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Ever wonder if it’d be easier to be partnered with someone who also has ADHD (or, someone who is neurotypical)? How can you coexist no matter what the combo platter of neurodivergence? Robin, David’s neurotypical partner, and Bobby, Isabelle’s neurodivergent partner, join a relationship round table filled with practical tips on how neurotypical and neurodivergent partners can better support, communicate, and respond in key moments with one another.
---ADHD is often scapegoated within relationships. David & Isabelle are joined by David’s partner, Robin, who is neurotypical, and Isabelle’s husband, Bobby, who also has ADHD. David describes his friendship with Noah, who also has ADHD, and how the two of them have different and complementary needs and accommodation styles (for example, Noah likes structure and being on time, David is more accommodated by not wanting to let Noah down). How relationships could look when people are aware of what they are good at, not so good at, and that they need to work differently. This is similar to how when Bobby and Isabelle were first diagnosed, they had very different ways of experiencing ADHD and their sample size (“but wait, Isabelle’s more organized, she can’t have ADHD!”) impacted their understanding of it. David and Robin describe how Robin gives David a part of a shelf—a place where he could freely be messy and do his thing. Like spots that she, as his neurotypical partner, does not try to manage. The group goes on a tangent about cockroaches running up legs and spiders in your mouth while you sleep (see below). David also observes that Robin does not ask him to do a lot of things so when she does ask him, it feels novel and he received instant gratification for doing the task, so he’s more likely to do it (and eager to please the person he loves). This also connects to how Robin asks him to sweep or clean up crumbs (more thoroughly). Isabelle notes Robin’s warmth—and recognizes that Isabelle and Bobby both aren’t as warm to each other around this feedback. Robin points out that Isabelle (having ADHD) may not see the feedback as it goes, and instead notices the feedback when she’s already overwhelmed. Isabelle and Bobby note what they call a Great America moment (see below) and notes how she was able to observe Bobby circling around distracted, like a shark, and that she was able to see he needed a different environment to complete his tasks and was able to choose to go to Great America anyway (for herself): in short, she didn’t have to jump into the shark circling herself. David points out that children (which he does not have) are like the loveliest hedonist parrots (which Isabelle and Bobby add: are also the best thing ever). David also talks about mirror neurons and how people with ADHD can have much more active empathic responses, where they can really sync up to the moods/emotions of the people around them. As Bobby is circling like a shark, Isabelle’s mirror neurons are activated and she is syncing up, but Isabelle does not need the same level of intensity. How to know when you don’t need that level of intensity, knowing when you can’t think your way out of that circle (AKA Great American moment). Also important and hard to notice when you’ve self-stimulated yourself into some intense emotion but then your next task doesn’t need it. Hard to see yourself clearly in these escalated moments and how a partner can see you more clearly sometimes and help reflect back boundaries or what you need. And so when Isabelle syncs up to Bobby, she’s trying to soothe them both, instead of paying attention to taking a break and NOT syncing up, which will help them both. Bobby notes that podcast recording sessions helps everyone. Robin also names times when she and David need to ask for what they need to sync up (or not sync up). David will call and give her a heads up telling her he’s ‘coming in hot’ from his commute/work time, when she’s on the couch horizontal watching the Office or Park and Rec—how they try to meet them halfway. How both David and Isabelle forget their age all the time.
For more show notes, go to somethingshinypodcast.comWhy is the cockroach named Rick? For no reason, except David and Robin like alliteration.
Isabelle mentions a sacred pact between humans and bugs? Well, it’s an ancient truce predicated on the idea that if a bug is around, that’s fine, we’re on their turf, really, but if a bug is on your body without you electing to have said bug on your body, or the bug is on your bed or perhaps in the bath/shower with you, you will use whatever means necessary to remove said bug from said body/bath/shower/bed.
What is the Great America moment? Let’s say a group of people all want to go to an amazing thrill-ride packed amusement park (like Great America, a Six Flags park in scenic Gurnee, IL), but they’re waiting on one person to finish their work before they go. Instead of making the whole group miss out if that person doesn’t get their work done, you can honor both sets of needs: let the person finish their work and then also let the rest of the group go to Great America. Then circle back and plan another time to go together. The idea is that the person struggling shouldn’t feel the pressure/responsibility of everyone else’s ‘good time’ and that everyone can hold boundaries make autonomous choices that are also understanding and inclusive.
DEFINITIONS
Self esteem: is a global term that has to do with how you feel about yourself, your own sense of self-worth. One thing to consider is that with ADHD, self-esteem can be believing you're going to survive an experience: that the moment of discomfort you're experiencing will be worth it it in the future. This is hard to do when your sense of time can be two modes (now or not now). When everything feels like NOW, it's hard to believe in a later or a change or in growth. And when you believe you can do something, it dramatically increases the odds that you will actually do that thing. Self-esteem is believing that you can survive, you can do the thing, and you don't have to convince yourself of that all over again every time.
Mirror neurons: this is a very complex neurological phenomenon, that is a particular favorite of ours. When you are doing a thing, your brain fires motor neurons (eg. if you know how to ski, your brain will fire the motor fires that help you move on your skis). Mirror neurons fire when you are witnessing (or anticipating) someone else do a thing that your motor neurons do (eg. your mirror neurons fire AS IF YOU ARE SKIING, when you are watching skiing on tv). Put another way, your brain is inhibiting you from acting out what you're witnessing/anticipating, but other than that, you're copying the things you see/anticipate seeing. Think about how much we learn vicariously, through observation and then trying something you've only seen before (like a baby learning how to walk! or draw! or pretty much anything!) The more they're understood, the more we recognize that mirror neurons are also involved in recognizing emotional states and sharing your emotions with others (firing the pathways of movements we do when sad/happy/angry, etc.). Welcome to the rabbit hole, in some assorted articles below:
What we currentl...
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Everything you ever wanted to know about ADHD...continues! WOOHOO! Go back and check out Parts I & III, or start here to learn more about dopamine, how to differentiate someone with ADHD v. someone who is neurotypical, why folx with ADHD run late, and what the impacts are on school (sadly, so far, not great) when someone is labeled with ADHD and receives accommodations. The things that are easy, hard, and all the myths and misperceptions that exist about what is really not a deficit, but rather an abundance and variety of, attention. The third part of a series from David, who has lectured as an expert and advocate on this subject nationally, and assisted by Isabelle, who is eagerly sponging up the information. A neurodivergent and neurotypical blend of friends Christina, AJ, Gabe, and Isabelle's husband, Bobby, sit in to ask questions. (Part III of David’s Lecture Series)
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Isabelle & David welcome Isabelle’s husband, Bobby, and their friends, Christina, AJ, and Gabe, to continue to listen and learn from David’s tried and tested presentation on ADHD, which he normally gives to fellow clinicians (for the first and second parts of this talk, please see episode 4, All About ADHD Part I and episode 6, All About ADHD Part II). David talks about procrastination, and why it raises the stakes, thus generating more dopamine (the chemical in our brain that gives us a feeling of reward or satisfaction), which folx with ADHD are deficient in. He relates this to the idea that winning, or a win/lose condition, as something that generates dopamine: if we leave for somewhere that is 10 minutes away with 9 minutes to go, if we get there in time, we feel like we beat the clock (won). Also, as we run late to something, for example, we raise the stakes and leave so that we will run late—thus, giving us dopamine—but we’re often miserable and blaming ourselves the whole time. Miserable, and loaded with dopamine: reinforcing the behavior that we are also blaming/shaming ourselves for. How struggles with time management (guessing how long something will take or how all the pieces will fit together) make transitions and running late even harder, and how it is important for neurotypical partners and folx to know it is not done on purpose. How to differentiate (or diagnose) someone with ADHD when a lot of symptoms of ADHD also occur in neurotypical folx (like procrastination? Enjoying sex?). Most psychological diagnoses are connected to things many people experience (such as anxiety); and most humans will struggle with executive functioning skills, but all folx with ADHD will struggle with these skills (see below for a list of skills!). Furthermore, when we get into how people recognize and learn from mistakes, that’s when you see ADHD: a person with ADHD will make these mistakes a lot more often and also carry a lot more shame and self-blame for doing them because of just how often they make them. Neuropsych (short for neuropsychological testing) can help find an ADHD diagnosis but can also miss it. For example, audience member AJ names going to go to the store and seeing the coupons, but skipping the step of putting them in your pocket (ADHD)—and a pattern of this experience, over and over again (plus the “Why did I do this AGAIN!” feeling). David’s use of the Yoda voice “There is no later, only now!” Talking about the shame spiral of the pattern of this happening over and over again. Major consequences of growing up with ADHD - social and school. Folx with ADHD, if they are diagnosed as having it impact their learning (remember: ADHD is not necessarily a learning disability, it must be shown to be impacting learning), they are often tracked with lower level classes and are given accommodations to suit lower IQ students (make things easier). Dilemma there is most people with ADHD have above average IQ: with this setup, they are under stimulated in school, and also isolated and marginalized, systemically. Sharing different school experiences, from being in gifted programs to transitional programs, to having LD labels: and the validation of folx with ADHD often disliking school (especially when they receive accommodations). Seen as if you’re doing it on purpose. Especially kicks in around ages 9-10, when peers start normalizing your world v. Your family. Talking about kids will naturally accommodate themselves in school (figure out bare minimum grade, skip homework but do well on a test, for example)—but when they do this, for example, not doing homework, can be read as personal (by the teacher) or avoid the consequences.Dopamine deficiency? ADHD is often understood as neurobiological (brain) difference, that includes lower levels of dopamine, the neurotransmitter (messenger chemical) in our brain that gives us feelings of satisfaction and reward—the feeling of YOU DID IT…ahhhhhhh. Another way of viewing it is a neurotypical person has a shot-glass-sized need for dopamine and so little bits of dopamine fill it up enough to feel that satiation, whereas a person with ADHD has a pint-glass-sized need for dopamine. At times, you need a lot more dopamine and are starving for it, but at other times, you have so much dopamine it is so rewarding (and perhaps the reward feeling while eating that doughnut is actually that much greater), but it also makes it even harder to pull away or transition from getting that dopamine to not (imagine how hard it is to not keep watching a show you love or how it would feel if someone suddenly unplugged the tv). Keep in mind that dopamine is just one of the neurotransmitters doing some fun other stuff where ADHD is concerned.
DAVID’S DEFINITIONS:
ADD or Attention Deficit Disorder: is an outdated diagnostic label that also used to a serve as a marker (often perpetuating some shame and stigma) differentiating a person from someone who had ADHD or the hyperactive part of ADHD. Currently, everything is called ADHD, with the following subtypes: inattentive type (too much brakes), impulsive type (too much gas), or combined type (too much of one or the other depending on the environment someone is in). Folx diagnosed with ADD will often present as ADHD inattentive or combined subtype.
Neuropsych(ological) Testing: can be very expensive, and is one way to get an official diagnosis for ADHD (another is meeting with a licensed clinician who does a thorough social/school/work/life history combined with self-diagnosis). Neuropsych tests assess your reactions and responses to different challenges, and can be helpful in either the validation of a diagnosis or awareness in what kinds of supports/accommodation and modifications might be helpful. It should be noted that these tests are largely dependent on the examiner's evaluation, and aren't perfect and can be wrong.From the Cleveland Clinic: "A neuropsychological evaluation is a test to measure how well a person's brain is working. The abilities tested include reading, language usage, attention, learning, processing speed, reasoning, remembering, problem-solving, mood and personality and more"
this is the behavior that occurs in between the assignment of a task, and working on the task. This is waiting to the last minute, or wh...
Procrastination: (For more, see also Episode 008-Are we designed to procrastinate?) -
Saknas det avsnitt?
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Everything you ever wanted to know about ADHD...continues! WOOHOO! Go back and check out Part I, or start here to learn more about what's happening in the brain, how to use environments to cue ourselves, how debate and manufactured fights can be ways to help you focus, and more! The things that are easy, hard, and all the myths and misperceptions that exist about what is really not a deficit, but rather an abundance and variety of, attention. The second part in a series from David, who has lectured as an expert and advocate on this subject nationally, and assisted by Isabelle, who is eagerly sponging up the information. A neurodivergent and neurotypical blend of friends Christina, AJ, Gabe, and Isabelle's husband, Bobby, sit in to ask questions. (Part II of David’s Lecture Series)
---(Part II of David’s Lecture Series) Isabelle & David welcome Isabelle’s husband, Bobby, and their friends, Christina, AJ, and Gabe, to continue to listen and learn from David’s tried and tested presentation on ADHD, which he normally gives to fellow clinicians (for the first part of this talk, please see episode 4, David’s Lecture: All About ADHD!). We talk about Auditory Processing Disorder (APD) which often also exists alongside ADHD; however, they are two different things. ADHD can make you more prone to distraction when you hear sounds, no APD (see definition below). ADHD can also coexist with Autism Spectrum Disorder (ASD). David gets nerdy about how blood flow to certain parts of our brain connects to distraction, and how our environment can also cue us to shift blood flow to the forebrain (prefrontal cortex). Gabe notes that sports served as an important accommodation. David makes the comparison that it’s like having an energy bar in a video game, and if you don’t use it during your day, it will become anxious rumination at night. David and Bobby get distracted by Bobby’s audio equipment (or Bobby tweaking his audio settings) and David points out that being oppositional rewards us with dopamine. Debate as a dopamine booster. As a parent, how do you get out of power struggles. Talking about ADHD as too much gas (hyperactive) and too much brakes (inattentive); combined type is both, and environmentally cued (the more comfortable you are, the more gas; the less comfortable you are, the more brakes). What about ADHD on vacation? We can get more irritable or more chill, and it can be because we have uprooted our accommodations: the structure we have in place at home that helps us get along. So we can start to manufacture structure (including undertaking vacation-only projects, getting into a predictable arguments, reading a book in a day, etc.). When we understand how ADHD impacts us (for example, starting to write a book on vacation to cleverly avoid interactions we don’t want to have, plus building in structure…but not finishing because we didn’t factor in the response cost of it) we can work with it.
