Speaker 1: Hi, I'm your host, Doctor Lorie, and welcome to Universally Unique,
Speaker 1: Exploring the neurodiverse world of the Extraordinary. This podcast foster's
Speaker 1: curiosity and understanding about neurodiversity while empowering individuals with tools
Speaker 1: for acceptance and inclusion in classrooms, the workplace, and communities.
Speaker 1: Featuring shared stories of neurodiverse life experiences, it sheds light
Speaker 1: on navigating a world not designed for diversity. Universally Unique
Speaker 1: starts now, Hi, this is doctor Lorie. My guest today
Speaker 1: is Kelly Hall, who is the parent of a neurodivergent individual,
Speaker 1: and we're going to hear her story about her family
Speaker 1: and her son in a little bit. But first we're
Speaker 1: going to start by taking three box breaths.
Speaker 2: Count us through those.
Speaker 1: We're going to breathe in for four, hold for four,
Speaker 1: breathe out for four, hold for four breathe then so
Speaker 1: we'll start and breathe then four three two one hold,
Speaker 1: four three two one breathe out four three two one
Speaker 1: hold four three two one breathe then four three two
Speaker 1: one hold, four three two one breathe out four three
Speaker 1: two one hold for three two one breathe then four
Speaker 1: three two one hold for three two one, breathe out
Speaker 1: for three to one, hold for three to one, and
Speaker 1: a nice sigh. I like to start with with a
Speaker 1: little breathing. I think everybody kind of needs needs that.
Speaker 1: So we're had, We're like wrapping up a school year
Speaker 1: here in Connecticut, and Kelly as an administrator at middle school.
Speaker 1: So I'm highly appreciative that she was willing to join
Speaker 1: us at this time of the year. And I don't
Speaker 1: know how it's been for other folks, but it seems
Speaker 1: like in Connecticut this has been a really challenging school year.
Speaker 1: So well, like what kind of well, switch gears a
Speaker 1: little bit and focus a little bit more on on
Speaker 1: your son, Sam. So why don't you tell us a
Speaker 1: little bit about the journey that you've been on with Sam.
Speaker 2: So, thank you for having me first. I appreciate you
Speaker 2: to mind and talk about my Sam. So I think
Speaker 2: I'd like to start just with recognizing that Sammy was
Speaker 2: an answered prayer after many years of infertility where we
Speaker 2: struggled in all those negative pregnancy tests. If you've ever
Speaker 2: been through that before, it can be kind of demoralizing
Speaker 2: after a while. So from the moment that we finally
Speaker 2: had that positive pregnancy test. Until today, he has brought
Speaker 2: tremendous joy to our family. My sister actually took a
Speaker 2: picture right after I had had him, you know, kind
Speaker 2: of wheeled me out into the waiting room, and there's
Speaker 2: nothing you can see but elation. Just this incredible joy
Speaker 2: that I finally got to be a mom. And you know,
Speaker 2: meeting him and seeing him for the first time, it's
Speaker 2: it's a unique experience because you're meeting a stranger. Yes
Speaker 2: you made them, but you don't know anything about them,
Speaker 2: and you're getting to know them from the moment that
Speaker 2: they're born. And so Sammy was typically developing until about
Speaker 2: two when he had a regression. Looking back, you know,
Speaker 2: with different eyes, knowing more about neurodiversity, he definitely had
Speaker 2: some sensory issues kind of from the beginning, you know,
Speaker 2: as an infant was kind of difficult to settle. You know,
Speaker 2: I read all the books, right, we were very you know,
Speaker 2: meanwhile left enough to know that I'm going to read
Speaker 2: everything that there is. Yeah, you know, I had the
Speaker 2: sound machine, I had all of the things, which is
Speaker 2: the exact opposite. But my son needed to settle, but
Speaker 2: figured out pretty quickly that in order for him to sleep,
Speaker 2: He had to have physical contact, the room had to
Speaker 2: be dark, there couldn't be a sound machine, and I
Speaker 2: even had to slow my breathing down so that he
Speaker 2: could kind of settle and relax. So from kind of
Speaker 2: the beginning, but up until then, you know, he walked
Speaker 2: at nine and a half months, had joint attention, was
Speaker 2: looking and pointing, you know, kind of that shared experience
Speaker 2: with us. And then it was about right around when
Speaker 2: he was two, I got pregnant with my second son, Michael,
Speaker 2: and I was so sick with morning sickness and I
Speaker 2: had not experienced that with Sam. And up until that point,
Speaker 2: you know, Samy and I did everything together. You know,
Speaker 2: we were constantly playing and doing things and reading, and
Speaker 2: I was not available because I was not feeling well.
