THE AUTISTIC TOUCH

HANDS


 

                                                                   

A NOTE TO MY READERS

On this site I am sharing the manuscript of a book I am hoping to publish. Please be aware that I don’t plan to reveal it in its complete form, but I hope the stories I am able to enter will be of interest to those who are facing Autism as well as those who work with Autistic children.  Also, I will be open to suggestions from you as to what might make this book (once ready for publication) the best that it can be.  So many of you are struggling with the issue of Autism and might even choose to share stories of your own.  A great deal of this book will be here for you to read and enjoy.  This is not a means of manipulation to encourage you to purchase the book once it is finish, rather an opportunity for others to learn from my mistakes and victories as I write.  Who knows?  The book may never reach the point of publication, but at least I have an opportunity to share with those of you who are going where I have been during  these past twenty two years.  Thank you for reading and please feel free to respond as you like.

Mary Kathryn Donachy

 

 INTRODUCTION

THE AUTISTIC TOUCH

 

She sits on the examining table and waits for the news.  The physician walks out of the room.  What is going to be the answer?  She has been waiting, hoping, trying, and longing for so long.  Would the diagnosis be like every one before it?  Or would the report fill her heart with joy?

Slowly the doctor returns, looks directly into her eyes and in a soft voice with a smile on his face says, “Well, Tina (he hesitates as though he is not sure just how to break the news to this anxious mother-to-be) you’re going to have a baby!”  His voice rose as he made his last remark.

Tina felt a surge of excitement like none she had ever felt before.  During the six years of her marriage she had prayed for a child.  Was she dreaming?  Could it be true?  Tears of happiness filled her eyes.  She jumped off the examining table and rushed toward her doctor, unable to resist hugging him so tightly. 

“Oh, thank you,” she said, laughing and crying at the same time.  “Thank you, Dr. Morris!”

He laughed.  “Don’t thank me!” he said, returning her embrace.  “I had absolutely nothing to do with it.  This is a miracle that you, your husband, and God created.  I am so happy for you, Tina.”

She left the office that day feeling that this was the best day of her life.  Of course, there would be an even better day in seven months.  Then she would hold the world’s most perfect child in her arms.  She rushed home to call her husband.  Or should she wait until her got in from work?  Yes…she would wait.  She wanted to see his face when she gave him the good news.

When Frank walked into the house the first thing he said was, “What did the doctor say, Tina?”  He was prepared for the same old story.  He was sure he would spend the next several days comforting his lovely wife in her disappointment.  Tina tried to have a serious expression on her face, but that didn’t last long.  Her heart was so full of delight that it showed on her face.  Her sparkling eyes gave her away.  No tears? Frank thought.  Could it be true?

Tina nodded as though she could read his mind.  He picked her up and danced around the room.  “We’re gonna have a baby?” he shouted. 

“We’re gonna have a baby, Frank!  We’re gonna have a baby after all!”

The days ahead were busy ones as they prepared for their first child.  Would it be a boy or would they be blessed with a baby girl?  It didn’t matter.  All that mattered was that they could have a healthy, happy baby.  Tina began to eat healthy food, exercise, and worked toward making her child’s temporary home inside her body the perfect place to develop and grow.  Frank worked extra hours to increase the family income.  He loved the word “family” and used it often. 

“We’re going to be a family, Tina.  We need to be prepared financially in order to give this child everything it needs.  We need to start a college fund right away.”

Tina would laugh at Frank’s premature ideas and he would find her intense interest in various toys, furniture and nursery amusing.  After all, they had plenty of time.  One would think the new baby would be moving in right away.  They talked about love and discipline, education and even planned outings when the child was old enough to enjoy things like the zoo or the aquarium.  This would be the perfect child, well mannered and above average intellectually.  Who knows, he/she may be an important figure in history one day.  They would do everything possible to help this baby to reach every goal.

The birthing was normal.  Tina wanted natural birth for her child and Frank was there throughout her labor.  What a thrilling moment when the doctor placed that baby boy in his mother’s arms.

“It’s a boy,” Frank said, the tears in his eyes expressing his happiness.  “That glove will fit him perfectly one day.”

“Glove?” Tina questioned.

“Yeah,” Frank admitted.  “I couldn’t help myself.  I knew if the baby was a girl I could give the baseball glove to your nephew.”

 “Frank,” she laughed.  “That’s as bad as my buying that cute little dress in case it was a girl.”

“Are you disappointed?” Frank asked.

“Oh, no,” she answered as she kissed the tiny forehead.  “He is exactly what I want.  Isn’t he perfect?  Just as I knew he would be.”

They named their son Timmy.  It just seemed to fit.  They went from bassinette to crib, amazed at the wonder of their child.  He was all they thought he would be.  He was more beautiful than usual with his dark curly hair and big brown eyes.  He was beyond the average expectation as far as intelligence goes.  They felt they had the perfect child.  They would return from each physical check-up with a shining report. 

“I believe you have an exceptional child,” the doctor had said.  “He has an amazing vocabulary for a child so young.”  Frank squared his shoulders and Tina smiled as if to say, “Oh, we already knew that.”

And then without warning, Timmy began to change.  It wasn’t a gradual change in personality, but abrupt and alarming.  The bright shining eyes that sparkled at play didn’t look into their eyes anymore.  It was as though he didn’t want to see them.  They would call out to him and instead of running into their arms he refused to be picked up.  One might say that Timmy went somewhere inside himself and no one could reach him.  He began to do strange things that had never been a part of his routine.  He didn’t cry, wouldn’t make eye contact, and went from the responsive little boy to no reaction at all.  Where did Timmy go?

What is more devastating than the diagnosis of autism.  I suppose there are those of equal significance, but to the parents of an autistic child it would be difficult to find one.  Families often split, siblings are negatively affected and the lives of all family members experience extreme change.  At this point in time there are programs that help.  There seems to be no absolute cure, but advancement has been made.  However, in the story I am about to tell there was no diagnosis.  I wish there had been.  I would like to have heard someone say, “This child is autistic” and explain to me what that word meant.  All I heard was, “Oh, Jenny will be fine in time.  She’s just a slow bloomer.”  How could that be when she was so above average only a week or so before?”

The story of Frank and Tina is a fictitious one, but the story I am about to tell is so true.  It is the story of Jenny, a beautiful, so perfect child who suddenly disappeared to bring someone we didn’t know in her place.  It’s the story of a struggle, of love, and a story of successes as we moved through twenty-two years of autism.  I hope our story is of help to those who are beginning the journey of autism as well as those who, like our family, have struggled along for so many years through trial and error.  We’ve come so far, but we have yet so far to go in our efforts with Jenny.  Some of our techniques may work for you, some may not.  You may have ideas that you would like to share that could be of help to us also.  You will find here ways to share those thoughts and ideas with me.

Thank you for being here with us in our stories.  May they be of support to all who read them

 



______________________________________________________________________________



CHAPTER ONE

ECHOES OF LAUGHTER

 

I couldn’t help laughing at the cute little gestures as Jenny began trying to tie her tiny white baby shoe. It was awkward for her, but it was like a game she loved to play. I had never known a child so young, (fourteen months, to be exact) to have such fabulous small muscle control. Her eyes twinkled as she looked up, enjoying my chuckle. She was amusing someone and that was fun. She had such a wonderful sense of humor.

She did it. The ties had to be evenly placed at the top of each shoe which took a little time, but once she was finished it was to perfection. I picked her up, so cute in her frilly little lavender dress and hugged her close. Her little arms circled around my neck and I felt the tender baby kiss as she giggled happily.

“Are you ready, Baby?”  We called her baby often. Her tiny frame made that nickname so natural. I grew up with that nickname because I, too, was the smallest of the children in our family. I was one of five children.

 She struggled out of my arms and toddled over to her teddy bear, wrapped it in her arms and toddled toward the door.

“The doctor is going to say, ‘Hi, Jenny. You look so pretty today’”, I remarked. One would think that a child that young would not be interested in her appearance, but Jenny was. We learned very early that if she had a lavender dress, she must have a lavender bow and the same color stockings. Her panties were frilly lavender lace. Perhaps I started that, because I enjoy corresponding colors also. However, with Jenny it took root.

 We arrived at the doctor’s office a little early and I watched as she played on the toys in the pediatrician’s office. It was a large waiting room with a hobby horse, a circular toy with large beads that circled around to tease the toddler’s mind. We waited there for a short time and the receptionist commented on how advanced Jenny seemed to be at such a young age. Actually, that didn’t really surprise me. I had a son who was an exceptional child so this was not so unusual for me. He was rejected from Kindergarten because he was already clipping articles from newspapers and creating his own scrapbooks at the age of five. He was reading little books at one year of age. I wasn’t surprised at him either, honestly speaking, because he was my first child and I didn’t realize it was rare. Now, with Jenny, I accepted her genius as natural and normal.

The pediatrician had a special interest in this child. He would always comment on the fact that she was exceptional. He came to the waiting room, took her by the hand and said, “My, you look pretty today Jenny. Let’s see if you can untie those shoes and let me look at those little toes of yours.” He thought that the idea of her ability to tie her shoes was unique. He also enjoyed watching her pull the little string to neatly untie them.

“This place is a mess back here, Jenny. Dr. Goodsite is building new rooms for more kids like you. See! We go around this way, now we go back that way. It’s okay! We’ll find the office, you bet!” I hoped as I followed them through that I would be able to find my way back to the waiting room.

 Her examination was routine except for the fact that it was time for immunization. He explained to her what he would do and that it would sting for just a minute. That didn’t help much, but she was comfortable with him. The nurse could not give her the shot. Only the doctor could attend her in any way. She already had her own idea of who she could be comfortable with.

After the examination was over and the tears from the immunization were dried, I dressed her and she again tied her shoes while the doctor watched in amazement. She started to slide off the table and headed for the door. I rushed to grab her hand because I was afraid for her to try to find the waiting room on her own. It was such a maze with all the reconstruction going on.

