Song of the Open Road (Part 1)

Special treat today. A blog entry from Clay’s Mom – and Number One Fan – who never wavers from the journey to help Clay communicate.


Allons! the road is before us!
It is safe—I have tried it—my own feet have tried it well.
– Walt Whitman, “Song of the Open Road”

“help me on the more difficult manner of typing please.”

This is how Clay greeted Marjorie Cases, a powerhouse of an occupational therapist we met with a few weeks back.

For us, it seemed that all roads lead to Havertown, Pa., where Marjorie has a therapy center. I had recently reconnected with her as a result of Larry’s article in the Philadelphia Inquirer. Before that, my friend Juliette had called to tell me about the successful sensory integration and vision therapy work Marjorie was doing with her son Colin.

We knew Clay needed help in those areas as well if he’s to improve his typing skills and move towards independent typing.  A few emails and one phone call later, Clay and I were on our way to an optimistically planned three-hour consult. Read the rest of this entry »

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Three Lessons Learned


Clay turned 18 this summer, a pretty big milestone for any kid – and any parent. This one got me thinking about life with Clay over those years – the gradual road to a diagnosis, an emergency trip to Children’s Hospital in the middle of the night for a scary infection, surgery for swollen adenoids, the continuing search for therapists, the search for the right school situation, his connection with horses and other animals, the discovery of his inner world through typing. It has been quite a journey.

To celebrate the little guy’s birthday, I collected three lessons he has taught me in an article for the Philadelphia Inquirer, which appears this weekend. Click here to see it along with a couple of pictures of the wise one around town. Read the rest of this entry »

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Monday Bloody Monday


I want to tell you about coming downstairs one morning last week to find Clay covered in blood, but first I have to explain about my father-in-law.

My father-in-law, a man with a heart as big as a motorhome, has reached that stage in life where he gives things away. It doesn’t really matter what it is. A half eaten box of cornflakes, a set of socket wrenches, some bent wire hangers, cash. For awhile there you couldn’t leave his house without being offered something.

“Take it. I don’t need it.” Read the rest of this entry »

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Like Pulling Teeth


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 »

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Blog Interrupted


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 »

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Don’t Fence Me In


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.)

Read the rest of this entry »


Ruby Slippers

Redshoes - oldshoes250cropped

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 »

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