Daytime Bedwetting, Crying, Guessing...

Toilet training.  I'd say I'm an expert on the subject, having been training Janey for about 10 years now, but that's a case where the longer you've worked at it, the less of an expert you probably are.  

My dear friend Michelle and I talk on the phone quite a bit.  Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey.  She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.  

I used to think that there would be an endpoint with the whole potty-training deal.  There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't.  It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.  

Right now, at age 12, Janey almost always uses the toilet for bowel needs.  That is wonderful.  I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.

For urine, Janey uses the toilet in some circumstances.  She wears underwear to school every day, and rarely has an accident there.  Out of the house in general, she does very well.  On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident.  Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes.  At home, though, it's much more of a chancy thing.  I'd say she uses the potty about 50 percent of the time for urine at home.  it's the other 50 perfect that is very, very tough.

For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home.  I'm not talking during sleep here.  We put her in two pullups at night, and we probably always will.  I'm talking when she's awake.  She will go over to the bed and wet it, in the daytime.  As you can well imagine, we are not huge fans of this.  We have tried everything we can think of to discourage this behavior.  We take her to the bathroom on a very regular basis, and try to get her to go.  We do everything we can to keep her off her bed when she might need to go.  We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it.  This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.

This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting.  We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep.  I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.

Coincidence or not, Janey has been doing a fair amount of crying this week.  She cried a lot after school last night, and she woke up crying this morning.  Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?"  Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it.  Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?"  The answer was clear.  I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying.  I don't know why she does what she does with the bed.  But I know that I can control how I react to it.  I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her.  But if she does do the daytime bedwetting, I can deal with it in a matter of fact way.  I can keep myself from getting angry.  I can just accept that for now, that is how things are.

I told Janey "I'm sorry I got upset about you peeing on the bed.  I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up.  You don't need to cry about it.  It's okay"  Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something.  And she smiled, for the first time of the day.

I wondered, after Janey went to school, if I was doing the right thing.  Then I stopped myself from the worrying.  I reminded myself, as I've learned to do, that there is no right way with Janey.  There's no book that tells how to parent her.  I'm writing her book.  I don't know how the chapter on toilet training will end.  It might never end.  But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.

"A Good Mother Would Never...."

Like many mothers, I have an idealized image of a good mother in my head.  In my particular case, it's the autism brand of good mother.  The autism good mother is endlessly patient.  She completely accepts her child's autism, while at the same time doing everything in her power to help her child live in the world.  She constantly seeks out therapies which would help her child, yet at the same time makes sure her child realizes they are perfect just the way they are.  She is careful with diet, with tone of voice, with IEPs, with toys, with TV watching...with everything.  And the one thing she never, ever does, of course, is yell at her child.

We all know the good mother is a myth, but I think many of us still strive to be that myth.  Part of it is what we read.  Those writing about parenthood, without maybe doing so consciously, paint themselves in the best light possible.  We might jokingly admit to small transgressions "I put on a video just hoping she would leave me alone for a while!  I gave her soda for breakfast!  I dressed her in yesterday's clothes again!"  But we don't talk about the moments that are not funny, not silly.

The other night, I yelled at Janey.  I really, really yelled at her, loudly and angrily.  I feel awful about it.  I'm not a yeller.  I don't lose my temper often.  I can only think of a few times in my life I truly lost my temper.  That's not a result of some wonderful self-control---it's just not in my nature to get very angry very often.  I get depressed instead, or silent, or secretly seethe internally.  But this time, I really yelled.

The setup was this:  Janey had come back from a ride with Tony.  I took her to the bathroom, as we do after a ride.  She didn't use the toilet.  I asked her a couple times if she was sure she didn't need to go, and she repeated "sure she didn't need to go!"  Then she wanted to cuddle on the bed.  As soon as we got on the bed, she looked at me, smiled, and proceeded to wet the bed all over.

