Oxygen masks are hard to put on

 We've all probably been reminded of airplane rules, how they tell adults to put on their own oxygen mask before their child's one.  It's part of a series we get told as autism parents, and I don't think I'm the only one that can get annoyed by them.  The reminders feel like they are saying "You are responsible for your own burnout, your own tiredness.  You need to take time to put yourself first.  That's on you"  And I don't even need to explain to those of you who are living this life the flaw there---how impossible it can be to get even a minute to take care of yourself, how none of us can just say "Okay, today is for ME!  I'll call the handy available affordable babysitter, who will be right over, and I'll go out to the spa and to lunch and to the museum and a hotel overnight and then I'll come home and be a better autism parent, because I did the right thing and took care of myself!"  Ha.  HaHaHa.

I say this because I think you'll all get why over the past 9 or 10 years, I ignored a lot of signs my health was worsening.  I had a few diagnoses already---NASH liver (non-alcoholic liver disease), Sjogren's syndrome (an autoimmune disease that causes dry eyes and mouth and extreme tiredness) and hypothyroidism, along with smoldering diverticulitis.  I figured all of those were more than enough to explain why I was so extremely tired all the time. I assumed they were also why it was becoming increasingly hard to concentrate or multi-task, and even why I had pain in my muscles and in my bones al the time, every minute, always.  When a year or so ago my vitamin D was extremely low, low enough that several doctors said they'd never seen a lower read, I just took more D.  When, over the course of the past 9 years, I had blood test after blood test that showed I had high calcium levels, I didn't investigate and neither did any doctor.  Those tests were never the focus of my blood tests.  Instead, my primary care doctor constantly tried to get me to take cholesterol drugs, which I weren't convinced were safe for my liver.  Finally, I decided to switch doctors.  I was feeling increasingly unheard.

I saw my new doctor, he ordered blood tests, he saw my calcium was once again high, and miracle of miracles---he ordered one more test, a test of what is called Parathyroid Hormone.  My PTH level was sky high.  That was all it took.  He diagnosed me with Primary Hyperparathyroidism.  

For those of you who don't know what that is---in a nutshell, it's when a parathyroid gland (or two or three or four---you have four, located on the back of your thyroid) goes haywire.  It tells your body you don't have enough calcium, when in reality, you have too much calcium.  Your body goes crazy trying to get more calcium, and takes it out of your bones.  The result is the symptoms I'd been having, and more---extreme tiredness, muscle and bone pain, low Vitamin D, confusion---and there are many more. Do a quick Wikipedia search about it and you'll learn a lot.  And PLEASE---the next time you have blood tests, check if your calcium is high, even a little high.  If it is, ask for a PTH test.  Right away.

There is only one cure for hyperparathyroidism---surgery to remove the haywire gland.  I had all kinds of imaging tests to try to locate exactly which gland had gone bad.  They weren't definitive, so I went in for exploratory surgery.  Luckily, the gland was found quickly.  The surgery took about 4 hours, took out the bad gland, I was in the hospital only one night, the main pain afterward was just from having had a breathing tube, and as parathyroid hormone has a half life of only about 4 minutes, by the time I came out of anesthesia, I was cured.

And, incredibly, within days, the pain I had felt non-stop for years and years and years was GONE.  Not just better, but gone.  My confusion was greatly improved.  I felt just...better.  Better like I had thought was no longer something I could feel.

My point here?  Well, it's partly just to educate people about hyperparathyroidism, which is sadly underdiagnosed.  But it's more to say---we as autism parents, sick or not, undiagnosed with some surprise disorder or not, just can't put on the oxygen mask easily.  We are used to being tired.  We put our kids first, not because we are saintly self-sacrificing parents, but because we don't have a choice.  Our kids need us.  They need us 24 hours a day, 7 days a week, 365 days a year.  And if our kids have severe autism, by any name you choose to call it, as Janey does, this will not change, not for our whole lives.  I could have easily gone the rest of my life without the surgery, without the diagnosis, because my life simply didn't leave me the energy, the time or the help we needed to get the diagnosis.

Even to have the surgery, Tony and I had to ask our sons to take time off of work.  They did, willingly, and they took excellent care of Janey.  But that is not something we can do except in emergencies.  If they had not been able to do that, or if I had been a single parent---I don't even know how I could have had the surgery.  

We need a structure in this country to provide REAL help for people caring for those with severe autism.  We need it NOW.  It exists in most countries.  I know that from my hobby of exchanging postcards with those around the world, and from hearing from other parents through this blog.  We need it not just so we parents can get a break, but so we can live.  Literally, live.

Janey did not do very well with my surgery.  The day before the surgery was her last day of school.  Usually, we would have talked to her a lot about this, and had a busy day set up to make up for the lack of school the next day.  But we were pretty distracted.  So, the day of my surgery, she had no school, and Tony and I both were gone from the house---something she is supremely unused to.  She had fun with her brothers, but then the next day, again, Tony was gone getting me home.  When I got home, I had to stay away from her for a few days.  She likes to jump on me with enthusiasm, and my incision made that unsafe.  The incision was also big and scary looking, like someone had tried to cut my throat (it's already a lot better looking now) The surgery was on a Thursday.  By Sunday, Janey was in the worst shape mentally we'd seen in years.  She was screaming non-stop, all day.  She frantically took shower after shower, asked for ride after ride, bit her arm and wailed and was so unhappy we worried she'd broken a tooth or something.  It took me getting up the strength to go for a ride with Tony and her and me finally doing what I should have done from the start---explaining over and over what had happened, telling her my hurty place would get better soon, giving her treats and spending calm time with her--to get her calmed down.  She still is avoiding me when she can, quite bothered by the scar, but much better than that awful Sunday.  We were given a vivid reminder we can't ever take the years of vastly improved behavior and happiness she has for granted.  We were also given a vivid reminder of the challenges of self-care.  Caring for ourselves as parents isn't a zero sum game.  Caring for ourselves often results in less time to care as well for Janey as she needs.

And so---we are into another summer.  I hope it's starting out well for all of you.   Good health to you all, and check your calcium!

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.

Hot and bothered

 The last three weeks have been the hottest ever recorded in Boston, and it's been miserable.  Hot weather is miserable everywhere (or it is to me) but Boston's hot weather feels like a special kind of awful---humid air but no rain and a feeling of there not being a full breath to take outside.  I hate it.  And so, take that into consideration when I rant here.

Janey had a tough day of school today.  We got a call from her summer school teacher.  He seems great, and I really liked the way he told me about her day---emphasizing the good, outlining all she was saying and why she was getting upset.  She wanted to go home, and failing that, she wanted to go to the dance studio, and if she couldn't do that, she wanted to go swimming.  It was too early to go home, the dance studio was closed for the summer and the pool for some reason is not available for special needs summer school students.  And so she was angry.  When her summer ABA therapist tried to get her to do work, she pulled her hair and then bit her (not badly, but a bite is never good).  She later also tried to bite her teacher.

