living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Posts tagged ‘inclusion’

He Bit My Face: Losing Touch With God

My blog has been neglected.  I had a goal of posting once a week.  Unfortunately my last few starts have been such heavy and controversial topics, I’m intimidated to finish them, begin writing them, and most certainly to publish them.  I’ve got works in progress about timing for sharing pregnancy news featuring baby death, one about food and why we’re working at self sufficiency featuring nutrition for Autism symptoms, and one that has been floating in my head about Autism, and its suspected causes, featuring why the vaccination debate will never go away.

In the mean time, I’ve met this amazing mom blogger who inspires me.  Somehow, she manages to write everyday.  I don’t know how she finds the time.  I would accuse her of making her kids up, but she speaks from a heart that undeniably has children.   I highly recommend her blog if you have kids, have a child with ASD, have had a baby die, or if you have multiples.  Can you believe we have that much in common?  Oh, and both our husbands are teachers, and are prince charming handsome.  How is that for unbelievable?  You can blog stalk her here, Four, plus an angel

Her posts aren’t always very long, but always packed full of head nodding and the like, and her short post today has inspired me to just write a post, partly on inclusion too, or more like exclusion.  Today she writes a letter to her storytime mom’s group telling them why she’s not going back, and it’s about acceptance.  It got me to thinking about our playgroup experiences, why we quit before we could be kicked out, and how those moms choose not to let me into their circle because Elijah refused to be a part of the music circle.  I was the mom with the weird kid.  This was before our Autism diagnosis.  I wonder how many of them assumed there must be something wrong with my kid, which then got me to thinking about this time at church, which is what this post is about:

Somehow I’ve become a lapsed Catholic.  There was a time when I wondered how people could let that happen.  I was self-righteous, I figured if I could make it to church after Katie died, after having twins, and later with two toddlers and a baby, there was no good reason for anyone else to allow their faith to lapse.  That was until Autism.

When we packed up and made the big move to Chicago we figured we would find community at church, and we did meet some great friends in the young families group there, who are friends still.   Though we were going through the gauntlet with Elijah,( two and a half to three and a half  was my own personal hell) we continued to go to church every week.  He couldn’t sit still, he couldn’t keep quiet, he wouldn’t play quietly during the service.  I could feel all eyes on me when he would scream, run away, or otherwise misbehave.  I was embarrassed.  I couldn’t understand why my kid was so unmanageable.  I was strict, I would glare angrily over at Kyle when I felt he wasn’t doing enough to keep him in line.  I wanted nothing more than for him to be like the other kids there, and I figured by continuing to go every week he would eventually learn.

One Sunday, while sitting near the front, I was holding Elijah, who was trying his best to break free, so he could run around like Max from Where The Wild Things Are.  Frustrated that I was stronger than he was, he screamed, and lunged forward and bit my face HARD, I had lingering teeth marks in my cheek.  I was mortified, people saw, and I imagined they must think, that he is either the most unruly kid in the world, or I was the worst parent.

Soon after that we stopped going to church.  I needed the break.  Somewhere in that break we got a diagnosis of Autism for Elijah.  Sometime later we went back one Sunday for a service.  While taking Elijah out for a walk during the service in the foyer, I ran into a lovely woman who said we had been missed, and wondered what had been keeping us away.  Upon telling her we had been coming to terms with an autism diagnosis for Elijah and we needed some distance,  she said,” Oh, we thought it might be something like that. ”

I died a little inside that day.  It was obvious to everyone that my kid was damaged, I wasn’t ready for that.  I wasn’t ready to know that people were armchair diagnosing my kid with various neurological disorders, either.

Shortly after that we were packing up and moving again.  We didn’t do much to find a church.  The Catholic church believes that church should be experienced as a family, so there’s little in the way of children’s services.   Besides I’m not sure if Eli could go to an unparented children’s bible study, or if he’d be too much, and we’d be kicked out of one more thing.    He doesn’t do mass so well either, it’s too long for him, and doesn’t hold his interest.   We could go to a more intresting chruch, one that’s louder, has more music, a better program for kids, but I don’t want to, I feel like I’m a Catholic.  So now I’m a lapsed Catholic, because I don’t feel like we can go to church.

I miss  going to church, I miss the communion with God, I miss the quiet moment dedicated to prayer.  I miss believing.  Over time , I’ve come to worry at the possibility of no God.   In some small round about way Autism has stolen my faith, along with my energy, patience, and the parent I imagined I would be.  No God means no Heaven, and no Heaven means no future with Kate.  Autism, it seems, is slowly stealing her away as well, it’s too unfair. I pretend I still have faith. I cling to it with hope, that in saying it out loud it might make it true, but I worry about nothingness with a dread I can’t even begin to explain.

So I stand at this crossroad wondering what to do.  Give up being a Catholic for a church we might integrate into better, give up church, or start going to a Catholic church again and pretend the eyes on me aren’t there, when Eli starts making sound effects during communion prayers.  I’ve been standing here for some time, and I imagine I’ll stand here a bit longer, losing my faith all the while.

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