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!
When people see or read about Harry using his device/talker (his iPad with the Compass communication app that is his voice), I think there is potential to assume that this has all been smooth sailing for us. Harry is a serious chatterbox on his device and I probably look pretty competent and confident with it all. But let me assure you, that chattiness and my air of composure belie months and months of serious indecisiveness from me and some pretty major rejection of the talker from Harry! Oh yes, the device indecisiveness (try saying that 10 times fast) was gargantuan.
Bear in mind that at this point Harry already had access to a robust communication system with his PODD (Pragmatic Organisation Dynamic Display) communication book, so I* didn’t have the pressure of him not having a way to communicate with us. And with that pressure off, I was then able to sit and mull over my decision and change my mind more often than Lady Gaga changes her hair.
There was, however, one thing that I was certain about from the very start – I wanted his device to be an iPad. That was a non-negotiable. And my reasoning was this; Harry has a lot to learn about his talker and, therefore, he is going to be completely reliant on his communication partners to show him how to use his new talker. And those communication partners are not just Jamie and I and his speech therapist – it’s his gogo, his aunt, staff at childcare, then kindy, then school. And let’s also be completely honest here, modeling on a device, PODD book or any other form of AAC (Augmentative and Alternative Communication) is much harder, much more time consuming and takes much more personal investment than talking to a child who eventually just starts talking back to you. Yes, of course the results far outweigh that personal investment, but I am asking for commitment from people (whilst wonderful and caring) may only spend time with Harry once or twice a week. Hence, I also wanted to consider them in my decision as they will directly influence Harry’s success.
I knew my gut instinct was right the minute I tried the Minspeak device.** It was the little things – I couldn’t find the power button, where was the volume control and why does pressing a dog button followed by a rainbow mean ‘hello’ (possibly/definitely not the correct combination, but Minspeak and I were just not meant to be). We brought it home for a trial, I threw a tanty with it within the first 2 nights, put it back in the loan box and there it stayed. A little bit of personal insight here – I loathe it when I can’t master something. As a child, I used to hide behind my bedroom door and shout at my Speak and Spell (remember those?!) if it ever dared to say I had spelt a word incorrectly, so you can just imagine my frustration at not being able to make sense of a complex system like Minspeak in record time! And that’s just it, this device is absolutely for Harry and needs to fit in with his requirements, but it does also need to fit in with his communication partners, we are all part of his communication journey and success.
So, must be an iPad – tick. Phew.
Now onto which communication app…
We were considering a variety of communication apps which all looked pretty good to me so I had to trust my instincts about each app and listen to the great advice of a few speech therapists who were helping us with this decision.In hindsight, Harry would probably be doing pretty well on any of the apps that we were considering but, as far as I was concerned, if I chose the wrong one he was never going to be able to say a thing and if I chose the right one he would be reciting Shakespeare. Ridiculous I know, but that was how heavily this decision was weighing on me.
I follow quite a few blogs of parents of AAC users, so it was also hard for me not to think; well, their kid is doing so well with x app and all their reasons for choosing it were really sound so surely that must be the app for Harry? Oh, the indecisiveness…
In the end it came down to practicality, we chose the app that used the same Boardmaker symbols as his PODD book and that also had a fairly similar structure. It just made sense to stick with a system that he (and the rest of us) were already visually familiar with. And as luck would have it, a few moths later I was at a workshop with Gayle Porter, who created Harry’s PODD book, and she showed me the new PODD pageset – oh happy days! Even though we were already a few months in to using a different layout, I am so glad we switched across to the PODD pageset that he now uses. Now we had the perfect digital companion to his PODD book. Not only is it a great system, but all his communication parters were already comfortable with the organisational layout of his PODD book so the transition was fairly easy.
Compass app with the PODD pageset – tick.
Nearly there, right? Not quite! We have an iPad, we have an app, but now Harry needs to access it when he’s sitting on the floor, at a table etc. Enter the iPad case. After mucking around with a sturdy case without a built-in stand and carting around a separate stand, we took the plunge and got the AMDI iAdapter case with a pull-out stand. Taking 1 piece of equipment for communication is enough to remember, but 2? Not going to happen. Finally, the iPad was actually at the correct angle for Harry to access and it has a shoulder strap which is absolutely vital as I can easily sling it over my shoulder to ensure it’s always with us. Plus it has a built-in speaker, essential for noisy childcare centres or school classrooms and is virtually indestructible.
Indestructible case with stand, shoulder strap and built-in speaker – tick.
The final piece of the puzzle took a few more months as Harry initially seemed to access the screen pretty well. The app has 60 keys on each page, so you need pretty good accuracy to correctly select each key. We had a LOT of mis-hits in the beginning and it soon became obvious that these mis-hits were frustrating Harry as he wasn’t having quite enough success and was rejecting the talker at times. Enter the keyguard, the final piece of the puzzle. It’s a thin piece of perspex that surrounds each key to make access easier and to help you avoid hitting more than one button at a time. With the addition of the keyguard Harry’s accuracy improved and finally, finally we had found our perfect set up! For now…
Keyguard – tick.
The process of finding the right device is fraught with excitement, doubt, trial and error and it’s easy for me to sit here on the other side of that decision and say ‘don’t worry, it’ll all work out’ because I remember that, at the time, I was completely consumed by it. I believe that the most important thing is to be on the journey, to be looking for the right system to communicate with. Then, when you’re ready, just take the plunge but be prepared to try something different if option 1 doesn’t look to be quite the right fit because when you do find the perfect fit, you’ll know all about their first celebrity crush and excellent toilet humour!
* When I say ‘I’, I really mean ‘we’, Jamie and I. All decisions concerning Harry are always made together. Although, the chronic over-thinking about every minuscule detail is my burden to bear – he does his best to ease me of it, but I am still quite firmly attached to that particular cross.
** I know children and adults who are phenomenal communicators on Minspeak and other dedicated communication devices so in no way am I saying that the iPad is a superior device, just that it is a more appropriate device for Harry right now. There are tons of reasons why a Minspeak or another dedicated device would be better for someone who has a more complex understanding of English or who may need better access support or who does better with the particular motor plan of Minspeak etc etc. Who knows what’s down the track for us, Harry may choose to use Minspeak when he’s older and I’ll just have to hide behind a door and shout at it until I master it.