Parents As Partners

By Pat Javor

As the parent of a nine-year-old child with a physical disability who is integrated in grade four, I firmly believe that the parents and the teacher form an important partnership in the child’s education. Parents are, indeed, experts on their child, and parents of children with disabilities possess a wealth of information for the teacher to draw upon. The teacher never need feel he or she is without resources.

It is critical for educators to understand that the parents of a child with a disability often experience grief over the "loss" of a child they had thought would be able-bodied. Some parents make the adjustment more easily than others, who might not be very open to discussing their child’s disability.

However, there are alternate resources available to the teacher. Last year’s teacher is an excellent resource. Treatment centre staff who visit the classroom on a regular basis are others. Reading material is often available from the resource centre of the child’s treatment facility, which provides educators with information on specific medical conditions and also on special education. The treatment centre which provides my daughter’s therapy holds regular Parent Information Nights which are open to school board staff.

But for those parents who are open to approach, establishing direct communication is an integral part of the successful partnership. A "communication book," a daily journal which travels between school and home with the student, provides a written record for ready reference and offers feedback for school staff and parents alike, allowing parents the opportunity to offer solutions to issues, and reinforcing the teacher’s interest in learning about the student.

This year, my daughter’s school held parent/teacher interviews in September to present parents with an opportunity to share valuable knowledge about their child. A questionnaire for parents to fill out and bring to the interview gave us the opportunity to provide observations and opinions. It was the best use of parent/teacher interview time I’ve experienced. I came away knowing Jessica’s teachers see the same child we see at home. They are comfortable with Jessica’s disability. In turn, Jessica can only benefit from such an environment, because she will be comfortable with who she is.

The case conference, attended by parents, teacher and principal, is an excellent forum for gathering information and exchanging ideas. We found that a case conference held the last week of August gave Jessica’s grade-one teacher, Linda Coombes, a solid information base for starting the academic year. Coombes says, "Parents have a goal for their child. They see the way they would like that child to grow and fit into society. We need to work together as a team to achieve that goal." Our case conference gave Coombes the opportunity to find out just what our goal is for Jessica.

Timely communication prevents misunderstanding and it means that problems, if they arise, can be dealt with immediately, not after the fact when they can reach crisis proportions. Parents prefer that the teacher ask questions rather than make assumptions or choose not to express concerns.

As parents watching our child manage her disability, we have developed an immense respect for her tenacity. We take absolutely nothing for granted in terms of Jessica’s development. Tasks performed without thought by able-bodied people are challenging for Jessica. Despite this, Jessica has fulfilled -- and in many instances, surpassed -- the expectations set out at the time of diagnosis of her disability.

My husband and I are filled with admiration for our daughter’s personal motivation, her enthusiasm and her energy level. She is not a catastrophe; she is not an ongoing sorrow. Because of our strong belief in Jessica, we do seek excellence from all of the professionals who work with her. "Excellence" in our minds is defined as approaching Jessica with respect, in a non-judgmental and understanding way, which will promote her independence and raise her feelings of self-esteem, enabling her to become her own best ambassador -- an important skill for continued successful integration throughout and beyond her school years.

For the student, meeting milestones is the source of great pride and a sense of accomplishment; nonetheless, it is also the product of a great deal of effort on the part of the child. Children with disabilities really have to "work" at having a childhood because they not only have to overcome their disability, but frequently have other factors, such as fatigue, regular therapy intervention, recovery from surgery or the psychological struggle to accept their differences, with which to cope.

Regular therapy is carried out not only by the therapists who visit the school, but also by the parents at home. One task is to increase the teacher’s awareness of "life after school." Each therapist designs a home therapy program which requires 10 to 15 minutes per day. When you consider that Jessica has three therapists designing home programs, the demands on out-of-school time add up. When a teacher asks for five minutes per night of reinforcement on spelling and 10 minutes on reading, it increases the burden.

But just as the educator relies on parents to invest 15 minutes per evening in an academic program, parents of learners with disabilities hope we can rely on educators to reinforce therapy programs at school. Often there are classroom, physical education or fine arts activities which are perfect for practising skills. This may be the workable balance which will decrease after-school demands on the student.

A less obvious energy drain for a child with a disability is that of coming to terms with his or her differences. Usually these children realize around grade one that their disability is not something they will grow out of, and the realization is often overwhelming. At each stage of development, a child with a disability observes classmates performing tasks which he or she may only be able to accomplish with a great deal of effort, if at all. There are constant reminders of their disability in an integrated environment. Jessica frequently verbalizes the wish that she could be more independent with various tasks. Emphasis on Jessica’s strengths and abilities is vital to maintaining her self-esteem and sense of self-worth, which in turn fosters the motivation to take risks trying new or challenging tasks.

In an integrated setting the student may attract a great deal of attention at recess times, as the other students, naturally curious about the child and his or her disability and equipment, can crowd around. Some thought must be given to handling a situation like this as it can be intimidating for the student with a disability. A class discussion may help the student and peers resolve some anxieties around the disability and will increase the comfort level in the classroom.

Such a group discussion, in which the other students pose questions and the student with a disability answers them, allows the child to explain his or her disability, equipment and feelings, and allows him or her to set limits on what he or she is willing to discuss. It allows other students to satisfy their need to know about something they have not been exposed to previously. The teacher need not facilitate the group discussion; there may be a family services worker on staff at the student’s treatment facility who would be happy to perform this function. Parents can indicate if their child has ever expressed an interest or felt a need to communicate to peers in respect to his or her disability, and whether such communication has been successful in previous academic years.

