From Barriers to Belonging: Colleen Tomko’s Journey with Kids Together ~ 1028

Tim Villegas
Inclusive education benefits all learners. And if you want to hear why, stick around—you’re not going to want to miss this conversation.

My name is Tim Villegas from the Maryland Coalition for Inclusive Education, and you are listening to Think Inclusive, a show where with every conversation we try to build bridges between families, educators, and disability justice advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. You can learn more about who we are and what we do at mcie.org.

I’m on vacation for much of June, so I’m recording these intros and outros from one of my favorite places, Circle of Friends Coffee Shop in Woodstock, so pardon the background noise.

Colleen Tomko is a parent and advocate for inclusion. A Penn State graduate, a graduate of Partners in Policymaking, and president of Kids Together, an all-volunteer, unfunded nonprofit. Colleen believes that all students should have the opportunity to learn and grow in an inclusive environment. She has seen firsthand the benefits of inclusion for her son Shawn, who has a disability. Shawn has been fully included throughout his education. He also uses a communication device and other technology.

Here is what we cover in today’s episode:

• Why inclusion is important for all students regardless of their abilities.
• That advocacy is essential for ensuring that all students have access to an inclusive education.
• That everyone has a role to play in creating an inclusive society.

Before we dive into today’s fantastic interview, I’ve got a question for you. Have you ever felt like you’re losing touch with the people in your life, but you don’t want to be glued to social media all the time just to get updates? Well, fret no more because I’ve got the perfect solution for you: Together Letters.

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We even use Together Letters to keep our Think Inclusive patrons connected with each other. Plus, here’s the best part: groups of 10 or less can use it for free. So why wait? Head over to togetherletters.com and sign up right now. Reconnect with your favorite people because Together Letters has got your back.

And now, my interview with Colleen Tomko.

Tim Villegas
So first of all, hello, nice to meet you. I feel like we’ve been trying to set this up for a long time, so I’m glad that we finally connected. I know you—or I know of your work—through Kids Together. So why don’t we start there? Why did you start Kids Together, and how does that connect with the cartoons and the parent side and everything? Give me a little bit of background on that.

Colleen Tomko
Okay, so basically, it goes way back to my growing up. I grew up knowing people with disabilities that did everyday things. My mom had her own tax and accounting office, and she met a man named Darryl. She needed to get copies made for her business, and he used a wheelchair and had limited hand movement. She befriended him, realized he couldn’t get out and stop, and she helped him get an adapted van.

Then we ended up knowing Darryl—he’d come to our house, hang out, go to picnics, and just do stuff with us. He was just a friend of the family. My grandmother had a friend named Francis. She would go to bingo with her or come over and watch TV. Francis’s speech was a little slow and odd, and she might need help dialing the phone or counting money. Someone would just say, “Oh, Francis needs help,” and somebody would help her.

My mom was taking a class at the community college and met a lady named Lexi who used a power chair. Lexi lived right down the road from us, so she ended up driving her power chair to our house. My parents put up a wooden ramp, and she would come in, and they’d drink wine and laugh.

So my perspective growing up was that we didn’t call people by disability terms. We didn’t say something negative or think they shouldn’t be there. I just assumed people with disabilities were part of what everybody else did. I didn’t know until I was an adult that Darryl had quadriplegia from a diving accident. I never even thought of Francis as having an intellectual disability until I reflected on it years later. Lexi had cerebral palsy, and I’m still friends with her.

So when my son was born, I probably came into this whole scenario with a different perspective than most people because I thought people with disabilities were always fully included. When we decided he was old enough to go to preschool, we knew he had disabilities, but I didn’t think it would be so hard to get him in.

When we approached a preschool, that’s when it started: “He needs to go somewhere else.” That was a theme throughout his whole life—“There are places for him; he has to go somewhere else.” We looked at those other places, and they weren’t learning through play. It was all therapy and rigid, and I didn’t want that for him.

I found a place called reverse mainstreaming. It was the best I could do, but at least they learned through play, and there were kids without disabilities with them. I grew up thinking there weren’t a lot of people with disabilities. I didn’t know everything was segregated. That was my motivation—hearing “He has to go somewhere else” was a big shock.

