Show Notes

 

Rabbi Shoshana Meira Friedman is a writer, mother, climate activist, and passionate creative in many different media. She is co-founder and director of The Artist Beit Midrash of Hebrew College and JArts, and speaks and teaches for Dayenu: A Jewish Call to Climate Action. A late-diagnosed Autistic woman, she posts regularly @rabbishoshana about the transformative power of Autistic identity and neurodivergent-affirming parenting.

Rabbi Shoshana’s writing has been published in various venues, including The New York Times, Tablet Magazine, YES! Magazine, WBUR’s Cognoscenti, and JewishBoston.com, as well as in the books Rooted & Rising: Voices of Courage in a Time of Climate Crisis (Rowman & Littlefield, 2019) and The Sacred Earth: Jewish Perspectives on Our Planet. Her first picture book, The Tide Is Rising: A Climate Movement Anthem is forthcoming from Beaming Books.

Rabbi Shoshana’s music has spread around the world through her climate anthem, “The Tide Is Rising,” co-written with her husband, Yotam Schachter. Her original album Guesthouse is available on streaming platforms.

She was ordained by Hebrew College in Newton, MA, and is an alumna of the Wexner Graduate Fellowship, JOIN For Justice, and Oberlin College where she was also a Henry David Thoreau Scholar. She has served rabbinic roles at Temple Sinai of Brookline, Shirat HaYam of the North Shore, Temple Beth of Portland, and the Jewish Community Day School of Greater Boston. She lives in Boston with her husband and son.

 

 

Do you still feel surreal as parents of kids with special needs?

This show is for parents who are mourning the loss of the life and the child they thought they would have. This show is for parents who are tired, lonely and see no hope in sight. 

You will learn how to deal with your non-verbal child with a sensory processing disorder, seizures, meltdowns, haircuts, and family trips. Embark on a journey of consciousness, self-care & meditation.

My name is Chad Ratliffe. I am a single father of five kids within 6 years of age and two of them are with special needs. 5 years ago, in a nasty divorce, my depression led me to addiction and hopelessness. Today, I share with others a life I never imagined possible.

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If you find our podcast beneficial, you can help us continue producing the show by subscribing on our Patreon. We are truly inspired and grateful to create a community for parents raising their children with special needs. 

SUMMARY KEYWORDS

autistic, child, autism, parent, feeling, special interests, life, sensory, parenting, hard, understand, artistic, body, called, pda, people, sense, disability, kid, regulate

SPEAKERS

Shoshana Friendman, Chad Ratliffe

 

Shoshana  00:00

Autism is an underlying brain wiring that privileges deep long attention on something this is the theory of mono tropism sees details before putting together the big picture. This is called bottom up processing. It often co occurs with other medical issues, it can definitely and co occur with intellectual disability, which is another one of the kind of like visibly autistic presentations.

 

The CO occurrence rate is decreasing the more people understand how broad and diverse the Autistic community is, there's a higher proportion than we thought of people who are autistic and not also intellectually disabled. What particularly is so important about knowing whether you're autistic or not, is that the operating system of your brain is different than if you're not autistic, and the things that help you regulate and be well and sustain a life are different.

 

Chad Ratliffe  01:00

 

 we have such a gift today from Rabbi Shanna Mae era Friedman, who brought us our grounding exercise our meditation before we get to the show. So Rabbi Shoshana, welcome.

 

Shoshana  03:33

Thank you so much, Chad. I'll begin with mindfulness meditation. So I invite you to find a comfortable position which might be lying down or standing or sitting. And feel free to move or fidget or rock if that helps your body regulate and relax. Take a deep comfortable breath in and out. More time in and out. And just now allow the breath to enter and leave your body naturally. Noticing that there's no effort here. The atmosphere breathes us in and out without our having to think about it. Bring your attention now to where your body meets the ground or the chair or the floor.

 

 what that feels like against your skin or your clothes. Feel the weight of you the hug of gravity that is keeping you on the planet again a gift without any effort from us. Allow yourself to sink in to the ground, surrendering your weight to a world that can hold you. Now in whatever position you are in, picture that below your waist into your legs are roots that your entire lower body is actually underground snuggled into the soil as though you are a tree. Feel the weight of this, the grounded sensation now imagine these roots going deeper deeper into the soil until they hit bedrock. And deeper still the energy of your body's roots going all the way down into the core of mama Earth. It's so easy to forget because we are mobile creatures, but we grow from this planet just as sure as a tree grows. Every atom of us is from her and will return to her. The planet supports us unconditionally in a very real physical sense. She is the parent of us all. Keeping your legs in this deep grounded imagined space.

