Growing up As a Brother or Sister of an Individual With a Disability

Hello, I'm Janet Karl a consultant with the Iowa parent educator connection project. Each of the women you will hear from today in this informal dialogue has grown up as the sister of a person with disabilities they will share with you their perceptions of what that experience has meant for them what they've learned about themselves and other people and any advice they care to pass along we hope that this discussion will serve as a springboard for further conversation on the topic among parents educators and other brothers and sisters with the same opportunities and challenges before them our panelists today include Allison Sampson a junior at Nevada High School Terri Stokes a senior at Valley High School in West Des Moines Charla you'd see a speech-language pathologist for a ea6 and Terri Fritz a special education teacher at Pleasant Hill School in Marshalltown let's start with a question about what life was like or is like at home with this brother or sister with a special need where there are special responsibilities you had or have were those things that you just knew to naturally pick up or did somebody have to ask you to be especially involved with that brother or sister Terry would you begin I'll start off with tell them about my brother Mike he's the oldest and he's 26 years old and he was living in Des Moines with my folks right now folks are thinking about group home situation but he works for ARP so he rides the MTA bus which I won't even do so he's ambulatory he does not have physical handicaps you know the mental disability and teachers classified him as a trainable mental retardation he cannot really read or write all that well he's learned his name because he's had to sign it papers and such and I always had fun doing that wit though I guess I mean you speaker responsibilities I don't call it responsibility so much my brothers had to learn to do things and I have known this I knew when I was a little kid I helped him out a lot of things like dad told us go clean the room oh gotta go help my cuz he know how to run the vacuum cleaner and I tend to help him out and my brother got a little lazy there depended on us for a little bit but as I said I don't see there's responsibility it's just part of the family and we just you got to teach him he's got to know how to do these things okay um I should talk a little bit about my brother the youngest of five in the family his name is Lawrence and Lawrence has Down syndrome he's 38 years old so when you're talking about responsibilities he's growing back that's looking back a long time I really don't recall any major responsibilities Lawrence was just a member of the family and if there were added responsibilities I don't ever remember thinking of them as responsibilities occasionally it was taking Lawrence into town because he loved to to go places but that was probably what we would have done with anybody younger member of the family took him to MU because it would be a good movie but you would have done that anyway I think more more of an opportunity to I think than anything else is to grow and learn about meet other people it was just part of the family okay thanks well I had an older sister and her name was sherry and she recently passed away it's about six months ago and she had battens disease and it's very rare its genetic and I'm she's slowly deteriorated she it was a neurological disorder and the way I always remembered her was she was five years older than me and so when I remember her she was blind and then a few years later she couldn't walk and then she slowly lost her mental abilities and uh I I didn't have any assigned responsibilities it was I wanted to help her because she was my sister and I loved her a lot and I had a lot of special things to do with her it was almost like having a younger sister than an older sister since she was in a wheelchair I had to help my parents lift her and move her and there were times the last few years I'd help feed her and a entertainer you know you know maybe since she couldn't see you know if we went to a movie we'd have to sit right next to her and tell her what was going on but I didn't mind it wasn't a responsibility it was just helping her out my brother has several palsy and he's 21 and after he graduated he moved out and he's living on his own now I'm very proud of him because you know we always thought he that he'd never make it because Ric would get lazy awesome what they you know you treat him as the handicapped person in him you know he can act it to the health isn't but um he as far as responsibilities I didn't find it I didn't figure it as a responsibility I just did it and we do things together and he was in a wheelchair also and so you know as far as opening doors or going to the mall and try not to run over anyone Sheils and lifting him I didn't do much of that towards the end but when I was younger I can remember when we were a lot younger he was his room was upstairs and then it finally moved downstairs but on Saturday mornings when mom and dad had gone to work or mom was still in bed or something I used to we'd literally help brick down the stairs by just literally dragging him down the steps but we thought that was great but you know so you always had to help him along but we always did things in pairs and he was five years older than I was also so there was an age difference and you did kind of treat him as the younger one because you you did have to help him a little more but you want them to experience the same things yeah you want them to have the same fun do the sports go to the movies get out and talk because they need that you just want them to be part oh yeah but then they always were there to listen to you yeah Greg good moon and then her he never really ever complained about anything