An Adult Perspective on Disability in Early Childhood - Part 1

Dr. Katie Herron from the Early Childhood Center talks with Adria Nassim about her perspective on disability as it relates to early childhood.

Adria Nassim received a Batchelor of Arts in English and a minor in Spanish from Brescia University, a small Catholic liberal arts university in Owensboro, Kentucky in 2010. She is a research assistant (RA) at the Indiana Institute on Disability and Community.  Adria was diagnosed with multiple disabilities at birth and during childhood including cerebral palsy, a learning disability and an autism spectrum disorder in her mid-teen years. As part of her role at the Institute, she writes for the Indiana Resource Center for Autism's monthly newsletter where she shares her personal experiences of life with autism. She also gives guest lectures to college students around the Indiana University campus in which she discusses autism from both a clinical as well as a personal perspective. She writes a quarterly column on autism and developmental disability for Bloomington's Bloom Magazine, which was previously published in The Herald-Times, Bloomington's city newspaper, every other week for the past 5 years. When she is not working, she enjoys swimming, reading, and spending time with her service dog Thomas.

Transcript

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Welcome to the Early Childhood On-the-Go Podcast, where the Early Childhood Center team shares ideas and strategies for professionals and families. Dream big, start early. Hi there, this is Katie Herron, Director of the Early Childhood Center at the Indiana Institute on Disability and Community, and we are back today with a special guest. I am very pleased to welcome Adria Nassim. She's here today to provide an adult perspective on disability and share with our early childhood audience some things that we think it would be helpful for them to hear from that perspective. Adria received a Bachelor of Arts in English and a minor in Spanish from Brescia University, a small Catholic liberal arts university in Owensboro, Kentucky in 2010. She is a research assistant (RA) at the Indiana Institute on Disability and Community. Adria was diagnosed with multiple disabilities at birth and during childhood, including cerebral palsy, a learning disability and an autism spectrum disorder in her mid-teen years. As part of her role at the Institute, she writes for the Indiana Resource Center for Autism's monthly newsletter where she shares her personal experiences of life with autism. She also gives guest lectures to college students around the Indiana University campus in which she discusses autism from both a clinical as well as a personal perspective. She writes a quarterly column on autism and developmental disability for Bloomington's Bloom Magazine, which was previously published in The Herald-Times, Bloomington's city newspaper, every other week for the past 5 years. When she is not working, she enjoys swimming, reading, and spending time with her service dog, Thomas. Welcome, Adria. Thank you very much. So, we are going to spend some time today talking about expectations. And anyone who has spent any time around me knows that this is one of my favorite conversations. Usually, I am approaching it from the point of view of when we are talking with families of young children about expectations, what do we want them to think about? I'm often talking with professionals about the importance of not just staying focused on the here and now in this kind of survival mode of early childhood, but thinking about what families want for the future so that they can link up what they're doing now with what they want in the future. So, I would love to ask you a few questions and get your perspective on expectations. And the first one, if it's okay, is to have you think back to your childhood and think about what expectations your family had for you when you were growing up. It started, expectations, very young. I had a routine and expectations probably by the time I was three, and it started with simple things that were developmentally appropriate, like, “Adria, pick up your toys, put your toys away, put your shoes where they go by the door, bring me your socks and we'll put your socks on.” I was physically with Cerebral Palsy, and I wasn't fully dressing in accordance with developmental milestones, like nondisabled peers, so my mom and dad would do parts of it. But it was at least, “Adria, get your socks out of the drawer and bring them to mommy and daddy.” It was in grade school, “Get your lunchbox out of the fridge for mommy and go get your backpack and put your backpack on because it's time to wait for the bus.” In elementary school, it was, “Make sure your backpacks are packed before bed and lunch boxes are in the fridge.” My parents picked out my clothes when I was little little biddy, because five and six and seven don't understand weather and temperature and what have you, and I was liable with a learning disability and had difficulty understanding time and temperature and temporal concepts to go out in sometimes a T-shirt and shorts when it was 30 degrees and raining. So, by probably fifth grade, they started saying, “Adria, it's gonna be 60 degrees, so at least get a dress shirt and a nice pair of pants and go put them next to your bed for school tomorrow.” And then my mom would look it over and be, okay, just to make sure that I wasn't wearing a T-shirt and a cargo pair of shorts or what have you in 30 degrees. But it would be like, “Adria, feed kitty, empty the dishwasher, dust the furniture.” And we were expected, and we had chores we had to do together to empty the cat litter and take out the trash. if our lists weren't done by the time my mom came home from patients, I didn't get to go to the