Catching Up

 So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on.  I didn't used to be that way---I'd write multiple entries a week, sometimes.  Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different.  Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up.

One big happening is that Tony got guardianship of Janey, officially.  I wrote about the endless seeming process we had go to through for this.  He finally had the day in court, and after hours waiting in the courtroom to be called (luckily we decided against bringing Janey to court with him, which wasn't required), the judge approved the guardianship without any real problem.  It does have to be renewed every year, because of the medication she takes, but she is assigned an attorney for this, and it shouldn't be as tough a process.  We were adviced just one parent should be the guardian, in most cases, so we picked Tony.  It doesn't make a big difference day to day, as Janey wasn't really apt to make a lot of decisions on her own, but for things like financial issues or health care issues, it just makes things more straightforward.

Another happening---Janey finally started getting social security.  It took over a year for her application to be processed, but she was approved, and gets a monthly payment now---not enough to live on, certainly, but it helps a lot.  We are getting retroactive payments back to her 18th birthday, too, in several installments.  We are using her money for the special food she asks for, and for clothes and pull-ups and so on.  This is the kind of social security for people who will not ever be able to work, and I'm very glad it exists, but if she didn't have a place to live and a family to care for her, it wouldn't go far at all.  But in our situation, it is helping quite a bit---the years since Tony retired have been tight ones financially to be sure.

We are currently in the middle of yet another endless process---what is called the 688 application.  It's the process for getting Janey services when she turns 22, in less than 3 years now.  It involves a referrel from the school, us sending in huge amounts of documents, then in this case, us getting back requests for even more documents, mostly it seems evaluations from all different phases of her childhood.  It's not enough to show she has severe autism---I guess we have to show she's had it all along, or that we didn't just somehow try to game the system by getting one diagnosis along the way and then just coasting along on that, reaping in all the exciting benefits it gave us....  I simply can't understand it can't be an easier handoff from school to adult services.  And from what I hear from other parents in Massachusetts, the services actually available once Janey turns 22 are very limited, even for those with severe needs.

This ties in a bit to one good development.  Janey has started an after school program.  She hasn't been in one for many years, since she was about 8.  This one is especially for people in what's called the transition program, the life skills program in the public schools for people 18-22.  It's 4 days a week, and there is transportation home (without that, we wouldn't have been able to do it, as in the evenings a drive to her school could take up to 2 hours in Boston traffic each way)  On the days Janey goes to after school, she gets home as late as 7pm---that is after leaving the house at 6am!  It took us a bit to decide whether or not we wanted to send her, but what it really came down to was that there just aren't many opportunities out there like this one for people like Janey---a chance to socialize with her peers, to have music and dance lessons, to live more of her life not just being home with us.  From what I hear about what's out there for those like Janey once they are 22, she might have many years of being home with only perhaps a day or two of a program a week, so we want to give her what we can for recreation and time away from her dull parents while she's still under 22.  We hope she's getting adjusted to it---there were some reports of tough days at first, with some crying, but we are continuing to be so impressed with her school and how much they care for Janey, and work hard to make her happy and keep her engaged.  We talked to the after school director the other day, and she was making fried rice with Janey---having realized the key to Janey is plenty of food that's been freshly prepared!

We are very happy with Janey's new teacher for the regular school day, too.  Janey still gets to see her beloved Jamie a lot, her high school teacher, but her new teacher, like Jamie,  is so caring and enthusiastic and just seems to get Janey---it's hard to believe she's had as wonderful teachers as she's had year after year after year.  

Over Thanksgiving weekend, Janey has a tough time.  We aren't sure what was up---if she didn't feel well, if she was confused by the afterschool starting, and then it being a half day before Thanksgiving, then a 4 day weekend---Janey isn't a huge fan of routine changes like that.  Whatever it was, she cried and screamed and was unhappy all day long for four days or so.  It was a horrible flashback to the past, when that kind of time happened so much more.  But it was also a good reminder of how far we have come, that we rarely have that kind of time any more.  Most of the time, Janey is pretty content.  She likes what she's liked for years---car rides, watching Tony prepare food and then eating the food, taking way too many showers, and watching certain episodes of certain TV shows or selected scenes of certain movies over and over and over.  Right now, it's mostly Vampirina, Fancy Nancy, Little Einsteins, Encanto and Toy Story 4.  We are never quite sure why she gets into the shows she gets into, but boy, does she love them once she does.

With Christmas around the corner, I have the bittersweet feeling I often get, but less than I used to.  Janey isn't into Christmas.  She likes the music, but otherwise, she doesn't care---she barely notices the tree, she doesn't generally like presents, she isn't happy with routine changes it brings.  I think I've accepted this, and allowed myself to focus more on the boys for Christmas, even now that they are getting into their later 20s.  It's a little bit of a regret of mine, that it took me this long to really accept that what she wants for Christmas is a day like other days, and we can give her that as much as we can while still making the day special for the rest of us.   I hope that all of you enjoy the holiday season in a way that works for your family.  I hope 2024 is a good year for all of us.  Janey will be turning 20, and I hope to keep writing about our journey with her through her 20s and beyond.  Happy Holidays!  Merry Christmas!  Happy New Year!

Summer update

In no particular order, some updates from our summer so far!

