Stories From the Heart: At The Supermarket

When our son Franklin was diagnosed with Autism at the age of three, my husband and I were very concerned about the emotional needs of our five year old daughter Marina.  We wanted to make sure that her needs were being met in the midst of the flurry of therapy, workshops, and support groups we were attending to support our son.

One day when the four of us were out at the supermarket, our son started to act strangely and talk in his gibberish to a couple in the market.  After seeing the puzzled looks in their faces, our daughter promptly approached the couple, and said with a big smile on her face, “My brother is special. He’s artistic!”

At that moment, I felt the love and understanding in her heart for her brother, and I knew at that moment that everything was going to be OK.

Now, almost ten years later, our daughter Marina is growing into a beautiful, understanding young woman…and she loves and supports her brother now, just as much as she did when she was five years old.

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: Put a Twist on It

It was a cold Fall day as I took my seat in my Introduction to Psychology class.  All the leaves had fallen off the trees on campus and a brisk wind howled through the campus building doors. There were about 60 other bright-eyed, young, “know-it-alls” in class with me as the professor started to lecture.  Half way through his lecture about neurons and synapses, the professor announced that we would be having a visitor to the class today, and introduced an attractive couple that had just moved back to the US from England.

I listened while the woman talked about her young son, Jacob, who had been given a diagnosis of Autism, right prior to their return to the US.  “What’s Autism?” I thought.  I had never heard the word before.  What did it mean?  She talked about how Jacob didn’t know his name.  How he wouldn’t respond to it when someone called him.  How when you walked into a room, he didn’t lift his head up to look at you.  How he never acknowledged anyone with even a simple hug; how a hug hurt him.  How he wasn’t able to talk and how he had some “odd” behaviors.

The young couple sent around a picture of their son, Jacob. When his picture made it to me, I was confused.  I sat there and starred at a beautiful little boy.  He had the bluest eyes I had ever seen.  And while they were not looking at the camera, you could tell how angelic he was.  He didn’t look like there was anything wrong with him, how could he have Autism?

They passed around a signup sheet, looking for volunteers to work with their son.  I placed my name on it.  It would be good experience I thought.

The first time I met Jacob, he came toddling into the family room from the kitchen.  I remember getting onto the floor and saying “Hi, Jacob”, but he just walked right past me.  Actually it looked more like he had pranced right past me on his tippy toes.  But there was no response to my friendly attempt to meet him.  I found it odd.  After some additional time had passed, and more people showed up at their home to meet Jacob, we learned about an intervention they wanted to use with Jacob, called Applied Behavioral Analysis.

I sat horrified as I watched this little boy scream, kick, hit, and scratch at his mother in her attempt to get him to sit in a little chair.  About 20 minutes into the therapy, with tears streaming from my eyes and my heart ripped in half, I got up and left the room.  Teresa followed me out.  I sobbed as I explained to her that I was not going to be able to do that to him.  I told her that I thought it was horrible to make him scream and tantrum like that.

She listened calmly and told me she knew how I felt.  She told me that it killed her to see Jacob like this as well, but this intervention was one of the best ways to teach Jacob the skills he would need to be ready to go to school in 3 years.  She asked me to please come back a few days later and try a session with him.  I reluctantly agreed.  More surprisingly, I actually did return.

During that first session with Jacob, he didn’t scream at me when I asked him to come. He came to me and sat in the chair without incident. I wondered what had happened in the days since my last visit. I was instructed by his mother to tell him “Do this”, and then clap my hands.  I did as instructed and then took his little hands and helped prompt him to clap his hands.  After the very first trial, Jacob started to scream and kick his feet.  “Keep going”, Teresa pushed.  I kept presenting trials of clapping hands and with each new trial, Jacob’s screams got more intense.  I could feel the tears welling up in my eyes….I couldn’t believe that I was making this little boy scream like this.  What kind of person was I?

