Impossible things happen every day

 As I write this, it's nearly 11 pm, and Janey is wide awake.  Not an uncommon thing, to be sure, and I'm pretty sure she's not going to sleep at all tonight.  We've learned to tell, over the years, if it's going to be a sleeping night or not.  

What I've been thinking about a lot over this past month is how Janey's kind of sleep issues just are not much addressed in any kind of sleep advice I've ever read.  And I think that's because sleep experts, or parenting experts, or autism experts, unless they have a child themselves with Janey's kind of sleep problems, just don't believe us as parents.  

And it's not just sleep, I've realized over the years.  I don't think the experts believe how much the wrong food can affect Janey.  I don't think they believe that she can know so many words but be able to express herself verbally in such a limited way.  I don't think they believe that it is impossible to fully toilet train her.  I don't think they believe she can show physical illness in the ways she can.  I don't think they believe the extremes.  

Or if they do, they don't know what to do with the kind of extremes we as parents deal with.  It's easier to just discount what we are telling them and dealing with than to accept there might be areas they aren't up to helping with.

With the sleep---Janey can and has literally gone 3 nights with a total of 4 hours of sleep.  Not per night---TOTAL over the three days and three nights.  And she can still function---in fact, can still be jumping up and down and giddy on day three.  This happened over Christmas break, and it's happened before.  Before the break, we saw the other extreme---a two week period where Janey slept pretty much all day and night.  She came home from school and went to sleep, she woke up enough to sleepily go to school, she slept off and on there, she came home from school, ate a lot, and went to sleep again.  We tried near the end of these 2 weeks to talk to her pediatrician, to see her, but before that was possible (with the COVID surge, sleep issues are a low priority), the spell was over.  It was like she decided to catch up on all the lost sleep of many months, and once she did, she went back to little sleep.

With words and speech---I don't think any speech expert has ever really gotten what I've tried to explain about Janey.  She has the words, in her head.  But she can't access them easily.  One of the only ways I know she DOES have the words is the rare time I've caught her in exactly the right mood to do flash cards.  I ask her if she wants to, and if she does, she will name things that amaze me.  Recently, she identified a swan, broccoli, a lime, a skyscraper, a slug, a person crocheting---all within about a minute, all words I've never once heard her say before.  But the advice I've gotten or read to encourage speech never addresses how to help her retrieve the words she knows.

And toilet training---that's enough to set me off on a rant.  How is it that Janey has at several points been fully trained, only to lose the skill?  How is it that most of the time, she is trained at school but not at home?  Why does she often need what I'll call a severe change in the night, when she's been asleep?  You can write a hundred expert books of advice about motivation, about routine---those aren't the issues here.  Believe me, if expert advice worked for Janey in that area, we'd have been done with this particular problem many years ago.

The example of Janey not lining up with what is said to be possible that most haunts me---Janey motionless in bed in the hospital.  A doctor shaking the bed.  Janey doesn't move or make a sound, and the doctor says, almost with a chuckle, "well, she certainly doesn't have peritonitis!"  But she did, as a result of an appendix that at that point had been ruptured for two days, and would be ruptured another day before finally, she had life saving emergency surgery.  But someone with peritonitis CAN'T keep from screaming and moving when their bed is shaken.  They just CAN'T---unless they do, as Janey did.

My fellow autism parents are reading this with their own lists in mind of the "impossible" things their beloved kids do or don't do, I'm sure.  I'm preaching to the choir.  But why is it so very hard to get believed?  Is it because it's easier to give advice based on what you think is true, not what some crazed parents is telling you is true?

This is why I try very hard to not discount what others might think, in all areas of life, to be impossible, insane, foolish.  I know what it's like to be awake night after night caring for a child that can't possibly not be sleeping, to be astonished by the words my minimally verbal child is saying with ease, to have a critically ill child not being treated promptly because she is reacting in an impossible way.  Listen to parents, especially when they are speaking for children that are impossibly complex.  I love you, my incredible Janey.

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.

24 hours without sleep

Remember all those times I said we'd had the toughest night ever with Janey?  Well, forget all those.  Last night holds the new record.

It really started night before last, which I wrote about here.  She slept very little that night, and woke up for good at 5:30 in the morning.  She wasn't extra upset or screaming a lot, just awake.  And Sunday wasn't a bad day at the start.  We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose.  We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it.  Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep.  By 10, when she was still going strong and starting to get cranky, I asked Tony to take over.  I slept a couple hours, and was woken up around midnight by Janey's screaming.  She hadn't slept at all.  Then the fun really started.  From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.

