Ever feel totally overwhelmed communicating with a non-verbal child? Parents Candace and Shawn have been there. In this special topic episode, they share things they’ve learned along their 8-year journey with their son Miller.
This episode has lessons to be learned from for parents of every kind, but especially those that long to improve their communication with children for whom spoken language just isn’t an option.
Their advice can be summed up in 3 aspects:
- Be creative.
- Be flexible.
- Be persistent
Etsy PECS communication systems:
General PECS etsy page: https://www.etsy.com/search?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs+cards&ref=return_to_search&organic_search_click=1&explicit=1&q=pecs+cards
Printable version ($5):
Portable device ($17+):https://www.etsy.com/listing/766745671/aac-portable-device-waterproof?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs&ref=sr_gallery-1-2&organic_search_click=1
"No one thing has been the ideal form of communication for him. So he uses several forms of communication which is intense as a parent."
Madeline Cheney 0:13
Hi, I'm Madeline Cheney and you are listening to Episode 15 of The Rare Life. Today I have a special topic episode from Candace and Shawn. They shared all about their son Miller with Angelman syndrome last week in Episode 13. As we talked about in that episode, their number one challenge with Miller is his non verbal ism. So today they have chosen to share things that they have learned in trying to communicate with him. They sum it up in three aspects: be creative, be flexible, and be persistent. And they have some really great insight. So whether you have a child that is nonverbal, you know a child that is nonverbal, or you're curious about what it is like, join us. Let's dive in.
Welcome back, Candace and Shawn.
Madeline Cheney 1:08
Today for our special topic, we're talking about communicating with a nonverbal child and things that you have learned in your journey with Miller thus far. And so, what kind of tip or advice would you like to give to parents that may be also in that similar situation with a nonverbal child?
So I think and-- so just, you know, as a reminder, Miller's non verbal but he does desperately, like anybody would want to, he loves to communicate with the people around him and connect with them. And so in our journey with having a nonverbal child, we've learned three kind of important aspects of helping your child be as successful in communication as possible. And those three things that we've figured out is to to be creative, to be flexible, and to be persistent. And so when I have struggled with Miller and communication, I think it's because I only wanted to do one thing at a time because I get easily overwhelmed. I work full time. And we have five children. And so it's it's not an uncommon occurrence for me especially, to feel overwhelmed. And so the communication needs of our child are are profound. And it's pretty daunting when you think about in Miller's case, and he has to hear what we're saying verbally. Think about the response he wants to have and then figure out how to keep communicate that. So what a lot of kids with Angelman syndrome do is they use symbolic communication. So basically pictures of an item or a feeling to communicate with those around them and so for Miller, it's almost like he has to translate a foreign language, if he wants to communicate, so he has to hear verbally, auditory information of what we're trying to say. And then he has to think, Okay, what do I want to say? Or what is my response to that? And then how am I going to communicate that? And so for Miller, what has worked is a lot of different things. So, being creative is a lot about trying different things through that communication journey. So with Miller, no one thing has been the ideal form of communication for him. So he uses several forms of communication, which is intense as a parent because you have to know six different languages basically. So one of the ways he communicates is through sign. Motor planning is very hard for children with Angelman syndrome. And so that motor control and his ability to basically tell his hands to do what he wants them to do is hard for him. And so he does sign two words he signs "more", and he signs "all done". And that took us literally years of persistence to help him to do that. And his "more" is not the traditional, you know, to the fingers together sign, it's clapping, but we know very clearly that that means "more". He's adapted it also mean "I'm displeased with the general situation".
So kind of more/different. But he also uses it because it is auditory. He also uses clapping to get our attention if we're not looking at him. He'll clap and then we look at him and then he'll like signal "all done", you know with his hand up and wiggling his hands.
Or he'll point to what he wants or look at what he wants.
