Babak K. (a pseudonym) is a five-year-old boy of Iranian decent who has been a student in our preschool program for students with developmental disabilities for three years. In addition to the services provided by the preschool teacher, he receives services from the speech/language therapist, physical therapist, and occupational therapist. In spite of the efforts of these professionals, they feel Babak is making no progress and, in fact, is losing skills he once had. He has recently been experiencing seizures and muscle weakness and the staff is concerned there are medical issues that need to be addressed. Babak has had many absences recently. He also never attends school on picture day or on days the class is scheduled for field trips. Because he is turning five, Babak will exit the preschool program at the end of the year and must now undergo a battery of tests (psychological, educational, medical, and social study history). An eligibility committee will review these findings and determine the appropriate school age placement for the next school year.

Although many attempts have been made to contact the family to discuss the upcoming testing, school staff received no response from the parents. In the past, the mother presented herself as the spokesperson for the family. The father had never been to school for open house or IEP conferences. On those occasions, Mrs. K. made it clear that she felt her son was not making progress because Farsi was spoken in the home and the two languages were confusing to him. Mrs. K. felt her son spoke in Farsi and school personnel did not understand him. She wanted the school to ask for a waiver so Babak could stay in the preschool program an extra year with additional one-to-one speech therapy to increase his English skills. Mrs. K. expressed her mistrust of school staff and was not anxious to have Babak tested.

My puzzlement is: I wonder how I, in my role as assistant principal, can help this Iranian family through the preschool exiting process which includes testing, eligibility, and possible labeling and placement of their son in a school age special education program?

This study and puzzlement is of particular interest to me because we are getting an increasing number of children with languages other than English spoken in the home, who are working below age and grade levels. It is often very difficult to separate out the issues surrounding the process of second language acquisition and the possibility that the child might also have a disability that is medically or cognitively based (Fueyo, 1997).

All parents go through various psychological stages that, hopefully, lead to eventual acceptance of the child and his/her disabilities. These stages are based on Dr. Elizabeth Kubler-Ross' work with death and dying (Kroth, 1985). It is difficult for most parents to accept that their child might have a disability. It is often doubly difficult for parents of other cultures to work through their psychological issues and also have to make educational decisions when they neither understand nor trust the school system or its staff. In addition, each culture has a different set of attitudes and beliefs concerning persons with disabilities.

Initially, my focus was going to be on the mother since she was the contact person. However, when I became more involved in the case, I realized that if I were to be at all effective, I would have to address the family as a whole.

In order to approach my puzzlement in a logical and productive manner, I made a list of culturally-based questions and other relevant questions for which I wanted answers. Then I decided upon a question to pursue in depth. My questions were as follows:

• How might these Iranian parents view children with disabilities (Hanson & Lynch, 1995)? (Cultural/psychological issue)
  What could the school do to promote involvement of these minority parents (Bailey & Winton, 1997)? (cultural issue)
• How might the school gain the trust of these Iranian parents (Hoerr, 1997)? (cultural/psychological issue)
• How might differences in childrearing practices and the role of the family be contributing to the puzzlement (Hanson & Lynch, 1995)? (cultural issue)
• Might differences in communication style be affecting the relationship between home and school (Kroth, 1985)? (cultural issue)
• Might the school enlist the support of school and community agencies (central registration, social workers, attendance officers, medical people, parent support groups) (Bailey & Winton, 1997)? (educational issue)
• Might assessment tools be used that would minimize cultural bias (Hanson & Lynch, 1995)? (cultural/educational issue)
• What is the student's level of functioning in English and Farsi (Fueyo, 1997)? (cultural/educational issue)
• Might the culture of the school and school practices/procedures be contributing to the puzzlement (Felber, 1997)? (cultural/educational issue)
• Might the curriculum/IEP and the role of the teachers and therapists be confusing to the parents (Felber, 1997)? (cultural/educational issue)
• Might current events in the family's native country be contributing to the puzzlement (Hanson & Lynch, 1995)? (cultural issue)
• Might there be medical and/or developmental issues contributing to the puzzlement (Bailey & Winton, 1997)? (medical/educational issue)
• How might school staff stay current on medical, therapeutic, and second language acquisition issues (Sparks, 1997)? (educational issue)

I decided to pursue the question, "Might the culture of the school and school practices/procedures be contributing to the puzzlement?" [CIP Question 3.2] and relate it to the other questions.

