F is for Facial Expressions

This time two weeks ago, you could find us lounging on the balcony of our rented condominium at the beach.

--->This is the facial expression we were likely wearing. --->

 I toyed with the post title of 'F is for Fun', or 'F is for Family' to represent the week we spent there. It was a good time! Bally got a few days with Grandpa, and a few days with Uncle Bob who he seldom spends much time with.

Fast forward a week. We return to our normal lives. I contemplate 'F is for Fahrenheit' to reflect the 100 degree temperatures. Work. Doctor appointments.

<---  We now look a little like this. <---

It was really hard for Bally to adjust to being back in his old room, but he liked having his regular cartoons back, Grandpa's music videos, and he liked being able to re-demolish his bedroom by smashing all of his toys with a plastic hammer. His sister doesn't care, she just wants to make sure everyone knows that she really wants a swing set, and a new big-girl bike. And a pool. And a new house. And in our new house we'll have a puppy. We're bored.



And then? It happened. The 2012 end of the world that we keep hearing about.
-blink-
"OH NO! It's HOT!"
"I'm SCAAARED of the DAAARK!"
No tv. No a/c. No water. No cold drinks. Bally's world was over. 
This happened Friday night at about 11pm, and the electricity just returned a little less than 2 hours ago.

---> This was our face for the past 2 days. --->

We lost everything in our fridge and freezer, and have spent 2 days wandering around outside looking for shade.

Stop. Rewind.

I feel like Bally made a lot of progress while we were on vacation. He spent a lot less time watching tv, and a lot more time being forced to follow rules. Two of the main rules were "Get OUT of the kitchen!" and "Get OUT of the bathroom!" The entire city is largely family unfriendly, and using the stroller was often not an option. Luckily, we foresaw the need for one of these bad boys:

We tried something similar 2 years ago, and every time got the same reaction. Stop, drop, and scream. But he did much better this year! Yes, I looked like a crazy person walking a small child down the boardwalk on a leash, but that's okay. I'm sure you've all heard about the Miami face-eating incident. Unless you want a repeat attack, allow me to leash and muzzle my toddler. In all seriousness, this thing is awesome, and Bally was pretty well leash-trained by the second day. There were random bouts of cooperation in which I didn't need to hold his hand to keep him walking , and SOMETIMES he even walked in the same direction as me!

Bally also started using a lot more words, and developed a lot more attitude. He decided that he's now afraid of moving water, moving rides, moving elevators, and generally all things that move without his consent. He decided that his drink must always be put on a table or windowsill when he's done with it, and that Caillou is a show that the entire family must sit down and watch together. He learned how to build sandcastles, and he attempted murder on a man's foot in the elevator.         "...a MAAN!!" *stomps man's foot*

Fast forward. 

After we were home and settled for a few days, Bally had an appointment with his regular pediatrician for a few more vaccines and a little catch-up on how his other consults have gone. This was really nothing new. We were given a referral to see an ophthalmologist at Children's, for a "just because" eye exam, and discussed where we go from here. His doctor asked if I'm "okay" with the diagnosis of autism. The question weirded me out a little, and I felt unable to respond any other way than "..yea. I'm good." I mean, Bally's been our BFF since he was born; this isn't something that snuck up on us. We know babies aren't supposed to sound like roosters, and that generally that say Mama before they say APPLE BABY CAT DOG ELEPHANT. I can't imagine being upset by anything a doctor tells me at this point. I mean, I'll get upset when his messy diaper is smeared all over the walls again, or when he's standing in the corner giving death stares and threatening the life of his Gramma again. 

And speaking of Gramma's safety, I think it would have been compromised if the power had not returned tonight. Bally doesn't quite grasp the idea of unavoidable circumstances, and has spent the last two days wondering why we won't turn the heat down, and why we won't turn his TV on, and why we spent from 7am to 10pm standing around in the front yard. Whatever the reason, he was pretty sure it all boiled down to Gramma, and he was reaching his breaking point with her.

Now we're (almost) cool, we have our nightlight back, we've taken our melatonin, read our bedtime stories, and it's time to crash. 

