Khalil loves music. He sings a lot. He moves around to music, and he loves to drum out rhythms. “He’s absolutely on point,” says Khalil’s dad. “He can sound out every melody. He knows more songs than I do!”
Khalil Sankara is a 3-year-old student at Frazer Center. He is the fourth and youngest child of Ingemar and Kyla Sankara, who had Khalil in a home birth. On Khalil’s second day in this world, his parents had to rush him to Egleston hospital when they realized he had no anal opening. This congenital condition is known as an imperforate anus, and doctors told the Sankaras that it could be repaired, but it would involve several surgeries over the course of about a year. The first one, a colostomy, happened right away.
Khalil spent his first three weeks in the NICU (neonatal intensive care unit) where it became apparent that he had issues breastfeeding and swallowing properly. A feeding tube with a pump was inserted, and more surgeries were added to the list for Khalil’s near future.
Yet another diagnosis was given during this time—Khalil had Down syndrome—or Trisomy 21, a genetic disorder that occurs when a person has an extra copy of chromosome 21 in each cell of their body. “We were surprised by all the challenges Khalil would have to overcome,” remembers Ingemar. “We were very happy—he’s beautiful. We loved him, all the kids loved him.” But it was a challenging time for the whole family.
Both Kyla and Ingemar were able to take three months off from work consecutively so one of them could be home with Khalil for his first six months. Thankfully, they had family nearby, having both grown up in the Decatur and Morningside areas. The support from their extended family made it possible for Ingemar and Kyla to deal with the challenges.
As their leave time was coming to an end, the Sankaras started to envision a daycare situation for Khalil. It was during the pandemic, and it became evident that there were not many options available. Frazer Center was nearby, and it made the most sense to the Sankaras to put Khalil on the waiting list.
By the time he was 6 months old, it was pretty clear to the Sankaras that Khalil was having vision issues. That’s when they received another official diagnosis—“He was completely blind. No light sensitivity or anything,” says Kyla.
At 8 months, Khalil’s feeding tube was removed. As the Sankara’s began spoon-feeding him, they noticed that he seemed to be tracking the spoon with his eyes. They convinced themselves that he must be using his other senses to perceive where the spoon was.
Meanwhile, as the pandemic wore on, Frazer Center was in the thick of the early childhood education hiring crisis. There had been some recent administrative staff turnover in the Child Development Program when the Sankaras were notified of an opening for Khalil. “We went for our first tour and realized that the new administration team didn’t know about the blindness diagnosis,” recalls Kyla. That’s when they were told that Frazer wouldn’t be able to meet Khalil’s needs after all. “That was a big blow.”
But Kyla and Ingemar were determined. “I think they weren’t confident they could take care of him safely. Which I can totally understand,” says Kyla. “We stayed in conversation and got them to agree to place him and see how it went.”
“Once Khalil was in a classroom at Frazer, everything really fell into place,” says Kyla. “He was three weeks in that class before he was counting to 20, counting to 10 in Spanish, singing the alphabet,” Ingemar says. “The teachers were just amazing.”
Before long, Khalil’s teachers were noticing that he could track objects with his eyes. They would demonstrate for the Sankaras, but it just didn’t make sense to them. “He must just have super powers.” they decided. “Finally, when Khalil started crawling, it was very clear he could decide where he was going and go there. He could see a toy across the room and get to it.” Khalil still has structural issues with his retinae and optic nerves, but he now has glasses and is learning to get around more and more on his own.
Khalil is in his third classroom at Frazer, and “each set of teachers he’s had has been better than anyone could have asked for, and really strong advocates for Khalil and his needs in the classroom,” says Kyla. “Throughout this process, it’s hard to overstate how important they’ve been—especially Cordney, Paula, and Torie—not only with advances in his development, but in advocating for him with the Frazer administration on our behalf,” says Ingemar. “I think seeing his diagnoses on paper was very different from the experiences his teachers were having in the classroom with him. They would chime in and advocate for him as to what the day-to-day reality was. They were very helpful in keeping things on track and keeping his enrollment in place, which was huge for our family.”
When Inclusion Coach Sahirah Boyd joined the Frazer staff earlier this year, “things jumped to a whole new level with team collaboration and Khalil’s support,” says Kyla. “There’s a marked change to the inclusion level with the background she brings to the job.”
Part of Sahira’s work is to coordinate and communicate with the parents, teachers, and Khalil’s therapists who come to Frazer to work with him in the classroom, playground, and therapy rooms. “It's all very seamless,” says Kyla. “The teachers have always done their best to implement whatever the therapists recommend will help in the classroom.”
Frazer’s financial assistance program has also helped the Sankara’s keep Khalil at Frazer. “Daycare is expensive across the board,” says Kyla. “But with our other kids, we were able to take advantage of a neighborhood sliding scale daycare program. But that program wasn’t set up to support Khalil. So the award we have from Frazer helps make it possible for him to stay there.”
Just this past summer, Khalil received one more diagnosis: Autism Spectrum Disorder (ASD). The Sankaras were less surprised by this news, since Khalil had exhibited self-stimulatory behaviors that are common among children with ASD, such as rocking and echolalia—repeating what someone else says. With the ASD diagnosis, Khalil qualifies for Applied Behavior Analysis (ABA) therapy, which he just recently started. “It has been amazing for him,” says Kyla. “Now he has somebody there in the classroom with him four days a week for two to three hours, supporting his ability to wear his glasses, play with other kids, and be more autonomous in his environment. It’s been really great.”
The Sankaras have had quite a journey with Khalil. “As soon as we wrapped our heads around what the situation was after he was born, we understood that we were going to have to advocate for him in ways we didn’t yet know,” says Kyla. “We understand our society is not built to take care of kids like Khalil. It takes a lot of work. We have amazing resources to support him, but the legwork to put those resources in place is immense.”
What could have made their journey easier? “To have more structure in place to help families right away who have a child with Trisomy 21. Hospitals should have a lot more in place programmatically to help families know what to look for and expect,” says Kyla. “We shouldn't have left the hospital without being signed up for Babies Can’t Wait and starting our application for the Katie Beckett waiver. They shouldn’t have discharged us without at least those two things in place.”
Ingemar adds: “There should be mandates around private daycares providing spaces for kids with special needs under the age of 3. Parental time off upon birth—that’s something that needs to happen at the state level. Being able to have guaranteed paid time off upon having a child would lead to much better outcomes for Khalil and every child and family.”
Meanwhile, Khalil’s communication skills continue to grow, as does his community. He’s a little celebrity around the halls of Frazer. Everyone loves to greet him as he zooms by using his walker. His teachers are eager to share his daily moments of progress with his parents. And Kyla and Ingemar are hopeful for Khalil “to develop enough independence to pursue things that he loves and enjoys, especially music,” says Ingemar. Kyla adds, “And to continue to be surrounded by such a loving and supportive community.”