Thursday, September 20, 2007

A Wordy Post on Words.

BubandPie asked a question regarding the ability to relate experiences in the comments of my previous post (if you haven't read it, you might want to read it before this one). I started to answer her in email form, but it grew of its own accord into a blog post. I hit on a few examples of the subtle shifts in KayTar's language and I thought it might be helpful to share. I still don't think my explanations can really give an accurate picture of how different her language skills are, but it might just give you a peek at what it can be like.

The skill of relating experiences covers a broad area. Basically, it has to do with their ability to relay a story to you. For example "BubTar hit me!" or "KayTar go (went) outside." KayTar cannot do this, but she does something that almost mirrors it. Remember when we went on the walk the other day and I said she continued to talk about it? That was a true statement, but she was not talking about it to us, she was talking to herself. She wasn't trying to relate the experience, she was replaying it for herself, word for word as it happened. "I see cat! Where cat? Meow." and so on. An observer might say, "She's telling you she saw a cat! That counts!" but it doesn't actually count, because she is just rehearsing the exact same scene to herself. That falls under echolalia/scripting rather than relating experiences; my hearing about it the experience is just a by-product from watching her recreate the scene for herself. We are in no way involved in the equation, unless I had a part in the initial activity, then she will expect me to repeat my lines, or echo her lines. She never purposefully relates and experience to me. She doesn't know how to, and truly, she doesn't feel the need to do so.

Remember in the Party in My Crib post where KayTar conveyed to me what was happening? As in, "Fall down! Mama! Fall DOWN!" when her Chicken went MIA? What I didn't include write is that I went in her room due to her crying out "Chicken! WAAAAAAHHHHH! Chicken!" about 10 times before that exchange. I found Chicken on the floor and said, "Oh no. Did Chicken fall down? Yes, Chicken fall down. Can you say that? Say 'Chicken fall down.'" and had her copy me each time I went in. It eventually evolved into "Fall down! Mama! Fall down!" because she knew that is what I wanted her to say. She wasn't spontaneously telling me what happened, she was repeating what I taught her to say to elicit a response from me. If I had said, "Did Chicken fall down?" she couldn't and wouldn't respond with "Yes." she would parrot "Fall down." (which you will notice are the last two words I said, not a spontaneous reply either) because she doesn't understand what really happened, she just memorized what she is SUPPOSED to say. Much like when she says "A-gah ka-sanks." when she tries to give me something and I prompt, "What do you say?" she adjusts it to "Take it!" because that is the expected set of words for the occassion, not because she really grasps the meaning.

Another difference I've mentioned before is that she can't answer the questions, "What?" or "Why?" even with the aid of her scripting. She just can't fathom it at all. She just parrots the questions right back at us. It makes these conversations fun:

Her: Help.

Me: Help what?

Her: Help PLEASE.

Me: No, help please WHAT? What do you want help with?

Her: Help please.

Me: What are you doing? What do you want me to do?

Her: Do.

Me: Do you need help?

Her: Help!

Me: Why do you need help?

Her: Help.

Me: Do you want me to help you?

Her: Help you!

Me: No, Mommy help KayTar....what?

Her: Help KayTar.

Me: Help KayTar what?

Her: Help KayTar please.

Me: What do you need Mommy to do?

Her: Mommy-a-do.

Me: Show me.

Her: Show me.

Me: I don't know, baby.

Her: *long pause* Help please!

Me: *pulling hair out at roots*

She has recently started to come up to us and say, "Walk!" and walk away expecting us to follow her. She glances over her shoulder to make sure we are following and then she takes us to what she needs or wants. She can't do it when asked, "Show me." or "What?" but she takes action of her own accord because of the deficits in her verbal skills. The action is not tied to any words, it just stems from her reaching her frustration level with the lack of communication and has learned that making us follow her is easier than trying to use words she doesn't truly understand. I'm trying to attach words to it for her, by saying, "Are you showing me?" (to which she replies, "Show-n me.") while we are walking or "What do you want help with? Oh! You want help with your puzzle. Say 'Help with puzzle!'" Eventually she will make the connections.

I know it sounds incredibly picky and perhaps like it shouldn't matter at all, but it extremely important when interacting with her. There is a forced/halted feel to our interactions. I have to say the exact same things to get a response. It feels like she and I are in a play everyday where the lines don't change. The action sequences change, but the same lines are applied no matter what. Or, like I've mentioned before, it is like talking to a foreigner who has a mental English translation dictionary full of "helpful phrases" that are used over and over. It is a huge list at this point, large enough to fool people into thinking it is fully understood, purposeful speech, but it is still largely regurgitation.

