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.

The Summer Without Sleep

It's about 11:30 pm now.  Janey is awake, wide awake, watching TV.  Last night, she slept not at all.  This used to be an unusual, shocking thing, that she could go totally without sleep all night now.  It's not any more.  In time since school ended for the year, there's been about six nights without sleep, without ANY sleep.  There was one last Thursday, just five days before last night's non-sleep night.  I hope there's some sleep tonight.  It seems like there would have to be.  But maybe not.

What is going on?  For most of Janey's life, sleep has been one of her lesser issues.  There were always occasional insomnia nights, but not a huge amount, and very rarely ones with no sleep.  Something changed recently.

I don't have a lot of theories.  One of the few I have is that it's just her age.  She is almost 15, and that is an age you start staying up later.  I've read that it's theorized it's biologically hard-wired, because it gives teenagers a time to relate without older or younger people awake, and that leads, indirectly, to the human race continuing.  Maybe Janey is feeling that draw, to be up at night when others aren't.  But while most teenagers might realize not to take it too far, to eventually sleep, Janey doesn't.  She just stays awake.  And she doesn't get the desired alone time.  We can't leave her alone.  If she's awake, we are awake, or trying hard to be awake.

If Tony hadn't retired early, if he had to get up for work each day...well, we'd have dealt with it, because what else can you do?  But even with him home, it's very, very hard.  After missing a night's sleep, even with the two of us trading off, you aren't yourself.  It's hard to explain unless you've had a period of being chronically sleep-deprived.  It feels like you aren't fully alive.  It feels like everything is happening in a daze, a mist.  You can't do anything that requires thought or effort.  It's like your mind tries to half sleep even when you are awake.

Janey started summer school this week.  I don't know if she slept at school today. We have always sent her to school even when she doesn't sleep, as unlike Tony or me, she seems little affected the day after not sleeping.  Even after the day after becomes the night after, she just doesn't seem sleepy.  She often stays up quite late the night after not sleeping at all.

We plan on talking to Janey's psychiatrist soon about this not sleeping.  Right now, we do give her melatonin, as we have for years, for all the good it does.  When I take melatonin, which I do now and then, I fall asleep always in about half an hour.  I don't know if it does a thing for Janey any more.  Her pediatrician has told us it's okay to give her Benadryl on the very worst insomnia nights, but that also now seems to have no effect.  If I ever take Benedryl, I'm knocked out like a light.  So I don't think any other sleep medicine is going to work.  The urge to be awake on the non-sleep nights is stronger than most anything.

It's gotten so we can tell ahead of time when Janey's not going to sleep a certain night.  The main giveaway seems to be her attention span getting extremely short.  On evenings before she sleeps, she changes YouTube videos or songs absolutely constantly, after about 10 seconds.  She watches the same pieces of video over and over and over, separated by little pieces of a different video.  She paces while she does this, and often does her OCD routines---straightening out the remotes on the living room table, turning on and off lights or the AC, doing spot checks to make sure we aren't crossing our legs or arms---the routines we've seen for many a year, but in a more intense way than usual.

The non-sleeping probably affects me almost out of proportion.  When I don't sleep, I feel hopeless and isolated.  It can feel, in the middle of a long, sleepless night, like we are on a little island or planet, completely alone.  It can feel like morning will never actually arrive.  It can seem like Janey will never sleep again, that this will go on forever and ever and ever.  I know my mind plays tricks on me when I don't sleep.  It can make my outlook pretty bleak.

And now it's close to midnight.  Janey is awake, watching a video she has watched many times tonight, one where a woman spells the names of animals after pronouncing their names in odd ways---KAN-grew for Kangaroo.  That, and the one where Mr. Harlow opens surprise eggs, and the three cats called Cutians, and Coco-Melon videos, all the videos on heavy repeat during sleepless nights---well, if I never hear any of them again, that would just be fine.  Let's hope for a few hours sleep tonight, and let's hope the summer someday becomes a sleepy fall.

