Tuesday, July 14, 2009

Use Your Words

Ever since Sean was a toddler he struggled with language. I constantly reminded him to "use your words." He'd point, stomp his feet, grow restless or simply cry. How disappointing it was that I wasn't a mind reader. At that time, I convinced myself into believing that he was going to be a late talker. He was 2 1/2 years old and had some words -- Mom, Dad, Papa, dog, cat, yellow, bus and hot. And a few others words that were tough to decipher but were still words. But for the most part, he was without spoken language. My other son had talked late so I assured myself that this, too, would be the case with Sean. Besides, he had babbled like a fountain as a baby, and although his eye contact became sluggish, he still had meaningful expression and could meet our eyes. At some point, on his own terms, he would speak and life would move forward accordingly.

Looking back I realize that sometimes we shield ourselves from the information that is plainly there. I'm not sure if this comes from fear or just a mechanism of survival. By the time Sean was three he had been evaluated by an Audiologist, Speech Therapist and an Occupational Therapist. The audiologist ruled out a hearing loss. The two therapists both concluded that Sean was developmentally delayed and had Sensory Integration Dysfunction. Not too long after, it was confirmed that Sean had autism.

Sometimes life takes us on a journey that we weren't expecting. We've packed for the sunshine and the beach and when we arrive it's snow and mountains. Either way, we make adjustments. Looks like no margarita, beach chair and a swim but rather a hot toddy, a pair of skis and fresh powder. What choice do we have but to make the best of it?

Today Sean had his second day of camp. It's a program for disabled children that uses art and music therapy. The people that run this camp ought to be canonized. Saints, really, who have decided what they truly want to do in life is to work with disabled children. We line up to sign in and drop our kids off on a carpet square. Sean is jumping and saying hi to the teachers.

One teacher smiles at me and says, "Boy he sure does have a lot of energy!"

I put his bag into his cubby hole, "I know," I say, "and I swear he's not chugging Red Bulls for breakfast."

We laugh. It is true. Sean is constantly moving -- a blur sometimes. Hopping, running, laughing, climbing and yes, crying. He feels things so much more than me. When he is happy I need a crowbar to pry him off the ceiling. When he is angry I'm ready to assume the tornado position in the hallway. There is not a lot of middle ground -- mostly enormous highs and bottomless lows.

Some of the other children spin and hop, while others sit alone, pulling on a loose thread in the rug or lining up blocks. Others talk while a few have little or no words. Some are more impacted than others. Most of the children are on the Autism Spectrum. There is a child with Downs and a couple other who have chromosomal abnormalities. I am part of this community. As is Sean. I am so happy that Sean is able to carve out a little space in this giant world to laugh and play and be with other children like him. And yet I am sad to think that the rest of the world may not be prepared for my son or my son won't be ready to be part of the bigger world.

As I leave he smiles and waves his hands, his little fingers marked with paint and marker from yesterday. I wave back, "Bye, little man. Be good." He is my little man -- squirming on a carpet square his eyes steeped in mischief. "Be good. And safe."

So today I am using my words -- following the advice that I gave my child so many times. If I don't use my words than I am nothing, but if I do, I am everything. My words are the tiniest bubbles, making their way through the cold waters and popping in sunshine. If I can't find the words than I can't find myself in all of this. I need to use my words.


Kevin M. Folta said...

Gosh Katie, that's really sweet. I'm glad you are doing this. I think of you, Bob and the boys all the time.

It makes my blog entry of "30 Years After Disco Demolition and It Still Sucks" seem rather trite.

Please post some recent pictures of of Sean (and Charlie too) if you can. Take care,


Jeff said...

Hi Kate,

Well done :-)

I look forward to keeping up with you and the family through your blog!

Say hi to the boys

love ya kid

Jeff p

jsanta said...

Sweet Kate,
I am reading this in alone in my office instead of working on the schematic for our final day of camp. The tears just will not stop. You are such a gifted writer, wonderful mother and treasured friend. The Thursday of camp I always speak to the campers what the real blessing I have received from this activity, as I was writing to you I looked up and saw the other two comments from Kev and Jeff.. there's a beautiful symmetry to this. I love you all and am thinking of you today. Keep writing Kate, it makes the distance bearable for me... I hold you close. Love, jude
PS.. Jeff, I have dibs on this material.

bbstr1223 said...

Aunt Katie I really think You r better than most of the writers i've read about. I might use this site for my current events in social studies. KEEP WRITING I WANNA KNOW WHAT HAPPENS NEXT