Creating a Strong Family Education and Support Group

ROUGH EDITED COPY

SEGELL ROOM

"Creating a Strong Family Education and Support Group"

MARCH 10, 2015

10:10 A.M.

CAPTIONING PROVIDED BY: ALTERNATIVE COMMUNICATION SERVICES, LLC P.O. 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.

* * * * * >>MODERATOR: Okay. Welcome back. And we're going to get started with our second session of the morning. It's "Creating a Strong Family Education and Support Group." We're glad you're here, and we welcome Ali Devey. >> ALI DEVEY: All right. Can you guys all hear me? Okay. Well, I'm so glad you guys were all able to come today. Can I get a show in the audience? How many parents do we have out here? Yay! I was hoping we have some parents. I really want to get some of your feedback during my presentation today. My name is Ali Devey, and I work up at Utah State University in the Sound Beginnings program. I went into the field after having gone through the journey with my own daughter who was born profoundly deaf. I'm not sure if my clicker works, so I'm just going to stand right here. The objectives today that I want to go over is I want to talk about why a family education and support group is important, and I actually feel very necessary for families. Oops. Okay. Thank you. To identify the steps to starting a family education support group, and also to come up with ideas and generate ideas together that you think would be great for support groups, and to share some of the ones that we've used as well. So the reason, as I said, I have a child who has hearing loss. One reason I think it's so important to me is just remembering the stages of finding out she was deaf, and feeling very, very, very alone in the town I was in. I didn't know any other children with hearing loss. And it was all very new to me. So when we ended up moving up to Phoenix for a program there called desert Voices, they had a support group there. It was a very small one. It was a birth to three, and it was kind of similar to the one that Heather, I believe her name was, was explaining, where the parents would go out during that toddler group time and -- or the early intervention time, and they would meet together. Sometimes there was only, you know, two or three of us, but again, that support I felt was invaluable. It helped me through some of that grieving process. It gave me hope, and I'm just really passionate about these groups, and I'm sure a lot of you out there are as well, especially being parents and providers who have provided the service as well. So there's a lot of reasons for creating a Family Education and Support Group. My top three are I want to get families connected. I love, more than anything, I love when I go out in Logan, that's where I'm at, in Logan, and I see a family together, and I'm thinking oh, my gosh, they're going on a camping trip together. How awesome is that? I love to see those family relationships build. Having a safe environment, a safe place where families can share their fears, their thoughts, get questions, answers, answers to the questions. It's amazing when you see those interactions taking place, and you can almost visually see the healing process occurring. And then also, of course, teaching parent strategies, that, for my program, it's listening and language, but for any support group, on whether it's just communication in general and various topics that come up to help children with hearing loss. So considerations when starting a family education support group. First of all, how many of you out there have actually started a group of your own, a family education support group? Oh, this is awesome. And how many of you have attended or regularly attend family education support groups? So a few of you. When I was working on this presentation -- well, when I was working on getting my group together, I started a couple years ago, I started calling around to different programs that I've heard of that are out there, and asking them what they're doing for their family education support component, and a lot of them involved more of at-school, joining sessions, like therapy sessions with their child, but it wasn't necessarily parent-to-parent connections, and I was actually a little surprised about how many weren't really doing this, didn't have this component, and there was a lot of barriers and reasons why maybe they had started it and it had fizzled out, and I think those of you who have worked on planning one together, you might have experienced some of those challenges as well. I see some heads shaking. So when starting a group, considerations I was thinking about was okay, what are my objectives here? What do I want to accomplish with this group? Is it just educating parents? Is it just a social thing to bring families together? I think most of us know it's a combination of the both, even if it is a social gathering and not necessarily a speaker component, they're always learning because they're sharing with each other and learning from each other's experiences. I want to see -- you know, you gotta think about who is your target population? Is it the students in the school you serve? Is it expanding