Colby

Just a Minute

Sometimes you are minding your own business, when a split second encounter sneaks up and threatens to knock you off balance. Two pretty girls, shopping at the grocery store before heading off to college, catch a glimpse of your handsome 21-year-old son. At that moment, he is standing still and straight – not walking in his signature jerky gait, elbows flapping at his side … not biting the back of his arm in frustration because he can’t verbalize the thoughts in his head … not flicking his wrists back and forth in rapid-fire motion. For that moment, those two girls see him as a potential date, a potential boyfriend, a potential husband. And just for that moment, an entire parallel life for him flashes before your eyes.  

He starts walking; they realize the situation; and you scramble to regain your balance.  

Moment over. Ever onward! 

Disney Theology

From the day he was born, Ms. Nita was part of Colby’s life. She came in twice a week to help us keep our house tidy … but more importantly, she helped us keep our hearts happy.

When Colby was diagnosed with autism at the age of 17 months, Ms. Nita became friends with the parade of therapists who came into our home over the next decade. Although not a computer savvy person, she learned to trouble shoot his Dynavox machine that “spoke” for him, giving him a voice for the first time at age six. And she rejoiced when he finally spoke clearly enough for us to understand some words at age eight. She cheered every skill and championed every effort.

When Ms. Nita died suddenly, I struggled with how to explain her absence to Colby, who still, at age 20, has huge gaps in his understanding of language and his ability to use it. For the first time in his life, his Monday and Wednesday afternoons would have a Ms. Nita-shaped void.

Her kind daughter allowed us to have some private time in the funeral home – with Ms. Nita in her casket.

We approached the coffin cautiously and Colby gazed at his beloved Ms. Nita for several minutes. Wanting to be sure that he didn’t confuse “death” with “sleep,” I encouraged him to touch her hand. He patted her repeatedly and finally announced, “statue,” with a questioning look.

I jumped on that concept with a great sense of relief. “EXACTLY, Colby, she doesn’t need her body anymore so all that is left is like a statue.” I rambled on for a bit about her leaving her unnecessary body behind as Colby stroked her hand, occasionally murmuring, “statue.”

Thinking we had managed to get through a tough situation relatively well, I started to ease us out of the room.

Colby, however, was not through. He plopped himself down on the loveseat at the end of the casket and stared off into the distance.

All of a sudden, he snapped to attention and proclaimed, “LIGHTNING!”

Drat.

I knew exactly what he meant.

“Hercules?” I asked, and he nodded enthusiastically.

Like many on the autism spectrum, Colby is a Disney aficionado, with an uncanny recall of every scene. Like most parents of kids on the spectrum, my Disney knowledge has been honed by thousands of hours in front of a shared screen.

I knew without a doubt that Colby was waiting for a lightning bolt … the same sort of lightning bolt that struck the Zeus statue in Hercules, bringing it to life.

Laughing out loud, with tears in my eyes, I knew Ms. Nita of all people would appreciate his Disney theology -- and love his plan to bring her back.

Conversations with Colby

I had an amazing conversation yesterday with Colby, who is closing in on his 20th birthday.

We were on a Saturday afternoon drive, a favorite pastime of his. As with many on the autism spectrum, Colby struggles with language. His preference is that we remain silent during our rides. He reminds me of this preference by firmly clamping his hands over his ears whenever I get chatty with him.

But out of nowhere, Colby gave me two back-to-back sentences.
“Flock of birds” - while pointing to the sky to show me the hundreds flying overhead. “I hear drum” – while pointing to the radio.

He was not asking for anything with those words. He was simply offering the opportunity to share in what he was seeing and hearing.

What a gift that his pleasure in an experience can, at least occasionally, now be magnified by sharing it with someone else!

Stop!

I love this picture.

Colby at a stop sign. Let me clarify. Colby STOPPED at a stop sign.

Stopped.

Waiting.

Waiting, unasked and unpromted, for me to catch up with him.

