Mystery Silence Theater

My house, is not quiet.  Ever.  Well, rarely.  Aside from the non-stop Blue's Clues episodes playing on the tv in the family room, there is a veritable circus of sound happening here that you pretty much have to experience first hand to really comprehend.  I'll do my best to explain it though.

Josh may not have been talking when he was little but that doesn't mean he was silent.  He certainly made noises, just not words.  He went through a period when he was in his early toddler hood of growling.  Yes, growling, that's really the only way you could describe what he was doing.  It was a little odd, but cute at the time - this was before we had his diagnosis.  He has always made a lot of noise with his throat as well as hummed, still does.  A lot of this is probably sensory.  Over the years he developed some speech, though as mentioned in previous posts, it's very basic and limited to simple requests and scripting.  Doesn't mean he doesn't talk though.  He will go through periods of the day when it is non-stop, either asking me for things, or scripting, or both. 

He isn't just noisy when he "plays".  If he's looking at his books or pages, he's usually vocalizing somehow as well, often scripting, sometimes actually labeling the things he sees.  The scripting often requires me to participate, he loves it when you can script with him.  I know the episodes almost as well as he does at this point so he knows I can do it ("scripting", for anyone who doesn't know, is when he recites phrases from things he's heard, often over and over. For Josh, it's pretty much all Blue's Clues, though there are some scripts that he's made up himself, things he will say over and over in certain situations. If you are familiar with the movie Rain Man, Dustin Hoffman's character did a lot of this).  If he's happy or really excited about something, he gets very loud, sometimes giddy, going into fits of hysterical laughter that go on and on (these are kind of cute at first, but, you can't get him to do anything when he's like this, and he has been known to laugh himself into throwing up... ).  When he is happy, he often gives lots of hugs but he also will make his very loud vocalizations right in my ear, which is starting to actually hurt. If he's not happy, then it's the unhappy noises.  These are not nice, very loud, and I'm quite certain were designed with the specific intent of simulating a spike being driven into your brain because we'll do almost anything to make that stop if possible.

Aside from Josh himself, there are the toys. He has, over the years, developed a fondness for all things that make music and cool noises.  Lighting up is a bonus, but music and other noises are big.  Toy electronic keyboards rule, he also loves all the toddler-type toys that play classical and/or children's music but look like phones, MP3 players, microphones, cameras, etc.  We still have functional Blue's Clues electronic toys.  At any given time,  Blue's Clues will be playing on the tv, and Josh will have 5 of his toys going all at once.  He has a couple of favorites, one in particular is this... cat-piano-thing... it's a keyboard, but it's shaped like a big, fat, cat.  The songs this thing is loaded with are all about... wait for it...  cats (bet you didn't see that coming).  These are songs I've never heard before in my life, and, they are horrible.  I mean, seriously, I have a fairly hefty tolerance for all things that make noise and play kids music since I have been living with it for so long but I hate the music on this piano.  Josh on the other hand, LOVES it.  Very, very much.  He will put this piano across his body when he lies down to go to sleep and make it play these vile songs while he drifts off.  This thing as about 3/4 his own body length.  If I try to move it and he is not quite asleep yet, I am in trouble. 

Some of these toys, are possessed.  No joke.  I have been in the house, alone, and some of them just randomly do their thing without anyone there touching them...

Then, there's the monitor.  I have a baby monitor in Josh's room still, a video monitor actually.  I need to be able to hear/ see when he is up at night, but I also keep it on during the day in case he is playing in his room so I can kind of keep an ear on what's happening in there.  He has a white noise machine in his room for sleeping, so I hear it loud and clear over the monitor as well as whatever noise is happening. Playing, smashing and banging things if it's day-time, and every breath, snore, sleep-scripting, roll-over, dog spinning 180 times before lying down again, fart, scratch, hiccup, sigh, you get the idea here, if it's night time.  So the monitor is on all the time, unless he is at school.  This is almost 12 years now.  As a parent you go through that hyper-vigilant baby monitor phase with all your kids but as they grow and get older, you move away from that.  They become more self-sufficient and you can trust them to a certain extent - if your 9 year old gets up at night to get a drink of water, you can be reasonably comfortable in the knowledge that he/she will not be filling the bathtub and possibly drowning.  I can't do that. 

