The kind of autism that isn't talked about

As a lot of you might already have done, I read this essay recently.  If you haven't, you might want to read it.  (Link here)

I don't agree with everything said in the essay.  I don't agree that more awareness necessarily would result in less isolation and less lawsuits.  I don't quite agree with how depressing a picture is painted in terms of the numbers of non-talked about kids with autism.  But those are little things.  In general, I agree very much with what is said here, and I applaud the author, Bonnie Zampino, for having the courage to say it.

And I ask myself, why?  Why is there so little awareness or discussion about the type of autism this author's son has, and my daughter Janey has, and so many of the people who read this blog have children with?

I can think of a few reasons.  One is that most parents don't like to present their kids in less than flattering lights.  I'd far rather write a post about some step forward Janey has taken than write about parts of the everyday that are far more depressing---the fact she is 11 and not toilet-trained, the fact she screams and cries part of most every day, the fact she bites her arm so much it has a permanent scar, the fact her communication skills are so poor she suffered with a burst appendix for three days without treatment, unable to tell us how she felt.  I want others to love Janey as I love her, and I am always conscious of not making her "look bad".  And I don't want to appear to be trying to make people feel sorry for me.  I'm very aware of that.  I want people never to feel I am looking for sympathy.  That's my own issue, but I think it affects other parents too.

Another reason the tougher side of autism isn't presented more in the media is because it's not a feel-good story.  I read something recently about those ads on TV trying to get you to sponsor a hungry child, and how they don't generally show starving children.  They show cute, somewhat thin children in piles of trash.  People tend to tune out if they are overly depressed by what is being presented.  It's a lot more appealing (and probably gets higher news ratings) to show the kid with autism winning a spelling bee, or going to the prom, or playing the piano perfectly by ear than to show a child biting themselves or others, or screaming for hours, or banging their heads.  People would be upset by that, and tune it out, most people anyway.

Also, I think people like stories with a villain.  I think that is a lot of why the whole unproven autism/vaccination story had far, far more than its 15 minutes of fame.  It's a villain story--the evil government and medical community poisoning our kids into autism.  The fact that in the vast majority of cases that is not what happened doesn't take away from it being a good story, one that celebrities latch onto.  I've heard that some groups go as far as saying there aren't any adults with autism, because that muddies the story---if autism wasn't caused by too many vaccines, how could those adults have gotten it?  A child with a severe disability that just seems to sort of happen isn't a story we can feel outrage over.

The reality of children like Janey is something that people are not prepared for.  I've had the experience a few times that I am sure a lot of you have had, when Janey is met by someone who hasn't before met close up a child with autism, the experience of watching their expectations crumble.  They expect to be charmed by her quirky and interesting take on life, to form some kind of pure and beautiful connection with an otherworldly, unique child.  When they are faced with the real life Janey, most likely screaming and biting herself, maybe wet from a soaked pull-up, not answering questions or showing any interest in them, or perhaps showing too much interest, wanting them to play a clapping game for an hour on end---they get the stunned look.  I have become very familiar with that look, the look of someone realizing for the first time what autism really looks like.

It would be fine for most of the world to continue to have their sanitized view of autism, if that didn't mean that they weren't preparing for a future with a lot of Janeys in it.  Whenever people vote down money for group homes or moan about how much is spent on special education or continue to support organizations that give almost no money for actual direct care of the Janeys out there (yes, Autism Speaks, I'm talking about you), they are building a world that is going to be in for a huge surprise when someday, the Janeys are no longer able to be cared for at home.  People like Janey exist.  They are out there.  They matter.  I am going to try hard to be one of the voices that DOES talk about the other autism.  It's what I can do, from this little corner, tell my own story and hopefully, be a voice for Janey---my  beloved daughter with the kind of autism that isn't talked about.

Three Surprises in Ten Minutes

Janey has been tough lately.  She's been wearing us out, trying out patience, discouraging us a good deal.  Last night was no exception.  She was cranky, volatile, angry, and we were tired out of our minds.  And then, within a very short period of time, she surprised us with her unique and her quirky language three times, and left us laughing instead of crying.