For more background, this was the 5th or 6th time in a row that exact scenario had played out.  I'd take her to the bathroom, she wouldn't go, and then she'd go straight to the bed and wet it.  I had spent the last many days washing blanket and sheets.  She won't leave waterproof covers on---in her eyes, under the covers usually means straight on the mattress.  We got a new mattress, badly needed, a few months ago.  We can't buy a new mattress every month.  

So, without stopping to think, without taking into consideration all the things I want to have taken into consideration with Janey---that she might not understand what I have said, that there might be sensory reason for her actions, that she truly might not realize she had to go until she's on the bed, that she prefers to use the bathroom totally on her own and not be taken by me, that the reason for her actions might be something I don't understand at all but that in her head is totally reasonable---I yelled.   I said "You stop that!  You go in the bathroom right now and use the toilet!  YOU CAN'T KEEP PEEING ON THE BED!!!!"

Janey's response?  She laughed.  After a while, she did get the message that I wanted her to go into the bathroom, and she went.  I lay there, angry and wet and just plain tired of it all.  It took a few minutes for the guilt and sadness to set in.  I don't want to be like that.  I don't want to yell at Janey, or have anyone yell at her.  

A part of me does understand that even a saint would sometimes lose their patience with Janey (or with almost any kids, at some point).  I do know that it's likely that every parent on earth has yelled at their kids once or twice.  But still---I wish I hadn't yelled at her.

When I calmed down, I told Janey I was sorry.  I told her that again the next day, and the next.  I washed the blankets and sheet again.  I put down the pads again, and hoped she wouldn't move them.  I told myself that her progress with toilet training has been great lately.  She has worn underwear to school for months, with barely an accident.  She almost never misses with "messy" toilet needs.  She uses the toilet for urine at home much of the time, and she prefers underwear to pullups now, and we even take her in the car in underwear.  The bed issue is something we need to work out (for daytime---I don't imagine she'll be out of pullups at night for a long time, if ever), but overall, she's doing well.  

In some ways, there is good in the Good Mother ideal.  It's something to aim for.  But none of us are going to always be that Good Mother.  However, most of us are smaller case good mothers, indeed.  We love our kids.  We try every day to do the best we can for them.  We aren't perfect.  But especially for those of us with children with special needs, we need to take the Good Mothers we read about with a grain of salt, and to keep just being the good mothers we are, and supporting each other in that sometimes incredibly challenging task.

What to do about hitting???

I'll start by saying that from what I've read, the majority of kids with autism are not aggressive.  By saying that Janey is, and that her hitting and other aggression are becoming a big problem, I'm not saying that's a trait most kids with autism have.  However, some do.

I say this because I think there's a reluctance in the autism community to really talk about aggression.  We don't want our kids with autism labeled as being aggressive.  I can understand that.  But for those of us with kids that are indeed prone to acting out aggressively, talking about it openly is important.

Janey lately has taken to hitting me whenever she is denied something she wants.  As you could guess, that means a lot of hitting.  Any request that's reasonable and do-able, I do respond to positively.  However, as anyone whose ever had children knows, not all requests are like that.  When Janey wakes at three in the morning and wants to go to the store, or when she decides she wants to wear a bathing suit to school, or when she wants to watch her TV show during the one hour of the week that Freddy is watching a show, or when she wants Daddy to come home immediately in the middle of a work day---well, we can't always say yes.  And more and more, our saying no is met by her whacking me hard in the face.

The problem with almost all methods I've seen cited for dealing with hitting are that they assume two things Janey doesn't really have---impulse control and an understanding that other people have feelings.  I can say firmly "No hitting.  That hurts me."  Okay, but for that to do a bit of good, Janey has to be able to think before she hits, and she has to care that she hurts me.  At this point right now, both of those are beyond what she can demonstrate.  I'm not saying she can't control herself at all, or that she has no compassion.  I'm saying when she is angry, whatever amount of control and compassion she does have are out the window.  When she is calm and  happy, she might be able to use some self-control and to be very sweet and caring toward me, but when she's calm and happy, she's not hitting.

