Our culture and that of many others is competitive by nature. We've been lead to believe that there isn't enough for everyone. That others aren't to be trusted and that if we aren't winning, we must be losing. That we have to paddle up hill to get where we want to go. We've bought into the notion that we can't just be. Does anybody let their guard down anymore?
Matthew has brought something to this life that's uniquely his. He has found a way of being that allows for growth and independence without alienating others. He plays video games in such a way that it drives his brother nuts. He gets taking turns. You go, then I go, then you go, etc..But, to what end? He doesn't seem to have the capacity to want to beat or be better than someone else. It's so refreshing to watch him engage in life with no inkling toward coming out on top.
Our culture would label him with unpleasant names, such as, unambitious. Which of course, means noncompetitive. But, Matthew lives life fully. He may not be engaged in a way that's easily read or understood. He has his own way of engaging in what interests him. He has no tolerance for things that are unpleasant to him. He cares only for that which pleases and makes him happy. Or those things that make him laugh.
As I've said before, regarding Matthew, there is something to be learned by us. He's made no conscious claim of it but, I believe he's here to teach us something, as I believe all people with autism are here to teach us something. I don't believe that there are suddenly tens or hundreds of thousands of kids with autism on the planet because of the water, or pollutants, or vaccines, or whatever the cause dejour is.
If these kids respond so well to love, nature, laughter, music... If they don't have a true sense of gender, ego, or time.. all human characteristics. It seems to me that it's not too far fetched to think they're here to teach humanity a little bit about God. I don't mean it in a secular way. I mean the power of the universe, non judgement, spiritual energy if you will. This wasn't always the way I saw things. I was a firm believer that my son was broken and needed to be fixed, for many years. Over time, I grew and became more willing to see things his way, rather than continuing to force him to see things my way.
I have found over the years that the more willing I am to step into Matthew's world, the more willing he is to reciprocate, and step into mine. The safer he feels in this world the more willing he is to stay for extended periods of time. He has something profound to offer this world. I'm sure of it. And he will give it to us in his own time on his own terms. Perhaps, he is sharing it with us all now and all we have to do is take notice.
Thursday, July 23, 2009
Saturday, July 18, 2009
Mr. Independence
Ahh! Time alone, at the computer. These days it's scarce. A certain 12 year old has been monopolizing the computer. Tonight he's with his Dad, so I have the house and the computer.
I've noticed quite a bit about Matthew over the last week or so. About his growing up, his independence, his ability to handle more stimuli than before. It's a breath of fresh air, a relief and a moment for a proud mother to boast.
He has been washing and drying his body by himself during baths and with minor assistance washing his own hair. What he does by himself is all his.. no prompting, no assistance. He has been answering many questions spontaneously, with no prompting. This wasn't happening 2 weeks ago.
All this is of course no big deal to most folks with regard to their kids. But, for Matthew these are significant milestones. He is moving into a reality that is making his life better, without losing the preciousness that makes him Matthew. He is joining his peers in that rite of passage called self reliance. The truth be known, Matthew has always been more independent than I would have liked. But, his life is not mine and I have very little say (or at least I should have very little say) in how he chooses to grow up. As long as he is being reasonably safe, his path is his to choose and how he travels along it is his to choose, as well.
I know this is not the philosophy of many caregivers. I have to remind myself often that he is not mine. He is his and his alone. His choice of behaviors are not a reflection on me. Controlling him to make me feel more comfortable is not what it's all about. Yes, this sometimes drives me to tears. And yes , it sometimes brings insecurities to the surface, that result in me screaming. But, I try to apologize to him when this happens. Because, I too am a work in progress.
As long as he and I believe that he will grow and mature like all the other boys out there, I figure, the more likely it is to happen. The more likely he is to become the best person he can be. With love, patience, tolerance and acceptance this boy will grow to be a fine young man. The kind that would make any mother proud.
I've noticed quite a bit about Matthew over the last week or so. About his growing up, his independence, his ability to handle more stimuli than before. It's a breath of fresh air, a relief and a moment for a proud mother to boast.
He has been washing and drying his body by himself during baths and with minor assistance washing his own hair. What he does by himself is all his.. no prompting, no assistance. He has been answering many questions spontaneously, with no prompting. This wasn't happening 2 weeks ago.
