Raising a Child with Disabilities: Assistive Tech, Family Impact & Advocacy

Summary

Podcast Summary: Parenting in a Tech World – Raising a Child with Disabilities: Assistive Tech, Family Impact & Advocacy

Host: Adam Brooks (Program Facilitator, Bark's Connected Communities)
Guest: Nicole Geise (Family Transition Navigator, Encircle Families)
Date: May 7, 2026

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Episode Overview

This episode centers on the unique challenges and opportunities presented by raising a child with disabilities in today's tech-driven world. Adam Brooks welcomes Nicole Geise, a mother and advocate, who shares her personal journey raising a daughter with Cohen syndrome and multiple diagnoses. They explore how technology serves as both a lifeline and a point of friction, how family dynamics adjust, the importance of advocacy, and what supports (and gaps) do or do not exist in educational and community systems. Nicole’s insights offer practical advice, empathy, and hope for both parents navigating similar situations and professionals supporting them.

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Key Discussion Points & Insights

1. Understanding Disability Language and Diagnosis

• Individual Preferences Matter: Nicole emphasizes the importance of asking how people want to be addressed regarding their disability and encourages taking cues from them.
  • “Disabilities are not a bad thing. We all have some sort of disabilities, or we will at some point.” – Nicole (02:24)
• Her Daughter’s Diagnosis: Cohen syndrome (intellectual, medical, physical impacts), autism, ADHD—“she’s got a lot going on” but also unique perspectives.
• Perspective as Strength: Nicole describes her daughter as “an incredible problem solver,” whose experiences challenge others’ assumptions.
  • Memorable story: Nicole recounts her daughter skillfully using her communication device to express a desire to “play Band Aid,” problem-solving through nonverbal cues when the tech falls short. (03:10–04:31)

2. Technology: A Double-Edged Sword

• Assistive Devices:
  • School iPad for academic work (motor and sensory accommodations).
  • Home iPad for leisure, raising questions about screen time fairness between her children.
  • Communication device (“Touch Chat” app on iPad, scaling from six to sixty symbols).
• Struggles: Balancing independence, skill-building, and safe risk-taking with the dangers of over-reliance and isolation.
  • “Technology is a wonderful thing with her and also…a double edged sword…We fumble with that.” – Nicole (05:14)
  • “You don’t want your kiddos to insulate and isolate with technology, but you want that to help foster independence and empowerment.” – Adam (06:21)
• Guardrails and the Dignity of Risk:
  • Parents must set boundaries but also allow children “the dignity of risk”—the chance to fail safely and learn from those experiences.
  • “We need to let her [fail]. It’s just trying to let her do that safely.” – Nicole (07:09)
  • “To have skill development, there is that dignity of risk. You gotta have it.” – Nicole (08:43)
• Guardrails Limitations:
  • Intellectual or legal guardianship does not mean total safety; critical to teach reasoning behind restrictions.
  • High risk of abuse for those under guardianship due to lack of skill-building and self-advocacy opportunities (09:41–10:03).

3. Impact on Family & Siblings

• Family Approach: Both children—one with and one without disabilities—are raised with similar principles but personalized execution.
• Learning Cross-Pollinates: Experiences and concerns arising for either child often prompt conversations or teachable moments for both (12:10–13:00).
• Tech Access Is Not Equal:
  • “We realized she can’t have a phone like I have a phone. She has multiple vision impairments and then the dexterity… so we would need something different.” – Nicole (13:08)

4. Socialization, Inclusion, and Authentic Relationships

• Social Segregation:
  • Nicole describes challenges with her daughter’s inclusion, both at school and in the community. Technology can bridge some gaps but is not a substitute for meaningful in-person connection (14:13–15:48).
  • "It’s very… not a lot of times where she has an opportunity for integration… Those few moments that it does happen it’s like, this is the most best thing in the entire world." – Nicole (16:00)
• Communication Devices as Voice:
  • Progression and reevaluation of device capabilities are crucial as children develop. More advanced tools enable greater participation and independence—but families often lack information or support for these upgrades (17:14–19:53).
  • “Never thought about being reevaluated for where she is in a new season of life…” – Nicole (18:15)

5. Advocacy, Skill Development, and Parental Mindset Shifts

• Raising the Bar:
  • Nicole stresses the dangers of “holding the bar low” for children with disabilities and advocates for expecting and encouraging more (20:00–21:03).
  • “We hold the bar low for so many kids with areas of concern… we’ll never know what they were capable of if we never say, you could do anything.” – Adam (20:36)
• Fragility Complex vs. Dignity of Risk:
  • Parents often treat kids with disabilities as emotionally fragile, but it’s vital to allow them to experience setbacks and learn resiliency (21:03–22:25).
• Motivation and Safe Spaces:
  • Growth and independence are often motivated by interest and external opportunities; parents may not witness all their child’s progress because home = safe refuge (22:12–22:50).

