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.

Strange Attractors

Although Janey will often ignore things that you want her to focus on, once in a while, she is strangely attracted to certain objects.  She will find them wherever they are, and will resist all attempts to keep them away from her.  This year, it was one present under the tree.  It was for Tony, and was wrapped in the same paper as many of the other presents, was a simple box shape, was nothing that stood out in any way.  But as often as I put it back under the tree, she took it out, held it and then moved it to a new place.  She didn't try to open it---she just was drawn to it in the wrapped form.  Today, I realized Tony never opened that present, because by Christmas it was no longer under the tree.  It's no longer anyplace that I can locate.  It's very possible that it wound up in the trash, as sometimes that is a place Janey puts objects she is interested in.  I got a brand new pair of sneakers a few years back that she took a fancy to.  I only wore them once before one of them disappeared, and despite a housewide search, was never seen again.  I think it had that same fate as the present.

Lately Janey has been drawn to my camera.  I tell her "THAT'S A NO!" in a loud voice whenever she gets close to it, but usually if she grabs it, she just holds it.  I had no idea she actually knew how to use it, not until a few minutes ago, when I heard a tell-tale "swoosh" sound it makes to imitate the old time sound of film being advanced.  Janey was standing next to me taking a self-portrait.  I took it away, spoke to her firmly, but couldn't resist seeing what she had taken.  Several of the picture were of her finger firmly pressed against the lens, which is just the reason she can't use the camera, but 3 or 4 were pictures of herself.  That impressed me a little---she knew how to turn on the camera, knew she needed to turn it around to take a picture of herself, and even kind of how to frame the picture.  I might get her her own heavy duty kids camera.  In the meantime, here's a few of the self-portraits...

Christmas night

So Christmas 2012 is almost over.  As is almost always the case on Christmas night, I feel a little let down.  There's such a buildup to Christmas, and it's over so fast.  But it was a very nice one.  We had a great day, and gave the kids more presents than we usually do---we are usually very restrained in that, but I decided this year to put more focus on getting them, especially the boys, things they wanted and needed.  It was fun.  We had a huge amount of special food, a great visit last night with our dear friends for Christmas eve, Janey and I had as much Christmas music all year as can be imagined, and overall, it was a very good Christmas.

The picture is Janey watching the Christmas karaoke VHS we watch every year at our friend's house.  It's kind of a joke with the kids now, as it's very hokey, and has very cheap visuals, and does strange versions of each song, and then once they've done the long, long song, a screen comes up that says "Now everyone sing!" and we sing it all over again.  Lots and lots of laughs, but lots of fun singing together too.  Janey had been napping, and woke up when we were singing, and she was in heaven---it was her dream to wake up to a room of people belting out Christmas music!

Still, with all this being said, there is sadness for me at Christmas.  I don't think it will ever totally go away.  Janey has no real awareness of the holiday traditions.  She doesn't get Santa, she doesn't have any curiousity or interest in her presents, she can't count the days until Christmas, she isn't sad it's over because in most ways she didn't really understand it was here.  She was manic in the night, laughing hysterically for hours, probably because we weren't careful and forgot and let her have lots of chocolate milk, and chocolate and other caffeine is the one solid food connection I've ever found with her---it makes her crazy way out of proportion.  She cried at points today.  We were all exhausted by afternoon, but we couldn't nap, because she had to be watched.  She had pullup issues.  She was, basically, herself.  And she always will be.  She is delightful, sweet, interesting, but she is also autistic and intellectually disabled.  She is never going to get Christmas the way I dream of.  Like so many things, it's my dream, not hers.  It's my sadness, not hers.  But my latest way of thinking is to admit the sadness, and try to move on from it.  It makes me sad that she doesn't understand Christmas.  It makes me very sad.  But Christmas isn't her getting it.  Christmas is, in the words of the Grinch, a little bit more.

A Christmas Present for you!

Here's a present for you, my dear readers!  It's Janey giving you a Christmas Panettone!  For those of you who didn't marry into Italian families, a Panettone is a Christmas type sweet bread, with raisins and glaze.  I am not that huge a fan of them, but they are sort of like fruitcakes or cranberry sauce or candy corns---holiday foods you just have to get whether you like them or not.  Janey is in love with the boxes.  She spent a lot of time yesterday doing very, very rare pretend play with them.  She'd bring a couple boxes (one empty, one still with the bread) over to one of us and hand it to us, then we were supposed to give it back to her and say "Here's a present!  Merry Christmas!", and then she'd take it to someone else.  A pretty basic game, but a great one to see her playing, maybe getting ready to actually open and perhaps even break a smile at some of the presents for her tomorrow.

Merry Christmas to everyone, or Merry other holidays if you don't celebrate Christmas!  I can never be sure how many people actually read this, but it's always amazing and hugely thrilling to me that anyone does.  I appreciate the chance to write here and share my thoughts, and I hope anyone reading this has a wonderful day tomorrow.

The girl in the Hanna Andersson dress

Last night, I went to the holiday concert at Freddy's school.  Freddy wasn't in the concert, but my friend's daughter was, and I love hearing the music.  It was a great night, with lots of different music groups performing.

During one of the sets, I found myself unable to stop looking at a girl playing in the back row.  She had on a dress that is a type I love---a fair isle sweater dress, like from the Hanna Andersson catalog.  I didn't know they made them in her size---she was as tall as a tall adult. It was the kind of dress either a misguided parent would pick out for a girl who wouldn't know to object to it, or a dress that a girl would want to wear that didn't realize how odd it looked on.   Her hair was done in an unusual way, and she had  a look, a look that I think I know.  She was "on the spectrum", I'm fairly sure.  She'd be on the very, very high end of the spectrum, as Freddy's school is an exam school, accepting only pretty strong students, and she was in one of the more selective music groups there.  She was on the far opposite side of the spectrum from Janey, I think.  I could be wrong, but I don't think I was.

It's a dirty little secret, maybe in my own mind only, but I think not, that there is some jealousy and nasty thoughts by those of us with low functioning kids toward high functioning kids.  I shouldn't have it.  I have a child that was once considered on the high functioning level, and I know it's not easy.  But there are times I think "Yeah, you worry your child might have trouble making friends, you work on workplace issues, you talk about how their disability might lower their SAT scores.  Cry me a river.  I'm dealing with smeared diapers, hoping someday my child might be able to do well enough to live in a group home, wishing they could some day read a simple sentence.  My sympathies are limited"  But last night, I got a little perspective, if only due to my own imagining.

I projected about that girl, and a few other kids I saw---a boy in one of the choirs that was not with the program, not in rhythm, another boy who played like a professional but looked hugely awkward and unhappy.  I thought about what life must be like on the very edge of fitting in.  I thought of the lack of sympathy that must exist for kids that can score high on tests, can play instruments amazingly, can be there almost part of it all.

Janey will never fit in.  The older she gets, the less she fits in.  And that, in some small ways, is easier than the alternative.  When we go to a store or other public place, it's immediately obvious she is not typical.  She makes her "Ahhh-ahhh-ahhh" sound, she waves her hands, she sings to herself, she has to have her hand held every second.  People, the vast majority of people, look at us with kindness, or if not that, at least some degree of sympathy.  Many people love Janey.  She doesn't have to struggle socially, as she has no idea whatsoever she doesn't fit in.  She doesn't try to fit in.  She is low functioning enough that unless someone is extremely judgmental or clueless, they don't assume she's just a naughty or loud or ill-disciplined little girl.