 

turn your attention to the inside of your body to your bones. could start with anywhere that you can find some felt sensation inside your body it might be your upper arms, your ribs, your legs, take a moment bring your mind inside your body letting the breath come naturally feeling the weight of your own bones, the strength of them, holding you up. Holding your body in integrity. Now again, in whatever position you're in. Note that your spine connects your body and holds you upright. Just as a tree trunk does. That your other bones are peripheral bones are like branches reaching up and out. This is your energetic core. It is you it's your essence. No one can be this but you no one can take it away. Now in your mind's eye see a beam of sunlight that is coming down from above a beam of sunlight that is exactly for you. No matter the time of day or the weather. This beam of sunlight is always Shining.

 

Shining onto your body shining deep into your bones just the way that sunlight nourishes the tissues of a tree. We are each of us, humans, earthlings, held here by the warm hug of gravity and the bright light of the sun. And this is as true scientifically as it is spiritually. Throughout the haze and rush and overwhelm of our days, this support is available to you 24/7 No matter where you are, or how you are, how hard or how joyful things are. Your roots go down and your core goes up and you are nourished. This support is available to your child or children to its it's our birthright as Earthlings. As you go forward in your day, you can remind yourself I am grounded. My core is me.

 

I am grounded my core is me. Let's allow another Cleansing Breath. Feeling that energy coming up from the core of the Earth through our roots into our bodies and out and another breath this time receiving the light from that special Sun beam that is meant just for us. deep into the core of our bones I offer gratitude to my teacher, Linda Cythera, Energy Master and teacher for inspiring this version of her energy basics and gratitude to you for your attention and practice today. Come back to your body, wiggle fingers and toes and flutter your eyes open.

 

Chad Ratliffe  10:37

While we're at it treat. That's amazing. I love that we do this at the beginning of the show, because I hope that it reminds me and our listeners that it doesn't, we don't need lots of time to kind of get away from some of the challenges that we face on a daily basis.

 

Shoshana  11:03

Yes, that's beautiful. And I've never been on or listened to a podcast that does this. So I commend you. And I'm grateful.

 

Chad Ratliffe  11:15

Well, I am excited to learn more about you because I only know a little bit about you. I know you're a rabbi, you're a writer, you're a mother, you're a climate activist. You're very creative. In many different media outlets. You've served in multiple Jewish communities, your writing has been published in the New York Times and yes magazine, you have a picture book, The tide is rising, a climate movement anthem is forthcoming from beaming books, and a late diagnosed autistic woman she posts you post regularly. There's so much to you tell us what I missed. Let us know who we're going to be hearing from today. And welcome to the show.

 

Shoshana  12:08

Thank you, Chad, thank you for the warm welcome. And thank you to all of the listeners and viewers, I would not have thought I would get to be on a parenting podcast, I have been extremely surprised by the turns that my life has taken. And that's a lot of what I want to talk about today. I was raised with a lot of creativity and big dreams.

 

 And I really dreamed of saving the world from the environmental crisis, when I was a very little girl feeling I hyper empathic and was feeling the pain of the world from a very, very young age in a very overwhelming way. And this led me to, to feel responsible in a way that I think, you know, some people do, but many don't, in a very personal way for making the world better. And I now can look back at that and understand it from the perspective of realizing that I'm autistic and that it's actually common for autistic children who especially those of us who are hyper empathic to create stories about these sensations and feelings that we have in our body, and to feel responsible for the pain we feel because we don't otherwise know why we're feeling it.

 

And that feeling of wanting to save the world. There's a word for that too. It's called grandiosity. It's also a story that is often comes along when a child is particularly gifted in some areas, but struggles and others. So that was definitely me. And it's this question, you know, without understanding who I was, I made up unconsciously the stories that could make sense of who I was that I had something I needed to offer, that really, really drove my life. I finally found my stride in my early 30s, I went to rabbinical school, which is a full six years full time study program after undergraduate. And I learned so much about my own tradition, I was steeped in Torah study and Talmud and liturgy, and learning prayers and was extremely into all of it.

 

 Felt that as someone who loves to perform and loves to do public speaking and loves to teach, this is a career that made a lot of sense for me. And many progressive rabbis are also activists because we can use our pulpit we can use our title to help change the power systems that are causing so much suffering and harm in our world. So it really was a dream come true for me. I found my place in the climate movement in around 2015 My husband and I wrote a song called The tide is rising, and it went viral has gone viral over the last eight years in the movement. Lots of people know it again, like dream come true as a creative empathic kid who wanted to change the world like my musics going places. I get to give sermons I got really into doing civil disobedience and to supporting those groups.

