Monday, June 10, 2013

A Post By A Different Name

This post was originally going to be titled, "Peace! And! Quiet!" In it, I was going to tell you how I dropped one kid off at summer school, three at VBS and had two and a half HOURS to myself. I was going to tell you how I went fabric shopping to recover two kitchen chairs- alone! JoAnn's! Alone! Amazing! Then I was going to tell you about returning an item at the store- Alone!- before coming home and sipping coffee in peace! and! quiet! before picking the kids up.

Yeah, it didn't happen.

I got the kids all hyped up for VBS. I told George it was just like Jesus Preschool (CCD for preschoolers) but super more fun! He asked if his preschool teacher would be there. I said no but he would make lots! of! new! friends! And look how HAPPY Cami and Joe are! (This is partly a lie. Cami was excited. Joe wasn't.)

I dropped Cole off at summer school and drove the older kids to VBS. When we were there, I caught one of the coordinators/leaders looking at George funny. Granted, he looks like he had some horrible plague. I assured her it was just chicken pox but he had scabbed over and was no longer contagious.

Fellow Catholic: Chicken pox! Poor baby! You know they have a vaccine to prevent that now, right?
Me: Yes, but  my three year old got it from someone who was vaccinated and shed the virus. [Note: this is our best working guess.] He's allergic to vaccines. Oh, and you know that the vaccine contains fetal cell lines, right? (big smile)

At this point, the fecal matter hit the fan. I turned to walk George in the gym and he said, "No, I don't like this!" holding onto the door as if he life depended on it. I began mentally kicking myself. Crowds. New faces. Lots and lots of people and loud music, bright colors and dancing. Hello, visual and audtiory overload. Why did I think he could handle this? I should have brought Penguin. I should have brought his headphones. They are just volunteers; they can't handle him.

I picked him up, patted him on the back and said, "I know it's alot of people but I would like you to try." I handed him off to his poor teenage guides and said to call me if it got to be too much. I said the same thing to the coordinator and then got the heck out of there while listening to him scream, "I hate you! I NO LIKE THIS!"

All the way to JoAnn's I berated myself for leaving him and not warning the coordinators. I realized we keep his life very confined- school where people understand his needs, TKD has small classes, we avoid crowded places and resturants when we can, etc. I think he's doing well but only in those tightly controlled situations, and when I throw him in with the normal kids, it's like feeding him to the wolves. I think he's not severe but maybe he is. Maybe he needs Care and Worship. But maybe he's what my SpEd professor calls a "cracker," a kid who has special needs but not severe ones and will fall between the cracks.

My head was a very confusing and unhappy place to be. 

I got to the store and not five minutes later, I got a call from VBS. George was not calming down, didn't want to participate, etc. I chatted with them a bit, made my purchase and went to get him. By the time I was there, he had gone back to class. We watched him come down the hall with his group (I hid) and he was grouchy but participating. I told them I don't care if he sits and sulks as long as he doesn't bother the kids. I reminded them not to take the "I hate you and I don't like this" stuff personally. And then I got to explain CAS and SPD to a group of six other women who were standing around judging me.

Okay, that's a bit harsh. But, honestly, I'm a bit touchy right now and that's what it felt like. I feel like if George's disability was visible people would be more understanding. I mean, if he couldn't walk they would understand his need for modifications. But everything is hidden in his brain. It's seems like it is sooo hard for people to understand this. He's not neurotypical and when he acts out, it seems like people think it is a result of bad parenting, not his inability to process his environment or speak. He IS learning how to manage this world; I DO get him help. 

So... he was doing better so I left him at VBS, agreeing to pick him up early so he didn't have to sit through the loud closing ceremony. When I got back after picking Cole up, I saw George run into the gym, very happy. We agreed to try again tomorrow and he didn't seem opposed to the idea.

(Joseph, however, is another story. Ahem.)

I'm glad I encouraged George to try VBS. I wish I had brought his tools to make it easier on him and I really, really, really wish I felt like our parish was more encouraging and understanding of the invisible disabilities.

(Note parish does NOT equal the One Holy Roman Catholic Church. The Church loves and values my child and his life. The fallible human beings at our parish are, um, fallible.  I suppose it is my job to show them God's glory in my son. I don't mind this- most of the time.)

1 comment:

  1. "No Like this" is a frequent statement with our son. This morning it was regarding getting dressed to go to daycare. Glad he isn't the only one to so loudly voice opinions on like/dislike.