Janey and the Eclipse

 Seeing a total eclipse of the sun has been something I've wanted to do ever since I was aware such things existed.  So last week's eclipse, which was total in parts of my home state of Maine, was a must-see for me.  Luckily, we have dear family friends that also wanted to see the eclipse, and we all (fifteen people total, from their extended family and the five of us!) headed to Presque Isle, Maine for the big event.

In the weeks leading up to the trip, I was nervous about how Janey would do.  She likes car travel, but lately, not long trips as much, and this trip was going to be about seven hours each way if we didn't stop at all, and you know we are going to be stopping!  With Janey's moods, if we had hit the wrong mood cycle for the trip, it could have been close to a disaster.  But, as with many things on this special trip, we hit it just right.  I am pleased to say Janey could not possibly have been much better for the whole trip!

We rented a minivan, and left very early Sunday morning.  The five of us (Janey's brothers in their 20s, William and Freddy, and Tony and me) are all early risers.  We were out of the driveway by 5:30am, which was a good decision.  The traffic had been a worry, but it was light, and it stayed light the whole ride up.  We drove up slowly, stopping often for bathroom breaks and food and coffee.  Janey slept some, but mostly spent the ride as she spends much of her time at home, watching videos on her tablet or (non-calling) phone.  We hot-spotted her off our phones, and aside from a few spots when we hit the uninhabited woods of Maine north of Bangor, we had good coverage.  It can get tiring to hear the shows Janey likes over and over and over---the theme song from Vamperina is etched in my mind---but it's worth it to keep her happy and cheerful.  We packed lots of food she likes, and we stopped for her fast food favorites---Burger King hash browns and later some Wendy's nuggets and fries.  And of course coffee---something we all drink.

Very early start!

We got to the hotel about 3 pm, and there met up with our friends who got there shortly afterward.  I wondered how Janey would react to seeing her favorite adult friend Maryellen in a place so far from where both of us live, but she didn't seem surprised or confused.  I'd told her in advance she'd see Maryellen, of course, but I think even if I hadn't, she would have just accepted it.  Life must sometimes seem like that to her on an everyday basis---odd things happen she isn't sure of the reasons for and she has just learned that's how life is.

Janey loves hotels, which she calls "hotel houses", as a general rule, and she did very well at this one too.  They feature endless hot showers and the fun of choosing a bed from the two in the room, and usually a breakfast buffet.  They are a change of scenery that isn't too radical a change for her, I think.  Unlike a lot of people with autism, Janey is pretty good with changes, as long as she has familiar people around her and can have the comfort of her  videos and music.  

And the actual eclipse?  One thing I wondered about a lot is whether Janey would notice how strange it all was---to have night suddenly appear during the day.  I told her about it, explained it as best I could, but I don't know what she understood.  And as with seeing her friend far from home, Janey didn't seem terribly surprised by the eclipse.  She was happy out in the big field we watched it in---but I think that was because she had goldfish crackers and her videos and lots of family and friends around who seemed to her to be oddly exuberant over what I think she saw as a pretty regular afternoon.  We did have her look through eclipse glasses as the sun started to get covered, and asked her if she saw how the sun was getting covered, and she gave a mechanical "Yes" and pushed the glasses away.  

Janey and Tony during totality

For the rest of us---WOW.  If you ever have a chance to see a total solar eclipse---grab the chance.  To say the eclipse was life-changing is not overstating it.  It was truly the most amazing thing I will ever see, I think.  The boys and Tony felt the same way.  The weather was absolutely perfect---completely clear---and the corona shining around a dark sun in a suddenly dark and chilly day with a sunset that extended all around the horizon---it was something it's impossible to describe, something that affects every sense, something that makes you feel the majesty of this universe more than you are ever expecting to feel.  

