The Domestic Scientist

Here’s the original post from my husband, Alex. I could have reworded it to better fit my blog, but he said everything I was feeling and more:

A few days ago, a colleague forwarded me a story about children with autism using the new iPad to communicate. For those of you not familiar with the DynaVox picture-to-speech device, it’s insanely expensive, and most people can’t get one because their insurance doesn’t cover it. Lo and behold, I found that a lot of parents with autistic children are interested in the iPad. Please see the articles here, here and here. You’ll notice a lot of references to the Picture Exchange Communication System– that’s the therapy that has been recommended to us for home use. I’ve linked the Wikipedia article for your perusal.

My son is 3 now, and he has a lot of work ahead of him. His communication impairments are severe, and it takes constant vigilance on our part to help him learn to speak. As of this moment, he mostly echoes what is said to him in the hopes that we will give him whatever he wants. If we are lax in our teaching methods at all, it starts a cycle of immediate regression. You can imagine how it feels to see him just locked in his own world, unable to respond to most external stimuli, and how I would do anything to help him adapt to our world.

A lot of you have asked how my son is doing ever since my post shortly before episode 27. I just want you all to know he’s improving, and we’re starting to get a handle on the scope of his disability. There isn’t a lot of hard data on autism, even though it’s one of the fastest-growing diagnoses in the world. That means that there are a lot of quacks out there who are more than willing to make a buck at the expense of your child’s health. Originally, I just dismissed this iPad thing as a fad.

Then I gave my kid a DS to play with.

It was incredible. He held the pen like a pro! You can see the gears turning, and I hope the possibilities are present in your mind. To you, he may just look like a normal three-year-old… but I guess that’s the point, isn’t it? Just like a normal boy. I wanted to cry.

There aren’t a lot of accessibility apps for the DS, as you can imagine. With its giant hinge, it’s not exactly made for toddlers. To make matters worse, his therapy, the only therapy that has worked so far… comes out to $24k per year, with no insurance coverage.

I never meant to ask you all for help. I wanted to make a product I could sell you instead. But here I am, asking if you will ChipIn to help us get an iPad for my beautiful son. I promise to post videos of his brilliance.

For my birthday I decided to be crazy-go-nuts on my own birthday cake and really push my boundaries as a novice baker. I figured since the only one to disappoint is myself, no harm in trying something that can fail horribly, right? And ya know what, I didn’t do too bad:

Click here to go to Flickr and see it larger.

I didn’t use any fondant, since I hate the stuff. It’s almond cake and rice krispie treats with modeling chocolate for the cake and gumpaste for the Daleks. Did you know modeling chocolate is remarkably easy to make? I did learn that you can’t paint it like fondant. It acts like a waxed car. But it tastes DELICIOUS. I mean, who wouldn’t love cake covered in chocolate?? So yup, besides the wooden dowels, it was 100% edible! I’m quite proud of that.

I don’t know if you can see what I was going for with the flying Daleks and the base of the cake. The Daleks were supposed to be shooting at the Tardis, disguising the wooden support structures under their “exterminate” rays. Well, one Dalek fell off during the cake move to the table, and I ran out of time to really disguise the wooden dowels and add “battle damage” to the Tardis. The second detail that I was going for that didn’t work out was the base cake decoration. I wanted to have the entire bottom of the cake embossed with the design from the Master’s pocket watch, but only got the top of the cake. When trying to make the chocolate go all around the cake, it broke, and since it was already contaminated with icing, and I couldn’t disguise the cracks easily (and it was 2 am by this point) I just covered it with frosting instead.

This was a wonderful learning experience, and I want to revisit this design again. I think now that I’ve done it once, I can really knock it out of the park next time. Not sure when “next time” will be. Not too many people are nerdy enough to request a Dr. Who cake!

But the best thing about my birthday party? All my new friends came! It was a little hectic since my house is tiny and we all have kids, but I just want to thank everyone that came. You all have made my life so incredibly wonderful and having you all together at once just made my entire year. Thank you.

I think Twitter has ruined my desire to post stuff here! I just realized I have made 2 cakes and taken dozens of pictures and not posted any of them here. Well here’s a cute pic to hold ya over until I get my act back together!

FYI, Ari has made PHENOMENAL progress at the Riley Center. He uses new words all the time, and has 5 words he uses regularly and unprompted. My kid rocks!

Wanna know what’s awesome? Dinosaurs. And it looks like they’re taking over Etsy! They’re marching on however they can! They’re coming by land!

Dinosaur on a Bicycle by Dark Cycle Clothing.

And by SEA!!

