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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!!!

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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.

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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!

The Path to School

The Path to School

I can’t believe that we’re already 3 weeks into school, that’s a third of his first term of his first year at school completed already – amazing! The journey to school has been a long one for us, as for most parents of a child with a disability, because the path isn’t always as clear as it should be.

The week before H’s accident, 5 years ago last Friday, we put down a deposit on a house. It was our first house and J and I were over the moon. One of the reasons we also loved the house was because of the local primary school which we had heard so many wonderful things about. This was our house and that would be H’s school. Done.

Until it’s not done. Until you suddenly find yourself on the ‘special’ road assuming and sometimes being told that you should go to ‘special’ places. You know, special kindy then special school on the special bus etc etc. As a new parent, you have no idea what you’re doing really and particularly as a new parent who went to school a LONG time ago when there was certainly not even a whiff of inclusion at school. Our assumptions are based on our experiences and those experiences can tell you that the ‘special’ path is the only path available to your child.

But along the way some of us are lucky enough to meet people who question and challenge those assumptions – why should he go to special school? Is that really the best path for him? Who’s going to benefit from him going to special school? Not him. And not his peers. Isn’t it interesting that not a single research article exists showing that segregated education has better outcomes for children with or without disabilities. NOT ONE.

I first became aware of that very interesting and path-changing fact when I went to a seminar by Dr Bob Jackson. In his article, “Why should schools include children with a disability” he talks about the outcomes of an inclusive education for kids with and without disabilities, teachers and the whole school community. I highly recommend a quick read of it. It’s belief changing stuff.

And so here we are. 5 years later and back where we started. The house is now our home and the school that we thought was no longer for us is where we drop H off every week day morning. And over the past 3 weeks, here are a few things that have reassured me of our decision…

We were playing out the front when a young girl in H’s class and her dad walked across the road to say hi because they live in the house opposite ours.

I had my offer of creating a letter for the kids to explain all of H’s equipment politely turned down because the kids aren’t really fussed by any of it.

I did write a letter to the parents, however, and have felt only support. Some have approached me in person, some via Facebook and some through this blog. Not one has questioned H being at school with their kids.

I have felt included.

I didn’t realise that including H in his local school moves far beyond him being in a classroom with his peers. It has ensured that our family is part of this community too. This is our neighbourhood and ALL of our kids go to school together and bump into each other playing outside, at the shops or on the street. Just as they should.

It’s still early days and I’m certainly under no illusion that it’s all going to be smooth sailing. We’ve had a few hiccups (a toilet seat arrived two weeks late and was in fact a chair. Yes, just a chair. To sit in), I’ve been more tired these past few weeks than ever before (compounded by an excellent bout of croup for T), but H is happy and I feel certain that he is exactly where he needs to be.

The look of pride when he puts on his school uniform and the beams of happiness as he high fives his buddies on his way to the car at the end of the day are all I need to keep going. (Well, that and a steady stream of double shot lattes!)

We may only be a few steps in, but I feel they are the right steps on the right path…

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H and I taking our first steps into his new school on his first day.
Give Santa a Chance

Give Santa a Chance

This week we had our obligatory Santa visit and, probably like most visits to Santa where it’s all new and strange and exciting and overwhelming, it wasn’t totally what I expected.

And I say ‘obligatory’ like it’s no big deal, but really it is! Visiting Santa always felt a bit out of reach – the noise, the crowds – we put it off until we finally heard about Sensory Santa for the first time last year. Sensory Santa is an opportunity provided by shopping centres with a Santa set up, where they open the centre early when it’s still quiet and provide 10 minute allocated time slots for a child and their family to visit with Santa. This is a game changer for kids who, for various reasons, wouldn’t be able to handle the noise, stress and chaos that can come with visiting Santa during regular hours.

