WEBVTT 1 00:00:02.936 --> 00:00:05.405 Hello, everyone. 2 00:00:05.405 --> 00:00:09.743 It's so nice to be here with all of you. 3 00:00:10.477 --> 00:00:15.382 So many of you have had connections in my life to see you all here. 4 00:00:15.415 --> 00:00:18.885 My friends, my colleagues, my supporters. 5 00:00:19.552 --> 00:00:20.253 It's an inspiration. 6 00:00:20.253 --> 00:00:21.187 I want to say thank you 7 00:00:21.187 --> 00:00:24.958 to all of you for your ongoing support and the connection that we have. 8 00:00:25.558 --> 00:00:28.728 It means more than you'll ever know. 9 00:00:28.728 --> 00:00:31.831 Just a little bit about who I am. 10 00:00:31.831 --> 00:00:34.334 I'm Karen. 11 00:00:35.335 --> 00:00:37.971 I'm from a very small town 12 00:00:37.971 --> 00:00:40.440 in northern Maine. 13 00:00:40.573 --> 00:00:43.910 I was the only deaf child in my family. In 14 00:00:44.911 --> 00:00:48.448 fact, the only deaf child in my school. 15 00:00:49.549 --> 00:00:51.751 I was the only deaf child in my entire community 16 00:00:53.253 --> 00:00:54.621 at the age of 17. 17 00:00:54.621 --> 00:00:58.358 I went to Gallaudet University, the world's only university, 18 00:00:58.358 --> 00:01:04.230 for deaf and hard of hearing individuals. 19 00:01:04.230 --> 00:01:07.500 And as so many other deaf and hard of hearing adults have experienced. 20 00:01:07.534 --> 00:01:09.302 It was a life changer. 21 00:01:09.302 --> 00:01:11.938 It really had an enormous impact on my life 22 00:01:11.938 --> 00:01:14.541 and my journey. 23 00:01:15.008 --> 00:01:18.044 I met a huge number of so many deaf adults 24 00:01:18.711 --> 00:01:22.782 there and really allowed me to do a lot of introspection on who I am 25 00:01:23.049 --> 00:01:26.686 had grown up being the only deaf child in my community, quite isolated. 26 00:01:27.153 --> 00:01:30.490 Started to ask why you? 27 00:01:30.490 --> 00:01:32.492 I graduated from Gallaudet 28 00:01:34.761 --> 00:01:36.663 and I knew it was time to go back home 29 00:01:36.663 --> 00:01:41.668 to Maine to fix the system and the wrongs that were in the system in Maine. 30 00:01:41.701 --> 00:01:44.237 There were many mistakes that had been made. 31 00:01:44.237 --> 00:01:46.773 Disconnections and I decided to go back home. 32 00:01:46.940 --> 00:01:51.344 After graduating from Gallaudet, I got married, had three children, 33 00:01:51.644 --> 00:01:55.782 and began working too, in advanced studies, and began meeting 34 00:01:55.782 --> 00:01:59.285 a number of families in the system, making connections 35 00:01:59.619 --> 00:02:02.155 to the community in Maine. 36 00:02:02.655 --> 00:02:04.991 And about 20 years on. 37 00:02:04.991 --> 00:02:07.060 So happened that I took a fall 38 00:02:10.897 --> 00:02:14.000 and I woke up in the ICU 39 00:02:16.302 --> 00:02:19.672 very discombobulated, 40 00:02:19.672 --> 00:02:22.675 and I sustained a brain injury 41 00:02:23.676 --> 00:02:27.113 and lost the ability to see. 42 00:02:27.113 --> 00:02:30.049 I lost the ability to speak, 43 00:02:30.316 --> 00:02:32.352 plus the ability to process 44 00:02:32.352 --> 00:02:37.991 cognitive leave was very disorienting, even lost the ability to say 45 00:02:40.293 --> 00:02:41.060 after 20 46 00:02:41.060 --> 00:02:45.365 years of having learned, sign, practicing and making connections 47 00:02:45.365 --> 00:02:49.235 to my new found community, that was gone in an instant. 48 00:02:52.405 --> 00:02:54.407 So in recent years 49 00:02:54.407 --> 00:02:57.043 I've had to relearn and re practice 50 00:02:57.043 --> 00:03:01.347 making those connections to my community. 51 00:03:01.948 --> 00:03:06.452 But now I'll be talking about nature, language 52 00:03:06.819 --> 00:03:09.622 and my capacity to make connections cognitively. 53 00:03:09.622 --> 00:03:12.292 And so I'm going to switch to spoken English. 54 00:03:12.425 --> 00:03:15.795 So I make certain that I'm clear when I describe my journey 55 00:03:15.795 --> 00:03:20.233 to you. 56 00:03:20.233 --> 00:03:21.201 Okay. 57 00:03:21.201 --> 00:03:24.537 Steps in a journey we all have them and 58 00:03:25.672 --> 00:03:29.842 we all have a life that we live and it takes us in many, 59 00:03:29.842 --> 00:03:32.612 many different directions. 60 00:03:32.712 --> 00:03:33.846 There's my home. 61 00:03:33.846 --> 00:03:37.884 A small town at the bottom of the map in Maine. 62 00:03:37.884 --> 00:03:42.855 No system, no resources, no support 63 00:03:44.824 --> 00:03:46.492 at this point. 64 00:03:46.859 --> 00:03:49.329 That's my mom. 65 00:03:49.963 --> 00:03:53.366 She was a powerhouse of a mom 66 00:03:54.734 --> 00:03:58.004 and I didn't realize it growing up. 67 00:03:58.004 --> 00:03:59.706 And later I came back. 68 00:03:59.706 --> 00:04:01.874 I see what she did. 69 00:04:02.008 --> 00:04:03.977 I saw what she did. 70 00:04:03.977 --> 00:04:06.212 I saw how hard she worked. 71 00:04:07.380 --> 00:04:11.918 The empowerment she gave me, the behind the scenes work she did that 72 00:04:11.918 --> 00:04:14.821 I had no idea. 73 00:04:15.989 --> 00:04:19.525 I cared for her in 7 years when she had dementia 74 00:04:20.393 --> 00:04:21.694 in my home. 75 00:04:22.528 --> 00:04:25.031 I learned so much about life 76 00:04:25.331 --> 00:04:28.067 and brains and thinking and language. 77 00:04:28.067 --> 00:04:31.604 And as time went on, she lost more 78 00:04:31.604 --> 00:04:33.940 and more of her ability to communicate. 79 00:04:34.741 --> 00:04:39.646 So there was a connection, communication, deafness, spoken language, sign, visual. 80 00:04:39.646 --> 00:04:40.913 What are you doing? 81 00:04:40.913 --> 00:04:43.449 How do I communicate with her? 82 00:04:43.449 --> 00:04:45.151 So she left stories. 83 00:04:45.151 --> 00:04:48.721 So I would read her little excerpts of like Chicken Soup 84 00:04:48.721 --> 00:04:50.723 for the Soul, books like that. 85 00:04:50.723 --> 00:04:53.793 Little paragraphs. At this time in her life. 86 00:04:53.793 --> 00:04:55.395 She wasn't talking much at all. 87 00:04:56.696 --> 00:04:59.098 There was a story about a deaf child 88 00:05:00.900 --> 00:05:02.101 and the mother, 89 00:05:02.101 --> 00:05:05.305 when she left them at the Audiologist. 90 00:05:05.305 --> 00:05:07.674 I looked over at my mom 91 00:05:07.674 --> 00:05:10.176 and there was a tear going down her face. 92 00:05:11.377 --> 00:05:14.113 She didn't remember much, but she remembered that 93 00:05:15.715 --> 00:05:18.284 and she started to talk 94 00:05:18.284 --> 00:05:21.287 and she talked about “Remember 95 00:05:21.287 --> 00:05:24.991 when I left you at the Audiologist 96 00:05:25.792 --> 00:05:28.294 and I had to leave the room. 97 00:05:28.394 --> 00:05:30.963 And Karen, I was crying. 98 00:05:31.197 --> 00:05:33.433 I'm sure you were crying.” 99 00:05:33.433 --> 00:05:36.636 She talked about her guilt, her regrets 100 00:05:37.570 --> 00:05:41.674 of not being able to connect me to deaf and hard of hearing adults. 101 00:05:41.674 --> 00:05:44.344 Peers. The social community. 102 00:05:45.345 --> 00:05:47.413 She had regret that she never met 103 00:05:47.413 --> 00:05:50.850 another parent of a deaf or hard of hearing child 104 00:05:50.883 --> 00:05:54.420 until she stepped on the floor of Gallaudet University with me. 105 00:05:55.188 --> 00:05:59.892 We were both handed a shock, but I share that with you 106 00:06:00.860 --> 00:06:01.561 because parent 107 00:06:01.561 --> 00:06:04.230 empowerment is so, so important. 108 00:06:05.498 --> 00:06:07.934 She was an empowered mom 109 00:06:07.934 --> 00:06:09.535 and she empowered me. 110 00:06:09.535 --> 00:06:12.205 Life is a journey. 111 00:06:13.039 --> 00:06:14.340 Who knows where we're going? 