In this webcast, Dr. Katharine Shepherd, Project Director: Parents as Collaborative Leaders Program and Susan LaVenture, Executive Director: National Association of Parents of Visually Impaired Children share their expertise and passion for supporting parents in developing leadership and advocacy skills. As keynote speakers for the Discover Conference, Katie and Susan share their personal and professional experiences to illustrate the powerful role that parents play in children’s lives.
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Presented by Dr. Katharine Shepherd and Susan LaVenture
Length of time to complete: approximately 30 minutes
CHAPTER 1: Parenting and Leadership
RIFE: Good morning. I have the great opportunity to introduce our two lovely keynote speakers who are to my left. The first one is Dr. Katherine Shepherd, she goes by Katie, and she is the Project Director of the Parents as Collaborative Leaders Program. She teaches at the University of Vermont; she has been there for over 20 years, and prior to that, her experience was in Vermont schools as a special educator.
She has worked in the area of transitions. She got into this area of working particularly with parents through parent-centered planning — the MAPS process — and understanding that building family strengths was critical in providing good services for children with disabilities.
And the second one is Susan LaVenture, who got off a plane at 2:00 AM today. She’s the Executive Director of NAPVI, whose headquarters is in Watertown, but it’s a United States organization. Before she got into NAPVI, she ran a construction company, so I’m sure that that provided her with great skills for what she’s doing now.(laughing)
She really has been the catalyst behind the growth of NAPVI, turning it into a very powerful, strong, and exemplary organization for parents. She has the ability to connect people together and to help them reach agreement, she’s undyingly committed to this field, and it just so happens that she’s also mom to Alex, who graduated from Cornell earlier this year. And without further ado, I will introduce these two ladies. Come on up.
CHAPTER 2: Families as Equal Partners
LaVENTURE: This is going to be fun — a dual keynote.
Dr. SHEPHERD: (laughing)
LaVENTURE: We’re going to have fun. We discussed earlier that maybe we should have, you know, planned a dance step or something, but we didn’t get to that.
Dr. SHEPHERD: (laughing) But you never know. It could happen.
LaVENTURE: (laughing) We are thrilled to be here. I’m Susan…
Dr. SHEPHERD: And I’m Katie.
LaVENTURE: I just want to thank the Discover Conference planning team — I know they’ve worked tirelessly to organize this conference — the Perkins staff, and the New England State partners and volunteers, so thank you so much for pulling this together for us.
We’re going to get right to the focus, because we have a really packed day, and we want to make sure you have plenty of time to reach everybody else and network.
But the main focus of our keynote is that we really want to talk about the importance of families being the equal partners, and for you to be tapping into your voices, and for potential leadership, too. And it can be at different levels, but most importantly, you as a parent, you know your child the best, and one of our founding members of NAPVI — the National Association for Parents of children with Visual Impairments — Lee Robinson said that, you know, “Parents are the only consistent persons throughout the child’s lifetime.” That is, of course, if the child is fortunate enough to have parents, but in most cases. And so your role and your observations and your knowledge of your child is the most significant, and you should feel confident in that.
And we’re fortunate, and we’re going to give examples that in the United States, that — I shouldn’t say “fortunate”; we have the right, but it’s not like that in other countries — that it’s actually in the laws, the Special Education law, that you have an equal partnership by law within the educational planning of your child, so.
And also that another level of parent leadership is that parents joining together, their voices together, can be extremely powerful, and that’s why we have our national parents association, because we can make an impact in legislation nationally. And also, it’s important for collective voices to be together — the collaboration between people who work in the field of blindness and visual impairments and who work in the schools–the regular educators and with the parent.
CHAPTER 3: Parents as Leaders
Dr. SHEPHERD: Before I start saying much more, I just want to say I’m so thankful Susan is here because she called me yesterday —I hadn’t left Vermont yet — and she said, “I might not make it back from Kansas.” And I said, “What do you mean, you might not “make it back from Kansas? I don’t think this is a good thing.” So all the way from Vermont, my partner who was chauffeuring me had to listen to me practice my remarks one of two ways: one with Susan, one without Susan, so I’m really glad that she’s just here to say it her own way because it makes me feel a lot better.
