My niece Vivi is one of Kekoa's best friends, other than his other cousin, Vivi's sister, Bella, of course!
When she started school after the Christmas holiday she was faced with a project to celebrate the feast of the Three Wise Kings who had come to visit the newborn baby Jesus. The project called for her to bestow a wish on someone else other than herself, just as the three wise men had done for the new baby Jesus.
And Vivi, the wonderful, loving little girl that she is, without any hesitation or any prompting said the following:
I will never forget this wish Vivi. I know that one day your wish will come true and Koa will be able to personally thank you with his words, himself. I love you so much my little Vieves!!
I know, I know... it HAS been a while! As other faithful followers of our other family blog has so politely put it "Wow, you must really be busy, since you haven't updated your blogs in MONTHS!" To put it as saying that we've been busy really, is putting it mildly. Yes, its been a whirlwind three months!
In the past three months we've learned a new thing that has come into play with Kekoa's overall praxis diagnosis. For months I've noticed that his whole oral sensitivity issue has not let up, in fact, I feel as if it either gotten worse at times or at best, stagnant. With my instincts telling me to push further, I contacted our service coordinator and set up an appointment with an Occupational Therapist to have Koa checked.
The session was quite helpful, not to mention interesting. To cut a really LONG story short, the OT concluded that it looked as if Koa had overall Sensory Processing Disorder. She noticed that in terms of anxiety, hesitation, not to mention inability to go with movement of his limbs, he was just overload with what his "capabilities" were. An example of this were, for instance, Koa lacked overall bilateral coordination. At his age, he should be able to do things like march his feet, bounce a ball alternating between his left and right hand, climb using his two sides intermittently. Koa unfortunately could not do either (which would also explain why to no avail and however many attempts we tried, Koa can't ride a tricycle either). However, the little bugger is indeed a really smart little cat. The OT noticed that with his shortcomings he had, little man would do all sorts of things to either compensate for his lack of bilateral movement or completely avoid the situation together. A great showing of this was when Koa tried to climb a padded wall. He pretty much ran and jumped as high as he could, hit the top and flopped like a fish until he got over it onto the other side. He was supposed to climb it; right leg, left leg and alternate his limbs to get him over. Not Koa! :) He did the task albeit, "incorrectly."
Now my instinct as a mother told me, "So my kid doesn't conform to the 'norms'... he's doing it right?" Well, I noticed that with each task Koa was real uncomfortable, to the point that it started to create a form of anxiety in the poor kid, not to mention it started to overstimulate him.
The thing to calm him- a beautiful golden retriever named "Blessed" used by the therapist to get children to partake in the different tasks. And Blessed worked like a charm. All the tasks that Koa needed to do that he initially had hesitancy in, he did just fine after following Blessed's lead.
Koa still has a road ahead of him, but its one that we're still strong to take.
Koa & Blessed 9/20/2011
Koa doing sensory work in the backyard with shaving cream (hence why we did it in the backyard!)9/28/2011
For some reasons unbeknownst to a lot of researchers, children with developmental delays, speech in particular, seem to have sensory issues... whether oral (Koa), touch/ texture (Koa), sound, environment (Koa), smell, they are a common thing.
When Koa first started his IE services almost one year ago, we found that Koa had some MAJOR sensory issues when it came to touching textures. For instance, he HATED paint and anything with that sort of sticky texture (i.e. stickers, glue). For him it was too much of an overload and you could see the anxiety start to build as he would frantically try to wipe whatever it is, off of himself. Quickly, though, and through repetitive usage of the different items, he got used to it... so much and so swiftly that within a month he tolerated the items. You could tell he wasn't into it, and it wasn't his first pick for an activity, but he would try.
Also, Koa's teacher was WONDERFUL in getting him acquainted with it. Together they made messes that would frighten any normal parent. Me, I was fine and knew it could be cleaned up, even in our new house. :) My whole drive was, if it would help him speak, then hey, I would try just about anything.
And sure enough, one year later, Koa's still doing sensory work and it elicits all kinds of new sounds and reactions out of him.
Today, Koa sat and not only painted, drew, colored, played with stickers... but he also attained to the task for a whole hour! Children with Apraxia, due to the lack of an understandable communication, which then leads to frustration, often have trouble attaining to a task for more than 10-15 minutes, TYPICALLY. Koa was again was showing that he's going to beat this thing, no matter how much it wears him out. :)
The first few pictures, you could see that Koa's a bit uncomfortable... it has been awhile since we worked with paint!