The other big theme I see often used in talking about dealing with aggression is to figure out the cause, as if somehow doing that will fix the problem.  Well, in most all cases, I know the cause.  The cause is being told no.  It doesn't take rocket science to understand the cause of Janey's aggression when she says "Want to go to the ice cream store!" and I say "Not right now" and she hits me.  I don't think there's a hidden reason or a lack of communication there.  She states plainly what she wants, I saw no, and she hits me.

So---how do I deal with this?  For now, what seems to work best is a riding out the storm method, a "least said, soonest mended" kind of thing.  As hard as it is, I try to react minimally to being hit.  If I show pain or anger, that escalates everything.  Janey is hugely responsive to tone of voice and to the mood of a room.  So my natural instincts, to scream "STOP HITTING ME!", put things into a state where it's very unlikely Janey IS going to stop, or going to understand why she should stop.  If I can walk away, ignore her as much as possible and try to as quickly as possible get things back into a good mood state, the net results seems to be a reduced amount of hitting.

However, it's not always possible to stay calm.  Janey is getting bigger all the time.  Her hitting isn't just a nuisance---it hurts.  It hurts a lot, and as she gets bigger, she is going to be able to do serious damage.  And even if I somehow are able to remain calm, I can't expect the larger world to do the same.  I get the brunt of Janey's hitting, but she's certainly been known to hit her brothers, and occasionally, kids at school, teachers and staff and more.  How can that be dealt with?  Frankly, I just don't know.

I don't enjoy writing about Janey being aggressive.  I wish more than anything that the whole issue would just go away.  But I don't think it's fair, to me or to Janey, to pretend that it doesn't exist.  As she gets older, more and more I am going to need help with this.  I'm going to need help to physically stay safe, and keep Janey and others safe, and by being honest now, I hope I can help us, and others with kids like Janey, get that help.

A trip to the library

As many of you who have joined the Facebook page "Rarer in Girls", which is a companion to this blog, already know (and as an aside, if you would like to join, you are welcome, if you'd like breaking Janey news but much more importantly, some great discussions with terrific people!), Janey did something very cool yesterday.  She found my pocketbook, took out my wallet and located my library card, which she brought to me and said "Want to go to the library?"  That was a surprise to me on many fronts.  She had never before expressed an interest in the library, but more, I had NO idea she knew what a library card was or what mine looked like.  I was truly stunned.  And happy---I love the library!  So I told her we would go after school today.

However, that plan got moved up in the day, due to Janey's bus never showing up.  This was supposed to be the legendary, much rumored but little seen Actual Day With School, but after waiting for Janey's bus for quite a while, her aide (who waits by our house) told us that 100 bus drivers had called in sick and there wasn't going to be any bus.  We thought about driving her, but that would require Tony missing a good deal of work, especially if she also had to be picked up after school (I don't drive in the snow tunnels that are the rule right now in the city---see pictures!)  And I figured a day without many bus drivers was going to be a little chaotic, so I figured I'd keep her home yet again.  I swear, I'm almost starting to see the appeal of homeschooling---at least it's a routine that can be maintained and not one dependent on weather (just kidding a bit, I'm not going to homeschool)

So---we went to the library around noon.  Like so many trips with Janey, what would be a little outing for most people turned into quite a deal with her.  It illustrated so much of what is tough with her and also what is great with her that I thought I'd write about it.

After finding parking (the lot was very full and made smaller by snow mountains) we went in and went to the kids room.  I kind of knew that Janey's picture of the library was not accurate.  I'm pretty sure she saw a video about going to the library, probably complete with giant dinosaurs or animated creatures, where there was lots of singing and fun.  She's been to the library with me lots of times, but just to quickly pick up books that were being saved at the desk for me, and that was usually a different branch.  But I figured we'd see what she thought.

