This is all especially problematic as Owen is Deaf and understands ASL only. If someone wants to say something to him, even without expectation of a clear response… he or she can’t. So often I see people undoubtedly with good intentions attempt to say something to Owen, but stop short. They realize he’s Deaf and simply don’t know what to do. So they rely on that pained, close-lipped half-smile to convey ‘hello’, or whatever it is they wanted to say. Awkward for everyone (except of course, for Owen, who is so used to it he probably thinks it’s a standard greeting).

So here’s something exciting I’ve stumbled on (actually, it was brought to my attention by Laurel at Bloorview – thank you Laurel) – it’s software that allows your selected avatar to communicate in ASL. It will translate on-the-fly – the user can type in an English phrase and the avatar will sign it! Brilliant. Here’s a still from a demo on SignSmith’s website – follow the link below for the full effect. Even if you think you don’t care, go see it – it’s fantastic. (You’ll need the latest Flash player.)

Now, imagine that software, in conjunction with this:

The ASUS eeePC – A teeny, tiny flash-based, Linux notebook that costs around $400. It’s small, rugged and would perform well. Limitations would be battery life, screen size (7″), memory…. but give it some time and that will all change.

Here’s a scenario: we could visit my dad in Stratford, who doesn’t know ASL. He could select an avatar that looks roughly like himself, key in a phrase, and show it to Owen. After Owen stopped giggling, he would probably, at many levels, deeply appreciate the effort.

Photos represent the accompanying slide show, displayed behind me during the presentation.

Delivered October 18, 2007 – Aurora, ON

__________________________________________________________

Thank you for inviting me to speak today. It was quite a challenge, distilling down all I could possibly talk about to just 30 or so minutes. So in order to organize my thoughts, I created a bit of a structure. I’ll share that with you now, so you have a sense what path I’m heading down.

First, I’d like to introduce you to Owen – describe his life so far, and give you a glimpse into our family’s journey through various communication methods. I won’t spend a long time on this part, as you’re all familiar with communication and language approaches. Then, I’d like to share with you the present state of my evolving perspectives – which I can’t guarantee will be the same next year.

There are three topics I invite you, as professionals working with ‘emerging communicators’, to consider:

* What constitutes communication?
* What perceptions and assumptions do I impose?
* What are my motivations?

How to describe Owen…. ?

Owen is 9 years old. He loves dolphins. He enjoys swimming. He thinks it’s funny when things fall over.

His younger brother Angus is his favourite person. Owen also has cerebral palsy, is Deaf and non-verbal, and has a variety of medical issues.

At the moment, he is considered to be at an emerging level of communication – but as you’ll eventually see, I would argue that he does, in fact, communicate just fine. I’m not sure I entirely like that term – emerging level of communication – as it implies that there’s more to come. For Owen – maybe, maybe not. I think it also implies lack of sophistication or subtlety – if you were to meet Owen, you may agree that he can communicate both sophistication and subtlety, without saying a word.

We’ve had a rather long and meandering journey through the worlds of speech pathology, language development, augmentative and alternative communication, and I’ll summarize some of the approaches and tools we’ve explored, researched, implemented.

* Auditory-verbal therapy
* Total communication
* Lip-reading
* picture symbols
* use of VOCA s
* Blissymbolics
* Sign-supported English
* ASL

If you review the list closely, you’ll notice a progression from a strong auditory focus to a strong visual focus… and the reason for that is quite simple. After many years of trying various approaches, I realized that it’s easier to work with his strengths. Not just for him, but for me.

Owen was born Deaf. And the clear indication from the beginning, from all the professionals in our lives, was that hearing loss was something to overcome. And that by all accounts it was going to be an uphill battle. And at first that made sense to me. It was one of many disabilities we needed to ‘treat’. And yes, I wanted him to hear the crickets and birds… and so, we began that long trudge up the hill to teach him to lipread. To learn to listen. To associate meaning to the loud booming sounds – the only ones in his range of hearing.

This clearly wasn’t working. Owen would gaze at me, his therapist, his support worker – whoever was doing his lessons with him – with a look that could have been interpreted as ‘What in the world are you talking about and why should I care’? So, slowly and surely, we progressed through the list you see here. I would find out about things, research them, develop a program, make the materials, train our family and helpers, seek advice from various professionals, and finally, after what was sometimes several months later, I was ready to teach Owen. Within a few weeks we would know that again, we fell short. Over and over again – it was all too much, and yet somehow it just wasn’t enough.

For the longest time, I had a very narrow focus. I thought that communication meant spoken and written English. Period. And this perspective required that I overlook what for Owen would be the most natural mode of receptive communication – ASL. I should add here that he doesn’t sign himself. He has extremely limited fine motor function, and hasn’t yet gestured with a recognizable meaning.

