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. ;)