It's been a while since I've had an update; it's not been for the lack of activity so much as the lack of time to sit down, reflect, and write. The days are packed, and I'm re-evaluating current programs for both kids.
Nic is doing well in 7th grade, in spite of himself. Predictably, Executive Function is tripping him up, as is his lack of social finesse. But he's gone to two dances so far this year, bowls, swims, plays soccer and just started CYO basketball. I'm trying to talk him into giving wrestling a try.
Gabriel takes violin and piano lessons in addition to scouts (top popcorn seller in his Pack for the second year in a row; top seller in his den third year in a row). bowling (no bumpers: in Nic's league this year), swimming and soccer. He starts CYO basketball next month.
Sometimes, the social deficit thing overwhelms me. I remind myself constantly to stop comparing; no one is on this particular road but me and my boys; everyone else has his or her own journey, and I don't know what their journeys are about. So stop.
It's so hard to stop when the grass looks greener on the other side of the driveway. But I must.
I can almost hear every teacher I ever had telling me, "Keep your eyes on your own paper."
Yeah. It's like that.
I am amazed at how much ground we've covered; I am painfully aware of how much farther we need to go.
And there is no choice but to keep going.
Sunday, November 11, 2012
Tuesday, October 23, 2012
Guest Blog today
It's been a busy little while here, but I am happy to introduce Heather, who is here to guest blog in my stead. Thanking her in advance for sharing her courageous story!
The words, "You have cancer" flood your being with intense fear. The first time I heard that dreadful phrase was during a point in my life when everything seemed perfect. I'd just given birth to a healthy and beautiful baby girl a few months before, and here I was, being told that I've got a deadly illness. I was diagnosed with pleural mesothelioma, a form of cancer that comes from exposure to asbestos.
My first thought was, "Isn't asbestos illegal?" That's also what people usually ask me when I tell them. The other thing I'm asked is where I had been exposed. Unfortunately, the first question is answered with a resounding, "No." Asbestos is not illegal or banned. To answer the second question, I tell them I was exposed on a secondary basis. My dad worked around asbestos. He did a lot of work on drywall, mudding, sanding and taping it. The resulting dust got on his clothing and in his vehicle, which he inevitably brought home with him. We'd considered the white dust to be innocuous, but in reality, it was heavily laden with asbestos particles.
I was diagnosed at the relatively young age of 36, and according to the Mayo Clinic, at the time, there was only one other case of it in such a young person. The majority of mesothelioma cases consisted of older men who did skilled labor. HVAC, plumbers, electricians, mechanics and military personnel working on ships were all frequently exposed to asbestos due to the nature of their jobs. Later on, alarming numbers of women began developing the disease. These were mostly housewives who were exposed to asbestos from doing their husband's laundry and cleaning up the contaminated dust. Shaking out laundry, sweeping and vacuuming would send a plume of carcinogens into the air where they could easily be inhaled. Many women who got sick also did clerical work in schools that were heavily contaminated.
These days, however, a new round of mesothelioma victims is emerging. When I was diagnosed, I was at the forefront of what would become a frightening new trend. Increasing numbers of young people are coming down with this aggressive disease, even children. Kids who attended school in buildings with decaying asbestos tile and played in contaminated insulation in home attics. Kids, who excitedly jumped into their father's loving arms when he'd come home from a hard day of work, then don his asbestos-covered jacket to protect their clothes while feeding the animals. Even kids who spent quality time with their dads after the workday was over. Sadly, the more I immerse myself in the mesothelioma world, the more I'm coming across young victims. These are people in their 20s and 30s who are just getting started in life. They're men and women who are beginning relationships, marriages, jobs and families, only to feel like it's all being ripped away from them. Soon enough, the only thing they can focus on is fighting for their lives.
The upside to all of this is that medical advances are improving the ability to treat mesothelioma. Greater numbers of victims are beating the illness. Being told you've got cancer is an earth-shattering revelation, but I, and many others with mesothelioma, continue to retain hope. We unite under a common cause to share experiences, offer each other support and find a shoulder to cry on when things aren't going well. We also celebrate the victories when they occur. Some may ask why I share my story. My answer is to improve awareness. Without that, there will be no change. If telling my story helps someone who was just diagnosed, then I've done the right thing.
