Having High Expectations for our Kids
I know that I’ve told the story a zillion times, about how I was told how to feel about Kevin before he was even born. So, I won’t go into it again. My point being, that many times, society has some very strong, ingrained and low expectations and beliefs about our kids. And it’s up to us to break out of that routine and end the cycle of thinking. While I’m not perfect, I try to be more intentional about the choices I make, as often times Moms are the worst offenders when it comes to being ableist.
I had the opportunity to chat with Deborah Winking Ph.D. about this topic. Her book, Capable: A Story of Triumph for Children Whom the World Has Judged As Different, is coming out soon. You can watch our chat below or read the transcript.
High Expectations Parenting
Speaker 1: No one can see us. I want to give it a minute or two to show up in Facebook feeds and join us. Yup. And there we are. We are, I can see us on the page, so
Speaker 1: All right. No good. And we already have a few Watchers, so welcome everyone who is tuning in so far for our, my weekly Thursday Facebook live chat. I’m going to introduce today’s or this week’s guest in just a minute. So grab a drink, grab your lunch if you want. Are you near, I’m sorry to ask you, are you near Seattle or are you just, I just assume everyone
Speaker 3: in Colorado. I work at a Seattle, but I live in Colorado.
Speaker 1: Oh wow.
Speaker 3: Mountain time. Not, Pacific. Yeah, it’s quite, it’s quite confusing in the gig economy, isn’t it Yes. I worked for the university of Washington, but I live in Columbia.
Speaker 1: Oh, okay. All right. I just saw your signature, you know, university of Washington and everything, so I just assumed you were there.
Speaker 3: Absolutely. No, and there’s no reason not to assume that it’s just, it’s, that’s my work email address, so. Gotcha. Yeah, I head out there a number of times a year, but,
Speaker 1: and not lately. Not lately.
Speaker 3: Lately. Absolutely.
Speaker 1: All right, well if you’re just joining us, I’m going to let our guests introduce herself in just a minute. Welcome if you’re new here. Of course on Lisa from a day in our shoes, been offering a lot of guests that were kind of, we tailored our talks specifically to the pandemic and distance learning in the shutdown and things like that. today we’re going to switch gears a little bit because I’m talking about the pandemic. You can only take so much of that, before you need a break. also because in addition to just liking her, her book, which she’s going to tell you about in a minute, but liking the content and the book, liking the focus of the book, I felt it was really relevant to now because again, I want to reiterate to parents that, for all the negatives about what’s going on right now, one of the positives is that probably for the only time in your child’s life, we have like 100% control over their environment and we have just, I mean, yes, they’re with us all day, every day and that’s good and bad.
Speaker 1: But again, we have 100% control over.
Speaker 4: Yeah.
Speaker 1: The challenges that are, you know, the tasks that are given to our kids, the challenges that are given to our kids, what skills we see, what opportunities they are presented with, what feedback they are presented with. and that can be overwhelming. Like when you think about it, like, Oh my God, I’m responsible for all of that. right now. But again, we can turn that into a positive and that we can really see what our kids can do when I’m presented with, with certain challenges. So let me introduce to you, Deb, Debra winking. and she can tell you a little bit about why she’s here and what she’s done and what she does, in life, both personally and professionally. Go ahead.
Speaker 3: Hey, thanks so much, Lisa. I can’t tell you we did not plan this, but that could not have been a better segue. I 100% agree with you. And actually what you said leads right into what I wrote and why I wrote. And it has to do with parental influence on our children. We are the most influential people in our kids’ lives. And so what we do matters. So that’s kind of,
Speaker 4: can I,
Speaker 3: behind what I wrote, I like, I’m worked for the university of Washington center for educational leadership a lot in general ed right now. I started out my career, in special education working at the new England center for autism. Loved, loved teaching, teaching kids on the spectrum. That was my, has been my passion for many years. and, and then I found myself, I’m the parent of a son with a rare genetic syndrome. So, throughout all of that sort of, I sort of found myself on the other side of the desk, if you will, after being a parent, being a teacher and saying some things that were right and some pretty things I’m not too proud of to parents over many, many years where I was completely naive to what parents were facing. And then to be that parent, has given me a different perspective.
Speaker 3: So, after, and, and the reason I went into special ed, or the reason I went into special ed, was based on a long held belief. I was 13 when I was, asked to work with kids with special needs in our church basement because then this was just around 76, 77 and kids weren’t even welcome in our schools. And I realized that, first of all, I learned a lot more from them than they, from me. And, one of the things I learned was those kids I work with, which were my age and older at the time, were a lot more capable than our communities, our schools, and sometimes our, even even our parents, wanted to believe. And so that kind of followed me into education. And as I worked with kids with autism, I found that unfair testing practices, low expectations, and, and just beliefs about what the kids could do.
Speaker 3: so my kids short over and over again. So then I went back and got a PhD in, in educational testing to really kind of understand what does it mean when we say a kid has had this diagnosis or this, label and, and what does it mean What does a label tell us and what, what does it lay the cell short And so, you know, with all that behind me then as a, as a parent of my own child, I had long, I have really long believed that, that what we, that our beliefs and behaviors as the most influential people in our kids’ lives can impact, could impact our kids’ performance. But I didn’t really have an opportunity to test that out until I had a kid with my own of my own and I saw, Hey, what I do matters, the messages I send matter. And so that’s, that’s kind of the background for my writing of capable is sort of my story of 20, 20 years of trying to send my kid, the messages that I want him to get, which takes us full circle to your lead in, which was the notion about how we have some control about the environment our kids are in and the message they’re getting from it right now in this time of Kobe. So that’s that.