But that girl in the Hanna Andersson dress, the girl that might actually be just fine, but the girl I used as a jumping ground for thoughts---she probably lives a daily struggle, unable to quite keep up, being very bright but not able to use that to fit in.  I am going to keep her in mind, and be grateful, in an odd way, for Janey's obvious disabilities.

A link that will make you cry

Here is a link about one of the young children killed in Newtown.

Click here

More than anything else, this put the horrible events of that day straight into my heart, and left me gasping for breath through my tears.  I think about that precious little girl, and I see Janey.  The fact that she was in the class she was making me think the school must have been an inclusion school.  I think of Janey, in a situation like that, unable to follow instructions, unable to hide and be quiet, unable to understand in any way what was happening---not that any child could, but I think of her fear of loud noises, her reactions to others being upset, her dislike of the school routine changing.  I think of all that, and I can barely take it.

We all depend on others.  We depend on everyone who keeps our world safe and operating.  But some of us depend more on others.  Janey does, and that means I do too.  I depend on anyone who is with her when I am not.  Janey needs supervision constantly, just to stay out of danger, literally, to stay alive.  Without someone holding her hand, she might run into traffic, or wander away.  Without someone taking the burners off the stove, or locking cupboards or monitoring hot water, or making sure she doesn't break glass or choke on things she puts in her mouth, we could lose her.  I live with that every day.  I trust the people that care for her at school, and my immediate family.  Other than that, she is with me, all the time.  I imagine the parents of Josephine Gay knew that feeling all too well.  They sent her that morning to a place she'd be safe and cared for.  And evil came that day, and took her life, and the life of other precious children.  In a way, that day reminded us all that we live with an illusion of safety.  Those of us with children like Janey have known that for a while.  I wish no-one else ever had to learn that horrible lesson.

Dispatch from the middle of the night

It's 2:15am, and Janey is happily watching Count With Maisy.  She has worked out her own new sleep schedule.  It consists of going to sleep at the earlier possible opportunity, often 6:30pm.  She then wakes around 1am, ready for a party.  We do what we can to get her to sleep, but often give up and put on a video.  She watches and jumps around and periodically makes demands for food, which we turn down, causing her to scream, but not the lengthy hours long scream, just a momentary scream.  Around 2:30 or 3, she drifts back off, to wake again around 6:30am.  It's some good times, I tells ya.

Part of the fun is the time from 5:30pm, when she gets home from afterschool, and 6:30, her new bedtime she's picked.  That is an hour of non-stop crying and eating.  She comes home in a mood and a half.  Tony gives her dinner right away, and more dinner, and more dinner, and some after dinner treats and some dessert.  She stops screaming long enough to eat and demand more to eat.  Then she demands a snuggle with me, by which point we are ready to do anything to stop the crying.  Then she goes to sleep.

This is actually an improvement over a few weeks ago, when she hadn't figured out yet she wanted to go to sleep that early.  Then, she was screaming from when she got home until 8 or so.  Then she was waking at 3 or so to stay up, demanding and angry.

Needless to say, Tony and I are often exhausted during the day.  I feel for him, at work.  He can't arrange his schedule to nap.  I do---working all I can in the morning and early afternoon, and then collapsing for an hour or two.

I've realized lately that Janey has become more of a fan of routines, whether the routines are pleasant or not. For example, the other day I took out her barrettes.  That is usually followed by brushing her hair, but I got distracted and it didn't that time.  Janey hates her hair brushed, hates it very much.  But after a few minutes went by and I hadn't brushed, she brought me the hairbrush and handed it to me.  It was time to brush, like it or not, she seemed to be saying.  So I did, and she screamed as usual.  Then again I got distracted.  She came over again after a bit, and said "Braid?" I hadn't fixed her hair, braided or ponytaled it or whatever, which she also doesn't like but which is the routine.  And so I think the coming home, crying, sleeping early, waking in the night, has become the routine to follow.  Last night in the car home, she even seemed to be planning it.  She said, in a type of speech I've never heard from her before "I say 'I am ANGRY at you, Daddy!'"  She never actually says that to him, just screams, but I guess she was planning the screaming.

So what do we do?  History has showed we wait it out.  That is all that seems to work.  Christmas vacation is coming soon, and that will change the routines,and hopefully break this latest one.  Until then, we are daytime zombies, evening objects of fury, middle of the night monitors.  Life with Janey.

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.

An emotional day

Yesterday, like most Americans, I heard the news about the shooting in Newtown and responded with pure horror.  I just couldn't even quite wrap my mind around it.  I felt numb, sickened, like throwing up.  I sat there blinded and just not ready to admit what had happened.  For some reason, I felt compelled to decorate the Christmas tree.  As I put on the angel and peace and manger ornaments, I cried, with the news on in the background.  I kept thinking of a line from my favorite Christmas carol---"I Heard the Bells"---the line that says

And in despair I bowed my head
“There is no peace on earth,” I said,
“For hate is strong and mocks the song
Of peace on earth, good will to men.”

It can feel that way, a lot of times.  There is evil in the world.  We can't understand it, we can't quite even grasp it.  But it's there.  However, I truly believe there is more good than evil, much more good than evil.  I see it every day, with the people that care for Janey, that love her.  I see it in Janey herself---an innocence that will never go away.  I see it all over.

Of course, my mind went where I wish it hadn't.  What if it had been Janey at that school?  I saw the pictures of children leaving the school in a line, and thought about how Janey would not understand orders to do that, that the noise of bullets (and how sickening to even have to picture this) would scare her, how she would scream if a class was trying to be silent to avoid being shot (and why, why do we even have to think of such things?)  I thought of how she can be confused and overwhelmed by the smallest things, and I cried.

However, I also thought about how Janey will never really understand evil.  I heard advice on talking to your young children about the shooting, and I felt an odd relief that I didn't need to do that.  Janey knows nothing of what happened, and she won't.  Her autism protects her from some of the worst of life.

The day ended on another note, a very happy one.  William got his first college acceptance letter!  It was to Clark University.  He is applying to 13 other schools, and so hopefully this is the first of more, but the first letter is a huge deal.  We hugged him and cried for happiness.  I remembered the little boy that long ago carried a (wrong) diagnosis of autism, the boy who struggled for years, and who was helped beyond measure by the love of good teachers and (I hope) our love of him, and his own strength.  It felt like another reason to hope---that love and caring can work.  I am so proud of him.

And we go on, trying to understand a crazy world.  We hold our children and wish for them a life free of hate and evil, a life where love triumphs.

Netflix Dilemma

A few days ago, when I told Janey to wait a minute when she wanted me to change the show she was watching on Netflix instant clue, I saw something surprising.  She grabbed the Wii remote and changed the show herself, with ease.  She knew exactly what buttons to push, how to switch shows, how to pause, how to restart a show, even fancy stuff I don't know how to do, like how to fast forward.  I watched her in amazement.  She didn't know I was watching.  I stepped away and she watched her desired show.

So---the next time she asked me to switch shows, I handed her the remote and said "You know how to do it.  You do it yourself."  She looked surprised, but did do it.  Then a few minutes later, she asked again, and I again said "Do it yourself."  She started screaming.  She ran at me as if to hit me, was warned off that, and then got on the couch and cried hysterically for quite a while.  I held out.  I said "I know you know how to work the remote yourself.  If you want a different show, you do it"  She just didn't watch anything more that morning.

Today, again, she asked me to put on a show, and again I said she could do it herself.  She got extremely upset, and wound up in time out for hitting at me.  And it started me thinking.  How important is it that she do it herself?  I know now she knows how to.  Once she learns a skill, she doesn't forget it, although she often won't repeat what she learns for love or money.  So why is it important to me that she do it herself?  What is the lesson I'm trying to teach?  Am I trying to teach her how to use technology, or I am trying to teach her to communicate?  When I put on the show for her, we interact a lot.  I ask her which show she wants, I ask her if I'm picking the right show, she sometimes describes the show a little to help me get the right now (the famous "head in a box" picture of the Kipper she wanted comes to mind)---we talk.

I automatically went for trying to have her do things herself, even though in a lot of ways, that reduced the time we would spend working on the skill I most want for her, communication.  Sure, it's very good she can do it herself.  But she's shown she can.  I don't need her to do that over and over to prove it to me.  Sure, it saves me time and frustration and boredom, and I am sure if I just put her off for a few minutes sometimes, she's do it herself again, just to get the show she wants.  But I need to think twice before I insist on her doing something without my interaction.  It's the interaction that is the skill I most want to teach her.  More than self-reliance.

This autism parenting stuff is complicated.

Dream Alert!

The dream alert is for a certain friend of mine, who will remain nameless, who often reads my blog and doesn't like to hear dreams.  Okay, you know who, stop reading right now!  And for anyone else who might share her odd dislike of hearing other people's dreams, stop now too!  But blogs are nothing if not self-indulgent, so I'll go on and tell anyone who is still listening about the dream I had last night.

In the dream, Janey was attending some kind of early intervention.  She was younger than she is now, but not under 3, which is the age for real life EI.  The program was held on a sledding hill.  There was a place for parents in a little lodge above the hill, with lots of windows so you could look out and see your kids.  Some of the parents were on the slope with the kids and some were in the lodge room.  I got Janey suited up for sledding (in some high top sneakers, for some reason) and held her hand, ready to take her sledding with the parents that were with their kids.  Then one of the EI workers stopped me and said in a fake cheerful voice "I'll take Janey.  You just relax and sit there and talk with the mothers.  She'll do fine, won't she, Janey?" I knew she was saying this because she thought I was overprotective and that Janey would do better without me.  I didn't agree, but being the type that doesn't like to argue, I let her take Janey and went up to the lodge.  We all got talking and I was feeling pretty relaxed, when all of a sudden, Janey walks into the lodge.  She is holding a hack saw.  I grab the saw.  I'm filled with fury.  I ask the other mothers to watch Janey and run down to talk to the EI workers.  I scream at them "You thought I was so overprotective, but you don't understand Janey!   You can't take your eyes off her for a SECOND!  You weren't watching her! No-one saw she had a saw, no-one noticed she had left the hill and come up to the lodge, no-one was WATCHING HER!"  I was hysterical.  They talked to me in "calm this crazy lady down" voices, and I demanded to talk to the woman in charge.  She was really something---acting like I was being totally unreasonable and crazy and silly.  It never came up to ask why a hack saw was lying around where little kids were playing---you know how dreams are.  I wound up going back up, getting Janey, and telling all the other mothers how horrible the program was, and storming out.  The dream was dramatic enough that I was screaming out loud in my sleep---sleep talking being something I do a lot of.  Tony knew to ask me what upsetting dream I had when I woke up.

Dreams often don't mean much, but I'm trying anyway to figure this one out.  It isn't much like my real life----Janey is watched very well at school, and I have never once seen a hack saw lying around there.  And I don't scream like that at people.  I probably wouldn't even do that in the dream situation, although I'd be justified doing so, I think.  If this dream has a meaning, it might a reflection of my fears for the future, my fear of Janey some day being in a situation where she isn't understood and where what I know about her as a parent isn't acknowledged.  It might have been triggered by my reading of the "Far From the Tree" book, and hearing about how it can be hard for parents when their kids become adults, and where any kind of letting go and having a life outside of the child is fraught with danger for the child.  Maybe I was preparing myself for fights I might some day have to fight.  Who knows?  I woke up upset and shaky.  And glad that dreams, for now, are not reality.

Mythologizing Recovery

I've been continuing to read "Far From The Tree".  It's a very long book!  I've finished the chapter on autism, and I'm going to write more about it when I finish the whole book, but in that chapter, there was a quote that struck me very hard.  It was written by Cammie McGovern, the mother of an autistic child, in a New York Times op-ed piece (you can read the whole piece here) and it said "In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."  That says a mouthful.  She says in the piece something I've thought---that you don't really meet these recovered kids outside of the books.  I am sure they exist, in a way.  In fact, I have one in my own family, in my son, in a way.  But I don't think he was ever autistic to start with, and if he was, I didn't "recover" him.  He recovered himself, or his brain recovered itself.

Do I feel like a failure because it doesn't appear Janey is going to "recover"?  Well, strangely, although I am prone to feeling guilty about everything (including the ducks going barefoot, to use a phrase I heard growing up), I don't feel guilty about that.  It is not my goal to have Janey recover, because I don't think it's possible.  And I am not going to use her whole childhood to try to do something that I don't feel in my heart is possible or is in her best interests.

I was thinking of an analogy.  Say you had a kid, a "typical" kid.  A great kid, but with a huge amount of trouble with math.  This kid just doesn't get math.  He is good at a lot of other things---let's say he writes poetry, he plays chess, he is a fast runner---he's a cool kid.  But he is no good at all at math.  And that just is not okay, with his family or school.  They decide to "recover" him, to fix his math problem.  And because anything worth doing is worth doing all out, they go all out.  They start a 40 hour a week math tutoring program, for starts.  They have him get rewards for doing math.  Before he can play chess or write his poetry or run, he has to do a math problem.  They work math into every part of life.  Now, this kid is never going to be a math whiz.  Not even the most optimistic people think that.  But the goal is that he be indistinguishable from any other kid with his math abilities.

One of two things can happen.  He can recover to the point that he functions as well as anyone at math.  It took him about 20 times the effort, and he doesn't like math, and he is not going to have a career in math, but he is okay at it.  Meanwhile, he's lost out on time he could have spent doing things he's really good at.  He's been hugely frustrated over and over.  He basically didn't have a childhood for years, recovering that math.  The other result---it doesn't work at all.  He doesn't learn math.  Maybe he can do a few math facts here and there, unpredictably.  But he will never, ever be in a regular math class.  The time teaching him basically has been wasted.

Now let's look at another way to handle his math problem.  We could say "well, math is not his thing.  It's quite helpful in life to know a little math, so we will work with him on that.  He will have math lessons now and then, but we are certainly not going to let it take up time he could be living his childhood.  We are going to emphasize what he's good at.  We will help him with math, but we realize that he won't be going to MIT.  He won't be taking calculus.  He might spend his whole life with a little trouble counting change"

Of course, the skills autism takes away are more life-changing than math, but the basic theme is the same.  I accept that Janey is autistic.  There are things she'll most likely never be good at.  But there are things she's very good at, and besides that all, she's a kid.  I could go all out "recovering" her, and maybe, maybe, she could get closer to "normal", although with her intellectual disability, that's not likely.  But she'd lose out on a lot.  Or it might not work at all, and I would feel like a failure.  Some people might say it was worth it, that I should have done 40 hours a week of ABA, a special diet, intensive floortime, high dose vitamins, a private school.  I say no.  I say I'll keep doing what I'm doing, and what her wonderful team of teachers and therapists are doing.  I'll work on the autism, but I'll leave time for music and running around outside and snuggling and laughing and a childhood.

