"I am angry, Daddy"

A few nights ago, when Tony had just come home from work, Janey went over to him and spoke the words in the title---"I am angry, Daddy".  It's hard to describe, but I think many of you are familiar with what I'm talking about when I say those moments are sort of like miracles.  They make you feel like you are in a dream, or living another reality.  For Janey to just go over and say that, and not reverse the pronouns, and state clearly how she felt---well, it's something amazing.

When I think about it, it's also something we have worked hard on, and so has her school.  Both the school and we have worked for years on helping her identify emotions. But still...to have her suddenly say something like that, it always feels unexpected.

I used to read a lot of books about kids with autism, before I had such a child.  Call it premonition, or something.  Now I realize many of those books were selling a bill of goods, not intentionally, of course, but still, they often showed miracle type cures, or else cures that came about by parents so devoted that no-one in the real world could ever copy their methods.  And I know, now, that some kids do change radically.  I'm not saying they don't change as a result of help from those around them, but other kids can get that same help and change much less, if at all.  You aren't going to grow a sunflower from a marigold seed, even if both get the same care.  And getting a marigold is great, not bad, but if you write a book about how you grew a sunflower from a tiny seed and anyone can do that, even those with marigold seeds...you are not quite getting it.

In those books I read about autism, I would often hear of moments like the one where Janey said what she said, and I'd think "There!  They did it!  Problem solved!"  Those of us who have now lived the life now that's not how it works.  Doing something once doesn't mean it will happen again right way, if at all.  I don't expect Janey to suddenly clearly state every feeling she has.  But it's wonderful to know she CAN.

After Janey told Tony she was angry, he did one of the twisted sentences we often do.  He said "What Daddy can do to make Janey feel less angry is....", leaving the sentence open for her ending.  We do that to sort of pre-populate a sentence, so she can fill it in.  And she did.  She said "say 'Achoo, A Sneaker, A Sandal, God Bless You"  That might not sound like it makes a lot of sense, but it does.  Janey lately loves to have us pretend to sneeze, and then to say "God bless you" to us.  And Tony often pretends to sneeze by saying "a shoe, a sneaker, a sandal..."  So, we played that game for a while.

A few days before Janey's big statement, her brothers were here working on their financial aide forms, and Janey was very upset.  I took her aside to calm her down and did some guessing, saying "Janey is angry because Daddy is busy" (he was helping the boys).  Janey repeated but changed what I said, saying "Janey is angry because William is busy"  And indeed, when I let William know she needed some attention, she was much happier.  We are realizing that often what she seems angry about is when we aren't paying her enough attention.  I think we usually used to guess she was angry about more physical things, like feeling hungry or tired or in pain, and it's so wonderful to better understand what she needs from us.

We'll keep on working on feelings.  I want to thank you, Janey, for giving us that great sentence to let us know how you feel.  Whenever you are ready to tell us anything, we will be here to listen.

Talking about angry

I had a feeling yesterday afternoon would be a tough one.  Tony had a doctor's appointment after work, and so was going to be a few hours late coming home.  Janey doesn't care for that---not at all.  We've lately had some pretty good afternoons, but we do so by following a routine that is quite unchanging, right down to what I say when.  She gets off the bus, I tell her I missed her a million and was crying seven times for her.  I've said that every day for many years, and if I don't say it, she is not pleased.  Then she takes off her shoes and flings herself on her bed, and hugs Special Pillow for a bit, then asks for cheese.  I get it, cutting her slices.  She then asks for salami, and then does her own hunt to see what else there is.  I try to have a jar of salsa around, for a lower calorie treat.  She eats that, and then wants to snuggle again for a bit, then she asks for videos.  Sometimes she tells me which one she wants, something she wants me to browse.  Either way, we watch them until it's time for Daddy to get home, around 4:45.

A sign that would do no good

I told Janey early on that Daddy was going to be late.  She didn't react, but like clockwork, at 4:40 she started looking for him.  I reminded her he wasn't going to get home at his regular time.  Once it became apparent I was telling the truth, she started to scream.  And then screaming got loud, fast.  I ignored it as long as I could, but then, I asked her to stop.  She didn't, and I asked more firmly.  She didn't again, and I suggested she go in the "screaming room", a long ago strategy to try to contain her screaming to one room, the bathroom.  I went with her.

