And we're off!!!

Back when Oliver was first diagnosed at the age of three, back when we had teams of people regularly meeting at our house to discuss what could, should, be done to help him, someone thought to ask me what I would most like to address through therapy. I remember the surprised, not-quite-understanding-if-they-heard-me-right looks on their faces when I told them that I would really, really, really like for Oliver to learn to ride a bike. Ok, ok, he had barely any language then and their tests and ratings and scores and whatever showed all kinds of deficits and here I was talking about bike riding.

But here's the thing: life as we had known it was gone. Therapists, schedules, food choices, friends, relatives, terminology, language, relationships, expectations. .... all of it. Changed. And the future? Our hopes and dreams for what our life might hold? For what Oliver's life might hold? Changed, too. Or at least under revision.

So asking the therapists to help us teach Oliver to pedal a bicycle wasn't as frivolous as it might sound. Prior to having children, Nik and I did quite a bit of cycling. Not only did we both do a lot of our commuting (I even did laundry and grocery shopping by bike) on two wheels, but we logged countless miles on the weekends exploring our county together. You could even find me on my bicycle around town in the week before I gave birth to Oliver in late August. It was natural for us to dream of the day when Oliver might join us on two wheels.

The therapists gently told me that we could work on the pedaling thing during "down time" and I got the message that they thought maybe I should re-examine my priorities. Still, every day for months we worked on helping Oliver understand how to coordinate his body with his little tryke. Eventually he got it and later balanced on two wheels easier than we expected. Our biggest hurdle was teaching him how to use the brakes. After nearly a year of trying to help him understand how he might back-pedal to slow or stop, we decided to change tactics. A few weeks ago, with a generous gift from his God parents, we bought Oliver a beautiful green and black Trek with a hand brake. He is slowly, slowly getting the hang of squeezing the brakes, with frequent reminders from us. (He still prefers to drag his feet -- we've now gone through two pairs of shoes!)

Buying Oliver a larger bike has had one unintended but wonderfully anticipated consequence: larger wheels = speed, and Nik and I, who are both -- ahem -- not as young as we used to be, can no longer keep up with him on foot. The day when we ride together as a family has finally arrived. It feels like a landmark. An accomplishment that makes my heart soar. There are no words for it.

There are some tricks to the whole thing, of course. We choose our routes and times to avoid traffic. Nik rides next to Oliver, always careful to keep him within arm's reach and to his right. The sight of them riding together makes me think that Nik would have made a good cowboy the way he corrals his spirited two-wheeled boy.

We've been on several five-milers over the past week or so and each morning when Oliver wakes up he searches for his helmet and declares: "bike ride!!" It makes me deliriously happy and reminds me again that there is simply no telling how far this boy will go.

Summer

Bo-Bo and Digger join the family

I got it into my head earlier this year that what we really needed was a rabbit hutch with a worm composting pit underneath it for our garden. Sounds like a really homeschooly kind of thing to do, don't you think? Mostly it was for me, but I knew the kids would go along with it too. And what do you know? Nik didn't even object -- normally he is the one who puts the kibosh on my random, out-there, ideas. But soon after he gave his thumbs up, (like the next day because I was worried he would come to his senses) we built a de-lux rabbit hutch in the back yard. The only real hitch to the plan was that we didn't have a rabbit. Or worms. I went to the SPCA but they would not let me adopt since it turns out they consider rabbits more of an indoor kind of pet. As soon as I told the woman we had an outdoor hutch she literally grabbed the application form out of my hands. Pet stores wanted $50 a piece for rabbits that were "guaranteed for three weeks." So that was out, too. I had about as much luck finding worms. I made about 10 phone calls to every sort of environmental and agricultural service I could think of. Strangely enough, if I wanted to keep the worms indoors then I wouldn't have this problem. Apparently worms are also indoor pets.

Then, as luck would have it, a neighbor told me that another neighbor wanted to get rid of her rabbit. Ah ha! A lead!!! I quick visit revealed a nice brown rabbit in an outdoor hutch. I asked the woman why she wanted to get rid of the rabbit and she answered vaguely: Oh, I want to spend more time on the garden. It didn't occur to me to wonder about that until much later. The rabbit -- Bo-Bo, put up quiet a fight as the husband and wife both tried to grab him so they could put him in our box. When the woman finally pulled him out she quickly thrust him into the box and shut the lid, as she was doing so, I gasped to see that her arm was covered in blood.

"Your arm! It's bleeding!!"

"Oh that? Um, it was bleeding." she told me, as if to imply that she had just been walking around that way before we got there. As if this wasn't a rabbit induced injury.

But anyway, I had my rabbit and the kids were thrilled. All the way home I heard the guy thumping loudly against the walls of the cardboard box. It sounded a bit menacing. Aren't rabbits meant to be docile? I should have thought about turning the car around. But oh well, I had my rabbit. And he was free!!

Unfortunately, as you might have guessed, Bo-Bo isn't the friendliest of rabbits. In fact, if rabbits could growl I'm sure this one would. But he is old after all. And he does poop a lot so I'm getting what I want from him. ... still, I started wondering if I shouldn't have been more selective when a friend told me that she used to have a rabbit that her kids could hold.

