Other People's Words

Transcript: Autism Women's Network interview with Dana Commandatore about inclusive education

Posted in Uncategorized by Tera on December 27, 2009

This is a transcript of Sharon daVanport’s and Tricia Kenney’s interview with Dana Commandatore (RethinkingAutism.com, author of the children’s book Michelangelo the Diver) about autism and inclusive education for the Autism Women’s Network radio show.

Sharon daVanport: Good day, everyone. Welcome to AWN Radio. We are the Autism Women’s Network, and we are broadcasting live on Friday, December 18. I am your host, Sharon daVanport, and with me today is my co-host, Tricia Kenney. How are you doing today, Trish?

Tricia Kenney: I’m doing good. How are you, Sharon?

Sharon daVanport: I’m a little bit better. Still running a fever, but we’ll see if you’re gonna have to fly solo. I was joking with the people over on Facebook, saying I didn’t know how long I was gonna be able to sit up without passing out, I’ve been so dizzy.

[Laughter]

I feel like a ditz. But, oh, well. How’s your little one? You had to take him to the doctor or the dentist this morning?

Tricia Kenney: The dentist, yeah. That was an adventure, as always.

Sharon daVanport: Our little ones who are on the spectrum sometimes really struggle with the noises.

Tricia Kenney: And the anxiety of it all, and what not. So, yeah. But it wasn’t bad. They weren’t really doing any work today; they were just checking him out and doing X-rays.

Sharon daVanport: Right. That’s kind of interesting that on the day of our show, your little one had a dental appointment. The sponsor of our radio show, b-Calm Sound, they actually began the design and the technology for their Audio Sedation system with a dentist helping. It was because of an experience that a dentist had with some patients who were on the spectrum; they came up with this idea. Their entire business just grew out of that.

Tricia Kenney: Right. I know that’s a very common practice, to use a headset with music playing. Although they didn’t use the b-Calm angle with the soothing sounds. They were just: “Play whatever radio station you wanna play or whatever, and be done with it.”

Sharon daVanport: They had teachers and parents and children and adults all with ADD, ADHD, who are on the autism spectrum. They had parents who monitored their children and their stress levels, and so that’s how they came up with the different sounds—on what was soothing, on what worked, on what didn’t work. I think they’ve really got a good thing going.

Tricia Kenney: Right. ‘Cause I don’t know if listening to AC/DC would help you all that much if you’re really stressed out at the dentist’s office.

[Laughter]

Sharon daVanport: True. I wanted to let everyone know that today we are beginning our monthly contest. We will be taking names from the chat room. We’re just gonna write down names for the next month. In the middle of January, we will have our monthly giveaway.

Tricia Kenney: Yep. And what are we gonna give during that giveaway?

Sharon daVanport: I believe that Curtis from b-Calm said that they are going to do two prize giveaways in January. Two listeners who have signed into the chatroom will win two of the four Audio Sedation sound packs—I guess the sounds that go into their player. They’ll have their choice of what they want to order. It looks like it’s Summer Forest, Spring Rain, Tropical Beach and Sunday Drive. Those sound pretty good. I need Tropical Beach right now, as cold as it is in Nebraska. [Laughter]

Tricia Kenney: I know. [Unknown] we still don’t have snow here. I’m hoping we get some for Christmas.

Sharon daVanport: We’d better go ahead and bring Dana on. She ended up switching the show time, because she had to go to her little guy’s school. I want to have her explain it all; I don’t even know where to begin. Are you with us, Dana?

Dana Commandatore: Yes I am. How are you guys doing?

Tricia Kenney: Good. Welcome to the show, Dana.

Dana Commandatore: Thank you. Good to hear your voices.

Tricia Kenney:You too.

Sharon daVanport: Is it nice and warm in California?

Dana Commandatore: It is, actually. It’s a little chilly, but we consider “chilly” about 60 degrees in the morning.

Sharon daVanport: [Laughter] Well, you probably are a little bit hot from being at the school—emotionally hot?

Dana Commandatore: Yeah. I’m getting used to that. My body temperature gets raised a lot these days from aggrivation.

Sharon daVanport: Could you tell us a little bit about your son?

Dana Commandatore: Sure. My son was diagnosed with autism just after he was two years old. I like to joke around and say he’s “averagely autistic.” He kind of falls in the middle of the spectrum, if you believe in a spectrum, which I do. A psychologist at our local regional center diagnosed him; then it was later confirmed by a doctor at UCLA, a developmental pediatrician.

He doesn’t have any dietary issues or seizures, but he does display the classic autism symptoms—or he did, especially when he was younger, such as poor eye-contact, very little speech, a lot of stimming and flapping, no purposeful play. A lot of things like that.

Sharon daVanport: When we were talking earlier, did you say he’s in second grade?

