Finding Holland continued (1991 - 2005)

1991 - 2005

"Finding Holland"

My broken dreams vanished, as new and beautiful hopes and dreams came in to view. 

So as I contemplated on the questions and desires I had for Joshua’s life when he was born,

I realized that the questions had stayed the same, but the answers had changed.

If one looked outwardly at our family situation, there would seem to be more burdens than blessings.  Joshua was the oldest of five siblings.  At the time his youngest brother was born, I had 3 children in diapers since at age 12, Joshua was still not toilet trained.  There was much sacrifice, little sleep and many tears shed during this time.

The hardships and frustrations abounded with aggressive outbursts, hitting siblings throughout the day, countless items thrown over the fence, out the window, down the toilet, etc. and every family activity being disrupted in some way.  Joshua’s siblings could not watch TV, play Nintendo or do homework without some type of interruption or outburst from Joshua.  We had very few normal family events such as a meal, or family home evening or family prayer without some kind of problem from the tantrums, the hitting or the throwing.  But it was what happened between these behaviors that became the real celebration of Joshua.  His skinny body was so full of love, we learned to not focus on his autistic behaviors, and instead celebrate and joy in the beautiful young man Joshua was inside with his overflowing love and interest and affection for the world around him.  

There was a scripture in the New Testament which read:  “Come unto me, all ye that labour and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.  For my yoke is easy, and my burden is light.”  (Matthew 11:28-30.)

I took this scripture to heart, and I learned more about Jesus Christ, and what this scripture could mean to me.  I learned and felt of the love Jesus Christ had for Joshua, and for me, and this brought rest to my soul.  The physical burden of caring for Joshua did not go away, but the capacity and strength to do so was increased.  My burden did become light through the atonement of Jesus Christ.

Another scripture that literally carried me through the physical strength required of me is found in The Book of Mormon.  It reads: “And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions. . . the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.”  (Mosiah 24:14-15.) 

Joshua required daily physical care through self-help skills (diaper changes, bathing and dressing), along with physical strength needed to lift and carry him after behaviors and seizures.  Many times I would need to carry him on my back to get him from one place to another.  I was thankful he was skinny, but since he grew to be 6 feet tall, this was not always an easy task.  When I read the promise of this scripture that I would not “feel them upon” my back this became true in that carrying Joshua on my back was no longer a burden, and the strength given to me by Heavenly Father gave me the ability to literally carry Joshua on my back with much joy and gratitude in my heart, for a very special young man with a huge and loving heart. 

As I learned to rely and focus more on the strength and love that was being offered to me by a loving Heavenly Father, I was thankful for the patience He had shown me, as I had not seen Joshua for who he could truly become.  I became more and more aware of His love, and the love of our Savior, Jesus Christ for Joshua and for me.  I knew that my strength was not sufficient enough to give Joshua all he needed in this life.  I placed my trust and faith in Christ’s atonement to give all I had for Joshua, and watched in wonder as the rest of Joshua’s needs (physically, spiritually and emotionally) were met by sacrifice and love given throughout his life by loving hands of family, friends and strangers.  Henry B. Eyring, stated “We need strength beyond ourselves to keep the commandments in whatever circumstance life brings to us.”  (Henry B. Eyring, Ensign, May 2004).  I was given the gift of that strength every day.

There is also a scripture in the Pearl of Great Price that reads: “And we will prove them herewith, to see if they will do all things whatsoever the Lord their God shall command them.”  (Abraham 3:25.)

This was an extremely difficult task and journey to raise a child with disabilities.  I learned throughout this journey that this was a blessing and a privilege and my Heavenly Father expected me to make sure Joshua’s life was full of happiness and joy, through accomplishment and experiences, and through the love of the world around him.  There was no doubt that I needed strength beyond myself to accomplish this.  I am thankful every day for the sacrifice and strength of others that allowed me to accomplish this very special assignment.  There were many things I desired for Joshua throughout his life, but the things I desired the most for Joshua was that he would know and feel he was loved and to have a happy life.  People gave him that happiness, that love and the joy which filled him with purpose and importance.

