ROUGH EDITED COPY

UTAH STATE UNIVERSITY – CASEY JUDD

EHDI 2019 – TOPICAL SESSION 4 & 5 – INTERNATIONAL F
MARCH 5, 2018
10:10 A.M. ET

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	(Writer standing by.) 
>> SPEAKER:  Hi everybody.  My name is Karen.  I'm your moderator.  We have with us Darlene Freeman and Karen Hopkins, supporting parent engagement and reflection in the early intervention journey.  If you need anything, please let me know, and please don't forget your evaluations.
>> SPEAKER:  Hi, everybody.  I'm Karen, as she said, and I'm the director of Statewide Education and Family Services in the state of Maine.  I oversee birth to 21, Deaf and Hard of Hearing services, and I'm also the principal investigator of our grant in this state, so kind of meld those two things together in my day to day work.
>> SPEAKER:  It's working.  Good.  I am Darlene Freeman.  I am the President of Maine Hands & Voices.  I am also a parent guide in our Guide By Your Side program, and I am the QI specialist for the HRSA grant.so, we always talk about journey when we're talking about family engagement and family involvement, and I think along that journey, we have stepping stones, so it doesn't just happen on its own, you have to start out small with stepping stones.  For my family, our first stepping stones involved Karen.  Karen was our first early intervention provider, and, um, we created a foundational relationship that was built on trust and, um, good, unbiased information, even way back then, 22 years ago.  So, I think that's really important, for those first stepping stones for our families, to build those, um, foundational relationships with early interventionists, because that's where the people are that you can go to, um, who you trust for information and support.  Um, of course, our goal is to help families, give them information, resources, and support, so that they will be empowered to continue on those stepping stones and on their journey by themselves, and the only way to do that is really building those trusting relationships in the beginning, as we did.  
Um, as Deavan got older and she went into school, obviously, I didn't have my early interventionist anymore, but I always knew that I had Karen to be able to check‑in with, and I did check in with her all along our journey, sometimes two years would go by and we wouldn't talk, and something would come up, and I knew that I still had her there to check‑in, to make sure that everybody was doing what she felt would be the best interest of our family and for Deavan, because we had that trusting relationship from the start, and years went by, we didn't speak, and now we're back together again.  Um, she was the person that brought me into Hands & Voices, when we were starting the chapter in Maine, and the relationship just continues, but that foundation, those beginning stepping stones were so important.
>> SPEAKER:  And I hired you.
>> SPEAKER:  I know.
(Laughing.) 
>> SPEAKER:  So, this is me and my daughter, Deavan.  I have five children.  Deavan is the baby, she is now 24.  I love this picture of us, because it really defines our relationship very well when you look at it.  Our personalities really are not a whole lot alike, but she does have the passion for, um, supporting families, for working with children who are deaf or hard of hearing, and she is now, we have a deaf/hard of hearing guide program in Maine, and she is now a hard of hearing guide in that program, which is really exciting.
>> SPEAKER:  And I hired her too.
(Laughing.)
>> SPEAKER:  I just hire everybody.  And this is me, this is where I grew up.  I grew up at the base of a mountain in northern Maine, the only deaf child in my family, the only deaf child in my community, and didn't meet another deaf or hard of hearing person until I stepped foot on the campus of Gallaudet University at age 18.  So, when I did that, I realized that's not okay, we've got to change things for families and children and have them meet deaf and hard of hearing adults early.  This beautiful woman on the left is my mom, and between those two things, it just made everything that we do in Maine who we are, and then the other parents that I've been so fortunate to work with, but my mom was my rock, my confident, my best friend, and she was such an advocate for me throughout the years, but one thing that she kept talking about throughout the years is that, that when she stepped foot on the Gallaudet campus, I was thinking about my experiences, I didn't even begin to think about her experiences.  That was also the first day that she met another parent.  
