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Ep 9: Reflections, Insights, and Fond Memories from Working with Neurodiverse Students

Kristen recently retired from her work at The Joshua School, a non-profit, facility school, approved by the Colorado Department of Education that partners closely with local school districts to provide the intensive services many of the students need. It was such a meaningful experience in her life and it’s something we really need to talk about.


Kristen recently retired from her work at The Joshua School, a non-profit, facility school, approved by the Colorado Department of Education that partners closely with local school districts to provide the intensive services many of the students need. It was such a meaningful experience in her life and it’s something we really need to talk about.


Join us as we explore some of Kristen’s favorite memories from her time at the school, especially how joyful the students are in a safe learning environment.



In this episode, you’ll learn...

  • [05:32] Kristen explains what the Joshua School is

  • [11:26] Kristen talks about the roles she held there, and the wonderful staff she worked with

  • [14:32] Kristen reminisces about the students at the school and shares a few stories that have stuck with her

  • [23:40] How joy is the result of feeling safe and feeling like you belong




If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.


Links mentioned in this episode…




Transcript for "Ep 9: Reflections, Insights, and Fond Memories from Working with Neurodiverse Students:"


Gwen:

If you have an appreciation for honest and often irreverent conversations about parenting humans with neurodiversity, you have found your home. I'm Gwen.

Kristen:

And I'm Kristen. And together, we have 35 years experience parenting some fiercely amazing humans, which gives us an endless supply of stories of inspiring failures and heartbreaking wins.

Gwen:

Welcome to You You Don't Want a Hug, Right? We've been having these conversations for years, cracking ourselves up. We've always wanted to share the hilarity and the hard with other parents. So here we are.

Kristen:

Grab a cozy blanket and a beverage, and go hide in a closet nearest you.

Gwen:

Well, hi.

Kristen:

Hi, Gwen.

Gwen:

How are you my friend?

Kristen:

Doing pretty well. Trying to find a new normal now that I am not working outside of writing and podcasting, and just trying to find my way.

Gwen:

Yeah, you sure are. I really enjoy the vulnerability of this journey for you, although most days, you feel like banging your head against a brick wall.

Kristen:

I really do. It's a little scary. Vulnerable is not a fun place for me.

Gwen:

I know. But you're finding it. Girl, you're finding it, and I'm proud of you. You're just showing up like a real bad A.

Kristen:

Thank you.

Gwen:

You're welcome. Let's just start with our Grahamism and Rylanism. I have a shorter one, imagine that.

Kristen:

Okay. Hit me.

Gwen:

So Rylan on Sunday is leaving to spend his three weeks as a camp kitchen intern.

Kristen:

Oh my God.

Gwen:

And I think I've talked about this on a previous episode, but he was asked to come and work at Camp Roger, and I will give them props because I love them, so much about them. And he leaves on Sunday for his three weeks.

Kristen:

Wow.

Gwen:

He is going to be living in the staff housing, so we are getting him packed. He does get to come home on Saturday mornings until Sunday evenings.

Kristen:

Wow.

Gwen:

So we will have him home for that time. So anyway, he leaves on Sunday. We are sitting there last night, as we do, going through every hour of his schedule. So he is familiar and is taking notes. "Can I have rubber gloves in the kitchen? Otherwise, how will I touch the hot water?" Yes. All of these things. And one of his jobs is going to be to clear tables and wash dishes.

Kristen:

Oh Lord help us all.

Gwen:

I mean, he doesn't do that ever. If we tell him to clear the table, he picks up a fork, walks it to the sink, and then stands there and looks at us as if he does not know what to do next.

Kristen:

Yeah. The washing of the dishes is going to be a tough one. For people's health and safety, they may have to do something different.

Gwen:

Let's listen to what he said. We said, "So buddy, what do you think about this particular part of your job?" And he goes, "Well, what do you mean? It's going to be my job that I'm being paid to do. Of course I'm going to scrub those dishes." We just looked at him like, "What? Okay." And I said, "Well how are you going to do it?" He goes, "Easy, with the scrub brush and soap."

Kristen:

Okay.

Gwen:

And then Tim said, "Well, do you think you'll be able to transfer that knowledge when you get home?" He goes, "Doubt it. It's not my job here."

Kristen:

So true. It is so true though.

Gwen:

It's so true. But it's also, if he really is going to be capable of it, we're going to have some issues I think.

Kristen:

Oh yeah.

Gwen:

Right?

Kristen:

Absolutely.

Gwen:

Okay. That was my Rylanism.

Kristen:

Okay. My Grahamism is short, but sweet as you'll see. I told him recently, "Graham, you're such a sweetheart, you know that?" And he said, "Tell me something I don't know mom." Because I do think being sweet and kind is really one of his biggest superpowers.

