Stories From the Heart: No Greater Love

Jesus said, “No one has greater love than this, to lay down one’s life for one’s friends.”  While we usually think of something dramatic when we hear this saying, like dying in battle to save a comrade, the willingness to quietly subordinate our own life to benefit another may count for just as much.

I was reminded of this when I received a call from the sister of one of our adult campers. Karri, who has Down syndrome, and is in her early 30s, came to camp for the first time last summer.  She arrived accompanied by sisters, brothers, in-laws, nieces, nephews, and various unidentified folk, all anxious to inspect the premises and meet the people who would care for her in the coming week.  The family asked about visits and phone calls during camp, and I assured them they were welcome any time, (the only caveat being that if they stayed too long they’d probably be given a job to do.)

True to form, they called and visited throughout the week.  Karri, shy and hesitant at first, got into camp and had a good time, even performing in the Thursday Night Talent Show.  She declared herself ready to come back the next time we opened the doors.

A few months after camp, Karri’s sister called.  Their mother was in the last stages of Cancer, and the family was at a loss as to how to prepare Karrie for her mom’s death.  The sister indicated that theirs was not a church-going family.  Even so, I suggested it would not be dishonest to tell Karri that Mom was going to live with God in heaven soon.

Recently the sister called again.  Mom had died the week before.  When the family went to the funeral home for the viewing, everyone was concerned as to how Karri would react.  Before going into the parlor where the casket was, they spoke with Karri and told her that if she didn’t want to go in, that was fine.  But Karrie insisted, “No! I want to say goodbye to Mom.”

Entering the room, Karri broke away and hurried to the side of the coffin, leaning over and covering her mother’s face with kisses.  “Goodbye, Mom,” she said.  “You rest now.”  And then she began to pray.

As the family watched, Karri prayed over her mother’s body for several minutes.  At the end, she repeated, “You rest now, Mom.”  Then she took the small cross from around her neck and traced the sign of the cross over her mother’s face.  Following that, she crossed herself and said something the family couldn’t hear.

On the way home, her amazed father said, “Thank you, Karri, for your prayers for Mother.”  “Where did she learn that?” wondered her sister.  Thinking further, she thought maybe from TV programs and videos.

“God’s word never returns void,” says the prophet Isaiah.  It appears that the Word found a home in a tender heart, and although Karri will never do theology, she can pray for those she loves and entrust them to God’s care.

Like many siblings of people with mental disabilities, Karri’s brothers and sisters have embarked on a journey to make a good life for their sister after their parents are gone.  They have a special inheritance, one requiring much patience and dedication, as they strive to challenge as well as protect Karri.

And in doing so, they will continue to learn that caring for a person with mental disabilities is not a one-way street.  Karri has her own wonderful gifts to bring to the banquet of life.  She has a contribution to make, her own special song to sing, including words to help pray her mom into the next life.

It is a special joy for us to encounter a large family acting on behalf of their weakest member. It is something we are privileged to see a lot of here at the Ranch.  It inspires us.  And it renews our determination to build a place where the Karri’s of the world can find the place that’s just right for them.

By Judy Horton

Judy lives with her husband Jerry and their daughter Kelly, who has Down Syndrome, at Down Home Ranch, a working Texas farm and ranch for people with special needs and those who live and work with them.

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

Stories From the Heart: A Young Woman’s Search for Meaning

It was an ordinary day, just like any other in the middle of a season draped by the wintertime fog of Sacramento. This day though held something different, something promising. Like the spring that was soon to come, it was a day that offered one young woman hope.

Some would say she was reaching too high given whom she was and what she set out to accomplish, but she only had the ordinary hopes and dreams of any young woman. There was something though that held her back.  She had a problem she’d never quite got a handle on; she was legally blind and no one, least of all her, knew how she’d make it in a world where no one quite understood.

She came from a decent, middle class family, but one where no one talked much, especially about the things that mattered most. She’d given everything she could to make it in the world up to this point and, somehow all she had to show for it was a monthly S.S.I. check. But this one job prospect just might hold the key to the thing that mattered most, a station in life with meaning.

She was determined and yet a bit reticent; she was born premature, and she was aware that she had many other challenges besides her lack of sight. But one thing she knew: she wanted to carve out a piece of life that she could call her own.

Now she stood at the door to the library, and took a deep breath. She had prepared for this job prospect and prepared well. But she wasn’t sure if she’d make a successful impression. She had not yet been educated in the use of a cane to alert others to her visual disability. Without the explanation that a cane offered, her lack of sight made others uncomfortable with her awkward stare. It was one of the hardest things she’d ever do, to confidently proceed in an environment where nothing was quite clear, yet her future depended on it.

She held her head high as she entered through the heavy glass door. She couldn’t help being a little taken back by the three hour interview.  No one there had any idea of how a legally blind person operated, especially on the job.

She waited the longest two weeks without a whisper of an offer for the position. But she was determined, and she had hope that was based in the power of a particular organization that was behind her called the National Federation of the Blind of California.  They were dedicated individuals from the NFBC lobbying at the legislature for positions at this library (that served the blind) to be opened up specifically to blind individuals.

She contacted the NFBC and once again conveyed her qualifications and desire to be considered as a serious candidate for this coveted position. Within the week she got the news. Her exclamations of joy could be heard from the rooftops of this sleepy government town. Like the spring that was now blossoming, this opportunity held for her the very real promise of renewal and hope.

The seasons turned, and sooner than she’d even thought possible, twenty years have passed. Being a reader assistant at the Braille and Talking Book library has given her a life full of purpose and meaning.  It is her hope that she has served her community well. She sincerely thanks the NFBC for making such a remarkable opportunity possible for her and so many others.

Through eyes that reflect on what was so dear on that far distant day, she’s reminded of the strides we have all made. Though the road to empowerment and employment for a blind person is not an easy one, it is lit though by a beacon illuminated by our hopes and dreams.

Blindness need never be considered a barrier to employment. We can all make a difference. All that is needed is a never failing sense of hope and determination. Working together, with the help of organizations such as the NFB, all things are possible. Success is there for the taking.

Author Unknown

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

Stories From the Heart: Comedy, Tragedy and a Troublesome Tooth

My brother, Peter, has a developmental disability which has never been diagnosed despite extensive evaluation in the 1970s, and more testing a few years ago. We have never had a tidy label to describe him.

I have always loved the fact that, by virtue of not easily fitting into any clinical category, Peter seems to defy science as swiftly as many of the sci-fi heroes he loves. His special needs have presented challenges along the way.  Growing up, Peter was often ostracized and teased by other children.  Our parents fought their own battles to obtain the educational support he required – a plight intensified by the fact that without a diagnosis, Peter has never automatically qualified for services that address his unique needs.

When Peter finished school, the struggle shifted to finding a structured environment: ideally a job which enabled him to increase his independence, productivity and involvement in the community.  Today, as all of us age and contemplate the future, important questions loom regarding where Peter will live and how he will get the daily support provided by our parents after they are gone.

I once asked Peter what he considered to be the biggest tragedy of his life.  I was in college, studying Italian Renaissance literature, swept away by the rich language and dramatic tales of the human struggle.

Peter, ever the realist, replied without hesitation,”The tooth.”
“What?”  I asked.  “What tooth?”
“Emily!” he said, incredulous and wide-eyed. “Don’t you remember?  I broke my front tooth six times.  Where have you been?”

Slowly, fragments of memory came together.  Yes, Peter had spent an awful lot of time in the dentist’s office as we were growing up.  I studied his mouth and before long I could almost see the word “FRAGILE” stamped across it in big, red letters.  How could I have forgotten The Tooth Tragedy?

Tooth Incident #1 occurred in 1979, when Peter was eight years old.  He was playing basketball with a neighbor when both boys jumped up to grab a rebound.  Instead, Peter got a sharp elbow to the mouth.  One tooth, the front left, had broken. Our parents immediately took Peter to see Dr. Salusti, our family dentist, who essentially pasted the tooth back together.  My brother, an active child who loved sports, stopped playing basketball for a couple of days thereafter, but only because Mom made him.

The second Tooth Incident occurred when Peter was 14.  For years we had spent summer weekends camping on New Hampshire’s largest and, to my mind, most beautiful lake, Winnipesaukee.  That summer Dad decided that, with our last name (which means “seaman” in Italian), owning a boat was a matter of destiny.

Peter, like me, was always happiest on or in the water.  In the back of the speeding motorboat we sat side by side, our excited shouts barely audible above the engine, our giggles carried away by the same wind that pulled us down into our seats. Mom had an ancient pair of heavy binoculars.  Using them was similar, I imagine, to reading an encyclopedia while lying flat on your back on the beach: your arms simply could not take it for very long.

One day, we trolled the boat leisurely, taking turns scanning the lake through Mom’s binoculars.  Unfortunately, Peter was enjoying a view of our beloved Rattlesnake Island when Dad decided to refresh our scenery by turning the boat.

