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Sunday, September 16, 2012

Participating in Research Studies

Bubs 2's "brain cap" is made
up of magnetic sensors and
saline water
Bubs 1 chillin while his
brother participates in
We got up early, yesterday, and headed to Yale University's Child Study Center. Both Bubs 1 and 2, Mom, and I have done this trip a few times before, because Bubs 2 is the subject of a study. The research he participates in will hopefully help kids, like his brother, who sit on the autism spectrum. More specifically, he is participating with "...early detection of autism in infants; studies of basic mechanisms of socialization such as babies' preferential attention to the eyes, gaze, and voice of others..."

Bubs 2 has no autism spectrum diagnosis (yet and hopefully never), but he qualifies for this study because his brother, Bubs 1, is on the spectrum.

Bubs 1 and I ran trucks like
these up and down the
hallways at the
study center.

We decided to include Bubs 2 in the Yale study, because we wanted to learn more about Bubs 1. We also wanted to have early intervention for Bubs 2, in case there is anything going on with him. In addition, we felt that having access to as many resources as possible could only position us in good company as we learned more about Bubs 1.

 As part of this research study, Bubs 2 gets to where an electroencephalographic "brain cap," which he wears while watching videos. He's a good little participant. Wearing that cap doesn't seem to be uncomfortable for him. It's basically a bunch of small, magnetic sensors that fit around his head. Nothing sharp. However, it is wet. There is a saline solution that apparently allow the sensors to receieve his brain waves more easily.

Bubs 2 participating in research by
donning a "brain cap"
While down at Yale yesterday morning, we were informed that the Child Study Center happened to be hosting a get-together for the families involved in their research, staff and faculty included. Although Bubs 2 was a bit tired from all his research activities, we still attended. He eventually fell asleep while we hung out in the Center's courtyard, meeting many individuals associated with the study. As I held Bubs 2, his mom and I watched Bubs 1 enjoying himself while he played with other the kids in the courtyard. There were bubbles (a very cool bubble machine), bean bag tossing, face painting and animal-shaped balloons. The members of the child study team greeted us warmly. They thanked us for Bubs 2's participation. We, Bubs 1's mom and I, found ourselves unexpectedly relaxed while watching Bubs 1 play with the other kids.

Cool toys for siblings who wait
We felt a membership with this group of people even though it was the first time that we had met many of them. We met the faculty member who is leading the study that requires the  electroencephalographic cap. I told him how much my wife and I were enjoying our visit there. As a rule, we are usually never that relaxed when Bubs 1 is playing with other kids. As I mentioned in a previous blog post, we never know when the bubs will need our help. The faculty member, Jamie, said that we were surrounded by individuals that have been working with ASD kids for many years. When Jamie said that, I felt some invisible weight fall from my shoulders. It was subtle, but noticeable. I wasn't aware of the amount of stress I was under when simply watching Bubs 1 play with friends. 

This experience also helped me revise my current approach, when working with Bubs 1. No more getting over-aggravated with him. No more expecting him to behave like the other kids. I know that this sounds silly, because we've read and have been told that Bubs 1 will operate differently and that our window of opportunity to help him jump these gaps (of social challenges) is now. I was allowing this stress to build. This gathering, along with Bubs 1's occupational therapist, has been supportive in my efforts to rethink my change in working with the bubs.
Bubs 2 even scored some
Puffs treats for his

My focus is getting healthier. I no longer want to continue to build the stress, which has been weighing me down. In the larger picture, Bubs 1 is very lucky. There are many other kids much deeper into the spectrum than he is. Bubs 1 is just on the border and his challenges are repairable. He is in a preschool where the teachers and staff are well aware of his needs. We, his mom and I, have learned about how to "work" with him at home for his sensory needs. The latter is where I've been focusing more on.

In addition to suggesting gum chewing, Bubs 1's OT suggested that we also provide sensory stimuli when helping him redirect his behavior. So, I tickle him now. It's changed how the bubs decides to follow his mom's and my direction. He's more willing to do what we say if we tickle him while reinforcing our direction. He laughs and laughs while yelling "no." Then when the tickling's done he gets up and does what he's been told to do. Simple.
Little does Bubs 2 know, how much his participation is helping his family members, especially his older brother. One thing is for sure, it is helping his mom and me to be better parents for them both.

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