As Janey gets older and we get old...

 The less often I write, the harder it is to get started again!  I feel like I have to catch everyone up on everything going on, and that gets overwhelming.  So I'll put it all in a nutshell.  Things have been quite good on the Janey front---she has been happy, loving school, cheerful and not sleeping as badly as at some times in the past...until this week.  This is vacation week here, and it's been a hellish week.  It's like a throwback to hellish weeks of long ago.  Janey has been crying, screaming, not sleeping much at all, unhappy all day long.  Nothing works, nothing at all.  We have tried everything we can think of. 

It won't last.  It never does---that is the thing with Janey.  These awful times are self-limiting.  And honestly, as the years go by, they seem to happen a bit less, maybe 3 times a year.  There are brief days here and there that aren't good, but these extended rough times aren't as frequent.  

The thing is...we are older now.  I hit the big 6-0 a few months ago, and I am feeling it.  Tony is 64.  We don't bounce back as well as we once did.  We very much need good sleep and a few minutes during the day to relax.  This last stretch is feeling quite overwhelming.

I lost my mother in January.  That was tough, although not unexpected.  She had Lewy Body Dementia, and the last 5 years featured a pretty steep decline.  It hits me here and there, a wave of realizing I'll never see her again, never talk to her again.  And it has made me realize, in a vivid way, that life is short.  

Having someone like Janey to care for---it complicates this whole ageing bit.  Tony and I talked about how we want to make the next 10 years as good years as we can.  Hopefully we will live past that, but neither of us are in perfect health to start with, and the stress and chronic lack of sleep don't help.  But we will never have the freedom to do some of the things we want to do---travel together, go on last minute getaways, even go out to dinner just the two of us.  It's just not going to happen.  I always feel compelled to say something positive here---those of you who know me in person laugh at how I am about that---but this week anyway, it's feeling tougher to see the positive.

Except, of course, for our love for Janey.  She has grown into a nearly 22 year old woman who is quite something.  She still surprises us all the time with the songs she sings, her uncanny ability to repeat what we say with her own touch of parody (we call it her "demon voice", repeating something like "go to sleep!" that we have said as gently as we can back to us in a tone that would scare anyone), her beauty and her zest for life and her love of almost all types of food and her, well, just Janey-ness.  She's pretty cool.

That is why I wish we could keep her happier.  It doesn't seem fair to her, that her life is as limited as it is and she also deals with the cyclical moods.

I won't even think right now about the other big thing---the falling off the cliff 22nd birthday, the soon to be end of her school years.  I won't talk about the incredibly frustrating process here in Massachusetts of finding a placement, the people paid to do a job that don't do it (not the schools, but the state), the fear, the anger I feel more and more at a system that just doesn't work.  I won't talk about that.  Eventually, I will, but for now, I just can't.

I find myself less optimistic than I was in my younger years.  I always felt, deep inside, that things would work out.  I don't so much feel that any more.  I still feel lucky, to have a wonderful husband, caring friends, great kids.  But I feel like the world in so many ways is not equipped or willing to deal with severe special needs.  I get angrier than I ever did---at incompetence, at money opening doors than us regular people can't open, at the meanness out there.  

Still---I work to be hopeful.  I have to be hopeful.  Hopeful in the short term---that Janey will stop the crying soon, that she will sleep tonight, that we will be able to draw a breath when school starts again on Monday.  And hopeful in the long term---that we will find a wonderful day program for Janey, one that someday can transition into a place for her once Tony and I are gone.  I hope for kind people, like so many she has encountered in the schools over the years, to always be in her life.  I hope that not just for Janey, but for all her sisters and brothers in this world of severe autism.  

Never Again

 Let's imagine, for a minute, that your child had an illness.  It is a serious illness, enough so going to school has become very troublesome, so that they scream much of the day, so they don't sleep, so they are in obvious pain.  Let's imagine this illness is physical, not what we call mental.  Imagine that everyone agrees the child needs help, urgently.  What would you do?

You'd probably go to the hospital.  So let's picture a scene there.  The hospital agrees you child is very ill, and needs longer term hospitalization to deal with this illness.  However, there are very few hospitals around that treat this particular form of illness, and they are full.  There might be an opening in a day, there might an opening in a week, there might be an opening in a month.  It might be longer than that.  

Let's say the hospital says, that despite the fact they themselves can't treat the illness, your child needs to stay there until there's an opening at the specialized hospital.  You can't take them home and care for them there, even if you feel able to, because then you'll lose your place in line for the specialized care.  

You are in the ER, being told this.  There might be a room available at the hospital that can't treat your child but insists on keeping them there.  Or there might not be, in which case you first must just stay in an ER room until a regular room is available.  This might be for a few hours.  Or it might be days.

When the room, essentially a waiting room, is available, you are moved there.  And told your child can't leave that room, for any reason, until you get a bed at the specialized hospital.  You aren't going to be treated there, aside from having your child's vitals taken every four hours.  You are just going to wait.  And while you wait, there is going to be someone posted in your room, someone called a sitter, who does just that, sits there around the clock watching you and your child, to make sure they don't leave the room.

Because there are so few openings at the specialized hospital, you wait and wait and wait.  You wait there, despite the fact your child is very ill, just waiting.

When finally, finally, there is a space for your child (and the specialized hospital accepts them---decides they are the right age and sex and type of child they want, which is totally their decision and based on rules you aren't told), your child is moved, by an ambulance ride, to the specialized hospital.

When you and your child get to that hospital, you are told you have to leave them there, alone.  You can visit, but there are very strict rules about your visits, what time they can be and how long they can last.  But you breath a sign of relief.  Finally, your child is going to get some help.

Except they aren't.  The hospital houses them there until insurance will no longer pay for them to be there.  Then they tell you the stay is over.  They don't give you any advice for how to treat the illness at home.  They don't talk to your child's school about how to treat the illness.  They might give you a new medication, which might or might not help, but they don't follow up on if it does.  When you take your child home, they are no better than when the whole ordeal started.  You beg the hospital for at least some guidance.  They send you a report with generic information, information you have long ago read on the internet.  In places where your child's name is mentioned in the report, sometimes it's the right name, sometimes it's a whole different child's name, because the whole thing is cut and pasted badly.  

And your child is home.  Worse for wear, as are you.  Stunned, overwhelmed, horrified.  And you have learned one valuable lesson.  Don't take your child to the hospital looking for help with this illness. Ever, ever again.  

If you haven't figured it out, you are probably saying "That would never happen!  Our society would never treat a sick child that way".  But you probably have figured out this story is Janey's and our story, and the illness is not a physical one, but a mental one, a flare up of symptoms related to her autism. We lived this story.  You can read about it starting with this entry ( here's the link ) There are a long series of them, giving pretty much every detail of the ordeal when Janey was 10, her six day stay as a "boarder" at Children's Hospital (starting with a day in the ER that stands out in my mind as the most hellish day of my life), and then her 18 day useless stay at a psychiatric hospital in Rhode Island.

I am thinking of all this because Janey is having quite a spike in her behaviors the last few weeks.  At home, it's been tough but not critically tough.  She's been screaming a lot, but not all the time, she's been sleeping quite badly, but there have been times she slept even worse.  But at school, she's been screaming all day.  She hasn't been like that since starting high school, and understandably, her wonderful teachers and team there are concerned and upset.  Her teacher called yesterday to talk to me about it, and one of the ideas they've had is that she might need to be hospitalized in a psychiatric hospital to adjust her medication.  In an ideal world, this would be a very reasonable idea.  In our real world---well, let's just says the very idea of it sent me into a wave of post-traumatic stress that was...bad.  

In the seven years since that awful day we went to Children's when Janey was in crisis, things have gotten worse and worse, by all reports, in terms of how "easy" it is to get a child mental health help in a psychiatric hospital.  COVID, especially, has lead to an increase in need and decrease in beds.  I've read so many horror stories of children being "boarded", the term for being held at a general hospital waiting for a psychiatric hospital, for long, long periods---sometimes many months. I will not ever take Janey to an ER for psychiatric help.  It will never happen.  

