The Meaning of Inclusion, Based Upon My Son with Down Syndrome

Are special needs children being placed into regular education classrooms without taking into account their individual needs, learning styles, and abilities? Are regular classroom teachers offered adequate and focused training to accommodate the diverse needs of student’s with learning disabilities? Are classroom load factors considered when placing a special education student in the regular education classroom? Is there more time allowed to meet increased planning and collaboration demands placed on that regular education teacher? Does the classroom teacher receive reliable support within the classroom to address the special education student’s IEP goals? How is inclusion defined? Is the average teacher, parent, or school in agreement with one definition of inclusion? These questions are at the core of the debate between many regular and special education teachers and families of students with special needs today. From my own experience of raising my son Brian, who has Down syndrome, I would have to say that many of these questions would receive a loud “no!” from me.

From the time Brian was three years old I have had to advocate for my son to receive an inclusive classroom experience, meaning that I wanted him taught with his peers along with the proper supports to help him be successful in that setting. Although P.L. 101-476, titled IDEA, or the Individuals with Disabilities Act, entitles students with disabilities to be educated with nondisabled children to the “maximum extent possible” my experience has been that the school’s interpretation of this law can differ widely from the families. In the article, “Inclusion is Happening in the Classroom” inclusion is defined as, “the placement of children with disabilities in a regular education classroom with children who do not have disabilities.” The authors notes that, “special education was never meant to be defined as a place, but rather was intended to be specifically designed instruction provided at no cost to the parent.” Over the years Brian’s abilities and needs have changed but without my advocating for Brian’s rights to taught in the least restrictive environment, I’d be fearful to guess what his social, emotional, and speech capabilities would be today had he been placed in a special class, or school, or residential institution. Throughout my writing I will analyze my personal experience and advocacy work with Brian and share with you how inclusion has changed meaning for me over time and why.

When I think about inclusion for my son Brian, it brings about many thoughts and feelings. Today it means that he has friends, buddies who he can hang out with and relate to. It means that on a daily basis at school he has someone to eat lunch with and play with at recess. It means that someday, if Brian is walking to work, a friend from school will pull over and stop and ask Brian if he needs a ride, because he knows Brian and is not afraid of him. I know that these gifts from inclusion will not happen over night, I believe it takes a lot of time and effort by a great number of people for these gifts to occur. Most importantly I believe it comes from Brian, his desire to be part of a community, his determination to communicate and work to the best of his abilities at all times.

I remember when he was a baby he wanted to move around in his world so badly. In his own way he learned to walk, he would push up on his hands and legs to get around quickly. Since his trunk muscle’s could not hold him upright yet, he created a version that worked for him and excelled at it. This crab walk served him well for almost two years till he graduated to an upright walking position. Brian also struggled with verbal communication, so much so that his speech could not be understood. Naturally he would get frustrated with me and I with him. Together we came up with a system that worked. I put up picture/word cards with velcro attached to the back all over the house so that he could bring me the card and get his needs met, usually a cookie.

The earliest idea for inclusion occurred when Brian was turning two, I wanted him to play and interact with children his own age. His wonderful early intervention teacher, Maggie Miller, suggested that we start with two morning sessions a week at our local daycare, Masonic Child Development Center. Brian really enjoyed being with the other children and we found that his developmental skills were mostly age appropriate, except for his spoken language. It was then that we first introduced sign language to Brian and all of his classmates. Like most skills early on, with repetition and practice Brian learned. All of the children at the preschool were signing and saying more, please, and thank you during snack, circle time, etc. A lot of Brian’s communication frustration was lifted and he really enjoyed his new ability to express himself to his new friends and at home.

It was during my research this month that I read a great article called, “Seeing Language: The Effect Over Time of Sign Language on Vocabulary Development in Early Childhood Education” which has shown that statistically significant vocabulary gains have been made with children who used sign language in preschool and that these gains remain with them over time. “Including sign language in the prekindergarten curriculum employs an additional sensory channel. The kinetic sense that is included augments the usual oral aural sensory channels. Using sign language literally allows a child to feel language” (Daniels, p.4.) I know for my son, sign language offered us a communicative tool and allowed him to strengthen his natural way of learning language at that age through his spatial and bodily- kinesthetic intelligences.

So much is written about the importance of social competence for children with disabilities. I truly believed that by immersing Brian with his typical peers, being exposed to language and play skills that were age appropriate along with be supported by properly trained educators was all that Brian needed to succeed socially and emotionally in those early preschool years. I feel that if Brian was segregated from his typical peers and role models at school and in his community he would be sent the message that he is different and cannot function in everyday society. This segregation could have promoted a feeling of isolation for Brian and encouraged his dependence on adults. I still feel today that teaching Brian in a special class or school would deny him valuable learning from socializing experiences. So as my ideals formed for Brian to be included as part of his school community I realized that much of the way schools have been doing things would have to change. I have to agree with author, Margret Winzer, when she states, “Lacking adaptions, inclusion becomes only a matter of where students sit, not where they are provided optimal opportunities to learn” (7).

I was very pessimistic of the special need’s program that the local school system wanted Brian to attend once he turned three years old. I went and viewed the elementary school-based program and was not impressed. All of the children had some type of special need, but that was not the obvious problem. The problem was not even how well behaved or quiet they were, well, maybe it was. I had trouble understanding how Brian was going to learn to talk if all of his role models were nonverbal also. Or how Brian was going to learn to share if all the other children were solitary players.

