The Tech Gap: What Families Raising Kids with Disabilities Aren't Told

Summary

Podcast Summary: Parenting in a Tech World

Episode: Encircle Families on Tech Access, Resource Gaps, and Supporting IDD Families in Arizona
Host: Adam Brooks (Bark Technologies)
Guest: Chris Tiffany (Executive Director, Encircle Families)
Date: April 23, 2026

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Episode Overview

This episode centers around the intersection of technology, intellectual and developmental disabilities (IDD), and family advocacy in Arizona. Adam Brooks speaks with Chris Tiffany, Executive Director of Encircle Families, about navigating disability services, bridging resource gaps, the impact of technology on IDD communities, and practical advice for families. Their deeply personal and candid conversation explores both systemic issues and individual strategies to empower children and families in the digital age.

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Key Discussion Points & Insights

1. Personal Journey and Organizational Mission

• Chris's Background: Chris shares his dual perspective as a former special education teacher and as a parent of a child with autism, which transformed his professional and personal approach to advocacy ([03:00]–[04:20]).
• Encircle Families: Formerly known as Raising Special Kids, the organization has supported Arizona families since 1979, providing guidance through complex disability systems ([05:09]–[05:54]).
• Empathy and System Complexity: Chris highlights the emotional journey families face upon a new diagnosis, emphasizing the sense of grief, unexpected challenges, and a gradual move into advocacy ([06:15]–[08:11]).

  “That is one theme that we really try to help families with, is that kind of helping families move beyond isolation and grief… to be connected to a community of support.” – Chris ([08:00])

2. System Barriers and Resource Gaps

• Entry Points and Denial: Families often enter disability services at different points (medical vs. educational), and denial or uncertainty over labels (disability, special needs) can act as barriers ([10:20]).
• System Navigation: Lack of clear information and the complexity of service providers can delay support, with families often required to self-advocate and coordinate care ([09:19]–[10:14]).

  “The systems also rely on people to execute them. If we encounter someone that might not have a sophisticated understanding… that family might be delayed in service provision for six months or… a lot of years.” – Chris ([09:43])

3. Evolving Technology and Assistive Tools

• Changing Landscape: Chris and Adam reminisce about early classroom tech (overhead projectors) and contrast it with today's accessible apps and devices ([13:03]–[14:10]).
• Assistive vs. General Tech: Assistive tech is now more mainstream and affordable, but navigating choices and obtaining insurance/Medicaid authorization remains a challenge ([14:14]–[14:48]).

  “In some ways we’re living in the golden age of technology for people with disabilities. A barrier is that… there is so much. Where do I even start?” – Chris ([15:09])

• Low-Tech Solutions: Not all helpful tools are high-tech; simple aids (like pencil grips or communication pads) can make substantial differences ([16:46]–[17:32]).

4. Tech Overload: Parent Overwhelm and the Myth of a “Magic Fix”

• Overabundance of Choice: Parents can be overwhelmed by the array of technology pitched as solutions. Integration and realistic expectations are key ([15:39]–[16:33]).

  “You see a, you know, inspirational YouTube video… and you think, ‘That’s all my kid needed!’” – Adam ([16:33])

• Role of Education and Scaffolding: Technology is just one piece; integration into broader therapy and teachings remains crucial ([16:33]–[16:46]).

5. Online Dangers, Relationships, and Vulnerabilities

• Social Tech Use: The internet can be both a lifeline and a risk, especially for IDD youth. Online friendships often serve as primary social connections, but vulnerabilities persist ([18:02]–[21:09]).

  “Right now online relationships and friendships can be even more real to individuals than whatever in person relationships they might have.” – Chris ([19:32])

• Susceptibility to Scams: IDD youth may not easily distinguish safe from unsafe online interactions.

  “He gets texts all the time… it absolutely is somebody fishing for [money].” – Chris ([20:34])

• Guardrails & Skill-Building: Teaching strategies like not replying to unknown messages, and monitoring communications, are essential for digital safety ([22:00]–[22:38]).

6. The Realities of Growing Up Online—for All Kids

• Identity Exploration: Adam and Chris discuss the universal adolescent experience of "trying on masks," now amplified (and permanently documented) by social media ([25:58]–[27:05]).

  “The difference was there’s not video evidence of that… These kids are doing that online and that lives forever.” – Adam ([27:05])

• Guardrails and Parental Oversight: The importance of digital guardrails (e.g., Bark phone, device monitoring) is underscored, with a balance between independence and protection ([27:16]–[29:47]).

  “I really like the fact that [Bark phone] is something that could be monitored… the guardrails were kind of our friends, social pressure, parents, our neighbors.” – Chris ([27:15])

7. Guidance and Philosophy for Parents

• Encouraging Social Opportunities: Parents should provide social experiences—both online and offline—even (especially) for children at risk of isolation ([30:16]–[31:01]).

  “Continue to look for opportunities, continue to practice… To be social… and don’t be afraid of technology.” – Chris ([31:01])

• No One-Size-Fits-All Solution: Each child’s needs, abilities, and interests are different; parents should expect a trial-and-error process and not fixate on a single tech solution ([34:42]–[36:11]).

