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. Welcome to Universally Unique.
Speaker 1: My guest today is Jessica Papp. Jessica is the mom
Speaker 1: of a twelve year old named Juliana who was hoping
Speaker 1: to join us today but was not able to do so,
Speaker 1: so hopefully we'll get to talk to Juliana in the future.
Speaker 1: Before we get started, we're going to do three box breaths.
Speaker 1: I will count us through that. We're going to breathe
Speaker 1: in for four, hold for four, breathe out for four,
Speaker 1: hold for four, and start again. So we'll start with
Speaker 1: one breath breathe in two three four, hold two three four,
Speaker 1: breathe out two three four, hold two three four, breathe
Speaker 1: in two three four, hold two three four breathe out
Speaker 1: two three four, hold two three four, breathe in two
Speaker 1: three four, hold two three four, read out two three four,
Speaker 1: hold two three four, finished with a nice sigh. All right,
Speaker 1: always good to take a few a few breaths. So, Jess,
Speaker 1: thank you for joining us today. And I would like
Speaker 1: basically to start if you would tell us about the
Speaker 1: journey that that you and your family and Juliana have
Speaker 1: been on.
Speaker 2: Thank you for having me.
Speaker 1: Welcome.
Speaker 2: So my daughter is twelve now, but our journey with
Speaker 2: her kind of medical issues started when she was about
Speaker 2: three to four years old. Before that point, she was
Speaker 2: just a very typical, happy, bubbly three four year old,
Speaker 2: and we noticed a really like sudden acute onset of
Speaker 2: very severe OCD symptoms. And to see that in a
Speaker 2: four year old was very like jarring. So some of
Speaker 2: the things we saw were like excessive handwashing and just
Speaker 2: never felt clean. She would tap, she would tap out
Speaker 2: different patterns on her fingers and again, this little sweet girl,
Speaker 2: and she would just cry because she never felt like
Speaker 2: she was clean enough or doing things enough, or maybe
Speaker 2: there were bugs somewhere. So after about maybe three or
Speaker 2: four days of this, we brought her into the pediatrician,
Speaker 2: just her regular pediatrician. Before this point we had we
Speaker 2: really hadn't had any big health issues other than we
Speaker 2: had had a few like rashes, diaper rashes and things
Speaker 2: like that that were long term, but other than that,
Speaker 2: she had been very healthy. When we got in there,
Speaker 2: the doctor was concerned. She saw some of the symptoms
Speaker 2: we were talking about, and at that point she said,
Speaker 2: there's two options that she thought and one was a
Speaker 2: brain tumor, which would have been very troubling obviously, and
Speaker 2: she said the other thing is called pandas and pandas
Speaker 2: she immediately told me most doctors won't recognize this diagnosis yet.
Speaker 2: It's still pretty controversial, but basically she told me it
Speaker 2: has to do a strip, and so she at that
Speaker 2: point I asked her to do a strep test to
Speaker 2: see She said we could start there, and it immediately
Speaker 2: came back positive. So it was a relief right away
Speaker 2: in that it wasn't something like a brain tumor, and
Speaker 2: we had kind of hoped that as soon as that
Speaker 2: strip was treated it would go away. So for a
Speaker 2: standard strep case, typically the kids will have a sore
Speaker 2: throat and they'll go or maybe a fever they'll go
Speaker 2: to the doctor get five to seven days antibiotics. So
Speaker 2: they gave Juliana five days antibiotics and we saw like
Speaker 2: a sudden turnaround, like day two three amazing, and we
Speaker 2: were like thrilled. But after the antibiotics ran out, we
Speaker 2: saw this sudden uptick again in those OCD symptoms. So
Speaker 2: we went back and the doctors said, you know, we
Speaker 2: understand that this is frustrating, but there's nothing we can
Speaker 2: do because at that point they would swab and it
Speaker 2: would be negative because of the antibiotics. It had treated
Speaker 2: it enough. PANDAS stands for Pediatric autoimmune neurological disorder associated
Speaker 2: with STREP. And so I'll be honest, I don't love
Speaker 2: the name PANDAS because people think it's like this cutesy
Speaker 2: little thing, and if you say it, it even has
Speaker 2: a little bit of like a misunderstanding by people because
Speaker 2: it had been a controversial thing. So a couple people
Speaker 2: I know that their children have it, they just refer
Speaker 2: to it as autoimmune encephalitis, which is basically exactly what
Speaker 2: it is. So so you say PANDAS and people are like, oh,
Speaker 2: what's that you know?
