Theo

Theo is a young man in his early 20's with autism who is attending community college, working part-time, and living in his own apartment. His journey toward this successful outcome involved times when his parents doubted whether the public school was the best place to educate him. They explored other options but ultimately realized that the public school option, though lacking some of the things they wanted for him, was more than adequate to meet his needs. Their story also involves delays in getting Theo properly understood and diagnosed.

Child/Family Background Information

At age 18 months, Theo was not talking. He was able to make a few signs to express himself. Theo began receiving Early Intervention (EI) services because of his speech delays. But his parents, Veronica and Kostas, found that getting these services was not easy. Veronica turned to a family member who was a pediatrician herself, to help convince Theo’s pediatrician to make the referral. At the time, Veronica was pregnant with her second child and almost constantly nauseous with severe vomiting. Her ability to do anything beyond basic caretaking for Theo was limited. The EI team worked on his speech delay for several months but never expressed broader concerns about Theo’s development. Veronica and Kostas had a sense that he was delayed in other areas. But other family stressors demanded their full attention. Kostas’s father was diagnosed with cancer in the same month that their second child was born. Looking back at that time, Veronica explained: “Theo looked delayed, but we had so many other things going on that we couldn't really handle it at that point.” And no professionals (EI, pediatrician) suggested that there's more going on than a speech articulation delay and we should get him evaluated. Veronica said, “We dropped the ball, but I think a lot of other people dropped the ball too.” Veronica was a bit hard on herself when she added, “We were in denial” about Theo’s autism diagnosis. Many parents describe themselves in this negative way, but it is more helpful and realistic to recognize that coming to terms with having a child with a disability is not a single moment in time. Rather, it involves a process of grappling with what a disability means for your child and family. It can take time to get to a place of acceptance - whatever that means to a given family - of a new, confusing, and overwhelming diagnosis such as autism.

Preschool Placement

Because of Theo’s speech delay, EI professionals referred him to his public school’s integrated preschool program. He spent 2 ½ hours a day in the regular classroom there. The preschool had other classrooms to serve children with different disabilities, but Theo was not thought to need one of these programs at the time. Some months later, Veronica and Kostas observed their younger child doing things that Theo never did at that age. They realized that something more was wrong with his development. They asked the school to evaluate him and also sought a private neuropsychological evaluation. Veronica appreciated that when this neuropsychologist diagnosed him with autism, she did so “in such a gentle and caring manner…She was a real advocate for us and Theo.” The testing resulted in Theo attending preschool all day, with half the day in the regular, integrated classroom and half in the autism classroom. “Once we got the diagnosis, and once he started getting ABA therapy, he made incredible progress. It was remarkable how quickly he learned things using that model.” Theo developed a nice relationship with one of his teachers in the autism classroom, who began doing ABA sessions with him at home when school was out for the summer. These services were part of his IEP. “She was phenomenal. Within a week, he was doing things that I hadn't seen him do before.” Veronica talked about the challenges that many parents have following through with ABA providers’ recommendations. “They would come and talk about how to structure things at home, how to help Theo at home…I’ll be honest, it was really hard for me to follow through. I did the best I could!” Often these recommendations can be time-consuming and effortful, and difficult for busy parents to follow. Professionals may underestimate the extent of training and coaching that parents need in order to carry out their recommendations effectively and consistently.

