Down Syndrome: Where We Are Now

I’ve been meaning to write this post for a little while now. I frequenty receive e-mails requesting how Nella’s doing, what therapies we’re using, where we are on this journey with Down syndrome, and I tuck them away with the intent to respond to as many as possible in one post. For past posts responding to questions about Down syndrome, you can look here and here or click on the “designer genes” tab on the right side of this blog to see a list of posts regarding Down syndrome.

Three years isn’t nearly long enough to truly understand all the issues within the world of Down syndrome, but it’s long enough to understand what I feel is most important–that there is so much this little girl has to offer the world and that we possess the unique privilege of helping her believe and achieve that truth. And in doing that for our little girl, we’re going to learn a lot about how we can help do that for others.

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Today, Nella is three-and-a-half years old. She is healthy, growing and eats pretty much whatever we give her, but her favorites are spaghetti, yogurt, popsicles and ice cream. She can run fast, jump, ride a tricycle (just starting!) and Lord have mercy, can she dance. Arms in the hair, hips to the side, bootie right down to the ground. Dance is her language–spoken so fluently that sometimes when I watch her in those moments where her body is so clearly feeling the music and expressing the happiness in her soul, I’m brought to tears. That’s how I want to live my life, I think.

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We still receive occupational and physical therapy each once a week from the husband and wife team who has been working with Nella since she was teeny tiny. They are like part of our family. For physical therapy, Nella is working on a lot of toddler play activities like riding bikes, throwing and catching a ball, etc.

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For occupational therapy, we continue to work toward school skills like holding a pencil, drawing shapes (not there yet), copying lines, cutting paper, etc.

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Brett and I have noticed over the past three years that there are great peaks in her development that will last for a few weeks where there are so many new discoveries, new words, new tasks, but that there are also plateaus where she needs time to chew on what she’s learned and chill out for a while. Brains need breaks, I get it. I have also noticed that Lainey has peaks and plateaus in her discoveries too. Yes, maybe they’re different and more significant, but usually these “Down syndrome things” that we deal with are versions of “Not Down syndrome things” every kid deals with.

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We are in a peak right now, celebrating a beautiful burst in her development. She’s talking a lot more, and every week there’s a moment where one of us says something along the lines of, “Oh my God, did she seriously just say ‘Lainey took my book’?? Did you hear that?” and Brett and I will both run over, smiling, clapping, asking her to repeat it. Those moments? They belong to our whole family. They are special. They are marriage-bonding and family-appreciating. We might have old tile with dirty grout, but I’ll be damned, our three-year-old just said “Lainey took my book”!

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We have two years before kindergarten still, and right now we are planning on sending her to public school when that time comes. We both feel home is the best place for her this year, especially since we are able to swing it. I’ll be doing some homeschool preschool work with her and will be introducing more socialization opportunities with ballet and more structured playdates. We are hoping to do a couple mornings a week at a small preschool next year to help make the transition to kindergarten a little easier. During the transition out of our Early Steps program (at three years old), we had our first IEP meeting with the public school, and I was so pleased with how kind and helpful every individual we worked with was. I’ve heard from many of you sending your kids with Down syndrome off to school for the first time this year, and I’ll be honest–there’s a little heart lurch thinking about it. So much good awaits–I know that, but yes. There’s that place inside where we hold any apprehension, fear and sadness for the extra challenges our kids will face, and sending our kids to school creates vulnerability–opens the door a little wider to that place inside.

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I want Nella to have as many opportunties as she can to live a happy, fulfilling life. I cannot change the physiological parts of her body that limit her, but I can do what mama bears do. We love like it’s our job. We work hard. We push our kids so that they learn how to survive because when they survive, we survive. So, I push her. I push her to try new things, to explore the world, to meet new people and to be adventurous. Right now, we’re working on letters and words, and I try and use every opportunity to drench her precious brain with information. I was given a great curriculum to use a few weeks ago from a mom and former teacher who developed Wordy Worm after struggling to teach her son with Down syndrome how to read. Her son is now in his thirties, lives independently in Fort Myers and has a great job and fulfilling social life. I love this easy-to-teach curriculum, and can’t stress enough how important it is to begin teaching literacy strategies early.

