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.

Now I have to say that Zach did many things very very early in life.  He  has what is known as "regressive autism".  To me this is cruelest form of autism  and it really messes with your mind.  A child with regressive autism develops normally, often times hitting milestones much earlier than usual, only to have many of these skills just disappear one day.  True to form of most children with this disorder, Zach developed his skills and they started to disappear somewhere around the age of 18-20months.
He  was a very early walker.  He was only nine months and he was so tiny.  It seemed so strange to see this little munchkin  tooling around so effortlessly.  I can't remember a time when he didn't crawl and he was scaling steps by 5 months of age with grace and  ease.   He was also saying many words, actually putting three words together at seven months of age. ( I have it on old V.H.S  zach sitting on my inside porch looking right at the camera and stating " I-wanna-go-out.") I was so proud of him and in awe.  He loved books and he loved to be read to.  The Foot Book was one or his all time faves and we read it until the pages wore out.    So what the hell happened?  The best way for me to describe it is as follows
Zach was a normal child with a few odd behaviors ( such as his super highway compulsion, the ability to burst into tears or burst out laughing at the most random and unusual times, and some strange fascinations with his eyes. He liked to crawl under tables and follow the patterns of the wall with his eyes)  These behaviors were unusual but he was so damn cute, charming and lovable I just thought he was becoming eccentric.  Over time though all of these eccentricities started to become very pronounced and he began to start ignoring people so he could go off into his own world.
It really messes with your mind when you are gone all day,  you come home, and your child barely notices you walked through the door, or looks right past you to see what is in the bag you have in your hand.  The match-box cars  became an obsession that was starting to really worry me.  I mean he slept with them, he had 5-6 in his hands at all times, he would try to eat while holding his match-boxes, he couldn't ride in the car without having one with him.  This was around the time I started to suspect that this was a lot more than a childhood passion. It was an obsession, and in my mind these cars were getting in the way of communication.  They were his LIFE-LINE.  I finally panicked and one day while he was at my mom's house  I packed them all up, every one of them.  I searched the house high and low to make sure I got them all.  I placed them in a huge box ( by this time we had accumulated hundreds) and put them in the trunk of my car.  My intentions were good, I wanted him to start interacting with ME and not those damn cars.  As I am writing this now I realize how desperate I was to do that.  He loved those cars, they made him feel safe and happy and I snatched them away from him with no explanation.   I know  I meant well but it still makes me sad.  I was SO uninformed  to believe what I was doing was in his best interest.  I now know that when a child with autism has a Passion ( yes a passion, not an obsession) you need to build on it, honor it and use it as a teaching tool.  I just didn't know any better yet I still feel guilty to this day, that I put him through that. He came home from my moms and was frantically running around the house looking all over for his precious cars.  Mind you, at this time almost all of his speech was dwindling away but in a fit of panic and I believe desperation,  his big blue eyes made direct contact with mine( eye contact was another trait that was slipping away) and  he asked me  in a very matter-of-fact tone,  "what happened?"
I wish I had an answer.

Hillbillies on Tour!