Amazing

It struck me that this experience illustrates something that I've come to understand about Janey's life.  She is living a life that is parallel to ours but in some ways very different than ours.  Of course I don't know what she is thinking, but I think she lives a much more present tense life.  She didn't anticipate the eclipse as I did (in my case for nearly 50 years, from the time as a child I read there would be an eclipse visible in Maine in the far away year of 2024).  She didn't worry about the ride up.  She didn't think about how it would be dark for only 3 minutes.  I am not saying something all sentimental like "We should all learn from that!"  I am glad I can look forward to things, can appreciate how brief and amazing such moments as totality are.  I'm glad I can understand what causes an eclipse, can treasure spending it with family and friends, can look back on it with wonder.  But I can also accept Janey's way of experiencing life is all she has known, and that she doesn't feel a loss by not experiencing it as I do.

By the ride home, the rest of us were probably getting just a touch cranky, but Janey was upbeat.  By the time we hit Boston traffic, when I was wishing as I often do that I was back in Maine, Janey was the only one still in a pretty good mood.  Just before we pulled into our driveway, we all gave her a round of applause for being such an amazingly good traveler.  Thank you, Janey, for being a special part of a trip none of us will ever forget

Janey enjoying the pre-eclipse

Stress

 We've all seen the articles.  They are all over women's magazines, wellness websites, those flyers in doctor's offices.  Stress is harmful to your health.  But hey, here's some ways to reduce your stress!  I'm looking at one now, filled with gems like deep breathing, practicing yoga, taking a bath, reducing your caffeine intake, learning to say no, and, of course, practicing mindfulness.  Okay.  Yeah.  After I'm done laughing, I feel like crying, the kind of crying that comes from being completely unseen by those who are not familiar with the world of severe special needs.

Let's go over a day with Janey.  We'll start with the morning routine.  We wake her up (that is, assuming she's ever slept, which is a big if).  We determine if the bed needs a complete change, and if she needs a shower due to...you know.  We determine her mood---is she screaming and biting herself?  Or manically laughing?  All this affects how long it will take to get her dressed and ready.  Because---we have to be out there soon waiting for a school bus that might or might not show up within a range of time that is up to an hour either way.  But I'm sure a little caffeine reduction and some good old deep breathing is what the situation calls for.

Then---the "easy" part of the day.  Janey is at school.  Now, we only have to hurry and do all the things that are impossible to do while caring for her---bills, housework, shopping, and oftentimes, sleeping.  In there someplace, we need to do long term planning.  Janey is 17.  There's a lot to be done before she turns 18, and we need to get on that---NOW.  By the time we can draw a breath, the bus is heading home.  We haven't gotten in a bath, or any mindfulness---shoot!  We have gotten in a lot of mind-full-of-stress-ness, though---the worry that never quite leaves us every time Janey isn't within our sight. We love and trust her teachers and aides and therapists, but we don't know how her day is going.  Is she having a tough day?  Has someone else having a bad day of their own yelled at her?  Is she confused, scared, bored, overwhelmed?  Is she safe?  The stress of having a child who doesn't communicate much at all with us---that base level of stress, even on the easiest day, is never, ever gone.

And now, Janey is home.  We are happy to see her.  We hope she is happy to see us.  Some days, she gets off the bus with smiles.  Other days, with screams.  We check if her notebook is written in.  Did she have a tough day?  Did she sleep all day at school after a sleepless night?  Did she have a lot of "energy" (read that as manic energy, pacing and repeating phrases and laughing randomly)?  We hang on every word written, desperate for a glimpse of her life away from us.  

The afternoon and evening.  Janey, even in the best of moods, makes constant demands---"Want to go for a car ride?  Want a shower time?  Want tuna?  Want salami?  Want cheese?  Want Buzz Lightyear?" and the non-specific but highly insistent "I NEED HELP!"  Sometimes, we try the stress reduction technique of learning to say no.  Any no, even after minutes and hours and days of yesses, is met with a scream, some arm biting, stomping.  As we deep breath our heads off, Janey repeats the demand that caused the no, every minute for hours.  The things she asks for, I know, are things to relieve her own stress, stress which I am quite sure is as pervasive and severe as ours.  The warm water of the shower, the music and movement in the car, the videos repeated over and over---she needs stress relief too, and she doesn't know, isn't able to know, how that stress relief works on us---how stressful it is to be her parent, to want to do anything on earth to help her, even as we are falling apart.

