Satisfaction Survey -- looking for input

I was enormously happy -- thrilled, in fact -- with the level of care that we received at U.Va. this week when Oliver had his little quarter-ectomy (confused? See previous post). Every single staff member that we interacted with was professional, helpful and caring. I loved that everyone, the surgeons, the nurses, the medics and the orderlies, all addressed Oliver and included him in the conversations about what was happening to him. I was relieved that every staff member noted Oliver's special challenges and asked what they could do to make it easier for us. I knew that Oliver would have difficulty accepting an IV and so they made every effort to avoid making him get one until the last possible moment and then they discussed all of our options for making it as least traumatic for him as it could be.

When it became clear that we would be discharged soon, I started to think of how I might communicate my thankfulness to the staff and was happy to learn that a satisfaction survey would be mailed to me. The discharging attendant told me that the feedback they get from these surveys is important to them and it helps them to make positive changes in their procedures. Alright, I thought! Rock on. I hope I never have to go back there but I'm happy to give them my input in case I do.

So, I'm soliciting thoughts on the best way to express the one, tiny, little complaint that I have.

When we were first admitted to the pediatrics emergency room the nurse, upon learning that Oliver had autism, asked me: "So, how severe is his autism?"

This is a question that I often struggle to answer because, honestly, I think it has little meaning. And in this case I couldn't grasp what relevancy it might have.

So I looked at her with my mouth open and totally at a loss, stammering: "Um, well, he has trouble communicating. ... I'm not sure I understand your question. ..."

"Oh, you know, they have those scales," she said drawing the shape of an inclined plane in the air with her finger, "where does he fall?"

So I asked: "What exactly do you want to know?" I wasn't being pissy, I just didn't get what kind of information would be helpful for me to share with her that might have relevance to what was about to unfold."

"Well, how cooperative can we expect him to be?"

OH!! OK, now it is all clear.

"He is really cooperative and has been handling everything great. I think it helps for him to have me with him but otherwise I'm so pleased with how he is doing. He's been very cooperative. "

So here's the thing: severity of a person's autism has no bearing on how well that person will deal with pretty much anything. Every single person on the spectrum has challenges that are unique to that person. A better way of asking the question might have been: What special challenges do you think we should be aware of with your child in this situation?" That would leave the door open to talking about sensory challenges, communication limitations, stranger anxiety, trouble with transitions, etc. And it would definitely give them more useful information than any number on an autism rating scale would provide.

I'm looking forward to filling out the survey and sharing this with the staff because I think it is a small but vitally important point to make. And I'd like to ask: If you had the same experience and were filling out the survey is there anything that you would add to my statement above?

A quarter lighter and not an ounce of bear heavier.

Monday started out like any other day and ended 48 hours later unlike any I can remember.

It began with a small group of my friends and their children who gathered in my kitchen to participate in a chemistry experiment that, if we were lucky, would yield Mozzarella cheese. As we heated four gallons of milk to 90 degrees I counted small heads and realized that one was missing. Oliver was quiet upstairs and with a bit of apprehension I climbed the stairs to check on him. One too many apples had caused a bit of intestinal distress and, well, there was some kind of mess to clean up. I gave Oliver a quick bath, closed the door on the smelliest room and brought him downstairs to join the cheese-making fray.

Later, after we had all eaten our share of fresh, yummy cheese and the last of our friends bid adieu, I loaded Oliver and Sami in the car to rent a carpet cleaner. We also stopped by a local shop and bought a new rabbit to add to our fold. 10 week old Digger would join old and crotchety, not-much-fun Bo-Bo in our rabbit hutch.

Once home again, I told the kids to play in their room with Digger while I set to work cleaning the carpet in the other room. Mid-way through my work Sami tugged on my elbow to tell me that Oliver had another accident in their room. Sighing heavily I stripped him down, put him in the bathtub and set to work cleaning my second carpet of the day, telling Sami to play with Digger in RT's room. While I was busy, Oliver finished his bath and went to play in bedroom A again and -- you guessed it -- had another, explosive, accident. I put him in the bathtub for the second time and set to work again on carpet A, only to be interrupted shortly thereafter by Sami telling me this time that Digger had pooped all over RT's room!!! Oh well, I thought: might as well clean ALL the carpets.

