Episode 4: What the Mother of a Child with Autism Wants Teachers to Know

The Cult of Pedagogy Podcast, Episode 4

Transcript

Jennifer Gonzalez, host

[Listen to the audio version of this podcast]

Jennifer Gonzalez: Welcome to Episode 4 of the Cult of Pedagogy Podcast. Cult of Pedagogy is a website devoted to building a community of people who are obsessed with education. If you are a teacher nerd, you will find a home at www.cultofpedagogy.com. This is Jennifer Gonzalez. I am your host, I am also the “boss” of Cult of Pedagogy, and I would like to tell you about Episode 4. It is a special, special episode and I think it’s really powerful. I was reviewing a book a few months ago called The Reason I Jump and it was written by an autistic boy. It’s an incredible book. I urge you to get it and look at our review, but I was talking to a friend of mine who has an autistic daughter, and we’re going to call her Leigh for purposes of anonymity, which I’ll get into in a minute. Anyway, I told her about the book, asked her if she read it. She said she had, but she just wished that people who read it had some actionable items to take away from it.

So I wasn’t sure what she meant. We got to talking and I asked if she’d be willing to sit for an interview, so that we could talk more about what she wishes her daughter’s teachers knew.  So I think you’re going to find a lot of interesting stuff. She initially did not want us to run it because she felt that if her daughter ever heard it she’d be really embarrassed by it.  So we decided that if I bleeped out her daughter’s name, their anonymity would be preserved and it would be okay.  So I am really grateful that she is allowing us to run the episode.  So I hope you enjoy it. I hope you have about an hour to listen. Here is my conversation with Leigh.

[Music Playing]

[Note: Blank spaces will be used in place of Leigh’s daughter’s name, which has been bleeped out for the purpose of anonymity.]

Gonzalez: First I want to get terminology straight, because I know that I learned somewhere not too long ago that is appreciated the most by people who have kids with special needs is if you put the adjective after the person. Does this sound familiar to you? Like as opposed to saying “an autistic child” you would say “a child with autism”?

Leigh: There is, yeah, there is a huge push for people to do that because they want people to see that their child is not a diagnosis first and then a child. I’m lazy. I say “She’s autistic.”

Gonzalez: That’s the thing, it depends on the person too.

Leigh: It depends on the person. It depends on how sensitive you are. I’m not. There are people who are much more sensitive about their children. They don’t want their children to know they have autism. You know, there are sorts of different ways that people parent. We’ve never been that way. Since the day she got her diagnosis, the whole family is like, we use the word autism. She has autism, that’s how she is. We don’t see it as a label. We just see it as a part of her, so you can use whatever you want with me, because I am cool with it.

Gonzalez: Okay. You’re the most laid back person I know on the planet.

Leigh: I don’t know about that.

Gonzalez: I’m pretty sure about that. So if you can just give us a little bit of background on your daughter, in terms of how you started to figure out there may a need for a diagnosis and what her diagnosis is, and just a little background.

Leigh: Okay, when she was an infant, even as early as probably about six months, I knew that there were some oddities. Now, I was with her all the time, so that was what made a difference. Very susceptible to sound and noise. I mean, by the time she was about six to nine months old, we couldn’t use any electronics in the house while she was here. No vacuum cleaners, no blenders, no hand mixers, nothing that made any electronic noise. It would set her off screaming for hours.  So there were little things like that, but everyone else would say to me “Oh, you know, you’re a first-time mom,” because she hit all of her developmental milestones.

She actually, right now, she is diagnosed with classic autism or PDD-NOS which means Pervasive Developmental Disorder: Not Otherwise Specified.  So it’s kind of a catch-all.

Gonzalez: It’s generalized.

Leigh: Yeah, it’s a catch-all phrase for when they can’t fit you into the right box. You know at one year of age, she could say the word no. The thing that was tricky about her was that she could label. She could tell you the difference between an orangutan and a gorilla or whatever type of monkey. She could differentiate between different monkeys. She could spell the words stop and no. She could count up to twenty five. And this was all by the age of one, but you’d ask her for juice and she couldn’t answer. But it was hard to get that across to people.  So if she wanted a drink, she couldn’t ask you for a drink. She couldn’t say “ju-ju-juice.” If she wanted something, she would just sit and cry. If you said “Do you want juice?” she would just look at you. If she didn’t, she could say the word no, but she could not figure out anything past no conversationally. And in fact we didn’t get her saying anything other than no conversationally until she was about three.

Gonzalez: But she would point to things and name them. But in terms of interacting…

Leigh: She could name them. She could name all the letters. She had all that kind of development, which was what made it tricky. And she’s also a girl and we were from a smaller town. You know the ratio, boys/girls, you know. So people kept saying.

Gonzalez: No, what ratios? There are more autistic boys?

Leigh: There are more autistic boys. It’s like 4 to 1.

Gonzalez: Oh wow.

Leigh: Yeah, well, that’s what it used to be. But now, they keep changing the ratios, so sorry, I don’t even know. Now it’s one in eighty nine, one in sixty six.

Gonzalez: The diagnoses are getting more refined, right?

Leigh: Yeah, but when she was getting diagnosed it was one in four.  So I had even mentioned autism to our pediatrician at one point and he said, “Look at her. She’s just very smart and she’s a girl.  So you’re just a first-time mom. You know, you need to read some of these parenting books.” So we didn’t actually get the diagnosis until she was three.

Gonzalez: Okay. How did that feel, having them kind of brush it off and say you’re just being a first-time mom?

Leigh: Well…how rude!

Gonzalez: I mean, did it worry you that, No, there really is still something, I think?

Leigh: Well, I knew there was something. It’s a catch-22 really, because if you think about it, no one wants to hear “Oh, your child’s got this life-long whatever.”  So you’re like, okay, my kid’s okay. The pediatrician said it’s just me. And as a mom, you realize that you would rather it be just you, than your kid.

Gonzalez: But it’s scary to bring your kid to the doctor thinking Something’s not right here, and you want them to say here’s what it is and here’s how you fix it. Not, It’s nothing, it’s your imagination.

Leigh: But you know what? You’ll take your imagination. It was funny because my husband, he had a whole different, like, when she got diagnosed, I was happy. When we finally got the final diagnosis, I was like Thank God, somebody heard!

Now my husband, on the other hand, he kind of lost it, because up until that point he was like, “Things are good.” But then, you know I guess it’s just how you — I don’t know what the word is — I guess it’s how you grow. You know, it kind of slammed him. He was able to ignore it. He was at work most of the time.

Gonzalez: He preferred to just be in a little bit of denial.

Leigh: Yeah, She’s fine.

Gonzalez: But when you got the diagnosis, then it’s a to-do list. Then it’s like, Here’s what I have to learn about, and…

Leigh: Yeah, sort of. It was kind of like here’s a website, you can go out and research. But, you know it makes me feel bad for…you know, we have resources. I’m fairly well-educated, my husband’s well-educated, it wasn’t really a hindrance for us. I’d say within two weeks, I had gone out and purchased 20 books and read all of them. I had my plans, my visual schedules, my this, that, and all the  appointments scheduled. But I could see, you know, there are some families who don’t necessarily have that kind of background.

