I've got a question for all you smart people out there. Any idea why Oliver likes to live on the edge so much? I mean quite literally. If we go for a hike Oliver walks right on the edge of the path, usually one foot on the path and one in the weeds. If we walk along a sidewalk next to a wall, one shoulder is usually touching the wall. If he is sitting in a chair he is usually half on, half off. The same with the couch. He usually sleeps with one leg hanging off the side of the bed. ... and all of this is only worthy of mention because, well, he falls a lot. Out of chairs, especially. You'd think after falling out of a chair so many times he would learn to sit with his butt securely planted -- but no! There is something to the feeling of being. ... precarious, I guess -- that appeals to him. So anytime we go someplace with a ledge or water nearby, I am always a nervous wreck, waiting for the fall. Of course, he doesn't usually fall in those places, but given his generally clumsy nature I often worry and wonder why he always needs to be so close to the edge.
Opinions, anyone?
Wednesday, May 28, 2008
Tuesday, May 13, 2008
Changing Hearts and Minds
At the end of a long day today I suggested to Nik that we take the kids to the pool. It has been cold and rainy here and I didn't find the time or energy to take them outside all day so a bit of time swimming for them and the jacuzzi for me felt like just the ticket. It was crowded when we got there but soon the place cleared out and we had the wonderfully warm therapy pool all to ourselves. The kids were having a blast jumping and diving and Oliver especially liked squirting water through the newly acquired space in his lower line of teeth (This time I found the tooth!). All in all, we were feeling pretty good about ourselves as we ushered the kids to the steps of the jacuzzi before going to the locker room.
Sitting in the jacuzzi were familiar faces. The doctor with the heavy Vietnamese accent was someone Nik had consulted with before, plus his son and RT were on the same soccer team for many years. He is also a regular at the pool. Then there was another family -- two older kids and a Dad -- from Uruguay. Another lady, also a regular, from Brazil was there. When my Swiss husband sat down it felt a little festive even though we knew only the doctor by name. But the good doctor knew everyone and started the introductions. When he got to our family he started off by saying that Nik was Swiss and that I was "purely" American. And then, in the next breath he said: "And they have two children, the oldest one there has autism. You know autism? It's like he can't hear anything. And there is some trouble with the brain. ... It's like Rainman. You know Rainman?" Everyone shook their head "yes", and probably decided to let it drop if they had half a brain and could judge by the look on my face.
And here's the thing. I was upset but not as upset as I might have been. Yes, what this guy said was stupid. And very rude, considering that Oliver was sitting right there. But I honestly don't think Oliver was listening because the sensory experience of the jacuzzi is so great and because he really, really wanted to get back in the swimming pool. Also, the doctor was sitting a good 8 feet away from us. And I'm a cultural anthropologist for pete's sake. This guy has been in the US for quite some time and he is a doctor (well, a podiatrist), but his knowledge and understanding of autism (among other things) might have been formed in a cultural context so completely different from our own. And every other person in that jacuzzi probably knew and believed something different about autism. If they had all been Americans the very same thought would apply but I wonder if I would have been more outraged than I am. For some reason, after I caught my breath, I was more interested in thinking about the different levels of education, knowledge and varying belief systems and how this little bit of information, (yes, given in a really insensitive way) was being interpreted by them.
But what really upset me, more even than feeling like we had just been 'outed', was that given the time, place, and my company -- it didn't make sense to say anything to try and set the record straight. I mean: where would I begin? And there was 8 feet of bubbling water between the two of us and my two little ones who were already up past their bedtimes and badly wanting popsicles. But more than that -- I felt bad because I have so many powerful words to describe Oliver and autism just isn't one of them. And because there is SO MUCH misinformation out there and when the subject of autism does come up, there is no way to neatly package what I have to say on the subject into sound bites and yet I so badly DO want to change the way people think about it. Just like this doctor -- I'm sure he is a good person and is fully capable of changing his perspective. Isn't it part of my job to try? (I know some people will say that this guy was just plain rude and lacking in social graces. But one time when I lived in Thailand a guy was trying to give me a compliment and told me that I had big, beautiful thighs. This was the same guy who told me that I got so many mosquito bites because my big, white body made such an easy target for them. So I know that many, many things in life are culturally realitive!)
I guess the only thing I can really do is to talk when people are prepared to listen and to live a life that illustrates what I want people to know. Still, sometimes it just doesn't feel like enough, does it?