Click here for slides from David’s lecture.
How genetically loaded is ADHD?
Pretty loaded. For more on this, check out this article in Nature (prepare for science!)
On a related note, this article also points to ADHD being more of a spectrum than previously thought; as the article mentions:"Accumulating evidence from family, twin, and molecular genetic studies suggests that the disorder we know as ADHD is the extreme of a dimensional trait in the population. The dimensional nature of ADHD has wide-ranging implications. If we view ADHD as analogous to cholesterol levels, then diagnostic approaches should focus on defining the full continuum of “ADHD-traits” along with clinically meaningful thresholds for defining who does and does not need treatment and who has clinically subthreshold traits that call for careful monitoring. The dimensional nature of ADHD should also shift the debate about the increases in ADHD’s prevalence in recent years. Instead of assuming that misdiagnoses are the main explanation for the increased prevalence, perhaps researchers should explore to what extent the threshold for diagnosis has decreased over time and whether changes in the threshold are clinically sensible or not.”In other words, ADHD is part of a set of traits that live along a spectrum, and since we tend to diagnose ADHD when those traits/behaviors/experiences are read as a problem, we lump it into it’s own bag, when really it might turn out to be a neurodivergent branch of the same tree. And so those with ADHD can exist all along a spectrum, too! Hence: calling it attentional variability rather than a deficit.
DAVID’S DEFINITIONS:
Auditory Processing Disorder (APD): a hearing disorder and has to do with how the brain processes auditory information. APD can impact attention as well, but it’s not ADHD. Note: ADHD can make it harder to hear certain sounds, for example a person’s voice in a noisy setting, but the mechanism behind why it’s hard is different than APD.
Autism Spectrum Disorders (ASDs): a group of developmental differences (AKA neurodiversity or differences in the brain) that can cause increased sensitivity to stimulation, social, communication and behavioral challenges.
Prefrontal Cortex (PFC): also known as the forebrain, is a part of the brain that, through dopamine, is linked to executive functioning, or the skills (check out the list below) that help you pay attention, curb your impulses, take in memories (working memory), and play with different scenarios and outcomes (cognitive flexibility), for starters. For further reading, check out this super science-y article.
Forebrain skills that are harder for folks with ADHD (no matter the type):
Response Cost - neurological skill that helps you know the consequences of your actions later on down the road
Delay of Gratification - receiving the reward or win, well after the behavior occurs.
Black and White Thinking - believing or acting as if there are only two ways of thinking right or wrong. Black and white thinking makes it harder to see middle paths during an argument
Time and Organization Skills - knowing how long tasks will take, planning transition times into tasks, appropriately guessing how long something will take, or all parts of time and organizational skills.
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cover art by: Sol Vázquez
technical support by: Bobby Richards -
Everything you ever wanted to know about ADHD. Seriously. From what's happening in the brain, to how it's experienced day to day--the things that are easy, hard, and all the myths and misperceptions that exist about what is really not a deficit, but rather an abundance and variety of, attention. The first part in a series from David, who has lectured as an expert and advocate on this subject nationally, and assisted by Isabelle, who is eagerly sponging up the information. A neurodivergent and neurotypical blend of friends Christina, AJ, Gabe, and Isabelle's husband, Bobby, sit in to ask questions.
(Part I of David's All About ADHD Lecture Series)
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Isabelle & David welcome Isabelle’s husband, Bobby, and their friends, Christina, AJ, and Gabe, to listen and learn from David’s tried and tested presentation on ADHD, which he normally gives to fellow clinicians. ADD and ADHD are the same thing. ADHD is not a learning disability, it’s a brain difference. People with ADHD don’t automatically qualify for accommodations in schools, need to prove they are struggling hard enough. ADHD is all about the forebrain—the roses of our brain—everything that makes you, you, and makes you unique. Blood tends to flow into the forebrain when you are making decisions. For people with ADHD (see below!), being directed to do something is not doing it. You can look at a red dot, for example, just under different environmental contexts. It’s not a deficit of attention, it’s variability of attention. As you’re demanding more focus, you lose the ability to focus, unless there’s a crisis. The root word for patience is suffering. But someone with ADHD experiences much more distress (physiologically) when they are understimulated. Boredom/waiting without structure is the worst. Response cost (see definition below) makes it hard for us to know when we’re doing something that has a consequence further on down the road. The act of debating gives you dopamine. Dopamine deficiency? See more about dopamine deficiency below. Do you ever hear someone get angry when they look away from the screen (WHAT?!) It’s because they’re being starved from dopamine when you’re already starving. What elicits hyperfocus instead of distraction? The environment: safety, comfort, consistency, the person’s experience/mastery. With ADHD, they need greater levels of stimulation (hyperactive type) or structure (inattentive type) to attend? Again, ADHD is best not thought about as a deficit of attention: attention variability. We have an overabundance of attention. A neurotypical person can attend to whatever in whatever environment, and if they can’t, much easier for them to identify and advocate for what’s interfering with that (for example, “I can’t hear you, the fridge is making a weird noise!”) Whereas for someone with ADHD, it connects to self-esteem, much more difficult to ask for what you need because it makes you think you’re different or deficient or you missed the thing that’s interfering to begin with. It’s the ability to have self-esteem to advocate for the learning environment. We start to touch on ADHD and its link to Auditory Processing Disorder.To see some of David's slides from this presentation, click here (or visit somethingshinypodcast.com)
ADHD types explained through how we buy a printer we need:
inattentive type: struggles to buy the printer, doesn’t take into account the cost of a lack of a printer, buys one six months laterimpulsive type: buys two printers, means to put the other one up for sale, forgets to, sits in a corner for six monthscombination type: see above and experience BOTH, often depending on your level of mastery/comfort (more impulsive). Oh, it’s fun.Forebrain skills that are harder for folks with ADHD (no matter the type):
Response Cost: neurological skill that helps you know the consequences of your actions later on down the road
Delay of Gratification - receiving the reward or win, well after the behavior occurs.
Black and White Thinking - believing or acting as if there are only two ways of thinking right or wrong. Black and white thinking makes it harder to see middle paths during an argument
Time and Organization Skills - knowing how long tasks will take, planning transition times into tasks, appropriately guessing how long something will take, or all parts of time and organizational skills.
Dopamine deficiency? ADHD is often understood as neurobiological (brain) difference, that includes lower levels of dopamine, the neurotransmitter (messenger chemical) in our brain that gives us feelings of satisfaction and reward—the feeling of YOU DID IT…ahhhhhhh. Keep in mind that dopamine is just one of the neurotransmitters doing some fun other stuff where ADHD is concerned.
The Red Dot Study… came from a book David was reading off his colleague's bookshelf, pre-pandemic. Pandemic happened. Office closed (permanently). No memory of the author. We will keep looking for it, but in the meantime, our apologies and here is a study with similar findings: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3763932/
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Cover art by: Sol Vázquez
Technical support by: Bobby Richards
Thank you to Christina, Gabe, and AJ for being our audience -
David and Isabelle welcome Ren, a fellow therapist with ADHD, who digs into what was rough and unique about being homeschooled as a neurodivergent person. From the spaghettification-like transition to college, to the stereotypes of homeschooling as being for white Jesus-Jumper-wearing Christians (Duggar style), what it means to face things like frustrating and nonsensical busy work, a lack of structure, and learning how to study from television. Tackling questions about confidence, self-image, and Dickensonian skull-caps. Part II of a series.
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David wonders what different versions of homeschooling Ren was exposed to growing up—they describe a number of different structures, and that their family lived more on the structured side. Studies were more experiential, going to plays or museums or reading books on your own versus just listening to lectures. You’d do things based on your own pace, and it was almost entirely moms—a lot of it was birth order, the eldest kids had different experience because mom’s had more practice, and got a little more tired. Ren doesn’t want to pain too rosy a picture, it was a big struggle for many when they left the system and hit college—maybe more help with the big transition? Ren spent a lot of their first year of college depressed, going from being the ‘best’ by being a class of 1, do what I want when I want, to suddenly “you expect me to sit in this class multiple hours, multiple times a week, listening to you talk…and then do more stuff later?” Ren never had their time wasted by an authority figure, or the concept of busy work. Isabelle pictures this as a froyo shop model of education, where you get to try so many different things and combinations—a sense of autonomy and a sense of reassurance. In order to feel confident, you need to trust your experience, stealing from Good Inside with Dr. Becky. As caregivers we cut off emotional states, you can’t trust your own assessment of your own experience, and we’re coming in with a counter of “you don’t have to have that feeling,” because you don’t get a gauge for validation. Also offering empathy for Freshman-year Ren, like they saw through the Matrix and had already seen through it. Isabelle feels like the opposite of Ren—she went to school 6 days every week, she had a really old school Polish lessons on Saturdays based on the Polish school system. Isabelle is like the tame bird, while Ren feels like they were free and then were being told to go into a cage. David is realizing he would not have survived if he was Ren—the hardest thing was everything they just described, he was oppositional, he’d drag his feet at everything. David almost saw this as spaghettification, like if you’re in two places of different pressures you’ll turn into spaghetti (see below, yikes, we edited out a more detailed and graphic description, be warned if you go down this rabbit hole). Ren walked into places with no defenses, which Ren relates to colonization, "oh hi, it's the Pilgrims again." They were touch-starved because as the eldest of 6, they hadn’t gone a day without someone in their space, but they were also failing at the thing they were good at, and they were supposed to learn how to study. They learned about how people do school on tv—they’d gather up their textbooks and just sit at the library for 7 hours because that’s what studying ‘looks like.’ They dealt with it by doing the closest thing to being a home schooler, which was being a theater major. An on-ramp would’ve been nice. Isabelle wants to mention that the part they edited out about spaghettification, if you went down the rabbit hole and it's a lot and you're not alone, and maybe we just trauma bonded and yikes. There was a developmental trajectory that moved more and more into a ‘feeling more free' direction—the more BS David could do, the more autonomy he got, and so he got rewarded for doing the BS which helped him later on down the line. Isabelle wonders if Ren was learning more intrinsically v. extrinsically, because you want your own self-reference for building pride and capacity v. approval—where did this anxiety start, if for 18 years they had themselves as their own self-reference? How it can take just one awful educational experience to challenge your sense of self. Up until college, all of Ren’s anxiety was about going to Hell—after college, it switched to everything else—they are getting things wrong in a way that is invisible to me, and everybody else feels like what's going on. Everyone else has seen the same things, but they are outside the bubble, was like an alien trying to blend in. What is a Jesus jumper, you may wonder? A long denim skirt that goes to the ankle, if you think of a potato sack with a sleeplessness. On the other end of the spectrum from Ren's mom, they did not wear Jesus jumpers and let their girls go to the college, but a lot of people think of this. The home school reference for people is white and Duggar style, Jesus jumper. So Ren's identity before college was good at running the household, not being difficult, being good at school and after college they needed to find a new thing, because nobody needs them to run a household anymore and school is requiring tasks that are stupid. So they became a stage manager because that was as close to running a household, and the validation of people needing you and the structure of rehearsals and it became their new thing. David keeps hearing that there are so many people that normalize their life based on TV—it's so real, like the Norman Rockwell version of studying with a feather pen and books on a table in a library, that’s really studying. If it looks right, I'm doing it. Isabelle wonders if this is Norman Rockwell or Dickens—and the reason she suspects this, is because she was really into historical fiction, adoring the American Girl books and she was the kid that actually asked for a quill pen for her birthday, she wanted a candle, melted wax stamps, she’s into everything David is saying. It’s possible that for her for her studying that looked like this Dickensonian image may actually have been an accommodation.
Good Inside with Dr. Becky - talking about confidence
Spaghettification
Homeschool representation tends to be white and fundamentalist and wearing a Jesus Jumper (like the Duggars)-----
Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
Special Thanks to Ren for sharing their brilliance with us!
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David and Isabelle are delighted to be joined by their colleague, Ren, a fellow therapist who describes their journey to understanding their neurodivergence. From to what it was like growing up the eldest of six kids and being homeschooled until college, to how different it is to cope with our neurodivergence when we recognize that it's "for keeps," to how we have a "cartoon" of ourselves that can do it all. Covering questions about structure, how strange it is to remove the pressure of having anxiety all the time through medications and accommodations, and how White supremacy generates the myth that the world is a level or equal place for everyone. Part I of a series.
