like that to be part of Harry’s childhood, and Tallulah’s, and Audrey’s and all children for that matter.

Dylan Alcott, an adult who uses a wheelchair, a previous Triple J presenter, host of The Set on ABCTV and a tennis champion, wrote on his Instagram page about his newly released book, Able: “growing up, I never knew anyone with a disability, and when I turned on the TV or flicked through the newspaper, I never saw anyone like me. It made it really tough, and is something that I have always wanted to change.”

This is not the first time that ABC Kids has had kids with disabilities in their programming. Who could forget the wonderful Cormack shooting hoops with Humpty, that I wrote about here. And even our buddy, Cal, another AAC user featured in this “through the windows” section on Playschool. There’s Jack’s Wheelchair song by The Wiggles and likely a few more that I’m forgetting. And whilst this is all wonderful, it is still a mere speck of representation in a mainstream universe of TV, books, songs, movies, newspapers and more.

I don’t think we realise just how important representation is until we finally see it. A wonderful organisation, Starting with Julius, work with companies to promote the inclusion of people with disabilities in mainstream media. And for that I am extremely grateful – to see a kid in orthotics in a Target catalogue or a boy in a wheelchair in a Kmart commercial is essential to, in the words of SWJ, “stimulate cultural transformation for a world in which people with disability are recognised, respected and valued as equal citizens and unique individuals.”

For Harry, to see and know that there are lots of kids and adults out there just like him doing all sorts of wonderful and also very ordinary every day things is essential to show him that he very much belongs and is of value to our great world. Not just the special one reserved for special kids, but the every day, mainstream, for-everyone world.

And for me, to have a family like ours represented as just another family also reminds me that even though we may, at times, feel isolated and on a journey that’s not always easily understood, we too are just another ordinary Australian family rolling (and jumping) along.

EDITED TO ADD: I wrote this blog last night but didn’t get round to posting it. Tonight I gave Harry his iPad to play on while I cooked, and in between roasting the butternut and fluffing the couscous, I heard again “everybody’s rolling, rolling…” – now doesn’t that speak volumes!

Image shows a view from above of Harry sitting back on the couch watching his iPad displaying a still from Playschool

“Why doesn’t Harry talk?”

“Why doesn’t Harry talk?”

T: Why doesn’t Harry talk

M: He does talk with his talker

T: No, why doesn’t he talk like us with his voice

Okay. Deep breath. Here we go…

I’d been wondering when we might start getting more complex questions from Tallulah about her brother. Up until now, it doesn’t feel like there’s been much need to delve too deep. There have been a few comments from her, but all fairly fleeting. Harry and his way of moving, talking and being in the world is simply part of our family’s tapestry.

Since the day she was born, Tallulah has been surrounded by children with all kinds of different abilities. She’s come to therapy to expos, to kindy and school and I’ve always hoped that this big, inclusive world that we’re trying to raise her in will instill a sense of openness and kindness to all.

As wonderful as this varied and inclusive environment that we’re striving for is, I’m also aware that having a brother with a disability is going to have its challenges…

I can’t control the stares and comments from strangers.

I can’t control the words and actions of any future mean girls or boys.

I can’t control any feelings of grief, unfairness, responsibility or fear that she may experience as she grows.

But oh, how I wish I could.

All I can do, is educate and empower myself to support her and Audrey in their growth as individuals and as sisters to each other and to Harry.

So off I went to a Siblings Australia workshop run by Kate Strohm. And clearly, by the question at the start of this post, in the nick of time!

Sitting with a group of parents listening to Kate share her own experience of growing up with a sister with a disability and her knowledge from decades of experience as a counsellor and founder of Siblings Australia was not only incredibly informative, but also very important.

We invest so much time, energy and money into ensuring that our children with disabilities are supported, but what about their brothers and sisters? These wonderful children who often end up, as adults, in professions helping people and also as the primary supporter of their brother or sister after their parents are gone. But these kids can so easily be overlooked, not from negligence, but from the sheer magnitude of time that it takes every day to support their brother or sister.

I have been very lucky to receive incredible advice from therapists, doctors, nurses and other parents about how best to support Harry to reach his full potential physically, emotionally and intellectually. But advice on how to support his sisters’ emotional well-being ? Well, um… none.

And that’s why those 2 hours were so important for my learning and confidence as mum to Tallulah and Audrey. Let’s be honest, we’re all pretty much winging it through this parent malarkey at the best of times, but now I have a ream of notes on my phone filled with ideas for the emotional well-being of Tallulah and Audrey. Look, I’m hardly going to get this right all of the time or possibly even most of the time, but I’m armed with knowledge and that’s a pretty good start.

