TETN 20443 Stories of Success after Graduation This video is posted online with the following chapter markers: Chapter 1. How Do You Measure Success? - How do you measure success for an adult with multiple disabilities? Chapter 2. Chris' Profile - Profile of Chirs and supported employment. Chapter 3. Brett's Profile - Profile of Brett and self-employment. Chapter 4. Jaceson's Profile - Profile of Jaceson and volunteer activity. Chapter 5. LeeAnn's Profile - Profile of LeeAnn and her passion for marine life, specifically sharks. TETN 20443 Stories of Success after Graduation Transcript ^B00:00:00 [ Silence ] Chapter 1. How Do You Measure Success? [ Slide start: ] David Wiley: This is TETN number 20443, Success Stories After Graduation. And we're going to discuss the stories of some individuals with deafblindness or visual impairments with multiple disabilities who have... gone on to have a high quality of life. And so that's what we're going to discuss today. My name is David Wiley and I work in Outreach here at TSBVI. [ Slide end: ] This is a... personal preference of mine, if we really want to understand transition planning for our secondary aged students; is that I think a lot of times schools make the mistake of judging the quality of transition planning based on what's going on at school. But we all know that the entire purpose of transition planning is to make a move to ‑‑ after the students graduate, and they're no longer in their schools and they no longer have the support of the educational team around them, how do they fare? And I think, a lot of times, those of us who work in schools don't get a lot of information about that kind of thing and, in many cases, don't know individuals who are like our students that we're working with now who may have graduated five, ten years ago and know what it is they are up to these days. And I think if we really want to understand what works successfully; the kinds of things that people, you know, would be moving toward; the kinds of things that they would be doing that we could look at and say, why -- "I think we were successful with that graduation" and then, or successful with the, you know, the person's education that it amounted to something. And that also ‑‑ the role models that that would be for current students, to know the kinds of activities that individuals who are adults with sensory impairments are doing out in the community. I think it really helps us to put things in perspective. So That's what we're going to talk about today. And primarily we're going to do that through video case study examples, and I have four of them that I want to show today. Before going to the first one, I want to quickly go over a few points that I think are important. [ Slide start: ] And the first one is this: How is it that we judge success for the individuals who move on into community life after graduation? And... I think, a lot of times we have a tendency to judge a single factor. One of the things that... the U.S. Department of Education asks us is, "How many students have a job?" And I think that is a good measurement, but I don't think it tells the whole story about whether or not someone is living a happy and successful life. [ Slide end: ] And so the question that I put down there on the bullet points is that we would say that most people, we would think ‑‑ we would want them to have a high quality of life. And the high quality of life -- [ Slide start: ] the three terms that I've been using, recently, and in thinking about high quality of life, are purpose, satisfaction, and joy. And I think that those are three things that are general, but I think most people would degree on that if you have these things in your life, you probably had a high quality of life. And you would probably, I would think, judge it as successful. I think that we do for ourselves. [ Slide end: ] I think these are things that we look in our own lives; a sense of purpose; a sense that there's something that we need to do; there's something that we do that matters; there's a reason that we get up in the morning, because something needs to be done. That sense of purpose. And that the activities that we do are satisfying to us; that they are personally enjoyable; that they are things that bring us, that last one there, joy. The things that bring us joy in our life. And I think that's something that really anybody could say, if you are experiencing those thing, you're having a successful life. And so those are the things that I want to look at in these case study examples that I'm going to show; is whether or not people are experiencing purpose, satisfaction and joy. And then the final point I wanted to make about what equals success, [ Slide start: ] is that the success should be judged individually for each and every person. Because for all of us, who are here today, and really all of us all around the world; we all have different interests, we have different preferences, we have different abilities. And these things; our interests, our preferences and our abilities are the things that... really enable us to understand what is purpose, satisfaction and joy in our lives. So the answer is different for each and every student. The final thing that I put down there on that bullet point is connections. [ Slide end: ] And by connections I mean, sometimes the things that bring us satisfaction and joy aren't necessarily our interests and preferences, but the fact that we have certain connections with people in the world. And... the things that they do and the things that they like to do, just the fact that we want to be with that person, that we have a social relationship with them, or whatever our connection is with that person, we would like to be with them and so sometimes their interests are the things that we get involved in. And I think everybody probably has an example in their own life of something that you do, not primarily because you are so inclined to do that, but because someone that you care about is inclined to do it. You know, when I think back and I look at... my own family life