So, my first time to meet a deaf or hard of hearing adult, her first time to meet other parents.  So, for years and years and years, we talked about that, and the last year of her life, it kept popping up.  She had dementia, but that kept coming up in most of our conversations, deafness, deaf adults, deaf kids can do this, go do it.  Okay, so, we're doing it, and low and behold, that beautiful girl on the left is my 15‑year‑old daughter, and she, we just found out she's hard of hearing.  Go figure.  She's been hearing her whole life, I have three beautiful children, they were all hearing, and she just had a big drop.  So, you never know in your life what's going to happen, and you never know the twists and turns in families, and our family, we've certainly had our share of twists and turns, but that's what we're going to talk about today, how do you support families through the twists and turns in their journey, and you'll see, weaving in some of the things about my mom, my daughter, her life, her daughter, and just different experiences that we've had together, this awesome connection that we have.  Good.  We need them too.  Don't go anywhere.
(Laughing.)
>> SPEAKER:  So, I think all of us kind of can relate to, um, expectations that we make‑up in our minds about the way things may happen, so even before we even think about having children, when the idea of children pops up, we have this expectation in our mind about what that's going to look like, and then later on, you get pregnant, you get ready to have a baby, and again, those expectations are even stronger, because it's going to be happening soon, and so you have this picture in your mind of this baby, this beautiful baby that you're going to have when you go to the hospital, and then you go to the birthing facility and you have your baby, and everything is great.  Sometimes, you may know that you're going to have the hearing screening, sometimes, you don't.  Unfortunately, in Maine, a lot of our families go in to have their babies and they don't realize that screening is even going to happen, which is something we're working on, so when the nurse comes in to take your baby to have a hearing screening, that may be the first time that you've heard about it.  Then they come back in and they tell you your baby referred, and what does that mean to you?  How does that change that expectation of what you were expecting to have for this baby?  So then, if you happen to be in the room, this is, your baby is hooked up to these wires, the baby refers, you're told that you need to go for more testing, because the baby may have hearing loss or may be deaf or hard of hearing, words that maybe you don't know anything about, and, so, along the beginning stepping stones of that journey, your expectation of what you thought was going to happen now turns into these scary, this scary information, scary words that you are being told, um, at the audiologist and even in the hospital.
>> SPEAKER:  And our goal is to really bring this back to the families, to help them see that regardless of those wires on that initial first or second day, it's still their beautiful baby.  I'm going to ask that you look up here for a minute and watch this slide.  How many of you have heard that term, neurologic emergency?  Kind of popping up a lot in our field.  It's a scary word.  It's two scary words, neurologic emergency.  The slide before showed the family in the middle and all these words popping out at them, ABR, testing, appointment, listening and spoken language, cued speech, hearing aids, cochlear implants, all those words that, as a new mom, you certainly never thought you would hear.  Then I was chatting with an audiologist the other day about this process of supporting families on their journey, and she said, no, no, Karen, you have to hurry, it's a neurologic emergency.  Oh, it is?  But it's really not.  It's really, really not.
>> SPEAKER:  So, the meaning behind our presentation, really, is that we encourage you to slow things down.  We all know that there's an urgency, we all know that families need to bring language into the home so that baby will develop language on time, but when we're talking about a small baby, infant, in your arms, a day or a week, if that family needs that time to be able to soak in those really scary words, is what we need to be doing for them.  If they are not feeling like this is that same beautiful baby that I was expecting in my mind, it's so hard to make those connections that need to happen in the very beginning, it's so hard for families to feel like they know how to take care of this child now, because things are so different, and I don't know anything about all this information that you're telling me, I'm thinking, in my mind, as I did later on, Deavan was older when we found out, I'm not sure that this is something that I can do, I don't know anything about it, and sadly enough, some of the families that I have worked with have told me that they're not sure they're enough, and how heartbreaking is that?  That a mom doesn't feel like they're good enough to take care of this child.  So, slow things down.
