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!

 

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Harry says… (cake #2)

Harry is off to a birthday party on the weekend…again. Look, I can pretend all I want with the whole oh-whatever-just-another-kids-birthday-party mum routine, but the reality is that I am not even nearly over the novelty of Harry being invited to birthday parties. I also love that he gets just as many invitations from his therapy buddies as from his mainstream/typical (you know what I mean) buddies.

It takes some serious self-control not to burst into tears of joyous relief each time he receives an invitation or I find one in his pocket at childcare. And a couple of the childcare ones that have taken place at a bowling alley or trampoline venue have come with a note attached from the mum letting me know that they have checked with the venue to make sure it’s accessible or have made accommodations to ensure H is included. High five to you mainstream mums!

But I digress, here is the important cakey bit that happened whilst we were chatting about the most recent invitation…

M: H, look you’ve got an invitation to X’s party.

H📱: cake blow candles excited

M: And tomorrow we’re going to Z’s party.

H📢☝️: up (and then points to his calendar)

M: Sure, let’s write them up on your calendar.

The boy sure does love his cake and apparently 4 is not too young to get on top of your time management skills with an organised calendar. (Reckon I can introduce him to excel yet?!)

A little bit of M insight: for those who don’t know me that well, I am rather fond of a bit of organisation and am partial to an effective excel spreadsheet. 

Tears and Dancing at AGOSCI

Tears and Dancing at AGOSCI

On day 2 (click here to read my overview of day 1) of the AGOSCI Conference the tears started before Gayle Porter even began her opening keynote speech. For anyone not familiar with  AAC, in 2007, Gayle released the PODD communication system which completely revolutionised AAC. PODD communication books and now the PODD pageset on the Compass app have given thousands of people around the world a voice, including my Harry. Not surprising then that the speech therapist introducing Gayle could barely make it through her introduction without getting choked up.

In her keynote, Gayle posed the question about an AAC user’s system: ‘Will I take it to a party?’ Not can I take it, but WILL I take it. She spoke about the importance of long term intervention, of training communication partners and the critical role that parents, friends and family play in ensuring that AAC users value their systems. 

She also addressed how often it’s only the ‘now’ that is on display.  We see videos of wonderfully competent AAC users, but what we don’t see is the years and years of hard work, continuous modelling and remaining hopeful, even when you’re running on empty, to ensure that one day your child will be able to communicate. The hope that one day, these years of modeling will pay off and your child will finally be able to share their thoughts with you. The tears in the hall fell freely from parents, therapists, teachers and even from Gayle.

Later that morning, a young speech therapist bravely shared her mistaken assumption of a client when she was a first year speechie.  With tears streaming down her face, she reflected on how grateful she was to have learnt so early on to never presume anything but competence. And later in the day the tears flowed again from a teacher and speech pathologist who shared the amazing positive transformation in behaviour in a group of pupils with autism after the introduction of a literacy program.

The tears were punctuated by the AGOSCI Conference Dinner. I quickly learned that there is no hanging around the edges of an AGOSCI Conference Dinner dance floor.  Within seconds of finishing your last mouthful of food, the dance floor is heaving and it was the most honest representation of society that I have ever seen. We were dancing using our arms, legs and wheelchairs.  We were chatting using our voices, AAC devices and sign. Our ages ranged from 7 to 70 and no one judged, no one was excluded and everyone danced with a happy abandon that can only be the result of being in a truly inclusive environment (and possibly a few glasses of wine, ahem). I felt the prick of tears sting my eyes as I considered that this was just one dance floor in one place. What about all the other dance floors? And whilst I am sure that there are dance floors like this dotted all over the world, I felt a renewed determination to advocate, plan and hope for the type of world that I want my children to grow up in.