6. Transitions, Systems Navigation, and Professional Supports

• Nicole’s Role:
  • As a transition navigator, she guides families navigating the shift from childhood to adulthood (school, healthcare, community, financial, social) (23:10–24:32).
  • Emphasis on reassurance: “It’s okay to not have all the answers. I… unintentionally limited my daughter. Then I learned about dignity of risk and presumed competence.”
• Peer Support:
  • Value of parents sharing experience with others at similar stages (24:51–25:53).
• Advocacy for Options:
  • Nicole helps parents see they can make informed, proactive choices — not just react to present needs (25:54–26:08).

7. Systemic Barriers & What Parents Wish Existed

• Assistive Tech Red Tape:
  • Multiple systems (medical, school, etc.) mean resources are available, but each tries to pass responsibility (“well, you do it”).
  • “If you pour in, invest into her now… that’s going to pay off in the long run.” – Nicole (29:18)
  • Wish: Families would get the support/technology matching assessment recommendations without a fight; early prep avoids delays when milestones arrive (29:49–30:28; 30:44).
• Proactive Approaches:
  • Both agree on delivering education and supports before the child “needs” them (e.g., digital citizenship before device ownership; job skills before legal working age).

8. Empowerment Through Failure

• Letting Kids Fail:
  • Parents must allow children to fail and learn; “when we remove every obstacle… we don’t recognize who they are when they grow up because we haven’t given them… challenges.” – Adam (11:25–11:57)
  • “I wish parents would feel comfortable to fail with their kids so that they’re… [equipping] them for this whole battle.” – Nicole (32:39)
• Building Self-Advocacy:
  • Involving kids in advocacy (even over battles for services/devices) prepares them for challenges in adulthood.
  • Nicole shares how she stayed the course in a tough classroom situation to teach resilience rather than intervene reflexively (32:39–33:29).
  • “What does that teach her? That I’m gonna come in and swoop in, save you every time it’s hard… She needed to learn how to advocate.” – Nicole (33:15)

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Notable Quotes & Memorable Moments

• “She lives in an inaccessible world and views it very differently, which can make it really easy for people to magnify deficits versus [see] the opportunity… of the different perspective that she has.” – Nicole (02:49)
• “I’m so grateful that it’s 2026 and she’s 15 versus 1926. And yet…to make life seamless for her is very difficult.” – Nicole (03:16)
• “Don’t tell me she’s developmentally delayed. Because she’s clearly [not],” (in reference to her daughter’s eye roll) – Nicole (04:02)
• “If I could wave a wand for all families…you get the assessment and you just get what you need. ... Let’s not give you less either.” – Nicole (29:49)
• “We have taken the agency away from our kids. ... More and more I push people to say, that sounds tough. What do you think you should do?” – Adam (34:06)
• “We fumble through life with them so they can see that their parents don’t have this all together either.” – Nicole (35:21)

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Timestamps for Key Segments

• 02:09 – Nicole explains her daughter’s diagnosis and the family’s approach to language.
• 03:10 – “Play Band Aid” story: communication device, miscommunication, and problem-solving.
• 05:14 – Devices used in daily life; technology’s benefits and downsides.
• 07:46 – Discussion of the three buckets: safety, skill development, empowerment.
• 09:41 – Pitfalls of using only restrictive guardrails and not developing skills.
• 13:08 – Device differences for a teen with multiple impairments.
• 16:00 – Social isolation and celebration of rare inclusion moments.
• 17:14 – The evolving need for better communication technology and reevaluation processes.
• 21:03 – Fragility complex vs. dignity of risk.
• 23:10 – Nicole explains her work as a family transition navigator.
• 29:49 – Discussion of systems, barriers, tech provision wishes.
• 32:39 – The importance of letting children fail, for both skill and self-advocacy development.
• 33:14 – Personal story: intentionally not intervening so her daughter can build advocacy skills.

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Tone and Takeaways

The episode is warm, honest, and practical, filled with lived experience and professional insight. Nicole and Adam both blend empathy with actionable guidance, using humor and real stories to normalize setbacks and encourage forward-thinking advocacy. The core message: foster independence—through technology and through opportunity for failure—and raise the bar for what children with disabilities can achieve.

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Recommended for:

• Parents raising children with disabilities
• Educators and school support staff
• Policy makers and advocates in the special needs/tech accessibility space
• Anyone interested in cultivating resilience, empowerment, and authentic inclusion in young people

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End of Summary

Transcript

[A]

Welcome to the show. I'm Adam Brooks, the program facilitator for Barks Connected Communities, and I'm excited to be your host today. Our guest is Nicole Geise, a family transition navigator at Encircle Families, Arizona's federally funded parent training and information center. But more importantly for today's conversation, she's a parent. She's lived a journey firsthand, raising a child with a rare diagnosis. Nicole joins us to share her story honestly and openly about the role technology has played in her child's life, the moments of frustration and discovery, and what she wishes she would have known sooner. If you're a parent trying to figure out where to even begin or a professional trying to support them, this one's for you. I had the great opportunity of meeting Nicole Geisse when she came to my classroom. I taught college at Phoenix College EDU 222 Introduction to the Exceptional Learners, where I got to teach Future teachers about 150 different disabilities and get them excited about working with students who may have these concerns. So I love that class. I taught it in person for quite a while, and I got to have Nicole and some other moms come in and talk to my students about what it was like having a child with a diagnosis and what did that mean, and how did that change your household? How did that change you? How did that develop over time? And so I'm so thankful you're here. Thank you so much for joining me.

