Bobby and me and some way cool vintage cars!

My profoundly autistic brother, Bobby, was born on July 4. He is my wonderful Independence Day birthday guy who loves American cars from the 1950s, making grape jelly sandwiches, petting cats and going on long walks with his caregivers. Or, as George M. Cohan’s song goes, he is a real-live representation of our country, a Yankee Doodle Dandy:

I’m a Yankee Doodle Dandy,
A Yankee Doodle, do or die;
A real live nephew of my Uncle Sam,
Born on the Fourth of July . . .    

As Bobby’s representative payee for his government benefits, I received a curious letter from the Social Security Administration the other day. In 13 pages of boiler-plate bureaucratese, the letter announced that they would be reducing Bobby’s Supplemental Security Income (SSI) benefits from $683 per month to $427. Combined with his Social Security benefits, he will now be living on $874 per month.

The reason for this reduction?

“He is living independently with cooking facilities.” (page 2, paragraph 4, Notice of Planned Action)

Ah, yes, independence. There’s that “interesting” word again that has followed Bobby around his entire almost-54-years. And in the hands of a government agency, no less!

What prompted the Social Security Administration to label my autistic brother as “living independently?”

******************

Six months ago, after caring for Bobby at home his entire life, our 77-year-old Mom did the unthinkable: she got sick. Not “I got the sniffles and need to rest in bed” kind of sick, but really sick. Think nursing home for two months, pneumonia, falling down, broken bones kind of sick.

Once out of the nursing home, Mom faced a dilemma. While her spirit and heart were still willing to continue with the day-to-day challenges of caring for her disabled son, her body was sending her a painfully clear message: Time to pass the caregiving baton on to a more able-bodied crew.

And this is where our mad scramble to find Bobby a new, safe living arrangement began. As you might have guessed, it is not easy finding living accommodations for a middle-aged, low-verbal, cognitively impaired autistic man who requires round-the-clock protective supervision and care, especially in the midst of the worst economic downturn our country has seen in generations. There was literally no room at the inn. In Bobby’s community, state-licensed board and care homes for the developmentally disabled are full, some with long waiting lists.

Fortunately for us and Bobby, we found out about a different model of care called “supported living.” Supported living is particularly well suited for people with developmental disabilities who oftentimes do better with individualized care as opposed to a group home or institutionalized setting. Because Bobby has difficulty communicating, socializing and assimilating sensory stimuli (common autism characteristics), he needs a home where his caregivers can regulate the environment for him. This helps prevent sensory overload which can lead him to withdraw within himself into an almost catatonic, self-absorbed state, or which can lead him to perform self-injurious behaviors such as hitting his head or peeling the skin off his fingers.

Basically, what this means for Bobby is that he moved out of Mom’s house and into his own apartment this past April. Trained caregivers from his supported living agency are with him 24 hours a day providing him with assistance in all activities of daily living. It now takes a team of 6 caregivers working individual shifts with Bobby to do the work Mom has been doing for over 50 years, a fact which brings a knowing smile to her face each time I mention it.

It is this transition from living with Mom to living in a supported living situation that has triggered Social Security’s new definition of Bobby’s existence: living independently.

I find it fascinating how human beings can play with words. I am equally intrigued and befuddled as to how a change in Bobby’s living arrangements equates to him achieving a level of independence from his lifelong condition of autism that will reduce his benefits by over 20%. Given that it takes a whole team of people to care for him, living independently is the last phrase I would have associated with Bobby.

After thoroughly reviewing the letter and finding no real answer to my puzzlement, I have decided to file an appeal in hopes that Social Security will enlighten me and perhaps reverse this unusual labeling of my autistic brother and return his benefits. Given the poor economy and the “we mean business” tone of their letter, I am not entirely optimistic that they will change their decision, although I will advocate strongly that they do so.

In all my years of caring for Bobby, I have never forgotten that he has lived his life as a disabled American through the hard work of other Americans. The costs of Bobby’s food, clothing, shelter, medical needs and caregivers are paid for through a variety of state and federal government agencies, all funded by the American tax payer.

During these times when so many families are making do with less and so many young people are graduating from school knowing they are inheriting the huge debts of the previous generation, I am deeply humbled by this truth regarding my disabled brother’s existence.

So, when Social Security sends me a letter saying they are cutting Bobby’s benefits because he is now “living independently,” I have mixed feelings. On one hand, I am enormously grateful that he is receiving any benefits at all. His benefits are linked to our father’s work record — our father who worked low wage, night-shift jobs so he could be home during the day to help Mom care for Bobby. Bobby has benefitted many, many times beyond what Dad contributed to the system.

But, still, the question remains: How will my brother live on $874 a month? Beats me.

Well, actually, no, I take that back. I know exactly how he will live. The things he needs to survive will show up in his life at just the right time. His social worker will visit him and just happen to have an extra pair of shoes lying around that fit Bobby perfectly. His favorite behavioral aide will take up a collection at her church for extra canned goods to fill his pantry. Mom (who is living on Social Security widow’s benefits) will wrap up the coins from her coin jar and offer them as a gift. People in our rural, low-income community will give what they can in goods or services or a kind word. I know this because this is what they have done in the past for Bobby and for the many other disabled people in our region. Somehow, Bobby will get by.

Luckily for us, Bobby has always seemed content with the simple things in life and this is a good thing as things will be getting a whole lot simpler if Social Security’s curious definition of his independence prevails. Now some might say “living in poverty” might be a more accurate description of Bobby’s predicament, but I’ve decided to take a cue from my government and redefine language a bit. So, “living simply” will be the new euphemism around Bobby’s apartment, representing a challenge we will undertake as we have every other challenge in his life.

But here is one last point I want you to ponder: Bobby’s autism has outlasted the good health of his parents and I believe my family’s situation is a harbinger of what our nation will face in the decades to come. While Bobby is an older, autistic person, there are many younger ones marching steadily behind him. Parents of those individuals on the lower end of the autism spectrum have difficult questions to answer. Questions like: Who will care for your adult autistic child when you can no longer do so? Do you envision yourself caring for your child at home in your 70s and 80s (as my parents did for Bobby)?

If supported living is the care model of the future, how will the beleaguered American taxpayer foot the bill for this? At what point will our priorities switch from predator drones and killing our “enemies” overseas to taking care of our own? Will prosperity return to our country in time to care for the enormous number of autistic children who will soon transition into adulthood? These are the questions that keep me up at night.

**********

Bobby, however, knows nothing of my sleepless nights. Out of the 50 to 100 words that he can say on a consistent basis, many of them are car related. “Ford, Mustang, Chevrolet, Buick, Cadillac . . . ” He loves the  good, solid American-built cars of the 1950s. So, it’s appropriate on his birthday each year that we take him to our town’s local Fourth of July celebration where he can wander through the antique car display. He thinks the Independence Day celebration is for him and indeed we tell him that it is. It’s a little white lie, but I don’t think it matters.

I’ve decided to take a holiday from the news. I am getting depressed so I am turning off the tube, abstaining from Internet news sites, refusing to fetch my area’s daily rag off the front porch, switching to all-music jazz radio, culling from my podcast account all but “A Prairie Home Companion” (the news from Lake Wobegone does not count since it is a fictional place, plus I like Garrison’s voice).

