ROUGH EDITED COPY
2017 EHDI Annual Meeting
Topical Session 8
Hanover F
THE C.A.R.E. PROJECT FAMILY RETREAT NATIONAL INITIATIVE
3:45p.m.
February28, 2017
CART SERVICES PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
PO BOX 278
LOMBARD, IL 60148
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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.
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> Welcome, everyone. I'm Nicole, the room monitor. I'd like to introduce you to our speakers. We have Johnnie and Patti.
> PATTI MARTIN: Thanks. I feel like we should get up and dance. That made it sound like we were a dancing duo. So we might need to. My plan was to get prizes for y'all for coming to the last session that lasts a whole hour, and I didn't get there, and then by the time I got out here, there was, like, nothing left but the healthy pretzels so I stuck some of those in my bags. Just didn't go like I'd planned so I'm thinking chocolate's in my future. Seriously we appreciate you being here. It's been a good two or three days depending how long you've been here for the EHDI Conference, and I hope that you're leaving with lots of valuable new ideas and tools in your pocket.
So I'm Patti Martin. Our friend and colleague Teresa Caraway is not with us today except for in spirit and Johnnie Sexton will probably introduce himself a little more to. I'm at Arkansas Children's Hospital and I've been interested in ways to support families, oh, let's see, for more decades than some of y'all have been alive probably, and find that that is one of the most exciting things that I do. I also do a little bit of work with NCHAM on the side, and have some other opportunities, as well. So I wanted to let you know that.
So since it's the end of the day and your brains are so full of stuff I thought I'd tell you some things to start with that you didn't know you wanted to know. This is stuff about vowels, all right?
So one of the things you mate not know is that English has more vowels in it than there are letters for them. So if you think about it you probably did know that so AEIOU, sometimes Y so that's six. But actually in the English language, there's about 16 different combinations of vowel sounds and the most common vowel is the schwa sound, it's an E and it doesn't have its own symbol. One of the other great things about vowels is that my Spanish sounds American, because of diphthongs and so diphthongs take you from one vowel sound to another. So when I say the word "no," I go from O to U and I bet a bunch of you do as well but in Spanish you don't. It's not a diphthong and you stay on the O sound.
There's some sounds that can be either vowels or consonants, so if you think about OO, that's a vowel and if you think about the word blue, it ends in a W sound and so it's one of those ones that can go either way.
Most languages have at least three vowels: A, I, and U, and some have up to about 15 or so. And if you go to the international phonetic categorization, some of you will remember having to do this when you were in school, there's 34 symbols for vowel sounds, so and then in the late '60s, this French guy wrote a whole novel that was 300 pages long and it had not a single E in it.
Okay, so what does that have to do with anything that we're here to talk about today besides that I'm kind of a word nerd? What it has to do was I talked to my friend Mandy McClellan. You may know her. She's a parent from Arkansas and she's very involved in the EHDI work and on the planning Task Force for the National EHDI meeting and I said: I'm not sure what I should do to kind of lead into our conversation about the CARE Project and using a retreat type of setting to support families. I said maybe I should do some sort of ABCDE sort of thing, the ABCs of supporting families and I said but you know Johnnie, he talks more than I do so I'll never get to do 26 slides and get through in the amount of time.
I laughed and said maybe I can do vowels and this is such a great example of the sort of things that we learn from listening to parents, because when I get up the next morning, I had this from Mandy. This list of vowels. And what I should tell you about family support is it relates to vowels. So here we go AEIO and U and I'm not going to do Y because it's the end of the day.
So let me tell you a little bit about A because our goal in supporting families I think starts with A which is that we're all in this together. So some of you may recognize the model of family support in the center and it's been around almost two decades. A group of us years ago sat around the table and talked about: Where do families actually find support? And how can we try to operationalize it? So what I love is that the family's in the center of this.
We see that families get support from professionals, families get support from adults who are deaf or hard of hearing, families get support from other families, so parent to parent report. You know families get support from information, because we all love information, if you live on the professional side of it, right? We love information and giving that and what I love about this model and have for all this time is the twoway arrow from the family under existing communities, because it's always such a good reminder that families come to us before a diagnosis, with a whole existing community of folks, folks they run around with, a friendset, et cetera. And one of the things we can remember as we try to support them is how to send them back home to their existing community with some tools to be able to do that.