I booked us in for our visit and began the Santa chats with H so that I could pre-programme his talker to make it quick and easy for him to talk with Santa. Last year he asked for a basketball hoop and luckily Santa was listening, I wondered what it would be this year…

H📱: Mrs E (his school teacher for next year)

Right, so he pretty much he wants to go to school for Christmas! We chatted more, I modelled a bit and H agreed that a school uniform is what he wants (well, isn’t that convenient as I believe that Santa is all over that request).

I programmed his talker, we all hopped in the car and off we went to meet Santa…

It was magical – all shiny red presents and sparkling white Christmas trees. H’s face at seeing Santa was once again filled with wonder and excitement. He squealed with delight as he saw the big guy in red. He pointed to the presents, to the trees, to Santa. I modelled some words on his talker…

I then tried to prompt him to say the messages that we had prepared for Santa – he looked at his talker, then back to Santa and chose not to say anything with his talker.

Instead he chose to use his voice to express his excitement and pointed to all the fantastic Christmasy things to communicate his message.

We had our family photo, H’s face is the absolute portrait of a thrilled 5 year old boy, whilst T’s is that of a suspicious 2 year old. It’s a pretty amusing shot!

H chose not to use his talker once whilst we were there. In fact, T also barely managed to say a word to Santa even though there was plenty of prompting from us too.

But the interesting thing is that I felt much more aware of H not using his talker than of T not using her voice. As parents, I think we can put so much pressure on our expectations and hopes for how certain encounters might go for our children. It comes from a good place as we want the best for them, but the reality is that it’s not about us.

This was H’s visit to Santa, it wasn’t about whether I think he should use his talker (or not as the case may be). This is about a young boy having a chance. Our job is to give him that chance…

We will give him the chance to always have easy access to his talker – it’s his choice whether he chooses to use it or not at any given moment

We will keep modelling words and using his talker – it’s his choice to use those words when the time is right for him

We will give him the chance to use a wide range of communication tools – it’s his choice to use his voice, his talker or his signs and gestures

We gave him the chance to see Santa – and he absolutely LOVED it!

The Communication Slow Patch

The Communication Slow Patch

When your child uses a device you become hyper-aware of each tiny little gain, every new word selected, each time 2 or 3 words are used instead of 1. You’re such an integral part of their learning that, when the going is slow, you feel it every moment. We’re in a slow patch at the moment and it’s not easy.

Learning an AAC system is so completely different to learning and then using spoken language. Tallulah, H’s little sister, is surrounded by people who use her mode of communication ALL THE TIME. She  comes home from childcare saying words that I know I have never said to her and, because of my experience with H, I am so tuned in to all her little language gains. But they’re too fast, I simply can’t keep up. She seemed to jump from combining 2 words to coming home singing songs just about overnight. Well, not quite, but to the AAC mum, it may as well be!

I was chatting to an insightful friend about our communication slow patch and, as she said, all kids tend to do that – focus on a different area to develop from time to time. I realised that just before I had been talking about H’s wonderful physical progress at the moment. He can now walk just holding my hand. Yes, JUST HOLDING MY HAND!!!! It’s nothing short of astounding to me when I can still clearly picture him in the weeks and weeks post injury not even able to hold his head up. (But then logically it’s also not that astounding when I think about every hard fought for step that he has chosen to make.)

He wants to walk E.V.E.R.Y.W.H.E.R.E. And if you won’t hold his hand to help him get there, he will pull himself up on any reachable surface, from couches to beds to rocking chairs and once just using the little turny-knob-thingy (you know what I mean right?!) on a window! It’s wonderful and terrifying all at the same time as I’m constantly worrying about what ridiculously small and unstable thing I’m going to find him launching himself up using next.

Stepping back and looking at what’s happening for him, it’s quite clear that, right now, H wants to concentrate on walking and being physical and so that is where the majority of his focus is going. Not every communication slow patch is quite as clear as this one in terms of another skill acquiring his focus. Sometimes there appears to be no reason at all for a slow down, just a temporary change of course with no clear direction.