 

 A non violent civil disobedience to stop fossil fuel projects or to try to stop fossil fuel projects. Essentially, my early 30s Was this like homecoming into a dream, right? I had dreamt this thing, and it had manifested. The world is burning, but, but I was doing the work that I had been called to do. And then I got pregnant. And so many of the coping strategies that I had had started to fall away. I had not realized I hadn't put it together, how anxious I felt in my job, how often I was on the couch and panic attacks in between meetings, how hard it was for me to eat lunch, just to calm my body down enough to eat. It wasn't like, oh, I can't make time for lunch. It was like physiologically I can't swallow because I'm too hyped up how hard it was to sleep, how exhausted I felt after interacting with my amazing congregants who I adored and did not feel anxious about in any cognitive sense, but my body was and I did not have language for any of this, though I was in therapy this whole time. And my pregnancy was difficult. And the birth was very difficult. And I gave birth to an extremely beautiful and vivacious and huge emotions, baby. And I stopped being able to sleep much because of being a new mom. And I was recovering from a difficult birth. And that ended in the C section. I was a complete mess. The medication that I had been on for 18 years I knew had sort of Workday, and I needed a new med. But because I was pregnant, I couldn't shift medications I had tried and had an allergic reaction, it was a crazy story. So I was essentially, in what I now know, was a period of acute autistic burnout, where I was really barely functioning only able to take care of my child and my most like very, very basic needs.

 

 But I was also expected to go back to work full time as a pulpit rabbi, which I tried, and then ended up going down to part time. And what I want to talk about today, and I don't want to sort of give away the whole story here, but the X I'd like us to have more maybe have a back and forth. But where I stand now is what I will that story I'll tell about my child and discovering who he is, was the key to discovering who I am. And the key to understanding what about the life I was living and the big dreams I had dreamt wasn't actually working for me. And what might a life look like that does work not only for my child, but also for me?

 

Chad Ratliffe  17:27

Well, that is probably the deepest way I've ever started to show as beautifully spoken. And I don't know if you remember when I was introducing you in the bio, I tripped up my words, because I read I thought I was gonna I was reading it wrong. Because when I talked to you, I didn't see anything autistic. So I thought I was reading it wrong. And I'm like, can you share kind of when did that start for you? When did you know and for the people that are saying she's not autistic? Like, I'm autistic people.

 

Shoshana  17:59

So yeah, so I'm just writing a story about this. So one big so just a little bit of public education before we get into my specifics, because this is like I'm autistic. And this is currently my special interest is educating about autism. So we have a very, very narrow view as a culture, very outdated and narrow view of what autism looks like. Autism doesn't have a look for years it what and in many circles still and pediatrician still and therapists still are operating under a very outdated mode that certain very particular externally observable traits such as lack of or low eye contact, flat voice affect visible stems, like rocking back and forth or hand flapping particular interests in trains and math, that those are weird, or how you diagnose whether someone's autistic or not, or they're the things that in a neurotypical person would look at someone and say, oh, yeah, that's autism.

 

There are many autistic people who more or less fit what I just described. And there are many, many, many who don't, it's a little bit like if somebody said that it's like any stereotype. Well, in this particular case, there are people who fit the stereotype and it's not it's not it's not a negative stereotype. I think it's sort of like saying, like, I have a gay friend who likes to wear pink and is into Broadway, therefore, and I know, you know, there's plenty of gay men who wear pink get her into Broadway. Therefore, if you're not wearing pink and you're not into Broadway, you are not a gay man, that just doesn't hold water, but that's pretty much where we're at with autism. So, autism is an underlying brain wiring that privileges deep long attention on something this is the theory of called mono tropic mono tropism and sees details before putting together the big picture. This is called bottom up processing. It often co occurs with other medical issues, it can definitely and co occur with intellectual disability which is another one of the kind of like visibly autistic presentation Since, though the CO occurrence rate is decreasing, the more people understand how broad and diverse the Autistic community is, there's a higher proportion than we thought of people who are autistic and not also intellectually disabled. What particularly is so important about knowing whether you're autistic or not, is that the operating system of your brain is different than if you're not autistic. And the things that help you regulate, and be well and sustain a life are different. And so if you are like me, and I'm in the middle of writing a piece that hopefully will get published at some point soon, but I don't have an outlet yet.

 

But I'm writing a piece about this, because I was in therapy for 20 years, 20 years people and I was talking about feeling buzzing in my body, and feeling sense really overwhelmed and feeling hyper empathy and this weird amorphous sense of needing to save the world. And a strange thing that happened when I was a kid where I was like, completely obsessed with a teacher where it kind of ended badly, and my eating issues and these episodes of feeling so just like upset that my emotions are so overwhelming, that the only thing that would help me is to slap my face to get that like that the sting of it would actually be a calming mechanism.