I would consider a direct admission to a psychiatric hospital for children if it were not the one she went to before.  I know there must be better ones.  We are told there is one in New Hampshire.  We were told about that one back seven years ago---told it was one of only 2 in our area, which is a very big area, that could deal with children with severe psychiatric needs that also had severe developmental delays.  We wound up at the other one.  But from everything I understand, children are basically never admitted directly to such hospitals (or I won't say never, as I've learned over the years that if you know the exactly right people and have the exactly right means, things can happen for you, but we don't know those people or have those means).  

It's been striking me, thinking about this all last night as I didn't sleep (and Janey didn't sleep, and she is home today, because school when she's in this state really isn't doing anyone, mostly her, any good), that the whole deal feels almost like a punishment.  You have a child who needs help with the symptoms of mental illness?  Well, we're going to show you just how we feel about that.  We're going to put you and your child through hell for wanting that help.  We are going to make any help out there extremely hard to get.  We are going to show you that they have the "bad" kind of illness, not the "good" kind of illness that hospitals are really meant to treat.  We're going to teach you to just shut up and bear it all, even if what you are bearing is seeing your child in anguish.  I'm sure no-one is consciously doing this, but it's happening, anyway.  Society is not putting its resources into helping those with severe mental illness.  

And so---what do we do?  This is long enough for now, but next time I'm going to write about my daydreams of a system that would actually help Janey and all the kids like Janey out there.  Until then, we'll go on as we have gone on.  We love our Janey more than words can say, and we will give her our best for the rest of our lives.  That we can do, but the incredible person that is our sweet Jane deserves more.

All the tough decisions---autism life in a COVID world

As the months go by and we are still living in this endless COVID bad dream, I suspect all of us living lives affected by autism are starting to feel the strain increase.  It's not at all easy for anyone, but for kids like Janey, and families like ours and so many of yours, it's a special kind of tough.

Starting with the new year, it seemed, Janey got more challenging.  We all did.  It's been a long, long haul, and it's winter, and the cases were increasing, and we all had been stuck together as a family for far longer than is mentally healthy.  The biggest issue was sleep.  Janey's sleep started a pattern of one night okay, one night with either a very late going to sleep time or a very early waking up time, and then one night of absolutely no sleep.  And although we did our bests to catnap while she was awake, or to sleep well on the nights she did, that kind of sleep cycle...wow.  We were snapping at each other, constantly tense, really not doing well.  

Janey, in trying to cope, I think, was developing some quite repetitive routines.  One was watching Toy Story 4, and sometimes Toy Story 2, over and over and over.  The other shows and movies she used to like weren't being watched at all.  And not even all of the two Toy Stories were, just certain scenes, repeated time after time.  And while watching them, Janey would laugh, that laugh I think you all know, an insane sounding loud almost humorless laugh, a fake kind of high decibel laugh.  The nights she stayed awake all night would feature that laugh off and on for hours up on hours.

We kept trying, as we have been, to do school at home.  We do the morning meeting, at 8, for which Janey showed varying levels of engagement, and then video lessons such as books with a theme for the week or lessons like a great one her teachers have developed about body awareness and pain.  When we can catch her in the right mood, she'll listen with interest and answer questions, but other times, she simply screams at the top of her lungs at the very mention of the classes.  We resorted to making the lessons a requirement before car rides or other fun times.  That's not how I want school to be for her, some kind of chore.  And that's never how it has been.  None of this is the fault of her teachers, who are doing a hero's job of it all in the midst of impossible challenges.  It's that remote learning is not how Janey learns, and I don't think it ever will be.

With all this, we decided after huge family debate to request that Janey go back to school, which supposedly was available for kids of her level of disability.  We had turned down what was called the hybrid model of learning before, where she would have been able to go to school 4 days a week.  I thought this was a reversible decision, and that by requesting she switch out of remote, she'd be quickly able to return to school.  Well, I should have known better, as in one of the hugely contrasts that exist, the difference between the fantastic teachers in Boston and the (I won't use some of the words I'd like to use here) middle and upper level central administration of Boston, the admin people showed their colors again, and it seemed somehow either impossible or incredibly complicated to switch her model.  Meanwhile, somehow there was supposed to be a switch for most special needs kids to in person on February 1st, but in one of the many conflicting and complicated emails I got, we were told since Janey was in the highest needs level and we had before requested remote learning for her, now that those with less severe needs were going to be able to go back, our previous decision to be remote had to stand, unless we did some complicated other form and (presumably) prayed it worked.  If you are confused, so am I.

However, Janey's teacher and I had the idea that perhaps Janey could go to school for one day, or one day a week, for state testing she had to have.  Even just one day was such a thrill for all of us to think of.  So a week ago Thursday, Janey went to school for a day.  She had a wonderful day.  We had a wonderful day at home.  The effects of that one day, even, last for days and days---better sleep, better toilet use, better moods, and Tony and I, after 10 full months of absolutely zero respite, had about 4 hours to ourselves between driving her in and picking her up.

Part of the day at school was a COVID test.  Janey wasn't excited about the prospect, and resisted at first, but her teacher told her that after the nurse "tickled her nose", she could have a lot of salami.  Brilliant!  She gave Janey a minute, asked her if she was ready, Janey said yes, and the test was taken successfully.

That first week's test was negative. We took Janey to school again last Thursday, so happily.  I especially needed a break.  Midweek I had developed diverticulitis for the third time in three years, with a fever and lots of pain, and a remote appointment and antibiotics and warnings of what signs to go to the ER immediately if I got.  Janey was tested again that day.

Saturday morning Janey's teacher called us to say that the pooled test, where Janey and one other child's COVID tests were combined together and tested, were positive.  Either Janey had COVID, or the other child did, or both of them did.  The school nurse called me a few minutes later (her teacher called me first to tell me in person, which I so much appreciated)  She went over the next steps, which was to get Janey her own COVID test.  

We are getting Janey's test today.  And I'll just note here, when mayors and governors and so on urge testing, well, could they make it a little damn easier to get a test, even in a situation like this where there is more than just an exposure, where there is a 50% chance Janey has the virus?  Can they make it so you don't have to call around for hours and EXPLAIN to the nurse you finally talk to what pooled testing even is, and hear her say "I've never heard of that! That's stupid!  I don't understand why they would do that!" and then act like saying Janey could get a test is some kind of huge favor, and then asking me "Will she even cooperate with the test?"  

Janey has a few mild symptoms which might or might not be significant.  A few nights ago she was coughing a bit, and she had some diarrhea, which is rare for her.  But yesterday and today she seems perfectly healthy and happy.  And thankfully, the rest of us don't show any signs so far.  But still, of course, we have to quarantine, and in fact, the whole high school is going to have to go fully remote (although only about 20 kids weren't remote)  So, for now, our plans of having Janey go to school in person again are at the very least on hold for a while.

I don't have a strong conclusion here.  Were we wrong to send Janey in for those two days?  My older son strongly, strongly feels we were, and maybe he's right.  But as I told him, he hadn't been up night after night with Janey.  He wasn't the one responsible for keeping her together day after week after month, or for trying to get her to access an education in a way she didn't want to and couldn't seem to, she wasn't the one without one second of respite from a very high needs child for literally almost a year.  We want Janey to learn, to be with friends, to have fun, to get the benefits of the wonderful teachers and aides and therapists that are there for her.  But of course we also want to be well.  And you can't really be mad at a virus.  It's doing what all of us are doing---trying to stay alive and go on.  

I'll try to keep this blog updated on Janey's test results.  I hope you all are hanging in there.  Please know you aren't alone during these long months.  There's a lot of us out there living this life.  Whatever decisions you make about schooling, know that you are doing the best you can in your situation.  And join me in hoping that a year from now, this will be part of history.  Please.