bookstore that weekend, I was kind of a nerd. And Janelle didn't get to go hang out at a friend's house for the weekend or have a sleepover. You know, two things about what you said, but by the way, I think I love your mom. I probably need to get some parenting tips from her. But one of the things that I was hearing when you were describing your chores, which I thought was really interesting was you weren't necessarily being asked to do exactly what someone who was achieving typical milestones or whatever you want to say, you know, of the same age would have been asked to do, but you were being asked to do what you were able to do. And so, but you were still, the expectation that there was responsibility and that you were learning new skills were still there. We used the word, at least with early childhood professionals, of “scaffolding.” And so like that idea, grabbing the socks from the drawer and bringing them, even if you weren't able to put them on your feet yet, you were part of the process in some way. And I think that's a really good thing for people to think about - is what is that first step towards doing what we ultimately want to do? And then the other thing that strikes me, and maybe this is a whole other side conversation that we could have later, but I just think it's interesting is the idea that you were a little less, I don't know if you didn't notice temperature as much or just didn't think about it, when planning your outfit, for example, and so you got a little bit of support around that, like, look at what the temperature is, pick out your clothes. I just I dropped my kid off at high school every morning and there are tons of typically developing kids wearing shorts in 20 degree weather. And so part of me, I guess I just want to throw it out and maybe we just delete this part, but I think that sometimes as people with disabilities get older, it's important for parents and other people who are supporting them to remember that they have the right to make a stupid clothing decision, just as much as a typical adult or child does. Well, maybe not a young child, but like, you know, when you get into high school and college, if they want to wear shorts, they shouldn't be kept from doing that by a direct service professional or even by a family member. There's that dignity of risk, so, just wanted to throw that out. Okay, well, so you mentioned these expectations that your parents had for you. How did those expectations influence the things that you did, obviously you ended up doing chores and you had consequences if you didn't do what you were expected to. But how did they influence the way you thought about yourself and the things that you thought you could do or not do? They kind of, from the initial time I graced the planet and I suppose you could say, took the avenue of, we understand from a medical perspective that our child will have some significant challenges, but we are going to let Adria show us what she is capable of doing and how far she can go. I think medically they accepted the assessment of physicians and of specialists that things like balance, things like walking were gonna be a challenge, things like fine motor skills, you know, can you button a shirt, can you brush your teeth? Can you pick up an object, carry an object? Gross motor development was going to be delayed and requires significant therapy, social skills were delayed with the presence of the learning disability that was diagnosed in early childhood - social and emotional delay, and they understood that, but they also were willing to look beyond that and say, “Yes, this is part of her, but how far can she go, despite that?” And I think that many times parents, and I understand it is very, very challenging to become comfortable sometimes with letting a child that already has so much significant developmental challenges go beyond their comfort zone because they already struggle in a lot of ways. And many times, parents don't want to see them fail, they don't want to see them risk and then possibly fail. But guys, I think one of the most beautiful and beneficial things that my parents did for me was to come together as a couple and say that failure, as hard as it can sometimes be, is how a child learns and is how a child grows. And if we want Adria to grow into a more capable and confident human being, we're going to let her really see this world for all that it is. And they allowed me to to fail sometimes, and out of failure there came this concept that Adria is going to learn to problem solve. That problem-solving piece is incredibly important, but it can feel uncomfortable. And so, for families with young children, it's hard to get comfortable feeling uncomfortable. And that's part of what they're being asked to do, and it kind of goes back to the whole, at some point, if there's an adult with a disability who's choosing to wear shorts in the middle of winter, they're choosing to be uncomfortable and that might be okay, depending on, it's like that dignity of risk piece again. So, no, I think that’s great. And it sounds to me like the expectations that your family had about, let's see what Adria can do and open it up and then go from there has probably influenced you quite a bit. And yes, and I think as a parent or as a caregiver or a provider that works with young people, even in the video in many cases, you have to stop and maybe think, if he or she were to fail at this activity or at this endeavor, what is the worst that can happen to him or her? If, for example, you allow a young person to cross the street and go into moving traffic, unattended, on a busy California four lane highway, then I'm sorry, ladies and gentlemen, as you probably can well guess, you are looking at a severe case of neglect and severe bodily injury or death to that young person. But