I was interviewed on CBC Radio One, Ontario Today with Rita Celli today. I don’t listen to radio all that much and wasn’t familiar with the show – but a friend’s referral to the producer of Fresh Air started a chain of connections that led me to Ontario Today. The format is: interview for about 15 minutes, then call-in for the next half hour or so.
I was worried that I wouldn’t have enough interesting things to say, or that I would be misinterpreted, or that a caller would challenge me on something I said and I would stumble on a response. If you tuned in, you would know that none of that happened. A positive experience all round and I would do it again in a heartbeat. You can download the podcast here.
I cringed only once. It was when the host, as a lead-in, characterized my message in a way I was uncomfortable with–reducing my message to ‘everything is fake and hope is snake oil’. I had a chance to explain myself, to say “Well, not quite…” and explain that I thought the healthcare system required us to engage in fake work and cheerful pretend and wishful thinking. But I felt defensive. I thought, “Oh no! Parents are going to think I’m saying that what they’re doing is useless!”
But in the end, it was the callers, parents and therapists alike, who called to say that they also felt that there was too much work, too much pretend, too much hope that leads us down garden paths going nowhere. I think we could have taken calls all afternoon and chatted away for many more hours–there was no shortage of stories.
I was nervous before the show and made some notes, included below. These were the things that I absolutely wanted to say before the call ended. I think I got most of them in. And I think I now have my next few blog posts planned out . . . !
- I am sharing my story for others to take from it what they will.
- I don’t have specific advice about actions. My own learning was about self-discovery, creating intention, uncovering motivations – asking the hard questions of what really matters. The outcomes will be different for every family.
- There are many heart-warming and inspirational stories in the media, online, other memoirs. Overcoming odds, disabilities. Even miracles. No one I know experiences life this way. Ian Brown’s book “Boy in the Moon” is a good example of an alternate voice. I wanted to do the same – add another perspective.
- The system is a well-oiled machine with many moving parts. Parents with disabled children are, by comparison, naïve and inexperienced. It’s easy to adopt the prevailing perspectives. It’s important to maintain agency and intentional choice.
- Efforts to support a child are certainly an expression of love, but they are not a measure of love. Parents don’t have to prove anything. We all understand the depth of love a parent has for a child.
- No one else is better positioned to make decisions on behalf of your child. Take the responsibility seriously, make decisions with intention.
- Be flexible, agile, become a skeptic.
- My message is not about individual therapies or interventions or specific decisions – it’s about what perspective you bring and the way you regard your child. To honour their humanity, meet them where they are.
Protect childhood.- We are critical of parents who overschedule or over-parent their children. Why doesn’t this apply to disability as well? We are praised for overworking and it is assumed this is required.
- No wonder parents can be distraught when they learn their child is going to have a disability. Not surprising physicians might counsel a family to consider terminating a pregnancy – it is assumed to be a grueling life full of disappointments. I suggest it doesn’t have to be.
- Imagine being on the receiving end of this amount of effort and work. Imagine being a child with no real awareness that there is something wrong with you, and being taken to appointment after appointment, made to work, perform, take off your clothes, pushed through your tears, assessed, monitored, tracked—then experiencing the angst and tears and worry of your parents. I wonder how that must feel.
That last bulleted paragraph is right on. I wish I could heard you live and know that so many people were helped by what you had to say.
Typical that a reporter would oversimplify the whole thing…anyway…excellent points. Dialogues about this must always be very nuanced. There is indeed a place for full on “therapy mode” especially in cases where actual rehabilitation is possible…as was the case with my daughter, post injury. Quite often, there is a particular window of “opportunity” where rehab can be of benefit for the long term. It would have been much easier, for instance, to just accept that she would be g-tube fed forever. But I slogged at it hard for two years…and much struggle for everyone…to get her swallow retrained. It was well worth the effort, for her long term health, comfort and quality of life. Working toward communication can also be a really hard go. Intensive interventions in early childhood can make a HUGE difference in the long term for certain types of disability. The trick is to know…maybe admit?…when things won’t work, can’t work, are just pie in the sky. The devil is in the details, right?
@Elizabeth: if you like you can download the podcast here: http://www.cbc.ca/podcasting/includes/ontariotoday.xml
@Claire: well said! It’s about conscious decision-making, picking your battles, and knowing when enough is enough. I also have a feeding story where I worked hard for years–but in the end I decided to just call it and request a g-tube. Neither of us have regrets (I assume!) because we made our decisions intentionally and in the spirit of advocacy for our children. Everyone’s priorities and outcomes will be and ought to be unique. If we can make decisions with a firm grip on reality and actual possibilities, then we might be less disappointed if things don’t work out as planned, and can change course or persist as needed.
@Claire – just read this through again. You said “Intensive interventions in early childhood can make a HUGE difference in the long term for certain types of disability.” I am sure you’re right and don’t disagree… but would love to talk about this more. This is the kind of pressure that I think can snow a family under. Huge difference for what? For doing what? For fixing what? BTW: This is where the nuanced conversation comes in :)
Jennifer, I am thinking of autism mainly when I say that. It’s different from physical issues that most of us face with our kids. Early intervention can mean the difference between a functioning and non-functioning future for many kids on the spectrum. Sadly, autism services are…let’s just say…patchwork!
Hi Jennifer,
I just wanted to say that listening to you yesterday was a great reminder for those of us who work with children and families to remember to take the time to stop and listen to what you need.
The humanity piece of the work that we (anyone working in developmental services, early intervention, etc.) do is first and foremost about honoring the individual and celebrating life and meaning, however that is presented.
It is not always about ‘fixing’, it is about support and we have to remember that we don’t always know what kind of support a child or a family is going to need, it will be (and should be) different for everyone.
I have ordered your book and I look forward to reading it and sharing it with my team to help us in our work with children and families.
Thank you for sharing your story,
Gillian Jackson
Manager – Children’s Services
Developmental Services of Leeds & Grenville
@Gillian – thanks for your comments. I have heard from clinicians who say that the pressure to ‘achieve’ and improve also comes from the parents… can be a vicious cycle! (Your book is on its way today–would love to hear your experience of it when you’re done.)
Reading this list was so calming. yes. yes and yes.
Each family has to ask themselves what really matters.
HI Jennifer,
I’ve just finished your book. I enjoyed it and gave me much food for thought. I’m glad to see that you have a blog to further explain the fake-work concept as I was torn about this when reading your book. I’m a therapist who works with kids with ASD in the severe range who are often not able to communicate and engage in self-injury. You can imagine how painful it must be to see your child hurt themselves and not know the cause of it so then you try everything and, boy, am I ever elated when my strategies work and so deflated when they don’t… I thought this point was right on:
?We are critical of parents who overschedule or over-parent their children. Why doesn’t this apply to disability as well? We are praised for overworking and it is assumed this is required.
This is so true in the autism world with so much pressure/angst about receiving 40 hrs of therapy per week/ working on speech/communication, sensory diets, self-care, social skills, , etc, etc….
Yes, maybe it is time to learn to accept, include and support families and maybe that can be enough.
Hello Moira – thanks so much for writing! I’m glad you found your way here. The book was deliberately concise – but I have also continued to develop these thoughts as time goes on. I absolutely still agree with my own reflections and comments, but I’m starting to wonder how ready new parents are to hear this message. Is it ever helpful to someone to tell them not to try so hard, especially if they feel they’re close to a solution, or if their entire identity is wrapped up in the efforts…? I guess some will feel relief at this idea, and others will only work harder :) Would love to know what you think.