So A for all in this together.
E, I have to tell you that Mandy sent "embrace" because she wanted me to talk about embracing the journey, and so what I thought about, the best way to do that was through empowerment. And when I was thinking about empowerment, I thought: Why not just embrace the journey and support families?
And I think what we know when we've been doing it a while is that support is not enough. Support just gets you so far, and until we recognize that parents are the experts on their children, and help them believe that, and that then gives them the skills to be able to plan and implement their own journey, then we really have only supported them. We haven't empowered them.
The other thing is that it helps us move away from that very difficult task as a professional of not making parents be dependent on us so some of us are old enough that that's the model we were taught is that I was the expert and when it came to knowing things about deaf or hard of hearing, I was the expert on that, not the family. An empowering model helps us move away from that. That's affirming from families. It helps them know: I've got the tools to do this. It's what I'm going to need to be able to get through.
I have a mom who occasionally writes me these great notes every time she has a little milestone so I love this picture of when her child was a little baby, which she's not anymore. And what she told me is: I remember thinking to myself, I don't think I've got what it takes. Okay? I don't think she's unique in saying that. I don't think I've got what it takes to do everything that it's going to need, that my baby's going to need, to get her where we dreamed she would be.
And then she tells me, a few years later, I can't imagine my life being any different, being different from how it is. I've been so personally enriched from this process and by the people we've met along the way so I hold those quotes somewhat dear to my heart because we don't get it right always but sometimes we do, so I have this in my pullout on a rainy day, bad day file so I can remember to look at the E for that.
From a theoretical framework, there are these guiding principles about empowering philosophy and I guess what I would want you to know as we tell you some about the CARE Project model and then our new collaboration to help move that forward is that these are the sort these are principles that those are based on, and that everyone has strengths and capabilities, as well as the capacity to improve upon those and to become more competent in what they're doing. I love this middle guiding principle and I was particularly reminded of this as I listened to the Georgia Pathway people talking yesterday about their program, so the failure of a person to display competency is not about them. It's about our system. And so it's the failure of our system to help promote competency for those families.
And then the other thing, the last piece of that, is that when you need to build competency, when you need to build resilience, and the idea that I can get through the journey, the best way to do that is through an experiencebased sort of opportunity, which is really what I think our family retreat CARE Project kinds of programs have been.
I is information. I talked about how much we like information as professionals but I will tell you that at the last retreat I was involved in, this past summer, I started listening to the kinds of things that parents said to each other, because where families get information from us about services and technical stuff and blah, blah, blah, and how to sign up and how to pay for this, this is the kind of good stuff that they get from each other. So are you worried about so and so? All the kinds of things that they're not going to ask me when they come into the clinic.
Tell me about if your kid gets made fun of. What's the best advice somebody told you? I really love: What in the world does so and so mean when she says blah, blah, blah? I think my name was inserted in that. What does Patti mean when she says, and I'm thinking I thought I was doing such a great job explaining that! Okay, I heard a couple of folks talking about that their audiologist just thought they knew how to read their audiogram and they just didn't tell them any different so I think it's important for us when we can to give parents as much information and then to give them opportunity to get information from each other because they tell us in hind sight, that's where they got the really good stuff.
O for me and my little vowel thing is about observe so I do want to share with you a couple things I do better as a professional, because I try to spend a good bit of my time, I actually don't get to spend a good bit of my time specifically observing family to family support and I try to intentionally do that, at least once a quarter, if I can, so one of the things I've learned is, it's really hard to hear news that you didn't want to hear if your baby is across the room.
And so I try to share news that isn't news people want to hear with their child in touching distance and I think it makes a difference and helps people be able to focus. I also tell them on the front end that I'm going to give them too much information because it's what we do and reassure them that they're going to hear it multiple times and there will be redundancy in it and they don't have to remember it.