One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.

It's not a race

If you have spent much time around little kids around age 4 or 5, you are probably familiar with the stage they go through where everything is a race.  You give a couple of them a glass of milk, and you are sure to hear someone say "I won!  I drank it quicker!"  And you are sure to hear yourself saying that classic line "It's not a race!"

That line was in my mind a lot after our meeting with the developmental pediatrician.  The more I think about the things she said, the less I agree with her.  She first tells me how poorly Janey did on the intelligence tests, which was not the problem.  I expected that.  But then her advice, which is all centered around school---more specifically, feeling that Janey is not making the maximum possible "progress" in her current "placement".  Janey is not learning as quickly or as much as she possibly could.  She grudgingly heard what I said---that I was extremely happy with Janey's school, that I would not consider moving her, that I loved the people who worked with Janey---and then went back to saying basically that she was not getting "all she needed"  Janey should have a one-on-one aide, she felt.  She should be in a separate classroom.  She should be being taught intensely.

And I have been thinking ever since then---WHY?  It's not a race.  We know Janey doesn't learn in a typical way.  She doesn't learn in steady lines.  She learns in an unusual way, and she learns slowly.  Janey is not going to college.  She is not going to get a high school diploma.  She is not going to hold a job.  I am fairly at peace with those facts.  And so why in the world would be it even something I'd consider to move her from a school where she is loved, cared for, taught by people who understand her and are interested in her, where she is surrounded by kids who are kind and compassionate and have grown up with Janey, where people know not just Janey but our whole family?  Why?  So she could show a little steeper rise on some chart of progress?

Janey's IEP meeting was a few days ago, and I left it feeling as I usually do after such meetings---extremely happy.  Teary-eyed at being in a room full of people who love Janey, who get her, who are fascinated by her, who see her clearly---not as a statistic, but as a little girl---an unusual little girl, a little girl with behaviors that can sometimes be very tough to deal with but other times can be incredibly touching.  And people who are giving Janey exactly what she needs---not just in terms of love but also in terms of therapy---speech, OT, PT, music therapy and ABA (which they increased, without me asking).  

I've started a book called "Far From The Tree" by Andrew Solomon.  It's a huge book, and I think I'll be writing about it a lot more.  It's about the relationship between parents and children when the children are very different than the parents, by means of having a disability or other difference.  I love it so far.  One early fact related struck me as relevant to my recent thoughts.  It spoke of how fewer than one in ten professionals (which I am taking to mean psychiatrists, pediatricians, etc, and not teachers or therapists, although they are certainly professional also) found meaning in the struggle to raise children with special needs.  Most of them see it as a tragedy---see the lives as a tragedy.  If that is the case, I can see why they would think that even small improvements in the "outcome" would be worth making drastic changes in the child's life.  I'm sure this is not always the case, but I can see that it sometimes is.  

One gift that having Janey gives us is the gift of time, of not having to rush.  With the boys, there are grades to be completed, tests to take for college, deadlines, must learn now subjects.  With Janey, there is her whole life ahead to learn.  She doesn't need to hurry.  She isn't going anyplace soon.  She will be here, with Tony and me, for a long time.  She can take her time.  She can enjoy her life.  It's not a race.

A night of classic screaming

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

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

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

Successful dinner out---knock on wood

We just got back from eating out with Janey, at an actual sit-down restaurant.  I can't think of the last time we did that successfully, and I don't know how I got up the courage to try.  I was feeling hemmed in, and also drawn in by the constant commercials you see for chain restaurants---meals that look incredibly good and reasonably priced.  I know they often aren't as good once you actually get them in front of you, but I'm a dreamer.  So we drove out into the night (all but Freddy, who begged off due to homework) and started thinking about where we should try.  We drove into the parking lot of a Chile's, but Janey took an instant dislike to the place.  She answered very clearly when we asked if she wanted to eat there---"NO!"  We tossed around a few more ideas, and then drove to a Uno's (used to be Pizzeria Uno's).  Janey seemed to like the looks of that place better, and we went in, ready to leave as soon as it became necessary.  And it did NOT become necessary!

Some of the keys---the crayons they gave Janey---she didn't actually draw with them, but liked holding them.  Getting her chocolate milk stat (it didn't arrive quite as quickly as she'd have liked, which we did hear about from her).  Taking her for a walk the one time she asked.  Getting the right table, a booth in a quiet area of the restaurant.  Ordering her a kids' steak and fries.  What didn't help as much as you'd think---having the iPad there.  Janey seemed to feel it was out of place in a restaurant environment, and wouldn't play with it at all.

And then there's luck, or karma, or whatever.  At one point, Janey tossed her crayons into the next booth, hard.  Tony got up to get them and said he was sorry, that she had special needs.  One of the women there laughed and said "Don't give it another thought.  Our family is full of them!"  When they got up to leave, they stopped to say hi, and that is when I realized one of the three middle-aged women, who I think were sisters, had Down Syndrome.  That woman especially was sweet with Janey and made a point to try to connect with her.  Then, as we were leaving, I somehow felt compelled to tell the waitress we hadn't tried a dinner out at a sitdown place with Janey for probably four years, and that she was autistic, so we were very happy how well it went.  The waitress said casually "Oh, yeah.  My sister is autistic too"  I left feeling less alone that I often do.  There are other people out there living a life similar to ours, and the life we will someday live, with adult children or siblings with special needs.  There are lots of us.  It doesn't always feel that way, but there are.

We gave Janey a big high-five after the meal, and let out our breath.  It won't always work that well to attempt to live the ordinary life, but it's good to know we sometimes still can.

Ways I'm not smart, ways Janey is

Janey's recent testing has led me to think a good deal about what "smart" means.  You can take smart as something a test can measure.  If you do that, well, I would test smart.  I am good at the skill of taking the tests that have been chosen by a lot of educators to define what they have chosen to define as smart.  However, over the years, I've had many occasions to realize that doing well on those tests means---doing well on those tests.  Not a lot else.  If you look at my life in terms of financial success, or major academic success, or artistic success, or a lot of other measures of success, I would not test very high at all.  The tests don't predict much, except that you will probably do well on future tests of the same kind.  There are a lot of ways I'm not smart at all.

I learned quite a few of these ways during high school.  I'm hopeless at foreign languages.  Everyone around me was learning vocabulary right and left, and I just couldn't.  This is also a problem with me for learning names.  I don't have a good memory at all for verbal words.  Janey is extremely good at this, obviously.  She seems to store every word she's ever heard someplace in her brain, and when she wants to, she can recite them back.  I also could not for the life of me remember the names of various parts of things, like in biology.  I remember studying for a test on the parts of a fetal pig.  My friends seemed to be to be able to glance at the pig and know all the parts.  I truly worked hard at trying to learn them, but failed miserably.  I also learned, well before high school, that I am about the worst athlete on earth.  The horrible memory of a relay race in gym that involved my team not being able to move along until I got a basket still burns.  The WHOLE TIME OF THE CLASS was me trying to get the basket, with about 20 girls around me snickering.  When I see Janey run or climb, I am always stunned by her natural grace.  It goes without saying I can't dance or do aerobics type stuff, while Janey seems able to learn a dance routine she sees after one view.