Janey very briefly looked at the picture book section.  I told her she could pick out any books she wanted to take home, but she had no interest in that.  Instead, while I was distracted for about a second, she ran across the room, straight toward a baby in a mother's arms.  When I saw that, I screamed "STOP!"  I didn't use a library voice.  Several calm mothers with perfect looking little toddlers sitting serenely reading books gave me a troubled look, like I was breaking some kind of code.  I felt like saying to them "I was once you.  I used only gentle tones.  I explained everything carefully to my children.  I would have sat down with you and made friends and arranged a playgroup.  However, if you value your baby's safety, you should be very glad I am not like that now, or Janey would have at least tried to grab the baby out of your arms"  Instead I just said "She is autistic and a little unpredictable"  They all smiled an inclusive smile and we went on our way.

The kind librarian asked me if we were looking for anything special, and I said some Mother Goose books.  She showed me the section, and I grabbed a few quickly, while Janey wildly spun a globe that was on the shelf.  Then she went back to the picture book section and I again said she could pick a book.  Evidently that displeased her, as she grabbed my hand to bend back my fingers and then did some fancy trick I am still not sure how she achieved, and twisted my arm around somehow behind my head, and for a minute I thought she was going to break my wrist.  I hissed out "LET GO NOW" and she didn't, but I got out of the grip.  I said for the benefit of the audience "Okay---we tried the library a little bit, but when you get upset, it's time to go!  We'll try again another time!"  The librarian was very sweet and offered Janey a sticker, which she took.  I checked out our books and we blew that joint as quickly as possible.

So...what's the lesson here?  Partly, that I probably should not have attempted the library alone with Janey.  She easily could have hit the baby or seriously hurt me.  But in a way, I'm still glad I did.  I need to get Janey out there, to have her be part of the community as much as I can.  It's very, very, very tough to do, but she did ask to go to the library, and maybe if we do try another time, it will be easier.

The whole deal does illustrate why giving Janey a "normal" life is so hard.  There is so, so little I can do safely with her any more.  It is why inclusion, in so many meanings of the word, is challenged by a child like Janey.  And it's why parents like myself, and there are lots of us, so very much need help.

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.

Life Isn't Fair...and other negative thoughts

I will start with a confession.  Almost every day, I dread Janey getting home from school.  It's not that I don't want to see her, but the roughly two and a half hours between when she gets home and when Tony gets home are an extremely tough time.

I try, very hard, to figure out ways to make this time better.  I've written about that before, quite a few times.  I think hard about what to do to improve the time.  Lately I've been giving her a verbal schedule as soon as she gets home "First a snack, then play toys, then read books, then watch a video, then Daddy home"  Janey is really only interested in two of these things---the snack and Daddy getting home---but I try hard with the other things.  When the weather allows it at all, we spend time outside.  This spring, I plan to add a nice long walk to the daily routine.

Today, it all went downhill quickly.  We had the snack---lots of leftover Chinese food.  We played toys.  I had gotten Janey some new-to-her My Little Ponies at the thrift store, and we played with those for fifteen minutes or so.  (Actually, I played with them and she watched---that is how most of our playing goes)  I read her a book about Little Ponies, and she sort of listened.  Then we put on a video.  She has enjoyed some Weird Al videos lately.  She did today too, until one came on that bored her.  I tried to find something else she'd like.  I took a chance on "Dancing Queen" by Abba, which she seemed to like at first.  But then she stopped liking it.

I knew she'd stopped liking it when she kicked me, hard.  As I got up and started to lead her to time out, she reached over quickly and smashed my nose, hard enough that it hurt very much.  I cleared away quickly enough so she wasn't able to bite me, as she was trying to do.  I shouted for her to get on the bed.  I try to stay calm, but I wasn't feeling calm, and yes, I yelled.  She got on the bed, in a fury.  She tried to get up immediately, and I told her to stay where she was.  She lunged at me.  I walked away.  She got up.  I stopped trying to get her to stay on the bed.  I didn't want to be bitten or hit again.  She asked for strawberry milk.  I said no, not right then, not the way she'd been acting.  She decided to fix it herself.  As I ran over, she spilled the whole canister of powder on the floor and grabbed a glass of water and poured it over the pile of powder.