 

 I brought this to therapy. Okay, but people never suspected I was autistic, because they're looking for those outward, the Broadway in the pink, right? It's like, yeah, those are traits fine, but their eye contact and hand flapping are autistic trait, lack of eye contact, and clapping are autistic traits, but they are not diagnostic autistic traits, they are not traits that without which you are there for an autistic. There's a whole profile of autism that I fit, but people don't know about it. It's hyper creative, hyper empathic, feeling sense, really sensitive, and having really different modes of socializing and communicating. So just one more little bit on this, like education soapbox is the DSM five, which has autism in there as a disorder. And there's different views on whether to call this a disorder or not, I am personally of the mindset that it is for sure a disability.

 

And that autism itself is a valid way of being that does not require treatment, but is very, very easily vulnerable to disorders. But it's not necessarily itself a disorder. But there's definitely different ways of thinking about it there. So in the DSM, if you look at it, you can just Google DSM five definition of autism, the word deficit comes up some ungodly number of times, and the way that autism is defined in the DSM is all about repetitive behavior. So that would be the stimming. So like, I'm here with my potty, so I'm using my therapy, Patty, otherwise, I would not be able to be sitting still. And repetitive behaviors could also be include this, like what medically used to be called, still is called it shouldn't be called restrictive interests, but which the Autistic community either called special interests or artistic passions. So the DSM talks about that whole category of autistic experience. And then the other one they talk about is social deficits, deficit deficit deficit deficit,

 

What they see what they don't yet understand, or what the model is not yet seeing is that autistic people socialize differently, we have different ways that we prefer to communicate. Some autistics do identify as having social disorder in that like, and to some extent I do, too, like just talking to another person will raise my heart rate, I wish that didn't happen. And I'm working with an OT to help with that. But my preference for info dumping, which is what I'm doing right now, for taking a chunk of information that I'm passionate about and just talking at someone about it, that's an extremely common preferred mode of communication for autistic people. The neurotypical medical world sees that as a deficit, they see it as something that you need to be trained out of that should be the autistic person's job to, like, pick up on the subtle cues of someone else getting bored or uncomfortable. In just a culture. That's just the way you communicate. And it's great to, you know, maybe you want to time it or like with my husband, especially with non neurodivergent people try and really trying to do what I call consensual info dumping. I want to talk to you about this thing, can I have five minutes, instead of just forcing myself on someone, but the social piece is really critical. And I kind of lost my train of thought a little bit.

 

But essentially, it's important to understand that part of what oh, I know, the part of like this profile of autism that I am, and it doesn't, there aren't like specific profiles that anyone's exactly mapped out. But there are women I've met most of them women who are a lot like me, and we have a lot in common. We did really well in school, we had a lot of sensory sensitivities that didn't cause anyone else any trouble, right? We weren't going into fight mode and destroying the classroom. We were going into freeze and like pulling out our cuticles, you know, it's just a different thing.

 

So no one picked up on it. So sensory sensitivities, hyper empathic, hyper creative, and Difficulty regulating our emotions difficulty in with daily things like picking out the clothes that won't be super uncomfortable or shopping and grocery stores or feeding ourselves because food, and our nervous systems can just not match so well. And then that we socialize. Yeah, in just different ways, often preferring one on one not always. So that's just a little bit of like, yep, I'd like to stick you can believe it. And if you don't, I'm writing a memoir about it, and you will by the time?

 

Chad Ratliffe  25:28

Well, I gotta tell you, first of all, please send me the memoir. And I've had,

 

Shoshana  25:33

in some years, it'll be done out somewhere.

 

Chad Ratliffe  25:37

I've had to force myself to stay extra present on this conversation, because what's been going through my head the entire time is Oh, my gosh, I'm autistic. I have every one of those things that you've just said. And that's another story another show. I need to unpack that. But I've had I had some severe like, learning challenge. It just gave a

 

Shoshana  25:58

very wide, it's in super like, oh, you know, what does it even mean anymore, but it really just like I plead with listeners and viewers to not be like up and then the label has no meaning. It really does. Because throughout the diverse presentation of what autism looks like, the user manual for how to take good care of ourselves is actually very similar. Virtually all of us, and I'm getting this I'm speaking from my own experience, but I'm also getting it from spending a lot of time in artistic spaces online and doing a lot of reading, but I'm not a clinician, but in general in the autistic world, autistic people are understood to be more at this point experts because a lot of the clinical world is still operating on some very outdated and often harmful models.

 

But it's actually right the Autistics like self care manual includes lots more rest than neurotypical people need, because our brains are literally just taking in more information. So it's more exhausting to process. It includes finding the stems that work for you. So for some people, it's rocking. For me, it's a lot of putty or like something sharp to have. I would sit in class just like doing my hair over and over. If I couldn't be taking notes constantly, like what are the stems that suit you I just got myself a compression vest, I spend time in our therapy swing at home. Little fidgets are really helpful.