The day’s tragedies will need to continue without my knowing about them. Good people will be victimized, riots will happen, earthquakes will decimate another village in Italy, entire economies will collapse, a politician will pontificate about “hope and change,” and I will remain intentionally oblivious.

I am taking a hiatus from my beloved “The Daily Show” with Jon Stewart. I will miss Anderson Cooper’s 360 degrees of silver hair, smirky grin and hilarious giggle. Rachel Maddow will need to clutch her pen and look sincerely into the camera knowing that I will not be in her audience.

No more TMZ updates on which celebs are in rehab. People Magazine can talk about Jessica Simpson’s struggles with baby weight gain all they want, I will not be reading.

I might even stop using Facebook as my friends’ news is beginning to depress me as well. In between pics of their outings to the local pancake house and graduation announcements I have noticed a disturbing trend: the shockingly brief “bad news snippet” infiltration.

I am now seeing bad news snippets like: “Sis died today.” That’s it — just 3 words with no background, no explanation. Was “Sis” your dog, your imaginary friend or your real sister? I scour the timeline looking for previous references of a lingering illness, accident or calamity that would account for “Sis’s” sudden demise. Finding none, I am wracked with indecision on what emotion I should be feeling. Should I feel my friend’s loss and mourn for Sis — whom I’ve never met and could be a house plant for all I know? Three tiny, unexplained words and now my day sucks!

I will make a modification to my no-news stance for Open Salon, my alternate blogging site. I am programming my Open Salon search filter to seek out posts with the following upbeat key words and phrases: “I Never Had Cancer and Never Will,” “Fond Recollections of My Religious Upbringing in a Cult-Like Environment,” “How I Won the Lottery and So Can YOU!!”, “Rainbows,” “Puppies,” “Kittens,”"Free Beer” and (this one might be a stretch), “All SPAM Permanently Blocked From the Internet — People Rejoice in the Streets!”

For all the news I consume, I feel I am the most uninformed person on the planet. I cannot tell you the capitals of all the countries and I cannot locate most countries on the world map if my life depended on it. I have spent so much time trying to keep “current” that more useful knowledge has been pushed out of my brain and replaced with news teasers, salacious headlines, Angry Birds and YouTube dancing babies.

So now I’ve made a resolution. I am unplugging from the news world and reconnecting with me. I am going to finish reading my tattered copy of Ayn Rand’s Atlas Shrugged because I really do want to find out who John Galt was. I’m going to dust off my almanac and learn about the shape and composition of our planet’s land masses, oceans and rivers. To stave off my news overload anxiety, I am going to learn about and listen to more jazz and blues, which I believe is the music of the soul I am trying to reconnect with.

And at some point when I return to the news-generating world, I hope to be a more discerning consumer. I envision myself on a trimmed-down news diet. I will allow myself a few small treats each day, but will refuse the temptation to gorge myself on the 24/7 news and update buffet. Before consuming, I will judge news on its potential impact to my brain and my psychological well-being. I will search out news sources that keep me alert and informed and pose questions that don’t have easy answers. When I push my chair away from my desk, my aim is to be invigorated and engaged, not woozy and bloated.

Wish me luck. I’ll let you know how my experiment works out.

Dad, November 2005: A few months after he started falling but before the first stroke.

 


The first time I saw my father fall, the image of the scarecrow in The Wizard of Oz flashed across my mind. Dad fell, arms and legs flailing in seemingly impossible directions, landing squarely with a thump on his backside. One minute we were walking side-by-side outside his apartment building in San Diego, the next he was on the ground upended by a small bump in the sidewalk.

“Good God, what happened!?” I kneeled next to him. “Are you OK? Are you hurt? Do you need help?”

“I’m fine!” He pushed aside my hand. “Leave me alone! I can get up myself!”

And with that, he did his best Ray Bolger scarecrow impersonation, literally bounding up from a seated position on the sidewalk to standing with both feet solidly underneath him. He brushed himself off, gave me a satisfied grin and set off jauntily down the street.

For four steps, that is. And then he fell again. A plume of dirt swirled around him as he fell hard on his knees in a weedy patch in his neighbor’s front yard.

“Dad, you are NOT OK! Do not get up! Let me get some help.”

A bead of sweat trickled down his forehead. A rip in his pants revealed blood on his left knee. His breath came in short gasps.

I turned to approach the neighbor’s front door but only made it halfway down the walkway before I heard a groan and a scraping sound on the pavement. Dad was on his feet again, dragging his left leg in an ungainly maneuver that resembled a prisoner dragging a ball and chain. This time he managed three hobbled steps before ricocheting off the trunk of a palm tree and back down to earth. This is where he lay for the next 20 minutes, his rebounding scarecrow impersonation finally brought to a close.

By this time the commotion of Dad’s multiple falls had alerted neighbors and curious passersby to his predicament. A sympathetic crowd gathered and he received numerous offers of help. Two enthusiastic young muscular guys offered to carry him directly into his ground floor apartment which was only a few hundred feet away. At about 150 lbs, Dad would be an easy carry they claimed. One fellow even demonstrated on his friend the fireman’s carry he proposed to use to lift Dad off the ground and across his back. Just like soldiers do for wounded buddies, he said.

To the severe disappointment of the would-be soldiers, Dad rebuffed their offer of assistance, letting them know in emphatic terms that he was not wounded nor were they his buddies.

One neighbor lady came out with her grandma’s wheelchair (presumably grandma was inside taking a nap) and offered to wheel him to his apartment. Again, Dad met this good Samaritan with a vociferous rejection. Several people offered to call 9-1-1 on their cell phones to have the paramedics come out to give him and his banged-up knee a quick once over. This was the option I advocated as the most prudent choice.

Dad’s resistance boiled over. He pointed to the wheelchair lady. “You touch me and I’ll sue you!” He pointed to the cell phone contingent. “You call anyone and I’ll sue you for that, too!”

The rage in his voice and the threat of lawsuits had the desired effect. The crowd slinked back and I was left alone on the sidewalk on a hot afternoon with a frightened 76 year-old man who had fallen in front of his daughter, not once but three times, and who had no idea how he was going to get himself back up.

Well, after some trial and error and some time to compose ourselves, Dad and I did figure out how to get him back up and into his apartment. Through our combined efforts of using me as a “human crutch” (something I would learn in the coming caregiving years was an extraordinarily foolish thing for me to have allowed as it put me in peril of injuring myself and simultaneously exacerbating Dad’s injury), we managed to stagger our way to my nearby parked car where we gingerly deposited him in the passenger seat. I then drove up to the parking spot right in front of his apartment door.

The rest is a blur as far as exactly how Dad dragged himself through the front door and to his bedroom. I do recall it entailing a good deal of perspiration, stumbling, choice words and a few banged elbows as he maneuvered himself through the living room and down the narrow hallway – clutching at door frames, cabinetry, furniture, the stray family member – and eventually plopped himself down in exhaustion onto his bed.

Although I didn’t know it at the time, this was just the first falling episode I would witness in many more to come for Dad. Over the ensuing 5 years, my ignorance in how to handle such situations changed with experience and I became a veteran of what I call “The Falling Years” of caregiving for my ailing father.

During this time, Dad’s reliance on tools and mechanical devices to keep him safe and upright (and eventually just safe when upright was no longer an option) increased. I’ve identified three stages Dad went through based on the tools we used in his caregiving. I call these stages: “Fall, Falling and Fallen.”