out? Is it everyone in your community, just open to whoever? You know, once you decide what your objective is, who your target population is, you can start to fine-tune it a little bit more and get the structure you're looking for. You have to think about how you're going to recruit families. That can be hard, especially if you're not in a center-based program or somewhere that already has this big E-mail list of families involved. Sometimes you have to go hunting and get word of mouth, who do you know who has a child with hearing loss? Again, where I'm at, we have resources to be able to locate those families. Trying to decide what discussions and topics you're going to talk about, that's definitely something you have to consider. And what resources you have available. What do you need to find? Do you need to get volunteers for child care? Do you need to have a location? I mean, if you're trying to plan one from the bottom up and you don't have a program, you may need to see, okay, are there local schools that will let us borrow a room? Is there sometimes churches let people borrow a room in there and just have meetings. So those are some of the considerations you definitely want to think through as you're planning this. I found the best way, because I am in no way an expert at this, but I feel the best family support groups come from getting the information from the families themselves. So we send out surveys at the beginning of the year as we're planning our groups. How many of you guys have sent out surveys? How many of you guys have got an overwhelming response and have a nice stack on your desk when you -- doesn't happen. It doesn't happen very easily. So what I've done, I'm not going to click on my link because I'm a little bit afraid that I will -- it's supposed to take me to the internet, but what I do is I send out a survey, and I use just a very basic, simple, free survey monkey. Have you guys used survey monkey before? So far I found that that's my best way of getting responses back, is through Survey Monkey. And I try to structure it. When I ask about days and times, I don't want to have five or six options, I want to have maybe three at the most because if you just get everyone doing something different, you're not going to have that commonality, or, okay, this is the best day because this is the most people who can come here. So I have a blank section where, what are some things you want to learn about this year? So not only are they check marking, you know, these are my highest level of interest areas, but they're also typing in something that they're interested in because that's -- that's, again, how you're going to make the most impact on families is when you're listening to what they're wanting and what they're needing at that time. So as soon as we do that, and I get the survey back, then I create the flier for the year. Again, it's got a little disclaimer. It's subject to change, but I think having an out -- an overview of the whole year when the dates are, what a topic is going to be, where it's going to be held, I think that makes it easier to plan and to get that attendance coming. We do send out -- well, I'll talk about that a little bit later, but I'll show you just a sample of what this year's flier looks like. Okay. Good. It didn't. I thought it was going to go over our captioning there, but -- So I will scroll down. And this is, again, it's based off of some of those results that I received back from families in that Survey Monkey. So we have two -- this year, I started something different. I wanted to have a couple evening activities as well, because last year, they were all in the mornings, and they went well, but I really wanted to see if we -- what our numbers would do if we did evenings. The first evening one with parents and children, there were 67 people there. A lot of them were kids. So they were in the child care room. But it was definitely a bigger group than in our mornings. But then our second evening one we did, there was six families there. So I mean you're doing your best to accommodate families but there is going to be ebbs and flows of attendance, I'm sure, as you all know. So that's just the flier that goes home at the beginning of the year. Just to get families -- get them thinking about it, excited about it. And I love when someone comes up and says, oh, that was the one I suggested on my survey! Thank you! And I love to hear that because I really do want to gear it towards the family's needs. That's what it's about. I want to see, does anyone have some ideas of meetings they've attended that have been very successful or ones that you've put out there? Can we just start throwing out some topics there? I want to get other ideas, not just the ones I've used, so anyone who's attended one or created one. Ooh, that's loud here. Am I loud to you guys? Okay. Got one back here. And I'll just bring my mic. >> AUDIENCE MEMBER: One of the meetings that I got a lot of success and attendance for is IEPs. A lot of parents who just needed more clarification came out for IEPs. >> ALI DEVEY: Thank you. Any others? Come on. You all said you went to meetings. >> AUDIENCE