Still Screaming After All These Years

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

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

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

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

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

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

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

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

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

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

Arranging

Setting up the scene---Janey is home from school in the afternoon.  She has asked me to put on a show---let's say Kipper.  As the show starts, she starts her routine.  She takes the remote from me and places it in the middle of the right couch cushion.  She observes it, and then re-places it several times to make sure it's right in the middle.  She then surveys the room, and looks for laundry baskets.  I have four of them, and I tend to leave them in the room after folding laundry.  Janey goes to any she sees and moves them carefully to the place she sees as correct.  Then, if there are any shoes in the room, they need to be lined up, left on the left and right on the right, next to each other.  If it's a light arranging day, the next step is the last---she looks in the trash and makes sure nothing in there is out of place.  Certain things don't belong there---magazines, wet pull-ups, most any form of crumpled paper.  Those items get taken out and put next to the can.  Then, and only then, does Janey settle down to watch her video.

Although it sounds hard to believe, I first noticed Janey arranging things literally as soon as she could purposely use her hands.  She would make sure toys she could reach were symmetrically positioned.  Her arranging habits well pre-date her autism diagnosis.  Over the years, the habit has ebbed and flowed, sometimes almost disappearing for long periods, sometimes being out in force.  Lately, it's at a huge peak.  The arranging rituals can take a very long time.  They are almost always done before she does something she enjoys or something relaxing---before a video or before going to sleep at night.

Unlike many of Janey's behaviors, I relate very much to the organizing and arranging.  Not that I am much of an arranger.  But I know how it is to feel I need to do something that to an outsider doesn't seem to make much sense.  I'm completely sure Janey has OCD (Obsessive-Compulsive Disorder).  I am sure because I also have it.

My OCD never took the form of arranging.  It's funny (in a strange, not ha-ha way)---OCD has a lot of forms, and most people specialize in one of them.  I was a checker.  I checked things.  On my worse days, I could check my pocketbook to make sure my credit cards and keys were in it thirty times in a row.  I could re-open a bill envelope over and over to make sure I put the check in it.  I could go down to the cellar enough to get a great workout to make sure I'd actually started the dryer.

OCD doesn't bother me much any more.  Mine has been very well under control, with medication, for a long time now.  Even before that, like with Janey, sometimes years and years would go by without the checking urges.  It's a strange disorder.  Like Janey also, I think I had OCD pretty much from birth.  I can remember as far back as my memory goes needing to check things, feeling like if I didn't check them, sometimes horrible, something unacceptable, would happen.  Unlike Janey, though, I usually knew that my checking made no sense.  Most people with OCD have that knowledge.  We know our obsessions and compulsions are generated by our minds, but that doesn't make them any easier to not do.  I don't think Janey understands that.  I don't think she has the kind of perspective that allows her to see that.

Sometimes, when the arranging gets out of hand, almost anyone would feel like saying, with some degree of impatience, "Just stop that!  Stop moving the baskets!  Stop taking things out of the trash!  Stop uncrossing people's crossed legs (another big one)!"  But I don't usually feel that way.  I know how it feels.  I know how, despite in my case knowing full well I didn't need to check my pocketbook again, I still couldn't help doing it, no matter how hard to tried to fight it.

When we next see Janey's psychiatrist, I'm going to do my level best to explain more effectively than I have in the past what is going on, and ask him about medication specifically for OCD.  I have resisted, partially because I hate the thought of her being on another medication and also because, interestingly, I think the lack of perspective in her situation makes the OCD less distressing.  It's a bit of a problem for us, but for her, I think it isn't, mostly.  I think it just feels like something that needs to be done, or it did in the past, until this latest escalation.  Now, occasionally, she is getting upset, because part of her arranging now involves my placement.  I am supposed to be in the bedroom while she watches her shows.  I can't always be there, partly because I need to check on her quite often and partly because I don't always want to just stay in there for long periods.  So far, she has mostly accepted it when I've explained I have to be elsewhere---at least for a few minutes, until she tries again to push me to the bedroom.