The Fall Stage

The Fall Stage is when Dad would fall but was able to recover mobility within a short period of time. This stage lasted about a year. Initially, I thought his first fall was that fateful day in San Diego when I was with him outside his apartment building. I later found out from Mom and various neighbors that Dad’s falling was becoming a regular thing. He fell outside the local grocery store and scraped the palm of his hand. He tripped inside the apartment late at night on his way to use the bathroom.

Dad denied that his falling was a problem and refused to consult a doctor. He claimed people fell all the time, they got up, shook it off and went about their business. Just part of life, right?

The one concession Dad made in acknowledging his change in mobility was to purchase a cane at the local Rite Aid. It was a simple brown, wooden stick sort of cane with a rubber tip and handle. Nothing fancy, but it got the job done. The downside to the cane was there wasn’t any way to prop it up when it wasn’t in use, so frequently it ended on the floor, becoming a trip hazard for Dad or anyone else who happened to be passing by. That’s when he moved up the ladder of mobility devices and discovered the quad cane . . .

The quad cane: This four-footed cane served Dad well. He could stand it up next to his chair or bedside within easy reach. The mechanism at the bottom allowed him to adjust the height. This surprisingly light-weight cane provided him with good stability.

The Falling Stage

Dad used his quad cane for almost a year before it became apparent that even this trusty device couldn’t keep him upright. In 2006, he stumbled and broke a bone in his foot, which necessitated a trip to the emergency room, lots of x-rays, tests and appointments with doctors and physical therapists. The following year he fell and broke his right arm.

Dad was in the Falling Stage for about three years. I lost track of the number of times he fell during this stage. He would fall getting up out of bed, he would fall in the shower, he would fall because he was on too much blood pressure medication, he would fall because he was on too little blood pressure medication.

He was diagnosed with advanced prostate cancer and underwent Lupron injections which made him woozy and lethargic. He had osteoporosis which made his bones brittle and susceptible to breakage. He had TIAs (transient ischemic attacks). These “mini strokes” left him temporarily confused and unable to walk or speak clearly. The ambulance would rush him to the emergency room and we would wait until the doctors cleared him to go home, knowing that the next episode might be the real deal, a debilitating stroke.

Other times his falls were quick and he would recover in minutes with no seeming lasting effects. His doctor called these “drop attacks” and the follow-up treatment usually meant a change in blood pressure medication. When we realized we needed outside help in caring for Dad, Mom and I hired caregivers to come into the home and help him shower and do his physical therapy exercises. Dad balked at this outside help and was known to give his helpers “a bit of a hard time” (his exact words).

There was simply no end to the manner and situations in which Dad would fall. He spent so much time on the floor he would jokingly remind Mom when it was time to get the carpets cleaned. His physical therapist taught Mom and me fall recovery techniques that we could use to assist him to get off the ground and back into a chair without harming him or ourselves. We learned which falls needed a 9-1-1 call and which just needed a helping hand and a comforting word.

Falling was no longer a novelty and no longer something we could prevent no matter how many doctors we consulted nor how many treatments we sought for Dad. It was a fact of life.

As Dad’s illnesses progressed, we purchased and learned to use an ever wider variety of safety and mobility devices:

Simple walker: Notice the animal print tennis balls used on the back legs. Dad got a kick out of those and every physical therapist he worked with always commented on them. I liked this walker because it was sturdy and light and folded up neatly for easy transport in my car.

Fancy-Dan Walker: I called this Dad’s “fancy-dan walker.” While he never relished the idea of any mobility tools, he did admit a fondness for this particular walker. He loved the attached basket, which allowed him to go on grocery shopping excursions with Mom and bring home small items. It also had brakes, a seat and folded up well for travel. (Photo by Marc Linn)

Simple shower chair: How do you safely shower someone who is prone to falling? I discovered a whole world of shower chairs online and at the local medical supply store. Dad went on a “shower strike” when I brought this one home. It took a whole lot of coaxing and a few stinky days before he acquiesced and allowed us to help him with his showers.

Shower bench: After Dad’s first stroke, he was weak and couldn’t safely step in and out of the tub to use the shower chair. This shower bench solved the problem. It fit over the tub and allowed us to transfer him from his wheelchair directly to the shower bench without him stepping into the tub. Once seated on the bench, he could turn and move his legs into the tub and scoot over to the middle of the bench. As he regained some strength, he was able to stand and hold onto the grab bar for a short time for a quick rinse-off. Not shown in this photo is a hand-held shower head with a long hose, an essential tool when showering someone who is sitting.

Transport wheelchair: The wheelchair thing was a challenge. I’m petite and knew I couldn’t fold up and muscle a heavy wheelchair into the back of my SUV. Since I was on my own when taking Dad to most of his medical appointments, I needed something I could handle myself. I found this fire engine red transport chair online for about $150. It came with brakes, removable foot rests, folded up easily and weighed a nifty 23 lbs! Yes, I know I sound like a commercial, but when you’re faced with one caregiving dilemma after another it’s kinda nice to have something to be happy about and this fit the bill for me.

Also, the lightweight aluminum design made it easy for Dad to use the chair around the house without assistance. He basically “walked” himself from room to room while sitting in the chair. It turned out to be good exercise for his legs and he got pretty zippy at it, too!

Gait belt: I learned about gait belts from Dad’s physical therapist, Claire. (As an aside, physical and occupational therapists are FABULOUS sources for good caregiving tips.). A gait belt is used by the caregiver to safely transfer someone with limited mobility from one position to another (such as from the bed to the wheelchair and back). I used this gait belt, along with the “squat-pivot technique” that I learned from Claire to do transfers with Dad. We also used it to provide support and balance while he was learning to walk again.

Evil commode chair: This was a complete and utter failure. A fiasco, a source of irritation, anger and venom for Dad. He hated the commode chair (or, more succinctly, what it symbolized about the stage of life he was in) and steadfastly refused to use it.

No amount of coaxing, begging, pleading or bribery on our part could get him to change his mind. His illnesses took away a lot from him, but they did not take away his ability to form opinions and stick to them. Even when it annoyed me, I sort of admired that about him. We banished the offending chair and stocked up on Depends.

I can’t believe I bought an SUV: My “anti-SUV” attitude changed the minute I slipped behind the wheel of this baby. In 2006, I got rid of my sedan and purchased an amazing Honda Pilot that could accommodate a wheelchair, a walker, a cane, a load of groceries, Mom, Dad, me and a couple other passengers. We tooled around in spacious comfort, taking advantage of our new-found freedom by exploring San Diego on many a pleasant ride. (Photo by Marc Linn)

And the outings we would go on . . . : Here we are in Coronado, CA, 2006. (Photo by Marc Linn)

Handicapped parking permit: It was a happy day when this arrived in the mail. I could finally park in the handicap spots when taking Dad out. In 2007, we moved from San Diego to Northern California (a decidedly rainy part of the state), so snagging a handicapped parking spot near the front door of a doctor’s office or restaurant on a blustery day made outings easier.

The Fallen Stage

Dad was in this stage the last 10 months of his life. This was the time immediately after his second stroke when no amount of mobility devices or contraptions or caregiver training would allow his family to safely care for him at home. He was down for the count. He knew it and so did we.

