Tuesday, May 14, 2013

apraxia awareness day

It's today, apparently.  I saw some posts about it and felt an urge to briefly recap our story, especially since its adoption twist is unique.  It's good to look back and see how far we've come.

We adopted Shu from China in May 2011.  He was 13 months old.

At 17 months old, he said something resembling "peekaboo"...and then never said it again.  We had been trying, almost from the beginning, to teach him some sign language, starting with "more."  It took six months.  (Later we realized this was evidence of a motor plan problem, which affected other fine and gross motor skills, not just speech.)  We never bothered with any other signs.  Shu had been receiving physical therapy, and at this point it became clear he also needed help with speech.  Our wonderful SLP suggested he might have apraxia.  He was very young, but had all the classic earmarks of apraxia.

At 21 months old he made these sounds:
Uh for up
Duh for up (yes, I know that makes no sense)
Oh (distorted vowel) for open
Dow (distorted vowel) for down
Mmmm for more or milk.  He could not add any vowel to this M consonant.
B, occasionally, but more often came out as V or Duh.

No mama, dada, hi, bye...or almost any other typical word you'd expect from a 21 month old.

He was in twice-weekly speech therapy by this point.

At 25 months we had these kinds of struggles, also very "classic apraxia":
Water (if I tried to get him to say both syllables, instead of Wah) came out Doh-Wah.
Trying to get him to put the N on "down" resulted in weeks of him saying Dah-Doh, and then Dope-Duh.  He said Dope-Duh for the next two weeks.
Could  not make OO, EE, or AY sounds at all.

By 27 months, he had made great progress.  The SLP assessed his expressive language in the 15-18 month range.

Shu turned three recently, and still has speech therapy once a week.  The school district assessed his speech at the bottom end of "normal," (wow!) so although he will be attending their preschool in the fall with an IEP, he will not be receiving speech services.  Some of the apraxia descriptors listed on the ASHA.org website fit Shu perfectly, particularly the anxiety and trouble with word order and recall:
  • Makes inconsistent sound errors that are not the result of immaturity
  • Can understand language much better than he or she can talk
  • Imitated speech is more clear than spontaneous speech
  • May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
  • Has more difficulty saying longer words or phrases clearly than shorter ones
  • Appears to have more difficulty when he or she is anxious
  • Is hard to understand, especially for an unfamiliar listener
  • Sounds choppy, monotonous, or stresses the wrong syllable or word
  • Other expressive language problems like word order confusions and word recall
I'll be interested to see how he progresses in a daily school setting with his peers.

That's our apraxia journey, to date, in a nutshell.  What would be difficult no matter what has been infinitely more challenging because of adoption and attachment.  The catch-22 is that helping Shu to communicate has both hindered and bolstered our relationship.  Having a conversation with him is now one of my favorite things, maybe because we've had to fight so hard to be able to do so.  

I'm proud of the way he hasn't given up, even though I know he wanted to.  I'm proud of myself for the same reason.  


Rita Buettner said...

What a journey you have been on with your little boy. Thank you for sharing it with us.

bbmomof2boys said...


As you know Tiana also has apraxia. It is affecting her reading now because she has a hard time making the sounds. I strongly urge you to push to keep his speech therapy during preschool. He may lose everything he's learned which is also a sign of apraxia. I've had to push our school SLP to up Tiana's therapy to 3x a week - and I mean push her hard for this. Tiana is 7 now and if you aren't around her then you probably won't understand what she is saying....


Krissy said...

im not sure how they got "normal" for speech... wow! glad he qualified for sped preschool. and they usually have "group" speech therapy there anyway.

see if you can take your fabulous slp with you to a meeting - she is a good voice for what she sees weekly.

hugs friend!

Amy said...

Jerusha, I'm so proud of you & Shu!! You all have come so far. I know how worried you've been. To be able to come out from behind some of those black & gray clouds & see the sun beams shining down on Shu.... it's such a blessing!! I know you have some more storms to weather, but you know that you can do it!! You will help each other on this journey & be so much stronger for it!! You were meant to be this special angel's mama- He needed your strength & patience (even when you didn't feel like you had either of those to give!). You go Mama! & Go Shu!! :)

TeamOehlkers said...

Your journey has been so very difficult... (((hugs)))... but being on the outside looking in through your blog window ~ your unwavering faith has been beautiful and inspiring. Praying that you always feel the peace and grace of God in your family.

Paige said...

I find this interesting and will have to watch Silas closely. I see some signs of this and yet don't know if he just needs more time..., it is taking so much longer for him than it did with the girls. He talks at about a two year old level. He will be in speech in the Fall. We will see what they say.