I also don't have the gift of being able to push myself to work very hard.  My school grades were good, but they could have been much better.  I see how William works at his homework, and I know I never put in a tenth of that effort.  When Janey wants to do something, she doesn't give up.  I'm a giver-upper.

I remember very plainly the moment I realized I was just not musical.  I had been playing the trumpet for 7 years at that point.  I was the worst trumpeter in the band.  Most of the time, I was just faking it, not playing at all.  It struck me like a ton of bricks "I am just not good at this.  No matter what, I'm not musical"  It was actually a relief.  I believe in that kind of realism in life.  Not everyone is good at everything.  Janey doesn't play instruments, but she can instinctively sing in tune.  She appreciates good music, and knows the difference between that and bad music.  She has the musical gift.  I don't.

I am also the messiest person on earth.  I've always been that way, and I probably always will be.  It's an area where no matter how hard I try, and off and on I HAVE tried, I just can't keep things neat.  This was the case with my desk in elementary school, this was the case with my locker in high school and this is the case with my house.  I don't see the mess well.  I don't know how to keep things organized.

There are things I'm good at.   I'm one of the fastest readers you are likely to meet.  People tell me I'm a pretty fair writer.  I'm not bad at trivia.  But overall, the ability to score as a "gifted" child on IQ tests has done very, very little for me in life.  And I need to keep that in mind.  I believe in reality.  I'm not going to dismiss the fact that Janey will most likely not learn to read well, not graduate from high school, not hold a job.  But none of that means she doesn't have areas where she is very, very smart, smarter than I'll ever be.

Intellectual Disability...Finding out what I already knew

Tony and I had a meeting yesterday with the developmental pediatrician that tested Janey a few weeks ago.  She, like many people before, hedged on giving us anything like an IQ score, but she told us that on the tests she did (which were actually for kids younger than Janey, as tests for her age would probably be totally unusable)  Janey tested as low as she could, beneath the 1st percentile.  She said at this point Janey could be diagnosed as having, in addition to autism, an "intellectual disability".  Which means, to use the older phrase, retardation.  She said that can't be diagnosed before age 7, which is part of why it wasn't diagnosed before.

So...well.  I already knew that, of course.  But hearing it still wasn't a great deal of fun.  I know Janey has skills the test can't test, but overall, I know it's correct.  The doctor said Janey can't be expected to ever read for meaning, to do much of anything ever academic, and that spending much time on academics is a bit of a waste of time for her.  She thinks Janey needs a different school placement.  I don't agree there, for now.  Janey will stay where she is at least until after 5th grade.  But I do appreciate getting a longer term view of what can be expected.  Which, frankly, is not a lot of progress.

I don't mean to sound like I'm giving up on Janey.  I know what the movie or book or dramatic response should be.  I should say "I'll prove you wrong!" and go on to work tirelessly with Janey every second, right up until the day she graduates from medical school.  But that's fantasyland.  I will never give up on Janey, but I live in realityland.  I can see it's extremely hard for Janey to learn.  I am devoted to her---to giving her the best life I possibly can within her limitations.  I don't think it serves her to try to make her be what she isn't.  I want to work to her strengths, and she does have strengths.

For some reason, all this has been making me think about religion, and how I wish sometimes I could be more of a believer.  This is partly because when I read other blogs, it seems like it's such a help to many parents of autistic kids.  I keep thinking about the phrases "God only gives you what you can handle" and "God has a plan"  I know those aren't Bible quotes, but they are said a lot by people that are believers.  I feel like whoever doles out challenges, God or fate or whatever, has given me a lot more than I can handle, or maybe I should say handle well.  You handle what you get, because what choice do you have?  But no-one gets my best.  I can't be the parent I want to be to any of my three kids.  I can't be the wife I want to be, or the friend I want to be, or the community member I want to be.  And if God has a plan, in some ways that makes me less likely to be a believer.  It seems like it would be a mean kind of God who would make plans that involve making a little girl autistic and intellectually disabled.  I know it's supposed to be part of a bigger picture thing.  But I don't think that's the God I would choose to worship.  I hope I am not insulting anyone saying this.  I have the hugest respect for people that believe.  I truly wish I did.  I can't make myself.  I wish I could.  All I can think of to keep a possibility of faith alive is that maybe it is part of God's plan that I don't believe right now.  And it's a little convoluted!

So, we go on.  Nothing has changed.  I heard what I already knew.  Janey is who she is.  I love her, as Mr. Rogers taught me to say, just the way she is.

Motivated to get it wrong

This morning, I worked with Janey on an on-line reading program her school uses and that you can use at home, Lexia.  Janey was happy to use it.  She was familiar with it from school, and was able to use the mouse pretty well and do the activities it asked her to.  At her level, it's mainly picking a letter, hearing how it sounds and what kind of words it is used it, doing a little game like a puzzle or a find-a-letter picture and then listening to two words and picking the one that starts with the letter you are working on.  Janey did well until that last part, and I noticed something odd about how she did on that part.  She got the answer wrong EVERY time.  There were only 2 letters to pick from, and the program was smart and moved them around after you got it wrong once, and pure chance would say she'd sometimes get it right, but she didn't.  And I soon realized why.  If you got it wrong twice, the voice said "Let me help you think about this" and then picked the answer for her.  Janey echoed "Let me help you think about this" in the exact tone of the computer voice, and laughed like crazy.  She had quickly figured out how to get what motivated her, by not getting the answer right.

That made me think how often something like that happens with Janey.  She isn't motivated to get things "right", whatever our notion of right is.  She isn't motivated to make other people happy.  She's motivated by herself---by what makes her happy.  So she'll spend long periods of time doing what look to me to be boring apps on the iPad if they make a sound she likes as a reward.  She'll work to get at foods we don't want her to have right then, if she can get a bite or two before we start all the yelling and showing her what a mess she made.  She doesn't care we are upset---she got what she wanted.

It explains a lot what makes learning hard for Janey.  It might not even be so much that learning is hard---it's that motivating her to learn is hard.  She can do quite complicated things when she wants to.  She's pretty much figured out Netflix instant viewing.  She knows if she wants strawberry milk, she needs to bring me milk, the strawberry powder, a glass and a spoon.  She can somehow "read" the VHS tapes, even ones without pictures, if it results in the right one being put on.  She knows the words to every Christmas song out there, and if you'll sing with her and leave out words, she'll show that.  But things she isn't motivated to do?  No way.  It's why giving her little rewards like M&Ms can bring out knowledge we had no idea on earth she knew, like the time she spelled her last name or said which brother was bigger.

And that's the challenge of autism and learning, right there.  How do you get your child to WANT to learn the things they need to learn?  I usually have no idea.