I can't imagine how tired Janey must have been at that point, but I know how tired I was.  I made coffee three times, in a desperate bid not to give into sleep.  She didn't even drowse off for a second---just screamed.  A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them.  She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream.  I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.

Tony got up about 4.  By that time, we were both in a state that is hard to even describe.  It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good.  But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take.  We kept counting the hours she had been awake.  Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it.  I don't think she really slept until about 6.  And she slept...2 hours.  Until 8.  She has been awake since then.

Today has featured a lot of screaming, with some quieter moments.  She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.

Where do we go from here?  I have no idea.  She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep.  I am starting to feel like they do very little.  We are giving her melatonin, which we have not found to do much of anything.  We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect.  As much as I was possibly able, I was consistent in my approach to her.  We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that.  Our friends and family are not up to taking her for a night.  The only respite we've ever found was a bust---not able to provide enough care for Janey.  I really, truly don't know what can be done to help her and help us.  I guess we just keep going.

Last night, in my desperation, I looked on Google for "autism" and "screaming".  Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming".  I am trying not to swear here.  I'm not a swearer.  But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night?  They try to figure it out.  What do the "experts" think?  That we just say "Boy, I can't stand that stupid screaming and crying.  Obviously it means nothing, so I won't try to interpret it!"  Maybe the most telling thing was that in my searching, I found several of my own blog entries from here.  It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers.  If you are one of those parents, I'm sorry.  I know what you are feeling, but I don't know what to do.  I don't think anyone really does, for what that is worth.

You catch more flies...

You catch more flies with honey than with vinegar.  That's a phrase I heard often from my mother, and it's a true one, one I try to keep in mind.  Sometimes, with Janey, it can seem like it just doesn't work.  Nothing seems to work---honey, vinegar, being patient, being strict, being anything.  But I was in despair over the seat belt situation, and decided to try some honey therapy.

I thought about what has worked in the past to keep Janey happy in the car.  The unbuckling mostly seems to happen when Janey is upset or restless, and wants something I can't get her while driving or in the car at all.  It follow that if I keep her happy and occupied, she will be more likely to stay in her belt.  So I downloaded a whole bunch of versions of her new favorite song "Turn Your Radio On"  I wish there were more versions even of it out there, but I found 7 or so.  Then I stocked up on her favorite car snacks---Pringles.  I decided that during the drive, we'd keep her music playing and her snacks flowing.  I did that for the last few rides---success!  Janey was happy and content, and no seat belt taking off!  I praised her heavily after each ride, which usually doesn't seem to affect her either way, but in this case, maybe because I had been SO loud and angry about the unbuckling, seems to make her very happy and proud.

I don't pretend the problem is solved, but my point here kind of is that once again, I had to learn the lesson that Janey is not typical, and that I can't always follow typical kid rules with her.  You would really think I'd know that by now.  But I was feeling angry and upset over the seat belt, and I didn't feel like "rewarding" her for bad behavior.  What I wasn't keeping in mind is Janey doesn't think that way.  She doesn't do things to please me, and as a converse, she doesn't do things to make me angry.  She doesn't manipulate, or at least not in that complex a way, I don't think.  She certainly wasn't thinking "I'll be bad with my seatbelt for a few days, so I can get Mama to do anything to keep me happy, and then I'll score some good tunes and snacks" She isn't thinking that way.  I have to, at this point, do what works, without worrying about whether it's Parents Magazine approved, because Janey isn't Parents Magazine approved.  She doesn't follow the rules, so I am sometimes forced not to, either.  I need to be able to drive without fear, and so I will do what it takes.

And in case this way doesn't keep working, I have to thank my great friends, Michelle and Julie, both of whom are sending me different kinds of seat belt locks and harnesses!  I am the luckiest person on earth when it comes to friends, I truly think.  I am humming some Beatles in my head, getting by with a little help from my friends.  It seems appropriate.  At times when I am just plain overwhelmed, when I can't even think straight from stress, my friends have always helped me get by.

So, I'm preparing for today's drive.  We'll listen to some old time gospel and eat ourselves silly on unsuitable snacks, and we'll get by.

How do you solve a problem like night waking?

