(First published in Bloom, March 1 2014)
When my son was very young, I was an enthusiastic participant in what I now think of as the ‘rehab machinery’ of childhood disability. Owen had multiple severe disabilities, making him eligible for a host of supportive and therapeutic services. We tried them all, with very few of them showing discernible long term benefit to Owen.
While each had its own goals and measurements for success, the real benefit of the therapies was the time we spent together – with Owen on my lap we would clap and sing and engage with pictures and toys and containers of beans. ‘Therapy’ was a state of mind, a way of being a parent – while we rarely achieved any of the stated goals of these therapies, sometimes the activities were actually enjoyable.
I have written and spoken often of how a therapeutic life can rob a child of his childhood, steal a parent’s experience of being a parent and create unrealistic expectations of improvement and integration. I believe this is all true – the perpetuation of false hope is insidious and damaging. But that doesn’t mean it always feels that way at the time. Moments can be pleasant, comforting and connecting. And in the cocoon of the pediatric rehab community, a therapy-focused life is the norm. Everyone around the child and family is invested in this way of being.
There is little in a child’s life, especially for one who is severely disabled and non-verbal, to signal what life is going to be like as an adult.
Owen died three and a half years ago, at the age of twelve. Despite his disabilities, his death was a surprise to all of us. He had been more healthy and content than ever. To this day, we have no official words to describe his death other than ‘unexplained’ and ‘sudden’. So I never got to experience Owen as an adult. Nor did I experience the dread many of us feel as our disabled children age out of childhood.
For any other parent, a child growing up is bittersweet. It’s a time of letting go, of witnessing the fruits of labour either blossom or wither, of hoping that you didn’t say the wrong thing at the wrong time and of marveling that maybe for once you got it right when your adolescent surprises you with something remarkable. I know this feeling – my son Angus will be fourteen years old this summer. However if Owen had lived, I highly doubt I would be relishing his teenage years in the same way.
Before Owen died, I had only gotten the tiniest sense of the looming drop-off – the edge of the cliff that appears when a disabled child turns 21, when school and pediatric services end and the transition to adult services begins. Like an infinity pool that blends into the horizon, the cut-off is invisible unless you squint, even if you know for sure it’s there somewhere.
The hopes and dreams instilled into the parent of the disabled child keeps her buoyed – strategies and lessons and positive thinking and, most important, belief in possibility can make the work less daunting, can even feel fun.
“Let’s cross that bridge when we get there” is the frequent response to the multitude of what-ifs a parent asks.
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Sometimes I close my eyes and imagine Owen as a teenager, then a young adult, then a full-fledged adult. I picture him sitting in his wheelchair much the way he used to as a child – smiling, foot jammed into the footrest in a most uncomfortable-looking way, one arm up and waving stiffly for no apparent reason, the other arm flopped at his side or perhaps crooked at the elbow.
Same Owen, only bigger!
Pleasant thoughts, until I realize how difficult it would be now to get him up and down the front stairs. To bathe him and change his clothes. To get in and out of a bus. To move through the snow in his much-larger chair. To get him through the narrow doorway leading into the house. And what about other logistics, such as organizing adult funding, daily activities and programming? What about installing ceiling lifts, ramps, finding a bigger place to live? Hiring caregivers for an adult is very different than for a child – how would this all go?
So much to consider. And I haven’t even worried about the bigger societal issues yet, like access to stores and buildings, social integration, meaningful employment or contribution, personal security and safety. And the grandest worry of all: what happens to Owen after I die?
Some of these challenges are highly personal and require individual remedies or responses. Accommodating an adult with disabilities within a family can be achieved as most things in a family can be achieved: with flexibility, creativity, negotiation, concession and hopefully, love and support. And frankly, for those of us who have children like Owen – someone who has needed immense environmental modification all of his life – these challenges are nothing new.
It’s the other issues that are far more worrying. And it’s only now that I see why.
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I have embarked on a video project in recent months. My general goal is to interview people who have had intense or prolonged encounters with healthcare and find out what they think of their experiences and the decisions they made.
