Excellence

Life comes easily to some people. They seem to naturally suceed in all areas. For others, life is a seemingly endless struggle. They never get ahead, it is tremendously difficult for them to even get by. I believe most people fall in the middle some place. I think the majority of us excel in one or two areas, and struggle in a few areas as well. In many cases, the difference in the two areas is slight. Perhaps you made straight A's in English courses, but in math, you never could make more than a B if you worked your very hardest. For some people, the divide is much greater than that. Watching KayTar develop has been quite the lesson in this area.

For a while, she didn't excel at anything. She was way below average in all her developmental areas. In retrospect, I still can't understand why we didn't see it sooner. We just thought she was taking her sweet time, I guess. When we switched doctors and began evaluations, it was striking how far below the curve she fell. But as we've travel this road, many things have become apparent.

Her brain seems to work differently than most people. Learning sign language seemed to flip a switch that had been in the off position for her entire life. She has a natural propensity for signing. Her therapists "Oooh!" and "Aaah!" over how well she's picked it up. Usually once a session she uses a sign they don't know and they exclaim, "Wow KayTar! You know more sign language than I do now!" She doesn't thrive the same way using her "words", though. Speech is used solely for naming objects and people. She doesn't use it to communicate wants or needs or hold conversations. Speech is not an area she excels in. But sign language? She has picked it up miraculously.

She has fixated on letters, she can identify almost all of them now when asked to do so (when she is feeling compliant). She is signing or saying at least half of the alphabet already. She is even beginning to connect the beginning letter sounds of words to the letter they start with. We are amazed by this ability! A child who does not use speech as her main mode of communication having such a natural knowledge of its workings is surprising! BubTar is a smart cookie (as shown by his report card earlier this week showing 100% knowledge of the things they have been taught this semester), but even he has just begun to learn these things this year in PreK. But KayTar just knows them.

She struggles so greatly with her gross motor skills. Her body just won't behave in the way that comes so naturally to most children. She can't stand, walk, run, or jump. She is almost two and has been left in the toddler dust in this area. But she is a beautiful artist. She hold her pens, crayons, and markers expertly and has for a few months now. She makes beautiful swirls and lines across the page. Her pictures often resemble a swirly flower garden. Most of her peers are still "scribble-scrabbling", as BubTar calls it. She thinks out each stroke it seems, "More detail here, less over there, and perhaps a touch more color right about here." She can build amazing block towers, exceeding the norm for 5 year olds. She can successfully stack up to fourteen blocks, and might be able to stack more if her arms weren't so short.

We all have strengths and weaknesses, but most are not so obvious as KayTar's. Watching her grow into herself is such a learning experience. We have gone through stages of sadness over the things she can't do or may never do normally. We have grieved over the loss of her "normal" life. We worry about her future, about how she will function in this world that so values sameness. We worry about the areas she struggles in. But then we are surprised by her natural excellence in some areas, and we breathe a sigh of relief. Some things do come easily to her. Some things will not be a struggle. She does shine and she will continue to shine as she grows. Maybe she will never be one of the people that life comes easily to, or maybe that gap between strengths and weaknesses will close and one day life will come easily to her. Either way, one thing we have learned is that anything is possible and that anyone can shine if they are given the chance. That is something we will remember forever, no matter who our sweet KayTar grows into.

Indeterminate?

I spoke with the neurologist. He had the results for her Familial Hemiplegic Migraine evaluation. Can you guess what they were? I confess, I may have used a bit of foreshadowing with the title of the post.

She DOES have a genetic mutation on the same gene that controls the calcium channels that would make this diagnosis a slam dunk...BUT it is not a recognized mutation. The mutation she has is "indeterminate". So basically, we have one more test that pats us on the head and says "Yes, you're right. There is something wrong." but gives us little more information.

The neurologist, pediatrician, and I got a nice chuckle out of this, because at this point we expect a non-specific result. We would be good and surprised if we got something informative back. They both agree that this means we're digging in the right spot, though. She is being switched to Topamax, so for the next 2 months we will be weaning her onto the medication. The doctors are also prescribing Zofran to be given at the start of an episode to control the vomiting.

If the episodes continue once we are on the Topamax, we will go in for further testing, just to be sure there isn't a new development.

Josh is currently on the couch with his head covered by pillows with a headache of his own. I hope the medicine works before it gets to be a full blown migraine. I need a break tonight!

A picture of my sweetness from last night:

We have gotten more than our money's worth out of the Baby Papasan. Not only did she love it as an infant, it makes a lovely "sick seat" for a toddler. :)

(excuse the mullet-esque hair, its normally not that bad *lol*)

Caffeine STAT!

We were up until 3am. I am tired. So very tired. BubTar went back to school today, so we had no choice by to be up and around. KayTar is resting in her crib with a bottle (rehydration in process), and I am about to have a second cup of coffee and relax on the couch with the issue of Wondertime I just received in the mail. I just wanted to let you all know KayTar is feeling better, the episode lasted 8 hours, and that I can be found vegging out on my couch for the remainder of the day if you're looking for me. :)


I will leave you all with a quote from BubTar:

The scene: I am cleaning his tushie after he used the potty.

BubTar: Do you see my little baby?
Me: No, I don't see a baby.
BubTar: My little baby POOP. IN THE POTTY. Sometimes I make a whole family, but this time its just a baby. *baby talk voice* My little baby poop.

I almost died. Can you imagine if he said something like that to his teacher at school? Dear Lord. *lol*

It is 12:36am, do you know where your episode is?

I am wide awake with the beautiful KayTar, who is currently mid-episode. It began at around 7pm. We had come home from the grocery store and she was playing in the living room. I noticed her start blinking strangely and squinting at the lights. I turned the bright ones off, but within 5 minutes she was on the floor writhing and screaming. We administered Motrin and Daddy took her outside to try and calm her. She fell asleep on him outside and he put her in her crib a while after. She slept for a half hour or so and then woke up vomiting. She has thrown up roughly 15 times since then. It is now lime-green bile. We are trying to get her to drink, but she doesn't feel up to it. She will allow us to squirt water from her bottle into her mouth for her, though. Josh and I are taking shifts squirting her. Luckily the pain is over, she is still light-sensitive, motion-sensitive, and vomiting frequently. Her last episode was 8 hours; going by that scale we are a little over half way through.

The pediatrician said if the pain becomes unmanageable, we can take her to the ER for sedation. I think we'll make it through from home tonight. She is calling the neuologist in the morning and we are likely switching to Topamax, which has a track record with migraines and seizures, and since this seems to be a marriage of those conditions, I'm hoping it works. A plus to this change, is that they can prescribe her Tylenol with Codeine for the pain. With her current medication, they cannot, because the medication is a sedative and they can't give her two. We might need further testing, but she is unsure. We won't know until she talks to the neurologist.

I just want my baby to feel better. I want her freed from this bi-weekly curse. We are managing, but she shouldn't have to endure this.

2006: The year in photos

January:


KayTar takes a trip to the ER for RSV.



BubTar and KayTar are adorable.

February:


KayTar turns 1!



BubTar and KayTar are STILL adorable.


March:


KayTar pulls to a stand! (and there was GREAT rejoicing!)



BubTar begins a wildly successful career as a model.

April:


BubTar turns 4! (while continuing his wildly successful modeling career)



BubTar and KayTar are adorable while vegging out.

May:


KayTar has her first known episode.



BubTar and KayTar are adorable AGAIN.


June:


KayTar shockingly learns to climb!



BubTar is chosen for the role of James Bond in 007:Preschool Royale



KayTar sees the new pediatrician for the first time.



BubTar's modeling career goes PUNK ROCK.



BubTar and KayTar cuddle on the couch, adorably!

July:


KayTar rides a horse.



BubTar gets the role of a very young William Turner for an upcoming Pirate's prequel.



Still adorable.

August:


Hospitalization for episode...EEG time!



BubTar starts school!



You guessed it, ADORABLE!

September:


KayTar's first neurologist appointment.



BubTar takes a break from modeling and acting while starting PreK.

October:


KayTar gets blood drawn.



KayTar gets blood drawn again.



KayTar has MRI.



BubTar takes his first plane ride.

November:


KayTar becomes a rogue dental hygenist.



BubTar explores comedic modeling.

December:


KayTar gets her walker!



BubTar gets a trampoline and Gigaball!



I realized that BubTar and KayTar have the same smile, and the year ends as adorably as it began.

My Sweet

Oh KayTar, where should I begin? I could begin at the beginning with the moment I saw you, but that seems more fitting for your birthday post in 2 months. I could begin at the first hint of things not being quite right, but nobody really knows when that was. I suppose I'll begin at the beginning of this journey. The day we first knowingly embarked on this journey.

I was so worried about you. You had been ill for almost the entirety of your first year. The pediatrician always brushed it off and said "respiratory virus". I don't think I worked one full week since you were born, you had to stay home sick almost weekly. It seemed the stuff of normal childhood illness, just much more frequent. The latest things we had noticed was your awful constipation. The pediatrician always said "Just give her a glycerin suppository." He didn't understand that you cried and bled each time you went to the restroom. On our own, your dad and I did research on natural ways to help constipation. We changed your diet completely. Anything on the "firm" side of the scale was tossed out and replaced with a "soft" food. We supplemented with flax oil. We added fiber to your diet. We changed everything we could and still it did no good. The doctor wouldn't listen. I knew your weight was low. I knew you weren't eating enough for your age. I still worried about that unexplained episode you had last May. I watched you "play" and knew something wasn't right. The pediatrician smiled at appointment after appointment and said you were fine. "Not to worry, Mom." He saw you almost weekly for your entire life, and he always said things were just fine. I couldn't worry anymore. I couldn't sit by and let you slip through my fingers. I couldn't ignore what I saw any longer. So we made an appointment with a new pediatrician.

I typed up a list of all my concerns. I documented your diet for 2 weeks in anticipation of the appointment. I typed up your milestones and brought a copy with me. I was prepared to fight for you. Prepared to make someone listen. Dr. H came in and looked at you and immediately asked me about each concern on my list, before I even pulled it out of the diaper bag.

"How is her development? I don't usually come into an exam room with a 17 month old and see her happily playing on her back with a rattle. Did your pediatrician have her evaluated?"
"Her weight seems low. According to the chart she is below the 5 percentile for her age group. How much does she eat? Was the pediatrician treating this? She is still on baby food?"
I did have to mention the constipation, but it isn't obvious at first glance. She put you on PediaSure and Miralax, and set up a follow up appointment to determine a course of action regarding the delays and further research the previous episode, she didn't want it ignored.
You had lost 1 set of words at that point. You could not eat anything except stage 2 baby foods. You weren't crawling with your belly off the floor. You rarely sat upright. You didn't play with toys. You could not communicate with us. You didn't seem to understand what we were saying to you. You were so small.

I was looking through pictures today, and I found one from the day of that first appointment. We were filling your prescription at the grocery store and I gave you a chocolate chip cookie. You couldn't eat it of course, but you smeared it all over yourself and I let you play with it a bit in your highchair when we got home. I snapped a picture because you looked like such a big girl, covered in cookie. You looked almost like a child your own age.



