SeeHearSpeak Podcast

00:11 Tiffany Hogan: Welcome to See Hear Speak Podcast Episode 19. In this Episode I talk with Jodi Oliver for a parent perspective on Developmental Language Disorder. Jodi is also a clinician and advocate.
This conversation is 1 in a 5 part series on Developmental Language Disorder (known as DLD) released this week in honor of DLD Awareness Day, which this year is on Friday Oct 18th.
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01:23 Tiffany Hogan: Jodi, thank you for joining the SeeHearSpeak podcast, to give us parent perspective on DLD! I’m very happy to have you here, especially since we are putting these episodes out for DLD awareness day. I'll have you start by introducing yourself.

01:41 Jodi Oliver: Well, thank you. I'd like to thank you for inviting me to participate. My name is Jodi Oliver as you mentioned. First and foremost, I am a mother of two amazing kids, I can say that because I am their mother. My daughter is almost 20, and I have a son who is almost 18. So aside from being a mother, I also work as a speech language pathologist in outpatient neuro rehabilitation with adults.

02:09 TH: Fantastic. Well, I feel really lucky because I've gotten to know you a bit through the DLDandMe website. We're both co-founding members is what we call ourselves, I believe Carla said. I also have to say, I don't think I've told you this before, but I was very inspired when you spoke at ASHA with Carla and Sean. I thought that was very cool a couple of years ago when you spoke about your perspective as a parent and an SLP. It inspired me to join the DLDandMe team, and just really glad I got to hear you do that. So you said you have a child with DLD, so how did you find out she had DLD?

02:50 JO: That's a really great question. I actually was her primary caretaker. I stayed home and worked nights as a nurse, so I was with my daughter quite a bit during the day. I noticed that she had difficulty with pronouncing words. So a lot of people that would come over didn't understand her. I of course understood her, because I knew her body language, and could anticipate what she wanted or needed. But it wasn't until she hit about pre-school that we decided to have her tested. Of course, articulation and phonology popped up. Once that was remediated, the speech language pathologist tested her for language, and indicated that there was a delay there. So I thought, "Great, let's get her more services, and catch her up to speed and then everything will be great."

03:38 JO: And it wasn't until she was in elementary school, and I was attending a university taking classes in speech language pathology, that I realized what might be going on. One of my professors brought to my attention that it sounds like my daughter has DLD. So of course she participated in one of the studies, and he tested her. Sure enough, that was when I found out that my daughter had DLD.

04:01 TH: Wow! So what resources did you have at that time, when she was diagnosed?

04:07 JO: The internet. I was glued to the internet googling anything. Then of course my professor, he had quite extensive knowledge and as a researcher in this area. So I would have conversations with him and he would guide me to other research articles. That was pretty much the extent of the support system and the resources that I had at that time.

04:27 TH: So as an SLP, it sounds like you were a nurse and then you went back to get your SLP degree...

04:32 JO: Correct.

04:23 TH: What drove you to get your SLP degree?

04:36 JO: Both of my children have what I call language learning disabilities, that's the easiest way I can explain it to someone who's not familiar with speech language pathology and language. My daughter of course has DLD, and then my son was diagnosed with autism. So speaking was his most challenging area. He just had such a difficult time verbally expressing himself, and making his wants and needs known. So his primary mode of communication as a toddler, and a young child, was sign language, and Picture Exchange Communication System. I figured, as a primary-care taker and a primary advocate for both of my kids, I needed to learn more about what was going on. So I decided to pursue speech-language pathology, and before I knew it, I was graduating with the second Bachelors. I loved it so much, I decided to go on and get my Master's.

05:30 TH: Oh, that's awesome, [chuckle] well aren't we lucky then? That's fantastic. How did your training as an SLP inform your parent perspective, when you were raising your child with DLD?

