Janey had a pretty good day today. It was the first day of vacation week, and we have been cooped up a bit due to more snow. Today, she got out a little, just to go to the store with Tony, and we gave her a lot of attention, and she seemed pretty cheerful. Then, around bedtime, all hell broke loose.
I don't know what set Janey off---I rarely know. I was knitting and she was right near me, watching some YouTube videos. Suddenly, she started to scream, and came rushing at me in anger or fury or who knows what. I held her and tried to calm her down, speaking softly and slowly and trying to comfort her, but it was no use. Tony was in the bathroom shaving to go to a wake, and lately she has gotten very upset any time Daddy is not around, so I took her in to see him. Something set her off again there, after her briefly calming down, and she banged her head against my cheek bone over and over and over as I tried to move her away. She was screaming a loud and intense scream. Tony picked her up and tried hard also to calm her down, but nothing was working. Finally she settled enough so I could get her into bed and lie down next to her. She was still mad, biting the blankets and pillow and yelling now and then. I talked quietly and rubbed her back and after maybe 15 minutes, she went to sleep.
I try hard to figure out what brings on these episodes of rage. They are rarer than the crying, but they happen now and then, and they are scary---scary for her, I am sure, and scary for us. I think she was tired, and perhaps saw something in the video she was watching that upset her (it was a Baby Einstein video, so it's hard to picture what that could be). It can be a small thing that sets her off, but then the screaming and rage and our attempts to calm her all feed on themselves and it is like what I've heard about a tornado forming---the rage itself creates the condition for more rage, stronger rage.
Winter is hard for Janey. She needs time outside. Vacations are hard too, and snow days, and days with everyone at home. Being tired is hard for her. A lot of things are hard for her. I try hard to understand her. But sometimes, when I'm being smashed in the face, I just wish she would not be that way. I feel like I'm doing everything I can, and she is not. That's an unfair thing to think. She is a child, she is autistic, she has learning challenges, she is not able to understand the world around her or her feelings or how to control them. But being her mother is tough. Tougher some days than others, and today is one of those days.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
4 comments:
I'm listening. I hope tomorrow is better.
Those kinds of days are so hard. I hope that tomorrow is better too - thinking of you guys.
I do hope things are better by now.
I was wondering if among the many possible aggravating factors could be the sounds that only the young people can hear, for example an occasional high-pitched sound coming from a TV or a computer. I don't know, just a thought.
I have been lurking around here for quite a while, until I felt a friendly kick in my butt, coming from the direction of Sophie's Trains (Hello!).
We have a son, who also has tremendous stamina not to do things he doesn't want to and this blog has been my favorite. Should have been writing sooner.
Do not let those owls at the college put you down in any way!
It is great to meet you! Thanks for reading and for your encouragement! You might be onto something with the sounds. About a year ago I realized that often Janey's unexplained moods were the results of sounds she heard, and I started identifying them for her---"that's an ambulance! that's trucks on the street!" and it seemed to help a lot, but those are the sounds that I can hear, and I'm pretty sure she does hear ones I can't. I'm going to try just asking her if she's hearing a sound when she gets upset. Not that she'll answer, probably, but she might be surprised I guessed it! Again, terrific to meet you!
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