A Principal's Personal View of Navigating the Special Education System.

As Father of a Special-Needs Son, He Discovers How Schools Can Better Engage Parents

Twelve years ago, Kyle was born with all the pomp and pageantry of a first son and second child. A few months later, my wife and I realized that something was wrong.

Just after Kyle's second birthday, we saw a CAT scan of an abnormal brain and a highly atypical EEG. Doctors had no idea why. At age 4, Kyle's problem was diagnosed as severe developmental delay with a seizure disorder. When he started kindergarten, he had the same nonspecific diagnosis.

It wasn't until just before his ninth birthday that Kyle was diagnosed with Angelman Syndrome, a genetic disorder characterized by, among other things, profound developmental delay in all areas, neurological problems, lack of speech, and stilted gait. Kyle was one of 20 children with Angelman Syndrome in Canada at the time. He now is one of 80.

Since I first heard those words, "handicapped son," I have experienced many emotions and travelled a rocky road. My wife and I had no experience with a special-needs child nor had I any experience working with children with disabilities during my years as an elementary teacher and principal. I had no clue what my family's future held or how many changes I was about to go through.

As a principal for 12 years, I routinely have encouraged parents to become more involved in their children's education and supported my teachers in their efforts to engage parents.

New Understanding

My thinking moved to a new place with my son's birth and our subsequent encounters (sometimes battles) with physicians and specialists, and our frustrations about not knowing why Kyle was disabled or how to help him. We learned to deal with the looks and comments of strangers and shared surprising moments of joy over Kyle's personality and slap-stick sense of humor.

I came to realize that even I as a public school educator found navigating the education system perplexing. The school didn't always understand my parental priorities and concerns. In my role as parent of a special-needs child, I constantly tried to help my staff understand what parents of other challenged children were going through.

In my daily routine I changed hats so often that I felt schizophrenic. I had to reflect on my conflicting expectations and roles. I discovered how intensely I felt about the education of special-needs children.

Philosophically, every child has the right to the same education, but this does not always occur. The rights of the special-needs child or the rights of the typical child should not overshadow one another.

I believe every child has the right to the best education possible and this can and does occur when special children are integrated with typical children in schools. In inclusive settings the special-needs child as role models for appropriate behavior and is part of a group of active, learning, playing children. The typical children learn to accept differences in appearance and capabilities. Many become champions of a child who may not be able to speak for himself.

I saw this when my first child, Jennifer, was in a primary classroom with a girl who had cerebral palsy. The children in the class accepted Kelly as one of them and included her in their activities. Jennifer talked about her a lot--not as Kelly, that girl in the wheelchair, but as a friend. I thought perhaps Jennifer's attitude had much to do with being Kyle's sister, but I found out later that most of her classmates felt the same.

When Jennifer started school, I was tremendously excited, perhaps a little anxious, but a proud father. I knew public school was where Jen belonged. She would have lots of friends, fit in with all the other children, and learn everything the teachers could teach her.

Two years later, when Kyle was about to enter school, it was different. As a principal I knew that he belonged there, but as a parent I did not feel the normal anticipation and excitement. I was afraid his seizures would recur, that he would be mocked, that the children would not play with him. Setting aside my educational philosophy, I wondered whether he belonged in the public school system. I was worried.

In the years since, I have come to realize as Kyle's father that this was just the first of four stages that we as parents would go through as Kyle moves through his school years: (1) separation anxiety, (2) role confusion, (3) concern about the future, and (4) partnerships. These stages are not a progression that I went through once, but serve rather as descriptors to indicate where I was at any given time. I slid in and out of them as Kyle began a new grade, changed schools, was paired with a new aide.

Separation Anxiety

When Kyle entered school, I was forced to imagine what other people saw. He was no longer just our cute little blue-eyed boy with blonde curls and a ready smile. With blinders off, what I observed filled me with considerable anxiety. At age 5, Kyle had the social development of an 18-month-old, the motor skills and mental development of a 9- to 12-month-old, and no real communication skills except pinching and pulling hair when he was angry or frustrated and laughter and bouncing when he was happy.

