So….I’m not quite sure why- but I’ve been avoiding blogging since we returned from Louisville. I know I wrote while we were there, and I was reeling from the news of the school shooting. I still am.
But it just seems every time I sit down to write about our experience with Dr. Mervis and her team, I just can’t put into words what I want to share. Very rarely does that happen.
|I just adore him.|
There it is, the reason for all of our worrying, all of our concern, discussions of the future- that little jack o lantern of a face that we somehow are lucky enough to see each day. And he had not a care in the world. In fact, quite the opposite. He had so much attention throughout the research process that he was in his element. He was able to play with new toys, look at new faces, and spend ample time with his Grammy and Pappy who ADORE him and shower him with attention. What more could he ask for?
As I mentioned before, Dr. Carolyn Mervis does research at the University of Louisville and she focuses on further understanding “cognitive, language, and social development in the context of intellectual disability and in typical development.” Several other families we have come in contact with the Facebook support page and through a list serve have also participated and most have been happy with their experience. We figured it would be a chance to talk to someone who really knows more about what makes our little guy tick. And even more importantly- we hoped to gain knowledge on how to better support him and his development. Of course, secretly, at least for me- I hoped that we would hear that he was the ultimate rock star in the world of 18 month olds who happen to have WS. Hey, the geneticist said he was one of the best cases she had seen when she diagnosed him back in May- so it wasn’t that much of stretch….
|How can he not be a rock star with a mom like this? Jeesh.|
Well, he was not referred to as a rock star, but the best news we received was that “Evan is doing at least as well as the average child his age with WS.” She made sure to emphasize that any delays he might have in comparison to a child who is typically developing- are completely within the “normal” range for WS. As much as I am growing to dislike the words “typically developing,” I was glad to hear that he was doing well considering his late diagnosis and delayed therapies.
She was able to determine that conclusion based on several different tests and observations. On the first day, Evan went in a room with two students who used the Mullen Scales of Early Learning to determine his current level of development. While that was going on, Todd and I went with Dr. Mervis to her office to discuss how the days were going to unfold and also to help her fill out list of questions based on Evan’s communication habits. We also filled out several releases. She explained the whole process and as we went over the communication questions, she gave out nuggets of information while we feverishly took notes. Nothing was necessarily shocking or earth shattering but nonetheless helpful to Evan’s progress. She explained that he was going to be used in another study that takes a look at how babies with WS process faces. He went into the “Baby Thinker” with my mother in law and she held him on her lap for the test. While we were sitting there talking to Doc Mervis (as Todd likes to call her), she received a call from one of the students saying that Evan was extra squirmy. Yep, sounds like him. But he was very good for Grammy and sat through the whole test. They showed him pictures of faces and they videotape him to see what his reaction is, and which faces hold more interest for him. Apparently he was more interested in the female faces, and when they flipped the faces upside down, he could have cared less. I found that interesting because sometimes when playing he will flip his own body around so that he can look at something from the bottom. Not sure what it all means, but it’s not really to convey information for us anyway.
|He does love his grandparents (all of them!)|
Because the morning was tiring for Evan, he was exhausted and ready for a nap. So Todd and my in laws took him back to the hotel while I participated in a psych interview. They are doing a study on the mothers only because Dr. Mervis said there are not enough men who come with the families so the sample size would not be valid. This interview was far more difficult for me than I had expected. I thought it was just going to be questions about what it is like to be a mom of a child with special needs. That was only one small part of it- the rest of the hour was spent answering intense personal questions about my background and experiences. And of course, since I am honest to a fault, I opened up and was as truthful as possible which can be hard. I felt like I had been hit by a truck when it was over. Thank goodness for Grammy and Pappy, they took Evan for a walk in the stroller, while Todd and I napped for a short while.
Friday was another busy day. I went into a room with one of the students and Evan sat next to me while she sat across from him. They completed a CSBS which included several little activities they tried with Evan while he sat in a high chair. Todd and a speech therapist sat on the other side of the two way mirror so he could see everything. It was hard for me, because I couldn’t really interact with Evan unless he initiated it. If he looked to me for help or interaction, I could, but otherwise I had to be really quiet and just be present if he needed me. The funny thing was, I felt like he wasn’t accomplishing all the things they were looking for- and Todd said he felt differently on the other side of the wall. The speech therapist seemed happy with many choices he made and actions he took. That is sort of telling of how hard I can be on myself, bc the whole time I was taking it personally that he was not looking to me for help, or using the bowl and spoon properly during the test, but in reality, he was doing far better than I thought. I need to chill. Lesson learned.
To be continued….the little dude is waking up from his nap……