One of my interviewees is Bill Peace, an academic and outspoken disability rights activist. I have written about these conversations already on my blog (Part 1 and Part 2) – Bill has exposed to me a world of disenfranchisement and loneliness I would never have seen or comprehended as the parent of a child with disabilities.
In doing so, he has shown me parts of Owen’s future I couldn’t, or wouldn’t, have anticipated, had I stayed focused on Owen’s disabilities from a rehabilitation perspective.
Bill’s experience of disability out in the world is one that is framed by personal and group identity, and civil rights. His disabilities are fully integrated into his understanding of his body, his equipment, his environment and his persona. He knows where disability fits in his own life and he knows what others see when they look at him. He asserts his rights daily when he is denied access to buildings, opportunities and equitable accommodation. He has learned to fight for his right to be seen as he is and where he is.
Bill and his contemporaries had significant barriers to break through. It’s because of their activism that we have accessibility acts, non-discrimination laws, curb cuts, automatic doors and public ramps. It’s because of their activism that people with disabilities can get jobs and access to services. And it’s because of their activism that when I pushed Owen’s wheelchair up a ramp into the museum I didn’t have to think twice about how we were going to get in.
It’s become clear to me that despite our differences, parents of children with disabilities and adults with disabilities should align themselves in the same direction. The people advocating for disability rights are doing the work that will hopefully serve our children and secure their future safety and comfort – parents should be actively supporting and contributing to their work. At a minimum, we should at least be interested in how society treats adults with disabilities.
The uncomfortable truth is that many of our children will be living out their adulthoods without us. They are going to live in a world that can be hospitable or hostile, and how that pans out is largely up to us. If we spend all of our time focused on therapies and no time shaping their futures, how can we complain about poor conditions?
At the beginning of this post, I called our early experiences of childhood disability ‘rehab machinery’. I think it’s accurate: a process-driven engine that takes a broken input and tries its best to fix and shape and mold it into a better output. As parents, we spend tremendous energy participating in this because we know nothing better, we’re shown nothing different. “So this is how it’s done”, we think. We’re grateful, so we do it. And then we do more.
There are critical pieces missing from this machinery that would serve parents and young adults well. If we are truly interested in preparing young people and their families for adulthood, we should be teaching advocacy skills and disability rights. We should be supporting people to become comfortable with their unconventional identities (parents and children alike). We should learn to recognize and respond to discrimination. We should understand how legislation and politics affect people with disabilities. And we should align with disability rights activists, because we have common interests.
In all of my years in the pediatric rehab setting, I was never once introduced to an adult with disabilities. Only occasionally was I introduced to another parent who was at least a decade or two beyond my current stage (and those introductions were only as personal connections and not intended to become mentoring or advisory relationships).
It’s as though the ‘machine’ wants to shield us from what lies beyond its youthful boundaries, because maybe at some level, it knows the ways in which it’s failing.
You’ve hit the nail on the head, Jennifer. When I was asked to propose topics for a magazine for parents of children with disabilities, I suggested profiling adults with disabilities who could be role models. The publisher wasn’t interested at all – they didn’t want to know. And I recall a long-ago conversation with another Mum – our kids were very young – and I asked her how she imagined the future when her daughter was grown up. “I don’t want to think about that” was her answer. Were we too focussed on the idea of a magical ‘cure’ at that stage? “Was my child my project?” is the question I ask myself? And if my child grows up to be severely disabled despite the therapies, does that mean I have failed? Who wants to travel down that path of questioning?
Jennifer, I still don’t quite understand if you are opposed to rehabilitation…or a better word to me “habilitation”…entirely or if there is some nuance in there. I expect there is. I have always perceived physical therapy to be based on two critical points: to provide comfort and/or to maximize or develop whatever abilities the disabled child has. I can imagine that parents can get caught in a treadmill, but sometimes, the effort is indeed worth it in the end. What say you?
