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: -- 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. -- Ollibean is wonderful. This post spoke to me as I see the changes afoot as Oliver moves from childhood to adolescence. -- 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! -- Nick Walker. Need I say more? Well, if you haven't been acquainted with the brilliant Nick Walker, start here:  -- 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.

Wednesday, February 25, 2015

Doing his part

When Oliver started school this year I worried a lot. Would he be safe? Would he be understood? Would he be accepted? Would he be able to communicate when he needed to? And please God, if in this new adventure someone could just befriend my boy? Would that be asking too much? Because it's a big, scary world out there and knowing that you've got the support of your friends really matters! Not surprisingly, perhaps, the need for friendship and connection has very rarely come up in the many discussions with his educational team. But it's always on my mind and, although building connections is embedded in his IEP goals, I think all of us tend to focus on the how of communication so much more than the why of it.

And then came the day last week when Oliver shifted my thinking once again -- what would I do without this boy??   He reminded me and everyone around him that we must always, always believe he is capable of being an agent in his own life.

It was a cold and blustery Thursday when his teacher met me just outside the school as I picked Oliver up following his last class. As she braved the weather I could feel myself bracing for the inevitable, thinking: "Oh no, what has happened now!" But I certainly wasn't expecting what I got. Emotionally, she recounted the story of my boy's day. Another student was having some difficult moments and so she decided to put some space between the two of them. Oliver is very attuned to the emotional state of those around him and I guess they didn't want two kids in emotional high gear at once. After the other boy went to another room, Oliver started a conversation with the teacher, asking what had happened and if there was something he could do. Then he asked if he could see the other boy. With a fair bit of trepidation, it was agreed that Oliver could sit with the other boy. When the two boys were in the same space again, a kind of calm settled between the two of them, much to everyone's surprise. Oliver then typed with the other boy, letting him know that he understood how hard school can be sometimes.

Later his mother sent me a note saying how much she appreciated what Oliver had done for her son and how happy he was to have a friend like Oliver who understood him.

Folks? I had it all wrong: No one needed to 'befriend' Oliver.  Why? Because he is fully capable of being a friend. Of course he is. Of course he is! When he has the right supports and opportunities he will forge his own connections. Just like the rest of us, he wants to write his own story.

And this is why I will fight for him to be included in the great big scary world around him every day. Because we all need friendships and connections and Oliver should be out there doing his part.

Sunday, February 22, 2015

Hear Me Now

There's not a single thing I don't love about this.

Saturday, February 21, 2015

My Lightbulb Moment

Oliver has made tremendous strides in his ability to communicate over the past three years and can now generally tell us what he needs to, if given the right support. But for most of his life -- nine and a half years -- this has not been true. And during those years I thought, as you can imagine, how much easier, how much better, life would be if only Oliver could communicate. And surely it is. I'm not here to say that his ability to express himself, to become much more of an agent in his own life, has been anything other than life changing for all of us. But there have been some surprising revelations along the way that I want to tell you about. Because although life has changed profoundly, it has also stayed very much the same. And if you are a person with a non-verbal child who is comparing what our life looks like (via this blog) to what your life feels like, you might not get the full picture.  You might not guess that I'm as happy about what has stayed the same as I am regretful about some of the profound changes.

If you've read any of Oliver's contributions to this blog, you might think many things. You might marvel, like I do, that they are there at all. Happily, Oliver is one of a growing number of non-speaking people who have found the right supports and are now able to express themselves. But the numbers are still frustratingly small and are often seen as "special cases." You might read the insights he shares and wonder how they apply to the person you love who hasn't yet found a way to express himself. You might be impressed with his clarity and his gracious way of reflecting on the world around him. But what you won't necessarily know just by reading his words is how much they cost him. You might not know that composing a paragraph might take him all afternoon. Or how emotional it can be for him to wrestle with words that label and explain things he has little practice expressing or that he experiences quite differently from everyone around him. And, unless you know him well, you might not see how much his physical ability to type varies from one day, one moment, to the next. You might not also then understand why Oliver is sometimes a reluctant typer.

When Oliver began to communicate, first by hand-writing and then through typing, I pestered him a lot. I asked him a million questions a day, with little understanding for how much it was costing him. There were so many things I wanted to know! I'd waited so long! In all the circumstances of the past when I thought life would be easier if Oliver could just tell me what he wanted or what he was feeling or what was wrong. ... it was his ability to express himself using language that I pinned all our troubles and hopes to. Now that he had language, I was eager to move into the next chapter of our lives together.