112 00:06:14.340 --> 00:06:18.778 If I would have ever thought when I was growing up in that little town 113 00:06:18.778 --> 00:06:22.382 in northern Maine that I would be standing here today. 114 00:06:23.149 --> 00:06:23.983 Never. 115 00:06:24.250 --> 00:06:27.720 But we don't know what's coming our way. 116 00:06:28.054 --> 00:06:30.857 So my mom always said, Karen, 117 00:06:31.858 --> 00:06:33.693 you have to dream 118 00:06:35.762 --> 00:06:39.298 and you have to have hope 119 00:06:42.769 --> 00:06:47.340 and above all else, you have to believe 120 00:06:48.608 --> 00:06:51.511 in yourself and believe in connection. 121 00:06:52.879 --> 00:06:58.951 So in front of you you will find a little pot, take the card, open it up. 122 00:06:59.552 --> 00:07:02.422 There's a quote in there just for you. 123 00:07:02.422 --> 00:07:05.091 And we’ll say that it’s from my mom. 124 00:07:05.091 --> 00:07:08.594 I don't know what the quote says, but I've loved every one that I've read. 125 00:07:09.796 --> 00:07:11.964 I heard you tonight. 126 00:07:12.198 --> 00:07:15.835 Tomorrow, when you're interacting with people. 127 00:07:15.835 --> 00:07:20.406 Take that card and give it to somebody you have never talked to. 128 00:07:21.774 --> 00:07:23.876 Meet someone new. 129 00:07:23.876 --> 00:07:26.412 Swap, share, connect, 130 00:07:28.347 --> 00:07:30.349 and believe in the power of connection 131 00:07:30.516 --> 00:07:34.921 to make a difference for deaf and hard of hearing children. 132 00:07:37.223 --> 00:07:38.291 So my why. 133 00:07:38.291 --> 00:07:42.962 I have lots and lots and lots of whys, and I'm sure you do too. 134 00:07:43.696 --> 00:07:46.732 Everyone in this room had a reason to be here today. 135 00:07:47.767 --> 00:07:50.169 These are just a handful 136 00:07:50.169 --> 00:07:52.738 a small handful of the many, 137 00:07:52.738 --> 00:07:55.408 many children that I've been so blessed to interact with. 138 00:07:56.108 --> 00:07:58.377 Their families have taught me so much. 139 00:07:59.712 --> 00:08:03.049 I look at those faces and I think of a different story. 140 00:08:03.082 --> 00:08:05.518 No two children were the same or 141 00:08:05.518 --> 00:08:07.720 no two families were the same. 142 00:08:07.720 --> 00:08:10.223 They had their own journey, their own experiences. 143 00:08:10.623 --> 00:08:14.760 And I think back at the mistakes I made early on and what I've learned. 144 00:08:15.127 --> 00:08:17.530 Every family I have talked to has 145 00:08:17.997 --> 00:08:20.833 taught me something different. 146 00:08:23.436 --> 00:08:26.405 And then my daughter, I have three children. 147 00:08:27.139 --> 00:08:29.108 They were all hearing. 148 00:08:29.308 --> 00:08:31.377 And then all of a sudden, 149 00:08:31.377 --> 00:08:34.413 Miss Adriana decides she's going to be hard of hearing. 150 00:08:34.413 --> 00:08:36.516 So I had a new hat. 151 00:08:36.849 --> 00:08:38.951 What do I do with that? 152 00:08:39.519 --> 00:08:41.888 I called Janet Stewart 153 00:08:41.888 --> 00:08:45.892 and I called another mom that I wrote many years later - years ago. 154 00:08:46.292 --> 00:08:49.595 And I said, Wow, I don't know if I know how to do this thing. 155 00:08:50.429 --> 00:08:51.764 That's not been my role. 156 00:08:51.764 --> 00:08:54.267 I've had all these other roles, but a parent. 157 00:08:55.201 --> 00:08:57.003 And then we celebrated. 158 00:08:57.003 --> 00:08:59.472 She's taken this by storm. She's excited. 159 00:08:59.472 --> 00:09:00.239 She's happy. 160 00:09:00.239 --> 00:09:02.708 She part of the community. She's fine. 161 00:09:03.543 --> 00:09:07.713 But it did give me a different perspective as I walked in that audiology booth. 162 00:09:07.713 --> 00:09:13.553 I remember thinking, Oh my, she’s not responding. 163 00:09:14.287 --> 00:09:18.658 And it was fine because I knew and I've seen many, many families go through this. 164 00:09:19.425 --> 00:09:23.496 But myself, a mom and now I have a hearing child 165 00:09:25.331 --> 00:09:27.466 who's probably going to lose her hearing. 166 00:09:27.466 --> 00:09:31.037 That’s what happened with mom but we'll see. 167 00:09:32.038 --> 00:09:33.739 So let's talk about empowerment. 168 00:09:33.739 --> 00:09:36.809 That was the title of the session today. 169 00:09:36.809 --> 00:09:41.280 Just so that we have shared understanding, which I think is so important 170 00:09:41.781 --> 00:09:45.885 of what empowerment means and I'm going to offer this definition. 171 00:09:45.885 --> 00:09:50.656 Increasing the capacity of individuals or groups to make choices 172 00:09:51.524 --> 00:09:53.726 and to transform those choices 173 00:09:53.726 --> 00:09:56.529 into desired action or outcomes. 174 00:09:57.930 --> 00:10:00.900 Now, think about that as we go through the next few slides. 175 00:10:02.234 --> 00:10:04.937 I'm going to back up a little bit. 176 00:10:05.371 --> 00:10:06.305 Babies 177 00:10:06.772 --> 00:10:09.308 when families are expecting an infant. 178 00:10:09.976 --> 00:10:13.312 This is kind of the image that they have in their mind, right? 179 00:10:14.046 --> 00:10:18.217 A little baby, peachy color, 180 00:10:18.684 --> 00:10:21.420 wrapped up in a blanket. 181 00:10:23.089 --> 00:10:25.091 And what happens 182 00:10:26.759 --> 00:10:28.794 to our families? 183 00:10:28.794 --> 00:10:30.129 Wires, tests. 184 00:10:31.564 --> 00:10:33.099 What do you mean, deaf? 185 00:10:33.099 --> 00:10:33.833 What do you mean? 186 00:10:33.833 --> 00:10:34.600 I invite 187 00:10:37.403 --> 00:10:58.624 you to watch the slide. 188 00:11:00.926 --> 00:11:03.562 We have to make sure that our families are 189 00:11:04.797 --> 00:11:06.632 not getting lost. 190 00:11:06.632 --> 00:11:10.469 Lost in the shuffle of overwhelming information. 191 00:11:11.837 --> 00:11:14.473 I'm going to tell you a little story. 192 00:11:14.473 --> 00:11:16.108 Years ago, 193 00:11:16.942 --> 00:11:19.912 I was a young interventionist 194 00:11:19.912 --> 00:11:21.847 and I went to a home 195 00:11:21.847 --> 00:11:24.483 and I showed up at the doorway. 196 00:11:24.650 --> 00:11:27.420 And this father said, You deal with her 197 00:11:28.287 --> 00:11:31.257 and he walked out. 198 00:11:31.257 --> 00:11:32.158 Okay. 199 00:11:32.358 --> 00:11:35.161 So I go ready to deal with her. 200 00:11:35.561 --> 00:11:37.997 I couldn't find her. 201 00:11:37.997 --> 00:11:40.866 And I'm looking in the kitchen, looking through the living rooms 202 00:11:40.866 --> 00:11:43.369 and felt totally awkward walking through this house. 203 00:11:43.936 --> 00:11:46.572 But he had told me to deal with her. 204 00:11:46.572 --> 00:11:47.940 So on I go. 205 00:11:47.940 --> 00:11:53.979 I came walking into the living room, and in the corner there was a car seat. 206 00:11:53.979 --> 00:11:56.282 A car seat with a baby. 207 00:11:57.416 --> 00:12:00.920 Three month old ish. 208 00:12:00.920 --> 00:12:01.987 And I look at this baby. 209 00:12:01.987 --> 00:12:05.491 This is who he was talking about? 210 00:12:05.491 --> 00:12:09.328 So I chat with the baby, I look at the baby, there’s got to be a mom. 211 00:12:10.096 --> 00:12:12.798 I was supposed to meet 212 00:12:16.335 --> 00:12:16.469 with Mom. 213 00:12:16.469 --> 00:12:17.303 Over in the other corner is mom, 214 00:12:18.537 --> 00:12:20.506 crunched over, 215 00:12:20.573 --> 00:12:23.442 quiet, sobbing, 216 00:12:23.442 --> 00:12:27.446 sobbing uncontrollably. 217 00:12:27.880 --> 00:12:30.182 What do I do with this? 218 00:12:30.182 --> 00:12:32.318 I had a checklist that was supposed to have mom sign. 219 00:12:32.318 --> 00:12:33.719 Do you want to sign, do you want to talk? 220 00:12:33.719 --> 00:12:36.956 She was supposed to sign it on that first visit. 