What’s in a word?

March is a big month in the Down syndrome community. March 21 – 3.21, for three copies of the 21st chromosome – is World Down Syndrome Awareness Day, and there are usually several events leading up to that day. Today, for example, is dedicated to Spread the Word to End the Word, a campaign focused on helping people eliminate the word “retarded” from their vocabularies.

I haven’t posted a lot about this particular issue, because my feelings on this are a little complicated. Don’t get me wrong, it’s jarring when I hear people use the word “retarded” as a pejorative. I know the imagery it evokes, and it’s not flattering to people like Lina, who until pretty recently bore the term as a medical label. (It wasn’t until Obama signed Rosa’s Law in 2010 that “mental retardation” and “mentally retarded” were removed from government policy language.) The r-word as an insult draws a parallel between a type of person and something stupid and contemptible.  The words we use do affect how we think about and treat others. I don’t buy the idea that considering the feelings of others is too much of a “political correctness” burden to bear.

On the other hand, I get it. We are dealing here with language creep. There is a long history of words that refer to people with disabilities becoming general insults. We don’t kick up the same kind of fuss today about the words “idiot” or “moron” (though I would certainly discourage my kids from using them out of general kindness). At its most literal, “retarded” means “slowed down.” In that sense, it is an apt explanation of what happens for people with an intellectual disability, who generally take a little extra time to learn and process.

lina-eyesI have found it very helpful to operate based on people’s best intentions. I get that when it comes to any sensitive issue, many of us – myself included  – don’t always know what to say. The last thing I want is to make people so fearful of saying the wrong thing that they are unwilling to engage at all. Open dialogue is the only way to address the bigger issues at stake. I want friends and acquaintances – or strangers in the grocery store, for that matter – to feel free to ask questions in good faith. I want you, dear reader, to know that it’s okay not to know. The only real crime here is being unwilling to learn.

Which, I suppose, brings us full circle. While I understand that many, many people use the r-word without meaning any offense, its connotation can be very hurtful to a lot of people. So here’s the deal: I promise not to crucify you for unintentional offenses. I get that there are things you don’t know about people with Down syndrome. It’s okay. But I will urge you to learn. Be willing to ask questions, to get to really know people with disabilities, or, if that’s more than you can do, to at least read up.

Words matter because they refer to deeper things: to how we as a society view and categorize people. What are our deep-seated assumptions about a person with an intellectual disability, the ones we would never say out loud and may not even realize we hold? Do you really understand that every person with a disability is a unique individual who is loved and valued as a family member, school mate, coworker, friend and neighbor? Or are you unintentionally reducing people with intellectual disabilities to a caricature that makes them “other” and minimizes their humanity and value? Once we all have a handle on those issues, I have a feeling the words we use will naturally change to reflect our respect and understanding.

A ball for believers

If you follow my social media feeds, you’re probably already sick of seeing my pictures from last night’s GiGi’s Playhouse Believer’s Ball. I apologize if I seem overly exuberant. It’s been a long while since Jon and I have gotten really dressed up to go anywhere, and this was for a cause very near our hearts.

img_0442I’ve had a nasty sinus infection for more than a week, but I finally got antibiotics on Friday
and rested up as much as I could yesterday. I was determined to make this event.

If you’re not familiar with GiGi’s Playhouse, let me introduce you. GiGi’s is a network of
Down syndrome achievement centers. (I think the current count is around 30, including one in Mexico, with more opening all the time.) These are physical locations where people of all ages with Down syndrome and their families can gather for free therapeutic and skills training programs, socialization, one-on-one reading, math and handwriting tutoring and play in a fun and welcoming environment. Our Nashville GiGi’s is located in Brentwood, south of the city. As I’ve mentioned on this blog, I lead the Busy Bodies (previously 2 & Under) group for the littlest ones and their families. Lina has at different points participated in that group and a music and language img_0446class, and she and Corin now go every week to a Special Olympics Young Athletes event that focuses on beginning athletic skills. They LOVE that class. Most GiGi’s programs are led by therapists and experts in the areas they teach. Ninety-some percent of the people who work at our Nashville GiGi’s are unpaid volunteers.

When I talk to people about why GiGi’s is important to us, I go back to when Lina was a newborn and we were first trying to get our bearings. We had been introduced to the Down Syndrome Association, which offers fantastic resources for families. I was a little lost, though, on where to go to meet other families like ours. I wanted to connect in person with parents who had been where we were, but a support group felt too intense. Then I learned about a new place called GiGi’s Playhouse. At the time, we lived too far away to access GiGi’s as often as I wanted, but once we moved closer, it became a staple of our family’s social support system. As I’ve become involved as a volunteer, I have seen other families find in GiGi’s exactly what I was needing so badly when Lina was born: a place to connect, ask questions and find encouragement and support from people who just get it.

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Our girl on a centerpiece vase

In addition, GiGi’s is a big piece of Mission: Lina’s Future. It’s the answer to questions like, “What do we do to support Lina’s progress over the summer, when she’s not in school?” The answer: Sign her up for one-on-one tutoring and therapeutic programs at GiGi’s. “How do we make sure she and Corin have social support from people who understand their specific experiences?” The answer: Build a network of GiGi’s friends. “How do we support Lina’s independence as she grows?” The answer (or one piece of it – obviously this is part of a much broader plan): Get her involved in job training and social and therapeutic programs for older kids and young adults at GiGi’s.

img_0455GiGi’s works hard to build business and personal relationships in the community to educate and open doors for people with Down syndrome. These partnerships have allowed young adults with Down syndrome to learn floral arranging, become active members of a local CrossFit gym and find jobs at restaurants, businesses and even the Tennessee Titans. There is so much more I could tell you, but I think you get the picture: GiGi’s Playhouse is awesome.

The Believer’s Ball was a fun night out for a couple of parents who needed it. But it was also the biggest source of funding for the year for a place that makes life tangibly better for Lina and our family. So thank you to the many people who worked incredibly hard to organize the gala, to the many businesses and individuals who sponsored the gala and donated auction items, and to everyone who came out, bid in the auction and made generous donations. I hope you know how much it matters to a lot of families like ours.

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?

Year one of preschool – check!

Today was Lina’s last day of preschool for the summer. I have been surprisingly emotional about this. She has come such a long way since she started in September, and I have so much love and gratitude for her teacher, aides and therapists who have helped that happen. It’s also one more of the endless reminders of how quickly time is passing.

We had Lina’s IEP meeting last week to set goals for next year, and I came away so encouraged. The people who gathered in that room love Lina dearly, and the IEP goals they drafted tell us they have the same high expectations for her that we do. When I said it was my personal goal to have Lina reading before she starts kindergarten, heads nodded all around the table. I know she can do it, and even better, so do they. Lina has a team of six consummate professionals – her teacher, two aides, and speech, occupational and physical therapists – all working together to make sure she is able to reach her full potential. Her school is in a county that believes and invests in high-quality, inclusive education for all students. No school system is perfect, and I know IEP meetings will get harder as Lina enters the more challenging general education setting in elementary school. They’ll probably get harder again with each new stage of her education. But I am so thankful that she is getting this start, with these people at her side.

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Party snacks!

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Her beloved speech therapist, Ms. Jody

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Our favorite preschool teacher, the fabulous Ms. Meri

 

 

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.