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Wednesday, September 19, 2018

How Janey would tell the bus story

The start of this school year was marked by bus issues.  The buses that Janey had assigned to her did not have aides on them, and several times, the morning bus simply drove by our house as Tony tried desperately to wave it down.  He wound up driving Janey to school those days.  The afternoon bus twice drove her home without an aide, breaking their own rule (the aide for Janey is not something we requested, but something the transportation department had said she needs) and twice relied on a school aide kindly riding with Janey so she could get home.  Knock on wood, these issues seem to be resolved, thanks to Janey's terrific principal advocating for her.  Janey is on new buses, ones with aides.

I've been struggling to explain to myself and in this blog why the whole bus issue upset me so much.  Every way I tried to write about it, I found myself reading what I wrote and thinking "Yeah, that doesn't sound like such a big deal"  Then, looking at some pictures I took today, I realized that it's a big deal to me because it was a big deal to Janey.  She loves the bus.  She loves routine.  She loves things happening the way they are supposed to happen.  And the fact that it seemed, on the surface anyway, that the bus department didn't consider it a priority to get her to school, bothered me a lot. 

Janey doesn't talk verbally that much, but she talks volumes with her behavior and her facial expressions.  Here's the story of the bus issues, translated by me.  Forgive me, Janey, if I have made mistakes!

"I am so excited to go on the school bus to school!  I love riding the bus"

"Daddy and I are waiting for the bus. It's coming!  Oh, it's not stopping.  Daddy is trying to get the bus to stop.  Why can't I go on the bus?"

"Daddy is driving me to school.  I love to ride in the car, but this isn't right.  I don't go to school in a car!  Daddy is saying goodbye and I am with my teacher, but it's all wrong.  It doesn't feel right.  I'm crying because it's not the way it's supposed to be"

Not the actual bus that didn't stop, but a photographic recreation!

It is the little things, the small inequalities, the minor, not big enough to make a big deal of issues that sometimes are the toughest.  So the transportation department originally assigned Janey to a bus that by their own rules, she couldn't take?  It's fixed now, so why does it still bother me?  Because it's a million small moments like this that add up to block Janey from being fully included.  It's not just the bus passing her by---it's all the times that the small adjustments that would allow her to ride life's bus with everyone else are not made.

Janey---"Now the bus is here!  I'm happy!  I'm going to school!"

It's the little things that make Janey part of the bigger world.  Sometimes, we have to fight for the little things.

Thursday, September 6, 2018

Summer Summary

If I had to use one word to describe this summer with Janey, I'd have to say "uneventful".  Not much happened.  We did very little.  There weren't many huge ups or downs.  And I guess that is mostly good, but of course, as always, I still feel like I failed somehow.  I had big plans to take Janey places this summer, to keep her busy, to plan out our days.  I should really know better, by this point.  I'm not a summer person, and to be fair to myself, it was close to the hottest summer ever in Boston, with much horrible humidity.  On the very bad days that way, and there were lots of them, I felt accomplished if we left the house and the AC at all.  But still...

What DID we do?  Freddy was home all summer, and that was great.  Most every day, we did do a walk to the nearby 7-11, the "ice cream store" as Janey calls it.  And about twice a week, we got lunch out at either Five Guys or Chipotle.  Once a week or so, we went to Whole Foods and shopped.  I had Janey help me water the garden every few days, and that turned into some fun spraying water around.  We "snuggled on Mama's bed", Janey's term for lying together on what is actually her bed, not mine, and me singing to her, reciting nursery rhymes, reading or just cuddling.  And Janey watched TV, plenty of TV. She had a lot of showers, sometimes several a day, which she loves.  In the evenings most nights, she had a car ride with Daddy. That was the summer.

Janey awaits the bus
Most of the time, Janey was fairly happy.  When she got upset, it was almost always because I couldn't do what she wanted right away, because I said she needed to wait a minute for snuggling or a shower or a walk.  That turned into one of my summer projects, getting Janey to understand and honor "wait a minute!"  I would praise her heavily for being patient for even tiny amounts of time, and I started gradually asking her to wait a minute even if I could do something right away, and by a minute, I mean a minute, or sometimes less.  I think she made a little progress with patience.

