I have been thinking a lot about my first post about this communication Journey with our son Evan and thought...Ok, I told you OUR story...and mentioned briefly how WE did it, but if you're there at that point with your kid thinking...great I'll try that too...but HOW do I even start? Well I've been there, and I can sympathise. Even with an onboard Speech Language Therapist you see every other week (or maybe less) it can seem really overwhelming when you have a frustrated non-verbal child grunting and crying because, well, "you just don't understand me!!". Yep, that acting out phase where they may physically act out, you know, tantrums, thumping, biting, vomiting (yep, we had that too), and the all important: every time Mum or Dad talks - SCREAM!!
It can be soul-destroying, frustrating and bewildering for all of you, believe or not those are actually your child communicating, even though it may not seem like it. So HOW do we harness that 'bad behaviour' and turn it into meaningful communication? Thats what I was stuck with 5 years ago, a child that was really happy and unhappy all in one go, I would talk endlessly at him, use sign language, sing songs, read books, point out words..yadda yadda...but it seemed to just pass him by even though he did say the odd word. Then came our crunch time, major surgery, out of the blue, our son had a dislocated left leg that was going to take major work to fix. He was going to be stuck in a pelvic(hip) spica cast for 3 months. Well believe it or not the sunshine in all those storm clouds was an opportunity to connect with our son as he was going to be a 'trapped' audience. It was that and the time was right I guess...but anyway, I am getting off topic.
Disclaimer
Just so you know in a former life (we all have one of those) I used to be a Senior Computer Engineer and have LOTS of experience with technology so I may come across a little technical or give you information you may go "yeah, great, but HOW do I do that?". Sorry, but I will try and explain and if you need help you can always add a comment and I will try and help. Also, remember this is one families journey, one unique childs way of relating and communicating. Every person is different, has different experiences, different problems and skills. It doesn't mean they won't communicate it just means you haven't found the common ground yet between you to start that dialogue. Take heart no matter how overwhelming it seems, break it down into small manageable moments and you may just find a place to start and maybe like us get a breakthrough. I am NO SLT, I have no real experience with this apart from what I have learnt, read, experienced, and tried. This is about how WE went about it and what we found works for us. Others may have other ways, maybe better, maybe their SLT is fabulous and has great ideas. Either way I am not advocating anything or promoting any particular product - I am just telling you how I did what I did and what products I have used and found useful. That said lets give you an insight into what has worked for us.
Stop and think for a moment...
Before you even embark on this if you haven't started already or are still coming to grips with a bunch of failed tries to communicate. Take a step back. We were there too, rushing headlong bombarding our son with words, books, pictures, sign language, hand over hand helping etc. What I didn't realise is I was trying to get him to understand ME, when really I wanted him to TALK to me, so I could understand HIM. Of course its natural to push your language at a child, you wants and
needs and forget or maybe not even realise thats what you're doing. So step back, look at your child, be mindful. What are they doing? Are they actually communicating with their grunts and cries, are they in context? Are they flapping a hand, shaking their head, looking away or maybe even towards something, do they close their eyes on queue when they don't want something. When you ask them a question like "Do you want a drink?" do they cry, reach for it, grunt, babble, or just ignore. All of those are forms of communication. So look at them, take note of these situations because all of them are opportunities for communication. If they reach for a drink you maybe have in your hand, then great you can redirect that activity to a picture card and have them tap that instead. If they flap their hands or clap (like our son did), great you can redirect that activity to a switch button with a 'YES' word spoken or even to a picture card. Its intention, they are showing intention and that is worth redirecting to useful output! Ignoring is still communicating, its a non-response, so maybe they didn't want a drink, so you can use that as an opportunity to say "NO? Ok, would you like MORE food?" so you just acknowledged their non-response as a NO, and maybe it won't seem it but the child probably notices that and will continue to use that as their means of saying NO. In these situations its well worth it to learn basic sign language (pick your method - we use Makaton and NZ Sign) to sign words like NO, YES, MORE, FINISHED, WANT and others that may be handy.
So why am I so interested in this food thing anyway? My kid doesn't eat, they're either tube fed or fussy. What then? Well of course I am going to talk about food, thats my sons motivation, yours might not be and thats Ok. But I bet they love something, what is it? TV? YouTube? Swinging? Cuddles? A favourite toy? So in those situations again stop and think, wait for a moment. What is it your child is doing when you are standing poised with the TV remote, the favourite toy?
If it helps, write down what you think your child loves, even if its just you! While you're at it write down what you notice through the day as noises, try and notice when the noises happen, what are you both doing? Are you talking to them? Asking a question? Are they happily doing what motivates them? Or is it just random? Just watch, take note, take video if necessary. Try and work out what makes your child tick. Its that mindful step back and watch rather than DO that seems to help. If you ever get a quiet moment think about your interaction for the day and you'll realise you communicated in so many ways through touch, words, gestures, and actions. It doesn't have to be a formal iPad AAC App, it doesn't even have to be sign language, or Picture Cards. There are many other ways to be understood.
In our household we use the phrase "He just doesn't understand the rules of the game yet". I have used that with many SLT's over the years. Once our son knew what we wanted from him and how to play that game he was off and 'running' and still is - hes a heck of a lot faster than us too!
Software used (Windows PC (XP/Windows 7)
Ok, so I use(d) a boring old Windows XP Netbook (HP in fact) with no CD/DVD drive and limited USB ports, memory etc etc. All that mattered was I had a computer to do stuff with and access to the internet. I had no fancy camera, I used a standard old Canon 2 Megapixel camera to take my photos
and I just randomly photographed stuff and uploaded it to my PC.
I tried using MS Paint, MS Word, and inbuilt software like it but found in order to adjust the picture size, crop the photo, or whatever I needed something else and it had to be FREE!