[B]

Yeah, thanks for having me.

[A]

Yeah. Yeah. I guess the first question we've got is, you know, walk us through your child's diagnosis so that we can get it right. And I'm not, you know, saying the wrong thing, because that's always something I think a lot of us are insecure about or unsure is like, how do we address these concerns? And what do we say that's right versus, you know, can be a little awkward.

[B]

Yeah. And you did it right. Just right there.

[A]

Okay.

[B]

Because everyone. Everyone's different.

[A]

Totally.

[B]

There's all different kinds of ways that individuals with disabilities want to be, how they want to be introduced as, and how parents reference their children. So taking the lead, I think, is the best way to do it. Disabilities are not a bad thing. We. I'm wearing contacts, Right.

[A]

Yeah.

[B]

I have a lisp. We all have some sort of disabilities, or we will at some point.

[A]

Yep.

[B]

And so our daughter, she has a rare genetic condition. It's called Cohen syndrome.

[A]

Okay.

[B]

And it impacts her intellectually, medically, and physically. Okay. We just say she's got a lot going on.

[A]

Yeah. Yeah.

[B]

And. And then she's got a secondary diagnosis of autism, adhd, all kinds of things.

[A]

Yeah, all the things.

[B]

Yeah.

[A]

Yeah.

[B]

So she lives in an inaccessible world.

[A]

Okay.

[B]

And views it very differently, which can make it really easy for people to magnify deficits versus realizing the opportunity they have of the different perspective that she has and how she can share that perspective in a meaningful way with them.

[A]

Can you give me an example of a time that she shared her perspective that was like, oh, wow, she's just

[B]

an incredible problem solver. Again, I mean, we look at it. She's got an inaccessible world, and there's lots. I mean, I'm so grateful that it's 2026 and she's 15 versus 1926.

[A]

Right, right. Yep.

[B]

And yet she. There's still just a lot that. To make life seamless for her is very difficult. So, for example, she's got a communication device. It's phenomenal. She's phenomenal with it.

[A]

Yeah.

[B]

Yet she's limited by what's on that device. And I was just reading on Facebook this morning, I'd shared a post. It was a memory from so many years ago where she was telling me band Aid. And I'm like, oh, do you need a band aid? Like, and she rolled her eyes. I'm like, don't tell me she's developmentally delayed. Because she's clearly.

[A]

Yes. Yeah. That roll. I can. Is cross every category.

[B]

Yeah. And she said, I want to play Band Aid. And I was like, all right, that's more clear, but not fully clear. And then she walked to the garage and knocked on the door, and I was like, oh, that's right. She had a toy that was like a rolling hospital kit. So that's what she was trying to tell me.

[A]

Right.

[B]

And I was like, she's brilliant. Right. Problem solved. She's right. I'm the one who had the deficit at that point.

[A]

But totally.

[B]

So, yeah, again, I think an incredible problem solver, and she has a really great perspective, but depending on the person who's interacting with her, they might be like, bandaid. What are you talking about? And then just dismiss her.

[A]

Right.

[B]

And move on.

[A]

Right, right. And I think that's common even for typical kids. Right. When you don't understand right away, you can just kind of assume and pass over and. And that can be problematic for everybody.

[B]

Yep.

[A]

So I guess that's in a really great way that it tracks.

[B]

Yeah. Yeah.

[A]

What. What other devices does she use in her daily life?

[B]

That's tough. She uses an iPad at school. She has low muscle, low muscle tone, and she's got sensory processing as well. And those things combined with her other IT writing is just nearly impossible for her. But she's phenomenal with technology. So she's got an iPad that she usually does any of her schoolwork on. We have a separate iPad at home that we'd love to use for leisure. I don't know if it's an addictive personality, if it's. Or just her personality. But technology is a wonderful thing with her and also it's a double edged sword. Right, right. So for all of us. Yes. And we fumble with that. We fumble with. How can we one, give her the tools she needs but also give her quality of life. Right. You don't mean my son doesn't have to earn tv, he just gets to watch tv. Sure. So how can we do that with her while also realizing that this can be a stumbling block and if people are looking for that solution, I don't have it.

[A]

Yeah. Well, it's tough. Right. Because you don't want your kiddos to insulate and isolate with technology, but you want that to help foster independence and empowerment. Are there ways that you've seen that you can do that or that she's done that or maybe the schools help with that.

[B]

I think what we are trying to balance is we have our own set of morals and values.

[A]

Yep.

[B]

And then we also have our own personality perspectives and we're trying not to impart our personality perspectives on her. Right. So we can do things this way. You should be doing these things this way. And also trying not to be like, well, this is a disability related thing. Or this is a. It's. You are a whole person.

[A]

Yes.

[B]

Everything impacts you.

[A]

Right.

