New Year’s Eve 2006

Tragic Shooting

Before midnight this New Year’s Eve, 2013, I posted a Tweet on my @AccessibleJoe account: “Want me to tell a sad and spooky New Year’s Eve story?” The writing is disjointed because I’m copying Tweets. This is the story I told:

In 2006 there was a tragic shooting at the park a half a block from our house. One young man, Miguel Martin, was killed. As so often happens, a shrine was built on the spot with candles and balloons. The memorial persisted. People came to stand in small groups and light more candles. That New Year’s Eve there was a light fog. The air was heavy. Fog horns were blowing on the pier. Tonight we rang in the New Year by banging pots and lids on the front porch. Others were also making noise, setting off fireworks. The New Year’s Eve of 2006 our street was silent when we opened the door just before midnight.

Remember, there was a light fog. Just before midnight New Year’s Eve 2006, light fog, heavy air, silent street, we were ready to bang our pots and pans when we saw it. Coming down the street, indistinct in the fog, in the dead center of the street, the first thing I noticed was a floating ribbon. Looking up I saw a Mylar balloon with a long bit of ribbon tied to it. The ribbon end was just off the ground. That night there was no traffic. No cars were moving. Now, even at 1 am, there are two or three cars a minute. The balloon tied to the ribbon was floating our way very slowly in the dead center of the street.

We were astonished.

Psychopomp

The first thing I thought of was psychopomp: Greek mythology, a guide of souls to the place of the dead. We just stood there, rooted to the spot, in the silent street, watching the balloon make it’s way toward us very slowly, in perfect balance. I began to talk to the balloon. Go back, I said. For we had made the connection between the memorial for the young man and this balloon with a black ribbon. It seemed to hesitate, then it was apparent that it was still moving very slowly ahead.

We watched the balloon for a while, discussing what we should do. It was a symbol of disconnection, of searching. As a symbol of the spirit of the young man who was killed it was haunting to see this. I did not want to stop it. We watched until the balloon was past our house. We didn’t interfere. A symbol like that does not appear every day. Why stop it? The next morning I went out to find the balloon moored to our next door neighbor’s hedge.

Life Is Uncertain

I freed it and took it in hand. I said: you have to go back. Then I walked it up to the park, to the memorial, and anchored it well. I stood there for a while, looking at the unlit candles and the sagging balloons and the ragged stuffed animals. We sometimes talk about the floating balloon appearing like an apparition out of the fog. I think of it from time to time.

I think of the young man who was gunned down by gangsters at a park where Siobhan goes all the time and realize I can’t save her. I won’t always be here for her, but while I am I’ll do my best to shelter her, to protect her. That’s all a dad can do.

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.

Sex

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 site of the hallowed gates of Disneyland and not going in? How was that going to play?

Behavior

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.

Please join the discussion @blacktelephone.

Brave In The Attempt

Celebrating Blogging Against Disablism Day

Trust

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.

Swimming

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.

Persistence

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

Bathroom Gender

Sensitive Issue

My daughter Siobhan is 20 years old and is non-vocal. She has never been left alone. Because of her cognitive deficits she needs assistance doing very basic things. Going to the bathroom is one of them. It is a sensitive issue for Siobhan. She doesn’t always take herself to the bathroom when she needs it and because she has little expressive language Siobhan is on a bathroom schedule. (She is, however, a successful communicator.) Siobhan doesn’t like being told to go to the bathroom. One of the best purchases we’ve ever made is a portable DVD player. “How would you like to pick out a DVD?” works like a charm. Giving her a drink often helps. She likes her own bathroom at home. There are very few public bathrooms she will tolerate.

On the morning of Saturday October 27, 2012 Siobhan was at Westside Special Olympics bowling here in Santa Monica, California. Lots of people participate, hardly any of them as profoundly disabled as Siobhan. After she bowls the first game she needs to be taken to the bathroom. There is only a short break between games, so timing is tight. Just after she bowled her last frame of the first game I asked her if she had to go to the bathroom. Time was already ticking, but it’s important that I offer her the option. She signed “yes” and shook her head “no.” Typical. I took her hand and started leading the way. If she resisted then I would honor that.

Men’s Or Women’s Toilets?

Siobhan came with me and then I had a decision to make. Should I take her to the men’s or women’s toilets? This bowling alley doesn’t have a community bathroom. Heck, just this year they installed a ramp down to the bowling lanes. I took her to the men’s room. I’ve been doing this her entire life. I’ve thought about it a great deal. And what I conclude is that if I enter a women’s bathroom there might be a problem. I know that when I take her to the men’s room no one has ever complained. Until Saturday October 27, 2012 at Special Olympics bowling.