About 25 minutes into the session, I presented the exact same trial that I had presented to him for the previous 25 minutes–“Do this”, then clapped my hands: but something magical happened this time.  There was an instant stop to his screaming, which was replaced by a giggle.  Jacob then took my hands and clapped them for me.  How could he go from screaming to giggling in a second flat?  Did he really understand what I wanted him to do all this time?  Why did he clap my hands? Teresa, who was watching the session, just cried.  “He’s getting it”, she said.  “What a sense of humor he’s got”.

This was my first introduction to Autism and my first experience working with a child with Autism.  I was 18 and so naive about what it was and how to treat a child afflicted with it.  Thankfully, Jacob saw it in himself to teach me the ropes and to even make those magical transformations in my presence.  Without his magical transformation in front of my eyes on that very first day, I don’t think I would have had the strength to return to work with him again, or to forge on in this field for the last 12 years.

He taught me that not everything is as it seems….for even in his biggest tantrums, a giggle could literally be right around the corner.  With a gleam in his eyes that said, “Yeah, I get it. Now let me put a twist on it!”

* 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: Take Flight

Aaron had been diagnosed with PDD-NOS when he was 2 years old and was just starting to be able to communicate verbally when I started to work with him at 4 years of age.  I was his in home therapist and worked with him one on one for approximately 30 hours each week.  On a typical day, I would shadow Aaron to the diagnostic kindergarten classroom for 1/2 a day and then would spend the second half of the day working with Aaron on pre-academic, academic, and communication skills at his home.

I loved working with Aaron and watching his eyes light up when he learned something new or was able to complete a task that had previously been too difficult for him to master.  One Spring day, in the afternoon, we had been learning about kites and how to fly a kite.  As part of that lesson, we were going to go outside and fly a real kite so he could have the experience of participating in that activity.

It was a wonderful day to fly a kite.  The winds were blowing and I thought it would be relatively easy to get the kite to take flight.  I showed Aaron how to hold the string and kite handle, so I could throw the kite into the air.  After several attempts, the kite was still on the ground and a very disappointed little pair of eyes just stared at me.  I told Aaron that we would try one more time, but if we couldn’t’ get the kite into the sky; we would have to try another day.  I tried again to get the kite into the sky…..Aaron held the line steady, and I tossed the kite up….it came crashing right back down.

I looked at him sadly and said “I’m sorry honey…Maybe we can try again tomorrow”.  With a look of disappointment that words will never be able to describe, he looked at me and said, “one more time”.  Exhausted, I looked at the sky and just pleaded my case to the Lord up above, “If you have a sense of humor, you will put this kite in the sky!”

With a renewed sense of brilliance in his eyes, I took the kite and threw it into the air.  A gust of wind picked it up and the kite took flight!  Aaron just smiled this little grin…it was like he knew that this time the kite would take flight!  After we got the kite high into the sky, we sat on the curb together and watched it dive and soar.  He was so excited, and the laughter and gleam in his eyes was the most vivid I can remember ever seeing or hearing.  A photograph that his mother took of us that day sitting on the curb holding the line to the kite still echoes of his laughter in my office today…almost 6 years later.

If it hadn’t been for his plea to try just “one more time”, we would have never gotten that kite into the sky that Spring day.  I’ve often thought about how ironic the situation was that Spring day. I was there to help Aaron learn and to teach him to never give up, but on that day, it was Aaron who taught me what it meant to never give up.

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: A Skunk Story, Glenn and I

My good friend, Louise, invited me to meet her cousin, Glenn.  During birth his brain had been deprived of oxygen which resulted in a number of challenges.  Both of his parents died in a car accident, so he had been taken in by their grandparents. Thirty-four years old, he was able to ride a bike everywhere and pick up groceries for his grandparents.  He could dress himself if someone chose the outfit for him and keep himself neat and tidy.  Loving to be outdoors he was able to cut lawns.  He lived in a small community that cared for him and went out of its way to find him jobs that he could do.

When I met Glenn I was immediately taken by his charm.  Six foot four, large and powerful, he looked like a man who worked outside and had a masculine, no nonsense approach to life.  The immense juxtaposition was that he stood behind my friends five foot four, small bone frame, trying to hide, holding his hand in front of his face as he peeked at me between his fingers.  Sweet, curious and innocent; I liked Glenn immediately.