As you can imagine, his expressive communication has posed quite a dilemma. At least receptively, we know that he can see. And we believe he understands because his emotional responses are always appropriate. For expression, however, he is non-verbal, has very little functional use of his hands, minimal head control and doesn’t vocalize (intonate) for meaning. So, we’ve focused our attention to his feet – where he can access a switch moderately well with his big toes. Until recently though, his tone has always interfered. Any time he’s excited, happy, sad, engaged, interested – his reflexive tone would kick in, and take over. A few weeks ago Owen was implanted with a baclofen pump, a device inserted in the abdomen that administers medication through a catheter into the spine. This intervention is meant to relieve neurological tone, without causing the common side effect of extreme dopiness. So, with any luck, he will experience relief from the spasticity and perhaps gain a little control over the dystonia. And even then, the challenge remains: what is the switch for? Is it a signal? Is it a yes? Is it to indicate choice? And what about the device itself? Most are voice or sound output, which he can’t hear.

Currently, our communication approach is this: all receptive communication is ASL. To support this, I became fluent in ASL, and I only hire Deaf support workers. For expressive, well, we’ll see. I imagine it will include the continued interpretation of facial expression, emotional response and then eventually, a technological device that will have caught up to his complex needs.

Let’s move on. What is communication? Really? If I were to define it based on my experiences with many language development professionals, I might say that communication is input/output, emergence and progression, measurable outcomes and evidence-based practices.

However, based on my experiences with my son, I think the word communication could be used interchangeably with connection. Or at least, communication facilitates connection with another person. Here’s an illustration:

We used Total Communication (TC) from the time Owen was born until he was about 3. Picture symbols, voice, signs, schedules, communication books – all ways to facilitate language development. For you – the professionals – this makes complete sense. It’s a way to use the whole bag of tricks… to see what works, to maximize use of the senses, to give every opportunity for the child to understand. But for me, it became this ridiculous juggling act of trying to sign, hold pictures and objects, talk, and engage in an activity – all at the same time. It would take us 20 minutes to build a tower of colourful blocks and knock it down. How much fun is that for a 2 year old? Or for me? It was exhausting for everyone. I leave room for the possibility that Owen did indeed enjoy those activities – but at what cost? Our play had been subjugated for therapy. I think it’s important to protect childhood and preserve natural family interaction. By adding too many abstractions – pictures, labels, cards, symbols… we take away from the experience of the moment and likely add more stress to an already challenging environment. This, of course, is not to say that we should never do therapy… but balance is key.

Current trends in therapy and self-help have us all reflecting on how to be in the now. How to be more authentic. How to not hide behind the words and abstractions which alienate and isolate us. Most of my adult life I have been working towards less talk and more connection. It’s only been in recent years that I see that Owen is already there. In some ways, he is more evolved in spite of his lack of expressive language. Or possibly, because of it.

Perceptions/assumptions

It’s important we acknowledge that we see the world through our own filters. We bring to any situation our entire biographies – our culture, our experiences, our hopes, our fears. This is great – it’s what makes us human – but we can’t kid ourselves into thinking we’re objective. Or that there is some universal truth we all abide by.

As parents and therapists, we impose our values and desires on the child – and especially if the child doesn’t have expressive language, it’s important to acknowledge that ALL perceived interests of the child are projected. We don’t know what they want to say. We only know what we want to hear.

We think we know

* what the child wants to say
* that he or she actually has something to say.
* that he or she will appreciate all our hard work.
* that the child wants to feel successful, and will strive to achieve.

The truth is we don’t actually know if any of that is true.

I have a convenient benchmark at home – my typically-developing 7 year old – and I can tell you that he doesn’t always say what he means, he doesn’t always have something to say, he doesn’t always appreciate my hard work, and he doesn’t always like to work hard. How did I come to make all those assumptions about Owen? It’s human nature, I suppose – to fill in the gaps when we’re trying to make sense of things.

So if I have to make assumptions, why not these:

* Owen wants to feel loved
* Owen would prefer a peaceful, calm household
* Owen will benefit from me taking care of myself
* Owen wants to be accepted as he is
* Owen would prefer to be regarded with affection, not scrutiny or assessment

This perspective doesn’t stop me from looking for ways to connect with my son, but it does slow me down a bit –and help me to remember that what I want for him is just that: what i want for him. Not necessarily what he might want for himself.

Motivation

As a mother, I love my children and take care of them the best I can. And that would be the case whether or not there was someone around to see. However, we all know the pressures on parents, the judgements, the evaluations, the comparisons… and as a result, the striving. For a parent with a child like Owen, I think that becomes multiplied. I have been endlessly praised for my hard work and efforts, hailed as a kind of supermom who can and will do anything for her children. So what does this do to the overworked, guilt-ridden mother who despite all the effort still feels like it’s not enough? I can tell you what happened to me: I felt terrible. I felt trapped. I connected being a good mother with working really hard, and I felt doomed to a life of endless striving. I couldn’t acknowledge that I needed a break. I couldn’t slow down. Until I would be forced to, through circumstance, poor health, fatigue… which adds to the guilt even more.

