J-Bear and Me

learning to navigate the world, j-bear style

Tag: APAW

Our Story: Life with an Autism Service Dog

It has been all over Facebook, Twitter and all kinds of social media lately: The picture of a sweet little boy greeting a golden retriever and laying with him like they’d known each other forever while his mother looks on in tears. It’s the moment a little boy met his autism service dog. It’s a great moment, a moment worked for for a long time and hoped for and wished for. It is, I would hope, the start of many more moments like that.

Every time I see it though, I flinch. The reason I flinch is likely not what you would expect, either. This was one moment in time. It is a moment in time that is beautiful for them, yet it is not representative of the majority of experiences. Let me tell you our story, and let me share with you what the journey can be like.

My son was diagnosed with autism in August of 2012. He was just past 2 years old, gifted with a charming smile and sweet looks but lacking words or interest in communicating. He had his way of relating to the world and, heartbreakingly at the time, we had no idea how to bridge the gap between his mode of relating and our own. He was involved with the local Early Intervention program, had multiple therapies going pretty much immediately after diagnosis thanks to them and we threw the doors open wide in terms of finding what might work to open his world up further. Whatever it would take for him to be able to find himself, we were down for doing it even if it meant using flashlights to speak Morse Code.

It was in early 2013 that I happened to start looking up service dogs. I’d seen something in passing about service dogs working with children but knew literally nothing about them. I searched, I read, I considered… then I did that all again and again. We settled on a program, did the application and got accepted. I began fundraising for his dog in April of 2013. We finished that fall and were scheduled to meet his dog in October of 2014.

Photo courtesy of Stephen Herron

Photo courtesy of Stephen Herron

The moment the world saw in the picture of the boy and his new dog? We had that. Right down to the golden retriever. Right down to the boy turning beaming and comfortable. I didn’t cry, no, but I was blown away. We thought we had a Hallmark moment, the one everyone wants.

This is life. Life does not work that way, sadly, no matter how badly we want it.

Brooklyn, the beautiful girl to whom my son was matched, is a radiantly beautiful cream colored Golden Retriever with the sweetest, most tender gaze. She has a heart as big as the sea. She wanted to please so, so much. She doted on her boy, she attended well to me when I handled her, she knew her tasks. It was hard work though, especially when it became clear Brooklyn had struggles.

Service dogs are not robots. They’re dogs. They have needs that require diligent looking after. You also engage in constant reinforcement and training to make sure needed skills stay sharp at all times since you do truly come to rely on them. This was amplified with Brooklyn due to anxieties and health issues. We did all we could, supporting her as much as we support our boy. We reached out to the people who trained her for help. We trusted them to support us, given they claimed they would support their clients through anything.

It turned into a nightmare. My son’s dog was wrenched from us and sent to another family while we withstood being accused of the worst things. My son’s stability – something important to any child and even more so for an autistic one – was destroyed as was his trust. This dog had, despite her struggles, opened his world up. She’d given him language he’d previously not had, allowing him to start speaking more confidently at 4.5 years of age. She allowed him the peace of mind to sit through an eye appointment where we learned he was significantly far sighted. His best friend, his helper, his support… gone.

It is an understatement to say we were devastated and wounded. No, this is not a typical story of what a family seeking these dogs goes through, however… Neither is the picture going viral right now. Thankfully, there’s a lot more to our story.

November 2015 saw us reeling from the betrayal of Brooklyn’s placing agency. We could, foolishly, have waited and let them try again but it was clear they had no interest in doing anything in my son’s best interest. I looked local now, drawing on all the knowledge gleaned over the past two years of being engaged in this process. I knew what he needed, I knew how dire our situation was with him and I knew we could not risk having another golden since he immediately thought of Brooklyn and grew despondent when the dog did not act just like she did. What did I find? Poodles.

American Poodles at Work (APAW) is a service dog organization placing poodles. They are located in Massachusetts about an hour from our home. I reached out to them so certain we’d be turned away given our first experience. The answer I received was warm and welcoming. We were invited, my son and I, to come meet some of their dogs and interview with them to see if we would be a good fit for their program.

j and blossom in the backseat of the car, j in his carseat and blossom sniffing his hand

Blossom’s First Day Home

This is where I did actually cry. We met several dogs that day: Charlie, the elder statespoodle of the organization who has well-earned a blissful retirement after being their demo dog for years; Eager, one of their then most recent litter of puppies; Twinkle, a feisty mini who had a lot to say; and Blossom, lovebug mother to Eager and devoted deliverer of smiles. Blossom would not give up on engaging me or my son. She kept bringing us her toy and waiting for us to play with her. I didn’t know it then, but that’s her magic. She sees a need, she answers a need.

