ETB 49: Unlocking the Potential in Children with Down Syndrome: Darcy's Mission and Brady's Journey with Darcy Day

ETB 49: I'm thrilled to introduce you to Darcy, a devoted parent and former teacher who's turned her personal journey into a mission to unlock the potential in children with Down syndrome. Imagine the heartache of knowing your child has thoughts, ideas, dreams locked away in their mind - simply because they struggle to communicate. Darcy, all too familiar with this struggle, has dedicated her life to tearing down these barriers using the unique and highly effective Speller's Method.

Darcy's son, Brady, is a loving 20-year-old with Down syndrome and apraxia. Darcy shares the trials, triumphs and transformative power of communication in Brady's world. Overcoming common misconceptions and trauma often associated with Down syndrome, she paints a powerful picture of Brady's journey. You'll be inspired hearing how he has learned to express himself by spelling, sharing his dreams, and even using mathematical equations to make sense of his world.

Communication is more than just words. It's a lifeline for individuals like Brady who face unique challenges due to Down syndrome and apraxia. Listen in as we delve into the importance of repetition, coaching, and purposeful motor skills in helping these children unlock their full potential. With Darcy's insights, we hope to inspire parents, educators, and anyone touched by special needs, offering hope and strategies to foster communication and inclusivity. Lets celebrate Brady's story - it's a testament to the power of patience, love, and the right strategies. It's proof that where there is a will, there is way - a way to unlock potential and give voice to beautiful minds.

Connect with Darcy:
https://brandnewday.life/

Email:
darcy@brandnewday.life

Brady, Darcy's son is part of The Army of Spellers that is giving hope to new SPELLERS. 
https://spellers.com/an-army-of-spellers/brady-mohr

UNDERESTIMATED
https://a.co/d/ioga9Xg 

Spellers Movie
https://spellersthemovie.com/

Website for SPELLERS
https://spellers.com/about-spellers-method

FB:  Darcy Day  (you can find me with a picture of my son on a 26 letter board) 
https://www.facebook.com/darcy.mohr.12

Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/

Transcript

Sandy Deppisch: 0:05

Hey there, I'm Sandy Deppish, and this is the Embrace, the Blessing podcast. Each week, I talk with a parent who has a child with a disability. They share their biggest challenge, their greatest joy and their hopes and dreams for the future. You'll learn about resources available to you and discover helpful hints and tips If you want to be inspired and encouraged, stick around. Let's walk the road less traveled together. Well, darcy, I am ecstatic to have you with us today. I have been wanting you to have on this show ever since I met you back in January. Darcy was our mentor and I don't want to proceed what she's going to tell us, so that I'll just start with that little tidbit. But we were so blessed to have you because you were instrumental, I think, in giving both myself probably Josiah, for sure, and definitely his caregiver Hope, and you gave all of us a totally different perspective on what we can expect from a child with Down syndrome Amazing. So I'd like you to introduce yourself, tell us a little bit about you and let's share your exciting story.

Darcy Day: 1:17

Yeah, hope that's exactly right. Yeah, so I'm Darcy Day for the listeners and I live in Phoenix, arizona. I've homeschooled my kids, so my oldest is 20 and he has Down syndrome, and then I have a 19 and 18 and then an eight year old, so I get to do it again. I'm looking at what did I do wrong. Now I can change. So it's beautiful having that age gap.

Sandy Deppisch: 1:43

Yes, you were a busy mom.

Darcy Day: 1:45

Yeah, and I was in teaching. I have a master's in gifted and talented, and I kind of went that route. And then when Brady was born, he had a tremendous amount of medical issues and so quit, which was such a God thing, and then full time helper for him, right, those of you listening who have kids with Down syndrome just, we had a lot of surgeries, lots of anesthesia, lots of all the therapies and looking back, I just, oh my gosh, now what I know, what I know, it's just, it's exciting because I feel I can share some things that might help other parents, right, and just what we're learning is it's you just have to change your mindset, right, sandy? So I have a practice in Phoenix. It's called brand new day and I am a Speller's Method Practitioner, so what that is is we teach kids not how to spell. Okay, this is going to shock you.

Sandy Deppisch: 2:44

They already know that.

Darcy Day: 2:47

They already know how to spell Right. Don't click off this podcast, because I would have, because I didn't think my son could spell and we teach them how to communicate right through spelling. And what I thought you know with my son was because he's I would call him like well, people call him nonverbal. I guess that's his diagnosis, right, it's really speech apraxia, even though he never clicked all the boxes, but he could say words, but I wasn't really sure what they, you know what it was. And so, real, minimally speaking, and I just thought, oh my gosh, if Brady could just talk, he'd be so much higher functioning. Yes, I don't, you know. Now I'm like what? Speech has nothing to do with cognition, but that's why-.

Sandy Deppisch: 3:38

But the perception is there that others. That's why I said yes. Other people, when they see that your child is non-speaking, perceive limited intelligence. Sorry, I'm probably stealing some of your thunder. I like that. I like that, but I also I want you to. Sorry to interrupt again, but I want to have you stop for a second and explain the definition of apraxia.

Darcy Day: 4:02

Yeah. So in layman's terms, it's basically where the body does not obey the brain. What? What's that mean? There's a disconnect, okay. So we know in kids with Down syndrome and autism and cerebral palsy and Tourette's and lots of syndromes, guys, that their language centers are fully intact. So that has nothing to do with motor. That's everything to do with understanding and applying what you've learned, and formulating opinions and ideas and having dreams and hopes and all those things. That's all fine. That's all fine in our kids' brains. The obstacle is the motor. So it's the other part of the brain where it's the motor, and so it's like, okay, I want to speak out a word, I know a word I want to speak out, but then it won't even come out because there's a glitch in the motor system. So it's all motor and speech is all motor. And guess what else is all motor? Which I had no idea, pointing to a picture to show that you know, that's a tree. It's the color blue. That word says bat.