In the bathroom, after more screaming, I did what we so often do---thought up a song on the fly.  It was more of a chant, really.  It went "Janey is ANGRY because Daddy is LATE!"  I clapped on the "angry" and the "late".  Janey started repeating it near immediately, and we chanted it probably a hundred times.

How I must have sounded to Janey

Then she surprised me.  I did what I often do after she gets a sentence down.  I said the "Janey is angry because..." part and left the ending out, expecting her to say "Daddy is late".  Instead, she said "Mama said NO!"  She said the "no" in a (I hope) very overstatedly nasty voice, and while saying it, shook her finger in my face.

Well, I hope I don't sound like that when I say no, and I don't THINK I usually shake my finger in her face, but I can't say it's impossible....And I thought about it.  A little before Janey started screaming, I did say no to her.  She asked for more cheese.  We are trying to think about calories a bit more with her, and she'd already had a good deal to eat, so I said I didn't think we needed more cheese right then.  She didn't react much at the time, but I guess it stayed in her mind.  Or perhaps she was referring to when I told her not to scream, after she had started the screaming.  Either way, I made her angry and she let me know.

I've been working on getting Janey to verbalize her feelings, or on a more basic level, to recognize what she feels as angry or sad or hungry or happy or surprised, every chance I get.  I feel like the more she understands what her feeling are, the more she can tell us what she is feeling.  Yesterday felt like a bit of a breakthrough.  Maybe it wasn't the answer I wanted, but she told me that I made her angry. I am going to look at how I say "no".  There will still of course be times I have to say it, but I'll try to say it in a kinder and softer way.

After the screaming talk, the afternoon actually went well.  Janey calmed down a huge amount, and we watched videos and had a good time.  Just before Tony got home, one of her videos talked about having a cold and sneezing, and Janey started one of her favorite games lately, pretending to sneeze.  We do a lot of pretending like that---pretending to sleep, or cry, or get angry, or cough.  It seems like a way to work on feeling and symptoms and so on without actually having to get angry or sick.  I'm pleased that Janey seems to get the concept of pretending, at least in a basic way.  We pretended to sneeze back and forth for a good ten minutes, and then Daddy was home at last.  And I took full advantage and closed myself up and read for a long time.  Not a bad afternoon, overall.

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.

When your child bites---Unhelpful Internet Autism Advice

I don't look to the internet for advice on autism much anymore.  I've realized that even within the umbrella of ASD (autism spectrum disorders), Janey has aspects of her personality that are a bit unusual, and that even if she didn't, that old saying about if you've met one kid with autism, you've met one kid with autism holds very true.  It's hard for anyone to give advice about any specific autistic child.  That doesn't, however, keep people from trying.

I was imagining if I had a fairly newly diagnosed child and a problem to solve, and if I sat down at the computer to look for help.  Let's say, for example, I wanted some advice on how to deal with my child biting me.  I did a search this morning looking to see what I could find.  I realized that the three major pieces of advice I kept finding over and over each made me sort of mad, in different ways, in what they assumed about my hypothetical child or about me as a parent.  Why, you ask?  Well, here they are, with my reactions.

"Figure out what prompts the biting"

There's all kinds of variants of this.  I am not saying you shouldn't of course try to figure out what prompts the biting, or in the words ABA therapy uses a lot, what the antecedent is.  I'm just saying that almost any parent in the world would have already done that automatically.  I don't think most of us would be thinking "I'll just view this biting incident in pure isolation.  I won't think a bit about what led up to it".  OF COURSE we have already tried to figure out the prompt.  Sometimes, it's very apparent.  You told your kid no to more cookies and they bit you?  You tried to dress you child and they chomped on your hand?  In those cases, knowing the cause does little good.  What do you do---just give them cookies any time they ask?  Explain to them why they can't have more cookies?  Give them carrots instead of cookies?  Maybe you have a child where those solutions would work, but if you do, you probably don't have an autistic child or a child that bites.

If the cause of the biting isn't readily apparent, and you have to search for it, chances are it's not really the cause.  Kids with autism, as a rule, aren't subtle.  They aren't biting in response to some obscure stimuli.  Often, the sad truth probably is that they are biting because they are upset over something that can't be changed at all, or they are biting for no reason that is external.  In either of these cases, figuring out the cause does nothing.

