I’m With the Band: A Backstage Pass to Down Syndrome Awareness Month

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October is Down Syndrome Awareness Month. Seven years ago, we were completely surprised when Nella was born with Down syndrome. Her diagnosis came with a lot of questions, fear and, yes, sadness because fear begets a gamut of overwhelming emotions that get reined in when we open ourselves up to A: understanding more and changing the way we view things, and B: LOVE.

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It took me all of two seconds to fall in love with my almond-eyed girl, and if we’re talking poker hands here, love is the royal flush, sweeping fear and sadness out for a triumphant win.

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Nella is pretty much like any other kid, and her extra chromosome is hardly recognizable in the activities that overall define our life–making family memories, learning about our world, traveling, planning adventures, exploring nature, progressing at school, creating new things and celebrating people and music and art and love. Nella’s extra chromosome presents a few challenges that we are continually finding ways to support and overcome, but it does not limit her from leading a meaningful, happy life filled with numerous milestones in which she contributes her strengths, talents, ideas and vivacious spirit to the world around her.

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I thought I’d answer a few questions about Nella and Down syndrome right now and use this opportunity to share some of my favorite photos of Nella in these seven precious years.

Down syndrome is the most commonly occurring chromosomal condition, and about 6,000 babies are born with Down syndrome in the United States every year.

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While a woman’s chance of having a child with Down syndrome does increase with age, 80% of children with Down syndrome are born to moms who are 35 and under (due to higher fertility rates). I was 31 when I had Nella, and we did not have prenatal blood work done to determine genetic abnormalities (we didn’t have it done three years earlier with Lainey either) nor did any other developmental concerns come up throughout prenatal visits and ultrasounds. Nella was born healthy and thankfully has had no major health concerns since birth. As with other kids with Down syndrome (and many without as well), we have monitored a few things more diligently with Nella throughout the years such as her eyesight, annual blood work and therapies to support her progression, but for the most part raising Nella is no different than raising our other two children.

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We pay attention to all the unique ways our children grow and need support, and we attend to areas where we recognize additional support is needed–tutors when they are struggling, one-on-one dates when they need a little extra attention, doctor visits when they’re sick, training wheels when they want to ride a bike but don’t quite know how, piano lessons when they’ve sparked an interest in music, teacher meetings when we’re noticing educational progress needs some attention, and all the efforts of arranging play dates and sleepovers when we feel they’re craving friendship and socialization. These needs and responses are universal to all children, and we’ve dealt with variations of them with Lainey and Dash just as much as we’ve dealt with them with Nella. That said, here are some of the things that feel important right now.

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The Value of Life

While we didn’t have prenatal testing for Nella, a prenatal diagnosis would not have changed the outcome for us (we wouldn’t have terminated) even though the news of that diagnosis was initially hard to accept.

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But prenatal testing has presented a lot of ethical dilemmas regarding Down syndrome, especially given the fact that modern prenatal blood testing is covered by many insurances, is safer and more accurate now and can determine genetic abnormalities much earlier in a pregnancy than previously offered testing. This has prompted a lot of discussion in Down syndrome circles regarding the future of our kids and our community as many have wondered if easier access to testing and earlier diagnoses would change abortion statistics. Separate from political stances on this (I vote for government to stay out of issues related to a woman’s body), I advocate for personal choices that recognize the value of life, especially when it comes to the value of life for a child with Down syndrome because I feel the focus is needed right now and because, hello, I have a child with Down syndrome and can speak with authority on the issue of her value and what she contributes to our world and those around her (how much time do you have?).

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While archaic stereotypes about Down syndrome are finally being replaced with a more normalized representation of it (thanks to a number of things including parents who’ve advocated, schools who integrate and include, television shows and advertising that represents people with disabilities, and social media that allows families to advocate and share their stories), there are still headlines (some debatable in accuracy such as the Iceland reports a few months back) that suggest the ways, as the Relevant so eloquently put it, “the sinister evil of ableism has crept into public policy.” How I wish I could talk to every parent on this planet who receives the news “Your test was positive.” How I hope our story plays a role, however small, in the days that follow that news and in the steps that come next in planning for that sweet baby’s arrival and anticipating what lies ahead. “Everything you’ve looked forward to from the moment you saw the plus sign on that pregnancy test?” I’d tell a waiting mom, “You still get it. Throw none of those dreams away.” Everything I want for my girl, from a supportive community and opportunities for education and employment to more parents who say “yes” to this journey no matter how afraid they are, is rooted in the belief that every life holds great value, and that people with Down syndrome contribute to society in so many important ways.

