Vestiges

A few years back my mother gave me a big cardboard box containing all of the things from my childhood that she had saved. I was amazed at the stuff she kept, especially considering she had five kids, and especially considering the fact that I have not managed to save one single momento from my own kids' childhoods thus far. Well, except for Oliver's umbilical cord. And I didn't save that; Nik did. I came across it one day, amidst all of our important documents, looking all black and raisin-like in a sealed ziplock bag. I didn't know what it was but it's location alone made me wonder if it held some importance. So I called Nik into the room.

"Do you have any idea what this is?"

"That's Oliver's umbilical cord."

"Why are we saving it?"

"I'm not sure. It probably fell off one day when you were at work and I figured you might want to see it."

"That was five years ago."

"Well, there you have it!"

And the really funny thing is that after holding on to it for five years, I couldn't bring myself to throw it away. So I put it back on the shelf and there it sits.

Holding on to things is like that. But I'm not sentimental at all so only the most important keepsakes manage to stay around for any real length of time. Well, actually, the umbilical cord is pretty much it at this point.

Anyway, back to the box. My mom held on to these things for 25, 30 years and then dumped them on me. It took me a whole afternoon and a couple of hefty garbage bags, but I made my way through most of it and only a couple of items remained in the "keep" pile. My very favorite Raggedy Anne doll. One school photo from every year. And one report card.

Then I put the things away and didn't look at them again until tonight. I was looking for my university diploma and tucked away inside the leather folder containing my graduate school diploma was this one saved progress report from 1979. I was ten. On this single, saved piece of paper, my homeroom teacher, Mrs. McAleer had compiled my Strengths and Weaknesses in four subject areas: Math, Science, Social Studies and Language Arts:

Math, Strengths
Likes to participate
Volunteers in class
Does neat work

Math, Weaknesses
Lack of complete concentration
Tendency to bother others during a discussion
Lacks confidence in math basics
Tendency to do what she wants during a lesson

Science, Strengths
Average work but testing of knowledge of facts is above average

Science, Weaknesses
Daydreams in class
Misses easy questions when called upon

Social Studies, Strengths
Interested
Alert most of the time

Social Studies, Weaknesses
Acts absent-minded
Talks a lot and disturbs others
Doesn't follow directions
Raises hand to answer simple questions and give inaccurate answers
Constantly tries to go ahead on projects and gets confused
Control problem

Language Arts, Strengths
Ability to arrange events and sequence
Self-expression shows clarity and imagination
Comprehension of reading assignments is high

Language Arts, Weaknesses
Previous inability to organize is progressing.

I'm guessing I wasn't every teacher's favorite pupil. And I don't know why my mom didn't freak out about this. It certainly indicates that I was having some troubles. Maybe she was just tired -- a single mother raising five children. Or maybe she just believed in me. Maybe she saw things the teachers didn't. But what I do know is that this progress report never made a dent in my consciousness. I was never made to think I was just this bundle of strengths and weaknesses.

When I showed this to Nik tonight he laughed and said: "Yeah, that pretty much sums it up!" And it's true! I still don't have confidence in my math basics!!! I still tend to do what I want. I still daydream, I'm still absent-minded and I still have difficulty organizing (but I'm progressing. Honest.).

When I tucked my diploma back in the box where I found it, I left the progress report out. I think I'm going to hang it in a place where I can look at it more often.

It can't get any better

Today, Oliver turned six. And it was a very good day. Perfect, really.

We went grape picking.

The kids hung out in the hammock and tried their hand at a rope ladder.

We went swiming.

We made apple juice. And grape juice.

We ate cake and sang happy birthday about a zillion times.

The kids went to bed early.

And I found this ridiculously cute video of Sami from our vacation.

OK. Yeah. I'm still a little bitter. ...