"Listen to my mouth!"

Janey overall was having a fantastic day yesterday. She was cheerful and upbeat and fun, loving listening to Christmas music with me and having a car ride with Daddy after a day too snowy for a ride the day before. We were enjoying her company so much. Then, as happens, something changed. She started crying, screaming, freaking out over everything. We had no idea what was going on. I snuggled with her on her bed and tried talking about it, asking the same old questions I'm sure she's sick of---"What's wrong? Why are you sad? Does something hurt? How can I help?" She didn't answer. William came in the room and I asked again what was wrong, and somehow the combination of him being there and my asking seemed to bother her a lot, and she hit me hard. I stayed calm, told her that I didn't like being hit, told her I wasn't going to stay snuggling with someone who was hitting me, got up and walked away. She screamed and screamed and screamed.

 After a little while, when I'd gotten her to say she was sorry (with much prompting, and who knows why I ever bother, because I don't think she means it, but I need to have her say it), I went back to snuggling her. She then looked at me intently, stared in my eyes with a look that was unusual for her, and said, twice in a row "Listen to my mouth!" I don't know what it meant. I really don't. I don't think it meant to listen to what she was saying. Maybe it did. But she usually doesn't use language like that, in a slightly indirect way. And she wasn't saying anything about why she was upset. But it meant something. She took the effort to say it, and you could see it was an effort. I stayed up a long time in the night, trying to figure it out. It finally came to me that it might be related to what doctors say "I'm going to listen to your lungs now. I'm going to listen to your heart" I don't think she could pull up the words "lung" or "heart", and she might have been saying something in her mouth hurt and she wanted e to see that, or that she just felt sick and wanted help from a doctor. But she doesn't seem sick, doesn't have a fever, doesn't have low oxygen. In this COVID times, taking her to the doctor when she doens't seem sick is not really a good balance of safety and health. 

 The whole thing brought out so many issues. Why does she get upset out of the blue? Why is it so hard for her to tell us what is wrong? Why does she hit once in a while? What do mysterious phrases she says to us mean?

 The hitting seems like her way to say she's really, really seriously not liking something. She doesn't do it often at all now, and when she does, it doesn't have the feel of something spontaneous. It feels like a planned thing, at least planned a few seconds in advance. The last time she really hit me was when we were trying hard to do Zoom classes, and I told her it was time for one. I think last night she was telling me she really didn't like my endless questions. Of course, hitting is not at all the way I want her to communicate, and I need her to know that, but I also need to listen to what issues are upsetting enough for her that she feels she has to hit. 

 The "listen to my mouth"---phrases like that are about as frequent as hitting, not very frequent at all. You can tell she thinks about them before saying them. The way she looked at me was very striking. I could tell she really wanted me to pay attention. And it makes me feel awful that I wasn't able to quite get her message.

 It's frustrating so often, figuring out Janey's needs. I don't want her to be unhappy, but of course, like all of us, sometimes she's going to be unhappy. But it's so hard not knowing why she's unhappy. Was she just sick of being around me? Did she think about something upsetting? Did something hurt? Was it just too long a day, and she was tired? It's hard dealing with this, but of course I'm sure it's a million times harder for Janey, being so upset but so unable to explain why, doing her best to let me know in the way she can but not having me get it. Janey, I will try to listen to your mouth, and your heart, and your mind, and all of us. I am trying hard.

Frustration with the schools (not the teachers!)

 Over the years, I've been a big cheerleader for the Boston Public Schools.  I am a fan of public schools in general, and I've always tried to let people know it's very possible to get a very good education in Boston without feeling like you have to send your child to private school or you have to move out of the city.  For those of you not in Boston or near it, the Boston schools don't have the greatest reputation.  I've felt for many years that poor reputation is not justified.  My three children, all very different from each other, have been for the most part well served in Boston.  

My feelings haven't changed when it comes to the teachers, or the therapists, or the paraprofessionals, or the principals.  I can truly say in all my years, which add up to 23 years now, of having my children educated in Boston, I've only encountered two or three teachers, out of literally hundreds, that I would not happily have teach my child again.  Indeed, I've had far more than my fair share of absolutely amazing teachers, of therapists that care deeply, of paraprofessionals that I would trust with my children's lives without a second thought, of principals that took a personal interest in my kids.  

But the school system in general?  The upper management, the central office, the bureaucracy?  Well, I'm not too happy with them.

Nobody can be blamed for COVID-19 existing.  It's a virus.  You can't be angry at a virus.  But I am angry at how the whole crisis has been handled in Boston, quite angry really.

I've talked through Facebook and by phone to many, many other parents in other parts of the US and world, and overall, it seems like most school districts are finding a way to educate kids like Janey.  At the very least, most districts seem to have used the summer to make plans, to find a way to  bring the kids that just don't learn well at home into the schools as safely as possible.  Some parents have chosen to keep their kids home anyway, and that is certainly understandable.

Technically, we were given a choice with Janey---remote learning or a hybrid method, 2 days a week at school.  But after talking to her teacher and hearing what those two days a week would be like...wow.  They would be in one room, with masks on, never leaving the room, teachers not allowed to touch the kids at all, much of the teaching taking place by Zoom meeting even in the room, as teachers would not be circulating. That isn't a classroom model that would work in any way for Janey, or for most kids with autism.  So we chose home education.  Janey's amazing teacher understood that Zoom meetings don't work for her, and she is going to provide us with weekly materials (which she had to do a funding drive to get money for---no thanks to Boston there) to teach Janey with.  

Janey's room at school has no opening windows, none at all.  She rides a bus for an hour each way to school and back.  She will wear a mask for short times, but I'm quite sure she wouldn't leave one on all day.  She lives for walking around the school, for field trips and swimming and dance.  It would be both unsafe and deeply unsatisfying for Janey to go to school as it has been set up.

I attended a big Zoom meeting for Boston parents of special needs kids.  I won't go into it in detail, but it was awful.  A politician was allowed to grandstand for a long time, an ABA specialist took up a long period of time during a meeting meant for PARENTS to ask questions (she had good ideas, but at least 50 parents had questions that there was no time to answer during the too short meeting), and most disturbing to me, a school official outright lied.  He was asked (several times) if teachers were going to be given adequate PPE (personal protective equipment, like masks, shields, etc.)   He said emphatically "Yes!  Absolutely!"  Well, as of last week, I have been told that such equipment is not only not being given to teachers, it hasn't even been ordered.

Even if we had chosen to send Janey to school, school isn't starting in person until October 1st, or at all, even remotely, for another two weeks.  I don't see any other district anyway that isn't even having any school this September, basically.  The schools had all summer to prepare.  This didn't all come out of no-where.  But from what I can see, infighting and attempting to please every politically powerful faction took up the time that should have been spent on one big goal---finding a way to safely educate the kids of Boston.

I know that the powers that be would argue they just can't find a way to safely educate Janey and her peers.  But I wonder---why, elsewhere around the country and around the world, are so many other kids like her back in classrooms already, safely, with teachers that have the equipment they need to be safe, with classrooms that are ventilated, with few enough kids in a room for it to be safe, without a mask requirement for children whose special needs just make it impossible for them to understand why they need to keep a mask on?  

Boston school buildings are underutilized.  Janey's high school has a population far, far smaller than the school was built to hold.  All the time, attempts are made to close some of Boston's 125 school buildings.  Surely, somewhere in the city, there are enough classrooms for kids like Janey, the highest need students, to safely attend school, and surely, there are enough teachers that, if given the proper tools, would feel safe teaching the classes.  I don't want any teacher that doesn't feel safe or supported to teach.  Many teachers have small children, or medical conditions, or the like.  But if only teachers who felt safe teaching were to teach the high needs kids, as is happening what seems like virtually everywhere else, and if Boston could be flexible and open classrooms in buildings that have good air circulation and opening windows, even if that required Janey and others to temporarily go to a different school---well, you would really think a city like Boston could do that.  And you think they would be shamed by seeing that everyplace else pretty much in the world is finding a way to do what they can't seem to do.

