Summertime Blues

 It's been a rough start to the summer with Janey.  We are seeing behaviors we haven't seen for years---long days of screaming, lots of arm biting which comes close to breaking her skin, crying for hours.  It's not every minute of every day, and there have been a few better days mixed in, but overall, it's certainly been a tough time.  

We really have no idea what is causing this unhappiness.  Some of it is probably just the change in routine that the end of the regular school year brings, but it hasn't been this extreme other years.  Janey had quite a good year of school, overall, and most of the time enjoyed the new after school program.  I imagine it was hard to have it all be over for the summer.  We tried hard to make the weeks before summer school fun for her.  We did a trip to Maine to stay in what she calls a "hotel house"---usually something that makes her very happy, but this trip was mixed to say the least.  It was very, very hot in Maine, and we mostly had to stay in our air conditioned room.  Janey liked the unlimited showers in a nice big hotel shower, but off and on, she screamed and cried loudly.  

During one of these screaming sessions at the hotel, as we tried everything we could to calm her down, I had a horrible flashback to the time we were in Children's Hospital waiting for a placement at a psychiatric facility, when Janey was 10.  It felt suddenly so much the same---being in a room we really couldn't leave (this time due to 100 degree heat), having to keep Janey quiet (this time because we didn't want to disturb other guests or get that fun call we've gotten a few times from the front desk asking if everything is okay), not being at home where we have more resources to help her---it was awful.  I felt like I was in despair, a feeling I haven't had because of a situation with Janey for a long time.  

The picture shows one of Janey's happy moments at the hotel, of which there were a few, but moments like that lately seem to change on a dime.  

Now Janey is in summer school, which is never her favorite part of the school year.  She goes willingly, as she always does for school, but most days she is getting off the school bus and breaking down.  We always consider just not sending her to summer school, but....

The other big issue is the one that isn't new---Janey's sleepless nights.  The past week, there were 3 nights out of seven that she literally didn't sleep at all.  Needless to say, Tony and I didn't get much sleep either.  After a night like that, we are left feeling barely human.  Any respite at all is so desperately needed that any thoughts of not doing summer school are put aside.  We put her on the bus and collapse.  She, meanwhile, usually seems to feel just fine without any sleep.  Sometimes her days after not sleeping are her better days.  We very much need to try to figure out why her sleep is so variable.  We do know that genetic testing showed she has the genes for a very rare sleep disorder---one that only about 100 families in the world have---but Tony also has the gene, and he doesn't have the sleep issues she does.  It's a rare enough disorder that there isn't much information on it out there, and we have been putting off joining a study about it because, well, we are just kind of overwhelmed and not really ready for all kinds of medical tests that would involve, but we probably need to join the study, at least to try to understand what's going on more.

On the uncommon days lately that Janey is happy, we have seen something we often see when she's been having a very tough time---improved talking.  It's strange how that seems to follow or be interspersed with tough times.  She's asking for specific songs she wants to hear by name, she's using a little bit longer sentences, and she's doing something new.  When she asks me something like "want to go for a car ride?" and I say "you need to check with Daddy about that" (I don't drive anymore), she will say something like "I will ask Daddy 'Daddy, want to go for a car ride?'"  She rehearses what she will say.  She's done this 5 or 6 times, and it really blows me away.  It's like a little glimpse into her thinking, something we so rarely get.

I hope these tougher times are just an blip, that the easier times we've had for a while now will come back.  Like the flashback in the hotel room, it's so easy to fall right back into the old feelings of hopelessness when faced with screaming and crying.  And it's so hard to have the energy to do all we can to keep her happy when we don't get sleep.  Hopefully, as this hot and restless summer bears on, things will get easier, for us but most of all for Janey.  

Never Again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

How would we have done it?

One phrase that I think most families with special needs children don't like is "How do you do it?", sometimes phrased as its twin "I don't know how you do it!"  We know the phrase is usually meant in the kindest of ways, and that it's an acknowledgement of some of the struggles our families can face.  But it can feel hurtful in a couple ways.  One is that it makes it seem like our child has created a situation so difficult that others can't even imagine what it would be like to live our life.  Another is by saying, in a way, that we ARE doing it, by making us somehow separate, set apart, somehow as a family unit handling it all ourselves, and not in need of help, due to our superhero status.  Both views of our families are untrue and unhelpful.

