The Post -"Lost" Post... or something...

What? Exactly.

I would be willing to bet that bloggers the world-over are writing about Lost today, regardless of what they might normally write about.  Well, I can do that too.  In a Planet Josh sort-of way.

This morning I look like what Lindsay Lohan looks like she feels like after a bad week.  My eyes are puffy and blood-shot, my nose is red and stuffy, my face is blotchy and I'm fairly certain it's going to take more than my usual one giant mug 'o coffee today to keep from nodding off randomly.  Josh's room looks like a debris field, as if it had been picked up and shaken like a snow-globe. Dude is here to clean the gutters.  I really need to go get my car emissions tested.  I don't even know where to start as far as putting Josh's room back together.  What I'd really like to do is take nap. Which explains why I am at the computer writing... 

Flashback: 10pm last night, the boys were settled to sleep and I had finished cleaning up Toadie's room and putting his bed back together.  Again.  He's recently decided that he needs to strip all the sheets off of his bed, pull the mattress off and then work on taking the box spring apart.  Every day.  So I have to put it all back together, every night.  So I got him settled in his room and sat down to watch the 4 hours of Lost that was busy TiVo'ing itself.  I had watched most of the series up until this season.  I had kind of a love-hate relationship with it.  It was certainly riveting but it was too hard every time they killed someone off and they did a lot of that.  It also just freaked me out sometimes - I'd be out late at night in the backyard with Buddy and suddenly he'd stop dead and just stare in to the woods behind the house, all I can think is holy crap, smoke monster!  Last straw was the nuclear bomb at the end of last season though, I decided I wouldn't watch this year, that was just beyond what I was willing to allow them as far as continuing the story after that.  But having followed it most of the first 5 seasons I decided I wanted to see how it was going to end.  Glad I did.  I did watch the 2 hour re-cap before hand, was nice to look back at the early years but it also got me up to speed on what I'd missed this season so I wasn't completely lost (ha-ha) watching the actual finale. 

Watch it I did.  I cried.  A lot. 

I am not one of those fortunate people who can cry and still look or feel somewhat normal.  Crying does a real number on me.  My eyes swell up, my nose gets flaming red and completely stuffed, and then I usually get a terrible headache.  So after 2 hours of this, I was not in great shape.  At this point it's just about 2am (yes, I fast-forwarded through the commercials of the re-cap episode but I didn't for the finale, I just let it run so it wouldn't be over as fast).  Throughout the night I had been aware of Josh over the monitor, every so often I'd hear him making some noises, sometimes laughing.  Sometimes he's just restless like that.  Sometimes it means he's going to be up.  Show was over, I was trying in vain to blow my nose so I could breathe and my head was pounding.  Josh starts laughing again.  Only this time, he is talking too.  Then I hear him get up out of bed. 

OK, so, we're doing this? Now? Fine. All I want to do is sleep off my crying hang-over for a few hours but Toad has his own agenda.  I grab my travel alarm and head up to his room.  Think I've mentioned before that sometimes when he's up at night I can get him to go back to sleep if I hang out in bed with him for a bit.  This is what I was hoping for.  I set the alarm in case we do fall asleep.  Hey, I'm an optimist!  I try to get him to settle back to sleep but he's not really that interested.  He hangs out with me for a bit, then gets out of bed, turns on the lights, and starts playing.  "Playing" for Josh usually means a lot of noise, be it from the toys themselves, his own vocalizations, or, dumping his bins out all over the floor.  There was a lot of this going on.  I stayed in his bed, hoping I could doze a bit while he played (I put a safety knob on the inside door handle so when it's closed, which it only is when he's asleep, he can't leave on his own.  It's the only way to make sure he's safe, if he were to wander around the house alone at night it would be a very bad thing.  If there were a fire I wouldn't want him leaving his room anyway, that would be even worse. I have the monitor so I always hear/see him).  Josh did his best to thwart my efforts.  Remember the "soup Nazi" from Seinfeld?  Josh is the sleep Nazi.  NO SLEEP FOR YOU!  For a while it was just his rambunctious playing and coming over to script with me, then it deteriorated in to a tantrum.  Sometimes he decides he really just wants to be downstairs.  It was still only about 4 am by this point, Zach has taken to sleeping in the loft these days so I knew if we went downstairs he'd probably wake Zach up with all the noise.  Plus I just didn't feel like changing Blue's Clues episodes every 10 minutes.  So I told him no, it was still night time and we had to stay in the bedroom until the alarm went off.  I don't know what of that he understands.  I do know he understands I wasn't taking him downstairs.  He was not happy.  So then I had angry Toad to deal with.  Eventually he settled back to playing.  Like around 5am.  So I dozed for an hour while he played, alarm went off at 6 and downstairs we went, it was time to get his brother up anyway.  I felt like I'd been run over by something.  An hour's sleep on top of all the residual crying issues, man, do I look terrible. 

