Accessibility

Transcript for January 2014 Brown Bag

>> Okay great, well, thank you guys for taking your lunch break and time to come here to kind of talk a little bit about the topic. So it's growing up with a brother with Down's Syndrome. The reason why I wanted to speak on this is to share my experiences with growing up with a brother with Down's syndrome and what those have been. I noticed that a lot of times with both professional and personal experiences, a lot of times that stays within, at least the field. So you might here as you're working, you might here in a left hand way or sibling or whatever. A lot of times that kind of stays within, you know, in that community. But not as often does that story or that experience or whatever that is can get out into the general public unless it's an experience just while you're out or whatever. So with keeping with my experiences in mind so what I'm interested in doing, or what I've been working on is writing a book. And being able to express those experiences and share the stories and just be able to have the opportunity to share one person's perspective and the families prospective with the community. So the book is going to be really just for anybody that comes across it. Anybody that picks it up and crosses paths with this book. So it's not necessarily for, you know, the field or this or that but I want it to be more of a kind of [inaudible] just a [inaudible]. So I thought today maybe -- or Tom, could you switch to the next one? It would be -- go to the -- yeah.

back to top

 

It's just the agenda for today starting talking a little bit about my background and what my book, both professional and personal experiences. And then again talking a little bit more about the book and why I want to be here. And then I wanted to get your ideas. I really wanted to make this a definitely kind of an open group so that way I would love your feedback and let you guys see why I wanted to have a book like that. And then so just experiences, first experiences as a family member, both myself and [inaudible] and then also talk a lot about Michael and just kind of what his experience, who he is and what those experiences are. And then kind of talk about him both within those [inaudible] and then throughout that I'll talk about specific family cultural perspective. And also -- well, in fact that within the story of Michael and talking about him but definitely running to kind of [inaudible] and then again, family outcome. So to start off I wanted to, I guess, talk a little bit about my background and with that my professional -- just my profession is -- from a very young age I realized that being rock star was not going to happen. You know, no Tiffany, those of you guys that know Tiffany, I realized that I was not going to be her back-up singer. I decided that I wanted to be a special education teacher. You know, Michael, through his educational career and I was seeing that those -- experiencing him learning all these different skills.

back to top

 

And so I wanted to be a teacher. I wanted for a while and be someone that was able to teach someone just like my brother. So again, I got my undergraduate at the University of Illinois, actually. And so I wanted to be a teacher and to do that I actually ended up teaching at the one my brother went to. [Inaudible] and so I ended up teaching there and teaching here in California. That was another thing, was I was staying late, I was [inaudible] and then only being able to work with those kids for six hours a day. And so I want to say that a lot of that was [inaudible] I wasn't able to kind of -- I was only able to kind of catch that education [inaudible]. And so with that I found this program as soon as I got to San Diego and that was Lisa and Karen and Chuck and I fell in love with this program immediately and so -- and then Chuck was starting this cognitive disabilities program. Happened to -- was lucky enough to be a part of that and it kind of really shaped my experience in that community and vocational setting. So [inaudible] together.

back to top

 

I was noticing how with those experiences -- I was noticing with those experiences I was still missing that home component. So I still wanted to tie together that, not only the education that I've known, [inaudible] and did that and then that vocational piece, but I wanted to find that home and get those other parent prospectives and their experience with what's going on in the home. So in my professional background and then my personal background, of course, has a lot to do with my goal. So I'm one of five. Mike is the youngest. It was just him and I in the home, our other siblings are [inaudible] so within the family unit it was just my mom and dad, my brother and myself the majority of the time. So my dad was a -- he was the breadwinner. He went to work every day and my Mom had the ability to stay home and raise us. And a lot of times that was to support Michael. Really, a lot of times that's what it came down to. But it was definitely a dynamic family unit so when I talk a little bit more about Mike and kind of talk about the role that the family played and whether it was on purpose or an accident, what that looks like. It was definitely a family responsibility for that. And then also growing up in the Midwest I think that was an interesting point to note because I've seen services change between the Midwest [inaudible] California and also I've been in Texas for a little bit and kind of see what the experience with that.

back to top

 

So growing up within that Midwestern style. So that's my personal background but I think definitely wanting to know a little bit more about Michael and how that shaped me and my decisions that I've got to right here. So if you would go ahead to the next one. So the reason, the purpose of the [inaudible] is about to kind of take these experiences and shape them into a book. And so be able to -- I [inaudible] whether you have a disability yourself, maybe you have a sibling, an aunt or uncle and maybe your parents may be with a disability, what ever that is. You all have your own personal experiences with it. And often that really stays within yourself, your family or within that [inaudible] community. So with this book I really want to be able to share and help and adapt. So today, the purpose of this is, I really want to -- I've begun to write this and but I really want to know what do -- what would the leaders want to see out of the book? So what -- if you picked up this book what would you want to get out of that? Would you want to hear stories? Would you want to capture how those stories have been changed somebody's life and then kind of tell what those outcomes followed? And so as we talk about this, what would you want to know from a book like this? But I also invite you to ask any questions. So maybe you have been out in the field and, you know, care to share the story.