221 00:12:38.758 --> 00:12:40.392 What do I do with my checklist? 222 00:12:40.392 --> 00:12:42.795 Crying and crying. The babies over here. 223 00:12:44.029 --> 00:12:46.198 It was that day that I knew we 224 00:12:46.198 --> 00:12:48.801 we had to make a change, that this was wrong. 225 00:12:49.502 --> 00:12:50.603 This was wrong. 226 00:12:50.603 --> 00:12:55.107 That our system was set up to force families to make a choice 227 00:12:55.941 --> 00:12:59.245 early, early on. 228 00:12:59.478 --> 00:13:03.149 Let's think about the wonder of a newborn, all the things 229 00:13:03.149 --> 00:13:06.952 we know and love about babies and connections. 230 00:13:08.020 --> 00:13:10.055 Why do we do deaf children different? 231 00:13:11.090 --> 00:13:14.827 Why are we rushing and hurrying and sending them here and there? 232 00:13:14.827 --> 00:13:16.896 We don’t do that with all babies. 233 00:13:17.596 --> 00:13:21.433 Why do we do it with deaf children? 234 00:13:22.067 --> 00:13:24.436 How can we together 235 00:13:24.436 --> 00:13:27.673 develop a system that slow things down 236 00:13:28.707 --> 00:13:30.309 just a little bit? 237 00:13:30.609 --> 00:13:33.145 While recognizing the critical importance 238 00:13:33.546 --> 00:13:35.848 of the window in time for language development. 239 00:13:35.981 --> 00:13:37.750 That's our task, right? 240 00:13:37.750 --> 00:13:40.119 We want these children, all children, 241 00:13:40.186 --> 00:13:42.354 to develop language. 242 00:13:43.956 --> 00:13:45.858 So I would suggest that 243 00:13:45.858 --> 00:13:48.160 the first steps you might want to think about 244 00:13:49.061 --> 00:13:51.330 is that language comes from attachment. 245 00:13:52.498 --> 00:13:54.033 It comes from connection. 246 00:13:54.033 --> 00:13:56.435 That constant communication 247 00:13:58.204 --> 00:14:01.440 and bonding, bonding with moms and dads. 248 00:14:03.309 --> 00:14:05.744 And then think about what families are saying. 249 00:14:07.146 --> 00:14:08.981 Learn from their stories. 250 00:14:08.981 --> 00:14:14.253 What's working in your state and what's not working. 251 00:14:14.920 --> 00:14:19.325 So as Janet shared, I've been working on my doctorate for quite a while. 252 00:14:19.325 --> 00:14:21.660 And it's coming, is coming, is coming. 253 00:14:21.660 --> 00:14:27.099 But I have data now, so preliminary data of what I'm looking at 254 00:14:27.600 --> 00:14:31.604 has been really fascinating to me and not too many surprises, 255 00:14:31.604 --> 00:14:33.739 but it's been fun to see it happen. 256 00:14:34.473 --> 00:14:37.576 So what I'm exploring is - I’m investigating 257 00:14:37.576 --> 00:14:40.913 families perception of empowerment. 258 00:14:40.946 --> 00:14:41.680 It means 259 00:14:42.781 --> 00:14:43.883 exploring 260 00:14:43.883 --> 00:14:46.552 language, communication opportunities. 261 00:14:47.219 --> 00:14:50.389 Now, this practice is a relatively new practice in Maine, 262 00:14:51.390 --> 00:14:55.060 but we have been doing early intervention evolution in Maine for years, 263 00:14:55.861 --> 00:14:59.431 trying to figure out how do we balance the attachment and bonding 264 00:14:59.999 --> 00:15:03.302 and going through and going through and going through? 265 00:15:03.302 --> 00:15:07.072 Well, one of our early interventionists, who is here today, 266 00:15:08.340 --> 00:15:09.241 she said. 267 00:15:09.241 --> 00:15:11.543 We got to make it more comprehensive. 268 00:15:11.543 --> 00:15:16.515 We've got to balance this attachment with bonding and still move forward. 269 00:15:16.982 --> 00:15:18.918 We've got to be comprehensive. 270 00:15:18.918 --> 00:15:23.489 We've got to be concise with that and make sure as to why this is happening. 271 00:15:24.523 --> 00:15:26.892 That's, of course, 272 00:15:26.892 --> 00:15:30.062 kind of what we've been doing that we haven't had much depth 273 00:15:31.130 --> 00:15:34.199 in. And she did a phenomenal job. 274 00:15:35.668 --> 00:15:40.272 So impact the impact that I found. 275 00:15:40.873 --> 00:15:42.074 I interviewed twelve families. In-depth interviews, long interviews. 276 00:15:46.145 --> 00:15:49.848 11 out of 12 277 00:15:50.449 --> 00:15:55.321 mentioned the cognitive impact of meeting deaf and hard of hearing adults. 278 00:15:55.754 --> 00:15:59.058 When asked what aspect of the early intervention journey 279 00:15:59.425 --> 00:16:02.227 was most impactful, 280 00:16:02.227 --> 00:16:06.031 and I wonder why that is. 281 00:16:06.198 --> 00:16:07.366 Another thing 282 00:16:07.366 --> 00:16:12.071 that came up for me, was meeting deaf and hard of hearing adults, the impact 283 00:16:12.071 --> 00:16:16.809 of parent connections, the importance of following families leads, 284 00:16:17.343 --> 00:16:20.479 and an overwhelming amount of information. 285 00:16:20.479 --> 00:16:23.415 Some of you may be surprised by this. 286 00:16:23.415 --> 00:16:27.553 Some of you may not be surprised at all because it's what you believe in, 287 00:16:28.887 --> 00:16:34.026 but it was fun to see it come to fruition in this way. 288 00:16:34.159 --> 00:16:37.129 I'm going to share some quotes with you because, quotes are impactful 289 00:16:38.230 --> 00:16:41.166 in regards to overwhelming amount of information. 290 00:16:41.333 --> 00:16:45.270 One parent said, I remember there being a notebook. 291 00:16:46.105 --> 00:16:49.074 I think I still have the notebook in my office 292 00:16:49.742 --> 00:16:54.513 and just being like, wow, there's a notebook. 293 00:16:54.513 --> 00:16:55.681 And that was overwhelming. 294 00:16:56.915 --> 00:16:59.785 You know, I had a baby and I was like, 295 00:16:59.785 --> 00:17:03.989 I don't know when I'm going to have time to read the notebook. 296 00:17:03.989 --> 00:17:08.761 And I remember thinking it seemed like a lot. 297 00:17:09.728 --> 00:17:12.931 I I was supposed to read and I had a baby. 298 00:17:14.800 --> 00:17:16.635 Another mom said, So 299 00:17:16.635 --> 00:17:19.872 kind of all at once everything happened. 300 00:17:20.672 --> 00:17:24.376 Everyone started coming in and I had a really hard time at first, 301 00:17:24.977 --> 00:17:27.479 differentiating all the different groups 302 00:17:27.913 --> 00:17:30.616 and what their roles were. 303 00:17:30.649 --> 00:17:33.685 It was a lot of moving parts. 304 00:17:33.685 --> 00:17:36.789 I was very, very grateful, but it was overwhelming. 305 00:17:38.090 --> 00:17:40.359 You could think that people could just name 306 00:17:40.359 --> 00:17:43.495 one person to call me 307 00:17:44.129 --> 00:17:45.330 and a final one. 308 00:17:45.330 --> 00:17:50.903 I remember they would give me the packets of stuff like many packets. 309 00:17:51.336 --> 00:17:56.775 To be honest, they're all still in a pile in my closet. 310 00:17:56.775 --> 00:17:57.676 Who has time? 311 00:17:58.811 --> 00:18:00.813 But the guilt I felt 312 00:18:00.813 --> 00:18:05.517 for not reading that was huge. 313 00:18:05.517 --> 00:18:08.720 Importance of following families lead. 314 00:18:08.720 --> 00:18:13.358 Really just focus on meeting us parents where we are at 315 00:18:13.358 --> 00:18:16.361 because the stories are all different 316 00:18:18.297 --> 00:18:20.199 and you never know what just happened 317 00:18:20.199 --> 00:18:23.535 before you walk through that door. 318 00:18:23.702 --> 00:18:26.238 I think the focus needs to be on relationships 319 00:18:27.406 --> 00:18:30.442 and connecting and just following what the family is 320 00:18:30.442 --> 00:18:33.145 ready for. 321 00:18:33.745 --> 00:18:38.117 I think sometimes they think they have to tell you so much information, 322 00:18:39.017 --> 00:18:41.520 but really they should just support a parent 323 00:18:42.754 --> 00:18:44.857 by letting them wait. 324 00:18:45.224 --> 00:18:46.558 Just be there for them. 325 00:18:46.558 --> 00:18:49.328 Actually be there. 