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.

The Prom Dress

Siobhan in a purple old-lady dress with racks of clothes and a guy talking on the phone in the background.
Siobhan in purple, not the right dress

A Sparkly Dress

Siobhan’s friends Aoife, Lauren, and Juliana decided that she is going to the prom. They announced this to us several weeks ago. This past Saturday, Lauren and Juliana came to take Siobhan to downtown Los Angeles to find a dress. A sparkly dress. This is a quintessentially LA thing to do. Those in the know would never think of going to a mall for something as important as a quinceañera or prom dress. For serious shopping you have to “go downtown LA” to the shops on Los Angeles Street or Santee Alley, the fashion district. Juliana said: “We have a bit of a shopping addiction.” Lauren agreed. These are exactly the friends you want leading the way when you buy your prom dress!

Siobhan and Lauren, Siobhan in a pale green dress with a sparkly waist and sheer netting straps with lots of sparkles.
Siobhan and Lauren, dress with more sparkles, not quite right yet

The Mom

Before they left, Linda brought out a dress for Juliana and Lauren to look at to see if it would do as a prom dress. They were very diplomatic, but said “Siobhan needs something a bit more sparkly.” Linda proposed tagging along, but from a distance. Linda was thinking that downtown meant downtown Santa Monica, and that she could easily follow a distance behind them on the Third Street Promenade or the Santa Monica mall and swoop in to help make the final decision. Again, Juliana and Lauren were very diplomatic, but they didn’t think that was necessary. Lauren and Juliana said they would gladly send text messages with pictures. Off they went, three friends out for a day of shopping.

Juliana, Siobhan, and Lauren eating M&M ice cream sandwiches
Juliana, Siobhan, and Lauren with dessert

Shopping, Lunch, Success!

Some time elapsed and Linda got the first pictures from the search. They were making progress, trying on dresses and rejecting them, but texting pictures of some of them. During this process I heard cries of delight as Linda got another picture and I was called on to witness it. Finally, late in the afternoon, they found the dress, a cobalt blue sparkly dress, the skirt all puffed out with crinoline. Then they came home very excited to show it to us. The trip lasted about seven hours. Siobhan was so tired she was lobbying to go to bed early that night and even went to bed early the next night too, just for good measure. Now that’s a shopping trip! There’s more excitement ahead. We have to arrange for a limo or rent a classic car or something. Corsages, OMG! Do they wear corsages on their wrists? Will Siobhan tolerate a corsage on her wrist? There’s more to this story! Oh, and by-the-way, disablism? No disablism here!

Siobhan in a cobalt blue sparkly dress in front of a mirror showing straps at one shoulder
Siobhan in her sparkly prom dress!

Detective Work

Siobhan Turns 21

Dog wearing nor'wester rain suit at the wheel of a boat with wild waves crashing against the rail

The Sailor Dog

Born at sea in the teeth of a gale, the sailor was a dog. Scuppers was his name.Margaret Wise Brown, Garth Williams, Golden Press, 1953

During a fearsome thunderstorm, after a 49 hour labor, Siobhan was born on the evening of July 17, 1992 in Montour Falls, New York. We finally had our baby. After an incredibly draining ordeal like that we were ready to order up a steak dinner, but the kitchen was closed. Order a pizza? The town was shut up tight, no pizza. They scrounged around and found us one tuna-stuffed tomato. Linda got the tuna, I got the inedible tomato. Expectations were in free-fall already.


At the appropriate time during the pregnancy we had amniocentesis, a process where fetal cells are examined for chromosomal abnormalities. Of the list of abnormalities checked for during the test, none were found. Before the test, the doctor talked with us about our chances for having a child with abnormalities. She also asked us if we wanted to know the sex of the child. Linda said no. I said yes. When the time came, I was told, and Linda was not. Thus began a period of time during which I had every conversation and made every plan as if I didn’t know the sex. Circumcision was discussed. At length. LOL. Used baby clothes were offered, should we accept very nice clothes for a girl? I said, why not? we can always pass them on if not appropriate. Names were discussed, and two names were picked. I never revealed what I knew, even to the point of waiting until the nurse announced it to Linda after the birth. This level of fortitude on my part was to prove vital for the next stage of events.

Hatching My Egg

The Emperor Penguin female lays one egg and the male spends the winter incubating the egg in his brood pouch, balancing it on the tops of his feet in indescribably harsh conditions for 64 consecutive days until hatching. I am hatching my egg, but the incubation period has lasted longer than 21 years. I’ll be hatching my egg forever. Well, not actually forever, but that is a future phase of life and another story to tell when it comes.

It Takes A Village

Indeed, it does take a village to raise a child, but the village Siobhan requires is vast and very complicated. Many of the villagers do not live in our home. In fact, there are only two villagers here, Linda and me. Well, there’s Harriet, Siobhan’s Canine Companions for Independence skilled companion dog. And there’s Achoo! the Tonkinese cat. Dog and cat notwithstanding, Linda and I are it. Living with Siobhan means seemingly endless labor and minute details, it really is quite intense for two people. Constant observation and interpretation are especially required.

Detective Work

Interacting with a non-vocal person requires detective work. This story is one that I think will illustrate our methods. Siobhan went out with some friends last weekend. They went to Downtown Disney, a never-never land between Disneyland and California Adventure in Anaheim, California. I could tell before Siobhan went that there would be trouble. Being within sight of the hallowed gates of Disneyland and not going in? How was that going to play?


During her stay in Downtown Disney Siobhan was yawning a lot. She’s very cute when she yawns, patting her mouth with her hand. Her companion concluded that Siobhan was tired during the outing. Siobhan has not taken a nap since she was two. She is never tired. I took the yawning as a sign of disaffection and I said as much. Siobhan went rummaging looking for something while I was talking with Linda and the person who accompanied Siobhan. She didn’t find what she wanted so she used her talker. I want train, she said, using the generic train icon, and I immediately made the connection. Of course, she wanted the Disneyland train, she wanted to be in the park, and on the train. Then Siobhan pouted. She almost never pouts, but there was the lip, her eyes misty. It was out in the open. She was disappointed that she was so close and yet so far away from her love object. Linda dug out what Siobhan was looking for, her Disneyland PECS page and Siobhan said “I want train” with the Disneyland train icon. Mystery solved. We found Disneyland train videos on YouTube on Siobhan’s iPad, and she sat there entranced for a long time and she found more ride videos on her own and played them over and over.

Birthday Present

Siobhan does not love things. Stuffed toys? Games? Never has interacted with them. She does not read, so although I believe she gets something out of birthday cards, they are inaccessible to her. What Siobhan loves is experiences. One Christmas we got her a suitcase, something she really needed, but the suitcase came with an immediate, that morning, instant trip to San Diego on the Amtrak Surfliner. We have been discussing a trip to Las Vegas for her 21st birthday. She loves car trips with Linda and Harriet and me. She loves the Bellagio. But after determining that she was disappointed about not going to Disneyland, we knew what her birthday present should be. This Sunday I will take Siobhan and Harriet to Disneyland. We’ve already added a whole page of ride icons to her talker, and she immediately began using all of them. This is a big win for teaching vocabulary. PECS is a reinforcer based system, and powerful reinforcers make learning easy. To quote Mary Poppins: “And snap! the job’s a game!” It’ll be a real pleasure to experience her joy at being back at Disneyland (we used to be regulars) and it is a pleasure to be hatching my egg.

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