for when I was a kid and I think about my mother and father. I don't think my father was inclined to go to craft fairs, but he went to craft fairs and because somebody he cared about, in this case, my mother, enjoyed that. And so they enjoyed being together. And so I think that's another thing that we have to look at besides the students' personal preferences, who are the important people in their lives and what are their interests as well. The next point that I would like to make is that... even though I just said the answer is different for everyone, I'm going to kind of go the other direction and say, can we identify some things that are... that are common to most people that we would say would lead toward a happy, joyous life. And I think that these things are relatively, commonly accepted by most people. [ Slide start: ] So the point that I put there, the first one is an active home life. And so, an active home life would include that you have things to do that you're busy, that you aren't spending long hours doing nothing and feeling boredom. So I think, being busy, having things to do around your house is an important element of having a high quality of life. I think that what you do around the house would be different, every individual person has a different thing that brings them joy, but I think having something to do is important. The second thing I put in there is access to the community. That... one of the things that I think helps us have a high quality of life is being able to go the places that we want to go. And as I said earlier, where those places are would be different for each and every individual, but the ability to get to places that you would like to go, I think, is part of what is having a high quality of life. The third thing I put in there is social connections; that I think that's true of most everybody. That they would like to have some people that they like to be around, and so there's that one. And then the availability of the support needed to pursue interests and meaningful and productive activities. Chapter 2. Chris' Profile Because we started late, I'm looking at the clock now and I'm gonna go on and move to these videos so we'll have time to complete them all. [ Slide end: ] What I'm going to do is -- I'm going to show four profiles of individuals that I think... we can agree... seem to be having a high quality of life. And so we'll show those and then we'll talk some about what they had in common. So, the first one that we're going to do, is we're going to talk about a fella named Chris. Chris has an active life and he also has a productive life, and the productive life he has comes through a customized employment. And so let's go on and observe Chris and the things that he's doing in his life. He's 33 years old, when this was shot in 2008, and so here's Chris and his Mom talking about it. [ Video start: ] Sheryl: I'm Sheryl Palasota, and I'm Chris Palasota's mother. We live here in Bryan, Texas. Chris is 33 years old. He was a New Year's baby. He was born with congenital rubella syndrome. Chris is legally blind, he is deaf. It's severe in one ear and moderate in the other ear, but he can hear some sounds and he uses his vision very well. Chris communicates a lot by fingerspelling and signing. He can also print; read printing. Chris lives at home with me. He's very active with the A-R-C, the ARC of Bryan College Station. He's in a bowling league and he does Special Olympic bowling and golf. He works part time at Central Texas Orthotics and Prosthetics; around 10 hours a week. Chris does his share. He helps... he helps cook some. We do simple recipes. And he also folds his clothes and puts them away. He dries dishes and puts them away. He feeds his pet. He makes his bed. He keeps his room pretty neat, too. And takes out the trash. He also takes out the trash. [ water pouring ] [ microwave beeping ] [ quiet ] [ Chris verbalizing ] [ quiet ] Sheryl: He likes the word search puzzles. The word search where the words are all mixed around and vertical and horizontal. He does those pretty quickly. And, oh, he has an X-L Glider, it's an exercise machine, and he gets on it and he'll get on there and do it 15 to 30 minutes. So we're trying to ‑‑ we try to exercise, you know, do a lot of walking, too. We do mall walking or we walk at the parks, or even through the grocery stores when it's cold, you know. Chris is on the deafblind waiver that became available in 1996, because when he graduated from high school, we weren't sure what would be available with his vision and hearing impairments; and that has provided one-on-one, an intervener, probably about 50… 55 hours a week... at least. They have a case manager, program manager, it's just made a difference in his life. I work with Chris as an intervener, and I'm his job coach, or we do the job supported-employment at his job because he could not do it alone; we have to assist him and prompt him sometimes. Carla Skybye does intervening with Chris at least twice a week, and she takes him, usually takes him to his bowling league on Thursday nights, and she does fingerspelling and signing to him. She's been with Chris since high school, when they hired her one‑on‑one to work with Chris in the life skill program. So she ‑‑ you know, if I have something that I'm ‑‑ need to do, also, she can do something with him out in the community, take him to the movie or go bowling or out to the mall. He likes to go to the book stores. The various book stores here in our town. He loves the library. He has his own library card and we go there about once a week and he picks out books, and he scans them, and signs "thank you" to the librarians, and he looks forward to the book stores and libraries quite a bit. He loves to go to church. He's a member of a Catholic Church here. Chris does Special Olympic bowling and golf. And Chris has many medals he's won, and he looks forward to the out of town trips, too. Chris is employed at Central Texas Orthotics and Prosthetics, where they make the artificial limbs and prostheses for people, and arm braces, leg