One thing I have trouble determining is the extent to which Oliver's behaviors are a manifestation of his autism or if they are just a normal part of being a three-year old boy. At the same time I know I shouldn't try to dissect him. He is a whole person. And he has autism. He is simply Oliver being Oliver. And yet none of those who have evaluated him to date have given me any indication of where he falls on the spectrum. And I haven't had the courage to ask. Knowing the answer to this would probably give me the false impression that I have some idea of what to expect for the future. None of us can know this but that doesn't stop me from wishing I had a crystal ball.
When we were first going through the diagnosis process each new specialist asked the same range of questions and I always found it difficult to answer accurately.
"Does he like to line up objects?"
"Yes. But he also likes to stack, throw, and hide things."
"Does he like to spin?"
"Yes. But he most loves it when his older brother spins him. Then he gets dizzy and falls down, laughing. He hasn't used his sit-and-spin in a long time.
So the answer to both of these questions went down as "Yes" even though I'm pretty sure that he doesn't spin or line things up more or less than any other three year old. One of his therapists once remarked to me that she was surprised that Oliver didn't have any stereotypical autistic behaviors. And, while it is true that he doesn't hand-flap or walk on his toes, I don't think it would be hard for someone who is familiar with autism to pick him out of a crowd of other kids. In fact, in a crowd it would be especially easy.
The reason I bring this up is because I sometimes have trouble knowing what to overlook and what needs attention. For example: Oliver has been eating with utensils since he was 11 months old but over the last 3-4 months he has stopped using his fork and prefers now to eat with his fingers. Is he losing a skill? Should I insist that he use the fork? In the evenings, sometimes, he will run aroud and around the play room until I catch him and tickle him. Is he using this activity to get his bearings when he is too tired to focus on anything or does he like the game of being caught and tickled? In bed at night he loves making shapes with his hand when it is back-lit by the hall light. Are these the same hand puppets that I made as a kid? It is hard to say, and I'm not even really sure it matters, except that I wish I had a better sense of the challenges that he will face.
I don't know if the picture will ever be clear or that I'll ever stop wishing I had a crystal ball. For the moment, though I suppost the important thing is to concentrate on helping him have the best today that he can have -- which, when you come right down to it, is about one part work and three parts pleasure. Which doesn't sound so bad in the scheme of things.
Tuesday, November 29, 2005
Tuesday, November 22, 2005
New Team Roster
Autism is a Pervasive Developmental Delay. Pervasive being the word that I get hung up on a lot. Trying to figure out how to address Oliver's needs when they are so all-encompassing can be overwhelming. Where do you start? Especially because the clock is ticking. I am constantly aware of the days passing that bring us closer to kindergarten. But I lean heavily on the advice of Oliver's teacher and his lead therapist who both have a lot of experience and are very caring. I also ask a lot of questions of all his therapists. And I constantly scan the internet for reviews, reports, studies and documentation. As much as possible I think we are on top of things and just the other day Nik and I were talking about how we managed to hit the ground running and that things don't seem as hard as we initially envisioned they would be.
Then I got a call from the Occupational Therapist who works at the school. She was very nice, sounding both professional and compassionate at once. She had been observing Oliver for the past several weeks and she wanted to add an OT addendum to the IEP. She told me that her evaluation of Oliver put him at about 24 months for fine motor skills, that he was about a year behind and that she would really like to work with him. I participated in the conversation after that but my mind really got stuck on that last part.
About a year behind.
I had been thinking that all things physical were among Oliver's strengths. But apparently not. Further conversation with her informed me that OT is about more than fine motor skills. She will address issues of play and sensory stimulation and all that is well and good; I knew it was part of the autism package. But hearing that there is yet another area where he has fallen behind was depressing as hell.
Add another member to Team Oliver. And some new words to the vocabulary.
Don't people get degrees in this sort of thing? I feel like I should go back to school. But there is no time for that so Oliver and I will have to learn as we go.
Luckily we are both fast and motivated learners.
Then I got a call from the Occupational Therapist who works at the school. She was very nice, sounding both professional and compassionate at once. She had been observing Oliver for the past several weeks and she wanted to add an OT addendum to the IEP. She told me that her evaluation of Oliver put him at about 24 months for fine motor skills, that he was about a year behind and that she would really like to work with him. I participated in the conversation after that but my mind really got stuck on that last part.
About a year behind.I had been thinking that all things physical were among Oliver's strengths. But apparently not. Further conversation with her informed me that OT is about more than fine motor skills. She will address issues of play and sensory stimulation and all that is well and good; I knew it was part of the autism package. But hearing that there is yet another area where he has fallen behind was depressing as hell.