Mystery Voice

With time running short until the next game we both made it into the accessible stall. I got the door closed, Siobhan sat down, I inserted the straw into an apple juice box and gave it to her. I was fumbling with the DVD player when I heard a woman’s voice. The words were garbled because the door leading to the bowling alley was open and the lane noise was very loud. I think that the door was open because the woman didn’t want to enter a men’s room. Just as I don’t want to enter a women’s room. What I thought I heard was “Is (unintelligible) in there?” I had checked on the way to the stall we were in and the bathroom was empty. So I said “No one here by that name.”

Potential For Upset

I wish I had gotten a look at the woman so I could have engaged her in conversation afterward but Siobhan was at a crucial point in her process. Now that she had her drink and was looking at the DVD player she could relax and be successful. This is a delicate moment, one that might be upset in many ways. One way was for me to open the stall door and start having a conversation with someone in another room. We were in the bathroom, and the woman was in the bowling alley. This is technically another room. This is bad, according to Siobhan. She gets visibly upset and cries out whenever there is a conversation where she can’t see both people. She doesn’t like it, so we try not to do it. This could definitely cause her to stop cooperating.

I thought that the interchange with the woman was over, that she was looking for someone else. I was wrong. She said something else, I said no one else was in the men’s room. Then I heard her say loudly “is that a girl in there?” Well, Siobhan is 20 years old, but I knew what she meant. I said “yes.” During this part of the exchange I was really hoping that Siobhan would not take umbrage, that she wouldn’t just fly off the toilet corkscrewing her pants up and trying to barge out of the stall without zipping up.

I’m Her Attendant

Then the woman said “you can’t have a girl in there, it’s the men’s room.” I said “I’m her attendant.” She said “a woman can take her.” I’m sorry, but someone who has not been trained to take Siobhan to the bathroom cannot take her. We have lost her toilet training more than once, sometimes for long periods of time, due to bad experiences with untrained care givers. I said “it’s alright, I’ve got it.” I just wanted her to go away. At that moment, despite all the hullabaloo, Siobhan eliminated. I wiped her, turned the DVD player off, got her clothes adjusted, and we left the stall. There was no one there. We washed hands and headed back for game 2. No one stopped us, or talked with me.

Ongoing Issue

This incident brings the bathroom gender question to the forefront, an ongoing issue for Siobhan and me. Back at Special Olympics bowling the following week I just didn’t take Siobhan to the bathroom between games. I asked her and she shook her head “no.” Sometimes repeating the question will get a different response so I asked her again. Still no. The following week Linda accompanied her to bowling. This week there was no bowling due to it being Thanksgiving holiday week. Next week I’ll be back there again. If you have stories or advice, please engage me in conversation on Twitter @blacktelephone.

Morning of A Successful Communicator

Celebrating Blogging Against Disablism Day

Disablism Stops At Home

Siobhan (Sha-vonn) is 17 years old. She lives with her parents, Joseph (me) and Linda, in Santa Monica, California, USA. She attends Santa Monica High School, swims in the pool there nearly every day, and goes to occupational and physical therapy a few times a week. Siobhan has Cri-du-chat Syndrome, or Five P Minus (5p-). She is a mosaic; she has the transcription error in approximately 50 percent of her cells. Siobhan is ataxic (loss of full control of bodily movements) and hypotonic (abnormally low body tone) and she is developmentally disabled. She is also nearly completely non-verbal, but she has a communication system. None of her other classmates who need communication systems have one. I can’t help but feel that someone is selling those other students short. Disablism stops at home.

Wake Up!

“Time to get up!” says Mom. Dad goes to Siobhan’s bedroom, just off the kitchen and adjacent to an accessible bathroom. Dad releases Gaynor, Siobhan’s Canine Companions for Independence trained skilled companion dog, from her kennel in Siobhan’s room. Siobhan pulls the covers up. She shakes her head “no.” Dad uses a shaping technique to get her moving. “I have strawberries, and muffin, and cucumbers, and…” Siobhan flings off the covers and starts her day.

Picture Exchange Communication System

plastic PECS binder with plastic pages each with 4 vertical strips of velcro holding 16 to 20 one inch icons Out on the kitchen table is her Pyramid Picture Exchange Communication System (PECS) book. This is a plastic binder with plastic pages inserted into it. The pages have Velcro strips, and on those strips are 1 inch size icons printed out from Boardmaker, glued to cardboard, overlaid with clear contact paper, and with a dot of Velcro on the back. She currently has 124 icons in her book. Also in the kitchen is a large binder with hundreds of 1 inch icons already made up for replacements or to swap in as needed for additional vocabulary. Maintaining this system is truly a labor of love.

Picture Schedule

Also in the kitchen is a picture schedule. This is a tall strip, also made of plastic, with one vertical strip of Velcro. On it are icons printed out in a 2.5 inch size for readability across the room. At the bottom of the schedule is a pocket for icons that are moved off the schedule as the activity is completed. Beside the schedule is a large binder with many pages of icons for the schedule. Mom comes on the scene and rearranges Siobhan’s schedule. Siobhan is all attention. Up on the schedule goes “car” and “school” and “swim.” Then comes a picture of who will be picking her up, followed by “physical therapy” if she has that and then probably “go home.” Siobhan can tell in an instant what she will be doing during the day by checking her schedule. A picture schedule is also used for her in her classroom. You can see her interacting with her schedule on YouTube.

