N did great at the dentist today. Dr. Gina was new to him, but he handled it like a pro. We exited to the waiting room where she was to meet us to discuss any issues with his x-rays. And as we waited, I couldn't help but notice--though I tried not to--the young man pacing back and forth, regularly announcing, "Go home!" to his parents. His mother reminded Sam that they had to wait until the dentist could see them. That only elicited more "Go home!" proclamations from Sam. That was all he said as he paced back and forth, ears covered by headphones that I could only imagine were piping in something that was meant to keep him tethered--or tethered enough--to make it through a dental visit.
I felt guilty, truly, that I could have a kind of conversation with N, at that moment about how to answer a call on his new cell phone. Actually, it's my old cell phone, which he has some facility with using, so I just got a new one. I called him, he answered, we had two or three sentences of conversation, and that was it.
As I drove the short distance home, I wondered if Sam's mom thought I had been showing off, showing her up. Hey, your kid paces and mutters; mine can answer a phone, sort of. But it was nothing like that for me. I had said to her as we waited, "It's hard. And I have a Sam too." I wanted her to know how badly I empathized, without prying. I hope she got that, and didn't think I was showing off. God knows my son is so far off the mainstream grid that he's probably closer to this mom's Sam than she realizes. I thought to say to her that her Sam reminded me of a young man from my son's Special Olympics basketball program, but I didn't want to force conversation. If my parenting journey is any guide, the stress of these kinds of situations is incalculable, and more than folks not in our world can ever imagine.
Sam was kinda sorta like the legions of folks glued to their headphones as they commute, wait for their appointments, or otherwise kill time. But Sam's non-Beats were more like some kind of intravenous calming potion, piped directly into his eardrums. If they weren't exactly a lifeline for him, it's not a stretch to think that they were for his parents, likely the only thing that could get Sam to wait, even though all he wanted to do was go home.
For parents of special needs kids, a place and a space in which to share the struggles, the joys, the heartaches, the heartbreaks, the triumphs and tribulations of raising extraordinary kids. What works, what doesn't. What holds us and our families together; what threatens to tear us apart. Support, trust, friendship. This is what we promise to each other.
Monday, February 18, 2013
Wednesday, February 13, 2013
Of Fools and Public Forums
A friend steered me today toward a video from a public meeting in my town, in which a woman stood before a microphone imploring school officials to let her exercise her Constitutional right to hire any teacher she wants to tutor her kids. Holy cow. THIS is a woman with no real problems in life.
I watched this foolishness unfold after having spent time on the phone yesterday discussing with his lead teacher my younger son's Voc 2 assessment, in which his IQ was pegged at about 45, and his future prospects for gainful employment were noted as being pretty darn poor, at least based on where he is now.
And then there's another child of mine, walking a rocky path these days. My heart cracks with anguish over some of the struggles, though I also know this is the terrain of that horror chamber known as middle school.
Work challenges from all angles, but I embrace the challenges, because they inspire me to get over, under and around the hurdles, and give me ample opportunity to feel gratitude that my job is not a leisurely, brain-killing stroll from one meeting to another, from one call to another, from one bout of paper processing to another.
I am so in need of a vacation that I can feel it in my teeth. But that's not coming for a while. So I'll live off of caffeine and the hope that I won't be too dog tired to appreciate time off when I actually take some.
I try to find time to daydream about the life I would construct if I could. But when I do, while it has shades of difference from the life I have, the essential features remain unchanged. I don't believe in that nonsense about God giving folks what they can handle. That's just a load of theological horse shit, in my opinion. But speaking of the Constitution, I do believe that some of us just aren't constitutionally cut out to whine about nonsense. We know we don't have time for that, because we've got important people and things to tend to.
I watched this foolishness unfold after having spent time on the phone yesterday discussing with his lead teacher my younger son's Voc 2 assessment, in which his IQ was pegged at about 45, and his future prospects for gainful employment were noted as being pretty darn poor, at least based on where he is now.
And then there's another child of mine, walking a rocky path these days. My heart cracks with anguish over some of the struggles, though I also know this is the terrain of that horror chamber known as middle school.
Work challenges from all angles, but I embrace the challenges, because they inspire me to get over, under and around the hurdles, and give me ample opportunity to feel gratitude that my job is not a leisurely, brain-killing stroll from one meeting to another, from one call to another, from one bout of paper processing to another.
I am so in need of a vacation that I can feel it in my teeth. But that's not coming for a while. So I'll live off of caffeine and the hope that I won't be too dog tired to appreciate time off when I actually take some.
