Sometimes I cheer people up.   Not because I try to, but because sometimes people will compare their own stresses to what they assume are mine and will be drawn to ‘count their blessings’.  I suppose I should live and let live, but I am drawn to comment…

(I find this type of post hard to write, so I will adopt the literary device of speaking to you, the reader, as though you are the one who was stressed out and – after being inspired and counting your blessings – is now feeling better.)

It’s All Relative

My experiences with my child are extraordinary.  Uncommon.  And have evolved to this point over many many years.  No one handed to me a diapered, tube-fed 11-year-old boy who – despite what well-meaning people want to think – is not improving or getting better.

Rather, I had a complicated pregnancy.  Which required surgery in utero. And then I had a sick baby.   Who turned out to be deaf.  Who then turned out to have multiple significant disabilities, revealed excruciatingly slowly over a long decade – revealed not by things happening, but by things NOT happening.   The only actual shock was the first one – the moment I understood the routine ultrasound was abnormal.  My capacity to absorb information and alter course has increased a million times over since that first shocker, and yours would have too.

Your own experience is your own experience.  You might find it distressing that your child is not doing well in school, or that your baby is colicky, or that your child says she hates you.  And I can fully understand why you might feel like I’m the last person you would want to complain to about it.   (And honestly, I’m too tired to really give you support anyway.)  But you should not dismiss your completely normal stress response because you think I’m worse off.

It’s Disconnecting

People often tell me I’m inspiring.  When it’s other parents in similar circumstances, I can appreciate the sentiment.  And there are occasionally other situations when it feels appropriate and authentic.  But when you said it just now, it made me wince.  Because it was followed by ‘when I face (insert difficulty here), I think of all you have to endure and I count my blessings’.  (Those darned blessings again!)  So what does that mean exactly?  What are you trying to say?  And how do you suppose I might feel, hearing that?  Should I feel good?  Would you?

This might feel unfair, I know, but I’ll say this anyway:  It’s a little like showing up in a soup kitchen, ladling out a meagre portion to a starved, beaten-down man and saying “You’re so inspiring!  Look at what you have to deal with!  I am grateful I’m not like you!”  (Did I just call myself a starved, beaten-down man?)

I suppose what I’m saying is that, even if you’re feeling and thinking it, it’s really not necessary to share it with me.  In this case, the spoken admiration is just your swallowed fear.  If you’re thinking it makes me feel good – it doesn’t.

It’s Not Actually True.  Maybe.  If You Asked You Would Know For Sure.

Please don’t get me wrong – I know that you care for my family and me and are doing your best to express it.  But your statement reveals that you think I have a really hard life – and that always invites pity.  What you fail to realize is that again, it’s all relative.  You, stepping into my life, would certainly take some time to adjust and for sure it would feel like a very hard life.   But that is not the case.  I’m not you and I never was.  I don’t think I have ever thought I have a hard life – but I do have deep joy and sorrow and fulfillment and grief that make for a very full life and I would tell you all about it – if you simply asked.

Maybe you do want to know, but instead you say ‘I just can’t imagine! It must be so hard.”  (followed by “You’re so inspiring!”)

There is no room in this exchange for me to tell you that most times I don’t actually wish my son was different, only that the world was more accommodating.  That my hopes for my son used to revolve around achievements like walking and talking but over time devolved to improved sitting and swallowing and now are simply about not choking or aspirating.  And that actually, the lowered bar brings so much more peace than all that pursuit of progress. There is no opportunity in this conversation to say that I live every day wondering if he is going to live until tomorrow and that if he doesn’t, the depth of my sadness will only be matched by the enormity of my relief.   You haven’t asked me what I’m going to do when he’s adult because maybe you don’t want to hear me say I don’t know, I really don’t know and maybe he won’t even live that long.

It’s not hard to say any of this because it’s all so very true and I live it every day.  Hard would be denying it.

Maybe We’re Not That Different

“Look for the similarities.”  I had a therapist say that to me once.  Many times actually.  Look for the similarities, not the differences.  That’s where you’ll find the healing.  I tend to agree.