Until I looked back at this picture, I didn't realize how skinny you were. I couldn't remember how tiny you were. Looking at this photograph today, I saw exactly how far you had come in these 4 months.
Although you lost 3 different sets of words before they became sticky, you now know over 45 words in sign language, and can name at least 20 objects. You know most of the alphabet. You are beginning to connect words with their initial letter sound. (Bob! B!)You can eat chicken nuggets, cookies, crackers, toast, waffles, french fries, and stage 3 baby foods. You are not only crawling with your belly off the floor, you are cruising and taking steps between people. You can stand on your own for up to 15 seconds. You love to play toys; especially instruments, art supplies, and puzzles. You communicate beautifully. All of your needs and most of your wants are conveyed with a mixture of sign language and spoken sounds or words. We ask you things and you answer with a resounding "Yeah!" or vigorously shake your head "No." and open and close your little finger and thumb to reinforce the sentiment, sometimes you use both hands to sign "No." to us. You have grown so much. You were barely in 12 months clothes 4 months ago at that appointment. Yesterday and today I had to make emergency shopping trips to buy you new clothes....in 24 months and 2T. You have grown into and out of 2 sizes in 4 months. You look healthy. You are beautiful. You have graduated from the PediaSure club at a healthy 24 pounds. You were barely 19 pounds at that intial appointment. You have grown from 31 inches to 34 inches tall.








You are beautiful and bright and healthy. I have just been through the most difficult months of my life, and although they are not over, looking back at where we started and comparing it to where we are today, I can't contain the joy. You are nothing short of a miracle. Some people search their entire lives to see a miracle of God, and we have one sleeping in the next room. My sweet, KayTar, we could not be more thankful to have you.

All my love,
Mommy

My favorite day of the year

I love the day after Christmas. Today especially, because the kids had such a wonderful Christmas. They both have so many new things that I haven't heard any whining and no one has said "I'm so BORING, Mom." like the other 364 days of the year. This year we banned playsets, stuffed animals, action figures, and the like. The result? Things they both love and actually use on a regular basis. Christmas is so frantic and busy; rushing from here to there, trying to see everyone, exchange gifts, eat, and so on. Today we just stay in our jammies and enjoy our new things. We didn't even think about naptime today because both the kids were so well behaved...we looked at the clock and realized it was 2 and promptly put them to bed. It has just been such an easy going day. After nap, we are going to play outside on the trampoline, with the Gigaball and sandbox. Then we might take KayTar for a spin on the trike and let BubTar race his remote control Mater up and down the block for a bit. But while they are sleeping, Josh and I will be enjoying season 6 of CSI which we received from his Grandma yesterday. :)

Happy December 26th, the best day of the year!

Merry Christmas!

We woke up at 5 this morning. Yeah...that said 5. We aren't morning people. Nope, nope, nope. BubTar couldn't sleep any longer so we caved. KayTar slept until 7-ish which is VERY early for her, too. They had a great morning. Santa left a trike and a sandbox for KayTar, and a desk for BubTar with the first clue in a treasure hunt for a second gift. He had a blast following the hints. And it ended with an exclamation of "IT'S A TRAM-FO-WEEN!", otherwise known as a trampoline. We had just finished up opening gifts when KayTar awoke. She saw her trike and that was enough for her. She sat on it and had her brother fetch and open her new gifts, and she inspected them from her tricycle throne. :) She kept signing "Bike!" and smiling so big. We lured her off of the bike to try out her new rocking armchair, which she also loved. From there she checked out her Laugh N Learn Chair and finally we opened the sandbox filled with rice and beans. It was SO messy, but they both had a blast. From now on, the sandbox will be outdoors, not in the living room. ;)I think they both got everything they could have wanted and then a bit more. Of course, the only thing BubTar asked Santa for was "Orange playdoh...you know you can buy it at Walmart, Santa?" so he was easy to please. KayTar is in love with her trike and everything else is just gravy. Even though we woke at an ungodly hour, it was a great morning and everyone enjoyed it.

I hope you all had similarly wonderful mornings and have a day filled with family and fun. Merry Christmas!

Smiling Sunday: Merry Christmas!

Here's a surprise gift we received from our dear KayTar, and I thought I'd share it. It is sideways, but you'll get the idea.

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Yeah, she knows her letters. Who knew? We sure didn't.

Merry Christmas wishes and much love to you all!