Communication Book

Seated at the table Siobhan glances towards the schedule, sees car first up, and then begins to assemble her first sentence of the day. She opens her book, selects the “I want” icon, and places it on the sentence strip at the bottom of the book. She quickly scans the pages to find the next word. She selects “car” and places it on the strip, takes the strip off the book, and hands it to a communicative partner, me. I take the strip and as Siobhan points to the words I say “I want car.” I immediately return the sentence strip to her while I tell her that indeed, she’ll be going to school in the car very soon. The instant she gets the strip, she’s ready with her next sentence. “I want sandwich peanut butter.” That’s three icons. Siobhan rarely makes sentences with more than three icons. Syntax is flexible; though she always starts with a sentence starter such as “I want”, she omits articles and we tolerate “sandwich peanut butter” instead of insisting on “peanut butter sandwich.”

The Look

She usually follows up with “the look” which is one of intense concentration. She’s always had an effective way of communicating with her eyes, and this compelling gaze usually makes us hop to it. Grin!

Voice Output Device

Mom also takes Siobhan’s Dynavox MT4 (discontinued) off the charger, turns it on, and places it on the table in front of Siobhan. The communication book requires no batteries to run but is limited in the number of icons it can hold. It requires a communicative partner who is willing to take the sentence strip and read the icons, which have both pictures and words printed on them. The MT4 is a Voice Output Device or VOD. The MT4 is equipped with a touch screen, thousands of icons, powerful speakers, and a battery that lasts a good part of the day. Unlike the sentence strip that needs mediation, it gives Siobhan an immediately perceptible voice. We have arranged the pages in the VOD to approximate the communication book. We are using the same PECS methodology in both platforms. It is very important to have a methodology in place when moving to a VOD. See my CSUN 2009 presentation for details.  We have changed the voice over the years to approximate Siobhan’s age. Currently Siobhan is using “Ursula” with a pitch of 37 and a volume of 73 in normal circumstances. The volume is raised and lowered to match her surroundings.

Communicating

As soon as the MT4 is in front of her, Siobhan turns it on. She hovers over the start sequence, excited to start talking. A flurry of sentences then come from the MT4 and from her communication book. Dad prepares her breakfast and Siobhan lets him know what’s missing. “I want grapes,” says the VOD, as she holds up a sentence strip that says “I want purse.” Siobhan has a mania for Mom’s purses. She asks Dad for purse all the time. Repeatedly. “I want cucumber.” “You already have cucumber in front of you” says Dad. “Cucumber.” “I want broccoli” with the VOD followed by “I want chicken” followed by a sentence strip “I want car” and for good measure another “I want purse.”

VOD and PECS

Siobhan uses both the VOD and the communication book almost interchangeably, though she comments almost exclusively with the VOD. Commenting on the VOD is enhanced by the use of Dynabooks – spring-loaded pictures that speak. We take a photograph and insert it into the MT4 – through what can only be described as a byzantine interface – and make the picture into a full page spread with speakable text that launches when Siobhan presses the appropriate icon.

Reinforcer-Based

PECS was designed to teach communication initiation by being reinforcer-based. There has to be a reward for communicating. You have to have what Siobhan wants in order to form the basis for communication. When Siobhan sees the picture of her godmother’s new baby and the VOD says “I gave Juliet a kiss, I love Juliet” that’s her reward for commenting. Siobhan lovingly gazes at the picture of herself kissing Juliet. And then she goes back and presses it again. Siobhan is rewarded, and we are rewarded by seeing her smile and she’s interacting with us a bit by commenting.

Picture Perfect

And so the morning hums along, Dad busily acting as short-order cook, Mom trying to wake up with very strong tea, Gaynor being fed and let outside to “Hurry!” and Siobhan all the while eating and commenting and putting in her orders. “I want crackers.” “Do it yourself” says Mom. Siobhan laughs because she knows that Dad will rescue her and give her some crackers. “I want crackers” says Siobhan. Dad delivers. He mostly always delivers. “I want leash” says Siobhan. She means Gaynor. She loves Gaynor. Siobhan pulls us all in for a group hug. Meanwhile, because Siobhan asked for it by name, the Lion King soundtrack is playing. It’s enough to drive one mad but the point is that she asked for it specifically with her own voice. By the way, we have words for the songs that are different than the original lyrics. Siobhan also asks for Cabaret. Cabaret! She’s very specific. Major win! “Two Ladies” is playing now. Gaynor is dancing with Linda. Siobhan is asking for the purse again. And this is a typical morning in the life of a successful communicator. I can’t imagine anything better.

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