I decided to challenge the school placement and requested that they leave Brian in his current preschool with the proper supports. I wanted him to receive speech therapy, physical therapy, and occupational therapy right there. I would ask them, “Where is there a better place to teach him to talk except where language is all around him?” This would also go for bike riding, swinging and sliding on the playground, using play doe and other games and toys. Why would you need to place him in a solitary room to play with an adult one-on- one with these toys and then call it therapy? Why not use the most natural and appropriate setting, isn’t that what the special education laws intended?

As I researched articles on inclusion this month I realized that the definitions of inclusion vary as much as the way different schools approach inclusion. Some definitions are simple and to the point like: “..the practice of including all special needs students in the regular classroom” by Pennell, D and Sprague in their article called “The Power of Partners Preparing Preservice Teachers for Inclusion.” I found that this article addressed a reoccurring theme in the inclusion debate. Are regular classroom teachers offered adequate and focused training to accommodate the diverse needs of student’s with learning disabilities? The results of this pilot program to help novice teachers feel prepared to teach in an inclusive regular education setting were very positive. The authors found that when schools and universities work together in a concerted effort to prepare teachers for the reality of today’s teaching the results are teachers who believe in and are prepared to work in inclusive settings. Research also shows that so much of the classroom teachers attitude will affect the views of those children who are not disabled. So I need to ask, but what about teachers who are already licensed and working, how do we prepare them? As a parent and as a preservice teacher I feel that this preparation is crucial. I can reflect back now and see that the Connecticut special educators had never been properly trained on how to offer an inclusive program and were offering Brian exactly what they been trained to do, specialized instruction in a separate setting at no cost to the parent.

Because I had knowledge regarding the special education laws, I advocated for Brian’s right to stay in his preschool setting and won. Brian would continue to enjoy his first taste of full inclusion, being part of a community of nondisabled peers, until he was five years old. I can now appreciate how this experience prepared him and me for the many new challenges and transitions we’d have to face together. When he did transition to the elementary school, I believed he was ready socially and emotionally for the change. The school had rebuilt their special education program to include a one to four ratio of special need students to regular education students and renamed it, The Panda Program. I was excited for Brian to be in regular school and felt that this change would help prepare him for his next big transition: to kindergarten the following year.

I realize today that in many instances I wear blinders when it comes to perceiving Brian as other people do. As I write this paper and read the research on what makes inclusion difficult, I find that Brian could be considered to have multiple and severe disabilities. To me he is just my little boy and I want to do everything in my power to help him succeed in this world. When Brian was five he using some sign language to help him communicate but his small hands had a hard time making the shapes necessary and he would get very frustrated. He would resort to biting, or throwing tantrums, causing major disruptions at home and in school. So in preparation for the Panda program, Brian had an augmentative speech evaluation, a way to look at alternative methods for Brian to be able to communicate. This evaluation enabled us to take his picture velcro system one step further, by putting language to it on a talking device called a “Cheap Talk Eight.” Brian really blossomed when he was given a new way to express his wants and needs. His behaviors became manageable and he enjoyed school and home life more.

It was that summer that we decided to make to move from Connecticut to Chester, VT. I knew that this transition would be hard on Brian, but I felt the timing was good for him and us as a family. Brian would be starting kindergarten and I was due to have my third child that September. I contacted the new school and found that there was no question Brian would be included in the regular education classroom. I recalled from taking a 12 week course sponsored by the Connecticut State Department of Education many years ago, that Vermont was the only state in the nation which received an “A” for classroom inclusion. It was a few months into the school year when I realized why Vermont received an “A.” Because Vermont is so rural, most of the elementary schools are naturally inclusive because there are not enough special needs students to create their own classroom. Unfortunately, this is not the case in Connecticut and many parents who want full inclusion for their children have to battle the old system of classifying special education students together, so services can be provided for “convenience sake.”

Although Brian started in regular kindergarten at six years old and had a great teacher and aide, our struggle towards full inclusion had only just begun. Brian had a lot of “high” needs. The largest and hardest to overcome was his speech delay. Brian could understand at a very age appropriate level but could respond at a very minimal level. He would struggle for only so long to get his point across and express his thought, but eventually he’d give up and I’d lose a little piece of my boy. Many of his classmates treated his talking device as a toy and we decided to stop using it, hoping that Brian’s one to two word utterances would continue to form. Our focus for speech geared more towards building his vocabulary and articulation along with using some of the simple signs he was familiar with.

Brian moved up to the first/second grade classroom the next year and we were again blessed with a great teacher and support team who had a lot of patience and love. They also had a lot of creative ideas for including him and using his best talents. Brian is a creature of routine and works best with no surprises. But even though we all did our best this year we found that it wasn’t enough for Brian. As his peers progressed academically, he was not. Brian was very frustrated with school, he didn’t want to go. Again he started to act out in school in ways that were not socially acceptable. Brian just did not have the tools he needed to express himself verbally and was so frustrated that he did what he knew best to get his needs met, he became disruptive. The expectations placed on him, being in the regular classroom, became to much. We found that the regular education teacher and aide did not have time to develop and implement a curriculum that would meet his varying and complex needs. This was when I started to question my ideas and beliefs about inclusion to date. Did I just want my son placed in the classroom based on geographics, his age fit the other children, or did I want more and what did that mean to me. I knew in my heart that when he was little he needed to be with his friends and learn to play with them, and to grow emotionally and socially with them. But what about now, was the gap growing too wide?