It's not unheard of for Janey to pull hair or bite, but it's quite unusual in the last few years.  I think she was feeling what we've all been feeling---just fed up.  She's tired of the heat keeping us from doing anything much fun.  She is tired of schoolwork.  She wants to do the things she wants to do---dance and swim and go for car rides.  And she expressed what she wanted, with words, as we always ask her to, and it didn't make any difference.  She lashed out.  It is not acceptable for her to pull hair or bite, or to hit as she did this evening with me while I was trying to talk to her about the biting and hair pulling, but I can somewhat understand why she did.

I was feeling in a mood today before we got the call from the teacher.  I read an article in the Boston Globe about a new law that allows young adults with disabilities access to colleges in Massachusetts.  That is great---I am truly happy for the people that will be able to take advantage of that program.  But reading about it, it soon became apparent that Janey won't be one of those people.  The article acknowledged that---it said the state's total population of college aged students with serious intellectual disabilities and autism is around 3500 to 4000, but that "a smaller number are likely to seek college access under the new law". Then it said that those who do will "improve their chance of employment" and that "Individual campuses will determine their own criteria for acceptance"  There were quotes from students who accessed college under past pilot versions of this program, and while I was very, very happy for those students, the language level in those quotes made it clear that Janey was not going to be one of those students.

And none of this is new.  As I'm seeing expressed more and more, thanks to groups like the National Council on Severe Autism, people like Janey are left out not only from the mainstream but for a huge percentage of programs expressly for people with disabilities and more specifically, people with autism.  We all know the key words and phrases "Must be able to follow directions"  "Must be able to function with a teacher/child ratio of 4/1" "Must be able to read music" "Must not have any self-injurious behaviors" "Must be completely independent with toileting".  They might as well be saying "Must not be THAT kind of autism.  Must be the "good, quirky, interesting" kind of autism, not the "bad" kind.  They don't say that.   I am sure most people don't even think that.  The truth is, I think a lot of people, even in the disability world, are not totally aware people like Janey exist.

I am weary.  I don't know what the future will hold.  Janey turns 18 a week from tomorrow.  Tomorrow, we will be keeping her home from school---the teacher did not ask us to, but I know how her angry and lashing out moods can go, and we need to break the cycle.  Because there is no plan B.  We will never again take her to an emergency room.  There is no respite.  There is no residential home waiting for her as an adult.  Hopefully, at age 22, we will find her a decent day program, once she ages out of the public schools.  She won't be going to college, special new law notwithstanding.  

I think parents of children like Janey are starting to speak out, and that is so important.  Parents like us love our kids so much that we can be inclined to not talk about how hard it is.  But if we don't, if we let Janey and all the people like Janey be without a voice, they will be left out.  Nothing will change.  And on a night like this one, where I am tired and hot and weary and discouraged, I can say that just can't happen.

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 summer starts now

When the boys were little, as we pulled into the driveway coming home from the last day of school, I'd always say "The summer starts...NOW!"  I'll say that to Janey as she gets off the bus this afternoon.  Her summer is starting.

Marshall Point Light, in the town I grew up in
in Maine.  Even with surroundings like this,
I still hated summer and I still do.

It's going to be a different summer than usual.  I'm not sending her to summer school this one year.  Last year, summer school was basically a disaster.  Her teacher was not a good match for Janey.  The bus was horrible, showing up whenever it felt like it, leaving us sometimes waiting outside in the hot sun for long, long periods of time.  The program itself seemed to consist of far too many kids crowded in one indoor room, being taught academics by a too small staff.  It infuriates me that in a city with hundreds of summer programs of all types, taking advantage of all Boston has to offer, that the best they can do for those with some of the greatest needs is to stuff them in a room.  I'll go back to trying summer school next year, as Janey will be in a different program then, the pre-high school program, but this summer, we're taking a break.

Of course, I'm a little panicked about how summer is going to go.  In the best of times, summer is my least favorite season.  I don't like heat at all, I don't like the lack of routine, I don't like much of anything about it.

I had all kinds of notions about setting up very detailed schedules to get through each day, but then I did a reality check and knew that would not work.  So I am trying something simpler.  Each day, in the morning, we will go someplace.  It doesn't matter where really.  It might be out to a fast food breakfast, or for a walk in a park, or to some store like Target, or to a pond to swim.  Once a week, I'm going to aim to take the train into the city, just to hang out.  Freddy is home this summer and is wonderfully willing to help out, or I would not really be able to attempt many of those things, but with his help, I think it will work.

I'm also going to pick one academic area a day to work on a bit with Janey.  I'm talking very basic stuff here, like picking a letter and working on learning to identify it, or talking with her about concepts like bigger or smaller, more or less, over or under, things like that.  I'll decide in the morning what that day's target will be, and then I can work it into the day---things like saying "Look, that flower is bigger than the other one!" or "I see a B on that sign!"

Aside from those two goals, I'm going to allow myself not to feel guilty about what gets us through the day.  If we get out in the morning, I'll relax if the afternoons are all videos and sitting around.  My energy level by afternoon is usually extremely low.  I can do things in the mornings, but afternoons---not so much.  Often, I get upset with myself over this, but I'm trying harder to be realistic.  Quite frankly, Janey probably wouldn't care if all day were just hanging out, as long as we took her now and then to the ice cream store and as long as Daddy gave her a ride at night, but I don't want to go that route.  So---I'll compromise with myself.

I'm still dreading the summer.  But that's not a new thing.  I can't think of a summer ever I didn't dread.  I'll be happy when it's September again.  Janey will have the same teachers next year as she did this year, and I dare say it was her best school year ever this year.  I can look toward that, and I think we'll make it through the next two and a half months.  Hopefully.

Silver Anniversary

Yesterday was our silver anniversary, marking 25 years of marriage.  And I was thinking all day that if I'd somehow been able to see the future, and needed to pick out a husband specifically to be my partner in parenting Janey, I couldn't have picked a better man than Tony.

You don't hear nearly as much about autism fathers as autism mothers.  But I'm pretty sure Tony's not the only fantastic autism father out there (in fact, I know for a fact he isn't---here's a shout-out to you, Dan!)  Tony is Janey's rock star.  I'm okay in her eyes, but Tony is her hero.  When he gets home from work, I see a smile that I just don't see any other time.  Daddy takes her for car rides, dances with her, cooks her favorite foods, makes silly voices for her, delights in funny things she says---Daddy is the sunshine of her life.

Almost every afternoon when Tony walks through the door, I say "Thank you for coming home".  He often jokingly replies "As if I have a choice!"  But he does have a choice.  I know that some fathers, faced with the challenges Janey brings (or the more typical challenges that William and Freddy brought) would not come home---would decide that it was all a little more than he bargained for.  And I won't say what I hate to hear---that I don't know how single mothers do it.  I know how they do it.  I know you do what you have to do.  But I will say I can imagine how incredibly tougher my life would be doing this on my own.