 

So it's rest stems, self stimulatory soothing behaviors, and then special interests, which is this incredible key and like, I look back on my life, and it's like, oh my god, it's been one series after another of deep passions, that when I find it, the lightening up, it's like compulsive, but it's so healthy, that neurotypical like medicalized version of this used to be, and I think it may still be happening somewhere that children would get, would only get to, like, engage in their special interests as a reward, which is extremely disturbing, when I hear about that happening, or hear that it used to happen. Because for an autistic person, our special interest is our way into the world. It's animates us, it's where we feel safe. It's how we meet people, it's how we will socialize. And that includes for young kids who might be obsessed with looking at fans, or, like a friend of mine, their kid was obsessed with learning about toilets for a year, you know, yeah, that was hard.

 

But it passed. In the meantime, like that was how he was orienting. And it's that same wiring that as you get older, links you into special interests that, like become your social world and become the thing you want to do. I mean, for me, climate activism was a special interest. Hurray. And it's important to say that special interests don't have to serve a greater good to have inherent value, just like somebody in a wheelchair, like needs their wheelchair, and it doesn't matter if anyone else's life is better because of it. So an autistic person, like we need our special interests, and we need access to them and time with them. So rest, sending special interests and sensory accommodations, whether that's like letting yourself eat the same food every day, because that's how you can tolerate eating, or wearing headphones or sensory seeking, like my son needs big jumping and loud music, to help him regulate, but 20 years in therapy, presenting with a lot of autistic traits that, you know, we didn't put together meant that nobody recommended any one of those four things to me. And it took this discovery and finding artistic community to go I can get my user manual, so to speak, and that's why it matters.

 

 When did you it was just last December and but I had spin deep diving into artistic community and culture for the sake of my son for a year and a half. And hey, I just did so when i Deep Dive I really deep dive. Yeah, so and I learned there like one of my skills. That is thanks to my artistic wiring, all my disabilities are artistic, all of my skill sets are artistic. It's not like there's the disability part of me and the non disabled, it's just all how my brain is. So one of my artistic skills is learn and then teach back. So it's only been since December, but this is one of the things I'm really good at.

 

And what happened was I was trying to write an essay that urge parents and teachers to listen to autistic adults when caring for autistic children, because that's not the MO mostly people that listen to doctors. It makes sense. I mean, great. We should listen to that. There's like I'm very, very much on the side of like science and, you know, medical wisdom. But sometimes the medical world lags a little bit behind the understanding of a social group, like, how homosexuality was in the DSM, you know, has a mental illness. So we know that that's not true. There's something like that with autism, it's not a perfect parallel, but there's something like that, in that there is a lot more richness to the culture of what it means to be autistic than the narrow medicalized view of it. Again, when I say disclaimer, like that is not at all a perfect, parallel. So anyway, here I am deep diving into autistic culture, online through Facebook groups through memoir. And I'm like, Man, I sure resonate a lot with all of this. And here I am spending every night curled in my son's therapy, swaying feeling pretty good. But hey, I did well in school, I make eye contact, I don't seem to be disabled in the way my son is disabled.

 

So I'm not interested probably. And I kind of wrote it off. And then I sat down and tried to write this essay, and just kept trying to speak as an autistic adult. And it was like I kept wanting to write from the perspective of someone who couldn't be an expert talking to parents who are not autistic about their kids experience, because I've shared their brain wiring. And I was like, Wait a minute. And then I just looked up, late diagnosed autistic woman and found out, found this whole list of 200 traits, I had 180 of them. Then I took some more tests online and was like, oh, oh, this is not subtle.

 

 Like, this is not subtle at all. And all of a sudden, everything made sense. I told my husband and part of me expected him to be like, what, that's crazy. And his entire face, just like his eyes got wide, his jaw dropped. And it was like, Oh, my God, our entire lives make sense now? Well, so I'm pursuing clinical diagnosis, mostly because I'm curious about the process. But I do want to say that a lot of clinical diagnoses are really, really tricky for adults, because the tests are not really designed for us, especially for people with my presentation, and especially for people for whom their intellectual abilities are more or less even across the board. And our challenges are more with self regulation and, and sensory stuff and our different information processing.

 

So I'm going to a place that specializes in a much more holistic form of diagnosis that includes writing or making art about your life story, it includes looking at your lived experience. And I think that's like, the thing I really want to say is, the DSM is about external, observable traits. But autism should be diagnosed based on internal lived experience of the person. Because we can mask I mean, some of us can, and it's a privilege to be able to, and it's also a real hazard to mental health to mask but I'm asked for years. And so external traits are not the thing.

