Advocating for Full Inclusion: Every Student Deserves Belonging with Sandra McElwee ~ 1329

Sandra McElwee: Everyone can be fully included. Everyone. I’ve seen students with ventilators, non-verbal, in the room. It benefits the typical students. Probably more than it benefits this person with a disability in many cases like that.

The students in the typical students in the classroom are the future doctors. They’re the future teachers, the ones who are gonna hire a person with a disability. If they have not been exposed to anyone with a disability in their whole life, why would they ever hire someone?

I don’t know where I saw it, but at some point I read that you have to have a sense of belonging before you can even learn.

And that makes sense. Mm-hmm. Because if you’re being bullied or if you feel like an outcast, you’re more worried about that than you are opening the textbook and seeing what’s next.

Hi friends. Welcome back to Think Inclusive, Real Conversations about building schools where every learner belongs. I’m your host, Tim Villegas. Today’s episode is about refusing to take no for an answer. You know that parent at the IEP meeting who walks in with a binder full of sticky notes, a plate of warm cookies, and a quiet willingness to file for fair hearing if they have to.

Yeah. That energy. We are talking about what it actually looks like to advocate for inclusion year after year, school after school, without burning out or backing down.

Who better to walk us through that than Sandra McElwee. You might know her as Sean’s mom from the A&E show Born This Way. She’s also an author and independent facilitator, writing person-centered plans in California, and someone who’s been in the inclusion trenches since her son was a baby back in 1993.

In our conversation, Sandra and I talk about what changed her school district’s mind, the role evidence and relationships play in advocacy, and why belonging has to come before learning. And stick around to hear how she once turned a summer inclusion institute into her secret weapon.

Before we meet our guest, I want to tell you about our sponsor. This episode is brought to you by IXL. IXL is an all-in-one platform for K-12 that helps boost student achievement and empowers teachers and tracks progress in one place. As students practice, IXL adapts to their individual needs so that every learner gets just right support and challenge, and each student gets a personalized learning plan to close gaps.

Check it out at ixl.com/inclusive. Again, that’s ixl.com/inclusive. All right. After a quick break, it’s time to think inclusive with Sandra McElwee. Catch you on the other side.

Tim Villegas: Sandra McElwee, thank you so much for being with us on the Think Inclusive Podcast. How are you doing?

Sandra McElwee: Well, every day I’m stunned with what our administration has going on, but other than that, I’m fine.

Tim Villegas: I don’t think you’re the only one that is stunned. So, I appreciate you taking, I know you’re busy, so I appreciate you taking time to speak with us.

This is the first time we’ve had a conversation, but I’ve known about you and Sean and your work for a very long time. And I don’t really know how much our audience knows about you, but I would love to know, you’ve been an advocate for a long time and what pushed you into advocacy?

Specifically around inclusive education.

Sandra McElwee: So Sean was three months old when our early intervention program had a professor come in and tell us about inclusive education and the changes in the law. This was 1993, so at that point, the law had already been in effect for three years, and she introduced it to us and I went, ah.

Perfect. That’s exactly what I want for Sean. And so I thought five years later when he went into kindergarten, it’d be all in place, but that was not the case at all. And so I realized about preschool time, because I didn’t want him in a segregated preschool, that it was not in place. And so I started studying and I made it a priority to learn as much as I could.

Before that IEP transitioning to kindergarten. And I did a lot of things to prepare for that. So that was really when it became—

Tim Villegas: Well, so let me ask you a question about, because you said that somebody told you about the law. What law are you talking about? Are you talking about like the reauthorization of IDEA?

Sandra McElwee: No, IDEA original, the 1990 IDEA.

Tim Villegas: Ah, when it changed to IDEA?

Sandra McElwee: Yes.

Tim Villegas: Right? Yes, correct. Gotcha, gotcha. Okay. Okay. Yes. Yeah. And so you were thinking, great, this means that Sean and anyone else can have an inclusive education, right?

Sandra McElwee: Yeah, that’s what I thought. I was a little naive.

Tim Villegas: That’s really interesting because I think, well, you know, the law hasn’t been reauthorized for a long time. But I think if you are coming into this world, right? And you read the law and someone explains the intent of the law. You’re like, well, of course, of course we should have learners with and without disabilities learning together side by side.

And of course, my child should have the supports in general education, but that is not—it’s still not the norm.

Sandra McElwee: No. And it’s really disappointing when I talk to young parents and they’re still fighting and very discouraging fighting in the school that Sean converted to an inclusive school.

Mm-hmm.

When he was in elementary school. The way we did it, I studied the law. We have a organization in California called Disability Rights, and they have created basically the law in layman’s terms. And it’s a book. Or it’s on the computer now, but back then it was a book.

Right? And it had each law and then it described it in layman’s terms so anybody could understand it. Well, I had Post-it notes all over on it. And so I would put that on the table at the IEP meetings and when they came up with some objection, I’d look at my Post-it note. I’d open it up.

Well, according to the law, it says so. So anyway, that was how I prepared. And then I also joined the community advisory committee for the special education local plan area. When Sean was three, so I could get to know the director of special education for the district. And even in that I was advocating for full inclusion.

