Other People's Words

Transcript: Autism Women's Network interview with Jim Gott, former major league pitcher and father of two sons with autism

Posted in Uncategorized by Tera on December 23, 2009

This is a transcript of Sharon daVanport’s and Tricia Kenney’s interview with Jim Gott for the Autism Women’s Network radio show. Gott is a former major league pitcher who has two sons on the autistic spectrum.

Sharon daVanport: Good day, everyone, and welcome to the Autism Women’s Network Blogtalk radio show. Today is Friday, December 11. My name is Sharon daVanport, and I am your host. I’m joined today by my co-host, Tricia Kenney. How are you doing this morning, Tricia?

Tricia Kenney: I’m doing really good. How are you, Sharon?

Sharon daVanport: ‘m doing pretty good. I seem to be coughing just a little bit; I keep getting a frog in my throat, so if I have to pull away from the phone I’ll just let you take it over. It’s cold here in Nebraska. The snow missed you guys, though, didn’t it?

Tricia Kenney: Completely. I figured since you guys got hit, we’d get hit. But no.

Sharon daVanport: Well, we got 13 inches; we got just a little bit too much here.

Tricia Kenney: Yeah. My sister called from Wisconsin and said they were all snowed in, too.

Sharon daVanport: I heard that they closed school up there, and they haven’t ever closed school. My kids were out for three days this week, and they just went back today. They have never been out for more than one day at a time. It’s usually because of ice, not the snow.

Tricia Kenney: I wonder if it’s because it’s the first real snow of the season. Nobody’s prepared.

Sharon daVanport: I don’t know. It was really bad, though. I think because we got it in such a short period of time, the plows couldn’t keep up with the roads. It came so fast. Didn’t you have an announcement?

Tricia Kenney: Since we were on the air today, I just wanted to mention that James DeLorey, a seven-year-old in Canada who wandered away from home and got caught in the storm. They found him, but unfortunately, he didn’t survive the hypothermia. I just wanted to let his family know that our prayers are with them.

Sharon daVanport: That’s so sad.

Tricia Kenney: What a tragic situation that is, and it hits so close to home for many autism families.

Sharon daVanport: You can relate to that, can’t you, Tricia? I know that your little one, Austin, has gotten away and you even have alarms on your doors and everything. When he runs, he runs. It’s just the biggest fear of so many families with little ones who are on the spectrum.

Tricia Kenney: Exactly. And my kids are seven years old, too. It’s very, very easy to put myself in their shoes. It’s very heartbreaking, and I just feel so bad for that family. I just wanted to have everybody send a little prayer to that family.

Sharon daVanport: Right. That’s nice, Tricia. I’m excited about our guest today, Jim Gott. We’re gonna bring him on now. Even though we’re doing a show about autism and he’s got two sons on the spectrum, Jim is a major league baseball player; he’s a pitcher. I was telling Jim before the show that I grew up watching the Cincinnati Reds. We’ll bring Jim on and let him tell us a little bit about his baseball days before we get into the interview. Are you with us, Jim?

Jim Gott: I am. How are you guys doing?

Sharon daVanport: Pretty good.

Jim Gott: Thank you very much for having me on; I’m looking forward to this. We had sunshine yesterday and a little bit of rain today, and we’re freezing out here. Last night got to 35 degrees.

Sharon daVanport: Oh! You’re freezing. Wow, 35; I’ll take 35, Jim. [Laughter]

Jim Gott: It’s like 50 right now.

Sharon daVanport: That is cold for Southern California, isn’t it?

Jim Gott: It is. We’re definitely not used to this, but I can’t imagine 13 inches of snow. Boy!

Sharon daVanport: It was six below windchill yesterday. It got really cold here. It’s nothing but ice; I think the snow is gonna stay for a while. Jim, I was telling everybody that before you became an advocate for autism and put up your website, and getting involved with The Education Spectrum, you were a major league baseball player; you were a pitcher.

Jim Gott: I was, yeah. In 1977, I graduated from high school and I was signed by the St. Louis Cardinals. I played in the minor leagues for four years, and then I got my call to the big leagues. I started with the Toronto Blue Jays; I played up there for three years in the American League, and then I played 11 years in the National League with the San Francisco Giants, the Pittsburgh Pirates and the Dodgers.

Sharon daVanport: Wow. Those are some big names.

Tricia Kenney: Those were some really great years, too. I was really into the Brewers in the early ’80s, when they had their really great years. We’re talking about Paul Molitor and Robin Yount and all those really great guys.

Jim Gott: Sharon was talking about the Cincinnati Reds; every single year, the Dodgers would come into September and we’d have to beat the Big Red Machine, and we couldn’t do it. Then the Red guys started getting a little bit older, they started trading to different places. That’s when the Dodgers made their move.

