Other People's Words

Interview with Dr. Paula Kluth about inclusion

Posted in Uncategorized by Tera on August 1, 2010

This is a transcript of Autism Women’s Network’s interview with Dr. Paula Kluth about inclusion.

[Music]

Sharon daVanport: Good day, everyone, and welcome to AWN radio. This is the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport, broadcasting from the Midwest in the United States. Today is Saturday, July 24, 2010. Joining me now is fellow host, Tricia Kenney. Good morning, Trish.

Tricia Kenney: Good morning, Sharon. How are you?

Sharon daVanport: I’m doing well, thank you. Just getting ready for my trip to Washington, DC. My flight leaves first thing in the morning, and I’m getting excited about Washington.

Tricia Kenney: Oh, I’m so jealous. I want to go.

Sharon daVanport: My stomach is just flipping. I’m just really excited. For our listeners, I just wanted to let everybody know: AWN received an invitation to the White House to join President Obama in a celebration of the 20-year anniversary commemorating the Americans with Disabilities Act. So I’m going to be going, representing our organization. And we’re just so very excited that we got invited back to Washington.

Tricia Kenney: Yeah, and so quickly, too. It’s like: “Wow! Okay, this is awesome.” [Laughter] I’m very proud of AWN for the strides we’re making, and so proud of you, that you get to go there and represent us.

Sharon daVanport: Thank you. I’m just very, very excited to go, and excited to see our AWN DC liaison, Lindsey Nebeker. I’ll be staying with her and Dave, and I’m just very excited to be able to visit with them again. We’re actually going to be going out having dinner on Tuesday evening with Robin. You remember Taylor Morris. She was a guest here. They’re going to meet us in DC, and we’re going to have some dinner on Tuesday evening with Taylor and her mother, Robin. So we’re very excited about that as well, to finally meet them in person.

Tricia Kenney: Wow. That’s going to be really great.

Sharon daVanport: I know.

Tricia Kenney: Well, today’s guest is Dr. Paula Kluth, and she is a consultant, teacher, author, advocate and independent scholar who works with teachers and families to provide inclusive opportunities for students with disabilities. This is a subject near and dear to those of us with special needs children, and an often difficult decision to make. So we’re really looking forward to Dr. Kluth’s input here today.

We do also want to remind our listeners that we have two contests going on every month, here on AWN radio. We have the monthly prize giveaway from LifePROTEKT and we’ll tell you more about that later in today’s show. But today we are going to be drawing the name of a lucky listener for a prize giveaway, compliments of our AWN radio sponsor, b-Calm Sound.

Sharon daVanport: And that’s going to be very exciting. Curtis from b-Calm Sound, he’s been with us before, and he’ll be joining us at the end of the show after we do our interview with Dr. Paula Kluth. He’s going to be with us when we announce the name of the lucky listener who’s going to receive two [unknown] packs of b-Calm Sound’s Audio Sedation MP3s. So that’s going to be exciting. I know that everyone who’s won something so far from b-Calm has just been really, really excited and very satisfied with their product. And Curtis has more to tell us about some new products b-Calm has to offer, as well.

Tricia Kenney: Yeah. I’m interested to find out what that is. All right, well, let’s go ahead and welcome to the show Dr. Paula Kluth. Hi, Paula.

Dr. Paula Kluth: Good morning.

Tricia Kenney: How are you?

Sharon daVanport: Hi, Paula.

Dr. Paula Kluth: Hi. I am doing great; I’m very excited to be with both of you today. Thank you for having me.

Tricia Kenney: Oh, it’s our pleasure.

Sharon daVanport: Thank you.

Tricia Kenney: We’d like to start out with finding a little bit about you. Can you tell us a little about your background?

Dr. Paula Kluth: Sure. I am a former professor of education; I’ve sort of left academia to do the work that I’m doing now. I’m first and foremost a public school teacher. I was a teacher in significant disability in the initial part of my career, and then later on went on to study inclusive education and differentiating instruction and supporting kids with disabilities—also a little bit of policy.

[I] took my first academic job at Syracuse University and did that for a while and really enjoyed doing teacher education. But I really, really like to be out in the schools and working with teachers and getting to do various projects of my choosing, so I decided to go out on my own. For the last several years, I’ve been working with teachers and family organizations and [done some?] consulting and research and staff development. I’m really trying to push forward agendas around inclusive education and differentiating instruction for all students.

Sharon daVanport: Wow. You are very busy. [Laughter]

Dr. Paula Kluth: I am. I have two littler girls myself. My first child started kindergarten this year, and it was really interesting being on the other side of the teacher’s desk. My children don’t have any identified needs at this point. I’ve said it for many years, but I saw from a parent’s perspective how important inclusive education is for kids with and without disabilities. I saw how important this idea of personalized education is for every child: that every child needs something different, and that schools need to be welcoming and comfortable and responsive for everybody.It’s real affirming to see that I felt the same way as a parent as I did as a teacher.

Sharon daVanport: Well, that was probably good for you—a good experience to have that life lesson, to see it through the eyes of the parents that you’ve worked with for so many years yourself.

Dr. Paula Kluth: Definitely.

Sharon daVanport: I became aware of you when I attended my first ever autism conference several years ago, here in Nebraska and you were a keynote speaker here for our conference. You are a wonderful motivating speaker. It was a changing experience for me to hear your talk on inclusive education. Up until that point, even though I had a son in junior high at the time who was special needs, I did not view it the same way.

I was in fact a little misguided and had a pre-conceived notion of what I thought inclusive education or inclusive classrooms were until I heard your talk. So that’s really where I wanted you to start, when we get into that in just a moment. I want you to be able to help our listeners understand what exactly is inclusive classrooms and inclusive education. So could you start there?

Dr. Paula Kluth: Sure. First of all, I think you’re right. I think that a lot of people think that inclusive education means….I think the first misconception is that inclusive education is about disability. As most of us in the field of inclusive ed see it, it’s actually about every child. Inclusive schools are schools that challenge the status quo, that seek to make classrooms responsive for every kid, regardless of your gender, your ethnic or cultural differences, family differences. If you come to school, you have regional differences because you come from a different space in the country and this is a new place for you, for kids that are newcomers in that sense.

