Why one mom cried 'great, shaking, silent sobs' when her daughter spoke a simple sentence

Hallie Levine
Hallie Levine’s daughter Jo Jo, who has special needs, and the family dog. (Photo: Fatima Barroso)
Hallie Levine’s daughter Jo Jo, who has special needs, and the family dog. (Photo: Fatima Barroso)

“Use your words, Jo Jo. Use your words.”

Leah, a speech therapist with long dark hair, leaned toward my almost-4-year-old daughter, Johanna, gesturing in sign language. Jo Jo grunted and kicked her feet in frustration. She kept trying to grab the object that the speech therapist had — a light-up spinning top.

But Leah wasn’t having it. “Jo Jo, use your words,” she said again.

“Argh!” said Jo Jo. Her little cherub face had turned bright red, and wisps of her blond hair had come out of her French braids and were falling into her eyes. She swatted them away, exasperated. “No!” she yelled. “No, no, no!”

I sat behind an observational glass window, surrounded by a team of child psychologists and residents at the Yale Child Study Center, one of the leading institutions for children with developmental delays in the country. Jo Jo’s father and I had taken Jo Jo, who has Down syndrome, there for a full cognitive and psychological evaluation. Our school district had essentially written her off and basically told us she was uneducable. But as her mother, I knew better.

“Use your words,” Leah said again, calmly. Then she signed the word “I,” pointing her thumb toward her chest.

“I,” said Jo Jo, waving her legs defiantly.

Leah signed “want,” extending her hands out in front of her.

“Want,” said Jo Jo, throwing out her hands.

Leah signed “more,” moving both hands together.

“More!” shouted Jo Jo, while imitating the sign.

Leah signed the word “top,” silently drawing a circle.

“Top!” shrieked Jo Jo. Then, unprompted, “I want more top!”

Next to me, I could hear the director of the center suck in her breath in amazement. Behind me, two rows of teaching fellows, residents, and medical students began cheering. And I started to cry great, shaking, silent sobs.

My daughter — whose earlier educators had declared that she was incapable of saying more than a few words — had uttered her first sentence. She smiled brightly as Leah handed the toy over to her. “Thank you,” Jo Jo said politely, unprompted, before surveying it happily.

“Good work, Jo Jo,” Leah said. She lifted her head up and stared straight into the observational glass at me. “Mom,” she said, “your daughter is amazing.”

Almost a year earlier, I had left Johanna alone in a similar room, with two educational evaluators from our local school district. For the first few years of her young life, she had gotten essential services such as speech, physical, and occupational therapy through Birth to Three, a state-funded early-intervention system. But when she turned 3, she would age out, and the school district would take over, providing a preschool that would also include these therapies. Unlike the Yale evaluation, the program didn’t allow parents to observe in another room. The school evaluation was quick, and when the psychologist came out about 15 minutes later, she asked me a strange question: Did Jo Jo usually hit herself on the head?

I stared at her, incredulous. “She’s never done that,” I said.

“Well, she did,” she said brusquely. When the other evaluator brought out my daughter a few seconds later, I was shocked to see her: She was trembling and gnawing at her fingernails. It was painfully clear that she’d been so anxious and frightened, she’d begun banging herself on her head as a way to convey her anxiety. How could people supposedly trained in special education not see that?

I was even more furious when their evaluations came in. Since she’d been so upset, she’d refused to participate in most of the examination, and as a result, they’d proclaimed that she had the cognitive abilities of a 9-month-old.

I fought back fiercely, but when it was clear that I wasn’t getting anywhere, I knew we’d have to do a private, independent evaluation. The waiting list for Yale was usually almost a year long, but in some miraculous turn of events, there was a last-minute cancellation, and we got in for a comprehensive two-day evaluation within two weeks.

An hour after Leah’s session with Jo Jo, we were sitting in a conference room going through the results of Yale’s evaluation. It was incredible to see how positively she responded to their testing, and how they were able to motivate her to work hard enough that they could see her full potential. At school, Johanna was usually dismissed as “unfocused,” “easily distracted,” and requiring “maximum assistance.” Yet over the last two days, I had watched her make scribbles and block “choo-choo trains” and speak in a full sentence — all things her typical peers were also doing.

“She’s a bright little girl,” Leah said as we were ending our conference. “This is a little girl who will be fully capable of speaking full sentences and of reading. Don’t let anyone try to convince you otherwise.”

Yale sent us home with a comprehensive 40-page evaluation, including specific goals they felt Jo Jo’s education team should work toward. Unfortunately, the district wasn’t having it, so we spent months more battling them, meeting with administrations higher and higher up the food chain until finally we ended up in mediation. But five months after that initial evaluation, and thousands of dollars in attorney fees, we’d come up with an educational plan that I believed made sense for my daughter.

To this day, I still don’t understand why the district pushed back so hard. They spent so much time, money, and energy fighting with us, which could have gone toward helping my daughter and other children in special education with her.

During her second year of preschool, Jo Jo made some progress, but we really didn’t see her thrive until she was in kindergarten, with a teacher and an aide and a whole team of therapists who loved her and truly believed in her. Now, we’re in a new school district, but with the same sort of amazing support. Since then, we’ve had our share of roadblocks. There have been times when Jo Jo’s learning has plateaued again, and I’ve questioned whether she’d be able to move on to the next level.

But then I remember that fateful afternoon at Yale, where a little girl with big hazel eyes and French braids stunned her mother with all she was capable of, and I realize that at the end of the day, I have to believe in her, with everything I have. The world is still Jo Jo’s oyster — as long as there are people around her who have faith in her and in her potential.

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