Thursday, April 23, 2009
After going through my pictures from Chicago, I came up with my own "fail."
Natalie and I were walking along Lake Michigan and stopped to take some pictures. I told her she should jump and I'd try and take a picture. We switched cameras and she tried to do the same for me. It didn't work out too well. See for yourself.
Wednesday, April 22, 2009
We did some more shopping and then we hit Ghirardeli for some ice cream sundae's. (Natalie, I cut you out of this picture only because your eyes are closed and I didn't think you'd like it.)
Our last morning there we walked in search of Garrett's popcorn. The morning before I left, I was watching Food Network with a sick Franny and saw that Giada's weekend get-away show that was on that morning was filmed in Chicago. I said to Franny, "Do you remember when we went to Chicago?" She asked if we could go again. I told her that I was going, but that she'd be staying home with Dad. She didn't seem very happy about this. So I told her I'd bring her back some popcorn from Garrett's. I bought her and Sophie a medium-sized bag of the "The Mix." Cheese and Caramel popcorn mixed together. When I first considered that combination I thought I was going to be sick. I couldn't have been more wrong because it is DELICIOUS. I want some more right now!
Jayne and I got to take the train out to Chicago and back together. We had such a blast. When I dropped her off she said, "Isn't it weird that we've been hanging out for three days and we still haven't run out of things to talk about?" It was just a perfect weekend and I can't wait to do it again.
For your birthday post this year I thought it would be fun to list a few of my favorite memories with you.
- Julia and I laying on the guest bed with our wet hair hanging over the edge and you sitting on a chair next to the bed pointing two blow-dryers at our heads on a Saturday night.
- Neil Young concert. Daddy-daughter date. The year 2000.
- You saying, "I bet I can make you smile," every time we were cranky or upset while we were growing up. You always could.
- You whispering that I'm your favorite daughter, and then turning to one of your other daughters and whispering the same thing.
- You playing the guitar for Franny when she was 18 months old. She loved that.
- You holding Franny the night she was born, sitting in my armchair all night and listening to Neil Young.
- You playing your guitar and singing "Blackbird."
- When we were sitting at dinner, and you used to pound on the table with your fist and scream "SILENCE!!" (But only when we begged you to do it.)
- The first time I called you for help and advice when I would have normally called Mom, and afterwards you said, "How was this? Did I do alright?"
Happy Birthday! Long may you run.
Monday, April 20, 2009
It's hard to believe this but Annie hates having her picture taken. Most of the time when I try to snap a picture of her, she turns her head. If I ever succeed in taking her picture, she sometimes makes me promise not to post it on her blog. Well, sister. It's your birthday and all bets are off!!!
When I used to come home from college, I'd come home after going out with friends and climb into Annie's bed to wake her up and play with her. I don't think my mom ever knew. She woke up so sweet and she'd go right back to sleep. Yes, I'm aware that my tongue is excessively long.
Here's a picture I happen to know my sister wouldn't mind me posting.
I saved the best for last. Annie and Julia took me to see Wicked last year for my birthday. We had a blast. We were walking along Hollywood Blvd. and I asked them to strut so I could take their picture. Then "Wicked"-ly I decided to film them instead and put it to music in true humiliating birthday fashion.
Sunday, April 12, 2009
Saturday, April 11, 2009
- 1 hothouse cucumber, halved and seeded, but not peeled
- 2 red bell peppers, cored and seeded
- 4 plum tomatoes
- 1 red onion
- 3 garlic cloves, minced
- 23 ounces tomato juice (3 cups)
- 1/4 cup white wine vinegar
- 1/4 cup good olive oil
- 1/2 tablespoon kosher salt
- 1 teaspoons freshly ground black pepper
Roughly chop the cucumbers, bell peppers, tomatoes, and red onions into 1-inch cubes. Put each vegetable separately into a food processor fitted with a steel blade and pulse until it is coarsely chopped. Do not overprocess!
After each vegetable is processed, combine them in a large bowl and add the garlic, tomato juice, vinegar, olive oil, salt, and pepper. Mix well and chill before serving. The longer gazpacho sits, the more the flavors develop.
