JenniKate Estavillo is doing remarkable things. A child psychologist specializing in children with special needs, JenniKate has taken the enormous step of founding the first school for children with autism and other developmental disorders in Mexico. Based on a revolutionary new system of therapy and social integration, Monarch Therapy School in Mexico City was founded in 2012. Replicating the model of the The Monarch Institute for Neurological Differences, in Houston Texas, Monarch Therapy School is breaking down boundaries and making strides in autism therapy and education. In honor of World Autism Awareness Day, Latin Times' Oscar Lopez sat down with JenniKate to talk about this remarkable school and her experiences working with autistic children.
Oscar Lopez: Is Monarch the only place of its kind in the US?
JenniKate: There are lots of different places. In my opinion, Monarch is the best. There are two other Monarch schools for kids with autism that have nothing to do with the Monarch Institute, one is in Florida, one is in Colorado. But this one in Houston, I mean, they are just incredible. These professionals know what they're doing. And these are the people that trained me. So I went up with three teachers and two psychologists and we trained how to open up a school. The first school that was started was in Guatemala. And this is the first one in Mexico.
OL: So this is the first Monarch school in Mexico or the first special needs school?
JK: Officially in Mexico there are 8 special needs schools. Which means that there are 8 recognized by the school board. There are schools that are more clinical but we're the first school dedicated towards neurological differences, and very particularly autism in Mexico. So, yeah. Not very many people doing this.
OL: What do you think makes the Monarch institute the best in the US?
JK: Um. I think it's most definitely the mix of professionals because, you know, they have social workers, psychologists, they have teachers, they have mental health professionals, they're linked up to all of the medical profession. And the experience the they have advocating...they're all on the Houston Board of Autism, they're very very involved in all of the research. And the model is a scientific based model. So all the interventions that we do are recorded in the great theories of child development intervention. So it's backed up by something, it's not just airy fairy. Because the thing with autism is it hits a boom in 94 is when it comes out as "The Diagnosis of Autism." And in the 90s it hits this huge boom and everyone has Asperger's, everyone has autism, everyone who had ADD nope now they have autism. So it starts to spread. And then between realizing that its over diagnosed and realizing that there is a tremendous need you begin to realize that services are needed. I mean the last reasearch came out that one in every eight children will be diagnosed on the spectrum.
OL: One in every eight? I thought it was one in every 150.
JK: It was one in every 150, then it was one in ten, now it's one in eight. It's huge. The need is huge. Now remember that's the spectrum.
OL: Yes.
JK: It's not everyone is autistic or everyone has Asperger's. It's the spectrum. That's why what you were saying is so true. This whole DSMV (Diagnostic and Statistical Manual of Mental Health Disorders) coming out, it's all politics, well not all politics but it's a lot of politics. A lot of insurance companies that pay, or are having to pay for treatment. It's also government services. The US and the UK are really the leaders in services in what they're providing and still it's not enough. You've got your zero to three campaign where if you get your child diagnosed before the age of three...speech and language and occupational health will be provided free of charge at home. So they're doing a good job.
OL: So this huge increase is that because we're more aware of it now?
JK: Millions of people are asking that question. My personal opinion is that, yes there is evidence that there's a biochemical component, they're mapping genes with characteristics related to autism, they're mapping toxins that are affecting, so they know that there is a predisposition. There is a whole debate with vaccines and medication and all of that.
OL: I mean most of the vaccine research seems to suggest that vaccines don't have much of an impact.
JK: The thing is that the doctor that came up with it fudged all of his research in his study. He was the leading doctor in the area. And then it turns out he had manipulated his study for the results to be that the vaccines were affecting. And what was terrible was that a lot of parents didn't vaccinate their kids and the kids died because they weren’t immune. So yeah they know that vaccines aren't but I do believe...it's the same, they don't have any proof that a diet gluten free or kacine free, which is the big thing right now, they don't have any empirical proof that it does. But I do believe, this is Jennikate's spirit, I do believe that if you have predisposition in your metabolism, in your genes ... I don't know, we live in such a rush society where everything is happening so quickly and everything has to be information now and skills now, we have three year olds learning to read, where before we have six year olds. Then it almost seems like a perfect recipe to create this neuro-developmental issue. They know that autistic brains look differently, as in, there's more grey matter, we know that different parts lights up in scan, so they know it's working differently. They just can't know why.