It was my hope that by finding the answer to that question I could effect some change in my school in dealing with culture and special education. In order to do that, I needed to find out how the parents felt about their child's progress, the school services, the school staff, and whether they felt that cultural differences played a part in shaping their son's progress. My personal goal was to develop a rapport with the parents, open the door for meaningful discussion, and become a source of information and support when it came time to make decisions for their child.

I gathered the information by interviewing the parent(s) with the assistance of an interpreter, observing the student in the classroom setting, and talking to his teachers and therapists. Because I wanted to feel prepared for my meeting with the parents, I compiled the following questions to be used in our conversation:

• What is the family structure (mother, father, siblings and their ages)?
• What is the level of education of the parents?
• How long have the parents been married?
• What are the parents' occupations?
• What is the parents' country of origin?
• How long have the parents lived in the United States?
• Are there any extended family members? If so, where do they live?
• What language or languages are spoken in the home?
• What religion is practiced in the home?
• Were there any problems during the mother's pregnancy with Babak?
• When did Babak reach developmental milestones (walking, talking, toileting)?
• How do they perceive Babak's fine and gross motor skills?
• How proficient is Babak in daily living skills?
• How is Babak's general health?
• What is the reason for Babak's numerous absences from school?
• Has the school and preschool program met Babak's needs? Why or why not?
• Is Babak unable to participate in field trips or class pictures?
• What activities does Babak engage in during leisure time at home?

Parent Interview

I invited both parents to the school to talk to me informally about Babak. I did indicate that a Farsi interpreter would be present. In spite of my efforts, only the mother attended. She explained that her husband could not come because he had to work. While I did have the written interview questions, I was familiar enough with the content that I did not have to refer to them during the conference. I wanted our meeting to be more of a conversation than an inquisition. I jotted down the answers to my questions when the mother left and while the information was fresh in my mind. As it turned out, the mother was fairly conversant in English and there was less interpreting back and forth than I had anticipated. Only a few things needed clarification.

The mother was very straightforward during the meeting that lasted about one hour. Mr. and Mrs. K. were both from Iran, had been married twenty-three years, and had lived in the United States for ten years. The primary language spoken in the home was Farsi, but they spoke English, too. Mr. and Mrs. K. were Muslims. Both she and her husband were college graduates. Her husband was self-employed, in the printing business, and worked long hours. She was a homemaker. Babak was the youngest of three children. His brother, age twenty-one, lived outside the home. His sister, age eighteen, was a high school senior and lived at home. There were some extended family members living in the area, but most of the family remained in Iran. They visited Iran once a year.

The mother's pregnancy and delivery were uncomplicated. Babak walked at eighteen months, had a good vocabulary in Farsi, and said a few words in English. However, she did report some feeding problems. Although the primary language in the home was Farsi, mother, father, and sister all spoke to Babak in English, too.

The mother had grave concerns about Babak's progress and recent seizures. She admitted he was losing ground in spite of receiving speech/language therapy, physical therapy, occupational therapy, and preschool class based services. Mrs. K. indicated that Babak said fewer words in Farsi and English, but still felt that was due to the confusion of hearing two languages. The mother said her son was falling more, was still not toilet trained, and preferred that she dress him. She assisted him with most activities of daily living and said that children in her culture were not expected to do all of these things as early as children in this country were. Iranian children were not brought up to be independent at an early age. Babak did not play with other children outside of school and spent much of his leisure time with family and church friends of their own culture.

