Wednesday, August 14, 2013

A Glimpse of a Miracle Worker

Once upon a time there was a special little boy.  Though he was born prematurely, he was perfectly formed with a beautiful olive complexion, rosy cheeks and an the sweetest angel kissed lips.  From the day he was born he had an other worldly presence about him; as if  a part of him had remained in heaven to worship with the angels.  He was innocent and frail and beautiful.  His twin brother came into the world seventeen minutes later than him.  Whereas he was frail and ethereal, his brother was handsome,robust, and alert.   Even as a newborn, the stronger, younger twin guarded over him, always looking for him, reaching for him and crying out for his needs.  After an arduous pregnancy, their mother wept tears of joy over their perfection.  They were such beautiful gifts from heaven.
As the boys grew, the younger twin was adventurous and bold.  He loved to test his limits and was independent to a fault.  The older twin, however, remained disconnected from the world around him.  It was as if he was locked in a tower, deep within his soul, waiting for someone with the right key to set him free.
He sat by himself, oblivious to all that happened around him.  He was content but so very far removed from the world around him.  
Jamie 2yrs old

That sweet, ethereal baby boy was Jamie.  His younger, stronger twin was of course Alex.
My pregnancy with them had been very traumatic.  I have written about it before so I will just hit the highlights (or low lights, depending how you look at it).  At 25 weeks pregnant I fell down a flight of stairs while carrying my one year old, Sam, down for breakfast.  Blessedly, Sam was completely unharmed but I shattered my elbow and spent the remainder of my pregnancy in and out of the hospital, mostly in.  The twins were protected but Jamie's sack had a small rupture, that slowly leaked amniotic fluid.  I watched them develop daily (sometimes several times a day) on the ultrasounds that I had.  That was pretty cool. I had many amniocentesis (where they insert a long needle into the sack and withdraw amniotic fluid for testing).  During those tests Alex would move around until he was close enough to bat at the needle to keep it away from Jamie.  What an amazing, amazing thing to watch.  I got to know my boys personalities a little before they were even born!
They were born at 35 weeks.  Jamie was in distress and had to be placed on oxygen. From the moment they were born
Jamie was different.  He never responded to human contact.  He seemed to be other worldly almost. 

As they grew, my concerns for Jamie grew.  He never broke out of that shell.  He remained alone in his own little world.  He started to talk around one years old but stopped by two.  He did not respond to pain, cold, heat, hugs, darkness, tickling, conversation or anything.  He never sought human affection on his own.  Then he started screaming, all day, every day.  He would violently beat his head.  I spent all day holding him, singing to him, counting in a monotone voice (that helped to calm him).  We brought him to his pediatrician, who sent us to a pediatric neurologist.  He diagnosed Jamie with severe autism.  He gave us very little hope that Jamie would ever improve.  He wanted us to put him on heavy seizure medications and psychotropic drugs to manage his meltdowns.  He recommended some therapies but said in his opinion Jamie would probably not respond to them. 

Our pediatrician recommended that we contact the school system.  We lived in a county, in Virginia, that had a very good autism program.  He thought they may be able to help, or at the very least give me a break a few hours a day.  We applied and Jamie was accepted into their preschool autism program.  He was barely three but everyday I loaded him and his stuffed animal onto the special bus.  He was so very tiny.

Then an amazing thing happened.  I met a miracle worker.  Her name was Erin and she completely changed our lives.
Erin was Jamie's teacher but she was oh so much more.  She came to our house to visit and observe Jamie in his home environment.  She had so much love and passion for the kids she taught.  She poured her soul into each and everyone of them.  Under her and her team of amazing therapist, Jamie began to break out of his tower of isolation.  He started talking through stuffed animals.  I will never forget the day he told me "Bunny wants a drink".  It was the first time he had expressed any kind of need or desire verbally!  Later he started talking in the third person "Jamie wants a drink".   
I cried the day Jamie looked up at me, after a meltdown and said "Jamie's broken."  I held him and rocked him and told him without a doubt Jamie was NOT broken, while my heart shattered inside my chest.  
I cried again the day Jamie came up to me and said "Jamie loves Mommy."  I picked him up and held him and rocked him and told him how much I loved him, as my heart exploded with joy inside my chest.
I cried the first time Jamie sang a song with me. There are so many, many moments like these.  Every single one of them was made possible by his teacher, our angel incognito, Erin.
Tomorrow, we will see Erin for the first time in six years.  Jamie is now ten.  He is mostly on grade level at school.  He carries on full conversations, plays with his brothers and the neighborhood kids.  He is an extremely gifted artist, loves music (especially Johnny Cash), plays video games.......all things that the pediatric neurologist gave us very little hope of ever happening.  I cannot wait to hug Erin and thank her for the gift of my son.
Jamie 10 years old

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