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Extraordinary Profiles
January-February 2011
68
Cover Story— Barbara Cull– A Visionary and Advocate for Children and Families in Need
75
Exceptional Children’s Foundation– Life Measured in Love
CONTENTS
Inspiration 83
Now is The Time to Claim Your Extraordinary Life
85
Mirror, Mirror of Myself
86
Enrico Thomas—New York’s Subway Artist Transforms His Abused Childhood Into a Life of Masterpieces
The Lighter Side 96
Don’t Misunderstand Me
398 Adopting Some New Resolutions
Cover Photo by Lisa Kelly
99
Profile Resources
100 Writers and Contributors
The world is in your hands. You have the power to change it .
barbara cull Barbara Cull has dedicated her entire life to helping children and families challenged by learning disabilities, developmental delays, emotional challenges and chronic medical problems. As a person who struggled with a learning disability and raised a learning-disabled child, she thoroughly understands the time, effort and compassion required to work with these individuals to help them become successful and productive citizens. She has been recognized locally and nationally by the White House, federal, state and local authorities as an innovative leader in special education. She gained personal experience from a serious illness which almost resulted in her death. This gave her a renewed vision and she decided to use her second chance at life to prove that every child can reach his or her full potential. With that in mind she mortgaged her home to start Education Resources and Services (ERAS) to provide services to at-risk children. For the past 35 years, as the Founder and Director of the Kayne-ERAS Center in California, Cull has been determined to affect positive change in these precious souls. She has developed a best-practices educational model that received national and international commendation for its ability to be replicated in other communities. Both Cull and the ERAS Center have been honored with awards, including the National Association of Women Business Owners Joan Sheridan Memorial Award, Ernst & Young’s 1996 Entrepreneur of the Year Award and Champion of the Children Award. It was an enlightening experience to hear Cull speak of her work through ERAS, as well as her partnership with the Exceptional Children’s Foundation.
A Visionary and Advocate for Children and Families In Need
68 | Exceptional People Magazine | January-February 2011
Monica: In 1980 you encountered a lifechanging event pertaining to your health, which gave you a new perspective on life. Barbara: Yes. I went in for a routine surgery, and there was a thing called a pulmonary embolism. I almost lost my life. It affected the healing process to the point where three times they lost me and three times they brought me back. The last time when I went to visit our higher power, I asked him if he would let me live to raise my two kids. I said I would devote the rest of my life to help make the lives of other children better and that I would find a way to take care of them as if they were my own, especially those with special needs. So for me it was a second chance to do what was intended for me. Sometimes you don’t wake up to these things unless you’re challenged. It took a year for me to get out of the bed because it took a year for the wound to heal. That time was probably a very important time for me to reflect on what I needed to do. I’ve been in education and in special education. I have a child who, if it hadn’t been for the fact that I was working at UCLA and had a several interns under me, would never have learned to read. In second grade they called me and said, “Your son’s a bad kid. He just punched somebody in the face.” I said, “My son?” I said, “We’re hippies. We don’t hit people.” We solve our problems with words. There are no guns in our house. There’s nothing like that. I was really strict about it. They were good kids. I knew that something had to be wrong. Then, of course, I realized that being in the field my kid was like the kids I had been working with. He was not able to read and write in the second grade, even though he
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Extraordinary Profiles
was identified as being gifted in kindergarten. They were now going to send him off to “the special ed class”. I couldn’t bear that so I said, “I’m taking him out of this school. I’m going to move him over to the other school that UCLA is working with up the street. I’ll find a way for him to go there in the morning to his gifted program, and I’ll get him at noon and take him to my place to see if we can’t help him. I did that for two years and, thankfully, with the help of these wonderful people who eventually became my staff when I started my own place, he learned to read. My thought was that I could give that gift to another parent – in those days there was no funding. I decided if there was something I could do, I would put my money where my mouth was, and I mortgaged my home. I had envisioned a community resource and service center where all kids and families could have access regardless of the nature of their disability. One of the things about special education is they can be prejudiced sometimes. They discriminate. “You can’t bring your autistic kid here. I don’t want my kid with that kid.” I said, “This is not going to happen for me. This is not what I want to happen if it was my child.” So I decided I wanted the children to get all that they needed, and if I had to raise money, I would. In the beginning I figured out ways to bring dollars in, in addition to fundraising. Who wants to make money off the backs of children? Not I. So we offered opportunities for training. We would get interns in so that we wouldn’t have to spend as much on staffing. We tried to be as creative as possible. I also believed that these children needed a gifted curriculum. It didn’t matter if they had autism or other developmental delays. They needed that enriched curriculum just like gifted kids, if not more. We included all of the arts and my kids became entrepreneurs. We ran a vegetarian café. We tried to do a lot of things that not only helped them learn and understand what they were learning more effectively, but integrated them into the community.