An example of a conversation she only understands one way:

Me: What is your name?

Her: Name.

Me: Who are you?

Her: A-jou. (are you)

Me: *touching her chest with my pointer finger* Who is this?"

Her: TiTar! (KayTar!)

Explaining this makes me feel kind of neurotic, like I am looking for something to be wrong when there really isn't. BubandPie hit the nail on the head the other day in this post, "I feel vaguely embarrassed, as if I've been revealed as some sort of Munchhausen-by-proxy mother, seeking attention by obsessing over her child's minor quirks." But the truth is, there is something wrong, it just hides itself well. KayTar has mastered "Fake it 'til you make it." This causes problems in a myriad of ways, because unlike 6 months ago when she had only a few words and her delays were obvious, now they are subversive. It takes a very detailed and close look at her to realize what she is doing. Her echolalia is not the meaningless repetition of a word over and over for self-stimming purposes, it is intricate. She has hundreds of memorized scripts for various situations and has learned to use them well without really fully understanding them. She does understand certain things, I don't mean to imply she is completely clueless with her speech. However, for each thing she does understand there are two to three additional things that she can give the appearance of understanding without really grasping it. The biggest issue will be qualifying for district services, I'm going to have to push for a really thorough evaluation or it could easily be missed. The ST said if she doesn't continue to receive services it will definitely affect her academics. She also said that most people will continue to think KayTar is age appropriate and therefore have unrealistic expectations of her abilities. The girl puts on a good show! It reinforces how intelligent she is, because even though she really doesn't understand language, she has found a method to use it as a tool in spite of that. Most toddlers understand more than they can speak, KayTar speaks more than she understands.

This morning we had the following exchange:

Her: Tiny! Tiny duck.

Me: Is your duck tiny?

Her: Tiny duck.

Me: Is tiny big or little?

Her: Wittle.

Me: Is tiny little or big?

Her: Big.

And this one as well:

Me: KayTar, get the remote.

Her: A-mote. *mimicking button pushing with her thumb* (I don't know if this is an actual sign or not. LOL.)

Me: Can you get it? It is on the table. *pointing*

Her: Table *pointing in same direction, but at nothing*

Me: It is black, see it?

Her: See it.

Me: Can you get it?

Her: Get it.

BubTar: Here's the remote, Mom.

He gets tired of our jabbering at times and steps in to "help". The point of course was not my inability to get the remote, it was to see if KayTar could figure how to follow the command, even if I had to continue to give additional clues or even walk over and put my hand on it to help her find it.

The solution is of course, continued speech therapy, as well as continued work with her at home. The goal is now to teach her concepts rather than word absorption; instead of getting her to just say "Blue block." I need to ask, "Is the blue block INSIDE the box or outside the box?" or "Are the fish in the water or in the sky?" or "Do birds fly or swim?". When reading books, I need to ask, "Is the boy jumping or sleeping?" She also suggested taking a series of photographs when we are out and about and print them later for KayTar to look through with us while we give her words to describe the experience, "We went to the park. KayTar went down the slide. We saw a flower. We walked home." She said initially, she will regurgitate, but eventually the concepts will sink in and she will become competent in in her speech. Right now, if I had to give a percentage of her vocabulary she truly understands, I'd have a really hard time. She understands 100% of labeling...but concepts are much lower, definitely below 50%, maybe closer to 10% even at this moment in time. I'd say out of everything that comes out of her mouth in a day, she truly understands an average of 50% of it, maybe. These are super rough approximations, though...definitely not scientific in anyway.

In spite of this, she surprises me at times. Last night she had her half empty block crate and she said, "Fish-e-water! Splash splash!" clearly pretending her hand was a fish and the crate was a tank. Later she held her hand like a fishing pole and said "Fishing! Reeee big fish!" and held her hand up like she had caught something. And still later, she pretended the crate was some sort of trough and she pretended to eat out of it much like a pig...this one evolved into it being a box of sandwiches, "Mmmm. Sa-wich! Eat it." Whether the words are from something she has previously witnessed or not (I have no clue if they were), she came up with the imaginative situations all on her own, pretending that something clearly meant for one thing served several totally different purposes. She played out several different scenarios using the same prop, with no suggestion from anyone as to what it might be. This is the first 100% spontaneous imaginative play I've ever seen her engage in. It was pretty amazing. Today she did it again with Legos and the top of the toybox. The Legos were a car, and the toybox was the road. "I racing. Vroom vroom. Racing." She also called the living room a "playground" and pretended to go down a slide and swing on a swing, exclaiming "Wheee!". New things are emerging all the time for her.

Does your child engage in imaginative play, such as pretending to care for dolls? Yes!

