Episode 372- Building Your Neurodivergent Parenting Village with Vicki Christensen

You can have a full calendar of friends, family, and appointments and still feel completely alone as a parent. That’s where this conversation lands: the kind of honest, practical talk that helps you breathe again and take the next step.

We’re joined by Vicky Christensen, a special education advocate and the author of Uniquely, Fully Enough. Vicky shares her family’s neurodivergent parenting journey, including raising a son with an extremely rare chromosome disorder and a younger son with ADHD inattentive type and auditory processing challenges. We unpack what it feels like to walk into an IEP meeting surrounded by professionals and realize you need a plan for advocacy, not just hope. We also talk about how finding your village actually happens, from parent groups to local providers to the first person who says “I get it” without judgment.

We dig into visible disability versus invisible disability, why kids can be underestimated at a glance, and what real inclusion looks like for nonspeaking students, including respectful communication and the role of AAC. You’ll also hear concrete guidance on finding credible autism resources without getting lost in the noise, plus what happens after aging out of the school system and how families build meaningful community life and support.

If you found this helpful, subscribe, share it with one parent or educator who needs it, and leave a review so more families can find these stories and tools.

Transcript

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Welcome And Guest Introduction

SPEAKER_00 0:00

Hi, thanks for joining the SG Child show today. I am thrilled to have Vicky Christensen with me. Hopefully it's all pronounced phonetically correct there. Yeah. Exciting syllables or anything where we know. It's it's exciting to talk to, you know, those that are in our community who have the same passions, have the same drive of more important most importantly, sharing with people. And that's what you know you had kind of mentioned that it's so nice to have podcasts. And the I can remember years and years and years not being able to find any information, find any books, find any websites, find any. There was nothing like a podcast back, you know, yet. And right, oh, if we would have known what we, you know, known and what we know now. Oh, isn't that the case? But it's great to have you here. Thank you. Wonderful. Yeah, thank you, Sarah. I'm thanks for having me on your show. I'm happy to be here.

SPEAKER_01 1:00

Well, introduce yourself, let us know a little bit about yourself.

A Rare Diagnosis Changes Everything

SPEAKER_01 1:04

This is a great conversation. Yes. So I'm Vicki Christensen, and yes, you did pronounce it correctly. And I am first a parent. I have two boys. They are both neurodivergent. My son Luke is 21. He was born with an extremely rare chromosome disorder. We have only found one other person in the world who has the same chromosomes as Luke. And he has a brother, Everett, who's 17, and he has ADHD, the inattentive type, some issues with auditory processing. So that was all discovered a little later in life. But Luke was identified at birth, so, or just after birth. So I am a special education advocate. I have been for over 15 years, and I like to say I became an advocate by necessity. Um I sat in my first IEP meeting, and I just remember thinking all 10 people here seem very nice. I sure hope they know what they're doing and they're going to do the right thing for my son. And that's not what you want to think when you're in an IEP meeting. And lastly, I'm an author. I this year I had a book published uniquely, fully enough, the neurodivergent parenting journey, a memoir, and a handbook.

SPEAKER_00 2:16

Yes. Wonderful, wonderful. I'm so glad to share that with my my listeners and everyone. So excited to check it out. Wow. It really is this kind of creation from your own journey that sometimes you realize those resources and those communities and those just everyday, you know, hold my hand through this and tell me what to do next aren't really there. And it takes so much courage sometimes, and sometimes getting to and like you said, you you were able to get some information at the beginning, but still you didn't have it for both. And then there's this air of like kind of whoa, hits you a little bit when you've had different kind of an idea of what's going to happen throughout your life, throughout that individual's life. And that can really like shape what you put your intentions into, what you turn your drive and your passion into, whether it goes one way or the other, right?

Loneliness And Finding Your Village

SPEAKER_00 3:27

It really can too. Because it could take you, you could become depressed and kind of and I hate to see those moms or or dads who feel so isolated, so alone that they don't where can they find resources? What where do they even start? It's the hardest part, isn't it?

SPEAKER_01 3:48

It it is, and just you know, you talk about isolation, and I write about that in my book. I early on, I had a huge network of friends in the San Diego area. I have family that might not have been here, but were very supportive, would fly in if I needed anything. Wow. And yet I felt so alone.

SPEAKER_00 4:09

Yeah.

SPEAKER_01 4:10

And so it's it's not about having these people present, it's about having people who understand your journey, right? Who can provide resources, who are there, who just can say, like, I get it, you don't have to say anything, but I get what you're going through. And it takes time to find to find like what I call your village. And that village is different for everyone.

