Wednesday, October 31, 2012

Halloween

This morning, Freddy told me this is the first year Halloween means nothing to him.  He's a sophomore now, and probably beyond the trick or treating age, or the dressing up age (although some kinds at his school still do, but it's mostly a 7th and 8th grade thing).  As he was commenting on that, his older brother William said "Today is Halloween?" That brought it home.  That age has passed for them.  And that made me think about Janey, of course, who has no idea today is Halloween.  Do I dress her up, although she doesn't much like being dressed up?  Do I take her trick-or-treating, although that has scared her the past few years when I tried it?  Do I give her candy, although chocolate past noon makes her stay up all night long?

A great new blog about a family starting their journey with autism talked about this issue---give it a read here.  It's a tough decision.  It addresses one of the issues that isn't unique to families with autistic kids---how much of what we do with kids is driven by our own needs to recreate parts of our childhood we loved, or to try to fix parts of our childhood that were imperfect?  It's impossible, I think, not to do that at all, but in the case of autism, it's more problematic.  Dressing Janey up or taking her out in the dark to go to people's houses decorated with scary spiders and skeletons puts her in a situation she doesn't understand at all, and one that might totally terrify and confuse her.  Thinking of it that way, it seems like a no-brainer.  But there's that part of me that says "But Halloween is such a special time!  I want Janey to be a part of it!"  Which in her case, of course, means I want to be a part of it, because she won't be, not in a meaningful way.  I want to recreate that feeling from childhood of how it was to have one night where all the rules were suspended---where you could go to random houses, ring their doorbells and get candy.  I remember counting the days, and when I woke on Halloween morning, feeling truthfully more excited than Christmas morning.  I remember my fantasies of someday living in a suburb or city, where I could get to a lot more houses than you could in my rural town, where you had to be driven to trick-or-treat.  And I did live that dream, with the boys, for a few years, before they were old enough to go out on their own.

Autism changes a lot of things in a family.  In the scheme of things, missing out on recreating childhood memories is a very small, selfish thing to be thinking about.  But I do.

Tuesday, October 30, 2012

Sandy and Janey

Sandy didn't hit us that hard here in Boston, although school was closed yesterday and it was certainly windy---probably the strongest wind I've ever personally felt, so I never want to feel hurricane force wind.  It didn't cause much physical damage, but Janey was not happy.

I've figured out a while ago that although Janey could never express it, she has a pretty strong sense of time.  Afterschool lasts until 5:30, but I pick her up at 5.  She doesn't mind if it gets stretched to 5:05, but if traffic is bad and I am any later than that, I am almost always greeted by her crying, and someone telling me it just started a few minutes before.  She knows when I should be there.  I wonder if she hears a nearby church bell that rings at 5, or if she's figured out the clocks, or if she just someone knows the time, as some people do.  She also has a very hard time with long weekend.  She knows the weekend should be two days.  The Mondays of long weekends are almost always teary days for her.  She can't explain it---she doesn't say "I should be in school" but she knows.

I am trying to be better about explaining things to Janey that I would think are beyond her understanding, just because we really don't know what she understands or not.  I didn't yesterday, in the excited confusion of a hurricane.  Janey was getting more and more upset.  She hadn't slept well, probably due to the wind, and she was at loose ends.  I finally did what I should have front the start, and said "we had no school today because of the hurricane. Do you hear all the wind making noise?  It's a storm, and it makes us have to stay home from school"  She didn't answer or look like she was listening, of course, but she seemed more settled after that.

Today school is back in session, which was a questionable decision.  Freddy had trouble getting a train to school, as they were running so late, and my niece who teaches reported her room was flooded.  But I'm still glad there's school (although no work for Tony, which does make you wonder how concerned about children the powers that be really are).  I don't think Janey would do well at all with another day off.  So much in the world is beyond her understanding that I think she clings to patterns she has figured out, and when they are upset, she is upset.

Friday, October 26, 2012

Hodge Podge Lodge

The title is a TV show that was on when I was very young, in which a woman who to me looked like a witch had kids over to her hut in the woods and showed them nature things, like cocoons.  But that doesn't really have to do with this post, although I always wonder if anyone but me remembers the show, or if I just dreamt it.  I meant the hodge podge part, a few little notes about this and that to do with Janey.

HP1----  Janey has gotten into Snow White and the Seven Dwarfs.  I've never really watched it before now, and it's a beautifully done movie.  It certainly has scary parts, like The Little Mermaid, but somehow they seem less terrifying, and I'm glad she made the change.  Today she brought it over to me, and wanted to watch it, but couldn't think of the name.  She spoke in that special tone she uses when she is having to think very hard about what she is saying, and said "I want Beauty and the Beast"  Which is very strange, as she's never seen that movie, only clips from it on singalongs.  But it's another Disney movie, and I wonder how the two got connected in her mind.

HP2 ----  This morning, when walking from our parking spot to school, Janey pulled me into a grassy lot near her school, because there were piles of fallen leaves there.  She wanted to kick them as we walked.  I loved that.  It's a universally fun thing to do, and one of those moments where the autism makes no difference.

HP3  ---  A few days ago, Janey was in silent mode.  That's an unusual mode for her, I mean a really silent mode.  She is usually noisy---either laughing, crying, echolalia talking, singing, pretty loud for a mostly non-verbal gal.  But those days she was just silent.  When she did talk to ask for something, she whispered it to me in a barely audible voice.  I really didn't like the silent days.  It threw me into a bit of a depression.  I'm not sure why.  Our family is fairly loud.  Not me on my own, but I've become loud in defense.  We shout from room to room, have animated "discussions" often, sing to ourselves---there are not a lot of quiet moments around here.  And I guess Janey usually fits right in with that.  Having her be so quiet scared me somehow.  She seemed very lost.

HP4  ----  I wonder how often Janey pretends not to know something to get out of doing things.  I used to not think this at all.  But today for some reason, I was showing her an app with aliens, where you had to match the color of the aliens to a space ship that showed up to take them away.  She wasn't a bit interested. She just kept asking for Angelina Ballerina.  But for some reason, I wanted her to try it.  So I said "First match the blue alien to the spaceship, and then I'll put it on" And she did it in a second, with a look on her face I am very familiar with from the boys---the look of "O---KAY!  I'll do it to shut you up"  She had no problem at all with it.  I was surprised, although I know she can do color matching, but the ease and the look were something else again.

