Sunday, July 28, 2013

Warning! No Silver Lining!

If you like to read heartwarming accounts, or tales of positive action and good results and special moments, you might want to skip this entry.  I'm sure I'll get back to that, but for now, I haven't got that in me.

I wrote optimistically on Friday about trying a new way to deal with Janey's screaming.  I felt enthused, and we saw some early good results from ignoring the screaming.  I woke Saturday determined to work on that method.  However, Janey didn't have the same determination.

We all can ignore screaming.  But Janey doesn't like to be ignored, and so as soon as she figured out what game we were playing, she upped her own game a notch.  We can ignore screaming, but it's a lot harder to ignore screaming when it's combined with grabbing various objects and flinging them around violently, or with biting her own arm so hard it leaves marks, or with smashing into her brother as hard as she can, repeatedly, or with taking any liquid that is available and spilling it on the ground.  Or even just sticking to the basic screaming, but keeping it up at incredibly loud volumes for an hour, to the point that one gets quite concerned that anyone hearing her would assume she's being horribly injured.  Or when, if you attempt to take her in the car to diffuse things, she rolls down the windows, throws things out the windows, thrashes around so much it's impossible to drive, hits anyone in the back seat with her and makes so much noise that passerbys are startled.  Or turns off the TV or computer someone is trying to watch, over and over and over and over.  Or strips off her clothes literally hundreds of times a day.  That was yesterday.

There were little, tiny moments in between the horrible moments when Janey appeared perfectly calm and happy, when she sang or played outside or was sweet to us.  But it's hard to relax and enjoy that when any hug can suddenly turn into fury, when from one second to the next happy talk can become deranged sounding screaming.

When Janey is like this, it's not living.  It's surviving.  We are shell-shocked.  We look at each other and just wonder how we will make it to night.  And when we slip and let ourselves think about the future---there doesn't feel like a future.  There is no end in sight, ever.  There is only Janey getting bigger, getting to the point where she will be stronger and we will be weaker.

I'm not going to put a silver lining here.  I am going to say that it isn't always like this.  If you read back in this blog, sometimes there are weeks or even months when Janey is delightful, wonderful, when the fact that she is autistic and intellectually disabled is not a big deal, because she is simply Janey and we are delighting in the Janey she is.  I have hope that she will cycle back to that.  That is how we do it, when people ask us how we do it.  We hope.

11 comments:

Laura Wilson said...

I don't know. But is it possible that this is a necessary part of the new strategy you're working on? Is it possible that Janey is testing you to see if she can beat you at it? And if so, perhaps you DO need to just stick doggedly to the plan. However, it does seem a dilemma when she ups the ante to include very possibly dangerous actions.

D. T. Tallulah said...

I am exhausted and despairing just reading about what you are all going through. Sending you all peace and strength.

Antti said...

I hope and believe that Janey continues to develop, so that little by little she finds every more often some other way to control the world around her than screaming. I am sure you do what can be done to reinforce this. I wish you strength and courage.

Sophie's Trains said...

It sounds like she is frustrated. Could it be that her "inner voice" has surpassed her "expressive voice"? I am heartbroken about how hard it is for all you guys, you have my thoughts. I know her verbal skills have been improving as of late, does she give any kind of indication as to what is the matter? Such as " I want.. I would like..."
You are wonderful and strong this will pass. She is making progress and growing, I'm sorry it is so tough.

Suzanne said...

Thank you all for reading and your thoughts and support. Laura, I do think Janey is somewhat testing us. I want to figure out a way to stick to the ignoring plan while dealing with dangerous behaviors, and that is what I need to figure out. I've been thinking about ways to very calmly try to get Janey into a safe mode, while still not in any way giving in to the screaming. Some people on Facebook talked about learning to safely restrain her, and that might be necessary, although the thought of it is tough for me to accept. And so many plans are easier when I think about them than when I'm actually in the moment! Today, so far, is a lot better. We are still hugely on edge, but are having a lot more happy and calm moments, and I hope that trend continues, although more and more I do realize that whether or not the short term trend turn, the long term trend is what I need to look at, and it can be stark.

Suzanne said...