The initial genetic testing came back.  It was the kind of testing that looked for single letter changes in genes, not for larger deleted or duplicated portions of genes.  It showed that Janey didn't have Rett Syndrome, as the geneticists thought she might.  What did come up is a disorder that is hard to figure out the significance of, and which might or might not have anything to do with her autism.  It's a dominant genetic disorder that can cause seizures during sleep of the frontal lobe.  It has once in a while been associated with intellectual disabilities, but not usually to the extent that Janey has.  It can cause other sleep disorders, and she certainly does have very unusual sleep issues, but not perhaps the ones this causes.  The interesting thing is that the testing shows she inherited it from Tony.  Neither of them seem to have ever had seizures, during sleep or otherwise.  I was a bit overwhelmed at the time the report came in and I haven't researched this as much as I eventually will.  It's a very rare disorder---only about 100 families in the world, and we do plan to join a study about it.  But for now, it raises a lot more questions than it answers.

Summer school was...mixed.  The first 3 weeks were great.  Janey was in a sleepy mode, and therefore was more than well rested for school, and seemed to thrive.  But starting with week 4, she went into no sleep mode, sleeping very little each night if at all, and when she was awake, she wasn't in a good mood.  We started getting calls from school every day.  If you've ever been in that place, you know it's very tough waiting for that call, and hearing the latest about what has gone wrong.  I fell into a very low mood for a few days there, remembering all the toughest times.  Summer isn't my favorite time of year ever, and with Janey screaming and crying all day, then heading to school to scream and cry more so we got calls to go get her....it wasn't a good couple of weeks. She was also acting up on the bus to a big extent, and we got to hear about that every day as she got off the bus.  But by the last days of summer school, she had cheered up a bit and the very last day, I guess she was even good on the bus. 

At home, Janey loves to do three things most.  She likes car rides, showers and eating.  We do all we can to give her as much of those three things as we can, but there comes a time around 8 each night when she's had multiple car rides, multiple showers, and she's eaten as much as any person on earth needs to eat in a day (usually very healthy food, but even that has a limit).  When we tell her no more car rides, when we report that the shower is closed, when there is no more food being offered---well, you can guess it's not a happy time.  It can feel very frustrating to try so hard all day long to keep her happy, and then to have her get so angry when we finally just can't offer any more.  I know she isn't really intellectually capable of understanding why we are bothered by that, or that she isn't really being fair, but we are human beings with feelings too, and we can get worn down by her fury.

More and more, we realize Janey really craves, in addition to the three things mentioned above, time to herself, time alone.  And that is one thing we can't really give her, not fully.  When she gets home from a car ride, she likes to play in our long driveway.   And that's fine---as long as we are watching her. We live on a busy street in the city.   She isn't an eloper, and she has never gone into the street, but strangers pass by all day, and it just isn't safe for her to be alone out there. But she tries. She attempts to push us inside the house.  She says "You want to take a shower?", hoping to tempt us inside with what she herself would love.  She sometimes is even more direct, saying "Want to GO AWAY???"  It makes me so sad that she can't have that little thing she wants, to just be alone and play.  We tell her we are just going to be sitting there---we won't cramp her style, but of course that doesn't matter.  When she's in the house, she likes it best if she can be alone in the living room, and we do try to make that happen, but our apartment isn't huge and we do even inside have to keep a  backward eye on her.  I wish she was able to have the freedom she clearly wants.  But I don't see a solution here.

Janey will be 19 in a few days.  It's hard to believe.  In so many ways, she's a delight to us.  Even with my griping here, almost every day brings another great time with her, another funny moment or surprise joy.  Today, Tony took her for Chinese takeout, and they waited in the restaurant for her food.  When someone else's order was called, Janey eagerly jumped up to grab the bag, and Tony had to stop her from walking off with it.  Then she saw someone at a big table that looked like it had lots of room, and she went over to try to sit there.  Both these things were done with her infectious smile and joy in life, and people responded to that, by smiling and laughing and being kind.  There is something about Janey that brings that out, in so many people in so many ways.  It's what gets us through it all.  It's what gives us hope on tough days.  It's been a long, strange 19 years, but boy, does she keep life interesting.

Independence when possible

If Janey were able to tell me what she most wants in life, my guess would be it would be increased independence, and that can be heartbreaking to me.  With her intellectual disabilities and severe autism, she will never live independently, she will never be able to leave the house on her own, she will never indeed even be able to be at home alone for even a minute.  The few times she's been able to express thoughts in this area, she has asked me to go inside while she plays outside.  Even that isn't really possible---we live in a busy street in the city.  We sometimes stand just inside the door, to give her a little feeling on being on her own, but that's the most we can do.

So lately, we've been working on ways Janey can be independent in the areas where it IS possible.  We've found a bonus in this---it makes life a lot easier for Tony and me, and gives us a bit more time to ourselves.  It's a true win-win.

We had a breakthrough a few months ago with the shower.  As you might recall, Janey adores showers.  She will happily take four or five a day.  Once she hopefully starts getting social security, I think most of the money will go to our water bill!  But we have gotten weary of the shower routine, which we somehow assumed we always had to do most of the work for.  Then she surprised us.  One of the those nights when we simply couldn't keep our eyes open any longer, after she had been awake night after night, she got tired of waiting for us.  We awoke to find her soaking wet, having given herself a shower.  We rushed back to turn off the water, but otherwise, all was mostly fine.  

We had no idea Janey knew how to turn on the shower.  It's a little complicated, like everything else in our old house.  And the next day, when she asked for a shower, we told her to start one herself, to try to see how she did it.  Well, she just stood there.  We decided to wait it out, and finally, after 38 minutes (we kept track), she got into the shower and reached up and turned on the water.