Our protective home had evolved into a place where Kyle and his abilities and habits, his being, were normal. The rest of the world might be less accepting of his differences. Anticipating that first day of school was for me (and I've since learned for many other special-needs parents) nothing less than traumatic. I wondered whether Kyle would fit into his class whether he would make friends or even participate in the daily curricular activities.

A rush of feelings that I thought I had overcome a few years earlier returned: "Why me?" "It's not fair!" "What can he do?" "Does Kyle belong in this normal world?" The stark reality that my child was not typical really sank in. Now a new set of children and circumstances made me compare my child to others.

My family was fortunate that the staff at the public school he attended soon helped us see that Kyle was making friends and mastering certain skills. They told us that typical kids played with Kyle and that he could do some kindergarten activities like sorting and matching. While this support reinforced my belief that Kyle belonged in an inclusive classroom, I was still on a roller coaster emotionally. Consulting with the school staff helped me establish a clear base of my child's abilities and a positive outlook on Kyle's role at school.

My wife and I also were relieved. For the first time in five years, someone provided us with an extended break from the 24-hour-a-day, 7-day-a-week pressure of caring for Kyle. In the past I might have harbored unforgiving thoughts about parents who simply "dropped off" their kids at school and washed their hands of interaction with the school. Now I began to understand what parents might feel. Apathy might be a cover for other emotions: heightened anxiety or even despair over their child's future at school, as well as confusion about what school people expected of parents.

I could never have anticipated how these anxious, sometimes downright painful feelings would give way to newfound hope.

Role Confusion

During those first months of school, the swings from anxiety to relief did not letup. However, I was lucky. Kyle's teachers gave me insights into how he was adjusting to his classmates and the routine. They allowed me to see for myself how his presence contributed in positive ways to the school. This reassured me considerably and started my transition.

My changed attitude--from fear to hope--about Kyle and his education didn't happen overnight. First, I noticed other children sought him out as a playmate. Second, my wife and I learned from his classmates' parents that Kyle was an everyday topic at their dinner tables. Finally, I realized that other children had become more accepting of his (and other children's) differences. Knowing that Kyle was on firmer ground socially freed me up emotionally in a way that m most parents of typical children can only imagine.

Next I realized I faced a new source of anxiety: confusion about my own role in Kyle's education. As a principal in the same school district, I had great difficulty admitting even to myself, much less the staff, that I uncertain about my role as a parent.

I never will forget my confusion and embarrassment when I could not express my expectations for my child. I was intimidated. I also was elated, considering it was the first time people expected something of Kyle beyond "fitting in." At a meeting of parents and teachers, I confronted the fact that my expectations for my child were too low. Like most special-needs parents, I had focused almost exclusively on wanting Kyle simply to fit in socially, to be accepted. Academic skills had barely entered my mind.

It took a teacher to show me that Kyle was capable of more--that he could do some basic sorting. I felt a spark of hope. It also took seeing and hearing positive things about Kyle and his progress to enable me to let go of the fears. I still was reluctant to get involved as I wasn't totally convinced Kyle was really doing academics.

I now realize that as a former teacher I had readily sympathized with the teacher who felt frustrated by what seemed to her to be parental indifference. Although part of me still empathizes with teachers' frustrations, having Kyle has made me consider the roots of parental noninvolvement. I have tried to consider what might be behind the apathy. Some parents clearly felt overwhelmed by the circumstances they face, but many others didn't know how to ask for help.

By the time special-needs children reach school age, their parents, if they are like we were, have had lots of feedback from doctors and other specialists who focused on their child's limitations and differences. These conversations were hardly uplifting, and our coping strategy was to expect little and focus on helping Kyle fit in.

Painful Awareness

Before our first encounter with school, neither my wife nor I had ever been asked what we thought Kyle's potential was or what we wanted him to achieve. We were told he was profoundly disabled, not to expect too much from him, that he probably never would walk, talk, feed himself, or use a toilet by himself. One psychologist told us that we should institutionalize him and go on with our lives. In our hearts we knew this was terrible advice, so we ignored it and set out to prove the experts wrong.

