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.
Chat

Harry says… (amusement park)

H is chatting with his speechie on his talker when he points to his play iPad, I (being the dutiful therapy mum that I think I should be) tell him that he can play on it later. A few minutes later he gestures toward it again and his speechie hands it to him, looking interested and asking what he would like to show her.

It looks like he had been watching an episode of Little Ted’s Big Adventure on it before and he presses play to start it up again. “Little Ted is at the amusement park” says the Playschool announcer…

Me: Oooooooooooh riiiiiiiiggghhhht *face palm*

H☝️📢: Excitedly squealing and pointing to his iPad to ensure that he has the full attention if his speechie and I.

Me: (to speechie) Soooo Harry has been saying ‘amusement park’ with his talker on and off all day and I have only just realised what he was trying to share with me! (to Harry) Harry, were you trying to tell mum about Little Ted at the amusement park?

H☝️📢: Clearly nods and continues to squeal happily and point to the Little Ted video playing on hid iPad

Me: Oh, silly mum!

H☝️📢: Giggles and nods in agreement and I’m sure I saw a big look of relief on his face too – finally his mum had figured it out!

His speechie took this opportunity to show Harry how he could expand on ‘amusement park’ to say on his talker 📱 “Little Ted – go – amusement park’ to help his silly mum! And the rest of the session continued (with the ongoing involvement of Little Ted, Big Ted, Humpty and the rest of the gang)…

And I was left thinking about a few things:

  1. Never assume anything that Harry says is random. Hearing Harry say ‘amusement park’ at lunch and in the car seemed fairly arbitrary, but quite clearly it wasn’t.
  2. It’s so important for him to have the opportunity to explore his device. I don’t remember having ever modelled ‘amusement park’ to him, but he knew exactly where to find it on his talker and, thanks to Little Ted, probably has a pretty decent idea of what it is too.
  3. Don’t under estimate the educational power of a small fluffy toy bear going on a ‘big adventure’

Amusement Park.

Have PODD, will chat. Part 2

Have PODD, will chat. Part 2

In ‘Have PODD, will chat. Part 1’, I discussed how before we could get started with modelling on the PODD or have any expectations of Harry even using it we first had to get into the habit of taking his voice everywhere. Not quite as simple as it sounds, but once the habit was formed, we were hooked. Don’t get me wrong, there is still the odd occasion when we find ourselves somewhere without Harry’s voice (even just writing that makes me feel bad) but Harry has developed a brilliant strategy to ensure that those mistakes are minimal.

When Harry’s PODD communication book first arrived, we were given a few brightly-coloured rubber wrist bands printed with the following words ‘I have something to say! Please get my communication system.’ There were little ones for Harry and big ones for me and the aim was for both Harry and I to wear the bands and for him to learn to wave his arm that had the band on to show that he had something to say and wanted his PODD book. Very clever. The importance of using these wrist bands was not lost on me. And we did. For a while…

Harry's last remaining bright pink rubber band that has 'I have something to say' visible and printed in black on it.
Harry’s last remaining bright pink rubber band that has ‘I have something to say’ visible and printed in black on it.

The trouble was, for Harry, a brightly coloured wrist band on his arm looked to him like a big, delicious chewy. I can’t even tell you how many we went through! Unfortunately the wrist bands weren’t the solution for us at that time.

And after that, well the truth is that we just forgot about ensuing that Harry had a specific and easily recognisable way to ask for his book or device. I will comfort myself for this oversight by saying that, on the whole, Harry’s device is usually within his reach. But what about the situations when I’m not around to ensure that his book or device is just an arm’s length away? What happens then when he has something to say and no one notices him gesturing for his book or device?

Enter into the picture Harry’s little sister, Tallulah. As soon as she was over the first few months of being a quiet, sleeping newborn she was one seriously chatty little girl. Whenever she was on an especially chatty roll and Harry would point to her or perhaps give his sign for ‘noisy’, we would laugh and say ‘yes, she’s so chatty’ whilst giving a sign for chat.

Now, I have no idea if it was any kind of legitimate sign that we were using and we certainly weren’t even thinking that we were modelling that sign with any intent. It was simply a part of the sentence. It’s amazing how regularly we all punctuate our words with signs without even realising it. The sign we were making was made by holding our top 4 fingers together and opening and closing them against your thumb, like you might sign ‘quack’.

