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Ken Struve

We’re very happy to be here today with Fran Prezant, who is Director of Evaluation and Research for Abilities!, an organization that serves people with disabilities in Albertson, Long Island. Fran, thank you for talking with us today.

Fran Prezant

Thank you.

Ken

I wanted to start off by talking with you about a program that you started, or had a hand in starting, a few years back. It’s called "Access to Jazz for Children with Physical Disabilities." Let’s jump right in. What was that program trying to do? What need was it trying to address?

Fran

Well, the program was actually the result of a collaborative grant between Friends of the Arts, which is a Long Island arts organization and our organization, Abilities!, and the design of the proposal was to provide access to jazz, history, culture and participation in jazz for students with severe physical disabilities at the Henry Viscardi School.

The Henry Viscardi School is a school that’s affiliated with us, and it’s a state supported special school for children with severe physical and medical disabilities. Sometimes students with severe physical and medical disabilities may be excluded from programs, primarily because people may not understand what their capability is. The grant was funded by the New York State Music Fund in association with Rockefeller Philanthropies and was a two-year program.

Ken

I’m curious, whose idea was it, this grant, and how were you associated with it at the outset? And has that changed?

Fran

We had worked with Friends of the Arts before on a number of projects dealing with access and inclusion for students with disabilities. The previous program we worked on and brought here was a program on Shakespearean theater. And in that program, we brought a group in from New York, and we invited another neighborhood school, children without disabilities, to join a cohort of children with disabilities here, and they were all starting on ground zero. Nobody knew Shakespeare, and so they got into this performing arts kind of program where they were all doing Shakespeare. This came as an outgrowth of the relationship that we had already had with Friends of the Arts, as a means of providing more access to the arts for students with disabilities.

Ken

When you say children with severe physical disabilities, for the benefit of some of our listeners, what exactly does that mean?

Fran

Well, they are children who come to this school primarily because they can’t get an appropriate education in their neighborhood schools, or there’s no access in their neighborhood schools, or the expertise isn’t available in their neighborhood schools to meet their needs. So we do have students with cerebral palsy, we have students with osteogenesis imperfecta. There are students with medical disorders. We have students who are on breathing tubes and feeding tubes and things like that.

Ken

Some of these kids may not be able to use their hands, like we would be able to use our hands? Or they may use wheelchairs that are motorized, that sort of thing?

Fran

Yes, most of the students at the Henry Viscardi School use wheelchairs. We do have some students who are paraplegic or quadriplegic. There are students who are non-verbal. There are students who can move an eyebrow. So there is a wide range, but they are all students who really qualify because they have severe physical or orthopedic or medical disabilities.

Ken

And, in your opinion, what is it about music or making music that’s especially useful in teaching or reaching children with disabilities like these?

Fran

Well, I’m not a musician and I’m not a music expert, I’m a disability advocate and specialist, but I think that everybody should be able to certainly enjoy music. When you think about what it does for you, it changes your mood. You put it on in the morning; it relaxes you. There’s a lot of research that discusses the importance of music, and that it taps into different areas of the brain. It’s a form of expression and a form of creativity, and I think that everybody should be able to access it in some way.

Ken

It seems to me that, among other things, music is a way of playing. When I think of kids, I always think of kids playing. When I think of kids who are quadriplegic, or who may only be able to get around in wheelchairs, it must be difficult to play like other kids do, and so access to this music must be a wonderful resource for them. Is that part of the motivation there?

Fran

Well, it’s interesting that you mentioned play. One of the reasons that we specifically chose jazz is because one of the features of jazz is its improvisational quality. And students who perhaps couldn’t be successful in a symphonic orchestra, because of the precise prescription of what they have to do, could be very successful in jazz because you improvise. You jump in. You put in things that you feel like putting in, whether it’s vocal or instrumental. And so, that was one of the interesting features of using jazz. And we were fortunate to be able to tap into some great teaching artists who know jazz.

Ken

Right, one of the things that struck me was that jazz was as much about the process as the product. And, when you talk about symphonic music not being quite the right medium, due to the emphasis on precision, it may be prohibitive. But with jazz, the process the kids are participating in is a beautiful thing.