I've read that the toughest years on a marriage when parenting a child like Janey are the early years, but I don't think that's necessarily true.  Most people understand that parenting children in the early years is a very intense thing.  But most people also know that it gets easier, that eventually there will come a day when the children don't need to be cared for 24/7, when the children have lives of their own.  That day will not come for Tony and me, or for so many families like ours.  We will take care of Janey for the rest of our lives.  I am not saying this to try to say what a burden it is, how unfair it is, any of that. It is just how it is.  But I don't think many people would argue when I say that does put a strain on a marriage.

However, I think in many ways Janey has given us a stronger marriage.  We need each other.  We need each other desperately.  When Tony gets home, I am thrilled---each and every day.  I am thrilled not always for the reasons you might think of when reading romance novels---I am thrilled because I know I will get a little break, that I can sit and read for a bit.  When we do get a little bit of time alone together, we treasure it.  Yesterday, we had a wonderful day while Janey was at school.  We watched some TV, we went out to lunch, we talked and laughed and reflected on the past 25 years.  I am sure many people do more exotic things for their silver anniversary.  They might take a cruise, or have a huge party, or buy each other big gifts.  But I think we had just as much fun.

I'm not going to say it's all been sunshine and roses.  There have been times when the stresses of our lives certainly brought out the worst in both of us.  There have been bickering middle of the night fights over who slept less, there have been times that we lashed out at each other because we had run out of patience a few toileting disasters ago, there have been arguments over nit-picky things we felt the other wasn't handling correctly.  But in looking back, those moments fade behind the good moments, the moments we together watched Janey do something that amazed us, the times we quoted Janey's latest video obsession and both of us got the reference and we laughed until we cried, the amazing moments when all three kids were together and happy and we couldn't believe we've created the family we have.

To all the fathers out there, indeed, to all the married couples out there living this uniquely challenging life----we raise a cup of coffee in a virtual toast to you.  And to Tony, Happy Anniversary.  I love you.

None of the above

I used to be a big fan of women's magazine quizzes.  You know the type.  They give a scenario like "Your doctor has told you that you need to lose weight.  You..."  A.  Don't even bother to try, because losing weight is impossible  B.  Go on a starvation diet until you have lost the amount he wants  C.  Start eating a healthy diet full of fruits, vegetables and whole grains.   You all know what the right answer is supposed to be, and picking it can give you a good feeling, a feeling of superiority to those people who might pick A or B.

In real life, it isn't always quite as clear.  I kept thinking about that yesterday.  Let me pose the question to you all...

It's the third snow day in a row.  Your twelve year old daughter with low functioning autism is very unhappy.  She has spent much of the day screaming.  She didn't sleep well the night before, and you finally get her to lie down with you on her bed for a possible nap.  As soon as you are lying down, however, she said "Do you want cheese?", which means she wants you to get up and get her cheese from the refrigerator.  You are bone tired, and she is perfectly capable of getting the cheese herself, and you say to her "If you want cheese, you go get it and bring it to me"  She reacts by screaming loudly and kicking you.  You...

A.  Start screaming back at her, telling her you are just about at the end of your rope, and that she needs to stop acting that way, and you are so tired of it all, and....so on.

B.  Overcome your aches and tiredness and get up and go get the cheese, knowing that might be the quickest way to get past this whole bit.

C.  Tell her calmly she can't kick you, and that you are going to walk away to let her cool down, and that when she does, you'll talk about the cheese.

You probably know what the answer is supposed to be.  However, A and B are pretty darn tempting, in the moment, and I may or may not have picked one of those choices yesterday when confronted with this very scenario.  However, I eventually accessed my inner magazine quiz self, and picked C, the "right" answer.  Janey's response?  As soon as I'd gone into the next room to let her cool off, she found a bag of chips, opened it and threw chips all over her bed, crushing the chips as she did so, so the bed was covered with chip crumbs.  I stood my ground and stayed away, figuring that chips can be cleaned up.  So she upped her game.  She ran to the TV and started pounding it with her fists, something she knew I couldn't ignore.

So...what next?  What't the right answer there?  Before you decide, keep in mind that Janey is as tall as I am now, and as strong.  It's not easy for me to physically stop her from doing things like the TV pounding.

The answer is that there isn't a right answer.  It's a "none of the above" type situation.  As happens fairly often in this life we are leading with Janey, we pick the least harmful wrong answer.  What I did was tell her to stop hitting the TV and I'd get the cheese, which I did, and which she ate a bite or two of before resuming her screaming.

I woke during the night last night, my mind racing.  I kept thinking "I'm not equal to this task.  I don't know how to keep going.  This is just impossible"  I finally woke Tony and we talked, and I calmed down, and woke up this morning ready to keep on trying.  I know in my heart I'm doing the best I can, that there really isn't any correct answers for some of the challenges we face as a family.  But boy, could we use some respite, some help, some something. Until then, we'll keep going, because that is always the default answer---just keep going, because there is really no other choice.

Trying to radically accept myself

Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance.  I want to accept her as who she is, not try to change her.  I want to delight in her special qualities, without the special being a "special" as seen in "special needs".  I want to be frustrated with her as who she is, not who society feels she should be.  I want her to be herself.  I read a good blog post about this today (read it here) and it got me thinking a lot.  I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.

Last summer, I spent a day being researched upon by the Framingham Heart Study.  If you don't know about them, it's worth following the link to find out more.  My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study.  It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan.  Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know.  About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.

That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests.  It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis).  Basically, that means my liver is inflamed and scarred by means of something other than alcohol.   It's a strange disorder.  No-one knows exactly why you get it, and there is no treatment.  It's just---there.  Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.

There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome.   The result is a kind of tiredness that is hard to even explain.  I wake up fine, and I'm fine for about three to four hours.  And then I get tired---so tired that I almost always have to take a nap.  I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.

As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself.  I hate the tiredness.  It makes me feel like a lazy loser.  I get so little done.  I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse.  As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness.  I don't have to hate myself for it.  I can do what I want to do for Janey.  I can radically accept myself"

It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying.  That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to.  If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home.  My health issues are part of me.  They are part of what I need to accept.

I debated whether to write about all of this here.  But I write about Janey, and I want to be similarly open about myself.  It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.

I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago.  I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too.  It's a work in progress.

What I am tired of

I'm tired of being on edge 24 hours a day, 7 days a week.  I'm tired of never, ever being able to fully let my guard down.

I'm tired of cleaning up messes.  I'm tired of changing sheets, always having a huge pile of blankets waiting to be washed, tired of the type of pull-up disaster that still happens way too often.

I'm tired of screaming.  I'm tired of not knowing why the screaming is happening.