They would always give this report of what all the special ed classes were doing, and it was all field trips and wasted time in my opinion, no education. And then I would say, well, what are the inclusive students doing? They were like, uh,

So that’s, you know, so basically the director of special ed knew that that was our goal and there was no wavering from it before we even got to an IEP and IEP to go into kindergarten, ’cause there’s no inclusive preschool, ’cause typical kids don’t go to preschool in the district.

So when we got to that IEP meeting, well before I, his teacher told me they’re saying that he can’t have an aide. If he wants to go to general ed, he has to go without an aide. If he needs an aide, they won’t, you know, let him go. And I go, okay, thanks for letting me know. So I went into the— and I said, and then I sent a letter and said, the director of special ed needs to be present at the IEP.

If she can’t be present at the current date, we will reschedule. So she was there and the poor preschool teacher was—so he, to just to clarify, he was in preschool with the district two days a week so he could get a speech therapy and OT and all that stuff. And the other three days we paid out of pocket and put him in a general ed preschool.

Hmm. So she was, the way the room was set up, she was kind of behind the director of special ed. And when the director of special ed just simply wrote the aide onto Sean’s IEP, without even any discussion, she looked at me and went—

She mouthed WTF, and I just smiled at her because, you know, the director of special ed, she knew I would go for fair hearing. There was never a doubt that I would go for a fair hearing. Right. So she just was skipping that step.

Tim Villegas: Right, exactly. And it seems the way that you are describing what happened in the story, it just seemed like your attitude was, I’m not taking no for an answer.

Sandra McElwee: Yeah, so I kind of have about 40 years worth of sales experience, and my career has been never taking no for an answer, so—

Tim Villegas: Oh my goodness. So do you find that, I know that you’ve talked with a lot of families over the years, right? Because I’m sure people ask for your advice all the time.

Are there some tried and true strategies that you learned when advocating for Sean that still work today for families now that are going through this?

Sandra McElwee: Well, now there’s so much evidence.

Tim Villegas: Hmm.

Sandra McElwee: You know, using evidence-based studies showing what accommodations and modifications have been successful, showing the outcomes of the students who have been fully included.

When Sean was about 15, we started doing things with our local Down Syndrome Association and honestly, he was the only one in the group who’d been fully included. And he noticed a difference. And he said to me, my Down syndrome’s different than theirs. Mm. Interesting. And honestly, the only difference was social skills.

His social skills were really typical social skills. And theirs weren’t. They couldn’t— while they were verbal and could talk, they couldn’t do a take a back and forth conversation. It just wasn’t a skill because they were in classes with nonverbal students who didn’t even talk.

And anyway, so that was—it was noticeable by Sean even at that point. I went to the elementary school the year before Sean transitioned there. It’s our neighborhood elementary school. And I met with the principal and I’m like, Sean’s coming and he’s gonna be in general ed. And he’s like, we’ve never done this before.

And I said, well, we’ll all learn together. And this was from a study that the National Down Syndrome Society had done, that the teacher’s willingness to have the student in the class was the biggest success factor. And the second biggest success factor was the principal being on board.

Well, the principal was not on board, but I asked him— I actually made a video of Sean and interviewed his special ed preschool teacher that he had two days a week, and she talked about all the modifications he would need. She talked about his behaviors. There were no surprises. Mm-hmm. They weren’t gonna go in thinking, oh, this cute little boy with Down syndrome. And then as he runs out the door in elopes in the first five minutes of the class. So they had a clear picture of what was, and I made two VHS tapes.

Tim Villegas: VHS.

Sandra McElwee: No. And I took it to the principal with a little letter saying, you know, and there were six kindergarten teachers.

This was a huge school. And I said, can you please have each teacher pass it to the other one and have ’em watch the video. And then I would like whoever would have Sean next year volunteer for him to be in their class.

Speaker 3: Hmm.

Sandra McElwee: And so the next day I get a call from a teacher and she says, I’ve just watched the video.

I believe all students should be educated together. I would love to have Sean in my class next year. And I’m thinking, wow, that was fast. I just dropped these off yesterday. And then she goes, what should I do with a second video? So the principal knew who was up for the challenge.

Tim Villegas: Right? Yeah.

Sandra McElwee: And he gave both videos to the same teacher.

And I’m like, oh, well they were supposed to go to all the teachers, but hey, we just need one, so you’ll do. So that became an annual tradition. Every spring I said, who’s gonna be Sean’s teacher next year? Ask for one to volunteer. And the nice thing was now we had the previous year’s teacher that could talk to next year’s teacher and give them a full picture of what was happening.

Having the support of a one-to-one classroom assistant. Well, she was one, she was there because of Sean, but we had to call her a classroom assistant. That made all the difference because the teacher didn’t have to be pulled away from the other students when Sean pulled out his tricks, and his tricks were constantly changing.

Tim Villegas: Yeah. Yeah. Oh, I had a question before. Well, no, there’s a— so there’s a couple things running through my brain. And I guess I’ll go with the one that I can remember and I think it’s, I wanna talk about the aide because I think there is a misconception that— oh, I know what the other one was.

There’s a misconception that, well, if we’re gonna do inclusion, then everyone needs to have an aide, right? And so I’d love for you to address that. That’s number one. Number two, and I’ll ask it again if we get too far into our discussion, but where I’m going with this is some people may listen to your story and go, well, that’s great for Sean.

Sean had a lot of social skills. It sounded like he had a lot of natural ability, it’s not right for everybody. And so why don’t we start with the aide question and then we’ll go into, is full inclusion right for everybody?

