More Potty Talk

What a busy couple of weeks it has been! Aside from all of the usual appointments, classes, work and play schedule I've had to make room for an old friend who came back to visit: insomnia. I have been having trouble staying asleep lately, but I'm not alone. Either Avi or Itai are often up to help avoid any loneliness I might feel in the middle of the night.

Oh melatonin, why have you lost your power?

Aside from their new night shift the boys have been working on some pretty exciting things.

Avi was given a "social story" book from school. Social stories are very simple stories that are frequently used with children on the autism spectrum to help them know what to anticipate in new situations, overcome anxieties about difficult situations they are familiar with or to help them connect a story to something they enjoy. Avi's story was designed to help him overcome his toilet anxieties. We are meant to add pictures of "novel" toilets (toilets he doesn't use every day) to help him understand he can use the restroom in a variety of places and he can even use it to "do number 2." (You never know when a squeamish reader will stumble upon this.)

Little did the teachers know that Avi had already had success in pooping on the potty at home. Debbie put him down and told him to do it not knowing what to expect and suddenly he had done it. After that he's had more and more success. It makes him so happy and proud every time. He jumps up and down, claps for himself and draws our attention to it. He's still had a few accidents along the way but this is such a HUGE step for him...and us. I'm not kidding even a little when I say my quality of life improved a great deal with even his first success.
Other than that he continues to progress in his school program. He's working really hard and we couldn't be more pleased with his efforts. He's still happy and wiggly, but he's learning to set the energy aside until a more appropriate time.

Itai, not to be outdone is having his own potty success. Last week as we left church I carried him past the restroom. He insisted that I take him to the potty. As soon as he got to the potty he was peeing. He's doing great at it. His biggest obstacle is his stubbornness. He loves using the potty as long as it's his idea. If we suggest it he can get quite irritable about it.

He's also quite the little talker. This week he's learned some new works and phrases. His newest one is, "I don't know." He also introduced, "Give pencil back!" "Avi did it!" and "Not ____" He fills the blank in with whatever he wants to argue about. Right now he's arguing that one of his race cars is not a race car, just a car. Ok. It's just a car with a cockpit for one, aerodynamic design, racing stripes and a huge spoiler.
Itai has also decided that following Avi's every footstep is the greatest pastime ever. Avi really hates it, but he's found a new activity. Toys! He is finally looking with and playing (kind of appropriately) with age appropriate toys.

What cool kids!

Life on this Side

On the recommendation of a friend I finally got around to reading "Just This Side of Normal: Glimpses into Life with Autism" by Elizabeth King Gerlach. This book is a brief description of life with her son, Nicky. At just over 140 pages with large print it is a very easy read. The read becomes even easier thanks to her straight forward and heartfelt writing style.

From the very beginning of the book I was in. I love her constant desire to find a connection between autism and everyday life. Her son loves to spin and she describes the looks of derision that result from his constant twirling, but she says she finds comfort in the thought that the whole world is spinning. The spinning of the Earth means that everything we do, we do spinning.

I feel very strongly about the narrative of autism that is being created in the media. Books in large measure are written to describe one extreme or the other. People with autism are being portrayed as either "savants" or "savages." These descriptions only serve to further the stigma of autism. Instead of humanizing people with autism they alienate them. This isn't to minimize the savant or their experience, but I think it is important that every aspect of the person should be explored, not only the extraordinary, but the mundane as well. This book does a great job of striking a balance between her son's savant-like abilities, his extreme rigidity and yes, even his "typical" characteristics.

I was pleasantly surprised to find many of the author's thoughts so closely reflected my own. One quote in particular made me want to stand and shout, "Amen!" Describing reactions to her son's disability she says, "Society views disability as a 'tragedy.' In fact, the greater tragedy is society's larger and erroneous view that their is such a state as 'normal.' This view, in itself, sometimes feels like a greater burden than the disability." Beautiful. Simple. Absolutely how I feel.

This book meanders and wanders from story to story, experience to experience leaving you, at times, to wonder if it getting anywhere. In this it is truly a "glimpse into life with autism." Life with autism frequently seems to go from one experience to another leaving you to wonder if you are getting anywhere.