Fran

And with these kids, the process was they were learning about jazz, they were composing lyrics. They were playing instruments. And let me just go back to the original purpose of the project, it was to make sure that kids with severe disabilities were able to access music and participate in it. But, a secondary goal of the project was to increase the awareness of teaching artists who were coming in to work with the students. Most teaching artists, unless they have some personal experience, get very little training in how to work with individuals who have significant disabilities.

Likewise, we found in the project, most music educators, people who are trained to be music educators, may take one course that has any content on disability, depending on what state their college program is. In some states, they take no course work at all. So they may not have any preparation to meet the needs of students with significant disabilities who could participate, but sometimes are not included.

Ken

So, a big goal for this program was to build skills among the music teachers and educators who are part of the project. Can you talk a little more about that? What sort of learning curve was involved? And what creative strategies were developed between your team and the teachers over time?

Fran

We had lots of teaching artists that came in throughout the two years, but the two primary teaching artists were Louise Rogers, a jazz vocalist in New York, who has cut several CDs and has her own website, and Kim McCord, who is a professor of music education at Illinois State University. We interviewed both of them when they came in. Neither one of them had lots of prior training working with students with disabilities in their own training programs. We had them come in and observe students and talk to teachers and therapists about the students, about what to expect. And, in that way, we helped sensitize them to our population. That worked very well.

Ken

I remember hearing one of the teaching artists say, I’m paraphrasing now, that at the outset they were afraid to hurt the students, by laying their hands on them. In their minds, the kids were so very fragile that just touching them might be the wrong thing to do.

Fran

Right, I think that that’s not unusual for people who don’t often have contact with someone who has an obvious and severe disability. I think that’s probably a common reaction. And, if nobody tells them, or they don’t have an opportunity to ask questions, people might be afraid.

So what might happen in some public school settings, if the music teacher doesn’t have any experience or background in this, the teacher might be afraid to touch or handle or direct a student with a severe disability. And so what they might do is have somebody helping that student. But sometimes what this turns into is that the aide or person helping is actually doing the task for the student with the disability, and the student with the disability is not really participating. That’s something we were trying to circumvent. We were trying to get that student to participate in whatever ways they could.

Ken

And over time the teaching artists and the music educators became very hands-on.

Fran

Oh, they were very hands on. And in the process we were able to educate a lot of other music educators. The people who were involved on our team, in addition to these teaching artists, were classroom teachers at the Henry Viscardi School, who were very familiar with the students. They are occupational therapists, who work on improving functional daily living skills: they are people who help students improve their ability to use writing instruments or computers or dressing or cooking, or things like that. And a number of us who were disability experts. What we found was when you get all of these people together, who each have their own areas of expertise, you are creating something new. It’s not necessarily new knowledge that didn’t exist before, but you’re joining forces.

For instance, an occupational therapist in the room might be observing and say that a child can’t play an instrument in a certain way, but if you reposition his body and move him into a different position, he would be able to play it. That kind of insight came from the therapist who specializes in that. I wouldn’t have known that, or the music educator wouldn’t have necessarily known that either.

Ken

Right, and so there may be ways for a child that only has the use of one hand, to clap along with other kids in the room, through these adaptive strategies.

Fran

Well, it’s interesting you mentioned that specific piece, because what we found is that if you have an open mind and you have the right people there, you can come up with some very creative solutions that are not necessarily complex or expensive.

Some of those solutions may even have to do with the way you give a direction. We typically might say to a child, clap your hands or stamp your feet. Can you say that to a kid who has no hands or who can’t use their feet? So, one of the directions that Louise Rogers, the jazz vocalist, began using with the students was to move to the beat. Just by changing her verbal direction, suddenly kids who couldn’t clap or couldn’t stamp, could participate, by moving their body in a different way.

Ken

That’s an excellent example of a low tech, low cost solution.

Fran

It was very low tech and very easy. And, if everybody was armed with that information, it would include a lot more students.

Ken

It sounds like the occupational therapists were pretty important in the whole development of strategies. I know you have described a little bit about what the OT’s do. What do you think the occupational therapists learned that they’re putting into their work from the music educators? Did the learning run both ways?

