What I’m Learning

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.

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.



Camping for the win

We got back yesterday from a long weekend of camping at Grayson Highlands State Park in Virginia. We’d wanted for a long time to go camping with my Uncle Peter, an avid outdoorsman from Durham, so we decided to meet him at this spot near the North Carolina border. Jon took a couple days off work and we made the six-hour drive on Thursday, arriving in time for a late dinner.

Travel of any kind with little kids is hard work, and camping has its own set of challenges. Getting everyone packed up is a huge pain, and there is just so much that can go wrong. But to our pleasant surprise, the last couple trips we’ve taken have been remarkably smooth. This drive was the longest we’ve done with both kids, and it was – dare I say it – almost easy. (I know, I know. I can hear the groans of parents remembering car trips that left permanent emotional scars. I’m not trying to rub it in, I swear.)

Grayson Highlands was, true to Uncle Pete’s word, an absolutely gorgeous place. There were several hikes of a manageable length for young legs, complete with wild ponies and rewarding views. The campground itself was lovely, and we took advantage of a couple programs they offered over the weekend: a welcome bonfire with s’mores on Friday night and a salamander hunt Saturday morning. We ate some fantastic camp meals, everybody slept relatively well, we had a little down time to relax, and it was generally one of the nicest camping trips we’ve taken. (There was the Shower Horror of 2015, in which an attempt to bathe myself and the toddler in the campground shower resulted in wailing heard the next mountain over – hers, not mine, although I admittedly felt like joining her. Needless to say, she just stayed dirty the rest of the trip.) The kids had a blast, which makes us feel like perhaps we can achieve our goal of teaching them to really appreciate the outdoors.  I call that a win.

And now we’re home, with kids in need of catch-up sleep, adults with a bit of sunburn, and mounds of camping laundry to fold. Oh, and some really great memories, too.





For all his many faults, he’s been a faithful camping companion since 2003.


Playing superheroes: Somebody’s The Hulk or Thor, somebody’s Iron Man, and there is always an army of bad guys waiting to be defeated.










Pregnant mare


“Don’t pet the ponies,” the signs said. But what to do when THEY pet YOU?



The head of his herd, aptly named “Fabio” by the rangers, letting us know who’s the boss. 






Wearing her food, so pretty much a normal day



She loved playing in the tent.


Salamander hunting!







Nap time


Snack time




Red trillium








Tennyson looking down at the Christmas tree farms below


Painted trillium


On to the next thing

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.


Best preschool teachers ever


Awesome classroom assistant

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.

Awesome moms

Prepare yourself; this one’s going to get sappy.

It’s Mothers’ Day, and I’ve got to tell you: I know a lot of awesome moms. I see so many of you, loving your kids with everything you have, making sacrifices that often go unnoticed, juggling a millions things no one else thinks about, ending your days utterly exhausted, but knowing in your bones that they are worth it. I see the look in your eyes when you watch your kids enjoy life with abandon and when they make you proud. I see your pain when your kids are sick and hurting and you can’t fix it for them. I see you worry as your kids grow and make choices and take risks.

There is a lot of legitimate criticism out there about ways modern parents screw up. I see plenty of that, too. Moms (and dads, too, but their day’s in June) have a hard slog trying to figure out how to make the right decisions for our kids. How do you keep them safe while encouraging independence? How do you show them love as you demonstrate consequences? How do you teach them to love God and serve others in a world obsessed with self?  How do you shelter them while preparing them to live out there? It’s really hard; sometimes it about breaks your heart. Sometimes the simultaneous mundanity and enormity of the job is enough to bury you alive. Sometimes you really screw up.

But I see so many of you, making mistakes, getting beaten down, but carrying on out of the immense, undeniable force of a mother’s love. You encourage me and make me feel less alone. You give me hope that there are good parents in this world, raising kids who will make us proud. You give me the confidence to be boldly unapologetic in doing my best for my kids.

Of all the awesome moms I know, three in particular deserve special mention.

  • One mom gave me life and raised me to be the person I am. It may be a cliche, but being a mother really has given me new eyes to see my own beautiful mom. How much better I understand all that she poured into my brother and me. I am forever grateful for all she gave and continues to give, and now I treasure our friendship more than ever. I know she’s missing her own mom this year, and it reminds me how precious our time together really is.
  • One mom loved a couple microscopic clusters of cells enough to give them a chance at life with someone else, and now she loves from a distance a little girl who calls me “mama.” Laurie sent me a bouquet of flowers this Mothers’ Day, and it meant more than I can say. It took two moms to make Lina, and don’t you think I’ll ever forget it. (I’m sorry, Laurie – I know Dan is probably rolling his eyes at us again!)
  • One mom came to me by marriage, a mother-in-law who makes it impossible to relate to all those mother-in-law jokes. I have an inkling it may not be easy to cede the role of “chief woman in your son’s life” to someone else, but she has shown me such love and grace, and she has become a second mother and friend. She is a remarkable woman, and this weekend, we had extra reason to be incredibly proud of her as she graduated with her BSN.

I’ll leave you with pictures from our graduation celebration.













2 and Under at GiGi’s Playhouse

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.














A much more peaceful Lina at home

Spring Picnic at the Zoo

We joined something like 600 other people today for the Down Syndrome Association of Middle Tennessee Spring Picnic at the Zoo. We did this last year – only it was a summer picnic then, and a lot hotter! – and it was so fun to see how much more Lina got out of the experience this year. My in-laws were able to join us, the weather was absolutely perfect, and the kids had a blast. We talked with plenty of families we know and met a few new ones.

We feel so lucky to have a local organization that offers these kinds of opportunities. We have landed in an amazing community, and these events carry such a palpable sense of acceptance and celebration. (A sort-of actual conversation Jon had: “You’re worried your kid will pull my kid’s hair? Hey, me, too! Maybe they’ll really go at it and cure each other!”) Parents of older kids pass down advice about IEP meetings, we stop to coo over the tiny newest members, we celebrate the recovery of kids who spent time in the hospital, we dance to MC Hammer and Taylor Swift, the kids eat too many cookies, we notice kids who look like older or younger versions of ours, we juggle plates and messes and tired little ones. It’s real and it’s joyful.

Everyone should get to experience a community like this.

Note: I wish I could share more pictures of this amazing group, but I don’t have releases to publicly post photos of other families and wouldn’t feel comfortable doing so without permission.








Took a fall and just needed a little mama loveIMG_2974