In a strange, small way, it feels good to be able to relate to one of Janey's behaviors as I do with this one.  I'm not autistic, which is why I often get some very good insight from those adults I know who are autistic on Janey's behavior.  With the OCD, I have the perspective. I've talked before about having OCD, but not quite in this detail, and it's a little hard to do, but also---very fair.  I write about Janey, hoping I am representing her in a way she'd approve of if she could read what I wrote, and so I should also be willing to be open about myself.

Now, to have a few minutes to myself before the bus arrives home and we start this afternoon's session of arranging.....

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!

Autism and OCD?

Janey comes to me with the remote, wanting me to put on a Netflix show.  I do, and she takes the remote back.  It gets placed on a closed laptop, precisely in the middle.  She watched a few minutes of the show, and then goes over to the remote to adjust it, to make sure it's in exactly the right place.  A few more minutes of watching, and she goes to where her shoes are.  She's previously arranged them as they always must be, left on the left and right on the right, lined up exactly next to each other.  She looks at them and does a little adjusting.  Then she touches the corner of the coffee table, then the wall in a certain place.  She looks at me.  I've broken a rule.  My legs are crossed.  She patiently takes my feet and moves my legs to the right, non-crossed position.  Then she watches a bit of her show, and then it all starts again.

Janey has never been formally diagnosed with OCD, Obsessive Compulsive Disorder, but I am quite sure she has it.  I have more than a passing knowledge of the signs.  

I've had OCD as long as my mind goes back.  It's been well under control for many years now.  It never goes away, but it affects my life very, very little.  Still, I well remember what it was like.  There are several types of OCD.  Mine was a checking one.  I needed to check that things were where they should be---my keys in my pocketbook, my pocketbook hung up.  When I was little, it was bookbags, or stuffed animals, or even little rocks I'd collected.  Checking once was no assurance.  I'd have to check over and over and over---sometimes hundreds of times.  

Janey's OCD seems to fall into the arranging/symmetry category.  She needs things to be in the right place.  Not all things---she's as much of a slob as the rest of us with most things---but certain things, like her shoes, must be just right.

If you are even interested in learning more about OCD, I recently read a fantastic book about it---The Man Who Couldn't Stop, by David Adam.  It's a personal account combined with the science and psychology of the disorder, and it was one of those books which gave me about 20 "That's exactly how it is!  Now I get it!" moments.  It was terrific.

Thinking about Janey, I am quite sure I first saw the signs of OCD in her long before the autism.  As soon as she could use her hands, maybe at 7 months or so, she would move my hands to the place she wanted them to be, to hold things symmetrically.  Even that young, crossed arms or legs bothered her.

OCD is strange in that it ebbs and flows.  Years can go by with it barely showing its face, and then it pops back up badly.  Lately, it seems to be at a high level with Janey.  It's interesting---it doesn't seem to distress her a lot.  When she does the arranging, it's with a huge amount of patience.  It's like a job that must be done, hundreds of times if necessary, but with good will.  Much of what is usually distressing about OCD is that you understand what you are doing would be considered crazy by most.  When I was checking something for the 100th time, I was telling myself "STOP IT!  You KNOW it's there!  What is wrong with you?"  Maybe Janey doesn't have that inner voice telling her anything like that.  Sometimes, the OCD rituals seem to calm her.

There are times, though, that it must be awful to need something done a certain way and not be able to communicate that.  Lately, after a shower, I am not drying Janey's hair the way she feels it should be dried.  From what I could figure, I used to dry her hair some specific way, while saying "Let's dry-za-la-high-za!"  I say a lot of little things like that, as I think most people do when talking to someoen who doesn't often talk back.  We tend to want to fill the silence.  But lately, I'm somehow not saying it right or drying in the right sequence.  Janey gets very upset.  She grabs my hands and pulls then with the towel onto her head, and screams "DRY-ZA-LA-HIGH-ZA!" over and over.  

The other night, after a long round with the towel, I told Janey about OCD.  Like with so many things, I have no idea how much she understood, but I told her that I know how it feels, that I've felt the same thing.  I talked to her about the shoe arranging, the remotes, the crossed legs, the drying.  I said her mind might tell her that bad things will happen if she doesn't make sure everything is in the right place, but that's her mind playing tricks on her, silly mean tricks.  I told her I understood.  She looked at me for a long time, one of those uncommon looks of connection.  I don't know what she took in, but I hope it helped, a little.