• Emotional Safety and Adaptability: Prioritize not just physical but emotional safety, learning family values, and contextualizing tech use ([34:42]–[35:49]):

  “We are really concerned as adults with physical safety because we grew up in stranger danger era... but our kids are having that psychological and emotional safety be those boundaries be pushed online.” – Adam ([34:42])

• Allowing for Failure and Growth: Permitting children—especially those with disabilities—to struggle and even fail is vital for independence ([38:46]–[39:14]).

8. Assistive Technology Highlights & Practical Tips

• Low-Tech Success Story: Chris shares how a simple “Go Talk” communication pad was pivotal for his son's potty training and long-term independence ([40:40]–[41:56]).

  “That was probably one of the most useful pieces of technology that we ever had… he was able to actually tell us when he had to go to the bathroom.” – Chris ([41:12])

• Resource Referrals: Arizona’s Assistive Technology Access Program (TAP) and similar agencies can help families access and fund useful tools ([42:40]–[43:00]).
• Trial and Error Encouraged: Don’t hesitate to try new approaches, both high- and low-tech—what works for one child may not work for another.

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Notable Quotes & Memorable Moments

• On Systemic Challenges:

  “You don’t know what you don’t know, and that’s such a challenge.” – Adam ([03:53])

• On Labels and Language:

  “I might not be ready to actually say the word ‘disability’ in connection to my child. Totally.” – Chris ([11:12])

• On Evolving Parental Perspective:

  “Let your kid struggle, let your kid fail. And that’s part of this process, that’s part of this learning process.” – Adam ([38:57])

• On Opportunity and Vulnerability:

  “You want to provide the most independent, least restrictive environment… at the same time, you want to ensure you’re not actually putting that individual at risk. It really is trial and error and we don’t always do it perfectly.” – Chris ([37:37])

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Timestamps for Key Segments

• [03:00]–[05:54] – Chris Tiffany’s background; transition from teaching to family advocacy
• [06:15]–[09:19] – Common family themes: diagnosis, grief, isolation, and complex systems
• [13:03]–[17:32] – Technology’s evolution, access to assistive tech, challenges with insurance
• [18:02]–[21:09] – Online friendships and predation risks for IDD youth
• [25:58]–[29:47] – Growing up online, adolescent identity exploration, and the permanence of digital footprints
• [30:16]–[32:16] – Social opportunities, practical advice for parents, and tech guardrails
• [40:40]–[42:13] – Practical assistive tech example: Go Talk, and its real-world impact

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Conclusion

This episode offers a compassionate, practical look at what it means to raise children with intellectual and developmental disabilities in a tech-saturated world. Chris Tiffany’s hard-earned perspectives, both personal and professional, illuminate the ongoing challenges and opportunities for Arizona families—and beyond—in bridging service gaps, deploying technology effectively, and supporting each other on a complex but rewarding journey.

If you’re an Arizona family seeking support, Encircle Families is a key resource for navigating these systems. As Chris says: “Just keep trying. Don’t spend a million dollars, but if you see something that looks like it can work, that’s okay. Try it.”

Transcript

[A]

Hi, I'm Adam Brooks, program facilitator of Bark's Connected Communities program, and I'm your host today. Our guest is Chris Tiffany, executive director of Encircle Families, a statewide Arizona organization that has been helping families navigate the complex world of disability services since 1979. Chris came to this work from two directions. As a former special education teacher and in central Phoenix, and as a parent himself. His son was diagnosed with autism at age 2. Today, we're digging into something that matters deeply to families across the state. How students with intellectual and developmental disabilities are accessing and using technology, what families are already doing to bridge that gap, and where the biggest opportunities are for moving people forward. Chris, welcome to the show.

[B]

Thank you so much. Thanks for having me.

[A]

Yeah. I'm very lucky because I've gotten to know Chris Tiffany for many years. Over 20 years, I'm thinking.

[B]

I think. Yeah. 2007.

[A]

Yes. Yes. Chris and I got our masters in education together. We were in the same cohort, and so we got to kind of get to know each other and then kind of learn about those educational things, and we both became teachers.

[B]

Yeah. And that was. That was a very fun time for me. Jeremy, my son, was an infant.

[A]

Yeah.

[B]

That was before we even knew that he was going to be diagnosed with autism. And going through that program, I actually was emergency certified in the district that I was working in.

[A]

Yeah.

[B]

And in all reality, that time, having an infant at home, working full time as an emergency certified teacher and going to school, you know, and on your team, completing projects together at night.

[A]

Yep.

[B]

That was. That was. I look back at that time, it was very intense, but it was a lot of fun.

[A]

Yeah. Yeah. We had a really fun cohort. So that was helpful.

[B]

It was.

[A]

I look at others and I hear other experiences, and I'm not jealous. I think ours were great.

[B]

Ours were great. Yeah. It really made that whole two years. You know, I didn't dread to go into class.

[A]

Right.

[B]

You know, I was like, okay, I'm going to see Adam and Sarah and Hawa and Russ and all those guys.

[A]

Yeah, it was good, good, good. So you were in the classroom for how long?

[B]

I spent three years in the classroom.