Speaker 2: And we slowly started to notice that he was changing.
Speaker 2: So what we realize now is that a lot of
Speaker 2: the language development that he had was echolalia yea and
Speaker 2: it was a repetition of words, but not necessarily assigning meaning.
Speaker 2: Now that's difficult to kind of parse out if you're
Speaker 2: not well versed in that when they're younger, but kind
Speaker 2: of saw that, but he really kind of just slipped back.
Speaker 2: We saw more kind of stimming. We didn't know it
Speaker 2: was stimming then just kind of vocal stems, and he
Speaker 2: stopped looking at us, he stopped responding to his name,
Speaker 2: and his speech really became scripting, so lines from a show,
Speaker 2: and you know, we were just noticing a difference. I think,
Speaker 2: you know, the moment that kind of really sticks out
Speaker 2: in my mind mind is too. Really, we had kind
Speaker 2: of back to back vacations. We were in Long Island
Speaker 2: with my family when I was there with my sister
Speaker 2: and he was vocally stimming, and she's like, Kelly, have
Speaker 2: you noticed Sam makes that noise a lot, you know,
Speaker 2: kind of try to prompt me. I was like, oh,
Speaker 2: that's just his fire engine noise, right, But then I
Speaker 2: started paying attention. I was like, hmm, you know, being
Speaker 2: an educator and Vince who were neurodiversion in my classes,
Speaker 2: where I was like okay. And then right after that,
Speaker 2: we flew out to South Dakota to see my dad
Speaker 2: and my stepmom, and what I realized is I was
Speaker 2: speaking for him. So my stepmother would ask him a question,
Speaker 2: or my father would ask him a question, and I
Speaker 2: was answering for him. He wasn't answering, he wasn't responding,
Speaker 2: and so it was one of those things where we
Speaker 2: were like, hmm, something's going on, and so we spoke
Speaker 2: to our pediatrician and obviously had birth to three come in. Now,
Speaker 2: I think our of that lapse was typically around two
Speaker 2: is when they start to take out that developmental checklist. Well,
Speaker 2: my doctor had a baby the same time as like
Speaker 2: that kind of was going so we kind of a
Speaker 2: fill in and the doctor rushed through it. Oh no,
Speaker 2: he's fine, literally said to me, Oh, you don't have
Speaker 2: to worry, he doesn't have autism, and kind of moved on.
Speaker 2: And that kind of was always stuck with me. I'll
Speaker 2: come back to that later. But we knew that something
Speaker 2: was going on, we just didn't know what, and so
Speaker 2: went through the birth to three process. We had, you know,
Speaker 2: evaluators come into our house, and what I will was
Speaker 2: hard was how impersonal that was. So having people come
Speaker 2: in and you know, try to get him to do
Speaker 2: things and asking us questions, but like talking to each
Speaker 2: other like we weren't in the room.
Speaker 1: Oh that's weird, isn't that isn't that?
Speaker 2: Well, what's really odd.
Speaker 1: Is that was my very first job out of college. Yes,
Speaker 1: I did birth to three and that's not how.
Speaker 2: I operated, but that's probably would imagine not knowing not so,
Speaker 2: but it was one of those things where I was like,
Speaker 2: we're here and so's he. So that kind of from
Speaker 2: from then. We can speak more about advcacy later, but
Speaker 2: that really kind of started for me where I was like,
Speaker 2: we're right here, and you know, when they gave and
Speaker 2: told us like, yes, your son has autism, I think
Speaker 2: they expected me to kind of fall to pieces in
Speaker 2: that moment. Yep, there was kind of like the everybody
Speaker 2: was bracing themselves and I just went, okay, so what
Speaker 2: do we do next? Right, Like it's it's one of
Speaker 2: those things where you know something's going on. You know
Speaker 2: your child needs more support than you're currently able to provide,
Speaker 2: and now you know how to help them better. So
Speaker 2: he's not any different. It's the same wonderful, beautiful child
Speaker 2: that I have the privilege of being a parent to,
Speaker 2: but now I know what he needs and how to
Speaker 2: help him. And so within the context of that, I
Speaker 2: went to school, of course, five months pregnant, talked to
Speaker 2: my assistant principal, my principal who I dore, and you know,
Speaker 2: it was a blubbery mass because I was hormonal, like,
Speaker 2: I don't know what to do. And my assistant principal said, listen,
Speaker 2: I have two nephews. They have autism. Early intervention is
Speaker 2: the key. Here are the things you can do. I
Speaker 2: talked to our special educators at our school who were
Speaker 2: phenomenal and kind of could lead way. I called you
Speaker 2: and I got in contact with you and kind of
Speaker 2: like so it was reaching out to those resources that
Speaker 2: I knew I had, because at that point there really
Speaker 2: wasn't a network for me to reach out to and
Speaker 2: go what do I do? How do I how do
Speaker 2: I like, where do I even start? You know, what
Speaker 2: team does he need? What what do we need to do?
