Podcast Episode 33: Emily Grodin and Valerie Gilpeer

ALISON:Okay. Come on in.

JEAN: There we are.

ALISON: Here we are.

JEAN: This is one of my favorite things to do.

ALISON: Sit together, jammed up into a microphone and having fun, right?

JEAN: Yes.

ALISON: Just hanging out. We love it. How was .your day?

JEAN: My day was busy. I spoke to a lot of people today, and, uh. But it was a great day.

ALISON: It was. And I started Tai Chi today.

JEAN: You did? that’s right.

ALISON: Yes. And it, um. You know, it looks so easy, and the guy turned around and he goes, “Alison, how did you do?” And I just said to him, I’m glad you weren’t watching. And the guy starts laughing. Yeah, because that is the truth. I’ll get better.

JEAN: And I love that you’re doing that. You’re really doing some unique things that that you have, not unique, but things that you haven’t been doing all your life.

ALISON: It’s stuff that’s starting with T – tap and tai chi.

JEAN: Right…well, go you!

ALISON: I’m gonna be a twirling dervish next.

JEAN: You’ll be a twirling top.

ALISON: That’s correct. So we have a wonderful interview today.

JEAN: We do. We have Emily Grodin.

ALISON: And her mom, Valerie.

ALISON: Emily is an incredible poet. And the two of them wrote a book called, “I Have Been Buried Under Years of Dust- a memoir of autism and hope”. Emily is on the on the autism spectrum.

JEAN: Right. And her mother, Valerie, and her dad, Tom, really championed her to, um, help her speak.

ALISON: Right. And they use, um, they use a technique called facilitated communication. So there’s a woman sitting with Emily, and her name was Stephanie, i think when we talked… Was that right?

JEAN: I don’t remember her name, but she was very nice. Right?

ALISON: She was very nice…you’ll hear her be introduced. And then when Emily responds to her questions, you’re going to hear like a robotic Siri, like, um, computer voice. Because what Emily is doing is typing and then it speaks back. Right?

JEAN: Right. And what a great device that has really opened up Emily’s life to this creative expression of writing. And she she’s actually writing a screenplay.

ALISON: Yeah. That’s right. And her poetry I found so moving and so, um, deep, meaningful, deep and meaningful and so accessible for, for so many people. So we think you’re going to love this interview.

JEAN: We know you’re going to love it.

ALISON: Ohhh…

JEAN: We do.

ALISON: Being definite.

JEAN: Such a treat… Valerie.

ALISON: We read your book and it’s really amazing. Emily, you are such a beautiful writer.

VALERIE: Hello.. And Stephanie Lewis is with Emily. I should introduce Stephanie. Stephanie, stick your head in there.

STEPHANIE: Hi. That’s me. Hi. How are you?

JEAN: I just first want to say that, um… So, I’m Jean, and this is Alison, and, um. your story is amazing and I think it brings such hope to.. It’s just another huge beacon of hope for people to know that this modality of communicating is out there…

VALERIE: Right, yeah.

ALISON: And I thought what was amazing was even if, uh, right now I feel like the world needs more hope. And I feel that your book communicates that in a larger spectrum- that the two of you, uh, really never gave up.

VALERIE: Well, and Tom too, are the three of us.

ALISON: Yes. I’m sorry.

VALERIE: Yes, Tom was such a big part of this, too. Because he, you know, he sort of brought me back when I was sort of, you know, careening out of control a little bit. I mean, it was, you know, there was a balance to it, you know, I mean, Emily, Emily went through so much. I mean, the child was subjected to one therapy after another. And she never complained. She never, you know, pushed back. She just sort of went along with things, you know, and and on our part, you know, was constantly searching for things that would help her because, you know, it wasn’t to normalize her. It was just to help her have access to the world. And I think that’s one of the things that I kind of want people to understand, because some of the comments that have been written about me, um, in on some platforms has been that I was trying to make her quote unquote normal, but what was not the case… I mean, I love Emily as exactly as Emily is, for who she is, in every aspect about her. I mean, there’s not anything I don’t love about my daughter, but, you know, I understood the challenges that the world presents. And I really was just trying to, um, make her better able to access the world, um, given who she is. And I think any parent does that. I mean, all of our kids have. I mean, everybody has their limitations. I have my limitations. You know? I mean, you try to maximize what you can, so that you can have a good life, you know? And that’s all I was really trying to do for her.