For the last week, Janey has woken up every night around midnight or 1 am, and stayed up for a couple hours.  It's incredibly tiring.  Because I am eternally hopeful, I went internet searching for solutions to this problem.  Big surprise---the ideas I found would not work with Janey.  It makes me feel like some kind of defeatist who somehow relishes being able to complain.  Growing up in Maine, that kind of attitude was not greatly admired, as so I think I worry too much about appearing that way.  Believe me, I wish there were solutions for more of the issues with Janey.  I'd love to have solutions.  But the most helpful thing I found in my research was actually just reading that lots of other parents of autistic kids have the same problem, and are at the same loss as to what to do.

The problem with the autism-specific ideas that I found was that they were, as I often find, aimed at higher functioning kids than Janey.  A big theme was just accepting the waking, and letting the child play on their own so you could still sleep.  That would not work.  Janey can't be unsupervised.  Not for a minute.  So if she is awake, we must be awake, one of us, anyway.  Thankfully, I have a husband who shares nighttime duties with me (and probably does more than his share), or I would have long ago gone to the place that mothers go that just can't do it anymore (and I'd like to know where that place is, as I might just have to visit there some day).  Another idea involved pictures, or diagrams, or a clock with a sun and a moon on it, to explain why we don't get up in the night.  Yeah...that is not going to work.  If I could explain things like that to Janey, she'd probably be at the level that she could be unsupervised in the night. A few places suggested medication.  I am not adding any more medication to Janey's routine, and even if I did, they didn't sound hugely effective with night waking, more with getting to sleep in the first place, which isn't Janey's problem.  She goes to sleep just fine---better than most kids.  She goes to sleep TOO fine, often---too early and too deeply, and gets the sleep she needs to get over that edge, better to be bright and cheery and raring to go in the wee hours of the morning.

I think there is something in Janey's brain to do with sleep that is just different.  When she wakes up, and it's dark, it doesn't seem to trigger in her that she should go back to sleep.  She must see that it's dark, and that we don't seem as lively as we do in the daytime, but the way she acts is exactly the same as she acts during the day.  She'll ask us to cook things, she'll ask for TV, she sometimes asks to go to the store, or to school.  She'll put her shoes on.  We sleepily tell her no to those things, that's nighttime, that we need to still sleep, and she might echo back what we say, but it makes no real impression.  It doesn't seem to matter what we do or say.  She'll go back to sleep when she's ready to go back to sleep---usually about 3 am.  Then she sleeeps until 5 or 6, when she's up for the day.  She almost never naps.

One place I read said their child does the waking up just in the winter.  I think that might be partly true---I should try to figure that out.  They said they think it's tied to exercise during the day, but it could also just be part of a seasonal cycle, as many things seem to be with Janey.

As I wrote yesterday, Janey is in a very cheerful pattern lately.  The sleep is tough, but compared to the crying all day times, it's not terrible.  I nap during the day if I have to, Tony goes to bed very early if he has to.  We manage.  But it's another thing I project into the future about.  What will happen if Janey learns to wake without waking us up---if we are out cold and she wakes up and gets a notion to do something dangerous?  We are light sleepers, by necessity, and she always wakes us up if she's up.  But if she doesn't, someday, that's the really scary part.  And I'm too sleepy today to deal with that thought.

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.

Evaluating Janey

I'm taking a break from my series about all the possible ways Janey became autistic to write about yesterday.  We had a meeting with what our health plan calls Developmental Consultation Services.  In essence, it was a meeting with a developmental pediatrician.  We had sent her a lot of information about Janey---old IEPs and other evaluations, medical records, etc, and I filled out lots of forms about her.  I had talked to a social worker on the phone about what I felt I most wanted from the service.  I told them I wanted an accurate read on Janey's measurable intelligence.  I feel like that's something I haven't been able to get.  I know she has scattered skills, highs and lows, but I'd like to know where she stands based on regular testing, because I'd like to get an idea of what she is capable of, so I can best plan what kind of education would be best for her.  I don't want her spending years and years trying to learn letters or shapes or colors she can't learn, while she could be learning more practical things, or enjoying the things in life she IS good at.  The doctor was very nice and competent seeming, but explained that she wasn't fully qualified to do testing like that, but she'd do a little testing to help me get an idea.  She did two types of tests with Janey---one where Janey had to point at one of four pictures to answer questions, like "Which bowl is full?" or "Which animal is big?" or "Where the triangle?"  The other was a test of skills like building a block tower or stringing beads.

