You Don't Have to Fit In to Belong: Embracing Truth in Parenting
How to find strength and acceptance in radically inclusive parenting with Sonali Vongchusiri.
On the Mindfully Parenting Atypical Kids podcast, I was joined by the insightful Sonali Vongchusiri, a highly-sensitive mom with three deeply-feeling and strong-willed kids. She also happens to be legally blind and have albinism.
With her heartwarming stories and profound revelations, Sonali teaches us that you don't have to fit in to truly belong.
"I think that's also the reason sometimes we as parents may hesitate to share a label. We want our kids to feel like they're the same, because we want them to belong."
-Sonali Vongchusiri
In this episode, we'll discuss the beauty of embracing one's true self, and the power of labels in accessing support and understanding. Sonali shares her journey of accepting her visual impairment, and transforming her internal struggle with albinism into strength.
The compassionate way she and her children embrace their differences fosters a family dynamic rich in confidence, humor, and sensitivity to individual needs.
Her work is dedicated to sharing with parents how it's possible to have fun with high needs kids and to raise them to be kind. Because she gets it - both from being THAT kid, and from having THOSE kids.
We'll also delve into the nuances of disclosing a child's diagnosis, the impact on family dynamics, and the challenges of navigating an ableist society. I talk about my own experience with telling Ocean about his autism diagnosis and the tension it created, both within our family and with friends.
Together we'll engage in a mindful exploration of combating internalized ableism. Prepare to be both moved and empowered as we tackle these deep issues with empathy and understanding.
By the end of the episode, you'll be able to answer these 3 questions:
How has Sonali's journey of embracing her albinism and visual impairment influenced the way she parents and advocates for her neurodivergent children?
How can parents balance the need to inform their children about their disability without inducing feelings of being an outsider or internalized ableism?
What are some strategies to create an environment of belonging for atypical kids, both within the family and in wider social settings?
“I think the reason we want them to do everything the same as their peers is because we want them to live a good life. My good life has come by acknowledging all those things that I'm NOT going to do, and finding my own way, figuring out what's important to me, and how I want to live my life.
And then owning that, and doing it in some radical fun ways!”
-Sonali Vongchusiri
Connect with Sonali and Forward Together Parenting:
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Transcript:
Sonali: The intent of not telling our child is that we want them to feel like they belong.
We want them to fit in so that they can feel like they belong. And I think by telling our child, we worry that they're going to feel like they're on the outside looking in. What happens is the opposite. When we don't tell them, then in hindsight, they're like, wait a minute. I know for me, I can't speak for others, I can speak for me, for my own experience. The message that I got was there was this thing that was so terrible about me that it had to be kept from me. And I think that's where then the internalized ableism comes into play because it's like, I don't want to acknowledge this thing about me.
I've worked really hard at instead of me hiding, for them to be safe things for us to talk about together.
Kate: Are you feeling overwhelmed parenting your neurodivergent kids during these stressful times? Yeah, me too.
Welcome to Mindfully Parenting Atypical Kids, a neurodiversity affirming parenting podcast where you'll find connections, strategies, and support for your journey.
Introducing Sonali Vongchusiri as the episode’s guest
Hi parents. I want to introduce you to my friend Sonali.
Sonali Vongchusiri is a highly sensitive mom with three deeply feeling and strong willed kids. It took a whole lot of time to see that just because her kids didn't respond to parenting methods the way experts said they would, and just because her family didn't fit society's ideal of a perfect family in quotes, she wasn't a bad mom and she wasn't raising spoiled snowflake kids. In fact, now she knows for sure that they rock.
She also happens to be legally blind and have albinism. When she finally realized she didn't need to fit in to belong, it gave her permission to find her own way.
And now she supports others in doing the same, which I am so grateful for. Her work is dedicated to sharing with parents how it's possible to have fun with high needs kids and to raise them to be kind and compassionate, because she gets it both from being that kid. and from having those kids.
Sonali, welcome. I have never been so overjoyed to have any guest, previous guests, please don't take this personally.
I came across Sonali when some other educator shared raising your strong willed child. And as soon as I heard Sonali talking to these experts, I knew that I wanted to be in relationship with her in some way. I loved the summit and I highly recommend, her summits to you, but also, I feel so lucky to have gotten to know Sonali and what she's doing for parents is just an incredible blessing. You should definitely get on her email list because I love getting those emails.
