Dear Elf

Dear Elf,

Happy Belated Birthday!

I don’t think it was a coincidence that you were born during autism awareness month.  If there was ever a blue-eyed boy with autism who desperately needed a friend to help him learn the ropes of the world, it was Caden.  Before we met you, leaving the house was hard—like really, really hard. Open spaces were overwhelming for Caden, and he usually resorted to flight in places such as parking lots or fields.  I lost count of the number of close calls that we had in parking lots.  When we did go out, we tried to keep him in his stroller at cheerleading competitions for his sister because the crowd sizes were so overwhelming for him.  The mall?  Well, that certainly wasn’t even a consideration.  Friends were nonexistent and transitions were a nightmare.  We won’t even mention sleep because it just wasn’t a thing in our household.

Then you came into our lives.  You wiggled and wagged and exuded so much energy that morning we first met you that I had a moment (and I’m embarrassed to say this now) where I wondered how in the world you were going to possibly offer any kind of calm or stability to our boy.  Our first night together at the hotel, though, you went into the bathroom to watch his bath and never hesitated to jump on his bed when he laid down.  And from the moment we drove home after 4 Paws graduation (and he threw up all over you---sorry about that) you two have been together.    

  

You have so kindly accepted all of our cats (even the ones who like to bathe you) and every dog we have brought into the house no matter how ill-mannered or undignified they act (seriously the puppy will one day mature…I think).  When your boy is doing well, you have provided much needed love for Caden’s sister and you have helped our youngest work his way through adoption trauma.  You haven’t hesitated to try to help a stranger in need in the doctor’s office, the school, or where ever you are and are needed.  And sometimes late at night before you retire to Caden’s room, you spend some time and kisses making sure that we are okay too.

You’ve been a pillow, an Ipad holder, a stuffed toy fetcher, a blanket, and a best friend.  You’ve helped Caden explore the world with you safely by his side, and when he’s wandered (that toy store incident was totally my fault because I misread your “get a clue lady, the kid is leaving” message for a “hey I’m a dog and gotta go potty message”..sorry about that) you have safely located him no matter the weather, the location, or the circumstances. 

Without a question you know everything you were trained to do and you do all of your tasks well.  I’m grateful for your ability to disrupt behaviors, ease transitions, provide sensory input, tether, and track.  And if that’s all you ever did, I would forever be thankful for you.  But you are so, so, so much more than that to Caden.  You are his best friend—you are the one who is with him in the middle of the night and he has a bad dream or first thing in the morning when he wakes up and is still disoriented from sleep.  You’ve walked into hospitals and educational settings when we couldn’t go with him.  You have loved him unconditionally and for that I will be eternally grateful for you. 

To be honest, I don’t much like thinking about your birthday because it means you are getting a year older.  But no matter how painful our final parting will be someday, I will never regret our decision to bring you into Caden’s life. 

If I could give you one thing on your birthday it would be for you to know that we love you to the extent and depth that you love our boy.  And that’s pretty much all the way to the moon and back.  Thank you for helping us write Caden’s tale.

Love,

Caden's mommy

When Elf's On Your Side, Anything is Possible

On Caden’s birthday Dan had to leave town unexpectedly for a family emergency.  As you can imagine this had the potential to launch a major autism disaster as did his absence for the next 9 days; honestly it did launch an autism blow up but I think Elf and I managed to minimize the disaster to semi-tolerable levels.  There were some notable highlights and lowlights.....

First we managed to finish out the birthday without too much drama. Caden genuinely enjoyed opening his presents and even requested the birthday song. Now this is huge because as you may recall we’ve had a ban on such songs for several years now. Granted he stopped us part way through the song but it was a sparkling indication that 6 is going to be a spectacular year for Caden. 