My very first year in the big leagues with the Blue Jays, that was when the Brew Crew was there with Robin Yount and Paul Molitor. My very first big league game was against the Brewers. Cooper hit a double off me; Molitor hit a single—I gave up my first big league run before I even had a chance to breathe.


Sharon daVanport: I bet I watched you pitch in games and stuff and didn’t even know it when I was in high school in the late ’70s. We’re probably close to the same age. My dad used to take us to the Cincinnati Reds games back when Johnny Bench and all them played, too. I was just really into baseball for many, many years, and I still like to watch it on TV. This is really exciting. I want you to tell us a little bit about what you’re doing now, though. You have two sons on the spectrum?

Jim Gott: I do, yes. I have six children altogether. I’ve got a 24-year-old daughter that’s just getting ready to graduate from college this year; my very first son C.J. was born in 1988, and he is on the spectrum. He’s got a lower IQ; he’s a little bit more involved than my other son Danny. I’ve got twin boys that are 19 and not on the spectrum. My son Danny is 16; he’s not up in the Asperger’s range, but he’s in the higher-functioning range, going to a specialty boutique high school out here in Los Angeles: the Help Group.

They’re awesome; we’re so grateful that he’s there. It’s a very social-based environment for him. They’ve got specialists all over campus, so kids dealing with social issues in the hallway have a specialist there to be able to help them navigate through their social interactions with the other kids. In the classroom they’ve modified things and adapted them to the learning styles of each child. We’ve been able to see our son Danny just flourish there.

We were very excited. In the public school, where he was not on a diploma track; at the Help Group, he is on a diploma track. He’s on track to graduate in a year and a half. He’s a junior, and they got a chance to take a field trip to Pasadena City College to let the kids know it’s there, and to help them navigate. It’s a really cool thing, the way they’ve been able to set it up.

Tricia Kenney: Wow. With your older one, how did the diagnosis come about?

Jim Gott: That was a really scary time. I was playing with the Pittsburgh Pirates; my daughter Janice was born two years previous, and there she was doing everything on schedule and even a little bit ahead of schedule. She was talking, crawling, walking, standing up—all of the things that all of us are expecting to have our kids do at the first few months.

When C.J. was born, it just wasn’t that way. C.J. was really uncomfortable; he was colicky; he ended up having tubes put in his ears at a really early age. We just knew that there was something different with C.J. He just seemed to be agitated all the time. Then we saw that he wasn’t connecting with us. He wasn’t looking us in the eye; he wasn’t starting to babble; everything from his gait to his speech was very delayed.

We didn’t know what we were doing. I was in my mid-twenties and playing baseball and was gone most of the time. When I’d come back I would just see the frustration of his mom, and that ended up leading toward the end of our relationship; there were a lot of unknowns at that time. It was really a struggle for us, not knowing what was going on with C.J.

Sharon daVanport: I hear about that a lot.

Tricia Kenney: It is difficult, especially in your profession. I can imagine how she was just like: “I’m doing this alone and you don’t understand what’s going on.”

Jim Gott: Absolutely. I was really clueless. My first marriage ended. After a year I ended up meeting my wife Cathy. She was an administrator in a public facility out here in LA, always very into social causes. When we got married and I had four young children, I was on road trips, too, and the way Cathy’s brain works, she immediately got into fitting the pieces of the puzzle together.

With C.J. we went from everyone to the neurological pediatrician to the regular pediatrician to a developmental pediatrician. We got him in speech therapy; we got him in occupational therapy, all of these very important early intervention keys. Things were put into place at that time, and we really were able to see C.J. flourish between three and five years old. We got him to a stable level, and got a great team of people around him. There was a lot of comfort during that time, after the crisis of the first three years, C.J. being diagnosed, the break up of my marriage.

Tricia Kenney: That’s really tough on kids, too, especially when they have other things going on. It’s really difficult for them, to beginn with.

Sharon daVanport: It really is.

Jim Gott: It is; a really tough time. Now, being an advocate like you guys are, just being able to be out there and listen to some of the trials and tribulations that families go through, my heart just goes out to them. It’s a very difficult thing, because children are tough, anyway. I remember when my daughter was born, I still felt clueless. Every time she had a sniffle or cried or anything was going on, I just felt so inadequate with being able to comfort her.

Then all the sudden, having a child on the spectrum, it immediately throws you for a loop. Just doing a typical thing like going to the market—you can’t do it. Even on a good day, C.J. was struggling. He would throw himself down on the ground and hit his head on the concrete. He would bite his hand all the time.

As a baseball player, all I ever wanted to do was have another baseball player. My very first son was gonna be able to be the next Johnny Bench. That’s not the way it worked out. We would take him to the ball park, looking for that normal experience of him being out on the field and swinging at wiffle ball bat or learning how to catch and learning my uniform and running around on the field like the other players’ kids were.

