Hello and welcome to the If We Knew Then Podcast I’m Stephen Saux.
And I’m Lori Saux
And today we are joined by Steven Gustafson a founding member of the group 10,000 Maniacs. Steven’s older sister Cathy had Down syndrome and today he shares with us personal stories about advocacy and the impact of having a sibling with down syndrome.
Steven’s parents were advocates I think maybe before that word was a popular thing they were pioneers of advocacy and they created change just by doing things differently and the stories that Steven shares are beautiful tributes to his sister Cathy and the impact that she had on his life on a personal note we are big fans of ten thousand maniacs so a little smitten going into this interview so here it is our gift to you this interview with Steven Gustafson which was a tremendous gift to us.
Hey Steve how are you is it Steven or Steve?
Around here I’m called Dadio.
Well really good to have you on the podcast today I was very excited me to.
Thanks for having me.
Well we were really excited. Stephen saw your post about your sister and thanks for coming on today to share it share your story about her because a lot of the times you have questions about how having a sibling with down syndrome will affect their other children and I think this is going to be a really great episode to alleviate some of those fears and concerns so thank you so much for coming on today you’re welcome you know we did at prep of a few questions here just to kind of lead in but maybe just tell us tell us and our listeners a little bit about yourself well there’s a lot to tell because I’m old but %HESITATION I was born in nineteen fifty seven %HESITATION my dad was in the United States Air Force he retired sixty four they moved back home to care for %HESITATION my mom’s father and so I grew up in the house she grew up in in which schools and she did we always had music around our house at love listening to it my dad had a old guitarist fathers are taught myself how to play guitar and went to Jamestown community college %HESITATION where a friend of mine from high school and I just %HESITATION we’re in the ground Laura starting a %HESITATION ten what non commercial radio station this was in nineteen seventy six or seventy seven and then this new music came along called new wave and punk rock and we really sort of got into that it’s sort of cool do it yourself a style of music at the radio station a young young lady I think she was much better than sixteen when she started at the college they Natalie merchant came and joined our radio station as a DJ and painted the walls and stuff because she’s very artistic and you know we just started a band it’s really to entertain ourselves and %HESITATION S. Natalie she wanted to come down to our rehearsal space in an old %HESITATION warehouse and she did it and it does mostly just smoking pot and listening to music and playing songs and have a parties and %HESITATION %HESITATION but it was really fun and we were very good at playing our instruments so we could play you know stairway to heaven so we just wrote her own socks and the first gig we played in Erie Pennsylvania and nineteen February nineteen eighty one we got kicked out for having an argument with a bar owner and %HESITATION there’s another story to it but I won’t get into that but we thought that was the greatest and the Florida State University up the road from us said a %HESITATION tone master program audio engineering so we wrote we took our songs up to the school and we were part of a senior project and we recorded five songs and pressed on vinyl and because of our connections from our radio station we knew a bunch of the college radio stations around the east coast we call up and say where bands play and so we booked we bought an old mini school bus van a book your own tour down to Florida where my folks live and we zigzag down the east coast to %HESITATION braids in Florida and go to their house and rest for a week or so and my dad said we eat all our food drink other liquor and use a bother hot water and %HESITATION did book shows going back home to Jamestown and we did that we did that run three times in the fall of %HESITATION eighty three I am we set our second independent record to %HESITATION DJ in London John peel who was on the BBC one he was sort of the the hip DJ and you like one of our songs and it got voted in his his listener poll for that year of like twenty third out of fifty and on the strength of that we got three gigs in London and on the strength of that from presser received we’ve actually got a record contract here in the states and %HESITATION %HESITATION November nineteen eighty four with Elektra records and started making records for that our first one didn’t do so well the wishing chair which is thirty five years old and %HESITATION %HESITATION they let us back then record companies are lots of money from sales of CD’s so they would invest in our distance you know it if your record to sell right away so we did not record in my tribe in that went that went gold and that got us %HESITATION some %HESITATION port radio stations and that got us on late night television %HESITATION actually was Johnny Carson show back then but was Jay Leno was the host and David Letterman %HESITATION and that got us more tours more gigs and you know it just worked you know we made some decent money backed up and my wife had just had our first child so we bought some land out here for his brick New York and %HESITATION built a house which is what you’re looking at right now we’ve been here twenty seven years and in the tool a two thousands I worked as a technical director producer of musicals at Jamestown community college’s just retired from that right before the pandemic kit which is really kind of a brilliant move on my part although I didn’t I didn’t know it then and %HESITATION I click social security while so so family family is a big thing for you is still in the the same same town and that that seems to be a huge huge part of your story yeah you know I kind of feel like a king here you know everyone knows me and %HESITATION we know the mayor and you know it’s just small enough we only restaurant my keyboard player in my band