Thursday was a dramatic day although probably more so for me than the kids.  I have a huge dental phobia-you know the kind of phobia that doesn’t allow you to walk through the door to a building that houses a dental office or even watch dental commercials. But the appointments couldn’t be rescheduled until well after the start of school (and yes I did confirm that information just in case I had an escape hatch to use) so we headed out.  Caden was an absolute rock star even though he had to have dental xrays for the first time and the assistant wouldn’t allow Elf or I to go back with him.  He handled the exam and cleaning better than I did and the only work Elf had to do seemingly was with me.  We even made it home from the dental office although we may have taken a scenic route home. 

Fast forward through a few major meltdowns and we were ready for Ryley’s birthday party Thursday evening.  Although we were risking life and limb by going to a roller skating arena for the party, I refused to risk Elf’s tail so he stayed home.  Hosting a pre-teen party and keeping an eye on an energetic 6 year old was interesting but thankfully the older kids were all very kind and took turns playing with Caden on the playscape. One of the mothers even took pity on the look of fear on my face and stayed to help me. 

Friday we started a new medication for Caden.  After a long consultation with his pediatrician, we decided that Caden just couldn’t tolerate another surgical procedure unless we were dealing with an emergency.  She shared that trialing him on a new medication would give us almost the same information as one of the tests  because we’d either see improvement or we wouldn’t.  Side effects potential seemed minimal so I was totally and completely sold on the noninvasive plan. The kids and I headed out to pick up the prescription, try to get a few more school supplies at Walgreens, and then try to find the specialty pharmacy that was compounding a few new meds for our cat who apparently has kitty IBS.   Seriously we now have a dog with an ulcer and a cat with ibs—are we just the human and mammal GI disaster household??? This was all pretty uneventful until a stranger climbed into the front seat of the van with us and then proceeded to chat after realizing she was in the wrong car. Note to self: must research how to behave in a carjacking asap as I realized I had no clue although future carjackers should note that I am directionally illiterate so please allow extra time to program my gps.

Saturday marked the passing of another 28 days so the kids were slated for infusions at the hospital. We were able to get the new product in time for this infusion and thankfully both kids’ needles went in on the first try this month. Since I’m already boring you with a lot of details I won’t get into too much on this one other than to say that Caden had a rough time with the new medication and that gray isn’t the best color on him.

A lot of meltdowns, very little sleep, another doctor’s appointment, and a lot of school supply shopping later we headed to Mayo on Wednesday.  The biggest thing I learned on this trip is that I don’t drive our new van enough.  Case in point: Ryley and I had to read the instruction manual in the gas station parking lot in order to get the gas thingy off and we rode home with our windshield wipers on because I either thought it was a good idea or couldn’t get them turned off while driving [I am neither confirming nor denying which answer it is]. I also had to continue to be very thankful that my phone has an amazing gps because our creative route out of Rochester would have put us in the wrong state eventually if gps wouldn’t have kindly ordered us otherwise.  

I don’t know if I lost or won more battles in the last week but I do know that the kids were fed, they got some sleep, the house was semi-organized and clean, and at the end of almost every day Elf and I were still standing. I can honestly say that I needed Elf almost as much as Caden did because he was my backup and some hours the only living being in our household that I could guarantee liked me at that moment.  There’s something reassuring and consistent about a service dog and I’ve got to say he seems to be showing a lot less ptsd than I am at the moment.  Maybe it’s his acceptance of the moment rather than anxiety over past experiences or worry over what’s coming up next.  As long as there’s a little treat every once in a while, he’s ready for the next challenge; although I don’t quite know how yet, there’s a lesson for me to learn in Elf’s demeanor. I’m just hoping that we can substitute out Coke Cola or Starbucks for those stinky little nonvegetarian doggy bites that he so loves!

The Tale of a Super Service Dog

Yesterday something happened that we haven’t been able to do for a very, very long time---years in fact. We were able to make an appointment at a portrait studio, keep the appointment, and actually get pictures taken.  Not just any pictures—pictures of both kids together, and even more amazingly pictures of both kids INDIVIDUALLY. Yep, I mean Caden had his picture taken totally and completely by himself. And we walked out without any tears, if you don’t count the ones that my husband shed as he was looking over the receipt. 