That being said, lately I've been thinking a version of the "How do you do it?" myself.  It's in the form of "How WOULD we have done it?"  How would we have handled this pandemic, this lack of school, this isolation, during what I always think of as the Tough Years---approximately from when Janey was 5 until 10?  Those years...wow.  Those were the years in which an inclusion school which aimed to include all special needs students realized they were not up to including Janey, and then, while in the autism program she moved to, she was so unhappy and angry that the day came that I got the call that she wasn't even safe to go home, that we needed to come to the school to go with her by ambulance to the emergency room, the start of an ordeal which include six horrible days at Children's Hospital and 3 weeks of Janey being in a psychiatric hospital.  Those years featured many, many days where Janey screamed all day, literally, days when she bit herself hard, days when she cried heartbreaking tears for hours, nights of her fury and sadness that seemed like they would never end.  But during those years, there was school.  We had about six hours a day when we could sleep (or often, just I could---Tony was working, most of that time at a job an hour from home, and how he ever lived through those years I'll never know), recover, breathe, know that she was cared for.

But what if the pandemic had been during those years, and there was no school?  I think about that all the time, and I truly wonder how we could have done it.

Of course, the thing is, lots of other people with children with severe autism are living through those tough years right now.  And I think about them, all the time.  I think about how it must feel to have a child so desperately unhappy, and to be trying so very hard to help them, and having absolutely no respite---no school, no activities, no nothing.  I think of them trying to think of ways to fill the days, and to get some rest.  I think of the siblings, trying to learn at home in a household that might be often filled with screaming or hitting or crying.

If COVID-19 had happened during the Tough Years, I have to say honestly that I would have sent Janey back to school the second school was open, even if I wasn't sure it was safe, even if I had huge fears about the virus.  I would have sent her because I would have known that we simply had to---in order to stay sane---not just us as parents, but her too.  I would have taken the risk, the possibility of sickness weighed against the absolute knowledge of what more time at home would be like.

This knowledge is why I am not sure how I feel about schools staying closed. If we lived in an ideal world, I would feel sure they should stay closed, but we don't live in that world, and I know there are families out there right now just barely hanging on.  I think about the teachers, with families of their own often, and I know they will be put at risk going back to in-person school, as well as the aides and lunch workers and bus drivers and therapists.  I worry about all of them.  But I can picture most, of course, the situation we have lived through, the child who needs help so badly and the family so extremely stressed by that child's needs, and I worry so much about how they are managing to go on. I know some of you reading this might be living that life right now, and feeling like you are very alone. I wish I could help more. I wish I could come to your house and take care of your child for a day or two, so you could sleep and recover. I wish I had magic.I wish I could fast-forward your life to calmer years.  But right now all I can do is tell you I am thinking of you.

We are so lucky.  Janey, at almost 16, is happy most of the time.  Aside from a period of adjustment at first, and from the days she got upset by Zoom meeting school, which we will no longer do, she has been a champ during this time at home.  We are enjoying her.  Most of that is just her maturing.  Some of it is changes we made, changes in our expectations of her and also changes in our lives.  Tony retired early, which has been a financial challenge but without a question absolutely a right decision.  The boys are older.  We are okay.  We hope that Janey can safely go back to school at some point, because she loved high school, but for now, we are okay.

I hope all those in the places of decision making do give a thought to those who are in the Tough Years of severe autism.  I hope we can find a way to help those families get through this.  I won't say to them that I don't know how they do it.  I know how they do it.  They do it day by day, hour by hour, minute by minute.  They do it because they love their kids, their amazing kids.  But they need help, and we as a society need to figure out how to help them, especially in these extraordinary times.

Autism Mother Myths and Truths

If I picture, without taking time to think much, a typical autism mother...well, do it yourself.  Just form a quick picture in your head of what you'd think of when you think "autism mother".

It's a strange exercise, because despite being an autism mother myself for a long time now, what I picture doesn't look much like me.  I picture a warrior.  I picture a mother who would do anything, anything at all, to help her child---a mother who fights for her child on every level every day.  This mother works day and night to get her child everything that might possible help them.  She also is completely devoted at home to her child.  She cooks special diets, she fills each day with enriching activities, she is completely accepting of her child while somehow also completely determined to give her child what is needed to live a life as close to "normal" as possible.