Failings

Last Thursday, I sat in line to drop BubTar off at Pre-K for 30 minutes and no one came to help the kids out of the cars. BubTar is having a panic attack in the backseat.
"Momma! We OVERSLEPT. We MISSED school. There IS no school! We're late!! Momma!!!!"
I assured him we were NOT late and we did NOT oversleep, and confirmed this by gesturing to all the cars in line with us. "See all the cars? They wouldn't be here if we were late, BubTar. We're fine. It's okay."
I got tired of waiting and called the school office.
"Hello. My son is in the afternoon Pre-K class, and I'm in the drop off line, but no one is on duty. Am I supposed to walk him to class today?"
"Uhh ma’am today is an early dismissal day."
"So what line am I in?"
"It must be the pick up line."
"Oh my, I'm so sorry to bother you, goodbye."
It turns out BubTar was right after all. Early dismissal days are from 10:30-12:15. Normal days are from 11:45-2:45. We totally missed school. This was especially a problem, because I am a procrastinator. I was sending money for candy grams AND our portion of the teacher's gift that day. I was in sweats and was not going into the office dressed that way, especially after being the idiot who sat in the pick up line for half an hour.
Friday, Josh had a vacation day and he volunteered to take BubTar to school. It was another early dismissal day, which I had written into my calendar as being from 10:00-12:15. So we rushed around to get him ready for school (because we had slept in) and they rushed out the door.

Josh called 15 minutes later:
"Hon, what time did you say school started?"
"10 o'clock."
"Well, his teacher won't let us in. She says it doesn't start until 10:30."
"Oh crap, can I not get ANYTHING right?"
"I'll just hang out on the bench with him until class time, okay?"
"Yeah, that sounds fine. I'm sorry."
"No big deal, talk to you later."

Five minutes later the phone rings:
"Hon, what is the money for?"
"Candy grams and the teacher's gift."
"They won't accept it. It's too late. The deadline was yesterday."
"OMG, what is wrong with me? I'm sorry...AGAIN."
"It's fine...we're still waiting for class to begin."
"Okay...bye."

Five minutes later, the phone rings:
"What time is the party?"
"I wrote down 11:30-12, but you know how reliable I am, so I'd ask if I were you."
"Okay, I'll call you after I talk to the teacher."

At this point, I cry. I am ruining everything. It was the worst week last week, I was emotionally drained and had been preoccupied fighting for KayTar in a way I never should have had to. She had been implicated as the reason a family member had left their job. The school had published this information in a school-wide letter. They made my child seem like a burden, which she most certainly is not, and I had to fight for her. They sent out our private information. It was a long week. I was out of juice.

The phone rings again.
"You were right; the party is at 11:30. Get ready and have KayTar ready and I'll come back home and we'll all go together."
"I'm not going."
"What?"
"I screwed everything up...we didn't even chip in for the gifts. I can't go."
"They accepted the money; the room mom said it was fine. Everything is fine now."
"But I still messed it all up...I can't go."
"I'm coming home now. We are going. It's FINE. I promise."

So I resign myself to go, but feel like a failure the entire time.

*******************************************************

On Monday, KayTar had an episode that lasted for 8 hours. The pain was much shorter lived, only about 2.5 hours, which isn't unheard of. We kept expecting her to come out of it and we opted not to bother the doctor after hours, because there is nothing they can do to help her. We are out of options and tests. The worst was over in any case.

I emailed the pediatrician* about it yesterday and asked if we did the right thing. She replied saying "I don't know if you did the right thing by not calling. Honestly I would be scared myself if I had a child in pain that long." This made me feel awful. It made me feel like I had failed KayTar and wasn't concerned for her well-being. I don't think she intended it that way. I think it was more about letting me know that even she would be afraid at that point and therefore did not mind my calls. But after the previous week, it just felt like one more mark in the "Losses" column of my life. It felt like "Why aren't you more concerned about your child?"

