The sibling question

One of the things I worried about immediately after Lina’s birth was the impact her diagnosis would have on Corin. He didn’t have a say in this; how would his life be different as the result of having a sister with Down syndrome? Would he feel shortchanged because of the extra attention and effort that would go into meeting her needs? Would he be embarrassed by her or resent her for making our family different? How would we explain Down syndrome to him, and would he understand? On the flip side, I felt instinctively that the net result would be a son who had a greater level of empathy and a strong connection with his sister. (As it turns out, research backs up that belief.)

I’m pretty sure these worries and hopes are common to most parents who have been or will be in our shoesIMG_8591. (In fact, research suggests concern for siblings is a big factor for women who choose to abort after receiving a prenatal Down syndrome diagnosis. See the above link.) I’ve been thinking about this subject today after replying to a question in an online forum about how to talk to siblings about Down syndrome.

Corin was 2 1/2 when Lina was born – much too young to understand that there was anything different about her arrival or her person. Lina was his baby sister, and he intermittently embraced or ignored her, as any toddler does with a new sibling. He proudly pushed her stroller and talked to strangers about her, and we encouraged their sibling bond in all the ways parents do.

I don’t know exactly when our first real conversation about Down syndrome happened, but I’m pretty sure it came up naturally as a result of a doctor or therapy visit. Corin was around three, and I talked to him about how no two people are exactly alike. “We’re all different in our own ways,” I told him. “Some kids are really fast runners. Some kids have a hard time reading but are really good at math. Some kids have red hair or brown hair, some kids have blond hair or black hair. Some kids need glasses to see well or maybe have trouble walking and need a wheelchair to get around. Some kids have something called Down syndrome. That’s what Lina has.” I told him Down syndrome meant13900190_10155098221844745_5088795064837644994_n that it might take Lina a little longer to learn some things, like how to walk and talk, and that she might have to work extra hard at things that would be easier for some other kids. But, I told him, she will learn and do pretty much everything you do, and very often, she will learn by watching you.

From then on, Down syndrome was part of an open and ongoing conversation. It’s unlikely Corin will remember one big talk. Instead, Down syndrome is just something he’s grown up with. It’s one part of who his sister is, and one small part of our family’s story. As he’s gotten older, we’ve talked a little about the basics of genetics and how Down syndrome happens. He has occasionally asked more detailed questions, and sometimes, we’ve had to clear up confusion. (For example, he seemed at one point to think there was a connection between Down syndrome and embryo donation. We had to make sure he understood that Lina came to our family as an embryo from a donor family, but that’s not why she has Down syndrome.) We haven’t always had the perfect answers or known exactly what to say, but we’ve worked through it together.

Now, at six years old, Corin notices people in public who have Down syndrome or another type of disability. It offers a lot of great opportunities to have conversations like, “Yeah, isn’t it awesome that that guy has a wheelchair to help him get around? I bet he likes to go fast!” or “Yes, I saw that girl using sign language. She may be deaf. Isn’t it cool there is a language for people who can’t hear?” Our conversations about Down syndrome have become part of a larger environment in which our family celebrates differences of all kinds. Discussions about disability, race, gender, politics and religious differences form an arc, a family theme of appreciating all kinds of people and understanding that we are all beloved children of God with our own special roles to play.

There are still a lot of years ahead of us and probably a lot more questions to answer and challenging situations to navigate. Have there been times when shuttling back and forth to therapy appointments has been wearisome for Corin? Sure, that’s happened. There have been times when he has acted out in a ploy for attention from therapists or doctors who were focused on Lina. But I strongly suspect that when he is old enough to look back, he will say hIMG_7474e thought nothing of those things, because it was simply how things were. This is our normal, and Corin loves his sister dearly.

In the end, I am incredibly thankful Corin has a life experience that makes lessons of acceptance and understanding so real. As a kid, I knew my dad was unusual to other people because he was blind. It was amazing to them that he could cook and read us stories and do so many of the things any dad does. To us, braille stories and reading pancake recipes out loud to dad on a Sunday morning were normal. Our family adapted and thrived. I learned that what seems strange or unfamiliar to me may be normal and even wonderful to someone else. I learned that what appears to others to be a disadvantage can in fact be a strength. I learned that people are people underneath all our differences. Now, Corin will live those same lessons through his grandpa and his sister.

What parent wouldn’t want that for their child?