 “Stop!,” the doctor said, almost as an order. “Let her go! She knows just how she got here and she will know just how to get back. Just watch! You’ll see what I mean.”

 He was so right. She made all the little twists and turns that were required to get through the construction on the way to the patient rooms, made her path as though it was direct, and went back to the hobby horse she loved to ride while I stopped at the desk to make the next appointment.

         

 

 

__________________________________________________________________________________ 

 

CHAPTER TWO 

THE TRIP

As I buckled Jenny into her car seat with the stick of her elephant shaped sucker in my teeth she kept saying, “Mine! Mine!” desperately trying to retrieve her candy. It was difficult to keep from laughing at her. I would have dropped the candy for sure if I gave into the chuckle in my throat. It was so cute, watching her little hand open and close into a fist, grasping for that tempting pink item in front of her.

 “She’s hungry”, I thought as I handed her the candy. She squealed with delight as she returned it to her lips. She had already been enjoying it before we got to the car and had really fought to keep it. Now she was content as I put the key in the ignition and headed for home.

I was thinking about the upcoming trip we had planned for the next day. We had our plane tickets and would be leaving around 7:00 a.m. the next morning for Hershey, Pennsylvania.  Paula had arranged to be off work for the week ahead to care for Jenny. Mary Beth would be going with “Granddaddy” (as everyone now called him) and me, which would give her a chance to meet the family.

Granddaddy had undergone heart surgery several weeks before and the wires were trying to work their way out of his chest. A dear friend, was a cardio-thoracic surgeon in Hershey. We decided to let him see what was going on with Granddaddy, correct the problem, and at the same time visit with my family back east for my birthday. Mary Beth was so excited. We had taken her to Hawaii when she was eighteen months old, but she had no recollection of the flight. I had to smile as I thought of how cute she was with her little flight bag. She had packed it over and over again, putting in a toy, taking it out, replacing it with another, and so on. She had been playing with that little bag for over a week now.

As soon as we went into the house I noticed that Granddaddy had already prepared lunch for the four of us. He had warmed over spaghetti from the night before. I put Jenny in her high chair, put on her bib, gave her a plate and she was more than ready for a hearty lunch. She was already eating with a fork and although she turned her spaghetti upside down before putting it into her mouth which resulted in her getting it all over her little face, she managed. She always had a hearty appetite and was learning to handle her food and the utensils exceptionally well. Of course when it came to spaghetti she would need a quick bath before leaving the high chair.

“I hope Jenny doesn’t carry fever with that shot,” Rex commented.

“It shouldn’t be much, if any,” I answered. “Paula will give her Tylenol. In fact, I gave her some before we went to the doctor this morning. That may ward off complications. Help with the site, too.”

 After lunch I put the girls to bed for their naps and proceeded to prepare for the trip. It had been quite a while since I had seen the family and I was getting a bit anxious myself. By the end of the day Jenny seemed fine. With the Tylenol her temperature was normal and she wasn’t fussy. Jenny was a very happy, well tempered child. It took a lot to shake her – like taking her elephant sucker. She hadn’t liked that, but it hadn’t taken much to settle that problem. Just “give it back”!

The following morning we left before Jenny awoke. I went to her little crib and looked down at this beautiful baby in her little pink nightgown. She was lying on her right side with her left leg propped up on her teddy bear. She was only partially covered with a light blanket and that always caught my attention. When she was just an infant she had to be tightly swaddled in receiving blankets, even to covering her face. It must have been a need for security, as being so wrapped brought her comfort. If her blankets loosened she would cry for help. Now, here she was, sleeping normally and securely without need for the swaddle. I think I recall that morning so vividly, because it would be the last time I would see Jenny as we knew her – bright, playful, funny,  alert, and aware of all around her.

 Our trip went well. Granddaddy’s problem was solved on the second day, Mary Beth was enjoying being spoiled by the family, and I was privileged to have much needed time with my brother, Howard and his wife and my best friend, Wanda.  Howard had accomplished much in his life and to tell it all would be a complete book in itself. He and I had always had such a warm, wonderful relationship.

 On the third day, Paula called. “I didn’t want to spoil your trip, Mother, but Jenny has really had a tough time. Her temperature went so high and I couldn’t seem to get it down, no matter what I did. I took her to the doctor this morning and he is treating her for a severe ear infection. It’s in both ears. Maybe I should have called sooner, but I thought it was probably a reaction to the injection.”

 That was all I needed. I changed our flight for the next day and we hurried back to Tucson.  I knew Paula would do as well as I in caring for Jenny, but there was something in the sound of Paula’s voice that sounded an alarm in me.

 The trip home was uneventful. Mary Beth got a window seat and chattered most of the way home. All the way home I had this feeling of doom. Why? This wasn’t the first time one of the kids had fever or ear infection. Why was I so “up tight” about this? I sensed something I couldn’t explain, even to myself. Once we arrived at the house, Mary was eager to find Paula and to tell her about the clouds, the lights and cities she had seen from her window and the fun she had in Pennsylvania.  As for Granddaddy and me, we were totally unprepared for what we would face once we walked through that door and anxiously looked into the face of our precious little Jenny.

                                                                                               

_________________________________________________________________________________________________ 


CHAPTER THREE

SURPRISE ENCOUNTER

 

Mary Beth had completely lost interest in that flight bag by now. She was occupied with the items she had collected. She had candy from the Hershey Candy Factory, a new teddy bear, a plush cat, a Hershey T-shirt, and several coloring books and little games to play with while she was on the plane. She had them all in a confused stack beside her car seat, readily available in case she decided to use them. She found that coloring in her new coloring books was not the best idea while the car was moving, so she settled for the little puzzle toy that kept her curious mind busy.

“I’m thinking Jenny’s fever is probably gone by now,” Granddaddy commented, aware of my constant concern. “Kids get over things pretty fast. Paula would have called if things were worse.”

 “And how would she have done that?” I said, annoyed that he was assuming something impossible. “We haven’t been near a phone since early morning. That layover was ridiculous. Two hours of waiting and nothing to do.” I had tried to call from a phone at the airport, but I was unable to get through to Paula.

 “We’ll soon see,” he assured me as he pulled into the driveway. I slid out of my seat quickly, unbuckled Mary Beth’s car seat and she was gone before I could even close the door. She couldn’t wait to show Paula her “goodies”.

 I really enjoyed the house in Tucson. It was a stone house with a nice front patio. The lovely yellow roses were already beginning to bloom. There was a roomy vestibule as we entered the front door with an adequate coat rack on the left.  The living room was directly beyond the vestibule. There was a beautiful raised hearth stone fireplace and a wide mantle piece above. You could see through the sliding glass doors into the back yard when you came in the front door.  Immediately to your right once you entered the living room was the entrance to the kitchen.  There was a short wall between the living room and kitchen upon which the piano sat.  Then on your right was the dining room.  You could enter the kitchen from the living room and after walking through the kitchen exit into the dining room.  You could actually go in circles from the living, through the kitchen, dining room, living room and back through the kitchen.  This was one of Jenny’s favorite things to do, even before she was able to walk by herself she would hold onto your fingers and literally run in circles laughing that beautiful laugh of her’s as she would want to go around again.

The bedrooms were to the left after walking through the vestibule. There were three large bedrooms and two bathrooms – one in the master suite and the other main bath was centered in the long hallway.

I describe the house because I believe it is better to visualize the people as they function if we are familiar with their surroundings. There are important things to say about that wonderful home in the stories to follow. This is where Jenny moved into a world of her own.

I dropped my purse on the couch as I walked into the living room. The back of the couch faced the vestibule, the front facing the unique fireplace. Jenny was sitting on the floor with her favorite bucket of toys, which consisted of more than fifty of those famous Little People.  They were so colorful and Jenny was always attracted to various colors. She would take them out one by one and when the bucket was full she would pour them out and begin again.

 I rushed over and picked her up, feeling her chubby little face for fever. She was cool. “I gave her Tylenol about two hours ago,” Paula said. “She responds well to the Tylenol, but her temperature goes back up after three hours or so.  It’s been a challenge, keeping her temperature down since the shot.”

 “But that has been days ago!” I commented. “It can’t be the shot.”

 “She has an ear infection,” Paula reminded me. “But it’s like the shot did something to her ears.”

 “That’s impossible,” Rex said, brushing away the idea that there could be a connection. “The antibiotic should be taking affect soon. Just give it another day.”

 “Hi, Baby,” I said as I hugged Jenny.  “See, Grandmother and Granddaddy are home. Look! Mary Beth is back. See Mary’s new bear?”

 The only response I got was the effort she was making to get out of my arms and back to the game with her blocks.

 “That’s strange,” I said surprised. “She’s always so excited when I return from ANYWHERE! I go out to the store and return and she is so happy to see me. I think she must be angry with us for leaving her for so long.”

“I don’t know, Mother,” Paula answered. “She seems…” (Paula hesitated as though searching for the right words). She seems different, somehow…like she’s preoccupied. Like her mind is elsewhere. It must be because her ears are hurting.  Although she’s always been able to entertain herself when playing, Mother, she doesn’t seem to want you to join her in play, nor does she want you to have contact with the toys she is currently playing with.  It’s really strange and hard to adequately describe it.”

By this time I had no choice but put Jenny down. She rushed to her bucket of blocks and went back to work, relieved to be free of my embrace. I went to the bag on the couch that held the new stuffed toy we had brought for her. It was a puppy that barked when I squeezed him. I held him close to Jenny so she could see it easily. “We found this little puppy for you. He needed a home and we brought him here for you, Jenny. See his little brown nose? And he can blink his eyes and bark for you.” She did respond by looking at the puppy, then went immediately back to her blocks. Jenny loved stuffed toys and especially puppies and the ones with sound was always amusing to her. I tried again to put it closer to her and she simply pushed it away as though I was annoying her.

