#135: Chino’s Story: An Autism Update with Jocabed
TODAY’S GUESTJocabed is a mother of 3; two girls and a boy. Her son is on the autism spectrum. She is a certified teacher with a Master’s in Special Education. Currently, she is serving as lead pastor at Charis Community Church in the city of Reading.
- An update on Chino and how he is now.
- Raising kids in a bilingual home.
- The importance of religion and navigating that with your family.
- Safety concerns for children with autism.
Transcript for Podcast Episode: 135
Chino’s Story: An Autism Update with Jocabed
Hosted by: Dr. Mary Barbera
Guest: Jocabed Robles
Mary: Okay. So Jocabed, thank you so much for coming. You’re welcome. And joining me today, we’ve had had a lot of requests for. How has Chino doing now. And, um, so let’s start with your fall into the autism world. When were you concerned? What were you thinking and when was all that?
Jocabed: Yeah, so I think I, I first became concerned, um, just because of how active he was getting into everything. Um, and I remember him thinking he had no real concept of danger. Um, so I struggled with some safety issues, but I remember there was one day in particular. He’s okay. Changing table and I’m changing his diaper. And I don’t remember what he did that I scolded him about. And I saw this look on his face where I could just tell he wasn’t connecting like the scolding with what had just happened. And I was like, there’s something going on?
Mary: And how old was he?
Jocabed: He was just under two.
Mary: Okay. And, um, at that point you had another child, a little under three. Yes. She was just under three. Yes. You had a newborn
Jocabed: And I had a newborn. Yep.
Mary: And so were you thinking autism?
Jocabed: Um, so honestly, I didn’t know at first I wasn’t sure. Um, my mom actually gets a lot of credit cause she’s like, you know, have you ever thought of autism? And, and she knew. That I could take it, you know, it wouldn’t offend me. Um, and so when I started looking that up and then I started seeing, I remember seeing stuff about sensory processing disorders and things like that, and it, it all kind of started making sense. And after some reading, I was almost convinced.
Mary: Yeah. Okay. And at that point, did you call the birth to three agency?
Jocabed: Yes. So, um, I don’t even remember how I knew. I asked his pediatrician.
Jocabed: Yeah. And I actually remember his pediatrician said, I think you’re just comparing him to your oldest child, um, because she’s doing so well. And I just, in my heart knew that I was not doing that. I knew I felt something was wrong. Um, and he said, I can still give you the referral if you’d like, and I said, yes, please do so.
Mary: And you were a teacher by training?
Jocabed: Yes. At that time I was a stay at home mom. Um, but I am a certified teacher and I had worked, um, a few years before that.
Mary: Okay. So, um, like we said, you had your, your hands full,
Jocabed: Very full.
Mary: And I remember, um, it was right in, uh, around 2010 and I had just started working for the birth to three agency. And my county, I worked there for, uh, with a contract for about six years, seven years. And, um, do you know. Was one of my very first clients. And I think he was the first client that I went to that, um, didn’t have a diagnosis yet. It was, we were just trialing things out. And I remember not only not knowing anything about you or your family or Chino and, you know, coming in and nobody was talking about autism. So I’m like, Ooh, I wrote a book on autism and now I’m just kinda like dog I’m here. And, um, And out of, I say this in my book, turn autism around in the first chapter, I say out of all the hundreds of kids that I’ve worked with that Chino at 20 months, uh, reminded me of Lucas at 20 months. Um, when my husband first mentioned the possibility of autism, because for my point of view, he was, he was kind of a quiet kid. He had a couple of what I now call pop outwards. Um, And he had, you know, a newborn sister and he had, uh, you know, a year older sister. Um, and he was just kind of getting into things. I remember you had like taller, um, stools for the kitchen over from the dining area. He’d knock them over, but then the bassinet or the little child seat could be there. And I was like, whoa, whoa. We gotta like really safety proof.