It doesn't seem fair.  If Janey does have OCD, why must she deal with that in addition to everything else?  But of course, as the classic saying goes, life isn't fair.  And in a small, strange way, it's a connection with Janey, a part of her I share, sometimes I can maybe help her with.  I'll keep trying.

A Tale of Two Weeks

As we put Janey on the bus this morning, watching her sing and skip her way happily out the door, we shook our heads when thinking of how drastically her behavior can change from one week to the next.

Last week, for about 5 of the days anyway, was incredibly tough.  Janey was screaming almost from morning to night.  Nothing made her happy.  She wanted only to watch videos, and then to frantically change to another video the moment the first one started, and to ask for food and then want a different food the minute we got it.  Even car rides, usually the last resort that always works, didn't always work.  We were in despair.

And then---a transition period leading to back to school.  This week, I've gotten good reports from school every day, and home has been a delight.  Truly, truly a delight.  Janey is all smiles.  We are having a huge amount of fun with her.  She's getting into new music every day, and last night, coming back from a ride with Tony, they were both singing songs and laughing, bonding in a way that had nothing to do with autism and everything to do with just liking the same things.  The few times she's gotten a little upset, one play of her favorite new song (Immigrant Song by Led Zeppelin) has cheered her right up.

Janey's school, not fancy, but a great place

What happened to cause the huge turnaround?  Well, the big one is school.  Janey is far happier with a school routine.  Her teacher, Ms. Erin, is great, as are all the staff members I've met.  Janey is a challenge, even in her autism-only program.  But they meet the challenge and constantly think of new ways to work with her.  And we, having the time she is at school to regroup, do better dealing with her once she gets home.  I think other factors helped Janey move out of her funk, too.  One was me going away, and just having a change of parenting for a bit, and then going on an overnight treat trip to the great inn we were at.  The weather made a difference.  Janey needs to be outdoors as much as possible, running around.  But all that doesn't quite explain the change.

I think a good percentage of what drives Janey to be happy or be sad is something we just don't get.  She might have pains she can't explain to us.  There might be something worrying her that she has no way to tell us.  She might be having a flare-up of OCD type thoughts and needs---that seemed to be showing itself in the subtle ways it does with her last week.  She could be bored.  She could be angry.  She could just be a pre-teen annoyed with having to spend so much time with her parents.  Often, there is just no way to know.

Tony and I talked this morning about how we should approach another tough spell.  There are some things we can do.  One big one is changing things up.  If she's in a terrible stretch, maybe we can somehow go away for a night, or take her on a big day trip somewhere new.  We can, if the weather at all permits, get her to a beach---that seems like therapy to her (and to us)  We can't make school start back up, or help her with issues we don't know are happening, but we can ride it all out, with hope that it won't last forever.  That might be the key.  When you are in the middle of a horrible week, it is hard to see past it, or to remember there was ever better times.  But the bad times, overall, are not as frequent as they once were, and spring is coming.  We'll get through this winter.

Autism and the Misconception of the "Magic" Mental Disorder A Guest Post!

This is a guest post written by my older son William, a sophomore history major at Brandeis.  He's an amazing writer and researcher, and I am so proud of him.

As a millennial and the older brother of my sister Janey, I have surfed the internet countless times, and I often find myself drifting to articles about autism and other mental illnesses (if one classifies autism as a mental illness, a debate which I will not get into right now!), partly out of my own curiosity, and partly as a way to understand the difficulties that Janey faces. One thing that always strikes me is the amount of lists, sometimes poorly compiled, of famous individuals who people speculate had autism or other mental disorders. People say that Albert Einstein, Thomas Jefferson, Alan Turing, Vladimir Putin, William T. Sherman, and even Abraham Lincoln could have had or have autism. I am not sure if the people compiling these lists are psychiatrists, but they do have a goal in mind.