The first incident stemmed from her love/hate relationship with "Little Bear".  Little Bear is one of the mildest TV shows you could ever watch, a sweet story of the adventures of a human-like bear, his family and various other animal friends.  We really don't get why Janey is so worked up by it.  She asks to watch it constantly.  When we put it on, she will watch about 5 minutes of it and then blow up, always.  She freaks out spectacularly and gently or not turns off the TV.  Last night followed that pattern.  She asked for it, we said as we always do "But that show makes you very upset!  Do you PROMISE not to hit the TV or scream if we put it on?"  Yes, we are suckers.  We know her promises are not sincere, but we give her another chance, over and over.  We put it on, and the same thing happened that always happens.  She screamed after a few minutes and slammed her hand into the TV to shut it off.  Tony told her to go to bed (it was close to bedtime) and said "I am not proud of you!"

That's when she surprised us.  She said back, in a voice familiar to parents of preteens everywhere "I am not proud of you either!"  We looked at each other astonished, and couldn't help starting to laugh.  It was so unexpected, but at the same time, so typical of a child her age.  I'd never heard her use the world "either" before, and she rarely responds to anything in that kind of sentence.  We were frankly delighted.

However, she was still supposed to stay in her bed.  We lay down with her, trying to get her to sleep. She faked being ready to sleep for a few minutes, and then surprised us the second time.  Using a sing-songy silly voice, she said "I have to go potty.  I want to make a stinky.  I need to make a poopy.  I want to have a....(imagine her going on and on for about 10 different words that are euphemisms for needing to use the bathroom)"  We had no idea she even knew some of those terms.  And we were fairly sure she didn't actually have to use the bathroom in that way, as she already had just a bit earlier, but she knows the one thing that will always allow her to get out of bed.  So I took her in, and of course, it was a ruse, but still...we again were shaking our heads and chuckling.

When she was back in bed, surprise number three came along.  She said, in a slow and careful voice "acetaminophen".  We had given her generic Tylenol over the weekend when she was banging her head and it appeared she had a headache, and she had learned the name somehow from our talking to each other.  We asked her if she wanted acetaminophen, and she said yes.  We were, again, shocked.  It's not an easy word, and not one she's heard a lot.

All three of these happenings illustrate what is so fascinating and at the same time frustrating about Janey.  She doesn't learn in traditional ways.  You can plug away at trying to teach her the most basic things for literally years, and she shows no sign of having learned them.  Or she learns them and then seems to forget them, like with writing her name.  But inside her head, there is so much going on, and when the time is just right, it comes out, giving us a tantalizing glimpse of a Janey we wish we could see more often.

The snowiest week in Boston history---some notes

The past seven days have broken the Boston record for snowfall amounts, by 10 inches.  Needless to say, there hasn't been much school---one day out of the last 5.  Janey is home again today.

How is it going?  Well, not as badly as it might be.  Not great, but not terrible.  As an old friend said on Facebook, Janey's in a routine now---a no school routine.  She gets used to things after a while, and the routine now is to have Mama and Freddy and often Daddy home all day, staying in the house all day or possibly taking a little ride.  It's been too cold or too snowy to play outside and enjoy the snow, and even Janey's favorite little walk, to the convenience store near us, is impossible.  So she's home.

What have we been doing?  Janey has gotten back into videos and TV some, which only another autism mother can truly appreciate as a great thing.  It pains me to write that, but it's true.  When you have a child who is interested in very little, it can be extremely hard to keep her happy all day when she's stuck inside, and if she gets too upset watching TV to continue---well, that's a big challenge.  For a while, anything on screen seemed to after a few minutes upset her, but lately, she's watched a full 30 minute video or TV show a few times.

We've been doing a good deal of reading, too.  I love this.  I bought some new Mother Goose books (new to me, on Amazon) and Janey has taken to a few of them.  She loves Mother Goose, as it's predictable, and I love it, as there are so many versions of pictures for them I don't get bored.  We read through a long treasury twice last night, and Janey knows every rhyme by heart.

Tony has been home a lot of the time, and he's done a lot of cooking for Janey.  This is one of her biggest joys.  He makes her homemade chicken nuggets, "celery" (any kind of greens pan-fried), pesto, homemade salsas, eggs, bacon---pretty much whatever she wants.  She loves the whole process.