[A]

Okay. And tell me why or what made you want to transition into the work you're doing now?

[B]

It's a great question. As I mentioned earlier, I was emergency certified, got my master's, became fully certified, and then during that process, our son was diagnosed with autism. So I had been facilitating meetings, working with families, working with students, but when we received the diagnosis of autism, when Jeremy was 2, I quick. My whole perspective changed when I went to work and sat across the table from a family at. With a family at an IEP meeting or a school meeting. You know, I. I really felt a deeper sense of empathy with. For them. With them. And then also, you know, understanding the kind of the very real constraints that the school systems had and providing any kind of wraparound services really relied on complex systems working together oftentimes with. With the family or the parent at the center having to kind of coordinate everything.

[A]

Yeah. It so much falls on the families and the parents.

[B]

Absolutely.

[A]

And they don't know what they don't know, and that's such a challenge.

[B]

And that's exactly right. So I continued working for about a year and a half after Jeremy was diagnosed as a teacher, then found an opportunity to be able to use my education and experience to really help train families do that exact thing, coordinate the multiple systems of care for their children to the. To the extent that they need it.

[A]

Yeah. And so you start with the organization you're with now. And so how long have you been there?

[B]

It will be 16 years in July. Wow. So, yeah. Yeah, I started in 2010.

[A]

Yep.

[B]

And, you know, started as a family support specialist, just, you know, working with. With families to. What it looks like is families kind of calling with an issue or a problem. It could be about their child's school, it could be about, you know, their state services, whatever the case is. And as a former special education teacher and as a parent with lived experience navigating those systems, I would help. I would try to figure out, you know, what their most immediate problem. Most immediate issue was.

[A]

Yeah.

[B]

And help them problem solve through that. That so.

[A]

And so now you're the executive director.

[B]

Yes, I. I moved. I had a few different positions within the organization. They, when they hired me, they really liked that I had a background in special education and they had a need for someone to direct the. What we call Parent Training and Information Center. It's a federal project that instead of circle families, has held since 1985. They, at that time, needed someone to direct those activities. So I moved pretty quickly into that role. And then when our executive director stepped down, she really encouraged me to apply for the. For her job. So I did, and now I'm here.

[A]

Yeah. That's amazing.

[B]

Yeah.

[A]

So what's probably. I mean, I'm gonna ask some questions that may not have an answer, so feel free to say no or you don't know or they don't exist, but would you say there's like common themes that you're having to help families with. And what are those common themes thematically?

[B]

You know, families dealing with a new diagnosis. So there's going to be that entry point into the world of disability. Right. Which we as parents didn't see ourselves a part of. Yeah. So depending on, you know, when that becomes identified, whether it's in the second or third grade for a child who, you know, is having difficulty reading with dyslexia, or if it's, in our case, two years old with a. With a medical diagnosis.

[A]

Yep.

[B]

The entry points all look a little bit different, but there is. That common theme of life is not going to be what I thought it was for my child.

[A]

Yeah.

[B]

And in many ways, the realization of kind of a loss of a dream for your child, you know, and that, again, that spans the whole spectrum from, you know, children that have. Have learning disabilities to children who, you know, might be total, full care. Total care.

[A]

Yeah, totally. So I think my dad's dream died for me when I was terrible at construction.

[B]

Right.

[A]

And I couldn't take over the family business.

[B]

Well, well, the truth of the matter is. Right, like, I think every parent has that realization at some point.

[A]

Yes.

[B]

I think where. Where the parents of children with disabilities may just come to that realization a lot sooner.

[A]

Yes.

[B]

And. And that certainly was the case with me right after I, you know, after we got that diagnosis and kind of went through that isolation and period and grief period, did come to the realization that, hey, you know, his life was probably never going to end up the way I thought it would anyway.

[A]

Right.

[B]

So. So that. That is one theme that we really try to help families with, is that kind of helping families move beyond isolation and grief.

[A]

Yeah.

[B]

And to be connected to a community of support, a large community of support.

[A]

Yeah. Integration.

[B]

Integration. Yep. Yep. Affiliation. Yep. You know, there are thousands of families raising children with disabilities in Arizona, and many of them experience the same systemic or systematic barriers. You know, I think, again, the entry point, when it becomes real and we get to a point where we can start navigating that and trying to understand what our rights are under special education laws or Medicaid laws, then that then becomes a much more kind of technical part of raising a child. So there. There is that again, as far as the theme goes, that that is something that I think families struggle with because the systems are designed to serve and support individuals, children and individuals and adults with disabilities, but they're just not easy to understand and navigate.

[A]

Well, and you don't know what you don't know. And so if you don't know what resources you're looking for.

[B]

Right.

[A]

I think so many parents are just like, help me. And they want help, but they don't know, like the system to navigate or what does that mean. And just because my kid has a certain area of need, there's other things that can help that kid that may have not fallen in that category and all sorts of things that they just are unsure of.

[B]

No, yeah, you're absolutely right. It's. The systems also rely on people to execute them. So, you know, if. If we encounter an entry point in a system and we encounter someone that might not have a sophisticated understanding of how the system works, then, you know, that family might be. Be delayed and in service provision for six months or eight months or a year or, you know, in some cases a lot of years.

