So This One Time at the Auto Mechanic...

This is my car:

Hey, car.

Hey, car.

Car is now 8 years old and has put up with a lot of abuse over the years. But it does its job well, hauls as much as we can throw at/in it, and, I like driving it.

Over the last couple of years it seems to have become self-aware enough to have decided that many parts of it have secret expiration dates that only it knows about.

Fair enough.

A few months ago, however, something felt very wrong to me out of the blue. Couldn't really explain it, it was just... wrong.

So I took it in to Car Fixing guy, who keeps my baby for a day and tells me that from what he could tell, something has been chewing through some of the wiring on my car.

Uh...

image courtesy of wallpixy.com

image courtesy of wallpixy.com

And apparently the chewed wiring included the bits that tell my car it's a 4WD.

So now it's only 2WD. Sort-of.

Hence the "wrongness" I was feeling whilst driving.

You might be wondering at this point why I'm writing about the Xenomorph attack on my car on the blog about Josh. If you're not, what the hell is wrong with you?

Patience, grasshoppers. It's coming.

Turns out that the culprits here were not actually bad-ass, teeth-wielding Aliens - which would have made this a much better story, by the way - but something a little less exciting and, frankly, a lot more annoying.

image courtesy of wired.com

image courtesy of wired.com

Jerks.

And yes, mice were eating my car. This is not something I've ever experienced before, even in places were my car was always parked outside, as it is here. I am told however, that this is common on the island. Seriously? "Oh yeah, the mice totalled my car last year".

Ok then.

Note to self: next time we move make sure to ask about car-eating rodents.

ps. we moved to an island.

ANYWAY, now that I have been fully briefed on the potential hazards of life on Auto-Munching Mutant Mice Island, car still needs fixing.

The morning of its admission to the car hospital to get its 4WD back and a rabies shot, I loaded the boys up to drop them at school first.

As I was closing the rear hatch, there was this... noise. It sounded like something inside the hatch had broken in to a million pieces, and all those pieces were falling down as the hatch closed.

Zach and I just stared at each other.

"What was THAT?"

I had no idea. So of course we tried opening and closing it again just to make sure we weren't hallucinating.

Nope, not hallucinating, there's the million-pieces-of-petrified-mice-and/or-their poop sound again and yes, that is exactly what I was thinking.

Luckily the drive to school is only about 10 minutes - Zach couldn't get out of the car fast enough.

I get the mouse version of Watership Down to Car Fixing Guy and inform him of this new development. He promises me he'll check it out after they deal with the previously identified carnage.

Richard and I head back later in the day to pick-up my fixed and (hopefully) exterminated vehicle.

As we are walking toward the garage, Car Fixing Guy sees us, gets a funny look on his face, and runs in to a back room.

He emerges with a look of both triumph and confusion. He says, "We took the rear hatch apart for you to see what was happening. There was something in there alright, but we've never seen anything like this before... ever... "

As he is finishing his sentence, he holds up a large (gallon-size) Ziploc bag.

The bag is full.

Of these:

So... this is better than mice junk... right? image courtesy of nourish-and-flourish

So... this is better than mice junk... right?

image courtesy of nourish-and-flourish

Richard and I stared in disbelief at the giant bag of peanut M&M's for about 3 seconds before we both said "Josh... " and then burst out laughing.

Car Fixing Guy was really confused now.

So, I'm sure I've mentioned Toad's love of candy and how I will resort to handing it to him when the situation calls for it. Mostly this happens in the car, if he's really unhappy. Since someone else I know also really likes candy, and particularly peanut M&M's, that's what I've had on hand.

But how on earth did they get from Josh's hands, to the INSIDE of my rear hatch???

It's a mystery...

Professor Moriarty, I presume? LET THE GAMES BEGIN!

Professor Moriarty, I presume? LET THE GAMES BEGIN!

Toad sits in the middle row, right behind the driver's seat.

This, is the rear hatch:

Because I'm sure you've never seen one before...

Because I'm sure you've never seen one before...

Which at first didn't appear to have any connection to the inside of it.

Ahhh, but then I saw these:

See that black sort-of corrugated tube coming out of the side and then attaching to the hatch?

See that black sort-of corrugated tube coming out of the side and then attaching to the hatch?

There are two of these and they are the ONLY connection that actually leads to the INSIDE of the hatch itself.

Ok, we found the exit point. There is absolutely no other way inside the body of that hatch.

So where's the ENTRY?

Because we are super-duper smart, we knew it had to be close to where Josh sits. I know right? It's like we're geniuses or something.