Goodnight cruel, 100 degree world! 

Tomorrow will be a better day!

E is for Ears

Today we had an appointment with the audiology department of CNMC. I wasn't quite sure what to expect; the website briefly outlines the process for a baseline hearing test, and mentions that for severely uncooperative children, sedation is an option. I was pretty confidant going into this that Bally was going to have to be sedated.

We didn't have to wait long (which means we were all still in good moods) and were quickly ushered into a tiny little box of a room with heavy sound insulation, little light, and a giant mirrored window on one wall. This prompted dancing. /dancebreak.

Okay, now that we got that out of our system, we continue. After a few questions, the first test began. We were to sit in a chair facing the big "mirror", and the audiologist went into the room behind the mirror and began the test. It took about 5 minutes and consisted of speakers on opposite sides of the room flaring up at different volumes. Then a general rinse-and-repeat that involved headphones. Bally passed this test with flying colors (and flailing limbs).

We were then moved into the second room and this is where Bally started to decide that he wasn't appreciating this much at all. A little earbud was placed inside each ear to take a picture of his ear drum. Well, Bally doesn't like people being in his ears. They're HIS ears. Get your own. Anyway, we passed this one too. No blockages, no infection.

The third and final test... well, it really just didn't happen. In a perfect world, the well-behaved, fully-cooperative child sits silently with an earbud first in one ear, then in the other, and the earbud makes a faint noise to gauge the movement of the tiny hairs on the inner ear canal. Lol what? Sit silently? With something in "MA EARR, MA EARRRRR"? Yea, pretty much. We tried blowing bubbles, we tried playing his favorite music video, a book, a teddy bear, sheer force with his legs squished between my knees and his arms crossed and strapped to his chest-- nothing worked.
"HELP! HEEEELP!!"
"WHHYYYYYYYYYY????"
"I can't DOOO ITTTTT!!"
"WHY WHY WHYYYYYYYYY?????"
"WHERE. IS. GRANDPAAAAA."
.....

So after about 20 minutes of this, the audiologist managed to get a slight healthy reading from his left ear, and absolutely nothing from his right ear. But at this point she probably had bruises covering at least 40% of her right thigh, and Bally may or may not have damaged the wiring to the earbud-- he got smart and started winding the wire around his shoe by rotating his ankle, and then giving a sharp kick to pull the bud from his ear. So bad. After all this, she said that she's confidant saying that his speech and language delays are NOT because of a hearing problem, but that she will not claim that his hearing is 100% because he is unable to be tested right now. We're to return for retesting after he's been in school or therapy with Child Find for 3 months; she seems to think he'll be more cooperative then. Ha! He'll just be that much bigger and stronger. >:]

I don't have any especially interesting photos this week, but that's okay, because I'll be overloading on them next week. We're off to the beach for 8 days! I've been putting off scheduling any new appointments, or any thinking about doctors and schooling in general.. which means that once I get back home, we're going to be pretty flooded with things to get done before school starts in the fall.

But that's okay! Because we're going on vacation! Bally respectfully requests that you all STAY IN LINE until his return! He'll be performing a thorough exam, so don't dare get sloppy.

D is for DANCE!

C is for CNMC

Yesterday we had our first appointment at the Children's National Medical Center, which is a place we'll be visiting a number of times over the next few months. The first step as recommended by our pediatrician is to "rule out" any other potential causes of Bally's developmental delays and behavioral issues, and we started with our referral to the Genetics department at CNMC.

Playing doctor!

I have to say that they left me with a great first impression. All of the staff were really helpful, and great with both Bally and his sister, even though she wasn't there as a patient. She loved it too. All of the waiting rooms and lobbies have wall-mounted sorting and matching games, and all of those neat super-expensive game tables. I've never been anywhere so incredibly kid-friendly. The wallpaper was cute. The gowns were cute. Even the toilets were cute.