When Dad pushed the throttle, the boat’s nose surged into the air as her motor dug into the water.  As we lurched forward, Peter lost his balance and fell back into his seat.  On his way down, the heavy metal barrels of Mom’s binoculars smacked into his mouth.  The weekend getaway ended with an emergency trip to Dr. Salusti’s office.

Two weeks later, Peter bit heartily into a pork chop, constituting Tooth Incident #3.

That November, the fourth Tooth Incident occurred at school.  In the end, we didn’t know if Peter had been unintentionally hit by a classmate who was fighting with another student, or if the kid had purposely popped him one.  We did, however, know how to proceed.  Thanks to my brother, Dr. Salusti was having a lucrative year.

When Peter showed up in Salusti’s office a few weeks later after biting into a donut (yes, a donut) and rupturing the ill-fated tooth for the fifth time, our collective good humor was running low.

They say the good thing about enduring bad times is that usually they can only get better.  Lord knows that Peter and his tooth were ready for better days.  Luckily, many followed, thanks largely to Special Olympics.  Peter loved playing sports with teammates who became his best friends.  Years of joyful, virtually injury-free athletic achievement passed.

And then the softball season of 1994 arrived, along with the Final Act of the Tooth Tragedy.

Peter stands 6’3″ tall and weighs more than 200 lbs.  Despite his intimidating mass, one look into his big hazel eyes renders his unmistakably gentle nature.  He loved to play centerfield.  However, the fear factor periodically overruled his skill, especially when objects were headed his way with considerable velocity.  You see, when it comes to personal safety, my physically imposing brother is basically a wimp.

One day a ball was hit hard in Peter’s direction.  I had seen him attempt to catch fly balls before, following the airborne ball with dancing eyes and legs as he stuck out his glove.  As the ball approached, he would simply squeeze shut his eyes and clamp together the folds of the glove, praying that the white leather orb was inside.  Often, he was lucky.

On this day, my brother’s prayers went unheard.  Later, Peter said that the sun had blinded him.  I pictured his upturned face, closed eyes and open mouth welcoming the warm sunshine and fresh air, but making a poor substitute for his outstretched glove.  Peter’s seven innings were cut short for a trip to Salusti’s.

By then Dr. Salusti’s son, who we affectionately still call “Junior,” had joined the practice.  When he read Peter’s file, the young dentist decided that enough was enough and ordered my brother to avoid all activities that might injure the tooth (a broad category, given Peter’s dental history) until he could put a permanent cap over it.  Peter eagerly obliged, forsaking centerfield, pork chops and even donuts.  The day he came home with his capped tooth, my brother smiled as if he had been granted lifelong immunity from every disease on the planet.

Today, Peter and I laugh about The Tooth Tragedy, and we talk about other challenges that we may confront in the future.  We know that the answer will not always be as simple as a visit to the dentist.  We understand that there aren’t permanent caps for everything that may break in our lives.

But we recognize that we have been blessed with optimism and a sense of humor, and we know that we have each other.  While we cannot predict the comedy and tragedy that will come our way, there is a certain comfort in knowing that we will experience all of it together.

Emily Marino holds a M.F.A. in Nonfiction Writing from Columbia University.  She is a member of the National Sibling Leadership Network, devoted to providing the siblings of individuals with developmental disabilities information and support to advocate for their brothers and sisters.  Currently, Emily is writing a book about the special bond between individuals with developmental disabilities and their siblings.

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

Stories From the Heart: College Bound

All I can remember is how much my son always wanted to go to college.

We told Austin he could do anything.  He might have to work much harder than others, but he could do anything. Little did we know just how hard and how much work our son would have to go through.

Austin was Diagnosed with E-Coil Bacterial Meningitis at 7 days old, which is a infection surrounding the brain and spinal cord, he was in the hospital for a month.  At his 8 week check up Austin was diagnosed with having Hydrocephalus, (water on the brain) the infection had scared his brain so bad the water could not flow correctly, so a neurosurgeon had to place a shunt. This shunt will be with him the rest of his life and there are many complications with shunts.

We told Austin from a very young age about his shunt and his condition. Austin knew he might have to have more operations. It is just the way it is when you have extra pluming; sometimes it needs to be fixed. After Austin’s original brain surgery, at 2 1/2 months old, he was very weak, his right side did not work well, and his neurologist said he had mild Cerebral Palsy.

At 4 months old Austin started in an early intervention and therapy program. He could not roll over, he could barely hold his head up, but he tried so very hard. We noticed he looked like and old man trying to listen to us, his left ear pointed up to us, so we had his hearing checked, who confirmed he was deaf in his right ear.

