Meet The New Boss, Same as The Old Boss

So, turns out I was actually serious about getting this going again. :D

And whether you’re new here or just want to get caught up, you’ll need to know a bit about Josh, or, He For Whom the Planet is Named. Otherwise referred to as Toad or Toadie.

For anyone looking for extra credit or if you’ve run out of good stuff to watch on Netflix, reading the Archives from when I started this business back in 2010 will provide you with the best background. But for those without that much time on their hands, in a nutshell (full disclosure: it’s a pretty big nut):

My name is Sarah and I started writing this blog for those interested in what life is like raising an autistic child. Not as an example for everyone (yeah, no, do not look to me as any kind of example) more as a peek at the realities of day-to-day life that might inspire some understanding and compassion with as much humor as possible. This is our reality, this is not everyone’s reality. All people with autism are different, all families are different, and all circumstances.

Josh, the younger of my two sons is severely affected by autism and developmentally delayed. And when I say “severely,” I mean at almost 21 years of age he cannot care for himself, communicate more than very basic needs, and deals with a significant amount of anxiety and mood dysregulation which manifests through various behaviors—some of which are harmful to himself as well as others. He is on a number of medications, needs almost constant supervision, has a very limited/unusual diet, and is obsessed with certain things.

Toad’s story is a bit atypical, in that he had motor/developmental issues that were apparent when he was still a baby. He wasn’t rolling over when he should have, and when he finally did, he would only roll one direction; he was a late walker and late talker—and only had a couple of truly discernible words; he growled like a baby tiger; bear-walked instead of crawled … it was initially thought that he’d had a stroke in utero.

He had a full evaluation with a neurodevelopmental specialist which included a brain MRI, loads of tests and blood work including genetics and a skin biopsy (for a mitochondrial defect). At this point he was 17 months old, and fairly typically social.

His MRI did not show a stroke, or the remnants of one. None of the other tests showed anything out of the ordinary either.

Two months later the “socialness” disappeared. He stopped interacting with others, started screaming when anyone other than me even looked at him, lost all interest in his brother—who, up until that point, he had always wanted to be around—and began “flapping” his hands and jumping when he was looking at certain books. He started carrying toys around—always had one in his hand—or just throwing them over his shoulder instead of playing with them. His couple of words went away and, he stopped waving “bye-bye.”

I had been a nurse/nurse practitioner and his dad was a pediatrician, and we both knew what were seeing at that point. He started early intervention, which due to his age involved various physical/occupational/speech therapists coming to our house, and ultimately, at the age of three, he was officially diagnosed with autism.

I should probably note that this was the late 90s - early 00s.

Otherwise known as the last time Train was any good and we still had VCRs and VHS tapes.

And this, was little Toadie:

One of my all-time favorite pics of him :)

One of my all-time favorite pics of him :)

This would be a good time to hit the Archives. Here, I’ll even throw you a page to get you started .

Really, the more things change, the more they stay the same. Which is something that hasn’t always made sense to me, but, it actually works as far as current Toad vs 2010 Toad goes.

  • There is no more french fries counter. This is not because Toad stopped eating or asking for them, he does still, but because he perseverates on a number of different things these days, not just fries. We make a weekly trip to a local drive-thru for them, and the folks there know us so well they start his order as soon as they see my car coming.

  • His footwear of choice went from Uggs to Crocs. Because of course it did.

  • He’s still all about Blue’s Clues. It’s all on the iPad these days, and, in weird ways on YouTube. We’ll talk about that later.

  • He is mostly independent with toileting now—he was 18 when it finally happened. I honestly didn’t think it ever would. Still needs help with cleaning up, but, this is a huge, huge leap away from changing diapers.

  • Aside from nursery rhymes, his musical tastes these days lean toward classic 90s R&B/Hip Hop. And the Home Depot “Search for a Star” music video winners. We’ll also talk about this later.