As parents, we are pretty clued into our kids, and this piece of advice has always bothered me because it assumes parents are clueless.  If the cause is something we can figure out and we are able to change, WE ALREADY HAVE.  If your child hates the sound of the vacuum, you vacuum when they aren't around.  You have already figured that out.  That is not what is causing the biting.

"Give the child something else to bite.  Use a sensory diet"

Oh, wow.  That never once would occur to me.  If my child has just bitten me, all I really need to do is give them a bite toy!  That will fix things!  Oh, there's this stuff called "chewelry" they can bite instead?  You've fixed it all for me!

This one insults the child with autism.  I don't think any child is biting a parent or anyone else because they have nothing else to bite.  There are many, many, many things around a room that can be bitten.  If it's YOU who the child chooses to bite, that's not because you are just handy.  A bite toy or chewelry MIGHT work if your child is chewing their sleeves, or pencils, or something like that, but if they are biting aggressively, it's not really about wanting to bite in gneeral.

Sensory diet.  How I hate that term.  Here's what is meant by that, if you don't know.  It's not that I don't think that parts of what the "diet" consists of aren't helpful things for a child with autism, or for any child or adult.  It's the term I hate.  It smacks of the kind of 5 dollar word used by smug professionals to justify their pay.  I'm being nasty there, and I hope I am not insulting anyone who has used that term.  But use it internally.  When you say it to a parent with autism, you are making them feel like you know some special secret way to help their child.

"React calmly to the biting"

Now here's where the "autism parent as superhero" myth comes in.  Imagine someone has just bitten your hand.  Hard.  Hard enough to leave marks, to maybe even break the skin.  Hard enough that you had to pry their mouth off you.  Hard enough to hurt very, very badly.  Would you react calmly?  Would you say in a calm, steady voice "No biting", without any exclamation point?

Maybe other people can react calmly to severe unexpected pain, but I can't.  When Janey bites me, I yell.  I yell because it hurts.  I yell because I can't help yelling if I am in terrible pain.  I yell because I am angry she bit me.  Yes, I'll admit that.  When Janey bites me, it makes me angry.  And I don't think it's wrong that she sees that.

If by "react calmly", the experts are saying not to hit your child or bite them back, by all means, they should say so.  You SHOULD NOT hit your child or bite them back.  But you already knew that, and didn't need to be told, I would guess.  But staying calm?  We are not superheroes.  No matter how many times you are bitten, if you are really bitten, you scream.  And I think it's probably a good thing for a child to see that biting hurts.  They have to live in the real world, and they will, their whole lives.  People are going to react to being bitten.  And you are a person.


So, after I've dissed all this advice, do I have any to offer in its place?  Not really.  And that is what I wish was admitted more often.  If your child is biting you, and you are a parent with enough sense to come in out of the rain, you have probably already done all you can do to understand, react to and if possible, prevent the biting.  The biting that still occurs is part of the autism.  It may come and go.  It might get better when things are better overall.  It might get worse at times.  But the truth is if your child sometimes bites, they are probably going to keep on sometimes biting.  Protect yourself.  If they are agitated, try not to get in a position where they can bite you.  If they do bite you, get away from them so they don't bite you again.  Put ice on it.  That helps.  And if you yell at them "NO BITING!  YOU HURT ME!"---well, it probably won't do any good, but it's an honest reaction and might not be a bad thing for them to hear.

Outbursts

In many ways, the summer is starting out well with Janey.  She has been happy overall.  We've spent a lot of time in the back yard, as always, and a lot of time watching PBS Kids.  Both of those are low key activities that let us both relax, and I think Janey needed a little down time.

What's new and a little tough to deal with are Janey's sudden outbursts.  These are quite different than the times when she would get upset and cry all day.  The crying usually came on at least fairly gradually, over the course of a few days, but the outbursts are out of the blue.  Janey can be perfectly happy and content, and suddenly, she starts screaming hysterically, flailing around, crying a river, overcome with fury or misery or who knows what.

We usually have no idea what has set her off.  I try what I think of as scaffold sentences, where I start with something like "I am very sad because I don't like...." or "I am very angry because I want...." and she often fills in something, but it's hard to say if it's what she is really thinking or just a random fill-in.  I don't think she usually knows herself sets her off.  It could be a sound, or pain someplace, or just the random pre-teen emotion that she has no idea how to handle.

