Non-Speaking Autism and First Words: A Letterboard Breakthrough Story

 If you're parenting a non-speaking autistic child and your letterboard journey feels messy and nothing like the polished videos you see on social media — this episode is for you. 

Jennifer Kenny, an Autism Changemakers member and mom to 15-year-old Sarah, joined me just one week after something extraordinary happened: Sarah spelled her very first open-ended sentence. After years of doubt, detours, and messy sessions. 

This is that conversation — raw, honest, and mom-to-mom. 

In this episode we talk about: 

• What happened the day Sarah spelled her first sentence — and what Jennifer felt in that moment
• Why the spelling journey is never a straight line, and why that's completely normal
• How sensory differences impact communication and why there's no one-size-fits-all approach
• Why what your child absorbs matters just as much as what they can spell out loud
• How your co-regulation as a parent directly impacts your child's ability to communicate

If you've ever doubted yourself or wondered if your child would ever find their voice — this episode will remind you to keep going.
 
The path is nonlinear. The voice is there.
 
If this resonated, come find me on Instagram @sara.intonato or learn more about Autism Changemakers at autismchangemakers.com.

Transcript

SPEAKER_00 0:01

Hey everybody, you know that on the Autism Changemakers podcast, I am committed to bringing you unfiltered, unedited information and conversations that will actually help you in your life today, parenting a non-speaker or a non-productive speaker with autism. And I'm very thankful to have a very special guest with me today, Ms. Jennifer Kenny, fellow parent to another beautiful young woman named Sarah, who I believe is an unreliable speaker. She's 15. And I asked Jennifer to come onto the podcast today because just last week, her daughter, after many years of a communication journey, just spelled her first open-ended sentence. And when I heard about it last week and I read what she wrote, it made me so emotional because seeing a non-speaker or a non-proactive speaker find their voice never gets old to me, ever. Especially when it's a family that I've watched grow and evolve into this process for many months now, as Jennifer is a member of Autism Changemakers. And it's been an enormous blessing for me to witness her journey. And I invited her to come on today because she, like me, has seen and felt many of the challenges that parents face on the road to using a letterboard. It is not a straight line. There are a lot of detours, it is messy. It takes not just consistency, but mental endurance and commitment on behalf of the parent in addition to the speller. So we're just having a mom-to-mom conversation today around what her journey looks like because I know you're going to take something away that's going to help you as well. So, Jennifer, I know you're in California and your non-speaker is 15. And I would just love for you to share more about you and what's brought you to this point.

SPEAKER_01 2:09

Yeah, I am um homeschool mom and have been working very closely with Sarah, you know, since she was an infancy, but really watching her closely while we're homeschooling, I think, is what led me to spelling. Um, everybody that has met Sarah has always said, hmm, there's something that we're missing here. And I knew that in my heart that we were missing something and that she was more capable than she was allowing us to see at the time, or we were able to dig out of her at the time. And I knew that we had to pursue this. And I think, you know, the timing was right and the everything kind of aligned to just jump in and try spelling wholeheartedly as part of our communication journey. So that's really kind of what led us here.

SPEAKER_00 3:05

I appreciate that you shared that. I remember when Rocco was two and he had his very first occupational therapy evaluation. This specialist who'd worked with tons of kids with autism said, Well, you know, he's a tough nut to crack. And I was like, Thanks. That doesn't make me feel any better as a parent, knowing I have this really difficult case, even though you see thousands of kids every year, but okay, here we go. And as you're talking about that phase of your journey, trying to put the pieces together to lead to solid communication. I would love to know what do you feel like was your hardest moment that made you feel like, you know, I've got to figure this out for myself. I can't keep depending upon other experts or people outside of my home to do this for me.