Speaker 2: And so that really started the journey of figuring out
Speaker 2: more about what does it mean to have autism? What
Speaker 2: does the intervention look like? How do I start to
Speaker 2: help my child? Because you know, through the research figured
Speaker 2: out that yes, you can do something, you can help
Speaker 2: and so you know, my husband and I just said, oh,
Speaker 2: we're going to be Sammy's champions and we're going to
Speaker 2: do everything. We're not just going to do something, We're
Speaker 2: going to do everything within our power, and we're going
Speaker 2: to be a team and we're going to figure it out.
Speaker 2: What I will tell you, though, is that what makes
Speaker 2: it so difficult is other people, truly, and I've talked
Speaker 2: with other parents, you know, having a child with a disability,
Speaker 2: and I still don't like that word very much. Different ability.
Speaker 2: It can be very isolating. You know. You get like
Speaker 2: the pity invites to the birthday parties but not played it.
Speaker 2: So you get, you know, kind of the posture that's
Speaker 2: like this, and I don't really know like that, you know,
Speaker 2: it's there's not a lot of curiosity, there's a lot
Speaker 2: of avoidance, and that can be very isolating because if
Speaker 2: you don't have a child who isn't developing typically, you
Speaker 2: don't understand what that looks like every day, you know.
Speaker 2: And I can even see that difference with my other two.
Speaker 2: But we really started then, you know, we read a
Speaker 2: book An Early Start for Your Child with Autism that
Speaker 2: really helped us kind of get into his world and
Speaker 2: figure things out. We put together and started looking for
Speaker 2: ABA providers that we felt were affirming to sammy speech therapy,
Speaker 2: occupational therapy, and we did aquatic speech there. I mean,
Speaker 2: you name it. What is aquatic speech therapy. It's speech
Speaker 2: therapy in a pool. Oh okay, So yeah, So Sammy
Speaker 2: loved water. That was one of the things even when
Speaker 2: he was an infant, if he wasn't able to settle,
Speaker 2: I would go turn the shower on. I actually even
Speaker 2: had a sound on my phone that was water running,
Speaker 2: and so it would help him kind of settle. So,
Speaker 2: you know, we we did that, and I mean hours
Speaker 2: and hours of work just even in bringing speech back.
Speaker 2: We had an app that we worked with them every
Speaker 2: day where it would show somebody with an action and
Speaker 2: be like like, you know, they'd be walking, what are
Speaker 2: they doing? Walking, practicing the intonation or eventually getting to
Speaker 2: that you know three words, he is walking and practicing
Speaker 2: and doing all those things, and I you know, it
Speaker 2: was it was challenging. I think one of the biggest
Speaker 2: challenges for him was with sensory. So he had a
Speaker 2: lot of auditory sensitivities which made going outside difficult. He
Speaker 2: now told us that he can actually hear the wings
Speaker 2: flapping on an insect. Like that's how attuned his Yes,
Speaker 2: so lawnmowers, leaf blowers, you know, if a plane flew
Speaker 2: overhead that he stopped whatever he was doing. Kind of
Speaker 2: see that he was really sensitive to that going to
Speaker 2: music class once he got to elementary school. Not a
Speaker 2: fan yet didn't want to go. And I understand why
Speaker 2: eath brushing was an issue, you know.
Speaker 1: But I find it interesting though, because he had that
Speaker 1: whole attachment to bells yes, which is clearly very auditory. Yes.