Gwen:

Oh for sure.

Kristen:

"Tell me something I don't know."

Gwen:

How good that he knows that.

Kristen:

I know.

Gwen:

Because you tell him.

Kristen:

I do tell him.

Gwen:

Good job, mom.

Kristen:

Thanks.

Gwen:

All right. The episode we have for you today is a special one. Kristen may or may not cry 100 times. So she recently retired from her work at The Joshua School, which she will tell you more about. And I've given her a couple of weeks to really just sit in the discomfort of not being in there anymore and the grief of that, but also hoping that she will find space to just really appreciate what she learned there, what she added to that environment, and what she's able to offer all of you as listeners, as a result of working with a population of students who are significantly impacted by their neurodiversity often. Are you crying already?

Kristen:

No, I'm good.

Gwen:

Okay. Okay.

Kristen:

I'm good. I'm just thinking hard.

Gwen:

I couldn't tell there for a minute. We can see each other, friends, and I was very fearful there for a minute that this was going to be harder than I even thought.

Okay. So we wanted her to use her experiences while they're fresh to talk about the gift that is this population of humans significantly impacted by their neurodiversity and autism. So why don't you just start by explaining to us what The Joshua School is and what some of the roles you played there?

Kristen:

So The Joshua School is just basically a magical place, but it is also a Colorado Department of Education approved facility school. It's not a private school. So school districts place and fund students to come to our school when they are not able to support them in the way that they need to be successful in a school environment.

So we have a pretty diverse population of students in terms of their background, ethnicity, income bracket, family dynamics, everything you can think of. Because we are not a private school, we're able to have the privilege of having all kinds of students with us.

Gwen:

That's really beautiful. What percentage of students would you say come privately funded by their families?

Kristen:

Maybe 2%.

Gwen:

Okay. So it is a majority of students that schools have said, "We aren't able to support them in the ways they need"?

Kristen:

Yep.

Gwen:

Okay.

Kristen:

That's right. And because it's a very expensive placement, we have a model that... I'm just going to say we and us because still, that's where I'm at. Okay?

Gwen:

That's fine.

Kristen:

Okay. So it's a model that is intensive in its support levels. So it's a one-to-one instructional assistant for every student, plus a lead teacher, plus a behavior specialist, OT and speech, and psych. So there are a lot of adults in the building able to really work closely with our students so that they can receive the amount of support they need to be successful and make progress.

Gwen:

Which is unheard of?

Kristen:

Yes. In other settings, it is unheard of. And I'll tell you a little bit about some of our friends there, that have made progress that will just make your hair stand up. It's just really unbelievable. But I think what is the most amazing thing about the school is that it was started by six teachers who were working in a public school setting, who had a student they worked with pass away. And they were so impacted by that, that they decided they couldn't wait. They needed to build the place where if today was going to be your last day on earth, you would be loved and supported in the best way humanly possible. And so they quit their jobs, they used their retirement money, and they started the school.

And so they founded it on a certain set of philosophies. And this is why I think it's so hard to leave a place like that, because I've never been in a place and participated in a place that had philosophies like this, where dignity is the birthright of every human, find meaning in everything you do, every day is a new day.

Those types of things are not just talked about or live on a wall somewhere. We actually talk about how we're living those philosophies as we're working alongside our students every day.

I've never seen that before. And it really is a profound shift in how you think about working alongside students that are significantly impacted, and families that are significantly impacted by their child's disability.

Gwen:

Well, especially that. If those philosophies were in the culture of every school building, how magnificent would that be? But namely for students who are so often passed over or looked at as if they don't have any obvious value, is so often what those students are handed in a typical school environment.

Kristen:

Yeah. And I don't think it's because school teachers in public school settings don't love and appreciate our kids, because they do.

Gwen:

Sure.

Kristen:

But when you're in the culture of a building, or a district, or a state, or a country that financially doesn't value, from a training perspective doesn't value the lives of our kids who have significant intellectual disability or significant behavior.

So a lot of our kids, because they're non-vocal, are engaging... Or even if they are vocal, but they don't have the other skills, are engaging in high levels of intensive behavior that schools don't know how to address, and they don't have the environment to address it, because they're not funded to. So it isn't a lack of desire, it's just a lack of access.

So I think working in a place where we don't talk about our students in front of them as though they weren't there. I think a lot of times people assume if a student has an intellectual disability or if they're not vocal, that they can't really understand what you're saying. And that's just a huge mistake to make, in the way that if we were to be talking about a student's programming and we would let them know, "We're talking about how to help you with your letters," or, "We're talking about how to help you with your program today," or, "How you're going to play on the playground today," so that we can bring them into the conversation.