All this is of course no big deal to most folks with regard to their kids. But, for Matthew these are significant milestones. He is moving into a reality that is making his life better, without losing the preciousness that makes him Matthew. He is joining his peers in that rite of passage called self reliance. The truth be known, Matthew has always been more independent than I would have liked. But, his life is not mine and I have very little say (or at least I should have very little say) in how he chooses to grow up. As long as he is being reasonably safe, his path is his to choose and how he travels along it is his to choose, as well.
I know this is not the philosophy of many caregivers. I have to remind myself often that he is not mine. He is his and his alone. His choice of behaviors are not a reflection on me. Controlling him to make me feel more comfortable is not what it's all about. Yes, this sometimes drives me to tears. And yes , it sometimes brings insecurities to the surface, that result in me screaming. But, I try to apologize to him when this happens. Because, I too am a work in progress.
As long as he and I believe that he will grow and mature like all the other boys out there, I figure, the more likely it is to happen. The more likely he is to become the best person he can be. With love, patience, tolerance and acceptance this boy will grow to be a fine young man. The kind that would make any mother proud.
Thursday, July 2, 2009
The Concept of Time
We all have moments of what feels like a loss of time. Where did the time go? Wow! That only took 1 hour? Felt more like 4 hours. You know what I mean. And over a long period, say 10-20 years, it's even weirder. Sometimes I still feel like I'm in college and it's been 25 years.
Well Matthew doesn't seem to get it at all. The concept of time passing is so foreign that he often, just stares blankly at me when I talk about it. He's learning about calendars at school; and marking the days as they pass. It's like a game to him. This morning he showed me what day it was on the calendar and then began to say the days of the week and their numbers to the end of the month. He declared that it was Thursday July 30th 2009 and wouldn't hear otherwise. When I tried to explain that it was really Tuesday the 7th he had a mini nutty. I'm sure he's thinking, "If I want it to be the 30th, why can't it be so." So, I pretend that's it's whatever day he says. Since he doesn't get the time thing, why try to explain how wrong he is.
This brings me to an interesting point. What most of these kids lack is a sense of being human, of earthliness, to coin a word. It seems to me most of these PDD-NOS kids got dropped down on Earth from somewhere else, figuratively, of course. They don't get time, social cuing, language, cultural/socially correct behavior, communication is brutal for them. Everything that comes more or less naturally to everyone else is profoundly difficult for them.
The three things my son understands without any explaining are love, music and laughter. Everything else is somewhat or completely strange to him. It's all work for him. Love, music and laughter come easily. I'm not lost on the universally, spiritualness of these three gifts. I like to pretend, if you will, that Matthew is a gift. A gift to help me/us understand how important love, laughter and even music are to the world. And how unimportant, looks, money, things and stuff, ego, gender, being right or better than someone else, or being on time, really are. Because, when this life is over none of that will have mattered at all.
If we could stop trying to make them more like us and learn to be a little more like them, we might actually be doing the world a better service. I'm not lost on the need for these kids to be able to get by in a world that's foreign to them. Life skills are a vital part of being human. Learning self care, basic math, how to read and at least minimally functioning in society are skills that need to be worked on.
Here's an idea that isn't novel. It's been brought up by people with autism before. Suppose we look at it not like a disease that needs to be stamped out, like cancer or diabetes, but, rather a gift that comes with a price. Most profound gifts come with a price. These folks are here for a reason. Lots of them too. It's not the vaccines, the food they eat, bad parenting. It's not any of the screwy things we'd like to believe. I'm going out on a limb here. I know I'm going to offend a few people and what they'd like to think are their sensibilities. But, what if autistic people were here to help us raise our collective vibrations. What if they came as a gift to humanity, to teach us about what's really important about being human.
What if...
Well Matthew doesn't seem to get it at all. The concept of time passing is so foreign that he often, just stares blankly at me when I talk about it. He's learning about calendars at school; and marking the days as they pass. It's like a game to him. This morning he showed me what day it was on the calendar and then began to say the days of the week and their numbers to the end of the month. He declared that it was Thursday July 30th 2009 and wouldn't hear otherwise. When I tried to explain that it was really Tuesday the 7th he had a mini nutty. I'm sure he's thinking, "If I want it to be the 30th, why can't it be so." So, I pretend that's it's whatever day he says. Since he doesn't get the time thing, why try to explain how wrong he is.