 

Chad Ratliffe  32:56

Wow. How awesome. Yeah, it's amazing. How awesome. I remember a few things in they weren't in this category. But like when you finally realize, and make sense of something that didn't make sense. I mean, it's so relieving. It's emotional. It's spiritual. I don't know what's amazing. So I appreciate you sharing that story. I'm curious to keep up with your memoir and your diagnosis and see how that unfolds. Can you tell us what it's been like to be a parent?

 

Shoshana  33:33

Yeah, it's so unbelievably beautiful, and so unbelievably hard. The thing I did not know I was signing up for was I didn't know that I had a hidden disability because I had coped so well, externally. So becoming a mom was this Oh, my God. And this is extremely common for women. For anybody becoming a parent, I think, particularly for the gestational parent who has if they're carrying and giving birth to the baby, who don't realize that they have a disability, and then they've been like, I'll speak for myself, but I'm not really only speaking for myself or like, Okay, I'm great. I can do my job. Everybody's loves me like on this high powered career person. And then the sensory needs the sleep deprivation, the utter, I'm actually the sleep deprivation alone is so much harder for us. Because our systems are just much more easily out of whack. And so I was looking at all these other young mothers who were like, oh, yeah, like I'm barely sleeping, but like, Isn't my baby cute, and I was like, I'm barely sleeping and like, I want to die. But I can't like I'm miserable to an extent that it's so far beyond what anybody would have thought. And I love my baby so much. And it didn't look like normal postpartum depression. And it wasn't I was an artistic burnout, which is like a different thing.

 

The very beginning of motherhood was brutally hard for me and I think was hard for my baby to he's an extraordinary little human his skill sets like so many Autistics, right. So uneven because I tend to be verbose, I don't want to give like, I'm trying to try to be very concrete in the stories. So he would need like huge swings, you know, it's not like, oh, you know, the five S's and you swing your baby, this was like you have to like swing him from one end of the room to the other. And when he got upset, it was massive outbursts. And when he was happy, it was massive joy.

 

And his attention from a very young age was extraordinary. My favorite story is once for 45 minutes, I watched my six month old sit there and turn a dry, clean diaper over and over and over inspecting it. That was like, I don't know a lot about child development. Well, I think that's very common. Right? So we figured something was different. How early? Well, that was six months. I mean, we knew he was unusual. But granted, my husband and I are, we like to say if we'd had 10 biological children, the chances are maybe one of them would have been neurotypical.

 

So like, I don't know, he was very relational with us and, and makes eye contact and responded to his name. So like it, again, some of those early signs of a more classic autism presentation were missing when he was three, that he was in early intervention, in part because transitions were absolutely an utterly impossible, like getting him to stop doing what he was doing to go anywhere. And he would have meltdowns that you know, some people call tantrums. I do not. They were like baby panic attacks that could last for 45 minutes or an hour, where his rage and it's like so intense. And he was pre verbal. It just broke my heart. So he was in early intervention. COVID hit math, you know, early intervention utterly missed that he was autistic.

 

The only reason that we caught the autism identity as early as he did, which was when he was three and a half is that he was in a preschool. And the preschool is like so your kiddo is like running around when everyone else is seated and and I was like, Oh, he's just bored. And they're like, I think he's sensory seeking. Maybe go check out an occupational therapist. And I was like, Oh my God, I didn't even know that the thing Tell me everything. That sounds like the most amazing thing. So absolutely love. We found an incredible it's called neurodivergent affirming occupational therapist.

 

That means she's child LED. She's not coming in with a whole bunch of goals and trying to get the kid to do the thing. She's letting the play unfold. She's listening and watching for my son if he gets scared, it's not like oh, it's okay. You can do it. It's really tuning in great, we're going to do something else. How do you find safety in your body giving him language so my son and I are both hyper verbal, not every autistic person is at all of course, though, I do want to say in case any folks are listening who have non speaking autistic kids that are getting a speech language pathologist who will give your child like language instead of just buttons with pre programmed sentences is a really great gift so that they can communicate better. So anyway, we were able to give him this language we tried to give him language of like when your engine is too high when your engine is too low, meaning if he's overexcited are appears like too sluggish. But he just like the grown up words have regulated and dysregulated. Interesting. Yeah, so he thrived in OT. And then he began to display more like externally observable autistic traits, like wanting us to read the calendar to him as a bedtime story.

 

That kind of repetitive you know, being able to just say the same thing over and over and just find it hysterical every time. We essentially have cracked the code of his sensory system, meaning we understood what sensory needs he has it where he's like hypersensitive to certain touches, but he's hypo sensitive to proprioception, which is, a lot of autistics are meeting we like deep touch to help ground our bodies in space. We understood that. And still, these meltdowns were happening. And every transition was still tricky. And that's where we kind of get to the next part of the story.