Mrs. K. said she was generally pleased with the efforts of Babak's teachers and therapists, but felt he needed more one-on-one speech therapy because of his confusion between the two languages. She felt she had benefited from the home visits made by the teachers as part of the program. Although Babak was not sick often, Mrs. K. kept him home on days when the class went on field trips into the community, when student pictures were being taken for the yearbook, and when progress was being videotaped. Babak was kept at home so others would not know he was in a special class or because she feared he would get hurt or lost on field trips. The mother expressed concern about the upcoming testing. Although Mrs. K. knew Babak was not retarded, she was afraid he would test at a low level due to his poor language skills. Mrs. K. did not want Babak in a class for retarded children.

I assured the mother that I would observe Babak in the classroom, speak with school personnel, talk about her concerns about the upcoming evaluations, and get back with her. I felt I had made some progress. At least Mrs. K. saw that Babak was regressing. Perhaps she was concerned enough to be open to other answers to his problems. Maybe she knew subconsciously that there was more to Babak's problems than the dual language and cultural issues. Hopefully, she wanted some answers and would be more open to testing and the answers the results might hold. I was somewhat disappointed that Mr. K. had not come to the conference partly because I was curious to meet him, but mainly because I wanted Mrs. K. to have his support.

Classroom Observation

At the time of this observation, there were eight students, a teacher assistant, two typically developing "community kids," and a speech/language therapist in the classroom. The students were participating in circle activities and were singing songs, identifying each other by name, naming the specific day of the week, and talking about special holidays. They were asked to respond by verbalizing, signing, or pointing to the objects related to the topics being discussed.

I observed that Babak had great difficulty doing any of the activities. He did not seem to understand what was asked of him or show an awareness of the group around him. When asked specifically to respond, he needed a great deal of physical prompting. Babak grabbed papers and objects, was unable to express himself verbally or with signs, and exhibited much drooling. Unsteady on his feet, Babak needed constant one on one supervision by the instructional assistant. When the class transitioned to snack time, Babak was unable to feed himself and was fed by the speech/language clinician who used this time as an opportunity to do some oral motor activities.

Consultation with Teachers and Therapists

After observing Babak in the classroom, I conferred with the school staff. They all expressed concern about Babak's seizures and apparent deterioration in all areas in spite of intensive efforts at maintaining his skills. The speech/language clinician said Babak used to have one hundred English words that he used on a consistent basis. Now he said none of those and did not speak any of the words in Farsi she had come to know, either. She felt this had to do with the loss of muscle tone in the mouth and tongue rather than issues regarding second language acquisition. The physical therapist noted Babak's unusual gait, up on his toes and running in an unsteady fashion. The occupational therapist indicated that Babak was unable to execute the most basic of self help skills that he had been able to do two years ago. The classroom teacher had the same observations as the therapists. They all felt there were medical reasons for Babak's decline that needed to be explored.

Before formulating possible solutions and interventions, I reviewed my own findings and read extensively about the Iranian people and their culture (Hanson and Lynch). It was important for me to know that: (1) Family and extended family were the most important institutions and their main support system. (2) Family interactions and dynamics were shaped by religious rules and a patriarchal family structure. (3) Because of political issues in the Middle East, Iranians felt they were looked upon negatively in the United States. (4) Iranians had a general mistrust of Euro-Americans. (5) Cultural issues made acceptance of a child with disabilities, especially a son, extremely difficult. It was usually a source of guilt and shame with much of the blame placed on the mother.

Keeping all this information in mind, I proposed four main solutions and many interventions.

Solution #1

As a school administrator, I will ensure that school staff will keep seeking new strategies to increase/maintain Babak's skills as stated in his current IEP.