Darcy Day: 5:13

Well, my son, before I started, well, first of all, I tested him on his letters. He's 18. And I said this isn't going to work. I've never seen my son read. I've never seen him. I don't think he knows how to read. I don't think he even knows his letters. I don't speak to him. I thought I was. You know, hey, I have a master's, but I never saw competency, but it's because he could never show it. That's what a praxia looks like.

Darcy Day: 5:41

So I would put I really did this. I put five letters out in front of him, sometimes four, an array of four letters, and I go, okay, brady, point to the B and he'd point to the T. I'm like, okay, point to the C, and he'd point to, you know, the L, and I'm like, oh, my gosh, how is this going to work? He doesn't know his letters. Write every assessment. You think about this Like every. We had to get his IQ tested for guardianship, which we are now going to be reversing, and listeners, you'll know why. But anyway, um, ported decision making yeah, right, like we have full right, but I don't, we don't want that now because Right, no, no, no yeah, I mean you're, you're taking away the guardianship to do support.

Sandy Deppisch: 6:23

Yes, yes, yes, hallelujah, praise the Lord, happy to hear that. Okay, go ahead yeah.

Darcy Day: 6:28

Yeah and so, but when we got the IQ test, all the assessments when he was in kindergarten and preschool, um, any kind of assessment, guess what it takes.

Sandy Deppisch: 6:40

Motor.

Darcy Day: 6:41

Motor. Who coaches motor? No one. So like, how are you going to get an answer right by pointing if no one's ever coached your motor? Well, you don't. Like my son has spelled out, you know, since I'm fairly good at failing all tests put before me, I think they need to. Yeah, he has spelled that out. Those are his words. You know that I think things need to change. So he can't point reliably. It's all fine motor guys. So all pointing and putting this and that that's all showing competency. But if we have a child who has a praxea but wait, my kid's not diagnosed with praxea who cares? Right, whatever, that doesn't matter. Okay, like people get caught up on that, I'm like but can your kids speak? Can they have a full conversation with you, like at the same age? Peer, almost everybody. They say no.

Sandy Deppisch: 7:34

Right, and you can't understand them sometimes when they do speak, because they have trouble articulating, even though they have some speech or maybe unreliable speech. The articulation issue is there as well, so that impacts communication.

Darcy Day: 7:48

Even stuttering. I'm seeing the client right now who stutters, and or I will be. She's flying in from I can't. Why better not say, but anyway, I don't want to violate HIPAA, but anyway, she's flying in from you know, another state or country and she stutters and she has Down syndrome and but yet she can't you know, she can't have a full conversation. So she does have a praxea, but she has stuttering to right. She can't fully eloquently say what is going on with her body, what she wants to do in her life, what her hopes are, and you know. So anyway, praxea also looks like being lazy. I thought Brady was lazy, I'm like my gosh. He's sitting on the couch and we're unpacking and going up the stairs and you know when we go on vacations and he just be sitting there, you know.

Sandy Deppisch: 8:35

Oh, this position is perfect. Yes, I'm actually of them.

Darcy Day: 8:39

And I don't think I might have called him lazy. But now I know well, that's because he couldn't get up, he couldn't start. So it impacts the body Right. The first step of a praxea, or of moving your body purposely, is actually starting. Well, that's really hard for our kids. So why do kids sit in the car and they don't get out of praxea? Why do they just sit on the concrete in the grocery store and not get up? No guys, it's not. It's not about compliancy, it's about their body can't get started.

Darcy Day: 9:11

You know why does my kid sit on the playground and never, you know, won't leave the playground of praxea. That can't start. Why does my kid Brady run off the playground every time I go? When he was young I never had friends because I'd say meet me at the park and he would just run. I was always chasing him. And why is that? Oh, because he can't stop. That's another stop, that's another step in moving your body purposely. If you have a praxea, you can't inhibit or stop. So go get your drink of water. Do you know how many motor steps are involved in going to get a drink of water? They know they're thirsty oh my gosh. But they have to first get up from where they are, go get the cup. Well, how do you do that? Think of all those motor steps. It's not a cognition things, it's all motor steps. Right, we create all these goals for our kids like, well, they can't do two step directions. Well, do you know why that is?

Sandy Deppisch: 10:07

They can't even do the first step. Yeah, they can't get started.

Darcy Day: 10:10

Right, it's all motor. So if we start coaching the motor talking to their body, it's really weird at first, right, Sandy?

Sandy Deppisch: 10:17

Oh my gosh, so weird, so strange.

Darcy Day: 10:20

You talk to their hand.

Sandy Deppisch: 10:22

Your fingers.

Darcy Day: 10:23

Yes, you talk to their feet, walk over, okay, step, step, step, fill a weight in your. You know it's like it's a little new way to talk to your child, but it works, you know, and some of these kids are injurious. Well, that has some to do with sensory, but that's also has to do with the praxea too. You know it's not intentional, right? So, anyway, a praxea looks like my son not coming to the dinner table now, you know. So we have to coach his body and he does it. Or they're glued to their like device on YouTube and they can't stop, they can't press stop. So there's other things with all technology too, but it's partly a praxea too that they can't stop it, right? So hopefully I explained that well. So somebody just connect.

Sandy Deppisch: 11:07

When you told me back in January that one of the hardest things for kids with a praxea, young adults with a praxea to do is to get in and out of a car, that was like a huge light bulb moment for me, because that is a challenge for Josiah. He loves to go for rides, that's like one of his favorite things, so you would think, great, getting in the car is no problem. Getting out, I always thought, was because he did not want to leave that activity. He wanted to keep on driving, riding in the car. When you taught us that it's the hardest thing and we have to tell his body what to do, that made such a huge difference, like just thinking of it in terms of all the things he has to do to be able to execute that motion of getting out of the car. And then the other thing that I just thought of now is I always say transitions are extremely hard for Josiah. Any transition starting it and stopping it are hard, oh, my word.

