In the decades after World War II, families in America and other countries whose newborns had Down syndrome were told it was in everyone’s best interests that the child be placed in an institution immediately, usually never to be seen by the family again. 

Warehoused, neglected and often abused, frequently for the duration of their lives, these people did not develop to their full potential, but not because they had Down syndrome. Institutionalization was a self-fulfilling prophecy of low expectations. 

Then, in 1964, a longitudinal study compared a group of infants with Down syndrome who were institutionalized to a group who were raised at home. Eight years later, findings showed that the children who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.”  

That study was one of the early steps in rethinking what it means to have Down syndrome and reconsidering the wholesale institutionalization of this population. 

(Now is a good time to grab a paper and pencil to write down some of the many educational acronyms I’m about to spell out. Ready? OK.) 

In 1975, Congress passed what is now known as the Individuals with Disabilities Education Act (IDEA), requiring public schools to no longer restrict children with intellectual and/or physical disabilities from attending. 

 IDEA also requires public schools to provide a “free, appropriate public education” (FAPE) that includes five provisions: appropriate evaluation, individualized education plan (IEP), least restrictive environment, parental participation and procedural safeguards. 

In the decades since, as children with intellectual disabilities now mostly remain with their birth families (or are adopted by other families), and early interventions in speech, physical and occupational therapies have become commonplace, previous assumptions of what a Down syndrome diagnosis means have been decimated. 

And yet, as a mother of a child with Down syndrome, I am not always confident that I am providing my daughter, Lyra, with the education she needs. In hindsight, her first three years of life — when I was panicked about her correctly learning how to walk, talk and use her hands — seem like a cakewalk. 

Shortly after her third birthday, Lyra became a preschooler at Akron Public Schools’ Early Learning Program, which enrolls kids with and without disabilities. For three years, Lyra was in a classroom with fewer than 10 students staffed by several adults, and received regular therapies along with academic instruction. 

 At age 6, Lyra began kindergarten in a general education classroom at Case Elementary. Her IEP called for her to work with an intervention specialist (what we used to call a special ed teacher). That educational structure is called “cross category,” or “cross-cat” for short, as the children are instructed in general education and special education settings. 

Sometimes Lyra’s intervention specialist would “push in” and provide supplementary instruction to Lyra in the classroom. Other times Lyra would get “pulled out” and taken to her intervention specialist’s room for lessons. 

Still, kindergarten in a classroom with one teacher and more than 20 students, many of whom had never attended preschool, was challenging. Lyra repeated kindergarten the next year and for the first time an aide was assigned to help her stay on task. 

That seemed to be just what Lyra needed. The results of standardized tests conducted just after winter break of her second kindergarten year indicated Lyra was on track for the first grade the next fall. 

Two months later, COVID hit and Akron Public Schools, like many urban school districts, went 100% remote for 12 months. 

 Last month, testing of K-12 students revealed that children nationwide regressed in math and reading during the pandemic. This is regardless of whether a child was in states like Texas or Florida, where public schools were mandated to reopen early in the pandemic, or in states like Ohio where the districts were allowed to remain closed for a year or more if they so chose. 

That said, children on IEPs lost more ground than their friends without an IEP.  Trying to have my then 8-year-old with an intellectual disability learn via a computer screen was absolute folly. 

 Lyra’s academic work ethic also regressed, which became readily apparent when Akron reopens its school buildings in March 2021. 

Thus, at the recommendation of her school team, we agreed to have Lyra attend second grade in a multiple disability (MD) classroom (formerly called special-ed classrooms). MD classrooms do not follow the same Ohio curriculum as the general education classrooms and the longer a child is in an MD classroom, the more difficult it becomes for her to switch back. 

Lyra’s experience was mixed. She relearned academics, and how to work in class and follow a structured day. But she was also one of the highest performers in a class where she was the youngest student. That is not a good thing. I felt as though I had failed my daughter. 

 Last spring, I asked Lyra’s IEP team about Akron Public Schools’ new SAIL program, which stands for Students Adapted Individualized Learning, and if she met the criteria for placement. SAIL students must be able to work in a general education classroom without being disruptive, which Lyra is. 

Developed by Tammy Brady, the district’s special education director, SAIL is designed for the few students whose abilities fall betwixt and between MD classroom and cross-cat placements. 

 Currently, APS has five elementary and three middle school buildings with SAIL, serving children from across the district. Each elementary building has two SAIL classrooms divided by grades: one for kindergarten through second grade, the other for third through fifth grade. Each class can have a maximum of 10 students. 

SAIL students attend a general education classroom, as well as specials (gym, art, music) with neurotypical peers, and return to their SAIL classroom with its dedicated intervention specialist for additional instruction. Some students require an aid, others do not. The time spent in the general education classrooms provides positive language and behavior modeling, along with academic instruction. 

 This fall, Lyra was placed in a third- through fifth-grade SAIL classroom at Resnik. At the end of each school day, her SAIL teacher sends an email telling us about Lyra’s day. For the first month, I teared up every time I read these daily reports. 

Her teacher regularly comments on how hard Lyra is working, how well she is doing in math (she’s working with numbers in the thousands) and reading (she nails the third grade vocabulary). We also hear how well she’s interacting with other students in her general education and SAIL classrooms. 

With the addition of SAIL classrooms, APS is more fully inline with the federal requirements of IDEA. Though a program still in its infancy, SAIL is showing great promise and is something the district can be proud of having developed. 

As a society, we’ve come a long way since the days of my childhood, when I never saw people with intellectual or physical disabilities in the public schools I attended. By simply allowing beloved family members with intellectual disabilities to live at home and providing them with an appropriate education, today many of these people grow up to have full, and often independent, lives. As it should be. 

This column was first published in the Akron Beacon Journal on Sunday, November 13, 2022.

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