Jocabed: I remember one time. Flipped over the, um, it was kind of like those rocker chairs. Now they have like rock ruse. It was similar to that. It just didn’t like move, um, on its own. And I remember Chino went up one day and just boom, flipped it over. And the baby was sitting in it. Um, she was strapped. So all was well, um, at our household, she was fine, but it was a really big scare. Um, another scare I had, she was like laying on a blanket, you know, I don’t think, I think every mom does this once in a blue, you got to run and grab something. The baby doesn’t flip yet, or, you know, it’s a one month old. Um, and he. The entire blanket off the couch with the baby on it. Oh my gosh. Um, and I mean, we have nice plush carpeting, so it wasn’t terrible. She wasn’t hurt, but it, these were things that were like, I have to do something.
Mary: Right, right. And your husband was there, but he was working. And so you’re trying to manage all three.
Jocabed: Yeah. So at that point I was a stay at home. So that meant that, you know, my husband had to pick up as many hours at work, you know, as he could. Um, and he worked third shift. So basically we’re talking about, um, having a toddler slash preschooler and then having my son and then having the newborn, getting. At all hours of night with the newborn and still having to be up in the morning with my son first thing.
Mary: And he was, yeah, you had to watch him like a Hawk. Um, yeah, so, um, we do have, um, one of the, one of the things eventually as, as I got into my work with Chino and Jocabed and her husband, um, you know, it was before I really had. My established four step process and everything, but I had worked for years with the verbal behavior project. So it was just like applying this to really little kids with and without a diagnosis. And I remember. Both being very motivated to learn and wanting to sit and learn exactly what we were doing. And I remember having my stat bag, actually the screening tool for autism and toddlers in my car, because there was another little boy that, um, I really couldn’t tell and we really needed to figure out what was going on with him. And I had it in my car and I said, Hey, do you mind if I bring it in? Because at that point we were thinking autism, you were on a wait list. It was a six month wait list at the time. And so I brought my, my stat bag in and I remember that that day, right when he was two, um, he, uh, failed, he got zero, or you gotta remember that 4 points, which is like scoring zero. It’s like over the two ones, I, a cutoff for autism. And he scored, he got no credit for any of the sub tests, including the doll. Test where you hand them a baby doll. And all he has to do is put it in the bed or, or pretend to feed it. And, um, just very characteristically. He just stirred the cups with the spoon and failed the test. And, and then, um, Getting those videos. And one of the really great things about Jocabed Cody’s mom, Jenna, who was on a previous podcast. We can link in the show notes as well as other moms. Who’ve been a part of the journey who share, agreed to share their stories in the book or my courses or my webinars is that. Because I have all these videos I’m able to now help people from over 80 countries really demonstrate exactly what happened, because we didn’t know how things were going to turn out either. And so one year later I was almost done working with Chino because when he was three, he was going, going to start with another agency. Um, and so I brought my stat bag back and we did redo the stat. Not that that’s really. That’s not a part of the stat. The stats used to screen out or in autism, but I personally think it’s a really good pre and post. You can see some major growth if you do it more than my progress, a lot of progress. And so we will link the pre one year. Uh, the two year old video of the doll subtests and the post, which he was three. So when he was three, he didn’t score. I think he scored 0.7, five or something like that. I mean, obviously he still had autism. He was diagnosed with moderate, severe autism when he was two and a half. But, but it showed major growth. Like instead of just putting the baby in the doll, he said, night-night baby wake up and he’ll make cocoa. And I couldn’t understand what he was saying, but he was pointing and he was trying to show me more and. I mean all of us in the room, we were like, we were all amazed.
Jocabed: It was pretty awesome.
Mary: We’re going to link those in the show notes. Those are a part of the book resources. Um, you know, Chino is front and center in chapter one of my books. So you can get along. Free book resources with, or without book purchase at turnautismaround.com. But, um, it’s been a great journey, but, um, Chino is also in the safety chapter, um, because of the safety issues, knocking things over and with the newborn baby, which is not an uncommon thing. Um, he starts chapter three of my book with, um, well maybe you want to tell the story. Do you remember the story?
Jocabed: There’s a lot of safety stories, which one in particular,
Mary: The one where the dresser drawers were empty.