Fran

We had several occupational therapists that came in with the students they were working with. But, one of them had some prior experience with music because her young adult children were musicians. I can give you an example of a tool that was created because of this. A student who did not have enough manual dexterity to play a chord on a piano, which you might need the use of three fingers to do, wanted to play the piano. Because the student could hold something, they basically created a claw-like device, it was a grip that you hold onto and extending from the grip were three straws that were taped on in a certain way, so that if the student held the device and pushed down on it, it could push three keys down.

Ken

The shape of a rake?

Fran

Right. So this student, who cannot hold down three keys with their hand because of their manual limitations, was suddenly able to use this device to play a chord. Again, nothing highly technological, very simple, we have images of it if anybody’s interested in seeing that. But suddenly, this child could play a chord.

It’s not only occupational therapists. We had speech and language pathologists involved because we had students who are non-verbal and cannot speak. And they use augmentative communication, computerized devices that are programmed to speak for them. They program what they want to say, and it’s the device that speaks. So we had kids who were creating lyrics to songs using a computerized device, even though they couldn’t speak.

Ken

That’s excellent.

Fran

Yes. And we included them in songs.

Ken

I was just going to ask about some of the higher technology. I saw that video conferencing was an important component to this program, to the success of it. Could you explain why that is important? And why is the internet, on the whole, important to the program’s success.

Fran

When we realized how important this knowledge could be to future educators, what we did was broadcast some of the sessions back to Dr. Kim McCord, a teaching artist and professor at Illinois State University. She teaches classes for future music educators. We took some of our sessions and broadcast to her students at Illinois State University who were able to watch what was going on here.

It was a great learning experience for those future teachers because they were watching our sessions and telling our students, "could you reposition yourself this way", or "what happens if you do this", or "can you try to do this with your breathing". It was a wonderful. It was a two-way interaction; we had students here talking to college students. So it was kind of a live laboratory setting, virtually. We’ve done that several times. In fact, just last week, we basically delivered a lecture to those same college students.

Ken

That’s wonderful. Ten years ago music teachers were getting just one course – or no course – now they can log on and participate in an interactive way with a program like this. And learn by interacting on the internet.

Fran

Definitely. Another thing that made this so special is Dr. McCord teaches one course a year in which there are pairs of students, each pair consists of one music education student and the other is a student preparing to be a special education teacher, a wonderful idea. We had these pairs of students who are communicating with each other about their knowledge, but also tapping into basically this live laboratory and looking at what’s going on with real kids.

Ken

All of this effort, whether it’s at the university level or here in the classrooms with the music teachers, seems to support this idea of inclusion. I wonder if that was always the intention, and if you think you got to that goal.

Fran

First of all, the intention was definitely to make sure that the kids were able to participate. Ideally, if a child is in a regular public school and has a significant disability, the intention is to ensure efforts are made so that student can be involved. Maybe that means more of the experts who interact with that student come together. The place where they could come together is at the IEP meeting, the Individualized Educational Plan meeting, where you determine what the goals are for the student for the next year.

But, I think what often happens is that not all of the players are at the table at the same time. So, we’re missing opportunities. If you could get the music educator and classroom teacher and special educator and occupational therapist to all share their different insights, which really is what happens at an IEP meeting, I think more students would be able to participate. But, it doesn’t always include all the players.

Ken

If people want to learn more about this program, is there a resource that they can tap into to see a fuller version?

Fran

Yes. They could visit the Abilities! website (www.abilitiesonline.org). Under "programs" you can look up research and find information on the jazz program, or you can email me at fprezant@abilitiesonline.org .

Ken

You come at this topic of inclusion and disabilities from many perspectives. I wanted to take the opportunity today to also talk with you about your life as an author. You’ve authored two books – two you’ll admit to – or co-authored these books. The last one, Married with Special Needs Children, was published about a year ago. What was it that motivated you to co-author this book, and aren’t there already resources available on the subject?

