THE STORY OF OUR AUTISM SERVICE DOG PAULA….

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September 23, 2011

Paula’s “Graduation” Pic 🙂

(originally written & published on September 23, 2011)

People are always asking me tons of questions about our autism service dog, so I figured I’d write a post all about it. As a bit of background, my son Kyle is 8 years old. He has severe / classic / non-verbal autism and he is our only child.

So, my brother in law and my sister were sending me links for autism service dogs for years! Finally in late 2008 we filled out a packet of information from the organization Guiding Eyes For The Blind (http://www.guidingeyes.org/) They have been placing service dogs with the blind since 1956 and beginning in 2006 have started placing autism service dogs with families through their “Heeling Autism” program (https://www.guidingeyes.org/prospective-students/children-with-autism/)

Get it, HEELing Autism, as in getting a dog to Heel…

Anyway, in early 2009 we had our interview with Guiding Eyes/Heeling Autism. An amazing trainer named Caroline came to our house with a beautiful black lab to meet us, make sure we weren’t kooks and seemed capable of handling the care of a dog, but more importantly she came to meet Kyle. There was no miracle that day. Kyle did notice the dog, and grabbed her tail as he ran by, which was all the trainer wanted to see. We then took a leisurely stroll around the block with Kyle tethered and attached to this dog… and wouldn’t you know it, Kyle just naturally grabbed on to her handle like he knew what he was supposed to do. We were flabbergasted and so was Caroline. Now at this point they’d placed maybe a dozen or so autism service dogs and she said she never saw a kid just naturally grab the handle.

A week later we got an acceptance letter. We were in! We had been approved for a service dog. Now the hard part… THE WAIT! 12 months or more. They have to pair the perfect dog with your kid and that takes time….

While we are waiting, let me take a step back and tell you more about Guiding Eyes and the process that they work with. This may be very different from other autism service dog ORGANIZATIONS. Now this is all in layman’s terms. If you want the official story peruse the Guiding Eyes site, specifically here (https://www.guidingeyes.org/about-us/journey-of-a-guiding-eyes-dog/ )

Anyway, the Guiding Eyes dogs are bred. They pick the perfect male stud who’s lineage has the right temperament to make a good service dog and pair him with a bunch of perfect females. They have a HUGE kennel at their facility in Yorktown Heights, NY. Anyway at some point after a dog is born, it goes to live with a puppy raiser. This is a person or family who has volunteered to raise a dog as a puppy, give it basic obedience training, teach it not to pee or poop in the house, etc. These people are AMAZING! Why? Because they do all the hard work. They train these beautiful pups for 12-16 months and then they give them up!

They the pups go back to Guiding Eyes where a career path will be chosen. Some dogs it’s obvious that they’ll make good blind guide dogs, other dogs have the right temperament for police work, other dogs just don’t seem to have it at all (and are placed with a loving family), AND some have the perfect temperament to be an Autism Service Dog.

The way it was explained to me by the Guiding Eyes folks is that many of the Autism Dogs start out on a guide dog for the blind path. , However, blind guide dogs need to be kinda aggressive, need to make their own decisions (to cross or not to cross, etc). When they find a dog that is more passive, that waits for the handler to give direction, they redirect these dogs into autism service dog training. The reason being is that with an autism service dog, it’s the parents giving the commands. (Other autism dog schools may do things differently, but this is the way it work with the Guiding Eyes/Heeling Autism dogs).

ANYWAY…. in May of 2010, we finally got word that we’ll have our week long training with our service dog Paula at the end of May. This is training for one parent (whoever will be the alpha male and be with the dog most of the time). The one parent stays 5 nights at the Guiding Eyes facility. So the wife had a week’s vacation! I took the week off from work and spent as much time up there as possible so I could get as much of the training & experience as possible. Our family was amazing, picking up Kyle after school each day and hanging with him till I got home at around 7 each nite.

So very quickly about the training. We met our GORGEOUS new dog (daughter 🙂 Paula, bonded with her and learned all the basics. “Wait, sit, down, forward, etc, etc, etc.” We practiced this EVERYWHERE that week…in malls, in restaurants, on busy city streets, etc. And very often one of the trainers would play the part of an asd kid having a tantrum and we’d learn what to do and how Paula can help in that situation. (These dogs thru all their training from when they were born were prepared for anything! Screaming kids, loud noises, screaming parents J, etc.)

And I gotta take a moment to say that the 3 trainers we worked with were AMAZING! They somehow knew more about autism and our daily struggles than many people / even experts in our autism world… And they’ve only been doing this for 4-5 years. Before that they were blind guide dog trainers. Anyway… AMAZING women.

Anyway, after a 5 day work week we brought Paula home to meet Kyle. Nothing miraculous, but let’s just say Kyle didn’t ignore her and he noticed and seemed to appreciate her presence which in our world is a BIG thing.

