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Ep 3: Neurodiverse Families and the Many Faces of Isolation

Updated: Jul 10, 2023

Isolation and loneliness are realities for parents raising neurodiverse humans.


We’ve experienced both and know how difficult it can be through the many ages and stages of our kids’ lives.


So much of our parenting journeys have involved letting go of the expectations of others and of ourselves. It can be freeing, eventually, but what it takes to get there can be exhausting. If you’re feeling isolated, we want you to know that you’re not alone (see what we did there?) and that there are ways to get past it.


In today’s episode, we talk all about isolation and loneliness and their impact on neurodiverse families. We go into the data behind it, share stories related to feelings of isolation in many different areas of our lives, and offer strategies for how we’ve coped over the years.



In this episode, you’ll learn...

  • [01:31] Some Rylan-isms and Graham-isms to start off the show

  • [05:02] The data on isolation and its impact on neurodiverse families

  • [08:52] Kristen’s experience of isolation in raising triplets

  • [16:10] How Gwen’s isolation began during infertility

  • [19:30] What isolation looked like for us during our children’s early education years

  • [26:36] How we spent so many years trying to be “typical” families when we’re anything but

  • [31:14] The isolation we felt from our religious communities

  • [35:53] The difference between isolation and loneliness and how we’ve learned to cope and find support

  • [43:27] The Last Word from one of our kids and their thoughts on isolation




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


Links mentioned in this episode…

Some things that have helped our isolation and loneliness:

Reading recommendations for this episode from Marvelous Me books:






(click through for more photos)




Transcript:

Gwen:

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

Kristen:

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

Gwen:

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

Kristen:

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

Gwen:

Hi friends. And hi to you.

Kristen:

Hi to you, Gwen.

Gwen:

We're back.

Kristen:

It's episode three, feeling really good about it. And this-

Gwen:

We're Feeling better, right?

Kristen:

We're feeling better. We're trying-

Gwen:

We're feeling better.

Kristen:

...trying to hit our stride here with this podcasting thing. But this episode is a good one. It's about isolation and that it's a real thing. And the irony of not being alone in isolation because we're all experiencing it that have these neurodiverse amazing kids.

Gwen:

True. And maybe the difference between isolation and loneliness. We'll talk about both because they're not necessarily the same thing. But before we do that, we don't want to disappoint you and not let our kids lead off our episode. So we bring you our Rylanisms and our Grahamisms. Do you have one that you want to lead with for our friend Graham?

Kristen:

I do. This is an old favorite of mine. Graham likes to make a lot of observations. It's one of the things I love most about him, is that he makes really interesting and unexpected observations. Case in point, he said to me once, "Have you noticed that magpies are one of those common neighborhood birds? Do you like that?" So he's always very interested in knowing whether I like a thing or not.

Gwen:

Magpies.

Kristen:

Magpies.

Gwen:

They're not a common bird where I live, so I appreciate that he sees a lot of those. That was the name of my airstream that I owned for a while.

Kristen:

Yes, it was.

Gwen:

Miss Magpie. Okay. One of my favorites since we're going back is we had just moved to Michigan. That was about four years ago. And of course, the kids are in new schools, and I had not yet met any of the kids in his class, but it was his birthday very quickly after we moved here. So he started the year kind of midstream. And so we were going to invite three or four of these new friends of his to have pizza and go to Dave & Buster's, one of his favorite places, and the vein of my existence. I wear sound blocking headphones when I at Dave & Buster's. So we got to the pizza place and I had said, "Rylan, I need to know who are these friends that you invited." He said, "Well, I invited Jack, and I invited David, and then I invited Maddie." I said, okay, "What does Maddie look like? Have I met Maddie?"

He goes, "Well, she does have special abilities." And I was like, "Oh, fantastic." And the school that he started at had so many kids with different abilities. It was a beautiful thing. I said, "Well, what is her special a ability?" Because that's what we call our special needs and our family, our special abilities. That's just the Vogelzang way. He goes, "Well, mom, she wears glasses." I was like, "Oh, right. Of course, that is her special ability, vision impaired." So we get to the restaurant. He doesn't say anything about the other two. Well, it turns out his friend David also has autism, but of course he wouldn't notice that. Right? And Jack comes, sweetest kid, and then Maddie comes in a wheelchair with down syndrome, Maddie. And glasses. So I look at him and I'm like, "You just noticed the glasses?"

