Today is Mother’s Day. We had a lovely celebration with my family, and there is a post coming about that. But for right now, I’m just going to leave this here.
Today is Mother’s Day. We had a lovely celebration with my family, and there is a post coming about that. But for right now, I’m just going to leave this here.
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.
The kids finally headed back to school today after blizzard 2016, which means the return to a more normal routine. I picked Lina up from preschool at 11:30, we drove home, ate lunch, and then I put her down for a nap. I headed into my room to catch up on emails.
I think she had missed her toys, because instead of going straight to sleep, I heard her talking quietly and rustling around. After quite a while of this, I thought I’d better go settle her back into bed. As I walked across the hall, I heard a pause, then rapid footsteps, then the squeak of her bed springs. As I opened the door, I caught her trying to shove a book under her pillow. She gave me a wide-eyed look.
Why am I telling this story? It’s no big deal, I know: just normal three-year-old stuff. But that’s the thing. It’s normal three-year-old stuff. To me, that experience represents exactly what a kid her age should be doing, and I can’t tell you how it made me (secretly) smile. When Lina was first born, I didn’t fully appreciate how much the “normal kid stuff” would mean, and the joy I would get from watching my girl lead her boisterous, everyday life.
I suppose that’s one of those things they don’t tell you when they deliver a diagnosis.
I brought my camera to the 2 and Under group at GiGi’s Playhouse today, so you know what that means: pictures of ridiculously cute kiddos.
These kids are growing and overcoming obstacles. Every month, they show progress that comes from a lot of hard work and persistence, from them, and from their parents and therapists. I love getting to watch that progress. I look at them, and I see such bright futures. I see kids who will break down barriers, soften hearts and open minds, kids who will achieve things others said they couldn’t. I see kids who will live beautiful lives of meaning and purpose. Above all, I see kids who will continue to give and receive love and joy so deep that words fail to scratch the surface. It’s quite a view; I hope you see it, too.
This has been a week of good-byes to beloved therapists. Lina turns three on Sunday, which means she’ll be receiving all therapies through her preschool starting next week.
I admit to some tears, especially when I said good-bye to our beloved speech therapist, who has seen Lina every week since she was around seven months old. I didn’t get pictures with everyone, but these photos with Miss Lola, her TEIS developmental therapist, illustrate the bond between Lina and the remarkable people who have worked so hard to give her the very best start possible.
I can’t express what it has meant to us to have such a fantastic team of professionals supporting, guiding, challenging and encouraging our girl (and often her mama, too). Lina has made remarkable progress over the summer, and she is in a very good place as she enters preschool. Now we look forward to getting to know a new team of professionals who will continue to challenge, guide and encourage her in a more immersive environment.
This is life: bittersweet good-byes, and on to the next thing. We expect great things.
Next week will bring the inevitable “I just sent my firstborn off to kindergarten” post, but today, we’re going with another dose of the cuteness that happens every first and third Wednesday at GiGi’s Playhouse. These kids are growing! Little ones who used to lay quietly on the mat are off at high speed, exploring the far corners of the room. We cheer them on and chat about the next milestones. Siblings play dress-up and tend the toy cash register.
It’s a pretty great way to spend a morning.
I have hesitated to write this blog post for several reasons. One is I prefer to spend my time illustrating how typical our family is. I don’t spend a lot of time dwelling on how Lina – and by extension our family – is different, because in most ways, we’re not. Another reason is I don’t want to sound like I’m putting on a hero cape; I am no more a hero than any other parent of small kids. Also, I’m still kinda new at this whole “parent of a kid with special needs” thing. We’re still feeling our way along, learning as we go.
I do want to be real about the challenges we face. I mean this blog to be a glimpse into a real family that happens to have a child with Down syndrome. Sometimes there are things about that that are hard. There are things about being a family of any kind that are hard. But I’m also very lucky. Parenting a child with Down syndrome demands my best; it requires that I step up my game. I get to see the world from a little different angle, and that turns out to be a beautiful thing.