Sitting in the jacuzzi were familiar faces. The doctor with the heavy Vietnamese accent was someone Nik had consulted with before, plus his son and RT were on the same soccer team for many years. He is also a regular at the pool. Then there was another family -- two older kids and a Dad -- from Uruguay. Another lady, also a regular, from Brazil was there. When my Swiss husband sat down it felt a little festive even though we knew only the doctor by name. But the good doctor knew everyone and started the introductions. When he got to our family he started off by saying that Nik was Swiss and that I was "purely" American. And then, in the next breath he said: "And they have two children, the oldest one there has autism. You know autism? It's like he can't hear anything. And there is some trouble with the brain. ... It's like Rainman. You know Rainman?" Everyone shook their head "yes", and probably decided to let it drop if they had half a brain and could judge by the look on my face.
And here's the thing. I was upset but not as upset as I might have been. Yes, what this guy said was stupid. And very rude, considering that Oliver was sitting right there. But I honestly don't think Oliver was listening because the sensory experience of the jacuzzi is so great and because he really, really wanted to get back in the swimming pool. Also, the doctor was sitting a good 8 feet away from us. And I'm a cultural anthropologist for pete's sake. This guy has been in the US for quite some time and he is a doctor (well, a podiatrist), but his knowledge and understanding of autism (among other things) might have been formed in a cultural context so completely different from our own. And every other person in that jacuzzi probably knew and believed something different about autism. If they had all been Americans the very same thought would apply but I wonder if I would have been more outraged than I am. For some reason, after I caught my breath, I was more interested in thinking about the different levels of education, knowledge and varying belief systems and how this little bit of information, (yes, given in a really insensitive way) was being interpreted by them.
But what really upset me, more even than feeling like we had just been 'outed', was that given the time, place, and my company -- it didn't make sense to say anything to try and set the record straight. I mean: where would I begin? And there was 8 feet of bubbling water between the two of us and my two little ones who were already up past their bedtimes and badly wanting popsicles. But more than that -- I felt bad because I have so many powerful words to describe Oliver and autism just isn't one of them. And because there is SO MUCH misinformation out there and when the subject of autism does come up, there is no way to neatly package what I have to say on the subject into sound bites and yet I so badly DO want to change the way people think about it. Just like this doctor -- I'm sure he is a good person and is fully capable of changing his perspective. Isn't it part of my job to try? (I know some people will say that this guy was just plain rude and lacking in social graces. But one time when I lived in Thailand a guy was trying to give me a compliment and told me that I had big, beautiful thighs. This was the same guy who told me that I got so many mosquito bites because my big, white body made such an easy target for them. So I know that many, many things in life are culturally realitive!)
I guess the only thing I can really do is to talk when people are prepared to listen and to live a life that illustrates what I want people to know. Still, sometimes it just doesn't feel like enough, does it?
Friday, May 02, 2008
The Easy One
Oliver is the easy one. That's how we characterize our children at the moment. RT, of course, having just turned fifteen is in full teenager mode. He is sometimes sullen and withdrawn, he is occasionally argumentative, but mostly he is just on the go and we don't see him much except when he is asking for a ride somewhere. Or when he tells me at 8:30 pm on the way home from Karate that he needs to take guacamole in for a class the next day and we spend the next forty minutes driving to grocery stores looking for ripe avocados.
And Sami? He just wants to argue, debate and TALK about everything. EVERYTHING. Here is an almost verbatim dialog that he had with our neighbor tonight:
"Excuse me, Hannah? Well, thank you so much for this radish that I'm going to take home and put water on and slice up and eat tomorrow because, well, I really like radishes a lot."
"You like radishes?"
"Yes, I actually do like them a lot. And thank you for inviting us to come here and have dinner with you because you prolly didn't know this but I really also like those cheese crackers that you have over there. And, well, we have to go home now but we can come back tomorrow night if you have some more radishes for me to have."
Lately I've been resorting to requesting five minutes of silence: "Let's have five minutes of silence now because the trees are so pretty and we need to think about that a little bit. Without talking. OK?"
But Oliver? He is the easy one. He is usually very happy and full of life. He listens so well and is just happy to be doing what everyone else is doing. This is a real change from just a few years ago when everything was such a struggle, so we appreciate now how easy he is.