Kristen:

Oh my God.

Gwen:

And I think that is one of my favorite stories about him because it is so on point.

Kristen:

So on point.

Gwen:

He doesn't notice if you have down syndrome, nor does he care, nor will he alter his expectations for you in the same breath. And he doesn't noticed that she was in a wheelchair with a broken leg. No, just the vision impairment, slight vision impairment. Oh, anyway, that's one of my favorite [inaudible 00:04:54]-

Kristen:

Perfection

Gwen:

...time.

Kristen:

Total perfection.

Gwen:

All right. Now that the fund's over. Isolation. All right, data ahead, what do you want to share with us as far as the data around isolation?

Kristen:

All right, so there's a few things that we know about how raising our neurodiverse families can really impact us. Some of it is from a mental health perspective, some of it is economic impacts, but I think some of this research really points to the reasons why we isolate or why we feel isolated. One of the first things to know is that children with autism are significantly less likely to attend regular community activities, school or spiritual services. Parents are also more likely to have a host of concerns around bullying, challenges with learning and just kind of overall achievement. So we're stressing about just trying to be a part of our communities in the ways that other families do without thinking. Often, one of us in a family unit co-parent or co-caregiver is not able to work because we have to stay home and kind of project manage the intervention. So not only do we have the loss of a parent's income, we also have specialty schools, specialty activities, equipment, therapies, insurance, copays. So these costs of all of these things can be really limiting when one of the parents can't work.

Gwen:

Absolutely. And we both can speak into that, right? Because you stopped working when you had, well, you had triplets, but still you stopped working.

Kristen:

I didn't work.

Gwen:

And were managing a circus full of providers in and out of your home.

Kristen:

The literal circus of rotating teams who I'm sure went to the bar immediately from my home after trying to manage me and my family.

Gwen:

While you were in the closet drinking.

Kristen:

While I was trying to hide or unload the dishwasher while I should be watching the intervention so that I can repeat it when they're gone. But yeah, it's tough stuff. We know that families are at an increased risk for marital discord. So often co-parents are not in the same place in terms of their grief or their coping or their belief system around disability. So that can cause a ton of stress and isolation even within your own marriage within that nuclear family.

Gwen:

And we have an episode coming up very soon on just that, co-parenting. We may or may not invite our co-parentors on with us. We'll determine that.

Kristen:

I think it would be fun to hear from them, but-

Gwen:

I do too. [inaudible 00:07:37]

Kristen:

We might have to have a glass of wine before we embark on that adventure.

Gwen:

Lots of therapy.

Kristen:

Yeah, lots of therapy. But all of these challenges that this research has shown puts family members at an increased risk for stress and for negative mental health outcomes like anxiety and depression. And ironically, the most important indicator of a positive mental health outcome for parents is social support. So peer support, social support, even a perceived social support. So one person can make the difference in feeling supported and in your mental health outcome. Which is why we do this together and why we want to share it with others, is because it really does make that big of a difference. On that note, given that background around the challenges that come with our mental health, with our economic and social challenges, we're going to talk a little bit about how that leads to isolation and what that might look like for us

Gwen:

In different phases.

Kristen:

Yeah.

Gwen:

Because that isolation has kind of cycles, at least it has for us. And your isolation ties directly into just the wham bam start of triplets right off the bat.

Kristen:

Yeah, for sure.

Gwen:

So Kristen's isolation early on looked very different from my isolation early on, having one child that didn't present as autistic as a baby. Well, I mean he did.

Kristen:

Now that we look back on it.

Gwen:

Now that we look back, of course he did in many ways. But we certainly didn't see it and Kristen didn't see that right off the bat, but it became clear pretty quickly into your journey. Do you want to chat a little bit about the isolation that started kind of past that concept of raising three babies at the same time?

Kristen:

I think it's important to know about me that I have a history of anxiety. I would rather have an operation than be the center of attention or talk in front of a room full of people. Unlike my friend Gwen, it really takes a lot for me to feel comfy talking to a lot of people. And having triplets is not a fly under the radar kind of situation. It is high profile-

Gwen:

I don't mean to laugh, but I do

Kristen:

For reals. People rolling down their window and their cars going by asking me if I'm breastfeeding these three babies. People asking me the most absurd things.