Elementary School Placement

Theo’s preschool team knew that his local elementary school would not offer enough support for his needs for Kindergarten. His school district had two other elementary schools that offered separate programs for children with autism: Program A, for children with fewer support needs, and Program B, for students requiring more intensive support. The school viewed Theo as a better fit for the more intensive program, while Veronica and Kostas preferred the other one. “We had a big fight with the school system about where to send him.” His parents’ main objection was the lack of an appropriate peer group. Most of the children in Program B were nonverbal and had significant behavior and learning/cognitive challenges, whereas Theo did not. Testing showed that Theo was quite bright and intellectually capable. The school tried to make a case for Program B because it offered more 1:1 support, which they thought he needed. They preferred him to start there and consider moving him to Program A in a few years if all went well. It felt to Veronica like the school district was “trying to talk me out of Program A,” and she tried to figure out why. She had dinner with parents from Program B to learn more about it, and to learn the ‘politics’ within the district. Most parents reported being unhappy with the quality of Program B for various reasons. She got the sense that “the staff [prefer] to work with the higher functioning kids. And Theo would have been the higher functioning kid that would have been easy for them at that program.” However, at Program A, he might need a bit more than the typical child there and create more of a ‘burden’ for staff. Veronica learned from the parents that the district wanted Program A to be more exclusively for students then described as Aspergers, with very low support needs. Theo was somewhere in between. His parents were ultimately successful at securing Program A as a result of their strong advocacy during team meetings. The law was also on their side: the requirement for children to be educated in the Least Restrictive Environment supported their case. Veronica explained that “at the time, it felt agonizing. But I really think we made the right decision. It turned out to be a really good fit.”

Limitations of the Placement: Considering an Out-of-District Private Day School

Around 3rd grade, Theo’s parents had another neuropsychological evaluation as part of his routine care. They preferred having their own private evaluation in advance of the school district’s mandatory multi-disciplinary evaluation that occurs every 3 years. This neuropsychologist raised concerns about Theo’s ability to learn in a large classroom environment because it might be too distracting for him. Veronica and Kostas shared the report with the school district and mentioned the recommendation for small group learning. The school reminded them that Program B could provide this more easily than Program A. His parents still felt strongly that Program B was not a good fit. They began to wonder if the school district had a program that could meet Theo’s needs. They suggested to the school district that they might have to seek an alternative school if the public school could not make this accommodation. Veronica started to research local private schools to see if they had the right program for Theo. She visited three schools, two that were special education private schools, and one was a more traditional private school but not certified by the state for special education. Each school she toured had strengths and things she liked, and other aspects that did not measure up to what the public school offered. For example, she liked one school that had 4 children in each classroom who were grouped by academic ability. If students had uneven profiles, they could be placed in a higher level math group and a lower level English class. A major downside was that there were no neurotypical peers. Plus, Veronica found the physical environment of one school to be unappealing: It was dark and smelled musty and moldy. Shades were drawn in classrooms, perhaps to keep students from getting distracted by looking out the windows. At another school, she observed a student wandering aimlessly around the building, which concerned her. The third school was less structured than what Theo needed. “When I asked what they would do if he needed more academic support, they told me I’d have to hire a tutor!” She felt it was outrageous to pay for a tutor in addition to private school tuition. It reminded her that private schools are not legally required to follow IEPs as public schools are.

How Theo’s Parents Made the Decision

After this search process, Veronica and Kostas were leaning toward keeping Theo at his public school program. An important factor was the cost of private school tuition and the burden of transporting him there. They also realized that “we would have had a big legal battle with the school system to get them to pay for it, and we were told the best outcome was to get them to pay half.” Veronica also knew the school would not transport him: “Here I am, eight years into raising a kid with autism. My husband works really long hours, so I would have spent 2-3 hours of my day driving him back and forth to school…I know people who did that, but they had a grandparent living with them or only had one child. And I had 2 kids and my work to manage.” There was one incident that helped shift her back toward the positive aspects of Theo’s public school program. “I remember the exact moment when I thought, ‘Theo is staying.’” She described that during 3rd grade, he was in the general education classroom with a floating aide for most of the day, and pulled out for some IEP services a few times a day. “One day, parents were invited to see their child’s history presentation. Theo did this whole project about Ben Franklin. He’s dressed up as Ben Franklin with this great wig and gold glasses. Theo is talking to the classroom as if he is Ben Franklin. And I just remember sitting there and thinking, this is as good as it gets…I didn't see anything better than that at the schools I had gone to visit.” It helped them resolve their disappointments in his program as they came to better appreciate its strengths. This experience confirmed Veronica and Kostas’ decision. It made sense emotionally and practically. The public school program was only 3 miles away, despite it not being his neighborhood school, 1 mile away, where their neurotypical child went. Busing was provided. He had several close friends in this program, and Veronica realized that these long-term friendships were not easily replaced. Another positive development occurred when the school agreed to her request for small group learning opportunities with appropriate peers. The ‘outside expert,’ the neuropsychologist’s recommendation for this helped make it happen. The school identified other students who could also benefit from small group learning. It’s a wonderful example of the school system stepping up when the need arises and circumstances allow it (e.g., funding is available, the right peer group exists). Veronica appreciated that “they did something outside of the model of what they usually do.” Though the process of making this decision ended well, Veronica described how extremely stressed she was during this year: “It took me so much time to visit these schools and figure all of this out. I couldn't even visit one school unless we applied first. It was an enormous investment of time, but it had to be done for Theo’s sake.”

