Not quite a walk in the park

We had a few sad moments in our little green house yesterday.

The day had been full, punctuated by two long, wonderful bike rides. Sunshine and warmer temperatures were a big improvement from the day before when the weather kept us inside pretty much all day. After dinner I dashed outside to get some gardening work done while everyone else was unwinding: Sami with a library-borrowed episode of Bonanza, Oliver with the iPad and Nik with the Economist. But as I worked I heard Oliver through the open window growing more and more vocally distressed. At one point I even came inside to see what was going on only to find him on the couch still with the iPad and not looking all that upset. So I returned to my garden. Sometimes it is hard to know. What sounds like distress might be something else entirely. Years of relying solely on these clues from Oliver have made me pretty attuned to his emotional state, but for a boy who laughs and giggles equally when he is happy as when he is anxious, sometimes it is just hard to know.

Soon, however, it became apparent that Oliver was, indeed, quite upset. Big crocodile tears and sobs to make your heart break told us how he was feeling but not why. And despite the fact that Oliver is now relatively conversant with pen and paper, it surprises me how many moments like the one I'm describing still occur. How do you shove a pen and paper in the hands of sobbing nine year old and get him to focus on explaining himself? How do you know that there is something on his mind, something bothering him, something that will lead to this kind of upset without asking him all the time? Figuring all this out is part of the process. After so many years of hoping that Oliver would learn to communicate, I guess I just imagined that when he did a lot of these problems would somehow also be magically solved. So I find it surprising now to find ourselves in this odd state of being -- between what we were and what we're becoming.

Later, after Oliver had taken a shower and dressed in his favorite pajamas, I did ask.

"Oliver," I wrote, "Why were you crying earlier?"
To which he answered: "I wanted to go to the park."
Me: What Park?
Oliver: Waterman.
Me: Why didn't you tell us?
Oliver: I can't talk!
Me: But you CAN write, Oliver!
Oliver: Yes.
Me: So why didn't you bring a paper and pen to tell us?
Oliver: I couldn't do that every time!
Me: Yes you can! And I will listen every time, Oliver!
Oliver: OK.

I don't know how hard writing is for Oliver. It certainly seems very easy for him from where I'm standing. It almost appears to be without effort. Although maybe that is because I still find it so surprising that he can do it at all. He has told me that it is hard for him but not why -- is it the physical part? Anxiety? Confidence? I hope I'll understand more one day so I can help make it easier for him. I hope he'll soon learn that his words have incredible meaning and power.

In the meantime, pen and paper now litter every table and counter in the house. And the stacks of scribbled conversations grow taller by the day proving, my friends, that anything can happen.

Upside down and feelin' alright

I wanted to write something here each day this week. But honestly, the world feels upside down at the moment and I have trouble finding the words. I am truly "filled with astonishment and perplexity," as the Thesaurus tells me. I am dumbfounded.

On Tuesday I had the following conversation with the boy (and by conversation, I mean that we wrote back and forth. No words are actually exchanged):

Me: Oliver, I think I found a piano instructor for you. You can start next week. Do you still want to learn to play?
Oliver: Yes!
Me: Is there any particular kind of music you would like to learn?
Oliver: Dobussey.
Me: Where did you hear that?!
Oliver: On the radio.
Me: Do you think it will be hard?
Oliver: Yes.
Me: Well, I think you are going to be a wonderful musician!
Oliver: Thank you.

So there are moments like this punctuating our day nearly every day. It seems difficult to believe that not very long ago I wasn't sure that Oliver knew his last name or how old he was. I wasn't all that certain that he even knew the alphabet. Oh sure, he could sing the alphabet song, but from one day to the next he couldn't seem to recall the names of letters or the sounds they made on the printed page.

Perhaps the most meaningful moments, though, are the ones that help me understand how to help him. Today, for instance, we had the following exchange:

Me: Oliver, why are you so upset?
Oliver: I'm mad.
Me. Why are you mad?
Oliver: I don't want to type anymore. It's hard!
Me: Do you think it will get easier with practice?
Oliver: Yes.
Me: So are you willing to practice again later?
Oliver: Yes.
Me: What do you want to do now?
Oliver: I want to read a book.
Me: With me or by yourself.
Oliver: By myself.