Sandy Deppisch: 12:01

He's all over it. Well, that's a praxea. I never dawned on me till this moment that the transitions is a praxea.

Darcy Day: 12:07

I know, and so isn't that in gray. Yes, all our goals transitions, but we're not addressing what the real issue is Right, it's motor.

Sandy Deppisch: 12:18

We have children with a praxea, young adults with a praxea, and they're struggling to communicate. So what do we do? I've tried everything, everything. Yes, we all fly to Arizona. We moved to Arizona. That's the key.

Darcy Day: 12:36

Oh, wow, you get them communicating on what we do. It's called Speller's Method and so it's super low tech and we start with three boards. They have the alphabet. Don't get in your brain that your kid doesn't know the alphabet, because I'm telling you right now, I've seen many, many with Down syndrome. Not one of them. Okay, are you ready for this? Not one of them is showing intellectual delay. You've got to be kidding. Yeah, we have now in our, our vault. We call him so Brady, calls him his tribe and he spells out. Now he's openly communicating. But anyway, 55 Down syndrome spellers and they're all 100% showing competency.

Darcy Day: 13:23

Now, do all of them go, maybe as Flowing nicely and things are, you know, progressing linear. No, like Josiah, right, like some of them have more. The more severe practice you have, the harder. It is right, we have solutions, right, and so what it is is it's using the difference between this and like an AAC device. By the way, we've used all the AAC devices, I think there there are same. They never worked, except one button Really worked well for Brady, and it was the fart button. Oh, I'm like, oh, my gosh. So maybe because it's so many times you press the fart button, but anyway, nothing else worked. The reason is because that's all fine motor. So we take communication out of the fine motor.

Darcy Day: 14:14

Talking is fine motor, pointing fine motor, but we use the shoulder and the elbow Because they are pointing, but yeah, you're saying they're not just pointing with the finger, they're, you know it's not a fine motor pointing like you, and you have to be with a skilled practitioner to learn how to do this, but you, you use the gross motor to point to the letterboard many Children are using and adults pencils to poke through a stencil. I'm finding the Down syndrome population Almost them, well, the majority of all my clients that I see we use a high contrast kind of a sensory board. I'm finding Ocular or praxis to be super common in our kids and the Down syndrome population. What I'm seeing is they have more severe eye Issues.

Darcy Day: 14:58

That might make sense because look at the shape of their eyes and I don't know it's kind of interesting, but anyway I can't research everything so I leave that to other doctors, developmental optometrist, so so anyway, you start very elementary and it's really clumsy at first and you don't know which board to pick up and you spelt Things wrong for your child and and, and then you progress to a 26 letter board, as I did with Brady. And then you know he's getting a little bit more automatic. Wait what? Oh, because we're coaching the motor, and anything you coach and do repetitively, guess what it becomes Purposeful. So think about piano.

Darcy Day: 15:34

I like to use this analogy. So when you first play piano, main go, my little one is Going three, two, three, two, three, three, three. You know, really simple, that's the three boards. And then soon after that he's going to be learning more chords and then, and then he'll be playing chords and then transfers into compositions. So it's a whole progression and you have to have a teacher to help you who's very skilled in piano. So it's the same thing in Speller's method. Yet they have a teacher, and, and then who helps you? The parent, you know, work with your child, because we want, you know your kid wants to communicate with you more than anybody, right? And so we coach the parents and then Then it becomes a symphony. So that's where we are now with Brady. So he is I don't know if you knew this he's starting to type now. So the the his end goal.

Darcy Day: 16:29

Spellers are different, but many of them want to just be independently typing, and we don't we don't Touch kids, you know, it's all them, so we're not, we're just coaching their eyes like up, up, up, up up. And so he's now starting to type and his goal is to be completely independent, where he's just typing away like many other Spellers are doing now. So then he can go anywhere. And it's not a, it's a regular keyboard. We don't doctor anything because we want him to, you know, be independent in the world, right, so so the sky is a limit for him now and it's. And he can tell me. We just had a Doctor's appointment with a doctor out in Illinois, a zoom, and the first thing he spelled to her was I get nervous around new doctors because they all think I'm retarded.

Darcy Day: 17:18

And he's held that he is, he's, yeah, it's. There's a lot of trauma, guys. Yes, you know, we presume something for so long. And why wouldn't we? Because that's what we've been told Since before our kids were born. We believe it, but it doesn't mean it's true, right, just because something has been said for so many years doesn't mean it's true. So what we're saying is people with Down syndrome are not intellectually delayed, period, and I have yet to seen someone who is.

Darcy Day: 17:47

If you really look and think about your own child, I knew this like, oh my gosh, brady got that, you know, or like he'd get a joke or maybe he'd say something, but I didn't really understand him. And then the next day I'm like, huh, that's what he was saying. Right, feelings, and probably you too. Those feelings are like fleeting, but I would just brush him under the carpet because like seriously, I had no idea what to do and when he was younger I had more gumption and like I tried everything right and then, and then, as he get older I don't know about you, sandy, but it's like I guess it was kind of giving up because I just didn't know.

Sandy Deppisch: 18:23

I don't know that it's giving up, darcy. I think it's an acceptance, it's it's like a sentence, that's it. I just accepted this is as good as it's gonna be, you know? And and here's the thing that's so saddening to me about this whole Apraxia thing is they're locked inside their bodies. Yes, they are fully functioning, intellectual human beings with the same hopes and dreams and desires as anybody else. Their age, they just their body betrays them, and so they can't get out. And can you imagine how frustrating that is? Number one, just to experience that for a day. Don't talk for a day and try to communicate with somebody. Your needs and wants right, and on top of that being presumed completely In the luxury delayed exactly and then have them either misinterpret you or Treat you much younger, like I was thinking.