SPEAKER_00 4:35

It is. And it is so satisfying when you start to engage with that village and community, and you also start to see the reciprocation of those who are feeling the same way and that relatability, and that kind of a oh, finally, a place like we all fit in, like our family, you know, you get our family, we get you. Like it's so refreshing when you can speak with another parent that doesn't ever come from a place of judgment, or you know, even better, has been through that situation and might have an idea of some type of steps they took to make a success or a strength out of a challenge. It's just so important.

SPEAKER_01 5:23

Absolutely. It's it can take a while to find that, but you know, it it's finally you're like, well, I'm not the only mom going through this or that, or do it like there are other people, right, who I can relate to. Different issues. Maybe, you know, a lot of my friends early on, they were more concerned with, you know, what playgroup they're gonna be part of, or you know, who's gonna take our family photo? And I'm like, how am I gonna manage, you know, my job and getting to speech, OT, and physical therapy? My son started when he was four weeks old, all of those therapies. So I, you know, I'm like, oh my gosh, will he ever walk? Will he ever talk? Will he ever smile? I have all these what ifs, like that is not what I had expected to be thinking about in those early days, early years, really.

SPEAKER_00 6:17

Absolutely, and then you just harness this power of everyday life that happens, and it becomes the let's, you know, the drier setting normal, if you will, for yourself. It literally, and and other people couldn't comprehend or even fathom how you can go throughout your day and they don't see it through a lens of it's our daily life. Like this is Tuesday, this is what happens on Tuesday, you know. And it's so as you know, I always often say, life is always happening. A dog or a child may show up at any time, and we just punches, like this is and maybe I kind of love that about the sense that I think autism not only is it more prevalently known and the at least preferred across everything now more than ever before. People might not understand it, but it gives us a window to start building and to start really un helping people understand just neurodivergence in general and kind of you know, around that.

SPEAKER_01 7:24

So there's so much more awareness today. I even than when Luke was young, 20 years ago, just around neurodivergence and acceptance and inclusion and thank goodness and early intervention, really. Yeah, we've come a long way.

Visible Disability And Being Underestimated

SPEAKER_00 7:42

And if you don't mind me asking, is the the chromosomal difference and and such, so are is it physically noticeable or is it an invisible disability? Just that's uh a really good question.

SPEAKER_01 7:57

So Luke, he has a little extra piece of his 14th chromosome, and it is noticeable. So when you see Luke, you can absolutely tell that he has, you know, if anyone is familiar with like Down syndrome or other chromosome disorders, I'd say he looks more, you know, he has he's he's small, he's almost 22, he's 5'1, he's 99 pounds, can't quite hit those triple digits. Um and you know, and I've talked to parents about this. It's it's a blessing and a curse, right?

SPEAKER_00 8:30

Absolutely.

SPEAKER_01 8:31

Because I feel that when people see Luke, there is immediately with a lot of people a sense of compassion and understanding because he clearly has a disability, unlike autism, right? Where sometimes it it is the invisible disability. And so, but but also I feel that he is very often underestimated, yes, for the same reason. So it's you know, I think like anyone, it takes education, it takes, you know, from parents, just informing anyone who's around your child or working with your child, making sure they really understand all their strengths, what they need help with, keeping them safe. Because as we know, you you can't judge a book by its cover. It's no, it's they're so complex. Our children are so complex.

Inclusion For Nonspeaking Students

SPEAKER_00 9:24

Yeah, absolutely. You know, I was just kind of a tie-along into what you're saying right there, just over this last week. And I was telling you about the summit that I was holding, and one of our incredible, amazing speakers, non-speaker, Elizabeth Bonker, who presented her video for the non-speaking community. Yeah, oh dope. Like we re-watched it over this last weekend, and my daughter and her boyfriend watched it. I don't think he blinked once. Yeah, and it just like moved me. Like, this kid's gonna like be one of those kids that helps others, you know, and it's like this sense of sorry, I don't know where the hell came from. Just this thank goodness, right? That we have these incredible advocates, especially self-advocates, yes, are being able to say, I am human, give me dignity, yes, let me live in this independent state that I deserve and have every right to be, with of course the supports that I need, if that's what's needed. And when in our history of time did we decide that that wasn't a good idea to have for people and we couldn't expect them that way. No, I think that you know, evolution, whatever you may want to call it, hopefully our society is evolving in a way that we'll have more compassion. I do see it happening, I see more compassion, more diverse like acceptance and things. So let's hope absolutely.