Of course, I probably could have figured out that Oliver was upset about the typing. He had worked hard and needed a break. But it felt so wonderful to be able to say something that directly, for sure, addressed what he was feeling: This typing thing is hard!!! And I could reassure him: Don't worry, it will get easier! In the past I might have made all kinds of assumptions about why he was upset and what would make him feel better: a snack, a walk, some other activity. But I had no way of knowing if I was even close to addressing the real issue. But now he can tell me: I just want to be left alone.

And here's another little bit to the story that I love -- He lied! He did not want to read a book. He just wanted to be alone and zone out on his bed but I'm assuming he thought that it would be more acceptable to me if he, you know, took a book with him! 

So, yes, the world feels pretty upside down at the moment. It's not all rosey. There are some bumps along the way. We've all got nine and a half years of learned behavior to consider and reconsider. But overall, I'd have to say that upside down feels pretty alright.

Oliver the rock star

It was four a.m. when I got out of bed this morning after falling fitfully in and out of sleep all night. Oliver, you see, had given me something to think about yesterday. A young man we know who has a brother that could be Oliver's twin had sent a request via Facebook. Here is the result:

My first thought was: "Thank God we have a piano!" But believe me, if the kid had asked for an upright bass, I would have run right out to buy one.

Sami can make long lists of the things he wants to try, have, learn about and avoid. Exploring his interests is easy. But for a kid with little language, and for whom communication is so difficult, figuring these same things out becomes a series of trial and error. 

Finding out that my boy wants to be a musician when he grows up is nothing short of a miracle. This is a kid who, just a few short days ago, had nothing but the present. He had no past or future tense. He couldn't even reliably answer a yes/no question. He still can't. Not verbally. It is absolutely astounding and confounding.

But I slept fitfully last night because I can't help but wonder why. Why is this possible for Oliver now? What shift happened for him that he can now express himself this way? He is an amazing, wonderful, ever-tolerant, special person. But no more than any other kid like him. If this is possible for Oliver, it must be possible for legions of others.

I wish I had more to offer than our story and some words on a piece of paper. But who knows? I'll bet someday soon Oliver will have something to say on the subject.

Finding our words

I'm struggling to find the words to describe how things are unfolding with Oliver. Let's be honest: it is nothing short of amazing. Here was a boy with few words. 100 maybe? 200? They were the ones he needed. He could say: "Can I have some water?"  with support but usually the single word "Water!" was enough to get what he wanted.

Within the space of three weeks I now find myself having complex conversations with this same kid. Where did I put all those exclamation points? Cause that's a sentence that certainly deserves one!!

And what do we talk about? Everything. And nothing much. Turns out they are pretty much the same thing. Think about the conversations you had with your spouse and your kids this morning. You traded all the information you needed. You talked about your thoughts, ideas, feelings and opinions. The weather. Lunch plans. What to have for breakfast.  But it all probably didn't amount to much. Most of the time we lead pretty mundane lives. So maybe that's why I sometimes forget to use my exclamation points -- because in some ways it all seems so normal.

And yet? Wow!!!! Our normal at the moment is so profound! All these years I had tried to get inside Oliver's head, to figure out his thoughts, ideas, feelings and opinions -- but really, there is just so much 100 words can convey. And now? He can tell me that the kid at the park shouted at him to go away and that it made him feel bad but that he just ignored it. He can tell me that he likes swimming in the ocean and that he also likes oatmeal but he is kind of sick of it right now and definitely doesn't want to eat it for breakfast again.

And he can tell me that he also knows how to add, subtract and multiply because: "I saw it in one of RT's books. .... when I was about five." And when I stare at him in wonder and disbelief he can also say "I'm just really smart, Mom." 