Gonzalez: It might take them awhile to even realize they need a diagnosis in the first place.

Leigh: It would be a struggle. And you know, I meet families now. I mean I meet people and they’re like “What do you do?” And I just feel like Oh my gosh, because you know they have a five- or a six-year-old that they haven’t done anything with, just because. And I think my daughter has improved – I mean, I think if we retested her, her testing would be higher than what it was when she was three. But that’s because once I got the testing, five days a week she was in therapy, plus I was doing all the home therapies. You know, I got the books. We would do the floor time. One book even said in a twelve-hour day, your child should only have fifteen minutes every four hours where she’s not being stimulated. I am not kidding, where they wanted constant interaction.

Gonzalez: I’m guessing TV was not an option.

Leigh: No TV. No, I wish. Although we did sometimes rely on Thomas, because, oh my gosh.

Gonzalez: Wow!

Leigh: Yeah, I think it was for like a year.

Gonzalez: Well, because I’m doing the math here, because I know your family. I’m thinking around this time would have been when you had your son too. So you would have had a baby, and then an older daughter that you had to keep stimulated.

Leigh: Yes, all the time. Constantly, which is why, you know, he’s got some issues too. Siblings have a rough go, really, because you know he spent most of his afternoons, well, until he was three and a half, he spent most of his afternoons in therapy offices, in lobbies with me, waiting.  So I mean what kind of stuff can you do?  So he missed out on more of the physical. But of course, he’s a better reader. So I mean, he’s picked up other skills.

Gonzalez: So you got her started on therapy and home therapy, and then when did she start going to just regular school?

Leigh: Regular school…

Gonzalez: Yeah, did you just enroll her in a regular kindergarten?

Leigh: We started in an Early Start program when she was three.

Gonzalez: Is Early Start different from Head Start?

Leigh: Yeah Head Start, I think, is a more financial-based. Early Start is developmental-based.

Gonzalez: Got it.

Leigh:  So she started at the preschool in a public school system at the age of three. She did that for three and four. Then we moved her, due to all sorts of issues, to a private Montessori school when she was five.

Gonzalez: Let’s talk about those issues. Were the teachers in that first school, do you feel that they were well-trained? For her needs?

Leigh: No. And, I’m not sure, I think Early Start teachers, well I don’t know, I can’t say this. I don’t work in the school system and I never have. My experience with the Early Start teachers, now I haven’t seen it with the school she’s currently at. There was tons of turnover. In one year, she had three Early Start teachers. I never met the principal, though I tried calling her several times. There were several things that I needed to address. Lots of times, I was writing to the special needs director. They were young. All the Early Start teachers were fresh out of school, which is not a problem, I mean I think that’s…

Gonzalez: But it shows probably a lack of experience.

Leigh: It shows a lack of experience. For some reason they weren’t, you know, the first year, we went through two. The first one, she was excellent. She was really good. She took the time. She tried to get to know all the children. But then when she left, they brought in another teacher. And this teacher, and this one cracked me up. Now as a teacher, this will crack you up.  So she, one night, called me at home, crying on the phone. And she said, “I need you to come over.” I was like, “Come over where?” She was like “To my house.” She had a little boy, and I knew that. She said “I think my son is autistic and I think I would just die.” Now she told this to the mother of…I mean can you believe that? Now, she was young, and I had my children later in life. I can still find it funny. I still, to this day laugh about this conversation, because I was like, Really? Did you really say that to someone?

Gonzalez: She was clearly in the middle of her own head at that point.

Leigh: Yeah and she just wasn’t. Yeah, and a scared mom. She didn’t know what to do. And I told her, I couldn’t diagnose her son, but I would go over and talk to her. So, you know. But that kind of shows you…the things that she was seeing were just things that she had seen my daughter do, but it wasn’t all the time.

One of the things I do as a parent is, before school starts — well, actually, usually I do it after every break too. So if there’s a two-week break — Christmas break, whatever, usually not Spring or Fall —

Gonzalez: Something kind of longer.

Leigh: Yeah. Usually it ends up being about 5 to 7 pages. A 5 to 7 page report as to all of her cognitive levels, any kind of behavior issues that we’re seeing. Like basically I just break down everything. And I give it to the teachers just because I feel like it’s information. Some of them read it, some of them don’t. But I feel like at least they’re given an idea of where the kids are.

Gonzalez: So you do that, you give the teachers that at the beginning of the school year and after long breaks.

Leigh: The really good teacher had read it.

Gonzalez: Now how can you tell she read it? Because I’m guessing that teachers who read it will do things to make you realize she did.

Leigh: Oh yeah, because I’m very specific. I make them extremely detailed. Now, as she’s getting older, I don’t need to do as much. But, I mean when she was four, or five, or even six, I could go down the list and say “These are the colors that she does not want in her crayon box and these are the reasons why, they remind her of x, y and z. These are the sounds that she cannot tolerate and these are the reasons why, because of x, y, z. If you have her near a window, you’re going to experience these issues. Versus if you have her near a fluorescent light, these are the issues you’re going to have. I would get very, very detailed and I could see which teachers…like sometimes you could walk in and there she is next to fluorescent light with a radiator humming in the background, versus, you know.

Or you know, her stimming. Do you know what stimming is?

Gonzalez: No.

Leigh: Stimming is kind of like. It’s called self stimulation and in the Reason I Jump, the book he talks about flapping.

Gonzalez: Yeah, I think I just read that.

Leigh: Okay, flapping or jumping, okay, that’s all stimming. It’s a way that they regroup. Yeah, so if she gets very.

Gonzalez: You said, it’s S-T-I-M?

Leigh: Yes, for stimulation.

Gonzalez: It’s things they do for themselves, to regulate.

Leigh: Yes, yes, and they need that. Now, they can control it. Like _____ has figured out, like when she was younger, really her stimming was she would spin in circles. Like, constantly, spin, spin, spin, spin. She can control that now. She very rarely spins. When she does spin, she spins at home. But, it’s a building process. So like or swinging or flapping. You’ll see a lot of the hand-flapping. And she still, if she gets really carried away, she’ll flap.

Gonzalez: How does that play out with different kinds of teachers? Are there teachers that have different reactions to her doing things like that?

Leigh: Funny you ask, a teacher that we really had problems with had huge issues, huge issues with her stimming. And this was at a private school, to the point where we were having meetings and I was begging them, like I don’t have another place to put her, because it was such a weird spot in the year. Just deal with it. Just please do what you can. I hired an aide to go and sit with her.

Gonzalez: And this was because they were complaining to you?

Leigh: Yes, about the stimming. And the interesting thing is — here’s the key, and here’s the key that I think all teachers need to understand — is people are comfortable with what they know. I know for a fact that in that classroom that the teacher had, she had a little kid that kept biting. Bit everyone in the classroom, just a nasty little biter.