Friday, April 10, 2009
Speaking of Saturday morning, I had the opportunity to hear Dr. Rebecca Landa speak. She was the key-note speaker that morning and she talked about early detection of Autism. She said that the complexities of early detection of Autism doesn't allow for easy answers. It's not as simple as, "if your kid is 14 months and he's not doing this, then he must be autistic." She did however offer some really helpful information in how to find a diagnosis as early as 14 months. That's huge. I mean, most people know that there's a window of time in early development (ages 2-5?) where you can make a lot of progress with our kids. After that, sure there can still be progress, but you won't get as far as you would have if the kid had started intervention at 3 or even 2 years old. Maybe even sooner now in light of Dr. Landa's research. What I'm not sure that most people know, is that most children who receive intensive intervention can make great strides with their development. Some may never completely catch up, but if intervention can be started as early as let's say 18 months, they have a much better chance of catching up then if they started a year later.
Here are two videos where Dr. Landa's research was featured:
Kennedy Krieger's Autism Research featured on ABC World News Tonight
Kennedy Krieger's Autism Programs featured in FOX 45 "Cover Story"
My notes aren't great, but I'm sure some of you are reading this and wanting to know what these early signs might be. I'm going to give a really simple description of the study, for fear that I'll remember some detail of it wrong. She started with a large group of babies and visited them at six months. I believe half of them had siblings with Autism. They took data and made observations about the children at six months. They watched them play with toys, play peek-a-boo with mommy, etc. She (or a member of her team) then met with each child again at 14 months, 24 months, and 36 months. Thirty-six months is kind of the gold standard. By that time you pretty much know if the kid has an ASD (Autism Spectrum Disorder).
They were then able to go back and evaluate the data they had collected for the children who ended up later being diagnosed. At six months one of the distinguishing factors was head lag. When your baby is laying on his back and you hold him by the hands and pull him up to sitting position, if his head doesn't come up in line with his body, and if it stays on the ground and bends back as you pull up, that is head lag. She said that the social domain of children she observed at six months who were later diagnosed with ASD appeared rather intact, but what they did observe was the following:
- high degree of passivity
- some delay in milestones (babbling, motor skills)
- poor postural control, atypical movements (these would differ from child to child, but might include odd gestures or body movements. This would include head lag. When Franny was six months she used to like to kick only her right leg in the bathtub. It was incredibly cute. I'm not saying that was a sign, but it could have been. She also used to rotate her arm while she nursed and kind of stroke my shoulder every time it came around. That was really cute, too.)
- In a challenge task, the differences were more pronounced. She described their behavior as "sticky." I think what she meant by that was an unwillingness to divert their attention away from some fixation. For example she showed us a clip with some children who were a couple feet away from a toy that could light up and play music. The kids had strings attached to them so that anytime they moved it would manipulate the toy. Dr. Landa showed us some videos and the kids who were neurotypical had joint attention- looking at the toy, then the adult in the room, then back at the toy, looking to share the experience with that adult. The child with the ASD however, found the strap that attached the string to her leg and became fixated on that, not at all interested in the toy or the adult in the room.
- social frequency of ... (oops. Whatever it was I missed this. It had to have something to do with joint attention.)
- diversity of consonants
- stereotyped pattern of interests and behaviors
- initation of behavior regulatory acts
- diversity of gestures/consonants
- frequency of triadic gaze
- initiation of joint attention
The other plus about finding out early is at least you can get your kid's name on the waiting list earlier than you otherwise might. So often, by the time we as parents are ready to act, they want services for their kids LIKE NOW and parents are being told that the waiting list is a year long.
Anyway, I hope that helps someone out there or someone finds it interesting to read. I found it completely fascinating. Oh and I almost forgot.
