Image courtesy of Gerd Altman on Pixabay.com
Oh Common Sense, Where Art Thou?
Personally, I lament the demise of common sense in the world these days. Sigh.
The Backstory
For my primary “day job” I work as a contracting speech-language pathologist. It’s really good money. I get to set my own hours and schedule. And, for the most part, I get to choose the clients I support. Recently, the owner of the company has been asking if I can take on a few more clients. She’s done an amazing job finding clients who are within just a couple miles of me so I don’t have to travel as far.
So far, so good.
I written before about a couple of clients I’ve been asked to take over from a Karen SLP (see How Not to Be a Karen SLP Part 8). I’ve been able to repair the relationships in both cases and am working with both families to figure out exactly what it is that I do differently that seems to work so much better for their kids. Both kids have blossomed in their own ways and I’m honored to be a part of their journeys. I really want to be able to define what I do differently so I can teach other SLPs what works and why.
Anyway…both of these clients are AAC (alternative/augmentative communication) users. One uses a dedicated, dynamic display SGD (speech generating device where you tap an icon on the screen and it opens up folders with options; aka “high tech” AAC). It’s a $10,000 device which he’s really started to use to communicate. By that, I mean he’s moved beyond the single word requests and has expanded his ability to use the device to request, comment, describe, and respond – in phrases, sentences, and questions (thank you very much :). We’re still working on having him take the SGD with him from room to room rather than expecting the adult to carry it for him. The other client is learning to use a static display SGD (i.e., the icons on one level always stay the same; device requires users to record their own voice). I tried the tablet-based dynamic display version of the same software with her and she’s just not interested right now. She does best with the physical, haptic feedback of pushing buttons. Cool, kiddo. I’ll meet you where you are, but you’re going to have to travel several feet to the device to ask for help or request what you want. (Quick Update: I re-introduced the tablet based SGD yesterday – just to see – and she showed genuine interest in using it. Yeah!)
Still so far, so good, right?
The Newest Client on My Caseload
Just a couple of weeks ago, I was asked to evaluate a client who was fairly new to us. She’d been receiving PT, OT, & SLP services at a local clinic. She started attending the clinic-based services when she “aged out” of early intervention at 36 months old. But, her seizures suddenly worsened and they were having to cancel a lot of sessions at the clinic. Her mom also wasn’t completely happy with the direction of the therapy services. So, she first sought out PT services then asked to add OT & SLP services with us.
The client is a 3 1/2 year old girl with CP and seizures. She was a full term infant. She was diagnosed with CP and failure to thrive around 12 months of age. She underwent surgery on her eyes at about 18 months. The severe grand mal seizures started around 24 months. Her seizures are moderately controlled, but can be triggered by visual stimuli and/or rapid movement (probably still a result of rapidly changing visual stimuli). She’s mobile and can crawl and scoot on her own. She’s able to pull to kneeling on her own and will push to stand and take a few steps with adult support. She’s non-verbal. She uses a combination of body language, body posturing, eye contact and gaze shifts, vocalizations, and natural gestures like handing items to an adult as her primary means of communication.
Her family speaks Tagalog and English, with the adults in the home primarily speaking Tagalog. The family had chosen not to speak Tagalog to the client, knowing that English is the language of instruction. (The forced monolingualism in special education and speech-language pathology – and AAC specifically – is an issue worthy of its own set of posts.)
When I asked about her daughter’s ability to use the SGD during the eval, her mom said she didn’t think her daughter understood what she was supposed to do with it, that her daughter didn’t understand that she was supposed to look at the (line drawing) icons on the screen to be able to say what she wanted. Her mom said she was ready to give up on the SGD and that she wanted to see if I could teach her daughter to sign instead.
Here’s Where the Lack of Common Sense Comes In
The previous clinic requested and obtained a dedicated SGD for this client. It’s a beautiful piece of machinery – a large tablet-based device with a high pixel display. It probably cost in the neighborhood of $15,000. It weighs about 5 pounds and would be too heavy for most adults to comfortably carry for long, even with a cross body strap. The device really is meant to be mounted on a wheelchair or free-stand stand.
Ok, that’s issue number one. This child is mobile and on the road to becoming ambulatory.
Issue number two — new SGDs can only be requested every 5 years or so for an individual client. There are some exceptions to this rule, but generally, you should think ahead to what your client might need in the next 5 years when you order the device. That can be challenging with young kids because they grow and change so quickly. In this kid’s case, she’s likely to be up walking within the next year or so. Also, think about how fast the technology changes just with your cell phone in one year!
Now, here’s the kicker. Ready for this?
This client’s seizures, triggered by visual stimuli, started at age 2. She started attending clinic-based services where the SGD was ordered for her at the age of 36 months. The clinicians at the clinic were aware of this client’s seizure disorder.
So, what access method did they prescribe and order with the device?
If you guessed eye gaze complete with eye tracker, give yourself a pat on the back!
Seriously, People? Really?
