Dismantling ‘Team Owen’

I remember the first time, years ago, when I saw the video of Team Hoyt. (If you don’t already know: Team Hoyt is an athletic father-son duo – Dick Hoyt carries, rows and cycles his severely disabled adult son, Rick, through grueling triathlons.) It was sent to me by a friend, with a note that said, “I saw this video and thought of you and Owen! How inspiring!”

I hesitated to press play. But I watched. Rather not inspired, I felt irritated, confused, and not a little put out that someone would think of me when she saw this video. I had no idea how to understand her excited note, or interpret what it said about me, or Owen, or her.

At the time, my son was around four years old. Owen was born with multiple severe disabilities (primarily spastic quadriplegia cerebral palsy), which meant he couldn’t walk, sit, crawl, stand, hold up his head or swallow safely. He was also deaf and non-verbal. He was four years old and I was only just beginning to come to terms with his disabilities. I had thought for a precious, short time, that he was just a bit behind and would likely outgrow his lack of function. “I think he’ll be a typical ‘preemie’,” I said to friends, “Slow to develop at first but he’ll catch up!”

Instead, Owen missed developmental milestone after milestone, always looking and behaving like the weirdest baby you’d ever seen. Like most kids with disabilities, he was charted against regular developmental tables. Owen’s results always flat-lined across the paper while the ‘typical child’s’ line would curve mockingly upwards.

Finally, sometime in his third year, he was given an official diagnosis of cerebral palsy, along with a dishearteningly vague prediction that he may or may not ever develop beyond his current state. I had yet to muster the courage to contemplate what might lie ahead.

So, the video arrived at a bad time. It jolted me because, as the images flashed across my computer screen, I sensed that my son was easily as disabled as Rick Hoyt. And that no amount of triathlons or viral videos or inspired email exchanges was ever going to change that.


Medical and therapy teams were encouraging in our pursuit of improvements for Owen. They were always focused on possibilities and potential, looking to maximize and harness Owen’s strengths in order to move him in positive directions. “You never know what they’re capable of,” a therapist said, “It’s always better to try! Don’t close any doors!”

To that end, we explored endless configurations of switch access and devices in order to facilitate choice-making. We tried dozens of wheelchairs, standers and walking frames to aid mobility and appropriate positioning. We experimented with picture symbols, sign-supported English and Blissymbolics to support language development. Like many parents in my position, I became a better expert than the experts and even developed my own programming and tracking sheets, so I could offer reports and progress notes at our frequent team meetings.

I totally embraced it. I loved the busy-ness and productivity and positive reinforcement from the professionals, doing everything I could to give Owen the best possible future. I couldn’t imagine doing any less, and was always trying to figure out ways to do more.

As I continued to immerse Owen and myself in his therapies and treatments, I could finally identify with Dick Hoyt (Go Team Owen!). Or, I should say, with the media image of Dick Hoyt. I was running my own triathlon, carrying and rowing and cycling Owen around with me, showing everyone how anything is possible if you just apply yourself. If you just try hard enough.


I didn’t crash in an obvious way. I didn’t flame out or shrivel up or find myself in a psychiatric ward. Sure, I was getting tired. But that’s not what slowed me down.

Instead, I was gradually awakening to the fact that not one of our interventions, despite our best efforts, was actually helping Owen. Small progress might be noted here and there, but it was inconsistent and hard to repeat. At the park, in the store, even at the dinner table—there was no time or space for rigging up the picture board along with the switch and the buzzer and the mounting apparatus and the photo cards. All of our lessons seemed to be for the lessons’ sake, without practical application. Granted, this is how learning often happens: a skill is developed in an artificial and safe environment, to be brought out into the world when ready. But, we were taking up his entire childhood—years—so he could learn what . .? Apple? Dog?

At the same time I was coming to my own understandings of this futility, Owen experienced a sudden medical catastrophe that landed him in intensive care for many weeks. His implanted medical device, an intrathecal baclofen pump, seemed to be causing extreme disruption to his body. He was unrouseable for over 24 hours, and for the first time in his medically-complex life, I wondered if he was going to die.

I lay beside him in his bed, in the dark, and contemplated some very uncomfortable thoughts. “What if he dies? How will I remember his childhood?” Then, “What if he lives? How will he remember his childhood . . ?” This second thought was more harrowing for me than the first.