Add another member to Team Oliver. And some new words to the vocabulary.
Don't people get degrees in this sort of thing? I feel like I should go back to school. But there is no time for that so Oliver and I will have to learn as we go.
Luckily we are both fast and motivated learners.
Thursday, November 17, 2005
A Mother-in-Progress
I came to motherhood slowly. I don't mean to say that it took me a long time to decide to become a mother (it did) or that I was pregnant for an extra long period of time (it only seemed that way) but that I didn't feel like a mother once I had my cute little warm bundle of joy in my arms. At least my version of motherhood didn't quite match what I'd read it would be. I once confided to an on-line group of friends that I didn't "love" the fetus that became Oliver when I was pregnant. I was really interested by it. And I was amazed by it. But that isn't the same thing, is it? In the instant before I hit the submit button I felt sure that someone -- probably a bunch of people -- would reply and tell me that they felt the same way. Instead I got a lot of awkward cyber silence. Also, once he was born I wasn't quite sure what to think of him. Did I love him? Yes. I think so -- but I didn't really know him all that well. Oh sure, he was cute alright. And after I returned to work I couldn't wait to get home to him every night and then I was disappointed that he went to sleep so early. I doted on him and was a complete believer in attachment parenthood: co-sleeping, sling-wearing, extended breastfeeding, the works. But I would say that it took me a good 15 months before it really occurred to me that I would absolutely curl up and die if anything bad ever happened to him. So that's what I mean when I say that I came to motherhood slowly.
Now some who are reading this might think that I had trouble bonding with the little guy because I intuitively knew that there was something amiss. Or maybe that something about Oliver prevented me from connecting with him -- there's that mistaken idea that children with autism can't show affection. But Oliver was as perfect and normal as can be; there was nothing wrong with him. I just didn't instantaneously upon seeing him know that I would throw myself in front of a truck to save him. At least I was glad that wasn't part of the test because I really just didn't know. It took me about a year or so before I knew that I wouldn't even have to think about it. You see, it's not that I didn't love him or that we didn't share a bond but rather that the intensity of both things grew fantastically over the first year of his life. That's what I mean when I say that I came to motherhood slowly.
I would say that I am one of the more self-absorbed, self-referential people I know. Especially lately (As evidenced by this post in a blog about Oliver that is all about ME). And so when Oliver was first born I had a lot of trouble adjusting to the fact that I just didn't come first anymore. Not even with myself. That first year of adjustment was hard. I even had trouble finding the time to brush my teeth. And then there was my job. I am lucky enough to have an exciting, challenging, interesting job that pays great and allows me to work with a fantastic group of people. But suddenly I couldn't devote myself to my career 100%. That was the biggest challenge of new motherhood for me: finding a balance between the time and energy I spent on Oliver and on my job. And sometimes, like when I had to turn down trips to exciting, far-flug places because I was still breastfeeding, I felt a little resentful and wondered if I was really cut out to be a mother.
After Oliver, however, I went on to have Sam and that tells you that there were things about Motherhood that I wouldn't trade for all of the world. But it occurred to me the other day that until a point very recently, I always thought of them as my children. The emphasis was on their relationship to me. I began to see that I had wanted children in much the same way as I wanted other things in my life. I wanted them because I wanted my life to be a certain way. When I grow old I had hoped to be surrounded by my children and grandchildren. Having a child with a disability never really entered the equation. The revelation about Oliver's individuality came to me after his diagnosis when I really began to see him for the rather remarkable little person that he is. The revelation also brought with it an element of sadness because it came with the knowledge that I don't understand how he experiences things. I read a lot and I can guess, but I will never really know. The fact that I had, until that time, thought of Oliver as almost an extension of myself, for good or bad, speaks to the depth of our bond. This shift in my perception of him has been seismic.
One day last week I decided to quit my job after thinking about it for about, oh, five minutes. Pay, benefits, professional accomplishment -- all that I held to be so important up until August hardly factored into the decision. My son needs me more than I need all those things times ten. It isn't exactly the same as throwing myself into the path of an oncoming truck to save my son but it is something I thought to be unthinkable when I gave birth to him three years ago.
Someone I know recently told me that she thinks of herself as a mother-in-progress and it helps me to view my own journey in such a light. Because, you see, I came to motherhood slowly and at times I didn't embrace it as much as I could have. But every day now I see that I have another opportunity. And luckily Oliver, my little guy who is so much a part of me but also so very much his own person, is supremely accepting.