Speaker 1: Yeah, yeah, it's like a fairy tale, Oh it's so cute. Yeah, lovely, No.
Speaker 2: And so we started this path where the doctor basically said,
Speaker 2: we can't do anything for you, so what do we
Speaker 2: do next? They said, you can head over to the
Speaker 2: children's hospital and go to the er and wait and
Speaker 2: see if you can find somebody to see you. And
Speaker 2: so we started. We started that path. First visitor where
Speaker 2: they really didn't go anywhere. They said she's testing negative.
Speaker 2: They didn't really obviously didn't know her, so they didn't
Speaker 2: notice any of the symptoms that much. So we said, okay,
Speaker 2: we went home. They said kind of like give her
Speaker 2: tile on all and wait it out and see how
Speaker 2: she feels right, and that didn't do anything. And the
Speaker 2: autoimmune side of Panda's basically the strip in her body
Speaker 2: wherever it is. It's hiding basically from her body, but
Speaker 2: her body thinks it's in her brain, so her whole
Speaker 2: body ramps up all of its immune fighting response and
Speaker 2: it goes up to her brain. So some people even say,
Speaker 2: like it's like a brain on fire thing where your
Speaker 2: brain is just being attacked, attacked, attacked, and obviously the
Speaker 2: strip's not there, so it's the immune systems not accomplishing anything.
Speaker 2: And so it's just swelling her brain, stressing her brain
Speaker 2: to the point of her we could even see her
Speaker 2: pupils would dilate so big that it was like jarring. Oh,
Speaker 2: it's rible. So you see again, this four year old,
Speaker 2: little sweet girl. We tried to let it go for
Speaker 2: a little bit, see if it got better. Her preschool
Speaker 2: teachers called home and said that she spent thirty minutes
Speaker 2: washing her hands and when it stop, which is just
Speaker 2: like absolutely heartbreaking.
Speaker 1: Yeah, at that age, you don't usually see that. I'm
Speaker 1: actually a little bit surprised that no one thought that
Speaker 1: maybe she had autism.
Speaker 2: You know, It's it's interesting because I think if it
Speaker 2: had been maybe even my son or some other kid,
Speaker 2: they might have gone down that path. But Juliana was
Speaker 2: exceptionally vocal, and she was very articulate and very emotional
Speaker 2: and happy and bubbly and loving. So they did kind
Speaker 2: of say, you know, this could possibly be some other
Speaker 2: things too, but with the really acute change in her,
Speaker 2: but then seeing that little bounce back with the antibiotics,
Speaker 2: we kind of we were pretty confident it was this.
Speaker 2: I had. I'm a teacher, so in my town where
Speaker 2: I teach, I knew there was a mom who had
Speaker 2: had a child with PANDAS, and I really didn't know
Speaker 2: much about it, but I remembered that he for him,
Speaker 2: it was he couldn't wear any clothes on his leg,
Speaker 2: one of his legs and feet and if he if
Speaker 2: anybody touched it at all, it was horrible pain. And
Speaker 2: so I called this mom and didn't know her that well,
Speaker 2: and she spent hours on the phone with me and
Speaker 2: was just lovely. And that's I think one of the
Speaker 2: takeaways from all this is to see the support I've
Speaker 2: had just with people around me, just for no reason
Speaker 2: other than to help me and help my kid so
Speaker 2: that I can go help other people and their kid
Speaker 2: has been really cool. Especially when you go to the
Speaker 2: doctors and you're hoping that they're going to help you
Speaker 2: right away and they just don't.
Speaker 1: Well, it sounds it's such an elusive situation, and there's
Speaker 1: not there's not there's not a blood test, there's not
Speaker 1: like some kind of scan that definitively just defines anything.
Speaker 1: It sounds like in a way, it's a process of elimination.
Speaker 1: Because she said the fact that when she had the
Speaker 1: antibiotics in her system and they were actually working it
Speaker 1: was like the light switch went down and turned the
Speaker 1: power off of all this stuff that was going on,
Speaker 1: and then as it wore off, it went back on.