My journey with Joshua, that had already been filled with more beauty than I had realized, now became an even more joyous adventure, day by day.  Although extremely difficult, heart-wrenching and exhausting, my life with Joshua became one of unity, joy and purpose.  I depended daily on the strength and love from above, along with the strength, sacrifice and love from many family members, friends and strangers whose loving hands lifted me, bringing me renewed strength and deep gratitude and joy.

My broken dreams vanished, as new and beautiful hopes and dreams came in to view.  So as I contemplated on the questions and desires I had for Joshua’s life when he was born, I realized that the questions had stayed the same, but the answers had changed.

1st Annual World Autism Day - A Slice of Pure Heaven

1st annual World Autism Day -- "A Slice of Pure Heaven"
One Mother's Story -- CNN Spotlights Joshua

April 2, 2008 --

My tears were full of joy and sorrow, gratitude and wonder, and as they streamed down my cheeks,
completely full of a mother's love for her precious son.

In March 2008, I had a very unexpected phone call from CNN.  I had to ask myself, you mean "the CNN?"  Why would they be calling me?  Kate Taylor, a wonderful lady, explained that Joshua's story had been submitted for World Autism Day which would be on April 2nd.  This would be the 1st annual World Autism Day, and we were being asked to participate in this special and inspiring event!

I was overwhelmed, with joy, that Joshua's life might be remembered in such a special way, and globally too!  I was so excited and later called my brother Doug to tell him.  Within a few moments, I found out that my incredible brother Doug, was the one who had submitted Joshua's story and pictures.  This touched me so deeply.  As Kate and I connected on the phone, and because CNN was stationed in Atlanta, an interview was scheduled with me over the phone.  They also asked for permission to use any of Doug's pictures and videos he had submitted.  As the date of World Autism Day drew closer I was very excited.  But I was trying not to be too excited since I (and many others) had been told that only a few stories would be selected and they did not known which ones yet.  They would be spotlighting stories throughout the day on the TV and also on their website.  As this was the night before, I woke up early in the morning and started watching the news. 

I cannot even explain the feeling of wonder, gratitude and joy that enveloped me when early in the morning a beautiful newsclip of Joshua was given on TV.  It was amazing!  And then, this happened several more times throughout the day.  I went to work for a little while and shared with my wonderful friends the blessings that had already occurred.  It was definitely hard to concentrate and to work.  While I was at work I pulled up the CNN website.  I was even more deeply overcome when the cover picture that day was one of my favorite pictures of me and Joshua -- in a tight, huge and happy hug.  The cover story came with a video presentation of my interview combined with pictures and videos submitted by Doug.  It was beautifully put together, and I could not stop the tears from flowing.  My tears were full of joy and sorrow, gratitude and wonder, and as they streamed down my cheeks, completely full of a mother's love for her precious son.

Readers respond: living with autism

CNN marked World Autism Awareness Day this past week by taking an unprecedented look at this mysterious disorder. The public’s response was quick and heartfelt. Readers gave moving accounts of living with and loving someone with autism. We share some of these stories from CNN iReporters, including one from the mother of an autistic boy who says she received a "a slice of pure heaven in her home."



I miss Joshua every day, I miss his mission and life and this brought some sweet healing to know that he will continue to live on throughout the world. I miss the slice of heaven we daily experienced with his pure love and mission.  I quickly sent out emails and messages so we could share this happy time as family and friends. 

Here is the link to the Website interview:
http://www.cnn.com/2008/HEALTH/conditions/04/01/autism.ireports/index.html

Here is the link to the blog set up by Doug, which includes several of the TV interviews:
http://joshuaeisenstat.blogspot.com/

Here is the link to my blog writings on Joshua and our life together:
joshuasheartfullofhugs.blogspot.com 

This wonderful experience with CNN became even more meaningful as we then had responses from people throughout the Nation expressing tender and beautiful feelings after reading Joshua's story.  We even had a kind and sensitive gentleman begin donating to our Adapted Hockey Team here in Utah County.  Another sweet experience came when "Stop Think Autism" did their own cover of CNN's World Autism Day:
http://stopthinkautism.blogspot.com/2008/04/more-inspiration-from-joshua-eisenstats.html

There is incredible joy to know that Joshua's life will bless the lives of family, friends and strangers, as we enthusiastically celebrated the life and mission of Joshua on this special World Autism Day.

