Monday, June 10, 2013

Trials and tribulations

This was not the post I had intended to write today. I was going to tell you my usual monthly update on the goings on of the diet ( or lack thereof this previous month...) but something else entirely is weighing heavily on my heart and mind as of late. 

I was pretty foolish to think that our sense of "happiness" would last very long, it never does.  There is always "something" on the horizon, that old "waiting for the hat, shoe or whatever to drop" feeling.  I knew that transition was a huge factor in my son's Autism.  I knew that being out of school was going to be difficult for him, and that moving was also going to be difficult for him.  Now, stupid us, we moved the week that E's school got out.  And he was fine for about three days.  And today? It feels like all of the progress we have made is gone.  There are daily temper-tantrums, accidents, increased "ticks",  and a near drowning (don't even ask!)  As a parent, as the only parent who is around this sweet boy all day, it is completely devastating. 

I remember even before I was anywhere near being married, I would pray that I would never have a kid that had any disabilities.  I knew that I would not be able to handle that.  (This was in my late teens, early twenties probably.) I knew that my patience was pretty thin, I knew I wanted to be a mom, more than anything, but I also had no idea how hard it was going to be.  I just knew that I had a certain image of what I wanted my perfect family to look like, and kids with disabilities were not in that picture.  I always thought that God granted those sweet souls to people who were stronger than me, people who could love and handle them.  God obviously thinks I am a badass. 

We never thought that anything was really wrong with E in the beginning.  Chris and I just wrote his little ticks off as him being a bit quirky.  Then his 3rd birthday rolled around the behaviors started to get progressively worse, after we had moved actually (just realized that one actually.)  Doing what most parents do in that situation, we tried to write it off, thinking that  nothing is wrong with him, he just is the way he is.  After all, he was our first child, and we didn't want to say we knew something was not right about him because we really had no clue if something was not right or not.  Maybe this is normal? We had nothing to base our theories on, no experience with any children other than our seemingly normal developing nephews, both who are very different from each other.  And that's all we thought, our son is just different from other kids, as all children develop differently, behave differently, speak differently.  Then he went to preschool.  And again, the behaviors worsened.

Lucky for us, as I have heard many a horror story about children being expelled from multiple preschools, we were blessed so very much with a teacher who was willing to see the potential in our child, to not cast him out, to not just wash her hands of a difficult child.  She worked with us in getting Ethan in a program to help him develop, she worked with him, learned his quirks, learned his tells and was able to meet his needs in every way.  She truly loved our child, and after having anxiety for weeks about whether or not I was going to get phone calls about his behavior, and an exit notice, I began to trust that he was going to be just fine there after I dropped him off.  We still had some bad days peppered here and there, and there were days where he didn't make it to school to save that long trip to go get him early, but he thrived.  And you better believe I bawled on the last day of school.  I am sure the other parents thought I was nuts, but they had no idea the battle we faced that year, and the Alli and friend I found in a preschool teacher.

But that had to come to an end, he can't stay in preschool forever! And here is where our current battle lies.  What does Eth's educational future hold? What about his home life? When and how will he adjust to all of these changes? I know there are hard days ahead, days of adjusting our lives to a new home and to a more lucrative schedule, figuring out where on the spectrum E falls (we find out tomorrow) and what will happen next school year.  But for now, I have to remember that the world seems very different to my sweet boy, that the way we perceive things is vastly different to how he does, and I have to accept that he will never have a normal life.  There will be periods of adjustment all the time, there will be things he will have to learn to cope with, things we take for granted all the time.  And I have to remember that this is not my fault, there was nothing that I could do to prevent it or stop it from happening to him.  I never, ever asked for this, but it was given to me anyhow, and we will get by, by the grace of God, we will!

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