My idea of full inclusion, having Brian taught in the general education classroom for the full day with support services brought to him instead of removing him to a segregated setting were being challenged and refined. Answers came to me in two ways. One was meeting a behavioral specialist when I attended a workshop at a convention in Burlington. Listening to this specialist, Craig Barringer, talk that day I realized that Brian was struggling with autonomy and was crying out for help through his behaviors. As a team we decided to call the Vermont I-Team, a group that “assists local teams of families and educators in the delivery of quality educational services to students with intensive educational needs through technical assistance, professional development, and family support.” Luckily, Craig Barringer was the Educational Consultant for the Southeast Region and came to Chester Andover Elementary School to consult. The second answer came out of a recommendation during Brian’s tri-annual evaluation to use a process called COACH, Choosing outcomes and accommodations for children with special needs, during his next IEP meeting. So here we are, Brian is in second grade and he hates school, what can we do? We can develop and use these two new tools at out disposal. During our first meeting with Craig, we (meaning his whole team, myself, his aide, the regular education classroom teacher, his special education teacher, the speech therapist, and the occupational therapist) charted out Brian’s normal school day and looked at a few major components. The first was curriculum and the question of whether it was appropriate? The second was language skills needed and are his appropriate? The third was what is the social make up of the group and is it appropriate? I have always been an active participant in all of Brian’s IEPs and planning sessions, but had never approached one quite this way, without all of the mumbo jumbo of an IEP, with everyone being very open, direct, and honest about how they perceived Brian. I quickly learned that my idea of inclusion would need to change for Brian’s sake. I clearly saw that Brian’s negative behavior in school and at home stemmed from us wanting him to conform to our way of doing things instead of allowing Brian to form his own identity and take some control of his environment. If we wanted his needs to come before ours we’d have to try to stop controlling his every move. Not only that, but first and foremost we needed to look at his comprehension the why involved in the tasks we were asking him to do.

I enjoyed the article, “Inclusion: Empirical Guidelines and Unanswered Questions” because I felt like many of my son’s issues are addressed in this article in a positive manner. Barbara Wilson, the author notes, “In a study parents of children with severe disabilities rated friendship/social relationship development a higher priority for their children than either functional life skills or academic skill development.” I happen to agree with this, if Brian doesn’t develop social competence none of the academics in the world will matter. Just like a genius who doesn’t go far because he lacks interpersonal skills. For most children the process of making and maintaining friendships appears automatic, this is not so for my son. Similarly most typically developing children eventually start to ask why questions. Research shows that it is through this natural tendency to question the world around them that most children learn to read and write, along with many of the other skills they’ll need later in life. For Brian these natural occurrence didn’t seem to happen or we missed it somehow, or his lack of communicate skills masked it. As a team we needed to find out what Brian wanted to learn and what would motivate him to learn it along with how he could develop friendships and maintain those friendships.

As we outlined his day we realized that Brian enjoyed full inclusion only with tasks that he comprehended and liked. At 8:00 a.m. each day, the class would start with drawing, this received an OK on all three of the points, also one day a week Brian had music class, this also received an OK. I remembered that when he was little, I could make up a funny song and eventually he’d join in the game and do the task at hand, such as brushing his teeth, cleaning up, getting dressed, or going outside. To an extent this would still work, he loves all music, so we noted this as a motivator for Brian. What we quickly found out was that the rest of his day and week needed a lot of work. When the classroom teacher would speak and give instructions to the class Brian would go off into space, you could say he was there and included, but certainly not engaged in the discussion. So we began as a group to ask how does Brian ask why? How can his voice be heard? What good is including him in the classroom space if he is not a “part of?” These questions were hard, I started to feel hurt, other members of the team started to feel hurt, but we tried to keep the focus on how we could now do it differently. What could we do to help this nine-year old boy, with limited speech, be and feel a real part of school and the classroom? How can he gain the ability to ask why questions and have a sense of purpose in his life? What support does the regular education classroom teacher need to design and implement educational experiences that could be used with Brian and all the students?

Our time together as a group was quickly running out, time for collaboration is the one thing that there is never enough of when we’d meet as a team. Together we created a list of “must have” for each part of Brian’s program and day. The list looks simply, but each point is specific to Brian, who he is and how he learns best. First, is that the activity must be hands on, next is that Brian’s role must be defined. Consist to knowing Brian is to consider if he is feeling physically well that day, are we following a routine and is the information being presented in context. We also decided as a team that Brian responds well to information presented via the computer so another must have would be high tech. Two other points we noted and included are that Brian is a social creature so his learning should include a social aspect as well as not being too distracting.