[B]

And the reality is she's a teenager, so that forward thinking part of her brain is not yet developed. She doesn't have a ton of experiences with things and she needs to fumble, she needs to fail. And we need to let her. It's just trying to let her do that safely. And so we're really trying to lean into what guardrails are out there that will allow her to fail safely. So then we can come alongside her and be like, hey, talk to us about why you did this. Let's talk about why that's not safe. And then ultimately when she's older, she gets to make those decisions for herself.

[A]

Totally. Totally. We talk about three buckets a lot in our program, which is physical safety, it's skills development, and then it's going to be empowerment, independence. And how do we try to foster those either with our products or with just talking to students in general and families. Because those really are the categories that we think about a lot. Physical safety, I think sometimes we think about a ton. Because we grew up in the stranger danger van. Throwing you in the.

[B]

You know, everything's going to kill you.

[A]

Yes, exactly. The milk cartons and all of that. And our kids, what we're finding is that we're giving them devices, and then emotionally and psychologically that starts to be a little unsafe first. And then they can get lured out for, like, physical safety issues. But it really starts there. And so I totally understand. It's a. It's a tricky thing to provide independence and empowerment and skill development and then also find out when they fall.

[B]

Yeah. I love that skill development piece of it. Because it. To have skill development, there is a. There's that dignity of risk.

[A]

Yeah.

[B]

Gotta have it.

[A]

Yes, totally. What can you share? Maybe one or two, like, teaching moments you've gotten to have in those kind of areas.

[B]

She's really taught me.

[A]

Okay. Yeah. Yeah.

[B]

There's been times where we thought, okay, you know, she's younger. Intellectual disability. So clearly we know more than her and thought we had set up guardrails very well. And yet she would find ways to navigate outside of those on her own, which is impressive.

[A]

Yep.

[B]

And terrifying.

[A]

Yep.

[B]

But I think it also just shows that we can't use guardrails as the safety feature.

[A]

Yeah.

[B]

And we see this a lot with. There will be people who will. I'm going to protect my kid from everything. Right. I'll get guardianship. So I will make all the decisions for them, and then they will be safe.

[A]

Yep.

[B]

And the reality is, if you. I mean, the statistics show that those under guardianship have very high statistics of being abused. And it's not because of guardianship. That's not a magic thing that makes you more susceptible, but it's the mindset behind it of, if I'm going to make all your decisions and protect you, you don't. I don't have to teach you that skill development. Right.

[A]

Yep.

[B]

So what we've learned is, like with technology, that even if we set those up, we need to explain to her why we've set them up. And, I mean, it's a lot easier. I'll just be honest, like, with our son, who can talk back to us very fluidly and you have those conversations with him, we feel like we're having those conversations at our daughter. But yet I've learned she. She is taking in her entire environment. So Presuming that competence is giving her that information and then that dignity of risk of, okay, I'm going to honor you with this much freedom and then we'll see what happens from there. So that's the approach that we're trying to take, especially as she gets older and technology is going to play a huge role in her academics, in vocation, in independent living, and again, just in recreation. And that not only skill development, but you know, personality development.

[A]

Yeah. I mean that's that last piece of empowerment. Right. Like we want kids to grow socially and like have conversations with friends and build connections. But that's why things like you mentioned guardrails, that has to be just one component. Right, Right. It's still an important component, but it can't be the only component.

[B]

Exactly.

[A]

And so I see the same when I talk to families because you know, we are who we are because of the way we grew up. Right.

[B]

Yep.

[A]

I've got drive, I've got a job I like to go to, I've make my house payment on time, you know, all those things because of how I grew up and the challenges I had that taught me lessons. And so when we remove every obstacle and every challenge from our kids path, then we don't recognize who they are when they grow up because we haven't given them maybe some. Okay. Challenges. Right. Things that they can go through. I'm not talking about dropping your kid off in Tijuana with 20 bucks and good luck. Right.

[B]

But urgent care visits, emergency room visits.

[A]

Yes, exactly, exactly.

[B]

You heard a little bit right here. Too much.

[A]

Yeah. Nope, I agree. 100. So how does that impact. You've got two kids.

[B]

Yes.

[A]

So how does that impact your, your son if, if your daughter's got all this technology. Right. Because it's needed and he does or doesn't. What is that? How does that go? Is he showing her things that like she can find online or is she showing him things like to get around certain games or. You know what I mean?

[B]

Yeah. I mean right now they're, they're pretty separate when it comes to technology. But what they're not separate in is our approach. What we realize is there's times that things will come up for her and we're like, oh, we really need to be talking to our son about this because they're five years apart.

[A]

Okay. So 10, he's five years younger. Okay.

[B]

Yep. And then there'll be incidents that will come up with him that will make us realize, oh, we really need to be talking to her about this so that's good, bad or indifferent.

[A]

Yeah, it's.

[B]

It's helpful to us because we'll realize, I mean, for example, our daughter's 15. Most 15 year olds have phones.

[A]

Yep.

[B]

And we realized she can't have a phone. Like a. Like I have a phone.

[A]

Right.

[B]

She has multiple vision impairments and then the dexterity. So we would need something different. And I'm not tech savvy at all.