Fran

Well, it’s interesting. I’ve co-authored with the same person, who is Dr. Laura Marshak from Indiana University of Pennsylvania. The first book was Disability and the Family Life Cycle and this book is Married with Special Needs Children. We were both faculty members in the university, Laura was in rehab counseling and I was in special education and speech and language pathology. We both had opportunities to work with many families. In addition to certainly our own personal experiences, we had the opportunity to work with many families who had children with disabilities. My particular experience was as a supervisor in a clinic. Everyday I’d walk in and there would be five parents talking about the issues they had with their children and didn’t know what to do about them. I had a lot of information on special education rights and wrote a proposal to the Developmental Disabilities Counsel in the state, that was Pennsylvania. The counsel funded a grant so I could start a parent training and information project and I began it. Long story short, I started with ten families and ended up with about 1,200 families by the time I left 10 years later.

Ken

One thousand two hundred families, that’s extraordinary.

Fran

And this was in pretty rural Pennsylvania. The goal was to provide information to parents on what you need to know about special education, what to take to your IEP meeting, questions to ask, resources, etc. But, then the conversations altered a little bit. People started talking about more than educational issues. They were talking about their child’s lack of friends or social needs of their children. Then, every once in awhile I’d hear something about their relationships with their spouses, maybe how their husband never goes to the school meetings and they’re always responsible for it. About the same time, Dr. Marshak and I were talking with Woodbine House, a publishing company, about a book project we had. After learning about our credentials, they asked us if we would write this book. When we began looking around, there were no books that addressed the marital issues.

Ken

No books?

Fran

None, you could walk into any book store and look at the hundreds of books on marriages, which is certainly a comment about all marriages. And we know that the divorce rate now is like one out of two.

Ken

I think so, yes.

Fran

You could find a lot of books on parenting for parents of children with disabilities, how do you parent your child, and what do you need to know about education. But nobody ever addressed the marriage issue at all, as if it wasn’t different, and it is.

Ken

The divorce rates are high for all of us, but I imagine that the stresses that families with special needs children undergo are different and extraordinary. For those of us that are new to the topic, can you describe some of the factors that can make staying together that much harder.

Fran

There is a lot of stress, I don’t know if there are any good hard figures, but the divorce rate is assumedly higher for parents who have children with disabilities. When you think of what parents go through, let’s take the instance of parents who find out that they have a child with an obvious disability at birth, a child who may have paralysis, a child who may end up being non-verbal, as well. Think about what that parent goes through.

Most people when they are anticipating the birth of a child think about what they’re going to name the child and where the child’s going to go to school, and the brothers and sisters, and things like that. They don’t often think about the possibility of having a child with a disability. So, just the initial shock that some families, most families, go through when this happens is a huge stress. There is guilt associated with it. Did I do something that caused that to happen? There is denial on the part of some parents. And then, getting into all the issues in terms of parenting a child with a disability, it takes an inordinate amount of time. It can be very fatiguing, very stressful. It could tax your financial resources. And that still doesn’t say anything about the quality of the relationship between two people.

Ken

They must be very tired.

Fran

They are very tired.

Ken

City Access New York works quite a bit with families whose children have autism and I was thinking about them as I came to talk with you today. Their behaviors can create great stress in the home and in public. Does your book address the needs of parents and the health of their relationship in situations like that, or is that too fine-grained an issue to take up?

Fran

No, the book really talks about, in addition to some of the stresses I just mentioned, the fact that couples are made up by individuals. Individuals have their own specific characteristics and each individual in the partnership has to deal with specific tasks before they can work on tasks as a couple. Different parents have different ways of reacting. But it is a major issue. If you have a child who has behaviors that other people might not understand it can be very stressful. It becomes more stressful if the mother and the father have different attitudes about that.

Ken

All parents have differences about what’s the "right way to raise a kid". I think that must throw a very bright light on those differences sometimes.

Fran

Definitely, I think the key word here is amplification. We talk about that a lot. Parents of children with disabilities have many similar parenting issues that other parents have, but everything is amplified, the concerns that people have and the differences between the mother and father. I have a quote from a mother who addresses this issue of differences between parents, which are sometimes not deleterious. They could be if you let them get to you. But if you let your differences complement each other, then that’s very helpful. If you don’t, then you run into problems.

