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 communication, 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.
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.