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