>> SPEAKER:  I had an experience, um, showed up for a home visit, dad answered the door, ran out, said you deal with her.  Okay, so I looked in, I was in the kitchen, looked around, didn't see anybody, I guess I got to keep walking a little bit, he told me to deal with her.  Okay, so I stepped foot in the kitchen a little bit more, I'm deaf, so I couldn't hear.  Hello?  Hello?  I don't know if anybody's responding to me.  Walked a little bit further, the living room was dark, peeked in, mom's huddled in a corner, crying.  Okay, walked over to the mom, sat down, arm around her, said I'm Karen, I'm here.  Looked around, no baby.  Where is the baby?  I'm supposed to be seeing this deaf baby.  Other corner, baby's in the car seat.  Mom had not held that baby once since the diagnosis.  It had been three weeks.  The baby had a mild unilateral hearing loss.  Slow things down just a little bit.
>> SPEAKER:  So, again, as I was talking about, those early interactions are just so important, and just as our kids, our deaf and hard of hearing kids are individuals, we also have to look at the families as individuals.  Everybody needs something different, everybody needs information given to them in different ways, and, so, if you have a family that seems to be moving along this process really well, their stepping stones are going really well on their journey, then, sure, keep things going, but when you run into these families who are really struggling, it's okay give them that chance to take a breath, to give them that permission to take a breath.  Look at your baby, you can do the same things with your infant that you were planning on doing before, you can talk to your baby, you can sing to your baby, making sure that they make those early connections that are so important.
>> SPEAKER:  And sometimes, you just have to go to the beach.  I had a mom, another mom, lots of mom stories, dad stories, I showed up at the house, and we had a great relationship, we had a lot of fun interactions, home visits, we were great.  Straight face, do you really have to be here today?  Whoa.  Um, well, we were going to have a visit, are you okay?  Karen, I just want to go to the beach.  I want to be a mom.  When you show up, it's my deaf kid, my deaf kid, and she threw things down, and I'm like, okay, go to the beach, call me when you're ready.  So, I drove off, thinking, oh, no, I just said call me when you're ready?  How am I going to close that loop?  Is that mom ever going to call me back?  But if I would have pushed that mom and said, so, when are you calling me back?  I'll see you next week?  I'll see you next Tuesday, right?  Right?  No.  There was enough in me to know that I needed to let her go to the beach.  I didn't hear from that mom for two months.  Got a call, I went to the beach, Karen, it was awesome, we played, we danced, we built sand castles, we swam.  Can you come back next Tuesday?  I'll be there next Tuesday.  What a difference in that mom.  She hadn't really lost a lot of time, it was, like, a month and a half, two months, but the relationship that that mom and that little girl built was far bigger than anything I could have given her. 
>> SPEAKER:  So, one of the things that, um, we talk about doing, obviously, along this journey is empowering families, and in the beginning, if any of you parents out there, I see some parents out there that I recognize, we don't feel like we, um, know a whole lot about anything to do with the deafness, and so when we have the professionals/providers coming into the home, we're feeling like every time they ask us a question, we don't know the answer.  So, empowering families by letting them give you answers about the things that they know is so important.  So, a lot of the times, with the early interventionists in Maine, with our process, rather than going in and asking about the deafness and what has been happening at appointments, it's tell us about your baby, who are the members in your family, what are your interests, what do you like to do as a family, or just as a mom or a dad, where do you get support from, which is so important.  Those open‑ended questions, so that families feel like they have input into this situation that is so overwhelming for them in the beginning, where they don't feel like they know anything about.
