A peek into life with Maura – communication skills

19 Aug

It was Miriam, big sister extraordinaire, who stated this truth – “Maura doesn’t have a speech disorder. She has a communication disorder.”

Exactly.

There’s three main branches of speech disorders – articulation, phonological, and apraxia.

We all are aware of articulation disorders, where your R’s sound like L’s or you have a lisp. Both of my boys had articulation issues as small creatures. It was okay though, because Mom had the mother of all speech problems herself, her siblings all had minor articulation issues as well, and even though Collin tried to disguise it by just dropping all S’s when possible (because my oldest has always been the most aware kid ever, and knew he wasn’t saying S’s right, so just skipped them…yeah…) needless to say, I was the person signing her child up for kindergarten and asking about speech therapy.

Miriam had a phonological disorder – to put simply, it means that she left out or replaced letters in words. “Orange juice” became “oran ju”. “Waffle” was “wawa” (not to be confused with Wawa, the fabulous convenience store on the East Coast.) Even to my trained ear, she was intelligible maybe 75% of the time. However, once she began to read, it cleared up.

I myself can remember my speech problems. My S’s came out horrible, my R’s were lazy, I couldn’t pronounce S, SH, CH, J’s, Z’s, and soft G’s. When I asked my mom if I sounded like Miriam, she was all “Oh no, you were way worse.” But eventually I conquered it and retrained myself on how to pronounce all those words and my kids speech therapists would fawn over how well I speak now.

With Maura, I eyed her, wondering which speech issue she’d get, articulation or phonological? Well, being Maura, she decided to go a different route.

Apraxia. Childhood Apraxia of Speech. Which, in a way, was fitting, as she has all sorts of motor planning issues. So why not speech motor planning issues?

But she also has problems with communicating. Things get jumbled up. She doesn’t always get concepts. Even yes and no questions can be hard.

Like yesterday, she kept asking to have her hair tied up.

“Hey Maura, do you want your hair short or long?” I asked.

“Yes.” was the answer I got.

“Do you want your hair short like Miriam’s?” (Miriam is currently sporting a pixie cut and was sitting right there.)

“Yes.”

“Do you want your hair long like Mom’s?” (My hair is past my shoulders.)

“Yes.”

Well, that clears things up, doesn’t it?

Then last night, we had pizza (because when Mom’s been up since 4:30 am, pizza is sometimes what’s for dinner.) Maura had her favorite spicy chicken pizza. At one point though, she went “OH! MY EYES!” and had both hands on her eyes as she stumbled around the table. I laughed, thinking she was playing. But then, she started crying.

“My eyes! My eyes!”

She balled up her fists and pressed them into her eyes, but then she started crying harder, then screaming. I tried asking what was wrong with her eyes, but all I got back was more screaming and “My eyes!”

I think what happened was she got something spicy from the pizza onto her hands, and then rubbed her eyes, spreading hot pepper or whatever into her eyeballs. But then she kept rubbing her eyes, which made her cry more. So there I was, racing around, shouting for baby wipes, trying to rinse her eyes a little with a wet washcloth while simultaneously scrubbing her hands with baby wipes.

I didn’t know how to explain to her that she must have some spicy oil on her hands from her pizza, because she might only understand “Pizza makes your eyes hurt, pizza is bad.” She loves pizza. I don’t want to ruin it for her for life. So I just cleaned her hands well, wiped her eyes with a dripping washcloth, and soon her eyes were feeling better. I was glad that it all happened around me, that I hadn’t been in a different room when it happened because I’d then have to worry that maybe somehow, she got some sort of odd chemical in her eye (even though we try to keep all hazardous materials out of reach.)

But this is just part of our life with Maura. I joke that I go around sounding like Mr. Rogers, because I simplify my speech so much for Maura. I want to make sure I say words she understands. When I talk to her, I am always making certain I’m phrasing things in a way she gets. I will repeat myself with her constantly because she has problems processing stuff, so repeating things helps her get it all. And then, I give her time to process, and figure it out. “Give her ten seconds” I tell people.

Having been the child people couldn’t understand, I know that my daughter is working hard to communicate with us. I also know that she sometimes can’t. I can also state honestly that Maura is better at communicating her feelings than I am. Way better. Really, I should take some lessons from her on it.

That’s sort of the nature of things here though – for her to communicate, everyone around her needs to be on board. Luckily, we’re all invested in her communicating, maybe because we all went through a phase where no one could understand us either. Maura communicating better is a win for her, a win for us, a win for the family. Really, there is no losing here for anyone.

So if you meet us and I sound like I am interpreting for Maura or yourself – it’s because I am, so that someday, maybe she won’t need me to do that.

 

 

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: