Friday, July 10, 2009


Twice in the last 24 hours I've been asked to describe Rojo to people that know of him, but don't know him. I'm a flippin' writer. I'm his own mother, for God's sake, why is this so hard?

On paper Rojo is/has this:

* 13-years-old next week
* Somewhere on the very broad, very vague, very unhelpful in understanding him, Autism Spectrum
* ADHD (Attention Deficit Hyperactivity Disorder, which is so poorly named it's laughable. The boy has an ABUNDANCE of attention, not a deficit - the problem is he pays equal attention to every single thing vying for his attention. The hyperactive part is fitting.
* OCD (Obsessive Compulsive Disorder, although the argument could be made that this is part of the "fun" of being "on the spectrum")
* Auditory Processing Disorder (disconnect between what is heard and what the brain understands)
* Sensory Integration Dysfunction (both tactile defensive and seeking - it's complicated)
* Poor motor planning both gross and fine (rode a bike at 12, handwriting is laborious, forget about ever tying a shoe)
* Unofficially learning disabled (by definition this is a gross discrepancy between intellect and performance - because we have no reliable method to test his intelligence, this will never be proven)

Some of the things he cannot do at this time:

* Fully bathe/shower by himself
* Prepare his own food (even a sandwich, although he does open a mean bag of chips using scissors and several attempts)
* Listen to teacher directions and get to work, he requires an aide to reinforce/repeat what the instructions are, and help him stay on task, as well as help to modify as needed
* Tie, button, snap or buckle, which means on school days he needs help dressing - summertime T-shirts and basketball shorts he's got covered

What the tests/diagnoses/report cards don't say:

* He's fully enlightened. He has no ego. None. He loves everyone, has no judgment, only compassion, and is incapable of having an unkind thought or speaking an unkind word.
* He is always in the now, with no regrets and no looking back. He has positive expectancy for the future and looks forward to the simplest of pleasures/activities, and none are beyond the next 24-hours or so.
* He never complains. Never.
* His sense of humor is highly developed and his comedic timing is dead on.
* He's incredibly empathetic, he sees/senses when others are upset and "holds space" with them so beautifully, I wish he could teach classes on how to do this. He just knows intrinsically how to be with another's pain, not fix it, not make it go away, just be with it.
* He is well loved by all: teachers, classmates, kids in other grades both older and younger, and of course, his family.
* When he smiles his dimples dig in, his eyes twinkle, and his pure, unadulterated joy washes over everyone in the room.

And that's just for starters...

(Photo of him playing the "Yelling Game," I think in this one he "is" TD Jakes.)


Anonymous said...

it may have been hard, but you did it perfectly. i want to be rojo when i grow up. he is light years ahead of nearly all of us, isn't he?

Kelly said...

For 5 years, I worked for a non- profit that provides services to adults with developmental disablilities. I loved that job.. the people I worked with taught me so much about myself, life and what I wanted out of it, but I was never able to put it into words when friends and family looked at me with pity and disbelief asking me how work was going. After reading this post of yours, especially the last paragraph, my heart just swelled. You put the words right into my mouth.

I really love your blog, reading about your family and your observataions. I read many blogs daily, but yours is one of the first ones I look at.

Drama Mama said...

He sounds perfect.

Angie Ledbetter said...

Go get me a spoon!

I wanna be like Rojo when I grow up.

Your angel could be the twin of one of my favorite students ever. My daughter is his PCA now.

Wanda said...

Beautifully done. And all they have to do is read your posts about him to get him. be incapable of speaking an unkind word! He is my hero.

Anonymous said...

This made me cry.

Anonymous said...

This post makes me think maybe I am the one that is "disabled"....

Go Mama said...

Love that boy!

...his pure, unadulterated joy washes over everyone in the room.

Happy Early Birthday Buddy!
13 is a magical number.

Crazed Mom said...

Sounds like an awesome kid! I think you did a good job describing him. I love kids who do not judge. He sounds to a joy with several challenges...well worth all the effort. :)

Nancy said...

Just think of a world with more Rojo in it! Beautiful Carrie!

Deb Shucka said...

He is truly a gift, and one you know perfectly. We're so lucky that you share him with us. Love to you both.

Teri said...

Sounds perfect to me!

Anonymous said...

I can't wait to meet him

kario said...

My favorite way to learn about him is by listening to stories of him.

He's perfect just the way he is.