Happy World Down Syndrome Day

It’s 3.21, which means we celebrate all the awesome people in the world who rock that third copy of the twenty-first chromosome!

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If you’d like to join us in celebrating, we encourage you to visit Kelle Hampton’s blog and take the 3.21 pledge. Your donation goes toward funding grants for college students with Down syndrome. That’s right, I said college students. Read the blog – this is awesome stuff!

Highs and lows

Today was a perfect illustration of how parenting a child with special needs can be a bit of a whiplash experience.

We’ll start with the low.

I mentioned that Thanksgiving induced a hair pulling relapse for Lina. Last Tuesday – her first day back to Mother’s Day Out after the holiday – her teacher greeted me at pick-up with a report of a day spent terrorizing her classmates. Today, I was met at pick-up by the program director. Yeah. Never a good sign.

She was very sweet, but the tone was serious. They plan to bring the special education teacher into the room to observe and hopefully make some suggestions on strategies. (She is normally a teacher in Corin’s room.) I talked to the director about what we’re doing at home, and she admitted that today had been better than last week but didn’t hold back from a series of dangling sentences: “If it doesn’t improve, we may not be able to… Not that we’re even close to that yet, so I don’t want you to think… But I need to let you know that if it doesn’t improve, she won’t be able to…” I understood the warning very well.

Believe me, I get why this is a problem. It’s a sensory issue without a quick fix. My girl has a death grip, and it is horrifying to see her attempting to yank hair out of the heads of small, helpless children who invariably manage to look simultaneously confused and pain-struck. It’s a problem at home, too, and we are working hard on it. We’re regaining ground, and I think we’ll get back to a much better place. I don’t expect it to result in Lina actually getting kicked out of Mother’s Day Out, but you can imagine how the entire exchange made me feel.

The good news is the day didn’t end there. Tuesdays, we head straight from Mother’s Day Out to speech therapy at Vanderbilt.

And man, did Lina kick some speech therapy butt today. Her attention to task was phenomenal, she was consistently responding appropriately with words or signs to questions and prompts, her vocabulary had expanded, and her whole manner of communicating was well ahead of where she was just a week ago. Her therapist was floored. I wasn’t too surprised; after all, as I was getting her ready for nap time yesterday, she told me, without prompting, everything she’d just eaten (her version of “cheese,” “raisins,” and “crackers”).

And so it goes. There are highs and lows, sometimes right on top of each other. The thing I’m learning about having a kid with Down syndrome is the struggles are not so different from parenting any kid. It’s just that Lina’s timetable is slower, and her challenges are magnified. But her triumphs are magnified, too. It’s like trying to explain to a person without kids why having them is so hard but also so amazing. Parenting a kid with Down syndrome is really hard. It’s also really amazing. And just like in that conversation about having kids, the take-away is unequivocal: it’s absolutely worth it.

Baby steps

Lina has taken a couple independent steps several times over the last few days. I feel like she keeps teetering on the brink of really taking off. Her physical therapist sent us home with a walker this week so she can keep practicing and improving her strength and confidence. She’s a pro at standing independently, but the therapist thinks it’s just a matter of that extra bit of strength and confidence to balance on one foot as she steps forward. She has a great foundation of good technique and all that bilateral crawling is actually fantastic for brain development.

Lina is in an interesting in-between stage right now. She’s not really a baby, but because she isn’t walking yet, it doesn’t seem quite right to call her a toddler. Her receptive language in particular is improving, and there are small gains with her expressive, though her therapist thinks that is taking a back seat as she focuses on gross motor. (Just one more reason we’d really like to get that girl walking!) Her play is changing significantly, which her therapists credit to her time with typical peers at Mother’s Day Out. She engages in more focused and pretend play with toys, rather than just exploring them and then throwing them aside (although she still does that some, too). She might pretend to feed me and herself with her baby’s bottle, or spend more time actually driving a car around on the floor, or maybe put people in the proper spots inside the bus. She might be able to focus long enough to put shapes in the proper spots in a shape sorter. We still haven’t gotten much traction with puzzles, and attention span can still be a challenge at story time, though she usually will sit through her favorite books at least once.

We’ve also been experiencing a big recurrence of hair pulling. She’d been doing much better until Thanksgiving, when the house was full of unfamiliar people and constant noise, and my poor little 22-month-old nephew was right at her level with his tempting locks (regrettably now much thinner than they were). The overstimulation set Lina back a long way on this one, and her Mother’s Day Out teacher reported that she terrorized everyone in reach on her first day back post-holiday. Here our tender scalps were just recovering… Back to the slow, steady “redirect and reinforce” approach.

Her sense of humor keeps growing, as does her desire to imitate. She can express herself loudly, especially when she’s frustrated. She loves to use song motions to communicate. For example, she points to her face for happy, as in, “If you’re happy and you know it, then your face will surely show it.” We also get a lot of the round and round motion for the wheels on the bus, and the occasional itsy, bitsy spider thrown in for fun.

