When My Daughter Couldn’t Find The Words She Needed

Muffled giggles and shouts for dada from behind my daughter’s closed door signal the end of nap time. I dump the load of laundry I just got out of the dryer on my unmade bed to head into her room. I started this day two steps behind, and I haven’t managed to catch up. I push that thought to the side and open the door wide while singing, “good afternoon Everly!”

And then I notice that she is proudly standing in her crib in her birthday suit. Clean diaper thrown to the other side of the room, she did not stay clean and dry during nap. I fluctuate between pride at the life skill she’s mastered; she was wearing a one piece jumper and a diaper with snaps, and annoyance at the mess I now have to clean. I opt for something in between and mutter out “how’d you manage to undo those snaps?” through clenched teeth while I carry her into the bathroom to rinse her off.

Clean and fully dressed once again, I set her down with a kiss to play while I clean up. She is gesturing to me and yelling, but it isn’t sign language and none of the yelling contains actual words. Her frustration mounts as I ask her questions over my shoulder as I work, playing fifty questions to figure out what she needs. I show her picture cards, I use signs. I finish putting her bedding in the washer, and scoop her up to head downstairs to continue the guessing. I show her the fridge and ask if she wants a snack and hear an articulated no from her. I pull out the milk and she pushes it away. I frantically sign and ask all the usual activities and toys. Books, blocks, music, babies, and coloring are all rejected. Her frustration grows into a full on tantrum. I pick her back up to try to soothe her. Why can’t it be easy for her? For me? This struggle with language and communication has never been more hindering. As I’m crying and turning on music and gently swaying she calms down a bit and carefully takes my face in her two tiny hands and looks desperately into my eyes. I search them, trying to understand. Her baby sister wakes up as my frustrated girl struggles out of my arms.

I go upstairs and pick up my youngest and hear banging downstairs. As I rush into the room, there is Everly, standing by the back door banging on it and pointing. Her big sister is playing in the sandbox and comes over to the door.

“Do you want to play outside?” I ask. Everly nods and signs play and outside. Two signs she knows and uses often. Was this the request that caused our lack of communication? Did she give up on what she was trying to say and resign herself to doing something else? Did she sense my annoyance while cleaning up, throwing off her confidence and ability to communicate her wishes?

Sun hat on, I opened the door for her to join her sister. She happily toddled off into the yard, getting a boost from her big sister into the sandbox. I sat on the patio nursing my youngest, watching my two oldest play, running our failed attempts at communicating through my head.

Am I doing enough speech interventions at home? Should I add more days, or find new communication apps on my phone for practice? Should I have stepped away and not played fifty questions trying to figure it out? Would she have found her words faster if I had stopped cleaning her bed and fully focused on her?

I walk over and put their baby sister in the sandbox with them. Through the squeals and the hugs Everly says, “baby” while manipulating her baby sister’s hands into the correlating sign. Next, “paaaaayyy” she says, while moving her sisters hands to show her. They clap together, and my oldest comes over to join.

I take a step back and focus on the joy contained in that box filled with sand. They play together and I push down the mom guilt that had been creeping to the surface. I am enough.

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World Down Syndrome Day

Sometimes the best advocates come in the smallest packages. They write from the heart, and want to share with their friends. There is no hesitation, no second guessing the syntax, or the message; only words from the heart. Words shared with her kindergarten class, pictures shared, and Down Syndrome normalized to twenty 5 and 6 year olds; Everly is a person, a sister, a friend. Kaylee Dee makes me proud in so many ways, and her love for her little sisters is just one of them. I just found this in the folder I’ve kept to save in Kaylee Dee’s School Memories book. Written on the back of her morning work on March 21.

WDSD 2017

“It’s World Down Syndrome Day. Horray for Everly. World Down Syndrome Day is to celebrate people with Down Syndrome.” Finley, Everly, me(Kaylee Dee) and Mom.

Information/coloring page, speech, and picture Kaylee Dee shared with her class.