I had thoughts of working a lot on her "talker", her AAC apps.  I put three on her new iPad, but she almost always chose Proloquo2Go over the other two, including TouchChat, which is the one they use at school.  However, as I've seen in the past, Janey did NOT want me teaching her, or demonstrating for her, or basically touching the apps at all.  I honored this, because I want her to like the apps, and she does.  She often chooses to use them instead of watching YouTube Kids, her usual favorite iPad thing.  She doesn't use them for conventional conversation, but rather sort of play around with, which is fine---it's how you start learning to talk, but I wish she would communicate with them, I do admit.  Generally she'll pick two words and hit one after the other, like "play" and "read" or "happy" and "silly", and will push them in turn over and over and over and over, for up to half an hour.  She seems to delight in this.  I think she loves how it makes having a word be said an easy thing to do.  But when I tried to get her to say what she was feeling, for example, when she was screaming, she'd either push away the iPad or would always pick "happy", as if she wanted to tell me what she thought I wanted to hear.

Janey's verbal talking sometimes improves after being at home and not in school for vacations or other longer time periods.  That didn't happen this summer.  In fact, by the end of the summer, her talking was at one of its lows.  She has been saying very little at all.  As the summer wore on, more and more, she wanted to snuggle, and to have me next to her, with us looking at each other, without talking.  It seemed to make her happy, but it's a pretty passive activity, and I must admit I get bored of it after a while.

I think Janey was excited to go to school this morning.  I will say freely I was excited to have a day with her at school, where I know she is loved and cared for, and where there is a lot of things going on.  I don't regret skipping summer school this year, though.  I think Janey needed that break.  We'll try summer school again next summer, but if she needs another summer off in the future, we'll that.

I hope you all had a good summer, and I hope school is off to a good start!  Much love to all of you and to your girls (or boys!)

Thursday, August 23, 2018

Reflecting on progress at the Whole Foods

At times, progress with Janey can feel glacially slow.  It can stop for long periods, or even go backwards.  However, yesterday morning during a trip to Whole Foods, I realized that Janey has made a lot of progress in the past years, and even just over this summer.

It started with the car ride, and the music in the car.  Earlier this summer, we were going crazy with Janey's constant need to have us switch songs.  We would hear about 10 seconds of a song, and she'd say "Music, please!  Music!" which meant she wanted us to go to the next song.  We decided to gradually stand our ground on a few songs here and there, just calmly saying "I really like this one!  I'm going to listen to it!"  Then after that song was done, we'd switch as much as she wanted to for a while more.  It was surprising how quickly she got used to listening to songs that weren't her total choice, and actually liking some of them.  On this ride, I played a song list of songs from the early 80s, my high school era, and Janey seems to like that era too.  She rocked out a lot and I was very happy!

Janey at the Whole Foods
At the Whole Foods, I realized as we went in that I really don't hold Janey's hand in stores any more.  She's never been much of an eloping threat.  She doesn't run away from us much.  I still always hold her hands on the sidewalk or in parking lots, as she isn't as aware of car danger as I wish she was, but in stores, she does extremely well just walking on her own.  It makes it easier for me, and more fun for her, I think.

I told Janey before we went in that she could pick out some salami.  That's her biggest treat, the extremely expensive salami rack at the Whole Paycheck.  She picked out some very thinly sliced kind that I think if you stuffed it all in, you could eat in one bite, at a cost much closer to ten dollars than five, but a promise is a promise.  And I realized she totally understands now that you have to pay and get out of the store before you eat.  We used to wait until the very end of the trip to get her treat, and then if Tony and I were both shopping, we'd buy hers separately and go right out for her to eat it, but she happily this time dropped it in the cart and didn't mention it while we shopped.

As we walked the aisles, Janey started singing "Oh Susanna"  I love to hear her sing, and she wasn't at all loud, just tuneful.  And we got looks, but not really stares.  Or maybe I'm made progress too, and I don't see things as stares.  We got a lot of smiles, and I felt proud of Janey.  I'm almost always proud of Janey inside, but this was a different kind of proud, a feeling like "Sure, she's different, but she's also so cool, so pretty, so interesting, just a neat kid"  I was on a bit of a high, just thinking how wonderful it was to be walking the store with so few worries about Janey.

We checked out, Janey still being patient, went out to the car, and I asked her if she wanted the salami in the car.  She said no, so I put it with the rest in the trunk.  On the way home, she asked for salami about three times, but each time, when I reminded her we'd have it at home and that it was in the trunk, she accepted the answer calmly.  We got home, and she ate her salami in about two seconds flat.