It IS terrifying. But we have been told they are out of tests that need to be run. We have been told that there is nothing to help an episode once it begins only preventative measures and if they fail, there is nothing else to do but wait. So we waited. I held her on my chest as she writhed and cried. I cradled her and made "Shhh." sounds just like I did when she was a baby. I did everything I could to help her through. If these are going to be a part of our daily lives (or bi-weekly lives) then at some point we have to come to terms with them. I feel badly about calling the pediatrician when I know she cannot help. It seems a pointless disruption of someone else's life. We didn't not call because we are careless, we didn't call because we didn't think it could make a difference. The pain was not long considering our history, but the episode itself was very long. If the pain had continued longer than it had, I would have called regardless, but she was no longer in pain.

We exchanged emails, and every email after that I felt like I was losing more ground. She asked why I didn't cancel the appointment with Dr.Old Neuro. I did cancel it, through the hospital's automated system, but they have me listed as a no-show. She asked if I had a visit scheduled with Dr. New Neuro, because he needs to see KayTar ASAP, and I hadn't. He told me he didn't need to see her for a f/u until after the March MRI. I called to schedule one yesterday and the earliest appointment is July 6th. Not exactly ASAP. I emailed her and told her and the neurologist is going to try and bump us up much sooner than that.

The whole thing just seemed to confirm I am failing a lot more than I am succeeding at the moment. But the things I am failing at seem out of my control. I didn't KNOW Thursday was early dismissal. I didn't KNOW school started at 10:30 on Friday. I should have, but I didn't. That in itself is a failing. I didn't KNOW I should have called on Monday. I didn't KNOW that is what she wanted. I didn't KNOW that the hospital listed me as a no-show to an appointment I had canceled. I didn't KNOW I needed to see the neurologist before March. I didn't KNOW it would take 8 months to get an appointment with him. He didn't have me set up a f/u visit the last time I saw him. I feel like everything is slipping through my fingers before I even know there is anything in my hands at all. How do you catch something if you don't know it is falling?




*I love our pediatrician, and she has been NOTHING but wonderful and helpful to us. Rationally, I don't believe she was scolding me for anything. She was just reinforcing her total availability to us, not questioning my concern for KayTar. It was my predisposition to the sentiment that caused me to view it this way. She has been our savior at every turn.

Not all surprises are GOOD

I promised to post, and post I shall. My dear KayTar is having an episode, as I type. Don't worry, I haven't abandoned her in her moment of need...the worst is over. She was in pain from about 12:45-3:15, but she keeps collapsing so we have put her safely in her crib where it is nicely padded.

My parents live about five minutes from our home. In the time it took me to drive from their house to ours, she was suddenly full throttling her way into an episode. She was fine when we left their house. She cried and writhed while laying on my chest for the duration of the pain. Around 3, she opened her eyes (without them rolling back into her head) and attempted to sit up. The first time she sat up, I thought she was out of it, but she soon collapsed and began to cry again. At about 3:15, the crying stopped and she climbed off of me and the couch onto the floor. Then I was sure it was over, and then she collapsed. And so on and so forth until I realized the best place for her is the crib, because while she is lucid, she is also continually collapsing and would hurt herself any place else. Thankfully, she is no longer in pain, and her awareness level is almost at baseline. We've passed the 5 hour mark at this point, which makes it our longest episode to date.

Josh came home to report he has had a nagging headache all day. This is significant because I think he has had a nagging headache every time KayTar has had an episode. We are totally unsure about the reason for the correlation, because most days are like today and Josh is at work and KayTar is at home when they happen. Is it weather related? Allergen related? Is it time related? KayTar is still clipping along at 2 week intervals, which means Josh also gets a headache every 2 weeks. He also experiences true migraines, but those don't coincide with KayTar's episodes. I am so intrigued to get the results from KayTar's Hemiplegic Familial Migraine evaluation. Out of the many tests that have come back negative, I almost expect this one to be positive, because of the correlation between Josh and KayTar's conditions. It seems too related to be a coincidence, but we'll see.

This isn't the post I intended to write today. I intended to write about the awful school parent I was last week for BubTar. Or about the fact that the bathroom was repainted this weekend, because while Josh was using it he decided that the paint situation was an emergency that necessitated an immediate solution. Or about the horror that was babysitting my sister's children this morning. This post could have been about many things, but I didn't think it would be about an episode. The episode came as a surprise, as it always does; and when it comes, it wipes the rest of the world away. It is just us and our sweet KayTar, and nothing in the world mattters more than helping her through it all.

