What's in a name?

I'd like to solicit some opinions on the matter of my dear second-born son's name.

His full name is Samuel. It took us some time to arrive at this decision three days after he himself had arrived. The actual decision had something to do with a dead fish but I'll spare you the details.

Sam. I liked it from the start, such a strong and solid-sounding name. But the trouble with the name is in the way most Americans pronounce it -- so that it rhymes with Man or Ran. To my dear Swiss German husband it sounds like fingernails on the chalkboard and he exaggerates the worst American twang to get the point across anytime I let go of my vowels.

So here's the thing: Nik has taken to referring to our little strong, solid man as Sami -- complete with the umlaut over the A (which I can't figure out how to do in Blogger), which he hopes will encourage people to use the short A sound. But I am not one who typically goes in for stylizing names with all kinds of extra i's and y's and e's and this is dangerously close.

So what do you think? Does it work? Is it a little too weird? Or is it weird in a cool way? How will it change his life to go through it as a Sami rather than a Sammy or a Sam?

Any thoughts?

Awed. Or, A New Kind of Retail Therapy

Isn't it funny how life presents us with opportunities for appreciation and gratitude when we most need it?

I took the kids shopping on Friday. I hadn't planned to and I didn't need anything in particular but they were driving me crazy, I was driving them crazy and we all needed to get out of the house. Also, I'm learning that Oliver feels the most at peace when he is in motion. A walk or swim are the best but a ride in the car or on an escalator, cart or wagon are a close second.

I got the kids into the car without any clear destination in mind but quickly settled on Big Lots because there is always something interesting to look at and because they carry our favorite brand of sparkling apple cider that is packaged with a cork stopper that pops like champagne and that the kids like to drink out of fancy wine glasses that they clink together to "cheer" each other. There is no better way to make something special out of an ordinary afternoon.

My strategy regarding outings is to always be prepared to call it a day at anytime -- sometimes even before arriving at our destination, or after as little as 30 seconds or three minutes. Of course that rarely happens anymore but I had never taken Oliver to Big Lots and didn't really know what to expect. If you have never been to a Big Lots, it has a much more claustrophobic atmosphere to it than say, Target, which is a place that Oliver generally likes. I also wondered how crowded the place would be in the middle of the afternoon on a Friday. Tight spaces plus a lot of people might be enough for us to beat a hasty retreat.

We have been putting a lot of emphasis lately on having Oliver help us with things, with trying to get him to take an equal role in activities throughout the day. It is surprising how willing we have all been to assume that Oliver couldn't or wouldn't participant in everyday activities, whereas Sammy isn't happy unless he IS made a part of whatever we are doing. So even though I didn't arrive at the store with any particular objectives in mind, I did make choices that I might not have otherwise. For example, we chose our shopping cart outside the building and then had to negotiate the front doors with the cart. Without a word or a prompt, Oliver struggled to hold the door open as I got first the cart and then Sammy through the doorway. So I started out right away being totally impressed with my little guy. The trip was already a success and we were barely through the front door.

The carts at there are too small for riding in and Sammy had already claimed the riding spot on the front, so I let Oliver drive (with some assistance from me). The isles were pretty close together so moving the cart from place to place was actually not that easy but he stuck with it and helped me -- really helped -- with it. At one point I couldn't decide between two brands of dish soap and, on a whim, held them out for Oliver to choose. After considering it for a brief moment he selected the green, slightly taller bottle and, pleased with himself, chucked it into the cart. Oliver has a very difficult time making choices, which I think is closely tied to his very genuine lack of self-awareness, so I was tickled that he actually chose one variety over another and made a mental note to myself to offer more opportunities like that to him.

Sometimes when I paused to look at something Oliver wandered up and down the isle. A year ago -- no, three months ago -- he would have taken off running if I didn't maintain physical contact with him. But now I simply have to remind him to stay with me. The store was quiet enough that I even tested him a bit by starting to walk away when he had wandered to the opposite end of the isle. Both times I turned the corner and waited with my breath held only to exhale a moment later when he rounded the isle with an anxious look on his face and he slid his hand into mine.

After loading 8 bottles of apple cider, one green bottle of dish soap, and one each Dora and Diego folding baskets into the cart we made our way to the check out counter. If the trip was going to go bad this is where it would be. Oliver laid claim to the Dora basket and was holding it in one hand while still helping me guide the cart with the other. But really, ALL the things in the cart were now, in Oliver's mind, ours. Taking things out of the cart and loading them on a conveyor belt is very confusing and upsetting to him and the checkout line has been the scene of many, well, scenes. But wouldn't you know it, when we parked our cart in front of the register Oliver automatically started to help me unload the cart. He picked up the soap and handed it to me and then reached for another, and so on.