I see endless blog posts that purport to speak for whole groups of people. (“Ten Things Never to Say to People Who Pick Their Noses.” “Twenty Things Mermaids Wish You Knew About Life Under the Sea.” I obviously made those up.) I get it, and I suppose those lists have their place, but it’s way too presumptuous for me. I’m just going to share what I’ve taken from my experience thus far. Maybe it will mean something to you; maybe it will just help me clarify my own thoughts.
Things I’m Learning as Lina’s Mom
1. A new language – TEIS, IFSP, IEP, OT, SLP, sensory diet, petechia, hypotonia, typically developing child, peer model, ABA… You get the picture. But I’ve also learned that no one starts out knowing it all. We all learn as we go. When I need to understand a new term or concept, I do. My new vocabulary has been accumulated step by step, and it represents how far we’ve come in the last two-and-a-half years. I have a much greater confidence in my ability to suit up and face the next thing, whatever that is.
2. To live in the moment – If I let it, the future can sometimes feel like a scary place. There are so many uncertainties that could be crippling if I allowed them to be my focus. Instead, I make a deliberate choice to embrace the present moment. Jon and I pour our energy into being the very best we can for both our kids today, doing everything we can right now to prepare them for the future we want for them. We celebrate today’s victories and look for ways to overcome today’s challenges. I am soaking in these days with little kids, because I know how quickly they are passing. Being Lina’s mom has required me to do better at what I should do, anyway: focus on what’s in front of me, and spend my energy on things I can actually control.
3. Real optimism – I’ve mentioned before that I struggled in the beginning with knowing how to find the right balance between realism and optimism when it came to Lina’s capabilities. With a little time, the right answer came. I’m going to choose optimism, every time. I am going to believe that my greatest hopes for her are possible, and then I will do everything I can to make it happen. I recently in my work learned an organizational change process called appreciative inquiry. One of its key tenets is the “anticipatory principle,” which suggests that what we believe about the future influences how we act today. It turns out that decision for optimism I made after Lina’s birth has solid roots in change theory research. This natural realist is no longer afraid of planning for the best possible future. Life today for young people with Down syndrome looks nothing like it did a generation ago. I believe that it can look very different again by the time Lina is striking out into the world. That belief shapes my actions right now.
4. To measure my children only against themselves – This is one we all know but sometimes have a hard time practicing. We watch another child master something our kid hasn’t even begun to tackle yet and worry: “Am I missing something? Should my kid be able to do that?” With Lina, this can go to a very hard place. Simply interacting with kids her age makes her delays apparent. Add to that the periodic assessments that measure in black-and-white the gaps between her and typically-developing kids, and suddenly those comparisons color how I see my daughter. I am learning to better keep all that in its place. I can be clear-eyed about the goals we need to work toward, but with the solid understanding that my child is not defined by how she compares to anyone else. She is fierce and independent and goofy and affectionate, and she is growing and learning new things every day. That perspective has also made it much easier to avoid comparing Corin to any other child, or myself to any other parent, for that matter. We are all works in progress, thanks to the grace of God.
5. How to live in the real world – Neither of my children is perfect. I’m not perfect. My husband’s not perfect. Our marriage is not perfect. Our faith is not perfect. Our life is not perfect. We live in a messy, imperfect, sometimes downright awful, sometimes dazzlingly gorgeous world. I know – and I want the world to remember – that Lina is not some aberration in an otherwise perfect universe. She is a beautifully imperfect kid in a world full of beautifully imperfect kids. We talk about “celebrating differences,” but do we, really? We congregate in increasingly homogenous churches, neighborhoods and towns. We seek out people who are like us, because – let’s face it – it’s just easier. Let me turn this into a challenge: Seek out people who are different from you, and look for opportunities to really hear their stories. If in your daily life, you’re never uncomfortable or challenged to see past your preconceptions, something’s missing. It may be a cliche, but God’s children are a kaleidoscope. We come from different backgrounds. We come in all shapes, sizes and colors. We talk and move and think differently, and we all have our own struggles. The most basic thing God asks of us, after loving Him, is to care for each other. If we’re not doing that, nothing else matters. If we’re spending our lives in a comfortable bubble, we’re not living the gospel. Having a child with special needs doesn’t make me immune to this problem, but it does help me to leave my comfort zone and to seek to really understand people who appear to be different. I’ll say it again: I challenge you to seek out and get to really know and love people who are not like you. That’s how God changes lives, starting with our own.