Janey co-operated fairly well for the first part.  She was engaged, she echoed everything that was asked and she pointed to a picture in every case---not always really trying, I don't think, but doing what she thought she was being asked to.  She did better in some parts that I would have guessed, but not as well in other parts.  I have no idea how it will be scored (we go back in 2 weeks to hear about that) but it was interesting to watch.  She was less engaged by the part that required fine motor skills, which surprised the tester.  She noticed that Janey is more verbally oriented than you would guess for a girl that doesn't talk much, and remarked that is a bit unusual for an autistic child.  It's the whole "She's supposed to think in pictures, but she thinks in words" bit.

A few things bugged me.  One was that the testing book they used for the first part was spiral bound, and the spiral was half off the binding, creating an enticing Slinky-looking toy in Janey's eyes.  She couldn't keep her hands off it, and that interfered with the testing.  I can't understand why someone that tests autistic kids wouldn't realize that would be a problem and fix it.  It wasted time and Janey's attention constantly reminding her not to touch it.  Another was the stupid toys in the office, that were supposed to engage Janey while we talked.  They were not suitable for kids with special needs.  How hard would it be to get babyproof type toys for the toy box, since you are going to be dealing with kids that probably mouth toys?   But that's just a little blog ranting!

In talking to the pediatrician, I got the feeling she was not a huge fan of inclusion or of Janey's school, which she has visited.  She said she felt often that separate classrooms better served kids like Janey, with significant needs.  That is something that might be true from a strictly academic viewpoint, and I tried to explain to her that that is one of the reasons I want to know what Janey is capable of.  Truthfully, regardless of that, I would not move Janey to another school for almost any reason.  It's partly for the same reason I picked schools for my boys, but even more so for Janey.  Janey is happy at school.  She is loved there.  Although I know that with autism, there is supposed to be a sense of urgency about the early years, and I shouldn't think this way, but I think the main goal of elementary school is to have kids learn to be around people, learn to trust adults, learn to interact with others, and start, just start, learning academics.  There is a lifetime for serious work, and believe me, once kids ("regular" kids like the boys) are in high school, there is PLENTY of hard work, far more than I ever had.  For someone like Janey, who is not going to have a career, barring miracles, I find it even less important that she be learning as much as possible every moment.  I am going to start worrying more about that when she is in 6th grade or so.

The other reason I'd not consider a change is how Janey reacted to missing a day of school, which she hardly ever does.  She DID NOT take it well.  Last night was the worst night in probably 2 years.  She was hysterical, completely overcome with screaming and crying and fury.  She woke at 3, still very upset.  She understood---William and Freddy are at school, but I'm not.  I of course tried to prepare her, to talk to her, but her worry and fury is not verbalized or able to be helped by talk.  It's the routine.  For all she knows, we are never going to school again when we don't go for a day.  And that is NOT RIGHT, in her eyes.  I'm going to try hard not to ever schedule an appointment during a school day again.

Overall, yesterday did something interesting for me.  It made me realize I am getting more confident about my knowledge of Janey and my vision of what I want her world to be like.  I'm able to say more definitively what I want for her and don't want.  I am less swayed by "experts", even kind and knowledgable experts like the doctor yesterday.  It was an interesting day in that way.

Life without a handbook

I'm a believer in handbooks. I like to read what others advice. I am not one to jump into new things without studying them first. A trip for which I'm prepared is much more enjoyable to me than one I just happen into. So when I had kids, I read everything I could get my hands on about pregnancy, childbirth and then raising them.

It was not long at all into my first pregnancy that the books began to fail me. Although I was reading over and over how very rare pregnancy complications are, my body and my doctors were telling me otherwise. I read about the importance of exercise during pregnancy. My doctors told me at first to stay off my feet as much as possible, and then to stay in bed all the time. When William was born two months prematurely, it again threw off every book. I tried adding two months to every landmark he was supposed to meet, and still, he seemed stubbornly unable to stay between the navigational beacons. He sat and walked far later than he was supposed to, and he started saying words far, far before he was supposed to. I brushed off his clear "Daddy" when he said it at 8 months, which was 6 months corrected, until I realized he said it whenever the phone rang, as it was usually Tony calling. He just kept adding words from there, and not sitting up, and never liking the foods he was supposed to, and generally doing everything with total disregard for any guidelines.

But still---I read the books, although I was starting to suspect they didn't know all they thought they did. Freddy barely talked at 2 years. But somehow, I knew he was going to talk just fine when he was ready. I didn't worry, and I like to worry beyond almost anyone. Now, I doubt there are many people on earth as good at talking as my Fred. He's thinking of a career as an announcer, and has already gotten some offers along that line.

