Pas de visite!

Passover Miracle

Pesach began on the first of April in 1999. Siobhan was going to Eretz Florida for Passover. When you consider the enormity of the responsibility of caring for her around the clock this was a very big deal. True respite really seems like a miracle. Siobhan was traveling with a family that has been a part of her life since preschool. They have been wonderful to Siobhan, even including her in a few of their family trips like the time in 2001 they went to New York and they saw The Producers with Matthew Broderick and Nathan Lane. To this day Siobhan has The Producers soundtrack at the top of her playlist. Who knew it would turn out to be true. But in 1999 they were going to Florida to join in celebrating Passover with other family members. That gave Linda and I  a few days to do something. Our Passover miracle was a three and a half day stay in Paris, France.

Churches and Museums

I studied French for many years. Linda never ceases to remind me of this because I have a marked inability to speak French. I can read fairly well, and with some looking up I can write, but when it comes to having a conversation in French I’m at a loss. Come to think of it, this is also evident in English. My vision of France, imparted to me by a few very good French teachers, was heavily informed by movies and restaurants. At that point in 1999 I have seen the good French movies (the ones without Gerard Depardieu) and I believe that the French, well, they see things marvelously differently so I was looking forward to experiencing the marvelous cultural differences. And from the French restaurants we visited in Manhattan I had a distinct impression that fine dining is a French national glory not to be missed, and I was looking forward to the glorious food. Linda was thinking churches and museums. And that is what we saw, churches and museums.
portrait of jesus looking up towards crown of thorns on head

The Relics

Since we were on the mostly church tour, and since I knew the story of The Relics, and because legend has it that the crucifixion of Jesus started at nine o’clock and that he died at two I made sure that we visited Notre-Dame Cathedral the afternoon of Good Friday for maximum effect. The Relics are only out of the crypt each Friday of Lent and for three days at Easter. But wait, what are The Relics, and what do they have to do with Notre-Dame? The Relics of the Passion at Notre-Dame de Paris are a piece of the one true cross, a nail of the passion, and (timpani booming) the crown of thorns. If you have questions at this point about the provenance of these objects I refer you to Helen, mother of Emperor Constantine; Baldwin the II, the Latin Emperor of the East; and the holy King of France, St. Louis. That is the chain of evidence. Look, either you believe in this or you don’t. I don’t, and that figures in our story.

Two Knights

Ah, but there is one more link in the chain. After the little matter of the Revolution in France the churches were hey presto no longer owned by religious orders, they became the property of the people. The Relics of the Passion were handed over to the Dean and Chapter of Notre-Dame Cathedral and given to the statutory care of the Knights of the Holy Sepulcher of Jerusalem. The Jerusalem part has me shaking my head but this is why two Knights are always in attendance when the Relics are presented to the faithful, and in the faithful part lies the rub.

Pas de Visite!

So the scene now set we join the queue in Notre-Dame Cathedral on Good Friday, the second of April 1999, at approximately the hour of the death of Jesus. Way up at the head of the queue is a man in the uniform of a Knight wearing rather incongruously thick white gloves. He has a pole in one hand, and at the top of the pole is a signboard. From time to time he thumps the sign board and calls out loudly pas de visite! pas de visite! and each time he performs this ritual some people peel off from the line and walk away. I am curious, but perhaps this is the marvelous French culture that I want to see in action, so I continue looking around and talking with Linda. Again the Knight thumps the sign board and calls out loudly pas de visite! pas de visite! and several people peel off the line never to be seen again.

