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Autism Now: Jessie Mojica Extended Interview

April 21, 2011 at 12:00 AM EST

TRANSCRIPT

ROBERT MACNEIL: What are the chief issues confronting you and Bronx Borough President in education right now? Why is that capital expended, and where is that capital expenditure needed?

JESSE MOJICA: I think the chief in the borough of the Bronx is resources, and our capital expenditures mostly are to make sure that our schools are equipped with the adequate resources to be able to teach our kids. Many of our schools are lacking in technology. Simple things that most schools should have, that are a given in other districts, many of Bronx schools struggle with, like up to date computers, libraries that are up to date and modern, science labs, media labs.

Some of our schools lack proper playgrounds. Things that people would say, “This should be a given,” aren’t a given. Health clinics are things that we’ve funded in the past. And with respect to the Bronx and our children — health disparities — both physical, emotional, and developmental — are huge issues in the borough. So, when our borough president came in, he saw all of that and he said, “Well, if I’m gonna get an capital dollars, I’m gonna look at, you know, education, and look at making sure that our schools are well equipped.”

ROBERT MACNEIL:  Does the funding you’re talking about involve any of the District 75?

JESSE MOJICA:  Yes. In fact I give the borough president a lot of credit  in the area of education, and in particular, the area of District 75, because he’s really madea point to try to find out what the needs are in District 75. He actually spoke with, met with the superintendent of District 75, and sat with him, and talked to him, and said, “What are your needs? How can I help you?” 

And the issue with District 75 is, and this is more of a bureaucratic thing, that needs to be resolved citywide, is that, a lot of the technology that could be available to children with special needs,  sometimes we’re not able to fund it, because it’s not eligible. There are things on a particular list that  the city authorizes. You can use capital money for this, and this, and this.

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And some of the new things that are coming out, like, iPads and readers, and other things that might be helpful to children with autism are a bit more difficult to be able to fund through borough president capital dollars. And I know that’s an issue that the borough president had raised, and continues to raise.

So, we’re really trying to make a concerted effort to work with District 75. This is not a Department of Education issue, this is more of a city issue. And I think that these laws need to be rewritten, or these provisions need to be rewritten, so that, as technology improves, we can as an elected body, be able to put capital dollars, you know, towards these issues so that we can help children.

ROBERT MACNEIL: When we were at PS 176 they’re very keen on the iPad as a tool for kids with autism.

JESSE MOJICA:  Yes.

ROBERT MACNEIL: They have 23 of them. It’s just that  they have 700 students, and they’re wondering how they can scrounge, find ways of financing more iPads– and with a lot of difficulty. So, that’s an example of what you’re talking about?

JESSE MOJICA:  Absolutely, absolutely. I mean that’s one of the most frustrating things, is that there are so many questions with regards to autism, so many things we do not know. But there are certain things that we do know, and technology plays a very important part, in particular, with children with limited ability to express themselves.

So, to have a school as large as, 176, with a tremendous need there, and to have only  23 of these iPads for that student body? That’s something we can remedy. That’s something that should be solvable. We don’t have any — we — there are certain things we have no idea about, with respect to autism. But something like iPads, and being able to provide them to a school, should be something that should be a given. And  I think that we need to do a lot more work in that area in the public school system.

ROBERT MACNEIL: Whereas, the charter school where we’ve also been, with right now only 30 students, has all the iPads and iTouch, and so on that they want.

JESSE MOJICA: Yeah, it is a very, very  frustrating, and in many senses, uneven playing field. Where there are some schools, through no fault of their own, you know, where they have more, and then there are other schools that have less. And I think that, a lot of times when you talk about the conversation between charter and public, there is a lot of emotion to it. Because parents, you know, are upset.

You can reside in the same building, two schools in the same building, and have two totally different realities, and why should that be? I think every school should be, you know, on the same playing field. And why should one school have access to more, and the other, you know, not– not as much? So, I think that that’s a very good example, and it’s something that I wish that, you know, playing field would be level.