Sandy Deppisch: 19:10

Recently I was telling one of our new caregivers that when Josiah was probably 10, I was bringing out light up toys that play music like a toddler would enjoy, because he loved those when he was little and he's very into sensory things. He got so many through him across the room. Well, what ten-year-old wants to be playing with toddler toys? We don't know, you know, but so for them there's so much frustration and then probably they come to an acceptance as well as Hmm, I just have to live like this, where the trauma comes in, right.

Darcy Day: 19:38

Well, we're in the thick of it now, because now Brady and Brady is really leading the Down syndrome population, so, whether he likes it or not, but he's having a little bit of a hard time. So I'm the loudmouth for him and but you know, it's the people's perceptions and and he is starting on a presentation and his, his first sentence for the presentation is introduction says and these are his words that he spelled out he said my name is Brady Moore and I have an extra chromosome, aka Down syndrome. Remember one thing if nothing else, a praxe of masks are intelligence. And so, yeah, he's, he is spelling such profound things and talking about how, how has science gotten this all wrong? Just yesterday we're on a zoom with a bunch of spellers and they all have autism. So Brady's kind of like, here I am and he was saying he's just, he's being torment his words, I'm being tormented lately by how science has, by how science has depicted us with Down syndrome as and he does use the word retarded. He's just, he hates that word, but he uses it for impact because he's like you know, and all these kids are like all autism, and they're typing to him saying you're brilliant, you can be the, you know, because it's scary right Once you become communicative, like oh no, now you're opening yourself up and this is a whole new world for him. So, although it's glorious, it's also kind of scary for spellers. But what hope he has.

Darcy Day: 21:10

And I mean the way we treat him, the way we talked to him, and you know he likes Shakespeare, so my husband reshakes to bear to him at night. He likes being read to by my husband and then we're reading all the classics and I've never seen my son read, ever, okay, ever, ever, ever. So people say, well, my son can't read. Well, I would tell you the same thing because I never saw him reading a book in my life. Well, he did. I'm not sure. And he says, mom, don't ask me too many questions and go, don't go too deep. I'm like okay. So like I can't really ask, like how do you know all this stuff? Right, right, that will be coming. It's like peeling an onion, you know.

Darcy Day: 21:51

I'm getting to know the real Brady, yeah, and through him we're hoping just to give people hope and just kind of like think, like Understanding doesn't have a look, it really doesn't. And guess what, and guess what. People have been doing this since the 70s and 80s. So I did go down that rabbit hole and there have been many other people who have said Down syndrome is not a cognitive disability. But guess what happens.

Sandy Deppisch: 22:20

What we all buy into that they get smeared. Oh, those people who are trying to pioneer that, yeah so you know, and so am I.

Darcy Day: 22:28

I don't care, but anyway. So that's what. That's what happens, because it's so far fetched in people's minds. But I know people who are listening, if I know, you know your kid knows way More than they can show. I just know it. So, and if they have speech, same thing. I mean I've yet to meet somebody with Down syndrome that can talk eloquently, right, like how Brady and these other spellers are spelling out right, you know they're dumbed down their vocabulary, but yay for them that they can actually articulate. Like you know, brady said that he wishes that was a superpower. Yesterday he said he wished his superpower was speech.

Sandy Deppisch: 23:09

But I know well, I want you to back up a little bit and paint a picture of Brady prior to spelling and Brady now, like, obviously, you said he had some words, he was, you know, able to communicate. He appeared lazy. Just give us an idea of what he was like and and how he has emerged so I mean, he seemed pretty happy.

Darcy Day: 23:33

But you, he did a lot of physical activity, so that's what we focused on in homeschooling. Okay, so I would. People are like, oh well, he heard everything you homeschooled. Well, no, actually I had respite and have workers and you know what they did? They rode bikes, they went to the zoo, we had memberships to everything. So they go elsewhere.

Darcy Day: 23:52

While I taught the girls and and when I did co-ops, his sensory system, just it would not allow him to be in those co-ops like you would run away. Oh well, that's a proxy or two. So it's kind of connected. By the way, the aprexia and and sensory and and so he wasn't included in those. So he, I think he was pretty isolated. He loves YouTube videos. He'd play those. He was like a master with combining two devices and coordinating them. Yeah, he, it's amazing and and and he would like create these symphonies.

Darcy Day: 24:33

I don't know if that's what I'm saying, that's what it appeared to be, but like, not much purpose, right, and we're like do we? You know, my husband are like, okay, should we just like create a nonprofit, like we were thinking, because now he's, at that time he was 18 and I'm like what, what do we do? What kind of job can he have? I never wanted him in a place where they're coloring you know we can't color anyway because you can't hold a pencil really and or crayon and the way that you have to write, and so it just, you know, like the documentary and spellers and and we can share that on your, yes, but anyway, the man who was really in charge of that documentary, jb Hanley. He talks about this and I felt the same way, like it's, it's dark guys when they get older. It's like what are we gonna do? And as you're aging, what are we gonna do? And you worry, and you know I love God I have yet to surrender that worry to him about what's gonna happen to my kid when I'm not here. It's like a reality for a lot of us, like it's scary, right, and like he just didn't have a purpose and I mean he just was kind of there, right. We didn't really have huge conversations with him because, you know, talk short and simple that's what.

Sandy Deppisch: 25:51

That's what we're taught. Couple of word sentences.

Darcy Day: 25:54

People yeah, don't talk in complete sentences, poor guy, so anyway, but now, okay. So a good example. After he started spelling, his next birthday came around. Most of his birthday cards that we would give him before I would write really big and I'd say and I haven't, dear Brady, I love you, you are my shining light, love mom. And that was pretty much it, and same with the cards that the, the girls, would make them.

Darcy Day: 26:25

Okay, the next birthday, after he started spelling, I took a picture it's actually on my Facebook page and I took a picture of the girls cards to him. You guys need to friend me on Facebook, seriously, darcy day, and the picture is my son with a 26 letter board and the picture is of their birthday cards. It's like two pages long, oh, saying how much I mean completely Presuming competence and just saying how much they loved him and what a trooper he was, and and you know how inspirational and resilient Right, oh, my gosh, what kids are so resilient. So I mean now we, we talked to him like. We talked to him like we would talk to any anyone else.