The world is full of disappointment, excitement, pain, passion, beauty.  I feel all of it, and I’m quite sure you do too.   Let’s talk about that instead.

(Great Wolf Lodge – Owen, Angus, M and T)

When Owen was younger, my biggest wish for him was to have friends.    I created inclusive play environments, sent him to programs that could seamlessly accept him and his support workers and spoke positively to other children about how Owen was really just like them underneath.  I bought into this notion that if only other kids could see the ‘real’ Owen they would want to be his friend and spent time with him.  They would learn how to sign and use his communication method of the current day (“pick a method, any method…”) – oh, and even use his switch to play turn-taking games!

There is value in these endeavours and in hindsight all were worthwhile, for a whole slew of reasons.

But what about friendship?

I ask myself now, even if this idyllic scene came to fruition, how is this even close?  Sure, Owen has clear facial expressions to indicate his overall likes and dislikes, but nowhere near the nuance of language and/or communication required to establish an independent relationship with someone.  I guess we can define ‘friendship’ any which way, but even the most simple definition of friendship must include the requirements of being reciprocal and voluntary.

Based on this, I can say now with confidence that Owen does not have a single friend.  He does not choose who he spends time with, he does not remember birthdays and he does not lend a helping hand in times of crisis.  And there is not a single person who comes by the house to see Owen who isn’t family or a paid caregiver or from a social services agency.

Here’s what makes this all ok:

Owen experiences moments of connection throughout his day that seem to make him glow from head to toe.    When his brother holds his hands walking down the street.  When Sallyanne or any of his other caregivers arrive for the day and he nearly jumps out of his seat with joy.  When Angus’ friend, D, makes faces at Owen to get a laugh, and announces ‘Owen’s cool!’.

I love and appreciate these moments for what they are – and I don’t pretend they’re something they’re not.  Calling anybody his friend does a disservice to Owen and these experiences because it’s simply not real.  It’s an attribution of qualities that only serves to demonstrate the ‘generosity of spirit’ of the person saying it.  Or, only serves to mask the discomfort of reality.

A happy post for a change: Owen was at summer camp for the past two weeks at a joyful little place called Adventure Valley. AV is not specifically a camp for children with disabilities; it’s a private, non-religious day program in Thornhill, at Leslie and Steeles (here in Toronto), run by a lovely woman named Lynda Fishman.

Lynda is a friend of a friend who believes in the benefits (for all children) of integrating typically-developing children with children with disabilities. (Note to self: why is this still unusual?) She also holds dear the notion of families doing activities together – in this case, siblings attending summer camp together. So, after introductions, and despite the fact that the camp was full for July, she invited Owen and Angus to attend.

I was deeply impressed for a number of reasons. To start, Owen himself is a lot to get one’s head around. He has complex medical needs, requires significant physical accommodation and extensive alternative programming. Lynda knew all this going in, and without asking how or what or why, she just said “come. we’ll figure it out”.

The camp is also expensive. It’s a beautiful private facility on manicured grounds with 2 swimming pools and regulation tennis courts. Full meals provided daily, extensive programming, 3-to-1 staff/camper ratio. 4 x more costly than the local community center camp, and I can see why. (Sending 2 children to camp for 2 weeks (including transportation) costs about $2000.) So here’s the other reason why I was impressed: Lynda asked for funding on HER end – I didn’t have to do it! AV is connected with an organization called Chai Lifeline, which provides programming funding to organizations who seek to include children with illnesses and disabilities and their siblings. Chai Lifeline generously funded Owen’s full camp fee.