Sophie's Trains---about three different times, I answered comments and then saw while I was writing, you had written! We must be connected in a psychic way, if I believed in that! It very well might be that Janey's inner voice is being overly loud. So much of the time, the screaming and fury seems out of nowhere, that I do think a lot must come from in her own head. Today, in a calm moment, I asked her to point to anyplace that might hurt, just to see if there was something physical we were missing, and she did point to her hips, although she doesn't seem to be having trouble walking or running. She is maturing very fast, in a pre-puberty type way, and that could be causing literal growing pains, I guess. I also tried a lot today of the asking about emotions---are you sad? are you angry? are you worried?---as I think she does get the distinctions a little, and twice she said "ARE YOU WORRIED?" but I don't know what the worry is about. Another lesson of all this is we need to work on her communication extremely much, as that's really the key. If she can tell us what upsets her, we can help, or we can try to help, or we can at least talk it out! Thanks for your support!

Julie Vasku said...

Dear Suzanne,

I often read your blogs and I feel sad that it's sometimes quite frustrating with Janey...

I don't know whether my ideas/projections would be of any value, I can just tell what worked with my daughter...

So our therapist advised me NOT TO IGNORE symptoms of frustration of my daughter. The point is to somehow deviate her behavior from self-mutilating and violent (screming, biting) to socially acceptable (verbalizing she is angry). So the first point would be, when she is screaming terribly, to let her know no one is ignoring her. And to name her as well as your feelings (I see, you are so angry that you scream!!! But I do not like screaming it makes sad).

I know that many therapists recommend to ignore the unacceptable symptoms of autistic behavior, such as screaming, but I do not know any examples around me where such approach would be very useful (i.e. that the autists would eventually stop screaming and destroying stuff etc).

Maybe Janey is terribly afraid she is lost and no one can hear her screaming and she is screaming out of fear and loneliness.... and that is what makes the scream so difficult to listen to...maybe she is throwing stuff because she feels abandonded... I do not think she is frustrated at the first place, I think Janey is much more anxious and feared than simply frustrated. The screaming and throwing stuff, it's like she's making every effort to be listened to...she probably cannot let the others know about the confusion within herself in another way...

Maybe she wants to be listened to in a way, she wants to be comforted...

I got the impression her verbal skills gradually improve, therefore I think it would be much more useful to explain things to her (I DO NOT like you screaming, NOONE likes it, I LIKE if you do... speak... whatever, if you scream I leave the room, because I DO NOT LIKE IT... i), I did it with my daughter when she was very little verbal and it worked! Of course, I also know the sense of complete despair when talking to a non-verbal autist who screams loud... However, Zita somehow got it even if she wasn't able to explain her feelings or even verbalize them at that point.

This is just a bit of european gestalt-therapy, that I am pretty up to - somehow it works with autists I know around...

I am sending you so much strength, you are so admirable person, sorry for so long comment, it's just what came on my mind...

Julie

Suzanne said...

Thanks so much for your thoughts, Julie! I appreciate hearing them! What you are saying is what I sort of instinctively feel. It's what I've been doing most of the time until now, and the ignoring was kind of a desperate move when none of the rest seemed to be working. I don't think it works either, except short term, although I know I haven't given it enough of a chance! I do a lot of the talking about Janey's feelings, but I like what you said about talking about my feelings. That is something I am going to try to do more of---along with talking about how Janey must feel, tell her honestly how the screaming makes me feel (or as honestly as I would with another child who wasn't autistic) Janey often does listen when it seems like she isn't at all. The other day in the car, when she was hitting and screaming at her brother, he sang her a little song which has often made her feel better, and she seemed to completely ignore him--however, the moment he was out of the car, she started singing it happily. That was interesting! I am thinking I could use both approaches together, which is kind of what I've been doing as the ignoring is tough for me---saying "You know, Janey, I can tell you are very, very upset and angry, because you are screaming loudly. I am feeling overwhelmed by your screaming, and upset too, so I am going to go in the next room until you can stop, but I'm still around if you need me, and if you want to talk to me, I'm here" I like that a lot! Thanks again for sharing your ideas!

Antti said...
This comment has been removed by the author.
Jaynedeaux said...

I tried ignoring my son (5) yr old son when he screams
He now grinds his teeth. I miss the screaming.
He just started Tenex, I hope it helps
He totally knows what he is doing-Susan

Antti said...

Re-thinking, the pages I mentioned in my last comment were as a whole such that they just don't fit here. I'm sorry.