SPEAKER_01 3:58

Oh gosh, there's were so many hard moments, and it's hard to pinpoint just one, but a couple of them were definitely when, because I'm very like, let's do it ourselves. We can figure this out. And um, I think that's what really tripped me up at some point that I realized, like, wait, I don't know, I don't have all the answers. Like, I need some professional help, but I need to blend it in a way that works for our family and works for Sarah. And finding that um confidence, I think really changed our journey. And having Sarah see a practitioner and seeing how well she spelled with the practitioner, you know, even with her, you know, support that she needed to get to the letter, seeing her be able to do that with the practitioner and not me was probably the most crushing experience of this journey of like, how come she can do it with other people, but she can't do it with me? And I remember like being stuck for a while with that feeling. And then I was like, nope, we are gonna figure this out. And I'm her mom and we're gonna support her and we are gonna figure this out. And that's really when I, you know, started the learning process and got really involved in like figuring out. And, you know, we kind of took again like a very winding journey, but I started with um communication for education because I was like, I'm homeschooling. This is like a course, this is gonna be a great fit, and that wasn't quite the right fit. And then I did a lot of um work with Autistically Inclined, and you know, that was a great support to me, and then eventually found RPM again, and I think really digging down into that RPM methodology worked for us and gave me a lot of good um skills to work with. And then, you know, again, we took a little winding road and really took all of those pieces of education that I learned from and really kind of made it into a way that works for us. So um very long winding road.

SPEAKER_00 6:10

I love this, and I love that you've talked about how you started this process and you homeschooled specifically before your child became an open speller because I think so many people focus on the output of a spelling journey. How many words can you spell? Can you write the answer to an essay question? Can you tell me what you want to wear this weekend when we go to a family party? But people, in my opinion, don't put enough emphasis on what's being absorbed. And in addition to the motor planning and all of that good stuff, the sensory supports, people forget that in an RPM session and many other modalities as well, S to C included, you're always working from a lesson plan. And when I had RPM provider Madison Imber on last year, she said, What's the worst that happens if you're working from a lesson plan? You learn something interesting. Even if you don't spell a single word, you're learning something interesting. And I really like to pause with that point because I think parents feel a lot of pressure to help their non-speaking or verbally challenged child communicate outwardly. But what they're taking in to me is equally important, and that's the special sauce that I think allows a parent and a child to share an experience. And I'm sure you have something to say on this topic because you homeschool, you know that if you focus solely on results, it's not going to be sustainable or enjoyable for both of you. But if you can put a heavier emphasis on sharing an experience and being curious together and having a sense of wonder as you learn things together, it changes it completely, even if you never spell a word.

SPEAKER_01 8:08

Yeah, definitely. And, you know, I when I first started homeschooling, you know, you want to find the perfect curriculum and all of that. And I never was able to find the perfect curriculum. Um, but I kept coming back to Charlotte Mason and her philosophies. And she's, you know, long gone, but such an instrumental part of the homeschool world. And she had a quote that said, Children are born persons. And, you know, it's our job to just spread a very rich feast in front of them and allow them to assimilate what they can. And, you know, it's that really stuck with me in our homeschool journey. And, you know, seeing Sarah, um, just all of the skills that she wasn't able to show us that she had a lot of splinter skills with her development and very, you know, autism in general is disorganized development, but she had so many strong skills, but then had ones that maybe didn't support her growth and development in the way that she needed. So really kind of tuning into what does she need? What does that support look like for her? And, you know, really digging down and finding what lit her up and what she needed and kind of blending the two together. And I think where our, you know, best moments weren't when we had a perfectly curated lesson and a perfectly staged question. They were really in those moments of discovery and connection and letting her really take the information to be what she needed it to be and let her make those connections. And just, you know, in working with um the practitioner that we work with now, finding those connections that she makes are just like it's amazing to watch. And just her mind is so awe-inspiring that I can't even like really put into words what it all, you know, means to me.

SPEAKER_00 10:13

So I love this so much. It's so incredibly important for anyone listening to realize that when Jennifer was talking about the splinter skills, having really strong development in some areas and really challenging development or just unclear development in other areas is something that is typical for autism. And in a spelling session, in a rapid prompting method session, the way I've learned as a level two provider, going for my level three soon, is that really starting to be with an individual and be curious around their alternative sensory development is where the magic is, the magic that goes into learning and absorbing information, and also the magic that goes into communicating, because no individuals are going to be the same. So you're dealing with auditory, visual, tactile, and kinesthetic areas of development. We also have many other minor channels like olfactory and gustatory development, but those are not the primary ones we're focusing on. And then we're looking at a scale if someone's seeking more development in any of these areas, less development in another, or not development, but stimulation in another. So you could have somebody who has beautiful, fine motor skills and loves to draw and type, and you would think would do well with something like an AAC device, but doesn't because they struggle with auditory stimulation and they don't like the noises that come from an AAC device. So even though, yes, they can type, it's not easy for them in other ways. So I'm sharing this before we move forward because this alternative sensory development profile is normal and there is no one answer to figuring it out. You simply have to be with your child and be curious about how they operate in all of these different areas. And if you're a parent and you have a letterboard at home and you've been holding up the letterboard trying to work with your child and it's not going well, take a breath because this is normal. But also know that it's probably a combination of these sensory profiles that needs a little bit more awareness as you work with your child. So I just wanted to put that there. And now I want to go back to your story, Jennifer, because I know just last week you were with Sarah when she spelled her first open-ended sentence at 15. And that was the first time you got to hear her voice in a sentence at 15. So can you tell us what she shared with you?