So---the jig was up.  Now, when she asks for a shower, we tell her "Go ahead!  Take a shower!"  And she does.  It sometimes takes a very long time for her to do all the steps, but she's happy, going at her own pace and working toward what she wants.  I still wash her hair when it needs washing (maybe someday we can figure that one out, but not yet!) and we block access to the shower now at night, to avoid water being left on for hours and overflowing (turning OFF the shower isn't in her toolkit yet), but during the day, if she wants five showers, she gets them, and we get a little break.  We check on her a lot, we make sure all is well, but mostly, she does it on her own.

Another breakthrough, one that took Tony and me stupidly long to figure out, was TV access.  We have an Amazon Fire system to access the streaming services we have, and even for us, it's not the easiest thing to figure out.  For Janey, despite us trying very hard for years to teach her, it seemed impossible for her to learn.  So when she wanted to watch a show, she'd come to us with the remote and say "I need help!"  Which we were happy to do---for the first 5 or 10 times an hour.  The problem is that she doesn't generally just watch a show or movie all the way through.  She like the intros or certain scenes, something she can do easily on her phone and tablet, but something beyond her on the "big TV" using the remote.  

Finally, we realized that all the streaming services can be accessed by computer.  Janey uses a mouse with ease.  I'm not sure why she can use a mouse but not a remote, but I think it has to do with the visual cue of the caret on the screen.  Our TV is set up so it can also be a computer monitor, with the push of a button.  So---we "lost" the Fire remote.  It stays lost at any time Janey is home.  If she wants a show, we tell her "You know how to do it!" and she does.  She switches easily between services and YouTube and rewinds and repeats to her heart's content.  It was a rough few days at first, with many hours of "I need help!", but when she realized the remote was "lost" for good, she adjusted.

This is an example of something that we should have figured out years ago, and you might wonder why we didn't.  I think part of it is we just get tired.  It can feel easier in the moment to once again put on a show for her, to say "Okay, one last time!" when we know it's not one last time, than to take the time to figure out how to change things up.  I have a feeling most of you caring for someone like Janey get that.  Constant tiredness, constant vigilance---those are not friends of innovation.

The third area we've made some progress with is Janey being awake at night.  No progress in keeping her from BEING awake at night---we've realized that's probably not going to happen.  Janey goes in cycles.  For a few weeks, she sleeps more than most people---sometimes going to sleep soon after coming home from school and sleeping all night.  Then there might be a few days of near typical sleep.  Then....the few weeks of very, very little sleep, where she can be up nights in a row with NO sleep, or sleep only a few hours a night.  

These times are currently the hardest part of being Janey's parents.  It's no coincidence that being prevented from sleeping, being woken all night, is sometimes used for torture.  When we are up all night with Janey, we simply don't function at all close to normally during the day.  We are in a constant haze.  So, figuring out the nights is a priority.

We are lucky in a few things.  Janey is not an eloper.  She doesn't try to leave the house.  Over the years, we've childproofed, or Janey-proofed, so that she can't get at things that aren't safe for her.  But still, when she didn't sleep, we didn't sleep.  Part of that was just habit---even though she now was pretty safe at night awake on her own, we couldn't relax.  And partly, it was because if she ran into something she wanted we couldn't help with, she'd wake us up.

This problem isn't solved, but it's better.  We have started setting things up for Janey to access in the night.  Her phones and tablets are always accessible and charged, and we finally figured out (thanks to Freddy, our in house IT guy) how to take the passwords off them safely, so she doesn't need to wake up to constantly reinput the passwords.  We started leaving food Janey likes front and center in the fridge, leftovers for her to find.  She can get herself a midnight snack if she wants.  And now, we can better doze as she's awake.  Not totally---she can be loud, and she still wakes us fairly regularly, but our sleep (and by our sleep I'm doing a disserve not to say Tony's sleep, as he has always done the lion's share of the night shift) is more than it used to be.

It's striking me that it's fairly little things like this that make life easier---finding small ways to let Janey be the adult she is, and let us be the tired late middle aged people we are, letting us co-exist in a way that works a bit better for all of us.  There's areas that can't be changed---Janey is not going to learn how to drive so she can take herself for the car rides she so craves---but at times, it feels like we are making progress in figuring out, after 18 years, this unique lifestyle.

Cabin fever for a year

 I woke up this morning and thought "Great---another day".  That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough.  And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.

Janey hasn't been happy.  School is complicated and off and on, but hopefully she'll be going more regularly soon.  However, this past week was vacation week.  Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?"  In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible.  Janey is bored.  She has had a life that's been incredibly limited for the past year.  We all have, but she has far less resources to keep herself happy and entertained.  She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row.  We try, of course.  But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger. 

The list of what Janey likes to do at home is very, very limited.  She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed.  Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help. 

Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her.  We are supposed to stay there for about 30 seconds, then she has us get up.  About 5 minutes later, she gets up herself and it all gets repeated.  If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse.  If we refuse all day, it lasts all day.  Needless to say, we give in after a while.  It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual.  

Car rides---her favorite thing on earth.  Every morning, from the second she wakes up, she asks for a car ride.  She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on".  We explain, as patiently as possible, why a car ride can't happen that very second.  Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted.  No reason works, of course.  If she wants a car ride, she wants a car ride.  The car rides are rides to nowhere, rides around routes Tony has figured out over the years.  They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!"  In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.