Darcy Day: 27:05

You probably have the same right. He there's a different, he feels different, like his Like, because now he knows that we know that he's fully in there. So he's like he. He walks different. I don't know. It's weird, sandy, like he is so engaged and but now he wants everybody to know I'm in here. So you know, we have a little laminate that we take around and he'll spell, like he'll do orders at the restaurant for what he wants.

Sandy Deppisch: 27:36

By laminate you mean the alphabet, the alphabet on a laminate.

Darcy Day: 27:41

Yeah, yeah, so we have a smaller one for him because of his eyes and all that. So, anyway, um, so now he can order the foods. We know what he wants. He is fully included in conversations. We talked to him like he understands everything. We don't dumb down language, you know. He can go to these different alternative type of doctors that we see and say what's going on with his gut. That's a really big issue right now with him and he has pandas as well. So the whole detoxing channels just aren't working and a lot of our kids have a hard time, you know, with their limb system and all that. So, anyway, we're in the middle of that. But he can tell us like we started on something and it really had an adverse reaction, and he told us what was going on. Well, that's out.

Darcy Day: 28:27

It's huge, huge, yeah, huge. You know feeling and how they are medically and and emotionally. And you know the first thing, one of the first things he ever spelled was he talked about his anxiety and he talked about sound frequencies and how different sound frequencies send sparks up his spine and he said he calls it his, not said. I'm saying said, but you know what I mean. Right spelled, right spelled. I call it my hell spine. And so, because we adopted a little guy and he was Little and there's a lot of trauma around that and he screamed and so he used to like run in the bathtub and curl up in a fetal position, mark what is going on. But now he can tell us. Well, it was his frequency, and and so we asked him well, who's your go-to person? And he spelled out grace, which is my 19 year old daughter. And listen to what he spelled. He spelled I love you more than metals have flowers or the sky lit by stars Straight from heaven you are. Now what AC device can do that?

Sandy Deppisch: 29:37

None.

Darcy Day: 29:37

None, I want juice. Yeah, that's why it didn't work. Brady says. I said Brady, why didn't? So I did ask him a little question at the beginning and then he said back off. But he says because he did say back off, mom, no, he says Darcy. I'm like can you just call me mom, I don't know. No, it's always Darcy and my husband Troy, it's like I make his hand go and oh, it's all Darcy, so funny. So, anyway, I'm trying to break that. That's your name, yeah, but oh gosh, I can't remember what I was saying the juice.

Sandy Deppisch: 30:16

You asked him yeah, I want you. They're dumb.

Darcy Day: 30:19

They were dumb because his language oh my word. Well, you think about it 18 years. What are you going to do if you can't speak reliably or speak at all? Right, you're in your head that whole time. So I'm imagining that he is just playing with words. He's listening. Think of all the things we're bombarded with in grocery stores, all the conversations at every Easter, christmas, thanksgiving, family gatherings. He's listening to all these conversations and if the TV's on, he's hearing. That, he's hearing. You know. He's reading billboards and tickers. If somebody is watching the news, so they're just bombarded with language. And so his language is beautiful and just like that poem. That was the first thing, one of the first things he ever spelled out, and I'm like, wow, and so that's the difference. Like it's beneath him to say I want juice. Like, come on, right, he would say it very eloquently if he did want juice now. Anyway, can you just use more simple words? Like, can you dumb down your language for?

Sandy Deppisch: 31:26

me that is just amazing. It is amazing and to know that all those years he was in there. Now he's free, but, like you said, so there's trauma. So he's dealing with some of emotions right, because now you have to relive some of that which I imagine is probably really hard and hard for him to express. Nobody wants to go to those deep emotional places, but I can imagine as a mom that's hard to hear too.

Darcy Day: 31:54

Right, it's hard, it is, but you know, I just keep trying to really reinforce that. Let's focus on today, because you know I went there. I mean, oh my gosh, when he first started spelling the guilt, I'm like, oh, I just remember looking at him going. I am so sorry, don't you remember? Yes, you know, realizing that your kid's always been in there and like you didn't pick up on that, like there's, but you just can't live in that, right.

Darcy Day: 32:23

No, as you know, right, and I mean I dealt with it and I cried like a baby, of course, but, I'm past that now and sometimes I'll go like, sometimes I get mad, like why are you guys saying your kids at a first grade level? You know that gets me amped up because, like they're not, they just can't show competency. So yeah, dealing with trauma and just focusing on you know what's important now and trying to move on. So I mean, all of our kids have trauma if they've been presumed completely intellectually delayed, you know when they're really not.

Sandy Deppisch: 33:00

So and I've had recently written about Josiah from professionals that he's severely, profoundly autistic. Yeah, and seeing those words is like hard to read, Right, I know he presents that way because of his complex you're the one I think that told me is a very complex body because of all his sensory issues. But he's in there and I've seen it from the time he was very little. You know things like. You're talking about amazing problem solving skills. The things he would do to figure out something would just blow my mind and I was like wow, and I know he was reading when he was three and four years old. People think like my other kids go like really Like yes, he was, I knew he was. But even today, if there's words scrolling across the screen which, if we put anything on his iPad music video, we always make sure there's lyrics because he is tuned into those lyrics.

Sandy Deppisch: 33:53

But here's the other thing you taught me which is an amazing tip I think all parents need to use with all of their children, regardless of disability label is we tell him buddy, we know you're in there, we know you are so intelligent, we know you probably know stuff way more than we do. Our job is to help you express that. We've tried over the years so many different things and we're so sorry, we just didn't work, but we're not giving up. We will be in this till you're able to fluently communicate with us.