05:41 JO: When I went back to school, my daughter was probably in about junior high when I was in school pursuing my second bachelor’s degree, and I started doing therapy in-home with her coming up with my own therapy activities. Now, of course, I had to mask it so it didn't look like therapy, because if I did traditional therapy with her, then she would stop working with me. So I came up with activities in the kitchen. She loves to cook and so I pulled in a lot of different types of activities targeting language. Functional things like that are such a great way to target language. There're so many verbs, irregular verbs, that we targeted in the kitchen preparing dinner, and cleaning up, and just connecting with her and having conversations with her. It was really great, I learned how to kind of sabotage things so that it made her talk more and use different vocabulary. That was fun, it was a fun activity for us to do together.

06:50 TH: That does sound fun. It sounds like because you had to be in incognito, you could do it in a way that helps you just connect with her and...

06:57 JO: Exactly.

06:57 TH: Have that conversation, which is cool.

06:58 JO: Exactly.

07:00 TH: That's very cool. So did she ever catch on that you were doing it?

07:04 JO: Never!

[laughter]

07:05 JO: Not once!

07:06 TH: Fantastic. That's really fantastic.

07:11 JO: Not in the kitchen at least, but with homework, yeah, and other areas. But I was good in the kitchen!

07:15 TH: That's great. Oh, that's really cool. How have you had to advocate for her, because you have this knowledge about DLD. Especially as an SLP, how did you advocate for her with her teachers and maybe her friends or other parents?

07:30 JO: When she was enrolled in the public-school system, I actually went from teacher to teacher. I explained to them the diagnosis, and how best to communicate with her. You know, to not only give her verbal instruction, but to make sure that visually she can see it as well. If they ask a question, write the question up on the board so that she can refer to that. A lot of teachers do not have any awareness of DLD, which is shocking given the statistics of how many children with DLD are in each classroom. So it was a little bit challenging. Most teachers were very accepting and appreciative of the information I provided, but some of them were very skeptical. I think they thought that I was just maybe like a helicopter mom, and a little bit too paranoid and worried.

08:13 TH: That is so frustrating because they think maybe you're making excuses or something when you're just trying to advocate. But what a great benefit to her. Did she pick up on the advocating for herself? Does she do that now?

08:28 JO: She does. I am happy to say that she is actually out of the home, and she completed her sophomore year in college, straight As.

08:36 TH: Awesome.

08:38 JO: She does advocate for herself now. I haven't had to do anything, I just kinda take a back seat and get to watch and if she needs me, I'm here. But she's living right now in the State of Washington, and she's doing great.

08:52 TH: That's so fantastic. Does she know about the advocacy you do for DLD? .

08:57 JO: A little bit? She doesn't know too much at this point. She’s pretty busy, so.

09:02 TH: Yeah, exactly. I remember being sophomore in college or junior. You're just so caught up in what you have to do day-to-day it's hard to know. Especially to know what your parents are doing, that's probably the least you want to do. But you have done so much advocacy. You have a video on the DLDandMe website, and you spoke at ASHA. Can you tell us about those experiences and how that's, I don't know, motivated you to continue on for advocacy?

09:30 JO: It was fun, I really enjoyed it. I think what I enjoyed most was sharing my story, and having that reach out to other parents and other speech language pathologists. Connecting with them and letting them know that, first of all, for children who are newly-diagnosed, for their parents that they're not the only ones out there. They don't have to reinvent a wheel, there are resources out there to help them, even though it's limited when you compare it to other diagnoses such as autism. But it’s good to tell them that there's hope as well. It's not the end of the world, the child is the same today as they were before they received the diagnosis. The diagnosis, it's not going to limit what they can do. There's still a lot of things that they can accomplish with their life. It's not a devastating diagnosis, to me anymore.

10:22 TH: Well, that's very helpful I think for parents, especially I think several parents are just learning about DLD. Even if their child has had some struggles, now, because of this advocacy, they're starting to get more of the label. I'm hoping that we're creating some content that does give parents some hope, and possibly some community as well with each other.