When Dr. Landa finished speaking, I leaned over and asked Melinda (Franny's consultant) a question about the presentation. She said, "We're having lunch with Dr. Landa today. Would you like to come." I was like, "uh... let me thing, YES!" She said, "I'm not sure where we're going to go." And I said, "I don't care!" We could have gone to Taco freaking Bell for all I cared. I felt so privileged to be there. I was so excited I almost couldn't concentrate in the next session. When we arrived, Dr. Landa was sitting next to Dr. Stroud, who diagnosed Franny with Autism. I've always said that if I had to have someone tell me my kid has Autism, I'm glad it was her. She is so kind and generous and just a wonderful physician. Then of course Melinda and some of her colleagues, including Natalie* who used to work with the kids here in Kirksville and now works where Dr. Landa works at Kennedy Krieger. And also Matt Stoelb who I've been hearing about for years now but never had the chance to meet until that day. Matt was kind of overseeing Franny's case when we first started with First Steps when Franny was 2 1/2. I was kind of obsessed with finding another Mom who could tell me something other than, "I wish I could tell you it gets easier..." or "You just to wait until you can accept it." I wanted something more than that. I wanted someone to give me hope. Through my friend Jordan, I found a girl who's son had Autism. They lived in Columbia and Matt worked with him there. She told me he was an intregal part of her son's recovery plan. Which is obviously how I feel about Melinda. It's so interesting to go back and read that email for the first time since she sent it two and a half years ago. I remember so desperately wanting to be able to say the same for my kid that she was saying about hers, and we are really getting there. It really feels like witnessing a miracle. Anyway, wow. Talk about getting off on a tangent. Yikes. Back to the lunch. It was incredible to be sitting at that table with so many people I respect and admire. I was the only parent at the table. There was no reason I should have been there, but I'm so grateful I was and so grateful that Melinda invited me. It was funny, Dr. Landa asked me about Franny's diagnosis and treatment, so I briefly described how old she was when she started ABA at our home with Melinda at 2 1/2 and then received the diagnosis at 3 from Dr. Stroud. It was so weird to be able to reference Melinda and Dr. Stroud sitting right there at the same table! I was like, "it's so nice to have you all here!" :)
*Franny had the opportunity to be part of a study that Natalie conducted at the preschool on joint attention. Natalie presented on this study at the conference and I along with two of the other mothers were able to go. Natalie of course gave all the children fake names. Franny's name was Emily. It was so weird to hear people talking and asking questions about our kids, obviously having no clue the parents were in the room. But also kind of cool. I just sat there thinking how lucky I was (and Franny) that she was able to be part of that study. That was a huge step in Franny's recovery, I believe. I was telling Natalie that it was about that time when we were driving home from school and Franny said, "Mom, look, a tree!" I said, kind of distantly, "Mmhmmm... yeah... " then I turned my head and shrieked, "wait, WHAT?!!!" Awesome. I didn't realize it right away, but we weren't used to hearing her say things like that. People have no idea how huge joint attention and just how important it is. I surely didn't.
Tuesday, April 7, 2009
Tonight I asked Franny not to burp at the dinner table, because it's not polite. She asked in reply, "How do I not burp?" It's a valid question.
We spent General Conference weekend in Kansas City at Wes and Jen's house. (Wes is Bobby's brother.) We had a great time as usual. The kids played Conference Bingo. I did some knitting (which is my obsession du jour) while I listened to the speakers. Jen made me maybe the best salad ever and some fabulous strawberry desserts. (We collaborated and invented a new dessert: Strawberry and Banana Shortcakes with Homemade Vanilla Pudding.)
We were able to see my Nicole's first soccer game, where she scored a goal in the first five minutes! I was so impressed with the way they handle the games. They don't keep score and only three kids play on each team at a time. The kids get lots of attention, feedback, and encouragement and they learn so much about playing on a team. I think I want to get Franny into T-ball now. I hope they run the 4/5 year old teams in a similar way here. It was so windy and cold. Luckily we had wind-resistant coats and lots of blankets and hats made by my grandma.
Then on Saturday after the first session we were able to go to Deanna Rose Farmstead or something and see some animals and play at the park. Sophie really loved feeding the goats. There was a baby lamb I fell in love with, and I petted the fluffy rabbits even though the signs strictly prohibit it.
Sunday the kids did so well watching the first session of conference. They loved Jen's Bingo game. We ended up staying another night and left early Monday morning. We stopped at the Liberty jail. I hadn't been there since Bobby's mission homecoming and so obviously the girls had never been either. We were told while we were there that 170 years earlier, on April 6, 1839, the prophet Joseph Smith was released from the Liberty jail. We thought that was pretty cool. When our tour guide finished up she sang "I Know That My Redeemer Lives." She had a beautiful voice and I love to hear that song because it was my Mom's favorite hymn. She offered to take this picture for us and after we left Bobby asked if he could go touch "the rock." She said yes, though we're both pretty sure she didn't know what she was saying yes to. I stood there with my mouth hanging open because 1.) I couldn't believe he asked her that and 2.) I couldn't believe she said yes. He was off like a kid in a candy store and he jumped down inside the display so he could feel the original floor of the cold basement where the prophet Joseph Smith and his men were kept without cause for about four months. The sister missionary told us later it was against the rules and even she had never been down there. Well, Bobby's a bad boy but I still think it's pretty cool he got to stand on the same floor that Joseph Smith stood on.