Today was another two therapist day. Monday and Friday are the days on which Oliver has two ABA sessions, one from 9-12 and the other from 1-4. Six hours in all. This is a lot for a three year old and we still fall a few hours short of the recommended 40 hours per week. This is something I struggle with because, well, he's only three and 40 hours of therapy seems like a lot even if they do try to make it fun. On the other hand I've read that theraputic programs are most significant before the age of 6 so in terms of implementing interventions there is no time like the present. When I ask the people at the school and his lead therapist their opinions about adding more time to his schedule they turn the question back on me: "Yes, 40 hours is what the research says. But what can he handle?" What can he handle? Is this the kind of question that other mothers can answer? Because I just don't know.
I have been reflecting a lot on the perplexing nature of autism and how it is expressing itself with Oliver. His speech pathologist and his lead therapist concur that Oliver's lack of speech is not an issue of processing but rather of motivation. He is not motivated to speak. He has not made the connection between verbalization and getting what he wants and so teaching him this is our task at present.
Oliver's lack of speech and my own crash course on the vocabulary of autism have me thinking a great deal lately about language, writing, expression, thought and of where words fall short. Linguist Benjamin Lee Whorf wrote that "the categories and types that we isolate from the world of phenomena we do not find there because they stare every observer in the face; on the contrary, the world is presented in a kaleidoscopic flux of impressions which has to be organised by our minds - and this means largely by the linguistic systems in our minds. We cut nature up, organise it into concepts, and ascribe significances as we do, largely because we are parties to an agreement that holds throughout our speech community and is codified in the patterns of our language." Or, the words we have available to us, or that we use, influence how we think about a thing.
I am keenly aware of this power of language in my own life and when I am feeling tired or sad I try to remember to respond outwardly by using positive words. I've found that it is almost impossible to feel badly when you are using words of hope. Writing, for me, has a similar effect which is why I started this blog. Writing about my son, our family, and autism helps me to frame the experience and so I have chosen to write mostly of positive experiences and the hope that I feel for our future. Because without internalizing hope I cannot be the mother Oliver deserves.
The ability of language to influence thought is likewise evident within the public perceptions of autism as demonstrated by the vocabulary used to describe autism. Everywhere I read of the "tragedy" of autism, of "desparate" parents willing to do anything, and of the "grief" one feels upon receiving a diagnosis for a child. But my son is not a tragic hero; he is a joyous one. I am not "desparate"; I am hopeful. And while I may occassionally feel grief, I also feel gratitude that Oliver is being helped. Giving voice to these alternative expressions of Autism is so important because it will influence how people think about our children.
Whorf's hypothesis also has me wondering about how Oliver, with his lack of language, thinks about and experiences the world. Without the super-structure of language does he truely experience a "kaleidoscopic flux of impressions?" What must that be like? Temple Grandin writes of "thinking in pictures" -- is this what thought without the benefit of language is like? And what of abstract concepts like love, fear, anger and joy? What would they look like to Oliver?
Since I began this blog a few weeks ago I've learned that this language of ours can be grossly inadequate at times. I am not skilled enough to find the words to describe the nexus between sorrow and hope and love and anger where I come to rest many times throughout each day. Nor can it portray the complex emotions I feel when I see Oliver mastering a skill that brings him developmentally closer to his typical peers who learned the same without benefit of hours of therapy. So, upon reflection of language and autism, it seems ironic to me that this "kaleidoscopic flux" of emotion doesn't fit into any neatly arranged construct of language. But Oliver and I will keep looking for our words and I hope one day he can tell me what his look like.
We did forty hours when Charlie was just over 2. It seemed like too much and then it became the way it was, and he has needed such a "high level" of therapy ever since. Seeing him struggle to have language has inspired and emboldened my own writing and speaking (for him, for autism), and also made me profoundly aware of how language is only one way in which we communicate.
ReplyDeleteAnd yes, doing ABA/diet/biomedical feels like you are living in a constant lab situation---