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I know this as a teacher, as a mom, and as the humble student of so many incredible parents who are ahead of me on this journey. Drench their beautiful little brains with knowledge and experiences and don’t think for a hot second that your child can’t learn.

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This past year, I’ve spent a lot more time with adults who have Down syndrome, and I’m learning a lot. I can’t even explain it, really, because I’m in the middle of it. My heart, my perceptions, my ideas on all of this–they’re being molded right now, so there’s an “Under Construction” sign hanging somewhere within.

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Having a pretty public blog and being recognized in the special needs community, I try to be aware of politically correct terminology and sensitive issues. I’ve backspaced posts and held back from saying things many times because I’ve thought “that’s going to offend someone” or “they’re going to think–” too many times. I’m really trying not to do that anymore. Whether you like the way we’re handling Down syndrome or not, whether you think I’m a good advocate or not, if you’re in the special needs community, let me tell you something: We’re in this together. Can you hear me? WE’RE IN THIS TOGETHER. We’re figuring it out. We’re all hurting in some way or another because we know our kids have struggles. That bond in some way makes us family. I promise I don’t ever mean to hurt any of you. But we need each other. Our kids need us–ALL of us. And we’re going to think a lot of different things, some that contradict each other. But I’d like to think that someone out there needs to hear something that each of us has to say. If you say it’s blue, there’s someone out there who needs to hear it’s blue and you just made their life so much better by being blue. Thank you for being blue, even if I’m not. If I say it’s green, there’s someone out there who needs to hear it’s green, and thank God we can be green together. Blue and green are both good. I’d hate for the world to lose one of those colors.

I know I’m rambling. I’m sorry. But there’s just so much I’ve been wanting to say.

I’m in a constant place of figuring this out, and based on the way I’ve grown, the things I’m learning, the love I’ve felt–well, I hope I never graduate from figuring it out, because this is such a good place.

I know I don’t specifically write about Down syndrome a lot because I don’t specifically think about it a lot. I have three kids. I take pictures of them. I like happy things and funny things and colorful things and pretty shoes. I will write about those things. And sometimes I’ll write about hard things when they come. That’s about all I can offer. But when I feel like there’s something about Down syndrome I’d really like to share, I’ll bring it here for you, and you can do what you like with it. I bet there will be a lot to write about when Nella goes to school.

Life has changed a lot in the past three years, and we continue to move forward, exposing our kids to the world we want them to know and following our own paths of exploration. Does it still hurt? Well, early this summer I did a three-day recording for the audio version of Bloom. It was the first time I ever read it aloud and the first time I even looked at it since the last edit. I smiled through a lot of parts that I’ve moved on from, a different girl with growth. But that part when she was born? That line where her eyes first looked at me and asked me to love her? I couldn’t do it. I choked five, six, seven times in a row–unable to speak, catching my breath, paralyzed by the weight in my chest until finally I asked the producer on the phone line to give me a minute. “Take all the time you need,” he said. Yeah, it’s still there. And I’m so thankful that it is. It’s part of who I am. It’s part of who our family is.

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We all have our pain, our issues, our struggles that make us who we are. I value mine. I need that pain and struggle to contrast all the good, the growth, the happiness. Juxtaposition–an important element of art.

Having a child and loving them so desperately turns you inside out. There’s no greater pain than knowing that your child is hurting, and that’s what this is all about–we don’t want our kids to suffer. Having a child with physical and mental challenges means that there’s going to be added suffering, and I carry that with me every day.

The best way I know how to deal with that is to accept Nella for the beautiful girl she is and to make every effort to help her soar, to live a life of enjoying the things that were given to us so that my child learns how to do that too. And if I can make a dent in the world around me, possibly inviting them to accept people with differences and make efforts to help them soar–well that would be awesome.

So in closing this post, thank you for joining me in figuring things out. The world is beautiful, huh? Let’s continue to make it that way–for every person. Blue and green, baby.