my best friend we bought owned a restaurant for a while and %HESITATION %HESITATION it he described it as like we each bought brand new range Rovers and pushed him off a cliff because it failed miserably with our our combination of ignorance and arrogance but you know I like it here it’s my home town we my wife and I really wanted our children to go to go to the same schools their entire life and live in one place and %HESITATION and we did that and so now we’re pretty much empty nesters my son had to move back with us because of the pandemic but we my daughter got married here last month we danced with ten thousand maniacs on it’s also about your sister Kathy well she’s the oldest of three %HESITATION she was born in nineteen forty nine our middle sister Leanne was born %HESITATION in fifty two and I was born in fifty seven you know my dad was in the Air Force so he traveled a bit and when I was bored he was stationed in Madrid Spain and Kathleen landed lived there for almost five years so Kathy actually knew Spanish at least a little bit and %HESITATION they were after I was born a move back to the states and we moved to Omaha Nebraska and second quarters were %HESITATION you know till I was six and then he retired back you know I didn’t think Kathy was any different than Leanne she was my sister you know we did live in base housing but it was close to that and %HESITATION most of the families were very accepting of Kathy and you know there’s a lot of kids as my dog either but %HESITATION you know Kathy she didn’t have sure I don’t think she really heads %HESITATION real good schooling opportunities were near in Omaha %HESITATION and when when we moved back to Jamestown in sixty four there was a special needs school is really sort of a one room schoolhouse that %HESITATION other children with disabilities of course they were called mentally retarded back then and %HESITATION my mom always insisted on you know her going to school and %HESITATION learning and Cathy she got to reading at a second grade level she like to read it changed a little bit we moved to %HESITATION to Jamestown I think because we were so insulated back in Omaha living you know kind of on an Air Force base of course I was older and I noticed people staring at our kind of back giggling but you know given that sort of side I sort of kind of look at it kind of it made me uncomfortable I think the only fight ever been is because someone said something to her and I one of the kids on the street next read over so I got in a tussle with them because they don’t like it by then I was you know ten years old or something to realize it will yeah she’s definitely different but she was never treated different she was just one of the siblings and so Kathy just for our listeners Kathy is your sister your older sister that had down syndrome when did you first understand what down syndrome was and how was it presented to you it wasn’t you know I mean you know when I was older my parents said Kathy has down syndrome and I really didn’t know what it meant except that sure I mean she was different I thought that in a weird way that she was my oldest sister but she was my youngest sister because I thought I was smart she was %HESITATION although I was my parents were very proactive in getting Kathy in education and there was a local achievement center was what it was called and when she was maybe eighteen I think she had to be to go work at the treatment center and they got paid to work there and it was in it was a little I was a little but it’s kind of like a little warehouse room up above a auto store they mostly made change for the parking ramps and %HESITATION snowmen sock puppets and things like that sort of arts and crafts things which is great because you know Kathy had a bank account and then she would get to spend their money I mean did it take much but she would be able to buy or sell things and my parents became %HESITATION they got on the board of directors my dad was a banker and and he knew you know a lot of people in the town that had money and he convinced them to invest you know donate money to this cause and they got the achievement center to move into its own building and expanded the the work that they did and eventually %HESITATION the resource center which of stock account is called now is the second largest employer in the county they do military contracts they make tents for the military they do things for local industries there’s a local brewery that they %HESITATION at the resource center they package other bottles and for a while I was even a %HESITATION weekend house so I was always around people with disabilities I’ve just found them to be very fascinating people in fact I talked my band in a few times and when we were starting out we played at the local group homes just to play with guy go visit and talk to you know get speeches are just you know make the clients and things like that what one thing that was really made quite an impression on me there is a church at the corner of our street when I was growing up and it was a woman on Thursday night she cannot play piano for people from the resource center and their parents to bring him over and %HESITATION she placer ragtime stuff she was just older woman and I just go I always wind up with Kathy had Walker up and just sit and listen and watch a dance and and just be around around I just I really enjoyed that time we found with our daughter that %HESITATION having someone a sibling in her life that has down syndrome is taught her some patience and compassion she too wasn’t she too got her first little scuffle on the playground %HESITATION advocating for her brother yes she does stick up for me she’s she’s the old she’s an older sister and an act sometimes like the mom you know it which is a typical thing too but really protects them and and %HESITATION we’ve we’ve had discussions with her about that because we can all kind of get a place where we try to police everything and we just kind of get released you know not overly sensitive maybe I maybe but we just act and you just kind of drives of crazy if you’re gonna do that you have to give people %HESITATION the benefit the doubt that they’re there don’t know