Janey's reserved look, like at the Five Guys
Today, Freddy and I took Janey to Five Guys for lunch.  Janey looked nervous as we got there, and said as we got out "Whole Foods?"  I said today we were going to a different place, and she didn't fight it.  She said "no" at first as we were at the door, but we coaxed her in, saying "You can have peanuts and french fries!"  She wasn't exactly thrilled to be there, no big smiles or anything, but she sat and eat and behaved.  Thinking about that, it's almost a bigger deal than the Whole Foods, that she would do that well at something she didn't prefer.  She did a whooping kind of scream a few times at the end, not her angry scream but more like a "I just feel like making noise" scream, and we reminded her to be quieter, and she listened and did.  I again noticed looks, but didn't feel they were stares.

It's been a long summer.  And a hugely hot and humid summer, a lot of the time.  But for the first summer in a while without summer school, seeing Janey the last few days, I do think there's been progress, behavioral progress especially.  It's a wonderful feeling, seeing that.

School starts two weeks from today.  I'm still keeping close tabs on that special day.  But I don't feel desperate or close to breaking, as I've felt some summers.  My Janey is growing up, and our journey together, to mutual understanding and compromise and acceptance, is marching on along with the years.

Thursday, August 16, 2018

On Janey being 14, and a day when I was 14.

The birthday girl
Janey is 14 today.  She seems to be having a good birthday.  Both she and her brother Freddy, who shares her birthday (he is turning 21), like best the lowest of low key birthdays, so for once I am totally honoring that.  No parties, no presents, just a little singing of Happy Birthday and later, a candle in a tiny cake.  For Janey, a good day means lots of rides and lots of food she likes, and lots of us honoring her most used phrase lately---"Go away!"---so she can watch her shows without our annoying presence.

As Janey gets older, I seem to do more and more comparing of her teen years to mine.  I mostly enjoyed my teens.  I liked high school, I made some great lifelong friends, I was fairly happy.  That's how it is in my memory, anyway.  I think about Janey's life and feel sad that it's so limited.  She doesn't have friends.  She doesn't do anything with anyone but family.  To her, a big day is one with a car ride and a Happy Meal.  I want more for her.

To get some real world perspective, I decided to dig up an old diary and look at what my life was actually like at Janey's age.  I didn't write anything on my 14th birthday, but I found the next entry after that, about two weeks later.  It was interesting to read.  My life was not exactly a stream of exciting events.  I wrote that in World History, we played "new games" with Jud the Jester.  Who exactly Jud the Jester is is lost to history, although I sort of remember that new games were a thing for a while, non-competitive games, but what that had to do with world history is unclear to me.  I almost fainted in Health.  I do remember that---and I almost fainted again remembering it, how we were learning about compound fractures, complete with a photo.  I watched an After-School Special.  Although I didn't note which one it was, a quick bit of research showed it was "Where Do Teenagers Come From?"  My sister Carrie had her friend Ruthie over.  That was my day.  It sounds about typical for my earlier teens.

The most interesting part was what I wrote after I wrote about the day's events.  Here it is---"There are a lot of things that happen that I don't write in my diary.  Just mostly because I want to forget them, not remember them.  Nothing awful, you know, just not remember-type things."  That hit me.  Not that I remember what those things were, so I guess not writing about them worked, but it hit me that we do edit our memories.  A lot of life is just---living.  And some of life isn't great, not for anyone.  Somehow, realizing that made me feel better about Janey's life.  It's not a typical life, but I think most of the time, she's happy with it.  If she were able to write a diary about today, or about a school day, as I did, I imagine that it wouldn't be that different than mine---what happened in classes, what she watched on TV, a few things that get stored in long term storage memory like the almost fainting, and other things that get purposefully or not kept out of memory.

Janey is not me.  She wouldn't be me, even if she wasn't autistic.  She is her own person.  She doesn't hesitate to let us know what she likes or doesn't like.  I am glad of that.  She's happier today than I remember her being on any other birthday, because she is doing the things she likes.

And so, as Freddy joins his brother William in full adulthood, I'll keep trying to give Janey the best teenage years I can---her own version of good years, not mine.

