Tuesday, July 31, 2012


Tigger has been with us just a little over two months now -- which is hard to believe since his larger than life presence (I mean that literally -- he is 70 pounds and growing!) is already a fixture in our home. We've fallen in love with him and I know he loves us back.

Tigger is the friendliest, most affectionate dog I've ever encountered -- in fact, I think his love of people, especially children and the elderly, is going to be one of his biggest challenges as a serious service dog. He often gets distracted by his love of love, and can forget what he is supposed to be doing (it took me an extra half hour to pick up a prescription from Target this week because of all the old folks Tigger had to love on -- though this is my fault, too. He is so sweet that I don't have the heart to stop him!).

Tigger is also very smart. Smart enough to learn and follow many commands; and smart enough to decide when he doesn't want to follow them. Like a little kid, he tests his boundaries to see what he can get away with; eating Simon's leftovers and the cats' food, stealing toys, and barking at strangers passing by the house (I'm pretty sure he just wants them to stop and say "hi") are his most frequent infractions. Over the past several weeks Tigger has figured out that I don't like to yell, Olivia is a big mush for his fuzzy face, Brian is the "alpha" but has a soft spot for happy puppy antics, and Simon is... well, Tigger still seems to mostly see Simon as the "other puppy."

It hasn't been love at first sight for Simon and Tigger, which has been hard for me to admit even to myself. Along with everyone else, I wanted the "Hollywood ending" to our boy-meets-dog story; particularly after the incredible outpouring of support given to bring the two of them together. A part of me knew that it couldn't be like that; because it has always taken plenty of time for Simon to adjust to anything different, and this dog is whole lotta different. I knew this, but it wasn't what I wanted, and I worried about their relationship. A bond with a service animal is something that can bring stability and safety to Simon's life on a long-term basis, which (like any parent) I desperately want for him.

So, being me, I had to do something (I'm really not a wait-and-see person. I'm not sure if this is a fault or a blessing?). Though I know that some things can't be forced, I also know that most things can be helped along if approached in the right way, so I did some research (you're shocked, I know) and then I looked for some help.

Since the autism seems to me to be the biggest challenge in this (or any!) relationship, I started out by researching autism and service dogs, more specifically service dogs for people with autism. I wanted to know what those relationships are typically like (if there is such a thing as "typical" when it comes to autism), and I wanted to know what a service dog can do for a person with autism. We know what Tigger can do to help us with Simon's seizures, but it occurred to me that maybe there are other things Tigger can do for us when it comes to his cognitive and communication disabilities.

I found out that the autism service dog relationship  (it is worth it to mention that most of what I found had to do with children and autism, not so much about adults...no idea why) generally starts as a 3-way, not a 2-way relationship. The dog, the child in need, and the caregiver(s). The dog knows that the child is not the alpha, so a broader relationship is needed with the child taking on as much care for the dog as they are able. Over time some children are able to care independently for the dog and establish a 1:1 relationship but like all things with autism and disabilities, this varies depending on the individual.

In regard to a dog's autism-related service function, I found a ton of information on their therapeutic benefits both at home and even in the classroom (there are even reading programs that use the dogs in schools!) -- but this is mainly what I was expecting. Judgement-free companionship, developing empathy through caring for an animal, and establishing a bond through both nonverbal communication and verbal commands are all great for kids on the spectrum; we've already seen this with Simon. But... these are benefits that could be obtained through use of any well-trained and kid-friendly pet. They are not by definition a service animal's role.

What I wasn't expecting to find is that service dogs for autism have a very conventional service-dog role (even more conventional than a seizure dog!). An autistic person's safety and functionality are compromised because their perception of the world is impaired. Traditionally, a service dog is trained to pay attention to what their human cannot, and then assist that person accordingly. It is generalizing a bit, but essentially this concept isn't any different from the way a blind or deaf person uses a service animal -- something most of us are pretty familiar with.

I honestly don't know why I had thought that they would do something more avant-garde. In retrospect it makes complete sense, and I even wonder why more people aren't using service dogs for autism currently -- though interest in it does seem to be on the rise.

After all the research, my next step was to determine what to do with all the info. To figure that out, I knew I would need help. Training both Tigger and Simon for multiple purposes is going to be quite an undertaking.

First, I spoke with Tigger's trainers from Noelle's Dogs Four Hope about what had been going on with Simon and my thoughts on how Tigger can help us, not just with the seizures but with the autism as well. Much to their credit, they are not only willing to help us train Tigger for both purposes, but they have been excited by the opportunities it presents and have been actively doing their own research and communicating with us about what we can do moving forward. (They are truly awesome people!)