He can also tell me that he prefers writing because when he speaks he has a hard time finding his words. And these days I kinda have a glimpse into how that feels.

ps: If you're reading this, don't feel shy about leaving a comment! I'd love to hear from you. Blogging is lonely with no comments!!!

There's more than one way to read a book

The more time I spend with Oliver trying to figure out what he knows the more amazed I become. Amazed isn't even the right word. There is no word big enough to describe what it feels like to "discover" anew this kid who has been by my side practically every day for the past nine and a half years!

It seems that the boy has a photographic memory but I'm still not clear what that means in terms of what he understands about what he is viewing. If you hand Oliver a book and open it to any page he can summarize the content after a mere glance at it. I wondered what kind of texts this would work with so I have given him a variety of things from books of children's poetry to dense children's encyclopedias about dinosaurs. In every case he has been able to summarize or paraphrase what he has seen.

So, why am I only now discovering that my boy can read? It's a question I've been thinking about and trying not to think about for the past couple of weeks. I feel a huge sense of failure for not realizing this sooner. In our homeschooling this year we've focused on the Bob Book series and truthfully I felt so good about Oliver's growing ability  to read these. Now I see that his real work wasn't in reading the books, it was in reading them aloud. How frustrating this must have been for him!! His ability to read far exceeds his ability to speak. Even now, once he writes something he cannot usually go back and read aloud what he has written. Speech and decoding written language apparently call on two different parts of the brain. I'm only just beginning to understand this.

I'm also a bit amused and chagrined to think of all the times I wished that Oliver would just sit and look at a book. Many, many times I scolded him for not really looking at a book when I asked him to. I can hear myself now: "Oliver, will you please just look at this book for five minutes while I (insert some inane cleaning activity here)?!" Then I would become frustrated as I watched Oliver flip through a book at the speed of light. He probably wondered why it takes everyone else so LONG to look through a book!

Making up for lost punctuation!!!!

I wrote yesterday's post at the end of a long, tiring day. I promised myself that I would finish it before going to sleep and ended up staying up much later than usual to do it. Pushing the publish button for the first time in so long felt strange. And exhilarating. Discovering what is going on inside Oliver is like winning the lottery, Christmas morning and sitting at the top of a very tall roller coaster drop all at the same time. Nik and I have been looking at each other in wonder a lot lately. "Did he really just write that?" "Can you believe he knows that?" "Wow!!"

 But when I re-read the post again just now I wondered where I put all the exclamation points? I mean, let's face it: that form of punctuation was made for stories like the one I am telling. So to make up for yesterday, let me just say: We are having conversations with my boy!!!!!!!!!! He taught himself to read!!!!!!! He can write!!!!!!! At nine he has finally found a way to communicate!!!!!!! There should be something better than an explanation point for those sentences, don't you think?

So anyway, we are having lots and lots of conversations around here. I'm constantly shoving a piece of paper and a marker in front of my boy. Frequently he writes things like: "Go away now!" "Leave me alone!" "I don't want to write anymore!!" and "I just want to play Doodle Jump." But there are also wonderful conversations like this one:

Me: Oliver, tell me about your day.
Oliver: It was a great day.
Me: Why? What was so great?
Oliver: I rode my bike with Papi and we went to Fridleys Gap for a hike.

Or this one:
Me: Papi wants to go for a bike ride. Do you want to go?
Oliver: Yes.
Me: Where would you like to go on your bike?
Oliver: One of JMU or EMU
Me: Would you like to go just with Papi or with the whole family?
Oliver: With the whole family.
Me: Then you'd better ask Sami if he wants to go.
Oliver: Sami, will you go for a bike ride with us?

Just everyday regular dialog between a mom and her son. Nothing profound is being said but the saying of it is the most profound thing I've ever experienced.

Flying by the seat of our pants

Whoa! Lookee here: A blog! With my name on it! Imagine that!

For the first time in, well, fifteen months, I'm staring at my little expanse of blogspace here and thinking of all the things that I could say to fill it up. I've got quite a story to tell. It's epic. Profound. Life-changing. You might not even believe it. There are times when I'm in a state of sheer disbelief, myself.