During these quieter moments it feels even more important for us to remember and celebrate each wonderful moment with his communication to keep the motivation going for him (and us!) and as a reminder to us to just keep chatting to him because it all counts. Before this blog, and even still now, when he says something funny or new or just a simply wonderful everyday something that I want to remember, I jot it down in my phone or take a picture. I love scrolling through these and knowing that whilst he may be slightly less chatty at the moment and not taking that next communication step as quickly as I’d like (and why on earth should my timeline be his timeline AND the next step that we’re encouraging is a pretty challenging one!), we’re still chatting.

He still has access to a large and robust vocabulary.

He still has access to his talker wherever he may be.

He is still surrounded by people who will happily to chat to him using his talker without demanding that he uses it back.

He still knows that what he has to say matters.

He still knows that he has a voice.

And so for now, we will harness his physical motivation and encourage him along, remembering that, with all of the above in mind, we’re doing the best we can for him. His voice and how he chooses to use it, will always be enough. And, when he’s ready for his next communication step, we will harness that motivation and cheer him on every word of the way!

 

A black and with image of T and H’s feet – the cutest little standing feet I’ve ever seen!

 

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Harry says… (scared mum)

Recently Harry had a fall in his walker that resulted in a precautionary visit to the emergency department. He’s absolutely fine, but there was a special moment that I want to remember. And another that I wanted to share as an important reminder for me about Harry’s first step in his evolving role in his medical care.

As Harry fell and we rushed to him I let out a terrified shriek, the shriek of a mother who has a complete paranoia of falls and whose hyper-vigilance finds it impossible to reconcile any kind of accident, no matter how small, in her care.

As far as I was aware, that was the extent of the fear that I allowed to show, one brief shriek. We decided to take H to hospital as a precaution and I snapped into Medical-Emergency-Mum mode. Like many mums of kids with complex medical histories, once you’re in MEM mode, you become very calm and focused with any remaining panic and fear squashed to the side. We know the drill, we’ve done it countless times – grab the already packed bag, change of clothes, his drink bottle, snacks, medication, iPad for entertainment, talker, charger, sort the dog, arrange care for T etc etc… Within minutes we were in the car, me driving and J in the back with H. And yes, of course I was driving, even H knows that his mum is a bit of a repressed rev head! As we start driving, H says..

H📱: scared

J&M📢: (I can’t remember  our exact words, but we both chose words of comfort for Harry, remembering all our previous lessons learned and shared in Epiphany at the Eye Clinic)

H📱: scared scared mum

Oh my heart. Looks like my caring, intuitive boy saw straight through my brave mask and knew exactly how scared his mum was.

Boardmaker symbols for 'scared' and 'mum'.
Boardmaker symbols for ‘scared’ and ‘mum’.

Later we were chatting to the ED doctor, doing our usual, “yes, he can understand everything you say”; “yes, he uses this talker to speak”.

Doctor📢: Harry, how are you feeling? Do you have a headache or any pain any where?

We navigated to the ‘health’ folder on H’s talker and he hovered his finger over the page, but didn’t say anything. The doctor went back to writing notes when a few moments later Harry said…

H📱: headache

And I saw it, the briefest flicker in the doctor’s eyes. The flicker that questioned any previous presumptions about this boy and his talker.The flicker that will hopefully ignite again next time he sees a child with a book or device.

He drew up some panadol for Harry and off he went, but the importance of that brief moment and it’s meaning for H and his future dealings with healthcare professionals remained. This was Harry’s first real self-diagnosis in a healthcare environment. There is no doubt that we have many many hospital visits ahead of us yet, most of them routine, but some unplanned and it’s vital that not only is H able to provide feedback on his symptoms, but that he is also empowered to direct his care.

H and I cuddling at hospital with his talker in our laps.
H and I cuddling at hospital with his talker in our laps.