Gwen:

Wait, tell them about the lady at the park.

Kristen:

Oh my gosh, I had a lady come up to me. I'm in the park with my toddlers. I'm trying zone defense, right? Because there's not a fence around the entire playground. So I am in zone defense trying to keep them from running into the street. Nobody has language, just starting to figure out something's not right. And she comes up to me and says, real loud, "Did you have artificial insemination for that?"

Gwen:

[inaudible 00:10:41]

Kristen:

I said, "Excuse me." She said, "Did you have artificial insemination?" I said, "Are you asking me if my husband put his penis in my vagina? Because that is literally what you're asking me right now in front of my babies."

Gwen:

Then of course, you become the source of like, "Oh, why would you say such a thing?"

Kristen:

She was horrified. She was like, "Oh, no, of course I'm not asking that." I'm like-

Gwen:

But yes you are.

Kristen:

Yeah, "But yeah, you are. So I don't even know your name. Thanks for stopping by."

Gwen:

Right.

Kristen:

So I felt a bit like a freak show. I felt really insecure and just self-conscious about the whole experience. And so that was isolating, right? I couldn't go anywhere for any length of time by myself with three babies. It was very labor intensive. And then I think when they started missing milestones and having challenges and then getting diagnoses and then having teams of people doing intervention in huge teams coming to our home, because there's three of them, I started to feel like, "Well, first of all, I'm having an out of body experience and I don't know if I can do this. I legit don't know if I can do this." And I've never had that experience in my life before where I felt like I was on my knees thinking, "I literally don't know how I can go on and do this. I'm not built for this. Whose idea was this?"

Gwen:

Nobody is.

Kristen:

Nobody is. Supposed to have a litter of children at the same time. And then just the shame and the guilt and the fear of finding out that they have these differences and that they need a lot of support, and not knowing what that outcome was going to be. I just didn't know who to talk to, and I felt like I had to be really strong and really calm. So that's one of the phases in my life where I developed this strategy of "I am just going to look like I have my together, and it's going to be calm on the outside, show on the inside." And I-

Gwen:

And she's still that way,

Kristen:

And I am still that way. But I think that's where I started really learning just stuff my feelings down, which is not super helpful, because then I end up eating and drinking my feelings, as I'm sure some people could relate to. But those early years, I really felt like even when I tried to reach out to neighborhood friends or even friends from my life before children, I just didn't know how to even articulate my fear or my sorrow or my hopes. I could barely process the experience for myself and then how to reach out to other people to make them feel included in the experience. I just didn't know how to do it, and I didn't have the energy to do it. So I ended up isolating myself. It wasn't so much that people didn't want to be a part of it. They didn't know how, and I didn't know how to help them.

Gwen:

Sure. And they didn't understand it.

Kristen:

No.

Gwen:

And it's hard to be around peers when that's all you're thinking about is this traumatic and overwhelming life you're living and they don't understand that. So it's almost not worth trying to socially engage when that's all you want to talk about is how overwhelmed you are.

Kristen:

Yeah. Or what therapy's working or what goals you're working on. Or I remember one time when the kids were, I don't know, probably early elementary age, and I'm at the park with my behavior therapist running around after the three kids with a visual schedule and Graham's big stuffed turtle and trying to sign to him to take a break before he literally bites a kid's face off-

Gwen:

Or yours.

Kristen:

And then the mom is screaming at me because my kid is biting hers or doing something totally inappropriate. And I'm sweating and trying to move the pecks around on the visual schedule and trying to make sure that Hayden isn't wandering off and stemming on this fence while Graham is biting somebody. And Cora is just standing there crying because she doesn't know how to play with the play equipment. And then there's a group of moms right over there, they just got back from yoga and they're drinking Starbucks, and they're talking about their kids going to some freaking, I don't even know what, some-

Gwen:

Birthday party

Kristen:

Or some fucking gymnastics for two year olds, I don't know. But I might as well have been from Mars, that's how different I felt. And I couldn't think about it too much because I would hate them and I didn't want to do that. Right?

Gwen:

Yeah.

Kristen:

I would just have to say, "I can't with you people over there because-

Gwen:

"You're not my people."

Kristen:

"You are not my people." And-

Gwen:

"You didn't do anything wrong, but you're not my people."

Kristen:

Right. "God bless you and move along please, with your yoga pants and your Starbucks. Move along."