ALISON: I never felt that reading the book. I have to be honest with you. I actually just, we both have two children, and they’re just around…. Emily, how old are you right now? is that okay to ask? I’ve never asked a woman their age, but how old are you, Emily?

STEPHANIE: 29. Oh, sorry. I have her volume super low. 29 there.

EMILY: 29.

ALISON: Wow – so you’ve been able to find this opening for yourself to communicate, Emily, for the past five years?

EMILY: That’s right.

ALISON: Very nice…And your poems, um, I was so moved by your poems. Some of them… see, I’m going to get teary eyed… Some of them truly expressed things that I have felt in my life. And I thought the universality of them was so moving. How long does it take you to write a poem? Does it just flow out of you quickly, or is it something that you spend a lot of time with?

EMILY: They come quickly. I would usually complete in an hour.

ALISON: That is shocking…that’s like you are a muse.

VALERIE: You know, it’s interesting…that’s how poets are, though, you know, I mean, Paul Simon, I don’t know if you ever saw that that exhibit up at the Skirball about Paul Simon, but he would go to a Chinese restaurant and just write down on a napkin. And that’s really like Emily. I mean, she just it just comes to her. It’s really extraordinary. Um, she wrote a few weeks ago, we were out in the sun too much, and she got a terrible sunburn on her feet, of all places… The top feet, the worst. She wrote the funniest poem,just like that about the sunburn. She gets moved. I mean, it really is amazing. It’s just a total gift.

ALISON: Yeah.

VALERIE: A gift, isn’t it, Emmy?

EMILY: It is.

JEAN: So Valerie, can you tell me, um, what was your inspiration to write a book after you saw that Emily was really opening up to being able to communicate, it was like you pulled the lid off, right? I love the title – “I have been buried under years of dust.” I love the title. I know that Emily said those exact words to you…. And so what was your intention?

VALERIE: Well initially, my intention was to publish Emily’s writings and her poetry. And that’s how initially we approached various, um, agents and unfortunately, none of them or fortunately, I suppose, because we ended up with this great book. Um, they felt that the writings of an individual with autism would not be a sell, and nobody wanted to get involved with it. So I contacted some people that were pretty well known, actually, in the business, and they said, oh, what you should do is you should just get Emily published in as many places as you can, and then eventually her name will be known. But there was one agent, who I was referred to, who read Emily’s work, and he went, “oh my God. You know, this is incredible stuff.” But even more incredible, is the story of how you got there. And he said, I think that’s the story that should be told. And so we talked about it and we discussed it, and we figured a way to propose it. But my main proviso was that her work had to be included throughout the book. And that’s how the reflections came up. So it was, you know, that’s how her work is integrated, because that was important. People needed to hear her voice. It wasn’t just the back story of how we got there, which I think is the backdrop to me. It’s the backdrop, you know, all the work, everything that happened. It’s the predicate, you know, to what actually was developed. And I think it’s important, but more important, is that her words come out and that the light be shown on her, because that was my initial original intent. It wasn’t about me and it wasn’t about Tom. It was about her. And, um, you know, I mean, really, I have to be honest, and I’ve shared this with many people before, is that after so many years of people not recognizing Emily’s strengths and just how bright she was and how much she had to contribute, I wanted a light to shine very brightly on her, very brightly on her. And that’s why this, that’s what was my goal. I mean, that was my goal always. And so we accomplished that. I mean, you know, once Emily wrote those first words were so profound — “I had been buried under years of dust.” I mean, who writes that? Who says that the first time coming out of their mouth? And the interesting thing about Emily was that, you know, this methodology of communicating with facilitated communication or supported typing, whatever you want to call it. Um, what was interesting about it for her was that it wasn’t just a matter of communicating wants and desires, she could kind of do that, but it was full thoughts and very lyrical thoughts and beautifully put and so expressive and perfect typing. Perfect spelling. Uh, you know, everything in that book, that’s hers. We do have a note at the end, is all original writing. There’s no editing to any of that. Um, which is really important because here’s a person who did not communicate verbally and who really never, never wrote because she because they did not, were unable to measure her capacity in many ways. Um, you know, our testing of individuals is typically with verbal responses. And so it was hard to measure, I think, for people people knew that she was bright because she, uh, Emily was, you know, so responsive and and so capable nonverbally. I mean, her nonverbal, her level of nonverbal communication was unbelievable. And her way to accomplish things was nonverbal. And her way to manipulate was really very clear to people. But in terms of her expectations of her writings, she had, you know, she her she was never she never wrote a story. She never wrote an essay. She never did any of that all the way through school. Um, her testing was done really by multiple choice… Yes. No, that sort of thing. Yeah.