SPEAKER_01 11:04

And you talk about it's your your daughter's boyfriend who was watching it. I mean that those, you know, because my son Luke just aged out, but he even did his adult transition program at our local high school. So he was there for seven years. And the student body is they were um, they are amazing. And it's but it's awareness. It's you know, from we work really hard in our school district to start educating in the elementary years, compassion days, teaching the families. It's okay to ask questions. There's no wrong question, right? Because a lot of what I have found, I'll use school as an example when you know there's not that inclusion, there's not students, they they avoid, it's because they don't know what to say and they haven't been taught to ask, give a high five, give a fist bump, something. If they're wearing a Lakers jersey, say, hey, I'm a fan of that team too. And then you mentioned like students who are non-speakers or non-verbal. That doesn't mean they don't have anything to say, right? So talk to them, communicate them. Because I always I I preach this. They understand what you're saying. Yes, and if they don't have a response, it's it's okay. They do have a response. Look at their face light up. Maybe they have a device, an AAC device where they could respond. They might have an aide with them, talk to them, you know, treat, treat them with dignity, include them. And I've seen such I I I work all around Southern California with my advocacy and such an increase in just in schools and awareness and compassion. And it it it's a wonderful thing. We still have a long way to go. Absolutely, but we're going in the right direction.

SPEAKER_00 12:55

Yeah, and that's why we're doing this and having this conversation today. And you know, maybe Vicky and I wouldn't have been able to meet any other way than to be here together today. In after you know, the part in our journey that we're at. I have a 16-year-old that is semi-verbal and you know, more I would say profoundly autistic. And you know, he has daily support needs, he has 24 hours, and my daughter is although you know, um also aud, those needs are much different, and the attendance and the the idea that we can just see one another for the qualities and the you know perspectives or the help that we all need because I think you had mentioned, or you know what it wasn't, it was that's so funny. My mom just called me and she said I'm sorry, I'm even saying all of this help. Anyways, someone in our family had needed help because they were like you know, a distant relative that had an autistic individual that they weren't sure about resources in their community. Of course. Are you kidding? Call me, call me, call me, right? A hundred percent. But it's in that moment where of course they I'm like you know, one of their family members. There's a million ways that I could have connected, but then they don't know how to ask for that help, and that's such it's such a hard part to get across to people, and that it's not a burden, it's it's an honor, at least for me, and I'm sure for you as well.

SPEAKER_01 14:43

And honored absolutely to always always willing to talk to anyone who wants to learn, who wants to know about resources. But you know, myself, before I had Luke, and even you know, while I have Luke, I like to get things done on my own. I'm not a person that naturally asks for help. I'd rather just do it. That's how I'm wired. So we do all parents, we have to learn how to ask, how to connect. And I believe once you start doing that and you form these connections, you realize, okay, this is how this is how we have to live now. I can't do this all myself. It's too much. And if it's not today, it will be at some point, right?

SPEAKER_00 15:25

Yeah, yeah, exactly. And there's so many great ways to go about, you know, creating these types of connections, groups, support groups, of course, social media, you know, can be so helpful in that sense to find people in your area with you know, out of your area, if that's what you're more interested in finding. If you want to look for a global community that you be a part of, it is so possible, and there are so many resources. Now, if you have too much information, possibly do right. So, maybe how do you find the right resources, the safest resources?

Finding Credible Local Resources

SPEAKER_00 16:07

What would you say to that?

SPEAKER_01 16:10

Well, I wouldn't start with just a broad Google search. I really would recommend starting locally and talk to your school district. If your child is in therapy, talk to your therapist, right? P T O T speech, mental health, whoever that might be. Ask. Ask for resources, other parents at school. Early on, I can't tell you how much I learned and what I'm not doing, what I should be doing from other parents. And we all share. We started a parent group. There are local groups. If you need to, and and every at some point, I mean, my son, we've only found one other person in the world. So, you know, regarding his disorder, I I had to think. Um, so the other family is in New Zealand, by the way.

SPEAKER_00 16:57

Wow.

SPEAKER_01 16:58

Well, I guess you guys haven't got together, maybe. Hey, we're friends now. I love each other. It's wonderful. Amazing. But but make sure you're sticking with credible organizations, right? Like the Autism Society or United Cerebral Palsy, Best Buddy, Special Olympics. Start there, but ask, ask for resources, ask for referrals. You will find them, definitely. Yeah.