Jocabed: Okay. So we go in his room. Um, I don’t remember if it was time to get dressed or, you know, what part of our routine we were at, but there’s no clothing and it’s room and I’m like, you know, where where’s the clothing going? Um, so I noticed that, um, the window is open. And so there were two windows in his bedroom and I noticed that the one is open. And when I look, um, all of the clothing, I don’t know if he had brought the top of the window down or the, and he went under three at this point. It’s not a huge kid. I mean, he’s a normal looking two and a half year old and all of a sudden. The second floor, window of an older house is open and all his clothes, all his clothing, there were, there was clothing like on the roof, like on the awning of the back porch. And then, um, my husband saw some all the way on the ground, like her backyard. Um, and I remember the one night I walked in and he, what he did was he propped up on like, um, the radiator and brought the top of the window down. He had his hands out and he was just like looking at the sky and I’m like, whoa. So that’s when we were like, okay, it’s time to secure these windows.
Mary: Right. And he also left the house times and you know, they weren’t on a major highway, but you know, since high street and the neighbors brought him back and I remember. And Lucas did really unsafe things and escaped. And, um, but the, the roof story is like, whoa. And I do know personally kids that had gotten out of windows and been on the roof. So, so like window locks and then you have to make sure. Adults can open windows in case of a fire. And so there’s all those actually,
Jocabed: We actually ended up getting like a, a door chime. So when, whenever the door would open, we would know, okay, you know, the door is opening. Um, and I actually got to the point where to this day I feel kind of sad that we had to do this, but it got to the point where I had to put a lock on the outside. Of his bedroom so that if he did wake up before me, because we had some issues with like sleep regulation and staying asleep. So if it was three, four in the morning and he was waking up without me, I knew he wasn’t trying to leave the house or get himself into trouble. I remember the one day, um, I was supposed to meet my husband for a morning, like grocery store trip. He was getting out of third shift and I was going to go meet him. And, um, at this time, he was already getting, um, services, um, with you. And I remember that we used to say like go bye, bye when it was time to leave, but. I learned that day that, um, you know, he needed to know things very specifically and very at the moment that it needed to happen. So I had my oldest daughter, I just had to, I ran upstairs to grab a brush. I had already said we were going to go by, by, I ran upstairs to grab a brush and I hear like a minute or so later. My doorbell. My door’s open and I’m like, why is my front door open? And I go look at the, at the porch and there’s a woman holding my son, basically saying he was right outside, just hanging out by the car, you know? Cause I said go bye-bye so he’s like, okay, this is happening right now. It was really scary. And not just that, you know, as moms we’d like to feel like we’re on top of our kids and we’re watching our kids and for somebody else to bring their kid back to your doorstep, you know, it was like, wow. Um, so that’s when we really started noticing a lot of those safety issues.
Mary: Yeah. Yeah. And you have to use, you know, in chapter three of my book, you know, gates and, and look, and I kind of took first and, and just, um, Being, but because I mean, you also need to sleep and you have to stay awake and our kids tend to have sleeping issues, which, you know, just complicates the thing. And then your husband’s on a different shift. And I, I dealt with that when my kids were little too. Um, it just gets really. Really complicated
Jocabed: And it’s overwhelming. Yeah, yeah, yeah.
Mary: Yeah. I feel bad for, for, especially the parents know of, you know, little kids and now we’ve got, you know, COVID on top of it. I know complications. So back then, I know you had a big desire to raise your kids in a bilingual household, um, Spanish and English, right?
Mary: So, um, and I, at the time I had, you know, very little experience with that. And, um, so we kind of agreed that maybe we should just try to teach him like 10 words in English, because that’s what I would speak. I mean, I could learn 10 words in Spanish as well, but it’s not so much. Yeah, I want or what you want, but like when he go to preschool, when he’d go to school, the language would be English, right? So, so it’s like, yes, typically developing kids can pick up two languages pretty, pretty easily. But, um, especially if, if your husband and you are speaking both languages, but when you have a very delayed. Language learner. I think, you know, the researchers in the bilingual field feels strongly that it shouldn’t matter and everything, but in my experience, it, it tends to matter. I have a video blog on it and I have a podcast with Maggie. I think Maggie, um, we can post those in the show notes. Those are about, uh, bilingual speaking trilingual, but what. What were your thoughts you had started to raise your first order? Um, bilingually until like what, what were you feeling?
