Up, up and away

We're heading out of town for a few weeks. I think a change of scenery will be good for all of us. And oh, what scenery it will be!

See you in June!!

Sweeter than Strawberries

The food season has started in the little green house. May is the time when I kick into full speed ahead mode in the garden, planning and planting and already thinking ahead to what I can set aside for the long winter months. Today I picked, cleaned and set aside 20 quarts of strawberries that will somehow magically become pie, ice cream and cobbler when we need a little a little extra sunshine at the end of the year. I even saved a few from the freezer bags for strawberry margaritas this weekend.

So, I'm telling all this to you now by way of explanation for what is bound to be a pretty paltry post. All I have to share tonight is the image of a boy and his mom, at dinner time, sitting at a table in a local restaurant, passing notes back and forth.

Me (passing the menu to the boy): What would you like to a eat?
Oliver: A bagel, toasted with butter.
Me: What kind of bagel? I see there is a list there.
Oliver: ev. ... (meaning an everything bagel)
Me: And what about to drink?
Oliver: Lemonade

Then, later (regarding the live music at the restaurant; the musicians being friends of ours with whom Sami the banjo boy frequently "performs"):
Me: I like this music. It's different than they usually play. Have you ever heard this kind of music before?
Oliver: Yes. You have a CD.
Me: But I haven't played it in a long time!
Oliver: I know.
Me: It's called Klezmer music.
Oliver: I know.
Me: If you like it then maybe Bruce and the others would feel happy if you told them.
Oliver: OK

Then, on a new sheet of paper:

Dear Bruce,
I really like the music.
Oliver

Before we left, Oliver and I walked to the small stage and Oliver held up the notebook so the band could read it. The look of pride and happiness on Oliver's face as our friends read his note with astonishment said more than every word on the page.

What not to say and other conversation starters

Some pretty remarkable things are happening in our little green house and, as you can imagine, I just want to talk about it. This blog has been a good outlet but I'm out of practice and I have to admit that I feel a little uncomfortable sharing our story sometimes. Thousands of people have visited this blog since I started writing again and that feels a little weird. Part of the reason I continue though is that so many have told me what our story has meant to them. 

And then there is this other reason. The one behind today's post.

For the first few weeks after Oliver began communicating I kept telling people about what was going on thinking: Someone should DO something. Like, you know, someone else. Someone with more knowledge and understanding about boys who can't communicate much at all and then suddenly open up like the unfolding of the most beautiful flower you've ever seen. What I've found most remarkable is that I haven't had to struggle or teach him anything. It was all laying just below the surface, a bundle of potential just waiting until this moment.

But, how do I explain this to the people around me in a way that makes sense? I was at a gathering a few weeks back. Oliver had just that day -- the hour before -- told me that he could multiply and that he learned it from looking in one of RT's** school books years ago. Skeptical, I tried it out, writing out equations then handing him the pen. It was like a game of ping-pong with a fast and sure opponent. At some point I had to get up and get a calculator to keep up.

So at the gathering I found myself feeling that now-familiar dazed feeling and like I really should be telling someone about this!!! But these were people who didn't really know Oliver. They might not have known anything much about autism come to think of it. So maybe I shouldn't have been surprised when two people said some version of: "Wow! Maybe he'll be talking soon!" and one person asked: "But what are his social skills like?" All three comments kind of brought me down -- which I didn't think possible -- and they've managed to linger in the back of my mind despite Oliver's daily incredible awesomeness.

It makes me sad to think that someone might just look straight past all this kid has achieved and can offer to those around him and see only the hand-flapping and hear only the noises he makes and take note only that the kid doesn't talk. They diminish his abilities by seeing them only in the context of what he can't do. Is this what they call ableism? Are people assuming that he has less value as he is, that the goal is to make him like everyone else? Indistinguishable from his peers? Are his achievements really nothing if he can't talk?  If he still struggles with other things that make him so different?

Well, despite the fact that I kept thinking that somebody should do something with regards to Oliver and his new-found ability to overcome whatever obstacles were keeping him "blocked" until the brave age of nine -- I've long suspected that there really is no one else. It's up to Oliver. And me. And all the other people who love him to be supportive and caring despite whatever obstacles that block the rest of us from time to time.

It's up to all of us to keep talking, to keep the conversation going, to keep telling people about the incredible awesomeness of our kids. Because Oliver is as special and amazing and singularly unique as every other person who walks on the face of the earth. No more. No less. And I want people to know it so that Oliver inherits a place in this world where his worth is never questioned.

