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.
Monday, April 30, 2012
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.
Monday, April 16, 2012
Stepford Mommies
This morning, as I was working my way through my to-do list: schedule camp check ups; call surgeon with last-minute questions; cancel Boston Globe subscription; and read file before work call, I had one of the morning "news" shows on mute in the background. I noticed on the ticker at the bottom of the screen that some uber-successful mommy blogger was coming on to discuss her failed marriage and of course her new book. Then I saw her: perfectly coiffed blonde, not a hair, tooth, or piece of flab out of place. I had many thoughts, one of which was "How about they flip the script for a change and try this:
Matt Lauer will be interviewing a harried working mom, who does not have the luxury of sitting home in her PJs making money by sharing advice on which baby stroller or formula to buy. This mom has spent decades commuting full time and only got off that train after her father died, and in anticipation of her autistic son's entry to middle school.
This mom does not have perfectly coiffed blond hair, but she does have crooked teeth and dark circles under her eyes. Her hair wouldn't know how to behave if a four star general commanded it to. This mom spent a solid month of ten and twelve hour days in a NYC hospital after her father's lung cancer surgery, to make sure the doctors and nurses there did not abuse or kill him. She held work meetings at the StArbuck's across the street to keep from falling behind at work and getting fired. In the process, she managed to be her office's single most productive employee.
Before each morning's journey to the hospital, she kissed her kids and her husban, and left him to carry the heavier home load. She tried to remember to thank him, but probably forgot, in her exhaustion. She attended school conferences, SEPTA meetings, recitals and anything else that was about parental obligation. Her dark circles grew bigger.
She continued to keep journals about her kids, which she had done since each was born. The oldest is now eighteen, and the journal writing continues, albeit more sporadically. She finds more joy in the kindness of her kids to one another and the embrace of her husband than most people find in conquering Everest. She saves kind emails from friends and colleagues because they make her smile, and lift her up on down days. And she never, ever expects to get a call for a TV interview from Matt Lauer."
Thursday, April 12, 2012
Sadness of the Heartery
Sometimes, I think I live in denial. And I'm not just saying that because the season of Passover is upon us, and there are lots of Nile/De-Nile(ial) jokes floating around. I think I may need denial to get through my parenting gig. Otherwise, I might just throw in the towel.
This isn't about being the best parent, having the best kids (whatever that means), or otherwise grabbing the brass ring of parenting. It's about the fact that I have the thing I continually refuse to admit out loud: an incredibly hard road with a profoundly disabled child. And that causes incalculable damage to everyone else in our immediate, nuclear family orbit. This may sound dramatic--perhaps even exaggerated--but it's actually the clearest truth about my life. And the thing I do mental and emotional cartwheels to pretend is not the case.
In the recent space of less than 24 hours, I thought my husband was going to run away; I heard my daughter repeatedly call my son a "f....g idiot" and I heard my son endlessly go on with "I said 'shut up' to my sister!!" In this same time span, I literally jumped on top of Noah at one point to keep him from getting the Ipad (long story), only to realize that he's got physical strength I never knew he had. Ariel then tried to come to my rescue and I fell on her, hurting her arm. It would probably look funny to an outsider, a kind of Three Stooges set piece of pratfalls and head-bangs. But this was all too real. And sad.
Night-into-morning did not bring the hoped-for relief. Noah was back to obsessing again about his DVD player, which couldn't be charged, since he left the chord home. No amount of explaining would help him understand that once we got home, he could use his player again. It got so bad that on top of his verbal obsessing, he was crying real tears in the Florida airport, and I worried that we'd be the reason the pilot would have to initiate an emergency landing once we were airborne.
The look of fatigue and anger on my husband's face, a carryover from the day before, but just more intense, was heartbreaking. It was the look, if you've ever seen one of the face of someone you love, that says: "Don't try to console me. Don't touch me. Don't talk to me. I'm just rage right now." So I didn't even have my partner to lean on. All I had was my cockeyed hope--the one I brought with me when we took my dying father, with his metastasized lung cancer and Alzheimer's to Israel--that somehow, I would make the flight home work. I would sit with Noah; I would distract him; I would get him to forget the DVD player. Truth be told, I had no game plan. I just knew I had to make it work. Just like with my dad. Noah was my model for my father back in 2006; my father was my model for Noah now.