I really enjoyed reading this book. It is a very honest and simple look at life with autism, with no agendas or hook. Please, borrow this book from me. No, seriously read this one!

Trick or Treat!

Halloween may have come and gone (even if it is still Halloween), but the requests for candy may never end. The pumpkin candy buckets are still being carried around and Itai is still sporting his wings around saying, "Fly!"

Somehow Halloween stretched to three days of celebration. First, we decided to carve our pumpkins. I knew that the inside of the pumpkin would be an unwelcome sensation for Avi, but I thought we could just try. It turns out that Itai and I didn't like it that much either. Why don't I ever think about these things? Oh well, next year we'll have paint available. Either way, Debbie wasn't interested in carving so it was just the manly men and the pumpkins. Avi decided quickly that he too did not want to do it. He came back every once in a while to chew on the pumpkin guts (yuck!) and to poke at the pumpkin with the little tool we bought. Itai stayed to use the shovel to scoop out the insides and to put the lids on and off over and over. All I can say is that I'm glad that's over with! :)
Next up was Avi's school's "Fall Parade." Why can't they call it Halloween? Who knows? Anyway, Avi got to wear his costume, parade around in the gym and then go back to his class for a party. I was lucky enough to volunteer at his school that day so I got to help the kids get ready for the party. They were definitely ready for the party. The energy in the room was very high and when they finally got to put their costumes on everyone was ready to show them off. Avi's class had a Thomas the Tank Engine, a Raggedy Andy, one very excited Ironman complete with a light up chest, Batman, a doctor, Frankenstein, a vampire and of course, Woody.
The parade was a sensory filled experience with really loud music, extra clothes, a gym full of people taking pictures and of course, the constant promise of candy. Luckily for the kids, the parade ended quickly and the parties began after a quick trick or treating tour.

The kids played games and did crafts then they got to the best part: eating!

Itai's Fall parade was much shorter. They got dressed up, had a parade combined with trick or treating and that was it. Itai realized very quickly that he liked this very much. He extended his baggie to anyone who he suspected of being in possession of candy.

Saturday we hit the road to do a trunk or treat at with Aileah, her parents and Aunt Sheri. Because of the rain we were moved into a very crowded gym. Itai's wings bumped every child in his path and Avi was bumped around by the throngs of children eager to fill their bags.

Having cleaned out the gym we hit the streets. Five houses into our trip the rain came back with a vengeance ending this year's candy hunt. Look out next year! Itai has a taste for Halloween and he will be back! :)

Say What?

Having gotten fairly accustomed to having a child who is nearly nonverbal I never really thought I'd have on of these posts, but what do you know, he spoke! Itai is talking nearly nonstop now, so he's bound to say things to make me laugh. Oh and Debbie, she's said a thing or two as well.

So what did Avi say?

Well, after his surgery when he finally started eating again he bellied up to the table to enjoy some chocolate ice cream. He slowly started eating his ice cream. He was in obvious pain and discomfort. After eating a bit he suddenly said in a deep and scratchy voice, "Disneyland?" We promised him that we would go, but first he had to get better.

Of course, Itai has to have everything Avi has so we got Itai a bowl too. Itai climbed into his chair, looked into his bowl and said, "No." We asked what was wrong and he said, "Poopoo!" At first we thought he had a dirty diaper, nope. He pushed his bowl away and said, "No! Poopoo!" Eventually we were able to convince him it was ice cream, but he still didn't seem to want it.

Now it's Debbie's turn. There is a little boy in Avi's class who calls me daddy every time I go volunteer. One of the teachers could tell that I wasn't exactly comfortable with this so she helped him repeat my name several times. He still calls me daddy the first time he sees me, but then I ask him what my real name is. "Jared!" We saw him at the fun fair with his parents. His dad is about my height and his head is shaved. Debbie saw him, turned to me and said, "No wonder he calls you daddy; you look just like him!" Zing! Clearly his dad is extremely handsome.

Today Itai was playing downstairs while I was upstairs putting the laundry away. I had barely gotten to the top of the stairs when I heard him screaming at the top of his lungs. I came running down to find out what happened. He scrambled up into my arms and said, "Truck!" I asked if he hit his head on a truck. He said, "No! "Fraid! Fraid! Truck!" It seems the garbage truck made a loud banging sound when it picked up the dumpster. Itai wouldn't let go until he had seen the garbage truck and realized it wasn't crashing into the garage.