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I’m not going to lie: her slower pace of progress can be very frustrating. My arms can testify to the challenges of lugging around a two-year-old (albeit a small one). Inside our little family, we celebrate each step, each sign of progress, each little milestone and feel gratitude and pride in her achievements. It gets harder when we’re in public and strangers ask her age; I brace myself before responding, knowing they are expecting a child much younger. It gets harder when she’s side-by-side with her peers and obviously not at their level. It gets harder in the little kids’ class at church, where managing her short attention span, toy throwing and hair pulling demands every ounce of energy I have.

I was thinking about this the other day as we were driving home from an outing, and I felt an almost overwhelming urge to rush her home, hold her close and never leave the house again. I suppose every parent experiences the urge to shield their children from the harsh realities of the world, but I find that to be magnified with Lina. I know it’s an urge I will have to fight her whole life, as I encourage her to take those baby steps to each new milestone, out into a world that will not always greet her with the love and understanding she finds at home. It pierces my heart to know someone might even be thinking something unkind about her. I can hardly stand to contemplate the jeers and misunderstanding she may encounter as she grows and ventures out from the nest.

But just like with Corin and with every parent and child, it’s my job to equip her for that big, wide world. I know full well that sheltering Lina at home would do a tremendous disservice, to her and to the world she will enrich. She needs my full-voiced support urging her forward, giving her the confidence for each of those steps forward. Our family will always be a safe haven, but it has to be a launching pad, not a hideout. The trick is to find ways to work now to make the world the place I want it to be for her. I suppose that’s why I keep writing and posting pictures here.

For now, when parents ask if she’s walking, I smile and say, “She’s working very hard on it.” When other kids her age race by her, I am thankful she has them to imitate. When she won’t stay on the blanket at story time, I sit with her, knowing she learns through constant practice. As I exercise patience and cheer Lina’s baby steps now, I know each one is a tiny step toward the future we dream of for her.

Nobody’s consolation prize

I was reflecting again recently on how my perspective has evolved since Lina’s birth.

I look at Lina now, and I see a beautiful little girl, growing and learning every day at her own pace, just like every child does. I see a precious individual, a priceless gift to our family. I look back on my pregnancy and her birth, and I no longer feel loss. Instead, I feel only the joy of her. I absolutely cannot imagine having any other baby. She is perfect for us, the child we hoped for and dreamed of for so long. She is in no way less than: not less than any other child, not less than the imaginary child we expected. She is complete and amazing.

I used to read similar thoughts from parents of kids with disabilities. I would nod and think, “That’s so awesome and so true.” But I realize now that deep down, those parents sounded to me like second place contestants trying to be okay with the consolation prize. I thought they were being brave.

I’m ashamed of that truth. And sometimes, I’m ashamed of the grief I felt after Lina’s birth. I know in my head that it was necessary and healthy to grieve the baby I thought I was having and to mourn the more difficult path that lay ahead. I realize that stabs of pain and grief will continue to be a part of life as Lina’s mom. (Pain and grief are probably guaranteed in the life of any mom.) But in some ways, that initial grief feels so out of place now. Why would I grieve this amazing child? I look at her, and I feel pride and joy. Disappointment has no place between us.

This has been my journey. There’s a lot more to travel yet; we’re really just getting started. I am not brave or extraordinary. I am a mom who loves her kids like crazy. And though it no longer feels necessary to say, I’ll state for the record: Lina is nobody’s consolation prize.

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Monica and David – and Lina

Last night, Jon and I watched Monica and David.

Jon bought it for me last Christmas, and it has taken us this long to watch it. We both wanted to see it, but we also feared it more than a little.

It’s a 2010 documentary film directed by Monica’s cousin, and it is the love story of two adults with Down syndrome. It follows Monica and David from their wedding through their first year of marriage, filling in back story and sharing an intimate view of the families who support Monica and David in their efforts to live as independently as possible.

The movie does not gloss over the complexity of the situation, and it was that that kept us from watching it sooner. What if it brought too much to mind our greatest fears, rather than demonstrating our highest hopes? This worry has become very much a part of our lives in the last 14 months. We often feel that tension between wanting to see and be encouraged by adults with Down syndrome, but also fearing too much exposure to the challenges that lie ahead. We know challenges will come, and we certainly talk about them as we discuss the future, but we have chosen not to focus on them. Instead, we focus on how much is possible for Lina; we dream very, very big. We instinctively shy away from anything that might cause us to impose limits on her or what is possible for her future.

