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.
What?
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!
Mary
*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.
Speech Adventures 
As a supervising clinician for external graduate school placements, I feel like a significant portion of this role falls on me. It is my job not only to help work with students on writing reports with appropriate academic language that translates from one environment to another professionally, but to then work with them on the way to explain assessment results to parents, non speech professionals, AND the students they are working with. This requires “On the job” training with a mentor…raising a graduate student takes a village! The actual IEP meeting is where they see their role models and mentors demonstrate what is expected. It’s where they can see the facial expressions and tears of parents. Choose your placements well at the university level. Know who you are sending your graduate student to and share common philosophies. Have conversations with all who are mentoring your graduate students. Mentors need to understand that we are a primary influence and it is our responsibility to send new SLPs into the working world as compassionate people who will services the whole child (including their families).
I completely agree Nancy…I wish there were more I could do to help those who have been in the field regain this skill. I was so disheartened recently when I was reading some of the posts on a few of the Facebook SLP pages and witnessing the callousness.
I think that becomng a parent myself, made me more compassionate. As a student you do what you are told, you have no real experience about what it means to be a parent. Maybe some role playing and imagenary parenting is an idea?
Possibly. Do you think there’s a common compassion “spark” that is usually present in someone going in the field?
Very insightful (not incite full) article we all need to hear! There is also the issue of SLPs feeling or seeming holier than thou while working with teachers, paras, OT/PTs, psychologists, etcetera. We are all working toward what is best for our clients. If attitude or jargon are barriers to that, we are not doing our best. Thank you!
Very true. I’ve been guilty of using words I expected teachers to know (fricative for instance) only to be reminded not everyone has that same level of understanding, even if they’re educated. We need to keep in mind the bigger picture – what do we need to do to help that client.
What really stuck out for me being early in the field and later after many years, were the parents that stopped the meeting to tell their story. Granted, they did not do this at the first meeting- it after many years of being in the system- But, for graduate students preparing to meet with parents, bring in parents to tell their story- this gives the students a chance to ask many questions like “what was the best” “what advice can you give me going into IEP meetings” “what was the worst comment ever made at a meeting” and “what do you want me to know about you”. I think parents need to be able to tell their story to the team.
Excellent point. I agree. It helps remind the whole team that it’s a person we’re talking about.
I take this role very, very seriously as a clinician. I give a lot of credit to my graduate education. We had a separate class in counseling (second year); we used the Luterman text. (https://www.amazon.com/Counseling-Persons-Communication-Disorders-Families/dp/1416403698).
(as an aside, one of the best things to happen to my professional writing was realizing that I had many parents who had an eighth grade education [in a foreign language, on top of that!] and I need to write all my reports, for all parents, with them in mind. This makes the translator’s job easier too!)
The best advice I probably got was to notice when parents are shutting down. They may keep nodding, but they’re not taking in any information. At this point, I stop the IEP meeting and ask them to share their questions. (There is always either a question or a misunderstanding.) Even as a middle school SLP, working with parents who have worked through a lot of the initial confusion of diagnosis, it comes up. Probably at least once a meeting!
Our role is to make parents feel that they are being listened to, understood, and valued–when this happens, they know that this is how we treat their children. Amazing collaborations start this way.
I completely 110% agree Summer. I too had a counseling class – I wish it were mandatory. Your statement “Our role is to make parents feel that they are being listened to, understood, and valued–when this happens, they know that this is how we treat their children. Amazing collaborations start this way.” is it in a nutshell. Without that piece, we have no true rapport.
Excellent post, thanks! I see so much of this discussion now in aphasia therapy as the field is moving toward more life-participation goals, involving the client in family in goal-setting, focusing on family training, and empowering the client. It’s a big move away from solely impairment-based treatment with the therapist as “teacher.” I am a firm believer in Audrey Holland’s stance that there are 3 experts in the room – the trained therapist, the person who lives with the disorder, and the family who deals with it. We should always look for what we can all learn from each other, though it’s not always easy as often families come to the SLP looking for the “answer” or for us to “fix” their loved one. Your students may benefit from Dr. Holland’s amazing book that teaches this philosophy through a positive psychology approach: https://www.amazon.com/Counseling-Communication-Disorders-Wellness-Perspective/dp/1597565369/ref=dp_ob_title_bk
Wonderful. Thank you for the link Megan. I will definitely look into it. We are looked to as the professionals – and we should be able to talk with the loved ones and clients in a way they can understand and accept. That’s part of why we’re language specialists. I appreciate your comment.
I agree with all of this and have struggled writing reports that parents will understand (my placements were always in poorer, rural districts so many of the parents were under-educated), teachers will understand (in order to apply the information to the child’s classroom learning), yet be professional enough to garner respect from professionals who do understand the technical terms. I had a counseling course in school (had to get in the Psych department to take it – now it’s in the CommDis dept.) and it was invaluable for learning how to listen – really listen – and weigh what you hear and see. Acknowledging the other person’s feelings and opinions is so important as well. Relating to parents in the meetings was easier for me because of this and by being a parent myself. I wrote my reports for all – there was no time to do a separate one for other professionals – but whenever I HAD to use a technical term I defined or explained it in parentheses after the word. In meetings, I would give summaries of sections, using layperson terms. I would preface the summaries with the explanation that there were some terms in the report that were necessary for other professionals to see but that weren’t necessary when talking about the report in this meeting. Parents really appreciated that.
That’s been my experience too. With a little effort, we can write reports that fill all those needs AND are easier for parents to understand. I always found my parents appreciative of that too.
I am giving you a standing ovation, Mary! I’ve said it before, your students are so lucky to have you! I agree compassion is sorely lacking in so many of the comments on the SLP Facebook pages. I do not even log on anymore. I always try to equate my IEP meetings, or any parent meetings, with how I felt when signing the paperwork to buy our house… I know it sounds weird, but our realtor explained the process, the title officer explained everything clearly as we signed each document- but leaving the office, the terminology swimming in our brains (i.e. escrow, amortization, fees for this and that, grantee-grantor, etc.), we could not explain what just happened, especially using those terms. So, I do not use SLP terminology; and I’m the person asking other team members to explain the acronyms they use, or terms others may not understand. We want to convey to parents, and the rest of the team, what our tests revealed, how it relates to the child’s ability to communicate, and how we (and the rest of the team) can help the child. We are the communication specialists!
Thank you. Your analogy was perfect…and wouldn’t it be nice if the bankers/realtors/title company would make buying a house more understandable. We need to build rapport with not alienate the parents/caregivers of our clients.