Wandering is a huge problem for the autism community. Last month, Liz Feld, President of Autism Speaks, reported that 50% of those living with autism are wanderers. Since 2011, 42 people with autism have died because of wandering.

As a child, Colby would walk for miles and never look back. He simply took off – and we scrambled after him.

Applied Behavior Analysis (ABA) therapy is not just used to teach shapes and letters. ABA can be used to teach almost anything … including the process of stopping and waiting. I am so grateful for the wonderful therapists who practiced with him, over and over, gradually increasing seconds of time and inches of distance.

This picture represents a skill that I once thought Colby would never obtain, a skill that I now almost take for granted.

Almost …

My Favorite "Favorite Thing"

And he did!!!

His favorite THING! Not based on the category (color, food, movie) that was named. Not based on a set of options. Not based on any prompts from her.

His FAVORITE thing. I know because he makes a beeline for it whenever we go to the mall. Which is quite often!

HIS favorite thing.

An escalator.

And now it’s MY favorite “favorite thing.”

  • Until you start trying to teach language to someone with a limited repertoire, you can’t fully appreciate how often standard conversation relies on the old stand-by of “what’s your favorite ….?” Especially when we are talking with kids. “What’s your favorite color?” “What’s your favorite food?” “What’s your favorite movie?”

    For my son, Colby, conversation remains a challenge. Diagnosed with autism at 19-months-old, Colby, who is now a hulking 19-year-old, has spent years working diligently to build those skills.

    Over those years, he has learned, through painstaking practice, to answer the “What’s your favorite ….” questions. The only problem is that I know he was never really expressing a favorite – just an answer. During one stage, he was bombarded with purple items based on his answer, but he gravitated towards orange when left to his own devices. He has articulated a long string of favorite foods, many of which he has never eaten. His favorite movie always tends to be whatever preview he has just watched.

    How do you explain “favorite” to someone with limited language? Any visual aid limits the possibilities to whatever you present … narrowing the world down to a field of a few choices.

    So now you may understand why this small moment is extremely cool for me.

    Colby loves to visit the mall with his beloved therapist, Tammy, to have scavenger hunts to find various items on her list. He is learning to take photographs with his new phone so Tammy incorporated that process into this week’s scavenger hunt.

  • 1. “Take a picture of the mall entrance.”
  • 2. “Take a picture of the numbers on the inside of an elevator.”
  • 3. “Take a picture of something you could give as a Valentine’s gift.”
  • 4.“Take a picture of your favorite thing in the mall.”

More Car Talk

“Cars behind,” declares Colby as he peers into the side mirror of our Dodge Magnum on our nightly drive, and I nearly let go of the steering wheel to clap for joy while cheering, “Yahoo for you!!”

That statement is the culmination of years of work to gain an array of skills:

· He is paying attention to his environment, noticing what is going on in the outside world.
· He is making a comment, engaging in conversation for its own sake rather than simply communicating a need.
· He is using a preposition, one of those tricky word types that make only rare appearances in Colby’s language.

Always hoping to push him a little more, to lengthen our brief conversations, I counter with a question meant to elicit a few more words: “Colby, HOW do you know that cars are behind us?”

His answer is pure Colby: “Window ears!!”

Yet again Colby has forever changed my world view. Side mirrors will now always make me smile.

Language Lessons

Language came late to Colby. Nonverbal until the age of 8, 18-year-old Colby still struggles to transition the contents of his mind to his mouth. Syntax is slippery; tenses, tricky; pronouns, preposterous.

However, Colby has laser-sharp clarity about his word preferences. For unknown reasons, he has certain words he adores and others he abhors – and he is on a one-man mission to persuade the rest of us to join him in the “correct” vocabulary selections.

For example, Colby does not like the word “good,” strongly believing that “great” is the better choice. He is on constant vigil to correct everyone around him. Anyone greeting Colby with “Good morning!” receives a firm “GREAT morning!” in return. A congratulatory “good job!” is quickly countered with “GREAT job!” If someone across a crowded room remarks “Good to see you” to a friend, Colby jumps in with “GREAT to see you.”

