"We live in a rainbow of chaos." - Paul Cezanne

Monday, October 28, 2013

It's More Than Just A Bubble Bath

"In order to understand the world, one has to turn away from it on occasion." - Albert Camus

Earlier this month I went on my very first overnight business trip. Once the novelty of the idea wore off, I realized that I would be spending two days and one whole night away from my little family (something I have never done...as long as you don't count the night I spent in the hospital following gallbladder surgery). The sadness of missing them should have been on the forefront of my mind, but instead I was thinking about a quiet evening to myself. Reading without distractions. A luxurious bubble bath completely uninterrupted. Burning candles without worrying that my child or animals will set fire to the house. Stretching out in a bed I didn't have to share with my husband + cat + dog. What was wrong with me? Absolutely nothing.

I love my family and spend almost every waking moment devoted to their needs. When I am not at work, I am a full-time mommy to a beautiful autistic child. I leave for work before Conor and Maddie are even awake. I pick up Maddie from school after work and head home for behavioral therapy sessions two days a week and spend the other evenings making sure I keep her out of trouble. As parents of an autistic child, we spend most of our time with Maddie being constantly vigilant and prepared for every worst-case scenario that we can imagine. There is no down time. No rest. No taking our eyes off of her for more than a few seconds. Maddie is curious and fearless, a combination that can be a parent's worst nightmare. Couple that with a high pain tolerance means any lack of vigilance can lead to very scary, very dangerous situations.

We are very lucky to have built a support system over the years that helps us cope with the demands that Maddie's autism has put on us. Regular speech and behavioral therapy have slowly begun to increase Maddie's ability to communicate with us. Maddie's grandma and aunt take her for the day about twice a month to give us a break. But the most amazing support comes from Maddie's teacher, Ms. Kelly, who not only gives Maddie the tools she needs to make it in today's world, but the love and support to be the best little "superhuman" she can be. Because of Ms. Kelly, Maddie will enter this world proud of who she is and armed with the knowledge that there are those out there who will accept and love her for who she is--no matter what. She goes above and beyond anything we ever expected, and if there is one person we couldn't do all of this without, it is definitely her. (Ms. Kelly, if you are reading this--you are OUR superhuman!)

Speaking of amazing teachers, I will never forget what my Advocacy/English teacher, Ms. Moore, told me when I was a senior in high school. At the time I was overwhelmed with school, my dad had cancer, I was working part-time, and deciding whether I should go away to college or stay close to home. She said, "Elisa, you can't do it all. Sometimes you need to let some things go. Not everything is so important. Figure out what you can give up, and then spend some time taking a bubble bath. Take the time to do something just for you." At the time I couldn't imagine what I could possibly give up--everything is important when you are a teenager. But those words of advice have lived with me for over 15 years because they hold a ring of truth to them. They are a constant reminder to me that the only way I will be able to face each exhausting and demanding day is if I find a way to take time out for myself.

The trip to Millersville University in Lancaster, PA was great. I got to learn a lot about something I love (cataloging), and had good company while doing so. Armed with two beers during dinner, I headed back to my hotel room to do what I had planned all along...take a glorious bubble bath. I had packed candles, epsom salt and bath bubbles, along with the current book I was reading. Zero responsibilities. Peace and quiet. A mother's dream.

I sat in that tub for over a half hour but could barely read a single page. In all that quiet, my mind was racing. For the first time in a long time, I wasn't bogged down with my day-to-day worries and anxieties. Instead, I was able to view my little world almost completely outside of myself. (And no, no mind-altering drugs were consumed.) And all I could think about was how my whole life had led up to this one moment. That one bubble bath was more than just a bubble bath, it was a decision to take care of myself. It was a conscious effort to take advantage of what precious little time I am given to let everything else slip away and just BE in that moment. Once I had done that, the bubble bath itself was no longer important.

