Wednesday, October 26, 2011
Some of my very cool friends are working on the coolest project ever - Flummox and Friends, a live-action video series designed to help kids with social impairments develop the skills and understanding they need to navigate the complex world of peer relationship.
It's fast-paced. It's engaging. It's clever.
It's exactly what Bud - and millions of kids like him - need.
But my friends need your help. Please watch the video below. Then click on this link to give what you can to support this extraordinary project and help it come to life. Flummox and Friends will make a real difference in children's lives. It will make a difference in Bud's life.
Flummox and Friends will help reinforce the goals that we have for Bud and the skills that we are working so hard to help him develop. They'll help bolster his confidence, so that when he's ready to seek out meaningful interpersonal relationship with his peers, I know that he will succeed. And when he does - when his peers are really able to know the Bud that I know - when they have that sort of close, reciprocal connection with him that I have - I know exactly what they'll say:
"I have the coolest friend ever."
Please give what you can to help make it happen.
Friday, October 21, 2011
I'll be teaching two classes. In the first, I thought I'd introduce elements that are characteristic of the medium and decisions that bloggers make and debate as they craft their voices and shape their blog personae. I'm thinking about things like:
- The decision to use your real name or a pseudonym, and the pros and cons of each decision. (There have got to be some great posts out there that dissect this issue. Can anyone point me to one?)
- The ethical implications of using other people's names - or, even, other people's stories, even if the names are changed.
- The further implications and considerations for bloggers who write about their children: Where does the blogger's story end and the child's story begin? What rights of privacy should a child automatically be afforded? What happens when the cute story you wrote about naked five-year-old Sally is discovered by the classmates of awkward eighth-grade Sally?
- The many ways that parent-bloggers negotiate and balance the right-to-privacy or safety-and-security issues with the establishment of veritas and the bringing-to-life of the narrative: real names with photos; fake names with photos; real names without photos; fake names without photos - and the potential benefits and pitfalls of each.
- The self-referential nature of blogging - the ongoing narrative, the link-back to previous posts, the assumption that the reader already has - or knows how to find - the backstory, the presumption that there is always backstory.
- The phenomenon of comments - the dialogue that can ensue between author and reader, or between readers - the way that the best, meatiest, most heartfelt, most meaningful part of a post often appears in the comment section.
- The communities that form through blogging - the circles that emerge - the politics of the blogroll - the danger of creating "insiders" and "outsiders" among one's readership. I remember reading a post somewhere long ago that talked about how blogging was like being back in eighth grade - and then reading a response post on a different blog about how blogging is, in fact, nothing like being back in eighth grade. Does that ring a bell with anyone? Can you point me to a link?
- The existence of blog trolls - people who seem to stalk your blog obsessively, waiting for new updates (and the fact that you know about their existence because you have been tracking your blog stats obsessively) - and people who leave nasty, hurtful comments - almost always anonymously, with no reply address, like grenades lobbed through the blogosphere.
- Flame wars and the way that misunderstandings can escalate quickly and divisively, with lines drawn and opinions entrenched within hours.
- The crafting of a blogging persona and the assumption by some that because you are writing about your own life, the blog reflects exactly who you are - and the reality that blog writers shine spotlights on the areas of their lives that they want you to see, leaving the vast majority of their lives - and themselves - in the shadows.
I'd be delighted - and eternally grateful - if you can point me to any blog posts you've read that delve into these subjects and capture well any perspective on them. I'd like to avoid turning these into classes on autism blogging or mommy blogging, so I'd especially welcome suggestions from further afield (though, by all means, I'd be happy to have examples from closer to home as well).
At the end of the first class, I'd like to assign each of the students some reading, asking them to read a post or a series of posts that captures a quintessentially bloggy phenomenon - something that could only happen through writing on the web - that they can showcase them for us in the second class. Some ideas:
- Real-life implications of online writing - how the same things that make for a wonderfully snarky post can really come back to bite their author. I'm thinking, especially, of things like being Dooced (or, fired for blogging about one's job), pointing them here - or more recently, the blogger who found Child Protective Services at her door because of a post that she'd written.
- The collective power of blogopshere - The Bloggess's recent response to spam mail from a PR firm comes to mind, though I'm sure there are examples with greater heft and import (Like...? Help me out here.)
- The equalizing power of the internet and the instant access that blogging can grant to the often unsuspecting blogger - there was some story I read once about a kid with autism who got to meet his country music superstar hero. And, of course, the one in which the autism mom got invited to the White House to share her thoughts and expertise.
And what else? What posts out there capture the essence of blogging? What are the things that happen in the blogosphere like nowhere else? What makes us who we are?
Oh - just thought of another one. There was that blogger who enlisted the blogosphere to help her teach that class...