Now this is one of those phenomenon that   was very hard to explain.  People would ask me, what is your son afraid of, and I had to tell them the list of things that would absolutely send Zach into meltdown mode.  As I think back now it was quite an unusual list of occurrences that would flip him out.  Let's see....  Old MacDonald the song, Look the hell out if Old MacDonald played somewhere,  ANYWHERE, someone was going down! He had one of those musical books where you push the button and it plays a song, it played a bunch of songs and he was fine with them until Old MacDonald, he would scream, throw himself to the ground, flail and kick and dissolve into a puddle of crying mush on the floor.  Old Macdonald had a flip out time of at least 15 minutes and I walked around silently praying that we did not hear Old MacDonald on our travels, or else  I had some real explaining to do to  a group of wide eyed confused strangers. Something on Old MacDonalds farm was pissing Zach off royally, or maybe it was the old farmer himself.  I still don't know. The crux of  problem was:
How do you explain something like this? I had no explanation as to why these seemingly harmless things caused  sheer terror anxiety and panic in a little boy. Then there  was a scene from a Barney tape where there was a rain storm, the MTV video " Scream" with Michael and Janet Jackson, the beginning of wheel of fortune, when they yell Wheel Offfffff Fortune,The start of the nightly news,certain cartoons, live applause ( for some reason studio laugh tracks and  tracks of applause did not bother him,  only if it was live), bubbles, certain balloons and the one that was the most puzzling to me the Hillbillies on Tour Bus.  Allow me to explain.  Zach was still into his matchbox car phase and I started to buy him bigger and better matchboxes like buses.  I found a black and silver bus with a country singer logo on it.  The side of the Bus read Hillbillies on Tour and let me tell you it was one of the sorriest purchases I ever made ( or so I thought)  I bring it home and take it out of the plastic.  Usually he would snatch it up and the car would  find it's place among the others in Zach's super highway.  This bus was different, he just stood and stared at it for a while. I could feel the tension start to build.  He then started smacking himself repeatedly in the head and yelling No!  over and over.  I tried to show him the bus and let him touch it and he was petrified beyond anything I have ever witnessed.  Talk about confusion....  I mean what the hell did this bus ever do?  I hid the bus in an old cookie jar and he found it, and just started screaming, he wouldn't touch it and would completely fall apart at the seams whenever this bus made an appearance.  It got to the point where I had it hidden and all I would have to say is "where is the black bus?" and he would start to scream. Ok now I know that this may sound cruel and I am not proud of it BUT, at this particular time Zach was not behaving the way that he should have.  He had no inclination of danger and he did not listen very well when I told him not to do something.  So yes, I used it.  The black Bus.  Boy did I use it to my advantage.  "Oh you don't want to listen? Ok I will just get the black bus.  Problem solved!  You don't want to use the potty, well maybe I will have to get the black bus ( this didn't work as well as I wished it would but it definitely was a start). Oh you don't want to go to sleep or sleep in your room, ok where is the ........ and the problem would be solved.  Did I understand it?  Hell No! But if something works, as strange as it may be you gotta go with it.  So I used it. over and over and over.  If someone ever had to watch Zach, I would have to give them strict orders:  no news, no wheel of fortune, no applause, no Old MacDonald etc. and if he doesn't listen just bring out the old black bus with Hillbillies on Tour and the problem should be solved.  Well I'm not sure what T Berry Brazelton, or Dr.  Spock would say about my method of discipline, but at the time it was about all I had to work with.  This kind of "stuff" started to become normal to me.  Needless to say I didn't go out much back then and when I did,   just seeing the look on the caregivers face ( usually my nieces or my teenage cousins) when I explained the "restrictions" was PRICELESS!!!  I mean utterly hysterical.

   Zach has been through so many freaky stages it's hard to even know where to begin.  When he first started to act "different,  he was about one and a half years old and he was obsessed with matchbox cars.  He had about 5-6 in his hands at all time  He would try to eat with them in his hands, and when he wasn't trying to eat he was organizing super highways all around my apartment.  Complex designs of cars and trucks all placed in systematic order.  If I dared to move a car when he wasn't in the room he would come running in take one glance at the minimum of 60 vehicles on his highway and he would immediately run over and "fix" what I did.  It was quite interesting to watch.  Here was a little boy, so tiny only a year old and he was building highways, making sure all the cars and trucks faced the same direction, with color schemes and visually pleasing patterns.  I used to get annoyed when they were all over the house and I would trip on them, so I would clean them up and he would immediately start building again.  One morning I found all of my hairbrushes and combs lined up on the floor a beautiful little pattern of order and structure.  I wish I could have appreciated this more back then but I must admit it seemed so odd it scared the hell out of me.  Then there were the throw pillows on my futon, that he would not allow.  He would take them off, and I would put them on, here we were two nut-cases  fighting over throw pillows.