[A]

Yeah, yeah. That's the unfortunate thing. But again, I think there's a lot of people who are in denial.

[B]

Yes.

[A]

And also, like, I can understand why, because it is different. You do get those dreams and I. Visions and ideas. Even if they're unrealistic, they're still shattered. Right. So.

[B]

Yeah. Well. And to your point, our organization Encircle Families recently changed our name from Raising Special Kids. And that was, I think, something that we identified as really a barrier to serving families.

[A]

Yes.

[B]

You know, I get a new diagnosis, whether it's diabetes or autism or down syndrome, whatever it is, and. Or if it's dyslexia or adhd. Well, I don't know that I have a quote unquote special kid. Right, right. I might have a child that has some challenges.

[A]

Yeah.

[B]

But I might not be ready to actually say the word disability in connection to my child. Totally. So. So, yes.

[A]

Growing up as a kid who as an adult got diagnosed with adhd, but as a kid was told, you just have a lot of energy. Right. So it's like it's this idea of you don't have that. You have this. And the reality is, is it doesn't matter what we call it. There's services and resources for you that. And we get hung up on these titles. And I get it. I mean, we were called special education teachers. We are not called that anymore. I'm an exceptional student service teacher. And so it becomes these labels and names. And I understand that is not a bad thing. That's a positive thing to. To be sure we're articulating it well. And yet those add barriers because of that thing that we don't want to say. This is. Even though there's services, supports and things behind it.

[B]

Yeah, you're absolutely right. I mean, and as we were talking about being Generation X. Yeah. And so, you know, Generation X is the first generation of idea.

[A]

Yep.

[B]

You know, and we are having kids now, and a lot of us who I think may have been in special education of ourselves have a certain perception of what it was in the 80s.

[A]

Yeah.

[B]

And we don't want that for our kids.

[A]

No, no. There. We don't have to be in the, you know, the back end of the school. That's outside in the storage area.

[B]

The trailer.

[A]

Yeah, exactly. It was always the trailers. And so it doesn't have to be that way anymore.

[B]

Yeah.

[A]

But. Yeah, I totally understand. Do you think there is a. Well, let me ask. Kind of go a whole different direction?

[B]

Sure.

[A]

You and I grew up in a time in an era where technology was different. Right. I taught with an overhead projector when I first started. And now we've got crazy things with devices and stuff. Are there things you're having to talk to parents about or families about in that involve technology? And if so, where do you. I know there's assistive technology and then there's just regular technology. Where do you have those conversations and what are you seeing the needs are with families, as far as that goes?

[B]

Yeah, that's. It's a great question. It's complex because there is the.

[A]

I only ask complex ones here.

[B]

No, and that's. That's good because. Well, and the way that you framed it, you know, with assistive technology and then just, you know, what's available. Right. Because frankly, you know, when Jar in 2007 or 2009 is when he was diagnosed, you know, for us, assistive technology looked like a very expensive communication device.

[A]

Yeah.

[B]

You know, which now we can. You have on your phone.

[A]

Y.

[B]

Right. For 20 bucks a month or something.

[A]

Right. With an app.

[B]

Right, with an app. But, you know, in the assistive technology world, you know, we do see barriers to. For families and accessing some of that, especially the. The complex, you know, really expensive items. Our systems are set up very well to support people with disabilities. Navigating through them can be difficult. Yep. Assistive technology authorizations can be challenging to get through insurance companies. Yeah. And through Medicaid, frankly.

[A]

Yep.

[B]

And it all revolves around, you know, an individual's medical need to be able to do that. So what I. The world that we're currently living in to where those types of. That type of technology is really accessible.

[A]

Yeah.

[B]

Is really exciting. Right. I mean, I can download an app on my phone and you Know, it can do just about anything that a communication device can, can do.

[A]

There's braille services, there's talk to text, there's all sorts of stuff.

[B]

Yes. So in, in some ways we're living in the golden age of technology for, for people with disabilities, a barrier is that. That in and of itself can be a barrier. There is so much.

[A]

Yeah.

[B]

Where do I even start? Fair, you know, where do I even start? If, if I buy this, you know, $200 widget, is that gonna solve my. All of my child's problem? Probably not.

[A]

Right.

[B]

You know, if I get this $2,000, is that gonna, you know, so I, I think there is perhaps a spec man, maybe parents of our generation and overwhelm that comes with really starting to think about technology in a way that, that can open doors for their child.

[A]

Right. Well, and oftentimes I think part of that piece is the education piece. Right. Because some families want to use that program or app, but you have to integrate it into what you're already doing and it's easy to think it's going to fix this thing or solve this thing. And it's just a piece of the therape process, not the whole therapeutic process.

[B]

Well, yeah. And family see a, you know, inspirational YouTube video, you know, of course. Oh my gosh. Yeah, that'll be. That's.

[A]

That's what we all my kid needed. That's all my kids said.

[B]

Right. And then also to the. To give a nod to low tech, you know, there are a lot of things that, that really are. Are not high tech devices. Sandwich holders and you know, those types of things that can actually really open up a lot of independence for, for individuals with, with disabilities of that nature.