We're fine, ourselves personally.  Janey is 16.  Although it's not what we want, truthfully she could stop going to school now and it wouldn't be a tragedy.  I was prepared to have her drop out if the schools had been rigid about Zoom meetings for her schooling.  But there are so many young kids with autism in Boston who desperately need schools.  And although we are managing, Janey is regressing in a lot of ways.  Her toilet training has been, well, set far, far back.  She is talking less much of the time, and lately, especially after seeing her teachers outside in a socially distanced meeting---which was great---she seems to be upset she's not in school.  She can't express that directly, but it's fall.  She knows fall, and she knows that is when you go to school. 

One of the things that was said at that infuriating Zoom meeting for parents, when a parent poured out her heart about how hard this all has been, and how she didn't feel equipped to teach her young child with autism, was that there are many social service agencies in Boston designed to help the special needs community, and "we are going to work with them to get services and help for kids who need it" (not the exact words, but along those lines)  I think of all of this, that makes me almost the angriest.  You are GOING to?  Why hasn't that been happening right along?  Why are there untold numbers of agencies that I know have a mission and funding to help kids like Janey, and that are I am sure are well-meaning, but that don't work with the schools, or each other, that don't ask parents what we really need, that hold endless workshops and support groups and make up nice fliers but don't provide ANY respite, ANY after school programs, ANY direct help, except maybe to a small number of people that know exactly the right way to ask for it and have the means and personality and connections to access the help?  Why can't help be OFFERED to those who truly need it?

I'm angry.  I'm angry that the overpaid, overstaffed, underworked bureaucracy of the Boston Public Schools is failing the children of Boston, and the teachers of Boston, and the everyday citizens of Boston.  I don't get angry easily, Boston.  It took me 23 years to get this angry.  But I'm angry.

"Frustrated, Angry, Bored"

Janey has had a tough week.  After almost two months handling the quarentine like a champ, I think she's had enough.  She's been screaming and acting out much of the day, every day, staying up most of the night and sleeping during the days, tossing things around---just not happy.  Last night she had been yelling for hours. Out of desperation, I turned to her iPad's talking programs.  Using the one program she seems to like, Proloquo2Go, I went to the feelings page and asked her to please tell me what she was feeling.  Without hesitation, she picked "hate".  And pushed it over and over and over.  Fair enough.  Then I went to the body parts page to ask her if anything hurt.  She picked "feet", which is something she often picks.  I asked her if she needed a foot rub and she said yes, so we did that, and then she went to the program and picked "legs" and "arms", so I gave her a leg and arm rub too.  Then she exited the program and told me to go away.  The rest of the night was far better---she slept well and didn't scream at all.

So...why don't we use the "talker", as we call it, more?  Because Janey won't.  We've tried and tried.  I've read whatever I could on using it.  I've tried modeling, tried having it open near her as much as we can, tried programming words she might want into it, tried all I can think of.  Most of the time, she strongly rejects it.  She's several times used her limited speech to say "I CAN TALK" when I try to get her to use it, when I've said how it can help her talk.  I don't know why she doesn't like it more.  But I have respected her wishes, partly because trying to force her to do anything is a losing game.  So for quite a while, we haven't even tried it much.

I realized last night that part of why I don't try it more is that I was a little obsessed with using it "right".  I wanted to have her learn to use it for sentences, to move between screens, to try new words with it.  But the times it worked best was when I first went to a screen with a theme, like I did last night, feelings or body parts, or foods or colors or things like that.  She readily chooses when I do that.  I think she can read the words some, and uses them more than the pictures, but I have no way to prove that.  But I am going to try to more often just open a screen for her and let her pick.

This morning, I pulled up the feelings screen again.  Instantly, Janey picked "Frustrated, Angry, Bored" in rapid succession.  Well, that about says it all about life being stuck at home.  I told her I felt the same way, and I wish there was more we could do to help.  The biggest problem right now is masks.  Janey will not wear a mask, and it's the law here in Massachusetts that masks must be worn in public.  There is an exception for people with special needs, and I know we could use that, but the other part of it is that we believe in the masks, and are very scared of getting sick.  Aside from the disaster that Janey getting COVID-19 would be, if she gave it to Tony or me, we could get very, very sick.  So, while the virus is still badly raging in this area, we are stuck.  We can go for car rides to nowhere or play in the driveway, but that's about it.  And who wouldn't be frustrated, angry and bored----especially if you were 15?

This whole virus life is hard on everyone, but especially hard on kids like Janey.  She doesn't have friends to text or FaceTime with.  She doesn't read books.  She can't take walks even right now...if she would wear a mask, there's still the problem of her touching everything in sight.  She is stuck in an endless dull day.  And we are trying, but it's hard to break up the boredom.  I'm surprised it took her as long as it did to get angry.

As a tribute to Mad Magazine, Snappy Answers to Stupid (or at least uninformed) Questions!

"Does she go to school?"

This one can still surprise me a lot, especially if it's asked by anyone under 70 or so.  Of course she goes to school.  Since 1975, all children go to school.  Are there still people who think that kids like Janey just have to stay home?


"But she'll live independently someday, won't she?"

Well, no.  She won't.  Unless something very, very unexpected happens between now and adulthood, Janey will never live independently.  And honestly, that's not something I dwell on or get upset about much.  She'll live with us.   She is not going to have the skills to safely live on her own, not at all. It's not a goal of ours.


"Did you take Janey with you on your vacation/weekend getaway/day trip?"

Yes.  Yes, we did.  Unless we do things within the hours Janey is at school, she is always with us.  I get this one more than I'd ever think I would.  There isn't anyone that watches Janey except our family and school.  No-one.  And that doesn't suddenly change because we want to go on vacation.  There isn't some backup corps of people that aren't usually there but will jump in if we are going away.



"But you must get a lot of help/services/respite/money because of her disability?"

No.  We don't.  I am not exactly sure where people get this idea.  Maybe in the past, there was more money out there, or maybe they are thinking of very specific cases, but basically, there is nothing now.  Someday, when Janey is an adult, she might get Social Security.  Some younger kids, if their famlies want it, get a lot of ABA therapy.  But there is no money for respite.  We do have a state Medicare type backup insurance for Janey, that supplements our regular insurance.  Once, for some reason, the state gave us $500, randomly, and we used it to buy Janey's first iPad.  But other than that, outside of school, no.

"She isn't, you know, SLOW?  Kids with autism are very smart, right?"

That's a tricky one.  I do think Janey is very smart, in some ways.  But in traditional ways, or in the ways of autistic people you sometimes see on TV, who are quirky but brilliant, no, she isn't.  She doesn't read, or write, or speak in complete sentences.  She doesn't have special skills, a savant type hidden ability.  She isn't going to college.  She isn't going to get a high school diploma. And that's no big deal.  She's herself.

"Have you tried (fill in the blank here with things like special diets or specific therapies)?"

 The answer is one of two things---yes, we've tried it and it didn't work, or no, we haven't tried it, and we aren't interested in trying it.  You are not going to ask that and get someone saying "Gee, we've never tried that, but now that you mention it, we will!"

"What a tragedy for you!  How do you go on? How do you live with a burden like that?"

The few times I've heard this, my breath was almost taken away with anger.  Janey is not a tragedy. She is our child.  A tragedy is losing a child, having a child die.  I know a few families who  have lost a child, and I can't even think about it without crying every time.  We have Janey.  No child's life is a tragedy.  No child is a burden.  I'm not minimizing how difficult raising a child can be, any child. But there is a difference between something being difficult and something being a tragedy or a burden.

"How do you do it?  I could never do what you do!"