The movie was beautiful and ultimately more encouraging than discouraging. I have been thinking about it a lot, and about what it says to me about Lina. There were parts that were painful in their reminder of the realities of intellectual disability. But Jon and I both found plenty of hope in what these two people have found in each other and the life they are forging with a lot of support from people who love them. We could identify with and understand so much about their parents, and we also saw mistakes we hope to avoid.

We were reminded how fortunate we are to be raising Lina now, in a time of great progress in medical care, research and attitudes. In 1983, the life expectancy of a person with Down syndrome was 25. Twenty-five! That life expectancy has since nearly tripled, to 60. Tremendous strides in research are being made, including the recent announcement that scientists were able to turn off Down syndrome genes. (That admittedly brings up another very complicated discussion, which I may tackle here one of these days.) Thanks to the tireless efforts of so many in the Down syndrome community, societal attitudes are changing and people with intellectual disabilities have more opportunities than ever before.

The movie also reminded us of things that still need to change. Monica and David both had a strong desire to work, but it was a significant challenge for a number of reasons. One of the special features on the DVD delved a little more into the issue of employment for people with disabilities, and I did some of my own digging. The U.S. Department of Labor Office of Disability Employment Policy reports that in October 2013, the workforce participation for people with disabilities was 20%, compared to 68.5% for the general population. That’s pretty dismal, and I know the number is much lower for people with intellectual disabilities.

We don’t get discouraged by those kinds of numbers, though, because Jon and I operate from a very firm conviction that Lina is exceptional. Maybe we’re being naive. I suppose some will think so. But we continue to believe that by holding firm to that conviction and providing all the resources we can find, we will infuse Lina with the courage and give her the tools to do amazing things.

Perhaps more than any other takeaway, David and Monica was one more demonstration of a lesson I am still learning in a whole new way: people with Down syndrome are, always and above all, people. There is so much more that makes my child like any other than makes her different. I used to think I knew this, but I didn’t, really. Now I am living it. I know that my child, like any other, is going to forge her own path in life. I will do all I can to guide and equip her, but ultimately, Lina’s future is her own. I firmly believe that, through the grace of God, it’s going to be a beautiful one.

Support Team Lina!

Sorry to make this blog fundraising central for the next few weeks, but I will be posting regular reminders that we are raising funds online for the 2013 Buddy Walk on October 19. The majority of funds will go toward essential programs for people with Down syndrome and their families here in Middle Tennessee. The Down Syndrome Association of Middle Tennessee is doing great work, and our family directly benefits from their efforts. A small portion of funds will also go to the National Down Syndrome Society, which is doing great work at the national level.

DONATE HERE

I am in birthday party planning mode this week. In the rare quiet moments, I marvel that in two days, my Lina will be one year old. It doesn’t seem possible. I have a lot to say about that, but I’ll save it for an upcoming post. For now, I’ll just say that she is an amazing gift to our family, and we are so grateful for the support resources our community offers for her and families like ours. These organizations depend on the generosity of people who understand the importance of what they do. Your donation will mean the world to us as we celebrate one year with our sweet girl. THANK YOU for helping us reach our very optimistic fundraising goal!

And local people – come out and walk with us! It’s FREE if you register by September 19. We’re going to have a great time strolling around Centennial Park with a lot of other awesome people. Celebrate with us and be an in-person member of Team Lina!

REGISTER TO WALK HERE

Team Lina!

The Buddy Walk is the biggest fundraiser every year for our local Down Syndrome Association, and I hear it’s a really fun experience to mix with so many other local families in the Down syndrome community. Last year, Lina was just a few weeks old, and it was just too much for us to make it out. But THIS year, we’re going to do it, and we’re going to do it right!

On October 19, we’re going to get as many friends and family out as we can to walk with us as part of Team Lina. We’re going to have T-shirts, we’re going to have fun, and here’s the part where you long-distance folk can get involved: We’re going to raise money, starting now.

The Down Syndrome Association of Middle Tennessee is a tremendous resource in our community for people with Down syndrome and their families. From the moment a new little one with Down syndrome is born (or before, in the case of a prenatal diagnosis) all the way through adulthood, this organization provides support, education, advocacy and a wide range of programs and resources. The DSAMT is doing essential things to improve life for people with Down syndrome and to help our broader community be a welcoming and accepting place for so many people like Lina. We are excited about this opportunity to help in the work they do.

So, dear readers, I am asking: Help us make this difference. Whatever you can afford to give will be so very appreciated. Be a part of Team Lina! Donate to our Buddy Walk fund, and help us fuel the changes that will make life just that much better for our Lina and so many others.

DONATE HERE 

Rocking our socks

This gallery contains 26 photos.

I solicited mismatched (or, as Corin calls them, “matchbox”) sock photos from friends and family in honor of Lina’s first World Down Syndrome Day, and the response has been so awesome. I could say a lot of things about the metaphor of the fabulously fun and very different socks that are still fundamentally more alike […]