Raptor Rides the Whale by Winged Beast Outfitters

And it looks like they’ve recruited the robots! Oh god, this is worse than I thought. We’re doomed!

Robot and Triceratops by Happy Family.

Ooooh, wait a second, it seems they just want to have a slumber party! Awwwww.

Sleepy T-Rex by Critter Jitters.

Poor dinosaurs. They’re so misunderstood.

I love Etsy. Whenever I get bored, I’m usually window shopping there. So much creativity in one place! Also a lot of really crappy stuff, but I’ll leave the commentary on those items to Regretsy (another site I spend a lot of time on when I’m bored). This week while looking around for Valentine’s stuff, I found a LOAD of geeky Valentine’s Day cards. Since you all are a buncha nerds as well, I figured you’d enjoy these as much as I do:

Here’s a card for all the FPS players out there from bsangel.

bsangel has many more gamer cards that you should go check out! Like this set of 6 gamer Valentines with saying like “I’m like a plasma grenade. Let me get on you and you are guaranteed to explode.”:

This set of 6 cards from candyspotting will have something for every type of nerd in your life:

Fosten Designs has a binary card for the true computer nerds out there:

A little love for the font nerds out there from upup. I’m looking at you Misty! You should also check out the rest of upup’s store. Some really beautiful design work there!

A nice, but a little naughty, greeting for your gamer from Paisley Dog Press.

And last, but not least, a card from Antemortem Arts for anyone you know what has spent any time on the internet in the last few years:

Maybe there’s still time to get these before Sunday! I hope everyone has a fun Valentine’s Day!

So there’s this kid, right? And he is awesome. Like super awesome. This dude loves robots, so his parents asked for a robot cake. I was more than happy to oblige!

Ignore that stick coming out of the top of his head. It was just for extra stabilization for the drive to the party.

He loved it! This was the hardest cake I’ve made so far. It’s not as pretty as I wanted, but I think for a fondant-free cake, it’s not bad. I learned some lessons in gravity and making stronger bases for skinny cakes. I already have more ideas for other cakes, which is good since I have three more coming up in the next two months! I think this may become a “thing.”

Those of you that were around last year will probably remember these, but most of you don’t know about them. So instead of being clever and creating NEW cards, I’m gonna recycle last years! Bwa ha! Just click on the pictures of the the one you want to download (or all three if they tickle your fancy), and you will magically travel back in time and retrieve the Valentines from ONE YEAR AGO! WoooOOooOOOooOOo! *finger waggles and crazy eyes* … Ahem. Well, yes, anyway. I’ll just get on with it then, shall I?

Here’s some childhood nostalgia for ya! Lego themed valentine.

A valentine for all the D&Ders out there.

And last, but not least: Space Invaders, with three different messages to choose from!

Hmmm… I may be getting ideas for new Valentines…. *ponder ponder*

I promised an explanation on why I haven’t really been on the internet, so here it is.

My son, Ari, was diagnosed with severe autism back in November. I went through a pretty dark time for a while starting even before the diagnosis because I knew something was “wrong” with him. I kept telling myself and family that asked questions that he was just a late talker and I hadn’t socialized him well, so that would explain some of his behaviors. Denial is a weird thing. But in the late summer, other behaviors started that couldn’t be ignored, such as running around in circles until he couldn’t breathe anymore, not making eye contact, flapping his hands, etc. Alex and I bought some books on autism and started doing research on our own, and all signs were pointing to a classic case, but not too severe. We found the Riley Center here in Huntsville, and went there for a two part evaluation. They assured us that as parents, we were some of the best they’d seen, and none of this was our fault, but he did have some symptoms that needed to be addressed. After finishing the medical part of the examination, we got the results back. The Center had rated him as severe, which was WAY worse than we expected. I mean, he’s so sweet, and likes people, doesn’t freak out too much with new places, and is so clever! But it turns out he’s just a little different from your classic case of autism, as in he’s overly passive.

Getting news like that just shatters your soul. While you’re telling everyone “We got him in therapy early, so there’s a great chance that he’ll be totally normal before he’s five,” deep down, you’re thinking about the percentage of children that never recover and just regress further and further into their own minds, never to come out and live a full life. You feel like a failure, despite the doctors telling you you aren’t. You can’t stop thinking about all those other children you’ve seen that are past the point of no return, and wonder “will that be my baby one day? Will my handsome little boy act like a shell of a human being when he grows up?” So life is scary right now. It was even scarier when we didn’t know how to pay for the therapy. (FYI, insurance doesn’t cover much, and we were left with $24,000 a year to pay on our own) But now, our families have banded together and I think we’ll pull through that part just fine. It’s nice to have so many people care for one little baby. We are truly, TRULY lucky on that part.