back to top

 

You've got the questions but you know, maybe it's not appropriate to ask at that -- you know, you've got those questions and now would be the time to help me and open and a great time to ask those questions you may have that you might feel uncomfortable. No question is too personal too. So the [inaudible] difficult questions and as you're reading a book, you know, I'm sure that there are things that you would want to know. What did just happen? And so, you know, please feel free to jump in anytime to stop me. So if you would switch to the next slide. So I wanted to give you a synopsis. So as I've been writing and, you know, finding the purpose of my story, this is really it and if I'm [inaudible] the story is being written in a personal perspective about growing up with a brother with Down's syndrome. The book is a portrayal of both family experience through the [inaudible] sharing stories of childhood and how the relationship has affected her. The [inaudible] describe the process and what the family understands of the social, emotional and cultural aspect of the disability in terms of it impacting each family member. [Inaudible].

back to top

 

So that I'm going to share with you guys with the remainder of the time is kind of what the experiences have been and what I've already some of the writing that I've done, this is all that's going to be in this book. So as I'm talking about this, you know, if there is more detail that you think that you would like to know feel free to ask. And definitely help [inaudible] and I hope that you guys can think of this as a way that you guys can help shape this book itself. So move on to the next slide. The first experiences as a family member. I recently -- as I was getting ready for this, [inaudible] heard the story a million times and asked the questions. We're a very open family. But, you know, I'm pretty open as I go on, but I asked my mom to [inaudible] what the experience was like when they first found out. And what were the experiences of hearing the doctor say and [inaudible] what was that like. When I asked her she -- I asked specifically about the stage because I never really heard or cared about this stage. You know, you [inaudible] class and learned about the different models and you know, of acceptance. I can actually remember the power point that Chuck had put together. You know, the different models and things.

back to top

 

So I was actually keeping that in mind, asking, you know, what was the stages like for you and what was the experience. And so she said she -- it was a -- it was a typical pregnancy for her and so they [inaudible] it was 1984, you know, you don't automatically do that talking and so she didn't know. They hadn't known so she actually had him, was able to hold him, feed him and then they took him away to do all the testing things and it wasn't until the next morning that the doctor came in and she knew -- it was the same doctor that delivered me and so they had a relationship and he didn't come in to see her, he just came in and wrote some notes and left and she thought -- she knew from that moment that something was wrong. So later on another doctor came in and she said she remembers him putting his head in his hand and just saying, you know you have a baby with Down's syndrome. And kind of talking about what that's like and both my parents at that point in time their main concern was each other. So it was a wanting to -- you know, that concern for the other person.

back to top

 

Once the doctor left, of course they had a chance because to go through that, there was a lot of crying, a lot of, you know, what does this mean and they said they just really leaned on each other. They went to a genetic counselor and things like that. And met with some people [inaudible] things and they said, from that moment it was just something that they were going to move forward. I had asked, you know, did the doctor talk at all about, you know, what the expectancy was? You know, [inaudible] institutions wasn't [inaudible] so what were those conversations that she said she had. And the doctor had a son with Down's syndrome. And so was able to talk about those positive experiences. And she said, on hearing that it was -- it gave her a kind of a whole new perspective. So with that, she took Mike home from the hospital and started on the way [inaudible] particularly difficult day. He was also born with two holes in his heart which is not uncommon. And so he wasn't able to have surgery for about the next nine months. So they said, you know, he may or not live, he may or not walk, talk. So she was having a particularly bad day so my dad went back in, he's not much for words, he's not one to really open up but he wrote a column about Mike and from that really a true depiction which -- move to the next slide, is that column and ever since [inaudible] it hangs still in my brother's room and they, you know, they look at it all the time. It is a symbol of Mike. So I'll let you guys read it.

back to top

 

>> Is this how [inaudible]

 

>> So once my mom adapted she -- they've got that -- they knew that everything was going to be okay. And so it's because they're accepting.

 

>> And you said that it's still hanging in there.

 

>> Except that he doesn't even live there anymore, which I'll get to. But it's still hanging in his room. So I actually -- I had asked at one point to have it and I was lucky to get a copy. So that when -- and I wasn't sure the comfort level of my parents, you know, being able to -- if they were okay with me sharing and so I had asked and [inaudible] they were really open. So I guess something so private can hold together and they were excited that the book is going to be able to share.

 

>> I have a question for you. Had your mom and dad, had they met other Down's syndrome children prior to Mike, you know, and what was their perception of [inaudible]?