Susan and I have been working together for about five years on the project that we’ll tell you a little bit more about at the end of our presentation, called “Parents as Collaborative Leaders.” And really, as Susan said, we’ve been just really interested in the idea of how parents can tap into their own voices, their own understanding of their child, and then bring it to a somewhat greater leadership level, although we really define “leadership” in many, many ways.
Often, when we first meet parents and say, “Hey, we want you to join us in this kind of leadership venture,” they’ll say to us, “I think you might have “picked the wrong parent; I don’t know if that’s what I want to do,” or more likely, they say, “I don’t know if I’m a leader.” And while we recognize that not every parent is going to take on a huge leadership role that takes them far outside of their family, we do believe that actually all of you who are parents are leaders, and there are a lot of reasons for this.
One is that on the day you first know you have child with a disability, you’re a leader. I think that just by virtue of the fact that you recognize your parenting experience is going to be a bit different from your friends, your neighbors, your sister, your brother, your mother, that takes you down a new path, and that is, in fact, a path of leadership.
When you go to your first meeting — wherever that is; in your doctor’s office, at your school, your preschool — and you start talking about your child with a disability, you’re becoming a leader, because you’re starting to give words to that inner voice that says, “I know what my child wants; I know what my hopes and dreams are for my child.” And so as you become more specific and get better at advocating for your child, you’re becoming a leader.
If you choose to take leadership to another level to collaborate with other parents in your school and your community and take some of your ideas to the educational world, the medical world, the human services world, wherever, you are also becoming a leader, because you’re contributing to the practices that we’re developing and all the many ways in which, hopefully, as a profession we get better and better at supporting you and your children.
And finally, parents who go and get involved at the policy level are really helping to bring about, as we’ll talk about later, new laws, new ways of doing things, new understandings. We’ve come a long way since Perkins started offering services 180 years ago, and that’s because of parent leadership.
And I like to think, too, that really at the root of it all, our kids are our leaders, so no matter what level of leadership you end up participating in, it’s because you have a child with a disability that you’re a leader, and our kids really are our source of inspiration.
Every day, those of you who are parents are waking up and finding new challenges and finding solutions, and that’s leadership. And I think all of us together in this room and in our collective work are really changing the world in lots of ways and bringing a different view of the world and a different view of how we can be more inclusive, more inviting, and support one another. So whether or not we choose to take on a formal leadership role, really everybody here is a leader, and we really believe in that very strongly.
CHAPTER 4: History of Parents’ Impact on Special Education
LaVENTURE: We promise we won’t bore you, but we’re going to give you a brief historical overview of the impact of parents in United States, and which also impacts the world. But first… and that would be for leaders in Special Education and Human Resources and the role of parents. I’m going to start off with, as you heard, in 1829, Perkins was the first school for the blind in the world, right here, where you are today.
Dr. SHEPHERD: That’s leadership. There are so many examples that we could have drawn from, but there are some great ones.
In 1933, there were five mothers who lived outside of Cleveland, Ohio, who had children with different disabilities, and their kids were being completely excluded from school, and they lodged a protest and got a special class established in their school.
Fast forward to about 1950, and we start to see more parents form in more formal organizations. The first large-scale organization was the Association for Retarded Citizens, which worked on behalf of children and adults with developmental delays and was very instrumental in some of the later work that went on at the federal level.
In the 1970s, people who were working on behalf of kids and adults with disabilities realized that there was a strong connection between this movement and the Civil Rights Movement, and there was a lot of work done at the Supreme Court level — parents being very involved in class action suits in which cases went all the way to the Supreme Court, and we realized that a lot of what we had been doing with kids in terms of excluding them from public school, assessing them in ways that use very discriminatory assessment practices, that all those kinds of practices were basically unconstitutional, and parents played a huge role in bringing knowledge of that to the fore.