I try to find time to daydream about the life I would construct if I could. But when I do, while it has shades of difference from the life I have, the essential features remain unchanged. I don't believe in that nonsense about God giving folks what they can handle. That's just a load of theological horse shit, in my opinion. But speaking of the Constitution, I do believe that some of us just aren't constitutionally cut out to whine about nonsense. We know we don't have time for that, because we've got important people and things to tend to.
Friday, November 2, 2012
The Upside of a Storm-Tossed Inside
I have kept journals on my kids since they were born, though in recent years, my entries have become more and more sporadic. I often think to write in the journals, but get distracted--typically by the siren call of some electronic device.
But in the aftermath of Hurricane Sandy, that excuse was no longer at hand. In fact, the siren call was to read, play card or board games, and taking advantage of what daylight there was, to write in my children's journals. The last entries in each, I found, went all the way back to May of 2012. I didn't even attempt to capture all that's transpired in the intervening months, nor could I. The journals are memory keepers precisely because my mind doesn't hold memories at all well.
It was surprisingly soothing to sit and write. Old-fashioned. With a pen. On paper. It seems a rare thing these days to be alone with one's thoughts, to have enough quiet so you can hear the stream of ideas and see the stream of images in your own mind. It was a treat to spend time reflecting on these past months, to think of how my kids fared, at school, at camp, at work. Some of the reflections expose the ongoing challenges of parenting, but in reading earlier entries, I am reminded of how if you leave things alone for a time, sometimes, they (re)solve themselves. That is probably more often the case in the fraught relations between parents and children than we realize.
There is nothing profound in these musings other than, perhaps, the implicit gratitude in having a home still to write in, whether by daylight, candlelight, or flashlight. I am haunted by my friend Rebecca's Facebook posting about a Staten Island mother whose children slipped out of her arms during the storm. Holding my children close, in actuality and via the reflections in my journal entries, is a privilege I hope I never take for granted. I hope none of us ever does.
But in the aftermath of Hurricane Sandy, that excuse was no longer at hand. In fact, the siren call was to read, play card or board games, and taking advantage of what daylight there was, to write in my children's journals. The last entries in each, I found, went all the way back to May of 2012. I didn't even attempt to capture all that's transpired in the intervening months, nor could I. The journals are memory keepers precisely because my mind doesn't hold memories at all well.
It was surprisingly soothing to sit and write. Old-fashioned. With a pen. On paper. It seems a rare thing these days to be alone with one's thoughts, to have enough quiet so you can hear the stream of ideas and see the stream of images in your own mind. It was a treat to spend time reflecting on these past months, to think of how my kids fared, at school, at camp, at work. Some of the reflections expose the ongoing challenges of parenting, but in reading earlier entries, I am reminded of how if you leave things alone for a time, sometimes, they (re)solve themselves. That is probably more often the case in the fraught relations between parents and children than we realize.
There is nothing profound in these musings other than, perhaps, the implicit gratitude in having a home still to write in, whether by daylight, candlelight, or flashlight. I am haunted by my friend Rebecca's Facebook posting about a Staten Island mother whose children slipped out of her arms during the storm. Holding my children close, in actuality and via the reflections in my journal entries, is a privilege I hope I never take for granted. I hope none of us ever does.
Tuesday, September 18, 2012
May He Who Is Without Sin...
So here we are in the midst of these deeply serious Days of Awe, a period of introspection, of seeking forgiveness, of turning toward our better selves, of letting go of our sins so we can start a new year on a better footing, with a clean slate, as it were.
But what if we have no sins? What if there is nothing we have done for which we need to seek forgiveness, from either man or God? What if we already embody the highest ideals of human behavior, the greatest aspirations of decency, kindness and the like? If we're already at the top of the mountain, where do we then go?
I thought these thoughts as I worked my way through various prayers while sitting next to my son, Noah. Here is a child, albeit in a young man's body, who has no idea what a sin is. I cannot even explain it to him, as abstractions are beyond his comprehension. When we stood together to cast our sins into flowing water Monday evening, I asked Noah what he did wrong that he was sorry for. He looked at me like I was asking him the oddest question on earth. Just like when I give him pennies to toss in a fountain and ask him to make a wish, Noah hasn't a clue what I mean.
What of someone who is without sin? In my head somewhere I hear this phrase--biblical?--about he who is without sin casting the first stone, or something like that. Funny thing is, Noah truly is without sin, but would never think to cast a stone at or judge another human being. The first would hurt someone (and he knows that's a bad thing to do), and the second is just too abstract.