#lightitupblue
#autismawareness

"Welcome to Holland" (1991)

1991 --

"Welcome to  Holland" ---

This story was the beginning of my change in perspective as I now changed course to see

the very beautiful, the very lovely things about my son.

When Joshua was about 8 years old, a friend of mine gave me a copy of a beautiful article called “Welcome to Holland” by Emily Perl Kingsley.  I loved it instantly.  I felt the connection to my situation and knew that I was focusing too much on what Joshua’s could not do, instead of focusing on what Joshua could do.  Yes, there were broken dreams, but this article gave greater hope and greater joy in new dreams.  This perspective was a huge help on the harder days to help me retain my focus on the very beautiful, the very lovely things about my son.

Welcome to Holland

By Emily Perl Kingsley

It’s like this . . .  When you’re going to have a child, it’s like planning a fabulous vacation trip - to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Colosseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say.  “What do you mean, Holland?  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  You’ve landed in Holland and there you must stay.

The important thing is . . . they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease.  It’s just a different place.

So you must go out and buy new guidebooks.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills.  Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

(Elaine L. Jack, "Grounded, Settled, and Full of Hope", Ensign, Mar. 1996, 19.)

The miracle and the realization of the countless very special, very lovely things about Joshua, and the discovery of these new guidebooks, "languages" and wonderful, compassionate and sensitive people was truly a beautiful journey of love.

My hope is that the many posts in this memory blog capture the incredible blessings and joys of my very special and beautiful son.

To read the continuation of my journey to find Holland, click the following links:

http://joshuasheartfullofhugs.blogspot.com/2013/04/1991-2005-finding-holland-my-broken.html

http://joshuasheartfullofhugs.blogspot.com/2013/05/1991-2005-finding-holland-continued-so.html

Jamie Donna Eisenstat (1989)

1989 --

Jamie Donna Eisenstat ---

Having Joshua's challenges could certainly be frustrating, but as we welcomed another child into our home,
we learned to adapt so that each one of our children felt safe, important and loved.

Jamie Donna Eisenstat was born on August 23, 1989.  We were so excited to welcome this beautiful girl in our home.  She is named after her Grandma Donna Klein and has brought such a sweet spirit into our home.  She had the round cheeks that both Joshua and Jeremy had.  Jeremy is a wonderful big brother and it is so fun to watch him hold her and care for her.  Joshua is very frightening when he gets near her.  I was not able to lay her on a blanket on the floor if Joshua was in the house because he would step on her without even realizing it.  It's like he couldn't see she was there.  And because he hits and throws things, we had to be very careful to keep Jamie safe.  Having Joshua's challenges could certainly be frustrating, but as we welcomed another child into our home, we learned to adapt so that each one of our children felt safe, important and loved.

I loved being a Mom.  I loved the uniqueness and beauty of each of my children.  Jamie was so beautiful, and a perfect and precious little girl.  Jeremy was always mature for his age, and his calm and gentle spirit and love for his brother brought more blessings than I can express.  And Joshua's pure love inside his cyclone of a spirit taught me every day as I grew to appreciate, admire and truly love his many strengths and talents.



Aggression, Throwing and Learning

1986 - 1988 --

Aggression, Throwing and Learning ---

I wish I knew (and at times I do) what could bring him to severe agitation one minute
and pure love the next.

At the age of three years old, Joshua was approximately the same age as a 12 to 18 month old.  Later at the age of 15 years (and many experiences later), he had progressed enough that he was the same age level as a two to six year old.  He could say two to three word sentences, repeat the ABCs (with prompts) and count to 10 and sometimes even 20.  With the help of great school teachers, he had learned simple games on his computer — which he absolutely loved He could draw a circle (or an “O”), a straight line (or an “l) and was excited to draw and write more.  He loved to watch his favorite video tapes and/or TV programs, jumping on the trampoline and playing any kind of ball game.  However, he could not pedal or steer a bike, or write his name, or do simple math.