So back to Tallulah’s question about Harry’s voice. I was ready, I was drawing on the knowledge contained within that gold mine of notes on my phone…

M: No, he doesn’t talk with his voice like we do, his muscles work differently to ours…

…and as I was about to pull out some parent-who’s-been-to-a-workshop-and-is-feeling-like-an-expert gold, I get this from her…

T: Look mum, this bunny is a bag!!! (giggles and wanders off)

Well okay then.

So we may still be at the funny bunny bag stage, but this mum is ready to whip out some Jung-esque* brilliance when the time comes!

*Not quite, but I’ll do my best to remember and support her and her sister with the wonderful array of strategies I learned. Knowledge is power.

Picture shows a girl standing on a large round swing and a boy sitting in the middle looking away.

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Harry says… (Chinese New Year)

It’s Chinese New Year today and H’s school had a super fun (and super loud) parade this morning to celebrate!

We’re on our way to school, H is wearing his touch of red and a delightfully noisy tambourine is packed for the celebration. As per usual, H has selected his tune of the day to accompany our journey to school – this morning’s school run was brought to you by Uptown Funk by Bruno Mars.

I remind him that it’s his Chinese New Year Parade and that T and I will be there to join in the fun. Realising that it’s not a word that he hears often I say Chinese New Year in PODD speak, meaning that I include the PODD pathway to the word.

M📢: Today is school special events Chinese New Year

Briefly after, H grabs my attention to turn down Bruno so that he can say something…

H📱: Chinese New Year it’s time

After almost 5 years of having PODD in our lives I’m now fluent in PODD and it’s so helpful to enhance H’s understanding and to ensure he has access to words when I can’t model to him, like when I’m driving, in the kitchen cooking, hanging up washing or any time really.

I highly recommend adding PODD to your verbal repertoire, although preferably only when your kids are there. I don’t think baristas are too keen on a “food and drink drinks coffee greetings and manners please” order!

Happy Chinese New Year!!!

To all the women…

To all the women…

Moving to a new country as an almost 30 year old woman, it was hard to feel connected to a big group of women. And then I become a mother and found myself part of a lovely mother’s group with women on a similar typical-baby-rearing path. But as briefly as I walked that path, it was gone. Some women never get to walk that path and others, like me, walk it for a time until a diagnosis, accident or other trauma hurls you off it. My new and fragile identity of ‘mother’ that was still being formed and had allowed me to connect to a group of women was suddenly, unexpectedly and permanently altered. Where do I belong now?

I have found myself grappling with my identity as a mother and a woman in varying degrees in the years since H’s accident. There are times when I feel powerful and assured of my place and my purpose and then there are moments when it feels like I am completely lost, alone amongst a world of connected women. There I stand, isolated. Perhaps on an island of my own making. An island that I’m afraid to leave but even more afraid to linger on.

And then I did 2 things.

Halfway through H’s first term of school last year, I was standing with a group of women chatting whilst we waited for the school bell to go. It was the same group that I’d found myself chatting to almost every morning and every afternoon, 5 days a week for the past 5 weeks. We laughed through shared experiences of toddler tantrums, commiserated over the daily work-life-laundry struggle and, as a bonus, our kids seemed to like each other too. And so I did what needed to be done, I delivered the one line proven to take any fledgling friendship to BFF status: “Shall we go out for drinks?” A few weeks and a few bottles of champagne later, a group of happy women walked home together with the only lonely victims of the night being a group of mum wagons dutifully abandoned in the pub car park.

But this mum, who lives across two worlds, realised that something else was needed. The women from my non-typical path. The women who can recite reams of medications and run you through a list of diagnoses that would make your eyes water. In the early days we met at therapy groups, workshops and regular early intervention appointments, but now, with kids at school and younger siblings demanding already non-existent time and attention, the closest we come to a catch up is liking a picture on Facebook. And so we decided to attempt a semi-regular evening catch up. The kind of catch up where anyone can cancel at a moment’s notice because we all get it. The kind of catch up where you can vent and moan and complain about a world that doesn’t always understand your child in a safe space. The kind of catch up where you can compare the various ways that the most distressing news has been delivered to you and have tears of laughter streaming down your face, because the years have passed and you now know that laughing is a much better strategy.

How lucky I am to have access to not one, but two groups of like-minded mothers. And so I look up and see that I am surrounded by women, phenomenal women…

To all the women who I have known my whole life. The women who have been there for first days at school, learning to read and learning who we are, together.