HP5  ---  Not that I ever plan on getting a nanny, but reading about the horrible situation in NYC where a nanny killed two of the children she was charged with caring for, all I could think about was why it's so important to me to have Janey be in my care, my husband's care or her school's care, or that of very trusted family and friends.  Not that everyone doesn't feel that way.  But caring for Janey can be incredibly frustrating.  You have to love her to care for her well.  I couldn't hire someone to do that.  And at school, there are many hands to help.  Everyone who cares for Janey there loves her, but if they get overwhelmed, there is someone else there to take her for a bit.  It's another thing that makes autism parenting tough---I know Janey could try the patience of saints sometimes, and that I need to always make sure she is with someone I can completely, totally, wholeheartedly trust.

HP6  ---  I just did what I am always telling Tony not to do---let Janey have a little chocolate after noontime.  No sleep tonight!

Wednesday, October 24, 2012

Ten iPad apps Janey likes

Notice here I didn't say "Ten iPad apps Janey has learned a lot from" or "Ten iPad apps I like".  Over the year we've had the iPad, I've realized if Janey doesn't like an app, it does no good.  It can be the greatest learning app on the face of the planet, but Janey's not going to use it at home unless she likes it.  She knows very well how to use the button to take her back to the menu of apps, and she never hesitates to use it freely if something doesn't interest her.  However, the few apps she likes get used a fairly lot.  Not a HUGE amount.  I wouldn't say the iPad is quite the success with Janey I'd dreamt it might be.  She likes it, but as a toy she turns to now and then.  I think she's learned a little from it, by chance, when an app that appeals to her just happens to have a learning component, but it hasn't been any huge breakthrough devise for her.  That being said, I'm glad I got it for her.  Any toy she actually uses and enjoys is a good toy, and the rest of us have fun with it when she's not using it.  Anyway, here's the list, with links when I can find them!  (in no particular order)

1.  PianoBall

This is a simple piano app.  You get a keyboard that kind of looks like a xylophone, which you can change the color and tone of with little balls above the keyboard.  It plays various simple songs, and has a mode where little stars sparkle above the key you need to play next.  Janey actually does this now and then, but mostly just fools around the colors and keys.  I thought keyboard type apps would be Janey's favorite part of the iPad, but that hasn't really proven the case.

2.  Fish School

Schools of fish form the letters of the alphabet and numbers.  You move to the next letter by swiping across the screen.  This was the first app Janey got into, and she still likes it a fair amount.  It's nice and simple and colorful.

3.  Christmas Song Machine

This app would most certainly not be on MY favorites list, but I would say it's Janey's all time favorite.  It features kind of animated scenes playing with a background of Christmas songs being sung fairly badly.  You pick the song by a somewhat complicated process in Santa's Workshop, which Janey mastered easily, as she does with most things that that she really likes.  If you are into hearing O Holy Night sung annoyingly and repeatedly in mid-July, this is your app.

4.  Elmo's Monster Maker

This is a cool app with a lot to it, but Janey doesn't use it the way it was intended.  You pick a blank monster, and then pick eyes, a nose and a hat for him or her, and the monster comes to life.  The choices change seasonally---there are Christmas ones, there were ones for the Olympics, etc.  However, Janey likes the monsters blank-faced, which you can do, and she then makes them dance to various types of music---disco, Mexican and so on.  She does this over and over and over.  I've often tried to interest her in the faces, but that is not the point for her.  You might have better luck!

5.  Starfall ABCs   

This app is like one that is on the internet, and Janey played it first there at school, and was delighted to find it at home.  You pick a letter block and the app shows a few things that start with that letter.  Some of the letters have little activities, too, like filling in the letters to spell "camp" and getting a camp song.  Janey knows the letters she likes and picks them out, but otherwise, I am not so sure she learns a lot from this.  She enjoys it a great deal, though.

6.  Firstwords Christmas

This one actually DOES teach.  I was thrilled when Janey got into it.  You get mixed up letters of a word, and have to put them in the right place, like a puzzle.  When you do, the app says the word and moves a picture around, and makes a sound.  Janey has played this for hours.  Over the year, I've seen her ability to match letters increase hugely, partly because of this app.  There are all kinds of other Firstwords apps, but Janey is a big fan of Christmas things and likes this one far better than the others.

7.  FindMe (autism)

This is the only app specifically designed for autistic kids that Janey has gotten into.  You find a little boy in an outdoor setting that gets increasing busy as you get better.  When you have found him five times, you get a dancing shapes reward.  Whoever designed this knew exactly what would motivate autistic kids, as Janey will play this for a VERY long time to get that reward, which to me looks very boring, but to her is the ultimate treat.  I wish this game moved on beyond finding the boy, which Janey has gotten extremely good at.  If she had to find letters or numbers or shapes, I think she'd be motivated to do so.

8.  Noodle Words

This is a very, very well designed and cool app.  You open a magic box of words, pick a word, and then play with the word.  For example, "surprise" lets you get all kinds of surprises by touching it.  There are little guys at the bottom of the screen that interact with the words.  It's a nice clean looking screen graphically, so the word stars, and I think Janey has learned to recognize which words she wants to play with.  I wish they'd expand this to much more words.

9.  GoFun

Here's one of those "why in the world does she like this?" apps.  It's a puzzle app.  You pick a picture and then it turns into a puzzle to do.  The problem is that the puzzles are very badly done---with strange divisions into pieces and not great pictures.  Janey is obsessed with one of a leprechaun, and does the first few pieces of it over and over.  She never finishes it.  There are lots of puzzles, anyway, including a bunny one and a clock one she's done now and then.  I've downloaded all kinds of better puzzle apps, or better in my eyes, but they have no appeal to her.

10.  Working on the Railroad

Another app I wish was better, but one Janey likes a lot.  It consists of a video of the song being sung, and then a few "learning games"---putting shapes into, for some reasons, large letters, simple puzzles, etc.  The song is sung nicely and I think having it in the background during the activities keeps Janey working on them, but I wish there were more of them and they were a little better designed.

