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
research

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
participation.

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.

What Does "It" Look Like?

Bubs feeling the shells under his feet

 There are many times when I think that Bubs 1's PDD-NOS diagnosis was/is one big mistake. These times come when I subtly observe family and friends observing him. These times also typically occur within intimate environments, where the bubs is quite comfortable. He operates like a neurotypical kid in these spaces - most times. He also is on his best behavior in front of new people in these intimate spaces. He loves new people. It's amazing to watch him perform. It tells me that the bubs understands what his challenges are, but doesn't want people to know about them. He wants to fit in.

Don't we all.

There are also times when he's overwhelmed and can't hide his social challenges, whether or not new people are present. There are also times when he seems to be aware of his crowd and isn't concerned with acting out. I know, it sounds like a normal toddler. I heard people say this too. I mention an ASD characteristic and somebody responds with the could-be-just-a-normal-kid reply. I hate those responses and they usually come from people who have little knowledge of toddlers and even less knowledge of autism.

I was the first one to say that the bubs was normal, when his teachers said that we may want to consider having him evaluated. I also knew that there was something going on with the bubs. It was inconsistent and subtle. The parameters weren't linear.

To imply that the bubs mom and I just said "ok" when advised of the likelihood that he was on the spectrum, without questioning it, dismisses our credentials.

bubs first camping trip

Last July, when Bubs 1's autism was diagnosed, the evaluator commented that if there was to be a diagnosis there that it was going to fall near the border of the spectrum. He even used a baseball analogy of the uncertainty of a base hit down the third base line until it falls. His evaluation was thorough. Bubs 1's mom and I recognize it as legitimate. Even Bubs 1's pediatrician commented on the thoroughness of the diagnosis.

The diagnosis is now a side bar.

Bubs 1's mom and I are focused on learning about this spectrum. Bubs 1's mom will have him involved with a university study soon. We'll even get another evaluation as part of it. Bubs 2 too. He's in another study. Autism can strike twice in one family.

On the subject of learning about ASD, what I found out this past weekend is just how invisible this level of autism is. Within the setting of our home and other intimate environments, Bubs 1 is just another three-year-old boy walking, running and talking with his family and friends. Typical toddler ostacles too, i.e. learning to share and eating all his veggies. Bubs 1 can fool most people of his spectrum disorder if they did not know what to look for.

However, I see it and so does his mom.

bubs running the boardwalk

While camping in the backyard of a friends home this past weekend, the bubs was involved in his first camping experience. There were many other kids too. Parents and kids combined. The bubs seemed overwhelmed with it all. An event that stands out most in my mind is when one of the parents provided all the kids thin, wood-glider airplanes to play with. It was a very nice gesture. All the kids were throwing their gliders into the air and then chasing it down when it landed. I remember looking over at Bubs 1. He was sitting there crying. On his knees he began smashing his airplane into the ground, repeatedly. All the while he cried out, "My airplane is broken. It won't work!" He seemed to have stunned a few other kids with his behavior. I overheard one ask another, "What's wrong with him?" Most of the kids gathered around him and a few even tried to console the bubs. "Look," said one kid, "mine's broken too." She was trying to show him that it's nothing to cry about. Unfortunately, it didn't work. The bubs just cried louder.

This is an example of where I saw the autism, but nobody else did. It was subtle. It was almost invisible. Yes, many toddlers have meltdowns like this. However, as I mentioned earlier in this post, I know the bubs and it was different from his normal meltdowns. I noticed "something else" operating there.

Bubs with his cousin

To help him, I broke out some neon wrist bracelets that I brought from home. I asked him for his help. He noticed the neon pictures on the label and quickly obliged. We cracked, shook and connected the ends to form bracelets for each neon straw. I gave the bubs a handful and told him to give each of the kids a bracelet. He did. Bubs 1's mom learned this about the bubs. Just give him a task and empower him, she discovered. He loves to take control of his own actions. He loves to tell me, "I'll do it by myself, daddy."

It was great to watch him run around handing out a bracelet to each kid. I was aware that the bubs was likely feeling sensitive to crying in front of the other kids earlier. This task helped him regain some respect from his peers. I could tell this by the look in his face as he handed out the bracelets.

Some of the other parents helped us, but one couple didn't. In fact, they were pretty transparent about their feelings. They never came out and directly said anything, but their body language told the whole story. Face expressions included. What this couple didn't see, could never be explained to them.

bub's first tent

I had to let them go.

What I saw in the bubs was a kid who wanted to play with his friends, but struggled to navigate the social space due to overwhelming stimulus around him. He doesn't like it when kids laugh at him and he's very sensitive to ridicule. Thankfully, these kids didn't laugh at him. And most were even helpful. The bubs had a couple of other breakdowns later, but they were just par for the course. I knew that he worked hard to overcome his challenges. I knew that he didn't choose to be overstimulated. He worked very hard that night to be like the other kids. He did a damn good job too.

I was very proud of him.

My job is simple. Help the bubs learn to operate in groups according to mainstream standards, while also letting him know that he is perfect the way he is. Simple, but not necessarily easy.