Gwen:

And that's why you never left your house again. The end

Kristen:

The end.

Gwen:

The end. Our isolation at that age did not look like isolation. I think our isolation started with infertility, which probably is a part of your story. It just is so menial in comparison to your outcome that maybe you don't even think about it.

Kristen:

Yeah. It might have been a bigger deal had the rest ensued. Yeah.

Gwen:

The infertility piece was very isolating. We were babies married at 22. And for six or seven years, tried and tried and did all the fertility there is to do, and none of our friends were experiencing that, and they just started getting pregnant one after the other. And I was the only one navigating that infertility path. So we're talking about, if you haven't lived it, you can't understand it. And I learned at that point how to assume positive intention and the fact that nobody really asked about how we were doing was because they just didn't know what to say. And so a lot of the times nobody said anything, which is where that isolation comes in. Because we're just not taught how to deal with hard situations. And so nobody did. So that was really isolating. But then once we brought Rylan home, isolation eased for a hot minute because we looked like any other family. So at that point, nobody knew that he was brought to us through adoption, we didn't know he had any neurodiversity, but boy did he, right? He sure did.

Kristen:

He sure did. He sure did.

Gwen:

He sure did. I mean, grad school, I was writing a paper today, and I was telling about the time where Rylan was like 11 months and most babies are crawling, right? Am I remembering correctly that at 11 months we crawl?

Kristen:

Yeah, it's pretty safe. It's pretty safe assumption.

Gwen:

Well, Rylan would just lay on his belly with his arms out straight like Superman and his feet like a posterior Superman move, and he would open and shut his hands and his toes, open, shut, open, shut, and just grunt. And he never crawled. He just laid there like he was trying to get to Jupiter, but just couldn't get that ignition lit under him and would just open and close his hands and his feet. Well, there was some serious sensory stuff going on at that point, but we just thought, "Oh, he is so quirky. Look how cute." And I have so many... I'll put a picture on our show notes of this exact pose because we thought it was the best. We would just say, "Oh, I hope he's not doing that open shut motion when he starts dating. That's going to be really trouble."

Reagan:

Hey, this is Reagan, Gwen's favorite daughter. When my mom isn't podcasting, she's obsessing over children's books. Seriously, she reads like 50 each week and drags me into libraries constantly. A couple of years ago, she opened a diverse and inclusive children's bookstore called Marvelous Me Book because she wanted a space where people could find really beautiful and inclusive titles that allow all readers to feel seen. It's pretty cool how many lists she's offered about things like belonging, different cultures, ways to be family, the earth, and lots more. What I like most is that every book she sells shows and celebrates people of all different walks of life. Check it out next time you want to order a book, visit marvelousmebook.com. You cannot say the name without complimenting yourself. Go ahead, try it.

Gwen:

So the isolation kind of waned during that time until kindergarten. And then all the shit hit the fan. So maybe we can talk about what that starts to look like in those early education years, because you had three trying to go to school meant for typically functioning students. I only had one, but it felt like I had eight.

Kristen:

Yeah.

Gwen:

Kindergarten was really when we were told, I should stress, that something was unquote wrong, and we started really believing it.

Kristen:

Yeah, it happened a little bit earlier for me. I think by preschool, everyone had a diagnosis of autism. So we went to an integrated preschool, which had pretty strong special education support pushed into the classroom. But even with that, I mean, I remember trying to pick the kids up and I'd be standing in the hallway and they'd be screaming and crying. I'd have one lying on the floor, one booking it, and the other one just hanging on me, all of them crying. And I would start crying and I would just-

Gwen:

What else are you to do?

Kristen:

Yeah, because transitions were just so hard. And then people would take pity on me and help me get them into the car. And then the whole way home, Hayden would be so anxious that he would just ask me questions about animals the entire way home, not breathing, just one question after the other. I finally had to print a little PEC, which is picture exchange communication system, for those of you Thank you. Don't who are not in the know.

Gwen:

I didn't know what a PEC was, you all. Just in case you're like, "Oh, should I know that?" Nope.

Kristen:

Yeah. Basically just a picture that they can point to help them communicate. But my picture had a question mark with a big "No" circle through it. So I would just hold it up behind my head.

Gwen:

No questions.

Kristen:

No questions. I'm not taking questions at the moment. Thank you very much.