well Alison have your would you say that your family relationships have been affected by your brother's disabilities yeah we had to be closer and stronger at times when he was going through surgery you know or he was so you know we were closer and then other families I suppose I am I know my family is I'm very proud of my family and I feel like I have the best family that there is and I isn't any better than any of my friends who have normal brothers and sisters and I feel very close to my parents because they always included me in every decision and I always knew exactly what was going on it kind of helped me grow up a lot quicker than other people mm-hmm I guess I would respond as well that I was always very proud of my family and my brother is I mentioned his 38 years old and so we're talking about a time and I was history where there the wind always kept at home and I know that at the time he was born the recommendations were to to institutionalize him and I was so proud of my family and always have been that that he stayed at home with us and and also proud of friends and neighbors and that are so good and still I meet some wonderful people you know but I was thinking when you said institutions my first thing you know 26 years ago that's what it's told to my parents told me oh your son well put him in an institution he'll never be able to walk and never be able to do this or that and hear my mom talk and now she's my mom and dad just uh they can remember things back to his birth and still gleam about my mama you want to bet he'll walk we're not gonna put him institution and now he's capable of doing so much right so I've gotten my parents have always they've kept me I always let me know things and I always talked to them about things I always wanted to be knowing about my brother always I was like I was a great joy it's like look at me everyone it sounds like it's been a strengthening experience for your families it's not been so stressful that it was a negative experience in any way do you think no probably the only stressful part was when they are sick and they are in the hospital yeah but that's stressful to any family right sometimes decision-making is hard decision-making regarding what to do is they get older I know that was very difficult for my mother when she first had to make the decision to place my brother in them in a different setting it's hard for him give him up more than anything else and as she consoled it with all of us to get our opinions and I think finally she she made the decision because it was better for him more like the parent you feel like the parent along with your parents well how about your social lives did having a brother or sister with a disability hinder your social life in any way Terry I know it definitely brought in mine I know with my friends when I had met a new person they'd have to come into the house and meet Sheree and if they did not accept Sheree I would not accept them so it was almost like I have very close friends very good understanding caring friends because they accept my sister and him I've met so many people through my sister you know people who worked with her in her school people that just stop like you go to a restaurant they stop to ask you know the curiosity meets so many people through natural curiosity and I just they're all wonderful people and I've never been made fun of because of my sister no one ever made fun of her because they knew she was wonderful mm-hmm-hmm Allison how about you um brick out well he was older than me and he went through then innovative high school he didn't have to go to a special school or anything although my mom had to do a lot of fighting for that and so but I was always known as Rick Samson's sister I was never known as Alison Sampson and you know because everyone thought it was a special person so I guess you know he kind of opened a lot of the doors there and but my friends I think my friends are closer I've got some of the best friends simply because they can't accept Rick and you know if they didn't then they they just never would become close friends so it was a special thing there and just he he always looked at the brighter side and he always found the right way or he just never complained and stuff so he made kind of made me see things through different eyes than other people what I think so you know you kind of recommend getting a friend with a handicap now but brother or sister in it so it's special it really is social my brother's a very social kind of guy huh and I couldn't help but learn a lot of things from him he's a very outgoing person loves to talk you say hi to everybody and it's odd I'll go home now and if people walk by the street Michael say hey we're down out in the mall or song hey Mike hey you do I know who's that much oh just a friend from that I met our people on the bus that's funny the bus drivers yes to cross a street to get onto the bus and the bus drivers will wait for him they know it's my brother Mike here we go catch up and so there's a lot of regulars than he meets and he just made me be that much more open with my friends and such and it's like them if Mike pretty much he acted like he always knew my friends and I was kind of neat it's always there's never shy about wanting to talk with them so it kind of made it easier for my friends I would never warn my friends so to speak it might be rude or cure that burping nothing like the other brother you might do that they just come into the house and I meet my brother and my Mike my brother Mike just broke the ice for me inside I think everybody has expressed pretty much the way it was for me um friends were friends if they accepted my brother and I don't recall never warning people about my brother either you know they they but I grew up in a real small community where everybody knew of Lorenson as I