Donna, it seems to me that you are conflating physical therapies with cure. I pursued many therapies for my daughter, never with the idea that they would cure, but rather alleviate some things, ameliorate others. I think we must be careful here about throwing babies out with the bathwater. My child was indeed my “project”…well worth the effort both of us put into targeted areas. I have no regrets for failed attempts either. If you don’t try something, how do you know if it’s any good? Again, I think there is some nuance here that is missing, or that I am missing.
Hey Claire,
Sure, the effort is worth it for those for whom the effort is worth it. But who knows who those children and families will be…? How much is one expected to give up to hopefully win a lottery? ‘Trying things’ is different from obsession or delusion – I’m not sure our ‘habilitation’ system helps parents distinguish between these things.
This problem complex is not unique to disabilities. It permeates all of childhood and parenting. What does a parent sacrifice for the good of the child? How much martyrdom in the name of motherhood do we collectively sanction? How hard does a parent make a child work for potential future gains? The answers to these are societal as well as individual.
I have zero judgement for those who doggedly pursue treatments or therapies, even when there is only a glimmer of hope that it will work or improve conditions. My sole purpose in this work I’ve taken up, primarily through writing, is to offer an alternate perspective. Pediatric rehab only offers one way through but I think there are many others. There’s not enough criticism or doubt. That’s what I’m here for :)
What I see here, possibly, is that we have had two very different experiences surrounding therapeutic interventions when it comes to our kids. Possibly, your proximity to Bloorview had something to do with that? At my end, no one was in any great hurry to guide us, direct us, push us (choose whatever word you like) into any sort of supportive therapy, as it was considered a “waste of time” on someone who was, ostensibly going to die any minute. One nurse commented openly to a therapist (privately hired) that she thought we were being cruel to do anything at all with our kid, and that we should just let her die. Funny how that worked out, now 14 years later!
“What does a parent sacrifice for the good of the child? How much martyrdom in the name of motherhood do we collectively sanction? How hard does a parent make a child work for potential future gains? The answers to these are societal as well as individual.”
This is more a cultural question, it seems to me, with answers that change with time (age) and the times. I certainly feel unspoken opprobrium and disdain, mostly though not entirely from outsiders, for my own level of what you label as martyrdom. Self-sacrifice can, of course, take many forms, and women who are madly “leaning in” to high status corporate work while trying to be adequate mothers are, I suspect, losing development in areas of being (perhaps becoming obsolete) that I value in people.
As to how hard a child works, that is a very individual aspect of parenting, whether the child is well or handicapped. Tiger mother and all… But in terms of societal effort, tax payers and government agencies want bang for their buck. So of course many services are offered with concepts of improvement as an overarching structure, rather than an emphasis on comfort or convenience.
Or political activism. Support is very different in Canada than in the US where I am, but when my daughter was small I spent much time/energy seeking the best therapies/therapists for her particular requirements, and to say it was intense, exhausting, a steep learning curve — these are all understatements. I was not enmeshed in a system; I was picking and choosing, and I chose
therapists for their expertise and talent in their fields. That’s where I wanted their total focus to be: on
their work and their interaction with my kid in the moment. She had/has no diagnosis. She made great strides in some areas and not in others. We can’t predict the future, and depending on many factors, including etiology, the life today of an adult with a particular condition may not provide a good template at all for a newborn with the same diagnosis. A lot can happen in 20-30 years. I agree that desperate and very stressed parents can be susceptible to all kinds of snake oil, but don’t see that painting every therapy black with the same broad brush is an accurate balance. The process of refining what is useful to an individual and his/her family needn’t be so either/or. As for obsession, I have tremendous respect for some very obsessed mothers I know. Some have revolutionized entire school districts, others have revolutionized medical research. Sometimes an extreme situation requires an extreme response.
“when my daughter was small I spent much time/energy seeking the best therapies/therapists for her particular requirements, and to say it was intense, exhausting, a steep learning curve — these are all understatements. I was not enmeshed in a system; I was picking and choosing, and I chose therapists for their expertise and talent in their fields. That’s where I wanted their total focus to be: on their work and their interaction with my kid in the moment.” YES!