I think that it is out of a genuine compassionate desire that people say that truly remarkable individuals throughout history have had difficulties such as autism. Countless movies such as The Aviator, The Rain Man, and A Beautiful Mind attempt to chronicle remarkable individuals’ lives and document their struggles with mental illness. Even avenues such as YouTube seem to eschew this benign praise and recognition of remarkable people with mental differences, as evidenced by videos such as “Jake, Math Prodigy Proud of his Autism”. And while drawing a correlation between something like autism and outstanding achievement or skill tries to empower the autistic community and other communities scarred by prejudice against people with disabilities, the extent of these correlations in modern media obscure a critical struggle of people and families of people with disabilities: the agonizing pain of the disability itself.

Sure, I concede that perhaps Albert Einstein had autism, or that Howard Hughes had OCD, and these two disorders probably shaped the greatness they became know for. Yes, sometimes individuals with autism achieve great fame and recognition and thus empower other autistic individuals and their families. I know all of these things to be very true. But, pain is the hallmark of any disability, and autism is no exception. Howard Hughes may have created spectacular movies, but he also suffered enormous pain everyday from his brain’s unrelenting desire for cleanliness and compulsion. Similarly, autistic prodigies such as Daniel Tammet can learn the Icelandic language in a week, but suffer tremendous pain in what for “neurotypical people” are everyday social interactions.

I know I may come off as stiff, formal, and academic right now, and in many ways I am. But what I have said resonates deeply with me and how I view my sister Janey. When my mother tells other people that Janey has autism, I want people to realize that that means Janey lives with constant, unrelenting pain everyday. Things that most people take for granted such as speech are tremendously difficult for Janey, and thus she tries to cope through screaming agony or what a parent who has not experienced autism first-hand might call “misbehavior” or even more disparaging, “bad parenting” (PLEASE never say that last one to my mom!). Janey cannot express even a simple desire for something like food easily. Partly out of our human nature and our frustration for Janey, the entire Amara family is profoundly affected by the chronic disability that Janey has called autism. Yes, she shows a passion for music, but that doesn’t mean she’s playing Carnegie Hall on the weekends. If you take anything away from this entry, it’s this: when you learn my little sister Janey has autism, don’t let the first thought in your head be the misconception that Janey is a savant with almost magical abilities. Let the first thought be that Janey, like millions of other autistic people and other people with disabilities, suffers tremendous, chronic pain everyday from her disability and this pain has profoundly shaped her life and the lives of her loved ones.

When there's no right answer

Recently, I've gotten addicted to an on-line card game called Hearthstone.  It involves strategy, you can get on at any time and play a 10 minute game, and it's something I can do to motivate myself when I need to get going with other work---"Okay, I can play one game, and then a load of laundry, one more game and a bunch of dishes..", that kind of thing.  It's the kind of at home treat I think every parent of a child with autism needs---just something to help get through the day that requires no preparation and can be indulged in any time there is a few minutes to spare.

Freddy enjoys a game of Hearthstone now and then too, and last night, he asked to play. Which was great, except for one thing.  It was during the first half hour after Janey got home from school.  That first half hour is crucial in determining how the rest of the night goes.  There are very specific rules for what I do during that time, specific and simple.  I am supposed to be on my bed.  Janey runs right in as soon as she is home to make sure I am there.  I take off her shoes and she lies down next to me, and we snuggle.  Then, depending on her mood, she gets up to do other things.  You would think that would mean I could get up too, but you would be wrong.  I need to stay right there.  Like other things in Janey's world, like the TV and Wii remotes, there is a correct place for me at certain times, and after school, that place in on the bed.  It is important to Janey that I be there.  She checks back often to make sure I am where I'm supposed to be, and doing what I am supposed to be doing, which is nothing---I can't read, listen to music, play with the iPad---I am supposed to just be there, in case she needs me.

When Freddy asked to play, I knew I was taking a risk.  Janey's been in a great mood lately, and I wanted it to stay that way.  However, as any parent of a teenager knows, it's not that common to get an invitation into their world.  I knew if I said no to playing with Fred, I wouldn't get another invite soon.  And it's extremely important to me to be there for my boys, too.  Teenagers, and I think boys in general, don't come out and tell you they need you around, they need to talk, they need you available, but that doesn't mean they don't.  They do.  So I decided to throw caution to the wind, get up and play some Hearthstone.