Oh don’t get me wrong, we had limitations. Caden wasn’t going to lay down for any pictures and he was pretty determined that he was sitting criss-cross applesauce, but he was smiling and at least looking in the direction of the camera.  In fact, on our way out, he wanted to know when we could get pictures again. Then my husband cried some more because he knows that this may be the beginning of a very long and expensive relationship between me and the portrait studio because there isn’t much I enjoy more in the world than planning and executing pictures of my beautiful kiddos. And honestly I’ve got years to make up when it comes to Caden, but I probably won’t push my luck……..too much.

So what’s changed? Yes, Caden has gotten older, but the one thing we are finding out the hard way is that autism just gets older too. Challenges exist, they just change over time.  Once we figure out one thing, there is something new to deal with. But maybe that also means that we are dealing with the old things well enough to make them…well…old things that we already dealt with. Maybe the stars and moon were perfectly aligned. Maybe the luck-of-the-Irish was still with us even though we aren’t even close to being Irish. 

My best explanation though is that 7 months ago we met Caden’s “bestest” friend Elf. I know people probably get sick of me saying it, but the dog has truly been a miracle in our lives. He has given Caden so much peace and security in a way we haven’t been able to that it has allowed Caden to explore life a little. We’ve had several successful trips to the mall. We have had some major medical procedures that I’m not sure we would have handled so well pre-Elf. His anxiety level has significantly decreased in public, and even before and after school transitions (something that has always been an ugly process) have become smooth…most days. Most nights he stays in his room, and we haven’t had nearly the number of night terrors that we were dealing with last summer. Meltdowns still occur, but they don’t seem to last as long because Elf’s kisses and “over” seem to have him giggling quicker than any other tactic we’ve tried over the years.

Don’t get me wrong, Elf has not cured Caden’s autism. We still have a good ol’ fashion case of the communication challenged, social interacting nightmarish combination of repetitive behaviors that define autism so clearly. We still, without a doubt, have all of the sensory processing challenges that we have struggled with for years. We are still very much in a fight to give our son the brightest future possible. We are still very much in a fight against autism.

What’s different though is that we have someone else, a furry mass of unconditional love, to help us in the battle. He’s exactly the additional tool that we were hoping for. The more we practice the better Elf gets at hide-and-find (tracking), he and Caden tether well together, and Elf has figured out behavior disruption more impressively than we ever imagined. In fact, he heard Caden’s screech the other day at the playground even though the entire Children’s House (20ish kids), E1 (15ish kids), and E2 (15ish kids) were at the park screaming and having fun as well. What can I say…he knows his boy.

All of this and he also just happens to be Caden’s best friend too.

Back to Chaos as Normal

Today has just been one of those days.  As much as I was prepared for Caden to have difficulty with the time spent at the hotel (which for the most part he handled without too many meltdowns), I wasn’t prepared for being home to be so difficult for him. Sometimes it is almost as though he holds all of the meltdowns inside until he knows that he is in a safe environment.  At the moment he sobs uncontrollably over anything and everything, answers I don’t know to any and every question, and is attempting to pack as many of the new stims that he learned into his day as possible. While his sobs are heart-wrenching and I appreciate his use of I don’t know as a noncommittal way out of questions, it is the stims that are baffling me. We’ve never needed to address his stimming. While we are assuming a let’s wait and see how this unfolds in the next few weeks attitude for the time being, I have absolutely no plan in mind if we find ourselves needing to do something.   

We decided to head over to the park for a couple of practice tracks with Elf and some play time for Caden and Ryley.  Our first track was going well until we heard Caden’s high pitch sob that indicates something is seriously wrong. Thankfully Elf was already headed in the kids’ direction so Dan was able to throw the hot dog party for Elf while I tried to calm Caden down after a very nasty fall on rocks that bruised his back and bottom.  Over to the playground for some fun, I met a woman who asked several questions about service dogs while her kids petted Elf (who as usual absolutely adored the attention as if he doesn’t get any attention at home). I was relatively pleased by the woman’s questions until she asked if Elf was Caden’s seizure dog. I replied no, actually Caden has autism to which she replied oh I’m so sorry and then walked away.  I’ve never had the apologetic response before and honestly I had no idea how to respond. Anything that renders me speechless is definitely worthy of reflection and I have a feeling I will be rethinking this one for days to come.