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David and Isabelle welcome their colleague and amazing friend, Ren! David is excited for Ren to share their story because they were not traditionally schooled, but were homeschooled from the second day of 1st grade. On the second day of 1st grade, a kid named Jack who had bullied them all through Kindergarten, was going to do the same thing in first grade, and their mom decided—how about we not? Also, connected to their parents not being pleased with the school system in St. Louis, and they were also evangelical Christian, which factored in. They came to their diagnosis later in life, when they were already working at the Willow Center with David and Isabelle, and their friend Robin was thinking about them being newly diagnosed, and Ren was listening going “it’s not that dramatic, that’s not ADHD?” Do they just think they have ADHD because they work with a bunch of openly neurodivergent people? Then Ren talked to Robin about it for about 12 hours and realized that they were. As part of diagnosis, people are often asked about school, and Ren was not only homeschooled, but fit the eldest daughter stereotype in that they were in charge of their own schooling. And of course their school record looks like everything is fine because they were in charge of their own progress and record. Isabelle wonders what some of the things Ren thought were “normal, not ADHD” were—what tipped them off? Ren describes that them and their friend were both people with advanced degrees, and a big history of anxiety—and the way boredom works and anxiety can serve as a way to self-medicate as an accommodation. It doesn't take three hours to stress yourself out to be able to do a task—the abstract of how you think. You’ve been working with static in your brain forever and everyone else is not doing the static? Ren has done a lot of identity work whereas this is a jacket that just fits—“I don’t have to work myself so hard to work.” David would brag “I just sat down and read the other day.” It’s incredible, I don’t have to fight to keep my eyes on one page, and then I retain it, and then I write about it. About 90% of their anxiety just went away. Isabelle names that when the anxiety is reduced so much, how does she get things done? It came before she was really conscious of accommodation strategies, it felt like she was unmasking way more rapidly than when she was conscious of it and replacing her anxiety with accommodations. It forced her to embrace all these limitations and then it made her feel icky to really face her actual limitations. Ren names that it was different when it is “for keeps” — and Isabelle used to think she had limitless potential but actually now she has to accept the page has been cut off. It serves her more to admit she can’t—but anxiety told me I could, if I just did more! Ren describes it as cartoon you—and also cartoon partner—the real person has limits, and you see yourself as a cartoon that’s limitless, and that contrast can motivate you, but also not. David wasn’t sitting in anxiety as much as shame, and the ADHD diagnosis came later in the life, and all of a sudden the world was not longer level, but had ice shelfs and ridges, and much more complicated environment, meant that he could unpack shame. But also this is how white supremacy affects all of us, the idea that the world is level is ridiculous. Ren is Black, AFAB, Queer, nonbinary, and so the concept of the world is level is not a real thing. In the 80’s and 90’s, David names that there was this whole idea that the world should be equal, mainstreaming, “you got your needs met, so you’re failing now…” and it didn’t really work. David’s bias is around creating inclusion and having all sorts of neurotypical and meurodivergent kids doing the same work with different expectations and breaking the illusion that the world is level. Ren’s way of homeschooling was the way that the schooling then applied to her other 5 siblings; they were the type A, just want to learn something. Their mom was still asleep and they woke their mom up, saying “it’s time for you to teach me something.” Their brother was diagnosed early, took their fridge apart, and Ren was reading and researching all the things. They were already at the top off the hierarchy in terms of learning, and you could tell which kids in the homeschooling group could adapt to the school environment and which kids never should be in this environment. Isabelle is curious what the homeschool environment looks like? What was the structure like? 13 year age gap between all the kids, their mom had the most executive functioning in the family—there was a list of subjects and a bunch of criteria for the subjects; she purchased textbooks, literature, and a homeschool group of a couple hundred, and they would get together and swap resources. Couple of a moms were good at music, and art, and match, and everyone would swap resources. Their transition to college was “oh God, so much being told what to do at all time.” Every year they took a state test to see what grade level they were at, and would get progress reports. Their mom worked in education her whole life, so she was not dropping standards but doing it for religious reasons. There was a vibrant community and not being penalized for wiggling. It was an evangelical Christian homeschool bubble, but nobody’s mom had the time or energy to be committed to you sitting still, they were trying to pack lunch for 8 people. For Ren, that concept of asking an authority figure for permission to move their body from place to place—this only happened on tv.
-----Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
Special Thanks to Ren for sharing their brilliance with us!
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In this hodgepodge of truth bombs, David and Isabelle cover a bit about how menopause and hormonal changes make it less rewarding to help others, how to assume your partner is doing more than you and turn tedious tasks into bigger wins, and how much we still need positive reinforcement as adults. That David and Isabelle explore the truth that in every silverware drawer there is a good spoon and a bad fork...and the return of David's beloved industrial-pack of fruit leather for a true ice cream win.
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We talk all about how kids need routine and structure and compassion and positive reinforcement, but you’re going about your life as a parent or adult, and you may want to yell “I need an adult!” And there is no one. David then names that parents beat themselves up because we didn’t do the taxes or whatever—but you just needed help. How much you need to do in a day, it is an impossible task. People that get everything done in a day are not happy. Isabelle shares that it helps her to stay busy when she’s taking care of everything all the time instead of staying present when she’s understimulated by playing with kids in activities she’s not super jazzed about (despite her kids being incredible!) What does it mean to chronically take care of everyone’s needs…and then menopause hits and suddenly, after perhaps toxically trying to take care of everyone all the time and making that where you get your sense of value from, you have to reset? This brings up all the hormonal shifts women experience throughout life—puberty, menstrual cycles, trying to conceive, pregancies, perimenopause and menopause (technically perimenopause lasts on average 3-5 years and menopause lasts on average 7-14 years, so I guess it’s a 10-20 year span depending). David names that dopamine bonds to estrogen, you will naturally feel good taking care of people, and then all of a sudden it cuts off, it’s gone—so doing the things you used to no longer provides any enjoyment and what do you do now? Acknowledging that no one talks about it and partners are left flummoxed. Isabelle is standing on her little rebounder/trampoline and almost fell off because it was hitting her that this makes so much sense but also, WTF?! Why isn’t this a part of our larger conversation? Because everywhere in medicine, we are following a history and setup that is designed to care for cis, White men and we’re missing so many people and leaving people feeling like they’re doing something wrong. In his day to day, David tries to be extra careful about what he makes other people responsible for, and actively attempts to take things off of someone else’s plate. Because he can see this affecting everyone in his life—checking his male privilege. But beyond this, it’s also that he assumes his partner is doing more than him at all times—whether this is true or not. It changes the establishing operation and puts new value onto the little things. It means because we take the hit we will do it for our team or our group member. It makes tedious tasks into being more important. As a parent you are also busy parenting yourself, you have to see yourself through things as an adult, and you practice doing it for yourself. For neurodivergent folx, we can struggle with identifying with the internal states we have or our emotions or expressing the emotion. Isabelle finds it is easier to externalize her feelings, like visualizing a little you needing things and speaking to that little you makes it easier for her to figure out what she's actually feeling and needing. Also comes from not having a bunch of fellow neurodivergent people around you sometimes, if there is no person around you to validate you, your experience gets missed--you need to get that mirrored back. It's like being a room of neurodivergent people and suddenly feeling that someone else gets how in every drawer there is a "good spoon" and a "bad fork." Isabelle deeply concurs. There are bad forks! There are good spoons! there’s a good spoon in every drawer—which leads Isabelle down the road of ice cream spades and sample spoons (go Jeni’s) — and what about ice cream scoops? David thinks we should be able to slice out our ice cream with dental floss or peel away the outside of the carton, or even have a timer system and go to town. Isabelle remembers how her friends that worked at ice cream shops would grow massive Popeye arms (just on the side they were scooping with). Her kid also showed her how to use the ice cream scoop, she’s hacking away at the ice cream scoop, it’s not dissimilar to how to watch kids pick things up—full squat to pick things up. Because of heaviness and just nature, kid let the weight of the scoop do the work and then twisted it. She has not been able to be replicate it, and it is maybe part her and part scoop that leads to this problem she has with the scoops. David believes it is still an engineering flaw. David then shares his recent ice cream invention, using his giant packs of fruit leather. Cut out like wide pizza slices of fruit leather, fill with a spoonful of ice cream, then wrap fruit leather around the ice cream. You gotta work fast because it freezes instantly...but then you can handhold your ice cream. We will totally collaborate with a listener who wants to partner with us on creating the perfect ice cream scoop. This also brings up how for David, the key to being able to wait for his fruit leather was totally forgetting about it. The best hack for delaying gratification? Forgetting you're waiting. Forgetting is way easier than remembering, actually--you skip the extra steps and accommodations you use to remember (like marking your calendar, flagging the email, writingi it down)...and voila! Distract yourself! Teflon mind (minus the hazardous chemicals).
Rocky Road to Perimenopause (Harvard Health)
Menopausal transition (NIH Institute on Aging)
Dopamine loss with estrogen loss (as in menopause)
Dopamine’s relationship to serotonin, dopamine, and glutamate
Jeni’s is an OHIO thing
The spoons mentioned are the Jeni's tasting spoons and ice cream spades; if you go to your local Jeni's or order from your specific closer shop, you can find them; they won't appear on the main Jeni's merch site.
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Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
Special Thanks to Jeni's. For our ice cream tasting spoons, spades, and flavors. Isabelle recalls the glory of your ol' sundaes...with that dark chocolate and amarena cherries and candied pecans and buttery fresh whipped cream...(sigh).
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How do you teach yourself (and/or children) how to stop, especially when you want to keep going/overcommitting/hyperfocusing? Like videogames, sugar, saying yes to everyone and being—anything addictive—how do you actually stop? David and Isabelle explore the difference between maximizing your time and actually setting reality checks for time blindness (which is real! We have FIVE MINUTES, after all…), how we experientially learn how to start/spot hyper focus things (when we have opportunity to do them), operationalizing and externalizing tasks, and digging into parenting strategies like punishments and limits (not just for parents, btw).
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It’s a dog whistle, if anyone listens to our show not on double speed, they are our friend, welcome to team shiny. Isabelle is still digesting the idea of what it means to put things down, to pause, to slow down, to ask herself “is now the time to do the thing?” And she wonders if this comes up against how rough time blindness is real. The idea that things are either now or not now. If she doesn’t do it now, when she’s thinking of it, and she has the wherewithal to do it—she’s going to forget it and not do it. She’s gotten ten messages at the same time telling her “multitasking is not great” and find a way to do one thing at a time, and in a sequence. But she does better with more stimulation, so isn’t more is better in terms of keeping more tabs open at the same time? Which David agrees, if we close a tab, we’re never going to remember about the website, we have to have tabs open—the way we see the world, and object relations. When we put things on a table, it just becomes a part of the table. You won’t notice it again until someone says something about it and you have to address it. There is an immediacy to things. David wants to rebrand what multitasking is, we have to find new ways to think of time. There was a TikTok where someone goes “5 minutes is an eternity, but 300 seconds is not an eternity” if David thought he had 300 seconds he might not do so much, but if it’s five minutes he’s going to do ten things like change jacket and switch shoes and start dishes and unload laundry. We will naturally try to maximize what we’re doing in a time frame. And the end of time is a transition—it’s really hard to stop and complete the task. The dilemma is: how many things can we do in this moment in time so we feel like we’ve maximized the 15 pounds of material in the 10 pound bag. There is a lot of starting on 18 things—but then the same thing happens, all those things in motion become part of the scenery, and then we’re stuck without the things we didn’t complete. So when we stack our time with 10 things, we lose every time because we have 5 things we don’t complete. Isabelle is into embroidery, her new hyperfixation—it’s always a loss to put it down, and it hits extra hard to stop hyperfocus. And then there's the thing where she doesn't want to do something and she has five minutes and she’s going to do so much before she gets to her doctor’s appointment. This is not dissimilar to how she habitually overcommits herself. Of course she wants to help, and it's always a yes, it’s always enthusiastic consent. But when she's faced with doing it, she feels total failure, and it connects to the thing where actually she feels like she’s failing even more. David is clarifying: one intervention is just for one person. So for David, he puts on his good day socks and thinks of something to do—so he makes a note. Then, when he has a pocket of time in his day, he looks at his list of things and picks one—he knows he cannot do them all. But then Isabelle wonders: how do you remember to only do one thing? David names that this connects to hyper focus and momentum, like when Isabelle is getting into the knitting—to which she replies, no, it is not knitting, where you count stitches, she cannot do that. This is embroidery, where you stab cloth over and over again and see results real fast. And David wonders, as an adult, you can dictate space and time to do this—but what if you wanted to do something, but you couldn’t dictate the time to do it—it would be sad making, but more than that, you’d want to do the thing MORE. Is this what happens with kids and video games? With a lot of addictive things, like candy, eating— the more rigid we are, the more we reinforce counter control, the more likely they're going to want the things we’re supposed to have. This is how kids with candy in the house don't grow up to binge on candy because it was normalized how to interact with it. This resonates with a book Isabelle has yet to read, Low Demand Parenting (see below) that connects to how limits on screen time, routines, punishments, even gentle parenting techniques that are really reflective and ask the kids to really think about their thoughts and feelings may not easily apply to neurodivergent kids—because they all emphasize self-regulation and executive functioning, which is the whole thing we’re not great at. So she just thought about the values she thought about building up relationship and confidence, you don’t have to do hard things alone, building up autonomy, if it’s kept from me and someone else is the game keeper, I never learn how to manage it though practicing. And David adds, you never get satiation, you never get ‘enough,’ you never internally experientially learn “it’s not the right amount for me,” like the tummy ache you get when you eat too much sugar. It’s also that you innately start to learn what to do when, including hyper focusing on things: it's not that you're not that you’re not allowed to do it, it’s when you do it. And you don’t have to earn it, what's the baseline you get for just being a human and it doesn’t get taken away. Never take away a coping mechanism, a self-soothing mechanism, like videogames, or books, or interacting with friends, because if you take away the coping skill as punishment you are taking away the thing you need to self-regulate, so you have less of the thing you need to be able to stop or regulate. Also, you get locked in power struggles, which with neurodivergent folk is like watching the bears eat each other, as Isabelle puts it. David names: the emphasis should not be providing consequences to make someone to do “right,” it’s how can you get someone to feel enough wins to feel good—this helps with behavior change. If punishment works, it only works with that reinforcer (aka with that person). You don't learn to not do the thing in general, you learn to not do the thing with that person. Or like larger rules, a family David knows would tell the kid “don’t touch, it’s hot and dangerous!” And that became the thing they'd say when something was dangerous “that’s hot!” And then when it came time for the kid to actually test the boundaries they felt like they couldn't really trust what people said because things…weren’t hot. Isabelle is by no means a perfect parent. In fact, she yells, she meltdown, she shame spirals all the time—this is a thing she’s very much learning. And she’ll give herself credit that when unmasked, she is pretty direct and blunt, and takes away the mystery and just names the thing and the context for the thing, like swearing. This makes her think of swearing and her dear friend who is neurodivergent, who delivers data on a thing with maximum warmth and bluntness. This is something she wishes would visit her when she’s doing too much: “Dear, that's impossible. Pick one thing.”