Wow, I thought, what is going on with this boy?

So, pushing it a little bit I got down next to him and quietly told him that he would have to give the lady his Dora basket so that we could pay for it. I told him twice and then waited. He turned it over again in his hand and then laid it on the counter.

When we got home I even opened a bottle of Big Lots finest and drank a toast to my awesome little shopper and most beloved Oliver.

Frustrated. Or, an update on learning.

Yesterday I had a bit of a meltdown. I'd say it was about an 8 or 9 on the scale.

As you know, we have decided this year to focus on Oliver's communication needs with both RDI and the Association Method. The beginning level of the Association Method focuses on the child's ability to recognize a phoneme and reproduce its sound. To start, I chose the letters M, T and P. But this soon proved to be a mistake. Oliver learned the three sounds easy enough but was not associating them with the actual letter. He would just run through the three sounds until he got it right no matter what letter I was pointing to. So I scaled back to just one letter: M. It didn't take long until he produced the M sound every time he saw the letter. Then I introduced the T again. But he just doesn't get it. He knows both letters and both sounds discretely but when I try to do them consecutively he gets all mixed up. How can this be so hard? Does he know what I want from him?

I am trying not to put so much pressure on him. And on me. I know that is counter-productive. But it is hard when I so badly want him to be able to communicate.

Thankfully, a friend called at just the right moment and was able to help me see a few positive things. Why is that so difficult at times like this?

Last night I built a powerpoint presentation for him with the letter M and a multitude of slide transitions (which he loves). It is a little variation from the Association Method teaching strategy but I'm hoping it will make learning a bit more fun for him. Hopefully it will help.

Home Sweet Home

Well, we're back. Our vacation was everything I hoped it would be. The island was beautiful, we ate, rested, swam in fresh water and the Atlantic, kept to our own rhythms and didn't invite thoughts of the outside world for 7 days. There were some hard moments, too. Being outside our little bubble of everyday life also brought with it a measure of clarity that was difficult but maybe very necessary.

I took a bunch of pictures and I have some ideas for a post bouncing around but it will all have to wait. We left our island home at 7:30 am yesterday and didn't arrive to our own home sweet home until 10:30 pm last night (what was I thinking?). I'm wiped, the kids are wiped, I've got two suitcases in the front hall full of dirty, wet clothes, sand, rocks, sea shells and assorted other treasures and no food in the refrigerator. Thank heavens for coffee.

What Happens to the Spirit?

We finally had Oliver's IEP meeting. I'd been trying to get it scheduled since April. The school district has been calling me and sending letters asking that we enroll him so they could hire an aide. First, I said, I'd like to have an actual IEP draft so that I know what kindergarten would actually look like for him. Second, I'm not at all sure that we want to enroll him this year. Or ever. But we're taking that one step at a time so I left that part unspoken.

On Thursday we saw a draft of the IEP and asked to take a look at the classroom and meet the teacher. If you've been following along you might remember that we had pretty much decided that Oliver is definitely not ready for school this year. But in the interest of thoroughly weighing both sides of the issue I wanted to go through the decision-making process with an open mind. Luckily for us the next day was the last day of the ESY program and we could go over in the morning and have a look. We were encouraged to take Oliver with us.

When we arrived at the school on Friday morning Oliver wouldn't get out of the car. He obviously remembered the building from his short stint in pre-school two years ago. He was all smiles and laughter and someone who didn't know him well would have thought he was just being mischievous. But this is rather how Oliver shows nervousness and fear. I offered him a piggy-back ride and he agreed. When it came time to visit the classroom, which is located in a trailer -- um, that is, learning cottage -- at the rear of the building, Oliver agreed to take my hand and walk the hallways. As we got closer to the exit his pace slowed to a stop. I offered him another piggy-back ride and when I bent down to let him climb on he turned my body so that I was facing the opposite direction. His message was loud and clear. Don't worry, I said, I won't leave you here. We're just visiting and I'll stay with you the whole time.

The classroom itself was very noisy when we arrived. Everyone was talking and it took me a few minutes to fully take it in. I'm not sure what I was expecting but in all honesty I was completely shocked by what I saw. The room was divided up into small booths and each of the four children in the classroom was paired with an adult, each pair in their own work area. They were working on discrete trials of the kind I'm familiar with.

Touch nose. Touch shoulder. Good job. Do this. Touch nose. Good job.