Relics Revealed

It is not until we get up rather close that I read the sign. It is an admonishment! I had heard about the bristly nature of the French when you cross their cultural lines, such as ordering the cheese plate up front, horrors! The admonishment is very clear. As I’m reading it the Knight thumps the sign board and calls out loudly pas de visite! pas de visite! and several people peel off the line ahead of us and we only have about eight feet to go. The sign says that the Relics are not for visiting. No. The Relics are for veneration! And then we are even with the Knight and he is extending to me some sort of holy card for which he clearly expects an emolument. Not expecting this I fumble in my pockets for money. I come up with something that from his look is not enough and we break free into the main altar area of Notre-Dame, joining the line of venerators. And there they are, the Relics, ensconced in gold and crystal reliquaries laid out on velvet cushions with the Knights in attendance to make sure that you exhibit veneration and not visitation. There is a clear sign of your compliance. You are expected to bow and kiss the relics.
crown of thorns in ornate gold and crystal reliquary on velvet cushion in front of portrait of jesus wearing crown

Holy Moly

Remember I mentioned that either you believe in this or you don’t and I don’t? Proving that there are indeed atheists in foxholes, I was, how you say, conflicted but not by disbelief. I was immediately overtaken by the image of all those who had come before me and who had slobbered their lips all over the Relics. No time to think at that point. I just pressed my lips as shut as I could and barely grazed the Relics and joined the exit queue. Next time, I vowed, we would go to an atheist country. It took us a while, but after that we all went to Ireland so that idea was right out!

Three Days

You might also remember that up front I said that Siobhan was going to Eretz Florida for Passover. Excluding travel we had about three and a half days on the ground in Paris. When you really think about this it boggles the mind. We did make it back to Los Angeles just in time to get our car and hightail it back to the airport to pick them up. Such is the life of a parent, especially a parent of a child who needs round the clock care. Any period of respite is usually very brief, and during that time there are taxes to do, or the wash, or writing a scholarly paper or even this story or any number of things that are next to impossible to do when Siobhan is here. We were very grateful to have three and a half days to experience Paris and visit churches and venerate the Relics. I will never be the better of it.

I Want Santa Claus

Giant Twinkie

When Siobhan was very young and was finally able to sit up by herself I had a habit of putting her in the supermarket cart seat with the cart reversed. Pushing with the cart reversed meant that Siobhan rode up front with an unobstructed view of things. She loved it, and would clap her hands in approval.

We were nearly at the end of a supermarket aisle when it happened. A seven foot Twinkie came around the corner face-to-face with Siobhan and it said something I couldn’t hear. She flipped out. The Twinkie then made things far worse. There was a grill on the Twinkie body so the wearer could see and breathe but the grill was way lower than the costume’s printed face. Shifting in the costume to make his face visible through the grill the guy in the Twinkie started repeating “It’s OK!” right in her face. By this time she was wailing. This all took a few seconds but by the time I was able to say “Stop!” and reverse the cart the damage was complete. After the Twinkie there was no consoling her.

To this day she gives a wide berth to costume characters in enclosed suits such as may be found at Disneyland. Princesses are somewhat OK since their faces are showing and she loved the Little Mermaid for a while, even standing next to her to pose for a picture.

Public Service Announcement

Just a public service announcement to people in general about the actions not to take when you upset someone, as the Twinkie did to Siobhan. Getting in your victim’s face and repeating “It’s OK!” is not a good idea. Thank you.

Mall Santa

Siobhan went to get her picture taken with the mall Santa a few times, all unmitigated disasters, and we decided Santa just wasn’t for her. Two years ago when Siobhan was twenty years old we were out walking on the Third Street Promenade here in Santa Monica. I happened to mention that Santa was at the mall a few blocks away and we should go visit him and walked with her in that direction. A block away from the Santa entrance she made a sharp right and walked all the way around the mall to the entrance where Santa was not. A trip to a mall Santa this year confirms her undying revulsion. She’s right, you know. The Krampus agrees.

Seasonal Expectations

Left to my own devices I wouldn’t do anything to mark the Winter Solstice, but Siobhan has high seasonal expectations. Many years ago I put up old fashioned holiday lights on our front porch and took them down in January. She insisted that they be put up again, and so we have red, green, blue, and white holiday lights on our porch year-round. At least it makes it easy to give directions to sighted visitors. Mind you, Siobhan does not read or write or speak vocally, but she knows when it is time to start watching “It’s the Great Pumpkin, Charlie Brown” in advance of Halloween. She also knows that around Thanksgiving is when you start watching (the original, black and white, please) “Miracle On 34th Street.” She has a finely tuned sense of the time of year and the passing of seasons. She is elemental. She is smart.

Santa Letter

In 2013, out shopping on December 24th, Siobhan stopped in front of a train set. Trains are a passion for her. She looked long and hard at a train set, and returned to it again after moving away. After she came home I raced to the store and picked it up. That night I helped Siobhan make a picture letter. At the top was a picture of Santa, followed by a picture of the train set. I told her that this was a letter to Santa from Siobhan and her eyes got wide. Then I asked her if that was the train she wanted. Yes, she signed, very emphatically with a very visible up and down motion of her arm and flick of her wrist. I had her write her signature on the letter, and I told her that we had to wait for Santa to come that night. The next morning the train was under the tree. Did she believe in Santa, or not? She didn’t like the mall Santa, but that might be attributed to the Twinkie effect. How could we tell? Why is this significant to me? I’d just as soon go to Disneyland on December 25. As a matter of fact, that’s where we were this year, eating at the Blue Bayou inside the Pirates ride. Well, it turns out that I’d like Siobhan to believe in Santa as a matter of her personal growth, yet she had never asked for Santa on her own. What was up with that?

Pure In Heart

What’s the one thing that was missing in this equation? She doesn’t like the mall Santa but she clearly has a very good idea of exactly who Santa is. How is it that Siobhan knows in her heart and mind that Santa can bring her a train? Maybe she doesn’t. We never engaged in “what do you want for Christmas?” with her, she’s never watched commercial TV, doesn’t know from toys or gadgets. For that matter, she’s always been totally indifferent about birthday presents and presents in general. Sure, she loves tearing off wrapping paper, and she’ll gladly unwrap all the presents, even those not meant for her, but this is nothing other than a fun process to her. At her birthday each year we have about forty people over and we tell them in advance, “Siobhan doesn’t want presents, she just wants the experience of your company.” And it’s true. So if Siobhan doesn’t want presents, and she can’t stand Santa “in person” then what is the essence of her Santa experience? It turns out that Siobhan is pure in heart in that she loves Santa for what he does and represents, not for what he can bring her, and she learned this from the large number of DVDs she has that include Santa like “The Rise of the Guardians” and “Rudolph The Red-Nosed Reindeer” and “Frosty The Snowman” and many others.


So what was missing from this picture? What would let us know that Siobhan wants to talk about Santa at Solstice time? Well, perhaps having a word in her Augmentative and Alternative Communication (AAC) system would help. Dopey Daddy! Just before the Solstice, as soon as I made this brilliant long overdue connection, I put a Santa Claus icon in her Speech Generating Devices (SGDs). With all the thousands of words available to her, Santa was missing from her SGDs. Turns out Siobhan hit that button 112 times since then. Now at Solstice time Siobhan will be able to join in all the reindeer games, talking about Santa, and lights, and things that make the season merry.

Icon: Santa Claus

Magic Moment at HeartHill Farm

I’ve been trying to find time to write this post since we were at HeartHill Farm last evening, but we’re on vacation in Ireland and in this family, vacationing is an entirely too energetic process. Needless to say that now it’s late at night and I don’t know if I can do the subject true justice but I’ll do my best.

Three days ago I got a Tweet from @galinwellies:

Hi Joseph, I’m a farmer’s wife in Ballyduff, over the road. I blog at, it might be of interest…

I suppose I should tell you that I’m in Ballyheigue, County Kerry, Ireland and I’ve been Tweeting on my @AccessibleJoe account with the hashtag #Ballyheigue and my daughter Siobhan loves cows, so. In this part of the world the word “so” is used as punctuation. “We’ll be over at half three then, so.” It’s not “so then” and it’s not anything but the end of a communicative effort, so.