SPEAKER_01 12:57

I can, and hopefully I can get through it without crying. Cry if you want, yeah. Like uh so amazing. So she was spelling um with Lindsay Um Goodrich, who is an amazing practitioner that we work with. And you know, it's just another regular Monday, and I was kind of watching what they were doing, and Sarah was getting loud because that's how she really puts power into getting her words out and her letters um out or getting her body to the letters. And um Lindsay was working with her, and Sarah spelled, I'm starting to tell myself that I can be in charge of my own speech. And, you know, they were working through that, and they were talking about loops and whatnot. And Sarah, you know, we Lindsay asked her about her voice, and she said, you know, my voice keeps me having people request that my voice be quiet. And a lot of times I really desire them or my voice to silence only so no one thinks that's all there is to my mind. And I'm just like, mic drop, boom, there it is. So um you know, it it's just amazing to like watch her grow and have these profound thoughts that I knew were in there the whole time. I just you know, we she didn't have a way to harness it and release it and show it to the world. And, you know, working on spelling in the way that we have, I think has really allowed her to harness her voice and show us what's within her. Um, you know, and I think I was spelling with her a couple days later, and we were talking about, you know, kind of the journey that she had, and we were talking about purpose and you know, support and communication partners and whatnot. And um we work with another um practitioner who was with us, and you know, Sarah said, you know, at the same time, purpose already lived within me, but Shannon, who is our um communication partner that we work with, pulled out her and Sarah spelled it M F and then A G I C So I was like, oh, she means magic. And then we're like, does she mean magic with that M F in there? Like, where is she going with this? And so we asked her, like, what is M F or A G I C mean? And Sarah spelled out quite godlike stuff. And that moment was just like wow, like everything has come together and harnessing her energy and my energy or this communication partner's energy, it's like just fully synchronized. And unless you see it in action, you can't really describe it. And I want you to stop there for just a second.

SPEAKER_00 16:17

And I want to interrupt you on purpose because I know I could probably talk to you for three days about this. But last Monday Sarah spells that first sentence. Session is over. What's going through your mind as a mom? Oh my gosh. I'm crying already, asking the question.

SPEAKER_01 16:42

I know, I know. I think I've cried so much, like I'm just I yeah, like I just I think I just was in like holy shit, did that just happen? And I like I couldn't like yeah, just the awe of like, oh my gosh, all of our work that we've done so far has like exploded and she's doing it. And um just like the awe and reverence of like, oh my god, she she's doing it, she's doing it. And um, I think just all the you know, emotions and you know, all the feels of all of that hard work and all of those moments of uncertainty and all of those moments of I don't know if we can do this. And uh, you know, all of those moments of doubt really kind of culminated to, oh my gosh, she's doing it and she's doing it in her own way, and she is harnessing her power. And I think that's really what spelling is all about is allowing our kids to harness their power that was always within them and really finding a way for their voice to get out.