grew older and moved away from home we I'd occasionally talk about him but probably broadened experiences made me more tolerant of people and more acceptance show more acceptance of people's differences and I think that's a real positive thing have there been financial effects on you or your education because of the financial drain related to your your brothers sisters disability Terry do you have that experience um I know that since my sister has died that we don't have the medical expenses anymore and I never felt deprived I had everything I needed and everything I wanted but now but we don't have those extra expenses it's my parents are so carefree and they want to go out to dinner all the time and you know I can I can go to any college I want there's no you know I I want a scholarship but there's no pressure anymore that I have to have one and it's it's relieved a lot of stress because even though I shouldn't have worried I I did worry about money okay how about equal treatment at home or were there times when you were growing up that you felt that your parents were maybe a little harder on you than they were on your brother or sister Allison do you remember any experiences sometimes um as far as helping Rick from here to there getting things for Rick because he couldn't reach so high or whatnot you know it was there and you know but if mom and dad weren't around you'd come back and say you just say get it yourself you know it was the sister torment if you're not nice you know and then he'd run me over and so I'd get it so never really mattered anyway but my parents were always really fair you know it was more I felt like you know I wanted to help him or you know it was me doing the extra or whatnot but they always tried to be really fair and in some of those things he just couldn't be because it's you know if I had to do something for Rick if they were gonna go out and they wanted me to stay with him you know because he does need a little extra help but not a lot but then they'd give me my time where you know they'd say okay you know go on out you know this is your time but it was nothing I ever considered it just be as if I had a younger brother and had to stay home and babysit so but they were always really fair in their decisions and making sure that I had my time and but I never considered it like I had to sit there and stay with him because we always had fun we'd screw around mom and dad are gone you know you take it never felt the man says it says something I always wanted to do it's like my parents needed a break I was always intrigued its to Triggs me to this day about my brother and just the just people in general intrigued me I never felt the man and I wanted to give my mom and dad a break I wanted them to go out I mean it was fun to do this I said they need to get out - they let me have these things and why can't I give a little bit back I don't recall any major responsibilities duties or even any difference in treatment my parents we grew up in a farm and it was a dairy farm so they were tied to home anyway so there was never any problem with my having to sit with him the only difference I can recall mom saying was why can't you all be like Lawrence he was so meticulous and he was such a and so she always been more of a teasing vane than anything else why can't you all be as neat as he is would be a great house cleaner I know I'm in my situation my parents didn't treat me any differently I know my my mother was always concerned that I wasn't getting enough attention and I never felt that way and I I know that I was a lot harder on myself than my parents ever were I put a lot of pressure myself to be the best and you know I wanted to do the best so I wouldn't cause my parents any more problems because they had so much to worry about so much to think about with Sherrie I didn't want him to have to think about me so I was I was always very hard on myself because and I mean I have I mean I have legs I can run with and I have a mind I can use so I'm gonna take advantage of all those opportunities that I have because I'm very lucky exactly well when you think about your brothers or sisters future what role did you see yourself playing in that future future plans about where he or she may live and what role you may have with that Charlotte I guess for me the future is here I have a few years ago at recommendations of the group home and that people that operate that they made the recommendation to my mother that she set up a coke guardian so that that person could begin to assume some of the responsibilities and she was getting elderly so um she consulted with all of us I kind of hoped that she would ask me I'm always wanted to assume the responsibility of looking after Lawrence in it maybe goes along with what Terry said you you become harder on yourself and I and I don't think it's harder I just wanted to help out as much as I could midline so I became Co guardian she asked our other sister and brothers as well they I think I held one are accepted the responsibility and my mother has since died within the last year and a half and I am his sole guardian so I am function as signing the papers that he needs to go have take things that of that sort that he needs to have taken care of he comes to our house considered our house as his home now he has his room or his office as he calls it where he has his things that he took from from home and I comes to our place for vacations and less Sun my brothers our sister want him to come there and I think it's kept the time ties between us a little bit stronger we have to coordinate plans a little bit tighter and then we might have otherwise so vacations tie in a little bit with where Lawrence is going to be and what he's his needs are so we keep closer in that sense and I'm scared I have a number of different feelings I'm scared I'm