When I was finally finished I plopped down in my desk chair thinking to myself: well, at least I had the carpet cleaner. I had put in a full day's work in just a few hours and was, well, pooped! As I thought this to myself I heard first the sound of Oliver gleefully jumping on his bed and then the distinct sound of something hard clinking against his teeth. A coin? A marble? I quickly ran through the probable list, inwardly groaning that I don't get a moment of peace, but sat for another second reminding myself to have patience. I'm working on patience.

In that final second, as I sat there, Oliver began choking on whatever it was in his mouth. I was almost to his door when he bolted out, ran past me and in to the bathroom with a wild look in his eye. By the time I stood next to him he was wheezing and struggling to breathe. Then, a breath, followed by gagging and retching. I guided him to my desk chair then and watched for signs that would indicate what I should do next. At this point he was breathing fine but acting somewhat subdued. I called our pediatrician and the nurse recommended that we head to the emergency room.

Kids swallow stuff all the time, right? Probably he would just poop it out, whatever it was. Going to the ER would just reassure me that everything was OK and make me feel like an alarmist, right? Wrong. The x-ray showed a very obvious round object about the size of oh, a quarter, lodged in his esophagus just behind his heart. Oliver, they told me, would need surgery. What? Surgery? Are you kidding me? I just couldn't get over the enormity of what happened in the time time it took me exhale a tired sigh.

A few phone calls to the hospital staff yielded more news: Oliver would need to be transferred by ambulance to a larger hospital, over an hour away, where they had a pediatric surgical staff.

We were finally admitted to a room at U.Va. a little before midnight and Oliver promptly fell fast asleep. The next morning, another series of x-rays told us that the object had not moved and that we would have to follow through with the surgical procedure.

Around noon, a quarter was retrieved from Oliver's irritated esophagus, which was promptly soothed by 7 popsicles in rapid succession.

On the way home from the hospital we were involved in a three car, one 200lb bear, accident. I'll save that story for another day but I'm just throwing it in here now to reinforce my claim that this was quite a day. ...

The good news is that Oliver was incredible. He was a superstar. He handled the whole thing, from start to finish, without a bit of fuss. He was cooperative, calm and didn't complain one time. He was poked, prodded, pinched and shuffled from place to place and he handled it all better than his mother, who was bitter tired and a nervous wreck. A year ago, or two, and this whole episode would have been unbearable, the stress 100 times more intense. But Oliver surprised me with his resiliency and maturity. And although the circumstances weren't a bit pleasurable, he was a pleasure to behold.

I want to end this post by saying something about how this experience made me realize how different life with Oliver is today compared to how I imagined it was going to be three years ago when we just struggled to get through each day. I can't quite think of how to express the huge difference between the future of my imagination and the reality of my boy at the present. But as I am at home again, settling back into our routines with a boy who is one quarter lighter, I know that anything is possible. The future is bright and completely unwritten and I, for one, can't wait to see how it all turns out.

In the meantime, all quarters, silver dollars, marbles and the like are neatly stashed out of reach.

Living on the edge

Spend enough time with Oliver and you will come to find out that the boy likes to live life on the edge. Literally. If we are walking down a sidewalk he will position himself so that he can touch whatever wall or fence is adjacent. In the woods he will walk with one foot on the path, one foot in the forest. If there is a ledge or berm or line, he will walk as close to it as possible. I've known this about him for years but while we were on vacation I began really paying attention and I learned something new about how Oliver navigates life.

Going places with Oliver is relatively easy these days. He smiles easily, seems to understand so much more of the world around him and is just, generally, an easy-going kid. But he still needs quite a lot of help and support because he can sometimes be impulsive and often will do things that might be considered inappropriate or that make me uncomfortable. So I am hyper-vigilant when we are out in public and I rarely let him stray out of my arm's reach so that I can reign him in if necessary. One thing, for example, that has often perplexed me and caused some stress is that Oliver is very likely to walk straight into other people. For instance, if we are walking down a street or an aisle at the supermarket and someone is advancing towards us from another direction, Oliver will visibly change course so that it would seem he is trying to collide with the other person. It stresses me out and confuses the other person -- why is this kid banging into me when the whole street is otherwise empty?