Between the monitor and Josh being unable to fulfill most of his needs on his own and frankly being somewhat destructive when he puts his mind to it, a great deal of the "noise" that goes on actually requires my attention, I can't just stuff it all into the background.  I try with the toys and the Blue's Clues but even then, I have to pay attention enough to know when an episode is ending because he doesn't like them to play through the ending and listen to his toys to know which ones might be low on batteries (though he seems to have figured out that's what they need when they start to not work and he will actually come to me sometimes with a toy and say "batteries" !). 

Of course there is Zach, typical kid, also, talkative kid.  I love him to death but I have to admit that there are days/times when he is chattering away at me and I can't take it any more.  Not him so much as everything.  I have on occasion, if my auditory nerves are fried due to the excessive demands placed on them, asked him to just stop and give me a few minutes for my brain to rest.  I explain that it's not that I don't want to hear what he has to say, it's just that there has been too much coming at me from an attention stand point sound-wise and I just need a little break to keep from losing it.  He's very understanding, though sometimes he will start talking again within a minute and I need to remind him that my brain needs a little more time than that to re-group.  I hate doing that, but it's that or completely lose it sometimes so I figure that is better and I always have him come back and tell me whatever it was he needed to when I'm feeling less assaulted in that way. 

I forget how much noise there is sometimes when other people are here and it is hard for them.  As much as my brother loves us I think he couldn't wait to leave the last time he was visiting with his family.  I don't blame him!  When you have your own little kids (his boys are 3 and 1.5 yrs) it's hard enough dealing with all the demands THEY place on you and the sleep disruptions from them, let alone the circus that goes on in my house at any given time.  They come anyway, and for that I am eternally grateful and love them all the more since I know it's not easy :)

Late night when everyone is asleep except for me is certainly as quiet as it gets here, and that is likely one more reason I tend to stay awake longer than I should.  Keep in mind, I still have the monitor noises, and recently both boys have started talking in their sleep, but it's definitely an improvement over day-time unless it's a night when Josh is up.  There is never really any silence though. 

Ahhh, silence, that elusive creature my senses crave, and yet, silence is dangerous in my house. First off, probably because I get so little of it these days, it sometimes takes me a while to realize that is IS in fact, quiet.  But if Josh is home and awake, quiet is usually not a good thing.  There are times when he will just be sitting quietly and looking at his books or pages but those times are infrequent.  Ironically, even though he can't button up his shirts, tell you which object is smaller, categorize anything, identify himself in a picture, or understand the concept of time, he does understand what most kids do -  best to be quiet when you are doing something you are not supposed to so as not to attract attention (cue evil laughter).  I know all parents have moments where they will realize it's quiet and with a start you race around to figure out why but with Josh it's a little more stressful.  What's he eating?  Oh yes, he won't touch most food that might actually be good for him but give him a staple, rock, soap, paper clip, paper, dog cookie (seriously, it happened at Christmas) and he's got it in his mouth.  That's always fun.  Or, what's he destroying?  This will actually be the subject of a future post, but suffice it to say that Josh is highly skilled in the art of taking things apart.  We'll just leave it at that for now.  You've already seen my problem with him stealing shampoo out of shopping bags and then using it liberally all over himself, his room, his toys, and I NEVER hear him do this.  My house smells like Suave Kookaburra Coconuts shampoo with just a hint of bacon-pop in the background... wanna come over? 

The only times I am awarded the gift of silence that is NOT concerning is on the very rare occasion that I go somewhere on my own for any length of time, like to visit my family in Vancouver for a weekend.  It doesn't happen very often, I can count on one hand the number of times since the boys were born that I have been able to do this, so it's a rare event indeed.  I do find that it takes me a little time to be comfortable with the lack of auditory over-load when I have been able to go away but it's definitely welcome once I make the transition.  Silence is golden - as long as I am not home and someone else is taking care of Josh. 


** a couple of notes: first, apologies for not getting this up sooner, Josh has done his best to thwart the creation of this post over the last couple of days. Also, for anyone who was wondering, Josh is back at school. Our meeting with the school staff and district went well for the most part.  This particular district has actually been very easy to work with compared to some others we've dealt with. **

Movers and Shakers

Individuals with autism more often than not have significant sensory issues, usually falling in to one of two overall categories: hyper-sensitivity or hypo-sensitivity.  It is also possible to have a combination of the two and this is true of Josh, though his hypo-sensitivity and the behaviors/needs that results in is the more significant of the two. 