This 3 1/2 year old client is now stuck with a large screen device that is too heavy for her to hold or independently transfer from one environment to another and that was ordered with an access method she can’t use.
All electronic screens have an inherent flicker in them. This is because the pixels refresh every so often to keep the images on the screen stable. If you don’t have seizures triggered by visual stimuli, you probably never notice the refresh rate. But, if you are extremely sensitive to visual stimuli, the flicker in screens can be enough to trigger seizures in some people.
Also, eye gaze is hard to do and extremely tiring. The tiny muscles in our eyes are really not designed to move to look at an icon on a screen and dwell on it until the functions of a device are activated (called dwell time which can be controlled in the settings). Think about how tired your eyes are after a day on the computer and/or reading small text. It can be the best access method for some users who are not able to physically touch a screen even with adaptive equipment. But – especially with kids – it can be really, really hard to teach. It can be next to impossible to teach a mobile or ambulatory kiddo to use this access method. They’re busy and they have other things to do than wait for the dwell time to kick in.
But, for this particular client, the biggest issue is that visual stimuli trigger seizures. The dot on the screen from the eye tracker was triggering seizures. When I tried the SGD myself, I wanted to avoid using the eye tracker. The screen was too bright for me and the eye tracker was a quickly moving, blinking gray dot tracking my eye movements. The dwell time was set to 2 seconds – too long even for me as an adult. All I wanted to do was close my eyes and avoid looking at the screen. I can only imagine how the kid felt when this she was put in front of this thing.
The SGD came with a floor mount. The expectation was that this mobile child would go over to the SGD from wherever she was to access the SGD via eye gaze to select one of 6 nouns on the screen. Like her mom said, it wasn’t working.
So, You’ve Got this $15k SGD Collecting Dust in the Corner. Now What?
First and foremost, I turned off the eye tracker and changed the access method to direct/tap.
I turned the brightness level down on the screen. It was painfully bright.
I took the SGD off the floor mount and put it on the floor next to the client and me. The eye tracker mechanism props up the device at a really good angle for this.
I changed the vocab from the limiting 6 nouns: more; go; stop; all done; help; and no. There’s a reason why these words are acquired early by very young children. They can be used in a lot of situations when you’re just learning to use symbolic language.
I talked with her mom about the possibility of changing the line drawing icons to realia photos if we needed to try that.
Then, I set up activities where I could help the client select “more” or “go” or “all done” to promote functional use of the device. I watched to see which hand she generally reached out with. I paid attention to how she oriented her hand to be able to select the icon she wanted (with her thumb pad at the moment).
And when she reached out to request more bubbles or access to a toy, I lead her to the SGD to tap the appropriate icon. I modeled using the SGD by selecting the same icon when it was my ‘turn.’ To honor her mom’s request to try signs, I modeled the signs for “more” or “help” and used hand-over-hand assist to help the kiddo shape her hands into approximations for the signs. I taught her mom those two signs and told her the great thing about sign is that you can use the same sign in more than one language – if the family wanted to start introducing Tagalog.
What do you know? The kiddo started to show some interest in the SGD. There was no key guard available for the device, so she continued to need physical support to access individual icons. But, she started to try to use it! Her mom immediately asked if she should start putting the SGD on the floor with her daughter. I said, yes, absolutely. That’s where her world is right now and having the SGD next to her would increase the likelihood that the kiddo would use it. I also suggested to her mom that adults model how to use the SGD at every possible opportunity along with saying the word and modeling the sign. That’s how all young kids learn and learn to use language, no matter that it ‘looks’ different for her daughter.
When I arrived at the next session, I saw the kiddo happily pulling clothes out of a basket on the floor with both her mom and the SGD on the floor next to her. Her mom was modeling “more” and labeling the clothes items her daughter was pulling out of the basket. The SGD’s screen was a smudgy mess. (Yeah!! Because that means the kiddo had been trying to access it! 😉 I asked how it had been going and her mom said, “She’s trying.” The kiddo was both trying to sign more and trying to access more on the SGD screen (not at the same time, trying one or the other.) It was enough growth and change that her mom had bought back into the therapy process in general and could now see how her daughter might be able to learn to tell her exactly what she wanted.
My Best Suggestion for SLPs…
I’m really working to figure out how and why what I do with my clients is so different from other SLPs. I’m selfishly working to figure this out to teach other SLPs so I can work less and so I can spend more time thinking and developing better materials and methods. I’m working to figure it out so I can figure out how to teach other SLPs to make better clinical decisions for their clients.
For now, this is what I’ve come up with:
Try walking in your client’s and their family’s shoes. What would you want if you were them? Really look to see where your client is today. See yourself in their position. Really see yourself in their position. Then, really think about what you’d want to be able to do. When you understand that, then you can start thinking about how to best approach the situation for your client and from their point of view.
It’s what I do. Maybe that’s all common sense really is.
As always, thanks for reading!
Outside The Box 