Eating---Janey loves to eat.  Luckily, Tony loves to cook, and he's wonderful with her eating.  She eats a great variety of foods, mostly healthy. But her greatest love is salami.  She eats salami completely without a stop button.  We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey.  But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.

And TV watching.  Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4.  We know them both by heart.  We are so tired of them we can barely take it.  Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less.  If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.

A pretty good movie, but boy, are we sick of it

We try hard to make Janey's life more interesting.  We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor.  We can, with much trial, get her to do these things for maybe two or three minutes.  Then she is done, and nothing on earth can make her do them longer.  

In normal times, we are able to mix things up.  There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic.  But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her.  I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.

The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter.  But the truth is---we are not doing well.  We are really not doing well.  We are a mixture of bored and frustrated and tired and concerned and overwhelmed.  This feels endless, and at times, impossible.

Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going.  People doing whatever needs to be done to get this mess under control will be a help.  But I feel for the long term consequences.  I fear for all the Janeys in the world.  I fear that it will take many years to recover from this horrible year.  I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't.  I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.

What drives us up a wall

After many years of this autism parenting gig, we can be pretty unfazed by most behaviors Janey shows.  We get the reasons behind them, more and more, we understand they are ways for her to communicate, or sometimes, we know they are just teenage behaviors, not autism behaviors, and we try not to take them personally.  But we are human beings, as all of us are, and there are still things that Janey does that are highly trying, to say the least.  Here's some of them...

Screaming

When Janey is very displeased, she screams.  If you've never heard her scream, you probably will have a hard time picturing just how loud it is.  I'm pretty unbothered by most loud noises, but when she screams right in my ear, it's painful.  She screams so loud that I'm very sure people on the sidewalk and perhaps even people in other states can hear her.  It's an incredible scream, and nothing we say or do seems to stop it.  I think she's figured out it's a weapon---something she can do that we can't do a thing about that certainly gets our attention.

"I need help!"

Of course, if Janey really needs help, we are happy to help her.  But usually, this "I need help!" doesn't really mean she needs help.  It means she wants us to stop whatever we are doing and participate in a ritual she wants performed.  Often, it's changing a TV show.  If she really couldn't change the shows, that would be one thing.  However, she can change shows with complete ease now when she wants to.  The other night, as Tony dozed and I watched from the other room, Janey switched shows around for hours, going from one streaming service to another, switching the TV into internet mode and back, rewinding and fast forwarding, changing shows probably a hundred times.  When I came into the room, though, suddenly she needed help doing the most basic TV action.  I get it...she wants or needs attention, or she somehow can't access the part of her brain that knows how to make the changes.  But that doesn't make it less irritating at times, especially when we hear the "I need help!" phrase every minute for hours and hours.

"You've helped me, now go away!"

This comes up most when Janey asks us to snuggle her on her bed.  What this means is for us to cover her with her comforter, get her pillow (the comforter and pillow are always thrown onto the floor by her when not in immediate use, no matter what), lie down with her for a millisecond, and then..."want to go away?"  Once we've done our part, we are no longer supposed to be there.  Which I get---a 16 year old girl doesn't want her parents around all the time.  But after a few minutes on her bed, Janey will get up, watch a little TV or eat a bit, and then want, once again, to snuggle on the bed.  And we are supposed to, again, lie down with her for a second and then go away.  Often, this happens after a night when she didn't sleep.  Once we get on her bed, we want nothing more than to just close our eyes for a minute and rest, but no---we must hop back up and wait for the next summons to lie down.  If we refuse the routine, which we often try to do, the scream comes out, Janey is in a mood probably for the rest of the day, she makes the demand far more often...it's usually just not worth it.

"Go for a car ride?"

Janey's favorite thing on earth is going for a car ride with Tony, a car ride usually to nowhere, just a ride around listening to music.  Tony takes her for rides like this two to three times a day, every single day.  The rides are around an hour each.  So she gets LOTS of car ride time.  But it's never enough. Often, the minute they are back in the driveway, Janey immediately says "Go for a car ride?"  There's no credit for the car ride just completed.  And the car ride requests are not changed by weather conditions, the fact it's the middle of the night, or even the rare occasions when Tony has taken the car elsewhere and there is literally no car to have a ride in.  And like the other requests, us saying no brings on, always, a predictable series of reactions---screaming, arm biting, sometimes throwing things or smashing her fist into things.

"Music please, music!"

Janey loves music.  She always has.  But she doesn't just like any music.  She has very specific tastes, tastes that change from time to time.  Like any of us, she gets sick of certain songs after a while, or discovers something new, or just wants something different.  Unlike the rest of us, she often isn't able to tell us just what it is she wants.  This comes up the most in the car, and affects Tony far more than me.  Tony will be playing Sirius Radio, or Accuradio, or music he has on a thumb drive, and Janey won't like the song that's on, and she'll say "music please, music!" which means "change the song"  If Tony doesn't immediately comply, she repeats the phrase, much louder.  If he doesn't comply after that, she will kick his seat, scream, generally freak out.  Some days, she's listen happily for a long time to whatever comes on (and Tony does his level best to play playlists she likes---her favorite by far is any British Invasion music), but other days, the "music please" is continuous, stopping songs after just a second or two, over and over and over.  I think that's when she wants a certain song, but can't express it.  So she just hopes it comes up, and of course, with many thousands of songs out there, it's not likely to.  We've tried having her control the music via smart phone, but she won't do it.  It's Daddy's job.

