Posts Tagged facilitated communication

Goots Salute

Clay and sitter Marissa, making the rounds

So, here is the dilemma.

Clay’s grandfather, aka Goots, was throwing a party for his 80th birthday. He reserved a room at a nearby restaurant.

On the one hand:

We know from experience that restaurant is a tad crowded and noisy for the little guy. The bathroom, which we would be visiting numerous times is, how shall we say, cramped. Not only does it contain a sink built for Lilliputians, but you will inevitably be smacked in the keister with the door while washing your hands. Try maneuvering two people into that space.

My wife’s whole family would be there, and she and I both wanted a chance to chat and mingle, a difficult task when Mr. Busy Hands is in a crowded restaurant.

Add in the fact that Clay has been in high manic mood for the past week or so – we think it is allergies – and you can see that it was a situation crying out for a sitter.

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Top hat and tails

Off to the prom

Last year, when we took Clay to the prom held by a local autism group things went more smoothly then we ever would have dreamed – especially since he had been up almost the entire night before. This past Friday, he had a full night’s sleep, so we expected more of the same.

The night started, much like last year — getting the little guy dressed in his formal attire. An act that requires a magician’s timing (too soon and he will be completely undressed before we go, too late and we risk a meltdown from rushing), a race car driver’s reflexes (every try tying a tie on someone who is moving?) and the patience of a yogi (’nuff said). We have none of those, but managed nonetheless. Read the rest of this entry »

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Hop, Skip, Jump

Getting in the zone

Before this past Saturday afternoon, we had one experience with Special Olympics.

Clay was in middle school. The teacher told my wife to show up for the opening ceremonies at 9 a.m., not realizing that Clay’s event wouldn’t take place until the afternoon. A hot day at the local high school football stadium. Swarming crowds. A blaring marching band. General chaos. You can do the math.

My wife lasted about an hour (thanks to a nearby John Deere tractor that drew Clay like a magnet) before heading home, where the overwhelmed Olympian fled to the safety of his bed and fell asleep. Three years later the scars are still raw. Read the rest of this entry »

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Saddle sores

Ready and waiting

When we got to the stables for Clay’s regular Saturday morning horseback ride last week, we had no idea if he would get on the horse.

Lately, it has been about a 50/50 shot.

Horseback riding is one of the few activities that Clay seems to truly engage in, something we learned quickly when he climbed on a horse the first time we visited a stable. He connects with horses, pressing his forehead against them, petting them. He is all smiles at the stables. But, starting a few months back, it has been a struggle to get him up in the saddle. Read the rest of this entry »

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Still Here

Last spring, I reported that a family of black vultures had taken up residence in the loft above our garage.

We were initially nervous at the arrival of these Shamu-size predators, fearing in particular for the life of our wee basset hound. No need to worry, Clay said, “ … they are docile.”

As usual, the little fellow turned out to be right, and we coexisted peacefully with the vultures throughout the summer. They even taught us a lesson about not judging a book by its cover (a lesson we learn over and over with Clay). When it appeared they had moved on for the winter, we still found ourselves watching for them on the roof when we came up the driveway or hung out in the backyard.

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Sneak Preview

Later today, Clay is making his third presentation to a class at Arcadia University. He’s practically a grizzled old veteran at this point.

In his first presentation, he talked about what typing has meant to him:

“My life was poor before I was typing. Now I am a free soul,” he told the class.

In his second presentation, he talked about his frustration that he is not typing more at school and about his Mom.

“I type well with my mom,” he typed. “She asks me lots of questions. she loves me very much.”

I won’t be able to make the third presentation, but I have a sneak preview to share since Clay was working on what he wants to say with his typing teacher, Lisa Romaine, on Saturday.

Here is part of what he has written, so far:

“i want to tell them i am very happy they want to see a person talk with a ipad. i hope they see it is me typing not mom. really hard to explain that it is me when mom is holding my arm. want to explain that i am smart but look retarded to most people. this is my biggest problem. i am smarter than i seem. just because i am not like you does not mean i am notworth knowing. think if you could not say what you wanted and only could type it with a person holding your arm. it sucks but is the only way for me.”

On Sunday, my wife asked him about using the word “retarded”.

“You’ve used the word ‘retarded’ twice now. Where did you learn that word?”


from school. some kids say it. they are stupid.”


Do they say it to you?”


no to each other. awesome to talk tomorrow.

Awesome, for sure. Can’t wait to hear how presentation number three comes out.

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Wrestling with the tough questions

When I found out The Philadelphia Inquirer was planning to run an op ed I wrote about Clay’s thoughts on his future, I naturally wondered what the little guy had to say about that.

“awesome to be a star,” he typed on the iPad he uses to communicate. “so cool to be famos.”

The article focuses on questions Clay raised during a session with his typing teacher. Tough questions. The kind of questions the parents of a kid with autism have a hard time facing. Read the rest of this entry »

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A New Buddy?

On the Road to Our Big Adventure

When we pulled into the home of Delaware Valley Golden Retriever Rescue last Saturday, a big question was hanging in the air.

A key factor to consider when adopting a second dog, especially one being rescued from puppy mill purgatory, is how the first dog is going to feel about this intruder. It is a bit like bringing home a new baby, where the older sibling’s reaction can range from a hug to crying to thoughts that are better left unsaid.

The people with this rescue organization know this. So, they insisted that we bring along our basset hound, Miles, when Clay, my wife and I went to meet the dog they had picked out for us. Miles, who was a rescue himself a year ago, likes his spot on the sofa during the day. He likes his position at Clay’s feet during meals. He likes having first dibs on being scratched under the ears. Hard to know how he would react to a canine buddy. Read the rest of this entry »

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House of Wabi-Sabi

I’ve been busy transitioning to a new job, so my wife, Roe DeLuca, has stepped in to write about Clay’s unexpected Christmas gift request. Enjoy.

It was two weeks before Christmas, and we still had no idea what to get Clay.

Clay has rarely been interested in toys and his visual issues prevent him from playing sports. He does enjoy the rhythm and silliness of Dr. Seuss books and will repeatedly watch his two favorite movies (Toy Story and Shrek), but we always feel guilty that we don’t match the bounty received by his older brother.

Now that Clay communicates through a talking keyboard, I decided to ask him if there was anything special he’d like to see under the tree this year. Read the rest of this entry »

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Grinchy Grin

Friday night, we decorated our tree for Christmas and found a place of honor for the Grinch and his dog/reindeer, a gift from a very thoughtful friend last year after we lost ours to Mr. Busy Hands.

The two of them seem quite happy in their new home, nestled between the cowardly lion and a strawberry. Yes, the little guy went to work on the ornaments quickly, as he does every year. A fragile Charlie Brown’s Christmas globe hit the floor just minutes after we plugged in the decorative lights. My fault for putting it out. Fortunately, most of his attention has been on the ceramic Santas, which, as usual, have found themselves relocated to numerous nooks and crannies throughout the house. I found one staring at me from the top of the toilet tank last night. Got me questioning whether I was naughty or nice this year. Read the rest of this entry »

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