Next, I made an appointment with a behavioral psychologist. We'd been offered this service ever since Simon was diagnosed with autism, but I'd put it off thinking that it was really only meant for parents that had "lost control" of their particular situation. This is another great example of "Laura being wrong" (how many are we up to on this blog?). The more I thought about it, the more things I realized I needed help with. Not because Simon is out of control, but because I want to find as many ways as I can to help Simon be as successful as possible. We are in many ways blessed, but we also have a lot of challenges; Simon's relationship with Tigger is just one (safety awareness, attention difficulties, and coping with stress are a few more..). Last week we met with our therapist for the first time and I think it was a very positive step. He thinks we can address all of the issues we brought up, and we made some great goals. Best of all, he thinks that Tigger's presence in Simon's life is a GREAT thing. He confirmed that developing a 1-1 Tigger-Simon relationship will take time (a lot) and work (a lot) but the benefits for Simon have the potential to be huge. (He also didn't seem think that I am crazy, which is a nice bonus.)

So, we have a lot to work on, but I can say that already we have made a lot of progress -- Tigger knows that Simon is the one that feeds him, he will sit for Simon on command, will walk nicely beside Simon when he practices holding the leash, and he only steals Simon's goldfish crackers when he is pretty sure Simon isn't looking. Simon also recognizes that Tigger is his dog. He will answer questions about Tigger, he seems to enjoy the process of feeding Tigger, and he likes to give him commands and treats. He doesn't even mind when Tigger plays with his toys (Tigger loves any ball or stuffed animal). Simon also continues to talk to Tigger a lot, mostly using complete sentences, which is pretty amazing.

We may not have had our love-at-first-sight Hollywood beginning, but the drama is well underway, and I do believe that we will have our happy ending. The boy and dog will live happily ever after, but it may take quite a storied arc to get us to that conclusion.

Stay tuned! 

Monday, July 23, 2012


I'm going to tell you a secret: today, I have not been okay. Simon is back to normal, and all's well that ends well, except I'm not... yet. I do know that I will be -- I've been through this routine -- this low in the wake of an adrenaline-pumping-life-threatening-emergency -- enough times to have it feel routine, but it still catches me a little off-guard.

Each time, I try to convince myself that I've toughened to the level that I will no longer be so affected. I tell myself that I can handle everything and anything and keep on keepin' on... but... It always ends the same. I am tough as nails as long as I need to be, but as soon as I know that everything is alright I start to crumble. I've been on the verge of tears all day, I haven't been able to focus on my work, and (though I have slept since the weekend's marathon) I am bone-weary tired. I remember once reading that the stress levels of special needs parents can resemble those of combat soldiers. On days like today, I believe it.

So, what's a good soldier to do? Fortunately, I know this routine, too. Just as I have a plan to cope with Simon's crisis, I have a plan for my mini breakdown post crisis. (I'm a little type A, deal with it.) I'm sharing my outline below just in case you are ever in need of a pick-yourself-up-by-your-really-cute-shoes survival guide. Introducing:

Laura's 5 step program to coping with the post-post-crisis-crisis:

1. Buy a new pair of really cute shoes. This is extra effective if you have a coupon to DSW. Sadly, this time DSW had nothing I liked, so I cashed in my Bed Bath and Beyond Coupons (the shops are next to each other, it was kismet) to get myself a robot vacuum. I've only had it for a day and I love this thing. Not only did it serve as my stress-purchase BUT it cleans my house, too! All by itself! While I watch sipping a glass of my favorite vino! Which brings me to step 2...

2. Have a beverage of choice (or two). Not enough to cause a headache tomorrow, just enough to loosen that clenched jaw and the knot between your shoulder blades.

3. Now that your jaw is unclenched you're ready for a good cry. This is best done in the shower. I swear the shower is the very best place in the world for a good cry. Just stand there in the steam and the stream of hot water and let it go. Magically, you emerge a much calmer and more rational individual.

4. Hug your family and remember you ARE all okay. Pet the dog. Get into a tickle fight. It isn't possible to be sad with all this cuteness around you.

 5. Know in your heart that you got through it, again. Know that if you did it once.. twice.. (four times, who's counting...?), you can do it again. 'Cause it will happen again, and maybe next time you'll be able to just keep on keepin' on. Be as tough as you know you need to be.

And if not, I've got a list.

