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!

 

Curious Kids and The Talker

Curious Kids and The Talker

iPads are the Pied Pipers of the 21st century. Kids can sniff them out from a mile away. The minute a child switches off that home button and decides they want a break from their iPad, another 10 pairs of little hands magically appear ready to click and swipe their way through your array of apps. And that is great because as I mentioned in this post about choosing Harry’s device, we wanted H’s talker to be an iPad because of it’s ‘mainstream’ accessibility and understanding by all. But that also means we have to be prepared to handle the magnetic pull of children wanting to play with Harry’s talker.

Last weekend we were out with a few friends and their kids who, whilst I wasn’t paying attention and Harry had moved away from his talker, explored Harry’s communication app. They managed to navigate through to an editing page and one of the older kids called me over as he was worried they would break something. It wasn’t a big deal as we have locks in place so it’s pretty hard for someone to unintentionally edit anything, but I told them that the iPad his Harry’s voice so it’s best for them not to touch it. I could see the look of concern on their faces like they had done something wrong and off they disappeared, away from Harry’s voice.

Hmmm the whole point of choosing an iPad, and in fact the point of any communication system regardless of the hardware, is to ensure that the AAC user is included. And yet I had unintentionally managed to achieve the complete opposite.

In a wonderful talk I went to last year (part of this AAC User Lecture Series) given by an incredibly competent 5 year old AAC user, he advised parents not to let other people touch your child’s device because it is their voice. It’s excellent advice and was an important insight for me to see the talker from Harry’s perspective. But I had taken this advice far too literally and not thought through strategies for allowing kids to see and understand Harry’s device and to also include Harry in that process.

Yesterday we had the opportunity to test out a new approach. Our new neighbour and her 4 year old son (let’s call him Tom) came over for a visit and again, when Harry had moved away from his talker, Tom came over to the talker and started to explore. His mum looked a bit worried, but instead of me telling Tom not to play with it I asked him if he wanted me to show him how it worked. He nodded eagerly. “Harry,” I said, “do you mind if I show Tom how your talker works? You can also come over and show him if you’d like to.” Harry gave  me a quick nod of approval and carried on playing where he was. I started to show a very engaged Tom the talker and, with the Pied Piper in action, Harry quickly shuffled over to where we were. “You can also show Tom your talker if you’d  like to Harry”, I said. Harry reached over to his talker and navigated to the ‘People’ category and said:

H📱: neighbour

Tom and his mum smiled whilst Harry pointed to Tom and I was doing internal high 5’s!

Tom had been given the opportunity to better understand H’s talker that he’s naturally very curious about, H had the opportunity to show Tom himself how he uses it rather than me managing the whole situation but also, H wasn’t under any pressure to ‘perform’ on his talker. To me, this is important, as I don’t want H to feel he has to use his talker if he doesn’t have something to say. We don’t tell verbal kids to ‘say orange, say truck’, so I don’t want to tell H to ‘show us where ball is’ or demand that he uses his talker.

As advised by that clever 5 year old AAC user, I did still tell Tom that the talker is Harry’s voice and not something to play with, but only after he’d had the chance to see the talker in action and to better understand that it is Harry’s voice. His curiosity had been rewarded, not reprimanded.

Now to set up another time to catch up with the kids from last weekend to try out my new approach!

Picture shows Harry's talker from the top with his hand open across it and another person's finger on it.
Picture shows Harry’s talker from the top with his hand open across it and another person’s finger on it.
A Mum at AGOSCI – Day 1

A Mum at AGOSCI – Day 1

Inspired. Amazed. Intrigued. Excited. EXHAUSTED.

And that’s just a bit of what I’m feeling after day 1 at the 2015 AGOSCI Conference.  AGOSCI describes itself as an inclusive group interested in enhancing the participation of all people with complex communication needs. Their vision is for people with complex communication needs to participate fully in all aspects of life. No surprise then that I, as the mum of an AAC user, am a fan! AGOSCI members are speech pathologists, support workers, teachers, aides, AAC users, parents and more.

The top 4 messages that I felt were repeated to me throughout the day were:

  • ALWAYS presume competence
  • AAC users need access to robust communication systems all the time
  • Communication partners are vital to success
  • Model model model

Now, to those of us actively supporting our children or clients and believing in them and their potential to be autonomous communicators, this may seem pretty obvious. But, unfortunately we aren’t (yet) the norm.  There are so many children and adults out there who do not have access to comprehensive communication systems.

We were almost one of those families, but luckily we were introduced to a wonderful speechie who chose to presume competence and model the PODD without any expectations from H to prove that he was ready for it.  But that’s a post for another time.