That's not me.  It's not anyone, really, or it's very few people.  I've been trying to figure out where the image comes from, and I think it's mostly from books.  Autism mothering books don't seem to be quite the vogue they were for a while, but when they were (I think the heyday was the 1990's), they seemed to follow a formula.  Child is diagnosed.  Mother briefly is overwhelmed and horrified, although of course she knew from the start something was wrong and had to fight to get doctors to see it.  Mother decides on a course of action to "cure" child, and follows that course without rest.  There are some tough days, but then there's a miracle breakthrough.  And at book's end, the child is either completely non-autistic, or they are still a little autistic but only because that autism helps them to have some amazing talent.  Not every book is like that, but a very lot were, and I'm a devoted reader.  Before ever having Janey, I knew just what an autism mother was like, and strangely, all those years later, I still kind of have that stereotyped picture.

What are autism mothers really like?  They are, at least to start, the same as any other mothers.  They aren't specially chosen. 

I can speak best for myself.  I'm no warrior.  I back away from any fight I can, or even any disagreement.  I'm not good at doing anything without rest.  If I knew a way to "cure" Janey, I'd probably be a slacker and not really do it very well.  OF course, there isn't a way to cure her, and that would not be my goal at this point even if there was.  I didn't fight for Janey to be diagnosed.  I didn't want her to be.  I am sure I was in quite a bit of denial, back then, but by the time she was diagnosed, it didn't take a lot of fighting to diagnose her---it was pretty obvious to almost anyone what was up.

However, I would have to say there ARE some traits of autism mothers.  They are traits that we develop, from living the autism mother life.  We don't have them to start, but we have them after some years of raising out kids.

What are they?  Well, protectiveness is one.  We might not be warriors, but we are ever vigilant.  We know how vulnerable our kids are, and we are constantly, every minute of our life, prepared to do what it takes to keep them safe.

Ability to live in the moment is another trait.  We can have a day which most parents not living our lives would consider about the toughest day of their life, and wake up the next morning, and if things are better, we can enjoy the new day.  We've learned things can change on a dime.  I'm willing to bet as a whole we are dealing with less anxiety than most with the whole COVID-19 bit.  We know how to live with uncertainly and stress, for sure.

I'd say most of us have a pretty good sense of humor.  We can laugh at ourselves, and laugh with our kids.  We see life's absurdities, see how what so many people take so earnestly isn't really as important as they think. 

That goes along with the next trait---an appreciation of what's really important in life.  We have come to know that it's not education.  It's not money.  It's not a perfect house, a fancy vacation, an active social life or a high IQ. Our kids teach us that.  The important things in life are the very little things and the very big things.  It's coffee in the morning and a song everyone sings along with.  It's a meal that we all enjoy, it's a movie we've seen a hundred times but still like.  It's running around in the driveway and getting a good night's sleep.  And it's love---loving our kids, loving them exactly as they are, loving them after a day full of screaming or a day full of manic laughter, love filled with pride, love sometimes mixed with tears, but love over all else.

I have to say---the mothers I have met that are living this autism mother life with me (and the fathers too, but in honor of Mother's Day, today is for the mothers) are amazing people.  We have a bond forged by shared experiences, and I would venture to say every one of us is a better person because of our loved ones with autism.  Happy Mother's Day, with much love, to the autism mothers out there.

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.

Mostly Sunny---a Janey report

Sometimes I miss writing more entries in this blog!  But other times I know I'm writing less because life with Janey is less intense than it used to be.  Still, I plan to continue this blog as long as I'm around to write it.  It's interesting and cool to think of the girls that are growing up along with Janey, ones I met through this blog when she was just three and who now are teenagers or young adults, and it's also great knowing some families with younger girls (and boys) are able to at times get a glimpse of what growing up as a family with an autistic member is like.