the world. It’s what’s in their heads that matters. So what I learned from it is that there are ways to help these children, that what they need to receive is intensive services. They receive thirty minutes of speech once a week. They don’t receive the intervention that they need to turn things around, to give that child success. So what I learned from working with my child is that it had to be something that didn’t deprive him of being part of the mainstream. We are called a mainstream school even though we’re a state-certified non-public school. We are probably the most integrated school you’ll ever see. Monica: You also had a personal experience with a learning disability. Barbara: Yes. I didn’t know that until I was in the business, as they say. I realized it because I too have difficulty with writing, getting my words on paper. There are all kinds of dyslexias or learning differences. Even though I could read, I couldn’t write. I started ditching school in the second grade. By the 10th grade I wasn’t going anymore. I was going to work. Luckily, my parents both worked, so they didn’t know where I was. I would get home in time to get my brother and sister and make dinner. I couldn’t go to school anymore. I couldn’t learn there. I went to work in a hospital and learned science there. Finally, when they saw I didn’t have all of my credits, thank God I had been working in the hospital all of those years doing lab and x-ray work. They gave me credits and said, “Just get out of here. Go away, and don’t bother us.” They thought I was nuts, so they made me take a psychology test to prove that I actually could do school work and show up every day.
Monica: The fact that you had to work with your son to try to help meet his needs, what did that teach you? What did you learn from that process?
I attended City College. Foreign language was a nightmare for me. I got through two years, and that was it. Geometry was the real bane of my existence. Luckily, there was a professor who said, “Why don’t you tell me the answers? We know you know the answer.” I began to realize that instead of trying to get everything down, I could use my voice. I would cry when I had to speak in class. I couldn’t even open my mouth. I was so humiliated by my “lack of ability”. But I learned over time that was going to be my strength rather than my greatest weakness.
Barbara: Well, the first thing I learned was after my son said to me, “Can’t you just be my mom and not my teacher?” Children find it very difficult to fail in front of their parents. You can be the most wonderful person in
One thing about people with learning differences is that they can’t always perform on demand. One day they’re on, and one day they’re not. That’s one of the challenges resulting from these problems.
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Extraordinary Profiles
Monica: Despite those obstacles, you managed to get a master’s degree in education and also business. Barbara: Yes, I did because it was for my center. It’s like when you have a mission and a vision, and you know that it can help make a difference, but you’ve got to make it happen. If you don’t go through the struggle, it’s not going to happen. If I hadn’t had professors or people who understood, I don’t think I would have made it through. Monica: You have achieved an amazing level of success in the field of special education, both nationally and internationally. The model that you have developed has proven to be a well recognized model. How does it feel to know that you have achieved something that is recognized internationally? Barbara: I wish I could do more. I wish there was a way to share this with as many people as possible because people all over the world are challenged to make a life for their children. As I’ve always believed, the only way you’re going to have a participatory government, a place where there is democracy, a world where there is equality is when people have enough information to know how to make things happen for themselves. I really believe that the only way we will ever have the best world is through education. I don’t mean just knowledge, I mean knowing how to solve problems. I think education should be more than just teaching kids information, teach them not only to help themselves but how they might be able to contribute to others. This summer I did a project with the kids where we took out all the old, broken toys and junk we had in the storage and all the blocks and the puzzles and everything. We pulled it all out, and we decided we were going to each make it our dream. So they built their dream out of these recycled materials that were going to be thrown away. Each one had to tell me how they were going to do this, if they had to go to school, what was it going to take? And you know what? Every one of them was going to save some part of the world. They were going to save animals. They were going to save the manatee. They were going to save people. They were going to do something to make the place better, and I was so inspired by all of that. Monica: You merged the Educational Resources Services Center and the Exceptional Children’s Foundation. How did the merger come about?
