What We Teach, What We Learn: Jennifer Grodewald's Story

At age twenty-five, Jennifer Grodewald holds three jobs, often working seven days a week and up to ten hours a day. Jennifer makes it clear that working a packed schedule is a matter of choice and one she feels good about. She says, "Even in high school I was always the kid that said, 'Oh, fifteen clubs? Not a problem.' One year I don't think I came home on the bus once, I was always there for something." She has a bright, warm personality and a great sense of humor that shines through especially when she talks about Kristen, the twenty-eight-year-old woman she works with on weekends. Jennifer has facilitated Kristen's independence in many ways, but the most important of which is that she treats her as a person and a friend, not as a client with a disability. It seems natural that Jennifer will assume that Kristen fully understands what's happening and is fully capable, until and unless she communicates otherwise.

The Best Part of the Job

Right now I have two weekday jobs and then my weekend job. During weekday afternoons I work with kids as a Behavior Specialist, or a "BS1" they call us. Mostly I'm with kids who have serious behavior problems. I go and take them out of their houses and try to correct the behaviors. I'm teaching them simple things like "please" and "thank you," and how to get along with others and their parents. I also work half the year as a teacher, doing theater. Somebody else and I travel around the state teaching Shakespearean drama to high school and middle school English classes. Sometimes we're there a whole week, but mainly we go in for three 80 minute sessions and we teach them about a play they're going to look at in class. Then they have costumes they put on and act out a little scene for their class. It's fun.

On the weekends I work a 56-hour shift with Kristen. She lives in her own apartment but she has someone there with her all the time. Supported Living Facilitator is the official title the agency we work for gave us. I come in Friday nights at 11 o'clock, and I leave Monday morning at 7 am. Kristen has a unique dynamic of people. She has one lady who's older than her, about as old as her mother. Then she has me part of the week and I'm younger; I'm 25 and she's 28 so she looks at me sometimes when I say, "Oh, my girl here," like, "Nice try. I'm older than you, young lady." She has a whole array of people that she works with and it's great, because after 56 hours she looks up at me and says, "Alright, I'm done with you. Next lady, please."

I assist Kristen with pretty much every aspect of her life, though I always I let her do what she can. For example, she can't cook for herself, but she can be there with me if I need her to stir something. I have to hold it with her and help her do it. I can't just say, "Okay. We're making brownies. Here, Kristen, here's the bowl - stir it up for me and I'll put it in the oven."

There are ways that Kristen communicates, even though she doesn't say words. I know exactly what she wants a lot of the time because of her tone of voice. It's not so much her sounds, because she makes a lot of the same sounds sometimes when she's upset or not upset. It's her tone. I can tell if it's the tone that means "I want something to eat now" or "This is getting boring, let's go out for a walk." Often times she'll just walk over to the door and look at me. You know, "Take the hint Jennifer. I'm pointing to the door. Let's go for a walk."

Kris isn't difficult to work with, though it can be tiring sometimes because I'm responsible for myself and someone else the whole time. People laugh and think, "Oh yeah, you have must have tough weekends," because Kristen and I will do things like going to the beach. But even then there's a lot more to it than just hanging out on the sand. When we have lunch it's not like I just put things on the picnic table and say, "Whenever you're hungry Kris, get what you want." If a wave comes in I have to get up and move everything for both of us, not just my stuff. I'm constantly watching and prompting her. A lot of times in the summer on nice days I'll take her to a picnic area down the road that she loves. It's near the river, and it's fenced in and I don't have to worry about her tripping on the rocks and falling in the river. Some places go right down to the water so I have to be right next to her the entire time. Sure, I might think it's annoying having to follow her around, but then I think about her. It's got to be really annoying for her having somebody right there on her arm all the time. Sometimes she wants her space.

I can't ever really take a break. It's not like I can go outside for a walk because I'm going crazy. The most I can do is to go in the other room for a little bit. Even then Kristen wants to make sure I'm okay. She'll come in a few times to make sure I didn't sneak out the window. If you're doing retail in a store you can take half hour breaks and go somewhere else where there are no customers. With Kris, I don't get to be completely off even when I'm asleep. If Kristen needs me in the middle of the night, I get up in the middle of the night. That's just how it is. But we're not considered on-call. If you were a doctor and you were on-call, you'd actually get paid for the hours that you're asleep because they could wake you up at any time. But again, we're not officially on-call, so we don't get paid for all of it.

If you read the law it says when you do this work you need five hours of sleep per night of your shift. If you get five hours of sleep then you don't have to be paid for that sleep time because you're not doing anything. Unfortunately the law doesn't say "consecutive hours," it just says "five hours of sleep per night." So that means you could be asleep for an hour, up for an hour, asleep for an hour. My argument was, "Not for anything, but if you're up and down all night -- and we often are with Kris -- do you really feel rested at the end of the night?" It's tough.