Another Day, Another Book

My mini-marathon of reading autism related books continues.  Yesterday I read "Next Stop" by Glen Finland.  Her son David is an adult with autism (and other issues like Tourette's), and she writes about learning to let go of him---teaching him to ride the Washington DC Metro system, having him go for two years to a training program far from home, helping him get jobs and watching him develop his own life.  I liked the writing.  It's a little old-fashioned in a way, kind of detached.  It reminded me of books like "Please Don't Eat the Daisies"

A couple major thoughts came to mind while reading this.  One is the sub-theme of David's brothers.  Although the author respects their privacy in the writing, I get the feeling that growing up with David was not at all easy for them, and that there still is lingering problems due to this.  The brothers don't seem to show up for major events in David's life much, and although they love him, I think they were scarred a bit by all the attention he required growing up.  They were close in age to David, and I hope the fact my sons are not close in age to Janey helps with that issue some.  But I know there are times they miss out on a lot due to Janey.  I like to tell myself they are learning to be independent early on, and that I am there when they really need me, but I wonder.  I don't know if there is any way to totally keep a sibling's autism from taking away something from a childhood, but I want to do the best I can in this way.

The other thought that kept coming back to me is how in some ways it's probably easier to raise a lower functioning child with autism than one like David.  In a lot of ways, of course, it's not.  But I don't think I'll ever have to deal with worrying about where Janey is when she's off on her own.  I can't really picture a day she'd ever go anywhere on her own, even to the store we can see from the house.  She very rare is anyplace out in public without her hand firmly held by one of us.  I don't think I'll ever have to worry about how she'd doing at her independent job, or how life is treating her when she is away at a training program, or if people on the street are scamming her.  I don't think it will be hard for us to get a power of attorney for her when she gets to be that age.  It's pretty clearcut with her.  She's not going to "pass" for normal any time soon.  I can't even fool myself into thinking she does for a second when we are out in public any more.  It's very clear to anyone that sees her that she is "special" in some way.  And although of course I'd give pretty much anything for that not to be the case, it does make some things easier.

The book is one that needs to be read by those making the policies that will affect the Davids and the Janeys in the future.  There are going to be a heck of a lot of them becoming adults in the next 10 or 15 years, and I don't think anyone out there is prepared.  It's going to have a HUGE impact on society.  Even if we decide every family just has to take care of their own, and as a society take no responsibility, that results in a lot of families with reduced earning power, and therefore reducing spending.  That will affect the economy, if you want to look at things from the most economic way possible.  It might be more cost-effective, in the long run, to provide help for these families.

I'm probably going to take a break from reading about autism for a little while.  I'm a little burnt out of the topic.  But it's good for me to read the books now and then.  I need the perspectives.  It's a big spectrum out there, and we all have something to teach each other.

What Made Janey Autistic #3 in a series

From as early back as I can remember, for some reason, I've been fascinated with genetics.  I've read everything I can find about it.  My sister shares this interest, and we actually used to pretend that our dolls suffered from a rare genetic disease we called Ingalls' Syndrome (I think we were into Laura Ingalls Wilder at the time).  It has symptoms that made dolls, well, doll-like---floppy and not too good at walking on their own.  My sister Carrie came close to going into genetic counselling, and I've kept up my interest through reading over the years.

Genetics, however, when it comes in the form of possibly genetic-linked traits, is not quite as thrilling when it happens to  your family.  But it's certainly a possibility for a cause for Janey's autism.  And a delicate subject.  I'm not going to list family members on both sides with oddities that might be somewhat autism-related, but suffice to say they exist, for sure.  Nobody has full blown autism, but both sides of the family tree are peppered with quirky people.  It's certainly possible that some genes came together that were enough to give Janey autism, or more likely put her in a vulnerable state where getting autism was more likely.

I've always wondered if it's possible Janey has some genetic disease that hasn't been identified, maybe a mild version of one or a mosaic version.  She has a few physical soft markers, little oddities.  One is her toes---the 2nd and 3rd toe overlap, and they are slightly conjoined---not connected, but they seem to share a common root.  She has angel bite type birthmarks when she was a baby that still show up when she cries hard.  A pediatrician at the clinic that diagnosed her said her heart was in an odd position--she even said she thought it might be on the wrong side, but my pediatrician said at most it's more in the middle of the chest than most people's hearts.  She had the late walking, but that's fairly common in autism.  And there was the one MRI way back that showed she had some white matter in her brain where it was supposed to be gray matter, some little dots of it I guess.  But a further MRI didn't show that.  So little things, which of course I've Googled to see if they fit into any pattern, and haven't found one, as of yet.

I do believe that genetics are a huge force in making us what we are, more than most people think or like to think.  I'm fairly sure that genetics have something to do with Janey's autism.  It's another component, along with the first two parts in this series.  When gene analysis gets even better, I might see if a geneticist can have a look at her genes, but at this point, the genetics of autism isn't at an advanced enough point to make that worth it, I don't think.  Until then, I'll call genetics a strong maybe as a cause.

Some reading

I read a couple books lately about autism.  I come and go on reading autism-related things.  Sometimes I'm not in the mood---I need the mental break that reading on completely unconnected subjects brings---but sometimes, it's good to read the perspectives of others that are dealing with the whole bit.

The first book I read about "If I Could Tell You" by Hannah Brown.  It was actually a novel, about 4 families with autistic kids.  It was set in NYC, in the moneyed high-level career world, which probably biased me against it.  I can never understand why the publishing world seems to publish SO many books set in that world, a world most of us just can't relate to one single bit.  I guess it might be because that's where the publishing houses are, and when the readers at them read book proposals, they think "Wow, that's so much like my life!"  Pretty narrow way to look at things, but I digress.  Aside from being annoyed that the people in the book barely blinked at spending sums of money that would keep my whole family supported for years on whatever autism therapy they chose, it wasn't a bad book.  The parents all picked different ways to deal with the autism, and reading the book would provide a good introduction to these ways, like ABA, Floortime, medical procedures (a bit quackish ones), more mainstream autism schools and so on.  The book seem to feel none of these therapies work well, at least in the eyes of the characters.  The only one that seemed to show promise was called the Sapir Method, and is mostly only available in Israel.  I didn't get a very clear view of what it consisted of from this book.  The book also featured career drama, affairs, family drama---all of which to me seemed a little pasted in to make it a book not JUST about autism.  But I'd say it might be worth a read.

The other book was "Seeing Ezra" by Kerry Cohen.  It was a more conventional autism memoir by a mother.  I liked it mostly.  The author gradually came to a conclusion I think I've come to also---nothing really changes autism.  It's part of the child, and the best idea is to accept it, love the child with it, and work gradually and gently to make their lives better and easier.  I admire Cohen for realizing this pretty early on, and taking Ezra fairly quickly out of situations and therapies that weren't working.  Ezra is higher functioning than Janey, but with some challenges she doesn't have, like eating only a very few foods.  It made me feel lucky Janey is an omnivore---something pretty unusual for kids with autism.  I felt flashes of annoyance at the money issues in this book too.  The family always has a nanny or au pair.  They ask parents for monetary help and gets all kinds of money for a new school.  I realized, though, when thinking about the two books, that the money didn't really make a difference.  In some ways, the fact we don't have any money to try anything much with Janey has prevented us from trying things that most likely would not have done much anyway.  But I wonder if people publishing these books realize how much it can irk us regular folk out there that they always have a nanny or babysitter or someone else being paid to watch their kids while they live lives outside autism now and then, and many of us certainly don't.

