Tuesday, October 20, 2015

How to Say Good-bye in Cape Breton

Cape Breton Highlands, NS. July, 2015
The trip was half-planned before I thought of my mother. We need a vacation, I said. We need to do something different, have a real adventure. The previous two years had been hard on us. First one mother, grandmother, died, fifteen months later the other. Our kids watched both of their parents tend the dying for long months at a time. At least they'll know how to do it when our time comes, I joked darkly. Idylic summers in Switzerland had been our habit. Costly salve for the wounds of children missing out on half their genetic story line but for a few weeks each year. Now we were profoundly free from the apron strings of mother-love. We could go anywhere. Turns out, I would take us home.

My mother was the happiest I ever saw her, those years in Maine. She still worked the long, hard hours of the barely getting by, but there were fewer children at home; life was easier. And then there was the beauty of the place. The landscape, our constant companion, allowed us to participate in her sometimes surly, always generous, beauty, for nothing more than the cost of walking outside. Poverty reduces your expectations in life, bearing witness to extravagant beauty expands them, makes you feel like you deserve something. During those years we all expanded into beauty unimaginable at the beginning of our story. My mother most of all. When she died, we found a note among her papers suggesting (never asking or directing, as was her way) that her ashes be spread in a place of beauty where the rocks meet the sea. Maine, we said.

In a mean twist of fate, my mother's ashes were stolen, along with the rest of the contents of her house. The getting over, the bitter moving on -- I was born to it, raised to it. So I was my mother's daughter once more and did both. Yet, two years after her death I found myself planning a visit to the place that had called to her. The place where she found the happiness that had so often escaped her. And more, I planned that we should keep going to the place she had dreamed of. Cape Breton.

I had already booked passage to Yarmouth on the western shore of Nova Scotia. I mapped a route to Halifax, then up to Louisbourg, northward to Cape Breton, on to the Bay of Fundy, then crossing to Prince Edward Island before heading home via New Brunswick, then Maine. My mother would have loved this trip, I said. The words spoken uncurled long forgotten conversations, the subconscious imprint of a place I'd never heard of. Cape Breton, she had said. From that moment the trip became about saying good-bye to my mother.

During July and August we had our adventure, camping for five weeks, discovering ourselves, discovering beauty, learning to tell new stories about the kind of people we are and hope to be. At night, fire embers glowing, we curled ourselves together in the tent, a snug family cocoon, and I told more stories. I wove together the past and the present teaching my children who they came from so they will know how to weave their own. And each day when we climbed the rocky shoreline or looked to the distant blue horizon, my mother was there with me. Look at this, Mom. We made it. And each day, I'd look for the most beautiful place I could imagine, the place where I'd say good-bye.

When I found the spot where I thought my mom would be content to meet the wind and the seas, I took a small green composition book from by pack. Words written some twenty years before her death, neatly spanning a hundred or so pages. She wasn't one to share her private thoughts and feelings. She never told us how she felt about us, never remarked affectionately about anything of our character or personality. That she loved us was indisputable but I would have liked to know why, apart for the accident of our birth. Maybe to her that was all that really mattered. We were hers and she was ours. That was enough. The journal, forgotten, was not destroyed with the others in the backyard fire pit after she sensed something was wrong and before it became inescapable to us all, was a difficult read. She wrote her stories, her truth, and I found the words and meanings my mother was never able to say when she was alive.

I placed the book on a rock on a high plateau overlooking the sea and offered it fire. The wind made a show of it, which I think she would have liked, sending whole pages alight and aloft, floating out over the ocean, burning paper ghosts, dancing on unseen currents.  In the face of it, I no longer held regret for the ashes of her body, nor of what was unsaid. Her stories, consumed by the fire and by me, were enough.

Monday, October 19, 2015

Our Stories, Ourselves

The birch tree impatiently taps against my window, her summer clothes in a brittle pile at her feet. What are you doing sitting in there? she chides. This golden slant of sun and blue October sky is fleeting. Last night, we gathered around a fire in the back yard, eating chili and listening to Dylan -- the boy's pick -- remind us that times they are a changin'. As if we need the reminder. Pumpkins congregate, waiting; squirrels squirrel away; and I grudgingly make room for more sweaters. Oliver spends large chunks of time flipping through family photos on his iPad, nostalgic as I am for the things that have come before.