I used to love to buy him really cool matchbox cars.  I would love to bring one home to him after I would return from my night class.  One night I stopped off at CVS before I picked him up to get the usual, baby wipes, diapers, binky, hot tamale candies ( for me) and a matchbox car for Zach.  I got him a yellow NASCAR matchbox with Penzoil as the sponser.  I thought he was going to love it.  Damn, was I wrong.  I watched him making his super highway and I would never ever see the Penzoil Car included.  I would find it hidden all over the place, and me being my antagonistic self, I would sneak it in to the highway when he wasn't looking.  I found this car hidden all around the house, under the couch,in the bottom cupboard,stuffed in the cushions of the couch,in the bottom of the storage closet, behind the garbage can, ANYWHERE but in his super highway.  I couldn't understand why but I admit I got quite the kick out of it.  Well I guess Zach eventually was the victor ( a very common occurrence )because  one day the Penzoil car was gone, disappeared, never to be found again.  My God, he hated that car and I wish I could have snuck into his thoughts to find out exactly why.  

A New World

So here I was thrown into  this new world that I knew nothing about, my brain switched and turned constantly from being positive and I am going to beat this, to helpless, hopeless despair.  These emotions switched hourly.  Back then way back in 1997 there were not too many options available but I spoke with a few pioneers of autism who swore by discrete trial, ABA in the home intensive treatment.  I read the book Let Me Hear Your Voice and I was so moved and inspired by Catherine Maurice and what she did for her two children who were dx'd with autism and had very similar characteristics as my son.  I just couldn't wait to get the party started.  Little did I know, and I was soon about to realize that NOTHING is quick in the arena of early intervention.  Now I know this seems like a paradox.  Children need early intervention they need to catch things early and get moving in order to change the patterns of the brain that have not yet been fully developed , but we needed to make an appointment for an intake, we needed the formal diagnosis, we needed to rule out Laundau Kleffner Syndrome with a cat scan and rule out hearing problems with an audiologist (  a complete disaster and if I ever see that son-of-a-bitch of an audiologist Dr.  Baras who treated my son and I like second class citizens,  I swear I will spit in his face)  All of this took so long and I was reading books and trying to do the therapy on my own, I was out spending hundreds of dollars on the best puzzles and stimulating toys.  My whole relationship with my son changed and turned into therapy, I thought I was doing the right thing.  My beloved grandmother who has long since passed on used to get so upset with the way Zach's whole carefree life totally changed.  In her words "I  love his sweet little ways, why are you trying to change him?"  This broke my heart but I was in this for the fight.  Oh what a fight it has been.  Now the subject of the prick audiologist brings up another important issue that I feel needs to be discussed.  When my son was first dx'd I felt as though I was this poor soul who had to  put up with rudeness and ignorance from the medical community.  I felt like these people were doing me a favor by seeing my son with autism and I should be so grateful and let them walk all over me.  Oh I cringe when I think about those days, I was at their mercy and so vulnerable.  I put up with a lot of bull shit, especially from the school system but that is a whole different entry.  I walked around apologizing for everything, and feeling like shit when my son would not cooperate with a hearing test ( now that I think of it, not many three year olds are too cooperative, but I was made to feel different and that I NEEDED to assist the Dr in this monumental task and he was doing me a FAVOR by providing a service for my son.  OOOOHHHHH when I think back now of the things I put up with back then I can't even believe I was the same person.  Don't get me wrong, many many people were very nice but some were just plain RUDE and man would I love to give them a piece of my mind NOW!

