Parent Story 2: “Jackson”

* A single mother of a 9-year-old boy, “Jackson,” with autism shares how she worked with her son’s public school team to negotiate a special education private day school placement.

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Child & Family Background Information

“Jackson” was diagnosed with autism when he was 2-years-old. He attended his local public school with pull-out services and a 1:1 aide to assist him in the general education classroom during his preschool and early elementary school years. This worked for the most part. However, his mother, “Rene” was concerned that he was not making any improvements in his speech or other forms of communication. She brought this up at IEP meetings, parent-teacher conferences, and at other times throughout the year. The school was generally responsive to her concerns, for example, by offering additional individual and small group speech sessions.

After he turned 8, his aggressive behaviors increased at home and school. He would often hit, punch, scratch, and kick his parents, brother, peers, and teachers. Rene felt validated when the school’s data collection showed these behaviors occurring about 100 times per day. As a single mother raising two boys on her own, Rene was having much difficulty keeping her younger son safe from Jackson’s aggression. She was frustrated that home-based services provided by the school were not effective in helping her manage him at home.

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How the Placement Occurred

Rene scheduled observations of her son at school and noticed how often he was sitting in the corner of the classroom and not interacting with anyone. She was informed that he was being separated to prevent him from being aggressive with peers. Her observation was that he was not truly learning or being challenged academically when he was off in the corner. Rene also asked her son’s psychologist to observe Jackson in his school program to determine whether he was better served there or in another setting. Rene discussed in a team meeting her belief that inclusion was not working and suggested a more intensive learning environment. The school district agreed to place Jackson in their substantially separate classroom for children with autism. This occurred for one year, but he showed little progress. His aggression was escalating and his communication skills remained very limited.

A turning point occurred for Rene one day when her family was at a restaurant, and Jackson suddenly threw utensils at a nearby table, barely missing an infant. Rene was mortified by her son’s behavior and desperately tried to explain the situation to this very upset mother – all while Rene attempted to manage Jackson during this stressful moment. She later reflected that all public outings went badly with him, and she could not take her son anywhere in public without great fear of him hurting someone or being disruptive. She worried that without proper intervention, his limited communication skills and aggression would become more challenging as he got older, bigger, and stronger. Rene called a team meeting and requested a private special education school, with the hope that more intensive, specialized teaching methods could make the difference for her son. She was crushed when they did not agree.

Rene relied upon the positive relationships she worked hard to form and maintain with her son’s team. “I had a lot of hard conversations with the school team after I asked for an out-of-district placement, and my relationships with everyone became really tense for a while.” Her approach was to be as honest as possible about how much she was struggling at home. She also had Jackson’s private psychologist write a report about his lack of progress the past few years, using data to back up this claim. The school district initially responded by proposing new services, stating that they wanted to continue to try to serve him. With things deteriorating at home on a daily basis, Rene decided to obtain a lawyer to assist her, and together they informed the team that they were ready to go to hearing. This is when the conversations began to shift. Rene successfully negotiated a private special education day school for Jackson without having to go to hearing. Part of the negotiation involved her offer to have a family member drive Jackson to and from school, rather than ask the school to provide and pay for transportation. Rene thought that this might have made the school more agreeable to the placement.

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Most Challenging Part of Placement

“I sometimes feel isolated and a sense of shame as a parent because my child no longer attends his local neighborhood school. I feel less a part of my community.” Sometimes my other son is sad that his brother no longer goes to the same school as he does.

Benefits of Out-of-District Day Placement

“The new school was transformative!” Rene described that Jackson made more gains in the first month at his new school than he had in his entire life. She attributed this to the experience and expert skills of the clinicians and teachers working with him. For example, after one month at his new school, the speech therapist provided him with an AAC (or augmentative communication) device. The public school thought he was too intellectually impaired to use one. However, Jackson’s skills improved dramatically: “The teachers discovered he could read!” Rene was amazed and thrilled, but also sad. “I realized that we had lost so much time, not knowing how much he knew and was capable of…and also sad to think of how misunderstood Jackson must have felt.” Overall, Rene was relieved to learn that he had more receptive language than anyone ever thought he had, and was excited to see how much he learned in the early months at his new school.

Rene described that family life got a lot better, too, as Jackson’s communication began to take off. “It was great to see that he could tell us what he wanted rather than have a tantrum!”

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Coping with Challenges

Even though Jackson is making improvements, Rene knows they are not ‘out of the woods’ yet. At their most recent IEP meeting, the private day school team members and public school out-of-district coordinator surprised her by raising the question about residential schooling. She does not feel ready for this. She has friends who have had more challenges when their children with autism began puberty, so she has some worries that his aggression will return. But she is willing to wait and see. Although life at home is still challenging, she tries to manage one day at a time and remain hopeful. In the meantime, she receives additional in-home supports to better manage his behaviors.

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Advice for Other Parents

“I wish I could create a path for other parents in this situation. It is so isolating!” Rene also regrets how much luck is involved in this process of navigating the complex educational system. She believes that Jackson was able to obtain this placement because a number of things went right for her. Compared to a few parents she knows, she worked hard to keep her emotions in check and not get angry with school personnel, despite the many times she wanted to. Based on her experience, she advised parents to “try to keep your relationships positive and respectful with your child’s team. This isn’t always easy, and there will be tension along the way. You just have to expect that, but keep the focus on what your child needs.” Rene credited her ability to have the right stance with professionals in meetings, and knowing when to bring an attorney on board. She also regretted how long the process took: “Unfortunately, the system works slowly. Parents have to keep in mind that it can be a long time from the time you think an alternate placement is needed, to the time your child gets there – if your child is lucky enough to get there.”

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