So there's her list.  This is no means a list of the best apps I've found.  There are many fabulous apps out there, often for free or for very small amounts of money, which is what I love about the iPad.  I'd love it even more if Janey liked more of those apps.  If someone could design a learning app that would truly appeal to autistic kids, they would be a hero in my eyes.  I'd love something that combined the appeal of FindMe with the design of Noodle Words and the letter learning of FirstWords, with music that is well done like in Working on the Railroad, and depth like GoFun.  If there was an app like that, and it was expandable, I'd pay pretty good money for it, and I'm sure a lot of schools would too.  But the designer would have to actually understand autism, or at least Janey's form of autism.  They'd have to get that autistic kids won't work for rewards they don't want, that music and moving objects are a huge draw, that repetition has to be a part of it, but with very gradual changes build in so the kids can't just do the same thing over and over for hours, that you have to design with the kid in mind and not the parents.  You can make a beautiful, full featured, amazing app that kids with autism will never touch, if it doesn't appeal to them.  Or, sadly, you can make a slapped together stupid app that for some reason appeals to autistic kids, and they will play it for hours.  That's life in Autism City, I guess.


Tuesday, October 23, 2012

Ann Coulter made me cry

I am not a political person.  I am what would probably be termed a one-issue person, or maybe two issues---public education and autism support.  I have never watched Ann Coulter, although I am kind of vaguely aware she's some kind of political speaker.  I didn't watch the debates.  I look up enough information on each candidate's views to see where they stand on the issues important to me, and vote based on that, regardless of party.

That is why I was surprised at my reaction to reading about what Ann Coulter tweeted after the debate.  You can read about it here----  link  -----  She used the shortened form of the word "retardation" as an insult to Obama.  I usually don't let things like that bother me; the whole "sticks and stones can break my bones but words can never hurt me" bit is something I believe.  But something about this one really got me.  Why would a public figure, albeit public for being in the media, feel it was okay to use that word as an insult?  And it makes no sense.  It isn't even a case of someone speaking the truth in a harsh way.  But even if it were, WHY IS IT AN INSULT?

My daughter is retarded.  She is autistic and retarded.  I don't give that word power.  It's a  true word, not the most politically correct one to use, but a true word.  Why in the world would that ever be an insult?  It means she has trouble learning, and probably always will.  It means she is behind other kids in terms of being able to talk.  It means in her case she can't read or write or do math.  It says nothing about character.  It doesn't mean she's a bad person or even a good person.  It means something about how she learns.  Do we say "blind" as an insult?  Or "deaf"?  Or "tall"?  Or "blue-eyed"?  Of course not.  They are just descriptions.  Why would you think that using a word that is a way to describe my daughter's intelligence is an insult?  It just hurts.  It feels like I would feel seeing someone kick a puppy.  It made me feel like I was being punched.

Here's a picture of my daughter.  I invite Ann Coulter to come to my house and see her, and call her that to her face.


Sunday, October 21, 2012

A post I liked, and general discouragement

I liked this post from a blog by an autism dad, about how low functioning autism is like a cough.  I haven't tried all the things he has, but I suspect the results would be the same if I did.  Here's the post...

Today is one of those discouraged day.  They come along at random sometimes, not relating really to how Janey is doing on any particular day.  She is fine today, but I am feeling tired and overwhelmed.  Same old same old----how tiring it is having a 2 year old in an 8 year old's body, how hard it is seeing how much so many people are working on Janey learning and how hard it is anyway for her to learn, how frustrating it is to have her so un-toilet trained most of the time, how little can be explained to her, how no matter how used to it I get, how upsetting it still can be when people stare at Janey in public, how endless it all is---how it will not end at some future date, but will go on forever.  How there is no way that this a fun trip to Holland.  How it just isn't fair to Janey.  How despite trying not to think this way, I blame myself for Janey's autism, or rather blame my body for being so bad at being pregnant.  How I have a million fears for Janey's future.  How tired I get sometimes of her making her autistic sound, or watching the same videos hundreds of times, of never ever being able to do simple family things like go out to dinner or go to a movie, NEVER, how worn out I am.  How I read some of my old posts where I am being positive and think "Yeah, who are you fooling?  you can try all you want, but this isn't fun.  This isn't positive for anyone, most of all Janey"

So that's enough of that.  People do tell me they like the honesty of this blog.  So once in a while, I'll just let it out and be honest even when I don't have anything particularly cheery or helpful to say.  Unless it's helpful to someone to know that other parents of autistic kids get very discouraged too.

Thursday, October 18, 2012

Over the American Girl Catalog

I never really dreamed of having a girl for a lot of the reasons I've heard of.  I'm not terribly into frilly clothes, I certainly am not into pageants, I almost never wear makeup or paint my fingernails or buy new clothes.  I never had a dream of a big wedding, or ballet classes, or Disney Princesses.  But I did have one big dream for a girl I might someday have.  I had a dream of getting her an American Girl doll.

Of course, there weren't American Girl dolls when I was little, but there were sure dolls.  And that was one part of being a girl I embraced heartily.  My sister Carrie and I had lots of dolls, and lots of doll clothes.  We each had a doll family, and we played dolls often.  We added a lot of twists to it---our dolls had a rare genetic disease that one after one they were tragically diagnosed with---Ingalls Syndrome.  It was named I think in honor of Laura Ingalls Wilder, although it had nothing to do with her.  It resulted in the dolls being, well, doll-like, floppy and unable to walk on their own.  Despite their challenges, our dolls lived full lives of going to school and visiting their cousins, all of which required a lot of changes of clothes and elaborate setups.  When I was even younger, I had a favorite doll named Janie, after my aunt.  You might guess where Janey got her name---after the aunt and my doll.  Dolls were a huge part of my life.

And then, pretty much as I entered adulthood, there came the American Girl dolls.  The first time I saw a catalog, I knew that someday, I would have a little girl and she would sit with me, looking at said catalog, and we would decide what girl would be hers.  We would order it, and then every Christmas and birthday, we would get a few more of the clothes and accessories.  Maybe, we would get a second doll at some point, so they could be friends.  It would be a wonderful mother-daughter bonding time.  Each new catalog would thrill us.  The doll would be almost like one of the family.

And then, I had two boys.  They are wonderful kids, but despite me trying, they never got into dolls.  Believe, I tried more than most people thought was normal, but they were not doll lovers.  The moment the nurse told me on the phone that child #3 was going to be a girl, I screamed, called Tony and started thinking about the American Girl catalog.  Sick, yes, but I am admitting it here.

You know a lot of the rest of the story.  When Janey was three, old enough to be the age that was supposed to be ready for American Girls, to not choke on all the adorable little accessories, she was diagnosed as autistic. I still of course had my doll plans.  But I put them aside, and realized they were pretty unimportant. That they always had been unimportant, a dream of mine and not of Janey's.  I did get her dolls, of course, and I tried mightily to interest her in them, without success.  She didn't, and doesn't, play imaginatively.  She liked tossing the dolls around sometimes (much like her brothers had), but not certainly sitting them down at their expensive little tables and feeding them their expensive pretend picnic lunches or loading their expensive backpacks with expensive adorable tiny school supplies.  

