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

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.

Welcome!

     Hello and welcome to the blog :)  My name is Sarah, and I am the mother of two boys, one of whom is severely autistic. For a long time now I have been thinking of writing about this. I initially had something more substantial in mind, but my very intelligent big sister suggested I start with a blog and I decided that was a great idea.

     Autism has certainly garnered a great deal of attention over the last 10 years and rightly so. However, I find that most of that attention is focused on one of two things. We see the "success" stories or we see the arguments over what may or may not have caused it. Don't get me wrong, I think it's wonderful to draw attention to the positives or when people have been able to do things that have helped their children in significant ways. I also do not have a problem with people expressing their opinions or fighting for their beliefs. However, I do feel like what has been missing is the reality of this for many of us. As a parent, I would often feel guilty when I would see news stories or read books about people who "cured" their children of autism, or recovered them significantly - because that hasn't happened with Josh. We tried many, many things and he has been receiving interventions or therapy of varying intensity and focus since he was 19 months old. I believe that for many of us, the big success stories aren't the norm and we shouldn't feel alone or guilty because of that. So part of this is to share with you my family's reality of life with an autistic child. I'm hoping that this will be of interest to many people, not just those in my situation. Chances are if you haven't yet, you likely will someday, run into someone whose life has been affected by autism in some way.

     What this is: with as much humor as possible (hey, laughter is GOOD!) it's a look at the day to day strangeness that is Planet Josh. What this is not: a place for political debate or to argue over things like cause or treatment modalities. We all have our own opinions and our children are all different and there are places where you can argue to your heart's content about those things if it's important to you. This is not one of those places :)  Here is where you can come to learn, laugh, maybe cry, relate, share, or spend a few minutes because you couldn't find anything better to read. Whether you are a parent, relative, teacher, health care professional, friend or just interested in how my life might be different from yours, please, read on.

     For a while, the posts will be focused on getting to know Josh. You can't really understand this planet of his until that happens. Since this is my first foray into the Blog-o-sphere, I imagine the site will evolve over time. So be patient, stick with me if you can, and I will do my best to make it work.

 

ps. the "counters" on the sidebar will make more sense after you read my first couple of entries.

 

Sarah