The results were quite predictable.  A few minutes into the game, Janey came over and grabbed my hand, and said "Snuggle on Mama's bed!"  I said "In a few minutes, Janey.  I am playing with Freddy right now"  If you think that worked, you don't know Janey.  She repeated herself, more loudly, and then tried hard to reach over and turn off the monitor.  I didn't let her, and she rapidly got more and more upset.  I could see I was about to lose her into her screaming and crying world.  But I also knew I was going to lose the round of the game to Freddy in just a few moves, something I don't usually do (yes, I'm fairly good at the game, not to boast or anything...)  I decided to hold out, to not quit, to keep playing.  And of course, Janey melted down, a meltdown that lasted until she went to sleep.

Now, what should I have done there?  That is where there is no right answer.  Should I have given in and quit the game, because Janey is younger than Freddy, is autistic, has greater needs?  And also, because I knew the immediate result of not quitting would be drastic?  Or was I right to stand my ground, to give Freddy some time and attention?  Over the years, I know my boys have been shortchanged because of Janey's needs.  Often, with teenagers, that's not a totally bad thing.  I think most teenagers like a little space.  But there's a limit.  Also, I was enjoying myself.  Janey was watching a video while also watching Tony make supper.  She didn't plan on staying on the bed with me.  She just wanted me there.

Unlike in Hearthstone, where making the right series of moves leads often to a win, and in which there is a clear win or lose at the end of a few minutes to show you if you've decided correctly, there is no clear answer so often when it comes to making choices about family life and autism.  I'm sure I've made the wrong choice very, very often, on much bigger issues than this one.  And I'm sure I'll continue to do so.  Autism doesn't play by rules.  It asks more of us than we can give.  We can't do everything right.  We can't be a perfect parent to all our children, all the time.  We have to just make our choices and hope for the best, and accept that it's a rigged game in many ways.  There isn't going to be any clear winner, but hopefully, we can play the best game we can along the way.

OCD and LFA....combine for frustration...

Lately, it's becoming more and more obvious to Tony and me, and probably to almost anyone who spends any time with Janey, that she has Obsessive-Compulsive Disorder, OCD.  I don't normally like to play psychiatrist and do freelance diagnosing, but I have more than a passing familiarity with OCD, and it's getting pretty hard to miss.  Combining it with Janey's low-functioning autism and her intellectual disablity---well, let's just say things have been a little tough lately.

How does the OCD show itself with Janey?  Her particular brand of OCD seems to be the arranging brand. Here's a good explanation of that... link.  Janey needs to have certain things in certain places.  The biggest example of this is the remotes.  To watch TV, we use a TV remote and a Wii remote.  The Wii remote accesses Netflix and Amazon Instant.  Janey needs the Wii remote to be on the lower left corner of one table near the TV, and the TV remote to be on the lower left of the other table near it.  She will adjust them many, many times an hour, to make sure they are just right.  Another example is people's legs.  She cannot stand crossed legs.  If anyone in the room has crossed legs, she will go over and physically uncross them.  If they re-cross them, she'll uncross them again.

The odd part of these needs is that openly, she doesn't get upset over things being out of place.  She just "fixes" them.  This from a girl that can scream for an hour over not getting cheese cut as quickly as she wants...  But the OCD needs seem different, somehow.  She seems to just feel they have to be fixed, with a minimum of fuss and with infinite patience for our lack of understanding.  It's like it's her job---arranging things in a world that is constantly un-arranging them.

The most annoying need Janey has OCD-wise is lights.  They need to be turned off or on, in a system that is hard for us to figure out.  As best as we can figure, usually they need to be on in the daytime and off in the evening, but back on in the middle of the night.  This is pretty much the opposite of what we want.  I can't tell you how many times I've been trying to read something in the evening when Janey starts her light patrol and turns off the light.  I turn it back on, and within minutes, even if she's not in the room when I turn it on, she's back to check, and off it goes.  If she wakes in the night and the lights are off, she gets up and turns them all on, often waking us all up in the process.  She does this quietly and efficiently---no fuss, no screaming.  Just determination.