Buddy flies by us at 90 mph as we head out to the car to get Zach to school.  Why?  Because he's Buddy.  At least he didn't knock any of us over this morning.  The state I was in, if he had, I probably would have hand-delivered him to the black smoke monster myself.  We get Zach to school.  Josh falls asleep in the car on the way home.  Oh sure, NOW you sleep.  Perfect.  So I have to wake him up when we get home.  Usually when this happens, he meanders in to the family room, curls up on the couch and falls back to sleep until I make him get up to get dressed and ready for school.  This morning, he decided to be annoyed and instead of going back to sleep, he had a minor tantrum.  I sat with him.  Now, I don't think I've explained about his comfort action yet.  When Josh wants to show affection or when he needs to feel better about anything, he likes to kiss your forehead.  Really more like pressing his mouth against your head, but you get the idea.  When he wants this, he says "head please" so that you will bring your forehead close enough for him to do this.  Occasionally, he asks me for "wrinkles"...seriously, he's the only being on the planet that could get away with that!  I have found in the last couple of years, that often when he is upset, I can help him calm down by just sitting quietly with him, letting him kiss my forehead as much as he needs, and often that will just make him happy again.  Don't know why, it's almost like it's a centering point for him, a connection that just helps.  So I did this, and sure enough, a few forehead kisses and he was all smiles.  Yay!  He was good then, so I got busy getting his lunch made and his clothes ironed.  Time to get him dressed and he is not only ok, but he's worked himself in to one of his hyper-giggly states, probably due to being so tired at this point.  He will sometimes get in to these moods where he is just laughing and giggling non-stop.  It's cute, and often infectious, but not easy to deal with when you need to get him to do anything.  It's a lot like trying to manage a tiny drunk person.  He's laughing and laughing and falling over and I'm trying to get him dressed.  We manage to get it together, Buddy launches out the door to the car once more and we get Josh to school, sleep deprived and giggling. 

Flash Forward: It's around midnight tonight.  I wake up on the giant crash pillow in the middle of Josh's room where I have apparently passed out asleep while trying to put the place back together.

Will he sleep tonight or will the cycle continue? If I blog about it, will it prevent a catastrophe?  If I give Buddy to the black smoke, will it stay out of my backyard?  Is Zach the guardian of Planet Josh?  Who will be his successor?  WHY IS THERE A HATCH NEXT TO THE SWING?!  

Think maybe it's time for that nap.

 

Sleep is for the Weak* (see also: How I Managed to Create my Own Psychological Disorder)

     Sleep is overrated.  The studies are wrong.  I am an exception.  I have adapted and evolved, someone should study me!  These are all things I have been telling myself and various appropriately concerned family members and friends over the years.  I'm sorry, what were we talking about?  Think I dozed off there for a minute...

     Ok.  I know that sleep deprivation is not unique to parents of autistic children.  It is, in fact, one of those rights of passage we all go through as new parents and then become somewhat patronizing about with those who are not yet - never admitting for a second that we are insanely jealous of those childless bastards who can still sleep in! (If you are following the blog you will get used to my sense of humor... I hope!).  It's like a club we all belong to and as much as we can complain about it, we often wear it like a badge of achievement.  "Baby was up 6 times last night and I am grocery shopping, doing laundry, at work on time AND brilliant as ever, I am Wonder-freaking Woman!" or Superman - yes, dads are sleep deprived too.  So I realize that at first glance you might think this is nothing new or I am preaching to the choir on this one.  I don't think so. 

     What I am talking about here is not your garden-variety, goes with the parental territory, sleep deprivation.  So what am I talking about?  Well, for the first three years of Joshua's life, he did not sleep through the night once.  NOT ONCE.  In three years.  At first it was the usual baby waking up at night deal, and this I expected.  But as he got older, and his issues started becoming more apparent, things changed.  By the time he was 2 and then for about a year and a half, I dreaded nighttime.  I've always been a night owl, but Josh would not go to sleep.  Not only would he not go to sleep, but he would get very upset about not going to sleep, and he would scream.  All night.  I would take him downstairs to try to minimize the disruption to the rest of the family, turn Blue's Clues on,  and he and I would be there the rest of the night.  Even with his show on, he would still be upset and scream most of the night.  By morning he would fall asleep for what would amount to a nap, but then Zach would be waking up - no sleep for me.  During this time, as his diagnosis was very fresh, I was all over the internet reading everything I could.  It was apparent that sleep problems were very common in individuals with autism.  One of the things I found was a study that had been done in Italy that had shown that autistic individuals either had very very low levels of melatonin or lacked it completely.  Melatonin is a naturally occurring hormone produced in the brain, that is affected by light and dark cycles.  You produce a lot of it when it gets dark out, less when it is light, leading to the relationship between melatonin and our circadian rhythms, more simply put, our sleep patterns.   So when Josh was almost 3 and a half at a visit to his neurologist, Josh's dad and I asked about this.  He suggested we could try giving Josh melatonin (a lot of people who travel use it to adjust to time changes, so it's readily available) at night to see if it would help him go to sleep.  The first challenge was to find it in a form that I could give to him - he was 3.  Luckily there was/is a company who makes it in capsule form.  So I bought those, started mixing it in a little of his almond milk and giving it to him in a syringe at night when it was time for bed.  One amazingly wonderful thing about my little toad, is that he has always been fabulous about taking medicine.  As long as it is in liquid form, or I can mix it into a liquid like the melatonin, he will take anything I can syringe into his mouth.  Wonder of wonders, it worked.  Put him to sleep usually within 20-40 minutes of giving it to him.  Wow!  After 3 and a half years, finally, he goes to sleep.  Well, keeping in mind that Zach was only 22 months when I had Josh, there was an additional couple years of new parent sleep deprivation going into it with him. 