Now some who are reading this might think that I had trouble bonding with the little guy because I intuitively knew that there was something amiss. Or maybe that something about Oliver prevented me from connecting with him -- there's that mistaken idea that children with autism can't show affection. But Oliver was as perfect and normal as can be; there was nothing wrong with him. I just didn't instantaneously upon seeing him know that I would throw myself in front of a truck to save him. At least I was glad that wasn't part of the test because I really just didn't know. It took me about a year or so before I knew that I wouldn't even have to think about it. You see, it's not that I didn't love him or that we didn't share a bond but rather that the intensity of both things grew fantastically over the first year of his life. That's what I mean when I say that I came to motherhood slowly.
I would say that I am one of the more self-absorbed, self-referential people I know. Especially lately (As evidenced by this post in a blog about Oliver that is all about ME). And so when Oliver was first born I had a lot of trouble adjusting to the fact that I just didn't come first anymore. Not even with myself. That first year of adjustment was hard. I even had trouble finding the time to brush my teeth. And then there was my job. I am lucky enough to have an exciting, challenging, interesting job that pays great and allows me to work with a fantastic group of people. But suddenly I couldn't devote myself to my career 100%. That was the biggest challenge of new motherhood for me: finding a balance between the time and energy I spent on Oliver and on my job. And sometimes, like when I had to turn down trips to exciting, far-flug places because I was still breastfeeding, I felt a little resentful and wondered if I was really cut out to be a mother.
After Oliver, however, I went on to have Sam and that tells you that there were things about Motherhood that I wouldn't trade for all of the world. But it occurred to me the other day that until a point very recently, I always thought of them as my children. The emphasis was on their relationship to me. I began to see that I had wanted children in much the same way as I wanted other things in my life. I wanted them because I wanted my life to be a certain way. When I grow old I had hoped to be surrounded by my children and grandchildren. Having a child with a disability never really entered the equation. The revelation about Oliver's individuality came to me after his diagnosis when I really began to see him for the rather remarkable little person that he is. The revelation also brought with it an element of sadness because it came with the knowledge that I don't understand how he experiences things. I read a lot and I can guess, but I will never really know. The fact that I had, until that time, thought of Oliver as almost an extension of myself, for good or bad, speaks to the depth of our bond. This shift in my perception of him has been seismic.
One day last week I decided to quit my job after thinking about it for about, oh, five minutes. Pay, benefits, professional accomplishment -- all that I held to be so important up until August hardly factored into the decision. My son needs me more than I need all those things times ten. It isn't exactly the same as throwing myself into the path of an oncoming truck to save my son but it is something I thought to be unthinkable when I gave birth to him three years ago.
Someone I know recently told me that she thinks of herself as a mother-in-progress and it helps me to view my own journey in such a light. Because, you see, I came to motherhood slowly and at times I didn't embrace it as much as I could have. But every day now I see that I have another opportunity. And luckily Oliver, my little guy who is so much a part of me but also so very much his own person, is supremely accepting.
Wednesday, November 16, 2005
Who Would Have Thought?
Who would have thought that I could get so excited over a nice, solid poop? After 14 days on the diet Oliver had his first solid BM. I won't say it is his first ever, but certainly it is one of very few over the past year and a half.
Do you think this post is one of those things that will embarrass the heck out of him when he gets to teenager-dom?
Do you think this post is one of those things that will embarrass the heck out of him when he gets to teenager-dom?
Tuesday, November 15, 2005
All Modesty Aside
Have I said lately how impressive Oliver is? Well, all modesty aside, I believe he is one of the most impressive people I know. While he may have drawn the short stick in the genetic lottery of autism he clearly has inherited some pretty remarkable traits that I doubt came from my side of things. I am in awe of this little boy with his mischevious smile that goes all the way to his eyes. And I am humbled by his good nature. Everyday I am thoroughly impressed by our little Oliver.
Yesterday, for example, L:indsey had just arrived and we were sitting in the kitchen and I was trying to feed Sam and peel an orange for Oliver. Mindful that I should be eliciting requests from Oliver whenever possible and that orange slices are highly motivating, I withheld a slice trying to get him to request it. "I want Orange" is a phrase that he has been using quite a bit these days so I reasonably expected that he would comply. Holding the slice out of reach I modeled the request. "Do you want the orange, Oliver?" then "Yes, I want the Orange." But as is so often the case Oliver seemed to lose interest when a demand was placed on him and he raced into the next room while I continued my conversation with Lindsey about the day's therapy. Then, much to our shock and amazement, Oliver returned to the kitchen and placed a PECs icon in my hand indicating that he wanted the Orange. Now, for those who don't know about PECs, that is huge. He was motivated enough to get the orange that he left the room, found the icon and returned to give it to me! That means that he understands the concept of requesting items by using a picture to let us know what he wants. I noted in an earlier post that Oliver doesn't appear to have a processing problem with regard to speech but rather that he isn't motivated to use words. He hasn't figured out yet that communication can be rewarding. The first step in teaching this is to show that a request will be gratified. So when Oliver raced to find his icon he was demonstrating that he now understands that most basic of principles.