Then---bedtime.  Or not.  These days, a night where Janey falls asleep at a reasonable hour and stays asleep all night happens probably 1 out of 3 nights.  The other nights---another 1 out of 3 feature short sleep, with her falling asleep easily but waking at 1 or 2 am to never go back to sleep, or her finally falling asleep at midnight or 1.  The remaining third---no sleep nights.  No sleep at all.  None.  That was last night.  And when Janey doesn't sleep, ain't nobody sleeping.  She constantly wakes us, either by asking for the same things as daytime---"Salami!  Shower!" or by screaming, or by turning on the TV or one of the devices she has, loud and endless..."It's fun to act like animals!  Fancy Nancy! Little Einsteins! Forky! Three Little Kittens!" ... the tunes that play on constant repeat, in my mind even when they are not actually being blasted.

And then it's morning, and it all starts again.

Janey is the love of our lives.  She is amazing, fascinating, beautiful.  And it is not her fault, in any way at all, that the stress of caring for her is...there is so much I want to say here and I won't. And I won't do what I am hugely prone to do, what I am sure many of you are prone to do, to minimize, to worry that speaking the truth of the stress is somehow wrong, to pretend that I'm fine.  I wouldn't do that because I know I'm not alone here, that others are living this life, and that one of the hugest stressors is feeling alone in your struggles.  You aren't.  I'm not.  And with that, I'm having another cup of coffee---today, as every day, is not the day to reduce my caffeine.

So far, not so good

School has been closed here in Boston for almost two weeks.  From what I've read, school is closed almost everywhere in the world, certainly almost everywhere in the US.

How's it going?  For us, not well.  Janey is very, very unhappy without school.  

We've wondered, during the last 2 or 3 great years, with this year up until the pandemic hit being the best of all, what was contributing the most to Janey's vastly happier mood.  Was it just her maturing?  Was it something we were doing differently at home?  Had she been in pain somehow, and now wasn't?  Or was it school, school she loved?  I'm sure it was some of all of those, but I think these weeks have shown the biggest part of it was school.  

For Janey, being social and connecting to people has always been one of her strengths.  This is especially the case with adults.  She forms strong connections to the people in her life.  She has special rituals and routines with each person she is close with, ones that are very different for each person but that she never forgets.  She lets people know strongly how important they are to her.  Being suddenly removed for all the people at school she grew so quickly to love very much is tearing her apart.  It's not that she doesn't love us at home, but honestly---what 15 year old would want to spend all their time at home with their parents?  Not Janey.

We're seeing behaviors we haven't seen in a long time.  Janey is biting her arm all the time, something that never has quite gone away but for years has been more like a gesture than an actual bite.  Now it's a bite again.  She is screaming, a lot, the very loud and anguished scream we knew so well but had heard so much less of lately.  She isn't sleeping. Last night she slept almost not at all, she didn't nap today, and at 10:30 at night she's still awake.  Her OCD has kicked into high gear.  She's obsessed with the pillows on her bed---rearranging them, asking for them and then throwing them, wanting us to lie down with her but then insisting we not have a pillow.  She tries to push her brother William out of the room every time she sees him---not that she doesn't like him, but he has become somehow something that needs to arranged also.  She is falling apart in a lot of ways.

And of course, it's nobody's fault.  There is nothing that can be done.  The schools are doing what they can remotely, friends have asked if there is anything they can do to help, we would buy or get anything that would make this easier for her, if there were anything.  There isn't.  We can't recreate school for her---the dance classes, the long bus rides, the morning meetings, the wonderful people who work with her, sing with her, have fun with her.  