ROBERT MACNEIL: How representative is PS 176, of public school’s efforts to treat students with autism, generally speaking, not just in the city, but around the country? How does 176, stack up in the experience of the average public school kid with autism?

JESSE MOJICA:  I would say 176 is, I believe the largest public school for individuals with autism in the state. It’s an excellent school, and I think that the experience is there because they deal with very, very young children, up to children who are, I believe, up to the age of 21.

So, their experience is the common experience, I would say, in the public school system. They have a very good reputation, and a lot of parents– they have a long waiting list. So on one end, they do mirror, you know, other schools within the public school system, in the sense of what the challenges are, and what the best practices are. But on another end, they are exceeding other schools, because so many parents want to go there, because they’ve had negative experience somewhere else. And they hear about 176, and they say, “Well, at 176, I’d have a better chance.”

ROBERT MACNEIL:  One parent of student at 176, said ironically, we thought, she thought she’d won the lottery when her kid got in there.

JESSE MOJICA:  Sure. That’s the feeling. That is definitely the feeling. I mean, 176– Principal Ritholtz, does an excellent job of not only helping the children there and leading the staff, but she creates a very familial environment.

And people sense that, and there are people who go through experience where they’ve gone to schools where they haven’t felt that, or their– their children are lost in the system. And Rima (Ritholtz) knows every child in the school, she knows their parents, she’s accessible, she’s reachable. And I think that’s important. Because a lot of times we focus on the clinic aspect of autism. But then there is the emotional aspect on autism.

There are many parents are going through this, and it’s their first experience. They’re new in the process, and I remember how vulnerable my wife and I were in the very beginning. And you need that type of atmosphere, or that type of personality that says, “It’s gonna be okay. I have the answers for you, and I’m here to help you.”

ROBERT MACNEIL: Tell us your story  regarding the charter school.

JESSE MOJICA: The charter school –  my story was, as a parent, a few years back — I want to say, I think it was about — six, seven years ago, around that time. Time flies.  And I was looking for … Adam was a very different boy than he is today.

He was exhibiting self-injurious behavior — he was — he is non-verbal, but he was really drifting inward. And we felt that he needed something a bit more stringent, you know? Stringent’s the wrong word, but he needed a lot more attention. And I heard about the charter school, and I heard about…

ROBERT MACNEIL:  Which was just being started then..

JESSE MOJICA: Yes, so I heard about — I know of Ilene Lainer and Laura Slack. I knew that they were starting this new school, and I read about it, and I said, “Wow, that’s fascinating.” One on one, you know, teaching, and I said, “That’s what Adam  needs.” So, I went to an informational session, and we put our hat in the lottery, we put our name in the lottery.

And we found out that Adam just barely missed it. And — it was devastated to us, it was devastating. Because as I said to you before, with respect to the technology, here was something that I felt would help my son, that I felt powerless to help him. He was hurting himself, he was drifting into himself, he was losing — we were losing him — even more so.

And here, I thought, was a solution, and we couldn’t get in, and I was heartbroken. And I remember, we went to the informational session, because we were very high on the waiting list. So, there was a slight possibility that we could get in. And as I’m sitting there with the other parents that were — they’re talking about the school, and I whispered to my wife, I said, “There is nobody who is dropping out of this school.” I said, “We’re not gonna get in.” And I just wanted to prepare her. She had a little bit of hope, and I’m more of — I like to prepare for the difficult things, instead of being, you know, deeply disappointed. 

But then I spoke to Ilene, I was very impressed with her. I wished the school well, because on one end, I was devastated, but on the other end, I was ecstatic. I was ecstatic that this opportunity was gonna happen for families, and– and that made me happy. And I said, “Fine, Adam didn’t get in,” and I was sad, but I was happy for the parents who were in.