Inclusive schools are responsive to any kind of difference. Kids who have different kinds of body issues; kids with disabilities, of course, fit into the same model, but we want to make sure that schools make every kid feel appropriately challenged and safe. We feel in the field that you cannot separate inclusive education from other reforms, and that it’s not about a few, but it’s about all. So that’s the first misconception, is that people that are advocating inclusive schooling are thinking only about some. We’re really thinking about everybody having a great schooling experience.

I always use this reference, that when you ask people: “How many people go to their class reunion? How did you feel in high school?” an awful lot of people say: “I would never go to my class reunion. I had a terrible high school experience. I felt so isolated in junior high. Boy, my fifth grade teacher didn’t get me.” So it isn’t just people with disabilities—a lot of people didn’t feel like they had the support they needed. So inclusion is about really helping to think about every learner as an individual, and every learner as valued. So that’s number one.

Number two is that when we’re thinking about disability in this model, a misconception is that we bring a kid into a space—or, as I say, the real estate of the inclusive classroom—and we wait to see if he can make it. If my child is very different from other kids, then probably inclusive ed isn’t appropriate for him. I don’t want to just speak for myself, because there’s an awful lot of people that have come before me and that I work with now. The inclusive ed movement, I think I can pretty safely say most people feel this way.

[We feel that] inclusive eduction isn’t about the real estate. It’s not about the space. It’s about the work we do every day, and it’s about constantly revisioning kids’ educational experiences and trying to make a nice fit for everybody in the classroom the best we can. If inclusion doesn’t work for you, and the range of supports that we put together doesn’t work for you, then we have to revision those supports.

This is then something active. Sometimes you have a kid with autism, and you give him a paraprofessional and you adapt the math curriculum and you provide a visual support, and that works beautifully. And then then next year, maybe you get a new kid with autism and you provide those same supports, and none of them work. So you have to think about: “Maybe a paraprofessional isn’t needed, but maybe we actually need to push in OT. And maybe we needed another kind of therapy. Maybe we needed this kind of consult.” And then you try that, and maybe that’s not quite the right mix.

And so I tell teachers: “Don’t quit five minutes before the miracle happens.” For a lot of these kids, it’s just a matter of finding that magic blend. And when we find the magic blend for one, we often find that the supports that we create help so many other kids in those classrooms. So it sounds maybe more complicated than it needs to be. For many kids, just the access and giving a few things a chance are enough. For other kids, we might need to keep stirring that pot.

But I find that a lot of folks think that it’s up to the kid to make or break it, and that if you look very different, if your goals are very different than other kids, that means that this place is inappropriate for you. When people tell me: “We tried inclusion and it didn’t work,” I always say: “What was ‘it’?” If you’re telling me that these five supports didn’t work and you gave him a piece of real estate in the inclusive classroom, that’s not inclusion. Inclusion means that you’re going to have to play with this. It’s a process.

The other thing I like to say about this—I don’t mean to be so wordy. I also feel strongly that there’s a misunderstanding that the needs of these kids with disabilities are too different than their peers, so how can we make a match there? Having taught in almost every environment that you could possibly imagine in special education and so on, I can tell you that the classrooms I’ve been in where kids have the most diverse, different learning profiles from one another are special ed classrooms.

We have those same issues in special ed classrooms. One child has severe disabilities—no volitional movement, is not ambulatory—and the other kid is running around and is verbal, has lots of ability to move, talk, share and interact We’re trying to educate him alongside another kid who may have significant communication problems. Those needs of those kids are often very diverse, too. But the fact of the matter is that, for the kids that I think about most often, their needs are just very different than the needs of their peers. So no matter where we educate them, we have to do a lot of brainstorming. A lot of the kids I work with don’t look at all like their peers with the same label. I always say: “If you know one kid with autism, you know one kid with autism.”

Tricia Kenney: Right.

Dr. Paula Kluth: So I think this idea that if we just…I don’t think it’s always easy, no matter where we educate kids, but I’m saying: “Just bringing together a bunch of kids with the same label doesn’t necessarily mean that you’re going to use anywhere near the same curriculum. Those kids are very different.” So the idea that: “Couldn’t we just pull these kids over because their needs are so similar?” has not been my experience. So no matter what we do, we have to figure it out.

Sharon daVanport: Right. What are some of the benefits, Paula, for the other children in the classroom? What are the benefits that they get from it, and what are some of the rewards that the entire class reaps from being able to have the successful transition into an inclusive classroom?

Dr. Paula Kluth: How long do you have? [Laughter] That’s my question.

Sharon daVanport: Okay. [Laughter]

Dr. Paula Kluth: My own daughter, I use my own child as an example. Some of the most simple things. My daughter had an experience in the last couple years getting to learn about different kinds of assistive technology, which, for a lot of kids is really fascinating stuff. Learning how to communicate differently. My daughter’s English-speaking, but she’s learning Spanish, and a lot of parents will do a lot to get their kids access to another language. It’s seen as something really good for the brain. So kids in inclusive classrooms oftentimes get to learn not only about using augmentative communication, but sometimes get to learn bits of sign language and other kinds of ways to express themselves.

Kids also, I think, get to learn about their own learning styles. One of the classrooms I work [in, it’s] middle school. One of the supports in that classroom is a great big sensory box. The rule for the sensory box—it’s got a weighted lizard and Koosh balls and rubber bands for the bottoms of the rungs on the chair that you can bounce your feet on and these kinds of things. So the rule is, if one kid gets to access the box, everybody gets to access the box. There are rules, and the OT guides it, and so on.

But those kids are so aware of their learning styles, their sensory needs. I don’t mean just kids with autism. You can walk in that classroom, and I’m telling you, it is likely that five kids may have objects on their desks and none of those kids may have autism.

Tricia Kenney: Right.

Dr. Paula Kluth: You may have kids with autism sitting there looking great, doing their work, and then five other kids with Koosh balls and weighted lizards. [Laughter] And you think: “Oh, who’s got a disability here?” So these other kids will say things like: “Zach has the headphones. I need headphones.” You say: “Do you really need headphones?” “I do!” “All right. Okay, Charlie, go out and get them.”