In the school right now we have 11 students. Nine, no eight are on the spectrum, some diagnosed and one just now very learned guest, he's 12 years old, and he hasn't had any special services, so that's why I think he just slipped under the radar, but I'm pretty sure he's on the spectrum. But what I think is so cool about them is that all of them are hitting their milestones. It's just that it's in slow-motion. And that's what I think is so important. There are no specialists in autism, there are no specialists in neurological differences because you can't be. Each profile is completely unique and there isn't a single other one in the world. You have kids that speak, you have non-verbal ones, you have highly-functioning ones, you have severe-cognitive delays, you have savants, geniuses who are all the way, way out there. You have motor-skills, you have sensory issues, occupational movement issues, you have...there are so many different kinds of the eight that we have. One will have severe tactile defensiveness. So you touch him and he'll scream at you. And the minute he has a melt-down he strips because he just can't deal with clothes and the texture. And you have somebody else that the only way you can connect with him is through deep massage and that constant touch. He gets into the body sock which is this sort of lycra, almost coccoon. And once he's in there you can sort of connect with him. You just can't say 'Oh I know all about autism.' What you can know about is about child development. And you can know about...'Ok so you need to crawl before you walk and then you can run.' And you just follow them through and see when they start hitting their milestones. But there's no way you can say "Oh I'm an expert in autism." That's my opinion.
OL: So what was the need that you perceived in Mexico? I mean it seems obvious in a way to me but what specifically did you think needed to happen or what made you want to go up to Houston?
JK: I think it was a very personal journey. And I think most people that are on this profession have had these incredibly personal experiences. But two things happened to me. Number one I was asked to set up the psychology department in the preschool at Edron. And so what setting it up was diagnosing the kids, or identifying, screening, not diagnosing them but preparing them for a diagnosis. And the school was all for inclusion and all for having them and yes, yes, yes. And then as soon as they got into grade school, into primary school, the school would ask me to kick them out. And by the sixth family, and this was a family that I was very close to because I met their son when he was two, and then he was coming on to seven because we held him back a year. So I'd worked with him for five years, being there, and the whole diagnosis is...there's so much information because this diagnosis came at a time where internet was already flourishing. And because there's no set way that autism looks, so many people talk about it. And so it's really confusing, you don't know if it is or it isn't, and if it is well he'll never say he loves me or...you know there are these deep deep fears which is not true. I mean it could be true for some people but not for others.
OL: And no one is an expert on the issue.
JK: No! Exactly. And even getting a diagnosis - one of the major major complaints that you'll hear, here in the US, in the UK, in Canada, in Australia, is diagnosing. And you have this whole debate of should I label or should I not label. So in places like the US people will say 'I won't label because if I'm wrong I can be sued' there's malpractice and all kinds of things. In places like Mexico people don't know what they're doing. We're even more behind. So there isn't a proper diagnosis, diagnostic path to go down. So I had accompanied this family for so very long. And the school said 'Out, we don't want them.' And it was, it was really personal moment because I sat there in the office and the Mom said to me 'Ok I understand that this isn't the scool for him, you're right, I see your point. But tell me what do I do. And this was, he was seven by then. When I met him at two he was non-verbal, showing all of the signs, lining up his animals, he wasn't making eye-contact, you touched him and it was major melt-downs, no intention to communicate, severe difficulties with any fine motor skills. And he started to speak at age four. He was bilingual, that was reallly cool. He would babble in english and in spanish. It was also my first realization that if you're going to be autistic or dyslexic or whatever it's going to be in English and in Spanish.
OL: Because traditional language patterns won't make any difference.
JK: Exactly. This is the brain structure -- oh english, don't speak to him in English. But it was really cool because he would babble in English and in Spanish. And he was ... he was able, or he was starting to comprehend. And he was really looking for a way to connect. He loved working with me. I loved working with him. But if I said to him, so "Look at this picture -- is he happy or sad?" "He's happy." "Well why is he happy?" And he'd just look at me and say "Because he's happy." There's no way that he could abstract information ... that he could interpret information in an abstract form. Everything was super complex. He would script a lot, all the time. He was scooby-doo.
OL: What do you mean scripting?
JK: Scripting is something they do a lot and some people say it's their way of self-soothing or stimming. But umm ... they will learn dialogues or scripts and then just repeat them, so it's "Hi how are you?" "I'm fine thank you" "Where did you come from?" "Well I came from ... " And it's ... it's not a conversation, this is my dialogue and they start.
OL: And it's a pattern. Like laying blocks.
