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Harry says… (oh yeah)

It’s term 3 of school, we’ve all found our groove and things are cruising along pretty nicely. It’s a busy Tuesday at work and my phone beeps… it’s Harry’s SSO. She has sent me a very excited text saying Harry has said 2 words together.

A bit of background on Harry’s verbal speech. Harry has about 10 words that he can say verbally. Coordinating his muscles is really tough for him so they’re all single words and all require one mouth movement. They’re all pretty functional words too, smart kid, things like “up”, “help” and “ball” (essential in H’s basketball-centred world).

We’ve done PROMPT therapy (a tactile therapy where the speechie uses their hands to touch his mouth and jaw to prompt him about which muscles to use to form a word) in the past and we still praise and encourage him when he’s trying to say something verbally. He’ll sometimes even prompt himself but, to be honest, it’s not really something that we ‘work’ on. It’s not that we don’t want him to use his voice, but I can see how incredibly difficult it is for him and how hard he tries and so that’s enough. He has his talker, his PODD book, his signs and his verbal words in his conversation toolbox so he doesn’t need to rely on only one form of communication. If he isn’t able to get his meaning across with one method, he can try another. Frustration is never the goal.

Anyhoo, I arrive at school that arvo feeling rather intrigued about Harry’s 2 words. As the classroom doors open and I walk in, I am surrounded by a bunch of excited 6 year olds all talking at me; “Look what Harry can say”, “Harry can say oh yeah”, “say oh yeah Harry”.

Harry is beaming! He looks at his buddies and, as clear as day, he says “oh yeah”. “Say it again Harry” says a friend who then reaches out to touch Harry’s face in exactly the way a speechie would PROMPT a child to make an “o” sound. “Oh yeah” he says filled with pride. “I showed him how to say it”, says one of Harry’s best buddies. (I later find out that he’s been determined to teach Harry to say “oh yeah” and the two of them had been working on it for about 3 weeks.)

Look, let’s be honest, if Harry’s speechie or I were to really focus on getting him to say 2 words together, would those 2 words be ‘oh yeah”? Probably not, Actually, make that definitely not. They’re not the most functional of words really are they? Or are they? I don’t know, maybe “oh yeah” is all the rage with Aussie 6 year olds, what do I know?

And what if I had been working for weeks on getting Harry to say 2 words – would we have gotten there? Perhaps. Would the motivation for him have been as high as with his buddies? Almost certainly not.

As I’m surrounded by all his excited friends and a delighted Harry, I blink back a few happy tears. Harry said 2 words together and he learnt it without me, without my involvement in every little step of his therapy. In fact I had no idea at all that this was going on and it wasn’t “therapy”, it was fun and learning with his friends. What a wonderful step towards independence, what a wonderful glimpse of what could be….

OH YEAH!

HandH
A black and white cropped imaged of H and his buddy who helped him to say “oh yeah”. They’re wearing their matching dinosaur vests – the fashion staple of 6 year old boys.
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Harry spells… (walker)

Oh how I love to eat my own words… At the presentation I did at the 2017 AGOSCI conference, I talked about how the first time Harry combined 2 words in his PODD communication book, “drive” and “park”, we were SO completely beside ourselves that we drove immediately to the park despite the fact that it was 7am on a freezing cold Sunday in June. I followed this delightful memory up with explaining that we no longer jump to his every desire just because he’s used his book or device to communicate. It’s simply his voice and so, as I’ve also shared in ‘Yes, you can say no’, sometimes the answer is no.

Yes, the answer sometimes is still no, right up until he changes the goal posts…

Once again, our story begins on a cold, wet and wintery Sunday, this time in late May. I’ve set up a Super Awesome Fun Obstacle Course (read: desperately seeking ways to expend energy in our kids whilst being trapped indoors) and we’re at the basketball component so whilst Harry is in his element, he’s still full of beans and bouncing around.

I turn to Jamie and, in super-stealth-parent-mode, say; “It looks like he’s really keen for his W-A-L-K-E-R.”

Harry’s snaps his head around to look at me.

He squeals. I furrow my eyebrows. Hang on a second…

“Harry”, I say. “Do you know what I just spelt?”

He squeals and jumps excitedly on the spot.

J helps him down and H beelines for the laundry, grabs hold of his walker and looks up at me with those big, blue eyes that turn my heart into a puddle of smooshy love.

Oh my clever, clever boy.

And you know the rest… we rugged up, popped him in his walker and went straight outside to play with our chuffed little boy.

I guess spelling is the new combining! (And we’re definitely going to need an updated version of super-stealth-parent-mode… time for Spanish lessons perhaps?!)

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Harry says… (shop food)

With the number of food related ‘Harry says’ blog posts it really shouldn’t come as any surprise to me that he really is my child when it comes to meals. I am the type of person who will enthusiastically be discussing dinner plans whilst still making my way through my morning oats.

And a trip to the zoo with all the exciting sights, sounds and smells certainly didn’t shift Harry’s focus off where and when the next meal would be. It didn’t shift mine either mind you, I just manage to (occasionally) keep it under wraps.