I was working full-time with two young sons, and a husband who was going through school.  Joshua was still in a diaper.  He did not always sleep through the night, and he was an early riser.  Joshua did not understand so many things.  He was aggressive, and he loved to throw things.  We bought him a miniature basketball court so he could throw the ball into the net.  He loved playing basketball, and he continued to love throwing anything and everything.  He loved to play with people’s ears, and with his love of throwing, and his love of ears, I could not wear earnings for a while as more than once my earrings had been thrown across the chapel at church or just thrown somewhere.

I could not let go of Joshua’s hand in a public place or he would be in danger of either running out into the street, or getting lost.  I was in wonder at Jeremy, 2 years younger than Joshua, who would walk obediently beside me at parks, stores, church, etc., as I was constantly trying to keep hold of Joshua’s hand or if I lost it for a moment, I was surely the next moment chasing him as he ran out of control.  For the rest of his life, every day, was spent keeping Joshua safe, and happy, in countless and various ways.

Joshua was like a hurricane, or tornado.  Wherever Joshua went he can and did leave a trail of destruction.  He could mess up a room faster than anyone I knew.  He knocked things off of walls, pushed everything off the table, ripped wallpaper, spilled things and left his mark.  At times it was intentional, and at other times he just didn’t realize that the ball he threw hit a certain picture on the wall or knocked something off the table.  He would also grab me, Mike or his younger brothers and sister and hit them or scream and throw tantrums.  A room could instantly change upon his presence.  At other times, he could walk in a room and hug everyone and walk with his special walk and leave a trail of love.  You never knew which trail you would get.  I wish I knew (and at times I do) what could bring him to severe agitation one minute and pure love the next.

The Autism Diagnosis

1987-1989 --

The Autism Diagnosis ---

The word “autism” seemed like a monster to me.

It was a small word with enormous consequences.

Joshua having fun with his younger, yet "older," brother Jeremy

During these first few years at his new special education school I continued my search for a diagnosis.  At one point, a friend of mine gave me some information on autism, and suggested I look into that.  The description of autism was the first “label” that began to make sense.  Although Joshua did not fit all of the characteristics of autism, he fit into more than half of the characteristics.

  

A definition of autism from the Autism Society of America at the time was as follows:

  

Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals who are mildly affected may exhibit only slight delays in language and greater challenges with social interactions. They may have difficulty initiating and/or maintaining a conversation. Their communication is often described as talking at others instead of to them (e.g., monologue on a favorite subject that continues despite attempts by others to interject comments). 

People with autism also process and respond to information in unique ways. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits:

• Insistence on sameness; resistance to change
• Difficulty in expressing needs; using gestures or pointing instead of words
• Repeating words or phrases in place of normal, responsive language
• Laughing (and/or crying) for no apparent reason; showing distress for reasons not apparent to others
• Preference to being alone; aloof manner
• Tantrums
• Difficulty in mixing with others
• Not wanting to cuddle or be cuddled
• Little or no eye contact
• Unresponsive to normal teaching methods
• Sustained odd play
• Spinning objects
• Obsessive attachment to objects
• Apparent over-sensitivity or under-sensitivity to pain
• No real fears of danger
• Noticeable physical over-activity or extreme under-activity
• Uneven gross/fine motor skills
• Non-responsive to verbal cues; acts as if deaf, although hearing tests are in normal range

(“Characteristics of Autism,” Autism Society of America, website www.autism-society.org).

At the age of 6, Joshua’s doctor confirmed this diagnosis and he was officially labeled as autistic.  Joshua did fit about more than half of the characteristics of autism, such as insistence on sameness; difficulty in expressing needs; repeating words or phrases; tantrums; unresponsive to normal teaching methods; obsessive attachment to objects; under-sensitivity to pain; no real fear of danger; noticeable physical over-activity; and uneven gross/fine motor skills. 

To go along with autism, Joshua was also diagnosed as severely mentally impaired and hyperactive.

The word “autism” seemed like a monster to me.  It was a small word with enormous consequences.  This word labeled my son, and seemed to take away hope and joy.  How was I going to raise a child with autism, a disability that the world was still struggling to understand, and a disability that I knew nothing about?  For a time, Joshua’s newly diagnosed disability and the immense effort it took to raise him felt so overwhelming and lonely.