Don't say this.  Don't say it like it's a compliment to us.  Don't say it at all.  You COULD do it.  You WOULD do it, if Janey was your child. You would do it to the very best of your abilities.  Saying that  you couldn't is saying we as parents are somehow specially chosen.  We aren't.  And while we are doing the best we can, making us seem like some kind of superheroes serves to give society a cop-out. Why give help, respite, services to super-parents?  They are amazing!  They are doing something other people couldn't do.  We will admire them, praise them, but we don't need to HELP parents like that!


And here's a few questions I'd like to be asked more often...

"What is Janey like?  Tell me about her!"
"What can I do to help you?"
"What services would be most helpful for the city/state/country to provide?"
"Want some coffee while we laugh about everything and anything, including but not exclusively life with a child with autism?"

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

Fill-In-The-Blanks talking

We've always done a bit of fill in the blanks talking with Janey.  It goes something like "I am crying because...." and hoping she'll fill in the reason, or maybe "The food I want is...."  We've had mixed results over the years---generally, honestly, not that great results.  But once in a while, it works.  However, lately, for whatever reason, it suddenly seems to be working very well, and it feels like a little bit of a communication breakthrough. 

Here's a recent conversation with Janey, with her words in italics.  The background is that she wanted a shower just before I knew Tony was about to come home and give her a car ride, something she'd want even more. 

"A little bit ago, Janey wanted to take a...shower.  But Mama said...yes"

That's something we see a lot in the fill in the blank talking.  Janey gives the answer she WISHES would have been the answer.

"Janey wishes that Mama had said yes.  But really, Mama said...NO!"

My no responses are always told by her as being extremely loud and mean sounding!

"When Mama said no, that made Janey very....angry.  Janey was so angry that she...hit Mama"

Another example there of the answer being what, I think, Janey WANTED to do!

"No, Janey didn't hit Mama, and Mama was very proud Janey remembered not to hit.  Instead, Janey....(here I opened up my mouth very wide to give her a hint)...screamed....very, very...loudly!"

"And then Mama said if Janey could calm down a little, when Daddy got home in a minute, he would take Janey for a...car ride.  That made Janey feel....happy.  And Mama was happy because Janey was being such a good girl"

There she surprised me a bit.  I was going for "Janey calmed down".  I try not to use terms like "good girl" too much, but I guess I must, as that's what she said!

Today is a snow day.  Tony is home as well as Janey.  First thing in the morning, Janey was ready once again for a car ride.  We did a little fill in the black talking after we told her no to that.

"Janey wanted to go for a car ride, but Daddy said...YES!"  

Again, the answer she wished for!

"No, actually Daddy said no.  He said no because outside there is lots of....snow"

We were surprised by that.  We had mentioned the snow, but we weren't sure Janey had made the connection.  It was so good to know she had, that she understood there was a reason for no car ride. 

"Yes, there's lots of snow outside.  And if we drive in the snow, the car might...go smasha-la-rasha!"

It's possible I've used the term "smasha-la-rasha"....

A third great round.  Janey was at loose ends a bit ago, not happy at all. 

"You know, Janey, today things seems a little different, and that can be scary.  Things seem different today because there is no...school"

That was a great one.  I hadn't been talking about how this was a snow day---I just wanted to see if she realized that it was a day that would usually be a school day and it wasn't.  I've known for a while that Janey has a very good idea of what each day is supposed to bring, and she really doesn't like days off in the middle of the week, but this was the first time I've been able to kind of prove it to myself.

After we have a conversation like those above, I've noticed that Janey gets very, very happy.  After that first conversation about the shower and car ride, Janey gave me a huge hug, and then that look, the look I love so much, the connected and contented look.  It's a look I only get once in a while, a look that is hard to explain but that I think a lot of you out there know.  It's the look of minds meeting, of a connection without barriers.

It's wonderful to hear what Janey has to say.  And the fill in the blank method seems to work better than almost anything we've tried to really get to hear her own opinions.  I think it's because her main speech problem has always been word retrieval.  She knows so much, but getting it out is so hard for her, as is forming sentences.  If we take away a lot of the variables and work, if we make it so all she has to retrieve is one word or phrase, not a whole sentence, it seems to free her up to say what she wants to say.  And I love, love, LOVE knowing what she wants to say.

Jealousy, Anger, Boredom, Fear....

In my own mind, there is a list of acceptable emotions to have as a parent, especially the parent of a child with autism. Happiness, pride, love, determination, hope, curiosity, amusement, empathy---you'll notice the list is full of positive or encouraging feelings. But there's also a list of feelings I classify as, if not forbidden, at least not to be spoken of much. I'm going to try hard here to be honest about some of those.


Jealousy


In my ideal version of myself, I'm never jealous of other parents or kids. I delight in what Janey can do, and never think about what other kids are doing. In reality, sometimes I am so jealous it's hard to describe. I see other girls her age on Facebook, doing all the regular 13 year old girl things, and I can barely stand it. I look at other mother/daughter relationships, with all their ups and down, and I long for that kind of relationship in my own life. Every child with autism that functions at a higher level than Janey can make the green-eyed monster come out in me. The jealousy isn't all the time, but when it shows up, it's powerful.


Anger


We got a new couch recently. For the few of you that have seen our furniture, you know it was highly, highly overdue. It's nothing fancy, but I had this dream of it looking fairly good for maybe, say, a month. This Sunday, as Tony drove Freddy back to school and I stayed with Janey, against my better judgement, I went to the bathroom while Janey was watching TV. In the few minutes that took, Janey got a bottle of salad dressing out of the refrigarator and, for reasons known only to herself, poured the whole bottle on the new couch. I don't get angry that easily, but I made an exception there. I was furious. Life with Janey presents a lot of moments like the Couch Incident. In some ways, it makes no sense to be angry at Janey. It does no good, I don't think she usually gets why I'm angry, it doesn't do anything but get us both worked up. But having a child who does inexplicable and destructive things on a fairly regular basis---yes, I get angry sometimes.


Boredom


For some reason, this feels like one of the most taboo emotions to have when dealing with your autistic child. I feel like I'm supposed to consider every moment an exciting learning opportunity, a chance to teach and help. However, the truth is, sometimes life with Janey can get boring. Her favorite thing to do with me is what she calls “Snuggle on Mama's bed”. In reality, it's her bed, and it's not usually really snuggling, it's lying there next to each other. My role in this game is to sing little songs and recite nursery rhymes and otherwise carry on a monologue. Sometimes this time feels wonderful, a time of connection between us. Other times, though, I am just plain bored of it. Janey doesn't want me to sing or recite or talk about anything new. She is open to new music in the car, but not when we are snuggling and I'm singing. She doesn't want to talk herself, or be asked questions, or listen to any books except a few nursery rhyme ones and occasionally “Go Dog Go”. I'd say we spend a couple hours a day in this mode. And it gets boring. Very, very boring, at times.


Fear


Recently, there's been attention in the news to the hideously high rate of abuse of those with special needs. I can't read through these articles, but I've read enough. When I think about that kind of thing...well, often I just can't. The fear would overwhelm me. And in the background, there is a fear that never ever goes away, the fear of what will happen to Janey when Tony and I are gone. When I think about her in any kind of situation where she is scared or confused or being hurt or not cared for---the fear is horrible. Add to that the fear that was planted, planted deep, when she lived with a burst appendix for three days without us knowing, the fear of the harm that can come from her lack of ability to communicate well...the fear is always, always there.



There you have it---the emotions that often get left out of what is openly discussed when talking about this special needs parenting gig. It's not an easy job. It's the job I'm committed to for life, and my love of Janey is my pay. But like any job, no matter how well paid, there are days you just want to gripe, to speak openly about the sometimes tough work conditions with others on the work site. Thanks for listening.

Writing Raw

I don't normally write when I am feeling raw, when I am not in a calm writing state.  But today I will. I won't get into all the reasons, not to be mysterious but just because it's not always the forum here for that.  But I am feeling discouraged this week, very discouraged.

