We were so hopeful a few weeks ago. Janey was off all medication, and we really saw no change from when she was on it. She was smiling a lot, and recovering slowly from her surgery and hospitalization. But starting about a week ago, things went quite strongly downhill.
The screaming has been the toughest thing. Janey has always screamed off and on, but lately, it's a different kind of setup. Things will seem calm for a few minutes, then she will ask for something she wants. If I can't give it to her that very instant, she screams---a loud, piercing, hysterical scream. Then she bites her arm, badly. Then, sometimes, she tries to hit me, or anyone else who is around.
In looking for positives, I must say these episodes are pretty quick. They are super intense, but fast. They start too quickly for me to start giving positive reinforcement for not getting upset---sometimes she starts screaming as soon as she asks the question, if she knows the answer is no. And if the fits go on very long, it's been working lately to say "Can you try to calm down?" and just waiting. She does try, and she does calm down. For a few minutes. Until the next fit.
The screaming has essentially trapped us in the house. We can't take Janey anyplace at all. Tonight, Tony tried taking her to the grocery store, someplace he's taken her for many years. It was always a positive routine for the two of them. However, after they had picked out just a few items, Janey did her extreme screaming and arm biting. They had to leave. If you are thinking "Oh, lots of kids have tantrums in stores. You just have to wait them out!" then you have never seen Janey's screams. They are the screams of nightmares, and the arm biting is an added touch of horror. Every single eye in anyplace we are turns to us, and if we stay, it will only happen again a few minutes later.
Yesterday was one of the longest days I've ever had. Tony and both boys were at work. Janey was not happy. I would say she had a screaming episode about every 10 minutes, all day long. I tried everything. I tried reading to her, coloring with her, singing to her, giving her a shower, playing toys with her, sitting with her watching TV, cuddling her, listening to music with her---nothing pleased her. She wanted to "Go to Maryellen's house!" She loves Maryellen, but if we actually go there, she is happy for about 5 minutes. And then, when we leave, on the way home, she again says "Go to Maryellen's house!" It's just something to ask for. It's not really what she wants.
Janey hasn't been to school for a long time, since late May. That's probably one of her longest stretches in years without school. Summer school starts Monday. I am hopeful it will help, but not confident, really.
We started the medication again today. We didn't want to, but the intensity of Janey's unhappiness told us that what we wanted wasn't really the issue here.
It is getting harder and harder lately. I have to admit it. I sometimes truly feel scared, and I know I feel depressed. I do see a therapist, but I haven't been able to go since Janey got sick---there is no-one to watch her. However, although I certainly like having someone to talk to, it isn't going to change the situation any. I am more and more aware there is not any help but school. It doesn't exist, not for kids like Janey.
I will mine for positive at the end here. I cut Janey's hair out of desperation the other day, because after the long hospital stay it was quite tangled and she wasn't happy with brushing. I think it came out not badly for a completely non-professional haircut. Now a quick brush is all she needs. It's little tiny things like that that are all we can really do to make our lives easier. So here's a picture of Janey's new 'do!
2 comments:
Janey is a gorgeous and a beautiful angel from Heaven. I also have an angel from the same place, a girl, 10 years old, with autism, who screams so hard to the point I have vertigo every day. I have an older son who is typical, so living a typical life and not at all typical life at the same time has been emotionally too challenging. She says she loves us very much but when she is with us, everything bothers her, that she is suffering. It seems the world is fascinating to her and she wants to live it, but when she actually tries, she cannot handle the reality of fear, anxiety, obsession and irritability having to live 'normal'. No medication has been very helpful and I am scared to use them when they bring so much side effect and at the same time, I am scared to not use them. A day seems very long, and the angel is only 10 years old. I wish time would fly so she became old very soon and I stayed young, only to be able to take care of her. Your writings reflect so much what we are deep down and what we are going through everyday. Please keep on writing, I am praying all our angels will feel a little more peace in this world.
My daughter does her share of screaming but the trigger is usually easy to identify. She is tired and cannot go to bed alone but she remains awake yelling or playing on an Ipad. She wants my wife to sleep at the end of the bed like a dog. Later she wakes up demanding some food or wanting to play.
Lately, my daughter does a lot of inappropriate laughing at nothing so it beats screaming but it reminds of every movie I've seen about mental hospitals with somebody laughing all the time. I've had some back problems due to stupid fall from a broken hammock and my daughter wants to sit on my back because she knows it will get my attention. I've heard many parents refer to their kids with autism as "innocent" but my daughter has a devious streak in her which at least shows some independence.
"The screaming has essentially trapped us in the house." Yes, it the closest thing to being under house arrest that I've ever faced but there's no end to the probation period.
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