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
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.
“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.
THE TRIP
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.”
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.
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 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 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.”
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.
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.
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.
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
For instance, if she
finally gave in to sleep at
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
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
___________________________________________________________________
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
For instance, if she
finally gave in to sleep at
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
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.
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.
__________________________________________________________________________
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
№ 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·
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
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.