And then Janey. By that point, I had pretty much realized that either the handbooks didn't know much, or I just had a knack for raising kids who liked to confound me.

However, with the last few incidents of store-crying, I decided there must be something out there that could help me. I went two different routes. I looked up store tantrum advice for toddlers, and I looked for store crying advice for autistic kids.

Well, you can guess what I have to say about that. The central theme of everything I saw was explaining to your children. Evidently, if I told Janey what to expect in the store, stayed calm when she freaked out, and offered her a treat if she could keep her cool, she'd be just fine. There's a few problems with that. Janey probably understands more than we think, but she in no way understands enough to have a store experience explained to her. And the places she has freaked out are not new places, they are places she's been other times without an issue. She is not patient. She can't wait ten seconds when she wants something without breaking down. I can just picture how it would go over if I told her "don't cry or tantrum for the half hour we are in this store, and I will get you chips" She'd hear one word clearly---chips. And want them that second. And cry all the harder without them. As for me staying calm---I try very hard to do that. I might be able to, if I am in a store absolutely alone. But with every single eye staring at me, and some people feeling they must offer advice or show their disgust---well, I'd like to see anyone stay calm.

The autism-specific advice all tended toward kids with much more verbal ability and level of understanding than Janey. I can understand that. If I felt like writing some autism advice, it would be a lot easier to write it for higher functioning kids. I'm starting to suspect the truth. There is no advice that really works consistently when dealing with lower functioning kids with autism. There are stop-gap measures, like hugging her or giving her food instantly, and there are very long term measures, like having her learn more language through school and ABA. But the middle-term measures that would get us through a store trip, or a middle of the night scream---they don't exist.

And so I'm left living without a handbook. Sometimes I think I'd like to try to write one, but then I realize anything that might work for Janey might not work for any other kid "like" Janey. I put like in quotations as there is no other kid like Janey. That is true for all kids, but like how Orwell said some animals are more equal than others, some kids are more unique than others. If you are a fellow member of the club of parents of low-functioning autistic kids, you can wear that as a badge of pride. You've got yourself a kid that you are the expert on. No-one else really gets it. Whatever you are doing for your kid is most likely better already than any expert could teach you. It's taken me a lot of years of parenting to accept that I'm the expert on my own kids.

Not proud of myself

Sometimes I don't like how I feel my personality has changed since facing autism with Janey. Today was an example. I was in a Borders book store, getting books Freddy needed for school. Tony wanted to look around a little, so I took Janey to the kids section. There was a very pregnant lady there with twin toddlers, about 2, a girl and a boy. The girl was extremely advanced (or very short) and was eager to show Janey a book she was holding. Janey of course showed no interest. The girl toddled over and got another book just the same to show Janey. Janey took it, but then decided she wanted the little girl's copy, and tried to grab it. I of course stopped her. The mother had a look on her face like "what a little brat, and dumb to boot" She said in a fake cheery voice "Let's say goodbye to this book area---not everyone likes to share" I felt as I always do like grabbing her and telling her all about Janey. The little girl didn't want to leave---she wanted to interact with Janey. I could almost see the mother thinking "why is she wasting her time with that girl?" Finally she told them they had leave. The boy had no said a word this whole time. I went to pay, and she was behind me in line. All of a sudden, things went to hell with her kids. The boy just started screaming, a wordless scream. I thought instantly---autism. It had ever crossed my mind just looking at him earlier. Of course, who knows, but I think you develop a sense for that. The mother talked to both kids in a very "I've read all the latest parenting books" way "Can you tell me what's wrong? I need you to be quiet. We are in line for a few minutes. Oh, look at that book there!"---you could hear her thinking "Use 'I' statements! Give a time limit. Distract!" None of which work well with you are faced with an autistic meltdown. And I thought to myself---I need to let her go ahead of me in line. There is no need for her to wait any longer. She is in a tough situation, regardless of how she acted earlier. She has a long road ahead of her, whether she knows it or not. But until the very last minute, I felt...smug. I felt glad she was having a hard time. I felt mean things. Finally, I told myself to be a little Biblical about this. Do unto others, and all. So when it was my turn to check out, I waved her in front of me. She was very grateful, and, I hope, a little chagrined about her behavior earlier. I don't know that last part. I still felt angry, but I tried to tell myself---no-one understands, until they do. I don't want to feel mean and angry because people don't understand Janey, because people think that textbook parenting can work on all kids, because people live in their own self-satisfied worlds a lot of the time. I want to be a kind, understanding person. Is that going to be another thing lost to the realities of autism?