Gwen:

Fantastic. I've never heard that story.

Kristen:

Oh, I think I should have that at parties, because I get overwhelmed pretty quickly socially. I'm much more of an introvert, and so I think I should just wear that around my neck and flip it over.

Gwen:

I think that's a good idea. I think that, so I've worn necklaces like that just for parenting reminders. So I just need to have that at the ready without the visual, the words just start to become the peanuts teacher in Charlie Brown, [inaudible 00:22:30] they don't hear it anymore. But if there was an image, he would be like, "Oh, well, why didn't you say so?"

Kristen:

Right.

Gwen:

So I wore necklaces with laminated cards that I just hole punched, and that was effective. Or if I sang the answer, did you ever sang your answers? That worked really well. Its like just a instead of "No, you may not." If I was like, "No, you may not." It worked. It worked.

Kristen:

Because then he was probably because he ran from you because you were so cringey.

Gwen:

No, no. He thought it was amazing. Thank you very much. We digress.

Kristen:

Oh my gosh. Yes, we do.

Gwen:

So kendy is when we started to have teachers like, oh yeah, this isn't working. I've never had a student like this. We'll have an episode on all the things that you should never say to us. That is one. Maybe my top one. I've never had a student like this.

Kristen:

I think we should create a top 10 list actually, of the things not to say.

Gwen:

That was the first one, but he was in kindergarten, so I believed it.

Kristen:

Yeah.

Gwen:

And that's when our life kind of went into a tailspin of, "Fix the kid, fix the kid. We've got to fix the kid."

Kristen:

Boy, did we stay there for a while?

Gwen:

Oh, so long. And our hope is that you will not stay there as long as we did, because we can now tell you don't do it. We had so many friendships, family friendships at that point. And then once all these things became so crystal clear out of the blue in hindsight, that we slowly realized that these social engagements just really didn't work for him. And so we would rotate. Tim would go for an hour, come home, I would go for an hour, bring Reagan, because Reagan could participate very actively in most social engagements, but Rylan could not. And we weren't actually enjoying ourselves because we were just managing behaviors and reactions. So the isolation definitely started growing and ramping up around kindergarten. We didn't have any friends who had kids who were just experiencing the world in a noticeably different way. Anybody.

Kristen:

I think that lack of normalization is so powerful in a negative way where that isolation just ramps up when friends that you've had for a long time stop inviting you places. So those friendships that you thought were lifelong friendships start dropping off because people just don't want to invite you because you're an absolute shit show. And you've got all of these rules that you have to follow that nobody else understands. Like, "Please don't put that on his plate." And "No, no, no, it's not time for presence. Can you just wait till we can do a social story about presence? And then can we do it so that he doesn't try and rip the paper off and then maybe rip..."

Gwen:

"Hold on. I didn't put this on the visual schedule." "Yeah. What do you mean there's a clown? Game over."

Kristen:

Well, game over for me if there's a freaking clown, but definitely for one of my kids, game over.

Gwen:

I mean, we would have to lay out, typed out with a photo next to the words, everything that was going to happen while we were gone if we wanted it to succeed even remotely. And then we would check it off. Okay, next is going to be this.

Kristen:

Yeah.

Gwen:

Well, inevitably those things get shifted. "Well, Johnny wants his presence now." "Well, shit."

Kristen:

Yeah, that's not on the schedule.

Gwen:

Because Rylan expected cake and now we're going to have to leave.

Kristen:

Yeah, exactly.

Gwen:

But it took us a long time to give ourselves permission to just not go.

Kristen:

Yeah, for sure.

Gwen:

We just went and we went and we went and we tried and we assumed that this is what we should be doing. This is what he should be doing. He can and should be successful, though we never were. If it was one family in us, we could make that work.

Kristen:

I think that's really key though, Gwen, because part of the isolation comes from trying so hard to be typical when you're not. I mean, it's exhausting for us. I can't even imagine what it feels like for our kids. When I think about our kids are 19, they graduated from high school this time last year. And Graham, we had a party at our house. We had some family fly out. We were having a couple of friends. It wasn't a big party, but Graham did not want to go to the actual graduation. He did not want to walk in graduation. And I think if it had been five years earlier, I would've had a flipping meltdown and I would've made that kid-

Gwen:

Just devastated.