When Josh was very young, probably around 18 - 20 months old, he developed stereotypies, which is the medical term for ritualistic/repetitive movements or behaviors commonly seen in people with autism and several other disorders.  This was right around the time we were having him evaluated for his developmental delays, but before we were really on the path toward his ultimate diagnosis.  I noticed that while we were sitting and looking at books, he would often stand up and with both arms flexed at the elbows, flap them repetitively.  This was sometimes accompanied by jumping in place.  It was odd and I had no idea what that was all about.  As I mentioned in another post, Joshua's dad is a pediatrician - he knew.  Along with some of the social shut-down we were beginning to see, it was the first real clue as to what was really going on.  We also noticed that he seemed not to notice pain very much.  When he would fall or bump into things and hurt himself like toddlers do at that age, he never cried.  It was really disconcerting.  The jumping and arm flapping behavior has never gone away, to this day he continues to do the same thing on and off throughout each day and it is usually accompanied by vocalizations of some sort.  It was also around that time that his "play" became more about moving than playing.  He would walk around the playroom, pick up toys and then drop them over his shoulder while he continued walking somewhere else.  He was always moving.  He also went through a long period of time where he had to be holding something in each hand.  Even today, more often than not when you see him he is carrying something.  There seemed to be a definite need for movement which has remained a constant.  I would say that he is probably moving 85% of the time he is awake.  Even with Blue's Clues on he is in constant motion, walking, jumping, gymnastics, you name it.  Oh yes, did I mention that he is phenomenal at hand-stands?  Entirely self-taught, I might add.  It's crazy, he can just flip over anywhere, any time and do a perfect hand-stand including holding it for a few seconds.  He'll even do them in the grocery store, which is always fun, but I would have to say it's the naked hand-stands that really steal the show around here!

When he started in Early Intervention, his physical therapy primarily involved sensation-oriented treatment, which when he was in his extreme tantrum phase, was one of the very few things that could sometimes lessen his distress.  He needed pressure, craved it even, and still does.  He has always liked having his feet rubbed but when I say "rubbed", I really mean acupressure.  If you are not pressing hard enough he will take your hand and squeeze it himself to get you to do so.  He has been doing this since he was pretty little.  He likes having his head squeezed, his arms, you name it.  When he had developed enough functional speech for it, he even started asking for "squeeze on", meaning he wants you to squeeze his arms or head, or feet.  He loves the pressure.  His classroom at school has a weighted blanket that he likes to lie down under.  We did try special body-suits to go under his clothes when he was younger (basically tight lycra-type material) at the suggestion of his physiotherapists, but oddly that never seemed to make a difference. 

We are extraordinarily fortunate, I think, that he is more hypo-sensitive as far as movement and touch go and therefore likes/needs that input.  He loves being hugged - well, it's mostly always on his terms, but especially these days, you can usually give him a big hug and he will hug you right back.  Which is the best feeling in the world.  There are many autistic children who are just the opposite and you can't touch them because they are hyper-sensitive. He loves being tickled, he loves being picked up and tossed around.  He loves anything that shakes, vibrates, bumps, anything that moves.  We even have a Brookstone massager that sits on the couch and we turn on so he can lie down and put his feet on it.  He calls it "buzzer" and will ask for it while he's going to sleep. 

As you can imagine,  amusement rides are pretty dope as far as Josh is concerned (what did I just say?!) and Disneyland is just a fabulous place to feed that addiction.  We've been 3 times with him, and for the weeks we've been there he's just in heaven.  Hardest part (we've always gone in January to avoid the long lines) is transitioning off the rides, he is not happy when they are over.  Once we get him through the first 2 or 3 though, he gets that we will move on to another one and is ok.  Anyone out there familiar with the Tower of Terror ? (which is actually at California Adventure, and I'm sure there is one at Disney World somewhere). I hate this ride.  I hate it with a passion.  I am afraid of heights and have terrible vertigo, so being dropped in a free-fall multiple times from 13 stories up isn't my idea of fun.  Especially since you only have lap belts holding you in on that ride, not the nice body-hugging full metal cages you get on most roller-coasters these days.  I won't even get on a ferris wheel (though I love roller coasters... might seem counter-intuitive, but if you think about it, they are always moving pretty fast, you are not sitting in one scary spot for very long). Josh, on the other hand, loves this.  First time we took him on it, he was giggling the whole time and didn't want to get off.  After the first time, no one else in the family will go on it again.  Not Zach, not their dad, certainly not the grandmothers who have come with us on 2 of the trips.  So hey, looks like I'm the lucky winner of the who's taking Josh on the Tower of Terror contest :P