[A]

Sure, sure.

[B]

Oh, I'm like, tell me the things out there. What do we need? And so we're looking into an I had with cellular capabilities. That way she can use that. But then with that comes. Okay, well how do we. How do we lock it down but then give her some sort of freedom to fail within it? Yeah, it's. We're basically, we're fumbling through.

[A]

Totally. What do you think are any gaps that you are noticing with your. I mean, 15. Right. And goes to like a gen ed school, obviously in probably a self contained class, I'm guessing.

[B]

Yeah.

[A]

But like, what do you see are some gaps or some things on the horizon that you're like, oh, this is coming down the pipe and we may need to like figure this out. Maybe not with tech, maybe just with personalities or social connections, that kind of stuff.

[B]

Yeah, I think it's hard. Like to your point, you're talking about how we want to make sure they have social connections. Right. And us trying.

[A]

Does she have friends that she talks to over like messaging and stuff?

[B]

Well, her friends will text me.

[A]

Okay, got it.

[B]

But our son's friends text me too.

[A]

Yeah, no, I'd love that.

[B]

But I think the there. It's kind of twofold. Right. So on one hand, I don't want either of our children to think that connecting virtually is a meaningful, authentic connection. Can it be? I have friends over Facebook that I've never met in person because we met through the Cohen syndrome community or whatever. Community. And it's been great. But we also know that that's a lot of potential for just false. Right. False representation, 100%. So there's that. And then the other part of it is I'm very much a social butterfly. I love meeting new people and being out there. My husband, if you were to ask him to come on here, he'd be like, that sounds like a lot of. And that's our daughter T. So if I can't encourage her to go out and do all these things, she might more fully enjoy texting or emailing. So it's trying to help them understand how to develop authentic relationships and that Technology can be a tool, but not a replacement.

[A]

Right.

[B]

And that's really hard when you have a child with multiple disabilities, because the reality is she's segregated.

[A]

Yeah.

[B]

She's segregated at school, she's segregated out in the community. It's very. It's not a lot of times where she has an opportunity for integration.

[A]

Yeah.

[B]

And we have to try to do that. And it's a lot of work. It takes a lot of effort. It's not usually organic. Those very few moments that it does happen, it's like, this is the most best thing in the entire world.

[A]

Yeah.

[B]

So I'm really hoping that we can lean into. I'm hoping technology will help be a facilitator of that. We can get her better communication devices, better tools that will allow her to initiate when she wants to, versus it being this cohort. Hey, we're going to try to get you to. To use this tool for this reason.

[A]

Right, Right. Does her communication device give her a voice at all or not quite the way you would want?

[B]

It does. What I did not know. So our daughter was back when she was in early intervention, a speech therapist was like, hey, have you heard about these communication devices? And I was like, no. And at that time, I had no idea just how much I was limiting our daughter.

[A]

Right.

[B]

All we knew at that time was we were trying to keep her alive. So, yeah.

[A]

You had a lot to worry about

[B]

anything outside of that. I was like, that sounds like there's no way that's gonna happen.

[A]

Right.

[B]

And. And at the time, she wasn't even using her pointer finger, so she just hit everything.

[A]

Yeah.

[B]

She can't use technology.

[A]

Right.

[B]

And. But we were told, hey, it's free. And at the time, we could not pay our bills. We're like, if it's not a cost to us. Absolutely.

[A]

100% if it's in a waiver and I can get it.

[B]

Sure. I mean, yeah. So she was evaluated and thankfully the team she was evaluated by was incredible because she evaluated well at some sort of level, but they saw she's going to surpass that pretty quickly.

[A]

Yes.

[B]

And so they gave her the recommendation for something higher, which was fantastic because she did. So she has Touch Chat on an iPad. It's an app. And she started with, I think six squares and then moved to 12 and now she's at 60. And.

[A]

Yeah.

[B]

And she's needed re evaluations throughout. So she could get. Because iPads, they purposely make sure that you.

[A]

I know.

[B]

Gotta get updated.

[A]

I know. They just made a law about that

[B]

in Some other places, yes. But. So we've gone through that process, and to us, it was just part of the process. You get reevaluated, you get the same thing.

[A]

Right.

[B]

Never thought about being reevaluated for where she is in a new season of life and where she'll be going. Because we were constantly told, it's. It's your voice. You don't change your voice. I'm like, but people do learn new languages.

[A]

If I sounded like this when I was younger, then that's terrifying.

[B]

Well, and even just the fact of, like, you, you can't can learn new languages, you can move somewhere and get. And gain or lose an accent. Right.

[A]

100%.

[B]

And then a lot of it is fine. Motor plan or it's motor planning.

[A]

Yep.

[B]

So the concern was, oh, well, you know, if we change it, then. And I don't want to speak for everybody, but in our daughter's case, she's very flexible. She's a fast learner. It would have been a really great opportunity to say, so what we're finding now at 15 is I'm looking for all these devices. How can she email, how can she call and text? How can she do these things? And there might be communication apps out there that do at least half of that, if not more. But in any of those evaluations, that was never brought up. So. And the only reason I learned about this is from her current speech therapist, who is the best.

