We're Back

Another pilgrimage to Disneyland is completed. This time our group was eleven members strong. That's right. We walked around Disneyland with two strollers, one electric wheelchair and eight people on feet. As you can imagine getting around as a group was an experience.
I'll spare you all the gory details of our trip and just discuss a few highlights/low lights.

Avi's tantrums are reaching epic proportions. The first few days he was so agitated at not being able to use the bathroom when he wanted (he still had major anxiety about public bathrooms) and not eating the foods he was used to. Also, it was a little bit cool there so he wasn't very comfortable. The first two nights he had major meltdowns and abruptly ended our nights. The third day Avi peed in a Disneyland potty twice. He was so much more comfortable that we were able to stay in the park as late as we wanted. Then the fourth night he used the potty the whole day. We lost count of how many times he used it! He lasted the whole night long and was so comfortable he was actually able to enjoy the parades, the rides and especially the company of his cousins. Going potty in a public bathroom opened up so many doors for Avi and we couldn't be more proud of him!

Itai wasn't interested in the potty. He was very interested in the magic of Disneyland. He loved the rides. After Pirates of the Caribbean he said he wanted to be a pirate. He loved seeing Buzz Lightyear and begged to give him a hug. Most of all he liked seeing Lightning McQueen. As he passed us on the parade route Itai's eyes lit up and a HUGE smile broke on his face. He reached for "McQueen" and wanted to hug him. It was so cute! He also loved spending time with his cousins. As we walked home one night he started saying, "More cousins! More cousins, now!"

Other than those things we had rode the rides, ate the food, wore ourselves out and had fun.

Most of these pictures were taken by our niece/cousin Amber. Thanks Amber!

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!