Hi Sonali.
Sonali: Hi Kate. You've got me teary eyed with that introduction. Thank you for that.
Kate: Oh yeah, we're definitely going to go deep today, which is my favorite way of being. I'm not a fan of small talk.
I wanted to ask you, what is the difference between fitting in and belonging as far as you're concerned?
Sonali: To me, fitting in is looking around and saying, Oh, I need to be the same as everybody else. I need to do things the same as the people around me so that I don't seem different.
Whereas belonging is knowing that you are who you are and you're allowed to have your own set of needs, values, emotions, and they may be the same or different as the people around you and whatever they are. You can connect in them being the same when they are, you can connect them in them being different when they are.
And actually that difference that being an individual is what allows us to connect. We can connect in these beautiful, deep ways by noticing our differences as well as our similarities. The logo for Forward Together Parenting is the set of gears together. And I chose that specifically because each gear is unique and individual and part of the system.
Kate: Oh yeah, I love that.
Kate leads a meditation relating to feelings of belonging
I'm going to ask parents to pause for a moment, sit back, and you can do this with me too if you want to think of a time when you know you belonged, where you felt seen in your wholeness, in the whole of you, with all of the quirks, all the differences, all the things that make you really unique.
A time when you belonged, where you were seen, where you were accepted, welcomed, and beloved, exactly as you are, and notice how that feels in your body.
And now I'll invite you to switch to a time when you really had that sense that you were trying to fit in,
and maybe the first time you felt that in your life that you were trying to fit in.
And that something about, you had to be different in order to do that. [00:06:00] Notice how that feels in your body. We're not going to stay there for long. Just want to give you that awareness, sensation. For me, it's middle school. Maybe earlier, but that's when I really remember it.
I'll offer one grounding practice. Take one hand and find the web between your thumb and your hand. And you can relax this in your lap. So with your, thumb and index finger of one hand, you're squeezing that web with the other. I'm just giving it a gentle squeeze and rub, however firmly feels good.
This is a grounding practice. It can help us calm down our digestive system, our guts. It helps me stay grounded. But I noticed that those times when I felt the need to fit in and I wasn't really fully accepted or seen or known for who I was, that there was a lot of discomfort in my gut.
That's what I noticed. You can switch hands anytime. Noticing how old we were when we first had this experience, I think helps us in our, parenting, and especially in that practice of reparenting that I feel is so essential in mindful parenting, to understand where our triggers come from. They don't just come from our own family dynamics. They also come from being part of this culture.
You can relax your hands anytime and invite you to notice your seat, your body.
Sonali's childhood discovery of albinism resulting in her pain and anger
So part of this culture is, and it's a pretty global thing, wouldn't you say Sonali, ableism? I know you grew up in the United States.
Do you want to start wherever you'd like in your story and talk a little about how things were for you as a kid?
Sonali: I would love to.
A little background of me, I have albinism. I'm legally blind. I'm a person of color. I'm of Indian origin and I'm the only person in my family who has albinism and growing up, what I knew is, I knew that I was visually impaired.
What I thought that meant was that I needed larger books. That I had a special ed teacher that came once a week for about an hour to, like, make sure everything was sorted. That I sat near the front of the classroom and my friend and I got a free pass to pass her notebook back and forth so I could copy her notes.
Other than that, when I got home, I was the same as my family. And that was what I believed until one day that I distinctly remember in sixth grade where my special ed teacher came, and it was that once a week for an hour, and this time she came at the end of the day, and I remember I was sitting in my classroom, and she'd come in.
It was just me and her. And she said, Hey, I brought an article for you to read. Why don't you go turn on your CCTV and read it? And I put this newspaper article that she brought me under the CCTV, which is this machine that magnifies things so that I could read it. And it was an article about somebody with albinism, and that was the first time I heard that word.
I remember her asking me, do you know this word? And I probably was frozen at the time, Kate. I don't remember. But I hadn't. And I remember going home that evening, and this is sixth grade, so 12 years old, right? So as you mentioned, like middle school, those were tough years already. And I remember going down to where my mom had her office and these blue chairs in there and going to her and being really hurt and angry at the same time, and in a way telling her that I knew.