  • Still likes all the same toys. Weird cat piano thing? Yep. Peek-a-blocks? Yep. Chuck and Friends soft trucks and cars? Uh-huh. Any Blue’s Clues book or toy? YAS. Most of the things he likes can only be obtained via eBay or Amazon Marketplace sellers now. Which, thank goodness, but also $$$$$$.

  • He doesn’t try to disrobe in public any more, but still does at home on occasion.

  • Still loves to swing.

As I mentioned, he is nearly of drinking and gambling age now, and just finished with school.

And he still loves water/walking on the beach.

And he still loves water/walking on the beach.

One of the biggest reasons I stopped writing the blog when I did was that I got a job writing for a newspaper. Which is what I have been doing for the past six years while he was still in school. But care for Toad is expensive, and the bottom line is we can’t afford for me to keep working outside the home now that he’s out of school for infinity. At the moment we live on an island, which while very close to a major urban area, doesn’t have enough of a population to support day programs for adults like Toadie, so, I quit my job and am back to supporting life on Planet Josh full time.

Transitions for all of us, hooray! Join me while we work through it all, won’t you?

Did I mention the Elder Spawn is graduating from his post-secondary endeavor in a week?

Anyone? Credit: SNL GIPHY

Anyone? Credit: SNL GIPHY

What is "normal", anyway?

I wish I'd written this, but I don't think I would have done it justice - this is a fantastic post on the Thinking Person's Guide To Autism that I think everyone should read:

http://thinkingautismguide.blogspot.com/2010/08/arbitrary-normality.html

 

I have felt this way for a long time, so nice to see someone else put it in to words.

ps. I have a post up on the TPGA as well, but it was about service dogs and since I already tortured you with 4 posts on that here, didn't think you needed me throwing more of that around! Feel free to check it out though, if you are interested. :)  I have the Guide on my links page, but you can also just navigate from the post above.

So This is New

I guess since the whole sleep-weirdness thing didn't pan out, Josh is taking a new tack in his efforts to keep me on my toes.

Earlier today, a Walgreen's Specialty Pharmacy rep came to the house to meet with Zach and I - Zach is starting on Growth Hormone shots this week and she needed to come and orient us on how to give it, store it, prime the injector, dial up the dose, etc etc.  Josh was happily doing his thing up in his room, so Zach and I were downstairs in the dining room with the rep.  I had already warned her that Josh might show up without pants and not to be alarmed.

Apparently I should also have warned her about his random, sudden, ear-piercing primal screams when he's only about 3 feet away...

Josh came downstairs while we were talking, took one look at us sitting and talking at the table, and promptly went in to upset-whiny mode.  He started asking me for everything.  I excused myself for a minute to go get what I thought he wanted, turned out it was one of those, "nothing you get me or offer me even if I've asked for it is going to make me happy, in fact, it's just going to make me more upset" moods.  Those are fun.  So he was getting louder and more disruptive, I went back to continue with the rep.  Josh followed me.  He would not leave me alone.  So we tried to continue our orientation with Josh grabbing at me and crying in that high-pitched knife to the brain way that he has.  I tried tickling him to break the funk, often this works well.  He'd start laughing for a few seconds but he was determined to continue the disruption, undeterred by my distraction he'd let loose with the primal scream.  It will make you jump even if you're used to it, and the poor rep must have come off her chair a good 6 inches.  I had to give Zach his first injection with Josh harassing me the entire time. 