Mesothelioma at 36
The words, "You have cancer" flood your being with intense fear. The first time I heard that dreadful phrase was during a point in my life when everything seemed perfect. I'd just given birth to a healthy and beautiful baby girl a few months before, and here I was, being told that I've got a deadly illness. I was diagnosed with pleural mesothelioma, a form of cancer that comes from exposure to asbestos.
My first thought was, "Isn't asbestos illegal?" That's also what people usually ask me when I tell them. The other thing I'm asked is where I had been exposed. Unfortunately, the first question is answered with a resounding, "No." Asbestos is not illegal or banned. To answer the second question, I tell them I was exposed on a secondary basis. My dad worked around asbestos. He did a lot of work on drywall, mudding, sanding and taping it. The resulting dust got on his clothing and in his vehicle, which he inevitably brought home with him. We'd considered the white dust to be innocuous, but in reality, it was heavily laden with asbestos particles.
I was diagnosed at the relatively young age of 36, and according to the Mayo Clinic, at the time, there was only one other case of it in such a young person. The majority of mesothelioma cases consisted of older men who did skilled labor. HVAC, plumbers, electricians, mechanics and military personnel working on ships were all frequently exposed to asbestos due to the nature of their jobs. Later on, alarming numbers of women began developing the disease. These were mostly housewives who were exposed to asbestos from doing their husband's laundry and cleaning up the contaminated dust. Shaking out laundry, sweeping and vacuuming would send a plume of carcinogens into the air where they could easily be inhaled. Many women who got sick also did clerical work in schools that were heavily contaminated.
These days, however, a new round of mesothelioma victims is emerging. When I was diagnosed, I was at the forefront of what would become a frightening new trend. Increasing numbers of young people are coming down with this aggressive disease, even children. Kids who attended school in buildings with decaying asbestos tile and played in contaminated insulation in home attics. Kids, who excitedly jumped into their father's loving arms when he'd come home from a hard day of work, then don his asbestos-covered jacket to protect their clothes while feeding the animals. Even kids who spent quality time with their dads after the workday was over. Sadly, the more I immerse myself in the mesothelioma world, the more I'm coming across young victims. These are people in their 20s and 30s who are just getting started in life. They're men and women who are beginning relationships, marriages, jobs and families, only to feel like it's all being ripped away from them. Soon enough, the only thing they can focus on is fighting for their lives.
The upside to all of this is that medical advances are improving the ability to treat mesothelioma. Greater numbers of victims are beating the illness. Being told you've got cancer is an earth-shattering revelation, but I, and many others with mesothelioma, continue to retain hope. We unite under a common cause to share experiences, offer each other support and find a shoulder to cry on when things aren't going well. We also celebrate the victories when they occur. Some may ask why I share my story. My answer is to improve awareness. Without that, there will be no change. If telling my story helps someone who was just diagnosed, then I've done the right thing.
Sunday, October 14, 2012
Waiting for Grace
A couple weeks ago, I couldn't shake the feeling that something really bad was going to happen. Didn't know what or how, just that something bad was coming.
I'm in it, now. It's not anything I could have predicted, and really, there's not much I could have done in any case. There's a certain level of peace that comes with that.
But the other side of the coin is that sheer terror that comes with the realization that I may now be living my new normal, which comes with incapacitating pain.
I'm not a afraid of the pain; I'm afraid of the spiritual and emotional erosion that comes with it. And of course, there's always the fear that I am no where near as bad as it's going to get.
So today, with my shoulder singing its siren song, I found myself telling my kindergarteners that I was waiting for grace. I have a Grace in the room, and she asked why I was waiting for her.
So I found myself describing what it felt like to have my arm in a sling (they did ask), and while I talked, I reflected on the what and why of pain, what lessons there are to be learned, and finding grace and peace in the spaces between the pain.
Somehow, I feel like I have leveled up to a whole new set of challenges. And I pray to be equal to them.
I'm in it, now. It's not anything I could have predicted, and really, there's not much I could have done in any case. There's a certain level of peace that comes with that.