For the second year, Fall is making followers of us. We follow the schedule, follow the rules, follow rhythms not our own. But in the quiet, in-between moments, we make room for the making of our narrative. We tell each other what we remember, what it means, how we felt about it. Remember Christmas Eve last year when we didn't know the tent leaked? I was already angry because you were hiding out in the car reading the newspaper and eating the cheese I was saving for later. Then, racing against the departing sun, I took up my spot at the Coleman stove making fish tacos for our Christmas Eve meal and the skies opened up. Everyone looked to me. Hurry up, I said. Eat! Soon even I could see that it was ridiculous to eat in a downpour and we picked up our plates, rushed into the tent, laughing. Then we discovered that our borrowed tent leaked and we laughed some more. What else could we do? As the storm raged on, we sat in the only dry spot, drinking sparkling cider and eating cheese and crackers. I didn't mention that half the cheese was gone already and we spent the rest of Christmas Eve using the dryer in the bathroom shelter and hoping our quarters would last. Earlier, when we were using beach towels to catch the rain that was falling inside the tent, Sami, you very magically and with great love said: This is the best Christmas ever.  And it was because that was the story we told ourselves.

I was at the grocery store early Sunday morning. A rare trip without The Boy Who Loves To Shop. I found myself wondering what it will be like when Oliver has a life of his own, one that doesn't involve weekly grocery shopping with his mother. Remember when we used to practice tossing the groceries to each other? How it felt like we were doing something wrong but I told you boys that it was OK because we intended to buy those items anyway? And then it got out of hand because Sami started throwing things to me when I wasn't looking and I feared we really would get kicked out so I said Let's not do that anymore. For the first time yesterday I could see how others might not find grocery shopping to be the adventure we always make it.

Standing in line I watched an indigenous woman -- from where? Peru? Ecuador? Guatemala? She navigated from one aisle to the next, her tiny daughter pirouetting in a wide circumference around her. Her own private moon. Their orbiting a primordial truth on display right there next to the Libby's canned pumpkin. I squinted at them as I learned to do when I was in love with the painter and he was trying to teach me how to see the shape of things more clearly. Adjusting my gaze, I wondered if I would see my own reflection, a tiny boy by my side, in their journey past the cakes. No, we had been something different altogether. Oliver was a comet, not a moon. Their neatly prescribed orbit was never part of our story, I told myself.

Or maybe, I sometimes wonder, it simply wasn't part of the story I told myself.

Friday, October 16, 2015

Thoughts on Independence, Part II

*** This is the second part of a post that needed to be broken up. To read the first part first, click here

If you are reading this blog and want to know a little bit about the actual mechanics of typing for Oliver, this post is for you (and written with the consent of my fair boy). Oliver is moving along incrementally. His abilities on any given day are inextricably tied to his mood, how well he slept, how anxious he is, how much he is anticipating what lies ahead of him in his day. ... you know kind of like the rest of us. But I think it is worth pointing out because Oliver's performance, like everyone's, is so context driven.

I'm using a couple of videos to augment some of the points that I made in my last post concerning independence and why it is still preferable for Oliver to have physical support when he is typing despite the fact that he can and does type without it.

Oliver has decided that he would like to learn to type with two hands. Because we are sort of off the grid a bit when it comes to support for his typing (meaning we don't have easy access to professional guidance), we generally end up just making it up as we go along. These videos reflect our trial and error process of trying to determine what kind and how much support he needs.

Oliver tends to practice his independent typing off and on throughout the week. We don't work on independence everyday choosing instead to spend our time engaged in exchanging thoughts, opinions and ideas. ... you know, conversing! The fun stuff!! By practicing independence, I'm referring to the motor planning skills that go into his communication. When we do this, I ask him to spell single words that are known to both of us so I can coach him more easily. It is easier to understand the mistakes a person is making if you know the context. In the case below, the word is "popcorn".