Unfortunately though it isn't always this way with Oliver and the last couple of days -- today especially -- have been a test. Why are the moments of explosive growth always followed by days like this? Yesterday and today were definitely filled with moments that didn't feel anything like growth. Oh yeah, these moments remind me, Oliver has autism. It's not that I forget, exactly, but I mostly just think of Oliver as Oliver. But yesterday, for example, he and I were in the front of the house enjoying the weather. I was pulling random weeds and Oliver was walking along the wall that runs along the sidewalk the length of three houses. Then, apropos of nothing, Oliver threw himself down on the sidewalk and started loudly crying. The neighbors were out on their stoops and all eyes were on us. Even though I love my neighborhood and know all of our neighbors, this made me a bit uncomfortable because I think we -- Oliver -- are sometimes the subject of talk amongst the old ladies on the block. I hate giving them more fodder. Anyway, when the crying began I moved in and sat down on the wall just a few feet from him and said softly: "Come in my lap sweetie and I'll give you a hug." So he did and it was all fine. But it wasn't fine because the next day and a half were punctuated with similar moments. The most frustrating thing about Oliver's lack of language is that I have no idea what is bothering him at moments like this. All I can do is soothe him with whispers and kisses and feel totally inadequate.
I know that children -- people, really -- can't be in a constant state of growth and development. They need time to internalize growth. But why does the swing of the pendulum have to be so dramatic?
On a happier note, however, tonight I received an early Mother's day gift. RT and my brother gave me a three person glider (that converts into a bed!) for the yard. I couldn't have been more surprised when they showed up and started building this thing in the backyard. They finished about a half hour ago -- at 11pm -- and it was so dark that they were looking for all the pieces by flashlight! If I remember tomorrow I'll take a picture and post it here.
And Sami? He just wants to argue, debate and TALK about everything. EVERYTHING. Here is an almost verbatim dialog that he had with our neighbor tonight:
"Excuse me, Hannah? Well, thank you so much for this radish that I'm going to take home and put water on and slice up and eat tomorrow because, well, I really like radishes a lot."
"You like radishes?"
"Yes, I actually do like them a lot. And thank you for inviting us to come here and have dinner with you because you prolly didn't know this but I really also like those cheese crackers that you have over there. And, well, we have to go home now but we can come back tomorrow night if you have some more radishes for me to have."
Lately I've been resorting to requesting five minutes of silence: "Let's have five minutes of silence now because the trees are so pretty and we need to think about that a little bit. Without talking. OK?"
But Oliver? He is the easy one. He is usually very happy and full of life. He listens so well and is just happy to be doing what everyone else is doing. This is a real change from just a few years ago when everything was such a struggle, so we appreciate now how easy he is.
Unfortunately though it isn't always this way with Oliver and the last couple of days -- today especially -- have been a test. Why are the moments of explosive growth always followed by days like this? Yesterday and today were definitely filled with moments that didn't feel anything like growth. Oh yeah, these moments remind me, Oliver has autism. It's not that I forget, exactly, but I mostly just think of Oliver as Oliver. But yesterday, for example, he and I were in the front of the house enjoying the weather. I was pulling random weeds and Oliver was walking along the wall that runs along the sidewalk the length of three houses. Then, apropos of nothing, Oliver threw himself down on the sidewalk and started loudly crying. The neighbors were out on their stoops and all eyes were on us. Even though I love my neighborhood and know all of our neighbors, this made me a bit uncomfortable because I think we -- Oliver -- are sometimes the subject of talk amongst the old ladies on the block. I hate giving them more fodder. Anyway, when the crying began I moved in and sat down on the wall just a few feet from him and said softly: "Come in my lap sweetie and I'll give you a hug." So he did and it was all fine. But it wasn't fine because the next day and a half were punctuated with similar moments. The most frustrating thing about Oliver's lack of language is that I have no idea what is bothering him at moments like this. All I can do is soothe him with whispers and kisses and feel totally inadequate.
I know that children -- people, really -- can't be in a constant state of growth and development. They need time to internalize growth. But why does the swing of the pendulum have to be so dramatic?
On a happier note, however, tonight I received an early Mother's day gift. RT and my brother gave me a three person glider (that converts into a bed!) for the yard. I couldn't have been more surprised when they showed up and started building this thing in the backyard. They finished about a half hour ago -- at 11pm -- and it was so dark that they were looking for all the pieces by flashlight! If I remember tomorrow I'll take a picture and post it here.
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