The good thing about the outbursts vs. the days of crying is that they are easier to calm (and shorter).  Often, just holding her for a little while and talking in a soothing voice can calm her, or giving her something to eat, or just sometimes waiting it out.

In thinking of triggers, actually tone of voice is a big one.  Janey is hugely sensitive to the tone of conversation, if not the content.  We've had some family around the last few days, and while we certainly weren't fighting or screaming, we tend to tell stories dramatically, and Janey doesn't get that.  She hears our voices sounding sad or emphatic or upset, and she freaks out.  We often have to switch to what I think of as the "It's a GOOD thing!" voice, like Anthony on that Twilight Zone episode.

I often to remind myself that most kids Janey's age have emotional outbursts.  Often, although they will say what is upsetting them, the outbursts make little more sense than Janey's.  I remember that with the boys.  They could suddenly be hit by a huge wave of anger or despair, which they would label as being about a fight with each other or food they didn't like or homework, when I'm pretty sure it was just a feeling out of the blue, one of those pre-adolescent moments.  When I keep that in mind, Janey's outbursts feel a little more manageable and less scary than some of her past behaviors, as long as we don't let them escalate.  If they are the biggest challenge of this summer, I think we'll get by.

Two hours of morning

I wake at 6 am, or rather Janey wakes me up.  That's nice and late compared to her standard waking time, and I am full of energy.  I'm determined this day is going to be different than the rest of the vacation days.  This day, I'm going to get a lot done---lots of dishes, laundry, and also lots of creative and educational activities with Janey.  I look at my yesterday self with scorn---why do I get so lazy?

Now it's two hours later.  Janey is watching PBS, for the moment, and I'm sitting here with my 3rd coffee trying hard to summon up the energy to do anything.  As is often the case when I am overwhelmed like this, I turn to here, to this blog.  Thank you, my dear readers, for listening!

What wore me out?  Well, lots of things.  A lot of it is just doing the standard morning things with Janey----getting her dressed, fed, her hair and teeth brushed.  None of it is easy.  She doesn't cooperate with the dressing---passively---she walks away in the middle or acts like she doesn't have any idea how to put legs in pant legs.  She demands foods we don't have for breakfast, and settles for a half loaf of stale French bread, which she crumbles into thousands of pieces while eating it.  She is eager to have her teeth brushed, one of her favorite things, but I somehow do it wrong, and she starts slapping me repeatedly, resulting in the useless time out on the couch.  And hair brushing is always hell, as she screams like I am trying to kill her, but when I stop, she demands more brushing.

A few random times other than those, Janey is angry at me.  She does her new behavior---suddenly and out of the blue attacking me, hitting me and looking furious.  I hold her at arm's length, and she moves in with her head to headbutt my cheeks.  It's truly a bit scary.

Finally, a little break.  There is no cream for coffee, and William wants cream, so he offers to watch Janey while I walk to the convenience store.  I tell you, that walk feels like a huge treat.  I don't realize some days how isolated I get with Janey.  Just being in a brightly lit store full of assorted foods feels strangely thrilling.  I get the cream and some cat food, and wish the line was longer, as I listen with interest to the cashiers talking about how they don't get paid enough to train new employees.  The conversations seems fascinating to me---an exotic piece of the world outside our House of Autism.

And now it's just past eight, and I'm about done for the day.  Any energy I had is spent.  I have 9 hours to go until Tony is home, so of course I'm going to have to keep going, but it's not the energetic, creative keep on going I wanted to have.  It's the get-through-the-day-with-all-of-us-alive type energy.  Once again.

A night of classic screaming

It's been a while since Janey had one of her classic screaming nights.  I guess we were due.  As usual, we have no idea what set this one off.  I picked her up at afterschool and she was very happy---she'd been running around and was in a great mood.  She was pretty chipper in the car, singing along to carols, and got out of the car in a good mood.  But things rapidly went downhill after that.  Tony was at the store when we got home.  Usually he's home from work when we get back from afterschool, so that could have been a factor.  But he got home just a few minutes later and right away we had dinner, so she wasn't hungry.  She asked for a video, we put one on, something wasn't right about it, and she was off.  She screamed for 3 hours straight.  It's always very, very hard to describe the intensity of these crying, screaming fits.  Imagine you are in horrible pain, and while you are dealing with that, someone tells you your best friend died, and then at the same time you get madder than you've ever been about something someone does to you.  It's that kind of combination---pain, sadness, anger---tied together in a massive screaming crying mess.

There is nothing that stops this kind of fury once it starts.  We turned off all sound and lights we could, I got into bed with Janey and talked to her in soothing tones and rubbed her back, I held her as much as I could, until she started kicking hard and flung her fist into my nose, not on purpose but just in blind fury.  Tony and I traded off every little bit, as no-one has the mental strength to deal with the fits alone.  I tried talking to her, tried of course asking what was wrong, tried telling her in comforting tones that everyone gets angry, everyone gets sad, it was okay.  I told myself how hard it is to be that upset about something and not have the words to explain it.  We did all our coping skills, and still, by the time Janey fell asleep about 9, we were done for.  Drained, empty, left without the good feeling that her relative calm of a few months duration had lulled us into.  When she gets like that, time has no meaning.  You don't think "well, it's been a while since she's been like this, so I can handle three hours of this just fine!"  You think "this has lasted forever and will last forever.  This is my life from now on"

And now she sleeps, and we hope that last night was isolated, and not the start of one of the bad times.  Oh, do I hope that.  Please, let it be just a one night thing.  PLEASE.

New thoughts about crying

The book I read yesterday sent me off on a bit of a thinkfest, which is a good reason to read books you don't totally agree with, or books that give you a new perspective on old problems.  The author was talking about a statistic on how many people with autism are non-verbal, and giving a reaction to that from some autistic bloggers who don't talk verbally.  They said the definition of what is "verbal" is too narrow, and that even if people don't talk, they are verbal if they communicate in other ways, the way that sign language is certainly a form of being verbal.  They mentioned sounds, body movements, typing, drawing and the one that got me thinking, crying.

I realized I don't see Janey's crying as communication by itself.  My typical reaction to her crying is to say "What's wrong?  Tell me why you are crying"  I often add "tell me in WORDS"  I have never really seen the crying as talking in itself.  But I guess it could be seen as thus.  It's saying "I am sad" or "I am angry" or "I am overwhelmed" or even just "I don't know how to react here".  Of course, I think after a while the crying feeds on itself, and the 2nd or 3rd or 10th hour of crying is not quite the communication that the first bit of crying is, although I suppose some might argue with that.  But that first bout of crying---what if I treated that as a spoken utterance, and reacted to it like that?

I tried it this morning.  Janey has gotten into watching "Angelina Ballerina" again, but a different version of it, one that has 3-D looking graphics instead of cartoon ones, and in which Angelina seems a little older.  She's watched two sets of these on Netflix, but prefers one of them.  As I often do when she asks for a show, I put on the less preferred on, just to try to stretch her horizons a little (if she specifically asks for a certain episode, I put that one, but if she just asks in general, I don't)  She watched until it got past the intro part that was the same, and then started to crying hysterically.  I was about to say my typical "What's wrong, sweetie?  Tell me what's wrong!"  but then stopped and thought "I know perfectly well what's wrong.  Why not accept her crying as that?" and said instead "You are very sad I put on the Angelina Ballerina you didn't want.  You are so sad you are crying!  Let's fix that right away!"  Janey gave me a look that stopped me cold, a look like "wow.  I can't believe it!"  She stopped crying, and started watching the new show.  I then said "if you don't like this show either, you can tell me.  Or you can cry to tell me"  She looked stunned, truly stunned.

I didn't make the connection until just now, but this morning, walking to her school from where we parked, twice Janey stopped and looked up at me, right in my eyes, and smiled a huge smile.  When we got to her classroom, instead of turning away and acting like she had forgotten already I exist, as she usually does, she stopped, held me hand and said "I want to take a little walk".  And so I took her for a little walk around the school before taking her back in the room.  This behavior might be unconnected, but it was very unusual behavior for Janey.  Maybe I did hit on something.

Of course, as I've said here over and over, I don't always have any idea what has caused the crying.  But I could just say "You are sad!  You are telling me you are sad!" and comfort her, without having to know.  Or I could guess, and hopefully hit it right.  But I think it's my attitude that I will try to change most.  Crying is communicating---a very basic thought that I hadn't really grasped until now.