 I was shocked!  Whose kid is this? Where did this person come from? Not only did she not acknowledge my presence, it was as though she wasn’t even there. “It must be that she isn’t feeling well,” I said. “I’ve never known her to react like this.”

CLUNK! CLUNK! CLUNK!  The blocks hit the bucket and it seemed that each one was louder as she threw them in. She had always played with her bucket of toys, but she placed them in. Now it was like she was attempting to be noisy with them. We all watched in awe as she filled her bucket then stood up so she could dump them with a louder sound than when she was filling it, rather than just turn it over as she had always done. Was that anger? Frustration? What was behind her desire to be so emphatic? She sat down again and began the process all over again.

 By now Mary Beth came to see what all the noise was about. She went over to Jenny to hug her and say hello. Jenny didn’t reject Mary Beth’s attention, she just ignored it and went on with her game.

Where did our funny, happy little Jenny go? Would she be herself again tomorrow? Was it just a reaction to the pain in her ears or the fever she had been experiencing? Would we wake up to her laughter tomorrow?  “Surely,” I thought. “She is probably just punishing me for leaving her for so long. Tomorrow will make everything right.”

 


___________________________________________________________________________________


 CHAPTER FOUR


MORNING IS A LONG TIME COMING

 

Although exhausted from the trip, the chore of putting things away, feeding and bathing the children and getting them to sleep, I found myself sleeplessly staring into the darkness. I had no idea what had happened to this precious little child. Surely she would be herself again by morning. I kept telling myself to have faith, to trust in God’s wisdom and love for all of us, but sleep just wouldn’t come. The night was endless.

 At the first sign of dawn I went to Jenny’s crib. She was sleeping soundly without a care in the world. How sweet she looked, lying there in the white nightgown I had embroidered for her. It had little flowers, smiley faces, and two little angels looking longingly at each other. I felt the urge to pick her up and hold her close, waiting to feel her snuggle to my cheek, but the fear of what I might experience when she awoke overtook me. 

 “How silly,” I thought as I walked toward the kitchen. “She’s sleeping nicely, so her ears must be healing. She should be fine this morning”.  I opened the cupboard and took out her cereal and began preparing her breakfast. I looked at the clock. Of course she was still sleeping. It was only 6:00 AM. I stopped what I was doing and decided to go back to bed. Maybe I would at least get a quick nap. It was useless. I knew I couldn’t rest until I made some sense of this mysterious event.

 Granddaddy turned to look at me, probably to see if I had finally fallen asleep. I had been lying there ever so still, waiting for a sound from Jenny’s room. He got up then and I knew he hadn’t slept well, a victim of my worry and tossing about all night. I had gotten up so many times throughout the night, just to check on Jenny.

 I could hear him in the bathroom, splashing his face with cold water. Then brushing his teeth. How could he just do his regular routine without looking in on Jenny first? Wasn’t he worried, also? Didn’t he realize the seriousness of our situation at this point? I was sure he didn’t. He was slow to worry about things. He would just put problems on the shelf of his mind and try to avoid them.

 “Mary!” he exclaimed. “Come here! Jenny has found a new game to play. She’s found another way to amuse herself.” He spoke with a positive tone. Jenny was a child who could entertain herself, always trying new things. He was pleased to see that she had created a new game for herself.

 I rushed to Jenny’s crib, so happy that she was having her usual wake-up fun time.  WOW!  And to think I had worried all night.  I reminded myself of the  insignificance of worry. With joy in my heart I moved closer to Jenny’s crib. Paula had heard her father’s outburst and was coming into the room behind me with a look of relief on her face.

 “Good Morning, Jenny,” I said happily. “How’s my baby this morning?”  She didn’t look up. She didn’t respond with the little giggle I was used to. Instead, she was playing the game Granddaddy was so proud of. She was twiddling her fingers, her eyes glued to her hands in deep concentration. The fingers on each hand moved in perfect rhythm, never touching with only the distance of a thread between.

Then there was silence. We watched in awe as she continued the weird finger functioning. We didn’t dare breathe for fear we could change this unusual behavior to something even more astounding. I don’t know how long we stood there, Paula, Granddaddy and I, watching, waiting, just hoping she would stop. Jenny, however, was in total concentration with seemingly no thought of our presence.

Finally, Paula went to the crib, picked her up and tried to hold her. Jenny kept twiddling her fingers, with no response to Paula’s embrace. Paula put her hand on Jenny’s and Jenny jerked hers away in apparent annoyance. It was as though she was thinking “These are my fingers to do with as I wish.” She didn’t utter a sound, but instead wriggled out of Paula’s arms. She sat down on the floor and continued her finger play.

 It was finally “tomorrow”. The tomorrow I had hoped for, the tomorrow that would make everything right. Rather, it was the first of many tomorrows to come, each to introduce change and the reconstruction of Jenny’s life as well as the lives of all who loved her. It was the beginning of research, the beginning of a quest to equal no other. From this day forth we would realize that although we were approaching change at an ever increasing speed, we must be capable of adjusting to each new phase of our lives for the sake of Jenny.

In our journey of life we often become comfortable with environment and our way of life and dread the idea of change. We often fear change that, unbeknown to us can bring happiness as we’ve never before experienced. Then we look back and wonder why there was ever dread at all – how we could have let such beauty lie in waiting while we pondered on decision.

Then there are those changes that denote loss, frustration, and confusion. Changes that bring despair, grief, and sorrow. There are those changes made as a result of wrong decisions and we know we must create new beginnings to correct the errors we have made.

 This was not a decision. It was as though we were moving comfortably in a right direction and life somehow flipped the whole family around and sent us on a dark, unfamiliar path without a guide to show us the way.

We talked. We worked together. We prayed often – silently and together. We would not allow ourselves to remain in our cozy comfort zone, but we would face the challenge of the unknown with the simple truth that our only security in this world is faith in our Creator. Often when there is no one else to go to, we learn that He is all we need.

There is inside each of us a still, quiet voice. The stress and confusion of the world and the struggles of life often drown out that voice. We learned to find times to be still and listen. We listened to each other, we listened for responses from Jenny and we all learned to listen to the Spirit within.

Autism? We had never heard the word. We had never known anyone like this. I was trained to work with children, but I was soon to learn that this would require an entirely different criteria.

Where would we go from here?  Doctors told me she was just a “slow bloomer”. Now how could that be? She had been ahead of the game. We had not idea what to do, but the one thing we were sure of – WE WOULD NEVER GIVE UP!!

We are now on the “Merry-Go-Round” that never stops turning, never slows down. The years ahead now will bring new challenges, new problems, and yes…new solutions. Stay with me as I open the door to a new life with Jenny. It takes time, but it is well worth the wait!

 

___________________________________________________________________________________________-


 CHAPTER 5

A WORLD OF HER OWN

 

As we went into the days ahead, each of us had our own private war inside us. We had never heard of such a disorder. I had faced about every kind of childhood disease; we had fought through viruses, a kidney malfunction with Robin as well as juvenile arthritis. We had watched Paula go from measles to encephalitis resulting in a six day coma. We had faced heart surgeries and injuries. But this? What was this? Now, at this point in time, if a child has autistic symptoms we can label it without too much difficulty. But twenty years ago it was a complete mystery to us. We had never known of anyone with this syndrome, nor had we read about it. It was an unspoken mystery.

 We decided it must be a reaction to something we had done – something incomplete or too traumatic for her to deal with. Each of us contemplated a cause to affect this and one by one we began to seek blame within ourselves.

 For instance, Mommy Robin came to the conclusion that it must have been the automobile accident. She had been hit from the rear by an oncoming car. Her stomach (in the last stages of her pregnancy) hit the steering wheel. Jenny was born with a bruise to her head. “It must have been my fault for having the accident,” she said with a worried expression.

 “I think it had to do with my being gone so long,” I decided. “I had never been away from her before and I should have stayed with her when she was sick.”

 Because Paula had worked in Neurology with patients who had seizures and  brain trauma she was afraid that it was somehow related to the lack of oxygen during Jenny’s difficult birth or the head trauma just prior to birth because sometimes it takes time for this type of trauma to manifest itself.  Or could it have been the terribly high fevers she’d had with this shot and ear infection?  She knew that sometimes the high temps can affect the brain as well.  She hated to imagine it could be something along these lines because there could be so many devastating things that could be the source of the problem.   She began discussing/researching it with the assistance of her associates.

 Uncle Danny was a psychology major. He had studied something about a problem like this, but he couldn’t bring himself to think on it. It came to his mind, then he tossed it aside, not daring to compare Jenny’s problem with that one. Uncle Danny had a graduate degree. He began to dig into whatever he could find that dealt with childhood disorders. The wheels in his brain were constantly turning. It was a puzzle, a challenge. There HAD to be an answer and it might not  be one that meant hope and a future for our little Jenny. There seemed to be a difference in Jenny’s facial features. It was more a flat affect now. Down’s Syndrome was ruled out, but what other disorders could be responsible? One that came to mind was fetal alcohol syndrome. Robin was going through so much at that time. The trauma and bitterness surrounding her marriage, the problems that had developed with her first child as a result of it, and to complicate things she was pregnant. Under these circumstances, having another child was not in her best interest. That was the last straw. With all she was going through could she have reverted to alcohol or drugs during this gestational period? Danny couldn’t and wouldn’t ask her that, but he continued look further into FAS and ruled that out, too. Nothing seemed to fit.  

 As for Granddaddy, he was in denial. Granddaddy’s name was Rex. I was always told that the meaning behind that name was “King”. I know that was the meaning his mother understood when she named him. He was King of denial. He would never allow himself to accept anything he didn’t want to face. He wanted to believe that everything would work out fine and he would often neglect to take matters into hand before they were impossible to deal with. It was just a way he had of protecting himself from undesirable truth.

