High five

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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.

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This speeding train

Lina seems to be going through another developmental jump, adding new signs and a few spoken words to her vocabulary, following through on more pretend play, stacking eight-plus blocks (and carefully turning them to make sure they line up properly), answering questions with “yes” or “no,” initiating friendly interactions with family, friends and strangers… You can tell she is taking in so much and understanding more of her world all the time.

We’re also seeing an improvement in her hair pulling, although it’s still very much a work in progress. The new occupational therapist did a full sensory evaluation and had me keep a detailed behavior log for several days. We learned that Lina has some challenges with transitions (meaning any time we change activities or locations) but is within the normal range on all sensory processing. The take-away is that at this point, the hair pulling is mostly behavioral. Lina’s receptive language skills are well ahead of her expressive IMG_2321communication, which creates frustration. She doesn’t always know how to interact and communicate with other kids and adults, and she may not know how to say that she’s overwhelmed or tired. The OT and speech therapist are helping us work through these issues. As the hair pulling eases a bit, we’re finding that a lot of the behavioral challenges we face would probably look pretty familiar to any parent of a strong-willed two-year-old.

We also learned after an initial evaluation at Vanderbilt last week that Lina qualifies for the KidTalk study. The Vanderbilt KidTalk program conducts research studies on communication intervention for preschoolers with Down syndrome (and also separate studies for preschoolers and school-aged children with autism). We’d been on a waiting list for a few months, and they called us a couple weeks ago with an opening in the current study. Lina was randomized to the intervention (rather than the control) group. This is very exciting, because it means she has immediate access to free communication interventions four times/week for approximately five months. We’ve heard great things about KidTalk and are hopeful this will push her progress over the summer and heading into her first weeks of preschool.

Of course, you can imagine what it looks like trying to fit four new therapy sessions per week into an already busy schedule. These sessions added to her existing early intervention, speech, OT and PT appointments mean Lina will be receiving six to eight sessions per week. The KidTalk study will also involve driving to Vanderbilt every six weeks for evaluations (some of which require three separate appointments) to measure progress. Those evaluations will continue for several months after the interventions are finished. Juggling the family schedule has started to feel like an Olympic sport. IMG_3444

Lately, I feel like someone hit the high-speed button on my life; this train is whipping around the tracks at 100 mph, and I can’t figure out how to slow it down. I had dreams of enrolling the kids is swimming lessons this summer. I want to have friends over on the weekends to cook out. I want to have play dates and spontaneously decide on a zoo outing or a day at the park. These are the last few months before Corin starts school for real, and I crave time to enjoy my kids. I don’t know where to find it.

This isn’t my usual kind of post. I try to keep a positive perspective, because I know how blessed I am. I truly am so grateful for my family and the life we have. I always feel the urge to disclaimer: I know there are so many people out there with problems WAY bigger than mine. But right now, I’m having a hard time finding balance. I don’t want off the train; I’d just like to be able to slow it down a bit, to take in the scenery and enjoy the ride. My guess is that’s pretty much what we all want.

I’ve decided I’m going to have to start carving time out where I can. I’ve got a very fun trip to San Francisco with a dear friend in a couple weeks, and that’s keeping me going for now. I’m probably going to have to start saying no to more event invitations. (Friends, listen up: If I decline an invite, please don’t be hurt. And please don’t stop inviting us! We want to see you; just know we’re juggling a lot and trying to find some sanity to the pace of life around here.) We’re going to have to be mindful in setting priorities.

In the meantime, I am so very grateful for the times we do get to relax, like our recent camping trip and moments when I can sit and type a blog post (while ignoring the never-ending piles of unfolded laundry). I am so grateful for understanding friends who offer a listening ear, and for family who pitch in wherever they can while managing their own busy lives. (Corin is staying with my parents this entire week – his longest stay away from home!) I am so grateful for a remarkable husband who is crazy about his family. Above all, I’m so thankful for a God who gives me the strength I need, even as I struggle to find time to make Him the priority He has to be. I pray that somehow, amidst all my busyness, He can use me to to really, truly touch the lives of people around me. I don’t know how to do it, but it has to be the overarching purpose of this crazy life. That’s something I’ve been thinking a lot about, and maybe there’s another blog post there. For now, I need the reminder that in this train analogy, I’m not the conductor. Thank God, He is.

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