LaVENTURE: Parents, professionals, and parent organizations including NAPVI, and people who are in the field, professionals that are devoted to the field, continued hard to lobby for federal legislation for children with disabilities and also people with disabilities themselves. They were the main people that established and advocated for the Education for All Handicapped Children Act, now known as IDEA.
IDEA provides FAPE to all — Free and Appropriate Public Education — and contains provisions directly related to parents. Parents are members of IEP teams, they are education decision makers, and have the right to due process. Examples of some major importance in this country are similar to Civil Rights legislation. At the root were parents. In particular, NAPVI, so you can be proud, our organization has been involved for every reauthorization of IDEA. So we have a Special Education law, and about approximately every six years, it comes before Congress again for a review and they open up the law and advocates come and try to change the language, you know, and everybody has their own twist to what they want to change it to, and NAPVI’s been at the forefront at every reauthorization of IDEA.
We were involved and worked collaborating with other people who are blind and visually impaired, their organizations, and the schools for the blind and deaf/blind coalitions, and all of us together influence the… to include orientation and mobility services as a related services in the IDEA law, so it’s specific… you can put it in your IEP to have those services. We were also involved in strengthening the language for Braille in legislation.
Those are just a couple of examples, but we also are there to protect parents’ rights, and making sure that kids with visual impairments and deaf/blindness are protected with the law.
CHAPTER 5: Schools and Parents Working Together
Dr. SHEPHERD: This is why Susan is always getting stuck in airports, because this is what she does, she’s out there.
The history that we’ve just described to you is so important and parents’ roles have been so important, but I think it’s also, we all know, everyone in this room, that it’s not a perfect world. The way that schools and parents work together can be very positive and very outcomes-oriented and very satisfying, or it can be frustrating and difficult and challenging.
I think if we look back in the 1970s and early 1980s after the IDEA was passed, we kind of ventured into a period where the Special Education profession was growing at a rapid rate, and you know, I was a special educator then, so I probably — I hope I didn’t do this — but I think one of the things that happened in the special education profession is that we were like, “We’re a new profession now,” and we sometimes saw ourselves as the experts and didn’t, I think, acknowledge family voices to the degree that we should have.
Luckily, I think we got a little smarter by the mid-1980s and we said, “Wait a minute, parents are the experts; we need to be listening to parents,” and we kind of got back on track and a lot of the parent organizations and the work that NAPVI has done really have focused on how can we help parents become true partners in the educational planning process? So I think we’ve gotten better at recognizing how parents can be partners, but we’re still on that journey, and that’s why we’re so interested in this whole idea of family leadership.
So here we are today. The work that Susan and I have been doing in this project has really convinced us that we really still need parent leaders; the job is not done just because we have the IDEA, we still have a long way to go. So we really need parent leaders who combine their strengths at the individual advocacy level with a greater level and a greater joining together with other parents. Once you start collaborating with other people, we can really expand our circles of influence and have the power to really bring about change.
We really think it’s important to acknowledge that people do lead at all levels, and we have the parents that we know who are kind of out there, they’re our models of parent leadership, they’re doing things that are very visible in the community, they’re running organizations, they’re leading groups, they may be advocating for legislation, and so on. But probably the bulk of what gets done that we call “leadership” is really that behind the scenes leadership. All of you who are out there also doing things like forming parent support groups, putting bake sales together to support your schools, all the work that’s going out in the hallway right here today, so there’s lots of behind the scenes leadership, and together, these various levels of leadership really combine to make us more powerful as a group.
So one of the things we really hope you’ll do today as you go out through the day and network with other people is to celebrate all the ways in which right now all of you are leading and making a difference.
