Jessica Mandujano and Rachel Harrington

00:02 I'm Jessica. Mandujano. I'm 39 years old. Today's date is December 10th 2019 and I'm in Meridian, Idaho with my friend Rachel. Okay. I am Rachel Harrington. I am 27 years old today is December 10th 2019. I am in Meridian, Idaho and I am here with Jessica and we are friends.

00:29 How do you say I'm good? How are you? So excited to be here. We are here because of walking and sweet boy, who I only I only met through Instagram initially, right? That's why we're here and I think that we need to talk about how that happened because in 50 years from now, who knows where we're going to be but I think that it's important to know that the beauty of social media how negative it can be in so many ways it is so beautiful in so many ways. I agree. I agree. I really do agree with that. So I remember now looking back that I was following your account and then realized that you were local. Yes, and so I didn't really know when I first saw your account that you were local. I just was a fan of what you were doing. And so

01:29 Then I reached out to you. Yes, and I said hey if you're ever doing any photo shoots for kiddos with the weighted vests and it's a child, please let me know walking would love to be a part of it and then you did reach out to me and you're just looking so where exactly I just think that so special and I love that. He wasn't thrilled to be there. Right but I got to know him and I got to kind of get down on his level and that was before we knew kind of what was going on with him and had that full understanding of

02:19 You know where he could be and I mean what I was I was a long time before we found out his diagnosis was he does get over stimulated and so it was a very different experience for him to be there with all these other kids that were kind of just running around and having fun with all of the toys and he struggles with toys with movement with motor planning. So all of that is very uncomfortable for him and then put him in a setting where it's kind of loud and kind of busy a new and different with new people that he hasn't met yet. You did such a great job at pending. One-on-one time with him and just focusing on him and what he needed even though you had never use follow him on Instagram and seen his seeing his stories and seen the therapies we were doing but it's different when you meet

03:19 In person, I feel like yeah, so you did a great job it just kind of realizing where he was and at what level he was aware you needed to be to make him comfortable. Yeah, and we got a great shot. Got it. Yes. Yes. Well, I think that we should chat a little bit about the backstory because as a therapist, this is the stuff that's really interesting to me and I think that it's important to remember how we got where we are today and he's

03:51 He's Joaquin and he's special and he's magical and

03:57 There's a story behind that. Yeah, and it starts at what 20 weeks 20 weeks. Yeah.

04:08 Prenatal scan where you get the whole are you having a boy or girl? It's a very exciting time. My mom was with us. We only have girls in the family. So my brother has three sisters and he has a daughter and then my sister has two daughters. So it was all girls. So my brother's just kind of surrounded by them in his whole life. So we found out we're having a boy and we were so excited. My mom was so excited. It was just a really exciting time to welcome our first boy born into the family, you know, so after our scan was over we went in to wait for somebody to come talk to us. My doctor was unavailable that day. So somebody else came in worse. I know and I'm looking back I can tell that at first I thought that the person was very unpersonable. I just had really bad bedside manner.

05:08 You know, but I kind of feel like they were nervous now that I look back on it and didn't really know how to give us the news that they could tell something wasn't right. So he wasn't growing they said at the rate he should be for his just Jason, you know, if we were his age, he wasn't his gross wasn't where it should be and you wanted me to start seeing a specialist right away. So starting at 20 weeks. I was referred to a specialist. It was amazing and we started seeing him every month and then at 32 weeks. Everything was going fine pregnancy was going fine. The girls was reduced. So he had he was diagnosed with iugr which is intrauterine intrauterine growth retardation. And so that's why he was in his face.