This mother said about her husband, "We don’t see eye to eye on a lot of things. When I grieved for a very long time about our daughter’s disability, my husband, who grew up on a farm in Kansas, just shrugged his shoulders and said it changed nothing. He just loved her and did whatever he had to do for her. Only when I get him all liquored up can I get deep emotions from him, but even then, he is very calm and at peace with her condition. I’ve always commented that farmers take everything in stride, a tornado, hail, drought, they don’t get upset, and they just go back to work. That seems to be his motto in life. I guess this is good, because I am a hot tempered Irish woman, who emotes, cries, laughs, gets angry, yells and hugs with great abandon. Maybe I did the feeling for both of us while he held down the fort."

Ken

A division of labor, you’re talking about.

Fran

Right, a division of labor, which was not intended, but that’s what happened. Historically, a lot of the medical literature years ago would say, if you are parents of a kid with a disability, you’re doomed, your family is going to be dysfunctional just by the nature of the fact that you have a kid with a disability. We interviewed hundreds of families, so it’s really based on real people’s lives, and what we found was incredible resilience among couples.

We found, that despite the fact there were overwhelming stresses, couples who bonded together, whose differences complemented each other in many situations, and who were very strong and resilient. I wanted to make that point because that’s not historically what the literature said. That was one of the reasons we really wanted to write this book. There were many couples who were able to stay together. And some of them had to do incredible things.

There was one family in Florida who had to live separately because living together their insurance would not cover their daughter’s medical costs, and their daughter had a very severe disability and needed lots of operations. They didn’t have the right insurance. They found that if they separated, one of them could file for state support because she then had no income. And, that was able to pay for the child’s services. People have done some remarkable things in order to support their child and keep the relationship going.

Ken

I know we’re about out of time, Fran. I wanted to ask you just a couple more questions before we go. In a recent Museum Access Consortium panel, we had parents of kids with disabilities talk about, among other things, the extraordinary planning that went into every detail, every aspect of their lives. They talked about the planning that needed to be done to do what we take for granted. Could you describe what that means and what impact that can have on the day to day interactions between couples?

Fran

Again, it would certainly depend on the disability. There are many children with disabilities that don’t require lots and lots of additional time and planning. But for a child who has a very severe, significant disability, take maybe a child who is paralyzed and non-verbal and has to rely on somebody else for all of their physical care. From the moment that family gets up in the morning until the moment that they go to sleep, and even beyond that, they have to be concerned about who is attending to the child.

Maybe the child can’t be left alone at any time, even when they reach adolescence, when all their buddies are going outside. The parents, the mother and the father may have difficulty getting away or getting any respite at all, particularly if they don’t have a good support network. That creates lots of stress on families, if mothers and fathers don’t have time to get off by themselves, time for romance, time for the things that couples do. It can become very difficult if you’re attending every moment of the day to your child’s needs. If the child’s needs basically consume the relationship so that there is no room left for a relationship other than meeting the needs of the child, it can be overwhelming. That is what can destroy your relationship.

Ken

I imagine that there are parents who would feel very guilty about doing anything other than attending to their children, when it sounds like that’s exactly what they need to do.

Fran

Right, because that’s what you’re supposed to do. You’re supposed to take care of your child before yourself. But there’s a segment in the book that I call "don’t forget to breathe" and I say, find your oxygen mask. The analogy came to me when I was on an airplane and the stewardess is giving information on if there’s a problem with the oxygen. The oxygen mask comes down and you’re with your child, you use the oxygen mask first. And I remember thinking, well that’s weird, why wouldn’t you naturally just give the oxygen to your child first. And the reason is, if you’re worthless, how are you going to help your child or the rest of your family?

So, part of it as an individual is, you really need to make sure you have an oxygen mask. You save a corner of life for yourself, but also as a couple. If you want to maintain yourself as a couple, you have to save time for yourself that is not consumed just by your child. It is definitely challenging.

Ken

If listeners would like to read more of your book, Married with Special Needs Children, where can they get that?

Fran

Directly from Woodbine House, Borders, Barnes and Noble, and actually there is a website, it’s www.marriedwithspecialchildren.com that you can find out more information about the book.

Ken

Thank you so much, Fran, it’s been marvelous talking with you.

Fran

Thank you.