Low Demand Parenting by Amanda Diekman
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Why is it that I have 1000 planners/calendars/whiteboards and still forget stuff all the time? It’s not you, it’s them: they don’t ask you to attend to them, they are passive things that don’t ask you to attend to them. David and Isabelle dig into why voice assistants (like Amazon’s Alexa, Google Assistant, Apple’s Siri) are a potentially useful neurodivergent accommodation strategy—and no judgment if you value your privacy above the outsourcing your working memory. Covering visual timers, what to avoid if you’re setting up a reminder program, and the power of a slow clap.
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Isabelle does not like to be scheduling, she likes to have scheduled. She does not like to holiday, she likes to have had a holiday season. During the recent holiday break, it was a structureless day, the kids were home, Bobby was working, and Isabelle was in one room all day, and realized how much of her executive functioning short circuited, and also how much her memory is reliant upon changing rooms, and sequences of physical actions, all of which were missing because everyone was on break and out of routine. So she found a cheap system for a voice assistant. And it has been game changing for her family. It doesn't have to live inside her head, the routines, the rhythms. There is an external nag doing the nagging for her and the rest of the family. She wonders why all her planners and lists and things don’t do it but this voice assistant does? David explains that it’s because it comes to you, you don’t have to go to it to get the information. Unless it exploded or fired out papers into the world, you have to attend to it to be reminded. It’s a partner in executive functioning. Instead of having to outsource it to your partner so much. You can program skills, sequences of actions, routines, etc. Kids are learning a whole sequence but I don’t have to teach them all the time. A lot of people ask us for parenting help, and we can talk about all the strategies to do to change behavior. The most important thing you can do is notice when they’re doing something good. When it tells them to do the thing, and they do this thing, you get to come in and celebrate them and notice it. This is a big gift it has given Isabelle and her family: instead of interacting around a stress point, and we get frustrated with the system instead of with each other. You can program it to applaud, and it has a feature where you get it to slow clap, and Isabelle names they have a legit slow clap in the house, and the kids love it. What you’re seeing is why this works, it is a legit intervention. Those kinds of systems are not always helpful for people. Isabelle learned the hard way that it was left on storytelling for too long and wild and they had to wrangle in a more soothing bedtime routine. But as David reminds us, if you’re not listening to it as it reminds you, you will learn to never listen to it. Same as with a visual timer, you have to keep yourself to it, because otherwise you are learning to ignore. Isabelle has a certain feature where she has to answer a question to a reminder, the beeping doesn’t go away unless you interact with it. Also, setting up timers with music, setting environmental cues through music and setting up an ambience with parts of their routine. David never uses timers, because he only uses them when it’s go-time. He’s a person who really values privacy. It’s an emotional battle, unless you’ve gone through the options to change your phone settings, they are listening to it. The different options are essentially a whiteboard that speaks to you, a diary that buzzes after you, a friend that doesn’t forget—you do have those resources if you don’t have this device. This is also so you know you can find options that aren’t digital—but be careful of overly depending on people, because dependency breeds aggression, and that is one of the things about these robot overlords, are you can be as dependent as you want on them and be as aggressive as you want to be and it doesn’t hurt a person. When kids get frustrated with it, or I get frustrated with it, it’s happening to an object rather than to yourself, or someone else. Isabelle casts no judgment on those who choose privacy over these devices, because she tried one out a few years back and she was very much against it, it felt creepy to her. She didn’t really explore it or work with it. The thing that changed her minds was the realization of how much of the working memory and routine and reminders this offloads, the difference is it’s not on her to remember. So she’s like “go ahead and sell me all the dog food, because it's worth it.” David is a good person, he’s not worried about the things it finds out about me…so it would sell me the fruit leather? But it might be so clever it would question if David really wants 4 cases of 500 of them. So David decides he would NEVER get one because he doesn’t.
What is Bluey?
Isabelle notes: Brace yourself, this show is powerful and not just for kids/parents/caregivers of kids. 7 minute episodes with brilliant writing and solid visuals all teaching you how to be a human modeled by cartoon dogs. Special ND note: Many fans argue that the shows titular character is a ND tribe member (I welcome her with open arms); there is more overt mention in the episode “Army," which features a character named Jack (who continues on in the show) who many argue represents a neurodivergent kid—to watch him find connection and confidence is pretty incredible....OH THE FEELS.
----Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
Special Thanks to Bluey. Best show that sums up real life for kids (and grownups) with humor, compassion, and just plain brilliance. Watch “Flat Pack.”
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Isabelle struggles with the idea of doing 'little yucks' because her to-do list is endless, she never stops, and the demands on her feel endless--how can you even think about what you need or stop to rest without feeling guilty/lost/overwhelmed with unstructured time? David counters with a behavioral truth bomb: the power of knowing your establishing operation. What levers did the environment around you press?
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Isabelle wonders whether she even knows what a little yuck is; she turns everything else in to a big yuck, or a bunch of ‘to-do’s’ — for David, a little yuck helps the larger household, but the timing and the coping of it is just for you. Like doing the dishes so he can prep for a speech, or laundry (even though he had just done laundry) because he wants the option to wear a certain pair of pants. The same energy level existed, it was not on today’s to-do list, and he just did it to keep moving his hands. Isabelle is suffering from a blindspot here: she doesn’t really permit herself to do a little yuck, then return to something you enjoy…but she doesn’t have a to-do list anymore? That feels impossible, she doesn’t know how to not to-do list. David describes how he doesn’t have a written to-do list, it’s connected to a day off physical routine and he calls a friend and then goes for it. But for his to-do list on his day off, when he didn’t have a bunch of things he had to do. He held back from going off the rails and doing too much, he actually held back and stuck to his easy-level plans. Isabelle describes how she does not like to cook or bake, but if she can do it at her leisure, then she enjoys it. She embraces doing it without pressure and she doesn’t feel the chore of it. But the load of things she has to do feels endless, she has never carved out the time where there is nothing for her to do…she doesn’t have the experience of time where something is not expected of her, or she doesn’t expect it of herself. David’s boat is privileged in that he doesn’t have kids and he is not a super person. He is very aware of how much time is taken from someone around childcare, he sees parents doing everything, and doing everything you need or everything your child needs, you can’t really do both. The messages from society is “you’re not allowed to take care of you,” or “you’re supposed to take care of other people.” This feels more like a “mom” thing than a “dad” thing—but it's not accurate. When we’re talking about trying to find the little yuck in Isabelle’s life, the equation is different. For Isabelle, in her world, there are several agents of chaos that enter and are rerouted to priority, and there’s never a moment where she can’t be interrupted or distracted from whatever is happening. There isn’t enough time to feel the thought “I have a lot of energy and there’s nowhere for it to go.” She thinks of a meme she saw where a woman ushers her family out the door. And she finally has time to herself; does she sit and stare at a wall or does she panic clean? Isabelle really struggles with making a decision with what to do with her time when she doesn’t have the constant demands, the volley of little yucks stops, but then why does she choose a little yuck? David goes really complicated, with this thing called an establishing operation. The behavioral word for how a little rat, trained to run a maze, is rewarded by a drop of water; the rat loves the water and does lots of work for the water, but rats don’t naturally love water this much. So the establishing operation is to withhold water from the rat for 24 hours first: the establishing operation changes the reinforcement of the reinforcer. So the yuck meter for Isabelle is totally blown out. So you have to take into account what is the establishing operation for her—and it might be that what do you do to make this time guilt-free or how you set it up to make it yours. What can you do so you don’t feel bad for watching 3 hours when everyone gets home? That really rings a bell for Isabelle; it really connects for her around the challenge of what it means, to even sit down. She really doesn't ever sit down. She recovered from a fractured pelvis because she didn't sit enough. This means changing her relationship to resting or hitting the pause button and carving out the unique, new structure, when she is on her own, or has a lot of energy, or has the agency and privilege to exercise it. She has to change her establishing operation. David names that you have to give yourself the real reinforcement that you need, and not trick yourself into doing chores (that would normally ‘reward’ you with a different set up). Isabelle names that recent training with Hallowell and Ratey (see ADHD 2.0 book link below) is that rumination neural network in the brain is designed for creating problems, and another neural network runs when you’re not doing anything, and another neural network is task positive (you’re trying to do the thing). Now with neurotypical folx, you can flip a switch and go from one mode to another—you can choose! Like what a lot of therapy models use. But if you’re neurodivergent, the environment is what presses the levers, otherwise they’re all going at the same time. Isabelle recognized that the rumination network is always running, and how something about how she can’t switch the levers has to do with the fact that her environment for rest is not different from her environment for everything else (her home). She really needs external cue to signal to her that the thing you think you’re working with is different; she needs a solid external boundary to help with this. She needs to know when they take the water away. Otherwise she’ll keep working and not attend to herself. And she doesn’t know it changed. The rules don’t work anymore, it's not “you,” —maybe it’s everything else? Or is it maybelline?
“Maybe she’s born with it, maybe it’s maybelline.” (Commercial from the 90's: brace yourselves, this is so 90's it's almost unbearable).
Huberman lab episode on little yucks — he calls them “Micro sucks”
DEFINITIONS
Body Doubling: Someone else in the same room or within view of the person who is trying to get a task done—the other person doing the task creates the illusion of structure. In essence, a buddy is sits with you as you work on something (could be doing a task, or just quietly there, maybe giving you cues or reminders). In reference to in films, this term is used to describe a body double, or a stand in for lead actors in certain shots. Here are some basic ideas.
Establishing operation (EO): Depriving or altering the access to something to make it more enticing and rewarding. The behavioral word for how a little rat, trained to run a maze, is rewarded by a drop of water, and rat loves the water and does lots of work for the water...but rats don’t naturally love water this much. So the establishing operation is to withhold water from the rat for 24 hours first: the establishing operation changes the reinforcement of the water, makes it more enticing and more 'rewarding' for the rat.
Reiserfeiber - “Literally translated, Reisefieber means “travel fever” – but it’s not the type of sickness that keeps you ...
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Isabelle and David catch up and grapple with those moments when you have a ton of energy or anxiety or excitement, and you tackle way more and up the difficulty on your video game of life, instead of going for an easy win. The way we tend to think more is better when it comes to interventions or accommodations when actually it’s the little stuff. The power of the little yuck, and also the way we buy 4 cases of fruit leather and only later consider where we will store them.