I'm tired of reading about possible causes of autism, which all seem designed to make me feel guilty, because it seems like every single one is something I've done or taken or not done or not taken.

I'm tired of rude people that stare.

I'm tired of worrying.  I'm tired of being scared that someone will hurt Janey when I'm not with her.  I'm tired of feeling panicked when Janey comes home from school upset, because I have no idea what might have happened to upset her.

I'm tired of the same episodes of the same TV shows, year after year after year.

I'm tired of not even counting on a full night's sleep.

I'm tired of dreading the future, especially the part of the future that will happen when I am dead and gone.

I'm tired of IEP meetings.

I'm tired of hearing about great new camps or lessons or programs or events that Janey can't be part of.

I'm tired of having to advocate.  I'm tired of having to figure out backdoor ways to get the services Janey needs.

I'm tired of feeling angry---angry at celebrities who have "cured" their kids, angry at politicians who don't even have the slightest idea what life with an autistic child is like, tired of feel-good stories about wonder dogs or magic trips to Mongolia or miracle breakthroughs.

I'm tired of being tired.  Physically tired, all the time, every single day.

Soon, very soon, I'll write about the joys of autism, or more specifically, the joy Janey brings me.  But today, I am tired.

A drink and a song

Last night, we decided to live it up a little and get some dinner out---some Burger King.  We ordered just what we felt like, because we are like that, living large, you know.  And then we ate it in the scenic lovely parking lot of the mini mall the Burger King was at.  I told Tony as we ate that I knew when I married him he'd take me some special places, and a night like the one we were having certainly proved I was right.

Seriously, though, we enjoyed ourselves.  I was thinking how in some ways, I'm pretty suited to the lifestyle that life with Janey brings.  I am not much into getting dressed and going out, I wouldn't really call myself unsociable, but I'm probably low-sociable, and I am as happy eating in the car in a parking lot as I would be in a fancy restaurant overlooking the ocean, most of the time.  We had a nice meal, joking around and people-watching.

At one point, Janey asked for a drink of Tony's soda.  He had a big diet Coke (he is a diabetic).  We don't usually like Janey to have soda, but in the spirit of a carefree night, we gave it to her without a lot of thought, and she had a nice big draw of it.

When we got home, it was the time Janey usually goes to sleep, about 7:30, but she wasn't sleeping.  She finally did go down about 8:30, which was fine.  In another example of just how we roll, we all went to sleep at that time, which is I have to admit a fairly typical bedtime for us.  We are just not late night people.

At four in the morning, Tony woke me up to say Janey had been up almost all night and it was my turn to take over, so he could get a little sleep before work.  I was happy to, but not happy to hear about the sleepless night.  We've certainly had them at times, but not too often recently.  There's two types of them.  One is the upset, screaming up all night and the other is the cheerful but demanding up all night, and Janey was in the second mode.  Every time Tony drifted into a minute or two of shut-eye (we stay up when Janey's up, but the human body can only take so much not sleeping and we drift off for minutes here and there), Janey had a new request.  So he was not in a good way.

Janey switched over to requesting things from me.  She watched part of "Journey to Joke-a-lot", a Care Bears movie that I think was designed mostly for late night college parties where there might possibly be some non-sobriety going on, due to its many wild colorful scenes of roller coaster type rides going through bizarre landscapes.  Then she asked for another show on the "big TV", but I told her it was time to lie down, and if she couldn't sleep, she could use her iPad.  That was a mistake, as it turned out her iPad was out of charge.  That is something Janey doesn't get at all.  I think she thinks we just every now and then decide to take away the iPad, to show our dominance or something.  We've tried getting her to use it plugged in, but she immediately unplugs it.  So she was ready for a meltdown.

Grasping at straws, and cursing the caffeine in the diet coke, consumed after 12 noon, which we have to be reminded over and over and over results in her not sleeping, I asked her if she wanted me to sing her a song.  She said immediately "Yes!" which startled me, as she isn't usually a direct answerer and she generally isn't that into my singing.  I asked her what song, and she said "Angels we have heard on high!"  Another direct answer, and I knew what it really meant.  I pretended I didn't, and started to sing the carol, and she said "On the big computer!"

For some reason, Angels We Have Heard must always be played through iTunes on the computer, with the visualizer on.  I knew that from the start, and I dragged myself out of bed and put it on.  And we listened and watched, the unseasonable song and the mesmerizing colors and shapes.  We listened together to five versions of the song.  Janey danced next to me.  Some of the versions required me to clap along, which Janey let me know by clapping my hands for me to get me started.  We skipped version six, done by Neil Diamond, and went to version seven, a VeggieTales version, proving that Janey doesn't always have great taste in music.  We wiled away the very early morning hours, until it was time to get ready for school.

I thought, after I'd had a little rest, that like the parking lot dinner, that sometimes what Janey wants and needs is similar to what I'd want and need.  I love hearing many versions of a song, and getting into the light show the computer provides, and aside from not quite wanting to do it when I'd rather be sleeping, I'd enjoyed myself a lot with Janey, having a drink and a song with a friend.  My life today isn't exactly what I'd ever pictured, but whose life ever is?  Life is what happens while we're busy making other plans, to quote John Lennon.  Having a child like Janey isn't in most people's plans, but it's life, and like any life, it has its downs but it also has its nights of drink and song.

How is Janey doing?

A lot of people have been asking me that question---how is Janey doing at home?  How is her recovery?

Well, it's slow but steady.  She is eating much better than she was, is drinking a good amount, her digestive system seems to be working well based on pullups, she doesn't seem to be in pain most of the time.  She hasn't had any fevers or signs of infection.  Those are all good things!

However, she is still what the surgeon told us to expect, "debilitated".  At the time, it struck me as an unusual word to use.  It sounded more severe than anything I pictured.  But it's actually a very accurate word.  Janey really is debilitated.  She still needs a huge amount of rest.  She spends a lot of the day lying down in bed.  She gets very tired after walking.  She walks hunched over most of the time.  She looks thin and pale.  She looks like what she is, someone who was seriously ill and in the hospital for a long time.

We are taking her out a little at a time.  This afternoon, we took her along when taking her brother William to work at Whole Foods, and took her in the store for a few minutes.  She usually likes Whole Foods a lot, but this time, she got extremely worn out quickly.  I wound up taking her back to the car while Tony checked out.  It's probably lucky that I've gotten used to getting stares over the years due to Janey's behavior, as we got stares.  Not because of her behavior, which was very quiet, but because of the careful and hunched way she was walking, and the fact we had to stop and rest a few times on the way to the car.  They are different kinds of stares than I am used to.  The behavior stares are more curious, more stealthy and sometimes a bit judgey.  These stares look concerned, unsettled.  I don't like either kind much, but I can understand these a bit.