Dana Commandatore: Yes, he is in second grade. He just turned seven in November, so he’s young for his grade. I think we’re the only people that put a developmentally delayed child in kindergarten at four years old. [Laughter] We figured he had two years of preschool and one year of kindergarten before that. Academically, he was ready for it.

Sharon daVanport: Do you feel like you can tell us what happened with the school today without getting too heated up?

Dana Commandatore: I can. The school district I’m in is one of the largest school districts—if not the largest school district—in the country. There’s a lot of issues and problems, and getting everybody on the same page is very difficult. As far as inclusive education goes, as you both well know, there’s so many different interpretations to what that is.

Right now, for the past two years, I’ve been dealing with teachers who don’t really understand inclusive education, or don’t really understand the benefits of it. They don’t really, truly understand what it’s like to educate an autistic child. My son has a full-time aide with him in the classroom. So the teacher is what I’d consider kind of lucky, in the sense that she doesn’t have to take time away from other kids to manage his behaviors and work on his behavior support plan. She has a lot of help with that.

But she does go to lunch every day for a few minutes, and he is left with a resource teacher or another teacher. I guess yesterday, he apparently was trying to get the attention of two teachers who were in the middle of a conversation. It is definitely a challenge for Michelangelo to be patient and wait his turn. He was trying to get their attention, and he said something that I don’t know if I’m allowed to say on Blogtalk radio; it sounds like the word “witches.”

[Laughter]

Apparently he said that, and they turned around and said to him: “Did you just say ‘witches?'” and he said “Yes, ‘witches.'” So when his aide got back from her lunchtime, she saw him being reprimanded by two teachers, and he was very upset. She went over to find out what happened; when she heard the story, she found out that what they don’t realize is they gave him the word to say. He does not know to use a word like that in a situation like that.

So when the teacher questioned him, she said: “Did you say this word?” and she repeated the word, and he said the word back to her. Whereas the correct thing to do is to say: “Please repeat what you just said.” Don’t lead the child into an answer. She was upset that he had said a bad word, and he didn’t know what was wrong. If he were another child, that could really spur some sort of behavioral meltdown or aggression for no reason. The educator in that situation did not know how to properly question a child who’s been in their class for several months now; she really, quite honestly, should know better.

Sharon daVanport: You said he could have been put into a meltdown. I’ve seen children who start off like Michelangelo and then they continue to be reprimanded and frustrated in situations where they shouldn’t be, because they didn’t understand that situation. That continues, and then they end up being that child that melts down.

Dana Commandatore: That’s exactly my concern.

Tricia Kenney:We’ve heard those stories over and over again.

Dana Commandatore: The adults don’t realize it. What they’re doing is encouraging disruptive behavior. It’s difficult; you try to explain it, and sometimes, people either get it or they don’t.

Sharon daVanport: How did you address the situation, Dana? Did you point out to them that he cannot be reprimanded in those situations? Did they get it?

Dana Commandatore: It was interesting; this morning I said, “His aide let me know what happened yesterday, and I just wanted to discuss it with you.” And she turned around and said: “Isn’t it funny?” I just looked at her and I said: “Funny? No, actually. If in fact he did say something like that, I would never think it was funny. I would think it would be rude and disruptive. If he didn’t say it, you’ve reprimanded him for something he didn’t do. You’ve confused him about his behavior, and that’s something that needs to be addressed.”

It went back and forth for a while, and she said, “Well, really, it doesn’t really matter.” I said, “No, it does matter.” I started to feel like an annoying parent who’s pushing an issue that obviously “doesn’t matter.” When he was questioned by his aide, he did say “which is.” So, he never said that. He said something completely different. I said: “In your mind, do you think that there’s any way he could have said ‘which’ instead of the other word?” She said: “Oh, sure.” Then I started to talk again. All the kids came around, and she told me that she really didn’t have time to discuss this anymore and walked away. That was my morning.

Tricia Kenney:[sarcastically] Good morning. [Laughter]

Dana Commandatore: Yeah, right. It is very frustrating, ’cause like you said, this confuses the child. Then all the sudden at a point they don’t realize what they’re doing and have no idea what’s good behavior, what’s bad behavior: “I’m gonna do whatever I want.”

Tricia Kenney:This leads us into the whole concept, then, of inclusion and the things people face with it. Do you wanna explain to people exactly what we’re talking about when we talk about inclusion, when it comes to special needs children?

Dana Commandatore: “Inclusive education” is a concept that has many different meanings to many people. I think, at its base, what it means is to give a disabled child an opportunity to learn beside typical peers in an environment that benefits both kinds of students. Many people differ on what extent or accommodations should be carried out to make this possible, but I think that that is the basic idea.