Touching certain objects is part of Janey's OCD also.  If you follow her around the house on her light patrol, you see that she needs to touch the same places each time.  Most especially, she is very focused on touching the side of a certain bookcase.  I am sure she touches this area hundreds of times a day.

A big part of OCD is the feeling that something will go very wrong if the rituals are not followed.  There is no way for Janey to explain to us what she feels will go wrong, and I don't even know if she can consciously form a definite worry, or if she just feels the compelling need for things to be put right.  But I suspect that very often, when she gets upset out of no-where, it's because she is somehow not able to perform a ritual or put right a wrong she feels needs to be righted.

It seems particularly cruel to me that fate has dealt Janey OCD---a disorder that my family seems to have a gene for.  It's hit us over and over (including myself).  But in Janey's case, more than even usually, the urges must be confusing and overwhelming.  I think she's dealing with them as well as she could be expected to do, but it breaks my heart that she has to deal with it at all.

Puzzling out the rituals

After recently figuring out what Janey really meant by her common phrase "Snuggle on Mama's bed" (which I wrote about here), I've been more alert to other rituals or OCD-like needs that Janey has.  It's tricky to figure out, as she talks so little.  I think with many of the rituals, she just goes ahead and does them, quietly, because it's too much work to talk about them and because she's not driven socially to share them.  Others, though, involve us, and I'm realizing much of her speech she does have might actually be in service of trying to get us to understand those needs.

The big breakthrough this week involved how Janey is often bringing me clothes, and saying "Put on shirt" or "Put on pants".  This almost always happens when we get home from someplace, like school or shopping.  I figured, for years, she was asking me to change her clothes, and I usually did, because I try to do what she asks if there's no reason not to.  But often she would freak out as I tried to do this, get hysterical, take off all her clothes, throw the clothes around, and I'd say something like "Fine!  We won't put that on!" and think to myself "Why is it always this way?  Why does she ask for things she doesn't want?"  Lately, though, she's been more often bringing me a piece of my clothing.  I assumed she was confused, and wanted to put that on her, and I even did a few times, which she sort of half seemed to accept.  FINALLY, it struck me.  When she brings me clothes, she wants ME to change my clothes.  It's something I often do after coming home from someplace, a lot because I'm a slob and have spilled food on myself or gotten my pants muddy or something.  I guess in her mind that became a ritual---Mama changes clothes when she gets home.  When I didn't, I wonder if she felt uneasy---is Mama leaving right away again?  Why is she not doing what she is supposed to?  And gradually, she realized that some clothes were mine and some hers, and tried in her best way to show me what she meant by bring me my clothes.  This week, as soon as she brings me any clothes, I go change my clothes.  The look on her face is priceless.  It's so wonderful to see her realizing I finally understand.

The next step would be to do what she needs me to do before she asks.  I've tried to do that with the Mama's Bed issue.  Tony has been picking Janey up from school, and when I know they are about to get home, I get on my bed, so when she walks in the door, I'm where she needs me to be.  This has greatly reduced her screaming right upon getting home.  I might start to try that with the clothes.  When we get home, I'll let her know right away I'm changing my outfit, and see how that works.

There's lots of littler rituals we've noticed.  When we get in the car, Janey has to push on the central console area between the front seats.  When she walks by a certain bookcase, she touches the concrete block we used to make it.  She doesn't eat food until someone else touches it to their lips (for the first bite), which I think came from when she was a baby and I would test how hot or cold food was that way.