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David is sharing how time doesn’t make sense (5 minutes v. 299 seconds=2 different things). Isabelle names how she tries to operate this way all the time or much of the time, remembering all this Team Shiny stuff, but it really is such a hard thing to acknowledge that her working memory is as poor as it is. Whaddayamean nobody moved the keys? (except past her, who forgot she moved the keys?) She gets so angry at herself, maybe now that she knows more about ADHD/attentional variability/ND — she is kinder to herself faster, but she also gets angrier. David names that anger is a path toward adaptive humor—“are you kidding me?” Can turn into a laugh moment or it can turn into berating yourself more. David had a beautiful ADHD moment. David has a bonus at his job, and what does he do with a bonus? Is it a vacation? A box of chocolates? A piece of furniture? Video game? The rule that we have is that anything labelled like this is getting a treat. Bonus or treat yo’self. David decides he’s going to get the best fruit leather than exists, and he decides to order it. First thought: This is excellent, this is funny. Second thought: I can’t wait to tell everyone about this, this is so cool. Third thought: Wait a minute—how much space does this much fruit leather take up? Fourth thought: Does it go bad? Fifth thought: Does it need to be refrigerated? My cats won’t get into it….What did I just do to myself? He is excited and terrified about much fruit leather. He minimizes his impulsivity. What shipping option did he pick? No idea. It doesn’t say what kind of shipping. It reminds Isabelle of how fascinated she is by a ‘lifetime supply’ prize of things: how much is a lifetime supply? Like a steady supply? All at once? How much did you buy exactly…are we talking, pounds? David got 4 cases, so he could pick the flavors. Isabelle-that might be an elementary school’s summer camp order. She thinks you could polish this off, using her kids as a baseline. Will he keep enjoying fruit leather 100 fruit leathers in? David knows that we don’t enjoy the next bite as much as the first, it does wear off. He’s not going to Golem them, he’s going to share the fruit leathers. The last time he had this thought, it happened with Jordan almonds. But they also break people’s teeth and not everyone likes them. Isabelle is delighted because every Polish baby shower and wedding shower, and it was just little baggies of them. Isabelle throws in three fun food facts: frying food is originally to preserve the food without the refrigeration, so fried food, it keeps longer. When you coat something in sugar, or in a salt, it keeps longer. Isabelle also thinks about learning what is the first thing to put on a cut? David responds…not hydrogen peroxide or alcohol, and Isabelle learned that doing that messes with the skin barrier because you scrub away all the good stuff, its then more likely to get infected. Which is shocking, because you'd think more is better. David *names that that’s why soap works: it’s the bubbles! And the friction! That makes soap work. THIS MORE IS BETTER is something we see in clinical work all the time. People throw in so many ADHD interventions, and it fails, and actually…less is more. Like simple things, like where you put your phone at night. Isabelle’s metaphor of late is the idea that we often do all or nothing, but we get bored with playing the video game at easy, and instead of upping the difficulty to medium, we think we have to make it extremely hard, and then you die right away, and you get extremely frustrated and then you quit the game. Here’s Isabelle’s boring task: she needs to go through the kids clothes. What does she do, she then signs up for three consignment sales and figure out delivery dates, and then it raises the anti, and it makes her feel like she’s doing something, but she overwhelms her stimulus load, and then passes her sweet spot so darn fast. David names that easy level on this game is just collecting clothes and putting them in one spot. Medium is putting them into a sort. And super hard level is taking them there and not having them in their house. David notices that people don’t even see the easy options. And then Isabelle also opened three other games, to play at the same time. The more games we’re playing, the harder it is to get into a rhythm. All the interventions he knows are habits and rhythms. David doesn’t really know how to distinguish anxiety or excitement, he’s getting all excited for a party, and the settings all got to difficult. There was no easy option; everything started on difficult. Only parallel is like when you’re about to go to Disney World, everything is set to excited and anxious and difficult. And so he just started doing easy wins; normally he takes that energy and just does way too much. So he did a lot of small little things, he listened to a book and did the dishes. The weirdest thing is he actually thought he could do this, and have all this stuff get done. Part of him was surrendering to an easy mode; he didn’t think of all the things he could accomplish, but rather…what to do with this energy so future Dave will not be mad at him. Isabelle very slowly processes this. Is it like having a big to do list, but actually those things are very difficult things, very little movement, lots of executive functioning. But the awareness of “I have a ton of energy,” the practice of where is your thermostat is living; feels difficult anyway, and then where can I put this so future me is not mad at me, is like body doubling yourself. Both Isabelle and David geek out about Huberman Lab and wanting to hang out with Andrew Huberman in an encapsulated experience, how important it is for our brains to experience little yucks. Doing little sucky things throughout the day creates more good things in a day. The variation of experiences is what helps you feel good, feel the peaks of goodness. Imagine doing exactly what you want to do for 10 hours, Isabelle feels like a piece of poop—but you were getting what you wanted, but instead there’s the sneaking suspicion of impending guilt, or this isn’t how it goes in this game of life. We need the variation in order to actually feel the highs. Like imagine you took breaks and did little yucks throughout the day, and then return to your phone, you have a better day. If you have anxious or excited energy, what are the little yucks I can do with this energy while I am self-medicated (through the anxiety and excitement to do so)? Isabelle thinks about “reiserfieber”, which is a German term for exactly how you feel before a big trip. This is how Isabelle functions this way during nap time, it’s the little yucks. Or the contrast of dropping the kids off at school after 6 snow days; the contrast is what makes you appreciate things. Also pandemic shut down flashbacks. But no, David names, that’s a big yuck. This is actually about little yucsk. It’s something that’s small and not future-oriented, just asking yourself: I have energy and 10 minutes…what’s a little yuck I can do? And keep it easy. On purpose. -
In a panel recorded live in front of an audience at the 2023 Eye to Eye National Friends and Allies conference, David and Isabelle sit down with Eye to Eye co-founders David Flink and Marcus Soutra, Eye to Eye student leader Kayla and an Eye to Eye student leader’s parent Claudia to discuss what it is like to be neurodivergent—or a parent to a neurodivergent kid—across different generations. Part three of three. To learn more about Eye to Eye, visit www.eyetoeyenational.org In this part, we cover the everyone’s favorite accommodations, how to confront stigma, and what everyone would say to their littler selves.
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David (Kessler) asks: what are everyone’s favorite accommodations? For Marcus, who was stuck carrying a giant suitcase to listen to audiotapes, audiobooks were originally not his favorite. He’d get the material two weeks after everyone else and it made him stand out in a way he didn’t like and kept it secret. Then he was working with a 10 year old kid through Eye to Eye, and the kid made a mold of his ear for an art project, saying that he doesn’t read with his eyes, he reads with his ears. Now he listens to every email he receives and sends, it’s how he reads; thanks to resources like Audible.com, it’s everywhere. It’s not just about the perception of the tool, it’s about the availability of the tool. If he could travel back in time to speak to a younger version of himself, because Kessler has a button he can press to make this happen, but only for a short time, Marcus would tell himself that “you’re not broken. The system is.” (Pause for applause). Isabelle wonders if there could be a time travel sound effect and after Flink suggests a Chewbacca noise, Kessler obliges. Claudia’s favorite accommodation is asking students what they need, and listening to them about what type of structure they like. Some like more, some less, some need a quiet room, some need to get up and walk around. David asks, is this essentially giving students the agency back? She agrees. And if she could go back in time, she would tell herself “Everything is going to be okay.” (Pause for snaps galore). After a tough rock-paper-scissors round, Kayla goes next. Kayla’s favorite accommodation is speech-to-text, she’ll step out of the classroom and talk it into her phone. Going back in time, she would tell herself “don’t listen to everything your peers tell you.” (Pause for snaps). Often the hurtful words don’t have anything to do with you, they have to do with what’s going on for them, like a kid who came up to her after saying something hurtful confessing that he was just hiding his own dyslexia. The second thing she would say is “Do you. Don’t think about the way people look at you because of the accommodations you use, or the things you need to do, because at the end of the day, it’s all about making an even playing field.” Her getting extra time on a test is to level the playing field. Flink goes next and shares his least favorite accommodation was getting extra time on tests, because it was him still having to do a test poorly designed for him. As an adult, it's his favorite accommodation, because he now sees it as kindness to have extra time for how he learns and thinks. If he had a time machine, he’d tell himself: “look, you’re going to have to have a strong backbone, but keep your wishbone strong, too.” Isabelle just asks, before we ask questions, that we close the time travel loops and return to the present moment. (Cue Chewbacca noise and a small disagreement about whether Star Wars technically involves time travel). Now it’s time for questions from the audience, the first one being: How is everyone doing? Everyone is doing well, considering they just shared something so vulnerable in front of hundreds of people. Another audience member asks: How can we educate ALL our students? How can we set it up so that we don’t feel stupid or incapable? Kayla starts: building communities, like with Eye to Eye, where there is a place where you have allies and you can see people going on to do great things, like Kayla witnesses when attending the Eye to Eye conference. Claudia names that schools and teacher trainings are underfunded, and they want to learn more and be better equipped but they’re not able to afford those trainings. She also wishes for students with single parents and those who don’t have the means to get access to resources and supports, too. David names that teachers are absolutely amazing and are doing the impossible. We are working with antiquated education system; we have phones that can look up data but we still get graded on memory, v. The questions we ask; teachers get punished if students don’t fit the mold and don’t perform well, but the mold itself is out of date. What about noticing the complexity of the questions students ask, rather than what they know? Marcus wonders why did it take us so long to embrace technology? One of the things he was always told was, “Marcus, you’re not going to have a calculator everywhere you go.” Everyone freaks out. David was told “you're not going to have spellcheck everywhere you go…” Marcus wonders at the teachers who scorn their student’s use of AI, but then they go home and use it to make their lesson plans…it’s odd to see this kind of resistance always, to new technology. He references that when ink pens first came out, there was pushback that quill pens are how you should write. There was a time period in this country when left-handedness was illegal. When left-handedness was made legal, there were skyrocketing rates of left handedness, then it plateaued. He suspects we’re in a similar situation with neurodiversity, where “every single kid is being labeled with LD” and that’s not true, it's more than we’re learning more about the brain every single day, we’re decreasing the stigma as we go. Kessler wonders: who wouldn’t benefit from an individualized education plan? And from desegregation of classrooms? Having different people of different abilities doing the work, together? Flink wants to add that yes, culture change, yes to funding, but what do we do right now? Tomorrow? We are a people-powered movement and country, we can create the change we wish to see by sharing our stories and advocating for ourselves. Chloe asks: how do you combat the stigma around LD and ND within yourself, and how does it work when you’re a part of the education system and an educator? Kessler wonders in general how to address stigma—Claudia responds that as someone who identifies as neurotypical, she tries to build relationships and share her story. Kayla describes going above and beyond; she remembers how her case manager, who was in charge of her IEP, thought she should stick to a trade school and work with agriculture. Kayla’s family responded that this didn’t track with Kayla’s interests; the case manager responded with “you better get used to it, because that’s going to be the only thing she can do;” Kayla’s grandmother was LIVID, she doesn’t take anything from anybody, she told her off, she got Kayla a new case manager, she found tutor after tutor until something clicked. Kessler names how hard Kayla had to work to see a future for herself. David tackles the stigma question himself, with all of his vulnerabilities up. He has a therapist: not because he is broken, or deficient, but so that he doesn’t feel things alone. There is a shadow side to stigma: anyt...
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In a panel recorded live in front of an audience at the 2023 Eye to Eye National Friends and Allies conference, David and Isabelle sit down with Eye to Eye co-founders David Flink and Marcus Soutra, Eye to Eye student leader Kayla and an Eye to Eye student leader’s parent Claudia to discuss what it is like to be neurodivergent—or a parent to a neurodivergent kid—across different generations. Part two of a series. To learn more about Eye to Eye, visit www.eyetoeyenational.org In this part, we cover masking, loving/hating school, and what's next for the next generation.
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David Flink shares his story, where he had a family that backed him and had a lot of privileges (being a white male in this country), but he was “invited” to leave four schools. He did not have a community. He met with his first student while he was in college, despite their neurodivergence in common, was very different from him—single mom, Cape Verdean family—became the closest person to him. He met Marcus, and they connected about getting their meds at 3p together, and now, 25 years later, here they are. Marcus points out that people think he was always talking about his learning difference, but he wasn’t, he was going to school to become a teacher at King State college, and he was talking with David, and after he shared his experience in the classroom he was student teaching in and seeing the impact that made on the students, he said “no one is going to listen to us, we’re 22,” we both overcompensated, were so extra professional, always showing up to meeting in suits, having to convince people that they could do this. The first person he openly talked about his learning difference with was David. Isabelle jumps in with her story; daughter of Polish immigrants, rags to riches immigrant dream kind of idea, and she had no clue she was neurodivergent until her mid to late 30’s and she hadn’t felt the feeling of what it’s like to be in such a neurodivergent friendly space (with snacks, food, fidgets, people being so direct and honest!) until now, and is so grateful that Marcus and David co-created such a thing. She realizes her community is now other neurodivergent parents who are sitting in their own learning and parenting kids who may be neurodivergent and just working so hard and finding community that way. David wants to normalize what Isabelle is speaking to, which is that we tend to think neurodivergence or learning difference means struggling or hating school, and the truth is so many people realize they are neurodivergent when they lose the structure of school, when they get a new job, when they become parents. David Flink wonders, asking Kayla—we work for you—what are you seeing? What are you hopeful for? What is it like for you? She saw a lot of pull out classes, and her little brother is telling her his experience at school, and it’s a little bit better. She was not pulled out for different classes. In class supports would be helpful, but public school districts are severely underfunded—she hopes that he does not go through so much ridicule and bullying that she had to go through. He’s making genuine friendships; she didn’t have a chance to make those the same way because she was always taken out of classes and kids were too busy realizing her difference. What should we all know about Gen Z? Kayla is describing being in 5th grade, taking these standardized tests and it was on the computer, and she has to take it with the rest of the class. The upside: easier than writing on paper. The downside: everyone is done before her, and everyone is on her “c’mon Kayla, finish up the class” and it just wasn’t enough—if she had the proper accommodations, she wouldn’t have to deal with that bullying. Claudia thinks that this is going to continue to change and evolve. Her Zoomer (wait?! Is this the next generation name?!) Got early intervention and proper accommodations and is dunking in all his classes that are not easy classes. If you have parents that start with acceptance, then seek resources and accommodations for you when you’re really little, the sky is the limit. David names that generationally speaking, don’t sleep on accommodations, and effective early intervention is making a difference we weren’t even able to see before because it wasn’t a resource that was even available to earlier generations. Claudia names that each person’s unique potential and style of intelligence is different, but this sets someone up to live up to their unique greatest potential, whatever that is. Isabelle jumps in with the idea that it’s also a systemic thing, to recognize (as author Julie (see show notes) put it in a talk earlier at the conference) that Gen Z is the first generation of students to even have social emotional learning standards as a part of their curriculum, we’re now seeing the changes because it’s not just on parents to nail it, it’s the larger change that has to happen to a culture through awareness. Marcus names that this cultural change always takes longer than you think it will; when they were first starting Eye to Eye 25 years ago, they were referencing studies just completed by Marshall Raskin about what helped kids with LD to help them launch into adulthood—metacognition, social emotional skills—and David and Marcus were trying to develop an art curriculum that would develop that for students. This was a foreign concept in 2002, and there was a big push for them to “tutor.” They had been tutored, and tutoring means “fixing,” and dyslexia needs “fixing,” and the great book “Overcoming Dyslexia” had just been written (not so great title), and it was awful. Turns out tutoring someone who can’t read by someone who can’t really read is a bad idea. But social emotional learning—BOOM. Changes everything. So they were doing this forever ago, and it’s still something they have to advocate for. It takes generations to make these changes. When David (Kessler) started working with Eye to Eye, he would ask a room full of people “who here has a learning difference” and people would reluctantly barely raise their arms, v. Now- now people own it and they talk about ableism sucking and what can we do to fight society, and… students who know they’re neurodiverse it’s a big difference Kayla sees. She also knows that her school setting matters. She is in a private school for high school, and people who know they have an LD and are proud of it, while her peers in public schools haven’t had the same supports and staff who are also ND modeling it for them. She goes to her teachers at the beginning of the school year, and she advocates for what she needs, and her teachers self-disclose their own ND to her. David describes: kids that aren’t shamed feel better about it. We can’t really learn with shame. Kayla also describes how she has to keep advocating for herself, teachers don't really know what you need and you keep having to explain and name your accommodations.