[A]

Yes. Yes.

[B]

And she graciously introduced me to an AAC consultant who also took over an hour of his time to just talk and walk me through, teach me, which is really great. But I. I have a very supported husband.

[A]

Yep.

[B]

I have a job that gives me a lot of flexibility.

[A]

Yep.

[B]

I'm able to do that. What about the families who don't. Don't.

[A]

Yeah.

[B]

And. Or who have a really great speech therapist who doesn't know these things.

[A]

Right.

[B]

So that's a really long way to answer your question.

[A]

No, but I think you hit the really the nail on the head when you talked about, like, the opportunity for growth. And we always provide stuff for kids where they are currently at, and that keeps them there longer instead of thinking about what do they need next. And so, so many families in your position are trying to survive and Fair. Right. There's a lot going on in the world. There's a lot. I mean, that's going on in your household and with kiddos. So I understand that. But if we can step back a little bit and look at where do we want them to go? Julia Leithcott Hames has a book called Raising an Adult. And in it she talks about what values, what things do you want your kid to have when they're older and if we can backwards map, what do we need to do now to get them there? I think that's a little bit in the same way of like I want my kid to be able to have more of a voice. So let's figure out a way to kind of grow that already so that we're holding the bar higher. We hold the bar low for so many kids with areas of concern that it breaks my heart because it's like we'll never know what they were capable of if we never say, you could do anything.

[B]

I think it's the fragility complex. Right. So there they can be very fragile medically and physically, but there's this tendency to think that they're fragile emotionally as well. And the reality is maybe they are. But our kids are going to get hurt, their feelings are going to get hurt. They will get taken advantage of. There's it's. That is going to happen. All of our children.

[A]

Yeah.

[B]

So it's not protecting them from something bad ever happening. It's loving them enough so that they can have that freedom to fail to come to you and say, this happened to me or I did this.

[A]

Yeah.

[B]

And how can I go from here? This doesn't define me. This doesn't drastically change the trajectory of my life. What can I. It's building that self confidence, that skill development. And we can do that with our kids with disabilities, no matter the level of them. It's harder.

[A]

Yes.

[B]

You don't always see, I admit with our daughter there's times where I'm like, we're just not seeing this. And then out of nowhere, seemingly out of nowhere. I mean, the reality is, what's her motivation?

[A]

Totally.

[B]

But if we can give her that motivation, then she has a reason to meet the higher bar to show you up. Well.

[A]

And also you're rarely going to see it.

[B]

Yes.

[A]

Because you're home. You're a safe place.

[B]

Yeah.

[A]

I go back to my parents house every Sunday for family lunch and I still can't find where the ketchup is. You know what I mean?

[B]

But mom's gonna find.

[A]

Mom's gonna find you right away. And I. I didn't move anything. Yeah. I didn't move anything to look. And I look like I'm, you know, eight again because that was my safe place. And they're in the same house that I was when I was eight. So it's easy to fall back in those comfort things. And so sometimes it does take someone on the outside to go, I recognize this in your kid.

[B]

Yes.

[A]

And let's, let's see this go further.

[B]

Yep. 100.

[A]

Yeah. So tell me about a little shift, like your job that you get to do. What are you helping families through? How are you working with them? And what kind of message or story or road map are you providing for those families? Yeah.

[B]

Great question. So I'm just listening to families at first. You know, what, what have they done? Where are they at now?

[A]

Explain really what. How does families get to you? Like what?

[B]

Like, so I am the family transition navigator.

[A]

Okay.

[B]

Which means I help families with that transition portion. Transition being transition from childhood to adulthood.

[A]

Okay.

[B]

Which is all encompassing.

[A]

Oh, yeah.

[B]

That is your social community. It's financial, it's school, it's your pediatric healthcare to adult healthcare. I mean, it's so much which is overwhelming.

[A]

Oh, yeah.

[B]

And families, you can't know what you don't know. And a lot of times, like you said, we keep kids, we address them where they are at now and we keep them there longer. And with parents, the same thing happens. Okay. We're just gonna talk to you about where you are right now.

[A]

Right.

[B]

Versus helping you plan for two years ahead.

[A]

Where do you want to be?

[B]

Right. Well, and, well, and this is coming. They're going to be 18 at some point. So I try to one let families know, like, you didn't fail your kid. I mean, first of all, technically we all fail our kids at some point.

[A]

We can't not.

[B]

So it's going to happen. And so you're fine, you're a great parent. You failed them. It's great.

[A]

Like everybody else.

[B]

Like everybody else.

[A]

Yeah.

[B]

But also letting them know, I, I've been there and I'm there right now.

[A]

Yeah.

[B]

And it's okay. And here's all the things that we can lean into. And what seems to help with a lot of families is being able to talk with somebody else who's going through the same thing.

[A]

Right.

[B]

Emotionally. And the logistics and the systems of it. And it's okay to not have all the answers. I know for me, I told you, I used to unintentionally limit my daughter.

[A]

Yeah.