This brings me to an interesting point. What most of these kids lack is a sense of being human, of earthliness, to coin a word. It seems to me most of these PDD-NOS kids got dropped down on Earth from somewhere else, figuratively, of course. They don't get time, social cuing, language, cultural/socially correct behavior, communication is brutal for them. Everything that comes more or less naturally to everyone else is profoundly difficult for them.
The three things my son understands without any explaining are love, music and laughter. Everything else is somewhat or completely strange to him. It's all work for him. Love, music and laughter come easily. I'm not lost on the universally, spiritualness of these three gifts. I like to pretend, if you will, that Matthew is a gift. A gift to help me/us understand how important love, laughter and even music are to the world. And how unimportant, looks, money, things and stuff, ego, gender, being right or better than someone else, or being on time, really are. Because, when this life is over none of that will have mattered at all.
If we could stop trying to make them more like us and learn to be a little more like them, we might actually be doing the world a better service. I'm not lost on the need for these kids to be able to get by in a world that's foreign to them. Life skills are a vital part of being human. Learning self care, basic math, how to read and at least minimally functioning in society are skills that need to be worked on.
Here's an idea that isn't novel. It's been brought up by people with autism before. Suppose we look at it not like a disease that needs to be stamped out, like cancer or diabetes, but, rather a gift that comes with a price. Most profound gifts come with a price. These folks are here for a reason. Lots of them too. It's not the vaccines, the food they eat, bad parenting. It's not any of the screwy things we'd like to believe. I'm going out on a limb here. I know I'm going to offend a few people and what they'd like to think are their sensibilities. But, what if autistic people were here to help us raise our collective vibrations. What if they came as a gift to humanity, to teach us about what's really important about being human.
What if...
Wednesday, July 1, 2009
Going To The Beach
Going to the beach with Matthew has been one of the high points of this summer, so far. We go at low tide so, there's lots of room to run around. We find a stick and then write words and letters in the sand. Then he announces gleefully "S is for seagull." or "S is for seahorse." This week it seems to be all S words. Writing shark, seagull and seahorse over and over in the sand is endless fun for Matthew.
I am ceaselessly awed by his lack of inhibition. Racing from one end of the beach with stick in hand, shouting out, in his best sing-song voice "S is for seaweed.". As if he's just made the most amazing discovery. I imagine other boys and girls thinking "Who wants to do spelling. It's summer. School's over." All the while, Matthew is making discoveries and learning and loving it. He's thrilled with himself when he comes up with a new word for the letter S, especially if it's related to water.
We have been to the beach 3 or 4 times so far. There's no sitting and digging in the sand or playing in the water. He doesn't see the point in digging. When he gets his suit wet he wants to take it off. Well, when we spill something at home we change our clothes, right? So, it only makes sense to him to take the wet suit off. This was fine when he was 2. Everybody likes nude babies on the beach. Nude ten year olds is something different. He doesn't get it. Why is it wrong now?
In many ways the more I know Matthew the more I want to be like him. He's not encumbered by inhibitions. He asks for what he wants. He's not afraid to make his needs and wants known. He knows and believes he should have all that he desires. Believes it's his birth right. The look of confusion on his face or the tears that come when the answer is no, the occasional screaming and foot stomping tells me he doesn't get it. It doesn't make sense that desert can't come before dinner. It doesn't make sense that he can't be up at 2am.
He has no shame in his naked body. There isn't a person out there out there, over the age of five who has no inhibitions about their body. We are taught as kids to think of others first, to be conscious of what we look like, to be concerned what others will think of us. From the beginning we are taught inhibition. We are all taught these things and we buy into them. Matthew's not buying into it. Which begs the question..Who's really needs to change him or us?
I am ceaselessly awed by his lack of inhibition. Racing from one end of the beach with stick in hand, shouting out, in his best sing-song voice "S is for seaweed.". As if he's just made the most amazing discovery. I imagine other boys and girls thinking "Who wants to do spelling. It's summer. School's over." All the while, Matthew is making discoveries and learning and loving it. He's thrilled with himself when he comes up with a new word for the letter S, especially if it's related to water.