Above all else, however, even better than Disney, there is one thing that reigns supreme on Planet Josh as far as his need for movement goes.  The swing.  Oh yes, he LOVES to swing.  He can and does if he has a willing helper, swing for hours.  He loves it so much we wanted to install one in his room, since you know, the Pacific Northwest can be a tad... wet....  a lot of the year, so being outside on the swing isn't always possible.  Unfortunately there are not the right kind of support beams in the ceiling of his room to have made this work so we couldn't do it.  Swing time is therefore taken to its extreme when he can get it, as I mentioned, we can be out there for hours.  He can swing himself these days, though not as well as when he is getting pushed so for the most part someone is always with him. 

Another behavior that has developed over time as an off-shoot of the sensory needs, is a curious one to say the least.  One day, during a speech therapy session several years ago, we were working with a toy that had plastic cookies to put in something.  He usually had his shoes off for his sessions, so that if he did get upset he wouldn't end up kicking with the hiking boots on and potentially hurting someone.  So he was sitting there, and just picked up one of the toy cookies and stuffed it down inside one if his socks.  Um, ok .... ?!  From that point on, this became a "thing".  Everything went in to his socks, while he was wearing them of course.  And I mean everything.  He would even try stuffing books in there on occasion.  He'll take one sock off and stuff it inside the other one.  Look out if he gets a-hold of any laundry, half of it will be in his socks.  He'll be walking around and you'll see some sort of large, bizarre shape in his socks, it's always fun guessing what he might have put in there this time, even more fun reaching in there and finding out (sometimes it's food)!  There are times when he will wad up a part of the sock he is wearing and jam that part between his toes before I put his shoes on.  He will also put things in his shirt on occasion, like at school if his shoes are on and he can't get to the socks, but the socks are definitely the preferred spot for putting pretty much anything you can imagine.  He just needs constant motion and touch stimulation.

I did mention that he was a bit of both so there are some things he seems hyper-sensitive to.  Light is one of them.  He is very sensitive to sunlight and does not like being outside on bright sunny days.  He will ask to be picked up and bury his face in your shoulder.  Of course sunglasses would help, but, this is a child who despite his need for certain types of touch, will not allow a band-aid to be put on him, ever, nor will he allow things on his face.  There is only 1 hat that he seems to be ok wearing but otherwise trying to get anything on his head, face, or skin that doesn't involve some sort of movement or pressure is not happening.  So he won't wear sunglasses.  I mentioned the band-aid issue.  Makes scrapes and cuts a problem, a pretty big one at that.  If I manage to get one on him, he rips it off within seconds.  I use liquid band-aid, but trying to get him to stop touching the affected area is pretty much impossible so that is often not helpful.  He left blood stains on the wall and on his blinds in his room from a cut he got on his finger a few months back that I tried to fix with the liquid band-aid but he would never leave it alone enough or let me hold his finger long enough for it to dry and really work, so it just bled.  I tried to get him to hold a tissue on it, but he would only do it for a few seconds.  He won't wear mitts or gloves even when it is freezing out.  I have taught him to keep his hands in his pockets, since he likes to do that, when it is cold.  It's better than nothing and I don't know what else to do.  We talked about the shoes, so strange given everything else he does involving his feet.  Noise doesn't seem to bother him terribly much unless it's very loud, like the vacuum close to him or a train whistle when we are close to it - those things make him cover his ears. He doesn't seem to mind my music though, which he and his brother are subjected to in the car on a daily basis (Zach is probably the only 13 year old who knows the words to songs by The Cure). 

Probably a fair trade for the Tower of Terror, right?  :)