10:45 JO: Absolutely. I think the community and reaching out and connecting with others is really important. I'm the type of mother who, I would research it, and try to implement anything that I think might work. I push and push and push, and think I should have done this. I wish I would have done that. Looking back I realized I did the best I could with the information that I had at that time. One thing that I do regret, is that I feel like I didn't protect enough any family time to take off my therapy hat, and just be mom. You know, spend time with my child just as her mother, and forget about therapy for a little bit.

11:27 TH: That is really such an important point, because you're always going to be her mother, and she will maybe have other people that support her. You're obviously her biggest supporter, but you don't always have to feel like you're the one that has to do the language stimulation all the time. Because DLD is only one portion of her persona, what do you think about when you think about the time you've had with her or different aspects of her that it's not related to DLD?

11:53 JO: Well, my daughter, like I said, is amazing. When I think of her and think of her as a whole person, DLD is just one part of her. She’s a lot of fun to be around. She has a great sense of humor, she's musically inclined, so she plays the violin, and she also sings. She loves to read, and she loves being in college. She actually told me the other day that she wants to be a neuro psychologist. So as much as I support that, I don't really foresee her being a neuro-psychologist. But I’m going to encourage her! And support her, and hope she explores other options as well.

12:34 TH: Yes Absolutely. I know I'm a mother too. You gotta be realistic. And we're always thinking about the future income and independence, right?

12:44 JO: That's right.

12:44 TH: We can't help it, we’re mothers, its what we do! We have to think about that. So what do you think, in terms of the advocacy you've done. What have been some of the barriers? But also what have been some of the facilitators?

13:01 JO: I think some of the barriers would be again, just the lack of awareness, and the lack of resources. It's been really difficult. When my daughter was first diagnosed, I felt like I was the only mother out there who had a child with DLD. I felt very alone. So not having a support system, a sense of community, outside of my immediate family, I think that that was definitely a barrier. I'm so excited that this website is up, the DLDandMe.org. I love that there's an awareness day of DLD, because it's more common than autism, and unfortunately, there's less information out there about it. But I've also enjoyed reaching out to other parents and being a support to them, and being a sounding board for them. If they have questions, I'm more than happy to sit down with them or have a phone conversation with them. Listen I find that oftentimes, I think parents just want somebody to listen to them, and to validate them. They want help not only processing what they're going through, but again, know that they're not alone. There are other people out there who are in the same boat, or at least were in the same boat, and have experienced it.

14:27 TH: I think you're in such a unique position too, Jodi, because you're a parent, and your child's older. So you have the long view of what's happened, and you have the broader view of parenthood. Then there’s also the fact that you're an SLP, so you have the training too, and knowledge from that angle. So, I'm sure anyone who gets to speak to you is really lucky from all of those angles.

14:50 JO: Thank you. I can tell you though, when she was younger, in elementary school, it was incredibly devastating to me to have this diagnosis. It was frustrating because therapy did consume a lot of my time with both of my children in fact. When I would come home from work eventually, I ended up working days. I switched from nights to days. I would come home, and I would spend hours doing homework with both of my children. I was so depleted, and I know that they were so depleted. So looking back, again, something I wish I would have done is maybe talked to the teachers and get homework reduction. Or come up with this system, so that I wasn't so overwhelmed, and my kids were not so overwhelmed.

15:37 TH: Absolutely, it is so overwhelming because you do feel like the responsibility is on you. Then there is also the fear of the future like, "Oh, I have to do this now, because what's gonna happen in the future?" Now you have that long view and it's just so valuable now to see that long view.

15:52 JO: Yes, it's actually a little weird! I'm an empty nester, right now. I figured that's a sign of success that both of my, are out of the house and thriving. [chuckle]

16:03 TH: Oh absolutely, I think that it's what we all want in the future. Even though it is sad, I'm sure. I'm not there yet, I have a 13-year-old, I'm in the stage where I'm like, "Oh, how many years do we have left?" [chuckle]

16:18 JO: It goes by so fast, I can't believe I'm an empty nester and that they're out of the house. It's like yesterday, they were small and they needed me and now they're gone, so it's weird. But I'm enjoying it.

16:30 TH: Yeah, that's good, yeah. And also, you have so much that you're doing which speaking of, I always ask all my guests, what are you doing now that you're most excited about?

16:41 JO: I have a lot going on. In my professional life, I am building a program for... They had a NET cancer population. My role is to help maintain a safe and efficient swallow as individuals go through radiation treatments. Then I also work a lot with Chemo Brain. So individuals who are affected by not just the chemotherapy, but the cancer itself with the cyto kinds that cross the blood brain barrier and cause cognitive difficulty. So that's one area that I'm excited about.

17:17 TH: Wow!

17:17 JO: But in my personal life, I have caught the travel bug. I recently came back from Costa Rica, and now I'm headed to India and then Germany!

17:28 TH: Wow!

17:29 JO: So I've got some fun trips planned and I'm going to become a yoga instructor.

17:35 TH: Wow, Jodi, that's so cool! You’re really taking advantage of this empty nester. You're my inspiration.

17:41 JO: I am! I'm busy! I've got a couple of marathons that I'm registered for next year as well, so I'm busy.

17:50 TH: Wow! And we're keeping you busy in DLDandMe too, so it's all of it. [chuckle] That's fantastic! So glad I could catch you, and I really appreciate you sharing your story. I also ask this one question, what's your favorite book from your childhood, or now, or maybe when you read to the children?

18:11 JO: I remember my mother reading a book to me and my sister, it was called, I think, The Platypus Duck. It was about a platypus, and I just remember him always going out, and getting ice cream. So every time they got to that page, they would leave the room, and I would be in the room by myself. Because if I saw the page with the ice cream, I was always requested ice cream, and I could never have it. [chuckle] So yeah, that's one of my childhood books. One of the books that I would always read to my children though was a Dr. Seuss book, Oh, the Places You'll Go. I think it's so fitting, because even though both of my children have diagnoses that could potentially be limiting, I truly believe that whatever they put their minds to, they could succeed, and accomplish. So The Places You Go, just reminds me, no matter what diagnosis my child has, they can still accomplish the things that they want to do in their lives. That's what I'm excited about. It's fun as a parent to start now, to watch now their lives unfold. I love seeing them spread their wings, and take off, and experience things and take charge of their own lives.

19:25 TH: Oh Jodi, that's so inspirational, and I love that book too. Dr. Seuss is very special to me as well because I share a birthday with Dr. Seuss. It seems like schools now, or at least the schools I've been around, a lot of them do a Dr. Seuss day. They'll have you dress up as a character, and it's always on my birthday, so it's very special.

19:46 JO: How fun! [chuckle]

19:47 TH: Yeah, I know it's really fun! But any, regardless, that book is really fantastic, and I think quite inspirational to those who might be listening. Those who either have a child with DLD, or maybe they're concerned that their child might have DLD, or they are a support for someone with DLD, to know that there is a lot of hope and more support now. That book is really awesome.

20:11 JO: Yes, I would agree.

20:14 TH: Well, thank you so much, Jodi. It was so good talking to you.

20:16 JO: Thank you!

20:17 TH: I appreciate you taking the time on the podcast to share your story.

20:21 JO: Thank you for having me!

20:25 Tiffany Hogan: Check out www.seehearspeakpodcast.com for helpful resources associated with this podcast including, for example, the podcast transcript, research articles, & speakers bios. You can also sign up for email alerts on the website or subscribe to the podcast on apple podcasts or any other listening platform, so you will be the first to hear about new episodes.

Thank you for listening and good luck to you, making the world a better place by helping one child at a time.