[A]

I don't know what happened, but I had like a sweeping thing in my district and you may have seen it too, where everybody had special pencil grips.

[B]

Yes. Yes.

[A]

That was like a whole accommodation that was in every ip. It was like special pencil grips. And I'm like, where am I finding these special pencil grips? How to call my OT friends and be like, where do I get these? So.

[B]

Yeah, yeah, yeah. That was gonna solve, right? Yeah.

[A]

Now my kid can write. It's amazing. All I needed was a grip.

[B]

All I needed. Yeah, yeah, yeah.

[A]

That's so funny. What are you seeing? That's that are makes our kids more susceptible to general tech and tech addiction and tech struggles. Are you seeing something that like, makes it harder? Does that make sense the question?

[B]

Susceptible?

[A]

Yeah, like, you know, our kids may have a different understanding of the world.

[B]

Yes.

[A]

Because of how they've learned what's going on, the way they learn, the classes they were in. So when they get a gen Ed device, when they get just a regular phone or a regular computer, what are the dangers in that for those kiddos?

[B]

That's, you know, that's a great question. I'm gonna, going to start one way and then bring it back around.

[A]

Love it. I love journeys.

[B]

Yeah. No, and this, this kind of really came around in a conversation we were having with some researchers out of, I think the University of Illinois. We were, because it was a project that they were proposing that, that really had to do with online modules and learning and kind of be emotional regulation, behavior support, that type of thing. Thing. And I remember bringing up, because again, as we're coming up through the evolution of technology, I think there's a mindset of anybody that you meet on the Internet is a predator. Right?

[A]

Totally.

[B]

And, and what they were very quick and we had started kind of talking about this notion of, of you know, keeping kids safe online. And, and one thing that, that they kind of came back with was, well, you know, we want to be careful with that line of thinking because, you know, right now online relationships and friendships can be even more real to individuals than whatever in person relationships they might, might currently have, however limited or expansive.

[A]

Right.

[B]

And so just a nod to maybe a, a perception change that one, anybody you meet online is not necessarily going to be a predator. And that it, from what I understand and what I've heard from my nieces and nephews who are generations younger than me that have, you know, very close friends that, that were friendships were developed online and nurtured online. That being said, especially for the intellectual and developmental disability community, you know, I think there, there is a real risk of, you know, being taken advantage of. It's a very vulnerable population. You know, my son has a phone. He's 19 years old. Yeah. And you know, I do monitor what he does, but he gets texts all the time. Hey, how you doing? And it's from an unknown number, you know, and it absolutely is somebody fishing for. Totally.

[A]

Sam. Yeah.

[B]

Yeah. Hey, I need to borrow $5,000. Can you help me? You know, I mean, he gets those kinds of calls and texts. So. So I think there is a real. I think it's, it's both things. I think that the, the general technology can certainly open up opportunities for real relationships, friendships, communication, learning, all the good things. And I think that this population is particularly susceptible to abuse.

[A]

Well, in the states that we have a Medicaid waiver in for bark products for the bark phone and bark watch. We really talk about things like safety. Physical safety is an element that we can bring because of geolocation and SOS stuff. And then skill development is another area and then empowerment and independence is something that we can help foster. So I think that part of that conversation is exactly that. Where there is a good healthy side to it when there's guard rails and what does that look like? So what type of skills did you have to practice with Jeremy so that he wasn't saying, oh cool, five grand easy. I'll just ask mom. Right. Or whatever.

[B]

Right, right.

[A]

Did you have to like teach and practice skills and what did that look like?

[B]

Yeah. So with, with Jeremy. So I'll just speak from parental experience.

[A]

Right.

[B]

It's going to be different with, with everyone. But with him, I think the most important thing that we taught him was no, you don't reply to every text message you get. You know?

[A]

Yeah.

[B]

So if, you know, kind of differentiating. Okay. If a picture comes up with dad or mom on it, that's something, you know. Sure. Say hi or whatever the case is.

[A]

Yeah.

[B]

So that was, that was a skill that we had to just kind of randomly teach. And, and we do check when, when messages come in, we'll, we'll monitor his phone.

[A]

Yeah.

[B]

And then, you know, he, he is a huge fan of music videos. So he would prefer and pour one out for mtv.

[A]

Huh.

[B]

I know.

[A]

What the heck.

[B]

Yeah.

[A]

It's so funny. Yeah.

[B]

He loves so music videos and then also videos of cooking preparation.

[A]

Yeah.

[B]

Like people making cakes and cookies and stuff like that.

[A]

I love it.

[B]

So you know, his time on his phone is pretty much spent looking at YouTube videos of music videos and cooking. Cooking videos.

[A]

Yeah.

[B]

So you know, we haven't, there haven't been scenarios that we've had to really go in and you know, teach a lot of the how to be safe online type of stuff. Right.

[A]

So some of it can be really intricate because it's about nuance and reading tone and reading some things especially in group chats and stuff.

[B]

Yeah.

[A]

And so if that's not where your children is spending time, then that makes sense.

[B]

Yeah. Well, and, and I could see though I know how curious children are. Yeah. And I also know how tech savvy they are.

[A]

Yeah.

