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.

Before The Prom

I Bought My Prom Dress

We’ve updated and upgraded the voices, from child to adult, over the years since Siobhan first started using voice output devices in 2002. Siobhan’s DynaVox Xpress uses the Susan voice by Loquendo. Susan has a bit of an attitude, as Siobhan does. Siobhan has been going around saying, with a saucy attitude, “I bought my prom dress” and showing everyone the picture of her dress that comes up on the Xpress. She’s been talking up a storm about how she and her friends went shopping and about the dress and it’s a wonderful thing to see her so excited about the prom.

The Shoes

Siobhan's big orthopedic shoes painted iridescent blue with applied crystals and bangles and a miniature crystal bow on the very front Siobhan wears Dafo above-the-ankle braces to keep her feet straight and flat and over the braces she wears her five times wide shoes. She can’t walk safely without the braces and shoes, but the shoes are not exactly prom quality. I said that if we can’t hide the shoes, that we should emphasize them by blinging them out with crystals and doo-dads. Linda’s friend, Robin, is a powerful attorney. She is also a wonderful designer of miniatures and other constructions that evoke moods or celebrate occasions. Robin painted the shoes blue to match the dress and applied crystals and bangles. Bling!

The Legs

Yesterday, Friday May 16, in the afternoon Linda started getting text messages from Siobhan’s teacher, Ms. Keith, and from Juliana about Siobhan’s legs. Did they want us to use the Nair at school or did we want them to send it home. Linda made a quick appointment to get Siobhan’s legs waxed so at 5:30 pm we were at Queen Bee in Brentwood on trendy San Vincente Avenue. Siobhan was not happy with the waxing, not happy indeed.

The Nails

Siobhan's hand in Juliana's hand showing cobalt blue nail polish with silver glitter tips. Siobhan’s friend Juliana came over and she did Siobhan’s nails. First a coat of clear, then a coat of cobalt blue, then another coat of cobalt blue, then the coup de grâce, the silver glitter tips! Next comes the hair.

The Hair

Eileen, Juliana, and Kelly triple teaming a bedraggled SiobhanThis was quite a challenge. Siobhan’s hair is very thick and it took a while to whack it into place. At least that is the viewpoint of this humble dad. Grin.

Brave In The Attempt

Celebrating Blogging Against Disablism Day


Siobhan didn’t walk until she was three and a half. She used a walker for some time after she first walked. I remember that at first she would walk if I was touching her, and stop if I took my hand away. But she could walk. This was a wonderful thing and we appreciated it very much. Eventually she could walk on her own without a walker. Then we moved into a house with a nice backyard and she went exploring. She would spend hours in the yard. Eventually she learned to use the Picture Exchange Communication System and could communicate with us. One of the first things she asked for independently and unexpectedly was yard. It was unexpected because it was night and raining. Linda and I looked at each other. I began to protest but then I quickly got Siobhan’s raincoat on her while Linda ran around turning outdoor floodlights on, and we opened the door. Siobhan went out into the night and into the rain. Alone. Then she came back. And she was satisfied. And with that transaction we started building her trust and confidence in her own power to communicate. In the same way we are responsible for her communication needs we are also responsible for her physical needs.


We focus on what Siobhan can do and try to help her improve her skills. When we first sent her to school we met a creative adaptive physical education instructor. He was also focused on what Siobhan could do. He recommended swimming, and he was willing to get into the pool with her and begin to teach her to swim. As I write this I’m remembering so many things I’ve not thought about for a long time. Like the fact that we had to fight to get her into the school pool. There was the principal who told us that if Siobhan was allowed to use the pool and she had a bathroom accident in it that the school would charge us to drain the pool, clean it, and fill it again. Olympic athlete Michael Phelps admits that “we do pee in the pool” but we’d be liable for damages? It was a fact that no other student with disabilities was swimming. I wonder why?

Splashing Around

Most of the adaptive physical education (APE) instructors we have met have significantly different views from ours on an appropriate APE program for Siobhan. In most versions of their program they have her in the pool one week out of every six. Even that version of “in the pool” is markedly different from what she is capable of doing. The students splash around in the shallow end. The other weeks it’s back to yoga walks on the track; no resistance training, no aerobic activity. In short, no exercise. Siobhan’s peers are showing the results of this approach.

Special Olympics

Early on we also took Siobhan to Special Olympics swimming. The coaches had a good relationship with the high school swim coach who, together with the high school swim team, volunteered to help coach the participants. Here again, the approach was different than what Siobhan was capable of doing. What it amounted to was mostly swim team members giving rides to the special olympics participants who couldn’t swim on their own. It is very easy to introduce a dependency into any of Siobhan’s routines. If you give her a verbal command to turn around at the end of the lane, then she will wait for that command or worse, turn it into a game. We sometimes found volunteers who were willing to encourage Siobhan to swim on her own and to fade the physical and verbal prompting, but it was hit or miss. Eventually the high school swim coach was hired by a different school and there was no longer a cadre of young team members helping out at Special Olympics. It came down to Siobhan splashing around in the shallow end again. We stopped going.

Swim Coach

Only when we hired a swim coach to come to the school five days a week did Siobhan start to make significant progress. We were very lucky to get some smart people to work with Siobhan’s abilities who devised great ways of improving her skills. If she wasn’t reaching out with her arms enough, they had her reach for a ball on each stroke. They taught her to wear a swim cap, then goggles, then swim fins, then swim gloves. Each refinement increased her abilities, gave her more resistance to overcome, trained her to swim on her own without waiting for physical or verbal cues. We introduced PECS methodology into the training regimen. We made the symbol icons waterproof. Only physical symbols will work in the water, her voice output device is not used for this. SLPs please take note: iPad not so good underwater. Soon she was asking for the kick board or the ball by herself. When she starts her session she asks for cap, goggles, gloves and fins with icons. Now we have a well-rounded program going full steam. Communication means self-determination, physical mastery of complicated routines means Siobhan is confident in the water. She is now swimming 10 – 15 laps and can safely get in and out of the pool on her own.


Where others see Siobhan’s limitations we see skills that we encourage her to develop. When the schools refused us permission to use their pools, we were persistent, we stood firm and insisted on it. When the lifeguard was skeptical of this unusual use of her pool, we were persistent. In time, Siobhan won her over, and now the lifeguard goes out of her way to help Siobhan achieve her goals.

Brave In The Attempt

This year, when the notice came about Special Olympics swimming, Linda took Siobhan to an 8 am Saturday practice, a supreme sacrifice when all Linda wants to do is sleep late. With her peers still splashing around in the shallow end, Siobhan got in the pool and swam laps. Yay, Siobhan! The Special Olympics coach says Siobhan is good enough to try out for the first step toward possibly participating in the games. In a few weeks Linda and I and Siobhan’s skilled companion dog Harriet will be there to cheer Siobhan as she competes. I do believe she will be brave in the attempt.

Conversation at: @Blacktelephone