About 5 minutes after the rep had gone, Josh was perfectly fine.  Happy as a clam, going about his business like nothing had happened.  Whaaaaaaa?  OK.  I am used to his tantrums being somewhat random and occasionally inconvenient but this was... purposeful.  He'd come downstairs, saw us talking, and decided for whatever reason that this was unacceptable, and did his best to interfere.  The only other times I've ever seen him behave this way ON PURPOSE, with the intent to change something that was going on, has been when we've tried watching a movie or tv show on the family room tv at a time when he was not interested relinquishing it for our use.  We've had people to the house before, it's not like he's never seen someone he doesn't know come in.  It was a surprise and honestly, really annoying.  I love Josh, and I don't like complaining about him or making it seem like he's terrible to be around because he's not, for the most part.  But he gets so much of my time and attention as it is, and this is a really big deal for Zach and I need Zach to know that I am 100% there for him on this.  Usually I take Josh's tantrums in stride but I let my annoyance show while the rep was here.  That's right, I'm talking about you, Mr Toad. No, I don't have any more Pop Tarts...

So now I feel guilty.  Guilty because I couldn't give Zach and the discussion 100% of my focus and guilty because I lost my patience with Josh, who, can't exactly help how he is.  So, it was a fairly suck-tastic parenting episode.  Both kids getting the short end of the stick on this one.  WHO TOOK THE LONG ONE? Damnit.

 

In other news, Josh helped himself to about 7 Pop Tarts after dinner.  Hey, I'm all for his being able to get things for himself, but, this may have been a little bit of an abuse of that freedom.  Little. Bit.  Someone should figure out how to fill them with meat and veggies yet still have them look and taste the same...

Zach's Turn!

Today, big brother takes over writing duty.  Zach wrote an essay for Awe In Autism (wonderful site, link is on my links page!) and it was posted today.  It's about being Josh's big brother and some of the ideas he has for things he'd like to do for Josh in the future.  I'm extremely proud of him :)

http://www.aweinautism.org/index.php/gallery/essays/127-essay-zachary-oriel

David Caruso's Got Nothing on Me

If you've been reading the blog for a bit you're aware that there are a lot of mysteries to solve when it comes to Josh and I do have a tendency to reference CSI.  That's probably because being Josh's mom, or the parent of any autistic child for that matter, requires more than your average amount of detective work. 

For the last couple of weeks, I noticed that Josh was taking off his right shoe a lot.  He would come out of school with it half off and just be walking on the heel of it or would be wiggling his foot around like there was something bothering him when I would put it on.  He does have some small plantar warts on his heel, but he has them on the right one as well and through some careful, after-he's-asleep ninja applications of Compound W,  they are mostly gone.  So I didn't think it was that.  I kept checking his socks to make sure I hadn't missed any objects or lint collections that he sometimes likes to put in there (see my post "Movers and Shakers" for more on that if you haven't already).  I decided he was just working his sock between his toes for more sensory input and tried to not worry about it.

Yesterday evening, when I was cleaning up after the boys were asleep, I noticed the shoe in the hall so I picked it up to put it by the door.  Something was missing.  Then I saw an insole a little ways away.  I picked it up and went to put it back in the shoe, when I noticed that it wasn't the right insole.  It was from his last pair of shoes, for the other foot.  Hmmm.  Well, so where's the one that actually goes with this shoe???  The search began.  I thought it was odd, because the one that wasn't for that shoe was so close to it and I could not find the correct one.  Then I remembered putting the old pair away so I went to check and sure enough, found the insoles as well right next to them... except one of them was actually the one that was supposed to be in the current right shoe.  *insert A-HA moment here* Realizing that he had had the wrong insole in the right shoe for the last couple weeks, I put the correct one in.  Poor kid!  He plays with all of our shoes (also see "If the Shoe Fits" for this!) and loves to take out the insoles and I have to play match-up at the end of the day.  Somewhere along the way I messed up and mixed one up, though it could very well have been Josh himself as he will put them in sometimes too.  It's so hard when he can't just TELL me what's wrong.

Feeling somewhat triumphant with one more mystery solved, I put on his shoes for school this morning thinking he would be so happy that it wouldn't feel so weird anymore.  He stood up and as he was walking away, I noticed that he was now moving his left foot oddly in the shoe...

My name is Sarah. Seattle. JSI. 

*puts sunglasses on*