I've been asked a couple of times whether I'm going to quit one of my jobs, or limit how much I work. But I like my jobs. I hardly ever come home and say, "I can't believe I had to work all day." When you enjoy your job, it doesn't feel as much like work. People keep trying to tell me to pick one or two, but I've gotten very attached to the people I work with. Kristen is the reason I'm still there on weekends. So many times I've said to myself, "I could leave here now and get a better paying job or work for a better agency, but then there wouldn't be Kristen." Kristen is the best part of my job and what it comes down to is that if I wouldn't be working with her, I don't want to do it. People say to me, "Oh, it's really nice that you work with people with disabilities because it's nice that they have somebody who treats them so well. You should feel proud of yourself." They're missing the point. I don't feel proud of myself for working with Kristen. I learn so much from her, I feel lucky that I know her. My aunt's a nurse, my uncle was a cop, my brother's a paramedic; I guess you could say we're a service-oriented family. But we don't go around talking about how we're so proud of ourselves for what we do, we just do it.

My generation gets a lot of flack because people think we're lazy, or we don't understand what's going on. I want to say to them, "You feel bad when we say, 'Oh, you're the older generation and you don't understand us kids. Things were different when you were younger.'" You don't like being labeled, so why do you label us? I show up, I never miss a shift; you can count the number of times I've called out on one hand. Yet you constantly say "These young people... "

In this line of work you make lasting relationships, and some people aren't ready for those relationships; it has nothing to do with age. The people you help are very dependent upon you. You can't just decide that it's a beautiful day and you don't want to go in. I can't call and tell Kristen I'm not coming because I feel like going to the beach today. She'd say, "Well, you can't do that because I need somebody to come make me breakfast. If you don't come, I don't get to eat."

Patience

With Kristen I learn a lot about patience. I've been told in the past that I'm a patient person but I never felt it. People would say, "Oh, you must be patient to have thirty kids in a classroom at the same time. You don't get upset, you don't yell at them." I know how to hold my tongue but that doesn't mean I'm patient. I don't feel patient even though I am smiling and look calm.

I think with Kristen I truly understand what patience is. It might be easy for you or me to say, "Can you pass the juice?" Because she can't actually get that out, she has to have a lot of patience to get her point across and have people address her needs. Sometimes I'll say, "Oh Kristen, I'm not feeling all that patient with you today." She just kind of smiles like, "I don't care, because I can still be patient with you. I'll let you mess up as many times as you want; just remember, in the end you're going to have to get it right." It's hard to find someone nowadays who is accepting of everyone, but I don't think there is anyone to whom Kristen would say, "No, you can't come into my house because I don't like you." I think a lot of times we judge people by the way they look and the way they act. With Kristen that's all gone. She doesn't care.

People are intimidated by Kris. Who won't be intimidated by Kris? She is kind, beautiful, loving, caring and amazing; but most of all, she is confident about herself. I don't think that you could truly understand this unless you have met Kris. People see how much Kris needs to have done for her and can't imagine that how she could be so confident. I think I am somewhat shyer that Kris and I admire how she can go up to a complete stranger and engage them in a conversation. And these strangers, even if they don't realize it right away, have had a better day because of her. Sometimes people are not really sure what to make of her. As long as she stands there and smiles they think she's just great. But then when she communicates I think they're a little intimidated by the fact that if she's talking to them they don't know what to do. In line at the grocery store I'll be talking to the cashier and all of a sudden Kristen's arm is around my neck and she's pulling me in for a hug. "People don't see what she is trying to do and I have to explain, "She is just giving hugs."

Some people standing in line make me feel like they don't want to say anything, and they don't want to be rude but they feel like you're inconveniencing them for being in front of them in the line. If we're buying cereal for the house, I'll have Kristen lift it up onto the belt. They think, "Why don't you do it for her? Get it over with so we can go." Well, it's not my cereal and not my responsibility. It's Kristen's, and she is capable of doing it so they can wait an extra thirty seconds. I usually just ignore it, it's not like I can always turn into a televangelist and start spouting off, but I will answer people if they ask questions.

Kristen's not really intimidating to little kids because she smiles a lot and she's small. A lot of times kids will just come up to Kris and ask questions. "So, why can't she talk? What does it mean when she makes noise?" Sometimes kids will be talking to us and the parents say, "Get back over here. Don't bother them." They're not bothering us. I think the adults get to a point where growing up they were taught not to bother people who are different, or that it's not polite to stare. Kids aren't being impolite, they simply have questions and if they don't get their questions answered they won't understand.

Amanda, the eight year old I am BS1 for during the week, was with me one day when we ran into Kristen at the museum. She was curious about Kristen -- curious in a good way. She started asking questions like, "Well, if she can't talk to you, how do you know if she doesn't like something? Can she do this? Can she feed herself?" Since then we've all gotten together for lunch once or twice. A lot of people hear the word non-verbal and think that because Kristen can't talk, she can't communicate. Well, Amanda has no idea what non-verbal means. So I said, "What did you think of Kris?" She said, "Well, she was very talkative today. She had a lot to say. And you know, Grace kept trying to give her a pickle, and she didn't want it. She was telling her she didn't want it -- She probably had a cut in her mouth or something and it would sting." Because Amanda doesn't know the stereotype of non-verbal, she automatically sees all the ways that Kris communicates, and to her they're normal and understandable.