During the same time period we attended a three day training sponsored by the University of Vermont for using the COACH process to create Individualized Education Plans. As a team we developed a five year goal plan and now needed to see how we could fit the goals into our new outline of how Brian’s school day could be. The five family centered goals are for Brian to be fully independent at the use of the computer, his self-care, speech (receptive and expressive), a sport or social club, and comprehension of self, i.e. address, phone number, birthday, grade, etc. During our afternoon meeting with Craig the energy was flowing and an idea emerged on how all members of Brian’s team could partake in devising a Life Skills program that would incorporate curricula in a meaningful way based on Brian’s particular learning styles. First, what is a motivator for Brian? Food, was one thought we came up with. I’ll use that as an example of how we brain stormed ideas that day. Brian enjoys food, so each team member thought they could participate in the planning process for Brian to organize, buy, create, and serve a snack to his classmates. This would allow him to use the computer as a tool (addressing goal one of five), he could list what he needed to buy, or problem solve ideas, or type up recipes, or even create a cook book etc. To address our goal of speech we’d ask Brian to communicate with his classmates in a variety of ways. Brian could practice his sentences in speech and then apply them in the classroom seeking out “real” answers to what his friends would like for their snack. Later he would have to count the orders, go to the store, ask questions, pay for items, and so on. The main point we found is that he would understand the why, so his motivation and comprehension are present. O.T. and P.T. could both jump into the process and teach Brian the sub skills he’ll need to be successful in a manner that makes sense to him. Brian’s aide would not have to hand out ditto sheets of math, that Brian might refuse to do, instead she would be able to help him make sense of math through real life context. His speech pathologist will be able to have Brian spend lots of time on articulation because Brian would want his friends to understand what he is asking them and would not be so easily frustrated by the repetition of these tasks. Last but not least, the special educator could help Brian follow directions, read and understand them, basically learn how to problem solve in a meaningful way. Brian would want the end result, the ability to offer a snack to his classmates and teachers and also be able to sit down and enjoy it with them. Brian is a social being and this was one idea that would strengthen his interpersonal intelligence along with addressing his five family centered goals.

This and many more ideas took shape over a period of time during the end of his second year in a multi-age first/second grade classroom so we decided to have him repeat second grade and started the following school year with a functional IEP plan and a classroom teacher familiar with Brian. Brian was like a whole different boy, he couldn’t wait for school the next day and was really having fun playing with his peers. My dream of him eating lunch with friends and playing in a group for recess was coming true. This inclusion was not forced, it happened naturally over time, as Brian was able to share his strengths in the classroom. His sensitive nature came out, he was a good friend to anyone who got hurt or felt sad. He loved to sing and be silly and his friends enjoyed his sense of humor. All of a sudden it seemed like Brian took to school like a fish to water, but the team and myself knew how much work it really took, and were constantly surprised and amazed at the successes for Brian and his peers. Brian grew up that year and was ready socially and emotionally to move into the third/fourth grade classroom the following year.

Some of the activities that occurred over the next two years in school for Brian were his fruit smoothie sales and birthday basket job. Brian and his aide learned to make great fruit smoothies, they sold fruit smoothie’s to the third/fourth grade classrooms and staff throughout the building. Along with boosting his self esteem this activity taught him math, reading, shopping, following directions and speech in a fun, engaging way. An unexpected benefit for Brian was being invited on play dates and birthday parties with friends. I had hoped that as Brian grew in social competence and developed a sense of autonomy that true friendships would occur. I believe that all our hard work and planning paid off as I witnessed these gifts first hand. I feel that the one important goal we work on and will continue to work on is Brian’s social skills. This skill will continue to lead to his acceptance by his peers but without social competence I have a son with special needs who has no friends. I can handle his special needs, but I cannot cure his loneliness.

I can appreciate the fact that as I became willing to let go of my old ideas of what inclusion means I became open to trying something new. But what I feel is more important is the fact that the school also became willing to try something new. In the article, “Flawed Assumptions,” Joanne Ytavin (1995) feels that when professionals and parents look at the negative aspect of inclusion they assume that a regular classroom operates from the old paradigm of schools, “one size fits all” model of instruction. Yet, for thirty years or more, classrooms have been evolving into far more varied and flexible structures. “Folding a child with special needs into this mix is hardly the daunting challenge it may have been in the days of relatively homogeneous student populations” (Ytavin, 1995, p.1). For Brian our school focus evolved into one of teaching life skills and including his peers as much as possible. I’ll always remember the day Brian had his first sleep over and what a great time the boys had together. I believe that this success was a direct result of his new curriculum at school.

Through school and home activities Brian has been given the opportunity to develop and use many of the skills I hoped he’d be independent in. His confidence in speech and language, computer usage, and in himself as a learner are all gifts of the unique inclusive program we created for Brian at Chester Andover Elementary. Is this true inclusion? That depends on whose perception. Was Brian in the classroom all day, no. Were all of his supports presented to him in the classroom, like when he was little, no. Do I consider this inclusion, yes. For my son Brian, I think we have the best of both worlds. Brian spends the morning in the classroom, setting his schedule for the day, just like everyone else. He has a job, he reads the hot lunch menu and counts who is having what. His friends create books for Brian and read to him or he’ll share a story he has written on his Pixwriter with his friend or classroom. As the periods break up into more defined curricula work Brian will work on his individualized project. For example last year they were studying maps around the world, well, that was way to broad of a subject for Brian, so he did maps around town, he drew his own, learned to walk around town safely, and even presented a map to his classmates at the end of the unit. Other times Brian is fully included is specials, like art, gym, music and of course lunch and recess. But the children understand the times that Brian is not and are usually a bit jealous as to why they can’t do more fun, hands on activities like Brian.

It was so nice to have such a great program in place for Brian during the last two years was when I started my college journey, I could finally let go a bit and trust that he’d have a successful year. This really allowed me to focus on my goal of becoming a certified teacher. I would never have had time for full-time college in the past with all of the advocating work I was doing, plus raising my family and working full time. I can see how all of this was preparing me for the next stage in my life and ultimately for this culminating study. Not only did I step into my final year of college this year I also stepped into a new living relationship with my boyfriend. We had been dating for a year and decided last spring to bring our relationship to the next level of commitment for us and move in together. I notified the new school and sadly told Brian’s old school about the move on the first of June 2003.