>> SPEAKER:  We also spend time talking about how do they tackle challenges, not related to deafness, but about anything.  How do you get through struggles in your life?  And how do you like information?  Do you like to read books?  Do you like videos?  Do you want me to talk to you?  Who's this parent that you're meeting with?  We also spend time really working with the family, when works for you?  Night visits?  Morning visits?  Am I going to come on Saturday?  We're extremely flexible, and that's really hard for some people to understand, but it's really important to us.  Caregivers decide what happens in those visits, and we work with them.  We don't walk in with agendas, we walk in with a family‑centered agenda.  Families are recognized for their skills and creativity and everything that they have to offer, and opportunities to meet other deaf and hard of hearing parents and adults really, really early.  Um, so, in a visit, it's really important to check back in and check back in with families.  We're talking a lot about reflection, but suppose they went to the audiologist or they had a doctor's visit, you asking them questions, what did they tell you, get their perspective.  You can read that report, but hearing mom's voice or dad's voice, it's really powerful.  What made sense to you?  What was confusing?  And what info do you need?  And what will be helpful?  Breaking that down for the family, versus just saying, so, what happened?  Kind of giving them cues as to how to respond to that.
>> SPEAKER:  For me, as a parent guide, when I go on a visit to a family's home, or even when I'm making a phone call, I try to be very mindful about where my mind is at that time, when I'm going for the visit or making the phone call, so that I'm not letting things that have happened before the call or the visit influence what happens with this family.  I try to look back in my notes and see what we talked about the last time, so I know what their concerns are, so I can bring them up again, if the parents do not bring them up themselves, and I try not to, um, put my agenda, again, on the family, so that I'm coming in there open to whatever it is that I end up talking to them about or what's happening in their home at that visit.  I think it's really important for early interventionists and for us in the, um, parent guide positions to be mindful of not coming with something, that you got into an argument before at home, and then you're kind of angry, and that's your attitude when you're going in to talk to a family, but making sure that you're present and open to what the family wants to talk about.
>> SPEAKER:  And it's such a journey and such a process.  So, the professionals in the room, knowing when you knock on that door, like when I knocked on the door, that mom, the mom inside, she had a lot of feelings, a lot of expectations.  I did too.  What's going to happen when I walk in that door?  I have opinions and information.  We need to have a dialogue, we've got to have respect.  Build rapport.  If you go about it with that approach, it'll lead to collaboration.
>> SPEAKER:  And along that same path, that same journey, we, as families, have our own feelings and our own expectations that may be different than the professionals that we're working with, so being able and open to share that.  Opinions, we're getting a lot of opinions from a lot of different places, and, so, remembering that in our visits, um, that what you have for an opinion may be different than what somebody else has, and making sure that that conversation back and forth with your providers is really respectful, so that you can build that foundational trust, like I talked about with Karen and I and our relationship from the very beginning.  We really want to become a team.  Obviously, everybody, even if it's you and one other person or you have three or four people on that team, it's really important for families to feel like they are the same, equal partners on the team, that all of us have different roles, for sure, but, um, that the parent perspective needs to be kept in the forefront through all of this.  Um, talking about your outcomes, implementing plans, making sure that that plan is, the parent is involved in what that plan is going to be, not that you are setting up the list of what's going to happen and then just expecting the family to go along with that, and evaluating progress along the way is so important.  We're really proud in Maine that we are, um, assessing regularly, so that it kind of opens up that door to look at that process and make sure that the child is making progress and the families feel like the child is making progress, and then making changes, being able to have that trust with your professional, with the providers, so if you want to make a change, that's something that you feel comfortable bringing up, and you don't feel like you're stuck in what you decided in the beginning.
>> SPEAKER:  And for the early interventionists, when you leave that visit and you're driving away, how is information exchanged?  What strengths did you notice in that family?  And what insights were shared?  Thinking about that when you're leaving and not just hurrying on to the next visit, but reflecting.  And the starting point, sharing information together both ways, sharing resources, opening up all the opportunities for families and making those connections.
