The posts I haven't been writing

If you've noticed, things have been pretty lighthearted around here lately. This is what you might call avoidance.

A couple weeks ago, I casually mentioned to KayTar's pediatrician that she doesn't feel the intensity of cold. As in, she doesn't notice if you drop an ice cube in her diaper. Or if you let her have the freezer pack to hold on an owie, she will put in under her shirt on her tummy until you forcefully take it from her. Or you could put your fresh from the fridge soda can on her bare back and she would just smile at you happpily. There is no typical response to cold, no sucking in of breath, no shudder, no wriggling away. She loves it actually and we have to keep her from it, or she doesn't know how long is too long. I just thought it was another sensory quirk to add to the running list of oddities, but it sent the pediatrician in a new direction. Evidently, there are a few different genetic disorders tied to the chromosome where KayTar has a mutation. This new symptom made her look into those again. The neurologist doesn't feel any are a good solid fit, but I think we are re-examining some things. What it boils down to is that the place KayTar has a mutation is connected to various calcium channelopathies, so while it is not a known and studied mutation, it does not mean it is innocent. The calcium channelopathies would look like a Venn diagram if you plotted all the various symptoms...there are many overlaps. So whatever her mutation causes, it would likely have overlaps as well, even though it fitting the known genetic disorders perfectly might not happen. We see both genetics and neurology next week, so hopefully we will have some new information soon.

Also, the pediatrician said that KayTar's drop attacks and involuntary eye movements might be seizures and she is talking to the neurologist about having us do an inpatient prolonged EEG. We still might not be able to catch one in action, but we'd like to try everything we can to get a solid answer. An abnormal EEG is clear cut, but a normal one doesn't mean much at all. So even though we keep getting clear ones, it doesn't rule seizures out. Dandy, right?

In regards to yesterday, here is the long and drawn out version. We drove in from out of town late morning/early afternoon. Once we got home, KayTar napped and post-nap we went out shopping (for a rock polisher, oooh!) and to get BubTar's haircut. When we arrived at the first store, KayTar was painfully light sensitive in the parking lot. Once we were indoors she was fine and when leaving the store, the sun did not bother her. From there, we went to the toy store for a haircut and the continued search for the elusive rock polisher. She was still fine. She was enjoying herself walking around the store and took a ride on the little fire engine in front of the store. We got in the car and drove to yet another store to find a rock polisher. As Josh was unloading her, he called me over. Something was going on. He rebuckled her, I rebuckled BubTar, and we headed home. Her eyes were darting all over and she was holding Josh's baseball cap over her head and crying. Eventually she gave up on the hat helping her and threw it down. Her eyes were bouncing up and down and all around while in the car, she was alternating between covering and rubbing them and leaving them alone. When we were minutes from home, she just stopped fussing. Her eyes were closed and she said, "What color?" so I said "What color?" and she started naming colors, and prompting me to ask again. I don't know if it might have had anything to do with an aura, because a two year old isn't a great source...but it was a distinct change in her behavior and its not typical for her to play "What color?" with closed eyes. Maybe it means something. I guess we can't know for sure.

Once we got home, she was continuing to have strange random eye movements. They would flick, roll, twitch, jerk, misalign with the other. It was strange. She was aware of it happening, because she would rub them or hold them closed at times. We were in a room with windows, and the sunlight was not bothering her. She cried some, but didn't seem to be in much pain. The eyes twitching about was the strangest part. She was aware at times, other times not responsive at all. After about an hour, she threw up. After that she wanted to be in the dark. I'm guessing that the movements of her eyes made her nauseas and that once we were in the complete dark (literally, closed into the hallway where there are no windows) the motion was easier to handle. She couldn't see the world jerking to and fro. The eye movements were not non-stop, but they happened on and off throughout and were the most prominent feature. At 8:30 she fell asleep and woke at about 9pm completely herself again.

What was it? Who knows. I sent the pediatrician a video and she doesn't think it is seizures, but we can't know for sure. She said it could still be related to migraine, although the eye movements are not characteristic of migraines with her genetic mutation it could all be connected. She's sending the video along to the neurologist to get his take on it. I'm feeling confused and a little frustrated. All of the recent abnormal activity has focused in her eyes, I am concerned we are missing something happening in her brain that is causing all of this. I don't want to write it off as part of the migraine syndrome when we don't really know what is happening. It was different than a typical episode, although similar in some ways. Maybe an evolution of some sort, but if so, I want to know why it is happening. I'm ready for some answers, even a few. Something concrete to go on. Anything more than an educated guess.

Oh, and because the last two have happened on days we've arrived in from vacations, chances are the stress of being away from home is too much for her body and it is triggering these reactions in her. So, no more vacations for for an indeterminate amount of time. It just isn't worth it if it causes her all of this pain and distress.

I think I have purged all the information that has been rattling around in my brain for the last week or two. Here's hoping that next week brings us some answers, because we are all feeling a bit like this:

Ack

We're home, safe and sound. Vacation was nice. More on that in a later post.

KayTar had an episode, event, seizure, migraine, whatever you want to call it tonight. I'm really tired and can't really put a cohesive post together on it right now. Monday night, the night before we left for our little getaway, I had a dream about KayTar having seizures. We were some place new, we couldn't get in touch with her doctors and I couldn't get her to the hospital for some reason. The whole dream was me trying to get her to the hospital. I woke up panicked. It was one of those dreams that sticks with you, and every time I looked at KayTar, I saw her as she was in my dream. This evening, I couldn't help but note the timing of the dream. Thankfully we were in town when it happened, I don't know what we'd have done if we were still away. The last time KayTar had something like this, it was also on the day of arriving in from out of town. I don't know if that is a true connection or just a coincidence, but it is a fact nonetheless.

KayTar is fine now. It lasted about 2.5 hours, then she slept a bit. There are many more details, but I'm not up to typing them out. Once she woke, she was herself again.

I'm sure I'll have more to say tomorrow after speaking with the doctor, but tonight I'm too tired to say anything more. Hopefully I'll have time to stop by your blogs in the next few days, I've got 140 new posts in Bloglines and it will only grow in the morning.

Be Back Soon

We're on vacation, so I won't be around for a few days. I leave you with this video I captured of BubTar singing along to Hanson in the car the other day. He is holding a mirror and signing to himself while watching his facial expressions. ENJOY!

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For the record, we were safely at a stoplight while I was recording. ;)

Subtle misunderstanding

Last night I went out to dinner with my sister, her husband-to-be, and a friend. During dinner, Josh called because we were out of diapers at home and he needed me to pick some up on my way home. Once I got off the phone, a conversation started about who does what in each of the relationships. Here for instance, Josh cooks and does the dishes, and I do the laundry. We talked about it for a few minutes and then the conversation shifted to our children and my sister said, "Kyla is strict."

And her friend looked at me strangely. She said, "How are you strict?"

Me: I control his content. You know, he can't watch certain shows or listen to certain music.

Friend: (very serious) Why? Why do you do that?

Me: Because he copies EVERYTHING. So I can't let him watch inappropriate things.

Friend: (looking very shocked, at at a loss for words)

Me: Well, he's only five, as he gets older, we'll adjust the rules.

Friend: Oh! You're talking about your SON! I thought we were still talking about husbands! And you said you controlled his content! And that he couldn't be allowed to watch certain things because he copies inappropriate things! I couldn't believe you only let your HUSBAND listen to certain music! I missed the conversation switch, and things were getting strange!

I almost spit my food across the table! If you replay that conversation with Josh's name in it, it is quite amusing.

Sister: Kyla is strict.

Friend: How are you strict?

Me: I control my husband's content. You know, he can't watch certain shows or listen to certain music.

Friend: Why? Why do you do that?

Me: Because Josh copies EVERYTHING. So I can't let him watch inappropriate things.

Friend: (looking very shocked, at at a loss for words)

Yeah, I think I would have had the same look on my face, too.

Questions

Me: Which one?

KayTar: A one. *pointing*

*****

Me: How about we watch Oswald?

KayTar: Ow bout a DooDoo! (Pinky Dinky Doo)

****

Me: Would you like milk?

KayTar: Ow bout juice!

****

Me: What color are your shoes?

KayTar: Deh! (red)

****

Me: Where does it go?

KayTar: Ight Eeer!

****

Me: Would you like to eat?

KayTar: Ungry! Eat foo...bean beans.

****

Me: Where is Bubba?

