Oatmeal Recipe

As if the grey skies weren't enough, my morning started with a reprimand: There is so much beauty in this world if you choose to see it.

I squint hard trying to see it.

My gaze comes to rest on the boy's face. Beautiful, soft-skinned, still. There's something about him this morning, his far away look out the window suggesting the man who will take his place if I blink. My anxious mind does me no favors and beauty cascades into guilt for not having enjoyed him enough in his boyhood. Greed, my second sin of the morning, appears and I want it all back I think: the small hands, the milky breath. Though even as the thought forms I know it is a lie.

I will my gaze past more piles of guilt covering the table -- laundry-in-waiting -- to the boy, also in-waiting but for oatmeal, Bob Dylan tucked in one ear. He's listening hard when the soft flannel-clad one claims a neighboring perch. Oatmeal for two, then.

It's dreary outside and inside, both. We need the rain, I say to Oliver as though I know what he's thinking.**  Wildfire ash has blanketed the sky for two days, 6,000 acres a verdent dream. Neither respond and I breathe deeply and wait for their beauty to sink to my heart level, hoping it will do the trick of whisky on a cold night. It's the least they can do, I think to myself, stirring the last remaining blackberries into the pot, a final bit of frozen sweetness stretched from last years bounty.

I crush almond slivers in my hand, carefully so I don't make a mess, sprinkle them along with a bit of brown sugar on the two bowls of oats, and try to picture the beating muscle in my chest. Expand, contract, expand, contract, I think. Which will it be today?



** Though maybe I know something more than I fear I do -- here's our morning Dylan soundtrack -- brought to you by my beautiful boy:

"A Hard Rain's A-Gonna Fall"

Oh, where have you been, my blue-eyed son?
And where have you been my darling young one?
I've stumbled on the side of twelve misty mountains
I've walked and I've crawled on six crooked highways
I've stepped in the middle of seven sad forests
I've been out in front of a dozen dead oceans
I've been ten thousand miles in the mouth of a graveyard
And it's a hard, it's a hard, it's a hard, and it's a hard
It's a hard rain's a-gonna fall.

Oh, what did you see, my blue eyed son?
And what did you see, my darling young one?
I saw a newborn baby with wild wolves all around it
I saw a highway of diamonds with nobody on it
I saw a black branch with blood that kept drippin'
I saw a room full of men with their hammers a-bleedin'
I saw a white ladder all covered with water
I saw ten thousand talkers whose tongues were all broken
I saw guns and sharp swords in the hands of young children
And it's a hard, it's a hard, it's a hard, and it's a hard
It's a hard rain's a-gonna fall.

And what did you hear, my blue-eyed son?
And what did you hear, my darling young one?
I heard the sound of a thunder that roared out a warnin'
I heard the roar of a wave that could drown the whole world
I heard one hundred drummers whose hands were a-blazin'
I heard ten thousand whisperin' and nobody listenin'
I heard one person starve, I heard many people laughin'
Heard the song of a poet who died in the gutter
Heard the sound of a clown who cried in the alley
And it's a hard, it's a hard, it's a hard, it's a hard
And it's a hard rain's a-gonna fall.

Oh, what did you meet my blue-eyed son ?
Who did you meet, my darling young one?
I met a young child beside a dead pony
I met a white man who walked a black dog
I met a young woman whose body was burning
I met a young girl, she gave me a rainbow
I met one man who was wounded in love
I met another man who was wounded in hatred
And it's a hard, it's a hard, it's a hard, it's a hard
And it's a hard rain's a-gonna fall.

And what'll you do now, my blue-eyed son?
And what'll you do now my darling young one?
I'm a-goin' back out 'fore the rain starts a-fallin'
I'll walk to the depths of the deepest black forest
Where the people are a many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
And the executioner's face is always well hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I'll tell and speak it and think it and breathe it
And reflect from the mountain so all souls can see it
And I'll stand on the ocean until I start sinkin'
But I'll know my song well before I start singing
And it's a hard, it's a hard, it's a hard, and it's a hard
It's a hard rain's a-gonna fall.

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.

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!!!

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.