 

Chad Ratliffe  38:50

Okay, how did you move through your dark times were you able to evolve from the dark spaces, the dark clouds of early child development, I

 

Shoshana  39:01

mean, that like the early postpartum stuff was extremely hard for me. And honestly, the only things that helped me were sleep and getting the right medication once I was able to switch. I wish I had known more about stims, then. But when you're an autistic burnout, the things that you got to do are rest, do whatever stems are soothing and safe for you and spend time with your special interests. So for me at that point, that was my baby, so I just wanted to be with him. I didn't want to be working and being able to pull back on work, which I know not everyone can do. But I imagine that many of your listeners have had to do you know, even if it didn't even seem remotely possible financially, so I pulled back on work, and that's how I got through that really dark time.

 

The other really tricky part has been lately where my kiddo burned out really badly in public school. This is where we can talk about PDA which is so my child is autistic with a particular nervous system disability that can co occur often with autism, but it's not the Same as autism. And it's called PDA. And the classic thing It stands for is pathological demand avoidance. But we prefer to call it pervasive drive for autonomy, in part because the demand avoidance, again, here's like this medicalized thing. The demand avoidance is just the external, observable behavior.

 

 But it in and of itself is not the problem. The problem is that your child or you, there's adult PDS, because you don't grow out of it have an overactive amygdala, in the back of your brain, there's a thing that is firing off that your life is in danger, if you experience a lack of autonomy, or a direct demand, and that's the struggle, so the demand avoidance, so it can look like a child just I mean, just not doing what a parent asks them to do, or, you know, having total flexibility or having like absolute meltdowns, when you don't have the right popsicle in the house, whatever it is.

 

It's like our lives were a minefield of panic triggers for our child. And we didn't understand why. Because we had his sensory needs met. And essentially, it was just through the parent grapevine that I heard of this thing called PDA, and I looked it up and was like, Oh, that just describes my kiddo to a tee. And, and this is why everything is so hard, his whole nervous system is in fight, flight or freeze almost all the time. Well, if you can imagine the stress that that a child is under, and even with us, and my husband and I are like, extremely, I mean, we were already parenting with this collaborative approach with really respecting what he was saying, like not we're not power over parents, we're very much like in that culture of like collaborating with your kid and understanding that they have legitimate needs and all their behaviors, communication, we were already doing that.

 

 And it was still extraordinarily hard, you know, all the more so for family cultures, where a parent like children have to listen or else and then these PDA errs can end up in cycles of trauma and abuse for a lot of their lives. Because putting a PDA kid in a room, when they're panicking, like what it looks like they're acting out, but they're actually panicking. So if you put if you isolate a child, in that instance, it just adds to the trauma. And of course, we're all doing the best we can as parents, this is a little known neurology that isn't like now people are figuring it out.

 

So once I had this name for it and realized the mistakes that we had made, given his wiring, and he burned out at school, he had to he got away gotten a new teacher, the teacher was really like top down, these are their behaviors that are okay, these are behaviors that aren't not super relational. And he's just stopped being able to tolerate school, but could not separate from me would have been massive, violent panic if I had, so my life abruptly changed. And instead of having a part time career, and a kid in school, I had a child in a mental health crisis at home full time, who could not tolerate me leaving the room. And this was back in April.

 

And I was like, Okay, well, like I understand autism, I understand. I'm autistic understand, he's autistic, I got the stimming and special interest things down. This is something else again. Like this was a level of disability that I was so unprepared for. But I realized that it was the result of pushing my child's nervous system past his breaking point for five years of his life without realizing I was doing it.

 

Chad Ratliffe  43:21

What I'd like to do, and if I would have known I would have scheduled this as a part one of three shows for the sake of time, maybe you can kind of like take us through April until now and sort of like what's worked, what hasn't worked great. And then fired up another time. Yeah, I'd love that. So much. Thank you so much for this. Oh, pleasure.

 

Shoshana  43:41

And I go on at length about the things I love because info dumping is so April, we had about six weeks of him not leaving the house at all, which also meant me barely leaving the house at all. And when I say this, I mean like you would have had to bodily drag a panicking child down the stairs, all 47 pounds of him. First of all, that's inhumane, but second, like it's not even physically possible. So he's just not leaving the house because his nerve he has just been he's like he's called Uncle right? He's like, nope, my nervous system is done.

 

 I am going to sit here and watch YouTube for 12 hours a day. And thank God, I found my way to a woman named low demand Amanda. She's at low demand. Amanda on Instagram, Amanda Dykman on the internet. And she is very similar to me. She's an ordained minister. I'm an ordained rabbi. She has a really similar late diagnosed artistic profile. mom of three neurodivergent kids came up with a great book called low demand parenting recently and I was able to sign up for a course with her with other all moms of PDA kids. And together we learn this technique of low demand parenting and the essence of low demand parenting, which is helpful for so many. It's helpful for so many people because we all have nervous systems and so many of them are tapped out.