There are resources being put out there for all the homebound kids all the time, but as is so often the case, they mostly don't work for someone like Janey.  She doesn't do academic work.  Online learning is not something she can access in any real way.  She has always rejected any time of virtual visual contact---I've tried any time I've been away for a day or two to Facetime her, and she hated it.  We try to follow a routine, but we run out of things to fill the routine with fast.  A big part of her routine at home has always involved things like going to the grocery store, or visiting her uncle in the nursing home near us, or going to the "ice cream store", the nearby 7-11, or other little local trips.  We can't do those safely or at all.  For a while, I was taking Janey with me each day for a walk to the post office.  But she compulsively touches everything---the walls, the lampposts, parked cars---and without literally holding down her hands, she's going to touch her face.  So we do car rides to nowhere or stay home.   

We will get through this, of course.  School will start again in time.  But what scares me is how easily all Janey's progress can dissolve.  I worry about when she turns 22, and is no longer in school.  I worry about budget cuts or administrative decisions that might change her school experience.  I worry the black hole of worries the most---about us as parents not being here on earth to care for her.

And due to some awful articles I saw and had to stop myself from reading, I worry about how society makes judgements when there are limited resources to keep people literally alive.  I worry about medical care that might not be equally available to all.  I worry about all people that are seen as less than.  I think of all the children like Janey I know through this blog, around the world, and I worry so much.  I hope you are all healthy, most of all, and finding ways to get through this. Love to all of you.

As time goes by...thoughts, concerns and moments of connection

I haven't written as much lately as I used to.  There are a lot of reasons for that, and some of them are beyond the scope of this blog.  But some of it is that Janey is steadier than she used to be.  She is more settled into routines, and mostly happier.  For the most part, that's wonderful.  I would never want to relive some of the past years, especially what I think of as the Hospital Years, or the Changing Schools Years, or the Non-Stop Screaming and Arm-Biting Years.

There are still challenges, to be sure.  One is sleep.  For weeks, Janey fell into a pattern of going to bed around 5 pm.  Nothing anyone could do would keep her up.  When someone is determined to sleep, they sleep.  Of course, the other side was that Janey would wake extremely early---often at 1 or 2 in the morning.  And she would stay awake.  When she's awake, one of us has to be at least sort of awake.  We are at the point now where we can cap-nap in the same room as her, but never fully sleep, as we need to be alert to what she's doing, and she often makes sure we are not fully asleep by suddenly thrusting a TV remote or bottle of soda or stick of cheese in our faces and making demands.  After a few weeks of that, we fall into sort of a half-life.  You never feel fully awake or fully asleep.  Knock on wood, she's back in a better cycle---bed about 7, up about 4:30 or 5, which works with her bus arriving at 6:15.

Another challenge, or concern, is as always Janey's speech.  Her speech is highly cyclical, like everything else about her.  Sometimes she talks much more than others.  But overall, her talking has settled into a fairly low point.  She says only a limited amount of things, and even the things she does say are often said in mumbles, hard to understand, or in a very rushed recitation of a phrase.  She has a great speech therapist right now, and a teacher who seems terrific, but these cycles of speech don't seem very affected or changed by anything external.  Lately, her default answer to almost all questions is something like "That one!"  We ask "What show do you want?"---"That one!"  "What do you want to eat?"  "That one!"  I think she truly thinks we can read her mind.  Or she's mentally using a choice board and pointing to what "that one" is.  Whatever it is, it's frustrating.

There was a presentation at Janey's school today about the various high school choices in Boston.  Janey's in 7th grade, so there's another year before I have to choose, but I want to stay well on top of it and do a lot of school visits.  The presentations varied widely, and I think only actually seeing the programs will answer some of the questions I have.  But I'm clarifying my vision of the kind of program I want.  I want one where the challenges are appropriate, where Janey is accepted as who she is.  I think of a video game analogy.  I don't want a program where the sole goal is leveling up.  Janey isn't going to get a high school diploma.  She isn't going to hold a non-sheltered job.  She isn't going to live on her own, or even be able to be alone at home ever.  I want a program where she can be a success by being who she is, not by others striving to make her what she isn't going to be.