I remember her feeling really upset that I had been told, and then after a couple of moments, and me not having the capacity to be there to soothe her, I remember after several minutes her taking out this folder that she had of information on albinism. And in there was this biology report that my brother had written.
There were articles and clippings from different things. There was a pamphlet from an organization in the U. S. for people with albinism. And I remember this feeling of, like, wait a minute, the whole world around me knows this thing about me that I don't even know. And what it felt like in that moment, it was like, nothing in my world changed, and yet everything changed.
And I remember this, that being a distinct moment where I was like, Oh, wait a minute.
One of the things that I appreciate about you is you're so focused on coming into your body and grounding yourself. I was so dissociated from who I was. that the next day when I went to school, I finally heard what was being said every day.
Sonali's significant moment leading to a change in world view
Albino, whitey, Casper, witch. I couldn't hear. I literally could not hear those words before that day. And they were being said, I just, they didn't make sense with the world that I was living in. So I didn't hear them. And so that was the beginning where I think my worldview changed. And you could see it in that moment, externally, and after that moment, I was this kid that was nice, that was soft spoken, that kind of went along, I overnight became a straight A student, which tells you how, I was searching for some sense of self but internally, I was lost, and I felt alone, and I felt hurt, and I felt angry, and I think there was a deep bitterness.
And I think it was one of those things that you'd think that would be the moment where I was been like, okay, I have albinism. Let me figure out what that means. Let me get to know other people. It actually led to me denying who I was more deeply. I did not want anything to do with anybody else that had albinism.
I didn't want to talk to anybody else who had albinism. I wanted to pretend, just go about living my life the way that I did. I did whatever I could to try to fit in. I dyed my hair in high school. It was all these attempts. And I think that's why I really love that question that you asked at the beginning like the distinctions between fitting in and belonging, because I think I spent so much of my life trying to fit in, trying to be the same, trying to pretend like I did not have albinism, that I was not legally blind, and even though I knew I was visually impaired, I didn't have an understanding about what that meant in terms of my needs. I thought that meant I could do everything the same. It was just a thing that I said. I remember distinctly in job interviews saying, Oh yeah, and I'm visually impaired and have albinism.
All that means is, I need to have a machine that makes things bigger. Sometimes I'll, use a magnifier and other than that, everything is the same. When really then what I would do is I would compensate by working until midnight, 2 a. m just to be able to complete the normal amount of work.
On the outside, especially as I got into young adulthood, I looked like somebody who was successful, especially as a person with a disability. I have a master's in math. I had a great job in consulting and yet on the inside, my internal experience was so much stress because I kept more deeply and deeply abandoning who I was.
Concerns about children feeling like outsiders and internalized ableism
And part of the reason I care about parenting it so much is because I remember that moment when My son, my oldest was born, and I thought, what I had been told was that because I have albinism, he would have his dad's pigmentation. I'm of Indian origin, my kid's father is of Chinese origin, so I expected them to come out with his pigmentation.
But when my oldest was born, I looked at him and I was like, this child does not look like he belongs in my arms. Does not look like he belongs in his dad's arms. His brown hair, brown skin, brown eyes. Put him in my mom's arms though, he looked like he belonged. Like that's where there was a match.
It was like that moment, Kate, where it was like, uh oh, I guess I'm going to need to deal with this now. Because now, I've brought in children [00:15:00] into this dynamic where I didn't know, I didn't have the skills or the tools. Whenever anybody would ask me a question, and they usually didn't even ask me, it was usually to my family, like, oh, why is she so white and you're so brown?
Oh, her dad's different? Oh, she was adopted, right? And it was all these questions. I didn't know how to answer them. I just shut down and shriveled up into this ball. You could see me like curling up. And I was like, uh oh. My children are going to have the same question. I always used to joke, like, people would probably see me walking down the street, especially after I had three and be like, wonder what the dad looks like.
And then if he happened to be around, wasn't expecting that. So it was in those moments where it's like, I don't want my kids to have that same experience. They are going to get the questions. They do get the questions now, all the time I didn't want them to shut down, to hide, when somebody asked them, why do your mom's eyes do that?
Or who is she? Is she really your mom? Or, were you adopted? Or okay why is she white and you're brown? Because they get those questions all the time. And I think one of my greatest points of pride is how they navigate those questions.