Speaker 1: Okay. So, for those of you who are watching right now, if you have a question for Deb as we’re going along, go ahead and put it on the comments and we will see it here on our screen. do you want to, tell us a little bit about your child And I feel I always feel a kinship with those who have kids or who are in the rare disease world because I’m, I’m in the rare disease world, myself and my family. but tell us a little bit about, your son’s story or your family’s story and then how you got to,
Speaker 3: sure. Yeah. Right. Well, so yeah, my son was born with a rare genetic condition called Sotos syndrome. And it, it presents with low, low hypotonia, low muscle tone, every muscle, the body. So it affects eating, drinking, standing, moving, being able to squeeze everything. and, so there’s a whole collection of, conditions present with that, learning problems, tumors, et cetera. But the, but the real big, real big definer of sodas is, it’s a, it’s a, it’s an overgrowth syndrome where fast growing cells costumers cause the hypertonia cause the learning problems, that entire piece. And my son also, as a secondary condition, and this is not even considered in the world with special needs, but, develop a classic stutter when he, when he was able to begin having enough Tony’s mouth to speak clearly, he developed a, classics that are so, that he’s carried with him too, which is outside the realm of special special needs. But I see the same kind of prejudice, prejudice and, and kind of,
Speaker 3: labeling as less than making it in our mind saying, Hey, I know what this kid can do because of how he speaks. So, so those are, so that’s kind of where he started out. we labeled it about 16 months. I didn’t believe it because he had seen it in so many specialists. He’s a twin in so many specialists. I said, if this kid had a syndrome, it would have been found that. But in fact, it, it, it wasn’t, and it was confirmed and he was followed by geneticists, et cetera from then 16, 16 months on. But I will tell you, and I know because my, all the students I worked with when I worked, with my, my, students with autism were all, had very severe challenges. Most of them nonverbal, most of them, had severe injurious behaviors. And I will tell you that my son is not, I can tell you my son is not.
Speaker 3: on that end of the spectrum, he’s, he’s, I ha, I, I maintained a goal for him that I wanted him to learn alongside and compete kids without special needs. And that was just my choice. It’s not a choice for everybody and it’s not even, doesn’t need to be, it is not the right choice. But it was what I wanted. And so by, sixth grade, through a lot of work and working alongside the, the specialists, the army of folks that we have working with us when our kids are on an IEP. I was able to, we were able to get him out of special ed. So he, then he continued, in the school system after sixth grade, in general education. So that, I, I credit my son for, he really, really did a lot through OT, PT, speech, with his special ed, with his special ed teacher in case manager to get to actually get to the point where, we were able to exit special ed.
Speaker 3: So, and, and I maintained that he would do everything his twin sister did since he was, you know, that 16 months old where he was standing, moving, walking, and she was running. and so that was kind of my, my mantra and, and how I sought, sought to raise him. and today, I would say that even though he’s still is, still attracts a lot of prejudice, prejudice, a lot of, people underestimating him. He is now at the university of Wyoming and pursuing college. So exciting. Yeah, it is. It’s very, it’s, it’s wonderful. And, and it’s, you know, it’s, it’s, it’s a story of resilience and perseverance on his part to get where he is.
Speaker 1: Great. alright, so then tell us about the book for, what’s the central theme Tell us you know, about it and,
Speaker 3: yeah. so I just, I just started out, because I had written a lot academically, you know, as an educator, as an educator. and every time I sat down to write something, I thought, Oh, what new do I have to offer I really don’t. I’m having a nude offer. I don’t, I’d start up, I’d started concept for an article or an article in education. I thought, you know what, I don’t have anything really to add there. But when I started working on this, I thought, no, you have something to say. And I felt really strongly about it because I saw over and over again that, the environment set up for my kid, the messages that I sent him made a difference. And so I just wanted to share it. And, and that is really it. I, I, I feel that, parental beliefs and behaviors and manifested parental beliefs manifest in the behaviors that we then act out toward our kids.
Speaker 3: make a difference. and, and I think there’s, there’s, and I talk in the book through chat, there’s a lot of, I will tell you I wrote, as a, it’s at the intersection of prescriptive nonfiction and memoir. So there’s a lot of humor and humility in it. I talk about a lot of mistakes I made. I, and, and, but what I, but what I do more than anything is try to, get parents a visceral sense of what and what it felt like to parent as I was parenting and, hopefully inspire other folks to, parent intentionally and graciously. I made a ton of mistakes, but parents, intentionally and courageously to send their kid the all important message that he or she is capable. And I think it, it really does, make a difference. And it made a difference in my kid’s life. And I hope the message people get from this is, Hey, she did this with her kid and it made a difference for her child and maybe it could make a difference for me and my child as well.
Speaker 1: Right. Can you give, like what are like a couple of specifics of when you talk about sending that message that a parent might be inherently doing that they don’t realize they’re doing that’s bad or things that you know, they can turn, you know, how they maybe present this information to send the message that a child’s capable.
Speaker 3: Oh yes, yes. so I can, I can say it, it happened, it happens over and over every day subtly and not so subtly, you know, when we say, Oh, you know, easy can pick that up, but gay probably can’t or don’t give him that. He can’t do that. Or, for example, I have other friends who have, one on one AIDS and they’ll say, Oh, Jorge misbehaved today. And it was because he didn’t have his one-on-one. Those kinds of messages, those things we say, even if we say them within earshot of our child, our child hears that and says, Oh, this is the person, the person who who I believe in the most. My parent thinks I can’t do that or thinks that I may do less than a good job when I’m not with my typical one-on-one or, isn’t sure I can pick this up, be able to make it through an entire scouting meeting, being able, I doesn’t think I can, do that problem or do that page of problems when they say I probably can’t.