So here we are again, facing a huge transition, I moved Brian from one elementary school to another. He had to leave a familiar and safe environment, where he knew how to get his needs met and most adults and peers understood his communication, to face a new school and many new challenges. It has been a harder transition than I first thought it would be. Not only for Brian, but also for myself. I had previously viewed the new school, Marlboro Elementary School (MES), last year when I was doing my school observations. I left with a very positive impression and had hoped to student teach there someday. My intern minister from St. Luke’s church in Chester, John Morris, was a first grade teacher there before he retired. I had heard wonderful things about the school from John and from my boyfriend, who remembered that John taught both his daughters when they attended MES many years ago.

This is my reflection of the day I observed: I observed on Wednesday, January 22nd, 2003 the primary classroom at Marlboro Elementary School. This is a small town school and I was interested in observing the unique way this school meets the needs of children with varieties of intelligence and learning styles. They do this by providing a multi-age classroom consisting of children between the ages of six and ten years old. Currently there are two teachers and a teachers’ assistant who team teach to guide the children in their learning. This teaching style is based on the philosophy of Dewey and Montessori. I was thrilled to see it working in a small town in Vermont.
In Their Own Way: Discovering and Encouraging Your Child’s Personal Learning Style by Armstrong, was a favorite book of mine. It was in this book that Gardner’s model of the seven varieties of intelligence came alive for me. I could clearly see the disservice of what Armstrong calls the four T’s: Talk, Textbooks, Task Analysis, and Tracking mainly being provided in public school today. I could not agree more with the multi-age concept Marlboro School embraces. “Children at all ages develop at different rates. We do not have grades one, two, and three nor do we refer to children in this way. We have observed that by breaking down the grade structure we allow children to develop in a more fluid rather than hierarchical manner. We view each child as an individual learner whose program should be designed according to his/her needs. We consider social, emotional, and academic development equally in our planning.” The school philosophy goes on to describe the benefits of the multiple years of teaching the same student and how this relationship builds over years rather than months with both student and family.

I arrived towards the end of morning meeting and Jodi, an experienced teacher of eleven years, was asking the students to “Focus on that place inside yourself” and notes that some people are really ready and some haven’t found that place yet. She goes around the circle and touches them on their head. They walk quietly to write in their journal, the next part of their day.
I was really interested in the classroom. There is a “Grow Lab” or nature corner with lots of plants, a huge butterfly net with a crystalist growing inside, and a guinea pig. There are two lofts and a couch for comfortable areas. The small tables are set up for social times and quiet work. They have computers located in different parts of the room. The walls are covered with photos from the various field trips and projects they have done: Sugaring, Hogback Science-Nature Center, Hamilton Farm, Town Builders-kids creating 3-D art to make towns, Pond Life, 100 Piece Puzzle Champions, Cooking Projects, Holiday Production, Family Trees, and Spirit Week. The personal interest of the teachers in the students shines clear here; one whole wall is covered with moving-up day photos and the book called, ‘The Most Important Book’ is filled with each child’s photo and describes that student’s attributes and family.

The schedule is listed clearly on the blackboards along with different classroom rules. For example: Outdoor Science Adventures, Please, stay with your group, Follow directions, Walk and do not use playground equipment, Respect living things, Use science equipment appropriately, Do not get ahead of the leader. All good, common sense rules for an outdoor adventure. I could see clearly that this school takes learning as a hands on adventure. I felt that I stumbled into a truly child-centered learning environment. All of the nurturing pieces are present.

After recess and lunch each day, the teacher follow up with a debrief highlighting positive recess behavior. Children are able to develop friendships of all different ages. In a small town this is crucial to enabling children to have more choices in developing relationships. I really enjoyed my visit. I was happy to realize that in this school a child’s individual program is not done because he/she is learning disabled, but it is done because these teachers realize that all children have different learning abilities and create each program individually. (End of my observation report)

When my life lead me to move in with Brooks who lives in Marlboro, VT I soon realized that my children would be able to attend this great public school and I was excited for them. Although I knew transitions are hard on Brian I believed that this school had all of the right ingredients for Brian to be successful. Yes, it meant a lot of prep time up front on our part and I wondered if the school would be willing to do it? But even more importantly, could we all envision inclusion in the same manner for Brian?

Well, again, the realization that inclusion means different things to different people became very clear as I started working with my new team at Marlboro Elementary School. Even though I notified the special educator at MES before the end of the school year last year, she could not really proceed in placing or assessing Brian until we had officially moved into her district. This is a sad fact in my mind because had the two schools been able to work together it could have made this a much simpler and successful transition for Brian. I was glad that Joanne, our new special education case manager was at least willing to spend a half day with Brian and his team at CAES before the school year ended. She viewed a typical day for Brian and some of the pieces that made it work well for him.
We agreed to keep Brian’s summer program in place and the two school districts spit the cost based on our time line for moving. One part of the special education process I have always hated is the paperwork involved in writing Brian’s IEP’s. I would wonder if we would ever get to the “planning parts” of Brian’s day that are most crucial. I found that what happened when we met to plan Brian’s classroom setting at Marlboro Elementary was a ton of paperwork for his tri-annual evaluation and this year’s IEP. I understand the importance of meeting deadlines but to me the most important deadline was school starting in ten days and if we had a regular classroom teacher and aide in place? What will Brian’s first day look like? Does he have a schedule, he needs routine. How is Brian going to get his needs met? Will his teachers, peers, and aide understand him? I was feeling frustrated that because the special educator doesn’t get paid for the summer we could not meet to discuss all of this until just before school started. To me this was a lose of precious time and hasn’t helped to make Brian’s transition between schools go any better.