things there they may be just not educated on on downs what down syndrome is and and what disability means which I can imagine back then was definitely the case you you said something you said that you thought you were smarter than Kathy but you weren’t can talk about what you meant I don’t know she she just had this you know special quality about herself and the way she sort of viewed the world in other people she was very accepting of everybody she sort of treated everybody the same she had no bias and I kind of respected that about her and she also taught me patience and compassion and by my time being around so many people with disabilities %HESITATION I think I had a lot to do with that I went in to ask you so when you went off to school and you did you you left town did you live at school and and how did you carry her work with you how did that affect you in school well I was I was very selfish %HESITATION older teenager I thank but James our community colleges you know five miles down the road I lived at home in fact I lived at home until my parents sold their house and moved to Florida maybe the hopeless %HESITATION %HESITATION and that was right about the time when the band started you know so I didn’t see Kathy a lot I’m although it see you’re in you know in the evenings at home but I was busy dating and going out to bars and being at school all day and sort of and are you know for a while I had an apartment and I come home when I needed %HESITATION you know to do laundry and things like that but I was very sort of busy with my own life and then the band started night left you know we started traveling and that my parents and Kathy moved to Florida so I didn’t get to see her much except maybe when we when we’d be down there and in fact we played for their research we played a concert for the resource center to help that’s a riot %HESITATION you know just a lot of memories and a lot of very sort of crazy stories my parents were very let Kathy be very independent and they really ignored what other people would say or you know they don’t bother with any of that that was wasted time you know they work would work all day Kathy would be achievement center and then come home you know my mom or dad to pick her up when she come home and then my parents would go out you know they are members of the American Legion and and Kathy was home a lot sometimes by yourself and my parents were fine with that you know what she did a few stupid thanks but almost burned the house down once but %HESITATION and I’ll tell you that story we live in a house of smokers there’s a lot of %HESITATION cigarette smoking going on and my parents I think particularly and to college I was about fourteen and it became home and %HESITATION walked in the door and kat or Kathy rummaging around in a room which always meant something was up and so I I yelled up you know what’s going on she should say thanks I knew something was really out so I went up to room and there was a burn hole in our inner blanket about four feet by three feet in our wool blanket on her bed and I said Kathy you know what happened that should say anything and I said it’s okay you know also moved out of mom and dad what happened and %HESITATION she tried to light a cigarette with a kitchen match and it flamed up and burned her eyebrows and she threw it and it landed on a bat and she would have to put the fire out which amazes me you are eight years younger than Kathy man so these are some of these questions that ask you will probably have to be just things you heard passed down to you but do you know how your parents were told about Kathy’s disability and and how they reacted to it and how people reacted around them well Kathy was born here in Jamestown New York and this was forty nine very soon after that they took her to a specialist at a hospital in buffalo New York you know to see what could be done because you know I don’t think they knew what it was I don’t think anyone did really %HESITATION met many people didn’t and the doctors there said you just leave it with us we’ll take care of her and my mom would have none of it you know she was a daughter their first daughter too so I think it was a little scary for them you know their first born and then I thought well aren’t the researcher would have down syndrome you know they didn’t know so you know I I think at first it was obviously there was some sadness because she wasn’t a normal child but that soon passed you know she was just their child that was just as simple as that she’s our daughter what you gonna do lover that’s what you gonna do and they did yeah I think that’s I think that’s the key is that is for parents to know and and for your parents back in nineteen forty nine I can only imagine what a challenge that was for them at the foundation of the perception that word we are still challenged with today is %HESITATION them mindset that they had about down syndrome when Kathy was born did your parents ever talk to you about the support or many of their challenges are how they saw it through well you know they they sacrificed a lot I know that when we first moved back to the states my dad was actually stationed way up %HESITATION northern Maine and Lauren at an airforce base and I was you know a year old but my mother found a school that would accept Kathy that had a special education department I guess you know for lack of a better term and %HESITATION it was forty miles away and my mother drove over there and back every day because you know Kathy was nine or ten and she just water in school she belonged in school our middle sister Leanne you know I’d share room with Kathy so you know she talk at the at attire shoes and you know she was she helped a lot and they were closer in age correct yeah there is three years apart well because what we experience and what I’m hearing from you is your relationship and reality at home with Kathy as far as supporting her abilities and even just coming in and having that conversation and saying that’s a typical sibling relationship where you say I’m going to smooth things over with mom and dad and acknowledging the fact that she didn’t burn down the house because if if my daughter Sophia it started that