The American Girl Dolls catalogs kept arriving, of course, and I kept looking.  In most ways, I think I've been fairly good at accepting Janey as she is, but in that one little way, I kept dreaming of a Janey that wasn't.

So it shocked me a bit yesterday when the big Christmas American Girl catalog arrived.  I waited until Janey was asleep to look at it.  And I realized, quite quickly, I was over it.  I no longer cared a thing about it, or about Janey not being the girls in it, playing with their dolls.  In fact, the girls looked annoying to me.  Didn't they have anything better to do in life than pose their dolls?  Were their parents so full of money and stupid as to shell out big bucks for tiny little doll shoes or miniature pastries or Julie's new VW?  Why did all the girl models look so cookie-cutter---diverse on the surface, but all neurotypical?  And why was the American Girl world so phony?  Why did even historical girls have modern aspirations?  Why is every doll and girl thin and perfectly groomed and able to afford vast numbers of accessories?  Why are they all into sports and fair play and friends?  Why are none of them shy, or awkward, or preferring to sit and read over getting out there and having exciting yet safe adventures?  Why are none of them autistic?

I realized I no longer long for that world, which I guess has always been more than just a doll thing.  I don't long for that life, the life of the perfect American Girl, or American girl in lower case, the dream we are supposed to dream of.  I still wish life was much easier for Janey.  I wish she wasn't autistic, because that is a hard life for her.  But I don't wish any more, not at all, for the girl that would want an American Girl.  I'm over that.  I have the girl I have, and she is just as much an American girl as any of them.  More so than the plastic, accessory rich, expensive version, because she is real.

Wednesday, October 17, 2012

Why Janey will never be on Barney

Janey has gotten back into a favorite Barney show, a Top Twenty countdown of songs.  I was watching it with her a bit this morning, and was struck by how the show strives to be very inclusive---children of all races, kids with Down Syndrome, deaf kids, blind kids, kids in wheelchairs---it's nice to see.  And then I thought---why never any kids with autism?

And of course the answer is obvious.  A child with autism on a kids show would be a disaster.  They would not act, they would not be with the program.  They would not appear to be "one of the crowd" which is always the message of kids shows---we are all the same inside.  Except kids with autism.  They are different inside.  They would cry when they were supposed to be happy, they would laugh when the scene didn't call for it, if they were verbal, they would talk about trains or bridges or whatever else they like, not the topic at hand.  They would not be automatically friends with everyone else.  They just would totally disrupt the whole message.

It's an interesting problem.  It creates a bit of a public relations nightmare for autism, I think.  It's why you never seen fundraisers or public service ads or posters featuring actual kids with autism.  One part of that is that they don't stand out enough.  Just a picture of Janey doesn't broadcast anything.  Sometimes, of course, she has "the look", but that's something you see more if you know autism already.  Many pictures of her look completely "normal", except, if I might boast, extra beautiful.  And the other reason is that kids with autism stand out too much.  It seems very, very important in our society to send a certain message---that once you get to know someone, you will see they are just like you.  But that doesn't work with autism.  In some ways, of course, it's true, but in many ways, it is not.  Janey's not going to get with the program at some point.  She's never going to part of the happy Barney crowd.

So what would I like?  How would I want the media to handle autism?  What I'd like is probably too much to ask.  It would be that they would show autism as it really is.  I'd love to see a Barney episode with a Janey in it---someone perhaps thrilled by the music, dancing around to her own beat, then maybe overwhelmed by all the sound and action, crying a little, then laughing hysterically at her own internal joke, and maybe, just maybe, if she were in the mood, hugging Barney.  When she wanted to, if she wanted to.  I think letting people see what a child with autism is really like would go a long, long way to helping the many autistic kids out there be understood and accepted.

It won't happen.  If autism ever makes it into the kids' media scene, it will be a child with very, very high functioning autism, a verbal child who is a little quirky but essentially with the theme---like you and me.  Someone who can act.  Can act normal enough to be on the show.  Which is a sad message.  We all should be accepted---except those who just somehow really aren't like the rest of us.  We will just pretend they don't exist at all, because there is no way to easily include them in the big happy dance.

Monday, October 15, 2012

The storm has passed

Janey had a tough week last week, but knock on wood, it appears to be over.  It happens like that time and time again---a rough time, followed by a cheerful time.  And the cheerful times are longer, lately, which is wonderful, but it doesn't make the crying weeks any easier or more able to be explained.  It does help, though, to know they seem to resolve themselves.  When Janey has a tough week, it affects everyone around her, both at home and at school, and when she cheers up, everyone around her cheers up too.  The principal told me today what a good day Janey had had, after her tough week.  It amazes me that she has over 200 students but still is able to notice Janey's moods and take the time to tell me---that's a sign of a very caring principal.  And also a sign of how strongly Janey's moods project themselves.

I wish I knew what caused the tough times.  I've asked myself that here over and over.  They come out of the blue, storm over us and go away, like a winter snowstorm.  I do think there is something cyclical about them, something a little bi-polar in a way.  But I also think they feed on themselves.  I think when Janey starts to cry, it bothers even her.  After all, she has to live with the crying at every single moment, and she probably has no idea what is causing it either.  It's a lot to ask her to calm down.  She has no idea how to, and she is mentally much like a 2 year old in the middle of a tantrum.

We are still on edge a little.  When a storm has just passed, we always are jumpy that we are just in a lull, and she will start the crying again.  I think she feels that way too.  Driving home tonight, she was upset by the music I was playing, and I could see her trying hard not to get hysterical.  She looked nervous---a look I've never quite identified in her before.  She was crying in little puffs---trying to not let it out.  I think she was thinking (non-verbally, probably) "Here we go again.  I can't start the whole crying bit over.  But I don't like the music.  I don't know how to get that across.  I've got to stay in control..."  It was painful to see.  I try to give her the words "I don't think you like that version of Jingle Bells.  I can put on another one"  She looked relieved, for a minute, but then something was wrong with the new version, something she couldn't explain.  Not being able to use words at times like that would be enough to make anyone cry.  I guess in some ways, it's more amazing that she's happy as much as she is than that she gets sad sometimes.

