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I’ve written before wondering what it must be like to be non-verbal. You can read that post here. It’s gotten quite a bit of traffic since I posted it in July, 2023.
Yesterday was an interesting day clinically. It’s the tale of two kids, one who is becoming more and more verbal as she’s growing and changing and one who is just as bright, inquisitive, funny, but who physically is not able to become more verbal as he grows and changes.
Both of these clients have made me really rethink how alternative/augmentative communication (AAC) and speech-generating devices (SGDs) should be integrated into therapy and, especially, into teaching clients, families, and caregivers how to integrate the client’s voice into their daily routines. My plan is to write about how I do that in the near future.
Because, for both of these clients, their SGDs are really their voices.
The girl is learning to generate fully grammatical statements and questions in both English and Spanish. (As an aside, it’s really, really hard to teach the differences between ser and estar to a kiddo who hasn’t had the opportunity to verbally make those mistakes and get feedback from adults!) She’s learning to put together utterances with direct and indirect objects on the SGD. She’s learning to expand noun and verb phrases by adding one or two modifiers (e.g., “Can I have the big, green block?”) Even though it’s physically hard for her to make all of the consonant sounds of both languages, she’s able to produce the five vowel sounds in Spanish and approximate most of the 18 vowels in English. She’s able to produce the same number of syllables of the target word in most cases. She’s also trying to imitate what adults say or the words on the SGD as she selects them. Also, she’s trying to sing along with familiar songs. In short, she’s trying to verbalize as much as she possibly can right now. She’s tagging along after her older cousins generally holding her own. And, she’s gotten very – shall we say – “spicy” as she’s learned that words have more power than pointing or actions. In short, she’s on her way to becoming a predominantly verbal communicator who may need to use an SGD for more complex utterances or when others don’t understand her.
I’m so proud of her and all of the growth she’s shown over the last 18 months.
I had a break after her session, so I was able to chat with her mom for a bit. My client took off to go pester her older brother – just like a little sister should! Her mom relayed a few things that have happened recently that have made her realize just how much her daughter really does understand. Things like understanding what’s been said in Spanish by performing an action or getting the object that was talked about even when the conversation did not directly involve her (e.g., going and getting the broom because her grandmother mentioned the floor needed to be swept.) It was a good opportunity to remind her mom that I really do think her daughter understands just about everything and that adults should just assume her ears are always “on.” It was a good opportunity to remind her mom that if she wouldn’t say the same thing about her son in his presence, don’t say it about her daughter in her presence. It’s clear that her mom realizes my client is participating in her own life more and more every day.
Again, I’m so proud of how far my client has come and how far her family has come in making sure she’s included in every way possible. I think, for her, that transition is easier to make because this client is becoming more verbal and more vocal with her SGD every day. It’s much easier for others to see just how much she understands.
Contrast this with the boy with the rare genetic disorder I’ve written about before. He’s a little older (just a couple of years), does have more health issues, and has both a tracheostomy and a G-tube. Because he’s medically fragile, he has a full-time nurse and receives homebound school services. He’s able to vocalize around the trach enough to laugh, burp on purpose (which makes him laugh), yell, and make vowels sounds and some CV syllables using the bilabials consonants [m, p, b]. It’s clearly a lot more effort for him to vocalize and verbalize than it is for my other client. But, that doesn’t mean he doesn’t have anything to say. Because, he’s got a great sense of humor. He’s got a fantastic belly laugh. He likes what many other boys his age like – physical humor and bodily function jokes (e.g., burps & farts). He laughed when I teased him about asking Santa for socks and underwear for Christmas this year. When we engage in pretend play activities, he thinks it’s funny for action figures to have “accidents” or do something he’s not supposed to do. He cheats at games and gives himself away by laughing before he does it. I use the Boom Cards I develop to ask him comprehension questions about books we read. He likes to get the answers wrong on purpose before he answers them correctly. How do I know? He giggles to himself before he answers incorrectly. He’s able to use single icons on his SGD to request and comment and with some prompting he can construct full statements and questions. We’re working on accessing the conversational topics and phrases/sentences built into his SGD to make it easier to use more than just a single icon and to use the SGD for more than just requesting. Because of his fine motor deficits (and the way the SGD is currently organized), it can take him a minute to get through the dynamic screens to select the icons he wants. But, he can do it if you are patient. In short, he’s got a lot to say if someone bothers to take the time to interact with him in ways he can interact with you.