We were accepted to the program. I was relieved. My son would have a helper, it would just be a long while until they might arrive we thought. It takes upwards of 2 years to train a service dog from birth to puppy, and unless an unmatched dog already in training was a perfect fit… we’d be waiting on that.

March 6, 2016. Not long before this, I had joked with the program director of APAW that we needed a Blossom. Blossom, being a breeding mother, requires a home that can live without her for the time she is required to be at the agency to whelp and raise litters. She had no placement at that time. I had a little boy who was losing himself more and more every day. He was without his sparkle. He was combative at school and at home. He was hurting and so was I, since I could not heal his pain.

Blossom came home on short visit that day. That fateful, amazing day. She cuddled him immediately and played with us all. She found out she loved to be on the couch, loved to help my son go to bed and just plain loved being the focus of people’s attention in our home. Within a couple of weeks, she was in our home full-time. Blossom is considered “in training” not because she has anything left to learn – her training is impeccable – but because I remain in training and we’re constantly working on our bond and working relationship. It’s a great relationship we’ve built, but like all things involving living creatures, it constantly evolves and adapts. We will hopefully graduate APAW’s team training by the end of this year or early next year, should schedules allow.

But why did I write all this? Didn’t we have those picture perfect moments?

Well, we did. But that’s not our story. Those moments are wonderful, but that’s not what this dog means to our family. There was no instant “this is perfection” moment with either dog. The moment I realized Blossom was my son’s perfect long-term match was not seen until well after it happened. You see, my son was hospitalized in May of 2016. He had such violent outbursts and was putting himself and others in danger with them. Everything that had occurred had spiraled painfully to this point. The outburst that landed him in the hospital was particularly explosive and frankly, even I was scared by it. Blossom was present. I thought for sure this spelled doom for them as a pair since she was still relatively new to us. I brought her back to APAW just until I could get my son safely settled and able to be around her again. A week later, she was back.

little boy as a red angry bird, salt and pepper poodle as a pink angry bird

J and Blossom, Halloween 2016

She walked up to him like nothing had ever happened. Whole hearted, open-hearted love radiated from her along with the sheer joy of seeing her small, silly friend. He registered total shock at seeing her, too. “Blossom come back”, he said with awe to literally every single person we came across. He thought dogs left and never returned.

Through his worst she did not waver. She only loved and forgave and returned. She accepted, adapted and continued.

Every day I put in time training, grooming and working with Blossom. There are no days off. If she goes to school, looks like I am going back to elementary as well. This is the deal I signed up for the moment I signed a contract to fundraise back in 2013. This is the investment I am willing and able to make in my son’s well being, knowing this is a tool that works well for him. There are vet bills, grooming bills, food bills, toy and gear bills… Every last penny, every last hour and every last ounce of frustration or exhaustion is worth it. I hear him speak in full sentences now. I hear him tell me stories of his day. It’s his own unique manner of speaking, to be sure, but he’s telling me so much. He has rebounded and surged so far forward from where he was last year at this time that it blows me away.

If you are considering a service dog for your child, I highly recommend reaching out to Canines for Disabled Kids. It’s a great place to get feedback on programs and what this all entails. Try to get as many independent views of agencies as possible. Find what works for your family and understand that those pictures viral stories portray are not every day life. They are snapshots that you hope persist for those in them, but there’s so, so, so much more behind the scenes – and so many other pairs that do not look anything like that on day 1. I am always happy to answer questions and help.

This and That

I am really good at these posts that have a lot of random bits but not enough of each bit for a real meaty entry. Buckle up and hang on for the ride!

——

J has been fighting within himself for a couple of weeks now.  It is hard for me to explain what is going on. People in general, no matter how they are wired, can often encounter this rift between what they are feeling and their ability to express said feeling. It seems right now that for J, that rift is more of a large, deep and tumultuous gulf. It is understandably upsetting and frustrating to feel things that you want to express and let out but you do not know how to do so. This often leads to outbursts, to acting out, to just him not being himself.

Frankly I cannot blame him. I’d be equally inconsolable if I felt lost in my own skin. I just don’t know how to reach him in these moments.