There’s much to say about Owen’s experiences at camp, which I will cover in another post. This post is more about Adventure Valley itself. I’ll detail a few things though, so that readers are not making assumptions about what AV does and doesn’t do:

• There were maybe 3 or 4 other children at the camp with 1-to-1 facilitators. None had extensive physical disabilities. I believe there were a couple of other children with learning and/or cognitive disabilities who did not require 1-to-1 support, but who were followed closely by AV’s 2 Integration Coordinators.
• I sent Owen with his new facilitator, Sallyanne. I, not AV, paid her. She was responsible for all of his physical care, his integration into activities and his overall wellbeing. Staff at AV was very helpful when called upon, but Sallyanne did the bulk of the work.
• Owen was placed in his age-appropriate group and participated in the activities that made sense for him. Not all activities could be adapted to include him, although efforts were always made.
• AV is not completely wheelchair-accessible – there is a 2nd floor activity room where many gatherings occur. Often Sallyanne would corral a strapping lad (staff) to help her carry Owen and his chair up the stairs; other times they would opt out of the activity. And yet other times, if the activity didn’t have to happen upstairs, the group would relocate downstairs.
• Sallyanne is a CODA (Child of a Deaf Adult – 2 Deaf parents, in fact). Her ASL is improving, but primarily she signs SEE (Signed Exact English). She is hard-of-hearing and completely functional in an oral/hearing setting. Because of all of this, she was able to interact/communicate with everyone at the camp, and still provide Owen with a quality interpreted, facilitated experience. Some staff knew a few signs, but not enough to communicate well.
• There was not a gender-neutral change room, so ad hoc arrangements had to be made for diapering, changing, rest-times etc.

So all of this to say that AV facilities and programming were not designed with Owen’s particular requirements in mind and several less-than-ideal-but-certainly-good-enough accommodations had to be made. Which of course is fair enough, and makes Lynda’s openness to including Owen all the more fantastic. I will undoubtedly send Owen again. Lynda and I have each identified opportunities for improvements and we will figure them out together for next time.

After Owen’s brutal spring with such a lengthy hospitalization, what a wonderful start to the summer.

Photos of Owen, Sallyanne and AV staff below. (I have photos of him with other campers, but I hesitate to post pictures of children without permission.)

So, in order to rein things in and get moving on something more tangible, I’ll list some ideas of actual activities Owen and his facilitators can embark upon during a typical ‘school day’. These activities would get him out in the community, interacting with others and enjoying the city for all it has to offer. At the same time, his partner would use our communication methods to give Owen opportunities to connect with his surroundings in a more intellectual way. I think he already connects emotionally – but perhaps language will support that too.

(Do we feel more love/fear/happiness/anger if we can say we’re feeling it? Probably not. Probably the opposite. Anyway.)

Ideas:

• Volunteer somewhere. It’s a great way for Owen to be involved in something bigger than himself. I think it’s also good for his helpers – after working with Owen (or any one person) for a while, it’s easy to lose the plot. I’ve seen his helpers get bored, lose initiative, get lazy… I think it’s only natural – so volunteering may give everyone a sense of purpose. A good focus would be animals – so Riverdale Farm, the Humane Society, etc. Owen loves critters of all shapes and sizes.
• Visits to the usual Toronto suspects: ROM, Science Centre, Zoo – all good spots for an occasional visit. (We’ve gone through periods where we go to one a LOT, and it loses its magic…)
• Perform regular chores that have meaning in Owen’s life – clothes shopping, doing laundry, making soup – activities that can give more context to Owen’s everyday experiences
• Nature walks – excellent for him to be out amongst the trees and grass. City air is pretty miserable even for the most hearty of us, and Owen suffers with any kind of extreme temperatures or conditions. Forests offer protection from the wind, the sun, the heat – we’ll need to find wheelchair-accessible paths.
• Swim – great sensory activity. and fun.
• Join a class of some kind. Hard to find other kids during the weekday, but even if it’s with a group of adults or seniors – I don’t think he’d mind. Could be art, pottery, digital photography – anything visual/tactile where he can be part of a larger group. I like the idea of it being NOT specifically for kids.
• Join a weekly homeschooling gathering. Here’s where we find the weekday kids. And often, interesting people.
• See movies. Not something I would usually encourage, but Owen loves them. Especially nature documentaries.

OK. Tapped out of ideas at this late hour. I’ll be thinking out loud for the next few posts, trying to get a handle on what this whole program is supposed to look like.

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.