A few weeks ago, a social worker was completing her assessment of this client at the same time I was conducting a therapy session with him. The social worker kept asking me things like, “Is he ambulatory?” and “Can he really use that device?” with my client sitting right there in front of both of us. When the social worker asked questions like that, I immediately asked my client, “Hey, can you stand up walk to the door and come right back?” (I do have a goal for follow multi-step directions in the correct sequence, so why not include the client in his own life and work on a goal at the same time?) When the social worker asked if my client could really use his SGD, I asked my client what holiday had just passed (Thanksgiving) and what holiday was coming up next (Christmas). I made sure the SGD was on the Home screen for this so he’d have to navigate several dynamic screens to answer my questions. I then asked him if he wanted socks and underwear for Christmas so he’d laugh and answer “no” by either shaking his head or by using the SGD. I was really, really hoping the social worker would get the hint and stop treating my client like he couldn’t understand what was being said about him. They didn’t get the hint.
Yesterday, his older sister was home from school (winter break). That always makes things a bit more challenging because his sister has internalized what the adults around her do. She really does mean well and she’s just a couple of years older than he is. She really is trying to be a good big sister. She talks to her brother, but she also talks about him like he isn’t sitting right next to her when she talks to other people. She always wants to help him before giving him a chance to do things for himself (like picking him up under the arms yesterday to physically move him rather than giving him a chance to move where she wanted him to.) Fortunately, he’s getting to the point where he’s resisting her and pushing her away from him when he wants space from her. When she’s home, I try to find ways to include her in our activities for a couple of reasons. One, she’s his sister. Two, because her brother is medically fragile, he gets a lot more attention than she does. They’re still at the age where it doesn’t matter that it’s attention he doesn’t want, he gets more attention from adults. She wanted to sit in on the book activity we did. Cool. (No blurting though – I know you know. I want to see what your brother knows.) She was amazed that he was able to answer the Boom Cards questions correctly. She was honestly surprised a couple of times when she said (in the all-knowing big sister way) “Oh, I know what he wants,” and then her brother surprised her with a completely different, entirely reasonable answer to my question than she expected. She seemed surprised that he could play Memory on his own, use his SGD to remind her not to cheat and to ask whose turn it was, and to comment that he really liked the game all independently. She said, “That’s cool. I didn’t know he could do that.” I made sure to include her brother when I replied, “You can do a lot of things on your own, can’t you?”
At one point, my client coughed his trach out. It happens. While his sister offered to put it back in, I asked my client’s nurse to come check it. The nurse wanted to wash it out before putting it back in. The nurse made an off-hand comment about the trach having been blocked with blood lately because the hospital always suctions too deeply. So, I asked my client, “When were you in the hospital?” Both his sister and the nurse said, “Sunday.” Ok. So, I asked my client, “Why were you in the hospital?” Both my client’s sister and his nurse began explaining why my client was in the hospital (coughing, coughing the trach out, grandma watching the kids at the time). But, everything was described as though my client wasn’t sitting right there listening to everything they said. When they finished the explanation, I asked my client, “Are you feeling better now?” He used his SGD to respond yes, but then said he still hurt. I asked him what hurt and he pointed to his upper chest. Given how much he’d been coughing in our session and that he’d just been suctioned at the hospital, I’m sure he could feel it in his chest. When I asked if he was okay though, he nodded his head “yes.”
I realize he is not going to be a verbal communicator. I realize he’s frequently going to need to rely on people he knows to fill in the information he can’t easily communicate to other people. I realize it seems like such a small thing for the adults in his life to change the pronouns they use to help him communicate from “he” “him” and “his” to “you” “your” and “yours”. But, that small change makes such a big difference. Changing the pronouns from the third person to the second person means he is included in the conversation and included as a partner, not only a topic. It gives my client an opening to agree or disagree with what’s been said. Or, to add his own experiences and opinions. After all, he was the one who had to be suction at this hospital this past weekend.
Being non-verbal is not the same thing as not having anything to say. Think about how you would feel if you understood a lot of what’s going on around you yet you didn’t have the physical ability to verbally contribute to the conversation that is about you.
If you are in a situation with a person who is a non-verbal communicator, remember first and foremost they are a person. They have thoughts and feelings just like everyone else. If you wouldn’t want someone to talk about you as if you weren’t there, don’t do it to the person who communicates in a different way. Include the person in the conversation by speaking directly to them. Ask them the questions about their life even if they need someone else to help them answer. Look at them. If they use a communication system like an SGD, give them a chance to answer you on their own. Ask for their opinion, even if you’re not sure how much they understand. In other words, treat the person the way you’d want to be treated.
Because if you don’t, you are making them an outsider in their own life. Can you imaging being an outsider in your own?
As always, thank you for reading. I look forward to your thoughts and comments!
Outside The Box 