There's more I could add to this list, but those are the big ones.  And thinking about them, they are much more annoyances than things that used to happen.  For the most part, she doesn't lash out at us or herself like she used to.  There can be hours and sometimes days when she's perfectly happy, and none of these behaviors show up.  But I'm not going say it's easy.  I'm not going to lie.  It's still tough, in a lot of ways, being Janey's parents, and tougher this year than ever before, without school as a respite for us and a change of scenery for her.  

I'd be so interested to hear what would be on all of your What Drives Us Up A Wall lists!

Middle of the Night Thoughts

No, Janey's not awake.  It's just me awake.  I've been having a lot of trouble sleeping the past few nights.  Thoughts and worries swirl around in my mind and keep me up.

Every day around 4, the new numbers come out for Massachusetts---how many new cases of COVID 19, and how many deaths in the past day.  Today, the death number was 252----the highest yet.  Somehow, that really hit me.  I kept thinking---what if a tornado, or hurricane, or blizzard, or flood hit our state and killed 252 people in a day?  It would be something we'd never forget, a horror, something we'd still talk about many years later, like the Worcester Tornado or the Blizzard of '78, weather legends in Massachusetts.  It feels in this case like a terror happening off camera.  We hear some stories, but mostly, it's unseen---deaths that are all someone's loved one, someone's parent or child or sister or brother, but that we only know as a number.  It's terrifying.

And of course, I fear most of all that it will hit us.  How could either Tony or I do the job of being Janey's parent without the other?  Or what if Janey got sick? Or the boys?

We don't go anyplace.  Not at all.  Tony takes Janey for a car ride to no-where a few times a day.  We play with her in the driveway.  She hasn't set foot outside our house, driveway or car for over a month.  She would not wear a mask.  She wouldn't wear a mask when quite literally her life depended on it, in the hospital after her appendix burst.  She touches everything---when I take her for a walk, she runs her hands along walls and fences.  It is not safe for her to go out.  Even outdoor places in this crowded state are filled with people, many not wearing masks.  So we stay home.

Janey is still doing remarkably well being at home.  She seems to be thriving.  She watches videos, watches Tony cook, eats all day (luckily, she loves healthy food), listens to music, runs around in the driveway.  Every day is quite similar, but she doesn't seem to mind.  It's a low stress life for her.  She doesn't really understand at all why we are home, and that is probably good.

A few times a week, Janey has a short, maybe 20 minute, Zoom meeting with her teacher or with her speech or ABA therapists.  Janey tolerates this, and even seems to enjoy it for a few minutes at a time.  However, starting next week it's going to be every day, for 2 hours.  I have very mixed feelings about this.  I know it's being done because special education students are not able to access the learning that other students are currently doing---online resources, worksheets, homework.  They need direct teaching.  But I can't picture Janey or most of her classmates doing very well with that much Zoom teaching time.  It's not that she can't watch a video for that long---goodness knows she can---or that her teachers aren't doing a fabulous job working on ways to engage her---they are amazing.  But it has to do with Janey just not quite getting it.  She gets school.  She's been going to school for a long time.  She knows how that works.  But someone on a screen talking to her and listening to her and expecting her to respond?  I think in her eyes it's some kind of enhanced video, one with a cast of people she happens to know.  It's fun for a few minutes, but not for extended periods.

However, it's not like there are really any other options.  School can't be held in person right now, and everyone is doing the best they can with that.  It's not easy for anyone.  In some ways, it's probably easier for Janey than for a lot of kids. Her lack of understanding of the crisis is a protection from worry.  Of course she has peers she likes at school, but it's not like I would have been at 15---absolutely crazed being away from my friends for this long.

What really keeps me up at night is how this is all going to play out long time.  People seem more divided than ever.  Instead of this pulling us all together, it seems to be pulling people apart.  That's crazy to me.  It's not a matter of politics here.  A virus has no politics.  But fear can cause divisions, anger, irrationality.  I can handle that.  But how I fear for Janey, and for all those out there who will always depend on others.  She needs a world that is secure enough to leave people feeling they can help others.  She needs a world that cares about people, not about the latest political feud or scoring points or getting elected or re-elected.  I don't think the extremes on either side of any political rift really understand that.  She literally needs someone to watch over her, and she always will.  And I can't sleep, because I don't think the world sees her, or all those like her, when they bicker and argue while in one day, in one state, over 250 people died.  God help us all.

Lip Gloss and Out of Place Cats

I went all of January without writing a post!  I know I write a lot less than I used to.  I think about posts I want to write all the time, and compose them in my head, but actually sitting down and writing doesn't seem to happen as often as it used to, partly because as Janey gets older, things are more stable.  There is less drama to write about.  But I know that as she is getting older, many of the people who read this also have girls getting older, and I want us all to still share our journeys, so I very much doubt I'll ever stop writing completely!

The title here comes from an interesting insight I got into Janey last week.  Her class went on an all day field trip to the mall, and her teacher asked us to send in some money in case Janey wanted to buy something (and also for lunch).  My guess would have been that Janey would have no interest in buying anything non-food---she usually doesn't.  But when she got home, we found a variety pack of lip gloss in her backpack, from H&M.  We were quite surprised!  Later that weekend, her teacher wrote me a note to say that as soon as they walked into the H&M, Janey picked out the lip gloss.  The teacher asked her a few times if she was sure she wanted it, and indeed---she was sure!  They helped her put some on after buying it, and reports are that Janey was delighted.