Isolation

I will never forget the ride home from the Dr. office on what I chose to call D-Day.  Looking in the back seat and seeing my  gorgeous child smiling and moving back and forth to the music, knowing I had to go tell my parents that  what I had suspected was the truth for sometime was now officially confirmed.  Autistic Disorder Mild to Moderate.  There it was in black and white along with the numbers of how horribly low he scored on a basic developmental test.  I had to go tell my parents then my grandmother, then the extended family, my friends, my co-workers. My stomach was in a knot.  His father was with me but by that time we were  no longer together and I couldn't care less what his reaction was, because I was absolutely sure it didn't even come close to the devastation I was feeling.  It was surreal.  Was he now a different child than the one who woke up this morning?  I remember thinking that I had to stay strong no matter what even though I was dying inside.  All kinds of emotions came bursting to the surface, but the one that permeated in my soul was that I was now part of a hopeless  group of losers that people either felt sorry for,  or just didn't really care about because they either couldn't relate or would stay away not knowing what to say.   How was I going to face anyone?   Then I had visions of kids making fun of him, and like a shot to my heart  I started to remember that there were kids in  school that I made fun of and my heart just dropped.    I thought about the parents of those kids and I thought about how  I thought I was so invincible.  I figured this was my punishment, this was my life now and I deserved every bit of it.  How dare I make fun of those kids?  What the hell was the matter with me and what was missing inside me that  prevented me from having the compassion and knowledge to realize that those kids did  not ask for their affliction?  Holy shit  NOW I AM SCREWED!  The guilt started coming in waves, shooting up the entire length of my body, and I was barely out of the parking lot of the Dr.  Office.   I never felt more alone and isolated in my life.  Zach's Dad was with me and he was trying to talk to me and was asking me so many stupid questions that I did not have the answers to.  I just wanted him to disappear and leave me the hell alone.  I wanted to grab Zach and run as far away as we could so that I would not have to explain anything to anyone.  Some people reach out for support but I was just so god damn angry and petrified.  And again I turned around and there was my sweet innocent little boy who was just doing his thing sitting in his car seat with a fist full of match box cars humming and kicking the seat.  Tears streaming down my face I dumped his Dad off and went to my parents house to break the news to them.  I wanted to disappear and never ever come back, meanwhile all around me people were doing their thing. It was the beginning of spring and people were out walking, driving, shopping, laughing?!  Laughing???  How could they be laughing?  Didn't they know?  I was sure I would never ever laugh or smile again, I was doomed.  Life as I knew it was over.  Every single dream I had was shattered, smashed, busted like shards of broken glass.  Welcome to my f-ing life.  The guilt became almost unbearable.  Here I was fresh out of college, newly single with a whole new career and life ahead of me and now this.....

Way back in the Day

It's hard to believe that there was actually a time in my life when I was not affected by autism. My amazing boy will be seventeen this year.  He was dx'd at three and a half years of age, it seems so long ago.  It's strange to think back because in those early days when I started to suspect something was wrong, I didn't do very much smiling.  In fact I sometimes thought I would never smile again.  How could I right?  My beautiful baby boy had autism, and let me tell you  THAT WAS NOT IN MY PLAN, as a single parent who just graduated from college with a degree in social work.  I was not ready for the monumental changes that this was going to bring upon me.  I remember taking an online quiz about depression.  This was back in 1998 when I got my first computer.  I took the online quiz which was a genuine tool that clinicians use to gage depression and I was off the charts, I mean off the charts.  Give yourself 20 points if you recently split with significant other, CHECK. 20 points if you recently experienced a death in the family.  CHECK CHECK.  20 points if you recently graduated from college CHECK, 20 points if you moved into a new place CHECK. 20 points if you have a child with a disability CHECK.  You get the picture?  There is so much to  share of my experiences.  To say it has been a roller coaster would be a gross understatement, but there have been so many changes and ups and downs.  By writing this blog I understand that I need to "go there " to go to those places in my mind, to revisit those painful emotions that hurt so bad I thought I was going to break in half.  At first I thought this blog was going to be about my son Zach and his journey through autism but MY journey is just as significant and believe it or not,  sprinkled through all of this pain and heartache were moments of pure hilarity and self discovery.  THAT is what I want to share!
If there is anyone reading this who has just received the news that your child is autistic and you are thinking how hopeless things are and that you may never smile again, I raise my glass to you and say  "Join Us"

Getting Started

Well they say if you want to write  just write.  I always wanted to share my adventures as the mom of a child with autism, so much joy, so much heartache, so much confusion yet so much clarity.  That is the world of autism a confusing puzzle with scattered pieces.  Sometimes the puzzle comes together  and starts to look like a real picture, then in a flash someone knocks the puzzle to the floor and the pieces just shatter, get lost,change shape, and re-arrange to form a completely different picture.  Welcome to the world that is mine.  I hope to share with you some of the more memorable experiences that my son and I share.  I want to relive the journey and take people along with me.  It is my hope that people will  be able to laugh and learn from my experiences,the mistakes, the triumphs, the changes and most of all the humor.