The last few days have been building up to this award-winning night. Janey has been crying off and on, having fairly rough nights, crying in the car and in the evening as I wrote about yesterday. Yesterday morning, she was tough but not impossible. I managed to grocery shop with her, and although she wasn't happy as I dropped her off at school, she wasn't that bad, relatively.
I got a call about 3:15 from Janey's regular ed teacher that she was having a rough day and we might want to pick her up early from afterschool. The teacher was great---she said it wasn't an emergency and Janey might be fine, but she was just having a tough time. Tony had planned to come home early and get Janey to give me a break from the car crying, so we decided the minute he got home, he'd head to get her, resulting in her being picked up about 45 minutes early.
When Tony got to the school, Janey was very happy, as she was outside running around. But he said before they even reached the door of the school, she started crying. And she screamed all the way home in the car. Although Tony certainly had believed me as to how bad the car crying was, he got to live it, and he was shaken. He's the world's best driver, unlike me, but it was still very hard for him to drive with the loud screaming.
I heard Janey in the driveway the minute they got home. She screamed as they got out of the car, she screamed as they came into the house, she kept on screaming. She screamed for about three hours straight. Now, I don't mean mild crying or whining or even loud crying. I mean screaming, the kind of screaming that would not be at all out of place in a horror movie. Absolute all out no holds barred screaming. So loud that talking was impossible.
While she screamed, she ate. She ate everything Tony cooked in a vain attempt to calm her down. She barely stopped screaming while swallowing. Once in a while, she spiced up the screaming with a screamed phrase. Mostly, it was "You've got to stop that!" which Tony had said at one point in the car.
At one point, we asked ourselves whether we should go to the emergency room. It was that bad. And we might have, had we thought it would do a single bit of good. But it wouldn't have. There isn't anything they could do that we couldn't do. That is the sorry state of mental health services for children in this country. Here's an article which was in today's paper that addresses that somewhat--- link. If Janey had been physically sick, we would have had access to the best care in the world, minutes away. But for her kind of sick, mentally sick, there is no care.
After hours, Janey screamed her way to sleep. She had calmed down a tiny, tiny amount before that. She is still asleep, and I hope with the strongest hope possible today is better.
So---what caused this? That is something we will probably never know. Janey can't tell us. I doubt she knows herself. My theories? Very few. One thing that has been in common the last few nights is that at some point during the tough night, Janey urinated a huge amount. I think she might be holding her urine at school, not wanting to wet herself. Anyone would take her to the bathroom if she asked, and they do take her regularly on a schedule, but when she isn't ready to go at those times and wants to go another time, she would have to ask, and with the relative lack of toilet training skills and talking skills, that isn't something that she does easily. Two of the nights, she used the potty, last night, she wet in her pullup. I really don't know if that's it. She could be feeling overwhelmed about something. She could be hearing sounds in her head. She could be on the verge of a breakthrough, as was commented here yesterday. She could be physically sick, although I don't think so. She could be any number of millions of things she has no words to tell us.
It breaks my heart to have Janey so sad. It also breaks my heart that the boys were not able to have any semblance of normal family life last night. William had his first college interview. That would be a great thing to be able to talk to him about, to celebrate. But we heard little bits and pieces between the screams. That isn't fair to William. But not much about this whole gig is fair. Not to us, and not to Janey. Not to anyone.
5 comments:
I'm so sorry to hear that :( it sounds very hard. On your last post somebody advised a "crying diary", have you ever thought of that? Its totally different but we did one when Sophie had persistant stomach problems. She was already on gluten, dairy free, but they still continued, intermittenly. Thanks to our food diary we finally realized she reacted to tangerines. Every time. You also mentioned she had nutella.. Could that set her off? Sophie is very sensitive to cocoa as well. Just some ideas, but mostly hugs... I can't imagine how awful that was.
I had thought of the Nutella! Janey is extremely sensitive to anything with caffeine, including chocolate. It's the one food issue we've consistently seen with her. This latest episode started a little before the Nutella, and is lasting quite a while after it, but it's still something to think about. That's something with the tangerines! Do other citrus fruits bother her, or just those? I had also thought it might be constipation, but that is not the case this time. I am going to go back and try to recreate through this blog what has caused other spells like this. Some of them are seasonal, but January isn't usually the season, or at least that's how I'm remembering it right now! Thanks for the hugs and support---they help A VERY LOT!
Agreed not fair at all.
On the subject of sleep, do you give Janey any medications? The Dev Ped who diagnosed Willow recommended we give her melatonin to help her sleep. We haven't as of yet, but I'm curious if other people have had experience with it. I know AD gives it to his son and says it works wonders. Also, have you ever tried/heard of a weighted blanket? I've also heard that these work wonders. I've been looking at one for Willow but they are pretty pricey. I'll bite the bullet if I'm relatively sure it will benefit Willow, but I still need to get more info. I've read lots of good reviews on amazon saying that it helps kids sleep. Don't know if Janey is into the deep pressure & sensory stuff, but Willow is.
This is totally off topic so I apologize, but I just started thinking about it when I was reading this post.
As for the actual screaming, I'm wondering if it could be triggered by anxiety? Has Janey received any other diagnoses in addition to autism? I know anxiety is common in individuals with ASD.
im re-reading this after last night having been awoken by my daughter screaming and crying for no apparent reason, but my daughter is 16 mos, dis this happen to Janey as early as this? if not when did she first start having restless nights like these?
I'm very late in answering you, House of D! Janey didn't really have screaming nights like this until she was 3 or so, if you don't count her colic, which was pretty bad. She was colicky until about 3 months---not as colicky as her brother Freddy had been (and Freddy is completely neurologically typical). Even from age 3 to about 5, sleep was usually not a terrible issue. The sleep has gotten tougher as she has gotten older.
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