And I spoke to Ilene for a bit, and I think a few weeks after that, she gave me a call, and said, “Would you be interested in joining the board?” And I said, “Wow, that’s kind of the irony,” you know, in the sense of like, I wanted my son to get in, but  I was asked to be on the board. But I didn’t hesitate. I said, “Absolutely.” Because I want to help people — with loved ones with autism, and it was an honor to be asked, and I was honored to be part of the board.

ROBERT MACNEIL: Somebody looking at this from the outside might say, “You’re a senior official in education, in the city government here in New York, and you can’t wangle your way into that charter school?” It says something about the — the cleanness of the lottery system.

JESSE MOJICA:  Yeah, it does, because, I think a lot of people thought, you know, at that point with, you know — whatever connections I had, that I can, you know, get in and absolutely not. I mean, it’s a fair–

ROBERT MACNEIL: You could shoehorn your way in politically?

JESSE MOJICA: Yeah, and it’s interesting, because I like the fact that the system is fair like that. You know, it should be fair like that. In fact, Laura and Ilene, who started this school, neither of their children are in the school.

So there’s a fair system, the only thing is, as a parent, you are heartbroken. And I was heartbroken,  but it is the way it should be. I mean, it is by lottery and there is no preference to anybody, no matter where you are from, or who you know, and that’s fair. Because the average parent, without any connection to anything, should not be deprived of something because somebody else has a position of power or connection.

ROBERT MACNEIL:  The charter school has 30 kids. It’s going up to 32. There are 6,000 to 7,000 children with autism in New York City. How effective can the charter school be with its high student/teacher ratio, one on one, as you say, when it’s such a small example in such a huge field of need?

JESSE MOJICA: It’s a good question, but for those 30 kids, it’ll change them completely. And I think that, there are best practices within the school that maybe can’t be duplicated exactly within the public school system, but can be of assistance, can be of, okay, that other educators can go in there and look at what’s happening there.

I wish that every single student within the New York City Public School System can have a model like that. It’s just not possible. The resources aren’t there. But I think for children for those children who are able to get in, if we can create more like this, I mean, it’s gonna dramatically change their lives,  and those educators who work within the school, who will then move on in their career to either the public school system, or other school systems throughout the nation, are forever changed  by working within the school.

So, I think that, yes, there is a limit, in the sense of, you would then have to create literally a system where you have 7,000 teachers– one individual teacher for every student. But at the same time, you are creating something that is helping those children, and you are training a group of educators that will go out and will become the heads of school systems, or heads of schools within the system and educate others.

So, I really believe that this school is definitely on the cutting edge of what we need to do in the future, and I was deeply, deeply honored to– to be a part of that board, and I really am very impressed with the level of education that goes on there.

ROBERT MACNEIL: Where does Adam go to school now?

JESSE MOJICA:  He goes to school in Manhattan. It’s called AMAAC, it’s the Association for Metro Area Autistic Children, and we’re very blessed that he’s there. He started there in 2007, and his self-injurious behavior has dramatically decreased, and he got the twinkle back in his eye, and he started to smile more, and his socialization skills really improved, and he’s just such a happy guy.

He needed that behavioral approach. They worked a lot with Adam on his behavior — and were trying to (increase) communication skills.  Adam is still non-verbal — and he’s beginning to learn on a technology device. We actually did that this year. So, we’re in the process of getting an evaluation done for him to get a technology device, so he can communicate. He turned 12 today, so God bless him, he’s come along way. He’s a beautiful boy.

ROBERT MACNEIL:  Is that school — it’s a private school, but you were reimbursed from public funds?

JESSE MOJICA: Yeah, it’s called a state-approved non-public school. So, it is in a sense private — it is a private school, but it has a connection to the Department of Education, where it’s on a particular list  of schools that, if there isn’t an appropriate placement within the school system, this is a school that could be an option for parents.

ROBERT MACNEIL:  Yeah. So, what has Adam done to your life?

