Posts Tagged facilitated communication
It was 7:30 in the morning.
I’d been up all night with my wife in the delivery room trying to help her push out a baby that clearly had no intention of leaving the womb. She was heading into an emergency Cesarean because the baby’s heart rate was dropping, and I was still sitting in the delivery room – feeling scared and alone.
A nurse stuck her head in to say someone was asking for me at the door to the hospital’s maternity area. Read the rest of this entry »
I stashed the 50 pound bags of organic topsoil in the side of the garage that Clay doesn’t typically visit. His swing is on the right side. I put the bags on the left and closed the door. It was a rainy Sunday morning. I wanted to keep them dry—and away from Mr. Busy Fingers—until I was ready to dump them in our vegetable garden.
Every couple of years we decide to plant a garden in our backyard, and this is one of those years. The thought of fresh tomatoes and peppers blocks out the memories of past painful experiences. Like the vision of holding a newborn in their arms helps women forget the pain of childbirth long enough for them to face it all over again. We are not as ambitious as we used to be—no more overripe corn, mammoth watermelons, pea-size strawberries, grape vines enveloped in a cloud of yellow jackets. We keep it simple. Tomatoes. Peppers. Maybe some herbs. With experience comes wisdom. Or exhaustion. Sometimes both. Read the rest of this entry »
A few Fridays back Mother Nature gifted us with a half foot of snow and an instant three-day weekend. This meant Clay had no chance to stretch his legs outside, so I was happy we had an occupational therapy appointment scheduled in the afternoon with Marjorie Cases.
Marjorie and her staff allowed us into the therapy room early to use the swing, which has a calming effect on Clay. When Marjorie came in, he was ready at the gate for his hour-long session. Read the rest of this entry »
It was the second day this week we wound up snowbound, so Clay shot toward the door Tuesday afternoon when I asked if he wanted to take a walk.
For me, it was a survival tactic. Boredom leads to compulsive behaviors. We already had barred entry to the upstairs bathroom and moved every paperback in the house out of reach. Preventive measures.
For the little guy, walking is what he was born to do. He puts endless miles on his shoes every day. But trudging through the snow has its challenges. The great walker doesn’t like things on or near his head (hence the monthly haircut wars), so a hat to keep his ears warm is out of the question. He’s not a big fan of gloves, either. Boots he’ll tolerate. He’s used to wearing them for horseback riding. Read the rest of this entry »
Here’s the second part of an entry from Clay’s Mom – a look at the little guy’s new circle of friends.
It’s the night before Election Day, and I’m reminding Clay that he’ll be off from school the next day. I ask him what he wants to do, and he raises his hand to type on his iPad with no hesitation.
“can my friend michael come over? please call his mother”
I am gobsmacked at first.
Then, tears fill my eyes.
Clay has never asked to have anyone over to the house before.
And I, knowing that to meet Clay’s needs often requires taking the road less traveled by in our community, dry those tears by doing a happy dance. Read the rest of this entry »
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 »
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 »
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 »
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 »
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 »