Then we got messier...
And it was a good event!
For a good measure, here are the words that we got out of Koa during this sensory time overload. 1. Kuh-lo (for "color) 2. Mowh (for "more") which then led to... 3. Mowh Pane ("more paint") 4. Ewwwwww!! (Hahaha... totally self explanatory, right?) 5. OOOS!! (for "oops!) 6. Keeeen (for "clean") 7. Stuck-urr (for "sticker")
I think its been a month since I last posted what words Koa has in his vernacular. He's building... slowly, but surely. He's getting more and more words that make us laugh, make us cry and yes, even make us go, "HUH?!" But then we laugh when we figure it out... it's so cute.
Here is his list from last month to recap:
1. Mama (my favorite!)
2. Dada
3. Ses (for Sissy)
4. Dih (for Dini the Dog)
5. Dah (for dog)
6. Eeya (for ear)
7. Eeee- tuh (for eat)
8. Che (for chip... how he learned that one I'll never know)
9. Shhzzz (for shoes)
10. Pih (for Pig)
11. Peez (for Please)
New Ones To Add:
12. ME! (As evident in the video below!)
13. No (usually said repeatedly, which is always cute)
14. Moo (as in cow sounds)
15. Moe (for more)
16. Pee (for feet)
17. Beebee (for baby)
18. Bah (for ball)
19. Har (for car)
20. Tat (for cat)
21. Kah-kah (for Kaukau, Hawaiian Pidgin for "Eat")
22. Bah (for bath)
23. Shi (for fish)
24. Cheyah (for train)
To update, there are more words that we have heard Koa say, but again, I have to reiterate that they haven't been consistent, so we can't count them just yet. These words listed are words that have been consistent and when he says them, he says them with the correct meaning and we understand him.
Unfortunately, there are some sounds that Koa seems to have lost, one of them being the "p" sound." He can say it for some words like, "feet" but in "please" it comes out as "eeeeze." Sometimes they come in and its "peeze" again, sometimes its gone. Again, more work to add to the pile.
Also, notice that a lot of the words are either the first sound or part of the word, not the whole word/ sound. This will come with tweaking as part of Apraxia is the missing of phonemes... Koa's getting there, and we're understanding him. It really is a wonder to see how far he's come thus far. We are so proud of him!
Auntie Kira sent the most amazing and inspiration note to Kekoa telling him how proud she was of all the progress he has made.
I know that Koa has been working really hard here at home and at Lucid with his SLP... not to mention also during his EI sessions with his Regional Center teacher. The frustration has diminished, but I can see that at times he still gets upset because he really is telling us something, we just still can't decipher his sounds. But at the same time, Koa has also gotten really patient with having to repetitively try again and again in order to communicate what he's wanting or showing.
Auntie Kira, the amazing Auntie that she is, recognized all of that... even from 300 miles away. :)
In addition to a beautiful letter she sent him (and Mommy and Daddy too!) she also sent him a little reward for all of his hard work... a Superman t-shirt, to show to the rest of the world the superhero he really is.
There are days when I could listen to Koa babble incoherently for minutes at a time and think, "Okay, he's definitely telling me something, unfortunately its just un-decipherable!" Sometimes I even have to laugh to myself and think that Koa's come up with his own language that's somewhat of a cross of English, Vietnamese, Filipino and Hawaiian... because really, its just that jumbled. Then there are days where Koa will respond so quickly and so well with his therapy that I think, "Well here we go!! We're making strides!!"
Koa works hard, no doubt. But Koa is still a baby by a technical standpoint. He's definitely still learning to self-regulate, having these outrageous tantrums, cries at the slightest head shake "no" from me or Daddy, but still will look to us for attachment and non abandonment. Case in point... he's still only 2. A part of me realizes, Koa is definitely growing up, definitely figuring out a lot of things out on his own, and DEFINITELY testing to see how the world works.
As much as we know that Koa has a disorder, we do our absolute best to make sure that not only does he get pigeon holed into this society, but we want to show him that while he's special in his own way, he doesn't get special treatment (i.e. getting away with murder) because of it.