SPEAKER_00 18:04

I love that you just spoke about the messy moments, the days you doubted yourself, because I want to normalize for everyone listening that every family has those. You're probably seeing more videos now on social media of people sitting in a chair, really regulated, spelling with their letterboards, answering lengthy answers to questions, and it looks great, right? I keep saying I'm gonna do this, and I am gonna do it very soon. We need to have a social media challenge where we all post our blooper videos of spelling gone wrong, like the letterboard being thrown across the room and breaking the TV, the students standing up and you know dancing in the room because they can't sit still. Um, you know, the sensory supports that are scattered around the table that we need to rely on just in case, you know, the interruptions with other siblings who need something, or the doorbell ringing, you know, or the dog barking, these are all very normal and very real, but people aren't seeing them on social media. So I'm seeing an increasing number of parents feeling like they're doing it wrong when they have a day that's messy, or a day where they doubt themselves, or they wonder, am I the exception here? Is my kid gonna be the kid who doesn't pick it up? I definitely had those moments myself, also because I was the provider. I had to really consciously not allow myself to give into the pressure of like the weightiness of this, I've got to be the one who helps him do this, right? Because I didn't have another provider nearby. And I really had to do my own inner work and keep myself grounded so that I didn't give that story any energy and just kept on doing the thing. But if you're feeling like, oh, hey, we're on a spelling journey and it's messy, yeah, welcome. This is normal. This is normal. So much more normal than the videos of someone sitting in a chair really organized that you're seeing on social media now. It can get to that point. It does get to that point. We've gotten to that point. It took us a while, but it's okay if that's not what your journey looks like. So do you have a moment where you felt like, oh, this is the messiest day we've ever had? They can laugh about now, but probably didn't feel about it now.

SPEAKER_01 20:33

But yeah, there was definitely, oh my gosh, so many moments when you were talking about the bloopers. I'm like, oh yeah, probably the best one was when I dropped the letterboard on my foot and dropped the F bomb, and then Sarah started screaming the F bomb as well. Yeah, we've had definitely had those messy moments of like, oh my gosh, what the heck are we doing here? Um, but you know, I think on the other side of it, and you know, we're still working through it because again, like being coming open and having these first weeks of open spelling isn't like the end, it's just the beginning. And then it's kind of like, oh, well crap, now what do I do? And so we're constantly, I think, staying curious in like, okay, what does this mean? What do we do next? What makes sense? And just really leaning into that curiosity and knowing that this is like a journey like no other. And um, the other day I was talking to somebody about co-regulation, and you know, I always think, oh, you know, this is something I'm really good at. Like I'm working on this, and then, you know, it's like this mythical idea of co-regulation. But I've I told her in the conversation, I said, you know what, co regulation is a verb, like it's something you constantly have to do, and you have to take action with it. And it, you know, I think is. we talk a lot about scaffolding in um the spelling world and special education in general and you know I think this spelling journey is one that's very scaffold step by step you just keep layering on and you just keep going with it and I think you know really leaning into those moments that feel hard it feels hard for a reason because it is it's hard it's hard work for the parents it's hard work for the kids it's you know it's hard work for everybody involved and just like really leaning into that curiosity and I call it the power of yet like we might not be able to do this yet but look at how good she's sitting at the table now or look at you know the these small victories all grow up into you know a moment of like oh my god we're doing it so um yeah what you're just speaking about with co-regulation I think goes back beautifully to what you mentioned at the start of this recording when you said oh gosh she's spelling with the provider one letter at a time but she's not doing it with me and I think something that many parents forget is that when you go see a provider, they're probably pretty emotionally neutral about how long it takes your child to spell, your child's sensory stuff that they have going on, et cetera.

SPEAKER_00 23:26

Whereas a parent is invested in the journey they want their child to have a voice so deeply it also has a significant impact on their life when their child can have a voice and take place or take a part in conversations that they couldn't before. You know so there's a different level of emotional expectancy when the parent is with the speller versus someone who's a provider and I share that too because people forget hi Sarah just joined us for a minute. Sarah we're talking about you and we're so glad we're so so glad that you're here because you're amazing. But I think this is the thing parents have to remember you're doing double the amount of work because not only are you learning how to navigate the spelling part and the sensory part that goes hand in hand with the spelling part, but you're also navigating your own regulation and your own emotions in this process. And to put that aside while spelling with your child takes so much so much more than a provider who is not in a house with you 24 hours a day waking up with your child at three o'clock in the morning wanting to ask them what they need, right? It's just different. So keep going if you're hearing us talk about this and this is resonating with you because I know Rocco's path to open communication took a solid solid 18 months to two years solid and we were consistent with our practice.