Speaker 3: And it, it says simple. It says simple. And as profound as that, and I, I really, I started out the book with it. And it’s funny and true. Started the book with a simple illustration from, from science and from basic science and what we’ve learned, throughout the years and how it plays out with people. And I started out with the case of rats. And it’s true, it’s true, in rats. And it’s true in people that, what we, what we think affects how we behave and how we behave affects others. I talked to about stories and other folks in the book that inspired me and I don’t know if you, are you familiar with Daniel Kish Now If I can take just a minute. It’s, it’s, it’s fascinating and you can look him up on, the podcast Batman on NPR and he’s a boy who was born blind but blind in the first year of his life.
Speaker 3: Now that you say the story. Anyway, the point is, he liked to climb. His mother let him climb. He wanted to get on a bike. His mother let him get on the bike and for, you know, with a lot of missteps and a lot of accidents along the way, it turned out that Dana Kish was the blind boy who was navigating the streets of this town on a bicycle. And the blind boy that was leading sighted people through the, through forest. And so we make the point, that Hey, certainly we can’t change agenda genetic diagnosis. We can’t, we can’t cure bone, ligament, and tendon. If your child has a spinal cord severed, we can’t, certain things we can’t change, but we can move the line of what is possible by believing in our kids. And there’s countless stories of that. And so I, I make the point in the book and I guess I want to be clear about this and never talk in the book about as some folks have, parent advocates have of curing my child because I haven’t, and I don’t, I don’t even, I think curing misses the point because, we love our children for all of their uniqueness, all of their idiosyncrasies and beauty.
Speaker 3: And also we want them to live their best lives. So I’m not saying that,
Speaker 3: you know, the folks in the deaf community, for example, that say, you know what, it’s, it’s not our problem. It’s the hearing community’s problem. I’m not saying it’s that inherently because we think differently because we’re autistic, Chloe, or we are, we communicate differently because we’re deaf or whatever it is that we’re wrong. But we also at the same time, one, our children live their best lives. And so in living our best lives, we can, have expectations that our child, we can set an expectation for our child and set the conditions for that and move the trial child toward whatever that expectation is. And I’m not saying that that expectation for everyone is the same just because for my kid it was, Hey, he’s going to do everything his twin sister did. That’s, that’s one example. I have plenty of friends and plenty of people I counsel who say, Hey, my goal for my child is to, is to be in a classroom of, of kids who are speaking and my child is nonverbal. That’s your goal. That’s your goal. But whatever you see as that expectation for your child, I talk about focusing on the next 15 yards to get to that goal. And that, in fact, going back to the research in grit and mindset, Angela Duckworth and Carol Dweck, that we can move the line of what’s possible by, by actually setting our kid, consistent messages that they’re capable.
Speaker 1: Okay. So how do you, and, Stacy, I’ll get to your question in a second, but I want to skip down to, is Tiana, I’m not sure if that’s how you pronounce that. her question, because her question was kind of the question that was going through my head when she said, do you keep your son’s standards at the level of his age group or do you lower them And I don’t like the word lower, but I know what you mean, the just what’s appropriate. But I, and I would say, you know, using the bike riding example, my child is 13 and cannot ride a bike. So in my head I go through conflicting messages because part of me says he cannot ride a bike yet. Right Yeah. Which means, you know, it might be 20 or it might be 25, but then the other piece of that is, a person’s entire self worth doesn’t necessarily depend upon riding a bike. And if he never learns to ride a bike, that’s okay. And that’s acceptable. So how do you mesh those two kind of processes Or how do you know as Fianna is asking, how do you know where to aim
Speaker 3: Yeah. You know, I love that question Fianna and I, and I love what you’ve added to it. Lisa, because you’re right, first of all, I make the point in the book that as a parent, you know your child better than anyone you know them and don’t let people tell you you don’t because of a diagnosis or a label. So, you know, and I, I feel like it’s apparent we get when we, when we’re not being led by our fear, we’re not being driven by our own fear. We have a gut sense of where that should be. And you’re absolutely right. There are things with my son that he was never going to learn to do. I mean, for awhile it was beginning to blow out candles on birthday cake and, and we can’t, that can’t be the source of a person’s work. You’re absolutely right.
Speaker 3: So what I had to do was hold two, two ideas sacred at the same time. It’s still an the sound. See if this helps at all. But a steely-eyed recognition exactly where they are. It’s not being a denial. It’s like that. And I, and I talk about it a lot in the book. Wow. You, he can’t walk without falling over. His balance doesn’t, doesn’t play out anywhere. He has no, no. endurance. He can’t, he can’t do anything for very long. Kids walk away from him. He can’t have a conversation. All these things, that’s the, now that’s current and that hurts like chilling as a parent and at the same time you need to hold on to what could be. And so holding onto both of those, then you can look at those next 15 yards. So here’s an example to go to Fiona’s point.
Speaker 3: Okay. I know what he can do now, but I had an idea in my mind of what I wanted for him. And so I would just look at what’s next. And a lot of that, that next 15 yards, it wasn’t to be there. It wasn’t to be at the place where he’s enrolled in the university of Wyoming. It was okay, he’s going to be able to need to walk with his hands in his pockets instead of out in front of him like Frankenstein because that’s all he could do to balance. And I don’t say that ingestion, that is not an insult anybody, but I had plenty of parents, penny had people in the community calling my child Frankenstein boy cause he walked like this as an eight and nine year old. So I think you have to hold onto what is and then have your goal and see what’s close to that.