I had already begun to withdraw Owen from his therapies by the time he was hospitalized, and the reality of his health status made it a fait accompli. I even withdrew him from school, and organized a youthful, eclectic caregiving team to fulfill my new goals for Owen: varied and meaningful community-based experiences and interactions, at a pace we could all manage.

I made the change just in time; Owen passed away just two years later, at the age of twelve. I am grateful to have few regrets. He had a good life, which included two wonderful years in which we didn’t try to achieve anything, and more importantly, I didn’t try to prove anything. I had dismantled Team Owen.

I was no longer reactive to the Hoyts’ story because I had found my own way to be. “Good for them,” I thought, and I meant it. I thought of them as archetypes, not heroes. I found contentment, deciding for myself that ‘trying hard no matter what’ just wasn’t serving us well anymore. And maybe, it never did.

(This is the article rejected by Abilities for not being empowering or positive enough.)



  1. Wicked!

    What a missed opportunity for the publication.

    Will definitely include a link to this in our e-letter.

    I thought your use of the word ‘prove’ was a really apt one. Because of disability’s negative connotation in society, we’re as parents often put in the position of feeling intense pressure to “prove” that really our child is valuable, really our child can make progress, and then that circles back to proving our worth. If I just try hard enough, if I just do therapy x, y, z, and chart everything and visit all the right specialists, then surely I will change the direction of my child’s life. Rather than starting from the basis of my child is a complete human being — separate from ability. An odd question, but do you think you would have the same views on dismantling team Owen if Owen were alive? Would time have made anything different in how you felt about things? Or do you think you would have continued to feel solid and certain in your decision over years? I just wondered because I know sometimes even now at 18 I question whether I did enough for Ben or whether I should be doing more now.

    • Hi Louise! Thanks for your comments…

      To answer your questions: I can only talk with certainty about how I feel now, but I can guess that my confidence in this position would have ebbed and flowed. I’ll waffle on pretty much anything if you give it a long enough timeline :)

      There are times when I know the decision is right, but I continue to have mixed feelings. Or I recognize the imperfectness of the situation and feel deeply sad about it, despite making the ‘right’ choice. Or I make a decision because it’s the least bad option. Some examples include proceeding with the g-tube procedure without anesthetic, doing a muscle biopsy because it was convenient timing, sending Owen to school on days I just couldn’t manage him… Bigger examples include letting go of control when Owen wasn’t with me, ending my marriage – and opting out of the traditional therapies. None of it sits 100% easy, but I wouldn’t choose differently if faced with any of it again.

      • Thanks for your honesty. I think there’s always a part of us that thinks that others make decisions and never look back, when it’s much more likely that everyone has the mixed feelings you describe and, also, that often we’re choosing the lesser of two evils.

  2. *face palm*

    I can’t believe Abilities Mag… or rather, I can. They are so full of goopysoup. It would have been thrilling to see you countering all the normal shmaltz they print though.

    Onward – try HuffPo! Brain Child. Or what about the NY Times? I really think you should try and connect with a MUCH broader audience.

  3. THANK YOU for telling the truth. Your truth. We all have our own experiences but rarely do I read the truth from other parents of disabled kids. Mostly, as you experienced, the gatekeepers of media try to keep us all pushing the message that our kids will “get better if we only try harder.”
    It took me years to let go of the pervasive message that we just had not found the right therapy – or that I as her mother was not practicing the right therapy enough. And then when we did, all would be ok. But those messages took up alot of our lives and,in the end, didn’t really change the outcomes.
    When my daughter’s spine began to curve, I asked the doctor what could I do differently? Change her seating? Do more exercises? The wise doctor looked at me and said: “The cerebral palsy always wins.”
    Why did I have to wait until she was 12 to hear that from a professional? Or had someone said it earlier but I was not ready to hear it?
    My daughter is now 19 and making her own decisions about where to put her energy (and her body). And like all parents of young adults, I rarely agree with her. But that is what this age is about – separating from each other.
    I wish that I had spent more time having fun and less time worrying about pleasing the therapists. That is the message I try to pass onto parents of young disabled children. Thank you for giving us all your wisdom and your insights.

    • Thank you for your comments Corbett! I like what you said about the gatekeepers of media… My partner mentioned a documentary he saw on a recent flight – the one about the marketing engine behind breast cancer fundraising (the name escapes me). It highlights how it’s just not ‘on message’ to discuss the fact that people do die of the disease and many are, in fact, incurable. But worse than that, the marketing makes those ‘incurables’ feel like they didn’t work hard enough. Parallels here, I think.