Jocabed: We spoke a lot of Spanish at home, um, with my oldest child. And so to this day, she’s the one that understands it the most. Um, she doesn’t speak it much, but she understands pretty much everything that we say with Chino. Um, I think we did the right. Yeah. At the time, because I’m coming from a child who’s getting older and he just, um, had so many like aggression issues and frustration. Cause he couldn’t express himself at all. Um, usually with, with bilingual kids, it might take them a little longer to sort both languages out, but they do fine in the long run. Um, but with Chino we wanted to make sure like, you know, he’s already delayed. Can you hear? Talk at all, like, will he use language? Um, and once we started doing the combination of that and the program, I mean, he took off, he started learning words like right away. So, I mean, he understands a little bit of Spanish today. I think that because he’s surrounded, he hears me speak to people in Spanish. He hears it at church. I think there’s still time. There’s still a good time. It’s always time he’s 11. Yeah. So I have a little pre-teen now he’ll be 12 in a few months.
Mary: Okay. Um, yeah. And so you, you think you did the right thing and so, but it is a, it is a personal decision and there’s people from all over the world listening, right. Families speak three languages. And if you think about like teaching sign language or teaching the first words, you know, if you have to teach it, you know, um, if you were trying, if I were trying to learn a second language, you know, and I was, but. And I was just concentrating on Spanish or Japanese, but now if you said, you know what, we’re going to try to teach you both languages at the same time, at the same time.
Jocabed: And you were already having trouble even acquiring one language.
Mary: Yeah. Yeah. It would be a little tough. So yeah, I do say. Um, in my experience, not based on real research, but I don’t think there’s real research with kids with moderate, severe autism learning two languages at, from the start. So I’d say stick with one and stick with the language. Most that is going to be most accessible to the early intervention professionals to preschool and to regular school.
Jocabed: Not just that. But, you know, with, with the program and everything you taught us, you know, things had to be very consistent. So you wanted to make sure, you know, they had to be consistent, repetitive, like it wasn’t all the time thing. Right. So you want it to make sure you weren’t really switching things up. Right?
Mary: Right. We literally go water, water, water. And if half the time, or if her husband was like, oh, I’ll go up. I go up, I go, you know, It, that doesn’t mean make it bilingual and, and that also doesn’t make them conversational in either of those languages. So we’re not talking about conversational, we’re talking about building blocks manually, then, you know, other forms of verbal behavior and it is really complicated. Okay. So now. You’re a teacher and you’re also a pastor at a church. And so I remember also back then that, um, you did have a desire early on to, you know, you were big religious family and you wanted to bring your kids to church. And that was a struggle for Chino to, you know, participate in Sunday school and keeping your eye on. You wanted to be an active member of the church, not just sitting there in the pew. You got all these safety issues. Now you have three little kids and one with issue know with moderate to severe autism. So, um, how did that go with the religious, um, participation early on?