Sonali's acceptance of her visual impairment and its impact on family life
Kate: Do you want to tell us a little about how they navigate those questions? Like what they say?
Sonali: Sure, absolutely. For example, my daughter, who is seven now and I started when they were really young, I'd be like, Oh, I'm white and you're brown. And I say it in a sing songy way.
And I remember one day when she was potty training, she looks up at me, she's singing Let It Go, which is ironic sitting there. And she's like, you look like Elsa. And I'm like, no girl, Elsa looks like me. I came first. Elsa has albinism. And so we would joke like that. And they've been through these experiences because they've heard people say, Oh, your daughter ? Why don't you guys look the same? Really, your daughter? And so we've had all sorts of conversations about this. And so when I asked her now, I'm like, What would you say if somebody said, Why is your mom white and you brown?
And she's like, “I would say she has albinism and I have piglet.”
Haha! Isn't that hilarious? You can't make that up!
Children’s confidence and humor in responding to questions about appearances and family differences
My oldest has told me, Oh yeah, people ask me. Like, when they see you, they're like, who is she? And I'm like, she's my mom. Bruh, who is she, really? And he's like, Google her. I love that. How old is your oldest? My oldest is 13. He's even shared things, and I'm sure, it's not a politically correct response to things, but he's had friends ask him, or when they've met him at first, been like, oh, so you're adopted.
And this was a moment of pride for me, Kate, because I remember that question, and one, feeling like it was a bad thing, and two, feeling like it was like my belonging was [00:18:00] constantly being challenged or being questioned. And he's like, yeah, this person asked me if I was adopted mom. I let him believe it for a whole week before I told him.
And to me, what that says is that he has a solid sense of self. He knows where he belongs. We don't need to be the same skin tone to know that we belong.
My middle son is like, oh yeah, people ask me like, why does your mom squint? Like how can she see if she squints? And they're like, that's how she sees.
So to me, it is this, I hid for so long, even from my kids, the things that I could not see or do. And it has been this very slow, gradual waking up process of discovering who I am, and I am not done.
I'm nowhere near done. I'm still discovering things all the time.
I remember holding my middle son. He was probably two and we were in the park and he points up to the sky and he's like a bird, a bird. And I'm like, yes, that's a bird. That's outside me saying, yes, that's a bird. Inside me is like, Sonali, what are you doing? This is misinformation. You have no idea if that's a bird. And now we can have conversations where,
instead of me hiding or protecting these things, for them to be safe things for them to talk about, for us to talk about together.
We were just visiting my mom. I was sitting outside enjoying the crisp weather of the U. S. He came out, he was concerned about moths, and he wanted to sit next to me. He said mom, is there a moth out here? And I'm like, well, kiddo, I don't see one, but I don't see. So take your own risk.
We use a lot of humor. We also talk about the real impacts of things to us. Like, there are times where my son has belt tested at Taekwondo. I've sat right there in the waiting area, watching him quote unquote, but I didn't realize he was belt testing. So I'm sitting there staring at him, I didn't take out my phone, I didn't realize what was happening.
And then when he came out afterwards, both of us needed to process that crushing disappointment because I was right there, yet I didn't see it. And he knew that I was right there, and he knew that I didn't see it. And that was a really hard thing for both of us. Because had I known, I would have taken out my phone, magnified, so that I could see that he was belt testing.
But I just didn't know. There are all the moments.
Stories of how Sonali's sensitive family accommodates each person's unique requirements
Kate: Your kids, do they have differences too? I know you talked about them being highly sensitive. I'm just wondering like how that translates to your dialogue together about their differences and also their inner conversation.
Sonali: Yes, we joke that we're all somewhere, we just don't always know where. But we're all highly sensitive. There's sensory sensitivity. We're a very deeply feeling family. [00:21:00] And very attuned. And so some of the stories that I share around how my son, when he was younger, he used to have four hour meltdowns if I even played a song, right?
And so it's been this interesting space of all of our individual needs, and then coming together as a family system, and how do we meet all those needs? Yes, we're all neurodiverse in some way. I don't always know exactly where we are because we focus on what is it that we need?