So, how are things with Janey?  Mostly sunny!  High school is off to a very good start overall.  We went to an open house a while back, and got time to talk a lot to Janey's teachers.  She has four teachers, with one being her homeroom teacher.  The rooms are all connected, and the kids move from class to class within the connected rooms.  Her teachers all seem incredibly good.  It's just amazing to us always what great teachers Janey has had.  It's wonderful hearing them tell stories about Janey.  You can tell they get her, and that they like her!  That means everything to me.  Lately her homeroom teacher has been sending us pictures of Janey at school along with reports.  I love seeing the pictures!  It's so cool to get to see Janey's days that way.  With the rise of smart phones and having a camera always around, I hope more teachers are sending pictures to parents, especially to parents of minimally or non-verbal kids.  A picture really is worth a thousand words.

A few weeks ago, Janey had a tough week.  She cried all day for about a week, and did the same at school.  Even coming in the middle of a long great run, it was very upsetting.  I think a lot of you can relate to how we flash back to the worst times so easily.  It's not Tony and my default thought "Oh, she's been happy for a long time and she's be happy again soon!  This is just a little glitch!"  Instead we think "Here we go.  It's going to get worse and worse and worse.  She'll probably end up back in Rhode Island (where the psychiatric hospital was that Janey spent time in when she was 10)"  I think it's a kind of PSTD.  It's very hard to take a step back and just think "Let's ride this out and see what happens".  But in this case, after the awful week, Janey suddenly became happy again.  She got off the bus one Friday afternoon and was happy, and has been happy since.  I need to try to remember that!

The other night, Janey wanted to watch a certain Angelina Ballerina.  Hulu and Netflix constantly take Angelinas off and on, and it's frustrating.  To buy an hour long episode often costs about $15---to have it permanently to watch.  Janey wanted Shining Star Trophy, which has been one of her favorites for a long time, but it wasn't available and I didn't want to spend the money.  We are being very careful with money now that Tony has retired early.  So I said no.  Janey threw a fit---screaming and crying and flinging herself around.  This was after the tough time had passed, and she was so sincere in her sadness and anger I thought to myself "What the heck?  What does she ever ask for, anyway?" and I bit the bullet and bought the show for her after having said no.

Janey at school

Later that same evening, a very interesting thing happened.  I told Janey it was bedtime.  She wasn't pleased.  Usually she'll just get up over and over if she doesn't want to sleep, but this time, she looked at me for a minute as if she was thinking something over, and then started to scream.  Somehow, I knew right away this was a different scream than I've ever heard before.  It was fake.  It had a whole different tone to it. 

To be honest, I was thrilled.  It was the first time EVER I have seen Janey consciously throw a fit when she wanted something.  Other times, she's certainly thrown a fit, but it's the much more common fit, one of not having the words to explain, one of pure unhappiness.  This wasn't that.  It was a deliberate thing.  I have no doubt about that.  I said, calmly but firmly, "Janey, it's time for bed.  Turn off the TV, put down the remote and get in bed"  And she gave me another long look, as if deciding what to do, and then did just what I asked, quite cheerfully.  You could almost see her thinking "Well, it was worth a try"

It's so cool to see that Janey is still developing, still learning, still maturing.  It takes her longer than most kids, but she does make progress in so many ways.

High school doesn't require uniforms.  When I see Janey dressed in school clothes, regular teenage girl clothes (although of course ones I pick out, but I do try to dress her in clothes her peers might wear), it sometimes takes my breath away.  It's funny---I can remember 15 so well, and having a daughter that age---it makes me think of how much she is her own person.  Like everyone else, she is different than her parents, not just because of her autism, but just because she is who she is.  I am so proud of her.  I look forward to watching her become an adult.

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.

The Mystery of the No Sleep Nights

My mother is a huge fan of mystery series books, like the Nancy Drew or the Judy Bolton ones.  The title pays homage to that, and to the fact sometimes life with Janey can feel like a long series of mysteries.  One of the biggest ones is why sometimes Janey simply skips a full night of sleep.

Overall, sleep is not one of the biggest issues we usually face with Janey, at least not compared to a lot of kids with autism. (knocking on wood here, of course!)  She goes to bed fairly early, usually somewhere around 7 or 7:30, and gets up early, about 6.  While she's asleep, she barely moves, and we can usually be as loud as we want to around our small house without waking her.

However, once in a while, probably 10 times in her life, Janey has just plain skipped a night of sleep.  When this happens, she doesn't sleep at all.  Not one wink.  And almost always, the next day she isn't particularly sleepy.  It's like for that one night, she just didn't need to sleep.