Sandra McElwee: So if Sean’s teacher had had any experience with a student with disabilities.

Now, you know what? Honestly, Sean had to have an aide. Not everybody has to have an aide, right? Sean wouldn’t stay in his desk. He was getting in other people’s desks and trying to see what was in their desk. What if their crayons were different than his? And he was an eloper. We didn’t get behaviorists back then.

That was only for kids with autism. And so I would meet with a psychologist on a kind of regular basis and go, what do we do? He is running away. And she goes, don’t chase him. And I’m like, well, he’s running in the street. He’s gonna die. Gotta do something.

Yeah. So, but the school was locked down so he could run out of the class and he would not be off the campus.

And so they had to just not chase him, and it turned out, the first two weeks of every school year, even in sixth grade, he would run out the class to test and see what would happen.

Speaker 3: Mm.

Sandra McElwee: And when, by then he had the same aides, and when nobody chased him, he’d come back in and he’d stop doing it.

And ’cause it wasn’t effective. It’s a game. It takes two people to play the game, and it’s a huge adrenaline rush to be chased, so why not? So he had to have an aide because the teacher couldn’t watch— the aide did watch out the window and saw him in runner’s pose ready to take off, but he just stayed there and watched the door.

And if the door had cracked a little bit, he would’ve taken off, but it didn’t. So in his case, he had to have one. Not everybody. And sometimes people don’t need it after a certain period of time either. But he definitely did. So it’s all individualized and parents are gonna know what their student needs.

Tim Villegas: Sure.

Sandra McElwee: More than the school. Yeah. And I actually say always start with an aide, because you don’t wanna have to bring one in later. You can always take ’em away if it’s not needed, but it’s harder to bring them in later if things are going south.

Tim Villegas: Mm-hmm. Mm-hmm. And—

Sandra McElwee: Then your question about, oh, that’s good for your child. It won’t work for mine.

Tim Villegas: Yeah. Yeah. I’m wondering, if you hear that.

Sandra McElwee: No, everyone can be fully included. Everyone. I’ve seen students with ventilators, non-verbal, in the room. It benefits the typical students. Probably more than it benefits this person with a disability in many cases like that.

The students in the typical students in the classroom are the future doctors. They’re the future teachers, the ones who are gonna hire a person with a disability. If they have not been exposed to anyone with a disability in their whole life, why would they ever hire someone?

Why would they ever want to treat them in their practice as a doctor? It just changes the whole outlook of the typical students to have someone with a disability in their class. The school psychologist after the IEP in kindergarten was signed, said to me, do you really think Sean’s gonna learn more in a regular class than he would in special ed?

And I said, absolutely. He’s gonna be exposed to more than he would be in special ed. And then she said, well, what about, he doesn’t ever wanna come off— come in off the playground. And I go, well, that’s why he’s got an aide. She can deal with him while the teacher takes the other kids back in.

She goes, well, what about the other students? How are they gonna react? And I said, well, they’re gonna see him as a classmate. So by first grade, the kids, I would take Sean to the classroom and the kids were jumping up and down asking the teacher, can I be Sean’s reading buddy today?

Can I be Sean’s math buddy today? And these kids, when they finished their work, they got to go over and help Sean. And that really gave them a sense of accomplishment. Those kids ended up testing as gifted and talented. They were not gifted and talented, they failed out of that. But when they did the testing in third grade, they were so far ahead of their peers because when you teach, you learn.

And their skills were completely cemented by teaching. So fast forward eight years later, Sean was already in junior high or high school at the point. The school is where we vote and I go in to vote and the school psychologist sees me coming out of the multipurpose room and she says, come in my office.

I have a story to tell you. So at this point, the school was an inclusive school. They had around 40 students with a variety of disabilities, fully included, behavior training for the aides, modified curriculum being done by the resource teacher for every student. But the district had moved the special ed preschool classes to this campus.

Speaker 3: Mm-hmm.

Sandra McElwee: And so they had a student— and they had the older students come in and be aides in those special ed classes, which was very cool. They had a little girl with Down syndrome who was transitioning to kindergarten, and she said in the IEP, her mother’s pounding the table.

I wanna see every special ed class in the district so I can determine the best one for my daughter. And the principal and the school psychologist said, okay, we’ll make sure you can tour the other classes, but this is her neighborhood school and she can go to school here. She doesn’t have to go somewhere else.

And her mom said, well, is she gonna learn as much in a regular class? And the school psychologist said, actually, she’ll learn more because she’ll be exposed to more. And she goes, well, she never wants to come off the playground. What’s gonna happen? She goes, oh, well we have behavior trained aides and they will take care of that.

And then she said, what about the other kids? And she goes, well, actually our students with Down syndrome are our most popular students on the campus.

Tim Villegas: Yeah. Rock—

Sandra McElwee: Stars. Totally. You know, made my life because true change had really happened.

Tim Villegas: Yeah.

Sandra McElwee: You wanna hear the shitter? I mean, excuse me. The worst part.

Tim Villegas: I mean, it’s fine. It’s not— I don’t even think that’s really considered a bleep word anymore, so go ahead.

Sandra McElwee: Principal retired.

Tim Villegas: Uh-huh.

Sandra McElwee: New principal came in, went to every IEP meeting that year and said, you know, there’s classes for kids like yours. Ah, and undid everything that was done.

