Summer school and some thoughts

Janey started summer school this week.  I was nervous about summer school when I found out she would be going to a different school than she does during the regular school year.  This is because she's technically in 6th grade now, and her regular school only has an elementary school summer program (although it goes to 8th grade during the regular year).  She is attending a middle school a ways from our house.  There was an open house last Friday, and we took Janey.  After going to the open house, I no longer felt nervous at all.  We found out Janey's teacher was going to be the husband of one of the most wonderful people we've ever had work with Janey---an ABA supervisor whose known Janey for many years and is the person who actually visited her in Rhode Island when she was at the hospital there.  Any husband of hers was okay with us, and he seemed great---like someone who would understand Janey and like working with her.  We also met the ABA therapist assigned to her for the summer, and she knew Janey from way back at her original school, and seemed great.  The administrator of the program met us as we came in, and was enthusiastic and very good with Janey. It was a huge relief to meet them all.

For the first time ever, I think Janey was truly looking forward to summer school.  I don't mean just it was the first time she looked forward to summer school, but the first time she's understood enough to look forward to anything.  She woke up excited on Monday, and when I asked her "are you happy you're going to summer school today?" she smiled hugely and said "YES!" in an emphatic voice.  She wanted to go out and wait for the bus about two hours before it was due to arrive, but I held her off until about 20 minutes early.  When the bus came (on time!) she jumped on with complete confidence.  I love it that all three of my kids don't seem to suffer from the social anxiety I have.  None of them has ever had much trouble separating from me.  I thought about how I would have been at age eleven in Janey's position, going to a new school.  I would have been a wreck.  I don't think it's Janey's autism that makes her different than me in that way, at least totally.  It's her personality, and I love that about her.

In thinking about this past week, I kept thinking about WHY things seem easier now.  It's partly because they ARE, but if I take any day this week, I could find examples of very tough behavior from Janey.  There's been screaming, the loud piercing scream.  There's been arm biting, lots of it.  There's been "toileting incidents".  There's been hitting of Freddy, who seems like her go-to person when she is angry.  There's been obsessive changing of TV shows, and meltdowns when I didn't understand what she wanted.  There's been, in fact, most of the behaviors she's had all along.  But if I thought of the week in a quick summary in my mind, I'd say it's been a very good week.

I think two things make life seem easier now.  One is duration.  The behaviors happen, but they don't last all day, or usually very long at all.  They happen, intensely, and then Janey recovers.  The other thing is perspective, our perspective.  Not that I want to think we ever DIDN'T accept Janey, but now, it's a different kind of acceptance.  Janey is who she is.  It's hard to explain, but I'm starting to see that parents of autistic kids are often made to feel that their kids are somehow fixer-uppers.  They have potential.  They need to be remodeled extensively, and then, they will be livable and valuable.  More and more, that kind of thinking is bothering me a great deal.  NOBODY is a fixer-upper.  That doesn't mean we are all perfect, if you see perfect as some ideal that doesn't exist.  It doesn't mean we don't need to work on helping our children, ALL our children, learn to live in society.  But in accepting that Janey is not some project, not some house that needs to be gutted and remade, we can also accept that there's going to be screaming, there's going to be arm biting, there's going to be times that are tough.  They don't last forever, and there are also times that are great.  I'm not pretending that the challenges of autism are easy.  They aren't.  I'm not saying that Janey is not, overall, more of a challenge to parent than most kids.  She is.  She is very, very challenging, often.  But all that doesn't make her less of a complete person.

Now I will go and try to explain to Janey why Netflix no longer carries "Hercules", and try to calm her meltdown over that.  I am tired of the daily battle over that issue, but it will pass, and it's part of what makes Janey Janey, the Janey that fascinates, frustrates, confuses, intrigues and captivates me, like her brothers, like all kids.

(Good) Time(s) in a Bottle

The last week with Janey has been wonderful.  She's been in truly a delightful mood.  We've gotten very good reports from school, she's laughing and happy at home, she did not have a tantrum ALL weekend last weekend, she is sleeping well and eating well and being as sweet as she can be.

I was thinking about the old Jim Croce song last night, and wishing I could save this time in a bottle.  Of course, we hope it lasts forever, but it won't.  I'm not being negative in saying that, I'm being realistic.  Janey's moods are extremely cyclical. A few weeks ago, we hit quite a low, and now, we are in a high.  And I don't think anything we do or not do has much impact on these mood cycles.