Julie Lythcott-Haims - OI speaker and author of "How to Raise an Adult" and "Your Turn: How to Be an Adult"
To learn more about Eye to Eye, visit www.eyetoeyenational.org
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Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
Special Thanks to our amazing panelists: Marcus Soutra, David Flink, Kayla Dumas, and Claudia Bouchacourt for their courage, enthusiasm, and willingness to be vulnerable and real.
Also, so grateful for everyone at Eye to Eye National: Sabrina Odigie (Eye to Eye Executive Assistant)... -
In a panel recorded live in front of an audience at the 2023 Eye to Eye National Friends and Allies conference, David and Isabelle sit down with Eye to Eye co-founders David Flink and Marcus Soutra, Eye to Eye student leader Kayla and an Eye to Eye student leader’s parent Claudia to discuss what it is like to be neurodivergent—or a parent to a neurodivergent kid—across different generations. Part one of a series. To learn more about Eye to Eye, visit www.eyetoeyenational.org. In this part we cover how we have moved from the margins to a neurodivergent culture of our own.
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David introduces this live panel and that we’re all here to talk about neurodiversity across generations. There is this potato that came up in Ireland, called lumpers—exploded the population, everyone grew these yummier, bigger potatoes. But a Spanish galleon brought mold that took out only the Lumpers—when we lose diversity, we had the Irish Potato Famine. Throughout the generations we’ve had different pressures to keep or lose different parts of ourselves. Beginning with a cheesy icebreaker, the panelists introduce themselves - David Flink (co-founder of Eye to Eye National), (he/him), Zennial (born between 1979-1981), and ice cream. Claudia (she/her), Gen X, French fries. Marcus Soutra, elder millennial (remembers dial up sounds and getting one song downloaded during dinner time), French fries. Kayla (she/her), Gen Z (no knowledge of dial up sound), French fries and ice cream together. David (Kessler, SSPOD co-host, he/him), Zennial, French fries. Isabelle (Richards, SSPOD co-host, she/her), elder Millenial and the original AIM Dizzabelle (with no numbers), specifically Five Guys cajun spice fries with strawberry shake. When did you or your loved one first identify as neurodivergent? Kayla shares that she was a premie baby, and already qualified for early intervention, then when she went through the public school system, she realized she learned differently then the rest of her peers, it took more time to get information, spell things differently, kids start to pick at you. Her family went back and forth with the school district to get her properly tested, and it was a battle, but finally, in the 7th grade, she was diagnosed with dyslexia and dyslcalculia, but her family always knew. How did you family react to your diagnosis? Kayla’s family were totally fine, it wasn’t completely shocking, her uncle and grandfather both had dyslexia, and her grandmother immediately knew because they were high school sweethearts, and she’d help him with his homework, so she saw the signs and immediately knew. Marcus was identified in 3rd grade, sort of the “classic” story, first with dyslexia and then with ADHD. Everybody reading looked like a magic trick that he just didn’t know how to do. His family reacted in a complicated way, they weren’t sure how he would react to the label, his mom has been identified with dyslexia since, and she was fearful of that label, because in her generation, she was labelled “dumb” and “stupid,’ because she didn’t have the luxury that Marcus had of having dyslexia and ADHD identified. When Marcus first heard the word dyslexia, it was from his 4th grade classmate, Karen, who was the one woke Karen (poor Karens everywhere, btw), when they were grouped together in a reading group together. Marcus thought it didn’t sound good, and that was when his mom first talked to him about it. We’re starting to see the differences in how boomer parents reacted to these diagnoses. Claudia noticed that something was different about her son when he was a baby, and went to Dr. Google and researched, and he ended up being diagnosed with Autism Spectrum Disorder at 18 months, and has since been diagnosed with dysgraphia and dyslexia. David points out the differences in being diagnosed much earlier, and Isabelle notes that you have access to something like Google to get more information if your peers or family doesn’t have access to it. Claudia names that her generation was also prone to Googling harmful things, so she stuck to peer-reviewed, science in her research. David Flink names how different those early years of time, were for him. He is a White man in America, mom is an educator, they had some means, and he was first identified as “stupid,” long before he was identified as dyslexic. That identity still stays with him. We want to give him a big hug. There are parts of our identity that develop in the absence of information. For David, his symbol recognition disorder (form of dyslexia) was caught in 4th grade, because of his spelling, but no one caught his ADHD until he was in college. There’s a part of him that, in the absence of information, always thinks he is in trouble. And this connects to how people respond to our diagnosis. David names he hit the family jackpot, and someone else’s reality is so different. You can chart your life based on who you hang out with—it’s not talked about enough. What happened to those groups when you got your diagnosis? Marcus remembers being in a community of the “odd kids” or “bad kids” that was formed by accident, in a way. Marcus used to have to go to lunch five minutes before everyone to go to the nurse’s office to get his stimulant meds, and so all the kids who left to get their meds would end up sitting at the lunch table together. Kayla had a different experience, once she was diagnosed and her friends realized she was different, she had to let a lot of friendships go, specifically in middle school. Lots of friends weren’t supportive, though her family was. One kid in particular would say “oh, you’re going to the SpEd class” and she didn’t know what to say—they would say degrading things like “you’ll never go to college” and she was so young, she believed those things. She was bawling, hyperventilating, when she learned of her diagnosis, fearing “those kids were right.” Her mother countered this and gave her the example of the author of the “Here’s Hank” books, which helped her learn how to read—he was dyslexic, too. David points out that Kayla had to make choices in who she associated with, to discern who was a support and who was not. Claudia had a similar experience to Kayla, in that she and her son experienced a lot of exclusion; her family excludes them and they are rarely invited to events as a family. Her son was in a collaborative kindergarten, where half the students were neurodivergent or had LDs, half were not. Her son was invited to a birthday party in his class, and she RSVP’d, and it turned out his classmate was a neighbor, two doors down. They became friends and eventually friended each other on Facebook, and Claudia saw that the mom had posted “the only kid we were hoping would not RSVP is the only one who did, what is wrong with El Paso, TX?” They were also a White, military family in a predominantly hispanic area, and they got excluded a lot. It’s not funny to be marginalized and it takes so much courage for Claudia to say this because it is something we have to sit with. David Flink points out that here she is not alone, here she is with family. And we zoom out and acknowledge our large room filled with brilliant neurodivergent people in the audience, that this is part of what Eye to Eye and the Organizing Institute do, is create a safe space for neurodivergent people to come together; here we are not alone. David names the theme: of being marginalized, losing friends, feeling like you’re stupid because you have to take medicine. We all share parts of that story, it’s part of our neurodivergent culture.
Lumpers and Potato Famine
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David sits down with Eye to Eye's Alyssa Tundidor for the question and answer portion of their fireside chat. The audience members, who are young student leaders from across the country who are neurodivergent or have a learning difference, ask brilliant questions, like what is David most proud of, how do you answer someone who is pitying your neurodivergence, what do. you say when people insist "everyone has a little bit of ADHD!", and to how to share special interests with neurotypical folx. To learn more about Eye to Eye, visit www.eyetoeyenational.org
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Lee asks: David’s talked about making the world better for folks who have LDs or are ND, is there a specific moment he is proud of? David answers: there are so many, and he’s really lucky. He’ll do a rapid fire bunch of them, somebody trying a strawberry for the first time and realizing it was delicious, somebody reading a book, somebody realizing they didn’t have to sit still. Somebody realizing they were worth it and good enough. The time he was called Dr. 13 times even when he kept correcting them. The time he was able to evidence differences in someone’s education plan. The time he talked to parents to help them get their kids diagnosed appropriately, or get them to understand their kids differently. Every speaking event and having to talk to friends about where he just was. Somebody buttdialed him once, and he never listens to voicemail and the person didn’t know they were leaving a message and he hears the person saying that “David helped me understand ADHD differently.” They were talking with their friends like in a chat about what they had learned from me. That made David’s heart explode in a good way. Carly asks: people who are neurotypical use language that is harmful to the neurodivergent community, like calling them stupid, how would you address a discussion like that with someone when you understand their intentions aren’t negative—what’s the appropriate way to approach it? Let’s imagine David it’s someone relatively new in your world. With family members or loved one, it’s about creating parallels that shock them. With someone new, the most important thing is to not fight a belief but contradict it. How many times do you all talk about your neurodivergence in a good way: it doesn’t happen a lot, it’s conditioning. He got a piece of pizza, put in salad, called it a pizza taco, and everyone did it and David was like “yeah, that’s an ADHD thing.” Rebranding! And parallel examples for people to feel more of the intensity. For example, having a teacher saying “how can I get my student to feel more comfortable talking about their learning differences?” And the example: “great, how much do you weigh?” So depending on how well you know the person, throw things out there. Talking people about culture and oppression, and give people the out. People double down when you accuse them; so instead, “I know you didn’t mean to oppress a population, or be an ableist jerk, and call them stupid.” And it's really hard to see people not learn in a typical way, you give them the out. The more you combat the belief of another person, the more you entrench it. Have you ever seen people fight about how tall they are? What does it matter, and they’re getting more and more riled up. Another Carly asks: advice for seeking a therapist that supports them, especially going through transitions. Lots of language uses infantilizing examples and person first language, and therapists do this as well. One thing about therapy: you are their boss. You hire and pay them. Interview them. Ask them why they said that? We shouldn’t give therapists breaks and also don’t mistreat them. Meet with different therapists and find out who’s better. How good it feels actually talking to the person—do they listen to your expertise on neurodiversity. Do they do say “oh ADHD, that’s hard.” v. “Oh ADHD, that can be really marginalizing, how do you experience that?” One is vacant neglect, one is targeted. You are allowed to be very picky about the people you put into your life. Another participant asks: My brother is coming from DC to Northwestern and is complaining about the food-is the food at Northwestern really that bad? David names that he will have to deal with the friendliness of the midwest, and he needs to go into Evanston or go off campus to really give the food a try. The midwest nice thing can really unsettle people: why would you know that? The midwest thing is actually: Hi, how are you? They really want to know the answer. It’s a cultural thing. The food is fire, but not on campus. Check out Jeni’s ice cream, and check out Gigio’s. Another question: ADHD as a term is overused and because of that their is a fear of being dismissed—what about the pat on the head, the condescending v. The dismissing? Are those equally bad? David names that it’s probably person, what someone can’t tolerate; he can’t tolerate being infantilized, he’s not a baby, he has a beard and everything. It’s a frequency measure, whichever one you get more of is going to be worse. How do you own your own label differently: you’re modeling it for other people, they’re not modeling it for you. Finding ways to talk about it when you’re the one with the IEP and 504. Finding ways to talk about it privately with teachers, having casual conversations about how people can talk about being neurodivergent without devaluing neurodivergence. There can be a part of everyone that can be a little ADHD if they’re put in the right room or at the right moment—they can use that moment to empathize with us, or they can use that moment to destroy us. He encourages people using the empathy skills to rebrand it. And in school, when you’re talking to a teacher, apologize how the IEP law makes them do extra work. Most IEP plans make teachers work longer hours, cost the school more money, and that’s a fact, so he empathizes with that. And it gently reminds them it’s a law. Their family says that “everyone is a little ADHD or autistic!” When people try to normalize you by saying you’re like everyone else, they dehumanize you. They are getting rid of a lot of parts with you that matter. “I had a hard time picking a sandwich that one time, I’m a little ADHD, but you know how I handled that sandwich picking, I….” But “no, I get two sandwiches all the time and get buyers remorse.” They’re maybe making it a little reductionistic. How would you give advice to people who want to speak about their experiences or feel a type of guilt because it’s not as severe because someone has it worse than me? David didn't hear that because he was thinking of his cat, Blue, who needs medication. Can she ask again? How would you advise someone to not feel guilty or dramatic or fears they’re making it up? I think it’s hard to have courage. It’s really hard. People will always do things that we don’t like when we talk about these things. But how do I tolerate that energy coming back at me? How do I talk about this? People who are neurodivergent think that if it’s hard for them it’s easy for everyone else and if it’s easy for them it’s easy for everyone else, and that’s not true. When we can honor how difficult things are, you’re speaking to other people in our culture. It was really embarrassing for David to ask her to repeat that. But she is important and needs to apologize. People don’t want to acknowledge that, and David had to own that. David’s dad, who was a teacher, was teaching him how to spell piece v. The word peace—what’s wrong with our language? So he had him write each word... -
David sits down with Eye to Eye's Alyssa Tundidor for a fireside chat. Covering everything from David’s origin story, to where Something Shiny came from, to co-creating spaces safe enough for folx who are neurodivergent. To learn more about Eye to Eye, visit www.eyetoeyenational.org.