I didn’t have that. Can you imagine the sensory experience for an autistic child at a ball game? That’s the worst place to take them; everything from the bright lights and thousands of people brushing up against you. The unpredictability, too: people scream at the oddest times, and if you’re not watching the game, that could be the worst possible thing that could happen. All the way down to the strong smells of cotton candy and the garlic fries.
Those things would just send C.J. into a tizzy. He would throw his head down on the concrete, just trying to get some stability in his body. He’d bite his hand and have wounds on his hand.

I bet a lot of your audience would understand, as you guys do, that I needed to take away my expectations of what my experience was gonna be with C.J, and adapt it to what was right for him. Once I grieved that he wasn’t gonna be the next Johnny Bench, I was able to really see him for who he was and know what a beautiful soul he is.

We would go down to the ball park when nobody was there; that was the experience that he and I were able to share. Just the grounds crew guys were out there, and they got a chance to know C.J. Our best friends at the ball park weren’t the other players; they were the grounds crew guys. They’d let C.J. run all over the field. When they were watering the field with the sprinklers, they’d let C.J. just run out there and get wet. I would cry just enjoying seeing him comfortable in his skin.

Sharon daVanport: Aw. Isn’t that sweet, Tricia?

Tricia Kenney: It is. It’s so awesome that you did that. A lot of people just keep trying to force that image of what they think a child is supposed to be like, completely forgetting the individual.

Jim Gott: It took me a long time. Please, you guys. I’m sharing those positive experiences, but it really took until Danny was diagnosed. We went from 1988 when C.J. was born to 1993 when Danny was born. That’s a long time. I had these occassional experiences of joy with C.J, but as far as me accepting C.J. and autism, and then accepting my son Danny and autism, it took a long time—probably until ’95-’96 when I stopped playing baseball, did I realize what my first wife was going through; then understanding what Cathy was going through on a daily basis. Understanding the 24/7 that a special needs child brings into a family.

Sharon daVanport: And the dynamics that it has. That’s very humbling, and so good of you that you’re out there speaking about things like this, Jim. To people who might say to me that I probably don’t understand what they’re talking about when they speak of the frustrations like you’re talking about, I say: “Well, I am the mother to a son on the spectrum, and I hear the stories my mother tells of when I was younger, because I’m on the spectrum.”

My mother used to just cry, and she’d try to tell my dad and my aunts and my uncles: “Something’s going on; something’s wrong.” You talk about how C.J. screamed and cried and had all these sensory issues. I did, too. My mother just did not know what to do, and this was before there was even an available diagnosis for Asperger’s. She had no idea what was going on. I think she’s a saint to have gone through all that.

Then to hear you explain all of your experience, you make it so real. You say that it took that long for you to really come to terms with everything. I think people need to hear that, so they don’t beat themselves up all the time, and understand that there is a method to the madness. You can grow to accept these things and who that child is.

Jim Gott: Sharon, do you remember what you were experiencing when you were young? When you were crying and frustrated and not comfortable in your environment?

Sharon daVanport: I do; I’ve blogged a little about it. One incident—I think I was three—I was outside playing, and all the sudden I just fell to the ground and started screaming. The noontime whistle went off, and I felt pain, literally, like needles poking through my head and ears. My feet hurt. I just fell to the ground, just beating the grass and screaming.

My mother came out, and she had no idea, because I had always been inside before when the whistle went off. My mother was really confused; I remember her coming out and trying to pick me up and saying: “It’s okay. It’s okay.” She thought it just scared me. I couldn’t express that to her then, but as I got older and I would say: “That hurts!” when I’d hear something. Or I would bite into something; I would say: “That tickles my teeth.” I was so sensitive that things could tickle my teeth.

My mother got to figuring out that I was just real sensitive. But she had no idea what was going on. She had no idea why the hysteria, but I was gradually able to explain those things to her. It was pain. It was so much pain, Jim. I can’t even begin to tell you how bad it hurt.

Tricia Kenney: We had such different language back then, because we didn’t know any of these things. The same thing with my mother and my siblings. I was always just a little different, but that was okay; every child has their own quirks. But we didn’t have those words to go along with things. We would say: “Oh, I just don’t like bright lights; they bother me.” It wouldn’t be like: “I have sensory issues.”

Sharon daVanport: Or “It causes pain.” Now they’ve done a lot of research; they know certain lighting can cause migraines and things like that. But when I was suffering from migraines as a child, my mother might’ve thought I had a stomach virus because you get physically ill with migraines. It wasn’t a stomach virus; I wasn’t running a fever. But I didn’t know how to explain to her that I had this headache that was just killing me. There was that communication deficit that I also had.

I’m so glad to see it come full circle. Parents do ask me those kinds of questions, Jim, and I think that they’re important to talk about. I try to blog about it as much as I can. I’m trying to get better about it. But I can promise you, when C.J. is doing that, there is something that is overloading him to the point it’s causing pain. It really is.