Speaker 3: And I did a lot of work at shaping behavior as a teacher of kids with special needs. So what was close to that was being able to get first to get those hands in the pockets so that he was, he was able to stand up without having his hands in front of him. Then it was the next space and then it was the next space. So back to the piano, I would say that you will know you, you should set your goal for your child as to what you think you, where you’d like him to be. And then look at that next 15 yards. That may mean lower than his, his, his age level. That may mean well lower than his age level. That’s your ultimate goal. Maybe closer to his age level. I can give you one more example on that if you’d like and stuff.
Speaker 3: When, when my son was in second grade, they said he will never, he will never right. And, and again, my son’s older than you all. So you all with young kids will have a different, different assistive technology. They said we’re going to give him an alpha smart. He will never, right. And that didn’t match with the goal I had for my son. I wanted him to be able to, to print. I had a vision that someday he’d leave a note on the refrigerator for a roommate or maybe, God forbid a girlfriend, that he would someday, sign a paycheck that now, even though we don’t use writing a lot these days and wanted him to be able to do that, because what happens when you, when you, when you, when you can’t do those things. And so I had an idea. He will. Right.
Speaker 3: And so when they kept pushing the alpha smart, I, I, it didn’t match my goal. And so I, I said, no, I will not take the outsmart what we list. You can use the alpha smart as an reinforcer for him to type spelling words after he hand prints them. But I will not just take the out the smart because I knew that would close the door for my child. And if he said yes to the alpha smart, even though that might be more comfortable, safer and easier in the short run, I knew a closed door to a longterm goal. Does that make sense
Speaker 1: It does. And I think, I think that helps answer, you know, Steph, Stacy and Jennifer’s questions about some of the struggles their kids are having. I think you need to, you know, Stacy in particular, I think Stacy, she’s only looking at the end goal and I think you need to back up a little bit. Not every IEP has objectives, underneath goals. that doesn’t mean that you can’t necessarily create them within your home life or within, you know, homework life. and of course once things get back to normal, get those added in, but kind of break it down into chunks. So just like we chunk down work for our kids, you have to kind of chunk down that end goal. So if he’s easily overwhelmed with the end result of a finished assignment, you know, I think, I think break that down,
Speaker 3: you know, and, and to state that Stacy’s point other as well, I did not write a book about this child, but one of my other children had, have attachment disorder. And so I understand the PTSD you’re talking about there, Stacy and I also, 100% agree with Lisa if there’s however you can do it to make sure those needs are met. I have to have food snacks in front of my kid all the time so that he always knew that, that he had what he needed in front of them in front of him and to kind of even partition off and shorten those assignments. And guess what, over time the goal is you’ll lengthen them. You’ll, you can move to your goal. But as we said, not, not immediately
Speaker 1: and I mean, and ask him what’s overwhelming him and you know, just kind of start chipping away at at what yeah, I mean, you know, like you know many goals and, and things. We just discussed this yesterday actually with, I had an OT on and we just didn’t do Thursdays cause on Thursdays she provides services virtually to a lot of our clients. but we talked about kids getting overwhelmed and just controlling what you can first, which is the home environment, you know, and, and a comfortable workspace and it distraction free work zone. So I don’t want to get too much too far off topic with distance learning and IDPs. but yeah, I would say break it, break it down as she said and you know, that 15 yard piece, what can you achieve, you know, to get you to that next level
Speaker 3: and then celebrate. You know, that was one of the things I talk about in the book too is is, is once you do those small, do those small increments take the time to celebrate because I think it can get really tense right now. And even doing that small piece is going to shape behavior for the future and don’t think, Oh wait, quit. Just, I can’t quit to celebrate for a second with my kid. He’s got to keep at it. But that time to celebrate.
Speaker 1: Great. let’s see where we are. so we talked, sorry I lost my spot on my notes kind of talking about today.
Speaker 3: We, I wonder if, I wonder, I wonder if we want to say a word about, the role of challenge in our kids’ lives and I’m leveraging natural curiosity. Is that something that might be helpful
Speaker 1: Well, that, and I think, we just had a new question pop up, which I think is great cause that was on our list. or something that I wanted to talk about. And that’s Keisha’s question and I’ll read it. Sometimes in those meetings, I feel like they look at me sideways because I have high expectations and know what he is capable of and I feel like the label lowers those expectations. So yes, I mean as as a parent to a child who has intellectual disabilities, I can tell you, you know, cause that’s the big one. I think. I mean, I’m not trying to invalidate parents and I have no idea Kesha, what you’re talking diagnoses are, and I’m not, I’m not asking. but, but I trust me, I know what it’s like to sit in those meetings. And when you have a child who’s nonverbal and intellectually disabled, the bar is really low. so yeah. So what, what’s your advice for, for those situations
Speaker 3: Yeah, Kesha, I, I feel you because, so initially my son was placed in a multiple handicap preschool class, with, with all kids who kids, you were, on standing boards, kids who have very severe needs. And he was in that class and he was with, that’s where he was diagnosed in place. That’s where he performed at that time. And that’s fair. That’s where they placed him. But I felt like he could do more. And I agree with you. I, I went in to be aware of what was going to get to know the classroom environment. I pretend to be pretending to be, and I actually was, you know, stapling bees to the bulletin boards so I could see what life was like in that classroom. But I realized that kids were, most of the time in the classroom, kids were waiting to be served up activities and weren’t allowed to take initiative.