326 00:18:49.328 --> 00:18:52.164 Importance of parent connection. 327 00:18:52.164 --> 00:18:54.366 It was a good feeling knowing that there was 328 00:18:54.366 --> 00:18:58.103 someone else out there that had gone through this crisis, 329 00:18:59.071 --> 00:19:01.840 especially since her daughter was already older. 330 00:19:02.341 --> 00:19:07.346 I could actually look to the future and not just 5 minutes from now. 331 00:19:09.114 --> 00:19:11.950 The first time we ever met another parent, it was amazing. 332 00:19:11.984 --> 00:19:15.721 It is so great to have that community. 333 00:19:16.388 --> 00:19:19.758 I can still remember that parent giving us advice. 334 00:19:19.758 --> 00:19:21.460 That was life changing. 335 00:19:21.460 --> 00:19:25.230 I was so overwhelmed by all the things I was supposed to be learning. 336 00:19:26.265 --> 00:19:30.502 And she said, You understand the communication 337 00:19:31.637 --> 00:19:33.672 you are his Mom. 338 00:19:33.872 --> 00:19:36.608 He cries, you know what he wants. 339 00:19:37.643 --> 00:19:38.744 He smiles. 340 00:19:38.744 --> 00:19:41.413 And the connection is real. 341 00:19:41.413 --> 00:19:43.582 Your touch sooths him. 342 00:19:44.716 --> 00:19:46.718 That was the first time 343 00:19:46.718 --> 00:19:50.222 I felt I could do this. 344 00:19:50.956 --> 00:19:53.725 The impact of meeting deaf and hard of hearing adults. 345 00:19:54.726 --> 00:19:56.795 We need to meet someone that is deaf 346 00:19:56.795 --> 00:20:00.666 or hard of hearing earlier, an adult 347 00:20:00.933 --> 00:20:06.238 or even a child in their teenage years, like going to high school 348 00:20:06.972 --> 00:20:11.143 so they can tell that their experience of how they felt 349 00:20:12.511 --> 00:20:14.179 because 350 00:20:14.446 --> 00:20:16.181 it's a big thing 351 00:20:16.348 --> 00:20:19.851 and because we're making decisions for our daughter 352 00:20:21.386 --> 00:20:23.789 and thinking what's best for her. 353 00:20:23.789 --> 00:20:26.758 But at the same time, she can't tell us how she feels. 354 00:20:27.726 --> 00:20:30.963 We need someone who's been there. 355 00:20:30.963 --> 00:20:33.799 Meeting another adult who is living that life 356 00:20:33.799 --> 00:20:35.834 and living that life successfully. 357 00:20:36.935 --> 00:20:38.704 How do they navigate it? 358 00:20:38.704 --> 00:20:42.241 That's what we really need when you’re just up against 359 00:20:42.241 --> 00:20:46.011 something that's really, really scary. 360 00:20:46.111 --> 00:20:47.613 My own instinct was 361 00:20:47.613 --> 00:20:49.982 I needed to talk to the deaf community 362 00:20:51.583 --> 00:20:54.586 to uncover their experience and their upbringing 363 00:20:54.586 --> 00:20:58.257 and their language, their access, and how they interact with their families. 364 00:21:00.058 --> 00:21:03.128 When our deaf mentor said, The deaf 365 00:21:03.128 --> 00:21:06.732 community hears that a baby is deaf 366 00:21:07.833 --> 00:21:10.636 and they're happy. 367 00:21:10.969 --> 00:21:12.971 I thought, Wow. 368 00:21:12.971 --> 00:21:17.309 To have somebody say that to me, it made me happy. 369 00:21:19.077 --> 00:21:21.213 What a nice way to think of this. 370 00:21:22.247 --> 00:21:26.051 This may sound funny, but I became more excited 371 00:21:27.152 --> 00:21:29.688 that he gets to be part of a new community 372 00:21:30.422 --> 00:21:34.660 and I get to be part of a new community that's so accepting 373 00:21:35.494 --> 00:21:37.929 and we get to be part of that community together. 374 00:21:38.864 --> 00:21:40.432 I’ll read one more. 375 00:21:40.832 --> 00:21:43.201 If I could have met them earlier, 376 00:21:43.201 --> 00:21:47.906 met more than one, got a broader understanding of the many different ways 377 00:21:47.939 --> 00:21:51.843 that deaf and hard of hearing people live and exist in the world. 378 00:21:52.978 --> 00:21:55.180 It would have made those first few weeks easier. 379 00:21:56.315 --> 00:22:00.485 So I had many, many quotes, many, many more and they will be on the side. 380 00:22:00.485 --> 00:22:02.721 If you want to read them later. 381 00:22:03.088 --> 00:22:05.290 A quick story about a father. 382 00:22:06.224 --> 00:22:08.493 His early interventionists came to the house 383 00:22:10.228 --> 00:22:10.696 and the 384 00:22:10.696 --> 00:22:13.899 interventionist was asking how did the visit go at the audiologist? 385 00:22:14.833 --> 00:22:17.235 He said, All I know 386 00:22:17.235 --> 00:22:19.471 is they said something about fruit. 387 00:22:21.073 --> 00:22:22.507 Now, those of us that understand 388 00:22:22.507 --> 00:22:25.310 audiology practice, it's a speech banana. 389 00:22:25.911 --> 00:22:30.482 All he knew is it is a banana and fruit and he got nothing 390 00:22:30.649 --> 00:22:33.452 out of that audiology visit. 391 00:22:33.452 --> 00:22:35.287 So we knew the early interventionist 392 00:22:35.287 --> 00:22:37.389 had to back way up 393 00:22:38.490 --> 00:22:41.126 and get him grounded and connected. 394 00:22:42.194 --> 00:22:44.463 And then I'm sure they talked about the speech banana 395 00:22:45.864 --> 00:22:47.466 and sometimes 396 00:22:47.466 --> 00:22:49.801 sometimes they just want to go to the beach. 397 00:22:51.236 --> 00:22:53.538 There was one day I showed up at a family's house, 398 00:22:54.706 --> 00:22:57.676 open the door, ready to see this baby and his mom, 399 00:22:57.676 --> 00:23:01.346 and she said, Do you have to be here? 400 00:23:01.847 --> 00:23:05.183 Well, at that time, it's 1:00 on Wednesday. 401 00:23:05.183 --> 00:23:06.718 And she said, 402 00:23:07.853 --> 00:23:09.988 I don't want to do this anymore. 403 00:23:09.988 --> 00:23:11.823 It's hard. 404 00:23:11.823 --> 00:23:12.958 I don't want to go to the audiologist. 405 00:23:12.958 --> 00:23:14.793 I don't want to go to the doctor. 406 00:23:14.793 --> 00:23:17.462 I don't want to do anything. 407 00:23:17.462 --> 00:23:21.833 I love our visits, but I really want to go to the beach. 408 00:23:21.833 --> 00:23:23.635 I said go to the beach. 409 00:23:23.635 --> 00:23:26.505 Call me when you want me to come back. 410 00:23:26.671 --> 00:23:28.407 It was a few weeks. 411 00:23:28.407 --> 00:23:31.343 I started to get a little worried. 412 00:23:31.343 --> 00:23:33.378 And then she called, said, Guess what? 413 00:23:33.412 --> 00:23:35.414 I'm back from the beach. Great! 414 00:23:35.414 --> 00:23:39.084 We went and had a great visit on another night, 415 00:23:39.084 --> 00:23:42.320 and I bet that mother used all of these strategies 416 00:23:42.320 --> 00:23:46.324 that she learned from early intervention at the beach. 417 00:23:46.491 --> 00:23:50.896 So how exactly do we create a system 418 00:23:51.596 --> 00:23:55.801 that follows families leads and embeds deaf and hard of hearing adults 419 00:23:56.168 --> 00:23:58.937 and parents into the system and balances 420 00:23:58.937 --> 00:24:03.308 the overwhelming amount of information families are processing 421 00:24:03.875 --> 00:24:07.846 while still providing information and a focus on language development. 422 00:24:08.613 --> 00:24:11.883 They have to come together right? 423 00:24:11.883 --> 00:24:14.352 And it starts with me and start with you. 424 00:24:14.386 --> 00:24:15.720 It starts with one person 425 00:24:16.721 --> 00:24:18.089 and it’s stunning to me what 426 00:24:18.089 --> 00:24:21.393 kind of an impact one can have. 427 00:24:22.027 --> 00:24:23.028 I love this. 428 00:24:23.028 --> 00:24:25.464 I love this because I've gotten this all the time. 429 00:24:26.031 --> 00:24:28.233 It's impossible said pride. 