Jim Gott: Wow. That’s so interesting. Absolutely I need to know those things. I think that I’ve just learned so much from others that are on the spectrum. With my story, the way it kind of evolved is, when I got done playing basebal in ’95, my wife and I started to talk about what we were gonna do next. Cathy just felt that there was a need, not only for our kids and what their path was gonna be in the educational realm, but for so many other kids.
After Danny was born when I was with the Dodgers, they did a really big piece in the LA Times just about our experiences with autism, mostly centered around C.J. When I was on road trips, Cathy would take C.J. to typical things for a three to five year old. So they went to Gymboree class. The moms are all ready for class to start; they sit down on the mats and do criss-cross applesauce and laugh. All the other kids are doing it, but there were noises and other things going around out there and C.J. was jumping out of Cathy’s arms like there were wolves coming after him. He’s jumping over people and spitting on people.

Every day there were calls [from preschool] saying: “C.J.’s just not appropriate.” Very kind people, willing to take him in, but it would never last. Then finally we got to a school called Villa Esperanza; it’s a Down Syndrome school in Pasedena. They had just started a brand new pilot program; they had two classrooms with nine kids: one for preschool and the next for kindergarten and first grade. We were lucky enough to get C.J. in there. Cathy and I dropped him off that first day. We walked him into the class; there were very nice teachers and nine kids, and there were three adults that were in there—a 3-to-1 ratio.

C.J. went in there and Cathy and I drove away and crossed our fingers. We stayed by the phone all day long, and no call came. We drove in the car line; it came up to being our time and the teacher, Kathy Holloman—who is still with us today at Education Spectrum—walked him out, opened up the back door, helped him into his car seat, plugged him in, and said: “What a beautiful boy he is! We can’t wait to see him tomorrow.”

Sharon daVanport: Aw.

Jim Gott: What an experience for us. It took a long time to get there. Again, I was playing most of the time, but it was almost three years before we got to that spot. I give a lot of credit to my wife Cathy being able to suck it up and get through it. Again, she didn’t do it alone; she always created a team around C.J. She needed more information. She needed to go from doctor to doctor. She was willing to be patient to do that.

After that experience, the article in the LA Times about Villa Esperanza and this program came out. They were flooded with calls; there were over a hundred calls on that very first day of families even as far away as the East Coast, saying: “How can I get my child into this program?” There was a family from New Jersey that was ready to move immediately to experience that program.

Seeing that there was such a need for that, my wife, who is very brilliant girl, started Education Spectrum. We started with just a couple families, and here we are 13, 14 years later and we’ve been asked to model this in different areas. We didn’t wanna lose the integrity of it. We’re able to serve a little over 200 families during the week. We have our teachers in the school district during the day either working as advocates for families or as a support system for the school district, and being able to set up strategies in the classroom to be able to handle the inflow of all of these kids.

We’re at epidemic proportions of 1 in 100, and we haven’t even seen that impact our school system which is completely overloaded already—not only with being able to handle our kids, but also with having the proper classrooms set up and the proper opportunities there for our kids to succeed. As we know, it is paramount for our kids to be able to be pushed, and to be able to be in an envoronment that they can tolerate.Not only are these kids gonna be in our community and we want them to be thriving members of our society, but these kids have got incredible skills.

Sharon daVanport: They do.

Jim Gott: I think that the next wave of incredible things in animation, in graphic design, in creativity is gonna come from this really specialized, beautiful population of autistic kids. I think it’s important for us as parents to be able to help create the avenue as you would for a typical kid. I fight for my typical kids just as hard as I do for my special ed kids. It’s important to do that.

That’s where it’s gonna happen; the grassroots is what’s gonna make the difference. It’s not gonna be some educator that’s gonna have the light go on and say: “This is the way to do it.” It’s gonna be because we as parents in the trenches all day long understand our kids. The experiences that you guys have are able to enlighten us and help us understand just from your perspective not only on what kids on the spectrum are dealing with, but how we can assist to be able to thrive in our world.

Sharon daVanport: This is so nice. I’m so glad you’re explaining all of this, Jim. When you say that Education Spectrum helps families with their children through the schools, do you contract with specific school districts there in California? How can people utilize Education Spectrum?

Jim Gott: That’s exactly what we do. We’re multifaceted; we are contracted with a number of school districts in our area.

Sharon daVanport: What school districts would those be, so we can let everyone know?

Jim Gott: We’re in the San Gabriel Valley, so we’re all the way up into the Santa Clarita school system, all the way down into San Marino, Pasadena, La Chinata. Burbank and Glendale are two other ones. We could be even further, but the specialists that we have—Kathy Holloman, Diane Howard, Nathan Roettger and two years ago we hired on Dr. Laurie Stephens, so we have a clinitian on staff who not only is doing the same thing in the school district, but she’s also able to help diagnose and to be able to put proper educational placement in place for our kids.