So we got him in this early childhood school with reverse mainstreaming. Then I realized this was going to be a fight for the rest of his life. It hit me like a brick wall. I started going to advocacy stuff, went to Partners in Policymaking for Pennsylvania, and hooked up with other parents. We decided to start Kids Together to promote that people should just be part of the community and be included.

At the same time, while I was taking classes, I doodled. That’s what I do. We were learning about the history of disability and rights, and I was getting mad because I didn’t know it was such a struggle. I drew these things out, and everybody said, “You need to put these on T-shirts or mugs because you’re capturing what we’re all feeling.”

To me, it was therapy. I never made it a business, but everybody wanted it, so I kept drawing. It helped me put things in perspective. We also started the Kids Together Festival to promote inclusion in the community in ways that weren’t happening. Once your eyes are opened, you see steps everywhere, people told to go somewhere else, all these barriers.

The festival was to educate the public and model inclusion. We had people with disabilities participating and performing. We had adapted materials so kids could do art projects with universal design. We tried to model that it’s not a big deal to welcome everybody.

We also had what I call propaganda—signs everywhere like “IDEA allows kids with disabilities.” People were bombarded while having fun. We gave out materials and had booths—employment services next to the hospital doing blood pressure checks. We didn’t want anything to feel separate. It was really successful but a lot of work.

Tim Villegas
Oh yeah, no question about that. How many years did you do that?

Colleen Tomko
We did it for about five years in a row. People were sad when it stopped, but then Shawn was getting older, and I had the battle in school. People would say, “It must be hard having Shawn.” No, the battles I had to fight for him were hard. He’s easy—fun and entertaining.

I had to make him a priority. Everything I do for Shawn is bigger than him. I would never just say, “This has to be for him.” It has to be systemic. But I had to get him first. We also foster-adopted at that time, and then he ended up having behavior issues. It was very difficult dealing with schools and fighting for IEPs and services for both of them. That became more time-consuming.

Tim Villegas
So Shawn was included, right?

Colleen Tomko
Shawn was fully included from kindergarten. I went to the school a year ahead of time and said, “He’s coming. You’ve got to get ready.” They didn’t take me seriously. That’s one of my cartoons—registration questions like, “Can you hop or run? Will you sit still?” He wasn’t able to walk. They weren’t inclusive questions.

We had a meeting with 25 people telling us he should go somewhere else. We stood our ground because I had the training, policies, laws, and court precedents. The first notice of recommended placement said the reason was “because the parents demanded it.” I knew we weren’t off to a great start.

Tim Villegas
Where did they want to send him?

Colleen Tomko
In Pennsylvania, we have intermediate units with rooms for categories of disabilities. He was going to be in the nonverbal communication class. I looked at it and said, “So you want us to send him out of our community into a class with kids who don’t communicate to learn to communicate?” They didn’t have an answer.

Tim Villegas
Yeah, it is ridiculous.

Colleen Tomko
By the time he was in high school, the people who were best with him were his peers. We did a MAPS and PATH, a circle of friends. By high school, kids just took over doing stuff for him. They worked with the inclusion specialist, who got lessons ahead of time and added accommodations. Teachers didn’t even need extra help because they knew what Shawn needed.

By junior year, his peers went to the inclusion person and said, “We’re going to the prom, and Shawn is coming.” They worked it all out—checked accessibility, made sure the DJ would play Elvis, arranged food he could eat, and that his aide could come. They nailed it. He had two dates!

My favorite story: high school graduation. Traditionally, students walked across the football field, but Shawn wanted to walk independently. They changed the whole graduation so students walked on the track instead of the field. He walked down the track on his own.

When he was young, they told us, “The gap is only going to get larger.” At graduation, yes, the gap was wider—kids in front and behind—but the entire stadium was cheering, “Go Shawn!” That moment proved we were right. If he hadn’t been included, nobody would have known him.

The press was there. The next day, the headline said, “Students from Palisades Graduate,” and the photo was Shawn getting his diploma. The article didn’t mention disability. It was just normal. We nailed it.

