Tuesday, November 02, 2010

this is a long one.

The past couple of weeks have been huge for Elliott. About two weeks ago, we were sitting in a frozen yogurt shop having dessert together. Since Elliott can't have dairy, he was eating a little cup of jelly beans. When he got to his last one, he held it out to Ben and said, "Here, Ken-Ken." Ben took it and ate it and said thank you, and Elliott looked please. Ryan and I tried to contain our excitement. This was the first time he had ever shared like this. Ever. A huge step for him. Since then, he's been sharing a lot. He brought a bunch of toys to his cousin Stella and he regularly shows Ben items of interest. Again, something clicked in his brain and he changed slightly.

Last night, something else clicked, and he and Ben pretended to be cats. Elliott followed Ben around, meowing and pretending to drink milk. He will pretend play like this if we prompt him, but we didn't have to this time. Ben is so good to Elliott and teaches him things that no one else can teach him. Elliott feels safer with Ben than with anyone else, including Ryan and me.

This past weekend, Elliott and I ventured alone to Sacramento to be a part of the MIND Institute's Autism Phenome Project. It's the largest autism study ever done, and the first to look for types of autism rather than lumping all autistic people together. Elliott had his first airplane trip and for the most part it went well. I thought he would be more excited about the rise into the air, but he just stared, a little blankly, which I hate to see him do. Ben used to be the same way though. Things I thought would excite him, didn't. Things that seemed to excite no one else, did. And now that's all changed for Ben, for the most part. And hopefully it will for Elliott one day.

The first day, Elliott and I checked into our hotel room, ate together and found a playground to play on. There were some very annoying, mean little girls, one of whom stepped on his head, but he had a great time. The next day was a different story.

First, he had to get blood drawn. Then a lengthy medical exam during which they examined his skin with a UV light. He did not appreciate that. Next, an ERP. I forget what it stands for, but they put a cap on his head attached to a thick coil of wires. The cap has about 50 holes in it and they prod at the holes, swabbing each one while pulling Elliott's hair. The people who ran this activity--and this was a first--were insensitive to his autism, and kept touching him and shoving toys in his face. For the first time, I second-guessed my desire for him to be a part of the study. Why was I subjecting him to this? Would I make him feel weird or different? Then, for an hour, Elliott and I had to sit in a lightless, soundless room staring at a screen while they measured his brain waves. I had to sit in there with the girl assistant while she told me to make him more relaxed or make him more excited or stop moving or get him to stare more intently at the screen. She kept touching his body and I kept suppressing the urge to yell at her or punch her in the face. She was so young and didn't understand what it is to be a parent, what it is to have a child with autism. She just needed to do her job and collect her brain waves.

Elliott was not pleased when we left and his hair was encrusted with the brain wave gel they had squirted into the cap. He looked like a miniature homeless man, his clothes soiled, his hair disheveled, a world-weary look upon his face.

We had a few hours off, so we went back to the hotel and I gave him a bath and I let him play with my ipod.

Next, at 8pm, the MRI, the thing I had been dreading. He had to be asleep for 30 minutes before the appointment started, so we ate, and I got on the freeway around 6:30pm. I put white noise on in the car and started driving. I made it almost all the way to San Francisco and then drove back. It was raining and I was tired so I stopped for a coffee and kept driving. Eventually, Elliott fell asleep, so I continued driving for another 30 minutes and arrived just on time to the MRI location.

As soon as I pulled in, as predicted, Elliott awoke. A light rain continued to fall and woke him up further. But when we got inside, he immediately fell asleep again. Over the next 45 minutes, the neurologist, the technician and I gently placed ear plugs, then headphones, then a weighted blanket on him. He continued to sleep, to my surprise. We then carefully slid him into place on the MRI platform. They put a laser on his head and adjusted the settings. They slid him into and out of the machine. He slept on.

For the next 30 minutes, they conducted the set of 5 scans. I was told that often they only are successful at obtaining the first scan and that this would be good enough. The sound was shocking. Like a jackhammer or helicopter or artillery fire one foot from his head. But Elliott didn't even twitch.

Despite the noise, I almost nodded off myself. It was nearly 10 when we were finished, and as the neurologist walked me through the compelling images of my son's brain, I struggled to keep my eyes open. Elliott continued to sleep while the technician watched him.

I was profusely thanked for being a part of the study and encouraged to stay with it for the next two years of our commitment.

I watched Elliott during the ERP and I watched him in blue light of the MRI machine, and I felt like a terrible person for putting him through all of this. At the same time, I feel it is important to research autism and it is important to gain access to all of the information I can about him. I still feel conflicted about it.

When we got home, both of us were exhausted and cranky. I slept and Elliott watched his favorite television show. We don't have to return until next summer, so we have plenty of time to recover. In the meantime, things will click in Elliott's brain and he will change and grow and continue to surprise us all. And a neurologist will measure the new connections made, the blood flow, and hopefully it will all make sense one day.


Kindra said...

Wow. You are SO committed and brave and so is Elliot. Proud of both of you and praying you will get some answers. And SO awesome of his progress. :)

angela said...

Thanks Kindra...doing me best. :) Hope we can hang out soon!

jim said...

Elliott is our real hero and that big brother of his is amazing. You are raising such beautiful, sensitive little boys who will grow up to be compassionate, sensitive, and caring men. I love you and am profoundly proud of you and Ryan.

angela said...

Thanks, Jim. I love you too and we couldn't do it without all of yours and Mary's support. :)

Lauren Eleanor Lanning said...

Your and Ryan's dedication and desire for more information and understanding is so inspiring. Every time I read your blog, my eyes well up with tears because you are so honest, sincere, and so loving. You have two really amazing boys who are so blessed to have you as parents. Thank you for continuing to write; I feel like I have a window into your world, and I find your candor very refreshing,
Love you guys lots.

angela said...

Thanks, Lauren. I love you and miss you. :)

MrsDoF said...

Bedside sitting is most difficult.
You are such a good momma bear :)

~~love and Huggs, Diane