With our individual clients, we are able to be involved with their IEP process at schools. A lot of times there’s adversarial situations, but because we’re coming from such a humble place, we’ve been able to really team up with school districts that we’re not contracted with. All kinds of people that you would think would be in an adversarial position when we’re asking for certain things have come to us when we’re not even contracted with them and asked for our advice on how to be able to do it.

What we are is just a really practical way of doing things. We’re not extremists, by any means. We’re the first person to say that a child’s not ready for full inclusion when families are even really advocating for that or the school system is, just because they’re overloaded in their special day classes. We’ve been able to create a really strong reputation of being really practical, honest advocates for our kids.

The other thing that we’re doing now, too, that I think is really important: we are isolated in this really small area, and we’re talking 1 in 100 [kids are on the autistic spectrum] in Indonesia, just as we’re talking about right here. My heart breaks for any family that doesn’t have the ability, whether it’s through information like what you guys are providing for everybody, or the actual physical means of being close to somebody that could help their child, or to the extreme of not having funds to be able to do it, or if there’s a language barrier.

I just feel for the family that is struggling. I understand; I had a family breakup because of this. I’ve seen it around me, and I know how difficult it is. I feel the anguish of families. The beautiful thing that I’m able to participate in at Education Spectrum is that I help facilitate classes in the afternoon. You can call it “social recreation” or “social skills classes.” I have the joy of being able to work with these kids, and see these kids just brighten up when you’ve been able to tap into something that they have confidence in and see their self-esteem built.

The other thing is that every day I get a chance to open the door and see these valianyt, Viking moms that are standing tall and fighting for their kids. I’m just so proud of them and grateful to be in their presence. On the weekends, I open the door and see the dads. I see these dads that have been working hard all week long and have no clue what’s going on with their kid. They’re wondering: “Why are little Johnny or Jill biting themselves?” or “Why are they throwing themselves on the ground?” I see the look on their faces.

You can’t solve them problem for them right there, but I’ve really seen how important it is for a fellowship to develop. When the other dads get a chance to go and have a coffee or just talk at the door for five minutes, and week after week after week you start seeing these dads’ faces brighten up. When their kid comes out, even if their kid hits them or starts to run away, you see that they’ve made a connection with their child already.

From my experience, it took me a long time to really be able to connect with my boys. I still struggle with it; I ask God to just take it away from me sometimes, but I know that I’m where I am for a reason. I connect with beautiful people like you guys that are in the trenches and are able to share the work out there, so thank you again for having me.

Sharon daVanport: I appreciate you being here; I know Tricia does, too. As you were explaining Education Spectrum, it sounds like you do after school programs. Do the kids just go straight from school to Education Spectrum?

Jim Gott: They do. Usually everything is afternoon-based, other than on Saturday mornings. After our teachers are in the school district and seeing kids and being on IEPs and helping out the families and the schools, they come back. We have group classes in the afternoon. From 1:00 to 5:00 we have 15 minute classes, where we are working on a specific curriculum.

The younger kids are between 1:00 and 3:00, because the older kids aren’t out of school until 2:50 or later. All the classes are very structured; when the younger kids come in, they’re actually in school, they’re verbal. We’re working on their skills of being able to attend in class; to follow what is happening; to follow a group direction; for them to be able to take cues from their classmates and not so much from the teacher.

We wanna get them less dependent on the teacher. Whether that’s a physical prompt, where we’re helping hold their hand and walk them to their chair and we want them to be able to understand: “Okay, Johnny or Jill, it’s time to go to your chair,” all of these stages take time. Then to see that the child knows that when they come in and see the chairs set up in front of the whiteboard, they go and do their routine. They disengage from their parent; they say hi to us; they walk to the chair and they sit down. That can take weeks to be able to get to that spot. Then up on the top left side of the whiteboard, we’ve got the top five things we’re gonna do in class: from greetings, a story, and then we play different games that will help teach them different social skills.

The other thing that’s just brilliant that Dr. Stephens does, is that when the kids come into class and they finally sit down, we have different colored index cards. They pick them, and then we put their name on top. Everything from them being able to have their attention on us, and then verbally tell us what color card they want: “I want a blue card.” Then they tell us their name: “It’s John.” Then they have to spell their name. They hold that card. Then during the story time and the feelings time and the different things that we’re doing up on the whiteboard, they will get little stickers that we’ll put on the index card.

So they’re getting immediate feedback for doing what we’re asking them to do: attending in class and following the directions. By the end, these kids are so grateful for the ten or 15 stars that they’ve got because they listened to the story. “What’s the story about?” “It’s about an alligator.” “Way to go! You get a sticker!”