 

>> They hadn't. Or they didn't have like a friend or a personal relationship to anybody with the disability. The only experience was that my dad had lost a son years ago and so he had already been through an experience where he had had a child that had some genetics that were, I guess, after it was delivered it didn't make it. So [inaudible] going back to the concern of each other. It was my Mom and [inaudible] after myself. And both of them just concerned about each other. But other than [inaudible] there is no other within the family or other experiences. This really shaped all of our lives. My first memory was when he was nine months, the Ronald McDonald Foundation was able to help with the surgery. And so I got to see the Ronald McDonald house and all I really remember is they had the coolest, the coolest playground out in back. And so I -- there's a picture of me in the room with Michael and the tubes and all of that. And I just remember [inaudible] what the playground looked like. So that was kind of my first, you know, experience with Michael as well. So kind of moving forward, that was kind of that, you know, that crisis, those first experiences. Michael -- he just proves the doctor wrong. He was able not to walk but run as you will see later on. He has nothing but energy in the height of movement and his independence and he definitely proved those doctors wrong.

back to top

 

>> I have a question.

 

>> Yeah.

 

>> How many years ago difference are you and Michael?

 

>> We're 18 months apart. He's just 18 months younger than I am. So moving forward I wanted to talk a little bit about Michael. I have some pictures so at least you can just see from when he was younger, I'll just pass them all around. You guys can do that. Sorry to note that our [inaudible] apologize. But so if I could describe Mike. If you wouldn't mind moving to the next one. If I could describe Mike in three words it would be determined, loving and stubborn. More than I could ever express to you that last one, stubborn. But again, he's definitely my hero and just he has grown into such a wonderful [inaudible]. He's almost 30 now, 29. And it's just been so great to kind of see him grow up. So just to kind of start with his ability. His situation is, I guess, a little unusual. He's more with the moderate to severe range as far as intellectual disability goes. He's got quite a few [inaudible] skills in that he definitely is quite independent and he is definitely that his mo is for his own independence and that he's always wanting to do it himself. So he's able to set up his own DVD players, fix his own TV, do all that stuff together but if you ask him to out of context to go into the kitchen and get you a fork he might come out with a pair of scissors. So his -- definitely the ability level, he's always going to continue to need 24 hour care, of course, for safety and for his own personal care. But he is able to shave, you know, get himself to work. He's able to do all sorts of things but definitely quite a few other skills. To start off with a story, I guess, about his ability is -- I was -- him and I growing up shared a -- there's a couple of favorite movies that we both have and he -- I'm going off to college and I took some of those movies and I packed them into my college bag. As we all do when we go to college, so I packed them all in and I thought I hid them well and so I lived with him a long time to know that you always double check for those things that you absolutely want. So I was just getting ready to go, I looked and they were missing. I'll find them. So I go to talk to him and he was like, I don't know, I don't know what happened to them. And then again you ask him, oh, you know, where did this movie go? And again [inaudible] responding so you don't know if he knows exactly what you're talking about or you don't know. And so of course I hunted around and I found it. So then I repacked it, thinking I did a really great job this time, and okay, I know he's not going to be able to find this. And so, you know, I said goodbye to friends and family whatever so I looked just before loading it into the car and it was there. So okay, great. I have it, I outsmarted him. I was the smart one in the family, I was going to college. I get to college, a week later I go to pull out the movie and put it in, he'd switched the movies.

back to top

 

>> Laughter. So I sense the ability he is never one to be underestimated. But as far as level of care, you know, that's the way it's always going to be that 24 hour care. So [inaudible] we have a -- he had a definitely unique educational experience when -- if you think back to services and how do you find out? You've got this diagnoses right? And you know, you find out that he's got Down's syndrome and now what? The hospital that -- and the doctors gave him and gave my parents some great resources and said okay, you know, when this is really where you need to start. So my parents did and they -- three months after he was born he started to go to therapy. So he was in a zero to three program, a three to five program and then his education was the five to 21 at that when it was still 21 when he was going through school. So he started getting services when he was three and again when I was talking to Mom I asked what was it like and just trying to get some refreshers for today. And she was still able to say, well okay, when he was three months on Tuesdays and Thursdays between this time and this time I took him here. So if you think, that was 30 years ago and the parent is still able to -- I mean that shows the impact, you know, that this can have on a family. And so it's, you know, when you think about when we are working with families, how much of an impact that really makes from day one. But so with his -- within that education realm he [inaudible] all sorts of therapies and services and such.

back to top

 

To the point that the sibling always comes with to those things. Too late though. It was great. A lot of time you have your physical therapy, you've got your occupational and all that. And a lot of times, as a four year old we were walking into a room with a bunch of men. So that free for all is -- you know, it's like a little gymnasium. So a lot of my memories of going with Michael to the therapies are just, you know, it's like a gym, it's a place where you can go and play and do gymnastics without really knowing the impact it was having, you know, on the family. And how much time that really takes to do that. I was watching some footage which I'll show in a minute. And my mom had just gotten home from some sign language classes and some behavioral classes and things. It was 9:30 so she would do her day in there so from 9:30 she would go to this class and come home and be able to put her son to bed in order to start the next day. So it's not just the children, that was [inaudible] going to the therapy.

back to top

 