Again, if you finished this, gold star! I don't know how much sense it made for people who haven't actually interacted with her, but it was the best summary I could give of what her verbal deficits are like and what they mean for us in day to day situations. It all still feels very jumbled and blurred, but I hope this made things a bit clearer. I didn't include examples of her accurate speech, because I was trying to represent the portions that stand out as abnormal. Her speech is not 100% abnormal, and I don't want to mislead anyone into thinking it is. I also don't mean for this to downplay her verbal explosion in any way, because that is extremely exciting and we couldn't be more thrilled about it. This is just the other side of the coin for her, what it means to have a vocabulary that exceeds her understanding and how it plays out in her daily life. It is important that I learn to explain these things, because soon, I'll be explaining it to the district evaluators and a new set of therapists and teachers. I hope by that time I've learned to say it in fewer words. ;)


joker the lurcher said...

this was really interesting to read. what comes across most of all is how those of us with special kids get pulled into a whole world of their developmental goals and all that. it is really hard not to get sidetracked and forget that this is their childhood and we should just enjoy it. i sometimes look at the parents of 'normal' children and see how they just get on with it and contrast it with the world of those of us with this stuff to deal with.

she is very lucky to have you as her mum, with all the effort you put in. keep plugging on!

Bea said...

Most toddlers understand more than they can speak, KayTar speaks more than she understands.

That was exactly Bub's process of language acquisition as well - and it was what led to our referral, though this fact apparently caused amazement and consternation when I mentioned it on Tuesday.

Kathy Gillen said...

Okay, I admit it took me two readings to make it through your post, but it was really facinating. I'm so impressed with the intimate level at which you understand Kaytar and her needs. Although you may pull your hair out with the questioning and guessing at language, it is wonderful to see your level of love and committment coming through your posts.

moplans said...

Kyla this is amazing. You know her so well and I was so glad to read the ST thinks she will continue to figure this all out with your support.
Also very interesting that this was Bub's method of language acquisition.
These brilliant interesting kids. Lots of work but well worth it.

Run ANC said...

Have you ever considered becoming some sort of therapist yourself. Your powers of observation are nothing short of amazing. KayTar is very lucky to have you for a mom.

moplans said...

Ps that photo is priceless.
My older girl keeps listening to all of her dolls with her stethascope as this is what she sees us doing to her little sister.

Anonymous said...

Language is a much more difficult thing to acquire than most of us realize. Keep fighting for her, you're her best advocate.

Julie Pippert said...

Your explanations and demonstrations add a level of sense and understanding...especially the echoing, and the line B&P quoted.

I will say with Persistence...

We have some similar sounding maddening discussions. Her comprehension of the "what" versus "where, when why, how, etc." isn't quite there.

But, she grasps I am asking.


P: Kitty meowing.

Me: Why is kitty meowing?

P: Meowing Mom, kitty meowing.

Me: Okay but WHERE is kitty and WHY is she meowing? Is she in the living room? is she hurt?

With a little more guidance she gets what I am after and I can get the answer. You are saying you don't get there. That makes sense.

Thanks for all of the info. This post needs...I don't know, wide reading is what I am trying to say I think.

Using My Words

Beck said...

That was a fascinating post. My oldest child has a severe speech disorder (which is barely noticeable now, just the slightest lisping accent) and when she was a toddler, she was impossible to understand. It's scary how quickly they must pick up languange, isn't it?

Em said...

As you know, I "get it" entirely. Willow has always had to consciously learn language - in the same way that an adult might consciously learn a foreign language. Willow is bright so she has learnt to speak well but it doesn't change the fact that it is a very learnt/conscious process for her. EG, when we had her speech evaluated her grammar was in the 50th percentile because she has learnt the grammar by using the phrases over and over again... but this masks the fact that her constructions are learnt and not spontaneous. Her 23 month old sister speaks with more fluidity than Willow does... okay, now i've gone and hijacked your comments section again :)


flutter said...

Wow, Kyla I just have to say how amazed I am with your grace.

Anonymous said...

I'm so glad you wrote this because I understand so much more now.

I think you're an amazing mom with amazing kids. Please vanquish the plague so we can meet up, huh?

Kyla said...
This comment has been removed by the author.
Kyla said...

See, the tricky thing is, KayTar wouldn't even get as far as "Kitty meowing." It is a combination of skills she doesn't have, relating an experience and telling you what is happening to someone other than herself. It is incredibly complex when you think about it. She is letting you know what she hears AND what the cat (someone outside herself) is doing. KayTar never discusses others...never "Dog eat." or "BubTar play." or "Mama walk." The exception to this is that she will say "Daddy work." when she can't find Josh. She used to cry for him daily, and I would sign/say "Daddy work." and now when she looks for him and can't find him, she knows that is what we say.