Thursday, August 2, 2018

Still Screaming After All These Years

This afternoon was hellish.  There is no other word for it.  The morning wasn't any piece of cake either, but things really kicked into gear this afternoon.  It's hot as, well, hell, about 98 and humid.  Janey didn't sleep well last night, and although she slept in some this morning, we all are tired.  I left to go to my therapist about 10:45---the one time in the week that is just for me to rant, as I tell him.  As I left, Janey was screaming for a car ride.  Freddy was staying with her.  I told him if it got to be too much he could call me and I'd come right home (it's right around the corner).  He was a trooper and handled her.  When I got home, feeling refreshed from getting out of the house for once and having some time to vent, I was determined to do just what Janey needed to keep her happy.

She was no longer interested in a car ride.  What she wanted, or thought she wanted, was for me to put on shows for her and then get out of the TV room.  So I did that.  In the course of about an hour, I changed shows literally about 30 times.  Most of these times included tears from her when I didn't immediately understand what show she wanted.  As soon as the show was on, she'd say "Go away!" and point to my bedroom.  I'd go in there, and about a minute later, she'd come in with the remote for me to change the show again.  If I said ANYTHING besides a very cheerful, chipper "Of course!", she would scream---the ear-splitting scream.  One of the times I said "Okay" in a neutral kind of voice, just as an experiment, and that earned an especially loud scream.

About every third show, Janey asked me to cuddle on her bed with her.  I did.  The cuddles lasted at most 30 seconds.  And then---back to the shows, the sending me away, the asking for a new show...

You might ask, very reasonable, why I let this go on for an hour.  The answer is...I'm tired.  I tried the more measured approach the last few days, the #3 approach I mentioned in my last post.  I showed her a timer app, told her "just a minute" over and over, used "first" and "then" to explain...and it wasn't going well.  To say the least.  This morning, with my tiredness and hers, was the breaking point. Very often, just doing what Janey wants keeps her happy.  She does ask to change shows, but not at that pace.  She does scream, but not constantly.  But today, whatever haunts her brain at times was in full force.  I think it's OCD.  The changing of shows and the cuddling for a second and the fact I need to leave the room---all rituals, rituals I think she is using to try to ward off the feeling that something is off, something bad is going to happen, something isn't right.

I know those feelings.  I've had those feelings, so many times.  I am on medication for those feelings.  I understand those feelings---I have the tools and cognitive abilities to know they are a glitch, something off in my brain, a chemical mis-read.  But Janey doesn't.  To her, the compulsions, the rituals, are something that, when she's fired up, simply feel like complete necessities.  And often, doing them for a while calms her.  Not today.

After an hour, I was at the end of my rope.  I turned off the TV and suggested a shower.  That often can break the chain.  Not today.  Janey did want a shower, but she screamed all during it.  She threw my iWatch onto the floor, the watch I was given as part of the Framingham Heart Study to track my movements.  If it breaks, there will never be another one.  It didn't break, but it hit the floor hard.  Janey got out of the shower after a few minutes, still screaming.  I was feeling shaken.  I called Tony, to talk me down, which helped, but poor Tony, having to deal with a traumatized wife and a screaming daughter on the phone.  For a long, long, long time, after I hung up, Janey screamed.  I spoke to her as soothingly as I could, while literally praying for calm.  I am fairly agnostic, but you know the saying about foxholes.

And then---Janey calmed down, for now.  I put the TV on computer mode, so she could pick her own videos, which she is doing.  She hasn't asked for anything during the 15 minutes or so it's taken me to write this.  Just now she's come over and asked for a car ride.  Traffic outside is backed up outside our house to the point that getting out of the driveway even would take a while, and I can't drive when Janey is volatile.  It's too dangerous.  So, she has settled for a walk to the store.

Why do I write this?  It's not, as sometimes parents like me are said to be doing, to get sympathy.  Raising Janey is my job, and my privilege.  Sympathy is not something I need or want, not the kind of sympathy that says "Your life is so hard!"  or "I could never do what you are doing!"  Everyone's life is hard, and most everyone, if they happened to have a child like Janey, could raise them.  It's not to try to get help.  I've given up on that.  The kind of help that would actually, you know, help, doesn't exist.  Additionally, I'm pretty good at taking care of Janey, and today was almost more than I could stand.  I would not put Janey or anyone else in the position of having to try to handle this kind of day.

Why do I write about days like this, then?  I write so others living this life know they aren't the only one.  I write because the most helpful thing ever for me is knowing that there are others like Janey, other parents like Tony and me.  There are lots of people living this life.  I write because that's what I do.  I've always written---diaries, reviews, letters, postcards, stories---I'm never not writing.  I write for the same reason others volunteer time or money, or talk to their congressmen, or run for office, or do research---because it's the way I can try to contribute to others living a life with a child with autism.