Last year about this time, Oliver stopped receiving services through the school district and my sentiment was: good riddance. I remember very clearly when and where the battle lines were drawn in that particular fight and also the lesson it taught me about going with my gut. At issue was something commonly used as an aid for kids on the spectrum -- the visual schedule. Every day, a large part of the work that the in-home therapists did with Oliver revolved around getting him to use the (*%^&^!) visual schedule. Oliver, for his part, couldn't. Or wouldn't. That was the debate. Time after time I looked on as the therapists had to use full physical prompts to get Oliver to correctly use the schedule. It was awful and I regret to this day allowing it to happen in my very own home. Because, as I would say to anyone who would listen, Oliver never really had a problem with transitions so it seemed like a totally unnecessary compensation. Besides, I remember saying to our lead therapist, maybe he just doesn't WANT to do it and was simply being stubborn like any other four year old boy might if you asked them to repeatedly do something that is pretty much meaningless. That's when the therapist infamously told me: "There is nothing normal about your son. Any other four year old would have complied by now." Naturally, this is when I knew it was over between us. (It is also when I refused to allow any professional to use the word compliance in relation to my son. I don't want my kid to comply, I want him to cooperate!!) But I also remember that she went on to say that the schedule was also about sequencing and knowing what to expect. ... some people make lists, others have planners, kids with autism benefit from visual schedules, blah, blah, blah.

But, um, hey: four year olds don't make lists. Or use day planners. And my kid doesn't have a problem transitioning. I mean, yeah, he insists on putting the last piece of the puzzle in before moving on, but that's about it. Also: why can't we talk about teaching Oliver how to pick up cues from the environment so that he can figure out what is going to happen by watching what every one else is doing? Huh? Why can't we talk about that? Because that's what I'm really interested in. Let's teach him the actual skills that he needs to be successful rather than the compensations. Huh? How about that?

So, the school district sided with the therapist and I sided with Oliver and we all called it quits. I wish it had happened much sooner than it did but it took me awhile to grow a backbone.

Anyway, fast forward a year and let me tell you I never look back. Oliver takes his cues from the environment. He understands what is going on as the day unfolds. I don't prepare him more or less than I do Sami. We go on adventures -- some planned, some unplanned. Sometimes we change plans and sometimes our plans don't work out and all that is OK, too. Because that's the way life is. Oliver gets that.

Today, for example, we went to Grandma's house. There is no place and no thing on this great earth that makes Oliver more happy than to spend time at Grandma's house. Trouble was, she wasn't home. We knocked on the door. We waited a couple of minutes and I braced for some tears as I said: "Guess she isn't here. We'll have to come back."

"Come back," he replied. Then to my astonishment he turned and walked back to the car.

So, to that therapist I'd like to say: Put THAT on your schedule!

The boy has got it.

When you can't see anything it pays to listen

If you haven't had the chance to visit Switzerland, you might be surprised to know that the cows there really do wear cow bells. Take a walk in the countryside or relax on my mother-in-law's porch at dusk and the only sound you hear is the distant melody created by their movement. I find it charming but I understand that city folk, upon moving to the country, often complain about the background music. I don't know why, but for some reason the sounds of a place always stick with me as much as the visuals and the people I meet, and when I think of Switzerland the sound of cow bells in the early evening always comes to mind.

We had just one chance to get to the mountains on this trip and unfortunately the day was quite cloudy up on the mountain -- although brilliantly sunny below. We went all the way to the top anyway because the getting there is so much fun. We took an inclined train (actually, the world's steepest funicular railway) to the half-way point and then a cable car to the very top. The kids were in heaven and so was I. Walking around on the top of a very tall mountain (This one was about 1922 meters -- small by Swiss standards) surrounded by clouds and beautiful alpine flowers is quite remarkable. Occasionally the clouds would skirt around the sun giving us a breathtaking view of the world below and those glimpses of Lake Lucerne below and the distant peaks of snow covered mountains were like little treasures.


On this particular trip, as we skirted around the top of the mountain looking for the trail to the town below, I took a video of sound. You might have to turn the volume on your computer way up, but for me, this is Switzerland. And it also tells the story of those cow bells.

The Time it Takes

Why are we always in such a rush? This is a question I ask myself all the time. Why does a minute feel like forever when you are waiting for someone to make up his mind? And especially with Oliver, I wonder, why am I always in such a rush to help him? I've learned to slow things waaay, waaay down for Oliver's sake, and still, I have a long way to go. I'm impatient, I'll tell you that. But I'm also in the habit of underestimating my son. I jump in to "help him out" far too often.