06:08 So they didn't feel like it was anything like down syndrome. They couldn't see those markers just was just as growth. He was active all of those things. There was all the fluids everything was fine. And it was just the girls to screw. So at 32 weeks. I was just home doing laundry and just having a great day and I had a ruptured I drove my right. Yeah. I was very very scary. There was a lot of blood and I was just horrified. I called my sister. I called my husband. It was my boyfriend at the time, but I called him and he was at work and he said I'm going to get there as soon as I can just get to the hospital called my sister and I don't know how she did it, but she actually made it to the hospital before I die. Yeah, so she was at work and she just booked it over there, but they were very

07:02 They were concerned when they saw me my doctor ugly as luck may have it. My doctor was doing rounds at the hospital where I went home. I got a call while I was in line at the ER and you had to wait in line. I got to the ER and I didn't know what to do and a phone call from my nurse my doctor's nurse and she said I just found out just go straight up to labor and delivery your doctors are there they're waiting for you. So I got on the elevator. I went to the second floor and my doctor was there. They got me in right away and they hooked us up to the fetal monitoring and thankfully there's a heartbeat. So that was good, but they could not stop the blood and there was quite a bit of it. So you do in the meantime, my siblings had arrived and we're in the waiting room my boyfriends and husbands are at my husband then boyfriend arrived.

08:02 We were all very just concerned. They took me by ambulance to St. Luke's because they look some Boise. So Boise's facility is just more prepared for a early delivery. So they thought that I was going to deliver so they kept me there that weekend they were able to stop the bleeding and thankfully I did not deliver. So I was sent home on modified bed rest after that. I was seeing a specialist and getting ultrasounds. I believe it was an ultrasound a week and then getting fetal monitoring twice a week. Do they know what cause they don't know? What caused it? They could never find how they never found out. It was just an unexplained rupture, but it was very scary. And so I was sent home on modified bed rest and at 37 weeks. My specialist said, you know, the girl said she's getting to be a little bit too much. You know, he's get

09:02 Too far behind and we're going to have to go ahead and deliver early so they scheduled me for an induced delivery at 38 weeks. Wow, and then here you up and then here he was it was it was very it was it was crazy that you anticipate. No, not at all. We have the whole birth plan yet, even with all of the preparation knowing that we were doing an induced delivery things did not go as planned. I was I was planning on not getting a

09:40 Epidural epidural epidural but I just couldn't take it anymore. So I asked for one screaming for one they came in to give me the epidural and when they laid me down I have right right after the epidural they said oh my God, you are at 10 already. They didn't check me before they give me they gave me the epidural.

10:04 So then they said you have to push on so I couldn't because the epidural had kicked in and I couldn't feel anything so they had to wait an hour and I started getting sick from the mixture of the epidural and the pain meds that they had given me earlier on and while I started I was just I was sick the nurses were helping me through all of that. And as I was getting sick, they said don't move don't move until there was walking already coming out. So it was huge. Oh my word sting lots of nurses screaming for the doctor to get the doctor in your get the doctor in here Bend wasn't there he had gone because we had to wait but our give gone to the lunchroom to eat cuz I was the first time he was going to eat that day. So then my family is calling my has been telling him here right now. So it was very quick. They didn't even have time to like

11:04 Flip down the bed. So the doctor and nurse were laying on the bed to deliver yasso. So Then There came walking on my eyes and I thought I remember thinking whatever I don't care what just happened like he's here. He's healthy. I just want to spend that one hour of bonding with him. Yes. And so I was very I was so looking forward to that. It was really important to me. And so I took him and I tried to nurse and the nurses came and grabbed them and they're like, he's not breathing. I was just kind of in shock so they took him the kind of work on him a little bit. They gave them back to me to go ahead and try again. I tried again and then they said we're sorry. We're sorry. They grabbed them again in came NICU doctors and a whole team of people and they just started working on him and all right there in front of you right next to me they were working on him.

12:04 It was just I was just watching because there was nothing I could do was just so traumatic and do they were able to get his breathing under control or whatever they have to do to keep him to make sure he was stable and then they took him to the NICU and so off he went with my husband and they were just gone and I didn't get to see him for I don't know 6 or 7 hours after that. I'm just because they make you do all of these things make sure that you're able to transport to the NICU which was on a whole other floor. So it was it was just a big separation even though it was in the same building. It was just such a traumatic event Yeah Yeah Yeahs emptiness because you just had him and then he's just gone and you don't know what's going on because