It's not really Janey's behavior that is discouraging me, but with my other worries, it's the constant grinding feeling of knowing there just doesn't seem to be a place in the world for kids like Janey.

I put an article from the New York Times on my Facebook page---here's a link to it--Link  It's just one thing in a long list of endless things, but it upset me.  It talked about a new program in schools for kids with autism, a program that in many ways is like the school Janey attended for the first 5 years of schooling, an inclusion program.  I liked what it had to say, until I read the line that said "To get into the program, children must be deemed capable of doing grade-level work"  Yeah.  Okay.  Like so many other programs supposedly for special needs or autism, kids like Janey are specifically excluded.  This is something I find over and over and over---camps and lessons and special events and on and on and on that simply don't want to deal with a child like Janey (or if I am being kinder, would like to deal with her but just don't have the resources)

And I will get really cranky here and say I'm sick of hearing that, basically, intellectual disability doesn't exist in autism.  It's not something I hear directly, but something that is often implied.  I am the first person to say that I know Janey has many, many strengths.  I know she understands more than she lets on.  I value her extremely much, AS SHE IS.  It is not necessary to make her something she ISN'T to value her.  She is a child that has a very significant intellectual disability.  It's fine if people choose to not accept that.  But they can't choose to not accept that but then still think they are helping all kids with autism.

What if I said "Janey IS capable of doing grade-level work!" and tried to put her in a class like the ones in the article?  Because, who knows?  Maybe she somehow is!  I can just imagine how that would go over.  It would not.  The truth is, what someone might be capable of is not, in practical daily life, that important.  She could not function in a class like the ones described.  I am not just guessing this.  She used to be in a school with classes like the ones described, or actually, a school far MORE inclusive than the ones described, classes that did welcome kids with intellectual disabilities, but were not able to deal with the full range of autism's challenges.  I wish she still could be at that school..  But she can't, and the school was right to admit she couldn't.

And there are so, so many other things like the inclusion classes the article talks about.  If you ever want a good laugh, do a search for camps in your areas that say they accept kids with special needs or even more specifically, kids with autism.  And then look at the details.  There is almost always a rule saying something like "child must be able to function in a 5 to 1 child to adult ratio", "Child must be able to safely follow routines"  or even "Child must be fully toilet trained"  I'm overstating a bit here, but if camp fliers were honest, they might say something like "Children with special needs accepted as long as they don't have any needs which are beyond those of other children"  Or in other words, special needs children are fine if they don't have special needs.

To me, whenever I feel that the media isn't presenting a full picture of children with autism, when voices of parents like me are silenced because we are "speaking for our children and not letting speak for themselves", because we are "portraying autism in a negative light"---well, to me that feels like the truth of Janey, the truth of children like her is something that is being hidden, something that is somehow too horrible to talk about.  And it isn't.  Janey is an amazing person.  Almost everyone who has met her is drawn to her.  She is amazing AS SHE IS.  She is amazing not because she might have mysterious hidden abilities, she is amazing WITH intellectual disabilities.  And WITH occasional self-injurious behaviors.  And WITH incomplete toileting skills.  And WITH aggressive behaviors when she is very upset.  And WITH very limited speech.  She is amazing as she actually is.  And I will fight until my last breath for children like her to be included, truly included.

All Are Welcome---except, of course, when they aren't

As I made a depressing round of calls this week to try to find a source of outside of school speech therapy for Janey, as I once again looked at summer camp opportunities and realized that the Extended School Year program at the public schools was really her only option, as I thought about how restless Janey is on the weekends, I did some thought exercises.  How would we feel, in today's society, to think that activities, programs, lessons, camps, enrichment opportunities, all those things that are "open to everyone" are in fact closed to one small group of people?  How would we feel knowing that we exclude with polite speech and "of course you understand" and "we aren't equipped to deal with that sort of needs" and "we staff for children who can be in a 4 child to one adult ratio" and "we generally deal with younger children with more potential to someday return to regular classrooms (an actual quote)" and "we'd be happy to help you if you could hire a one on one aide to accompany your child" and many, many other such ways to say NO---we don't include your child?  If this were done on the basis of sex or religion or race or nationality, we'd be outraged.  But because the child in question, the children in question, are autistic, labeled as "low functioning", not "able to follow directions"---well, that's just life.

And the thing of it is, I usually accept it as just life.  I am not a fighter.  I was not especially chosen to fight this autism fight.  I accept reality.  I say "of course I understand".

And the other thing of it is, I don't want Janey where she isn't wanted.  She is so sensitive to tone of voice, to the mood of a room, that she often bursts into tears at tense moments occurring on such TV shows as "Daniel Tiger's Neighborhood" or "Clifford" or "Yo Gabba Gabba".  These are shows aimed at toddlers and preschoolers.  If Daniel's mother is annoyed at Daniel, or Clifford upsets Emily Elizabeth, or the Gabba folk have a misunderstanding, Janey will scream and cry and pound the TV.  So how would she do at a program or camp or activity that just plain doesn't want her there?  How would THEY deal with her toileting accidents, or arm biting, or such?  Would she be yelled at, or worse?

Although I might not like it, I can understand why Janey might not be able to attend some things.  In an ideal world, she should be able to go to anyplace "open to all".  But she can't.  But I cannot accept that after making all kinds of calls,having two kinds of insurance for her, being willing to pay,  there isn't even a place that will provide her with speech therapy, or a social skills group.  I can't accept that she can't attend the city's rec department summer program FOR KIDS WITH SPECIAL NEEDS.  I still can manage to get upset that she had to leave the inclusion school we loved.  I hate it that the only respite we are referred to, over and over and over, is a program we tried, where we personally witnessed a staff of two, one working on checking in children, supposedly supervising approximately 15 kids with severe special needs---a program held up as "the best"---one that now does officially say they can't deal with kids that need one on one attention.

I'm feeling angry today.  And I will calm down.  I'll go back to understanding that "everyone included" doesn't mean that.  I'll go back to realizing Janey is a special case.  I already do realize, very much, that we are incredibly lucky she is welcomed and loved and embraced by the public school she attends---that I can put her on the bus each morning knowing she is cared for all day, and there is a summer program for her that does the same.  But in this city, this country, this place with the money to wage wars and send people into space and provide young sports players with equipment and travel, the city that gave my sons so many incredible opportunities, there is so little for those among us with the most needs.

When asking politely doesn't work...

Janey woke up in the middle of the night a few nights ago.  It's been happening a little bit more lately, although still not at all as often as it used to.  This awakening, she was quite cheerful, but not at all tired.  Tony and I took turns staying up with her, as we usually do.  When my turn came, I tried to get her back to sleep by putting a whole bunch of blankets over her, which sometimes works.  This time, though, it just made her laugh and laugh.  And then she said "Pillow?"  I was a little surprised, as she isn't big on pillows, but I gathered up some and gave them to her.  She just kept repeating "pillow?" until finally, either she or I or both fell asleep.

The next morning, the first thing she said again was "Pillow?"  And because it was morning, I was awake enough to realize what she meant.  She was looking not for any generic pillow, but for Special Pillow.  

Special Pillow

Special Pillow is actually a pillowcase, put on any pillow.  It's the pillowcase she was given in the hospital when she had the burst appendix.  She became hugely attached to it there.  It didn't leave her side for weeks.  When we came home, she remained attached.  She never sleeps without it.  I wash it when I can, but if I want to make sure she sleeps, it better be around at bedtime.  It's the first and only object she's ever really been attached to.

It's a sign of how sleepy I was in the night that I didn't figure out what the problem was.  Special Pillowcase had fallen off the pillow it was on, and was lost among the blankets.  In the morning, when I finally wised up, I found it quickly, and Janey grabbed it for a big hug.