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That belief is one of the biggest reasons we continue to share our story. Peek into a little window of our lives, moms. See our joy, watch our kid learn to read, witness her friendships and her humor and the way we overcome obstacles like life intended for us to do. We look a lot like other families…just a little bit different. We need more stories shared of the joys and contributions of people with Down syndrome; more videos, more headlines, more positive information pulling up in Down syndrome Google searches and landing in people’s Facebook feeds. We need more doctors delivering news without a pitiful slant, more accurate up-to-date information about Down syndrome and the joys of families raising children with an extra chromosome placed in the hands of expecting parents. We need to continue to fight and advocate and share what we know to be true…that we are the lucky few.

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Why Inclusion?

If there’s one thing we know about the world, it’s that it is colorful, diverse and that we are all interdependent on each other, regardless of our differences. We flourish when we work together. Because our world is highly diverse, we believe our learning environments should model this. Providing and maintaining support resources for diverse styles of learning in an inclusive setting is not a gift–it’s a right and a civic responsibility. And countless studies support the idea that inclusion not only benefits students with disabilities as they learn best when they are pushed by their peers, but it benefits all learners.

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So many parents have told me how much they value having their children in Nella’s class and how much they are witnessing their child grow in interpersonal skills. What I tell all my kids is that their classrooms, their sports teams, their college dorms and the work environments for every job they’ll ever have in life are all going to be made up of a bunch of people that are different–they won’t all look like you, think like you, learn like you or respond to things like you. You’re going to need to learn to adapt, stretch, listen, help and recognize others’ contributions in order to truly succeed in life, so you better start looking for those opportunities now to practice.

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While inclusion drives our overall approach to education for Nella, ultimately, we tweak our beliefs and passion into appropriate variations based on our daughter and what she needs. The bulk of Nella’s learning experience is spent in an inclusive environment, but she does get pulled out for some individualized attention and spends a small amount of time with some other students who learn at a similar pace as her because we feel she needs space for this too.  We continually reassess all of this as a team based on her progress as well as her attitude, but overall, we strive for the most inclusive experience as possible because we know it works and because we want her prepared for the real world where we know she will do great things.

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What’s Our Biggest Challenge Right Now?

Each of our kids has various challenges they’re tackling at different times in their lives, and Nella’s aren’t any more important than her siblings’ challenges. That said, if you’re a parent of a child with Down syndrome, you might be curious as to what’s currently on our plate for challenges and how we’re dealing with them. There are, of course, specific learning goals like reading and sounding out more words, writing letters with legibility and performing math problems independently.

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More generally speaking, I’d say our greatest challenge right now is finding the sweet spot in combining what we expect of Nella, holding her accountable for those expectations, praising her for what she accomplishes and providing the right environment for her to succeed and feel proud of herself. She can be stubborn sometimes, and I find myself often questioning, “Is she being stubborn because she doesn’t want to try or is it because she truly doesn’t understand? Do we implement consequences? Expect more of her? Or does she feel defeated, frustrated that she doesn’t understand something when others seem to to grasp it?” (or reverts to being silly to divert you from noticing she doesn’t understand–stealthy tactic, smart girl :o) In these situations, we do three things:

1) continue our constant affirmations with her, reminding her that she is loved, she is safe, she is smart and that we believe in her and have seen her prove to us over and over that she can learn new things.
2) get creative in our instructional approach–if one approach isn’t working with her, we need to try a different way of introducing it.
3) stay patient and never give up. Milestones may take more time with Nella…but they always come with great celebration and appreciation.

Also, I just reread that paragraph, and that challenge and response also work for Lainey and Dash. This isn’t some unique secret struggle language for parents of kids with special needs. This is parenting.

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What’s the Biggest Challenge We Foresee in the Future?

For me personally, looking at the future of Down syndrome and what our kids will face, I am most concerned about job opportunities. While I am hopefully realistic about her ability to financially support herself, what I really want for Nella is the great satisfaction that comes from contributing her talents, ideas, time and skills to dignified work that fulfills her. Humans find meaning in work and validation in recognition for our work. I dream of this for Nella and her friends and commit to advocating for more employment opportunities. This is why I support and sing the praises of organizations like Ruby’s Rainbow and Project Search because they’re bridging a critical gap between high school and the overwhelming question of “What’s Next?” for so many families and chiseling some notable chunks in the wall of limitations that’s been present for so many individuals with Down syndrome. With more education and experience comes more opportunities, and I hope with more awareness comes the invitation for business owners and companies to explore and identify more jobs that can be filled by people with disabilities who will bring great value to their workforce, their businesses and their customers. And I own my responsibility of raising Nella to prepare her for independent work and these meaningful contributions.