So what of all these prayers, these apologies, these requests for forgiveness, for a new lease on life, for a chance to do better? They don't apply to my son, which means they don't apply to many other sinless folks wandering our earth. What prayers might make sense for them? What tshuvah--what turning--should they attempt? I am not wise enough to know, but I have a suggestion or two. Perhaps prayers they might utter could go something like this: "God, if you are real, keep me as I am, with all the gentleness with which I have been endowed. Don't let me become cynical, bitter, competitive or judgmental, for those are things that make others ugly, from the inside out. If you could though, could you help me understand a bit more of what people say to me and how they behave? I don't need to be like everyone else, but if I could turn toward them a little, with a little more comprehension, maybe I would be a little less lost, a little less dependent, and a little more on a path where more people could recognize me as their companion."
Since Noah doesn't know what a prayer is, and why we might utter one, I will keep that one for him, and will hope that if there is a God, that God is listening. Above all, I hope the prayers of the sinless can be heard. And answered.
But what if we have no sins? What if there is nothing we have done for which we need to seek forgiveness, from either man or God? What if we already embody the highest ideals of human behavior, the greatest aspirations of decency, kindness and the like? If we're already at the top of the mountain, where do we then go?
I thought these thoughts as I worked my way through various prayers while sitting next to my son, Noah. Here is a child, albeit in a young man's body, who has no idea what a sin is. I cannot even explain it to him, as abstractions are beyond his comprehension. When we stood together to cast our sins into flowing water Monday evening, I asked Noah what he did wrong that he was sorry for. He looked at me like I was asking him the oddest question on earth. Just like when I give him pennies to toss in a fountain and ask him to make a wish, Noah hasn't a clue what I mean.
What of someone who is without sin? In my head somewhere I hear this phrase--biblical?--about he who is without sin casting the first stone, or something like that. Funny thing is, Noah truly is without sin, but would never think to cast a stone at or judge another human being. The first would hurt someone (and he knows that's a bad thing to do), and the second is just too abstract.
So what of all these prayers, these apologies, these requests for forgiveness, for a new lease on life, for a chance to do better? They don't apply to my son, which means they don't apply to many other sinless folks wandering our earth. What prayers might make sense for them? What tshuvah--what turning--should they attempt? I am not wise enough to know, but I have a suggestion or two. Perhaps prayers they might utter could go something like this: "God, if you are real, keep me as I am, with all the gentleness with which I have been endowed. Don't let me become cynical, bitter, competitive or judgmental, for those are things that make others ugly, from the inside out. If you could though, could you help me understand a bit more of what people say to me and how they behave? I don't need to be like everyone else, but if I could turn toward them a little, with a little more comprehension, maybe I would be a little less lost, a little less dependent, and a little more on a path where more people could recognize me as their companion."
Since Noah doesn't know what a prayer is, and why we might utter one, I will keep that one for him, and will hope that if there is a God, that God is listening. Above all, I hope the prayers of the sinless can be heard. And answered.
Tuesday, August 21, 2012
Just Another Manic Sunday
I forget how much I love the country until I am there again. And then I am deeply in love. This past weekend, I got to share that love with my kids, all of whom joined us for the weekend. OK, so Sam slept quite a bit, Ariel watched way too much TV between fishing outings, and Noah, well, he just needed to rest. But he also had a breakdown of sorts. Not even sure what triggered it. It was one of those manic episodes, where he cried and was inconsolable for a long time, and later the same day had bouts of manic laughter and silliness, a la The Joker, sort of.
Len played tennis with Sam, which gave Len great joy. I hope Sam experienced some of the same. Watching Ariel fish was a highlight for me. And Noah's hole-in-one on the first hole of mini golf was a cause of much merriment and bemusement. Len and I went on an early morning--and initially VERY cold and foggy rail trail ride, but what a great way to start the day. Wish I had a trail nearer by, as it's just great to cruise along past farms and streams and lakes, and to breathe in sweet, untainted air.
Coming home was a drawn out process, a kind of leisurely wending our way back. We stopped for lunch at an outdoor cafe, and it was surprisingly hot in the sun. We passed a local bike shop and Len and I stopped in, had odometers affixed to our bikes, and treated ourselves to new helmets.
There's always that "holy cow how much dirty laundry do we have??" reaction when we come home, but it was compounded this time by the fact that we had Noah's camp duffel with us. But that's part of summer's routine and tradition as well, it seems.
