Forgot to Knock on Wood

I wrote a fairly cheery and optimistic year end post last night, about the success we've been having lately with working to keep Janey happy by doing things she asks for before she has a chance to melt down.  I forgot, however, to knock on wood in reality and in writing after finishing the post, and of course, Fate noticed that.

Today was horrible.  It was not a good start to the year.  Janey spent most of the day screaming.  When she wasn't screaming, she was manicly laughing, or flinging herself around frantically.

What went wrong?  Part of it might be have been that no matter how much we might want to, sometimes we can't do what Janey wants, and she wanted a lot of car rides.  Tony was tired, from her being up early and him being up late for New Years Eve.  He was a trooper and took her for a few rides, but she wanted more.  She also wanted walks, TV shows she wasn't able to name and who know what else.  We tried hard, but as soon as we'd calm her down a little, she'd lash back out.  She bit me and bit William in the course of the day---neither of us hard, but any biting at all is not something we really like.

We think part of what was bothering her was losing three baby teeth in the course of a few days.  Janey's teeth are odd.  She didn't get any teeth at all until she was well past her first birthday, and the baby teeth have been quite slow to fall out.  The dentist told us that she was at age 10 at about the dental level of a six year old.  Now her baby teeth seem to have decided to fall out all at once, leaving her mouth I'm sure feeling odd.  She has some adult teeth slowly poking through where the baby teeth fell out, and they are hurting her.  She said to Tony in the car "My teeth are rolling out!" which was an impressive sentence.  We are trying to explain to her that it's a normal thing to have happen, but I doubt she really gets it.

She might also have PMS, as she has recently entered the stage of life where that happens.  The first few months of that fun stuff weren't bad, but I know that PMS can be a very, very strong force for kids like Janey, and another thing there is next to no way to explain to her.

She tried today.  She really did.  At one point she wanted to walk to the store, but asked me in the middle of a huge fit.  I was worn out enough that I didn't take care not to ask questions as I usually do.  I asked "Do we have to be calmed down to go to the store?" and Janey quickly answered "Yes!"  I asked "Are you calmed down right now?" and she honestly said "No"  I said "Can you try to calm down?" and wonder of wonders, direct answer number three in a row, she said "Yes"  I told her to take some deep breaths, and she did, and calmed down enough that we did take the short walk to the store, where she was very good.  That lasted until about a second after we got home, when she started screaming again.

I will be glad when vacation is over.  I'm sure the lack of routine is yet another reason Janey isn't doing well.  I have to hope today is not a harbinger of the rest of the year, and I don't think it is.  But I won't forget to knock on wood next time.

Four phrases that work lately!

It would seem to stand to reason that when we find something that works well with Janey, we'd use it over and over---that we would remember it.  But that's one of the tough things about autism in reality versus autism in theory.  In the middle of tantrums, screaming, lashing out, hours of crying, we tend to forget what has worked in the past, or if we remember, are just too burnt out to break old ways of doing things and insert the new ways.  As a way of reminding myself,  and to see if anyone else finds these useful, here's four phrases that have worked well lately.....

"Great job!"

Praise in general has almost been a breakthrough lately.  I don't think I ever realized how much Janey needs praise, and I would have said I praised her plenty.  But lately, I have just been laying the praise on extremely thickly, and it is amazingly motivating to her!  I'll find the smallest thing to praise, and will lavishly tell her what a great job she's done, give her high fives, thumbs up, A-Okay, the whole bit.  From putting her clothes in the hamper to not freaking out when we say no to asking nicely to take a ride---we can usually find something to praise.  I think Janey is partly just happy when we are happy, and if we are praising her, we use a happy and upbeat voice.  I've always heard you should praise kids at least 10 times more often than you criticize them, and with Janey, the 10 almost needs to be multiplied by 10---100 praises a day!


"Here's the plan for today"

This is something I really need to say every single morning.  I forget often that Janey wakes up unsure what the day will bring.  School is sometimes five days a week, sometimes four, sometimes not at all.  Daddy is home sometimes, not home sometimes, and William and Freddy are the same.  We might be going in the car a lot some days, and not at all other days.  When you really don't understand the patterns, I'm sure it's scary.  This morning, Janey woke up much earlier than she has been.  Usually, she's been waking up just a little before the bus comes for summer school, but today, there was a lot of spare morning time, and I could see her getting more and more nervous.  Finally, I remembered, and said "Here's the plan for today.  It's a school day.  The bus will come and take you to school.  Then you will come home, and then Daddy and William and Freddy will come home.  Daddy will take you for a ride in the car."  Almost instantly, Janey relaxed.  For some kids, visual calendars work, but for Janey, who I am realizing is a very good listener, just running down the day like that works best.


"Let me know when you decide"

There are times it feels like I spend half my life giving Janey choices.  She'll say "Want to watch Angelina!" and she always, always has a specific show in mind, but never is able to quite tell me which one.  I'll go through all the episodes, she'll not give me much of a hint what she wants, I'll put on the wrong one, she'll scream---it's not fun.  Or she'll open the fridge, wanting something to eat, and not finding it, and I'll go through everything I can think of to offer her.  What has worked lately, though, is to just say something like "I know you are hungry, but you're not telling me what you want.  Let me know when you decide" and then walking away.  Sometimes, that works in that Janey comes over and finds a way to tell me what she wants, but other times, it just works to break the cycle---Janey picks something on her own, or changes her mind and asks for something else more specific.  It seems like she likes having the ball in her court, and it's certainly more relaxing for me.