Saturday, October 13, 2012

Kind of sort of toilet training

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

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

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

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

Friday, October 12, 2012

The kindness of kids

The other day, someone asked me if Janey gets teased at school.  I was actually surprised at the question---thinking "Of course she doesn't!"  But I realized that back in the day, when I went to school, or at many schools today, I bet she would be.  She cries, she yells, she can't talk much, she waves her arms around strangely, she sings random songs, she wears pullups...plenty of teasing fodder there.  And at some point in her life, she probably will be teased, although thankfully (or not) she won't understand what is happening.  But at her school, the whole culture is one that would abhor teasing.

I saw a beautiful example of inclusion at work this morning.  We got to school a little early, which I love to do now and then, just to get to see Janey with other kids and to have a minute to talk with people.  We were outside, waiting for the bell to ring, and Janey ran away from me a bit.  I went to go get her, but before I did, two of the boys in her class, who were previously heavily involved in a game of tag, ran after her and took her hand and brought her back.  They did it without being asked, without making a big deal of it, without interrupting their game for more than a minute.  They did it because it came naturally to do it.  And it made me almost cry.  They are learning far more at school than academics.  They are learning that we are indeed our brother's (and our sister's) keepers.  They are learning to care for those that can't care for themselves.  They are learning to be good citizens, to be good parents some day, to be just plain good people.

And does all this caring for other come at a cost academically?  No.  In a word, no.  Janey's school, the Henderson Inclusion School, was the top elementary school in Boston last year when judged by test scores. The inclusion HELPS academically.  Part of this is because each classroom has two teachers, and usually an aide or two, which is possible because of the kids with special needs.  The funds that would otherwise pay for separate classrooms or schools for them allow for staff that help ALL the kids.  But I think it's more than that.  I think an atmosphere of love and understanding and caring is one where it's far easier to learn than it is in a atmosphere of competitiveness, self-centeredness and "let's not let the weird special needs kids disrupt our budding geniuses"  type feeling.

I say this not just as a parent of a child with special needs, but a parent of two other children that went to the same school---one with no special needs, one with mild special needs that did not affect his academics.  They are both fine students, and more importantly to me, they both understand that there is more to life than that.

I know inclusion isn't perfect.  I am aware of its limitations.  I know there are cases where it just doesn't work, and I know in some ways Janey might achieve more in a classroom with only other autistic kids.  But I say, only half tongue in cheek, why should I be so selfish as to deny the "normal" kids in her class the chance to get to know her?

Thursday, October 11, 2012

Crying in the car

Janey's crying spell has continued over the past few days. I'm hopeful that this morning seems better---no long screaming spells yet, knock on wood.

The hardest part of the crying, and a part that seems worse lately, is the car crying.  The past few car rides, Janey has been screaming.  We have a lot of time in the car each day, driving to Janey's school.  Depending on traffic, it takes from 20 to 45 minutes to get there.  Most of the time, this isn't a bad trip.  We listen to music, and Janey generally is happy.  But lately, she is not.  Sometimes sets her off, and she's OFF---screaming hysterically.  It makes it very, very hard to drive.  I am not a happy driver under the best circumstances, and when I can't concentrate well---it's a bit scary.  I can't comfort Janey while I'm driving.  I have to just ignore her, which in her case and I'd guess the case of a lot of kids with autism, neither encourages her crying nor discourages it.  It has very little effect on it.  It certainly doesn't stop it.

I think it's the music that can set her off, or also the lack of it.  I've tried NOT playing music when she seems prone to a bad trip, but she asks for it, either just music in general or a specific song.  Lately, it's Jingle Bells. The problem is that she has realized all songs end after a while, and she has figured out when they are close to ending, and that upsets her greatly.  She doesn't want a song she likes to be over.  She'll get upset the second she realizes the song is ending.  So what's the problem, you might ask?  Why not play it over and over?  Well, she doesn't want to hear it ENDLESSLY.  She knows exactly how many times she wants to hear it, and hearing it more times than that can cause screaming also, and the awful state where the song is stuck in her head and she doesn't want it to be, and she sings it over and over in a horrible unbreakable chain.  One thing that sometimes works is getting lots of versions of the same song, so she can hear it over and over without the exact repeat.  That used to work better, but now she is more discriminating about what genre she wants to hear it in.  If it's a little more jazzy than she likes, or a little more blues, that gets the screaming going.

Often, I resort to keeping her eating.  It's hard to scream when you are eating.  I'll give her chips or popcorn.  She doesn't have a weight problem, but I do want to keep it that way, and I don't want her eating chips 24/7, but if it stops the crying long enough to drive, I don't much care what the long term consequences are, as the short term consequences are a fiery car crash due to me not being able to pay attention to the road.

Toys sometimes help a little.  I buy big bags of stuffed animals at my favorite thrift store, and hand her one at the beginning of many drives.  She usually half ruins it while we drive, tearing it to pieces, but it keeps her happy.

On the really bad days, though, nothing works.  The crying and screaming has a life of its own.  It builds on itself, feeds on itself.  I get to the school or get home drained, completely tired, out of patience.  I don't have a solution.

Tuesday, October 9, 2012

Good Old-Fashioned Crying Night

I must have a huge ability to put bad times out of my head.  Maybe it's something that you develop with special needs parenting, so you can go on and face each new day.  If Janey goes a few weeks without a huge crying spell, I can almost let myself think it will not happen any more, despite all evidence to the contrary.  I can let the harsh edges of the last time soften in my mind.  I guess Janey felt I needed a reminder, as tonight was a good ol' cryfest.  It was probably my fault.  I had library books I needed to pick up after I got her at after-school.  She seemed okay, and she had a snack in the car, so I thought we could risk it.  She was good in the library (I just go to the desk and pick up books I have ordered).  She even said "thank you" to the nice librarian who gave her a rubber bracelet for being good (they know her and are better with her all the time, one of the reasons I always go to the same branch at the same time).  But as soon as we got back in the car, she freaked out.  I think it started because I didn't take her to the CVS for a treat after the library. I hadn't said I was going to---I'm trying to gradually phase that out, so I only do it every other time or so.  But Janey I think knew things were off.  She didn't say anything, but stood for a while at the door before getting in the car, as if to say "Forgetting something?"  If she had asked verbally, I probably would have taken her.  But it was getting late and I didn't.  She started screaming in the car, which is a half hour of screaming while driving in stressful areas.  She screamed in the house, despite Tony giving her everything she wanted for supper and then also getting her a Happy Meal.  She screamed pretty much non-stop until she fell asleep.  I mean SCREAMED---with a loud, loud voice.  It doesn't take much of that until I'm a wreck.  I try to be totally calm, to talk to her calmly, to rub her back or encourage her to take deep breathes, to understand what is wrong and try to fix it.  But none of it works, pretty much ever.  And all my theories and good feelings and understanding becomes hard to access, and I just want her to stop.  I go numb, saying the right words to her while in my mind going to some far away place where she isn't screaming. The boys get upset---they can't work.  They go elsewhere to do their homework.  Tony and I can't talk.  Even the cats get spooked.  It's a long night.  It's a crying night.  And I hope like heck it's an isolated night.