With Janey, everything works and nothing works.  When she is happy, everything works, all the ideas we have as to what keeps her happy.  She is happy with a routine, with lots of music, with plenty of car rides, with her favorite foods, with our willingness to change videos for her constantly, with being outdoors, with lots of attention.  When she is unhappy, none of those things help.  When she is happy, NOT following routines, or taking rides, or having a lot of music, can make her a bit upset, and we start to see the edges of unhappiness creep in, like arm biting or a worried face.  When she is unhappy, not following the routines is a disaster, but sometimes only to a small degree over the constant disaster-like unhappiness.  It makes me wonder how much we really affect her moods at all with what we do.

I don't know how common it is with autism to have such severe mood swings.  Much advice about autism seems to assume that behaviors have causes that are external.  This can be frustrating to me to read or hear about.  If you look at what works for Janey from a perspective of ABA type thinking, thinking that behaviors have reasons, you get very inconsistent results.  On days she's happy, you might think you've figured it all out.  I've fallen into that trap many times, even knowing what I know.  I think I've figured out a breakthrough, only to realize all I've done is helped a bit with a bump in the road in a day that is overall happy.  When I try to use the same approach on a bad day, it's completely useless, or helps only to turn Janey's behavior from "Should we go to the emergency room right now?" bad to "I think we might be able to make it through the night, just barely" bad.  It's like turning on a bright light in a sun-filled room, or taking away the light of one star on a starry night.  Neither of those things greatly change the already set general level of light.

So we are left with just riding out the storm, or in the case of the good times, enjoying the ride.  You can't put time in a bottle, but I wish we could.  I'd store the last week until eternity comes, and again I would spend it with Janey.

Screaming Trumps Theory

For a few weeks, Janey was very happy.  As is usually the case with her, we really weren't sure what was working---her new medication, spring finally arriving, the new behavior plan at school---it's never easy to say.  But she was calm, sleeping well, talking a bit more...and although I try hard to keep an even keel, I was feeling more hopeful about the future than I had in a while.

When things are going smoothly with Janey, I am able to step back and think more about autism and her particular form of it from a theoretical perspective.  I was doing more reading of books on autism, reading more on-line information about various approaching to teaching and learning in autism, and waking up mornings enthused to try new things.  In reading some about the rapid prompting method of teaching kids with autism (RPM), although I haven't yet researched it deeply, I was struck by how the kids are taught facts and information, not just building blocks of learning or emotional things.  One night, when looking out the window with Janey at night, I started telling her about stars, and how they are faraway suns.  I wound up talking to her about astronomy for a long time, while she seemed to be listening eagerly.  I had the feeling, as I have so many times, that I had hit on something important, that I would do things differently from here on in.

And then---Janey has a day when she screams all day, when she cries without ceasing, when she hits us or tries to bit us over and over.  She has a night where she wakes at one in the morning and never goes back to sleep, while she endlessly repeats lines from videos or songs.  She has days where her only words are "Snuggle on the bed!" and when I lie down to do so, she is calm for just a moment and then kicks me, hits me, screams.  She has days where she constantly reaches into her pullups and smears...well, you get the idea.  She has the days that try our souls.

Maybe other people are better at this than me, but when Janey has days like that, the theories go out the window.  It's very, very hard to feel hopeful and ready to try new things when you haven't slept, when you are in pain from repeated hits or kicks, when you are spending your days cleaning up tough messes.  It's hard to wake each morning ready to test some exciting new theory when the day before was what most people unblessed with a child like Janey would consider the toughest day of their lives, but which for us was just another long, long day in a series that stretches back years and into the future for...the rest of our lives.

I think this kind of weariness is why schools are better at staying consistent with behavior plans or teaching methods.  The teachers are extremely devoted to the students, but they know the day ends and they go home, they know the week will be over in time and they will have a weekend, they know summer always comes around.  For parents, that is not the case.  It never ends.  And when a child has been screaming for hours, when you have been hit over and over, when you haven't slept well in nights---well, I guess it takes a stronger person than I am to still calmly follow a particular theory or teaching method.  For me, it takes the energy I have to just try my damnedest to calm Janey down, to keep her clean and fed, to get her to sleep.  And to meet the needs of my other children, to keep dishes and laundry from taking over, to be an approximation of a functioning human being.