KayTar: In ere. *pointing* Ind him!

****

Me: Who is that?

KayTar: BubTar.

Me: Who is this? *pointing to KayTar*

KayTar: Ti-ti!

****

KayTar: Weeeell? Wha a do? (Well, whatcha gonna do?) She shrugs her shoulders for this one.

****

There is definite progress being made on the question and answers front. She is practicing a lot, but I think she is really starting to grasp it. I think she understands a question needs an answer instead of an echo. Her answers are typically one size fits all, but it is progress and she is learning more and more proper responses all the time.

Her developmental therapist was in awe this week of the progress she has made since she saw her last Tuesday. She's saying multisyllabic words, she's answering questions, she is speaking in sentences (some of the time). I scarcely had to translate any of her words for the therapist. Her speech therapist is going to be through the roof the next time we see her. It is just so unbelievable. Hell, its miraculous.

Marriage, as defined by a 5 year old

BubTar: So tell me about when you and dad got married. Were you parents then?

Me: No, we weren't parents yet. A few months after we got married, then I got pregnant with you and then you were born a while later. That made us parents.

BubTar: What made you get married?

Me: Well, Dad asked me to marry him and I said yes. So we did.

BubTar: Ohhhh! So he thought you were like the prettiest girl, and you thought he was the prettiest, uhhm, I mean COOLEST guy...so you got married?

Me: Sure.

****

Tonight at bedtime:

BubTar: I never want to get married.

Me: Why?

BubTar: Because I'm so shy and I don't like kissing anyone, except parents, and only MY parents who are not strangers, and KayTar too. I don't want to get married and have to kiss someone.

Me: Okay, baby. But you might change your mind one day...and that would be okay, too.

Perfection and Perserverance

BubTar is a perfectionist. I'm sure in some situations the drive for perfection is an asset, but at age five, it is a hinderance of immense proportions. The drive to do things right is robbing him of experiences and enjoyment.

He cannot draw, because his pictures never turn out like the images in his mind. This leads to crumpled papers dampened with tears and a child sobbing into my shoulder.

He cannot play with blocks or other building materials, because he feels compelled to make things just like the diagrams and he can't follow the directions just yet. He does not allow himself the freedom to use his imagination to put them together in fun and creative ways. There is one correct way to build and if it cannot be accomplished all is lost. This leads to blocks dumped on the floor, with a small child sobbing in the midst of them.

He cannot practice writing his letters, because if he allows his pencil to leave the dotted lines, even for a split second, he has failed. "I can't DO it. It is RUINED." and he puts his head on the table and cries.

He cannot complete mazes, because one wrong turn is the end of the world. "But I already went the wrong way! It's ruined now! See? See the mark? I went the WRONG WAY!" He shoves the book away and cries, "I just CAN'T DO IT!"

But he can. He can do all of these things and more. He does them amazingly well for his age, he just can't do them to his own satisfaction. He needs to do it the right way, and there is only one right way that is acceptable to him.

In the beginning, I'd let him walk away. I'd say, "If it upsets you this much, you need to take a break from it. Go cool down." But that became his pattern. He would make a small mistake, explode from his huge failure, and then walk away. He became a quitter. As soon as he made a mistake, the tears and outrage came, followed by defeat. I allowed it to happen. I facilitated it even.

Now that he is home for the summer, I've noticed the pattern much more often. Almost everything he attempts is met with tears and frustration. I am trying to teach him to push through and that doing his best is all he can do, but it is a difficult lesson. Now instead of letting him walk away, I give him a good long hug and let him cry on my shoulder before asking him to calm himself and try again. I reinforce that it doesn't matter if it is perfect, it matters that he tries his best and completes what he is attempting. At the same time I wonder if this solution is any better.

As children grow, you begin to realize that the issues that you are dealing with at any particular moment are not isolated. The behaviors I encourage or redirect at this point in his life will stay with him. He is beginning to grow into himself and it is my job to help guide him in that. In this moment, all I want is a happy child who is able to play freely and creatively, who is not burdened by his own expectations of greatness. He is only five. I don't want to squelch his drive, but I want to teach him that things don't always come out perfectly and that is okay. We all do our best and that is what is important. Sometimes our imagined best and our actual best are not the same, but it doesn't mean we should stop trying to make it there. I want his perfectionism to challenge him to keep trying, not to upset him so much he stops trying altogether. I'd like for his perfectionism to lead him to perseverance, not make them two warring factions in which he has to choose a side.