We have been to the beach 3 or 4 times so far. There's no sitting and digging in the sand or playing in the water. He doesn't see the point in digging. When he gets his suit wet he wants to take it off. Well, when we spill something at home we change our clothes, right? So, it only makes sense to him to take the wet suit off. This was fine when he was 2. Everybody likes nude babies on the beach. Nude ten year olds is something different. He doesn't get it. Why is it wrong now?
In many ways the more I know Matthew the more I want to be like him. He's not encumbered by inhibitions. He asks for what he wants. He's not afraid to make his needs and wants known. He knows and believes he should have all that he desires. Believes it's his birth right. The look of confusion on his face or the tears that come when the answer is no, the occasional screaming and foot stomping tells me he doesn't get it. It doesn't make sense that desert can't come before dinner. It doesn't make sense that he can't be up at 2am.
He has no shame in his naked body. There isn't a person out there out there, over the age of five who has no inhibitions about their body. We are taught as kids to think of others first, to be conscious of what we look like, to be concerned what others will think of us. From the beginning we are taught inhibition. We are all taught these things and we buy into them. Matthew's not buying into it. Which begs the question..Who's really needs to change him or us?
Sunday, June 28, 2009
A Gift Like No Other
All little girls dream of becoming a mommy. At least most of us do. I can remember at about age twelve, I knew in my heart of hearts that I wanted to be a mom more than anything else. More than a career, more than a princess (never had that dream), even more than the prince that comes with the baby. He wasn't even in the picture. That's another story.
As things turned out I got my wish. Two of them. My first, now a beautiful 12 year old boy and my second a beautiful 10 year old boy. My second, Matthew was normal in every way. Full term, unlike the first. Came out screaming, unlike the first. And from the time he was conceived, to this day he doesn't stop, except to sleep, unlike the first.
Matthew has been a mover and a shaker from the start. He screamed, threw up, ate, pooped, screamed some more. Oh, and occasionally he slept. The first 3-4 years of his life, I'm not so sure he liked being here. Planet Earth was like a foreign country. He didn't get talking, eye contact, toileting, social cuing, chewing his food, wearing clothes. It seemed he didn't see the point in any of it. If it didn't feel good to him, why bother? Rules, following directions, doing things your way, were not part of his life. When he was finally diagnosed with autism at age 3, I thought my world was going to come to an end.
Slowly, very slowly, over the years we have come to have a great appreciation and fondness for each other. He has taught me more in his life than I ever learned on my own. Though sometimes, being his mother is heartbreaking, being without him would crush me more. He has learned to have eye contact, use the toilet, chew his food and wear clothes. He's beginning to pick up on social cues. This, as we know, isn't easy. Some of the most advanced humans don't always get it right.
He has all be it brief, conversations with me. He asks for what he wants. Food, videos. He tells me where he wants to go. The beach, library, playground, etc. I know I'm not sure but, I think he knows what he wants most of the time. It's the getting me to understand what it is, that's hard for him.
He's hard to figure out sometimes, not because he doesn't know what's going on, but because I can't figure out what he's trying to say. The gift of Matthew is for me to figure him out. For me to learn how to get into his world. I have come to find over the years, often brought here kicking and screaming, that patience, love and understanding are what gets Matthew into my world. His world has always been open to me. When I can stop and just be, just listen, just accept him, his world is my world.
I wouldn't trade him for anything. I wouldn't go back in time for a "normal" kid. Not on my life. He has warmed my heart in ways I never though possible. I am who I am today, in large part, because of Matthew. He has taught me things about myself that no regular kid could come close to. He surely doesn't know it but, he is a master teacher. He is a gift like no other.
As things turned out I got my wish. Two of them. My first, now a beautiful 12 year old boy and my second a beautiful 10 year old boy. My second, Matthew was normal in every way. Full term, unlike the first. Came out screaming, unlike the first. And from the time he was conceived, to this day he doesn't stop, except to sleep, unlike the first.
Matthew has been a mover and a shaker from the start. He screamed, threw up, ate, pooped, screamed some more. Oh, and occasionally he slept. The first 3-4 years of his life, I'm not so sure he liked being here. Planet Earth was like a foreign country. He didn't get talking, eye contact, toileting, social cuing, chewing his food, wearing clothes. It seemed he didn't see the point in any of it. If it didn't feel good to him, why bother? Rules, following directions, doing things your way, were not part of his life. When he was finally diagnosed with autism at age 3, I thought my world was going to come to an end.