Jocabed: Um, so I think there’s a few things I have to speak to that. I think that, um, I was very blessed that I had a good support system. At church. Um, I had a few close friends who had interacted with Chino enough for him to feel comfortable around them. Um, but it was still a very big challenge. Um, actually he just went to, um, on Wednesday nights we have our midweek service where we do like a Bible study and like the adults go and the kids and, you know, everyone’s in their little groups and he just, I want to say two weeks ago or so he just sat through it. A Bible class, um, successfully. So he’s almost 12. It took a long time. Um, a lot of it was having him with me having the support system. Um, there were times where I do have memories of, um, getting to church and him not even wanting to go in or tantruming severely there’s music, there’s people it’s, you know? Yeah. And then again, Chino could do it. There might be someone whose, whose child, you know, has more of that in the sensory issue in that area, you know, with like sounds and stuff. But he did fine, honestly. I think now it gets to the point where, um, actually I remember us taking like a portable DVD player with headphones and headphones. Um, we have like box with toys. Um, and so I think because our church’s like charismatic too, when there’s a lot going on. And I think it kind of drums out a little bit of like his noise. So it was okay. But if it was probably a lot more traditional and quiet service, I, I don’t know how we would’ve done it. Yeah. Yeah. It was hard. Um, and still today, I mean, it’s probably, he, religion is important to him and spirituality. And, and his relationship with God are important to him, but he just views it, I think very differently. Um, it’s hard for him to sit through an entire service still. Um, so there’s just a lot of things that we do at home to reinforce. Um, that, you know, the importance of the religion.
Mary: Does he know that he has autism. And how did you tell him?
Jocabed: Yeah, so he’s very, very well aware, um, that he has autism. I don’t remember the exact moment, but I think it was around second grade and I did sit down and talk to him directly about it. I wanted him to be able to advocate for himself, um, identify when he was feeling uncomfortable and, um, all those things. Does he feel? I don’t think he feels badly about it. Like he’s super different, but he’s very well aware that that his needs are different. Does he have friends with autism or is he’s in general? He’s in regular ed. I feel like that might be one of the reasons for why his friends. He has all typical friends. Yeah. And he doesn’t really talk to them. Like I have no, it hasn’t gotten to that point yet. Um, his friends know that, you know, he might struggle a little bit or have a bad day here and there. Um, but I think. He’s able because he’s so high functioning, I think he’s able to do. Okay. Yeah. So he’s fully conversational. He’s fully conversational. Oh, he can, he can do math. He’s great with math. He actually, um, his school does this, um, national math challenge and, um, In his school district and in his grade, I think he placed like second place and got like a national honorable mention or something like that. He’s brilliant with math. Nice. Um, again, talking about, um, the language arts piece, he can tell you everything that happened in a story. He can comprehend it. Now, if we were saying, how do you think the author? At this point, you know, those questions that that’s tough for him still. Why, why do you think the author chose to do this? Or why did that person say that those kinds of things are still difficult for him? Can we get him to do them? Yes. Usually it requires somewhat of a meltdown. I don’t want to do this, you know, it’s very non-preferred. Um, and how about writing paragraphs is that he can do it. He’s great. Yeah. But he doesn’t, he doesn’t like to do any work. It’s just something. Yes. I know. You know, people might think there’s a lot of kids that don’t like school or don’t like to do something for him.
Mary: Requires a lot of effort because it’s not the mechanics of writing. It’s, it’s the comprehension, it’s the putting it together, organizing your thoughts. Right. And then writing it, spelling, and spacing. Um, and you know, um, I know a lot of older kids that go on, you know, with autism and they’re pretty indistinguishable in some ways, like they do. Um, dictation and typing, um, you know, because that at least take some of the fine out of it. And in addition to that, and you had also shared that he also has a diagnosis of add at least a medication.
Jocabed: Um, in kindergarten, as I was trying to teach in my own classroom at work at this time I was back to work. Um, he started kindergarten and I would just, I would get phone calls like every other day. Like, it was just so hard for, um, his special education team to find a program like that worked for him because he’s so high functioning, but then he has all these like emotional regulation struggles. Um, I even remember at a time wanting, um, You know, a certain therapist wanting to categorize him as ed, you know, emotionally disturbed. Um, and I really didn’t want him to end up in that kind of classroom because I didn’t think that’s what he needed. Um, eventually a few years and after some meds and, um, weaving in some emotional support, but keeping him in the regular ed classroom, he started doing better. But he, he can’t go to a full day of school without taking his medication. Um, I had him seen by a psychiatrist I can around first grade. Cause we just couldn’t. Yeah. And I had always promised myself I wouldn’t do that. Uh, yeah. So that was huge for me. I cried with medication. Yeah. That was huge because I’m like, no, I don’t want to do that. Um, and then I realized. This is not so much about what I want. I need him to function in school. Right, right. I know you have to function in society.