[Laughter]

And sure enough, the kid’s good as gold, and you think: “Okay. Guess what? You do some of your best work when all that auditory stimuli isn’t coming at you.” And then you hear this middle school kid saying: “I do do my best work when all that auditory stimuli isn’t coming at me.”

I was 35 before I knew the conditions in which I worked best. I would think: “Well, all the professors work with their doors closed in a quiet room. That must be the way to do it.” And then finally I realized: “No. I work best in my home with my TV blaring, in my slippers with a radio on.” And I thought: “Wow. I just never thought that was normal.” But that’s what works for me.

These kids are learning not only at a young age what works for them as a learning style, but how to advocate for themselves. So being in those classrooms they have not only access to those supports, but they are learning about how they learn. Further—and, again, using that classroom as an example—these students just have access to differentiation in ways that other kids don’t, because of these peers.

The principal of the school said to me recently that he was [an ex-principal?] from an inclusive school, and this is somewhat new to him, actually. So he told me proudly: “Look, I went to my graduate class. And they were discussing differentiation, and they didn’t really know quite what it was, and I raised my hand. They kept saying it was about adjusting this and having a policy at your school.” And he said: “No. It’s about what you do every day, making it work for individual kids.” He said: “Just at my school, there are 27 ways to sit down. That’s differentiation.”

Sharon daVanport: [Laughter] 27 ways to sit down.

Dr. Paula Kluth: He went on, and he was talking…The school prides itself on it. Again, you can walk down the hall of that school and there are kids sitting down on bouncy balls and stadium chairs and lawn furniture. You don’t know who has a disability and who doesn’t. I don’t mean that because of how somebody looks. I’m just saying because of who is accessing the materials.

Sharon daVanport: Right.

Dr. Paula Kluth: I’ll give you another example [from] the school I’m in. A lot of the kids are very reluctant writers. Their writing scores are not great [chuckle]. So they’ve brought in some different technologies, including, more recently, iPads, but also a couple of AlphaSmarts, which are little tabletop…kind of like a computer without the…you can actually print them off, because they’ve changed. But there’s a little display.

So one of the writing stations, kids can use the iPad or the AlphaSmarts. They fight over them, they want them, because for a lot of kids with motor planning problems or LD or just reluctant writers, it’s a little more interesting and we get more fluent writing at that station. So those supports are possible because we pooled our resources. We said: “Special ed and general ed are no longer do this business where ‘It’s mine and yours, but we’re going to have it ours.'” And so they bring these materials together and now all kids can access them.

And I’m not even going into the social, the affective benefits about the culture, and what the culture can look like. I know kids can have respect for difference and so on and so forth. But when you’ve got kids with disabilities in your school and you normalize disability and you say: “This is how we do things around here,” that gives kids permission to be themselves.

Sharon daVanport: Right.

Dr. Paula Kluth: I’ll give you an example of another school that I consulted with. They were going to do the National School Inclusion Week, which is in December. There’s some little activities that are online, and you can celebrate difference, and so on. You can talk about inclusion, disability awareness. But this school said: “We’ve been doing inclusion for a while, and we don’t think that the kids will know what inclusion is. It’s just been going on for so long, we don’t think that they have a name for that.” [Laughter]

Sharon daVanport: It’s a way of life for them.

Dr. Paula Kluth: Right. So that’ll be kind of a weird thing. So the principal and the AP and the parent committee came up with this thing called Unique Week. They made little buttons, and the buttons say: “Great minds think differently.”

Tricia Kenney: [Laughter]

Sharon daVanport: [Laughter] Right.

Dr. Paula Kluth: So it becomes about all the kids. In other words, the kid who is marginalized because he’s a skinny little quiet kid and he’s so painfully shy. Or the kid that’s marginalized because he has two moms and nobody knows about that at his school. Or the kid that’s marginalized because he’s the only Puerto Rican kid, or the vegetarian or whatever it is. This is a catalyst for having a conversation about uniqueness.

Sharon daVanport: Wow. That is so nice. We’ve got a lot of chatter going on over on the chat board for our radio show. I wanted to just share with you some of the comments. Miriam’s saying that she’s been following your work for years and she really admires what you do, Paula. She says it’s changed her and her family’s lives, just having access to your material.

Dr. Paula Kluth: Oh, my gosh.

Sharon daVanport: She’s so glad that you’re speaking here on the radio show today. Then Miss Terri agreed with her. Miss Terri made a comment that it’s just so very hard to get school districts to “get” what you’re saying. To do it. To really understand what inclusive education means, and the benefits that it has for everyone. I hear that a lot, too. But when you say it, it sounds so simple. It just sounds so easy.

One of my favorite stories—I want you to share this with our listeners today—was one that you told during your talk that I heard here in Nebraska when you were at our conference. You have a book called Just Give Him the Whale!, and you tell this story behind it. Can you share that with our listeners? I love it.

Dr. Paula Kluth: I will. And actually, would it be okay, after I share that, to go back to the issue about how to get schools—?

Sharon daVanport: Why don’t you share the story about “just give him the whale!” later? Why don’t you just keep on with that? Do the schools?

Dr. Paula Kluth: And then we definitely will talk about it. Only because you’re right. I hear it all the time, and you hear it all the time. We know it’s probably one of the bigger issues. “This sounds great! Where do I sign up?”

Sharon daVanport: Right.

Dr. Paula Kluth: So one of the things that I tell parents…If you’re a teacher listening, there’s some things that teachers can immediately do: work with their administrators. They can say: “How about me? How about tomorrow? We could go in to our special educators, our general educators and say: ‘Let’s work together.'” So there’s lots of things.

But if you’re a parent, it’s kind of like: “What do I do?” I found myself in that boat this year. My district is not unlike other districts, where we’ve got things going on. But like anywhere, you can always do more—especially if you have parents around who are very energetic about this. Let’s bring it up a step. So one of the things that parents can do is, to [coalesce?], to start, is, of course, to go to your districts, to make a little bit of noise. To start asking some questions, to offer support. I love the director of special ed—and that’s an administrator I know the best—I think he’s great. But I think our administrators need our help; they need to know that there’s parents behind them.

