I’ve read a few things lately – articles, blog posts, facebook musings – on how parents are increasingly burning out and deciding that there is such a thing as too much. Too much intervention, training, therapy, structure. While it’s unfortunate for those of us who have experienced it, I am glad for the rising public intolerance of systemic pressure to turn a childhood into permanent boot camp. It’s been a favourite topic of mine for some time.
And yet…
Is it enough to only be thinking about the limits of human endurance? Is stamina the only question on the table? What about the reasons we are pursuing these things in the first place? What are we hoping for, and what is the cost?
It’s a shame to be pushed to the brink for any reason, but I fear the focus on burn out is a red herring – a distraction that prevents us from examining motivations.
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When Owen was young (actually, when *I* was young) I would say, easily without a trace of self-awareness, that everything I was doing was for him, and for his benefit. Regardless of how futile the hopes, how absurd the tasks. Because he needed it, because it was important, because he should have every opportunity…
Who could argue with that? When a mother – especially a mother of a disabled child – says all of these things, not a single person in her sphere would dare challenge her.
I started to ask myself “Why am I doing this?” when Owen was quite little. But it was another few years until I got past the first answer I could think of (“It’s for Owen, of course!”). I was in pursuit of what was referred to in therapy as ‘the microscopic truth’. The irrefutable end point where there is no further argument that can be made. My eventual answer turned out to have little to do with potential (“you never know!”) or progress (“not much but it’s something!”) or Owen’s love of therapy (ha). It mostly boiled down to wanting to be a good mother and not being able to figure out how else to show it.
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Instead of burning out, I chose opting out. I can appreciate this might not be easy to contemplate, for many reasons. My goal is not to convince anyone of anything; rather, I wish to share an alternative to the status quo. The system needs skepticism in order to improve. I gladly take up the task.
Truth. That’s what I thought as I read this.
I’d love to hear more about why we mothers of children with disabilities feel that over-extending therapy and interventions is the only way to show our love?
yes. YES.
and I love how succinctly you can phrase your thoughts.
Excellent post. I remember when I hit the limit. I view everything differently now.
YES! I agree. As the mother of a 28 year old man with Down syndrome ( and a speech therapist) I have long had doubts about the way in which families get caught up in the grip of “intervention”. As a therapist, I had my doubts about the cost/benefit of all the therapy that was expected/usual. As a mother I could see that the most important thing to do was to treat him as I do my other children : love him for who he is and provide gentle encouragement and the occasional bit of a push away from harm.
Now that he is an adult, I am sure that my instincts were right. I look around at the children who ( unlike my son) had intensive intervention ( at G-d know what cost to the child and family) and I don’t see that their lives are any better than my son’s.
What was important was to create and maintain sting links and bonds with the family and community so that he has people in his life who will support him – what ever he is able to do.
Jennifer you’ve written about false strategies for therapy extensively but there are several elements of burn out which have nothing to do with therapy but are perhaps of greater significance. Burn out produced from years of running after the “fix it” conception has to do with realistically assessing ability of everyone involved. Realistic assessment is, in practical terms, unobtainable since you have the “you never know”. This seems to me to be about the caregiver/extreme parent realizing, with time, what THEY are capable of handling and recognizing any stress that intervention overload could be causing their child. The latter is even more complicated in non-verbal, cognitively compromised children.
But what of burn out due to lack of sleep, compounded by 24 hour care of a medically fragile child as well as one who is extremely disabled? Or a single parent to a severely disabled child? My point is that there are many elements that influence debilitation, be it psychological or physical (often both). The degree of support from partner, family and environment is also so significant that it can make the difference between being very stressed an being struck down by despair, exhaustion and so forth. Regardless, I believe opting out (or minimizing intervention) comes at a late stage in the game when you have garnered a great deal of experience, while some children do have significant advances which only further encourage parents to expand the therapeutic repertoire. Confounding elements as I mentioned, can go on independently of treatment load. I think that the psychology of caring for severe or extremely disabled children has a life of its own and is the real issue that needs to be addressed in all its parameters.
Thanks for commenting Eric. Yes, this post did not address the issues you raise. The ‘burn out’ I refer to here is essentially self-imposed and voluntary – you are referring to a far more fundamental crash from things like exhaustion, worry, fatigue, despair – which in my mind are critical mental and physical health concerns as opposed to what I’m talking about, which is a kind of zealous ambitiousness.
I appreciate your mentioning this because it’s a blind spot for me. Certainly I felt all of those things to a point, in certain moments, but not enough to be distressful. Thank you for expanding the dialogue!
Hi — interesting comments Eric and Jennifer. I’ve been reading about compassion fatigue in health professionals and so much of it applies to parents!