If....if Janey didn't have the extreme behaviors...if she were still just as affected by autism and learning issues, but she was more the unreachable kind of autism than the behaviorally challenging kind...well, I think I'd do pretty well.  That is where the image people have of God somehow handing out kids to the ones who can best handle them breaks down severely.  I feel like my strengths as a person and parent are not matched well to being Janey's mother.  I do the best I can, but I simply don't have the energy, physical or mental, to be the type of parent that would be best for her.  So I muddle along.  I get from day to day.  And over and over, screaming trumps theory.

Terrible Twos? Terrible Eights?

It's a little hard to describe how Janey has been lately. If I had to pick one word, it would probably be "trying". She has been very trying. But if I had a few words, I'd try to capture the good parts too---funny, alert, connected. And a few more not positive ones---naughty, defiant, loud, angry.

It feels a lot like what we have been told the terrible twos are. Neither William nor Freddy were particularly terrible at 2. William was tougher around 4, Freddy as a baby (and some could say, in some parts of his teen years, but that's hitting a little close to home, sorry, Fred!) But she is acting like I've heard the terrible 2s described. Everything is a big deal. Lots of NO NO NO, lots of loud demands, lots of just making herself heard. It's great, in a few ways, but as many things with Janey, the tough parts are magnified. Part of this is just she's a lot bigger than a 2 year old. I can't lift her any more. She is rapidly gaining on me in strength, and getting taller all the time. You can put things out of a 2 year old's reach, but not an almost 8 year old.

A few scenes---Janey wanting bacon. She asks once a little nicely, but her patience is gone after that. She gets right in Tony's face and screams "I WANT BACON NOW!" shaking her finger. Needless to say she didn't get any right then, but we almost had to laugh, that first time. It's not quite as funny now that she is using that tone for almost anything she wants. Later--Janey is wet. She is doing better with the potty, but far from perfect, but finally, it bothers her to be wet. We are in the drug store, and she wants to be changed. RIGHT NOW. She screams at the top of her lungs "I WANT PULL OFF. I WANT TO BE CHANGED!" She gets down on the floor and tries to pull off her shorts. I go to take her out, but I can't keep her contained. Tony has to take her instead. It's why I don't do things solo much at all any more. It's too scary. Another scene---Janey is in the back yard. She notices the neighbors are having a cookout, and goes to the fence and yells to them "I WANT A HOT DOG!" They are probably so startled to be addressed directly by Janey they don't know what to say. I take her inside for a hot dog.

But a more cheerful scene---we are picking up Freddy from a class he's been at. Janey is like a comedian in the car. She repeats almost everything we say, with a funny twist or a changed word. She recalls long ago phrases, and seems to be doing little routines. She sasses at Freddy, in a little sister way. We are all laughing our heads off. She's like a one woman show.

She gets very defiant. That's the hardest part. She wants some of my coffee drink. I say no. As I turn my head, she grabs it and flings it on the floor, then looks at me. It feels like she wants me to yell, and I give in and yell. I am not a yeller. But I am yelling repeatedly lately. I hate that. I can stay calm if I feel she doesn't know what she is doing, but lately, it feels like she does know very well. She wants a little excitement.

I think, overall, it's a good stage. But a very, very, very tiring one.

Why? The most unpleasant side of autism

If you have a child with autism, you might have guessed what I'm talking about. Yes, indeed, the lovely topic of diaper content spreading around. I'm trying to be delicate here. Basically, fecal decoration.

Janey has gotten better about this. There was a time when we were near despair over it. It was happening most every week, and happening badly. She was creative---stuffing it down air vents, rubbing it in hard to the wood floor, hiding it where you could smell it but not find it---all sorts of fun. I don't know if it was growing up or our reactions or what, but it's not as bad. However, today was a relapse. Janey was playing iPad nicely. We could both see her and hear the music. And so, that momentary second of guard being let down. She took advantage of it to decorate the whole screen of the iPad. Badly.

