I’ve been asked a lot if I could explain what a typical day is like here in my house. I always reply with “it depends on what day it is”. While that sounds like a humorous way to pass off an uncomfortable question, I’m actually being quite serious. There are some days when someone from the outside could come over and not really know that anything was different in my house. Then there are days when they would swear that the spawn of Satan has rented out my spare room. I say that all lovingly, but there are those days when we find our heads bobbing just above the water. We try to stay positive, but sometimes, there just is no silver lining. Sometimes, it just downright sucks.
On A Good Day
Bella is the epitome of a perfect child. Despite the fact that even on her best days, she’s still unable to be still. On those days, she’ll calmly pace around the living room. She may even sit on the couch for a few minutes at a time. Those are the days when she wakes up with a big smile on her face, she comes over to us (on her own) and she’ll wrap her tiny arms around our legs. She’ll eat! She’ll dance to every second of music she hears and besides the random bouts of incoherent “talking”, you won’t hear a peep out of her. She’s quite loving and will come over to us many times a day to kiss us or hug us and she’s less destructive than normal. We have these types of days maybe once a week. The rest of the days are between what we’d call a Good Day and a Bad Day.
The worst days are just plain ugly.
On A Bad Day
Bella will wake up in an “off” mood. You can tell that the day isn’t going to be the way you’d like it. How bad the day is all depends on her. When we start out with these kinds of days, we like to put her in a Lavender Epsom Salt bath. The lavender has a calming effect and it really does seem to work for her. On these types of days, she’ll pace the living room, but she’ll be much more agitated. She’ll seem anxious and nervous and we’ve noticed that she stims a lot more. Constant spinning, finger flicking, rocking and toe walking. She’ll be more sensitive to sounds and bright lights and you can just tell that she’s heading for sensory overload. We’ll take her into a quiet, darker room and sometimes just lay down with her. The quiet helps. I’ll do deep tissue massage to help her calm down and we make sure that she stays hydrated because during these anxious times, she refuses to eat. These are the days that make me feel bad for many reasons. I think I still blame myself for Bella’s condition. I also feel torn between being there for my other children and knowing that I have to watch Bella constantly in order to keep her safe. I feel that the other two kids do get time taken from them because Bella needs so much attention. Then, I see Rayne and Bella playing together and I realize that if Rayne doesn’t seem too upset by it, then I shouldn’t beat myself up. For a three and a half year old, Rayne seems wise beyond her years and almost seems to understand that Mommy has to help Bella a lot. Despite the constant movement and pacing all day, she still seems to have trouble sleeping at night. It takes a long time for her to fall asleep, and she never stays asleep longer than a couple hours. These days are closest to what we could call “normal” days.
On the REALLY bad days, dubbed “Ugly Days”, nothing is safe. Couch cushions will be removed, area rugs over turned. Food will fly and drinks will spill. Books will tear, paper will rip, magazines will becomes two halves of a whole. There will be times when all you want to do is sit down and enjoy a cup of coffee, but she will want to use you as a jungle gym, and no matter how many times you set her back on the floor, she will relentlessly climb right back up. Bella will move, all the time, either in place or all around. She will walk circles around whatever is in the middle of the room. She will pinch herself, every now and then, I guess as a way of proving to herself that she IS there. She will climb on everything and knock whatever is in her way down. If you have something that she wants, she will try to take it. If you deflect her advances, she will get very frustrated. These really bad days, we get very little affection from her, no eye contact and her verbalization is frantic and loud. She’ll fight being touched, dressed, fed and held.
These are the days, I feel like crying. For her, for me, for the other kids and sometimes even for my neighbors who I’m sure can hear her at night when she’s refusing to go to bed.
These are the days when, as a mother, I am at a loss of what to do. When Rayne would cry, I would pick her up, hold her, rock her and tickle her tears away. With Bella, none of that helps and in some cases makes it worse.
I try my best not to feel sorry for myself. All I ever wanted was a good man to spend my life with and kids. I have that now. Having a child with Autism isn’t exactly something you think about when you’re thinking about your future self, but this is the hand I was dealt. To say that I don’t feel overwhelmed sometimes would be a lie. I do. I’m sure Cy does too, but to be honest, we don’t really have time to feel sorry for ourselves. If we did that, I could pretty much guarantee that in that time, Bella would make her way to the top of the entertainment center and toss all the BluRays on the floor. (Yes, that’s happened before. We moved the coffee table out of the room.)
The other big issue that we have with Bella’s disciplinary problems is that she’s so freaking smart! It took her less than a day to learn how to open the baby gate. Two days to learn that if she tossed all the pillows and blankets on the floor, she could climb out of the crib and drop to the floor unharmed. Three HOURS to figure out which way to stack up all her toys so she could climb up them to the top of… whatever she was trying to climb to. She watched me unhook her carseat buckle ONCE, and knew how to unbuckle it. Every latch, hook, clip, buckle and snap has been modified to be “Bella Proof”.
So, how do you discipline an autistic toddler?
Well… I guess that’s something to write about next time.