-----Alyssa Tundidor (Alyssa Tundidor is Eye to Eye's Senior Mentoring Program Coordinator--for more on Alyssa, see below!) facilitates a fireside chat for the participants of the Eye to Eye Organizing Institute (OI) at the University of Denver. David names this is the first time he is sharing his story and he is not holding a tennis ball and is actually sitting down as he tells it, and he’ll be squirming the whole time as he does it. His first memory is around his story, in 5th grade, he is the kid in school with the really messy hair, and he’d write pages and pages of stories-no one could read them, they were not spelled correctly. And David is quiet when he’s writing in the corner, but nobody cares what he writes. Fast forward to his first year of graduate school at Northwestern University, he feels like a fraud, like they shouldn’t have let him in, did they know he failed a class in high school? And he was in class learning about ADHD and classmate who ran the Eye to Eye Chapter at Reed College says “oh” — he braces himself to be ‘fixed’ or told things, and instead she says “there’s this think called project eye to eye starting where they take college students with learning skills and putting them together with students in high school. Wanna join?" His first encounter with the organization is talking to David Flint, and he asks what he has, and David shares he has symbol recognition disorder and ADHD, and David Flink goes: “Awesome!” And that’s the first time David heard someone react that way without the pity or the “good for you!” Skipping past a lot in high school, getting in trouble a lot, skipping school, all of that, he’s sitting in a room at the OI with 27 other peoples, cross-legged, throwing racket balls against the wall, he felt like he belonged for the first time in his life somewhere. He belonged before…as long as they didn’t know… whatever that “nerghhh” is. OI and Eye to Eye was the first place where he experienced he didn’t have to hide a part of himself. Alyssa had a very similar experience with the OI, she was 23, she was at Radford University, and there were 60 people. What is the story behind Something Shiny? David gives the real story, not the marketing story. He’s a person who thinks really big but doesn’t really think about the details, of course he wants to save the world, he just doesn’t know what to do next. And he was getting paid to do all these trainings on ADHD, and he realized that there’s a paywall around getting good information about ADHD. You have to have certain privilege to know someone, to have money, to get accurate information. And most people trying to put forward accurate information are selling something. And it’s hard to find somethings like this without a sales push. When we can increase the understanding of things, we can decrease suffering. Alyssa speaks about listening to the qualifier episode, and it made her feel really seen and really heard. We had real feels right there. There’s this idea you’re getting at, when we’ve experienced something in the world, we can make it better for someone that follows us. There’s a cultural piece of learning differently when we’re neurodivergent. If you are part of a neurodiverse community, it’s very very hard to grow up without neglect. The people who love you don’t know how to love you. We don’t know what we need, that never happened. You can’t neglect neglect, you have to attend to it. Asking a neurodiverse person “how do you learn?” The answers 30 years ago would be “it’s hard, and it’s good that it hurts” and we all kind of bought into that. And then, all of a sudden, it doesn’t have to hurt. It's okay to swivel in a chair and have every chair in your office be a swivel chair—it’s about speaking to the things that are very hard for us to own because we’re afraid we’re going to get rejected. When you talk about them, you feel like more of community, not less. Alyssa wants to emphasize the belonging aspect—what inspired David to make a safe space for people who are neurodivergent. Someone at work said to him: “Just so you know, it didn’t bother me at all, but your energy was really big—it didn’t bother me, but it could bother someone” — that person saw my energy, and wanted to work together. We have to take steps to work together and not mask. It’s like hiding the parts of us that don’t look like everyone else. “I read books, I sit still, over the weekend, I read books, I sat still.” There’s emotionality and there’s a task, but if the task is understanding what the book says, does it matter if I read it or listen to it? Creating safety is looking at comfort, looking at who you are, and not wearing masks. Immediately take that mask off. Alyssa names that rejection hurts so much when you’re ND, and it’s true. And we’re talking about self-esteem and a sense of worth. How do we feel worth? We’re often getting our sense of worth from other people. When you can find other roles in the world to make a difference in someone else’s life. The big secret with mentorship is reciprocal: whatever you are doing to help someone younger than you, you are giving to yourself. It comes back to you. Don’t want to let someone down, so there’s a power to making a difference to other people’s lives. Alyssa asks: when is the first time you felt accepted as an ND person? It made David accepted and valued for who he was. There’s more places in the world than Eye to Eye—he felt that with his brother, he feels that with his partner, his friends. Who you surround yourself by is so much what you believe about yourself. His friends, his partner, believed in David before he did. What made David decide to become a therapist? David started wanting to save the world that was on fire as he saw it. His own experience with therapists was: they’re not that great. He wanted to be a special education teacher that teaches history, because he wants to fix all of education and name all of the lies and change the world. So, in college, he went through all the teaching classes, and they were going through lesson planning, and he realized that he wouldn’t get to teach what he would teach. He’s TAing psych classes because they’re easy, and he doesn’t mind them. So he ended up leaving education, talked to a psych professor he was friends with, “don’t know what to do now?!” But he learned he could be the difference, and he believes every life represents the world. In front of him, there’s a galaxy, and a galaxy of stars, and for him, it’s incredibly important to save the world. He felt limited that he could only work people in education become better consumers and producers, versus showing people what they want in this world and then destroying the things that don’t matter. It’s a good mic, so he won’t mic drop. What tips would he give young people navigating the world that is not built for them? He names: this world is not built for you, this world makes things worse, and you make things better. The second we pretend it’s built for us, we are ignoring things. We know that if we take weight and shading in different spots, it makes it easier for those with dyslexia to read. Like a dyslexic font. So why isn’t every book printed like that? A neurotypical person can read that book, but now everyone else can. We sit in a world, where you have every answer you want in your pocket that can answer everything, but we’re still working a school system that asks students to remember answers and not ask questions (and he loves teachers)…so no...
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Ever shown up at a holiday meal and immediately realized with a sinking feeling- "Not again…I don't can’t eat anything here…" this episode's for you! From honoring the cook's efforts while not betraying your own needs, to recognizing the joys of chewing on pens and ice, join David and Isabelle as we embrace our sensory sensitivities and make our own neurodivergent-friendly and inclusive traditions. Check out our Holiday Survival Guide!
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David and Isabelle stare down the fast moving train of holidays and expectations that is barreling toward us right now. As we approach Thanksgiving we have a bunch of "shoulds" coming at us--we should be like everyone else and even though we have sensory issues with cars, and sounds, and people, and all that stuff. Everything from sitting still from being held hostage on a plane or in the car, or being stuck in a service or sit at a table, or eating - the sound, the food, the overstimulation, while simultaneously coupled with frustration and your routine being destroyed, and all of this at the same time. This explains why Isabelle has a lurching sense of dread approaching this time of year. The holiday dread is real. David and Isabelle have covered other aspects of holidays, like speaking with family, and the glories and pains of holiday travel, and here they are focusing on food and sensory sensitivities. Isabelle remembers how growing up she was known as a picky eater but actually there were a lot of sensory sensitivities going on. She had memories of celebrating “wigilia” (Polish Christmas Eve celebration) and sitting at a much larger table, with much more eyes on her, and as someone who only ate pretty much chicken and white rice and potatoes, she was facing down a traditional non-meat meal of 12 mostly fish-based dishes (such as pickled herring). You fast before this evening meal, and then you commence the eating. She would be lightheaded and nauseous because she’d be so hungry and would fill up on dinner rolls with butter, everyone is judging and commenting, then she lives on the high of opening presents, and then they’d go to midnight mass at midnight, and then they’d light candles and means the oxygen is rapidly leaving the area in an enclosed place and so she’d either pass out and throw up. Everyone can look back in time and find the holiday memories of “we can’t believe we did that on purpose.” We don’t make time any other time of year to have these rituals, and see each other, and it's really about connections, yet we get caught up in following these rules that don’t always work. Isabelle thinks about how for years she carried the shame around this being her fault, she’s the picky eater that would end up passing out or throwing up, but then thinks about how easy it would’ve been to provide some kind of option for her. That there are traditions and ways of keeping the meaning behind the traditions, but also making even small accommodations that can make all the difference to us. How we can always make new traditions. There’s a really hard part with food: there are people that work really hard for hours in the kitchen and they want you to try and see what you like about it and not like about it—how can we try certain things that work for us, and how can we bring our own food—like here’s my tub of Mac and cheese, there has to be a middle path. The way to be a gracious guest and host, and how as neurodivergent folks we can prefer to host because it gives us structure, she can stay on her feet, it helps her mask less. What is this about ADHD and food sensitivities? There’s a lot around taste aversion, what happens when we associate a food item with a thought in our head—like “eww, this tastes like sand” and we don’t eat sand…or boogers. To make the eating experience a lot more about the flavors they’re experiencing rather than the thought in the brain. Is it salty? Sweet? Savory? Textures? David is a texture person, there is a fine line between “this is edible” and “this makes me gag”—like bananas, one day to the next changes. Isabelle and David firmly agree on bananas being this type of thing, and Isabelle does not do overripe bananas, you make it a cooking liquid and you put it in banana bread. David also likes drinkable yogurt and he doesn’t mind it because he’s drinking it. If he’s moving his mouth hole up and down there needs to be something there to fight my mouth.” And crunching is stimulating and stress reducing. Whether we’re chewing ice or almost-cutting-the-top-of-your-mouth bread crust. Is it the act of chewing that’s stress reducing, or something crunchy is stress reducing? Isabelle notices chewy things, like gum, gummy chews, and chip crunch, or a cold crunch, she does not like it—there are special ice cubes that collapse in your mouth that shrink in your mouth. Tiny ball ices at Sonic or certain places have that. David knows chewing gum is a stimulation, and David is hazarding guesses with the crunching thing (like it’s objectively dominating something in your mouth, or you’re making progress, or it’s the sound itself)—there are a lot of parts of that that is soothing. If it’s paired with dopamine, your chocolate chip cookie crunch is paired with delight and celery crunch is a HORROR to Isabelle. David’s favorite crunch is an apple-pear crunch, or a jicama crunch. What is an apple-pear? What is it exactly? This links us to grapples (apples that taste like grapes), and cotton-candy grapes (it’s too much) and champagne grapes and boba. Isabelle loves it, and David describes how he never got boba, he just thought they were fun to launch and make stick to the things, and then years later, it was cold, and he got the boba and then he had a moment when all of a sudden, he chewed it up and was like boba. “Boba, you’re delicious!” And now he’s a full boba fan. There was a challenge to himself to experience it again. Isabelle wants to go on 800 food related tangents and realizes it might be a food related special interest. The sound of the crunch is a tiny sonic boom in your mouth. And David leans on a couch with his hand on his chin and his finger got in and he accidentally came down on his finger absentmindedly, and you can’t even pretend to bite yourself, oh my goodness, it is so painful and powerful. Every time Isabelle bites her tongue or cheek it feels like she severs her tongue. But also, why did David put his finger in his mouth accidentally? And if he put his finger in his mouth and chew it. Isabelle loved chewing pen cap (old school pic pen caps), and she’d chew on everything. She’d also chew on lollipop sticks, she chews on the cupcake wrapper, she doesn’t ingest these things and doesn’t like chewing, but she loves chewing paper and the pen cap, and it got vertical in her mouth and it sliced a line in the center of the tongue, and she still has a divet. Every single person who is listening has done something like that, or has eaten too many sour patch kids, or has eaten hot pizza too fast and burned their mouth open. This connects to masking and needing stimulation, and a little bit of clumsiness, oral gratification, and it’s important. Switching and making new fantasies for the holidays: if you have a picky eater, why don’t you make that with them and bring that with them? Don’t let the family shame you and make you thing you’re doing anything wrong. Take care of your family. Including yourself. So many of us will give kids the room to offer them to ask for what they need or give them alternatives—but we don’t model it ourselves. Grown up an...