Mary: So, yeah. And I did a podcast episode with Dr. Michael Murray. I know, I, I probably say this every time, every episode, it seems like I’m mentioning that episode. We can link it in the show notes. Um, but you know, the medication that Lucas has been on since age 18, literally changed his life for the positive. Um, and I’ve never been really against medication, but especially with kids that aren’t conversational, like can’t really tell you how they’re feeling or just so many side effects that, you know, um, you, you, you could end up making the matter, even worse. So I’m interested to know, like, as a teacher, um, as a teacher in general, you know, now you have your master’s in special ed, which was recent. Congratulations.
Jocabed: Thank you.
Mary: So what advice would you have for, for general education teachers? Um, you know, after all that you’ve gone through. With Chino and with getting your master’s degree, I’m sure like kind of come full circle now.
Jocabed: Yeah. I think that the relationship between, especially for kids like Chino who are not in like a self-contained classroom, um, I think that the relationship between the general education teacher and the special ed teacher is key. Um, I think that, um, having a behavioral system in place.
Mary: Is huge having a behavior analyst, preferably overseeing the case, the school, the classroom. That’s not to just put out fires, but to actually be a part of, is not just if he’s having a problem, exactly. His whole school system. So that. There’s a Baton passing. Yeah. There’s somebody that’s going to focus on the positives and going to focus on preventing.
Jocabed: And I was just going to say prevention. Um, prevention is key, and if you’re focused on the positives know. Then just prevention. I honestly, um, having Chino helped me, uh, in the recent, in the past three years or so, I’ve had two or three students with autism in my classroom. Um, and I’m a foreign language teachers. I’m a Spanish teacher and, um, they’re teenagers, you know, juniors, seniors in high school. Um, so it’s very different from Chino, but they’ve kind of reminded me a lot of him at the same time. There are kids that if I had not read their IPS, I probably would still know that they were on the spectrum. You know, Chino has just opened up my eyes so much to meeting students’ needs. But the biggest, the biggest thing that I see in the educational world is that kids like Chino are often falling through the cracks because they’re so high functioning. So you have all these, you know, you have A’s, um, even, even how fast he would finish his work was an issue. Right. So he’d finished his work really, really quickly. Um, and then he’d be bored. So he started looking at other things to do, right. And they involved misbehavior. So then he would, um, get enrichment, which was. Busy work and he knew it was busy work. So we, because again, he’s high functioning. He’s smart enough to understand that. Um, and so I think when you see the high functioning, but you still see those behaviors, you know, it’s, it’s a key indicator that there’s something deeper going on. Um, and you just, you have to program and program and, and try and prevent as much as you can.
Mary: So if you could pick out of any teacher for a general ed teacher for, for Chino, what kind of qualities would you be looking for to say? Yeah, I think she’ll be really good.
Jocabed: Consistent. He had a teacher, um, in one of his grades that did really, really well. He had a little bit of a hard time going into the third and fourth quarter, but he, that, that was his best school year. And the one thing was she was very, very routine oriented. You always knew what to expect. Um, so being high functioning, you know, with, you know, high functioning autism, he needs. That whole routine, the structure knowing. Um, but there were some issues with the lack of flexibility. Um, so it’s, it’s so weird. Cause it’s like there has to be a blend of both there has to, and that’s hard and that’s really hard for some teachers to do. Right. You know? Um, and the other thing is, for some reason, I don’t know why Chino has always preferred males.
Mary: And you don’t get a lot of those in elementary school.
Jocabed: No, you don’t. So like, um, he’s had honestly, the, the fact that his BSCS and NTSS workers have been able to go to the school with him and were males made the difference.
Mary: So, does he get those support services now? Still?
Jocabed: Not anymore
Mary: So that BMC has a behavior specialist. TSS is like now RVT or, yeah.
Jocabed: so we have, so the TSS support, um, had been phased out maybe two years ago. Okay. And then, um, we just completed, um, uh, at the end of May we just phased out, um, the behavior specialist.