Because of their dealings with some professionals, most parents of special-needs children are painfully aware of their child's limitations and feel somewhat helpless and discouraged. At school they may fear hearing more defeating words from teachers or being overwhelmed by information to the point they won't understand the educational program or activities proposed for their child.

Reassuring parents by focusing on the positives and the progress that other special-needs children have made and the expectation that their child also will progress is important. I found myself moving from a sense of anguish to unexpected joy.

Today, as I witness how my staff works with discouraged or indifferent parents, I see the magic that positive feedback can bring. Getting support from parents at this point is difficult, but it's not impossible. Teachers who do not get support at first must keep trying.

Many of these parents recall from their own school days how children with developmental disabilities were treated. In those years, most special-needs students did not attend the neighborhood school and sometimes were sent to a facility outside their community. The school was in control and students and parents did what they were told.

From my experience with Kyle in school, I am trying to see with new eyes how we might build more effective bonds with parents. Th parents need to focus on seeing their child succeed at school and be accepted by other kids. In Kyle's case, it was his teacher emphasizing his successes at school that made me understand he did belong in a regular school and that he would have school friends and accomplish some academic goals.

Educators must help parents see the positive aspect to their child's condition. At my school we send home a daily journal about interaction with the other children and lots of school work with the usual stickers and happy faces. Our staff calls parents with encouraging messages. So do I.

The positive messages we send are based on authentic performance. The successes and acceptance are visible in the attitude and actions expressed by the people at school, comments from other children and parents, and a child's educational progress.

Two-Step Process

When schools meet highly reluctant parents, two things are needed to get them on board:

* to educate them about what activities take place in the classroom, and

* to involve them in their child's learning.

The student's individual education plan is an effective too to get parents educated and involve. This requires staff to spend time with parents before, during, and after the child's initial IEP meeting.

Before it takes place, parents need to learn the purpose of the meeting and the array of actions that may follow. During the meeting, parents need to be comfortable and invited to comment. At Kyle's first IEP meeting, I was overwhelmed by the number of participants (eight) and their enthusiasm for Kyle.

After the meeting, teachers must listen to parents to ensure that their needs are being met, at they understand what is happening, and that they see their child's accomplishments.

Tangible Evidence

In my school, we help parents of special-needs students see their child doing work similar to other children by videotaping the children in different activities to document progress. Parents may not know that their child has made a stride, but they can surely see it on videotape. Kyle's teachers videotaped him three or four times in kindergarten. It was so easy to see his growth that I have asked his subsequent teachers to do the same.

Introducing parents to their child's friends and many helpers enables the family to connect with the school. Then, when we talk about activities or people, parents have a face or a context in which to put the event. Few parents, including some who work as educators, have an educational base by which to compare their child's behavior. Parents must be invited into the school to see their child in action.

It is not enough just to attend meetings. Parental involvement must go beyond meetings. Contact should be frequent. In Kyle's case, his aide communicates by keeping a little notebook that travels between school and home each day. We also keep in touch by telephone and my wife has served in the classroom once a week as a "hot lunch parent."

These informal contacts allow us to feel part of what is going on at school regularly. They also provide opportunities to share many wonderful moments that happen during a day that can easily get lost in the myriad of events surrounding the life of a special-needs child.

Next Steps

Once parents of special-needs children understand the basic school process (which may take weeks, months, or even years), they enter the third stage where they start to see how their child and school fit together. Now parents will be able to expand their goals for their child from strictly social to academic. As parents better understand their child and the system, their comfort and desire to participate in school are likely to increase.

At this stage, parents will not always wait until they are asked to get involved. They start asserting leadership by suggesting improvements to the partnership agreement between home and school. Because parents respond positively to the school during this stage, the cooperative relationship needs to be expanded. The parents will have many ideas and much enthusiasm; the school's role is to keep the energy focused on the child.

As a Stage 3 parent, I found myself eager to attend Kyle's IEP meetings. I felt comfortable expressing my goals for my son. I knew I was a valuable resource and was confident my knowledge of Kyle could be melded together with the resources of the school to give Kyle the best education possible. After all, my wife and I were part of how we got to that stage and our input and participation were necessary and valuable.