I'm just the mother

This is going to sound like a big complaining post but that isn't the way I intend it. It's less of a complaint and more of an observation that can be generalized to, well, lots of interactions with professionals. You see, I take Oliver to a completely awesome pediatric dentist. Every parent I know who has a kid with autism takes their child to this dentist. The guy has a waiting list for his practice. But if you have a kid with autism? You go to the top of the list. Someone told me that the man is a Christian and that he sees his work as a service to God -- or something like that. I don't know about that but what I can tell you is that I'm sure God is most definitely pleased with this guy. Like I said: he's awesome from the clown printed surgical mask he wears right on up to the surfboards and fish hanging from the ceiling.

Anyway, I have on occasion (OK, every visit) had to remind him that standing just to the side and behind Oliver and reaching around his head is not such a good idea. I think it freaks the boy out that suddenly two disembodied gloved hands are trying to reach into his mouth. When you think of it, that IS a little freaky, right? So Mr. Awesome Dentist always graciously moves forward and tackles the job head on, which is much more tolerable for Oliver.

But now here is where I get to the observation part. Oliver hates to have his teeth brushed, although the two of us long ago reached a kind of détente and now I can do it with minimal complaint from the boy. However, Oliver readily -- easily -- lets me floss his teeth and lightly scrape them with the $10 set of dental instruments I bought at CVS (which I've been doing for years, mainly to make visits to the dentist easier all around). I might even say that he likes it as he will often bring me the dental floss or a scraper and ask me to clean his teeth.

I explained all this to the dentist. Multiple times. But he has his kind of routine about getting kids who are often traumatized by dental exams to feel comfortable and that proceeds incrementally towards a full cleaning. And that's OK. I get why he does it this way and I really respect his time and patience and dedication to care for kids like Oliver.

BUT.

Today the teeth-brushing part went kind of rough, probably because it started with the whole disembodied hand thing. And when I suggested that he try cleaning with the instruments the idea was shot down. I distinctly got the feeling that he thought I was trying to rush Oliver too fast. Then, perhaps to make me feel better, he tried flossing Oliver's teeth. When he saw how relaxed and cooperative Oliver became, he remarked that most kids don't tolerate that at all. Next time, he said happily, I think he'll be ready for the instruments!

Now, maybe this sounds kind of picky and, you know, it probably is. But um. ... oh, never mind. I'm just the mother.

Our life in pictures

Two days ago I loaded Oliver's iPad with all the family photos that I had taken over the years. The boy has spent more time than I imagined looking through them and it has prompted some interesting exchanges between us. It feels like we are on the verge of being able to have a conversation about context and memory. We aren't there yet but it finally feels like a possibility. There used to be a time when I was afraid to even hope for such a thing.

Anyway, going through the photos was a good excuse for me to delete a bunch that were repetitive, blurry or out of focus. It was also eye opening in terms of what autism has meant to our family. The pictures show three boys always smiling. And the kid with the biggest smile? Always Oliver. That is one happy kid. And apparently we are always on the go. Yes, it's true, we are a pretty active family and this is, in part, due to Oliver, who is happiest on the go. No lazy Sunday afternoons for us! And the pictures reflect it: hiking, biking, swimming, sledding, skiing, riding the bus, train, trolley, airplane, horses, swings, slides, climbing trees, ladders, walls, mountains. And how far we've traveled! Every inch of our small city, other cities, other states, other countries! It's all there. Autism, it seems, has not slowed down our enjoyment of life one little bit. I wish I could have known that way back when.

Learning by cleaning

So, one of the really great things about RDI is that it has made us very conscious of the many ways that we can involve Sami and Oliver in the everyday, mundane details of life. Over the years, I confess, it hasn't always been fun to involve the kids in the shopping and the cooking and the cleaning and all the other errands that pile up each week. But spending that time together, doing things together, modeling my thinking for the kids and helping them find many ways to participate in our lives together has ultimately been very rewarding. The real goal of working through all this stuff with my kids isn't about teaching them how to do the laundry or make a bed -- it's about executive functioning: what do you do when you are faced with something that isn't working out as we expect? How do you know when you've done something good enough? How do you plan? How do you evaluate and choose between two things that are similar? In RDI, this is what we call apprenticeship in thinking and now that the kids are getting older I can clearly see how it is benefiting both of them; each in their own way.