"I'll be so proud when you calm down!"

This is the phrase that's blown my mind lately a few times with effectiveness!  Janey has been screaming, lashing out, having a fit, and I have stepped back and said "I'll be so proud when you calm down!"  It's the kind of thing that if someone had suggested it to me, I'd have said (mentally) "Yeah, right.  THAT will work"  But it does, a lot of times.  I think it gives Janey a moment to back down and a simple goal to work on.  The SECOND she shows signs of calming, I give her a huge hug and tell her how proud I am.  Sometimes, she stays calm, and sometimes, I have to do it a few times, but even if it only works partially, I think it's a good exercise, because ultimately, the only way to really help Janey not lash out and scream is to have her figure out how to calm herself, on her own.  This way, I'm not telling her how to calm down, I'm just giving her a chance to do so.


Now, of course, lots of times none of these work.  And Janey has been in a good mood for a few weeks, so they might not work at all when her mood changes.  But while I am feeling like there are a few things that actually do work, I wanted to get them down on paper (or on computer, actually).  And here's a picture of Janey this morning, just after me being proud she calmed down!

On looking for positives, medication and feelings

Yesterday, the positives were a little easier to find.  They still took some mining, but not quite the all out intensive mile deep mining operation they had the few days before.

The change, and I hate to admit this was the change, was that we put Janey back on her medication.  Tony took her to her psychiatrist on Tuesday night, after things just getting close to completely unbearable with the screaming and aggression, and we got the okay to put her back on the two medications she'd been taking for a while (not the new one she took before getting sick)  I hated to do it.  But it's not about what I hate.  It's about Janey, and she certainly showed us that once she felt physically healthy again, she needed that medication.

What the medication does it make it possible to actually try other ways to help Janey---to calm her down just enough so that we can use other methods along with the medication to keep her happy.

Yesterday was a long day, still.  Janey, although screaming much less, still was doing her routine of asking to go to Maryellen's house, over and over.  Toward the end of the afternoon, she hit me when I said no.  She did this after seeming to think about it a moment, like she was thinking "Hmm, maybe a good slap in the face is what Mama needs to understand me.  I'll give it a try!"  There was that much of a delay.

I decided to try a little dialogue.  I said "Ask me again if we can go to Maryellen's house, and I will say no"  I didn't want to set her up to think I might say yes.  She asked again, and I said no, and then said immediately "Now you say 'I feel ANGRY, Mama'"  She said it, and I immediately did the whole positive routine---the high five, thumbs up, A-Okay, with a big hug and praise.  I then did the routine over again, about 10 times.  She loves routines and repeated speech, and she loves the praise bit, so she enjoyed it.

Then she surprised the heck out of me.  Around the 11th time we did the routine, instead of saying "Angry", she said "Sad"  I was truly taken aback.  I hugged her over and over and said "You feel angry AND sad!  Great job talking!"

I decided the time was ripe for some more feelings talking.  I had her guess my feelings, something that is very tough for her.  I made a very angry face, telling her beforehand I was going to, because I didn't want her to think I was really angry, and then I asked her what the face was.  I had to prompt her a lot to get her to say angry.  I did the same thing with sad.  Then happy, and she guessed happy much more easily.  In fact, she often said "happy" for sad or angry, which makes me wonder if she is confused about how people are feeling a lot of the time.

She gave me another surprise.  I asked her to make the faces.  She can't do angry or sad on command at all, although she can do happy---maybe because she WAS happy right then.  I was thinking she really didn't get making faces.  But then I asked her to do surprised.  I showed her a surprised face---no luck.  Then I said "Surprised faces have very wide open mouths.  Try surprised" and she did---perfectly.  I should have known.  She is so auditory.  A face that can be explained in words is so much easier for her to understand.  It made me feel a wave of sadness at how hard it must be to be that auditory but to have such a very hard time talking.

I hope today is again a calmer day.  It's been a long stretch here waiting for summer school to start.  It finally starts Monday, and I have to admit I'm looking forward to it like Christmas.  I kind of bet Janey is too.  We've had enough of each other, but I do hope we will end this long sickness/summer stretch on a slightly higher note.

Calming Down

Just now, Janey did something she's hardly ever been able to do---calmed herself down (with a little help).  She had just been at the grocery store with Tony, and had seen a cake she wanted.  Tony didn't mind getting it, but in the bustle, forgot to.  At home, Janey asked for the cake, and of course there was no cake.  She had been in a wonderful mood all day, but fell apart at the cake news---I guess she really had quite a craving.  She screamed and cried and looked to be in sadness/hysteria mode.  I went over to her, put my hands on her shoulders and asked her to take a deep breath, and said if she could calm down and ask nicely, Tony would go back and get the cake (he believes very heavily on following through on promises to kids, and he had told her at the store she could have it).  Janey took a minute, looked at me, and said in a controlled voice  "Do you want to get a cake?", her usual means of asking for things.  We gave her a big hug, got on her shoes, and they are now off to get the cake.

It made me realize there is progress.  It's slow, it's back and forth, it's inconsistent, but it's progress.  Her getting upset is no longer always the sure sentence to hours of hell it used to be.  It often still is, but not always.  It's a combination---we are figuring her out and she is figuring us and herself out.  And we'll have some cake to celebrate.