[B]

Again, Jeremy is a 19 year old. He is long term care eligible, gets services through the division. Developmental disabilities is going to be 20 next year. Still be in high school.

[A]

Yep.

[B]

And so he, you know, he doesn't have a huge interest in chat Rooms and Facebook. Like, he'll go on Facebook and he likes to, like posts because he can interact with them. Yeah. But he doesn't get into messaging and stuff. However, you know, students. Children who can more naturally communicate and want that social interaction. Yeah, there's a. There's a real. There's a real risk there.

[A]

Well, we do see. At least we're seeing nationally as an organization, and I'm sure you maybe can comment on that or parrot that or not, but where we've got a lot of kids who have some type of. An area of struggle and need, and so they isolate physically.

[B]

Right.

[A]

They're quiet in school. They don't want to respond. They, you know, kind of want to hide away in the walls. But then at home, online, they're super social and they really communicate. And part of that attachment need that doesn't get met really can serve as a easy place for them to be even more vulnerable to people reaching out, because they can recognize that.

[B]

Yeah. No, And I think goes back to the earlier point in our discussion about, you know, being cautious of being cautious of not necessarily taking away an individual's ability to. To do just that, to be social, to be maybe their true self. And maybe that doesn't. Maybe for that individual, that doesn't happen like it did for you and me in school in the quote, unquote, real world to these kids. That is the real world.

[A]

Yeah. I talk about trying on masks. It's super normal for a middle schooler to figure out who they are. I think I was a cowboy for a week. You know what I mean? I was like, I'm gonna listen to country music and Garth Brooks is my uncle and everything, and. And then I never been on a horse. I don't. The country smells like. I was like, I'm good. I'm not a country kid. And then I thought I was a gang banger. You know, I listened to Bone Thugs and Harmony and button my shirt up to the top and. And then I was like, that's not gonna work. Like, I'm not gonna be jumped into somewhere. Like, I.

[B]

Sure.

[A]

So then I was wearing a polo and parting my hair because you have to figure out, where do I fit? Am I in this click or not? Am I a jock? Am I a smart kid? Am I. You know, what are. Where am I? And I think that's normal. The difference was there's not video evidence of that. I don't have any pictures of me in these. Thankfully, in these phases. Right. I've got. Maybe two kids might remember and kind of tease me now, but that's forever ago. These kids are doing that online and that lives forever. And so as they're trying to figure out who they are, that's just the one thing where they're like, it's helpful to have those guard rails.

[B]

Absolutely. Yeah, absolutely. And. And you know, when talking to you earlier when we were kind of thinking about when. When you were asking me to come on the show.

[A]

Yeah.

[B]

You were telling me a little bit more about the, The. The bark phone. And, you know, in thinking about how that could apply to kind of our situation, you know, I, I really. I like the fact that it's. It's something that could be monitored because, you know, Jeremy's phone right now, I have no idea what's happening when he's at school. I can go back and look, but sure. But. And then the geolocation. But you're right. The. The guardrails. I think for me and you growing up in middle school and trying on masks, I think the guardrails were kind of our friends, social pressure, parents, our neighbors. You know, if I would have shown

[A]

up as a goth at school, like, I would have been.

[B]

Yeah.

[A]

In trouble by a lot of people.

[B]

Sure.

[A]

Because that wasn't a very popular clique. It wasn't a bunch of other kids that look like that.

[B]

Yeah. So, yeah, I. I think that. Not really. Can't. Having a hard time finishing this thought.

[A]

No, you're good.

[B]

But. But yeah, it is. It is different.

[A]

Totally.

[B]

It is different.

[A]

What. Tell me one of your. What did you think you were in middle school? Where did you fit?

[B]

You know, I was just so awkward that, that, you know, I was just kind of the shy kid and kind of awkward. I didn't. I guess I thought I, I was. If I had my choice, I wanted to be kind of an athlete, you know, a jock. I was always kind of heavyset, so. But I was also tall, so I could play basketball a little bit. I wouldn't say that I fit in. I wasn't on the. In the end crowd. Sure. But I just, you know, for me, it was kind of getting through middle school. That was. That was my goal. Yeah. You know, I. I wanted to. To get through. I had a couple of good friends in middle school that, That I hung out with, but, yeah, that was probably the hard time. And actually, when I trained parents, when we do parent training, that's the one thing I ask, you know, how. How many of us remember middle school? How many of us want to go back? Nobody raises their.

[A]

No way.

[B]

So, so yeah, it. Yeah. Middle. Yeah, middle school's a fun, a fun remembrance there, Adam. Thank you for.

[A]

No worries. Yeah. Trip down, you know, lane. Yeah, we get to enjoy all that.

[B]

Yeah.

[A]

That's so funny. I would ask probably what type of advice would you give parents who are navigating that like tween teen years and are maybe have a kid who's maybe a little bit more wanting to be social, a little bit more higher functioning, but also still back a few years. Right. What kind of advice would you give them about how they navigate school or how they navigate social situations?

[B]

Yeah.

[A]

With tech or without, like, it doesn't matter.