430 00:24:29.134 --> 00:24:31.503 It's risky said experience. 431 00:24:31.503 --> 00:24:34.639 It's pointless said reason. 432 00:24:34.639 --> 00:24:37.209 But the heart said give it a try. 433 00:24:37.209 --> 00:24:39.144 So we're going to try today. 434 00:24:39.144 --> 00:24:44.583 I want you to think a little bit about your state system and ask these questions. 435 00:24:45.450 --> 00:24:49.621 There's your state system, provide coordinated family services 436 00:24:49.888 --> 00:24:52.724 and have one point of contact? 437 00:24:52.724 --> 00:24:56.094 And I would add that everybody trusts. 438 00:24:56.094 --> 00:24:58.830 Does your system fully understand the family environment? 439 00:24:59.531 --> 00:25:02.834 Do they conduct assessments that are truly family-centered? 440 00:25:04.202 --> 00:25:06.438 Do they develop outcomes that are measurable 441 00:25:07.472 --> 00:25:10.509 and clear and specific to the families priorities? 442 00:25:11.643 --> 00:25:14.446 Do they empower families to continue intervention 443 00:25:14.913 --> 00:25:17.849 between visits? 444 00:25:17.849 --> 00:25:20.585 Do they integrate deaf and hard of hearing adults? 445 00:25:20.585 --> 00:25:23.221 And do they integrate parent to parents support? 446 00:25:25.090 --> 00:25:25.690 And I would 447 00:25:25.690 --> 00:25:29.127 add does your system have a process 448 00:25:29.628 --> 00:25:31.696 for tracking language acquisition. 449 00:25:32.864 --> 00:25:36.568 This slide shows the many states that have now passed 450 00:25:37.068 --> 00:25:40.639 legislation, and it could thank you to Shay 451 00:25:40.639 --> 00:25:43.842 and Julie who are here today that started this amazing 452 00:25:45.844 --> 00:25:46.011 movement. 453 00:25:46.011 --> 00:25:50.715 With this movement, We are able to support families and empower them 454 00:25:51.416 --> 00:25:55.587 so they know if their child is making progress or not. 455 00:25:55.587 --> 00:25:58.623 Therapists usually 456 00:25:59.824 --> 00:25:59.991 have a good idea. 457 00:25:59.991 --> 00:26:01.393 Doctors kind of have an idea. 458 00:26:01.393 --> 00:26:04.863 But we want parents to be the ones 459 00:26:04.863 --> 00:26:08.833 to say that assessment that we've been doing at 6 months, 460 00:26:08.833 --> 00:26:13.305 12 months, 18 months when we're not making the mark. 461 00:26:14.272 --> 00:26:16.741 Or yeah, I'm doing pretty good. 462 00:26:16.741 --> 00:26:20.912 And with that we want to make sure that discussion is fluid 463 00:26:21.413 --> 00:26:23.915 and malleable and flexible 464 00:26:24.382 --> 00:26:26.685 and open for families to change. 465 00:26:27.419 --> 00:26:30.255 If it's not working or to keep going 466 00:26:30.255 --> 00:26:33.692 full force if we're on the right track. 467 00:26:33.692 --> 00:26:39.397 This one, does your system shift the dynamic 468 00:26:40.365 --> 00:26:42.334 as much as you can 469 00:26:42.334 --> 00:26:47.072 so you hear the truth from people that have had lived experience, 470 00:26:47.772 --> 00:26:50.275 listen intently and honor their experience. 471 00:26:50.275 --> 00:26:53.244 Their experience. 472 00:26:53.411 --> 00:26:54.479 Think about that. 473 00:26:54.479 --> 00:26:59.551 In your state, are you honoring lived experiences? 474 00:27:01.086 --> 00:27:02.887 A little bit of advice as to 475 00:27:02.887 --> 00:27:06.491 how do you start this big movement If you want to shake this data, 476 00:27:07.525 --> 00:27:08.927 get it done. 477 00:27:08.927 --> 00:27:13.832 You've got to learn your system, learn the medical system, the audiology system, 478 00:27:13.832 --> 00:27:18.837 early intervention, education, and the legislature. 479 00:27:18.837 --> 00:27:21.539 What laws and rules do they have to follow? 480 00:27:22.440 --> 00:27:24.309 Who are the decision makers? 481 00:27:24.309 --> 00:27:26.745 Where does the funding come from in their states? 482 00:27:27.212 --> 00:27:28.246 Which agencies, groups, 483 00:27:28.246 --> 00:27:31.449 and providers work with children who are deaf or hard of hearing? 484 00:27:32.517 --> 00:27:35.520 How are parents integrated and how are deaf adults integrated? 485 00:27:35.954 --> 00:27:36.454 And after you’ve learned all of that 486 00:27:36.454 --> 00:27:41.760 and you study your state, think about these family stories. 487 00:27:41.760 --> 00:27:43.828 Think about the why 488 00:27:44.763 --> 00:27:48.266 and how you can make a connection 489 00:27:48.333 --> 00:27:50.735 look into different agencies 490 00:27:50.735 --> 00:27:54.839 and hospitals and brand agencies, 491 00:27:55.674 --> 00:27:59.611 learn their strategic plan, learn their workplan, 492 00:28:00.412 --> 00:28:04.349 learn their vision, their mission, and their values. 493 00:28:05.116 --> 00:28:08.420 The more you learn, the more you can get in 494 00:28:08.420 --> 00:28:10.989 and figure out what your next steps might be. 495 00:28:11.823 --> 00:28:14.659 And then you learn how to approach. 496 00:28:14.659 --> 00:28:17.829 So you've learned, you’ve listened, you've read, you’ve thought. 497 00:28:18.563 --> 00:28:21.900 Take pieces from your learning 498 00:28:21.900 --> 00:28:24.436 and merge it with the principles 499 00:28:24.436 --> 00:28:26.871 of family centered early intervention. 500 00:28:28.473 --> 00:28:31.609 Show them the agency, the audiologist, 501 00:28:31.609 --> 00:28:34.145 the hospital, and most importantly, the legislature, 502 00:28:35.447 --> 00:28:38.349 where your vision for your state 503 00:28:38.550 --> 00:28:42.454 fits with what they're doing because they don't usually think it does. 504 00:28:43.621 --> 00:28:47.892 There were many times that I showed up at the Capitol in the state 505 00:28:47.892 --> 00:28:51.930 House, the hospital, and said, I have an idea, I have an idea. 506 00:28:52.864 --> 00:28:54.232 But it wasn't until I 507 00:28:54.232 --> 00:28:57.635 started linking systems that they listen. 508 00:28:58.336 --> 00:29:01.606 They say, Oh, she's kind of talking our language. 509 00:29:01.606 --> 00:29:03.942 She knows what she's talking about. 510 00:29:04.676 --> 00:29:06.244 But it was a lot of homework. 511 00:29:06.244 --> 00:29:08.012 But it was good homework. 512 00:29:08.012 --> 00:29:11.950 And the more I was able to match, then we could kind of move forward. 513 00:29:12.350 --> 00:29:15.086 Before I was totally stuck. 514 00:29:15.086 --> 00:29:17.789 But you also had to give 515 00:29:18.189 --> 00:29:19.691 and you had to adapt. 516 00:29:19.691 --> 00:29:21.993 You have to collaborate. 517 00:29:22.093 --> 00:29:25.730 So as you're thinking about these discussions, you may have in this state, 518 00:29:26.998 --> 00:29:30.602 I encourage you to do some reflection 519 00:29:30.602 --> 00:29:35.073 is what you what your vision. 520 00:29:35.073 --> 00:29:38.643 Truly a family centered early intervention 521 00:29:38.643 --> 00:29:41.946 statewide model, 522 00:29:41.946 --> 00:29:46.284 or is there something that's going to help your agency grow? 523 00:29:46.284 --> 00:29:48.119 Is it going to give you more money? 524 00:29:48.119 --> 00:29:49.988 They're going to give you whatever 525 00:29:51.189 --> 00:29:52.323 the fact. 526 00:29:52.590 --> 00:29:55.160 Make sure that before you move forward 527 00:29:55.760 --> 00:30:00.031 and say you want to have one system, that that's truly what you want. 528 00:30:00.632 --> 00:30:02.534 It's not what you want. 529 00:30:02.534 --> 00:30:06.571 Then back up a little bit and think, why. 530 00:30:06.571 --> 00:30:09.407 So stakeholders think again about your state. 