Sunday, October 7, 2012

The Autism Wardrobe---Dressing Janey

You would think that clothes would be one of the areas where kids with autism and others would not be too different.  There isn't an autism uniform.  But as I was thinking today when shopping for Janey, there are actually a lot of issues involved in clothes.

First of all, there's the toilet training issue.  Janey is not fully trained.  She is much better than she used to be, but far from completely successful at using the potty.  That causes a couple clothes problems.  One is the need to make her clothes easy to get off, for her or for anyone else helping her with the bathroom.  Elastic waists are important.  You can't use belts or complicated flies or buckles.  Also, not many clothes for an 8 year old are made to work well with diapers (or pullups, or overnights, or the various names diapers for bigger kids are called).  She needs high waisted pants that aren't extra tight.  Today's fashion seems to call for low waists, and so many pants I've tried for her don't cover the pullup.  She also has lots of accidents, even with pullups on, that cause her clothes to be soaked.  So the clothes need to be easily washable---no hand wash sweaters or the like.

Then there's her habit of mouthing things or fidgeting around with things.  Clothes can't have anything easily pulled off or put in the mouth, like hanging decorations or big buttons.  Zip front hoodies or tops or sweaters are also a very bad idea.  I don't know how many times Janey has ruined a zipper on first wearing of a piece, by zipping and unzipping all day long and getting it stuck.  She also occasionally gets into biting her sleeves---thankfully not all the time, but when she does, you need some thick sleeves to not rip them all to pieces right away.

The next thought is age-appropriateness.  In one way, it's a mother's dream to have a child that doesn't have clothing preferences and knows nothing about fashion.  I can dress her however I want.  However, that can mean that I dress her unlike her peers, because that's what I like.  I am not going to dress her like a mini-streetwalker, as fashion sometimes seems to dictates for even pre-teens lately, but I don't want to dress her all in cute little outfits that would look good on a 2 year old either.  I try to keep a little eye on what other girls her age are wearing, and get her clothes that are somewhat like them, within reason.  But if I mess up, and dress her in some horrible fashion no-no, she's not going to notice and tell me.  It's all on me.

And then there's just little oddities she has.  She is not nearly as tactilely defensive as I know a lot of kids with autism are, so the textures of the clothes are not as important as with some kids like her, but she occasionally just doesn't like something, and won't wear it.  Which is of course something all kids do, but with Janey, I have no idea why, and so can't learn from it to avoid getting her other clothes like the offensive one.  She also gets, once in a long while, hugely attacted to a certain piece.  For a long time, it was a rainbow top, with rows of sparkly rainbow sequins.  I hated it, of course, but she managed to find it all the time, even in laundry baskets, and had no understanding of dirty clothes or clean clothes or weather---she just knew she wanted it on.

Janey's favorite thing to wear, though, is as little as possible.  As she get older, we are getting stricter about her keeping her clothes on.  I guess a lot of kids on the spectrum like to do a Lady Godiva act, but she is getting close to the age where it just can't ever happen.  She does seem to get that she can't take off clothes at school, but at home, she still often tries.  Last summer, we came in from playing outside the minute she tried to take off any clothing, and I hope that made an impression on her.  It's a struggle.

Still, with all of this, I am thrilled to have a little girl to dress.  I have to admit, after two boys, it was one of my first thoughts when I found out Janey was a girl that finally I would be able to have a reason to look at the dresses in stores!  And I have had a lot of fun dressing her over the years, and I will in the future.  It's one of those areas with a trade-off.  I'm not going to having to forbid clothes much.  They will be up to me.  And I hope I do a good job being Janey's dresser.

Saturday, October 6, 2012

Dreams of Janey at 30

When I was around 10, I was fascinated with the idea of being 30.  It seemed like it would be a magical age, when all the college and early adulthood would be paying off and I'd be living my real life.  I even wrote a letter to myself at 30, asking what was up with me---was I married?  Did I have kids?  Where did I live?  Was I happy?  Now of course at the ripe old age of 46, 30 sounds pretty young and far away, but I was thinking about that obsession the other day, and got thinking about what life will be like for Janey when she is 30.  My daydreaming took me to several futures for her.

First was the outright anything goes dreaming, where reality does not interfere.  In that kind of dream, Janey somehow wakes up "cured" of autism, completely "normal".  She catches up in school and goes ahead of everyone.  She goes to some exclusive college, gets a high level degree, meets some handsome, rich and kind man, gets married and has beautiful grandchildren for me, who I babysit while she works part-time at a very high paying job.  She buys me a house with an indoor pool.  The world beats a door to our path to figure out how Janey overcame her autism, and we co-write a bestseller about that.  It's a fairytale life.

Then I jolt myself back to reality and think about what kind of actually rooted in real life future I'd dream about for Janey at 30.  In that future, Janey lives with Tony and me.  We are healthy enough to care for her well.  She goes to a high quality day program, where she has interesting experiences and maybe does some kind of sheltered work.  She has her own hobbies and interests, which she pursues in the evenings and weekends.  Several times a year, she goes to a respite home, so Tony and I can vacation or just rest.  She sees this as a vacation too, and it's the same place that someday, when Tony and I can no longer care for her, she will live.  She is happy, as happy as anyone else is, and maybe a little more so, because she has less responsibilities and things to worry about than the rest of us.

And of course, sometimes I start to have the future visions that are nightmares.  Tony and I are gone, or too sick to care for Janey.  She is living in a horrible situation, where she is not well cared for.  She has regressed, doesn't talk, cries all day.  She is too heavily medicated.  She spends her days watching videos over and over and over on a TV that doesn't even come in well.  I close down those visions quickly.  They are too hard to think about.