So his education, of course, played a really large role within our entire family. That also became the foundation of where my family then found out about further services. But that's always a big question, well, how did you know what to do and where to go and who are the resources within the community? It was within this educational around that between the zero to three and said, okay, well, you have a -- here's some places for recreation that he can get services and that he can have these experiences. He can meet peers and things like that. Within sibling groups and things like that was through the school that they said okay, well, we can do this and that. He went to [inaudible] education that five to 21, he went to -- we have a cooperative or actually [inaudible] school, I don't know if that's an issue, but it is a school in -- outside Chicago and it was in the suburbs and it's a co-op so it was built as just where for kids that weren't able to be served at that time in their home school. And then so get kids to come together to have alternative [inaudible] an alternative school. So this one, this is actually [inaudible] so it was -- it had different therapies, it had of course you know, your functional academic, it had vocations, it had vocational program and things like that. A number of social workers and psychologists and things that were all on staff and all on teams to help support him. Moving into the communication and behavior. This was a big reason for the need for his specific education program. I'm going to play, I'm going to play the first clip of the communication so you can just kind of see. [Inaudible] to get the sound so you can hear some of it and so you can kind of see what Michael or [inaudible]. You can see Michael in action. This was when we were -- he was probably about three or four and this was a neighbor of ours.

back to top

 

[ Background noise and children playing ]

 

There is a lot of scenes in that clip there. One, you got to see his -- you know, the social. He always wanted to be a part of the group. He always said, hi friend. Hi, good, how are you? Good for you. Come on in.

 

[ Background noise ]

 

So it's in that -- definitely the social part. Always wanted to be -- she'd move over and he'd kind of move over next to her. Story of my life. Any time I had friends over he was always the center of attention. Always wanted to be -- which again when I'll talk a little bit more about sibling stuff. But was always right there and the imitation skills. Like, you know, he watched her do it and then he did it. And then you heard that communication that tell when he talks today about [inaudible] what you hear. So we try -- we started with doing sign language. My parents did all that and the classes and all of that. We just signed and his was imitation and he got great imitation skills and then we were able to teach him how to sign. And so he still, to this day, there is some [inaudible] being able to those items that he really wants he'll sign for if he can't get it himself. Hamburger. He's a big one. And so we also tried a bunch of communication places. So back then [inaudible] Big Mac and all those that came in the 1980's.

back to top

 

And then there was [inaudible] what's the big one, the [inaudible]? Well, let me tell you. We had board maker and [inaudible] all over our house. So you know, for [inaudible] for light, for whatever it was. I mean we would find them in our cereal. And they would be everywhere. We found singles all over our house. So, you know, we had [inaudible] people come over or you know, parents entertaining or I had friends over and you know, [inaudible] well, why do you have a picture on the light? Right above the light and you know, [inaudible] so it did make interesting at times and we continued to try different communication systems and he still wants to do things his way which [inaudible] himself. So you [inaudible] take the dog and go. You've got a little bit of behavior where she came in and he wanted the dog so he just pushed her away. So a lot of that was -- a lot of his communication was not received very well. Going into that next one. Behavior and [inaudible] is the best way to kind of show you what that looks like.

back to top

 

[ Background noise ]

 

So going to get a haircut. Is, was, one of the most interesting experiences and something that a lot of us take for granted. It was a big deal at our house. The whole family went. Sometimes we brought whether it was restaurant workers or my friends or whoever it was. Getting a haircut was a big deal and was a big production. The whole family went.

 

[ Background noise ]

 

back to top

[Inaudible] piece of it and some other things as you [inaudible] as soon as my dad let him go. You can actually start running. So I'll tell you a little bit about the environment at home. Everything either had a lock, an alarm or was nailed shut. So windows. Any window on the second floor was locked. Was nailed shut so it was -- our air conditioning and heating worked. Growing up in Chicago [inaudible]. Because opening windows is not an option. So everything was nailed shut. We had hooks and lock on every door at least -- I mean I can think off the top of my head right now just four different locks and one [inaudible] door with an alarm setting on top. So, you know, you have friends, you're 10, you have friends over and it was, you know, just to even go outside was, you know, an actual production.

back to top

 

>> [Inaudible] especially if he was at the house, okay, lock all the doors or [inaudible]

 

>> That's a good question. I don't know what the actual -- if there was being [inaudible] like okay, first you, you know, I remember being like, nope. You can't go out because [inaudible] or whatever it was. But there were many times where Mike either was able to Get a chair and climb up and let himself out. So Mike was well known in the community. We lived in two different places growing up. One with [inaudible] growing up did not know -- I didn't really notice the whole, you know, Mike was any different than anybody. You just -- it's your little brother, you know. All siblings have issues with their little brother right? So, you know, I didn't really think much of it. And sometimes he'd get out and you would just have to go find him. But everybody really knew who he was and it wasn't really an issue. When we moved to [inaudible] to that second location, things were a little different. People didn't know him.

back to top

 

