I know…I know…It has been a while since I’ve posted, and for that I apologize. I’d like to blame it on the new work role, or the move to a (much) larger community, or moving 3 times in 1 month…but in reality, the delay has simply been because I haven’t felt that…nudge. I’ve been trying to force a blog post, which never works for me. Today though, today, I felt the nudge that said “YOU NEED TO WRITE ME NOW!!!” So…guess what?
Have you ever considered what it is like to be the parent or caregiver of a person with a disability? I mean, REALLY thought about it? Not the usual, “man that must suck” thought…but the “oh my god this kid is driving me nuts because all he does is scream” thought…or the “I really just want to hear my kid say ‘mommy’ just once” thought…or the “I’m such a failure, I did something wrong and it’s my fault my kid can’t learn” thought… or the “I really wish my mom was my mom again and not as helpless as a baby who can’t tell me her coffee is cold or that she’s hungry or that she just had an accident and is sitting in a mess” thought (can you tell I’ve recently started working with adults?).
Have you taken the time to consider, even for just a moment, how hard it is to be a parent of a seemingly perfectly capable kid to be told there is a disability of some sort – even though they can walk, and toilet train, and all that? Because let me tell you…it. is. DEVASTATING. Yes, even something as “simple” as being referred for a speech-language evaluation (OMG my kid can’t talk right and is in special ed!) is extremely hard to hear. If you haven’t sat on that side of the table, you may not be able to imagine it, but trust me…it is hard.
Now, I want you to imagine that the professional that’s sitting across the table from you telling you everything that is wrong with your kid or parent is using words that aren’t familiar or sound derogatory. You know, words like “intelligibility” or “aspirate.” Come on, be honest, I know I’m not the only one that has had a parent upset with me that I called their kid stupid (intelligence vs intelligibility). But even if they don’t sound derogatory, if they’re words the parent doesn’t understand (apraxic, disfluent, fronting, gliding, stopping, fricatives, dysarthric, processing delay, pragmatics, labial, penetration, etc.) I’ve just alienated them or worse, made THEM feel stupid.
See…the problem is as speech-language pathologists, as specialists, we deal with this stuff all day long. It starts early on in graduate school. We start learning about disabilities, we do clinic, etc. and then we go out in the world. All of our “normal” development stuff is in undergrad and we forget what “normal” looks like. Because we’re so versed in “not-normal” we tend to get a bit desensitized to it.
We get desensitized to the reality (and it IS a reality) of the heartbreak that occurs when a parent hears there’s something wrong with their kid and because we’re desensitized to it, we begin to be covertly callous about it. Really, it starts off rather innocently. Using words that showcase our superiority and training (you know…words like intelligibility, bilabials, and penetration). Because we’re used to big words and are surrounded by special needs, we tend to forget that the normal every day person isn’t. We forget that we’re dealing with people and we become rigid in our wording and unwilling to change from the “terms of our profession.” We forget that our role in this process is so much more than just “therapist.”
What really prompted the nudge today was a combination of things. First, I’ve been thinking for a couple of weeks now that I really wanted to have my student clinicians do a compassion assignment to sort of drill home that they are working with people first and disorders second. I want them to do this assignment because I want them to be the kind of professional that takes humility and humanity into account far quicker than hubris. To be a true advocate for their client, which means the clients (and their caregivers) needs take precedence over the needs of the SLP. I want my students to connect with their families and be caring individuals who help families, not alienate them.
But the nudge also came because of things I’ve been seeing online.
I started noticing it a few years ago. People seem to have lost compassion (and no, I’m NOT talking politics). When I read the various facebook pages, I see it. Constantly. A lack of tolerance, compassion, and just human decency. Not everyone and not all the time but with increasing frequency. I see SLPs saying things like “so what if they don’t qualify for school therapy, they can always go private practice, that’s what it’s for.” (I find this insulting on SO many levels for everyone). I see SLPs calling other SLPs names. SLPs saying things like parents are choosing to be ignorant and that parents need to “suck it up and deal“. I’m seeing things like:
(in response to a parent request for the SLP to not use a particular misunderstood word in a report.)
I’ve seen this and it makes me angry just typing it here let alone when I read it online. It makes me angry…and sad. It makes me sad for those professionals who have lost their compassion when dealing with families. I’ve also seen the conversation where when a parent complained about a jargon word, and a large number of SLPs declared there’s no way they’d change it because we’re entitled to use our jargon.
We’re entitled to use our jargon?
Parents are entitled to be told things in a way they understand. We as SLPs are supposed to be expert enough to say things in a multitude of ways to ensure they understand (and aren’t offended). I don’t know about anyone else, but I was taught NOT to use jargon in a report and to tailor my reports for the audience (a report going to the MD may be more technical than one going home but under no circumstances were we to use jargon).
There is SOME hope at least (love this voice of reason)
When did we as a profession go from helping to holier-than-thou? Is it because we’ve become desensitized? Is it because of high-case loads and overwork? Is it because we just don’t care anymore? Have we always been this way and I’ve been disillusioned?
More importantly than how we became this way…how do we fix it?
How do we regain our humanity (and humility). How do I impress on my student clinicians the absolute need to talk with parents in ways they can understand – not talking down to them, not talking above them, but talking WITH them? That getting them to understand and work with the SLP is far more important than using “terminology.”
How do I get them to understand that this isn’t just a client we’re talking about – it’s someone’s baby and trust me, there is not a single parent out there who says “Man, I sure pray my kid is screwed up and needs help to learn how to talk.” Not a one.
How do I get them (student clinicians and other SLPs) to recognize that yes, we as a group are intelligent, we have higher education, and we are specialists…but we are not better PEOPLE than these parents are…and that these parents LIVE day in and day out with this disability that we are so graciously going to spend an hour a week with to correct? That there’s a lot we can learn about this disorder from them, not just the other way around.
How do I teach compassion in the face of callousness by other professionals?
I’d love your thoughtful responses, but I’ve left my flame retardant underwear in my other house.
Until then…Adventure on!
*edited to add images to support my thoughts. In talking with other SLPs, it was suggested this may help show the seriousness of the situation. Names have been removed for privacy.