“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.

Chat

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.

Chat

Harry says… (big)

It’s day 4 of the first week of school and we’re happily settling back into our routine after a loooong summer holiday. Harry has bought his first set of readers home today and is keen to read them.

I love readers and find them brilliant for repetitive modeling as the first sentence of each page is usually the same. Sometimes I model, sometimes we just read. Sometimes I point to each word, sometimes H points. We just enjoy the quiet time together, although there is usually a nosy little 3 year old butting in, but that’s all part of the fun!

Today’s first reader was called “I am Big”. I popped it on my lap and knowing that Harry can say “I” and “a” sounds I pointed slowly to the first two words in the title and paused to give him time to say each word.

When Harry points to a word and makes a sound, we always assume that he has said the correct word and congratulate him. Just because verbally it doesn’t sound like the actual word doesn’t mean that he doesn’t know that word. For all I know it may sound perfect in his head, it’s just his muscles that aren’t delivering the word verbally the way we would expect. (Least dangerous assumption and all that good stuff.)

But of course I’m just human, and I’m also his mum, so when he does say a word that sounds close to what’s written, it’s a pretty thrilling moment.

As we’re on a roll with H saying “I” and an “a” sound for “am”, I point to “big” and do a nice Hanen-esq pause. And without missing a beat…

H 📢 : bigag

M: Harry, did you just read big? (I ask excitedly)

H📢: yea (delivered completely nonplussed with a not-so-subtle undertone of “obviously mum”)

And there you have it, we can never assume to know what our kids do or don’t know. It’s so much harder for them to show us all the wonderful things that they’re learning so we have no choice but to keep teaching them and keep believing that they are learning. The alternative is simply not an option.

This time last year…

This time last year…

It’s the day before the start of school and I’m filled with excited anticipation and, to be perfectly honest, I’m also feeling a little relieved. This long summer holiday has been wonderful and filled with happy, sandy and sun-drenched memories, but it’s also been exhausting. Trying to juggle entertaining children, family, fun and work without any ongoing and structured support is hard. But all that is fading now, as my mind drifts towards my feelings around the start of H’s second year at his local primary school.

This year, I’ve met his Year 1 teacher and she’s fantastic. She knows Harry, she’s seen him in class last year – possibly on a good day and certainly on a bad day. She knows what it means to have H in her class and she’s ready.

This time last year, I was filled with anxiety. I had met his teacher, she seemed excellent, but I was still filled with dread. Would she really be happy to have him in her class? Would he even be able to sit still and listen for a second? Would she know how to include him and help him to learn things the way he needed to?

This year I’m excited to see all the lovely school mum (and dad) buddies I’ve made. Yes, we’ve caught up occasionally in the holidays, but I’ve missed our twice-daily chats squeezed in between settling school kids and ensuring library books weren’t left at home. Or sneaking in a coffee and a babycino after school drop off when we’re flying solo with our toddlers.

This time last year, I was petrified. How would they feel about H being in their child’s class; would they accept him, me, our family? Perhaps they all knew each other already from playgroups or kindergym or whatever activities their kids have been going to whilst I’ve been ferrying H between therapy appointments.

This year I’m eagerly awaiting to see who will be all the new and old friends filling up H’s talker and our ears as he chats about them after school. I can’t believe how many people were added to his device last year, some not even in his class or year. Kids that I have no idea who they are, but I know that they are important to Harry; they are his peers, his classmates and his friends.

This time last year I couldn’t sleep. Images of H sitting alone during breaks filled my waking nightmares. What on earth was I thinking? Not only would he be the only kid with a physical disability at his school, he would also be the only kid who uses a talker. In amongst all these differences, would there be any children who would see the similarities, see past the equipment to the funny, cheeky and friendly boy within?

Boy, am I glad it is no longer this time last year.

Last year, H’s teacher certainly was happy to have him in her class, he did sit still and she did know how to include and teach him to ensure that he learnt and thrived.

Last year, the other school parents not only accepted us, they embraced us and we never felt excluded.

Last year, H made friends, real friends. Friends he may well know his whole life. Friends who accept him just as he is.

Last year at school was wonderful but, make no mistake, it was also challenging, tiring and time-consuming. However, one year on and I know we made the right decision for him, for our family and for our community.

So, a word of comfort and solidarity to all the other parents out there who, today, are filled with anxiety, fear and perhaps even second guessing your decision to send your child with a disability to a mainstream school. Please remember, our kids are tougher, braver and brighter than we yet know. The world can be more welcoming than we sometimes allow ourselves to believe and children, unlike us, know how to see past the differences to the similarities inside. You’ve made the right decision, it may not always be the easy one, but it’s the right one.

And this time next year, you too will be remembering, this time last year.

Chat

Harry says… (what)

Using question words is not a forte of H’s. He tends to get his questions across using nouns and and a questioning expression. Totally fine and in classic H style, also quick and effective – his modus operandi when it comes to communication. But it’s still important that he learns question words and so we model them when we can. He hasn’t much taken to using them himself yet though, the H method is still his go-to.

A couple of weeks ago during a speech session whilst reading a hilariously silly book aimed at 6 year old boys, his speechie modeled “what” when H was laughing at a particularly silly moment. With the “what” accompanied by a vocal “whaaaaaat”! This made Harry crack up even more.

Yesterday we were playing basketball and I shot a shocker of a goal with the ball going right over the top of the hoop. Remembering our speech session, I quickly modeled “what” on H’s talker which he thought was hilarious.

Cut to later that arvo, we’re unsurprisingly deep into another basketball sesh, and H shot a goal even more atrocious than mine, with the ball ending up across the passage and in our bedroom. We both cracked up laughing and he immediately reached across to his talker…

📱: what?! (followed by H’s gorgeous cackling)

We both had a brilliant belly laugh and carried on playing ball.

And hey, who wants to learn boring old questions words when you can be cracking jokes and learning fun, entertaining question words!