Lina had her final visit yesterday with her KidTalk interventionist. (I actually don’t know if that’s the official term.) KidTalk is a research program through Vanderbilt University’s Kennedy Center. It focuses on communication development for kids with Down syndrome or autism.
Based on positive reviews from other families, we enrolled Lina in KidTalk last year. She went through the initial evaluation to qualify her for the study and was assigned to the intervention group (as opposed to the control group, which gets the intervention after the research period is over). For the intervention, we committed to four appointments a week: two in our home and two somewhere in the community, which for us was GiGi’s Playhouse and an office at Vanderbilt. During those appointments, the interventionist worked with Lina on speech development using a very specific play-based methodology honed over many years of research. For this specific study, the team was testing the use of an iPad app as an additional communication tool. The in-home visits also focused on training me in the intervention methodology. In addition to those appointments, we also committed to periodic evaluations at the Vanderbilt offices to track her progress.
Lina began the interventions last June. It was a huge commitment. Honestly, the study, combined with Lina’s weekly standard therapy appointments (speech, OT and PT), pretty much ate up our entire summer. Rather than going to swimming lessons and the zoo, Corin, Lina and I spent our time ferrying back and forth to appointments. I’m not going to lie: it was hard. I was tired a lot. I worried about what it meant for Corin. But I could see Lina responding to the interventions. Her progress became apparent, and that kept me going.
From almost the day Lina was born, Jon and I felt that communication was going to be one of the most important aspects of her development. It was apparent very early that Lina was bright and inquisitive, curious about her world and eager to learn and explore. We also knew that difficulty communicating could keep the rest of the world from seeing what we saw. We were determined to access any help we could find to push her speech development. We thanked God that an infant hearing loss diagnosis (which proved to be temporary) allowed her to qualify for earlier speech therapy than the Down syndrome diagnosis alone would have. She saw a wonderful Vanderbilt therapist weekly from the time she was about seven months old.
And now here we were, slogging through a very difficult summer in the belief that it would all pay off, that all these interventions and research-based methods would give Lina the support she needed to push her speech development forward. Her final intervention appointment was in August. We have since been back to the Kennedy Center several times for periodic follow-up evaluations. The last of those was February 15th. We also received periodic maintenance home visits from our much-loved interventionist, Tatiana.
Lina’s speech progress has seemed pretty obvious to me. We estimate she now spontaneously uses well over 200 words and signs, and even just in the last few weeks, her vocabulary has been exploding. She delighted her school speech therapist just today by suddenly greeting her by name, as if she’d been hanging on to that trick for just the right moment. On the way home, I was serenaded with “Jodie, Jodie” and a wide grin. She busted out the word “railing” on the way up the stairs yesterday. Every day there are new words; I can’t keep track of them all. Her receptive language has always been well ahead of her expressive – typical for kids with Down syndrome, and one reason sign language works so well – but we’ve seen tremendous strides there, too. I can reason verbally with her in ways that seem pretty typical for any three-year-old. She can follow two-plus step directions (although her wildly independent nature sometimes interferes!). She can easily understand advanced “first, then” concepts: “I know you want to play blocks, but first you need to finish eating your apples.” “We can go play outside, but you need to clean up your toys first.” I’ve found I no longer need to focus on simplifying language and concepts for her to understand: She gets pretty much anything I tell her.
But having said all that, I still sometimes second-guess myself. What if I’m overestimating her progress? I know she’s still delayed compared to her typical peers. Are we really pushing her enough? Why is that one word sounding so muddled? The guilt sets in: I haven’t done any KidTalk play with her for days. I need to be working more on that.
You can imagine, then, how I felt when yesterday, on that final visit, Tatiana told me that she had compared Lina’s last standardized evaluation with her initial one. She said, “Lina gained five points on her score.” I had no idea what that meant; five points didn’t sound like much. But she went on to explain that they almost never see that big a change. They expect to see an overall increase in points, because children will naturally be learning and growing over the course of the evaluation period. But in order for Lina to see that kind of scoring gain, she had to show significant improvement compared to typical progress they would expect in that time.
I don’t think the news really sank in for me until I started telling Jon about it yesterday evening. I know all the flaws and problems with standardized evaluations. I know they are snapshots of a moment and place in time and not a full picture of any child. But right now, that measurable sign of progress means the world. It really is clicking; my kid is learning to talk. All the hours we and her therapists have poured into her for the past 3 1/2 years are paying off. Someday soon, the world will be able to hear all she has to say.
I wish I could bottle this feeling to share with parents who have just received a Down syndrome diagnosis. Yes, a lot of things are going to be harder. There will be times you’ve gone over the same activities 1,000 times to little response. You will all get tired. But then, victory comes. Right there in front of you is undeniable proof of the payoff, and it is so, so sweet.
Sure, I’ve always known that work brings rewards, but it turns out it’s taking Lina to really teach me the fierce joy of hard-won milestones.
A Dash of the Unexpected 