But where? Lightning strikes a second time as we realize that the wayward M&M's could not be moving UP  that door panel to the connector spot, so they had to be coming DOWN from inside the roof.

This clip is taken from the NOVA PBS series "THE ELEGANT UNIVERSE' and is used under the provisions of the Digital Millineum Copyright Act of 1998 (Title IV). Brian Greene guides us through Newton's discovery of gravity to the explanation of it, through Einsteins Theory of Relativity.

But how is he getting them in the ceiling? HOW?!?!

Oh hey Mr Ceiling seat-belt, what's up?

Oh hey Mr Ceiling seat-belt, what's up?

I don't know, I don't really think you could...

Well there's that...

Well there's that...

Josh routinely reaches up to pull that middle belt down and play with it. Also, apparently, to squirrel away his M&M's for the winter.

Wait...  I DID NOT SAY SQUIRREL!

You rang? Also, the mice tell me your car is made out of nuts and rainbows. I'll be moving in tomorrow, so could you get my room ready? ps. I don't really like the blue ones - Kirby

There But for the Grace...

In honor of Mikaela Lynch, Owen Black, their families, and every family who has experienced the unfathomable pain of losing their autistic child because they wandered/eloped/ran/slipped away in that heartbeat they can never get back.

I have more "child proof" gear in/around my house now than I did when the boys were toddlers. There is a safety knob on the inside handle of every door that leads to the outside. For the slider we have an old broom-handle that we can put in the track to keep it from opening. In several places we have had to change the type of handles our doors have in order to accommodate the safety gear. In the house we lived in before, we had an alert chime set up with the alarm system so that any time an outside access door was opened, we'd hear it no matter where we were in the house. That was not because we were worried about people getting IN to the house - it was because we were worried about Toadie LEAVING. Our current house does not have the door chime but it's on our list of home improvements.

And we're lucky because Josh has not figured out how to get around these safety measures. Yet.

When Toad was 5 I started to worry about the possibility of his wandering off. He's never been a "runner", as some autistic kids can be - fortunately he has never put any real speed in to his leaving. But he still leaves.

I spent the next 3 years working on getting him a service dog. One that was trained to track - as in, search and rescue tracking - so that if Toadie ever did become lost, we could save precious time by being able to track him with the dog ourselves.

I still sleep with a baby monitor in his room/on my night-stand, so that I can get up if I hear he's awake at night (which happens often) because he would not be safe awake on his own, even in the house. Because he gets in to things he shouldn't no matter how careful we think we're being, he is very skilled at that. And one of these days, he will figure out those safety knobs. I'd rather it not be in the middle of the night while the rest of us are sleeping.

Josh is going to be 15 this summer. And I STILL SLEEP WITH HIS BABY MONITOR on.

When we first moved to this house at the end of last summer, my desk/computer were downstairs, but Josh's room and all of his things were upstairs. Logistically this was the only way it could be. I tried to make this work for a while but it became obvious very quickly that I could not leave him alone upstairs for any length of time. So I ended up buying myself a laptop so that I could still write/work and keep an eye on the Toad as well. Not everyone has that luxury and I'm thankful that I was able to. But these are the kinds of things you have to manage.

I know people who've had to turn their homes essentially in to prisons, padlocking doors on the inside at their highest corners, putting bars over windows, all in efforts to keep their autistic children safe.

And these things don't even scratch the surface of the amount of vigilance that is required of most parents who have kids on the spectrum prone to leaving. All parents know what it's like to have a baby or young toddler around, completely dependent upon you for their safety and well being. What is not well understood by many people is that unlike a typical child who can be taught to be safe, understand hazards, follow instructions and communicate, as they grow and mature, many autistic children can't be, even as they get older. Which means as their parents we have to maintain that intense vigilance for longer than most, sometimes indefinitely.

Naked? Absolutely. As I've mentioned here many times, Toadie's preferred state is undressed. So reading the story about Mikaela didn't strike me as unusual or strange at all - it was not wrong nor concerning nor any kind of parenting issue. It's just what some of these kids do. Josh tried to strip in the middle of his first high school assembly this year.

Water? If there's any to be found, Toad will be there. I know that some autistic self-advocates do not like it when generalizations are made about "autistic people being drawn to water", because, not all of them are. However, for my part I can tell you that it is true of my son and it does seem to be the case in what appears to be a significant number of others. Josh loves water. He loves being in the water, and he loves just being wet. Especially if he has clothes on, wet clothes make for an awesome Toad sensory experience. Wet clothes also make you heavy, especially if you are already in water. Toad cannot swim - and at least as of now, can't be taught to. His developmental delay/disability is too significant, not to mention the communication issues. So if he's in water, he needs someone bigger, stronger, and responsible hanging on to him. I was holding him in a pool once, in about 4 feet of water and he pushed himself out of my arms and sank like a stone. I was right there with him so luckily I was able to just reach down and bring him back up immediately but it was a very vivid and clear message as to what would happen if he were ever alone.