It's interesting how as Janey gets older, I think a lot less about how she is disabled and a lot more about just how she IS.  If she is happy, and she makes life so Tony and I can also be happy, and she is cared for and loved, that is wonderful.  The most wonderful times of all are times of shared happiness with her.  I had a moment like that the other day.  Janey, as I've written about often, loves Christmas music.  This year, she is very taken with "O Holy Night".  Not every version, as she let us know firmly when I played through a lot of versions on Slacker Radio with her, but when she hears a version she loves...wow.  I played such a version the other night, Nat King Cole.  Janey and I lay together on her bed listening to it, and our eyes locked.  The look in her eyes---I can't even think about it without crying.  We were both completely overwhelmed by the song, and we had one of those rare moments of pure connection.  They are the moments I live for.  In some ways, Janey lives in a different world than I do, but at moments like that, we are completely together.  It's hard to explain, but I'd guess others have had such experiences with their children like Janey.

I'm thinking of all of you this Christmas season.  I'm having a hard time this year, troubles and worries that are nothing to do with Janey occupying my mind often.  I wish so often I could spend time in person with so many of you I've met throughout this journey.  What I wouldn't give for a bunch of us to sit down and talk and eat and laugh and cry....  I hope December is a happy month for you all.

Yes, no, the water---talking and not talking

One of the oddities of Janey's speech is that there rarely seems to be a time when she is using both "yes" and "no".  She'll use only "yes" for a long time, then only "no", then swing back---the idea of having both as an option seems to elude her, or seemed to.  Lately, we are hearing both, and it's wonderful.  "Yes" is still far more common than "no", but there are "no"s now and then.  Janey's teacher told me about one, realizing they are fairly rare.  He asked her to carry a communication sheet to breakfast with her, and she said no.  He was surprised and pleased, and respected the no.

It's interesting to me that what she refused was a communication aide.  It reminded me of a time when I talked to Janey about ways besides speaking she could use to communicate.  That led to one of the most striking and surprising moments ever with her.  I wrote about it here. (link)  Janey told me, clearly and firmly, "I know how to talk".  She said it twice, in a way she very rarely speaks.  That, and many other times she has refused very strongly to use AAC or iPad speech programs or anything of the like, has given me her strong opinion.  I love to know how she feels about issues, and I respect her opinions.  But I do wish I could help her better use her talking to communicate.

Here's an example.  Janey loves to take showers.  Our shower is jury-rigged in such a way that only the cold water works to change the water temperature.  You have to turn the cold water faucet in tiny increments to get the water hotter or colder.  We have it set on the hot water heater so it's never dangerously hot, but it can get fairly hot.  Janey likes the shower almost, but not quite, as hot as it goes.  She has seen from observing how I adjust the temperature.  Since she will often want a shower that's half an hour or more, I get out after washing her hair and just supervise.  While she's in there alone, she constantly tries to fix the water to be just the temperature she wants, and she constantly overfixes it.

When the water gets too hot or too cold, Janey says, every time, "Want to get out?"  And so I hold out a hand to get her out.  And she refuses.  And then I ask "Do you want me to fix the water?" and she repeats that in confirmation---"Do you want me to fix the water!"  And I do.  And then a minute---again.  And again....  The other day, I figured while I was standing around waiting for her to ask for help, I might as well try an experiment in getting her to say what she meant.  I said to her "Janey, you always ask to get out when you mean you want me to fix the water.  When you want the water fixed, can you say 'Mama, fix the water?' or something like that instead?"  Minutes later, of course, "want to get out" And so I played dumb and tried to get her out.  When she didn't get out, I pretended I didn't know what she wanted, and finally, she said "fix the water!"  And for the rest of that shower, she said it.