At this point, my mind just kept saying one thing, a not very useful thing.  I was thinking "This isn't fair"  I haven't really thought that in that particular way before.  I've had, of course, a few moments of thinking that other people do have it easier, but I very much believe that oft-repeated phrase "Life isn't fair"  What I was feeling right then wasn't that, though.  It was feeling that the relationship between Janey and me isn't fair.  I try, I try so very hard.  And she seems to try not at all.  I always struggle to be positive, to make her life better, and I was feeling right then---she never tries to make my life better.

Of course, I realize that isn't fair to think.  Janey is not capable of seeing things from my perspective.  She isn't purposely trying to make my life hard.  I am sure she doesn't want to be the way she often is, angry and destructive.   But damn it, it gets hard sometimes to be her parent.  It gets hard to see the silver lining.

Lately I have very little energy.  I am not sure why.  I am tired all the time.  Some of this might be depression, or hopelessness, but a lot of it is probably physical.  It's been a few years since my thyroid dose was adjusted up, and I recognize a lot of the tiredness as how my body feels when my thyroid replacement is not enough to work.  Or it could be one of the two or three other autoimmune waiting in the wings, the ones blood tests show I have although my body doesn't yet show all the signs.  The tiredness, whatever the cause, isn't helping matters.

Still, things are better in a few ways, I realize even on my worst days.  Janey is crying less and sleeping better.  She is calmer overall, for sure, than she was during the dark days in November.

It's when I write entries like this that I hope all of you who have told me that even the discouraging posts I write can be helpful are telling the truth.  I don't like to be downbeat.  It's something people point out to me a lot, how I will complain a bit, but then add in something positive to the conversation, even when it's not really warranted.  I'm trying to work on that---on feeling like I have to be upbeat when I'm not.  So---no cheerful ending, although I'm fighting the urge to include one pretty severely...

Car Trouble

The half hour car drive to and from Janey's school has usually been a good time for us.  We listen to music,  I talk, Janey sometimes talks, we just relax.  However, the last few days have been awful.

It started after school on Monday.  Janey wanted her shoes off, and took them off, which was fine.  But then she said "I want to snuggle on Mama's bed", one of her most common requests, but one she doesn't usually make in the car, in the middle of traffic.  I said "We will when we get home.  We can't snuggle in the car"  From what I can figure, Janey took that to mean we should get out of the car that second, so we could have our snuggle.  This was at the worst point in my drive, where I am in the middle of 4 lanes, two going the other way and one to the right of me going my way, about to turn into a very complicated intersection of 5 major roads, at which I have to get to the left and then across 4 lanes to get to the far right.  It's taken years to get to the point where I'm not panicked every day about it.  So at this point, Janey wanted her shoes back on.  They are shoes which take two hands to get on.  I was stopped at the light, but I still couldn't do it.  Janey was getting hugely upset, screaming and tossing the shoes.  I made a dumb move and tossed the shoes onto the floor of the passenger's front side, where she couldn't get them.  So she did the obvious counter-move, and took off her seatbelt to try to get them.  I screamed at her to put it back on, knowing she couldn't do that.  I had no way on earth of pulling over where I was, or for a bit.  This is city driving.  Luckily, she listened when I said to sit back in her seat---I had visions of her trying to take control of the wheel.  I pulled over as soon as I could, put her shoes on and her seatbelt on, and thankfully, made it home alive.

Fine.  But yesterday, both going to school and coming home, Janey once again took off her seatbelt.  Yesterday morning, it was because I'd committed the crime of not replaying the song she liked for the 5th time, so she decided to come up front and take care of that herself.  Again, me screaming at her to sit back, waiting until I got to a safe place to pull over, putting back on the seatbelt, blah, blah, blah.  I spent the rest of the ride talking to her dramatically about not taking off our seat belts, with lots of talk of "TERRIBLE car accidents" and "Janey getting EXTRA hurt", which was probably not useful for her but I was in a state.  Coming home, I had her go over with me over and over what we NEVER do in the car, and she faithfully repeated we NEVER take off our seatbelts, and that is TOO DANGEROUS, and all.  And about 5 minutes into the drive, she took it off.  She had the courtesy to be startled and try to put it back on when I yelled, but the damage was done.  Again, look for a safe pulling over spot (of which there are extremely few on our drive), pull over, put it back on, lecture, etc.