Janey's behavior?  It is not back to normal, but there are shades of it.  She gets very upset when we tell her no, which we are not having to do a lot of---she isn't asking for much.  But when we have to say no, she screams quickly and loudly, intensely, and then it's over, like she knows she won't have the energy to cry for long.  She is biting her arm when she's upset, but she hasn't been aggressive to others at all lately, save one slap to my face a few days ago.  Mostly, she's like a tired version of her old self.  There is no jumping up and down, no running around, no climbing things to get what she wants.  She is watching a great deal of YouTube on her iPad, like in the hospital.

An interesting thing I've noticed is that Janey seems to appreciate little things I don't think she ever noticed much before.  When we first got home, and she was on her own bed, with her own blankets, she smiled the hugest smile you can imagine.  We were all gathered around, and it was a wonderful moment.  I can imagine that despite us trying to explain otherwise to her, she might have not been sure if she had permanently moved to the hospital, and she seemed thrilled that was not the case.  When she asks me to lie with her on the bed, and I do, she has been smiling at me with the sweetest, most loving smile I've ever seen.  She often wanted me to lie with her in the hospital, and there just wasn't room, and I think she loves it than now we can do that.

I can't imagine what has gone on in Janey's mind about this whole ordeal.  I've tried to explain it to her, and she can say "appendix", but I don't think she understands much at all.  To her, it must have felt like some odd kind of arbitrary torture at times.  I keep thinking of the times when she couldn't have anything by mouth, even water.  She would ask over and over and over "Water?  Water, please!  Water!" and we would have to say no.  It killed me to say no to that---one of the basic things a mother does for a child.  I am sure she had no idea why she suddenly had to be thirsty.  Then, when she wasn't drinking enough, we kept urging water on her, and she didn't want it.  She must have thought we'd gone some strange kind of crazy, or become suddenly cruel.  It is so hard to think about that.

I hope Janey is well enough to go to summer school when it starts.  I think she will be.  It's a slow road, though, and it's made harder by her autism.  I can't explain why she needs to try to stand up straight, or why her stomach might still feel weird, or why in fact any of the past month has happened.  But she is a strong girl, and I know there will be a day when this is completely behind us.  I am looking forward to that day.

Part Seven---Drain, drain, go away

Of the days we've been in the hospital, yesterday might have been the least eventful.  Janey ran a fever a bit, had some pain and got some morphine for it off and on, took some good naps and just hung in there.  The down side of yesterday was that she noticed her drains, and started to try to touch them and pull at them.  They are tubes coming out of her belly, with bags attached.  They drain out fluids (if you've stopped reading by now because you are a little faint, you are like I would have been before going through this).  Twice a day, a surgeon injects them with the same substance given to people who have had  a stroke.  This is to break up clots and keep them flowing.

Janey is trying to get at the drains off and on all the time now.  When she really gets going, we have to put a soft restraining thing on her arm with Velcro, which keeps her from using her elbow.  She always has one of these on the other hand, to cover the PICC line, as it would be very, very bad if she got at that, so I hate to cover her free arm, but I would more hate for her to infect the drains or pull them out.  The nurses are so wonderfully reluctant to use any restraints.  They try everything else first.  But at times, it's more important than anything else to keep her safe and healing.

This morning, we took Janey for a walk around, which is quite an operation as it's hard to get her to standing without causing her pain, and she gets tired very quickly.  But we walked to the child life room and she enjoyed looking at the fish, then we got a wheelchair and walked to another fish tank.  Then she was very tired out and we went back to the room.  It is hard to see that Janey is that sick, that a simple walk is almost more than she can do.

I slept the most last night I have in a while, thanks to Tony staying awake a lot.  It's strange that this makes me feel more tired today.  I think when I get a little rest, the adrenaline or whatever keeps me going stops pumping out, and I am not as able to run on fumes.

Talking to the surgeon this morning, we decided it was better that one of us be here for Janey during Freddy's high school graduation tomorrow.  I wish we could both be there, but Freddy understands, and we will have other friends and family there.  Tony is going to stay with Janey.  I keep thinking how Janey was born on Freddy's seventh birthday, and in some ways, he's been sharing the time for his big events since then.  He is an amazing brother to her, and we are so proud of him and of William.

So the story goes on.  It's a story that if you had told me two weeks ago we were about to start, I'd have not believed you.  And I do hope before too too long, it all again feels like a long ago, unbelievable dream.

Janey's burst appendix story---Part Six

When we left you in this continuing saga, Janey was off getting a CT scan to look for abscesses.  The CT scan was quick, and Tony went out to get a bite to eat when one of the surgeons came back to tell me that yes, it looked like Janey has multiple abscesses.  That wasn't exactly what we wanted to hear, but I am so glad they did look for them.  Her head surgeon came in a bit later and explained things to us more.  Janey had 5 abscesses.  She was going to need interventional radiology to put drains in them.  At the same time this was done, they would put in a PICC line to be able to give her nutrition, IV medication  and draw blood, without having to do lots more IVs.

Janey was taken down for the procedure about 2, strangely, a week right to the hour after she had the original surgery.  We signed more consents, and left as she was being put under, back up to her room to sleep (although I couldn't sleep).

The big question last night was whether I would go to her brother Freddy's Prize Night.  The night is the second biggest night in the six years at Boston Latin School, the school Freddy graduates from on Monday.  I have looked forward to the night for years, but never dreamt I would have to decide whether to go while Janey was in surgery.  After talking to the surgeon and to the nurses, I did decide to go.  Tony stayed here and promised to keep in touch with me by text, which he did. 

The night was wonderful.  It was held at an old church building on the campus of Harvard, a beautiful venue.  There was amazing music played by the string orchestra of the school, including a sad piece which of course set me to crying quite a bit, partly about Janey and partly from thinking of an era being over with Freddy.  My emotions right there were about as intense as emotions get.  Watching the prizes get given out was so interesting.  Everyone got a prize of some kind, and I was very proud that Freddy got two, both connected to his declamation (speech giving) skills.

Then it was back to reality.  Janey had come back from surgery while I was gone.  I saw her drains, which are a little scary to look at but not that bad.  They were able to drain 4 of the abscesses with 3 different drains.  One was too surrounded by bowel to be able to drain.  Hopefully that one will resolve on its own.  Janey was doing remarkably well.

Today, Janey isn't feeling quite as good.  Her fever is up a bit, which was sort of half expected, and she was in a bit of pain.  They authorized clear liquids, but she had just a sip of apple juice and later threw up.  Her stomach just isn't ready yet.

I have to say here how wonderful almost everyone at this hospital is.  The nurses on our floor are just plain amazing.  They are so kind, they care so obviously for Janey, they are knowledgable and competent and just...wow.  The surgeons have also been great, especially the surgeon who did the original surgery on Janey.  She listened to us, answered all our questions so well, and even remembered Freddy and answered me seriously and truthfully about going to his prize night.