Tim Villegas: Yeah. Mm-hmm. Yeah.

Sandra McElwee: It completely killed me.

After the break, what does belonging actually look like beyond the IEP? Sandra shares what happened when Sean’s classmates started advocating for him and how one TV opportunity reshaped the message her family wanted to send to new parents. This episode is sponsored by Adaptiverse. If you’re a special education teacher, you already know the time problem.

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Tim Villegas: Yeah. Yeah. Gosh, is there— you’ve been doing this for a long time, so I’m wondering if there’s— if there’s an argument against inclusion like that is— maybe— no, I’m not gonna say this right. I’m not gonna say this right. Hold on. Let me rephrase the question.

Is it very possible that you’ve heard every single argument that someone would make against inclusion?

Sandra McElwee: Probably.

Tim Villegas: Yeah. Yeah. It comes to, you get to a point where you’ve just heard every single argument, right? Yeah. And so it sounds to me like— well, let me ask you this, what do you think is the biggest factor in someone changing their mind about inclusion?

Okay, you had a principal that was fully on board. Right? Now you have a new person, person doesn’t have the same mindset, doesn’t have the same lens, and is like, okay, well your child needs to go into the special ed segregated classroom. So how do you get someone that doesn’t have the mindset and that lens to change their mind?

Sandra McElwee: So back in the day, I was a medical sales representative and I made a lot of money and we had at Cal State San Marcos— oh no. Jackie Thousand and—

Tim Villegas: Yeah.

Sandra McElwee: What’s her husband’s name?

Tim Villegas: Uh—

Sandra McElwee: Is it Tim? Is it Tim?

Tim Villegas: Team? No, hold on. It’s Richard.

Sandra McElwee: Richard.

Tim Villegas: Richard.

Sandra McElwee: Villa. Richard Villa.

Tim Villegas: Yeah.

Sandra McElwee: They had an inclusion institute every summer.

Tim Villegas: Okay.

Sandra McElwee: And I took— I paid the way and they gave me parent rates, to take the principal, the school psychologist, and the next year’s teacher.

Tim Villegas: Okay.

Sandra McElwee: To the Inclusion Institute.

Tim Villegas: Oh, yes.

Sandra McElwee: That changed their minds.

Tim Villegas: Yes.

Sandra McElwee: That did it. It wasn’t coming from me. It was coming from the experts and people with disabilities doing presentations like Norman Kunc and—

Speaker 3: Mm-hmm.

Sandra McElwee: That really did it. Educating them, the school district wasn’t educating them. Through the community advisory committee, we had inclusion seminars and stuff, but the teachers didn’t come. They weren’t required to. And so educating them— the students coming out of college right now, the new teachers, they’re trained in inclusion, but what happens is they get there and the standard guard is in place going, oh, we don’t do that here.

Yeah. And they basically lose the skills ’cause they don’t use ’em.

Tim Villegas: Yeah.

Sandra McElwee: You know? Yeah. They learn how to modify curriculum, but they’re not allowed to do it because the 20 year tenured teacher, 30 year tenured teacher’s like, well, I’m not doing it, so you better not do it.

Tim Villegas: Yeah. It’s really strange.

That was my experience too. And I don’t think you know this about me, but I’m former special educator. 16 years in public schools. So I taught in California, actually, I’m originally from California, actually, from Pasadena. And then I moved to Georgia in 2008, and then worked in Georgia, and then became like a support specialist. So I would go to IEPs, do behavior plans, stuff like that. And where was I going with this? I was losing my train of thought. It’s Friday afternoon and I’m just like, maybe I need more coffee. What was I talking about?

I was saying—

Sandra McElwee: You’re too young to be doing that.

Tim Villegas: I know. I know.

Sandra McElwee: So how you saw the standard guard?

Tim Villegas: Oh yes. Oh my gosh. Thank you. Yeah, thank you. Thank you. Thank you. Okay. So I went to school and got my teaching credential at a very inclusive teacher ed program, Cal State Fullerton.

And so when I got my first job in Pasadena, I was shocked at how little inclusion was happening, and this was early two thousands. But even like wherever I was, no matter what school I was in, it felt like I was bringing— like I was bringing this new innovative approach when you and I both know that this approach has been proven to work for decades.

Sandra McElwee: Oh, just so you know, Jan Weiner was the one, Jan, who came to our inclusion program and told us about—

Tim Villegas: Jan.

Sandra McElwee: Yes. Our pre— our— oh shoot. What was it? The early intervention program. Yeah. She was the one who came and presented.

Tim Villegas: Jan was my professor.

Sandra McElwee: Yes. Signed up. She was— if you were Cal State Fullerton.

Tim Villegas: Yes. I have a story about Jan. Can I tell you?

Sandra McElwee: Sure.

Tim Villegas: Okay. So Jan Weiner, and I don’t know where she is now. I actually emailed her, this was years ago, to kind of give her— to tell her this story, but Jan Weiner was one of the reasons why I changed my mind. And I remember going to her class, it was a positive behavior support class.

And she was talking about supporting learners with challenging behavior and that we needed to come up with an inclusion plan for one of our students. And she said, I want you to pick a student that you would never think would ever be included. That’s who I want you to pick.

And I remember coming up to her like, wait, okay, so I don’t think you understand, Jan, I don’t think you understand the students that I have in my class that are so aggressive and they are non-verbal and they require so much support and how could they thrive in a general education class?