What do we have the capacity for? And then we go forward from there. Some of the things that we've worked through. My son couldn't leave my side and would have had a meltdown to where we unschooled because homeschooling with curriculum wasn't even possible, to now he's thriving in school and there are people that will say to me, wow. They say this consistently every couple of years, they're like, the kid that I knew a couple of years ago, he's so confident now. He seems so free and he's glowing. And it's because this discovery of our needs, like genuinely, what is it that we need?
It's okay to need quiet. It's okay to need space. It's okay for it to be too loud for us sometimes, like that we can go places and they say, I'm just getting really frustrated because it's so loud in my ears. That's one of the things I'm like, it gets very loud in my ears too.
And we have those conversations and we talk about those things. So we know we're like, okay, before we go somewhere, Kate, we're like, look, especially if it's a loud place, look, it's going to be loud. We're all going to need to be able to figure this out together. And remember, we're a family team. And then, when we get back, let's figure out what we're going to need.
If it's somewhere hot, or sunny, then we get back, and I end up closing the curtains and hanging out in the dark for some bit, and the air conditioning. And if it's somewhere where it was really loud, we all might need to retreat into our own individual spaces, and it's really us meeting our needs in that moment.
So one of my favorite stories is after Songkran, which is the Thai New Year, it's the hottest time of the year in Thailand. You go outside and you splash water on each other. It's a way to cool down and a way to celebrate and I love it.
It's a lot of fun. And because it's so hot, the next day, I usually need to recover. So last year, the recovery day, I'm in the kitchen doing the dishes in the dark, cause I don't really need the light. And my daughter comes in and she doesn't like water. She doesn't like getting water on her face.
So we had that conversation and I was like, oh, well, yesterday, it was really bright and hot. So today I'm just, you know, giving myself that break, letting my eyes rest. And she's like, oh, so does that mean you don't like songkran? And I used to think that too. There was a lot of messages that I internalized as a kid that if something was hard for me or challenging, it must mean that I don't like that thing or that I don't care. I told her, I used to think that too, I'm like, but now I realize it just means I like that thing. [00:24:00] I like Songkran, and I need to rest the day after.
Kate discusses her son’s autism diagnosis and the decision to talk openly about it
Kate: That really gets me thinking about Ocean's differences and especially things like, you hear a lot with autism that, autistic people aren't social. And I think that is such a silly oversimplification because what I've seen is, the autistic people I know really enjoy being social, but kind of like that. Like it takes a lot of effort and energy. And there's like a recovery period, and it might look different from neurotypical people being social. But, the desire for connection and belonging is absolutely there. Ocean was diagnosed when he was like two and a half and I was so excited that we knew what was going on with him and how to help him, and that we would get more support, that I really wanted to shout it from the rooftops. And I got this message that he shouldn't know until he could keep a secret. That he shouldn't be told his diagnosis until he could keep a secret.
And this was more, I think, meant to protect the other kids he might be in school with that he wouldn't start talking about it and then they would find out or something. Maybe protect him from bullying or being targeted or something. I really still don't understand the whole picture of it but I do know that it went against my intuition.
My intuition was really like, just be talking about it all the time like I have brown eyes, you have green eyes. I have anxiety, you have autism. These are the traits. This is what makes each of us a little different in what we're dealing with. I have sensory processing challenges. You have sensory processing challenges, but they're different. And we did talk about differences as a family a lot. And we didn't talk about that diagnosis because of that advice that I had been given. And then there were friends that we were really close to that were saying, we're not sharing the diagnosis with our child yet, and if you tell Ocean, he's definitely going to talk with them about it. We have to coordinate, and we're not ready, which, it was an awkward position.
One day he was like, I want to say six or seven. It really just came out. Like I had been wanting to do it for a long time.
I'd been talking about strengths and challenges for a long time. And it really just came out and I wasn't prepared for the questions that he asked. He asked a lot of questions and they were really good questions and I was so happy [00:27:00] to be having this conversation. And then he asked, which makes so much sense, but I never thought about it.
Who else do I know who has autism and is so and so autistic? And instead of saying what I should have said, which is, I don't know. That's up to their family, to talk about or whatever. I said yes. And this almost destroyed the relationship with his best friend. Because they weren't ready and it wasn't my place to be telling Ocean something about his friend that his friend didn't know yet. It's like your, I guess your brother wrote a report, right? That's what I thought of when you said your brother wrote a report on albinism and you hadn't even known about having albinism. No one wants other people to know something important about them.