JESSE MOJICA: It’s completely transformed it. You know, I am a very different person than I was before Adam was in my life. I was very career oriented, and I wanted to be in control of everything. And I thought I was a loving guy. I wasn’t a bad guy. If you would’ve met me 12 years ago, you wouldn’t say I was a bad guy.

But I wasn’t a guy that really knew what love was. And I love my wife, and that’s when it started. (LAUGHTER) And then, when Adam was born, I remember holding him, and just, the only word I could muster out of my mouth was, “Ooh.” Like I didn’t want anything to hurt him. I was just like, so amazed by him.

And when he was diagnosed with autism, it was a very difficult time. Where, you realize that your– this is a moment where your life is changing dramatically, and you can either be broken by that, or it can take you in another direction. And where Adam took me was, he made me into a better man. You know, he made me to think about others, and to be compassionate, and to live for the moment, and to treasure those things that some think are ordinary, but I think is extraordinary.

Like, Adam looks at the sky and smiles, and he’s looking at things that I’m like, wow, that is beautiful. The sky is beautiful. Or, Adam will come in and give me a hug, and– and that’s so precious to me. Or he’ll lean on me, and kiss my cheek, or he’ll jump up and down because he hears some noise that’s making him happy.

I mean, all of these things that are simple things in life, you know, have really I treasure them, because for Adam, I know how far he’s gone. And if he wasn’t in my life, I wouldn’t know what life is. I think that’s what he’s done for me. He’s really taught me that, the true meaning of life is to love, and to give of yourself, and to be compassionate to serve others. And I’ve met a lot of very impressive people in my life, but no one’s taught me that more than my son, and I will be forever grateful to him.

ROBERT MACNEIL: What has Adam’s presence meant for your marriage?

JESSE MOJICA: It’s made it stronger. It’s interesting, because we’ve met a lot of people where it’s gone the other way, and I understand it. I don’t judge it. I have met friends, I’ve had friends of mine, whose marriages have broken up because of the strains of raising a child  with a disability.

We became stronger together. I can’t make a formula to it. It’s just to us, we knew that when Adam was diagnosed with autism, that we were gonna go through this together. And we knew that we loved each other and our love would get us through this.

And my wife has always been, and will always be,  ten steps ahead of me. Like, she always was from the very beginning, “We are going to help him. We’re gonna get involved in education. We’re gonna get involved in advocacy, and we’re gonna help him, and he is our son.”

And we’re never, ever going to think about it as, the son we should’ve had. We’re going to think about it as, the son we have. This beautiful blessing, and — and he is all of that. And Anna and I, like I always say, like, the first time I met Anna — I was very struck with how beautiful her eyes were; we met in a theater, and I was very struck how beautiful her eyes were. And I’ve seen those eyes look at Adam in a loving way, and through the years work to help him, and work  to get him what he needs to get. And they’ve just become more and more beautiful to me over the years. I mean, I am a very, very deeply blessed man. To have the woman that I have with me, and — and it’s — you know, Adam has done nothing but make our life glorious. I mean, he and and my youngest son, Miguel, have made our life glorious.

ROBERT MACNEIL: Miguel is neuro-typical, as they say?

JESSE MOJICA: Yes, he is eight years old. He had a birthday a couple of weeks ago. We were all born in February. And he  is Adam’s greatest teacher, by far. Where– Miguel had the attitude of, like, well– I think as parents sometimes, we want to protect Adam. We want to protect him from everything, and Miguel’s attitude was, “You’re gonna play with me whether you like it or not.”

Like, Miguel followed him around and really, like, we saw Adam’s social skills emerge when Miguel was born. And Miguel sees no limits with Adam, whereas parents sometimes, we want to protect him. And Miguel’s feeling is like, “You’re gonna try everything with me.”

And it is difficult for Miguel, because we have to strike the healthy balance of making sure that Miguel has as much of our attention as Adam does. And as Miguel is getting older, he realizes that his brother is different, and he is his brother’s biggest advocate, you know.

