Following is the speech/presentation I wrote and delivered for the Children’s Treatment Network – a new virtual therapy center for children with disabilities for York Region (the region north of Toronto). It is ‘virtual’ because there is no physical location – therapists are connected and referred by phone, email and web services. The audience was comprised of therapists of all kinds (speech-language pathologists, physiotherapists, occupational therapists), students, CDAs (Communication Disorder Assistants) and parents. I think the conference was called ‘Emerging Communicators’ – it was designed to offer parent perspectives to professionals around the issues of developing communication for non-verbal people with physical disabilities. I’m reprinting it in its entirety (careful – it’s long!), but will be choosing some themes to discuss further in later posts.

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.