I wouldn't want other people to know something about me that I didn't know. Like, why did that person find out first? Why did anyone find out first?
He did have other friends who had the same diagnosis and he went to a school that there was a group of kids who had the same diagnosis.
So he really did have his people. And in elementary school, there was a real embracing. And then fifth grade, I got questions. Why didn't you tell me sooner? Why did you wait to tell me? Why didn't you tell me sooner? And I tried to explain, but there really wasn't a great explanation.
And then I noticed as he got into middle school, some of that internalized ableism happening. So I'm curious where it's going to go from here as he starts high school, but it really hurts, when I see that and the mistakes that I've made in that whole process.
I talk about it a lot because, I do think it's important to tell your kid, especially if they have a specific diagnosis, to have them know within reason, developmentally appropriate words, but to know.
Challenges faced by parents in embracing and discussing their child's disabilities
Sonali: Yeah. First of all, I put my hand on my heart as you were sharing your story because I could feel that conflict. You wanted to honor what other people were saying and needing, and then you also felt this deep intuition inside of you, Kate.
The intent of not telling our child is that we want them to feel like they belong.
We want them to fit in so that they can feel like they belong. And I think by telling our child, we worry that they're going to feel like they're on the outside looking in. I think what happens is the opposite. I think when we don't tell them, then in hindsight, they're like, wait a minute. I know for me, and I can't speak for others, I can speak for me, for my own experience. The message that I got was there was this thing that was so terrible about me that it had to be kept from me and I think that's where then the internalized ableism comes into play because it's like, I don't want to acknowledge this thing about me. I don't want anybody to [00:30:00] know. Or, oh, hey, look at all these other things about me. Pay no attention to this part of me.
And that's, I think, where my internalized ableism was what actually had me continuing that discrimination, like that stigma, because of not speaking about it. And I think, it sounds like that happened, and even now, he's like, well, why didn't you tell me earlier?
So he's asking these questions. One of the things that I talk with my kids about, so we do a lot of the joking, we also have a lot of real conversations. I'll talk to them like, Oh, the way that person asked that question, I didn't feel like answering it. Or, there are some people that think this certain way about me and that's the reality of the world that we live in.
Sonali's advocacy for a world that embraces differences
And we've had conversations about what is discrimination and when have we experienced it. So there's a lot of humor that I use in a lot of ways because this is such a topic on the outskirts. So even when I started to use the cane a year ago, it was really interesting to see my kids response to it.
And how each of them had a different response to it. And one of my kids, he was like, No, no, no, I don't really want to come. And I was like, Hey, come with me. Let's go see. But I had to position it as, Watch what happens. I knew he likes playing with power and I was like, watch what happens when I take it out.
Watch, watch what happens. And he walked up and he's like, whoa, people are just flying out of your way.
And then we got to the grocery store and I put the cane away because that's flat surface. And for me, it's a lot of it is depth perception and light and the impacts there. And and there was somebody standing in front of us and you could see that he was already like the power of this cane.
And somebody was standing in front of us at the grocery store. So I was just like waiting politely for them to move. And he's like, mom, mom, mom, take out the cane. And then we had to have the conversation about like how to use it. But there is that, like I have it deeply internalized too.
The benefits of finding a supportive community to deal with feelings of otherness
It's been something that I'm constantly working on. And you said something at the beginning where you mentioned my email list and the Raising Your Strong, Willed Child series. And it's been really interesting for me because when I did the first series, I remember I felt this conflict with myself because I'm like, I want to put this series on. I hadn't done a lot of the work around my own having albinism, being legally blind. And I was like, well, if I'm doing these interview series, they're going to be like, Sonali? She does not look Indian and why do her eyes go back and forth, and why is she squinting and I'm like, and that's going to be distracting from the message that I want to share with parents. So I put a PS on that email and I just said, Oh, hey, by the way you may notice when you watch these videos that my eyes go this way, or that I'm switching. My name is Indian, but I've got blonde hair and that I'm fair skinned. I have albinism and am legally blind.
That was the first time that I said it in such a bold way. You mentioned, how you've received support from the series. Well, in so many ways, this community, everybody being there has supported me in being able to move through my own internalized ableism, my own shame, because there was this mission. There's this purpose that was deeper, was greater and allowed me to move through those spaces.
