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.



     Hello and welcome to the blog :)  My name is Sarah, and I am the mother of two boys, one of whom is severely autistic. For a long time now I have been thinking of writing about this. I initially had something more substantial in mind, but my very intelligent big sister suggested I start with a blog and I decided that was a great idea.

     Autism has certainly garnered a great deal of attention over the last 10 years and rightly so. However, I find that most of that attention is focused on one of two things. We see the "success" stories or we see the arguments over what may or may not have caused it. Don't get me wrong, I think it's wonderful to draw attention to the positives or when people have been able to do things that have helped their children in significant ways. I also do not have a problem with people expressing their opinions or fighting for their beliefs. However, I do feel like what has been missing is the reality of this for many of us. As a parent, I would often feel guilty when I would see news stories or read books about people who "cured" their children of autism, or recovered them significantly - because that hasn't happened with Josh. We tried many, many things and he has been receiving interventions or therapy of varying intensity and focus since he was 19 months old. I believe that for many of us, the big success stories aren't the norm and we shouldn't feel alone or guilty because of that. So part of this is to share with you my family's reality of life with an autistic child. I'm hoping that this will be of interest to many people, not just those in my situation. Chances are if you haven't yet, you likely will someday, run into someone whose life has been affected by autism in some way.

     What this is: with as much humor as possible (hey, laughter is GOOD!) it's a look at the day to day strangeness that is Planet Josh. What this is not: a place for political debate or to argue over things like cause or treatment modalities. We all have our own opinions and our children are all different and there are places where you can argue to your heart's content about those things if it's important to you. This is not one of those places :)  Here is where you can come to learn, laugh, maybe cry, relate, share, or spend a few minutes because you couldn't find anything better to read. Whether you are a parent, relative, teacher, health care professional, friend or just interested in how my life might be different from yours, please, read on.

     For a while, the posts will be focused on getting to know Josh. You can't really understand this planet of his until that happens. Since this is my first foray into the Blog-o-sphere, I imagine the site will evolve over time. So be patient, stick with me if you can, and I will do my best to make it work.


ps. the "counters" on the sidebar will make more sense after you read my first couple of entries.