Edited to add:
Spoke too soon. She asked for dinner, I obliged, she vomited. She is crying on and off again. I think perhaps the Motrin I gave her early on controlled the pain element, but has since worn off. We have to wait for her tummy to settle again and I can give her another dose. Right now she is in the darkness of her room watching Blue's Clues from the crib, it seems to be appeasing her for the time being. Poor sweet girl.

Edited again to add:
Grand total: 8 hours.

Smiling Sunday

Sorry the actual posting has been lacking as of late, life has been hectic and I can't seem to think straight. I promise to make an actual post on Monday. :)

Since Sunday is the official start of the week, I thought I'd like to start this week out with a smile and share it with all of you.

Here was our big smiling moment from last week:

Photo and video editing at onetruemedia.com

See you all tomorrow, I promise I'll actually have something to say. ;)

Look Who's Walk(er)ing now!

That's right! The KayTar is!

We finally got her walker today!

At first she just wanted to sit in it **

So exciting! :)

My kiddo is adorable

In a distraction from the rage that I am currently consumed by, I present to you, KayTar the GreaT(ar).
She signs B, L, D, and E. She says B (which is incredibly hilarious for some reason) and D, even though it sounds more like "DAY!".

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And since you asked, why YES she was eating chicken nuggets for dinner. And she has been eating stage 3's for a week without a single gag, AND she is feeding herself cinnamon toast waffles for breakfast each day. Amazing!

PIG!

Yesterday was our developmental psychologist appointment. It was awful. It was awful in ways I couldn't even imagine. Wow.

The night before, Josh took a Benadryl and an Excedrin migraine to ward off allergy problems that were starting to give him a headache (he suffers from migraines). This combination gave him a buzz and the munchies, so being the wonderful wife I am, I stayed up with him and watched TV until he got sleepy around 2am.

I had to wake up at 6:30am to get to the appointment on time, so I was quite sleepy. Lack of sleep is my kryptonite, so I was already losing the battle upon waking. KayTar had to wake up at 7:15, and she normally wakes up between 9:30 and 10am, so she wasn't quite herself either. We were out of milk here, so I took an empty bottle with me, planning on buying milk from the hospital cafeteria to fill her bottle when we arrived. Well, the traffic was AWFUL. It was miserably foggy, and it was also Monday morning rush hour. We were supposed to arrive between 8 and 8:15, but we arrived at 8:37, so there was no time to grab milk in the cafeteria. We got in the evaluation room and KayTar was instantly cranky. She was crying and whining for no reason. She is so easy going and she never fusses, unless it is bedtime or she needs to be alone in her crib for a while. This was HARDCORE fussing. When she was an infant, we couldn't go anywhere with her, because she would cry the entire time; I had forgotten about that until yesterday and she was suddenly that infant again. Even her blankey, which is her "defense mechanism" couldn't help. She refused to do things she normally enjoys. The only times she was quiet was when she was working a puzzle, stacking the blocks (which wasn't what she was supposed to be doing with them), and when she crawled away from us, into the corner, turned her back to us and talked to herself. When she came back, she was instantly fussy again.

