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.