As Temple Grandin says: Different not less.

And that's something that's worth talking about.


** RT when I started this blog, RT was, in fact, the Resident Teenager. In 2012, however, he is no longer either a Resident of the little green house or a teenager! Time flies!!!

Let's sit awhile, shall we?

Oliver told me again to get the hell off his back. Or at least I'm pretty sure that's what he felt like saying. But instead, after a few rough moments, he wrote: "You are asking too many ques. .."  He's taken to not completing words when he knows that his meaning is understood. Pretty smart, that guy.

But here's the thing: how can I NOT ask questions? It's almost physically and emotionally impossible. I am really, really, really trying to also share with him how I'm thinking and feeling. And I'm trying hard to give him the space in which to do nothing because he seems to need it at the moment. I know how that feels. I am surprised by how often I've found myself just staring blankly into space. I feel overwhelmed and I'm sure Oliver does too.

Long time readers of this blog know that I chose to homeschool Oliver after a really dismal visit to what would have been his Kindergarten classroom. Teaching your child at home is a pretty hefty responsibility. With Sami I have little fear of that responsibility: he has a natural curiosity and a drive to learn that leaves me breathless. Oliver on the other hand? Well, Oliver has a lot of anxiety about not doing things the right way, about getting it wrong. He is hesitant to try new things and that kinda gets in the way of lots of learning contexts.  But somehow that kid has learned an awful lot! So in this new upside down world of ours I've abbreviated our homeschool time to just 20 minutes per day and I'm using that time to try and figure out what I should be teaching the boy.

A few days ago I gave him a book called How Things Work and opened it to a page about the brakes on a bicycle. I wanted to find out how well Oliver understands what he is reading and to determine his reading level. So I asked him if he could tell me what the article was about. After barely glancing at the page of text he wrote: "When you squeeze the brakes on a bike it creates friction that stops it from moving."  Pretty good summary, huh? So today I used that reading from a few days ago to see how well he retained information. This is how our conversation went:

Me: Oliver, do you remember how brakes on a bike work?
Oliver: When you squeeze them they make friction.
Me: Do you know anything else that makes friction?
Oliver: Yes.
Me: What?
Oliver: everything.
Me: What do you mean?
Oliver: Everything moves against air.

Then:
Me: Oliver, do you know the three states of matter?
Oliver: Yes.
Me: What are they?
Oliver: Solid liquid gas
Me: Do you know the planets?
Oliver: Yes.
Me: Will you name them for me?
Oliver: Mercury, venus, earth, mars, neptune uranus pluto.
Me: Wow, that's great. There are actually two more. Jupiter and Saturn.
Oliver: Oh.
Me: Do you know how a plant gets the energy to grow?
Oliver: Yes.
Me: Will you tell me?
Oliver: photosyn. ...
Me: Do you remember everything you hear and see, Oliver?
Oliver: Yes.
Me: That must be hard.
Oliver: It is.

I don't know if that's true. How can it be true? But one thing is certain: the boy knows far, far more than anyone -- including yours truly -- gave him credit for just a few short weeks ago. I wish I could climb inside his head and take a look around for an hour or two. This random drilling for information is not the way to go, I know that. It's upsetting to him and it's just too random help much. So I've declared that today was the last day of school for the year! I just made that up as I sit here typing and without even thinking about it I know that it is the right thing to do. Maybe I need to just sit awhile with Oliver, not ask anything of him, and see how things unfold.

Isn't it funny how the more things change the more they stay the same?

Untangling the story line

I used to tell people that Oliver understood everything that was said. This wasn't always the case. I remember many times when I despaired because he didn't understand even the most basic things. Gradually, and with a lot of attention, that changed. But, of course, without a certain kind of back and forth dialog that most people take for granted, I no way of truly knowing how much of the world around him Oliver understood. Beyond his ability to execute actions upon request, there was really so little I could know for certain about his comprehension. And some days, in fact, his ability to even follow directions -- especially certain kinds of directions -- was compromised.

The last time Oliver was up for his triennial review (for those not in the know, this is a process undertaken by the public schools to determine a child's continued eligibility for special education services. Even though we homeschool, Oliver still receives speech services -- 1hr per week, 9 months of the year! -- through the school system.) he did very, extremely, incredibly poorly on every test they tried to administer. And they made all kinds of allowances. They came to our home.  They even let me try to ask some of the questions. I've mostly blocked the whole experience out, but I do remember standing and watching as Oliver could not answer question after question -- simple things like: point to (or show me) the triangle. Oliver seemed not to understand what was being asked of him. First he would point to the picture of the triangle, then he would shift and look at the examiner questioningly and then he would point to each of the other pictures. It was impossible for her to know if he knew what a triangle was or if he really didn't understand what he was being asked to do. Inside I was screaming: "He knows this! He knows what a triangle is!" But even I had to admit that it looked like Oliver just really lacked the most basic understanding of the world around him. Even though I knew it was not true it was very hard for me to reconcile what I knew about my boy and what I saw that day.