I've been thinking a lot about this whole incident the last few days.  The unusual part of it was how Janey didn't get a bit upset.  She just asked, repeatedly but without urgency, for the pillow.  It was her mild tone and lack of insistence, I think, that caused her not to break through my tired haze and figure out what she wanted.  

We often tell Janey just to ask for what she wants, not to scream or cry or throw a fit.  We tell her that she doesn't need to yell to get what she wants.  However, maybe she does.  When you don't have a lot of words to use, maybe tone of voice and volume and body language are necessary to get your point across.  Because she asked exactly how we ask her to, in a calm way, I didn't figure out what she meant.

I'm not sure what to make of this revelation. I think the big message for me needs to be to listen very well to her quiet and calm words (although I can't make any middle of the night promises).  Another thought, though, is that I want to try to be more understanding when she does scream.  Most children would have been able to say "I can't find my special pillow, and I can't sleep without it.  Will you help me find it?"  With Janey's mostly single word way of talking, I need to work hard to figure out what she means.  And I need to mentally translate screams into "This is urgent!  Pay attention to me right now!"

I'm not sure why Janey didn't scream about the pillow, but my guess is her desire for it was a lot like a lot of her OCD type arranging.  Often, before watching a video or eating or doing other enjoyable things, Janey arranges her surroundings.  She will turn off my computer monitor, move any laundry baskets to a different location, turn lights on or off, put the remotes on the table at straight angles, empty any half-full mugs of coffee into the sink (and then put the mugs back where they were, not in the sink!) and, depending on the day and her mood, a variety of other rituals.  She never gets upset doing these things.  She treats them like a job that has to be done---she does them in a businesslike and efficient way.  I think the pillow being with her feels like the monitor needing to be off---something to be checked off on a list.  Unlike with my OCD and I think most people's OCD, she doesn't seem to feel upset about needing to perform the rituals. So the pillow not being in place was more just something she needed to note and fix, not something terribly upsetting.

It's amazing to me sometimes how complex Janey can be.  I re-learn every day how much is going on in her mind, how much she can tell me if I learn how to listen.  I'll keep trying, Janey!  Thanks for being patient with me, sometimes!

Daytime Bedwetting, Crying, Guessing...

Toilet training.  I'd say I'm an expert on the subject, having been training Janey for about 10 years now, but that's a case where the longer you've worked at it, the less of an expert you probably are.  

My dear friend Michelle and I talk on the phone quite a bit.  Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey.  She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.  

I used to think that there would be an endpoint with the whole potty-training deal.  There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't.  It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.  

Right now, at age 12, Janey almost always uses the toilet for bowel needs.  That is wonderful.  I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.

For urine, Janey uses the toilet in some circumstances.  She wears underwear to school every day, and rarely has an accident there.  Out of the house in general, she does very well.  On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident.  Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes.  At home, though, it's much more of a chancy thing.  I'd say she uses the potty about 50 percent of the time for urine at home.  it's the other 50 perfect that is very, very tough.

For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home.  I'm not talking during sleep here.  We put her in two pullups at night, and we probably always will.  I'm talking when she's awake.  She will go over to the bed and wet it, in the daytime.  As you can well imagine, we are not huge fans of this.  We have tried everything we can think of to discourage this behavior.  We take her to the bathroom on a very regular basis, and try to get her to go.  We do everything we can to keep her off her bed when she might need to go.  We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it.  This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.

This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting.  We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep.  I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.

Coincidence or not, Janey has been doing a fair amount of crying this week.  She cried a lot after school last night, and she woke up crying this morning.  Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?"  Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it.  Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?"  The answer was clear.  I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying.  I don't know why she does what she does with the bed.  But I know that I can control how I react to it.  I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her.  But if she does do the daytime bedwetting, I can deal with it in a matter of fact way.  I can keep myself from getting angry.  I can just accept that for now, that is how things are.

I told Janey "I'm sorry I got upset about you peeing on the bed.  I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up.  You don't need to cry about it.  It's okay"  Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something.  And she smiled, for the first time of the day.

I wondered, after Janey went to school, if I was doing the right thing.  Then I stopped myself from the worrying.  I reminded myself, as I've learned to do, that there is no right way with Janey.  There's no book that tells how to parent her.  I'm writing her book.  I don't know how the chapter on toilet training will end.  It might never end.  But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.

"Participate effectively and maintain a safe environment"

I took Janey to a parade yesterday, along with my friend Maryellen.  I don't think Janey has been to a parade since she was three or so.  Overall, she loved it.  Parades pretty much have Janey's favorite features---music, dancing, being outdoors and able to move around and be loud if desired, all that.

For me, a few parts of the day were bittersweet.  A dance troupe played a huge part in the parade, a troupe from a big local dance studio.  I'm not a dance person, but I am pretty sure if Janey had followed a more typical course in life, she'd have been involved in dance.  She's amazing, in that she instantly copied every dance style she saw during the parade and did her own dance at the side of the street.  She got many smiles and waves with her high enthusiasm and her moves.  It was something watching her, doing something I couldn't do for the life of me.  As I watched the literally hundreds of young girl dancers go by, I kept thinking "Why isn't there a place for Janey among them?"  I found a list of dance programs in the Boston area for kids with autism.  I'm glad there are some, but like I've found so often, they aren't for Janey.  Here's what one of them said is a requirement for participating--- "Students must be able to participate effectively in lessons or classes and maintain an environment that is safe for themselves and others."  Yeah.  Janey isn't going to participate "effectively".  She would probably not "maintain" the environment they are looking for.  She would love the class, she would probably learn, but as several of the five for so programs explicitly said, they are looking for "high functioning autism" kids.  And sometimes, I get mad about that.  They have every right to accept who they want to, but damn it, I wish there were programs that said something like "We will work with children at any level of functioning, if they have a love of dance"

I felt encouraged by much of Janey's behavior during the parade.  She's still been in a bit of a manic phase, and the weekend was trying at points, with her often going over the top from excitement to anger and screaming.  But a few years ago, I would not even have attempted something like this parade, even with the wonderful help of Maryellen.  As we walked toward the parade route, Janey ran ahead of me a bit, and I felt so happy she is able to do that now, and I know she will stop when I shout out to her to do so.  She's able to have that little bit of independence, which is a very nice thing for a 12 year old.  She stayed with us at the parade without having to have her hand held, and she seemed to understand that she needed to not go into the street where the parade people were.

There was one moment, though, when I was quickly reminded that I need to always be on guard with Janey.  Maryellen had an umbrella, as it was drizzling.  Janey wanted to hold it, and we think to twirl it on the ground.  Before either of us completely realized what was happening, she moved close to a couple small children and started wildly flinging the umbrella around.  It could have very easily poked and hurt the kids.  We grabbed it, apologized and folded it up.  But she is so fast that it's scary.  Sometimes I'm almost lulled into relaxing for a minute when we are out and about, and I just can't.

Janey watching the parade is in many ways a metaphor for what increasingly frustrates me about life for a child like her.  She can watch, she can enjoy, but she can't really participate.  She dances on the sidelines.  And even on the sidelines, I can for a few minutes just feel like she's any other parade watcher, but if I let my guard down, things can suddenly turn.  I can't ever relax.

Because I am always arguing back and forth with myself, I'm of course thinking "She doesn't know she isn't participating.  She is happy dancing on the side."  And that's true.  Fine.  But imagine Janey belonged to almost any other distinctive group of kids.  And imagine that the group she belonged to was a group simply not welcome, not included, in basically everything.  In the past, we might have said "That's just the way it is.  It's too hard to include that kind of kid.  They don't need to be included to be happy."  Well, sometimes I have a radical idea that Janey SHOULD be able to be included in ANYTHING that other kids are included in.  Or at the very least, if there is an activity that is said to be for kids with special needs, or even specifically autism, that it should include ALL kids with autism.  Sure, it would take some doing.  But why not?  Why can't it be that way?

