Raising a daughter with autism is a lot like riding a roller coaster. One minute you’re climbing high, watching your child make huge gains and seeing nothing but the blue sky above you when it comes to success. Then the next minute you’re hurtling downwards, out of control as you watch the ground come at you quickly, closing your eyes to block out your fear of all that progress crashing down with you, but quietly wishing you’d hurry up and hit bottom already. Then suddenly you pull up again, grateful to be released from the free-fall, wondering if you can stomach the next curve.
The past few weeks have been rough for Cordy, and as a result rough for us as well. After coming off the high of finding out that our daughter is excelling in academics and hearing so much praise from her teachers, we’re seeing a totally different child at home.
It’s hard for me to put into words what’s different about her. She’s…moody. The slightest verbal correction sends her either into a fit about how she’ll never get to do [insert activity she was doing] ever again, or sometimes a panic attack that we’ll hit her or send her to jail for some minor offense. (For the record, we don’t hit her. Just wanted to make that clear up front.)
She’s always been someone who sees only black and white with most issues, but lately everything has been even blacker and whiter. There is only one way to do things, and you can’t tell her otherwise. Any change in direction and suddenly it’s like the world is splitting apart at the seams.
She’s stopped sleeping again. She goes to bed at her normal time, but when I leave for work I’ll often still hear her talking in her room. On nights when I’m home, I sometimes wake up at 2am or 3am and still hear her talking to herself in her room. And yet she still bounds out of her room at 6:15am. Occasionally she’ll crash hard in the middle of the day – about a month ago there was a tornado warning while she was at school, and apparently while they crouched in the school hallway, sirens blaring, she fell asleep. But there seems to be no pattern to her sleep cycles.
Cordy has also started destructive behaviors – she’s unraveling socks at an alarming rate now. She insists on wearing socks at all times, but she has been putting holes in at least a few every week, sometimes completely unraveling the sock down to the bottom of the cuff. She’s also scratching herself raw at times and picking at her lips, sometimes until they bleed.
What bothers me the most is that Cordy wants to be alone even more lately. She comes home from school and usually within the first 15 minutes, she’s either absorbed in an activity book, or she disappears to another room to “make up her stories.” She likes to create stories, but she insists on making them in private and then she doesn’t like to share them. If anyone should come into the room, she gets upset and demands they leave. Peeking in on her, I often find her pacing back and forth, flapping her hands and talking to herself, usually quoting lines from TV shows. This is often what she’s doing in the middle of the night, too.
Sometimes I get so frustrated that she won’t let me into her world. If I ask her how her day went at school, she responds, “Mom, I don’t want to talk. I just want to watch TV.” If I ask her how she’s feeling, she whines and tries to avoid me. When I ask her to tell me one of her stories, she tells me that she doesn’t like to tell them to anyone. I feel like I can’t get through to her, and I sometimes worry that feeling will create a divide between us. I know I shouldn’t take it personally, but when your 6 year old keeps telling you to leave her alone, and you go an entire night in different rooms, it starts to have an effect.
Many of these behaviors have been with her for some time, but over the past few weeks they’ve intensified to the point that sometimes she’s incredibly difficult to live with. I can’t pinpoint what’s causing these changes, either, which leaves me feeling helpless. It’s quite possible the overstimulation of the holidays is affecting her, but I don’t know how to tone it down any more to keep her happy. Something at school could be affecting her, too – she never seems as happy when she gets off the bus anymore.
I really had no point to this post. I just needed to get this off my chest and admit that while I love my daughter, I’m having a hard time dealing with her lately. She was so happy earlier this year and now I feel like she’s morphed into some sullen emo teenager who is angry that we never let her do what she wants and never leave her alone enough. I want my smiling little girl back (I have tears in my eyes as I write that because I know what a little ray of sunshine she has been) and I want her to be at least a little more interested in her family.
I understand social interaction is hard for Cordy – such is the nature of autism – but I refuse to let autism take her away from me. I’ve been crazy busy with work, but I’ll somehow find the time to do more for her if needed. But what is there to do? I have no idea what steps to take next.
Back to that roller coaster image, since I have no idea how to even end this stream of consciousness: my eyes are currently squeezed shut tight and I’m hoping this is just a small dip in the ride and soon we’ll be on that upward climb again. Because right now the ground is a little too close for my liking.