Speaker 3: And we could do a whole nother Facebook live on evaluating the environments that your kids are in and whether or not they’re inviting environments that invite challenge at whatever level that your child is at, whatever level your child is, or whether kids are being waited, waiting in a lot of waiting to be served up activities. And I think whether your kid as is, has a very severe need or a mild need, we always have to be the, keep our kids on their learning edge, whatever it is. And so in my case, I know when I finally, asked to, have more challenge my child and ask for him to be placed in different classrooms, they looked at me like I was crazy and also said, when they had the exit that classroom for another classroom, they said, don’t worry, we will write the paperwork.
Speaker 3: I think this was preschool. I said, you know, I just want him out of here right now and I want him someplace else. And she said, well, write the paperwork in such a way that you can get him get back in if you find out that you’ve made a bad mistake. And I thought, thanks. But at that point I was ready to take my chances out on the road because I felt that the level of challenge I could give him myself was higher than what he was getting in that classroom. Now that’s not always the case. And I have to tell you, as a special, as a special needs teacher, as a teacher, with kids with autism, 90% of our teachers are trying to challenge those kids every day. But you can find a mismatch in the environment your kids placed in. And that’s okay to do.
Speaker 3: And I have to tell you, I feel kinship with your Kesha. I felt like my kid’s label, lowered expectations for him and I wanted it. I wanted that label way behind. I wanted, I wanted them to see my son and I didn’t want that label forward and, and that was my fear and that’s why I matter of fact it’s, it’s written book. You’ll, if you read it, I read it, we talked to him about having, cause there was all these, he wasn’t four different times therapy and everything and I need special ed, but we talked about him having pain, muscle weakness, condition. We didn’t even use the word syndrome until he was 16 because I knew that the word syndrome would conjure up notions that I didn’t want him to have to deal with. And that’s every parent’s decision. But I certainly wanted that label to recede well into the background because I felt even just the label sent messages. This has come up in a couple
Speaker 1: of podcasts and Facebook lives that I’ve done and I have it on my site. and it’s come up. Yeah, that’s, it comes up often. And the person, if you, if you’ve ever heard her speak, she’s an inclusion person. her name’s Darcy Elks and she’s someone who turned me onto this concept 10 years ago. And again, I have a free printable PDF workbook on the blog. just look for a vision statement and of course self determination is always the goal. So you want to Mack or encourage her to, you know, have your child participate in this exercise to the maximum extent possible. what that’s gonna look like is going to vary obviously based on the child and their age and everything else. But she told me the story of, and it was at a workshop, that her child, her daughter has down syndrome and her high school team while they were okay, they had this vision of her daughter was going to then go on to a sheltered workshop.
Speaker 1: and that was, that was the team’s vision for this child or the student. and, but the parent had a different vision and sort of the student and that was supported living with a part time employment. And in fact at the, at the time the, this young lady was already working at a local retail store. So really as far as her ultimate goal of supported living and part time employment, she had already achieved half of it. and she just was not even old enough to achieve the other half. She was still in high school. but you have to have the same vision and if the vision isn’t the same with your team, I’d say the, the IEP is your roadmap and that’s the team’s job is to develop this roadmap. So how do you develop a roadmap if you don’t know where you’re going and that’s why you need to sit down with, with your family and now is a, is a great time since we’re all stuck together. but to work on that vision together. and again, for every child that’s going to look different. For some it’s going to be college. and if it doesn’t include college, that’s fine too. but you know, we’re talking about vocational training or part time employment or you know, whatever it is,
Speaker 3: you know, Lisa, what you said about the vision. So I told you, and Kesha based on your question, I offered the story of preschool but then going through elementary and special ed by sixth grade, that notion of having a common vision and working with your team to get, the only reason, and I will say this complete plate humility, the only reason that my son edited special ed because 0.4 tenths of 1% of kids who enter in special ed for non speech reasons ever get out. So the reason he got out had to do with walking alongside and having a common vision. And you said with that teens or I got to the point with his case manager where everyone knew the goal was for him to exit. And so each, IEP objective, if it was on there, we made sure there was kind of a maintenance piece of that so that he was moving out.
Speaker 3: So, you know, he was getting, teachers were writing his work for him, writing his work for them. He wasted and they wrote it. And I knew he would never get out doing that. teachers were going after he wrote short responses and correcting his letters so that the general ed teacher could read it. there were many things that they supports were in place. And so by walking alongside that team, we were able to come up with a maintenance goal where he was, he was phasing out of having other people write his work. He was phasing out of having teachers go in and, correct. He was phasing out of having shorter assignments. He was phasing out of having someone constantly, checking his work and making sure he turned stuff in before it went to the teacher. So that when it came time to actually exit, gave her really big part of that meeting was also understood that there ain’t no free lunch after that. You know, that, that what life would be like with no support because otherwise that’s a dropoff point that most kids can’t do. So I would, I would second what you said, Lisa, about making sure you have a common vision with your team and so that everybody’s on the same boat because if your expectation is this and your team, I mean he was in sixth grade in your team’s expectation is that he’s just doing fine where he is and you’re always going to butt heads.
Speaker 1: Right And for those who kind of, over the years I’ve had kind of a lot of parents kind of poop who the idea of sitting down to do a vision statement because it’s, it seems so formal, right To sit down as a family and say what is our vision But it’s important to note that if you don’t create a vision for your child, someone else will. So you know, if you want to, again, it’s up to us to create the vision because if we don’t do it, someone else will. All right, let’s move on to Emma. How do we respond if a special ed coordinator is telling us that having something written into an IEP will track my child, both me and my child. I think if you want to talk about IEP specifically, I, I think that, you know, if our, if our child, all our kids, if they lack skill sets, you either have to teach the skill or you have to accommodate for them not having the skill. And you can evolve course accommodate for the lack of the skill while you’re teaching the skill.