[B]

But just, you know, I think continue to provide opportunities. You know, I think many families, mine included, you know, though it's not only a hard time for the, for the student or the child, it's a hard time for the, the family raising that student or the child. Because, you know, again, I remember what middle school looked like for me. It's much different for my child and probably he was probably much, much more isolated than I was going through middle school. But continue to look for opportunities, continue to practice.

[A]

When you say opportunities, what do you mean? Opportunities for.

[B]

To be social.

[A]

Okay.

[B]

So if it's a student that, if it's a child that, you know, has an interest in being social and wants to be connected to other, other people, I think parents can play a big role in that to continue to provide opportunities for after school activities, those types of things. And don't be afraid of technology. I think, you know, not everybody on the Internet's a predator. You know, appropriate guardrails are good to have. Parental oversight is good to have huge. You know, we, you know, we have tablet and phone products that, that our child uses. Again, it does take, it does take oversight. Yeah. But I, without giving you a shameless plug, and I haven't even tried the product, I really like the, the idea of it, you know, being able to actually see what, what is going on because I think, I think that is a missing piece for us. And also the, the geolocation, you know, it, it sounds to be a little bit more, maybe a little bit more precise, maybe a little bit more intuitive.

[A]

Yeah, well, and there's a balance, right. Because I always was like, tell me when you get home.

[B]

Yeah, right.

[A]

But now you don't have to.

[B]

Right.

[A]

If you get these check in alerts and stuff. So there's a little bit of like independence it can grant. Yeah, that I think is really cool. And I don't have to be a helicopter Parent or a helicopter person anymore. Caregiver. Right, right. I can actually rely a little bit more on some of those other things to see. And part of the deal is knowing what's age appropriate, what's level appropriate, what's student appropriate and what's not. Cause there may be things that you see in Jeremy's phone and you're like, don't love it. But Also, as a 19 year old navigating this probably. Okay. You know, I joke about me trying to learn about swearing and like just confessing to my parents one time on their drive home on a Wednesday night, like, I swear at school and my parents were like, what? And that night we had to like sit down and be like, well, what do you think swears are? And I was like this, like, that is a swear. Good. Yep, that's right.

[B]

How old were you?

[A]

I was in junior high. Sixth, seventh grade.

[B]

Okay.

[A]

But that age, you learn the words and you just use them excessively because you don't really know what's appropriate, what's not, when to use them. And so I think there's age appropriate of like learning some of these things and then like also what does that mean for our family and our values and what we want to put forth in the world? So.

[B]

No, I'm sorry, I'm just, I'm envisioning that, that whole car ride and, and what that must have looked like.

[A]

I'm sure my parents exchanged glances.

[B]

Yeah, no, no, I mean, and just. I mean.

[A]

Yeah.

[B]

Kudos to you for, for even putting it out there. I.

[A]

And we were granted, I think we were coming home from youth group night and I felt probably some like religious conviction or something. So.

[B]

Okay.

[A]

There's probably some other things happening, but. And I was looking out the window

[B]

and there's always kind of like confession type of.

[A]

Totally. I just was like, I gotta, it's weighing on me and I gotta tell someone.

[B]

Okay. That. That makes. Yeah. More sense. Yeah.

[A]

Yeah. So now I don't swear at all anymore.

[B]

No, never. That's great. Yeah, that's great. Yeah.

[A]

I think that's, that's why I like the idea of the guardrails. Because it's not. There's spine. I don't love that. Right. There's guardrails and then there's nothing at all. And, and sometimes the nothing at all is like I get to take their device, I look at it, I go through it and I think that's fine too. And every family is going to see what works for them.

[B]

Yeah.

[A]

I don't believe there's one thing that works for everybody. But I definitely think, and I tell parents, bark or not use something because we need to know. We are really concerned as adults with physical safety because we grew up in stranger danger era. Everybody had a van. They were just throwing kids in left and right. Right. There was all these milk cartons with faces on them. And so we were so concerned with that that we never thought about psychological and emotional safety. And so our kids are having that psychological and emotional safety be those boundaries be pushed online and then that can actually cause some physical safety issues. But it's starting there, not the opposite. And so we have to kind of change our thinking as adults and be like, oh, what are you, you know, maybe these food videos. Great. I love that you love them. Right. Which ones are you watching? And so learning kind of what's going on there. If they're all Gordon Ramsay and he's screaming at people. You know what I mean? Like, that's going to be a different conversation that we get to have or a different look at something.

[B]

Right.

[A]

You know, I thought the way you counted as a child was to say haha. After every letter a number. Because that's how the count counted in Sesame street one. Hahaha. So I just mimic that. And I think sometimes our kids mimic what they see online. And that's xyz, Good, bad, indifferent. We have to figure that out.

[B]

Yeah, no, I, I couldn't agree with you more. You know, the, your analogy of the everybody advance and there was milk. You're right. That that's the world that we grew up in. And it was about proximity, physical proximity and making sure that, you know, do you know when it's 10, 8, it's 10pm do you know where your kids are? Right.

[A]

Yep.

[B]

But with the explosion of technology and all of this just very easy kind of global communication. You're right. It has, it's created a much. It's created both a great opportunity for social connection and at the same time a very risky place.

