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Saturday, July 4, 2015

Staying Positive---Not Easy

I wrote the other day about using praise and an upbeat attitude to help Janey when she screams and tantrums.  I do think it's a strategy that is going to work a bit, but it's not going to be easy, like everything else with Janey is not easy.

I had a few great successes over the past few days with using the praise.  Janey at one point was doing her loud screaming.  Instead of reacting in ways I've done for many years, which have never worked, I said "when you aren't screaming, I will give you a high five and say 'Great job!'"  Almost instantly, Janey stopped screaming, and I indeed went through a praise routine.  Then I said "What did you want me to do?", assuming that she had a reason for the screaming and the reason was something I could help.  She said "Want Little Mermaid Two!", her favorite movie right now.  I put it on, and she happily watched the whole thing, and Tony and I had an hour of peace.  It was great.

Today, I'm seeing the limits of the technique.  Tony and I are both exhausted.  We got up very early to go out and have a few hours to ourselves while Janey was sleeping.  The boys watched her, but she didn't wake up at all until after we were back.  I'd thought up the very early getting out idea out of desperation for a little time out of the house, and I guess it worked, except once Janey woke up, she was in a terrible mood and we were tired beyond almost moving.  I tried hard to respond to her endless screaming in an upbeat way, but I don't think she bought it.  She got mad enough that she hit Tony hard in the face.

That is where it gets hard to know what to do.  I know the things we have always done just don't work.  There are a couple natural responses to behavior like that.  One is thinking "She can't get away with that!" and yelling, or saying she has to go in time out, or the like.  This does no good, no good at all.  It makes her angrier, it makes the whole bit last longer, often she hits's useless.  Another response is to try to figure out what prompted her to get upset.  This is what the schools have often tried to go, by documenting her behavior and trying to figure out antecedents.  In theory, this seems like a good idea, but in practice, it is very hard to usually see any pattern to her behavior, and the schools have found that too.  Our version of this has been to say "What's wrong?  How can we help?  What do you need?"  Frankly, I don't think anything concrete is usually wrong and I don't think anything we could do will help. She is just upset.  That's Janey.

This is where I like what my friend Antti on Facebook said, that we were using, without knowing it, an approach called Solution Based Brief Therapy.  I looked up more about that, and need to look up even more, but basically, it has a person look to what things would look like if the problem they have were already solved.  What would it look like if Janey was not screaming all the time?  Then, you figure out a way to make that happen.  It sounds kind of simple, but when I think about it, it's a lot different than what has been done with Janey.  What we do often is looking back---giving consequences for the behavior, or trying to figure out the behavior.  In most anyone else, I think those are the right things to do.  With Janey, they have proven over many years to be useless ways of dealing with her.  So instead, I think "How can I most easily get past this screaming to the happy part?" That is where the praise seems to work.

Theories are great in theory.  But in practice, I will admit I'm discouraged, always.  This morning while we were out, a cashier at Trader Joe's said "Well, now you have your shopping done.  You can relax the rest of the day"  In the car, all I could think about was that I never relax.  I never, ever, ever relax.  Even if Janey is fine, the next minute could be awful.  Even if Janey is at school, I could get a call she's freaked out and they want to take her to the hospital.  And after the last few months, even if she seems healthy, I know somehow she could have something horribly wrong physically, and she could not be able to tell us.  I don't relax.

My friend Julie has told me often how her father (who was a psychologist) used to say "People can handle just about absolutely anything, if they know it will be over in time"  I think about that a lot.  I could handle a week of Janey's tough behavior, a month of it, even a year of it.  But there is no end in sight, ever.  Not for the rest of my life.  There isn't a day when we are going to get past this being tough and have the little girl we love so much without the extremely stressful behavior patterns.  I guess I've given up hope that things will get easier.

It's times like this when I think a lot about the other people I know, mostly through this blog, who are also living this life.  I'm thinking a lot of the first friend I made on-line through my writing about Janey, my dear friend Michelle.  Although many people outside of this life sympathize and do the very best they can to understand, I don't think anyone really does except those of you who live it.  I can't imagine life if I didn't know there were others out there who truly get it.  To all of you living this sometimes hellish life, I salute you.  Hang in there.  We have each other.


Sabrina Steyling said...

Suzanne, you are right that no one really "gets it" unless they, too, are living it. I myself can attest to that, as I do not have a child with autism (I don't have any kids and I'm not even married, at that) - so I really have no idea how you do it. However, and I'm sure I've mentioned this to you before, in my following your story, you have taught me many things that I would not have learned had I not begun following your blog and come to know your family. I wish that I COULD know exactly how it is for you, and offer more than thoughts and prayers - although I know that you have said yourself that they're just as appreciated. But again, if nothing else, your family, and Janey, has taught me many things I never knew before about the world of autism, and how incredibly wide that spectrum actually is. And I must say that for that, I am grateful to you.

Suzanne said...

I very much am grateful to you too, Sabrina, and to all the people who read the blog and care for Janey that don't have to know about the world of autism, but that want to---that is a wonderful thing. A lot of us are dragged into this world kicking and screaming, but others are like you---you choose to care. And that is amazing. Sometimes it's hard for me to believe that people can be that kind---all the people I've met along the way that care about Janey, that think about her and love her without even having met her (and ones that do after having met her too, even when she's not at her best!) THANK YOU! To all of you that choose to be involved in the world of autism.