I visited him in the nursing home at least 3 times a week, sometimes more. We made the most of the time together. There were good days and bad, days when he would recognize me and days when he wouldn’t. Some visits I would spend the time holding his hand and not saying much. I’d wheel him out to the courtyard garden and he’d seem satisfied to look at the flowers and listen to the birds and doze in the sun.

And toward the end, to my amazement, he was still falling. My father — who could no longer walk, could no longer stand, could no longer speak or feed himself or do any activity unassisted — was continuing to fall. He would slide out from his wheelchair as if some invisible force were tugging on his feet, pulling him to the ground. The CNAs would run to his aid and prop him back up only to have him slowly slither out of his chair a few minutes later. Other times he would lean forward and nearly topple out. The nurses attached a padded safety cushion called a “lap buddy” to the front of his chair and an alarm to the back. Neither of these safeguards changed the course of his trajectory, which was now always down, down, down.

**********************

In the darkest hours before morning twilight, the earth’s magnetic pull seems to have its strongest effect on the dying. One night, a few weeks before his death, the nurses found Dad on the floor next to his bed, uninjured and sleeping soundly, his sheets and blankets wrapped around him like a cocoon. I like that image of him and take great comfort in the thought of him no longer fighting against the fall, no longer afraid of falling, just swaddled and peaceful and accepting, just fallen.

Empty chair, March 2011: Dad’s well-used chair shortly after his passing. We kept the chair but gave the new box of Depends to the local American Cancer Society. The nice lady there said they have clients who have difficulty paying for their supplies, so this was a welcomed donation.

(All photos by Elizabeth Blessing, except where noted.)

"Mamacita," my little Mama, many years ago on a sunny day.

It’s around midnight and my almost 77-year-old Mamacita phones me from her room at St. Joseph Hospital.

“A-lee-sa-bet,” she says my name in a whisper, her soft voice floating into my ear in the melodious tones of her native Spanish. “I have to pass gas and I do not want to offend the other woman in my room who is named Alma or the nurses who have been so kind to me. Still, it is very hard to hold. My stomach feels like a rock and I would very much like to expel some gas, but that would be very rude. Also, I do not have any air spray so I cannot hide the aroma afterwards. What should I do?”

I rub the sleep from my eyes, pondering the etiquette of gas passing when you are a well-mannered, elderly Hispanic woman who is in a hospital recovering from a serious illness.

“Well, Mamacita, I think you should just fart and be done with it.”

There is a pause before she responds.

“Oh, I do not think I could do that! I guarantee you it will be smelly and it will be loud. It will wake Alma!” She says the name again to emphasize her point. “ALMA!!”

Ah, yes, dear Alma! I had met Alma, my mother’s roommate, the previous afternoon while helping Mamacita get settled into her new room after having been transferred from the ICU to the Progressive Care Unit, the step-down unit for patients who were improving. She looked to be in her 80s,  a slightly deaf woman with a very bad cough. Mamacita’s eyes grew wide as Alma introduced herself, hoarsely saying her name, which means “soul” or “spirit” in Spanish.

I understood Mamacita’s dilemma. To fart in public is always a cause of concern for her, but the idea of passing gas next to someone with such a religious name horrified her Catholic sensibilities. In her mind, it was an omen that she was roomed with someone with such a significant name and it would undoubtedly be bad luck to pass gas in such a situation. And the last thing she needed was more bad luck.

“Maybe Alma won’t wake up,” I venture tentatively. “She looked tired when I saw her today and she’s probably a sound sleeper. And she doesn’t hear very well anyway.”

For the next few minutes we discuss the possibility of waking Alma with one loud fart versus Mamacita emitting a series of tinier, secretive farts that would be less disruptive. She questions her ability in her weakened state to control her emissions. The urgency in her voice begins to rise along with her increasing discomfort.

Finally, I convince her to push the button for the nurse and quietly request to be taken to the bathroom where she can hopefully relieve herself without awakening the awe-inspiring Alma. When the nurse arrives, she hands over the phone and I explain the situation, going into great detail about her desire to not offend and even suggesting they give her some medicine to head off future gassy episodes. At the end of my spiel, the nurse, who listens quietly without interrupting once, says somewhat incredulously, “So, your Mom woke you up from a sound sleep to talk about passing gas?”

*********

Strange things happen to your relationships with loved ones when their mortality is threatened. Goofy behavior you would not tolerate in normal circumstances somehow becomes . . . well, oddly OK. Being jarred awake by my Mamacita to have a conversation about the intricacies and social conventions surrounding gas passing now seems like a worthwhile way to spend my time, something important enough for me to lose sleep over.

Compared to the conversations I had with her on the day she was admitted to the emergency room at St. Joe’s, chatting about farting was actually a pleasure. On that day, Mamacita was hallucinating, weak, trembling, unable to walk, stand or comprehend simple questions. Basically, she was a mess.

Prior to that, the last time I had been at St. Joe’s emergency room was a year and a half earlier when Dad had his final stroke, the big one that would eventually lead to his death in a local nursing home ten months later. The night of Dad’s death, I was awakened by a call from Greg, the charge nurse for the “B” wing at the nursing home. I wasn’t able to answer quickly enough before the call dropped into voice mail . . .

“Hi, this is Greg at the nursing home. I’m sorry to tell you this but your Dad isn’t having a good night and we don’t think he’ll make it to morning. He’s breathing heavily, delusional, his vitals aren’t good. We’re following the orders in his DNR protocol, doing what we can to make him comfortable. He could go anytime. You’ll need to get here soon if you want to be with him before he dies.”

I saved the message and replayed it twice before calling Greg back to tell him I was on my way and to ask him if he would lean over Dad’s bed and whisper in his ear that I would be there soon. Over the next three months I would replay this message every few days, hypnotized by the sound of Greg’s voice delivering the news I had anticipated — yet dreaded hearing — for so long.

And then one day, something strange happened. The message announcing my father’s impending death — the message I had so meticulously saved each time after listening to it — disappeared, vanished. I checked old messages, new messages, scoured the instruction manual to my cell phone and selected all the voice mail options available on my phone in a fruitless search for the missing voice mail.

I am positive I did not delete the message and angry that my phone has kept useless messages from telemarketers and people who have dialed the wrong number, but has failed to keep safe the one message I had been irrationally clinging to for three months. I contemplated calling my phone carrier for assistance but stopped short when I realized there was a manic feeling growing inside me that would not be appeased even if I did somehow retrieve that last message.

Prior to the stroke that took away my father’s ability to speak, he would frequently call me in the middle of the night just to chat. His voice would be halting and slurred, the result of previous smaller strokes. He would want to talk about whether I would be bringing pizza for lunch the next day or if I had noticed there were weeds growing in his backyard flower bed. Initially, I was annoyed at these nocturnal interruptions, begging him to please, please call me back at a decent hour, reminding him that I had to go to work the next day. He invariably would apologize, truly surprised that I would be snoozing at 2 in the morning.

As his illness progressed, however, I began to take his calls with patience and resignation, suspecting that the night hours were restless and frightening ones for him and that hearing my voice and talking about mundane topics for a few minutes somehow soothed him through the stillness and darkness. He would start these ghostly calls in the midst of some thought he was having and end them just as abruptly with a swift click, cutting himself off at some random verb or adjective.