Can anyone tell me why this passion for perfection does not transfer into the cleanliness of his bedroom? ;)

Lots of gushing.

I'm sure there will be lots of gushing about progress and videos of speaking in the near future of this blog. I am just so ecstatic about the progress she is making. Every day she really is learning to say new things. Yesterday it was her name, which we've been trying to work on for months with no response. Of course, she calls herself "Tee-tee." which isn't SO far off from her real name, but still completely funny. Oh, and she loves to go to Noggin.com (she says noggin!) and watch Pinky Dinky Doo, who she calls "Doo Doo". So, if she and Pinky were to get together, you'd have Tee-Tee and Doo Doo. We are immature and think this is HILARIOUS! Last night at bedtime, she said, "Nigh nigh, Doo Doo. Ajur. (later) Bye!" Words! So many words!

When I put in her hearing aid, she says "Ow sound?" and then I ask her "How does it sound?" and she says "Great!" She doesn't call Spongebob Squarepants, "BobBob" anymore. He is now BobPants, which I think it more sophisticated, don't you? If I push her for syllables, she will call him "BobBob BobPants". She can say "playground" now! She is singing now, at least attempting it. She has never done that before.

She also has two scenes she likes to act out. In one, she taps her forehead the her index finger while saying "Kink, kink, kink.(think)" and then she exclaims "I know!" and holds the index finger up high like she has an idea. The second, she mimes a big sneeze. "Ah-ah-ah-ah-ACHOO!!!" She puts her hand to her nose for the "Ah" and throws it towards the floor for the "Achoo". She was cracking her physical therapist up yesterday with those two gems.

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I've been taking short videos like crazy...I don't want to miss any of these new things! It is really exciting. Thus, all the gushing.

And a funny BubTar story, just for kicks. This morning BubTar was the last to rise. He was sleeping on the couch because when he gets scared in his room, we let him move to the sofa if it is almost morning. The living room is directly off our room, so it makes him feel safe to be closer. He hopped up and looked confused because KayTar and I were both awake already.
He asked: Where are we going? Neptune's Paradise?
Me: No.
Him: (still confused) Is Neptune's Paradise real?
Me: No.
Him: Oh, so it is just for people who live on the bottom of the sea then. Okay.
Then he wandered off, like we had had some sort of satisfying exchange.

Yesterday we played the world's longest game of Crazy 8's. It was 45 minutes long! I may have accidentally taught him to say "Take that, Sucka!" which he said EVERY time he put a card down. I told him, "Hey, maybe it would be better if 'Take that, Sucka!' was just our thing when we play cards. You probably shouldn't say it to anyone else, even though it is funny." He thought for a minute and then said "Maybe I could say 'Take that, Momma!'. That is funny, too." Wise boy. Not that I have a problem with him saying "Take that, Sucka!" I just don't want him saying it at inappropriate times, like to his principal on the first day of school next year. ;) We've been having a lot of fun lately. I can't remember anything in particular, but I can remember lots of laughter, which is always a good sign. At bedtime we giggle together before I tuck him in. During game time we giggle. While we read, we giggle. Lots of laughing. Five is a fun age.

Kinks and Thinks

Well, the first two days of fully functional ears were a bit bumpy. Initially, as I told you all, the ear molds aren't quite right and it causes a painful squeal. Since then I've learned to get them in a little more securely and it has cut down on much of the squealing. I'm actually leaving the aid on full time now, and it seems to be functioning well 95% of the time. The other 5% of the time it is squealing. Then Tuesday morning, I used my fancy hearing aid stethoscope to listen to the aid (just for practice) and I heard absolutely nothing. PANIC! Then I turned the volume up and I could hear again. Sounds logical, right? Nope! The hearing aid was programmed to override the volume switch to prevent a 2 year old from accidentally turning it up too loudly or down to softly. For some reason the program didn't take. I think the volume was up really high on the first day, which might have added to the squealing. It wasn't supposed to matter so we didn't check it at all. So, we are returning to the audiologist in two weeks for new molds and a reprogramming. Then in two more weeks, she has her next ABR.