But the side benefit is, of course, that they were also learning to be independent. With Sami, I suppose he would have managed to pick all this up along the way, regardless of my efforts. But Oliver? He is eight and working independently is just not one of his strong suits -- to put it mildly. This weekend, however, I began to take note of just how far he has come in this, too. Shooing the kids into their room to clean up, I suggested that Oliver pick up the items on the floor and Sami make the bed. At first, Oliver kind of wandered around in a not very directed kind of way and I figured he probably needed some more help so I said: "How about if you start with the cars, Oliver." And then? I stood back and watched him put every car in the right spot. Then he moved onto the books and finally the random toys laying in a heap. Meanwhile, Sami made the bed and they finished up by working together to stack the giant cardboard blocks and then vacuuming. All without a word from me.

Now I know that two kids, five and eight, cleaning their room together might sound like no great shakes to some. But if you only knew how many times I wondered if I would have to stand forever beside my boy, telling him the next thing to do, then you would understand why a little piece of the dread I carry around with me when I think about what the future might hold for my boy evaporated.

And it helped that my house was spotless by the end of the day.

Echoing Oliver

I wish you could hear Oliver talk. I wish you could hear the way he manages to get it all out, but slowly and only with me asking him and then repeating each and every word as he says it. It is laborious. A process every time.

"Oliver," I say as he hands me his plate with half a sandwich still remaining, "is there something you want to say?"

"I. don't. want. to. eat. that. I'm. finished."

Or, when he gets up half-way through the video game he is playing with his brother and I call him back: "What's going on little man?" and he says: "I. don't. want. to. play. anymore."

At dinner when he hungrily looks up from his nearly empty plate there is: "I. want. to. have. some. more. noodles." And later: "I'm. full."

He can say it. The words are there, but he waits to hear my words echo back to him. If I don't he loses steam and trails off into nothing.

I encourage and cajole. Anything to get him to turn his thoughts from silence into words.

Yesterday when we were out raking leaves and despite the cold Oliver took off his sweater. In the spirit of letting him decide for himself I didn't interfere. Then, a half-hour later he picked up the sweater from where it had landed on the back deck and handed it to me saying (without the need for me to repeat it back to him): "I'm cold. I want to put my sweater on." Just like that; full of the glory of pronouns.

He's still mostly quiet and, like almost everyone else in the house, lost in the wake of the verbal typhoon that is Sami. He is pointing now, to everything, with ease and without prompts. We play the pointing game every time we go to get Sami from school and the words are there. "I see a big truck." "I see the sky." "I see a house." I wish someone could tell me what his language would look like in a year, five years or ten. But for now it feels like we're getting somewhere.

For now I let it be enough.

A bedtime story.

As the boys are ready to snuggle down into their giant shared bed, with me in the middle, I remind them:

"Don't forget to pick out a book for me to read."

Oliver and Sami both make their way over to the crammed bookshelf. Oliver looks for 2.3 seconds and chooses an old favorite. Sami takes longer, looking for a book about submarines that I don't remember.

The boys finally take their place on either side of me, I draw the comforter up high and tuck it in under all our chins, for the house is chilly with November, then I begin to read. After just three words Oliver begins to get up. I stop him and ask:

"Don't you want me to read the book?"

"Yes," he replies. But I know I haven't asked the right question because "Yes" doesn't tell me what is on his mind.

Then he offers: "I want to go downstairs."

"Why?" I ask.

"Why." He repeats back.

So I help by getting him started: "I want to go downstairs and get. ..." I lead, even though I know I'm not supposed to lead him in this way.

But he finishes my sentence with: "A ball." Only I can't be sure if that is what he said because Ls are hard and I scratch my head trying to think of what he could mean.

"What?"

Then he says: "Read the book." Ah, I think, he meant book, not ball. He was looking at a book about museums earlier and we left it by the couch.

"OK, sweetie. Go ahead and get the book but be quick. It's late."

And he is off and I hold my breath hoping that he doesn't get distracted once he is downstairs. Hoping that he remembers where the book is in the living room. Hoping that he comes right back upstairs so I don't have to call him. I hate calling him. I hear his feet on the steps. At eight he weighs eighty pounds and has never walked anywhere lightly. "Please," I pray silently to myself, "let him have the book." Let him have the book.

And then he rounds the corner into his room and I see he is holding a large blue ball. He carefully places it near the edge of his side of the bed and climbs back under the covers saying, "Read the book."

Okay, then.