These calls were like sound bites into the inner workings of his brain, a brain whose landscape had been ravaged and fragmented through a hard life and cancer and stroke and dementia. Always a laconic, difficult-to-read man, these new communications of his were more cryptic than ever, often snippets of phrases cobbled together in a haphazard fashion that sometimes seemed like language, sometimes not.

Eventually, Dad stopped calling me, later admitting he could no longer figure out how to use the phone and had inadvertently called several wrong numbers only to be met with angry words from the hapless folks whom he had jolted awake with his requests to talk about pizza or flower beds or his favorite movies.

Fast forward two years later, and the nighttime ghost in my phone has resurfaced, this time with a lilting Spanish accent and a sweetness and innocence of spirit that has always been part of my Mamacita’s personality. Because opposites do indeed attract, where my father was often gruff and sad in his commentary, my Mamacita is almost always friendly and warm.

After her condition stabilized, her first few nighttime calls to me from the hospital were about her confusion over how she landed there in the first place. Even though I would visit her for hours during the day and update her on what the doctors were saying about her condition, she would still call me at night, astounded and needing additional confirmation that her life-threatening illness was caused by a sodium and potassium deficiency.

And, of course, I understood her befuddlement completely. After caregiving for Dad during his declining years, Mamacita and I had worked out a health plan to do everything we could to protect her from all the big illnesses. She exercised daily, monitored her blood pressure, took medication for her osteoporosis, saw her doctor every 3 months and got all her vaccinations. Who knew that a lack of sodium and potassium could land you in the hospital and then a nursing home? While we had been vigilantly looking for signs of stroke, heart attack and cancer, could it be that Mamacita was being derailed by a food seasoning?

Since this revelation into the world of electrolyte imbalance, I am tempted to carry packets of salt with me and press them into the hands of elderly people I see mumbling to themselves on the street. I want to take out a billboard proclaiming “Got salt?” or “Do you know your potassium and sodium levels?”

A brief review of world history reminds me that wars have been fought over salt and whole civilizations have fallen in pursuit of this mineral. Too much or too little salt in your diet can lead to serious health problems and even death.

The longer I live the more I realize how little I know about anything. Despite taking Dad to dozens and dozens of doctors’ appointments and exams with specialists, I was not able to stop the last stroke that eventually killed him and now it appears I will not be able to halt Mamacita’s advancing ailments. In the end, I was left with a single haunting message announcing Dad’s last moments, a message that appeared and vanished as quickly and mysteriously as life itself.

********

Since moving into the nursing home to regain her strength and receive therapy, Mamacita has fallen and broken her right wrist. She also contracted pneumonia and was sent back to the hospital for three days of treatment.

Now back at the nursing home, she has settled into a routine of physical therapy, occupational therapy, bingo, making friends with the nurses, regaining her strength and looking forward to the day when she is discharged back home. She is more confident now and no longer calls me at night to tell me she is lonely or confused or shy about farting in front of a stranger. So, for now, the ghost in my phone is quiet, slumbering the night away.

I hope it stays like this for a long time.

I received a meditation catalog in the mail yesterday. Or, rather, a catalog advertising meditation products guaranteed to “unleash your health, wealth and power.” Feeling a little unhealthy, unwealthy and powerless lately, I thought I’d give it a gander.

The woman on the cover of the 16-page, full-color catalog looked blissful. She was a young blonde with creamy complexion, curly eyelashes, sensuous lips and a look of serenity on her face. The only thing that marred her gorgeousness was the clunky black headset strapped to her head and to which she clutched with one hand.

These were no ordinary headphones, according to the catalog. They were an integral part of a “meditation machine” that would zap my stress and boost my brainpower. By simply listening to the 5 ultra-meditation programs installed on the headphones my fears and anxieties would disappear. I would feel renewed vitality and when plugged into the machine I would hear the soothing sounds of Tibetan bells and underground streams. These images seduced me into paging through the catalog to review its glossy interior.

And what an interior it was! Inside was a photo of a happy, middle-aged fellow describing his experiences with these meditation headphones. While listening to the programs, he said his “spine tingled with the force of 220 volts,” he started having a long conversation with a voice in his head and eventually experienced angels flying around inside his skull.

Good Lord! The trippiness of angels potentially banging around inside my head perplexed and kind of frightened me. I don’t like it when visitors show up unannounced at my house, so how would I deal with them in my brain? I’m not the neatest of housekeepers, either physically or brain-wise, so I’m not happy at the thought of angels being exposed to my messy tangle of neurons, synapses and half-baked dendrites. I was beginning to realize this new high tech meditation wasn’t at all like the “AH” and “OHM” chanting I was used to.

As I looked over the descriptions of the meditation programs included with these headphones, I was captivated by program number four, entitled The Cetacean Mind Link. This meditation allows you to have the experience of linking your consciousness with that of a whale or dolphin. Sort of like swimming with them without getting wet.

This sounds vaguely like Mr. Spock’s Vulcan mind meld from Star Trek. I had no idea technology had advanced to the point that we can now lapse into deep meditation and communicate with whales and dolphins! I am skeptical about the advisability of this, however. Given how horribly we human beings have mucked up our oceans with pollution and overfishing, I’m not so sure I want to have a mind link with any of our ocean dwelling neighbors. With my luck, I’d meld with a cetacean from the BP oil spill region. Boy, wouldn’t I get an earful (er, mindful?). Between the angels already rattling around in there and these newly acquired whales and dolphins, it seems like it’s getting a bit crowded in my cranium.

However, it’s the fifth and final program in this evolving consciousness mind series that’s the real humdinger. It’s called (I kid you not) the “Near Death Experience.” By applying harmonics and sound frequencies to specific brain areas, this audio program purports to “give you the ultimate transcendental experience by taking your consciousness through the aural landscape of the 5 stages of near death simulation – and bring you back recharged, renewed and enlivened.”

Holy guacamole! Could this be true? Could I really plug into my headset and meditate my way to a near death experience? Less than two months ago I was holding my father’s hand in a local nursing home as he was having his very REAL death experience (nothing “near” about it). Given the physical and emotional discomfort he was undergoing, I can’t fathom why anyone would pay $99 plus shipping and handling to have a simulated one.

Still, I have read many stories of people who have had NDEs and claimed that the experience was comforting, enlightening and life affirming. The catalog appears to support these claims and certainly doesn’t seem to be saying that the pain of death would be included as part of this mind-blowing package. I mean, really, how many takers would they get if this were the case? No amount of fancy PR and marketing could get me to take that bait!

My curiosity got me to wondering about this whole scenario. Say I were to undergo one of these near death meditations. Would I float out of my body and encounter the white light everyone talks about? Would I be drawn to it like a moth to a flame? Could I sort of poke at it a bit, maybe slip my metaphysical hand through to the other side just long enough to get Dad’s attention? (I wouldn’t want my whole metaphysical body to go through. That would be creepy. Just enough of me so Dad would know it was me. My metaphysical hand should suffice.). Could I give him a high five, thumbs up and a quick pat on the back? Sort of like: “Hey Dad, it’s me, I’m OK, hope you’re OK. See you later, alligator!” And then zip lickety-split back into my non-ethereal, real-life body that I’m still quite attached to and still like quite a bit?

Hmmm, maybe? Maybe not.