What I know to be true is this: when Oliver understands what is being said, he is very likely to do exactly what you tell him. Put your shoes on. Put your plate there. Get dressed. Clean up. Get in the car. Problem solving and making inferences, however, are hard for my boy. So helping Oliver to figure out what to do is where I put most of my efforts during the day. I don't tell him what to do but rather focus on giving him the information he needs to make a decision and take action. For me the work is in the waiting; for Oliver, the work is in the processing. I think both of us are equally challenged. It's hard, I tell you!

Today, for example, we went to visit my mother who is recovering from surgery. When it was time to leave I said to Oliver: "You're the only one not wearing shoes!" Then we waited. After he put on his shoes and we walked to the car I opened the door and got Sami buckled into his seat. Oliver was dancing around the sidewalk next to the car as my Mom stood in the doorway watching. It is her habit to stand at the door and wave as we drive off. But Oliver didn't show any signs of getting in the car so I went 'round to the driver's side, got in and started the car. When the car started Oliver jumped in and got in his chair but made no move to close the door or put on his seatbelt. So I waited. And then I said, "I guess I'd better buckle up so we can go." Oliver took the hint, reached over, closed his door then fastened his seat belt. Then I mentioned that it was really hot inside the car but that the air outside was cool from the rain we'd just had. "I wonder if we could let some cool air inside?" I asked. And then I waited. And I waited some more. Oliver wasn't getting it so I hinted: "Maybe it is so hot in here because all of the windows are closed." Then I waited some more. Not a long time, mind you --seconds, really. I was watching the clock and felt the impatience rising and yet not even a minute had ticked by. And then? Oliver opened his window, I mentioned how good the fresh air felt, put it in gear and off we drove.

When I got home the phone was ringing and I rushed in to get it. On the other end was my mother wanting to know if something was wrong. "You took so long pulling out!" I thought back over the scenario and wondered how long it all took. Five minutes? Seven minutes? Surely not ten minutes. And yet, it made both of us -- my mother and I -- so uncomfortable. Funny, isn't it? I remember back to the early days when I was in such a rush to get Oliver everything he needed -- so many hours of this and that. I wish someone would have told me then the value of seven minutes spent patiently waiting.

Balance is a very good thing

One of the most incredibly wonderful things about Switzerland is the Ludotech (I hope I spelled that right), or toy lending library. Virtually every town has a Ludotech and for a small yearly membership fee you can borrow toys for your kids much like you would books at a library. Imagine how thrilled I was when we discovered that our local toy library had a small assortment of gliding bikes. I had seen these in action during our last trip to Switzerland two years ago and was amazed that even young toddlers seemed to get the hang of balancing on two wheels when they started out without the trouble of peddles. I don't know why they aren't popular in the US but I've never seen one here.

Oliver took to the thing immediately and within seconds he had figured out how to maneuver the it quite gracefully by running while astride. Within the first hour he was gliding short distances and after that we could barely get him off the thing. Here is a short video clip that was taken on the first day -- check out the smile on that boy's face!!



When we got home I was anxious to see if success on the gliding bike would translate to success on a two-wheeler with peddles. So on Tuesday I removed the training wheels from his bike and handed him over to Nik -- I'm far too nervous to be the primary parent on this one. But I didn't have to worry: without a moment of hesitation, Oliver hopped on the bike, feet to peddles and took off. So now we have balance, we have propulsion, we have steering -- but what we don't have is stopping. But we're working on it. And until then, our bicycling adventures are confined to the track with all of its soft, cushy grass on each side. But boy, the ease of this particular learning adventure feels like a small gift from heaven!

The Opposite of Bettelheim

I'm not sure who came up with the original refrigerator mother theory -- the idea that autism was caused by unloving mothers -- but according to Wikipedia, Bettelheim was instrumental in the widespread acceptance of the idea. Now, so many years later, we all scoff and are indignant at the idea. Especially us mothers. But am I the only one who looks around and wonders how we got to the other extreme end? No, our inability to love our children didn't cause them to become autistic, but maybe, just maybe, if we have the right extraordinary combination of love, diligence and resources, we can "recover" our children. And by we, I mostly mean mothers (although I know there are lots of dads out there, too). Since we began this journey three years ago, I can't tell you how many books and articles that have been given to me, the well-meaning presenter telling me how inspiring I might find it. Invariably the story involves supermom and a child that makes great progress. Am I the only one who feels the sickening weight of this pressure? Am I the only one who wonders if I couldn't be doing more and loving better? Every single day? It's not healthy, I tell you.

