Episode Transcript
[00:00:00] Hello, Kim here, Trauma informed slp. Of course, as soon as I released that episode or as soon as I recorded anyway, I started seeing other things pop up on my Instagram feed around this spell to communicate debates and things popping up online a lot right now. And I'm not on Facebook very much. I do have an account on there, but honestly I don't even really log in. I just kind of post through other like the meta platform and stuff. I just don't even really get on there much anymore. But apparently there's hot debates happening over there and apparently there are some fellow SLPs out there who are getting like really heated with parents of children who use like spell to communicate another.
[00:00:45] You know, I would call them new variants of facilitated communication. But you know, whether they call it facilitated or not, basically proponents of those sort of things and shout out to the Buckeye SLP on Instagram because I posted a comment on one of her posts and it's a great post and I think she's doing great work out there on this, unpacking a lot of the different stuff on the different sides. But of course after seeing that and after, you know, my comment and stuff, I thought more about it because that's what my brain does, it just sits there and rolls around with things. So my episode was more, the last episode I put out was more geared toward helping professionals to unpack. Like what does it mean to be an advocate? What is ableist, what is not when it comes to these sort of really complex messy situations of like we have, you know, anecdotal evidence from parents and we have scientific evidence from the previous iteration of facility communication and those two things clash and what do we do about it? And like does that make me ableist to actually want testing, etc. Etc. Etc. Right. This is a little caveat to that when it comes to like how we as professionals tend to approach these topics, especially in online, online spaces. But even if you have families like in your school district or maybe at your clinic who use these methods and want you to use them, for example, and you feel unethically, you can't. Right.
[00:02:17] I think it's really, really, really critically important from the trauma informed perspective that we all consider the emotional state of the parents of these non speakers and approaching this with a lot of empathy and compassion versus automatically approaching it with evidence research, science, you know, that that side of the argument for me, whenever I see it online, it, it contains a lot of emotion. There, there's a lot of I, I, you know, especially sort of peering behind the lines and sometimes overtly. It's a lot of stress. It's a lot of usually trauma, especially societal trauma with stigma around non speakers. Trauma from the medical community and the medical system itself when it comes to failure to provide supports. Sometimes pediatricians saying, oh, your kid is basically not even there because they're not a speaker, which is such complete crap. Right? The whole idea that non speakers can't think, it's just absolutely ridiculous. That's why I always have my little, my little mug here. Non speaking does not equal non thinking, which is on my website if you want it. But I made that for myself because it's just something I say so often that it's like I am. I want it, I want it posted everywhere because I'm so tired of that idea.
[00:03:37] But yeah, there's just, there's a lot of chronic stress, there's a lot of trauma, there's a lot of systemic neglect, right. Happening with these families as a unit, as a whole, as a community. There's a lot of neglect. It's unethical, quite frankly, how little support they get when it comes to like mental health. Access to safe community, access to getting to take time off from being the medical caregiver. Like getting time to actually just be a parent caregiver and not medical, medical, medical. Right. Like, there's so much going on here. And also, like, parents need time to just be humans themselves. They need to have their own things and times off. And these kind of parents don't get that. Right? And it's like I can't even imagine the level of stress that they live under and like how hard it is. And then with cost of living increases and a lot of these families, like the parent can't really work because somebody has to be there 247 to care for the child. Like, it's just so much systemic issue here, right?
[00:04:34] And so much emotional upheaval. But all of that stress and emotional upheaval is also what makes this, these caregivers susceptible or potentially vulnerable to things like psychological enmeshment, thanks to all the emotional upheaval. Right? And that is why we're really pushing for authorship testing the most. It's just, it doesn't make you a bad person to have all these emotions stirring around and to potentially have them like affecting the interpretation of what is being seen.
[00:05:07] You know, this is why in ethical, in a lot of code of ethics, in a lot of different medical organizations and such, it's unethical for professionals to treat their family members because we know that when somebody is really emotionally connected to somebody else, you know, it'll bias the person's interpretation of what they're seeing. It might bias them to miss something or not. Right. And there's this disconnect between our emotional processing and our, and our emotional memories and then our conscious processing. And just because you're psychologically aware that that risk is there, it doesn' prevent the risk from occurring. Right. Which is why it's unethical to treat like for doctors and stuff. They shouldn't treat their family members. Right. They should go to family members, need to go to somebody else. And I think that's where we're coming at it from professionals. Right.