Speaker 3: yeah, she wrote that again
Speaker 1: a little more. Oh, she did Yes. Both me and my, she, she, she explained a little, M explained a little more. Okay. I see it now. Charleston, he needs frequent movement breaks. Okay.
Speaker 3: And I requested that be written into his IEP.
Speaker 1: Sorry, I requested that. Yeah. And I don’t ever, I don’t ever believe that, that a child should have to earn sensory breaks because the day that he needs the breaks, the most is the day that he’s least likely to earn them. so that just makes no sense. and you know, as with anything, you know, ask for it in writing and follow up with a pwn. I
Speaker 3: think so too. I think that, I think that in this case, those movement breaks are part of getting your child to that next level. And so to leave that up to chance, because go back to your original, setup through this morning, Lisa, we don’t always have control of our kids’ environment. And if that’s not written in and you’re not in a pitcher, you don’t know that that’s happening. So in that case, I would, I would fall away from that special ed coordinator and say how important that is to have, to have to have assurance of that. Right.
Speaker 1: And I would say anything I, for me, it’s a red flag. Any time the school gives you the, well, we have to do this because there aren’t a whole lot of half Foos in IEP. and I have found when it comes down to it, schools can do anything. when it comes to IDPs, if they want to offer it and put it in there and do it, they can. and I’ve seen a lot of really great creative things happen over the years and it’s not, I don’t mean that to be as a negative thing. So when they, when they kind of threaten you with it, you’re going to get trapped. We have to do this. that to me is a red flag and because there are no half twos IDPs are living fluid documents that can be changed at any time. so at any time, if your child develops coping mechanisms where he doesn’t need sensory breaks, you take them out of the IEP. It’s not so, all right. So let’s move on to Carol. Ann daughter has down syndrome and therefore her label is very visible. We know that, once we went into J H J H junior high, late, and the secretary assumed soon her teacher was alive skills of course, don’t, you know, all kinds of down syndrome go to life skills you, no one told you. so my daughter said no, I have social studies. So the general public also contributes to this.
Speaker 3: I have to tell you my son’s, disability is visible as well. And so I completely understand Carolyn. Like my heart goes out to it cause I, I, I described in the book so many situations where he’s judged based on parents.
Speaker 1: Mine was a helmet. So there you, yeah.
Speaker 3: And so the general public will contribute to that. But that’s one thing I had to teach my kid. It sounds like your daughter, you go girl, whatever your daughter’s name is, because she advocated for seven. So, no, I’m in social studies. I don’t know where you’re, what you’re thinking, but I’m in social studies and that’s kinda what I had to teach my kid is that people will continue to miss, underestimate you. And it’s your job to keep proving them wrong. And there are never stories in the book about, you know, how he is addressing the data over and over again. And I said, you just have to keep back getting back in there and showing them who you are because your number by junior high, we don’t get to, we don’t get to control everything anymore and certainly in high school or in college.
Speaker 3: And so I realized he was going to be around people who were going to lower expectations for him, say he can’t keep him on the outside and that he was going to have to be the one to self advocate for that because I couldn’t be standing over him. So whatever you taught your daughter so far, speak up is exactly right. And the honest answer is you’re gonna have to keep teaching her to do that because my son has had had an experience of it this past year, even as a college student who was in a a summer internship. And, the woman, one of the women who helped him get, who served as a reference, but it’s internship said to me, well, you know, she hadn’t, she hadn’t really talked to him. She wrote this, this recommendation, but I’m talking to later, not in this internship and said, well, you know, well, you know, it misrepresented himself in the, in the, in the, application. I said, what do you need Well, I have to do is look at them and know something’s wrong with him. How would you like to hear that about your kid And I, and, and, and so those kinds of things will continue to happen. And your child, unfortunately, we responsible for schooling the whole world. Yeah. And good for her. Yeah.
Speaker 1: Yeah.
Speaker 1: I thought I had something, I just derailed my own train of thought. Oh no, that’s fine. Oh, I know what it was. And it’s, you look, and it’s just something I noticed this year. If you buy girl scout cookies and I don’t think it’s girl scout cookie time anymore for you. I noticed as I was eating an entire package, myself, that if you look on the side of the package, it says like what your money goes to when it says that the girl Scouts, but the money raised by cookies goes to teach girls valuable life skills. And I thought what a nice change that, you know, the word life skills doesn’t have to be a bad, like we all need life skills, you know, or somehow it got this negative thing thrown onto it that you are less than or and I get it cause my kid isn’t an entire life skills program.
