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.