Equal Partners

The comfort gained during the previous stage grows to a point where parents start to assume equal partnership with the school. They are knowledgeable enough to make valuable contributions to their child's education. They are comfortable with the system and their role in the education process.

At this stage, teachers must accept the fact that parents are experts in more than one aspect of their child. And while the school now is working more closely with parents, educators must not lose sight of the separation of parent and teacher roles. Information, not the role, must be combined. Many separate home and school decisions remain.

Kyle has just completed fifth grade and during the past two years my wife and I felt like Stage 4 parents. We were active in all educational decisions. The skills we worked on with Kyle at home were augmented by what was happening in the classroom and the specific skills being taught at school were reinforced at home.

For example, we have a long set of stairs at home and Kyle was determined to go down the stairs on his feet, holding onto the rail. That made us nervous because Kyle has a balance problem. We told the school about our concern, so time was spent during physical education class and at recess reinforcing safe climbing.

Kyle's individual education plan grew from a document telling how Kyle's own activities could fit into class time to a plan that paralleled the teacher's day book. If the teacher's objective in math was to get the students to add three numbers with regrouping, we focused on the intent of the objective, which was to add on or to make things bigger. Therefore Kyle's parallel activity would be to work with his blocks, adding on to make a tower higher. By paralleling the activities, Kyle could be part of the daily classroom activities and his opportunities for academic-type interactions with his peers increased. This plan was devised with input from all parties.

In Stages 3 and 4, the relationship between the home and school is the basis for all decisions. The relationship changes and grows depending on the personalities, strengths, and commitment of those involved. Some parents, perhaps because of their personal situations or previous school experiences, may not be able to progress beyond a certain stage.

For many parents, the process usually contains some regressions to a previous stage. This most often occurs when changing from teacher to teacher at the end of each school year.

More drastic regressions for the parent take place at traditionally tough times: moving from primary to intermediate or elementary to secondary school. On these occasions, parents often sit back with a prove-it-to-me attitude. They watch and wait until new staff members show that they, too, are meeting the needs of the child. The school needs to respond in its usual manner, educating and involving.

At all stages, educators must deal with that parent with appropriate expectations. Expecting too much from parents isjust as frustrating for them as it is for us. We want parents who are happy, confident, and curious--not angry and frustrated. We also know the attitude at home comes to school with the child.

Optimistic Outlook

Kyle, now 12, is in sixth grade. His hair is a little darker and the curls are gone, but he still has those bright blue eyes and a ready smile. He has grown so much in his physical capabilities- he walks independently, though balance is still a problem. He can hold a pencil and scribble some pretty attractive "art," his toilet training is progressing well, and he no longer requires parental help walking down the stairs.

Socially Kyle has made incredible progress. He has school friends who call to see whether they can come to play, he has been invited to schoolmates' birthday parties, and he attends a swim and gym class for special-needs and typical children. Kyle's classmates always are willing to help Kyle in his activities.

Intellectually, Kyle now communicates his needs using a collection of 100 or so photographs. He is able to choose what he wants from a random selection of photos and give that picture to the person he is with at the time. Kyle has no speech (an effect of Angelman Syndrome), but his receptive vocabulary is at the 3- to 4-year-old level. He has maintained his wonderful personality and his uproarious sense of humor.

Now in the intermediate grades, the difference between Kyle and his classmates is widening. I sense a regression coming for me, but I believe I am equipped to deal with it.

When I look back on the old videos of Kyle and see how far he has come, I realize how great a role his teachers and classmates have played in his growth. I am grateful to his teachers who helped me to see my son's potential and who gave me the chance to be a contributing partner in his education.

Concerted Effort My experience makes me more forgiving and less judgmental of parents who are less involved. I also am more reflective as a principal and parent.

As educators, we must tap all of our expertise and experience to help parents become more involved in their child's education. We must make a concerted effort to understand parents, their situations, their levels of interest, and their stages of involvement and understanding in the child's education. If we make the effort, most parents will meet us halfway.

By involving parents in helping to set educational plans for their child, higher and significant goals are accomplished. Parents experience the joy of having their child succ succeed at school.

I have learned this one thing well: When special-needs children feel successful in school, they not only are accepted but also play integral role in the positive atmosphere of the whole school.