The community was not familiar on Michael and so there were times that he would get out and maybe we didn't do our checks right or he was able to climb up and let himself out. It was a lot scarier. It was, you know, I would get on my bike and go search for him and my dad would get into the car and he -- sometimes would be brought home in the back seat of a police car. There were some community members that were not as friendly. One time he went in an a woman was taking a nap and he let himself in her house and she -- you know, he's very loving, he came over and was making sure she was all right or waking up and so she woke up to this, you know, 12 year old kid with Down's syndrome lurking, chasing her. So my first experience, at least as far as him escaping, was we had just moved into this new town, I hadn't met any friends, it was the summer time and I hadn't the opportunity to go to school and meet everybody yet. Kids, this particular time he had gotten out of the house and I had -- I was the one that had found him and I had heard some cartoons on so I figured maybe he'd be over there. And I walk in and he is sitting there with a bag of potato chips just watching the TV and there is a boy, who I came to find out, was a year older than me and it was neat. And as we saw, with my dad, I was not able to go and just pick him up, put him over my shoulder and bring him home.

back to top

 

We didn't have cell phones at that day. You know, they're out looking for him so I had to sit with him until my parents were able to come and find us. And me and Michael -- you know, that's how he started school. Was the, you know, the girl whose brother broke into the house and grabbed a snack and, you know, that girl and [inaudible]. So now his behavior a lot of times had those [inaudible] but also as a parent, you know, as well, you know, that child being not allowed in our neighbors, I mean have to knock on the door and the same thing. Just email, we had a phone, these are some of the things that you might see or hear. As well as, you've heard a little bit of that communication where he isn't necessarily able to make those with words. So, you know, if he is having a hard time or he is not able to get something that he wants, a lot of times the [inaudible] can start yelling or making sounds. Or walking by, if you're walking your dog and you hear that coming from the house, a lot of times it can cause some questions.

back to top

 

>> It seems like a lot of those experiences are pretty stressful, you know, for you and for your parents and family. How did you, as a family, imagine that and did it seem just normal or did it seem like stressful? How did you perceive that?

 

>> That's a good question, good question. I didn't know it at the time but with school [inaudible] at school, there was a siblings group that was there where you could -- where siblings were able to go and it was a very small group. I think there was only seven or eight of us there for many years. And I thought I was just going -- Morgan, the girl that you saw giving the haircut, she came with me so I thought it was just somewhere we could go and have [inaudible] you know, you're [inaudible] you just go and talk about you. And I thought, this is great. And so that's what we did probably [inaudible] and I can sit with for a couple years. I'm sure there are [inaudible] or something. So that was my help. I know my parents, there were a lot of therapies. There were, again, through the parent groups and talking a little bit about community. There are definitely, with what my parents found, a very large disability community and it was large but it was very small.

back to top

 

And so they were able to join a parent group through, you know, teachers and just through family, that played a really big role. We always had family over and with everything always happened at our house. One, because a lot of times we weren't able to bring him to other places because they -- you know, if he got away for just five -- if he didn't have a pair of eyes on him for three minutes, he might be upstairs climbing out of their window. So a lot of times that stuff happened at our house because we were able to prepare for it a little bit better. But yeah, family dynamic was really important as well. So if [inaudible] had a major impact. But often within that community of support, it's just showing how big that is, we have family in New York so we were every year we drove because we couldn't take Mike on an airplane. So we drove every year for either Thanksgiving or Christmas. And so one year, we [inaudible] childproof locks and you know, so he wouldn't roll down the window and at that time he would let himself out.

back to top

 

And so this particular time we didn't have the window locks on and [inaudible] gas station and so either the window goes down and he puts his arm out the window and lock the door and [inaudible] gas station [inaudible]. The third time this happened and so he runs over to a man that's pumping gas and, you know, in Ohio and you know, my parents are like, I'm sorry and he was like oh, don't worry I know Mike. I actually learned -- I worked with him in a recreational setting. And so it just shows how far, you know, how small it can be but it really is a large [inaudible]. But going into that recreation, that was a main key. Mike is definitely very active and, you know, the climbing and movement and all that, that did play a major role [Inaudible] which was a special recreation association. Again, more of a [inaudible] setting [inaudible] between the different towns. They were able to come up with a co-op that was just for people with disabilities. And so he participated in Saturday programs and all of that. And so through that, that was also another way that my parents met other parents and were able to kind of share the similar experiences. Vocation.

back to top

 

Of course this is a big piece of it. Especially why were all here, right? So it was through his educational career that really gave [inaudible] that vocation and [inaudible] we're talking [inaudible] in 1990's is the workshop was a shelter workshop was, you know, looked at -- they had been [inaudible] within the new school and so passed that. He did a lot of kind of free will training within schools and community training and then two years after -- for two years after he graduated he did the -- he did a shelter workshop where, for him, he was with his friends, he got a paycheck. It didn't matter if the paycheck was $1000.00 or $10.00, it was still something with his name that he knew that he got to go in and buy a video or DVD or whatever it was. So, but that of course, not [inaudible] he did for the next 30 years. He is now living in [inaudible] which is a residential. Okay, no, yeah, it's a large residential setting and there he has found his niche. He's always been very active and loves to perform and he is definitely kind of the actor and likes anything to do with art. And so he -- he always loved to color growing up and that was a way that he could focus and the only time he would sit still for more than five minutes.