Gonzalez: Was this just a behavioral problem or was he autistic?

Leigh: No, just a behavioral problem, and there was another little kid who liked to hit in that classroom. Again, just a behavioral issue. She had no problem with them, because she knew them. It’s okay, I can understand those kids. They don’t talk funny. So if I tell them not to do it, we all know they’re going to do it again, but at least I know they heard me. Okay, so the teacher didn’t have a problem with them. She had a problem with my daughter because she would spin. She would tell her not to spin. My daughter would stop spinning, but then a little bit later would start spinning again. But she could speak. She could converse, but it doesn’t always sound right. You know, she has a weirder cadence, a weirder rhythm, and she especially in this grade, she was being very detail-oriented. So like you would almost have to puzzle out what she was saying. For instance, I’ll give you an example because he mentions in the book about the details. Well, that is how they see, at least that’s how ____ sees too, in details.

Gonzalez: So the way he was talking about it really rang true to you for ____ .

Leigh: Yeah, now they’re all different, and I think he points out they’re all different. She’s different than others, but you know, for the longest time you would have to puzzle it out. Because she would see like a rubber band and she wouldn’t say “I want the rubber band.” even though she knew it was a rubber band. She would say “I want the pink, heart-shaped object.” And so you would be like, What? And then you’d look all around trying to find a pink, heart-shaped object, and finally you would see. She’d point and the rubber band had kind of twisted into a heart shape.

Gonzalez: And that was what caught her attention.

Leigh: That’s what she wanted and so that’s how she would verbalize it. Or you know, orange slices. You know when you cut up an orange?

Gonzalez: Yeah.

Leigh: She would call them her little orange crescent moons. You know, she’d be like “Give me some orange crescent moons.” Yeah, and so she could speak, but you kind of had to…

Gonzalez:  So this is a characteristic of autism, they don’t necessarily understand that everyone has agreed on using this specific term for that thing.

Leigh: Correct.

Gonzalez: All details are even, and whatever is most interesting at this point in time…

Leigh: Everything’s fair game.

Gonzalez: Got it.

Leigh: Yes, everything’s fair game. And you know, she has really toned it down. She’s gotten to the point where she can leave off a lot of the details.

Gonzalez: But that’s learning. She’s had to practice that and practice that.

Leigh: She’s had to practice it. Yeah. I mean because you know.

Gonzalez: It takes concentration to pick the word that everybody’s agreed on.

Leigh: That everybody wants. Because we only want rubber band, but that’s not what she sees. Actually, if you think about it, it wasn’t what she saw. It wasn’t what I saw either when I looked at it. It was a pink heart.

Gonzalez: So these teachers were having trouble with her stimming, and one just basically wanted her out of the school?

Leigh: Pretty much.

Gonzalez: Wow.

Leigh: Yeah. You know, it was a private school. There’s not a lot of training. I mean, even people who go to training, don’t really go to training. You don’t know it until you live it, or until you’re in it day in and day out. Honestly, let’s be honest.

Gonzalez: So if there were a small handful of sort of skills or understandings that you really wish, you think are sort of bare-minimum things that you wish all teachers had when they had a child with autism in their classroom, what would some of those things be?

Leigh: Patience would be huge. As he pointed out in the book — again, I’m going to keep referring to it — he keeps, did you notice how many times he said he was sorry? Like, Bear with us.

Gonzalez: Yes!

Leigh: That’s ____ to a tee. That child says “I’m sorry” more than, I don’t know, I don’t even know if I’ve said I’m sorry that much in my forty years of life.

Gonzalez: That’s the thing that struck me so much, was how often he talks about feeling bad about making other people…I’m going to read, this is a quote from page 44: We can put up with our own hardships okay, but the thought that we are the source of other people’s unhappiness, that’s plain unbearable.

Leigh: That’s terrible.

Gonzalez: I see this in here so much. I don’t know if it’s because he’s writing this as an adult and he has a different level of awareness…

Leigh: He’s thirteen.

Gonzalez: Was he thirteen when he wrote this?

Leigh: He was thirteen when he wrote that, yeah.

Gonzalez: Okay, well then…

Leigh: Which makes it even more amazing, right?

Gonzalez: So that’s very close to your daughter’s age then.

Leigh: Yeah.

Gonzalez: Well, that’s what I wanted to ask you. Do you see — because it’s everywhere in this book, this sort of feeling so bad and guilty because he’s making everybody else’s life difficult — do you see that in your daughter? Does she talk about that?

Leigh: Oh yeah, without a doubt. She doesn’t verbalize it to the same degree that he does. But then, she’s not writing a book either. But yeah, I see it constantly. There’s not a day goes by that she does not apologize for something. And then sometimes you can even see that she’s dwelling on it. Like, I might — she’s a kid. I mean, let’s be honest, they’re all kids. They’re all messy. They’re dirty. They don’t like to listen to you. So, like any typical mom, I yell, I scream. You know, whatever. My son, I can say it and he gets over it. He says “I’m sorry mom. I won’t do it again.” and he’s done. ____ , every twenty minutes she’ll come back and she’ll say “I’m really sorry I didn’t take my shoes off before I came in the house.” And then at bedtime, she’ll have a little tear in her eye and she’ll say “I’m really sorry I didn’t take my shoes off.” So it’s hard, because it’s like, in the scheme of things you have to punish her, just like everyone else, to learn. But then there’s a part of you that’s like “Oh, I’m scarring her physically and mentally for the rest of her life!”

Gonzalez: She really holds on to…

Leigh: She really holds on to. I mean, it could be weeks and she’ll say “Remember that day I forgot to take my shoes off?”

Gonzalez: That was another thing he was talking about. How memory, it doesn’t like, it’s almost like the same thing as the details with the rubber band. Memories are almost all sort of even. The not liking a certain color, you said that a few minutes ago. She’s not going to want this crayon because that color reminds her of… And everything’s tied to sort of an emotional memory.

Leigh: It’s crazy.

Gonzalez: It’s not the kid being weird and thinking green is a weird color. There’s an experience…

Leigh: There’s something that ties to that.

Gonzalez: …behind that.

Leigh: There’s usually…now sometimes you can find it and sometimes you can’t.

Gonzalez: But it’s pretty safe to assume that it’s there, you just may not be able to understand what it is. But this is not just the child being difficult.

Leigh: No, they’re not being difficult. No. No. I mean just like I used to love sushi. Can’t eat it now, because when I was pregnant I got sick, you know? My husband thinks it’s stupid, but I think that any pregnant person who had that, you know that same thing might get it. And it’s the same with her and their memories. And their memories are so strong.

Gonzalez: That’s what it is. With you, you probably even understand that I could probably eat sushi now and I’d be okay. You could sort of rationalize it out. That’s the piece that may be missing for an autistic kid. They can’t necessarily say to themselves “The green crayon doesn’t mean anything. It really has nothing to do with that memory” because it’s just too strong.