 Uncle Davy lived in Tennessee. We lived in Arizona. I would call him and relate to him the things that were happening and he would remind me that she was still a very young child and that as time went by she would surprise us all with a comeback. David was one to take the positive road.

 Once we all had inwardly thought about ourselves and the role we might have played in this unbelievable situation and found answers to our questions, we realized that this was not about us. It was about Jenny and her own seclusion. I went to my Bible hoping to find comfort and guidance. The family needed to be spiritually stable in times like these. I randomly opened the Book to Ecclesiastes and my eyes instantly fell upon that first chapter and the ninth verse. It said, “The thing that hath been, it is that which shall be; and that which is done is that which shall be done: and there is no new thing under the sun.” 

Nothing new? Whatever happens has happened before? If so, wouldn’t the particular problem be documented somewhere? Ecclesiastes is not my favorite book, but that day it had a message for me.  That’s when we started our search for knowledge. It became an exhaustive search to uncover the mystery of Jenny. As we would read whatever books we could find, Jenny would play happily in a world of her own. She was content in her solitude as if something within was more amazing than anything without. She would focus on inanimate objects, become obsessed with the twirling of her fingers so close to her eyes and twirling her plate, delighting in the circular movement. When it would finally tumble down and fall flat on the floor she would laugh as though watching it fall was the object of the game.

 One of the first things I read was “The Empty Fortress”, by Bruno Bettelheim. It was given to me by my dear friend, Alice. She had mentioned the problem I was having to someone she knew and they suggested that we read that book. It talked about a syndrome called Autism. It said that Autism is not defined by cause, but rather by a group of associated symptoms and patterns of behavior. Bettelheim also believed that the reason for such withdrawal from society was a result of a cold and abusive environment. The only thing that book did for me was to label this type of behavior. I knew that never in her few months of life had Jenny ever been treated with any emotion but love and she certainly had never been the victim of abuse. This man was blaming the mother or caregivers for her retreat. I soon put that book aside. Alice agreed with me that the reasons that he gave were ridiculous, but that the word Autism might be a good place to start.

 Alice was a registered nurse and a hospital administrator. She was exceptional in her field, but this was not in her expertise. However, she was one to enjoy research and was instrumental in trying to find answers to the questions that seemed so far out of reach. She would suggest reading material and have conversations with others that she would relate to me as often as possible.

 Paula would search the computer and whatever books she could find on the subject of autism and childhood development. Books began to stack up, papers that she would print out from the computer, and we would read until we could read no more. Uncle Danny’s research was endless. We each went on our own quest to find a way to bring our baby back. However, nothing we read or heard seemed to register. Why? Because we would only accept what we could deal with  at the time.

 Autism? We were in denial. Everything we read told us that it was irreversible. It was a problem without a fix. We couldn’t and wouldn’t accept that. There had to be another solution to this mystery. No matter how well it pointed to Jenny, we tried to ignore it and look deeper for something less debilitating.

 I thought back over those fourteen months and the only things that seemed unusual about Jenny was her brilliant mind and the fact that she had to be swaddled to be comfortable. It was as though she was in pain without that blanket wrapped tightly around her. This had happened so suddenly – within 24 hours after her inoculations. That’s when I began to wonder about the shots and the ear infections. Had the ear infections caused deafness? I walked up behind her and clapped my hands behind her head. She didn’t respond. Not even a slight jerk. I stood in front of her and spoke her name. She didn’t look up. So maybe it was that she couldn’t hear us.

 Jenny showed no anticipatory gestures when we approached her or picked her up. Only days before she spoke. Her words were audible. Now she was as mute as the carpet she sat upon. Sometimes I thought she was looking at me, when in truth she was looking through me as though I were invisible.

Rocking, rocking, and rocking, with a smile of contentment. Spinning, focusing on her fingers as though they were precious ornaments before her eyes, flipping them for hours with incredible motion even when we tried to feed her. No longer would she hold her little fork and dump her spaghetti into her mouth upside down. She was busy in her own world. It was a world with walls we couldn’t penetrate, a world that excluded the rest of the human race. And she was at peace there. She was like a sojourner happily traveling an unfamiliar path on some other plateau of the universe. Sometimes I wished I could see into her world – into the fascination of all that must be surrounding her.  If she wouldn’t come into my world, was there a way for me to penetrate those invisible walls around her and make my way into hers?

 





 

 

CHAPTER SIX

MAJOR ADJUSTMENTS




In the months ahead we were busy reading and having family discussions about the new findings that made the diagnosis of autism more probable.  As we studied her behavior, each new discovery also pointed toward the autism spectrum.  Yet, in spite of all the information that suggested autism, none of us were willing to accept it.  I sometimes think that our minds knew, but our hearts would not relate to our negative thoughts.

Eventually we put the books aside and began to get back to the basics of family life, making whatever changes necessary to survive.  It was as though a dark cloud poised over the home like a thunder storm.  Little did we realize that it would eventually become a real twister, tearing into the fabric of our family life, shattering the household with the strength of a Force Five tornado.  Bit by bit, slice by slice, it tore away all of the normalcy we had always known:  all family traditions, our comfort zones, and left us stunned and disillusioned.  I believe the doctors were as baffled as we were.  They would just tell us that she would grow out of it in time.  At times we felt like a small community set apart from the rest of society, waiting for leadership and guidance from somewhere that would teach us how to function reasonably again, as a normal American family.

One of the major issues was her eating habits.  She had always enjoyed her food--she enjoyed nibbling on things.  Now she would eat nothing but baby food, yogurt, and pudding.  Anything with texture was out of the question.  She had already done well feeding herself.  Now she had to be spoon fed.  She never indicated that she was hungry, so we scheduled her meals.  She was always accepting when we put the spoon against her lips.  She would open, allow us to insert the food, close and swallow.  Again, she showed no anticipatory action, like being ready for the next bite.  When the spoon touched her lips she would open.  When the spoon was removed, it could be  finished unless we re-located the spoon to her lips.

We also found that it was important to portion out the amount she should have.  She would open her mouth and take in whatever we gave her without any sign of satisfaction.  Sometimes while eating, she would fix her gaze upon a spot on the wall, a picture, or nothing obvious to the rest of us.  At other times she would twirl her fingers and watch them intently, careful not to lose the rhythm or direction of movement.  At one feeding,  she allowed me to feed her more than she needed, and she spit up the excess amount.  From then on, we measured her portions.  Jenny had no desire for anything outside her own domain.  She seemed to not be able to decipher her need for food, water, or her bottle.  The one connection with her past was her pacifier and its use.  She kept it in her mouth or placed it close beside her.  No one was permitted to touch it under any circumstance without trauma.

One of the most frustrating changes came with her sleep patterns.  She would fall asleep when she could stay awake no longer.  At first it was eighteen to twenty hours without naps.  It eventually stretched into thirty -two to thirty-four hours.  Once she did go to sleep she would awaken within six to eight hours, and then she would begin her bizarre rituals all over again.  

The problem regarding her sleep was that she had no sleep patterns.  She might fall asleep in early morning or late afternoon.  When she slept, we had to grasp the opportunity to sleep ourselves.  While it was our only chance to rest, there were still chores to do and meals to prepare before we could lie down.  I would prepare meals ahead, not knowing when I could be free to cook again.  We always had a meal schedule. Breakfast was  about  8:00 a.m., lunch was  noon, and dinner was 5:00 p.m.  Each time her sleep schedule changed, our entire household’s schedule changed, and adjustments were made.

For instance, if she finally gave in to sleep at noon,  she would sleep until 6:00 or maybe  8:00 p.m.  I would do the daily tasks such as laundry, dishes, vacuum, etc. after she fell asleep,  then try to lie down beside her to catch a quick nap.  I got up when she did.  We built a fortress around my bed so she wouldn't roll off or get out of bed without our knowing it.  When she fell asleep I would put her in my bed.  After I finished my work I would be there beside her so that when she began to stir, she would awaken me.  Thus another day, or should I say another cycle, would begin again.  In this particular instance, breakfast could begin at 8:00 p.m., lunch would then be at midnight, and dinner would be at 5:00 a.m..  Grocery shopping would usually happen between midnight and dinner. She went shopping with us.

There was no way of knowing what time one cycle would begin and end.  Sleep could not be forced.  Medication was not an option.  How long would this madness continue?  As long as she was awake, she was moving, spinning, or twirling.  When sleep came, her eyes would blink, slowly close, and she would slowly topple wherever she was.  Sometimes when I thought she was getting sleepy, I would entice her to sit in her walker where she would always sink down like a wilted rose.  I would feel such relief when her slumber time arrived.  I was tired.  Between keeping the house going, caring for her and her sister, and being sleep deprived, I couldn't help but wonder how long I could endure.  Paula did all she could to help, and when she wasn't working, she would give her attention to the children.  Paula wanted more time with them, however, she had no choice but to work, since I had quit my job in order to care for them.  We really depended upon her paycheck.  Uncle Danny also contributed financially, and found time for the children.  Granddaddy did all he could, but he had been ill with heart disease and genetic spinal disorder for years.  Although he wanted to help, there was a limit as to how much he could accomplish.

Eventually, Jenny developed a sleep cycle that we were forced to adapt to.  Every day for several months she would fall asleep at 1:30 in the afternoon and awaken six to eight hours later.  That regimen made it possible to know when to cook, shop, keep up with housework and pay bills.  These things were impossible to do while she was awake.  I learned very early in this period of Jenny's behavior that you never leave autistic kids alone.  You have to watch them every second because they are so fast.  She had no sense of danger and just didn't know the hazards of her environment.  Now that she was moving about more, all outside doors were kept locked for her safety and our peace of mind. 