Kristen:

I would've been devastated and I would've figured out how to make him do it. I would've practiced it with him without people there. I would've given him headphones. I would've done all of these accommodations instead, I just said, "Okay, can you put your cap and gown on so we can take pictures and then we'll take some video for you and we'll be back." And he was like, "Great."

Gwen:

Beautiful.

Kristen:

Right? I'm not going to lie, I felt sad about it, but I got over it pretty quick because I didn't feel that pressure to try and make him be doing something that he didn't want to do. And we spent so many years when they were little doing that. And I feel less isolated now that I'm able to. And when people would be like, "Where's Graham?" I'm like "You know what?-

Gwen:

"He's not here."

Kristen:

"He's not here. He didn't want to do graduation. So we're doing a party afterwards." And then moving on, moving right on. And because it was okay with me, it was okay with whoever I told.

Gwen:

Right. And we're setting up different example when we explain these things to our peers. So instead of being the shit show that can't get their act together, we are the "Wow, she's fierce. Maybe I could give my kid permission to not do X, Y, and Z that I know he doesn't want to do because he should."

Because it's not just our kids that have these individual preferences and personalities that might require stepping outside of expected behavior and expected social norms. So I think it sets a really positive and powerful example when we just say, for example, Tim and Reagan just went to Brazil. The four of us had tickets, the four of us were going. And every time I talked to my friend Kristen Kaiser, I would be having an anxiety attack about it. It was not going to be a fun trip for me. I was so stressed. And we inevitably, Rylan and I backed out. And we had to tell everybody in our world that we weren't going anymore because everybody knew we were going to Brazil. It was a big deal going to visit Tim's brother and his family, and they were so excited. And we didn't go. And I am so glad we didn't go. They would not have been worthwhile. And that was a big relief.

Kristen:

Yes. It was a big grief point for you. It took you a couple weeks to get there because you wanted, and Tim really wanted that to happen, that vision of that... We're going to do a whole episode on traveling, by the way. But I think giving yourself permission to not go, you needed a few people in your life to say, "Gwen, you actually don't have to do that." And-

Gwen:

Absolutely. Yeah.

Kristen:

Yeah. And it was such the right thing to do.

Gwen:

It was the right thing to do. You told me that you would get on a plane and block me from entering the gate.

Kristen:

I think I said I would throw myself across your body.

Gwen:

Yes.

Kristen:

That you were not allowed to go.

Gwen:

And I would have appreciated that. It might have been uncomfortable, but I don't know. And that'll be a marital co-parenting topic of conversation too, because that was hard situation for the two of us to navigate together. So we'll get more into that during that co-parenting episode. But anyway, we didn't go. We expected that the family goes on an international trip together. Nope, not us. And that's not the first time we've done that. And it won't be the last. And we will probably buy all four tickets a number of times in the future and cancel two of them because we still need reminders, for sure. And I think another point of isolation that's worth noting, for us came with our religious community at the time. Because we had an assumption that our kids would go to the private Christian school in Denver. And that was just kind of understood.

We both were raised in the same exact situation. Christian families went to Christian schools, my parents were Christian school teachers. It was our plan. And that lasted for six months. Six months. They had no idea what to do with him. They did not have the resources, they did not have the knowledge. They did not know what to tell us other than this isn't working. And we, at that point, pulled out and found our local public school and we became the only family in our church that had a kid going to a big bad public school. And our role in that denomination disintegrated because of isolation. First and foremost, it was isolation. You don't ever want to be the only one in any group of people. And we did not fit anymore.

Kristen:

But I think, gosh, Gwen, this is just such a powerful segue into kind of the last thing before we turn it over to our kids that I wanted to touch on and that you wanted to touch on was kind of our spiritual direction and how that hindered and helped us in this piece of isolation. But I think spiraling out for you with trying to find the right place, I mean, this began a huge spiritual journey for you that ended up being really positive in the end, but very painful to come to recognize that you actually, not just your kids or your family, you no longer fit in that spiritual community that you grew up in.

Gwen:

Right. I would call it a religious community.

Kristen:

Yeah.

Gwen:

And I've learned the difference between the two. Because we absolutely are included in a spiritual community. It just doesn't look like church anymore. And I never would've predicted that. But there are certain situations that just don't work for our kids. An organized church, which for us meant religion didn't work. We had one community in Denver that ish worked. They did the best they could, but ultimately we just left. We left. And I don't regret that now. It was the right thing to do. And we have found totally different spiritual connections outside of organized religion, but it was brutal. It was just a brutal reckoning and incredibly isolating because that's all I knew.