I love finding out in ways like that what Janey likes.  I don't wear any makeup and really never have, so Janey hasn't been exposed to much at home.  It's so cool she even knew what it was, and that, as it typical for a 15 year old, she had an interest in it that wasn't something she learned from her mother.  I often think about how much of Janey's life is controlled by others.  I guess at a lot---what she wants to wear, how she wants her hair, where she'll enjoying going---and she lets us know if we are on-base a little, but I think often we only really get a message from her if she dislikes something very much.  I would love to know what clothes she would LOVE, or what activities she would adore.  It's one of the parts of her difficulties in communicating, or our difficulties in finding ways that work to communicate, that makes me the most sad.

The out of place cats?  Janey likes order.  She likes things to be where they are supposed to be---remotes lined up in a row, shoes with the left on the left and the right on the right, unused lights or TVs turned off, furniture never moved.  This need for order extends to living beings. The cats frustrated her constantly with their randomness.  They show up when they feel like it, disrupting symmetry she feels should exist on the couch or floor.  Our older cat, Tommy, spends much of his time now in the bathroom, sleeping.  But tonight he ventured into the kitchen, and Janey immediately noticed him and tried hard to push him back into where she felt he should be.  We stopped her and tried to explain, as we have a million times, that cats do what they want to do, but it's pretty futile. 

We as humans have learned to give Janey the order she needs. It makes things a lot easier.  But at times, as the years go on, it wears us down, to be brutally honest.  For example, the living room, when Janey is home and awake, belongs to her.  It's where she watches her videos and does her routines---rearranging things, checking thing, pacing and jumping and laughing.  But we don't have a huge amount of living space, and Janey doesn't tolerate much intrusion on her domain.  In the car, the music is Janey's choice.  We listen to what she wants to listen to, and change songs when she says to.  What the rest of us want to hear doesn't get heard.

I imagine someone reading that last paragraph who didn't know Janey or who didn't have their own child like Janey would have one of two reactions.  Many people might say "Those parents need to get control back!  They are giving that girl way too much power!"  Or, conversely, they might say "Why is that mother complaining about the small stuff?  Didn't she just talk about how little Janey can say what she likes?  Doesn't she remember how hard things were in the past?"

To those who might say Janey is being given too much control---well, that has been a choice.  We made a choice to do whatever we could to give Janey more happiness.  She was not very happy for many years. This made our lives hard, but far more importantly, it made her life hard.  There is still so much in life Janey can't control, can't completely understand.  There is much in life she isn't going to be a part of.  So we made a choice to let her control what she can control, to let her enjoy those things she most loves, her movies and her music.

But to those who might rightfully ask "well, then, why are you complaining?"---well, I am not a saint.  Sometimes, Janey's needs wear us down.  They wear us down because there are no breaks, no credit saved up.  We can put on the songs she wants a thousand car rides in a row, and then one day we might really, really want to hear something we like, and if we insist, Janey melts down.  Badly.  And once she melts down, her mood can be affected for literally weeks.  It's like her world starts to feel out of balance, and it takes a long time for it to feel right again. 

If you don't have a child like Janey, you might be thinking "She'd learn in time!  She just needs to learn that she can't always have things her way!"  To those hypothetical people thinking that, I invite you to read the blog entries about Janey from about ages 5 to 10.   Those were the years we gave their wise advice a try.  Those were some very tough years.  We tried, for many years.  It was a failure.  Janey was very unhappy, and we were very unhappy. 

So, the conclusion, I guess, is that we as Janey's parents can live with sometimes feeling fed up.  We can stand to put her happiness first.  It's what we have chosen.  However, I'm not going to be afraid to admit it is hard.  I don't think I'm doing Janey a disservice to say that.  I think I'd be doing a disservice to anyone reading here to pretend it's all easy. I know many people have told me they feel less alone knowing that there are others finding this whole special needs parenting gig hard at times.  That doesn't mean we don't adore our children. That doesn't mean we don't value them, or that we won't do whatever it takes until our last breath to make their lives as meaningful and happy as we can.  It means we are human beings, doing the best we can.

Freddy's college graduation, and why I'm not there

Today, my younger son Freddy graduates from Skidmore College with a degree in computer science.  It hasn't been the easiest road for him, and I am incredibly proud of him.  And I am also very, very frustrated, because I can't be with him.

Most days, I keep a positive attitude.  It's important to me to do so.  Janey means the world to me.  I love her more than I can possibly express. She has brought us so much joy.  That being said, there are times when the whole autism parenting life is so tough that I am overwhelmed completely.  Today is one of those days.

There is no-one who can care for Janey today, to make it possible for Tony, William and me together to be at Freddy's graduation and celebrate his success.  There is no respite---not on regular days and not on special days. There are several people who would have loved to be able to watch Janey, but that just were not up to the task, and honestly told me so.  I appreciate that.  The last thing I would ever want is someone caring for Janey that would be overwhelmed by doing so.  There are other people who would have been able to care for her but that live far away---I'm thinking of many of you!  But in reality, there is just not any respite.  Even today.