There is something else here I wish I could explain, but I can't quite pinpoint it.

Aliki2006 said...

This was fascinating--I so admire how in tune you are with Kay-tar, it's amazing.

S said...

Kyla: Print this one out and hand it to whoever will be working with KayTar. It will be so very illuminating.

Your powers of observation are striking.

Janet said...

I think you did an amazing job of explaining what it's like to interact with KayTar. Your knowledge of the language and concepts of speech acquisition are incredible.

Anonymous said...

ditto slouching mom, there will be tons of posts on this blog that are perfectly suited to printing and handing over to the district members working with Kaytar. I am also stunned by your powers of observation, it's no mistake that these kids were given to us to parent.

Anonymous said...

I am so far behind and have so much I want to say but all I really can think of is ... Kaytar is so lucky to have you. A mom who knows her so well and who understands her so well and who loves her so fiercely. I feel really lucky to know you.

~aj~ said...

Can I just take a minute to tell you what an amazing mother you are. I know you couldn't imagine doing anything differently for KayTar, but I know that there are a lot of "good" mothers out there that wouldn't even understand the depths of KayTar's difficulities, let alone put forth all that work to help fix it.

It's very interesting to learn more about her speech and thank you for taking the time to share it with us. Maybe the evaluators should just start reading your blog to understand KayTar better!

PJ said...

Dittos to "You do an amazing job". An excellent therapist is able to enter the world of the patient/client/child to be able to experience the environment as does the patient/client/child. You provide a window for all of us into KayTar's world. From your descriptions, I get the tiniest glimpse of how the world must appear to her. She's a marvelously courageous and resilient little girl who has the support of an amazing mom!!

God Bless!


carrie said...

I think you did a great job of explaining it for those of us who aren't familiar!

And -- you're doing a great job with her, too.

JSmith5780 said...

Amazing that you put into words something I try nearly every day to explain about my son. He's 3.5 and on the spectrum. He was in integrated program and lost ALL of it because it 'looked' like he was doing so well. On paper, he was, but it is issues exactly like you describe that show how critical it is for him to continue getting services (we did finally get them back). His speech is actually great, but he can't relate stories, he can't engage in a conversation. Yet he can have a running commentary with his Thomas trains and script an entire Thomas movie. He's far better than he was a year ago and gets a little better every day.
Thanks for your insightful post.

NotSoSage said...

Again, Kyla, I'm just so impressed with how observant you are and I think she is so, so lucky to have you.

Anonymous said...

... and THIS is why you should go to nursing school! :)

Mad said...

Wow! This post was amazing. I was engrossed from the beginning and couldn't help but think that it would make a good resource for other parents who are trying to articulate these issues with respect to their own children.

And KayTar? I love the way she is using her brains to be subversive in her use of language even if her doing so puts a spanner in the works when it comes to charting her progress.

OhTheJoys said...

Sometimes when I read about you and her I feel tired for you or in awe - unsure how you manage.

Today I am struck by how much you are learning from her.

Chicky Chicky Baby said...

Wow, now that was a marathon post. But it's obvious you care so much for your kids so the words are necessary.

Sarah said...

Your a wonderful mother, you deserve a Gold star. It was very interesting reading this post. I think you expained yourself very well.

And, how sweet of BubTar to "help"

Katie said...

Very well explained. I understand, due to the nature of my profession, but I think you offered an excellent explanation. Now you get the gold star ;)

Christine said...

this was so informative and interesting. my friend had a little boy with similar scripting type language. he is 10 now and doing wonderfully.

Lori at Spinning Yellow said...

You have a way with words!

I think I've only lurked here, but finally went to your medical summary post so I could get a clue.

Thank-you for writing this, for your excellent descriptions. One of the main reasons why I am blogging is to raise awareness and understanding for Sensory relate issues (my son has SPD).

And this, THIS, is so helpful for people who see a child and think "well she talks, what's the problem?" Because it is so complicated but also clear when you really look and take the time to understand.

Anonymous said...

That was really interesting.

I also found myself thinking how much you have changed in the past year. Reading your posts from a year ago, you have learned so much about KayTar and what is going on with her. Where you used to wonder a lot, now you have concrete examples and observations what you write about so clearly that those of us who have never met you can get a real understanding of what you are dealing with. Hooray for you!

Junie's Blog said...

Very interesting Kyla! I feel I have a better grasp of Kaytar after reading this post. It seriously took me a long time to read it but it was well worth it!!! Thanks for allowing a glimpse of your world with Kaytar.