12:59 I mean he left and he was breathing. Okay, but is he still breathing? Okay, you know what is going on? You have no idea. So I was very traumatic. He's been 11 days in the NICU and the day before we brought him home from the hospital my husband and I went to the courthouse and got married. Yeah, we wanted to make sure we brought him home as a family because I'm sorry I'm getting emotional now, but we just went through so much and I had been divorced and my husband had been divorced and my husband was constantly I want to get married Let's Get Married like constantly and I was like, no no marriage is not you know, there's other things, you know, we don't need to be married and then I just saw this little boy fighting and I thought no we we need to make sure that we are family and we bring him home as a family that's not to say that you're not a family if you're not married you are but

13:59 It was just something that really really just called to me and I just really wanted to to give him that and give my husband not to be such a trooper and just everything he went through there was so many things because we weren't married that he had to go through just to see walking and we have no idea we had to get things notarized walking didn't have his last name in the hospital because the babies take the mom's last name. And so I mean, it's just one of those things like well I'm doing really silly. You know, this is this is what's more important, you know, and so so yeah, it's the day before we did come home we went and we we got married and the next day and we have a little picture of him and it's up on our wall at home. It's of his little feet with this girl Band-Aids on from getting blood drawn and he's has our little wedding bands on and it's the cutest picture and it just means so much.

14:59 He just he completed us what it really did and it's almost one of those moments were you was the mom. I mean you grew so much just in that moment. Yeah, you know, you put everything that you wanted the back burner for this amazing boy and your family and I feel like that hasn't changed just from how how much I know you you do everything and anything that you can do to help his voice Drive. I mean if I could get all of my family's I feel like he deserves every opportunity that he can get in this world and if that opportunity isn't available for him then I need to find a way to make it available because

15:53 He didn't ask for this. He has a chromosomal Disorder. So this is just genetics Emanuel Syndrome happens when part of chromosonal Evan and part of chromosome 22 attached itself to chromosome 22 as a third strand of DNA that her but I'm not sure the exact wording but basically chromosome 22 has three instead of two and that's from chromosonal Evan chromosome 22 and it affects absolutely every aspect of his body physically creatively just everything everyday is a challenge for him and he's a happy boy, but there are so many things that he cannot experience Lee. So I feel like it's my job to make sure that

16:48 He experienced is it in some way or another and so even if it's taking him to a different environment like a photoshoot or like Christmas at the farm which we just did a couple days ago and making sure that he's comfortable and finding ways for him to to be there with family be there around other people is important and then knowing when it's time to kind of say, okay, that's enough. Yeah, because balance forcing him into the generations where he's uncomfortable and not helping him get comfortable. And then if he if he if he doesn't get comfortable not okay to leave them in those situations. So sometimes we have to make that decision. We're okay. We have to leave but you know earlier or whatever it may be or he has to go sit in the van, you know and just be comfortable in his face because he thrives on familiar environment and so that is a familiar environment.

17:48 He's much happier. Sometimes, you know when we go to places where it's just too much for him. But but it's so important for us to to constantly make sure that he experiences as much as you possibly can and you guys are all over the place. I mean you RN programs and activities that yeah, like the Adaptive Sports. Amin ya wait, we're just make sure that like I said, we just want to get him into as many places as possible. It's important for him and it's important for the community because if we don't take our kids with Walkers wheelchairs or braces or whatever it may be we don't take them out into the community the community that is not going to have any, you know, his education on them. It's important for us to take him to the park and let other kids see him because when he needs to go to the park to exercise

18:48 But to I love when kids come up and say what is this and they come and check out his walker. I had a kid once I'm cry because he wanted to walk her and his mom was trying to his mama or mom was just like honey. You don't need that but Mom, please I want one, you know, and it's so cute, you know, and so we kind of joke around like Joaquin makes things cool, you know. Yeah, but you know, like right now it's Christmas time and we decorated his walker with Christmas lights and you know, we just we want to show people like

19:27 Hey these get challenges, but that's okay. You don't like to find things. They don't have to stay home like bring them out and had some people who are nurses. Stop me at one time under stop me at a waterpark and said I just want to tell you that it means so much to me to see you and your son and your family here with him because I work with some kiddos whose families don't take them anywhere and I just makes me so happy and she almost cried and I'm just like I mean, I'm glad that that we can kind of have that impact and just kind of show people that it's not the end of the world. You know, what's it's it's a challenge for sure talk a little bit about that when you got that diagnosis of Emanuel Syndrome. You had no idea what it was. No one had any idea what it was all of your doctors were all of your