Middle School and High School Placements

Theo benefited from small group instruction during 4th and 5th grade. He had also started a trial of medication to improve his attention, which worked well for him. By the time he was ready to transition to middle school, Theo didn’t need as much support from the floating aide in order to function in a general education classroom. He also no longer required the small group setting in order to learn. Veronica was proud to report that “they set him up for success in middle school. He really thrived there.” Veronica believes that the support they offered him during 4th and 5th grade helped him manage the demands of middle school, such as transitioning from one classroom to another throughout the day. She found it interesting that her younger, neurotypical child struggled more with the transition to middle school than Theo did. Near the end of 8th grade, the family was faced again with the decision about what would be best for Theo for high school. One option was the local public high school in general education classrooms, just as he did for middle school. Although Theo was bright and capable, his parents were concerned about the high school’s reputation of being high-pressure. They thought he could handle the academic demands but were concerned he would not thrive. In middle school, Theo had an academic support block in his schedule where he got all of his homework done every day. Veronica recalled, “I loved that he completed his homework independently, without bringing any of it home. That would not have been possible in high school.” Theo and his parents made the decision for him to attend a local vocational technical high school instead of the public school. The joint emphasis on academics and sampling different career options appealed to them. During his freshman year, Theo had identified horticulture as his area of study. He loved growing plants and herbs at home and enjoyed the prospect of a career in this area. Overall, this high school worked out well for him. He was a model student and earned many academic awards. The downside was that he was isolated socially, as his middle school friends went to different high schools, and he did not make many new friends at his new school.

Post-High School

Theo and his parents decided he was not ready to attend college after high school. Instead, they identified a 2-year residential internship program for young adults with autism and other disabilities that prepared young adults to live independently. Theo enjoyed this program, where he attended a few college classes, worked part-time, and learned to live with roommates and on his own for the first time. After this program ended, Theo returned to live at his parents’ home, take classes at a local community college, and work part-time. He does not drive, but he has learned to use public transportation to get to school and work. After a period of time, Theo became eligible for low-income housing in his town, and is thriving as he navigates his adult life. Theo’s goal is to get a job in his chosen field once he completes college.

Advice for Other Parents

Veronica encourages parents to fully research the options that the public school offers your child. “Keep an open mind, but be skeptical too.” She credits her behind-the-scenes learning, especially talking with parents of children in both autism programs, as key to weighing Theo’s options. She better understood factors that might have contributed to the school’s recommendation. Veronica added, “it also helped me to not personalize the pressures they put on you as a parent.” Her research and talking with other parents also “helped us frame our arguments when we fought for the elementary school program we wanted for Theo.” She also came to realize that every school has their strengths and limitations. “It’s easy to notice what is not working at your child’s school and take for granted what is good about it. But every school Theo attended had pros and cons. You have to figure out what your priorities are for your child and do what’s best for them.”