CHAPTER 6: Personal Perspective
LaVENTURE: I’m going to just share with you from my own personal parent story just as a mother, not as a national advocate, just so that, you know, you can relate to me as a parent. And some of you know me already, so hopefully I won’t bore you, but I see that many of you have never been here before so you haven’t heard my story.
But I did want to tell you that I am a mom, a mother of three children, and I became initially involved as a parent when my youngest son was ten months old. I noticed… well, actually, it just shows again the first lesson as far as parents needing to have confidence in your observations of your children. And he had gone to all his pediatric visits, he was a healthy child healthy birth, and as a mom, I noticed something with his eyes that seemed a little odd to me.
When the light would hit his eye a glare, a cat’s eye reflection, would come back. And so I just kept noticing it, and so as a mom, I brought it to the pediatrician’s attention, and he said, “Yes, there is something not normal here.” He didn’t… you know, he was perplexed; he didn’t know what it was, but he did refer us to — at least he listened to me as a parent; sometimes they don’t listen to the parents — and referred us to an ophthalmologist.
Turns out, he went to the eye doctor. Didn’t go into anesthesia or anything, but just in the regular examining room they dilated the eyes, and the doctor saw what he thought — he’d only seen it in medical books — was a tumor, so a large tumor in his right eye… had evolved in his right eye. And so what I was seeing was the tumor’s white, so I was seeing the reflection of the tumor. It’s a malignant eye cancer, and so it starts in the retina, you know, as cancer cells, and if it goes undetected, it fills in over the eye and destroys the eye, and it’s 100% malignant. If it goes up the optic nerve, it can kill the child.
So we were living in rural New Hampshire, and up in our state, if something’s unusual, they send you to Boston. So we went to Mass Eye and Ear… (laughing) …and we came to Mass Eye and Ear and we had a wonderful doctor, David Walton, and you know, we are fortunate, you know, thank goodness, to be in this area. We have some of the best medicine and medical research here in Boston. We’re very, very fortunate. And the condition that my son has is only 300 cases per year in the U.S. Dr. Walton confirmed that it was just a matter of a few weeks and I could have found him dead in the crib, you know, if I hadn’t brought it to the doctor’s attention.
So this is the first thing about follow your instinct about your child– medically and educationally. It’s important. I mean, you are the one that’s with your child and know your child. Professionals will come in and out of your child’s life and they might be fantastic professionals, but your observations of your child are extremely important. This, of course, is a dramatic example, but it was the beginning. So I started out just as a desperate mom looking for emotional support and wanting to understand, you know, what my son had medically and I wanted to connect with other families.
He had one eye removed immediately, and then his remaining eye had five years of cancer treatment at Mass Eye and Ear, and he had to go under anesthesia, and you know, they treated the cancer, and it was there in the waiting room of Mass Eye and Ear that I met a mom of a deafblind child. And I was like, “Oh, my…” Here I was like, devastated by my son’s visual impairment and it just blew me away. I was like, “Oh, my gosh,” you know, ” her child’s not only blind but he’s hearing impaired.” It just… I just couldn’t… so I said to her, I said — because the moms, you know, they talk in the waiting room, and the dads, while we wait– and she said that… I said, “Well, how do you cope?” And she said… there were two things she said to me: she said, “Other parents, experienced parents “that have been through this have been some of my best supports,” and then she also introduced me to Perkins School for the Blind. She said how important it was for specialized services– the professionals who really know the unique needs of… and are trained in teaching and working with kids with visual impairment or deafblindness.
So that was the beginning, and that’s how I get connected. Turns out that she’s the one who also introduced me to NAPVI, and there was going to be a conference coming up, a national convention, and so I didn’t have any money — well, we had health insurance problems. The same day that my son was diagnosed, the insurance said that he wasn’t covered for his cancer treatment. So you know, I have a family construction business and three children, and it wasn’t like I really had the money to go to a conference. And it was through Perkins — Tom Miller’s program, cosponsored… actually, Helene Powers and I went, and they sponsor our room at the hotel, and then I get sponsorship from a local Lion’s Club for air flight out to the conference, and as long as I promised when I came back I’d give a presentation, so I said, “Okay.” (laughing) Talk about what I learned.