It is, in my opinion, the responsibility of any parent to help determine whether or not their child is benefiting from an inclusive environment. If you see progress, if you think your child is happy, that’s when you continue on this path towards putting your child in a class with typical peers to give him typical peers to emulate or look at and see behaviorally how to act in public. For other kids, I think it helps them become more compassionate.

Tricia Kenney:It exposes them to the real world. When kids are growing up and they’re going into high school and they get out into the real world, they’re not all gonna be the same kids. You’re gonna get a whole range of people from every walk of life. If you have been so sheltered that you don’t know that these different people exist, then what kind of life are you gonna have? How are you gonna communicate with other people?

Dana Commandatore: It prepares kids. Yesterday was my son’s holiday program. They get up in front of all the parents and they sing, and some kids perform. They play musical instruments. It’s always been an issue, obviously. Any parent of an autistic child knows how difficult this is. This was the first year that he didn’t have to wear headphones, and he didn’t start crying, and he actually stood up there with his friends and sang.

Tricia Kenney:Aw.

Dana Commandatore: It was wonderful. The thing that I found absolutely wonderful when I watched the video—’cause I’ve already watched it several times—is to see the other children when Michelangelo does start to talk or does start to go out of line. The other children help him and bring him back in a really caring way.

The idea of putting my son in this environment with kids he’s growing up with, who care for him and develop a relationship, and understand and show compassion and interest. You don’t wanna take him out of that because the teachers aren’t getting it. You don’t wanna punish him by putting him in a different environment where he has to relearn everything all over again. But then again, you don’t want him to pick up bad behaviors and attitudes and feel badly about himself because somebody doesn’t get it. It’s a very difficult situation.

Sharon daVanport: It’s a fine line. There have been situations with my son where I had to weigh the pros and the cons and say: “Well, is he still benefiting in this situaion, or am I just spinning my wheels here? Is he actually being harmed more, because the teacher’s just not getting it?”

Luckily, we never came to the situation where I had to totally pull him out, but it came really close. There were a couple years—I believe it was his third and fifth grade year—that he really struggled and the teacher really struggled. It gets better as they get older, but they do trade in a different set of issues with inclusive classrooms. You have to start all over with different situations.

Tricia Kenney:That stuff happens in special ed classes, too, though. My kids were in special ed classes in the public school system here, and I got a note home one evening that one of my sons was saying that b-word: said it at least 30 times to his teacher. And that he was having a really rough day. I’m like: “We don’t even say that word here; I don’t get where he got that.” But from the peers in the special ed classroom, that stuff happens. Those kinds of issues, I don’t think it really matters where you’re coming fom. As long as there’s somebody in the classroom who’s leading that lifestyle, your kid might be exposed to it regardless.

Dana Commandatore: That’s very true.

Sharon daVanport: Have you come to any situation yet, Dana, where you believe there might be a certain class or a certain time of day that it isn’t best for your son to be included in certain activities? Or has he been able to be a part of the class the whole time?

Dana Commandatore: I think when it comes to things like testing, depending on where he is, there are certain tests that he can do with the entire classroom: when it comes to his spelling tests or a quick math test—something that he’s used to, that he has on a weekly basis, he can do it with the other kids. He can sit in the room and focus, and I think he actually enjoys the competition.

When it comes to the overall school testing or the state testing, it’s very difficult for him to sit there and look at something completely new or a new format and get it on his own. That’s when he needs to be pulled out with a resource teacher and given questions one on one.

Sharon daVanport: My son is 16 now, almost 17, and I have found, looking back through the years, that the situations that I run into that become very challenging with some teachers or some aides because they seem to get confused. They don’t seem to think that we can have it both ways. But that’s the whole idea of inclusive education and IEPS: to cater their education. You can have it both ways.

I try to tell this to some of the teachers, and I think that that’s the biggest challenge that I have had. Do you think that the confusion you’re experiencing is that the teachers don’t get that “In this instance, yes; in this instance, no”?

Dana Commandatore: Oh, they can’t grasp it. I have a great example. When we just had my son’s parent-teacher conference, we went off on one topic that had nothing to do with his education or anything to do with school. I tried to bring it back to how he was doing in school. When I asked about his academics, she pulled out his test results. She said: “Well, we’ve got 10 out of 10, 8 out of 10, 10 out of 10, 10 out of 10.” And I said: “Great! This is wonderful!” And she said: “Well, it doesn’t really count, because he gets pulled out.”

Sharon daVanport: Right. I’ve heard that so many times!

Dana Commandatore: I just looked at her and I said: “Well, you do realize that last year, he couldn’t even sit and attend to one of these tests. The fact that he’s doing it now on his own leads me to believe that, with progress and with support, he will eventually be able to do this on his own.” She just said to me: “So there’s been progress?” She had no clue. She’s a very nice woman, but she doesn’t understand inclusive education. I find myself constantly proving my child’s worth in that environment.