Mary: Okay. So, um, yeah, he does do out many years, many had that kind of support. Yeah. And, and one of the things I do want to mentioned, um, there’s a lot of people that, you know, say high functioning versus low functioning and, and it is, it is really, um, that’s one of the problems is like labeling a kid like Chino as high functioning, and then. Behaviors or just because he’s being bad or he’s speeding.
Jocabed: People think that in public, like sometimes. Yeah.
Mary: And, and so I did do a podcast. Yeah. So actually one of my very first podcast on high functioning versus low function. So we can link that in the show notes because within each child or adult there’s the strengths and their needs and that’s it. So he could be super happy functioning and math and, and X, Y, and Z, and B moderately functioning. These other skills and he’s a complex individual and he’s growing. And so every year, and then it changes things like a teacher that’s super flexible, or a teacher that’s super positive, or you have, I mean, you’re coming up to puberty soon before, you know, last year when we had COVID. And so every time you turn around. Um, there could be a whole other set of variables that are affecting him, just like you have two typically developing daughters and they also get affected by different things. And so there’s no such thing as normal versus abnormal. So then there’s no such thing as, you know, smart versus stupid or high functioning. And so we all need to keep that in mind. I think. Um, yeah, consistency is what I look for. I’d look for. I personally look for therapists and teachers who are willing to learn who are willing to work with me and not like, I don’t care, take somebody off the street. They don’t need years and years and years of experience, they just need to know that the family is the expert.
Jocabed: Absolutely. And that’d be that school and home. Relationship is also very big. Um, and I am thankful for that because the, the schools that, that Chino has been in, you know, they, they are always saying, you know, are you seeing this at home? You know, what’s going on at home? What’s your routine like at home? Um, and of course, as a mom, I’ve always advocated for that too. Um, but it’s just, I think it all comes down to this. And, and for those who watch, who may be educators, um, you know, it’s all about relationship building. If you, if everyone, like, if you know your student, you’re gonna want to service that student, you’re going to want to do what they need. Right. You’re going to want to meet them where they’re at. And, and that’s what it’s all about really at the end of the day.
Mary: Yeah, I think that’s excellent. So, um, any other advice for like a parent who is just seeing signs or just a diagnosis? If you could look back, um, you know, a decade ago, what, what advice would you give to yourself back then?
Jocabed: Um, it will be okay. Right. Because at first I felt like I was drowning. Um, I felt like I would never get the hang of it. I wasn’t enough, you know, all these things. Um, for me the biggest things where it’s going to get better. As long as you, the biggest thing is, you know, when you have your home routine and you decide what structure you’re going to have, you have to have, you know, your child at the center of it. Because sometimes, you know, we envision things a certain way and maybe typical kids can adopt to the way we want to do things, but kids on the spectrum struggle with them, you know? And there might be things that. That you just have to say, okay, this is what my child needs. This is what I’m going to do. This is what I’m not going to be able to do. The more time we spend trying to force a different way or trying to be in denial instead of focusing on the needs, the more time we waste that could have been time working toward progress. Um, it’s overwhelming. So I would tell moms it does get better. Um, I think one thing that my husband and I still struggle with is. How much do we force Chino to do? So let’s say we get a party invitation. He hates parties. He hates the music. He hates the people. He just doesn’t like, you know, being in the lounge, he does not like it. So do we, I’m the type of person that says, well, why don’t we find someone to stay with him? Or, or, you know, he can go on a play date that day. And my husband thinks. No, he’s a part of the family. We’re not going to go anywhere, you know, um, without him. And so that’s a whole other thing too, you know, just parents, you know, listen to each other, try to work it out and see what it is that cause it’s a lot of stress too on the parents, like when there’s more than one parent in the home.
Mary: Um, and more than one child
Jocabed: and more than one child, because yes, I’m doing, what’s going to work for chino, but then as they’re going to work for me, And at the end of the day, someone might be upset, but you just got to make it through the day. Yeah. And just survive and do what’s best. Yeah. You know? Yeah. Just be resilient.