Or he'll hand you his cup because it needs you to fill it with water. You know, so he he's also learned that if we're not watching him that the signs are silent, therefore he needs to clap to get our attention. The clapping has become this universal attention getting, want more/ I want different/This movie is horrid. I need something different/ This isn't what I'm thinking about. You know, so it's like, yeah.
Yeah. And so you know, we use signs on a regular basis. But we also use eye gaze. So like all children, he thinks that our food is different than what's on his tray. So he will use eye gaze and kind of body language to get like closer to a plate or reaches his hand out. So he uses body language. And he also will guide our hands to what he wants. So if he's hungry, he will go stand next to his high chair or he'll go to the pantry and try to open the door or he'll do we affectionately call "drive-bys" in the kitchen when he's hungry. So he'll just walk into the kitchen and start looking around on the counters and touching stuff. And he's communicating that he's hungry. So that's, you know, so he signs, he uses his body language, and we also have a dedicated communication device for him. It's a Tobii Dynavox. And what that has is a program called compass. And this is kind of our long term hope for him is that he can use this device for output. So what that looks like is it's a bunch of different symbols and categorized in different folders. And so it's very complex for him to communicate with that because like I was saying earlier, he has to take an auditory information, process what his response wants to be, and then when he uses this device, he has to think of what is the symbol for what I want to say. And then motor planning, he has to figure out how to navigate the screen. And then he has to find the symbol for what he wants. And so it's it's extremely complex for him to communicate using his device, and so we haven't been as successful with that yet. And he is in weekly speech, he gets speech therapy. He has a one-on-one paraeducator at school, and to really try to help him with communication. But the device creates its own set of challenges because they have batteries that sometimes run down if we use it a lot. So there's only I think about seven hours of continual use battery life with the device. And then there are some-- like at meal times, it's really not the best for him to be spilling water on his device or getting food all over the device because then we have to take it out of the case and clean everything. And so that's kind of a challenge and so for those situations, we also have laminated copies of what's in his device that he can use. So like we have laminated words of "more" and "all done" and being at home now, we're working on getting him like a daily schedule that's like laminated. So it's like, Okay, Miller, it's time for--we're going to go ride our bike now. And the symbol for that would be, you know, laminated and we would, you know, put it on like a strip of Velcro. And so there's a lot of creativity involved in communicating with a nonverbal child. And I think that the important thing that parents can do when they're communicating with a nonverbal child is just think outside the box. Not one form of communication is going to work all the time. I think that's overwhelming, I'll honor that, that it is overwhelming. But it's also I think one of my bigger tips for success is to be creative, like, just use what your children's abilities are and strengthen those. Because I would love for him just to use his device to be like, I want water. I don't like pickles. But that's not where we're at yet. And so I have to be creative. And I have to listen to him and I have to critically think about what's going to succeed and what's not. And it can be, you know, challenging, but we know that. So that kind of leads us to the being flexible converstation and I think I, you know, I've kind of already covered a lot of that is just to be flexible, and to have a backup plan because, you know, communication devices they break. I mean, yes, you have a warranty but but it has to go get fixed. So I think you always have to have multiple ways for your child to communicate. And because you can't just depend on one thing. And so yeah, and the other thing too is, is involve your kids, involve the babysitter and involve the grandparent. And there's a lot of good research about modeling. So I'm using his device to say, it's time for dinner. So I'm showing him that that's how I communicate too so it's not just about them--it being this one sided thing, it needs to be in both directions. And I will be honest, I will own that... I'm not always the best about that. But I know that that is something that is helpful for him and it has involved me getting an iPad, and I'm trying to get another copy of the compass app on my iPad so that I can more actively model for him. But the company wants another $200 for the communication app.