Curled up on "my side" of the room's king-size bed with my unread book, I don't even remember falling asleep that night, and the next thing I knew my alarm was going off. At first I kicked myself for not taking advantage of more "me" time, but really, that whole trip was "me" time. And after a grueling 9-hour trip home and hours of stop and go traffic, I finally came home to my little family. Maddie was already asleep, but Conor greeted me when I got inside. "There's a plate of leftovers in the oven if you're hungry. And I got you a Blizzard from Dairy Queen--it's in the freezer. I figured you might need it," he said. I may have had a hard time prioritizing my life when I was in high school, but as an adult it has gotten a lot easier. My little family fills my heart and gives me joy--they are my priority. Everything else just falls in line. And even when it seems as though there is no time for "me," I have a husband who knows my needs before I do and is someone I can trust to hold things together when I need to let go. That partnership is what I'm truly thankful for...especially when it comes in the form of ice cream.

Tuesday, October 8, 2013

Dog Days

"Animals make us human." - Temple Grandin

We got a dog. We got a dog. I have to keep saying it to myself over and over because I'm still not sure how this all happened.

My husband Conor and I both grew up with dogs, but while I am very much a cat person, Conor is definitely more of a dog person. To be fair, we have lived together for over ten years and in all this time he has been happy with just having cats. But over the past five years, we have worked our way back down to one very lonely and neurotic cat. And the idea of having another baby anytime soon puts me in a panic, so naturally the topic of getting a dog just kept coming up.

Then Conor read about a family in Scotland who got a dog for their autistic son and saw dramatic changes in his behavior and ability to communicate. (Dog Helps Boy Come Out of Autism - A Friend Like Henry) After our terrifying experiences last month, he suggested that having a dog around might be beneficial for Maddie's autism as well--another set of eyes and senses that could tune into a side of Maddie we've been having trouble reaching. Being familiar with our local organization Therapy Dogs United and knowing how beneficial a dog could be in our situation, I agreed that this was something we should seriously look into.

Next came days and days of reading about different breeds, and using various online dog breed selectors like this one on Animal Planet. Just when we thought we had the right dog picked out for us, we'd find out they were too rare or way too expensive. On to Plan B... check out local shelters. At one pet foster home, Conor and Maddie found a Manchester Terrier/Shetland Sheepdog mix puppy who was a little shy, but sweet and very cute. Maddie and the puppy seemed to get along well, so Conor brought him home (much to my surprise). We named him Scooter (after the Muppet) and for the next two days, our fragile little world went from "finally things are back on track" to "how could we have screwed things up this much?"

(I'm going to preface this next section by saying that I have been reluctant to make this post due to the overwhelmingly negative experience we had with Scooter. I expect there will be those who are critical, but I have made peace with our decision. Having a daughter with autism leads to many unexpected bumps and turns on the road of life, and unfortunately this was one of those times.)

Scooter was a good dog, but by the end of the first day he was temperamental, peeing and pooping all over the house and his crate, and glued to Conor's side. Our first real indication that something was not right was when Maddie was sitting on the floor reading her books and Scooter wouldn't stop growling and barking at her. Not a happy, playful growl/bark either. We were prepared for an adjustment period but the more time he was with us, the more aggressive Scooter became and the less he liked Maddie. Now, Maddie is usually a ball of energy, and her unpredictable nature makes some animals (like my neurotic cat) more on edge than others. But this was a puppy. He was supposed to feed off her energy and want to play and run around. Cover her face with puppy kisses and nibble her toes. Nothing. And Maddie was still recovering from the anemia she developed following her emergency surgery, so she was mild at best. This was no unpredictable kid.

The next day was even worse. Not only would Scooter growl and bark at Maddie for no reason, now he was doing it whenever Maddie tried to go near Conor. Instantly we noticed that Maddie was starting to avoid Conor, even if the dog was not with him. Usually a daddy's girl through and through, Maddie no longer wanted to sit with him, hug or kiss him, even be picked up. She would FREAK OUT. And because she is nonverbal when it comes to her feelings, we had to intuit what all of this could mean. Not an easy task. At school she seemed fine but as soon as she got home you could see the unease and panic on her face. Her home was no longer the safe, comfortable place she relied on it to be.