As a client of our current health care system, a child with a disability "graduates" through several therapy support services even before entering kindergarten. Parents become co-ordinators of all therapy intervention in their child’s life. As an educator, it is important to realize that the parents are the sole continuous partners in their child’s course of medical treatment or therapeutic intervention. Parents can provide an accurate history of strategies which have been tried to date, which of these strategies have been successful and why.

Proper use of the child’s equipment should be taught to school staff and the student body. My daughter has had problems with "hitchhikers" on the back of her power wheelchair. While it was wonderful that the other children thought Jessica’s wheelchair was fun, this activity stressed the motors and contributed to early burnout of the motor bearings, resulting in a $150 repair job. Government funding for repairs or replacement due to improper use does not exist. A copy of the instruction manual for the student’s equipment may provide teachers with necessary information to prevent unintentional misuse.

Teachers should get hands-on experience with the student’s equipment, whether it be as simple as a pair of tabletop scissors or as complex as a computer. This will allow them to give direction to the teaching assistant and better incorporate the student and equipment into the program. It also raises comfort level and reassures the student that the teacher is an alternate resource for assistance.

The role of the teaching assistant is that of a facilitator -- not an educator, not a parent, and not the student’s voice. The teaching assistant is, in Jessica’s case, her legs and sometimes her hands; certainly not Jessica’s brain. The teaching assistant is not a failure if Jessica does not remember the homework; rather, he or she is a success for allowing Jessica to take on the responsibility for completing the assignment or suffering the consequences. It is recognized that self-directed care for an adult with a disability is a reasonable goal; an appropriate beginning in childhood should be with the student directing his or her care in school.

Of tantamount importance in seeking school placement are the staff’s views on placing the child in the school. Educators should look at not only what the school can give the child, but also what the child brings the school. Iolanda Basso, Jessica’s grade-two teacher, held the view that having Jessica in her class was a two-way learning experience. She readily admitted that she had never had a child with a physical disability in her class before. But we have found that it is not previous hands-on experience, but a teacher’s open-mindedness and willingness to increase his or her own awareness, which make the educational experience a success -- not only for the child with a disability, but also for the other students and the teacher.

Coombes indicated her interest in accepting the challenge of educating Jessica, but made it clear that she had no previous experience with a student with a physical disability. Thus right from the outset, we as parents had realistic expectations of this educator. We tried to be very careful to provide her with basic accurate information without overwhelming her. As the academic year progressed more information was exchanged at a pace which was comfortable and appropriate for teacher and student alike.
Both Coombes and Basso encouraged me to get involved with Jessica’s class as a parent volunteer. This made us feel welcome, made me a ready resource for hands-on demonstrations or questions, and raised Jessica’s sense of security.

The interaction between the student with a disability and other students is supremely important because of role modelling and development of social skills. The motivation through role modelling, and her acceptance by peers, have provided Jessica with the impetus to keep working on challenging activities.

The interaction also benefits the able-bodied students. Jessica’s classmates learn wheelchair etiquette. They get close to Jessica to look at her face when they talk to her, and are comfortable with her equipment. However, they have learned not to stand at her side with their feet tucked under the chair, because when she moves away, she can’t avoid running over their feet! The students are also learning that Jessica needs more manoeuvring space than other students.

Jessica’s classmates in grade one quickly recognized her linguistic abilities, and when faced with a new word, "Ask Jessica. She’ll know!" could be heard. The students have learned to appreciate Jessica’s strengths and abilities and do not dwell on her disability. When I explained to Jessica’s grade-two class that I was making a presentation to York University’s teacher candidates on educating a student like Jessica, one genuinely puzzled student reacted with, "But it’s just the same!"

Jessica’s most successful years have resulted from teachers who have made us partners --including us in discussions, listening to our opinions and suggestions, and asking questions. Informing themselves made it possible for them to then set realistic expectations regarding Jessica’s integration.

Parents are eager to be used as a resource because we have spent years problem-solving, and will continue to do so for years to come. Not only do we have prior experience, but problem-solving has become second nature to us. Teachers should not be afraid to "impose"; in a couple of instances, staff have been reluctant to ask us for information or assistance and have wound up "reinventing the wheel." Teachers should learn to "resource themselves" -- to impose, whether it is on the parents or other resource people who work with the student with a disability.

As a result of our partnership, we have agreed that Jessica’s disability should not be dominant, that we should build on her strengths. In fact, this is what any educator would do with any child. We are all aware that we should never indicate to Jessica that she "can’t," because many times she has found her own way of performing a task. I truly feel that because Jessica senses we believe in her, she has the confidence to attempt many formidable tasks, and the results amaze all of us.

I asked Jessica for her thoughts on this, and she said: "Sometimes I surprise myself when I’m building math structures. When I see the structure done, I feel good. I’m very proud of my work."

Jessica shares the dream of Martin Luther King: that she will not be judged by her outward appearance, but by the content of her character. I urge educators to become part of the team which will make that dream a reality for all the students like Jessica.

(Pat Javor is a freelance writer living in Mississauga, Ontario.)