Lots of issues come up here.  I have no idea how to deal with this.  Janey doesn't truly care if I yell, she doesn't get punishments, she doesn't care about rewards.  She has next to no impulse control.  She wants what she wants, when she wants it.  And she is getting bigger.  I can see a day coming, hopefully not for a few more years, when it will be too dangerous for me to drive her alone, or anyone to drive her alone, and that will put even more limits on our life.  I am probably projecting too much, but it is scary.  I have no idea how I will deal with a Janey as big as I am.  And in the near term, I have to figure out a way to keep the seat belt on.  I will see if there are locks, although I admit it scares and bothers me a little to think of her locked in a restraint in the car.  Is that safe?  I will continue my ineffective lecturing and taking away of treats and videos, both of which I did the last few nights although I am quite certain Janey made no real connection to the car, although she could recite when I asked what she had done that was naughty.  She can recite anything.   That doesn't mean she gets it, or it will come into any play when she is again faced with the situation.  I'm dreading today's drives.

Autistic Meltdowns ---- 3 Ideas

In the no-parenting-book-gets-it world of autism, a lot of figuring out what works is just trial and error.  I was reflecting tonight, after a few meltdowns, that it's actually getting better.  A year ago, the kind of meltdowns Janey had tonight would have lasted much longer and been much more severe.  A lot of that is just Janey getting older, but I think we have learned a little more about what works for her.  I know what works for Janey might not work for any other kid with autism, but I thought it would be worth writing about anyway, just in case!

Idea Number 1----Quiet it all down.  When Janey is melting down, crying, screaming, it creates chaos, both just from her meltdown but also, I've realized, some from our reaction.  It's very hard to stay calm with her kind of meltdowns, which can lead to her hitting herself, biting herself, tossing things, screaming in an ear-piercing way---you probably know what it's like.  So lately, our very first response is to eliminate all other noise that we can.  If the TV is on, we turn it off.  If music is playing, off also.  We talk as little as we can and in as low voices as we can.  I find sometimes actually having everyone but one adult leave helps, just because it keeps us from talking to each other (but the other adult stays close by, because you never know when she will need two of us to keep her safe).  I also turn off lights.  When everything else is calm, it seems to help Janey get control, or at least not be more irritated by the sounds around her.

Idea Number 2 ----  Soothing predictable actions.  With Janey, what I often do is rub her back, or if she is too upset for that, even just tap next to her on the bed or couch, something rhythmic and even.  Once she is quiet enough to make it worth the while, I sometimes sing a lullaby while rubbing her back or tapping, with the same verses being repeated over and over.  I think it gives her something new to focus on that, something that can quiet whatever is inside her mind making her upset.

Idea Number 3  ---  Sleep or eat.  Usually, when Janey loses it, she's in one of two states without realizing it, either hungry or tired.  She doesn't seem to know herself always when she's feeling either of those.  If it's close to bedtime, I do what I can to get her to sleep.  We are lucky in that she falls asleep pretty easily (staying asleep all night is more of the challenge, usually).  If it not bedtime (Janey never naps), we get her eating.  Although she asks for food all the time, when she's really upset, she doesn't seem to realize she's hungry.  So we just get food into her any way we can.  We offer her any of her favorites, we run to the little store nearby to get what she might want, we do whatever we can to feed her.  That works very well, often.

These ideas don't always work.  Sometimes, Janey is going to melt down and we aren't going to be able to do a thing about it.  That is just about as hard to deal with as it always has been, or more hard, really, because Janey is bigger.  But as the years go by, I think we are very slowly learning Janey, and maybe she is learning us, too.