So over the years I have been using the following programs on my PC:
Serif Page Plus Starter Edition
- A free Desktop Publishing software that is great to get started with manipulating pictures on a page and then printing it and laminating. I created a series of templates of a certain size box to put photos into and then text to create my choice boards.
PhotoScape
- A free photo editing tool that I found really handy over the years for doing all sorts of edits of my photos and graphics
Google Image Search - yep I just typed into Google Search Engine whatever I was looking for and click on the Images section.
It can be soul-destroying, frustrating and bewildering for all of you, believe or not those are actually your child communicating, even though it may not seem like it. So HOW do we harness that 'bad behaviour' and turn it into meaningful communication? Thats what I was stuck with 5 years ago, a child that was really happy and unhappy all in one go, I would talk endlessly at him, use sign language, sing songs, read books, point out words..yadda yadda...but it seemed to just pass him by even though he did say the odd word. Then came our crunch time, major surgery, out of the blue, our son had a dislocated left leg that was going to take major work to fix. He was going to be stuck in a pelvic(hip) spica cast for 3 months. Well believe it or not the sunshine in all those storm clouds was an opportunity to connect with our son as he was going to be a 'trapped' audience. It was that and the time was right I guess...but anyway, I am getting off topic.
Disclaimer
Just so you know in a former life (we all have one of those) I used to be a Senior Computer Engineer and have LOTS of experience with technology so I may come across a little technical or give you information you may go "yeah, great, but HOW do I do that?". Sorry, but I will try and explain and if you need help you can always add a comment and I will try and help. Also, remember this is one families journey, one unique childs way of relating and communicating. Every person is different, has different experiences, different problems and skills. It doesn't mean they won't communicate it just means you haven't found the common ground yet between you to start that dialogue. Take heart no matter how overwhelming it seems, break it down into small manageable moments and you may just find a place to start and maybe like us get a breakthrough. I am NO SLT, I have no real experience with this apart from what I have learnt, read, experienced, and tried. This is about how WE went about it and what we found works for us. Others may have other ways, maybe better, maybe their SLT is fabulous and has great ideas. Either way I am not advocating anything or promoting any particular product - I am just telling you how I did what I did and what products I have used and found useful. That said lets give you an insight into what has worked for us.
Stop and think for a moment...
Before you even embark on this if you haven't started already or are still coming to grips with a bunch of failed tries to communicate. Take a step back. We were there too, rushing headlong bombarding our son with words, books, pictures, sign language, hand over hand helping etc. What I didn't realise is I was trying to get him to understand ME, when really I wanted him to TALK to me, so I could understand HIM. Of course its natural to push your language at a child, you wants and
So why am I so interested in this food thing anyway? My kid doesn't eat, they're either tube fed or fussy. What then? Well of course I am going to talk about food, thats my sons motivation, yours might not be and thats Ok. But I bet they love something, what is it? TV? YouTube? Swinging? Cuddles? A favourite toy? So in those situations again stop and think, wait for a moment. What is it your child is doing when you are standing poised with the TV remote, the favourite toy?
If it helps, write down what you think your child loves, even if its just you! While you're at it write down what you notice through the day as noises, try and notice when the noises happen, what are you both doing? Are you talking to them? Asking a question? Are they happily doing what motivates them? Or is it just random? Just watch, take note, take video if necessary. Try and work out what makes your child tick. Its that mindful step back and watch rather than DO that seems to help. If you ever get a quiet moment think about your interaction for the day and you'll realise you communicated in so many ways through touch, words, gestures, and actions. It doesn't have to be a formal iPad AAC App, it doesn't even have to be sign language, or Picture Cards. There are many other ways to be understood.
In our household we use the phrase "He just doesn't understand the rules of the game yet". I have used that with many SLT's over the years. Once our son knew what we wanted from him and how to play that game he was off and 'running' and still is - hes a heck of a lot faster than us too!
Software used (Windows PC (XP/Windows 7)
Ok, so I use(d) a boring old Windows XP Netbook (HP in fact) with no CD/DVD drive and limited USB ports, memory etc etc. All that mattered was I had a computer to do stuff with and access to the internet. I had no fancy camera, I used a standard old Canon 2 Megapixel camera to take my photos
I tried using MS Paint, MS Word, and inbuilt software like it but found in order to adjust the picture size, crop the photo, or whatever I needed something else and it had to be FREE!
So over the years I have been using the following programs on my PC:
Serif Page Plus Starter Edition
- A free Desktop Publishing software that is great to get started with manipulating pictures on a page and then printing it and laminating. I created a series of templates of a certain size box to put photos into and then text to create my choice boards.
PhotoScape
- A free photo editing tool that I found really handy over the years for doing all sorts of edits of my photos and graphics
Google Image Search - yep I just typed into Google Search Engine whatever I was looking for and click on the Images section.
I did use an earlier program called QuickPics but it is no longer available, and the graphics are available out there still - Google Patrick Ecker.
Also I registered for a free trial of Boardmaker which gives you a 30-day trial to play with the software and create your own boards, test some out and get your own graphics. It was a handy way to get some early boards done with good well known graphics that I could use without spending $200+ on the software that I may never eventually need all the time.
Other Stuff
I also brought a cheap A4 Laminator, Lamination Sheets, A pencil case to store all my cards in or a cheap plastic lunchbox, a colour printer, scissors, BlueTac, stick on velcro dots (hook & loop) and plenty of other things over the years to do the Low Tech cards we originally (and still) use.
Heres a link to my Pinterest Page too where I keep all my handy to read items on both Low Tech (paper & ink) aids, and the AAC (iPad) communication
I'll be back in a few days to do Part 2 of our Journey - Thanks for reading my BLOG!
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