JK: And they use it a lot. And he would do a lot scooby-doo. Which was hilarious because he was really good at the voices. I would just laugh. But anyway that was the first experience, just looking at the parent and saying "Well where ARE they going to go?" And realizing that there was nowhere that would really accept kids. And I'm all for inclusion, I think inclusion is a really good idea. Provided that the kid that's going to be included and integrated has the tools to be there. Because it's all very well to say "I'm inclusive." It's sort of like saying "I'm wonderful" or something. It's like "oh that's cool." But the poor kid with 19 other kids who had no way to communicate, no way to explain.
OL: And also the teacher who doesn't understand what this kid is going through.
JK: And then the second event, which was really powerful to me...I mean I was already, the events with the families, the last one, where she said to me "well tell me where do I go?" And I thought, we worked so hard to get this child to speak, to get him to, you know, tolerate being around others, to even want to start playing, it's not fair to not give him a setting. So he was a great inspiration, just knowing that there was nowhere else and we needed somewhere. And then it was a conversation with my aunt. She's not on the spectrum but she has very, she has different traits that are quite autistic, autistic-like behaviors. And she was born in '49, so there really were no services. Nor was it ever talked about in the sort of very British, "don't talk, that's too touchy-feely." And she's amazing, she's super functional and she's independent. But we were having lunch one day, and I was talking at a million miles an hour about the project and whatever, and I didn't really think she was listening, and this was two years ago. And she suddenly turned around and said "You know I'm not stupid." What? No. "I'm not stupid." And my Mom and I froze. She said "If only I'd had a school like yours, I would've made something of myself." And she got up and left.
OL: And you just fell over.
JK: We did. And we've never talked about it, never...I mean obviously special needs, neurological differences is part of my conversation everyday, mental health, neurodevelopmental issues. But it was just very powerful to me because it's all very well to be on the cute, five year old that you're teaching to speak. But when it's a 63 year old who's life HAS happened, and there's still this need to belong and there's still this need to be functional and to have a profession and an occupation and whatever. And to realize that she wasn't given that opportunity for me is heartbreaking. And it made me say, "right, well we're doing this." Because everyone deserves that. So yeah, it was two very personal moments.
And then it becomes addictive Oscar. I mean these kids are, they're mirror images of you. And everyday there's a slight fear, of course there's a fear. Because you don't really understand what's going on in their ... you don't know how they're going to react. And I get beat up. There's on kid, I mean he's really good at beating me up (laughs). And it get really ugly, and it gets really primal. And you've got a twelve year old who's completely stripped and your restraining him, and there's a whole training to contain and restrain in an appropriate way and in a respectful way and in a dignified way that's safe for them and for you. But when you're in a hold for an hour and he's screaming abuse you're like "Really? Is this really what I want to do?" But there are moments ... well have you seen my Facebook page, my profile picture?
OL: I think so, yeah.
JK: There's a picture of me, you can stalk me. But there's a picture of me, my profile picture where I'm holding on to this kid. And he's an 8-year-old, non-verbal. And he does what I think is in my experience what I think is the most heart-breaking which is self-aggression. Because he gets so frustrated ... or he just wants attention. He hits himself. And there are kids that do that. This 12 year old pulls out his eyelashes, which isn't that fun when you see him. And then he goes "Me duele el ojo tanto!" (My eye hurts so much!). Well if you're going to pull off your eyelashes ... But anyway, this other kid he just hits himself. And he was just going for it. And it's almost like a tic. It starts with him being upset or it starts off with him wanting attention and then his brain ...
OL: It's like a stim.
JK: Yeah. And he just gets stuck in there. There's no way to rectify it. He just can't break that pattern. And he was GOING full blown. And we have therapy dogs that come in and give therapy sessions with the kids. And he was there and he was just hitting and hitting and suddenly he turned round and he grabbed onto my face. Full eye contact, connected and I'm like "I know you're telling me something. I don't know what it is but I know you're speaking to me." And that's when they took the picture. And it's those moments that you become addicted to. Since then he has never connected with me. So it was a once in October moment. But it's almost like working in front of a mirror.
It's ... this population to me forces you to see your fears, your worries, all of the ... really taboo deeply-rooted in you issues of acceptance, tolerating and of patience, the ugly stuff. As well as the super innocent, pure, help me I'm trapped inside this brain. And I just find it really thrilling. It just makes you want to go back everyday and keep trying. For those moments. And it sounds so cursi (cliché), like Disney is about to...a dove is about to sing and the pillows are going to get up and dance and sing (laughs). But it's very very true. And what's also so incredible is that they LET you. They have none of these barriers that even young kids develop so quickly. And there isn't, there's just this complete innocence. And to get their trust you have to connect at a really basic level. So there's no "If you sit down, I'll give you a lollipop." Or at least not at my school. If only! That would be so much easier. And so it really just makes you try harder. The head of school ... actually there's a video on the internet about the institute. The one in Houston, but there's a bit about me.