I met with Joanne, the case manager, Francie, the school principal, and Abby, the special education director for the district that day. We had a few goals, one to place Brian in a grade, two to discuss the first day of school and any accommodations needed, three to discuss his upcoming evaluations and due dates. We ended up spending almost the whole time discussing his placement. I felt like Brian should be entering fifth grade since that is the grade he would be entering if we stayed at CAES. Brian was in a the third/fourth multi age setting and we planned on successfully moving him up with his peers. Seeing that MES is also a multi age classroom setting and offered two choices a fourth/fifth grade combo and also a fifth/sixth grade combo I assumed we’d choose from these two male teachers. Instead, I was presented with the notion from Joanne that the junior high was to most appropriate placement for Brian. She felt that based on his age, twelve, that he should be entering seventh grade. She also felt that it would be easier to serve him in that setting because she has a group of students with special needs in that placement, additionally the support staff was in place and the peers are familiar with students being accommodated there. I was really surprised that they felt my son who was leaving fourth grade would be ready to enter the seventh grade. I had so many mixed feelings, but was torn by how convincing Joanne was that this would be the best placement for Brian. She had read his records, she observed him at CAES last year, and she had twenty two years of experience in this field, so I decided to go against my gut feeling and agreed to give the placement a try for ninety days. With a decision finally made and time running out, we started to look at Brian’s first day of school and what we’d need to do to make it successful. I ended up spending three hours at school that day and left feeling very concerned and frustrated as I counted down the ten days before school opened.

The first day of school in junior high is called mystery day and they go on a field trip and engage in some “get to know you” activities. Brian is a creature of routine and he has some bathroom issues because of his imperforated anus at birth so Joanne and I talked about how we could accommodate him on the first day of school. We’d need the aide to have a car so if Brian couldn’t join in, he could be brought back to school, or if he needed a private bathroom, he could return to MES quickly. I was reminded of Brian’s severe language delay causing social and emotional impacts right off plus his physical needs that must be addressed up front. How quickly I’d forgotten the time needed to meet the increased planning and collaboration demands that make a successful experience for Brian. Although I have learned this lesson many times in the past, I wondered how come the school waited so long to start this process. Was it the lack of knowledge around classroom load factors? Or maybe they didn’t realize Brian’s intense needs? Or could it be that their idea of inclusion and mine were completely different.

It was the latter that seemed to ring true. My perception was that the school seemed to feel that Brian did not have to reach the same educational, social, or emotional goals as his peers in the classroom, he just needed to be assigned a seat in a regular education classroom. To me this was geographical inclusion, lacking adaptions, he was in the general education classroom, based on his age, not on his needs or his capabilities. I remember the check list we created when Brian was nine, is the curriculum appropriate, are his language skills appropriate for the needs in this classroom and what is the social make up of the group and is it appropriate? Here we were again. Not one of these questions received a yes. I realized within the first few days of school that I had made a big mistake agreeing to the seventh grade placement. So now what.

Things quickly came to a head as I was notified that the junior high was going on a three day field trip to hike and camp overnight at Camel’s Hump, climb a rock wall, and visit a museum. Joanne explained that some of the other students with special needs were going to hang out at the school with their aides and what did I want Brian to do. Clearly the activity was not appropriate for Brian, just like the classroom setting appeared to be. I told Joanne that I felt like we were lowering our expectations for Brian if we didn’t let him attempt part of the hike and be part of his classroom community. I also commented that if this was an annual trip we should make it a goal we work on weekly so that next year he could participate fully. Joanne seemed to be getting the message that I wanted more for my son than a special education class hidden inside a regular education classroom. I truly wanted Brian to be part of his school community and that we had a lot of work a head of us to make this happen.
As we were discussing how to accommodate Brian for this field trip I decided to tell Joanne that I thought we’d made a mistake by skipping fifth and sixth grade. I asked what activities were going on in the lower grade classrooms to get a sense if they might be more appropriate for Brian. I found that David’s classroom, the fifth/sixth grade, would be walking Woodford State Park and studying the environment for their first field trip. This would be an easier, level hike and would not have to be modified at all for Brian to participate, at least not on the surface, we would still have to figure out what Brian was interested in and help him explore at his developmental level. But physically, socially, and emotionally no accommodations would be necessary. I asked Joanne if I could view this classroom to see if it might be a more appropriate placement for Brian. She did set this up for me the following week and along with viewing the fifth/sixth grade class, we also looked in at the junior high during art class, and stopped in to talk with the team teachers from Brian’s current placement to find out how they felt it was going.

I have always felt that it is important for the regular education teachers to take a sense of ownership when it comes to Brian being in their classroom. Tim and Jen, the co-teachers in the junior high, were not even given a week’s notice that they would have Brian in their classroom or what any of his needs would be. In the article, “Inclusion: Empirical Guidelines and Unanswered Questions” the author notes that students are less likely to become “true” members of a classroom when the teacher views them as guests. Some of the areas identified as contributing to a sense of ownership include designing and implementing educational experiences that can be used with all students, and providing the general education teacher with the supports needed for them to assume responsibility for the included student. (Wilson, 1999, p.9) I felt that these teachers had their hands full with just getting to know their new “regular” education students and that for them to find the time to take on the additional work load to develop, implement, and accommodate Brian’s high needs would be difficult at best. I believe that this is also true for any other regular education classroom placement, but I was weighing my options, not wanting to spend a lot of effort with the junior high staff if I didn’t feel that this placement was appropriate for Brian. But because I hadn’t met his classmates yet and I wanted to view the whole picture I decided to head down to observe the junior high art class. I was not really phased by the fact that most of the peers were larger than Brian, I have found that Brian’s physical development is delayed by his chromosomal make-up. What really surprised me was the gap between Brian’s social/emotional development and theirs. They were interested in dating and in that “in between” stage of childhood and pre-adolescence while Brian was still into Pokeman and Sponge Bob. So after our visit and talks, I decided that we’d like to see Brian moved down to the fifth/sixth grade now rather than later.