she might have just walked out of the house and you know and just and let it be written and let it burn and she’s our typical daughter so it’s like that’s a huge acknowledgement to the fact that the outside perception which I feel in our lives causes most of our challenges and what we really experience at home it sounds like it’s very similar to what maybe you experience it sounds like people you talked to that have siblings with down syndrome or %HESITATION or parents of children down the gym you find out that your life is more normal than you ever thought it was going to be when you when you look back at you know for parents when they first get a diagnosis this all kind of things that go through your your mind yeah but it just becomes your life and it’s it’s normal well I certainly think it’s different for parents and it is for simply you know sibling rivalries and simply arguments and games together and want to win and and you know although we like to that can’t be beat me at checkers a lot because it made her happy but it’s very challenging for up for parents I think you know because Kathy was just my sister we played okay all the backyard one time all my gosh it always led around the bases and I Chuck said the ball at her feet after death eater had a defender of the cops are like all it is okay and can can you talk a little bit about that about your sibling rivalry and your relationship with it is a different relationship I mean a parent is still responsible for the child you know and there’s these pressures but yeah there’s there’s some and honestly especially when you’re talking about a time that was so different than now you know that’s that’s a lot of concern that we see still parents are so concerned with the fact that having a child with down syndrome is gonna have on their other children so can you just said it’s going to be negative yeah I negative affect and maybe you can tell stories to put them at ease I think a because I was the only boy I did I didn’t play as much with Leanne because you know she was more mature and shit or girlfriends and %HESITATION so I I played more Kathy cards you know playing hearts and fish when my middle sister went off to %HESITATION to college you know it was just Kathy nine home we we do stuff to Cathy like to read watch TV and do she %HESITATION made pot holders you just love to do that and %HESITATION so she had her share hobbies and %HESITATION her interests and that you know like I said I was you know I was just kind of sometimes very selfish and self well more self centered out that that selfish but self centered because I was growing up although my wife might say Hey I have a growing up yeah the things that you had mentioned as far as having her as a sibling and even just letting her win at checkers that’s not something that most civilians will do for each other so it is that like a is that a quality that kind of resonated in you as you got older it just that I don’t know if you’d call it just I don’t know empathy or %HESITATION at your foundation your foundation is and I’m going to win win win your foundation is sometimes letting someone else when because it it makes them happy and is that something that that you you carried into eight your adult life absolutely you know I like to be fair %HESITATION I liked I just like to boss people around in in my %HESITATION in the band and things like that because I’m sort of a personality kind of guy and I’d rather do it myself sort of thing but what’s so important you know that you have to win all the time life’s a game I like to play at the game of life and %HESITATION I like to have fun and I like you know I like to laugh %HESITATION beer on the family and Kathy helped me understand that I think just to be kind to people especially strangers and I wanna go I wanna go out and say hi how you doing you know or what do you do when their parents gotta give me out looks and I think it’s okay hello I’m not a crazy guy I’m a maniac but I’m not a crazy that’s good well it’s moved on to Braden ten with Kathy and %HESITATION Lee and I it was out of the house that point I guess in that hand and how was that move for her and I think it was a challenge for Kathy you know %HESITATION if she I mean she lived so long in one place I think moving kind of up to you know sort of you know what’s confusing to are a little bit but you know she acclimated and you know she’s pretty tough you know and then she got into she got right into %HESITATION achievement center down there and started working there %HESITATION my parents discovered that there were a lot of other parents with adult children with disabilities so they had this idea they got a bunch of the gather and said all right fork over some cash we’re going to buy a house in returning to a group home for the resource center and each kicked in five thousand dollars had enough for a down payment bought a house had it fixed up it’s probably a lot of the work donated and started a group called it was the best thing for she was suddenly really an adult and didn’t have to rely on my parents for things and didn’t you know and it’s just like any shit you know childhood get out from underneath their parents and %HESITATION and she thrives they had a pool should learn how to swim she you know she was getting paid again she got a job working for the hospital folding clothes in the laundry she took a city bus transferred to another bus got to work work and then got on the bus and change buses again and we’re back to a group called the couple that ran at Regis fabulous people Kathy really love them and consider them her second parents and you know and she’s tried doing that you just should look beyond a group called well creating not one of the first group homes SO it’s so revolutionary just to your your parents the advocates that they were I think given maybe before that word was so prominent and the down syndrome community but just it sounds like just from doing they they advocated and made these changes that are really at the foundation of the changes that were still pursuing I mean two five for an education before idea was even around as Sam we have a lot of thanks and a lot of gratitude for what your parents did just