MEMBER: We did one that also covered hearing loss once again in a group setting, and then also what is auditory/verbal therapy, and the families really came and seemed to understand more. >> ALI DEVEY: Awesome. >> AUDIENCE MEMBER: I think the most successful ones we've had are when families can share with each other stories of, you know, what's going on in their life so that they feel a connection between each other. >> ALI DEVEY: I love that. I love that. >> AUDIENCE MEMBER: So I think the ones parents come to a lot are having roll models, like deaf role models that come in, share their story, kind of show everything is going to be okay and the parents seem to like those ones. >> ALI DEVEY: Thank you for sharing, everyone. >> AUDIENCE MEMBER: So we're lucky enough to be from New Mexico and had Rachel Kolb speak at our -- we had a back-to-school presentation so then we followed it with a meet and greet so families could interact with each other. Plus they had, you know, the empowering speech from her, and it's on our Web site, by the way, so you can hear it again. Hvnm.org, and it's great about self advocacy, and it just made a huge difference in my daughter's life, just learning from Rachel, but then we followed with the meet and greet, and then to do it, we have like zero budget, and we were able to collaborate. We got Spanish interpreters donated. We got the museum, we actually held it in the planetarium. They donated the space. It was like there were a whole little village coming together. It was great. >> ALI DEVEY: That's wonderful. >> AUDIENCE MEMBER: One of the more successful ones in New York that we do is we have a panel of older kids with hearing loss come in and just sit at the table and speak to the parents with the younger children, and they love to hear from them how well they're doing in school, you know, how -- if they're doing well socially or not doing well socially, what kind of support they would need. So that always works out as well. And one more thing, too, is there are some nights when we only have one parent there, but don't stop the parent support groups if you only have one parent because you're helping someone. And whether it's one or 20, it doesn't matter. >> ALI DEVEY: I completely agree with that. If that one person has that strength given from that meeting, you've made the difference. >> AUDIENCE MEMBER: In our state, the State of Illinois, we're in our tenth year of doing an overnight retreat for moms, and so we kind of have them for 24 hours, and we, oh, last year, I think we had 30 in the central part of the state and 65 in the northern part of the state, and moms look forward to it. Any time they see me out and about in any you conference or whatever, they're like, when's mom's night in? Because, you know, no kids, they can -- you know, we end at 9:00, and then they all go to the bar and have a good time and some of them drag in the next morning but we always do a panel. I agree with you, panels are it. Any time I have panels, parents come, whether it's a panel of professionals, other parents or children, those are really, really big ones. >> ALI DEVEY: I definitely agree. I remember when my daughter was -- we were in the process of getting an implant, and they had a parent -- or a parent panel and a child panel, and I remember just bawling my eyes out thinking, oh, my gosh, she's going to be able to talk, and she's going to be able to communicate, and it was amazing, and it was life-changing for us. And I love the ladies' night idea. That's very fun. Were there any more who wanted to share before I go back up? >> AUDIENCE MEMBER: We've just occasionally had like a geneticist come in, and genetics has been a popular one. >> ALI DEVEY: Add that one on to my list. That's awesome. Because you always have people questioning, so that's fantastic. Thank you for sharing. Just kind of an off-topic, but my daughter was actually on a panel. She's 12 now, and she ended up being on the other end where she got to be on a panel, and it's a silly story, but they were asking about FM systems in school, and it was -- it had been kind of a serious meeting up until this point, and they asked her if she liked it, and she said well, I kind of feel like I'm a spy because sometimes my teacher forgets to turn it off, and I hear her private conversations, and just -- just the things that children say. It's such -- when you have a panel, it's honest. There's so much honesty, and you really get to see, you know, the child, not just the hearing loss, but wow, everyone has their own unique personalities, and it's incredible. All right. So I think you guys touches on some of the ones that I was going to share here, but getting to know you, sharing your story, I think the gal in the back mentioned those meetings where you're talking and sharing your stories. And I've actually -- we had one, and then I had changed it -- well, just in this last year, we had had one, and it went so well, I had this whole slide show with different questions that everyone could answer, and I think we got to the second slide, and so we had requests to do that again, and it was really therapeutic for the