Other than the minor problems, it has been wonderful. She loves her new "eah". After she wakes up, I show it to her and she eagerly demands "In! In! In!". I've noticed a difference already, although Josh says it is wishful thinking. I think not. She is definitely more responsive to music, and she is mimicking lots of new words and sounds. Her "doc" has evolved into "doc-dor". Her "ingle" for triangle has evolved into "ang-ang-gle." Her "ween" for swinging has evolved into "winging". Her "geeeeen" for again has evolved into "ageen". Those are just a few examples. Last night at feeding therapy, I think she repeated everything the therapist said, and I did very little translating for her. I really do think this is going to be amazing for her once we get the kinks worked out.

Speaking of feeding therapy, last night we made a decision to switch from feeding-centric therapy to overall sensory therapy occupational therapy. I am pleased with this, because I didn't feel that the OT through the state was cutting it for her. She has such a varied sensory processing problem, that I think they were limited in how they could help her. The therapist did a fine motor evaluation last night and KayTar scored an average of 28 months, and she is 27 months! She's never scored above age level on any evaluation, even by a measly month. Fine motor is her forte, so it isn't too terribly shocking, but wow, is it ever nice to hear. The therapist said in certain sections she is at a 3 year old level. Wow! She is ready to start working with scissors now. Also, she suggested we start practicing design mimicking, building things with blocks and asking KayTar to replicate it with her own. I'm excited to get her into private OT, I think it will do worlds of good for her.

On other fronts, I've had to make BubTar a summer schedule for days we are at home because he is more than happy to lie around watching television all day and we just can't have that. Today is day one of the new schedule and so far so good! It is so difficult to stay busy here in the summer because it is just too hot for outdoor time unless we are in the water. Miserable.

Yesterday he had a well-child check up and he had to get two shots. It was going to only be one because the office had been waiting on Varivax boosters for over a month, but after the pediatrician left the exam room, she came back in exclaiming, "They're here! He can get one today!" BubTar wasn't nearly as excited. He actually hid under the exam table and I had to drag him out when the nurse came in with the shots. We held him down and he screamed like she was killing him as she wiped the injection site. She said, "Wow, that must be one painful cotton ball!" Once she actually stuck him, the noise level went down considerably. We decided that cotton balls are much more painful than needles. Afterwards, I said, "You did great, buddy!" and he said, while sobbing, "I did NOT do great! I was a CRY BABY!" and continued to cry. It was so hilarious, we both started to laugh. Other than the shots, the appointment went well. He is developing perfectly. When asked to write his name, he wrote it backwards. He never writes backwards...but I think he was trying to show off for the pretty doctor. *lol*

I think that is a fair amount of updating, so I'll leave it at that.

Oh yeah, KayTar is reading more.

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I gave BubTar a list of her words, since he is actually learning to read and he didn't know a few of them! Every day wee seem to find more words she knows. It is quite the trip!

Also, we have been doing a lot of this.

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Yeah, it sounds like BubTar says "Shit!" but I assure you he didn't. I cannot for the life of me figure out what he did say, though. Any guesses? Oh and sorry for the annoying "Round-round" part. KayTar demands I say it with her. And feel free to ignore the various chit-chatting, too.

Hearing Aid!

We picked up KayTar's hearing aid today! She was very well behaved at the appointment. Of course the whole way to the Children's Hospital she repeated, "Bye bye doc. Ajur. Bye!". Ajur translates into "later" as in "See you later!". The hospital is roughly 45 minutes from our house, so she said it quite a few times. And then when we got into the exam room she said it to the audiologist, too. My favorite thing about audiologists (besides that they all are extremely kind) is that they do not wear white coats, scrubs, or stethoscopes; which means they fly under KayTar's radar. So when she didn't leave the room, KayTar didn't really mind. She only fussed when we held her still for something, like the otoscope. When she started crying, our exam room door popped open and a little girl, probably four years old came in. She looked at us and at KayTar and said "Oh, what happened?", we giggled, and then heard a mother in another exam room say "Where did she go? Oh, there you are!" and came to get her. Her concern for KayTar was very cute. She cried when the audiologist put the aid in, because she had to be still, but as soon as she turned it on, KayTar stopped crying and looked around and smiled. It was very cute.