I don't have seven clues, but I have a few!

This happened most recently Thanksgiving night.  Janey was not in a good mood for Thanksgiving.  November is often one of her tougher months, and she'd had a fairly rough week.  There was a lot of screaming that day, so we were looking forward to a night's break.  But she just never went to sleep.  Tony stayed up with her until about midnight, then I took over.  The funny thing was that she was much more cheerful during her normal sleeping hours than she was the day before or the day after.  Although she wasn't sleeping, it was like she was in a different mode than regular daytime.  She was up until 5 pm on Black Friday, then went to sleep and slept all night.

What do we do all night on a no sleep night?  Mainly watch videos.  I could insist that we turn off the TV, but I know that would do no good.  Believe me, I've tried, and believe me also, once you get a ways into a no sleeping night, you do whatever you have to do to get through the night.  When Janey is watching videos, I stay right near her on the couch and struggle to keep my eyes open, and change videos when she needs me to.  Sometimes she asks for a ride or a shower, but in a mild way.  She seems to know what she can do in the middle of the night and what she can't do.

There isn't much of a pattern to these no sleep nights.  Sometimes they happen when she's in a good mood, sometimes bad.  Sometimes she seems manic, sometimes there is no sign at all she won't sleep.  Sometimes we realize she's had chocolate after noontime, which disrupts her sleep badly.  Sometimes she has eaten nothing out of the ordinary.

As I often do lately when trying to figure Janey out, I think of what any teenage girl of 14 would be doing.  Although I think my sleep at that age was pretty regular, of course sometimes I stayed up late.  This was usually when spending the night at a friend's house.  I know there were lots of nights that I was up until 3 or 4 am laughing hysterically with friends, probably discussing who had a crush on who for hours on end.  Maybe an occasional late night or no sleep night is just something Janey needs, to break up the routine a bit.

Another theory I have is that the no sleep happens when Janey's brain is working on processing something new.  Lately, we've noticed her talking is on an upswing.  We've been hearing some longer, more complete sentences---for example, instead of saying "Go to the store!"  she might say something like "I want to go for a car ride to the store" or "I want to get salami at the store"  This isn't all the time; it's still pretty rare, but it's nice to hear.  She has also been reversing pronouns a bit less.  One night she wanted a shower, and I said "I'll give you a shower in a minute" and she said "You give me a shower in a minute"  which surprised me quite a bit.  Maybe when her brain is making new connections, it's hard to sleep.

When the nights happen rarely, as they do, we can manage it, especially now that Tony is retired.  But if they ever started happening on a regular basis, like more than once a week or even once a month, it would be very hard to take.  Janey needs to be watched at all times.  I think about parents who have kids with much more severe sleep issues than Janey, and my heart goes out to them.  It's a case where I have to hold myself back from saying what I myself don't like to hear---"I don't know how you do it"---because I do know how you do it.  You do what you have to do.  You scrape by.  You drink a lot of coffee and take naps when you have a moment's respite.  You live with a sleep deficit.  But I know it's not easy.  As I write this at 8 pm, Janey is fast asleep, and I hope everyone reading this gets a good night's sleep---if not tonight, some night soon!

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.

The mother I mean to be vs. the mother I am

A few weeks ago, I attended a panel at Janey's school made up of five adult women with autism.  It was tremendously moving and informative.  I left that day determined to work harder to help Janey reach her potential, as the women on the panel had, to strive to ignore labels about functioning, to enrich Janey's life in any way I could, but also to respect her as a person, to follow her lead.

I'm not doing a good job.

The bane of my existance

Let's talk about last night, or, rather, early this morning.  Janey went to sleep about eight last night, late for her.  She woke at 1 am.  Tony tried to get her back to sleep, but she was having none of it.  At two, she came to me in bed and woke me up.  I told Tony to sleep and I would take over.  At first Janey watched YouTube videos on the TV, which can be used as a computer monitor.  She does this with complete ease, but after a while, she wanted to watch things on Netflix or Hulu or Amazon, which is done through an Amazon device.  Although the device is in my eyes no more complicated than a mouse, probably less so, all my attempts to teach Janey to use it have failed.  She wants us to put on the shows for her.  That's fine, except she constantly wants to change shows.  After we spend long moments figuring out what show she wants, she watches it for about 30 seconds and then wants us to switch to something else.  That gets old fast at the best of times, and in the middle of the night, it gets unbearably old unbearably fast.  We hobbled through the night, with both of us speaking harshly to the other at times, both of us not doing what the other wanted done.