Glenn loves animals, Deb.  Maybe you could tell him about some of yours. Louise offered, trying to make a bridge between us.

Louise and I sat down, trying to appear oblivious to tall, big Glenn hiding his face behind his large hands.  For me, these situations always seem more, normal, than trying to fit in at a luncheon or cocktail party.  I love people but I hate making small talk.  Being with Glenn, big hearted and curious, and his cousin who adored him, was much more real and authentic to me.

Louise and I started talking about my Appaloosa Pony, War Hand.  He was all white, with big black polka dots and we talked about his special personality, how he was always pulling tricks on people opening corral gates, and then opening doors and walking into people’s homes to visit them and other original, unhorse like behaviors.  I spoke directly to Louise, occasionally peeking back at Glenn.

This was comfortable to me as at the time I still had trouble speaking to strangers and Louise was in fact one of my favorite friends, tolerating my differences and encouraging me.  Occasionally she would turn to her cousin, Wow, Glenn, did you hear that?????  War Hand went into that lady’s house to visit her!  Glenn, can you imagine?  War Hand puts his front hooves on the corral fence, stands up tall, like a human being and lets them know it’s time for breakfast for his goat friend, Capricorn, and himself!

Glenn would smile.  His hands came away from his face. He had a sense of humor and started to relax enough to chuckle.

“Hey, Deb, why don’t you tell us about your pet skunk, Arpege? Glenn, did you know that Deb had a pet skunk? . . . Glenn, you know what a pet skunk is, don’t you?” Louise asked.

I glanced over at Glenn, trying not to be intrusive, I saw him nodding his head rapidly, up and down, above his massive shoulders.  As long as I didn’t look at him directly, for too long, I knew that he was starting to connect.

My animals are one of my special interests the interests that Aspies are known to have that can drive many people crazy as they talk about them on and on.  In my twenties I became aware, that one shouldn’t go on and on about ones affinities the things that occupy my mind all day long.  But Glenn and Louise were a rapt audience.  Glenn wanted to know about Arpege.

I was delighted.  I told how I rescued Arpege, as a skunk kitten, in Maine when she had become separated from her mother.  I told how my father and brother were afraid, but that she never sprayed me.  Home in Connecticut, a veterinarian removed her scent sacks so that she would not be able to spray.  I described her two gaits: a waddle and the characteristic bounce, like Peppy La Pue, in the cartoons. Arpege had had a wonderful sense of humor which she demonstrated by chasing my mother through the house, up the four levels of stairs, at a bounce, as she carried the laundry, screaming each time.

My brother, also with Asperger’s Syndrome, and I spent our youth imitating the physical actions of others.  I often jump up and start acting out the action of the story that I am telling, rolling along with the pictures streaming through my mind, my natural way of thinking and processing.  In the easy atmosphere with Glenn and Louise, I found myself acting out Arpege’s many antics.  Soon we were all giggling uncontrollably; it felt like we knew each other for many years.

We spent the afternoon laughing as I told my animal friend stories.  Glenn sat down with us and started asking questions.  His shyness, and mine, dissolved.  When their grandparents came home, he kept saying, Deb has a skunk! Tell them about the skunk!

That afternoon took place over thirty years ago.  Since we lived many states away, I never got to visit again.  But I never forgot Glenn’s warmth, big heart and sense of humor.  For a number of years, Louise told me that when she would visit her grandparents that Glen always remembered and would ask, “How’s Deborah?  She has a skunk! “

Eventually Louise moved to the opposite coast and we lost touch, as often happens as the years pass by.  But that afternoon, the deep connection and the fun we had has always stood out in my mind.

Glenn had immense hurdles to face; daily life tasks that many do on remote pilot, were often insurmountable obstacles to him.  Given deep respect and care, he developed self esteem so that he could meet and touch people on a very deep level.  All of us who are faced with differences can find, in the interactions with life and the vast majority of the human population, frustrations over not being able to fit in, and be normal.

