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 girlinwellies.com, 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.


Land Line

At home we have a POTS line. POTS stands for plain old telephone system. A POTS line when used for voice, as opposed to fax, is now commonly referred to as a land line. We have an analog telephone that gets all it’s power from the telephone system to which it is attached. The theory is that in an emergency, with all power out, we will still be able to make a telephone call with this line, such as calls to emergency medical services, or to the fire department. We also have what is known as an answering machine attached to the same line. The phone rings and if no one picks up on the fourth ring, the answering machine turns on and plays back the outgoing message. The tone sounds, and then you can leave a message of up to thirty seconds on the answering machine. I’m spelling all this out for those of you unfamiliar with concepts like POTS, land lines, answering machines, and analog phones. I know about these old timey things because as a child, my family participated in a party line phone system, but I’ve also worked in IT troubleshooting digital phone systems as a small part of my work so I am very much aware that the phone company we use has lots of services that would, for instance, eliminate the need for an answering machine. I hate the phone company we use and so engage in as few services as possible. I’m just here quietly tending my resentment garden. Move on, nothing to see.

Under Siege

We have had this phone number since 1996 when we moved into this house. We have given it out to a lot of people and services. Since we acquired cell phones we vastly prefer to receive calls on those numbers, and have spent years attempting to direct everyone to call us on our office phones or cell phones. There are some services that unerringly call the land line when we’re at work, office lines when we’re at home, and cell phones when we can’t pick up. But though they will descend to their own particular ring of hell, they are not what has us under siege. Do you know about the National Do Not Call Registry? Wonderful concept. You go to that web site and enter the phone numbers you want placed on the do not call list. Companies that comply, delete your phone number from their lists and robo dialing computers. You know that saying that goes “if phone numbers are outlawed, only criminals will have phone numbers?” No? Well, now criminals have our phone number, and I’m talking real out-and-out criminals. If there are real businesses that do not adhere to the do not call concept, they are not the thugs that are calling us. These scammers use blatant lies and cunning trickery in an attempt to defraud us. I am very afraid for people without the cognitive skills needed to deal with these scam artists. About eighteen months ago the calls started to increase in number. Now we get about six and more a day. We’re under siege.

Hog Wrassling

First I can tell you what does not work. Politely and otherwise asking how they got the number. Explaining patiently and otherwise that the number is on the do not call list. Remonstrating with the caller and asking them to please make sure to remove us from their list. Asking for a supervisor. Asking the name and location of the company calling. Asking for a dial back number in the case of those seeking identification information. The list of attempts I’ve made to quell the number of calls has only increased the number of calls. Never wrassle with a hog because you both get dirty and the hog likes it. Just the fact that a live person picked up is enough for these scammers to verify that this is a good number, a number worth keeping, and a number worth trading and selling. Chris Blasko is my hero.


Because there are a few services and people who still call the number, I held off a long time, but I finally tried a solution about two weeks ago. Now when you call our home number you hear an official sounding “this number is no longer in service” outgoing message. Complete with the official tones telling the robodialing computers to forget the number, the new outgoing message is now getting a different result than we have been getting. Previously we were getting messages that sounded like boiler rooms with lots of people in them with scammers repeating our names (Joseph? Joseph? pick up please Joseph!), and other very weird stuff on our answering machine. Now we’re getting a bit of dead air and then, as if by magic, a dial tone starts. I think this solution is working. Legitimate callers should still be able to leave a message for us but it’s doubtful that they will do so. In any event, we won’t be picking up. This will only work if we do it 100%. Hopefully, eventually, the robocalls will die out. Hopefully.

The Message File

I did some searching for the exact message that the phone company in my area code uses to warn callers that a number is no longer in service but I didn’t find one. I usually only get small blocks of time to do any given task. I did this in the car while waiting for my daughter’s aide to take her out of the car to report to work so it may not be perfect. Here’s a copy of the finished file after some trimming in QuickTime:

“We’re sorry your call CAN NOT BE COMPLETED” (.wav file, 2.5 MB)

Again, I only had a limited amount of time to edit it so I chopped off a useless intro and copied it a second time in case the computer didn’t catch the tones up front. I sampled about a dozen different files and it’s interesting to note that there are regional differences in the style and delivery of the message. However, they all use the three tone warning at the beginning of the message, and it’s that three tone warning that tells the computer to automatically remove the number. Or maybe they have their computers set to try again in case the situation is temporary. I can’t guess all the permutations so I’m just going with the idea that the computer receives the tones, and the computer deletes the number. With a human caller they most likely won’t remove the number. Doing nothing is in their best interest. Since numbers represent assets, they probably don’t want to be the one to delete an asset. I’ve determined, however, that nearly all these calls are initiated by computers.

If you want to discuss this, catch me on Twitter at @blacktelephone


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.
Please join the conversation on Twitter at @blacktelephone