But I also write for Janey.  I write because she can't.  I write because she is an amazing, wonderful person who is living a very hard life, much, much harder than I am.  She is dealing with many of the same demons I've dealt with my whole life, but without the ability to understand the tricks the mind plays on us.  She's dealing with parents who sometimes get to the end of their ropes and stop doing the things she feels need doing.  She's dealing with a world that doesn't always welcome her kind of diversity.  She's living a life that is not an easy life, and she deserves to have her story honestly told, as best as I can.  And so my title means both that she still screams, but also that I am still screaming out our story, after all these years.

Tuesday, July 31, 2018

Three ways of dealing with "Do what I want right this second!"

Janey's brother William is currently on an Amtrak headed to see his aunt Carrie, my sister.  He called this morning to Facetime with me, so he could show me the scenery and I could vicariously enjoy his trip.  However, Janey was in no mood for me to talk to him.  She wanted to go to the store.  She asked, and that quickly elevated to asking in a scream, and then plain screaming, and then trying hard to grab my phone away from me, and that failing, to jumping up and down in fury and biting her arm.  At that point, I told William I had to go.

This kind of scenario has happened a lot this summer.  Janey wants something.  She wants it RIGHT NOW.  She is furious not just if I have to say no, but if I say "in a few minutes" or "not right now".  I've been trying to figure out the best way to handle this kind of setup.  Here's a few of the possible ways...

1----Give in and do what she wants.  To be honest, this is what we've usually been doing for the last few years, as those who read this blog a lot probably realize.  After the horrible year that included the psychiatric hospital and then the medical hospital, both for long periods, we made a decision to make Janey's life as happy as we could by as often as we could having the answer to her wants be "yes".  It's not like we always said no before, but we had tried a more moderate approach.  The boys were younger then, and we hadn't yet quite embraces the philosophy that whatever gets us most quickly to a happy and calm Janey is the quickest route also to a happy and calm us.  Of course, there are things we can't do when she asked, but mostly, she seems to get this and just not ask for those things, like car rides in the middle of the night or salami when there is none in the house.  She asks for things she knows we can deliver, if we agree to, and we try to honor her requests.  It's worked pretty well, but this summer, it's wearing us down.  Maybe it's wearing ME down more, as this is one of the longest stretches I've had her all weekdays without any school.

2----Treat Janey as much as we can like any other almost 14 year old.  Say yes when it's reasonable, tell her to wait when she needs to wait, say no if we just don't want to give her what she wants to have or do what she wants to do.  In some ways, this was our old way of doing things.  It also goes with assuming competence, in a way.  We can assume she can learn in the natural way that sometimes you have to wait and something the answer is no.  It's what most people (especially without experiece with Janey's brand of autism) would see as the right answer.  It's what I always did with the boys, and I must say they responded well to it.  A no meant no.  They were not prone to begging or nagging.  I think I said yes often enough when I could that they learned I wasn't just saying no for no reason.  However, the 10 or so years that I tried to also use this method on Janey were, to be frank, a complete failure.  She was unhappy so much of the time, and she didn't learn, at all, what the boys  learned pretty easily---to be patient, to accept no as an answer.  We gave it a good trial.  If I thought it would work, I'd do it again. 

3---Use a hybrid method.  Accept that the way Janey sees the world and perceives the world and understands the world is not typical, no matter how much I presume competence.  But also realize that Tony and I are human beings, that we simply cannot always do what Janey wants, that the boys, although adult now, also deserve to get their ways sometimes, that we are worn down and tired out and need to figure out a way to keep going.  This hybrid method is what I'm starting to do more.  One part is not responding instantly to Janey.  Sometimes, even if I could do what she wanted right away, I say "Yes!  Just a minute, though..." and then I make her wait a minute.  I've done that approximately 10 times while writing this, the last right during the last sentence, when she asked the most common thing she asks---"Cuddle on the bed?"  Also, if she asks for something we will do in time but not for a while, I say yes and then give the timeline---for example, if she asks for a car ride at noon, I might say "Yes!  Daddy will give you a car ride when he gets home!"  He gets home about 5.  I only do that if it's something we WILL do that day---I'm not going to lie to her.  If the answer is just plain no, I say it but then offer a quick replacement.  If she asks for a ride and I know there will be no ride that day, I saw "No ride today, but we can talk a walk to the store right now!"  Or I say no and then quickly make us busy, so the no is a bit buried in whatever else we are doing.