Tim Villegas
Because of Shawn’s experience in school, how did that affect other families who wanted the same thing?

Colleen Tomko
If I came to a meeting with another family, things would happen. We were connected with legislators and state offices, testified in Congress, served on committees. If other families wanted their kids included and I went to a meeting with them, things moved. But families we weren’t connected with still got steered to segregated settings.

Sadly, after all that work, when Shawn’s younger brother came along, the door shut again. I had to start over. Staff turnover and systemic inertia make it hard. We can train people and make a difference for one kid, but unless we change the entire system, it reverts.

Tim Villegas
The parent-side cartoons—how many did you make?

Colleen Tomko
A lot. Most are from real experiences. For example, one time the class went on a field trip, and Shawn was left behind. When I asked why, they said, “When we said everyone was going, we didn’t mean Shawn.” Another time, a teacher admitted her goal was to prove kids with disabilities didn’t belong. Later, she had a brain tumor. I drew a cartoon about that.

Cartoons help me capture the whole picture. I have many on my site, parentside.com, and some in an online store. People suggested putting them on T-shirts and mugs. I don’t make money from it—it was a release.

I also worked for Arcadia Inclusion Institute for five years, helping teachers and administrators plan for inclusion. I learned most issues are miscommunication. People don’t say what they mean or listen. Some is systemic, but much is solvable. Special education should be an add-on, not a separate system. Everyone is just a student.

Tim Villegas
You were involved with Include Me from the Start?

Colleen Tomko
Yes, as a coordinator for about five or six years. Then life happened, and I had to step back.

Tim Villegas
We were talking about misunderstandings. I was on a panel with a director of special education who said services are portable and there’s only one kind of student. It’s amazing how many people don’t understand that.

Colleen Tomko
They don’t know they can ask. I helped a teacher include a student successfully and made a video about it. After showing it at a staff meeting, she asked me to take it down because others were mad—they thought it would raise expectations. That floored me.

The culture is strong. Even teachers who start out inclusive get worn down. They aren’t taught this in college, and the system changes them.

Tim Villegas
I went through an inclusive program, but when I started teaching, I was shocked at how not inclusive schools were. Even when people saw inclusion work, it didn’t always convince them.

Colleen Tomko
We had a vision statement for Shawn and read it at every IEP meeting. If something didn’t lead to that vision, we weren’t doing it. Teachers were afraid to speak up, so I’d ask, “Do you need help implementing AAC? Do you need support?” I told them, “If you don’t know how to do it, that’s fine. Just ask.”

I was persistent, but not everyone can advocate like that. Fighting for Shawn was one of the hardest things I’ve ever done. It wasn’t about him—it was about people who saw him as lesser. I had skills, training, and support. Many families don’t.

Tim Villegas
So what is Shawn doing now?

Colleen Tomko
After graduation, he spent four years at Lehigh University auditing classes and working on IEP goals. The district wanted him in a segregated program, but we fought for inclusion.

After that, we struggled to get him into a waiver program. Eventually, we got him into the Independence Waiver, then the Community Health Waiver. Now he has 28 hours of community and employment support. He works part-time at a law firm, goes to an adaptive gym, and volunteers at the library. He’s in charge of his care and his schedule.

We still worry about the shortage of quality home care, but for now, he’s doing well.

Tim Villegas
For our audience of educators, what’s one thing you want them to know?

Colleen Tomko
Everyone doesn’t define inclusion the same way. To me, inclusion is only achieved when the student is in the class, actively participating, has a sense of belonging, gets the supports they need, and works on their goals alongside peers. It’s not a moment—it’s an ongoing effort.

The term “inclusion” has been hijacked. People in segregated settings use it. We need to describe what it really means: kids in class, successful, supported.

Inclusion is a civil rights issue. When kids are included, it shows everyone that all people have equal worth. Expectations are higher in inclusive settings. There’s no harm in exposing students to the same curriculum, but there is great harm in exclusion.

Inclusion benefits everyone. Peers learn acceptance, teachers become better because they adapt for all learners. Good teaching is good teaching.

Tim Villegas
Colleen Tomko, thank you so much for spending time with us.

Colleen Tomko
You’re welcome.