So things that we’re doing in my district, if I could just put out a little [laughter] plug for my little group, I’ve just started a parent advocacy group in my village called The Oak Park Inclusion Network. We have a handful of members, and we just put a little page up on Facebook to just get energy going. But we’re going to try to get some money and bring in some speakers. We’re going to try to give the teachers some gifts that will help them with inclusive ed. We’re going to try to work with our administrators in any way that they need us to, to get the word out. We’re going to try to do maybe a little film festival. So we’re small but mighty now.

But that’s something parents can do. A lot of parents, what they do when they’re seeking these things, is they have a Down Syndrome group; they have an autism group. They say: “Well, I’m already a member of my local special education parent group.” And I hate to give people something else to do, but one thing I have found when I have been on the road and worked with grassroots, is that if it’s inclusion you want specifically, the places where parents are most successful is where they get together as a group around inclusion.

So since we’ve started our little group, I’ve seen that there’s one in Madison, Wisconsin. There’s one in New York City. It’s the inclusion network for the parents, and they get together around that single agenda issue. They try to work with the administrators to say: “What do you need? Let us help you. We want to help you. Let the school board know that we’re here. We want to be visible; we want you to know how many of us there are that are interested in this.” Otherwise, administrators, there’s a lot on their plate and we want to be positive. We want to work with them. That’s one.

Running for school board’s another idea. If you know someone, if you are someone, if you can cajole a friend [laughter] in your support group, that’s where a lot of decisions are made. That’s who hires superintendent. That’s who fires people [laughter]. That’s who creates and adopts policy and curriculum. So maybe that’s not for everybody, but somebody may know someone that’s interested in that.Other places: parents might simply come together as a group and work within their own PTOs or PTAs and just start from there, celebrating National Inclusive Schooling Week and say: “Hey. Is anyone going to do this?” “Hey, five of us are willing to do this.” Get the conversation started.

So, yes, it can be done kid by kid, but that’s no way to make social change. [Laughter] If that’s how people have done it so far, God love them. That’s how people have been doing it. But we want to make sure that, if there are more than one family ready to go, hold hands and move forward together. That’s my recommendation there.

Tricia Kenney: What do you do with school systems or school districts that already have a very stringent policy in place? Here in the public school system for kindergarten, first and second grade, if you have an autistic child, they are automatically put into an autism classroom.

Dr. Paula Kluth: Okay, well, that. On a beautiful Saturday morning I hate to sound so negative, but that might be a legal issue. It sounds very much like a legal issue to me. So that would be an issue where, in part of that dialogue, you would want to come with good information. What the spirit of the law, for listeners that don’t know, is really that, first of all, it needs to be an individual assessment for kids. So right at the very outset of that question, where we’re saying: “Oh, you have this label. Here you go,” that becomes wobbly when you start talking about having a foundation there.

The second issue that’s suspect is this idea that something’s program-driven. So there’s actually a case that’s often-cited in these kinds of situations, where if you can show that services can be provided elsewhere with the same…Basically, those same supports and services can be provided in an inclusive education experience, for example, with the same outcomes and with the same level of success, then you need to provide them there. That’s the less restrictive environment. So you can’t just say: “Because he has autism, therefore.” That’s been made quite clear. So I think those issues, you want to have a conversation with the district, bringing some of those materials forward and just asking some pointed questions.

I did an article about this, which is now admittedly dated. You can probably still find it on the Web. It’s called “We Don’t Have Inclusion Here.” I wrote it for Ed Leadership magazine, and it was taking on some of these very same arguments: Kids were automatically going to programs, or if you’re in this particular district and you have Down Syndrome, you automatically are in this level. Those kinds of things are questions that the courts have taken on. So, yes, it’s evolving when you look at the law year to year. I’m not saying: Bring three lawyers and a tape recorder. But this is where knowing your rights is very important.

Again, I keep going back to having more than one person going in to ask those questions is helpful. So when you have three and four and five and six and 10 and 20, and a small organization that comes in and says: “You know, we just had a guest speaker who’s worked some of these cases and we’re really concerned about this model.” But I think going it alone—it can happen, but I think it’s one of the hardest ways to do business.

Sharon daVanport: Right.

Dr. Paula Kluth: Now, there are resources for folks that want to learn about these current laws. One of the places that you can go for support [is] your local [unknown] for the states. But [sometimes] your autism society has references for the legal branch. Sometimes you can go to your Arc, and they’ll have some resources for you along these lines.

So those kinds of organizations. And sometimes there’s those parent programs right inside your state that you can go to for guidance or, as I said, they’ll have consultants, or they may have names for you that you can yourself go and ask questions of, or get more information through seminars offered. So it’s good to connect with some of those bigger organizations: National Down Syndrome Congress or the local chapters of Down Syndrome groups. Sometimes they’ve got those links, and they know who is informing parents around rights. Those could be helpful resources to take advantage of.

Tricia Kenney: Right. What if you’re coming from a different direction? You’re a parent who says: “My child has such extreme sensory issues, a regular classroom with 25 students is going to be too much for my child.”

Dr. Paula Kluth: Yeah. I think that the child’s needs have to come first. Again, the issue for me is that I think we often don’t look at the other end of it. I said I’ve been in almost every setting that you could, any constellation of services that you could name. Some of the most challenging places for students with autism to be is with other students with autism.

I’ll give you an example. I was at a board meeting for one of my organizations, and one of the colleagues that I have who has autism began shrieking. I think that he heard something that was…Maybe he heard a siren or something, and he was shrieking. And then the person next to him started hitting their ears, because that was really hard. But when that person started up and started hitting their ears and moving a lot, that really disturbed another person who doesn’t like a lot of movement that’s sudden. And so it was like this chain reaction of people with sensory problems.

In my own experience, I had one student who did some head-banging. He was alongside of another kid who had a challenge around wrist-biting. With those two boys being next to each other, it was not long before both had a head-banging behavior and both had a wrist-biting behavior. Kids really tend to sometimes mimic some of those gestures and things like that. It’s been my experience that sometimes when you’re with other people that have the same challenges that you have—I’m not saying people should never be together. Not at all. But when you have so many people with the exact same challenges that you have, that can often be harder than being with more people that don’t.