Leigh: Well, and you know as an adult I can just say “I choose not to eat it” and people will listen to me. But when you’re an autistic child, people will say, “Well there’s nothing wrong with this green crayon, so just leave it on the table.”

Gonzalez: That’s an interesting insight. You’re right. Adults pretty much get to do what they want.

Leigh: If I was an adult, I would get up and I would take that sushi and I would put it someplace else. They are at scho.l, required to sit there with twenty other kids, and all the other kids are using their green crayons.

Gonzalez: Again, I’m going to say, just for the sake of anybody listening, I’m talking about this book called The Reason I Jump and it is written by Naoki Higashida and I’m going to be reviewing it on the website. Because we just keep saying “the book.” I think anybody listening is saying “What are they talking about?”

Okay, so what else? What other things do you wish teachers would do more of?

Leigh: Okay, well there’s two things. No, three things. The first thing would be, along with patience of behaviors, and trying to — there’s always with autistic children, I swear, I sit and have lunch with them all the time, they are really polite. They’ve gone through so much therapy, those children know how to behave. It’s impulse control that they have issues with. So be patient with their behaviors, but also be patient with their speech.

Like ____ , we have right now. She’s past all of the beautiful, flowery language and descriptions, and all that. But we have, I call it the Guess What syndrome. Because as he says in the book, sometimes it takes a lot to process a conversation. It takes a lot to get your ideas in order. You know what you want to say, but you can’t phrase it. So what happens with ____ is she’ll say “Hey mom, guess what?” and I’ll say “What?” And then she’ll go “Hey mom, guess what?” and I’ll say “What?” My what is triggering her to have to rethink everything. So really, what she really needs me to do is say “Guess what?” and then I just look at her and then she can continue on with whatever she has to say. But if I ever answer back, I break her train of thought. So what I’ve also noticed a lot of the children with autism, I don’t hear them do a lot of umms and ahhs, you know, they’re just quiet, and I think that people, myself included, breeze over them.

Gonzalez: They get interrupted because people think they’re done talking or they’re not going to pick back up.

Leigh: Even though the sentence isn’t complete. People are just like, as they’re trying to get the rest of the sentence out, they just turn away. Does that make sense?

Gonzalez: It does. I’m trying to imagine myself having thirty students and having my autistic student come up and want to tell me…

Leigh: It would be terrible. I mean I feel it.

Gonzalez: I mean, I know how I am with my own three kids and one of them is talking and the other two need attention. I’m like, Get on with it, you have to say it faster.

Leigh: I know and it’s terrible.

Gonzalez:  So what’s the best approach? Is there something that you can say to her that will…I don’t know.

Leigh: Each kid, each kid is different. I know with us, I usually try to say, if I notice there’s a long pause, I say “Is this important? This is what I need to do right now. Is this more important than that?” If what she’s trying to get out to the teacher is Johnny over there just spit a whatever, I don’t know what kids do in class. That’s why I’m not a teacher. If that’s something that’s not really that critical. But if it’s I don’t understand this and I can’t continue on with my work. Then, they’re going to have to be a little more patient.

Gonzalez: Maybe it’s a matter of…maybe the strategy doesn’t necessarily have to be with that child, it has to be with the rest of the class. To say, when I’m talking to her and I signal to you, that means you need to just hang on a second.

Leigh: Hang on a second and let it go? I mean, I don’t know. I don’t know how much speaking in class she really has to do per se. A lot of it’s rehearsed and scripted anyway. I mean they’re doing small groups and…

Gonzalez: How’s her writing?

Leigh: Abysmal. She’s learning to type right now.

Gonzalez: Is she? Is that just motor control?

Leigh: (sigh)  I…personally? She was in OT for seven years and she still gets it through the school. She has gotten it through the school for two years. And it has not improved one whit. I personally think it’s visual perception. She can form the letters okay. She has the manual dexterity. I mean, the things she can do with her hands…she draws these very ornate, detailed pictures. I think her problem is visual perception. Some of the letters are really huge, some of them are really tiny. She doesn’t put spaces in between her words. I mean we’ve given her guidelines on how to do that, it’s just not happening.

Gonzalez: So the typing is helping at all? A little bit?

Leigh: Well she’s just now learning.

Gonzalez: She’s just getting started on that. She’s in the right decade, or the right era to be…I mean, nobody writes anything.

Leigh: Yeah, just learn to sign your name. Even that’s probably going to be a swipe card, so…

Gonzalez: Okay, you said patience and…

Leigh: Patience with behavior and patience with listening. There’s always a trigger, so always look for the trigger. Now just because, and again I know it’s thirty kids, and I totally get that. I mean I couldn’t do it if I tried. But there is always a trigger. Very rarely do children with autism, at least the ones we know and associate with. There’s always some reason for a behavior. You know they’re never one to instigate. They’re very rarely instigators. They very rarely lie. I mean I think it was just this year my daughter figured out how to lie. I thought my world was ending, I was like Aw, man! For so long I wanted this development. Now I have it and I’m like Aw!

And then the last thing is let the — if the parent is willing to help — let them help. And I know that there’s, I mean like, for modifications. Are you familiar with modifications? Okay, I can’t. I have asked every single teacher, she’s now in fourth grade. I will be more than happy to modify anything that needs to be modified. And modifications. People don’t know modifications very well. I don’t think educators are trained very much.

Gonzalez: No, that’s kind of the realm of the special ed teacher.

Leigh: I’m not even sure they get much.

Gonzalez: They may not. They spend a lot of time learning the laws and everything too.

Leigh: Probably.

Gonzalez: …and how to do the paperwork. But specific modification strategies?

Leigh: And it’s tough too. Until you’ve spent 24 hours a day with a child, or with multiple children, it’s hard to figure out. I’ve seen modifications, and modifications for like, my child are…Okay, so there’s a test, say there’s a test, a science test. Let’s say there’s a science test and it’s the short answer questions in the back. Okay, so what they’ll do when they write these tests is they’ll say “A volcano in Peru is 47 meters high. It’s got this and that and the other and you want to take and see what kind of rock samples do you think you could find.” What about, and so they may talk about the rock samples. And you know, they bury three or four questions in this one little question. Well that’s confusing to someone who’s got visually…who likes detail.

Gonzalez: She’s going to get lost in those details.

Leigh: She gets lost in all those details. So to modify something like that, it would be “In a volcano, answer these questions.” And you know, there’s one, two, three. That’s it. And then she can answer one, two, three. You can even put, in a paragraph form, and she can get, “Oh I write one whole paragraph and I have to hit all these parts.” But if you just have this random, long…Does this make sense?

Gonzalez: Yes, yes. It does.

Leigh:  So we see modifications. Like when I see modifications come home, like I see a modified test. It’s the same test that all the other kids have.  So maybe there’s a multiple choice question and they’ve used a black sharpie and they just mark out two of the possible answers. Which is a joke, because to me that’s true or false. You know? And it’s visually just confusing. If you think about a paper that has all these black marks.

Gonzalez: And that’s a really common kind form of modifying, just taking four options and taking it down to two. Making it a 50/50 chance of getting it right.