Mary: and it could change. Could, you know, you might decide like today w you know, we, we’re not gonna make him go to the party. Dah, dah, dah, maybe. Yeah. He could try a half an hour party another time. Exactly. Maybe the stress is stress will be easier to deal with and, um, maybe summertime parties or you’re outside.
Jocabed: And, um, the husband usually tries to provide, I think one thing that he learns really well was like the reinforcement. So he usually tries to do some kind of system, you know, with Chino where, you know, a lot of, of positive, like, yes you can do. You know, we’re going to do this. And, and, you know, it’s funny because I just had a parent, um, in my church office a few days ago, who was speaking to me about some concerns that, that he had with his daughter and he’s presenting them to me and telling me how, when he brings her to church and she gets upset and he has to step out I was almost you that day. I’m like, well, you know, you might have to, by taking her out, you might actually be teaching her that if she misbehaves still got what she wants and took it to go out. So, but it’s, it’s just so nice because you know, you get to help other people around you with this knowledge, um, moms of newly diagnosed kids, or if you think your kid is struggling, Find a support system. Other moms. I remember emailing a complete stranger when I first found out, um, because we had a friend in common and she’s like, you got to email this lady.
Mary: I mean, yeah. Some of my best friends in the autism world are right away. Yeah. Yes, that’s great. So, um, part of my, the podcast goals are for parents and professionals to be less stressed and lead happier lives. So, um, what kind of stress reduction strategies would you recommend for parents and professionals? Maybe something you do or
Jocabed: So as a parent, I think self-care is really big. And I think, you know, when we have a lot on our plates, um, knowing when we need a break is really important, um, because children on the autism spectrum could, you know, you become exhausted. Think about how, like hypervigilant, you have to be, you know, you talk about prevention. Yeah, well, you got to be stressed out. Exactly. Um, so just make sure you build time and routine. The good thing is they, they do respond to structure at least Chino did. Um, so that’s one thing that really helps me, you know, the schedule, um, lots of self-care. I’m trying to think along the lines of like the party thing I was telling you, if you can’t, you know, do something, just know that one day it might change, like you said, because it has changed for us, you know, there’s times where he’s going through stages. Um, and probably don’t be too concerned about what the people around you think. Because, you know, as a parent, it can be rough when you’re out in public and someone thinks you just don’t discipline your child, or you don’t know what you’re doing, or your kid’s just being a brat. Um, that’s very stressful and you do not live a happy life.
Mary: And if you’re listening to the podcast, we’re kind of preaching to the choir because if you’re listening to this podcast, you know, and you’re, you know, whether you’re a professional or a parent, you’re not going to judge other people outside. Cause we all know how difficult it is and, and just try to be positive. I think, you know, I try to be positive with yourself and with others
Jocabed: And, you know, I think it’s just, I think a lot of us being stressed and being happy or unhappy as like where our expectations lie. So you’ve got to be real with yourself. Like how much am I really going to be able to do? What am I going to be able to do? Um, and I had to learn that. My house probably was not going to be as clean as I wanted it to be. Right. Um, I had to learn that I had to have a certain amount of canned food in the cabinet because Moises, uh, Chino would come down every morning. That was the first thing he did come down and pile up all the cans. Every single day, you know, he still remembers that he said that to me the other day. I said, you remember that he still remembers that. And you know, just the little things like that, I couldn’t cook an elaborate dinner. Guess what? We’re having ice cream for dinner today, you know, just give yourself grace and be kind to yourself.
Mary: That’s awesome. Well, I think that’s a great way to end. I look forward to hearing that the next. 10 years from now. It’s like the sky’s the limit
Jocabed: And he’s such an awesome child.
Mary: You are an amazing mom and Abe is an amazing dad. So I think I’m going to do well. Thank you again for sharing your story. On this podcast or videos, um, it has made, um, everyone more hopeful and I do get a lot of requests for, uh, how’s Chino doing now. So now we have, so we have a little update and hopefully, maybe in a few years you can come back and update this more. Thank you.
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