We look at them, we engage them, we talk to them. We don't just talk about them, in front of them. And that's a really different experience than you're going to find in other buildings.

Gwen:

All right. So tell us about the roles that you played while you were there.

Kristen:

Yeah. I was on the board of directors for a couple of years while I was teaching at CU School of Medicine in a disability program called LEND. And then I was so really blown away by The Joshua School, that I decided I had to work there.

And so for eight years, I was part of the senior leadership team. As many of you who have worked in nonprofits know, you have to wear a lot of hats, and you're always trying to make ends meet. So sometimes, I felt like the director of shit that needed to get done. So a lot of operational responsibilities and then some development responsibilities. And then ultimately, I was the executive program director. So working really closely with the program directors at each campus, and getting to work with the staff and make sure that staff management was being supported, and that our students were being supported. So I got a lot more student contact time and staff contact time, which was my favorite part of the job.

Gwen:

And you wouldn't have worked there without those things.

Kristen:

I probably wouldn't have stayed as long if I didn't have that piece.

Gwen:

Tell us about some of the qualities of the staff that you worked with, because you cry your eyes out just talking about them.

Kristen:

Yeah, they're exceptional people. I think because of the philosophies that The Joshua School has, it attracts a certain kind of person. We don't look for people who are necessarily highly skilled in ABA, which is applied behavioral analysis. Of course, that is a tool that we use at the school, but it's filtered through the philosophies. So it's a little bit of a different approach.

If we were to interview somebody that said that they thought of people with autism as a puzzle, that they're fascinating, that's not what we're doing. This is a calling and it's a heartfelt experience. And if you're not willing to be vulnerable, and meet our students where they are, and really understand their experience, and if you're just looking logically as a puzzle, that's not what we're doing.

And so I think we attract a really phenomenal group of human beings who love our kids so much. I've never seen a staff who had so much care, real care for our students, and also dignity.

So they really talk to our students in a way that feels like you would want to be talked to, and interact with them in a way that feels like they're interested and excited to hang out with our kids, not teach them and take care of them. They're really into who our kids are, because they're amazing. Our kids are amazing, and not everybody sees that.

Gwen:

And it's hard to see that if you don't spend time just quietly observing them first.

Kristen:

Right.

Gwen:

And learning what it is that they lean to and how they communicate. And speaking of communication, since a lot of students there are non-speaking, talk about some students who are non-speaking, but who spoke super loudly to you.

Kristen:

Yeah. Some of my friends there were not vocal. They used communication devices, and some of them were not yet... Their communication was kind of evolving, and they weren't yet to the point where they were using a device.

There's so much nonverbal communication. It's really interesting to have developed a relationship over years with some of our students who I know their moods, I know what they like, I know what they don't like. I know what makes them happy. They're able to share their feelings, and their joy, and their desires, and their frustrations with us in a way that makes you feel like you forget that they're not vocal.

Gwen:

Tell us about Blueberry.

Kristen:

One of our students who we'll just fondly refer to as Blueberry, is an eight-year-old boy who has very little verbal vocal language, but is one of the most social human beings I've ever met. This kid has an entourage following him everywhere he goes, because he's infectious. He just loves to interact with people, and he's mischievous, and he's funny, and he likes it when you're funny and mischievous. So it really brings that out in people.

He struggles to stay regulated, so has some really big behaviors that have made it impossible for him to access learning. And we're just struggling and working to help him regulate enough to reduce some of those behaviors so that he can be safe. And he's quite smart, and very loving, and just the best of humans.

Gwen:

He happened to call Kristen when we were in the car when she was here last week. And what did he say to you, KK?

Kristen:

"KK, tomorrow, next next?" He wanted to know, are you coming tomorrow? Are you going to be here the next day? Are you going to be here the next day? So he was telling me he missed me, and I just miss him too.

Gwen:

Breaking your heart.

Kristen:

Breaking my heart into tiny little pieces.

Gwen:

But also making you happy.

Kristen:

Yeah.

Gwen:

And he was with his teacher who was giving him an ice cream getaway, because he had completed successfully some of his tasks.

Kristen:

He had stayed safe for the whole morning, and so he was being rewarded with one of his favorite things, which is a trip in the car to go get something at a drive-through. And he usually gets to call his favorite people when he is in the car. He loves to FaceTime. He has pictures of us all over his room, and he just is full of joy.

He has a behavior where he squeezes his little body and he shakes when he is really excited and happy. It's one of our favorite things when he does that. We just melt to see his joy and his exuberance in life. He really has a lot of that.

