I can't believe that I haven't written anything in over a month. My brain has been dry, my heart has been struggling...I haven't had the words to write and I haven't had the motivation to share them.
Then, there are days like today, that remind me where we have been on this journey, where we are and where we are going to. Days that remind me that my son is different. Days that remind me why I hate Autism and the people who don't understand Autism.
Autism....the ugliest word in the Dictionary.
These are my feelings; they are raw and true. Sometimes I speak truly what is on my mind; always do I speak from the heart.
Autism kills my spirit and the hopes I have for my son.
Sometimes, Autism defeats me. It is like a heavy rock that I can't pull off us. I have dreams of what my son's life will be like, especially when he's older and I may not be around to shelter him from the world that he tries so hard to understand but probably never will.
I know every parent wants to protect their child(ren)...well, I'm sure there are some parents that don't care... but for the parent of a child with Autism, the thoughts and the instinct that we have to protect our child runs deeper and is more powerful than those of the neuro-typical child's parent.
Today started out like any other day. Joey was on "Lego talking," also known as youtube Lego videos and I was getting ready to take him to school. We didn't have speech or OT today. I kept giving him a countdown to when we would be leaving: 30 minutes, then 20, then 5, then 2. He was already dressed so all we needed was to get socks and shoes on.
After I got his socks and shoes on, I noticed a distinct poop smell. My son has pooped a few times on the toilet (a miracle!) but it is not a regular thing for him yet. I asked him a few times if he had an accident and he said no. I checked for myself and it's a good thing I did because there was a huge hard rock of poop in his underwear. We were already running late so now we had to move quickly, which is a thing my son does not like to do. I got him dressed and got him in the car and away we went.
We got to school and his class was already lined up for lunch outside and departing to the cafeteria. We got out of the car fast and ran to join them. His teacher's aide gave me a look when I told her what happened and why were late. Like I needed to explain it to her? I was so annoyed, as I often am with this school because the staff seem to have no love or affection for any kids, let alone special ones.
I kissed Joey and off I went, hoping his day would be ok, but all I could remember was this sad looking little boy standing against the brick building, looking as if he was disappointed in himself. Did I make him feel that way? He's so sensitive so it's hard to tell. I try so hard to not let him know when I'm frustrated or mad or sad, especially when he is the cause of those feelings.
Fast forward to afternoon pick up. I get there 2 minutes late (thanks to crazy Christmas shopping lines) and once again, I find myself running to the school. I yell to a father to hold the door but do you think anyone would do that these days? NO! As I wait in line to sign Joey out, I see his smile through the door and his little voice say, "Miss Simo, I see my Mama. Miss Simo, my Mama's here." As she is ignoring him, I quietly tell him to wait his turn to talk and just then, some little kid who I don't recall ever seeing in his class, runs by Joey and knocks his cup of water out of his hand. It literally goes flying and water goes everywhere.
I speak softly, telling Joey that it's ok and that it wasn't his fault and he is visibly upset, crossing his arms and pouting. I quickly go back to signing him out so we can get out of there, when I realize the "cup hitter" is right below me and guess who his parent is? The guy who didn't hold the door for me earlier!!! I bend over and say "can you apologize to Joey for knocking the water out of his hand?" I get no reaction! The kid looks away, even after I said it twice and the bum father says NOTHING!!! Why should we expect kids to have manners when the people who are supposed to be teaching them have NONE!! At least a mom next to me said, "I hope it wasn't my kid who did it." At least I know someone is listening. But it's things like this that make me think, does the cup hitter have Autism and is not diagnosed? Or maybe another type of delay, because my son with Autism has better manners than most of the people I encounter on a daily basis. It's the blank stare that got me.
I'm glad that Miss Simo had the decency to bend down, get Joey's attention and say, "I know you didn't spill your water on purpose. I know it was an accident and it's ok. It's not your fault." He seemed better after that but he still just wanted to get the hell out of there.
Miss Simo went on to tell me that when they were playing a game of "Freeze Dance" and it was down to another boy and Joey and Joey lost, he got really upset. He can be like that, but not usually when me or his Dad are absent. He just seems to be having an off day. It's days like this when I worry most about him fitting in and being ridiculed for being different. I might be acting over-protective but I can't help but worry. Every parent wants their child to fit in and to have an easy time with peers but for our kids with Autism, it's a million times harder and half the time it's because the kids give up on trying to fit in, knowing that they will continually fail.
Joey seemed to have a better day as we left and headed to Neema & Grandpa's house. He was a little agitated from time to time and had an incident where he was walking and seemed to simply fall down unexpectedly. He hit his shoulder on a wicker cabinet, cried and ran into my arms but then was ok. I'm not sure if he had a seizure at that moment and if this is the root of the problem; if he's feeling out of it and not quite able to get a handle on life. I know it didn't help last week when he was so sick that he barely ate or drank so it was hard to get any of the required 3 daily doses into his little body. Maybe he is still feeling the after affects of that.
I don't know what it is but I do know that this too shall pass, tomorrow is a new day with new challenges and new triumphs and that it's always important to just breathe and remind myself that God would not have put me on this journey if he didn't think that I could handle it and that I could give Joey the best life possible.