braces. And Chris does a different variety of odd jobs that they found a need for. They have a list typed up on their wall that ‑‑ for Mr. Chris' daily duties. And like Monday is, like, clean the plaster or pulling room, sweep the floors, dust the counters, and each day there's something different and there's a checklist so he can check it off after he does it. And that helps him visually see and read what he needs to do next. And Chris works just ten hours a week. The job -- the job was sort of created for Chris. They wanted to find something that he could do that would enhance their company, and to give him some hours of work, but, you know, not too much; but he takes out the trash and cleans the counters and stocks the refrigerator with their drinks. He vacuums. He paper shreds the paper. We do the Sam's and Wal‑Mart run for the company. We saw they had a need for that, and asked if we could do that, and they were really happy that we took over and volunteered to do that. It's part of his job now. He's made a lot of friends. He's been invited to weddings and parties, and we celebrate birthdays there in the break room with everybody. Usually at least once a month we do that. And I think the people there have learned something from Chris. Male Coworker 1: He's ‑‑ he does his job, we do our job and we just get along fine. He's just one of the gang, one of the family. Everyone has their own little quirks, whether you have disabilities or not, and so he's just like any other worker that I work with. Male Coworker 2: Mexican food is Chris. We've actually -- we went to Mexican food places with him. We went to Wings and More, where it's wings and stuff. Male Coworker 3: Olive Garden. Male Coworker 2: Olive garden with him. Male Coworker 3: Christophers. Male Coworker 2: He goes to Christmas and stuff, like we had our Christmas party, just had it, and Ms. Sheryl and Chris they fight for the lottery tickets. Male Coworker 3: Yeah. Gift exchange. Male Coworker 2: Yeah, and the gift exchange. David: So he doesn't create a problem in the workplace? Male Coworker 2: No, no. He actually, I think, sometimes brightens it up for us. Male Coworker 4: We were sitting at lunch having lasagna, that Miss Palasota brought up the other day, and Chris had eaten his lunch, and everyone had gotten up, and we were all fat and happy after lunch. And Chris stood up, and stretched and Aaron was sitting right by him, he walked over to Aaron went -- and kind of ruffled up his hair. And he gets this big grin on his face like ha‑ha, gotcha. Male Coworker 5: He's part of the gang. Right now we're cooking lunch. Typically he will sit down and eat lunch with us, and let us know whether it's good or not. He fits right in. Sheryl: When Chris was in high school, the school for the blind -- Texas School for the Blind and our high school together, did the personal futures planning for Chris. We had a circle of people come to our home; like his brother, his grandparents, maybe an aunt, his teachers, the special ed administrator -- I believe she may have come, too -- and the School for the Blind, and the Commission for the Blind, they came, and we talked about Chris' future dreams or plans, if we could dream big what would we dream? And we talked about having a home, and being able to have friends and socialization and working, and I mean it seems to me -- it seems to me most of those dreams have all come true, because Chris has been a busy young man, [ laughter ] since high school. I just want him to be happy and for people to always advocate for him, you know. And so far I think it's happened. [ Laughter ] For 33 years. So it's going to have to happen another 33. Or 40 or 50. [ Video end: ] David: If we think about his home life and whether or not he has activity in it, I think clearly he does. He has a lot of chores around the house, he cooks for himself, he does his laundry, and the dishes, and he cleans and takes out the trash and those things that we saw him do. He also has access to the community, and some of that is specialized disability things, like Special Olympics, et cetera, but a lot of it are just ordinary community activities that most of us do; walking, going to parks, library, book stores, going to church, traveling, going to restaurants, those things that many of us do. In terms of his social connections, his job really provides him with the greatest opportunity to have social connections, and you saw his co‑workers talking about the fact that they go and do lots of different things together. And I... recently had an opportunity to go down there and see him, and he's had that job now for ten years. And... he goes to parties and social events, weddings, et cetera. And just out to eat with his co‑workers and things, and so it's a good... situation for him in that respect. In terms of the availability of support, he does have Medicaid waiver services through the DBMD waiver, here in Texas, and that gives him an opportunity to have 55 hours a week, his mother said, of attendant -- or intervener services to allow him to accomplish the things that he would like to do, including helping him complete his job responsibilities at work. And he does have meaningful productive activities; going to his job and ‑‑ and taking care of those things and being a part of that work environment, I think. So, you know, I'm viewing Chris as having a, you know, a high quality of life. Chapter 3. Brett's Profile If not I'm going to move on. Like I said, we're a little short of time, I'm going to go on and talk about a young fella named Brett. Brett is approaching 30 years old. He has, as a... you know, in terms of productivity, as opposed to Chris who has a customized employment job in which he goes to work at a business and he has his schedule and job duties customized to his abilities and his, you know, his stamina; Brett is independently employed. He's self employed, and he has a contract to work at the courthouse. So let's go on and play that, and get another idea of another young fella who has graduated and moved on to adulthood and the kinds of things