I have often worried that we are teaching Oliver to communicate using pictures when what I really want is for him to speak. It has been found that verbal abilities increase by teaching a child the principles of communication using the picture system. But I still need constant reassurance from his therapists and I continually search the internet for documentation. It seems so counter-intuitive. But when Oliver presented me with that icon I knew that something had "clicked" with him and that one little act reminded me of his boundless potential. These are the things that keep us going.
I sent my rather impressive little boy on the bus to school today wearing plaid pants and a striped shirt. Now you may wonder why I would want to do that to a little boy who clearly has some disadvantages in life already. Well, I did it because those are the clothes that Oliver chose to wear. For the last couple of months we have been working on dressing skills and now I'm pretty satisfied that Oliver can mostly dress himself as well as other three year olds. Now we are working on making choices. When presented with two things and asked to choose Oliver will normally just not do anything. He will stare off to one side and not move. So in the morning when it is time to dress I say: "Oliver, let's go downstairs and have our Yummy Cake. But first let's get dressed." With the promise of his yummy-almond-flour-muffin ahead, he is motivated to get dressed in a hurry. On the floor in front of him will be two shirts and two pairs of pants. It is up to him which ones to wear. I'm pretty sure that he just grabs one or the other without giving a thought to choice, but this morning he changed his mind mid-shirt. He actually stopped putting on the first one, took it off and picked up the other saying, "shirt." The aesthetic side of me groaned a little bit but as he scrambled down the stairs for his muffin I couldn't have been more proud.
He just impresses the heck out of me.
We'll save the lesson on color coordination for another day.
Yesterday, for example, L:indsey had just arrived and we were sitting in the kitchen and I was trying to feed Sam and peel an orange for Oliver. Mindful that I should be eliciting requests from Oliver whenever possible and that orange slices are highly motivating, I withheld a slice trying to get him to request it. "I want Orange" is a phrase that he has been using quite a bit these days so I reasonably expected that he would comply. Holding the slice out of reach I modeled the request. "Do you want the orange, Oliver?" then "Yes, I want the Orange." But as is so often the case Oliver seemed to lose interest when a demand was placed on him and he raced into the next room while I continued my conversation with Lindsey about the day's therapy. Then, much to our shock and amazement, Oliver returned to the kitchen and placed a PECs icon in my hand indicating that he wanted the Orange. Now, for those who don't know about PECs, that is huge. He was motivated enough to get the orange that he left the room, found the icon and returned to give it to me! That means that he understands the concept of requesting items by using a picture to let us know what he wants. I noted in an earlier post that Oliver doesn't appear to have a processing problem with regard to speech but rather that he isn't motivated to use words. He hasn't figured out yet that communication can be rewarding. The first step in teaching this is to show that a request will be gratified. So when Oliver raced to find his icon he was demonstrating that he now understands that most basic of principles.
I have often worried that we are teaching Oliver to communicate using pictures when what I really want is for him to speak. It has been found that verbal abilities increase by teaching a child the principles of communication using the picture system. But I still need constant reassurance from his therapists and I continually search the internet for documentation. It seems so counter-intuitive. But when Oliver presented me with that icon I knew that something had "clicked" with him and that one little act reminded me of his boundless potential. These are the things that keep us going.
I sent my rather impressive little boy on the bus to school today wearing plaid pants and a striped shirt. Now you may wonder why I would want to do that to a little boy who clearly has some disadvantages in life already. Well, I did it because those are the clothes that Oliver chose to wear. For the last couple of months we have been working on dressing skills and now I'm pretty satisfied that Oliver can mostly dress himself as well as other three year olds. Now we are working on making choices. When presented with two things and asked to choose Oliver will normally just not do anything. He will stare off to one side and not move. So in the morning when it is time to dress I say: "Oliver, let's go downstairs and have our Yummy Cake. But first let's get dressed." With the promise of his yummy-almond-flour-muffin ahead, he is motivated to get dressed in a hurry. On the floor in front of him will be two shirts and two pairs of pants. It is up to him which ones to wear. I'm pretty sure that he just grabs one or the other without giving a thought to choice, but this morning he changed his mind mid-shirt. He actually stopped putting on the first one, took it off and picked up the other saying, "shirt." The aesthetic side of me groaned a little bit but as he scrambled down the stairs for his muffin I couldn't have been more proud.
