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.
Every year CASANA does a conference for parents of children with Apraxia, Speech and Language Pathologists, professionals, educators, and anyone else who may want to attend. They put on an intensive three day conference with different workshops, panels and speakers from everyone who work in the field, to having Nancy Kaufman (developer of the Kaufman Praxis Treatment Method, which is currently being used with Koa) speak.
This year the conference took place in San Diego, which is literally only an hour from our home. Martin and I considered heavily on attending, but with finances, and really, Koa and Malia just not being ready to be away from us for 4 days, we decided that this year couldn't be our year to attend.
Luckily through modern technology, CASANA had posted a few videos from the conference for us parents who couldn't make it. That way we could benefit still from what was shown and sort of keep us in the loop.
One of my favorite videos is from their opening keynote speaker where they talk about a book titled "I Want To Be Your Friend." This book was written by a mother, whose daughter has CAS. She wrote it so that those who work with her daughter, in the schools and around, could know a little bit more about her daughter's condition, in the hopes that this would explain a bit more.
The book was read by two teenage kids who also have CAS. I feel that it was a great idea to have them read this aloud because it allowed us parents to see that here were two well adjusted young adults, living with the condition and able to function in everyday life with the disorder.
Between the two teenagers, and seeing that there was plenty of hope for Kekoa, and listening to the words of this book, once again I was brought to tears. But most importantly I was floored. I loved seeing how these two young adults, brought themselves to this daunting task of not only getting in front of hundreds of strangers who were to be fixated on them, and listening quite intently on their every sound, but they did it knowing that there could be a possibility that their disability would make it harder for them to complete that task, yet they did it with such grace and composure. Already, thats a hard thing to do, get up and speak publicly. But they did it beautifully. :)
One thing that is common with a child who has Apraxia is that words may come and then not come back again. We've heard Koa come up with all kinds of responses that would shock us, or make us laugh, and then we never heard them again. For instance, one time about 7 months ago, I looked at Koa and said, "Hey buddy, you ready to go moi moi (Hawaiian pidgin for 'night night')?" He looked me clear straight in the eye and said "No Thanks." It was that precise, that clear. I was taken aback. "No thanks?!" I repeated. And immediately his mouth closed tight and he got that unsure look about his face. From that point, I never heard anything again sound even remotely close to it.
But now, Koa's been making some really good approximations for words that Martin and I both understand and we know he's using with purpose. I can even start to list a few: Mama (my favorite!) Dada Ses (for Sissy) Dih (for Dini the Dog) Dah (for dog) Eeya (for ear) Eeee- tuh (for eat) Che (for chip... how he learned that one I'll never know) Shhzzz (for shoes) Pih (for Pig) Peez (for Please)
There's a few others too that I know he can somewhat say, but I didn't want to list them or mark them off just yet, just because he's not consistent enough in using them. I wanted to make sure that the words I list (for progress and milestones sake) are words that we know without a doubt that he could say over and over again and know that what he's saying has actual meaning to what the word is.
He's getting there. Its still a journey, but he's definitely getting there.
P.S. Koa's also started to blow away some of our family members with how well he's been doing with the Kaufman cards (basic level)... if only I could get a video of it to post on here, that would make my day!! Unfortunately, Koa clams up as soon as he sees the camera. :( I'll get it though, stay tuned!!