Speaker 1: So there's like it's like putting together a puzzle.
Speaker 2: It is, it is, And I think now, so this
Speaker 2: was eight years ago, maybe, I think, so I've done
Speaker 2: some kind of they're doing like this very massive questionnaires
Speaker 2: and stuff for parents and especially parents with one child
Speaker 2: with it with panas and one without, and they ask
Speaker 2: a million questions even like what foods they ate and
Speaker 2: all this other to try to figure out things. So
Speaker 2: I think hopefully it's going to get better. And I
Speaker 2: know some doctors. Unfortunately, most doctors that will go down
Speaker 2: this path with you do not take insurance, so most
Speaker 2: of those doctors are out of pocket, probably because they
Speaker 2: can't officially do some of these things under their own
Speaker 2: whatever umbrellas. So but they'll do like a tighter to
Speaker 2: see how much strap has been in the body and
Speaker 2: if it's been in their long term. But a lot
Speaker 2: of people have strap too, so yeah, so there's no
Speaker 2: like one test some people say it's OCD, but at
Speaker 2: four that's pretty rare to see such a you know,
Speaker 2: significant amount of OCD symptoms and ticks.
Speaker 1: And those usually are woven in with other diagnoses that
Speaker 1: can be made more clearly.
Speaker 2: And so this was it was frustrating because we knew
Speaker 2: what it was. We knew we knew with the it's
Speaker 2: very difficult to get antibiotics period for anyone, and then
Speaker 2: for a child, especially if they've already tried it once,
Speaker 2: they're very hesitant to give more. I think we maybe
Speaker 2: ruined that in the eighties and nineties would just she.
Speaker 1: Would give you an antibiotic for like a little anything,
Speaker 1: and you've got an antibiotic.
Speaker 2: So we've kind of overcorrected now where doctors are like, Nope,
Speaker 2: we're not doing that until unless we know for certain
Speaker 2: we have a positive strap test. I'm like, okay. So
Speaker 2: after we waited and she was still struggling really bad,
Speaker 2: and it was just heart Like I said, Lauria, it
Speaker 2: was just heartbreaking. Yeah, we were just sick to sick
Speaker 2: to our stomachs. My son was a baby at this point,
Speaker 2: so a lot of people said, well, she's probably just
Speaker 2: acting out for attention and things, and we knew that
Speaker 2: wasn't it. But we brought her back to the children's
Speaker 2: hospital and we were like, we're not going to leave
Speaker 2: here without some answers. That day we had I had
Speaker 2: gone in to get her out of her crib and
Speaker 2: she wouldn't let me touch her. She wouldn't let anybody
Speaker 2: touch her, and she said, everybody's dirty, everybody's bugs on them.
Speaker 2: So it was like this very significant, like almost break
Speaker 2: and I couldn't get her to let me touch her.
Speaker 2: She's screaming, and I finally like got a blanket out
Speaker 2: and I said, can I hold you in the blanket?
Speaker 2: And she let me wrap her and that's how I
Speaker 2: got her into the car over to children's. So we
Speaker 2: call that like a flare for sure, Like sometimes it's
Speaker 2: way worse. Sometimes that'll drop an hour or two later,
Speaker 2: and it kind of the swelling might go down a bit.
Speaker 2: So by the time we were seeing she was doing better.
Speaker 2: She wasn't hysterical, but she was still stressed out and anxious.
Speaker 2: But they thought she was manipulative. They thought she was
Speaker 2: the one doing it. So she and again she was
Speaker 2: just this happy.
Speaker 1: Sweet Yeah, that's kind I have to say, that's kind
Speaker 1: of making me angry. Even though we're well past her
Speaker 1: being four, she's four years old. She didn't throw herself
Speaker 1: down in the aisle at the grocery store for cookies. Right,
Speaker 1: there's something different about somebody's going to Yeah.
Speaker 2: Their advice to me was so they said, you probably
Speaker 2: don't have a lot of experience with little kids, which
Speaker 2: at that point, I've been teaching kindergarten for fifteen years,
Speaker 2: which they didn't know. And they said, you know, sometimes
Speaker 2: kids will do this to get their way. And they
Speaker 2: gave me the number for like two to one one
Speaker 2: and said call and they'll help you find some parenting classes.