At the beginning, after they get their card, they come up and they say: “Hi, everybody.” Then everybody in the group needs to say hi to them to get a sticker because they stayed attentive. Then the person up front asks them to come up; they’ll come up and walk in front of them. Sometimes it’s hard just for our kids to do that—walk up and be in front of a child.

I was one of the parents who said: “You gotta look him in the eye! Look him in the eye!” and what I really understand now is that that’s too much sensory information coming in sometimes for our kids. So just having somebody walk up and stand in front of a child, even if they’re looking down they’re engaged with the child, not looking them in the eyes. But they’re there; they ask the question of the day; everybody gets another star.

It’s a really exciting thing, because by the end of the day we count up how many stars there are, and then we have an activity, whether it’s Hyperdash or something that people take turns with. We’ll put it up on the board and they’ll get immediate feedback that they did well. The two top sticker-recievers will get a blue chair. We’ve got a bunch of orange chairs, but we’ve got just a few blue chairs. We saw that the kids were fighting for the blue chair all the time, and Dr. Stephens said: “Hey! Why don’t we use that as a reward?” So they’re excited that when they come in next week, they get to take their blue chair. Just seeing these little five and six year olds so proud of having a blue chair because they know that they were attentive in class last week, that gives everybody else a reason to do it too.

Sharon daVanport: Right.

Tricia Kenney: I am just so impressed with this program, and I’m really impressed with you and what you’ve learned. Your enthusiasm just shines through, and I think that’s so impressive. It seems to me it’s along the lines of an ABA type of thing that you’ve got going on.

Jim Gott: Correct.

Tricia Kenney: So there was some training in ABA theory for that?

Jim Gott: Correct.

Tricia Kenney: I’m curious: are you trying to spread this out at all to the rest of the country?

Jim Gott: That’s a great question, Tricia. What we have tried to do more than anything is just understand that we can’t do it all, and each step that we take in any direction needs to be something that is very thought out and very methodical. We’ve started to do some training. We’re working with aides, parents and teachers to give them a different strategy. We’re also working with doctors and clinicians to help them understand.

Our staff are unbelievable. They are so passionate. You hear what I’m feeling, and it’s my excitement for my children.It’s affecting my life, and I’m so grateful to be around these people. These are people that don’t have kids on the spectrum. I see Dr. Laurie Stephens and Kathy Hollowman; this is their passion.

I played baseball and I couldn’t wait to get out there. When I got a chance to go to Riverfront Stadium for the first time, I got there before anybody was even there just because I wanted to go stand where Joe Rudy from the Oakland As made his incredible catch. I wanted to stand back where Johnny Bench stood. I love baseball; it means so much to me. Even today, I can’t wait to talk about it. I’m with people who feel that same way about autism.

I’ve stared a new website called UniteAutism.com. We’re looking to be able to have not only a social platform—because it’s so important for families to be able to gain infomration—but also a professional platform. To be able to have the specialists in everybody’s different area be able to come to our website, sign up, and talk about what their philosophy is. Understanding what they’re learning about autism and what they provide.

It’s in the development stage, but it’s up right now and we’d love for people to join in—it’s free—and just jump into this place. Once we learn our child has autism, is on the spectrum, where do we go? You turn to whoever’s closest. That could just be you go to Google and you put in “autism” and the 31st thing that comes up becomes your platform.

There are a lot of things out there that are not fully beneficial for our kids. Whether that’s having the hope that there’s gonna be a cure for their child, that some kind of therapy is going to bring them out of this, I think that those kind of things are harmful for families. What I wanna do with UniteAutism is have a jump-off place. We wanna just be a jump-off place where people can go and ask certain questions not only of our social community, but also of the information side of it, and learn a little bit more before they join Autism Speaks or some other group that becomes their rallying spot. We just want people to have a place for more information.

The one thing I’m really excited about is that we just teamed up with the California Institute of Technology. They’ve got scientists at the Autism and Asperger Syndrome Research Program doing this one study now just in eye movement. They’re studying how they eye movement of a typical person and of somebody on the spectrum differs. They’ve got all these different contraptions, and they use MRI machines to see how the brain is functioning. It’s incredible, and it’s just at the beginning stages, so I’d really excited for people to go and check that out.

What they’ve seen is that if a typical person is having a conversation with somebody, they’ll be looking at their eyes, their mouth; they’ll look away from the person a little bit; they’ll come back. That’s what the brain needs to be able to process all of this information that happens in a social conversation. What they’ve seen with most adults and children on the spectrum is that most of their eye movement is focused only on the mouth.

