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

Paws and Effect: The Service Dog Story, Part 1

Ok. This subject is likely going to require multiple posts to cover the whole story so this will be the first of however many it takes.  I'm thinking three, but don't hold me to that. 

When Josh was about 5 years old my mom sent me an article from the Vancouver Sun newspaper about an organization in Canada that was training dogs to work specifically with young, autistic children.  I had been thinking about a dog but had no idea that this was even a possibility until she sent me the article.  It started with the mother of an autistic child who approached this group that were training dogs for people with other types of disabilities.  Her son was a "runner" - in the autism universe, this is the term we use to describe children who take off anywhere and everywhere at any time, without warning, with no regard for their own safety.  Some will even wake up and leave their houses in the middle of the night.  Trying to hang on to a child like this is impossible.  This mother was desperate and was hoping that there would be some way for National Service Dogs http://www.nsd.on.ca/ (this is in Canada, by the way) to help her.  The trainers decided to give it a shot.  They trained a dog that would be a part of a team: adult, child, and dog.  The child would be tethered to the dog with a special lead hooked to the vest of the dog, this being about 3 feet long.  The dog would be handled by the adult.  This ended up working well for this child and he actually developed a bond with the dog that literally changed everything for him and his family.  This led the folks at NSD to think maybe they were on to something here and as the story came out, they started getting more and more calls from parents of autistic children.  They decided to focus solely on training service dogs for autistic children at that point, developed a training program, and started accepting applications. 

I investigated this thoroughly.  Josh has never been a "runner" in the classic sense but these dogs were helpful for so many situations, I knew it was a good idea for Josh.  Once he got too big to sit in the grocery carts, he was loose, and at that time, was NOT interested in holding my hand or being held on to in any way.  Then trying to get him to stay with me would cause a tantrum... which was something I tried to avoid whenever possible.  I figured with the freedom for him to move around without being "held" but still safe and not loose because he would be tethered to the dog, it seemed like a fantastic idea and one that just might work.  There was also the hope that he might develop a bond with the dog and be able to take it to school, maybe it would help keep him more calm and focused.   NSD is a Canadian organization though, and we are in the states.  They were taking applications from families outside Canada, but Canadians were given priority on their wait list.  So I did a lot of research to see if there was anything similar in the U.S.  At the time, there was not.  Service dog organizations trained dogs for those who were blind, in wheel-chairs, had epilepsy or were deaf, but no one was training dogs to work with autistic children - that being the other issue, no one was training dogs for anyone younger than 16 period, regardless of their disability.  Not that I could find anyway and believe me, I looked long and hard. 

We decided to apply to NSD, even if it meant a long wait list, feeling it would be worth it in the end.  We did, and were accepted, but the wait was going to be about 2 years, possibly longer. 

I started getting impatient though, I really wanted this for Josh.  So after about a year on the NSD wait list, I started looking around again for something in the states or even anything similar, didn't matter where it was.  That's when I found 4Paws http://www.4pawsforability.org/  who are located in Ohio.  I'm not sure why I didn't find them initially but I don't think they had been working with autistic children at the time I started checking in to all this.  They were when I found them though, and not just for autistic children, they trained dogs for children and adults with many different disabilities.  For the autistic children, the dogs were not only trained as service dogs, but also as tracking dogs, if you felt that was a skill important for the dog to have (ie. in case your child ever wandered off or was lost somehow).  I got in touch with them and ended up applying to see where it would put us as far as wait time for a dog.  NSD bred their own dogs to use in their program, which was a big part of the reason for the long wait list.  4 Paws used all kinds of dogs, including rescued dogs, as long as they met temperament and health standards required for training.  This made the wait list much shorter for them.  I contacted NSD to find out how close we were and was told it would still be another year or so.  4 Paws said we would likely be able to get our dog within the year.  So I had NSD take us off their wait list and set us up with 4 Paws. 

The process to get the service dog required a written application from us stating why we wanted a dog for Josh, how we thought it could help him and our family.  We needed letters of reference and recommendation from teachers, friends and doctors.  We had to submit a video of Josh and the family.  Mostly of Josh though, so they could get an idea of what he was like to better match him with a dog.  I made sure to get a tantrum on the video, so they could see what he was like when upset - better to know ahead of time to make sure they chose a dog that could handle that.  We did everything we were supposed to including submit the required donation.  Both NSD and 4 Paws asked for a certain amount as a donation to the organization, they obviously need to function somehow.  You can donate the money yourself if you have the means, or you can fundraise.  The difference was this: NSD asked for it, but, if you were unable to raise the full amount by the time you were up on the list for getting a dog, you would still get your dog.  They guaranteed a dog to anyone that they accepted on their list.  With 4 Paws, you are not eligible for a dog UNTIL you meet the required donation amount.  Neither is right or wrong, just different organizations functioning the way they feel is best for them and what they do.  What that did mean though, was that with 4 Paws, you had power over when you could get your dog - fulfilling the requirement sooner put you at the top of the list.  With NSD, your place on the list is set when you are accepted and you cannot do anything to change that.  I don't want to get in to the ethics of all this, I have conflicted emotions about it to this day.  Both organizations do wonderful things for our kids. 

Our requirements fulfilled, we were notified that we had a spot in a training class that was to take place in March of 2006.  I was so excited I can't begin to tell you.  The hardest part was waiting to meet Joshua's dog.  They send you an e-mail with a picture and note from your child's dog anywhere from 1-2 weeks prior to your training class.  This was something I had been working on for a couple of years by this point and we were so close... I had all sorts of visions in my head of how it be, how Josh would develop this amazing bond with his dog... how much it would help.  March arrived, and so did our e-mail.  Her name was Ellie.  A beautiful golden lab and she was anxiously awaiting our arrival so she could meet her new friend Josh. 

... And this is where I will leave the saga of the service dog for now.  I know, I know, don't hate me, I just can't fit it all in to one post and this is a good spot to break it  (of course that will be more obvious with the next post, but you just have to trust me :P ).