Leigh: And that’s crazy, because my daughter is average intelligence. She doesn’t need that kind of modification. She needs the work.

Gonzalez: She might need it delivered in a different format sometimes.

Leigh: Sometimes she just needs the extraneous hoo-ha weeded out.

Gonzalez: The details.

Leigh:  So and let me tell you the last one. And the last one is don’t ever, ever, ever underestimate them. And he proves…I mean you’re talking…If you read more about him, he basically is unspeaking. Until he learned how to type, he couldn’t communicate. But, oh my gosh. It’s beautiful. His prose is amazing. Eloquent. And that’s what I see the most with ____ is that people underestimate her. My problem, now I’m a different parent too. I’m kind of a sink or swim parent. There are some parents who are more…when they go to IEP meetings, they request more services.

Gonzalez: Well and that’s the thing we didn’t cover. She’s definitely, fully, completely in the regular classroom, right? Does she get any pull-out services or anything?

Leigh: She gets speech once a week, where they just work on social situations because social skills, she, yeah, they all have social, you know. Just because, she doesn’t get figurative language. She doesn’t get idioms. If somebody says “I fell and I did a number on my knee,” she says “What number?” You know, she doesn’t get that stuff. That’s why she goes to speech. She gets OT twice a month, but it’s in the class.

Gonzalez: Oh, okay, they just come in and work with her.

Leigh: They just come in. And then she does get pulled out for math. That’s the only thing. She gets the concepts, she does all grade-level work in math. They just found that it’s not her favorite subject, so she’s a little more easily distracted. So they pull her out to have her in a smaller classroom where there’s an aide that can keep her more on task doing the math work.

Gonzalez: Does she, do you have an IEP meeting every year to re-asses?

Leigh: Every year, yeah.

Gonzalez: So when you mentioned a few minutes ago about never underestimating her — how has that played out? Where you have seen the underestimating? Have there ever been any teachers who have really got that concept and have really pushed her, and you saw her really blossom under that?

Leigh: I’ve seen when, one teacher actually said to me at the end of the school year. She said, “You know I hope I did okay with her. I’ve never worked with anyone with autism before. This was a new one for me. I just had to treat her like every other kid. And she did fine.” And she did. In that year, she accomplished probably more than, and she was more accepted in the classroom, than any other year she’s ever been. That’s the thing, especially with my child. Now, they’re all different, again, and every parent knows their kid better.

But, I’ll give you an example of something that just happened recently, which I was just floored with. I went and had lunch with my child. After lunch, they all line up and apparently they’ve started some new thing where they all have to line up in a very specific spot, like a square. So they all have to have their own square. I assume it’s so that they’re not touching, kicking, hitting, licking. I don’t know what, who knows sometimes.

And so the kid was going down the line, there’s like a little monitor who checks to make sure that everyone’s in their square. Checks everybody, passes ____.

And so I said to ____ , “Where’s your square?” and she goes, “I don’t know.”

And the kid looked up. He goes, “Oh, she doesn’t need a square.”

And I was like, “What do you mean she doesn’t need a square?”

He said, “Well, she doesn’t have to stay in a square, because she’s…you know…” and gave me that kind of you know look like, you know, she’s special needs.

And I said, “She can stand in a square.”

And he goes, “Well she doesn’t have to though.”

I looked at ____ and said, “Can you stand in a square?”

She goes, “I think so.”

And I was like, “Can you just give her a square?”

He goes, “But she doesn’t have to be in one.”

And that sets the tone. She can stand in a square. She can go down to the office and pick up papers. She can do all the things that the other children can do. Sometimes you might need to give her — and I get it — sometimes you’re in a hurry, you might not want to take the time to make the instructions so precise. But I think her acceptance in the classroom is going to be based on the acceptance of the teacher. If you create a divide — she doesn’t have to have a square because she’s different…

Gonzalez: So the teacher can really set the tone with that, where if the teacher were…because we don’t know if that kid got that instruction from the teacher, saying, you know…

Leigh: Or if they just created it.

Gonzalez: But we don’t know. So the teacher could reinforce what you’re saying by, if she heard that, saying “No, make sure that ____ is also in a square.”

Leigh: Yes.

Gonzalez: Sort of communicating expectations in a way that’s non-judgmental and…

Leigh: Yeah, she needs a square. And I think that’s probably a critical part, especially when they start getting older, kids notice differences more. You know, Why does this person get this and I don’t? Well, and then it turns negative. We all, you remember back to your…I remember what kids would say. And the key is just to let them blend, and they can blend. I mean they are such little rule followers, because, again in the book The Reason I Jump, they memorize these rules just to fit in.  So you give them rules and they’ll do it. I mean they’ve got, I mean they’ve got it down. Now you do individually get personality things, because they’re still kids. But in general, you can give them a square, they’ll sit in a square. You teach them how to take the attendance down to the office, just show them once or twice, they’ll do it just fine every other time. Now, they’re never the kids who get picked. Does that make sense?

Gonzalez: Yeah, and they know that.

Leigh: They know that and the other kids know that.

Gonzalez:  So does she talk about that? Because you had mentioned that when we started texting about this book. One of the first things that you said is that people should read it, but then it needs to come with actionable items.

Leigh: Yes, well, yeah.

Gonzalez: And you talked about her feeling left out, that that’s an issue lately.

Leigh: It is. And you know, one of the things I’ve noticed is um… at the school where she’s at…[silence…crying] …I’m sorry.

Gonzalez: It’s okay.

[silence]

Leigh: Okay, there’s…shunning. You know, it’s like a form of bullying.

[silence] … I’m grabbing a tissue…Okay, you better edit this part out.

What I’ve noticed is that children in the classrooms, they almost write them off. For instance, I do a lot of flash cards. I go in and do flash cards with kids from all grades, just to help them practice. One child was really fussing about doing these flash cards, and she’s a fourth grader. And I said to her, “Well you know what, ____ doesn’t like doing these flash cards either. But it’s just part of life, you just gotta do them.”

And she goes, “Why does ____ need flash cards?”

I said, “Why wouldn’t she need flash cards? She’s gotta learn math too.”

And she goes “No she doesn’t, she’s special needs, they can’t do anything.” And she’s speaking about a child who’s in general ed. So that goes to show she’s not getting a clear enough picture. I mean ____ does the same homework that she does. Does everything identical. We get the same workbooks, the same tests, all that. But, somehow she does not see her as needing, as doing anything.

We used to, when she was complaining about not having friends…I would make little lists in the morning. So you’re going to pick three people and let’s ask them these questions. You know, we’ve talked about how to be a friend. We’ve read all the friend books. Special needs friends book, American girls friends book. Ask them about their favorite music, that kind of stuff. And so we’d make all these little lists and she’d come home and say, “Nobody would answer me.” I thought to myself, I thought she was just lying, because that was a new skill.