he does in his life. [ Video start: ] Narrator: Self‑employment, Brett's Place at the Courthouse. Guy: Well I'm Guy, I'm Brett's stepdad, and I was just saying he's got everything lined up the way he likes it. He really enjoys his job. Jo Ann: And I'm mom, Jo Ann. We actually heard about it on the radio; the fellow that had retired. The county judge made an announcement that he was looking for someone visually impaired or hearing impaired to try to take over the position because he felt like it was a tradition that they had and they felt they wanted to continue it. And they really didn't want [indiscernible], they wanted someone here that would be useful and helpful and communicate, and when we heard about it, well, we talked to the judge one day, and he said, well, I'm going to put him on a list and we're going to have him come to the board meeting and discuss it. So that's what we did. We brought Brett and he sat down and they talked about how, between themselves and the meeting, about how they would like to have another person that has some kind of disability working here and Brett told them that he thought that he would like it. And ‑‑ put him on a contract. So he's got hours he has to be here from 8:00 to 4:00 Monday through Thursday and then he has a little shorter day on Friday. Guy: We didn't know how long -- if it would burn out on him, but he seems like he just likes it more every day. So, he's been here over a year now. So he's got everything down pat pretty well. Keeps him busy for sure. Jo Ann: And Brett really enjoys routines and doing things that he really is successful at, and he's able to follow routines here and, pretty much, has really progressed daily. He looks forward to coming, and enjoys the people and he's made a lot of friends here. David: Oh, what is this place? Brett: This is my office. We usually ‑‑ we get everything set up, put everything on the counter; hot chocolate. And... on the top over there, the tip cups. And hot water on that thing, and pretty much it. And peppermints. David: Yep. Brett: The peppermint -- peppermints. David: Yep. Do you know a lot of the customers? Do you have a lot of regular customers? Brett: Every single day. Everyday. David: Yep Brett: Everyday. David: Some people come everyday? Brett: Uh‑huh, everyday. They come everyday. Customer 1: Hey, Brett, I need a water Brett: Okay. Customer 1: and a large cup of coffee. Brett: Okay. Here we go. Customer 2: Morning. Brett: Morning! Customer 3: Do you want me to send some money with Harry in a minute, I only have twenties? Brett: Yeah, that's fine. [indiscernible] Whatever you want to do. [indiscernible] Customer 4: Muffin and paper. Brett: That'll be two dollars fifty cents. Customer 4: I'm giving you three. Brett: Thank you. That'll be all for you? Customer 4: Yes. Brett: Have a good weekend. Customer 4: Can I have my fifty cents? Brett: Here we go. Have a good weekend. Customer 4: You, too. Jo Ann: Having a job coach to reinforce things in that routine and improve on each little task so that he got better at it. And it really took about six months to get him to where he is now and he still makes improvements daily. There are things that he has difficulties with. And we still require a job coach part of the day. Right now we're using the CLASS resources, CLASS program. They have the availability of a job coach and... we started out with DARS, they did some job coaching at the beginning. Right now he's getting four hours a day, so, right at 20 hours a week. He works Monday through Friday. Amanda: I'm Amanda Dillon. I'm working with Brett Simpson. I'm considered his job coach. I come in and out several times a day; check in on his needs to make sure that he is assisted properly with... his inventory and cash exchange and with people that -- his customers. I come five days a week. I help him open and I help him close. Make sure things cleaned up; that there's nothing in his path during his lunch break for danger or anything spilled. He is very outgoing; he is very friendly. And so, somebody ‑‑ if I'm here, I have to sometimes tell him, you know, they're buying a bag of chips because he doesn't recognize when they just put it on the counter. David: And that's why he has this sign out. Amanda: And people do not see that all the time, for some apparent reason. And if he is doing something else, there is the buzzer for them to buzz to let him know that they are here. And they don't always do that. But ‑‑ Brett: Make money, put the money in the box, make coffee in the morning, clean the coolers, clean the counters. All that stuff. Before 6:30 we have to clean it. [Brett working] David: So, Brett, explain to me what you are doing right now. Brett: I'm checking my counters. My counter, to see how many muffins that I have. And that way I know that when you are out of anything, I have to bring some more. Jo Ann: He usually goes to the counter and searches, and finds out what he's low on, and he's got the symbol inventory book that he'll go through and pick out the symbols of the items that he's running low on, and he's got a grocery book and he pulls the symbols out of the inventory book, and puts them in his grocery book. And then he brings that with him to the grocery store when he goes shopping. [indiscernible] >>Brett: We have one [indiscernible] Amanda: Alright. What else? Brett: We got chips. Amanda: We got plenty of those, huh? Brett: We got plenty of those. Amanda: Okay. Brett: Okay. Zinger, zinger, zinger. Amanda: That's not a Zinger. That's a [indiscernible] Brett: [indiscernible] Got one, two, three, four, five. We have five. Amanda: Five in your case. So do you want to put the water on your list, too? Brett: Yeah. Amanda: Okay, got it? You need Zingers. Alright. Brett: What else? Amanda: That's it. That's all on your list. Brett: Woo-hoo! I'm going to take this shopping. David: You going to take it shopping so you know what to buy? [ customer buzzer sounds ] Customer: I got two things of crackers, and here's my dollar. Amanda: I'm going to give you the piece that came off so we can stick that in your bag