Sabine* is a mother of four children currently living in Cambridge, Massachusetts. She was born in Modele, Haiti, a community located three hours from Porte-au-Prince. Haitian Creole is her primary language. In 2003, Sabine and her two older children left Haiti and moved to the Boston area to join her husband. Since arriving, Sabine has had two more children. Maxime, her 5-year-old son, received an autism diagnosis when he was eighteen months old. His younger sister, age 2, is typically developing. Prior to her son Maxime’s diagnosis, Sabine had never heard the word autism. Maxime attends public school.
Living with and loving a child with autism poses many challenges for Sabine. The stresses of raising a child with autism took its toll on Sabine’s marriage. She has separated from her husband. Although he has expressed interest in returning home, Sabine is hesitant to reconcile because he blames her for Maxime’s autism and is too strict with their son.
Sabine describes a typical development for Maxime and recalls him babbling at four months and clapping when the program “Family Feud” was on television. Around the time he turned eighteen months, Maxime’s behavior changed dramatically. He stopped eating and speaking and would sit very still. Sabine thought he was sick and took him to see his pediatrician. The doctor performed a series of tests on Maxime and told her that the results were all normal. He reassured her that his behavior was normal and suggested that she give him ibuprophen. Maxime’s condition did not improve. Sabine was sick about her son’s deteriorating condition and went back that same month to see the doctor. She was in tears when she arrived and told another doctor about his problems. This time the doctor said it might be autism. She did not know what autism was and had many questions for the doctor about its cause and what his prognosis was. As she was leaving the doctor’s office, he mentioned Early Intervention and said he would call her about it.
Sabine works for an outreach program to Haitian families. When Maxime’s autism was diagnosed, Sabine went straight to her director and asked him what he knew about autism. He assured her that it was possible Maxime would speak and suggested that she go to Early Intervention for help.
Maxime began to receive services through Early Intervention when he was two years old. Services included speech and occupational therapy. Sabine does not recall if he received ABA. There were four different teachers working with him. Early Intervention staff came three times a week. Maxime became attached to the Early Intervention staff and cried when they left. He developed play skills and started to attempt to say words. He did use a simple picture exchange system to communicate.
When Maxime turned three, he left Early Intervention and enrolled in a neighborhood public preschool with a classroom for children with ASD. It was a full day program with a summer component. There were limited home services given in English without a translator. This made it very difficult for Sabine to speak with the teachers about her concerns.
Sabine first learned about Massachusetts Advocates for Children (MAC) through a teacher recommendation. She was interested in learning more about her son’s educational rights and contacted MAC staff for help.
Maxime is currently attending a public elementary school in the Boston area and is in a substantially separate classroom with other children with ASD. Prior to MAC’s involvement, Maxime did receive minimal home services without the benefit of interpreters and translators, which made it difficult for Sabine to talk with the home trainers about her concerns. As a result of MAC’s advocacy efforts, Maxime now receives 10 hours a week of home-based services from teaching staff with the assistance of an interpreter who speaks Haitian Creole. Sabine is continuing to work with MAC staff to ensure that he is receiving sufficient services to make necessary progress.
Although Maxime has some language, communication continues to be a challenge. Until recently, communication was limited. Maxime would start to cry and Sabine would bring him his communication book to see what he wanted. It contains 8-10 photos per page and a Velcro strip on the front of the book for picture exchange. Recently, he began repeating what others say and is starting to use three word utterances like “I want bus.” Sabine speaks to him in Haitian Creole and he makes requests in English. Sabine is interested in learning about more advanced types of augmentative and alternative communication and will work with MAC staff to try and acquire a device for her son.
At the end of December 2009, Sabine learned Maxime was chosen by lottery for the Children’s Autism Medicaid Waiver, a program in which MAC played an active role in developing. Beginning in June, Maxime began to receive intensive home-based services through the Waiver in addition to home training provided by the Cambridge Public Schools. Since Haitian Creole is her primary language, Sabine will need to utilize interpreters and translation services through the Waiver Program. MAC will continue to assist her with the Waiver Program.
Sabine hopes that the services provided by Waiver program will help her with Maxime’s toilet training and challenging behaviors. Maxime’s safety continues to be a concern for Sabine. One of the challenges Sabine faces is that Maxime likes to look out the window at night. The window is three stories up. Despite installing locks and blocking doors, Sabine worries that he will fall out of a window or wander away from home.
Sabine appreciates that Maxime is entitled to receive an education. This would not be the case if they lived in Haiti. According to Sabine, opportunities for schooling in Haiti are limited. There is no right to a public education for children. Most schools charge tuition, although some offer discounts. State run schools charge a lower tuition than the private schools but there are not schools in every town. Families in rural areas often send their children away to live with other families so that they can receive a better education but only see their children during vacation. Education was very important to her parents. Sabine attended school until 10th grade and is able to read and write in Haitian Creole.
Teachers in Haiti often use corporal punishment with children who do not obey the rules. Sabine remembers a friend whose son was not well-behaved in school. He was often hit by teachers. His own parents hit him for not doing what he was told to do by the teacher. Only after the mother came to the US did she discover that her son had a learning disability. The mother feels terrible about how her son was treated in school in Haiti.
While growing up, Sabine remembers seeing children who were unable to speak. In Haiti, some believe children with disabilities are possessed by Satan and exorcists are recommended as a possible cure. Others believe Satan caused the illness. When an acquaintance back home learned of her son’s Maxime’s autism diagnosis, Sabine was told to bring him back to Haiti in order to cure him. Sabine does not believe Satan caused her son’s condition. She has no plans to bring him home to Haiti because he was born in the Boston area. Sabine believes that God made Maxime this way.
Sabine recalls a school for students with physical disabilities in Haiti, but nothing for kids who were not able to speak or may have autism. Some children are described as having mental problems but Sabine thinks some of them had autism. For the most part, parents of non-verbal children keep them at home. Sabine does recall one Haitian mother of a child with autism who moved to Florida. Once she arrived in Florida, she was happy to learn that there were schools in Florida for children with ASD.
Sabine is doing all she can to help her son learn and communicate. Still, she worries about him constantly. Sabine said that she has not slept through the night since he was diagnosed.
*The names have been changed to protect the family’s confidentiality.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.