20:27 We everyone that he had grown up with therapists people who helped them. Right? Not one person yet. Not one person that I talked to said. Oh, yes. I know what Emanuel Syndrome is we got the news at the end of day on Thursday and the next Friday. The next day was a Friday and I just kind of went into mom mode and started emailing his therapist. I'm emailing his doctor doing the research. I found a Facebook support group to join. I just started doing all that research and then Saturday my husband was home, and he kind of always takes over the kids on Saturday morning so I can kind of rest.

21:11 I did just really got to me and I just kind of I pretty much just cried all day because it is scary and you read this and there are around 500 known cases in the world.

21:28 And you read the

21:31 Just just that the stats are scary up to 80% have severe to profound intellectual disability. 89% are completely non-verbal the other the rest maybe learn a few words, maybe some sentences. So there's not one person that has full vocabulary verbal and you know, the motor planning that's just something that he's always going to struggle with the low muscle tone. You don't then you read things like there's not one person with Emanuel Syndrome that has ever gotten married because some of the questions for the new parents coming in or what will my children ever grow up to get married and have kids. Well, that's unknown because not one person has ever gotten married. I never

22:28 Had the capabilities to you. No understand what marriage is and stuff. So that is very scary. You know, it's easier. I think when they're little and you can kind of behind they're still in that little mode where you can carry them around and you don't have to worry about those things. But then you look towards the future and it's just really scary but quickly realized.

22:57 With my husband that that's not helpful. So yes, there are times. You know, you you drive past a football game and you think of what would his life would have been how do you know how this but that's okay, but it's not useful. It doesn't help you get to the next level and we don't know what kind of resources these people had because the research is a little bit older and there's so very few people that have finished homes. It's hard to to know what his future will look like they also said most kids were some kids that learn to walk with a walker will walk around the age of 5, will he started walking with a walker at 8 to 3 already pushing so he's already

23:58 And you know talking to his speech therapist was amazing. I kind of told her about the intellectual disability and how I was really scared about that and she quickly told me the same thing which is stuck with me is we don't know what kind of resources they had technology is amazing right now AAC which is augmentative and alternative communication has grown so much and he has gotten started. So young. He's already learning to get in and out of programs. She and she's just completely feel 100%. He is going to be communicating soon. But let's talk about the type of communication device that he's using he's not using just a regular tablet with a fingers here and there right eye gaze device, which I don't even know how to use the hat right so

24:53 We got started with a iPad and he was really struggling with trying to push the buttons to communicate. It was very very challenging for him and it was very frustrating for him and for us because we couldn't get him to to work with it. And it was just finally my speech therapist said or his speech therapist said, I think you really need to find an AAC specialist. How do we do that? She said I don't know. I'm kind of new to the area but caught your doctor and so I started asking around at his therapy locations and all of them said the same person. You've got to see a Nicole Meyer. She's amazing. She's one of the top in the country and really so I got in on the waiting list thankfully somebody canceled and we were able to get in bed already been waiting list for about 3 months. Okay, but we got in and I am they called me and said we have an opening. Can you make it I absolutely can make it. I will cancel everything.

25:53 Plan was initially to go for a two-part evaluation where she would see where he was at suggest plan of action, but we've ended up sticking with her and she's been amazing. You been going to her for about seven months. Now we've worked on so many different machines and one of the first things that she told us when we took our little iPad in with our app with the push buttons was are you completely stuck to this because I think it might be beneficial to look at other options. And I said, I will do whatever you want. You're the expert. Yeah. I'm so you got us started with eye gaze device and wow. It was amazing. I think that the first moment.