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And a little video of Nella learning: (sidenote: the puppet in the video is one of Nella’s favorites. A while ago, I did this funny thing in the morning where I made the puppet go get me a cup of coffee and Nella helped pour the half-and-half. Now every single day, Nella brings me the puppet and says “C’mon, coffee,” wanting me to repeat the exact same routine. So we do. Every day.)


So much love to all of you tonight.

Six Years: Secret Agent Party

It’s been an event filled week–the kind that seems impossible to hold all that it did; but here we are, the Monday after, and there’s a mind cellar full of newly canned memories to last us a very long time.  Thank God I got the analogy of the day over with.  That was stressing me out.  Moving along…
More later on reuniting with old friends.  For now, someone had a birthday this weekend–the little someone who transformed years of dreaming about being a mama into reality.

Our girl is six. 

After my dad gave her a giant fake diamond for Christmas and we used it as a prop in “Find the Missing Diamond” secret agent games, she decided she wanted a secret agent birthday party this year.

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And my dad thought it was so cool that Lainey was born in 2007, the last three digits being 007, of course. Whoa, right?  I mean, we had to do the secret agent thing at some point.  So, a roll of crime scene tape and a few fake passports later, we had ourselves a TOP SECRET soiree for the C.I.A.’s newest agents.

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Cupcake toppers: Top My Cupcake Etsy shop

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With utmost attention to protecting the agency’s classified files, all new secret agent recruits were welcomed with thorough background checks.  Alias creation (ranging from sophisticated names like Rebecca to imaginative alternatives like Sparkle and Stink Bomb), fingerprinting, print scanning–we don’t mess around here at the C.I.A. 

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Very cool app called Finger Scan that makes you feel all Mission Impossible.

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Once all agents were cleared, we set off to follow a series of clues to solve the mysterious case of The Missing Diamonds. 

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Left: A password hidden in one of the agent’s hats.

After finding some evidence of shed fur, a few dog food kernels and a leash hanging from the tree, the agents concluded Sophie & Latte stole the diamonds.  Until a sweet little wide-eyed girl piped up, “But how could dogs steal diamonds?  They don’t have any hands!”  This is true.  This is true. 

But they have good digging paws which came in handy when those sneaky dogs buried the diamonds in the woods.

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Moral of the Story:  Kids are smart.  Or something like that. 

And the rest goes something like a good party means the house gets trashed.  I’m still picking up from the house being overtaken by little agents, but it was worth it.

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Inexpensive table cloths: Cover tables with butcher paper, stamp it everywhere with a CONFIDENTIAL stamp, roll a line of crime scene tape down the middle.

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And look–our youngest agent. 

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Coincidentally, this weekend’s recruit training included sleeping through the night for him (twice!). So yes, Agent Dash has been promoted.

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I’m finding mustaches stuck to everything, and Lainey now wants every activity to include clues.  But it was a good day followed by a sweet night of remembering just how incredible these past six years have been.

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Kids clothes have a toddler “T” that follows all the sizes until size 6.  Then it just stands there all alone, no “T” to soften the blow of this-kid’s-getting-big.  It comes with so much good though, and as she grows, so do we. 

Another birthday.  More Love.

Happy Monday, Friends.

******

Party Details: 

All print goods I made.  I used Top Secret free font from DaFont.
Fedoras, magnifying glasses, passports, glasses (popped out the sunglass lenses), white lunch boxes, mustaches, black notebook and pen sets: all Oriental Trading.
T-shirts: 5-pack white Hanes t-shirts, painted black tie.
Party Music: Downloaded Mission Impossible and Secret Agent tunes from iTunes

And thank you to Heidi who took most of the pictures in this post so I could tend to C.I.A. duties.

A Faith for my Children

Five Children’s Bible Books. That’s what I found tucked away on our overstuffed bookcase this weekend while cleaning and sorting our ever growing stash. I have to admit, I didn’t buy any of them. With the exception of one that came from a sweet group of readers I Skyped with last year, I think grandparents can be accounted for the rest—gifts that carried the subtle plea of Dear-God-please-don’t-let–my-grandchildren-grow-up-heathen.

