Zibby is joined by Valerie Gilpeer and Emily Grodin, co-authors of I HAVE BEEN BURIED UNDER YEARS OF DUST, an evocative and affecting memoir by a mother and her autistic daughter who’d long been unable to communicate—until a miraculous breakthrough revealed a young woman with a rich and creative interior life. Valerie shares the extraordinary moment with Emily, after 25 years of struggling to communicate, typed her first words—unlocking a lifetime of thoughts and poetry. Together, they discuss the power of alternative communication technologies and the impact of finally finding Emily’s voice.

Transcript:

Zibby: Welcome, so excited to be here with Valerie and Emily. I already read your bios for I have Been Buried Under Years of Dust, a memoir of Autism, and Hope this is an incredible story. Couldn't believe it. It's really incredible. Valerie, why don't you kick us off and explain what happened and then Emily, you can chime in or just tell us how you feel about it.

Valerie: Okay. Well this is so interesting because Emily had had a lifetime of, uh, difficulty in communication and, uh, we had basically been tried all kinds of speech therapy and all kinds of things, and we went on a trip to Ireland and I, I start there because it's kind of the, kind of the genesis of the story, I guess, is that we start, we went to Ireland, uh, with a group of other individuals and after we had been on this trip and we were on a plane coming back and uh, Emily had a meltdown.

She has autism and apparently she was having difficulty on the airplane because there was really nothing for to engage her. And after months and months and months of working with somebody, we get off this, this plane after the meltdown, all kinds of trauma on the airplane, get off, sit down, and Emily sits down and she types out.

I have been buried under years of dust and now I have so much to say. So that was the beginning. Now this, this is the beginning of the communication that she started that has turned out to have changed her life and to change our lives as well. It of course, comes after 25 years of speech, the, and intensive therapies of all kind, um, and attempts to, uh, engage Emily, uh, in all ways that we could possibly do.

But this was really, this was really the huge breakthrough. It was magical. It was, and the funny thing is, is that the trip to Ireland, one of the things we wanted to do is we wanted to kiss the blarney stone, which of course lore has it, that he kissed the blarney stone and you are convert with the gift of gab.

Well, the blarney stone was not accessible that day because there are too many tours there, and it's quite crazy to do it anyway, because you have to kind of lean back and people hold the feet. So I said to her, Emily, just kick, kiss the castle. Kiss the castle, and I have this great photo of her leaning over and kissing the castle.

And that was the magic. That was the magic. 

Zibby: Oh my gosh. 

Valerie: So Emily, who seems to be a little tired this morning, she can tell a lot. Also, she has a lot to say about this breakthrough and, and, uh, what it meant in her life as well. So. 

Zibby: Yeah, tell me, tell me about that period of, of time and what it felt like to be able to connect and communicate in such a new way. 

Valerie: Emily.

Zibby: So Emily is typing and then it voice translates. 

Emily: First. Thank you. 

Zibby: Aw, you're welcome. 

Emily: Power having m going to play a little game.. 

Zibby: So she said, I'm gonna play a little game. 

Emily: To tell you about the first. Thank you for having us. I am going to play a little something I wrote to tell you about the book. 

Zibby: Perfect. 

Emily: The memoir is about me and my parents' journey navigating autism in a world that was not built for autistic people.

It is about resilience. It's about trial and error. The book is very personal, as it is filled with our experiences spanning my entire life, the good and the bad, and yet I think it is an incredibly familiar story to so many. That is really what motivated us to share our own story. We knew that countless others had lived or would someday live similar experiences of autism, communication challenges, and building a meaningful life amidst the circumstances.

My poetry was added to the book as a way of offering a glimpse into the intimate details of sensory challenges, social acceptance, and living as a minimally speaking person. 

Zibby: Wow, Emily, that's beautiful. Thank you. And it's really powerful watching you type your thoughts, getting access to what you're thinking, this amazing technology.

That enables you to communicate. Valerie, how does it feel? I know you're used to it by now, but hearing Emily talk about the book in this way? 

Valerie: Well, it's, yeah. It's not just, you know, it's been, the book was published in 2021. 

Zibby: Mm-hmm. 

Valerie: And so over the years. Initially, you know, my interest in in the book was really to share with people the incredible power of communication, essentially, and that one should never give up.

I mean, Emily was 25 years old when she started to communicate in this way, and since then what has happened is that it has opened up avenues for her in her life that were unimaginable. I mean, she told us initially she wanted to go to college. We initiate, we arranged that we, she started going to a community college.

She's now at Csun. She's became this extraordinary, uh, poet and writer. So many things changed in her life, and every day Emily writes something else more beautiful. I mean, she has this incredible knack, uh, for writing poetry. We just got back from Europe, and today she, she wrote out a beautiful poem about being away and coming back and what that's, what's that like to return from foreign lands? And it's just, it's been an amazing, it never, she never ceases to amaze us because every day is a new day of revelations. Every day is a new day where we learn something more about her, more about who she is, what she wants from, and what she wants from life, which was previously really unknown to us.

We had no way of really knowing, except for the basics of, yes, I want maybe want a cookie or I want this or that, or basic needs, I would say. And so what changed for us was getting to know who our daughter is, you know, really being introduced to her at 25. I know that sounds odd because we were so intimately involved with everything about her, everything about her life, and providing the best life we could for her.

Um, but knowing what she wants, what a person wants, and their inner thoughts and feelings is a whole new experience, which I think is hard for people to understand except for the community that we live in, in our community. You know, this opportunity that comes with communication for the first time changes everyone's, someone's one's life.