So I thought to myself, okay, she’s just not asking and I need to push her. One day I went and I was watching. Lo and behold, I watched, she went up and asked a child and they literally looked at the ceiling. And then she asked him again, and she said their name and then they looked the other way. And then she asked them a third time and then she walked away. And so…[silence]

Gonzalez: That had to be really hard to watch.

Leigh: Yeah, yeah. [silence] …I’m sorry.

Gonzalez: Don’t apologize. You have always impressed me so much by how much you…how positive you are and how well you hold it together. Honestly, it has to be, I just always imagined that there had to be some really strong emotions behind it all.  So don’t be embarrassed.

And I mean I’m going to talk to you about this later, but I would want to not edit this out, only because I think a parent who has a child with autism, listening to this, if they only hear, strong, got it together, positive, everything’s fine, it’s the same thing as when you have your first baby and you meet parents who say “Oh, she slept through the night at seven weeks and we’re having no trouble nursing.” And it’s like Oh, f***, what’s wrong with me then? If you’re cool and everything’s great, then something’s obviously wrong with me. So I honestly I think, this is what has always helped me when I have struggled with having kids, or being married, or anything that is hard. It never helps me to hear somebody who’s like, “Well here’s how you do it and it’s easy.” It really helps to hear someone say “Well it really sucks sometimes and it really is hurtful and it’s painful and it’s hard.” Then, it’s like, okay, I can cope with it because I know other people have also.

Anyway, so okay…did she try this with lots of other kids?

Leigh: Oh she tried it with several kids, several kids. You know it’s, part of it is fourth grade. Part of it, girls are mean. I mean let’s be honest, girls are mean. Yeah, so we tried a lot and we’re slowly trying to figure out options. Luckily the school’s been pretty good about helping. Or about letting me do what I feel is right, if that makes sense.

Gonzalez: What is, what would that be?

Leigh: I’m going into the school every day and having lunch with her. But I’m not just pulling her, I’m pulling all the kids in her grade that are special needs. So we have a big, little party every day. And the reason being is because they’re comfortable around one another. They’re all the shunned ones. You know that when you sit at the table and you sit and you see them eat. Literally, I would watch her if I was doing something else at the school. I could go past and she’d be staring at the wall with her back to everybody, and just eating..[silence]…which is heartbreaking.

The saddest thing, the saddest part is that we expect these children to develop social skills…but how can they?

Gonzalez: …if no one else is receptive. We have to have all the other kids develop the social skills in response to them.

Leigh: Pretty much, because there’s only so many times that I can say, “Go talk to someone.” These are the conversation pieces.

Gonzalez: It can’t be all on her to do that.

Leigh: If no one responds, there’s nothing to do. Now, you put her with an adult, she is great. She can talk up a storm. You know even at the grocery store, she’ll ask little old ladies, “Do you need some help with your stuff?” I mean I’m like constantly trying to rein her in. Because she’s comfortable, and adults are good about giving patient listening.

Gonzalez: Well because adults have good social skills. All kids have crap social skills.

Leigh: They do all have crap social skills.

Gonzalez: I have this trouble with my second daughter because she doesn’t know how to make friends with other kids. And she’ll see her sister have a playdate and she’ll say, “Can I have a playdate?” And I’m like, “Okay, who do you want to call?” and she can’t think of anybody. And I’ve watched her try to have conversations. It’s the same thing with her with adults. And I’m not trying to say it’s the same.

Leigh: All kids…

Gonzalez: She and I can talk no problem. She can talk to our adult friends, but try to get her to talk to another eight year old and it’s like “What do you want to do?” and they don’t talk back either.

Leigh: It’s hard. I know. It is the exact same thing. You say you don’t want to compare. It is truly the exact same thing. And when I was talking to the school, I said “You know, I’m going to start this and I’m going to start it just to help her grade.” Because I’m hoping, the hope is that these children will start to enjoy lunch. And they do. They’re very chatty. They’re just having a ball up there.

Gonzalez: Are they?

Leigh: Oh, they went from little zombies, eat my food, sit and stare at nothing. They’re up there and they won’t start talking when they’re up there. They’re just in their own comfortable setting. You know the goal is eventually, hopefully, to get other kids — what they refer to as neurotypical, normal, whatever — to get involved. And want to come up and spend some time with them and see that they are fully functioning children. They just need the skills.

If you look at a school cafeteria, you can pick out probably about ten kids in there who don’t have a friend, and they’re not all special needs. They’re just lonely kids.

Gonzalez: They’re not. One of the things he talks about in here…he talked about how…he said We can’t do the thing where you talk critically about things. He was talking about how they only understand how to sort of describe things, and talk about things being interesting or beautiful. But, when people start to criticize something, they don’t get that concept. Picking people apart or…

Leigh: They don’t get being mean.

Gonzalez: Yeah, and that might be a big piece to why it’s hard to form a friendship. If I think about if I watch my daughter interact with other kids in that grade, it’s a lot of “Oh, you’re a dufus!” They tease each other and stuff like that.

Leigh: And they’re already gossipy.

Gonzalez:  Yes. So it’s, it’s criticizing other kids who aren’t there, It’s teasing each other face to face, and a lot of those…It sounded like from what he was saying is that that’s a wavelength that autistic people just don’t even understand. They don’t understand that sarcasm and teasing, do you know what I mean? That kind of humor and that’s…so much of friendships at these ages are based on that.

Leigh: I think they can…I am a pretty sarcastic person. Really. As my son once told my mother. He said “That’s okay Grandma, don’t worry about Mom, she just likes to mess with people’s heads,” when I was being sarcastic. So she gets it, she gets it, and she gets it from me. She only gets what she’s used to. What she doesn’t get is that emotionally charged. There’s a difference between just sarcasm and kind of random teasing and that emotionally charged teasing.

Gonzalez: She wouldn’t necessarily be able to pick up on the difference?

Leigh: Yeah, so you call somebody a dufus. A typical fourth grader, they’re laughing about this other fourth grader and blah blah blah, so they call him a dufus. Kind of funny between the girls. The guy probably doesn’t really care too much. But that is an emotional charge. She wouldn’t get that. She would think they’re being mean.

Gonzalez: She wouldn’t get that they’re flirting, basically.

Leigh: Yeah, yeah, that is totally it. Yeah, we’re not there.

Gonzalez: And that’s so much of what they’re talking about right now. They’re making fun of each other for liking certain guys.

Leigh: He likes her more than me and she likes. I mean I’m kind of glad she’s not there. But, yeah, that’s just so foreign. She’ll never get that I don’t think. I mean, she might. I don’t know. But you know in a way, it’s kind of refreshing.

Gonzalez: Well, yeah, no kidding.

Leigh: Because you know where you stand.

Gonzalez: Yeah, that’s…a lot of things are very literal. Everything’s very literal, right? So there’s not a lot of…

Leigh: There’s not a lot of wiggle room. She either — A lot of people say some of the rudest people they know are people with autism or Asperger’s. I get that and it’s just because they don’t feel that they need to waste — and she’s this way too — she doesn’t want to waste her time or her energy on something. Like sometimes, my husband will come home from working twenty four hours and he’ll stink to high heaven. He’ll go to give her a kiss and she’ll be like “You smell, don’t come near me.” Whereas my son will be like, “Okay, I’ll take your stinkyness.” Which may be a boy thing. I don’t know. You know not many children would; most would probably grin, grimace, here’s my cheek. She’ll be completely honest.