Sunday, July 22, 2012

Status Update

Friday night, after a pleasant family trip to the mall (incuding Tigger), I had a strange urge to check the emergency bag I'd packed months ago for impromtu trips to the hospital. I don't know why, I just felt the need to make sure all was as it should be, just in case. iPhone chargers, ear phones, instant coffee, yoga pants and top, socks, Simon's yellow blankie (we have multiples), toothpaste and toothbrush for me and Simon, hairbrush and tie, tissues, notepad, pen. It was all there, but I did decide to add a few pull-ups for Simon since they never have them at the hospital. I zipped the bag and went to bed.

It has been a pleasantly busy summer so far. I've had lots of great projects to work on, the kids have thoroughly enjoyed their new babysitter and their inclusion summer camp, and we took a lovely trip to the beach just a few weeks ago. Most especially, this has been the summer of Tigger. Right away we came to love having him in our family. Getting to know him, getting he and Simon to bond, maintaining his training, and just adjusting to life as dog owners has been a big focus of our day-to-day over the past several weeks. (I promise a more in-depth Tigger post later this week).

Things had been going along smoothly until Friday night. About an hour after going to sleep I heard Brian calling for me from Simon's room and I immediately knew what was wrong. Brian had seen Simon suddenly sit up in bed on the video monitor (Brian is a night owl) and, when he went in to check on him he found that Simon had vomited and was in the beginning stages of a seizure. 

We waited the required five minutes, but the seizure did not stop on its own. We gave a new emergency med (nasal diastat), which slowed but did not stop the seizure, and then called an ambulance.

While waiting for the paramedics, Simon lay on the floor seizing with Brian and Tigger by his side (I ran out to drop Olivia off at a neighbors house and flag down the ambulance). Tigger sniffed Simon all over and stayed close, but as he is not yet specialty trained, he didn't know what to do. Since this was Tigger's first experience with a big seizure I have to assume that it was simply a good introductory learning experience. Sadly, the only way Tigger will get to know and recognize Simon's seizures is for Simon to have more seizures. Ugh.

As usual, the paramedics had to take us to the closest hospital, not our preferred hospital. Usually, this is a disaster, but (I can admit to being pretty pleased with myself) through really awesome preparation that I intend to make even more awesome, I was able to make it a successful trip. After our last status episode, which was quickly and successfully treated at Hopkins, I requested a list of the drugs and dosages that they used. I wanted to have a record of what they did since they were able to stop the seizure without causing a coma (not being in a coma is a really good thing). I took a photo of that list (signed by our neuro for authenticity's sake) and keep a copy in my phone so I ALWAYS have it with me. I was able to show the list to the ER doctor and insist we follow it to the letter.

I did have a bit of a squabble with the doc about this. Apparently, the meds we used aren't typical protocol for a status seizure (a medically induced phenobarbital coma is actually the protocol), and the med that I really wanted was not immediately available. I was polite, but I had to be quite firm and more than a little pushy (I believe I asked the doc how many status seizures she had seen and then pointed out that I was a lot more experienced in this particular area...). Nonetheless, it still took a half hour to simply get the medicine we needed for Simon from their pharmacy to the ER. But, once we had it and loaded Simon with it -- the seizure stopped. Two and half hours after it started.

Despite the fact that we'd stopped the seizure, the hospital still transferred us to Hopkins (they seriously can't wait to get rid of us, it is almost comical). During the ambulance ride to the second hospital I mentally braced myself for Simon's usual (warranted) terrified post-ictal state, when he'd wake in a few hours to find himself in the hospital attached to so many wires and tubes and machines. Compounded by the misery of being stuck there for at least the next 24 hours. 

Simon started to wake up (and freak out) almost as soon as we were in the ER at Hopkins. After we got him settled and he finally fell back to sleep, the doctor pulled me aside into a private room. There, she confessed that she has a 10 year old autistic son. She told me that she understood some of what we were going through personally and she knew that, in my shoes, all she would want would be to take her boy home so he could really rest as soon as possible. "You look like you know what you are doing," she said, "is that what you want, too?" 

My eyes filled with tears and I nodded hard. To avoid a hospital stay would absolutely be best for Simon and I absolutely did know what I was doing. She asked us to stay for another hour so she could watch him, and she made me promise to bring him back at the slightest sign of trouble, but she went ahead and got our discharge ready so we could leave right away.

As we left, I thanked her profusely and noticed that she, too, had tears in her eyes. "I can't take it away," she said, "for either of us. But if I can make it just a little bit easier, than that is what I am happy to do." 

Tigger stayed by Simon while we were in the ER...

and he held Simon's hand on the way home...

and watched over him while he recovered.