CHAPTER 7: NAPVI
LaVENTURE: I ventured off to my NAPVI conference, and it was just wonderful. It was all these professionals in the field of blindness; people who were authors of books and creators of programs, famous organizations from throughout the country — you know, the American Printing House for the Blind and Hadley School for the Blind — and alongside of them, giving presentations, were parents; parents of kids of all ages who were sharing their stories and their expertise, because they had become experts. It was just an incredible experience for me.
So they had this networking with the eye conditions, so of course, I ran to the table for retinoblastoma and met some families there, you know, from different parts of the country, and I was so excited to meet other families with the same… child with the same eye condition. One of the families, their child was in college at Harvard and had, you know, had had both eyes removed at birth, and so I was able to network with these families, and it turns out there was medical information that I had gained in Boston that they didn’t even know about.
I had been in my early stages of advocacy, and searching for information, I collaborated with the medical professionals. And about the same time that Alex was diagnosed, Dr. Thaddeus Dryja made a huge discovery. He’s a retina specialist and ophthalmologist, but he discovered the retinoblastoma gene, which was the first cancer that was ever related scientifically to the genes. This is before the Human Genome Project, and now we know genes are connected with all of these diseases, but that was the first.
So I wasn’t signing up for the genetic counseling for the family; it was because we wanted to know about the information to share with our families, because it’s all… in the medical research, they knew about it, but it wasn’t in lay terms for the families, all this new genetic information. So he seemed a little perturbed when he met with me in the medical office. He was like, “Oh, why are you here?” And so then I just started to talk about how we’re meeting with families and how important it is for the families to have this information. And so he says, “Just a moment, please,” and so he went back to his office and then came back to me with a folder, and he gave me like about 150 handwritten letters from parents that had written to him… (crying) from around the world who had the same… and he didn’t know what to do with these letters…(crying)… and he just gave them to me.
Dr. SHEPARD: This is why she has to tell her story… (laughing) …because it’s such a powerful story.
LaVENTURE: Well, this is… well, we’re… you know, I’m a pioneer with the social networking. That was the old days — those were handwritten letters. Dr. SHEPARD: That’s right.
LaVENTURE: I brought them back to our core group of families that were meeting in New England, and we furiously wrote everybody back by hand, telling them to join our network.
CHAPTER 8: Leadership as a Journey
LaVENTURE: Anyways, I could carry on with too many stories but I’ll just close with this one.
It ended up that the doctors ended up inviting our family group to come speak to the Harvard Medical Students and MIT Medical Students for classes. Turns out, we collaborated with them and we brought in our kids, you know, and they got to meet real families and real kids with visual conditions, and so we we’ve done that for years, so we’re kind of like on their regular docket every year.
But that’s just one example, just from the perspective. But what Katie said is true. It’s like, by virtue of having a child with a disability, you’re kind of like, automatically a leader. I mean, just in your everyday life, you have to be a voice.
Dr. SHEPHERD: I think we should have a round of applause.
LaVENTURE: Oh! (laughing) (applause)
I’m not going to get into lots of stories, but I do want to say this: that my son, Alex, is a six-foot-three, handsome… tall and handsome, and had a very great life and still is having a great life. But basically, he just graduated from Cornell University, as Dorinda said, this past year — Magna Cum Laude, with honors — in neuroscientific research. And so he actually has a job. He’s doing medical research at Brigham and Women’s right now and studying some diseases of the brain: schizophrenia, tunnel vision, and post-traumatic stress syndrome. He’s really interested in the neurology and he’s pre-med. He wants to do research, but he really wants to make an impact, so it’s exciting. (laughing)
Dr. SHEPHERD: It’s so exciting. The first… now I know why I get goose bumps every time I hear your story. The first time I heard Susan’s story I was with another colleague also named Susan, and we both have daughters about Alex’s age, and so we were saying, “No, no, I think my daughter should meet Alex.” “Oh, no, no, my daughter should meet Alex.” But as you can tell from Susan’s story, it’s such a beautiful story of how leadership is a journey, it’s a process, it’s that old idea of “you were born to be a leader,” I don’t think that’s true. I think you become a leader, and Susan’s a great example of that.