back to top

 

And so he could kind of run with that and so he now, his work is, he goes and he paints in addition to -- he's in a dance group and goes to perform and does all these [inaudible] things. But now he -- his job is, he paints and then he gets to sell his paintings and so every year they do a -- something with the Art Institute of Chicago where they close it down and then they do a auction. So people are -- that are in the program are able to go and auction off their painting at the Art Institute. Which is a really good deal. So last -- I think the first time he sold a painting for 400 and [inaudible] so it's so he met [inaudible] he's [inaudible] big deal. Not for Packer fans through but we're good. And so he got his picture taken with Ditka, has met Lovie Smith was there. He met Lovie Smith. So it is a big deal, big signing thing. In one of the pictures is of [inaudible] one of my dad with -- had an opportunity to go to that one. So that is something that he does now. Because that is what he does, that's his work. And so he has found his niche, he's got what he wants to do and so that's the agenda for a patient. All of these things that happened led up to that. So that was [inaudible].

back to top

 

If you would jump to the slide. So the rest is -- I could talk quite a bit about the family and community perspective. Because in the other, just to point out from a cultural perspective, that I wanted to share happened recently. I was with him the last year and a half actually because his medicine and growing up, things always happen at our house. Friends always came over. It was always -- I didn't really notice a difference that nobody -- that other people weren't having the same experiences and, you know, it's just too bad that Mike pushes you out of the way if we're playing a game, it just -- it happens right? So there was a girl who I had -- a friend of mine that we grew up together, friends from Stuart High, that has been around Mike all of our lives. And she's still a best friend of mine. She was in my wedding, I was in her wedding. So a really close -- our parents are really good friends. So she is Indian and her -- she had a big Indian wedding. A very -- I guess, authentic Indian wedding and so my parents are now divorced, they got divorced after I became an adult. But they -- she had invited both of my parents.

back to top

 

That was not going to happen so my mom said, okay, well, you know, I'll bring Mike. He's part of our family, you've known him for like 25 years and that will be her plus one. Thinking it's no big deal, it's --of course I wouldn't say do you want to have Mike there? But it turned out that they -- it wasn't so much from the family but they were bringing family in from India and it was, again, a very large formal affair. They felt that it just would not be accepted to have him there. So something that, you know, being a little bit of a risk, but something that a person -- he is almost a brother to her, they are so close. But you know, the parents looked at it from the prospective of, you know, culture issues whether they could accept him. They thought, as -- no children and so they thought of him in that classification. So culturally that kind of -- one of the experiences that I've had of late that really opened my eyes because from somewhat what I've seen, there hasn't been too much of a discrimination with him.

back to top

 

And, you know, every once in a while we've go people that are out in public that -- you know, how many [inaudible] are rude or whatever, but in most cases they are being definitely acceptant. But culturally that was just one of the [inaudible] that I saw there. But typically within the community and within that cultural, it's definitely been very [inaudible]. So if he [inaudible] outcomes, now is the time to talk about how life experiences have shaped me and why. Because I wouldn't be here if it wasn't for him. And of course my mom works now that Mike has moved away. She was -- now that she is working she works as an aid in the special education program. And then my dad does [inaudible] he works in. He's more of a financial guy so he does all the fundraising and things for [inaudible] but he's definitely a big component of that. So without him, and it's interesting to see that the outcomes, none of us would probably be doing what we're doing if it wasn't for Mike.

back to top

 

In addition to looking at some for the therapy that [inaudible] things like that and [inaudible] on the way, I know Mike has shaped all of those people lives in doing [inaudible]. I have a friend right now that is a special education teacher because of Michael. So it's just interesting how one person can shape so many different people, people's lives. So I definitely want -- I know we only have a couple more minutes but I wanted to come open [inaudible] what I can share with you today is what's going to be -- either it's in the book or is going to be in the book.

back to top

 

>> [Inaudible]

 

>> Okay, well I definitely -- I talk a whole lot but I want to definitely -- but this is what's going to be in there but why -- what would you -- what other questions do you have? What's missing? What would you like to see more of?

 

>> I have a question.

 

>> Yeah.

 

>> Now what is your audience? Like who is your audience? Is it just everybody or is it really -- it leans toward people with, you know, maybe [inaudible] if it's going to be -- do you want it to be informative? Is it -- like what do you want from it?

 

>> It is going to be for anybody that comes across this book. So I don't want to limit it to just directed to siblings. I want to open it up to somebody that may have never -- haven't had a relationship with [inaudible] intellectual disability, to be, you know, a family member that, you know, who [inaudible] effects that it can have. And I want it to be a positive where you can still have these crazy experiences and things like, you know, that shape them for the better.

 

>> So it just wouldn't be like counselors and social workers are going to be [inaudible]?

