Tag Archives: nonverbal

Wash Feet

I was giving Adelaide a bath, when she grabbed the washcloth from me. I assumed she was going to chew on it. She mouthes everything, especially cloth items. 

But she surprised me and ran it over her legs. Then she plunged it into the water, brought it up, and rubbed it over her legs again. One at a time. 

My eyes brimmed with tears, watching my girl scrub her own legs.

And then the tears actually fell as she put the washcloth on her feet and said, 

“WASH…………………….FEE……………T!”

And she scrubbed her own feet for about 15 seconds, before trying to put the washcloth in her mouth. 

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This Is My Happy Face

Smiles, laughter, hand-clapping, arm-flapping, head-thrashing, shouting, and booty-shaking. That’s how Adelaide says, “I’m happy!” 

   
     
 
  

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Five Minute Friday | Quiet

Ready, set, go…

“She seems so loud to be nonverbal.” What a friend said about Adelaide. “Yes, it just means she can’t actually communicate with us verbally. But they don’t have good words to describe these things.” Well, they do. But not ones I use with my friends and family. I also don’t use colpocephaly everyday. Or her six other brain abnormalities. But all the people who love Adelaide know about PMG. Polymicrogyria is in our dictionaries. And we use nonverbal. Even though it’s not entirely a great fit. She says some words. She signs some words. Adelaide is constantly counting up to 20 and back. And she recites letters in meaningless orders. She often sounds like a Spelling Bee contestant who forgot to practice. Adelaide makes a noise that sounds like “Ditididddittttttidit.” It has meaning for her. It means, “I’m very excited right now!” When she’s actually tired, or pretending to be tired, she makes a baby-seal-being-devoured-by-a-polar-bear cry. I get horrible looks when we are out and she makes that cry. She’s learned to use it when she’s done running an errand. Because we *must* leave. It is impossible to remain anywhere when she goes baby seal. The looks. Those people who keep Child Protection Services on speed dial start to twitch. On Wednesday, I picked up Adelaide from school and her paraprofessional asked if we spell her nickname at home. “Yes, to the tune of B-I-N-G-O.” “Well, she spelled her name today! I asked her how to spell her name, since we were going to write it in shaving cream, and she started spelling it. A-D-D-I-E!” It’s a milestone I had removed from our table. We don’t actually have a table…house is too small. It’s a milestone I had removed from our kitchen island. Our daughter spelled her name. Our nonverbal, but rarely quiet, four-year-old spelled her nickname.

A-D-D-I-E. A-D-D-I-E. A-D-D-I-E. And Addie is her name, O…

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Time’s up! Join me at katemotaung.com with your own five minutes of raw, unedited, milestone, or mundane writing.

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The Life Of Pie

“Pie.”

“Adelaide! You just said pie! Do you want pie?”

“Yeah.”

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“Pie. Wow. Eat.”

“Adelaide, do you want more pie?”

“Pie. Eat. Pie. Eat.”

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A conversation with my nonverbal daughter.

Best.Thanksgiving.Ever.

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Confused By Umbrellas

When I dropped Adelaide off for school, it started sprinkling. She was laughing at the raindrops. Then, Miss Susan came and put an umbrella over the wheelchair. Her face. “Where did the rain go?” I can see it in her eyes. I chuckled all the way home. And then I realized we don’t actually own an umbrella.

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Without A Camp

I will never forget sitting with our neurologist in one of a dozen identical rooms with that geometric wallpaper following a chair rail around the perimeter. All three campuses have that same paper and somehow incorporate it into remodels and new construction. The design looks like something from my childhood. Do they have a stockpile? Do they special order it? He asked about Adelaide’s new words since our last appointment. As we started listing off the new words and how they sound, his face stayed very compassionate. But I could see what he was thinking behind his eyes.

Twenty-something slurred attempts at words that may or may not even have meaning to her. In 6 months. “Mama, she does well for being nonverbal.” Nonverbal? Suckerpunch. But she counts and sometimes mimics and says “eat!” But I already knew she was nonverbal. I just wasn’t using the word. I had intentionally not even whispered the label.

It was like getting the wheelchair. An admission of something I was secretly hoping would change overnight. When we were wheelchair shopping, I actually said to Dave, “We don’t need to get something that grows with her. She’s only going to use this for a very short time. She’s not going to need it long-term.” And Dave gave me the same look. The ‘oh honey’ look. He put his arms around me and I just stayed there. Finally admitting what I knew was true. “She may never walk. And if she doesn’t, I should get a chair that can grow with her.” And I found a chair, since we had to pay out-of-pocket anyway, that could grow with her until she hits double digits.

And then even strangers asked, “Does it grow with her?” and my answer of “Yes, it does. We were blessed to find one.” rolls off my tongue, while my brain shouts, “CAN’T ANYONE ELSE BELIEVE WITH ME THAT SHE WON’T ALWAYS NEED IT!?!”

And we started learning sign language before Adelaide was called ‘nonverbal’…as I bought dvds and bought books and bought flashcards, I kept saying, “She’ll talk someday. We are learning sign language for a season. A short season.”

Then, I posted in a Facebook thread about Adelaide being nonverbal and someone responded that she wasn’t truly nonverbal, because she says some words. I deleted my comment and instantly felt like I was without a camp. My daughter doesn’t talk. She occasionally says things she hears. She sometimes lets me know what she needs. But she talks less than her baby sister does. She isn’t verbal. And she isn’t nonverbal to a community of women who will never hear “Mama.” And I have heard it.

And a message from a woman I had never met confirmed our outlier status. “Don’t say Adelaide is nonverbal. My son has never said one word. He has never said my name. He is truly nonverbal. I read your ‘blog’ and saw that Adelaide talks. You don’t belong here.” Her choice of punctuation around the word blog was the cherry on top.

We don’t belong anywhere. Adelaide uses a wheelchair, but can crawl. She is nonverbal, but says HI! She uses a bottle, but holds it herself. She can count by 10s to 100, but won’t stop trying to eat stuff out of her diaper.

For now, we are part of the sign language community. Even though Adelaide has minimal hearing loss. We invest daily in learning signs. Practicing our alphabet. Finger-spelling. Because we don’t know if Adelaide will always be nonverbal, but she is now. And has been for three years.

We have a substantial library of sign language resources, and have invested in new materials every tax return. And we also used tax return money to buy our long-term wheelchair. And that’s our season. Buying things we may need for one year or a lifetime.

And we are special needs wallflowers. Up against that outdated wallpaper. But still making it work. And ‘blogging’ about every awkward step.

adelaide in wheelchair

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