He, a lot of times when we’ll go to the playground, people will ask Miguel, “Why doesn’t your brother talk?” And Miguel says, “He has autism, but he can have fun. So, don’t worry about it. You know, he can have fun.” So, Miguel is Adam’s greatest teacher. But Miguel is such a beautiful boy, and– and I mean, he’s just such a gift to me. And he picks me up sometimes when I feel down. You know, when I feel like, there was one time, I’ll give you an example, where Adam was having sensory issues with his feet. And I could not for the life of me get a shoe on him. He would not put on shoes.

And I remember, I was trying with him for almost a half an hour, and he would not put them on. So, I just took a breather, and I just said, “I guess I can’t do this.” And I remember, Miguel was about maybe five, and he said, “Don’t worry dad, I can do it.” And he got on his hands and knees, and was saying, “Don’t worry Adam, I can do this you can do this.” And he did it with such a smile, and I look at this five year old boy with this, you know, beautiful attitude, and I say, “God, what a group of guys I got.” I mean,  I’m really a lucky guy.

ROBERT MACNEIL:  My grandson, who is six, always wants to take his shoes off, and– he would like me to take my shoes off, too.

JESSE MOJICA: Yeah, Adam likes his slippers. Like, if I’m wearing slippers, he takes my slippers off me. He’ll start putting them on me and stuff.

ROBERT MACNEIL:  Now you really give, and as I said in my e-mail yesterday, it’s such an inspiring story.  I had talked to another couple and — the day before yesterday, and she said,  90 percent of marriages where there’s — the child with autism  end in divorce. And I heard that yesterday again from the mother of Temple Grandin. You know who that is?

JESSE MOJICA:  Yes, yes.

ROBERT MACNEIL:   They’re setting — an organization to give more support to families. We — keep running into people like you, who say, it either strengthens your marriage, or it destroys it, but that it’s kind of 50/50. Now, we’re hearing this, 90 percent figure, which is — I don’t know whether you have any — but just from your own personal context and friends?

JESSE MOJICA:  It is very scary, where in the marriages that we’ve seen and the people that we’ve known — we would’ve never thought it. And it scares us sometimes, ’cause we say, “Oh my God, if their  marriage broke, could ours break, too?” And I think that, you just kind of have to live with this certain sense of abandon.

That, you don’t think about it. That, all I know is that, the people that I’ve talked to often judge themselves very harshly. And I say to them this — “Listen, I can understand. There is no right or wrong in it. It just sometimes happens and there is no blame to be…” I think that parents of individuals with autism blame themselves for everything sometimes. And that should never happen. There is no blame in this. This is something that happens, and you react to it a certain way. And it’s just  understandable. I think that, for us, we’ve just kind of — I don’t know what it is, but Anna and I have struggled, and it’s been a tough, tough road at times, but we struggled together. Like,  we have joys together, we have challenges together, and that’s something that I treasure. I treasure my marriage with all of my heart.

ROBERT MACNEIL:  What does autism subtract from a marriage, do you think? What does it take out of a marriage?

JESSE MOJICA: Time together. Where it’s always that either– one of us is– dealing with the therapy, and the decisions, or both of us are dealing with that, and there’s very little time to kind of — kind of say, “Hey, how are you doing?” You know, “How– how’s everything with you?” It’s always about the therapy, and the appointments, or I shouldn’t say, always.

But it takes a lot of — you have to make some very difficult decisions, and nothing is simple. Where something as simple as– I’ll go out with my son to this place– you have to think about it. Okay, can he tolerate that, or is this good, or is that good? So, I think that that’s the thing where, Anna and I have always made it a point to ask each other how we’re doing.

Like ask each other, “How was your day?” And also, humor is a very big thing. Like — we deal with such heavy things, that — our — our tastes in — in music, and in TV shows is very juvenile.

You know, we– we do that on purpose, because you need to laugh. You need to– and Anna has a great sense of humor, and I have a great sense of humor. So, you need to laugh, and need to kind of not think, unplug, and not think about weighty things for a bit.