I tell myself not to borrow trouble.  Janey is only 8.  It's a long time until she'll be an adult.  But time goes quickly.  William is 18 now, and I have no idea how that happened.  Before you have kids, you think people overstate how fast times goes by, but once you have them, you realize they understate it.  It couldn't be more than a few years ago I first saw my tiny preemie William.  But here he is, a senior applying to colleges.  And I know that time will do that trick again, and Janey will be an adult.  And barring the kind of miracle my first dream illustrates, we won't be sending her off with our best wishes.  We'll be caring for her, and depending on a society that might or might not be prepared to provide help to Janey and the many others like her, the autistic people that are no longer cute little kids.  It's yet to be seen if that will be a dream or nightmare.

Friday, October 5, 2012

Just Pictures!

It struck me I've never put any older pictures of Janey here, from "before", before her regression.  Here's a few, and some more recent ones.
All eye contact here!  And pretty darn cute, I must say!

Making great eye contact, and loving music already!

Above is William, Janey and Freddy, when she was two, I think.

This one and the one below show the autistic look she developed at around 3---not all the time, but often.


Janey loves her Daddy!

She was very excited to dress up for Halloween that year, when she was 6, but when we tried to trick-or-treat, it was a no-go!

It's the middle of the night

This middle of the night post is brought to you by Janey having woken up at 3:30am.

I have to be fair---most of the time, Janey sleeps fairly well.  I'd say 6 nights out of 7, she goes to bed at around 8pm, sleeps through the night and wakes up at 6am, when the rest of us do.  We are not a late night family, and that schedule works well for all of us.  However, the 7th night is pretty tough.  I know there's a lot of autistic kids, and non-autistic kids too, with bigger sleep problems, but being awake in the middle of the night doesn't do much for your sense of perspective that way.

When Janey has a rough night, it follows the same pattern almost every time.  I can barely remember a time she had trouble getting to sleep.  The 8pm or a bit earlier bedtime is almost completely consistent (knock on wood).  But on the rough nights, she wakes up around 2 or 3am.  She is wide awake, and she wants the day to start.  There is absolutely no keeping her down.  She seems to feel it's morning, and the rest of us are slackers.  She wants to start the morning routine---have some breakfast custom made for her, watch her TV shows, maybe go outside, sing or scream loudly---all that fun.

This is another area where this is no parenting guidebook that works.  If a child is eight, all advice centers around reasoning with them.  You are supposed to be able to firmly say "It's night now.  Go to sleep." and then if they don't, telling them they have to at least stay in their room and leave you alone so you can sleep.  That is not possible with Janey.  She can't be left alone---ever ever ever.  If she's awake, we have to be awake.  The fact we want to sleep has no impact on her.  She doesn't do things to make us happy.  She's not going to think "Gee, it just isn't fair I should keep my parents awake all night"  She isn't influenced by our disapproval, or even our anger.  She is like a one year old, but with one big difference---you can't put her in a crib.

So what do we do?  For a while, we still try to keep her down.  We try to keep her in bed.  We point out it's dark out, and it's still sleeping time.  Ha.  That's a good one.  She continuously gets up, flips on the lights (that's always fun when you're dozing off), checks if the fridge is bungee-corded shut or not, checks the doors to see if she might be able to pay her uncle upstairs a little night visit, tries to get the TV set up for her shows...and of course we are up by then.  And we resort to TV.  We put on one of her favorite shows, and get on the couch and try to rest while she watches it.  We can't go to sleep, because she can't be unsupervised, but we can rest a little.  And hopefully, she gets into the show.  More often, she decides after a little while she wants a different show, or some strawberry milk, or "snuggle on Mama's bed" (which would seem hopeful, but it never results in sleeping)

The funny thing is that this night wakefulness never bothers her the next day.  People say "oh, I bet she'll nap!" but she doesn't.  She never seems the slightest bit tired from being up at night.  We are, of course.  While she's at school, after a night like tonight, I often nap.  Lovely, wonderful naps.  I love them, but I hate them, because they use up the limited time I have to myself.

And so, here we are.  Janey is watching Kipper.  I am fending off her requests for strawberry milk, and fending off the overwhelming urge to sleep.  Luckily, it's getting closer to 5, when I often get up anyway.  And so we go on.

Thursday, October 4, 2012

"I'm just here for the Yo Gabba Gabba!"

One of the interesting parts of having a blog is being able to see stats on it.  I try not to get hung up on them.  I don't really write this blog to get stats, or to count up how many followers I have, or so on.  Mostly, I write it because I have to---because when I am overwhelmed with the life of a mother of a child with autism, I have to write.  I've always reacted to life's tougher moments that way, which is why high school required about 10 diaries worth of writing for me, none of which I hope anyone ever reads, unless you are very interested in hearing about what boys talked to me in study hall or on the bus, with detailed analysis of what they were wearing and what they REALLY were saying between the lines and what a nasty person the new girl they are going out with is...you get the picture.  I write because I am compelled to write.

Lately, however, in looking at the stats for this blog, I see a huge amount of new people looking at it, and almost all of them are here because of a post I wrote about Yo Gabba Gabba, in which I included some pictures.  I guess some search engine directs people looking for Yo Gabba Gabba information to here.  I wonder if they are kind of disappointed by the extreme lack of solid info on DJ Lance Rock and the crew once they get here.  If you are one of those readers, I wanted to just say "hi" to you, and to say---stick around and read a little about autism, if you wish.

You might be saying now "No, sister, I have no interest in autism.  My kid is fine.  Maybe a little seriously into the whole gang of monsters on Yo Gabba, but no autistic!"  And I say---I know.  I have some non-autistic kids myself.  But chances are, whether you have a child with autism or not, if the current statistics don't lie, you are going to be encountering some kids with autism along the way.  They maybe be included in your child's class, or they might be in a special class at their school.  You might see them at the playground, or at the beach, or on a bus.  You might have one as a niece or nephew, or the child of a friend.  But unless you live in a world very unlike mine, you will intersect at some point with autism.  And you might want to learn more about it.  It's a pretty interesting world, if I might say so.  It's also a tough world.  Maybe that glazed-eyed woman in your office is dealing with an autistic child.  Maybe that kid at the grocery store throwing a tantrum is a poster child for the autistic spectrum.  Maybe the boy in the class your daughter is telling you about, the one that only wants to talk about bridges or Thomas the Tank Engine or flags of the nations, maybe they are autistic.  They are out there everyplace!