We thought about taking Janey and all going.  But a quick think-through of that killed that notion.  Janey would last about 5 minutes at most at the graduation. Then, one of us would have to take her outside, walk around with her. This would keep her happy maybe for 10 more minutes.  Then, she'd be upset, screaming.  The person watching her would, to say the very least, not be having a good time.  The family inside at graduation would not be able to concentrate and honor Freddy.  They would be thinking about how it was going with Janey.  Or, we could have gotten a hotel room for a few nights, to have a place to stay with Janey.  If that hadn't been extremely expensive (it's racing season in Saratoga Springs, and even a very cheap hotel, especially on graduation weekend, is insanely high priced), it still would have resulted in a long period of time in a room trying to keep Janey happy, and not seeing the graduation.  If one of us wasn't going to see the graduation anyway, it might as well be at home, with the resources we have here.  Tony missed Freddy's high school graduation.  At that time, Janey was in the hospital recovering with many complications from her burst appendix.  So---it was his turn to get to go to the graduation.

And I'm here, at home.  And Janey isn't happy.  She wants to go for a car ride.  I have taken her outside repeatedly to see there simply isn't a car here to ride in.  That doesn't matter.  If she wants a ride, there should be a car.  She is miserable.  There is no explaining to her that it's Freddy's day.  That is not something she understands.  She repeatedly says to me "Put on shoes!"  "Get jacket!"  "Get pocketbook!".  She tries in vain to get me to see that she needs her car ride.  And I am tired.

I've been sick for the last week.  It's a very slow recovery.  But like the car, that doesn't make a difference.  Janey doesn't get I'm sick.  I am exhausted.  And realizing, for the millionth time, how lucky it is that Tony is retired now.  We are broke, and we probably always will be from now on, but there really wasn't a choice.  Neither of us were going to last with him still working.  The years of little sleep and little down time added up.  It's incredible, still, that the two of us at times can sit down and watch a TV show alone, while Janey is at school or asleep.  And if this is life from now on, so be it.  But on days like this, it is hard to not reflect on the toll autism parenting has taken on our lives.  NOT that Janey has taken.  That autism in her particular form has taken.

I don't have solutions.  In thinking about writing this post, I wanted to close with ideas for making things better and easier for Janey and for all of us.  But I don't know how.  It would take an overhauling of our whole society, and at this point in time, that's beyond a pipe dream.

So, I asked myself, why write about this at all?  Why upset those who rightfully might feel that I should not explore the negative side, the negative feelings that this day has brought to me?

And I answered myself---well, why do I read memoirs?  Why do I avidly read about other lives?  For one of two reasons.  I read to hear about a life unlike my own, to better understand what it would be like to be someone else---someone affected by war, or by blindness, someone who grew up in a very different culture or family, someone living a life I'm not living.  I write to share our lives with others.  The second reason I read memoirs is to read about people living a life LIKE my own, to feel less alone.  That is the second reason I write here---because I know I'm not the only one living this life, and I want to be honest about my life to let them know they are not the only one.

All my love today to Freddy, my graduate.  I know you understand why I'm not there, but I hope you also know how much I wish I could be, and how much I love you, and William, and Janey.  Always.

Frederick David Amara, my dear son

Nana and Grandpa at the hotel house

Janey at the cheese and cracker reception time

This past Saturday, I realized how very long it had been since Janey had seen my parents.  I last saw them in October, when I went up there for a few days, but for Janey, it had been almost a year.  They used to drive down here from Maine for the day, a drive that is almost 4 hours each way, but as they get a bit older, and after my father's accident falling from a ladder, they can't make the trip as easily.  On the spot Saturday, I decided that despite all that was keeping us from getting away, we'd go spend a couple nights in Portland, half way in-between us, and have them come down for the day to see us at our hotel (Janey always calls them "hotel houses").

Breakfast, which Janey did not care for

In general, Janey likes trips.  That is, she likes them under her own terms.  It must be her music in the car, music that she wants us to change constantly.  Once we get to the hotel, except for car rides, she doesn't want to go much of anyplace.  Going away with her is not really a get-away or a vacation as just more a change of scenery.  It's great she doesn't mind being away from home.  But it's also harder to keep her happy in a hotel.  At home, if we have to say no, she often screams.  In a hotel, you really can't have someone screaming the way Janey does.  We can't stand our ground unless we want complaints and the front desk calling us to see if everything is okay, something that has happened a few times.  So, we keep her happy.  On this trip, it meant letting her take about 10 showers, having her play her iPad at full blast on YouTube Kids with the same videos 20 times an hour, and working on keeping her calm when she woke up at 2 am the 2nd night.  It was relaxing to come home.

Janey checking out a water feature in the lobby

However, it was worth it to see my parents.  We did manage a lunch out at a buffet, sort of a more downmarket Old Country clone.  Everyone found plenty to eat.  We got pizza from the hotel restaurant at night.  We exchanged Christmas presents, which we had not been able to do any sooner, and we sang some Christmas songs---Janey's favorite part of Christmas.

My parents commented on how clearly Janey sings, in contrast to her speaking, and that made me face something I haven't faced much.  Janey used to speak very clearly, when she did speak.  She doesn't any longer.  Often, no-one can understand what she is saying but Tony and me.  I hate thinking it, but it's become pretty obvious her speech is getting worse over the years.  But the singing---still lovely.  I sang the beginning of lines from carols, and she finished them, perfectly.  Hearing her sing parts of "O Holy Night" brings tears to my eyes every time.

Janey sees Nana, as Tony looks on!