So that's what I'm going to do: tell the story. At least the parts of it that I know. You see, it's still unfolding and every day things are both a little more fantastic and a little more clear. But it has not yet ceased to be amazing. And I want to tell it because I think maybe what is happening inside the walls of our little green house might be useful in some way to other people.

A year ago, I quit the blog. It wasn't anything I'd thought about. I didn't sign off in any thoughtful or dramatic way. I just quit writing. I suppose I expected that I would post again one day but for one reason or another I just didn't.

Writing about our journey with autism had always helped me process the experience, to sort out the complicated mix of thoughts and emotions. But in that year prior to my last entry, I was having trouble figuring out how to write about something. Twice that year, I had been gently told by people whom I trusted (our developmental pediatrician and the school psychologist) that I should start facing the fact that Oliver was intellectually disabled and that -- I'm paraphrasing here -- I shouldn't expect very much from him. You see, at the age of eight Oliver was still only able to communicate at the most basic level. And he was never able to demonstrate much intellectual ability through any kind of testing. I went through a bit of a crisis at the time. It wasn't that I would love Oliver any less if he had a greatly diminished capacity to learn, it was more that I just didn't believe it -- despite the fact that there was so much that Oliver could not or would not do. But for the first time in the five years since we learned of his autism, I started questioning what I believed to be true about Oliver: was all my faith, hope and optimism built on the blind love of a mother? It was a rough couple of months for me. I was a complete fool.

Somewhere along the way, mid-year perhaps, I came to my senses and just decided to let it all go. The tests, evaluations and learned opinions of professionals had never really been of much use to us. In the end, we just have to go with the boy in front of us and help him achieve to the best of his potential. Even if they are right, I decided, it doesn't change a thing about how we think about today and tomorrow.

I'm not even sure how to continue this story. Because, you see, one thing almost certainly doesn't lead to the next in this amazing tale. Telling you of our homeschooling efforts, for example -- the weeks and weeks of labored progress with the Bob Books series and my excitement over Oliver's slow but growing phonemic awareness  -- would only be a red herring. So instead, I'll just tell you the story of the day at the end of March 2012 when I put the pen in Oliver's hand. I needed to do something different that day. I was bored with all the things we had been doing and thought we might work on copying. Oliver was pretty good at tracing shapes and letters, but he has never been able to draw one on his own. If you put a writing instrument in his hand and asked him to draw a square, he might start off accurately but then inevitably end in random scribbling, not able to finish the shape.

But on this day, something slightly different happened. I wrote out 6 or 7 letters of the alphabet and told him we would practice writing them. I left my hand cupped around his to help him remember to rest his hand on the paper as he wrote. And do you know? The boy seemed to write beautifully and with great ease. I wrote out the numbers one through ten and he did it again. I wrote out: "My name is Oliver," and he did it again. I was buoyed and excited but I didn't want to push it. But each day I challenged him a little bit more.

After two days, I realized he didn't need to copy my sentences. If I kept my hand very lightly cupped over his, he could write whatever I asked him to. Soon, I was writing out questions, helping him read them aloud, and growing more and more astonished that he could answer my questions in writing with perfect spelling, perfect grammar. Not long after that, I realized that Oliver could read much, much more than he could say. It was a Saturday morning when we had the exchange pictured below and our lives have not been quite the same since.

I'm not sure where all this is going. It feels pretty remarkable. Three weeks ago I wasn't even sure if Oliver knew his last name. Two days ago he read a book about dinosaurs and explained to me, in writing, what the word extinct means.

The funny thing is, as I reflect on it tonight, our life hasn't really changed all that much. Suddenly we know that Oliver knows a good deal more than we thought he did. Each day we're astounded by what he is able to communicate through writing. It feels pretty good to have my belief in Oliver finally validated in a way that the rest of the word values even though I wish I could say that I don't give a shit. But we still feel like we're flying by the seat of our pants with this little guy.

Lucky for us, he sort of seems like he knows what he's doing and is very tolerant of his befuddled parents.