But the other side of the coin is that sheer terror that comes with the realization that I may now be living my new normal, which comes with incapacitating pain.
I'm not a afraid of the pain; I'm afraid of the spiritual and emotional erosion that comes with it. And of course, there's always the fear that I am no where near as bad as it's going to get.
So today, with my shoulder singing its siren song, I found myself telling my kindergarteners that I was waiting for grace. I have a Grace in the room, and she asked why I was waiting for her.
So I found myself describing what it felt like to have my arm in a sling (they did ask), and while I talked, I reflected on the what and why of pain, what lessons there are to be learned, and finding grace and peace in the spaces between the pain.
Somehow, I feel like I have leveled up to a whole new set of challenges. And I pray to be equal to them.
Saturday, September 15, 2012
Latitude
There are rules, and then there's the gray area. Most of us on the spectrum have no problem with the rules; it's the gray area that gets us into trouble.
In the landscape of middle school, the gray that lies between the black and the white often forces arbitrary choices about how close to black or white all that gray is. And any ensuing explosion will be the result of that arbitrary choice. You can almost set a watch by it.
BUT...opportunities exist to explore and negotiate those gray areas for those willing to take the time and energy to do so. And this week, one of Nic's teachers took the initiative to see where this teachable moment would go.
It all started with a classmate, who approached Nic and offered him his place in an activity Nic wanted to participate in. Nic was told he wouldn't be allowed to switch, so he approached his teacher with his dilemma. In the past, he would have been told 'no,' and fireworks would have followed.
Yesterday, the teacher told him, "You committed to this other activity, but if you can find some one to take your place, you may switch."
So Nic approached some girls he knew and explained his dilemma. None of them could switch, but they might know someone who could. So they fanned out, and Nic approached no less than two dozen people before he found some one to take his place.
On the surface, this is no big deal--how often do we find ourselves negotiating this kind of dilemma on a daily basis? We have a committment, we need to trade off, and we make the phone calls, emails, or have the conversations to negotiate our own scheduling conflicts.
But when you talk about a kid who has to LEARN how to do this......and when you give that child the OPPORTUNITY to learn this skill--and practice it, and execute it.....amazing things happen.
The excitement in the teacher's voice as she related these events to me tells me that she finally gets what I've been saying all along--you have to KNOW the teachable moments when you see them, and all things being equal, ALL moments are teachable.
She knew that she could cram several lessons into this particular teachable moment--and she made sure that she did.
And the pride in Nic's voice as he told me in his own words what happened yesterday tells me that none of these lessons were lost on him, either.
And that his peers helped him out? We're getting somewhere. :)
In the landscape of middle school, the gray that lies between the black and the white often forces arbitrary choices about how close to black or white all that gray is. And any ensuing explosion will be the result of that arbitrary choice. You can almost set a watch by it.
BUT...opportunities exist to explore and negotiate those gray areas for those willing to take the time and energy to do so. And this week, one of Nic's teachers took the initiative to see where this teachable moment would go.
It all started with a classmate, who approached Nic and offered him his place in an activity Nic wanted to participate in. Nic was told he wouldn't be allowed to switch, so he approached his teacher with his dilemma. In the past, he would have been told 'no,' and fireworks would have followed.
Yesterday, the teacher told him, "You committed to this other activity, but if you can find some one to take your place, you may switch."
So Nic approached some girls he knew and explained his dilemma. None of them could switch, but they might know someone who could. So they fanned out, and Nic approached no less than two dozen people before he found some one to take his place.
On the surface, this is no big deal--how often do we find ourselves negotiating this kind of dilemma on a daily basis? We have a committment, we need to trade off, and we make the phone calls, emails, or have the conversations to negotiate our own scheduling conflicts.
But when you talk about a kid who has to LEARN how to do this......and when you give that child the OPPORTUNITY to learn this skill--and practice it, and execute it.....amazing things happen.
The excitement in the teacher's voice as she related these events to me tells me that she finally gets what I've been saying all along--you have to KNOW the teachable moments when you see them, and all things being equal, ALL moments are teachable.
She knew that she could cram several lessons into this particular teachable moment--and she made sure that she did.
And the pride in Nic's voice as he told me in his own words what happened yesterday tells me that none of these lessons were lost on him, either.
And that his peers helped him out? We're getting somewhere. :)
Friday, September 7, 2012
Conundrum
Friends.
I always land here when I consider the boys relative successes.
It started with an invite to hubby's boss's house for a swim and a barbecue. "The boys can invite their friends," he wrote.
I stared at the email with pursed lips. Friends? What friends? They have each other. For better or for worse, that's the truth.
As the week progressed, we did much as a family; trip to the beach, kayaking, zip-lining, swimming, fishing, camping. When we sat in our group Sunday morning, the issue I raised (we were all entitled to one) was community acceptance. "We make our own community," I have told hubby time and time again over the years. "They have friends....."
Maybe this is me trying to convince myself.
That night, hubby said, "well, what good is it if they don't go to school together? How do you expect anything to stick? Face it, most kids have friends where they go to school."
Tonight at the ice cream social, we were alone. I don't mind being alone, and looking at my kids, they don't seem to mind, either.
But, I know better. My kids are, after all, my kids, and they have learned to put a good face on for the sake of putting on a good face.
I'm listening to them in the other room together, sharing stories, happy to be home.
Is this good enough?
There are some days that I'm not sure what good looks like, anymore.
I always land here when I consider the boys relative successes.
It started with an invite to hubby's boss's house for a swim and a barbecue. "The boys can invite their friends," he wrote.
I stared at the email with pursed lips. Friends? What friends? They have each other. For better or for worse, that's the truth.
As the week progressed, we did much as a family; trip to the beach, kayaking, zip-lining, swimming, fishing, camping. When we sat in our group Sunday morning, the issue I raised (we were all entitled to one) was community acceptance. "We make our own community," I have told hubby time and time again over the years. "They have friends....."
Maybe this is me trying to convince myself.
That night, hubby said, "well, what good is it if they don't go to school together? How do you expect anything to stick? Face it, most kids have friends where they go to school."
Tonight at the ice cream social, we were alone. I don't mind being alone, and looking at my kids, they don't seem to mind, either.
But, I know better. My kids are, after all, my kids, and they have learned to put a good face on for the sake of putting on a good face.
I'm listening to them in the other room together, sharing stories, happy to be home.
Is this good enough?
There are some days that I'm not sure what good looks like, anymore.
Thursday, August 16, 2012
Listening
Perhaps this is the wrong word, but this is where I begin. Right now I am listening to the sounds of August, and have allowed myself, perhaps for the first time, to fall in love with this month, this moment, this eventide of perfect breezes.
August, for me, has previously been owned by all my baggage. I did once love it, the sounds, the smells, the light in the evening and morning skies. And it I can't believe how good it feels to be back in that moment of love once again. It's been a long time.
I think, perhaps, this is what happens when you finally let go, and really mean it, of everything that ever saddened you or broke your heart. You do heal. You do move on. You do dream new dreams. And you arm for battle and do battle, as needed. What a comfort it is, in some ways, to have lived this long. Because nothing is ever as bad as you think it is, and even if it is, you roll up your sleeves, and you get on with whatever needs getting on with. You do live through it. And you do learn to appreciate the calm between the storms.
A lot of this has to do, I think, with the friend Nic made this week. Even if it doesn't last, this is still something he did on his own, without me.
And now I know for sure that it can happen. Because it did.
And that's good enough for me.
August, for me, has previously been owned by all my baggage. I did once love it, the sounds, the smells, the light in the evening and morning skies. And it I can't believe how good it feels to be back in that moment of love once again. It's been a long time.
I think, perhaps, this is what happens when you finally let go, and really mean it, of everything that ever saddened you or broke your heart. You do heal. You do move on. You do dream new dreams. And you arm for battle and do battle, as needed. What a comfort it is, in some ways, to have lived this long. Because nothing is ever as bad as you think it is, and even if it is, you roll up your sleeves, and you get on with whatever needs getting on with. You do live through it. And you do learn to appreciate the calm between the storms.