There are kids where large classrooms are challenging. I’m just wanting to make the point that I’ve seen instances where the argument’s been made, nd I look at the other environment and I say: “Wait a second.” [Laughter] “This environment’s pretty challenging in itself.”

Sharon daVanport: Right.

Dr. Paula Kluth: So I think in either situation, you have to look at: What is it about the environment that’s hard? Quite frankly, if this child’s going to go on to live in the community and take a bus and go to Denny’s and everything else, whatever problem a child has in large contexts, we need to start solving those issues.

It might mean: “Boy, all these kids around! That’s hard for you from a sensory perspective. Does that mean that you need to wear a visor because the [unknown] of lights is always on and we need to put you closer to the natural light? Are you a kid that needs to wear headphones more often? Are you somebody that’s going to need to have a different kind of seating? We can bring that into an inclusive classroom.” So let’s look at the individual issue and try to solve that, so that you don’t miss out on the richness and the context of general education.

We know for kids, for example, that have a lot of communication needs, they need to be around folks who have a lot of communication abilities. I’ve written a book on literacy and autism. It’s the only book that I know of on just literacy and autism.

What we found in looking at all the studies on literacy and autism is that kids need more than teacher talk. They need to be around other kids and hear them make sense of their reading. They need to be around people who can read to them if they can’t read to themselves, or they can’t access text. They need to be around kids who express themselves in lots of different ways. They need to see other models for writing and reading from same-age peers.

A lot of people will tell me: “We need more and more personalization. We need more and more one-on-one or small group.” What we found in literacy is that the social context matters, big time, and that you need a lot of…that literacy’s about, you read to connect with others, to see what other people say and your right to connect with somebody else, to express yourself. So this subject matter in particular…People always say: “We’ll include him for gym, music and art,” and I always say: “Keep gym, music and art. I’ll take math, social studies and science.”

[Laughter]

Not to devalue those subject areas. I value all of them and I really wouldn’t give any of them up. I’m kidding about that. But what I know know is that if I can solve those problems in a general ed context, I want to do that because I don’t want to give up the richness in those lessons.

Sharon daVanport: Right.

Dr. Paula Kluth: But I know it’s not an easy problem to solve. I’m really sensitive to that, and I know a lot of parents are saying: “Yeah, but I don’t think they’re going to give me all those supports. So then what do I do?”

Tricia Kenney: A lot of schools are saying: “We don’t have the budget to add anything. We won’t add any aides; we won’t have any extra tools in the classroom.” Because a lot of schools, they don’t have even playgrounds, or a gym program anymore.

Dr. Paula Kluth: Right. Well, I’ll tell you what. I almost hesitate to say this, but I’m going to say it, because I think it’s important. I hesitate to say it, because I don’t think this helps parents, what I’m about to say. It’s not something that parents can go out and immediately do. But it is information that I think parents need to have, so I’ll say this. The argument about finances is always an interesting one to me. I just start to salivate when I hear it.

Tricia Kenney: [Laughter]

Dr. Paula Kluth: I’m just ready to bite in. A lot of the money that we spend, people will say: “Well, it’s expensive to include kids. We don’t have that money.” More restrictive placements are very expensive. Special transportation is very expensive. I’m working with a district now. I can’t disclose the amount of money, but it’s just an unbelievable amount of money that they’re spending, sending kids with disabilities out. And for years, if you had this label, you went to this other school. That’s how it’s been done. The school board and the stakeholders have not questioned it or known to question it. But as soon as they start talking about inclusion, they say: “Well, that’s so expensive.”

In most of these districts, if you look at the money we’re spending on segregating kids, inclusive education…yes, there’s training that needs to be done in making this happen. But for many districts, it would cost less to pool these resources and spend money smarter.

Sharon daVanport: Right.

Dr. Paula Kluth: It’s not a simple answer, like: “Tomorrow we can spend money smarter.” But when you get involved in the school board, it’s helpful. Most people have no idea. I don’t think if kids need the supports, we shouldn’t spend the money. I’m just saying that if it’s between this or this, and we’re telling folks: “We don’t have the money,” we have to look at all of the money and say: “Are we spending money in ways that are as smart as possible?”

Actually, when we bring resources together from out of, like, co-teaching, those monies that are spent to support kids with disabilities also support kids without disabilities. One of my favorite studies that was done on co-teaching, they asked the kids: “How do you feel about co-teaching?” Of course, it was brought in to profit kids with disabilities. But every single kid in the study said: “This is better for me. I got more teacher time. I felt like I learned more. I learned from two different people.” Only one kid in the study said: “Nope, not for me. It didn’t help me.” And when they pushed further and asked why, he said: “Because I can’t get away with anything anymore.”

[Laughter]

That’s great, right? I obviously feel…I have a really soft spot about the financial part, because I do just think we have to really look at this broadly. That’s why I say I hesitate to say [it] to the parents, because it’s a policy issue. What are we really doing here? What kinds of values do we hold in this district, and how are those values guiding our practices? So I know for parents, that’s not a “Do on Monday morning” checklist item, but it is information they can have when they go to talk to districts: “You know, you’d be willing to spend that on my child if we were over here. Let’s talk about pooling resources over here.”

Sharon daVanport: Right. I want to take one call from the switchboard really quick, and then have you tell them the “give him the whale!” story before we end up having to announce our winner before the end of the show. It’s just going by too fast. This is going to have to be a Part 2.

Dr. Paula Kluth: Okay, great.

Sharon daVanport: I’ll just go to the phone lines and bring [someone] on.

Cindy: Oh, hi, there. My name is Cindy, and I live in the St. Louis area. We’ve done the gambit. We’ve done inclusion; we’ve done homeschooling for a year, and he’s now actually at a special school for the last three years, where he has shown the most progress. They do something very unique here. First of all, I should say my background is a [unknown] social worker, and I’ve also been a long time advocate here in the state of Missouri for IEPs and so on.

Everyone told me: “Don’t dare think about anything but inclusion.” For my son’s own specific needs—his extreme sensory needs, he has additional diagnosis [unknown] the anxiety and all—I just want to really tell families that it’s important that some districts, like St. Louis County, have its own special school district. We’re so blessed that we have a program both in mainstream school and in their own special schools that most areas don’t have. So we’ve got the best of all worlds here.