Of course, there has been some hitting, kicking, biting and so on.  We are still struggling hard to figure out just how to handle this.  For a while, we were having success with time out in the bathroom.  However, Janey has started to like this time out.  The other night, she asked to go into the bathroom (not to use the potty, which she isn't doing lately).  I was trying to get her to sleep, and said no.  So she very deliberately hit me, and then looked at me as if to say "NOW we'll go in the bathroom!"  I said "We don't go to time out in the bathroom if that is what you WANT" which I am sure confused her, but I was half asleep and couldn't think of a better thing to say on the spot.

More, we are realizing that Janey's need for predictable responses extends to her aggressive behaviors, although it's hard to know what to do with this knowledge.  Last week, Tony, Freddy and I were watching the neverending blizzard coverage on TV.  We were all bored of it, but too lethargic to turn it off.  Janey went over and turned off the TV.  This almost always gets a quick response from us, but none of us said a word, because none of us cared.  Janey stood there for a minute, looking at us, and finally said "That was a VERY naughty thing to do!"  We had not followed the routine.  But how do we use this knowledge?  Most of the time, her turning off the TV is NOT something acceptable.  We have to let her know that's the case.  But if she's doing it even partly just to get a response that's predictable, are we re-enforcing that behavior?  Who knows?  What can we do?

Hopefully, there will be school tomorrow.  And that will be an adjustment for Janey once again.  I can't imagine what life feels like for her much of the time.  She doesn't understand so much of it.  Sometimes there's school.  Sometimes there isn't.  Sometimes we can walk to get ice cream or go get a Happy Meal.  Sometimes we can't.  Sometimes turning off the TV is very naughty.  Sometimes no-one seems to care.  Sometimes everyone is awake and ready to cook, to read, to talk.  Sometimes it's dark and nobody wants to do anything.  That is life, but it's very hard for Janey to understand.  When I keep that in mind, the anger and aggression makes a little more sense, but it doesn't make it any easier to handle.

Kind of sort of toilet training

I used to dream a lot of the day I could say "Janey is toilet trained!"  I pictured it like that, a certain day, a day I could leave pullups out of our budget forever and buy lots of cute underwear and just look back at the long, long years of non-training and laugh.  But like a lot of dreams when you have an autistic child, it isn't quite coming true like that.

Janey is sort of trained.  I feel like knocking on wood even saying that.  It's better than not trained, for sure.  But it isn't complete, and I don't know when it will be.  Gradually, gradually, gradually, over the summer, Janey figured out how to use the potty---not the regular potty, but one we set up for her in the living room.  We have only one bathroom and it's quite removed from the rest of the house, back through William's bedroom (we have a pre-Civil war old house, and the bathroom was an afterthought, I think) and with Janey's propensity to do mischief (which, not to get vivid, has included playing in the toilet), we needed something closer for her to use.  That itself went against any guides I read, but those guides don't know my house or my Janey.  Janey seemed to finally get the feeling of having to pee, and how to release the pee in a potty.  She was always able to hold it, that was never the problem, but the crucial releasing step seemed to kick in.  Over time, she was hitting the potty once, then twice, then on some days 3 or 4 times.  But almost every day, she also didn't hit it once or twice.  She also seems to have no control at night.

When school started, she went back to her pattern of holding in pee a lot.  But even there, I am getting more reports of her successfully using the potty.  She has a wonderful aide in her room who takes her on a regular schedule, and once in a while, she'll actually go.  She's also used the toilet now and then in other situations---at other people's houses, for example.

But still, I can't proclaim her trained.  I've thought about just getting rid of the pullups, and over the summer, I tried that now and then.  But it seemed to send her backwards.  She would hold the pee all day, not wanting to have an accident but also somehow not able to get that wearing underpants would make it EASIER to use the potty, not harder, and then would pee all over the floor.  She seems finally to not like to wet her clothes, and the the nervousness of not having a pullup on seems to take over her mind---she usually cries when I put on underwear.  So for now, we still use pullups.  We still remind her, which sometimes works, but most of the time when she is successful, it's totally on her own.  So that dream moment is delayed for now.  And it might be delayed for a long, long time more.  Janey does things the way she wants to.  Nothing at all worked until she was almost 8, which when talking to other mothers of autistic girls, seems like the magic age.  It still seems like a miracle when she uses the potty.  So I'll take it, for now.  Like a lot of dreams, what you actually get might not be what the dream was like, but we live in reality.  Autism seems designed to remind us of that.

