Archive of ‘Newtown shooting’ category

The Putmans Take on Kentucky! Part 1

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.

You didn’t have to agree quite so loudly.
Before I go into it, I want you to see what greeted me in the car at the finish of the experience with Mervis and her team:

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?

And luckily, we got a lot out of it too.  

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.

Chill Mommy!

To be continued….the little dude is waking up from his nap……

My Heart Hurts

Yesterday, on December 14, 2012, a horrific mass shooting occurred in a small, unassuming town in Newtown, Connecticut. This unthinkable event has America collectively weeping, shaking their fists, and screaming at the injustice. It only takes a few minutes of reading through the News Feed on Facebook or reading any comments on articles on news sites to see how this has rocked our nation. I know my blog was not created for social commentary but I cannot move past this day without marking it down and making sure that I remember it, and how it made me feel.
I tend to be a person who walks out into the world without thinking of the evil that can lurk behind each corner. I drive my car blindly, trusting that the person in the lane next to me will stay in her lane. I walk into banks late at night to do my ATM transactions, thinking for a moment that it probably is not the best time to do so, but the odds of something bad happening are so small, why worry over it? I have used Patco with my child, using the Camden station, with only a small amount of healthy caution that I would use at any public transit stop. Even though I have met stares of disbelief when I mention I have taken Evan on the train, and by myself???!! Typically I chuckle to myself internally and think, ‘Ah, how it must be tough to live in that type of fear.’ So glad I do not.
Unfortunately events like today pierce that bubble of security within me in an instant. I feel like a fool for feeling safe when it is possible for an individual to take the lives of 20 children in minutes without anyone being able to save them.  My husband could tell I was taking this very hard today, and my mind was elsewhere while we were driving. He kept trying to make commentary on the scenery, to lighten my mood. I could tell he was trying very hard, and I apologized for being lost in thought and explained why. He told me to try not to focus on it too much, that it is a horrible, horrible event, but that we cannot control others.
I know he is right. That is my typical response when tragedy strikes at the hand of another human being. There is Evil in this world, but we cannot be consumed with that fact or we will not be able to live our daily lives.
But for today, for this morning at 2:51 am when I sit in a Kentucky hotel lobby, frantically searching for some sense of peace to hold onto, I am focusing on it. I feel I must. I must be reminded of not only the evil that does lurk within this world, but more importantly, the fragility of life. I feel thankful that I know life does not end on this Earth. That the beautiful, innocent children and the adults who took care of them who lost their lives are living their second chances in Heaven. That belief, and my faith, however challenged it truly is right now- are keeping me afloat in a sea of confusion and doubt.

Driving home from the second exhausting day of Dr. Mervis’ research study, we drove past many gorgeous old homes in Louisville, KY that were ready to be lit with twinkling white lights and had wreaths on each and every window. My heart sparkled for a moment, remembering how exciting the Christmas season is. I still get that rush of joy and pure happiness that I did as a child during this month of celebrations, surprises, and family. It is not as pure anymore, tainted by life experiences, knowing the materialism that comes with the holiday, etc. But I feel so incredibly blessed to have had the holidays I did as a child, and I realized with a jolt that those children had that opportunity stripped from them. Hopefully at their age they had a few years of memories, but now their families are left with gaping holes and searing pain and sorrow.
 I thought immediately of my son, Evan, asleep in our backseat. I thought of his future, of his potential to see no race, to lack the social cues and understanding to know why he should not love everyone he meets. My eyes burned with unshed tears, and I fought back the impulse to lose it all together. I felt guilt at how I had been feeling just a few minutes earlier in the exit interview with Dr. Mervis. The words “typically developing children” were used over and over to show comparison with Evan. I have typed those words so many times in IEPs and I just felt so frustrated and pained that now my son will be the subject of that comparison and I will be reading those words and they will not refer to him. They will refer to my friends’ children, to his classmates, but not to him.
And I felt horrible guilt that I was bothered by that when 20 families were receiving word that they will not be able to take home their child that afternoon.
I picked up my sleeping son from his car seat, and sat with him in a dark hotel room, while he clung to me, asleep and exhausted from the assessments that day, and a lack of nap. I thought of his incredible smile, how it immediately captures your heart, no matter who you are. I couldn’t help but let myself imagine what it would be like to learn I had lost him. And it felt like a knife was turning over and over again in my chest.
My internal fists started to shake at the universe. Who cares if he is not “typically developing?” I know it is human to have those moments and I will not beat myself up over it (well at least not for much longer). But to waste time over words, when I have this living, breathing, example of pure love sleeping in his ‘pack and play’ right now, just seems disrespectful to the families who have lost their loved ones. If they had one more night with their child, with their mom, their dad- they would not waste it worrying about words on a paper or words being spoken in a research lab.
And I realize that is all I can do right now. Appreciate what I have and keep trusting. Keep using Patco from Ferry Ave with my healthy sense of caution. Keep driving down the highway trusting that the cars around me will follow traffic law. What can my worry or fear do for me? Nothing that is helpful or honoring to those who are no longer with us and their families who grieve. I will continue to love, continue to trust, continue to believe. It is the risk I must take as Evan’s mother.

I will sum up our trip and the helpful information we received from Dr. Mervis and her team- probably sometime next week. Please know that my issues with the terminology being used to describe Evan’s progress are my own personal hang ups from being a special education teacher for over ten years. We had a really wonderful experience down here and I think Evan’s progress will be enriched by the information we gathered. I just wanted to include my thoughts from today because I feel it is important for me to remember this, and have it to reflect on in the future.