School. Make-work, fake-fun, baby-sitting. Some nice moments, but probably not what you think. One such moment: he went out for recess with an older boy, and watched while his assigned ‘buddy’ shot a few hoops. Cool, I thought. Owen probably liked that.
I didn’t care for the fake artwork that came home, the fake social constructs, the fake cheeriness of the staff. The thinly-veiled agenda of keeping the staff busy and feeling useful.
I am amused by a concept I have read about lately. The proliferation of ‘fake work‘ in the corporate world. Fake because it creates the illusion of productivity when the activities actually don’t contribute to anything real or meaningful. Even metrics are a red-herring. Arbitrary and random measures that only serve to make us spin our wheels faster and justify our own existences. And our bosses’.
The therapy years were like that. Fake work. Endless stream of appointments filled with pep talks, encouraging observations, research reports, new directions, good intentions. Owen sitting there – bored, over-medicated, under-involved. I would leave with plans, papers, binders. Arrive home and add them to the pile. Then hire someone to look after Owen while I pored over them, prioritizing, logging, scheduling, making follow-up appointments.
My cupboard was full. My cupboard, meaning: the shelves in my bookcase, the slots in my accordion folder, our appointment book, my brain. And the goals! For Breathing-Swallowing-Sitting-Listening-Language Comprehension-Alternative and Augmentative Communication-Socializing-Sleeping-Bowel Movements. A binder for each one.
At every turn I was assigned a herculean task.
Random goals, from memory:
- Lift head
- Match colours
- Initiate activity
- Choose yes
- Choose no
- Choose yes or no
- Choose from 2 options
- Choose from 3 options
- Swallow without choking
- Sleep through the night
- Press the button at the right time
- Press the button to say something
- Press the button to turn on the lights, the fan, the remote control car, the blender…
“Come on Owen! You can do it!”
I want to cringe, cry, yell when I think of my 30-something self. I worked so hard, and yet underneath it all I felt the futility. I would think to myself: Forget it, he will never do it, he hates this shit anyway, just stop. You could pick just one thing of the fifty and do only that for ten years and it will still never be done. It’s all too much, and never enough. Stop before you put all your energy there and leave nothing for yourself. Or Angus. Or Michael. Before it’s too late.
But the system has no room for this. We like our disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! Don’t get me wrong – where we were 50 years ago is unthinkable. But why is it that families with disabled kids, and the kids themselves, are encouraged and rewarded for working harder than everyone else around them? The tasks are one thing – compound them with expectations, grief, lack of sleep, managing schedules, integrating team members, medical emergencies…
I drank the kool-aid for many years before finally, happily, giving it all up. Contrived, monitored, critiqued exercises gave way to joyful, authentic, meaningful experiences.
Are you wondering, Is she really saying this? How could she not want these things for her son?!
Trust me, it’s not that I didn’t. I just decided that the cost was too high. For both of us.
This is exactly what I feel but have never articulated or expressed, and when asked for advice (as I have a sixteen year old with severe disabilities), I am hard put to say these things.
I adore the photos of the two little ones — fantastic!
If I didn’t know better I might refrain from commenting since I could understand the disinclination to be reminded of other children, like Segev, who continue to struggle on and you did not get that opportunity.
The amount of energy you exerted was monumental and I too feel that there is so little to be offered for a supremely compromised child, still I meet with physicians trying to cajole them onto my path in helping my son. Sometimes berating them. Sometimes being wrong. But most certainly Jennifer, you have beat me once again in bringing out elements of experience in the care of such a complicated child, ones only a few under the umbrella of care givers could understand. Claire is certainly one of them.
Still, as a combined physical therapist/father, there is work to be done, simply the goals need to be realistic and then respect for the true needs of a child will be upheld.
n.b. your previous post was very moving and I responded to it, quite poetically if I do say so myself, but the internetz swallowed it whole, never to be seen again. No matter since my closing line, as often is the case, was that I can simply only reiterate what you had (quite succinctly) stated.
I remember watching you in those days – I never realized you were feeling the push to achieve from other sources – it helps me understand more.
Clear and wise. I learned pretty early to let my daughter be the boss, only to discover she
has a dancer’s passion for practice (which she can’t do without me) and that the equipment
that would be helpful has yet to be invented. But she certainly 86’d any of the fakey stuff,
almost from infancy, and I so respect her (and your) insistence on what is genuine.
Hi Jennifer — I meant to let you know I was posting an excerpt from here.
I felt like crying when I looked at the photo of you and Owen and the laminated Toy story characters — which I’m sure were painstaking to create.
It reminds me of so many “make-work” projects I threw myself into with the absolute conviction that this was going to be the “magic bullet” that propelled Ben’s development forward.
What you’re writing about is very important and needs to be heard. Thanks xo
Jennifer I feel so very lucky to have met you and to have much of what I was thinking confirmed by your years of experience. I do have to keep reminding my self that this constant pressure for more and more therapy and fear of not doing enough, is not only unrealistic but also possibly a waste of my time.
Here’s to authentic experiences!
I love those you created for Owen and your family. You inspire me to remain focussed on what is important for my family.
I agree Jen. Quality of life is what truly matters. So that we may look back and remember those smiles and bright eyes of our children and say “he really enjoyed that”. You are an amazing mom I admire you.
I know where you are coming from but for us it was the opposite direction we were getting. After the extent of my son’s brain damage was discovered it was like everyone washed their hands with him because their was no point in intense therapy when they scans showed he would most likely be a spastic quad and not progress. We fought, and paid for, therapy for him because he wanted to do things, he was trying to do things, and he wanted to learn. So far he is doing almost everything we were told he would “never” be able to do and it was only because of intense therapy, they are continuously shocked and tell us “With his damage *this* should be impossible for him to do”. I wish they would spend more time listening to our children instead of thinking they know what is best and what will and will not work, what they can and can not do. It is better to focus on what they can do and what they are trying to do then it is to work on a million things they can’t or don’t want to do and it’s absolutely horrible to stop trying when they think they know it’s futile.
I remember with my oldest son when he was delayed with his walking and absolutely refused to stand up and try I was told “You can’t force a child to do something they are not ready for, wait until he wants to and then try” but when you have a disabled child, for most I find, people are told the exact opposite and they try and try and try to force the child to do things before they are ready, or even when they know it’s impossible, and add in the “encouragement” that if you keep trying, if you keep working, if you only would put more time into it they *will* do it even if they know they are most likely lying.
They wonder why families get stressed and discouraged and I can’t see how when they build up these wonderful thoughts of your child progressing if only you work harder because when you fail you’re left with the thoughts “did I try hard enough? could I have done more?”. Would it not be better to be realistic? I think a lot of parents would rather be told “we can try this and it may help but don’t beat yourself up if it doesn’t”? instead of “Good job, keep working at it, work harder next week and lets see if there is any improvement.” or “Keep this up and he’ll be walking in no time!”
@L – thanks for sharing your experience… I think there are a lot of stories like yours – where children’s ‘limits’ are defined by a diagnosis and parents feel they have to fight against what professionals predict. Regardless of specific details, I think our stories collectively reveal an unfortunate disconnect between parents and institutions or professionals, regarding the development paths of our children.