Wednesday, November 05, 2014

Mama's View of 7th Grade

What is there to say, really? Seventh grade for Oliver is a vast improvement from the fiasco of last year. It all came down to finding a supportive person in the administration at our local school district. That's all it took to get things moving in the right direction: one person who really saw Oliver. A person with the power to make a difference who listened to him. I hope to write more about that, and also more about the HUGE adjustment it has been to send my boy off to public school each day. People? I miss my boy! Truly! So often during my homeschooling life others remarked to me that they could never homeschool. But homeschooling is about a 100 times easier if you ask me. AND, I got to spend my time leisurely doing things with my boys. Oh, how I miss those days!! My hat is off to all of you who chose the school route from the beginning. It involves a level of stamina that I'm not sure I could have mustered back when Oliver needed so much more support with everyday life.  Anyway, the most important thing is that Oliver is happy. Happy with a capitol H!

I'm uploading here a short video of Oliver using his Math Paper app. He is included in Algebra I this year and, because it is an advanced class, for which he will receive high school credit, the pace of instruction is fairly rapid. It takes Oliver quite a bit longer than his peers to complete the work, even with all the modifications that they have made for him. I searched for quite some time to find a math app that would accommodate Oliver's movement differences and still let him perform all the same calculations that other students would do with paper and pencil. (Oliver has no physical support in this video).


Monday, November 03, 2014

7th Grade

I go to school now because I wanted the chance to experience life like everyone else. Everyone wants to feel good about finding somewhere to fit in. I was really just not very happy at home where everyone saw what I did all day. I wanted to do something for myself. Going to school and not being like everyone else can be hard but I have really found everyone to be trying to help me. Have so many people always helping and believing in me is what makes me know I will succeed. I spend half the day in school and I take two classes, science and math. I really like going to these and I want to say that algebra isn't as hard for me as it might seem. The really hard part is showing what I understand. When I have a good support person who understands the way my body moves it is so much easier to show what I am capable of. 


Sunday, November 02, 2014

The Great Veggie Sacrifice

There are a lot of things I haven't done very well this year, I'll tell you right now. I've wasted a lot of time and spent a good bit of energy feeling bad about stuff. As I go about the business of this rush-around life I've had to shush the little voice inside my head that keeps listing all the things I should have gotten to, the things that I felt deserved more attention than I had or wanted to give. My garden for instance? What usually looks like this: 

 Ended up looking like this:

 And when I say it "ended up" like this, you should know that I planted it and then completely became unable to care for it. I didn't harvest a single thing from this usually productive space that I can see from my kitchen window. That takes some effort, my friends, because I seeded it abundantly. I literally watched from my kitchen window as the invasive morning glory vines strangled every thing out there. That is, until I couldn't take it anymore and began keeping the blind on that window drawn all the time so I wouldn't have to watch the take over.  But every day when I passed through the yard on my way to the shed where I keep my bike, I willed myself not to look in the same way one does when passing a highway accident. I saw a groundhog out there one day and instead of chasing him off, I cheered him on, glad that someone was enjoying those tomatoes.

You might be surprised by how much energy it takes to shush that little but persistent voice. Or maybe you wouldn't be. I suspect that this little voice pesters the hell out of a lot of people.

This blog is another thing the voice has nagged about. Six months passed, seven, nine. ...  Once in awhile I half-heartedly started a draft and then gave up after a pathetic paragraph or two. During that time I was constantly drafting sentences in my head but they never went anywhere.  What do I really have to say to people, anyway, I'd think. In the years since I started writing we had somehow emerged from our long stay in that uncertain place we landed after Oliver's diagnosis when I wrote: "We're not quite the family we were and we haven't yet found how all of these pieces will fit together to create the family that will see us through. And as individuals: mother, father, brother, we haven't yet learned how to fill those roles in this new context." I remember those feelings vividly but I'm not that person anymore. Today, I feel confident and strong in my role as Oliver's mother. Mothering has come to feel so ordinary. Nothing to write home about, really. Why bother? But then Issy Stapleton was on everyone's lips again and I was reminded of why I've kept writing all these years. My voice is small but it is my job to do what I can to amplify the message that my son deserves the same basic human rights as everyone else.

I've also let the cooking and cleaning slide, I can't be bothered planning meals, I never know what's for dinner, the laundry is always piled up somewhere, I have no idea where the shin guards or the long pants are, sometimes the recycling piles up for weeks before I manage to remember to drag it to the road, I'm pretty sure the dust bunnies have started a campaign to take over the house and heaven help you if you get a whiff of Sami's feet. Guilty. I feel guilty about it all, because I used to care about these things but I haven't done them very well this year. And if I look at the list of things that I used to put my energies into that I don't anymore, it's really quite long.

But if I'm going to be fair to myself there are a few things I did very well this year:

I began to make my own health a priority by working out regularly and addressing my chronic exhaustion. Because really, no one wants to be around me when I'm complaining about being tired all the time! I supported Oliver in his quest to become a public school student, because he is awesome and he deserves it and because I really, really missed sitting through three hour IEP meetings! I also made being present with my boys a priority this summer by packing them up for two long and incredibly wonderful road trips -- in which there was camping -- that taught us at least as much about ourselves, each other, responsibility and fun as we might have gotten in a year's worth of gardening, cooking and doing the laundry together. During those six weeks on the road with my boys I faced a lot of fears and learned that each of us was far more capable than I had imagined in so many ways. That alone was worth the great lettuce and tomato sacrifice of 2014!

So, I did a lot of things not very well this year, a few important things very well, and I'm counting myself lucky because it is only November 2nd so I still have time to even the list up a bit before we close the books on 2014. And hopefully, I'll be back here writing about it a little more regularly.

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.