Noah brought home his My Book About Me this week. As I read through it I thought, "This is not your typical teenager's self-assessment. No, it's far more amazing and wonderful than that." Much in the book was familiar, but lovely still. Favorite color: blue. Favorite food: chicken. Favorite song: Jellyman Kelly. I did learn that Noah's favorite place to be is a restaurant. I would have thought the Museum of Natural History or the zoo.
What does Noah's name mean: Nice Obedient Able Hopeful. I melted over that, though I paused a bit when I got to obedient. It's true, for the most part, but it also worries me. Will Noah know when in life to stand up for himself, when it's necessary--or even urgent--not to be obedient? God I hope so.
If Noah could be an ice cream flavor, he would be chocolate. He would be Oscar, if he could be any cartoon character. His superpower would be the ability to fly, which meshes perfectly with his desire to be a pilot when he grows up. And here is Noah in a nutshell: If I won the lottery, I would Share.
Noah is special because he likes to dance, read books, and eat apples and oranges. Flowers make him happy. He's scared of the rain. And tickle makes him laugh. He wants to travel to Colorado.
I've always believed that the greatest power lies in simplicity. Most of us spend way too much time turning molehills into mountains. Here's a child--a young man, actually--who turns great adversity into simple truth and beauty. There is something spectacular and miraculous in that. I feel so privileged to be able to learn from this incredibly-abled teacher. I just hope that he considers me a worthy student. Flowers, sharing and flying. Indeed.
Friday, May 4, 2012
Thursday, May 3, 2012
Feeling Failing
I sent my eldest son a text yesterday, telling him that we have something new in common: I had a crummy job interview too. He'd complained to me back in March that he thought he did poorly in a job interview and I told him at the time that everyone feels that way at least some of the time, that I am a lot older and have felt that way too. Little did I know that a month and change later, I would be having one of those crummy interview experiences. But what was charming and lovely was Sam's response to my text message: "Awwww Mommy, I'm sorry."
Love and life are certainly reciprocal experiences, only meaningful when shared in relationship to others. As a parent, it feels like I always have to be the strong one, the tree to be leaned against. Sometimes though, I feel like the bent branch. I hesitate to show that vulnerability to my kids, but then I think that they need to see it, to know that strength is not only found in steely stoicism. One of the most enduring memories I have of my father is seeing him cry. Even then, I knew it took a unique strength for a man to cry, and a superhuman strength for him to do it in front of his children. In that circle of life and memory way that I live, one of the times I regularly show my vulnerability is when I go to the cemetery. Sam and I have gone together on several occasions, and I always tell him, through my tears, how much I hate that place, how I cannot stand that this is where my father--his grandfather--is. I don't want to pretend a reverence for that place that I don't feel. I hate that the cemetery is in an ugly urban neighborhood, that the people who live near it have no feeling for the people buried there. I want my kids to know that it's ok to push against convention, to say out loud what other people might only whisper to themselves.
In a funny way, that's exactly what parenting an autistic child teaches you. There are not just the myriad lessons about failure, but the many more lessons Noah teaches me about what real honesty looks and sounds like. He only knows how to be who he is. There is no other persona he can put on display for an interview. God, that must be liberating. Just to be. I think I come close most of the time but this week, I left some important part of me in the waiting room, or so it felt. Maybe the questions just seemed so stilted and dull that I couldn't quite connect. As my husband often says, I have no bullshit factor,
no poker face. So in those "sell yourself" moments, I am as handicapped as I can be. Ah well, such is life. Sometimes, all clicks and flows. Other times, you feel like the only person on the dance floor with no rhythm. But then the person who is supposed to lean on and look up to you reaches out and let's you know it's okay. Failing isn't the end of the world. It's just being human.
Monday, April 30, 2012
Why a Jungle?
I named this blog some time ago, giving a bit of thought to what I would call it. I wanted a name that I thought would be a little clever, would be easy to remember, and would readily suggest the complexity of parenting, especially when it involves a child with special needs.
Lately though, I've been giving more thought to the word 'jungle' and the aptness of it. It occurs to me that the name is a much better fit than I realized when I rather casually chose it. That's because since I gave the blog its name, I have actually been to a real jungle, and I came away with a sense of wonder about the place that goes far beyond the easy images of dense greenery, mud and mosquitoes that might come immediately to mind.