Intervention(s) and rationale: In order to help these minority parents have more confidence in the school and school practices/procedures, school staff will use their expertise and sensitivity to teach Babak. The school should:

• teach the child to use assistive technology as communication devices. These can also be programmed in Farsi. This approach might reduce the child's frustration at not being able to make his wants and needs known (Hourcade, Huer, & Parette, 1997).
• use signing in conjunction with other tools to re-open the world of communication to Babak (Hourcade, Huer, & Parette, 1997).
• promote heterogeneous grouping (untracking) to create more opportunities for minority children and children with disabilities (Smith, Gilmore, Goldman, & McDermott, 1993). Our school has a community integration project in place where typically developing preschoolers join the program on a selected basis.
• infuse classrooms with what is culturally important to students in order to make learning meaningful and relevant (Smith, Gilmore, Goldman, & McDermott, 1993).
• enlist peer buddies as role models in special education classes. Be certain to include representatives from several cultures (Reid & Tanaka, 1997).
• arrange sensitivity training for school personnel so they can recognize their own cultural identities and values. In this way, staff can see how these views may be shaping their present professional beliefs when dealing with a culturally diverse class (Hourcade, Parette, & Huer, 1997).
• select staff development opportunities that are results-driven so that there is accountability (Sparks, 1997).

Solution #2

As a school administrator, I will ensure that Babak is administered the appropriate tests under optimum testing conditions.

Intervention(s) and rationale: In order to help these minority parents have more confidence in the school and school practices/procedures, school staff will use their expertise and sensitivity during testing for his triennial review. The school should:

• administer a dual language assessment to determine language dominance (Hanson
  & Lynch, 1995).
• test with a bilingual-bicultural interpreter present or a bilingual psychologist to make Babak feel more comfortable and to highlight the subtle nuances of language (Hanson & Lynch, 1995).
• use nonverbal tests to circumvent the language issue. This can be done for cognitive testing as well as for evaluations in the areas of occupational therapy and physical therapy (Hanson & Lynch, 1995).
• inform parents when tests are being given and of results (Bailey & Winton, 1997).

Solution #3

As a school administrator, I will ensure that every effort is made to involve the parents in the school and in all areas of decision making for Babak.

Intervention(s) and rationale: In order to help these minority parents have more confidence in the school and school practices/procedures, school staff will use their expertise and sensitivity in working with the parents. The school should:

• communicate with the parents in their native language both verbally and in writing. What may appear to be a lack of home cooperation may actually be a problem in communication (Davidson, 1996).
• continue home visits by the staff (preschool teacher, teacher assistant, social worker) to coordinate efforts and build trust (González, 1997).
• make parents partners in the evaluation process by collecting common data and exchanging information via a daily notebook that goes between home and school (Felber, 1997).
• use siblings as interpreters to further involve the family (Cramer, Erzkus, & Mayweather, 1997).
• have parents sign a form exempting Babak from having pictures taken of him at school. Therefore, Babak will not have to stay home on those days (Bailey & Winton, 1997).
  invite parents to accompany Babak on field trips to eliminate the concern that he will get lost or injured (Bailey & Winton, 1997).
• encourage the parents to visit special education programs at other schools for which Babak may become eligible. The preschool teacher could visit with the parents to explain the different programs and give moral support (Bailey & Winton, 1997).
• listen carefully to parents and ask them questions about their child and about their culture to gain insight and develop rapport (Hoerr, 1997).

Solution #4

As a school administrator, I will ensure that every effort will be made to involve the community as resources for the parents.

Intervention(s) and rationale: In order to help these minority parents have more confidence in the school and school practices/procedures, school staff will use their expertise and sensitivity to enlist community support for these minority parents. The school should:

• put the parents in touch with other Iranian parents of special education students to make them feel they are not alone (Hanson & Lynch, 1995).
• put the parents in touch with other parents whose children have similar disabilities to give additional support and share expertise (Felber, 1997).
• encourage parents to bring a friend or relative of the same cultural background to attend meetings and conferences. Parents might not be as reluctant to come to the school if the situation appeared less threatening (Bailey & Winton, 1997).
• recommend an Iranian doctor to perform Babak's physical examination for the triennial evaluation. If necessary, he/she will make a referral to the appropriate specialist (Hanson & Lynch, 1995).
  