In Switzerland there are many streets closed to automobile traffic and lined with outdoor cafes, people sitting close-by to foot traffic, sipping their coffees. We spent a lot of time walking these streets and I began to notice a pattern. No matter how often I re-directed Oliver, he would always try to change course and walk straight to these clusters of unsuspecting people or towards the nearest pedestrian coming our way. It frazzled my nerves. I wanted to give him the freedom to walk independently but often found that it was easier to take his hand. When I had his hand he walked comfortably beside me.

But after taking so many pictures of Oliver keeping to the outermost edge of the environment, it suddenly dawned on me that he probably wasn't trying to collide with those people at all, he was trying to anchor himself by aiming towards the next closest thing in a moving world.

I tested my little hypothesis a few times to see what would happen if I didn't re-direct him and sure enough, he simply brushed by the advancing person and continued on his merry way down the street. I would love to simply be able to relax now that I've figured this out -- and wow! It feels like such an important insight -- but I can't let him go around letting him constantly brushing against people and things all the time. Even in the woods this was a problem: the paths that we hiked regularly were all crowded by stinging nettles -- I've never seen so many! So every time I saw Oliver veering towards the side of the path (constantly) I had to remind him to stick to the middle. It was frustrating for both of us.

Oliver is almost seven and he's been doing this for almost as long as I can remember. Finally figuring this out -- putting two and two together -- feels a little bittersweet. I can't believe it has taken me so long!!! It also makes me wonder how different Oliver's perceptions of space must be from my own and what I can do to help him feel more comfortable navigating the world.

Ideas anyone?

Can you tell what all of these pictures have in common?

Gosh, I have about a million things I want to write about. Rather than posting one long digest post, I'm hoping to sit down and write a bit every evening and get back in the habit.

First, I wanted to follow up on my last post from vacation. I think sometimes I have to really take my emotions out, turn them over a bit in the sunlight and examine them before I can own them. That is the way it was with the melancholy thing. I'm still not sure where it came from, exactly, except to say that it can be hard to see Oliver through the eyes of people who see him for only a few days each year. I tend to focus on progress, where the noticeable thing, to a person lacking context, might be a deficit. You'd think I would be used to it by now. But I never will be used to seeing that certain look cross someone's face as they observe my boy. I never will be.

BUT, having said that, I also have to tell you how completely and totally awesome my kids were on this vacation. Oliver, a boy of motion, is at his best when we are traveling -- no kidding! Stand in line for a half hour here, 40 minutes there? No problem. Follow Mom and Dad through a crowded airport carrying his brother's banjo on his back? Great! Sit contentedly through a 9 hour plane ride? Sure!! In fact, both kids in this way are true children of their parents: they are real adventurers at heart.

(Just one word of caution for any other parents of kids out there who think taking play doh on the airplane is a great way to occupy her sensory seeking kid. To airport security play doh = plastic explosives. It is a banned substance!!! Who would have thunk it? However, after a little begging on my part they let us keep one container for the trip. Apparently that desperate look in my eye did the trick.)

Also, while in Switzerland they were completely (mostly) wonderful. Sami had only a few flare-ups of temper but not anything like last year. Not once did he call me a smelly pig :-) Oliver tolerated lots of visits with family and friends. Both kids ate in inordinate amount of chocolate and ice cream, and they voluntarily cleared the table after every meal. We hiked every day. Oliver learned how to operate a hand brake on a borrowed scooter and Sami learned to balance on two wheels using a gliding bike. We went swimming in the Rhine. We rode the train. They rode a zip-line that nearly gave me a heart-attack. ... Oliver didn't sleep all that well but otherwise seemed perfectly at ease.

There's lots of other things to share, of course, but I'll leave you with a few photos and a short video of the zip line adventure.

Virtual Book Tour: Frankie the Walk 'N Roll Dog

Welcome to today's stop on the Virtual Book Tour for Barbara Gail Techel’s story of love and triumph, Frankie the Walk ‘n Roll Dog!