ALISON: What’s interesting is that it made me realize, uh, what a powerful listener you are Emily, you were listening, I guess, to be able to absorb and write in such a way, listening to teachers and people for many years and being able to to to take that in. I found that moving because I think so many times, unless people, um, I feel like sometimes people sell other people short in their daily lives. And you are such a lesson that to me that, um, people that are different than me, people that might–like senior citizens, you know, like my, my grandmother reached a point and sometimes people would think she couldn’t hear anything. I knew she was hearing every single thing because she was communicating with me, and I found that very profound for you, Emily. In your classes now, are you still in, did you graduate college? Are you still at, um, Santa Monica College?

EMILY: Still at a local school.

ALISON: Where do you see yourself in in 5 or 10 years, Emily? What what do you think about that? Like in terms of your future, where would you like to be in 5 or 10 years?

EMILY: I would like to have a degree and I know I will always be writing. Maybe screenwriting next.

ALISON: Wow, that would be great. I would love that. I would love to read one of your scripts.

VALERIE: Yeah. She’s, uh, she’s kind of been working on something, so. Yeah. That and continued poetry. Yeah. I mean, shout out to Valley College. She’s she’s going to Valley College now and she has been for a while and um, Los Angeles Valley College and. Yeah. So she’s going to just get her preliminary stuff out of the way. She’s a few more courses to go, and then we’ve got to figure out what the next steps are going to be.

JEAN: So Valerie, I know that your friends with the Asner’s. Yes, we did a little article on them on insidewink. And can you tell me how you got, uh, introduced to to the Ed Asner Family Center and how that helped you or if it did?

VALERIE: They had a camp that I sort of learned about through some friends. And then when they moved here into Reseda, I heard about the center and I went to see it, and I didn’t know Matt or Nava personally before that. But after we went over there and we we saw what a beautiful, incredible setting it was. Um, and the place is absolutely gorgeous and the types of programming that they were offering and that it appealed to, they had programming actually, for older individuals. It wasn’t just for, um, children. They were offering activities. They were offering um, uh, acting and hooking up with some with a miracle project and other acting classes and social activities. There was drumming. There were other things. And so that’s how, you know, we got started with them and we were with them. We but we didn’t start until right before the beginning of 2019, you know. So it went through until the pandemic and there were some great parties. I mean, there was a great Christmas party, I mean, an unbelievable Christmas party. And people came from all over, you know, the South, the South area, from Los Angeles, even people from the West side who don’t ever want to come into the valley, we’re coming into the valley because it was such a great party and they had food trucks and everything.

VALERIE: So that’s how I really met them. I knew Nava’s story, I knew the back story of Nava, and I knew of Ed Asner, and I knew, you know, through some professional connections. But that’s how really how I met them was really when Emily and I first went over there and she participated in their activities, and then we got to know them better and better, you know, as we went along and, and are really delighted to be part of their circle. Um, honestly, I mean they are fantastic advocates and the environment is beautiful and. Emily is now participating, there’s actually – they have the autism spectrum dating or something, you know, for kids on the spectrum to learn how to kind of socialize and to date and that sort of thing. So that’s a really nice thing for Emily. And that’s, you know, it’s hard. The activities for older individuals are fewer and far between or ones that are eaningful. And so they’re providing that opportunity. And I think it’s smart of them to recognize that kids grow up, you know?

ALISON: How long did it take you to write the book… Like how long was it, how many years was the process?

VALERIE: It was a two year process.

ALISON: I couldn’t put it down.

VALERIE: Oh, good. I’m glad you liked it.

ALISON: Really..you know, we get a lot of things to read and and talk to people, and you try to at least be familiar with it. And I have to tell you, I finished it in a day. I could not put it down. My husband’s like, are you going to eat dinner? I was like, no, no, she’s going to Ireland. I got to get through the Ireland part. You know, it just was really, really…it just made me cry.