 

But it's particularly helpful for PDA kids and and other neurodivergent kids, the idea is, demands are triggering for a PDA child or PDA person. So trying to get my child to wash his hands trying to get him to sit at the table for dinner, trying to get him to put on clothes, right? All of these that would be like, Oh, whatever for a neurotypical child are literally our panic triggering to my kid. And so the conventional parenting move is I'm the parent in charge, and you need to wash your hands, like, and if you don't want to, we're just going to hold you over the sink and wash them because this is hygiene and it's COVID. And like, you have to wash your hands.

 

The low demand parenting move is okay. I have a child with a significant nervous system disability, for whom listening to my demand to wash hands is actually putting him into panic mode. So he's not going to learn at all. So how else what is my deep need? What's my deep? Why? Because Amanda would say, Okay, I want my family to be healthy. Okay, what are the chances we're actually going to get sick from my kid not washing his hands right now? Can I use hand sanitizer? Can I wait until he's discharged from school longer? Well, he wasn't at that point he was going to school, but then he wasn't what other demands? Can I drop from this child's life so that he is not living in a minefield of triggers? And how do I get my own needs met without asking too much of my child's nervous system. That's the essence of the practice, as I understand it.

 

And it doesn't mean asking nothing, because there are things especially as a kiddo comes out of burnout, that are not too much for their nervous system. So then you get to add those back and see how they do. But it has been a practice of radical low demand parenting, it has been letting go of every preconceived notion I had about what it means to be a good mother. We have no screen time limits in our house for PDA or screens are very regulating and therapeutic. They're a safe space. Our kid is currently he's five and a half, he's on Minecraft, all the time.

 

It's his special interest. He's learning coding, he's learning about the world, he's intellectually incredibly engaged. My purists mind would have been like, I don't want you on a screen for 10 hours a day. But my other option is to have a child who is anxious and panicking. And so it's a much better option to allow him to learn and grow in an environment that works for him. Understanding that likely, he will not need to be on his screen 10 hours a day, for the rest of his life. I just want to also say like that the my husband and I have financial privilege, we own our own home, and my husband has been able to like notch up his career to make up for the lost income from me.

 

And I know that that's just not true of everyone and, and that there's so much inherent injustice because of the economic hardships that go along with disability. And so I just want to acknowledge that I'm speaking from a position of privilege, but also really, like, feel that and think about it a lot every day. Because it's it's hard no matter what. But it's also a lot harder if you're scared about getting basic needs that

 

Chad Ratliffe  48:04

everything you shared, you share so eloquently. I've learned so much. I apologize for cutting it short, because I could do this for another hour or two. But I want to, you know, thank you for coming on the show. I'm sure the listeners feel the same way. It's called The tide is rising.

 

Shoshana  48:21

Right? Yeah, it's my book. Well, that won't be out for another year or so in the meantime. But I'm very excited about it because of this whole like, Yes, I'm an activist and writer, and it kind of brings everything together. But yeah, the tide is rising. We'll be out in a bit. And in the meantime, you can find me on the web at Rabbi Shoshana ra BBI SHOs, h a n a.com. And I have a mailing list and some work up there. And then I'm posting a lot on Instagram, and that's at Rabbi Shoshana on Instagram, which is a wealth of information from the hashtag, actually artistic community on there.

 

Chad Ratliffe  48:52

Awesome. I have a feeling that our listeners are going to want to learn more from you and connect more from you. So anything that will allow them to get in contact with you, if you can send me an email, we'll put it in the show notes for people to connect. And I just want to thank you for coming on wish you and your family, an amazing life that it sounds like you're having and I hope we stay connected and can kind of continue this journey together. Likewise, thank

 

Shoshana  49:18

you so much.

 

Chad Ratliffe  49:20

Yeah, thank you and until next time,

 

Shoshana  49:22

sounds wonderful. All right.

 

49:29

This concludes our show for today. And I'd like to personally thank you for spending the time with us on a topic near and dear to our hearts. If you'd like to be part of the naked parent nation and help us reach those parents that are struggling and overwhelmed. There's no better way to help them by subscribing rating and reviewing the show on iTunes. iTunes highlights the shows based on these metrics. And the more the show gets highlighted, the more opportunities people will have to be introduced to the show. Worth They can hear that message of hope, or that tip that can change everything. So follow the link in our show notes. And we hope to have you back here tomorrow where we'll do it again. From the team here at the naked parent podcast we wish you the life you've always dreamed of, and then some so long