So what do I do?  How do I handle this?  I KNOW she could learn to use the remote that controls the device.  But when I try, she screams.  She lashes out.  She gets hysterical.  If I simply refuse to change shows any more, she will persist with asking and screaming and so on for hours and hours.  She doesn't quit.  She doesn't give up.  Believe me, I have tried this for YEARS.

I've told myself at times to just accept this, to see it as a time to interact.  Fine.  But it's not an enriching interaction.  It's the same, every time---finding a show she wants and picking the episode she wants, through a combination of single words and backwards and forwards pointing, putting on the show, then repeating in less than a minute.  Over and over and over and over and over, until finally somehow she finds a show she actually wants to watch---for maybe 5 or 10 minutes.  Then it starts again.

This interaction is mirrored in so many others.  Janey asks for a car ride.  She wants to get chips at the store.  She wants a shower.  Nothing else will do.  No variations work.  No amount of refusing, or explaining, or substitution, or distraction, or anything else, works.  When I try something new, she refuses it.  When I give in and do what she wants, but I don't do it fast enough, or exactly the same as the time before, or with a happy enough demeanor, she is furious, a fury that doesn't stop until it gets done right.

In my dream of the mother I want to be, I am endlessly patient. I am creative enough to figure out ways to either break her out of her routines or subtly enrich them.  I am never tired, never sleep deprived, never bored, never just fed up.  In my dreams, Janey is different too.  She responds to my patience by trying new activities.  She surprises me with glimpses of the thoughts I know she has stored in her mind.  She is quirkily fascinating.  She is a full partner in our joined quest to give her the most wonderful life a girl with autism ever had.

The problem here is, of course, that Janey and I am both human.  We are not stereotypes.  We are not perfect.  I get tired too easily, thanks to a thyroid that has given up and a liver damaged by the medication that was supposed to help me have a safe pregnancy with Janey and the lovely "unspecified autoimmune disease" which is slowly getting specified as several types that cause, among other health issues, extreme fatigue. In addition, I am often too easily discouraged. My desire for difficult interactions to end quickly can cause me to take the easy way out of them often.  Janey is stubborn, unyielding.  She is who she is, not because of autism or despite autism but simply because we all have a collection of traits that make us who we are.  She is strong, determined, enthusiastic, yes, but also stubborn and unyielding.  Together, we make up a mother/daughter pair with many strengths, but also many weaknesses.

The mother I mean to be finds a way around the challenges.  The mother I am---sometimes not.  Janey and I am both who we are.  Perhaps that is the message here.  We all do the best we can, every mother and daughter, with the limitations and weaknesses we have, but also with our strengths and our determination and our love.

This and That

Sometimes I wait to write a blog entry until I have one subject I deem big enough to write about, but this time, I've got just a little of this and a little of that.

Last Friday, Janey had an ultrasound as part of the tests she's having to try to figure out why she, after just getting it once really, has stopped getting her period for the past two years.  After asking around, it seems like this has nothing to do with autism or her other challenges---it's something else.  We aren't that alarmed or worried, but it's something we need to eventually figure out.  Blood tests shows she makes almost no estrogen, which is quite unusual.  Otherwise, there isn't a lot up.  They even made sure she has two X chromosomes, which she does.  I was dreading the ultrasound badly.  There is no real way to prepare Janey for any medical procedure, although I tried, telling her they were going to put lotion on her stomach and then "mush" her tummy a bit.  Of course, she screamed when they started.  But I liked how the technician handled it all.  She talked in a comforting way but just kept going, while Tony and I held Janey in place.  The noise attracted a passing doctor, who also looked at the ultrasound and said on first glance everything looked good.  Now we are waiting to hear from the adolescent specialist as to what we do next.

Janey has been up and down lately.  There were a few days that featured the return of the screaming---the screaming that has no cause she can tell us or we can figure out, the screaming that is so loud it can be heard from very far away, so loud I can't imagine how she stands it without going deaf, or how I do.  There were a few afternoons where it went on for an hour, something that used to happen a lot but doesn't as much now, thankfully.  It brought back all the old familiar feelings of hopelessness and despair, and left us all on edge.  I hope it's over for now.  But there have also been a lot of days lately where Janey has been a delight---happy from morning till night, funny and upbeat.