Turtle

Today my girl said “turtle.” She said it without me prompting, or trying to get her to repeat the sounds as I articulated the word for her.

As I looked through her folder from preschool, she pulled out her hand over hand drawing and held it up to me and said, “turtle!”

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I cried. I cried because she so rarely uses her words, preferring to gesture and say just beginning letters instead of full words. Words like “nonverbal” come up in connection with Down syndrome, and I’m often worried they will apply to this girl. So I’ll take each word she does say. I’ll celebrate the small things. I’ll take them as signs that she may speak one day. That she’ll talk our ears off, and come home with notes declaring she “talks too much in class.” So for now, turtle will do. I’ll take it, along with her huge smile that lit up the room as she helped hang it on the fridge, once again saying, “turtle.”

America the Beautiful

Our calendar is filled this weekend. Independence Day in a military town means celebrations at every turn. It means huge fireworks displays and red, white, and blue adorning each home. It means if you want the patriotic decor and accessories from the Target Hot Spot you better act fast. We are armed with light up American flags, glow bracelets, patriotic necklaces and matching outfits. We’ve got our ear muffs to protect little ears, sunscreen, and plenty of water. Here, we celebrate the land of the free, alongside the brave.

As we prepare to spend our weekend celebrating at races, beaches, cook outs, and fireworks shows I can’t help but pause to be thankful to live in a country that allows all of my children access to the freedoms in our condition. I don’t have to look too far back in the history books to see a time when children born with Down syndrome, like my daughter, and other disabilities were not afforded these rights. I celebrate this day not only for my country, but for my sweet girl who has the right to pursue happiness right along with her typical sisters. She will attend school, and continue to college if she pleases. She can have a job she loves and marry if she wishes. Freedoms that I have to remind myself not to take for granted, especially for her.

Our system isn’t perfect, but this weekend we let freedom ring. We are thankful to live in a country where Down syndrome doesn’t limit her life. And we are thankful to spend the weekend with our hero.

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Happy Father’s Day to the amazing man I call my husband. Thank you for being their world. Your love for our girls makes me heart melt each day.

Motherhood. The most exciting journey of my life. The days are long, the nights are far too short, but the joy can be found in each day. Each excited story, every tear stained cheek in need of a kiss. All the frustrated tantrums, the sassiness followed by hugs. Watching them learn and grow, filling their days with equal parts play and structure. Helping them create bonds with each other, and learning to play together. These moments fill my heart and feed my soul. I love the little people my girls are becoming.

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When Socks Took On A New Meaning

World Down syndrome Day is celebrated annually on March 21, or 3/21, to represent the three copies of the 21st chromosome that people with DS are rockin. It is a call for awareness, and more importantly, acceptance. We wear funky, mismatched socks to start a conversation.

The first World Down Syndrome Day we participated in was when Everly was just 4 months old. She was my snuggly, sweet newborn. We “rocked our socks” and I shared our story on social media.

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I read  47 Strings: Tessa’s Special Code, by Becky Carey to my first grade class and shared what it meant to have Down syndrome. They had lots of questions. They had watched my belly grow and saw pictures of her as a tiny newborn while I was on maternity leave. They were invested in our story and accepting people with differences. I received emails from parents that afternoon about the story of a little girl named Tessa their child listened to, and how Everly had something called Down syndrome, and she is more alike than different. I sprinkled a bit of awareness onto 18 six year olds that day, who shared it with their friends and family. I cried happy tears reading those emails and hearing them on the playground with friends from other classes. This was why WDSD was important.

Wearing funky socks is about more than a silly outfit. It’s about starting conversations. It’s about spreading hope and acceptance to new generations. It’s about Everly and her homies with extra chromies. We’re investing in their future and shaping their present with love.

This is our third year participating in World Down Syndrome Day. Everly is now a spunky 2 year old with loads of determination and sass. This year we will be rocking our socks and posting our pictures with #MyFriendsMyCommunity to join the movement. Please join us in this conversation; our children depend on it.

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