I had not planned to tape the exercise but on the spur of the moment decided to have Sami stand nearby with the iPad to record so I can try and keep a better record of what Oliver's typing looks like as he tackles this new skill. Watching him struggle so much with his apraxia (see the constant over-shooting and under-shooting) as he typed I was reminded again of the principle of Presuming Competency. I wondered if someone who doesn't know Oliver's capabilities, might have watched Oliver type and quickly come to the conclusion that he didn't know how to spell. Perhaps they would think he was just typing gibberish and not let him finish. I know that in Oliver's life there have been many, many times when I didn't understand the true nature of the challenges I was seeing.

So then, after I made the popcorn he was asking for, I asked Oliver if he would type again for me. This time I stood behind him and rested the tips of my two index fingers on his shoulders. Occasionally I reached down and tapped his left hand if the letter he needed should be typed with the left hand. The difference between that little bit of support and no support is fairly obvious in his level of accuracy, I think. 

This video shows Oliver typing the word 'Popcorn'
with no physical support and some verbal prompting.
This video shows Oliver typing the word 'Popcorn' with
minimal physical support and some verbal prompting.

An even greater level of support would have resulted in more fluent typing with fewer errors.When Oliver types for communication, I give him the maximum amount of support he needs to make the least number of apraxia-related errors (currently this is four fingers placed firmly on his right shoulder.) When he works on developing his independence, we work to reduce the amount of support he needs without taxing him to the point of causing frustration. It is a process that we negotiate together and it looks different on different days.

Most importantly, Oliver is setting the goals and the pace, based on an inward desire to achieve the next level in his skill set and not, I sincerely hope, out of a sense of fear or inadequacy.

Thoughts on Independence.

"Thank you so much for asking me!" This was the earnest reply of a friend whom I had asked for help a number of years ago.

Asking for help didn't (and still doesn't) come easily for me. My mother was a strong woman who raised five children on her own. She often could have used help but rarely asked for it. She knew how to live on next to nothing and modeled it throughout my childhood. And when she did ask for help, because food and electricity aren't free and winter makes no concessions for poverty, I think it probably shamed her. She was born just after the Great Depression, the product of mid-western baptist farmers  -- a proud sort of people. They were all the product of the "Pull yourself up by the bootstraps" American ethos. My mother taught us, as her parents taught her, that one must never let others know about our failures, our weaknesses or struggles. I can see why she believed that and why asking for help then brought her shame. Laying your weaknesses out for the world to see leaves you vulnerable and open to criticism and that can be frightening. I'm sure she would have been mortified by this blog, making a private journey public. But from where I sit, toughing it out can sometimes require less bravery than putting your vulnerabilities on display and demanding acceptance. It takes a lot of courage to not be ashamed about needing help in a society that prizes independence, mistakenly conflating it with an individual's worth.

But my friend's remark was genuine that day. I can still hear how she said it, as though I was honoring her by asking her for help. In that simple sentence, she taught me a truth that I've been unraveling ever since. And in the unraveling, I've come to question assumptions about independence that I didn't even know I had.

For instance, independence in communication is always a goal for people who type, but I think it is imperative to reflect on why this is the case and the value we place on it.

Should Oliver work towards independence so he won't have to rely on another person for help to express himself? Well, yes. But there are other reasons for focusing on independence that are a little less benign.

First, there is the issue of public perception. Sadly, I've recently come face to face with the fact that if one learns to type through facilitated communication methodology, there will always be some questions of authorship. In our experience, these questions (accusations) come from people who have never met Oliver. People who have never bothered to read more than a few slanted studies, have never bothered to try and understand why there might be truth on two sides of an issue and ask why that matters. Instead, users of facilitated communication like my son are dismissed as another sad case of a person being utterly manipulated by his caregivers. A human Ouji board. ... Don't get me started!