So let’s get in to the nitty-gritty of what Paula helps Kyle and us with. First off, you should know that we have the same rights as a blind person and are legally allowed to bring Paula with us EVERYWHERE (movies, restaurants, malls, supermarkets, playground, airplanes, etc).

Now Paula’s main job is to walk with Kyle. She wears a special vest. When Paula is wearing the vest, she is a working dog and shouldn’t be petted by strangers. When the vest is off, she’s just a regular dog. Anyway, she wears a vest and Kyle wears a special “belt” around his waist and he is tethered to Paula by a 2-4 foot strap. (When they are out in public, he holds the handle on her best and they walk together. Before Paula, we had to hold Kyle’s hand CONSTANTLY. Now one of us holds Paula’s leash, Kyle hold her handle and we walk. It gives him a lot more independence. If Kyle goes to bolt, we tell Paula “WAIT” she freezes and locks up and Kyle can’t go anywhere. That is her main job. She also helps him navigate stairs better. Before Paula, he’d fool around while walking and stop every step or so. When attached to Paula he walks more typically, with more of a purpose.

In restaurants, we usually ask for a booth. We put Kyle on the inside, Paula lies on the floor, but is attached to Kyle and she keeps him closer to the table and hopefully more focused on eating.

The other big thing that Paula helps us with is meltdowns, tantrums, add, adhd. When Kyle is having a meltdown or is extremely stimmy and can’t sit still (ants in the pants), we’ll attach them, put Paula in a down position, put on one of Kyle favorite tv shows and make them sit together for a half hour or so. When it works it is MAGICAL!

While on vacation this summer, we would attach them and Kyle would sit still and play with the sand for 30+ minutes!! The sitting still part is HUGE in our world

So those are the main ways we use Paula to help us with Kyle. It may not sound like much, but she is IMMENSELY helpful. And most of the time, it’s not like we are forcing Kyle to stay still by attaching him to Paula. He accepted it right away and sometimes he needs to be grounded for a half hour or so.

Do we bring her everywhere? In the beginning, we kinda did. Now we just bring her into situations where we know that she will be helpful (restaurants, movies, relatives houses, etc).

Does she go with Kyle to school every day? No… And she kinda can’t. Kyle is non-verbal. Paula accepts commands from us (mom & dad) and we can’t be in school all day. So technically she can’t be with him in school all day. She does go with the wife sometimes to help drop Kyle off and pick him up.

So, there will be weeks that go by that we kinda don’t use Paula as a guide dog at all. But just with asd kids I think she might have a regression (“use it or lose it”) if we don’t utilize her skills often enough. So we try to use her at least once a week out in public.

Is it perfect? No, not at all. She is still a dog. She still wants to eat ALL THE TIME and wants to play with socks all the time. When her vest is on she is much better, but even when she is supposed to be working it’s not always perfect. It’s another situation in our lives where if Kyle was slightly higher functioning, slightly more aware, then we’d get a ton more out of the whole service dog experience.

But he’s not more self-aware and he walks on and steps on the dog and when he does that she reacts and stops doing her job…which is frustrating for me & the wife, but totally understandable. I mean they train and prepare these dogs for tons of different scenarios and situations but there ain’t no training for a 55 pound oblivious kid stepping on your paw…

And there’s probably more things that Paula could help us with. The trainers gave us a quick intro into “clicker training” and we could teach Paula to stop some of Kyle’s stims among other things, but clicker training takes a lot of time and work and is kinda like aba for dogs. We barely have the time or energy to work with Kyle, so of course Paula’s clicker training takes a back seat.

Anyway, that the gist of what she does. It is not miraculous. It is not a cure. It is not perfect. But she is IMMENSELY helpful. My wife and I were NOT dog people growing up. And Paula has been a WONDERFUL addition to our family. She is our daughter.

Oh, and I don’t know if I mentioned this earlier but she was completely FREE!! Guiding Eyes gives these dogs away for FREE! Even the vet care is paid for if we bring her back to the Guiding Eyes facility in Yorktown Heights. Would I have paid $10-13K for a dog like this (like other places want you to pay?)…probably, but I’d want more out of it. I’ve heard of other dogs who are like blood hounds and can track missing kids… or who come already trained to stop certain stims (this is my grass is always greener syndrome coming out again). If I paid over $10K I’d probably want those skills on top of what Paula brings.

But what Paula brings is enough. What Paula brings is plenty. What Paula brings is beautiful, magical. When I bring Kyle upstairs to go to sleep at night, Paula can’t wait to get up and jump on his bed and sleep with him. (yes she sleeps with him J). And you can see that she yearns for his attention. Getting Paula is the best decision we’ve ever made for Kyle…

That’s all I got for now. Please feel free to ask questions if I didn’t cover everything here. I may add things to this note if I think of anything else.

Thanks for reading!

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Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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