I'm just musing about this tonight. We're coming off of the vacation high -- a vacation where I spent a great deal of time focusing on the R of RDI (Relationship Development Intervention), a vacation where Oliver made some very important discoveries. RDI is where we hang our hat in this house, of course, and it is all about helping parents to help their kids make these discoveries. So yes, I really do believe that parents are an integral part of how kids learn. Especially so for kids on the spectrum. But you know? I don't take the credit for the discoveries that Oliver makes or for all the hard work that goes into the learning that he does everyday. I help him out as best as I can but really, all the credit goes to him. It is his brain making those connections, after all. It's all him. So why, then, do I feel the need to beat myself up during the in-between periods when the learning and growth isn't so obvious?

So I'm just curious: on one end we have Bettelheim and on the other Supermom. ... What does the middle look like?

We're Back

I had intended to post from Switzerland but can you believe that not everyone in the world has internet access? Can you believe, in fact, that I could check my e-mail just twice in 26 days? The place where my husband grew up was given the honorary title of "City" because of its historical relevance, not its size. Last year the little "City" celebrated its 800th year. No, that's not a typo -- Eight Hundred years! So I guess the 1800 citizens think "So what if we don't have an internet cafe!" And who am I to argue?

Oliver was a superstar on this trip. For the first time, he began getting my attention and showing me what he found interesting and making sure I saw him doing things that made him proud. The first time it happened, when I let myself be led to the rain barrel and his hand pulled my neck down close to the water's surface so that I could see our reflection, it took me a moment to take in the enormity of what had just happened and my heart nearly burst. He also started routinely calling out my name to get my attention to ask for the things he wanted. He also learned to ride a two wheel bike without training wheels. He was a tireless hiker, an enthusiastic adventurer, a singer, a swimmer, and a good sleeper. It was all so wonderful, in fact, that for the last week of our vacation I began every conversation with Nik by saying: "If we moved to Switzerland. ..." I know, it would be different if we lived there, but the last three and a half weeks were like magic for me. I feel renewed and you can't blame a gal for wanting to hold onto that.

Nik and I also took Tango lessons!!! We were miserably awful. Truly. We were the only couple to keep colliding with other pairs on the dance floor. It was like bumper cars. But it was fun and I haven't laughed so hard in ages. We went out walking nearly every evening, usually ending in some small restaurant for a glass of wine and lovely conversation that didn't have anything to do with kids or autism!!! And nearly everyday we managed to steal away for a bike ride along the Rhine, just the two of us.

It wasn't ALL good, of course. Try as I might, I just could not resist all the chocolate and cakes that were passed my way. By about day ten, I abandoned any notion of resisting at all and gave in completely. Also, Sami became possessed by some evil spirit that must have been lurking around one of those castles we visited. Or maybe that's just what happens when a kid eats his weight in chocolate, ice cream and cake every day. His behavior was mostly atrocious. (Although everyone agreed that he was cute enough to get away with it. I'm sure they said other things but that's what was mostly translated to me. His mother.) On one particularly bad evening, I pulled him aside and hissed at him that he had better shape up and he actually said to me: "I don't have to listen to you because you smell bad. You're a pig. I'm going to push you down in the pig hole." Those were his exact words. I know it because they are forever etched in my mind. I didn't know whether to laugh or cry. I mean: Where did he learn to say things like that? We don't have a TV so he didn't pick it up that way and I'm usually with him when he plays with friends and I've never heard any other mother's child talk that way.

Well, not to end on a sour note, I will leave you with a few photos -- with more to come as I digest and download:
Oliver getting comfortable at the airport before we boarded the plane.














Rooftops of the old city. Taken from the remains of the last castle tower left standing. That's the Rhine river there and Germany on the other side.












The view from the top of the castle. Nik's childhood home on a small farm is just outside the frame of the picture.













My boys heading towards the gates of the old city to the farmlands on the other side.