And---Janey has been amazing also.  Overall, I can say there's been many times she's gotten far more upset over us saying no to a trip to the ice cream store than she has over major things here like having an IV put in.  She is alert and watches everything, and is learning new terms.  Today, she said "Want to call the nurse?" as I picked up the control with the nurse button, and she has started calling her stomach area her "belly" as she has heard them do.

Sleep is the toughest thing.  We got some last night, but I am living in a constant state of tiredness.  Often, also in hungriness, as I don't eat the room since Janey can't, and it can be hard to find time to sneak out and get something to eat.  This may be the most effective diet I've ever been on.

Writing in this blog and hearing from all of you truly is keeping me going.  I need this writing more than anything.  I don't think I'd ever remember these days clearly or be able to work through them in my head without it, and it's a fantastic bonus to be able to share Janey's story.  I hope none of you ever have to have your child with autism in the hospital for an extended time (or any child at all!) but I hope if anyone does, my writing will help a little.  So I will close for now, until part seven......

Incredibly Little Sleep

How little sleep can people survive on?  Janey seems to have taken on that question with a vengeance lately.  She is sleeping less and less and less.  Since my chocolate vow, she's had no chocolate, and she seems less manic and much happier, but whatever was affecting her sleep is still affecting it.  The last three nights, she has slept about three hours a night.  She goes to sleep around 10 and wakes around 1.  Then she's awake the rest of the night.

We have taken all the steps we can think of to deal with this, of course.  We unplug all media at night now, so she can't watch TV or YouTube.  We lock the doors, which for now keeps her from going out of the house.  She is on medication that for most people, would cause better sleep.  We have tried melatonin.  We've done what we can think of, but still, she just isn't sleeping.

And of course, neither are we.  I think I sleep some in minute-long bursts, because I can't help myself, but in general, I'm awake.  Tony is home this week on vacation, and so I'm napping during the days and letting him get some sleep he needs.  Janey is going to summer school, and she is happy with that---hopping on the bus cheerfully and coming home in a good mood.  Unless they are letting her sleep all day at school and not telling us (which I doubt is the case), she's up all day, and for the last few days anyway, perfectly happy.

Deprived of TV during the night, Janey uses her resourcefulness and recites videos.  She walks around in a loop, through the kitchen, living room and bedroom, reliving Kipper episodes, mostly.  She says the same lines for ten or fifteen minutes, and then switches.  She goes to sleep in her bed, but during the night, comes to our bed and wants us to go to her bed.  We try not to do that, but when you haven't slept for hours, anything that might possibly help her sleep can start to seem pretty appealing, and so we do a bed swap, until the next time she decides to switch again.

From what I've read about manic episodes, I do think that might be what these sleepless periods are.  Janey seems to have endless energy during them, and her mind seems to be in overdrive.  She talks non-stop in delayed echolalia.  I think in the middle of these monologues is when I catch a moment of sleep, and then when she pauses for air, I wake up to check what she is doing.

Somehow, even this incredibly little amount of sleep isn't as tough as the days when Janey cries all day, but it starts to catch up with me quickly after a few days.  I am glad I don't have to drive any place, with Tony home.  I am not getting anything done during the day.  Words are coming more slowly to me even writing this than usual.  I'm living in a bit of a haze.

I don't think this will last forever.  We've seen this a few times before, and when Janey comes out of it, she sleeps a very lot for a few days---naps half the day and sleeps long nights.  We just have to get through it.  She's timed it well, anyway, to be during Tony's vacation.  I hope it's over by next week.  My biggest fear is that I am wrong, and it WILL last forever.  I am not at all sure how I could handle that.  I'm too sleepy to full think it out, which is probably a good thing for my sanity.

How's It Going? Various Answers...

I saw an acquaintance the other day in a store, and she asked "How's it going?"  I of course gave the answer you give in that circumstance---"Good!  How are you?"  But when I got home, I started thinking about how I am really doing.  There are two answers to that.

The first is the raw one.  How's it going?  Not well, really.  I am feeling more overwhelmed than usual lately.  This is probably directly related to Janey's sleep.  It's been awful lately.  Last night she slept from 1:30am to 5am.  That was it.  She is understandably crazy today, but still won't sleep.  We are to blame for the extent of this particular night's insomnia, probably, due to a lack of chocolate vigilance, but overall, her sleep has been awful.  A lot of days have passed in a haze that is caused by sleeping very little at night, for her and for us.

Her behavior has been volatile lately also.  It's the tough time of year, between regular school and summer school, when there is no rhythm to the days.  Both boys work, so sometimes they are home, sometimes not, Tony is now on vacation for a week (thank goodness) but last week, with the boys in and out and Tony at work during the days and Janey and me at loose ends---it wasn't good.  Janey freaked out regularly, and her freaking out is tougher and tougher.  It involves a lot of biting of herself, flailing around that often accidentally or not hits me with elbows or head, flinging things in anger, trying to break things, all that fun.  And of course screaming---loud, insane sounding screaming.  

I could do better with her, but frankly, a lot of days I'm too tired.  If I don't sleep, I am not in a good way.  This is the case for everyone, but I have a thyroid that barely functions, even on close to the highest dose of thyroid replacement given, and without sleep, I seem to exist in a zombie state.  I just try to get through the day.  So we do little things---a walk to the store, playing outside in water, watching YouTube, reading to her when she lets me.  The other day we went to a movie that the local autism agency, TILL, hosted.  It was the first time Janey had ever been to a movie theater, and she did fairly well---she lasted about 40 minutes.  That didn't exactly eat up the day, but I felt better having done SOMETHING with her.  

I think I've reached a point, after about 7 years of the autism parenting life, that I am depleted.  I am out of enthusiasm, at least for now.  I am not as able to rally any more.  I love Janey more than ever, and that love makes it even harder, because I am sad for her.  I am sad that she is so unhappy.  I am sad she is not making progress.  I am sad at the limits autism has placed on her life.  

However, the second answer to the How's It Going question is the one I need to focus on.  The boys like to talk about first world problems, and they are so right.  We have enough to eat.  We have a place to live.  We have medical care.  We have schools.  I have a wonderful husband with a steady job.  I have two sons that anyone on earth would be proud to have, sons with an unlimited and bright future.  I have books and word games and thousands of movies and TV shows I've never seen and would like to see.  I have my cats.  I have some amazing friends.  I have so many things that many people in this world will never have.  And to quote the kids again, YOLO.  You only live once.  Despite it all, I am extremely lucky, and that is the answer I should give when asked how it's going.  I can't say I always will.  I can't say I always remember how lucky I am.  Especially when I am bone tired, I forget, and I need to try not to.