After a stressful evening of tears and meltdowns, Conor and I sat down together after Maddie went to bed and had a long discussion about what our options were. Do we keep Scooter and hope the situation improves? What happens if he gets too attached and we have to find a new home for him later? Will that be even harder for him? Was getting a dog the biggest mistake we ever made? Would giving him up make us horrible people? My stress level was through the roof as we broke it down and decided that ultimately, Maddie's feelings (though not expressed) would have to be our first priority. She was clearly scared of him, and for some odd reason, Scooter seemed to feel threatened by her as well. This was not a match made in heaven.

We decided to sleep on it and wait to see if there was any improvement in the morning, but to no avail. When Conor went upstairs to wake Maddie up for breakfast, Scooter lost control and nothing I could do would calm him down. With Scooter barking and growling his head off downstairs, Maddie refused to come downstairs at all. I ended up staying home from work that morning just so I could get her ready for school and comfort her upstairs while Conor tried to keep Scooter calm downstairs. This was a mess.

So Scooter was returned to his foster family later that morning, which I know really broke Conor's heart. We felt like we failed him, and maybe we did. But Maddie is our number one priority and we got the dog to benefit her needs first and foremost. If we were serious about getting a dog for her, then we had to go about it in a different way. I suggested we take a few days to let things calm down and then resume our search.

To be clear, Maddie is not generally afraid of dogs. She can be timid when first getting to know them, but has never been outright afraid of them. She spends every other Sunday hanging out with Grandma and Oma's dogs and has a blast. So maybe we needed to focus more on the dog's temperament and find one that fit our needs based on that. A friend recommended the Cavalier King Charles Spaniel, and we knew that Maddie had experience with this breed since Conor's dad has two of them and she did well with them. But we had initially written it off since they can be rather pricey and we refused to buy from a puppy mill (or the store in the mall that is supplied by them). It looked like getting a dog was going to be put on the back burner.

During another heart-to-heart with my husband, I admitted that dogs make me extremely nervous. I remember being afraid of dogs at a very young age, and vividly remember having to hold my youngest sister and cradle her bleeding head while rushing to the ER after she was attacked by a dog (I was 11, she was 2). Needless to say, dogs and I have some serious trust issues, but I don't want Maddie to ever develop those same issues, so it was important to me that we find a dog that I was also comfortable with so that I could lead by example. I told Conor I wanted to be part of the process of choosing a dog this time, and if I wasn't comfortable with it, then there was a good chance Maddie might pick up on that nervousness and have issues herself. Having felt comfortable with Conor's dad's dogs the last time we visited, we focused on the Cavalier King Charles Spaniel breed and decided to try and find a breeder so that I could at least get familiar with them (especially as puppies) before buying one.

More research. Research, research, research. I swear my husband spends more time doing research than anything else. (Why is he not a librarian?) One internet search turned up a family who bred CKCS in Spartansburg, PA (about an hour south of us in the middle of freaking nowhere). The puppies were a third of the prices we'd seen, but I immediately saw red flags. He also bred several other breeds, and happened to have those puppies available as well. Another quick internet search for his name turned up a small Amish general store located at the same address he'd listed. Our hearts sunk. Know that saying about if it seems too good to be true?

There are numerous Amish and Mennonite communities around the area we live (mostly in Ohio and Pennsylvania), and they have been at the center of debates regarding puppy mills for several years now. The problem with the Amish dog breeders is that they consider their dogs to be another form of livestock. Most of the time the dogs are extremely over bred, bred too young, and kept in deplorable conditions. Breeds of dogs that are prone to certain genetic disorders are more likely to develop said disorders if they have come from a puppy mill, and the dogs can develop a slew of other medical issues as well. Dogs are expensive to begin with; a puppy mill dog, though inexpensive at first, could end up costing more in the long run than paying for a more expensive dog from a reputable breeder. (See The Puppy Mill Project)

On a rare Saturday where Conor and I were both off work, we decided to take a day trip around Erie County to see the fall leaves changing and swing through Spartansburg to see if we got the puppy mill vibe. As we ventured deeper and deeper into the countryside, the endless fields of corn kept bringing up images from Stephen King's Children of the Corn. It didn't help that we kept passing horse-drawn buggies and endless trails of horse poop on the road, with no other cars in sight. GPS took us off the main country road through town onto a teeth-chattering dirt road scarred with wheel tracks. I told Conor if random children started popping up out of the fields at any point in time, he was to turn around immediately and get us back to civilization. But I digress...

