During an appointment at the developmental pediatrician yesterday, she congratulated us twice for whatever it was that we did that finally worked. But I really believe that Oliver is now sleeping despite our best efforts. After years of struggling to honor what it seemed that Oliver needed at night -- to be comforted by human closeness -- while simultaneously managing to keep our physical, mental and emotional health in order, it feels as though we are finally, literally, at rest. Where once I had to lay with him, singing and soothing him to sleep, he now goes easily to sleep on his own. Where once I had a boy who could not fall back asleep if he awoke in the night -- who in fact often appeared to struggle to stay awake -- I now have a boy who seems eager to fall back asleep if awakened. All the manic energy during the day has gradually disappeared. The amazing appetite that belonged to a boy twice his size has become more moderate.
With all our new found energy, I've committed myself to teaching the boys how to read. They are both ready, I think. And Sami, for one, is eager. I bought a book: Montessori Read and Write, which I am finding is very compatible with the style of learning that I would like to foster -- developmentally appropriate and fun! I was surprised to find that Oliver and Sami both know about an equal number of letter sounds. And Oliver already knows how to spell about six words. This will be the first time I've tried to teach both kids something like this at the same time. It should be interesting and I hope not too frustrating. Based on our first couple of days I am guardedly optimistic. Wish us luck!
See these little discs? Know what they are? Well, let's just say they fall into the category of "Things I never thought I'd be doing as a mother."
Last week Oliver chipped a tooth. At first, I was nearly distraught. When he smiled it seemed half his front tooth was missing. And Oliver has a gorgeous smile. I wanted it fixed, like, right away. Could there be a bigger dental emergency? Unfortunately, the on-call dentist that Saturday didn't see it that way. And, I'll admit, the longer the weekend lasted the less catastrophic it seemed. By the time we got in to see our super-ultra-incredible dentist the following Wednesday it looked relatively minor -- just a small U-shaped chip.
Mr. incredibly wise dentist told me it wasn't worth fixing. The machine that files teeth down, apparently, is loud and vibrates. "Ultimately, we don't want him to be frightened about sitting in that chair." He was right and I knew it. But still! I wanted that perfect, beautiful smile back!! And when I mentioned this totally superficial sadness, Mr. Dentist said he had an idea. He then prepared for me a little envelope full of these snazzy sanding discs and showed me how I might gently file the edge of Oliver's tooth each day to give it a smoother appearance.
I'm quite certain I'm the only mom who ever walked out of the dentist office with sandpaper and a set of instructions for fixing a chipped tooth at home! But you know what? It's working. Nice and easy. A little at a time and no stress for mama or boy!
And I have one more skill to add to my expanding resume!!
then home again where I discovered that I am the featured contributor over at the Gravity Pulls You In site. If you haven't read the book yet, click on over and read all the excerpts from a pretty amazing collection of writing.
I'm not much of a joiner. I tend to shy away from groups and causes. I was once a girl scout and I joined a book club a few years back but I can't think of many other joiner-type activities that I've been involved in over the years. I did not join the Special Olympics drive to ban the r-word, either. At least not in the sense that I signed the petition. It isn't that I disagree with the concept. You know, let's all try not to use words that are hurtful to other people. I can get behind that. I can stand up for that in my everyday life. And that is what I think it will take: many people taking action in small ways in everyday life. The petition is nice because it awakens everyone to the need for conversation about the topic and I suppose that is as good a place to start as any. But for autism awareness day I also won't be posting on my blog with blue text or sending blue e-mails or wearing blue clothes. It isn't that I don't agree with the sentiment -- that people need to be more aware of autism, what it is, how it affects people -- it's just that I wonder what exactly it is that we are trying to accomplish with these efforts at awareness? Because awareness without knowledge and meaning doesn't make a lot of sense to me.
Along these same lines, I would like to know why, in the autism community, we haven't examined our own terminology a bit more because I think it impacts the message we are trying to get across. The whole campaign to 'ban the r-word' had me thinking about how we describe people with autism. In my last post I referred to what it felt like to have one's child on the receiving end of another descriptive term that I find equally objectionable. I can't imagine anybody, ever, feeling good about having themselves or their loved one referred to as "low-functioning." But I also can't tell you how many times I've heard a professional use it or how many times a parent has told me that his or her child is "high functioning." And every time I hear it I wonder why in the world one would choose to describe a child in terms of his functioning. How do these words influence our expectations for those individuals we are describing? And what does this language convey to someone who might not know a whole lot about autism? It seems to me that it somehow starts the discussion by putting the person with autism in the category of "other" and "different" in a way that has very little meaning. It doesn't exactly tell anybody anything useful as far as I can tell because it often does not reflect real world challenges that these individuals might face. I also find it incredibly de-humanizing. My refrigerator functions; my child lives, loves, laughs, is challenged, is creative, is playful, is silly, is persistent and cooperative. He is a brother and a son. He rides his bike better than most adults I know. He is incredibly easy going. He has a lot of anxiety. Communication does not come easily for him. Ask me how he functions and these are the things I'll tell you.
When I was in graduate school I took a linguistic anthropology class in which we studied how language and thought mutually influence one another. You see, it is very hard to figure out the chicken and the egg with respect to language and thought, but it is clear that each would remain fairly static without the other. Words and ideas shape each other. In terms of the r-word and now the f-word (functioning, that is, high and low), it is pretty clear to me that what needs to change is not just our use of these words but, importantly, the thinking that goes with the use of the words. So simply saying: "Don't use the r-word (or the f-word)," is not enough because it doesn't do much to change how people think about individuals with disabilities. And "Let's be aware of autism," also doesn't do enough to shape a person's thoughts about the issue. And that, my friends, is a tall order. If there were an awareness program that would help everyone to see that my son, and others like him, are full and complete beings, valuable to family and community, loved, loving and full of worth, then I would surely become a joiner.
In the meantime, I'll keep doing what I do every month, every day, of the year: I won't limit the opportunities I offer Oliver simply because he has autism. I will go with him everywhere our feet take us, even if I worry, even if it may be uncomfortable for Oliver, for myself, or for other people. I will keep trying to find our place in the world. I will talk to people about autism. I will talk to people about Oliver. I will use words that humanize, not pathologize. I will try, with my words and deeds to influence what people think about Oliver and about autism so that finding our place in the world won't be so bloody hard.
And I'll wear every color of the rainbow while I'm at it. It seems only right.