Slowly I noticed Harry making this sign at times when Tallulah wasn’t around. Hmm, that’s interesting…

And then with closer attention, I noticed that he would follow this sign by pointing to his device.

*ding* Light bulb moment!

Harry had taken our sign for describing his chatty sister and was using it to tell us that he wanted to chat! What a resourceful little sausage!

The minute we made the connection that Harry’s new ‘chat’ sign meant that he wanted his talker, our world changed. And undoubtedly so did his! We made sure that everyone knew what the sign meant and with that, Harry now had a means to demand access his talker anywhere, any time.

As soon as Harry is strapped up in his car seat… H☝️: ‘chat’

At the table, if I haven’t yet popped his talker in front of him… H☝️: ‘chat’

At childcare whilst playing with his buddies… H☝️: ‘chat’

The second he wakes up in the morning… H☝️: ‘chat’

Anywhere, any time… H☝️: ‘chat’

This simple sign represents incredible power and autonomy for Harry.

Be it a sign or a wrist band, a sound or a switch, by ensuring that Harry has a means to clearly demand access to his communication device we ensure that the ownership of Harry’s voice remains exactly where it should be. With Harry.

Have PODD, will chat. Part 1

Have PODD, will chat. Part 1

Before Harry was demanding (and I do mean demanding, not requesting) to use his talker whenever he had something to say and was initiating communication. Before his talker was a permanent part of the paraphernalia that we cart around everywhere. Before any of that, we had to instil one simple habit. Take his voice with us everywhere.

I remember receiving Harry’s first PODD communication book, I was so excited…and absolutely terrified! What is this book filled with symbols? How am I ever going to learn it? And if I’m worried that I can’t learn it, how will Harry ever learn it? We’d already had our expectations for Harry’s communication completely shattered by a rogue neuro-psychologist whilst in hospital, so my hope for real, robust communication had certainly be challenged. (If only I’d known about The Power of Yet then, but that’s a post for another time.)

The first task that we were given by H’s speechie was to carry the PODD book around everywhere for the first couple of weeks and not to pressure ourselves into using it. Just get into the habit of taking it everywhere with you, she said. It was an A4 sized book with a big spiral binder and at least half an inch thick, so it was a sizeable piece of kit. But it was so much more than just a chunky spiral bound book.

Harry's firs PODD Communication Book showing 20 symbols on the front page and a plastic dinosaur toy for scale!
Harry’s first PODD communication book showing 20 symbols on the front page and a plastic dinosaur toy for scale!

Within its colourful symbol-filled pages lay the possibility of real communication, of Harry being able to tell us so much more than what he wants to eat or whether he wants to play with blocks or cars. It held the symbol for “I love you”! Just carry it around and don’t stress about using it, she said. Puh-lease, I was going to be a champion AAC mum and would be talking to Harry in the PODD about ALL. OF. THE. THINGS. and ALL. OF. THE. TIME!

Yep, no prizes for who was right.

Creating a habit to take something with you everywhere is not quite as simple as it may sound. Especially when it doesn’t exactly fit in your back pocket. There was a lot of this kind of chat in those initial weeks and months…

Hmm, it doesn’t’ fit in my bag. Oh okay, we’ll add a shoulder strap. (weeks pass) Good, the shoulder strap definitely helps.

I’m just popping into the shop, we’ll leave it in the car. Hmm, that would have been a good opportunity for communication, wish I had the PODD with me.

Me: Did you bring the PODD? J: No, I thought you brought it.
J: Did you bring the PODD? Me: No, I thought you brought it.

And sometimes I did have it with us, but I just didn’t feel like bringing it out. Maybe I was tired and not in the mood for modelling. Maybe I felt vulnerable and didn’t have the emotional strength that day to deal with people staring.

And you know what, looking back, that was all okay (and sometimes, even now, still is) . What mattered is that we were on the path. We had a robust communication system for Harry and we were absolutely committed to ensuring that he would be able to communicate to anyone about anything, anywhere, any time.

This time, we just had to give ourselves a chance.