He just impresses the heck out of me.
We'll save the lesson on color coordination for another day.
Saturday, November 12, 2005
Autism Is A World
Oliver is just pretty damn impressive.
On Friday, Lindsey told me that he has been he has been initiating play with other children fairly regularly at school. He has also graduated to Phase II of PECs. He has worked through his trouble using the visual schedule and now mostly complies without needing to be wrestled to the thing. He is taking more and more interest in his little brother. The phrase we hear him most often repeating is: "It's a baby!" His tantrums have become rather infrequent (although we had a doozy on Friday night but I will attribute that to one over-tired little boy) . A certain disturbing behavior involving a bodily function hasn't occurred in a week. And tonight he ate baked fish and zuchinni creole for dinner! Every last bite of it. And then after his bath he said, "I want to go to sleep, " took my hand and led me to the stairs.
Mid-afternoon we went to the park to help a dear friend of mine celebrate the birthday of her daughter. Her little girl was born just a few months after Oliver and we had enjoyed our pregnancies together. When our kids were both a few months old we used to spread a blanket close-by to the kids castle playground and watch the children run and play while our own infants chewed and drooled on everything in sight. Those were in the days before I could imagine that a thing like autism could change everything about the present and the future. Oliver did great at the playground but due to the unseasonably warm weather there were a lot of kids climbing around and so while I tried to interest him in playing his only thoughts were on escaping. Time after time I caught him and pulled him back to a slide or swing. Finally, we compromised and I let him play in the pea gravel off to one side. I was feeling pretty bad about things as I watched him repeatedly bury his hand in the rocks against the soundtrack of the shouts and laughter of the other kids. I never see his disability as acutely as I do when there are typical kids around. But fairly soon the other kids came to rest next to Oliver and they played in the rocks side-by-side. Of course they were all playing together and Oliver was in his own little world -- but at least he didn't seem so all alone.
When we got home from the park Nik asked how it went and I reported that Oliver did great. And he really did. Even though he tried repeatedly to escape he was easily redirected. He transitioned well from place to place. And he smiled that killer smile that melts my heart. So Oliver did great. It's just his mom that has a little trouble from time to time.
After the kids went to sleep we settled on the couch to watch the documentary, "Autism is a World" about 26-year old Sue Rubin, a completely non-verbal autistic woman. This impressive woman was thought to be mentally retarded until the age of 13 when she began to communicate using a keyboard. Now she is a Junior in college and has an IQ of 140. The documentary was very good and the tale it told about this young woman was inspiring. But I couldn't help wonder what percentage of the autism population she represents. Autism is a spectrum disorder, which means that every person presents differently -- the World of Autism for Sue Rubin is probably very different than the World of Autism for Oliver.
But today everything in our little World was good: Oliver is making incredible strides, we got a mid-November dose of fresh air, and the kids were both in bed and asleep by 7pm giving me a bit of time to write here and to read the other autism blogs that keep make me feel a part of the Constellation.
On Friday, Lindsey told me that he has been he has been initiating play with other children fairly regularly at school. He has also graduated to Phase II of PECs. He has worked through his trouble using the visual schedule and now mostly complies without needing to be wrestled to the thing. He is taking more and more interest in his little brother. The phrase we hear him most often repeating is: "It's a baby!" His tantrums have become rather infrequent (although we had a doozy on Friday night but I will attribute that to one over-tired little boy) . A certain disturbing behavior involving a bodily function hasn't occurred in a week. And tonight he ate baked fish and zuchinni creole for dinner! Every last bite of it. And then after his bath he said, "I want to go to sleep, " took my hand and led me to the stairs.
Mid-afternoon we went to the park to help a dear friend of mine celebrate the birthday of her daughter. Her little girl was born just a few months after Oliver and we had enjoyed our pregnancies together. When our kids were both a few months old we used to spread a blanket close-by to the kids castle playground and watch the children run and play while our own infants chewed and drooled on everything in sight. Those were in the days before I could imagine that a thing like autism could change everything about the present and the future. Oliver did great at the playground but due to the unseasonably warm weather there were a lot of kids climbing around and so while I tried to interest him in playing his only thoughts were on escaping. Time after time I caught him and pulled him back to a slide or swing. Finally, we compromised and I let him play in the pea gravel off to one side. I was feeling pretty bad about things as I watched him repeatedly bury his hand in the rocks against the soundtrack of the shouts and laughter of the other kids. I never see his disability as acutely as I do when there are typical kids around. But fairly soon the other kids came to rest next to Oliver and they played in the rocks side-by-side. Of course they were all playing together and Oliver was in his own little world -- but at least he didn't seem so all alone.
