What Gia is saying

Meet Gia and her sidekick, apraxia…

I have never posted a video of Gia talking.

Don’t get me wrong…I wanted to.

When I first got my blog up and running, I decided I would make progress videos of Gia. According to my plan, it would go flawlessly and Gia would really enjoy doing it. I would make one every three months, post it to my blog, and maybe even lay in bed on a Friday night and obsessively compare them to one another. It was gonna be so fun. The only bump in my road would be my husband laying next to me, rolling his eyes.

Gia decided otherwise. She hated that camera. The second it went up, she shut down. I didn’t understand – she was supposed to enjoy it. What was I going to do on my Friday nights?

So I had to concede that Gia didn’t give a crap about my plan and neither did apraxia.

For Gia, that camera represented some kind of pressure to perform. I could see that it made her uncomfortable. She knew she had a difficult time getting her words out, and she seemed to know what I was looking for. This combination caused her great anxiety, and she’d simply revert to silence.

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So I put that Camera down.

That was then and this is now. Gia has blossomed and found confidence in her words. She finally feels understood. And though she’s still a bit shy when the camera goes up, she embraces it.

I don’t take progress videos – I take Gia videos, and I’m sharing one with you today.

I’m sure many of you understood most, if not all of what she said. This is a milestone that every apraxia parent dreams of, and I’m grateful for it. But don’t let this video fool you.

As an outsider looking in, you may see a normal little girl with a speech delay – a little girl who’s a little behind. But lying underneath is a severe and complicated speech disorder. Beneath the surface is a daily fight for a daily function.

If you had to describe apraxia in two words, it would be – ‘unpredictable inconsistency’.

Now bare with me while I break this video down in therapy terms…

Question: “Gia, how old are you?”

Answer: “Four”

You’ll notice her initial answer is “bour”.

The /f/ sound has been particularly difficult for Gia. She has always replaced it with a /p/ or /b/ sound. It all depends on the word. Is the /f/ sound at the beginning or the end of the word? What sound comes after the /f/? What sound comes before the /f/? Where in the sentence is the word that has the /f/?

Am I giving you a headache?

It doesn’t make sense. There’s no rhyme or reason to any of it. This my friends…is apraxia, and this is why it’s so difficult to treat.

When she first began working on the /f/, her therapist would have to say, “bite sound”, and Gia would bite her top teeth down on her bottom lip, while using the Speech-EZ hand cue, and watching her therapist do it all at the same time. In other words – she had to hear it, see it and feel it (multi-sensory method), in order to correctly produce the sound. This is considered a ‘full prompting’.

As you saw in the video, Gia’s /f/ has graduated to ‘minimal prompting’ (this took months). All I had to do was remind her little brain about that sound it tends to forget, and she corrected herself without even looking my way.

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Question: “When is your birthday?”

Answer: “June 9th”

Let’s start with “June”.

The /j/ sound is one of the most difficult for Gia, and although it wasn’t articulated perfectly, she actually produced it pretty well here. But when she says her own name, which is also a /j/ sound, she requires ‘full prompting’ to produce it correctly. It’s been a year and a half and she still uses the short /g/ sound to say her name.

Again, it all depends on the word.

Moving on to, “9th”.

Did you notice she made an /f/ sound to replace the /th/? But just before that she needed to be prompted to use her /f/. Fascinating, right? That’s apraxia. You never know what sound will drop, when and why.

Question: “What do you want for your birthday?”

Answer: “Spider-Man, Power Rangers, Spider-Man, Hat Elsa, Backpack Elsa”

So Gia.

Starting with, “Hat Elsa, Backpack Elsa”.

This is a sequencing issue, and can be quite common in apraxic children. Sentences may get jumbled up and words may come out in the incorrect order. When she does this I simply repeat back what she said, but in the correct order (modeling).

Since taking this video just a few weeks ago, Gia has started consistently saying, “Elsa hat, backpack Elsa”. So her brain has corrected one but not the other. Why? Don’t know! Ask apraxia!

Lastly, “Spider-Man, Power Rangers, Spider-Man”

Notice Gia drops her /s/ sound in ‘Spider-Man’ (both of them), and goes straight to the /p/. But she uses her /s/ successfully in ‘Power Rangers’ and ‘Elsa’. Well hello there, apraxia!

It’s not the /s/ sound that is difficult for Gia, but the /sp/ sound. This is called a ‘consonant blend’, and takes a lot of motor planning – too much for many apraxia kids. So in this example, Gia’s fallback is to drop a sound that she has otherwise mastered, the /s/.