A lot of this has to do, I think, with the friend Nic made this week. Even if it doesn't last, this is still something he did on his own, without me.
And now I know for sure that it can happen. Because it did.
And that's good enough for me.
Saturday, July 28, 2012
10 Years After
I'm actually a little premature writing this post; Nic's 10 year dx anniversary is still several weeks away. But, in the eye of eternity, 3 weeks is nothing, and I'm pretty sure what I am moved to write now will still be true on August 15.
Looking back over the last decade to the day that changed everything about our lives, I find myself humbled and grateful by the many teachers, therapists, friends, and strangers whose kindnesses, great and small, have helped my family adapt, adjust, progress, grow and thrive. I still wince when I remember some episodes and encounters with people who were less than kind, and I wince when I think of all the times I lost my temper or composure in the face of unkindness, ignorance, and prejudice.
By the same token, I look on all of our experiences with life on the spectrum with gratitude and wonder, and am floored by the sheer number of blessings that this life has revealed to us. I often pride myself on my ingenuity at all the opportunities I have created for both boys, but at the same time, I know that ingenuity has its roots in the countless conversations I've had with other parents who have already been there, blazed those trails, carried those weights. And I find myself paying it all forward to parents who are just getting to some of the places my boys have already been, lighting their way, guiding their footsteps.
Autism changed our lives forever. But finding those hidden blessings on this long and rocky road has altered the way I live--for the better. I remember a point about 5 years ago where I was quite bitter about the person I had become--I didn't ask for any of this, and this was not the person I was supposed to be, or so I thought.
Then life intervened, various crises needed to be sorted out, and I kind of forgot that thought until yesterday.
If I had the chance to talk to the me from 5 years ago, I'd give her a good shake. And kick her ass, for good measure.
I've had a lot of really good role models to learn well from. And I have had the weight of my own experience to balance what my gut has told me at any given point. And I have lived long enough to know that nothing lasts.
So, as I listen to my chatty young men talk between themselves, I'm thankful that they can talk to one another, that they love each other, and that they have each other. And I am thankful that I have them both. They have made my life a fuller, richer, and much more interesting place than it might be otherwise.
And I can't believe how far he's come. Not that he doesn't still have a long way to go, but that he's where he is now is always a source of amazement.
I can't wait to see what the next 10 years bring.
Looking back over the last decade to the day that changed everything about our lives, I find myself humbled and grateful by the many teachers, therapists, friends, and strangers whose kindnesses, great and small, have helped my family adapt, adjust, progress, grow and thrive. I still wince when I remember some episodes and encounters with people who were less than kind, and I wince when I think of all the times I lost my temper or composure in the face of unkindness, ignorance, and prejudice.
By the same token, I look on all of our experiences with life on the spectrum with gratitude and wonder, and am floored by the sheer number of blessings that this life has revealed to us. I often pride myself on my ingenuity at all the opportunities I have created for both boys, but at the same time, I know that ingenuity has its roots in the countless conversations I've had with other parents who have already been there, blazed those trails, carried those weights. And I find myself paying it all forward to parents who are just getting to some of the places my boys have already been, lighting their way, guiding their footsteps.
Autism changed our lives forever. But finding those hidden blessings on this long and rocky road has altered the way I live--for the better. I remember a point about 5 years ago where I was quite bitter about the person I had become--I didn't ask for any of this, and this was not the person I was supposed to be, or so I thought.
Then life intervened, various crises needed to be sorted out, and I kind of forgot that thought until yesterday.
If I had the chance to talk to the me from 5 years ago, I'd give her a good shake. And kick her ass, for good measure.
I've had a lot of really good role models to learn well from. And I have had the weight of my own experience to balance what my gut has told me at any given point. And I have lived long enough to know that nothing lasts.
So, as I listen to my chatty young men talk between themselves, I'm thankful that they can talk to one another, that they love each other, and that they have each other. And I am thankful that I have them both. They have made my life a fuller, richer, and much more interesting place than it might be otherwise.
And I can't believe how far he's come. Not that he doesn't still have a long way to go, but that he's where he is now is always a source of amazement.
I can't wait to see what the next 10 years bring.
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