So we have been working together on a project called “Parents as Collaborative Leaders.” Because we’re running out of time now, we’ll just say if you want to hear more, please come to our keynote… or sorry, our workshop at 10:00. But basically, what we’ve been involved in doing is finding parents around the country and we’ve really been seeking out parents who haven’t been doing this work, so we’ve really been looking at parents who are saying, “I’m just learning how to advocate for my kid at the IEP level,” or “I’m just even getting to know other parents who have children with different disabilities.
CHAPTER 9: Parents as Collaborative Leaders
Dr. SHEPHERD: That’s kind of where we started, and then our whole premise has been you become a leader by starting with a passion and saying, “Okay, I need to either “know more about something, or I need to do this thing for my child,” and then you think, “What’s one more step I could take that’s a little outside of my comfort zone?” And that becomes your kind of, zone of leadership development.
Through our project, we’ve also had mentors working with our parent leaders, and Susan has been just a wonderful mentor for the parents she’s worked with. And we’ve been really excited at some of the results of that project. And I guess we’re just going to close out… you had a couple of examples from that, yeah?
LaVENTURE: Right, yeah. Because we want to stay right on time, I’ll talk for one minute, but NAPVI’s… this is how Katie and I met; it’s been a wonderful project. I love working with Katie and the other partners, and we have this whole project which you’ll learn about, but how NAPVI’s been involved is we start off with taking three… identifying three parents within our organization throughout the country, and they enroll in this program, and they attend a Parent Leadership Summit where we give training like a couple days, and then they come up with their own projects and goals for the year of how they want to make an impact.
And so there’s been some exciting things that some of the parents have done. Some have gotten involved in state legislation, some just helping to form a local support group, some parents help just collaborate with agencies in creating parent resource rooms and working with our local agencies and schools for the blind.
From that, we basically replicated the program. NAPVI got a grant from a private foundation for our New York City group, and… to replicate it, but we shaped it for parents of visually impaired children, so we made it specific for blindness and visual impairment as part of it as well, and we have a New York City chapter, and we finished our first round. We have a two year grant, and basically, the parents from different parts of metropolitan New York City, 20 parents from the different boroughs. Most of the families are underserved, underrepresented families come in and we do this training with them about leadership, and they came up with their own goals.
So we’re in our first round right now and it’s very exciting. They’ve been wanting to help impact, you know, advocacy at the local school level. Some of them are networking with the Columbia Hospital in outreach to families, just trying to start a local support group in one of their boroughs, just different things like that. So it’s very exciting, so we’re trying to create more and more leaders to be out there.
Dr. SHEPHERD: And just as a side note, the person who’s organizing the New York City effort along with Susan was one of our original parent leaders in our project, so it’s just kind of built on itself. And when I was there last spring working with you on your first day of kind of your workshop, I was just so struck, because we were in this room, small room with 16 new parents just starting out, and at the end of the day we just went around the circle and said, “What was important to you about today?” And one young mom was a single mom, 19 years old, said, “I’ve never talked to anyone else with a child who’s…” in her case it was deafblindness. And that was… so that was just the first day she’d been in a room with other parents, and it was so powerful for her.
So that’s just our parting thought for you, is the power of everyone in this room, the power of information, the fact that we’re glad that information is more accessible than it was back in the days of handwritten letters and when you had to pay $200 to hear the doctor talk, now you can go on the internet for free.
Dr. SHEPHERD: But the power that we all have together to really change things for our kids and for our families and to make everything that we do just a little bit stronger and better, so thank you very much.
LaVENTURE: Thank you.