When we got home from the park Nik asked how it went and I reported that Oliver did great. And he really did. Even though he tried repeatedly to escape he was easily redirected. He transitioned well from place to place. And he smiled that killer smile that melts my heart. So Oliver did great. It's just his mom that has a little trouble from time to time.
After the kids went to sleep we settled on the couch to watch the documentary, "Autism is a World" about 26-year old Sue Rubin, a completely non-verbal autistic woman. This impressive woman was thought to be mentally retarded until the age of 13 when she began to communicate using a keyboard. Now she is a Junior in college and has an IQ of 140. The documentary was very good and the tale it told about this young woman was inspiring. But I couldn't help wonder what percentage of the autism population she represents. Autism is a spectrum disorder, which means that every person presents differently -- the World of Autism for Sue Rubin is probably very different than the World of Autism for Oliver.
But today everything in our little World was good: Oliver is making incredible strides, we got a mid-November dose of fresh air, and the kids were both in bed and asleep by 7pm giving me a bit of time to write here and to read the other autism blogs that keep make me feel a part of the Constellation.
Monday, November 07, 2005
On Kaleidoscopic Flux
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.
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.
Sunday, November 06, 2005
Not Quite Science
The sleeping silence of our home was broken last night at about 1:30am -- earlier than usual -- by the sound of Oliver screaming. It was the kind of scream that every parent is familiar with, it is the scream that usually means "I've fallen off the couch and broken my arm." Or, "I fell down the stairs and now I probably have a concussion." But with Oliver the scream comes in the dead of the night, usually around 3am, and we have grown accustomed to bolting out of bed, rushing to comfort him. So at 1:30 last night I sat rocking my boy while sitting on the edge of his toddler bear-bed, making soothing sounds, while also trying to restrain flailing arms and legs that hit out at me and escape his lunging bite. It is hard not to be upset by these episodes because it is both difficult to witness and because emotion comes more quickly to the surface when you are jarred from the deepest part of sleep.
Nik and I feel as though we are night-time veterans. Oliver never slept through the night until he was 2.5 years old, often waking two, three, or more times in the night. For awhile we went through these particularly intense screaming episodes almost every night. But then he started sleeping; miraculously sleeping. As week after week went by we allowed ourselves to relax a little bit more into a full night of sleep. This week, however, he has awoken in screams four nights out of six.
Is it a coincidence that we changed his diet at the same time he started waking in the night again? What else has changed? I can't think of a single thing. But last week also saw a few wonderful "firsts" -- on Wednesday at school Oliver initiatied play with other children 5 different times. On Thursday night Oliver initiated and sustained play with his baby brother for the first time ever. For more than seven months we had waited for him to acknowledge Sam and on Thursday suddenly there he was cooing at the baby and lavishing him with hugs and tickles. That same night he seemed to focus on his play activities and at one point he looked up from his building blocks and said: "I'm happy." I wasn't certain I heard right but then I asked him "What?" and he repeated himself: "I'm happy." So I told him, "I'm happy, too, Oliver." And I'm not sure I ever uttered a statement that was more true.
This whole theraputic program -- the ABA, the diet, the bio-medical approaches -- feels like a giant experiment. We add a little of this, a little of that and then watch for changes, good and bad. But unlike a proper scientific study nothing with our children happens in isolation. Oliver wakes up screaming or has a burst of language and there is no way to know for sure if it is related, and how, to any other event. Maybe it is all just coincidence.
After the incident in the night, Oliver slept soundly until 7am and then went on to have a fantastic day. We played and laughed, spent a lot of time outdoors in the unseasonably warm weather and even went swimming. Oliver also did many PECs exchanges, all of the independant and most of them without a fuss. And at meal times I marveled at what a good eater he is. I know that many parents of children like Oliver struggle to get their children to eat a variety of foods but that has never been the case with him and it makes implementing this diet much more bearable.
As the evening fell I could tell our little one was exhausted by his rosey cheeks and red ears.
Around 7:00 Oliver led the way, "I want to go to sleep." My attempt to read Green Eggs and Ham was unceremoniously halted when the boy closed the book saying: "The End!" and rolled over to face the wall. And he was asleep before the lights were out.
Nik and I feel as though we are night-time veterans. Oliver never slept through the night until he was 2.5 years old, often waking two, three, or more times in the night. For awhile we went through these particularly intense screaming episodes almost every night. But then he started sleeping; miraculously sleeping. As week after week went by we allowed ourselves to relax a little bit more into a full night of sleep. This week, however, he has awoken in screams four nights out of six.