The dilemma of labeling children in an ableist society
Kate: Oh, I love that.
As we wrap up, I would love to just mention, why would parents, I mean obviously parents don't want their kids to have internalized ableism, but if the world is ableist, why would we want our kids to be walking around with a quote unquote label that might stigmatize them or cause them to be targeted by ableism in some way.
Sonali: What I know for me is that what I felt before is that I was told I was the same, yet I felt different and that felt wrong. And it took me into adulthood to reach out to other people with albinism and build a community for myself.
And that has been one of the most liberating things. For me to be able to say, Oh, hey, guess what happened to me today? Because it's a daily, like, some people say something or something will happen. And to be able to have a community of people where we can share those experiences and we don't have to explain them.
That for me has been liberating. So I think when we use, The label as an access point, as a portal into our needs, to get our needs met, I think that's when a label can be really empowering. So I have that community where I belong, but I also have it with my friends, and I have it with my kids. My oldest the other day, I was walking, we were leaving home and I was walking towards him and he must have like, He had a pillow and he like faked threw it towards me and he was like, Prob, when your mom doesn't flinch because she can't see you.
I would have felt shame in the past that my response wasn't what he had expected, because he was like trying to create that moment of connection by trying to get me, and it wasn't that response, but instead we were able to connect. He thought he was gonna get me it did not faze me at all, not because I'm like stealth, but because I just didn't see it.
Sonali's approach to using labels for accessibility
I think that's also the reason why sometimes we, as parents may hesitate to share a label because we want our kids to feel like they're the same, because we want them to belong.
I am a capable person with a disability and there are things that I will never do, like drive a car. There are many things that I will never do. And I think sometimes that can be hard to hear for a parent. And I feel that so deeply, because we want our kids to be able to do everything the same as their peers. One of the things that I started saying, I'm like, I just don't have the capacity for that.
And someone's like, aren't you short selling yourself? And I'm like, no, I'm liberating myself! Because I'm realizing where my capacity is. So what I want parents to know is that your child, they may not be able to do everything the same as their peers. And I think the reason we want them to do everything the same as their peers is because we want them to live a good life. And like I mentioned, for me, my good life has come, actually, by acknowledging all those things that I'm not going to do. And finding my own way, figuring out what's important to me, and how I want to live my life. And then owning that and doing that in some radical fun ways.
Kate: At least in our kids generation, I truly believe we can change the tide and create a more inclusive world.
Sonali: Yeah. And I think it's by, instead of trying to hide the elephant in the room, really talking about those elephants and acknowledging them and letting them be that space of connection.
Kate: I would love to keep going with this. I feel like it's just the first layer, and it might be enough today for you, and for listeners. I'm wondering how you're feeling.
Sonali: I'm feeling really good and appreciative of you creating this space, Kate. Thank you.
Kate: The final questions that I usually ask: what you most wanna be remembered for, and what are your core values, especially related to parenting?
Sonali: What I want it to be remembered for is that it's not about doing something somebody else's way. It's about finding your way. That's for your child. That's for you as the parent.
And my core values. That is such an important question. You don't need to fit into belong. Also, we all need not only acceptance, but also the energy of receiving. When somebody walks in the room and their eyes light up, and you're like, oh my goodness. They're thrilled to be with me, that feeling. Anybody that shows up differently. It's not just acceptance, but receiving.
Striving for a balance between a child’s needs and a parent’s needs
Kate: Something just came to mind that I've heard you say that has been so impactful as a parent for me is that we can get our kids needs met and our needs met. We don't have to choose between them.
Sonali: Yeah. That both needs matter. And that has actually been, between my own needs and my kids needs, that was the only way to do it.
It brought this sense of stability, of security, and deep satisfaction to know that their needs matter and my needs matter. And that is absolutely, thank you Kate for bringing that up, one of the core things I support parents in doing is, how can you meet both your child's needs and your needs together?
You do not have to choose.
Kate: I love that. There's more to unpack here, but there's also so much more that I would love to talk with you about and I know parents are going to have questions. Thank you again for helping me open up this topic. Maybe it's a suitcase that we're unpacking. I don't know.
I just am so grateful to be in conversation with you about it Sonali, thank you.
Sonali: Thank you, Kate. It's so good to be with you. And thank you parents, for being here.