Madeline Cheney 12:07
And so our trying to save up for that because his device was $7,000. You know, I mean, it's, you know, and that's part of the challenge with special needs parenting is just everything is so expensive. And so, you know, in those times when you can't afford the more expensive modes of communication, there are things like PECS (Picture Exchange Communication System) and Etsy actually, interestingly will--there's people on there that will create PECS (that symbolic communication that I was talking about). So they're images, they will create custom boards for you or like a custom like ring with the different images on it and so having multiple ways to communicate with your child being flexible, knowing that no one form of communication is ideal or perfect at all times. So having backup plans, having multiple forms of communication with your child for when the device was broken or you know, it's just logistically not possible to. You know, you go camping, you don't have electricity out camping and so flexibility is really important and use the people around you, use the babysitter use, you know, at the grocery store, like make it as much as you can part of everything that you do. And that kind of leads us to the third aspect or third kind of tip that I have (and this I'm gonna own right now is my biggest stumbling block and that's okay. You know, I've tried really hard to give myself grace because I do work full time and I do have five children and now we're homeschooling five children) is to be persistent. So it's hard when you have children with profound communication disabilities and challenges to not get discouraged, to not get weary of another day of modeling, another day of not getting through, it's really hard. But the fruit is there. And I know that it's just finding that time and space to be like, you know what the laundry is just not going to get done today because we need to work on communication. And I think it's definitely something that I struggle with, to make that space and that time consistently for Miller to work on communication. And so just making it part of your life as much as you can, when you can, is I think, really I know is very, very important. And so that persistence that just we're gonna do this today. And even if it's just five minutes here or there, that's going to be enough for today. But I'm not going to get discouraged. And I'm not going to give up. And we're going to keep trying. And it's not just me that gets frustrated. Miller gets frustrated. Like I mentioned earlier, he's very, very active. And so trying to sit down and work on communication can be very frustrating for him as well. So, to help him to develop that tenacity to keep working on communication when it's not going well. I mean, we have off days, we have days where he's really interested in and wanting to communicate and there are other days where he's just more interested in his toys and he doesn't want to sit down with me and he doesn't want to look at his device. And you know, it's it is I can tell it's frustrating for him to try to use his device and it will he'll push it away and knowing when to give them that space is hard to as a parent, and when your child is not receptive to that, you need to be able to give them that space. Like maybe it's a good time for me to work on communication, but he's hungry or he's tired and it's not a good time for him. So, you know, allowing your children to to be human just like you are. And when there are times when he seems more receptive to say, Okay, dinner's gonna be an hour late, or that task isn't going to get done. Because now is a good time for Miller. And yeah, I'm saying I need to work on that. But that's, you know, that's part of being a special needs parent, that you are a parent first and foremost. And even though you want to be in a speech and language therapist, you are not. And so, you know, utilizing them to give you tips and tricks for when you're at home, and to try to facilitate that, but just knowing that ultimately you your responsibility is to love your children and not get too fixated. But but also to find that space and to make it a priority, to keep working to have that persistence and not not grow weary of challenges that come with teaching a nonverbal child to communicate.
It's important that even if he's nonverbal, which is, you know, humans most used form of communication, is that it's not that they don't know what you're saying. So I think it's important for parents, and people that are working with children or people that are nonverbal, is to not limit the input that you're giving them. So it's, you know, just because they're non verbal doesn't mean you don't talk to them, doesn't mean that you don't use beyond basic vocabulary, I mean, you can still tell them what you're doing, ask them to do certain things. And then you do that for them or you show them what you're doing. Because they're they're picking that up. And just like the fact that, like if we say, Let's go eat or get in your highchair, and he's upstairs in his room, and we go get him in this room we're like It's time to eat, let's get in your high chair, he will come straight downstairs and go right to his high chair. But the only reason he knows that is because we haven't limited or expectation of what he understands. Because if we were just he's nonverbal, so why even talk to him and we just go get his hand and take him down there. He doesn't know what we're doing or why we're doing it. Or like you know, we're getting him dressed after a bath or whatever. And Hey, we need to put your diaper, and lay down, he'll immediately lay down. And that's important too with him because I mean, he will be a full grown man someday. So right now sure, we can kind of manhandle him but at some point, you know, he's gonna be 35 year old man that you're not going to be able to, you know, grab and kind of flip down to lay down, like you can a child. So it's important for them to understand that too. So I think it's very important to not limit your expectations. And you just treat it like any other--Like, if you have an infant that, you know, can't talk, but you go to the grocery store with them, you're talking about, Hey, let's get some pasta. What do you want? Let's get some cereal. Like you're talking to them as if they're going to respond when you know they're not going to but that's how, that's how language acquisition happens. And they are--they have language acquisition, it's just all internal. They just can't then communicate back to us in the same way we communicate to them. They do communicate back to us. It's just in a different mode. So that's important too.