I try to be honest about what I don't know so that used to really bother me. Now I'm like, you're going to need to figure that out and try to be very upfront about that and then also connect them to the people that do know what I don't know. We've invited parents to the table time and time again and we used to put together Task Force or a committee or whatever and then we would meet and go, gotta get a parent. Now we've gotten so much better at infusing that into our processes. We even ask parents what committees they think we ought to have and what subgroups they think we ought to have. The other thing is I have an opportunity to interact with graduate students in audiology and speech pathology so I think is incumbent upon us who get to do that is to expose them to families of children who are deaf and hard of hearing, much more frequently.
So we want them to know how to test kids or how to do whatever kind of skill that they need to get their certification or their graduation or whatever, but that opportunity to interact with families in informal settings is priceless to these students, in informing them as they go out into practice. And so I've had students tell me that they get it when they have an opportunity to see what it looks like, to try to keep your kid in technology on the air in the middle of trying to have a normal family outing at the zoo or tell me, wow, it sounds like great fun to learn ASL, except for that you don't know how to do it and you're trying to change your kid's diaper and get them where they go, and not hurt your other kid, and everything else in the middle of doing it so I think that makes it real. It's one of the things I've tried to do differently from my observations is expose students to informal opportunities to interact with families to make them better professionals. I think it makes me better at my job. It makes me still after 35 years still love what I do.
And U is to understand and not to underestimate. So understand that it's a process, and not to underestimate what families can do, and what families are capable of if we help empower them to be able to do that. So I'm going to share a video that is a family of ours named Melinda who actually is here at the conference today. And I see she cut out on the session. I'm going to give her grief.
But I want to share this with you because I think it's a great leadin to have a feel about the kind of work that's being done through the CARE Project.
It's about 7 minutes.
[Video]
> JOHNNIE SEXTON: Can you hear me okay? I'm just going to use this mic. I think I know at least half of you. This is I think my ninth EHDI Conference, and I started...
> PATTI MARTIN: Technology never messes up till Johnnie gets up there.
[ Laughter]
> JOHNNIE SEXTON: We need technical assistance.
Voila, thank you. Thank you, technical assistance.
[ Laughter]
Patti is a lady of many talents.
I started talking about the CARE Project about nine years ago, my first EHDI Conference. I was excited about this little tiny idea in my head and that's where it lived for a while. But I have to say that the EHDI world has become most embracing for what we do, and how we do it. The CARE Project was started to first and foremost provide emotional support for families. Secondarily it has become a professional continuing education sensitivity training for lots of folks who work with these families.
It's a 501(c)(3) nonprofit, and our foundation has been able to eventually begin to get grant money to fund the things that we want to do. A few years ago we had a grant to take our message out to 10 new states across the country and I visited some of you on that trip. And now we are looking at a new Chapter and a new funding source to help us to do more things.
Plainly put, the CARE Project brings families together. We host family retreats. We select a number of families that can come and join us for a long weekend. It also brings professionals together with those families, because we depend on volunteers to come in as speakers and child care workers and fun activity directors. And it can bring whole communities together. We've seen the networking that can occur when we've done a retreat. Families go home and they stay connected.
What we hope we find through this family support system that we've developed is the ability to share stories, share experiences, to network, to connect, as Patti talked about, to empower them and certainly to lead them forward to advocate not only for the best interests of that child, but for their whole family. And I always say to families.
Whatever we're trying to talk to you about doing for your child with hearing loss, we'd expect you'd want to do that for any child regardless, so it's nothing different. It's nothing different at all.
I spent a lot of time studying the emotional journey and trying to make linear diagrams and sine waves to represent it, but I found this two years ago and this really does explain the emotional journey. You can't predict it. It comes and goes. It's all over the place and mine will be different from yours, but we can come together and find something in common by sharing what we're going through and moving forward.
One of the signature things that we have evolved is the concept of the family retreat. We did our first one seven years ago, and I always laughingly say, we didn't know what we didn't know. It was successful, and we learned from what we made mistakes on. I was sharing earlier today, we did not require parents to separate from their children for the parent workshops. That was a disaster. But we got through it.