if, for example, he or she chooses not to do their homework because they want to play one more round of Call of Duty or Fortnite, and then the teacher on parent-teacher conference day says, “He hasn't turned in his book report to me, and we asked for it a week ago.” Well, natural consequences. That's just parenting. So many of the things that you're saying, which are really important for families of children with disabilities to hear, are also true for typical children and most humans, right? All of us need to be more comfortable with failing, all of us do it, all of us usually, many of us learn from it. And so, there's this sense and maybe there's some ableism built in there too, where we can't afford that same process to somebody with a disability. Like they shouldn't be allowed to fail. We need to protect them. And I think it's important to know that that doesn't have to be the mindset. The mindset can be, let's see what they can do. Yes. So we talked about the expectations that your family had for you. I'm curious, do you have expectations for yourself now if someone were to ask what are your expectations for your future? Could you say what they were? I was raised in a family that had high expectations of both children. I explained that I do have a younger sister that does not have development disability. But I tell them a phrase that my mother used with both of us. For example, let's say we left our cereal bowl at the sink and didn't put it in the dishwasher, and my mom would come home after patients and find it or that we didn't put our laundry away, and I say put away, because Janelle, at 15, could fold and put away laundry both, and was expected to do it, but with me, it was, “Adria, your laundry is in the basket in the laundry room, put it away.” I didn't have the motor function to be folding laundry. But I tell them that my mom would find cereal bowls or something not put up or the trash not brought in from the street. and she would look out and she’d go, “Girls, Dobby the house elf isn’t coming, he called in sick.” From Harry Potter? Sure, I know Dobby. And you know, I tell them as they have interest in working direct care that I was raised in a family that didn't raise or didn't look for direct care providers to do for me or so I guess you could say, be Dobby the house elf to me, that I was expected to the fullest extent possible participate in all activities. And so, if we were cooking dinner, I'll be on it. I can't cook a full meal, but yeah, if it's, “Adria, give me a half a cup of water and pour it in the bowl,” then do it. And“Stir ground chicken for tacos,” then stir it. You know, or if it's that, “Adria, you're gonna take Thomas for a walk around the block and I'm gonna make dinner and I'll call you when it's done.” You're gonna do something to participate in your day. Sounds like the expectations that you grew up with have stuck with you, and also sounds like they influence, do you share that with people that are interviewing with you because that's how you want them to be? So, it's also influencing your expectations of others. Sometimes, Katie and I had this discussion last night that I tend to have very high expectations of other people and high expectations of myself, and I don't do well, and I don't mean to criticize, I'm just pointedly saying. I don't do well with people that don't expect a lot of themselves, people that don't have high drive, are very motivated, very goal driven. And I have another phrase that I use with these young people that when they work one-on-one with me, and it is very, very important. I think that they understand, especially when working with young people with development disability, at all types and all levels, and one of my favorite phrases is, “Doing for does not teach.” I say to them, “Younger ladies, I mean, your role as much as possible, there will be some tasks that you will fully do. You know, top to bottom, left to right.” I mean, I can't do them, but I say, “As much as possible, your role is to increase independence or promote independence, as much of the daily routine as possible.” And many of these young people have not worked directly one-on-one with a young adult development disability before. And so, I think many times culturally for young women their concept at first when they take the position is that they have to do for, they have to just allow me to relax and I'll turn around to them and say, “No, I can do that.” And it takes a little bit before they'll be like, “Really, are you sure?” And, oh yeah. And that's something that my son has also encountered. He was encountering it from elementary school on where his biggest challenge with support professionals was helping too much. There was an assumption of what somebody needed and so there would be this jumping in when he didn't need it. And I used to tell my son's aides in school that if in a perfect world, they are in the back of the classroom helping whoever needs help and nobody knows that they are my son's aid, and they don't approach unless he comes and says he needs something. That's hard to do. That's very hard for folks to do. We're talking a lot about independence or interdependence because nobody is really independent, completely. But I wanted to ask you, because I think this comes up a lot when people hear you talk. And that is that sometimes I think when we talk about expectations, families think, “Well, that's fine for you, or that's fine for my son, but that's not the same. My kid is different. It won't work for my kid.” If you're talking about working here, if you're talking about living independently, and they think, “Well, that's all fine and good, but I have a child that has more support needs, or I have a child that I don't see that in their future.” So, what do you want me to do when you talk about expectations? I