It really is important to expect the school to look at the individual needs of the student. You can’t always just take a cookie-cutter thing: “Well, gee, everyone should be included.” It’s not always possible. I know my son has read at a college level since age nine, and even with him being inside himself, he’s still a very strong reader. But he’s never read any of the books in a while.

It’s supposed to be, he’s probably taking his own path and I have this wonderful team that actually hand selects how they organize their students and in what classroom, to make sure that if someone has sensory needs, they’re not around a screamer. If this issue of this child is not going to be good for the other, then we need to reshuffle how we do the classrooms for the year. I cannot tell you how wonderful it’s been that my son’s needs have just been absolutely catered to. At the same time, they push the bar. We as a team, at home and at school, we take his challenges and we do it at a level and a pace that he feels safe, but he’s still making progress. My son made a 45 percent across the board increase, just in the last year on everything. 45 percent.

Sharon daVanport: Paula, what Cindy was saying just a moment ago, when she said that you have to take in those individual considerations…When you talk to parents about some of the things that Cindy’s bringing up right now—and thank you for calling, Cindy, too. I wanted to say that before I forgot—but also, what do you say to parents, Paula, who say to you that their children get the most success out of being treated individually? How do you encourage parents to advocate for their children on that level with schools that…Maybe they don’t have a school that offers what Cindy’s son’s school offers. What can they do?

Dr. Paula Kluth: Right. Well, I guess the main message is what I started the hour talking about. By the way, Cindy, thank you for calling, and thanks for the advocacy work that you’re doing for others as well. I guess my main message goes back to that initial message: What we want to see in inclusive schools is that it’s not a cookie-cutter.

I think that’s another one of those [misconceptions] of inclusion. That it’s the real estate of the inclusive classroom, and if you come here, you’re going to get what everybody else gets. So our idea of inclusive schools in the schools that I work in is to squelch that idea. That: “If you can’t make it here, then you’re out.” Or: “You can come in, and you can either do what they’re doing or use what they’re using, or sink or swim.”

While I’m thrilled for Cindy’s son having success, my dream is that parents don’t have to choose. I don’t want parents to have to choose either the neighborhood school where their siblings and community members go, or personalized instruction. That’s the main. I’m not saying that all schools do this, but I’m saying that the dream is to be able to serve kids in inclusive schools and getting those same kind of personalized services that any other child would get.

Sharon daVanport: Right.

Dr. Paula Kluth: I think the other misunderstanding of inclusion is that: “All kids get the same times with the same materials.” For a lot of kids, especially kids with significant needs that I work with, we have to revision what school looks like. I work with a kid in high school who works in the school store a lot—not only those skills that he’s addressing, but he’s got to be moving, talking, sharing and interacting. Otherwise, he’s not going to be comfortable.

I have kids who…we jump the tracks and I work with older students. I have kids who do a ton of service learning. I have kids who have classroom or school jobs that any kid might have. We have kids who maybe during centers and stations rotate to only two instead of seven stations, because that’s where they need to be. We have kids that work in different spaces in the schools, so that libraries and offices have spaces, and that hallways have makeshift spaces for all kids, so that we have not just one place to work in.

Sharon daVanport: Right.

Dr. Paula Kluth: So part of this is about that if there are schools that do look like cookie-cutters, that’s not good for anybody. What we’re trying to say is: “Let’s not make parents choose. Let’s not make them choose between individualized appropriate-for-my-kid or inclusion.” So inclusion, by definition, is supposed to be about responding to difference. I’m not saying that that’s happening everywhere. I know a lot of parents do have to pick, and that Cindy’s story is one of the most common I hear: “I wanted both, but I just couldn’t get it.” So I’m just going to say: “I have a dream.” You know, that kind of thing?

[Laughter]

Sharon daVanport: It’s true, though. We all deal with this.

Dr. Paula Kluth: People will say to me: “How can you say that? I couldn’t get that here.” I’m not going to stop talking about it and dreaming about it, because we’ve made progress in the last 20 years. I know that a lot of people are having to fight for what I’m talking about. But I think the answer is not to stop talking about it, but to not shut up and just to persist.

Because it’s not just good for Cindy’s son, the kind of individualization that she’s talking about, getting him exactly what he needs, is what I want for my own child—whether that’s enrichment or sticking to a certain talent or helping her through an anxiety or whatever issue. She has migraines, whatever that is. That’s the dream we want for all kids.So I’m glad for any kid to get what they need. I just want them to be able to get it in schools that are serving all of our kids.

Sharon daVanport: Right. Now, before we wrap things up—we have to announce our winner—I want to be able to tell everybody your contact information, where they can get in touch with you on the web and go to your website, if you would give that to everybody. And then finish up with the story, just because [unknown] [Laughter]

Dr. Paula Kluth: Okay. You can find me at my website I’m also on Facebook. I have a professional page there, so you can join us there. And that’s more dynamic of a resource. They post a lot of ideas. Discussions like Cindy’s question, we put those on the discussion page and we just all try to chip in and give our two cents. And also on the website you can see where I’m going to be, if I’m going to be in your neck of the woods. I think that’s everything for contact info. I’ll tell my story.

This is one of my favorite stories. Thank you for letting me tell it. This is a story that I share with my colleague, Dr. Patrick Schwarz, who’s a great hero of mine, professionally. Patrick and I do a lot of consultation in Chicago, and we were working with some Chicago public school folks a couple of years ago.

I was talking about: “One of the things that schools need to do is to teach to kids’ passions and fascinations instead of trying to squelch them.” So people say: “Well, he’s obsessed with this, and we have to extinguish it,” and “All he talks about is trains.” So I was talking about that. We can’t let kids do what they want all the time, but we can start by honoring that fascination and using it in our teaching. Sometimes by just honoring it and using it, then kids’ll work with us when we can’t always spend time like that, but they’ll know that they’re respected.