This weekend, Janey surprised us with a few things she said.  At one point, out of the blue, she yelled over to us "I need a foot massage!"  We were both startled.  She doesn't usually use the first person like that, or use complete sentences, or be quite so direct about what she needs.  She was holding a foot up in the air, so we even knew what foot needed massaging!  That was great.  Later that day, in the car, she said "What does the green light mean?"  I think it's a question she's been asked, but she paused after asking it---she said it exactly how a question is said.

The "talker", the iPad with AAC apps on it, gets a fair amount of use.  Janey seems to enjoy it, but mostly at bedtime.  I also give it to her when she seems to be upset or confused, in hopes she'll find a way to tell us what she wants.  I have two programs on there, TouchChat and Proloquo.  (actually 3, but the third one is pretty useless)  TouchChat is what she uses at school and the one her great teacher helped us personalize, but at times, she seeks out Proloquo.  To me, Proloquo seems more daunting, but it has more content, too.  The other night I saw why she chose it, as she easily got through a few screens to find the word she wanted, "hate".  She'd been in quite a mood, and she hit "hate" over and over and over, while occasionally giving me a meaningful look I had no problem deciphering!  I actually loved that.  She was able to tell me what she was thinking, and it's pretty typical that a 13 year old girl who has spent the day with their mother might be feeling some feelings the opposite of "love".  She isn't usually using the programs for full sentences, more for finding single words, but I am letting her take the lead, and it's fantastic she seems to like having the programs to use when she wants.

All of us in the family have been struggling a little lately with our own issues.  It's been a tough spring in a lot of ways.  But Janey continues to surprise us, to keep showing us new sides.  She is becoming her own person, more and more. We've been pleased lately that she has a trait NONE of the rest of us have---neatness.  She's very organized.  What she uses goes back in the place it's supposed to be.  A little more all the time, she is truly a help around the house, doing small chores we ask her to do and picking up after herself and often after us.  I don't know where she got that neatness gene---maybe from my sister.  But one of the greatest parts of being Janey's mother as she starts her teen years is seeing who she is, seeing her very cool personality unfold more every day.

Luck and Joy

Janey's annual IEP was last week.  For some reason, I was feeling edgy about it.  I don't know why.  It's about the 30th IEP I've been to as a parent, and there wasn't any big issue I needed to address. 

When the meeting was over, I realized what I think had been getting me worked up.  It was the feeling that somehow I SHOULD have something big to insist on or ask for.  And I didn't.  We left the meeting extremely pleased with all we had heard.  We are so lucky.  Everyone there is truly on Janey's team, not just in name but in reality.  They love Janey.  They get a kick out of her.  They see her as an interesting and valued person.  And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.

A joyful reunion

One great piece of news from the meeting is that Janey's teacher will have her again next year.  7th and 8th grade at her school works that way, I found out.  I adore Janey's teacher.  She is absolutely wonderful.  I loved hearing her stories about Janey---stories that showed she knows how to encourage Janey to do her best while still respecting her for who she is.  The OT at the meeting was terrific too.  One thing she said that really stuck with me was that she laughs 10 times during a session with Janey.  I love that attitude.  Janey can truly be a lot of fun to be with, if you get her, and the people at her school get her.

It was a very nice weekend last weekend.  Freddy was home all last week from college.  Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this!  I can't believe this!"  I could tell by the sound of his voice that something very unusual had happened.  He sounded shocked---almost scared.  I jumped up and saw, coming through our door, my older son William!  He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise!  He wanted to give us a shock, and he did!  He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.

That night, we ordered takeout, and were all eating it together in the living room.  It struck me something seemed different, a little off.  And then I realized what it was---Janey was just sitting and eating and being part of the crowd.  She wasn't crying, she wasn't making demands, she wasn't needing extra attention.  We were just chowing down as a family like we love to do.  It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.