Speaker 2: So what we did was, in anything, we met him
Speaker 2: where he was, we knew where he needed to be. Right.
Speaker 2: There's certain areas in which you need to push your
Speaker 2: child and you know, work on that generalization, that desensitization
Speaker 2: and figure that out. So I'll give you an example.
Speaker 2: He hated having his haircut. Not atypical. We actually go
Speaker 2: to a barber now in Meriden who specializes in giving
Speaker 2: haircuts to children on the spectrum, and so we started
Speaker 2: out with like, they have sensory scissors, so there's no buzzer.
Speaker 2: And what my husband did is he had him first
Speaker 2: start holding his electric raiser to shave his face and
Speaker 2: just hold it so we got used to the buzzy
Speaker 2: sound and then hold it up to my husband's face
Speaker 2: and then help my husband shave his face. And then eventually,
Speaker 2: you know, we were able to you know, have him
Speaker 2: hold the buzzer, and then eventually I started giving him haircuts,
Speaker 2: just a buzz cut, not a barber, and then over
Speaker 2: time he's built up to the point where now he
Speaker 2: can go to the barber. He has to ask for
Speaker 2: breaks and he can do that, but just something simple
Speaker 2: that way, where it was like, this is a life skill.
Speaker 2: He needs to be able to do that. The only
Speaker 2: other area that he really struggled with was eating. He
Speaker 2: had pretty limited eating. It got to the point where
Speaker 2: he was down to ten foods total that were packaging
Speaker 2: brand specific, so if one of them was like this
Speaker 2: little like Earth's Best, like peach mango pouch, and they
Speaker 2: changed the packaging and he wouldn't need it anymore. So
Speaker 2: we had taken him to weekly food therapy to try
Speaker 2: to work on that, and we just really weren't seeing
Speaker 2: that progress. And our speech therapist recommended an ABA based
Speaker 2: intensive food therapy, and I think that that was one
Speaker 2: of the hardest things for me as a parent, because
Speaker 2: what that entailed was it was five days and you
Speaker 2: had a food specialist that came to our home. We
Speaker 2: had three meals a day, no snacking, no gluten, no
Speaker 2: dairy because they're inflammatory, and it was every single meal
Speaker 2: had to be different, so it had to be a fruit,
Speaker 2: a vegetable, a starch, and some sort of protein, but
Speaker 2: it couldn't be prepared the same and it was different
Speaker 2: for every single meal for every single day until the
Speaker 2: last day when you had a celebration meal of the
Speaker 2: things that he tried that he liked, and that was
Speaker 2: kind of there. What was difficult about that was if
Speaker 2: he didn't eat, he had to wait for the next meal.
Speaker 2: And I really really struggled with that because it's that
Speaker 2: knowing it's what's best for him, and is this what's
Speaker 2: right and going through all of that it was difficult,
Speaker 2: but also knowing that I didn't want my son to
Speaker 2: end up on a feeding tube, and that was the
Speaker 2: direction that we were headed in. And our food specialist
Speaker 2: was awesome, Miss Jodie. She actually ended up working with
Speaker 2: us after one of our regular ABA therapists, and you know,
Speaker 2: within the context of that, he did the food chaining,
Speaker 2: so touching it to his lips, you know, smelling it,
Speaker 2: putting in his mouth, chewing, We went through the whole thing.
Speaker 2: I think he actually progressed faster because he had done
Speaker 2: food therapy prior, but by the end of the week,
Speaker 2: he was eating all the food groups and he had
Speaker 2: never eaten meat and was eating meat, and now I
Speaker 2: can't feed the child. I think he grew like three
Speaker 2: inches in two months, so he was finally getting the
Speaker 2: things that he needs. So it's those moments of is
Speaker 2: this what's right and sometimes really having to center yourself
Speaker 2: and I know what, this is what's best for my child,
Speaker 2: and he's going to get there and kind of go.
Speaker 2: And it was fun days.
Speaker 1: It wasn't like five weeks, you know, I think since
Speaker 1: it was a condensed period of time. Quite honestly, no
Speaker 1: one has died from not eating for five days, even
Speaker 1: if he had completely refused everything. But I know many
Speaker 1: of the individuals that I've worked with on the autism
Speaker 1: spectrum had such limited foods that they were literally there
Speaker 1: was no there was no nutrition. I had one kiddo.
Speaker 1: At one point we used to joke that he had
Speaker 1: a white diet. He only ate food that was white.
Speaker 1: He ate rice, he ate noodles, he ate vanilla yogurt,
Speaker 1: and ate bagels and marshmallows. I think that was it,
Speaker 1: And I mean we had to teach him how to
Speaker 1: eat other stuff. We figured out he liked chocolate milk.
Speaker 1: So good man, he took a bite of one kind
Speaker 1: of food that he didn't particularly like, we got a
Speaker 1: sip of chocolate milk, and then we finally got him
Speaker 1: to eat other things. I don't think he ever really
Speaker 1: liked any of those other things, but he ate it
Speaker 1: for chocolate milk. So at least he had a better
Speaker 1: diet time for a ton. But you know, it's hard
Speaker 1: to watch and you know, to feel like, oh well
Speaker 1: that's not you don't like this, but you know, for
Speaker 1: health reasons in the long term, it's really important, you know.
Speaker 1: So if he decides that you know, he doesn't like
Speaker 1: broccoli but hilly green beans, then that we can go
Speaker 1: with that.
Speaker 2: Yeah, so now we have you know, many fruits, all vegetable,
Speaker 2: hilly carrots, you know, a bunch of reads and know
Speaker 2: everything with ketchup. I think we should have bought stock
Speaker 2: and ketchup. That's his favorite thing. But it's just like,
Speaker 2: you know, it's it's one of those things where you
Speaker 2: know when you're operating from a place of empathy and
Speaker 2: understanding but also knowing what's best for your child. I
Speaker 2: think that it's very easy to over accommodate because you
Speaker 2: know you're coming from a kind of an over protective place.
Speaker 2: And you know, I've said to my husband over and over, like,
Speaker 2: we cannot operate from a place of pity. When you
Speaker 2: pity someone, you're treating them as if they're less, and
Speaker 2: you make poor decisions. And I know he I believe
Speaker 2: in my son. You know, he's an amazing person, and
Speaker 2: we need to operate from a place of it's not
Speaker 2: can he, it's when will he? And how do we
Speaker 2: get him there? Yeah?
Speaker 1: And you know, giving him the chance to do a
Speaker 1: variety of things. So there may turn out to be
Speaker 1: things that he really doesn't like or doesn't do, but
Speaker 1: he's had the opportunity to learn those things. I do
Speaker 1: think I'm kind of wondering too though, whether growing up
Speaker 1: with a brother who had disabilities, who was pretty much
Speaker 1: expected to carry his own weight, so to speak, that
Speaker 1: you saw that and you saw how he thrived, so
Speaker 1: not coddling him.
Speaker 2: Yeah, that was you know, that is something that was
Speaker 2: huge in our house. And my brother's needs a very
Speaker 2: complex and it was if you're going to do what
Speaker 2: everybody else does because you can, And also just that
Speaker 2: why wouldn't we presume competence?
Speaker 1: Right?
Speaker 2: It's presum douming that you can do this, being curious
Speaker 2: if you're struggling, and then how do we help support
Speaker 2: you within the context of this and break that down
Speaker 2: to meet where you're at and move you forward. So absolutely,
Speaker 2: you know, it was always even as strange as me
Speaker 2: as a child because my brother Travis was one year
Speaker 2: and nine days younger than me, so we really very
Speaker 2: much grew up together, and I was always kind of
Speaker 2: perplexed initially about why people were treating him differently, like
Speaker 2: that's just my brother, Like what's the big deal? And
Speaker 2: my middle son is very much like that with Sammy,
Speaker 2: you know, he's about three years younger, and also being
Speaker 2: a staunch advocate when people were not kind. That was
Speaker 2: something that I grew up with too, like no, and
Speaker 2: knowing also how cruel people can be. I can remember
Speaker 2: very distinctly that he was really strong when he was younger,
Speaker 2: and he was doing pull ups in gym class and
Speaker 2: he was doing more pull ups than one of the
Speaker 2: boys who consistently picked on him, and he actually pulled
Speaker 2: my brother off the pull up bar because he didn't
Speaker 2: want him to be able to do more than he did.