Fun Fair!

Avi's school sent us a flyer announcing this year's Fun Fair. We weren't really sold on it until we saw these words, "Bounce Houses." Let me translate that for you, "Avi's Heaven on Earth." Ok, we had to go. There's nothing like adding extra fun to a really busy weekend, but a bounce house is something we couldn't forgive ourselves for missing.

We packed up and headed off to the fair. Other than Avi suddenly singing, "Saba, Saba" (Grandpa in Hebrew) when he thought we were heading there it was an uneventful ride. Who would have imagined the chaos that would ensue after this peaceful start?

When got to the school and didn't see any fair. We wondered if we weren't in the wrong place so Debbie went in to investigate. I parked the car and started to get the boys out. I had gotten both kids out when Debbie made her way back. She asked if I had locked the doors and I said no. I wondered to myself, "What was the reason I didn't lock the doors?" Oh well, on to the party!

Avi was in love! The school had rented out three huge bounce houses. Avi started in the dragon house. Itai saw it and said, "Dinosaur" and didn't want to climb in at all. We got to talk with one of Avi's teachers for a while. We found out that her nephew has autism and she'd volunteered at the school with him before he left the school. Now she's working there and she told us, "It's hard, but I go home rewarded every single day." It's truly nice to know the people to whom we've entrusted our son are good, kind people who really do care about him.

After Avi saw the inflatable slide he moved away from the dragon. Itai wanted to slide too, but the stairs were so steep that he couldn't manage. So the unfortunate slide had to deal with me pounding it as I climbed up the stairs and then went flying down the slide after Itai.

I would have liked to have had more pictures, but I was kinda busy going up and down with the other. . . er, with the children. But I was lucky enough not to have to pay to use the slide. A boy at the top was demanding money from each child to use the slide. When he asked me i told him I didn't have any. He said, "I'm the manager, but it's only pretend money." I told him I didn't have any money, but I was a pretend police officer. After that Itai and I had a free pass every time.

I was pretty tired from climbing and sliding over and over (Avi and Itai were not) so we decided to break for lunch. Itai was happily drinking his water, but Avi wanted his juice so we needed to get it from the car. That's when it dawned on me. The reason I hadn't locked the car was because the keys were still in there. Oops!

Can you see them there? It's kinda hard to see, but there they were taunting me.

I'll glaze over the horrible locksmith story and just say it's a really good thing that Avi's school has a great playground. Our little guys were so patient while we waited and waited.

Avi takes his play very seriously.Itai too. I guess they were all smiled out.

Finally the doors were open, we were in the car and on the road.

P.S. Avi had an appointment with a photographer today. She's doing an exhibit to raise awareness of autism. Keep posted for an update on when and where the exhibition will take place. Just don't hold your breath, it might be a year or so.

My Little Pumpkins

Avi is still on the mend, slowly but surely. His appetite is definitely back and the pain is slowly fading away. He has been begging to eat at his favorite restaurant on earth for days. His diet is still pretty limited and he's already lost a few pounds, so when we accidentally drove past it at dinner time and he was completely heart broken. So we decided to go back later and reward him.

After devouring the jello he moved on to all of his other favorites. If it was soft enough for him to eat it was on his plate. It didn't take long for him to clean his plate start a new one either. This wasn't much of a surprise. He's been doing this the last few days. He scarfs down his food and moving on to something else.

Tonight he wasn't in a great mood, but when Uncle Tom walked through the door his mood suddenly changed. He was hugging, smashing and crowding Tom as much as he could. He calmed down a bit so we could go outside to cook the burgers. He and Itai enjoyed a nice swing in the cool wind until Aileah joined us. Once she came out Avi was on the moved and she and Itai spent some time swinging together until they all went for a little walking adventure.

Once dinner was over Itai and Aileah decided to get better acquainted. Itai was very happy to have a little playmate. He's been trying like crazy to get Avi to participate in games, but hasn't been able to yet. He and Aileah made a game of chasing each other then running into a favorite hiding place. They were screeching as loudly as possible and laughing hysterically about it. Sadly, the they both became camera shy and stopped screaming as soon as they saw me.

