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Saturday, November 27, 2010

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.

Wednesday, November 3, 2010

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.

Monday, November 1, 2010

   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.