The jungle I was in was dense, lush, water-logged, and both loud and quiet. It was incredibly calming to me; I could actually feel my heart rate slow in that extraordinary place. It was also a wonderland of life, but one I was hard-pressed to appreciate without the insight (and incredible vision) of our guides, who could find a tiny poison dart frog in a sea of green leaves. There were ants, bats, spiders, snakes, howler monkeys, parrots, anacondas and too many birds to name. Each had its place in the jungle. Each took from it the sustenance it needed, sometimes at the expense of other creatures. To listen at night to the calls of the howler monkeys was magical and incredibly spooky. And to walk in the jungle at night, carrying only a small flashlight, was to appreciate what true darkness is, and to understand that darkness masks a world teeming with life.
So what on earth does any of this have to do with parenting, much less with autism? It's rather simple, I think. Parenting involves far less control than we think it does. There are rhythms children follow that are natural to them, that we might redirect a bit, but not change entirely. There is mystery and magic in parenting. There is wonder, and there is fear. There is complexity hidden beneath the surface of how our kids appear to us and to others, in how they present themselves. There is dependency in families; there are needs each of us has that others of us respond to. Some are dominant, others are dependent. And finally, there is no linear understanding of parenting that leads you from point A to some destination at point Z. There are, however, many discoveries along the way, some desirable, some terrifying. And stopping to look, to really look, and to listen, to really listen, may be the most important gift we bequeath ourselves as parents.
I don't know that my eyes and ears have ever been more open than they were during my few days in the jungle. Things I would have thought myself terrified of became magical memories that I would not trade for anything. When I tell people that I swam in a lagoon that is home to piranha, anaconda and cayman, they react with disbelief. I do too, but mostly because I have never considered myself brave. But then I never considered myself mother material either. Pushing past my fears and opening my heart and mind to the wonders of nature taught me something about giving in to mystery, to what is unknown, unseen, and undiscovered. Not a bad prescription for how to approach parenting. Hence, the name.
Lately though, I've been giving more thought to the word 'jungle' and the aptness of it. It occurs to me that the name is a much better fit than I realized when I rather casually chose it. That's because since I gave the blog its name, I have actually been to a real jungle, and I came away with a sense of wonder about the place that goes far beyond the easy images of dense greenery, mud and mosquitoes that might come immediately to mind.
The jungle I was in was dense, lush, water-logged, and both loud and quiet. It was incredibly calming to me; I could actually feel my heart rate slow in that extraordinary place. It was also a wonderland of life, but one I was hard-pressed to appreciate without the insight (and incredible vision) of our guides, who could find a tiny poison dart frog in a sea of green leaves. There were ants, bats, spiders, snakes, howler monkeys, parrots, anacondas and too many birds to name. Each had its place in the jungle. Each took from it the sustenance it needed, sometimes at the expense of other creatures. To listen at night to the calls of the howler monkeys was magical and incredibly spooky. And to walk in the jungle at night, carrying only a small flashlight, was to appreciate what true darkness is, and to understand that darkness masks a world teeming with life.
So what on earth does any of this have to do with parenting, much less with autism? It's rather simple, I think. Parenting involves far less control than we think it does. There are rhythms children follow that are natural to them, that we might redirect a bit, but not change entirely. There is mystery and magic in parenting. There is wonder, and there is fear. There is complexity hidden beneath the surface of how our kids appear to us and to others, in how they present themselves. There is dependency in families; there are needs each of us has that others of us respond to. Some are dominant, others are dependent. And finally, there is no linear understanding of parenting that leads you from point A to some destination at point Z. There are, however, many discoveries along the way, some desirable, some terrifying. And stopping to look, to really look, and to listen, to really listen, may be the most important gift we bequeath ourselves as parents.
I don't know that my eyes and ears have ever been more open than they were during my few days in the jungle. Things I would have thought myself terrified of became magical memories that I would not trade for anything. When I tell people that I swam in a lagoon that is home to piranha, anaconda and cayman, they react with disbelief. I do too, but mostly because I have never considered myself brave. But then I never considered myself mother material either. Pushing past my fears and opening my heart and mind to the wonders of nature taught me something about giving in to mystery, to what is unknown, unseen, and undiscovered. Not a bad prescription for how to approach parenting. Hence, the name.
Of Conferences and Creaming
I spent a full day recently at a conference about culture and autism. There were some interesting presentations, especially one from The New York Times writer who penned a lengthy article about a New Jersey boy's transition from high school to adulthood. Another was from an anthropologist who provided interesting insights into the different ways in which autism is understood and lived in other cultures. I stayed until the end to hear a panel presentation about employment for individuals with disabilities, as I've been worried for years now about what happens when the school bus stops coming for Noah.
