I try to focus on the positives, which isn't really a bad thing, but in that, I’ve been accused of “sugarcoating” my life a little bit. Especially where Bella is concerned.
There are a few reasons that I choose not to write about the darker side of living with autism. I don’t want people to feel sorry for me, or her. I don’t want to come off as being a horrible mother and, the biggest reason, is simply guilt. I have no qualms with admitting when my other kids do stuff that drives me nuts, but for some reason, when it comes to Bella, I just feel bad when I let myself admit that some of her behaviors, drive me nuts. I know that most of it is out of her control, which just goes to make me feel even worse.
I want to say first that I am NOT ashamed of my daughter. When we’re out in public and she’s spinning, flapping her arms and flicking her fingers, I know that she’s just trying to make herself feel better. I can see grown adults snickering, pointing and laughing at her like she’s their personal source of amusement. Bella smiles, unaware of what is really going on around her and sometimes I think that’s not such a bad thing. As much as I want to yell at these people and explain to them what’s really going on, I know that with some people, it wouldn’t even matter. My daughter is not for their amusement! She’s a two year old child and doesn’t deserve being made fun of, especially by adults!
There are things, however, that I wish I knew how to control better. There are times when I just want to sit down, relax with the kids, maybe color or draw something. Bella can not sit still. She is constantly moving. Her attention span is very fleeting and she can’t stick to one thing for more than a few minutes. There are times when I wish she would just sit down with me, curl up and let me read her a story, like Rayne does. There are a lot of things I wish she would do with me, but she just can’t. It does make me sad, but it’s just another thing we’ve got to work on. I am determined to find something that Bella and I can do together that isn’t school related.
All these things might sound like typical two-year-old behaviors, but it’s like a two year old times a thousand. She is unable to entertain herself, focus for long periods of time and most of the things she finds fun are rather destructive. Sometimes it feels like my entire day is made up of cleaning up after Bella. While I’m cleaning up one mess, she’s busy making another one.
I hate that two minutes after I give her a bath, I catch her pouring juice in her hair and have to give her another one. I feel bad for Rayne when she has to come down and get us up at two in the morning because Bella isn’t sleeping and keeps waking her up. I hate that I can turn my back for a minute and she’s managed to get her diaper off. I hate scrubbing poop out of my carpet (and giving her another bath).
Our safe room (livingroom) where Bella spends a lot of her time is relatively empty. There is a couch, an area rub and a TV in there and she still manages to find something to mess with. Unzipping the cushions and pulling the stuffing out, pulling up the rug… trying to climb on to the TV.
She’s really smart, which is also one of our biggest issues right now. No lock, latch or child safety contraption can hold her back. She figures out how to unhook, unlatch and open all of them in very little time. She’s recently learned to open the big doors, so we’ve had to install locks on the inside of the doors as well.
Bella is also a “runner” so her being able to get out the door is dangerous. Also, when we take our walks, we’ve had to resort to putting her on a kid “leash”, which of course has opened up for more mockery. Her safety comes first, so it doesn’t matter to us, but for some reason, a lot of people have a lot to say about it.
Generally, anything the ends up in Bella’s hands will most likely be spilled, poured out, torn, ripped, broken or somehow mangled.
I know that some of this might sound like I am not watching her well enough, but trust me, I watch the kid like a hawk and it seems the second I turn my back, she’s found something to get into. Something to climb on, something to put in her mouth.
So, you take Bella and add in an almost four year old who’s going through a “clingy look at me” phase and an 8 month old who’s learning to crawl, not to mention the everyday house work and you get one hectic schedule to keep.
During the day it does get a little rough, but when Cy gets home from work, he takes over and give me some time to myself. My mother is a godsend and comes over practically everyday to help me out a little bit.
I didn’t write this for people to feel sorry for me… in fact, I think I wanted to write this as a way to really admit to myself that it’s okay to find some of it “drive me crazy” side of things. I know that this is my life and I can accept that. I’m her mother and it’s my job.
With every new issue that comes up, all we can do is find a way to make our lives a little easier every day.