    • I totally agree about spending more time having fun then in therapy. Especially having fun time with all the family, I found that was so rare in our circumstances because one was always busy driving to and from therapy and the other was busy trying to cope with the sibling(s).

  4. I can’t imagine how hard or easy some of the decisions you made for Owen were. I think of my mother’s own experiences and what a kind, decisive and straight shooter she is. If something didn’t jive with her, she just said it, without a second thought. My brother did the stander thing, walker and big macs. But my mom said no to the computer, the vail bed and therapy once a week. All his experiences were engrained in my life and childhood, school, weekend activities, wonderful nurses, friends, church and community. She would’ve loved where you were coming from with dismantling the ‘team Owen.’

    • Ah, that explains a lot about you Marjorie! “Kind, decisive, straight shooter.” Sounds familiar :) xo

  5. Abilities mag has trouble with the uncomfortable realities of life in the land of disability. You, my dear, smack of reality!

  6. Abilities is the more broadly oriented equivalent of New Mobility in the USA. Both magazines present and depict a reality that is nothing more than a pipe dream for the vast majority of people with a disability. Thus the dismantling of team Owen is a direct threat to the images and unrealistic ideals portrayed in Abilities. The fact you opted out, lived life, and enjoyed Owen as is ignores the gritty reality Abilities is ill equipped to discuss. Do not get me wrong. There is a place for the rhetoric Abilities illustrates. You are far too grounded to buy into the myth portrayed in Abilities. Take the rejection as a compliment. And more to the point, your essay was great.

  7. The breast cancer documentary is called “Pink Ribbons, Inc.” and came out in late 2011. As Jennifer says above, it exposes how the “fundraising engine” deliberately suppresses certain truths about breast cancer from entering the public discourse, because the truth, of course, isn’t all that great: we actually don’t know how to ‘cure’ breast cancer, and it’s unclear whether any of the monies raised are moving the needle in that direction at all. The film interviews stage 4 breast cancer patients saying: “Not only will we die from this, but the public now thinks we didn’t work hard enough to beat breast cancer!” (paraphrasing)

    I think we owe it to ourselves, in every sphere of life, to not only tolerate but actually encourage ‘dissenting’ voices. Nowhere is this more obvious right now than in American politics, where partisanship has polarized public discourse in such a shameful way. For a magazine like Abilities, “to inspire” can’t be the only mandate. “To educate” and “to present the truth” should be just as important, and that means sharing voices and stories that are different.

  8. Four years along in my journey with my beautiful daughter who has Ds and TBI, I have begun to question everything about her “therapies” and “school”. I ask myself the same questions you did, and the answers come back the same as yours. It has been eating away at me… what should I really be doing for her, for her happiness and her sense of peace in this life, and I find myself moving away from the pressure to “teach” her, to make her socially acceptable and to push her toward an impossible independence.

    Your essay on this subject is enlightening and inspiring to me, and surely to others whose eyes are beginning to open concerning deep disabilities. It means a lot to me to know that someone as bright, driven, and loving as you feels like I do. It gives me permission to pursue a path for my daughter that is about celebrating her, not about changing her. Thank you.

    • Hi there Unknown! Thank you for visiting, reading, commenting… (I poked around your blog just now and really laughed at your latest post!)

      It’s like the big elephant in the room, isn’t it? We all know many of our assigned goals are impossible to achieve. But the big lie of hope keeps demanding that we push on. And of course we’re not encouraged to say ‘wait a minute, what the h*ll for anyway?’

      Looking forward to following your blog!

  9. A link to your article was posted to a Disabled Womens Face Book Group I belong to. Please know that this is exactly the type of thing we perfer to read about disability.

  10. There is a newly launched literary magazine for and about parents with a bit of an edge. stealingtimemag.com

    “Stealing Time is a quarterly literary magazine about the heart of parenting. We explore the real stories of parents through fiction, essay, poetry, book reviews, and other pieces that are sad, hopeful, ebullient, resigned, reverent, wry, surprising, gut-busting, or just plain strange. ”

    The two women who publish it twinkle in the light with national literary dangling all over them. I know them and have clinked my teeth on the shiny shinies and they are diamond and gold. Genuine.

    “Often we became disenchanted with the perceived need to provoke and shock and appeal to shallowness. There was a headline that came into Sarah’s inbox when we were working on this web site. “Why I love my toddler’s leash.” This proved our concept.

    And so we will tell you Our Mission: To provide a venue for quality literary content about parenting: no guilt, no simple solutions, no mommy wars.”