Wednesday, October 19, 2011
Click here to listen to Melissa Block's recent interview with Dierks Bentley on National Public Radio's All Things Considered. In it, Dierks talks about his latest single, "Home" - a song that pays tribute to the U.S., not by glossing over its troubles, but by acknowledging them. It's a song that reminds us that our country was founded on struggle and challenge, that patriotism should never be blind, and that what we have, despite flaws that can sometimes be overwhelming, is worth preserving, worth repairing, and worth celebrating.
Melissa Block contrasts the messages in "Home" with other songs in the genre, saying, "If you listen to a bunch of recent country songs about America, patriotic songs that came out, especially after 9/11, there was a lot of chest pounding, Jingoistic tone, us versus them."
Dierks responds, "I was trying to write a song that's just honest... That's where you find a real relief, real inspiration, real hope, real understanding of what's going on. I mean, it's easy to sell something to say 'We're number one!' It feels good, but it's not necessarily truthful or really helpful."
To me, the release of "Home" is well-timed as we head into another election season, because it's a reminder that being truly patriotic - being a REAL American - requires us to look at our own mistakes and missteps and misunderstandings, as we try to move forward - together - in a better direction.
Thursday, October 06, 2011
No, I didn't expect that. Not really.
But, damn. He was Steve Jobs. If anyone could have pulled that off, it would have been him.
But it wasn't. And now it never will be. And I'm really, really sad.
It wasn't just that Steve was a genius disguised as an Everyman - like he was just cool Uncle Steve, always showing up for holiday dinners with the hottest new toys. It wasn't even that he singlehandedly made it cool to be a geek, raising the market value for so many of us as we make our way in this world.
It was that Steve Jobs changed my son's life.
Where would Bud be right now if Bill Gates had not had Steve Jobs to engage him in the continual battle of one-upsmanship that made home computing what it is today? Where would he be without the point-and-click technology that Jobs pioneered - the technology that works in absolute congruence with his non-typical brain? For Bud, computers are the one intuitive thing he has in a world that is otherwise almost entirely counter-intuitive. Bud has been computing since he was a toddler, and in all that time, computers have not just given him a sense of competence. They have given him a sense of mastery. They are the arena in which he knows that he is not just on par with his peers; he surpasses them.
And it was Steve Jobs who brought us the iPad, the device that has been transformative for so many children with autism - the device that has given them independence and helped them find their voices. While the iPad has not been quite as life-changing for Bud, it's clear that we have only begun to recognize the possibilities that it holds for him as an educational tool. For now, though, it is the ultimate imagination machine, which Bud uses to experiment with multimedia, casting himself as designer, producer, narrator, and foley artist of his own creations. And where will his iPad take him from here? It will be fascinating to find out.
And the iPod - the single most powerful tool in Bud's arsenal. The iPod is Bud's armor in battle, his passport in interaction, and his solace in times of stress. A quick glance through the pages of this blog would reveal how often the iPod makes an appearance here. A look through our (digital - thanks, Steve) photo albums would show you that the iPod is Bud's personal American Express - he won't leave home without it. Would Bud ever have become the model patient at the pediatric dentist if he hadn't had his iPod to help him self-regulate through those early years of visits? Would he ever have conquered his fear of thunderstorms without his iPod to temper the fury? It is hard to imagine.
Without Steve Jobs's iPod, Bud would probably spend most of his time in the public arena with his fingers in his ears or with sound-blocking headphones standing between him and the rest of the world. From a distance, he would look, to strangers and peers, a little different, a little odd, a little "other." But now, with his iPod in hand and his earphones in place? He just looks like the cool kid that he is.
The iPod is his conversation starter ("Hey, Bud - what are you listening to?"). It is his shelter from the storm. It is his socially acceptable and entirely private way to restore local coherence when the world gets overwhelming, allowing him to replay brief snippets of songs or sound bites, over, and over, and over again, as he reclaims control when his world is too unpredictable, as he restores his own sense of internal order when his external environment seems in chaos. For Bud, it's a life-saver - and a gift that only Steve Jobs could give.
Perhaps most importantly, though, it was Steve Jobs who framed a cultural philosophy that makes the world a safer place for my son to be himself, because it was Steve who challenged us to "think different." And for a child whose brain is designed to think different, that celebration of difference, that trumpeting of both the value and the importance of difference - well... it's everything.
We will miss you, Uncle Steve. The holiday dinner table just won't be the same without you. But, truly, your legacy will continue in ways that even you might never have imagined were possible - and, as we all know, that's really saying something.
And, oh yeah, one more thing: Thank you - from the bottom of my heart.
Sunday, September 11, 2011
I've written before about my dad's Alzheimer's and about the beautiful relationship that he and Bud have. Both of these things have been weighing heavily on my mind this week.