VALERIE: Yeah. The Ireland part was crazy. I have pictures, we have pictures. Um, there’s some pictures on the website. I know when, um, Fox LA did the, um, the piece with Michaela Pereira, they had the picture of Emily actually kissing the the castle, which was the craziest thing. I mean, if you’ve been there, you know, it’s a difficult place to, it’s difficult to kiss that stone anyway, and probably isn’t the healthiest thing in the world but we couldn’t do it, because of the tour group coming in from the ship, the tour, the cruise ship that came in on the west coast of Ireland.

ALISON: So I liked your improv, like kiss over here, kiss this wall. And you know what? I believe that it’s all connected anyway. So, you know, make the castle the stone… Like kiss this brick, that brick. I thought that was great. I loved your, um, sort of like… All right, this will do.

VALERIE: Desperate, desperate measures.

ALISON: Right? We’ve all we’ve all been there. I think that was pretty great to improvise. Yeah., I was also very moved by what you wrote, Emily… Emily writes a section about, um, her parents that is so moving to me, and I want to read it to my kids and say, pick up a pen. It really was so beautiful, emily, what you wrote about about your parents. That was a beautiful, beautiful moment in the book.

EMILY: Thank you. And earlier talking about being a good listener. My parents, they really knew I was taking it all and grateful for that.

JEAN: Yeah, I love that you say that, Emily. I think it’s such a poignant and powerful acknowledgement –it’s that giving and receiving are one. That your parents saw you, saw beyond your challenge and um, and just never gave up. But they actually saw you… The truth of you. That’s one of the reasons why Allison and I talked about naming our website inside Wink. It’s the love, the goodness within everyone that comes out and, um, and we all need to do that for each other. And you know, I know your parents, um, that’s such, such a powerful act of love. And I’m so inspired by both of you. I’m going to start crying.

VALERIE: Thank you so much. Thank you.

ALISON: So beautiful. And it’s really that this book is a love story. And, uh, we really appreciate you being here, and I’m so happy that you two are being honored together.

VALERIE: Thank you. Yeah.

Speaker3: Valeie, is there anything you want to say before end?

ALISON: Or Emily?

JEAN: Or Emily, Yes of course…

VALERIE: There’s so much to say, I mean, we hope certainly that people, you know, will understand the importance of just never giving up and understand that, you know, just because a child each reaches that magical age of, of so-called maturity or 18, doesn’t change anything. I mean, there’s still a child, an individual who needs, could need possibly some more pushing and assistance. And I know it’s considered a magical date by many people and many parents of kids with challenges. But, you know, like you continue to grow and develop. I mean, I’ve always said to people, look, I feel like I continue to to grow and develop well, well past 18. And why shouldn’t our kids, you know, why shouldn’t we continue? I’m still I’m still developing. I’m still learning, constantly learning. And I feel like the elasticity of the brain is such that, you know, you have to really go in there and mine it and use it and, and keep at it. And I and I would encourage people to do that. All people, you know, you don’t just stop learning, you don’t stop developing. And I think that’s a big mistake for a lot of people.

ALISON: You kept going and kept trying.

VALERIE: And we still are. We still are. It’s not over.

ALISON: Righ…Did you know you had this much, um, strength?

VALERIE: Well, you know, I’m super stubborn and I’m super independent, and I think that I think it, you know, you don’t you’re not left with a choice. You know, to me, they’re, you know, it’s kind of like you have to rally because there’s no choice. What are you going to do? Nothing. So if whatever may have been lacking in me, was certainly pushed to the to the edge…there just is no choice, in my mind.

JEAN: Right. I have to just speak to that because people would say that my husband, when he was going through his cancer treatments and everything, he they’d say, oh, Alex, you’re you’re so strong. And he’d say, I don’t have a choice. I’m just doing what I need to do.

VALERIE: Exactly.

JEAN: And I think that’s such a recognition of the power of the human spirit that we just rise to the occasion, and there is a choice… Do we want to throw in the towel? Or can we just know that there’s something else we can do, something more, more expansive? Yeah.