Track 2 ended very similarly to track 1. The kids and I were walking back through the parking lot to hide when Caden fell and busted his knee. Elf found us rather quickly but I have a feeling it was more by sound (yep the high pitch sobbing sound again) than scent and he was probably thinking that getting the hot dog party just gets easier and easier with this family.  By the way, the hot dog party is absolutely killing me…strangely vegetarian hot dogs don’t seem to equal a party for Elf so at the moment I am trying to be okay with kosher hot dogs.

 

Back home bonding time went just about as well as tracking did. Take 1 had Caden and Elf bonking heads to which Caden swears Elf hit him. Take 2 had Caden and Elf running up stairs together to share their excitement over playing Frisbee (thankfully Elf loves to play Frisbee and is so great about giving the Frisbee back to Caden each time) and them tripping over each other; Caden swears Elf pushed him.  Interestingly Elf is starting to recognize the high pitch sob as being one that needs attention—then again we had plenty of opportunities to “mark behavior” today.  We are having Elf give kisses when Caden starts sobbing as that does seem to serve as a distraction that doesn’t increase Caden’s anxiety or frustration while also not diminishing pain or other feelings that he may have at that moment. 

It is amazing how quickly life resumed after returning home, somehow a re-entry adjustment period would have been nice. But then again I guess if we had the luxury of down time or adjustment time or sleep then we wouldn’t be dealing with autism would we?

Day 4: Elf Training Continues at the Mall

I think the phrase dog tired is about the best descriptor for Day 4. The dogs are tired because they aren’t use to working all day every day; given the number of dogs to be worked with every day, the trainers work with each dog for a few hours each day but the rest of the time is for sleeping…..not so much now. The kids are tired; the novelty of new spaces and toys has worn off and they want to go home. I think any child would feel this way about now but for kiddos on the autism spectrum those feelings are magnified through the roof. And let’s not forget how tired we are trying to balance being a parent/handler/student/spouse.  

Today was the perfect autism storm. We started out breakfast with juice drama—it was another cranberry juice day and there weren’t biscuits OR pancakes.  We were already nervous because it was the first time we had taken Elf down with us and the added difficulty over breakfast choices certainly didn’t help.  Elf, as usual, was a champ but it was hard to keep an eye on him while dealing with Caden and trying to inhale my requisite dose of caffeine. It was a service dog land mine in there….crumbs everywhere and licking or eating crumbs is considered breaking a command in favor of a distraction and must be immediately corrected. I know that probably sounds harsh but the last thing you want is to give the track command to your service dog because your child is missing and the dog stops to pick up some loose French Fries in the food court. 

We began the training day with another track session. We went to a much larger area with more wooded areas and tall grasses. We also didn’t hide a trainer with the child today so the dogs really had to search for the child’s scent and not the more familiar handler’s scent. Caden and I hid in the woods (I held him to keep him out of the weeds---the last thing we need is to trigger another hive episode); we had “bug bands” on but that didn’t protect my legs in the slightest. I look like I have the measles or the plague or something horrific—I have a hypersensitive reaction to mosquito bites so I look lovely in addition to itching like crazy.  Elf didn’t suffer the same fate and did a remarkable job of finding us even as he was interrupted by a neighborhood dog and incredible heat. 