What I realized is that while it's possible to take a nugget or two of learning from these conferences, they are no substitute for the deep, relentless, day-to-day advocacy that parents engage in as the front line defense between their kids and the real world. No single story is going to tell me what the path for my child is going to be, even if it's 7,400 words' worth in The New York Times. Each journey is unique, and while I might be able to glean something from someone else's story, mostly I'm left to realize that what Justin in New Jersey experiences has almost no bearing on the life of Noah in New York. And perhaps it's unkind of me, but I start to focus on things like: Well, did his mom work full-time outside the home like I did for years and years? Does Justin have other siblings who demanded time and attention from his parents as well?
There's something that probably smacks of gross competitiveness or sour grapes in that, and I'll own it, if that's how it comes across. But unless you walk in my shoes, it's hard to explain how other people's success stories, rather than feeling like inspiration to a parent like me, can feel like a reproof, like a harsh critique of what I haven't done, should have done, etc. But then I think of the child I have, the life he leads, the love he knows, and there is no competition. He is who he is meant to be, and there is no mirror with some other boy's image that should ever be held up to him.
My heart also ached for the mother who asked about the more disabled kids on the spectrum who get closed or booted out of programs. Ah, the creaming issue. That one sticks in my craw too. Everyone wants to serve the kid with Asperger's who is literate, conversational, and has an above-average IQ. Ain't no one lining up for the kids who are aggressive and have IQs in the mentally retarded range. Success is awfully easy for programs to latch onto when they stack the deck in their favor, as some clearly do. They just conveniently ignore the wreckage they leave outside their closed and barred gates, the kids and families who have no place to go, no outlets, no respite. No hope.
I left the conference feeling that it was, up to a point, time well spent. I had the good fortune to walk the distance to the train station with a lovely woman who helps kids like Noah find jobs, and I look forward to connecting with her. She doesn't know me, but was very encouraging about my mothering skills based on what I told her of Noah's path thus far. Maybe she was just being polite, but I'll take my encouragement where I can get it. It's a little pocketful of sunshine, a hedge against the inevitable bad, brooding day somewhere on the horizon.
What I realized is that while it's possible to take a nugget or two of learning from these conferences, they are no substitute for the deep, relentless, day-to-day advocacy that parents engage in as the front line defense between their kids and the real world. No single story is going to tell me what the path for my child is going to be, even if it's 7,400 words' worth in The New York Times. Each journey is unique, and while I might be able to glean something from someone else's story, mostly I'm left to realize that what Justin in New Jersey experiences has almost no bearing on the life of Noah in New York. And perhaps it's unkind of me, but I start to focus on things like: Well, did his mom work full-time outside the home like I did for years and years? Does Justin have other siblings who demanded time and attention from his parents as well?
There's something that probably smacks of gross competitiveness or sour grapes in that, and I'll own it, if that's how it comes across. But unless you walk in my shoes, it's hard to explain how other people's success stories, rather than feeling like inspiration to a parent like me, can feel like a reproof, like a harsh critique of what I haven't done, should have done, etc. But then I think of the child I have, the life he leads, the love he knows, and there is no competition. He is who he is meant to be, and there is no mirror with some other boy's image that should ever be held up to him.
My heart also ached for the mother who asked about the more disabled kids on the spectrum who get closed or booted out of programs. Ah, the creaming issue. That one sticks in my craw too. Everyone wants to serve the kid with Asperger's who is literate, conversational, and has an above-average IQ. Ain't no one lining up for the kids who are aggressive and have IQs in the mentally retarded range. Success is awfully easy for programs to latch onto when they stack the deck in their favor, as some clearly do. They just conveniently ignore the wreckage they leave outside their closed and barred gates, the kids and families who have no place to go, no outlets, no respite. No hope.
I left the conference feeling that it was, up to a point, time well spent. I had the good fortune to walk the distance to the train station with a lovely woman who helps kids like Noah find jobs, and I look forward to connecting with her. She doesn't know me, but was very encouraging about my mothering skills based on what I told her of Noah's path thus far. Maybe she was just being polite, but I'll take my encouragement where I can get it. It's a little pocketful of sunshine, a hedge against the inevitable bad, brooding day somewhere on the horizon.
Sunday, April 22, 2012
Article (instead of link) for Reflections, Reflections
Showing off my limited tech skills, here's the full article, for which I tried to provide a link in Reflections, Reflections...