She does so well for her ECI evaluations, she always exceeds what I think she is capable of, but those are done here at her home in her territory. They are relaxed and kind. The therapists make an effort to get to know her before asking anything of her. This was not that sort of experience. When we arrived in the room, the psychologist immediately started pulling out toys and "drilling" her. First she handed her a pretty bracelet, then took it away (making KayTar cry) and hid it under a washcloth. Of course, KayTar found it, but as soon as she did, the psychologist took it away from her again. Then, a ring on a strong was dangled in front of her to see if she would grab it and "reel it in". Then it was immediately put away. Then she was given blocks, asked to put them in a cup. KayTar made an impressive stack of ten 1-inch cubed without toppling it, but she refused to put them in a cup. Then she was handed cups, spoons, and a baby doll. She stacked the cups and put the spoons inside the cups. She held the baby for a moment before unstacking/restacking the cups. Then they were taken away. She did a puzzle, it was immediately put away. The psychologist attempted to read a story to KayTar. KayTar was enraged that she could not turn the pages at her leisure. Right after this, she pulled out another book and asked KayTar to point to the dog. KayTar was enraged that 1. the other book was gone, and 2. she was not allowed to flip through this book on her own BEFORE being asked to identify things. She loves to point to pictures in her books, but she wouldn't do it yesterday. She just cried and cried. It went on and on like this. The toys were brought out, commands were given, they were or were not followed, and the toys were put away. Every time the blocks emerged, she calmed down and stacked them; but those were never the instructions. The first block round, she was supposed to put them in a cup; the second round she was supposed to copy the psychologist and build a "choo-choo" with them; the final time she was supposed to put them into a box. She stacked them. She was upset every time they were taken away. She exceled at the puzzles, as always. She was upset every time they were taken away. She wouldn't play ball with me in the hallway, although she was happy to be out of the exam room. She put the pennies in the bank like a champ, she LOVES this and does it frequently with her Aunt. She was upset that once she filled the bank, the psychologist wouldn't pour them out again.

While I was there, I wondered "Why is she being so awful? Is she really this sleepy?" and the psychologist kept asking "Is she always this fussy?" But in retrospect, this was exactly the kind of environment that upsets her. She loves to be in control. She loves to take her time, and do things over and over. Her therapy sessions go so well, because she is allowed to spend as much or as little time on a skill, and she can switch from one task to another as she wishes. She dislikes new people, unless the attempt to connect and let her forge the connections. She is social and loving, as long as you let her "make the first move". She didn't know this lady. She only knew that she gave her toys, made demands, and took the toys away. That isn't the sort of behavior that fosters trust and cooperation. So in retrospect, I think maybe she was more herself than I orginally thought, because it is possible that the environment brought out the "worst" in her so to speak. It was not an agreeable arrangement for her temperment.

After this wonderful session, I had to sit in the room with KayTar while I filled out a 6 page questionnaire about her. She fussed and refused to play. I finally put her in her stroller next to me with a biter biscuit and bought myself a bit of quiet. She started saying "Ga!" over and over, which is how she says "pig". She LOVES the word pig and it gives her the giggles every time. So while filling out the questionnaire, so had to turn every 30 seconds and exclaim "PIG!" much to her delight. PIG! Is what got us through. The psychologist did make a positive comment about this, "I see she is using language to get your attention, very good." I was very distracted, so I hope I answered the questionnaire accurately.

Josh and I are worried that based on her behavior yesterday, the psychologist is likely to come back and say autism, when we STRONGLY disagree. I have researched my little rear end off, and autism has never been a fit for her. Even if she shares sone tendencies, her overall behavior says otherwise. She is loving and friendly and quick to make friends, as long as people respect her boundaries and allow her to initiate contact. She is comfortable enough with her therapist that by the end of the first session, she usually ends up in their laps cuddling. There are other reasons we feel it isn't a fit, but the social aspect is a large one. Autism is not a bad thing, definitely not the worst we've been faced with throughout this ordeal, but we do not want her wrongly labeled because of a bad day. We are afraid the psychologist might latch on to the obvious tendencies and not go any deeper.

Also, if your child has been through one of these developmental psychological work-ups, please let me know if you had a similar experience....or if your experience was different than ours. I wonder if they are structured this way to bring out the "worst" in a child? I'm very confused about the whole thing. Are they meant to be frustrating? We were there from 8:40-11:15, which is a long time for a small tot, especially at that pace. I'd appreciate insight on this one, I find I'm a bit lacking because it is a first for us. She has always been a shiny, wonderful version of herself at her evaluations, always exceeding expectations I had. This time was just so strikingly different, I'm not sure what to make of it all.