Truthfully though, I'm glad that people are asking the questions of authorship and validity. When a vulnerable person is communicating something, it is right and good to always look at the circumstances and ask if the person is genuinely and freely communicating his or her thoughts. I always want there to be safeguards in place for this, to protect Oliver. All of his facilitators (he has six of them) are taught how to build these safeguards into their work together.  Influence can and does happen. And the layers of influence can be complicated and not immediately obvious. Just as they are when I hear his brother Sami, who was born with the gift of gab, say something that I know is influenced by something I've said to him. Truthfully, I am more worried about this kind of influence than I am about someone moving Oliver's hand to type something not reflective of his own thoughts. Because of our long ago history with ABA and the violating use of full-physical prompts, Oliver knows that it is never OK for someone to force him to do something he doesn't want to do. He's not a toddler anymore and he's stubborn like his mother and his grandmother.

It strikes me as so absurd that the general public finds it acceptable, even considers it best practice, to physically move a person to complete the desired action (compelling a person forward) and call it a teaching strategy while also being completely against using physical touch to provide backward resistance (pulling away from the target action) in communication. To me, this is reflective of general attitudes towards the intelligence of non speaking people.

When the ABA therapists forced Oliver's hand to retrieve the icon from his visual schedule, despite his very vehement objections, it was because they didn't think he understood what they were asking him to do.

When Oliver first learned to type and required backward resistance, I lent him my hand because I knew he could do it and understood that he needed support, that is, touch to help him anchor his body in space.

So, while I do hope Oliver will someday be completely independent in his typing, I'm less and less inclined to push for it based, even in part, on my desire for him to be believed unequivocally. I don't want to lay that burden on my hard-working boy. Oliver, and many of those who type, know these are the stakes and the emotional toll can be very heavy. He feels that he needs to prove himself every time he sits down to type.  It is wrong to complicate his struggles based on the prejudicial perceptions of others. Pushing for acceptance is the better fight.

And finally, I think it is important to examine our deeply held belief that independence, in all things, is the pinnacle of achievement. When Oliver was diagnosed with autism he was just three years old and among my first concerns was: Will he ever be able to be independent? This is still a concern but not because I think there is anything wrong with being dependent on others. After all, who among us is really independent? Most of us are just able and privileged enough to put supports in place to mask the fact that being part of society makes us inter-dependent. And, having parented Oliver now for 13 years, and having recently cared for my very strong minded mother before she died, I've come to believe that caring for others elevates our lives and lets us tap into what it means to be human on a very deep level. This was the lesson in my friend's gratitude. My son is part of the fabric that connects us to each other as humans. That's no small thing. My concern over his dependence on others is rather due to his vulnerability and my fear that in this world where independence is paramount, the prejudicial cards are stacked against him.

In the end, I've come to think of independence as a kind of phantom pursuit. I don't really know what it means anymore or why it is seen as such an important goal. Where would we be if we didn't need one another? What a less full and textured life we would all lead! I think in many cases the desire for independence is fear-based and that isn't a healthy way for me to approach goal-setting. I want Oliver to know that it is always OK to ask for help and rather than diminishing his value it elevates us all if we let it.

Wednesday, August 12, 2015

Vacation (or something like it)

We're just back from a long-ish road trip (which I hope to write about from my own perspective soon).  Oliver wrote the following yesterday about the trip. Not really what I imagined his take away would be, but wonderful all the same!

Coming home from vacation really made me appreciate finally all the many things I have in my life. Having a bed or a hot meal are things that I have just taken for granted. I slept in a tent for many nights on our trip and I ate food my mom cooked over a fire. I made myself try hard not to complain but it is hard not to have all the things that make my life comfortable. Not having many conveniences everyday made some things more complicated. It made me think about people who live without water and electricity all the time and not just for fun. Sometimes our tent leaked and it made me think of people who don't always have the comfort of solid walls and a bed on a wet night. I have worked very hard in my life to do things that other people take for granted so I know we don't always understand the hardship of others. I had a great vacation. I made the best of being at the ocean by swimming everyday. Being in nature without restriction is a good way to be in the world. 



Tuesday, March 10, 2015

All About The Music

Oliver's piano playing is a revelation to me. Seriously! When will I stop being surprised by this kid?

I know we are always exhorted to "Presume Competence!!" these days -- and it is a welcome shift in the autism rhetoric -- but frankly, I'll be really honest with you: I don't always know how to do it. I'm getting better and now that Oliver has the means to communicate it is a thousand times easier. A million, trillion times easier!! But before Oliver could communicate, before I understood that apraxia played a significant role in his ability to demonstrate his competence in almost all areas, I found it hard to understand that the support he needed was largely for his physical abilities and not cognition. At the age of nine, no professional had ever mentioned the word apraxia to me.