Another of Colby’s targets is “try.” Whenever I say, “Yes, we’ll try to do that,” he admonishes me with a Yoda-like 

“NO TRY!”
“We’ll try to go to Disney World.” “NO TRY!”
“We’ll try to find those cookies at the store.” “NO TRY!”
Colby has never seen a Star Wars movie … but the force must be with him as he truly embodies Yoda’s counsel on a daily basis: “Do or do not – there is no try!”

Colby is also working to rid the world of “or” and replace it with “and.”
“Would you like to go ride around the block or go to the store?” “AND!”
“Do you want lasagna or spaghetti?” “AND!”
He does not limit this correction to choices in which he wants both options. He slips it in whenever “or” is used, particularly as he pulls information from his beloved Wikipedia.
As he points to the words, I obediently read, “Bears are classified as caniforms, or doglike carnivorans …”
“AND!”
“The rainbow effect is also commonly seen near waterfalls or fountains.”
“AND!”
When he reads aloud himself, he translates every “or” as “and” without missing a beat.

I have to admit that, under Colby’s round-the-clock tutelage, I have come to realize that “or” truly can be replaced with “and” most of the time. Those two separate Venn diagram circles can often be seen as “A and B” as easily as “A or B.” The perspective is one of expanded possibilities rather than limited ones.

Colby’s responses are remarkable in their velocity, consistency, and persistency. And his conditioning has been so effective that I now hear his voice in my head.

Which is, perhaps, the point. Maybe Colby is working to make some changes in the way I connect my thoughts and words.

“GREAT,” not “good”; DO, not “try”; “AND,” not “or.”

Colby’s lessons are certainly ones I need:

  • aim for the best rather than settling;
  • give enough effort to make things happen rather than simply voice a half-hearted attempt;
  • see the world with all-encompassing, inclusive eyes rather than through a narrow, exclusive lens.

Good lessons for me to absorb.
I mean, GREAT!

I do need to consider my word choices more carefully or at least think about how words impact my view of the world.
I mean, AND!

Ok, Colby, I’ll try.
DRAT! I have a long way to go!

Car Talk

“A circle has corners,” Colby announced yesterday on our routine evening drive.

“I don’t think so,” I replied, having learned not to take a hard stance with him until I have more information.

“A circle WITH corners,” he ventured.

Colby’s vocabulary is heavily weighted towards nouns. He takes a loose approach to verbs, prepositions, and conjunctions, shifting them around until he gets a phrase that people will accept.

Feeling fairly confident, I went ahead and took a position: “A circle does NOT have corners, buddy.”

“CORNERS with circles,” he tried. He also takes a loose approach to the order of words.

As his anxiety level rose over my ignorance, the knuckles on his left hand crept towards his mouth. As a 17-year-old, Colby has the knuckles of a 87-year-old man. Years of biting himself have resulted in big, knobby arthritic-looking knuckles, covered in callused tissue.

I paused, trying to come up with a way to shift subjects. A ridiculously hopeful thought, since persistence is a hallmark of Colby’s autism.

“Corners HAVE circles,” he declared, looking earnestly into my eyes. Although eye contact is still difficult for him, despite years of “look at me” practice, he can give soul-searchingly deep eye contact when he is trying to make a point.

I was stymied. While Colby has huge gaps in knowledge, he has been solid on shapes since he was two. In the years of therapy when he was unable to speak any intelligible words, he was always able to recognize and point to a circle vs. square vs. triangle, receiving tiny pieces of gluten-free cookies as a reward.

Hoping for more clues, I said, “I don’t understand, buddy. Tell me more.”

With an impatient sigh befitting a teenager dealing with a mother who just doesn’t understand, Colby pointed to a road sign.

Oh. Now I get it.

“That’s called rounded edges, Colby. You are right. The corners are pieces of a circle.”

His smile lights up the car. Once again, he has taught me something.

My smile is pretty big, too. After years with no words, I am always grateful for a conversation with Colby.