And we want people to know about this technology and about the ability to do this because we want other people to have this joy, you know, to experience for themselves and to get to know their children. Wow. 

Zibby: So Emily and Valerie, do you think that all artistic individuals have. This same capacity for creativity and thought and everything, and it's a function of communication mostly.

And with the correct technology, the the not knowing people is going to be soon a thing of the past. What do you think? 

Valerie: What do you think Emmy? 

Emily: I think everyone is creative. They just need the proper tools in an extra lending hand to get to where they want to be. 

Zibby: So true. So, so true. 

Valerie: Yeah. I think that at Emily's particular level of creativity is maybe not where everyone will be, but I certainly think that the, the communication tool, um, to enhance the level of communication that people have is what we.

Think that this methodology can, uh, assist with incredibly, in my opinion, you know, everybody's got their own talent, if you will, and the level of talent varies from person to person, but I, communication is just so important. I mean, how I changed her life, uh, in friendships and in in education and access to the world.

I mean, and it's still a challenge. Because you know, it's still a challenge. It's still a world that doesn't completely accept this methodology, but still it's making inroads. 

Zibby: That's wonderful. And how has the book changed both of your lives? 

Valerie: Or or has, or has it? Maybe it's Well, it has, I mean, absolutely. I mean, it, it, it is introduced, Emily, there are so many things that Emily is now able to do.

I mean, she's now a, a senior at a, you know, a four year university. You know, she's a, a lead in a, in a movie that's being, uh, written by another individual who is on the, the spectrum. She's. Has these incredible friendships with people who are also typers. It's just enhanced her life in ways that we never would've expected, and it's really, really opened her world completely.

What do you think, sweetie? 

Emily: It has definitely opened so many doors, and it has always nice to hear that my story has inspired other families to never give up and fight for their love once, just like my mom did for me. 

Zibby: That's so nice, Valerie, that must feel so good. 

Valerie: It does. I mean, you know, Emily's Emily's level, level of gratitude that's been expressed has been remarkable.

You know, you always wonder what your child would say about you if they could talk or what they would say to their psychiatrist you about you. But she's, she's had such a level of gratitude for everything that we've done for her, and so happy. You know, to be in the place that she's in. And she lets us know that all the time.

And it's really good. It's nice to know that the hard work paid off for all of us, you know? 'cause it was a, it's been a lot of hard work. I mean, Emily was diagnosed when she was, two years and years of speech therapy didn't get us where we needed to be. And then we had this, she had this breakthrough. So it's been life changing and for us, I talk about what it's done for Emily, but also it's, it's made our lives so much more, so much richer because we know who she is.

And we can, we can talk, we can talk to Emily and feel like we can get a response. And she's honest about it. And she's a remarkable observer of life. She's perceptive. She understands people, she understands us. She knows when we're upset. She knows how to comfort us. There's just, it's a whole range of things which have happened.

As a result of the, the, this level of communication. So it's been very exciting. It's like we all have a new life together. 

Zibby: Wow. 

Valerie: So we've just been, we've just been having a great time since 20, since this all happened. It was 2016 that it happened, so it's now been nine years. So, you know, we just continued to, to really bask and these incredible benefits that have, that have come our way very miraculously.

Miraculously in some ways. And in some ways you have to say it's really is the function. Of the payoff of a lot of hard work, but not, but not giving up, which I think is the key here, is that, you know, it, keeping at it and keeping on it and finding ways to best help as Emmy says, your loved one, I think is the, is really the key.

Zibby: So if someone is listening and they have someone they love who is autistic, or they are an educator for those with autism or. Just want to help. How do they get access to this technology? What can, what, what can they do that you did? How can this be replicated? 

Valerie: Well, I don't know. I think the thing is you need to find a, a provider who can, uh, is, is good.

I, for, lemme say, I don't know if it could be replicated. I think that there are different methods of communication that utilize the technology. There's, you know, here locally, you know, Darlene Hansen in Los Angeles area was the person who, uh, we connected with somebody I knew professionally and then later personally with Emily.

She's a speech therapist who is very much an advocate for alternative forms of communication, which is really what this is. There's a place in Virginia, I think it's called, it's in Virginia, called Speech to Communicate, S two two CS two CI think is what it's called. And then there's also another methodology that has been utilized that is the Soma method.

Uh, she's in Texas and she does something called rapid prompt. So there's different people, there's different ways. Some parents have come up with their own ways of simply sitting with her children and using in the computers technology. We, um, one of Emily's good friends started typing just because her mom.

Sat with her and started working with her and not being afraid. Now, sometimes for some individuals, there's some motor issues that are involved with being able to actually touch the keys, but for those who don't have the motor issues involved with it, there's different, different ways out there. I just would, I think people can Google alternative forms of communication and they will, they will come up with all kinds of stuff, either on Google or on Facebook.

There's all kind of groups. 

Zibby: And of course they have to read your book. I have been buried under years of dust. Valerie, Emily, this has been so inspiring. The book was absolutely beautiful. Your poems at the end are absolutely beautiful, and I'm inspired. I mean, you are, I'm sure, inspiring countless people and your dedication to creativity and how simple it is.

Just, you know, everyone's creative. And you just need the right tools and a helping hand. I mean, that's it right there. Thank you so much. 

Valerie: Thank you, Zibby. 

Zibby: Thank you Emily.