Good Autism Mother vs. Bad Autism Mother

In my head, there's a long-running series "Good Autism Mother vs. Bad Autism Mother".   Any situation with Janey can trigger an episode, one of those staples of sit-coms, the same scene replayed with each mother getting a shot at handling it.  Here's an episode for you, entitled "Janey Wakes Up in the Middle of the Night Crying"

Good Autism Mother Version----

GAM, as I will call her, immediately of course wakes up completely, and rushes to Janey's side.  She is already searching her mind to figure out the antecedent to the crying---what caused it?  Because of course she truly believes nothing is just out of the blue.  Something is MAKING Janey sad, and figuring it out is job one!  While working on that, she comforts Janey "My sweetheart!  I am right here!  I will do whatever it takes to make you happy again!"  Janey keeps screaming.  GAM starts with a huge list of ways to help.  She sings sweetly to Janey.  She rubs her back.  She pulls out a communication program on the iPad to help Janey say what is wrong.  She assesses Janey's possible level of hunger, and fixes her a nutritious snack if there's any hunger possible.  She speaks to Janey in kind, measured, reasonable tones "You seem very sad.  How can I help you feel better?"  If nothing seems to work, she assumes that the problem is that she herself, GAM, has not yet figured out what caused the crying, and that she just has to work harder at it.  She never, ever thinks for a minute about the sleep she isn't getting.  She stays by Janey's side for 2, 3, 4 or however many hours.  She doesn't wake up her husband and beg him to take over.  She is patient, calm, loving.  Eventually, when it's almost morning and almost time to get Janey ready for school, Janey falls back asleep.  GAM doesn't grab some sleep them---oh, no!  She gets Janey's clothes ready, organizes her backpack, does some light housework and then gently wakes Janey up to start the day.

Bad Autism Mother Version---

Upon hearing Janey's cries, BAM pretends she doesn't hear them.  She pretends to be fast asleep, hoping her husband will get up instead of her.  If he doesn't, she yells out quite loudly "Janey!  It's the middle of the night!  Go back to sleep!"  This won't work, of course, but maybe it will wake up her husband so she doesn't have to deal with the whole bit.  He doesn't wake up.  Reluctantly, and thinking over and over how she is very put upon and stressed and nobody understands her life, BAM gets up and goes to Janey.  She says "It's nighttime.  Go to sleep"  She never once even TRIES to figure out why Janey is crying.  She doesn't really care, at this point, when her eyes keep closing from the horrible lack of sleep.  Janey keeps crying.  BAM says "Hey!  How'd you like to watch some Kipper?"  Janey doesn't answer, but BAM takes that as a yes, and puts on Netflix to a Kipper episode both Janey and she can recite fully.  Janey kind of half stops crying to watch the episode, and BAM takes the opportunity to sit next to Janey on the couch.  She knows she can't sleep, because Janey will then tear the house to pieces, but she closes her eyes a couple times.  The night drones on.  Janey is still crying off and on.  Janey asks for soda.  BAM doesn't even consider  that maybe soda is not the best thing for Janey to drink in the night.  She just hopes against hope Janey will drink it and go back to sleep, so she pours Janey a glass.  Janey pours the glass on the floor.  BAM walks away, straight to her sleeping husband, wakes him up rudely and says "I've been up for hours.  Janey is driving me insane.  Take over right now"  BAM doesn't care that her husband has to work in a few hours.  She doesn't care about anything but sleeping.  She goes straight to sleep, leaving her husband to clean up the soda and deal with Janey.  Janey, as in the first version, goes back to sleep right about time for school.

I've got thousands of episodes like that!  But now I have to wake up Janey and get her going for school.  BAM is going to grab one last cup of coffee, though, before GAM takes over and gets Janey through another day.  Both of them wish you all the best of days.

24 hours without sleep

Remember all those times I said we'd had the toughest night ever with Janey?  Well, forget all those.  Last night holds the new record.

It really started night before last, which I wrote about here.  She slept very little that night, and woke up for good at 5:30 in the morning.  She wasn't extra upset or screaming a lot, just awake.  And Sunday wasn't a bad day at the start.  We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose.  We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it.  Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep.  By 10, when she was still going strong and starting to get cranky, I asked Tony to take over.  I slept a couple hours, and was woken up around midnight by Janey's screaming.  She hadn't slept at all.  Then the fun really started.  From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.

I can't imagine how tired Janey must have been at that point, but I know how tired I was.  I made coffee three times, in a desperate bid not to give into sleep.  She didn't even drowse off for a second---just screamed.  A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them.  She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream.  I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.

Tony got up about 4.  By that time, we were both in a state that is hard to even describe.  It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good.  But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take.  We kept counting the hours she had been awake.  Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it.  I don't think she really slept until about 6.  And she slept...2 hours.  Until 8.  She has been awake since then.

Today has featured a lot of screaming, with some quieter moments.  She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.

Where do we go from here?  I have no idea.  She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep.  I am starting to feel like they do very little.  We are giving her melatonin, which we have not found to do much of anything.  We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect.  As much as I was possibly able, I was consistent in my approach to her.  We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that.  Our friends and family are not up to taking her for a night.  The only respite we've ever found was a bust---not able to provide enough care for Janey.  I really, truly don't know what can be done to help her and help us.  I guess we just keep going.

Last night, in my desperation, I looked on Google for "autism" and "screaming".  Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming".  I am trying not to swear here.  I'm not a swearer.  But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night?  They try to figure it out.  What do the "experts" think?  That we just say "Boy, I can't stand that stupid screaming and crying.  Obviously it means nothing, so I won't try to interpret it!"  Maybe the most telling thing was that in my searching, I found several of my own blog entries from here.  It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers.  If you are one of those parents, I'm sorry.  I know what you are feeling, but I don't know what to do.  I don't think anyone really does, for what that is worth.

Night Note

It's about 1:30 in the morning.  Janey is awake.  Not an uncommon story.  Some nights, she sleeps, some nights, she doesn't.  Nothing much seems to determine which.  When she doesn't, of course we don't.  Of all the things that are hard about raising Janey, the sleep, or lack thereof, is one of the hardest.

What to say about Janey's sleep?  I can't be too profound, because my eyes keep closing.  I can say it's one of the hugest reasons I am glad I am married, because we can trade off in the night.  If I were a single parent, I have no idea how I'd even live.  If you know a single parent with an autistic child that doesn't sleep, do anything in your power to help them.  If you ARE a single parent with an autistic child that doesn't sleep, I wish I could help you.

Why does Janey sleep so poorly sometimes?  I don't know.  I can say until she was about seven or so, it wasn't as tough.  Sleep was one of the easier areas with her.  But something changed in the last few years.  Maybe she is more aware of the world around her, and when she wakes in the night, she wants to interact with that world.  Maybe it has to do with lights.  Janey turns on all the lights in the house when she wakes up.  When William was home, she woke him up every night by doing this, and I've been startled many times by lights suddenly going on.  Maybe it's her lack of being toilet trained---when her pull-up is wet, it wakes her up.  But most likely, it's just a part of whatever in her brain is different.