So, if you happened on this blog but you don't have a child with autism, welcome!  Before I had a child with autism, I read a lot about it, just because it was interesting to me.  The reality of autism is not quite as interesting as reading about it was, but I understand if you are just curious, if you just want to glimpse another way of thinking.  And if you learn a little about what the autistic world is like, all the better!

Wednesday, October 3, 2012

New thoughts about crying

The book I read yesterday sent me off on a bit of a thinkfest, which is a good reason to read books you don't totally agree with, or books that give you a new perspective on old problems.  The author was talking about a statistic on how many people with autism are non-verbal, and giving a reaction to that from some autistic bloggers who don't talk verbally.  They said the definition of what is "verbal" is too narrow, and that even if people don't talk, they are verbal if they communicate in other ways, the way that sign language is certainly a form of being verbal.  They mentioned sounds, body movements, typing, drawing and the one that got me thinking, crying.

I realized I don't see Janey's crying as communication by itself.  My typical reaction to her crying is to say "What's wrong?  Tell me why you are crying"  I often add "tell me in WORDS"  I have never really seen the crying as talking in itself.  But I guess it could be seen as thus.  It's saying "I am sad" or "I am angry" or "I am overwhelmed" or even just "I don't know how to react here".  Of course, I think after a while the crying feeds on itself, and the 2nd or 3rd or 10th hour of crying is not quite the communication that the first bit of crying is, although I suppose some might argue with that.  But that first bout of crying---what if I treated that as a spoken utterance, and reacted to it like that?

I tried it this morning.  Janey has gotten into watching "Angelina Ballerina" again, but a different version of it, one that has 3-D looking graphics instead of cartoon ones, and in which Angelina seems a little older.  She's watched two sets of these on Netflix, but prefers one of them.  As I often do when she asks for a show, I put on the less preferred on, just to try to stretch her horizons a little (if she specifically asks for a certain episode, I put that one, but if she just asks in general, I don't)  She watched until it got past the intro part that was the same, and then started to crying hysterically.  I was about to say my typical "What's wrong, sweetie?  Tell me what's wrong!"  but then stopped and thought "I know perfectly well what's wrong.  Why not accept her crying as that?" and said instead "You are very sad I put on the Angelina Ballerina you didn't want.  You are so sad you are crying!  Let's fix that right away!"  Janey gave me a look that stopped me cold, a look like "wow.  I can't believe it!"  She stopped crying, and started watching the new show.  I then said "if you don't like this show either, you can tell me.  Or you can cry to tell me"  She looked stunned, truly stunned.

I didn't make the connection until just now, but this morning, walking to her school from where we parked, twice Janey stopped and looked up at me, right in my eyes, and smiled a huge smile.  When we got to her classroom, instead of turning away and acting like she had forgotten already I exist, as she usually does, she stopped, held me hand and said "I want to take a little walk".  And so I took her for a little walk around the school before taking her back in the room.  This behavior might be unconnected, but it was very unusual behavior for Janey.  Maybe I did hit on something.

Of course, as I've said here over and over, I don't always have any idea what has caused the crying.  But I could just say "You are sad!  You are telling me you are sad!" and comfort her, without having to know.  Or I could guess, and hopefully hit it right.  But I think it's my attitude that I will try to change most.  Crying is communicating---a very basic thought that I hadn't really grasped until now.

Tuesday, October 2, 2012

Autism Pride

I just finished a book which was very thought-provoking, "Weather  Reports from the Autism Front" by James C. Wilson.  He writes about his 26 year old son, Sam, who is autistic.  Of all the books I've read about autism, this one was the most tuned into the autism acceptance movement.  The author reads a lot of blogs written by autistic adults, and works very, very hard to give his son the best life he can.  At times, it seems like he does this to the detriment of his own life and, from when his son was younger, to the detriment of his other two children's lives.  Sam comes first, in all cases, it seems, whether he is interrupting the author's teaching, hitting the author, demanding attention during the few times the author gets to talk to his adult daughters, etc.  I felt a little put to shame by his devotion, but I can see where he is coming from.  He also talks a lot about the major autism organizations, like Autism Speaks or ASA, and doesn't like them much, as their focus is very much on fundraising to find a "cure".  I can agree there.  The point I most liked was about how on days like Autism Awareness Day, you would think there would be events for actual autistic people, but instead there are fundraisers, golf tournaments, walks----things to raise funds and awareness, but not to help those of us with lives already affected by autism.

The book also pointed out something I hadn't thought that much about.  When there is talk about finding a cure, or a cause, of autism, that is not really talk about curing the kids who currently HAVE autism.  It's about preventing more children being born with autism, through pre-natal screening, or it's about figuring out very early a child might be prone to autism and preventing it from ever really showing up.  It's like saying "It's sad you are in a wheelchair, but instead of creating curb cutouts and putting elevators in buildings, we are going to work hard to make sure no MORE people are in wheelchairs"  Admirable in a way, but it pretty much makes the person in the wheelchair a sad side note.

I loved it that the author found his son interesting and funny.  Although he says a few times Sam is low-functioning, I guess that would make Janey EXTREMELY low functioning, as Sam can read, was doing regular schoolwork until 7th grade, uses words like "oxymoron" correctly and so on.  But Janey, even without being able to do things like that, is amazing sometimes.  This morning, as she did her random line reciting all the way to school, I was in hysterics over and over with her phrase choices.  One was "Apprehend that criminal!  Wait, he's not a criminal, he's a Care Bear!"  She also says much of the Lord's Prayer now, but inserts a lessor-know line in the middle "Along came a spider, and sat down beside her", which, if you are listening mostly to the rhythm of the words, fits rather well.   We never know what she will come up with next, what song will be her new favorite, what show will delight her next.  I think sometimes we parents of children with autism feel we are supposed to not enjoy the quirky traits, that anything that isn't "normal" needs to be extinguished.  That's an area where I am very with the autism acceptance and pride people.  There are parts of being autistic that are amazing, interesting and unique.

However, I don't think the author, or some of the autistic adults quoted in the book, truly get autism like Janey's.  I hope Janey will be able to self-advocate some day, but I am not sure she will.  I am not going to dismiss the lives of my sons to solely concentrate on Janey.  I think Janey deserves as happy and full a life as she is capable of, but so do they.  And so do I.  I want a world where Janey is accepted, is loved, and is cared for, and where I can feel pride in what she can do, while still admitting how hard what she can't do is for her, and for us.  I guess I want it all.  And who doesn't, for their kids?