Sunday, April 20, 2008

Thoughts on my experience making the film and how children are more accepting of difference and more willing to change that we give them credit for...

Drive a mile down the road from Syracuse University or less than a mile from some not-so-good neighborhoods and you’ll find a well kept secret. There between the economic highs and lows that characterize Syracuse, NY, lies the tiny public school that could. From the West, its brick exterior and slightly grafittied playground reference its City District roots. The Eastern side, however, has a long horizon and steeple-like protrusion which place Edward Smith Elementary school in rural upstate New York.

If you Google “Ed Smith School” you won’t find much. Surprising, since up here, it gets quite the buzz. Ed Smith has been a leader in the inclusion movement for nearly thirty years. My metropolitan roots and college education embarrassed and abandoned me when I first dared ask what this inclusion thing was all about. If it’s such a hot topic with decades of tradition, why in the hell had I never heard of it?

Inclusive Education is a system where all young people learn together in typical schools. A classroom consists of students with or without disabilities and additional professionals to help care for each student’s individual needs. The theory behind inclusive education is better told in Kunc’s The Need to Belong. In principle, inclusion is:

“…the valuing of diversity within the human community. When inclusive education is fully embraced, we abandon the idea that children have to become “normal” in order to contribute to the world… we begin to look beyond typical ways of becoming valued members of the community, and in doing so, begin to realize the achievable goal of providing all children with an authentic sense of belonging (pp.38-39)."

In theory, it seems as though every school could and should have inclusion - but it’s not that simple.

According to the U.S Department of Education, 1975 was the golden year when all young people with disabilities were afforded “free and proper” public education. As of 1990, children under the age of three were included in this IDEA - Individuals with Disabilities Education Act. Ed Smith not only complied with the Act, but began an effort toward full school inclusion only four years later.

Many school systems have also fulfilled the act, implementing separate services to include children with disabilities. Many communities put forth the best possible effort in providing quality education for our nation’s children with disabilities. However, in creating these special services, we are separating our children with special needs.

There’s no denying that children with disabilities have different needs in the classroom, they most certainly do. But does separating the children to provide special services guarantee a better education? The children with disabilities lose interaction with typical peers and are only surrounded by others with disabilities (that are often very different from theirs).

Should a child with autism and another with a physical disability learn together but be separated from typical peers? I doubt separating children with disabilities so they only interact with children “like themselves” is in their best interest. I wondered if the typical children would suffer from this separation as well – so I went to see for myself.

In a post-9/11 world, not just anyone can enter Ed Smith. After clearance from the district, I walked into the main office, signed in and proudly displayed my yellow plastic visitor’s badge. Walking through the halls, I see one woman who knows everybody’s name. It’s a mid-sized K through 6 school but Vice Principal Daryl Hall knows everyone. Her blonde bob and pink tweed suit play up her welcoming smile. She reads the morning announcements, Good Morning Edward Smith School - and we’re off.

Education, she tells me, is one of the most important jobs in the world. And at Ed Smith, the teachers and paraprofessionals take their work very seriously. Their goal is to work together as a teaching unit to provide the best education within the same classroom. Since some students need constant assistance, they require one-on-one aids who must learn to work with the regular teacher. When the teachers master the teamwork they can successfully reach each child’s individual learning needs.

Ed Smith has created a handbook to help educate parents on the means to their success. It says, since students learn at different rates, with a variety of styles, and come from a variety of backgrounds, the more specific the objective is to each child, the greater degree of success for each child.

Ed Smith wants every student to feel important and included, so no one feels left out of the school community. This is all well and good but Ed Smith isn’t all sunshine and roses. The program is not easily done and it’s not perfect. They have been striving towards full inclusion since 1979 and, though they serve as a model, they are still far from the ideal. Inclusion, in theory, means one classroom where children are included throughout the day. Ed Smith has many inclusive classrooms but still has three self-contained special education classrooms. The self-contained kids are mainstreamed (join typical peers in art, gym etc.) for much of the day. This system of self-contained classes as well as “pull-outs” holds it back from its ultimate goal of whole school inclusion.

Pull-outs allow certain children to receive resource attention throughout the day. They are separated for short sessions in whichever services they require – speech, occupational therapy, physical therapy, adaptive physical education, psych etc. With a higher budget Ed Smith could have full inclusion, where services are brought to students in the classroom.