We rolled up the gravel drive past the closed general store to find a modest country home and farm. Amish children were playing in front of the house, throwing around what looked like a ball in a sock, as the older family members looked on from rocking chairs on the porch. But when we were led back to the puppy cages, I fought to keep the look of disgust off my face. The puppies, at least 8 different "purebred" breeds that I could see, were penned up outside on concrete slabs, squirming around in their own filth. At one point it seemed as if Maddie, who gags at very strong and unpleasant animal smells, was going to vomit, so I took her away from the puppy pens to walk around the farm. We saw horses, sheep, ducks, even quails and rabbits living together, but not a single dog. Where were all of these "family pets" that they claimed to have? Towards the back of the property I found my answer. Outdoor cages stacked two high and eight wide lining a small shack housed the poor dogs. These weren't family pets, they were livestock just like the other animals. This was not where we would be getting our dog.

I returned to find Conor snuggling a miserable looking CKCS , whispered in his ear that we needed to go, and we thanked the man for his time. On the drive home, feeling dejected, we talked about whether there was any honor in rescuing a puppy from such a horrible place, but decided there was no way we would give them any of our money and support such a "business." Conor thought the man should be reported to the authorities at the very least. As we approached another buggy on the road, he passed them and shouted, "How's that for horse power?!" (Not gonna lie, I smiled a little.) The drive home was somber, and the prospects of finding the right dog for us seemed slim.

What came next? You guessed it... more research. But this time it led to a nice family in Ohio who happened to breed CKCS--they were purebred and registered with the AKC, they just weren't bred from championship lines. (For us, purebred was not as important because of the title, but because of rare heart conditions that can be prevalent in the breed. A healthy CKCS is one that is bred properly based on strict guidelines.) But we weren't looking for a future show dog, we were looking for a new addition to our family, one that was right for all of us (including the neurotic cat). Best of all, it wasn't going to break the bank to purchase one. And that is how we came to find our new dog Toby (named after the dog used by Sherlock Holmes).

Toby is a good-natured, gentle dog who loves to snuggle with all of us (including the neurotic cat), give kisses, and play fetch. You can't help but fall in love with him when he looks at you with those soulful brown eyes, and laugh when he gallops through the room with a goofy smile on his face and his big ears flopping around. He loves to chase the cat, and the cat is surprisingly okay with him. But most importantly, he loves Maddie and Maddie loves him. And that makes this roller coaster of a ride worth it every step of the way.

No matter how much research you do and no matter how much you think you know, every dog is different just like every autistic child is unique. Looking back, there was a good chance Maddie would not have done well with any dog living in our home. As autistic parents, we constantly advocate that if you've met one autistic child, you've met one autistic child. Autism manifests itself differently in each child, and while a dog might have been the saving grace for one, it may not for another. As Maddie's parent, I should have realized this but it is an easy thing to forget in our day-to-day lives. Luckily for us, perseverance paid off and we found the right one.

So now we have a puppy, and though my days are filled with potty training and saving rogue shoes, I'm proud to say that Toby is slowly making me a "cat & dog" person. For the first time in my life, I've let a dog lick my face and sleep in my bed. On purpose folks. He's a great addition to our little family and I'm so glad we found him. And honestly, how could you not love this face?!

Thursday, September 26, 2013

The 1-3% Chance

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' . . . You must do the thing you think you cannot do." - Eleanor Roosevelt

I have experienced a few traumatic events in my life (ones that I'm sure will pop up in future posts), but none quite like what we endured this past weekend. But first, some background...