The story of Richard Williams, once a 21−year−old with the potential to become the best tennis player in America, was longer lost than the ship upon which the unique thread of his story was woven.
To be precise, the Titanic had gone undiscovered for 73 years before explorers found it 1,200 feet below the sea’s surface. It’s now 100 years and a few days later, and Williams’ heroism still goes unnoticed.
As David Whitley, a columnist for AOL FanHouse, reported on Saturday, Williams and his father Charles were unruffled by the initial jerk of the Titanic crashing into the iceberg. “After all,” Whitley wrote, “the Titanic was considered unsinkable.”
That fateful night, Richard Williams shouldered down a door to rescue a trapped passenger, acted as a life preserver for a man who couldn’t fit onto a decaying lifeboat and survived five hours of 28−degree water.
He also lost his father.
Every so often, a story is written about a young man or woman who has overcome all odds to excel at something, whatever it may be. What typically is left out, however, is the kind of lives that these people lead. Richard Williams led an exemplary one, and it’s a damn shame that his own improbable journey has been lost among the many annals of that tragedy.
When a rescue boat finally arrived close to dawn, Richard, despondent over the loss of his father whom he had seen just hours earlier in good health, went down beneath the deck to have his legs examined.
The doctor’s prognosis was dire — gangrene, he said — yet Williams brazenly refused amputation. Two years later, in an extraordinary triumph of the human spirit, he would become one of the best tennis players in the world.
His wife once commented that if you were to speak to him, you’d never know that he played tennis, much less that he won the 1912 U.S. mixed doubles championship, the 1914 and 1916 U.S. singles championships, the 1920 Wimbledon men’s doubles championships and an Olympic gold in 1924.
Or that he earned the Chevalier de la Legion d’Honneur and Croix de Guerre while serving in the American army during World War I, became a wealthy Philadelphia−based investment banker and philanthropist and served as the president of the Historical Society of Pennsylvania.
One might argue that a man’s mettle is seen most clearly in the face of daunting opposition and that is certainly a legitimate assertion. But I believe that the way in which Williams carried himself after his Titanic misadventure speaks volumes more about his character than his heroics on the ship ever could.
The act of going quietly about one’s business is irretrievably lost on this generation. In an age fraught with social media, most of us who amount to something of renown tend to tweet about it or boast about it on Facebook.
It would not be a stretch to add that the increasing availability of social networks has contributed heavily to the demise of humility. People not only feel the need to communicate each of their successes, but they can now satisfy that need on whatever sites they’re members of.
So thank you, Mr. Williams, for living the kind of life that we all should strive to emulate. Your story is at once inspiring and vital, as it marries success and modesty in a perfect demonstration of how greatness does not have to supersede, and can instead coexist with, first−rate character.
Let this be a lesson to us all: No matter the material wealth and accomplishments you rack up, do not lose sight of what’s important. I, for one, wouldn’t mind being remembered in the same vein as Richard Williams.
Reflections, Reflections
It's funny how life as a parent mutates over time. It goes from your children being totally dependent on you, the parent, to their growing apart and away, carving out their own space and way of being in the world. It's a process that can feel bittersweet. But it can also hold up to you a magic mirror, one in which you see the person you gave birth to reflected back at you as a unique human being but one who, for better or worse, embodies much of what you transmitted to him via DNA and life example.
You hope--and maybe pray??--that the child you raise becomes someone you not only love, but someone you actually like, someone you would want to claim as your own if he weren't yours. It is a joy beyond words to really, really like your child, and to discover that not only through physical connection--seeing and spending time with him--but through finding out how he thinks, and what he thinks about. This link contains the latest magical discovery I have made.
Http://www.tuftsdaily.com/sports/sam-gold-the-ot-1.2731467#.T5P_rQJWEcE.mailto
If there is any sadness here, it only comes from thinking about the fact that Sam is so much the embodiment of my father, who lived a life of quiet, exceptional decency, yet did not live to see Sam embrace his own deep decency and thoughtfulness so wholeheartedly. Life is funny and heartbreaking that way: it can give you gifts of inheritance and gratitude, but steal some of those gifts right out from under you, so you are left with wistfulness where full-throated joy should be. Nevertheless, I have to believe that the person who is physically missing in my life--my father--is given back to me through my son, and through his own reflections and commentary on the world in which he lives. This, after all, is what real inheritance is, or ought to, be.