What Ed Smith lacks in progressive inclusion theory, it makes up for in results. Art teacher Mary Lynn Mahan argues that because so many things happen for so many kids, pull-outs don’t carry an awful stigma. The system is not perfect, but the strides they’ve made on that city budget are enough to keep you satisfied – for now.

Inclusion requires what Hall would describe as a willingness to be flexible. Each program is shaped by the specific (and constantly changing) needs of a community, school, staff and students.

A common need for many communities has become servicing children with autism. The CDC calls autism a national health threat, affecting one million U.S. families. One is every 150 kids has autism and around 67 children are diagnosed each day. National Health Threat indeed - autism has no known cause or cure.

Autism is defined as a deficit in three areas of child development – delay of language, impairment of social interaction, and repetitive or odd behaviors. Autism is often referred to as a spectrum disorder because levels of severity vary so dramatically – low-functioning and non-verbal to the more well-known autistic savant.

There’s no denying that the nation’s public schools has a growing need for servicing children with autism. The question is – how exactly are we going to go about educating them? All children on the autism spectrum can’t be put into special education classrooms. The higher-functioning children, who may only present as socially “awkward”, could excel in the regular classroom. And here’s where it gets tricky. Some children with autism present as non-verbal. But just because they can’t speak doesn’t mean they have nothing to say.

Facilitated communication is a process by which non-verbal persons learn to type out their thoughts. If a child with autism can’t verbalize their thoughts, they can sometimes learn to type them - proving they absorb what they learn in the classroom and have thoughts to share. So, where do you draw the line? Who gets to be in the regular classroom and who has to ride the short bus?

Dean Douglas Biklen, of the Syracuse University School of Education, has been an advocate of inclusive education since he participated in the very first special education lawsuits in the early ‘70s. He has had significant experience with autism and works to educate future teachers on how to teach to each child’s individual needs – a process every teacher should be learning. In a regular education class with no special needs children, a teacher should still be tailoring the lesson to each child. Every child – with or without disability – has distinctly different learning needs.

Dean Biklen says that children with autism are often perceived to be the most difficult to include in the regular classroom. This poses a problem as its occurrence has grown exponentially – i.e. National health threat status.

When you hear the word “autism”, odds are you reference a loaded word with heavy and historic stigma. So much so that in some communities, parents debate over keeping their children in the home or sending them to modern versions of institutions. It’s not that these parents don’t care about their children - they care tremendously – they just don’t know of any other options.

When children with disabilities are separated from typical peers they can be given little opportunity too really learn and show intelligence. They miss out on things as innocent as playing with typical peers or eating in the same lunchroom as the “normal” kids their age. Without interaction with people they’d encounter in the “real world”, they grow up viewing themselves as separate from society.

Aren’t we beyond the notion that differences should be tucked away? At Ed Smith, they are - teaching acceptance and tolerance from an early age. Ed Smith kids are re-socialized to celebrate difference and include everyone, regardless of academic or physical ability – or if you’re strange. Beyond science and arithmetic, these kids learn that there are all kinds of people in the world. Vice Principal Hall says, we’ve got to be open to it.

With all these adults – most without disabilities – arguing about what’s best for their children, I wonder what the kids think. Has anyone stopped to ask them?

The fifth grade offered the most profound unsolicited comments: -- I think it teaches you not to judge…you should get to know them before you exclude them. I think it’s cool that everyone is different…not everybody is the same, some people have different talents than other people. I really don’t like to exclude people…you should treat them how you want to be treated. They are fun to play with…and good to make friends – you can learn a lot! -- I heard all this in the lunchroom as well as a cliché, "just because we are different on the outside doesn’t mean we are different on the inside."

Inclusive education is beneficial for all children and every child is educable. Walk around the cafeteria and they’ll be the first to tell you, in words beyond their years, that inclusion works - and separation is unfair and wrong.

Ed Smith kids are used to an inclusive environment. They don’t know otherwise, so the idea of excluding one of their friends because they read slowly or had outbursts they couldn’t control seems absurd. Labeling kids as different doesn’t work here – it doesn’t account for the strengths and weaknesses of all children. Everyone has something to offer.

Newsflash – we aren’t born discriminating - prejudice is taught. If adults unlearn this prejudice and start preaching tolerance, we will have an entire generation of people unafraid of difference.

Ed Smith teaches this new generation. Ms. Balcolm’s fifth grade class is a model for acceptance. They have a true mixture of difference and ability. Daniel O’Connor, a thirteen year old boy with autism, is like any other the other kids. Except for his hard-to-ignore outbursts – they can be pretty loud. His one-to-one aid supports him throughout the day and takes him out of the classroom to calm down if necessary.