[00:05:51] But we do have to remember that. I mean, I can only imagine the level of hope and joy it is to see a child who has not really communicated with you or used expressive language before suddenly actually using expressive language to communicate and connect with their parent.
[00:06:14] I don't know.
[00:06:16] That must be such a life altering moment. Right?
[00:06:21] And I don't know what it's like to be a parent, admittedly at all. But I do know that if you have that level of hope.
[00:06:31] I have had experience essentially with a loss of hope, right. With the having to grieve, the complex grief that comes really with.
[00:06:39] Here's what I think my life here is. Here is what I think the situation is.
[00:06:43] Here's what's so joyful and hopeful about this. And then having that ripped away and having to like grieve through that and having to admit I was wrong about things. And it, that emotional process, you can't even explain how much it sucks. It sucks with a capital uck. It's horrible. Right?
[00:07:04] And like at this point in my life, I've had lots of mental health, like treatment and therapy and all this stuff. And I have like a system in place of like, oh, here's some more grief, I gotta go back to my counselor and stuff. But if somebody hasn't had that, or like me in my 20s, if I hadn't, you know, if I had had somebody rip away my hope for a better future when I was in more of like a crisis state, like, it can really put a person at a really major risk of mental health crisis. And also just loss of identity, loss of so many things, so, so going right after the progress and dismissing what they think they're seeing really is not just invalidating. I mean, you're crushing, you're potentially crushing someone's hope and you're trying to go up against the strength of hope to just keep Someone going when they're like, working way past their energy capacity. Right.
[00:07:57] And so let's ideally not do that. Okay. Let's not push from that direction of completely invalidating it. Right.
[00:08:06] And that, you know, like, the situation's complex and like, taking away one communication method. Method doesn't mean they will never have access to communication.
[00:08:16] Right. But it does mean that it might feel like you're going back to the drawing board. It might feel like you never achieve that level again. Right. You, once again, you have that whole issue around the hopes and all of that and the grief that can come from that and also, like, motivation to communicate. We have to tackle that when we're dealing with independent communication as some, some. Some folks just don't really want to talk that much, and that's okay. But that can also be hard to deal with. Right.
[00:08:46] And I, I think it's important to emphasize, like, authorship testing, there's a lot of pushback against that in the sense of, like, it'll be traumatic because they're being questioned, like, as if they don't know what they're talking about. But honestly, authorship testing is really nothing more than, like, what kids at school experience all the time when it comes to like, hey, what color is that? Or hey, what did you have for lunch? Hey. You know, like, new staff walks in and they're like, hey, what'd you do at recess? Like, it should be basically like that. It's just that you're blinding the actual communication partners. Right. The idea is just to have multiple partners in there.
[00:09:23] And I think if the non speakers, if that is distressing, if that level of questioning is very distrusting to a non speaker. I think maybe we need to work on some regulation, you know, especially if they are able to communicate at this higher level. Like, we should give them access to mental health. They should have access to counselors. They should have access to, like, somebody to help them calm when people do question them. Right. And like, maybe help teach them more about, like, societal stigma and how that's going to be. You're going to. Unfortunately, this is part and parcel with unfortunately being a person with disabilities. In this world, being a disabled person means facing a lot of stigma, unfortunately. Right. I hate that, but it's true.
[00:10:03] And, you know, I think if, if maybe we can come at it as we could. You could do the safe authorship testing, you know, in a local clinic or local school with a safe group of people, but also making sure that team has plans ready for, like, interventions. What are the plans if the results end up Being life altering in a really negative way for the family. Then like we want to make sure there's support and there's mental health resources and here's what the plan is. And, and you're not a bad person, right? None of this makes anybody a bad person, okay.
[00:10:45] It makes you human. Like we all have flaws and this is the point of a community is to hopefully catch people with some flaws and hopefully just mitigate potential dangers. Right.
[00:10:56] So I think that's also an important side of it as well is like here's what the alternative actually is. Here's the reality of the alternative. And yes, it takes a little longer and yes, they have to learn language in a similar way that we see speaking kids learn language. Yes. It takes some time, right? Yes.