It’s not that I need the little Bibles to learn the stories in them. I know every single one of them by heart—how Adam and Eve were created on the sixth day, how God sent a rainbow after saving Noah from the flood, how a great big whale swallowed Jonah because he wouldn’t go to Ninevah to preach God’s word. These stories were taught to me from early Children’s Bible days of giggling at pictures of fig leaves covering Adam and Eve’s—ahem, privates— to somewhere in my early twenties when I stopped going to church.

I flipped through the pages of a few of them yesterday and tried to remember the last time I read these to the girls. By Lainey’s age, I not only had been read these stories and sang their tunes (“Who Built the Ark? Noah, Noah!”), but I knew their lessons—yes, that God loved us, but also: Don’t Piss Off God. He might send a flood or turn you into a salt pillar.

The latter lessons are the reason teaching faith to my children is a complex subject, one I stew over quite a bit. I was submerged in church for more than half my life, experiencing both the good—fond memories of flannel graph Sunday school lessons, church potlucks and Nativity plays—as well as the screwed up: fear, fear, judgment, fear. Oh, and we-are-superior-to-those-who-don’t-believe-like-us. The combination makes for a hell of a faith identity crisis. It’s taken me years to reprogram my brain and heart and replace the painful scars of judgment and empty guilt with love; even now, I struggle.

For a long time, I viewed my faith issues much like I view my house when it gets too messy—I stand back, take it all in, conclude the mess is too overwhelming, so I make a cup of coffee and walk away. But then I had babies and babies started growing up. And when babies start growing up, you begin thinking about everything you believe—how it matters, how it transfers, how the responsibility of passing things on suddenly bears weight. For six years, I’ve been asking myself “What do I believe?” Because, honestly…I don’t know. I do know that I believe in God, that God is Love, and that there’s enough truth in that statement to provide everything I need to teach my children about faith.

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My friends and I have been talking a lot more about these issues as our kids are at the age of asking questions. Last week, Lainey and her friend Aleena were overheard discussing heaven—how when they went there, they’d make sure to take their favorite toys and blankets, as if it was just a summer road trip. Heidi’s daughter pointed out an image in the story of Noah’s Ark in her children’s Bible last week—a picture of a woman standing on a rock, holding a baby while flood waters swirled around her—the “unsaved,” apparently.

“What’s going to happen to that woman and her baby?” Peyton asked her.

“I didn’t know what to say,” Heidi admitted. “So I told her Noah was going to swing the ark back around to pick her up—he was on his way.”

I smiled. “Bravo.”

This is the exact reason why I’m not so sure of what role the Bible—the book that literally guided every decision and thought in my life for years—will play in lessons I teach my children. And my former self would be quivering with fear right now for the blasphemy I just typed. I did that a lot—quivered with fear. Say the word “rapture” and my knees go weak. Among meaningful stories of love and kindness, there are a lot of passages in the Bible that make God out to be He Who Demands and He Who Punishes. And for fun, He Who Tests You to See How Much You Love Him. As a mother who understands a little bit about loving children, these concepts aren’t things that align with the ultimate truth of parenthood (that’s what God is, after all)—Love.

I know that I want my children to know the limitless love of God.

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I also know that I want my children to know their worth—worth that doesn’t hinge on things they do or the way they believe.

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Although I believe in God and am confident of his presence in my life, I have a hard time teaching my kids statements like “we are nothing without God” or “you won’t know the answers until you ask God to help you.” Those teachings crippled qualities within me for years and, for a long time, paralyzed me from thinking for myself. I want my children to know that God made us all equal—that we are amazing from the start, that we are equipped with greatness and good decision making capabilities just because we exist. There are plenty of people who don’t, per say, “believe in God” who are living their one wild and precious lives with significance—founding organizations to help those in need, spreading kindness, choosing good, loving, loving, loving every day. They are happy and living a life with purpose. Their God might not be defined by my terms—perhaps they call him a higher power, the Universe, their inner self, what have you. But they are in no way less deserving of what we all are entitled to—love, albeit here on earth or life after death. I will tell my children to learn from these people and listen to them. Sometimes I think I’ve learned more about God and love and kindness from good people who believe differently than me than I ever learned within the establishments intended to teach the world about God.

