Clouds, May 2010

Clouds, May 2010

Tuesday, July 1, 2014

thought you should know

Some time near the age of 5, one day, Hayden was walking around with his "bucks"-- (totally normal, he is always hitting people up for cash--) & at one point he kept saying that he needed two.

I knew he already had $5 in singles, & he sure did not need to run around with $7, so I was not exactly responsive to his request for more.

However, he was certainly persistent & gradually became more determined (to put it kindly)... "need koo!," he kept saying. (The "t" sound came out like a "k" sound.)

Finally I looked at the cash he was holding & sure enough he only had $3... hence the reason why he was looking for "koo" more... which got lost who-knows-where.

But the point is, this is how I learned that he does have the ability to count.

I may have already mentioned that story in a blog post somewhere along the way over the years... but any time I am offering an example of how people with fragile x syndrome (my son included) sort of mask their own knowledge... how they are as much incidental learners as they are incidental "revealers", if you will... the scenario with the $5 is usually my go-to story.

Hayden is also a visual learner & a sight-reader, so he knows what his written name looks like & can identify it. He has a pretty impressive "sight word" vocabulary... but he does not yet read in the traditional sense of sounding a word out.

Although, this has been a strength of his for a long time. Even before Hayden had expressive language, I remember his former teacher telling us that he could pair up a classmate's written name with their corresponding class chore-- both simply spelled-out on labels which went on the class job chart.

That was a pretty huge accomplishment.

The other popular perspective I offer is something that happened when he was also kindergarten-age (that was a truly breakthrough period of time-- with speech, too)...

You see, someone who used to work with Hayden (not for very long) once said, "I don't think he's getting anything out of it"... referring to his learning environment at the time. And this person offered an example of the section they had been doing about the weather... that's how they started each day... talking about the temperature, the sky, etc...

But the "educator" seemed solely focused on Hayden not staying seated... & Hayden having been fidgety... & Hayden doing this... & Hayden doing that... but one thing he would not do, was pay attention. That's what this person told us.

Ultimately, however, their "complaining" only offered me clarity. I suddenly understood why Hayden recently began talking about the weather so much at home-- seemingly out of nowhere. Now I knew the source of his new interest. And I'll never forget when I looked at this person & proudly said, "Oh, that's funny-- that explains why Hayden has been bringing up the weather when he looks out the window in the morning! He never used to do that!"

I didn't get a response. But this is how I learned for sure, that Hayden is truly paying attention even when he does not seem to be. 


Well tonight I just witnessed my third go-to story, & I think it tops the first two...

Hayden was playing waiter earlier this evening-- a frequent favorite-- & he was pretending to take my order. (I think he just really wanted a doughnut so I'll admit that asking me if I wanted iced coffee was a clever conversation starter.)

He said, "decaf?" And I said, "yes." And then he said, "spenda"? And I said, "yes, Splenda."

He had a little piece of paper & a pen & he was pretending to scribble a list. And then he said, "How you say your name, Mom?"

And I said, "What?" (He meant spell...)

And he said, "C - r - a ..." & then paused as if waiting for me to finish.

I called out to Dan & told him what just happened. With that, one of us looked at Hayden & asked him how to spell my name (I don't remember who), & again Hayden said, "C - r - a"... possibly even twice...

So then Dan said, "How do you spell my name?"

I wondered if Hayden would repeat the "C - r - a", or, call out any number of random letters.

But that's not what happened.

Instead, Hayden answered, "Dad!"-- as in the name, not the letters.

The truth is I am often spelling my name on the phone. It's the same thing every time... "Cara... with a C... C - a - r - a... Capela... one p and one 1..."

Dan is sometimes misunderstood for "Stan", but he can say "Daniel" & then it's understood that he is saying "Dan". My name, however, is often misunderstood for countless other names... & even when people do get the "Cara" part right, they'll still ask, "K - a - r - a?"

If I think about how many times I have spelled out my name over the course of Hayden's life, when he was within earshot... I can't even begin to estimate a number.

So, yeah... Hayden can count.
He is a visual learner.
He is an incidental learner.
He is always listening.
He is retaining the information he "incidentally" sees or hears...

He is Hayden. And he has fragile X syndrome. And he is a great learner.

July is Fragile X Awareness Month! And all month long, we're gonna
 Let 'Em Know

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