Speaker 1: And that was it.
Speaker 2: And that was all they did. And I was so
Speaker 2: disheartened and frustrated at this point. They gave her a
Speaker 2: teddy bear and we left Well.
Speaker 1: And this is the main children's hospital in the state
Speaker 1: of Connecticut. This is where, especially in the northern part
Speaker 1: of Connecticut, everyone goes when they have a kid who
Speaker 1: has any kind of like major illness situation. So there's
Speaker 1: other people who use it for more like routine stuff.
Speaker 1: If you don't live right near it, that's the spot
Speaker 1: people go to Well.
Speaker 2: And that's kind of what we were, like, we know,
Speaker 2: we weren't going to drive an hour here for no reason,
Speaker 2: you know, so and it was it was very difficult.
Speaker 2: I think, what in hindsight, I do appreciate our pedatrition
Speaker 2: at least recognizing it could be this thing. But it
Speaker 2: is disappointing. If they had just been able to then
Speaker 2: and there diagnose her with that or something, maybe we
Speaker 2: could have gotten helped faster. I mean, strep is a
Speaker 2: very tricky illness for thousands of years, scarlet fevers caused
Speaker 2: by strap. I mean, this is nothing new. I think
Speaker 2: just this one label for it is new. But basically
Speaker 2: her brain was just so swollen. So we went and
Speaker 2: we went down the naturopathic route for a while and
Speaker 2: things were okay, but because she was a naturopath, she
Speaker 2: didn't want to do antibiotics. I don't know, so we
Speaker 2: ended up again four year old five year old. At
Speaker 2: this point, she'd been sick for a couple of months.
Speaker 2: She's just very tired, miserable. Antibiotics had she had been
Speaker 2: on that off that, and so then they wanted her
Speaker 2: to do like fish oil and a and a CBD
Speaker 2: tincture and you know, probiotics twice a day and vitamins,
Speaker 2: and it was just too much.
Speaker 1: She was so sick when we get all that stuff
Speaker 1: into her and many of those things have a tendency
Speaker 1: to make your stomach a little bit upset. So if
Speaker 1: you can't get enough food in her to put those
Speaker 1: things into her, that's not going to help.
Speaker 2: Right, And she would just she's going to take it,
Speaker 2: right she I think she almost felt like she was
Speaker 2: being punished or something too. At that age, you don't
Speaker 2: understand why do I have to do all these things?
Speaker 2: You know, I don't want to. So I kind of
Speaker 2: joined some of those, like Facebook mom groups, and I
Speaker 2: also reached out to a few other friends had reached
Speaker 2: out to me to say, hey, I know some he's
Speaker 2: gone through this or went through this. So at that point,
Speaker 2: a woman named Susan I talked to her. Her son
Speaker 2: had been struggling with it for years and so she
Speaker 2: she hadn't even heard of what it was at the beginning.
Speaker 2: So at least with that with us, we knew right
Speaker 2: away it could be this pandace thing. She was really
Speaker 2: good about saying like, don't don't give up, keep pushing
Speaker 2: and in the meantime, here's what you can do. And
Speaker 2: so there was a few things that were would help us.
Speaker 2: So some sort of anti inflammatory like an I'm profen
Speaker 2: would help during these flares. It would take her brain
Speaker 2: swelling down a little bit, ice, chewing ice, as much
Speaker 2: ice on her palette as possible, like ice, ice cream,
Speaker 2: ice pops, any of that stuff, and just.
Speaker 1: A little easier to get a four year old ice
Speaker 1: pod just to take a fish.
Speaker 2: Oil, so I don't even want to take fish oil,
Speaker 2: you know, and so so ice and then also putting
Speaker 2: her in like a tepe or cool bath kind of
Speaker 2: would help sometimes reset. And it wasn't perfect, but it
Speaker 2: would at least get us to the point of like
Speaker 2: we could kind of reason with her. And she was
Speaker 2: very smart, so she understood something was wrong, but she
Speaker 2: didn't understand why. And so this went on for a
Speaker 2: very long time. It took us another six months or
Speaker 2: so to get in finally to see someone at Children's
Speaker 2: hospital who was a specialist in this, and we saw
Speaker 2: him once and he was wonderful and we left there
Speaker 2: feeling like it was a miracle. The best thing he
Speaker 2: prescribed was antibiotics with like four refills, which was to me,
Speaker 2: you know, someone who you know, my husband and I
Speaker 2: are both like rule followers and and everything, and at
Speaker 2: that point we were so desperate. I was like telling
Speaker 2: my brother to save his kids antibiotic if they don't
Speaker 2: use it, just in case, you know. And then we
Speaker 2: knew that wasn't right, but we also saw her suffering.