I wonder often---if someone was viewing us from outside, how would they see things?  I know, in reality, there are still many, many times in an average weekend that Janey gets very upset.  There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on.  When I look back on a weekend, though, those times sort of get edited out now.  I think we can do that because unlike in the past, they don't last for long.  She gets upset, we deal with it one way or another, she settles down and it's fine.  It's a combination of things.  We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.

Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older.  I think a lot of it is acceptance.  If I put things in a negative way, I could say it's also giving up on certain things.  We don't feel much sadness or despair over what Janey can't do, most of the time.  She is who she is.  We don't expect her to never get upset, never scream or cry or bite her arm.  We know those times are part of her, just like the times she dances and sings and laughs.

As William was getting ready to go home yesterday, he remarked on Janey.  He said "You know, overall lately she's a joy"  You should have seen her when she saw William at first.  She was overcome with happiness to see her big brother.  At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat.  William has been here for all of it.  Hearing him say that---it meant a lot.  Freddy said similar things too.  She is lucky to have the brothers she has, and they are lucky to have her.  And we are lucky to have all three of them.

It has gotten easier, but it never ends

When things were toughest with Janey, when it seemed almost impossible to go on, I hung onto the words of friends I'd met through this blog, mothers with older girls with autism, who told me it would get easier.  I had my doubts, but I trusted them to tell me the truth, and they did.  It does get easier.  If I could go back about 4 years in time and tell myself how things are now, I'd hardly believe myself.

It gets easier, but I have to admit something.  Even easier, it's tough.  

Me

It's tough because it's forever.  

Of course, everyone's children are their children forever, no matter how old they get or where they go or what they do.  My boys are home from college as of last night, and they are still my babies.  But in so many ways, my relationship with them is very different than my relationship with Janey.

Janey requires full time care.  She must be supervised, always.  It is not safe to ever have her alone.  That will not change, ever.

Every day of Janey's life, even the smoothest days, we are on alert for her to melt down, to scream, to bite herself, to possibly lash out, to fall apart.  We are never fully relaxed.

Janey needs help with all aspects of self care---dressing, feeding, cleaning herself, toileting---everything.  Large parts of every day are spent taking care of her, at about the level you'd spend taking care of a typical toddler.

Janey's need for routine and for control makes it so when she's home, which is most any time she's not at school, we are not able to listen to music that isn't hers, watch TV that's not what she wants to watch, even just sit casually if we are not sitting the way she wants (without any crossed legs or any crossed body parts at all).  Our acceptance of her needs in this way is a huge part of why life today is easier than it was in the past.  It's a worthy bargain, but it's also a huge limitations on daily life.

Janey's limited speech makes it so we often are guessing what she wants.  We struggle all the time to find a way to let her tell us her needs and to communicate to her what we need from her.  Something as simple as picking a TV show to watch is a minefield of potential misunderstandings and resulting tantrums.

For those reasons and many more, it's tough.  And it's forever.

I've been having a hard time emotionally lately.  I think I'm at the point in my life where I'm thinking "What about me?"  That feels selfish.  And being a mother is absolutely the most important and meaningful thing I've ever done and will ever do.  But sometimes, I think about being at or past the middle of my life,  and how restricted my life sometimes feels.  That isn't all because of Janey, of course.  I'm not exactly a go-getter.  I don't like to drive, I'm a bit of a loner, I have low energy partly by nature and partly as a result of several fairly severe medical conditions I have.  But when I try to think of ways to expand my life, well, there is a large roadblock to almost anything I might try to do.

In the early years of having a child with autism, there is a drive to figure out the child's potential, a possibility of great changes to come.  As the years go by, there comes a point when things slow down, when we realize that there is no miracle cure coming.  It's a good point, in many ways.  It's a point where we can do what Tony and I did a few years back---change our ways of thinking and operating to give Janey the best and most stress-free life we could, so that life was and is easier for all of us.  But it's also a point of realization that this is for good, this is our life and her life.

I have tried over the years to end every blog entry with some kind of hope or positive message.  That is still what I want to do.  I want everyone to know the value of a life like Janey's, how she is important and amazing just the way she is.  But I also want to be honest, because we as mothers are important and valuable and amazing too.  And we get tired.  We get discouraged.  We feel alone.  We sometimes feel hopeless.  We need to keep on going, and by being honest with each other about the challenges as well as the joys of raising our autistic daughters, we can help each other get to the next day and month and year.