So now, every day, I take Ari to the Riley Center, where he’s undergoing intensive ABA therapy. He also has a speech therapist and occupational therapist that come to our house once a week. Every day life is no longer “easy” (like it ever is with a toddler). Simple tasks, such as eating lunch, giving him juice, and playing with toys, have become training exercises. It’s exhausting. I miss just innocently playing with him, thinking some of his behaviors like spinning in circles were “cute,” and just giving him juice when he wants it, rather than it being a huge power struggle. I feel lost not knowing when we’re pushing too hard, or not enough. If we push harder, will he regress even more because he’s so frustrated? Or if we don’t push hard enough, will he ever progress like he needs to? Not knowing exactly what to do is the worst. But we’re doing our best and hoping we’ve made the right choice with the Center.

So you can see why my crafting has taken a back seat. At the end of the day, I just want to be with Alex and turn my brain off. The only thing I’ve made recently was a cozy for my Garmin. I hope to get back in the seat soon now that craft night will be picking back up and I’m feeling more stable emotionally. I did join a gym which has been WONDERFUL. I previously hated working out, but when you have as mush stress as I do, running on a treadmill until you can’t think straight is delightful! Who knew? Maybe this year I’ll actually loose all that weight that I’ve been telling myself to loose for the last 5 years!

This is the mental state I’m constantly in: Stay optimistic and do the best you can do, and don’t let anyone see your tears. It will all work out in the end, and even if Ari doesn’t recover, he will always be my sweet baby boy.

As a show of good faith that I’m still alive, here’s the most recent geeky project/cake I completed:

I made if for a friend’s son’s Jedi birthday party. Loads of fun! And it tasted delicious, which is more than I can say for the Pac-man cake. Oh well.

Anyway, for those of you that follow me on twitter may have already seen this and know what’s going on in my life at the moment, but for those of you that don’t, I’ll come back in the new year with an explanation and hopefully some more crafty goodness for you. See ya in 2010!

I’ve been scheming this project for a couple of months now, I just had to wait until it was completed to even talk about it. Alex’s office is a very important room in our house, but you wouldn’t have known it to look at it. We spend every evening in there either doing the podcast together, or both of us working on a different project (like he would be writing, and I would be knitting). But since it’s the only off limits room to the baby, it had also become our storage room. To get to his desk, Alex would usually have to do some fancy footwork to get around the boxes and miscellaneous pieces of junk that we would just throw in there. So I decided it was time to end that. Alex deserves better than that. He is so supportive of me, spoils me rotten, puts up with my crazy mood swings, is a great father, and just all around perfect husband. He has so many talents that he needs a place where he can hone them all, and have a little oasis from the stress of work and the kid. I knew he was going to Adobe Max so that gave me 5 days to put my plan into action. Not an easy feat when you’re having to take care of a 2 year old at the same time. But I hauled ass and cleaned out the room, gave away his old furniture, bought (and received from our parents) new furniture, painted, and decorated the heck out of his space. Here was the result:

I wish I had taken a before picture but I was in such as hurry, that basically as soon as I got back from dropping Alex off at the airport, I started cleaning. I didn’t think about it until the room looked livable. Oh well. I was trying to make a manly creative space so he can write and record comfortably, but also a place where he and his friends can hang out. I think I managed that If you would like to see some detail shots, go over to my Flickr Page. This biggest additions are the new desk, ceiling fan, and swivel mic boom so we can record easier. The typewriters and bookshelves were donated by Alex’s mom and the ceiling fan and futon were gifts from my parents. My parents also deserve some credit. Without my parents coming down for two days to watch Ari, and help clean and move stuff, I couldn’t have done this on my own. And Alex’s dad helped me go get the desk and bring it back here. Also, all the art besides the Monaco picture and typewriter tins were done by our friend Chandler. You should go check him out. Awesome artist and awesome dude.

When I brought Alex home, I had him close his eyes while I led him to the back. I can’t even begin to explain the expression on his face when he saw everything all at once. To say he loves the room is a gross understatement. He didn’t even want to leave the room when it was time to give Ari a bath. *big grin*

I did have one catastrophe, however. Yesterday, in my mad rush to get everything put away before he got home, I apparently didn’t secure the lid on the black enamel paint. With a little help from a certain person who lives here that is under 3 feet tall *ahem* the can ended up on our carpet:

*sigh* Oh well. We wanted new flooring anyway. I guess it will just have to happen sooner rather than later.