This pattern lasted for about six months until she developed another ear infection.  After that there was no set sleep cycle at all: she slept when she needed to – she had no choice.  Her sleep was sporadic, but she was able to stay awake for longer periods.  That's when she began staying up for almost two days without any sleep at all and so, therefore, did I.  If it happened on days that Paula was off, I had some help.  Otherwise, I just had to deal with it.  When she did sleep, it would be for shorter periods of time -- perhaps no more than four to six hour loops.  We were all exhausted.  Paula was working three jobs at the time. Her full-time job was day shift management, and her  part-time jobs were evening and night shifts.  Although she needed to sleep, at times she would give up her opportunity to sleep so that I could get some rest. I was always grateful for that sacrifice.

Jenny finally stopped just twiddling her fingers and staring into space as often, and became hyper-active.  This baby never crawled.  Instead, she hit the floor running. Now her favorite game was to run around the living room, dining room, and kitchen which made a circle for her.  She couldn't run fast enough on her own,  so she would wrap her little fingers around mine and run on her tiptoes,  with me straddled over her, trying not to fall on her, but without causing her to lose momentum.  She would pull anyone into the game who was around at the time.  She and I were the first in line, then, everyone else had to follow.  No one had her resilience.  We thought that she would never stop.  I couldn't imagine how her little legs could move so fast, but everyone had their place in line, always trying to keep up.  If someone got too tired and got out of line, she would pull them back in, grab my fingers, and away she would go again.  Granddaddy was always the one to sit back and watch.  He couldn't run with her, and finally she accepted that.  She didn't see us so much as playmates, or even people, but more as robots that could function and act as instruments that suited her purpose and satisfied her needs at the time.

The idea of teaching and training went out the window for awhile.  We were doing well just trying to survive each day.  We were too busy and much too sleep deprived to think and plan.  It was a time to just do whatever came next.  We were all hanging on, waiting for the next bomb to drop, and believe me, it did.  As I look back at the next year of Jenny's life, I know that there is somebody bigger than you or I.

                № 7

 ___________________________________________________________________

 

 CHAPTER SEVEN

MAJOR ADJUSTMENTS

 


In the months ahead we were busy reading and having family discussions about the new findings that made the diagnosis of autism more probable.  As we studied her behavior, each new discovery also pointed toward the autism spectrum.  Yet, in spite of all the information that suggested autism, none of us were willing to accept it.  I sometimes think that our minds knew, but our hearts would not relate to our negative thoughts.

Eventually we put the books aside and began to get back to the basics of family life, making whatever changes necessary to survive.  It was as though a dark cloud poised over the home like a thunder storm.  Little did we realize that it would eventually become a real twister, tearing into the fabric of our family life, shattering the household with the strength of a Force Five tornado.  Bit by bit, slice by slice, it tore away all of the normalcy we had always known:  all family traditions, our comfort zones, and left us stunned and disillusioned.  I believe the doctors were as baffled as we were.  They would just tell us that she would grow out of it in time.  At times we felt like a small community set apart from the rest of society, waiting for leadership and guidance from somewhere that would teach us how to function reasonably again, as a normal American family.

One of the major issues was her eating habits.  She had always enjoyed her food--she enjoyed nibbling on things.  Now she would eat nothing but baby food, yogurt, and pudding.  Anything with texture was out of the question.  She had already done well feeding herself.  Now she had to be spoon fed.  She never indicated that she was hungry, so we scheduled her meals.  She was always accepting when we put the spoon against her lips.  She would open, allow us to insert the food, close and swallow.  Again, she showed no anticipatory action, like being ready for the next bite.  When the spoon touched her lips she would open.  When the spoon was removed, it could be  finished unless we re-located the spoon to her lips.

We also found that it was important to portion out the amount she should have.  She would open her mouth and take in whatever we gave her without any sign of satisfaction.  Sometimes while eating, she would fix her gaze upon a spot on the wall, a picture, or nothing obvious to the rest of us.  At other times she would twirl her fingers and watch them intently, careful not to lose the rhythm or direction of movement.  At one feeding,  she allowed me to feed her more than she needed, and she spit up the excess amount.  From then on, we measured her portions.  Jenny had no desire for anything outside her own domain.  She seemed to not be able to decipher her need for food, water, or her bottle.  The one connection with her past was her pacifier and its use.  She kept it in her mouth or placed it close beside her.  No one was permitted to touch it under any circumstance without trauma.


One of the most frustrating changes came with her sleep patterns.  She would fall asleep when she could stay awake no longer.  At first it was eighteen to twenty hours without naps.  It eventually stretched into thirty -two to thirty-four hours.  Once she did go to sleep she would awaken within six to eight hours, and then she would begin her bizarre rituals all over again.  

The problem regarding her sleep was that she had no sleep patterns.  She might fall asleep in early morning or late afternoon.  When she slept, we had to grasp the opportunity to sleep ourselves.  While it was our only chance to rest, there were still chores to do and meals to prepare before we could lie down.  I would prepare meals ahead, not knowing when I could be free to cook again.  We always had a meal schedule. Breakfast was  about  8:00 a.m., lunch was  noon, and dinner was 5:00 p.m.  Each time her sleep schedule changed, our entire household’s schedule changed, and adjustments were made.

For instance, if she finally gave in to sleep at noon,  she would sleep until 6:00 or maybe  8:00 p.m.  I would do the daily tasks such as laundry, dishes, vacuum, etc. after she fell asleep,  then try to lie down beside her to catch a quick nap.  I got up when she did.  We built a fortress around my bed so she wouldn't roll off or get out of bed without our knowing it.  When she fell asleep I would put her in my bed.  After I finished my work I would be there beside her so that when she began to stir, she would awaken me.  Thus another day, or should I say another cycle, would begin again.  In this particular instance, breakfast could begin at 8:00 p.m., lunch would then be at midnight, and dinner would be at 5:00 a.m..  Grocery shopping would usually happen between midnight and dinner. She went shopping with us.

There was no way of knowing what time one cycle would begin and end.  Sleep could not be forced.  Medication was not an option.  How long would this madness continue?  As long as she was awake, she was moving, spinning, or twirling.  When sleep came, her eyes would blink, slowly close, and she would slowly topple wherever she was.  Sometimes when I thought she was getting sleepy, I would entice her to sit in her walker where she would always sink down like a wilted rose.  I would feel such relief when her slumber time arrived.  I was tired.  Between keeping the house going, caring for her and her sister, and being sleep deprived, I couldn't help but wonder how long I could endure.  Paula did all she could to help, and when she wasn't working, she would give her attention to the children.  Paula wanted more time with them, however, she had no choice but to work, since I had quit my job in order to care for them.  We really depended upon her paycheck.  Uncle Danny also contributed financially, and found time for the children.  Granddaddy did all he could, but he had been ill with heart disease and genetic spinal disorder for years.  Although he wanted to help, there was a limit as to how much he could accomplish.

Eventually, Jenny developed a sleep cycle that we were forced to adapt to.  Every day for several months she would fall asleep at 1:30 in the afternoon and awaken six to eight hours later.  That regimen made it possible to know when to cook, shop, keep up with housework and pay bills.  These things were impossible to do while she was awake.  I learned very early in this period of Jenny's behavior that you never leave autistic kids alone.  You have to watch them every second because they are so fast.  She had no sense of danger and just didn't know the hazards of her environment.  Now that she was moving about more, all outside doors were kept locked for her safety and our peace of mind. 

This pattern lasted for about six months until she developed another ear infection.  After that there was no set sleep cycle at all: she slept when she needed to – she had no choice.  Her sleep was sporadic, but she was able to stay awake for longer periods.  That's when she began staying up for almost two days without any sleep at all and so, therefore, did I.  If it happened on days that Paula was off, I had some help.  Otherwise, I just had to deal with it.  When she did sleep, it would be for shorter periods of time -- perhaps no more than four to six hour loops.  We were all exhausted.  Paula was working three jobs at the time. Her full-time job was day shift management, and her  part-time jobs were evening and night shifts.  Although she needed to sleep, at times she would give up her opportunity to sleep so that I could get some rest. I was always grateful for that sacrifice.

Jenny finally stopped just twiddling her fingers and staring into space as often, and became hyper-active.  This baby never crawled.  Instead, she hit the floor running. Now her favorite game was to run around the living room, dining room, and kitchen which made a circle for her.  She couldn't run fast enough on her own,  so she would wrap her little fingers around mine and run on her tiptoes,  with me straddled over her, trying not to fall on her, but without causing her to lose momentum.  She would pull anyone into the game who was around at the time.  She and I were the first in line, then, everyone else had to follow.  No one had her resilience.  We thought that she would never stop.  I couldn't imagine how her little legs could move so fast, but everyone had their place in line, always trying to keep up.  If someone got too tired and got out of line, she would pull them back in, grab my fingers, and away she would go again.  Granddaddy was always the one to sit back and watch.  He couldn't run with her, and finally she accepted that.  She didn't see us so much as playmates, or even people, but more as robots that could function and act as instruments that suited her purpose and satisfied her needs at the time.

The idea of teaching and training went out the window for awhile.  We were doing well just trying to survive each day.  We were too busy and much too sleep deprived to think and plan.  It was a time to just do whatever came next.  We were all hanging on, waiting for the next bomb to drop, and believe me, it did.  As I look back at the next year of Jenny's life, I know that there is somebody bigger than you or I.

 

___________________________________________                                                             

CHAPTER 8 

NEW CHALLENGES

 

As I said, we were waiting for the next bomb to drop – and it did!  Jenny became an explorer.  Some activity was taking place in that alien type brain of hers.  We were able to see that she definitely was not retarded, but rather she was mentally keen, quick, and intelligent.  We also learned that she had to be in control of her own personal environment.  In her mind, she had no where else to go.  She hadn’t accepted us as people yet, so how could she have developed a sense of trust?

 

One of the new things that Jenny discovered was the big white bowl of water in the bathroom of the master bedroom.  I was in the bathroom combing my hair when she first became aware of it.  I turned to see her staring at the toilet.  She was just looking at it as if to say, “What is that thing?”  She looked at it for the longest time and as I walked out of the bathroom into the bedroom I reached for her hand with the idea of taking her with me. Without changing expression, she remained in place, just staring at the toilet as though it was something spectacular.  I went into the bedroom to make the beds and soon I heard it – the sound that would make me crazy and cost us money in the days to come.  She had learned to flush the toilet.