SPEAKER_01 25:10

So how long did it take all of you from the time you started working with the letterboard to get to last week yeah I think we've been working with the letterboard probably a good two and a half years and again like we ebbed and flowed like sometimes we were really into it and then sometimes I'm like I need a break for my own personal sanity and you know kind of figuring things out and figuring out what the next logical step on this ever evolving journey was. So I wouldn't say we were super consistent but in the last like year and a half we've been like spelling pretty much every day with her and working with a variety of practitioners. And I think you know it's not just enough to go see a practitioner once a week. It's up to people getting out that letterboard and making the mistakes and trying things even if it's messy because that's where you really learn the most and you know not be so stuck on a standardized way of doing things. Really evolve and take what your child needs because I think for us Sarah needed a lot more regulation support than what some of the modalities that we worked with previously really offered and you know really leaning into finding what worked for her and getting her regulated and getting me regulated really was you know the key to our success.

SPEAKER_00 26:54

That was one of my favorite things when I did my level one RPM training was Soma reminding everybody that anyone can learn and anyone can communicate if they are supported in the ways that they need. And I loved how on our first day the first video she showed us was her working with a student who was having an aggressive behavior. And she really reminded us in that moment everyone can learn including people who are really struggling in that moment. And it made me feel so included because when your child struggles whether it's in really intense sensory seeking or dysregulation or aggression so often you can feel like the outlier even within the autism community like oh this method of spelling is great if your child doesn't have behaviors or you know can sit in a chair well my kid can't sit in a chair and my kid's having behaviors so I guess it's not for me. And that was something I really loved about the RPM approach was that nobody was cast aside. It was just a question of hmm what might I need to change to support this student and it reminded me so much of when I was a new yoga teacher brand new and I was studying with David Swenson I'm an Ashtangi and David reminded us he said you're only a good teacher if you can teach whomever comes through your door are they in a wheelchair can you teach them you know are you able to present the information in a way they can absorb it that's what makes you a good teacher and when I did my training with Soma it felt like coming full circle because she was saying the same exact thing in a different way you know we were looking at sensory supports we were looking at you know sensory averse tendencies sensory seeking tendencies and it was never a question if an individual could learn or not. It was just a question of finding the right mix for them. And it made me feel so welcome and so at home and I don't think I realized how much I needed to feel welcomed by a methodology or by a community because it gets very lonely even now in the modern world even with the internet it gets very lonely and I was so grateful to feel welcomed for Rocco to feel welcomed for everyone to have faith in us. I still while I was the provider I still work with my mentors to help me be a better provider along the way and I always have I knew I couldn't do it alone. And just to be surrounded by people who believed in him who believed in me I would send them a video of us doing a lesson together. It would often be messy and I would expect them to sort of not scold us but tell me all the things I was doing wrong. And instead they would focus on all the things we were doing really well and then say oh and if you change this that the other thing it'll be easier for him or try this or you know shift into that and I thought oh wow there's something very healing for me on this journey of us finding our way together that I didn't actually know that I needed at all but I did. So I was wondering what you learned about yourself in this process Jennifer.

SPEAKER_01 30:18

Oh my gosh again so many things and I think the lessons are still evolving but I think just really leaning into being uncomfortable and that I don't have the answers um you know I've always told Sarah that you know I know she's super capable and she's gonna figure this out and that I am here to give her what she needs. She just needs to show us and she's always had a very unique way of showing us what she needs. So just you know really leaning into that mindset of like I don't have to have all the answers with this and you know keeping that door open to possibility I think is so hard when you're on the journey because you want it so bad for your child and you know you want to see the progress and you know it's just not sometimes on the timeline that you expect and really you know leaning into it's not about how long it takes it's just about getting there. And everybody's journey has to look so different. And I've always told Sarah you know what we're just gonna do whatever it takes as long as it takes to figure this out and that mindset has really kind of become a mantra of our life like we know we're gonna give her a life that has the most autonomy possible in whatever way she needs to have that. And you know really just leaning into now is not always yeah you know for me like we're so used to like oh clicking on Amazon and it's here the next day or sometimes like two days you know two hours later it's at my doorstep and it's like wait a minute that's not real life. The real life happens when you misstep and you make mistakes and you learn from it and you grow from it and you keep going. And I think that's the most important thing that I've really taken from this and I hope Sarah takes from it too is you know the missteps are part of the story. And um we all have so much to learn about what's possible because pretty much anything is possible if we just you know really stick with it and put our energy where it needs to go.