One of the things that I have slowly been trying to do is show Koa that Mommy is always here for you; you may not see me, or Mommy may have to leave you temporarily, but I will always come back to you. Every speech session Koa, Malia AND I will trek it into his SLP's office for his 30 minute session. And each time I see that Malia is a HUGE distraction for Koa. And yes, even I am a distraction to him as well. Being a former preschool teacher, I know that kids always behave differently when parents are not around; my son, no exception. At Lucid, a majority of the kids go in to their session by themselves, yes even toddlers, just because they get more work done. We've been trying that each session with Koa, but each time he refuses and clings to my hand that much more. Its hard, and very heartbreaking. I want my son to get the most out of his sessions with his SLP, Miss Amber and I know that mine and Malia's presence is really a detriment to him.
For the past few months we've been trying a little bit of him on his own, testing to see how far he can go before he starts screaming for "Mama." Today, was a miracle. Okay, not really a miracle, but clear progress. Miss Amber opens the lobby door and says her usual, "Koa, come play with me!" Koa of course goes, but waits for me. If he sees that I'm not following him, he then shakes his head no, and then wedges himself into a chair where he can't come out. *SIGH* So I do my usual, take his hand and walk him into Miss Amber's office. Luckily Malia had started to walk out at that moment, so I tell him, "Ko-ey, Mama's going to go get Sissy real quick, I'll just be outside." To which Miss Amber closes the door.
Malia and I walk into the lobby and I brace myself. 2 minutes pass and I hear nothing. 5 minutes and still nothing. I pick up a book to read to Malia. Now 10 minutes has passed by this time and still no sound coming from down the hall, no Miss Amber coming into the lobby with a crying Koa. By this time 15 minutes have passed and I settle in just a bit. Read: my knuckles are no longer clenched white and I am now sitting back in my seat. :) 23 minutes now pass and a mom whose children have consistently had speech the same time as Koa looks at me and says, "Wow! This is the longest he's gone ever!" I'm thinking she's sensing I'm on the verge of tears and wants to comfort me. Then I hear on the other side of the waiting room door, "Say 'O-pa." "Pa." "One more try... 'Ohhh- Pah!" And then a loud "PAAAAA!!" And out comes Koa, tears in his eyes, but not crying or sobbing.
He MADE IT THROUGH THE FULL 30 MINUTE SESSION. I can't believe it. And just like I thought, he did excellent work. He did a whole bunch of sounds and even showed off his new word for Miss Amber- "ME!" My little boy is starting to grow up. He saw that while he was away from me, I was there waiting for him. Waiting to shower him with praise and hugs, kisses and high- fives. My heart aches for how much Koa accomplished today, and I can't wait to see how much more he will achieve.
When we got home, I video taped a few minutes of him trying to show off his new word "Me!" He's still camera shy, but he gets it a few times!
I can't even begin to tell you how many times I heard, "Koa's only (fill in whatever age Koa was at that moment)... he'll talk soon enough. You'll see." Sometimes I even heard, "Oh, he's a BOY. Boys are always slow to talk. Just wait. If he's not talking by the time he's three, then maybe you should worry. Till then, he's fine."
Being a mother I will always, always, always advocate to anyone with a child, if you feel that something isn't right, listen to that feeling. It can't hurt to ever question your gut and have things checked out. Honestly, I would have LOVED to have gotten Koa evaluated and then have someone tell me, "Mrs. Vu, you've completely wasted your time and ours; your son is perfectly fine." But the truth of the matter is, that didn't happen. But rather, I was told, "Yes, Mrs. Vu, we will have to do some further tests because there is cause for concern." And you know what, I don't regret getting him checked out. If I never followed my instinct, if I shoved away that little voice that told me something had gone wrong with Koa's development, Koa would not be getting the treatment that he's getting and really, he wouldn't be any better off than he is today.
The reason why I've brought this little tidbit up is that a very interesting article was published recently on the "wait and see" approach for parents of late talkers. While it has concluded that about 70-80% of toddlers CAN outgrow a language delay, only if it is an expressive language delay; a still significant portion 20-30% will not catch up to their peers. Do I really want to take that chance that my son will or will not fall into that latter percentage? Do I pray and hope that he falls into the greater percentage? Of course! But I need to keep reminding myself, Koa was also diagnosed with a mild receptive delay as well as a oral apraxia, not just verbal. As a parent, why would anyone really take that chance? Hope, yes. But gamble on a positive outcome for your child? Why? I thought parenting meant just that; taking the reins and making sure that your child gets the most and best that you as a caretaker could ever really give.