 

I quickly went to her and instead of stopping her I just stood back and watched.  She was spellbound.  The swirling water was fascinating.  She would pull that shiny handle and watch the water swirl and giggle.  I was so excited to hear the laughter!  I think I was finding more delight in this than she was.  Now she was no longer mute.  Jenny was making sounds!  When the water would stop she would pull the handle again.  It didn’t take her long to realize that she had to wait until the toilet noise stopped before she would get the results she wanted again.

 

Then a thought suddenly came to her.  She knew where there was another toy just like that one.  She ran to the other bathroom and the expression on her face when it worked just like the other was one of sheer delight.  Now she could flush one and while it was filling up she could run to the other and it would be ready for her.  She realized that she had two whirlpool toys to play with.  I knew it would create a big rise in the water bill, but I was just too happy to see that she was discovering new things and actually thinking! This kid had a brain that really worked!  I was sure she would soon get bored and move to something else and she did just that.  She learned that the swirling water could carry things away. Whoosh! And anything she dropped in it would disappear. 

 

One afternoon while she was playing with the toilet I rushed into the kitchen to get a drink of water.  I hurried, because I was alone – the only person there to watch Jenny.  We had a hard and fast rule – Never leave Jenny alone.  When I returned to the bathroom she was standing in a pool of water.  She had flushed something, I wasn’t sure what, down the toilet and it stuck in the trap.  Before we made a point of closing the bathrooms so she couldn’t get in, she had flushed blocks, doll shoes, hair barrettes, a toothbrush and even one of Granddaddy’s pipes. The pipe didn’t make it all the way, but she had fun watching it whirl around in the water.  Granddaddy spent more time taking things out of the traps until we were finally forced to call a plumber for both toilets.  Closing the bathroom doors solved the problem unless someone forgot to close the bathroom door.  When that happened, she seemed to know it.  It was like she had radar built into her brain.  “Door open!  GO!!”

 

This little girl could find so many things to do that it was difficult to keep up with her.  She loved putting things in the register vents on the floor, then bang on them until we took the register cover off and retrieved the item.  It could be a little piece of paper or a Barbie shoe.  It didn’t matter.  She had to get it out of there.

 

Then she discovered the doorbell.  When we locked the door so she couldn’t stand on her self-made ladder to ring it constantly, she would just move on to door slamming.  She would open the door as wide as it would go, then slam it shut.  This could go on forever, making us all crazy, but she really delighted in it for some reason unknown to us.

 

“She needs discipline,” I thought. Of course spanking was out.  I had to be careful with discipline, because these antics of hers were just signs that she was thinking and making discoveries of her own environment.  To be too firm could send her back to just twiddling her fingers.  I decided to try “time out”.  I would put her on her little Fisher Price chair and say, “Sit, Jenny.  Stay.”  I felt like I was trying to train a puppy.  She would just slide off the chair and return to the door.  “She just didn’t understand. I’ll try again.  After a few times she’ll get the message,” I thought.  We could have done the “time out” routine for the rest of the day and it wouldn’t have mattered.  She was not being arrogant or difficult.  She wasn’t being disobedient.  She was just doing what came natural to her.  She had no idea what I was trying to accomplish.  My words meant nothing to her and she must have thought I was playing a game.  Usually a child can tell by the look on your face or your body language.  She never looked at me.  She couldn’t see the expression on my face if she never looked at me.  To Jenny I was just uttering sounds that meant nothing.

 

Jenny didn’t cry.  Even with her ear infections and fever, she didn’t cry.  She would pacify her pain by twirling her fingers as she either watched them, take her pinky finger and rub the pacifier with it loosely holding it with her other fingers, bang on something with her little hammer, or just stare into space as if she were blind.

 

Soon she discovered the light switches.  She would flip them off and on repeatedly until it was maddening. She would sometimes leave a light on for a few minutes and stare at it.  She loved to flip it off and on, delighting in the flashing brightness of it. If I took her away from one switch, she would just find another.  Once she discovered all of the switches she would make her rounds.  She would turn all of them on and then go back and turn all of them off.  One night she amazed me.  She had turned off the last switch and the house was very dark.  I got up to find a switch, running my hand over the wall to find it and suddenly a bedroom light came on, then another, then the bathroom lights and so on.  The thing that was so surprising was how did she get from the kitchen switch where she was in the darkness, all the way to the bedroom that quickly?  Again, it was like she had built-in radar or something.

 

She didn’t like to be touched by strangers.  She wasn’t happy at this point about being handled very much by anyone; however she did allow her close family members to pick her up.  She would be limp in our arms, waiting for us to put her down. I believe that loving touch is so important, especially to the autistic child.  Even though they may not seem to respond, they need those endorphins that are released when hugged as much as they need anything.

 

Jenny could move through a crowd of people and somehow she managed to be so close you would think you couldn’t get a hair between them, but she never brushed against anyone or accidentally touched anything or anyone around her.  She could run through a tight area so fast, but never bump into anything.  This was one of the things that always came to our attention.  She was never awkward or clumsy.  She wasn’t one to fall, bump her head, or trip.  She ran on her tip toes at a speed that was extraordinary.  It was as though she had antennas somewhere on her body.

 

Jenny found the cupboards and began taking things out and arranging them on the floor around her.  After she had what looked to her to be a good arrangement of all that was in the cupboard, she would put it all back and begin again.  Each time she would put the articles from the cupboard in the same order as she lined them up on the kitchen floor.  She had a fantastic memory.  That was a good thing.  She could recall the line-up and no matter how often she did this, everything would end up in the same order.

 

Needless to say, we put locks on the cupboard doors.  That’s when she became a real climber.  She noticed the ones above and made every effort to get to them.  She accomplished it a time or two, then we made sure no one turned their back to her while in the kitchen.  She was so quick and so good at climbing that she could get where she wanted to go in a flash.  She could have won an award for the World’s Best Climber for Toddlers.  If she couldn’t climb it, she built a ladder.  She was determined and strong-willed.  She was not problematic, just curious.   She was always investigating each new thing that caught her eye.

 

This was good!  Although it kept us constantly on our toes, it told us that this change, this need to explore, was a remarkable one.  It told us how capable and alert she really was.  We had faced many challenges, but we were certain there were more to come.  Throughout these days we kept Reinhold Niebuhr’s Serenity Prayer where everyone could see it and it took on new meaning for all of us.

 

God grant me the serenity

To accept the things I cannot change;

Courage to change the things I can;

And wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

As it is, not as I would have it;

Trusting that He will make all things right

If I surrender to His Will;

So that I may be reasonably happy in this life

And supremely happy with Him

Forever and ever in the next.

 

·       We needed serenity, strength, & wisdom,

·       We needed the ability to take life a day at a time, 

·       We needed to accept  life as we were

    living it,

·       We needed faith that God would see us through whatever happens in this life

·       And we needed to find happiness with each and every day, regardless of the circumstances.  

 

With these concepts in mind, how could we possibly fail?  We were not alone and once that became a constant with us, we were able to move on to new horizons.

 

__________________________________________________________________________

 CHAPTER NINE

 ENCHANTMENT IN THE SAND                                                                                                                        

 

 

When I look back at the memories of the past I wonder at the love and patience that was so freely and cheerfully given to Jenny.  Why did we not expect of her what we would have  expected of any other child? Because she didn’t make eye contact?  I think there may be autistic children somewhere who are being unjustly punished for doing things or even not doing things expected of them.  We understood that the little girl we were living with now was not the one we had left.  It is possible that some have no idea what is happening, but the undeniable  change in the child is extremely obvious.  Care must be taken to have patience, because frustration with this syndrome reaches its highest peak at times.  I use to try to hum a tune, tune out what she was doing, or just step aside for a short time.  I couldn’t walk away, because she could not be left alone.  I would just step back and pray for guidance.

 

One of the things that really tested my patience was the rejection of her potty.  She had a Fisher Price potty that had served us well.   Jenny was completely potty trained at twelve months old.  For her first birthday she received some of the cutest frilly panties and she just adored them.  We were fortunate that she trained so early, but I wasn’t surprised.  She was so bright and she had such a desire to please.  After all, Uncle Davy was through with diapers at ten months of age.  That didn’t surprise me either.  Uncle Davy was easy to reason with and always wanted to please.  Jenny had the same loving, compliant, and sweet spirit David had.  Autism couldn’t have happened to a more beautiful and lovable child.

 

Now Jenny’s potty days were over for awhile.  At the very beginning I let her wear her lacy panties and I soon realized that it was a mistake. Although she   had always been so particular about keeping immaculately clean, this didn’t seem to effect her. She didn’t  notice  the water running  down her legs and onto the floor.  Watching her as close as we did, never taking our eyes off her, probably prevented  her from slipping and falling in the water.   

 

One day she had a bowel movement on the go as if she didn’t even notice it.  Then on her way back around, she  stepped in it and laughed as it squished between her toes.  I must admit I was furious.  “This is not going to happen again,”  I said.  “Jenny, stop it!”  I was yelling at her.  I wanted to pick her up and spank her, but since I knew that would only complicate things,  I simply took her into the bathroom, washed her little toes and feet, and then cleaned up the mess.  “Why is this happening?”  I wondered.  “What is happening to this kid?  And what is happening to me that I got so angry and yelled at her?”  My yelling at her didn’t seem to bother her at all.  She never changed expression, but continued to do what she wanted, anyway.