don't know if you could respond to that a little bit. First off, thank you for asking this question. I think it's one of those important questions to consider, what I would ask parents and providers to do in caregivers whomever you be in the boat, shall we say, is to remember that when you're talking developmental disability, the field of developmental disability is very, very broad. So, I would start off first and really stop and think, “Am I doing things for my child or the child that I work with or render services to because it has been clinically assessed and determined.” For example, let's just say, for example, that he or she has, and maybe in your specific case, it's a different diagnosis, possibly, that he or she has severe autism with the secondary diagnosis of intellectual disability. Or am I just surmising that he or she does have significant intellectual disability needs one-on-one guidance or assistance with all activities of daily living and elements of his day because he doesn't communicate well, because he's got severe impairment with potentially emotional regulation. He has significant difficulty with, what do you call it? Autistic tendencies like rocking, humming, all those sorts of things. I mean, has that truly been clinically determined, or are we just guessing? I think your first avenue is to go get a clinical assessment for each child that you worked with from a licensed provider, and I think that that assessment needs to not only be done when he's three and five, but needs to be repeated as the child grows to really determine what are we dealing with? And even that is not set in stone, right? I know, that's just kind of a baseline of, okay, here's what we think we know based on the medical profession. But now here's what we know as a family. Here's what we've seen them do or seen them in a moment, you know, the potential, cause there's that too. And I think, too, with severe disability which often does encompass difficulty with speech and language impairment. You have to realize, too, that they may not be able to communicate verbally, but there are other avenues to speech in language acquisition. Yeah, it's about communication, not verbal communication. No, I mean another piece of advice I would offer too if your child has severe speech and language impairment. Go to a licensed clinical speech language pathologist. Get a licensed evaluation for another communication method. Ask that speech and language pathologists, their recommendation based on your child's functionality in motor development, in visual tracking, would a tablet be better with an assistive communication app, would American Sign Language with his motor function be better, would something like picture cards be better, typing? I don't know. There is a myriad of ways. Start with what he can do, what you know he can do, and build up from there and don't, of course, and I have to give you this piece of advice as well. My parents, when I was three and a half and when I was five they weren't worried about, well, we want Adria to live in an apartment by herself, we want Adria to go to the grocery store and be able to come home. Guys, I'll be honest, and I have milder cerebral palsy, what's called a nonverbal learning disability, and level one autism spectrum disorder. I didn't cross the street independently until I was 23 years old. And when I graduated college, my parents didn't think that I would live in an apartment by myself. A dog was not in the picture when I graduated college, a service dog. It was that I would live with roommates in supported living through a developmental service provider. So even then, expectations change. Yeah, with new information. It's not that you have to have this set in stone picture of the future when your child is three, because we don't know. There are so many things we don't know. Is three different than five different than 13? Sure. Yes. But it's okay to have hopes and dreams, right? It's okay for families to think, you know, we would love someday for our child to be able to go to college or to be able to live where they want to live, because for some families, that might be in the home or for some families that might be in a setting, a supervised home setting, or it could be in an apartment. I mean, who knows, there's so many factors. I think the idea is that there's freedom in being able to hope for things and then work towards them. Because for families of young children, if I thought when my son was little, that he was always going to live with me and he probably wouldn't have meaningful employment, and he was always going to be with me. Then maybe I wouldn't focus so much on getting his stupid coat on in the winter, because he's gonna live with me. I'll put on his coat every day for the rest of his life or the rest of my life. But if I thought no, he may very well be able to go out and do other things. He may be able to do that, then I'm gonna be motivated when he's two and three to think about how would he put on his coat by himself? Will he use a dressing stick? Do I need to talk to the occupational therapist? Do we need to start getting vests and see how those work instead? I wouldn't have that motivation if I didn't think or hope that down the road he might need that skill. You know what I mean? And that's the thing that my parents did. I gave Katie this example, I've never been able to really effectively tie my shoes because of fine motor delay and also significant visual spatial learning disability. But here's the thing that my parents did. I still wasn't tying shoes at ten, so my parents looked at things like sketchers with no laces. Well, let's bypass shoelaces altogether and say, can I hear you put shoes on? Well, I can, I could not at five, but at 10. Yeah. And that's such a good point because it's like fighting