But I find courage when I think of my afternoon with Glenn, raised in the atmosphere of his grandparents, loving and a caring extended family, and community, he was able to radiate his special energy and big heart.  Diagnosed three years ago with A.S., at the age of fifty, I finally understood my wonderful but different life.   Suddenly my special affinity and focus on animals and other special topics, my affinity with other, special needs people, made sense.

I think of the special day with Glen; I am motivated by his special gifts.  He accepted me, knew who I was, and reflected that back in a way that few others ever had.  I know as I join the movement for early diagnoses, tolerance and caring that all of us who face life challenges can be helped to find our special place in life, so that we can share the gifts that God has blessed us with.

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: Learning Friendship

“Don’t look at me”, “Don’t touch me”, “Don’t sit near me”, and “Too loud, too loud” are the sensations that scream from within.  “Why does the world have to be so confusing?” “It hurts me.”

My Molly is 5 years old.  She came to us at 20 days old as a foster daughter.  Molly did not bond to me, but to my husband.  Very unusual for foster babies in our home.  I knew there was something different about Molly, but what?

At three years old Molly was diagnosed with Autism, as tears rolled down my cheeks.  I suspected Autism, yet to hear the words out loud still hurt a mother’s ears.  By this time, we had adopted Molly and had much love invested in her.

We struggled to help Molly adjust to this world so full of strong contrasts for her.  A light breeze to us, felt like a tornado to Molly with “things” swirling about.  The tornado crashed across her body.  The leaves blowing in the trees the sound of a freight train.  The sights and sounds that we crave are the very same things that hurt Molly.

Human contact was tolerated at best.  “Why won’t Molly sit on my lap?” my husband questioned in complaint.  I told him, “You have to  be a chair”.  “I let Molly sit on my lap and stop my longings to wrap my arms around her.”  Gently, I explained, “Molly gets on your lap, you hug her.  “Quick as a flash, she’s gone.”   “You have to learn how to just be a chair.”

An emotional connection with another person is often a rare thing for a child with Autism.  I told Grandma, “Don’t feel bad, Molly doesn’t hug me either.”  While her cousins played in their little group, Molly sat on the sidelines comfortable in her own world.

I remember my first, best friend, Kathy.  We shared everything.  We played together every day, back and forth at each others’ house.  We held hands.  We were best buddies.  I wanted Molly to know the gift of friendship, yet how this would ever happen was a mystery to me.  That kind of closeness with another human was against the grain of who Molly is.  So many obstacles in the way.

Last year Molly attended a special school for Autistic children.  She quietly sat in class, day after day.  At the beginning of each school day, Molly would whisper, “My name is Molly.”  Molly was in class, but not really with the class.  They could have been in another room for all that it mattered to her.

This year began with a new school and a ride on the bus. How frightening the bus was for Molly.  A new driver?  A man driver?  This sent Molly in a spiral of anxiety.  She craved sameness in order to have some control over her world.  Weeks went by with anxiety and tears.

One day a wonderful thing began to happen.  Molly started watching a little girl, Claire, during playtime.  They started swinging next to each other.  No words were exchanged, just closeness, sameness.
The teachers began to tell us, “Oh, Molly and Claire, they are next to each other always!”

Molly and Claire began sitting next to each other on the bus.  Always.  Soon, at home, Molly would mention Claire’s name.  We began sending little stickers and such for Molly to share with Claire on the bus.  Claire would bring little things for Molly.  We all knew something special was happening and happily encouraged them.

The school year came to a close and soon summer school began.  Molly cried when she saw a new bus driver.  She didn’t see Claire on the bus, either.  Now her world was beginning to unravel.  Getting Molly on the bus that day was not going to be very successful.  Molly cried, her eyes searching the bus not knowing what to do.  Nearly hysterical, Molly suddenly saw another classmate, Katerina, on the bus.  She started crying, “I need Katerina, I need Katerina.”

It was simple and to the point.  Molly needed human contact.  Molly needed Katerina.    Tears filled my eyes as I saw Molly reach out to yet another child as a bridge to the world.  My heart aching for the distance she had traveled to reach outside of herself.

Molly is learning friendship and human contact is a good thing.  I am reminded through Molly that friendship does make the world a gentler place.

Author Unknown

* 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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