During the car ride back, Tony and I talked about some small changes we are going to make with Janey.  For about 4 years now, we have been pretty much doing whatever it takes to make her happy.  Overall, it's been a huge help in making all of us happy.  But lately, she has become more frantic in her demands, and she doesn't seem happy even when she gets what she wants.  The big thing that has become almost impossible is the music in the car.  Janey will not listening to about 95% of the songs we put on, songs she has previously liked.  She just constantly says "Music please, music!" which means change the song.  This makes it very hard for Tony to drive when he's driving alone with her, because if you DON'T immediately change the song, she screams, sometimes kicks the seat, and makes it very hard to concentrate.  We decided on a new rule.  We'll change music only after listening to the rest of whatever song we are hearing.  We explained this to her, and then put the rule in place, and after not much push-back, she seemed to get it.  She didn't like it, but she got it.

Janey listening to Grandpa!

We decided to put a similar rule in place about putting on TV shows and videos, once we got home.  Again, she wasn't pleased, but she seemed to understand.  We am always balancing her need for control with Tony's and my need for sanity.  We are all in this for the long haul, and we as parents were starting to quite frankly be at the ends of our ropes.

Being away, even for a few nights, can give some new perspectives. They aren't always easy things to face.  We need to try to figure out Janey's speech regression.  We need to take back some control of routines that have started to make our lives very tough.  We need to find a way to see my parents more, while still being around for Tony's brother, who has been in and out of the hospital for a very long time now and who has severe health issues.  We need to take a hard look at our finances, which with Tony's retirement have become much more of an issue, making even 2 nights in a hotel a luxury we can't often do.  We need to have a life that better balances Janey's needs with our own.  None of these are easy tasks.  But they are necessary.

Autism Non-Awareness, Human Acceptance

Today is World Autism Awareness/Acceptance Day.

Last night, as I spent time with Janey as she went to sleep, I thought about this day a lot.  I thought about it, as people most often think about things, from a very personal viewpoint---that of Janey, and how best to help her through the world.  And I realized, in a lot of ways, helping Janey be accepted, in a full way, involves something that is the opposite of autism awareness.

Taking a step back, I'm thinking of my own view of politics, or really, the larger world.  For the most part, I completely ignore politics.  When I don't, I become easily overwhelmed.  There are so many aspects to it, so many personalities and philosophies and emotions and ideas.  And I can affect all of it very, very little.  I vote, and then I probably actually bury my head in the sand.  I do so not out of apathy, but because I know what I can do and I can't do.  I can't change the world, not in my current life.  But I can do the best I can for my own family, and so I look inward.  I try my hardest to be the best mother I can, to have the best marriage I can.  I don't succeed, of course, but I try.

The wider world of autism is in many ways like politics.  It's a huge world, and a huge spectrum.  Sometimes I try to look at it all, and take it all in, and I am overwhelmed.  As I sometimes see little of my own life in political life, I sometimes see little of Janey's life in my views of the wider spectrum.

And sometimes, trying to think about autism as a whole keeps me from focusing on Janey.  I start to feel paralyzed, in writing here and in making decisions for her.  When I look at the media for views of autism, I see little that seems anything like Janey.  The spectrum is so wide that there is almost no intersection between lives like that of The Good Doctor or Temple Grandin and that of Janey.  And I say that not talking about high or low functioning.  I am talking about personality, strengths, interests.  Janey is not part of a group.  She is herself.

What I have found, over the years, is that people who most accept Janey are people who most know Janey, as a person.  In a big way, that includes us, her close family.  I don't look at Janey thinking about autism, 99% of the time.  I look at Janey as my daughter.  Like every other person on earth, she is a mixture of many things.  At times, she is a delight beyond imagining.  At times, she drives me out of my mind.  I can say exactly the same things about her brothers.  Her autism doesn't make her who she is, any more than Freddy's asthma did or William's premature birth did.  It has affected her life, sure, very much so, but it's not the essential Janey-ness of her.

I've had on occasion over the years a telling reaction from people meeting Janey for the first time that knew ahead of time she was autistic.  It's a surprised reaction, followed by them saying "But she's so beautiful!" or "But she is so happy!".  Or, a few times, "But she's, well....(and here they don't use the forbidden terms but say in their own way that she's intellectually disabled)"  These people were, before meeting Janey, what they considered aware of autism.  They had awareness that led them to believe Janey would somehow look different than the norm.  They are surprised when they see a lovely, happy girl.  Then they are surprised she doesn't talk like a doctor or a PhD, that she isn't quoting train statistics or holding court on some focused high level math concepts.  Autism awareness has failed them.

To accept Janey fully, to accept all of our girls fully, and in fact everyone fully, we need to see them with non-pre-aware eyes.  We need to see them as they are.  Janey isn't an example of anything.  Janey is a person.  Like everyone, she has some special needs, in the most literal sense of that word, and her particular special needs are ones that society doesn't readily provide, so we need to help her more than we would others.  But if we look at her with fresh eyes, those not pre-filtered with autism awareness, we see her---a 14 year old girl, one who loves music, loves car rides, loves dancing, loves running around in fresh air.  One who doesn't communicate verbally very effectively, one who needs help with many life skills, one for whom academic skills are at a very low level.  One who delights those around her with her enthusiasm for life, one who is the most adventurous eater I know, one who last night hugged me tight and said "Love you!"

Without the filter of "awareness", without the filter of autism, Happy Acceptance Day!

How Janey would tell the bus story

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

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

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

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

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

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

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

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

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

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

Summer Summary

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

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

Janey awaits the bus

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

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

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

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

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

Reflecting on progress at the Whole Foods

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

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

Janey at the Whole Foods

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

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

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

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

Janey's reserved look, like at the Five Guys

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

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

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

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.

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

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

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

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

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

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

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