SPEAKER_00 17:24

You know, doing something new in my area here in Salt Lake City. A few months ago, I decided to ask autism providers here if they wanted to get together and have like local networking and meetup. We've had a couple meetings so far, and I'm gonna tell you, Vicky. Oh my heart, it's so beautiful to see that these companies want to come together. These, you know, and it was a mixture of all types of therapists, you know, also psychologists, also advocates themselves. And so many people came forward and said, We'll volunteer our space for another meeting. We'd love to do this again, you know. We'd and now we have this growing group of a referral-based, more like service system. It makes me so happy that it that could be happening here because we deserve it as families. We deserve for all of the providers that come into our homes or that we visit to give us as many options as they know available and safe as they can, you know, vet to before.

SPEAKER_01 18:31

Absolutely.

SPEAKER_00 18:32

And this is providing just that like stream of information and things to come into.

SPEAKER_01 18:38

So I'm just and Sarah, I'm I'm so happy for you and your community. You have that, and we have something very we have groups, multiple groups in the San Diego area. And I would say I'd imagine most, you know, decent-sized cities have resources, have parent groups. We have the Department of Developmental Services in California. So if you live in California, reach out to them, they can refer you to a group in your area, reach out to you know the autism society, and they can refer you to a group in your area. And guess what? Through the connections you meet there, you will meet some of your people. And maybe that leads to a friendship, maybe that leads to finding another parent group through, you know, but it just it's a good place to start to find something local that you can attend or or not, you know. Now today there's Zoom meetings virtual like we're doing today. That's the beauty of it, right? So maybe there's a group that is happening somewhere across the country. You can still attend virtually most of these, most of these meetings. So they're very accessible. But it it's in my book, I write, like you do have to find your village, your villages, right? I mean, we all have multiple villages. It's so important to find those and to it's it's survival, I believe.

SPEAKER_00 20:00

Oh

Writing The Book Parents Needed

SPEAKER_00 20:01

no, and that was perfect segue because I was just gonna say, let's talk about the book. You know, let us know like where did that yearning start to write the book? How did it become what it is? And tell tell us about that a little bit. Yeah, so I'd love to let me. I'm I just want to is there a website I can put up where everybody can find it.

SPEAKER_01 20:21

Oh, yeah, you can order it. I'll just give you my um advocacy website. It's blueglassesadvocacy.com. And I'll start by saying the book because you you mentioned something earlier about why can't we just all be who we're meant to be? And the title of my book, it it took a lot of brainstorming to come up with the title, but uniquely fully enough, it's it just encaptures like I think about my son, I think about these families I work with, my son's friends, like uniquely, fully is that right enough. Yeah, classes advocacy, yes.

SPEAKER_00 21:04

I don't know what happened there. My brain was just the ecstasy and I don't know what happened. Okay, now you get it uniquely fully enough. I uniquely fully enough.

SPEAKER_01 21:15

So, but it's also for the parents and the caregivers, you're also uniquely fully enough, right? We all are, and that's where we start. But I never I never aspired to write a book. I have been for the past, I mean, 15 plus years advocating, talking to parents, multiple parents every day, you know, for the past 20 some years with my son reaching out and talking, learning from parents. And I find I found myself sharing a lot of the same stories, sharing a lot of the same tips and advice and what worked for our family. And I finally thought I should just put this all down in a book. And so I just One day I just started writing and the book it is it's real, it's raw, it's I don't sugarcoat anything, it's very authentic about our experience. So it's part memoir. I start with before Luke and I go to almost today. So different as different times in our life. And I sorry, I just had a I I share it's it's the book that I wish somebody would have given me, yeah, early in the early days, right? So I write about our story, but I don't stop there, right? So I share, and as you can imagine, when you're raiding it raising a child who is neurodivergent, there's a lot of stories, and there's a lot of funny stories that I could I could look back now and and just kind of laugh at. But I share stories in each chapter, but then I end each chapter with what I call a love lesson from a mom. And so, what are the tips? What wisdom did I take from this time in our lives? What do I wish I knew then? And what do I want to share with other parents going through this? So, you know, I say take what helps, leave what doesn't. You know your child, your family best. But if there's a few things you can pull from my book that didn't help, wonderful. So I wrote it as a resource. It's it's it's a pretty light, yeah. I guess it's a light read, but I guess it's also in some aspects a heavy read. Because, you know, parents, the parents who need this most are probably, you know, it it's a very emotional journey, a very rewarding journey. As you know, it's um every day feels a little bit different, a little bit like a roller coaster. But you know, I start with the very early days, talk about getting that diagnosis through school, through appointments, through therapies, through middle school, high school, adult transition. Our son has been conserved, so I speak about that process, um, conservatorship, and then aging out of the school system, and then all of a sudden you're an adult and community life. So I try to I try to hit every aspect that we've been through.