Every time the child responded correctly he was given a small piece of candy. I stood nearby and watched one pair working and felt so saddened by how clinical it looked and sounded. And then I noticed that the young boy was sitting very close to the back wall and that the heavy desk was pushed so close that it was touching his little body. A rolling cart of drawers was blocking his only exit from the desk. Looking into all the other cubicles I saw nearly the same set up in each space. The children had no freedom of movement.

I looked over at Oliver who had found the one bin of fisher price toys along the wall. He is a boy of spirit, my Oliver. He laughs and cries and feels things profoundly. And he is a boy of movement and strong will. He would never be at home in a classroom such as this. It would break him. And part of me wondered if maybe that is what it was designed to do.

Leaving the classroom I thought to myself: I don't care if Oliver never learns to touch his head. I won't go to any lengths. I want him to have a good and happy life, yes. But most certainly not at the cost of his spirit.

Three Things

#1. I want to thank my friend Burgiboogie for writing about something that has been heavily on my mind for a quite awhile: Unconditional Love. A mother's love for her child is supposed to be such a simple, true, uncomplicated thing. But sometimes it isn't. For me, it gets all wrapped up in my own issues of ego: what I think I want and need out of relationships, out of life. But it is so damn difficult for me to stop in the middle of my frustration and think: ooooh, this is all about me! Look how perfectly lovely and loveable he is! But the frustration and impatience melt away (well, not really, but it DOES get put into proper perspective) when I manage to do just that. So for me, as I wrote in my comment to her, loving has as much to do with my head as it does with my heart. Surprisingly so.

#2. Like so many of my on-line friends we are going on vacation!!! Normally, we visit Nik's family in Switzerland every year for three weeks in the summer. And don't get me wrong, it is always wonderful! I mean, three weeks in Europe being pampered by Nik's mom, what could be better? Think chocolate, chocolate, more chocolate, mountains, fresh air and the distant sound of cow bells. But this year the airfares never came down to what we could afford (we're a family of five now!) so we decided not to go. Instead, a friend of ours owns a small place on an island off the coast of Maine and this year we have decided to take her up on her standing invitation to visit. I went to high school not far from the island but have not been back since the year after I graduated; Nik has never been to that part of the country. So, as of yesterday, all the arrangements are made, the kids are excited, and Nik and I feel as though we are poised on the edge of a real adventure! Pictures will most definately follow.

#3. I don't really have a number three, but two things just seemed pretty paltry for a post. So, how about this: Lime Popsicles. On a day where the temperature hits 97 degrees, you can't go wrong with lime popsicles.

Better Than A Brain Tumor

On Saturday morning I awoke with a searing pain in my right ear. Oh, I thought, this is what an ear infection feels like. But, of course, I had two children clamoring for attention and breakfast and not a lot of time to feel sorry for myself. I mostly just hoped it would go away if I didn't think about it anymore.

No such luck.

While standing over the waffle maker I became conscious that the pain wasn't confined to just my ear. I could barely touch the scalp on the right side of my head without a great deal of discomfort. The pain was radiating from my ear to the entire right side of my head. This wasn't any ordinary earache, I thought. It must be a brain tumor; some horribly malignant kind of tumor was pushing against my skull from the inside. Then: Who would take care of my children? Who would help Oliver?

I told Nik right then and there that I had to go to the emergency room. He looked kind of surprised given that I normally have to be coaxed into taking even the mildest aspirin. And I don't get sick. I can count on one hand how many headaches I've had in my whole life. But if this brain tumor really was growing substantially by the second I wanted to know about it sooner rather than later.

I haven't lead an incredibly charmed life. It got off to kind of a rough start. But in my early twenties I learned some things about being content and in general life started to work out more in my favor than against it. Even when I had the occasional bit of bad luck things generally worked out for the good in the long run. And I began to believe that I had gotten all of my bad karma out of the way while I was still very young and that the rest of it would be smooth sailing.

And then came autism. I don't mean to say that as though autism is the worst thing that could happen to anyone. It isn't. And I've made some peace with it. But in the scheme of things where the absolute worst case scenario in the world is something that negatively affects your child's lifelong health, welfare and happiness, it feels pretty bad. Add to that the feelings of utter incompetence and powerlessness that I felt at the start and you'll understand why I began to feel so vulnerable and why the world began to seem such a random and incomprehensible place. And why it seemed perfectly reasonable to me that I would be dead and my children motherless within a month when I succumbed to brain cancer.