Kristen:

I think for us, we also had a spiritual journey. I was raised Catholic, I'm a recovering Catholic, I would say. Once I became an adult, didn't really subscribe to that belief system anymore. But did try some organized religion, tried a more non-denominational church experience. That was actually the only place that Graham was ever been restrained, was at church. Restrained twice. I went to pick him up from Sunday school and I could hear him screaming down the hall. And went into the classroom to see him being held down by two teachers. And tried to participate online for a little bit and just felt so, I don't know, wounded by that experience and just didn't feel it was a community that I wanted to be a part of. And that was about as progressive of a community as I think I could find.

Gwen:

Yeah.

Kristen:

So ended up, I think... It's funny because when Gwen and I met, we were in really different places spiritually, and I think we've ended up aligning and coming to really more companionable, I guess places in our journey. But I do think it's been important. And I think Gwen, if you want to talk a little bit about the things that have kind of helped you with... Because there's isolation and then there's loneliness. And I think we isolate ourselves, we feel lonely, we are literally isolated sometimes by our community. But what are we doing to combat those feelings? Because really it's our personal experience that we actually have a lot of power and agency over.

Gwen:

Well, I knew I needed community that understood and I didn't have to explain myself. And I'm an organizer. And so in Denver I started an adoption support group at actually the church that was working for us really well at the time. Rylan didn't always go, but we really appreciated and valued the community there. And there was a large community through adoption there. So my husband and I organized an adoption group because if you're an adoptive parent, you understand that there is naturally going to be a lot of neurodiversity and different abilities in the adoption community. A lot of that is due to trauma. We can talk about that in future episodes. And so that community became a lifeline for sure. And that was probably eight years ago that we started that. And I haven't seen those people in five years. But you better believe we talk.

And when we are talking is when we are all feeling isolated, freaked out, and ready to just throw in the towel. So that community for sure has been a lifeline. And then joining your autism parent support group definitely became a lifeline for me, namely because I found you. But I attended a lot of those meetings and it just being face-to-face sharing space with people that you don't have to say a thing, you can just look at and they're like, "I've got you sister, I am right there." Is so important. And that helps the loneliness, definitely. I also created a panic room in my house out of my closet where there is a note on the door that says, "I love you and you are never allowed to step foot in this room." There is a lamp for soft lighting. There is always a wine glass and journals and a yoga mat.

So I can just lay flat in my back or in child's pose and Rylan's hands, sometimes lips will make their way under the door. And I may or not poke him with the colored pencil when he does that. So that space helps. And I say that as if it's a joke. It's not a joke. During the pandemic, I was in there three times a day losing my mind. But the kids knew that I could find my kindness if I went in there. And so they allowed me. And if they sense that I'm losing it, they'll say, "Do you need to go to your panic room?" And I will say, "Indeed I do."

So we are an open book when it comes to mama's panic room. Do you want to share anything? Those are kind of the social things. But then I think it's also really important, like you were mentioning, to focus on self. I've hired a spiritual director and that has taught me how to find joy despite and without anyone or anything else. And that's new for me, but I'm feeling way more connected to myself as I am connected to the larger world around me and this sense of divinity within all of us and within nature. And that's always there. And so I'm learning how to tap into that. And that actually has been extremely life giving.

Kristen:

Yeah, I think I feel the same way, Gwen. And I would add that Gwen and I are both writers, and I know that I didn't write for a lot of years because when I write, I feel the most connected to myself, I feel the most myself. And I wasn't really interested in feeling my feels for a long time because it was just too hard. So I think therapy was huge in helping me navigate and unpack and not stuff a lot of my feelings down and kind of process the experience, this parenting experience.

But then also, I've actually really stepped into creating a writerly life. I'm working on a novel, I have a writer's group. And I think much like nature and some of these spiritual things we're talking about, I think that creative force is something you can tap into anytime. It's always there. And I find incredible comfort and I feel most full and most myself when I'm engaging in writing. So that has been an enormous thing for me. And I think I would recommend for anybody to engage in some of those things that give you joy and make you feel most yourself. It might feel-

Gwen:

In the creative piece, for sure.

