Every now and then

Every now and then, I will pull out old journals from Zach's different teachers, they are our everyday communication books. I have managed to save every one of them as well as every behavior plan, (which is updated every 3-4 months) and every IEP (individual education plan).
I have been tempted many times to throw them away. If you ever saw the size of an IEP, or read a behavior plan, you would know exactly why. The behavioral plans all include the entire history of my pregnancy, demographics, etc etc. Even thought we all know this history does not change, for some reason (beaurocratic red tape perhaps) it is included in EVERY plan. So every three months for the last 14 years I have had to go to a meeting and discuss history and current levels of functioning and progress. Reading these old plans are very interesting sometimes. I just can't believe all of the things that we went through. All of the unexplained behaviors that made absolutely no sense to any of us whatsoever. Behaviors that we thought would never go away or would get worse and worse or more and more and more unusual.

Looking back on them sometimes I can't believe how the hell we managed to get through them. I will give some examples for everyone's amusement. There was the stage where Zach would not walk. He simply would not put both feet on the ground. There was no rhyme or reason for this other than some kind of Obsessive Compulsive need not to place both feet on the ground. This lasted for a few months and he was crawling around when he got home from school, or I was dragging him to get on the bus. He went through this stage while he was getting surgery for dental problems, so there I was dragging him downthelong corridor of the General Hospital, trying to get him to walk. It's actually quite funny now when I picture it, but at the time it was quite a nuisance. The nurses were not having it at all and making him walk. Zach is a stubborn fella when it comes to his OCD so they he'd their work cut out for them. I day he was about 7 years old at the time and it was hysterical to see him crawling around. By this time, I was getting used to his strange stages so although I was put out, I was not really concerned. His teacher on the other hand, who um, now let me find a way to put this so you can understand, HAD NO FRIGGEN CLUE about autism, she was calling me constantly and oh so concerned that he had something neurological going on, well as a matter of fact he did, it was called autism. When I say she was clueless, that is the understatement of the year. I promised I will address those early school issues in a post of it's own because some of the things that happened are just too unbelievable to gloss over. I promise it is coming, and the part of me that needs to forgive and put that all behind me, is emerging, but I need to get it out before I can do that with any degree of success. So anyway once the stage that prevented Zach from putting both feet on the floor was over, ( one day he just woke up and started to walk again) it was quickly replaced by his refusal to walk up or down steps of any kind. Thank the lord he was tiny back then. So he would stand at the top of the steps waiting for someone to carry him down, or make me push and prod him to walk up a flight of steps. Why? I never found out, but I am sure his little brain was telling him not to for some reason or another. Again, one day I woke up and he was downstairs playing in the living room and the problem was solved, only to be replaced by others that were stirring in his brain. This is why it is so neat to read over those old behavior plans, they give me a timeline of events, and to this day,I still don't know how Ron and I got through them. By this time Ron and I were a couple for a few years and he was just starting to get to know Zach's unusual ways. These little phases seem funny but writing them on paper does not do them justice. You can't imagine how many times a child of seven needs to walk or walk up stairs. I just don't know how we managed. This stage was minor compared to stages to come. Reliving them is actually a gift to myself, because I would never believe that I could be so resilient, especially with an uniformed teacher nagging at me constantly, a full time job, a fairly new romantic relationship and a household to run.

What am I placing my faith in?