Bally, however, was unimpressed with the place; he pretty much capped out his fun-quota on the ride there. New roads, new intersections to scream "go left! go left!", and the added bonus that it was raining and we let him have the window cracked so that the rain splashed in his face. He was hyped up and fully uncooperative upon arrival. They handled him pretty well though! All in all, he busted through one tape measure before they were able to get his head measurements, he had to have his blood pressure taken several times before the machine stopped reporting "Err", and his height/weight measurements were mostly estimates of what he might be in a perfect world where unicorns exist, Mocha Frappes are slimming, and Bally stands still against the equipment without 2 or 3 nurses hanging tightly onto his appendages.

Anyway, the consultation went fine. They simply asked us a bunch of family history questions and then the doctor played with Bally for a bit while she got an idea of how he is physically and developmentally. She seemed to have high hopes for him, and said that she won't be surprised if the Genetics testing comes back clear. We have to wait for the insurance company to clear us for the testing, return to have a sample taken (blood draw I assume), and wait another month for the results. Apparently only 15% of autistic children have results that show any conditions directly related to the autism, which is then labeled as the "cause" of the autism. We're likely to be with the 85% for whom testing cannot determine the cause.

Aside from our return visit for blood work, and any follow-up after results are in, we'll be heading back to CNMC next month for a baseline hearing test in the Audiology department. That should be a fun one. I'm curious how well he's going to do; we know he can HEAR, he just doesn't LISTEN. I half expect them to have to place electrodes all over him to monitor brain waves in response to auditory stimuli.

Well, it's after 7, and we're grumpy. We'll leave you with some entertainment before we go.
Goodnight world!

B is for Breakfast

Today we decided to march (or sprint wildly, flailing arms) bravely into the unknown world of restaurant (or, McDonalds) dining with Bally. I was pleasantly surprised! While we had to play a substantial amount of Pass-The-Toddler to get through the line, ordering, and payment process, it was smooth sailing from there. He climbed right into that high chair, pulled himself up to the table, unwrapped his hash browns and began to converse politely with us in whatever language it is that he speaks right now. I like to think he was commenting on the weather, or maybe on how rude it was that the older gentleman alone at the table across from us was screaming and cursing at his plate of food. All-in-all, Bally managed to eat two entire hash browns before standing up in his high chair and barking like a dog. It was a proud moment.

At home, there are only a few things for which Bally will sit still for the entire duration. Any time I need a quick babysitter, my go-to activity for him is to launch up Wordpad on Gramma's computer and sit him in front of it.  Unless I hear seriously intense keyboard-smashing or phrases like "I can't DO ITTTTT!!" then I know things are probably okay. Here are some things we've walked in on after leaving Bally alone at the computer for a few minutes. The photo to the right is a good example of how I imagine it looks inside Bally's brain. On the left? We don't want to talk about it.


We've started thinking about and planning for school this year. Bally's big sister just turned 5 two days ago, and she has her kindergarten orientation next week. She'll get to meet her teachers, counselors, and climb aboard a school bus to look around. Unfortunately, Bally won't be able to attend this school for his first two years, and he'll have to stay with Gramma during the orientation. I don't think the teachers and other parents would appreciate a screamy distraction for the already nervous kinders-to-be. I have to wonder if the preschool special education program will offer us a chance to meet the other kids before Bally starts in the fall. I don't look forward to the look on his face (and the bruise on the aide's face) when the bus pulls up for the first time and he realizes I'm not riding it with him.

We have at least one doctor's appointment per week for the next few weeks. Hopefully we'll start to get an idea of where we go from here, and how many hours per week Bally will be in therapy. I really hope everything will be offered through the school system, so we can limit our running around.

All around, we survived another week, and mostly due to the fact that we had birthday cake. Bally LOVES cake. As Bally would say, We're HAPPYY!!!

A is for Autism

Hello, and welcome to our wonderful world, where everything can be explained by analyzing the alphabet, lining things up, stacking, sorting, and last but not least: dancing.

My son, who we call "Bally", is 3 years old and has been diagnosed with autism spectrum disorder for nearly a week. We're just beginning an uphill climb, struggling our way through tests, evaluations, interviews, referrals, and the school system. I'll be documenting our daily life, sharing all of the cute, amazing, sometimes sad, almost always disgusting, things that Bally does as he shares with us his unique view of the world.