Sharon daVanport: Well, just realize that it will probably continue. I don’t wanna sound negative, but just put on that suit of armor. Someone’s asking me in the chatroom what I mean by “having it both ways.” What I mean is that a teacher thinks that inclusive education means that your child is going to be with that class 100 percent of the time—

Dana Commandatore: —without additional supports.

Sharon daVanport: Right. I have had to specifically point to my son’s IEP and say: “You see here? He is graded not the way the other children are graded; he is graded according to his ability. If he can only finish six questions out of 20, he is graded as if those six were 100 percent of the questions.” I have that specifically written into his IEP.

There have been teachers who just can’t grasp that. They can’t; they say the same thing: “Well, he was pulled out,” or “He didn’t participate with the class.” Well, hello! He couldn’t participate with the class in that situation. That cannot be counted against him, because in his IEP, he’s accommodated for that.” It is sometimes a continual battle. It really is.

Dana Commandatore: I’m at the point where, honestly, I don’t really care what my son’s grades are. I know that, cognitively, he’s got it. It’s really just a matter of how motivated he is; so I just wanna keep him motivated. If he can only answer two questions on a test, but we know he knows all the other answers, I don’t care.

Academically, I’m not worried about him. I’m worried about him socially. The problem with inclusive education or a general ed environment is a child has to constantly balance academics and socialization. To most kids, it just happens. To our children, it takes time and it takes help and it takes compassion. If you’re with people that don’t wanna do it, you either shoo them and you put up a bigger barrier, or you take the time to help make people understand the benefits of it and pave the way for other children—which I think all of us are trying to do. Maybe our generation is—

Sharon daVanport: —the pioneers.

Dana Commandatore: Yeah. Who knows? Maybe inclusive education isn’t the answer. Maybe there’s a much better way to educate them that’s more cost-effective for school districts; that helps them more.

Sharon daVanport: But not at the expense of our children. You’re putting them first and letting their needs define what inclusive education will mean, even if it’s not like what you said. Even if it’s not what it is right now today, let their needs mold what it eventually becomes.

Dana Commandatore: The only way we’ll know that is if we actually have people who are studying it and looking at it and looking at better ways of improving it.

Sharon daVanport: That’s the perfect thing! Who’s our favorite person? Paula Kluth. We talked about this the other day. She’s just wonderful. Do you wanna tell everybody about Paula Kluth?

Dana Commandatore: Yeah. She’s a consultant, and I would love to get her to come to my school. She is a fabulous consultant who has put a website up, where there are so many great articles or lectures or pieces about how inclusive education should be done.

Sharon daVanport: She gives so many examples at so many different ages.

Dana Commandatore: Yes. Everything. “Honoring and Including Students with Communication Differences,” “Making Relationhips a Priority,” “Strengths and Strategies: Assessing and Sharing What Matters.” She has great things about how to adjust the curriculum so that you could bend it. Even though you’re teaching the same thing, you could have different levels and varying degrees of intensity for different kids. You’re getting all the different kids’ needs met. It’s so important. These sort of models or looks at education need to be so much more widespread and available.

Sharon daVanport: She is the go-to person; I truly mean that, to anyone who’s listening. I had the privilege of hearing Paula speak at our state’s autism conference two years ago. She was fabulous. She was the keynote speaker, and I tell you what. She knows her stuff. She’s been a teacher for many, many years. She knows what she’s doing, and she gets it.

She gives so many different examples of what inclusive education should mean and what it can mean for every child. She basically is the one who put that thought in my head. The way she worded it was: “Let the children define. Let their individuality define how you’re going to approach their inclusiveness.” And then she held up a piece of paper and said: “That’s what their IEP is for.” She’s just really good. You can get her to come to your school. She travels around and gives talks.

Dana Commandatore: Yeah. I’ve actually just e-mailed her last night, in hopes of trying to get in touch with her. I don’t wanna be the parent that is fighting with my school district all the time. I want to help them and make them see what can be done, and how beneficial this is for everybody.

Tricia Kenney:When you brought up having your son in an inclusive environment, how did the school react to that? Did they embrace the idea, or were they saying: “Well, he needs to be somewhere else”?

Dana Commandatore: In pre-k and kindergarten, we had teachers who truly understood inclusive education. Michelangelo did great. It was a wonderful experience, and I was kind of spoiled. When I hit first grade, I had a teacher who almost by Christmastime hadn’t even read his IEP. She assumed that all IEPs for autistic kids were the same and there was really no reason to do it. However, she was complaining that he just didn’t get it.

So what I had to do at that level was either threaten a lawsuit or say: “Let’s talk this through.” We sat down with the principal and the assistant principal and the teacher. It’s like trying to explain to somebody who doesn’t believe that women should ever be outside the home that it’s okay to have a job. That’s how I found the situation. They kept saying to me: “Well, maybe you should really be thinking about special education.” My answer, thanks to Ari Ne’eman, is: “Special ed is a service; not a placement.”