So these two most recent losses hit close to home. Very close.

And I say most recent because sadly, heart-wrenchingly, this happens several times a year.

Do you have any idea what it's like making sure that someone has their eyes/ears and in some cases hands, on your child 24/7? Unless you have a child that needs this kind of attention, you do not. And if you do not, you are in NO position to judge anyone who DOES. Our kids are unpredictable. You never know when they will do or try something that they've never done before. You don't know if your child is one who will leave until they do it the first time.

I'm not looking for a medal. I'm not looking for sympathy either. Frankly, I'm not convinced I'm any good at this and certainly not any better than anyone else, whether they're parents of autistic kids or typical kids. I wake up terrified from nightmares where I've lost Josh somewhere. I'm not saying that for dramatic effect, it's true. I don't very often dream of familiar people or places or events, but not being able to find Toad is the stuff my worst nightmares are actually made of.

But you do what you need to do. It's just part of being a parent. Most of us are doing the best we can.

What I'm hoping for is some acknowledgement that losing a child is the worst thing that can happen to any parent. No matter how it happens. Honestly, I don't know that I could go on with my life if I ever lost either of my kids. But parents of autistic kids who escape have to live at a Def Con level of 1 every minute of every, single, day. 

And kids like Mikaela, Owen, Josh, and so many others, can be in your sight one minute, and gone the next. Literally. Unless you've experienced it for yourself you can never truly understand. Try to imagine it. Put yourself in our place. Try to imagine your life if you had to watch your kids like we do. How do you go to the bathroom if you are alone with them? I only get to go alone when Toad's at school, or there are other people available to watch him. What if you have things to do, as most adults do? Home repairs, other kids that need attention... ? THINK ABOUT IT. Think about every thing that you do and then think about how you would manage your life if you also had to make sure that your autistic child wasn't wandering or running off somewhere every moment. Not a toddler who isn't going to move very fast or far, but a kid. Who can walk or run. Who likely won't come if they hear you calling. Who won't stop. Who you can say "stay here" or "don't go outside without mom/dad/whoever" to 8000 times and they leave anyway. Who you try to explain danger to and it simply doesn't seem to mean anything. 

Walk a mile in our shoes.

And maybe try to be human and have some empathy for these parents, and all of those like them instead of making assumptions, casting doubt or accusations, and judging.

My heart broke into a million pieces for these families just as it has each time I read/hear of this happening. I can imagine what it must be like for them all too easily. I panic about Toadie and all I want to do is put him in a big bubble that has a tractor beam permanently focused on it. 

But we have to be able to live. Toad and other kids like him deserve to live full lives that include all kinds of experiences, we can't keep them locked-away. 

I've written this because there have been some awful, ignorant, and flat-out hateful things written about the parents of these children. This is a difficult issue for families of autistic children and one that is not easily solved.

Casting accusations, harsh criticism and judgment are not the answer.

Much love to the Lynches and Blacks right now. There are many of us who understand.

And who know that there but for the grace of whatever we believe in, go we.

IMG_0028.JPG

Everything Toad is New Again

So. How do you like the new digs?!?

As Toad is growing-up it only seemed right the the blog should too and now it has company - feel free to peek around, this place is pretty big! I have been wanting to write about more than just autism-related things for a while, so I think these 4 blogs should take care of that nicely. Yes, I'm serious. No, I'm not on drugs... unless you count coffee (we live near Seattle, the stuff is practically in the water here, so you know, that works for me).

I'll give you a quick run-down on the other blogs, then I'll treat you to a good Toadie story.

The main page is pretty much where I will write about anything. Current events, politics, social/cultural issues, random thoughts, whatever is in my head. Along Came George is a blog about losing my mom to cancer last Fall. Yes, so very sadly, Toad's much beloved Grandma is gone, which I will also be talking about here, just from a different perspective. The last one, Tales From the Shed, will be fun - if you have any interest in DIY projects that you might see on tv or in magazines and think "that's really cool but seriously, who does that?", I know someone who does that. I know if you're here for Planet Josh you may have no interest in the other blogs but at least check out the mastheads - each blog has its own, ALL IN THIS ONE SITE. Which is ridiculous, exactly what I wanted and completely awesome thanks to Meredith at DropFoundry and BuenoBaby (for any of you who were around back when I was writing for Momversation, she was writing for them as well, that's how we "met"). Also, please thank her husband Ben, because while she was going insane trying to figure out how to make my design wishes come true, he was busy bringing all of Planet Josh's posts over here.

