Just Be Brave! 2015 Deafblind Symposium in Austin, TX. Transcript Start [Silence] Fade up from black. Animation: Text for TSBVI transform into braille cells for TSBVI. Fade to black. Fade up from black. David Wiley: Okay, we have one more speaker for the morning and... she's also coming up here to talk about getting involved in the community. Our speaker is going to be... Rachel Allen and her mom, Catherine. And... there's many ways that she's involved with the community -- one of the ways is getting involved with the drill team at her school in Plano. And I'm sure she's going to talk about that and many other things, so I'm going to introduce Rachel Allen and Catherine Allen. [Applause] Catherine Allen: You are speaking our language. Catherine: Well, I can start talking. We are 19 years into the deafblind journey. And I really have to give a shootout to everyone from mesquite ISD, Plano ISD and all of the professionals in the room who helped me make it through dealing with you guys... [ Laughter ] I'm just kidding. I'm teasing. Kind of. You know I love you guys. So those who have watched us -- oh, let me tell you what's going to happen here, first. Rachel often attends different things with me, and she is my interpreter to whoever needs interpreting. We did a wedding this summer, and the people said, "Please let Rachel stand with you." So she wanted to. She was just going to sit, but she said, 'No, I want to interpret.' I was like, 'That's okay with us,' and she loved it. So she is my interpreter and then in a few moments I'm going to be her interpreter. So... those of you who have been watching us, walking with us, the closest to us have known that a long time ago I stopped working towards 'normal' physically for her. I stopped working on getting her trach out, I stopped working on her feeding tube coming out. Canceled... some of our home therapies. All for the purpose of pursuing something that's much more elusive in the deafblind, CHARGE syndrome, multi--handicapped world. It's something that Rachel began asking for -- truly yearning for. So, I began working -- really putting most of my effort, along with all of the medical stuff, school stuff, all the stuff that we have to do for her health, and for her learning, and growing. But I began really working towards pursuing this elusive thing. She began asking for it. She was yearning for it. And she -- she was asking me so persistently, years before we found a way to make it happen. And Dr. Vandyke calls this something -- the ultimate goal for deafblind persons, 'moments of joy.' It's something that I have come to call 'belonging.' And it's something that Rachel calls 'friends.' Whew. So we decided to enter the typical world through the means of the drill team. Not going to say that I would recommend it for everyone, because these people are insane! [ Laughter ] 'Oh, I love my friends,' she said. So, in a moment... I'm going to turn the presentation over to her and her friends. And let you see something. But I do want to tell you -- most people who looked at our Facebook pages and our posts, and they're like, 'Oh, my god! This is so awesome! You guys are so lucky!' And they're so right. It is so fantastic. It is awesome. Beyond what you can even express. It's fantastic. It's also very heart breaking. It's extremely frustrating. And it's extremely lonely, also. Dealing with great, big, giant adolescent emotions... and all of the social rules -- have you ever tried to explain social rules? You know, like, why your teacher can't come spend the night with you? [ Laughter ] I know! And all of the little intricacies of feelings. It's... it's been really hard. To say the least. Following -- keeping up with the fast pace of high schoolers. Rachel is 19. She is at Plano Senior High. She is graduating this year. [Applause] This year, this year, this year, woo-hoo! We entered into the drill team four years ago in high school. In Plano they also have Senior High. She's graduating with a group of girls she's been in drill team with for three years. And so, she is a senior right along with them. She'll be walking the stage with them. She is going to prom with them. [ Laughter ] So awesome! All of these big emotions, all of this fast-pace, she loves every second of it, except when she's so exhausted by trying to keep up with it. Trying to understand high school relationships -- love, which she gets, but in a different way. But for this little bundle of love and joy, who -- [ Laughter ] Who really, basically understands at a third grade level. This is huge. And it's been very difficult, but it's been amazing. And so... we have dedicated ourselves, and I have dedicated my life to making this happen for her. And in a moment you're going to see -- I can't tell you how we've done it, because that's a whole different presentation. Lot longer. But why? Why we don't quit, when even professionals are saying, 'Really?' 'I mean, she's sick every other week,' Or if she can't make it through, she's so stressed she has headaches. And if -- you never sleep, you either eat, shower or sleep. Which one? You've got to make choices here. We're doing the drill team and we're committed to it. And when it's over, we'll do something else. You can bet on that! So Rachel would like to say just a few things about her experience in Planoettes. So we're going to tell them. I'm a manager. I'm a manager of the Planoettes. What's your favorite thing to do? I love to help out. I love watching the girls dance. I love going to football games and parades. Mostly, I love my friends, and the directors. And she has exciting news. Ms. Davis is having a boy! She loves people having babies. [Applause] Talking about that, talking about that. And another very exciting thing, she's been waiting for two years to do what's going to happen in April. I'm performing in the drill team spring show... with the other Planoettes. [Applause] So now... they haven't choreographed all of the part of the dance she's going to be doing with the other girls, but she thought she'd give you guys just a little taste... of, you know, her free style. Her free style, she's been practicing a long time. [ Music playing] ∫ You can be amazing ∫ ∫ You can turn a phrase into a weapon or a drug ∫ ∫ You can be the outcast ∫ ∫ Or be the backlash of somebody's lack of love ∫ ∫ Say what you wanna say ∫ ∫ And let the words fall out ∫ ∫ Honestly, I wanna see you be brave... ∫ I just wanna see you I just wanna see you ∫ I just wanna see you See you be brave ∫ ∫ I just wanna see you yeah... ∫ ∫ I just wanna see you oh ooh... ∫ ∫ I just wanna see you ∫ [Cheers and Applause] You understand why I keep doing it? [ Laughter ] So the real message is, be brave. Get in the community. Get involved. You see somebody, find a way. We -- you know, she was Hannah Montana for a few years -- you guys remember, and somebody at the school, Ms. Dillon, said, 'Why don't you come dance?' Watch dance. She just got to watch. And when I said, 'Would you guys consider letting her be a manager?' They were like, 'Yeah.' Just be brave. Just do it. And I do have to say, one disclaimer, she is going to be leaving. She is very famous and busy. [ Laughter ] She told me, I don't -- I can't go to the deafblind meeting, because I have competition. I negotiated with her, and so she came today, and her intervener, Evan, is driving her back, because they have competition tomorrow. So, if you want to get her autograph, or say hi, do it during lunch. [Applause] Cryal Miller: Aren't you glad you came today? [Silence] Fade up from black. Animation: Text for TSBVI transform into braille cells for TSBVI. Fade to black.