Gonzalez: She’ll be completely honest because that filter isn’t there.

Leigh: You are not to come near me because you stink and if you do I’ll throw a little fit if you do. And that doesn’t fit into the social world, really.

Gonzalez: How would it — and this probably definitely would vary from parent to parent, but you could at least give me your perspective on this, because I’m trying to think of ways that teachers can help — with the whole idea of strategizing with the class as opposed to… If you found out that one of your daughter’s teachers had had a meeting with the class while she was pulled out for something, to educate them a little bit about autism. This is why she does this sometimes and this is why she does that, to help them to better understand some of the things that she does. Would it appall you that they did that, or would you have preferred they take a different approach? Would you appreciate that or..?

Leigh: I honestly don’t mind. I think I would ask her if she would like to be in the class.

Gonzalez: Would that be uncomfortable for her?

Leigh: I don’t know if it would or not.

Gonzalez: To be on the spot like that…?

Leigh: See I don’t know. She’s funny because she knows that she’s different and she doesn’t want to be different. So she gets kind of funny that way, but you know we’re pretty laid back about it. We’re like you’re autistic, yeah. You’re also _____, yeah. You know, you’re a girl. So those things, so for us, I don’t know because I don’t think she would feel weird about the fact that it was autism, more so than it’s weird having anyone spend twenty minutes to talk about her. I also feel that, I don’t know, I’m kind of of the mindset that when you pull somebody out of the class to talk about something…

Gonzalez: …I’m trying to think of a way…

Leigh: It almost makes it like, “Okay I’m going to tell you guys this about her, because you know…”

Gonzalez: So it would be better to have her participating in it.

Leigh: Heck, if it were me, I would have her stand up and talk about it. Now, could she at the age of five? I don’t know, probably not, but she could participate in some way. She could participate even now in some way, maybe not to the same degree. But you run into risk, especially in the public school system. There’s lots of kids in one classroom. There’s more and more being diagnosed. So I think that in her class there’s two or three.  So would all parents agree on this? I don’t know.

Gonzalez:  So because, it seems like for a lot of kids, for a lot of people, they want to do the right thing and they don’t know what that is. And you were saying before that people are more comfortable with things that they know.

Leigh: I completely concur.

Gonzalez: A lot of kids, because I’ve heard even my own kids use the term special needs, and just say “Oh he’s special needs.” You’re right it’s used for a catch-all excuse for anything they do.

Leigh: Anything they do, I mean, my gosh they could be dirty, “They’re special needs.”

Gonzalez: The thing is all the kids in class know who is special needs, and it is…it’s almost like that’s a blank check for…whether it’s that they don’t have to do the regular work or we excuse this behavior, whatever it is. And if the kids could learn a little bit more about individual kids… It almost seems like each teacher needs to have the whole class get to know the whole class very well at the beginning of the year. So whether it’s a food allergy, or if it’s a diagnosis of autism, or if it’s just I’m just really quiet or whatever. Then that would just blend in with everybody’s individual preferences and needs. I just I’ve heard my own kids say that exact same thing where it’s just…

Leigh: Oh yeah, I’ve heard my son say it.

Gonzalez: It sounds to me like a lot of this comes down to the individual family and the individual child. Would it, have you ever had a teacher at the beginning of the year, because you were talking about this sort of extensive document that you prepare every year for the new teacher. Have you ever had a teacher approach you and ask you questions about your daughter and what’s the best way to…

Leigh: Never.

Gonzalez: How would that make you feel?

Leigh: That would be fine.

Gonzalez: If they set up a meeting and said they want to get to know her better?

Leigh: I would think that would be great. I just don’t think they have time, honestly. Let’s be honest. I give them the document just because I’m hoping that in among the several thousand other pages of stuff they have to fill out at the beginning of the year, they might take the time to read it. You know they’ve got thirty kids, thirty kids that they learn about. Generally my daughter, and a lot of the children who function at the same level she is, they can cope. They can sit in their desk and really not be a problem.

Gonzalez: Otherwise they probably would not be fully mainstreamed the way they are.

Leigh: Right, so they just get…they’ll never get to know her per se, because they’ve got twenty nine other kids that are demanding of them.

Gonzalez: And that’s in elementary school. When she’s in middle school they’ll have one hundred thirty other kids.

Leigh: Exactly, and those kids demand attention. Those kids when you sit down at a lunch table, they’re like…whereas you sit down at a lunch table she might look at you and say “Hi.”

Gonzalez: But at the beginning of a school year. If I’m a teacher and I get a list of thirty kids, and two of them — I’m assuming I’m told by the IEP that shows up at the beginning of the year, that should show up — she’s autistic. That maybe this would be a time to even just send you an e-mail and say “Hey, I’ve got your daughter. We’re starting in a week. What can you tell me about her?” and start a dialogue.

Leigh: Oh my god that would be fantastic. I would say that most of the time, most of the parents of children who are in a mainstream situation, I’m willing to assume would be very responsive. How’s that? Is that a nice, politically correct statement?

Gonzalez: Well the thing is, I can’t imagine. As a parent myself I can’t imagine reacting negatively to getting that kind of an e-mail just saying I want to get to know your child better. There are probably some real neutral ways of asking some introductory questions that can get the ball rolling at least. You know what do I need to know about her personality? It sounds to me like things change and evolve over time, so it sounds like the questions should be “Where is she right now?”

Leigh: Yeah, yeah. What’s she doing? But you know what, here’s the thing. You could have students do that. I mean I am, you know I’ve done lots of research. I’ve done the looking and they always say that actually, in a truly inclusive classroom, in a truly inclusive, which is both socially and academically inclusive classroom, the students who are typical perform better, as do the special needs students. They all perform better academically and the reason why is because the typical students are so involved in helping those special needs students stay on pace, that they are reaffirming. They’re doing the work again. They’re helping.

Gonzalez: They’re teaching and it’s getting reinforced. Yeah.

Leigh: It’s almost like a Montessori kind of principle, right? The older builds up the younger. Well, in a truly inclusive classroom, that’s what they say happens because those students are really working together. They understand. They are going to understand the quirks of all of the students. They’re going to understand that for some reason, my child, cannot for the life of me we have not figured out why, cannot figure out the difference between odd and even. They’re all numbers. She doesn’t care about odds and evens. But you know she can calculate the perimeter and the area and do all that other stuff. She has weird chunks missing. Kids who work with her would know that. Kids are good that way. They can, if they work together, they’re going to find out more about one another. Always, that’s why they put kids in small groups. Short, small groups isn’t it? Small groups? I don’t know what the new lingo is. Whatever. You know, they put them together in that so that they can learn how to work with different personalities, right? So if you can really start at the beginning of the year pairing these kids up and making them work in small groups. I know that they do some of that, but I don’t think it’s structured.