I don't remember if I got a written document outlining the results of that day. If I did I ripped it up and threw it away. I don't keep file folders full of those documents, just the one round filing bin. Oliver obviously qualified for services and that was all that mattered. But after that I promised Oliver and myself that I would never make him take another one of those tests. What was the point, really? I knew the test was failing Oliver and not the other way around.

So the other day I sat down with Oliver in a quiet moment and told him how proud I was of him and that I have always been proud of him. I wanted him to know that we don't love him more now that he can communicate. I also explained to Oliver that he was not the only person out there who can't talk, that there are many others like him. He took the pen from me and wrote:

"They should keep trying. Nobody else will be able to unlock them."

"Were you locked, Oliver?" I asked.

"Yes."

"What unlocked you?"

"I started to write."

"Oliver, why can you write now when you couldn't before?"

"Because I was blocked. I'm not blocked anymore."


This conversation might not tell us all that much but it's gratifying to me for many reasons. It seems he is saying that whatever has shifted for him, allowing him to communicate at the age of nine, was internal, not something that was done to him.

I wonder if Oliver will ever be able to tell us more than that. I imagine that it was a complicated untangling of many things. I like to imagine all the work his brain was doing while he slept, while he was riding his bike and when we were rock-hopping through the woods. The absolute grace that Oliver has always exhibited when doing those last two things never helped him a single bit on all those tests he had to endure. But its what kept us going all those years and I have to believe its an important part of Oliver's story.

Twinkle Twinkle to Debussy in one post

You may be wondering about Oliver's first piano lesson last week. Well, I was there and I'm still wondering about it.

I hired a friend -- someone Oliver knows a little; a musician who plays the piano but doesn't necessarily know how to teach it. I chose Greg because over the years I've watched him interact with children and he is blessed with a natural reserve of patience and creativity. I talked to him beforehand about what we've been learning about how Oliver learns and I counted on his ability to think outside the box.

The lesson itself was pretty unremarkable. Oliver was very anxious. He did not want to sit at the piano with Greg. In fact, he did not want to sit at the piano at all. But he did agree to stay in the room and listen. And he did agree to let Greg come back next week. In the meantime, he was asked to practice Twinkle Twinkle Little Star. The notes are marked on the keys and he has the corresponding numbers marked on a sheet of paper.

But what is most interesting is what happened two days after the lesson. I asked Oliver to sit down at the piano with me one day to practice. He did not want to do it. Undaunted, I put the song aside and just asked him to make some sounds on the piano with me. He did not want to do it. I mean he really didn't want to do it. The more I pressed the more he objected.

So I launched into a little pep talk about practicing. It is important to know that a person can get better at something over time, I told him. And I reminded him about how he fell down a lot when he first learned to ride his bike but that now he is such a great rider. I think I went on and on a bit. At one point, Oliver took the pen and wrote: "I want to play well." And that just added more fuel to the pep talk -- you know: every great musician started out as a beginner, blah, blah, blah, that sort of thing.

Then, Oliver took the pen again and wrote: "I know what would help."

"What, Oliver? Please: Tell me!!"

To which he replied: "I must have a tape recording of Debussy."

At this point can I just stop and tell you how amazing that sentence is on so many levels? I must have a tape recording of Debussy. I don't know which part I love more. The "must have" part melts my heart. And tape recording? Where did he get that? Debussy? Why must it be Debussy? I think I've repeated that sentence in all its glory to myself about a thousand times since Thursday.

I must have a tape recording of Debussy.

I think it is the most beautiful sentence I've ever heard.

After that I spent a few minutes clarifying the request and within a half hour the kid had nine mp3 tracks downloaded onto the iPad. But as I was getting it all ready the questions just kept coming and despite my agreement to ask Oliver fewer questions, I couldn't help myself.

Me: Oliver, how will listening to these songs help you learn to play the piano?
Oliver: I can listen and hear the notes.
Me: But how will you know where to put your hands on the keys to make those notes?
Oliver (giggling as if that is the funniest thing he ever heard):  "I'm really smart!"