I just don’t think that you understand. Okay, this is me.

Sandra McElwee: You know, I may have come to one of your classes and spoken, by the way, because I—

Tim Villegas: It’s very possible. Yeah.

Sandra McElwee: But go ahead.

Tim Villegas: So Jan says, okay, we’ll do the assignment. I was like, okay. And so then I had a student, what do I normally call him?

Let’s call him Paul. And Paul, he is a non-speaking student, loves to tear paper and was got pretty aggressive at times. And we included him in a fifth grade social studies class, and Paul loved to cut, that was his thing. He loved to tear paper and cut things. And so I collaborated with the general ed teacher and

He cut topography maps for the class because they were learning about 3D maps and stuff like that. And he was included for that portion of the lesson, a hundred percent zero behavior issues. Zero problems. And he enjoyed himself. He got to know some of the other students and I was like,

oh, all you have to do is plan for it. Like you just have to plan for the student,

Sandra McElwee: what a concept.

Tim Villegas: be successful. Yeah. And so then I don’t really remember the rest of the class, but that was the thing that really turned me around because I was dead set on saying this will never work for my students ever.

Like, don’t you understand? Dr. Weiner, like, and that put me on a trajectory of, I guess, where I am now because I had constantly advocated for full and authentic inclusion for my learners students all throughout me teaching. And now I’m very fortunate to work for an organization that that is what we do.

We equip school districts to include everyone. So that’s my story about Jan. I’ve told that story many times, but I thought that you would appreciate that.

Sandra McElwee: I love it. Totally love it. Yeah. Her and her husband have an employment program that their motto is Everyone Works. Mm-hmm. And they take the people who everybody says they’ll never get a job and get them jobs.

I love it. So it moves on to adulthood too.

Tim Villegas: That’s right. That’s right. Yeah. Yeah. And let’s just say it again. Our kind of tagline at the end of every episode is inclusion always works. And I firmly believe that it does. It absolutely does. Always. A hundred percent.

It never fails. And if it does fail, it’s because we didn’t implement it. Right. Yeah. We didn’t do it right. You know,

Sandra McElwee: I totally blew it. Between second and third grade. I put Sean, I’m sorry, between first and second grade I put Sean in the segregated special day class for summer school.

Speaker 3: Hmm.

Sandra McElwee: And I saw the students, I don’t know what their disabilities were, but they weren’t— in my opinion was nothing that needed to be in a special class. And so I was like, oh, he’ll be fine. Well, I didn’t realize they were gonna bring in other students from other schools to the class.

Speaker 3: Mm-hmm.

Sandra McElwee: And by the end of the four weeks of four hours a day that he was in that class, he was stimming. Because he was imitating one of the students with autism in the class, and it took me three months to get him to stop.

Tim Villegas: Yeah, there’s so many— there’s so many downsides to, yeah, a segregated classroom, and that’s just one of them, you know?

Yeah. Not only are there multiple grade levels in one class, typically, and the teacher has to somehow teach three to four to five grade levels standards, right? And you have learners with so many different and varied needs all in one place, that you’re not able— even, the promise of segregated education is that you’re gonna get a smaller teacher to student ratio, but it completely gets thrown out the window when you have so many different needs.

And you know, if you have one person that elopes out of the classroom, you might as well have 10. Right? And so how is that gonna work? Yeah. So anyways, yeah.

Sandra McElwee: Absolutely. Very good points.

Tim Villegas: Yeah. I’m wondering about— let’s go with advocating for belonging, because I think a lot of people listening know that inclusion benefits not only the educators, but the learners with disabilities and learners without disabilities. So it benefits everyone as far as like being a better teacher and a better learner.

But

what about all those, the intangible things, you know, about friendships, belonging, extracurricular activities, community, being a part of a larger community. Can you touch on some of those intangible things?

Sandra McElwee: Oh my gosh. Those things were the icing. We had an after-school choir program.

Now it’s pretty well known people with Down syndrome, tone deaf and can’t carry a tune. But every kid wanted to be in that choir program and so Sean was in it. And they would have a performance twice a year. He would sit down halfway through because he didn’t have enough stamina to stand the whole time.

So they made sure he was in front. So when he sat down, you could still see him. Fabulous accommodations. And the students were his classmates that were there. He was included when they did the— what was it, fourth grade, the one mile run or whatever it’s supposed to be. Took him 18 minutes.

Because he couldn’t run it. Yeah. He was walking it, but everybody was done. And then when he comes around the final lap, they got up and ran with him so he wouldn’t be running alone. And I don’t know where I saw it, but at some point I read that you have to have a sense of belonging before you can even learn.

And that makes sense. Mm-hmm. Because if you’re being bullied or if you feel like an outcast, you’re more worried about that than you are opening the textbook and seeing what’s next. And that’s true for typical students too. In high school, Sean ran for election. He didn’t win, but he came close enough that it scared the ASB teacher.

So she changed the rules the next year, to say— because he ran as a sophomore, so when he was gonna be a junior, he was gonna run again. She changed the rules the next year to say, you must be allowed to read aloud from a 10th grade text that you’ve never seen before. And

what.

Tim Villegas: Oh no. Wow.

Sandra McElwee: And oh, and articulately was—

Tim Villegas: Oh, oh, wow.