>> SPEAKER:  So, these are really important, um, responses, like we talked about, not having the open‑ended questions, not the yes/no questions, so respecting back with the family, it sounds as if, extending that clarifying, tell me more about what you mean by that, so you can clarify, um, what do you think about something rather than asking them do you think this or do you think that, and summarizing what they say, so that they can hear what they've told you and see if that's really what they agree with.  Checking in, making sure that you're, um, checking their perception of things, acknowledging that some of these things are challenging and that we can take time and get more information, if we need to, um, and really just allowing that time to be quiet, again, slowing things down so that it doesn't always have to feel like we're in a race and we have to keep moving forward, even if that's not the place that the family is at.
>> SPEAKER:  So, initial decision‑making, that's really important.  You have to make sure that all opportunities are discussed, and that's part of the trust‑building.  If you tell one thing or the other, that trust is not going to happen.  Communication plans, we want parents to write them in their own handwriting.  If you're interviewing an early interventionist, and you're checking the boxes and saying this family wants whatever, that's your plan.  Let them write it, it's their plan.  Stress the continuous conversation, that they can change their journey at any time, and that's going to be okay, and remember, it really is a journey.
>> SPEAKER:  So, in Maine, we do this routines‑based early intervention, which I think is really important.  It goes along with the day‑to‑day routines of the family, which, again, empowers families, because we know what we do in our lives, we know what our routines are, and, so, we're not trying to stick therapy into places that we can set that up, we're trying to give you the tools to use during those routines that you do all the time with your family, and you know those, and, so, you are knowledgeable about that part of the process, which, again, empowers you to feel like you are the one that's making that plan forward, and as Karen said, on the communication plan, if that plan is in your writing, you know that you are behind that, that's what you wanted, it wasn't something that was written up for you and you just signed the bottom when they left.
>> SPEAKER:  And it's so important to allow time for the families to explore, reflect, if change is needed.
>> SPEAKER:  And sometimes, a change is needed, as we all know, and I think the trust in that foundational relationship in the beginning is so important with this, because, for me, I felt like those people that I had in the beginning with us on our stepping stones of our journey, um, they saved us.  That's what I felt.  Those people, Karen and another woman that's not in here right now, but she was one of our early interventionists, I felt like if I hadn't had them, I don't think that I would have been where I was at that point, but then you also have this, um, feeling that you owe them something, and if that relationship isn't done correctly, the conversations are not open all along, you're not looking again to see if everything's going the way that you want it to be, if progress is being made, it's hard for me, as a parent, to speak up and say, I know we've been working on this for six months, and you've all put really hard work into this, but I think I'd really like to go this other way, but if your professional is opening up that window for you to talk about that regularly, then it's not you that's feeling like you are letting people down, it's actually part of that journey, which I think is just so important, because we definitely have made changes, a lot of changes along the way.
>> SPEAKER:  And we have to wrap‑up.  I'm going to read this one last thing, and then she's going to read one last thing.  So, looking for strengths, listen to families, don't tell them what to do.  Think with them, not for them.  Give information, but don't insist they use it.  Develop options, not ultimatums.  Look for the positives; you'll find them, not the negatives.  Don't ever say you're wrong.  Determine why they feel they're right.  Congratulate their successes, and don't ask for applause.  Follow their agenda, not yours.
>> SPEAKER:  So, this is a final thought from a parent that we use a lot when we're presenting in our conference in Maine.  What we really want, really need, as parents, is opportunities to contact other families with deaf children, help in making regular contact with adults who are deaf or hard of hearing, information that is accurate, honest, unbiased, and fair, and the emotional support to make decisions.
>> SPEAKER:  Thank you, everybody, for coming.
(Applause.) 
>> SPEAKER:  We just realized that it didn't upload, so I can go back and tell them it's okay to upload it and see why that didn't happen, because it certainly, if, for some reason, it's not, if you go to Maine education center for the Deaf and Hard of Hearing, you can find me, it's Karen Hopkins, and I'll be happy to send it to you.  

This is being provided in a rough-draft format. Communication Access Realtime Translation(CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.