March 11, 2016
Background: Almost one year ago, Minneapolis’s once highly touted Citywide Autism Program began to publicly unravel. On the heels of a special ed audit done by consultants from the District Management Council (DMC), Minneapolis’s special ed department was upended, with longtime administrators pushed out and new, perhaps more compliant ones brought in. In the name of “inclusion,” citywide programming is being cut. I am writing a series of posts about this; access the first one here.
What follows is one mother’s story of how the Citywide Autism Program has served her child. Esther Oledad, featured here, speaks mostly Spanish, and so our conversation was facilitated by Oledad’s fellow Citywide Autism Program parent, and fluent Spanish speaker, Jenny Austin. Austin and Oledad are members of a parent-created autism support group in Minneapolis called MAPS.
Minneapolis Public Schools parent Esther Oledad remembers the day her five-year old son, Danny, was diagnosed with autism, or “autismo,” in her native Spanish. It was his two-year old check up, which included the usual focus on the boy’s height and weight. But, then, Danny’s doctor asked Esther if he talked at all.
“I told her that he had started to say a few words, but had recently stopped using them,” Esther recalled. She had noticed this at home, but thought maybe Danny was regressing because his little sister had just been born.
The doctor kept observing Danny, and finally asked Esther a direct question: Had she ever heard of autism? Esther said yes. The doctor then pointed out that Danny was flapping his arms, and asked Esther what she thought of that.
“I thought that he was just excited, and that was how he was expressing himself, since he wasn’t talking,” Esther said, but the doctor said that this behavior–of Danny flapping his arms–was a characteristic of autism. So was the fact that he wouldn’t look at the doctor when she tried to talk to him.
“Don’t worry,” the doctor told Esther. “You are an excellent mother. This is not because of something you’ve done.” Still, the thought that her son–her first-born child–might have autism was scary. She didn’t want to accept it, but she did agree to let the doctor call the Minneapolis Public Schools on her behalf, so that the district’s early childhood special ed staff could come out and further observe Danny.
“I wanted to forget what the doctor told me,” Esther says, but when the school district sent a team out to evaluate Danny and, after two visits, the team concluded that Danny did in fact have autism, she realized she couldn’t avoid it any longer.
Oledad says it was even harder for her husband to accept this diagnosis. ” My husband kept saying, ‘Danny is so little! How could they be expecting such milestones from him!” But Oledad dug in, and agreed to in-house therapy for Danny from Minneapolis’s early intervention staff.
That lasted for a few months, until Danny turned 2 and a half. Then, Oledad says she was asked how she would feel about sending him to preschool, so that he could mix with other kids. She remembers thinking, “No! He’s too little,” but came around when Danny’s special ed teacher assured her he would be fine.
And so Danny’s journey through the Minneapolis Public Schools special ed preschool program began.
First, he was sent to an early childhood special ed preschool class at Wilder School, in south Minneapolis. After a few months, Oledad was told Danny needed to attend a new school, because he was almost three years old, and thus “aging out” of Wilder’s program.
Oledad was given two autism-focused preschool options for Danny: Longfellow School, on the far south side of Minneapolis, or Bryn Mawr, on the near north side of the city. (Oledad lives near Lake Street and Nicollet Av, closest to the Wilder site). She chose Longfellow because the school had a dual-immersion program, and, since Danny was only speaking Spanish at home, Oledad wanted him to have the comfort of being around teachers who spoke Spanish.
After one year at Longfellow, the program closed. Oledad then had two new choices to consider for Danny: Bryn Mawr, which was part of the district’s early childhood special ed autism program, and Jefferson School, in Uptown, which was not part of the same program, but did offer Spanish. She chose Jefferson, thinking the language factor was important. It also seemed like a more convenient location for Oledad, who does not drive: “If I needed to get there by bus, it would be easier to get to Jefferson.”
Danny went off to Jefferson, and then the problems started. “I got lots of complaints from his teacher, about his behavior,” Oledad recalls, which surprised her because he was doing well at home, and had done well at Longfellow. But the Jefferson program was not an autism-only site; instead, the preschool class was a “mixed diagnosis” room, where kids with a variety of special ed diagnoses were grouped together.
“My son changed,” Oledad says. “He stopped being excited and happy about going to school, and started displaying signs of being stressed and nervous when I would tell him it was time to go to school.” At school, Oledad learned Danny was throwing himself on the ground, and rolling around; his frustrated teacher admitted she had “no way to get him back up.” The teacher told Oledad she should consider moving Danny to a “specialized autism class.”
As a result, Oledad switched Danny, mid-year, to his fourth school in less than two years, sending him to the Bryn Mawr site. Bryn Mawr is farther from her home and lacks a Spanish language component, but has a bonus Oledad has since learned to appreciate: it is part of the Minneapolis Public Schools’s early childhood special ed autism program, and therefore has a dedicated autism classroom with autism-trained teachers and support staff.
Danny has thrived there, Oledad says. Originally, she chose Jefferson over Bryn Mawr, thinking she could get there faster if Danny needed her. But, she says with an easy smile, she’s never been called to Bryn Mawr because Danny is doing so well there. When there is a scheduled conference, her husband takes time off from work and drops Oledad at the school, and then takes care of their younger daughter while Oledad speaks with Danny’s teachers.
Oledad says she was working at a restaurant when Danny was little, but stopped when she found out he had autism. “My husband told me, ‘I know you want to work, but Danny needs more care, and it’s better if you manage it.” And it’s true. An autism diagnosis comes with a list of recommended, time-consuming interventions, for speech and muscle coordination, for example–and these services occur away from home and school.
“My husband works very hard and supports the family,” Oledad says. She is grateful, she says, because she can now see the benefit of pursuing interventions for Danny. He is five, and starting to talk. And, she says he has an “excellent teacher” at the specialized autism site at Bryn Mawr.
Now, as Danny stands ready to move out of preschool and into kindergarten, his teacher has helped Oledad navigate the headache-inducing world of school choice in Minneapolis. “I got information about this from Minneapolis’s Early Childhood Family Education program,” Oledad says, “but it was overwhelming. I told Danny’s teacher, ‘You know my son and his needs. I would appreciate your help with this.” Originally, Oledad was told she would get a list of schools to choose from, but she says she didn’t want the list; she wanted to rely on Danny’s trusted teacher instead. (Up until this school year, parents say they were given the option–based on input from autism-trained teachers–about where to send their kids, either to the district’s K-12 Citywide Autism Program, or to a community or magnet school.)
Over the phone, and with the help of an interpreter, Oledad and Danny’s preschool teacher filled out Minneapolis’s online school choice card. Fortunately for Oledad, her community school, Lyndale, still has a highly regarded autism program, and so that is where Danny will go this fall.
Oledad says Danny’s teacher never called the program at Lyndale a “Citywide Autism Program” site. Jenny Austin, who helped with our interview, says that autism and special ed teachers in Minneapolis today have been instructed by district administrators not to give families the kind of advice Oledad got, about which site would be best for their children. Parents contend this is part of Minneapolis’s sudden move to “starve out” the citywide program, and shuttle kids to their community schools.
For Oledad, the services she accessed for Danny have been vital, even with the ups and downs of having to switch schools so often. She says she knows a few other children with autism in her community, but she believes their parents have not pursued the kinds of early interventions for them that most autism experts say is essential. Observing these children has left Oledad with a haunting thought:
“What would my son’s future have been, if I hadn’t allowed treatment for him?”
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