Sandra McElwee: Yeah. So

Tim Villegas: no ableism there.

Sandra McElwee: So that earned the whole district a civil rights complaint from me.

Tim Villegas: Yeah.

Sandra McElwee: And I named all of the students who were English language learners. I named all of the students who were in Resource English. Hang on one second. Sean. Sean. He’s playing with the dog, so I’ll be right back.

Tim Villegas: Yeah, no problem.

Sandra McElwee: Sean.

Can’t make noise. Can’t make noise. Get a ball.

Okay. Sorry.

Tim Villegas: Yeah, no problem.

Sandra McElwee: Decided throwing a bone was better than a ball. So the remedy was that all of the ASB students— and I just named his school, but they did it for the whole district— had to go through a training on disability history and disability rights, including the ASB directors.

So even when we didn’t have the initial win, we made sure it was gonna benefit people in the long run. Yeah. So he was assistant for the high school varsity baseball team. Well, he did it one spring, and then the next spring they all get together, like right after Christmas, the baseball team and the coach says, okay, we’re gonna do this this year and we’re not gonna have a team assistant this year.

Sean’s not gonna be the assistant. Well, these boys wrote letters, had their parents call the school and had a fit and said, we’re not playing baseball if Sean’s not our assistant.

Tim Villegas: Wow.

Sandra McElwee: His fellow students were advocates.

Tim Villegas: Yeah.

Sandra McElwee: Drama class. He was supposed to be in drama class first semester.

He wanted to be on TV so bad it was wasn’t even funny. So he was supposed to be in drama class the first semester of high school as a freshman, but he wasn’t. I didn’t know it was a one year class. Things like that. You gotta talk to your typical friends’ kids and find out how things work.

And so I said, okay, second semester he needs to be in drama. Well, that’s when I found out it was a year class. So then I had to write an IEP goal, and I wrote a lot of his IEP goals, that Sean would read a monologue aloud in a drama class, and there’s no special ed drama class. There’s only one.

No. And so he had to be— the teacher was forced to have Sean in his class the next year. So comes along to the play. Now, Sean’s been on stage since he was three, in some capacity in plays and musical dancing groups and our church children’s choir in the elementary school, on and on. He also played violin.

He only learned one song, but it was okay. And then he wanted to play trumpet. That’s another story. So we’re at the drama class in high school. Everyone is cast in the play and Sean’s job will be to pass out programs as people enter.

Speaker 3: Mm-hmm.

Sandra McElwee: So there’s a hundred kids in this class and they all had different scenes.

So they’re rehearsing their scenes and they all think Sean’s in another scene. He’s just not in their scene. And they get to the dress rehearsal. And they’re like, where’s Sean?

Speaker 3: Mm-hmm.

Sandra McElwee: And the teacher’s like, oh, he’s not in the play. Well, they sat down in the audience part of the auditorium and said, we’re not rehearsing.

If Sean’s not in the play, we’re not gonna have a play if Sean’s not in the play. Nobody told these kids to do that.

Tim Villegas: Right.

Sandra McElwee: And so that truly was a sense of belonging. And I would get calls from his classmates. Mm-hmm. Telling me things that he did and things that the teachers did.

And so I had a lot of eyes on that campus.

Tim Villegas: Yeah. And these are the kids that he’s basically grown up with, right?

Sandra McElwee: Yeah. And new ones.

Tim Villegas: Yeah.

Sandra McElwee: In high school, new ones that didn’t know him before, but they were friends with the kids he grew up with and modeled— basically, the other kids thought Sean was cool, so they thought Sean was cool, right.

He got to go in the limo to dances, all the things that the typical kids got to do. He really was truly included.

Tim Villegas: Yeah. Yeah. And

and then he ended up being on TV after all. Right?

Sandra McElwee: Yeah. Yeah. His articulation was still bad at 18 years old. He’d had braces. He has

phonological processing disorder. He has apraxia, oral motor and verbal apraxia. He’s deaf in one ear and his articulation was horrible. I would take him to auditions and they couldn’t understand what he was saying. And so I just had to say, look, Sean, you’re gonna have to work on your speech.

And we didn’t have speech therapy anymore. And speech therapy wasn’t meaningful to him, to sit there and have him repeat sounds and words, it just wasn’t meaningful. Right? Well, no, it was meaningful. Mm-hmm. Because he had a goal and it was his goal. And so I said, well, when I talk to you, when you talk, can I correct you?

And he was like, sure. And I go, okay. I said, well, you can’t go mom every time I correct you, because then I won’t do it.

Speaker 3: Right?

Sandra McElwee: And so he would say a sentence— and he was really bad about running his words together and talking too fast. And he’d say a sentence and he’d go, could you understand that?

Was that clear? And I don’t know if you know this, with apraxia, you have to hear a word like a hundred times. Mm-hmm. Before you can say it. And so I would break the word down and, you know, I don’t know, let’s just say acceleration, Excel or a— so we’d say Excel. And I’d have to say Excel like 50 times.

Then he’d go Excel. Finally get Excel. Okay. Mm-hmm. Mm-hmm. And then we had to do that for the words. Did you ever watch Born This Way? I don’t know if you saw it.

Tim Villegas: I— no, I did not. I did not. Listen, there is so— I’m so behind on everything, but yes.

Sandra McElwee: I’m just kidding you.