Not much seems to work with the sleep.  We have started giving her melatonin, after finally finding a kind that dissolved (we have to dissolve all her medication in water), but I can't say as it's done a thing.  The medication she takes at nighttime makes most kids sleepy, and it might help her get to sleep initially, which is not her problem, but it doesn't keep her asleep in the night.  Reasoning with her works as well in the night as it does in the daytime, which is to say not at all.  We can't leave her alone to play when she's asleep, any more than we can ever leave her alone for a second when she is awake.  As much as I wish there was a solution that would work, I don't think there is.

At least tonight she is happy.  When she is awake in the night and screaming, that is pure, pure torture.  Tonight, she happily asks for things---TV, snacks, books, songs.  Right now she is singing "Alloutte" at the top of her lungs, and saying hopefully to us "Want to sing that song called Allouette?"  Well, Janey, frankly, not right now.

Sometimes, during these middle of the night awake sessions, I wish there was no such thing as day or night---I wish that it wasn't conventional to be awake in the daytime, and I could just be up with Janey when she is up and sleep when she sleeps.  I do that, when I can, but in the real world, the days include obligations and work and driving Janey places and living a life.  But I guess this is living a life too---this is the life I've been given, and the life that Janey has, day or night.  And no matter how long the night is, eventually it's morning, and we start it all over again.

The Ducks Going Barefoot

I've always been prone to feeling guilty about everything.  My father used to use a phrase about it, saying I'd feel guilty about the ducks going barefoot.  And that's about true.  I feel guilty about things I have no control at all over, about things that I have no need to feel guilty about.  So it stands to reason I almost always feel guilty about some aspects of parenting, and, especially, parenting Janey.

This is coming up in my mind today because it's the first day of after-school.  After-school runs at Janey's school from 3:15, when school gets out, to 5:30.  We always pick her up at 5, though.  Last year, Janey wen to after school every day, and it was wonderful.  She enjoyed it most of the time, and I got a lot more rest and a lot more time to work and do housework and just recover.  I signed her up again this year for every day, and this year, Tony's changing his schedule a little so he can be home in time to take the car and pick her up, which is even better---I only have to do the tough city drive to and from her school once a day.  So why am I feeling so guilty?

Well, I guess it's because I know at least at the start of the year, the school day is long for Janey, and after school will make it longer.  I know she sometimes cries at the end of the day, looking for me.  And I feel in some very deep part of myself that if she is crying, she should be with me.  I was thinking about that this morning, and trying to understand that.  The truth is, I am not much better at keeping her happy than anyone else she trusts and loves.  In fact, I'd say she's usually happier at school than home, as there is more entertainment, more people to take a turn with her, more other kids, a big sensory room---she likes school a lot.  But if I think of her crying at after school and me not being there, I feel hugely guilty anyway.  Maybe it's because I feel like it imposes on people, it makes them have to take care of her when it should be my job.  Maybe it's because with a "normal" kid, a parent probably would be able to comfort her in ways others can't.  Or maybe it's just because crying hits me very hard.

But I've been thinking a lot of something someone said to me, on my Facebook page for this blog.  I wish I could remember who, so I could give them credit!  They said to keep in mind how airlines always tell parents to put oxygen on themselves first, so they can then better assist their children.  I try hard to internalize that.  I do need to stay strong for Janey.  I go in a few days to another rheumatologist, to try to get a handle on whatever it is that I have, but whatever it is, it makes me get very, very exhausted by midafternoon.  I need to rest then.  And of course, like my guilt about the poor little duckies without footwear, I feel guilty about needing the rest, but I do need it, and I will not be any good to Janey if my health gets worse.

I think many parents of autistic kids struggle with guilt.  We see people out there who seem to be doing so much more for their kids---the warrior parents, the totally accepting parents, the 100 hours of week of intervention parents---all of them.  It doesn't really matter that we probably know deep in our hearts that none of these stereotypes completely exist in real life, that many of us are just getting through the days with any crutches we can gather.  We know the autism isn't our fault, and most of us probably know that we are not going to be able to cure it.  We know we've been dealt a pretty tough hand, and we know we love our kids fiercely, but we sometimes need help, rest, respite.  We know all that, but still---we feel guilty.  And we feel guilty about feeling guilty.  I'm going try, just try, to not think about shoeless ducks, at least sometimes.

Crying----Why? What To Do?

Janey had a great day at school on Friday.  Today, she went to the "Treat House", the respite house, and went apple picking.  She was cheerful when we dropped her off and when Tony picked her up, and he didn't hear any reports that she was upset there.  However, a few minutes after getting in the car, she started to cry.  She cried all the way home, and kept right on crying.  She cried, screamed and cried, from 4 - 6:30.  As of this writing, she's falling sleep.

I wish I could truly describe what spells like this are like to someone who hasn't seen one.  It's hysterical crying, the crying of despair.  She hears what we say, based on an occasional echolalia word, but nothing we say helps.  Nothing we do helps.  We have absolutely no way of knowing what's wrong.  She doesn't say.  We can guess, and today's guess was that she was tired, as her sleep has been awful.  Last night, she was up from about 1 am on.  Not crying, but awake.  For much of that time, she lay next to me, so wired that she didn't even really rest her head on the pillow.  And then she goes off, apple picks, comes home, and of course she is tired.  But she doesn't sleep, and that doesn't always cause crying.  Is she hungry?  We offer her food, she might eat a bite or two, but then she continues the crying.  Her face is red, tears stream down.  She is desperately unhappy, and I can't help.  No-one can help.

At one point Tony took Janey in the back room to give me a mental break from the crying.  Janey screamed for me, and Tony said she needed to calm down first.  She got control for a second, said "I feel better" and he let her come to me.  Within seconds of leaving the back room, she was screaming and crying again.

I think the source of her sadness is internal.  But she doesn't have the words to explain that to us, or if it's not internal, to explain what makes her sad.  The combination of retardation and autism and probably a mood disorder leads to a situation without a solution, or one that I can find.

I am glad school is happier for her, but of course that is also hard for me.  I can't recreate school at home.  Home should be a happy place for her, but I feel like home is where she goes to fall apart.

Lately I am feeling out of ideas.  The crying, the lack of sleep---it's worn me down.  I am so happy school has started, but I feel guilty in that happiness, because I am sure it's almost more about just getting a break from Janey than being glad she's learning.

What do you do, when you've run out of ideas?  I don't know.  I've read some scary, awful ways people have dealt with that feeling lately.  Don't worry.  I would not ever, ever go there. But more and more, I am starting to see that long term, Janey might need more help than we can give her, as a family.  Getting that help is not easy.  It's very, very hard.  But so is the way things are right now.   I've always gone with hope as my answer---hope that tomorrow, Janey will be happier, that she'll be back to one of the delightful stages where life with her is wonderful.  Tonight, I'm having trouble drumming up that hope.  I'm down to hoping FOR hope to come back, tomorrow or soon.