[00:11:14] Because like speaking kids don't automatically. And like kids who learn ASL from birth, like they don't automatically become like an adult level speaker immediately. Right. There's, there's trial and error with how we formulate our messages and being understood and stuff. Right. So yeah, it's not instantaneous usually. That's not normally what we see. Right. I mean, I guess it makes sense too because even if you're receptively really high, like when I learn like foreign languages, for example, which I'm not fluent in, but being a former opera singer and stuff, I did have to take like French and German and Italian and currently I'm learning some Mandarin. It's not like at a high level by any means. Probably not going to show that off to anyone. But you know, I can get really high receptively and then like have no idea how to formulate a sentence on my own. Like my expressive can really lag behind my receptive. It's just how my brain works, I guess. It's like exceptionally behind my expressive in foreign language and in a foreign language. So like, and, and you know, that can be a possibility. And it's like that's okay. It's a bridge. We can, we can, we can bridge that gap, right?
[00:12:20] Just with additional interactions and a difficult different checks and balances. Right. And like as you're learning to express yourself linguistically, like if I'm learning a language and I'm speaking and I want to practice my expressive language with a speaker, like I want them to correct me, right. Like it's important to be corrected sometimes to be like, o, I thought I was asking for a coffee and it turns out I was talking about something completely different. Or maybe I said something really inappropriate and I didn't know I did that. It's important to be corrected with things. So outlining that that's more of the process and that that might be what the process looks like if the authorship testing turns out not to be like turns out not in favor of the family or not in favor of that method. Right.
[00:13:04] And quite frankly, I think authorship testing should just be done on an individual basis anyway. I would say, because I would not be sur if some parents out there who feel like they're doing spell to communicate are actually just using low tech AAC and they just have like a hyperalexic kid who can just spell like crazy and, and they're awesome at it. And it's like great, nothing to fear there. Authorship testing will come out great in favor of continuing to use it, you know, So I think there's just, there's just so many moving parts here. So I just want to discourage people from arguing online because that doesn't usually yield anything.
[00:13:41] And coming at this from a less than compassionate side and coming at it from just oh, these people are being so silly because of this. They're just being ignorant or whatever. It's like, no, no. There are families that are going through a lot and dealing with a lot, a lot, like more than I can imagine.
[00:13:59] And we just need to approach that with compassion and empathy, you know, and just prioritize emotional support and validation for the families, for the non speaker and emphasize that ultimately we are on the side of the non speaker. We just want them to, we just want to ensure that they have autonomy and independent access to robust expressive language so that they can go off and live the best life, the highest quality life, the most independence they can achieve. That's what we want.
[00:14:31] That's just what we want, you know.
[00:14:33] So I just wanted to add that on. That's just my little caveat. So I don't think it's ableist to want to promote authorship testing. But I do think we also as professionals have to come at this from more of a compassionate, empathetic mental health first aid, like validate, normalize kind of approach. Right.
[00:14:56] A more gentle approach than just science. Because listen, like if you're really super upset about something, does it feel good if somebody is like, well, you know, the science says that your upsetness is dumb. So you know, it's like that's never going to feel good. Nobody wants to hear that. So.
[00:15:12] And I think unfortunately professionals don't think that's what they are saying. But sometimes it's very easy to come off that way. Anywh who that's my last little bit on that. Hopefully I might do some more interviews with some people going forward because I think this is a really big discussion when it comes to. Not just with these facilitated communication variants out there, but also honestly when it comes to anytime things crop up where people are maybe encroaching in our scope of practice or people are promoting something that's not evidence based, anytime we're confronted with something like this, I think this is a good example to use to learn how to approach those things in a more humane and empathetic way. You know what I mean? With a bit more compassion forward versus research science forward, you know, sometimes.