through each of the little steps to get somewhere bigger, but sometimes it's about how do we do this smarter? I remember how many years people tried to get my son, who doesn't have arms, to use scissors. I mean, it was a probably a three-year process of trying different adaptive scissors and doing this and that. And at some point, I'm like, you know, I don't know if I care that much, as an adult, I get away without using scissors. So, you know, do I care that much that somebody has to cut something for him? Or is that maybe not a skill that we can use or a skill that we can work around? And in fact, it was, and he's fine, and in fact, now he uses regular scissors and just figured it out himself because he actually was motivated to learn that skill when he was much older. So, I think remembering that you don't always have to go down the same pathway as everyone else. But I guess the expectations piece is just for me well, the last question for expectations is, “What would you say to families of young children who may be very focused on the here and now, and haven't thought about the future as much, except maybe to worry about it?” Let me just say that I understand that worry for a child's future, especially when your child has some level of development disabilities, is very real. I understand that it's going to have been, let me give you an example when my mother and father dropped me off at college. And you may be hearing that and thinking, well, God, my kids and I aren’t even gonna go to college. He doesn't tell me what color the sky is or, you know, that he loves me in the morning or he’s so far from you. But when my parents dropped me off from college, I remember that my mother let me out of the car and of course they set up my dorm room, and they just kissed me goodbye, and told me that they would see me in a few weeks. And they left me in the care of the director of the clinical and psychological services division, who also has a daughter with some level of medical complexity. And my mother drove off crying and said, “Oh my God, Ben, what if we're wrong?” Ben being my dad. “Oh my God, can she really do it? Oh my God, what if we've made the wrong decision?” And she cried and cried and cried all the way home. So yes, that fear is very real. But I think one of the best things that my parents did, and I hear many times of parents of teens with developmental disabilities, waiting until that child turns 17, 18, 20, and you know, because in the Indiana school system, many teens with developmental disabilities may be in school until they’re 22, depending on their situation, to plan for transition. And I have to tell you my parents didn't. They started planning with me, with my involvement. I would start attending case conferences because under Indiana law, a student with developmental disabilities that has an individualized education plan can attend transition conferences or case conferences at age 14. They started planning for transition to adulthood at 13. And it wasn't, “Oh, we have started filling out college applications for Adria, we started taking college tours.” Good Lord, no. It was that we are going to promote her interests. We are going to promote her skill, her talent. So, they knew that I was very good in writing, that I was very good in speaking. I think at one point, they did maybe just for kicks, give me a tour of the school where my dad taught. I've been there since I was two and a half because my dad would pick me up for an appointment and you know, I'd go in the spare room with the chalkboard and color on it, but it didn't really mean anything to me then. So yeah, I started, I toured there. I met some other faculty. And it may be, guys, that your young person doesn't have plans to go to college. But everybody deserves a chance to see what they're interested in and what they’re good at and this is a big one, because sometimes I hear so many times from parents. Well, my kid isn't like Katie said, isn't gonna be as independent as you. They're gonna live by themselves. Well, let me just say, I don't. I have college students that come in through the week and help me make dinner and we go to Target and we, I don't know, change sheets and vacuum floors and walk Thomas and just manage life, for goodness sakes. So, I'm not living. The idea of living fully independently with developmental disability, I think is quite frankly overrated. And again, I would just indicate that I'm not sure that anybody lives fully independently, ever. It's just independent. I mean, we're all interdependent at some level with other humans. And so, I think that term sometimes gets thrown around and it's not really what we mean. And I just want to throw in one last thing and then we've got to wrap up, but you said your parents started at 13, and I just want to say that if they started really intentionally thinking about transition at 13, that means they were thinking about the future much earlier than that. And so, when we talk about thinking about these things in early childhood, we don't mean that you're going on college visits or that you're filling out even forms or anything like that. All we mean is that you're thinking not just in the one moment, but you're thinking about the entire lifespan of your child and your family and you're thinking about if I have a hope and a dream for something like this down the road, that as I make decisions, I'm pulling for going in that direction. I'm trying to not move away from that hope and dream. So, I'm gonna wrap this up, but Adria, thank you so much for being here and sharing some of your story and thank you all for tuning in. We'll see you next time. Thank you. Thanks for listening to the Early Childhood On-the-Go podcast from the Early Childhood Center team at Indiana University. Learn more at IIDC.Indiana.edu/ECC/