Nana

Zach was so close to my grandmother Nanny.  She watched him every day for me when he was a baby so I could finish my degree.  To say I miss her to the point of madness is an understatement.  She just seemed to understand everything about him.  She used to call him her little D-D Boy.  She taught him to say "ooh wow" All the time he would be looking at things and saying "ooh wow"  They were so adorable together.  She loved to let him walk around with dried oatmeal all over his face and his onesie undone.  Her and my Aunt Ruthie ( who we affectionately called Toot ) used to take Zach shopping for hours over the old West Side Mall.  He would sit so patiently like a little angel in his stroller while they shopped and shopped and shopped.  At the end of the shopping spree he would get a shiny new match-box car (obviously this was before the great match-box abduction of 1997)  and he would predictably take his new car out of the pack and give the  familiar "ooh wow"   It made Nanny so happy to hear him say those words.  Nanny and Aunt Toot used to dress Zach up in all of his outfits and have him march up and down the hallway in what was a little mini fashion show.  He was such a good sport.  This was all pre-autism diagnosis.  Nanny thought Zach was the best kid in the world and nothing and I mean nothing was wrong with that child in her eyes.  She couldn't believe how he would sit on the floor, tip a big plastic car over upside-down and spin the wheels, sometimes for hours at a time.  She bragged about him all the time how well behaved he was for her.  I am realizing now as I write this how Special their relationship was.  They were buddies for sure.  Once Zach was diagnosed life changed drastically for both of them.  I knew time was of the essence so I immediately went to work trying to get him into an intensive in-home program that would possibly bring out more speech and eradicate this thing called autism that was slowly robbing my child of his verbal, cognitive and social skills.  The in-home program was called discrete trial and we set it in motion.  Now, I had just graduated from college and got my own apartment so it was very important that I went to work everyday.  At that time there were no center-based programs for children Zach's age with his diagnosis.  The therapy NEEDED to be done in our home.  Without even giving it a second thought my mother came in like gangbusters.  She quit her job so that she could stay with Zach during the day while a parade of T.S.S workers invaded my home like an army.  They were armed  with flashcards, books, sensory toys,games,reinforcers,charts,behavioral plans,and enough PAPERWORK to wallpaper the entire apartment.   My job was to provide a space for them to work with him, and my mom's job was to supervise him in my home.  My Mom who was affectionately known as Mom-Mom to Zach and all the T.S.S workers,  watched, observed, practiced,read, charted, watched, observed,practiced,carried out drills,taught new T.S.S , kept me up to speed on progress and poured her heart and soul into becoming his greatest teacher and advocate.  We soon had a team, and life as we knew it had spun a complete 360 degrees.  There was very little down time for a 3 year old.  He was up early every morning,bathed,fed and ready to work.  I didn't really mind the intrusion in my home  although I don't think I would be able to put up with it now.  At the time I  just didn't have a choice and I was very grateful that so many people were on board to help us out.  It was  difficult to go to work everyday and try to concentrate on my job.  I also had extreme guilt about my Nanny.  She was not "down with" the whole therapy thing and she would never have been able to witness Zach being drilled and taught the same concepts over and over and over until he was eating drinking and sleeping therapy.
Zach accepted the therapy very willingly.  It was almost as if he knew how important it was for "me" to set this up so that I could have some peace of mind.  The depression regarding the diagnosis lessened considerably just knowing we were doing something about it.  
Nanny started to become sick and was diagnosed with cancer around this time.  She was understandably uninterested in what they were doing academically with Zach.  It was heartbreaking in so many ways.  Zach was diagnosed in April of 1997 and Nanny had died by January of 1998.
As she lay dying on a bed in her living room, she was surrounded by her many daughters and grandchildren and her precious Zachary.  Hospice was brought in and everything seemed to be happening so quickly.  Zach would run around and play by her bed and make all of his funny little noises.  So many times I thought he was disturbing her, but I could not have been more wrong.  One time in particular he was running around the bed making all his little clucking sounds and stimulations.  He was jumping up and down, quite energeticly and I kept trying to calm him down as I did not want him to accidently hurt her because by this time she had become quite fragile and sickly.  I was not even aware that she was conscious, but all of a sudden I heard her whisper "Zachy, and then she started to imitate the little sounds he was making.  I came in to the room laughing because I could not believe that in all of her pain and medicated state she was able to communicate with her little D-D boy.  I began to call him to come in to the kitchen so he didn't disturb her and she whispered to me to "let him be."  I will never forget the look on her face and the love in her eyes. She died a few days later and we were all by her side including her precious little D-D boy.  A few days after her funeral I had just moved into a new apartment and I was unpacking some of my things.  I had a picture of Nanny and Zach that I put into a frame and placed it on my TV entertainment stand.  Right from the start Zach would move the picture from the TV stand and put it on it's own little table.  I would put it back on the TV stand, leave the room, come back in and sure enough Zach would move it back to the little table.  It was amusing.  I could just picture her whispering "Zachy put Nanny's picture on that table to tease mommy"  and he listened.  He only cried for her once and that was on the night of her death. He was playing on the floor and all of a sudden he just started to sob uncontrollably.  He flailed around and had himself a good healthy grief induced meltdown which lasted about 15 minutes.  Here he was only 3 years old with autism, I didn't think he could possibly understand what had happened.  I was wrong, he understood completely.  Much more than I did.  That was 14 years ago.  14 years of many ups and downs but each and everytime I bring out her picture ( the one of her and him that he moved continually right after she died) this non-verbal child will smile and say "Nana"
She must  be so proud.