Monday, March 24, 2014

What I say and what I can't

Sometimes I say words not because I want to but because I can't stop myself from saying something until my mind lets go and I don't have to anymore. This can get frustrating because people think I don't understand sometimes that I can't have the thing I keep repeating. When I just really want to say words that say what I am thinking I can't make them come out. This has been really hard. People don't think someone who can't speak is capable of being intelligent. You get used to being talked to only like a small child but not someone who might be thinking. 


Friday, March 21, 2014

Oliver's video library

Oliver has said that he would like to keep a video library of him typing each day and describing something about himself. Yesterday, Oliver finally, finally, had his first day of school after many false starts, so it seemed like a good place to start. If you look in the upper right hand corner of this page you will see a link to his video library where I've placed the video. I can't assure you that we will manage to post something everyday but we will try!! This first video is pretty long but without edits you can see how much effort goes into typing and the kind of support that Oliver needs just to get his words out. You can also see my occasional impatience, Oliver's occasional frustration and my fresh from the shower hair!! But this is what facilitated communication looks like for us.

If you have any questions that you would like Oliver to try and answer he would also love to hear from you! Sometimes I think it feels kind of lonely for him in our little corner of America, so comments help, too!!

Monday, March 10, 2014

Sticky webs of wrong ideas.

"Did you care about how I felt before I could type?"

That's the question Oliver asked me last week during a period punctuated with some trying moments.  As always, we find time to sit down together at the iPad afterwards and Oliver apologizes and asks for forgiveness. His struggles with impulse control cause frustration for both of us. The trick is to get through it and to a place where we both feel OK on the other side. It isn't always easy. But I'm learning how to slow down and wait until I can get to the place where my responses only come from a place of love and empathy and deep gratitude for this little guy whose struggles are often misunderstood. I'm making progress.

Last week it occurred to me that it was I who should be asking Oliver for forgiveness. I have so many words at my disposal and they are easy to come by. I can explain why I misunderstood the boy for so long, why I didn't parent from a place of presuming competence even when I thought I was, why I said what I did and how I made choices along the way. But none of that probably matters so much to a little boy who couldn't make himself understood and who only needed my wide open love, acceptance and unshaken belief.

"Did you care about how I felt before I could type?"

The answer should have been unequivocally, "Yes!" But it's more complicated than that. So much of Oliver was unknowable before he could make himself understood through typing. Of course I cared how he felt! But somehow I had also allowed myself to be moved from a place where I thought I might understand the world from his perspective. I had "othered" my own child and I didn't even know it. Whoever started the story that Autistics lack empathy, the thing at the very core of our humanness, drove a wedge between us so slight that I couldn't even see it.  The wedge reverberated: "He can't understand so I can't understand."  Over the years I knew the empathy story was a false one; Oliver felt more, not less. But the wedge was already there. Wrong ideas about autism are pervasive and sticky like cobwebs across this path we're traveling. You carry them with you long after you've broken through to the other side.

I couldn't answer Oliver's question the way I should have and he didn't offer me forgiveness. But I stand now in a place of light where the webs of wrong ideas are plain. I can't change the past but I can promise to drive out the wedge between us that falsely led me to believe that he stood so far from my own understanding. And I can join my voice with his, though it often seems small and unheard, leaving it here along the path for others who might follow.

Wednesday, March 05, 2014

An odd tale of teaching in America

When the boy was very young he screamed and he kicked, he bit and he cried, to express how very much he did not like what was happening. He was anxious, frightened, confused and angry.


A beautiful boy, knuckles just suggestions in dimpled small fingers. He was four, and then five.

They said it was teaching, this is how he would learn. They had science to their credit. And lovely Lovaas behind them.

They came to his home: singly, in pairs and more, adults looming over the little boy with no words. Non-compliant, a biter, his behaviors: proof.

His body, they moved it to do what they wanted.

Full-physical prompts.

Across the room.

Up the stairs.

Hand over hand.

Get the icon. All done.

Ignore the screams, it's for his own good and be careful, he bites.

When that didn't teach him to do what they wanted, they consoled his distraught mother:

"He's done surprisingly well for one so low-functioning."

Then one day the screaming stopped. A woman's sharp cry, fearful silence following. Then mother found son with blood on his face, at the feet of a woman hired to teach.

"He bit me."

They refused to give up their full-physical teaching. Despite objections of mother and son, they had a  district-wide contract and science on their side.

Meetings were had but no one conceded that perhaps it was the teaching, not the boy, that should change.

In time the son healed and so did his mother. A tiny scar the reminder of that long ago time.

They gave up on the experts but not on the boy. They made life about more than schedules and drills. They made it about finding his way in this world.

When the boy found a way to make himself heard, he knew what he needed and could say it at last.  An encouraging smile, a hand on his shoulder. A touch to help him connect body and brain.