 

>> Yeah. And the -- where I kind of -- where this is all stemming from -- actually Chuck, you're responsible because [inaudible] itself is we had to do a synopsis in a book and so -- you guys are really too young for it, like those [inaudible] he wrote a biography with [inaudible] with the forward and that -- with that I was really inspired to see, okay, well, to have a biography about this but then -- autobiography, I suppose. But I wanted to do something very [inaudible] perspective. And so anybody that comes in contact with that it could be someone who had never had any experience ever. Or someone that totally gets it and reads it and I've had, you know, there's [inaudible] in there too. And so being able to -- so I wanted it to be very open.

back to top

 

>> I'm sorry, I feel like you have this really beautiful acceptance for your brother just from hearing this little, you know, your stories. Did you ever go [inaudible] resentment?

 

>> Oh, oh my gosh.

 

>> Things like that? Is that going to be in your book too? If you or someone, if I were someone that, you know, had a sibling with a disability I suppose that could mean that would happen. I want to see this, you know, and you want to hear the positive things, I also want to hear [inaudible] know that have resentment, like why does he get all this attention and therapy? So I really thought that means something to share.

 

>> Great. That's really helpful. I think a lot of that comes from the fact that I was always -- you know, it was like, Mom, get Mike. Like it's my time to have friends. It's you know, can't I have five minutes to hang out by myself with my friends? And he was always in the middle. I think that's a lot of where [inaudible]

back to top

 

>> [Inaudible] friends, were you embarrassed? That sounds weird to say but were you embarrassed to bring friends over to a different house and they see you have picture icons everywhere and locked windows and things like that. Was that ever embarrassing?

 

>> Yeah, of course. And it wasn't until I had moved to that second town where it was how [inaudible] before it was a kind of acceptance. And it's [inaudible] it was just, you know, it was very -- that part -- the teaching, no, this is how you do it. Which typically doesn't happen from a five year old. But you know, once they got to the next one, or boys, when boys start fooling around, [inaudible] used to be a test that, you know, if you bring somebody over and if they can't get along with Michael then it doesn't work out. So you know, that's kind of what turned out [inaudible] but it was, I still got friends. My maid of honor still [inaudible] Mike and we've been friends since second grade. [Inaudible] one quick story, is we were all home from college for the weekend or whatever break or something, undergrad.

 

back to top

And she went to Iowa and I went to Illinois and so one of her good friends from Iowa was with them too and we were all staying. So we were all just there for the weekend [inaudible] and we forgot to tell her so we all stayed over at my house and we forgot to tell Warren because he was a friend from Iowa about Mike. And Mike doesn't like to keep clothes on. He likes to be very comfortable. Especially while at home and so he used to wake me up and say good morning. Well, I let her stay in my room and so Mike comes in at 7:00 o'clock in the morning wearing nothing but whitey tighties. I guess he was 20, probably 20 at this point.

back to top

 

So it's not some little cute little kid. So we forgot to tell her anything about Mike. So she has this, you know, 20 year old man with Down's syndrome wearing nothing but little skimpies. And, you know, bending over and giving her to say good morning and you know, kind of giving her a kiss good morning. Laughter. So, you know, so I think that's kind of a -- but I forget, because it's just normal. It's just you laugh about things like that, it's normal. But [inaudible] wonderful about it. But, again, this is a friend of ours and it's not even my friend. So, I mean it was just an experience.

back to top

 

>> I have a question. Vocation, was he motivated to bring in money or [inaudible] from a family member?

 

>> That's another good question. He doesn't know if he makes five cents or 5000. To him it's how much do I need in order to buy a TV or a DVD or, you know, a pair of earphones. So he is not money -- I mean, I think because we make a big deal about the paycheck like, oh, congratulations, you got it. And really try to reinforce that and he was reinforced but speaking to the point of a shelter workshop when he was working there, it was nice because they called names out and everybody went up and picked it up. But for him it was an opportunity where he worked and I'm sure he felt that sense of pride in working and doing something. But he, from work, for him it was more about being around his peers. And have an opportunity to contribute something. Competitive employment was not the end, I don't think it's ever going to be a motivator for him.

back to top

 

>> I have a question for you. [Inaudible] the haircutting video. And [inaudible] and I wondered what they did, [inaudible] in order to keep that calm and worked together [inaudible]

 

>> It was, and I would -- going back and thinking was that -- my dad -- this is my dad all the time so what he thought is, I mean, I must have really done something to ruin it. I mean that was pretty much a mellow time, very calm. My mom is the excitable one. You could get her real fired up pretty quickly. Actually with him, if he says that one more time. But so [inaudible] shared with me the issue about the grocery store, I guess at that moment he [inaudible] but she needed to go to the grocery store. He went [inaudible] there are points where he would be -- she would take him to the grocery store and he wouldn't stay in the cart so he's pulling off things from shelves that she's trying to do things and as she is trying to, you know, pick up a couple things.

back to top

 