531 00:30:10.241 --> 00:30:14.179 What's the strength of your connection to the various many, 532 00:30:14.179 --> 00:30:15.880 many stakeholders in your state? 533 00:30:15.880 --> 00:30:19.851 The doctors, the thereapists, 534 00:30:19.851 --> 00:30:23.321 the early interventionists, school for the Deaf, the spoken language agency 535 00:30:24.823 --> 00:30:28.893 the hospitals and all the people in your state, what's your connection? 536 00:30:29.561 --> 00:30:31.596 Is is strong, is it weak, 537 00:30:32.497 --> 00:30:36.000 and what have you got to foster connection and collaborate? 538 00:30:36.901 --> 00:30:40.238 What have you done and what do you think you might want to do? 539 00:30:41.472 --> 00:30:46.077 And the greatest lesson I ever learned is I have a lot to learn. 540 00:30:46.077 --> 00:30:49.881 When I was an early interventionist, I think I kind of knew what I was doing 541 00:30:50.548 --> 00:30:52.951 looking back, Boy 542 00:30:52.951 --> 00:30:56.654 and I made so many mistakes in the years, so many mistakes 543 00:30:56.654 --> 00:31:01.259 for collaboration and mistakes for trying to roll the system forward. 544 00:31:01.292 --> 00:31:02.160 It's that that 545 00:31:03.161 --> 00:31:05.330 I've learned to back away. 546 00:31:05.330 --> 00:31:07.532 And that's not always easy. 547 00:31:07.532 --> 00:31:09.701 But the more I got away 548 00:31:09.701 --> 00:31:13.438 and I saw the systems that I'm creating behind the scenes, work hard 549 00:31:13.438 --> 00:31:16.641 and somebody else doesn't, this person does it. 550 00:31:16.641 --> 00:31:19.644 That works. 551 00:31:19.944 --> 00:31:24.682 So your job is to go home and say, who can I invite to my table, 552 00:31:25.750 --> 00:31:29.587 whether it's at your kitchen, at home, maybe you're going to need a restaurant 553 00:31:29.621 --> 00:31:32.190 and maybe you can meet at their place of employment. 554 00:31:33.157 --> 00:31:35.526 Who do you want to invite, who do you want to talk to? 555 00:31:37.095 --> 00:31:39.364 And start with a cup of coffee right. 556 00:31:40.899 --> 00:31:44.936 Sit down and have a chat. 557 00:31:44.936 --> 00:31:48.606 But before you enter that conversation 558 00:31:49.307 --> 00:31:52.410 with somebody who may have very different parts 559 00:31:52.410 --> 00:31:57.115 and you forget about your day, forget about the traffic jam, 560 00:31:57.782 --> 00:32:00.718 forget about your child screaming as you walk out the door, 561 00:32:01.552 --> 00:32:03.788 Forget about the coffee that you spilled. 562 00:32:03.788 --> 00:32:06.391 Prepare to enter the conversation 563 00:32:07.525 --> 00:32:10.028 and be present. 564 00:32:10.261 --> 00:32:14.232 Now, I love this visual that you used it with families so many times, 565 00:32:14.232 --> 00:32:16.868 and I've used it with early interventionist when I've trained them. 566 00:32:18.002 --> 00:32:20.038 When you're walking into that meeting 567 00:32:20.038 --> 00:32:22.674 for the first time, maybe up with the legislator, 568 00:32:23.741 --> 00:32:27.045 you have a lot of feelings and you have expectations. 569 00:32:28.112 --> 00:32:29.480 They do too. 570 00:32:29.747 --> 00:32:33.117 You have a lot of information that you want to give and probably 571 00:32:33.117 --> 00:32:36.354 a limited amount of time they probably did too. 572 00:32:37.055 --> 00:32:38.890 You have opinions. 573 00:32:38.890 --> 00:32:40.224 They do too. 574 00:32:40.591 --> 00:32:43.494 Dialog in a new way. 575 00:32:43.494 --> 00:32:47.265 They’re having a dialog and they're going to ask for your respect 576 00:32:48.633 --> 00:32:51.369 and your journey through this process in this way, 577 00:32:51.602 --> 00:32:54.639 and you take the time to do it live care. 578 00:32:55.506 --> 00:32:58.710 You get to a place of rapport and trust building. 579 00:33:00.144 --> 00:33:00.712 These are some 580 00:33:00.712 --> 00:33:03.214 tools that I always have in my pocket 581 00:33:03.748 --> 00:33:07.852 because sometimes the conversation doesn't go the way I think it should. 582 00:33:08.286 --> 00:33:11.589 So if you're reflecting back and you say, if that is 583 00:33:11.589 --> 00:33:15.860 what if you're saying and then they say good or no, that's not what I meant. 584 00:33:15.893 --> 00:33:17.929 Well, yeah, that's exactly what I meant. 585 00:33:18.930 --> 00:33:20.264 Extending and clarifying. 586 00:33:20.264 --> 00:33:24.035 Showing you are interested. 587 00:33:24.035 --> 00:33:25.069 Acknowledging. 588 00:33:25.069 --> 00:33:29.173 I can appreciate that. 589 00:33:29.173 --> 00:33:31.709 Questioning and open ended questions. 590 00:33:32.210 --> 00:33:35.313 What did you think about...? 591 00:33:35.313 --> 00:33:38.816 Summarizing, synthesizing it appears that... 592 00:33:40.218 --> 00:33:41.953 Checking perceptions. 593 00:33:41.953 --> 00:33:43.654 You seem to be saying... 594 00:33:43.654 --> 00:33:46.290 Am I on the right track? 595 00:33:46.290 --> 00:33:48.259 And be quiet. 596 00:33:48.259 --> 00:33:51.295 That's really hard for me to do in this conversation. 597 00:33:52.697 --> 00:33:54.866 But I've learned that practice, 598 00:33:55.033 --> 00:33:58.202 practice getting quiet and letting somebody else talk. 599 00:33:58.436 --> 00:34:02.540 But it's really hard. 600 00:34:02.540 --> 00:34:06.744 And then when you leave that session, that meeting, that interaction, 601 00:34:08.012 --> 00:34:09.881 how was information exchanged? 602 00:34:09.881 --> 00:34:11.015 Let me think about that. 603 00:34:11.015 --> 00:34:13.518 What did I do? What did they do? 604 00:34:13.518 --> 00:34:17.422 What strength did I notice in myself and in them? 605 00:34:17.422 --> 00:34:21.692 What insights did we share? 606 00:34:21.692 --> 00:34:24.062 And then, of course, we need to be kind. 607 00:34:24.896 --> 00:34:26.531 Sometimes we're not so kind. 608 00:34:26.531 --> 00:34:27.999 This is hard work. 609 00:34:27.999 --> 00:34:29.133 Sometimes we’re grumpy. 610 00:34:29.133 --> 00:34:31.135 Sometimes we’re frustrated. 611 00:34:31.135 --> 00:34:32.370 But we’ve got to do better. 612 00:34:32.370 --> 00:34:34.272 We got to be kind 613 00:34:34.572 --> 00:34:36.574 and we got to sometimes 614 00:34:36.574 --> 00:34:41.012 agree to disagree because we will and that's okay 615 00:34:41.712 --> 00:34:45.149 as long as we do it with kindness. 616 00:34:45.183 --> 00:34:46.684 Now you have to build a team. 617 00:34:46.684 --> 00:34:49.887 You've had interaction in your discussions with one 618 00:34:49.887 --> 00:34:52.757 or two people and it's going to take a lot. 619 00:34:52.890 --> 00:34:56.427 There's a lot of people out there that need to know what we want them to do, 620 00:34:57.261 --> 00:34:58.696 so try to pull them together. 621 00:35:00.064 --> 00:35:00.598 And if you're 622 00:35:00.598 --> 00:35:03.000 fortunate enough to get a group together 623 00:35:03.768 --> 00:35:05.970 before you start the hard work 624 00:35:06.404 --> 00:35:09.407 of building a family centered coordinated system, 625 00:35:10.141 --> 00:35:12.810 get to know each other, do something fun 626 00:35:13.611 --> 00:35:17.348 and outside, go to the beach, maybe, I don't know, something that's fun. 627 00:35:17.348 --> 00:35:19.450 So you get to know each other as people, 628 00:35:19.951 --> 00:35:23.855 and not just the philosophy and the opinions. 629 00:35:23.855 --> 00:35:28.392 When you get to know each other as people, that's the magic. 630 00:35:29.961 --> 00:35:33.030 And that task is to develop a shared vision. 631 00:35:34.499 --> 00:35:36.000 First you want to look and say 632 00:35:36.000 --> 00:35:38.302 who is missing from this table? 