Karen Erickson, in her opening keynote address, made an incredibly inspiring and passionate speech about the importance of literacy in AAC. It was inspiring enough to earn her the hashtag #KarenEricksonRocks on Twitter! As she explained, AAC is much broader than just a voice output device. It is all of the aided and unaided modes that people use to communicate. Thinking about Harry, that is so true and is what I am celebrating in the Harry says… posts. H uses his voice, key word sign, gesture, facial expressions, a PODD book and an iPad to communicate with us. But in order for him to say precisely what he wants to say, he needs to be literate.

As Karen said, an AAC user can learn hundreds of symbols in their communication system, so 26 uppercase letters should be pretty easy. Goosebumps.

In Jane Farrall’s session, AAC: Systemic Change for Individual Success, she stated the importance of providing every individual with complex communication needs with a communication system that enables their right to communicate.  Yes, their RIGHT to communicate. Further to that, she spoke about the pivotal role that parents and all communication partners play in the success of an AAC user. Parents that instinctively know the principle of the least dangerous assumption and presume competence whilst making sure that communication is ‘all day every day’ will see the most success.

And that was certainly on display in the lecture from a wonderfully devoted mum who, after attending a previous AGOSCI conference, decided to challenge the presumption from teachers that her daughter was illiterate and take matters into her own hands.  After the introduction of a robust communication system and by incorporating literacy into her AAC, she is an excellent communicator with ever-improving literacy.  And I saw how well all their hard work had paid off, as I had the privilege to chat with her briefly.

Jane also spoke of the importance of learning from AAC users, which Janelle Sampson presented on earlier in the day about her AAC User Lecture Series. Who better to help us understand the complexities of being an AAC user, than AAC users!

Another mum who presented spoke of having open expectations of her son and how, when he is unsettled or throwing a tantrum, she uses communication to work through the behaviour with him.  Whilst the easy thing would be to just scoop him up in her arms and cuddle him, she chooses to empower him to ‘use his words’ and to, therefore, become responsible for his behaviour.

And as Jane had said earlier in the day, behaviour doesn’t get in the way of  communication, behaviour IS communication.

In the final workshop of the day, a speech pathologist spoke very honestly of the incredible responsibility that she feels to ensure every new client she meets is able to become a competent communicator and find a robust communication system that’s just right for them.

Well, from a mum, I would like to say thank you. Thank you to all the speech pathologists, support workers, teachers, aides, parents, AAC users and carers who choose to take on that responsibility and ensure that our children’s voices are heard, no matter what form their voice may take.

And that was just day 1!

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The guided access model

The guided access model

The guided access mystery has been solved!

For a few days now, J and I have been baffled by seeing H happily playing on his Playschool app or checking out his photos on his talker iPad. We keep that iPad locked on his communication app using guided access* with a 4 digit pin. Guided access also means he can’t get stuck into some creative programming on his communication app while I’m not looking! However, a certain cheeky little monkey has figured out exactly what to do about that and I caught him red-handed on camera! Brilliant. Have a quick watch of exhibit a:

Click here to watch – Guided access mystery video

Let it be known that I am absolutely chuffed about this! I love that he has totally out-smarted us and I hope that he continues to do so.

It did get me thinking about modeling. Right from the beginning of our AAC journey when we were first using a 12 location PODD communication book with Harry, our speechie told us to model on the PODD and not to worry whether he was looking or not. And definitely not to force him to look. Just keep modeling and keep engaging him with things that motivated him – there was a lot of food and Wiggles chat!

Even now, I still sometimes find it hard not to say ‘look Harry, look at this button’ as I don’t want him to miss what I think is an important modeling moment. But I don’t need to do that and the mystery of the guided access has proved that. We have never drawn Harry’s attention to times when we’ve been putting guided access on and off, but quite clearly he has been carefully paying attention, watching every key stroke and committing it to memory. Until the time was right, and boom, hello Playschool goodbye communication app.

Time for a new guided access pin.

* For those of you not familiar with guided access, it’s a clever tool on iPads that allows you to lock into an app so that when you press the home button the app doesn’t close. It also allows you to make specific areas on an app not respond to touch. This is especially handy when you don’t want wandering little hands to make crazy programming modifications or to click through to the App Store and have some fun with your credit card! It’s also fairly involved to get out of guided access – you have to press the home buttons 3 times, key in a 4 digit pin, press a small button on the top left corner and then press the home button again to get out of the app. So all in all, a fairly complex maneuver!