taking their daughter home and going against the grain that’s the best I mean the strength and the courage that they had %HESITATION think about that sometimes it yeah I am was our our second child and we do we do think about if only it was our first child that does set differently in your in your in your mind and and and and when you’re going to have more kids are you’re thinking to have more especially at a time when the I can only imagine what they were told that you know you can look up in the medical books that they were told but to actually experience that and life they at they they were definitely advocates without wearing that title and creating a first home and showing people as far as independents like you know we all we all just want to have our path in life we all just want to to be able to live that life and all of this yeah and I think that’s really incredible did did Kathy ever talk about the jobs that were offered and given her did you ever talk about maybe she wanted to do more or was she just happy doing those jobs well I think she took a lot of pride in what she did you know she would loom pot holders and selling to all my parents friends and should rake in the cash for that I think more of that %HESITATION that she made at the resource center %HESITATION it she like earning money she thought that was the coolest thing and having a bank account when I was freedom yeah she borrowed stuff for %HESITATION records you know what kind of music that you like well our father wouldn’t let us watch the Beatles the first time they were on it the ed Sullivan show %HESITATION so we’re huge Beatles fans and %HESITATION Leander middle sister lives you know she was into all that the the British Asian stuff hermits hermits and she like Laura Nero so we you know we listen to a lot of the answer records and %HESITATION Kathy you know selected to and my sister had original beetle releases on the VJ record label the first releases we haven’t got a you know right when it came out Kathy returning a ball over a overall of the Beatles records my sister is so bad %HESITATION %HESITATION that %HESITATION so she she loved %HESITATION love John Denver you know but it was a it was a lot of Beatles around our house all the time can you tell us a little bit about the camp that you guys volunteered at and the camp can planters that we ward planter corn planter or platter was a %HESITATION I think he was a Seneca Indian %HESITATION you know long ago and he actually did some negotiated with the %HESITATION with the federal government for land and things like that %HESITATION and this is in Allegheny National Forest so there were eight cabins up under a ring up above the valley on the hill a wonderful woman Annabel Bollinger %HESITATION started it because she had a son with disabilities Billy and my parents heard about it I don’t know how but Kathy started going one week summer just as beautiful spot in the woods with their in and a valley and %HESITATION big open field and there was a a mess hall and %HESITATION they have a pool a rec hall so can you go there and she just loved it and then I think sixty nine my sister Leanne which worked %HESITATION what normative volunteer we got paid twenty dollars a week so it was close to volunteer and it work I was eight weeks long basically work six days a week campers would come on Sunday income go home on Saturday so everyone had Saturday afternoon until Sunday morning off we would all just go out drinking somewhere and stay at each other’s houses and I worked there for four summers I was a counselor and there were eight cabins four cabins of females four cabins of males ages six to sixty all ranges of abilities and disabilities it was probably %HESITATION besides maybe be a father and watching my daughter get married it was and being a famous rock band well that’s a it was the best time of my life when everyone who worked there just loved it I you know they would let ending like that go on now the toilets were outhouses sinks you know we’re just cold water and you know they had a nurse and %HESITATION I actually %HESITATION I had to save a boy’s life he was joking that I did you know I didn’t know much about CPR but I’d started blowing into his logs and %HESITATION you know do you do you live I actually wrote a song about abuse for sorry ever wrote wow Michael Mikey laying a door for it’s so we have a program in there to be %HESITATION arts crafts and music class and sports and which was usually swimming pool big in ground pool must of it fifty fifty feet log it was it was massive and of course we’d have to do polar bear once a week so we get up in the fall at eight o’clock I can coach up at the pool and then like Thursday nights we have a show reach cabin would put out a little performance and you work at it during the week one of the staffers would be chief Cornplanter they put out the feathers and the line clock which sit around a big fire pit they had a little gas line right underneath the %HESITATION the fire pit and %HESITATION us spark and he’d come out it’s a %HESITATION can you welcome all the campers and say how a toilet to be fired if they were to the fire pit would be you know would light up and %HESITATION which said in saying you know camp songs the slow core plan %HESITATION light of mine I’m gonna let it shine and you know stuff like that but it’s where I first fell in love because they’re really cute girl counselors and %HESITATION I made better friends there that I didn’t you know in high school it was a fabulous I worked there for four summers and then they you know they couldn’t pay people twenty five dollars a week you know after nineteen eighty they just you know they couldn’t find people to work for that so finally closed the you know the building started falling down the cultures we get together we have we have reunions and we we make a pilgrimage out to the camp and walk around and tell stories and it was magical just magical there’s two things here for you it was the best time of your life and it was magical and and I think that perhaps even people who got to go there maybe and be amongst their own and there must have been like a freedom there to to the community that was created and then