[B]

And I took a, an incredible advocacy class. And they were talking about dignity of risk and presumed competence. And I'm like, that's great for you.

[A]

Yeah.

[B]

Because I didn't see the disabilities that were being represented, did not represent my daughter.

[A]

Yeah.

[B]

So I thought, well, that's for them, but not for us all. I'm gleaning all this information to help other people. And it wasn't until I saw they showed a YouTube video of a 20 something year old woman who mimicked a lot of our daughter. And the parents also seem to represent us. They weren't like we always believed in her. They're like, we were terrified of her living on our own. Every parent's terrified of their child, of course. And that's really what, where my paradigm shift happened. And so that's where I'm trying, I'm not trying to make every parent have the same beliefs and values and pathway that I do.

[A]

Right.

[B]

But I just want them to be able to make informed decisions and be aware that these are options should you want to pursue them. And also, it's okay if it sounds like this is way too overwhelming right now.

[A]

Right. Baby steps.

[B]

Yeah.

[A]

It doesn't have to be from here to there.

[B]

Yeah.

[A]

You know, I, I taught high school special education for 15 years. My kids were a little more higher functioning SLD kids with learning disabilities. But I also would do best buddies programs where we would have kids come in from other schools and work with them. And the conversations I had to have with my students was don't assume, don't assume. And I think sometimes even as parents we assume. And of course we do. My parents still assume things about me. Like, I can't find the ketchup.

[B]

That's an assumption that's actually pretty accurate.

[A]

Yeah.

[B]

Yeah.

[A]

And that's sometimes that's based on that. I remember when my cousin called me and I was in special ed at the time and she said, my son is getting diagnosed with autism. And I said, okay, we have two choices. We can just be sad and we can give him everything he needs and we can just see where it goes. Or B, we can take the reins and go, what therapies do I need to start now? What work can we do now? We get really proactive. Right. If we want him to be higher functioning or if we have the ability to do that, or we have the ability for him to live on his own one day or whatever, fill in the blank of what we want, then let's start using that to start seeing what we can push now. And he's great. He's getting into a college and being able to go. There's a college, I think, in New Mexico where he's going to go and live on his own and go to that serve his area of need. So there's options that we can do. But it does take that foresight and it took me, who's outside of it, to go, hey, like, we have other options. I know. And yes, we can grieve and we can all the things. And I'm not saying it's not going to be hard.

[B]

Right.

[A]

But there are some things that we can do.

[B]

Yeah, absolutely.

[A]

I love that you're able to do that for families.

[B]

Yeah, it's great.

[A]

It's got to be great.

[B]

I. I tell people I get paid to do what I would do for free.

[A]

Yeah, exactly.

[B]

Don't tell them back. Cut that part out.

[A]

I do have Chris on later today, so I won't tell him.

[B]

Yeah, later.

[A]

Yeah, exactly. Exactly. That's so funny. Yeah. Another question. If you could wave a wand and give your kid whatever technology, assistive help, whatever, what would that look like?

[B]

Oh, that's a loaded question. Because we are battling, trying to get her technology right now.

[A]

Happy to write a letter.

[B]

Thank you. Might need it. So she, because she has multiple, multiple disabilities, she also navigates multiple systems.

[A]

Okay.

[B]

And on one hand, it's really incredible to have because that just means we have a lot of people on her team that we can just reference and ask questions and get input. It also means there's a lot of, well, you do it. Will you do it. So, and, and I get it. Right. It's. It's when you have multiple disabilities and you have complex disabilities, that usually means that it costs more money to support you. What we're not thinking about. And this can kind of be controversial because it sounds like you're making your child a budget line item. I'm not doing that.

[A]

Right.

[B]

But our systems do 100%. So the reality is, is if you pour in, invest into her now, whether that's through effort, money, or time, that's going to pay off in the long run.

[A]

Yep.

[B]

Versus It's. That's why we have early intervention. Right. So all that to say they did the assessment, but no one's wanting to actually provide the recommendations from the assessments.

[A]

Yeah.

[B]

There's a lot of point. So I would love to wave the wand for all families that it's, you get the assessment and you just get what you need.

[A]

Yeah.

[B]

You don't need more.

[A]

Right, right.

[B]

But let's not give you less either.

[A]

Right, right.

[B]

And there's this idea of, well, she's 15, she can't even work, which is 100% true. But if we start at 16, we're going to delay a year of identifying those barriers. And the barriers, sure. They're going to be through her, but they're also going to be through systems. We're going to think that this is going to be good for her and then we're going to realize, oh, this wasn't so it would just make sense, start earlier so that she could get that job at 16 and be successful.

[A]

Totally.

[B]

That would be the wand that I would wave.

[A]

I get it. I. Our connected communities program that I'm a part of, I go into fourth and fifth grade classrooms and talk about digital citizenship. Because we want to talk about things before kids get devices, not after. Right. I don't want to teach Drivers Ed at 18 and I don't want to

[B]

be charging two years.

[A]

Yeah, exactly. And I don't want to teach kids how to be safe on social media when they're 15 and they've had it for three or four years. That doesn't help. So trying to capture ahead of time, I think is. Should not be as revolutionary as it is.