I can't imagine how it would feel to have certain things that need to be done a certain way when it's so hard to communicate that.  There have been times in my life I was quite affected by OCD.  It's been a long time since it's been a problem, but I well remember it, and how extremely strong the feelings are that things MUST BE DONE RIGHT.  I'm sure at least some of Janey's tantrums come from us just not getting what needs to be done.  I am not sure what to do with this knowledge.  I am sure there's medication she could take, but I am not sure I'm ready for that step.  There are cognitive ways to deal with OCD, but those would be beyond Janey.  I am trying to talk to her about her feelings in very simple terms, just saying things like "It's scary when Mama isn't where she's supposed to be, isn't it?" and I get that response---that look of surprise and thankfulness.  I think for now I'll just keep observing, and trying harder to figure out what Janey is telling me, even if she doesn't have the words to really explain it.  I think it's more important now to establish her trust by showing her I do understand than it is to try to overcome her rituals.  We'll keep on truckin'---keep on trying to figure out my puzzling girl.

Decoding "Snuggle on Mama's Bed"

"Snuggle on Mama's bed" is the phrase Janey uses far more than any other.  She probably says it 20 or 30 times a day.  It's often the first thing she says to me after we've been apart, the last thing she says to me at night, and the first thing she says to me in the morning.  So that's why it's a little strange that it's only the past week or so I really figured out what it meant.

For years, I thought the phrase meant what you would think it would mean---that Janey wanted me to snuggle with her on my bed.  I would do so when she asked, if at all possible.  Sometimes it seemed to calm her down, sometimes not.  But oddly, she'd often ask it when we were already snuggling.  Or she'd ask it, snuggle with me for a second or two, and then jump up and go on her way.  When she did this, I'd get up too, and go about my business, only to have her come back a minute or so later and ask the same thing again.  We'd sometimes go through this for 10 rounds or more, and Janey would get very annoyed if I resisted the constant demand for what I saw as second-long snuggles.

What led me to figure it out was noticing that more and more, Janey wants physical things to be a certain way.  Tony, Freddy and I actually all noticed this separately, but didn't talk to each other about it until one day late in the summer.  Janey does a round of the house, putting things as they should be.  The door from the living room to the bedroom must always be closed.  The Wii remote that we use for Netflix must be on its back, not on its side or upside down.  The blankets on the edge of the couch must be in a certain position.  Any room that is being used in any way must have a light on.  I could go on and on.  Obviously, there's a touch of OCD there (something I am far too familiar with), but it took us a while to see as Janey doesn't seem to get upset by things out of place---she just fixes them. Or does she?

I wonder now if many, many of Janey's long crying spells have something to do with something that is not in the right place, that is out of place and can't be fixed by her.  And that is what I finally figured out about "snuggle on Mama's bed".  It doesn't mean she wants to snuggle with me.  It means she wants me on my bed.  She wants me in what she sees as the "right" place.  And she gets upset if I'm not there.  It's a little flattering, actually, that I am more important that doors or remotes.  She needs to know where to find me, if she needs me.  She doesn't like me to be unpredictable.  I'm not sure what it says about me that being on my bed is the right place for me, but OCD type thoughts don't always make any sense.

I tested this theory a couple ways.  First was just talking to Janey about it, saying "You like Mama to stay on her bed when you feel a little nervous, don't you?  That's why you ask me to snuggle on Mama's bed, to get me to be there?"  The look on her face said a huge amount---a mixture of surprise and extreme relief.  I then said "You are upset now, so I'll get on my bed for a while so I'll be there if you need me"  Janey came over to me, tapped me, went to the living room, came back in a few seconds to make sure I was there, tapped me again---over and over and over.  She stopped crying, she looked hugely relieved---we were both very happy.

However, just understanding Janey in this way doesn't really create a solution.  Obviously I can't spend every single minute on my bed (although sure, there are days I'd go for that)  And if I am alone with Janey and she is in a very upset mood, I have to be close to her to make sure she's okay---I can't be on my bed while she runs around.  But in limited cases, like when Tony is also home and she is having a fit, I am going to, at the first request to snuggle, just get on the bed and stay there for a while.  When I get up, I'll tell her.  I'll try to make that little part of her world predictable, for now.  I'm working without a map here.  I doubt there's anything in the parenting literature that tells you what to do with a minimally verbal, intellectually disabled autistic nine year old who is showing scenes of OCD.  Am I doing the wrong thing to do what she wants?  For right now, I'll risk it, partly just to show her I do understand.  And we'll go from there, playing it by ear, as life with Janey so often demands.