Get it, girl.

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What Are Our Best Resources?

Good Lord, what did people do without the Internet? Navigating the world of special needs with a community of online friends has been the most incredible blessing to us, reminding us we are not alone but also giving us ALL THE TIPS from people who’ve done this before. Our biggest resource has been the network of friends we’ve met through online and mutual connections, and I now have a mental Roladex of moms I can call at any time for advice. When I recently traveled to Minneapolis with Ruby’s Rainbow to be a part of Kirsta’s launch to college, I had the added blessing of getting to know her mom. As she shared more about raising Kirsta when she was little and all the little things she did, tears rolled down my cheeks. “I’m YOU!” I said as I hugged her, “You’re describing my life right now!” She even pulled out a little trick for me to use with helping Nella’s wand obsession because Kirsta had the exact obsession when she was little.

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Now I have her number in my phone and converse regularly with her, a gift I feel so lucky to have. Build your community. Find parents you admire, reach out to Down syndrome networks and local chapters if you need help finding them, program their numbers in your phone, don’t hesitate to reach out. Read blogs that make you feel less alone, find people on the Internet, connect, connect, connect.

Best Advice for Raising a Child with Down Syndrome?

Remember that you are not raising a child with Down syndrome; you are raising a CHILD. What all of our kids need more than anything is US–to see them, guide them, challenge them, support them, fight for them and let them fly. Take one day at a time. Who is your child right now and how can you best be her mom today? Set high standards and make sure your doubts about what she might not be able to do never get in the way of what she’s capable of. Prepare to bowled over by new surprises and unexpected accomplishments. Think about the remarkable progress individuals with Down syndrome have made in the past 30 years–we are rewriting text books with new statistics every year–and be part of how we’ll do it again in another 30 years. You are not alone.

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Favorite Things About Nella Right Now

She’s so proud to write her name clearly, so she writes it all the time. I find “N e l l a” written in purple crayon on papers in my office, chalk-drawn Nellas all over the driveway, Nella, Nella, Nella on coloring sheets and homework papers reused to “play school”. Her sense of humor is sharpening, and she has a repertoire of funny shenanigans and phrases she pulls out, knowing they will make us laugh. She controls our Amazon Echo like a micromanaging boss: “Alexa! Play Look What You Made Me Do. Alexa! Skip this song! Alexa! Turn it up! Alexa, play it again!” Her body language has learned a little teenage sass–hip juts, head cocks and shoulder shrugs, appropriately manifested with an impish smile. She likes to “get cozy” in pajamas and would choose curling up on the couch with us, as close as she can get, to watch “Sing” any Friday night. Her imagination soars best when she’s playing Barbies, and her articulate speech and understanding of tone shines in the conversations she makes them have. We hear her making one Barbie say things to another Barbie like “Oh my God, you’re so funny!” or “Why did you do that? You hurt my feelings!” followed by “Okaaaaaay. I’m sorry. Let’s go to Target” (the savior of all things).  She’s attentive to directions and expectations of her and follows through on routines and tasks we give her like picking up her room, taking the dog out or putting laundry where it belongs. She can dance. Sweet Lord, can she dance, and when she’s dancing, her happiness is palpable. Her awareness of others’ feelings and her compassionate response to make people feel better is remarkable–beyond what I’ve seen for her age. “Mom, Dash is crying, come here,” she’ll tell me as she leads me to him. No one’s allowed to be sad in our house without Nella next to them, patting a back, hugging, whispering “It’s okay. It’s okay.” She’s eager to show us her accomplishments, pulling papers out of her bag, singing songs she’s learned, telling us about her day and her teachers and proudly exclaiming three of her favorite words: “I did it.” She gives love selflessly and freely and happiness comes easy for her because she is so receptive to the beautiful things around her.

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I am forever grateful for the gift this child is in our lives. What a privilege it is to celebrate Down Syndrome Awareness Month with a backstage pass to the show. That band member? She’s ours, and I couldn’t be prouder of the music she’s making.

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To see some other families who are sharing their journeys with Down syndrome, check out these Instagram accounts (blogs in their profiles): Hannah Seadschlag, Amanda Booth, Lisa Eicher, Heather Avis, Nothing Down About It, That Dad Blog, Ruby’s Rainbow, Changing the Face of Beauty, The House of Wheeler, In Case You’re Down, and Rafi Grows in Brooklyn. There are so many more I follow and love–if you want to add yours or have an account you love, leave it in the comments!