from the outside looking back you look at like that you know outhouses and cold water sinks there’s there’s such a dichotomy there too you know these this wasn’t that what is it called the four seasons or things like this is what was or wasn’t always in right right this is what was offered up but yet it in that disarray there it was actually such a such a gift and did the M. did the campers ever talk about how they felt being there I mean it must have been just being away from home you talked about some of the kids were you know naturally afraid to be away but did they ever talk about just having that freedom and have no relationships a maiden yeah you know they really felt that independence and you know they felt like they were you know kings and queens out in you know in this magical land in the forest it was a lot of happy a lot of saying in and play and you know an activity in and get a ride around it fresh air for days you know campfires and how can you how can you go wrong with that campfires and your plan at this time you are you at work where replenishments at this time yeah I mean I I brought my guitar you know I bring back who’s a guitar with me and you know and set the cabin and play until the other councils for tell me to shut up I never thought in a press the girls too you know so %HESITATION %HESITATION but I you know was really a banner saying it was until I was I was twenty three when the ten thousand maniacs started did Kathy influence your music and and it should and how well Kathy love saying she said all the time she loved it also you know there’s always music around our house my parents played records all the time so can’t you grew up with that too you know and and her other siblings play music records all the time and watching me play guitar you know going up to the church and C. and Dorothy Brooks pada piano indeed singing and dance you know Kathy had a wonderful life and and I enjoyed seeing her happy %HESITATION you know her happiness and and you understand as her smile was infectious we have a special light about it’s funny because even in a coming from a parent’s point of view and you know a lot of times we get that they’re angels or something like that and so at the beginning I think we rejected or we got defensive over some of those statements but there is definitely there is something and I wouldn’t say Liam’s an angel he definitely is human and has every emotion and the ten year old boy I have a ten year old boy but there is and I don’t know how to describe it it is infectious in a way that there’s a percentage of people that he comes in contact with that just just love him right away want to hug him they want to hang with him and that’s a comfort that as a parent that we have that there is built into society there for as much as we feel like society could change a lot of ways built into society as a percentage of people that I know will will help Liam if we weren’t there or would protect him and also befriend him any like some self healing he knows he he has friends and he’s confident that way too and the world needs that element that can walk into a room and just bring some joy with it and yeah you know you know we we need that because it’s not it’s not it’s just a natural %HESITATION doubts center for president I absolutely right absolutely %HESITATION I mean we we interviewed a gentleman whose father had down syndrome and just even talking to him you know the influence of that element that compassion that like what you described as far as Kathy just just that love you could feel it and and his son the way he talked about other people or even just the way we interacted with him from go it’s it’s so special and I fought that stereotype for so long but it is something that I think it’s I don’t I can’t I can’t describe it but there’s there’s always there’s been something about just his love and I think it is the unconditional with no ulterior motive and without expectation yep yep no alter motivated all I want is the love to be loved right and it’s such it’s so beautiful it is so I wish more of us could be like that right I wish I wish I was always like that yeah I think it took me awhile and then one time I was just observing the way as a human and my life how I’ll go how I feel about a situation or sometimes us second guess if I’m going to say something or to comfort or well how are they going to take this and %HESITATION right what do you think of me right how it %HESITATION what how’s this going to affect my relationship with them and you know you you can come into a room and lamb would feel if you were upset or mad and I’ll ask you and if you’re upset he just go over and now we started this new thing and I don’t know where he got the wording from that’ll take your hand and he’ll say it’s okay I’m here yeah I don’t know where you got that but %HESITATION so it’s just like strong you know and it’s it’s so it’s so beautiful and I I think people miss out on that and I think there’s so much the false perception of down syndrome just was never really shifted into the gifts you know it didn’t it it didn’t shift properly into the gaps in the beauty that is there and the way we are affected as a community and a lot of people miss out on that you know a lot of people really do would you tell us a little bit about the the post that Stephen found the one that he saw the concert and how that came about M. I mean your family your family is just like a bunch of advocates with ease can you tell us about that concert well we were played in St Petersburg at a %HESITATION in an auditorium I got tickets for my parents and all their friends so %HESITATION you know get VIP seating and Kathy was with them what one of our road crew guys wakes up on his tour bus or walks out and sees you know fifty you know seventy year old people walking by the thought right so anyway I I and I don’t know how to actually how it came about but I’m not I just said to our singer Natalie merchant instead could Kathy come up and sing a song with and she said yeah course because you know we were %HESITATION when we were starting out we go downstate my parents house all the boys slept on the floor it’s sweet bags that we shared a room with K. it was