To all the women who were there for the carefree years, embracing a life free of responsibility and filled with dance-offs, breakups and discovery.

To all the women who I don’t see as much as I would like to, but there you are, steadfast, watching and caring for our family. Cheering us on through every little win.

To all the women who text, email, call and message without ever expecting a reply. And when my late and apologetic response eventually arrives, you’re gracious, kind and understanding.

To all the women who, in lieu of being able to provide your physical presence, have sent gift parcels filled with chocolates from home and girly treats or sent me off to be pampered. Your insight and care (and understanding of how I miss a bright, painted nail) humbles me.

To all the women who still invite me for drinks, coffee, play dates knowing that I may cancel at the last minute or possibly double-book you with one of another thousand appointments I’m trying to juggle, your kindness (and resilience) astounds me.

To all the women, thank you.

Thank you for surrounding me with your love, belief and encouragement. I sometimes hear you say things about the way that we have coped with all that we’ve been through amazes you, but this is not something we or I could have done alone. I’ve made it through because you were there.

And to all the women who may feel isolated, afraid to leave their island, I see you. Don’t be afraid to look up and reach out. Your women are there.

And remember there’s always the proven BFF-making line; “Shall we go out for drinks?”

To all the women
Photo by Evan Kirby on Unsplash
Stepping Back to Move Forward

Stepping Back to Move Forward

It was about a year ago that I wrote a blog entitled “The Communication Slow Patch”. If you haven’t read, I am sure you can guess the gist of it from the title. And since then it has all felt fairly static, communication-wise. It’s not that H hasn’t been using his talker, he has, but perhaps not making the language gains with it that we’d been hoping for or working on. That may sound harsh and I am absolutely a big believer in taking things at his pace, but nonetheless it’s hard, as a parent, to feel like you’re coasting on a communication plateau not knowing when, usually accompanied by a sigh of relief, the next gain will be made.

A couple of months ago, we had a speech session where I aired some of my concerns and asked for guidance. How can I better support H? Am I not doing enough? Am I doing the wrong thing? You know, the usual mum guilt scenario assuming that it’s something that I have or haven’t done…ugh.

She introduced me to the Red/Yellow/Green System developed by Karen Erickson. In a nutshell, Erickson explains the importance of pairing red tasks (cognitively and linguistically challenging or new) with a green communication system (a system that can be used easily with a great deal of success).

Thinking about Harry’s learning at school and the new language skills that we are teaching him, these would all fall into the red and occasionally yellow task category, but most of the time we are also pairing that with a red/yellow communication system. And with those 3 colours in my mind it became perfectly clear, we are simply asking too much of him. With all these new language and cognitive tasks, he needs his green communication system, an old reliable PODD that he can use easily without too much thinking. And do you know where his green communication system is… oh wait for it… it’s in a plastic bag covered in vomit. Oh yes, a PODD-destroying spew that no amount of disinfectant spraying and wiping and scouring could erase. But I’m a PODD fan girl so instead of throwing it out, I have hung on to said spew covered PODD.

But now that we had a clear plan, it was all systems go. I got the files for Vom PODD and Vom PODD 2.0 was created. You know what, let’s call it Green PODD, a totally fitting name seeing that it is in fact green! Green PODD is based on a PODD we had a few years ago so the complexity of language available on it isn’t the same as on his talker or more complex 90 location PODD book. To use an analogy I’ve used before on our Facebook page, Green PODD is like a comfy old pair of slippers that your gran bought you; not too flashy and not too fash-forward, but wow, they fit like a dream.

Green PODD arrived and we started chatting. Then we chatted some more. And we kept chatting. And chatting. And chatting. Harry was saying all sorts of wonderful things and, without flicking in and out of screens or taking his turn away from him, we were easily able to expand on what he was saying or model other options available. It may not have the language complexity that we sometimes need to model and that I know H is ready to learn (and probably already knows), but we have his talker and more complex PODD for that.

Green PODD has given us, and H, something wonderful back – the joy of easy communication. Without the big cognitive demands on H of a system that he’s still learning, he can navigate through this Green PODD without too much extra thought whilst being involved with challenging cognitive tasks and new learning. I’m imagining it like my Lovesick (very fluffy Netflix TV series) binge. Yes, I could watch a documentary, but the green task of Lovesick matches perfectly with eating ice-cream, paying the bills and having a chat with J.

And as the chatting continues with H and the positive feedback from school comes in, any concerns that I might have had about incorporating an older PODD book back into H’s communication toolkit disappear. Using this PODD is not a step back at all, it’s a green light allowing us all to move forward.