Haunted

Before we knew (okay I always knew something was up, but we didn't know in a clinical way what was going on) for sure that Eli was different, we had a rough night with Eli.  As I held him and rocked him in my arms and hummed to him, he couldn't be calmed and he was so restless and upset, but I just talked to him said, "Please stay mama's baby boy forever."  Dave stopped me quickly and said, "Don't say that!"  I know he knew what I meant; I was cherishing those moments of my littlest guy in my arms all content to rely on me for his every need.  They grow up all to fast.  But as a parent the scary things loom in the back of your mind.  What if something happens to him and he doesn't grow up?  What if something happens and he remains in a baby state for the rest of his life?  What if ... what if ... what if?  Well if it happened then I wished it.  I did that.  And logically my wishing it doesn't make it so- wouldn't that be nice? I wish for world peace!

And now he we are.  No one can possibly know what the future holds for any person, especially a young child.  But it is more likely than not that Eli will always live at home.  He likely won't get married and have a family.  He will need us much as a young child needs their parents, for the rest of his life.  I am okay with this.  It is sad, it is hard, but I have come to a place where I have accepted Eli as he is and everything that means.  What I don't accept is .. I wished this.  I wished him to be a baby forever. 

Please stay mama's baby boy forever ... has haunted me since the day we were first told he is autistic. 

You Writing You Note?

At the end of his therapist sessions, 2 of his 4 therapists "write notes" as Eli calls it.  They give a quick summary of how the session went and what was worked on and sometimes what needs to be worked on.  I love and hate these notes.  When they're good, it's good.  When they aren't good, you guessed it, it isn't good.  It can be hard seeing my baby boy through the eyes of a therapist sometimes.  Sometimes they see accomplishments I didn't recognize, which I love.  I love knowing that he is accomplishing so much and gaining so much.  More often though they see the issues I see but prefer to pretend are figments of my imagination or are just me over thinking.

Today's "write notes" contained this:
"Mom as well as Gen and myself have noticed a decreased in engagement and a shorter attention span pair with an independent need to play solo ... Eli would become frustrated at times today so I would use a calm voice and try to re-direct Eli or give him a time limit.  Eli did not respond well to demands today so we kept it low key."  That's therapist speak for he's slipping in.

I have noticed that he is less engaged and try as I might I can't seem to get him to be engaged like he used to be.  He just simply prefers to play on his own.  He gets irritated to the point of rage sometimes if I try to interject myrself into his play.  Independent play is good!  But, what's bad is his lack of desire to engage.  Especially since he use to seem okay with it.  It's hard to see him in his own little world.  He doesn't need us like most kids.  He is perfectly content to just be him and be by himself.  This is a terrifying thing for a mom of an ASD kid. What if he gets stuck in and never comes out?  I can't even go there.

So sure, I noticed it, but at times I see things and the therapists don't and they assure me that it's probably just a phase or he's testing us as his parents.  Yeah, well, now everyone is seeing it.  So it must be bad.  We will have a pow wow with his service coordinator tomorrow morning to get her thoughts and work on an action plan.  I can't lose my little boy.  I can see him slipping and drifting away and I keep reaching out my arms to him, but he runs away.  It's conflicting; he is happy alone, he doesn't *need* people in a social way, but he needs this world whether he knows it or not, feels it or not. 

This world isn't built for him and he isn't built for it.  It's often like we all speak one language and he speaks and understands another.  We need to bridge that gap.

So when Eli said to his therapist today, "You writing you note?" I knew it was that time again.  Time to sign the paper that says "your kid is getting stuck in his own world and we need to help him to come out."  I don't like those notes.

Literally Speaking ...

I read somewhere that being on the spectrum can make a person quite literal.  I've wondered how we will manage that being some of the most sarcastic people I know.  It can be confusing to an autistic kid; sarcasm.  And yet sarcasm is a huge part of who I am.  I also use a lot of phrases and sayings that could have many other meanings, but you know, people just know those expressions... right.  So what's a sarcastic and expression using mama to do?! 

I probably shouldn't tell the shoe addicted kid on the spectrum that his shoes aren't broken in yet and that's why he has trouble slipping them on his feet.   It took 10 minutes to calm him and get him to stop sobbing, "My shoe breaking?  You breaked my shoe?!" It was all good after I showed him his intact shoe, got it on his foot and told him I was just kidding about the breaking in thing.

In cute literal moment: His therapist was working with him today with pretend play using duplo and duplo people.  She, speaking as the farmer, said to Eli's duplo guy, "See you later alligator!"  Eli replied with a puzzled look, his hands in the air and, "We don't have an alligator." In a voice that said he was sorry but there was no alligator to say goodbye to. 

I'm working on it.  At first I tried to explain what breaking in meant.  That got me some funny looks and more tears.  So then I just tried to repair the damage I did with those two simple words.  In the end he's okay and I know not to use that expression again!  I wonder though if it gets better?  Will he learn some of these expressions?  Will he figure out my sarcasm like the older two kids have?  Or will I accidentally hurt him with my words forever?  I guess only time will tell. 

His name is Eli

And he is the reason I started this blog.
He is awesome.
He is 2.
He is funny.
He is moody (wait, I already said he's two.)
He is spunky.
He is independent.
He is stubborn.
He is full of personality.
He is strong willed.
He is autistic.
He is my inspiration.
He is wonderful.
He is beyond adorable.
He is opinionated.
He is a picky eater.
He is a kid who needs more input.
He is a terrible sleeper.
He is intelligent.
He is amazing.
He is my third born.
He is all boy.
He is particular about his clothing.
He is fast.
He is clumsy.
He is a puzzle whiz.
He is a fan of wheels.
He is very talkative.
He is literal.
He is handsome.
He is inventive. 
He is my little guy.
He is full of love.
He is loved.