Frankie the Walk ‘n Roll Dog tells the tale of a dachshund who is adopted early in life by Gail and her husband. He has a good life with his adopted "mother", seeing the world, or at least Elkhart Lake, from the basket on the front of Gail's bike. But soon life changes dramatically in Frankie's house: a spinal cord injury leaves her hind legs paralyzed leaving her unable to walk. Operations, physical therapy and a lot of love and persistence follow as Frankie heals from his injury but is still unable to walk. Gail, not one to give up easily, finds a way to help Frankie to have the best possible quality of life. A specially made wheelchair gives Frankie the mobility he needs to continue seeing the world with Gail.

Together, Frankie and Gail have become a registered therapy dog team, visiting the elderly and hospital and hospice patients.

Frankie the Walk ‘n Roll Dog, is a beautifully illustrated children's book that will appeal to people of all ages.

OK, now for the backstory of this review. I have to admit that when I was asked to write a post about this book for the Virtual Tour a few thoughts crossed my mind. Like: A Dog book? A Dog in a wheelchair book? But I was also a bit curious, so sure, I said: sign me up. When the book arrived I barely had time to glance at the cover before shoving it into my suitcase to read while on vacation. And there the book remained, guiltily reminding me of my obligation every time I opened my suitcase to throw in another pound of souvenir chocolate. Finally, on the day before we were to depart for home I sat down to read the book.

What I found between the pages of Frankie The Walk 'n Roll Dog, was a very touching love story. It reminded me that there is no possible way to place a value on love. Love inspires us to create possibilities where others might see only limitations. Love inspires us to keep on moving forward even when our very own legs cannot carry us any further. And there are as many varieties of love in this world as their are varieties of people. It is what makes life so interesting.

About Barbara: She is the author of the multi-award winning Frankie, the Walk 'N roll Dog. She wrote the children's book to give hope and inspiration to all who face challenges. Her lifetime love of animals led her to realize that Frankie's paralysis was an opportunity to spread a positive message. Frankie the Walk ‘n Roll Dog, her first children’s book, was awarded the 2008 National Best Book Award (children’s picture book soft cover) by USA Book News, the Merial Human-Animal Bond Award by Dog Writer’s Association of America, and the Editor’s Choice Award by Allbooks Review. It was also a finalist in the 2008 Indie Excellence Awards. Frankie has been inducted into the 2009 Wisconsin Pet Hall of Fame.

Notes from the attic

For some reason I got a yen to hear some Leonard Cohen a few weeks ago and during a spare moment downloaded The Essential Leonard Cohen. I used to have quite a collection of his music on cassette tape but I left all of that in an act of catharsis at the Salvation Army before one big move or another. I’m a real sucker for some of his earlier stuff: Suzanne, So Long Marianne, Bird on a Wire and of course, my favorite, the painfully melancholy Famous Blue Raincoat. Cohen’s music transports me to the soul of my early twenties when I was deeply involved in an angst-filled love affair with an older man. An artist no less. Our affair was doomed but painfully exquisite. And perfectly suited for a Leonard Cohen soundtrack. But life has changed a bit for me since those days. I don’t have a lot of time for free listening and when I do, Leo rarely suits the mood.

Fast forward a couple of weeks and you’ll find me listening to Cohen again. I’m on vacation in an unbearably beautiful spot but my mood is undeniably melancholy. The setting is ripe. Now that the children are older we’ve graduated again to the attic apartment in the old farm house owned by my mother-in-law. Normally a boarder lives in this small garret apartment but he has decamped to Southern France for a few months and so the apartment is ours for three weeks. The boarder is an intriguing fellow. In his mid-fifties, he has no regular job and by all accounts never has. He lives, as far as we can tell, on a small government pension. He owns next to nothing and his asceticism is evident in the things he has left behind: a small hot plate and tiny refrigerator, a cupboard pantry filled with the bare essentials: sugar, red table wine, instant coffee, saran wrap. His pillow and an extra set of shoes are covered in the corner of the outer room by a threadbare blanket. A sheet, roll of paper towels and a pair of scissors sit on a counter and a bare light bulb hangs above what must serve as his table but now holds my laptop -- a device that seems wholly out of place. The heavy wooden eaves and insulation hang above my head, moonlight streaming in from the skylight. A clothesline with sentential pins hang from the rafters in the far corner. A poster from the Spaghetti Western, Once Upon A Time in The West, hangs on one wall and a Political Map of the World hangs on another. The rest of his life is in whatever luggage he took with him to the South of France. I met Vernie on our last trip to Switzerland. He was quiet and unassuming with a gentle, self-assured smile. He helped my Mother-in-law with the weeding and yard work, he had extravagant patience with my children and he spoke English, German, Italian and French with equal fluency. He is the kind of person I always want to know more about because of the simple peace that he exudes.