Sharon daVanport: That’s right.

Tricia Kenney:Very good. Very good.

Dana Commandatore: It’s very important that they realize that. In an inclusive environment, he is having some sort of special education. They have to legally let him do this, and say that they abide by inclusive education. They have an inclusive education specialist in his school district that’s supposed to come, yet they won’t give me hours towards that. They think that they have best teaching practices that seem to address all these issues.

What it really comes down to in the end is their advice that they give me. They think that they know better on so many issues when it comes to raising my child. I actually had the teacher last year tell me that I should probably realize that this is all he can do.

Sharon daVanport: Oh, Tricia, those are fighting words for you, aren’t they?

Tricia Kenney:Wow.

Sharon daVanport: Tricia’s had that happen more than once. Don’t get Tricia going on that one. My goodness.

Dana Commandatore: I’m just like: “Do you really, honestly think that I’m just supposed to accept that this is all my child can do right now in first grade, when he has amazed me at every step of the way? That this is all the sudden it?”

Sharon daVanport: Isn’t it terrible when you feel like you have to be a cheerleader? Not that it’s bad to be a cheerleader for your child, but if you feel like you constantly have to defend your child, don’t you wonder what must be going on when you’re not there? That’s what scares me.

Dana Commandatore: Sure. The only reason I could send my son to school and we’re not living in the poorhouse homeschooling him is that the aide that he has is wonderful. She pushes him, and she has so many great ideas.

Sharon daVanport: She makes it worth it, then.

Dana Commandatore: Yeah. She’s been with him for three years now. She is the reason why I could take a deep breath. When it’s pouring rain out, she won’t let him sit outside in the rain and eat lunch; she brings him in the classroom. I’m so fortunate to have her.

Tricia Kenney:What is your son’s teacher’s exposure to the autistic population? Does she know anything about autistic people at all? Or just what you’ve told her in meetings, or something?

Dana Commandatore: It’s hard to tell. I think the general public has a very negative perception about what autism is. One of the things that I do with my website is try to promote a much more positive view, as many people are. I think her entire idea is that it’s negative. They’re disruptive; she doesn’t know how far they’re gonna go in life.

Tricia Kenney:Yeah. I was gonna say it sounds like she thinks he’s mentally incapacitated or something.

Dana Commandatore: Yeah. Last year they kept saying that cognitively, he had issues and I forced the issue for them to evaluate him. Of course, it came out that he was reading way above grade level, and doing so many things above grade level, and that his issues were not, in fact, cognitive.

Sharon daVanport: That’s okay, Dana. When Michelangelo is Ari Ne’eman’s vice-president, then you can have some words with that teacher and say: “Told ya so!”

[Laughter]

Dana Commandatore: Yes, exactly. That’s my plan in life. You wanna be on that end. And even if he did have cognitive issues, that doesn’t mean he shouldn’t be in that classroom. Each of our children are different.

Tricia Kenney:The thing is, why would she feel the need to try and discourage him from learning and from growing and from doing all he can, even if he did have some issues in that respect? What is it to her? She’s a teacher; you teach kids, regardless.

Dana Commandatore: That’s what I find the most frustrating. I don’t need to hear this from you. Let’s just worry about his academics.

Sharon daVanport: Dana, you say that so sweetly. That’s the neurotypical sweetness and graciousness that my Aspieness just does not grace me with. I felt so bad. A couple years ago, I actually looked at a teacher and I started laughing when she was explaining how frustrating something was.

I said: “Are you kidding me? You’re telling me that to have to take my son out of the class, feel like you had to address this whole situation because he wasn’t getting it, you made this big deal out of it. Do you know, if you would have just taken that chalk and you would’ve put it in your hand, you would’ve turned around to the chalkboard and you would’ve asked the question and drew something visual on the chalkboard, my son would have raised his hand. He would have given you an answer. If you would’ve done something visual, it would’ve taken you less time to do that than it did for you to feel like he was being obstinate because he was embarrassed and did not want to answer the question.”

By the time he was in junior high, he used to be embarrassed if he was called on and he didn’t know how to answer a question, because he got picked on in junior high. He felt like the kids would think he was stupid, so he ran out of the class.

Tricia Kenney:and *Dana Commandatore: *[sympathetically] Aw.

Sharon daVanport: Yeah. So then she had to address that whole situation, and I said: “Look. We’re having a meeting after school. It would have taken you, what? Ten seconds to draw a picture on a board? He’d have been the first person to raise his hand. Why can’t you adjust your teaching method?” And then she had the audacity to say to me: “Change my entire way of teaching for one child?” I said: “Why not? The other children are gonna get it too. You’re gonna draw a picture; they’re gonna get it. Is it gonna really hurt the other kids?”