My daughter is autistic. Beautifully crafted, our own little human Himitsu-Bako, she lives in a world we spend most of our time trying to reach and better understand. Hundreds of hours of therapy have revealed an affectionate, bright, and capable child, who struggles with language and emotions she is unable to express. As challenging as they are, we embrace her differences and focus on giving her the tools she'll need to navigate through this crazy world and helping others better understand her in the process.

Because of her autism, Maddie is susceptible to various health issues. One that we have been battling since she was 6 months old is her inability to breathe through her nose, especially at night. Her doctors told us it was allergies--use a humidifier, saline spray, Vicks' VaporRub. They even told us to elevate her mattress, which is hilarious when you think about trying to elevate a 6-month-old's mattress in a crib...which side goes up? How do you guarantee she stays in that spot and doesn't just roll down to the other side? Absurd. We even tried natural products like camphor menthol sprays and rubs, as well as various allergy medications her doctor prescribed. Nothing worked.

Fast forward 3 1/2 years, shortly after Maddie's 4th birthday. Fed up with our doctor's umpteenth attempt to make Maddie "better" by giving her yet another round of antibiotics, we decided it was time to ask for another opinion. Sent to ENT, we discovered that Maddie's adenoids and tonsils were enormous and needed to come out. Ta-dah! We had an answer!

(Now you may be wondering, 3 1/2 years and you never saw how big her tonsils were? We know she didn't have a way of telling you it hurt to swallow or something felt wrong, but you've never looked in her mouth once in all that time? Well, we did. But one common autistic ailment is a pronounced gag reflex. It's sensory overload. So brushing her teeth is a battle. Open up and say "ahh"? It's taken her 4 years to finally trust our family doctor enough to open up even halfway. So when the ENT doctor asked her to do the same, she clamped shut. Tight. Our child has some serious willpower. But this doctor was smart--he ordered an x-ray and voila! Gag reflex averted!)

Maddie had surgery 2 weeks ago to have both her adenoids and tonsils removed. Surgery went great, the staff and doctors were great with her, and there were virtually no speed bumps during her recovery. She was eating and drinking, sleeping well (no more snoring!), and seemed to be her normal self.

Fast forward to Day 11 (post-surgery)... looking back it's easier to pick up on little signs that something was wrong. Her snoring was back and increasing. She wouldn't take fluids, and picked at everything I gave her to eat. She was in a generally good mood but would burst into tears at any given moment. We thought she might be draining (causing the snoring), which meant she wasn't getting a good solid night's sleep (causing the breakdowns).

We were hanging out in the living room and she was playing in her play area watching a video on my phone. I heard her cry out in frustration, and thought YouTube was acting up again. But when she came around the corner she was frantically rubbing at her face and blood was pouring our of her nose. Blood. Now, I can handle blood. Vomit--that's a whole different story. But blood is a piece of cake. Unless it's coming out of someone you love. Then things get a little hairy. But Maddie is highly sensitive to our emotions, so I tried to remain as calm as I could while I cleaned her up. Surprisingly, the bleeding stopped almost immediately. Remembering what the doctor told us about possible bleeding during the healing process, I fed her a couple of popsicles to numb the area and mentioned the episode to my husband when he got home from work.

A little while later I was changing her diaper when what I saw made my heart drop--black stool. She'd ingested blood, but how much? We immediately got on the phone with the on-call doctor, who said to keep a close eye on her and if there were anymore bleeding episodes to come into the ER immediately. So we put her to bed and kissed her goodnight, mentally preparing for the stressful night that was sure to come. I decided to check on her every hour before we went to bed, and I thank the lucky stars I did because when I went to check on her after that first hour, she was struggling to breath and sounded like she was choking. I immediately woke her up, called Conor upstairs and we discovered that her mouth was full of blood.