So---a breakthrough, right?  Wrong.  The next day, we were back to square one, asking to get out.  I reminded her, but this time, she just screamed and screamed.  I finally made her get out.  The next day, she cried before even getting in the shower, and didn't ask for the water to be changed---just stood there in water that had gotten too cold.  In the days since the first try, over the course of about maybe 20 showers, she has once said on her own "fix the water!" Now, when she asks to get out, I just say "You want me to fix the water" and do it.  When she's ready to get out, she gets out without asking.  In her eyes, problem solved.

That's a long example of a problem that comes up over and over.  It's extremely, extremely hard to get Janey to regularly use any new speech.  She KNOWS the words, she CAN say, she UNDERSTANDS them, but she doesn't use them.  She uses a few phrases for almost all purposes. Years and years and years of school speech therapy have not helped to talk more at all.  They have been, I can say pretty strongly, a complete failure in that department.

I don't know what to do about this issue.  I'd be thrilled to communicate with Janey in any way.  If she would use a speech program, or sign language, or typing, or writing, or anything, I'd move heaven and earth to work with her.  But she doesn't want to.  If I could find a kind of speech therapy that worked for her specific speech issues, I'd drive anywhere, pay anything (although our insurance would most likely cover it, IF I could find it) to make use of it.  But I've never had anyone seem to know how to help her use her verbal speech more.

So, for now, we accept what she can say. The shower talk attempt taught me something.  If I know what she means, I will go with that.  It does little good and sometimes much harm to try to force her to speak in a way that more people could understand.  It's more important for me to connect with her than to try to change her way of talking.  Still---there is the bigger world.  There's the thought of her without Tony and me, someday, the black hole, the staring at the sun, the thing we can't think about but which always is there in our minds anyway.  I hope she always finds someone to understand her, and I wish so much I could help her make that possible.

What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.

Things I can't think about...but I do anyway

If I want to sleep at night, to ever let Janey out of my sight, to not spend my days in worry beyond worry, there are certain things I just can't think about.  And most of the time, I am able to do that.  But not always.  Sometimes, those things are in the news, or something happens that stirs up the thoughts, and wham...I am thinking.  Boy, am I thinking.

If only the brain had an off switch...

You all probably have read about the policeman in Florida who shot a caregiver of an autistic man, and explained he was actually aiming for the man with autism, and missed. (link here)  There's a lot to process there, but my mind went to the many times Janey's lost it in public.  I can picture her trying to hit or bite a caregiver, or Tony or me or her brothers, and what it might look like if a law enforcement officer came across the scene at the height of it.  I think she's a little protected just by being female, because right or wrong females seem to be seen as less of a threat, but still...my thoughts are not ones that are easy to think.

My friend Michelle and I have joked a lot that we have to live forever.  And the joke is partly a way to not face the reality that we won't, and that some day, our children will not be in our care.  Both our autistic daughters have two siblings.  For those siblings, the knowledge that they will likely someday play at least some role in Janey's or Lindsey's lives---I won't speak for them, but I am quite sure that knowledge plays a role, if even subconsciously, in their life planning.  But the alternative, a group home---well, that is something I try not to think about.  I am sure there are good, even great, group homes out there.  I know there are.  But there are others that are not as good.  This article (link here) about group homes in Massachusetts was not an easy read.

Janey's current psychiatrist told Tony and me in very clear, certain tones that Janey is at extremely high risk for abuse.  I feel like throwing up every time that thought comes into my mind.  He said girls who are non-verbal have a rate of abuse that is so high that it's almost a certainty.  Well, what do you do with knowledge like that?  I have to feel glad, here, that Janey lets people know when she doesn't like what is being done.  I want her to keep that voice.  The other day, for some reason the word "tap" came up in a conversation Janey was listening to.  Immediately, she said "tap" and tapped her head.  I know that is something taught in ABA.  I know the reasons for that kind of teaching, but I'll be honest---it was a bit troubling to see.  Do we really want our kids to respond instantly when told to do something?  

I am lucky.  I feel as close to total confidence as I can feel in Janey's schools. She is safe at home.  She is loved and cared for.  I wish I could simply close out the worries, the fears, the thoughts.  But I can't.  I don't think any of us who love a child with autism can.