26:37 That I really realized this is this is his thing i gaze communication is his thing was he was working on it and kind of fuse. It's it's basically a communication device but with an additional camera either on top or on the bottom and it tracks their eyes and so we follow their eyes everywhere and they can start programs without a programs communicate go into different things. It's very very very cool. Very amazing and just Technologies so great, but he actually and I didn't I feel bad now because I didn't think that he was capable cognitively. I didn't think he was capable because it never shown any interest in puzzles are puzzle boards. He just didn't ever really was into it. We had several little wooden puzzle boards where he just had to match up the animal never really took to them but

27:37 Finish the puzzle using eye gaze device

27:41 And it was amazing. It just blew my mind and I will always remember moving the pieces with his eye and pieces with his eyes. So the left screen had the puzzle pieces the right screen had the picture and so he had to move a lot left the piece on the left and move it to the right. I put it in the right place and he's finished it and how old is he? He's for early for that time, but he's almost five now, but wow, right when we first started and he looked over at me and his eyes were big and he had this huge smile and I owe me and my heart just a million. Just wow. I was just I was just bought. I was just absolutely amazed some of the things that I've been able to see him do for the very first time like walk with a gait trainer bike ride. I never the only way he could stand really still the only way he can stand or walk is with the board and the only way he could do that before he had equipment.

28:41 Was with us holding him. Yeah, and so we can only do it for so long before our arms got tired or you know, and so he couldn't even stand just up against the couch yet to have a lot of support before where is now he can stand up against the couch. But the first time I saw him walking with a gait trainer, I just cried I cried and cried. It was just amazing. And so just seeing these equipment I get spice all of these things are just so amazing to me and just really help our kids and I I feel for kids who are in parts of the world. I know that don't have access to these devices into this equipment. I've I've gotten messages from people in Brazil who don't have that in their messaging because their child has Emanuel Syndrome and they're like, how can we get this and I'm like, I'm sorry. I don't know like, you know, it's just it's hard. You know, I'm there so many

29:41 Out there who have these challenges not just Emanuel Syndrome. They have a challenge. I really need this kind of equipment and Technology.

29:55 So yeah. Wow.

29:58 This is what I just like it makes me so excited. I just hear about where he started where you guys started where you're at now, he's ghosted developmental preschool. He's in his second year and you know, he loves school when he first started. He didn't want to play any other kids. He prefers idli by himself. Now, he play side-by-side with kids and passes toys and it's just amazing and we had talked a little bit about the bookstore at the library right now. And I think it's special to share his love of books. He loves books so much and I feel like books that he's always loved books since he was a baby. He loved the books and the books. I feel like one of the things that he can control and he can use independently and play with buying he doesn't need an adult to help him.

30:58 Anything with books, but when he first started scooting books were a big motivation because scooting was a big deal because it took a long time. He was over two years old when he first started scooting and we would put a book kind of far away and we'd make him Scoot and come back and you know, and then the same thing with walking he wanted to walk with wide hold a book on one side and his therapist would hold a book on the other side or I mean, I told a book at the end of therapist would help him walk in his gait trainer and help guide him and he'd walk over to me for the book read it once and then we do it again Tummy Time pillow my cell phone. He really has always hated any kind of work with his arms. And you know, we can do that where I'll put them on a platform swing and what kind of hold himself up and I'll put a book from the ground and was going to swing so he's getting a lot of difference sensory stuff there, but the book is what keeps this attention if the book wasn't there.

31:58 Yes, exactly. So books for a huge huge love for him and we're so lucky that the Meridian library goes to the school once a month today actually the Meridian Lawton mobile book library was there parked outside of a school and they go and when he was doing his observation for developmental preschool. They have to go through a two-week observation to see if he'll be a good fit for school on the last day is little pack that came home. So cute, you know and there was a book in there and I was like, what is this booking took it from school. Nick was a note from the library and it said they were going to be visiting his school every month and he be able to take home a book and the book was draft can't dance which has such an amazing amazing story and it's still his favorite book, but we love sharing books like that that are that have such great.

32:58 Razor Gerald the giraffe, you know, I can't dance but he does because he finds his own music and everybody can find their own music and it just we read it to him. All the name is actually really worn out right now, but it's his favorite book and it was from the library and it's just something is just really important to him. He recognizes the pages you can turn to a page and he gets so excited and just makes me wonder if I going back to the eye gaze device how much he's actually comprehending from Facebook. I mean, we don't know unfortunately, but who knows maybe there's a reason why he loves it so much and he's actually get this or he's understanding like oh, okay. He says I'll from Gerald.