Amazing how quickly you go from relaxing dinner and a favorite TV show to full on parental "don't panic" emergency mode. While I gathered everything we could possibly need for a night in the ER, Conor was getting Maddie dressed and ready to go. Downstairs, I had the last of our things together when I heard Maddie vomit and Conor screaming the words you never want to hear--"Call 911!" Dialing, I raced upstairs to find a scene from a horror movie. Conor and Maddie standing in a pool of blood in the hallway, and Maddie screaming in panic. My worst nightmare.

I could barely speak as I called for an ambulance. The EMTs were trying to get vitals, but they were having a hard time finding her blood pressure. When she vomited blood a second time, they gave up trying and rushed her to the hospital. The rest is a blur of constantly making sure that the doctors and nurses were aware of Maddie's autism as they poked her with needles and pinned her down so they could get vitals and an IV started. When all you want to do is hold and comfort your child, the last thing you want to do is immobilize them so they can be "tortured" (in her eyes). I kept reminding myself that what they were doing was for her own good, but at one point I had to yell for everyone to stop (Maddie was thrashing and fighting the doctor as he pinned her down and tried to look down her throat) because they were never going to get her to cooperate if she wasn't calm. By that time she had vomited blood three more times and we were done with tests and answering the same questions over and over. Turns out we didn't have to wait much longer--the on-call ENT doctor showed up and asked, "How much blood did she throw up?" I said, "It looks like someone was murdered in my house." So he quickly replied, "Then we're taking her into surgery now."

Whew. Instant relief. No more fighting the doctors. My panic level receded to a tolerable level until they start going over all the risks of surgery under the less than ideal circumstances. In response, Conor and I took turns cuddling Maddie in the hospital bed as we waited for her to be wheeled into surgery and I told him, "Tell her that you love her. Tell her everything you want to tell her. You don't want to have any regrets about the last thing you said to her." Not something any parent wants to think about when their child is only 4 years old. But we did. And we had a quiet, touching moment where it was just the three of us (much like it has always been), relying on each other and reminding me just how thankful I am for my little family.

It was close to one in the morning by the time Maddie was out of surgery. Turns out she had a blood clot in her throat from the original surgery, which caused the massive hemorrhaging. The odds were very low that a child her age would ever go through such a thing. The doctor called it bad luck. Looking back, I'm just glad with all that bad luck, everything turned out alright. We dozed in recliners next to Maddie's hospital bed for the rest of the night, but I had a hard time sleeping. So much had happened in such a short period of time, I just needed time to process my thoughts and feelings. How do you prepare for the possibility that your child might not live? How do I get all the horrifying images from that night out of my head? How does something like this happen to such a sweet little girl, who already has the deck stacked against her?

They say now about every 1 in 50 children are diagnosed as somewhere on the spectrum. 1/50... hmm, that's a 2% chance. 1-3% chance of having a great adenotonsillectomy, smooth recovery, and then violently vomiting up blood when you think you're in the clear that requires another harrowing emergency surgery and a hospital stay. Well, at least she's consistent. But seriously, what are the odds?

After sleeping through most of the night, Maddie woke up to her favorite cartoon on TV (Umizoomi), got to eat more popsicles, and even requested a doughnut when they asked her if she wanted something for breakfast. Amazing. Twelve hours before we were preparing for the worst, and there we were laughing with relief at her request. So normal. Decompression...panic level gone.

As we drove home after Maddie was discharged later that afternoon, I dreaded returning to our house, knowing the scene that was waiting for us when we got there. But we had a plan and we'd deal with it. As a couple, Conor and I are always at our best when it concerns Maddie. We lean on each other, and even though we have our moments, when it comes to our child we are a united front. No matter how horrible or scary a situation is, we will always be strong for Maddie. So bad luck be damned.

Maddie's recovery has been smooth sailing again. And the doctors reassured us that the chances of us dealing with something like that again would be "astronomical." I'm not gonna lie--we were in there the first couple of nights checking for blood in her mouth and feeling the paranoia take over. But this time the doctors were spot on. And Maddie couldn't be doing any better.