OK. Now that you've seen the new blog neighborhood, let's talk about Josh. I know it's been forever, but while there have been a number of big changes in our lives over the last year or so, Toad is still pretty much the same little dude.

He is in high school now, though technically he should still be in middle school. It's a long story and I'll fill you in later. Yes, HIGH SCHOOL, where apparently he naps almost daily. I know I would have enjoyed high school a whole lot more if I'd been able to crash on a big bean-bag chair whenever the mood struck...

He still asks for fries 1000 times a day and Blue's Clues is still his whole world. He has, however, changed his shoes of choice from Uggs to (wait for it) ... Crocs. Because of course he did. The Fashion Police can sit-down and shut-up, Planet Josh is where questionable footwear trends are welcomed with open arms....er, feet.

Here's a picture of him from last summer (obviously before the Uggs fell out of favor) at one of his most favorite spots. This was also the last time he saw his grandma :(

July 21, 2012 at Dundarave Park, West Vancouver, BC

See that little block sitting beside him? That is a Peek-a-Block by Fisher-Price. I have mentioned these before in an earlier post about the toys Toad loves. He still loves them. Mostly just to hold in his hands and chew on. Endlessly. It is rare to see him without one or two as he'll even take them to school. 

A few nights ago, he surprised me. You see, Little Man has never been one to follow the crowd, even as a baby/toddler - he never crawled, he bear-walked; he didn't babble, he growled (which was hilarious, by the way); he didn't play with his toys, he either carried them in each hand or would walk around the playroom picking them up and then dropping them over one shoulder as went. Aside from being early signs that Toadie was marching to his own drummer, it also means I never saw him learning/developing in a conventional way. Which is not a problem, or anything I'm unhappy about, it just means that I do on occasion end up surprised when for example, he starts building a block tower. Which he did. And it was fascinating.

It was amazing to watch this process. I do think it was the first time he's ever really tried - at very least it's the first time I've ever seen him try. He was determined, yet unfazed by failure. He seemed amused when they fell, but was also clearly intent on trying again until he had stacked every block he could find. Problem was, his first two were always perfect, but at 3 or 4, he'd put them off-center so that any further stacking was bringing the whole thing down. I could see him thinking when he would put one on top and notice that the stack was wobbling. He'd hang on to the one he was trying to place, and try to use that one to stabilize the tower. That of course would not work and the towers were coming down every time.

I decided that while letting him figure things out for himself is good, and as a parent you do that with your kids often, I also didn't want him to get bored or even upset enough to melt-down or walk away and stop trying - the speed with which Toad can go from being happy to being in a rage is impressive and unnerving (and clearly no fun for him). So I went to him and let him start another stack. When he got to the point where he would put one off-center, I gently took his hand and showed him how to straighten it out. I did this twice, and then left the room to watch from a distance again.

The first couple of times he tried after that, he did it the same way he had been and the tower continued to crash down after just a few blocks. Then he started another one. This time I watched him straighten out his off-center ones the way I'd shown him. His tower went up high and stayed tall, he was so excited. He was laughing, making his "so happy I just want to growl really intensely" noise, and bouncing. Then he leaned over and tried to chew on the very top block. OBVIOUSLY. I mean really, what else are you going to do with it?? Then it all crashed down, Toadie giggled and built it back up again. He was a pro at it by bed-time. He made a few that were about as tall as he is and tried to chew on all of them, laughing the entire time. I so badly wanted a picture, but he's very camera-wary these days and as soon as he senses there might be one nearby, he'll stop whatever he's doing that you want a picture of. I didn't want to take the chance of ruining the fun.

It was awesome to see him enjoying a newly discovered use for his old standbys, as well as fun to see him doing something that for Toad, was quite out of the ordinary - aside from the chewing :)

Josh and the Giant Bee

There are few things in this world that Toad loves as much as Blue's Clues and fries...

Candy.

Water - playing with or being in it.

His beloved soft Tonka cars/trucks.

Being outside in the wind or rain.

 

But there is one thing. One thing that trumps all, yes, even the fries take a back seat to this.

 

Floaty Mylar balloons. 

Their helium-induced gravitational defiance rocks Toadie's world like nothing else.

 

They make him furiously happy. And I mean that literally. His enjoyment of them is so intense it borders on aggressive. Like when you are so excited about your favorite team winning a big game you shove the person sitting next to you out of their seat...

what? I AM NOT THE ONLY ONE WHO DOES THAT. Probably.