I think if you were to meet that child in a different setting, you would miss a lot of that, because you would not know what to do with those big behaviors, which are hard. And that's why a lot of our kids are with us, because those behaviors have made their world so small, that they struggle to be in the community in a meaningful way. And that's our goal, is for them to have an enviable life, and to be engaging with their communities, and to have joy and have people who get them.

Gwen:

We all deserve to have an enviable life. That's one of my favorite phrases that you use from Joshua School.

Kristen:

Yeah.

Gwen:

I've learned so much from Kristen about dignity, because when she shares stories with me about how she was kicked down the stairs... And not intentionally, but a student is having a hard time and uses big behaviors. But, I have never heard Kristen say anything derogatory or complaining about the student. It is always about whatever the behavior is as it relates to things that are really hard for that student.

So I have learned a tremendous amount about the dignity of every human being, and looking for the root cause of behaviors versus looking just at the behaviors. So maybe you can tell us a couple more stories about some of your humans at Joshua School who maybe have pooped on you, but who you find to be utterly delightful.

Kristen:

I do. I do. Some of those students that we're helping with some of their challenges, sometimes it's a behavior, sometimes it's just a lack of control over their environments that's triggering. It's just really hard when this is how I think about it, when you have people all around you all day, and they aren't getting what you need. They don't know what's going on inside your head, and they don't know that having a wet spot on your shirt means you have to change your shirt immediately. And if you can't do that, you're going to lose it, because your sensory experience is so intense. Or you're so frustrated, because you can't tell them that you hate this book, or hate this food, or have a stomach ache or a toothache, or any of those things that are uncomfortable in our bodies, that they're going to use their body to communicate.

And so that's kind of how we see that. And we just deal with those behaviors, whether it's... One of my favorite stories or my favorite memories is one of our students had a lot of behavior in the bathroom. It was super brutal because there was a lot of poop involved. But also, it could get really unsafe in a small environment with a lot of porcelain tile. So you're like, "Oh my god, somebody's going to die, and I really think it might be me."

And trying really hard to help that student feel calm, and stay calm with their body and safe with their body. And this one student I would sing to, and he would stop what he was doing and look into my soul. I'm not kidding you. It would be just this look like, "I see you, and I am feeling calmer."

That was one of the most profound experiences I've ever had. And so whenever staff needed an extra body to support in the bathroom with the student, I would be like, "I'll be right there," and I would sing. I don't know. It's just to know that you've reached somebody who can't tell you with words.

Gwen:

Desperately needed you.

Kristen:

Yeah, needed me. In that moment, I was able to provide something that changed that situation for him in a way that helped him be able to do it safely, was just a really amazing feeling.

And it was the connection piece. The way he looked at me, I'll just never forget it for the rest of my life. He is just a really special human being, who is so busy, just so busy with his body at all times. To see him calm and focused, it's like a little miracle. So some of our guys are just really magical.

I have another student who I think she's 16 now, and I've known her since she was six or seven. And she came to The Joshua School with no language, totally non-vocal. And she talks so much now. And she has Fragile X, so she has a lot of anxiety. And it is so friendly and social, but is so bound up a lot of times in her anxiety, that it's hard for her to interact.

This child is the most joyful child, always, always has joy when they see you. Is able now to ask you, "What you did for your weekend? Did you see their mom on Instagram? Was I happy today? Did I want to get my nails painted?" Joy wrapped up in skin, just bouncing through the day, every single day. I've never seen that child not giving joy.

Gwen:

Yeah. Well, joy can come out when we feel comfortable and safe, and like we belong.

Kristen:

Right. And this particular student has really good friends. And that's another piece of The Joshua School that really blew my mind and changed my life, was seeing people who are experiencing the world very, very differently with a lot of stereotypy, a lot of stimming, a lot of repetitive behavior, a lot of aggressive or intense behavior, a lack of way to communicate, having joyful experiences with their staff, having friendships with each other.

And that really changed the way I look at friendship, because there were real genuine, very connected friendship happening there every day. Those are not students that would have a friend in a public school setting, and their families have probably never experienced that with their child in their life before.

Gwen:

Right. And may not outside of Joshua School.

Kristen:

Right. And some of the parents of longtime Joshua School students actually started their own nonprofit for adult services. It's called Treeline Pass. And they have very similar philosophies, and approaches, and provide a lot of behavioral intervention and support, which doesn't happen in a lot of adult settings. So luckily, some of our kids have the ability to go on to an adult program like that, which is pretty rare.

Gwen:

Specifically for them. There's so many vocational programs, but students like yours might not reach the point of being able to do a vocational option. But having options that are just focused on quality of life, and providing connection, and a place of belonging. They still deserve that and need that.