But we had some unique and wonderful blessings with Joshua — he was happy!  He was loving!  I was thankful daily for this great blessing, because it kept me going.  I knew that even when progress was slow, and it usually was, Joshua could have a happy life.  I could take him to the park, let him play and run free — just like he wanted to — and enjoy life!  I could teach him about love and acceptance.  We could meet people and say hi and shake their hands.  I had no idea at that time how severe challenges could become even greater blessings.



Beginning a Life of Doctors and Schools

1986 --

Beginning a Life of Doctors and Schools ---

I was beginning to realize that Joshua's life and our lives had taken a dramatic turn
and the future was very uncertain and frightening. 
I had no idea how to raise a child with disabilities.  

Life was busy and amazing with my two little boys. I continued to work full-time to put Michael through flight training. We had the typical hopes and dreams for our boys and for our future. I was also serving as Primary President in the North Hollywood III Ward. I was definitely being stretched to learn and do things I had never imagined. And I was beginning my special journey to discover the very special heart inside my beautiful son.

At this time, we began taking Joshua to many doctors. The first positive test result came when one doctor found that both of his ears had excessive fluid in them. He prescribed a strong medication to clear up the fluid. Our hopes were high! He had not been hearing very well! We were waiting for big changes in his behavior following the clearing up of his ears. The ears cleared up after a few weeks, but his behavior seemed to worsen rather than improve.

Joshua went to speech therapy for several months, but we saw no improvement and he had difficulty working with the teacher. I searched for a diagnosis. His doctor ordered various tests, which were difficult and time consuming. One test showed that his frontal lobe was smaller than normal, but there was no indication that this test result would be the reason for the delays in his progression. Another test result detailed an“unusual gait” in his left leg, which made him walk with a slight limp (if you were to look closely or if he were to run fast).

Joshua was becoming increasingly hyperactive and difficult to control. I was in awe of his little brother Jeremy as he progressed normally and without incident. There was no doubt by this time that there was a serious problem. Joshua’s doctor did not seem overly concerned, and even asked why I was so anxious to get a diagnosis. I explained to him that if I had a diagnosis, then I would better know how to deal with the problem. At this point in my life, I did not have education on disabilities, and wasn’t quite ready to accept the diagnosis of any type of disability. Yet at the same time, I was anxious as I wanted help, wanted to know how to raise this very special boy.

I remember clearly the day the doctor recommended that Joshua attend a special education school. He was 3½ years old. He was still in a diaper, and showed no recognition, interest or desire in toileting. He was extremely hyperactive and still did not talk nor understand much of what was said around him. His hand had to be constantly held or he would run away. This was a constant fear as he ran very fast, and had no fear, and needed to be protected at every moment. This was one of many missions of mine, to keep Joshua safe.

Joshua was so adorable as I walked him into his new school. A few moments after walking into the school, the reality of Joshua’s situation hit me like a ton of bricks as I looked around me, and saw all of these beautiful children with their various disabilities. I saw these sweet little children, some in wheelchairs, others agitated, others obviously mentally handicapped, and I just wanted to run far away and cry. I saw crushed hopes and dashed dreams. I cried and my heart ached. I could barely get through the first introductions and meetings with his teachers. As I was in my own home later that day, all of my fear, sorrow and loss showed itself through my flow of tears.

I had just begun a grieving process, that at the time I was completely unaware of. I was beginning to realize that Joshua's life and our lives had taken a dramatic turn and the future was very uncertain and frightening. I had no idea how to raise a child with disabilities. And his disability loomed very large, and for a time it was easy to see what Joshua could not do, and would never be able to do. But with all the emotions I was experiencing, my resolve and determination to give him a happy life also loomed large. I loved Joshua so much. I wanted to understand him. And I really wanted him to feel safe, happy and loved.

Joshua had wonderful teachers, and they worked hard with him, but general progress was slow. Speech was also slow, if hardly anything at all. They had performances and/or programs at school, which we loved to see, but always Joshua’s hand had to be held or he would run away. He loved to run and he could now run fast and far. He could run far, far away! He did not understand that he could get lost or hurt. He seemed to need to be on the go and on the run, always.