Speaker 2: So at this point, this doctor doing that was just wonderful.
Speaker 2: He told us to avoid yogurt, which was interesting. We
Speaker 2: had never thought of that. But one of the one
Speaker 2: of the strains in yogurt to make it yogurt is strap.
Speaker 2: It'll say s dot like and then a word.
Speaker 1: Oh yeah, I wonder if that's why though they in
Speaker 1: like typical situations, they tell you to eat yogurt when
Speaker 1: you're on antibiotics to stop used infections. But it obviously
Speaker 1: has the wrong effect on her right, so that wasn't
Speaker 1: her favorite food you.
Speaker 2: Want to buy. I never thought i'd have to punish
Speaker 2: my kid free and yogurt. She loves yogurt still to
Speaker 2: this day. She'll beg us, beg us and beg us,
Speaker 2: and so we'll let her have it once in a
Speaker 2: while and and but we would. It's funny because like
Speaker 2: at school, they would have it sometimes with the lune
Speaker 2: that you gogurt things. Or she'd go to my mother
Speaker 2: in law's or my mom's and she'd come home and
Speaker 2: be a mess like another, like a total like meltdown tantrum,
Speaker 2: and I'm like, how much yogurt did you have?
Speaker 1: You know?
Speaker 2: And we would realize like she'd eat four yogurts in
Speaker 2: you know, two days, and she'd be a mess again.
Speaker 2: So I'm like, oh no, so.
Speaker 1: She yeah, well, and you would have never known because
Speaker 1: that wouldn't have been a thing that you would have
Speaker 1: never you wouldn't have eliminated.
Speaker 2: Never in a million years. Something else they showed us,
Speaker 2: which I thought was super interesting and you'd be interested
Speaker 2: in this for sure. They have done now some studies
Speaker 2: with kids who are a little older, and they would
Speaker 2: have they take a kid who was like an art
Speaker 2: a good artist, and they had a beautiful picture drawn.
Speaker 2: I remember this girl drew like a wedding, like a bride,
Speaker 2: you know, this beautiful picture. And then during a flare
Speaker 2: they had her draw, and then after the flare and
Speaker 2: he after healing, they'd have her draw again. The first
Speaker 2: picture was beautiful, like very clear and you could see
Speaker 2: all the details. The one in the flare was almost
Speaker 2: just random shapes. It was siggles and random shapes. And
Speaker 2: this is about a ten year old. I believe the
Speaker 2: third drawing was way better than the one in the flare,
Speaker 2: but it wasn't nearly as good as that first one.
Speaker 2: And that kind of hit me that this is going
Speaker 2: to cause this could cause some major lasting effects. And
Speaker 2: I don't think people maybe think about that. They think
Speaker 2: strap antibiotics and you're done. But in this case, it's
Speaker 2: basically your body's just fighting you.
Speaker 1: So when you use the word encephalitis, I think even
Speaker 1: lay people recognized that that's something bad going on in
Speaker 1: your head. Yeah, they yeah, brain swelling is yeah. You know,
Speaker 1: even if you're not a medical professional, you would go, huh,
Speaker 1: that can't be good.
Speaker 2: It is night and day when you say that. When
Speaker 2: you start with my daughter as autoimmune encephalitis, you get
Speaker 2: a much different reaction than my daughter has PANDAS, and
Speaker 2: she gets treated very differently depending on what you say.
Speaker 2: And my best friend is a BCBA, so she's been
Speaker 2: working with student children for twenty years with needs. Her
Speaker 2: youngest actually ended up getting PANDAS too. She came to me,
Speaker 2: it was about five years later and she said, and
Speaker 2: this is my best friend for twenty years. She said,
Speaker 2: I'm sorry, She said, I thought you were losing your
Speaker 2: mind trying telling people to save their antibiotics. She said,
Speaker 2: I thought you've lost it completely. I get it now,
Speaker 2: like I get this feeling of helplessness.