So a principal piped up and said: “Oh, I completely agree with you,” and she told this great story. The story that we stole from her was about a little boy that we call Pedro. He brought his little whale toy to school, his favorite thing. In previous years, the teacher had tried to really honor it in the preschool and teach with it and have the kids swim to the door for transitions, stuff like that.

[Laughter]

And did a really nice job. And then he got into a K1 or something like that. They were more formally into schooling and the rules. The newer teacher observed him taking his little whale toy out on the first day of school, and he was all beaming and excited. She apparently said to him: “Sweetheart, we can’t have toys at school. This is now kindergarten.” And so he just lost it, and was crying and ducking under a table and there was a commotion.

This wonderful principal said: “I heard him scream; I knew who it was, and I knew what had happened.” She realized: “Had we ever communicated with this new teacher?” Everything’s spinning, and she runs to this classroom and this principal’s obviously fantastic. She sees the scene, and she said: “What happened?” The teacher says: “I had to take this toy away. We don’t have toys.”

[The principal] said: “Well, what do you want Pedro to do?” And [the teacher] said: “I need him to go with the kids and sit criss-cross-applesauce and listen to directions and follow his peers.” And so the principal said: “Right! So just give him the whale!” That just became a little mantra for our little group, which was: Just give him the whale! Work with kids; work with kids; work with kids. Patrick and I said: “Boy, that’s got to be a book title. We have no idea what the book’s going to be about, but that’s got to be a book title.”

[Laughter]

Two years later, we had the book Just Give Him the Whale!, which is about working with kids’ fascinations. Next month, the children’s version of that book comes out. That book is called Pedro’s Whale. I do want to say that all of the beautiful artwork is done by a young man with autism. His name is Justin Canha. He’s an incredible artist, and so you may want to learn more about him by Googling him, as well.

Sharon daVanport: Oh, that’s wonderful. Actually, Paula, you could come back on for ten more series of radio shows, to really discuss this in detail. There’s just so much to discuss when it comes to education, isn’t there?

Dr. Paula Kluth: True. And I think that our caller’s point is so well taken. That just shows not only how much work we have to do, but how complicated these issues are. The bottom line is: How do we get kids what they need? That’s not a point I take lightly at all, and I want to make sure that everybody realizes that I’m out here fighting on this end, because I feel it’s important. I know how important it is on a day-to-day basis, that you have to do everything you can to get that child’s needs met. That’s what I want to do.

Sharon daVanport: Right. Where are you going to be next, Paula? Where are you going to be next?

Dr. Paula Kluth: I am going to be next in St. Louis. I think [that’s] my next big talk, and I’m going to be speaking with a group called Spectrum Training Systems. You can find them online. I’m speaking, I believe, on a Thursday and Temple Grandin will be speaking on the Friday in the St. Louis area. So that’s my next big talk. It’s in August.

Sharon daVanport: Okay.

Tricia Kenney: Good. I’m going to try to make it.

[crosstalk, unintelligible]

Sharon daVanport: Okay. Well, I will be in touch this next week to follow up about the show, Paula. I really appreciate you being our guest today.

Dr. Paula Kluth: Thank you. [The conference is] in late August, and you can go to the Spectrum Training Systems website. I’ll do interviews, but don’t ask me for calenders. It’s been delightful. Thank you so much, to both of you. I really enjoyed being here.

Tricia Kenney: Thank you.

Sharon daVanport: Thank you, Paula. Thank you.

Dr. Paula Kluth: Thank you. Take care.

Sharon daVanport: All right. Bye-bye.

[Paula hangs up]

Sharon daVanport: Okay. That was Dr. Paula Kluth, and she’s just fantastic. I encourage everyone to get over to her website. You can get all of her books over there. All of her books are available and accessible right through her website. I encourage everybody to go over there, to PaulaKluth.com and you’ll find something. You’ll find something on her website that you’ll definitely want to utilize with your own situation. It just really is a wealth of information over there.

All right. I want to bring Curtis on now, with b-Calm Sound We’ve already drawn for the winner, so we want to be able to bring him on so he can tell us a little bit about the products. Curtis, are you with us?

Curtis: Yeah, yeah. Good morning. How are you doing, guys?

Sharon daVanport: Pretty good.

Tricia Kenney: Hi, Curtis. It’s good to have you back.

Curtis: Well, it’s good to be back, and I enjoyed listening to the comments from your guest today. It was a lot of really great information. Kudos to you guys for another good show.

Tricia Kenney: Well, thank you.

Sharon daVanport: Thank you. Yeah. So we hear that you have some really great new products coming up, Curtis. You want to tell our listeners a little bit about b-Calm Sound, and then about your new products?

Curtis: Yeah, I’d love to. Thanks for the opportunity. b-Calm is all about acoustics primarily, and noise control, and putting some good assistive technology in the hands of folks that are students or kids that are dealing a lot with auditory sensory issues.

The first b-Calm system was a way to block out sound either in your home or in a classroom, or say you’re out at a baseball game or a concert or restaurant or something that would be fearful and disturbing. [The system would] replace those with something that’s really positive, that’s natural, that is more familiar, affirming and calming for the kids. So, rather than hearing all the commotion of a busy lunchroom at school, they can hear waves on the beach or wind in the trees. There’s nothing super-magical about it. We’re not pushing the treatment or a fix. It’s just a really good tool that helps kids in a positive intervention sort of way.

Well, we’ve kind of expanded now. We had our base b-Calm system, and we also do CDs and MP3s. We’ve got a new one coming out that’s actually on a touch screen player that will include over 150 different visual prompts for parents to use or teachers, almost like different packs for communication or prompts or that kind of thing. Not just hearing a sound, but a kid can also see a picture—either of something that’s calming to them, or reaffirming, or maybe it’s something the teacher can use to redirect and help them stay on task for an activity, or that kind of thing.

Sharon daVanport: Wow.

Curtis: It’s really neat. I expect that’ll be launching here inside of a couple of weeks, so I’m just putting the finishing touches on it. We’re pretty excited about that. We’ve got another one coming that I don’t even think anything’s up on the website about yet. It’s called our b-Calm Hideaway. It actually came from somebody who’s associated with our company that said when their child was small, they drug a big refrigerator box into the preschool class and that became his own little sensory safe space, if you will

Tricia Kenney: Right. Right.