It's hard to know, once your kids reach a certain age, how long they'll deign to spend even part of a summer with you. So I try to remember to treasure the moments, especially the silly ones, like dinosaur feet, kids quiz show, competitive mini golf, bladder busters, and just being around one another, however haphazardly.
As the school year approaches again, I try not to anticipate the tightening in my stomach, the worries about already being unprepared, disorganized, and somehow behind. I just want to find a way to hold onto the slower pace, lazy days, and happily diminished expectations of summer.
Len played tennis with Sam, which gave Len great joy. I hope Sam experienced some of the same. Watching Ariel fish was a highlight for me. And Noah's hole-in-one on the first hole of mini golf was a cause of much merriment and bemusement. Len and I went on an early morning--and initially VERY cold and foggy rail trail ride, but what a great way to start the day. Wish I had a trail nearer by, as it's just great to cruise along past farms and streams and lakes, and to breathe in sweet, untainted air.
Coming home was a drawn out process, a kind of leisurely wending our way back. We stopped for lunch at an outdoor cafe, and it was surprisingly hot in the sun. We passed a local bike shop and Len and I stopped in, had odometers affixed to our bikes, and treated ourselves to new helmets.
There's always that "holy cow how much dirty laundry do we have??" reaction when we come home, but it was compounded this time by the fact that we had Noah's camp duffel with us. But that's part of summer's routine and tradition as well, it seems.
It's hard to know, once your kids reach a certain age, how long they'll deign to spend even part of a summer with you. So I try to remember to treasure the moments, especially the silly ones, like dinosaur feet, kids quiz show, competitive mini golf, bladder busters, and just being around one another, however haphazardly.
As the school year approaches again, I try not to anticipate the tightening in my stomach, the worries about already being unprepared, disorganized, and somehow behind. I just want to find a way to hold onto the slower pace, lazy days, and happily diminished expectations of summer.
Monday, August 6, 2012
Ultimate Zen Mama
Calm, cool and collected are probably not the adjectives I would typically attach to myself. Passionate, opinionated, yup, got a lock on those. But the calm thing, not so much. Not until lately, that is. Cannot tell if this is cumulative fatigue kicking in, such that I'm just too darn tired to kick up much of a fuss about anything, the advent of some kind of long-sought wisdom, maturation, or the general byproduct of aging, but I'm finding that things that might have--would have?--rattled me a few years ago or even less, kind of blow past.
Examples: found out by accident that my daughter's sleep away camp was without power for several days, in the middle of what is probably our hottest summer on record. It's a low-tech and lovely camp, so this meant candle light, gathering around the generator in the dining hall, trucking in bottled water for tooth brushing and washing, and hauling water from the lake so the toilets could be flushed. I heard this litany from one of the administrators and I thought, "Inconvenient, but kinda cool. Throwback times. Humbling to be reminded of how utterly dependent we are on the things on which we are utterly dependent. But we can adapt fine." Not that I would necessarily have done anything a year or two ago if I'd heard the same story, but I was totally calm, unworried, unharried. Just assumed my daughter would manage. And that the power would eventually come back on. As it did.
More to the point, hired a new housekeeper when I went back to work full-time at the end of June. Had my doubts because she seemed too competent--and offered to cook. Showed up for the interview with her Ipad and printed reference letters. But ok, she actually seemed to want this part-time, largely housekeeping job. Then her uncle died and she needed a day off for the funeral. Then she wanted to visit her daughter in Virginia. Then her mother supposedly died. After which, she just went AWOL. At a different age/stage of life I would have been frazzled and frantic, worried about how I was going to get to work and have coverage at home. But now my kids are older (and presently in camp), and I'm just glad she went AWOL now, so I could replace her before school starts. And it took me a whole day to do so. Now I just want my house key back. Or I'll just deal with the aggravation of changing the lock.
Then there were the pleading "I want to come home" letters from my daughter with the cast-encased broken wrist. It must truly be frustrating to be in summer camp (second half) with your forearm in a cast, but it ain't the end of the world. I got tough during one teary phone call about a week ago. Told her we could not--would not--pick her up and bring her home. It's not the end of the world and she'll just have to deal. Didn't feel the guilt I normally would have. Felt instead that she needed a reality check. I'm no jumping bean mama who runs to the rescue every time my kids kvetch. And lo and behold, when I spoke to her today in the infirmary, where she's nursing a low-grade fever and a wet cough, she sounded good, all things considered. Color War had broken noisily outside, and she found out that she was on the White Sesame Street Team (vs. Blue Muppets Team). Good to hear the enthusiasm in her voice. And one of the counselors had brought her a Hunger Games book to read.
