Just Keep Swimming

Pressed for Time

This will have to be the short version without too many researched links because I only have a limited amount of time in which to write this post. Those of you who are caregivers for people with severe disabilities will probably appreciate this fact of life. Or maybe this is the modern human condition in general.

Adaptive Physical Education

In the #USA we have some laws: Education of all Handicapped Children Act of 1975, Americans with Disabilities Act, and the Individuals with Disabilities Education Act that essentially means that students with disabilities can join in all the reindeer games. You see, at least in the classic video Siobhan likes so much, Rudolph has a disability. His nose glows. Anyway, Siobhan was eligible for lots of services and Adaptive Physical Education (APE) was one of them. Again, pressed for time, I won’t go into all the less than effective methods of providing APE for kids who need it. Next time you’re among a crowd of severely disabled people notice how many seem fit and trim to you. I rest my case.

Swimming Achieved

One of Siobhan’s early APE teachers said that he would like to teach her to swim and he did so. Just like that. She was in school in Malibu at that time. We’re in the Santa Monica/Malibu Unified School District, just to explain how she came to attend a Malibu school. She had a long bus ride to and from the school and other aspects of it were very bad for Siobhan but Gary, the APE guy really did begin the process of teaching Siobhan to swim. This was nothing short of a miracle as far as I was concerned. Thank you Gary.

Pool Access

The next year Siobhan did not go back to Malibu, She came back into Santa Monica where it was easy to drive her to school. And we wanted her to continue her swim program which was the only part of APE that she was benefiting from. She can’t run, and she can’t jump, and she can’t kick a ball easily, but she can swim. There are some details I’m going to get wrong since I’m writing this quickly, but what I remember about this stage of events is that the school principal wanted to keep Siobhan out of the pool. If she had a bathroom accident in the pool they said they’d have to drain the pool and charge us for cleaning and replacing the water. This probably sounds familiar to other people who have been banned from facilities use because of the color of their skin, or their religion, or any number of other things. In any event, we persevered and got pool access, and Siobhan never had a bathroom accident and by the way Olympic swimmers pee in the pool all the time.

Lifelong Skill

Nobody expected that Siobhan would go on to win Special Olympics gold medals because they see her disabilities and dismiss her. This is the essence of disablism. We have had to fight for pool access ever after that, including in the present, now that she’s out of the school system, but Siobhan continues to swim four or five times a week. And she’s trim and fit. And it was all worth it. Just this week she had a tough time with two other swimmers in her lane at a public pool but she persevered. As Dory in “Finding Nemo” says: Just keep swimming, swimming, swimming, swimming, just keep swimming…

Joe and Lucy

Irish Emigrants


My mom, Lucy, was born in Tullamore, Co. Offaly, Ireland in 1921 and lived in a small house right next to a church. One wall of her house made up one of the walls of the churchyard. She had a brother, Jack, who was hit by a car when he was young, after which he was in a coma for months. What they said about Jack was that “he was not right” after that. Lucy’s dad was a baker, and her mom was somewhat of an invalid. She had what they called a milk leg. This, it turns out, is lymphedema, and it runs in the family. I have the condition in my left leg, as does one of my cousins. When she was eight years old, Lucy’s dad died, and her mom died when she was twelve. This left her to care for Jack and herself, so she went to work in a sausage factory. Her mom’s four sisters had all emigrated to New York and eventually they sent Lucy passage on a converted Liberty ship and she left Ireland in the late 40s. Later, when she had saved up enough, she sent for Jack. He described something he witnessed on that Liberty ship: “There was a storm, and you could see the two ends of the ship rising up and the middle bowing down.” It’s a wonder they lived through it all.


My dad, Joe, was born in 1917 in the kitchen of the family farm in Ballyheigue, Co. Kerry, Ireland. His mom, Mary Ann, emigrated to New York sometime after he was born, leaving him to the care of the family. He grew up wild, and would do anything to have a bit of fun. He told me about being very young and hiding in the thatched roof of a house where there was a wake in progress. He and his friend Mikey spit down on the people inside and eventually one of the women below remarked “wid a wah, it musht be raining” in a slow Kerry drawl. He talked slowly all his life, though he eventually did acquire a mild New Jersey accent later on. He fished, and helped with the farm work, and tended lobster pots and had many stories to tell about dangerous adventures at sea in a currach, which is a wood-framed tar-paper-covered canoe they made themselves. I’ve seen the waves on the wild Atlantic coast where he was raised and it’s a wonder that they lived to tell the tale. He also attended a one-room schoolhouse where the fee was a lump of coal a day or maybe some spuds. We have stayed in the Old School which has been restored beautifully on our visits to Ballyheigue and I highly recommend it. He did not come into the farm, and figuring that he’d try his hand at making some money, he went off with a friend to Dublin, then worked the sugar beets in England, and finally emigrated in the late 40s to New Jersey where his mom lived.

Joe and Lucy

At the time they arrived in the New York area, though the Irish made up a sizable portion of the population, Dad told me that when he went looking for work, there were many factories with signs that said NINA, or no Irish need apply. It also meant no Italians need apply. He did find work though and he was never without it again. He had an iron willed work ethic and seeing my somewhat less enthusiastic approach to work he said of me: “he loves his job so much he’d lay down beside it.” Nonetheless, I was also a hard worker even though he called me a “narraback” or narrow back from a lack of hard labor like cutting turf or tending lobster pots. My dad was interested in dancing and sports and meeting up with the new friends he made. Weekends saw him up in The Bronx at what they called Croke Park which was actually Gaelic Park. There, at a dance, he met Lucy. They eventually married, settled in Bergen County, New Jersey and had two children, me and my sister Una, who still lives there. Joe and Lucy are gone many years now. I’ve tried to live up to their expectations and think I have. My heart aches at missing them, but this is the way of the world. We don’t get to stay forever.

I Want Santa Claus

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.


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.

Icon: Santa Claus

Magic Moment at HeartHill Farm

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.

Dogs nip at cows heels and people walk at rear to help the cows move from field to milking parlor.
Anne with baby Anthony, Siobhan, Linda, Dan and the dogs, drive the cows.

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.

In left corner of the frame is Siobhan looking at the cow behind a set of bars is looking back at her from the right side of the frame.
Siobhan venerating the cows at milking.

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.

Siobhan holds speech generating device at chest level, pushing icons, cow visisble, baby in sling on mom.
Siobhan comments “Look!” while baby Anthony looks on.

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).

Cow Seeing

I Want To See Cows

Siobhan in rain at side of road looking at cows grazing and waiting to be let in to milking parlor.
Siobhan up close and personal with beloved 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!

Cows grazing in a cliffside field overlooking the bay with mountains in the background
Happiest cows on earth overlooking Ballyheigue Bay and the Dingle Peninsula.


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.

First screen of speech generating device with ten active icons one of that immediately says look! when pressed
The Look! icon immediately speaks when pressed


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?


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.