In an ideal world, the #3 method would work.  I think it could work, not because Janey really will start to understand or accept delays or a plain no, but because waits or substitutes or distractions will become part of a routine, part of what she knows is a possible outcome when she asks for something.  The #2 method relies on an understanding of other people's needs and motives that I quite honestly don't see Janey having.  The #1 method relies on us as parents being responsive in a way that worked for a while, but that I think we are getting too old and tired to carry on, even if it did give us a few very nice years.  In reality, I don't know if method #3 will work.  It isn't working too well so far.  And perhaps there is some #4 method I'm not thinking of right now.  Whatever the solution is, or if there is a solution, as both Tony and I press further into our fifties, I think we need to figure it out.

Wednesday, July 25, 2018

A tough day and a scary news article---thoughts on respite

Today was one of those days.  Janey and I were both not in the best of moods.  I tried hard to keep her happy, and I'm sure she tried hard to be happy, but it didn't work out.  From my perspective, I spent hours doing exactly what she wanted---giving her the food she asked for, changing her TV shows, taking her for a car ride, snuggling with her---and then each time I didn't do exactly what she asked the minute she asked, she blew up and screamed at me.  I'm sure her perspective would be different, but I can only speak for sure about mine.  I felt tired, unappreciated, sick of it all.

And then I saw this news piece...  Read it here

But for the kindness of a stranger, this could have been a horrible tragedy.  As it is, it gives an answer, right there, to why I worry so much, why I sometimes give in to despair.  Here, in one of the riches countries in history, in a state with so many resources, THAT'S the best that is offered to care for people like Janey?  I have so many questions about how the man came to be alone on the very busy highway, but at the very, very least, there was some huge negligence going on, and by not reporting him for missing for as long as happened, I suspect some covering up, too.

My friend Michelle and I often joke back and forth with each other when we've had rough days (or weeks or months or years)---"I've got an idea!  Why don't you just get some respite?"  Then we laugh and laugh.  Because basically, there is next to no true respite available.  And when there is, well, that story above illustrates the fears I have of it.  It brought back flashbacks to the one respite I did try---you can read about there here if you wish.

Why is there so little respite, and why, when there IS a chance for there to be respite, or adult care, are there so many problems with it?

There's a few reasons, I think.  One is that unless you yourself have parented, long term, a child like Janey, a child with very little language who functions intellectually at about a toddler level, you don't really get it.  You might be as well meaning as the day is long, but you don't totally understand the EVERY SINGLE MINUTE part of the parenting.  There are no breaks, ever.  You can't let your attention slide.  This does two things.  Because people can't picture how all-consuming the job is, they don't understand why we NEED respite as much as we do.  And when people are hired to provide respite, or, bless them, volunteer to do respite, they often find themselves over their heads.  That was the case with the respite house we took Janey to.  They were hugely well meaning, they were well funded, they were a lovely place.  But they didn't get how much Janey (and other kids, I am sure, but I can only say for sure about Janey) needed to be watched.  

Another reason---our society doesn't value people who care for those with special needs very much.  We don't pay them enough, we don't train them enough, we don't screen them enough.  We as parents care for our children because we love them, because they are precious to us.  And even for us, it's too much sometimes.  I can't tell you how much I welcome Tony's arrival home every night, to give me a break.  I can't tell you how much I look forward to the school bus coming in the morning.  So, if someone else is caring for Janey, someone who is not her parent, I know it's a tough job.  I want that person to be well compensated, well trained and most absolutely well screened.  I want them to be valued, and to be treated as valued, but also I want them held to incredibly high standards.

The third reason is a dark one.  I truly believe most people are very good people.  But some people aren't.  And those people are sometimes drawn to people like Janey, who don't communicate well.  That is a horrible, everlasting fear of mine---that rare kind of person.  Or less evilly, some people snap when they lose patience.  Or simply tune out. Whatever happened the other day with the autistic man in the article---someone "caring" for him either did something cruel and evil, or someone lost patience, or someone tuned out.  And in cases like this, or the case of the many of us with children similar to Janey---well, there can be some very horrible endings.  Or horrible happenings that we never do find out about, because our children can't tell us.  And that, my friends, is why, even in those rare cases where there is respite, or as I look to the future, when Janey needs adult care, I don't have a lot of trust or a lot of hope.  Or a lot of answers.