the experience for her but so she can’t they were friends so Kathy came up on stage and they sang a little bit of I wanna hold your hand by the Beatles and of course the crowd went nuts %HESITATION Yeller tears all over the place Kathy was static you know her her big green got bigger like the joker was like already and after the show room to read in the dressing room Kathy was there and I almost always go out and say hi to the crowd because I like talking to a woman stuck inside autographs and Kathy came out with me so there’s a lot of people get Kathy’s autograph and she thought that was pretty cool there it was it was pretty special and you were gone a lot for it during that time I guess Torrington and %HESITATION had that evolve your relationship with with Kathy well I certainly would I regret some of it %HESITATION but it was my parents decision to retire moved to Florida so that made it hard and I missed a lot of Christmases the first five years of by our marriage I was gone for three we work pretty much nonstop from eighty one to ninety one we worked really hard for those for that decade of years it’s a it’s all encompassing you know there’s so much travel in so much work and try to be creative and %HESITATION it just really just consumes your life it was enough to try to think of my wife so it was a you know my parents in Kathy in mice and Leanne were often just sort of in the back of my mind I didn’t you know you know I was in we I don’t know I work where I was I was in Vancouver subsequently had called me and said her mom was gonna die she cancer so we were lucky we had about a week off so the band flew home and I flew down to Florida so I could be there and I got see Kathy before she died I think my dad called and said can you come down and I said yeah and she had Alzheimer’s which he was born they said she lived to be twenty and you have to be fifty seven a lot of it thanks to advances in medicine you know she didn’t have the heart problems and %HESITATION is you know respiratory problems which I think was you know they’re they’re early causes of death so yes she had Alzheimer’s and %HESITATION she was lying in bed now walk into a room and I said hi Kathy and she smiled she recognized my voice you know and a big smile on her face and she really couldn’t talk but you know she uttered a few silence I guess that was that was good and I got to see %HESITATION thank you thank you for sharing that with us medical advances are changing so much in the lives of people with down syndrome we just did a interview with with %HESITATION doctor Bryan Scott co who is in Boston and it does so much research and he had said about fifty percent of people with down syndrome end up getting some kind of dementia or Alzheimer’s and then acting on them and they’re really a lot of study on that so that’s gonna be a big hurdle for for not only the down syndrome community I mean that’s something that we really need to do more research on you know think about you know where we were ten years ago where we are today with medicine where are we going to be in ten years now %HESITATION so I think there’s great hope as long as they get funded you know they need they need the money to do it and I’d certainly like to see guys like Jeff Bezos and %HESITATION step up and start forking out Sundays cash open with some of these things I mean there’s don’t get me started but %HESITATION so few halves most of it and %HESITATION you know they need to share it and you know just how fast they got this vaccine together or they’re going to get this vaccine together yeah kopen and it’s because so many people were dying absolutely and you know it can happen you know you need the inside edition in the motivation and that’s yeah and and the thing with down syndrome’s I don’t know how many what’s the population do you know of %HESITATION of America how many people are without syndrome I don’t know the population I’ve always heard I’ve always had one at it every seven or eight hundred births is it is someone with down syndrome so you know they’re not obviously that the top of the list without %HESITATION advocates like you and my parents and you know every I think almost every parent yeah I beat it I I would hope so you can’t be can become if they have the ability in time and and %HESITATION desire to be an advocate you just brought up so much because first of all when you’re talking about the medical and that Kathy was only supposed to live till twenty and she didn’t have these %HESITATION pre existing conditions like with your heart and respiratory now even children who are born with a heart respiratory medical advances has kind of eliminated those as you know yeah I liked her’s scent of kids born with down syndrome have a look a little hole in their heart yeah Kathy did and that wealth %HESITATION what did they do did the did you have surgery or did it just kind of take care of itself medication you know and %HESITATION she had surgeries are I just try to make her eyes better you know she had to wear pretty thick glasses but %HESITATION you know my parents didn’t have a lot of money and you know back then it really wasn’t insurance you know you went to the doctor you paid when you left but you know they found the money to get hurt you know surgery got our eyes to help or so she could read which helped her quality of life obviously I you know of a good insurance for everybody would go a long way yes it went with you yeah you know and and you talk about education that is still you you I mean your parents made these leaps and bounds before it became you know the individuals with disabilities Education Act before that ever existed your parents were were pushing for that we’re still fighting for that we’re still experiencing pushback on educating our son which is but you know you fight and and you do see a lot in the community that you know they’re told we can’t educate your child and so they say okay we’re they’re told this is all that they’re able to do and they say oh because it’s coming from people who you should be able to trust you know so that we can regeneration really you know set up for what movements happen now happening now they set up for the moment and and it’s still