Somehow, in my wild imagination, I thought that language would make everything come together so that our lives would be a version of some other story, not the one we had created together for more than 9 years. Instead, what I came to realize is that when a person is in crisis, or having a taxing moment, those are precisely the same moments when hard-won communication is not always possible.  When you love a non-speaking person, you get pretty good at reading body language and moods and vocalizations and facial expressions. You know what sensations they seek and which ones they avoid. You become incredibly attuned to that person, and whether you realize it or not, that person is equally attuned to you. Yes, when Oliver began to type I learned some things I couldn't have known otherwise: his favorite color is blue, he would like to learn to compose music and he is quick to pick up abstract concepts. These are revelations more valuable to me than gold. But more importantly, in the days since Oliver has learned to type, I learned that so much of what I needed to know to parent Oliver well I already knew. And although we have shared some incredible moments together revolving around words, so so many of our finest moments have been wordless. I could post a million pictures here of bike rides we have taken or the two of us drinking in the richness of the forest or the ocean, times when it seemed only right that no words were spoken. Those being-in-the-present moments, before typing and after, were full and perfect just as they were.

I don't want to insult anyone by suggesting that Oliver's ability to communicate his thoughts and opinions has been anything short of amazing. This gift allows for a level of self-determination that will be key to our boy's future and allows me to hope that things will be easier for him. And certainly it makes some things easier in the present but maybe not as you might expect. Without a doubt, the kind of communication with Oliver that is now part of our lives is an enormous gift.  Yet without a doubt, I will also tell you that the thing that changed the most profoundly, the thing that made the most difference in the day to day living of life, was my own mental shift as both his mother and his advocate. And what I most want to tell you is that it was in my power to make this shift before Oliver ever wrote a single word.

You see, the things that were hard before he could type are still very hard. The many strategies we developed over the years to make life easier for my boy are the same ones I still rely on. He still needs support with a lot of the things that have always challenged him. Oliver likes doing the same sort of things now that he did before he learned to type. He still resists doing things that make him anxious (which is a lot) and we still support him to try anyway. Not much has changed about how we make our way through our lives together and this makes me incredibly happy because I think it means we were doing a lot of things right from the start. Sometimes it can be hard to know.

So not much has changed; but everything has changed.

Everything has changed because of the way people treat Oliver. And as hard as it is to admit: I'm talking about me. Oliver demonstrates competencies and understanding now more than ever, because I allow him to.  And I insist that everyone else does it, too.  Despite the fact that his "behavior" is the same as it ever was, he succeeds in a classroom of his peers because I insist that he be there. It is a bitter lesson to learn, nine years in, that when your child fails you can simply choose to believe that you have not yet found a way for him to be successful and that in the choosing you will change everything. Believe me, when you are looking for evidence of competency you will find it just as surely as looking for the opposite is true. Believing in Oliver is my most valuable IEP weapon.

When Oliver was much younger, people encouraged us to always treat him as though he understood everything going on around him, to not talk about him in front of him. And I'd like to say I did. I wanted to. I tried to, anyway. But I also vividly remember moments like the time when Oliver was about 7 or 8 years old and I was tired from being up with him all night and I didn't want to get off the couch and turn the damn light on. He was spinning round and round in the living room like the cost of staying up all night every night for a week was nothing to him. So I asked him to turn on the light, indicating the wall switch across the room. I would like to tell you that I wasn't quietly devastated when, by way of response, he picked up random things around the room, looking at me as though asking: "Is this what you want?" It was so obvious that he didn't understand what I was saying to him in that moment. ... Wasn't it? Because he loved to turn light switches on and off so I knew he knew how to do it. In that moment, though, he couldn't and I thought it was evidence that maybe he never would. I made an assumption about why he was failing. As it turns out, I endlessly made assumptions without being aware of it. Those assumptions diminished what I expected of him. They diminished my power to be the mother and advocate that he needed me to be. And they were wrong.

Friends, if I could go back in time, I would do it in a heartbeat. I would get my tired ass off the couch that day, pull the boy in close to me and tell him that it was all right, that it wasn't a test, that we would do it together. I would tell him that I would be there for him without judgement anytime he needed my help. And I would mean it. I would find a way to help him be successful in these small things so that in the future, when he was faced with bigger challenges, he wouldn't be afraid to try. I wasn't a complete failure in this regard, but I didn't completely get it right, either.

Someone once advised me that you can't pour language into a child, and that's true. You can do all the right things and still have a child who struggles with being able to speak, for whom all communication is a struggle. But you can pour your confidence into your child by choosing to believe that he or she understands everything. You can see your failures as steps on the path to getting it right for both of you. You can assign value to all the silent, beautiful moments that you share together. You can allow yourself and your child some grace when things don't go as easily as you'd wish because these are the moments that build the bonds you are so afraid aren't there.

Last week, I was frustrated with Oliver. He was vehemently against practicing the piano for a few days so I asked him for advice on what to do when this happens. On the one hand, I know he wants to learn. On the other hand, he was so distressed by just sitting at the piano. Do I push him? Do I take a step back? It's hard to know, right? Even now, with all his beautiful words, it's sometimes so hard to know. I think his response is an appropriate end to this post because it is both so individual and so universal. Who hasn't felt this way in their life? I have the luxury of being able to ask him now, it's true. But it's almost like I already knew the answer:

"It takes so much work to succeed at even the easiest things sometimes. I get really frustrated with myself and I don't think that I want to keep trying so I get angry at whoever is helping me. Please understand that sometimes you have to forgive me so I can forgive myself."
 - Oliver