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.