Is it a coincidence that we changed his diet at the same time he started waking in the night again? What else has changed? I can't think of a single thing. But last week also saw a few wonderful "firsts" -- on Wednesday at school Oliver initiatied play with other children 5 different times. On Thursday night Oliver initiated and sustained play with his baby brother for the first time ever. For more than seven months we had waited for him to acknowledge Sam and on Thursday suddenly there he was cooing at the baby and lavishing him with hugs and tickles. That same night he seemed to focus on his play activities and at one point he looked up from his building blocks and said: "I'm happy." I wasn't certain I heard right but then I asked him "What?" and he repeated himself: "I'm happy." So I told him, "I'm happy, too, Oliver." And I'm not sure I ever uttered a statement that was more true.This whole theraputic program -- the ABA, the diet, the bio-medical approaches -- feels like a giant experiment. We add a little of this, a little of that and then watch for changes, good and bad. But unlike a proper scientific study nothing with our children happens in isolation. Oliver wakes up screaming or has a burst of language and there is no way to know for sure if it is related, and how, to any other event. Maybe it is all just coincidence.
After the incident in the night, Oliver slept soundly until 7am and then went on to have a fantastic day. We played and laughed, spent a lot of time outdoors in the unseasonably warm weather and even went swimming. Oliver also did many PECs exchanges, all of the independant and most of them without a fuss. And at meal times I marveled at what a good eater he is. I know that many parents of children like Oliver struggle to get their children to eat a variety of foods but that has never been the case with him and it makes implementing this diet much more bearable.
As the evening fell I could tell our little one was exhausted by his rosey cheeks and red ears.
Around 7:00 Oliver led the way, "I want to go to sleep." My attempt to read Green Eggs and Ham was unceremoniously halted when the boy closed the book saying: "The End!" and rolled over to face the wall. And he was asleep before the lights were out.
Wednesday, November 02, 2005
If You Are What You Eat Then I'm a Nut
Today is the 2nd full day of our new diet and I'm already thinking of ways to cheat. I have never been able to stick to a diet. I'm usually not disciplined or organized enough to follow through. But this time I swear I will do a better job. And with more at stake than an extra ten pounds I believe I will.
We've decided to go on the Specific Carbohydrate Diet which eliminates certain carbohydrates and all those containing gluten. An order of almond flour (at 6.50/lb thankyouverymuch), which will replace all of our grains, arrived at our doorstep yesterday and I spent a few hours last evening learning the art of cooking with this mysterious (but surprisingly tasty) substance. I made bread that was the consistency of pound cake and cinnamon cookies for Oliver's lunch. For breakfast I toasted it and for lunch I peanut buttered and honeyed it. And since I don't feel like cooking much tonight I will probably grill-cheese it! I also spent some hours trolling the internet for Dry Curd Cottage Cheese, bought the starter for homemade yogurt and some fennel for making sausage! I am on my way. I am motivated. I am exhausted!
But the important thing is that Oliver likes it so far and it makes me feel like I am contributing to his wellness.
Wish us luck!
We've decided to go on the Specific Carbohydrate Diet which eliminates certain carbohydrates and all those containing gluten. An order of almond flour (at 6.50/lb thankyouverymuch), which will replace all of our grains, arrived at our doorstep yesterday and I spent a few hours last evening learning the art of cooking with this mysterious (but surprisingly tasty) substance. I made bread that was the consistency of pound cake and cinnamon cookies for Oliver's lunch. For breakfast I toasted it and for lunch I peanut buttered and honeyed it. And since I don't feel like cooking much tonight I will probably grill-cheese it! I also spent some hours trolling the internet for Dry Curd Cottage Cheese, bought the starter for homemade yogurt and some fennel for making sausage! I am on my way. I am motivated. I am exhausted!
But the important thing is that Oliver likes it so far and it makes me feel like I am contributing to his wellness.
Wish us luck!
Tuesday, November 01, 2005
Happy Halloween
"Oliver?"
"Oliver! Look over here. O-li-ver. ... Oliver!"
"Oliver, leave the hat on and look over here for one second so I can take your picture and I'll let you eat every single piece of candy in that bucket!"
I didn't worry too much about making good on that last promise because the chances of Oliver actually looking at me when I call his name are slim to none. I did manage to get a couple of photos of him in his make-shift costume (whirly hat and suspenders) but only because I was very persistant.