As I peruse the rest of this catalog – which, by the way includes products for remote viewing, beating the stock market with 5 minutes of work each day and a $279 pendant that protects the wearer from the stresses of EMF radiation – I notice something shift inside me. The ground underneath my feet, which has been a bit spongy lately, seems to be a bit more solid. I can take a deep breath and don’t feel the need to hold it indefinitely. Something silly, strange and weird has distracted me for a few minutes and given me a brief respite. And then the thought flits across my mind: Maybe grief doesn’t last forever?

I love good old-fashioned American hucksterism and this meditation catalog certainly falls into the keeper category. It’s reassuring to know that with American ingenuity and some imaginative ad copy you can produce, buy and sell just about anything. Vulcan mind-meld with whales and dolphins? Check! Angels swirling around in your skull? Check! The 5 stages of the near death experience? Check, check, check!!!

I feel better already.

“Bobby, what are you thinking about?”

“White-cat-meow.” He is sitting in his favorite reclining chair, staring at his fingers intently. He says the words quickly, running them together as if they were all one word. I’m pleasantly surprised at how promptly he responds to my question. This is unusual.

“White cat meow?” I repeat, trying to draw him out. I speak loudly and enunciate each word carefully. If I’m lucky, and if Bobby is in the mood and able, he will repeat the phrase back to me.

A few moments pass, then Bobby, still gazing at his fingers, says in a flat voice lacking inflection: “White-cat-meow.”

My heart jumps. Success! Bobby wants to talk today! I’ve gotten the ball rolling on this conversation. Now it’s my job to keep it going.

“White cat M-E-O-W!” I take a different tack, this time emphasizing the cat sound. I stretch out the word, making it sound more like a lion’s roar than a cat’s mewing.

Bobby’s eyes narrow. He has contorted the fingers on his right hand so they twist at strange angles, with each finger stacking on top of the one next to it. It looks painful, but he doesn’t flinch. He uses his left hand to make careful adjustments to the fingers on his right hand. He is taking in my response. I hold my breath. Ten seconds pass. Then fifteen. Twenty.

“White cat MEOW!” He suddenly drops both hands, straightens his fingers, and looks me squarely in the eye.

I’m elated. Our conversation is officially more interesting than his fingers! We trade a half dozen more “white cat meows.” He seems to enjoy the back and forth of our “discussion” as much as I do.

I then decide it’s time to push the envelope a bit. I’m curious to see how much more language I can coax out of him before he shuts down again.

“Bobby, what else are you thinking about?”

He seems taken aback. He had expected another “white-cat-meow” and instead I threw him a curve ball and broke the repetitive pattern. He moves his lips but no sounds come out. He furrows his brow and shakes his head a few times. He seems about to give up when out of nowhere he says:

“Chad pickup truck.”

He has a startled look on his face. Kind of like, “Wow, did I really say that?! Did I really have a thought in my mind that I was able to form into words that came out in such a way that someone else actually understood me?” Slowly, his eyes widen and he begins to smile.

I get Bobby and I smile, too. This has the makings of a good conversation. I immediately say “Chad pickup truck” to begin the next volley in our game of language and connection making. The trick here will be to continue the exchange at a pace and rhythm that will keep him engaged and perhaps lead him to disclose other bits of language that provide insight into his thoughts and feelings.

Searching for meaning in Bobby’s phrases

As he delivers the next round of “Chad pickup truck,” I begin to realize why this phrase might be important to him. Chad was one of Bobby’s behavioral aides until he moved out of the area last year. He worked with Bobby ten to twelve hours per week, providing much-needed respite for Mom, who is Bobby’s primary caregiver. He drove a white pickup truck and took Bobby for outings every weekend. Chad was a recent college graduate who majored in psychology and had an interest in learning about autism. He was protective and kind to Bobby.

Of course, rather than repeating this phrase endlessly, what I really want to say to Bobby is, “Yes, Chad drives a pickup truck and he used to take you to lots of interesting places in town. The two of you had a great time together. What was your favorite place to go with Chad? Did you like going to the mall with him? What about the marsh? Did you enjoy walking around the marsh with him on sunny days? What kind of wildlife did you see? Egrets, falcons, geese? Why are you mentioning Chad right now? Do you miss him, do you wish he were here to take you someplace?”

As always, I have many pent-up questions I would like to ask my profoundly autistic brother. Still, I know if I pursue even a few of my questions I will break this spell of language we are under and Bobby will be overwhelmed and unable to respond. He will shut down and go back to the comfort of his own finger stacking, finger contorting world. From experience I know to proceed gently and patiently, not to rush him, to look for the subtle signs that he is ready to take the next leap in our exchange.

It’s not long before I begin to see that opportunity. There is an eagerness in Bobby’s eyes. He has maintained eye contact with me for a few minutes, something many autistic people find difficult to do. He is now sitting on the edge of his chair, leaning forward. If you were to take a snapshot of the two of us at this moment in time, you would assume you were looking at two people engaged in an animated two-way conversation, not two people repeating the same disjointed phrase.

I feel as if Bobby is daring me to go ahead and break the rhythm, to take our conversation to the next level. I feel adventurous.

I say slowly and deliberately, “Bobby, is there anything else you’re thinking about?”

He takes the bait immediately.

“Sammy Davis, Jr.!”

I repeat the name back to Bobby, using his same tone and inflection. This is one of Bobby’s long-time favorite names. Since we were kids, he has invoked the name of Sammy Davis, Jr., at seemingly random times out of context to anything. Years might pass between him mentioning Sammy, but when he does it seems to be a name that has dug a deep groove in his brain, giving him tremendous pleasure in repeating. He once penned his version of an homage to Sammy, writing a full page in his notebook of the popular entertainer’s name in block letters with exclamation points after each entry. He wrote nothing else on the page, no other words or phrases connecting the name to some event in his life, to some TV show or movie or musical performance he might have seen starring Sammy. Just a full page of Sammy Davis, Jr. in bright blue ink.

While I do not know why Bobby obsesses over certain names and phrases, I do know that “echolalia” and “palilalia” are behavioral characteristics common to some people with autism and Tourette Syndrome. According to the National Tourette Syndrome Association’s Glossary of Terms, echolalia is the “repetition of words or phrases said by others,” while palilalia is “repeatedly saying one’s own words or phrases.” For Bobby, this repetition of phrases also includes written phrases (such as repeatedly writing “Sammy Davis, Jr.” and other favorite words or sentence fragments).

As a child growing up with an autistic brother, I did not know the definitions of echolalia and palilalia. All I knew was that it seemed like a game Bobby was trying to play with me and I was happy enough to go along for the ride if it meant I could achieve some sort of communication with him. Since there would be days and sometimes weeks when Bobby would not say anything, a flow of language – even what seemed on the surface like repetitive gibberish phrases – was like a gift from the Gods.

So, I conceal my disappointment when Bobby insists on repeating “Sammy Davis, Jr.” Traditionally, this phrase is a conversation stopper for him. We volley the name back and forth a few times before he breaks out in laughter. He closes his eyes, leans back and chuckles merrily at a joke or memory that he is unable to share with me.

The fragile connection is broken. He gets up abruptly and walks away, still laughing. Later that afternoon, I hear him whispering “Sammy Davis, Jr., Sammy Davis, Jr., Sammy Davis, Jr.” It will be his new mantra for the next few days, a secret password that he shares with his bewildered family.