Speaker 1: You can see how parents who have children too that
Speaker 1: we know what the treatment is and maybe for some
Speaker 1: reason the treatment isn't available. I just I read something
Speaker 1: that that long ago about parents of children who had
Speaker 1: cistic fibrosis going, I want to say, to South Africa
Speaker 1: because they had reverse engineered this fairly new medication that
Speaker 1: is incredibly expensive changing and life changing, but a lot
Speaker 1: of people can't afford it, and a lot of insurance
Speaker 1: companies won't pay for it. So people are like going
Speaker 1: to like foreign countries and buying things and we I mean,
Speaker 1: hopefully that's working out for them, but we know, like
Speaker 1: you know, people were buying medications from Canada and finding
Speaker 1: out that they were made out of cheat rock, you know,
Speaker 1: which is really quite frightening. I did do actually an
Speaker 1: episode probably maybe about four or five months ago with
Speaker 1: keras at Alino, who is someone who has a daughter
Speaker 1: with cistic fibrosis and her daughter actually has what was
Speaker 1: I guess that seems strange to say this the right
Speaker 1: kind of cystic fibrosis to gain access to this medical
Speaker 1: to this I believe it's the same medication. And I thought,
Speaker 1: you know, I mean parents, parents will do anything anything,
Speaker 1: their children.
Speaker 2: Anything, thousands of dollars of debt. And these mom groups
Speaker 2: were great on Facebook. But that was another kind of
Speaker 2: sad thing, as you'd see these parents who flew their
Speaker 2: kids all over the world and did these big you know,
Speaker 2: blood transfusions and all these tests and everything, and really
Speaker 2: what they needed was antibiotics.
Speaker 1: And yeah, and it's frightening to think too when people
Speaker 1: are you know, and I understand, I mean I don't
Speaker 1: personally understand, but I understand as well as I can
Speaker 1: understand not being in that situation why you would try
Speaker 1: just about anything. But you know, sometimes the things that
Speaker 1: people are trying are also causing other.
Speaker 2: Issues dangerous that bring you to the wrong road.
Speaker 1: Yeah, we're kind of thirty minutes goes really quick. I know,
Speaker 1: I'm hoping that I'm really hoping we can find a
Speaker 1: time so that we can be Juliana and you hear
Speaker 1: a little bit more, but how is she doing now?
Speaker 2: So she's doing okay. What we realized that big first
Speaker 2: couple of years she needed about six months of antibiotics
Speaker 2: to get a break through and finally heal that strap,
Speaker 2: which was very difficult. But after that we worked really
Speaker 2: hard to try to get the school on the same
Speaker 2: page with us with a plan. And I'm sure you've
Speaker 2: talked about five bell four's and PPTs and we've had
Speaker 2: quite the journey with that as well. But basically, just
Speaker 2: this year, sixth grade, she was able to get a
Speaker 2: fibel four in place. We have been pretty blessed and
Speaker 2: lucky that she has not had strap that many times,
Speaker 2: maybe five times over the last few last ten years.
Speaker 2: She did ever tonsils out that helped. We've discovered, like
Speaker 2: chlorine sets off this immune system reaction and you said
Speaker 2: the same thing, and so we've we've learned how to
Speaker 2: avoid certain triggers like that, and we know that sometimes
Speaker 2: she'll still have a tantrum at twelve that's not her
Speaker 2: age appropriate, but afterwards she's like, I don't know what
Speaker 2: that was, you know, So there's still some things left over.
Speaker 2: For the most part, she's doing really well. She's a
Speaker 2: very smart kid. She's a very high reader and loves
Speaker 2: life and she's joyful and you know you, I know
Speaker 2: you had said something about what's the best thing you've
Speaker 2: seen or what is the best accomplishment, And honestly seeing
Speaker 2: her just joyfully playing with her you know, friends at school.
Speaker 2: And I was able to watch her being in the
Speaker 2: same school with her this year, just skipping and jumping
Speaker 2: and laughing and having a really great time with her friends.