[B]

It's not.

[A]

And yet it seems like that's always a surprise for people. So. Yeah, I get that.

[B]

And as a mom of a fourth grader.

[A]

Yeah.

[B]

I appreciate that.

[A]

Yeah.

[B]

That you are doing exactly what you're doing. Because when we tell our kids things,

[A]

it's always the guy in the white glasses. I get up there and I say it and they're like, that's very sweet. Calm down. I'm that cool. But I all the time where kids are like, oh, that makes sense. And then the teacher's like, I've been saying that for weeks. Of course it takes one more voice.

[B]

Yep. A different voice.

[A]

Yes.

[B]

Never heard this before.

[A]

Oh, my parents didn't know anything.

[B]

Well, it's like Charlie Brown syndrome. Right? To hear.

[A]

Yep. Totally. Totally. If I could say with humor, I could see in a different way, happy to do it.

[B]

I think really it's easy to say. It's not easy to live out, but it makes sense. I mean, for us, we have two children and everyone's different in general. Boy, girl, five year. We've got a teenager, 10 year old, one with multiple disabilities, one who was test tested for giftedness but didn't test. But we're like, aren't you though? So very different kids. And we can still approach them the same way, but individualize what that walks out like. And I, I wish parents would feel comfortable to fail with their kids so that they're. And allow their kids to fail because I think we do them. Like to your point, it's a service. Right. We, we say that you're, you can't handle failing. You're not strong enough to do that. And what does that speak to their self worth.

[A]

Yeah.

[B]

Versus letting them fail and be like, yeah, that's fine. So it's okay. I fail to equipping them for this whole battle that we're having with our daughter and her technology. We've included her in that. And I'm letting her know, like, because she is going. It took us in second grade. A gen ed teacher did not believe our daughter belonged there and did not give her a desk. And there was a lot of people were like, I can't believe you're keeping her there and you're not seeing pursuing the school. And I thought, well, first of all, what does that teach her?

[A]

Right.

[B]

That I'm gonna come in and swoop

[A]

in, save you every time it's hard.

[B]

Exactly. And yes, second grade is super young. But I also knew that she had tons of love and support at home. She did have tons and love and support at school, just not in that classroom.

[A]

Yeah.

[B]

And tons of love and support outside. And she needed to know that people were not always going to love and support her. Yep. And she needed to have a voice. She needed to learn how to advocate. And now I have a 15 year old that I'm like, okay, you need to reel it in.

[A]

Glad I get your voice advocating.

[B]

Give you a platform. Reel it in a little. But When I was 15, I was the same way.

[A]

Yeah. Well. And I hear that all the time from parents. We're like, I want to raise a strong, independent child. And they were like, but like later.

[B]

Yeah. When you're older.

[A]

Right.

[B]

They want you to go from here to here without all that in between.

[A]

Yeah. But it's so important. We have taken the agency away from our kids.

[B]

Yes.

[A]

And we say, tell a trusted adult. Tell a trusted adult. Tell a trusted adult. And yes, if there's harm involved, psychologically, physically, tell someone. I agree. And yet more and more I push people to say, that sounds tough. What do you think you should do? Because we really have to coach and role model for kids. Like you get to handle conflict. Because if you're only handling conflict online, you're not really doing it. And if we're able to do it in person and stand up for ourselves, what a powerhouse. Right? If we can draw boundaries at young ages, then we can hold those boundaries when we get older.

[B]

Absolutely.

[A]

And I think that's the where we need to head in so many ways.

[B]

Yep. Couldn't agree more. And we had, we had a very similar experience with our son in first grade. Just. There was a lot of miscommunication, and there were things that were happening that he was doing and that were being done to him that was not communicated at home. And we chose to keep him in that classroom to teach him. You need to advocate.

[A]

Yeah.

[B]

And you need to advocate appropriately. So we hold the same expectations for both of our kids.

[A]

Yeah.

[B]

It's not easy. We don't always do it well. And we are very honest. We fumble through life with them.

[A]

Yeah.

[B]

So that they can see that their parents don't have this all together either.

[A]

Right, Right. I love that. I, unfortunately, came out of the womb advocating, so I had a permanent desk next to the principal's office in elementary school.

[B]

Okay.

[A]

But that's that 80s ADHD kid personality. So thank you, Nicole, so much for being here with us today. Really appreciate it. So excited to see where your daughter heads, how that continues to grow. All those things are super exciting. And just thank you for all the work you do with families and. And. And take care of them and give them advice and share time listening, because I think that's so important.

[B]

Yeah. Thank you for having this. This really needed and necessary conversation. I appreciate it.

[A]

Yeah. We've. We've recently been approved for Medicaid waivers in certain states, and so for our products and technology. And so we just want to, like, understand families more and understand the needs more so that we can always grow and build on top of what other people have done or what the needs are, so.

[B]

Well, then, on behalf of our community, I'm going to thank you for that. Thank you for taking into consideration where we're at in our perspective, because that's huge.

[A]

Love it. Thank you so much.