Progress in small steps

Driving home that day, I go over in my mind the phrase that started it all: “White cat meow.” Years ago my boyfriend, Marc, and I had a white cat with gorgeous blue eyes. His name was Vanilla and one time Bobby visited me and spent time petting him. Was this the cat he was referring to? Was he trying to ask me where Vanilla was? Should I have told him that Vanilla had cancer and went to kitty heaven many years ago? Or did he mean some other white cat he saw in the neighborhood? Or maybe a cat he saw on TV or in an ad in a magazine? Was he even really thinking about cats when he said it? Or was this the only phrase his impaired brain would allow him to say?

I have many more questions than answers when trying to decipher Bobby’s language. I’ve spent many an hour in contemplation of autism and the way it affects communication. There are days when I get frustrated and feel that I am deluding myself by reading too much into Bobby’s nonsense phrases. Then, later on, I feel guilty for deeming any of his attempts at language as “nonsense.”

What is truly impressive is that after 52 years Bobby has not given up and is still trying to communicate with us. In fact, with Mom’s coaching and the help of his behavioral aides, he has made great strides in learning simple phrases. Nouns seem to be easier for him to say (as opposed to verbs, which he has difficulty using).  He can say the nouns for his favorite foods, which these days are “cashews,” and “egg rolls,” and the makes and models of his favorite cars.  He can ask for a break from activities by saying, “Break, please.” He consistently uses one all-purpose question — “You have something for me?” — to request food or attention.

Having an autistic sibling has meant I’ve had to redefine for myself what I consider language. The intricacies of language are complex; this is something I’ve only just begun to delve into as I study what constitutes language, how we learn language as children, and how we establish the rules that govern our communication. Language certainly also has a social and cultural context. Language is about giving and receiving, the connections we make with one another by sharing a story, the relationships we forge and strengthen by expressing our ideas and feelings.

If one of language’s main purposes is about giving and receiving, then I guess I could say that Bobby gave me “white cat meow.” While I’m not exactly sure how to interpret “white cat meow,” I do consider it a gift and welcome it into my relationship with my brother along with “Chad pickup truck” , “Sammy Davis, Jr.” and a whole slew of other mysterious phrases he has shared with us over the decades.

I drive home content, happy that today we enjoyed a few minutes of connection and wondering what words, if any, Bobby will share with us tomorrow.

Bobby and Elizabeth posing in front of a vintage Ford

Bobby and me at a 4th of July car show

Last July 4th was my brother’s 52nd birthday. Born on the day we celebrate our country’s freedom, Bobby did what many of us do each year on Independence Day. He ventured out into the community to join the locals in the area’s annual patriotic festival.

Together, we strolled down the streets of the Old Town shopping district, which had been cordoned off to make room for the throngs of pedestrians.  Vendors set up booths selling artwork, jewelry, and homemade crafts. The pungent aroma of barbecue filled the air. Folks greeted one another warmly, some wearing red, white and blue shirts; some waved miniature flags. Children darted in and out of the crowd, many zooming over to the kid zone where games, prizes and face painting awaited them.

As we meandered through the carnival, I gently navigated Bobby away from the area where the music stages were set up. I knew the lively booming of rock and jazz, intermingled with a couple hundred people milling about and carrying on conversations, might be too much for him.

Instead, we lined up at a booth where they were giving away free snow cones. Curious as to his reaction, I handed him a cherry-flavored cone. He looked at it suspiciously, then took a few tentative bites. Displeased with the intense coldness and sweetness of the syrupy concoction, he handed it back to me and walked away in silence. I sighed, thinking, “I should have known better!”

All the bells and whistles

I had an opportunity to redeem myself when I saw a display of vintage autos parked along E Street. Bobby needed no coaxing as I led him to an especially shiny, chrome-laden model. He’s always had a fondness – almost obsession—for cars from the 1940s and 50s.

His gaze fixed on the bright red 1948 Plymouth 4-door sedan with white wall tires and luxurious leather interior. He cocked his head and pointed at the beauty, as if to say, “Now this is how to make an American car!”

I quickly snapped photos for his memory album. I then waited while he walked in circles around the cars on display, methodically reviewing the details of each. He peered inside each vehicle, bending his tall, lanky body awkwardly.

Soon, I began to notice signs of distraction. Every few minutes, he would bend over and adjust the Velcro straps on his shoes. Then, instead of every few minutes, it became every few steps, until his focus shifted entirely from the cars to making painstaking adjustments to his shoes.

I glanced at my watch. We had been out for 45 minutes. Time to find a bench away from the crowds for a bit of a break before heading home. I would take Bobby home to Mom and Dad, where we had planned a low-key birthday celebration for him. There would be special food, well wishes, and small presents. Perhaps we would watch a DVD afterwards. I wondered if the clamor of the night’s fireworks would make him anxious as it had in previous years, or if he would be able to sleep through the ruckus.

You see, Bobby is low-functioning autistic and Independence Day, along with independence in general, has a different meaning for him.

A glimpse into Bobby’s world

In the world of an autistic person, too much stimulation – such as fireworks, crowds, loud music, strong aromas, a sudden change in surroundings – can be a bad thing. When the stimulation becomes too much for them, they frequently shield themselves by withdrawing socially. Even the desire to participate in a pleasant activity – such as admiring antique cars, in Bobby’s case – is overshadowed by the need to protect oneself from a world filled with sensory overload.

While we have probably all experienced a sense of dizziness and brain weariness at our increasingly fast-paced lifestyles, Bobby’s threshold for even the most common of human activities is extraordinarily low. Hand-in-hand with his sensitivity to external stimuli is his need to participate in repetitive behavior, such as the compulsive adjusting of the Velcro straps on his shoes. This behavior seems to calm him, shifting his attention away from whatever is bombarding his senses to an activity that he can control and which has predictable results.

Many people have asked me for a more specific definition of Bobby’s autism. Since I’ve been his sister my entire life, I should by now be able to rattle off some textbook description of his condition. However, I’ve never found it that easy. I find it hard to categorize another human being, to systematically define who they are by explaining the symptoms and characteristics common to their ailment. This is especially hard to do when talking about someone you love.

I suppose I could list all the things he cannot do, emphasizing his limited verbal ability and social skills, ritualistic behaviors, impulsive temper, occasional tantrums, tendency toward self-injury, and need for round-the-clock care and protective supervision. However, since my glasses are notoriously rose colored, I prefer to list the things he can do.

• Bobby is gifted at throwing and catching a Nerf ball. He will play catch with his caregivers and family members for hours on end.

• He can make himself a simple sandwich (grape jelly is his favorite) and will eat it with great gusto.

• With supervision and coaxing, he can give himself a shower, brush his teeth, comb his hair, shave, and dress himself. Although it took him decades to learn most of these skills, he perseveres and gets the job done each day.

• He loves numbers. No, he is not a savant and cannot do “Rain Man”-like calculations in his head. But he can do addition and subtraction. He delights in staring at the digital readouts on watches, the microwave clock, and his pedometer.

• He has very good handwriting. He signs his name slowly, concentrating on applying the proper flourish to each letter.

• He enjoys cats and sometimes will giggle delightedly while petting them.

