mit study

Ava has high functioning autism, or Asperger Syndrome. Until now, I've made a point of never mentioning Ava's diagnosis here. I've discussed whether I should with her and she's fine with sharing. And since I believe in early disclosure with your child, and if I met you on the street I'd have no problem telling you all about it,  I figured it was time to be open about it here as well. Besides, this story would never make sense without knowing that rather big fact about our lives.

A couple of years ago, we took part in a study at Mass General Hospital that is trying to determine the genetic cause of autism. They took blood samples from Ava, Kurt, and I (they asked for Zsa Zsa's as well, but I thought she was too young for all this). They also administered IQ tests to all of us. If you've met us, you'll know who scored highest in our family. The study staff at MGH passed our information along (with our permission) to MIT.

MIT asked Ava to come down to take a series of cognitive tests. Not IQ, but similar, to figure out how she thinks. The also asked if she would be willing to do an fMRI. They're trying to find out which parts of autistic brains are active when looking at different images. Are the same parts active in the brains of neurotypical people when they're both looking at a landscape? A person's face?

I have to say the experience with MIT blew me away. They had really spent a lot of time thinking about what it would be like for an autistic kid to go through this experience and made sure Ava was comfortable every step along the way.

In the first photo is the lab we visited for the study. The second shows Ava being fitted for her head size, so that the fMRI equipment would be comfortable. The third is Ava going for a test drive in a life-size pretend MRI. Zsa Zsa came with us, and as you can see, was very concerned about Ava. She got to push the bed into the MRI machine on the test drive.

 Here you can see the grad students running the study prepare Ava to go into the real MRI machine. Ava visited MIT twice and did two fMRIs. She took a number of tests, which she loved. She really enjoyed getting all that attention from the students. And getting prizes at the end didn't hurt either. These folks were smart, so I'm crossing my fingers that their work sheds light on the mystery that is autism.

adventure day

Just after school started last fall, Sage took us up for a fun adventure day in the White Mountains. You can see here that the girls were all about it. Sage and Kurt signed up to do the ropes course, and the girls and I had a terrific time doing lots of other activities.

I took both girls down the alpine slide. I remembered how much fun it was when I was a kid. Ava preferred to have me ride the brake and take a very cautious pace down the mountain. Zsa Zsa, on the other hand, was a speed demon who had me zooming down three times and repeatedly told me not to use the brake. Ava took this photo and the next one, showing the start of the course.

This giant wooden penguin welcomed us to the mini golf area. It was less than challenging and some unattended boys actually hit me with a golf ball. It didn't end well for them.

Here's the ropes course with Sage ziplining back to it.

Can you make out that Kurt is waving as he zips? I bought him a zip line to install at our house a few years ago. Still not installed, but I think he may be inspired to after this ride.

Sage on a platform in the trees.

Ava surprised me by asking to go up the chair lift. I was surprised by the lack of safety features. Zsa Zsa could've easily slid right off, so you'll note I'm holding her (perhaps a bit too) tightly in my lap. It was a gorgeous view of the White Mountains on the way down.

lisa's wedding

A few days after we returned from Istanbul, I headed down to Maryland for my friend Lisa's wedding. Lisa and I lived together for a couple of years in college. She's wicked smaht and spends her days figuring out all kinds of things about birth defects and complicated kids' brain stuff.

Lisa always told me that she'd be forever single. But then she met Carlos.

I love this photo because it shows just how happy Carlos is. And I love that he truly "gets" and appreciates Lisa. So happy for them.

I had so much fun with both their families over this weekend. They were all ready to celebrate this union! This is Lisa and her sister, Kimberly. I can only hope that my girls will care as deeply for each other as these two do.

And here's Lisa and Kathy, long time friends who know how to shuck a crab (do you shuck crabs?), drink cheap beer, and sequence DNA.

This was definitely a wedding weekend where a good time was had by all.

z in the woods

weekend in the kingdom

While Ava and I were in Turkey, Zsa Zsa and Kurt took a weekend trip up to visit friends in the Northeast Kingdom of Vermont.

the cabin

the VW bus that came with the property

in front of the beaver dam

Ivy was happy to see Zsa Zsa

at the top of the sand pit

at the bottom of the sand pit

they look so innocent from this angle

but not from this one - they slid down into the sand pit

Z & Ivy & Chloe

she just loves to pose

this was before the party really got rolling

thwarted by Irene when attempting to visit Bread & Puppet

spoon on nose

Oh the various and sundry skills my children have.

the only exception

Found this video from last year. They so enjoyed Nina singing this song that they decided to try out singing the chorus themselves.