Whilst discussing over dinner the night before what animals we were excited to see at the zoo, Harry told us he was excited about…

H: picnic area

The zoo does have a rather pretty picnic area, so I’m with him on that one.

Once we were at thew zoo and had ticked off the big guys – hippopotamus, giraffe and lion – H was quick to remind us…

H: shop food

Ha! This guy has a memory like an elephant!

I was also internally high-fiving about his nice little combination of the words ‘shop’ and ‘food’. H is excellent at getting his point across with only single words, so it’s always a great thrill to see him creating more specific messages.

Later, as a treat from granddad, T and H each got to choose a pressie from the zoo shop. T’s search was quickly over as she bolted toward the back of the shop with the words “PINK MONKEEEEEY” drawing my attention to a lurid, does-not-exist-in-nature pink sloth. Fabulous. It’s name is “Girl” FYI.

And H once again thrilled us with his wonderfully specific two-worded message…

H: buy hyena

…whilst grabbing an African Wild Dog.

And home we traipsed, our hearts filled with a day together, our tummies filled with snacks in the picnic area and our arms filled with exhausted children, a hot pink monkey and a fuzzy-eared hyena.

We’ll leave the animal-naming lessons to another day…

H and T Zoo

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Harry says… (Tallulah school)

As you might have gathered, H is pretty stoked about the whole school situation. He loves his uniform, his teacher, his class, going to school and even doing his homework (long may it last).With school being just around the corner from home it does also mean that we drive past it a lot, even when we’re not going to school which can lead to some problems…

Whilst figuring out the school and child care drop off scenario, we decided to try dropping T off at childcare first and then heading back to school with H as it would be more time efficient. However, in hindsight we didn’t take the time to explain to H what we were doing the first time we switched up the routine.

We jumped in the car and drove past H’s beloved school to take T to childcare. Let’s just say it it did NOT go down well. And fair enough, poor H was not part of our planning and all he saw was us zooming past his school and him still stuck in the wretched car.

Over the next couple of days we made sure that we chatted it through properly with him and explained that he would still be going to school after we dropped off T. This was all supported by lots of modelling on his talker to ensure he had a good understanding and could chat about it if he wished.

A few days later, same drop off scenario and no complaints from H. Phew, my explanations were obviously enough I thought, what a relief.

We arrived at school and I opened the door to get H out and there it was, the rather smart coping mechanism that had helped him get through it…

H📱: Tallulah school Tallulah school

He had utilised self-talk (AAC style) to keep himself calm and reassure himself of what was happening. We all use self-talk in lots of different ways don’t we? In front of the mirror before a presentation to calm ourselves, lying in bed to motivate ourselves to get out and get that gym gear on or, in the case of a 5 year old school-loving boy, in the back of the car to reassure himself of the morning’s routine.

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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.
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Harry says… (not fair)

Yesterday evening I posted on Facebook about programming some words in to Harry’s talker to allow him to have some good old fashioned sibling rivalry with his little sister. And the wonderful Facebook community shared some glorious phrases overheard from their youngsters. (I’ve popped a list of them all at the end of this blog post for all the AAC parents out there)

This morning, in between mouthfuls of weetbix and yoghurt, I showed H the new phrases in his talker. I selected ‘not fair’ and was about to chat about things that might be ‘not fair’ when I see H press the ‘descriptions’ folder, followed by the ‘weather’ folder to then say this…

H📱: not fair rain

Well, that was unexpected!* But what an absolutely perfect thing for a 5 year old boy to be whinging about with all this miserable rain keeping him from playing outside. And how absolutely perfect that he is able to whinge about that and anything (or anyone) else that bugs him.

*Yet another little reminder that I don’t know nor can I expect to know what Harry is thinking and wants to talk about at any time. And that’s why he has access to ALL the words and I’ll keep adding more.

For all the AAC parents, here is a list of the phrases that were shared on my Facebook post in case there is something here that is just what’s missing from your child’s device or your modelling repertoire!
not fair
give it back
my turn
not like that
that’s not right
I didn’t do that
you’re bossy
I’ll tell mum
she did it first
that’s mine
you’re messing it up
you’ve got more than me
you have to share
I’ll trade you
just you wait
she started it
I had it first
she took my…
all mine
you don’t love me anymore

Good luck! 🙂        

 

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Harry says… (go babycino coffee)

It’s Sunday morning which means one thing in our household – pyjamas, potentially all day, and chocolate smothered pancakes.

We’re happily eating pancakes quicker than Jamie can cook them when Harry says…

H📱: go babycino coffee

  

In addition to the Harryesque cuteness of his permanent desire for babycinos, there are a few things about those 3 words that have me a bit excited.

He didn’t just say babycino even though he knows that he can pretty much get his message across in one word. We’ve really been challenging him recently to move beyond this with a few tactics that I’ll share soon. And seeing him putting together longer sentences is so rewarding.

Even though his dad makes a mean (read: heavy handed on the chocolate sprinkles) babycino, Harry intentionally chose ‘go’, this boy wants a barista made babycino and probably a spot of socialising too.

And finally, he masterfully put a little sweetener in to ensure his parents were right on board with his request – ‘coffee’. If our kids know one thing, it’s that coffee-filled parents are happy-filled parents!