Barbara: My original vision was to have a center that served children from birth and adults through old age. When the opportunity arose, we had babies and older people and we had everything else in the middle. It seemed like a perfect fit. Because our values are so much the same, it was a good fit, and we were able to strengthen both organizations by being partners. It was a good business decision as well as a way of achieving the final result. Now the best part is that the pieces are there, all the components, the problematic pieces. There is a model for each of the aspects, ranging from what a child might need all the way to the senior citizens. Some of my clients are becoming senior citizens. Now the time has come where we can take all of this to the next step. My current project is what we call the Institute. The Institute is where we bring university people and researchers, community people, leaders, organizations together to identify the challenges that we are facing to determine what we should be looking at and studying. So our goal for the Institute is to take this data, bring it together, bring these various people together to collaborate and identify what we can do to transform education to meet our children’s needs. Monica: What can parents do to help foster the care of their child who might be challenged by a learning or developmental disability? What can they do to get the child on the right track? Barbara: They must become an advocate. They must become as knowledgeable and informed as possible. There are laws and there are rights that children and families have. When I started there were no programs; there are now because we fought for them. There were no schools. There were no behavior management services for families with autistic children because no one was fighting. So parents should make themselves as knowledgeable as possible. Your kid can succeed if they get what they need, and you are probably the only one who’s going to be able to get it for them. I know everyone is in difficult financial times. I know the districts don’t have their money, but there’s nobody that’s going to help your kid but yourself in the end. You’re going to have to be the one that hangs on. Monica: What are some of the main sources of funding for the organization to keep it operating? January-February 2011 | Exceptional People Magazine | 71
Barbara presenting the Golden Bulldog, the Kayne Eras mascot, to Exceptional Children's Foundation CEO, Scott Bowling at the 2007 gala honoring the merger of ECF and Kayne Eras.
Barbara: The main sources of funding are some of the fees-for-service that we receive for serving the children that the school districts can no longer serve. The children are placed with us when they feel they’re too difficult and they don’t know what to do with them. The children are sent to what are called state-certified non-public schools which must meet a higher standard of criteria than public schools. So we receive fees for service, or the regional centers may pay fees for the developmentally disabled. We also provide private consulting services to the community. We rely a lot on fundraising, as you can imagine. We raise $250,000 a year for the school and the other monies are for our programs that don’t receive sufficient funds. Monica: How long do the kids stay in the program? Barbara: They stay until they are ready to transition back into public school. If the district won’t pay for it, we’ll supplement that money. We have to find ways to let them get what they need. Let’s say they need to stay in school for three years. They will. Then our goal is to have them graduate from our school. Last year we graduated 25 young people, 16 of whom are planning to attend college, and the others are in vocational training programs. What that means is that those people are going to be able to make a life for themselves. Sometimes kids graduate 72 | Exceptional People Magazine | January-February 2011
out of elementary school back into public school. Sometimes they still continue to need services for several years after that. It depends on when we get them and how much damage has been done before they arrive. They have to have been acting out an awful lot or be a danger to themselves and others before we’ll ever get to see them. Monica: What do you look for in a teacher or associate when you bring them on board to work with the kids? Barbara: Well, the way we actually end up hiring people is by having them interviewed by the team. So the team consists of, let’s say, the speech therapist, the classroom teacher, the counselor, the occupational therapist and the principal. Those people are all going to be part of the interview. What we look for is somebody who has, first of all, the adequate training and knowledge to fill the position. For teachers, they have to have the credentials. Excellence is a part of what the center has always been about. If you raise things to higher standards, you’re going to succeed. If you just say, “So what? We don’t need the best teacher,” or “That teacher is not doing very well with that child. We need to switch them around, or we need to give them feedback or train them,” you’re just doing what the public school does. You’re playing the same game.
Barbara with Dr. Robert Shushan, founder of ECF.