 

Then an idea struck me.  I thought about how she giggled when the stuff squished between her toes.  Very few things delighted Jenny to the point of laughter.  I got a large kettle of water and went to the back yard.  It  had a large, possibly an eighth of an acre, area of sand.  The sand was deep as if put there for a child’s little beach area.  I poured water onto a section of the sand, took her outside and set her feet into the wet sand.  It squished between her little toes and the look on her face was the happiest expression I had seen since the first toilet flush.  She stayed there that day until I finally had to carry her in and lock the patio door.  Then she stood at the patio window, waiting for an opportunity to get into the sand again. A new and wonderful sensation for her, something to create a need and want that we found to be stimulating.  We were always looking for ways to stimulate her mind, causing her to think, to reach out, and to want.  Anything that was close to normal behavior was so meaningful.

 

The next big issue was getting her back into diapers.  She was not going to have it.  She didn’t fight against them or try to keep us from putting them on, because she knew she could take them off again.  We would put them on, she would simply pull at the tabs and let them fall.  No diapers for Jenny.  The first time I tried the diaper she removed it without much effort and ran to her panty drawer.  This time I was a step ahead of her. I had removed them and hidden them away.  When she opened the drawer and saw that it was empty she didn’t seem to mind.  Who needs panties anyway?  She just ran about the house bare.  It was a constant.  I would put a diaper on and she would take it off.  Finally, I decided that panties were better than nothing at all, so I retrieved them and returned them to the drawer.

 

Paula went to work a few days later and could think of nothing but Jenny’s diaper problem.  There had to be a solution.  She believed that there is a solution to every problem.  The difficulty is always in finding it.  After a lot of deep thought she came up with an idea and she brought it home the next morning.

 

“Jenny won’t wear her diapers because they are different from what she’s used to and she’s being forced to accept them.  We’ve all learned that she has to be in control of her life and surroundings,” she said.  Then she smiled and said, “I think I’ve got it.  I think I know how to solve the problem.”

 

She went into Jenny’s room and picked up one of her larger dolls.  Then she went to the shelf and got a diaper.  “Jenny,”  she called.  “Jenny, will you come and help Paula?”  I knew Jenny wouldn’t come – she didn’t respond when we called her.  Paula knew that, too, but we always kept trying.  So Paula went to Jenny who was sitting on the floor lining up some crayons.  Paula began to put the diaper on the doll, taking Jenny’s hand, encouraging her to lift the sticky tabs.  It took patience on Paula’s part, but that was something we developed plenty of.  She then proceeded to put the diaper on the doll.  Jenny turned to walk away and Paula took her hand and guided her back on the scene.  Then, with the tabs open, Paula put her hand over Jenny’s and helped her to close the tabs on the diaper.  Jenny looked at the doll for a few seconds, then picked it up by the leg and ran down the hall with it.

 

That night at bedtime Paula decided to see if her idea worked.  She began dressing her for bed.  She put on her pajama top, then reached for the diaper.  As I said, Jenny didn’t fight the diaper idea, she just took them off as soon as we put them on.  This time, Paula just slid the diaper between Jenny’s legs and coaxed her to open the tabs and stick them to the diaper.  That was an (Ah hah!)  moment.   Jenny had a diaper on because SHE did it.  She felt she had control of the situation.  It was her diaper, she put it on, and that made it okay.  What a relief it was to know that even though she would have to potty train again, we could do it when she was ready and she had protection until that time came.

 

That night, as I pondered on the day and wrote in Jenny’s Journal, I felt a sense of relief.  Two remarkable things had happened and all in one day’s time.  She had found something of interest that caused her to look forward to that remarkable back yard that looked like City Park, and she had accepted the idea of wearing diapers again.  Those entries made the day worthwhile.

                                                                                 № 10

 

ON THE OTHER SIDE OF THE MIRROR

 

Feeding Jenny these days was a real walkabout.  She would use her highchair at will, but to expect this child with perpetual motion to sit still long enough to eat was impossible.  I would put her tray as close to her tummy as it would go, but she would either climb up or slide out.  I tried tying her in loosely, but she would work out of the silk scarf I had used to tie her in.  It was easier to follow her around than to keep putting her back in the chair.

 

I had just finished feeding her lunch when she picked up that doll with the diaper and headed for her room.  Of course, I followed her, trying to keep the pace.  How those little short legs could move!  As she walked into the room she noticed the mirror.  It had always been there, but she had avoided it.  For some reason, it caught her eye.  She walked closer to it and looked into it for several minutes and finally discovered someone she could identify with.  Herself!  She raised her right hand and touched the hand in the mirror.  Then she did the same with her left hand.  She smiled.  Her friend in the mirror smiled back at her.  Miraculously, the person in the mirror made no attempt to do anything she didn’t initiate.  I think that was the key to her ability to identify with herself.  She put her nose to the mirror and the image in the mirror did the same with her.  Finally, she sat down and matched feet with her new friend.  Jenny had a friend on the other side of the mirror.  I don’t believe she realized that it was herself that she saw. 

 

Jenny had dropped her doll in her haste to the mirror.  She turned from the mirror and went to pick up her doll, took it to her new friend and held it up as if to show it to her.  She then hugged her doll and the image in the mirror did the same.  She got closer to the mirror again and put her lips to the lips of her image.  From then on and through the years, she has seemed to communicate in one way or another to her image, whether in play or by making sounds.  She may hear only one sound, but the person in the mirror is moving her lips and making the same gestures.  Even to this day when things are confusing or she is not feeling well she will repeat over and over again, one particular sentence: “On the other side of the mirror.”

 

Jenny’s image of herself was like a paper doll image.  She saw only the front of her clothing; she could see her face now and the front of her hair.  I got a hand held mirror and tried to show her the curls I had so carefully fashioned for her and it was annoying to her.  It was nothing but a head.  Later, I was able to use another full length mirror and without making an issue of it, positioned it so that when she looked in the mirror at her new friend, she could see the back of herself.  That seemed to register.  She looked down at her dress, then, looking in the opposite mirror she reached behind her and touched her back.  Instead of seeing just the front of her feet and her toes, she was able to see her heels.  She took both hands and felt her hair.  It was like someone blind finally having sight.  We considered this our most significant breakthrough to date.

 

There were full length mirrors all over the house, one in each bedroom, each bathroom, and one large mirror in the foyer.  She ignored all but her own.  It was as though her only friend could be found in only one place…her room.

 

I tried several times to interest her in crayons and coloring book.  I knew she wasn’t likely to do much with it, but I thought I would try.  She did enjoy TV and the things that seemed to catch her attention were the Disney characters.  She would stop at times and watch for quite a while.  I got Disney coloring books for her, thinking they might catch her attention.  Instead, she would ignore the books and line up the crayons across the table.  That became a game for a while.  She would always line them up in exactly the same order, no matter how I put them back in the box.

 

After the wet sand issue, I was able to get her to go outside into the back yard.  I would always let her see me putting water in the sand so that she could enjoy the squishing sensation as before.  She would run to it and jump into it with both feet at the same time.  There were so many things for her to do out there and I kept hoping she would take advantage of some of those toys.  There was a Little Tyke house,  a swing set, complete with everything she could want, a merry-go-round, a see-saw, monkey bars…everything on the market for a play yard was there and all she could think about was the wet sand between her toes.  Perhaps as time went by she would tire of the sand and indulge in some of the other things available to her.  As for now, it was just a thrill to hear her laughter.  It reminded me of the days before when her laughter was contagious, causing everyone around her to laugh with her.

 

But for today she had crossed another bridge to where she needed to go.  There would be many more ahead of her.  A step at a time may not be the ideal, but all we could hope for was that after one step she would take another until she would finally be where she needed to be.  Our baby Jenny as she was would never be the same.  She would grow and hopefully change, but isn’t that the way it is with all of us?  We never stay the same.  We can never go back to where we were, but, rather move on toward the unknown future – just as Jenny was doing, but at a more rapid speed.  We couldn’t know what lay ahead.  All we could do was just what we are doing today…taking it a day at a time and being grateful for the day we were given.

 

______________________________________________________________________________________________-·  

CHAPTER 10·         

 ON THE OTHER SIDE OF THE MIRROR

 

Feeding Jenny these days was a real walkabout.  She would use her highchair at will, but to expect this child with perpetual motion to sit still long enough to eat was impossible.  I would put her tray as close to her tummy as it would go, but she would either climb up or slide out.  I tried tying her in loosely, but she would work out of the silk scarf I had used to tie her in.  It was easier to follow her around than to keep putting her back in the chair.

 

I had just finished feeding her lunch when she picked up that doll with the diaper and headed for her room.  Of course, I followed her, trying to keep the pace.  How those little short legs could move!  As she walked into the room she noticed the mirror.  It had always been there, but she had avoided it.  For some reason, it caught her eye.  She walked closer to it and looked into it for several minutes and finally discovered someone she could identify with.  Herself!  She raised her right hand and touched the hand in the mirror.  Then she did the same with her left hand.  She smiled.  Her friend in the mirror smiled back at her.  Miraculously, the person in the mirror made no attempt to do anything she didn’t initiate.  I think that was the key to her ability to identify with herself.  She put her nose to the mirror and the image in the mirror did the same with her.  Finally, she sat down and matched feet with her new friend.  Jenny had a friend on the other side of the mirror.  I don’t believe she realized that it was herself that she saw. 

 

Jenny had dropped her doll in her haste to the mirror.  She turned from the mirror and went to pick up her doll, took it to her new friend and held it up as if to show it to her.  She then hugged her doll and the image in the mirror did the same.  She got closer to the mirror again and put her lips to the lips of her image.  From then on and through the years, she has seemed to communicate in one way or another to her image, whether in play or by making sounds.  She may hear only one sound, but the person in the mirror is moving her lips and making the same gestures.  Even to this day when things are confusing or she is not feeling well she will repeat over and over again, one particular sentence: “On the other side of the mirror.”