it’s still is something that more people need to hear more people need to see that your first that the still exist and secondly for the amount that the still exists look at how how far and and just the leaps and bounds that have been made Mike my wife’s a %HESITATION teacher she teaches third fourth grade %HESITATION and she’s fabulous her kids love her but they they’ll they’ll get some special needs are some kids with learning disabilities and they struggle to find you know to find an an aid that could come in and give them a little extra special time you know to help them out and you know that’s just insane who’s in charge seems to come down to money I think but there’s so much money in the system and there’s so much money there it’s not it’s just needs loads of money there’s no there’s always enough money just not a priority it’s not that that idea that %HESITATION was it the times this new sort of study of economics that you don’t have to borrow from the defense department to pay for education there’s plenty of money you know and people disability are real this are the silent minority yeah they are %HESITATION you know they’re they’re the first to get cut elastic it brought back on I think that’s the part that definitely does still need to change it because I I believe that because that is the societal approach than it does affect the way the perception is changed and even just that and in the family and the families that have someone when they receive that diagnosis that that that diagnosis also carries the weight of the the societal perception and %HESITATION and and then we miss out on all this goodness all this good stuff right how far a even Kathy generation how how much more could they have shown us that they were given supports that are even available today you know like ten because the thing she did living independently having a job bank once she had not burning down the house yeah and I mean that like now our daughter would just shot out the house may go ahead as we had in the oven with the salmon and I said run yeah I mean I I wasn’t quite many things they just take care of this right just go to another one go go go you can read the computer yes I was so afraid of that flame that came out and so even just that they get you absolutely is the fact that look at everything that she accomplished in in relationships and also personally as just as a human with her goals and having a job and being an artist and an E. you know what what more opportunities would have been there for her we’ve got several artwork on the walls she %HESITATION she did some very abstract things %HESITATION that really beautiful you know everyone everyone has words everyone you know I just find it hard that everyone is treated like that I think sharing her story and your story and your family as an and an advocate that I would say that that hopefully it lights a fire of advocacy and families today that your your parents did that before was a thing and they did it because you know that was what they had to do and wanted to do and they made a change and they they put that foundation down for us that we need to continue to follow in those footsteps and continue to make a change they really did just a passive forward yeah %HESITATION I’m very proud of him for doing that and they were either one of them was college educated but they were very smart people because you know back then that they really tell you critical thinking in high school %HESITATION you know my dad did twenty two years in the military and you know they were bright passionate compassionate friendly people I’m I’m I’m like a but I’m special because that Kathy it out or there aren’t very many people out there that have that I mean you don’t want to see a child born with learning or physical disabilities but it happens and I’m glad it happened to me you know our podcast is called if we knew then you know Steven and I always sit always tell parents if we knew then that we wouldn’t have worried so much your stress so hard or maybe will pay as much attention to things that were said but do you have and if we knew then a statement that you’d like to share if I knew then I would just throw that their kickball I may assist her we love your stories anything any story because I think that it’s you know parents parents are listening honestly there they they do have they have such concerns when they get a diagnosis and one of one of them is about about having a sibling and I think that is my story your yeah what your life is going to be in your story your stories are just that you know it’s gonna be it’s gonna be and and I love your stories and you have you tell you tell them what such joy %HESITATION that how could how could having a sibling with down syndrome ever be thought to be a negative because you clearly have received so many guests from that experience I had a friend who %HESITATION she was very very short stature we kind of look like John Denver kind of Kathy love John Denver and if I knew that I probably would have done this Kathy you have to be judged Denver’s how did how did she respond for you kids gave me a hug you know I think I think she may have a pot holder %HESITATION %HESITATION as well why would you take that back so you know you know I I didn’t like cheating on her you know and and I always liked liked it when she wanted and yet I suppose when I was you know when I was really young I didn’t know the difference %HESITATION still learning that and %HESITATION you know I I feel proud about beat your hearts but you know then once I figured it out it didn’t matter just a game anyways but oh god she told everyone should who checked you know I would you know I wouldn’t change anything you know maybe I wish I could have seen a lot more before she died %HESITATION %HESITATION you know she led a great life is there anything else that you’d like to share about Kathy any memories or thoughts or anything you’d like to leave leave the audience with you know like I said I said it %HESITATION I’m special I’m a special person because I had in my life you know blessed and lucky thank you stay on you’re welcome I enjoyed this very much and so did we.
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