     The celebratory high-fives were short-lived however, because though the melatonin was great at getting him to sleep, it did not keep him asleep.  Josh will be 12 in August.  Since he was 3, so going on 9 years now, his sleeping has been erratic.  He goes through cycles where he will simply wake up between midnight and 2 am, and he will be up.  Period.  Most of the time he does not go back to sleep.  Very rarely, I can go lie down in bed next to him and he will settle and go back to sleep, but more often than not, he is up, and I mean UP.  Looking at this in a positive light, it's no longer the long hours of him screaming like when he was younger.  Usually he is just incredibly hyper, loud, jumping and running around, playing with every toy that makes noise he can find, and, of course, asking for Blue's Clues and french fries.  If you are wondering if I have to get up with him the answer is yes, I do.  Developmentally Josh is hard to pin down, but for the most part he is like a toddler.  I still have a baby monitor in his room, a video monitor actually, and will likely have to indefinitely.  He is not like a typically developing child that could simply turn the light on in their room and read, play quietly, or just come to sleep in your bed if they need to do that.  His being awake and up at any time completely on his own would be unsafe.  So, I am up with him.  This does go in cycles, and so there are certainly periods of time when he sleeps perfectly well through the night.  I however, seem to have developed a sleep issue of my own.

     I don't sleep.  Much.  Over the years with all this, I have developed my own disorder of sorts.  I am not talking about insomnia, I have absolutely no trouble falling asleep.  I just don't want to.  Yes, you read that correctly.  I choose not to go to bed.  That doesn't mean I don't fall asleep.  I can nod off at the computer, watching tv, wherever.  But I will wake up and continue whatever I was doing instead of what my body clearly is telling me to do.  I'm like a stubborn toddler, you know, falling asleep at the table or in the middle of playing with something, and you tell them it's time for bed and the immediate response is "no! I'm not tired!"  It became so bad over the last 2-3 years or so, that I would stay up until 4- 4:30am, knowing that I would have to get up just after 6am to get Zach ready for school.  I have been living on 2- 3hours sleep.  What the hell is wrong with me?!  Well, good question.  Like I said, Josh does go through periods of time where he sleeps through the night just fine, so I can't blame it all on him.  So why do I have this compulsion, which is really what it has become?  I have theories.  I mean, I can tell you what I feel brought me to this point.  I mentioned before that I have always been a night owl and this has remained true even with the transition to parenthood.  I have never been a morning or a day-person.  I was a nurse before I had the kids and was used to crazy sleep schedules.  I was one of a small percentage of the women I worked with who actually preferred night shifts.  I think that has helped me cope with this particular piece of things.  Two things seem like the likely culprits in my seemingly inexplicable refusal to sleep when I should:  1. Josh's behavior being so unpredictable, I never know when he is going to go in to a not-sleeping cycle.  Somehow my rationale over time became one of "I'm more tired when I have been asleep and then I have to get up with him, so if I just stay up, then it's easier".  And 2.  Josh is very demanding of my time when he is awake.  All kids are to a certain extent, but if you have been reading this blog you are getting an idea of what it's like with him.  The Blue's Clues and the french fries requests don't tell you the half of it.  I spend all my time when he is awake and home looking after him and his brother.  Yes, they go to school.  But that time as most moms will tell you, is really not your own, even though it appears so to the uninitiated.  If you work, you are at work and that is certainly not your own time.  If you are a mom who does not work outside the house, then there are still household errands, chores, school obligations, doctor and dentist appointments for the kids, and the ever present threat of being called to come get your child from school because they are sick.  Which happens.  So between normal parent stuff and the added extreme of an 11 yr old who still needs me as much as he did when he was 2-3,  I don't feel like I get any "me time" until the kids are asleep.  

     I believe that these things together have lead me to the extreme I am at now.  I know it is not good for me, my family, friends, and doctor tell me this regularly.  I am working on it.  My body has finally decided enough is enough I think, because I don't seem to be capable of staying up until 4 or 5am now except occasionally or if Josh is up.  But this is a recent development.  I am probably getting 4 -5 hours of sleep a night now, compared to the 1-3 hours I was getting up till a couple of months ago.  So it's an improvement.  I know it's not where it should be but it took almost 12 years to get here so I imagine fixing this will not be an overnight thing...  pun intended.   :)

*Edit: Apparently there is a whole book with this title, not surprisingly a compilation of Mommybloggers' work, http://www.amazon.com/Sleep-Weak-Mommybloggers-Including-Finslippy/dp/1556527721 so credit where it's due though I honestly had no idea until today !