Over the years, as I started to better understand all that Owen would require in terms of his communication needs, I thought it was my lot in life to have to work harder than other parents of typically-developing children. That my role as a mother had to be different because Owen is different. And to some extent, I think that has to be the case… I am changing diapers long after any of my peers, and there are no two ways about it. However, my goal now is different. My agenda now is not to be a long-suffering, exhausted, hard-working parent. Instead, my goal is be peaceful in my own life. My benchmark is this – if I start to feel like I am working harder than other people around me, I stop and ask myself – who am I doing this for? What in me is being satisfied? Does Owen benefit? Is it costing me my energy and my health to continue at this pace? If I were Owen, what would I want?

So I’d like to connect this topic to your work in this field by way of telling a brief story.

We had a fantastic occupational therapist. Personable, easy-going, patient, creative, ready to try anything. But she was also an employee of a treatment centre who was accountable for the work she did. Every year we would sit down and try to figure out how to quantify Owen’s progress. How to measure it, how to set benchmarks, how to determine success. It was so difficult, as Owen in general is very hard to document. One year we were focused on switch access – working on cause and effect, and introducing timing (getting him to hit the switch on cue). From the perspective of the ‘system’, it wasn’t enough to simply allow us to enjoy the discovery together and sort things out as we went. We needed a plan. A way to record progress. Log sheets for every session – we would record: how many times did Owen hit the switch appropriately? Inappropriately? How long did it take to hit the switch? In order to answer these questions, whoever was working with him couldn’t really attend to the activity itself – it became these intensely focused sessions of staring at Owen’s foot while the timer ticked the seconds away. And we continued like that for months!

When I reflect back on this kind of staged therapeutic activity, I realize how much effort we both expended for the ultimate goal of giving the therapist something to write down. Of course, it also appealed to my sense of duty and achievement – that sense of responsibility for Owen’s development and an assumption that we all had to work extra hard, and maybe we would have a bit of fun. But the process was very disconnecting. It turned Owen into a project – the success of which I unconsciously connected to my success as a mother.

I invite you to consider how you approach the therapies themselves, and the people involved. Would you be doing things differently if you didn’t have to measure the success? Can success only be defined by numbers and percentages? Does your collective need for outcomes, evidence, results in some way disconnect the parent from the child? Or the child from the play experience? Communication and language are methods for facilitating information exchange and connections between people. Is that actually happening? Or has the activity or interaction been overtaken by the intervention or therapy?

So in some ways, I think, the needs of the ‘system’ are in conflict with the needs of the family and particularly with the needs of the child. And today, I’m not making a comment about whether you as individuals should alter that course – but I’m hoping simply to raise your awareness to the idea that your motivations are likely different than the parents’. And both sets of motivations – yours and the parents’ – are likely different than the child’s. And we could ask, whose should take precedence? Whose is the priority?

Thank you.

You are surely too hard on yourself. “Presentable” and “regular” are the loaded words, the dark suspicion that your quest for communication is some sort of misguided response to shame. It is not Owen’s humanity that is on the table, but yours, ours, all of us. This quest for communication is the most fundamental evidence of a deep humanity. In spite of shame, not because of it. And not only in reaching across to Owen, but out to the world, communicating by means of our new scriptures, which is to say, the films we have seen. Similarities, exceptions, differences, the normal and the heroic. We none of us do more than blink an eyelid: yes, no; yes, no.

He’s right. The desire to communicate (Owen’s and mine) is a fundamental urge that must not be ignored. And the barest intention should be honoured, whether successful or not. Right. Back on track.

I have been assuming all this time that independence should be the final communication goal for Owen. To be able to say anything, any time he wants, and to be understood by strangers. And as any alternative communication specialist will likely agree, independence (for Owen) will mean using a technological device. High-tech systems, which include auditory scanning, voice-output, menu-driven/switch-operated frameworks, are highly specific. There is no room for error or interpretation – a user’s output is what it is, and successful communication requires a high degree of consistency on the part of the communicator. So, that is where my energy has been focused – developing a method for Owen to express himself using a high-tech device, in order to achieve independence.

As we progressed through our meeting yesterday, this thought dawned on me: maybe independence is over-rated. I could go on about that from a number of angles, but the relevant one is this: Owen will always require complete personal care and assistance for all aspects of his life, for the rest of his life. He will also always require a skilled communication partner who signs fluently and has deep sensitivity caring for someone so physically vulnerable. And so, why would I want for him to perfect a communication system that is designed to be carried out in the absence of that person? Does he need to produce such exact expression in order for the other person to understand? If his partner gets the gist, isn’t that enough? Some might say no, and probably with good reasons. But I posit that, given Owen’s easy-going, happy-to-be-here nature, and his extreme degree of disability, his getting across a general idea would be, well, fantastic. And maybe enough.