And that's one thing I don't know that I mentioned about Angelman syndrome, as far as we can tell, and again, it's difficult with them being nonverbal, but our--Miller's receptive communication, so his ability to listen and hear what we're saying, is not impacted by Angelman. So he can understand what we're saying. But his output is what's--his expressive language is what is a challenge for him. And remembering that, you know, in infancy we hear--our children hear thousands of times the same word before they ever wire that word. And so like Shawn was saying, it's really critical that we speak to our nonverbal children, not in baby talk, not in, you know, to speak to them as if, as if someday they will speak back to us. And so that they can learn those skills and sentence structure. It also helps with literacy, not only just their ability to communicate, but they also we hope for a day when Miller is literate, that he can sit down and read a book. And that is not today. But you know, and it's hard because we don't know how much of written he understands. He has learned his letters so far. He can recognize most of his letters--
And colors and shapes.
Yeah. And that's through persistence of his therapists and him. So he's learning these things. And I think it's just interesting how complex communication is with the nonverbal child.
And, well, it is with all of us. It's just we don't realize, we just don't realize how complicated communication actually is. Because everybody that you know, learns it, and they all learn it the same way just by hearing people speak it, and then all of a sudden, they start trying out words. And then those sounds, people recognize them as words like, Oh, if I keep making this sound, this is what I get. And that's how you learn language. And this just shows you how complicated that is and how much motor planning goes into this little bitty place in your face. You know, there's so much learning, there's so much motor planning that has to go on and that just kind of really highlights that with him being non-verbal.
Madeline Cheney 22:04
Yeah, totally. Are there any last things you'd like to add to your special topic about communication? I love everything you guys have said, it's been great.
I guess I mean, I think the biggest thing with communication with a nonverbal child is to not grow weary to make it a priority, and keep trying. And these very--what feel like these very minute and delicate progresses that your child will make, really intensely celebrate them, not just for them, but also for yourself, because you help them achieve that. And that's huge. It's huge because so much work goes in to communicating with a nonverbal child that when you have those, you know, potentially smaller triumphs really treat them as a triumph. And use that to fuel your persistence with helping them to communicate. Because it's the little things that you really have to celebrate when you have a disabled child because they just--those triumphs might be fewer and farther between but when they happen, wow, they're magical. So just yeah, hang in there. They will learn to communicate with you. And it's it's a real blessing when they do communicate with you and you feel those, those successes. So keep trying.
Madeline Cheney 23:42
Oh, I love that. That's amazing. Thank you so much for sharing your wisdom and your tips. This is great.
Good. I'm glad we could kind of give, I don't know, hopefully a little, a little fruit to some families that are struggling. It is...it's hard. Yeah.
Madeline Cheney 24:01
Well, thank you so much.
Oh, you're welcome.
Madeline Cheney 24:06
Check out the show notes for links to Etsy PEC systems that Candace mentioned as an option for alternative communication. If you want to connect and interact with other parents of rare kiddos, join our Facebook support group called Parents of Children with Rare Conditions. It's great and the more the merrier. Join us next week for episode 16 with Kimball's feeding therapist as she shares practical strategies for helping our selective eaters. See you then.