Posted by: Hallie Levine | February 21, 2012

The Miracle Worker

A couple weeks ago, we took Jo Jo to the Yale Child Study Center for a two day comprehensive developmental evaluation.

A lot of people questioned why we were going—after all, we know Jo Jo has Down Syndrome, and we know she will have delays. It’s the nature of the beast, so to speak.

But for a long time I’ve been silently struggling with my thoughts about Jo Jo. Over the last couple years, she’s really seemed to have reached a plateau when it’s come to her overall cognitive development and language. And while we’ve had a few growth spurts—most notably, the explosion of language after her tonsils and adenoids were removed—Jamie and I  both felt that for whatever reason, Jo Jo wasn’t living up to her full potential. We weren’t satisfied with teachers or educational evaluations who just condescendingly told us our little girl was “low functioning.” We know our daughter. We know what she’s capable of. And we wanted a second opinion, from an institution who doesn’t have anything to gain from bias (unlike, er, the school system).

When we brought her into the center that first day, I froze. I flashed back to a year earlier, when I had left Johanna alone with two educational evaluators from the Stamford Public School system and my little girl had been so frightened she began banging herself on her head. I had been so angry; angry that they had deliberately put her in a stressful environment and seemed to ignore her signs of anxiety; angry that they hadn’t stopped their evaluations (which were pretty useless, at that point) and just brought her to me. Angry that after a half hour staring at my shaking, fingernail gnawing, stressed out daughter, they had pronounced my two and a half year old daughter to have the developmental skills of a nine month old.

“I’m worried,” I told the psychologist as she led us into the testing room.

“I know,” she said, and she smiled reassuringly. “Parents often are. But you’ll stay with her the entire time. You’ll see.”

And I did. Johanna adored Pamela, the pretty twenty something psychologist who worked diligently with her to label pictures and build block towers. Johanna listened, pointed to objects, and recited names with the utmost earnestness, staring intently at Pamela and clapping her hands and shouting “Yay!” whenever she got something right. At one point, Pamela pulled out a piggy bank and instructed Jo Jo to start putting in coins.

“It’s too small for her,” I said. “We have a much larger piggy bank at home.” I moved my hand on top of hers, to try to help her, but Johanna scowled and pushed my hand away. “No mommy,” she said, and then, with her eyes squinted tight and her lips pursed, proceeded to slip a coin into the piggy bank. “Yay!” she said again, beaming at Pam. “Yay yay yay!”

“JoJo, you are such a hard worker,” Pam said admiringly. And then, softly, to me, “Your girl is amazing. She’s giving it everything she has.”

I just sat there, burying my face in Johanna’s hair, smelling the comforting scents of her baby wash shampoo, and thinking about how long it had been since I had heard those words. The phrases we usually hear at school is Johanna is “unfocused,” “easily distracted,” “requires maximum assistance.” Yet here was my little girl, merrily scribbling and making block “choo-choo trains” all on her own.

The next day was Johanna’s speech evaluation. When we walked into the entrance, we were greeted by a beautiful woman with long dark ebony hair and black leather boots. “Hi Johanna,” she said, and as she moved closer I realized she was signing. “How are you?”

Johanna stared at her intensely and copied her moving hands. “We haven’t signed as much recently,” I apologized. “For a while she was doing it, and then she stopped. I just felt like she wasn’t responding.” But then I paused. Johanna and Leah, the speech therapist, were staring at each other, having some sort of intense conversation with the simple movements of their fingers.

“I guess she picked up more than I thought she did,” I said lamely.

“Yes,” Leah said, nodding. “She did.”

Since it was the second day, Jamie stayed in the observation room with Jo Jo during the evaluation while I watched behind a glass window with one of the Center’s Directors (who was peppering me with questions) and about twenty residents, fellow, visiting scholars, and medical students. The Director was briskly trying to interview me, but every few minutes she’d stop so we could both marvel at Leah working with my daughter. Somehow she was getting Jo Jo, who usually screams and throws things when she wants something or is frustrated, to express her needs verbally.

“This woman is incredible,” I told the Director. “I want to bring her home to work with us every day.”

The director chuckled. “That’s what everyone says,” she told me.

Leah was holding onto a toy, a top that spun around in a blaze of colors and music. Jo Jo clearly wanted it, and was grunting and kicking her feet and screaming in frustration.

“Jo Jo,” Leah said. “Use your words.”

Then she signed I, pointing her thumb towards 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 top, silently drawing a circle.

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

Jamie’s head shot up and he looked at Jo Jo, stunned. I started to cry. Behind me, two rows of teaching fellows, residents and medical students were cheering.

Leah handed the toy to Jo Jo and smiled at Jamie. “I think she’s done now,” she said softly. “She’s exhausted.”

Jamie stared at Jo Jo for a few seconds. I noticed his eyes were wet. “I didn’t think she’d be able to do that,” he said finally.

“Trust me,” Leah said. “Your little girl will be able to do many, many things.”

An hour later, we were sitting in a conference room going through the results of Yale’s evaluation. In many ways, it was crushing to hear that our daughter is developmentally closer to a two or year old. But on the other hand, it was so incredible to see how positively she responded to the testing at Yale, and how they were able to motivate her to work hard enough that they could see her full potential.

“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.”

I know that, and it was so incredibly affirming to spend an hour around a table with educators who seemed to genuinely care about my daughter.

Yale’s made it clear that they think Jo Jo isn’t getting nearly enough of the support she needs from our school system. So we’ve started our battle with them, to make sure our daughter gets what she so desperately requires if she is to have any hope of flourishing in kindergarten. We get a comprehensive report in eight-ten weeks.

We’ll have some pretty big battles with our school district, I’m sure about that. But probably the most important thing I gleaned from this whole two day evaluation is that my little girl is absolutely amazing. When she’s motivated, she can work really, really hard, and she will use everything she has to achieve her goals, whether it’s putting tiny coins into a piggy bank, building a block tower, or speaking in full sentences.

I’m so proud of my beautiful blonde princess, my little warrior.

Jo Jo, you rock. And as your mom, I will make sure you get every sort of support you need to make you the best Jo Jo you can be.

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Responses

  1. What a terrific post. With you as her tireless advocate (which you will need to be, given how school districts aim to do less than nothing, counting on parents to be too overwhelmed/emotional/beleaguered/disheartened to fight back) I know the sky’s the limit for JoJo. Good luck Hallie! xo

  2. That is so wonderful Hallie! I am so happy you brought her there and you could see and they could see her abilities and her amazing spirit. I miss her and hope that you and she will get all the support you need for her to thrive and do all she is capable of and more. Keep me posted.. Thinking of all of you.
    Lisa

  3. She has a great mother, she will do well!! Grandpa David

  4. Yeahhhhhhhhhh!!!!!! Good job, JoJo and family! Keep it up!

  5. That is so wonderful. I’m feeling your joy with you as you write. We are about to embark on our first IEP and already having issues. I just don’t understand why the school system doesn’t want the best for our kids. It’s their JOB to provide a great education for all kids!

    Also I read your parents story about Johanna before I ever conceived my daughter with DS, you are an excellent writer and congrats on your sassy, smart daughter.

  6. When reading this I almost cried. It is so heartwarming to read about a parent who wants to give their child every opportunity possible. It’s kind of inspiring really.

  7. Yesssss! Go Jo-Jo! What an encouragement for you all! X


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