Anyway, these balloons are a big deal in Toad's world. They have rescued us from many a torturous shopping trip and are guaranteed to bring a smile to his face no matter what. Most of the time we get them on my initiation but every now and then, he'll ask for one himself.

This is what happened a few days ago, when we were finishing-up what had been a moderately stressful grocery store run. He saw a lot of the "Grad" balloons that were all over the place and asked for one. I told him we'd get one once we'd finished all our shopping. He hung in there after that, so when we'd finished getting the groceries we needed, I told him it was time to get his balloon. I don't usually worry about what kind of balloons we get - birthday, grad, v-day, congrats, etc - because Toad doesn't care. If they're Mylar and they're floating, we're good. But for whatever reason I can't explain because I have no idea, I didn't want to get him one of the Graduation ones. So we went over to the floral section where they have others.

I think we both saw it at the same time.

There, floating high above some potted plants, was a bee. A giant, smiling, floating, bee balloon. As I asked him if he wanted the bee, his eyes were already locked on it and he immediately said "bee!"

And so it was.

 

The down-side of these non-pharmaceutical uppers is that Toadie will usually pop or deflate them within a couple of hours of getting them home, so the joy is short-lived.

 

But the bee was different.

Josh had "conversations" with the bee - clues were discovered and discussed. Planets were named. Songs were sung. And it never left his hands...

 

 

 

 

 

not even at bedtime.

 

 

 

 

 

Hey little man, are you really going to sleep with the Giant Bee Balloon?

 

 

 

 

 

 

 

 

"Don't even think about taking this from me.

Also, of course I am. DUH. "

 

 

 

 

 

 

 

 

 

 

 

Lol, ok, cutie :)

 

(shhhh .... don't tell him I snuck in and took it out of his hand once he fell asleep!)

 

 

 

 

 

 

And it didn't stop there.

 

It was the first thing he grabbed when he got out of bed the next morning and he insisted on bringing it when we took Zach to the orthodontist. In fact, the only way I could get him to leave the big, soft Tonka truck that they had in the waiting area and he had decided was his, was to remind him that the bee balloon was waiting in the car - truck hit the floor, Toadie was on his way. Magic.

 

 

 

 

 

 

 

See? I told you it was in the car...

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

... and I can tell you're smiling even though you're not looking at me :)

 

He didn't even care that we didn't stop for fries on the way home. It was madness I tell you, MADNESS!

 

 

 

 

 

 

Even after we got home, he wouldn't let go.

Not even to eat.

 

But the impetus to have fun soon was too much to ignore and Toadie played hard with his balloon-friend as is his way...

 

 

 

 

and Mr Bee eventually suffered the same fate they all do.

 

Aw :(

 

 

 

 

And Toadie went back to using his iPad, looking at his books, chewing his trucks and blocks, asking for fries and giving me 8 million kisses on my forehead. 'Cause that's how he rolls. 

 

Bye-bye, Bee. Thank you for making Toad so happy with your cheerful, floaty, bee-ness while it lasted.

 

ps. Toad just finished Middle School...

W H A T ?!?

A Girl, a Kidney, and the Living Legacy of a Lost Friend

Sometimes, there is good news in the world...

 

About a year-and-a-half ago I wrote this, http://planetjosh.squarespace.com/journal/2011/2/2/i-dont-know-emily-but-ive-met-her-kidney-and-im-following-it.html, the story of a kidney I met on Twitter and the young woman it was determined to belong to. Go read it, I've never met a nicer nor funnier internal organ.

Emily, despite needing dialysis 3x/week, having to live on severe fluid restriction and waiting patiently while friends and family tried to help but none would match, continued to live her life and got married last June!

But that was just the beginning of her happy ending because yesterday, she posted this video:

http://www.kidneyregistry.org/

Congratulations, Emily and Emily's Kidney, on finally finding each other! This makes me exceedingly happy :)

Living donation is an amazing gift, one that's been close to my heart for some time, even before I met Ms Kidney.

13 years ago while donating blood for a blood drive in honor of a neighbor's young son who'd passed away, I put myself on the National Marrow Registry. I have never come up as a match for anyone, including a friend who was also sadly lost to Leukemia 2 summers ago

But while she was still with us, many friends chose to join the registry - not just to try to help her, but to honor her legacy by potentially helping others. Unfortunately none of us were able to help Bernadette. But one of those friends recently came up as a match for someone else - and just this last week he donated his bone marrow to that person.  Two years later Bernie's legacy lives on, thanks to wonderful people like Tony (one of my former karate instructors), and hopefully others as well.