That's against the rule they told him. It's widely discouraged. That gentle touch has no science behind it. We have the power, you see, it's for us to decide.

We know you better than you know yourself.

But if you change your mind and need us to tell you how to act and behave, we can do that, you'll remember, you have the scar to prove it. We've got the science and books. And lovely Lovaas behind us.

Tuesday, March 04, 2014

Typing is hard

Typing is not my idea of fun. No one believes that controlling my hand to do what I want can be so much work. Getting my fingers to choose the right letters is very hard. So much concentration is going into keeping myself really from making mistake after mistake. In the beginning it was much more difficult but because I have practiced so much it is getting easier. So now I can type on my own. Lots of time I still don't want to type but my mom knows that I can get better at typing so she keeps pushing me not to give up. One day I believe that typing will be as easy as riding my bike. I remember when my legs and feet could not move the pedals on my bike. Now I can do it easily.


Friday, February 07, 2014

Hurry up and wait

I have been going to school every day but I am not learning anything much. I get frustrated that other kids easily go to school but I must make myself wait. I don't have an aide because the school doesn't have any other kids like me that type to speak. But I love learning and I am ready. I really like the kids and the teachers I have met. Hopefully I will be a student soon.


What can I say? Oliver is ready, others are not. Until yesterday we were going to school everyday to observe a social skills class in which he will, eventually, participate. But that participation won't happen this week. Or next. And our time of observation is over. It is frustrating and I am reminded of the many reasons why I chose to homeschool in the first place. Chiefly? I am terrible at waiting. This week makes six months that we have been waiting for Oliver to be able to take his place in the classroom.

But another truth is that I am in no hurry. At least not if the rush comes at the expense of the right supports. Educating a child like Oliver -- a kid who is incredibly smart and who must overcome significant obstacles -- is not an easy thing to do well. But doing it better than well is what I'm asking. And for this I am willing to wait a bit longer. I don't just want them to make a place for him, I want them to embrace him and to celebrate what he has to contribute to the school and to our community. Without the right supports his challenges will obscure his gifts.

In the meantime, Oliver is becoming more and more an independent typer. I have gradually increased the physical distance up to two feet between us as he types and he is making better use of the word prediction element of his app, Assistive Express. His typing is getting faster and more accurate with each day that passes.Though, truthfully, his motivation is waning. He has spent eleven years observing the speaking world and now he wants to join in but is told to wait a while longer.

When we began this journey towards public education Oliver told me: "I want to type on my own so I can go to school."  He has worked incredibly hard to achieve his goal. Hopefully, one day soon, they will let him.

Monday, January 13, 2014

Day One

I had a very vivid nightmare a few years back, the kind that really sticks with a person. I dreamed that, despite having several advanced degrees under my belt, someone discovered that I never finished high school and that I would have to complete those credits in order for everything in my life that followed to count. If you knew how much I hated school you would understand the magnitude of this nightmare. But at least it wasn't middle school. You're with me here, right? Who didn't think middle school was a nightmare?

Well, I hope it won't be so terrible the second time around.

I never thought I'd be a helicopter parent but I don't know what else you'd call me. In a few hours I'll be going to school with my son. Middle School. I hadn't planned for this to happen but then we got an invitation to sit in on a class for 40 minutes each day this week and, since Oliver doesn't have an aide yet, and because right now I'm the only one he can type with, I'll be going to school with my son. Middle School.

And the thing is: Oliver is pretty mortified, too. He is not taking this in his usual agreeable manner. When I told him, he politely wrote: "I really believe that things will start out better if you just let me do it on my own."

And can I tell you how that made my heart soar? First: this kid is so kind and generous in the things he says. He didn't say: "Holy Hell! The last thing I want is for my MOM to go to school with me on the first day!" Secondly, I don't think I can ever fully convey what it feels like to see this kid setting his own goals. I didn't tell him that he had to type independently before enrolling in school. That was his idea from the start. And now that he can do it? He wants to tackle the world! And I don't blame him. He has earned this fair and square.

Then, last night when we were typing together, with great teary sadness he wrote: "I don't want you to go to school with me." So we tried for him to type on his own a little, meaning I stood in the hall, saying words of encouragement because even though I don't touch Oliver anymore when he types I DO sit next to him for moral support. But for every letter he got correct, he hit five or six wrong ones. I was so proud of his determination, despite the fact that it was anchored in a deep desire to, you know, not spend that extra hour today with me! In the end he was terribly disappointed that he couldn't manage on his own.

Then: "You told me I would have someone to help me."

So, I explained that he doesn't yet have an aide and that he would have to practice typing with that person and so for this week, anyway, and maybe a little longer I would have to go with him so he can participate.

"So," I asked, "are you OK with me going with you tomorrow?"

"Yes. I think that knowing that it is just for a little while helps."

Yeah. You got that right, buddy!