Well, you can catch season one and two on Amazon Prime. Okay. Or if you have cable TV, you can catch all four seasons on A&E’s website. So Sean mispronounced words in the show. He got his HUD voucher during the show and he told me he got his head bash.

He was going to Las Vegas, and I said, what are you gonna do there? And he says, I’m gonna play cramps. So sometimes his mispronunciations are hysterical, no doubt. But—

Tim Villegas: Oh my goodness. Oh, yeah, I’m sure that was just a— gosh, what an experience, right, to be a part of that.

Sandra McElwee: Yes. When we— he auditioned and we didn’t know what he was auditioning for. We just knew there was casting people looking for people with Down syndrome.

Tim Villegas: Wow. Okay.

Sandra McElwee: And it wasn’t until he was actually cast for the show that we found out it was a reality show by the same producers who produced the Kardashians.

Tim Villegas: Right? Yeah.

Sandra McElwee: Yeah. And a lot of the parents were like, oh hell no.

Tim Villegas: Right.

Sandra McElwee: And so I sat down with a producer and I said, I’ve been an advocate for unborn babies for— at that point 20 something years. And I said, I’ve written articles, I’ve had websites, I’ve had all kinds of information out there, but there is nothing more powerful than TV.

And if you’re gonna show their authentic lives and show people the possibilities, then we’re in. And I voice— you’ll see a lot of scenes where there’s a voiceover. It’s me.

Speaker 3: Mm-hmm.

Sandra McElwee: Talking. Even the very first episode, I’m at the end of the show saying, your baby will walk, your baby will talk and live a meaningful life.

In the community. And that’s my message to parents with prenatal diagnosis and or a newborn that was diagnosed upon birth. I cannot tell you how many parents watched the show when they got their prenatal diagnosis and went, okay, I can do this. Hmm. We heard from so many new parents. And even now when I go to the National Down Syndrome Congress Convention with Sean, they still come up to me.

Their kids are like, you know, 10 now, and they’re like, yeah, you’re the reason our baby’s born. Yeah. Not me personally, the show.

Tim Villegas: Right. So thank you for sharing all that. So Sean’s with you, Sean. I say hi, like I don’t wanna force it or anything.

Sandra McElwee: Sean, you wanna come say hi? He just got here from work. He works at a golf course and he picks up his dog, but his job coach is off today. So come on in, come say hi to Tim.

Tim Villegas: Hi Sean.

Sean McElwee: Hey Tim.

Tim Villegas: Hey, you know, I like to golf.

Sean McElwee: That’s cool.

Tim Villegas: Can I golf at your course?

Sean McElwee: You can.

Tim Villegas: Okay. If I’m ever in California, I’ll stop by and hit around.

Sean McElwee: Alright, cool. Bye bye. June, my birthday is coming up.

Sandra McElwee: His birthday’s Monday.

Tim Villegas: Oh it is. Oh, happy birthday in advance then. Wow. Excellent. Excellent. Very nice to meet you.

Sean McElwee: You too, man.

Tim Villegas: Yeah. Awesome. Well, cool. We’re recording a podcast, so if you want to— if you wanna say hi to our listeners,

Sean McElwee: you’re good.

I can say hi everybody. Enjoy mom.

Tim Villegas: Nice. Awesome. Awesome. Okay. Well, why don’t we

why don’t we wrap up and if you could, we could kind of bookend our conversation with— if there are families who are just on this road, starting this road of advocacy, what are like three pieces of advice that you would give them?

Sandra McElwee: So first I would have them network with parents ahead of them in the same school district that are doing inclusion, and if they go to community advisory committee meetings, you’ll find them there. Your local groups, if you have autism or Down syndrome, whoever your local support groups are, you can find them through that.

So if you can find someone in the same school your child will be going to, that’s huge because they can tell you what to expect and things that helped them along the way and maybe even follow in their path with the same teachers they had and things like that. Then my other one is learn the law and kind of know in advance what objections are gonna be given during the meetings.

And be prepared to answer those objections with legally backed answers. And make sure they know you have no problem going to fair hearing. But if you just let ’em know you have no problem going to fair hearing, you’ll never have to go. And honestly, I’m gonna give a little statistic.

Schools and insurance companies and lots of things say no first.

Speaker 3: Mm-hmm.

Sandra McElwee: Because about 90% of the people go, oh, okay. And they don’t push forward. They don’t look for the loopholes. They don’t file for fair hearings. They just accept the answer. Don’t accept the answer.

Because the law is on your side and they don’t have a choice. They have to follow the law. And if they know you’re not gonna just accept their answer, then you can get a lot further than you think. And then my biggest thing is give back. Don’t just be the parent who takes and takes. Volunteer for committees.

Be the volunteer at activities where they need a parent volunteer. The relationships that I built with PTA and the community advisory committee were huge. PTA was really big. I got to know all the parents on the PTA, going to the meetings and volunteering for different things that happened throughout the year.

And I worked full time, so this wasn’t like I was just sitting around the house. It was a challenge to fit it in, but I fitted in and my other PTA moms were eyes on campus ’cause they were there during the day doing things. And they would call me and tell me when they saw the aide sitting with Sean at the lunch table when all the class had gone back to the room already.

Because he had played the whole lunchtime and the aide thought it was okay ’cause he needed to eat. And I’m like, you know what? Give him a couple of days without eating, and then he’ll take the time to eat instead of playing the whole time. But I would’ve never known that was happening if somebody hadn’t told me.