I do live in the real world.  I think often of Janey's old school, which tried harder than anyplace to live that dream of including all kids, and in the end, wasn't able to do that for Janey.  And thinking about that, even after several years, can make me cry.  I don't have solutions, or answers, really.  I accept, at many levels, that in the real world the challenges of Janey's behavior do leave her out of the mainstream.  But sometimes, I dream of a world where she's truly and totally included.

Advanced "Welcome to Holland"

I had a rough day yesterday while Janey was at school.  It had nothing to do with her---it involved worry and doctors that don't call back and midlife frustrations and general malaise and so on and so on.  She came home and lifted my spirits immensely.  She had such delight in the everyday afternoon and evening activities---having some cheese as a snack, walking to the ice cream store, hearing music on the way back and dancing, seeing Daddy come home, getting some Chinese food for dinner---it was great.  She even made us laugh with a new phrase.  She asked Tony for a ride and he said "Sure!" and she said "Are you joking me?"  She was a delight.

And for a brief moment last night, as I thought about it all, I was thinking how although she is very different than most 12 year old girls, there are many parts of who she is that are lovely in their differences.  She loves us wholeheartedly.  When Tony got her off the bus instead of me on Wednesday, upon seeing me when I got home she gave me a huge hug, just thrilled to see me again.  She has fun with very small pleasures---a song she likes, a trip to the ice cream store or McDonalds, a video that she's seen over and over.  She doesn't long for what she doesn't have---she isn't asking for Ugg boots or a North Face jacket or whatever else is in right now (and those might be totally out---I don't know, and that's part of it!)  For a minute, I was thinking "it's a different life, but it's a good life!"

Then it hit me---wasn't that awfully like what "Welcome to Holland" says?  Welcome to Holland--a well meant story written by a kind and caring mother about her specific circumstances that has turned into something tossed to every special needs parents as a way of saying "Quit all your griping!"  Of course I am being a little sarcastic there, but that's often what it feels like, like a way those who have never lived the life can say "What's the problem?  It's not the same as most lives, but it's just as wonderful in its own way!"

And I felt angry, really angry.  I felt angry for many reasons.  The big one was that having an afternoon like yesterday with Janey wasn't something that just happened.  It has taken many years to get to where we sometimes are today.  It has taken the dedication of many people---Tony and me, yes, but also many other people---all the people in the Boston Public Schools who have worked with Janey over many years (and they are an amazing bunch of people), the doctors and psychiatrists who have helped us find what seems like the right combination of medications, Janey's brothers, the people in the Hyde Park community like our neighbors and store workers who are happy and excited to see Janey no matter how she acts, my friends, both those I know in person and those I have met virtually, who give me ideas and support and love, the wider autism community who has shared their experiences and advice----it's taken a huge amount of people and work and knowledge to get Janey to where she can have an afternoon like she did.  It didn't happen just by somehow arriving in the wrong country and accepting that I was in Holland and not Italy.

We like feel good stories.  We like happy endings.  What we don't always like is hearing that it takes work, it takes money, it takes resources, it takes tears and false starts and dead ends and heartbreak and sweat and dedication and so much more to get to those happy endings.  And they aren't endings, really.  I've read about something called the "end-of-history illusion".  We as humans often feel like the stage we are at right now is the evolved, end stage.  We see work and change and developments in the past, but we sort of assume the future will be steady, that we have done the work and now we just sit back and reap the benefits, and that is of course not true.  The future will hold as much work and as many changes as the past, most likely.

Our society is set up for people to travel to Italy, not Holland.  A trip to the special needs world is not just a different trip, it's one where none of the guide books help you, one where you have no hotel reservations, one where before and after the wonderful moments you might have, there are many times of confusion, frustration, fear and despair.  There are kind people in Holland, amazing people who do more than you would ever expect to help you, there are beautiful sights, but don't let anyone tell you that it's just another form of Italy.  It's not.

"A Good Mother Would Never...."

Like many mothers, I have an idealized image of a good mother in my head.  In my particular case, it's the autism brand of good mother.  The autism good mother is endlessly patient.  She completely accepts her child's autism, while at the same time doing everything in her power to help her child live in the world.  She constantly seeks out therapies which would help her child, yet at the same time makes sure her child realizes they are perfect just the way they are.  She is careful with diet, with tone of voice, with IEPs, with toys, with TV watching...with everything.  And the one thing she never, ever does, of course, is yell at her child.

We all know the good mother is a myth, but I think many of us still strive to be that myth.  Part of it is what we read.  Those writing about parenthood, without maybe doing so consciously, paint themselves in the best light possible.  We might jokingly admit to small transgressions "I put on a video just hoping she would leave me alone for a while!  I gave her soda for breakfast!  I dressed her in yesterday's clothes again!"  But we don't talk about the moments that are not funny, not silly.

The other night, I yelled at Janey.  I really, really yelled at her, loudly and angrily.  I feel awful about it.  I'm not a yeller.  I don't lose my temper often.  I can only think of a few times in my life I truly lost my temper.  That's not a result of some wonderful self-control---it's just not in my nature to get very angry very often.  I get depressed instead, or silent, or secretly seethe internally.  But this time, I really yelled.

The setup was this:  Janey had come back from a ride with Tony.  I took her to the bathroom, as we do after a ride.  She didn't use the toilet.  I asked her a couple times if she was sure she didn't need to go, and she repeated "sure she didn't need to go!"  Then she wanted to cuddle on the bed.  As soon as we got on the bed, she looked at me, smiled, and proceeded to wet the bed all over.

For more background, this was the 5th or 6th time in a row that exact scenario had played out.  I'd take her to the bathroom, she wouldn't go, and then she'd go straight to the bed and wet it.  I had spent the last many days washing blanket and sheets.  She won't leave waterproof covers on---in her eyes, under the covers usually means straight on the mattress.  We got a new mattress, badly needed, a few months ago.  We can't buy a new mattress every month.  

So, without stopping to think, without taking into consideration all the things I want to have taken into consideration with Janey---that she might not understand what I have said, that there might be sensory reason for her actions, that she truly might not realize she had to go until she's on the bed, that she prefers to use the bathroom totally on her own and not be taken by me, that the reason for her actions might be something I don't understand at all but that in her head is totally reasonable---I yelled.   I said "You stop that!  You go in the bathroom right now and use the toilet!  YOU CAN'T KEEP PEEING ON THE BED!!!!"

Janey's response?  She laughed.  After a while, she did get the message that I wanted her to go into the bathroom, and she went.  I lay there, angry and wet and just plain tired of it all.  It took a few minutes for the guilt and sadness to set in.  I don't want to be like that.  I don't want to yell at Janey, or have anyone yell at her.  

A part of me does understand that even a saint would sometimes lose their patience with Janey (or with almost any kids, at some point).  I do know that it's likely that every parent on earth has yelled at their kids once or twice.  But still---I wish I hadn't yelled at her.

When I calmed down, I told Janey I was sorry.  I told her that again the next day, and the next.  I washed the blankets and sheet again.  I put down the pads again, and hoped she wouldn't move them.  I told myself that her progress with toilet training has been great lately.  She has worn underwear to school for months, with barely an accident.  She almost never misses with "messy" toilet needs.  She uses the toilet for urine at home much of the time, and she prefers underwear to pullups now, and we even take her in the car in underwear.  The bed issue is something we need to work out (for daytime---I don't imagine she'll be out of pullups at night for a long time, if ever), but overall, she's doing well.  

In some ways, there is good in the Good Mother ideal.  It's something to aim for.  But none of us are going to always be that Good Mother.  However, most of us are smaller case good mothers, indeed.  We love our kids.  We try every day to do the best we can for them.  We aren't perfect.  But especially for those of us with children with special needs, we need to take the Good Mothers we read about with a grain of salt, and to keep just being the good mothers we are, and supporting each other in that sometimes incredibly challenging task.