and we can fix it. You got that in there? You ready? It's got both pieces to it. Brett: Uh‑huh. David: I see a book that says Brett's Daily Calendar. What's in there? Brett: Open. Water open. Coffee. Amanda: Make the coffee. Brett: Make coffee. David: So these ‑‑ Brett: These are my -- [indiscernible]. All that stuff. Amanda: Is it your schedule? Brett: Yes, it's my schedule. Jo Ann: Truthfully, it's not for the money. They even said, you know, in the beginning, you know, it's not much, but the man that was here before retired, and it seemed like it was something that Brett would be happy doing. He likes to be around people. He likes to talk to people even though he has limitations on what he can discuss, people still enjoy him. And giving him something to look forward to. And feeling like he's involved with other people. I think that's the biggest benefit. David: Why do you like working here? Brett: So I can make money. So I make money for people to buy stuff. David: Besides the money, why do you like coming here? Brett: So I can make money for people. 13, 14, 15, 16, Jo Ann: So how many fives do you... Brett: 17, 18, 19 and 20. Computer voice: Calculator. Three, four, five, four, three, two [ indiscernible ] two, one, two, one, zero; twenty point zero. Zero plus 5 point zero, zero, plus 3 point zero -- enter... Total is twenty-eight point zero, zero. Jo Ann: The sales tax is included in the price. So, we figure out what the actual sales tax is from what -- the money that he brings home, and then I have to keep up with the receipts once he buys his supplies, and I put that in the notebook. And he's just aware -- he doesn't have the capability -- adding or subtracting those numbers to be correct all the time, so I have to go and make sure that we got the right amounts and put it on a tax form every quarter. David: So you act as his accountant? Jo Ann: True -- bookkeeper/accountant. I have enough background where I can fill out the form; they're really simple, and we send that in quarterly. David: Does he pay you as his accountant? [ Laughter ] Jo Ann: No, he gets away with a real freebie there! [ Laughter ] Brett: Usually -- usually turkey sandwich. I usually bring my lunch. Usually I go to my office and eat at my desk. David: You make your own lunch? Do you make it in the morning or do you make it the night before? Brett: I usually make it at night. Jo Ann: When we first came to work here, helping Brett, one of the lawyers, locally here, has just a real playful type attitude with everybody in the courthouse; and he started talking to Brett and he said, he would be playing music at a local coffee shop. So if I can't go, I have to find somebody to take him, because he is determined that he wants to be there. [people talking and clapping] Brett: Let's get started, Wooo! Guitarist: Bring Brett up here. [ indiscernible singing ] [ audience clapping ] [ indiscernible ] Jo Ann: Play music? Brett: Play music. David: Yeah, last night that's what we did. What other things do you do for fun? Brett: Usually play ball and come to work every day. David: So work is one of the things that you think is fun, huh? Brett: Right. David: Okay. And so what do you do for fun at home? Brett: Play music. And come to work every day. [ latch and lock clicking ] [ door slams ] [ door slams ] [ Video end: ] David: So there's Brett's story. I was recently down to see him, and I also see him and his family at the annual meeting of the Deafblind Multi‑andicapped Association of Texas. And so I know that he's still working at that particular location. He's still got his contract, and he's been doing it now for three or four years and it's going very successfully. So, much like Chris, he has... you know, several challenges facing him. For Chris, he's deaf, he's visually impaired, he has an intellectual disability. For Brett, he's blind, hard of hearing, intellectual disability, and yet they both have very active and full lives. And I think one of the things that's true about Brett, is that we look at his home life -- his main enjoyment at home is listening to music, but one of the things that's true is he spends a lot of time at home prepping for his business concerns; doing his -- counting up receipts for the day, going shopping to get the materials that he needs -- that he's running low on at the store and the kinds of ‑‑ you know, making a sack lunch for work the next day. And all those kinds of things that sort of tie into the fact that he's got a productive activity. But he does have an opportunity to go into the community as well, and one of the things -- stories that his mother told there, was there was an attorney at the courthouse who sings open mic night at the coffee shop, and he always invites Brett to come along, and they work up a song together and sing it; and it's a great activity for Brett that he really looks forward to. He gets out and around town, and then also he also has the support of... the CLASS program, Communities Living Assistance and Support Services, another Medicare waiver, who provides assistance through job -- job assistance, job coach at work and also provides transportation for him and helps him get out into the community. All of that sort of centering around his work there at the courthouse. Chapter 4. Jaceson's Profile If not I'm going to go to number three. We're going to look... at Jaceson, and the things that's going on with him. Jaceson is deafblind and has an intellectual disability as well. And his productive activity, as opposed to employment, is community involvement and doing some volunteer work around the community, and so, he also has a very busy life and social connections. So let's watch and see what's going on with Jaceson. [ Video start: ] Susie: I'm Susie Welch, and this is our son Jaceson. Paul: And I'm Paul Welch, and this is Jaceson, this is a very special boy. Susie: Jaceson is just a real happy -- he's affectionate, fun type person, and Jaceson is a people person. He loves to be around people. He loves to be busy. He likes music and dancing and he loves the water, he loves to go