And then I have a fourth one. Sorry.

Tim Villegas: That’s okay. Bonus, a bonus one. Yeah, go ahead.

Sandra McElwee: Always take bagels to a morning IEP meeting. And don’t forget the cream cheese and or donuts to a morning IEP meeting, or in the afternoon for an IEP meeting, take some freshly baked cookies that are still warm.

Now there— we had a special ed director at one point. He wrote a book that said, don’t eat the cookies. So—

Tim Villegas: they were talking about you.

Sandra McElwee: They were. Eat the— but take the cookies because that really warms people up. And always be friendly. You don’t walk in angry. Just build relationships. That’s really the biggest thing. Once you build relationships, you can get a long way, a really long way.

Tim Villegas: Thank you for all that advice, and I really appreciate your time and your wisdom in sharing all of this for our audience. Sandra, if people wanna know more, where would you point them to?

Sandra McElwee: So Sean, after Born This Way was canceled, I thought Sean was gonna be devastated. He didn’t skip a beat and he said, I’ll just start my own YouTube channel.

So Sean has a YouTube channel and we have videos of what’s going on in his life on that YouTube channel, and you might see me in some of those videos here and there. So that’s kind of like a continuation of Born This Way with the Sean Show is what it’s called.

Tim Villegas: Oh, nice. Okay. We’ll make sure to have those links in the show notes.

Sandra McElwee: Perfect.

Tim Villegas: We’ve talked about what belonging really looks like from the baseball field to the drama stage, and how Sean’s story reached families around the world through Born This Way.

There’s one more thing I want to get to before we wrap up, and let’s just say Sandra doesn’t hold back on what’s on her mind these days. Okay. I like to end every interview with a segment I call the mystery question. And the mystery question is just a random question that we both get the answer together. I don’t know what it is until I use my little generator here.

You a—

Sandra McElwee: magic eight ball.

Tim Villegas: Yeah, basically. Basically. All right, so here we go. The question for this afternoon is— this is— what could you do without right now? Which is an interesting question, but we’re gonna go with it. What could you do without right now? And we can both answer it.

Speaker 3: Donald

Tim Villegas: Trump.

I love that you went there, because that’s actually not— although I have very similar feelings, I don’t think that that was my first thought. So, but I appreciate your honesty. What could you— yeah. Okay.

Sandra McElwee: Actually, let me change that because he does have people who like him, maybe. Okay. I could do without Robert Kennedy.

Oh, and his lack of knowledge that— when— but he spouts it like it’s authoritative. Okay. I could do— let me start over for you. I can do without Robert Kennedy and his belief that what he says is true.

Tim Villegas: Gotcha. Okay. Okay. Thank you for your candor. I appreciate that.

I appreciate that. Well, you know, we are recording in the beginning of October. I don’t know when this will air, but right now we’re in a government shutdown. I could do without that, ’cause we have— because friends, neighbors who are affected by that. And it is tough times ahead for everyone, but especially people who have lost their job.

So not a great time. So we’ll both go kind of on the political side, but that’s okay. Because we have our beliefs and we have our free speech. So we can say what we want, right. For now.

Sandra McElwee: Absolutely. And until you get canceled, like Jimmy Kimmel.

Tim Villegas: That’s right. That’s right. All right. Sandra McElwee, thank you so much for being on the Think Inclusive Podcast.

We appreciate it.

Sandra McElwee: Thank you. Thank you for having me.

That was Sandra McElwee. Here’s what I’m taking with me. Belonging has to come first. Sandra put it plainly. You can’t really learn if you don’t feel like you belong. And the stories she told from Sean’s life weren’t about perfect systems. They were about the baseball team that refused to play without him.

The drama class that wouldn’t rehearse without him. The classmates who ran the last lap with him so he wouldn’t finish alone. That kind of belonging doesn’t happen by accident. It happens because adults set the conditions and then trust kids to build the rest. Sandra also reminded us that no is usually the first answer. Then learning the law, building relationships and showing up prepared is how that no eventually becomes

yes. One practical step for educators. Notice where no shows up in your building. The scheduling objection or the, we’ve never done it this way before, or they need to earn their way into general education. Then ask what evidence, relationship, or creative workaround could turn that no into a yes.

Sandra reminded us that no is almost always the starting point, not the ending one. Share this episode with the colleague who’s building Inclusive Schools. Rate and review us on Apple Podcasts or Spotify and follow Think Inclusive wherever you get your podcasts. If you have thoughts about this episode, you can always email me at tvillegas@mcie.org.

Now, let’s roll the credits. Think Inclusive is brought to you by me, Tim Villegas. This show is a proud production of the Maryland Coalition for Inclusive Education, writing help from Claude, scheduling and extra production help from Jill Wagoner. Our original music is by Miles Kredich, with extra vibes from Melod.ie.

Big thanks to our sponsors, IXL and Adaptiverse. Visit ixl.com/inclusive and adaptiverseapp.com.

If you’ve made it this far, you’re officially part of the Think Inclusive Inclusion Crew. Want to help us keep moving the needle forward for inclusion? Head to mcie.org and click the donate button. Give $5, $10, $20. It helps us keep partnering with schools and districts to move inclusive practices forward and support educators doing the work.

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