Balcolm has learned to work around the noises, and the class adjusts to the point of barely noticing. With his aid’s assistance, Daniel participates in all class activities, and interacts well with his peers – or should I say, friends.

Daniel’s father, Jim O’Connor, is a major advocate for inclusive education. He moved his entire family from Washington State so that Daniel could attend Edward Smith Elementary School. Daniel has experienced so much academic and social growth – the move was definitely worth it. Jim wants to show normal kids that people like Dan, yeah, he behaves strangely but that doesn’t mean he deserves our ridicule. He ought to have our friendship and assistance if he needs it.

If a school doesn’t have inclusion, Jim says, then tell me why yours is better. The answer cannot be that inclusion is too disruptive. Find a way to make it not disruptive. Inclusion, when it’s getting through to the kids, you know you’re doing it right. These kids want to do it, no one tells them to be nice to Dan, they like Dan for who he is. I believe in my heart that Dan, autism or not, will be as least as happy as the rest of us.

June Kimber is a single mom, living in one of those not-so-good neighborhoods I mentioned earlier. I’m embarrassed to say I locked my doors as I drove up innocent sounding Kellogg Street. Her son Cory Denson has autism too, presenting with selective mutism outside of their home. Essentially, this means that Cory speaks, laughs, plays, and shows progress at home but not inside the walls of Ed Smith.

After only observing Cory in school, I assumed he was non-verbal and very low-functioning. I had prepared a series of questions asking June how she communicated with a child who couldn’t speak.

Arriving at the Kimber-Denson’s, I was floored when Cory opened the door for me and ran off chasing his little sister Michaela. Not only had I never seen him run but I had never heard him utter a word - and there he was teasing Michaela incessantly!

Inside the walls of Ed Smith, Cory demonstrates repetitive behavior. He slowly lumbers through the hallways, breaths heavily, and only speaks to repeat what you’ve said. If you ask him “yes or no” he’ll always say yes, copying the first thing you’ve said. It’s hard not to presume that his low-function will cause him to need incredible supervision his entire life. He will need aid but certainly not to the extent I imagined.

June says that Cory was completely non-verbal when he was younger. They never expected him to speak, especially since his progress was slowed by grand mal seizures throughout the day. June confided in me that Michaela was an accident. I’ll call her a blessing - because bringing her into this world opened a new one for Cory.

As Michaela grew, Cory began to show signs of improvement. Michaela spoke her first words and Cory followed with some of his own. They literally grew up together. Cory is seven years older than Michaela and was not potty trained until she led the way.

June has a no-nonsense manner about her. She is this family’s rock - only softened by the few signs of affection that Cory shows. June says that, autism, everyday, is another battle, another struggle. Cory may be nuzzling with affection one moment and without warning a switch will flip and he’ll retreat in angry outbursts and self injurious behavior. Cory is in his own world and his own mother barely cracks the surface.

Cory, twice the size of most boys his age, seems like a gentle giant. His bedroom, however, tells a different story. No glass, no mirrors, and nothing sharp or breakable. He’s already broken the majority of mirrors in the house and once threw himself through a window. No one knows why Cory has these fits or how to stop them. June shakes her head, I just don’t know, I just don’t know. June presses her head against Cory’s and he smiles at her, beaming.

The Cory/Michaela dynamic is a prime example of how a child with a disability benefits from interaction with typical kids. Without the support of Michaela, it’s possible that Cory would never have learned to speak or take steps toward independence. It’s hard to refute that kids with disabilities benefit from inclusion. Does it go the other way?

A main criticism of inclusion comes from parents of typical kids. A mother with two kids in Ed Smith told me that as noble as the school is, she thinks her kids suffer academically. Her kids, of course, wouldn’t tell you that. But in the mother’s eyes, the benefits of social interaction and celebration of difference do not trump the fact that her kids aren’t challenged. Of all the complaints from families of typical kids, this is heard most often.

Dean Biklen, admits both his kids went to Ed Smith and were not always super challenged. Though, looking back, I never felt I was either. I coasted through all my young years, only feeling true challenge in college. This lack of challenge, Biklen argues, is not a function of inclusion but of education in general. Students in the most elite graduate programs will find certain courses don’t challenge them. Having persons with disabilities in the classroom is not the cause of this.

If we can demonstrate that students with the most multiple disabilities could be in regular classes then that will settle the issue, says Biklen. If Syracuse could do it, then presumably anybody could do it, because who are we? We’re just people in a community.