So, low-tech. This can include use of picture symbols, objects, vocalizing, eye-gaze, gesturing, signing – anything that doesn’t require electricity. Things now get complicated for Owen, because of a number of factors. His partner cannot sign and hold pictures or picture boards at the same time. Owen cannot control his eyes well enough to hold his gaze on a picture to make a selection. Owen is unable to free his hands or arms enough to gesture. And interestingly, just like spoken language, sign language ‘disappears’ once something has been communicated – there’s nothing to hold onto, nothing to reference. (Which is why we often use pictures to represent choices.)

In the interest of keeping things simple and harnessing something Owen already does to indicate approval/acceptance/comfirmation/enjoyment etc, we’ve decided we’re going to try the following ‘system’:

Several times a day, Owen will be offered 4 concrete (as opposed to abstract) choices – 1st choice, 2nd choice, 3rd choice, 4th choice (which is always “something else”, so he has a way out.) Always in the same order, always the same choices. So perhaps for Sequence 1, the question will be “It’s playtime. What would you like to do next?” Then, the partner will give 4 options -

• 1 – book
• 2 – tv
• 3 – toy basket
• 4 – something else.

These will be referenced by the same ASL vocabulary each time, in the same order, using the usual ASL method of listing things by counting them off on the fingers. How will we know what he wants? Owen’s Occupational Therapist gave a good analogy: When we hear a waiter list the dinner specials, we wait while she rhymes them all off. Then, she repeats them more slowly – when she gets to the one we want, we interrupt and say ‘yes! that one!’. Owen can do the same – and not with words, but a distinct smile.

Owen smiles all the time – so the challenge will be for him (and his partner) to associate his smile, in that context, with having made a choice. Perhaps we can teach him to ‘unsmile’, or at least change his facial expression, for the rest of the list, the second time it’s given. Which may be easier than teaching him to actively do something he doesn’t already do.

So for now, our efforts will be decidedly low-tech. Although I have to say that, in the assessment, his switch-use was brilliant. He will continue to work on switch skills at school (more on switches in another post) – it’s a fulfilling cause-and-effect activity, and perhaps could be useful for communication – an obvious use being as a signaling device, to call for attention or assistance.

In the next few days, I will write this up and begin drafting the Master Communication Plan, kept in the ‘pages’ section of the blog website.

Incident 1

Owen is fed by g-tube and especially these days gets very little to eat by mouth. He silently aspirates even on his own saliva and adding any food into the mix seems to just be asking for trouble… However, a few days ago, as a special treat, he shared some of my broccoli soup. He can’t really manage the contents of a spoon, so I simply dip my finger in and put a bit on the inside of his lower lip. He loves it – takes a moment to figure out what to do, and then with much gusto, goes about licking it up. He loves savoury foods, much more than sweet. Anyway – he was enjoying some soup with me, and when I was done I absent-mindedly stacked up the bowls and cleared the table without letting him know he was finished. (Typically I would sign to him that the next taste is his last, and then ‘finished’.) His face clouded over very quickly and like a gathering storm moved from surprise and disbelief to realization and disappointment to outright sorrow and weeping, right before my eyes, in just a few moments.

The problem? He wasn’t done yet. Luckily, I had some soup left in the pot and could give him a bit more, and then use language to convey what was coming next. But the damage had been done and the trust compromised, and it took him many minutes to calm down enough to resume enjoying some soup. If he’d had a communication system and the same actions took place, there would have been no asking him anything. He would have had a very hard time getting over himself enough to engage with me to let me know he wanted more. I suppose the lesson here is that if he’d had a system in place, he could simply have let me know when HE had decided he was done… But then what would that look like? He would have to initiate the communication, and then somehow manifest my asking him the right questions.

Incident 2

Not really an incident – more an experience… We were at the Ontario Science Centre today – an almost ideal place to engage with Owen. Lots of visual stimulation, lots of activities, lots to discuss. But we were also there with Angus and a young friend, who kept us running from exhibit to exhibit and who also required extensive mediation regarding whose turn was whose. So needless to say, Owen was simply pushed around and I can’t honestly say that I engaged with him directly for more than a few minutes. What must that be like for him? I feel so strongly that he does indeed have preferences and have something to say, and yet I manage to take so little time to even tell him what’s going on around him. And if we’d had some kind of question-and-response ‘system’ designed to find out what he’d like to do, I can almost certainly say I wouldn’t have used it once.

No answers come to me as I’m writing this. Maybe the reality is just that sometimes we’ll get it all together and he can tell me something, and sometimes he’s just along for the ride – and hopefully enjoying himself for most of it.