Thanks for your continued interest, A and Claire! Some responses:
– What are your thoughts on the point of the article? That perhaps more time should be spent anticipating adulthood, and that pediatric rehab should support this? The comments mostly defend/discuss the hard work a parent does in childhood, so not sure if you have a response to the post?
– I won’t make a for/against argument about the value of rehab generally. It’s a vital support for many families and children. I have never said I’m against its existence. I question its motives, I question whether families really have options and I question whether it’s ethical to pursue an obscure hope at the expense of virtually everything else. If a parent answers yes, it’s worth it, that’s great. Those are not the people for whom my own experience will resonate.
– I respectfully disagree that just because a parent feels empowered and untethered to a particular system that it’s actually true, that they’re not being influenced or shaped by the very system they think they are resisting or using to their advantage. I think/write/study considerably about power imbalance in healthcare – it can be insidious and virtually unrecognizable (especially in peds because everything has a cheerful veneer, and because parents often feel guilt and pressure anyway). This imbalance can show itself in a desire to conform, a desire to please, a desire to reach the goals as set out by the power structure. Healthcare is merely one arena where this is true, and pediatric rehab a small niche within. That’s not to say that great benefit doesn’t come to individuals because of its offerings, and for many (most?) it’s not possible or desirable to remove themselves. I think families who opt in should do so in a skeptical and observant way, as it’s not only their interests being served.
Jennifer, I agree with the general point of the article: we would to well to align ourselves with activists to create a better future for our adult children with disabilities and that sometimes, we don’t take the long view of things, becoming what appears to be overly absorbed with rehab…and we are not encouraged to do so along the way by “the powers that be”. However, the article, IMHO, takes a hard stab at peds. rehab. and Donna’s comment also seemed to be along the same vein. I take exception to that particular lead in to your point, the caveat that you make no judgment on it for or against notwithstanding. I am cautious, however, because you have far more experience with the “culture” of rehab than I do. As I mentioned, there was no influence on my choices for rehab because no machinery existed for me to be part of..and to date, I have not met any parent that pursued rehab or therapies that did not, in actual fact, take the long view of things. Is it not the point of rehab to maximize a child’s abilities to make adulthood easier? If a child can learn to hold objects, swallow, sign, point, signal, or move a limb, does that not improve their experience of adulthood? Are physical therapies that provide comfort and muscle release (for example), something critical to some of our kids, not a direct benefit to adult life? As I am right now going through the reality of transition to adult services for my daughter (and it starts around age 14 if your child attends school), I feel as though it would be more appropriately my role to work toward the more political/social/cultural/architectural issues. I think it’s okay to let the “beginner” (forgive the expression) parents work through the peds system with an eye toward maximizing their kid’s abilities, and let the more experienced parents work to create a better overall picture for adults with disabilities.
Hi Claire,
Please read my response to A, may help shed some light. Our immersion in AAC (augmentative and alternative communication) is largely the intervention I refer to when I comment on ‘pediatric rehab’. Physio was almost nothing to us in terms of our routines. We had a weekly PT appt and a weekly OT appt. Easy-peasy. Not sure how helpful it was but the appointments themselves weren’t a significant burden.
AAC was the dangling carrot of integration, friendship, acceptance, having a job, making life choices, directing his own care… it was presented as Owen’s only hope for a good life. The clinicians’ keenness and desperation were palpable, and fed my own desperation to ‘do the right thing’.
My experiences bring into sharp relief the prevailing attitudes of the institution and its members. Even if a family’s experiences are not as extreme as mine, I think it’s well worth the effort to question what something is for.
I guess one thing I’m saying is that I don’t feel the vast assortment of categories you list as needs,
present or future, are the purview of pediatric physical therapy, per se. PT is already complex and
demanding and multifaceted. But you’re not really talking about pediatric physical therapists, rather a
team of people you encountered (and I avoided) and I’d suggest that instead of revamping that structure,
it could be added to. There’s something in between physical mobility and social mobility. I don’t have a name for it, and it probably applies more directly to the able disabled than the severely disabled. But it’s a different field. It’s not physical therapy and not exactly social work. It’s also not abstract.