As we walked from house to house last night with Oliver, who had been thoroughly coached on the nuances of trick-or-treating, I reflected a little bit on motherhood. Oliver, you see, wasn't too interested in this particular ritual of childhood and I had to really talk myself out of being disappointed. Before we even approached the first house he started a chorus of "no, no, no, no," tried to break free and return home. I persisted though thinking that once he got the concept he would become a little less resistant and maybe even enjoy himself. I partially got my wish -- he did become a little less resistant but I'm not sure he ever really enjoyed himself.
So much of my concept of motherhood involves wanting to give and to teach my children the things that I think are meaningful and important; sharing with them a way of looking at and thinking about the world. Helping your child discover the world is one of the rewards of motherhood, after all. With Oliver the process of discovery is very subtle and comes with the extra challenge of persistance. A few weeks ago I sat on the front porch in the early October sunshine while Oliver stomped back and forth making loud noises and generally entertaining himself. A hummingbird happened by the remains of the garden close to the porch and I quickly tried to get his attention so that I could point out the bird. This became an exercise in frustration because it is nearly impossible to get Oliver's attention by shouting or calling and because he is not able to follow the path between fingertip and object. By the time I physically positioned Oliver in a location by the rail where he might be likely to spot the fast moving bird on his own, it had gone. I released Oliver back to his stomping and tried to quell my own sense of disappointment at not being able to share the excitemnt with my son. A few minutes later a grasshopper landed on the step next to me and I didn't bother going through the whole routine again. And I felt guilty for not trying.
When we arrived home last night after our short excursion into the night I tried mightily to get a picture of the boy with his costume and then to interest him in a piece of chocolate. As he pulled away, not interested in either the picture or the chocolate, I reminded myself that my growing sense of sadness at the way the evening had turned out was only due to my own notions about what motherhood and childhood should be -- the mistaken belief that the context of being a mother and of being a child is what matters.
The evening ended on a high note when Oliver came to me and said: "I want to go to sleep." This is the second night out of four when he has told us that he was tired and wanted to go to bed. Coming from a kid who normally has to be wrestled into bed this is progress indeed. So I took him to his bed, pulled the covers all the way up to his ears, kissed him good-night.
Then I headed downstairs to count my chocolate!
"Oliver! Look over here. O-li-ver. ... Oliver!"
"Oliver, leave the hat on and look over here for one second so I can take your picture and I'll let you eat every single piece of candy in that bucket!"
I didn't worry too much about making good on that last promise because the chances of Oliver actually looking at me when I call his name are slim to none. I did manage to get a couple of photos of him in his make-shift costume (whirly hat and suspenders) but only because I was very persistant.
As we walked from house to house last night with Oliver, who had been thoroughly coached on the nuances of trick-or-treating, I reflected a little bit on motherhood. Oliver, you see, wasn't too interested in this particular ritual of childhood and I had to really talk myself out of being disappointed. Before we even approached the first house he started a chorus of "no, no, no, no," tried to break free and return home. I persisted though thinking that once he got the concept he would become a little less resistant and maybe even enjoy himself. I partially got my wish -- he did become a little less resistant but I'm not sure he ever really enjoyed himself.
So much of my concept of motherhood involves wanting to give and to teach my children the things that I think are meaningful and important; sharing with them a way of looking at and thinking about the world. Helping your child discover the world is one of the rewards of motherhood, after all. With Oliver the process of discovery is very subtle and comes with the extra challenge of persistance. A few weeks ago I sat on the front porch in the early October sunshine while Oliver stomped back and forth making loud noises and generally entertaining himself. A hummingbird happened by the remains of the garden close to the porch and I quickly tried to get his attention so that I could point out the bird. This became an exercise in frustration because it is nearly impossible to get Oliver's attention by shouting or calling and because he is not able to follow the path between fingertip and object. By the time I physically positioned Oliver in a location by the rail where he might be likely to spot the fast moving bird on his own, it had gone. I released Oliver back to his stomping and tried to quell my own sense of disappointment at not being able to share the excitemnt with my son. A few minutes later a grasshopper landed on the step next to me and I didn't bother going through the whole routine again. And I felt guilty for not trying.
When we arrived home last night after our short excursion into the night I tried mightily to get a picture of the boy with his costume and then to interest him in a piece of chocolate. As he pulled away, not interested in either the picture or the chocolate, I reminded myself that my growing sense of sadness at the way the evening had turned out was only due to my own notions about what motherhood and childhood should be -- the mistaken belief that the context of being a mother and of being a child is what matters.
The evening ended on a high note when Oliver came to me and said: "I want to go to sleep." This is the second night out of four when he has told us that he was tired and wanted to go to bed. Coming from a kid who normally has to be wrestled into bed this is progress indeed. So I took him to his bed, pulled the covers all the way up to his ears, kissed him good-night.
Then I headed downstairs to count my chocolate!
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