anxious no wonder what's gonna happen I I don't know that I can't remember when I wasn't thinking about it I've discussed with my parents that I want to be the guardian if something should happen to them they're talking you know group home situation too but you know the years wait for someone to get in yeah you know they have him on a list but and then to get him in and I wonder oh he can't really manage his money he can't mister Danna how much more can he learn how much more can I help out with us I'm just scared huh will he be living with me will he be in a group home will he like it in a group home will he feel like we're leaving him that type of thing I just I try and think about how he feels about situations how I would feel and just try when I go home to keep reassuring I know there's I don't know it's a scary feeling to wonder what our own future is gonna be like and then you worry about another person possibly what do you think about in your cases what you might do after you finish your education or in the kit in your case is Terry and Sherlock what you are doing now do you think that your choice of vocation has been in or will be influenced by having grown up in the home with a person with a disability mine I I pretty much have to say heavily probably influenced by my brother I've always been around the schools especially at schools as I'm a next Air Force brat so I've been overseas in different states and such so I've been open up to many school situations I've always volunteered to do stuff in the summer when I was a little girl I'll help out with all the kids my brother's part of this you thing and oh let's go help out and I was wanting to do that I've been wanting to be special that teacher and never changed my mind once since third grade I was straight ahead from there and this is what I want and I always had that chance that I was lucky the teachers knew I was genuine in my feelings and they would let me do things like lead a little calendar crew I remember letting her let me do that and I was it was fun yeah and as I said I was intrigued and my passion grows more and more every day and I always want to know more I yes it did have influence I can't say I even knew what a speech pathologist was when I first chose this as my career but I knew I wanted to do to work with special people in some way or another but I also knew I didn't want to get that closely involved I didn't think I was emotionally ready or capable of doing that so I heard someone talking about this field and I thought I had that son just just but I need and in it and I think it has worked out very nicely I am enjoy it and I probably was drawn to a field because of my brother Jerry when you think about life in the future and a vocation what do you think about it I'd like to go into education not necessarily special education but I know that my sister has influenced me to be a very caring loving person and I want to help everyone as much as I can and I like to go into education because I love to learn I have this mind and I want to use it um Rick has really affected me in that he makes you he he's had these opportunities but he just hasn't been able to take full advantage of him or whatnot so I he makes you want to strive to be the best but he's made me a people person I suppose therefore I'm I want to go into business which not education I just simply because it's just not my my thing so but he's in him the influence has been on people being a people person and and working hard for it and just not always sitting back and letting the next guy do it we have time for one last question and this is your chance to say anything that you haven't gotten to say so far is there something that you think that parents and educators in particular ought to know about what it's like to be the sister in all of your cases of a person with disabilities Terri people always say to you and your brother so special yeah my brother special not because he's mentally retarded but because he's my brother it's just I sum it up that way okay I guess I would urge them to - to not assume that because you have a brother or sister with a disability that it's going to be a problem in the family many times it's such a opportunity and such a plus in your family and always remember that there is family out there to be considerate of and remember but don't assume they've got a big problem nice everyone should realize that we're all normal people to us our families are normal yeah yeah but there I've never known anything different than having my sister around in the way she is where she was and I'm I just want the parents and educators to be aware that to ask us questions if they're wondering about anything about our feelings about our certain cases to just ask us cuz I think we're all very comfortable talking about our brothers and sisters it was the normal family setting for me also and I you know when Rick did move out you know it was like more like he was leaving me then I was letting you know that he was leaving the family I was just a normal thing and if anything it made you it's made me stronger more caring person anything so he's just I wouldn't have had it any other way had I you know I wouldn't have I've never said you know I wish I had a normal brother that could do normal things because everything he does is normal to me thanks thanks for your participation today I've been impressed by how positive and strong you all seem you know this is a situation for people who aren't in it but seems pretty scary and it seems hard to think about growing up with a person with a disability but you've made it seen not only possible but to be an advantage in many ways thank you our panelists today have been Allison Sampson Terri Stokes Charla UT and Terri Fritz I'm Janet Karl thanks for watching on behalf of the Iowa parent educator connection project