swim. And he just likes to be around people. He likes activity. Usually after he has breakfast, his intervener comes and they do ‑‑ they usually -- he usually gets on a treadmill, and that kind of gets him going in the morning. He walks like for about 30 minutes on the treadmill and then -- usually, some days of the week they go to the VA in the morning, first thing in the morning, and he works in the file room and pushes a cart with medical records. He volunteers up there. You need something meaningful to do, and it's a job for him. He helps with the bingo. His grandpa calls bingo. Paul: And they go into the store -- it's a form of communication for him, too, because it gives Jaceson a smile on his face, that people come up and talk to him, and you could tell it made a difference in the other people's lives, too, because they got to know Jaceson. Susie: He participates in special Olympics and when the MHMR center in town has ‑‑ like doing parties and things, he goes to the dance ‑‑ Paul: Halloween parties and ‑‑ Susie: And he goes to the dances and to the different activities. He likes to ‑‑ he likes to go walking in the park and go feed the ducks. He likes to dance. He loves listening to music. Well, Jason has a responsibility. He changes his bed once a week, and he does his own ‑‑ he hasn't been doing his own laundry, but -- since we've moved, but he's going to be working on doing his own laundry and ‑‑ and... he helps run the vacuum in the house with the intervener and they dust. He is ‑‑ he's got a garden out there, and -- he and the intervener -- he takes care watering the garden and when we start getting vegetables and herbs and things, he's going start picking them, too. Paul: Jaceson is doing what he likes to do; Being around other people. He can build a program. Susie: You know, and, just because, you know, like they'll say ‑‑ somebody will say to you, just like the doctor told us Jaceson wasn't going to live past 13 months old, and just because they say that doesn't mean that's so. They don't know everything. And it's just like with your kid, you know, like we have people tell us, oh, well he can't do anything. You know? And that's why I felt like, you know, you have to have hope, and you have to push and you have to be the advocate; You have to be the voice for your child. He always looked forward to getting up and going to school. And all of a sudden, we didn't have to -- You know, he'd get up in the morning, and he'd be all ready to get on the bus, and, you know, he loved riding the bus to school and everything and getting out with the kids and all of a sudden, you know ‑‑ Paul: The day was going to come; no bus. Susie: No bus, no school, no place that you really have to go. And, you know, I wanted him to have a routine and have a chance to get out in the community and do things. And we just had to dream up different things for him to do, and even now we're still thinking of other activities and other places he can go. Paul: You got to think of a way to just think outside of the box. What's it going to take for him to have a normal life? And to have something that's meaningful and you just gotta keep on [indiscernible]. I'm Paul Welch, I'm Jaceson's dad. Susie: I'm Susie Welch, and I'm Jaceson's mother, and this is Jaceson next to me. Paul: Jaceson is now 33 years old. Jaceson is happy when he's doing things, and he likes to be busy. Susie: He likes to get out in the community and socialize and meet people. He likes to be on the go. He doesn't like just to sit still. He wants to be in the thick of things. Paul: He loves riding in the car, he loves riding in the motor home or flying in the airplane. Susie: Jaceson is on the deafblind Medicaid waiver, and he's been on it since just before he got out of high school. I think he got on it about 20 -- 20 years old or 21 years old and Desiree is his intervener. Desiree: I'm Jaceson's intervener, I work with him daily. I usually work nine hours a day with him taking him out in the community and doing his routine. I've been with Jaceson since 2001. When we would go into town and eat out he would -- I would have to feed him. Now when we go, if I try to feed him, he will not eat. He wants to do it on his own. Jaceson is a hugger. Jaceson loves to hug people, so you know that he's happy when people are around him and coming up to him and saying hey, give me a hug Jaceson, and he does it and he laughs. So just having people to interact with daily and I think that makes him feel important. Jaceson goes out every day. We go to Wal‑Mart, we go to the VA. Just depending on the day we'll go to the park, we'll go to the museum. So it's daily this he's out. Some days he will go up to escort, which is we wait for someone to call for a patient to go down to an appointment; We'll go and get them and take the patient down. Susie: I think being out in the community and around people really enhances Jaceson's life. And his friend LeeAnn, when she comes over, it's like -- he lights up, because he's got somebody that talks to him, that interacts with him, and it means a lot to him. It puts a lot of joy in his life. Paul: Jaceson actually went to high school with LeeAnn. She goes to the training center here in Big Spring. That's where they run into each other once in a while. Susie: Every time we go to one of the little dances that they have with the center, she was always there and she always sought Jaceson out. She would come find Jaceson and say, "Will Jaceson dance with me?" Paul: I gave her our telephone number, and she's been calling and once in a while she comes over. LeeAnn: Ready, do it again! [ Laughter ] Paul: By the little smile on his face, and the little laughter that he has, you can tell that he's having a good time. Susie: One thing that's really difficult for our kids is to have a friend after they get out of school, because after they're out of school they are not around a lot of the people that they were in school with, and our kids can't go to the phone and just call somebody up and ask them to come over. And it makes you feel real good to see that he