The stunned look

When I picked up Janey on Thursday from afterschool, as soon as I walked in the door, I saw a look on many faces that I was very familiar with.  It's a look I've seen on my own face, on Tony's face, on almost anyone's face that has been around Janey during one of her extremely tough spells.  It's the stunned look.

Janey had had a terrible day at school and afterschool.  From the various reports, she scratched her neck in anger until it was all scratched up, she screamed her blood-curdling scream off and on for hours, she flung back her head while riding the bike she loves to ride usually, making riding it unsafe---she just plain melted down all day long.

When these storms come with Janey, there is nothing anyone can do but keep her safe, as the afterschool director said.  After all these years, they are still stunning for me to watch, and so I understood those looks.  They aren't the regular Janey---thank God.  Even though the people at school are all with Janey a great deal, they haven't all seen many of these spells, and some probably not at all.  And so they get the look---I would say it's close to the look you get after witnesses some scene of horror, almost.

The amazing people at school dealt well with Janey during this spell.  I wish I had more to offer them for ideas.  There really aren't any ideas or helpful things.  You just have to ride it out.  I have no idea what was up with her.  We all worry she's sick, or something is hurting her.  She screamed a huge part of the ride home, a large part of the evening, and then slept well and got up fairly cheerful, or I would have considered keeping her home, just to give everyone at school a break, although people always tell me I don't need to do that (thanks, Amy!)   But she was mostly recovered.  She was off and on at school, from reports, but nothing like Thursday.  She has a few screaming times last night, but actually ended the night snuggling in my lap, which is pretty rare and was wonderful, and she woke up early this morning as cheery as a girl can be.

It's hard on everyone when Janey gets a spell.  That's why the look comes up.  You think you're getting her, you are understanding her, she's developing a routine, things are going well.  And then out of the blue---she's screaming, she's scratching herself, she's banging her head, she's turning red with fury and frustration, and absolutely nothing you say or do can help.  It defies the logic we like to think we have as parents and caregivers.  It's like witnessing a bad storm.  You just get stunned.  And it passes, and you relax, and think again you've got a handle on it, and then it stuns you all over again.  If only I could understand you better, Janey, and help you avoid those storms.

Tired of tired, impatient with patience

Janey is asleep now.  She fell asleep, today as yesterday, at 5:30pm.  Far too early, as that means she wakes around midnight with lots of middle of the night energy.  And although Tony trades off with me, and we get her back to sleep after a few hours, the night is not restful.  The nights are often not restful.  Janey almost always ends up in bed with me,  She is a bed hog, and she kicks.  She has no notion of personal space, and she thinks nothing of elbowing me hard to get where she wants to be.  I don't think I ever sleep solidly at nighttime, not for years now.  And I'm tired.  The tiredness is awful now.  I have a doctor's appointment in a few weeks, and I have some big questions for the doctor.  The last round of thyroid testing I had showed my thyroid was not working well again, but she chose to not raise my dose of replacement. I take a pretty high dose, and I guess there is a max to it, although I'm not at that yet.  But I'm noticably more tired than usual.  I am feeling at the point where almost everything feels like an effort to do.  And when you have an 8 year old who is dependent on you as much as a toddler would be, as well as two teenage boys, that is not a good way to feel.

With the tiredness comes a lack of patience.  I am usually a patient person, with a very, very long fuse.  I am skimpy with praise for myself, but I feel I can say I'm more patient and less likely to lose my temper than most people.  But that is being tested.  Today, several times, I snapped at Janey.  I rarely do that.  I know she is generally doing the best she can, and the things that she does that make me annoyed are not her fault.  But today, I wasn't able to not snap at her.  It was mainly over her just not responding to what I said.  I asked her to come over to get her pullup changed and her clothes on.  I asked again, and again, and again.  The fifth time, I yelled.  She looked startled, and did come over.  Later, when it was time to get her coat on, same story, and again, after a bit, I yelled.  Freddy said "You are getting upset with Janey today a lot"  It was noticably not like me.  It's not how I want to be.  But on days like today, I just see no end, no rest in sight, never.  I still need to do so much for her that most 8 year olds would do with ease.  I can't tell her in the night if she wants to be awake, she has to take care of herself.  I can't do anything but watch her when she is awake, in the daytime or nighttime.  I got distracted today with the exciting joy of putting up some charity calendars I bought at a thrift store.  It probably took 2 minutes, but that was long enough for Janey to find a huge glass and pour a whole 2 liter soda in it.  Of course it overflowed, especially when she stuck her hand deep in the class for some reason.  She was soaked, the soda was wasted and I just felt like giving up.  The whole time, I was in audio range of her, as she talked to herself.  It's not like I'm running down to the neighbor store to buy things.  This is when she is right there in the next room, but I guess next room privileges are more than I can have right now.