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The second part of an illuminating conversation with David Flink and Marcus Soutra, co-founders of Eye to Eye, friends and pioneers in education equity for neurodivergent folx. The group explores how a story of neurodivergent shame and trauma can shift to feeling like the story of surviving, how the pain stays with us but the reaction of a listener can layer over it, and how we can to begin to heal old wounds. Furthermore, what does it actually mean to be cool or to be a role model people want to look up to? To learn more about Eye to Eye, visit www.eyetoeyenational.org
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Flink names that in all these schools, there’s an adult who believes that giving young people room to tell their story can change the world. This was before research supporting depressive symptoms go down, self esteem goes up, that this work works. They are saying yes to a young person—and we are the adults now, and we can say yes to a young person. The day Flink met Marcus, his life changed. They were introduced by a professor. And then they had this whole momentum when they all met—and that’s how it started rolling. There are kids right now that are hearing this message on this podcast, through Eye to Eye chapters, and it’s unprecedented, and there are all these other hidden players that make this all possible. Kessler names that the value and the meaning of the story changes when you participate in these kinds of movements, though it doesn’t change the story itself. Kessler’s story started with a sense of being a fraud and was shame based—it wasn’t until he met Flink and Marcus and everyone at Eye to Eye that he started to see the impact of his story. It changed from a fraud story to a survivor story, there was worth in that all of a sudden. We’re grown ups, we made it—when Kessler turned 40, there was this thing that he felt like “he did it! I survived! I didn't know if I was going to do this!” And now he’s one of these old ND people, and he can remember when there weren’t CDs—there’s a part of who he is that’s entrenched in meaning that wasn’t there before. Eye to Eye creates those stories—taking high school and college students with neurodivergence and pairing them with jr high students to tell their stories through art. We have to mask—may the next generation not even know what we’re talking about when we say mask. After a generation of talking about what’s right with kids, there are schools where kids don’t have to wear masks, not like they used to. This daughter who started with Eye to Eye when she was 8, and now she wears her story with pride. How different is your life, when you don’t have to wait until your adulthood to change your narrative?- The environment in and of itself, is changing the story. Isabelle names that developmentally, that junior high age range is around the time our limbic system is storing the most vivid memories then, because they are the firsts and they help us start to make sense of our identities (see "reminiscence bump" info below!). Now imagine that the message you’re getting at that crucial developmental stage is there’s something right with you, that you’re okay, that you can be yourself, and just how contagious that is in a space, not just for kids with learning differences, but also neurotypical kids, everyone at that school. And that when you then retell your story, it doesn’t alter the original experience, but it creates a layer on top of it, and you keep adding those layers upon layers—which rewires the memory. That is actually trauma work, and can only happen in relationship, where you have someone listening. The brilliance of the Eye to Eye model is that it’s deeply relational, it includes these hidden networks and built upon near peer relationships. Kessler also points out that Flink and Marcus are actually cool. These are not people you’re feeling a sense of shame around, you’re seeing them and going “how cool are they?” Marcus agrees, they're the James Dean of dyslexia. There’s a way to normalizing it, and making it okay. Flink and Marcus held hands and took the leap—early on, thinking, he was thinking: “I am professionally neurodiverse, there’s no going back”—there was a fear in the beginning, how are people going to receive this? Finding other cool people who were willing to tell their stories and keep doing it, keep doing. Early on it did not feel as cool as it did now. Flink has a thesis on Kessler’s thesis—“it is always cool to own who you are.” That's what you see when you see Eye to Eye’s young people. Kessler met them at a time when they were really lucky where they had received kids responding to them, mirroring back to them—“your story matters!” If you visit any one of their sites, people with different races, cultures, backgrounds, who are proud of their brains. Proud of themselves. Everybody deserves the right to be proud of who they are, regardless of their background and intersectional identities including neurodiversity. Would Flink and Marcus self-describe themselves as cool? Flink names that talking about trauma sits with you—it’s great to talk about problems in huge public forums. Flink, still has nightmares, including this past week, about what happened to him at school. That’s experience is what’s in front of him able to fully embrace these compliments. Kessler was complimenting something about his essence, he thinks everyone listening is cool because they’re taking a chance. He’s still working on it. He knows that an exclamation point does not go into the middle of word, but it takes something from him to make that correction, and it takes something for him to not be judged. Marcus names how much they're showing our age by using the word cool, and Marcus is a huge Neil Young fan, the song "Keep on Rocking in the Free world," the idea "there goes another kid who will never get to be cool…" there goes another kid we let go as a society, we don’t get to engage in the community, fall in love, be your full self, that’s something—that another kid made us feel validated and cool. It’s not that we set out to be cool (or Fire, or Werk..we are clearly old), it’s that there was a reaction and a response to our stories that made us feel connected and like we weren’t alone, and that changes how you feel about yourself. This makes Isabelle think of What Not To Wear (see link below) the old Bravo makeover show that while on the surface dealt with fashion faux pas, really had more to do with instilling confidence and a sense of self—and she remembers someone saying “you either wear the dress or the dress wears you” and it's like that with brains. Side note, if you can’t take the compliment at the moment, save it in your pocket for a rainy day, just hold on to it, you don’t have to let it in yet but don’t lose it either. So maybe it’s like wearing our brains instead of letting our brains wear us? Kessler sums it up: what it feels like to have a sense of confidence and mastery, what it feels like to belong, what it feels like to have a community, and matter, and have worth. It’s impossible to embody all those things and not be cool or fire or feel your worth. Kessler asks, if everything were gone tomorrow, what would Flink and Marcus want the legacy of Eye to Eye to be? Flink names that they are committed to the next 25 years as much as they’re summing up the first 25, and it boils down to it, young people are not broken. Your brain is beautiful, your story matters, and have the courage to share that with the world. Marcus adds that “no statues,” we are not designing a movement to be remembered, if they’re forgotten, it’s fine, it’s more that it was a spark that started and built up the movement—we...
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David and Isabelle are joined by David Flink and Marcus Soutra, co-founders of Eye to Eye, friends, and pioneers in education equity and empowering young neurodivergent folks to know and own their story and change the education system and world for the better. Go deep into how this youth-led movement started 25 years ago, the impacts Marcus and David have witnessed, and what it has always hinged upon: that our neurodivergent stories and culture matter and sharing them can change the lives of others for the better. To learn more about Eye to Eye, visit www.eyetoeyenational.org.
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David wonders if, given that they have already attended the Organizing Institute of Eye to Eye—and should we talk about it as if it hasn’t already happened? Or as if they are about to go…? Marcus is up for whatever, David Flink points out that this is a really choose your own adventure intro. David Kessler has been involved with Eye to Eye for years and gives an introduction. David Flink and Marcus Soutra are very important people in Kessler’s (SSPOD co-host’s) story. Flink started Project Eye to Eye twenty years ago, he’s been nominated by CNN as person of the year, he’s created a network of community around neurodivergence spanning every state. Marcus is so much around the connections and relationships of this organization, being the boots on the ground, working with so many people in this industry, talking so much about neurodiversity and ADHD in general. What made you think about making the OI, what is it for? The event is the Young Leader’s Organizing Institute (OI), first one held in Jersey City in 2005, and held every year since, including virtually through the pandemic, and young people from around the country come together and build community through their learning difference, neurodivergence, learning how to be a leader and tell their story. It’s a youth-led movement, facilitates their work throughout the year. Some are already activists, and some are new to it. Isabelle names that this is incredible, people are coming and being real and vulnerable and its truly incredible. There are chapters from over 20 states, and two students from each chapter come together and learn real tangible skills to learn how to be leaders and lead a program. Every student coming represents another 10-20 students back home. This event has allowed us to give students the skills and puts their oxygen masks on first, rather than the masking of hiding who you are. How did Flink dream about making Eye to Eye in the first place? It was co-dreaming, it was celebrating 25 years since its inception, and he stepped on this campus 25 years ago. The original version was a pretty small dream. Nobody had told him with any authenticity that there was something about his learning experience was powerful and right. He hit the teacher and family lottery, he did have people cheering him on. He wanted kids to know they’re not alone. And it wasn’t until he met Marcus, they codreamed. They had different life experiences, what would it look like if we brought people from different backgrounds, different states. We need young people from all backgrounds finding their way to love each other through learning differently, and it’s helping educate educators so they can say yes to when young people say what they need. They are 1 in 5 of all students; we need to encourage cross communication between neurotypical and neurodivergent folks. Isabelle gives feedback on what the whole conference experience was like, where there were signs, and no fear sweat, chairs with wheels, fidgets everywhere, and then when someone talks, you actually want to listen. Flink names that there’s where they started, and it was all about people saying something we needed to hear. Flink gave Kessler (SSPOD co-host) a series of vague descriptions of people that were all wandering the airport, and he was going to find them all. David didn’t shame Flink, he was on it—tracking down the people, looking for people who looked lost or had Eye to Eye gear—it became this amazing quest. It was like a Collect ‘Em All Pokemon adventure, and it was screaming and excitement and it was so much fun. David names that for the next 25 years, our environment continues to be helpful, but we are an education equity organization, we are youth driven. We’re here to set up the next generation of young people to ask for what they need and change the school systems. There’s a need for them to say what they need to say. Kessler names that trauma bonding can happen in therapy, where people go into the gory details and it's not helpful. The idea of “sharing your story” can provoke eye rolls. One of the things you first need to know is your story—talk about your story, how you got there. David felt like a fraud, the last thing he wanted to do is to tell anyone how he got there, and then Marcus lead it off by sharing his story, and as he started hearing everyone’s stories, he realized how much he wasn’t alone, he was suddenly aware he was not deficient in this group, not different in this group. Was there a story in particular that spurred this on? The idea is to make this invisible visible, make the hidden culture visible, from how we experience the trauma of school (or home, or work, or family, etc.) Marcus can identify the dyslexic person who points to the menu instead of reading the menu at dinner, and he names it for them, there's a hidden aspect to this. Marcus had never met with David, and they had never met, but 9/10 they connected on things. Marcus was running an Eye to Eye chapter after school, and working with mentors, and running the art room (where they build social/emotional skills) and the idea was the invention project. Einstein was dyslexic and he was an inventor, so think make an invention that addresses the biggest thing that trips you up. One kid said “I hate school because I get bullied for using extended time on tests,” and he created this invention called Bully Be Gone—he called them death stars—the way he was able to use art and have near peer role models help him navigate that problem. For a 19 year old, a 10 year old—it didn’t matter where we were from, the emotional experience and the ability to connect and communicate with each other. That was where it was. Isabelle wonders about David and Marcus’ meet cute—and she recognizes that bullying is a massive trauma, especially when it goes unrecognized and unacknowledged. It changes how you relate to others and yourself, and it’s this big deal thing, and you’re then able to put art, movement, expression to it because it goes beyond words, and what it means for the older kid/youth—what it means for them to do that. We all want to spare others the suffering others went through—you go into this work because you want the world to not have that, and she’s struck by the amount of healing—what happens when you change the outcome of another person’s story, and that you matter (and it’s also not your job or role to), but what it means to transmute that wound —aka trauma mastery. Marcus names that he sees this with his mentors—the first thing he says is, your story matters and it can change the life of someone else.
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To learn more about Eye to Eye, visit www.eyetoeyenational.org
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Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
Special Thanks to: Marcus Soutra and David Flink, co-founders of Eye to Eye, for their honesty and heart, Sabrina Odigie for her logistical wizardry, and Philister Lukacevic, Eye to Eye Director of Marketing and Communications for his patience and help in getting these edits and materials out there!
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Isabelle and David continue to reflect upon what it was like to experience the Eye to Eye Young Leader's Organizing Institute Conference—Isabelle describes how strange and surreal it felt to not be judged for things she’s used to having to manage and mask about; what it means to recognize that there is a part of you that goes unseen so much of the time and when you connect with it, the grief that comes. The power of recognizing you are among your particular tribe and the jarring feeling of realizing how rare it is. And also, ADHD podcaster dance offs.
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Isabelle describes how, partly due to flight delay and the tail end of a cold and such, it was only a day and a half worth of conference experience, and yet it felt very surreal—she kept asking, is this real? And on the second day, was walking around feeling like she was shaming herself for her own behavior (because normally, she would’ve registered people’s looks or reactions to her interrupting them so much, for example). And she also noticed that while she would normally push herself to engage even if she wanted to really shut down, here she felt safe taking time for herself and not engaging, and didn’t even feel the need to try to endear herself or manage relationships excessively to prevent fallout or misunderstandings. She felt very seen and understood. David names that no one in the world is used to not being judged. She wonders if this is a common experience for attendees? David describes that he hasn’t been in this alumni role before; when he was a participant, people would be up all night in the common rooms where they would be staying, someone would be crying, someone would be forming a significant partnership or breaking up with someone, and they would go to bed at 3a and wake up at 7a to do the whole thing over again. It was like being whisked down a torrent of a river without hitting any rocks along the way. To feel so fully accepted, in all your parts, not just the parts that are shiny but all the parts—the closest word to what it feels like is maybe a collective grief, and regret, and then also release. David names that people don’t see all your parts, but they see the parts you spend most of your time hiding. Having that part show up—it’s exhausting and refreshing and exhilarating to know how long that part has been hidden. As a therapist, when David diagnoses someone as neurodivergent later in life—there’s an initial, “oh my god, that makes so much sense!” And it’s followed by a “oh my god, if I had known earlier…?” You cannot grab this information without grabbing some of the grief. But it’s also so strange when you’re sitting in a room where the task is to acknowledge it. Isabelle gives the example of, going to a comicon and finding your people v. Going and finding a room full of people who are celebrating a show that was cancelled early (Firefly) and cosplaying as one specific character (Jayne) and it’s that specific and for four days straight. Or it’s like someone is playing the sports ball team and they’re wearing the opposing team’s jersey on someone, it’s like you know you’re on the same side because you’re both wearing the other team’s color. It’s the difference between finding your people under duress or outnumbered. It’s like Isabelle finding a bunch of tall women at the Denver airport and feeling oddly among her people but it’s jarring and delightful too. Isabelle wonders what David’s realization was like—he mentioned all these aspects of grieving his brother’s loss and the loss of being a part of this community in the same way, and here he came back and experienced it again. He is doing great, and he has the feeling of “put me in, coach!” He watched amazing people (like Sawyer, Chloe, for example) and seeing parts of him 10 years ago, looking up to people he thought were really great. It was this moment of feeling like everything was coming full circle and David felt an immense amount of gratitude that he could reconnect with people who were really important to him, and his partner could see what he was doing. They were participating in the ally training group and as neurotypical person, it meant so much to David to see them getting along with everyone because it wasn’t a judgment-filled place. It reminds him how important a lack of judgment means to everyone not just neurodivergent folx. He came back with a renewed sense of worth, mission, and purpose. We are trying to do this with the podcast, we are trying to destroy a stigma. And we are far from the only ones doing it, but the best podcast out there—Isabelle imagines they just challenged all these other amazing podcasters to a dance off and David names they would argue about the song choice and just end up having an amazing hangout.
To learn more about Eye to Eye, visit www.eyetoeyenational.org
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Cover Art by: Sol Vázquez
Technical Support by: Bobby Richards
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- Visa fler
