This was my daughter’s way of telling me she needed to use the potty. She was 4 1/2 years old, couldn’t speak English, newly adopted and blind. The technical term for her condition is bilateral anophthalmia—simply put, she was born without eyes.
We were at the first of what will surely be many individualized education plan (IEP) meetings, where she’d patiently engaged the team of adults gathered to help plan out the goals and supports for her first year of formal education.
We toddled down the long, stark hallway to the ladies room. As fate would have it, the woman who’d essentially led the IEP meeting was also there. “Can I speak to you?” she said. “I just wanted to commend you for what you’re doing for your daughter. It will help other children too.”
We’d just finished the evaluation portion of the meeting and were taking a break so the educators, social worker, teacher of the visually impaired, psychologist and various therapists could combine their notes and recommendations into a solid plan for my little girl’s first year of preschool. As a former first- and second-grade teacher, I know all too well how critical early childhood education is to a child’s overall development and future success.
I was stunned to learn that my daughter was only being offered a half day of preschool. Three hours, really: 7:30 a.m. to 10:30 a.m. Yes, a child with one of the most significant barriers to learning was offered just three hours a day in a school setting. Not three hours of instruction—consider play time, bathroom breaks, transition time, meals or snacks—but three hours to be physically present at school.
So, I pushed back. I insisted that they cobble together a full day. And they found a way to do it.
“You’re right to fight for her to have full-day preschool. They offer it to the hearing-impaired children, but not the visually impaired.”
Had I heard her correctly? What?! How is that possible? How is it that one group of disabled children is treated differently from another? Have we really placed a premium on certain disabilities?
She went on to encourage me to “keep fighting” and offered to be of any assistance she could.
Fighting for Others
Our educational journey began here in Chicago with many emails and phone calls with the district’s Office of Diverse Learner Supports and Services (ODLSS). At their recommendation, I visited the school then designated for visually impaired kids from our neighborhood.
We live on Chicago’s South Side. The school, however, was located at the westernmost edge of the city, just a stone’s throw from the next town over, Oak Park, roughly 16 miles from our home. The distance was bad enough, but coupled with traffic, inclement weather or any number of variables, what would normally be a 20-minute ride on a clear day could easily double or triple. (Later, a second school was recommended. It too was far—19 miles from our home, 45 minutes in the car, no matter the route.)
What added insult to injury was the apparent lack of inclusive instruction with typically developing children. Both of the schools offered a self-contained class of disabled kids. It reminded me of decades ago, when the kids who received special education services were labeled, separated and ostracized.
I sought support from Equip for Equality, a nonprofit organization that advances the civil and human rights of people with disabilities here in Illinois. They helped me understand procedures as well as our rights.
I also joined Vision Parents Empowered of Chicagoland, a support group of parents with lots of resources, information and experience. Both were invaluable. Our journey helped another family push for and obtain full-day preschool in Chicago Public Schools (CPS) for their visually impaired daughter. And no doubt others will follow.
The mantra I’ve heard in CPS is “blindness is a low-incident disability.” I’ve heard it so many times that I’m convinced it’s in a script somewhere.
Regardless of the relative infrequency of her condition compared to the population, my daughter is still entitled to an education. Not just an education but a high-quality one, with differentiated instruction that meets her at all of her highs (there are many!) and her lows alike. A rich education layered with art and music, physical education and play, targeted rigor and high expectations.
After three school visits and two IEPs with wildly conflicting recommendations (the initial one conducted by the district and another performed by the recommended school), I had a decision to make. The district IEP recommended 61 to 100 percent of my daughter’s time be in a general education classroom, while the school recommended 100 percent special education. I couldn’t get excited about a tiny, self-contained class, with limited opportunity to engage, play with, learn from and teach other children. She needed more than that.
Ultimately, I placed her out of the district in a CPS-affiliated program at The Chicago Lighthouse—an inclusive preschool program where she was one of six visually impaired students in a class of 20 typically developing children.
She received every service she needed. She made friends, learned English, figured out how to navigate her new world, and taught her classmates that blind kids are just like them. She thrived!
The downside was that I paid tuition. The upside was that I could.
But what about all of the families that don’t have the option? The families who don’t know that they can push back and obtain the services their kids deserve. The families who don’t know to insist upon full-day preschool or inclusive classrooms or additional minutes of therapies? The families who cannot hire lawyers and press their cases. What about them? What about their kids? They too deserve equity and access. They too deserve the best possible education. I believe that those of us with the ability to fight for those kids must do so.
This fall, my daughter starts kindergarten. Once again we have embarked upon the CPS journey and I remain hopeful that we’ll land at the right school, in an inclusive classroom (the district has assured me) where she can continue her amazing progress. And if all else fails, I’ll fight for her again—and for every child like her.