I don’t know why I’m struck by this melancholy now when I finally have space to breathe; to just be. Such a change it is from the last few months. I don’t know why but I feel lost. If I go back to those earlier Cohen days I remember that the painfully exquisite feelings came from wanting intensely to inhabit a being that could capture the love of this person that had captured me so thoroughly. But a person cannot become a decade older, wiser and more confident just by wishing it so. And so it is for me with parenthood I suppose. Try as I might I have not become the person I want to be, the mother who accepts her role and her children in the simplicity of the moment. I want. If only. Why. I cannot seem to find the asceticism that makes living in the moment possible. I’m curious about Vernie because he apparently has what I lack: the ability to appreciate the gifts that come from the simplest of acts of living.

I am now a decade (or so) older than I was when Cohen was on regular rotation in my cassette player and hopefully I am also wiser and certainly more confident. But those traits only came by way of living. I had to earn them.

The greatest gift I can give my children is to accept them wholly for who they are, to not want and wish for them to be otherwise, even as I rejoice as they continue to learn and grow each day. I know this and yet the melancholy persists. I want. If only. Why. Is this part of the process? Is this the way I have to earn the next decade of wisdom?

Probably.

I’m not sure.

But Leo? I think you’ve served your purpose. And you can take this melancholy with you!

Dear Blog,

I haven't forgotten about you. Really. You're on my mind every night when my cursor briefly hovers over your dashboard bookmark. I feel guilty momentarily when I don't stop by your url and instead visit gmail or facebook or bloglines. But I've got a problem with you and I might as well confess it right now. You are high maintenance. It's true. I love you and you've given me a lot over the years -- emotional support, friendship, a sounding board, and good advice (just to name a few). But sometimes I just don't have the emotional energy that you require; that you deserve. You see, with gmail I can be straight-to-the-point. With facebook I can be pithy and sarcastic, short and sweet. And best of all, with bloglines I can be totally a consumer. But you, my blog, you require energy, thought, introspection, complete sentences and well-formed paragraphs. Let's also not forget the attention to grammar AND spelling that you demand. And all that is OK, because the trade-offs are worth it. You've been there for me when I needed you and I feel lucky to have you.

I just wanted to let you know that even though I haven't been by much lately, I still think of you. Like today, for instance, when I went shopping for a digital camera I thought about how great it would be to share more photos with you. And the other day when Oliver cut his finger with the potato peeler and then tolerated a band-aid for the rest of the day as if it were no big deal, I wanted to share it with you because, hey, last time he had a cut our house looked like scene from Evil Dead.

I'm almost finished with my certification program. You know, the one that has me working almost every evening. The one that causes me extreme deadline anxiety! We're leaving for Switzerland at the end of the month and by then I hope to be finished. And then, Then!! I'm all yours. Well, after I return fat and happy from chez Mother-in-Law, home of the perpetually filled ice-cream freezer and chocolate cupboard. I'll take a picture with my new digital camera and share it with you. You won't believe it.

If there is time before I leave I'll drop you a little note or two and tell you about Bo Bo the Rabbit. I'll complain to you a little bit about why I can never do anything part-way and why I should have thought twice before picking up anything written by Michael Pollen. I'll tell you about a grant we received from a national foundation that will pay for Oliver's speech therapy. And I'll tell you about our amazing adopted tribe.

But before I leave I will most definitely sit down for at least a couple of minutes and tell you about the beautiful, perfect, amazing tie dye shirt that we received from John, Sam and Kal over at AutismTwins, and I will ask for your help in recruiting kids who would like to keep the color flowing (feel free to get started on this immediately).

So.

Are we better now? Because I feel better. You're such a good listener, blog.

Gotta run, now though.

Be back soon.