33:53 Yeah, so he started interacting with books a very early on I loved books growing up. I always had a book in my hand. My sister's made fun of me because I had books I carry with them everywhere. They will go to the mall shopping in the middle of the mall with a book. So having books was so important. So I made sure that he had a ton of books when I was pregnant. I just wanted him to always have books and right away. He just loved books to really really just took to them there was a book in particular and it's just a simple ABC book, but it's one of those. You can touch them and you have different like it's not Texas. I think it's a thumbprint book. So it feels like a thumbprint. Well his dad started reading that to him but he kind of started singing and tapping on the hook and it was so funny because after that and he was he was very very young after that. He would get a book and I would see him tapping on the book.

34:52 And I'm like why is he doing and then I realized it's because his dad was kind of doing a little beet to the book. And so he thought I'll book 4 read like that and he just kept doing that for a long time. He would do that to book and it was this but I want to say gosh, I mean it was just right away. Yeah, I love her books was right away and he still loves him so much and you were you were telling me about when Alex your husband took him to the library for the first time what happened? So I think I was pregnant with my daughter and he took him walking to the library and the walking this is Joaquin when he walks into a room if he walks into a room, he looks around and he is completely unimpressed. Nothing is oppressive to him. He does not care about it. It could be Santa could be there and he does not care or it's just over stimulating and he wants to get out of there.

35:52 He just doesn't care but when he came into the library his eyes were wide and he started scooting to the books and my husband's had that he would pick up a book look at it toss it to the other foot and my husband was just following him around picking up books and putting them bad love that.

36:14 So adorable and it's just so lucky to have found your book and it's funny because the Meridian library also has a program where through the school they will send home books. If you sign up for it during the summer when they're not in school and so I got this package in the mail and I completely forgot that I signed up for this and I'm like, what is Library sending us and it was two books and a library card for him. Do you just never but I opened it up and I San Joaquin look look what you got in the mail and he scoots over and he's just like list of his hands to grab the books from me and I gave him the books and he's just looking at them. And those are the actual those two books. He sent over the summer where a couple of his favorite books as well as really really great support system for us, even if they don't realize

37:14 It's important. It's just so amazing for him to get books in the mail. What a wonderful thing for him when he just loves them so much.

37:28 Well, I am just so honored that you even had me here with you or you have been amazing. You're so great with walking every time you see him. You're just so patient. He really needs that patient type working with him and you've been amazing. So I'm glad you're here with me. I can't wait to watch him grow and the new things that he's going to learn and a game-changer the little game changers. And yes, yeah. It's going to be it's going to be better this time. I think so, too. Yeah. I think he's going to be ready for it. Yeah, his dad will be there. We'll have to get him to back off a little bit. I'm going to get him a little helicopter had such a helicopter parent. He was like why I don't get it. Nevermind. I love it. Well, I'm just so excited to see him and watch him progress cuz he's a light and thank you for a tional. Thank you.

38:27 Typically developing kiddos. He's a motivation in a little tiny piece of the pie in a cast device to happy that you're part of our Lives to go but I think that if anybody I just think he's going to change the face of Emanuel Syndrome right now. There's a lot of kids out there and we're just really working on getting those parents. So, you know, just really

38:54 Help get your kids out there. Let's let's do it. You know when they woke up Emanuel Syndrome. They're going to be seeing these kids walking Yep. They're going to be seeing them communicating with Mac devices and they're going to see them dancing and they're going to see them doing all kinds of stuff and I'm really excited about that. It's going to push them out of that box because of where you first saw Emanuel Syndrome you saw this little box and he's not going to get out of it and right but here he is. Yeah exactly. Exactly and I think that's why you know, just as a parent in general, you know to let you know we want them to push those boundaries. We want them to to go outside their box and try new things. Yeah. That is the same case with arcane.

39:43 Well, thank you Rachel. I'm so glad you're here. You are so welcome.