a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Friday, April 8, 2011

Apraxia

Apraxia: another word I'd rather not have to add to my vocabulary but it seems as though I have no choice. This is something Oia deals with on a daily basis. Turning thoughts from within her head into words that exit her mouth is harder for Oia than any physical challenge she endures. I hate it for her.

It has been about a month now since Oia began taking private speech therapy sessions. (She also receives speech once a week at preschool.) Yesterday was another private session and the word Apraxia was bounced around in our conversation more than once. I guess hearing the word slowed me down a bit because never before had this been a topic of discussion with any other of Oia's speech therapists but then again, I'd say that doesn't shock me given the caliber of speech therapists we've worked with in the past. Anyways, I digress...

Don't get me wrong, I know Oia has many things that interfere with her language development but I've never let myself put a name to "those things". Ignorance is bliss, maybe? We've just made sure to keep Oia in ST and submerge her in a language rich environment which means I provide a day-long commentary for everything we do together.

As best as I understand, Apraxia is a disorder of motor planning. Asking a kiddo with Apraxia to speak a word on command feels to them like a nearly impossible task. They have to process the word and "plan" all the thoughts and movements necessary to say the word but the planning part is interrupted; in Oia's case by that little hole so conveniently located in the language dominant, left hemisphere of her brain. Words that come spontaneously are easiest because they come without thought and without "planning". Often times these are words of frustration or extreme excitement. This explains why Oia has been known to speak something completely new and clear only to never be heard saying it again.

This motor planning disorder explains Oia's limited and repetitive use of words. For example, one of the only ways she knows to engage herself in conversation is to ask "What's that?" even when she knows full and well what the object is. It's easier for her to speak what she has mastered than to battle new words or phrases due to her challenges in motor planning.

This disorder also explains why Oia has (hopefully temporarily) lost the ability to speak her name. As one of her goals in ST, she must learn to speak in isolation all long vowel sounds: a, e /ee/, i, o, u /oo/. Even though she's been able to pronounce her name for over a year now, she could not just say /ee/. Now that we've worked so hard with her to say the long e sound in isolation, we have also "messed up" her motor plan and ability to speak "Oia /E-ah/". Another example: Oia can speak "uh-oh" but can't produce just /oh/ which is the long o sound. It's crazy and hard to understand yet this is what I'm told Apraxia can do.

I don't understand it all which is why I welcome those of you who have experience with Apraxia kiddos to share your 2 cents. What works, what doesn't, any thoughts or suggestions? I have a little girl who wants to be understood but no more than I want to understand her.



And for the record, she is currently using picture cards to help facilitate communication and she uses a handful of signs to indicate things of need; drink, eat, sleep, etc. We also have experience with the iPad. At this time though, she'd prefer to use the iPad for play instead of as an augmentative device.

3 comments:

  1. Our nanny found your blog and passed it on to me. I have a daughter who is now 5 who was diagnosed with severe Apraxia when she was three. I have traveled a little further down the road that you are just now embarking and would be happy to share what we've learned along the way. It is CRITICAL that you find an SLP that is trained and experienced in treating Apraxia. Without this special training, and frequent therapy, it is really hard for kids to make progress. I'm sure you've googled Apraxia and found some resources but one of the best is at www.apraxia-kids.org. Kathy Bauer with CASANA has dedicated her life to helping kids with Apraxia and increasing the training opportunities for SLP's. Kathy has two grown children that have apraxia. You can contact me at b_a_farris at yahoo dot com.

    Know that you are not alone in this journey. There are therapy techniques that are successful. And Oia will someday have a lot of words to tell.
    Brandy
    Arizona

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  2. I don't know anything about apraxia but your digression about ST made me laugh. Its amazing how far we have come with the research and treatment for so many developmental delays. It sounds like it will be a long road but obviously one that is worth traveling!!

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  3. My son is 5 and has been receiving therapy for his expressive communication delays since he was 2, but it was not until we finally found the right therapist last year that lead to his diagnosis of Apraxia. We live in Charlottesville, and his therapist is in Staunton. Before we found our current SLP, we had went through a handfull of other therapists, but they were always puzzled by his lack of progress. Since beginning therapy with our new SLP, Caden's speech has improved by leaps and bounds. My point in this ramble is that it is SO important to have a SLP who is proficient in the specific therapies used to help children with Apraxia. Normal therapies used for typical articulation disorders are not going to help. It sounds like you have a good therapist if she/he was familiar enough with CAS to toss it out as a possible diagnosis. One day, after lots of hard work by your little Oia, she will be able to tell you things you never dreamed her little mind could make up! There was a time we wondered if our son would ever be able to speak, and less than a year later most people can understand most of what he says. One of the added benefits are the fits of frustration have ceased. Please feel free to email me if you have any questions, or are just looking for support from a family who has experience with CAS.

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