Jake's Journey with Apraxia

And the Friends We Met Along the Way

by Amber, Contributing Writer

In my last post, I announced that Cason, my oldest with apraxia, had been dismissed from speech and is considered resolved. That same day I learned that Callen, my three-year-old with apraxia, was more than likely misdiagnosed. We walked into speech with two apraxia diagnoses and walked out with none.

Callen’s new therapists have suggested that he has low oral tone and not apraxia. There were many similarities between my boys up until a few months ago, which made it easy to accept and not question that they had the same diagnosis.

Low Tone vs. Apraxia

Callen can’t pucker, blow bubbles, move tongue certain ways on command, touch the top of his mouth with tongue, etc. And in the beginning, the speech errors he was making were consistent with apraxia. When given the Kaufman Praxis Test he scored as apraxic because he scored low in those areas and there was also a huge gap in expressive and receptive language.

Recently, I questioned that Callen’s speech progressed from November until January, even though he wasn’t in therapy. That just isn’t heard of with apraxia. The few times Cason missed a couple of weeks of intense apraxia therapy, he regressed. Callen was missing months of it, but was still improving on his own.

Also, the speech errors Callen has now are consistent. Whereas with apraxia, the errors tend to be more inconsistent. For example, when he makes an error with a word, he makes the same error every single time. But with apraxia, the error can change each time the same word is said.

Callen’s case is truly a case of being diagnosed too young. Many therapists will tell you they don’t like to diagnose apraxia before three years old because of this very reason. But at the time, everyone felt confident it was the right diagnosis. I felt confident in it… until he started making progress without therapy.

When he was diagnosed with apraxia a year ago at the age of two, the actual diagnosis probably should have been low oral tone, severe expressive delay, phonological disorder, articulation disorder.

plan aCallen Today

In January, Callen was given several evaluations. His results showed him within normal limits for his age for expressive language, receptive language, oral language, and auditory comprehension. His articulation is below normal range, which is why he’s hard to understand.

On the Kaufman Praxis Test, he scored low for oral motor (caused by the low tone not apraxia) and within normal limits for everything else.

Callen has low tone only in his mouth, whereas my older son has low tone in his body. Low tone isn’t about strength, it’s about how the muscles are when in a relaxed state and how much energy it takes to move them. It’s still neurologically based, as is apraxia. Our therapist said to think of a runner or a body builder. They can’t just go out and do those things without having a good core. Callen doesn’t have a good core in his mouth, and speech was hard to develop and slow to develop.

In Callen’s case, his jaw and tongue move as one. This shows up when he is eating. I didn’t realize it until it was mentioned. He always chews with his mouth open, and moves his food around in an odd manner when chewing.

Also, Callen sounds very robotic and staccato when he speaks. The SLP said Callen isn’t getting a good breath, so he’s likely taking quick breaths or trying to hold his breath between words in order to make it last longer to make longer sentences.

TalkTools for Low Tone

Callen’s therapist is going to be using a program called TalkTools to train his mouth/jaw/tongue muscles. We are familiar with TalkTools from Cason using the program with feeding therapy to learn to chew and move his tongue.

straw

We have been using the TalkTools horn and straw protocols for four weeks. We do the exercises every day. I have already seen improvements. In the beginning, Callen would try to use his teeth to stabilize the straw in his mouth when drinking. Now, he uses his lips most of the time. He also could only blow on the horn three times and get a good sound. Now, he can blow 20 times in a row and get a good sound. He’s able to sustain his breath longer. I’ve noticed his speech becoming more fluid because of this.

horn kit, talktools

Callen’s SLP is also working on articulation in regards to speech development.

Right Where We Belong

I’m a firm believer that God always has a plan. As nervous as we were to leave San Diego and our wonderful therapists, it turns out Charleston is the place to be for Callen. The speech center we are going to has therapists actually trained by the creator of the TalkTools protocols. She is from Charleston and has visited the center. While San Diego was the right place to be for Cason’s speech, I have full confidence that Callen is going to flourish in Charleston getting the exact therapy HE needs.

Bio: Amber lives in South Carolina with her husband and four children. She has two sons diagnosed with apraxia of speech and sensory processing disorder. Her older son also has hypotonia. She is a stay at home, homeschooling mom who taught public school for eight years. In her free time, she likes to read and sew.

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One thought on “A Change in Plans … When Apraxia Is Misdiagnosed

  1. Good information. My two year old grandson is slow in talking, sounds similar to your experience. I wonder if holding food in his mouth, especially that which needs to be chewed, is related. Thanks for sharing this. ~Joyce

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