Category: Siobhan

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.

Vocabulary

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.

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.

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.

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.

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).

I Want To See 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!

Look!

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.

Voices

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?

Pounding

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.