[00:16:02] All right, so thanks for listening to that. If that's all you came here for, that's fine. But I have a few little announcements that I just want to throw in here at the end for those of you, if you are interested, you've probably noticed, hopefully you noticed on the show. Notes. I've got a link for free access to my Patreon for three months. I have different tiers on my Patreon but right now the idea is honestly you could go with the cheapest tier and I'm still going to provide all the content for everybody right now because I just want, I want to build, my goal here is to build more of a space where there can be more open access to like mentorship and thoughts on things and troubleshooting and reasoning amongst clinicians and especially reaching out. Personally, I really especially want to reach out to like new SLP graduate students and newer like early career SLPs and early career clinicians and stuff out there because we do tend to kind of work in isolation. A lot of us, A lot of us are like we're the only one on the campus at the school where we work. Or you know, we basically go from like a tight knit cohort of people to like lean on when we're stressed and when we have like questions and stuff. We go from this like high support area of like graduate school or maybe. Well, some of us might not feel like we're that supported, but you know what I mean, you have access to, to people at least, you know, other professionals and other students to bounce ideas off of in grad school. And then you go from there to like maybe working at a skilled nursing facility by yourself where you're the only SLP in the room or maybe you go to a school where you're the only SLP on campus and your supervisor works elsewhere in the district and they're still reachable perhaps, but like, you know, they're off doing their thing. And so I think that can lead to a lot of imposter syndrome and a lot of other, you know, potential burnout. How do I balance life and work? Like, stuff like that. How do I. My school didn't really teach me much about trauma informed care. How. What does it even mean? Am I doing it right? Like, what's going on? Is it okay that I want to take this approach?
[00:18:04] Is there evidence for that approach? Right. Like, places like that, I just want to have people allow for people to have more of a, hopefully a safer space to access that sort of thing. Because, yeah, you can go to Reddit and you can ask a question there, but what you can't get on Reddit or what you can't guarantee is that you're not going to get like snarky comments back. You know, you might get more of the, like, snarky kind of snooty things rather than like safer things. So that's why I'm trying to go for like, low cost. Hopefully I could keep the cost as low as I possibly can, but still have a bit of that privacy barrier of. Of cost to access. Right. So that I'm more in control of. Like, if people get too snarky or too like, if a bully shows up or something, I can just kick him out.
[00:18:51] That's my idea with that. Hey, that's really what I'm hoping to build over there is a little more of a space like that and a little more of an informal space. And maybe we just do some hangouts too, who knows? But you can hop on over there. I'm going to be doing. When you do the comments on like, potential topics right now. I only had one response and I'm going to probably be posting a Patreon only video of that, of my, like, kind of informal rant style, minimally edited response to that, to that submission.
[00:19:20] And some of the topics I think I'll probably pull and like make more formal, like edited, well crafted, well thought, more thought out, perhaps episodes for the podcast going forward. But if you want more of the informal, unmasked, minimally edited rant style stuff, head on over to Patreon. I'm gonna be doing more of those things and maybe also with enough people interested, even if I have like a couple people interested, we could do like some live chats or something, you know.
[00:19:46] But yeah, so hop on over there if you want to check those things out. I do keep the videos. Right now. I'm gonna keep. Most of the videos are free. To the public.
[00:19:56] The. The most Recent rant style 1. I might make it free to public, but, you know, mileage varies. Like, if it. If it ends up getting kind of spammed or whatever, I'll probably put it private for members only kind of a thing. But yeah, check that out. And if you don't want to check that out, that's totally fine. You can still also submit topics for me because that would be lovely just to have a bit more vibe on. Like, what's out. What are people seeing on their algorithms? Right. Because, like, I see my own fips and sometimes I feel compelled to respond to what I see on my fyps, but I also don't know what other people are seeing. Like, what is the common thing you're seeing and that you have big questions about or what sort of experiences you're having that you have questions around, you know, and you just kind of want to know my thoughts on it or whatnot. Okay. All right.
[00:20:43] Thank you so much for listening so far. Drop me a topic suggestion if you have anything on your mind anytime, just go ahead and drop those in there and do go ahead and take advantage of that. Three free three months. I'm trying to post more over there on my Patreon and I do have some chat topics that are sort of like, I just sort of posted as, like, potential things that people can chat about, but with more people on there. Feel free to chat amongst yourselves. That would be great. And we can have our own little space to hang out and I. I don't know how I'm signing this off. I did not plan for that.
[00:21:17] So this is the moment where my brain goes, if you don't have a script to. To sign off, I don't know how to sign off. This is the whole problem with ending phone calls, too. I think I came about it from my mom. My mom has a similar problem.
[00:21:30] H.
[00:21:31] Okay. Anyway, take care of yourselves. Be kind to yourselves, and until next time.
[00:21:39] All right by.
[00:21:46] Sam.