People often tell me I should write a book.  I've thought about it, outlined one, and maybe some day I will.  But I struggle with a few things to do with that.  There are many autism memoirs out there.  I would need to feel I could write one with something new to say.  I also think about the boys' privacy.  Any book would have to include them a lot, to tell an accurate story, and they deserve to not be written about, to have their lives out there for anyone to read.  They don't even like to be tagged in Facebook pictures.  But maybe, in the future, I'll figure all that out.  Until then, I'm glad I have this outlet for my writing.

Early on Thanksgiving Morn

I had intended to write a post about all I am thankful for today.  That's the traditional Thanksgiving thing to write, and I am certainly thankful for much---wonderful people in my life, great schools, an amazing family, music, books...many things.  But somehow that post was not getting written today.  Last night was tough, not just with Janey but with all three kids---lots of emotions, parent vs. child expectations for family togetherness, the holiday stress, medical issues---it was a hard night.  Not that I'm not still thankful as all get-out, but I thought I'd write a more specific post---about Janey, about being thankful for her.  And I am---with all the challenges she brings, I am hugely thankful for her.

Where to begin?  Maybe when I found myself a bit surprisingly pregnant in my late 30s.  Not that we don't have an idea how people get pregnant.  Not that we didn't realize you don't have to be actively "trying" to get pregnant, just a little not careful.  I won't get TMI (for you older folks, that's Too Much Information) on you here, but finding out on the day after Christmas 2003 that we were expecting child #3 was a big surprise, and a happy one.

And then of course, leaving out all the extremely tough parts of the pregnancy, there was that amazing moment when I got the call about the amnio, the news that we were going to "get our girl", as lots of people put it.  That was one of the peak moments of my life.  I loved having two boys first, but we were ready for a girl.

Leaving out again the hard parts of her birth, the moment I first laid eyes on my Jane was another flashbulb memory, an wonderful one.  She was unexpectably very blond, very light and so, so beautiful!

As Janey grew from beautiful baby to adorable toddler to amazing little preschooler, we had three years without autism.  There might have been signs, but they were subtle enough that early intervention (who saw her because she didn't walk until she was 2), her pediatrician and many other eyes didn't catch it, even though we knew she was at high risk.  I have buried a lot of memories of these early years, and I wish I hadn't.  She was a quirky but fascinating little tiny girl, one who delighted us greatly.

And then the regression.  And the hard years started, the years that continue on.  But still---so much to be thankful for.  Through all Janey has been through, she has retained some amazing traits.  She is physically very graceful---the athlete Tony didn't really get with his boys.  She laughs like no-one else.  She surprises people constantly with her affection, which cannot be bought or bargained for, but is given like an award to those who have earned it.  She adds to our family in so many ways.

I am grateful in a special way for Janey's love of music.  We listen together to songs every day in the car, on the computer, everywhere music lives.  She knows what she likes, and when she loves a song, and we look at each other in amazement at the glory of her favorites, it's the purest, most heart-felt connection I've ever felt with anyone.  It bypasses the autism in her and goes right to the part of her brain that seems to have been never touched by the autism storm.  We connect as equals, or as her my superior, in our love of the music that touches us.

I am thankful I have been given Janey.  She was not the result of a trip to Paris rerouted to Holland.  She is a destination of her own.  For all the challenges, the tough days, the tears, and I will never pretend that there aren't many, I am still thankful beyond my ability to write for Janey, the real Janey, the endlessly frustrating, endlessly challenging and endlessly amazing daughter of mine.

Boxing it all up

The last few days have felt pretty tough.  Janey has been in an odd mood.  She is still talking much better than usual, but she's very, very emotional and volatile.  She is reminding me of a teenager, and I was remembering that both boys went through a stage a little like that when they were 8, and a friend had told me all her 4 kids did.  We had a theory it's when the teenage hormones start to kick in, to get the whole process started, and that makes sense.  She will be watching TV, happy as a clam, and suddenly something hits her and she is screaming or angry, and running over to me with her favorite phrase "Snuggle on Mama's bed!".  She has also been getting a little hitty.  Just flinging her arms around and a little more often than chance would dictate flinging them onto me.  I could deal with all this, but I also got some test results from the doctor indicating I better take better care of myself.  Nothing terrible, but warnings.  Among other things, my thyroid apparently is once again on strike and I probably need a higher dose of replacement.  That in the best of times can leave me drained and exhausted.

So yesterday it felt like too much.  I tried hard to absorb it all, because what else can I do?  But when driving to pick up Janey, my eyes did not get the message the rest of my mind was shouting at them, and I started crying.  Which is not good to do while driving in the city in the dark.  It was funny---I didn't feel that emotional, but my eyes did.

Now it's the middle of the night, and I woke from a dream or thought or something.  I was picturing the new challenges coming in, and me packing them up in boxes---reasoning them out, figuring out how to deal with them somehow, and putting them in boxes to store.  There was a lot to box, and some of it came in odd sizes or required special care like lots of bubble wrap (you can tell I box a lot of books and other things to mail).  Some of the thoughts were pushing at the edges of the boxes, not wanting to stay under control, but I didn't have a choice.  I had to get everything put away.

That is how it feels a lot of times.  I don't have the luxury of letting all the thoughts and challenges sit around.  If I did that, there would not be room to move around, to do the daily things that need doing, to keep Janey happy, to drive her and get her to sleep and fend off her flailing arms and interpret the world for her.

And sometimes I worry I'm running out of boxes.

Janey's Twelve Word Sentence

One of the rarer Janey modes is the extremely talkative mode.  It's as rare as the proverbial blue moon, but we had one this morning.  The morning had started out rough, with a lot of screaming and tantrums, and Tony and I decided we better get Janey out of the house fast.  She usually does much better on the go on weekends, rather than sitting around the dull old house.  It doesn't really matter where we go, just THAT we go.  So we took her to the big Goodwill downtown, and then we were talking about where we were going to get a bite to eat, and Janey came up with this sentence "You are thinking you are talking about getting your bear chicken nuggets"  12 words!  I often call Janey "my bear", so that is where that part comes from, and our talk was along the lines of "what are you thinking we should get Janey?  That was only one of about 10 great sentences out of her today, all of which we about what we were actually talking about.  While I was in the store, Tony and Janey were walking around and saw a squirrel up a tree, and Tony asked Janey to say hi to the squirrel (we are always practicing those greetings!), and instead she said "Hey, squirrel, what are you doing up there?"

It's hard to express how rare talking like this is from Janey.  It's like if someone usually was at about the level of subtraction in doing math, and suddenly started doing algebra, and then went back to subtraction, and then had days where counting to 10 was a challenge.  It's the part of Janey autism that is amazing and at the same time, heartbreaking.  How often are sentences like that in her head, and can't find their way out?  How often does she understand what we are saying, and have something to add, but just can't?  Is there some strategy, some magic method I don't know, that would unlock Janey?  I just don't know.

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.

What Made Janey Autistic #2 in a series

I want to say before I start this entry that I am not a doctor, obviously, and I am using medical ideas to write this that I have remembered along the way.  Please don't take them for hard facts, as they could be wrong!  What I'm trying to do here is give my thoughts based on what I've read and heard, which is I think what we all try to do with figuring out this autism bit!