Tricia Kenney: I can tell you just from how it affects me: trying to talk to somebody and stare them in the eye is very freaky to me. It makes me feel very uncomfortable. It’s such a personal thing that you do when you’re completely in love with someone, so it makes me feel very weird if I do that to people I’m not in love with. It’s like it gets too involved; it’s too deep. So it’s very hard for me to just stare somebody in the eye when I’m talking to them. It feels very weird. That’s just coming from my perspective—I’m not sure if everybody feels that same intensity.

Sharon daVanport: It’s good to ask somebody on the spectrum questions, like you do, Jim, because oftentimes when somebody asks me a question, my first thought is always: “I wonder why they’re asking me that?” If I’ve done that all my life, I think that that’s normal and everybody else does it. Then when I give my answer and they’re amazed, I’m thinking: “Oh. You don’t do that?” So it is good, because I just assume; I don’t always know.

One of the things has to do with eye-contact. When I was finally told a couple of years ago: “You do look people in the eye, and I see that you can carry on a conversation. But I also notice that you will look away and look around.” They asked me if I felt uncomfortable, and I said: “I can concentrate better if I’m not looking someone in the eye. When you look someone in the eye you can see their mouth moving, too, and it’s very distracting to try to do both at once. It just overloads me.” I just assumed that everybody had that issue. I didn’t know until someone asked me. It’s probably good that you do inquire about those things.

Jim Gott: What a fascinating thing. They’ve done studies and they know that 75 percent of conversation is non-verbal, and if you’re not able to see the little innuendoes or the facial expressions or the body language, the eye movement, the expressions in the eye…there are so many different, subtle things that are important for communication.

I was telling you about what we’re doing with the little kids. In the afternoons when the older kids come in, our classes are specifically set up for teaching that social way of communicating. We spend so much time on eye movement, even. We play games that will do little subtle things where we won’t be saying anything—it’s almost an “I spy with my little eye” kind of game. Somebody will come up and look at something, and people have to follow where their eye is. It’s very interesting to see how broad our kids will look. They’ll look in one direction, but they’re not specifying any one thing. We help them zero in on the trash can that’s over in the corner and what color it is and all of those things, just to help them understand that eye movement.

Then we’ll take it all the way to understanding what a conversation is, and give them the dos and don’ts of a conversation: Don’t be a conversation hog and understand that conversation is like a ping-pong game. You’ve gotta hit the ball back and forth; you’ve gotta be able to share information and get information back. It’s important that the other person is part of the conversation and it’s not a monologue. You have to be able to tolerate a subject that you’re really not into, even if it’s somebody that you really care about.

It’s just fascinating for me. I can’t wait to go to work every day, just because I learn so much about human nature and how tough things are. God made our bodies and everything’s so complicated. When one little facet of it is out of whack, boy, it just affects everything.

Sharon daVanport: Right. We’ve got ten minutes left, so I wanna make sure you have time to tell about your son Danny’s website, Danny’s Farm.

Jim Gott: Yeah. We’re so excited. Again, I’m the spokesman for this, but my wife Cathy is the one who…As passionate as you hear me about this, she is just as passionate, if not more. What Cathy loves to do is put pieces together. She can be in the trenches with our kids and she has compassion for all the other kids, but her specialty is bringing the outside community together.

The last few years, we saw that Danny was going to be graduating from high school in the next couple years, and what is he gonna do? We didn’t see at that time that he might be going to college; he’s really talking about it now. But we started wondering what was gonna happen with Danny.

Danny always loved animals. When you and I were talking, Sharon, you said that when your mom was looking for you, she knew she could always find you up in your room. We always knew that Danny was wherever anybody’s animals were. We’d go to people’s houses, we’d lose Danny, and we’d find him where their animals were. There were so many times we would go to family parties and we would find Danny in the doghouse, outside in the backyard, huddled in with the dogs just having the greatest time ever.

Danny loved animals, so Cathy came up with this idea for a petting farm. The website is Danny’s Farm. It’s just a small, little place. We do field trips there; we have after school programs there. We just have a place for not only typical kids, but kids on the spectrum to be able to come in. It’s completely fenced in, so a family that might have a runner, when they come in the family can go ahead and relax. There’s no way that the child could get out.

We’ve got different pens that have different animals in them. We’ve got a big corral area. We’ve really been able to see that it’s a place that Danny will work when he’s older; we have five adults with special needs that work there. They have a job coach that comes from Villa Esperanza. They have a 9 to 5 job; they’re working on the farm. They’re cleaning the stalls; they’re going out in the community and they’re getting food for the animals; they’re caring for the animals.

The beautiful thing is that when we have field trips that come in, just seeing these adults on the spectrum that have never had something that they could really take pride in have pride in Danny’s farm. When these tours come in, they’re there and they’re opening up the gate and closing the gate so the animals don’t come out. They’re able to speak to the people that are there asking questions: “What kind of an animal is this?” Or a child on the spectrum that is afraid of an animal seeing another person struggling with this who has been able to overcome and be happy in their skin hold the hand of a child that’s afraid of an animal. Someone who knows the softness of petting a sheep or how grainy and rough the skin of a pig is. Just seeing a kid have that experience provided by somebody else that’s experienced it, it’s really a wonderful thing.