So, for example, when Oliver was nine and we were still working on 1:1 correspondence, he was unable to demonstrate to me that nine objects equaled 9. If someone had told me that I should just assume he understood and move on, I would have objected. I would have told you that if he can't demonstrate such a simple understanding how could he demonstrate anything more complex? Maybe a better teacher would have known how do it but I certainly did not and I'm guessing that the teachers in our local ABA program wouldn't have either.

If only I had understood that everything about a motor pattern -- initiating, maintaining and stopping -- required tremendous mental focus for my boy! I would not have endlessly come up with new ways to teach him the concept of counting without factoring in the actual physical ability to execute the task I laid before him. If you had told me to presume competence I wouldn't have known how to do it! That's why you won't hear me use those words very often. At one time they would have seemed very hollow to me. But I also believed -- truly, truly believed -- that my boy had endless untapped potential. I was doing everything I knew how to do, I just didn't know how to tap into it. I think this is the maddening part for most parents. So if you are one of those people frustrated by the phrase, I want to tell you: I get it!

Presuming competency works if a person is given the right supports. That is the critical missing part of the "Presume Competency" mantra. Providing the right support means understanding the nature of a person's challenges and it isn't always self-evident. So this is where I fell short. And, I'm guessing, where many, many others fall short. When autism as a motor difference is more widely acknowledged, I'm guessing that teaching strategies and research agendas will show that Oliver is special only in his luck and circumstances. I believe that there are many, many other Olivers out there silently waiting!

So, anyway, back to the piano! One of the first things Oliver told me when he began writing (nearly three years ago!!) was that he wanted to be a pianist and learn to compose music.

So, um, yeah. Where to begin?!

My knowledge of music is limited to a mental picture of black squiggles on horizontal lines and the phrase Every Good Boy Does Fine. That's it. But by that time I did know certain things about Oliver: He has a photographic memory. He has trouble locating his body in space. He learned to read by deciphering patterns, not through phonics -- which I understood to be whole to part learning rather than part to whole: Gestalt learning. And that he would not tolerate masking tape on the keys of the piano. Things must not stick together in this household!

Armed with these bits of information I spoke to several local piano teachers. All of them looked back at me blankly. None seemed overly enthusiastic at the prospect of a student like Oliver. One agreed to give it a try. I knew we were doomed when he showed up with a roll of masking tape. We gave up at the end of the second lesson. Sometimes it's good to know when to call it a day!

I put the idea of learning piano on the back burner for awhile, which was easy given the amount of time and energy that has gone into this year's great Public School Adventure! But it was always in the back of my mind. When Oliver tells me he wants to learn something, I'm not bound to give up easily. And then, one day last December, I read about a piano teacher that made me think it was time to try again.

So we did. And, Friends? I'm back to where I started this post because it has been a revelation. A revelation in what a person can do when he is understood and given the right supports. My boy is playing the piano! He is on his way to achieving this thing that seemed so out of reach just a short while ago. And without the right physical supports, and the right teacher, it would have been just that: out of reach!

There is so much to tell you, really. How I found this awesome, incredible teacher. How she recognizes his strengths and teaches to them. How she effortlessly assumes his competency even when I'm still not sure! How she totally gets how he processes information. How I always leave a lesson thinking: Well, this next step is going to be hard! And then how it totally isn't even a fraction as hard as I imagined! Just thinking about it makes me want to explode with happiness. Happiness for Oliver in his achievement and happiness that I could finally help him do something he has wanted for so long.

I never dreamed that learning to play the piano would wind up being such a powerful force in our lives, but it is shaping up to be as significant as when Oliver first started writing. As significant as learning to ride a bike!

I can't even begin to tell you! But I'm going to try: so don't be surprised if my next couple of posts are about the music.

In the meantime, here are two short clips. The first is after two lessons and the second after five.