633 00:35:39.103 --> 00:35:41.739 We've learned that in our working day we had to work 634 00:35:41.739 --> 00:35:44.475 at bringing people and think who wasn't there. 635 00:35:45.476 --> 00:35:48.479 And in the discussion we had this morning, we just thought of somebody else, 636 00:35:48.746 --> 00:35:50.581 what we need to bring that person. 637 00:35:50.581 --> 00:35:53.518 So we're still forgetting people, but that's okay because 638 00:35:53.518 --> 00:35:57.021 we're constantly thinking about it. 639 00:35:57.021 --> 00:35:59.056 You develop a shared vision 640 00:36:00.191 --> 00:36:02.994 and before you do that, share your vision 641 00:36:02.994 --> 00:36:07.431 and your vision and your vision and your vision and your philosophy. 642 00:36:07.431 --> 00:36:09.500 You’ve got to get the philosophy that 643 00:36:10.635 --> 00:36:15.773 we get to be honest about who we are and what we think. 644 00:36:15.773 --> 00:36:19.677 And then after you’ve all met each other and you've had time together, 645 00:36:20.378 --> 00:36:24.215 maybe if you develop something that's guiding towards a collaborative vision 646 00:36:25.783 --> 00:36:27.552 and defining roles. 647 00:36:27.552 --> 00:36:30.721 Not everybody is going to be the one meeting with the partner 648 00:36:30.721 --> 00:36:35.793 and not everyone is going to be the one at the legislature. 649 00:36:35.793 --> 00:36:39.397 Maybe your goal is to be that amazing therapist. 650 00:36:40.298 --> 00:36:43.768 Maybe your role is to be the deaf mentor that goes to the house. 651 00:36:44.735 --> 00:36:47.638 Maybe your role is your family based organization, 652 00:36:49.073 --> 00:36:53.010 but know the roles and be really, really good at your roles 653 00:36:53.811 --> 00:36:55.813 and sometimes facilitators can help; 654 00:36:56.314 --> 00:36:58.883 often facilitators can help. 655 00:36:58.883 --> 00:37:02.420 So these are a couple of our goals that we developed in Maine. 656 00:37:02.420 --> 00:37:06.090 To develop one family centered early intervention 657 00:37:06.257 --> 00:37:09.060 and language and communication opportunities, 658 00:37:09.227 --> 00:37:12.964 exploration practice for families who are deaf and hard of hearing children. 659 00:37:12.964 --> 00:37:14.498 And that's what I do. 660 00:37:15.600 --> 00:37:16.567 Another idea we 661 00:37:16.567 --> 00:37:18.970 had was we wanted all families 662 00:37:19.637 --> 00:37:21.973 of infants and toddlers to identify who are deaf and hard of hearing to 663 00:37:23.174 --> 00:37:25.509 have access to early intervention providers, 664 00:37:25.843 --> 00:37:28.045 that specialize in working with deaf children 665 00:37:28.746 --> 00:37:31.816 and have the opportunity to be deaf and hard of hearing adults 666 00:37:32.183 --> 00:37:34.719 and the opportunity to meet other families. 667 00:37:34.719 --> 00:37:36.854 These are pretty broad, really. 668 00:37:36.854 --> 00:37:39.457 And they're things that everybody can agree on. 669 00:37:39.457 --> 00:37:41.926 So shared vision, shared goals. 670 00:37:41.926 --> 00:37:45.096 And together, start small. 671 00:37:45.096 --> 00:37:49.533 What is the first step, what are we going to do, what can we agree on? 672 00:37:50.234 --> 00:37:53.504 And then you think about a month from now, a year from now, 673 00:37:53.504 --> 00:37:57.341 and try to make an action plan together, 674 00:37:57.341 --> 00:38:02.480 and then sometimes working on a project, create a video, create 675 00:38:02.480 --> 00:38:06.517 a family resource, make sure all the perspectives around the table 676 00:38:06.917 --> 00:38:11.088 when you're doing something together with that same shared vision, 677 00:38:12.089 --> 00:38:13.758 it kind of works. 678 00:38:14.825 --> 00:38:17.161 And boy, this is a slow practice. 679 00:38:17.762 --> 00:38:19.897 I feel like I've been doing this for 20 years. 680 00:38:20.064 --> 00:38:22.733 I think I have been doing it for 20 years. 681 00:38:22.733 --> 00:38:26.971 It was a memorandum of understanding in our state that we developed, 682 00:38:26.971 --> 00:38:33.077 with our agency, our statewide deaf education agency, and Part C. 683 00:38:33.077 --> 00:38:37.682 It took the coffee, it took the visits, it took the shared understanding. 684 00:38:38.349 --> 00:38:41.686 It took five years from the first time 685 00:38:41.686 --> 00:38:44.989 I finally got a meeting with this woman 686 00:38:44.989 --> 00:38:47.358 to the day we signed. 687 00:38:48.526 --> 00:38:50.394 It was not quick work, 688 00:38:50.394 --> 00:38:52.463 but it’s so important. 689 00:38:52.997 --> 00:38:56.400 Maybe you want all children 690 00:38:56.801 --> 00:38:58.369 that are deaf or hard of hearing 691 00:38:58.369 --> 00:39:00.871 to have a full team empowering their family 692 00:39:02.440 --> 00:39:06.410 do you have all these people available to your families in your states? 693 00:39:06.410 --> 00:39:09.780 Maybe. 694 00:39:09.780 --> 00:39:11.982 And then the consistency of message. 695 00:39:12.216 --> 00:39:15.019 I heard this a lot from the families that I interviewed. 696 00:39:16.120 --> 00:39:18.923 We get so many mixed messages. 697 00:39:18.923 --> 00:39:21.992 This caused confusion and frustration and fear. 698 00:39:23.394 --> 00:39:26.831 Everywhere we went, someone was trying to tell us 699 00:39:26.831 --> 00:39:31.068 what to do next, but what they said was different from the other person. 700 00:39:32.103 --> 00:39:35.406 We get so many resources and while they were good, 701 00:39:36.474 --> 00:39:38.809 it was overwhelming 702 00:39:38.843 --> 00:39:42.346 and the resources conflicted. 703 00:39:42.346 --> 00:39:46.117 So can we imagine a system 704 00:39:46.550 --> 00:39:50.187 where providers and the community actually come together 705 00:39:50.755 --> 00:39:53.491 to build a process that empowers 706 00:39:53.491 --> 00:39:56.527 parents with a consistent message? 707 00:39:56.527 --> 00:39:59.497 We can do that. 708 00:39:59.497 --> 00:40:04.502 And can we imagine a system where the first focus 709 00:40:04.502 --> 00:40:08.139 of early intervention is attachment and bonding, 710 00:40:08.873 --> 00:40:11.642 eye contact, touch 711 00:40:11.642 --> 00:40:15.613 and giving the parent the permission to just be a parent 712 00:40:16.647 --> 00:40:20.217 and be successful. 713 00:40:20.217 --> 00:40:22.386 And then reflection. 714 00:40:22.386 --> 00:40:25.022 Not many systems do this. 715 00:40:25.022 --> 00:40:29.193 We've tried really, really, really hard to make this happen 716 00:40:30.828 --> 00:40:33.631 and it's a good visual system. 717 00:40:33.664 --> 00:40:37.435 It causes families to reflect, to stop, 718 00:40:38.335 --> 00:40:41.906 to think, to explore more things 719 00:40:43.507 --> 00:40:45.943 and change and question 720 00:40:45.943 --> 00:40:50.281 what they're doing. 721 00:40:50.281 --> 00:40:54.385 And then we have a journey of exploration. 722 00:40:54.385 --> 00:40:58.489 We have a communication and language opportunities, 723 00:40:58.489 --> 00:41:01.525 exploration practices that we're doing throughtout the work 724 00:41:02.827 --> 00:41:06.330 and the concept that everybody feels they’ve an informed choice. 725 00:41:07.465 --> 00:41:09.233 And I would agree with that. 726 00:41:09.233 --> 00:41:11.402 The concept of informed choice 727 00:41:11.902 --> 00:41:14.071 reflects some fundamental beliefs. 728 00:41:14.538 --> 00:41:18.843 The families need comprehensive, meaningful, relevant 729 00:41:18.843 --> 00:41:22.646 and evidence based information from professionals 730 00:41:22.980 --> 00:41:26.717 in order to make decision that are most appropriate for their child. 