    And no one to please. Not even a demographic market public.

    Your story is exceptionally well positioned, honest, and memorable. I suggest you consider this piece too good to feed to stereotype, and deserving a real home, where it will root and grow. Please consider contacting Sarah and Kristi.

    How sad for Abilties readers that they are being fattened on nutritionless reads.

    And thank you for writing the story of your and Owen’s reminder.

    • Hello Teresa,

      Such encouraging words! Thank you. These topics I write about seem to resonate with so many people, I forget that these notions and perspectives are not what mainstream medicine and media want to acknowledge or write about. It is indeed sad, because I suspect if they stopped spinning their own mythologies everyone would breathe a collective sigh of relief.

      Stealing Time looks magnificent. They organize their issues around themes; I spotted one that might work for this piece and will send it right away.

  11. Thank you so much for writing such a beautiful, insightful memorial to your son. It is one that will resonate in the hearts and minds of parents, relatives, friends, and communities for years to come.

    DO, please, try to find a large mainstream publication to pick up your piece. For while it is an important piece for those with disabled (and yes, I said DISabled, not differently-abled) family members. I focus there on the DIS because that is what truly needs to be looked at, hard. Saying “differently” abled, just supports the myth that oh, they just need to do things a little differently and things will be fine. Well, they won’t be, not always anyway. That doesn’t mean that we love them any less, or that we don’t celebrate their achievements. It means that we, unlike many, accept who they really are and there is not a dang thing wrong with that.

    Of course, it would be great if your piece also found a home such as in “Stealing Time,” but our next door neighbors, the lady at the grocery store, etc., they won’t be reading that publication. Get a list of mainstream publications mainly aimed at women and mothers and see if one of them will pick up your piece before you enshrine it in a publication like “Stealing Time.”

    Please steal yourself for this next comment, please.

    I read your article to a friend of mine, her response: “Well, if she was going to just give up, she should have just had him put down like a sick dog.” She is no longer a friend. I did try to educate her, however, that as parents we give our children the best we can, but we don’t stick a blind child out on the street and wish them good luck. Nor do we educate them on dealing with their blindness and being independent and then expect them not to still have issues related to their lack of sight. You research, try, try, try, but then you have to stop and ask yourself, “Who are you trying for? Them or yourself?” It’s a hard question, and you’ll probably have to ask it many times under many different situations.

    But, love, first and foremost is about acceptance. I accept you for who you are and for what your abilities are. I will try to help you, support you, and aid you in advancing your goals and your life and I will accept whatever limits we discover along the way. Then, when and if the time comes that I am continuing these things only out of my own ego to fix you, I will withdraw and let you lead the way. That can be said about the most severely disabled child and the child whose abilities are off the charts… it’s not about ME, it’s about YOU. Please remind me.

    With love, courage and strength for us all.

    • Hi Beverly,

      Thanks for your encouragement about mainstream publication… It’s a good reminder that not only would ‘regular’ parents benefit from exposure to our lives, but also that many of these issues are universal parenting issues, not just disability issues. I don’t think we alone wrote the book on overachieving/striving/ego-filled parenting :)

      And I appreciate your sharing the reaction of your, um… former friend. Takes all kinds, yes? I will simply wish her well, and hope she doesn’t wait to learn about true compassion and acceptance the hard way – when she will require (as most of us will) others to make decisions on her behalf.

      Thank you for writing…

  12. I read this article over at Mamapedia. I am the parent of a seven year old on the autistic spectrum and I struggle with accepting her disability. I so felt for you when I read the part about seeing milestones just blow by her, and that white knuckle optimism of “sure she’ll be one of the ones who catches up”! Because “early intervention is key” (as they say), I spent the bulk of her early childhood bombarding her with therapy, attention, and special education. The result of three years of this sort of thing was maybe one year of progress.

    I had to start the process of suspending my judgement of her progress – not good or bad, just something that’s all her own. Now on most days I feel like her ASD is more like something we integrate into our family’s particular culture, rather than some heartbreaking riddle that needs to be solved. We do what works for us and try to enjoy our individual lives together.

    Thank you so much for your candid and meaningful article.

    • I love how you describe your process towards acceptance – what a gift to your daughter, and the rest of your family’s quality of life.