Speaker 2: And that's been just amazing because there was a time
Speaker 2: we were really worried. So to see her feeling secure
Speaker 2: and strong has been really cool. But she's a tough kid.
Speaker 2: She's had a lot of you know, a lot of obstacles,
Speaker 2: and some were probably caused by this and we're going
Speaker 2: to be, you know, coming up against them still for
Speaker 2: a while. But she's very strong and very brave. So
Speaker 2: I'm really proud of her. I know she'd love to
Speaker 2: talk to you.
Speaker 1: Yeah, and I definitely want. I'm hoping that we'll be
Speaker 1: able to schedule a time with the two of you
Speaker 1: soon so that the two episodes kind of come close together.
Speaker 1: I did have an opportunity when you and I spoke
Speaker 1: before the taping to meet her briefly on a video,
Speaker 1: and she just exudes like such She's just vivacious. She's
Speaker 1: very vivacious, which is not really surprised because that's kind
Speaker 1: of mom's personality too. But you know, you can see
Speaker 1: what draws people to her, which I think is you know,
Speaker 1: will certainly be her one of her strengths, because it'll
Speaker 1: probably be times when you know, she does kind of
Speaker 1: lose her temper a bit, and folks, as they grow
Speaker 1: to like her a lot, sure they will be more
Speaker 1: forgiving of the you know one time a year that
Speaker 1: she kind.
Speaker 2: Of yeah, that's part.
Speaker 1: Yeah.
Speaker 2: One of her little cute girlfriends said to her one day,
Speaker 2: did you did you take medicine today? You know, whatever
Speaker 2: it was, Do you need something? Do you need some ice?
Speaker 1: Like?
Speaker 2: She she started getting it, and I was like, oh,
Speaker 2: that's pretty.
Speaker 1: I'll get you some ice. I love it and I'm.
Speaker 2: Gonna get you some ice. But no, she's wonderful and
Speaker 2: I do appreciate you asking. And I think if I
Speaker 2: was starting now, I would just say push really hard
Speaker 2: and really fast, and don't take no for an answer,
Speaker 2: and don't feel like you're being difficult. Just just keep
Speaker 2: pushing because you know your child best.
Speaker 1: Yeah. I think that's the hardest part for parents, when
Speaker 1: they find themselves having to advocate so hard that they
Speaker 1: feel like people are like, oh, it's you on the phone,
Speaker 1: I don't talk to you, or hare comes that parent
Speaker 1: into that meeting, and you know, and that's not helpful
Speaker 1: at all for the parent or the child, you know,
Speaker 1: and we have to understand And what is that expression?
Speaker 1: You never know? You don't know what somebody else's life
Speaker 1: is like because it's not your life.
Speaker 2: Exactly, yeah, exactly.
Speaker 1: But thank you, thanks so much for coming and visiting
Speaker 1: with me. And we'll work on a time to get
Speaker 1: Juliana in here, because I think that that would be
Speaker 1: like super wonderful for for the folks that are listening
Speaker 1: or watching the podcast to be able to to see
Speaker 1: her in in her in her full, her full, full
Speaker 1: blonde hair, blonde hair, you know, that's what comes with
Speaker 1: being twelve, blonde hair with pink tips. Thank you so
Speaker 1: but thank you so very much. I'm very much appreciated this.
Speaker 1: And yeah, tell Juliana we're sorry that we missed her,
Speaker 1: but we know that she needed to do something else. Yeah,
Speaker 1: probably at this point a little bit more important.
Speaker 2: Yeah, so we'll get we'll get her. You're very happy. Yeah,
Speaker 2: she's like me. She can't stick to a little bit
Speaker 2: of time. So that's Okay, yeah, okay, thank you, Thank
Speaker 2: you so much. Nice to see you.
Speaker 1: It was good to see you too, Emily. Are we good?
Speaker 1: Thank you for listening to Universal Unique exploring the neurodiverse
Speaker 1: world of the extraordinary. Join me, doctor Lorie on Transformation
Speaker 1: Talk Radio every second and fourth Monday at eleven thirty
Speaker 1: Pacific time, as we continue to explore navigating the world
Speaker 1: not designed for diversity, For advocacy and support for individuals
Speaker 1: with disabilities, Let's connect. Learn more about consulting and life
Speaker 1: coaching at Noopolisticconsulting dot com.