The hard part was to convince the school and powers to be why we wanted him moved from their classroom placement. I needed to pull out my advocating hat yet again. It was feeling rusty but I knew from our past experiences that Brian could have a good, inclusive experience in school, but we needed to do the foot work and a lot of it! We met on September 9th to discuss Brian’s current placement and update on the first two weeks of school. The people present were, Joanne, case manager, myself, Lisa, Brian’s aide, Jen, the seventh/eighth grade teacher, David, the fifth/sixth grade teacher, Francie, the principal, and Tom, the school counselor. The following is paraphrased from the minutes from our meeting that day: The group asked me to start, so I began with a background of Brian’s education and why inclusion is so important to me. I explained my effort to help the school with the transition by contacting them last spring. I said that I never felt the junior high placement was a good fit. I stated that I was concerned that the social/emotional fit is not right in junior high and that we need to base his placement on exactly what he needs, not his age. I reiterated that I want him to have true relationships and make friends. I noted that we can work together to pull out aspects of the curriculum for Brian to focus on and that I realize that no one grade would meet his diverse needs. Francie asked me what my long range view is for Brian. She noted that he is entitled to High School up to age 21. She was wondering if changing his placement would put him on a track for 8th grade graduation at age 17. She wondered if this would be the best decision for Brian. I said that I try not to think of him numerically and that I want to keep challenging him and expecting the most from him, while allowing him the opportunity to develop social and emotional competence.

Tom reminded us that this is the challenge for the team but that we may be looking at Brian with somewhat different lenses. Tom feels the junior high class is an exceptional group as far as their capacity to understand different learners. If we want to challenge him, there may be some advantages to having Brian on a tract that places him in the high school setting sooner, rather than later. There is no right or wrong here. Tom is guessing that I am having a difficult time with the age of his peer group now. I responded that Brian would have been going into fifth grade at CAES and that putting him into seventh has been too big of a jump. I am willing to start looking at the Brattleboro Union High School curriculum but that right now we have some long term goals just to help Brian enter the seventh grade curriculum here at MES, I feel high school is still a long way off.

Joanne states her feelings again that she feels a responsibility to advocate for Brian, to help him be in a program that is age appropriate, and that she has consulted with her colleagues regarding this. She notes that she believes that CAES did Brian a disservice by holding him back in second grade. David asked if there was a way for Brian to have both. Jen and David don’t think there is a right or wrong. Jen feels the junior high has advantages, like the Farm Program, there is a special ed program within a regular classroom because there are a number of students with disabilities doing different off shoot projects. David says Brian could have lunch or art with his class. Tom thinks Brian needs a place to call home but his orbit can be the whole school.

I stated that I believe the classroom teacher has to take ownership. Brian needs to know where he belongs. He like the structure of his class and he needs that. He has always had special projects. Inclusion was for Brian to do special things with regular classroom peers being with him. He learns from others who are not in special education. I feel that the junior high projects are special education projects which are not pulling in regular education students. It looks like a special education program within a regular classroom, to me that is not inclusion, I feel that when Brian works in groups with peers from his regular classroom that this is inclusion. David said he would not be comfortable having his kids doing the Farm Project because it isn’t part of his class. I asked if David’s class activities are more attainable for Brian and would offer more opportunities for Brian to be part of a classroom community. How can Brian learn social competence if we are doing the segregated, pull out method of teaching?

Joanne brings us back to the fact that curriculum will evolve, it is really not the concern now, there are lots of opportunities for off shoots…..but we need to find an appropriate placement for Brian now, 90 days may be too long because Brian needs to know. We need to get his home base and then look at curriculum matches. I decide to try another approach….doesn’t it make sense to have a peer group he can move forward with into the junior high. Francie asks if Brian’s relationships in the past are friendships and I say that I witnessed real friendships, not surface ones. We are running out of time for our meeting so I clearly request that I want Brian to move into David’s class and that I can be flexible about the grade level assigned. Tom thinks that once we establish a base for Brian it will fall into place. We all need to keep in mind his need for social connection, his need for competency, and his need for life skills. Francie says as the LEA this is a large decision and she would like to check in with Abby and talk more with Joanne. I remind them that I need closure and Francie says she will try to answer me by the end of the day. It was noted by the team that they appreciated my ability to communicate and advocate for Brian. (End of meeting notes)

I heard from Francie the next day that the team agreed to move Brian into David’s class. We briefly discussed the grade issue again, I mentioned that I felt we could keep it open for now, to decide as a team further down the road based on how he is progressing. Luckily the timing for the transition was great because Brian’s junior high class would be going off on their three-day field trip next Wednesday, so it was decided that he’d start with lunch and art for the first two days of the following week in David’s classroom and then start full days on Wednesday when his old class would be gone. We also agreed to meet every Tuesday for an hour as a team to develop and implement the most inclusive day possible for Brian. Or maybe the right word would be mainstreamed day, because I have been learning that inclusion implies having no pull-out time from the regular education classroom setting.