SPEAKER_00 33:00

I always say your child can do anything if you're willing to throw your timeline out the window. It's true they're gonna have their own but if they are if they get the right supports I believe they truly are capable of almost anything. But nothing crushes progress like feeling rushed or time pressure and often that comes from us not from them. And so keeping that in check is super crucial on the journey. And I was wondering Jennifer if for our last question to wrap it up I know you've been part of my beloved group Autism Changemakers for about six months and I know you were already on your spelling journey when we met.

SPEAKER_01 33:43

And I was wondering if you could speak to how the group has supported you in any way as you've walked this path spelling or otherwise yeah I think you know I came to Autism Changemakers at a time you know in our journey where I was getting really frustrated and I was like gosh this is taking forever again going back to that timeline. And um I really needed a place that felt supportive and looked at obstacles not as roadblocks as ways to grow. And I think you're really good at focusing people on growth which I think is so important for all of us but especially as on you know when we're on a spelling journey of just growing and keep focusing on what's possible. So that's you know and being around a group of people that are walking the same journey as you I think is so empowering because you can take parts of everybody's story and you know glean on to it and make it part of your own and use it for your own energy to keep pushing forward. So I think that's what's really helped me of just you know taking all of my crazy like ideas that I have floating around in my head and really focusing in and channeling that um effort and you know the possibilities of what happens when we keep pushing forward.

SPEAKER_00 35:21

So absolutely thank you for sharing that I also feel like whenever we're learning something new or we're climbing the next mountain ourselves as individuals included the best way to get there is to have a role model someone supporting you or coaching you or showing you the way because I've seen with autism parents that most of them will do pretty much anything for their kids. They just need someone to show them the way and when Rocca was little I swear I had to go to the ends of the earth to find people to show me the way and it shouldn't be that hard. And what I love about our group so much is if you throw a bunch of autism parents in a room together, there is nothing that we haven't collectively experienced. So when someone comes into the group and says hey I'm struggling with school advocacy or toileting or feeding issues or sensory seeking someone in there can say oh yep been there I've got it we we moved through it here's what helped us I can help you. And that's to me one of the most valuable parts because not only do you get the help that you need to get through whatever you're facing spelling or otherwise but you also feel so much less alone knowing oh I'm not an outlier. This person's been there as well usually a lot of us have been there as well and this is a place where it's safe to talk about it and I can be myself. I know nobody in here is going to judge me because they're all in it or have been in it at some point or will be in it and we can have that support that is really steadying together and move forward together. And if someone trips someone else is there to pick you up and that's what we all do for each other. So Jennifer thank you for being part of that group is there any last piece that you would like to share with our listeners is just one parting shot that you want them to know on their journey.

SPEAKER_01 37:28

I think if anybody can take anything from this time we spent together is you know not to give up to stay curious and to really just lean into what your child needs because they'll show you what they need. It might not be immediate but every step you take on this spelling journey every time you pick up the letterboard every time you spell with them you're learning something and they're learning something and eventually it all comes together and I think that's the biggest takeaway is just keep going and don't give up.

SPEAKER_00 38:11

Yeah and I always say I heard it I don't know where I heard it but I heard the phrase don't give up on a bad day and I think all of us have bad days on this path and those are the days where you most want to give up because some days it just feels like it's too much. And yet if you can breathe and support yourself and ask yourself hmm what's here for me? What could I learn from today? You'll have a completely different experience and then if you have the best day ever and you want to quit at the end of an amazing day just because you feel like your cup is full and you've learned enough great have at it but it's a completely different energy than quitting on a bad day. But most of us as parents in this population don't have the option of quitting so how can we support ourselves so that we can keep going and I'm so honored to witness you as you do this. I'm so honored to support you on your journey I'm so honored to watch all of us in Autism Changemakers support one another. And if you're listening and thinking oh I'm wondering if if this is for me do I belong here this and that this is a low stress environment you can join anytime you can try it you can leave it anytime but you may not know until you try so what do you have to lose by trying thank you for being here Jennifer I appreciate you so very much thank you everyone for listening we will see you on the next episode and if you want to join us over in Autism Changemakers where regular people like me like Jennifer are doing amazing things with our children which I think truly are miracles on a daily basis please come join us and experience it for yourself. You will be so glad you did.