Speaker 1: but that’s not necessarily a bad thing but thanks for sharing that. and so was that okay, under Stacey again, what is the, and I love this question cause it’s one of the school’s high expectations and this is causing the child to shut down. Oh are you there Stacy Can you see me Are you talking about me Yeah, sorry. It just disappeared for a second. Okay. No, my screen black for like a second. I’m, and I’ll let you elaborate on this, but I would say that it’s not the high expectations that are causing your child to shut down. It’s the either lack of support, lack of interventions. It’s either the wrong supports, wrong interventions, it’s not the high expectations necessarily. if, if those expectations are reasonable, it’s the lack of supports to get there around them. Yeah, I would
Speaker 3: totally agree. And Stacy, you know, I’d love to hear more about what’s going on. I invite you to, we’ll tell you at the end of my, my Facebook and my email and my website that I’d like to hear more about that. But I will, I will say, I will say again, it isn’t what we’ve learned over and over again. If we set our expectations, high kids will move toward them. That’s general, that’s regular ed, that’s everybody. But to Lisa’s point, if the supports aren’t built around that, that’s where the frustration is. And I’d like to hear more about who’s around your child, who are the significant adults in that school who are influencing your child. There could be a whole myriad of things. And I’m wondering if that, my guess is, it’s less the expectations than all those pieces around your child. And I’d love to hear more of your story because I don’t think we can diagnose it here, but other than to say it’s not the expectations themselves,
Speaker 1: if the expectations are reasonable and you know that as, as a parent, you know, I mean there are, you know, I’m not going to be my son. My other son told me, not too long ago that I’m too old to be an NFL running back. because you know that that’s the only thing holding me back from an NFL career was my age. but you know, if you put the expectation on me to be an NFL running back, that’s not, that’s not a reasonable explanation. but it could be the supports and services as well. Absolutely. Shannon wants to talk about exiting, and having a one-on-one para. I love this conversation. I do cause, yeah. Yeah. So she said, yes, we plan to exit. yeah, I will say I, I worked with kids,
Speaker 3: for many years with significant challenges and that the notion, the notion that our student, our kid needs that same one on one person can be very debilitating. And, and the reason is is because we learn and our kids teach us, teach us then in subtle ways that by only performing for that person that that’s all they’ll do. And then we come think, Oh they need to be with that person. And the fact is is probably right with what they need right then is a little less, maybe when they’re with that one on one, that one on one is meeting all their needs and responding right away and is maybe there’s less tantrums, maybe there’s less embarrassing situations. I know this happened with my son, you know, food is dribbling down his throat or hands are in his mouth or whatever. Maybe it’s less embarrassing.
Speaker 3: But in the long run that that dog had kind of connection to the T to a single one on one person actually shut shortcuts. I will argue all day long that shortcuts a lot of skills. And behaviors that kids need to at least try on at least try on it. I’m not saying, I’m not saying there’s no need for one-on-one ever. I know there is, I worked with dozens of kids that there is, but the idea of getting our children to be flexible to who they’re working with doesn’t have to be the same person and gradually, and having the ultimate goal of always moving beyond that one on one has to be there or that becomes a cell phone.
Speaker 1: Right. And I would say, I’m a huge fan of getting everything defined in your IEP, including your aide or para, whatever you’re referring to her as her duties and responsibilities. So I think you’re just going to have to look at each one one at a time and say, what is she doing for this child Should she be doing that for the child Can the child do that on their own And how can we begin to fade that skill And kind of like, of course, and able bodied adult with more life experience, more life skills. Their skill set is here and your child’s is here, right So you need to start to get them to match, and enabling your child to do, you know, again, pick apart each skill. One of the times they, what is she doing for him and how can we get my child there and begin to fate her and, and again, either accommodating for the skills or teaching them the skills. Andrea, my child needs both life skills and modified grade level instruction. How can I get the school to pivot That’s, that’s a great one. Cause we just want to put kids in one bucket or the other, don’t we Right. No. God forbid somebody be half of each or both. You know, we can’t, we can’t have that. You have to be either in life skills or gen ed. There’s no in between.
Speaker 3: Then I have stories, stories in the book about that too with my own child. And I have to say that oftentimes when you get a label and pushed back loose if you disagree, but sometimes with some school districts, especially if they’re wealthier, you’ll get a suite of suite of services comes with your label here. You get all these things. It’s almost like the bundle cable. I don’t know if I need to ESPN the old show, you know, I don’t know if I, just, because all those services are offered to me does, it doesn’t necessarily mean those are the best thing for my kids. And so I, I hear that in your question and Andrea that that Hey, just because they have a high need in one area and a low need in another area or a very different kind of need in another area doesn’t mean we take that whole package.
Speaker 3: And that means looking at each area separately and saying, this is, this is what will give my child maximum independence in this area. Maybe English language arts, but in mathematics, this is what, this is the kind of instruction I need. And, and you’re right. And I think the only way to do that again is by, and I say this, it sounds like a euphemism or a platitude, but walking alongside with the key people on your IEP team to explain that he needs this here and he needs this here. And I find by butting heads with folks, I rarely got what I wanted, but by being able to make, to make that point, look, this is what he can do here and this is what he can do here. That I got more of what I needed. So I can’t tell from your short question. I’d love to hear more from you too.
Speaker 3: where, where are the, where are the areas where the life skills were important and where the real high, verbal comprehension was I’d love to hear it because your child sounds fascinating because I’ve worked with kids who had extremely high, oral comprehension, but yet were really low in other areas. So I don’t know quite what your son’s issue is, but certainly it’s it disentangling, exactly what your kids need, your kid needs from that kind of overarching, Hey, every kid with this, this label gets these things because not a one size fits all.