You said “I think families who opt in should do so in a skeptical and observant way, as it’s not only their interests being served.” You mean what’s monetized? I actually think there are places, once chosen,
where skepticism is undermining. Why stay engaged with something of which you are skeptical?
I’m afraid I’m a bit lost on your first point…? Forgive me if I get it wrong but I’ll try to respond :)
Physiotherapy was certainly not the only intervention – in fact it was the least of it. Physio was for gross motor and Owen barely had any abilities in this area. It was more experiential, like lying on mats, swinging on swings etc Then there was occupational therapy, which was more intensive. OT was more for fine motor, like holding things, bringing hands to midline, accessing toys, positioning and seating.
The thing I threw myself into most was communication – the dept. at Bloorview was (is?) called Augmentative and Alternative Communication. Use of switches, computers, adaptive devices, picture cards, Bliss symbols, sign language – anything to support communication for the child. Unfortunately all of their training and programs were geared towards hearing children. Owen was Deaf. He couldn’t hear their cheers and coos and ‘good boy’ encouragements, nor could he hear their instructions or understand their directions. It was a years long battle for everyone to figure out we had to adapt the adaptive communication! There is virtually no crossover between the Deaf and severely disabled communities so it was a frustrating time. ASL became our ‘input’ language of choice (this was entirely my own pushing – I became fluent in ASL and there was no support through rehab for this) – but of course Owen couldn’t sign back. So the focus became getting him to push switches etc. to indicate choices. So OT/PT and others became heavily involved to see if they could get him to gesture, push buttons, select a picture – whatever would signal a choice. Now also keep in mind that this now required that Owen understand abstract pictoral language and symbols in addition to the ASL that he was learning. Language acquisition is a complex thing that most children do naturally, because they’re exposed to a native language for years before they start to express. We didn’t have the natural opportunity for Owen so everything was a construct, and kind of forced.
I’m leaving out a lot of details but hopefully you can see that this exercise in developing communication for Owen was all-consuming and took over our lives. In order for it to be remotely successful we were told it had to permeate all aspects of our day. “Children make hundreds of choices every day! You have to give Owen the same opportunity!” I absolutely believe that everyone, deep down, knew this was never going to result in actual ‘success’ but that the only thing to do was try because if we didn’t, no one was doing their jobs properly.
I have outlined these struggles repeatedly on my blog and in my book, so I don’t repeat them every time I write a criticism of our experience. So I can see that if a reader thinks I am talking about a twice-a-week physio session that my reaction would seem over the top.
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Regarding the last point:
“I think families who opt in should do so in a skeptical and observant way, as it’s not only their interests being served.”
I meant that the institution’s interests are being served by encouraging a family to continue down a certain path. They don’t do alternatives, they do what they do. The skepticism should be aimed at the overall system and its intentions. And yes, at the therapies themselves. I remember being offered treatments only to discover they were actively recruiting participants to fill quotas, or to populate a research study. There are other interests being served than just the family’s.
Addendum/frustrated apology: The weird line breaks in my comments aren’t intentional and are
annoying at best and distracting and confusing at worst. Jennifer, as a techie, if you have any suggestion
for me I’m all ears. It drives me crazy and I can’t figure out why it happens.
Are you copying and pasting from Word or somewhere else…?
Well, again, there are the differences between Canada and the US, for one thing. And
then our individual kids, with such specific needs. And instead of being inside any system at all with my daughter, when I saw the structure, mindset and varying caliber
of the employees, I opted immediately to make my own decisions, scary and unsupported though that was. And is. I come from a family of iconoclasts.
I’m always typing straight into the comments box, on a Mac. Only factor I can think of is maybe it has something to do with a relatively slow satellite dish connection, but I’m not sure that makes sense.
So very true. It’s great to see these thoughts from someone else. I suspect there are many of us who think this way, but don’t talk about it. Have to say it gets tiring hearing “She’s doing so well” and “I’m sure she’ll learn how to [walk, talk, feed herself, etc.]”, when really I just want to know who’ll take care of her when I’m dead, in case she doesn’t learn how to do these things.