731 00:41:27.451 --> 00:41:32.389 And I would add the critical importance of deaf and hard of hearing adults 732 00:41:32.623 --> 00:41:35.726 and parent-to-parent support in that decision-making process. 733 00:41:37.294 --> 00:41:40.331 These are the webs that were developed by Enid. 734 00:41:41.065 --> 00:41:42.099 And as you see can 735 00:41:43.234 --> 00:41:45.836 we work really hard to have consistency 736 00:41:47.338 --> 00:41:49.640 in a way that is comprehensive. 737 00:41:49.640 --> 00:41:52.409 And that's so important to take away 738 00:41:52.409 --> 00:41:56.013 the piles of paper and the mixed messages. 739 00:41:56.013 --> 00:41:59.149 If you want to do this and you do this and you want to do this, see 740 00:41:59.149 --> 00:42:02.820 if there's a way in your state that you can streamline the process. 741 00:42:04.488 --> 00:42:07.191 One way. 742 00:42:07.191 --> 00:42:09.660 And then when you're working with families, 743 00:42:10.561 --> 00:42:13.030 you bring other people with you 744 00:42:13.030 --> 00:42:15.933 coordinate this process. 745 00:42:15.933 --> 00:42:18.903 Having families meet so many different agencies 746 00:42:18.903 --> 00:42:21.906 and individuals on their own 747 00:42:21.906 --> 00:42:24.909 is cruel. 748 00:42:24.909 --> 00:42:27.912 Having a brand new mother and a new father, 749 00:42:28.712 --> 00:42:33.150 they see bombardment of information and conflicting messages. 750 00:42:33.684 --> 00:42:35.152 We don't want to do that anymore. 751 00:42:35.152 --> 00:42:38.656 Find a way in your system to coordinate it, 752 00:42:39.723 --> 00:42:43.093 your Part C system, whoever's doing the intervention 753 00:42:43.861 --> 00:42:46.330 to bring people with you 754 00:42:46.330 --> 00:42:49.700 once you have that coordinated trust with the family. 755 00:42:50.401 --> 00:42:53.337 So I'm going to bring a deaf adult with me next time 756 00:42:54.438 --> 00:42:56.607 I'm going to bring a parent, 757 00:42:56.607 --> 00:42:59.777 I'm going to bring that listening and spoken language specialist with me. 758 00:43:00.244 --> 00:43:03.113 I'm going to bring the cued language person. 759 00:43:03.113 --> 00:43:05.849 I'm going to bring the deaf mentor. It’s 760 00:43:05.849 --> 00:43:08.018 one after the other after the other. 761 00:43:08.352 --> 00:43:13.057 But it's a journey and uniting the families together. 762 00:43:13.057 --> 00:43:15.159 It works really well. 763 00:43:16.026 --> 00:43:20.197 And then imagine a system where you embed deaf 764 00:43:20.197 --> 00:43:24.301 and hard of hearing adults and families every step of the way, 765 00:43:25.035 --> 00:43:27.404 because if you don't embed that it is not going to happen. 766 00:43:28.205 --> 00:43:32.343 So somebody’s window of opportunity may be the audiologist. 767 00:43:32.910 --> 00:43:36.780 Is there a way there’s an audiologist out there that you can have an audiologist 768 00:43:36.780 --> 00:43:39.350 on speed dial for a deaf adult, 769 00:43:39.883 --> 00:43:43.087 or speed dial for a parent. 770 00:43:43.087 --> 00:43:44.421 I don't know. 771 00:43:44.521 --> 00:43:46.223 And what am I going to mention? 772 00:43:46.223 --> 00:43:47.858 Are you in this system? 773 00:43:48.959 --> 00:43:50.694 And then in Maine, 774 00:43:50.694 --> 00:43:52.763 in every part of a transition, 775 00:43:53.797 --> 00:43:57.134 we start to embed again. 776 00:43:57.134 --> 00:43:59.470 The impact of one. 777 00:43:59.470 --> 00:44:02.072 That’s you, that’s me. 778 00:44:02.072 --> 00:44:04.508 We had to try, right? 779 00:44:04.508 --> 00:44:08.345 We had to begin the conversation and be open to change. 780 00:44:09.146 --> 00:44:11.115 And they see me everywhere. 781 00:44:11.115 --> 00:44:14.485 They had the legislature, we have the audiologist, the hospital, 782 00:44:14.485 --> 00:44:19.223 the Department of Ed start asking for those meetings. 783 00:44:19.223 --> 00:44:20.958 And with this, 784 00:44:21.158 --> 00:44:23.327 it's all about connections. 785 00:44:23.327 --> 00:44:24.595 That's what my mom said. 786 00:44:24.595 --> 00:44:26.730 It's all about connection. 787 00:44:26.730 --> 00:44:30.200 Listen more and talk less 788 00:44:30.200 --> 00:44:32.903 think with them and that for them 789 00:44:34.304 --> 00:44:39.710 develop some options, not ultimatums. 790 00:44:39.710 --> 00:44:42.179 Look for the positive and who you're talking to. 791 00:44:42.913 --> 00:44:44.415 Nothing negative. 792 00:44:45.249 --> 00:44:47.351 Don't say you're wrong. 793 00:44:47.584 --> 00:44:49.720 Determine why they feel they're right 794 00:44:51.321 --> 00:44:53.157 and then always, always 795 00:44:53.157 --> 00:44:56.427 reflect and look back on what worked 796 00:44:57.661 --> 00:45:00.898 and what maybe didn't work. 797 00:45:00.898 --> 00:45:04.835 And now we have come a very, very long way 798 00:45:06.236 --> 00:45:08.072 in the 20, 25, 30 799 00:45:08.072 --> 00:45:11.575 plus years I've been doing this work. 800 00:45:11.575 --> 00:45:15.612 The biggest change that I have seen here at the EHDI conference 801 00:45:16.113 --> 00:45:21.018 is the number of deaf and hard of hearing adults and the number of families. 802 00:45:21.885 --> 00:45:25.155 The first EHDI conference I went to, 803 00:45:25.155 --> 00:45:27.324 there were 804 00:45:27.391 --> 00:45:28.792 three deaf adults. 805 00:45:28.792 --> 00:45:32.796 Me and two others, and there were a handful of families. 806 00:45:34.031 --> 00:45:36.633 At this time I would like to invite 807 00:45:37.301 --> 00:45:40.204 every family member in the room to please stand up. 808 00:45:40.904 --> 00:45:43.474 If you have a deaf or hard of hearing child, 809 00:45:43.474 --> 00:45:48.245 please stand. 810 00:45:48.245 --> 00:45:52.049 Look at this. 811 00:45:52.049 --> 00:45:54.585 You're going to have evolution. 812 00:45:54.585 --> 00:45:58.222 And stay standing. 813 00:45:58.822 --> 00:46:01.358 And now deaf and hard of hearing adults. 814 00:46:02.059 --> 00:46:04.862 If you are deaf or hard of hearing, please stand up. 815 00:46:05.062 --> 00:46:11.535 Please join these families. 816 00:46:11.535 --> 00:46:14.671 I think we had a number that professionals look at that 817 00:46:16.006 --> 00:46:17.574 this makes me so happy. 818 00:46:17.574 --> 00:46:19.910 Look at this change. 819 00:46:19.943 --> 00:46:22.546 I'm going to read you something you can stand up if you want. 820 00:46:22.546 --> 00:46:25.115 This is my favorite quote of all time. 821 00:46:26.617 --> 00:46:27.951 What we really want. 822 00:46:27.951 --> 00:46:29.319 This if from a mom. 823 00:46:29.319 --> 00:46:33.390 What we really want, what we really need as parents 824 00:46:34.291 --> 00:46:38.595 are opportunities to connect and contact with other families 825 00:46:38.762 --> 00:46:43.534 with deaf and hard of hearing children, help in making regular contact 826 00:46:44.535 --> 00:46:46.570 with adults who are deaf or hard of hearing, 827 00:46:47.337 --> 00:46:49.506 information that is accurate, 828 00:46:50.607 --> 00:46:53.777 honest, unbiased and fair. 829 00:46:55.179 --> 00:46:57.648 And then the emotional support 830 00:46:57.948 --> 00:47:00.918 to make decisions. 831 00:47:00.918 --> 00:47:05.389 And with this, I'm going to ask that you join me in believing in the power 832 00:47:05.389 --> 00:47:10.894 of connection to make a difference for deaf and hard of hearing children. 833 00:47:10.894 --> 00:47:20.304 Thank you. 834 00:47:20.304 --> 00:47:21.738 And with questions to that. 835 00:47:21.738 --> 00:47:24.474 Oh, I think we're out of time. Yeah. 836 00:47:25.309 --> 00:47:25.709 Okay. 837 00:47:25.709 --> 00:47:26.243 No time. 838 00:47:26.243 --> 00:47:29.479 Thank you very much. Yeah.