It turns out that Anne Bennett Brosnan, known in Ballyduff as “the woman from Cork” has married into a dairy farm, HeartHill Farm. In Ireland some say this makes her a farmerette. Indeed, there’s a woman who Tweets as @IrishFarmerette. Anne and I traded some Tweets and I invited us over so Siobhan could experience the milking. Anne and her husband Dan Brosnan were extremely gracious and their young boys, Daniel, Phillip, and Anthony, were full of laughter and spit up. If you consider that Anthony was only born in May you’ll understand about the spit up part, so. After tea (nothing in Ireland is done without tea on both ends of it) we headed out to drive the cows to the milking parlor. It’s called a milking parlor in a great many parts of the world but while it does have everything to do with milking it has less to do with a living room and more to do with a massage parlor.

Dogs nip at cows heels and people walk at rear to help the cows move from field to milking parlor.
Anne with baby Anthony, Siobhan, Linda, Dan and the dogs, drive the cows.

Siobhan is a natural cow herder. I’m sure if Siobhan could do it, she’d choose to wear one of those “I’d marry a farmer” stickers. Lorna Sixsmith, the aforementioned @IrishFarmerette, has a book called “Would You Marry a Farmer?” It seems that she was at the ploughing a few weeks back handing out those stickers. The ploughing? I’d marry a farmer stickers? Read more about it on her blog.

In left corner of the frame is Siobhan looking at the cow behind a set of bars is looking back at her from the right side of the frame.
Siobhan venerating the cows at milking.

Siobhan was entranced! She has used her speech generating device to say “cows” 4,249 times since we got here less than two weeks ago. She’s mad about cows. We got her some cow plates, and a cow cup, and her cousin, Mary Ellen O’Connor got her a cow painting printed on cloth for her room. Smitten is not a strong enough word. I can tell you that for Siobhan, a visit to a working dairy farm, driving the cows in, experiencing the milking parlor, was a peak experience. I got it on video, 41 minutes of it, and it’s already on her iPad for her to see over and over again. The photos in this post are stills from the video.

Siobhan holds speech generating device at chest level, pushing icons, cow visisble, baby in sling on mom.
Siobhan comments “Look!” while baby Anthony looks on.

So here’s to the farmers of the world, some of whom are very generous in sharing their craft with others and with Siobhan in particular. Much thanks to Anne Bennet Brosnan and her husband Dan Brosnan and their young boys, Daniel, Phillip, and Anthony for proving once again to me that Twitter can sometimes provide a means of meeting people that goes beyond the mere ordinary. Phillip gave Siobhan a cow figurine that she won’t put down. I’ve never seen anything like her attachment to it. Thanks Phillip! Anne and Dan are remarkable people doing a great service to us all, and doing it year round, seven days a week, twice a day for much of the year. Thanks very much to you all for making a magical moment happen for Siobhan, a moment she’ll remember all her life.

Join the conversation on Twitter at @blacktelephone (and @AccessibleJoe).

Cow Seeing

I Want To See Cows

Siobhan in rain at side of road looking at cows grazing and waiting to be let in to milking parlor.
Siobhan up close and personal with beloved cows.

Sight seeing is not for Siobhan, at least in Ireland. Cow seeing is her desire. We make up a calendar for the kitchen with photos for each month. In light of our trip, for the month of October I used a cow picture I took from our last stay here. Siobhan refers to the calendar frequently and as the trip approached she began to say “I want to see cows” with her speech generating device (SGD). She said it more as each day went by until we got here. Now she is saying it all day long. We’re staying between two dairy farms overlooking Ballyheigue Bay, County Kerry, in the southwest of Ireland, on the Atlantic Ocean. Referring to the bay, a tourist asked my cousin how long the “lake” is and my cousin said “it goes all the way to New York!” As the saying goes: the next parish is New York!

Cows grazing in a cliffside field overlooking the bay with mountains in the background
Happiest cows on earth overlooking Ballyheigue Bay and the Dingle Peninsula.