Austin’s speech was hard to understand, and at times he would look up and know what he was saying, but to us it was indistinguishable garbled words. When he spoke it came slow but as he got older it got much better. We could see his determination in his eyes.

Austin was place from special education into regular school at kindergarten, he was very smart. He ran different, he took longer to speak then others, and he had a hard time with his hands and writing, but he did well and just loved being in school.

In 4th  grade he was placed into G.A.T.E a gifted and talented education program, that is where we all started noticing how Austin’s differences were causing him problems. Austin had to work hard to keep up and his speech and writing problems slowed him down. He would talk in what the teacher described as cocktail conversation. He could read and comprehended at high school level, yet Austin had parts of his brain that just did not work.

In 5th grade Austin became a kid both in G.A.T.E. and in special education, he loved G.A.T.E class. He especially loved being in plays. Austin could sing like a bird, he was a great actor, and he had a memory like a steel trap.

Kids at this age also knew something was different with Austin some were downright mean. It got much worse as the years went on.

The summer going into 6th grade Austin needed a revision a possible replacement on his shunt. When the Neurosurgeon went in all Austin needed was to lengthen the tube from his head to his belly.

In 7th grade Austin was being babysat by a friend while my husband and I took in a movie, when we returned home our friend asked if Austin always had a hard time answering questions. I went to Austin and his eyes were off balanced and he could not answer much of anything. At the Emergency Room the head CT showed Austin’s shunt had the tube pulled out and Austin was going to need a new shunt. Austin was admitted, they took out his old shunt, and  placed a new shunt. The new shunt did not work, something was wrong with the valve, so they placed another shunt in.

Austin was very sick, he spent 30 days in the hospital and had external brain drains, they burred another hole to place a shunt in another area to see if it would work, then they placed a programmable shunt in the new area, Austin came out of the operations with bad tics, his muscles would pop and spasm, recovery was slow.

Austin’s memory was not good, his walking and balance was off and he had little energy. Austin worked hard to do all his school work, his make up work, and continued to go to school. He knew if he wanted to stay on the college track he had to complete Algebra. College is all Austin wanted: he wanted to become a doctor. So Austin worked very hard, the demands were more than any kid going through so much should have ever have had to go through.

Austin then formed cysts in his brain they had to fenestrate this cysts, the fenestration did not take and Austin had many complications, he was regressing and his short term and working memory were shot. As Austin said he “couldn’t remember what he forgot”.

Austin had a terrible seizure in which the doctors put him into a drug induced coma. The neurosurgeons had to place an additional second shunt into Austin’s cyst due to his brain now was non-communicative. Two parts of his brain were being drained separately. In all Austin had 2 shunts, 36 ER visits, one Airlifted helicopter emergency, one bowel adhesion operation plus, he lost so much time in school, it was terrible. Despite all that, Austin was still determined to go to school to make it all up, to graduate with his class, and to go to college.

In 10th grade Austin stopped having surgeries. Austin was left with bad memory loss, tics, slowness, no energy, if stressed, Austin would lay down, then his head would bob to the side sometimes he would go mute, it must be his shunts we thought, he saw many top neurosurgeons for 2nd opinions, which took away from his school,  then he started having seizures, then next came episodes of periodically going paralyzed from the waist down, it was terrible to watch, but only happened on occasion,  his memory got worse, he was having a very hard time in school, yet he worked hard kept himself in school.

Austin Graduated High School with his class, yet he missed being able to go to a four year college by 10 credits, he had been so sick and had so many medicines to adjust to, he just missed it.

Austin is now going to Junior College, the day we moved him to college he had an appointment with the neurologist to check his seizure medications. and get a report after he had a 4 day ambulatory EEG, on that day Austin was diagnosed with still having seizures and a movement disorder most likely Dopamine Responsive Dystonia, I’m not so sure it is not some type of Parkinson’s, caused by all the surgeries and the meningitis The full diagnose is still pending, the neurologist placed Austin on an L-dopa medicine and it has worked very well, he has not gone paralyzed since he started this medicine.

On the drive to Austin’s new apartment next to his college,  I asked Austin how he felt about this new diagnose, he in his always determined way he said,” I am no different today then I was yesterday, all I want  to do is go to college”.

And that is exactly what he did.  Austin Hitchin is attending Orange Coast College in Costa Mesa,CA. He loves to play guitar, write music, sing, and act in local theater. Austin will be pursuing a certificate in Neurodiagnostic Technology and eventually plans to become a neurologist.

By Deborah Hitchin

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

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