OL: Is yours in Mexico called Monarch also?
JK: Yes. So there's Monarch School Houston, Colegio Monarch Guatemala, and Monarch Therapy School Mexico, Mexico City. It's a very long name. But she was the one that said it really just makes you ... She says "It's so easy to focus on one thing the kids can't do. But what happens in twenty years and thirty years and forty years when they are able to?" That's what we're aiming for. If they didn't manage to do it right now, well ok.
OL: So is the idea a final integration or is it to be able to interact with society at large?
JK: I think the vision, like the huge picture, is to blur the lines between them and us. That sort of concept of ... a special ed school versus a neurotypical school. It's more to accept. I mean, mental health is such a huge issue. Did you ever see that footage or those pictures of the tidal wave, the tsunami way back? There's a picture. Obviously someone's waving at the guy who's on the beach saying get out of the way. And the huge tidal wave is behind him. I mean I don't know if he survived and I'm very sorry for him. But I sometimes feel like we're like that. We're just kind of like "Yay!" with mental health and it's about to hit us. And the cost is going to be huge. And what Monarch Institute wants to do is remarkable. They have housing. They have five different homes where kids live in transitional services.
Monarch is a level system. There are four different levels. And it's basically depending on your level of functioning where you're placed. And chronological age is taken out because we know that a 17 year old could be in high-school but if he's functioning at pre-school level then why are we putting him in a high-school level? So we kind of take age out of it and just work out where are they developmentally. And the fourth level, which is the highest level, you've got kids who are able to go through...they have five different high-school diplomas or high-school programs. So they try to get kids up to their abilities to be certified in some way. And they try to accompany them to university or to community college or they do work placements. They have over forty internships where they place these kids. And the school has seven student-run businesses. So all of the admin stuff, the stationary, the kids run. So if you want a pencil, let's say you're a teacher and you want a pencil. Then you write out your request form. And a student reads it, researches what kind of pencils there are, how much it costs and they divided them into kids that have those aptitudes. So kids that are super good with maths are doing all the accounts, kids that are doing really good at maybe more occupational, like counting out pencils do that. So there's all of the admin and stationary, there's the uniforms, they have a travel agency, they have all these different things that were within the school setting and they have something like 11 acres, this huge, huge piece of land. And they're building a whole campus to be able to house the kids as they go through the level system. So what they want is to be able to create a community within a community. So instead of taking these kids out INTO communities and placing them, what they're doing is to create their own community.
So, for example they have partnerships with the Starbucks around the area. So the students are working within Starbucks. But the Starbucks people are also coming in and working with the students inside the campus. So they have a "grounds for grounds" thing. All of the coffee grounds are used for the garden and the planting. So they're trying to blur this division. I believe 100 percent in that, that's utopia.
Mexico is a different culture. I mean it's a very different culture. Where the United States in my opinion, in my interpretation after living there for a year within the institute and with the families, for the US culture it's almost as if "You have a problem then it's your community's job to share it out with you." I have kid with special needs so don't block the ramps, so provide a musical that is friendly for him, so government give me the therapeutic services, give me a school. There are insurances that cover my needs. That's the general philosophy.
Here in Mexico we're a family-based society. So the expression in Spanish is "La ropa sucia se lava en casa" (dirty laundry is washed at home). So if I have a kid with special needs, the family closes ranks, I will protect, I will deal, I will do whatever. I will have professionals come to MY house but I won't advocate for what they need. The most perfect example is this girl that came to us last week. There's this girl that came. And she has a neurological difference. Not autism but cognitive delays, very noticable motor delays, so she walks a bit wobbly, she has a tremor. Physically very obvious that there is a difference somewhere, neurologically. She was brought up in the school setting, in the Colegio Irlandes which is this very conservative, religious, very Mexican upper-class school. Fine. The parents struggled every single year until last year finally the school said, "That's it you can't come back." Fine. So she's sixteen. When I met her, which was two weeks ago, three weeks ago. We were talking about what Monarch is and if it's a school for special needs, neurological differences and all that. And I said to her - do you have any difficulties with something? "No." But the kids here they don't know how to read or write, and she doesn't know how to read or write. And she's like "No. Yep. I have no issues." So in complete almost denial.
OL: How does she get to sixteen through school without knowing how to read and write?