 

Jenny’s image of herself was like a paper doll image.  She saw only the front of her clothing; she could see her face now and the front of her hair.  I got a hand held mirror and tried to show her the curls I had so carefully fashioned for her and it was annoying to her.  It was nothing but a head.  Later, I was able to use another full length mirror and without making an issue of it, positioned it so that when she looked in the mirror at her new friend, she could see the back of herself.  That seemed to register.  She looked down at her dress, then, looking in the opposite mirror she reached behind her and touched her back.  Instead of seeing just the front of her feet and her toes, she was able to see her heels.  She took both hands and felt her hair.  It was like someone blind finally having sight.  We considered this our most significant breakthrough to date.

 

There were full length mirrors all over the house, one in each bedroom, each bathroom, and one large mirror in the foyer.  She ignored all but her own.  It was as though her only friend could be found in only one place…her room.

 

I tried several times to interest her in crayons and coloring book.  I knew she wasn’t likely to do much with it, but I thought I would try.  She did enjoy TV and the things that seemed to catch her attention were the Disney characters.  She would stop at times and watch for quite a while.  I got Disney coloring books for her, thinking they might catch her attention.  Instead, she would ignore the books and line up the crayons across the table.  That became a game for a while.  She would always line them up in exactly the same order, no matter how I put them back in the box.

 

After the wet sand issue, I was able to get her to go outside into the back yard.  I would always let her see me putting water in the sand so that she could enjoy the squishing sensation as before.  She would run to it and jump into it with both feet at the same time.  There were so many things for her to do out there and I kept hoping she would take advantage of some of those toys.  There was a Little Tyke house,  a swing set, complete with everything she could want, a merry-go-round, a see-saw, monkey bars…everything on the market for a play yard was there and all she could think about was the wet sand between her toes.  Perhaps as time went by she would tire of the sand and indulge in some of the other things available to her.  As for now, it was just a thrill to hear her laughter.  It reminded me of the days before when her laughter was contagious, causing everyone around her to laugh with her.

 

But for today she had crossed another bridge to where she needed to go.  There would be many more ahead of her.  A step at a time may not be the ideal, but all we could hope for was that after one step she would take another until she would finally be where she needed to be.  Our baby Jenny as she was would never be the same.  She would grow and hopefully change, but isn’t that the way it is with all of us?  We never stay the same.  We can never go back to where we were, but, rather move on toward the unknown future – just as Jenny was doing, but at a more rapid speed.  We couldn’t know what lay ahead.  All we could do was just what we are doing today…taking it a day at a time and being grateful for the day we were given.

 

___________________________________________________________________________--·

CHAPTER 11

 

JENNY AT CHRISTMAS

 

Christmas would be a lot different this year, but we planned to make it a special one.  Uncle Danny and I took the kids shopping, hoping to see a gleam in their eyes when they noticed something special.  What kind of gift do you give to children who have almost everything?  Their clothing was either custom made or purchased from the best department stores.  They had every new toy that came out that was safe and applicable to their age group.  These kids had it all.

 

While we were shopping, Jenny’s eyes fell upon a red electric car.  I believe that this was a new item, one that had just been introduced that year and it was very expensive.  She went to it, touched it with her fingers and then put both hands on the steering wheel.   As I have said several times, Jenny didn’t show “wants”.  She just did what she wanted to do with whatever was available.  She didn’t even ask for water or food.  Now, here she was looking longingly at that red car.  I picked her up and tried to put her into it, but she wouldn’t allow me to do that.

 

“She couldn’t even reach the pedals on that thing,” I said.

 

“But she could grow into it,” was Uncle Danny’s answer.

 

“But she probably wouldn’t even bother with it,” I declared.

 

“Someday she might as time goes by,” was his answer.

 

I could see that he was determined.  Jenny would have a red electric car for Christmas this year.  She and I stayed there beside the car for quite a while.  Uncle Danny looked for a clerk to help him find an unopened box containing that red car.  He knew it must be red.  She would remember what she had longed for on Christmas Day.  He found a beautiful pink Barbie car for her sister.

 

We returned home with a new artificial tree.  We had to use artificial trees because Paula, Mommy Robin, and the children were all allergic to pine.  After dinner we had a “Decorate the Tree” party.  We didn’t use anything breakable, because at this time Jenny had an obsession with throwing things.  If we didn’t want her to throw something, we kept it out of her reach. 

 

“She’s going to pitch for the Dodgers one of these days,” Uncle Danny would say with a chuckle.

 

“If she pitches for anyone it will be the Yankees,” would always be Granddaddy’s return.

 

People thought we were spoiling her.  No, we weren’t spoiling her; we were trying to understand her.  It was okay to be different, but it wasn’t okay to be constantly misunderstood.  Here was a bright, intelligent little girl, trying to communicate with a world that was so unfamiliar to her.  All that she had learned before didn’t matter anymore.  This was the beginning of a new life, new concepts, and new experiences.

 

Paula was always responsible for supervising the decorating of the tree.  She carefully arranged the lights around the branches, plugged them in, stood back and inspected her work, then rearranged them to get them distributed just right.  When she turned on the lights Jenny was in awe.  “Lights and no switch to turn them on and off?”, Paula was sure went through Jenny’s ever inquisitive little mind.  What fun it would have been to turn these lights off and on like she did the rest of the lights in the house.  Paula had been careful to plug them in when Jenny wasn’t looking behind a shelf unnoticed. She knew that if Jenny knew how the lights worked she would play with the plug because she loved turning lights on and off.   She watched them for a little while, and then reached out to touch them, one after another.  Paula waited, giving her time to enjoy the placement of the various colored lights, then she began to swirl the garland around the tree.  A small piece that had broken off fell to the floor and Jenny picked it up and put it around her neck like a necklace and began running about.  She seemed to enjoy dancing about with this “necklace” on as much as she had observing the beautiful lights.

 

“Jenny!”  Paula said in an elated tone.  “Come!  See the balls that go on the tree.”

 

This was Jenny’s second Christmas, but it might as well have been her first.  If she remembered anything from last year when she was only nine months old, she indicated no recall. 

 

Paula had taken all the unbreakable ornaments and laid them out on the floor so that Jenny could see all of the bright colors.  Instead of typical hooks used for hanging ornaments on the tree, Paula had taken pieces of yarn and threaded through each ornament, making sure that the yarn was long enough for Jenny to be able to handle it.  As I’ve mentioned before, Jenny’s fine motor skills were not yet able to handle fine string like thread, etc.  Jenny went straight to the bulbs and started lining them up on the floor.  One red, then white, then green, then yellow, and so on until she had every color. She then started another row. The Christmas balls were Styrofoam balls covered with different colors of very fine thread.  Jenny loved the vibrant colors.

 

“See, Jenny?”  Paula said.  “We will put them on the tree.”  She began picking them up and putting them on the tree and Jenny followed along behind and lifted them off, putting them all back in line again.  We ended up having bulbs on the top of the tree, but none on the bottom.  Those would remain lined up on the floor throughout the holiday season.

 

The Christmas gifts were opened at 3:00 a.m. that Christmas.  Breakfast was at 4:30 a.m. One of the gifts Jenny received was a drum set and a complete set of brass instruments.  She loved music and at the time I was listening to big band music.  She would stop whatever she was doing at times and listen intently.  It seemed to reach to her soul.  She also enjoyed watching people with the drums.  She began trying to imitate them by using wooden spoons on a large kettle.  She then used different objects to create different sounds.  We felt that by providing these instruments we would encourage her to create music of her own.  She seemed pleased as she took each instrument from the case and examined it.  Uncle Danny reached for the clarinet to show her how it worked.  She pulled back and began replacing each instrument into its designated slot.  I knew then that she was claiming it as a treasure of her own.  I learned soon after that it wasn’t necessary to teach her how to play them.  Somehow, she already knew.  One of her favorites was an electronic violin that actually played notes as she moved the bow across it.  It became increasingly more apparent as time passed how much music would influence our ability to communicate with our darling Jenny.

 

By dawn, we had the girls dressed and ready to play outside.  This time I did not pour water in the sand.  Instead, we took the red car into the yard and tried to get Jenny to climb in.  She refused at first, so I took advantage of being little, got in the car and drove it around that big back yard with her in my lap.   Eventually, I think she connected riding in the car in front of me with me straddled behind her, with her running game.  From then on, I rode behind her and she and I both had our hands on the wheel. 

 

Finally, Jenny was ready to explore her territory.  She liked the monkey bars and enjoyed the swing.  She would never sit on the swing, she always had to stand.  She would get on the Merry Go Round and that was certainly tiring for us.  When Paula or Uncle Danny was there, it was okay.  But when I was alone, I thought I would collapse before she decided to change to a different piece of equipment.  We all know about those Merry Go Rounds.  One foot on the platform and the other on the ground, running and pushing until the thing got up to speed.  That seemed to go on forever.

 

She loved the slide, too.  The problem was that she would not slide down on her bottom.  She had to slide on her stomach.  She got blisters on her hands before we realized what was happening.

 

She was like a trained acrobat on the monkey bars.  Actually, we shouldn’t have had them.  They were just part of the equipment.  Jenny had no sense of fear.  She would jump off a building if we weren’t watching.  She didn’t understand about not running out into traffic.  She was afraid of nothing.

 

Her real fascination of Christmas was the nativity scene.  The one we had was very valuable, so we decided to buy a small unbreakable one.  It was truly beautiful.    She carried those figures around all year long and placed them in different areas of the house at different times.  Even now, at twenty years of age, she still keeps them where she can enjoy seeing them throughout the year.  Christmas to Jenny is never a season.  It is every day.  We didn’t put the colorful balls away, but allowed her to keep them out and to play with them.  She played with them until after a while they began to fall apart.

 

She received several gifts that Christmas and we learned an important lesson that year.  Don’t give an autistic child a stack of presents to open.  That is too much for them to handle.  After that we would count her gifts and give her one each day, saving the best one for Christmas day.

 

We had dinner at a most unusual time, but that was okay.  We talked over dinner about the baby steps Jenny had taken that day.  We felt we were progressing toward other very important things.