Chat

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

Chat

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.

Chat

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.
Chat

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! 🙂        

 

Chat

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!

Chat

Harry says…(Harry yells…)

We’re in the car heading to an early morning physio appointment. Harry and Tallulah are in the back both having a good ‘ol chat to themselves from what I can tell. No one seems keen to grab my attention, so I turn up the volume on the radio and have a little sing-a-long. In case you haven’t gathered yet, I’m quite partial to a spot of car karaoke – check out our Facebook post from 27 May.

Just then, I hear this blaring from Harry’s talker…

H📱 (shouting): It’s time to play

It looks like someone has found the ‘yell’ button. We all absolutely crack up laughing and Harry follows with this…

H📱: I love you

There’s nothing quite like a shared joke (and some shouting and singing) to get the happiness going on a winter’s day.

UPDATE: Harry is now at expert level of switching his talker to yell volume, however, we’re still working on him getting it back to talk volume. I spend quite a bit of time now saying this…

M📢: I can hear you Harry, no need to yell. Go to edit and controls and press talk volume please.

H📢: (giggles at me and continues to shout)

Sigh. (And yes, that’s a fake sigh, I’m completely stoked that I have to tell my child to stop shouting and I’m not going to get over that any time soon!)

Here’s to all the shouting AAC kids – keep shouting and let your voices be heard (except when we’re trying to put your little brothers and sisters to bed please)!

Harry says… (rude)

Harry says… (rude)

Let me set the scene – it’s the day after kindy and we’re at home when Harry’s speechie  (Aussie slang for Speech Pathologist) arrives for their session. She sits down opposite him on the floor and he immediately starts chatting…

Note: Mary (not her real name) is Harry’s support worker at kindy.

H📱: rude Mary

SP: Was Mary rude or was someone rude to Mary?

H☝️: (points to himself)

Our SP models ‘I was rude’ on H’s device and he nods in agreement and presses the message bar window so his talker speaks the words. This is H’s way of saying that what you have modeled is what he wants to say, along with nodding in agreement. She then clears the message to model the pathway again for H and he instead chooses to say…

H📱: I was noisy (Side note: I was actually at a meeting at his kindy at the time and whilst I was in the office and not in the same room, I could definitely hear the cacophony coming from H!)

SP: Do you understand why you got into trouble for that?

H📱: I understand

And they moved on to chatting about other things…

Throughout that chat I was just bursting with pride – my boy was noisy, understood that he was being rude and consequently got told about it. How wonderfully, boringly typical for a child at kindy.

It can be very easy to make excuses for challenging behaviour from our kids with additional needs – they need more sensory input, they don’t understand the social complexities, they’re frustrated, they can’t fully express themselves – all of which are totally valid and could certainly relate to H when he’s acting like, well, a 5 year old and being pretty challenging. And they’re all also part of the bigger picture when choosing the best strategy of how to deal with challenging behaviour.

But I want H to be included in his world, and I don’t mean special-day-program-at-a-special-centre included. I mean out-in-the-every-day-world included with him, his voice and opinions valued. And in order to be included, he needs to understand the expected social norms and etiquette no matter how boring we may think them. And in order to understand, he needs to be taught. And in order to be taught, we ALL need to believe that he can learn all that he needs to.

Harry being noisy, learning that he was rude and consequently understanding that that behaviour at that moment wasn’t okay are all steps in the right direction. But, as an AAC mum, I’m pretty chuffed that my boy was a little trouble-maker for being noisy!

IMG_4293