Friday, February 27, 2015

Friday Round Up

When I first started writing here, I was doing so partly because I didn't know anyone in my own community with a child like mine ( still don't). Sure, I knew other parents of autistic children, but not one of those kids looked like Oliver. I was tired and alone. And everything I read -- everything -- was fearful. So yes, I had a good bit of anxiety about what I could expect from life after we learned to say autism. But even from the start, I nurtured a small seed of optimism and I questioned everything. Writing this blog was what helped me to frame my own thinking. Often I don't know what I think until I write it down! Reading other blogs and finding voices like my own, a chorus that I could join, helped me grow that seed of optimism into a giant tree of belief in my boy. Ten years ago it seemed there were so few positive voices available to parents like me. Today, happily, there are an enormous number of autistic advocates who have rightly taken charge of the conversation. There are also other allies who write eloquently about topics that have often interested me here.

Here are a few of my favorite this week:

http://autism.typepad.com/autism/ -- Kristina Chew was the first person I found who wrote about life with her son, Charlie, in way that I could identified with. She still blogs about life with Charlie as he inches towards adulthood.

http://ollibean.com/2015/02/23/autistic-adults-do-not-look-like-autistic-children/ -- Ollibean is wonderful. This post spoke to me as I see the changes afoot as Oliver moves from childhood to adolescence.

http://respectfullyconnected.blogspot.com.au -- Make sure you have a cup of coffee and some time on your hands if you sit down to read here. Every post is remarkable. How I wish these voices were available to me when I was at the start of my journey!

https://www.youtube.com/watch?v=wXXFeKwVQeQ -- Nick Walker. Need I say more? Well, if you haven't been acquainted with the brilliant Nick Walker, start here: http://neurocosmopolitanism.com/

https://www.youtube.com/watch?v=LwIyy1Fi-4Q  -- This last one is about unschooling (which is the approach we use). Everytime I get panicky that I our approach to learning is too radical and start to feel controlling, I re-watch this presentation. This week I watched it with Sami, followed by some really enlightening conversations.

Happy Weekend!

Thursday, February 26, 2015

What would you tell yourself?

I just realized that I've been writing in this space for nearly ten years. Ten years. I've only gone back and read older posts on occasion. I don't like to be reminded of the fear that underlined my first year or so of posts. But yesterday I indulged in a little trip down memory lane and found myself surprised that in some very basic ways my thinking hasn't changed all that much. Overall, I feel pretty thankful for the road I've traveled, despite how rocky it felt at the start.

Here's a post that I wrote back in the beginning of 2009 when Oliver was seven. I might now have chosen slightly different language, but the message is one that I still need reminding about from time to time!

A Spoonful of Carrot

If I could go back in time and tell my early-diagnosis-self a thing or two, I know just what I'd say: don't sweat the small stuff. Of course I'd probably also want to take my shoulders in my more wizened hands and shake good and hard. I could have used that back then. But this business about the small stuff? So important. When I look back over the countless things that occupied me, that took up emotional space that I was borrowing from something more important, well, I see that those things weren't worth the amount of upset that I caused myself, Oliver, and the rest of the family. The list is long and varied: wearing shoes and socks, wearing a coat, eating with utensils, biting fingernails, picking the nose, licking this, that and the other thing. ... um, that poop thing. ... well, you get the idea. Some of you may know that while you are in the midst of these things they feel like such a very big deal. In the midst of it there were times when I felt at war. I felt that I needed to conquer or -- in the terms of ABA -- to extinguish. Now I can only shake my head at myself. This was my child, not my enemy.

I'm reflecting on this lately because Oliver is newly interested in utensils. Yes, you read that right: spoons, forks, knives, ladles, whisks -- you name it. At first I didn't really pay much attention, Oliver just seemed to always have a fork or a spoon in his hand. But we spend a lot of time in the kitchen together. Then I slowly realized that our meals were without drama. They were without the monitoring and reminding. (Oliver, don't forget to use your fork. Your fork, Oliver!) And it only smacked me in the head when I realized that Oliver was now using utensils for everything. And I mean everything. Witness this photo (that I took especially for Keen):

. ... to read the rest, click on through to the original post, here.  Then come on back and tell me what it is that you would tell yourself if you could.