My challenge to educate Sophie began even before she was old enough to attend public school.
When she was 2, I began looking for a preschool/childcare option that would be both safe and enriching. Sophie was the first person with Down syndrome I'd ever met, and in 2003, the year she was born, doctor no longer told you to institutionalize your baby with DS. To the contrary, the advice from all quarters was to put her alongside her typical peers as much as possible. That's called inclusion and depending on the specific circumstances, it's widely considered a good thing for both disabled and non-disabled kids.
Frustrated with a lack of quality among some of the childcare centers I'd visited, I figured I'd go for broke. I called Awakening Seed, a prestigious, expensive private school well-known in Phoenix as the place where progressive, well-educated parents sent their children from an early age.
I was shocked when the owner informed me: "We don't take children with Down syndrome" and then told me to call the state, which offers the services I was looking for. (The state doesn't, by the way.)
From then on, I learned not to take any placement for granted. But that's not to say we didn't have tremendous luck. The Child Development Lab at ASU had never had a child with Down syndrome in its program, as far as I knew, but Sophie was accepted with open arms and thrived there. Yes, it was a challenge as other kids learned to walk, potty trained and stopped using sign language while my child lagged in those areas. But her language and social skills developed quickly and, eventually, Sophie did walk, talk, and go to the bathroom on her own.
Tempe Elementary School District has a fantastic preschool program that mixes special-needs kids with typical peers, and by the end, the staff was telling us that Sophie was one of the brightest kids with Down syndrome they'd ever met.
But their formal recommendation was for her to attend a school in the district with a pull-out program for kids with special needs, rather than our neighborhood school, which Sophie's sister Annabelle already attended.
I held my breath and held my ground. Sophie was enrolled at the neighborhood school. We had a bumpy start. At one of the first meetings with her teachers, therapists, and principal, I complained that the kindergartner-to-adult ratio on the playground at lunch was 100 to 1. Would anybody be able to watch Sophie during the 15-minute lunch recess?
The principal looked up from her BlackBerry long enough to remark that if Sophie couldn't act like a typical kid, we'd need to look for a placement at another school in the district.
I blinked back tears, refrained from using (too many) expletives, went home, and solved the problem my way. If the school wouldn't give Sophie extra help, I would. I got on the phone and started hiring. All that year and well into the next, a series of ASU education students showed up at the school to "volunteer" -- all in Sophie's class. I paid them hourly, under the table.
No one asked questions. It worked. Sophie was safe and able to attend school with her sister and the kids from our neighborhood. On the fourth day of kindergarten, she made a friend, a typical girl named Sarah.
"Sarah's the youngest of four kids," the teacher told me. "I think she's looking to be a big sister. This is good for both of them."
And how. Six years later, Sophie and Sarah still are best friends -- an odd couple, since Sophie is the smallest fifth-grader and Sarah's among the tallest. The girls are inseparable.
Eventually, my makeshift "volunteer" system didn't work anymore. Sophie needed professional help. So when she was in third grade, I hired a lawyer and fought to get her a classroom aide, who worked with Sophie when she needed the help but "pulled back" to assist with other tasks in the classroom and the school when she did not. I'm so glad I did it -- in my mind, at least, that allowed Sophie to be safe at a place that has so much to offer.
The other day, Sophie asked her dad to print the lyrics to the song "Counting Stars," explaining that she and her choir teacher were working on a private musical arrangement. From the front-desk staff to the crossing guards, she has her rituals with everyone -- most importantly, her kindergarten teacher, who six years later still expects Sophie for a daily cuddle and puts lotion on her chapped skin.
That original BlackBerry-obsessed principal eventually retired, replaced by a man I can only describe as my daughter's soul mate. Until recently, when she announced she has a new favorite color, he wore purple to school every Thursday, just to make her smile.
Sophie's elementary school experience hasn't only been about social interactions. We've had some challenges in terms of accommodations and curriculum, but for the most part, she's been included in regular classrooms as much as possible and makes genuine progress on her academic goals.
One thing that's always stunned me is that Sophie takes standardized tests along with her typical peers. For the past three years, she's taken the AIMS test -- albeit with accommodations for breaks and extra time -- but she takes the same test the rest of the kids do.
Every time we have an IEP meeting, I pose the question again, because I'm so befuddled by it. I asked it again last month:
"So Sophie takes the test the same as the other kids, and her test scores are averaged in with the rest of the school's scores, which determine the school's grade?"
Around the table, heads nodded.
"Why on Earth would any school want a kid who brings their average down?"
The district's lawyer chuckled. "Well," she said, almost under her breath, "Sophie does better than some of the typical kids."