JK: Well this is the whole thing. But even worse is when we sat down with the parents to give feedback and say "Look the biggest issue is this girl is 16, so she's right in the middle of puberty. What does her social life look like?" And her parents said "Well, she'll get dressed up with the super high heels and the mini dress and all that. And then they won't let her into the parties because she's not invited. Or she'll throw a party at the house and nobody will go." And so there's this very obvious rejection of her by her peers. I mean she left the school in July last year so she's been out of school four months. But there's this very obvious rejection. And it's not that I judge or justify the peers. But they're going through their own adolescence and their own issues, and acceptance and rejection is part and parcel of adolescence. But the main thing with this girl is the subject of her difference hasn't been talked about. It's taboo.
So everytime she has a seizure they'll say to her "Tus piesitos van a empezar a bailar" (Your little feet are going to start dancing.) Instead of saying "You have epilepsy. You are having a seizure. This is what it looks like. This is how we fix it. This is the medication you take." And so I was really aware of this girl who's sort of stuck in limbo because nobody has ever told her how different she is. Nor have they told her to advocate for herself. Because at sixteen walking around in high-heels and a mini-skirt and being completely vulnerable because there's no way that she could stand up for herself mentally or physically to the level if somebody were going to be aggressive to her. And yet she's not at the other extreme of my kids who are low-functioning and just getting started on their road. And it's such an example of Mexico. If you don't talk about it then maybe it doesn't happen. And it does happen. Since January 2012 to right now December we've probably had about sixty to seventy families approach us asking for information.
OL: And did you choose the age for the twelve?
JK: It just sort of happened. I never thought we'd get such low functioning kids. I thought that we would have slightly higher functioning kids. Because usually at this level they’re all in clinics or therapy centers receiving one on one. So I was very surprised by that. And I think I've also been surprised by the lack of expectations. They've been super mega low. From parents, from the system. Report cards went out and it's like 'Well my kids don't know how to read and write so they failed.' And the educational board writing to me and saying "Yeah failing looks really awful. Can you give them a pass? Because 'el cinco se ve muy mal" (a five looks really bad). (Laughs). Ok if its that random then is an 8 ok? So everyone gets an eight. I mean it's completely random.
OL: Is there any kind of government support or funding for the school?
JK: For my school? No. Special education, I'm not entirely sure when it started but I'm almost sure it was in the nineties, as a department all to itself. But it's not recognized. So SEP (Secretaria de Educacion Publica/Secretary of Public Education) is the main body. And then it's divided inot preschool, primary school, secondary school, private schools, government run schools, adults. So it has all these different pockets. And there's one for special education. But the more I've been into it, the more I've lived with it, the more I've realized that there's no communication between them. And because they don't believe that the special education people are important, it's like they don't have a place, they don't have a voice. So the perfect example is my school has wheelchair access. And it has all these different structural things that are necessary like tinted windows so that the glare of the sun isn't affecting them. We have a big soundboard which is on one of the walls because we are right on the motorway to Toluca so there's this sound board which is this huge concrete wall so that sound bounces off and doesn't actually come in. Because otherwise the kids would be very sensitive. All of our classrooms have observation rooms so there's a two-way mirror so that professionals and parents can come in and observe and learn what we're doing and what the kids are doing without disturbing the classroom. So all of that makes sense in a special education setting. But to get certified we have to comply with what a neurotypical school would need. So they don't accept having any therapists, having tinted windows they don't accept observation rooms. So it was almost like we had to build a school and not tear it down but make all the modifications to become a normal school.
OL: So are you recognized by SEP?
JK: We are recognized by SEP. But we're recognized. So to be recognized you have to present yourself as a normal school, neurotypical school. And then you report to the special ed department. It's so wrong. Because ... because we're not. I mean I have eleven therapists. "No you need teachers." Well yeah but if I put a teacher in front of one of my kids who's hitting himself, they'll have no idea what to do. "No that doesn't matter." But once you get over being certified and you get into the special ed. they ask you "How many therapists do you have?" But you just told me a week ago I couldn't have any. "Well of course you need lots of therapists!" Another interesting thing -- there are no NONE special education high schools. Not one. You have preschool special needs, primary special needs and then you jump to 18 year olds that are doing like special job placements.
OL: So what happens between 12 and 18?
JK: It's a mystery (laughs). They disappear. And then they just reappear -- tada! I'm ok because I've had six years of no services. You?
OL: So is your idea to expand your school into high school?
JK: Most definitely. And what I would love to have, my vision is to have transitional living services because ... Actually what's really cool is there are two universities, IBERO and ANAHUAC that are starting programs for special needs kids. They're more like diplomas, but just the notion that they have these services is really cool and it shows great initiative.
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