Dana Commandatore: No. It’d hurt her.

Sharon daVanport: That should be your next video, then. You must make a video on inclusive education.

Dana Commandatore: That is my plan. That’s what I really wanna do.

Sharon daVanport: You know what we can do? We can try to get it on all the PBS stations. It’s educational. We could get it on Sesame Street.

Dana Commandatore: That’s what I really wanna do. That’s my goal, and I’ve been taking the Christmas break to write up a plan for it and get moving on it. I think it’s extremely important.

Sharon daVanport: Yes. That would be wonderful if you could do that, Dana. I could see something like that really taking off.

Tricia Kenney:Do you know the legal rights that we have. Say your children are in a school that has a separate special ed classroom, and it’s right there in the same school. They have a policy that special ed kids do not get mainstreamed until after second grade or third grade or something like that. Do you know if we can just go in there and say: “No, thanks. We’re gonna just go right into the regular classroom”?

Dana Commandatore: I think that that probably differs.

Sharon daVanport: I’ve heard that the school and even the teachers have the right to assess the situation and make their classes how they see that they’re balanced. So you do have to oftentimes fight for inclusive education.

Dana Commandatore: You do. And not all school districts offer it. But in my school district, they do. It’s funny—you guys talked about specializing or looking at your child differently or a teacher wondering why she has to adopt different methods. Ironically, for somebody who has such difficulty with language, my son is teaching himself seven different languages. He’s learning how to count and say the alphabet and do other things. So when he’s at school, he’ll answer math questions in part Hebrew, part Japanese.

Sharon daVanport: A little Einstein. He failed math in school, but look what he did.

Dana Commandatore: I don’t want the teacher saying “Wrong” and moving on, which is happening now. I would love it if she would just embrace this and say: “Okay, Michelangelo, thank you for doing it that way. Can you now do it in English?” Acknowledge the fact, and then other kids will find it funny or interesting.

Tricia Kenney:It’s impressive. Why are people not impressed with that?

Sharon daVanport: One video at a time, Dana. One video at a time.

[Laughter]

I’m serious. I am. You’ve got something going on now.

Dana Commandatore: Let’s hope I live to about 150, because there’s a lot of things I wanna get done and there’s not enough time in the day to do them.

Sharon daVanport: You know how you were talking about inclusive education is not even mandatory in some schools, but that’s why for all these years school districts have gotten by with these seclusion rooms. I don’t wanna get into this too much, because Ari’s gonna be coming on the 28 of December to talk about seclusion and restraints.

Tricia Kenney:Why do they even need all that? Even when I was growing up—and I’m really old—in grade school and junior high and in high school, every classroom was split into six different levels. Everybody had different books for the same subject in the same hour. This person’s in this level of history, this person’s in that level. This person’s in this level of math, this person’s in that level. It was all in the same classroom; it’s not like everybody had the same book and everybody was at the same level. But they didn’t go and put everybody in different classrooms. So I’m like: “Why is it so difficult now to cater to that degree?

Sharon daVanport: I’ve heard teachers say that it’s for many different reasons. Different school districts have different policies. I had one teacher tell me last year that, with the paperwork that she does, she doesn’t even have time to do the kind of planning with her classes and get to even know her children personally. If she doesn’t turn in X amount of documentation to the school board that teachers are required to do in our state, she won’t have a job the next year. Her teaching contract will not be renewed. It’s politics; it’s policy, is what it is. A lot of things that some school districts require take away from the actual teaching and caring for the children. Not that I’m against policy. I think that that protects children. I think there’s just a need for a greater balance.

Dana Commandatore: Somebody needs to look at the whole education model, and how we’re doing IEPs and the amount of time it takes. I think it’s important to have the teacher’s input as far as the child, but I also think that there are experts and people that have studied this that can offer so much more insight.

Sharon daVanport: You’ve gotta bring Paula Kluth to that school. She will change their way of thinking in a very awesome way. She’s just so great about explaining how benficial and rewarding it is to do this kind of educating.

Dana Commandatore: Yeah. I’m a huge believer in inclusive education for my child. I would never say to anybody else: “You should totally do it! This is the best thing to do for any autistic kid!”

Sharon daVanport: It isn’t always. Some parents have told me that it’s absolutely not in some situations with their children.

Dana Commandatore: No. And that’s up to the parents to really decide. You can’t leave anything up to the school district. Unfortunately, there’s some people that have to, or don’t hsve the resources or the time or the finances to pursue these other avenues. But it’s the parent’s responsibility to make sure that your child is benefiting from whatever environment that they’re in. And that there’s progress. What “progress” and “benefit” means is very different to a lot of people.

Sharon daVanport: That’s very true. Are you going to be able to have this addressed any further? To make sure you address everything that the teacher had challenges with in his next IEP? What is your plan?