This conference has taught me so much more than I could possibly have imagined. From the expertise and knowledge of the speakers, I am committed to ensuring that literacy is a key part of Harry’s learning.  From the honesty and dedication of AAC users and their families, I am hopeful for a bright, challenging and fulfilled life for Harry. And from the tears, passion, accountability and awesome dance moves of everyone who attended, I know that Harry’s future will be a disco-lit dance floor of inclusion!

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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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Harry says… (The Mother’s Day Edition)

One of the many wonderful things about childcare (in addition to trying to get paint out of clothing and emptying sand-filled shoes and AFO’s) is all the beautifully crumpled pieces of art that come home stuffed into H’s backpack.  Sometimes it’s just a few lines of marker on a torn piece of paper.  Other times it’s lashings of brightly coloured paint where the pure joy of smearing paint on paper is evident with every stroke.

And then there are the Mother’s Day gifts.

In the past 2 years I have received hand made flowers, paintings, a glitter-encrusted framed portrait of H that sits on my dresser and is the reason I am generally out with at least one piece of glitter on my face.  But this year the Mother’s Day edition of childcare gifts has taken the cake.

When creating this glorious gift at childcare, H was asked why he loves me and because of his wonderfully robust communication app, he could choose any reason in the world.

And, well, you simply have to love the reasons a 4 year old has to love his mum…

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Suffers from…

Suffers from…

I was watching TV on Tuesday night when a news story came on about a dad who is going to be walking Tasmania’s Overland Track to raise money for Life Without Barriers. So far so good, it sounds like a pretty nice news story. And he’ll be doing this with his son who ‘suffers from Cerebral Palsy’. And that’s when I felt annoyed.

The young boy in this story doesn’t look like he’s suffering to me.  Far from it, it looks like he has a wonderful life with a loving and adventurous father who makes sure that he is right there with his dad experiencing life at full speed.

It got me thinking about language and how we simply adopt sayings as part of our rhetoric without really considering the words we are using. And unfortunately ‘suffers from’ has become part of that rhetoric.  Even when I was writing the ‘about’ section for this blog, I had to stop myself from typing ‘Harry suffers from x, y and z’.  In autopilot mode, those words were ready to simply fall from my fingers onto the keyboard.

Is Harry suffering?

He is joyful, boisterous, loving, inquisitive, determined, bright and impatient. He also has an acquired brain injury, cerebral palsy, epilepsy and various other medical and physical issues. There are times when his tight muscles cause him discomfort. I know that his noisy little sister who worships him to the point of constantly trying to crawl and climb all over him is probably fairly irritating. I also know that, occasionally, he can find his seizures scary. But is he suffering?  Oh hell no!

I called a friend, to sanity check whether I was becoming unnecessarily outraged and reading too much into words.  He has a chronic illness, so I felt that he would be a solid sounding board for my annoyance.  He hears it plenty – ‘so and so suffers from X’.  And for him it’s a choice. He could succumb and ‘suffer from’ X, but he chooses not to.  Yes, it is part of him, but that’s just it. It’s part of him, not the whole of him.

I think the concept of suffering is complex and personal and it waxes and wanes depending on how we’re feeling at any given moment.  But that feeling is ours to determine, not to be dictated to us by the media. I don’t care that they were simply trying to pull on our heartstrings, words have power.  And none know that more than the media whose share index is determined by those words.

It’s pretty arrogant of us to assume to know what anyone is or isn’t suffering from at any given moment. And when it comes to disabilities, it’s an out-dated and ableist description. You are not like me, therefore you must be suffering.

Looking deeper, my visceral reaction to hearing those words on Tuesday night probably says more about me and where I am in my journey than anything else.  Especially when admitting that I almost used those words to publicly describe my son just a few weeks ago.  Ah, so this is about me – aren’t the things that annoy and frustrate us always about us anyway?! The path to true acceptance of an unexpected life is a long and winding one – one step forward, four steps back, two steps forward and on and on. But I feel that I am taking more and more steps forward and, for now, it’s time to drop the suffering.

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!