I once suffered from post-traumatic stress disorder. I couldn't cross the street without my heart racing and without visually and physically imagining what it would be like if a car slammed into my body from behind. I imagined the the feeling of impact, the sound it would make and then of flying through the air before hitting the pavement. In my head I knew that there were no cars coming. I had checked and re-checked before stepping off the curb. But in my mind there was always that possibility. The event that caused the PTSD had nothing at all to do with getting hit by a car. But it had left me with this very powerful feeling of physical vulnerability. And in a way, this is very similar to the emotional vulnerability that I have discovered in the wake of Oliver's diagnosis. It isn't something I think about very often and I think I am still a pretty positive, see the sunny-side of things, person overall. But my palate of paint has a few darker tones than it once did. And it affects me in often unexpected ways.

So this is why, standing over the waffle iron at 8:45 on Saturday morning, I found myself worrying if Nik's future new wife and my life insurance policy would be enough to help Oliver through his teenage years. I must make Nik take pictures of me, I thought. There are none of me and Sam will forget what I look like.

"Do you want me to drive you there," Nik asked.

No. It's probably just an ear infection. Either that or a brain tumor, I said, and looked at him sideways to see his reaction; to see if he was thinking the same thing. But he was already deeply involved in negotiating with Sam about which waffle he should have -- the cow, the pig or the barn. Oliver took the chicken.

When I got to the ER the doctor quizzed me about my symptoms for a few minutes and conducted a brief exam. As he was writing something down I tried the same thing on him. I hesitated for a brief second because I really didn't want to give him any more ideas but then said: "I figure it is either an ear infection or a brain tumor. Either way, anytime you have shooting pains through your skull I figure you should have it checked out."

Much to my relief his expression didn't take on a new look of interest. "Nope. TMJ," he said feeling my jaw once again. "Have you been under any more stress than usual? Has anyone ever told you that you grind your teeth?"

"Really? It's not a brain tumor?"

"Not likely," he laughed and handed me a prescription. And with that laugh I exhaled for the first time since I stood over the waffle maker.

It all seems pretty silly to me now as I stop to remind myself so many times throughout the day to stop clenching my teeth and just relax. Living, learning, growing, healing. It is all such a process and at times so very perplexing to me. But I guess I'll take the process over a brain tumor any day.

Getting Started

This new language program -- The Association Method -- really has me coming and going. One moment I'm feeling pretty optimistic and the next I'm completely overwhelmed again. Fortunately, my neighbor is a stay-at-home mom who is also a speech pathologist and I've recruited her to be my head cheerleader. She has looked over the materials and in a few weeks we will sit down together and go over all my questions. In the meantime, I've been methodically reading and re-reading the relevant parts, hoping for divine inspiration.

My original plan was to learn as much as I could and develop an instructional game plan so that we could begin by August 1st. But the other day I decided, what the heck, let's give it a try. So I picked out a couple of phonemes: M, T, and P, wrote them in his new composition book using purple and red markers and pulled out the corresponding 4x6 drill cards that I purchased with the manual. Then I got some paper and wrote the letters out in cursive script, large enough for tracing. For good measure I also wrote them on the chalkboard wall in the play room.

I was a bit apprehensive when I called Oliver over to me to begin. I shouldn't have been. He loved it. To my relief and utter surprise, he loved every single bit of it with the possible exception of the tracing of the letters. And why wouldn't he? Every chance he gets he studies a book or video cover -- or anything handy with letters on it. It isn't the pictures that interest him -- it is always the letters. Especially if the letters are white on red or otherwise in high contrast. He LOVES the Scholastic logo. In fact, throughout our little lesson, Oliver was positively giddy. Especially when we got to the M. I pointed to the letter and made the sound expecting Oliver to repeat it. He got it right everytime and I also got a kiss with each M. Apparently the sound of the M is also the sound of our kisses: "Mwah!" It certainly doesn't get any better!

I've put Oliver's composition book and the letter cards on the shelf, near his favorite spot on the couch, where he can reach them anytime he wants. Everytime I found him with the book I took the time to review each of the sounds with him. He also added the word cards that say "Face" and "Ham" to the other three phoneme cards so I read those to him each time as well.

I feel so bouyed by this beginning success that I have to be careful not to push too hard, too fast. I want to keep it fun for him. And for me.

On a completely different note, I think someone has stolen my youngest child and put a two-year old in his place! His favorite word has become "No!" Said just like that, with the capitol letter and the exclamation point. "No," is closely followed by his second favorite -- the single most annoying sentence ever spoken: "Why?" All I can say is that it is a good thing he is so darn cute! Actually, they both are. See for yourself: