Episode 9: Supporting Children with Hearing Loss in the Mainstream
Episode #9
Episode 9 Show Notes
On episode 9 of All Ears at Child’s Voice: A Hearing Loss Podcast, Jessica and Tatum interview Dr. Uma Soman about the need to and how best to provide support to children with hearing loss throughout their educational careers.
Uma works as the Outreach Coordinator at the Carle Auditory Oral School in Urbana-Champaign. She received her master’s in Deaf Education from Smith College and her PhD in hearing and speech sciences from Vanderbilt in 2017. She is certified as a Listening and Spoken Language Specialist Auditory Verbal Educator. She is a co-founder of the non-profit, Listening Together, which aims to support parents & professionals around the world who are working with children with hearing loss.
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Show Notes
(Transcription at the bottom!)
On episode 9 of All Ears at Child’s Voice: A Hearing Loss Podcast, Jessica and Tatum interview Dr. Uma Soman about the need to and how best to provide support to children with hearing loss throughout their educational careers.
Uma works as the Outreach Coordinator at the Carle Auditory Oral School in Urbana-Champaign. She received her master’s in Deaf Education from Smith College and her PhD in hearing and speech sciences from Vanderbilt in 2017. She is certified as a Listening and Spoken Language Specialist Auditory Verbal Educator. She is a co-founder of the non-profit, Listening Together, which aims to support parents & professionals around the world who are working with children with hearing loss.
In episode 9, Uma shares all about…
- Three profiles of potential of kids with hearing loss: Catch Up, Keep Up, Move Up
- Why children in each profile continue to benefit from support throughout their educational careers
- What professionals should be working with children with hearing loss in the mainstream
- How should multidisciplinary professionals be working together to support kids with hearing loss
- How best to advocate for your child with hearing loss at their IEP meetings & what to advocate for.
- How reading literature like Harry Potter can support your child’s education.
- And more!
Uma has co-authored an article on this topic with Mary Ellen Nevins on this topic entitled, “Guiding Principles and Essential Practices of Listening and Spoken Language Intervention in the School-Age Years”. You can locate that article here.
Where to Find Uma
- Via email at uma.Soman@Carle.com
- Follow her on Facebook as Uma Soman
- Follow Carle Auditory Oral School on Facebook and Twitter
- Check out Listening Together at listeningtogether.com, facebook.com/ListeningTogether, or on Twitter and Instagram @ListeningTo_DHH
Show Transcript
This episode was edited by John McCortney.
T: Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. We’re your hosts. I’m Tatum Fritz.
J: And I’m Jessica Brock. Last week, we spoke with Andrea Marwah about a child’s rights in a public education system. Our discussion last week focused on the Individuals with Disabilities Education Act and the IEP process. Today we will have Dr. Uma Soman on to discuss supporting children with hearing loss in mainstream school settings. Often on the show so far our discussion is focused heavily on the early intervention and early education years. But today Uma will be discussing the need to support children throughout their education. We’re so excited to have today’s guest on the show with us. Welcome Uma.
U: Thank you all. Jessica and Tatum, it’s a real pleasure to be invited to this awesome podcast.
J: Thank you.
T: We’re so excited to have you on, and as a quick interesting fact about Uma for our listeners, Jessica and I actually first met Uma as graduate students at Vanderbilt. She taught one of our favorite Intro to Hearing Loss classes, and she also was the first person to introduce me to the listening and spoken language world. So while in your class Uma, I really enjoyed hearing about how you found yourself pursuing a career in the hearing loss field. Would you mind sharing more about the reason you first became passionate about working with children with hearing loss.
U: Sure Tatum. So I feel like this career was years in the making. I was seven when my younger sister was born and soon after that diagnosed with hearing loss. Over the next three years our life as a family changed completely. We relocated to our hometown from the Middle East. My mother went back to school to learn more about supporting a child with profound hearing loss who was learning to listen and speak 30 years ago in India, and it started a series of attending therapy sessions with my sister, sometimes being dragged along and sometimes resenting this whole thing. And I definitely went through a patch when I wanted nothing to do with deafness hearing aids anybody but watching my sister go from being completely dependent on a few words she knew, to very fluently expressing herself was quite remarkable. It was lovely to see what an empowered parent supported by a knowledgeable professional can do for a child’s trajectory. So my sister, my mother, my father– who supported us by doing all the things that needed to be done while they were doing these other things are my inspiration and they continue to be what keeps me going in this field
J: I love that story. Your mom sounds amazing and you are a good big sister.
U: She is! Thank you.
T: Let’s go a little bit more into Uma’s background. So Uma has a master’s in deaf education from Smith College, and she recently received her PhD in Hearing and Speech Sciences in 2017 from Vanderbilt University. She has previously worked as a teacher of the deaf at the Clarke School in Jacksonville, Florida and for the Mama Lere Hearing School at Vanderbilt. And then she currently works at Carle Auditory Oral School, which is in Urbana-Champaign, Illinois, where she supports students and their parents as they transition into their mainstream schools. So Uma would you like to elaborate a little bit more about the programs that Carle Auditory Oral school offers and your role at Carle?
U: Sure, so I am the Outreach Coordinator at the Carle Auditory Oral School in Urbana-Champaign. We are only two hours south of Chicago, but it’s a world away from Chicago because we have more corn fields than buildings in our little town. We are an Options School like Child’s Voice and like Clarke Schools in Jacksonville, which means that we support children and families who are deaf or hard of hearing and are choosing a listening and spoken language option. So we have an early intervention program. We have a school program that goes from the toddler class to third grade. And what’s really lovely is we are a one-stop shop. So in the same building, we have our otologists, we have our audiologists, we have our early interventionists and we have our teachers and enrichment teachers and our OTs and PTs and me in the same building which makes it I think really helpful for parents, coming and receiving services over those early years. So my role specifically is supporting parents of children who are getting ready to transition out of our specialized listening and spoken language program into the public school or the private school. That happens through me supporting parents through the IEP process, parent education, academic evaluations of the children, but then also connecting with the receiving school and working with the professionals there and preparing them to best support the child that is coming to them. I also do some research for Option Schools and I’m the chair of the research committee for Option and manage– help manage the Listening and Spoken Language Data Repository. And then my I also do some research for Carle looking at long-term outcomes of children who are deaf or hard of hearing. And we have a new project looking at efficacy of tele-tutoring for school-aged children who are deaf or hard of hearing. And then in my free time, I also do listening and spoken language specialist certification mentoring for multiple staff members in our program.
J: we’re very fortunate that Uma had time to record the us today. You’re very busy and making a huge impact on all of the families that you work with both in Urbana-Champaign and beyond and it and you know, speaking of beyond, you also co-founded the organization Listening Together in August 2017. So Uma, would you mind sharing a bit about Listening Together’s important mission?
U: Absolutely. So Listening Together comes from– it’s a joint adventure between me and my co-founder Ahladhini Dugar, who is a teacher of the deaf who lives in California who also went to Smith College. So we share a very similar background and she too is from India. So Listening Together started out as a way to support parents and professionals around the world who were working with children who are deaf or hard of hearing. This is true even in the US– but for many countries in the world access to services, resources, location, are what determine whether a child is going to have good outcomes or not. And we really want to start sort of equalizing the field. Thanks to the internet you can talk to anybody anywhere and share what you know with them or listen to what they have to say. So that is what is the foundation for Listening Together. Our mission is to support education and rehabilitation of children who are deaf or hard of hearing around the world through parent empowerment, professional development, and public awareness and we are going to be a non-profit come middle of 2019.
J: Amazing, really cool.
U: So that’s my weekend gig.
J: I feel like you need like ten weekends to accomplish all of that.
U: I do, I started waking up at 4:30 and going to bed at nine and that has really helped.
J: Uma I also go to bed at nine if that makes you feel better!
U: Good for you! We’re teachers, we’re therapists. We work with little kids. Staying past nine is not what we were meant to do.
J: Correct? Correct.
T: Yeah that is around my bed time as well.
J: Okay. So before we jump into the episode, we like asking our guests every week for a story from the past week. It could be anything– something cute, something funny, something heartwarming– does anything come to mind Uma?
U: Yes very much so. So actually there’s several I can choose from but this is the one I’m going to go with. So as I mentioned I mentor teachers as well as SLPs in the listening and spoken language specialist certification process at Carle. I was observing one of the SLPs and I watched her session with a three year old who is new to our program and we’re still discovering things as we do with little friends. And after I watched her video I commented on how engaged the child was with her throughout the session and they were both having fun, and she replied by saying that they had now established a good relationship and it was becoming easier to work with this child. I just loved that comment about the investment and engagement and relationship building on the therapist’s part because I am a firm believer of the James Comer quote, “No significant learning happens without a significant relationship.” I think that is at the heart of what we do as interventionists, whether we are working with families, working with children, or working with other professionals and I try to practice it and preach it and model it, and this comment from my mentee about how she had invested in building a relationship was just so joyful and heartwarming and it made me very happy.
J: I love that.
T: Yeah.
U: It makes a big difference when you start thinking about every interaction as being one of relationship building. It’s completely changed how I do therapy.
T: That applies so much to like our early intervention caseload too.
U: Mhm, yeah.
T: I’ve just started with several new families back in September and I feel like I finally hit good rapport with them and it takes time, which is good to remember at the beginning.
U: Yes.
T: Okay, so why don’t we head into our main discussion. So just before we get started as a note to our listeners Uma has recently co-authored an article this past year that delves into the need to offer support for children with hearing loss throughout their education, special considerations when it comes to providing the support, and advice on how best to provide the support. So today we’ll be diving into this topic further with Uma, but we may end up referring to this article throughout which we will link in our episode show notes on our website if you’re interested in reading further. And then I meant to ask you it’s okay to link it, right?
U: Absolutely.
T: Okay, so we will link it in our episode show notes.
J: Okay. So today we’ll be talking about support in the mainstream. Uma, why don’t you start by telling us what the mainstream is, what it’s not, just give our listeners sort of a brief definition.
U: Sure so this is a tricky question in some ways because what is the mainstream? Are you in the mainstream when you are alongside your hearing peers? Well, then what about programs that have children who are deaf or hard of hearing and children who are typically developing and don’t have hearing loss? So for the purposes of this conversation, let’s define mainstream as when you are going to a school or an educational setting that any other child would go to. So let’s go with that. So a non-specialized program would be the mainstream.
T: So something that is different than going to like a listening and spoken language program at Child’s Voice or Carle Auditory.
U: Yes, I would agree with that.
T: That is kind of how I think we talk about it with our families a Child’s Voice too.
U: Okay, good.
J: All right, so, okay. So when we say kids are going to the mainstream does that include therapy and special education services and you kind of just touched on this but just to clarify.
U: Yeah, so in my mind, it does include therapy and special education services in the sense that children might be receiving these services as supports and not as their primary educational intervention. So you might have a kid who is in the fourth grade who spends time in the classroom every day except for 30 minutes when he walks down to see the resource teacher or the teacher of the deaf, the itinerant teacher, who’s coming in to work on some very specific language targets, some academic vocabulary, or this child goes to a speech language group or a social skills group with the speech language pathologist who is working on specific pragmatic skills that are impacted as a result of the hearing loss. So it depends on the needs of the child and I’m sure you all have heard from Andrea how services in the public school system have to be individualized to the child’s need. So you could be in the mainstream and still receiving special education support as well as related services, but you’re attending a program that is not a specialized program.
J: I think we’re we’re kind of going with this and where you’re kind of going with this Uma is that the mainstream is not just a general education classroom with no support even if kids are doing pretty well, it’s not uncommon for kids to still be receiving therapy once they’ve sort of hit this goal of like “getting to the mainstream.” You know, I’ve worked with some families who aren’t from the states and they move here and they don’t even really understand the education system at all. So we say let’s get to the mainstream, get to the mainstream and I don’t want people to think that that means that their kiddo is ready to be in a general education classroom full-time without any extra support.
U: Right, and I’m so glad you were saying this because I recently talked to a family who said, you know, we thought when we were done at Carle, we would be not needing any more support and I had to talk to them about needing support, (a) is not bad and (b) your child needs support to keep up, not because your child is behind, but to ensure that your child continues to move forward, and I think that is an unfortunate misconception out there, success equals not needing any support, and I don’t want parents to think that they haven’t done everything they could or their child has not been quote unquote successful if they continue to need support. The way I see it, yeah sure, if I’m trying to lose weight and I hit my goal weight, I still have to keep working out because otherwise the weight’s going to go back again. Continuing to work on areas that you might be at risk for, it’s not bad. It’s good planning to make sure you continue to maintain your trajectory.
J: I like that analogy.
T: So one of the goals that we’re always talking about with families both in the early intervention, and then also with the families that are in a specialized educational program like Child’s Voice is getting their kid to the mainstream. Why is this the goal? Why should this be the goal for our kids?
U: So I don’t even know if this should be the goal for our kids. I think we start with what are the family’s desired outcomes? Do they want their child to go to a program that the child’s siblings, neighborhood friends are going to? If that happens to be where the quote-unquote mainstream is, then that is a good goal to have but again, I think that this goal comes from the idea and the hope that the diagnosis of a hearing loss doesn’t prevent a child from achieving his or her full potential. It just starts with a detour of sorts. And again, if going into the mainstream is what helps the child achieve his or her full potential then mainstreaming should be the goal. We do see kids at Carle and this is one of the things I love most about my program is that we meet children and families where they are. For some of our friends, there’s a lot going on and a mainstream program or even more than two hours in a general education setting is not realistic in terms of a long-term outcome, but the parents’ desired outcome is for the child to be independent, for the child to express needs, and wants, for the child to be able to interact, for the child to be happy. And sometimes that’s the goal that gets achieved in the mainstream. Sometimes it’s not. But the goal should be to help the child reach his or her full potential. And for many that is being in the mainstream. So that was a detour of an answer.
T: You make a good point to like meet families with where they are and also like you said earlier it’s always individualized. So we have to individualize the goal to both the child and the family.
U: Because honestly at three a child might be doing really really well and everything indicates that we should be kindergarten-ready by 5, and then something comes up ,a new diagnosis, something is revealed about how the child is learning and we have to adjust that plan– still keeping the same desired outcome of independence and reaching one’s full potential in communication. But we might have to slightly change that plan as we move forward in. This is one of the questions I get many, many times especially as we do IFSP to IEP transition meetings. Do you think my child will be ready for first grade? And I have to say well based on what we have seen so far, I don’t see a reason why that might not be the case, but we have to look at the new milestones as they come up, the new expectations as we put those on the children, and how your child responds. We are going to do everything we can in terms of the quality and quantity and intensity of the listening and spoken language intervention but we have to take into account what the child is bringing to the table.
J: Yes, so with regard to that, how do you know when a kiddo is ready to enter the mainstream? When does that happen? And who decides that?
U: So at Carle we use a an interprofessional practice team approach. We are very good at maintaining data and progress monitoring of the children who attend our program. So every six months, every year for sure, there is discussion about progress, about are we on track to meet this child’s desired outcome and generally rule of thumb, nothing, you know not set in stone, when a child has age-appropriate scores between 85 and 115 in a majority of the domains that are necessary for being successful in a mainstream setting we say they’re ready. However, we have also had friends in the recent past who for a variety of reasons– late ID, traumatic brain injury, adoption, and you know loss of the first two years of good communication skills, have not caught up by the time they graduated from our program, but they have made progress towards catching up and for them you say: Okay, you are heading out. These will be your needs and this is what we need to talk to the receiving school about to ensure that they are ready for you to enter the mainstream. Does that make sense?
T: Yeah, it does. Yeah.
U: And then it has to be a team decision parents who are leading this team, very similar to how we do it in early intervention, even if the child is 7 years old.
T: So you mentioned an interprofessional team– Who is on that team?
U: So for us, it’s the teacher of the deaf, who is the lead teacher for the child. It is at least two speech language pathologists because every child in our program sees at least two SLPs, the audiologist’s recommendations, our director, and then sometimes me if it’s a situation where we need to really think through a lot of things. If it’s a straightforward decision, then I’m not really that involved in making the decision. And parents obviously parents are the ones who are guiding all this. And at our school the Parent-Teacher meeting in October includes questions about transition. What are your plans? What do you see as next steps for your child and so on. So if we need to transition in August of the following year, we’re starting the conversation a good 10 months in advance.
J: Yeah, I think that’s so important to have families really be thinking about that. Even if it’s 10 months in advance a year in advance, it really drives, I think, a lot of families to to have that goal in mind and to know why they’re doing what they’re doing in terms of–
U: Right right and for some it comes as a surprise. What do you mean you’re saying my child is ready to go? We end up being a safe space for the families. They’ve been with us since the diagnosis and now we’re saying, okay time to leave the nest, and that can be challenging for some, and we’ve had to do this in the recent past where we’ve said we’ve addressed the impact of hearing loss, but there is definitely more going on and we need to start looking at what other services and supports your child might need as they transition from this program and that takes time because you guys know– you guys are early interventionists, you can’t just lob information like this at the parents and have them react super fast. They have to have the time to think about it, to come to terms with it, and to develop an action plan on their own because again parents are the ones who are leading this team.
J: Definitely. Yeah, we’ve had some of those discussions hmm. They’re tough but important and
U: Yes.
J: they do take time though.
T: So in the article that we referred to at the start of the discussion that you’ve recently authored with Mary Ellen Nevins, you identified what you called three profiles of potential that children with hearing loss may have upon entering the mainstream and you guys had a Catch Up profile, a Keep Up profile and a Move Up profile. And while reading your article I felt like this was a good way to think about like the families and the children that we work with. Could you elaborate more on those profiles and why they might be helpful for professionals?
U: Yes, I would love to. So we have presented on this topic recently and I’ve gotten really good feedback. We’ve started using this language as a school and we have seen that the parents like these descriptors in a way, so to come to the profiles: We know that hearing loss impacts a variety of domains including listening, spoken language, vocabulary is a part of it, syntax is a part of it, receptive, expressive, so all aspects of language– speech, sometimes social skills, sometimes social-emotional development, literacy, cognition, academics. So there are multiple domains that are impacted by hearing loss. And the goal is for children to have age-appropriate skills on most standardized assessments. That means a score between 85 and 115. Now if a child has the score of 85, I’m not jumping up and down and saying, “oh, yeah age appropriate skills” because that’s on the low end of average or age-appropriate. But generally that’s the ballpark that we’re aiming for. So Keep Up kids are children who are scoring within that 85 to 115 within the average range on all the domains.
So one thing to remember though is standardized tests are only a snapshot of a child’s skills. If you start testing that kid on a checklist-based assessment you might see some holes. You might see some gaps. So keep that in mind but these are the kids who are on the Keep Up trajectory. They are not behind but they need to continue to develop at the same pace as their typically hearing peers in the classroom are. So that’s Keep Up. Catch Up our children who for whatever reason, generally one or two factors that impact where they started, it could be late ID. It could be late access to hearing technology, or they might not have found the right people to help support their child, and they are kids who need to make up some ground. Demonstrate more than a year’s progress in a year’s time, which is not easy, but we have kids doing that and are catching up. If you continue with the intensity of services, if you continue with the intervention the way it is, these kids will eventually catch up and then become Keep Up kids. And then the last category is Move Up. These are kids who have multiple challenges or multiple factors impacting their learning. And we don’t want to give up on these kids. We don’t want to say, “Oh, you know you have hearing loss and autism and we can’t really do much for you.” What we want to say is, “Let’s figure out how we can help you move up. Move up so that you can be independent. You can be a strong communicator in whatever way works best for you. You can express your needs and wants. You can be happy.” So the Move Up kids that we see are often children who are making just about a year’s progress in the year’s time, but are not catching up, but are not stagnating either. We don’t want them sort of at the same level for five years in a row. That just means now they are five years more behind than they were. So the profiles of potential are based on growth trajectories. Just depending on the slope of those trajectories and where they are on the graph that says where your scores are. So when professionals are talking to parents about this, I think plotting out scores on a graph or having a bell curve that shows the average range and shows where the children are over time is a good way to approach this topic. And this also helps talk about desired outcomes again, because if a family is saying we want our children to be ready for kindergarten at five… Okay, then what do we need to do now to catch up to that. These are profiles that can help you have conversations about better hearing technology use, better attendance for early intervention, better attendance for preschool, more parent engagement, and all the things that go into helping a child be a strong listening and spoken language user.
That was a long answer.
J: I was I was thinking as you were talking about the three profiles how relevant this is to professionals in terms of how we’re communicating with parents. But also these are questions that parents can be asking if they’re not sure how their child is doing and where that their child’s, you know trajectory is, this is really like accessible language for parents to be using and asking in IEP meetings and with you know whoever’s on their team.
U: Right.
J: I think that those those terms are just really easy for parents to understand and use in situations where we’re also throwing around like standard scores and percentiles and things that aren’t as clear. So I like that a lot.
U: Yeah, so I’m going to an IEP on Monday and this is a friend transitioning from an IFSP to an IEP with several different challenges, and I was talking to Mom about okay–
What are the long-term goals? How do you know if the IEP goals are going to be good goals. She’s like, I don’t know. I’m just gonna listen to what I’m told. And I’m like no no, I don’t want you to have the professional expertise to judge whether every objective is a smart objective, but I want you to have a sense of, is this going to help my child catch up by the time he is in kindergarten? And it has really been In some ways empowering for parents to say if we keep doing what we’re doing can we catch up? If we keep doing what we’re doing will my child keep up? What should I do to help my child move up? So it has been really good to even sometimes, you know, pick objectives. As professionals when we’re sitting together figuring out what IEP objectives we should be having, thinking about what these goals are, and what these trajectories are, have been very helpful.
T: I like it too because it’s such positive language and instead of focusing on like you’re falling behind or you’re not getting there it really focuses on like what is the next step like, how do we get there?
U: Absolutely.
J: So when we’re thinking about how how we get there, wherever we’re going next. There are a lot of different professionals that can be involved in that process. Do you want to expand a little bit on who is supporting children with hearing loss in the mainstream?
U: Sure, so I have a list of my first choice would be and then I go down this list of let’s see who’s available. So, as you know when I was at Vanderbilt, I was still providing some outreach services to rural counties around Nashville. And that is when I discovered this list that I had in my head. I would love for every child who is deaf or hard-of-hearing to be supported by a teacher of the deaf– an educator of students who are deaf or hard of hearing in the modality that the child is using. So if this is a child who was using American Sign Language, I truly hope that the professional supporting this child is also a fluent sign language user. If this is a child who is using listening and spoken language, I hope that the professional supporting this child has training and expertise in developing and supporting listening and spoken language.
What is special I think about educators supporting school-age children is as teachers, we not only learned about language development and speech development. We also learned about literacy. We also learned about math instruction and science instruction and understanding how language guides all of this is really really important.
So in my current job, I see one two, three, four, five six starting in January. I currently see five children who are in the mainstream and I’m basically supporting them through academic tutoring for a lack of better word. The other day we were doing the math worksheet and the direction was– this is a fourth grader. And we were doing a math worksheet that said: “Write the first 10 multiples of 8.” And the child had written: “8×10=80.” And I said, okay tell me more how this direction led you to “8×10=80.” and she said, “Well, it says ‘First, multiply 8 by 10.” Now I was like, oh the word multiples and multiply aren’t the same thing. You clearly have this math concept, but because of the deficit in the language underlying this math concept you are now struggling with math. This is what an educator is and should be trained to do compared to any other person on the team. So I would love for every child in the mainstream to be supported by an educator– I’m not saying they have to work with a child every day for an hour. Support can take whatever form it needs to take based on the needs of the child but having an educator involved in this team is important. A speech language pathologist who can help with development of listening and spoken language and even social skills is going to be important. Those are my two most favored people that should be involved on a regular basis. We also want an educational audiologist to support children have access to these, and then, you know, then you come to a point where you say, “Oh and I would like a unicorn and a rainbow.” Because these people and these teams don’t exist in all public schools. So at that point you say, “Okay, who do I have on this team who understands language, who understands teaching?” And for many children we have built incredibly strong teams by inviting a reading specialist, sometimes an English as a second language teacher because they understand developing language and vocabulary. Sometimes a speech language pathologist who has not worked with children who are deaf or hard of hearing but has worked with children who have specific language impairment. And of course a special education teacher who has training in working with children with mild-moderate disabilities as well as severe-profound disabilities and those people, because they have a common set of knowledge with some training and consultation can be excellent team members for a child who is deaf or hard-of-hearing.
J: Excellent.
U: I’ve decided I’m not going to give up on any child or any team because it doesn’t have the perfect set of team members. I believe that with a little support and knowledge development, many professionals in the school can be prepared to support a child who is deaf or hard of hearing as long as they continue to get coaching from somebody who is an expert in listening and spoken language development.
J: It’s got to be tough. I’ve never worked in a rural setting but I can imagine that the lack of providers is a battle that a lot of people are fighting, in trying to become more informed and using the people that you have. I love that phrase that you just said which is, “I’m not ever going to give up on a kid just because the dream providers aren’t there.”
U: Which is partly why we’re exploring the option of tele-intervention and tele-tutoring for school-age children. Tele-intervention in the birth to three population is definitely out there and gaining strength, but there isn’t a lot on children who are deaf or hard of hearing who are school age and continue to receive support via tele-intervention and so far the study is going well. Last month, I spent an hour doing ninth grade algebra via tele-intervention. I felt so smart that day.
T: That would take a lot of prep work if I had to go back to figure out how algebra works. One thing I think we do face even in the city is finding, I know you mentioned like teachers of the deaf who have expertise in like the modality that the child is using, and I think that we run into that even in non rural or urban areas.
U: Yeah, that issue of shortage of trained professionals is in rural, urban, national, international domains.
J: Uma it seems like you have a lot of extra time in your schedule. I feel like you could just see all the kids in all the countries.
U: Yeah, exactly. So it’s funny that you say this at one point I was considering, like do I start seeing kids you know on the weekend? These kids, these parents who are texting me from India saying “hey, what can we do?” And as Listening Together we decided that Alhadhini would focus on the parents, but I would focus on the professionals. So we do online courses for professional development. Starting in 2019 we’ll have free webinars because the idea is if I work with one therapist one teacher and they work with 10 students it’s better than me working with one student. So building capacity is a part of every job I have throughout the day, throughout the weekend.
J: That’s so cool. What you’re doing is amazing. We’re gonna compliment you like 15 times throughout the rest of the episode.
T: I don’t understand how you keep your schedule
U: it’s crazy. I don’t have a clean house. Let me say that and sometimes my laundry is unfolded but you know this this work truly is life-giving. Why do you think I’m able to wake up at 4:30 and do this? It’s because it’s fun. And it’s rewarding and we get little videos of kids in the therapist saying oh my gosh I tried that song you said and mom broke into a smile and it was just so lovely and I’m like, yes, this is why we wake up at 4:30 and do what we do. But you know, I don’t want people thinking, “Oh you have to do a lot to you know, be doing it well.” Every interaction counts, every interaction that you’re having. Even if you’re only seeing two kids, and you are an SLP out there in the school who only has two children who are deaf or hard of hearing on your caseload every interaction you have counts. So don’t feel like you have to be crazy like me to wake up at 4:30 to do good work. I’m sure you all are doing good work. Look at you Jessica and Tatum, you are spending your quote unquote free time doing this excellent podcast. We’re all just contributing to the larger good.
J: We want these kids to do well and we want them to be happy and that starts from the day they’re born all the way up through the rest of their lives I mean we work with them just from birth to three, but we know that what we’re doing is sort of laying a foundation for the rest of their education system and it’s cool to talk to you about that because we don’t, we don’t get to see that very much with older kids.
U: Right, there is this idea of lifespan perspective intervention in special education. So I heard Dr. Ann Turnbull several years ago– must have been 2012– at a conference and she was talking about how as educators, as interventionists, we should be thinking about the special education intervention we do today, birth through 21, should last these individuals, should prepare them for the next 60 years of their life. So I’m not just working on making sure that the fourth grade math worksheet is being done. But how does this support you when you are out in the world as an adult?
And that was a little overwhelming to think about at the beginning, but it’s made my Intervention choices much easier. The other day– I work with middle schoolers and high schoolers so I get a good glimpse into the drama of middle school and high school and the other day there was definitely a conversation where I was like, I am not trained to have this conversation with the teenage girl, but that is what needed to happen because for this child she doesn’t yet know what the social norms of telling somebody that she likes them are. This is what was weighing on her mind, and she wanted to know what the best way to do it would be. And I said, “well, this is something we talk to parents about. I’m sure Mom and Dad would be happy to have this conversation with you.” She said, “Well I’m not going to talk to Mom.” I’m like, “No no Mom is the one you talk to about this.” And she was like, “Really you think Mom will talk to me about this?” And I know Mom. Mom is awesome. So I said to her I said, “Well if you are feeling nervous about it, how about I start the topic and then you and Mom can continue?” And she said “Okay you tell Mom I want to talk to her about this.” So okay, so I did that and Mom, you know, beautifully just took that and said, all right, this is a great question and conversation. Let’s involve Dad in this and we can talk about it over dinner. And I am so glad that in the moment, I didn’t say to her, “Well, that’s not what we’re talking about. Let’s focus on this math worksheet.” But we had the conversation which you know, that was 15 minutes I hadn’t planned that’s going to set her up for life.
T: Yes.
J: That is so cool.
U: Oh, yeah, I’m having conversations of all sorts these days.
J: So besides dating advice, what other challenges might children with hearing loss face in the mainstream?
U: I think the big ones I mean sure academic challenges could be something they experience but I think the even bigger ones are about identity and social skills and social emotional development and self-advocacy. I want to make sure for many children when they go into the mainstream they might be the only child with hearing loss in their school. And that can be a challenging situation. Especially I mean teenage is all sorts of messed up anyway, you add a factor where you start thinking, “Oh, I might not be as same as everybody else or as smart as everybody else or as capable as everybody else now if you’ve added a whole other layer of concern. I used to do a social skills group while I was at Vanderbilt and on a questionnaire some of the children– superstars, right you– they could have been poster children for Option schools, and they said that they– only THEY have difficulty with homework and all their difficulties are related to their hearing loss, and I was like, “What? You think nobody else struggles with homework?” They’re like “No, just me because I wear a cochlear implant.” It’s like, “No, who told you that?” They’re like, “Well, there’s nobody else with the cochlear implant in my class.” And I have been very aware of not just focusing on the academics but monitoring the social-emotional development, social skills, and self-advocacy skills of children out in the mainstream and I would urge parents who are listening to this to seek opportunities to help children connect with other children quote-unquote like them. And if professionals can facilitate that that would be lovely.
J: I recently started with a family, they have a baby, they’re totally new to the world of hearing loss, and they’re in early intervention and they’re getting audiology support and they’re doing all the right things and they’re very nervous and I saw them last week and I asked them how they were doing and they said well really good. We spoke with like a friend of a friend who has the same diagnosis as our daughter, but she’s like in her 20s, and she just put us at so much ease and like the relief on their faces… It warmed my heart. Because they because so many families have never– kids and parents– that just aren’t exposed to other children with hearing loss. And that sense of community is so important and knowing that they’re not alone. So that was a cool moment.
U: Yeah, and you know shout out to Illinois Hands and Voices who does a lot of things for parents. Parents supporting parents as well as events. I know Child’s Voice has alumni stopping by and hanging out and I think that goes, I think that goes a long way.
J: Do you want to talk about like professionals working together?
T: I do feel like yeah, I think we’ve talked a lot about like well, yeah what kinds of professionals can help kids in the mainstream. Um, but I know that like professionals yeah writing is very important and from our end of things like we’re in the clinic or in our kids’ homes, sometimes it’s it’s difficult for us to like easily collaborate with some of the– our kids’ other professionals that are on their IFSP team or if our kids are older and they are in the mainstream for like their school teachers… Like how do you best recommend for everybody on the team to work together to support their kids?
U: I’m a big fan of Google drive or group text or whatever it takes to have everybody literally on the same page. And here’s what I’ve discovered. Some members of the team are more active participants in the group conversation, whether it be a document on Google Drive or group text, but everybody is now receiving the same information and even that can change what collaboration looks like and just keeping each other in the loop can be a really good you know system because it– you’re right. It’s very difficult to find the time for all team members to get together and talk– that just doesn’t happen. So, you know use technology to your benefit, see if there is a way you can communicate without needing to be in the same place. Zoom calls, even if you have 10 minutes once a month set aside to talk about a kid, that would be really helpful. But it is hard. Like there is there’s no easy way to do this other than to say this is important, we commit to this and we will do this.
J: I like that like whatever it takes. Yeah. Yeah texting or Google Drive. I like the Google Drive idea. I feel like I get stuck into like I fax the report to the audiologist and I call them if I need anything. I feel like we can get a little stuck in our own routines and maybe like my system is different than a school district’s system or my system is different than another therapist’s system and being willing to adapt your system to meet other people where they’re at.
U: Yeah. Yeah, and so like for certain families in India, we just have a WhatsApp message which is again a group text for families. Here at school we have our director Danielle Chalfant is amazing at making schedules. She’s come up with a system that once a week or once every two weeks, every person on the child’s team can sit down and talk for 15 minutes while kids are at recess. So at least every two weeks every child is discussed because sometimes what happens is you talk about the children with the most needs and the ones who are doing “okay” don’t get discussed. So this system ensures that maybe it’s only 15 minutes once every two weeks, but everybody who needs to be thinking about this child’s progress is in the same room at the same time, focusing on nothing but this child. And there is no room for cute stories or jokes or anything like that. You talk about the child, you talk about the progress, you talk about the concerns, you talk about the next steps. And it’s difficult, but Danielle has definitely made it work.
T: That’s awesome. I like what you said earlier too about if you do have a group text or oftentimes I feel like in early intervention at least here in Chicago often we have group emails with the IFSP team and sometimes it gets frustrating when like certain people don’t respond or I know like even myself when I have less time, I feel guilty about my lack of response, but I like what you said that even just having it set up if someone is active on that email or on that group text at least like the information is getting out there.
U: Right? Right.
T: It relieves the pressure a little bit because I just know this fall… I haven’t — it’s been a busy fall and I haven’t been great about any of this. That’s nice to know like right like you don’t always have to be on the ball if someone else on the team is on the ball.
U: Right so, you know and this doesn’t have to stop when the child goes to school this can continue when the child goes to school where you again have a group text or group email with the parent as a part of this conversation as well. So they know what’s happening in school and they know what’s happening in tutoring and they know what’s happening in therapy and they can connect what’s happening at home. The other day I texted the parent and then added to the shared Google drive with my collaborators in the public schools, saying “hey, I noticed that when this child goes through her read aloud text and underlines every time she has to say the final “ss” sound s and she has it underlined ahead of time she can say it in connected speech reading out loud without any errors or needing any prompts.” Otherwise, this kid will sometimes act like she doesn’t even know what an S is, what sound it makes. So even just that so now the SLP is going to make sure that happens in the general education teachers going to hold her to it. And the teacher of the deaf that she’s working with is going to hold her to it. It’s just it doesn’t have to be big it can be little things but they just need to be communicated and that way parents don’t feel like oh I was so involved in early intervention and now I am all but abandoned as we’ve gotten into school.
J: Yeah. I feel like a lot of our parents experience that and you know Tatum and I both work almost primarily in early intervention and it’s so family-focused and about educating the parents and empowering the parents and then many of our kids will go to our Child’s Voice school and even then the parents are pretty involved and then they go to the mainstream and it’s a completely different system and people don’t know hearing loss as well there and parents do feel like they have to advocate for their kids and it’s a little– it’s a big shift from early intervention into the mainstream or into, you know, the preschool program. I like this idea of making a concerted effort to include parents in these conversations that I think a lot of times we don’t think to. We think this is just “oh I need to tell the teacher about such and such” but parents are and should be involved in all of that so I like that.
U: One of the things I have one of the reasons I’ve become even more aware of this is we do see we are seeing more children who have experienced adverse childhood events (ACES) in the form of trauma, abuse, adoption, foster care, custody issues, domestic violence. You name it, we are starting to see it. And knowing– looping the parent in can sometimes give you insight into why the child might be doing what he or she is doing or acting the way they’re acting. Thankfully there is a greater understanding and awareness of trauma-informed care and trauma-informed education now than there was even five years ago and I think parents are providing this crucial perspective in how children are learning.
T: Yeah. Yeah, I think that that’s like a great point. I feel like this year at child’s voice that has been like a — not necessarily trauma, but just considering like the home environment or things that might be influencing a child’s outcomes that might be going on at home and oftentimes when we are having these discussions at Child’s Voice– I just know where I don’t know where often I just hear teachers often left like guessing what happens at home, but like that’s why keeping the parent in the loop the whole time is so important because like we don’t need to be guessing what’s happening at home in most situations we can be talking with the parents, keeping them involved and hearing from them what might be going on outside of school, too.
U: Yeah, definitely.
J: Let’s move a little a little bit away from this and talk about the kiddos who you call like the Keep Up kiddos who may be demonstrating average language and speech skills on formal testing and their families sometimes have a tough time getting services approved on their child’s IEP because because scores might reflect that “oh, they’re doing fine,” but we know that they still might need the extra support. So do you have any suggestions for families on how they continue to ensure that their children have the appropriate support?
U: I think it comes down to talking to the team of what the existing support is doing. So if the if the parents and the team the educational team notices that the child is doing as well as he or she is because they have the support, they’re not they’re going to work to not take away the support, but public schools are often overburdened with the amount of services they need to provide. So if anybody isn’t showing massive deficits that’s not where they want to focus their attention. Unfortunately, I do think it comes down to parents advocating for what the role of that support is, to show the school that this needs to continue. I’m sure by now listeners have heard from Andrea about how to continue monitoring related support for children who are on a Keep Up profile.
T: I hear you saying like how parents can best like Advocate like through like with the IEP team and I know we talked a lot about talking about like like really emphasizing that like the kid has gotten here because of the support and sometimes that is successful in getting services approved in an IEP and sometimes it’s not sometimes their kids are still not either even occasionally like in the city even found eligible for an IEP or sometimes services that are put on the IEP are not quite what we would like in a dream world. So if that happens even if the parent has done their best to advocate, were like, what do you suggest a family can do about getting maybe services elsewhere or or anything else to make sure that the kid is still keeping up even if they haven’t gotten the IEP services that they would like, right?
U: So two– there’s two things that come to mind. One is look for you know sources like Child’s Voice or Carle that can support your child’s educational development. We would– the tele- intervention piece for school-age now– feel quite comfortable supporting a variety of children, even if they can’t come to us. So find innovative ways to get the support you need.
The other thing I would say is watch very closely how your child does on the homework that has been assigned. Watch where the issues are coming from. Is the child struggling because they didn’t understand the direction? Is the child struggling because they didn’t understand the content? And that will give you some insight in what kind of support is needed. So typically what I see for children in the mainstream who are mostly on a Keep Up profile– Keep Up trajectory is the need for expansion of vocabulary and understanding of background. So I’m reading a chapter on the Civil War and Industrial Revolution and Westward Expansion with one of my 7th grade friends, and they’re just is a lot of, you know, “I have no idea what you’re talking about. What do you mean people went to Oregon?” Well, a long time ago nobody was really going that westward and they wanted to– they needed to go and so on and so forth. Concepts like “fleeing religious persecution”, the child might be able to decode it and even understand what the word means but the concept behind it is was is what gets tricky when learning in the classroom, so pre-teaching or exposure to the concepts that the child is going to learn can be something parents can do just as a part of their routine to help the child keep up.
So one thing that I would encourage all parents to be thinking about as their children are in middle school and high school, even in elementary school, is to ensure that you are reading with them. New research suggests that reading out loud with children up to eighth grade has been proven beneficial for language development, comprehension, as well as development of social emotional skills. For a long time we thought: we read to kids until they can read for themselves. But new research is showing that we should be doing it even when they can read for themselves. So I would highly encourage that, not just for the benefits of language and literacy, but because it allows you to talk about topics and concepts that might not be what you talk about in daily life. So for example, some schools are reading– I hope I get the title right– The Boy in the Striped Pajamas, which is about the Holocaust and it’s from a nine year old’s perspective. And you– even though the language is simple you want to make sure that this is something you’re reading with the child. That will become a mirror and a window for their life. Books should be mirrors and windows. This is this is another statement that I love and live by. Books allow children to see themselves in them and books allow children to see other worlds. So as children are out there in the mainstream finding books that are going to resonate with them would be another important way to continue to help them reach their full potential.
J: I like that too because it’s an activity that parents can do at home with kids that is a relatively well somewhat passive activity for a kiddo. Like they– it’s not a test. It’s not a worksheet. It’s not a language target or a speech goal. A kiddo just gets to really like listen and participate in conversation in a less pressure-filled way.
T: Just like thinking back to what you were saying about like like they might understand like the words literally like “fleeing religious persecution,” but not have any like background context for that and sometimes just thinking about that like statement like there’s so many areas that they may not have background context for that it feels overwhelming, but to even think about getting kids to catch up in this area, like having the background knowledge for all the various topics that they’re going to run into at school almost feels like paralyzing and I feel like just as an interventionist and I’m sure like more so as a parent, but when you read books, like I don’t know thinking of like Harry Potter, like there’s so many different themes in that then can then translate into things that might come up in history classes or other areas in their lives.
T: Like you don’t have to think about explaining x, y, and z it comes up naturally when you’re reading a lot of literature.
U: Yeah real story from last week from this week this Monday at 4:30. I was working with a ninth grader who is amazing. I love working with this child and and she’s incredible because she went from Move Up to a Catch Up to a Keep up trajectory now in ninth grade and we had a section about the Odyssey. So Odysseus’ journey across the I don’t even remember all the multisyllabic words we practiced. But one of the things she had to do was talk about the traits of a hero and how they are manifested in the actions of Odysseus, right? I’m just glad she understands all this terminology and knew what the worksheet was asking her to do. So we were talking about this and one of the ones was where Odysseus makes a decision to sacrifice six people instead of risking the lives of his entire group of soldiers and we were talking about that and the kid couldn’t come up with the word sacrifice. So I gave her that vocabulary word. And I said sacrifice and what do you think he was doing it for, and she still couldn’t come up with it. I said, you know one of the terms you might see is sacrificing for the greater good and her eyes just went wide and she said oh my gosh, that’s like from Harry Potter and from the Crimes of Grindelwald and we had this whole conversation and she goes oh, so this has been going on since before Harry Potter.
U: I’m like “oh yeah.”
T: I love that.
U: Yes so this whole concept of greater good and the things we do for it HAS been going on since before Harry Potter, but you’re right. I mean just you know that reading– she had a context for situating Greek mythology, which is huge and awesome. I love it.
J: That’s amazing.
T: Harry Potter can solve everything.
U: Yes I’m a firm believer of that.
T: maybe we can start kind of wrapping things up.
U: Sounds good.
J: Uma, thank you so much for joining us today. We are so appreciative. And it’s been good to chat with you. It’s been a while. So thank you so much.
U: It has been a while. Thank you so much. And thank you for letting me talk about this topic that is near and dear to my heart about supporting students at the school age and as they transition into adulthood, thanks for giving this topic a space on your podcast and creating this opportunity.
J: Sure, certainly. How can our listeners reach you if they have questions about anything that we talked about today?
U: So if you’re living in the United States, please reach me at uma.soman@carle.com. If you would like to know more about the international work that I’m involved in or you know, if you’re interested in listening and spoken language certification, you can follow me on Facebook. I have a professional Facebook account Uma Soman on Facebook. I know that’s very old people to not have an active Twitter or something like that.
T: We’ve been struggling to create our own Twitter presence.
U: Yeah. I am working on that for Listening Together, but I’m like I’m old, I need a 16 year old intern to do this for me. Good.
J: It could honestly be a full-time job.
U: Yeah, so you can reach me at my Carle email. Uma.Soman@Carle.com or you can follow me on Facebook, Uma Soman, or you can check out Listening Together at listeningtogether.com.
T: Okay, we will link all of that in our show notes as well to make it easier for listeners.
U: Sounds great.
J: Awesome. So listeners, we would love to hear your reactions from today’s episode. You can email us at podcast@childsvoice.org and you can find episode show notes and archived episodes at our child’s voice website, childsvoice.org/podcast. On the show notes we include transcripts for all of our episodes. That’s a question that we sometimes get so they are there.
T: Yes, and then be sure to let us know your thoughts on the topic today, so you can tweet at us or contact us via Instagram. We’re both on Instagram a little bit more than we are on Twitter, but our handles are @TatumFritzSLP and Jessica is @JessicaBrockSLP.
J: And if you’re interested in learning more about Child’s Voice, Child’s Voice is on Facebook as well as Twitter and Instagram with the handle @Childs_Voice no apostrophe.
T: Okay. Thanks so much. We’ll see you next time. Bye. Bye.
Child’s Voice kiddos: BYE! Thanks for listening!