But I also realized I’ve made the mistake of throwing the baby out with the bathwater, as they say. Because of the pains of my past, for a long time I blacklisted all of it—organized religion, church, Bible studies. I thought I escaped the black hole all these people were tricked into believing, and I realize that’s just the kind of judgment I thought I was better than. Thinking I’ve got the truth, and they don’t. I left one kind of arrogance and replaced it with another.

I’ve since readjusted those beliefs, picking up a lot of the broken pieces of the faith of my past and realizing they’re not all bad. I quite like many of them and look forward to reincorporating lessons and experiences of that old faith into the truest faith I’ve known so far—an evolving one. One of love and kindness and acceptance both for those around us and for our less than perfect selves. I like feeling small compared to something, someone bigger, and I call that bigger thing God. I pray to him every day not so much in “Dear Gods” but in Be kind, How can I help?, Come sit by me, Let’s take a walk, Look at that!, Thank you, I’m sorry and I love you.

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What my Sunday morning looks like:  God is very present.

I am truly learning this year to open myself up and learn from others—to listen; to be curious, not judgmental. In my closest core of friends, I have a few Protestants, a few Catholics, an Atheist, two Agnostics, a Buddhist, a Hindu and several who don’t have names for their faith. I am intrigued by each of their beliefs and learn from all of them. It’s amazing how, when we look at our beliefs with different perspectives, so many of us really do believe in the same important life truths.

So, what to teach my children?

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Well, just in typing this, I’m feeling confident that my children know God. You know, last year I had this random moment of guilty panic that I wasn’t telling my kids the things about God that I was supposed to teach them—the Sunday school basics, the Children’s Bible stories I wasn’t reading to them. We were driving, and for some reason, I suddenly felt like I had to do something to catch up for all my kids didn’t know—something right now in this car to get it started. We’d begin with creation.

“Lainey, do you know who made the trees?” I asked her. She looked at me like I was crazy. She didn’t answer so I went on.

“God did. God made the trees,” I told her, repeating something I had been taught as a child and consequently sighing a breath of relief for completing the first course of Godly wisdom for children. The grandparents would be so proud.

But there was a rebuttal from the back seat.

“No he didn’t,” Lainey argued. “Someone planted them.” Ah truth, my little Darwinist.

I realized I was being silly. The details of creation, the many stories, whether they be allegory or not—they aren’t as important as the truth we live every day. Love. Love this earth, love each other, love yourself. I am teaching that to my children through terms that literally include God but more so through events that breathe him. We pray “Dear God” when we remember to say the words, but we live “Dear God” when we forget.

And with all the unanswered questions I have right now about faith and my mission to explore them simply by living and learning from others, I’ve never felt closer to God in my life. I am confident my children will know him too.

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I’ll end this with a story my dad once told me. A woman in a faraway country, who knew nothing of religion or God, had a son who grew very ill. Desperate to save him, she tried everything—village witch doctors, potions, medicine—until finally, she threw her hands into the sky and prayed to a higher being she knew nothing of. “Please,” she pleaded, “if you’re there, save my son and I will serve you my entire life.” The woman’s son became well and, although she knew nothing of this higher being she prayed to and believed saved her son, she did things she knew to be good—things she thought to be of service. She was kind, she helped others, she tried to make good choices, she loved, she practiced selflessness. One day missionaries came to her village and taught the people about their God, how he loved them, how their lives could be changed if they gave their heart in service to him. The woman smiled and patted her heart. “Oh, I’ve been serving him for a long time,” she said. “I just didn’t know his name was God.”

Last night, we said a real “Dear God” prayer before bed. I started with “Thank you for—,” and Lainey filled in the rest. Food, her mommy and daddy, her siblings, her friends, her puppy blanket, hair ties, pink crayons, Dora shampoo. And then we prayed for those who are hurting, for those in need. “Let them feel love,” I said, “and let us find ways to give love.” We talked about what it means to feel and give love. “Like when you color a picture for someone?” Lainey asked.

Yes, that.

Sometimes we make things so much more complex than they need to be.