has friends and he has people that seek him out and that want to be with him and enjoy his company. The first time she came over we tried to think of an activity for them to do that they weren't just sitting in front of the TV listening to TV because Jaceson doesn't get a lot of interaction from that, except maybe sitting with her and us and making a big bowl of popcorn and getting to share the popcorn with her. But -- so we started at Christmas time, we had a bunch of cookies to make for my mother, and she came over and she helped Jaceson. She and Jaceson would measure out the flour, put the flour in the cup and pour it in the bowl and he just really enjoyed it. He just lights up. He just loves it. LeeAnn: What do you wanna do; You want to go cook? Susie: The beginning of the routine, she went to the hook with the aprons on it, and helped Jason put the apron on and she put her apron on and they went in the kitchen and started and was it was just a regular routine. And when they finish, when they're all done, they go back and they take -- Jaceson will take, pull his own apron off, she pulls her's off, they hang it up on the hook. So it's -- you know, she's even started a routine with him and it was just something that came up, it wasn't something that we planned out each step. And I think it's very spontaneous and it makes a big difference. He just -- there's so much joy in him and her when they do anything together. They have fun. [ Laughter ] LeeAnn: Messing up, Messing up, messing up, help me! Don't fall down, Jaceson watch, don't fall down. Susie: And the other night we made dinner. She and Jaceson helped make dinner, and it makes LeeAnn feel good and Jason enjoys it and they have interaction. It seems like he responds better to somebody, a friend, than he does to us sometimes. I think even after age 22, the kids keep on learning and, you know, Jaceson he does more now than he did at 22 when he got out of high school. Every little step is a step towards being a little bit more independent and being able to do things for themselves, and it gives them a feeling of self worth and confidence when they can do something for themselves. Paul: We don't think he really stops growing. He’s still learning. I mean, it's kind of like there’s more that he wants to do. Susie: Whereas before he wouldn't seek things out in his environment, just even at the table he would never go any further than his plate. Now he'll find stuff on the table further away and try it himself. When he gets bored he lets you know that, you know, he'll get up and try to find something. Paul: Friends from years back that have been in Jaceson's life, and, they all -- they know him and when there's opportunities like fishing or golfing or where ever, we go RVing, camping. Susie: Two years ago, we took the motor home, went up in Colorado, and Jaceson got to ride the train up to Silverton, Colorado, oh, he just loved it! Paul: Last year... we did a little vacation, and on the way back we stopped in Mason, Texas where our friends were camping, and they got a golf course out there, and you just go get the golf cart and you ride around and Jaceson and I, we just had fun. I took pictures of Jaceson, he's sitting behind the driver's seat holding the wheel and away we go. Our job is to have him have a nice life. We got the dream years ago he worked with us to develop a dream. Where would -- Jaceson started like at eight years old, where is he going to live when he's like 30, who's going to be his friends, what's he going to do with his life and develop that dream so -- doing the stuff at school to get in place what we needed to get him prepared for where he'll be at 30 years old. And now he's 33. And when you look back at the dream that we developed, I mean, we're pretty much there. We got him a nice life, he's got things to do, and Jaceson's happy. And he's actually working in the community, and he's got a reason to get up and go and have a normal life. [ Video end: ] David: And Jaceson also has a busy life, and the one thing that his dad talked about, there at the end, was the fact that really what made this possible for him, besides the... the support he gets, like the others that we've always looked at through the Medicaid waiver program, is the fact that they had done some work in thinking about the kinds of things that would make him have a happy life, or help him have a happy life, and instituting those things and initiating those things. And that's one of the things that I think is most helpful with transition planning is if families and students can... be able to be forward looking and be able to describe what they would like to have happen in their lives, and then to get the support that they need in order to do that. Chapter 5. LeeAnn's Profile We got a late start, so I want to start a fourth one of these. We'll have to stop it at some point, but I do want to show a few minutes of LeeAnn and the things that are going on -- were going on -- what's going on in her life when we shot that, and so... we'll quickly move to that and then we'll have a couple minutes at the end to talk. [ Video start: ] [ silence ] Jackie's Dad: Can you introduce yourself, say who you are, your name, for the videotape? [Jackie signs her name] Jackie's Dad: LeeAnn Bryant. Jackie: I'm Jackie Bryant, LeeAnn's mother, and when the doctor in Houston told me that LeeAnn wasn't going to be able to learn anything, I guess it built a fire under me because I decided she was going to learn something. And that has been my job in life, is trying to teach her. I want to expose her to everything possible. And she dearly loves sharks. She wants a shark at Sea World, [ laughter ] and we live, eat and breathe sharks. David: And being in Amarillo, that's an unusual ‑‑ Jackie: It's very ‑‑ we are very high and dry and no way to raise sharks in Amarillo. [ Laughter ] Jackie: You just mention work and she's ready to go. [ sheets rustling ] [ patting sounds ] [ clapping ] [ LeeAnn verbaizing ] Jackie: She puts up her dishes, and she'll -- sometimes, if it's a simple meal, she gets out her