The Velazquez Family Jill: The other woman who was, started answering, asking me questions, said something along the lines of ‘Everything that my diagnostic tools are telling me is pointing to an autism diagnosis. How do you feel about that?’ Sal: I cried. I wouldn’t say relief. I don’t know what it was, but it was almost like something came out. It was an answer. That’s what it was, it was an answer. Jill: I really couldn’t imagine that my second child would have the diagnosis. I thought, ‘O.K., who in their right minds gets two children diagnosed?’ Sal: There is this sense of, it’s not what you want to hear. Who wants to hear it? But it’s tangible. My name is Sal Velazquez. I’m the father of Nicholas Velazquez and Elena Marie Velazquez. Jill: O.K., I’m Jill Velazquez, and I am the mother of Nicholas Heath Velazquez, you forgot his middle name, and Elena Marie Velazquez. Sal: It’s a college love story. I really liked her the first time I saw her. Pretty damn cute. So I was thinking it was pretty instant for me. I remember everything in terms of our kiss, our first kiss and all that, where it was at, and when we go to the campus, I know exactly where it is. Jill: It was so natural, it felt so natural and easy to be in his company, and just from our conversations, I, it became very clear to me that we had a lot of values in common. We just had this kind of perpetual honeymoon, and so it was really just worrying about the two of us. Sal: Exactly, it was just us. You have to drop everything that you preconceived. We had a book here, if you like. Marriage, happy couple, nice home, great, typical kids. We were trying to live by that book, and the book wasn’t going to serve you anymore. This new book here, a big empty book is our book, and we have to write it every day. Sal, with camera on Elena: She was more, a little more obvious because she was not talking. She didn’t have a need for words. She didn’t want to use words, so that made it a little more clear that there was probably something going on with her as well. Sal: It’s about time. We got to get Nicholas. Sal: Nicholas came in 2006. His grandparents, Jill’s mom noticed his intensity, and I just called him an intense baby. Sal: What are the rules about the furniture? Thank you. Go get new clothes. Sal: He was an intense baby, but he also had incredible focus in terms for, of looking at things in the room, keeping his attention on a detail. Nicholas: Help me, Mom. Sal: Something would catch his eye and he would just, he would fixate on it. Nicholas: I want pizza. Jill: Hello, mother, how are you? I love you. Please. May I have pizza please? Nicholas: My pizza. Jill: Nicholas. Sal: She got a lot. I mean, she works at a private school that demands much of her time. She is really good at it, and she is very detail-oriented. I think she goes an extra mile or two, which she doesn’t have to but she does anyway. Jill: Which letter is that? S-S-S, like a snake. Which letter? Nicholas: Sand castle. Jill: O.K., so let’s write sand. Sal: Adjunct college instructor in the fine arts. I teach classes in theatre and film. I have time in acting classes, screenwriting, I’ve directed plays, give an intensive summer-long massage therapy training, and it’s supposed to help supplement our income. Visual: 4:30 Pm Nicholas: It’s clean. Jill: I tend to get home around 4 Pm. I try to shoot for that, and some days 4 Pm means I have been out of class for four hours and feel like I’ve accomplished something, and there are some days where I open the door and it’s clear that there’s a problem. And sometimes he’ll just, speaking of texting, he’ll just send me a text like, ‘The house is a mess.’ I’m, I’ve usually got a lot of energy at that time in the day and so I try to put it toward, I just look at it the minute I get through the door we’re working toward getting the children to bed, and that’s not because I don’t want to see them. I do, but I just think, ‘O.K., we still have laundry to do,’ you know. If I see that the kitchen is dirty, sometimes he’ll say it, you know, ‘I’ll clean up; you deal with them,’ you know. There’s no time where the other parent just kind of can sit back and say, ‘Well, I have been busy all day. You handle it.’ Subtitle, Jill: Well when he drops something . . .when he can not find his toy. He has all his toys everywhere, then he comes to complain that he cannot find it. Nicholas: Help me. Help me. Help. Sal: I’ll help you. Can I help you? Nicholas: Help. I don’t want to do it. Sal: Let me do it. Nicholas: No. Jill: You know, there are times that we think that something will be great for them, and then we quickly realize, ‘Abort mission,’ you know, and so we spend a lot of time just reassessing and turning, you know, doing a 180 on what we thought we were going to do. ’Cause you can’t be dictatorial with the children, and it’s, you know, we’ve learned better ways of how to get them to do what we want them to do. And especially with Nicholas, any time it becomes a staredown or a you’re-going-to-do-this-because-I-said-you’re-going-to-do-it, it’s an absolute disaster. Elena: Oh, oh, oh. Oh, oh, oh. Nicholas: Oh, oh, oh. Oh, oh. Subtitle, Jill: Nicholas. It’s Ok. You don’t have to cry. That was close to being one of his episodes. Jill: We’ve become very creative in ways of, what do they call, non-desirable tasks, you know. That’s like either the education terminology or the therapy is like how are they on non-preferred tasks? Subtitle, Jill: Nicholas. It’s all fixed. Jill: When we started doing it, yeah. Subtitle, Jill: She takes a bath every night. Jill: Bath time and bed time, any kind of, any kind of routine or ritual, you know, the experts, which I agree with, say children tend to react better to something that is familiar in a routine that’s predictable. And of course, especially children with autism, that’s a recommendation and yet they both love their baths so much that the bath would just go on and on and on and on. The bath comes right before bed, so we’re tired, they’re tired, but, so I think it was just kind of, any of the, any of the toys that we have in the tub were songs. Especially Elena would let me sing to her in the tub and so, and so we always, I always say, ‘I’ll wash up, I’ll wash up.’ Subtitle, Jill: Water, shampoo . . . water Shampoo – water Jill: Because she would just come unglued when I put the water on her head, and so if I would say it or say it in a funny or teasing way, then she would start to, then she would start to anticipate it. And then the next thing she knew, she didn’t even realize she had had her hair washed, you know. Sal: Hey, you. Jill: Just those kinds of things like that Sal did to make it, to make some of the things that they don’t want to do a little easier. Sal: Jill did a really good job of establishing a nighttime routine. It gets broken, you fall back on at least it’s there and that’s something that’s familiar. Subtitle, Jill: We are going to read this book one more time And then we will turn off the stars. Sal: And it’s a way of being that’s comfortable for them, and it’s ritualistic, but it’s important and it has worked. Jill: I love you. Subtitle, Jill: Very good! Sal: And, um, I recommend that you establish a bedtime routine. Subtitle, Jill: Thank you. Now to the bathroom . . . and then daddy will come. Nicholas give Elena a little kiss Tell daddy “I’m ready” Good Night Sal: Buenas noches. Good night. Elena: Night. Jill: His absolute unwillingness to stay in the bed, he’d start in the bed and then he would just like at two or three in the morning, uh, just have a complete meltdown about being asked to stay in the bed, and there is a hole in the back of the door that he kicked in in a tantrum in the middle of the night. And so finally, even though after all these years I had said, ‘I will never have my child sleep in my bed with me’ was that he had to go to sleep in his bed, and so he starts the night in his bed, and he always comes in at like two or three and gets in bed with us. And I just thought, ‘Well, something’s better than nothing. At least now everybody’s getting sleep.’ Subtitle, Jill: And we had to create this routine because we only have two bedrooms Jill: He’d been very hard to take in from any kind of a transition, any kind of transition was very hard on him. One evening, and I can’t even remember what the incident was even though we were trying to calm him down and actually we were very calm, but he was just, you know, like for an hour or so . . . I was in the kitchen, I think Sal was in the bedroom trying to calm him down, and all that he was doing was just, he had him on the floor . . . Sal: I know what it’s called, it’s called ‘deep pressure. It’s a technique just to soothe people. Jill: I was just in the kitchen and I just said something offhanded like, ‘Oh, look at, the police are here.’ And then I suddenly realized they were here for us. And that was not a good moment, and then it was one car, two cars came and I said, I was getting Nicholas to come in and look at the police cars. They knocked at the door and they said they were responding to a call. Somebody had been, you know, walking by or maybe there was something going on next door, and he had been concerned about a child’s welfare, so we invited them in. They walked into the bedroom. He stopped immediately because he was so fascinated that there were policemen in his room. And that was the end of the tantrum. Visual: 5:30 Sal: For some reason, Nicholas always gets up very early, always. He can fall asleep at midnight and get up at six still. There’s no sleeping in for him, and I think that’s just part of his energy. That’s his behavior. He’s hard to be around when he doesn’t sleep. Subtitle, Jill: Are you listening to a pigeon? Is a hummingbird, which are the smallest Sal: And it happens at eight, we’re here early today. Jill: How’s his behavior on the bus? Bus Driver: This is Nicholas. Jill: Is he? O.K., tell me the truth. Bye. Sal: So I think about four o’clock today he will be in an awful mood. He’ll seem really hard. Usually it’s a signal for another of his meltdowns. There’s a pattern there. Subtitle, Jill: Now we can breathe a little. He’s with the driver now We can prepare the rest of the day. Visual: 7:45 am Jill: I live, you know, next door to my employer and so, um, this, you know, sometimes I, if I can get there with thirty minutes or forty minutes ahead of time, that’s wonderful, before my first class, but that’s one more than the one I have, which is laughable, so walking across the parking lot is helpful. Sal: Elena tends to sleep, which is nice. Usually she’ll sleep in until after Jill leaves. She’s a different person than Nicholas. She’s, she’s, well you saw, she’s a girl. She’ll come running out. And certain other, certain songs make her happier than others, that particular piece of music, using it as a tactic to get her dressed. Elena: Spaced out. Spaced out. Spaced out. Sal: She’s just as smart as he is. She’s just as interesting as he is only she doesn’t talk. You know, that’s my daughter. That’s my kid, you know. Um, it’s like she’s going to be a woman someday. Jill: The nature of my job as a teacher is just there’s, there’s always something to do. Classes don’t happen just out of nothing. As a teacher I mean, I’m on, I feel like I’m on stage, you know, for five hours of the day on the days when I have all my classes. And really, I’m pretty, I’m pretty good and it’s gotten better. Once I’m at work I’m focused on my job. Sal: Hey, man, I’m still a teacher sometimes, you know. I do a lot of my work in advance, um, before my semester begins or catch up in my field or even once in a while work on something creative. And massage is about sensory input. To me it’s more about making you feel better. That was my training. What this has become is become something bigger than what I was trained to do. And I think, you know, that happened because of the kids, you know. They just made me more aware of, about the potential of that therapy to bring people to a healthier state of being. And, you know, it makes me happy to do it. I’m happy to do it. I wish I did it every day. Jill: I think I just, I come at it with a much more patient approach. It really opened my eyes to also thinking, um, of teaching in different ways. I, I understand where they’re coming from, and I’ve seen it with my own children, that certain ways of learning definitely they respond to more positively. So I think I’ve become more patient and understanding. Sal: I don’t know if it’s been a blessing or not that we haven’t had me working, but better I guess for them, good for them to have me here, um, so there is the positive flip side of not having enough income. They’ve had Dad. I don’t have any problem with the notion of being the parent at home, but I can’t be too concerned about what the other people on the planet think. I’m the parent to my two autistic children. It’s what needs to happen. It’s you know, unknown territory, and so you’re responding from a place that you never, you have no experience to pull from. Visual: 3:30 Pm Sal: So what autism does to the couple is it really sort of pushes you as an individual, pushes you to your worst extremes at times. Sal: Take off your jacket. Sal: And sometimes as a couple you don’t experience those extremes with each other ‘cause you never had to. I doesn’t come up, at least for Jill and I. Visual: 3:43 Pm Nicholas: Where’s the rocket? I want it. Sal: I’m looking for it, O.K. I don’t know where it’s at, so. It’s O.K., O.K. I know you want it. Is it on your bed? Nicholas: No (screaming and crying). Elena: (crying) Sal: See if it’s on your bed. Instead of looking for it, you cried. O.K., you need to stop crying. Nicholas: No. Elena: (crying) Sal: You need to get out of the room. Nicholas: No. Sal: Then we’ll