[A]

Totally. I always say it's a tool. Just like a hammer. A hammer can build up and a hammer can tear down.

[B]

Yeah.

[A]

We get to decide how we use it. But when we let kids decide for themselves, obviously they got half a brain, so.

[B]

Right. Their brain doesn't start to stop developing until about 26.

[A]

Right. Or if they're one of our kiddos, they may have a different challenge. Even with half a brain. You're adding another layer to that.

[B]

Right.

[A]

And so, you know, there's just things I, I think you and I both feel especially humbled and like it's extra important to us, this more vulnerable community.

[B]

Well, yeah, absolutely.

[A]

It's part of our heart.

[B]

Yeah, it's. It's tricky, right. It's challenging because on the one hand, you want to provide the most independent, least restrictive environment that you can for your child or for individual with intellectual developmental disability.

[A]

Yeah.

[B]

You want to provide those opportunities for a good life. At the same time, you want to ensure that in doing so, you're not actually putting that individual at risk. So it, it really is trial and error and we don't always do it perfectly. You know, I have opened up the phone and, and seen some things that. Oh, hey.

[A]

Yeah.

[B]

You know, and to your point earlier, you are a 19 year old, so totally. You know, how.

[A]

How are we gonna talk about this?

[B]

How are we gonna talk about this? Yeah, so. So.

[A]

Well, and it's not. We had some other people that I've talked to about this and they say a lot like, let your kid struggle, let your kid fail.

[B]

Right.

[A]

And that's part of this process, that's part of this learning process. And I think we're all in this together and we're navigating things we've never had to navigate before as a society, as families, as companies, as people in general, in society. And so that's really important.

[B]

Well, yeah. And yep, failure is the best, best teacher, right? It is, yeah, it is. I think just as a result of our conversation. You know, it is complex.

[A]

Yes.

[B]

Families do need direction. They can figure it out on their own. Absolutely, they can. And there's places that exist that can help them, that can provide some lived experience. You know, this is how we handle that situation with our child, the isolation. I think that families might participate in the self isolation where they just kind of retreat. That can, that can be very damaging.

[A]

Yes.

[B]

So rather than figuring it out on your own, there is, there's a lot of places that that can help also knowing that there is really no one perfect tool for anybody or one box. We've had probably dozens of different types of technological devices, high tech and low tech. Some used very effectively, some never. You know, one of the best pieces of technology that we had was a gotalk. Do you know what that is?

[A]

No.

[B]

A Go Talk is a flat plastic pad. About this tall.

[A]

Yeah.

[B]

It's got a button on it. So you hit the button and it just has maybe a few seconds of tape in it. And so you just. As a parent, you just flip this switch and you record something. And so for us what we used the gotalk for was I have to go to the bathroom. And then we actually changed it to I have to go number one. Number two. Right. We use different words.

[A]

Yeah.

[B]

But we had those attached to the wall right next to the bathroom. We kept the bathroom locked. So when Jeremy had to go to the bathroom, he had to push this thing and it would say, I have to go pee.

[A]

Yeah.

[B]

Or I have to go poop. And so. But that was probably one of the most useful pieces of technology that we ever had because it helped him potty. It helped us potty train him. Yes. You know, he was able to actually tell us when he had to go to the bathroom. And that was, you know, a focus from the very beginning for us. This child is not going to be employable if he is not potty trained. He can't independently go to the bathroom. Then there's no way he's going to be able to go to work.

[A]

Right.

[B]

You know, after elementary, middle, high school. Right. The expectation is that people go to work when they finish school. Right. And that's the expectation for, for my child. And I think that's the expectation for all children. Yep. And so, yeah, the go talk, that

[A]

was a great skill development.

[B]

Yeah.

[A]

Like, I love that, like scaffolding, where it's like, we're working on this, we're working on that, and then. That's so great.

[B]

Yeah.

[A]

Yeah.

[B]

So that. So again, we've. We've had probably hundreds of. Of things, but I would just say to families, just keep trying. I mean, don't. Don't spend a million dollars. But, you know, if you see something that looks like it can work, you know, that's. That's okay. Try it.

[A]

Yeah.

[B]

And there, there are programs. There's the assistant, the Arizona as TAP program. You've probably already heard of that.

[A]

Oh, yeah.

[B]

So, you know, there, there is programs that can help fund those things. But I think in the golden age of technology, I think there's a lot of promise for, for our population.

[A]

I love it. I agree. I agree. Well, thank you so much, Chris, for joining us today. This has been amazing.

[B]

Yeah, thank you.

[A]

I really appreciate it. If you're in Arizona and you need questions answered, you're working and figuring out your kiddos and their struggles in circle families is always great. They're my number one recommendation. I'm always like, call them. They can help. And everybody that does tells me so. They're so thankful.

[B]

I appreciate that. Yes. I'll just reiterate that if you're a family raising a child with a full range of disabilities, or even if it's just a challenge and we're not calling it a disability, we can help navigate systems and understand education. Yeah, I'd be happy to help.

[A]

Well, thank you for helping our families. I'm humbled, and I'm so thankful that we've been friends over all these years.

[B]

Yeah, I'm glad we could do this. This was really fun.

[A]

Good.