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. **

It's Another Blue's Clues Day

     Well, decade at this point. To really know Josh there are a couple of things that truly define his persona. The one that is probably the most important is Blue's Clues. Children/people with autism have a tendency to become hyper-focused on certain things and Josh was/is certainly not an exception to that. Zach was 2 when Josh was a baby, and was just starting to be interested in some children's shows on tv. There were two in particular that he wanted to watch - Blue's Clues and Teletubbies (he was only 2, he liked it, HUSH :P ). There were some other shows that he grew to like over time, but those were the ones he was watching primarily for quite a while. Josh at the time, loved being near his brother. When he was only 6 months old, I noticed that he was actually watching the Blue's Clues episodes. He would literally sit in his exer-saucer and would focus his attention on that show for the full 30 minutes it was on. If you know anything about infant development, you know that this is not normal for a baby that young. At the time it seemed impressive, but we had no inkling that anything else might be going on.

     From that point on, his interest in the show never waned. In fact, it grew into an obsession. As time went by and his issues became more and more pronounced, it became entrenched into his life. Josh is verbal, but only to the point that he can request things that meet his primary needs (like food, Blue's Clues episodes, people he has a bond to, scripting, and naming objects). Communication will be covered in its own post later, but as it relates to this, about 90% of what Josh says is related to or directly scripted from, Blue's Clues. He can't tell me where something is, but he can recite entire episodes word for word. When you have him say "thank you", it will always be "thank you so much for your help today" which is what Steve always said at the end of the show. Salt in our house is always "Mr Salt". He will sometimes ask for episodes in his sleep. It's his whole world, it's always in his head. He adores the books. I have probably bought hundreds over the years. He spends enormous amounts of time looking at them. As a result they get quite worn out fairly quickly so they mostly end up as individual pages all over the house. I have toy bins in his room to keep them all when I pick them up at the end of the day. I can't bring myself to throw them out because he still likes to look at them. He will pick up a page that has to be 7 years old, worn, torn, and will carry it around with him and sit and look at it as though it were brand new. Of course the most exciting thing for him is when he gets new ones again. This is the bulk of any Christmas or birthday gift giving. He also loves the toys. Now, since the show hasn't been in production for several years (I cried when it stopped, because I know that it's everything to him, and eventually it will be very difficult to satisfy his obsession with it) it is getting harder and harder to find these things for him. The books for the most part are still carried by Amazon thank goodness, though some of the classic ones from the very early years you can only get via private sellers for hundreds of dollars. The toys are a different story. E-Bay always has a few, but for the most part I just have to rely on praying that battery replacement will be enough to keep them going for as long as possible.

     Of course then there's the actual show. I believe I have every episode ever made, across several different media - store bought DVD's, home made DVD's, TiVo, and yes, VHS tapes. There ARE many episodes he won't watch, for whatever reason. But he will on occasion ask for one that he hasn't watched literally in years, so I can never rule anything out completely. This does pose several problems. VHS players are practically extinct these days. I know I can record those episodes on to DVD's, which I have with quite a few of them, however Josh is so particular about this that he will even specify which medium he wants. For example, I have the episode of Blue's Birthday on VHS, store bought DVD, and TiVo. He will very specifically tell me which one he wants, and there are some episodes that he will only watch on VHS. So I have to keep them. Recently the VHS part of our DVD/VHS combo player broke. So after some searching I did find a wonderful machine, by Panasonic, that is a Blue Ray, DVD, AND VHS player and it will up-convert the DVD's and VHS to 1080 dpi which is pretty nice. But it will need to last us a long time, since it was hard enough finding a VHS player now, I imagine it will become impossible in the future. Aside from the technical difficulties, his incorporation of this show into his being means that it is on in my house almost continuously. This is going on 12 years soon. Yes, really. It's a good thing I like the show, I have nightmares when I think that it could just as easily have been Teletubbies....   !  He doesn't even really sit and watch it, well he does that, but more often than not it's background. I think he needs it always in the background. He can be upstairs playing in his room and if the episode ends or if he wants it to start again or heaven forbid someone turned it OFF, he will start asking for it again, from upstairs. Now, I realize that many people who read this are going to wonder why I allow this. What you have to understand is that Josh is not like you and I or his brother. You cannot reason with him because he does not understand and his tantrums are not at all easy to deal with. At a certain point, like with all children, you know you have to pick your battles. Some things are worth fighting for, some, are not. At what cost do we draw a line? That is up to each family and what works for them. There is a tv in the loft for Zach to use for watching, or his console video games if it's a weekend, so Josh's domination of the tv in the family room is not taking away from Zach. I don't watch tv much and when I do it's after the kids are asleep for the most part. At this point I think we are all so used to it, it's just a part of the background noise for us. Where it is somewhat disruptive is the fact that it requires me or Zach or whoever is here and capable, to manage the media center. It's not always just an issue of putting on a different episode. Sometimes he wants the one he's watching re-wound or to start over, sometimes you have to ff or rw through a VHS tape to find the one he wants, you have to search through the library of tapes, DVD's and TiVo episodes... I have actually catalogued all the episodes on the VHS tapes, home made DVD's and TiVo to make them easier for someone other than myself to find. That took a long time :P But it helps. The other time it's more of an issue is when people are visiting. Since we've been living with it for as long as we have, I often take for granted that other people may have a harder time with the fact that Blue's Clues is pretty much on non-stop here while Josh is home and awake. Ok, sometimes it's Little Bear, he likes that too. :) But you get the point. You can on occasion turn it off and be persistent enough that he will stop asking for a while, but that is not always possible. I put the counter on the blog to actually keep track of how many times each day I have to go to the media center in the family room to handle a Blue's Clues request of some sort. It's one thing to tell people he asks a lot, it's another thing to really see what I'm talking about in terms of numbers.

     So between the scripting, books, toys, shows, the quilt on his bed and his backpack for school, Blue's Clues is an integral part of Planet Josh and at this point it doesn't look like that will ever change. I am not sure what I will do when he is older, and these things are harder to get if not impossible. This is one of those "I can't go there" subjects (there are quite a few of those). Right now I just take it one Blue's Clues day at a time.