Slowly, very slowly, over the years we have come to have a great appreciation and fondness for each other. He has taught me more in his life than I ever learned on my own. Though sometimes, being his mother is heartbreaking, being without him would crush me more. He has learned to have eye contact, use the toilet, chew his food and wear clothes. He's beginning to pick up on social cues. This, as we know, isn't easy. Some of the most advanced humans don't always get it right.
He has all be it brief, conversations with me. He asks for what he wants. Food, videos. He tells me where he wants to go. The beach, library, playground, etc. I know I'm not sure but, I think he knows what he wants most of the time. It's the getting me to understand what it is, that's hard for him.
He's hard to figure out sometimes, not because he doesn't know what's going on, but because I can't figure out what he's trying to say. The gift of Matthew is for me to figure him out. For me to learn how to get into his world. I have come to find over the years, often brought here kicking and screaming, that patience, love and understanding are what gets Matthew into my world. His world has always been open to me. When I can stop and just be, just listen, just accept him, his world is my world.
I wouldn't trade him for anything. I wouldn't go back in time for a "normal" kid. Not on my life. He has warmed my heart in ways I never though possible. I am who I am today, in large part, because of Matthew. He has taught me things about myself that no regular kid could come close to. He surely doesn't know it but, he is a master teacher. He is a gift like no other.
Taking A Tub
When Matthew doesn't sleep well, when Matthew doesn't feel well, when Matthew is all wound up, he asks for a tub. He likes to soak in the warm water and unwind. When he was a little guy, I'd just put him in it. If he was all out of sorts and upset, I'd just drop him in a bath and he'd calm down. It's interesting what water does for autistic kids. It calms them or brings them to life.
Matthew has learned over the years what he needs to come back to earth. Sometimes it's a tub. Sometimes it's his blanket, the library. He loves books and movies. With intermittent runnings back and forth, he could watch movies all day. Today it's Pinocchio. Tomorrow Finding Nemo.
He likes to eat. It shows. Dieting is not part of his lexicon. So, I try to get him to eat low sugar, low fat, low calorie healthy, foods. This is a challenge. A work in progress. Matthew is a work in progress. He's all about being happy. Finding things to do that please him. Some not so socially acceptable. He doesn't care. He's not here for you. I find him irresistibly free of inhibitions and guilt, worry, shame. How life affirming to be so free. I couldn't love him more.
With all of this wonderment comes some pit falls. He has moments of great mental discomfort that he can't always control. He finds himself in a state of rage, fear, panic, melancholy. Sometimes one or two of these. Sometimes it seems like all of them. The happy pleasing myself boy is gone. And in his place is his alter ego. Not sure that's it. But, it's all I've got. His moods have improved tremendously over the years with homeopathy. They have also, improved quite a bit with conventional medicine. But, still he hasn't conquered the dark side.
After one of these episodes he always recovers. Comes back to the boy that he was. Like it was never any different. He always returns to peace. The demons are gone like they never came. Until next time.
Matthew has learned over the years what he needs to come back to earth. Sometimes it's a tub. Sometimes it's his blanket, the library. He loves books and movies. With intermittent runnings back and forth, he could watch movies all day. Today it's Pinocchio. Tomorrow Finding Nemo.
He likes to eat. It shows. Dieting is not part of his lexicon. So, I try to get him to eat low sugar, low fat, low calorie healthy, foods. This is a challenge. A work in progress. Matthew is a work in progress. He's all about being happy. Finding things to do that please him. Some not so socially acceptable. He doesn't care. He's not here for you. I find him irresistibly free of inhibitions and guilt, worry, shame. How life affirming to be so free. I couldn't love him more.
With all of this wonderment comes some pit falls. He has moments of great mental discomfort that he can't always control. He finds himself in a state of rage, fear, panic, melancholy. Sometimes one or two of these. Sometimes it seems like all of them. The happy pleasing myself boy is gone. And in his place is his alter ego. Not sure that's it. But, it's all I've got. His moods have improved tremendously over the years with homeopathy. They have also, improved quite a bit with conventional medicine. But, still he hasn't conquered the dark side.
After one of these episodes he always recovers. Comes back to the boy that he was. Like it was never any different. He always returns to peace. The demons are gone like they never came. Until next time.
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