own meal, and then she rinses her plate and puts it in there. [ items on the counter ] [ dishes clanging ] [ paper tearing... cereal pouring ] [ buttons beeping... microwave running ] [ indiscernible voices in background ] [ water running ] Jackie: She's registered with Daybreak in Lubbock; they arranged it for her to go to Amarillo College. David: And what about Helen? Jackie: Helen? They pay Helen. She's an employee of theirs. David: And what exactly does she do? Jackie: She's LeeAnn's interpreter, and she's been with LeeAnn over 20 years; all through school and after she graduated and any meetings we go to. We've gone to the Self-Help for Hard of Hearing, and Helen goes to those meetings with us. And she and Helen and Breezy go out for ice cream occasionally. LeeAnn loves to go out to eat, and she'll go every day, if you let her. That's a ritual. I just go to the [indiscernible] store. Male: Saturday afternoon we go to the grocery store, and she is always ready to go to that. Jackie: LeeAnn's sister gave her a gift certificate last Christmas, and I took her over there and that was it; she fell in love with it! So now we have to -- Male: She was doing her nails herself, and now she -- they put these little designs and things -- Jackie: -- And I imagine when we go tomorrow she's going to get a Halloween design on them. [ indiscernible voices in background ] Helen: Where are we going? Swimming. Swimming. Exercise. Jackie: I think Helen was the one that instigated that. She found out about the exercise program, and she thought LeeAnn would like to go. And they went and she just loves it! So this is their third year. Male: In fact I -- I took some several years ago. The same thing that LeeAnn -- the water aerobics over here -- Jackie: After she graduated from high school, she wanted to go college, and six years -- I guess she's starting her seventh year at Amarillo College. She's been in the drafting class, and she's been in the fish fly tying class, and she was in an art class, and now, mostly, she's in English and Math. Woman: She has done more than just reading; she has worked on her math skills. She's worked on her spelling skills. She's worked on -- well, just her keyboarding, in itself, the skills that she's had to master, and... she is... a learner, just like everyone else. And she has a confidence that she can learn, and she has her own game plan in her course of study, albeit it may differ from other students, but she has her goals. She has her educational goals that she wants to accomplish. I think she can do whatever her mind is made up to do. Maybe not in my time frame, but in her own time frame she can get it done. Jackie: She wants to go to Texas A&M and study to be a marine biologist -- Male: -- and take a little veterinary training. Jackie: Yeah, so she can treat the shark when it gets sick. Male: The shark center; that's her main thing, I guess, that keeps her going. David: When did she start being interested in sharks? Jackie: I don't know. It was some time after she came -- about the time she came back from Austin, when she was 13. Some of her teachers and her aides took her to see Jaws, and when she came back to Amarillo, she was just full of sharks. And it -- she lives, eats and breathes them. David: Tell me about those plans I see in her room, like, how does she create them and that model that I saw -- Male: She built it all herself! She wanted a big pond in the basement. Now she's got two levels in the basement, and I think, three levels above ground, but that's all her creation. Every Sunday she goes and -- every weekend we go and she gets two poster boards, and then she comes home on Sunday, and draws a perspective view of the room that's she's got in mind, like in the basement. But she comes home and draws that perspective, and I guess she picked up that perspective in that drafting class she had last Summer. [ water rustling ] Scuba Teacher: I'm gonna put a weight on her. Just so she gets under. [ splashing ] Scuba Teacher: OK? [ bubbles ] Scuba Teacher: Okay? She's got it now? [laughter] She's got it figured out! [ bubbles ] Scuba Teacher: Yeah. I think we've even stopped the flow of water in the mask! Male at Poolside: And so she's breathing -- the lips are tight -- better? Scuba Teacher: Yeah! Male at Poolside: Good. Good, good, good. Scuba Teacher: When she moves those lips, it breaks that seal, too. Male at Poolside: How's she doing with her -- is she breathing slower? Male at Poolside: She's touching the grate at the bottom. Scuba Teacher: She had to touch the bottom. Male at Poolside: I saw that, and we got it on film. Down. Grate. Yeah, she's talking about the grate, Yes! Jackie: I hope when the time comes, that she'll have a good place to live and can work somewhere where she's happy. I think it's because she's so determined. She never gives up. "No" is not in her vocabulary, and she's got the will to try to do it. [ Video end: ] David: Now she's certainly a case of someone who has interests and follows them with a passion. Her interest happens to be marine life; specifically sharks. She has a hobby regarding that, and she's developed a place and some plans for the future, which are probably not plans that will be actualized, short of her inheriting a huge fortune, or something, but it's still something that's very important to her, and I think she understands. As a matter of fact, there's a picture that she has had her refrigerator which shows her shark center, it says on there 20 million dollars. And so, she's aware of the fact she doesn't have the money to build it, but she spends a lot of time with it. Those are just four examples of people who I think have a full and interesting life. And they're all individuals who have intellectual disabilities, sensory disabilities, and... you know, visual impairments, and yet they still have an opportunity to do a lot of things. And I think those kinds of role models can help other people be able to plan successful lives as well. We'd like to thank you for joining us and... hope you have a wonderful rest of the day. [ Silence ]