I is for Icicles, iPads, and Inferior Planets.

Aside from the never-ending winter winds we've been experiencing, things have been moving pretty quickly over here. We're preparing to make (another!) move to a new home, the typical school year is halfway over, and Bally's acquiring new words and skills faster than we can identify where they're coming from. I still don't have much to update on as far as his medical evaluations and treatments go; I've still been treated like a ping-pong ball as everyone I contact tells me that I need to talk to someone else first. But I did think that I'm long overdue in updating on what Bally's up to these days!

A fair amount of his progress may be because of his new iPad, or so I like to think, as you all know what kind of price tag those things carry. He's become a master of side scrolling games, Fruit Ninja, and taking pictures of himself to create digital flip books. On the more educational side, he's doing a lot of simple addition and subtraction and has learned to spell more words than I would have wished for.. or I at least wish that the department store in the mall would stop hanging STOP! signs above their sale tables. "NOO! MOOMM!!! WAIT! STOOOOPPPP!!!"

His vocabulary and social skills have come a long way, too. He knows to yell for me when shows come on TV that he doesn't like. He tells me when he's thirsty, and tells me he has a tummy ache if he's hungry. He'll come smash the side of his head into my face if I ask for a kiss. He plays madly disorganized versions of tag and hide-and-go-seek with his sister. And if I let him walk alone in a store, 2 times out of 100, he might answer to my screams to get back over here right now. I usually only try this one when the store is completely empty, otherwise he'd probably end up running off and bringing me back some lady's purse.

For the moment, dancing and ABCs are a thing of the past. He spent about a week on the order of the colors of the rainbow, and taught me all about that, but it didn't stay in style for long. The new hip thing is the solar system. I could go on for hours about this one, specifically about how we're not entirely sure how he even learned the order of the planets from the sun, but instead I'll just share his drawings that he forced me to photograph, and I will mention that *I* taught him Pluto, 'cause where I come from, we believe in loving us some Pluto. Enjoy!

ps. His spelling may need some work.

pps. HAPPY WORLD AUTISM AWARENESS DAY! Be aware! Or beware! Either way is fine!

The Sun

Mercury, Venus, Earth and Mars

Jupiter and Saturn

Hastily added Uranus, Neptune and Pluto

Bonus Drawing #1

Bonus Drawing #2

H is for Holidays! (and Home, and HUGE HIATUS!)

I think it's been a pretty long time since I posted any updates. I guess I wanted to use this blog mainly for communication about the medical (testing, treatments, etc) aspect of our lives, and as we haven't really had any appointments lately, I just haven't updated. But we've been busy!

In my last post, we were getting ready to start school as summer came to an end. Here's the quick update: We moved! And we're homeschooling.

We're now living in a townhouse, which was an adjustment for us-- no yard for the kids to play in, weird noises, out of control neighborhood kids, not being able to just dump in the grass any leftover coffee that was sitting in the car all day when you get home from work.. but we do have some pretty cute neighbors. Bally's taken with these two. He calls them both "C kuh-kuh-CAT!"






We also have access to a pretty cool playground (which none of the other neighborhood children use, because they're all crazy heathen children and prefer to play in the street, running circles around any vehicles trying to pull in and out.) Doesn't quite make up for our own yard, but Bally has enjoyed learning to do some stuff he never got to do before, like learning to climb "scary, shaky rope ladders" (made of chain)..











We still love robots, block tower robots, robot costumes, the alphabet, and video games about astronomy.

 

Since moving, both Bally and his sister have made a lot of progress and have grown up a bit! He has a lot of speech now and can carry on very simple back-and-forth conversations, though most of it isn't yet genuine conversation. We might get lucky and he'll tell us that he's hungry, and wants to eat pierogies. He also might tell us that he's Chinese, and likes to eat Santa Clause. But either way, he seems to understand how conversation works, and he's shown us that he has a huuge vocabulary. He's pretty proud of his words, I think, since he's upped his typical "A is for Apple, B is for Ball, etc" alphabet chant to 2 words apiece, like "A is for Apple AND Ant!" 

I'm not sure I ever mentioned the results from his ophthalmology visit. He can see just fine. This didn't come as a surprise to us, as his favorite past time is memorizing and reproducing things he's seen, even for a split second.This drawing he did of the Disney Junior logo they display in commercials, where there are fireworks behind the word Junior.. which is what his dots represent. And he's taken with his sister's Leapster Explorer, where he plays some Wall-E game that involves lining up the planets according to their distance from the sun.

And just to give a little spotlight to Bally's sister, I'll mention that homeschooling is going wonderfully! Her confidence is improving; we just needed to find the right motivating factors for her, and her learning style too. She's all about computers, and figuring out how to create a computer based curriculum was all we needed to do. So as far as her studies go, when we started in October, she knew only the letter O by sight. Now she knows all her letters, and what they sound like. And as far as her extracurricular computer use.. well, not only does she know the ins and outs of playing The Sims 3, but she knows how to put in and manipulate the cheat codes so that her Sims never have to work, can have parties every day, and can recolor everything they own to PINK. And have faerie wings. So we're doing pretty good.