Curtis: So we took that idea, put something together that’s pretty inexpensive. You can unfold it, set it up in the classroom, fold it up, throw it in the back of a minivan, take it home. It’s all designed to be that safe space for that child.

Sharon daVanport: Wow.

Curtis: They can [unknown] the way it’s familiar to them. It helps them for a sensory break or that kind of thing during the school day. I’ve had some teachers testing it. They just say it’s really easy to use. It’s really fun. They just set it up in a corner of the classroom, and it’s there.

Tricia Kenney: That’s wonderful. Yeah.

Curtis: It’s kind of a familiar thing that isn’t in just one place. You can take it to Grandma’s house, or you can take it to when you’ve got to stay at a hotel or whatever. Then the child can always have something familiar and reassuring to go back to.

Sharon daVanport: I was thinking of Temple Grandin’s hug box that was featured in the movie.

Tricia Kenney: Oh, her squeeze machine?

Sharon daVanport: Yeah, that’s right. Yeah. Oh, wow. It’s kind of just an own little space. That’s awesome, Curtis.

Curtis: Yeah, well, thank you. We’re excited. We’re all about practical solutions that are going to be affordable and meet the need, and are really more tools. We like to see how parents and teachers learn and figure out and find ways to use the stuff that we didn’t even imagine.

Sharon daVanport: Right.

Curtis: Something exciting for me. In addition to the giveaway we’ve got for you guys today, we’ve been running one on our website to win our b-Calm GP System (our base system—the player and the headphones). We recently upgraded our headphones, and we just wanted to say that that contest is going to run on a point system. You earn some points by either Tweeting about us or linking or that kind of thing. If somebody goes on our website and they want to put an entry in, and if they’d like to link back to your network or the show where they heard about us, then I will gladly give them a couple extra points for doing that.

Sharon daVanport: All right.

Tricia Kenney: Thank you.

Curtis: We want to pass it back and forth, and we can all build a community and do that.

Sharon daVanport: Well, that’s really nice.

Curtis: b-calmsound.com is the website. As always, if any of your listeners or parents, teachers have questions, we are very quick to respond through our website. Or they’re welcome to e-mail me directly: curtis AT b-calmsound DOT com. We’ll help them out any way we can.

Sharon daVanport: All right.

Tricia Kenney: Wonderful. Thank you.

Sharon daVanport: And we did do a drawing, so I’m going to let everyone know. My daughter drew again for this prize, and she ended up drawing a phone number from our switchboard. (We have a lot of listeners who listen in through our switchboard, who don’t go into the chat room, but they listen directly from their telephone).

We’re not going to give out the entire phone number, but if you have a 608 area code with 483 prefix, shoot us an e-mail at info AT autismwomensnetwork DOT org and let us know what your complete phone number is. Actually, it was the only phone number with a 608 area code and 483 prefix, so if that’s yours, let us know. We want to get your information so we can send it on to Curtis. You have one two four-packs of their Audio Sedation MP3s. Do they get a choice of the sounds? Is that correct, Curtis?

Curtis: We’ve got four sounds that we’re doing right now, so what I thought we’d do, we’d just give them all four. They can use them, and [I] hope they’ll be a blessing to them.

Sharon daVanport: All right. Well, thank you very much, Curtis. As soon as we hear from the winner and that area code and prefix number, we will send them your way, as always. Okay?

Curtis: [unknown] Yes, wonderful.

Sharon daVanport: Thank you so much for coming on.

Curtis: No. Thank you guys for the good work, and as always, anything we can do to help, please don’t hesitate to let us know.

Sharon daVanport: Okay. Thank you, Curtis.

Tricia Kenney: Take care.

Curtis: Anytime. You guys have a good day.

Tricia Kenney: You, too.

Sharon daVanport: You, too. Bye-bye.

[Curtis hangs up]

Sharon daVanport: Curtis is so nice. I always appreciate the way he comes on and he’s able to explain to everybody exactly how the products work, because they really do. I know that every person that I know person who’s used b-Calm Sound for themselves or for their children, they say it works wonders.

Tricia Kenney: Yeah.

Sharon daVanport: The calmness that they get. I know a lot of people like specific kinds of sounds, and they’ll even work with you on getting the right one, and getting that adjustment. Curtis is really good at that.

Tricia Kenney: Yeah, they’re a great company, really. I’m really proud that they’re working with us.

Sharon daVanport: All right. I think the only thing we have to do before we wrap it up is just tell everybody about how to send in their information for LifePROTEKT for the free GPS that’ll be our next giveaway.

Tricia Kenney: Yep. That’s right. Same sort of thing: you can listen in on the shows, come into the chat room, send your information to us at info AT autismwomensnetwork DOT org. Tell us who you are, why it is that you need the device. This is a GPS location device, plus one year of service for that device for free. So if you have a loved one or you are someone who needs a device like that, please send us your information and you will be put into a drawing. And every month, we will be drawing a name to win that particular prize.

Sharon daVanport: We will be more specific on the exact kind of prize. We’re finding out after working with LifePROTEKT that we want to make it work for everyone who enters. But we also want to be fair to the companies who are sponsoring this through LifePROTEKT. They’re working with Lou Giuffre on being able to get these products out there at no cost to our winners, so we want to make for sure that it’s going to be a good fit both ways. So we’ll give more specifics on that next week. We’ll have more to pass on.

So until then, we want to let you know that it’s not going to be a Saturday show next week. It’s going to be on Thursday. We’re going to have Dr. Shana Nichols back on with two other authors, because they’re hosting an event in September with Dr. Shana Nichols and Dr. Liane Holliday-Willey and Rudy Simone. The three authors will be here on Thursday the 29th to tell us more about that special event for females on the autism spectrum that’s going to happen in September in San Francisco.

All right. Well, thank you, Tricia. I will talk to you later. I’ll talk to you before I head out to Washington DC. I’ll give you a call later today, okay?

Tricia Kenney: Okay. Sounds good. Thank you [very much?] Sharon.

Sharon daVanport: All right, thank you. Thanks, everyone, for joining us today. Bye-bye.

Tricia Kenney: Bye-bye.

[End]

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