SPEAKER_00 24:18

Beautiful. I mean, and it's so so much that unless you read about it or have lived or living that experience right now, can really understand how much beauty can come out of it. And I think it really comes down to when we as parents can have the perspective that like for me personally, maybe things didn't, you know, weren't amazing in my childhood, but things have sure turned around for me in my adulthood, and I things I could have never imagined happening. And why should we doubt a child's experience that they won't experience these incredible things that we never imagined could happen for ourselves? Right. I mean it's so ironic that we would, you know, no, they can't do that, but yet we have yet overcome or maybe had miracles, if you will, happen to us among many times in our lives, and so I think that contrast and really looking at the whole experience and saying, why can't it be like rather than it won't or it can't, you know, and those types of things.

SPEAKER_01 25:37

So

Reinventing Life After Aging Out

SPEAKER_01 25:38

absolutely, and it it makes me think I write a chapter on reinventing myself because before Luke was born, I thought I had everything mapped out. I was in the pharmaceutical field. Oh, I was like, I've got this down, I'm gonna do this, this, and this. It's gonna be a great balance. And then wow, okay, wait.

SPEAKER_00 25:58

Therapy? This was part of the plan.

SPEAKER_01 26:03

Eventually, I had to give that career up because I literally could not get Luke to every therapy and appointment he had to be. But what that taught me, and it takes time, right? You have to go through it, is that I can do anything I set my mind to. I can reinvent myself over and over again if I need to. My children, my 17-year-old, who's extremely intelligent but has a learning disability and struggles in school with an attention, can do anything he wants in life. And I tell him that all the time. My 21-year-old who has a chromosome disorder and he's affected physically and intellectually. Guess what? We got to figure out what your interests are and what your passions are. And you're gonna do those two. It might look different, you may need a lot more support, but you're gonna do it, and you're gonna have a meaningful life and employment and everything else that you want out of life. So, yes, we we can do, we can do whatever we want and whatever we set our minds to. Is it easy? No, never, no, it takes a lot of work, right? Yeah, but but I embrace it, right? I I write in my book, I used to want easy, I don't want easy anymore.

SPEAKER_00 27:22

That's beautiful.

SPEAKER_01 27:23

I I don't think I I can't have easy, but I also don't want it. Yeah, because what what I do every day with my son, it's this past year is past six months, you know, just aging out of the school system and having to build a life for him outside of school has been a lot of work. But now that I see him slowly kind of like transitioning into that community life and people in the community embracing him and supporting him, it's it's beautiful, it is, and I see he's happy, so it's worth all the work we put

Where To Get The Book

SPEAKER_01 27:56

into it. Isn't that the truth?

SPEAKER_00 27:57

Yeah, oh, you've been such an incredible guest today. I just I love your passion and your spirit and everything about you. And I feel the same, Sarah.

SPEAKER_01 28:08

As soon as I we got on this call, I'm like, oh, this is gonna be a great conversation. I can tell you, first off your energy as well.

SPEAKER_00 28:14

Put the same dress on anyone to show me. Oh, absolutely. No, I really hope that we can stay in touch and you know, bounce back and forth on some ideas and and you know, just chat about more community things. And those listeners and viewers, please, please, please go visit blueglassesadvocacy.com and go look for your book uniquely, fully enough. Make sure that you get a copy for yourself, your friends, loved ones that you think might just, you know, have so much to take from this. Buy one and give it out to someone in the community. I dare you to.

SPEAKER_01 28:56

Um thank you. Share it. Yes, you know, that's what I tell people. Read it, pass it on. I just um it truly is meant to be a resource for families.

SPEAKER_00 29:06

I love that so much. Thank you so much for your time today. Um, and just you know, volunteering to come and and share with us and really just be present for all of my listeners and and everything. We truly appreciate it.

SPEAKER_01 29:21

Absolutely happy to be a resource and uh thanks for having me on your show, Sarah. Always enjoy speaking with like minded people, so I appreciate it.

SPEAKER_00 29:29

Yeah, we'll definitely be staying in touch. Thanks. Yes.

SPEAKER_01 29:32

All right, bye bye.