I was reading about a teacher who once every week she had the kids write something about their favorite thing that happened that week, the worst thing that happened that week, how they’re feeling. It was like one of these parent letters, but apparently it wasn’t a parent letter. She took them all and then that next week, she would match up who needed a friend, who was in a fight with who.

Gonzalez: This was just on Facebook not too long ago.

Leigh: Yes, yes, but I read that…

Gonzalez: She had the kids basically tell who didn’t sit with anybody at lunch. They were almost reporting on the kids who were the most needy.

Leigh: She knew who was blending, and she was able to maneuver that. There are kids — I laugh all the time because my husband says, “You know you’re like a hawk, just searching out prey” — because you can tell. You can tell who would be a good friend. That’s the kind of personality you need. You need a patient personality. And the teacher can control that a little bit better.

Gonzalez: Oh yeah. They can pair them up.

Leigh: I mean they can pair them up and really start to push those…

Gonzalez: Because sometimes that really caring, nurturing personality also doesn’t do well with the dufuses and the gossipy girls. They don’t like that either. So it’s a good…

Leigh: So you can, you can. I mean it almost seems like Brave New World-ish. You can create your own little…

Gonzalez: You’re manipulating social order.

Leigh: Yeah, yeah. You can. You can.

Gonzalez: But that’s part of the job of a good teacher, is not just letting the chips fall where they may every time. It’s helping kids discover opportunities basically, and grow. And they can grow from interacting with each other.

Leigh: Completely.

Gonzalez: You know a couple of minutes ago when I was talking about talking to a class, pulling the kids out. I almost think that as part of the guidance program, they could choose a group. Say, you have a school that has five hundred kids. You could choose a group of a hundred kids, in different grade levels. Or maybe just fourth and fifth graders or something who exhibit that kind of sensitivity and patience and they could be trained a little bit. They could be taught about what autism is. They could read this book. This book’s not hard to read, you know what I mean? To where they could almost be kind of trained as ambassadors. It wouldn’t be a publicized thing. Where they’re really well educated basically.

Leigh: Funny you mention that. Because we’ve been having so many issues, we have had discussions with our guidance counselor. Basically what we’ve been talking about is the student _____ team. They, I have specifically requested. Now I said the kids still need to get up and make their speech. They still need to do whatever. They are a huge percentage of the population, so I’m like why aren’t they on student council? I mean they are a population and so they’re looking into including that.

Then next fall, I am going to come in and I’m going to lead — it’s going to be a community service organization. We’re going to pull the kids that we think are…we’re going to pull the fringe, does that make sense? Not all of the fringe, but we’re going to pull what fringe we can because it’s just me. We’re going to start with just fifth grade next year. Out of class one day a month, one day a…I don’t know we haven’t worked out the details. Those kids are going to decide upon a community service project. They’re going to have to plan it. They’re going to have to organize it. They’re going to all have to work together. Then we’ll go on a little field trip and do whatever little community service. It’s a way to get all of those individuals working together if you see, in something that’s a little more fun. So that’s what I’m working on over the summer.

Gonzalez: That’s really cool.

Leigh: We’ll see. It could be. It could backfire. But the fact is that at least we have to try.

Gonzalez: I think it could be great because I think a lot of times — I think it goes back to this idea of crossing out two answers on a multiple choice, the modification — Well, it’s just something we’ve always done and we don’t have any other ideas, so let’s just do that. When someone comes up with something else that’s creative, you should try it because that could be a really great piece of the puzzle.

Leigh: If the kids can all fit together, you know.

Gonzalez: Have you had any pushback from this idea of pulling fringe kids together? Anyone saying, Oh, that’s going to make them more ostracized by lumping them all together.

Leigh: More fringe?

Gonzalez: Right.

Leigh: You know, I struggle with that. I do struggle with that. Now the interesting thing is, when all this started, you know, I started pulling all the kids at lunch, we started having kids ask to join us. I mean it started off as four kids I knew. Obviously if you’re a parent at the school and you’re involved and you have a special needs kid, you pretty much know all the kids anyway. But I knew four that my daughter had specific contact with. So I would pull those four. One of them, I kid you not, she is so smiley every day. I mean literally, I’m attacked in the hall when they see me now because they’re like “You’re here for lunch again. I’m so excited!” But the interesting thing is the group is growing. It was like a week after it started, a little kid just came up and said, “Can I come sit with you too please?” And I said “Yeah, sure.” So I think we’re now at like eight and it just keeps growing. Sometimes, they’re like, you know. One little girl is just a lonely little girl. She’s not in special needs. She’s just lonely and so she just wants to come up too.

Now the sad thing is, that you know, it could be so much more because there’s so many other kids. There’s a boy in their class who would be considered severe autism, non-communicative. He’s there. You know he is. He just hasn’t found a way to speak. You know he’s just miserable. I would like to get him up, you’re talking, then I’m starting to really…I wouldn’t be able to control the group.  So I have to keep it eight or less, because otherwise it just…they get lost. The whole purpose is that they socialize and I think I can’t monitor more than eight.

Gonzalez: But it does. I think it should spark an idea with other people that he doesn’t have to be at the end of his lunch table all by himself. They may be able to rearrange some seats so that maybe he’s going to be put together with somebody else who’s going to…

Leigh: Or the saddest thing, just ask kids to say hi to him. I mean honestly. I mean, you know? That’s the thing that I’m always amazed about. If you read the book, The Reason I Jump, and then you are sitting there thinking this man, or boy at the time, was non-communicative except through typing. You think, how often do people talk about things in front of him. How often did somebody say, “Hi, (whatever your name is)? How are you doing today?” If you have a conversation with someone. Yeah, it’s not easy because nobody’s responding back.

Gonzalez: It may be the aide who works with that kid can help other kids learn how to interpret anyway. How do you communicate? Because that label of non-communicative…I’m guessing his parents know how to communicate with him. Do you know?

Leigh: And he comes in, sits down, eats his lunch. He has learned that, so you can’t tell me he doesn’t know. There are barriers for children with autism. All children with autism have barriers.

Either it’s the sensory issues, the processing, there’s barriers. But if you see one and they’re functioning in society, even if they’re not speaking. Can you have a conversation? No, but you can say hi. You can tell her that she looks pretty that day. There’s all those things. Just…

Gonzalez: Just letting them know that you see them. You know they’re there. You’re happy that they’re there.

Leigh: Exactly… So, my two cents.

Gonzalez: Thank you.

Leigh: You’re welcome.

[Music Playing]

Gonzalez: Thank you so much to Leigh for giving me your time and for being willing to have your story shared. I think it’s going to help lots of people. If this is your first time hearing about Cult of Pedagogy, I would strongly suggest you come on over to the site, www.cultofpedagogy.com, and you’re going to find all kinds of fantastic stuff for teachers. Thanks so much for listening and have a great day. ♦

[Listen to the audio version of this podcast]