Speaker 2: And I remember that and just feeling very angry. And
Speaker 2: I think that it's really easy, especially early on in
Speaker 2: this process, to operate from that place of reactivity, of protection,
Speaker 2: of wanting, you know, to almost just you know, wrap
Speaker 2: them and bubble wrap from the world. You know. I
Speaker 2: just I remember, you know, when he first was diagnosed,
Speaker 2: and I've talked to other people with children's disabilities find
Speaker 2: a similar experience. You have this completely irrational thought of like, Okay,
Speaker 2: I'm just going to move to middle of the woods, right,
Speaker 2: Like I'm going to protect them. Nobody's ever going to
Speaker 2: hurt them, and we'll just live off the grid, like
Speaker 2: I give it a barber passed up and do all
Speaker 2: of those things. And that's just not reality. You know.
Speaker 2: You have to accept the fact that although things are improving,
Speaker 2: you are very much raising your child in a world
Speaker 2: that is not made for them, and it's only beginning
Speaker 2: to attempt to start to understand them, and that someday
Speaker 2: they're going to have to be in this world without you. Yeah,
Speaker 2: and what is that going to look like for them? Yeah?
Speaker 1: And I mean you want them to get to the
Speaker 1: to be the very best that that they can be,
Speaker 1: to have the life that that they want to.
Speaker 2: Have, you know, hopefully you know, a career or a.
Speaker 1: Job that is satisfying in the you know, as independent
Speaker 1: of a life as as possible, you know. But I
Speaker 1: think you you are a staunch advocate. I think you
Speaker 1: were even you know, before Sam was born, for the
Speaker 1: students in your in your school. You've always been very
Speaker 1: attuned with the students who learned differently and found ways
Speaker 1: to reach them that I think other people perhaps might
Speaker 1: have given up on. So tell me what do you
Speaker 1: think is Samy's contextual strength? But is what area does
Speaker 1: he really excel in?
Speaker 2: So he is incredibly creative and empathetic, and so we
Speaker 2: always operate from a strengths perspective. And I operate the
Speaker 2: same way with my students at school I did in
Speaker 2: my classroom I do now as the dean and advocating
Speaker 2: for students. And it sound Sam has perfect pitch. He
Speaker 2: can hear. Like we were at music therapy this past
Speaker 2: weekend and there was this little, you know, kids piano
Speaker 2: and he was playing it and one of the music
Speaker 2: therapists was in there. He goes, oh, mom, that's a
Speaker 2: B sharp And she goes and she stops and she
Speaker 2: comes out. She hits the key goes over to piano
Speaker 2: and she's like, it is and I you know, I
Speaker 2: said to her, I'm like, I'm not musically incline. This
Speaker 2: means I don't know what that means. And she goes, well,
Speaker 2: if you go into many places, like you go into
Speaker 2: a casino or something else, they play and see because
Speaker 2: it's lovely and it's nice be Sharpe's one of the
Speaker 2: hardest things. If it was a piano, it would be
Speaker 2: all black keys except for one, so it's really difficult
Speaker 2: to identify. And she's like, and he knew it right away.
Speaker 2: She's like, I didn't learn that until like my second
Speaker 2: master's degree. So like he has all of those things.
Speaker 2: He loves animation, he loves folly artistry. So he will
Speaker 2: listen to a sound effect to go play around the
Speaker 2: stuff in his room and he'll make it sound exactly
Speaker 2: the same because he just he hears something and he's
Speaker 2: able to kind of repeat that and go that's his dream.
Speaker 2: He wants to work in animation, he wants to work
Speaker 2: in sound effects, and he's really gifted in that. And
Speaker 2: the other piece of it, too is Sammy has always
Speaker 2: been incredible, incredibly empathetic, almost to a point of fault.
Speaker 1: You know.
Speaker 2: We joke when we first started teaching about feelings, he
Speaker 2: only wanted to talk about happy. He don't want to
Speaker 2: hear about anything else. And we had this feelings book
Speaker 2: that had these very expressive faces, and as soon as
Speaker 2: he got to the sad one the first time you
Speaker 2: read it, that book went flying across the room, right,
Speaker 2: and he was like, I don't want to deal with
Speaker 2: that because for him, he immediately when he sees sad
Speaker 2: like he's very he thinks in pictures, so it makes
Speaker 2: him think of every single experience that he's ever had
Speaker 2: that was sad, and it all just kind of floods in.