Um, OK. I honestly just don't know what to think. The kid wants to play Debussy and I suddenly have no doubt that he is somehow figuring out how to do it in the same stealth way that he figured out how to read and do math. But I'll tell you that I don't have the slightest idea about what I can do to help him along the way and it is killing me! Do I just stand back and let him do his thing? Is there something more I could be doing? Somehow I don't think figuring out the notes to Twinkle Twinkle is what he needs.

Any musicians out there in the peanut gallery? I'd love to hear your thoughts.

Apologies

Today was a day full of apologies -- at least four of them that I can remember. The first apology of the day was made to a dear old friend and offered in the face of a broken promise. Another apology went to Sami when he pointed out that I was preoccupied and not listening to him fully. But it is the other two apologies that I want to write about here.

One of those apologies went to Oliver.

The last week or so has been tough on all of us. Inexplicably -- or seemingly so -- Oliver started behaving in a manner that was trying everyone's patience. There was lots and lots and lots of whining about everything. Lots of resistance to everyday activities. Lots of darting away. And lots of outright disobedience. As the days passed my patience did too. But that isn't a great measure of anything -- I'm not a patient person by nature. Rachel, on the other hand, is. Rachel is the young woman who has been Oliver's attendant for the last couple of years and I've submitted her name for possible sainthood. So when Rachel comes to me and says she is at her wits end (no, she doesn't say: "he's driving me craaaazy" as I might, she says: "I just don't know how to help him be more comfortable."  See? She IS a saint.) Then I know for sure that something is going on and I go into sleuth mode. If you are the parent of a child with autism then you know what I'm talking about. I looked at the situation from all angles and tried to figure out how 2+2 somehow equaled 5.

BUT! Oliver can communicate now! Aha! I thought. I'll just ask him!!! And so I did. Or at least I tried. And tried again. I phrased the question a little differently each time. I tried asking him questions about things I thought might be the issue.I tried asking him specific questions.  I tried asking him open-ended questions. But each time he answered without giving me any useful information. Like the following exchange:

Me: Oliver, why are you so upset lately?
Oliver: Because I want to go on the computer.
Me: But in general you seem very sad and angry everyday. Can you tell me why?
Oliver: I want to go outside.

Every so often I would try again. And I tried to also ask him frequently throughout the day for input into the things that were happening around him. What would he like? What was he feeling? Did he want to tell me anything?

Then, this afternoon he grew distressed when we sat down together at the piano. On the distress scale of 1 to 10, with ten being a meltdown, it was more like a 3. But it was the cumulative effect of days and days of hovering around a 3 or 4 that was wearing us all down and I was determined to figure it out. So I pulled Oliver to the couch with a pen and paper and tried again.

Me: Oliver, why are you so upset about playing the piano?
Oliver: Because it is too hard.
Me: What makes it hard for you?
Oliver: Please would you stop asking so many questions!

And then, everything clicked into focus. I had so badly wanted to hear what Oliver had to say but I wasn't really listening. He had told me how hard it was for him to write numerous times. For nine years he has related to the world in one way and now, almost overnight, there is this new -- enormous -- expectation that he relate to the world differently. I wasn't thinking about how overwhelming it must feel for him.

One of the initial lessons an RDI parent learns is to think carefully about how we are verbally communicating with our children. Normal, everyday dialog between communication partners is something like 80% experience sharing language (comments, exclamations, statements) and 20% questions. But somehow, when you introduce a child with autism to the equation, that ratio gets turned around and we wind up asking the poor kid questions all day long. We are so desperate to know what they know, think, and feel that we inadvertently challenge them to perform every time we communicate with them. Think of what it would feel like to be constantly expected to do the thing that is the hardest for you. And that, somehow, is what I did to Oliver.

It hit me like a ton of bricks.

And so I apologized. And I thanked Oliver for telling me how he felt. And for putting up with me.

Before bed tonight, I pulled him aside and wrote:

"I hope I'm doing a better job not asking questions." To which he responded: "Yes you are."
Me: Thank you for telling me how you felt.
Oliver: You're welcome.
Me: You still look sad.
Oliver: I'm not. I'm very happy.

So, the last apology that I offered today (I hope) was to myself. I was pretty hard on myself after Oliver's revelation. I tried not to imagine how trying I've been for my boy. I tried to forget how frustrated I've felt with him for the past week. I wish there were some rule book or coach. But there isn't. At the end of the day there is just me and the boy navigating this adventure together. And I hope I can be forgiven for forgetting that often the most meaningful answers are to questions never asked.