We have to have someone who can show others what to do. From the young woman who sits at the receptionist desk and the person who drives the bus, everybody has to take initiative when they’re with a child who has special needs or that child may be hurt or injured. We train everybody. Everyone is a part of the therapeutic environment, and everyone can be a leader, and they can tell us whether we’re doing things right or wrong. If all the perspectives aren’t considered, what you end up with is one person making all the decisions and those decisions may not be effective for the majority of the people. Monica: Do you focus mainly on the Los Angeles area? Barbara: Yes, that’s where the model center is. We have others replicate the things that we do. We’ve had people come from Korea. We’ve had people come from Japan to see how we work with children, especially those with developmental delays. Then they take it and make it their own, we hope. We share it with them. Monica: How well do the kids interact with each other? Barbara: They do very well. I believe that the beauty of having K through 12 is that that big bear up there who is so cranky and angry because he can’t perform certain academic skills will come down and take care of that lit-
tle autistic kid in kindergarten and be the best teddy bear you ever met. It’s a wonderful thing because I think that we have very strict guidelines in terms of what is acceptable behavior. No one should ever call anyone a name. If they do, they must write a letter of apology or solve it verbally right away. We never let anything fester. No one may ever strike anyone, and if they do, they have to leave the building and come back with an adult, sit down and solve problems with words. No drugs and no gangs are permitted in the building because they attract danger to our little kids. They need to be protected from all of that. The most important part of all of this is that everybody must respect each other and realize that we’re in it together. If we don’t help each other, we’re not going to be successful. We have what is called “In-house”. When I was a kid, and I would get in trouble, my mother would say, “Get in the house.” That meant that I needed to be under adult supervision. We have a counseling staff, interns that go to a room where they can be with this person. If they’re angry, they can talk about it. They can discuss it. They don’t get out of doing their work. Then we discover which is it, the work or is it something that happened at home. Monica: Are there kids in the program who have been diagnosed with ADD? January-February 2011 | Exceptional People Magazine | 73
Extraordinary Profiles
Barbara: Oh, yes, lots and lots. Monica: From that perspective, it seems that doctors quickly and willingly prescribe medicine. Do you believe prescribing medicine is the most effective way to deal with the issue? Barbara: No. I believe that there are so many other alternatives to taking this kid with this energy and teaching him to use it effectively. Is he going to be on drugs his whole life? Not only that, but ultimately, they wear off. They don’t work. So my belief is you can shape the environment to allow them to become successful learners and at the same time learn how to help themselves. We use a variety of other ways. We’ve had success in working with the Mindfulness Institute at UCLA that uses meditation and mindfulness as a way of helping them cope with the challenges. It’s been effective. Monica: Do you think diet plays a role in ADD? Barbara: I think everything in the environment affects our children, whether it’s the pollution, whether it’s the food they eat, the amount of exercise they get, what television shows they watch, all of that affects them. We’re the other half of the equation, the environment. I agree that diet is critical. Monica: I noticed that many of them are so talented and the artwork that they have produced is amazing. Barbara: I always say God never leaves you with nothing. Maybe this is their way of telling us that they are someone, and they have so much to share. I don’t find it difficult to have conversations with them either. They have much to say. They live their lives every day like we do. You have to take time to talk to them and listen to them and know how to phrase words to get the answers you need. They are talented, and they love their art.
Monica: You’ve been doing this type of work for at least 35 years. Prior to that, did you ever think that you would have this kind of affect on so many lives? Barbara: No, I never did. I never dreamed I would be able to open my mouth. I never believed that I would be able to stand before a group of people and speak and that I would have an impact on them and make a difference. I was so shy my mother used to say it was a sad thing to even watch me. I would go into a room, and I would look for a place to hide. I spent the first 20-something years of my life like that. Monica: Do the kids come and go every day, or is there a campus? Barbara: They come to school every day. The group homes that we have are in the community. They live there. They live with three or four other people in that home. People come in to support them and see that they are never left alone because they are vulnerable to strangers, as you know. Eighty percent of all developmentally disabled people are sexually molested or physically molested in their lifetime, so they can’t be alone. They can have their own home, but the people who care for them do not live there. This is their responsibility and their profession. This isn’t a place where they’re going to hang out. My clients live there, but the staff members come and go. Group homes are for the adults. We prefer to serve children in family settings because we ultimately have to heal the family. Monica: Looking back on everything you have accomplished over the years, how would you summarize your life? Barbara: I’m not done yet. I need to do more, and there is more to be done. If I could express how I would like the rest of my life to be, it would be that I continue to do this work so that I have a good reason to get up every day. Monica: What is your vision for the program?
When the kids perform, some of them are so gifted in piano and other instruments. I would watch one child when he began to play and he would become transformed. He no longer looked different. It was like he became whole when he played music. It’s something about that moment when they are in that zone, they’re whole. They become whole. I had one boy who used to sculpt with his eyes closed, and he would be so complete when he was doing it. 74 | Exceptional People Magazine | January-February 2011
Barbara: My vision is that we will be able to share this with thousands of people. That’s my dream.