The Work We Do Together

Wuzzy is Kris's mother, and she and Kris are very close. Most people would call the agency if they had questions at their site. We don't bother, we just call Wuzzy because she really cares and she's just down the road. Wuzzy is such an integral part of Kris's life; she's over at least three or four times a week. Even when she's away, we all know how to reach her. She'll call us just to check in and see if everything's okay and whether Kris misses her. Sometimes Wuzzy will come over and Kris will be all kisses and saying "Oh, Mom, I haven't seen you in hours." Other times it's like, "Mom, I don't remember inviting you over to my apartment." She loves her mother, but she does enjoy her independence. It's a funny personality she has.

What Wuzzy really wants the agency we work for to do is to find Kristen some activities where she can interact with the community and make some lasting relationships with different individuals. We gave them lists of things that Kristen is capable of doing. We even made up a list of jobs she can do with her skills. So we gave them about fifteen options for community activities. Kristen and I got tired of waiting for the office to call the library so we walked in one day and said, "Hi. Can we volunteer here?" Kris and I got tired of the office not calling to set up the children's museum so we walked in and said, "Hi. Can we volunteer here?" Wuzzy asked the church if they had anything they needed help with. They needed volunteers for their "Meals for Me" program. Wuzzy said, "Great, Kristen's coming to help." All of the places she works love her. She can just show up and they're glad to see her.

A few months ago Wuzzy had someone from the upper management of our agency come down one day and talk about community-building activities. The woman who talked to us wanted to know what some of the things to do around Brewer were. We told her about all the places Kristen goes. She said, "What do other 28 year olds do? Isn't there a bar around here where they have singles night?" I was in shock -- bring Kristen to a bar? What are we supposed to do, put a twenty down and tell the bartender to keep them coming? Hide in the corner until she needs us? This lady was completely out of it and it was so sad. They don't see the day-to-day and they don't understand what kinds of things Kristen wants to do and should be doing. They don't know a thing about her.

I had to do a NAPPI training for work -- Non-Abusive Physical and Psychological Intervention. It basically explained to me how to defend myself if Kristen were to come at me with a steak knife. I sat through the whole training thinking, "Kristen can't even hold a steak knife." The worst thing that will happen is that if we're having a really bad day and I do something that really irritates her, she might pinch me. I say, "Kristen, don't do that." If she does it again I say, "Kristen, don't do that" and I hold her hand because she can't pinch me while I'm holding her hand, so she stops. We were sitting in this training trying to figure out how to get rid of behaviors, and that's fine. But we also have to figure out why she's behaving like this. There has to be a reason, right?

For the longest time we couldn't figure it out, but she just hated the cartoon Snow White. Normally Kristen loves Disney movies, she has all of them and watches them over and over again. Sometimes she would put on Snow White and try to watch it, but she never made it through to the end. One day we were in the kitchen and she was watching it and she started crying. Usually at that point we just turned the movie off, but this time she left the room and it was at shift change so we forgot to shut the TV off. She came back into the room just in time for the end and sat down and watched it, happy as could be. We figured out that the reason she would get so upset was that she didn't like when Snow White falls asleep in the movie because she thought that she dies. She had gotten so upset that she never watched the entire movie to find out that she actually woke up! It's little things like that that you wouldn't even think of that for her are a big deal.

Kristen has a habit of going into the kitchen and picking up her cup, and when she realizes there's nothing in it to drink she just tosses it. It's her way of asking for a drink. One day I figured out it's so much easier for me to pour a little bit of juice in the bottom of her cup and leave it in the refrigerator and say, "Alright. It's right there. You know how to get it, so don't go throwing cups across the room." She can go in and drink when she's thirsty and put it back. I only leave a few mouthfuls, because sometimes she can't hold it and she'll just drop it. I figured it's easier to clean up the mess after and let her have some independence than making it so that every time she wants a drink she has to come and drag me to the kitchen.

Think to yourself, "What do I have to do today?" Imagine having to do laundry, dishes, go to the bank, go grocery shopping. Sometimes I'll see Kristen just stand at the bottom of a flight of stairs and know she's saying to herself, "Alright, I need to get up that flight of stairs but first let me look at it. Okay, there's nothing in my way. Now, what I'm going to do is I'm going to hold on to the railing and take one step, then go from there." She has to make a whole plan to go up a flight of stairs, and she has to do it every time. We take so much for granted. She has to overcome so much more than us, yet people think that she's somehow worth less because she can't do certain things. They think because she doesn't hold a steady job and doesn't have her own income she's a lower member of society, or not deserving some things because she doesn't work for them. They can't understand, because they don't see all the work we do together every day.