families. I think half of them, they were younger, you know, newly identified, and they were in tears. But there was hugs and there was hope and there was just -- it's really therapeutic, I think, when others get to share. So navigating the IEP, someone shared that as well. Social inclusion has been a big one. Mainstreaming, especially when that time of year comes where our preschoolers are getting ready to transition, a mainstream night has been great. Ask the audiologist night. Wed a literacy night, FM system, how, when, why, what. Creating a strong self advocate, another gal shared about that one. One that was really popular at Christmastime was toys, games and books that promote language as parents are trying to seek out ideas for, hmmm, what am I going to buy my child, and then they get some great suggestions on those. Behavior was a big one. We, again, working at the University, we have some resources kind of at the -- our tips of our fingertips, so the head of psychology was able to come over and do a little mini workshop and talk about strategies for helping with behavior. We had one on hands and voices, how to get involved. Resources and apps that promote language. I have a link here, and I hope it will open up okay, but we recently had one on making experience books, and so this was -- it was a smaller group this day, but the lady who was presenting, she didn't want to just talk about it. She wanted a hands-on experience where they could really learn how to do these and so they were talking about making books and teaching children about inferences. So they did one on making hot cocoa, and they all had to come up with each page and think it through, and it was really fun. There was a lot of laughter, a lot of silliness. And then at the end of it, they were all able to take their book home. And I've had some parents talk about how they've been doing it now, making their experience books, and some of them just do it on an iPad, don't even print it out because of the cost, but they'll scroll through the pictures, talk about it with their child, and it's been pretty fun to hear their stories. So I won't go through all of that. So that was a fun one for us. After each session, I always do a post meeting notes just for myself. It's nothing fancy or professional. It's just ideas and thoughts all -- I deleted some of this so you couldn't see who was in attendance, but I put the parents in attendance just so I can have a record of who's coming regularly, who do I need to reach out to more, or how can we get more people involved. I'll put who the speaker was, what the topic was, things that went great, and things to work on. And then upcoming events. And again, that's just a nice thing for me to look at when it's only a monthly meeting. It's nice to flip back through my notes and go okay, what didn't go so well? Did the technology go okay? Because we do have people who will Skype in as well from different locations who want to join the group. So our typical monthly meeting, when we have them in the mornings -- let me see how I'm doing on time here. Okay. It's kind of scary. My clock, I put it on timer going down just because I didn't want to go too fast or too slow, and but now I feel like something's going to go off because I'm watching these numbers trickle down. So scoot that out of the way. Parents generally come in at 9:00, and they drop off their children, and their children get to play and have fun and eat breakfast in one of our rooms, and then we meet in the conference room. Those first 30 minutes are just for getting their Continental breakfast and visiting with each other. That's a great time, a great opportunity to catch up and get comfortable before the education portion begins. After that, we start introductions, then we have our discussion. We wrap up, and people pick up their children. So it's about an hour and a half long each month. One thing I love to see is after the meeting's ended and parents leave to go get their children and I'm cleaning up the breakfast and everything, I love to walk back through the lobby and see the parents still there, still talking in the lobby. Sometimes it's been up to an hour and a half that they've still been out there visiting. And that, to me, is success, when you see that those connections have been made. Let's see. This, I had trouble with my video this morning. So let's hope that works. This is just a sample, like some clips from different meetings. Nothing -- whoops. Potential challenges. Technology. >> Our family likes a lot of hands-on things, so -- [Inaudible]. Acting it out is huge, and that makes the story stick so much better. Another thing I was going to mention, when you're reading, maybe you're reading just really simple -- maybe it's a book about farms. So you're looking at this book. Sometimes trying to capture -- So they're thinking about it. So they have time to process it. Oftentimes if they see something visually, they may completely focus on that picture of that toy, so presenting the auditory first is always a good -- >> ALI DEVEY: Let me fast forward a little bit. [Video]. Every child is on a different reading level and a lot of the