Mining for Positives

After I wrote that title, I pictured Minecraft, a game Freddy used to be into, and how you can mine and find gems.  I pictured a gem called Positive, a sparkly and bright one, that is very hard to find, so you have to look hard for it, but it's also very useful to find.  That is how it's been looking for positives with Janey the past few days.

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!

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 again...it'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.

I can be cheerful too!

After reading other autism blogs yesterday, I was set off on a thinking trip. I can't write a totally cheerful blog---that would be a fiction blog. But I can say honestly that there are more than a few parts of raising Janey that are a lot of fun. I thought I should make another list---let's call it "Six Good Parts of Autism Parenting!"

1. Sharing her interests. Janey doesn't have the obsessive special interests that many higher functioning kids with autism do, but she has changing interests that become quite obsessive for a period of time. Most of them are videos. She adores Kipper, and we all have become pretty fond of the little dog also. We quote episodes, argue about favorites and appreciate how well done they are. We've gone through the same thing with Angelina Ballerina, Care Bears, The Wonder Pets, The Backyardigans and so on. Often it's a certain one episode she really gets into, and it can be extremely annoying at first, but strangely, sometimes after 100 viewing or so, it becomes part of your mind, and you notice cool things about it.

2. Her lack of ability to be mean. Girls can be very, very mean. I know---I was a girl. Even seven year old girls are starting to be mean---to tell their mothers they hate them, to exclude other girls, to have that ability to figure out the one thing that will hurt you most to hear and to proceed to say it. Janey doesn't do that, because she can't. I don't think she'll ever able to, and there are worse thing than having a daughter who will never be cruel.

3. The words we all pick up. Janey has limited speech, and she puts the words she does know together in unusual ways sometimes to get her point across. For example, cheese is "cheese cutter" because you cut it with a knife, which she calls a cutter. So we ALL call cheese cheese cutter now. Because we taught her to say "please" by saying "Can you say please?" that is how she says it every time---"I want cheese cutter! Can you say please?" We've picked that up---I'll say to Tony "Could you empty the trash? Can you say please?" It's simple fun for us simple folks.

4. The people you meet. Yesterday, I was having a rough day---just a depressed day. I went to pick up Janey at afterschool in a mood. But by the time I left 10 minutes later, I was feeling a huge amount better, just by spending a little time with a small percentage of all the wonderful people who care about Janey---the teacher she will have next year (thanks, Amy!), the after-school director (thanks, Michele!), a devoted parent who works tirelessly for her own special needs child and others (thanks, Dianne!)---and that's just a tiny sampling of one day. Janey brings me into the path of some great people.

5. The joy when Janey learns something. I was thinking this morning---I can't remember when either of my boys first wrote an alphabet letter on their own, or solved a math problem, or wrote a sentence, or read a book. I should remember those things, but I don't. It's because kids learn in such a rush. One day they are just starting to talk, the next they are taking pre-calculus or physics or Latin. But when Janey learns a new thing, it's cause for celebration. If she ever writes her name, or reads a sentence, it will be a landmark day. The first time I saw her doing a letter matching game with ease on her iPad, it felt like Christmas. When learning is hard-earned, you notice it, and celebrate it.

6. It's hard to put this most important wonderful part of Janey into words. I'll tell a little story. The other day, I saw a mother at school who had recently lost her mother. I was trying to find the words to tell her how sorry I was. While I was doing that, Janey walked up next to her and held her hand. I am sure Janey didn't understand anything we were saying, but somehow, because that was what she wanted to do, she did the perfect thing. The mother wrote me a note that brought me to tears about what that meant to her. When Janey hugs you, it can break your heart with happiness. She does nothing to be polite, or socially correct. She seems to be able to know what people are kind at heart, and to love them for it. More than a few people have been touched by Janey. I feel almost phony writing that line, because it goes against my "just the facts ma'am" line on life with autism, but it's too true not to include.

And so now, off to attend to my little sweetheart, who has been poking me with a spoon for the past half hour and demanding "purple ice cream". Never let it be said I never wrote a cheerful post!