Janey is Six

Janey turned six on Monday. It's been a nice week. Tony is on vacation, we are all relaxed and pretty happy, and Janey has overall been a joy. I don't want to credit the medication, but maybe I should a little. She just seems a lot more relaxed. It's also probably just her getting older, and us modifying ourselves. I think my thinking changed this summer at some point. It might have happened over a few day period when three different people I respect all said pretty much the same thing in different ways---it probably makes no sense to spend lots of time and energy trying to teach Janey a lot of academics right now. We've been trying for a long time, and she hasn't learned and all of us get upset and worked up. I'm not giving up on her learning, I'm giving up on it being on our timetable. I have faith she will learn a lot, when she wants to. Just like she will be toilet trained, when she wants to. It doesn't work that way with "regular" kids, but I have to accept it is the only way it really works with autistic kids. The big difference is that they are not trying to please you. Almost anything you teach other kids has an element of having them do what you want to please you---to make you proud they get an "A", or go pee-pee in the potty, or tell you their shapes, or what have you. Janey doesn't live to please anyone. So when she decides herself she is going to do something, she will do it. I'm not saying you can't control her behavior at all. But the way it is controlled is by making HER happy or upset by what she does. So when we get mad at her for spilling all her Nestle Quik powder on the floor or playing in the litter box, we are making HER feel unhappy, and that is what she remembers. It's harder to think of a way to make HER happy she knows a letter or a shape. I guess I could get mad at her for NOT knowing them, but that's cruel.

And in making that connection, and giving up some of my expectations, she seems so much happier. And we are enjoying her---especially sometimes in contrast to her teenage brothers. It's fun to have someone that can get extremely happy over a bowl of oatmeal, or a 100th viewing of a video, or a trip to McDonalds, or a hug. It's sweet she wants to snuggle me when she's tired, and hear the songs I've sung so many times. It's exciting hearing what she chooses to say---if we aren't trying to make her talk in a "normal" way, every word can be a surprise treat.

And the OCD, don't tempt fate part of me has to temper all of this. I don't know how school will be, when it starts. I don't know how much of her happier attitude is medication induced. I don't know if this is just one of those unexplained good stretches, to be followed by an unexplained bad stretch. But I hope we are getting to really know Janey, and that is helping.

Planning skills

Janey loves whipped cream, and we sometimes give her a little mug full (like an espresso cup). Three times today, she got the whipped cream out of the fridge, found a little mug and found a spoon, and brought them all to me. I was impressed---it seems to me like that requires fairly complex thinking and planning ahead, which I wouldn't have guessed she had as much of as that shows.

Sunday was very exciting, as Janey ASKED to use the potty, sat on it for quite a while, and actully finally did pee in it! First time EVER she has peed in a potty. And it was more impressive it was her idea. Maybe I should have followed my instincts and let potty training be more driven by her. However, I certainly wouldn't call her ANYWHERE close to potty trained, but it's a step in the right direction.

Summer is STILL almost over

It seems sometimes like summer will last forever, which in my mind is NOT a good thing. I really have never, ever liked summer, and I still don't. I don't like the heat, the unstructured time, the isolation it seems to bring, any of it. I am always happier when things are in a routine.

William started high school on Thursday, and Freddy will start Boston Latin School (7th grade) this coming Thursday, and Janey will finally start kindergarten on the 14th. I hope the year goes well. She is in the class I wanted her to be in. More and more I can't really picture her fitting well into a classroom routine, since K2 will be a bit more structured than K1 or K0. Maybe she will surprise me. I worry about her biting at school, or crying until they don't know what to do and call me, or wetting through her pull-up, or all sorts of things. I hope she learns and has fun. I am very much looking forward to days to myself, getting more work done, etc.

Janey used the regular potty today, not to pee of course. We have more warning of the other bathroom need. Tony got her a insert seat and she used that well, but of course we put her on the potty, it wasn't like an independent use.

She has starting eating all her clothes, like William used to a long time ago. Her tops are full of holes.

She has gotten into Barney now, and likes him more than Kipper. I am already tired of the few videos we can find from when the boys were little. I guess it fits into her likes---lots of singing and dancing.