Of course, there is a problem. We wouldn't be the Tars if their wasn't a problem, right? At the last appointment, they took crappy ear molds, so the mold on the aid doesn't fit right. It doesn't go far enough into the canal which means if it gets jarred at ALL it start squealing. The only time KayTar has messed with the aid was in the car, when it started squealing and I couldn't help her. She pulled it out herself. Other than that, she has left it alone. She seems to like it a lot, in fact, she keeps pointing to it and saying "Eah! Ike! Eah!" A better mold was made today, so in two weeks we will go pick it up and hopefully have no more problems. Until then, I am going to let her wear it and keep it turned on when I am close enough to fix a squeal, and then keep it turned off when I am not close enough to help if it starts squealing, so she can be used to having it in full time. She already seems to be hearing me a little clearer, I've noticed, and she has mimicked a few new words. She could also tell the difference between Gorilla and Umbrella, and she has always thought those were the same word! Even if it isn't working at 100% yet, it is still exciting. I can't wait until we get her new molds in!!

Insured

Last Saturday, we received a letter from KayTar's amazing insurance company. Through all of the testing, all of the claims, all of the specialists, we have never once had a problem with them. No arguing over what was covered and what wasn't. No refusal to pay. No arguments over pre-existing conditions. We have saved between ten and twenty thousand dollars in the past ten months. Sure, we pay a pretty penny for this coverage, but if you do the math, it is not even a drop in the bucket compared to what we are NOT having to pay our of pocket. A single blood test ran approximately $3,000 dollars. One test! Do you know how much we paid out of pocket? $0.00. Labs, all labs, are fully covered. No co-pay, no percentage, no stipulations on what tests are covered. It was just paid for.

Back to the letter, KayTar's insurance is being canceled. Not only KayTar's, but the entire program. In nine months, it will cease to exist. The company sited many reasons; after offering the program for six years, they haven't generated enough interest; they have the one of the highest premiums in the individual market; and so on. Those things don't matter to us, though. We don't care how many members there are, or if we have to pay higher premiums because of it. We don't care that the premiums are so high, because the quality of the coverage is invaluable. Okay, maybe not completely invaluable, if what we had paid in exceeded their coverage, then it would be a problem, but our premiums are not close to having equaled twenty thousand dollars over the past ten months. Not close at all.

And so we have nine months for find a new insurance company. Nine months is a long time, I understand that. It is the length of a human pregnancy. Ask a pregnant woman, nine months is a long time. I am thankful that they have given us nine months to birth an new insurance policy, but I am incredibly stressed about finding comparable coverage. I am worried that so many of KayTar's issues will be stamped with "pre-existing condition" and the company will refuse to pay. I am worried we won't find a company that covers our pediatrician (who I will not give up) and all of her specialists. I am worried that her therapeutic needs will not be covered. I am just worried.

The current insurance company continues to be amazing, they have sent us information on all the companies who provide individual medical coverage for children and they have even offered to provide us with an agent to help us find coverage. They have established a fund to assist families with children who can only be covered with pricey high risk pool insurance. They have sent lots of information to help us through the transition. But once we come out from under their umbrella, I am concerned that KayTar's care will be more difficult, that we will have to fight to get her proper services, and that we will be paying much more than we currently are out of pocket.

The next time I speak with our pediatrician, I'm going to request knocking out any additional tests in the next nine months, when we are sure she is adequately covered. I'll also find out what plans her office accepts and KayTar's specialists accept and cross check those with the list our provider sent to us. Once I have that list, I'll call those companies and ask them about their coverage in the areas I am most concerned about. I know we can handle this and get the best outcome possible from the situation, but I am concerned that the best possible outcome will not measure up to our current situation. I wish we weren't being forced into making a switch at all.

Conversation

During KayTar's CT scan, the nurse wanted to attempted it without sedation. She asked me to explain to her that it is just a big camera and she needs to be very still like she is sleeping. I said, "She won't understand that. She has delays." which was the quickest explanation I could give without overwhelming her with the details. On the heels of my, "She is delayed." explanation, KayTar correctly identified a circle, square, triangle, and pentagon. The pentagon had the staff very impressed, and also looking at me like I was a big fat liar for saying she had delays.