Back at the training facility Dan dropped us off and ran to the drugstore to find any and every anti-itch cream he could find for me.  Meanwhile Caden melted down again and any hopes I had of taking notes or listening while the trainers covered how to put the service halter on was long gone. When they handed me the harness to put on I think I could probably have come up with a seafood menu quicker than I could figure out all of the snaps and clips and pulls and pieces of the harness and that’s saying a lot since I’ve been a vegetarian since my fateful 3^rd grade field trip to the meat packing plant (hey don’t laugh it’s a true story and I’m still traumatized).  Elf seemed to know I wasn’t going to get this one anytime soon because he just laid down and refused to get up (Poor dog was probably remembering my inability to get him out of his kennel the other day and was thinking ah man I got the stupid one again today). So I did what any dignified person does in front of a group of people that they’ve known for 4 days…I sobbed like a baby.  Yep, r-e-a-l-l-y proud of that move. Eventually Dan was back and we got the harness on Elf and demonstrating our commands went well.

After a late lunch we headed to the mall for our first public outing. Now I love a good mall and not much makes me smile quite like retail therapy but the prospect of heading into the mall with Caden and Elf was a bit more than my stomach could handle (thankfully most people seemed to have the same stomach elephants). It is one thing to go through the commands and work in front of people who are in the same boat but a totally different story to do all of this in public where it feels like EVERYONE is watching you. I’d love to say that it’s just a feeling but in reality when you walk into a public place people do stop and stare at the service dog and while most people are really quite kind you do attract a lot of attention.  Interestingly though it is more positive attention than you get when your child is eating his lunch under the table or is spinning his way down the store aisles.  

Dan and I each took a trip around the mall with one of the trainers for individual critiques and feedback. It seems like our certification test will most likely occur at one of the malls---that test/certification process is hanging over our heads every day.  I’m sure the trainers will more than teach us what we need to know and the dogs are already trained but it is just a matter of not letting nerves take over. 

I still feel weird walking into stores with Elf but I did manage to overcome my anxiety and nerves long enough to pick up a pair of really cool pants at one of the stores. Maybe they’ll help with the morning track or better yet maybe we’ll actually think to take the OFF out of the jeep and actually put it on. 

ELF

Today has been an amazing day. We received an email titled Dear Caden; it was what 4 Paws 4 Ability calls a “match letter.” In that letter were the name and a picture of our service dog. ELF—such a short name, but what an impact it has had today. Even Caden is excited that the doggy in the picture is going to be his. 

I think we’ve been climbing a mountain since July 2009. It was both exciting and terrifying to receive that packet in the mail from 4 Paws letting us know that we had been approved for an autism service dog and that we could officially begin fundraising. $13,000 dollars is a lot of money, but that same month we had moved to another state where we didn’t know anyone and I honestly didn’t know how we were going to raise that money. I also didn’t know how we would share our story because I wanted to protect the kids and honestly our hearts from disappointment and the negativity that is sometimes associated with anything having to do with autism. But we also knew that we had to do it; having a dog that was trained to search and rescue, tether, and engage in behavior disruption was one more opportunity to let both of our kids just be kids. It would give Caden another constant in his life that could be with him at school, at the hospital, or playing in our house/yard and it would free some of our attention to make outings easier on Ryley as well. 

So we began climbing that mountain. It wasn’t easy though and I’d be lying if I didn’t say that there were a number of times that I thought to myself that we’d never raise the money and should just quit now. My husband was the new department chair and his job prevented him from being active in the day-to-day fundraising operations. I was teaching 4 or 5 online classes that  I had never taught before and during this time Ryley developed a staph infection in her eardrum that required us driving 3 hours to Cincinnati Children’s Hospital one or two times a week for months. 

However, like climbing a mountain, every time I thought the climb was over there would be another phone call for an interview or an email with a fundraiser. Thankfully I sent emails to the right organizations and found several college students who were willing to go above and beyond the call of duty. They continually found new ideas for fundraisers and I muddled my way through creating a website and Facebook group. Each new foothold would move us a little closer to the top of the mountain.

We finally reached the top and the letter came in the mail stating that we had completed our fundraising responsibilities. Climbing the mountain was tiring though and it took us awhile to realize that we were truly at the top. Honestly I don’t think we completely began to enjoy the view until today when we met ELF in that email.  It feels real and we can finally see how beautiful the view is from the mountain top.