I sit, patiently waiting. I set boundaries and make my expectations as clear as I can. I get frustrated, too. I get upset. I’ve broken down and cried once with him in my arms. It’s not pretty, it’s not perfect, it’s not fun.

A lot seems to circle back to grief. Loss is becoming real to him. J’s way is to slowly come to a full realization of an abstract, difficult concept. He’s always observing, thinking and putting pieces together but those abstract emotional things are plain hard for a concrete, linear thinker. He’s realizing that there can be massive upheaval. He is realizing that his beloved girl was forever taken from him. He cries for her regularly and grows possessive of his precious stuffies.

No matter how long you saw this coming it still shocks the system and weighs down the heart.

We have light now, though. We will get through this.

——–

Who knew light could arrive on four prancing feet and covered in the softest, curliest fur?

J and I volunteered at APAW last week and for the first time in months, we both were light and free. J was so proud to have purpose. I hold back tears typing this because I had not seen that centered boy since June. He listened well to Jillian, APAW’s caring leader, and greeted the volunteers and their dogs amiably as well as some clients. He beamed over kisses doled out by sweet Empathy, a poodle in training, and chatted about the different dogs the whole drive home.

The class made it easy to realize that no matter how long our wait for his perfect partner is, it will be worth it. We are with people who care for him and his best interests now. What his needs are matter first and foremost when it comes to making a great match for him. There can be no deadline set for this. An arbitrary date will not produce perfection, it will merely limit prospects and possibilities. Would we rather a partner sooner over later? Of course we would. I would be lying to say bringing home a puppy tomorrow wouldn’t put me over the moon… But I am realistic. We engaged APAW because they make it their business to be subject matter experts in what they do. They have welcomed us into their fold and let us help in any way we are able, so the love we have ached over carrying since Brookie was snatched away will not go to naught. It will be shared with all these lovely poodles we meet and we can happily watch them on their journeys.

Do I wonder sometimes if a pup I meet will be J’s one day? I’d be lying to say I didn’t, but it is easier to immediately think “wow, they are sure going to make someone so happy”… Because they are, no matter what their role. Someday, it’ll be J’s turn and we’ll be okay until that day comes.

Puppy kisses help the time pass a little faster, though. I cannot complain about that!

 

—–

Those of you who have experienced life with IEPs for your children or as an educator know that every 3 years, re-evaluation must occur. J is in the midst of that right now and let me tell you,  I am nervous. It came as a great relief to learn that his beloved preschool teacher is doing much of the evaluating for him, so he is agreeable and trusts her. I know how much J has grown and how much he’s gained. He is so smart and quick, it’s just always nerve-wracking to see what people put down on paper to attempt and quantify your child. It’s not hard to see where his weaknesses are but here’s hoping that his strengths are seen and celebrated, too.

What Happens Now

The changing of agencies brings with it a lot of new questions, I imagine. Here is an idea of why we chose APAW, what happens next and what we are hoping for.

Why did you choose APAW? There’s a lot of agencies out there! 

When it became clear that a change of agencies was needed everything became even more overwhelming than it was before. There are a lot of places that advertise placing service dogs with children with autism, but deeper searching revealed that either they did not place with children so young as J or that they had serious marks against their reputations. I spoke with one agency that with one email sent up all the red flags that had us turning away from the agency we were already with. There was no way we were going to go through that again! Other agencies looked like they might work but multi-year waits or distance were big drawbacks, drawbacks I wasn’t certain we could weather at this point.

I spoke to not only APAW itself, but to people who worked with them, an outside agency that we have worked with since we finished fundraising with the other organization and looked through the background of the staff. It was not a hasty, emotion-made decision. Everyone I spoke with was positive, honest and transparent. Then, we had a several hour interview with the founder of APAW who proved to be an absolute delight. She treated both myself and J with patience, humor, respect and clear personal interest. We were not numbers, J was a person in her eyes. She paid mind to how he interacted with each dog she introduced him to, answered my questions honestly and clearly and gave a great insight into the organization she runs. I knew the moment we walked out of the interview this was who I wanted to work with and who would likely help J best.

What happens next? Will it work like before?

This journey is likely to look a lot different from before. This is one of the things that appealed to me the most. This go, we will be able to hopefully volunteer within the organization as well as work towards J’s dog. Now, the fundraising for the dog was complete two years ago. That money is now with APAW to pay for the placement of J’s dog. However, rather than wait 12-24 months until a dog is fully trained to bring the dog into our home, we are hoping to bring a younger dog in training to live with us instead. This dog could be as young as a just out of their mother’s care puppy or slightly older.

