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.
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.
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 theÂ time of year and the passing of seasons. She is elemental. She is smart.
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 inÂ 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 thatÂ Siobhan wants to talk aboutÂ Santa at Solstice time? Well, perhapsÂ 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 longÂ 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 fromÂ her SGDs. Turns out Siobhan hit that button 112 times since then.Â Now at Solstice time Siobhan will be able to join in all the reindeer games, talking aboutÂ Santa, and lights, and things that make the season merry.