Darcy Day: 34:23

So it's going to be a marathon, but we're in it, we're training and we're in it and how much hope you're giving him, because he is really tricky right, and so your journey is going to be quite the inspiration for so many people, because he's probably one of the trickiest bodies I've ever seen, sandy. But thank you, yeah. But look at you, you're not giving up, no, and he's getting better because it's becoming guess what More purposeful. Why? Because you're coaching the motor and you're repeating it over and over with gross motor. That's kind of the change, right, right for sure.

Darcy Day: 34:59

What hope he has. I mean, you're a success story.

Sandy Deppisch: 35:04

The other thing we've done is we read him a lot of nonfiction books written by other spellers. Yes, they talk about what their experience is with ABA, what they were like, and they talk about all the things that teachers you know well meaning I'm not, I'm not downing anybody Well meaning professionals have tried to do with them, using their best practices that they knew at the time and how they were inside screaming like no, I know way more than this, and so I think for him to hear peers writing in books, because they are now keyboard writers, they can type, sharing what those, I think like the other day we've read the same book underestimated. We're reading it a second time and a brand new caregiver was reading a part where Jamie spelled for the very first time Jamie is the son right Spelled for the very first time and Josiah started jumping up and down and screaming.

Sandy Deppisch: 35:58

It was that he was an emotional connection he made with his father and the caregiver was like whoa, he was just calm the whole time until we got to that. So there's definitely a need for our kids to know we know they're extremely capable and they're competent and we're going to be in this with them. But so when I say be in this with them, I took a class. You were my mentor. We, at the end of that nine week course, are able to work with Josiah, but we're not certified to like you are. You are certified. So you recommend that people come to somebody like you yeah, but that they can work with their child right, and then over time you coach the parents and how to do this themselves. Correct?

Darcy Day: 36:38

Right, I think the biggest misconception and what I get is people oh my gosh, I'm going to get these boards. It's an amazing story. And then they put it in front of their kid and then they can doesn't do it, and then they give up and they say it doesn't work. You have to have a teacher, you have to have somebody trained that can coach you, to coach your child. So absolutely yeah. So you know, we we do the Speller's Method, so that's kind of spelling to communicate, but amped up. So we, we just have a little bit more enhanced training. Okay, and so that's what your course was through. And you know they can contact me and there's different practitioners around the state and if not, I do out of state people come, but then they go home and then we coach online.

Darcy Day: 37:26

So I think it's very hard to start somebody on Zoom. I don't like doing it because you have to assess, like with Josiah, that would have never worked, right, right, never. And it takes so long to figure out. Well, which board are we going to use, you know, and so that's why, really, you have to start in person and then if somebody is not near you, then you go home and then then you keep working and you get mentored online and you know we have different courses through Speller'scom.

Darcy Day: 37:55

We have, you know, like what you took, the CRP course and there's another course on there for parents advocating for getting the letterboards in the school, where there's a great Dr Daniels, who Brady sees, who's a neurologic developmental optometrist, who's saved my son's voice because his voice comes through his eyes, right, because if he can't see he's not going to be able to spell, to communicate, and so she has a course on there for people to learn about the different kind of anomalies with eyes. So Brady's actually in her series, so it's kind of fun because he's super tricky as well. So get with someone trained and I'm happy to lead people to locations that might be, you know, closer to them than Arizona, although I am really the only one that's seeing these Down syndrome clients because it's marketed toward autism, right, so you'd never hear about. Even in the documentary they don't mention down syndrome, even though that child has Down syndrome. You know that Sid has Down syndrome in the movie, but they don't say it.

Sandy Deppisch: 39:02

Did you know that? I didn't? I don't think I paid attention to that piece Interesting I saw the movie.

Darcy Day: 39:08

I paid close attention. I took Jamie and JB Hanley and, like you have to mention Down syndrome. I'm always waving my hand like don't forget it, I'm always squeaking it in. So I just I'm never going to give up kind of tooting that horn about Down syndrome too. So most of the information that your listeners are going to find is going to be around autism. But, guys, it works with kids with Down syndrome, only diagnosis Down syndrome. It works with Down syndrome and autism. It works with Down syndrome, autism and ADHD. Like you know, if the kid can't talk like their same age peers, this would be a thing that you'd want to consider. I always say it like would this be good for me? Well, can your child engage in conversation like a typical same age peer? You know, if the answer is no, then why wouldn't you try it? Like no side effects, guys, you know, only hope, I mean. And yet we've yet to find anyone who can't do it.

Sandy Deppisch: 40:04

That's just incredible to me. So I mean, it's not like a money back guarantee, but it is you know like. I'm just like saying I'll give you free sessions. I love a lot of friends over this, I mean.

Darcy Day: 40:16

I literally lost friends because I don't know.

Sandy Deppisch: 40:18

you know, there's a whole camp that, like what I'm saying is like wait, wait, wait, no, no, no, no, no, no, so it's mind blowing and, like we said earlier, you get to a point of acceptance and I imagine if you have a child that's verbal or, you know, has minimal speech, even that you're just like, ok, we've had this dance through our life and we know it's working. It's not a well oiled machine, a well oiled machine, but it's working. And so why upset the apple cart? You're asking people to like totally change, like you said, their whole mindset and believe me it's been hard, yeah, hasn't it?

Darcy Day: 40:56

Yeah, like it's been hard. But I want to talk about. You said something about testing and we got that IQ test for Brady to get guardianship and guess what his score was? I'll never reveal what it was, but immeasurable because it was so low they could not measure it. So he is in the most severe category of severe.

Sandy Deppisch: 41:17

Yeah, that's where we would be. I know if we had to go through that, we would be there. Yeah, but on paper that's not reality.

Darcy Day: 41:24

Yeah, that's because, oh yeah, it requires motor, and fine motor at that, not what we'll do on verbal test. But what is that? Oh, you have to point. No, he fails that too. But if he uses the gross motor Now, by the way, when we do spellers methods, so you start with that gross motor, right? But now Brady is all in defined motor because all those pathways have been myelinated. He knows where all the letters are. So this is and I'm showing Sandy how he spells, but he's like fluid going from letter to letter. It's like a dance, it's really beautiful how he's spelled.