      I have recently been exposed to more adults with disabilities and am so struck how many integrate their disabilities as part of their identity – not as some horrible affliction that needs to be exorcised but a part of who they are. I wonder why new parents aren’t encouraged to think this way…? Owen’s disabilities were so severe no one thought there was a ‘fix’ – but we were definitely encouraged to see him as a bundle of possibilities and potential rather than as a fully-realized human.

    • Thanks Louise! The old layout was a bit confusing, even for me… :) Thought it was time to simplify.

  13. My daughter is 51/2. She has Down syndrome, suffered a massive stroke in-utero, and now has the added DX of CP. She developed a catastrophic form of Epilepsy due to the stroke, she had leukemia. She has a feeding tube and well, the list goes on.

    I am a therapy slacker. Self professed. We have equipment that is seldom used. Constraint cast that is seldom on. We go to twice a week, 1/2 hour PT sessions and that is that.

    We need to live. She needs to just be. She has worked so hard to just be alive, that I honestly think she has done enough work.

    Therapists think I am doing her a disservice. Peers wonder why I am not doing more. For us, for her, we are just cherishing the days, knowing all to well how fleeting they are.

    As for Team Hoyt, one of our older daughters showed it to me when I was pregnant with Zoey. Watching it just solidified the fact I could do and would do what ever it took for my daughter.

    In the spring I will be doing a triathlon with Zoey. Not to show that I am super woman, just to do something that I love, with my daughter who loves to be outside. My therapy has been running and staying active. I often wonder if I am running towards or away form something. No matter. I will just keep doing.

    Because she does.

    Thanks for a great post and sharing your journey with Owen with us.

    • Hi Zoey,

      Thanks for sharing! That Hoyt video sure gets around, huh? It’s certainly touching but at the time I watched it, it was kind of loaded. Like the video was somehow accusing me of something. But I can see now that we all find our own ways through. Good luck in the triathlon :)

  14. Your honesty alone is inspirational and something we just don’t encounter often enough. What a shame that your brilliant article was turned down. Thank you for continuing to write about your life with Owen.

  15. I’m not a mother of a disabled child, I’m just a mother. Your stories make me appreciate every struggle I have with my growing and developing child. This article in particular reminds me that joy is so important, even more so than achieving. Thank you for putting life, especially life as a mother, into perspective. And thank you for sharing pictures of Owen. I don’t say this lightly, he is so wonderfully beautiful. I am mesmerized by his photos.

    • Hi Brooke – really glad you posted! My experiences with Owen have deeply informed my parenting of Angus, who is now 12. For better and for worse :)

      The intensity of life with Owen brought parenting struggles into sharp relief, but I think they were universal parenting struggles nonetheless. We all decide and cajole and pressure and worry and dream…

  16. Wow does this hit home for me! My almost 9 year old severely disabled daughter and I have been through the same experience. We were gung ho with therapies both conventional and alternative even trying hyperbarics. I feel I tried my best but at some point I just realized we were doing it for the sake of doing it and saying we were trying. I realize our time together could be limited and I just want her to enjoy life and me to enjoy her and not be running around to unnecessary therapy appointments. I do envy those with the really inspirational stories and applaud them for finding their joy. Our joy is much simpler for however long we have it.

    • “I feel I tried my best but at some point I just realized we were doing it for the sake of doing it and saying we were trying.”

      This captures perfectly how I (and I’m sure many others) often felt! Like a kind of Stockholm Syndrome. I’m encouraged to hear that at your daughter’s young age, you are finding your own way…

  17. As a former physical therapist and health care attorney in the US, I actually found your story very inspiring and validating. Often well meaning practitioners persist in their suggestions because they really do want to help, they believe in what they do, and they feel they are not doing a good job unless they offer all they can. Your story is very important, for what it says about valuing your son’s experience over his “potential for achievement” as well as what it says about making decisions in health care…they really are that grey. It would serve us well if providers would acknowledge how grey they really are. So glad you were able to spend quality time with your son.

  18. As a former physical therapist and health care attorney in the US, I actually found your story very inspiring and validating. Often well meaning practitioners persist in their suggestions because they really do want to help, they believe in what they do, and they feel they are not doing a good job unless they offer all they can. Your story is very important, for what it says about valuing your son’s experience over his “potential for achievement” as well as what it says about making decisions in health care…they really are that grey. It would serve us well if providers would acknowledge how grey they are, and to validate decisions to avoid treatment. So glad you were able to spend quality time with your son.

    • Thanks for your comment Shari. I think many therapists feel they must walk a fine line between supporting the family, being hopeful and being realistic… I imagine it can sometimes feel like a juggling act.

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