• He likes comic books. Superman and Spiderman are his favorites.He is able to learn new things and overcome lifelong fears. His caregiver recently taught him how to vacuum his room, a big accomplishment for someone who used to scream in terror and pound his ears with his fists at the mere sound of the vacuum.

• He is capable of trusting new people in his life as evidenced by his acceptance of the behavioral respite workers that help my parents with his care. His trusting nature is remarkable considering the regular beatings he used to receive in junior high from the school bullies who taunted and tortured him for being different.

Bobby inspects a real beauty

Perhaps you think the above list is just the rationalizing of a sister trying to find virtue in her brother’s incurable disability, trying to put a positive spin on a condition that confounds doctors and strikes terror in the hearts of parents. Well, maybe you’re right.

After reading the essays and blogs written by other siblings of autistic individuals, I’ve come to realize how common and natural this way of thinking is, this desire to defend and explain our brothers and sisters in human, non-clinical terms. For me, some of this desire stems from the question that often haunts me when I consider Bobby’s plight: “Why him and not me?”

I especially have these thoughts around his birthday as I ponder the irony of his birth on a day of freedom and independence, words generally not associated with autism.

I honestly believe, though, that it is not a rationalization to say that of all the teachers I’ve had in my life, Bobby has probably been the greatest. It takes practice and determination (and yes, oftentimes a thick skin) to care for someone who will go weeks without saying your name, never inquires about your health or interests, and is oftentimes locked in his own mind. Bobby has taught me patience, humility, compassion, forgiveness and tolerance. The bottom line is if you want to care for someone who is profoundly disabled and you want to do it right, then you must learn these traits and you must learn them well. Otherwise, you will be of no use to the one you are caring for.

Even worse, you will have lost out on experiencing what my Mom calls “the miracle days.” These are the days when the clouds temporarily lift from Bobby’s mind and he says a complete sentence that makes sense, cracks a smile at a corny joke I tell him, or allows me to hold his hand while I guide him down a bustling, raucous street on the Fourth day of July – Independence Day – the day of his birth.

This is what I know about Dad . . .

Kendall Blessing was born on August 12, 1929 in Chicago, Illinois and died on March 24, 2011 in Eureka, CA. He was the son of Gregory and Oma Blessing. He had one brother, William, and two sisters, Joyce and Barbara. He is survived by his wife of 53 years, Connie, and his three children, Robert, David and Elizabeth.

After high school he moved west to California to escape the frigid Illinois winters. He went to college at San Jose State and dropped out to help care for his brother, William, who had contracted polio.

In the mid 1950s, he started selling insurance. In 1957, while traveling in Mexico, he met and courted his future wife, Connie, a pretty waitress he met in a restaurant. They soon married, moved to San Diego and had three children.

He worked various jobs, most notably as a records clerk for the San Diego County Sheriff’s Department. He worked the night shift, taking mug shots, fingerprinting prisoners and running warrants checks on the newly arrested folks brought in by the deputies. His contact with this darker side of humanity fueled his pessimism on the state of the human race. He often came home worn out and sad. His hair was mostly grey by the time he was 40.

The reason he worked the night shift was so that he could be available during the day to help Mom care for their disabled son, Bobby, who was profoundly autistic.

Not much was known back then about autism. In the 1950s and 60s, some doctors believed that autism was the fault of poor parenting. While these theories have been disproved, the pain and stigma of being unfairly labeled weighed heavily on Dad. I don’t think he ever got over it.

Dad often said his greatest achievement was that he never gave up on caring for his son. Despite pressures from psychiatrists and school officials, he adamantly refused to place Bobby in an institution or group home. Because of my parents’ resolve, Bobby has always been lovingly cared for at home by his family.

In 2007, the entire family moved from San Diego to Eureka, California. We were seeking a slower pace of life, cooler weather and big trees. Sadly, for Dad and his family, the ensuing years were filled with doctors’ appointments, cancer, strokes and then a 10-month stay in a local nursing home, where he passed away.

Silence and reconciliation

These are the main facts of my father’s life. The truth is I didn’t know him that well. He was a no-nonsense, laconic man. He struggled to express his emotions. Talking, in his opinion, was way overrated. Maybe it was his Depression-era, WWII upbringing that made him so stoic and reticent. When he did say something it was frequently memorable, sometimes harsh and sarcastic, and oftentimes darkly funny.

While Dad was “the glass is half empty” sort of guy, I’ve always been “the glass is half full” sort of gal. This divergence in world views led to our share of arguments – some of them pretty heated – but, I’m happy to say, all of them long resolved before Dad passed away.

Our reconciliation was surprisingly simple. When Dad’s series of strokes began to take away his ability to talk, we became closely bonded in his silence. Oddly enough, whether he shared my viewpoints or not, I found no longer really mattered.

And in his illness, he discovered the reticent man’s perfect refuge, a new way of communicating with his family, a way he could finally share his feelings and thoughts without saying a word: he discovered the movies. Or, DVDs, to be more accurate.

Surprising lessons through movies

Humphrey Bogart, Bette Davis, Jimmy Stewart, Henry Fonda – he found all the great actors and classics at the library, online or at the video store. His collection grew and he began to branch out to more recent films. He would urge me to watch his favorites, pushing a prized DVD into my hand with the encouragement: “Watch this! You’ll learn something!”

What I think he meant was that I would learn something about him, something he yearned to share with me. His movie selections seemed to reflect some aspect of his personality. With each movie, my enigmatic father became slightly less of an enigma.

Here were his favorites:

Cool Hand Luke: Because you can never have too many hardboiled eggs. Paul Newman plays the loner who refuses to conform to prison authority. Dad appreciated the irony of the line: “What we’ve got here is failure to communicate.”

Young Frankenstein: This movie showed us Dad laughed most and hardest at wonderfully silly puns and sight gags. Marty Feldman’s moveable hump and Frau Blucher’s affect on horses brought tears to his eyes.

Cast Away: Dad liked the survivalist theme in this movie. Alone and bereft of human contact, what would you do?

The DaVinci Code: This movie conformed to Dad’s view of the world. Who do you trust in life: the church, a good friend, your mentor, your family? Plus, it was a good thriller, which he always enjoyed.

Forrest Gump: Another Tom Hanks’ movie! Dad idolized Tom Hanks. Tom Hanks could do no wrong. Dad would watch Tom Hanks in an underwear commercial. When Tom Hanks goes to the great theater in the sky, Dad will be first in line to shake his hand.

Amadeus: This had one of Dad’s favorite lines: “Too many notes!” This comment was uttered by the Emperor to Mozart when describing Mozart’s work. “Too many notes!” became Dad’s signature line to end any conversation he found annoying. He used this a lot with me.

Dad and me on his 81st birthday

I learned many lessons in caring for Dad in his final years. I learned to accept our relationship with all its quirks and to accept his desire for solitude. I learned there are many different ways of communicating and silence is a surprisingly valid one. I don’t know if I would have learned these lessons as vividly without our relationship. Perhaps in this journey of life I didn’t get the father I wanted, but the father I needed.

So, Dad, in 30 or 40 years (maybe more?), I’ll see you on the flip side where the movies are always playing and the endings are more satisfying than they are here on Earth. The popcorn’s always fresh, the sound system is fabulous and there’s never a tall guy with a big head sitting directly in front of you. Until then, save a seat for me, Dad.

I love you THIS much (arms outstretched as far as I can),

Elizabeth