A perfect education is hard to find. Ideally, if teachers work to challenge typical kids as well as those with disabilities, no one should get lost in the mix. When a teacher reaches students as individuals, those who need extra challenge or to learn in a different way, will receive it. In the mean time, Biklen advises parents to speak up. If your kid is not being challenged, let the teacher know, they may not realize the child could handle extra work. With good communication and a consistent dialogue every child can prosper in an inclusive environment.

As one third grader puts it, I’ve learned that some people have different talents than other people. This recognition of difference - or even disability - as a positive asset is a huge step toward redefining disability culture. And where better to start, than with kids.

Introducing difference as an important part of identity helps educate children before popular consensus and exclusion in schools shows them otherwise. After all, isn’t prejudice taught when we insinuate that some kids can’t participate because they are different? It’s hard for kids not to draw conclusions when we train their young minds to work like sponges – absorbing not only what we teach but what we imply.

Daryl Hall, Ed Smith’s Vice Principal, laments that there are still places in the U.S. where there are no children with special needs in an entire school. Parents don’t trust that public education can provide for their child. But every child has that right to an education. Hall says:

“…when we highlight that we have special needs kids in a classroom, people have preconceived notions about what that may mean. When we talk about the gifts and talents of all children and that everybody is good in some things but they’re not so good in other things and invite people in to see actually experience what true learning of all children is all about I think they lose their fears. I think it is based on fears that people are afraid that, “oh my child won’t be able to learn in this environment because they have to teach in another way.” But you know, good instruction is good for all children. So whoever the instructors are in classroom, if they are providing a quality program, everyone will learn. “

Jim O’Connor agrees - a lot of schools are not doing what Ed Smith is doing. I don’t think it’s because they don’t want to. I think it’s because they don’t know, they don’t see the model, they don’t know what can be achieved.

What do I like about my best friends? - a fourth grader ponders while his buddy fiddles with a huge orange hearing aid and jokes with his other friends - the way they treat me. The next lunch table over someone shouts, some schools push people out for being different. One of Daniel’s classmates chimes in, like that wouldn’t be fair and whatever. No - I guess it wouldn’t.

Edward Smith Elementary school of Syracuse, NY is one of the most historically significant K-6 schools in the nation. It was one of the first schools to implement inclusive education and has been a leader in the inclusion movement, embracing children of all abilities for over thirty years. Yet even with that lengthy and impressive history, whole school inclusion is neither popular nor universally well-known.

Inclusion is not the answer for every public, private, and parochial school in the country. Some schools choose a regular and special education setup because they believe it better supports students, not to encourage exclusion. Inclusion would call for a lot of change. For inclusion to work, every school would need an individually tailored plan. This would be modified according to the children’s disabilities, trained professionals, and public funding.

Creating an inclusive program involves modifying the structure of the regular classroom. Classes may necessitate more than one teacher and/or communication technologies to help students with disabilities participate as fully as possible.

This small, under funded elementary school serves as a model for public education. Whether you call it inclusion or not, the program works and the atmosphere fosters acceptance and growth. Whatever it is, it works. Ed Smith kids learn life lessons of respect, cooperation, and justice before other kids learn to multiply four digit numbers. Ed Smith is a beacon of hope for communities looking for change and striving for inclusion – and educates districts that have never even heard of inclusion.

Teachers can create well-designed individualized education programs and each school can tailor programming to suit its needs. The nation’s children have rapidly changing needs - disability is an issue now more than ever. We have to teach the next generation how to deal with it, so that at least in schools, disability can be a non-issue. And eventually we can just call this – education.

Our Words


We've been thinking of doing a blog for awhile now... we'd like to share our thoughts on inclusive education, the growing need for a new educational system to serve both our children with and without autism, and disability culture in general. We'd love to hear from you, whether you agree or disagree!

Andy and I recently completed a 38min documentary on a successful inclusion program in an elementary school in Syracuse, New York. We followed two boys on the autism spectrum in the home and at school to capture real examples of how inclusion benefits ALL CHILDREN.

Elementary Ed tells the story of Daniel and Cory, two 5th graders on the autism spectrum at Ed Smith Elementary in Syracuse, N.Y. The school has been recognized for its acceptance of children with special needs in an 'inclusive' classroom.

Like many other urban public schools, Ed Smith educates children on a small budget. Elementary Ed sheds insight about the challenge of teaching children with autism and provides a window of light into their academic future.

check out:
You Tube Trailer
the film website