just put this back over here. Nicholas: No. Sal: You have the rocket. Take it. Nicholas: No. Elena: Bye. Goodbye. Sal: You’re fine. Sal: And that’s a tremendous amount of stress for us to go through. You know, and of the two of us, we’re different enough that we process the world differently, so we have to learn how we each, how we each process what’s going on, you know, and her response is different than my response. And so we have to be respectful of that. Jill: O.K., Nicholas. Nicholas: (crying) Sal: And so that’s not a way to live, so we’ve got to figure out a way to not live that way, you know. And once you start to understand, O.K., that he cannot stop, it changes you. At first when this happened, that was almost every day. And now it’s three or four times a day with these two-hour tantrums. Sal: All we can do is protect her, protect ourselves, and try not to get caught up, and try not to get angry. And that is, was, in the past we would get angry, then we tried to match him, and sometimes we still do. I can’t say we don’t. Visual: 5:30 Pm Nicholas: Let me go (screaming and crying). Jill: There’s a big part of me, what I said about having previously been a black and white person, I guess I would also say that any kind of what risk-taking of mine has, and I guess I’m very cautious by nature, but there’s so much of parenting an autistic child that makes you throw the rules out the window. I guess I have a much, there’s much less trepidation, there’s much less fear on my part to try something. I’m much more willing now to say, ‘Fine, you know what, let’s pay the three hundred dollars to take soccer for six weeks. And if we know within three practices that it’s blown up in our face, we’ll stop. And I didn’t used to be that way. I used to be, ‘Oh, it was the three hundred dollars, it’s the people that we . . .’ All of those voices have been silenced. It’s like, ‘O.K., you know what, we might eat three hundred dollars but we’ll never know if we don’t try.’ Jill: Nicholas, O.K., Nicholas, honey, these are envelopes. March 18th, 2012. Jill: Generally, it was just us. We’ve never had, we’ve never had anybody but family that were present at the party. We’ve never done anything except at home. Visual: * Need a birthday cake for 70 * Need a pinata (or two?) Angel Oswaldo Chase Jack *Need party favors for 21 children *Need lunch/drinks for “70” people Jill: We were afraid. It was a control thing. It was out of fear of being in a public place and having him, you know, throw a tantrum and there we would be in what was supposed to be a fun occasion and suddenly a scene. Once we had a diagnosis from the Westside Regional Center, you know. I thought it was already to change their behavior, and then she kind of laughed. She said, ‘No, we’re changing the parental behavior,’ and then was saying, ‘because you have to be the ones to change in order for the children to change,’ which makes perfect sense. Visual: Hal E. Goss, Grandfather Grandfather: Oh, we see them two or three times a year for a week to ten days each time to see progress. They feel positive about many things. They don’t look at this as a death sentence. They see the possibility of progress, and they don’t know where it’s going to end. Who does with any child, any challenge? Visual: Rudy Velazquez, Uncle Uncle: How are you guys? O.K.? Kind of really tired? We’re O.K. Visual: Dolores Doorbar, Aunt Aunt: It’s been awhile. It’s been, I can’t remember the last time. Two years ago? Aunt: Is that Elena? She’s so tall! So good to see you! Thank you. How are you, little one? Say hi to your Auntie Dolores. Can you say hi to Auntie Lani? Elena was very surprising, Elena. The last time I saw her she wouldn’t come with me. Visual: Lani Patin, Aunt Aunt: There’s been a lot of changes. Elena, she was not very social. But she had changed and I think ’cause she’s going to school now. So it did, you know, we did see a lot of changes in her. All Relatives and Friends: Not yet. O.K., Nicholas, get ready. Happy Birthday, Dear Nicholas, Happy Birthday to You. Sal: They have to know how to function in the world. They have to be part of the world. They have the life skills, like, God, to have to be able to go out into the world and to, you know, coexist. They’ll have to participate. Sal: So that by the time they’re twenty-two and twenty, they understand who they are and be guided to a place in their lives that they can function, knowing at some point we’re not going to be with them. They can go out in the world, to be O.K. with who they are and being successful in who they are, whatever success is for them.