Speaker 1: Great. And I think also, some of our kids have so many needs that you do have to prioritize. And you know, all of my child’s needs and educational needs, life skills can not be addressed. He’s in normal times. He’s programmed every day from eight to five 30 and that is literally a full time job and there’s still things that we don’t get to. so I think, you know, I think that you have to just make some choices and for me what I passed on at this and his inclusion and that he is in a very small setting, a very restrictive setting. and the reason being so that he can focus as much time as we need to on what he needs to learn and inclusion. We do on our own time with his brothers unit, with his brother and family and our neighborhood. And things like that. And that’s where, you know, I make sure that he gets included in our community. it’s not during this
Speaker 3: all day. so absolutely. Hey Lisa down at the end and I want to get the other questions too, but I’m clarified. He said he understands, I love your kid already Andrea. He understands geo geopolitics but can’t tell time. You know, I think that’s, so actually my kid was like that too and I will say on on that piece sounds like if he has a passion or interested in that area, I would go for that in other ways as well. In addition to with your IEP team, cause I have a lot about the book about, about leveraging natural curiosity to actually engage your kids. Kids, you may even go for other opportunities he might have, I don’t know what age your kid is, but to be involved with things he loves even though he needs life skills around telling time. But, but if he’s, if he’s savvy to those, those really subtle concepts, then I would figure out other ways to do podcasts or small groups of kids who are interested in that too, to involve him in those things. Why am I on my own
Speaker 1: Okay. One more because it’s been on an hour and that’s Stephanie. How do you make the jump from moderate to severe to a mild, moderate class setting I know what I would say about that. and again, this is an IEP and parents are as guilty of this as are the rest of the IEP team and that we jumped to placement first and placement is actually the last decision or shouldn’t be the last decision in the process. And that you look at the child’s needs, you develop goals based on those needs and then you say, okay, what does the child need to get to those goals And then you look whole package and what setting is best suited, what placement is best suited to implement that IEP
Speaker 3: absolutely I would, I was gonna say that if you didn’t say it first. It’s like the classroom, the placement is a bucket, you know, the bucket and I don’t like those buckets. I actually worked on the early childhood inclusion project for the state of, for New York city. And the idea that you know, that there’s that because the kid has this thing used to be here. Kids are so multidimensional, but so by starting with your kid’s needs, it’s like he should only be in a moderate, severe classroom if he has needs that require that. So if you’re showing that he’s doing the kinds of things that are happening in these other settings, then then, then there’s no forgone cooking. There’s never should never be a foregone conclusion that because of a label or diagnosis, he’s automatically in the moderate, moderate, severe as opposed to the mild, moderate. And I think for me it took showing the teacher in the, in the mobile handicapped preschool, showing in elementary what my kid could do for them to see,
Speaker 7: okay,
Speaker 3: this is what he needs. This is what he’s doing. This is what his needs are. His needs aren’t met here. His needs weren’t well-served in the moderate, severe class where he was waiting, where people were talking with, telegraphic speech, like get ball. I felt he needed, I felt he needed rich language, not, not telegraphic speech, which is fair. And certain kids based on their needs need that. And that’s absolutely right. But it didn’t fit my kids’ needs. And I think that’s what Lisa is saying is how do you make that jump For me it was showing teachers and the team that his needs were not a match for that classroom.
Speaker 1: We have, Oh, sorry, we’re over. That’s fine. No, supports and services drive placement. It’s not that placement drive services, services, drive placement. and to put that in plainer language, I had a client not too long ago and I still am still working on drilling this into her head because she’s unhappy with her child’s placement with a lot of aspects of her child’s placement. And she says, she keeps saying to me, the only reason I wanted him in this placement is because of how many weekly therapy hours he’ll get there. And I keep saying to her, if your child needs that many weekly therapy hours, that’s what they need. And that’s what they should get in their placement. Like you don’t put a child in a placement to get the therapy hours. You get it in the IEP that they need, the therapy hours. And then you say, okay, what placement is best suited to implement this many therapy hours in a given week I hope that your
Speaker 3: point on that though, I know as a parent you get caught in that because if you have more children, you have them. I had four children. I thought same thing happened to me. I thought, Hey, if I put them in this self-contained multiple handicap, they’re bringing in OT, the PT, the speech, all that, you know, it’s like a one stop shop and you’re human. We’re human too, right. Understanding exactly what Lisa said. And it caused me to do the same, have to remove him. I said, I’ll have to get that therapy other places because it wasn’t a match. So I think your example, doesn’t rings true to me. And anytime you go down that path, you’re gonna by letting the placement lead. You’re gonna you’re going to run into problems and you’re gonna run into unhappiness because you’re going to have that match.
Speaker 1: Right But if you envision your child, any certain placement, it’s just in your head. You have to define it. What are they doing there that my child needs And that’s usually we can get there. It’s just, what are they doing in that placement that your child needs Why do you like that placement Cause that’s what I hear from parents, a lot of why I like this placement or like that classroom or like that. Okay, great. What is it that your child needs that they’re doing there that he can’t possibly receive in a less restrictive environment
Speaker 3: Absolutely. Absolutely. Absolutely. It’s being able to read that.
Speaker 1: Alright, well let’s wrap up. Tell us about your book. Tell us where to find it and all that other fun stuff.
Speaker 3: Yeah. I guess what, I really enjoyed it and thank you so much Lisa, for having me on and just, just being able to talk from the heart about some of these things. I love the questions. Anybody that was on, I’d like to invite you to my website, which is high expectations, parenting.com. there’s a place there to sign up to create order the book, anybody who signs up,
Speaker 6: Mmm.
Speaker 3: From a day in our shoes from listening from your website, what I’m going to do is grab some names and provide folks with maybe two or three free books from folks who sign up for my parenting tips, which come out regularly. also my Facebook page, capable. The book, tells more about when it will be released. I’m real happy. I will just end by saying I’m really happy that I just, I have not, it is not published yet, but I did just get a, endorsement from Gary Chapman, the best selling author of five love languages, if you’ve heard of him or his work. and he’s, and he’s, really, given me a great endorsement that I hope will catch the attention of, of publishing houses. So I’m hope. Look, stay tuned for a pre-publication of publication announcements. sign up on my website, I expectations parenting.com, and we’ll get at least three books, three, three books out to, three people who sign up.
Speaker 1: Okay, great. And I will have all this information, all the links for Facebook page and everything. As you know, I gather it all up and I send it all out. So I will do that, today or tomorrow. But other than that, have a great weekend everyone, and thanks for joining us.
Speaker 3: Thank you.
Speaker 6: Bye. Bye.