Sandy Deppisch: 41:59

How long has he been spelling? Two years.

Darcy Day: 42:02

Okay. So we stopped for about five months, four to five months, because he had an injury to his neck and he literally couldn't see. So that's why we got into Dr Daniels, the neurologic developmental optometrist, so we stopped and that was scary because really the eyes are the voice, right, right.

Sandy Deppisch: 42:20

So we stopped and then, but I always say two years minus some months, I think for Josiah, well, that will have to be multiplied by like five, you know. But but that's okay, it's better for, it's better for. Well, you know what I say that? But then, when you were talking earlier, I was thinking about when we first started. We couldn't get him off. Yes, remember, he cannot get him off the floor or out of the room into a chair. Yes, and now he willingly walks to the chair. He sits and looks at a. Good, Sandy, say how you started.

Sandy Deppisch: 42:52

We started with Josiah laying on the floor, refusing to get up to sit in a chair. Yeah, just to sit in a chair. We were, we were going to be content with him sitting in the recliner, which he enjoys in his bedroom. Just sit there, buddy, we're good. And he refused to do that. Now it's like the timer will ring hey, buddy, it's time for spelling and boom up. He goes and goes and says no.

Sandy Deppisch: 43:13

When we went to a house, because there was a woman here that worked with him for about a couple of months, maybe six weeks or so, and the first time he wouldn't get in her front door. And then, when he got in her front door, he just sat on the carpet, because it's carpet, the fun texture, the sensory issues going on. Then by the third time he walked in and went straight to her dining room and sat down like, okay, I know what I'm supposed to do now. I'm like, just like, so it's baby steps. Like when I first heard this first I'll be really honest, and this was years ago, before I met you my thought was this would work for everybody but my child Same, right, and I'm sure every parent probably thinks that. And then I thought, well, what do we have to lose? We're going to try it. I've seen so many amazing success stories Like this would be something I would take to my grave and feel horrible about if I didn't try with my child. I think every parent needs to give their child this opportunity. And then when he started making baby step progress, that was the fire was ignited. Like watch out, we're on it now. Like I said, if it takes us 10 years, we're in it. He knows we're in it. We're not going to give up. So the day when he can like spell a full thing is, yeah, going to be mind blowing.

Sandy Deppisch: 44:23

The biggest change for us at this point with his very complex body is we are treating him like a 21 year old. We talk to him, we read him things that are his favorite. Things are quantum mechanics and physics oh yeah, because podcasts. He watches YouTube, he loves them, and I don't even understand. Like literally. He'll look at mathematical equations to take up the whole page. I have no idea what you're talking about and he is fixated. I'm like you're on your own, but I basic math has me.

Darcy Day: 44:51

I didn't think Brady knew numbers past eight. Oh no, no, no, he does. It's all mental math. He's brilliant in math as well. Yeah, I really, because it was pointing and so I gave up on math. I'm like nothing makes sense and they all say, oh, kids with Down syndrome, they get you know math and all this. Oh, yeah, whatever, I don't believe any of it anymore. Wow, yeah, you know. The one thing is oh gosh, I lost it. But the whole that, these kids, I wanted to ask you, don't you feel a difference just in his presence?

Sandy Deppisch: 45:30

Yes, that's right, because you're presuming competence and I think part of that is that we look at him differently. Yeah, we look at him as somebody who completely knows everything that's going on and we're so respectful of that and, like you said earlier before, he was just there. He was always just there and it was. Like you know, we I even tell caregivers like I feel like our days are spent with filling it up to keep him busy. Right Now it's like we're trying to do things that are intellectually stimulating for him to feed that brain that we know is fully intact, right. So, so exciting.

Darcy Day: 46:10

I just want to say something. Yes, so Brady still listens to the Wiggles. Okay, good, this is a quick Minnie Mouse. I hope, brady, you're okay that I'm sharing this. He sleeps with Minnie Mouse every night. He likes little kind of kid stuff. So he I'm like why is he doing that and why is he listening to the Wiggles and Blippi? I love Blippi, but anyway, I used to talk about Blippi when we'd go to the playground before Blippi was around.

Darcy Day: 46:38

This is a slide, let's go down. Brady's like I already know, but he says it gives him comfort. All those childlike things give him comfort. There's a kid in the movie, right, speller's documentary, and I can give you the link. Yes, anybody can get the link for the movie. And the kid always carries around flour from Bambi, right, and he is brilliant and you can see that in the film because he's spelt in the film. But his brother, excuse me, always has his flour. And so many of these kids have these childlike tendencies and that's what's masking to their intelligence. But why does my kid like Sesame Street? Many kids with autism still listen to Elmo. It brings them that joy and that comfort. Yes, and Brady still will listen to other types of things, but he does say listening to podcasts and other things is hard for him because of his words, novel voices, so he's got severe sensory issues with his ears.

Sandy Deppisch: 47:52

Wow, that's so interesting.

Darcy Day: 47:53

Yeah, he can't listen to. Even movies are difficult for him, just because of the frequencies he talks about, the frequencies of hearing. I learned so much from you.

Sandy Deppisch: 48:05

I just need to commission Brady to answer questions for me about Josiah. Yeah, like literally, I just said the other day that's it. No more movies for Josiah. I love movies and so I keep taking the sensory friendly movies, sensory friendly activities, that that you know like a play and stuff like that. Yeah, and he does not enjoy it. And so I finally put up the white flag, like why am I making this kid do something? And I never thought about the different voices that might be difficult to process. Yeah, wow.

Darcy Day: 48:34

Also remember apraxia is makes your body unreliable. So what looks like? They may not like it. Actually, they may like it, but do you put headphones on him?