In the middle of Gia listing off her birthday wishes I asked, “What kind of Spider-Man?”. She sort of glossed over my question and continued on with her requests. She does this regularly.

If her brain is already busy planning, sequencing and coordinating the thoughts she’s trying to express, me jumping in and asking her to plan, sequence and coordinate another thought is pretty much not an option. Not yet.

If you watch the video back, notice the effort that goes into each word. They don’t flow from her mouth. You can see her concentrating. She has to think hard about what she says and how she says it. Her speech is slow and deliberate. Her answers are short and to the point. She doesn’t go in to great detail – she knows she’d lose success if she did.

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To sum up…

I’m glad you got to meet Gia – the little girl who’s changed me in so many ways, who’s taught me so many lessons.

But if you’ve met one child with apraxia…you’ve met one child with apraxia. It’s a spectrum, much like autism. The severity that some of these children and their parents face is heart wrenching. There are some that will never be verbal communicators.

This video gave me an opportunity to describe just a few of the classic characteristics of apraxia. But in reality, this is really just a glimpse.

In order to give people a truly accurate look in to Gia’s speech, I would have to follow her around all day with the camera. You’d hear words fall apart the longer she spoke. You’d listen to mumbling and gibberish when she just can’t find the words. You’d see heightened frustrations and find a sea of ‘unpredictable inconsistencies’.

But the reality of apraxia wouldn’t quite kick in, until you watched Gia talking to a “typical” two or three year old – speaking in sentences…so effortlessly.

I’m not gonna lie, It’s a painful reminder of what it was supposed to be, and a difficult truth to face.

But this is Gia.

This is what she’s saying.

This IS what it was supposed to be.

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5 thoughts on “What Gia is saying

  1. My son has made such improvement this year but that I have honestly began questioning his diagnosis. He went from not talking at all to a huge vocabulary, but is still super difficult to understand, he just doesn’t sound ‘right’. I read your blog and this TOTALLY describes my son. Listening to the video, yep sounds like him, too. Maybe this mama was hoping the doctor was wrong. But then I see him talking with his friends or when he gets excited, and I deny it. Thanks for sharing. Glad to know my son isnt alone.

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    • There was a very short moment in time that I questioned Gia’s diagnosis as well. Although, I’m not really sure why. It was probably just part of my process. It sounds as if your son, like Gia, could technically be categorized as more “moderate”, and that might be what you’re seeing unfold. Of course this is a positive thing, but I agree it can leave you a little confused. I think the most important thing to remember, is that their vocabulary and their speech are two totally separate things. But because of how intertwined they are, they can easily be confused. Good luck to you and your little man!

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  2. She is so precious Sheila! 🙂 She sounds really good! Jake was never really a fan of the video either or he’d just act silly the whole time or fidget around. When he was 3, I got one of him speaking while spinning around on his belly on the kitchen table in pajamas and at the time I had to just take what I could get even he looked undisciplined and out of control! I am so glad I did videos though because it is amazing to see how they progress and it’s a really emotional thing to go back and watch a few years later. I love your description – unpredictable inconsistency – and how you explained how so much lingers beneath the surface with these kids. So true! Regarding what the other mom said about wondering if the apraxia diagnosis was accurate or not, I briefly went through this in the beginning also, but I think the biggest sign was his inconsistent errors. I remember doing a video for the CASANA research registry and they wanted him to say words several times in a row. Jake said all of the words different each time, which proved his inconsistent errors, and showed me that even though he MIGHT say the word right by itself, his brain was still scrambling the message. You’ve got an ear for the errors – that’s talent! Maybe you should go to SLP school after this! 🙂 Have a good weekend–

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    • Thanks Tori! You are exactly right, if there was just one single symptom that summed up every child with apraxia, it would be inconsistent errors. It’s really what makes apraxia what it is. I think having kids do what Jake did, and say a word 3 times in a row, is the ultimate test. There was a time I kind of spontaneously had Gia do this. She has an Uncle she calls, “Uncle Bob”, and about 9 months ago at his house, I had her say, “Uncle Bob” 3 times in a row. Here’s how each one came out – “Uncle Bot”, “Untle Bop” and “Umple Bob”. It was crazy, and that moment gave me such clarity. I felt like I finally understood what I was really looking at, and the magnitude of it all. I think it takes time for a lot of apraxia parents to truly understand what they’re dealing with, and some maybe never totally understand it. I can’t say I blame them. It’s all so complicated :/.

      A couple of Gia’s therapists suggested I become an SLP someday! Haha! We’ll have to see about that one 😉

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