So, we go on.  We dread the phrase "I don't know how you do it", because I don't know how I do it, either.  I do it because, really, what else can you do?  We all do it, the tribe of autism mothers.  No matter what ways our views might differ, we all are together in doing what appears to the outsiders to be not doable.  It's reminding me of cartoons, where when a cartoon guy runs off a cliff, he's fine until he sees what he's done and looks down, and then he falls.  I guess we shouldn't look down.  We should just keep running, and not realize there is no surface below us, a lot of the time.

How do I react to hitting?

Lately, Janey has been hitting me.  I don't think she hits anyone else, but when she's angry or frustrated or told to wait for something, she's lashing out by pounding on me.  She doesn't hit hard enough to hurt me yet, but obviously I don't want this behavior to continue until she can hurt me.

I did a quick search today for autism and hitting.  I was a little underwhelmed with what I found.  Almost all the "expert" advice I could find seemed to be pretty useless.  Much of it dealt with trying to understand the underlying reasons for the hitting.  I think I know the reasons---it's hard for Janey to talk, she gets easily upset, she sees me as what is standing in the way of her getting exactly what she wants when she wants it, so she hits me.  The advice on how to deal with the hitting all seemed designed to keep parents from hitting back.  I strongly don't believe in hitting back.  I am not about to do that.  It doesn't teach kids not to hit to hit them.  The alternatives they gave were not ones that work---time out, calm voices saying "we don't hit", giving something alternative to hit, ignoring the hitting.  They are safe alternatives, but they don't stop the hitting.

My view is that I need to do something about the hitting that does two things---it stops the hitting in its tracks and  discourages hitting in the future, and it's a natural response---one that I can do every time.  I don't think Janey has the self-awareness or forward planning to be think through not hitting in any kind of complicated way. I need to STOP the hitting, to prevent it from getting worse, to keep it from becoming a habit.

To stop the hitting, I need to do something Janey doesn't like when she hits.  She doesn't like loud, sudden sounds.  So I am trying looking her directly in the eyes and saying very loudly, almost yelling "DON'T HIT ME!"  Then, I walk away.  I don't give her what she wants, or any more attention until she asks me a way that doesn't involve hitting.  Of course, I still need to be watching her, as I always need to be watching her.  This works for me.  It's a deterrent, it's honest, it expresses my feelings, it doesn't involve any hitting back, it doesn't give her what she wants for doing something negative.

I am mixed about making Janey say she is sorry.  It's pretty fake---she isn't sorry, I don't think, except sorry that she didn't get what she wanted.  But on the other hand, we need to learn to say things that society demands.  We teach Janey to say "Hi!"  We all say "How are you?" when we might not care how the person is.  So we can learn to say "sorry" as a word that is used after you do something mean, even if the emotion isn't all there.  I tend to wait a little bit, until we both aren't as angry, and then ask Janey to tell me she's sorry and with a lot of prompting, she usually does.

In this case, I believe in treating Janey much as I treated her brothers.  When something like hitting is involved, it's important to deal with it clearly.  Long talks about why it happened, long calm discussions---they just don't work.  Kids need the clear message that hurting people is not acceptable.  Recent events back that up.  So far, it seems to be working with Janey. We'll see how it all plays out, like with everything else to do with her.

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.