Siobhan’s enthusiasm about the cows has resulted in some complex behaviors we need to reshape. An old behavior from when she was very young is taking an adult’s hand and dragging them to the object of her desire. It wasn’t that we haven’t noticed this, but so many people say “Oh, that’s OK” and let her drag them around. She’s 22 now and stronger. Her obsession with the cows gives her urgency and we’re afraid that she will take the hand of a stranger and overbalance them. This is a communication problem so Linda came up with a communication solution. We added a new icon on the front screen of her SGD and Siobhan is saying “look!” all the time now to get us to look at what she’s looking at. We’re generalizing from the start and if there are no cows we say loudly and with joyful voices “look at the beautiful mountains” or “look at the wonderful ocean.” This is very satisfying to Siobhan and has cut down on the grabbing and dragging.

First screen of speech generating device with ten active icons one of that immediately says look! when pressed
The Look! icon immediately speaks when pressed


By the way, in the DynaVox Xpress SGD, the Susan voice by Loquendo does a really great “look!” in a higher pitch and with just the right enthusiasm. That voice is not available in the DynaVox Compass app for iPad where the best voice available is very flat and cheerless. Note to DynaVox: possible in-app purchase?


Siobhan has been allowed to occasionally pound the rear window on one of our cars. We’ve not done enough to stop this, chalking it up to enthusiasm. Now she’s pounding the windows and sliding glass doors to get us to open them. All behaviors come home to roost. We must avoid running over to stop the pounding which appears to be reinforcing it. To attenuate the pounding we are working on getting her to say “I want help open door” and close door and open and close window. Siobhan learned how to open the window by herself, she just can’t close it. This is working somewhat. We are focused on her future as well as the present. Have to remember not to reinforce behavior that may eventually steer her to a more restrictive placement.

Head’s Up!

Siobhan has moderate inward curving of the spine which we hope to prevent from worsening. Her head tends to droop when in her routine environment. On this trip her head is up because she’s enthusiastic about life. She got a free scone for each of us by saying “I want chocolate chip cookie” at the Ballyheigue Community Center where they were very nice to her. She was very happy to get positive attention and also to eat her scone! Functional communication at its finest!

Functional Communication

The key to Siobhan’s behavior is functional communication. Without it we don’t know what we’d do and are indebted to Donna Banzhof of Pyramid Educational Consultants for her expert help over many years. With all this vocabulary development the dragging around has nearly ceased. We’ve gotten nary a push nor a pinch since we left. There is the pounding to contend with, but we have a strategy that’s working. So as usual we’re bumbling along, capitalizing on opportunities and shaping behavior into functional communication as best we can. Besides, Siobhan is getting some exercise! She must be walking about a mile a day just in the house going between four windows and sliding glass doors to see her beloved cows.


Team Training February 2002

Closeup of Gaynor's face, wet after a bath, with big brown intelligent eyes and shining black fur, looking noble.
Gaynor came into our lives during the second week of February 2002 and died this past Sunday, May 18, 2014. She was fourteen years old. Gaynor met us during a Canine Companions for Independence (CCI) team training in Oceanside, California. Team training is where they match up dogs with recipients and train the humans about doggie ways. The teams stay in the dorms at the CCI facilities for two weeks and have classes all day and written tests at night. The trainers size up the recipients and match them to the right dog. At first Siobhan was matched to the wrong dog. It was when he growled aggressively in front of a trainer, Allison, that he washed out of the program. Gaynor had been selected as one of the possible dogs but her principle trainer, Todd, thought she might wash out because she couldn’t stand up to the early part of team training where teams were rotating through dogs and many beginner handlers were working the dogs. This made Gaynor nervous. If you’re reading this Todd, we will never forget the gift you gave of your time training Gaynor. Thank you CCI, an amazing organization, and thank you Todd, a great trainer.