Not sure if it's age of life, stage of life, or what. But this Zen Mama thing is pretty great. I feel it at work too, where things that might have rattled my cage some time back just blow by. I can honestly say that however things go at work, they go, and I'm ok with that. Will do my work with pride and integrity, as I always do. If it's good, great. If not, hey, no job defines me, and it ain't the end of the world...
Examples: found out by accident that my daughter's sleep away camp was without power for several days, in the middle of what is probably our hottest summer on record. It's a low-tech and lovely camp, so this meant candle light, gathering around the generator in the dining hall, trucking in bottled water for tooth brushing and washing, and hauling water from the lake so the toilets could be flushed. I heard this litany from one of the administrators and I thought, "Inconvenient, but kinda cool. Throwback times. Humbling to be reminded of how utterly dependent we are on the things on which we are utterly dependent. But we can adapt fine." Not that I would necessarily have done anything a year or two ago if I'd heard the same story, but I was totally calm, unworried, unharried. Just assumed my daughter would manage. And that the power would eventually come back on. As it did.
More to the point, hired a new housekeeper when I went back to work full-time at the end of June. Had my doubts because she seemed too competent--and offered to cook. Showed up for the interview with her Ipad and printed reference letters. But ok, she actually seemed to want this part-time, largely housekeeping job. Then her uncle died and she needed a day off for the funeral. Then she wanted to visit her daughter in Virginia. Then her mother supposedly died. After which, she just went AWOL. At a different age/stage of life I would have been frazzled and frantic, worried about how I was going to get to work and have coverage at home. But now my kids are older (and presently in camp), and I'm just glad she went AWOL now, so I could replace her before school starts. And it took me a whole day to do so. Now I just want my house key back. Or I'll just deal with the aggravation of changing the lock.
Then there were the pleading "I want to come home" letters from my daughter with the cast-encased broken wrist. It must truly be frustrating to be in summer camp (second half) with your forearm in a cast, but it ain't the end of the world. I got tough during one teary phone call about a week ago. Told her we could not--would not--pick her up and bring her home. It's not the end of the world and she'll just have to deal. Didn't feel the guilt I normally would have. Felt instead that she needed a reality check. I'm no jumping bean mama who runs to the rescue every time my kids kvetch. And lo and behold, when I spoke to her today in the infirmary, where she's nursing a low-grade fever and a wet cough, she sounded good, all things considered. Color War had broken noisily outside, and she found out that she was on the White Sesame Street Team (vs. Blue Muppets Team). Good to hear the enthusiasm in her voice. And one of the counselors had brought her a Hunger Games book to read.
Not sure if it's age of life, stage of life, or what. But this Zen Mama thing is pretty great. I feel it at work too, where things that might have rattled my cage some time back just blow by. I can honestly say that however things go at work, they go, and I'm ok with that. Will do my work with pride and integrity, as I always do. If it's good, great. If not, hey, no job defines me, and it ain't the end of the world...
Thursday, July 26, 2012
Moving at Warp Speed
I continue to be surprised at myself, at how I seem to skip over things that are really significant. I am trying to rectify that here, albeit a bit belatedly.
I went back to work full-time, five weeks ago. I am so tired from it that I feel literally drained. Stick a pin in me and nothing will come out. Whatever was propping me up leaked away. I'm not doing manual labor, toiling in a coal mine, but I don't think I could be more exhausted if I were.
My day begins shortly after 6 a.m. I arrive at work before 8 a.m. and I have typically been leaving the office around 6p.m., without leaving the building during the day. There have been so many meetings, and the pace is so quick. So many people to get to know, so many programs with which to familiarize myself, so many acronyms to master. It all just feels overwhelming. And I just feel too old to start over like this. And yet...
I feel very energized by the work, by the expectations. There is too much to do, too much to keep track of. But I want to do it. I want to do well. I want the people who hired me to be glad they did. And that is a good feeling, at my age and stage of life.
I am so pleased that I started this job while two of my kids were in camp. Though I feel the loss of summer leisure a bit, juggling this and the start of a new school year at the same time simply would have been untenable. At least with summer under my belt, I will arrive at fall a bit out of the starting gate at work, and hopefully less stressed on the home and school fronts.
In the end, I am grateful to have this chance. But I also understand why government seems to attract so many youngish types. They not only have the ambition, they have the energy. This pace is not made for folks of a certain age, comme moi...
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