Tuesday, April 17, 2012
The Absent Child. The Good Soldier.
I wonder if anyone reading my musings knows I have a third child. My daughter and Noah ("the autistic one") have made repeated appearances, but not so much (at all?) my eldest. That's no reflection on my affection for him, which is as great as it is for his siblings. I think it's more a reflection on his physical absence, and on his overall quiet presence.
Sam is off on his post-high school journey, well-earned and well-timed. He was probably ready to leave a year before he did, and not because of difficulties at home, but due to boredom with the whole high school experience. In terms of his home life though, I wonder if he's relieved to relinquish his role as the good soldier.
While my husband and I joke that Noah is sandwiched between the ideal siblings--passive and aggressive--that's actually quite true. Ariel is out there with her critiques and with her helpful advice about Noah. Sam has made an art of not complaining. Perhaps that's why I was taken aback--and pleasantly surprised at the same time--when Sam told me, not long before he left for school, that he never really had a playmate in his little brother, that he missed out on that.
For Sam, that tiny bit of revelation spoke volumes. He was finally saying out loud what he'd lost in having an autistic brother. And it was a lot. The boys are only two years apart chronologically, but universes apart developmentally. It must have been painful for Sam to have a little brother and yet not really have one. He saw the things his friends did with their younger brothers, and he must have imagined even more. He knew from his own experience what it felt like to be embarrassed in public, to fume in private. And yet...
Sam has become--and probably always was--a deeply compassionate young man, someone who has a real loathing for braggarts and others consumed with themselves. He has on his own chosen to work with developmentally disabled children, teens and adults, though he has not gone out of his way to help his brother. He has not thwarted Noah in any way, and has done whatever we've asked in terms of helping Noah, but he has not made a point of reaching out proactively, or helping us understand Noah better, the way Ariel has. There's no judgment in that; I think everyone in the orbit of the disability asteroid protects himself however he can. Sam found his own way.
And maybe that's the embedded lesson here: each of us finds his own way. For some of us, it's a constant flurry of activity, to try to "fix" our child and his functioning; for others of us, it's giving our breath--almost literally--to that child, to the point of depriving ourselves; for still others it's a whiplash walk between love and hate; and it can even be an evolution of understanding, both of ourselves and our place in the family orbit. Each journey has its gliding moments and its rattling turbulence, but we still stand a chance of arriving at exactly the right destination. And if we're lucky, we might even arrive together.
Sam is off on his post-high school journey, well-earned and well-timed. He was probably ready to leave a year before he did, and not because of difficulties at home, but due to boredom with the whole high school experience. In terms of his home life though, I wonder if he's relieved to relinquish his role as the good soldier.
While my husband and I joke that Noah is sandwiched between the ideal siblings--passive and aggressive--that's actually quite true. Ariel is out there with her critiques and with her helpful advice about Noah. Sam has made an art of not complaining. Perhaps that's why I was taken aback--and pleasantly surprised at the same time--when Sam told me, not long before he left for school, that he never really had a playmate in his little brother, that he missed out on that.
For Sam, that tiny bit of revelation spoke volumes. He was finally saying out loud what he'd lost in having an autistic brother. And it was a lot. The boys are only two years apart chronologically, but universes apart developmentally. It must have been painful for Sam to have a little brother and yet not really have one. He saw the things his friends did with their younger brothers, and he must have imagined even more. He knew from his own experience what it felt like to be embarrassed in public, to fume in private. And yet...
Sam has become--and probably always was--a deeply compassionate young man, someone who has a real loathing for braggarts and others consumed with themselves. He has on his own chosen to work with developmentally disabled children, teens and adults, though he has not gone out of his way to help his brother. He has not thwarted Noah in any way, and has done whatever we've asked in terms of helping Noah, but he has not made a point of reaching out proactively, or helping us understand Noah better, the way Ariel has. There's no judgment in that; I think everyone in the orbit of the disability asteroid protects himself however he can. Sam found his own way.
And maybe that's the embedded lesson here: each of us finds his own way. For some of us, it's a constant flurry of activity, to try to "fix" our child and his functioning; for others of us, it's giving our breath--almost literally--to that child, to the point of depriving ourselves; for still others it's a whiplash walk between love and hate; and it can even be an evolution of understanding, both of ourselves and our place in the family orbit. Each journey has its gliding moments and its rattling turbulence, but we still stand a chance of arriving at exactly the right destination. And if we're lucky, we might even arrive together.
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