Results

Solution #1: The school staff kept seeking new strategies to increase/maintain Babak's skills as stated in his current IEP. They were sensitive to cultural issues when dealing with Babak and other minority and language minority children. The teacher used heterogeneous grouping to provide language and behavioral role models, enlisted peer buddies to provide additional support, tried assistive technology (Cheaptalk) and signing to aid Babak in communication, and made learning meaningful and relevant by celebrating students' cultural traditions. In spite of all of these interventions, Babak did not appear to be making measurable gains in any of the areas stated in his IEP. Babak started to have seizures which became an additional concern for the staff.

Solution #2: Appropriate tests were administered under optimum conditions. The parents were informed when tests were being given. Babak was given many tests, both educational and psychological, by the school psychologist, his teacher, and the speech/language therapist, physical therapist, and occupational therapist. Both verbal and nonverbal tests were used during the evaluation process. An interpreter was present when appropriate. A dual language assessment showed Babak's dominant language was English. The various tests consistently placed Babak in the severe range of cognitive functioning. This information was shared with Babak's mother in a follow-up conference with the psychologist, an interpreter, and me.

Solution #3: The staff made every effort to promote parent involvement. All important oral and written communications were translated into Farsi. Using a notebook that went back and forth between school and home, much information regarding Babak's daily activities were conveyed. Mrs. K. collected data when asked and followed through on the suggestions of teachers and therapists. The teacher and her assistant continued to make home visits as did the school social worker as is required for triennial evaluations. Either Babak's sister or an interpreter from the school system attended home visits with school staff and the mother. Mrs. K. went on several field trips with the class. Both mother and son seemed to enjoy the experience. Mrs. K. sent Babak to school when class pictures were being taken, but signed a form excluding her child. Teachers and therapists practiced active listening and accompanied the mother to other schools and programs that might meet Babak's needs pending the decision of the eligibility committee. The father, although invited, had not participated in any of the school's activities or meetings up until this point.

Solution #4: Efforts were made to involve the community as resources for the parents. The school social worker was able to put the mother in touch with other Iranian parents of special children in addition to several support groups. One of these mothers offered to accompany Babak's mother to the eligibility committee meeting. The name of an Iranian physician was given to the mother and she followed through by allowing him to complete the recommended medical evaluation. Because of his concerns about Babak's seizures, muscle weakness, drooling, and decreased cognitive ability, he made a referral to Johns Hopkins' Kennedy Krieger Institute. Babak saw many specialists at Johns Hopkins including neurologists and geneticists. Their diagnosis was organic brain syndrome, a progressive, degenerative disease that causes diminished functioning in all areas. It was eventually fatal. Both Mrs. K. and I cried when she shared this news with me.

I attended the eligibility committee meeting along with the mother, the mother's friend, the school psychologist, and the father. After all the testing and pertinent data were reviewed, Babak was given the "multiply handicapped" label. He would be attending one of the school system's centers for children with severe disabilities. In the meantime, Babak would be receiving homebound services until his seizures were under control and his condition stabilized. At the end of the meeting, the mother gave me a hug and the father shook my hand and thanked me. This was the first time I had seen him in the three years Babak had attended our school.

Implications

This was, in some respects, a sad ending . However, I felt the family had come to know that we, as a school family, cared very much about Babak. What started out to be the focus of a project truly became an emotional experience for all involved.

Educationally, we found there were ways to sort out the issues of dual language, cognitive ability, medical diagnosis, and academic programming when dealing with Babak. In my opinion, the eligibility committee was sensitive and fair in its placement decision.

The human and cultural issues were more complex. I found it was very important for me to take the extra time to "do my homework" and learn about the family's culture. It was equally important for me to remember not to make generalizations and that there were individual differences among people of any cultural group. With a new insight and understanding, I felt I became a more effective communicator and, thus, was able to make that very important human connection.

The school staff and this Iranian family developed a strong bond, a sense of trust, and a special closeness that did not seem possible before the interventions were implemented. I am certain this study will serve as a model for others at our school as we deal more and more with the subject of culture and special education.

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