Kevin is a 5-year-old who has been diagnosed with fragile X syndrome and autism. He is the youngest of Max and Beverly’s four children, and they became concerned about his development during his first year. They noticed that Kevin was much slower meeting his milestones than their other three children were. Their third child also has FXS so Max and Beverly were acquainted with developmental delays, but Kevin has developed much differently than his brother. For example, Kevin is generally happy, but he has a number of unusual behaviors. When he plays with his favorite toys, he shakes and turns them and giggles, keeping to himself rather than playing with others. Kevin seldom interacts with other children except to provoke a response; he appears to enjoy both positive (laughter) and negative (crying) reactions. For instance, he occasionally swipes a toy out of his brother’s hands, not because he wants to play with it, but because his brother becomes agitated and screams at him. Kevin usually just drops the toy on the floor as he runs away giggling. He becomes preoccupied with various toys and repeats the same activity many times each day. His repetitive behaviors, such as playing with spinning objects and moving his fingers across his line of vision, can absorb his attention completely. His latest past time is pressing the buttons on musical books. Each time he presses a button, he smiles, but he won’t let anyone else read with him or touch the book. Although Kevin does not respond much to affection from others (hugs, kisses), he occasionally expresses affection toward his mom in his own way— by sitting next to her on the couch, snuggling up to her and rubbing her forearm.

Kevin began attending an inclusive preschool when he was two years old. This class included 15 children, some with special needs. He was in this classroom for about a year until a new teacher took over. Kevin did not respond well to this change, and his parents felt that the new teacher did not communicate as well with him. Several months before, they had hired a behavioral consultant to work with both Kevin and his brother in the afternoons using the discrete trial method (an intensive one-on-one instructional method that is used to teach a variety of skills). They decided to try increasing Kevin’s discrete trial hours at home rather than sending him back to the preschool.

Discrete trial instruction helped Kevin learn some new skills, but his parents soon realized that he was not improving much in the area of communication. After nine months of this instruction, Kevin’s ability to sit at a table and attend to an adult had greatly improved. In addition, he learned to do some simple visual matching tasks. Kevin learned the meaning of a few words, such as ball, shoe and door; however, he still could not generalize these things to daily life. Because he was nonverbal, he had no means of communicating his needs adequately. Knowing that Kevin needed something more, his parents enrolled him in a new preschool that put special emphasis on visual communication for children with disabilities. Kevin subsequently made significant progress in this preschool.

At first the new school taught Kevin to communicate using objects, and then moved to a picture communication system. For instance, Kevin was able to request the snack he wanted at school by handing the teacher the corresponding picture. His parents began using visual cues at home to help him understand what they expected him to do. For example, Kevin’s parents brought him his washcloth when it is time for his bath. Otherwise, he didn’t understand what they wanted him to do and tantrumed if they try to pull him away from the TV.

Kevin is easily upset by change, so his parents try to keep life as predictable as possible. When he becomes frustrated or anxious his behavior frequently escalates into hand-biting, throwing objects, and pinching others. This is a major concern for Kevin’s parents, along with his repetitive behavior, difficulty focusing, and unpredictable responses to noise. Experience has taught them that for Kevin to learn, his behavior has to be managed carefully. As a preschooler there was a long period of trial and error before they figured out what type of environment worked best for him. Consequently, they were thorough and deliberate in preparing for their son’s transition into kindergarten.

Beverly brought up planning with Kevin’s preschool teacher in January. His teacher explained that the transition process would include a re-evaluation by the school (speech/language, occupational therapy, cognitive testing, and educational testing) to determine Kevin’s eligibility for services and assess his needs and strengths. In June, they would write a new individualized education plan (IEP) for Kevin and decide on his placement for kindergarten. In the meantime, she suggested that Beverly observe in some potential classrooms for Kevin so that she would be better prepared to discuss placement issues at the IEP meeting.

In June, the team, including Max and Beverly, met to finalize his individual education plan (IEP). As expected, Kevin was recommended for continued services. The team selected the Multi-handicapped label for his eligibility since Kevin demonstrated significant delays in his development, speech language impairment, and autistic-like features. At the IEP meeting, Kevin’s particular needs were discussed, and the concerns of both his parents and the school staff regarding the best learning environment for him were considered. Beverly voiced her opinion that Kevin’s needs included a low student-teacher ratio and a highly structured classroom that used visual supports to communicate the class routine. She had observed one multi-handicapped class that she thought would provide those supports. Jenna, the current teacher in the class, had completed training on the structured teaching model at Division TEACCH at UNC and incorporated the model into her classroom to support her students with autism and severe communication disorders.

Kevin’s adjustment to his kindergarten class took some time. The new class was more individualized and Kevin seemed confused by the frequent transitions. He became easily frustrated with any changes in routine and was overly anxious when asked to complete simple work tasks. His frustration and anxiety typically transformed into temper tantrums. During these tantrums, he banged his head on the wall and bit his hand. During the first week of school he threw materials across the room whenever his teacher worked with him. He also pulled other students’ hair and his parents became very worried about his aggressive behavior.

Over the next few months, Kevin became more familiar with the class routine and gradually his behavior improved. Kevin’s teacher noted that he still occasionally refuses to do his work and sometimes he hand flaps, rocks, and makes odd noises. Kevin appears to have "obsessions" (i.e., playing with keys, or touching certain types of cloth material) and will entertain himself this way for hours if not redirected. He has difficulty concentrating on tasks and occasionally looks around with no apparent focus on anyone or anything. She also reported that he was easily upset by loud noises at school and that he covered his ears when people talked too loudly around him.

Kevin receives both speech and occupational therapy at school for approximately one hour per week. His therapists take him from his classroom to the therapy room to work with him. At the beginning of the year, Kevin tantrumed each time they came to work with him, so they decided to collaborate with Kevin’s teacher to come up with a solution. His teacher helped by taking pictures of each therapist and incorporating them into Kevin’s picture schedule. This way Kevin always knew what to expect. In addition, she told them what motivators worked best for Kevin and suggested that they establish a "work-then play" routine with him. Now Kevin takes a few of his favorite toys from the classroom to his therapy sessions, and they alternate between work and play with his toys. His teacher and therapists have recently started using a timer during work sessions to signal when his work time is finished. Many of Kevin’s therapy activities are also incorporated into his classroom routine. For instance, his OT recently suggested giving Kevin a wooden rocker bench to sit on during circle time. He is now able to sit on the bench for about 5 minutes, whereas before the teacher had to hold him on her lap.

Despite the challenges Kevin faces, his parents are relieved that he is adapting to school, and are pleased with his progress. They are hopeful that the remainder of the year will be productive for their son.