She said she spotted one time a whole bunch of soups all went down and everything broke on the floor and she said it took everything that she had not to fall apart at that point in time. So my dad got home from work and she said, that's it, like you are coming home from work, you know, early two times a week so I can go to the grocery store. I'm not doing this ever again. In relationship services, services that [inaudible] that you need to bring him out with him, with you guys wherever you go and so that was one of the reasons why she really continued to do it. But after that experience -- nope, you're coming with me. So it became like a group effort. But as far as my parents as a unit together it -- that, I think is very unique and [inaudible] they even to this day, there's a lot of things with each other and a lot of things happen within a marriage I'm sure, but it's still always [inaudible] Michael which isn't good. Amazing. They -- we have -- they have guardianship for him and to this day they're able to make decisions for him unanimously. That's really impressive.

back to top

 

>> [Inaudible]

 

>> Hard. It was really, really hard. It's hard on the parents and the help. I just had the parents, my mom and myself. For sure. It's the best thing and no one ever doubted that. It's awful investing for him but just knowing -- you know, there's always -- I shouldn't say -- for my mom. It was really, really hard because I think they are sometimes there's that dependency that they're [inaudible] and a person that you're going to take care of, you know, for the rest of your life essentially. And now somebody else is taking care of him and making sure his laundry is done and he's eating right. And these things are taken care of. He also recently had a major health issue. He had a pacemaker put in and so that was a little kind of touch and go for a little bit.

back to top

 

And so knowing that and having him away also was, is, a little stressful. Also, the last thing is continuum of care. Something else you want to talk about. [Inaudible] is him knowing what that [inaudible] expected, not expected, on my behalf that I will always be [inaudible] and I take that role very [inaudible] I'll be the one to make those decisions. So it was never something that my parents never asked, it was never even a conversation that they brought up. It was something that I brought up and I was part of.

back to top

>> [Inaudible] or would you have to do that here?

 

>> It -- there is a plan for each scenario so what happens, mom, dad and then myself. So we would -- [inaudible] my husband and I would go [inaudible] helping real great things. But also one of the options for here, we've got a lot of contingencies for him.

 

>> [Inaudible] and some of the research I've done with families, people with brain injuries they don't talk about it at all. You know, they avoid the subject but it sounds like you guys, really, you know, plan for the future.

back to top

 

>> And really so there was a [inaudible] thank you so much and I appreciate your input. There is also when 18 -- we made a trustee will which is also very important to do and to have those plans and those things in place. In case something were in [inaudible] things have happened. To have all that set to go. As far as kind of after that happens it was always me driving the conversation. I don't remember my parents bringing that up, it was always something that [inaudible] but as far as the preparation for what happens that was always something that was very communicated between my parents and still active. [Inaudible]. Any questions?

 

>> Do you have any help for your parents, especially Michael at the [inaudible]

 

>> Respite was huge. We had a few respite workers. There were some that came to the house once and never came back. But and then there was a couple that we had 10 years or so. So there will be one instance [inaudible] go on vacation or something that was, you know, almost impossible. So that was rough that one, come into the home and do that but it had to be -- it was a very drawn out process to actually leave for like an overnight.

 

>> Thank you so much for today. [Inaudible]

 

>> And can I give you guys my email so if you have any questions? Do you guys want that?

 

>> [Inaudible]

 

>> Yeah, but it's going to be a little while. Laughter. I'm probably about 30 percent done with it. So there's definitely more.

 

back to top

>> Have you got a publisher? [Inaudible]

 

>> I'm trying not to get ahead of myself, but I kind of want to [inaudible] right now, I'm just doing that. Almost pre-writing so to speak. And then once I get that all together I started with my contact was that [inaudible] be the heart of the [inaudible] put it that way. But it's kind of taken a bit of [inaudible]. My other question to you guys, when you read a book, [inaudible] as you read this book would you want to be in a chronological order or do you want it to be like, you know, when he was between zero and three these are the experiences? Or would you like to see it within like a domain kind of like how we talked about it today? Here is what the education was like, here's where some issue came.

 

>> I don't know, [inaudible] I like reading a book and then I [inaudible] I don't know. I had [inaudible] both ways now.

 

>> [Inaudible]

 

>> Jeff and I'm keeping true to the [inaudible] started with the childbirth. He did it as a chronological and so I got to see definitely a lot of benefits from that. Again, you know, if you -- it depends too who is picking it up, right?

 

>> [Inaudible] I think one thing that Mark said, chronological especially if it's going to be like people, like who are these people? I think they will really, really benefit on that. To me that would be the [inaudible].

 

>> [Inaudible] depends on the audience, chronological is more story telling, easier to follow. Unless she is trying to [inaudible].

 

>> Right, right. And I think that going with that general topic -- the way I started to write it was chronological. However, you know, it can very easily be changed so but I'd be happy to give you guys my email if you have any more feedback or think of things. I definitely am looking for as much input as possible. What would be the best way to do it [inaudible]

 

>> You know, you're [inaudible] send a message out to the [inaudible]

 

>> That would be perfect, that would be great. Okay then. Wonderful, so should I add it to that power point and send it to you?

 

>> I think in an email.

 

>> Okay, I'll put it in an email.

 

>> [Inaudible]

 

>> Okay, perfect.

 

>> You don't have a link to your talk and then or [inaudible]

 

>> Wonderful, thank you guys so much for staying after and all your input.

back to top