I told Noah a couple of days ago that when he gets upset or angry, and when he says mean things to his sister, it makes my heart sad. A day or so later, when Noah was struggling with his own anger and disappointment and his inability to understand my explanations about his DVD player, he said to me, "Is my heart sad, Mommy?" I don't know Noah. I'm not smart enough to know; I'm not strong enough to know. I'm just dumb and dedicated enough to keep trying to figure it out.
This isn't about being the best parent, having the best kids (whatever that means), or otherwise grabbing the brass ring of parenting. It's about the fact that I have the thing I continually refuse to admit out loud: an incredibly hard road with a profoundly disabled child. And that causes incalculable damage to everyone else in our immediate, nuclear family orbit. This may sound dramatic--perhaps even exaggerated--but it's actually the clearest truth about my life. And the thing I do mental and emotional cartwheels to pretend is not the case.
In the recent space of less than 24 hours, I thought my husband was going to run away; I heard my daughter repeatedly call my son a "f....g idiot" and I heard my son endlessly go on with "I said 'shut up' to my sister!!" In this same time span, I literally jumped on top of Noah at one point to keep him from getting the Ipad (long story), only to realize that he's got physical strength I never knew he had. Ariel then tried to come to my rescue and I fell on her, hurting her arm. It would probably look funny to an outsider, a kind of Three Stooges set piece of pratfalls and head-bangs. But this was all too real. And sad.
Night-into-morning did not bring the hoped-for relief. Noah was back to obsessing again about his DVD player, which couldn't be charged, since he left the chord home. No amount of explaining would help him understand that once we got home, he could use his player again. It got so bad that on top of his verbal obsessing, he was crying real tears in the Florida airport, and I worried that we'd be the reason the pilot would have to initiate an emergency landing once we were airborne.
The look of fatigue and anger on my husband's face, a carryover from the day before, but just more intense, was heartbreaking. It was the look, if you've ever seen one of the face of someone you love, that says: "Don't try to console me. Don't touch me. Don't talk to me. I'm just rage right now." So I didn't even have my partner to lean on. All I had was my cockeyed hope--the one I brought with me when we took my dying father, with his metastasized lung cancer and Alzheimer's to Israel--that somehow, I would make the flight home work. I would sit with Noah; I would distract him; I would get him to forget the DVD player. Truth be told, I had no game plan. I just knew I had to make it work. Just like with my dad. Noah was my model for my father back in 2006; my father was my model for Noah now.
I told Noah a couple of days ago that when he gets upset or angry, and when he says mean things to his sister, it makes my heart sad. A day or so later, when Noah was struggling with his own anger and disappointment and his inability to understand my explanations about his DVD player, he said to me, "Is my heart sad, Mommy?" I don't know Noah. I'm not smart enough to know; I'm not strong enough to know. I'm just dumb and dedicated enough to keep trying to figure it out.
Wednesday, April 11, 2012
Pavlov Lives
Though not proud to admit it, I sometimes think of my middle son and trained animals in the same instant. You can get dogs, cats, seals, dolphins and other animals to "perform" once they have been adequately trained. Though it might pain other parents to hear it, autistic kids have a lot in common with trained animals. Ok, I take that back. To save myself any hate mail, I will insist that only MY autistic child has a lot in common with trained animals.
That fact is brought home to me again and again, but most recently on a family vacation. My husband pointed out a crane (the bird) to my daughter. When Noah heard the word 'crane' he immediately piped up with "a crane is a piece of construction equipment which lifts heavy things." That came straight from the vault of construction information, one which Noah dips into repeatedly as a way to start his idea of a conversation. Other topics include farm equipment, animal facts and other plug-and-play information that Noah programs into himself when he needs or wants to communicate. Pavlov's dogs perhaps pre-figured kids like Noah. At this point though, I think Noah has out-Pavloved Pavlov. Not sure if that's good news or not. It just is. And so is Noah. He just is, animal comparisons and all.
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