Puppy Raisers

Gaynor was nervous, but Siobhan needed a dog, so Gaynor was pressed into service. By this time we were more certain in our commands, and Gaynor responded well to working with one team. When we were matched with Gaynor we learned about her puppy raisers. Puppy raisers play a big part in the CCI service community taking in puppies and raising them until they are ready for training. Gaynor’s puppy raisers came to the CCI graduation ceremony. We’ve visited them a few times with Gaynor in Flagstaff, Arizona, and owe them a big debt of gratitude. Here’s to all the puppy raisers everywhere, you are amazing! If you are reading this Cecile, Claire, Brett, and Dave, we thank you from the bottom of our hearts for the gift of your time and love in raising Gaynor.

Love Heels

Gaynor looking calm lying on bed next to Siobhan who is smiling broadly and clapping her hands.
The first night Gaynor stayed in a kennel in our room we made some time for Gaynor and Siobhan on the bed together. Siobhan laughed and clapped her hands and had a great time. Gaynor proved to be a rock of calm good sense. I often noted over the years that Gaynor was not a real dog, she was actually more like Nana, a dog employed as a nanny by the Darling family in Peter Pan. Gaynor bonded well with Siobhan and they went everywhere together. Siobhan and Gaynor were featured in a book, “Love Heels: Tales from Canine Companions for Independence” by Dean Koontz. We have given away a good number of copies as gifts. It’s amazing to read the stories of people who are helped by working dogs.

Canine Companions for Independence

Gaynor was a skilled companion dog. CCI also trains service dogs, facility dogs, and hearing dogs. Thanks to all the hard-working staff, the puppy raisers and other volunteers, the fund raisers, the donors, and everyone else who is part of the CCI community making it possible to give dogs to qualified recipients. CCI does a remarkable job and is also a remarkably healthy organization. Thank you CCI!


Gaynor in back seat of car with gray muzzle looking very distinguished in her old age.

After many years of great service Gaynor started to tell us that she couldn’t work much longer. Finally she failed to climb some steps when out with Linda and Siobhan leaving Siobhan stranded at the top and Linda very worried. We attended a CCI graduate seminar where one of the topics was retirement and talked with CCI staff extensively before we settled on re-homing Gaynor. This was a very hard decision to make, but it was made easier when we found that a family who worked with Linda would take Gaynor. This way we could stay in touch with Gaynor and visit since she’d be living locally. The other options were to keep her or give her back to CCI. Keeping an older dog would add stress to a family already stressed to the max by caring for one family member with severe disabilities. Giving her back might mean she would live far away. We made the decision to re-home Gaynor. Thank you Cindy, David, Melanie, and Sam for giving Gaynor a place in your hearts and your home.

The Transition

We were worried about Siobhan’s reaction to life without Gaynor so we left Gaynor with Cindy, David, Melanie, and Sam on February 4, 2012, and the next day we were in team training where we met Harriet and that’s a story for another post. Where Gaynor hit her marks with ease and regularity, Harriet is a blithe spirit and part wild-live-monkey dog. Gaynor made quick work of packing up with her new family. When we went to visit a few weeks later Gaynor was not impressed with Harriet and was leaning up against Cindy like I didn’t exist. Gaynor was a leaner, when she wanted a rub she’d come lean against me. Some dogs are like that. Harriet is a leaner too.

Wagging Her Tail

Gaynor died this past Sunday. She was still eating but couldn’t get up very well on Saturday night. Her adopted family took her to emergency care Sunday and found out that she had cancer of the spleen and that a tumor had burst. They had her euthanized. She was still wagging her tail up to the end. I’ll finish this post with a photo taken on August 18, 2002, of Siobhan about to pet Gaynor. This is before Siobhan developed orthopedic problems which led to her wearing braces and big orthopedic shoes. In the photo Siobhan is in shorts and she’s wearing a Long Beach Island t-shirt sent specially by her aunt, Una, in New Jersey. Gaynor has just a bit of a resigned look in her eyes. She’d do anything for Siobhan but Siobhan’s idea of a gentle pet is a few sharp whacks. I like to think that in this picture Siobhan was very gentle with such a noble dog. Goodbye Gaynor, everyone loved you and we’ll always miss you.

Siobhan in shorts and t-shirt reaching out to pet Gaynor who looks at the camera with a calm but slightly resigned gaze.
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