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.
Harry says… (The Sentence Starters Edition)

Harry says… (The Sentence Starters Edition)

There’s nothing more exciting than when your child just completely out-of-the-blue surprises you.  I think that for many of us who, for various reasons, are very closely involved with our kids in the steps to each new milestone, it probably doesn’t happen all that often. Through no fault of theirs mind you. If left to their own devices for long enough, I’m sure they’d shock the living daylights out of us on a fairly regular basis. Preferably not in the oh-why-are-my-shoes-being-used-as-mud-pie-toppers but more along the lines of oh-you-drew-this-beautiful-card-for-mummy?!

I had a very AAC-mum-nearly-falling-off-her-feet moment a little while ago… Harry is in the lounge playing, his talker is somewhere nearby on the floor with him and I hear this…

H: Can I please have something to drink?

Now for those of you unfamiliar with how Harry communicates, he mostly uses single words to get his point across and is very effective, as you can read in these Harry says… posts here and here. We’re trying to encourage him to combine words more regularly to make increasingly complex phrases and we’re getting there… But on the whole, it’s one word at a time.

So, with that in mind, you can just imagine the excitement and confusion going through my mind when he busted out the little gem of a question above. Of course I was totally cool about it. I sauntered over with his drink, told him what great manners he had and then, as he shuffled off to keep playing, I pounced on his talker.

How on earth did he put that beautiful little sentence together?

This was a few months ago and so we were still learning our way around his communication app. Mostly we were sticking to words in the familiar category folders that are also in his PODD communication book which he’s been using for a couple of years now. I went in and out of folders trying to replicate his request when I saw, top left of the screen, the pink ‘Sentence Starters’ folder. Aha!

There they were, all these clever little, well, sentence starters. So if you select ‘Can I please have’, another screen pops open where you can select from all sorts of things. And this is where Harry finished off his sentence with ‘something to drink’.

Smart, smart cookie. The thing that really excited me about all of this was not that he was talking in full sentences as my aim is still to teach him all those individual words so he can construct absolutely any sentence that may spring to mind rather than only choosing from a few options. No, the really exciting thing was that he had figured out how to say that sentence ALL ON HIS OWN.

No modelling from me.

No expectations from me waiting, waiting, waiting to see if he would mimic what I had modelled.

Nope, this was all Harry.

And it made me think about how cautious I must be with ever thinking ‘oh, he’s just babbling’ when he’s in his own little world with his talker and saying all sorts of seemingly wacky things (as I know from Harry says…amusement park). I started thinking about T, H’s 18 month old sister, and how all sorts of babbly vocal delights fall from her lips, most of which mean nothing to me. But never is she ignored. We all nod and smile and say “yes, that is a big, yellow truck”, “oh, you want to put your shoes on” without ever thinking that she’s ‘just babbling’ and leaving her to it.

T listens to us speaking and experiments with her voice.

H listens to us speaking and experiments with HIS voice.

Of course modelling is still our most most most (that’s 3 times for emphasis just in case anyone thought I’d gone loopy and was planning on leaving H to figure out the rest on his own!) important tool in helping him learn to navigate through his talker but, for H, I also see the great benefit of allowing him to play with his voice. T plays with hers. She’s currently experimenting with rolling L’s around her mouth and trying out different vowel sounds after each successful L attempt and Harry is experimenting with quick ways to construct sentences:

H📱: I need help – to visit – Gogo

H📱: Can I please have – something to eat

H📱: I’d like – to go to the toilet

H📱:It’s time – to drive

It must also be wonderful for him to hear those perfectly constructed sentences said with his voice, especially when he’s often greeted with a great response when he shocks newbies with his phrases. Nothing like a bit of praise to spur him on!

And while he explores and experiments, I will do my best to give him the support he needs to guide him along and the space he needs to know that he can also do it all on his own.

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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.

Epiphany at the Eye Clinic

Epiphany at the Eye Clinic

Harry loves the ‘Health’ category on his talker. Not hugely surprising though as we are in there quite a bit chatting about seeing the doctor, dentist, nurse or having botox and even just your run of the mill sore throat, cough, sneeze and my old favourite vomit.

I like to think that I’m pretty good at telling Harry when we have an appointment coming up and making sure that I model on his talker that we’re going to the ‘doctor’ at the ‘hospital’ or that he’s having ‘botox’. But this is all just real top level practical stuff and I have been missing out on a decent chunk of communication that was more important to him.

A few weeks ago we were at the hospital for an orthopaedic clinic to check on Harry’s hips and spine. As we arrived for the clinic we were told to head up for an x-ray first. As we were waiting to head in for the x-ray, I modelled to Harry that he was going to have an ‘x-ray’ and he started pressing the ‘x-ray’ button over and over again. Brilliant, I thought, now he knows where that word is, yay me for modelling.

And then a discussion I’d had with Harry’s speechie at our previous session popped in to my head, maybe there was more to this? He really was giving the ‘x-ray’ button a good workout, what else is going on here? So I decided to chat to Harry about how he felt about going to have an x-ray…

H📱: scared

As my heart tightened in my chest, I then carefully talked to Harry (whilst modelling the key words on his talker) about exactly what was going to happen and reassured him that I would be with him and we will be brave together.

Flash forward to yesterday and we were back in the hospital for an eye clinic to check on Harry’s sight. I also knew that he would be having eye drops put in to dilate his pupils that would allow the ophthalmologist to see right into the back of his eyes. He loathes having the eye drops in and I can hear other children crying already as the lovely nurse gently and efficiently pops the eye drops in.

This time I was ready. Whilst Harry and I were waiting (and waiting and waiting), we chatted though exactly what was going to happen, from the bright light that they would shine to the eye drops that the nurse would put in his eyes that would make everything look shiny. I had to quickly program in ‘eye drops’ as we were chatting, but that’s easily done on Harry’s Compass communication app.

And then we went on to chat about feelings. This time I was ready for my next teary moment, but it didn’t come, Harry wasn’t interested in talking about his feelings. Hmmm. Maybe we had covered off everything he needed to know already?

He sailed through the clinic with both the nurse and ophthalmology technician commenting on how well-behaved he was. I showed them both the talker and how we’d been chatting through it all. I love watching people’s faces when they first see Harry’s talker and how he uses it. I can just picture the words ‘presume competence’ forming in their minds!

Talking through this all with Harry’s speechie, she reminded me about how all of us, and especially children, often talk repeatedly about health situations. In fact, I still tell people that when I was pregnant with Tallulah I needed surgery and she’s 1 already. See, I just told you all and it has nothing to do with this blog.  And so when Harry is repeatedly saying CT scan, CT scan. CT scan he may want to talk about his feelings surrounding it or he may just be looking for a little bit of sympathy from someone. And sometimes, like with the eye clinic, he’ll be fine about it all and there will be no need to delve into the emotional side of what’s happened. But I will do my best to ensure that our discussions go beyond ‘doctor’ ‘hospital’ and ‘eye’ so that I empower him with the words he needs and the opportunity to overcome any fears he may have.

And off home we went. Harry asleep in the car with his dilated pupils tightly shut to keep out the bright sun and me feeling a renewed sense of awe in the power of AAC.

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