New friends: 2 & Under at GiGi’s Playhouse

It’s been a little while since I’ve posted photos of our GiGi’s Playhouse 2 & Under group. We’ve gained some new members, and our long-time members have grown. One friend has a new little sister. A couple of our members spent some time in the hospital this winter battling nasty bugs but are thankfully healthy and thriving again. Our speaker this month was a behavior specialist who shared pro tips on addressing everything from potty training to throwing food and grabbing toys from friends to refusing to come when called. (And now you wish you’d been there…)

But really, you just want the cute pictures, right? I hear you.

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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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Naptime shenanigans, or things that make me smile

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.

Why the Buddy Walk?

I have a lot on my mind, so bear with me over these next couple posts as I try to bring some order to my thoughts.

First, I want to talk more about the Buddy Walk. We had 33 people walk with Team Lina. I don’t have the words to express how much every one of you means to us. The support is incredible, not just for this moment, but because of what it means for the future, for Lina, for our family, for the thousands of other people in our community who have Down syndrome or love someone who does and for many more who will come after us.

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I’ve thought quite a bit the last few days about the question, “Why do we have the Buddy Walk?” The first and most obvious answer is that it serves as a rallying event for fundraising. This one event is the primary fundraiser for an entire year of programs and services. Trust me when I say, those services are really important.

From the moment parents receive a Down syndrome diagnosis for an unborn or newborn baby, they have access to balanced, accurate information and first-hand experiences, delivered by a loving community of people eager to embrace them and their new child. That child and his or her family then continue to have access to seminars, social activities, educational and advocacy resources, concrete help like hot meals delivered to hospital rooms during illness or surgery…  Our local organization is also often asked to provide a speaker and educational materials to school groups, community organizations, classes of special education teachers in training, medical professionals… This is the voice of real experience for those who teach, interact with and treat people with Down syndrome. Our organization joins others to advocate at the local, state and national level for public policies important to people with Down syndrome.

All of this requires organization, planning and funds. This year, the Down Syndrome Association of Middle Tennessee raised just over $200,000 in Buddy Walk fundraising. Those funds make a concrete difference in our family’s experience now and in how Lina will be viewed and the opportunities available to her in the future.

But there is more to the Buddy Walk. The family and friends who joined us this year will tell you it’s a huge celebration, so full of joy and camaraderie. This is an open event where we take time every year to shout to our community and the world, “Down syndrome is not sad. It is not something to be apologized for or hidden away. We celebrate loved ones with Down syndrome because of what they bring to our lives and to this community.” It is an opportunity to counter stereotypes, to model open-armed love and acceptance, to mark progress, to share in a powerful community of people who know what this love feels like. It’s joyful, because loving a person with Down syndrome is joyful. Yes, it can be hard. Love is always hard, because it leaves us vulnerable and requires tremendous sacrifice. But every person in that crowd of thousands knows it’s worth it, because real, bone-deep, unselfish love always is.

I dissolved into tears just once during the Buddy Walk. It was at the end of the walk, as Lina stopped to give high fives and hugs to a troupe of cheerleaders with special needs. They adored her, and she gave unquestioning affection in return.

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My tears could have been mistaken for ones of fear and pain, and if I’m honest, perhaps there was some of that in there somewhere; but mostly, I cried then and still cry when I remember it because of how perfectly beautiful it was. I know the world can be a very cruel place, but here, there is simple joy in a hug. I thank God for these moments, because my soul will never be the same.

Buddy Walk highlights

Today was amazing. I plan to write more later, but for now, i’ll leave just a few photo highlights.

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A huge thank you to everyone who came out today and to all those who donated to support this cause. It matters a very, very great deal, to us and to the more than 4,000 people who came out today to celebrate those we love with that extra chromosome.

Quite a view: 2 and Under at GiGi’s Playhouse

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.

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Lina discovered there is a corner of GiGi’s full of books. The trick now will be to get her to play anywhere else.

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This little guy just turned five months old and was fascinated with the ceiling fans. Reminded me of Corin when he was tiny, smiling at the ceiling fans long before he smiled for us!

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This sweet girl has come such a long way since I first started coming to 2 and Under. I love getting to see her progress – look at that great sitting!

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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.

Kids on the move!: 2 and Under at GiGi’s Playhouse

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.

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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.

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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.

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.

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A much more peaceful Lina at home