Thanks Aileah's mom and dad for coming and bringing her with!

After Aileah and her parents left Avi wanted to try out a new use for the pumpkins. It turns out the pumpkins are not exactly the best shoes. And you know what they say, "Itai see, Itai do." Isn't that the phrase? Whatever it is, that's what happened.

Of Tonsils and Superman

I woke up at 4:00 on the dot with no alarm. Me, Mr. I-Couldn't-Wake-Up-for-An-Earthquake, woke up before anyone else. Avi had a 6:00 surgery we didn't want to be late. Once Avi's distraction were packed in his backpack and my distractions were in mine I realized 4:00 was probably a little too early. Oh well, everyone else was sleeping and Avi was spending his last remaining moments sleeping with his tonsils and adenoids. Little did he (or they) know that they'd soon be parting. Avi hated the little ID band. Eventually they cut it off and slapped a sticker on his back.

I woke Avi up a little after 5:00 and we were on our way. He was very tired and didn't know what was going on. He was pretty quiet the whole ride, but when he saw the Costco on the side of the freeway he finally spoke up. "Costco! Want Costco!" He wasn't allowed to eat any breakfast so I think when he saw Costco and thought of the samples and all the food it seemed like a possible and desirable destination. Sadly, our destination was nothing like Costco.

Our car was the first car in the hospital's parking lot. The halls were empty and I was really glad we'd done a different surgery at Primary's otherwise I wouldn't have known where to go. Avi was happy as could be and was bouncing around the empty hallways.

He did great with everything there, from the weigh in to the vitals, he even did great with having his medicine squirted up his nose. As the medicine kicked in he only got happier. A huge smile broke and he couldn't stop laughing at nothing, or everything. I thought it was kinda cute that Avi was drawn back to his little zebra. He is much bigger than the last time he sat on it.

They had me carry him to the OR doors and hand him off. He's grown so much since our last trip there that his long legs stuck out far from under my arms and the nurse said, "Oh, I didn't realize he's so long. Maybe we should have gotten a wagon." Oh well, it was a gurney from here on out.

The surgeon came and told us everything went well and we could see him soon. Surprise, surprise his recovery from the anesthesia was painfully slow. He refused to drink and the nurse insisted he drink his entire cup before leaving. He came back around 7:30 in the morning and at 11:20 he still hadn't had more than a sip. His nurse left for lunch and we let him sleep. We slipped out for some lunch of our own and when we came back we found the replacement nurse getting him ready for discharge. While the first nurse was gone she called the surgeon told him he wouldn't drink and according to his history was unlikely to drink while there. The surgeon said he could leave after a bolus which ended right when we got there. We were just leaving when the first nurse came back. She didn't seem happy that we were leaving. Sadly for her, we left and that was that.

Recovery has been slow and painful for Avi. Last night was pretty miserable for him (and us) but he's doing much better today. He's still not drinking, but he's got his appetite back. Thank goodness he loves Mandarin oranges! He's also eaten his ice cream that everyone said he HAD to have.

As soon as I stepped away from this Jello cup he pounced on it like a lion on a gazelle.

So, he's been sleeping, fighting the forceful administration of his medication, refusing to drink, eating, going to the bathroom and tonight for the first time since surgery, smiling.

I feel like I'm forgetting someone. Who could it be?

Oh right! Itai has had a completely different two days. His energy level is way up and he can't understand why Avi is falling asleep all the time. After being cooped up all day today he and I went to the park. I remembered a blog post from last year where we went to the park during fall break. It was sad remembering Avi was with us last year, but this year he was suffering on the couch. Itai enjoyed himself anyway. He has changed so much in the last year. Last year when we were at the park he was unsteady and couldn't cross the little bridge. This year he flew across it with no problem. Last year he couldn't swing because he was afraid and they didn't have the little kid swings. This year he went on the swing alone and even did Superman, even though when he was done he said, "No Superman!"

Itai has decided that he needs medicine too. He gets upset every time Avi is force fed his medicine. Today I pulled out an old syringe and filled it with juice. He loved getting his "medicine." Oi va voi! That kid never lets us rest.

This evening both boys are pretty tired and ready for bed, just like me!