Sandy Deppisch: 48:49

He won't wear them. We've tried, we don't wear them yeah we've tried. Yeah, we have the kind that you know will play music and the kind that are noise canceling and yeah. So, to wrap this up, I want you to tell parents listening today that have a child with Down syndrome, who they feel like. We're good, my kid's reading, my kid speaks, I understand them. Maybe some other people don't, but I, you know, interpret for them what. What should they do?

Darcy Day: 49:16

Ask yourself what? What's that future going to look like? Right, and do they have access to their world? Like that's what Speller's Method is Brady's future? His future is totally different. Now he can do whatever he wants. If he wants to go to college, I think he's going to be going into advocacy. He wants to change.

Darcy Day: 49:39

He's very upset about this I'm going to call it narrative about Down syndrome and, and you know, intellectual delay. So he's very upset about the science part and what they say about people like him. His future is, I mean, okay, so that sounds like well, my kid couldn't do that Well, because they don't have access to full, reliable, robust communication. So I would say, ask yourself, what kind of future do you want for your child? Like, if what I'm saying is true and it is, if what I'm saying is true, what could that do for your child? To have it complete, full access to all their thoughts, ideas, hopes and dreams. You know one they can actually eat what they like to eat and they can actually do what they really want to do and not be in these places that treat them like a child. I mean the future, oh my gosh, like it's completely different, right, isn't it? I mean I just it's so exciting and and that's why we just want he always says he wants to flee his people from their nest.

Darcy Day: 50:48

He says he's flown out of his nest but now he, his job, is to flee all those brothers and sisters that's what he calls them, his brothers and sisters in the nest. So they're still there, right trapped, and he really does call it a prison of silence. It's a prison. It's probably worse than a prison, right, but that's what he calls it, his prison of silence that he used to be in. So I mean I just encourage everybody to like look at your child today and look for signs that yes, they got that, or oh my gosh, I know they're in there, and then try it like, seriously, there's no, a kid very quickly can show you competency through this Process and that's what I've seen with people coming in right and my current clients are local too.

Darcy Day: 51:34

All of them.

Sandy Deppisch: 51:37

Yeah, definitely, and I, I think too and we're gonna put this in the show notes the book Underestimated by JB and Jamie Hanley. That book will open your eyes, you know, because he didn't believe his son could do it either and he was weeping when he did right, like, oh my gosh, the same. Everything you've talked about here's, here's. My final thought is you owe it to your child To do this. Every parent that has a child with downs or demos it to their child to seek this opportunity. That's right. Yeah, so you just have to come here and visit all of us, or we have to come.

Darcy Day: 52:10

You know what?

Sandy Deppisch: 52:11

I have somebody from Houston.

Darcy Day: 52:12

That is inquiring. So now there's yeah, so there's we get a group of us. How many do you need? I mean, if I had four, I would fly out to you guys, okay. Yeah, I would do so if you can get four, which I think we could probably do. That, you know, preferably with Down syndrome, because that's my yes. Yes, but you know, I'll do cuz I.

Sandy Deppisch: 52:33

Octasom too, I was gonna say well, josiah fit in, cuz he's got the dual diagnosis.

Darcy Day: 52:36

Actually he's no but you know I like Expand the hard tribe as I call it. You know we call him the spelling homies with an extra chromie.

Sandy Deppisch: 52:48

So yeah, so there's somebody in the Houston area. It's already interested.

Darcy Day: 52:54

Yeah and she, they may fly out here, but like, so yes okay, that would.

Sandy Deppisch: 53:01

We'll have to talk after and connect, and then we just need two more.

Darcy Day: 53:06

Well, no, we don't need one more. Why you and I don't want to say her name, but you know. And then the one, the other one, and then we need one more. So the okay, I didn't really wish you and I think she'll do it.

Sandy Deppisch: 53:19

Okay, oh, I know, I know who you mean Okay, yes, yeah, I need to have her on the show too. She's awesome yeah.

Darcy Day: 53:25

Yeah, and and I do workshops, by the way, and I show Brady's progression of spelling, you can't dispute it. So I just did a conference oh gosh, not too long ago, maybe two weeks and so I put together a clip of Brady starting on flapped boards with the three boards. We had to flap them so you only saw four letters at a time because his eyes, and then it shows them without the flaps, and then on the 26th, and then on the lamina and then typing, so I have a whole progression of what it looks like. So you have a link to that.

Darcy Day: 53:54

I Don't know, I don't like just hand that out. Yeah, okay, yeah.

Sandy Deppisch: 53:59

I was just gonna say that'd be just so Incredible for people to see that you know.

Darcy Day: 54:03

Wow, I know but in the area we could do a talk. We'll talk later, but yeah, and I could show that to everybody.

Sandy Deppisch: 54:09

Oh, oh yeah, she H feds parents group, the Down syndrome support group.

Darcy Day: 54:13

You could come be a speaker, I could do it.

Sandy Deppisch: 54:16

Oh, girl, we're gonna make it happen. Okay, you're amazing. Thank you so much. What I hope I made sense for your listeners you did. I mean, I keep trying to think of it. If this was the first time I ever heard this concept, what would I want to know? And so I was trying to ask those kind of questions. But it's hard because I'm already vested in it, you know, and I know about it. But yeah, I mean, we could definitely come back and and do it again if we have to, to explain it in more detail. But there's so much to this that, like I wanted to bring up the whole piece about the purposeful motor, like going to Strong classes, like just I was doing those kind of things are so important because they build the synapses in the brain to make this more.

Sandy Deppisch: 54:58

Yeah, have it for me so awesome. Thank you, darcy, it was great Appreciate. Love you too.

Darcy Day: 55:06

Thanks.

Sandy Deppisch: 55:07

All right, see ya, bye, bye, thank you. Thanks for listening to the embrace the blessing podcast. Visit embrace the blessing calm slash podcast for show notes and links to any resources mentioned. If this has been beneficial to you, please share it with a friend or post it on your social media pages. Join me next Wednesday for more inspiring stories from people just like you.