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!

A Portrait of Inclusion

A Portrait of Inclusion

Last night we went to Harry’s end of year kindy concert (kindy or kindergarten is pre-school for all the non-Aussies). As we close the chapter on our kindy year and get ready to start at big school next year, I reflected on our first year in the education system.

Whilst this year has had its challenges, not once have we had to advocate for our son to be an included and valued member of his kindy. Not once.

Inclusion has been a given.

Inclusion looks like a young boy standing at the back of his kindy class photo because, as one of the tallest in his class, that is where he should be. On careful inspection, the trained eye of his mother can see the kindy director standing close behind him to support him as he stands.

Included.

Inclusion sounds like the glorious cacophony created by 4 and 5 year old voices at their end of year kindy concert followed by a well rehearsed silence. When out of the silence comes the next line of the song spoken by a young boy using his talker, then quickly enveloped again by the enthusiastic singing of his peers. In reality the silence was inevitably not as quiet as I am sure had been practised, but it made his mother’s eyes prick then and again now knowing that his voice was heard and valued.

Included.

Inclusion is a young boy telling the artist who is drawing his portrait to put basketballs on his top because, whilst the young boy may not have the dexterity yet to draw a self-portrait, he can still have his say to ensure it represents him. And he can then paint it with all the colours of joy and enthusiasm that shine through him onto his beautiful self-portrait to be hung up alongside all the other self-portraits of his kindy class.

Included.

These may be only a few examples and we may be only a year into our education journey, but I can’t help but wonder…

If Harry continues to be surrounded by people for whom inclusion is a given, who don’t expect anyone to advocate for it because it’s just what they do, imagine how much we could all learn and grow along the way – his peers, his school, his family, his community and most importantly him, Harry.

portrait

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!

 

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.
Yes, you can say no

Yes, you can say no

Recently I shared how Harry asked to go out for a babycino AND coffee (very smart addition to really get his parents on board with the idea) – you can read the post here.

I was chatting to a friend a few days later and she asked where we went for babycinos and coffee.  And well, we actually didn’t go anywhere. We already had plans to visit friends that day and so I chatted to Harry and explained that we couldn’t go out and what we were going to be doing. He was absolutely fine with it and on we went with our day and I didn’t give it another thought.

But when I explained this to my friend, it got me thinking about how our responses to his requests have evolved.

There were the early days when we were still learning and the only thing that Harry could do was choose between 2 or 3 symbols and so he received each item or activity that he requested. (Please read this post about my ‘AHA’ moment when I understood why this stage in our AAC evolution was, thankfully, short-lived.)

Then there were the times when Harry first had his PODD communication book and we were so determined to show him how important this book was and that it was his voice – and so he received everything he requested.

Then there was the first time he combined 2 words on his PODD book – ‘drive’ ‘park’. It may have been 7am on a cold and wintery morning, but our resolve and sheer excitement over his glorious request had us rugged up and in the car to a foggy, deserted park.

And finally there have been ALL those chocolate smothered pancakes – but honestly those were going to happen anyway, requested or not!

And here we are, back to ‘go babycino coffee’ and while I am no less excited by his requests and comments, I also now know that there is absolutely no question at all that Harry understands that his talker is his voice. And that knowledge has enabled me to simply hear it as the voice of my 5 year old son and, like for any other 5 year old’s request, sometimes the answer is ‘no’.

harry-babycino
But when it comes to babycinos, the answer isn’t ‘no’ for very long! (Image of Harry at a table with a very big chocolate chip cookie, a babycino and his talker in the background)
Harry READS…

Harry READS…

Harry is starting school next year and so we’ve been trying to do some literacy exercises at home. And, undoubtedly like every other mother in the world, I don’t really feel that I have been doing enough. (Hmm, probably time for me to re-read my ‘Dear Mum, you’re doing enough’ post and take some of my own advice).

We’ve got a few variations of the alphabet around the place and we’ve been playing with the first letter of words, reading books and general awareness of letters and words, but nothing too specific.

Harry was playing with his magnetic alphabet board and I spelt the word ‘dog’.  “Do you know what this word is, Harry?” I asked him. (I’m not big on testing him with his talker, but, well, I’m not really sure what I was expecting.)

Harry presses the ‘characters’ folder on his talker and as I’m actively holding myself back from correcting him and redirecting him to the ‘animals’ folder, he says…

H📱: Wags the Dog

WAGS THE DOG!!!!!! Wags the FREAKIN’ Dog people! I am so excited and suddenly wanting to text and call the entire world- Harry will read! Harry will…Harry will!

And then this other thing happened…

H saying ‘Wags the Dog’ in response to my question was so clear and obvious that there was absolutely no denying that he had read the word ‘dog’, but this next occurrence had me remembering about making the least dangerous assumption. And so I am wiping out my initial hesitation and am going to make the assumption least dangerous to Harry. Here goes…

M: We could also write the word wags.

I moved the D and O tiles out of the way and whilst I’m doing this, H picks up a tile and I hear it drop to the floor. He then hands me the A. Okay, he nailed that. I’m trying to remain calm whilst putting the A in place and looking for the W. We can’t find it so I look on the floor next to his chair where I heard the tile fall…W.

WOW.

We spell out wag and have a little celebration with Harry displaying a very chuffed with himself face – deservedly so!

And then (I’m ashamed to admit) I hesitated…

Did that really just happen?
Maybe it was a fluke?
Maybe this, maybe that, blah blah blah…

And, please understand, this has nothing to do with me not believing in Harry, I do. But when you’re walking the fine line between hoping for the world for him and not wanting to burden him with expectations that may or may not fit in with what he wants for his life it’s sometimes scary to just let go…

But I AM letting go and I WILL make the least dangerous assumption, because if I can’t how can I expect everyone else to.

Harry can read.

No maybe’s, no misguided assumptions, no doubts…

Harry can read.

Full stop.

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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! 🙂