Janey is not enjoying this 3rd snow day and 5th day off in a row from school. She is very much not enjoying it, to the extent she has spent a huge portion of the day screaming at the top of her lungs. This is despite my decision to put every ounce of energy into engaging her and keeping her happy all day, after yesterday being a bit hellish. That is not working. Right now I begged Freddy to take her upstairs to my brother-in-law's apartment for 15 minutes, so I didn't go insane.
I did keep her happy for minutes here and there. We played a game where she picked if I hugged her, kissed her, or said what I call "nice words" to her, and she had to pick a finger out of three to show me which she wanted. She caught on right away, and got lots of hugs and nice words. Later, we did workbooks. I decided to try just doing the workbooks myself and having her observe, and talking constantly about what I was doing. It worked much better than trying to get her to do them, and I gave her a marker to hold and at times, she jumped in and did parts of them. Someone mentioned here about error-free learning, and I haven't researched it yet, but that is what I was thinking of them. Janey learns so much from videos, and I figure me doing something live might teach her even more. It kept us sane for a while, anyway. I'm pretty good at preschool workbooks, if I do say so myself.
Overall, though, it has been a day of screaming. At one point, she was screaming "I can't take this any more!" which was heartbreaking to hear, although I think it was delayed echolalia she possibly could have heard from me, which is not something I felt proud of. But there does come a point of just not being able to take it. Thankfully, I have Tony and I have the boys. And usually, I have school. Or I can take her someplace, which is not even very possible now with snowbanks covering even a lot of parking lots.
I feel like a failure after a day like today. I think about some of the blogs I read where mothers seem to have eternal patience with their autistic kids, and whose kids seem endearingly quirky instead of completely impossible to understand and comfort. Of course, Janey isn't always that way, but it's always a minute away from being that way. I wish I could video the screaming, but I worry that if anyone saw it, they would think I was a highly unsuitable mother for taping her instead of somehow helping her, and they would not realize I'd spent the last many hours trying desperately to get her happy, and that nothing I can do makes a bit of difference, and that I'd literally do anything that would make her happier, if I knew what it was.
My 15 minutes are probably almost over. Tomorrow will be better.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
5 comments:
You are not a failure. You are trying your best under some really difficult circumstances :( …don't forget, what people blog is not always the truth. Or maybe they are "modified" truths; no one is perfect and it's terribly disingenuous when people portray themselves as such.
So this sounds pretty random, but what happens if you join in on the screaming? If you were to be able to do a "primal scream" of sorts, would Janey stop? Would she get scared? I'm curious because I'm wondering if she would think of you empathizing with her. Maybe she would stop because she is seeing you do something different?
I used to encourage my daughter to scream if she needed to, but she needed to find a pillow and a room. This took a long time, but I guess it showed my girl that disappointment and frustration is normal? Does Janey need to feel that her frustration is shared by someone?
Could you (over-dramatically) put your hands over your ears while Janey is screaming? Would her visualizing your unhappiness help her feel connected in some way? I'm guessing maybe she is so unhappy because she misses her routines?
I used to have a box (still do :)) for my kids for toys that were for other's birthdays. We didn't get invited to a lot of birthday parties, but I liked having things on hand, just in case. Could you create a mini-"treasure box" for Janey for hard days like the ones you have been having? So special prizes, activities can only be done on those days where you are out of ideas or when she's particularly unhappy?
I'm just throwing stuff out there for consideration. I wish I had a way to help you :(!
You are definitely not a failure. If you think that maybe I'm one of those moms with indefinite patience... Well the truth is, Sophie is easy. She is easy compared to other toddlers and she is super easy compared to most autistic toddlers. I personally think you are a wonderful mom.
I don't have any words of advice :( one of my first experiences with autism was a little boy, son of a family friend. He loved school so much, on days it was cancelled he would stand on his curb with his backpack until 4, waiting for the bus :(. They hate when their routine is broken.
I know that scream...and I know your frustration. Here's a thought. Is she overstimulated? Too many activities but no routine (like school would have)? Does she have any self-soothing techniques? On a whim, I bought a small vibrating massager (the ones that are always at the dept store counter) for Lindsey for Christmas. I've had some success stopping her tantrums by putting it on her back, head, and even her face (which she likes). It must trigger her endorphins and calms her down. Sometimes deep pressure works. I've actually lain down on top of her with my full body weight (we are nearly the same size), and she calmed down. Mini trampoline or indoor swing? These are ideas from OT. Just throwing ideas at you because I know how terrible it is to listen to that painful wailing...it's like she is being tortured.
Thanks to all of you. It's great to have this as a place to turn for ideas and sympathy! Tony has taken Janey out to Burger King now, so I have some quiet moments. I've been thinking what a scary time this must be for Janey. First Daddy goes away for a week, which she never gets, and then the school routine is suddenly to her inexplicably changed, and we are stuck in the house, and we are all home...it just makes no sense to her at all, I am sure. It's no wonder she screams all day.
I think about those modified truths a lot! I wasn't thinking of ANY of you when writing that---anyone who I read back and forth with! Those blogs that make life with autism sound like an interesting little twist on normal, but more fun and more special, get usually one read from me, but then they stick in my head!
The idea of encouraging Janey to scream in another room and into a pillow is something we've tried. We can't much have her in a different room than us, but she has at times seemed to get the pillow a little. Not today! A few times too, in desperation, we've joined in the screaming, which sometimes stops her for a second or two, but in the long run seems to get her going more! I'm going to try the hands over my ears method for sure! We have a bit of a treasure box---bags of toys I buy at thrift stores---and Buzz Lightyear bought me about 5 minutes of scream free time today, which is no small thing!
I'm going to look for one of the vibrating things for Janey. One thing that worked for a while today was just what you said, Michelle---deep pressure! I wrapped her in tons of blankets and said I was going to be a musher machine, and put pressure on her. She calmed down for about 10 minutes for that. I also tried a massage with my limited massage skills, which worked for a bit too.
The scream really is like she's being tortured. It's horrible. It feeds on itself, I know---I'm sure Janey doesn't like to hear herself making that sound, and it also causes us to be in despair, which she picks up on, and it all just becomes a vicious circle. It's good to have a lot of ideas, even if each one just works for a bit, because linked together they get us through the day. And it's VERY GOOD there is school tomorrow.
You are an amazing mother. Try to remember that every day. I have two grown sons. Not autistic. And yet I still had days where I was frustrated and thought I badly needed a break. That seems so silly to me now. Hang in there. I hope tomorrow is a better day.
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