Speaker 2: So he has learned to communicate that, he has learned
Speaker 2: to regulate that through a lot of different interventions. But
Speaker 2: he's able to empathize with other people and has a
Speaker 2: very strong sense of justice. And we really saw that
Speaker 2: come out this year. In seventh grade, they studied the Holocaust.
Speaker 2: They did dystopian novels, which he really did not like,
Speaker 2: as well as he read like The Librarian of Auschwitz,
Speaker 2: and we had some really meaningful conversations about you know,
Speaker 2: he's just like, how could people do that to each other?
Speaker 2: Why do I feel so angry at Hitler, Like I
Speaker 2: feel like, you know, I'm I want to do the
Speaker 2: things to him that he did to other people, but
Speaker 2: I know it's not right, Like why do I feel
Speaker 2: that way? And when I think about it, it makes
Speaker 2: me feel so sad. So we kind of processed all
Speaker 2: of those things, and one of the things we came
Speaker 2: to is that importance of bearing witness, right that these
Speaker 2: these things have happened. Part of our job as human
Speaker 2: beings is to bear witness. And one of the best
Speaker 2: things that we can do to honor is to live
Speaker 2: a full and complete life. And that's really kind of
Speaker 2: help him. But to think about, you know, the child
Speaker 2: at two who had essentially no spontaneous language, you know,
Speaker 2: with interventions and advocacy and getting all of the supports
Speaker 2: that he needed, now almost entering eighth grade, to be
Speaker 2: having a discussion about the librarian of Ashwitz and discussing
Speaker 2: the Holocaust, and you know, man being able to redeem himself.
Speaker 2: You know, we've we've come a really long way. And
Speaker 2: I think that that's the thing that people don't always
Speaker 2: understand is that, you know, difference not less. And Sammy
Speaker 2: really really does not like that it's autism spectrum disorder.
Speaker 2: That word disorder irks him. He said to me, Mom,
Speaker 2: they're making it sound like I have a mental illness.
Speaker 2: I am not mentally ill. And I was speaking to
Speaker 2: him about coming on to this because I wanted his
Speaker 2: permission to share his diagnosis. Yep, it's his, it's his
Speaker 2: to disclose. Is that okay with you? He set boundaries
Speaker 2: about what I am and I'm not allowed to talk about.
Speaker 2: Proud of him for doing that, But the thing that
Speaker 2: he wanted me to share, besides the fact that when
Speaker 2: he turns eighteen, he wants to come on to the
Speaker 2: podcast and star in it. By the way, okay, well
Speaker 2: that's a.
Speaker 1: Ways a way, but if I still have one, I'd
Speaker 1: be having to have me come on.
Speaker 2: Jimmy, I was laughing. I was like, I'll mention that
Speaker 2: Sam is. He doesn't like how autism is portrayed in
Speaker 2: children's animation. He brought up Daniel Tiger particularly. He said,
Speaker 2: you know, Mom, they only focus on he goes. You know,
Speaker 2: they have like a meh personality and they only have
Speaker 2: one interest and it's all about what's hard for them.
Speaker 2: It's not about them as a whole person. And He
Speaker 2: talked about how one time he had seen like an
Speaker 2: autism simulator and he goes, it was like a dystopian
Speaker 2: terror world. Mom, that's not my experience, he goes. Maybe
Speaker 2: if I'm having a meltdown, he goes, but that's not
Speaker 2: how I experience the world. People are way too focused
Speaker 2: on what is difficult for people who are neurodiverse, and
Speaker 2: not enough on who we are as people, what are
Speaker 2: our interests, what are our strengths? And so I said, okay, well,
Speaker 2: is there any show you like? He goes, yeah, love
Speaker 2: on the spectrum. Now with the caveat that we preview
Speaker 2: the shows and we let him watch what we feel
Speaker 2: is age appropriate and.
Speaker 1: Cut out the ones that are a little too well, a.
Speaker 2: Little too spicy. But he was like, they show the
Speaker 2: whole person and interest in that, you know, the strengths
Speaker 2: and they're able to do things, and that autism looks different.
Speaker 1: It does, and I think that's the part that people
Speaker 1: have a hard time with. And you know, folks say,
Speaker 1: when you've met one person with autism, you've met one
Speaker 1: person with autism, you know, And I think people don't
Speaker 1: really recognize exactly what that means, although I do kind
Speaker 1: of think, having met a lot of people with autism
Speaker 1: that usually I kind of figure it out, but they
Speaker 1: are all very different, and we have to look.
