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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.

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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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@blacktelephone

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Siobhan, the Soundbeam, and Disablism

Blogging Against Disablism Day, May 1st 2009Today is Blogging Against Disablism Day brought to you by Diary of a Goldfish.

“We that are strong ought to bear the infirmities of the weak…” Romans 15:1 – motto of Clipped Wings, a national organization open to all former, retired, and current United and Capital Airlines flight attendants.

In 2003, my family had the privilege of attending the family reception sponsored by Clipped Wings at theSpecial Olympics World Games in Dublin, Ireland. At that reception an award was given to Eunice Shriver and we heard a wonderful musical presentation that fully integrated musicians of all abilities. The orchestra was using traditional instruments alongside a Soundbeam 2 MIDI performance controller activated by switches and beams. When we saw the Soundbeam equipment being used by  musicians of all abilities we knew that our daughter Siobhan, a student with disabilities, could participate in mainstream instrumental music.

On YouTube there are some video resources to help you understand the Soundbeam. Though they focus more on music therapy than on mainstream music class and performance, you should get a clear picture of what the Soundbeam is and what it can do: Welcome to Soundbeam Part 1 and Welcome to Soundbeam Part 2. On YouTube you can also see Siobhan.

Since 2003, we have been unsuccessful in getting our schools to include our daughter in music. We even got our school to purchase the Soundbeam equipment, but it sits there, year after year. No one seems to have the imagination to understand what it is we saw in June 2003.

It is still our hope that Siobhan be included in mainstream music classes and performances. There is a music goal in her Individual Education Program (IEP) calling for the use of the Soundbeam. We have a four page timeline listing our begging, pleading, cajoling, demanding, asking, suggesting, interposing, meeting and otherwise chipping away at the goal month after month, year after year. For 6 years.

We’ve invited music teachers to each of the yearly IEP meetings. We had one music teacher actually sneer when we asked him to implement Siobhan’s music goal. This is Disablism at its finest. Because Siobhan doesn’t make verbal speech, because she has poor balance, because she lacks fine motor skills, she must not be able to participate. Have you ever heard a beginner violin orchestra performance? Sounds just like cats. Siobhan could have actually helped at those performances.

Disablism has been very much a part of our lives since Siobhan was born in 1992 but you know the strange thing? Out in the world people generally take Siobhan at face value. They take her order in restaurants though she uses assistive technology to “talk.” She’s known at the Saturday farmers’ market we go to each week. One farmer keeps the good grapes for her because he knows she likes them so much. The strange thing is: we usually only encounter out-and-out Disablism when interacting with school people. Now why is that?