Janey had a great day at school on Friday. Today, she went to the "Treat House", the respite house, and went apple picking. She was cheerful when we dropped her off and when Tony picked her up, and he didn't hear any reports that she was upset there. However, a few minutes after getting in the car, she started to cry. She cried all the way home, and kept right on crying. She cried, screamed and cried, from 4 - 6:30. As of this writing, she's falling sleep.
I wish I could truly describe what spells like this are like to someone who hasn't seen one. It's hysterical crying, the crying of despair. She hears what we say, based on an occasional echolalia word, but nothing we say helps. Nothing we do helps. We have absolutely no way of knowing what's wrong. She doesn't say. We can guess, and today's guess was that she was tired, as her sleep has been awful. Last night, she was up from about 1 am on. Not crying, but awake. For much of that time, she lay next to me, so wired that she didn't even really rest her head on the pillow. And then she goes off, apple picks, comes home, and of course she is tired. But she doesn't sleep, and that doesn't always cause crying. Is she hungry? We offer her food, she might eat a bite or two, but then she continues the crying. Her face is red, tears stream down. She is desperately unhappy, and I can't help. No-one can help.
At one point Tony took Janey in the back room to give me a mental break from the crying. Janey screamed for me, and Tony said she needed to calm down first. She got control for a second, said "I feel better" and he let her come to me. Within seconds of leaving the back room, she was screaming and crying again.
I think the source of her sadness is internal. But she doesn't have the words to explain that to us, or if it's not internal, to explain what makes her sad. The combination of retardation and autism and probably a mood disorder leads to a situation without a solution, or one that I can find.
I am glad school is happier for her, but of course that is also hard for me. I can't recreate school at home. Home should be a happy place for her, but I feel like home is where she goes to fall apart.
Lately I am feeling out of ideas. The crying, the lack of sleep---it's worn me down. I am so happy school has started, but I feel guilty in that happiness, because I am sure it's almost more about just getting a break from Janey than being glad she's learning.
What do you do, when you've run out of ideas? I don't know. I've read some scary, awful ways people have dealt with that feeling lately. Don't worry. I would not ever, ever go there. But more and more, I am starting to see that long term, Janey might need more help than we can give her, as a family. Getting that help is not easy. It's very, very hard. But so is the way things are right now. I've always gone with hope as my answer---hope that tomorrow, Janey will be happier, that she'll be back to one of the delightful stages where life with her is wonderful. Tonight, I'm having trouble drumming up that hope. I'm down to hoping FOR hope to come back, tomorrow or soon.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
5 comments:
SO many hugs
Knowing our child is in some emotional pain and not knowing why or what to do breaks our hearts
Hugs Suzanne!
Is it possible she might be having meltdowns? My oldest son who has sensory processing disorder for sure would have horrible meltdowns after busy days such as school, outings etc. he also often seemed happy there, and I believe he was. I also think that his nervous system became overloaded even with positive sensations and a meltdown would ensue.
In his case there was nothing we could "do". It just needed to pour out. He literally needed to cave in his room, on the bed and often meltdown. We taught him to say "I need alone time". It gradually helped. In his case interacting with him or trying to calm him prolonged the meltdown. Against our instincts what worked was to leave him sobbing in his room alone, quietly and without interruptions.
I'm sorry you are dealing with this now.
That's a great insight. That very well might be it. School started, then right away the next day she's off to the "treat house", and she by all reports does so well at both, and then---complete falling apart. And it's very possible we might be extending it by constantly trying to figure it out. Maybe she just needs to cry for a while. It's interesting that it happened to your son even when things were positive. I've certainly felt that, after some great days---if I wasn't just left alone afterward and able to zone out, I'd feel like crying. I'm going to keep this in mind the next time. Thankfully, after waking up crying, right now Janey is happy. The sound of not crying is the most wonderful sound I could imagine.
Oh Suzy! My heart goes out to you--it makes me ache for you just thinking of how sad, frustrated, and exhausted you must feel. First of all, and I know this is easier said than done, you must not take it personally--you must realize that maybe the crying at home is simply because that's where she feels most free and safe to express what she's truly feelings. Sure would help if she could just express those feelings in words though wouldn't it? The other day, when Tony took her away from you until she could control herself--then let her come back to you when she "fel better" but she started crying again--what did you and Tony do then? I hope he took her right back out again. Maybe that's one place to start her learning that, if it's you that she wants to be around, then she needs to at least try to express her feelings in a different way when she's with you. I guess I'm just grasping at straws to maybe try to figure out if there is some kind of reward (strange as it seems) for her to cry when she's around you. I'm also wondering if the crying/screaming behaviors have been discussed thoroughly with her psychiatrist or a behavior specialist of some kind (probably at school). Certainly they must have been through this type of behavior before, and should have some suggestions to try. Is she still taking the new medication? I know I'm just grasping at straws, as I'm sure you do, but I keep thinking there MUST be some answers out there!!
One thought I had is that you could teach Janey that she has three opportunities to tell you what is wrong, by answering three questions: Are you hurt? Are you hungry? Do you need snuggling? If she says no to all three of these she would be told that you are going to go about your day and just let her cry (and I know it's easier said than done, but then just let her be unless she is hurting herself) until she can come to you and vocalize what is wrong. It may be nothing, a 'melt-down', in which case she really does need to just cry. I used to do that a lot, remember? When she is 'done', I think it is good to acknowledge that she was sad about something and tell her you understand that she needed to cry and that's 'ok' but you are happy she is not crying anymore. Don't tell her it's ok while it is happening, just let it happen. Just my thoughts, that came to me when I was hiking yesterday!
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