We're in a new county now, so hopefully I'll have an update shortly, after I receive word on where to begin with placing Bally in a preschool program. We have to start from square one, and I haven't been able get anywhere with it yet. Maybe after the first of the year.

Either way, HAPPY HOLIDAYS!

G is for "Get Away, Grandpa!"

We've been keeping very busy lately, trying to cram in as much family time as we can before the kids are shipped off to jail school. Aside from our previously mentioned trip to the beach, and a trip to the hospital (ugh) with Bally's fractured arm, we visited the National Zoo in DC, and the Baltimore Aquarium!



I don't really have any family pictures to share, because during both visits Bally spent the majority of his time cuddled up in his stroller asleep. They're not very exciting photos. It rained during the entire zoo trip, and in several of the buildings, strollers weren't allowed. Plus, probably because of the rain, the animals were just lazing around as far from the fences as possible, and Bally's pretty sure he didn't see any animals all day.

He enjoyed the aquarium a bit more, though, especially when the really big fishies would swim towards the glass. Whhooooa! was the general consensus. He laughed out loud during the jumps at the dolphin show, and screamed bloody murder when the announcer would come on the loudspeaker to explain the next bit. We got shot with more than a couple of angry glances. We also got completely soaking wet, which also made Bally scream, because he didn't understand why he was suddenly being attacked by killer whales with wave launchers. On a side note, his sister really liked the seahorses, and both of them enjoyed the jelly fish invasion room.

(See the bottom left corner of the photograph to the right for exclusive footage of a man in a speedo bathing on his house tent-boat.)

When we were back from the aquarium and settled in at home, we got a visit from Uncle Bob. I brought Bally down to visit while Grandpa showed off some pictures and video he had taken throughout the day. During all of this, something went terribly wrong, and it was Grandpa's fault. I don't know whether it was over-stimulation from too many voices at once, or some scary fish picture, or the music in the background of the shark videos, or whether it was simply laundry time.... but Bally's sister came to us and said "Um, guys, I think you need to come see what Bally did."

And this is how we found him. Hiding in the dryer. Eating chocolate. Refusing to come out. And it was definitely Grandpa's fault.

Afterwards, he held a personal grudge against Grandpa for about a week. He said "Nononononono!" to going to visit Grandpa, and a few times ran to the gate and screamed "GET AWAY!"
It seems like he's starting to forget now, and I guess we'll never really know why they were feuding. It was guy stuff, I guess. Not my place to pry into the rules and hierarchy of man-world.

I'm going to change gears here and switch back to the subject of school and medical appointments and paperwork now, so let's have a brief intermission and make sure all our things are in line.

Okay, good. I'll continue.

I've been running into a lot of obstacles with school enrollment for both of the kids, because we rent without a lease. It seems so simple. 5 words. We. Rent. Without. A. Lease. Yet these words have cause utter CHAOS. I can say that it pretty much rendered useless all of the people who I was in contact with for Bally. Are we the only people who have ever done this?! The problem is, everyone is guilty-until-proven-innocent when it comes to residency: if I can't furnish property taxes or a lease with my name on it, it's because I definitely don't live in Montgomery County. I just want to drive all the way up here to troll these people.
Luckily, Bally's sister actually has a "home" school, and they were very helpful. Not only did they send out someone to verify that we have a house that looks very much lived in, but while they were there, they met Bally and filled out a set of papers for him, too! So his big sister is officially going to kindergarten this year, and his paperwork has been sent in to start the evaluation process and hopefully place him in a school sometime soon as well. And to be completely honest, it won't hurt my feelings a bit if he isn't placed for a few months, or even if he has to wait until next year. I know he needs to start some kind of therapy as soon as possible, but dealing with 2 entirely different bus schedules for 2 different schools is just not something that I'm excited about. He's doing just fine in his homeschooling with Grandma, where he's learned the write the whole alphabet in upper and lower case, he's learned the change his own diaper (??), give hugs on command, answer questions with relevant (however, usually untrue) responses about 33% of the time, and scream "I'M SORRYYY!!!!" at the top of his lungs, all the while looking not-so-very sorry.

And as we got all of this rolling, I realized something-- because it was an open-ended "whenever you guys have time", and there was no appointment set, I completely forgot about Bally's genetics testing. We really had just way too much thrown at us at once. But he doesn't need to see his pediatrician until after his birthday, and he doesn't have his ophthalmology appointment until October, so I think we'll just chillax for a week or so. All throughout this we've been trying to buy a house, which could warrant a blog of it's own, so I won't even get into it except to say that we just need a break! We're just about out of time to take any more trips before school starts, but we may hit the Montgomery County fair sometime this week.

In the meantime, try not to let this guy keep you up at night. I'm sure he's a really nice fellow.

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!