That said, my theory #2 of what caused Janey's autism is that autism is an autoimmune disease, and our family is for some reason heavily prone to autoimmune diseases.  As I understand it, an autoimmune disease is one in which the body's own defense mechanisms get overactive and attack the body they are supposed to be protecting.  The idea is that something triggers the body to start attacking the brain at some point, causing autism.  It could be some little sickness we can't even remember the child having, or some other trigger that is impossible to figure out.

Our family tree is full of examples of diseases that are at least in part autoimmune.  I have a pretty much non-functioning thyroid and have to take large doses of thyroid replacement every day.  I also have asthma.  When I was pregnant with 2 of my 3 kids, I had pre-eclampsia, which is thought to be another AID (auto-immune disorder, so I don't have to keep writing it!)  Tony is an insulin-dependent diabetic, a type that is kind of a cross between type one and type 2.  Freddy has asthma like me.  My mother has Raynaud's Disease.  My sister, my mother, Freddy and myself all have pretty severe seasonal allergies.  My sister had thyroid cancer.  My uncle and grandmother had or have disfunctional thyroids, like myself.  Almost everyone in Tony's family has the same kind of diabetes he does---his brothers, his father and many aunts and uncles and cousins.  The list could go on and on.  We are poster kids for AID.

One, someplace, I read that another sign of being prone to AID is when the MMR vaccine doesn't take as a child.  Both my sister Carrie and I were tested when we were at child-bearing ages, and were found to be not immune to rubella, and had to have another shot.  Our immune system fought off even the vaccine dose as kids, and didn't therefore get the immunity.

The AID-autism connection just makes sense to me.  You aren't born with AID.  Something triggers them.  That would explain why kids develop autism as they get exposed to more things in the environment.  Some people are pre-disposed to AID---not every kid is going to be triggered to be autistic.

A weird thing that also seems like a connection to me is how rarely Janey gets sick.  She doesn't get the colds or flus or viruses that go through her classes.  She's missed almost no school days due to illness in years.  William, who was originally also thought to be on the spectrum, is the same way.  Freddy gets everything that goes down the pike and more, so it's not just a family trait to not get sick.  I think Janey's immune system is overactive.  She gets rid of any illness that comes around, and does so overactively.  I can see how at one point, something might have triggered her body to go all out on attack, and mistakenly went for her brain, too.

As with the pregnancy/fever/flu theory, the AID theory could easily explain Janey's autism.  I wish it were the last thing that could, but there's more!  #3 in this series is coming soon.

What Made Janey Autistic...#1 in a series

Whenever I run down lists of possible causes of autism, I find no shortage of reasons Janey might be autistic.  Usually, I'm left wondering how she got away with only one case of autism---you'd think she'd have some special kind of double case.  Today, I read this article, about how having the flu and a fever during pregnancy can raise the autism risk, and it brought back one horrible night very vividly for me.  If this was THE cause, it would be a dramatic, specific cause.  So I'll call this #1 in a series, and try to write about some of the other possible causes in the next few days.

That night.  It was about 5pm, and I was tired.  Not regular tired, but a tired beyond anything I'd ever felt in my life.  I was 12 weeks pregnant with Janey.  It had been a very tough start to the pregnancy.  My blood pressure shot up as soon as I got pregnant, from its normally low levels.  It was very obvious this was going to be a pregnancy like my first one, with William, and not like my second one, with Freddy.  The decision was made to put me on blood pressure medication at an appointment at about 10 and a half weeks.  My regular doctor wasn't there.  The doctor who filled in was someone I think introduced herself as some sort of student, or intern.  I wish I remember for sure.  She wasn't a regular in the office.  She prescribed Aldomet, and said "It's extremely safe for pregnancy".  I took her at her word.

After taking the Aldomet for about a week, I got tired.  Not regular tired, but a bone tired.  My face was pale, not a little pale, but people gasped when they saw it pale.  I figured---I was pregnant.  Being pregnant makes you tired.  I remember driving home that fateful night from picking up the boys at school.  I realized I was fighting off sleep, after sleeping much of the day.  When Tony got home, I lay down on my bed.  Suddenly, I realized I felt very, very sick.  It felt like I had felt that way for days, but somehow my mind had not registered that fact.  I decided I should take my temperature.  I couldn't find the thermometer.  I searched and searched, and was about to give up when I did find it.  My temp was 103.  I knew that wasn't good, even in my dazed state.  I called the doctor, and I am not sure if I even made sense.  I said I was coming in, to the evening clinic.  I think they started to ask questions, but I just repeated I was coming in, and hung up.  I called for Tony.  As he was walking over, I think I fainted.  I fell onto the bed, anyway.  He managed to get me in the car, and we went to the office.  By that point I was shaking violently.  When they took my temperature there, I remember the nurse held the thermometer up for me to look at.  It was up to 104.  They called a doctor quickly into the room.

The visit from there is a little hazy.  I know they gave me an IV right away, because I was extremely dehydrated, so much so it was very hard to get the IV started.  I know they took blood.  And I know after a bit, the doctor came back and said I was having a rare reaction to the Aldomet.  My blood tests showed my white blood cells were dangerously low.  My liver function was dangerously compromised.  I was very, very sick.

They sent me to the hospital.  Again, the time there is hazy in my mind.  I know the doctor there said she had never heard of Aldomet causing that kind of reaction.  She researched, and there it was.  It even has a name----Aldomet Fever.  They took all kind of blood, including a kind of special test where they had to scrub my arm for a long time and took what looked like a soda bottle full of blood.  And, at some point, they did an ultrasound.  There was the heartbeat, beating away.

It took me a long time to get better.  And twice more, doctors said things like "I don't think this was caused by the Aldomet"  I printed out a sheet from a Merck Manual online, listing the three things that constitute the type of rare reaction I had---high fever, low white blood cells and liver disfunction.  One of the doctors, I still remember, looked shocked and grabbed the sheet from me.

Much, much later, just a year or so ago, I learned that my aunt also had a terrible reaction to Aldomet.  I hadn't know this.  I also endured a similar reaction when given a sulfa drug a few years ago.  My records show I'm allergic to Aldomet, but no-one made the connection that people who are allergic to Aldomet often also have a sulfa drug allergy.

I remember asking my OB, after my fever had gone down, how this all would affect the baby.  She said that a sickness so severe at 12 weeks usually would have caused a miscarriage.  If it didn't, she said, the baby would probably be fine.  And I know, based on what was known at that time, she believed that.

So---did the Aldomet-provoked sickness cause Janey's autism?  I don't know.  The fever might have, based on recent research.  What it did do, though, was cause me to never again completely trust medication, or, for that matter, doctor's knowledge of medication.  I am very, very grateful that first doctor caught the Aldomet connection.  She was young, and I think she took the time to look up the possible Aldomet reactions.  The older doctors that later questioned the reaction were probably doctors that had prescribed Aldomet for many years, and hadn't seen a reaction.  That's why they call it rare.  But it happens.

I think about that night a lot.  I think I was dying.  I think if I had kept taking the medication, I would have died.  I know that sounds dramatic, but I think it's true.  And a reaction that serious---it's very possible that would have affected Janey, especially at 12 weeks, which always comes up in what I read as a crucial time in development.  But who knows?  As I've said, there are no shortage of other possibilities. If I believed in fate, I'd say that fate wanted Janey to be autistic, and took no chances in making sure she was.