When you can talk but have no words

By Laura Smith|January 8, 2017|Apraxia, apraxia blog, Childhood Apraxia of Speech, special needs, special needs parenting|

If you are familiar at all with apraxia of speech, then this meme makes perfect sense to you. Most kids with apraxia, especially in the early stages cannot communicate what they are thinking because they cannot talk or make the sounds make sense.

(Not) fun fact: Some kids (I don’t know the percentage offhand), will also have an additional language processing disorder with the apraxia.  This adds another layer of complexity and makes it more difficult for kids to express themselves with language even if they can actually articulate all the sounds correctly.

Such is the case with Ashlynn.   Now, to be clear, Ashlynn can  talk my ear off.  She talks so much sometimes I have to tell her to stop talking, like when she has food in her mouth or when we are brushing her teeth!  She speaks in sentences, has long sentences, has question forms, and is gaining new vocabulary words daily.

The other day, she comes home with this paper:

Seems normal, except, the only thing correct is her name.  She has never declared a favorite color, she doesn’t eat meatballs, and I’ve never heard of this alleged “favorite book.”

“Ashlynn,” I asked.  “Why did you say your favorite food was meatballs?”

“Ugh my brain!” she said as she slapped her forehead.

“Honey, why would you say meatballs though?”

She points to a cookie tupperware sitting on the counter.  Over break we had made Christmas cookies called Pecan Drops that are round little balls.  She says, “What are those called?”

“Pecan drops?” I offer.

“Yes! Pecan Drops!  Ugh my brain!” she exclaims.  Sigh.  Poor thing.  Can you imagine?  What must that be like?  She knew EXACTLY what she wanted to say, but couldn’t access the word pecan drop and settled on meatball instead.  Someone even wrote it down for her and she just had to go along with it.  This is what always amazes me about Ashlynn.  She like NEVER gets frustrated.  How is that?  Wouldn’t that be frustrating?  She was just happy she could spit out a word and complete the activity.  She didn’t care they didn’t know she was trying to say pecan drops.

I look down the list.  What book is this?  We’ve never read this book?  Is this really your favorite book?

“No,” she laughed.

I looked at my husband and told him maybe one day one of these about me papers will be accurate.

Later that day, I saw a fun game on facebook where parents were asking their kids to answer questions they asked them.  It was to show how much your kids pay attention and really know you.  Questions were things like, what is my favorite food, what makes me happy, etc.

I asked my four year old and he was funny.  I told my husband to do it with Ashlynn and handed him the questions.  This girl who talks with her mouth full and while she brushes her teeth was reduced to a pantomiming nervous wreck.  I could have cried watching it.  She knows all those answers.  She pays more attention to us than anyone.  She will be the first one to notice a haircut, a new shirt, or change in the decor.

My husband asks the first question:

“What is something I say a lot?”

I KNEW she would get this one.  She tells me what he says all the time.  She tells me “Daddy says he loves me forever.”

She stood there and looked visibly anxious shuffling her feet from side to side.  We gave her processing time, we didn’t rush her, we were patient, we both asked again phrasing it differently, still nothing.

“Ask the next one,” I said sure it would be easier.

“What is something that makes me happy?” Cody questioned. I knew she would have this easy.  She waited a time and then just pointed at herself.  She didn’t even say her name.  It’s true she makes Cody happy, but I couldn’t believe she wasn’t saying the jetski, or his snowboard, or his video games.  Hmm.

“What makes me sad?” Cody asked as the next question.  She pointed to herself again.  My husband gave a half smile.  “You don’t make me sad Ashlynn,” he said as I sat there feeling that exact feeling.  Sad.  This was so sad.  Where were her words?  When I say and write about crippling word finding, this is what I’m talking about.

He skipped down.  Ashlynn has been to his work now twice with him for take your kid to work day.  She knows he works on computers.  He asked her if she knew what his job was.  She sat there and started shuffling her feet again.

He asked the last question, “How much do you love me?” and she put her arms out wide, again with no words. 🙁 🙁 🙁

Sometimes it’s such a cruel, cruel, cruel disorder.

Seriously.

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