Based on Brian’s unique learning styles and cognitive levels our experiences have shown that there are appropriate times that we do need to pull him out of the general education classroom. For example, he has been assigned the job of “Pizza Man,” every Thursday MES has Pizza delivered to the school for hot lunch, otherwise they do not offer meals. We decided as a team that this was one way that Brian could experience real life learning in a meaningful way. Brian job entails taking the orders from the various classrooms, counting the money, placing the order and then delivering the orders to each classroom. It is my hope that he will be able to include some peers to help him with this “work” each week, allowing them to get to know Brian in this fun and engaging way. I feel that this individualized project allows him to use all of those skills we outlined three years ago, hands on, role defined, routine, in context, high tech, social, not too distracting, and manageable if he is feeling physically fit. I believe that if we consider these in the planning and implementing the rest of his school day we will be progressing towards our five family centered goals for Brian to fully independent at the use of a computer, a sport or social club, his own self care, his language development, and developing autonomy.

During my research this month many sad facts regarding the reasons why inclusion fails for far too many special needs students came to light. Brian and I have come across many of the same obstacles and thankfully have found ways to work with or sometimes around the professionals and/or obstacles. Lack of professional development programs, time for regular education and special education teachers to collaborate, flexibility within the classroom structure and school structure, consideration of classroom load factors, and more reliable support within the regular education classroom are just a few points that I ran into and had to achieve accommodations for throughout our struggles of developing and offering Brian an inclusive education in today’s public schools.

My story does not end here, advocating for Brian at MES is just beginning. While I was reading the many articles and books this month I realized that an hour a week of team meeting will not suffice when it comes to meeting the increased planning demands of truly helping Brian to be part of his new classroom and school community. Research shows that the least likely to be educated in a general classroom are those whose disabilities are considered severe: multiply disabled (9.1%), mentally retarded (8.6%), deaf-blind (7.7%), and autistic students (9.6%). The education of these students continues to occur in significantly separate settings such as separate classrooms, schools, and residential facilities. I do not ever wish for that to happen to Brian and I am even more convinced now of the many pro’s of including Brian with his peers.

I have found that the positive effects of inclusion on general education students and staff can be overlooked sometimes. Research shows that inclusion enhances regular education students learning in many positive ways; through the development of ethics and understanding about disabilities, the development of friendships and interpersonal skills, it teaches the value of trying hard to do your best and of developing patience. Research also shows benefits to the many professionals who learn the value of collaboration while supporting each other to reach student-centered goals, instead of teacher-centered goals. In the article, “Merry-Go-Round: Using Interpersonal Influence to Keep Inclusion Spinning Smoothly” the author notes that the larger community also may benefit, because inclusion promotes the acceptance of diversity and maximizes the potential of every child. It is also cost-effective, because children will learn skills that will increase their independence later in life (Oremland et al., 2002, p.2).

The difficulty in planning for an extremely diverse group of learners has been a frequently echoed concern throughout my research and is even more challenging when the teacher is faced with multiply disabled students, like my son Brian. It was for this reason at our last team meeting that I suggested that we needed more intense assistance if we wanted to offer Brian a quality education. I requested that we consult with Craig Barringer from the I-Team (again, for Brian and I) so that as a team we could work together to help Brian create meaningful relationships and activities, offer him personal choice and control while living at home and being a part of his new community. It is unfair to place the total responsibility on Brian’s regular classroom teacher to accommodate him and I have found that much of the debate is not on the merits of inclusion as a basic philosophy but on the capacity of the education system to accommodate such a restructuring that would be necessary to make inclusion a possibility for all special needs students, especially those with severe disabilities.

To surmise, I have found that research is showing that inclusion is beneficial to regular education students, special education students, and the school staff. Now much of the debate seems to be centered around how schools can best serve all students effectively. My exploration of inclusion has brought me to the belief that because we have included Brian since he was two, in his community and the general education classrooms, we have started to give Brian the best tools to combat what author Barbara Wilson calls “learned helplessness.”
She states that, “being presented with the opportunity to make choices and decisions regarding their activities and future directions can allow children with severe disabilities to avoid learned helplessness, a pattern of inaction related to a belief of being unable to impact their environment. To produce a generation of individuals capable of being self-determining adults, students with disabilities require opportunities to exert their choice-making abilities prior to adulthood” (“Inclusion: Empirical Guidelines and Unanswered Questions,” 1999).

I feel that this quote helps to sum up what inclusion means to me today, the opportunity for Brian to become a self-determining adult. I believe that part of my new learning and thinking that evolved from this study is a clearer view of how I see Brian and what I want for him in the future. I want the next ten years of his schooling to focus on life skills that will help Brian become a self-determining adult, by enhancing resilience, social competence, self confidence, problem solving skills, and a offering him sense of purpose.

Brian could have given up back in second grade when he couldn’t express his wants and needs, and was so frustrated with school that he wouldn’t get out of the car. Instead his behavior forced us to look at the way we were teaching him and we decided to make the necessary changes to meet his unique learning styles. Brian has always worked harder than anyone I know to get his basic human needs met. His examples of determination, strength, and courage have encouraged me to grow and reach potentials in my life that I am not sure I would have discovered had I not been blessed with having a son with special needs. Brian continues to be my greatest teacher, he reminds me daily that to teach means, to grow, to question, to share, to love, to nurture, to change, to be open-minded and even to scream some days, why! But when I am sad or discouraged, many times it is Brian who notices my mood and draws me a flower. He will look up at me and smile his sweet smile and I’ll remember that being a parent is the most important job I will ever be given.