Kristen:

Yeah. It might feel selfish at first, but it's actually pretty life giving. And then you can model for your kids how to be a full person.

Gwen:

Yeah. And we all have that creative force within us and it looks very different. It might look like you just go and connect with nature in some way. It might look like art, it might look like music, it might look like dancing, it might look like writing or photography or whatever it is, but it's just signaling different parts of your brain to wake up and you are able to just then step outside of these overwhelming thoughts that we get so locked in. But this is very new that I've been able to do that.

Kristen:

Yeah, we sound-

Gwen:

This is not me saying like, "Huh, listen dummies."

Kristen:

Yeah.

Gwen:

"Go do some art." No, I-

Kristen:

We sound like we really have our together, but we spend a lot of years not doing this.

Gwen:

Correct.

Kristen:

So please don't feel bad about yourself if you're not doing these things. We feel you and we know you. And we are, we're just finding some success in really trying to develop these coping strategies that are better than drinking a lot and eating a lot.

Gwen:

Sure. Not to say we still don't do those things, but in moderation. And definitely, Shit Creek

Kristen:

For sure.

Gwen:

If you haven't Shit Creeked yet, why?

Kristen:

Yeah, do yourself a favor.

Gwen:

What are you doing? Humor and comedy is definitely an outlet.

Kristen:

And Ted Lasso. I would say those two joy giving shows gave me a little perspective.

Gwen:

But just start learning and loving yourself friends. Because you're not going anywhere and we can't say that about other people in our lives. But as long as you're alive, you're not going anywhere. So invest.

Kristen:

Yeah.

Gwen:

I think they've heard enough of us.

Kristen:

I think so too. I think we've [inaudible 00:42:58].

Gwen:

Should we hand it over to our kids?

Kristen:

Let's hand it over.

Gwen:

Okay. Bye friends.

Kristen:

Bye.

Reagan:

We know our moms are amazing, but they don't know everything. We think that you deserve to hear from the real expert. Their kids. Woohoo. We believe in nothing about us without us. So here it is the last word.

Graham:

I definitely think that you guys at some points felt isolated and also unsure of what to do.

Kristen:

For sure.

Graham:

And also, you didn't have much to reference because there's not a lot of people out there.

Kristen:

God, I don't know why you would think that.

Graham:

Right? Yeah.

Kristen:

How do you think dad and I deal with loneliness or isolation? How do you see us dealing?

Graham:

Well, I know that you guys are very close and that's one thing I'm very happy. I got a stable home life and you guys have a lovely marriage. And I feel like that's one of the biggest things that's helped.

Kristen:

For sure, dad is-

Graham:

Because that's one person who's also in the same exact boat.

Kristen:

Yeah. Dad is definitely my ride or die.

Graham:

Yeah, I hope.

Kristen:

I hope so too.

Graham:

I hope so. But also the friends that you guys have made over the years, I feel they're kickass man. They do understand and I feel like a lot of his friends you wouldn't have made if you didn't have these struggles.

Kristen:

So true.

Graham:

But you also, I would be missing out on other things that parents with kids or neurotypical kids that they would experience. It's just a different experience. But with different experiences to come, different people and different friends. So they're still friends and I feel like they understand and that they get having kids like that. And I feel like that's a better friend. But overall, yeah, I do feel I never saw it very much. My parents were pretty good at making, it seemed like everything's all right and that's what made me feel safe and feel good.

Gwen:

Thanks for joining us for this episode of You Do Want To Hug... Right? We'd sure love it. If you'd subscribe to our show in your favorite podcast app, missing an episode would be catastrophic.

Kristen:

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

Gwen:

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



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2 Comments


Unknown member
Jun 06, 2023

The observations that the kids make are so honest and funny at the same time. Thanks for giving us a little insight to how your isolation has affected you. I'm sure there are so many who feel this way.

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Unknown member
May 25, 2023

I didn't realize my daughter had autism until recently now that she's a teen. When she was in kindergarten we got a call about how she tried to stab another student with scissors. I fully understood my daughter in this and moved her to a charter school the next year. That worked until a not so great Gifted and Talented teacher joined the team. We moved houses to get her in a different school district where she has done well in public school thanks to having a larger pool from which to find her people.


Once the pandemic hit, I felt relieved not to go back to church in person because it was causing me a lot of sensory overload.…

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