Seems weird, right? Why’d we invite an unfinished dog into our home?

The hardest part of service dog relationships, especially for people on the autism spectrum, can be bonding. It is even harder when the human side of things is a young child. Young children are even more unpredictable than adults and it would be a lie to say J doesn’t have some behaviors that would take some getting used to, namely his volume. The younger we bring a dog into our home, the more normal this all will appear to the dog. They will grow up understanding J’s language as one of their first languages, something incredibly important for any dog but especially poodles who form their social understandings early and solidify them. The noise of our neighborhood, the number of people, the sirens from the police station and fire station, the weird noises the wind makes against our old windows, J’s sounds and randomness… A young dog would grow up with this beside their boy and it would be a part of the air they breathe, just part of their day to day life. An older dog might have to work hard to grow used to a lot of this and runs the risk of never fully acclimating.

The dog will go through full training and eventually go through a class and graduation with us just as other organizations do, the upbringing will just be done in the most advantageous way for a full, life long and happy match. The best way to explain it is we’ll be the puppy raisers or foster family, APAW will be the trainers.

Note that there is nothing wrong with receiving a 2+ year old dog as a service dog. In fact, most organizations place in this age range, especially for guide work or mobility work. These dogs work magnificently for their partners and it is a method that clearly works for a lot of people, it just is not the most likely for success in a case like J’s.

What is the timeline for J’s new dog?

This is fluid right now. Frustrating answer, right? Yet, somehow, it does not feel that way here for us.

The placement of a dog in our home, be they on their training journey already or just starting out, all depends on availability and suitability. They are aware of what we need. Now, it is a matter of whether or not there is a dog started on their training or if we await the next litter(s) of puppies and see if one of them is a decent match.

Yes, you can tell early on if a puppy is likely to have a service career. It involves being a subject matter expert who spends long hours working with their litters getting to know how they behave, but over years and experience it becomes something known instinctively. We are still working with dogs and children here and when working with those groups, there is no such thing as complete and utter certainty. Things can go awry and APAW is by our side to work with us just in case that eventuality comes to pass. They know the hurt we’ve already suffered. They are eager to see that hurt not happen again for us yet we are all aware of the inevitable risks.

Personal hope? I hope that J’s new dog is able to join our home in the early part of 2016. That is a hope, not a definite. We’re in the waiting now and that’s where volunteering we hope will come in. As volunteers we can get to know APAW better plus do something positive with our wait, however long it may be.

If there’s any other questions, I am always happy to do my best to answer.

Our New Journey

It is with great pleasure that I get to share this now!

Our new partners in the journey to reach a service dog for J-Bear is American Poodles at Work (APAW). They are located in central MA, so none too far from us, and are a small organization focused on their strengths. They work primarily with people who require mobility assistance dogs, psychiatric service dogs and a handful of autism service dogs. The placement of dogs from APAW stays within a 200 mile radius from their home base so they can be involved with their clients, something else we deeply appreciate.

But, you might ask… why poodles?

J-Bear currently shuts down when faced with a golden retriever, one of the most common dogs used for service work. Labradors he is open to, but they can still skirt the line of his ability to bond. When I saw APAW and realized there was zero chance of him receiving a dog who by appearances alone he would struggle to bond with, I was intrigued. Poodles are natural people pleasers and when raised with good socialization lead long, happy working lives. We met a half-dozen APAW dogs several weeks ago and had the opportunity to see these dogs shine doing what it was they love. The elder statesman of the group, Charlie, really blew me away. Here he is showing off his stuff in Dogs 101’s episode on the poodle: http://www.animalplanet.com/tv-shows/dogs-101/videos/poodle/ – He is the big cream boy showing off on the white background and in various other bits of the segment.

There are other selling points, such as poodles being low allergy dogs due to having hair rather than fur and the fact that they as a breed are generally very sturdy in terms of their health and known breed issues. They have a long, active life… Something that coupled with a loving, caring home will give J-Bear a partner for many years to come.

He needs this certainty and comfort. We need the ongoing, positive and friendly support of a great organization.

APAW has stepped up and we are so, so looking forward to seeing what the next year brings with it. We are uncertain as to timeline in terms of when J will meet a new partner but as things progress I will of course update. We’re hoping for the first half of 2016 but we’re working with dogs here, which means anything can happen.

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