Not long after that I happened to be at a local hardware and lo and behold, I found that they were selling baby rabbits. Timidly I reached in to pick one up -- my only experience so far had been growling, scratching Bo-Bo. But this little guy just practically jumped into my hand then curled up in a ball and went to sleep as I pet him. Ohhh, this is what we had been missing.

So you guessed it, the new guy came home with us. But there was only one problem: I was afraid to put this dear, sweet, baby in the same hutch as Bo-Bo. The last thing I wanted was for my kids to witness violent scenes from the animal kingdom. So I let the new guy: Digger, stay inside. We put him in his box at night and whenever we had to go out but otherwise he had the run of the place. The kids were beside themselves with Joy.

The only problem?

Hop poop, Hop poop, Hop poop. That's pretty much all rabbits do. I spent a LOT of time picking up little rabbit turds. Bo-Bo was beginning to look a lot better. Digger had to go.

Armed with a water squirter, we gently introduced Digger to his new companion. But here's the other thing I learned about Bo-Bo: he is, um, rather affectionate if you have long ears and fur. It also didn't matter to Bo-Bo that Digger showed no interest in returning his affections. It also didn't matter which end Bo-Bo tried to, um, investigate. He was just really happy to see another rabbit, let's just put it that way. Digger seemed unfazed and unhurt. Sami and Oliver seemed utterly fascinated. I was just happy there was no bloodshed.

Next up: mail order worms!!

Get the boy some chicken!

Did I tell you that we got a new speech therapist and that I love her so much that if she wasn't married I'd ask her to move in with us? She is so positive and optimistic and has such a wonderful way with Oliver that I would give her RT's room in a heartbeat just so I could get my dose of good cheer and warm optimism every morning on my way downstairs for coffee. RT would probably put up a fight because that would me that he would have to bunk with the munchkins but Lara would just smile at him a few times and then, I feel confident, he wouldn't mind so much. Besides, she is very pretty.

How, you might ask, can we afford to send Oliver to a private speech therapist twice a week? Well, I'm glad you asked because I still can't believe my good fortune. For some reason I very happily came across the website for the United Healthcare Children's Foundation and decided to apply for a grant on Oliver's behalf. Within a month we were approved and busy rearranging our schedule so that I could take Oliver half-way across town twice a week for forty-five minutes. If you have a modest income and a medical need for your child that is only partially covered by insurance -- or in our case -- not covered at all, then I urge you to look at the website to determine if you might be able to apply for a grant. It was easy as pie. Honest.

Anyway, back to Lara. She is the very first adult (outside of family) that has successfully built a report with Oliver and it took her a relatively short amount of time. She fully embraces the total communication approach that we use with RDI and she somehow knows when to challenge Oliver and when to give him a bit of time and space. She is also really good at listening to my input and incorporating that into her work with with him.

Imagine how grateful I am that Oliver not only jumps out of the car but happily takes his communication book with him, swings open the door to the office and then rushes happily back to the therapy room without a second look back at me. I can hear small snippets of sound coming from behind the closed door -- mostly because Oliver can be quite loud -- but I rarely, rarely, hear sounds of distress.

There was a time, not long ago, when Oliver reacted with quite a bit of anxiety whenever I put him in any kind of therapeutic situation. It was hard for me to see any good coming from any activity that always resulted in such acute distress for my boy. Taking Oliver out of school, stopping speech therapy, these were not decisions that we came to easily. I don't worry about it everyday like I used to, but on occasion I am reminded that our path is pretty unconventional and, well, I worry about that now and then.

But twice a week when Oliver and Lara come out of the therapy room all full of smiles and bounces, I feel, in my heart that we did the right thing. The right thing for us was to wait, to not try and do everything right now, to build self-confidence, believing, knowing, that for Oliver this was the key to helping him accept greater challenges down the road. When Lara says to me with a little bit of genuine surprise in her voice: "We had another great day!" and then lists all of his accomplishments during their session we both trade little hopeful, surprised smiles because we are both thinking the same thing: this kid is really taking off!! He is interested, engaged, focused and. ... using real language to communicate.

Tonight at dinner, we slid into our booth at the Mediterranean restaurant and Oliver promptly began a little demanding mantra: "chicken, chicken, chicken, chicken!" Playfully I smiled and asked with a bit of surprise in my voice, "What?", to which he responded: "I want to have some chicken!" with a tone of voice that said I wasn't the brightest bulb in the pack! I craned my head to see if the waitress was nearby because you'd better believe I was suddently mighty motivated to get the boy some chicken! Luckily she was on her way so I didn't have to steal any from our neighbor's table! And later, when we went to the pet store to find a rabbit feeder he grabbed Nik's hand and said: "I need to use potty." We all came home a bit giddy.

I hesitate to say that we are on the road to becoming completely verbal. I suspect that speech will always be a struggle for my boy. We'll take it one step at a time, finding our way together. What I am most excited about is his new willingness to experience and participate in so many things. The scope of what is possible is growing wider and wider.

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?