Thankfully, I invested in a industrial strength cover for the screen and the whole device, and I was able to clean it off separately and no real harm was done, except to our patience. We had a long talk with Janey. A new strategy---figuring that learning for her takes a great deal of repetition, we initially spoke harshly and put her in time out, but once things were clean, we worked hard---had her repeat our phrases about "never touching stinkies" and "never putting stinkies on the iPad or anything else", had her say sorry, got her to answer whether doing that to the iPad was good or bad and if it made us happy or angry, did a little drama recreation where one of us pretended to do the deed, etc. Janey seemed to get it. We put the iPad away, and hoped we had gotten through.

No such luck. She found it, and redid exactly the same thing, not an hour later. This time we were probably less progressive with the whole reaction, and just resorted to sharp "NO! NEVER AGAIN" and time out. And some tears, on our part.

The question is, WHY? Why do autistic kids have the urge to do that? It seems like something that would just be against human nature, that you would have internal regulation to tell you not to do, even if you are not able to think it out reasonably. We try to keep the house full of sensory toys. We change her quickly. But still, when she has a chance, she makes the horrible mess now and then. And I know we're not alone. I know it's a problem for many parents of autistic kids. Does anyone know why? How can it be stopped? Can any of the money for research be put into THAT research? It would certainly improve some lives.

Autistic behavior or naughty behavior?

One of the big challenges with Janey is figuring out when she is doing something due to her autism or when she is just plain being naughty or bratty! It's important to be to figure this out when possible, as I don't want to let her become poorly behaved in addition to being autistic. I think (I hope) this is possible. I don't see myself as a strict parent, but more a firm one. With my boys, I made sure they knew "no" did mean "no", not really so much by punishing them, but by following through---if I said we were leaving the playground and they ran from me, I went to get them and we got right in the car. They also learned that if I made a decision, it was going to stand, and begging and asking over and over didn't work. Politeness was and is important to me. They learned to say Please and Thank You, and I often still get comments on how polite they are, which means a lot to me. They were expected to be respectful of Tony and me, not in a way like we are some scary authority figures, but to the extent they did realize we were the parents and they were the kids.

I don't write all this to self-congratulate, as I think it's starting to sound, but to explain what my parenting style is, and how I want to make it be with Janey, as much as possible. It's hard. There are times when her behavior has nothing to do with naughtiness or brattiness. It has to do with a sound that is scaring her, or internal demons bothering her. But other times, she simply wants her way, and shows that in ways that are changed by her being autistic, but still are ways to try to get what she wants.

For example, the other night we got Chinese food, and as we often do, we tried to watch a TV show on Netflix as a family while we ate. Janey wanted to watch one of her Baby Einstein videos, and was hugely not pleased we wouldn't let her. She started hitting the buttons that change the mode of the TV, she found the remote and turned the TV off, and when all that didn't work, she started screaming a song from one of her videos at the top of her lungs, as if determined to make sure we couldn't enjoy our show. We didn't give in---we put the show up louder and told her she was in time out, and made her stay on the couch. It wasn't a fun meal, and we all probably would have had a lot more peace just putting on her show, but that was a time that she needed to see she couldn't have her way.

However, there are other times when she is falling apart, perhaps because she's tired, or having a bad day, when she will act out and I know it's not her being bratty. Sometimes when she is very upset, she'll ask for a certain show or a certain food. It's not really what she wants, and if we give it to her, she screams and throws it or turns it off. At times like this, I try very hard to stay calm, and to simply distract her and get her to sleep or settle her down. It's hard to explain how I can tell the difference, and maybe sometimes I can't really, but I think I usually can. She doesn't really hear us in that mode, and she wouldn't benefit from reason much.

I am proud of some of Janey's behavior lately! Yesterday she wanted her chip store run. I told her we had to go to the library first, she had to stay with me in the library and be quiet, and she had to be good at the store to get her chips. She did all of those perfectly. The line at the library and the store were both long, but she held my hand and waited patiently, and actually sang a cute song to pass the time at the store. She didn't try to open the chips early, she didn't lose it at all. I felt so, so happy, and praised her hugely. Times like that make me feel there'll be a day when we can eat at restaurants with her without fear, or take her to other public places without bracing ourselves for disaster.

It's going to be a long haul teaching Janey how to behave. I need to keep looking at my reactions to her actions and thinking hard about how I handled different situations. I hope I never stop doing that.