I unwrapped the sleek little box that held the ipad 2.  The box is holding dreams of communication with zach. Maybe we could converse in more than one word sentences.  Maybe we could put an end to some of the guessing games and the process of elimination regarding his ability to communicate.  Will THIS box hold the key?
It made me think back to the days of long ago when Zach was first diagnosed and after the initial shock wore off, I set out as a warrior mom ( sorry Jenny McCarthy) and I was going to find the magic bullet that was going to pull this boy out of that weird and unfamiliar world of autism.  I was on a hunt and NOTHING was off limits as far as what I would try.  I went for the long hard tedious therapy of discrete trial while still searching for the quick fix, the right vitamin,the right diet,cleansing,healing candles, prayers, Auditory Integration Therapy ( which is a 10 day alternative therapy that uses headphones and different frequencies of sound and cost over 100.00 per day)Reiki, Picture Exchange Card system, schedule boards,
I was even going to try secretin which is a form of an enzyme found in a pig.  Parents were swearing that this enzyme which they were injecting into their children was helping their children become "less autistic"  As I think back to my desperation, luckily I couldn't find a Dr. who would do it, even though I purchased a 60.00 book about it and sent it to his pediatrician.  There was Kelation therapy that I looked into which was supposed to detox all of the heavy chemicals in his body that  "made him have autism".  I was all set to do this until I found out that a child had actually died from the procedure.  There were so many mixed messages. Autism is a lifelong disorder that is rare and incurable,but then I would read autism can be cured by doing a- b- and c along with d-e-f-and g.  You can try h- i- and j but some kids became worse from j, and k is very expensive and don't mix therapy b with therapy g because it may make your child worse.  Make sure you take notes about how therapy c is working because you don't want to give credit to therapy c if it really is therapy f that is making the difference.  Does anyone else notice how friggen INSANE this is ?  I am picturing myself running around ( yes running, I was only about 27 years old ) talking about all this stuff, keeping notes, saving money, going to the library ( pre-internet) and finding all sorts of old outdated and simply AWFUL information about autism.  I tried this and that with minimal results, I always had hope that the next magic bullet was going to do the trick.  Now that I am older and I hope a little wiser, I realize that I was putting my faith into so many different and sometimes assinine therapies.  Each time they didn't "work" and pull him out of autism, I felt more and more defeated and more and more sorry for myself.  It was about this time, that I stopped reading about children being cured.  I was happy for those kids but I was bitter that it wasn't MY kid that was cured.  All of the faith and the hope I was running around with started turning into cynicism and I began to resent hearing about new therapies that were curing children.  I tried it all and NOTHING made any difference.
Before my cynicism kicked in I tried to be optimistic and hopeful, I was wide eyed and willing to try anything and everything.
What caused me to finally crack was that I was putting my faith into the wrong people and things.  Never once did I put my faith in Zachary.  I was so consumed with changing him and trying to mold him into a normal child, that I was forgetting that HE was the magic bullet.  The faith was misplaced.  The faith I needed was Blind faith.  Faith that no matter what happened, he was perfect just the way he was and my focus needed to shift back and remember exactly WHY I was inundating myself with so much information and by not putting my faith in God and Zachary, I was setting myself up time and again for huge disappointments.  All it takes is a shift in perception to realize that between me Zach and God we can move mountains and the most difficult mountain to move was accepting that sometimes the mountain is not meant to move.  This is not to say that I do not believe in therapies that can help him, but I no longer am on the band wagon of "fixing what is wrong."  It is more of "enhancing what is right" and realizing the strength and wisdom that WE possess, and believe in the concept that ZACH knows what is best for him and HE will guide me.  It's not about the end result, it is about the process.  I can't wait to sit down with him and let HIM explore the IPAD and show ME what he wants to do with it.  This is HIS chance to show me and not the other way around.  I feel blessed that I can finally make peace with all of the old disappointments and look to the future and the process, and the bonding that can be learned from spending time together.  The ipad box holds a different kind of hope for me.  Not the desperate "here we go again" but the calm and peaceful curiosity of opening up my eyes to all of the gifts that boy has to share.  They were always there and I am more than ready to become HIS student and not the other way around.

The sludge

A few weeks ago, after we opened our swimming pool, we realized that no matter how much shock, chlorine, baking soda or WHATEVER we did, this pool looked as though at any minute  the creature from the black ( or shall I say green ) lagoon was going to come slithering out.   The water was thick,  heavy,  filthy,  dirty and downright disgusting.  I braced myself for the unpleasant task of draining the entire pool, and getting to the bottom of whatever was causing this swamp land that was once our swimming pool. 

It was a hot humid day, I sent Zach and Ron off on their way and armed with my ipod, I went out and began the draining process.  I sat on the edge of the deck mesmorized by the pump sucking up all the water and watching it drain in all of it's filth into the grass on the side of the pool.  As I watched the pump suck up the water I couldn't help but notice  that the water in that pool was very symbolic of how my mind and my brain had been feeling as of late.  Weighed down with sludge, bad feelings, feelings of fear and jealousy and scarcity and lack and regret and pity, and I imagined that is what these feelings would  look like if you can see them.  I heard the drain gurgling to try to suck it all up but sometimes the sludge was just too much for it and I would have to reposition the drain and the hose in order to get the best suction and get rid of this wasteland that had built up.  Again I thought about my mind.  I got in the pool knee deep in gunk and started sweeping all of the crap into the pump.  I admit it was very therapeutic watching the black dirty water get sucked up and drained.  My mind was very much like this pool.  I had been sweeping the sludge from one end of my brain  to the other, I had been throwing chemicals into the sludge hoping that it  would disappear.  It became very clear to me that you can throw all of the chemicals you want into your brain but the only way to get rid of the sludge once and for all is to drain it and pour in  fresh water.  Disguising  it, hiding  it or trying  to cover it up with pretty smelling chemicals  only mask what is really underneath.   You have to get in there, knee deep and feel it.  I mean really feel it.  You need to visualize what these dark negative feelings look like and how they affect your "pool"  I symbolically thought to empty out the entire contents of my mind and watch the grime flow through the hose and back into the ground where it can be purifyed by nature.  The mind can be emptied by sweet bouts of surrender and meditation and being humble enough to admit that when your pool gets dirty or clogged, there is no easy fix.  Once the pool was empty, I sat back  and  admired how blank and fresh and clean and pure it looked.  I hooked up the hose and watched as clear clean water started to slowly flow into the big empty space.  What garbage was polluting MY pool?   This mundane task that I dreaded so much at first, started my wheels turning.  It was more than just draining the pool, something else was happening.