She is a very smart little girl, that can't be denied, but she doesn't understand certain things. She doesn't really understand questions, unless is it something she has really practiced. At the end of her meals we ask, "Are you all done or do you want more?" and now she can answer us. I can ask her, "Do you want milk or juice?" and she can answer me. But most other questions she doesn't fully comprehend. She also doesn't understand things that are not concrete.

She is a masterful labeler, though. She talks all the time. We even have conversations, sure they consist of her saying a word and me parroting it back and forth with her, but she is laying the foundation of conversation structure, even if it is not quite functional yet. There is so much she does understand, but there are limits to it. She is doing so much better. Questions like "What color?" or "Where does it go?" are getting easier for her. She answers instead of repeats about half the time. She practices those a lot, asking us "Acolor?" and "Ago?" It seems she has to practice questions quite a bit before understanding, when someone says "What color?" I am supposed to name the color. Or when someone says "Where does it go?" I am supposed to put the puzzle piece in. I think for most children, these concepts come easily, but for her it is a a matter or practicing the proper responses, it can take months for her to learn how to answer a question. She has the knowledge, she knows all her colors and points them out unprompted much of the time. She is great at puzzles and always knows where the pieces go, she just doesn't understand the function of the question. I think that is why she needs me to repeat her words all day long, so she has a sounding board to practice with. To illustrate my point, I jotted down a conversation we had yesterday evening.

KayTar: Sul?

Me: What?

KayTar: Sul?

Me: What?

KayTar: Sul?

Me: Show me.

KayTar: Me.

Me: SHOW me.

KayTar: Me.

Me: (goes back to what I'm doing)

KayTar: Sul! *signs puzzle*

Me: Puzzle! Okay, which one?

KayTar: One.

Me: Which puzzle? Show me.

KayTar: Me.

Me: KayTar, do you want a puzzle?

KayTar: Sul! *signs puzzle*

Me: *points to a giant stack-o-puzzles* Which puzzle?

KayTar: Sul! *signs puzzle*

Me: No, which one?

KayTar: One!

Me: No, show me which puzzle.

KayTar: Sul! *signs puzzle*

Me: KayTar, I don't know which one.

KayTar: One.

Me: Can you show me?

KayTar: Me!

Me: *sigh* How about shapes?

KayTar: Pih-shays!

Me: Shapes, okay.

KayTar: Kay!

Me: You're welcome.

KayTar: Uncom.

Welcome to our world.

Swimmy Saturday

Variety Show

BubTar has been quite the trip lately. He is growing like a weed, suddenly all knees and elbows and legs. I blinked and he sprouted. When I hold him, his feet dangle right below my knees.





This week he asked to help me with laundry and folded the hand towels on his own, not a huge deal, but his only prior chore experience is cleaning his room. It was nice working side by side with him, and he was so proud of his finished product.



We have started reading chapter books together, The Magic Treehouse series. We've been reading one chapter per night, but last night he suckered Josh and I both into reading a chapter each and he said it was "The best day ever!". Last night I picked up the next book, because we are almost at the end of the first and this morning he begged me into finishing the old one so we can start the new one tonight. The books aren't terribly exciting for me, but I love that they are opening a bigger world of literacy for him. Dr. Suess doesn't quite provide the sort of excitement a school aged lad enjoys. And I love the cuddles. :)

Wednesday we went swimming at my parents' house. They had an inflatable chair that is meant for dry land, but I tossed it in the pool and attempted to sit in it. It flipped me over mighty fast. BubTar laughed and exclaimed, "You could be on America's Funniest Home Videos, Mom!" He cracks me up.

Yesterday we attended a birthday party, and he was so shy. He is an extremely outgoing kid, friendly and social, but in large gatherings he becomes a wallflower. Actually he becomes attached to me, usually with his head buried in my chest. He won't eat or talk. He won't play or laugh. There are two times I see myself in him, as clearly as looking in a mirror; when he is being incredibly shy, and when he is miserable because we dragged him along somewhere. The hiding, the sulking, the begging to go home...all me. 100%. The stubborn resolve to make sure he doesn't allow himself to have any fun? Me, again. Once the party portion was over and he and I went out on our own, we had a blast. He was himself again. It is such a strange facet of his personality. He is such a social butterfly at home and at school, he has lots of friends, but certain situations just feel awkward for him I guess, even when he is surrounded by his same classmates from school.