Like Education Spectrum, it’s just a small, little thing and we’ve seen brilliant things all over the world that are happening. Just like what you guys are doing, how important it is to share the information. I think all of these grassroots things happen, whether it’s a job placement for our kids when they graduate from school, or places where families can get support, or a number of different things in the middle.

I think we as parents and we that have experienced this are the ones that are gonna be out in the front leading the way. Again, I’m honored to be on this show with you guys, because you’re touching so many people out there that might not live in Los Angeles and have Education Spectrum or Danny’s Farm or all these great things.

I wanna motivate other people to wanna study this. We need more Dr. Laurie Stephenses and you guys that are out there leading the charge, so thank you.

Sharon daVanport: We need to have you and your wife on. We need to get Cathy on here, because you have so many things going on.

Tricia Kenney: What a great model for the rest of the country this is. Where did you get the autistic adults from? Did you put out an ad, or did you hire them from somewhere?

Jim Gott: We did. When Cathy thought of this idea and found a location for it, she immediately reached out to the community. She knows how important the community is. We’re working with the LA County supervisor, Mike Antonovich, who is just a wonderful public servant.

Sharon daVanport: I was just gonna ask if we could get the people that you’re talking about—the doctors and Dr. Laurie. I would love for you to be able to set up an interview, so that they could come on and talk to Tricia and I, too. They could let everybody know exactly how the program works.

Jim Gott: I’d love to. Dr. Stephens was very excited to share about getting this together. I’d love for you guys to be able to get the Caltech people on. These people are just brilliant! Listeing to scientists talk about how fascinating brains are, and eye movement. I would love to be a servant for you guys, to let you enjoy these different people. I will continue to listen to your guys’ show, and look at your website and your blog, because I can’t get enough information.

We need the public servants out there that are rallying for different health care laws to provide for our kids. We also need new insurance ragulation, because these treatments, whether it’s ABA or sensory integration or whatever is very expensive, and families can’t afford it—especially in the times that we’re in right now. We need to have other support out there. There’s wonderful philanthropic groups out there that can help, too. You guys are doing a wonderful thing standing out in front, but it needs to come down to an individual level. It’s gotta happen in everybody’s community, and we need to keep fighting.

I was talking about opening the door and seeing these valiant moms. Those are the ones that are changing the school system. Those are the ones that are getting legislation passed to cover the insurance and all that. I just encourage people to get out of their comfort zone and start speaking up for our kids.

Sharon daVanport: You are just awesome about this. We’ll be in touch, Jim, about coordinating some different shows and getting some of these people on. I think this is so important for the word to get out, so people can model different programs. I wish we had something like Education Spectrum here in Nebraska, here in Lincoln.

Tricia Kenney: It’s just a wonderful model, and I’d love to talk with some of the autistic adults who are working there as well, to see the impact that’s having.

Jim Gott: Let’s do that. That’s a great idea, Trish. They would love it.

Sharon daVanport: That would be so great if we could do that, Trish. That’s what I worry about the most. My son is 16; he’ll be 17 soon. I think the same thing that you’re thinking: “What is my son going to do?” Is he gonan have the tools and the support to be able to do certain things. He has some co-morbid diagnoses tht he deals with; it’s not just Asperger’s. I do have some concerns there. I think that this is so important, that we can talk about these success stories and know that they can have a full, productive life.

Jim Gott: Absolutely.

Sharon daVanport: We’ve only got a minute left, so let’s go over the websites really quick.

Jim Gott: We have UniteAutism.com; the second is Education Spectrum. You’ll get a lot of information there. We’ve got a newsletter, so I encourage people to sign up for it. And then [Danny’s Farm]](http://www.dannysfarm.com/ “Danny’s Farm: Community Integration and Vocational Training for young people with disabilities”) is just a really cool place. It’s just a passionate thing as a parent to see the pride that Danny takes in that. Those are the three, and I just appreciate the time with you guys today.

Sharon daVanport: Well, thank you so much, Jim. We’ll be in touch, okay?

Jim Gott: Thank you. Stay warm!

Sharon daVanport: Wow, Tricia. That is just so much information. I’m gonna have to go back through and listen to the show again, because he has just so much information. These models like the Education Spectrum and then employing people on the spectrum at Danny’s Farm. This is just great what they do.

Tricia Kenney: I love the depth of his understanding and acceptance. That’s pretty rare, and that’s what I think needs to be spread out there.

Sharon daVanport: Well, let’s say bye, because I think we’re getting ready to get cut off. [Laughter] We’ll see you next week, everyone.

Tricia Kenney: See you next week. Take care, everyone.

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