Wednesday, April 18, 2012

let's talk Apraxia, part 1

I mentioned a few posts ago that Shu has been diagnosed with suspected Apraxia of Speech, a "surprise special need." I've been wanting to write more about it both to document his progress and to inform others who might be on the same journey.

First, a basic explanation (I'm excerpting from the Apraxia-KIDS and the American Speech-Language-Hearing Association sites):   Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.  In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce.  Children use this information the next time they attempt the words and essentially are able to “learn from experience.”  Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic.  Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed.  Children with apraxia of speech have difficulty in this aspect of speech, as they cannot easily access these speech motor plans.   

What does this look like at our house?  For Shu, nothing about speaking has been "automatic" or "effortless."  He began physical therapy about eight months ago for significant gross motor delays, and caught up quickly.  As time went on, it became clear that something was amiss in his verbal communication, namely that there was almost zero expressive language--no mimicking, no "mama," no "dada," none of the typical sounds easily babbled by most infants (rather, all of his babbling sounds exactly the same:  "di-duh-duh-duh"), no attempting to make any of the sounds the rest of the family were making.  As physical therapy grew less necessary, speech therapy took priority, and I am thrilled and thankful that Shu now has an excellent speech therapist who is also a friend and a sister in Christ.  She did not waste time in recognizing the Apraxia, and sees him twice weekly; I know Shu will benefit greatly from starting appropriate therapy at his young age.  

Especially for those of you with personal knowledge of Apraxia or reason to be researching it, we began giving Shu ProEFA (fish oil) capsules in mid-February 2012, just one, to start.  We later increased his dose to two capsules. 

Here are the sounds Shu could make at that time (February 2012, age 21 months, home from China 8.5 months), most of them not spontaneous, but sounds he could produce when prompted:

As of 2/16/12
UH—uses for “up”
DUH—often mistakenly uses for “up.”  He would say UH (meaning "up") correctly twenty times in a row, but then twenty more times put a D in front of the word, with no awareness that he was saying it wrong.
OH (somewhat distorted)—uses for “open”
DOW (somewhat distorted)—uses for “down”
AH
MMM--says for "more" or "milk."  Unable to add any vowel sound after the M.
B—often comes out as V or DUH but if prompted a number of times, can eventually produce BUH sound.

A very limited vocabulary for an almost-two-year-old, with classic earmarks of Apraxia such as distortion of vowels, extreme and obvious groping to produce most sounds, and inability to consistently produce a sound correctly (see examples above).  We worked on some basic sign language from the very beginning and found that Shu was either unwilling or unable to sign.  After six months he did finally begin signing "more" and went on to learn a few other signs (or approximations), but we still found there were some he seemed incapable of doing even when we simplified the sign for him.  Apraxia is a motor planning disorder, so it certainly can affect other parts of the body, not just the mouth.  We gave up on that specific sign (water) and instead focused on helping him approximate the word verbally.  Because signing seems nearly as difficult as speaking for Shu, we have mostly let it fall by the wayside and have continued to concentrate on helping him build a core vocabulary.  He is making steady progress and has added a good number of sounds/words in the past two months.

To be continued...

9 comments:

bbmomof2boys said...

Yep - not an easy thing that's for sure. We tried the fish oil but it didn't help, at least not what we could see. We also tried NutriiVeda which a lot of people have had good luck with - again, not for us. Speech therapy, oral muscle therapy, patience,patience patience...that is what is helping. And prayer. I can understand her now 90% of the time, her kindergarten teachers 60% (maybe less). Be aware that this will also affect reading skills. Try sounding out words when you can't make the sounds - or better yet, you THINK you are making the right sounds...yeah - frustrating for sure. Her teachers want to hold her back this year - we've decided to push her to first and go from there. She's smart, has a memory you wouldn't believe but - well you know exactly what I'm saying. I've read that this could be life long - how I pray everyday it isn't.

Let me know if you want to try NutriiVeda - I have a few cases of the original formula.

Hugs,
Carla

Nancy said...

thank you SO much for posting this, Jerusha!
Reading...
Taking notes...
Hmmmmmm...
nancy

thewonderfulhappens said...

Wow, I am so glad that you are working with a great speech therapist. I know it will make all the difference.

Amy said...

I'm so happy that Shu is making progress! & How wonderful that you have such a wonderful speech therapist!! (Ours has unfortunately been proving not so great recently)
Blessings!!!

anything but LoKEY said...

This is good info. Can't wait to hear how he progresses. :)

Gena said...

Thanks for the update, Jerusha. I'm praying and believing that, by the power of Jesus, Shu will be miraculously and completely healed from this very real disorder. So glad you have a good speech therapist, too. God bless her! Praying for you and V--for peace and grace for the difficult processl. Grace to you, my sister!

TeamOehlkers said...

Thanks for the update on Shu ~ It is a blessing to have a diagnosis and a wonderful, competent speech therapist to help the little man and your family. I am praying for God to shower his grace and love on your family, and for Shu to continue to progress in his expressive communication.
(((hugs))),
chris

Johanna said...

I wish I could meet y'all one day, little Shu just seems like such an awesome special boy....what a gift! And, thank u for the insight into apraxia, I really learned so much! What a praise that you found such an awesome speech pathologist....that's 1/2 the battle! I dream about the day I can have long winded conversations with Tahlia....itll happen, these kids were created to "rise above"!!!

Michelle said...

Great post, Jerusha. For our little A, her only sounds when she came home were those made in her throat -- g and k mostly. It took a LONG time for her to find her lips and be able to produce a "b" or "p" sound, and even longer to find "n." After six months of therapy, she has gone from a 53% deficit to a 28% deficit in total communication. She probably says close to 50 words now, although she struggles to put the ending consonant on anything. So we ARE making progress, although there are days when it sure doesn't seem that way! Her therapist is fairly sure that she will continue to need services after her 3rd birthday this fall. The Lord is sure teaching us to be patient with slow progress.