Dana Commandatore: [Laughter] Do you wanna know my real plan, or my dream plan?

Sharon daVanport: No, your actual plan. Something tangible that other parents who are having the same issues can say: “Okay, well that sounds good.” You’re very level-headed about this, so it might be good if you share that.

Dana Commandatore: I think it’s very important to approach any IEP meeting with an idea of compromise and open-mindedness. You’re willing to hear the reports and all the terrible and all the wonderful stuff you’re going to hear about your child. Every parent that knows they’re going to an IEP meeting, it’s mentally exhausting. It’s sitting down and being able to listen to the people and take notes, and just make sure that you don’t make any decisions on that day or in that circumstance.

Your mind is in a very different place; you’re absorbing ao much information; you don’t know the intricacies of the law. You have a general idea, hopefully, but there’s so many things that you don’t know. What I like to do is go through everything. There’s so many little things that you need to worry about.

You need to worry about the goals that are constructed for your child: How are those goals being measured? Are they just by observation? Are people taking notes on them? What is the best way to measure the goal? What is the most practical way for the teacher or whoever’s in charge of that goal to attain that goal without annoying them and your child benefiting at the same time? Talk about how often you’re gonna meet to discuss the goals and how they’re going. At what point do you need to re-evaluate them or bring in other alternatives?

Sharon daVanport: Right.

Dana Commandatore: But it’s really important to know what is happening and what you are signing. There’s a great website: Wrightslaw.com Before they walk into an IEP meeting, every parent needs to read it. A friend of mine recently put me in touch with another friend in the my school district whose child was just diagnosed on the spectrum. He was told that he should not bring any outside evaluations in; it will just confuse the issue.

Sharon daVanport: Ugh.

Dana Commandatore: He had no idea. He had absolutely no idea. So he went into the IEP meeting without bringing in any outside evaluations and he signed the IEP. You could always call for another IEP, but you owe it to yourself and to your child to do some research before you sit down.

Sharon daVanport: Tricia’s the queen on IEPs.

[Laughter]

Dana Commandatore: Do you wanna come to my next one? My dream is to get some really experienced parents and some autistic adults in with me. [Laughter]

Sharon daVanport: Dana, this has just been really great. I want you to tell everyone about your website. You not only do videos, but you have a blog. You have some awesome topics that you carry over there.

Dana Commandatore: Well, thank you. My website is (RethinkingAutism.com. I have some videos up there; some of them are suitable for all audiences, some of them are not.

Sharon daVanport: Explain to them why. We don’t want them to think you do porno or anything. [Laughter]

Tricia Kenney:I’m reading in the chatroom and some of the negatives about inclusive education are being brought out by the chatroom people: about being ridiculed and ostracized by your classmates, the whole school; being beaten up.

Sharon daVanport: That’s right. That’s what Dana was saying earlier, Tricia, and I think that the chatroom’s bringing out a really good point. If our children start as young as Michelangelo, they oftentimes are the pioneers that are teaching these other children compassion. By the time they get into those adolescent years, they’re not going to be cruel to these kids, hopefully. Kids’ll be kids, but yes, I do agree that there were times in junior high I absolutely did not have my child in some situations. He was not included and it was my decision, because it was worse for him.

Dana Commandatore: It’s so important that the school administration and the teachers and everybody pay attention to these issues, and are aware that these children are definitely subject to this sort of abuse. It’s up to them to stop it. I know at my son’s school that there’s one person on the playground to watch all the kids. All the teachers are on break and the kids run amok. I would fear for my child if he did not have an aide with him. That’s up to the school district and up to the parents to make sure that that behavior is not acceptable at any level. People will tell you that all kids bully. It is not acceptable.

Sharon daVanport: We’re kind of having to do all this backwards, aren’t we? As parents, it’s like we’re putting our children in a situation and then going behind and having to train the teachers. We need more Paula Kluths out there, and more parents like you, Dana, and your videos. Hopefully we can start distributing them to PBS and to school districts, and teaching and training teachers about taking the lead and teaching their students. Make it a part of the curriculum. Make inclusive education just their style of teaching. If they can do that, then we won’t be doing this completely backwards. And then our children won’t be paying the ultimate price, like the bullying.

Tricia Kenney:The popular kids in school, that’s a pretty small percentage: the beautiful people, whatever.

Sharon daVanport: But they run the school.

Tricia Kenney:Right. Everyone underneath there is gonna be shirked to some extent. To the worst extent comes the bullying and the physical violence and the mental abuse day after day after day. It does need to start with the administration there; it needs to start with the teachers being responsible. What boggles my mind is that so much of this happens on the playgrounds.

Dana Commandatore: Yup. It happens on the playgrounds, in the bathrooms, and on the buses.

Tricia Kenney:There are aides. There are aides out there watching the kids. How does this get past all of these people? I think they’re just turning their heads.

Sharon daVanport: They’re understaffed.

Dana Commandatore: I’ve heard horrific stories about things that go on in bathrooms in schools. That’s where you won’t see me be polite and calm.

Sharon daVanport: I wanna move to New Jersey. I wanna be like the Beverly Hillbillies when they moved to Beverly. I wanna move on to New Jersey!

[Laughter]

Dana Commandatore: That’s where we’re from.

Sharon daVanport: I knew you were from back east. I didn’t know if it was New York or New Jersey. They have some wonderful things going on. We only have a few minutes left, so I definitely want you to get back to your website.

Dana Commandatore: It’s not a charity. I’m not raising money; I’m just raising awareness and giving a voice to autistic people. I purposely don’t mention myself or really talk about anything anecdotal about my life, because I’m trying to give a voice to autistic people, who don’t seem to have one in the mainstream media.

I have a blog where a lot of times I ask guest bloggers to write about their experiences of either when they were diagnosed older in life, or just about their education. I encourage people to e-mail me and tell me their story, if they want to make it public. I will more than happily put it up on my website. I’ve had over 700,000 hits on my site since June.

Sharon daVanport: That is awesome.

Dana Commandatore: So many people have come there, and I’ve received wonderful e-mails from parents and people on the spectrum just thanking me for getting this out there and showing it to people. My goal is for it to be completely all information by autistic people and parents of autistic people.

You hear a lot from parents. Although I do like to talk about it and get it out there, I’m not the one who’s dealing with this. My son is. Until he can either work his way on his own—if he can, hopefully—or if not, I’ll still be there helping him through it. I just wanna give people a venue to speak their mind, that very few people ever get to really see on the outside.

Tricia Kenney:Right. Another good thing to bring up is the Autism Ambassadors. I don’t know if you’re familiar with them at all?

Dana Commandatore: No, I’m not.

Tricia Kenney:They help schools set up a buddy system with autistic kids. They train these other kids—and it’s for every grade, kindergarten on up—and then they can be inclusive and they have at least some support there. They start a group of friends. They get these bonds and this closeness, and they’re all teaching each other. It’s really great what they’re doing.

Sharon daVanport: It’s teenagers who started this back east, and Tricia and are are gonna have them on, probably in about four to six weeks.

Dana Commandatore: Great.

Tricia Kenney:If you can get them involved in your school system to help make that transition and help kids be in an inclusive environment. That’s the goal. What they’re doing has really helped a lot of students on the east coast, where they’ve been mainly working so far. But they’re willing to go anywhere.

Sharon daVanport: They’ve gone to a couple different countries. Hey! They could be in your video. These kids are awesome.

Dana Commandatore: Right.

Tricia Kenney:People should get in touch with these guys. If you have kids that want to be in an inclusive environment and aren’t really being treated very well in it, this might be the answer.

Sharon daVanport: We’re gonna have to wrap this up in a couple minutes, but I just wanna thank you, Dana.

Dana Commandatore: Thank you so much.

Tricia Kenney:Yeah, definitely. It was really great talking with you again. I know we probably talked for quite a while that one night. It was all on the same type of subject, ’cause our kids are around the same age and really have been experiencing very similar things with the public school system.

Dana Commandatore: It’s important to know that we are not alone. There’s so many other parents dealing with this, and it’s very therapeutic to discuss it with other parents.

Sharon daVanport: Before you go, Dana, we’re gonna announce our next show, which is with your very good friend Ari Ne’eman. Ari’s gonna be coming on our next show. The Monday following the Christmas weekend, the 28th. It’s going to be at 7:00 pm Central Standard Time, 8:00 Eastern Time. Ari will be on and we’re gonna be talking about seclusion and restraints, and exactly what’s going on with the legislation that was just passed—something that’s really huge. And Ari’s nomination: we’re gonna hopefully ask him what’s going on with the National Council on Disability (NCD). I’ve head that the NCD is a think tank. They advise Congress on policy.

Dana Commandatore: Yes.

Sharon daVanport: That’s just awesome that Ari’s been nominated.

Dana Commandatore: Yes. It is wonderful. He deserves it. I believe he’s the first publicly autistic person to hold a position like this, and possibly, the youngest.

Sharon daVanport: I’ll actually have an event posted over on Facebook. We’ll start sending out invitations for Ari’s guest appearance. Guess that does it for us, Tricia. I’m about ready to cough, so I’m gonna say goodbye right now.

Dana Commandatore: Thanks everybody, and happy holidays.

Tricia Kenney:Merry Christmas. Happy Chaunnaka. Whatever it is you celebrate, I hope you have a great holiday season. We’ll see you after the holidays are over. Our website should be done very, very soon. Take care, everyone, and God bless.

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