VALERIE: Right. And that’s always been that next challenge for, for us, you know, as a family… what is that next step? You know, how can we raise the bar? I mean, and I will say that that was you know, that was one thing I think probably the biggest difference between my view of things and the school district’s view of things was that they wanted to lower the bar, and I wanted to raise the bar, you know, and that was always it. And I think that, you know, in many ways, the reason for wanting to raise the bar is that because I did see this extraordinary light in Emily and an extraordinary capability which they may not have seen, but I saw, that we saw, Tom and I saw and you know, you just don’t let that be, you know, no parent lets that be. Um, you can’t… It’s impossible to do that. Um, so, you know, that’s that’s kind of what has kept us going and still does. I mean, every day is, I used to say every day is a new dawn with Emily. I didn’t know who I was going to wake up to. I didn’t know who or what was going to happen. And this was, you know, when things were were kind of bleak. I didn’t know who, what was going to happen, who she was going to be, what was going to be our next…. And it’s still the case now. You know, I still don’t know who she is every morning going to be every morning. I have a better sense now because she can kind of communicate better. But honestly, I mean, it’s always a new challenge and I guess I like challenges.

ALISON: I guess, I guess…Well, you were presented with challenges. You know, you’re going to you’re going to like them or not, you know, and….

VALERIE: I think I figure things out a little bit later than I should of I, you know, I’ve sort of, you know, I sort of used to kick myself and say, you know, I should have known about things earlier on in the process than I did. And I had no excuse. You know, I was educated, I was a lawyer, I had access to things, you know, things that other people came to learn earlier about the disability. I didn’t know, um, and I don’t know whether it was because I was upset. I mean, my husband says I was very upset at the beginning. I don’t remember it being so that so, but maybe I was trying to figure it would, you know, it would it was just going to kind of disappear, you know, magical thinking, as I say in the book, you know, I was like a magical thinking. It’s like, if I think it’ll go away, you know?

ALISON: My favorite line of the whole book was, you were talking about something.. and then you said, “but first I had to make some mistakes.”

VALERIE: Yeah, that.

ALISON: Really resonated with me. Yeah. When I look back on my life, I went, wow, I guess I had to do all those, learn all those mistakes, go through all that.

VALERIE: Well, we all make mistakes. I mean, we all make mistakes. And, you know, you know, I always felt that none of them was irreversible. But you know, the thing is, time is really not on your side when you’re raising a child. You know, I always felt like every minute counted. It was like, every minute counted. Like, don’t tell me about giving me therapies in two years from now. I need them now. I need them today.

ALISON: I’m right there with you.

JEAN: Life is precious, Time is precious. It’s our gold….and what we do…. And we all know it goes by so fast. And we learn that lesson constantly. Now, whether what we do with that is, is another thing.

Speaker4: So do Emily, do you have any final thoughts.

EMILY: Just to always make your own path if there is not one for you?

ALISON: Oh.

JEAN: Oh you’re amazing.

ALISON: Emily….You’re really so spectacular.

JEAN: What a light!.

ALISON: Thank you. Thank you both for talking with us and taking up this this time. I really appreciate it.

VALERIE: Thank you. This was so delightful. You’re both are so lovely.

ALISON: Okay. Our computer is acting up right now…it’s not us.. Hahah

JEAN: It’s never us. We’re geniuses with TI…. I mean, people call us from all over the world to get help with this … HAHAH.

ALISON: It’s IT. hahahah. I really enjoyed talking to Emily and Valerie.

JEAN: Yeah, they are a lovely, lovely people. And I love that they really support each other. Valerie is just such a source of strength. And I know Emily feels so grateful for her parent’s support.

ALISON: That the last thing she said about creating your own path.

JEAN: Yes. Talk about being committed to your own life and not following someone else’s.

ALISON: Right. And you really, I couldn’t put this book down. It was a very fast moving read because their journey is so it’s so involved. And, you know, Tom and Valerie and Emily, it’s very involved and really has really deep highs and lows. But yet they never lost hope, which I really appreciated.

JEAN: And Valerie definitely has that, for me, that motto, “if where there’s a will, there’s a way.” So I am so inspired by both Emily and and her mom, Valerie.

ALISON: Me too. I’m inspired too.

JEAN: Okay…Well, we can both be inspired.

ALISON: I guess so…Hey, thank you so much.

JEAN: We hope you’re inspired.

ALISON: That’s right. Have a great day. Okay. Bye.

JEAN: Bye.