schools will actually give you either kind of a color that they're on -- >> ALI DEVEY: So that was all part of the literacy night. I apologize for -- [Video]. She was struggling through them. >> ALI DEVEY: Okay. Now I think I froze it up. That's not good. So this was one with hands and voices, and there's a lot of babies in the background, but again, that families are there. We don't have child care for the little babies. And the reason I put these ones in is because sometimes I might be presenting, sometimes we might have a parent presenting. And sometimes we will bring in other speakers or just facilitate a discussion. This was the one on experience books. [From video]. We're going to talk about how to put together experience books. And I thought, I can put together a PowerPoint that talks about why you should do it, and write down how you should do it, and I thought, you know, the best thing to do just give you an opportunity for actually doing it and putting it together and doing it. Because I think it's something that once people find out how really easy it can be to put it together, the technology that we have these days is really fun, and even if you don't have access to color printers, even if you just have just like a word file, and you just open your computer and you just visited that, you don't have to have the expense of the ink, but you still have this book. >> ALI DEVEY: Okay. So that was just some clips from a few of our meetings. Potential challenges you might run in to, I'm going to run through these pretty fast, but, you know, spreading the word and attendance kind of go together. Like I said, that yearly flier you send out, I also follow it up with just a little send-home reminder to our students, a little tiny one in their cubby, and then we'll E-mail families on our list to remind them. And then the day of, the E-mail is usually about three days before, and then the day of I just post a Facebook post, and that's been pretty helpful. And then attendance, again, that survey really helps to find out what days are the best for recruiting families to come to your group. The content, again, that survey really helps with that. And then some may incur the cost -- can you guys still hear me when it's down? I think I was talking too loud, because my ear's ringing. The food, materials, location, oftentimes groups who don't necessarily have the financial backing, they talk about bringing potlucks. When we first started someone had first said, hey, we can all bring food, and it didn't go so well so at this point I got a very small grant for our group for that purpose, so that's been nice. But really quickly, because I'd like to hear one more time from you guys, this is just -- I asked a couple parents if they'd be willing to share their thoughts. [From video]. >> I do recall a session that we had basically just advocating for our children. The instructor gave us some helpful tips on when our children are enrolled in mainstream to use like a pathway or a book or a fun video clip to introduce our children. That way, it kind of reduces the stress level. The family education and support group has been very beneficial for my family and I. There's a lot of resources out there that they've collected, and I enjoy the structure during the session, and the opportunity that we get to bond with parents that have similar situations. So it's just really nice to have answers to my questions, especially by a professional. >> I really like how every -- >> ALI DEVEY: So that was a mom who has two children with hearing loss and also has hearing loss herself and she comes to every meeting without fail. It's nice to see those who really, really enjoy the meetings. [From video]. >> Cherished family tradition. Even just sharing the stories at the end of the day or how families interact with each other and how they encourage their children to listen and talk and be included in the hearing world, and everyone shares their favorite Web sites and their favorite -- just their favorite ways of drawing out language from our kids and making it fun and making it a family activity. So I have my five-year-old son and we also have two other children, and it's so nice that they feel included when we have a special activity for our son that it's turned in to something for family and we can extend that with the group so we can carry it from sharing that activity with our own family to other families, and our connections just grow, and it really becomes something special, friendships that we'll keep forever. >> I have two favorite sessions. >> ALI DEVEY: Okay. So I'll go ahead and end there with the videos. But, you know, as you can tell, these families, this is something that really not only helps them support their child's language and communication, but it makes them feel supported and have friendships with one another, and I, again, as a parent myself, I know that that was invaluable to me. I am running out of time so I just want to thank you all for coming today. If you have any questions, you can see me afterwards and I'm happy to answer them, and thanks again for your support. Have a great day. [Applause] [End of session].