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