It’s not a pithy Top Ten, but there it is: the ongoing lessons of my daily life. Stay tuned; I guarantee there is more to come.
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.
Yesterday was Corin’s last day of preschool. He was a little sad, but he mostly seems excited about moving on to kindergarten. His teachers made him an awesome yearbook binder of photos and art projects from the year. It was so fun to see his progress since last August. Tomorrow is technically the last day of school and graduation, but we’re skipping in favor of a four-day camping trip in Virginia. I figure he’ll have plenty more graduations in his life. For now, I’ll just feel a little nostalgic over the passing of this milestone, and then it’s on to the next thing.
Yesterday was also Lina’s last day at Mother’s Day Out. We’re taking the summer off, and then it’s on to the early childhood preschool in September.
Of course, by taking the summer off, I mean we’ll be running around to various therapy appointments every week, in addition to potentially being enrolled in a Vanderbilt research study that would involve four appointments a week plus periodic visits to Vandy for progress evaluations. We won’t exactly be kicking back and taking it easy.
We’ll also be working very, very hard on the sensory issues at the root of Lina’s hair pulling. We had our first visit with a new OT on Monday, and I am very hopeful she will really be able to help. It will take some time, but I think we could be in a much better place in a few weeks. I can’t tell you how much I need that to be true. We stopped at one of our favorite farmer’s markets yesterday afternoon, and the kids had a great time on the playground. Lina loves the playground, but it is exhausting trying to police her every move. No matter how fast I am, I can’t entirely prevent her from pulling hair. Parents have been so understanding, but what can you really say when your child comes away with a handful of another kid’s hair? Her aggression has spread to pinching and hitting. She is clearly so frustrated and anxious; I think soon we’ll have a much better handle on why and how to help.
I was asked a few months ago to be a new co-leader for the 2 and Under group at GiGi’s Playhouse. If you’re not familiar, GiGi’s Playhouse Down Syndrome Achievement Centers offer free educational and therapeutic programs for people with Down syndrome, their families and the community. These centers are amazing places, and we are so lucky to have one just a few minutes away.
The 2 and Under group is obviously for the really little ones. It’s a welcoming and supportive place for families who are perhaps still coming to terms with a diagnosis or who may have questions about early intervention, therapies, medical issues, and everyday kid stuff that comes up in those first years. It’s also a great opportunity just to connect and socialize with some really lovely people. A fantastic OT volunteers her time to help lead the group, and we sometimes bring in presenters to address various topics. Today, a physical therapist talked to the group about gross motor challenges for our kids and the importance of early therapy to help them develop healthy muscles and skills to build on as they grow. I love getting to be a part of this group, not the least because it means I get to play with some of the cutest itty bittys on the planet, even as Lina is rapidly leaving that stage behind.
I took the camera today and got permission from the parents to share some pictures of these precious kiddos. I’ll get to those shortly, but it would be an incomplete account if I didn’t disclose that for the duration of today’s session, Lina terrorized the room with an epic display of hair pulling. The minute we stepped in the door, I felt her little body tense, and it was downhill from there. I did joint compressions and tried to calm her, to no avail. She made the babies cry, she made the big kids cry, she yanked a mommy half-way to the ground. So, here’s my blanket apology to all the people Lina attempted to scalp today. That wasn’t exactly the warm and comforting environment GiGi’s aims to provide. We have a new OT lined up and are working on it, I promise.