Speaker 2: At everybody as as an individual.
Speaker 1: You know. I kind of chuckled at love on the
Speaker 1: spectrum though, because I kind of liked when they like
Speaker 1: dated and they just sort of got to the point
Speaker 1: right away and you got all the crap that you
Speaker 1: like don't like about dating like out of the way
Speaker 1: in the first like five minutes, and then it didn't
Speaker 1: work out.
Speaker 2: You just got up and laughed. You know. I don't
Speaker 2: want that we.
Speaker 1: Should all date, right Why didn't we date like this
Speaker 1: when I was dating? But so I very much appreciate
Speaker 1: that he's he sent you with a message because I
Speaker 1: do think it's it's important, and it's important. I think
Speaker 1: with all people, we all come to the table with
Speaker 1: strengths and weaknesses, you know, but we have a tendency, unfortunately,
Speaker 1: to make assumptions about people who who have a particular label.
Speaker 1: Which part of that label gets your services, but part
Speaker 1: of that label also gets you some stuff that's.
Speaker 2: Not that's not great.
Speaker 1: But you might want to tell him though, if you
Speaker 1: open up the diagnostics and statistics manual the American Psychiatric Association.
Speaker 1: It has things like caffeine addiction in it and insomnia and.
Speaker 2: Some other things.
Speaker 1: So there's lots of other people with diagnoses and he
Speaker 1: knows all of them.
Speaker 2: Probably if you get in the DSM, he'll have it
Speaker 2: memorized in like a day and you're like, well and start diagnosing.
Speaker 1: You have a caffeine addiction, you have an exercise, you're
Speaker 1: afraid of spiders.
Speaker 2: Yeah, you know.
Speaker 1: So, I mean we all have something, and I think
Speaker 1: that's maybe more where the rest of us need to
Speaker 1: sort of process all of that. But I very very
Speaker 1: much appreciate you coming to share your your journey with him,
Speaker 1: and you know, he is He's just he's a he's
Speaker 1: a fascinating individual. I've been sort of, you know, fascinated,
Speaker 1: sort of watch a little little bits and pieces the
Speaker 1: glimmers of his journey along away and hopefully I will
Speaker 1: maybe get to see him in person again sometime soon.
Speaker 1: I haven't seen him in quite some time, so.
Speaker 2: He would love that. He's bigger than me now, so
Speaker 2: changed a lot since the last time he saw it.
Speaker 2: Does he have a caffeine addiction? Maybe we'll have coffee. No,
Speaker 2: he refuses to have it because he doesn't want to
Speaker 2: have a caffeine addiction. It's oh, he's very small. He
Speaker 2: asks me how much coffee I drink. He's going to
Speaker 2: be advocating for you in a different ways at all time.
Speaker 1: But what, you know, what I think he's just a
Speaker 1: remarkable you know, young he's a tween now, So yeah, yeah.
Speaker 2: Help us to my colleagues, I'm like, it's way different,
Speaker 2: you know, teaching and working with seventh graders than living
Speaker 2: with one's that's a unique experience for sure.
Speaker 1: Yeah, I'm sure, I'm sure it is. But so I
Speaker 1: very much appreciate you joining us, and I appreciate folks listening.
Speaker 1: I think hopefully people have gotten some really good information
Speaker 1: and some good thoughts about how we go out and
Speaker 1: we approach individuals that are neurodiversus.
Speaker 2: The reality is.
Speaker 1: There's probably significantly more folks out there than anyone even
Speaker 1: completely realizes.
Speaker 2: We all know at least one person, whether we realize
Speaker 2: it or not. So yes, all.
Speaker 1: Right, well, thank you so much, and thank you folks
Speaker 1: for listening, and.
Speaker 2: We will be back in a couple of weeks.
Speaker 1: Thank you, thank you for listening to universally unique exploring
Speaker 1: the neurodiverse world of the extraordinary. Join me, doctor Lorie
Speaker 1: on Transformation Talk Radio every second and fourth Monday at
Speaker 1: eleven thirty Pacific.
Speaker 2: Time, as we continue to.
Speaker 1: Explore navigating the world not designed for diversity. For advocacy
Speaker 1: and support for individuals with disabilities, Let's connect. Learn more
Speaker 1: about consulting and life coaching at Noopolistaconsulting dot com is
Speaker 1: a