For the past 10 days or so we have been playing a game called, “Guess what it is that is bothering Clay.” It is quite a stressful game. A little bit like Clue, except there is no Colonel Mustard and the stakes are real. I suppose it is not really a game at all – for Clay or us. Especially for Clay. But I find that it helps to look at it as a mystery to be solved rather than a glimpse into Dante’s 10th level of Hell – the one his publisher asked him to leave out to protect the squeamish.
Now, you can play along at home. Read the rest of this entry »
My apologies. I won’t be able to write a blog update this week because we are breaking in a new type of dishwashing soap.
I’m sure you understand.
New bottles of dishwashing soap – with their intriguing shapes, alluring colors, inherent squeezability – draw Clay’s attention. We try hard to stick with the same brand to avoid these issues -we really do. But sometimes circumstances dictate a change. We are in the midst of such a change, and it is all consuming.
There is no point in hiding the new bottle. We could put it inside a paper bag, inside of a box, inside of a safe, inside of a darkened corner of the locked basement. Clay will know it is there. He will find it. My worries about his eyesight (How do you give a nonverbal kid who can’t sit still an eye test?) are generally alleviated when something new enters the house. We could place a magnet the size of an ant’s kneecap on the back of the refrigerator. Old eagle eye will spot it, as he shoots through the kitchen at nearly 100 miles per hour, and carry it off to some far distant corner of the house. Where one of the dogs will sniff it out and chew it up. Read the rest of this entry »
I don’t know if this is unusual or not, but I can pinpoint the exact lowest point in all of the ups and downs Clay, his brother, my wife and I have faced together.
No, it wasn’t the News Year’s Eve when a doctor decided a new drug treatment was just the thing for Clay, and he wound up literally hanging from the ceiling – ripping a ceiling fan out by the roots.
No, it wasn’t when Clay’s psychiatrist had to meet with us in the office parking lot because we couldn’t get the little guy into a confined area. (Looking at our haggard faces under the street lights, the doctor actually waived his fee so that we could spend the money on a sitter and take a night off – but that is a story for another time.)
Getting a new pair of shoes was a butterflies-in-the-stomach experience for me as a kid. Nearly in the same category as a visit to the dentist.
Once a year my mother would take my brother and I to a corner store in a decaying neighborhood near where she grew up. Inside, an old man, stooped with age, arthritic fingers smelling of foot sweat, breath reeking of feta cheese and death, carefully measured our feet – poking and prodding – while we sat in tiny chairs. Next, he would retreat to the back room, which I imagined contained all sorts of horrors – a wreath made of pinky toes, jars of pickled children’s feet, the mummified carcass of Dr. Scholl. Read the rest of this entry »
I was coming down the steps into our living room Sunday night, when I looked up to see Clay up to his elbow in a good scratch. Without going into great detail, let’s just say that the warm weather brings with it increased irritation in certain regions of the body that don’t get as much air as other parts.
While gazing at this vision, I neglected to put my foot on the last step and wound up face down on the wood floor with a crash so loud our neighbor Frank probably heard it. The book I was carrying landed across the room. Read the rest of this entry »
Last Friday night, for the third year in a row, we took Clay to the high school prom put on by the Autism Cares Foundation, an amazing local group. The last two years went relatively smoothly, so we didn’t expect any surprises this time. Clay, of course, had other plans.
While I headed out after dinner to visit my Mom on Mother’s Day, my wife sat down with Clay in front of his iPad to see if he had anything he wanted to say.
Turns out he did:
“we so want to tell you happy mother’s day. we love you so much.”
A great start, but there was more: Read the rest of this entry »
After working through most of last weekend, I decided to reward myself with a few hours off on Wednesday morning. Spring is in bloom at last in our neck of the woods. A walk at a nearby state park seemed like the way to go. Read the rest of this entry »
Clay’s Mom and number one fan, Roe DeLuca, provides an update today about how the little fellow weathered the recent hurricane. Thanks, everyone, for your patience. We hope to start blogging more frequently again in the near future.
We should have known as we made the biweekly Saturday trip to see Clay’s typing teacher that we were experiencing the calm before the Hurricane Sandy storm.
It seemed as if everyone along our route to North Jersey was out driving—and all of them were in line getting gas for their cars and filling tank after tank to fuel their generator.
Once there, Clay quickly got to work and had a lot to say:
my typing is good today because my brain is very calm and my badly coordinated body moves better when my thinking is calm.
It was clear the hurricane was on his mind:
getting ready for disasters is stressful work but being home with your family is more important than wasting time at gas stations. this will be a interesting event that might be a historical event or a big dissappointment. i think a historical event.
That was Saturday, and with the storm scheduled to hit our area Monday night into Tuesday, it gave us some time to prepare. Read the rest of this entry »
“We are the perfect example of intelligence working itself out in a different way.”
– Tracy Thresher –
The night before we took Clay to see a presentation by Tracy Thresher, we asked if he wanted to prepare some questions or thoughts to share.
Tracy, one of the stars of the movie Wretches & Jabberers, learned later in life to communicate through typing and has been spreading the word ever since not to judge people with autism by what you see. (Wretches and Jabberers follows Tracy and his friend Larry Bissonnette as they travel to Sri Lanka, Japan and Finland to type with others who have broken out of the silent world of autism.)
We figured he offered a rare role model for Clay. Clay’s typing teacher invited us to attend the presentation, which took place at a school run by Celebrate the Children.
Clay made it clear he didn’t want to prepare anything, but we hoped once we got there he might have some thoughts.