Kristen:

Right. And people don't just stop learning at 18 or 21. I mean, people learn their whole lives. So people with autism and intellectual disability don't stop learning either.

As a matter of fact, their twenties, and thirties, and forties is a lot of times when they're making a lot of change, because their brains grow and change differently. And so not providing them an opportunity to continue to have intervention and learning is absurd. We shouldn't be sending them to daycare, which is essentially what happens for a lot of kids.

Gwen:

I mean, that's a whole segment of population that is underserved, often not served. So if you're somebody who wants to start a new nonprofit, just call Kristen. She's got some ideas for you.

Kristen:

Yeah. Places like The Joshua School and Treeline Pass need to exist everywhere, because everybody's quality of life goes up when individuals that are experiencing life this way are in your everyday life.

And a lot of times, I think the biggest gift that I received by being a part of that organization was a humility and a willingness to be vulnerable, and to learn how to be a vulnerable leader, to lead with vulnerability, that was not in my toolkit. I did not want to be vulnerable. But you can't work alongside our students with a wall up, because they will kick your ass.

Gwen:

Yeah. They'll see right through you.

Kristen:

In all ways. They will just be like, "You are not my people." And they sense it. They know that you don't know what to do. So it's okay not to know what to do, but you have to be vulnerable, and be willing to not know, and let them lead. Let them lead you in activity, even if that's putting their forehead against your forehead, or smelling your eyelids, or licking your face.

Gwen:

How do your eyelids smell, Kristen?

Kristen:

I don't know. I hope they smell good. Or holding your hand or swinging next to you. I mean, there's just a million ways that people can communicate their interest and curiosity about you if you're willing to be vulnerable.

And that means I don't know what's going to happen. I might get punched in the face or I might get kissed on the forehead. I'm not sure, but I'm willing to go there. I'm willing to be vulnerable and not know how to handle it. And that's what changed me, and that's why I'm able now to move on into the space of life where I'm feeling vulnerable and uncomfortable with not knowing what my future looks like, outside of The Joshua School, because they've taught me so much.

Gwen:

Does it help to know that I promised to never punch you in the face?

Kristen:

Yes, but I would maybe like you to put your forehead against mine sometime.

Gwen:

Okay.

Kristen:

Smell my eyelids.

Gwen:

Well, all right.

Kristen:

Okay. That might be a bridge too far, but...

Gwen:

Maybe we'll get there eventually. But I promise next time I see you, I will put my forehead to yours, with no risk of being punched in the face. Will that help?

Kristen:

That would be awesome.

Gwen:

I think that this was really beautiful. Kristen, thank you for being vulnerable and sharing just a fragment of stories, and experiences, and insight. I think you have amazing insight, and it's going to help a whole lot of people moving forward in ways that you just don't even know yet, including this episode. There's people out there who just really needed to hear this. There's parents who are feeling validated. There's teachers who are nodding their heads and saying, "Amen sister, I have a student just like that."

We're going to be putting on our website a voicemail that you can call to share stories, to share your own insight, to share wisdom that your kids, or students, or whoever they might be have taught you.

So we would encourage you to visit the website and leave a voicemail there. It's not one that we will be returning calls from, but we would love to hear from our listeners and learn from your experiences raising your humans. And maybe even your small humans want to share their own stories with us. We would love those too. Is there anything else that you want to share with us, Kristen? I think we waited the right amount of time for you to be able... You didn't even cry.

Kristen:

I know. I'm so good.

Gwen:

You are so good. Is there anything else that you want to share? Any last insight or wisdom? I think that there have to be other schools like The Joshua School in our country. Maybe not one exactly like Joshua, but search around you.

Kristen:

Just remember that there are a lot of people in our communities that need our support, and need our willingness to be vulnerable and engage with their family members who might be different. And that families are struggling, really struggling and isolated, who have kids that have big intensive behaviors like that, and that there's a real lack of programming.

So supporting our families and our communities, but also supporting schools like The Joshua School that need donations and need support to keep doing the really, really important work that they're doing. Just know that people are out there working hard to make everybody have an enviable life.

Gwen:

Thanks for joining us for this episode of You Don't Want a Hug, Right? We'd sure love it if you'd subscribe to our show in your favorite podcast app. Missing an episode would be catastrophic.

Kristen:

And if you just can't get enough of us, join our newsletter and dig into all of our other projects and ways you can connect with us at youdontwantahug.com.

Gwen:

And food for thought. If you need to create a panic room out of your closet in order to find that parenting kindness, we offer our fullest support. See you next time.

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