My dad fell on Tuesday. He was alone in the yard when it happened, so we don't know the circumstances, don't know how hard the fall was, don't know how long he was down, don't know what he had to do to get up. An x-ray revealed that he had fractured a rib - a problem for which the only solution is time.
The first days after his fall were frightening, because, as often happens with Alzheimer's, the pain, or the pain medication, or both, transformed his dementia into delirium. When he slept, his sleep was fitful, his hands moving, his legs twitching, and his lips murmuring unintelligibly, but with purpose. When he woke up, he was bewildered and angry - he had things to do, he insisted, and we were keeping him from them.
His condition worsened, his pain so extreme that we were unable to move him. He ate very little. His speech was slow and muffled. His eyes were wild. I was afraid that we were - that Bud was - losing him completely.
The past 24 hours have been transformative, though. A visiting nurse and a home health aide have been in. My sister, my mom, and I have been joined by family friends with experience dealing with situations like this. My dad's pain is being managed. He is more mobile. His eyes are clearer. His dementia is less extreme, allowing him to spend longer stretches of time engaged with us and making his mental forays away briefer. It's clear, though, that we can't leave him unattended at all. Not right now. Maybe not ever again.
So, the big questions - the new realities - are still largely unknown and overwhelming, but for the first time in days, I find that I can exhale a little. I'm starting to reflect on the past week - a week during which I feel like I spent my time vacillating between two postures - flailing action and paralyzed inaction. I flailed my way through my life outside the house - tearing through my to-do lists without being able to prioritize in any meaningful way - applying quick-fix resolution to issues that really deserved more thoughtful consideration, and postponing action on mundane things that could have been more easily settled. And then, when I walked through the door to my house - saw my father in his bed, confronted his labored breathing, heard his muddled speech, looked into his wild eyes - my mind went blank. My to-do list vanished. I felt completely at a loss.
Things are better now, of course, but there is still so much that needs to be done, and I find myself struggling to fight paralysis without starting to flail. But it's hard to know what I should be doing. I feel like I should plan - but for what? for how long? with whom? Without knowing what we're really facing, it's hard to know where to put my energy.
My best cues, though - the most useful bits of wisdom I've gleaned in recent days - have come from the two sources I'd have thought most unlikely - the two people whose expertise I'd clearly underestimated most: Bud and my dad.
Because this week, while I stood looking at my father, trying to fight my paralysis, but feeling the panic rise within me, Bud brushed past me, ran to his grandfather's side, and greeted him joyfully, "Hey-a, Papa! How you doing?"
As I stood worrying about my father's hygiene, concerned about the time he'd laid still in bed, unkempt and unwashed, Bud clamored up beside his sleeping grandfather, nestled in, and said, "I love you soooooo much."
As my father slept and I walked aimlessly around the house wondering what I should be doing, Bud sat in the chair by his Papa's bed, matching Papa's labored breath with his own, slow breathing - his eyes closed, his ankles crossed, sharing the stillness.
As I made room for the professionals who came in to help my father sit, stand, walk, bathe, eat, and I found myself hovering on the periphery, unsure if I was staying on the sidelines for the sake of my father's privacy or because of my own discomfort, Bud settled himself in the center of the action, assuming the roles of both head coach and cheerleader. He sat across from Papa, his arms crossed, intently watching the nurses in action, and chiming in frequently with encouragement and support: "Papa, the nurse is going to give you a check-up and it WON'T. HURT. ONE. BIT," and "You're doing great, Papa!" and "I'm very proud of you."
As my father's color returned and his breathing normalized and he settled into an easy chair, I collapsed in on myself, focused on my own relief, but Bud sidled up to Papa, stroking his arms and patting his head.
And my father. My father. Even when things were at their worst - when his eyes were their wildest - when he seemed unsure of where he was, how he got there, and what in the world was happening to him - he consistently recognized Bud. When the rest of us could barely get a response from him, my father still brightened when Bud entered the room. The fog lifted temporarily and my father spoke more clearly than he had all day: "Hey, buddy. How was your day?"
Both my heart and my mind are still trying to process it all. But the messages, I think, are clear.
From Bud, the message is this: Be there for Papa. Stop focusing on who he was and on who you want him to be. See who he IS. Love who he is. Stop thinking and trying and pushing and planning and doing - and just BE with him. Be present to him. Just be there.
From my father, the message is this: Be there for Bud. Set aside your own confusion, forget your own fear, step outside your own pain, and be there for him. Stop trying to plan for, to warn about, to protect from, and just BE with him. Be present to him. Just be there.
And I'm trying. I'm trying to be there. I am. I have two extraordinary role models - two exceptional teachers.
I'm a slow learner.
But I'm trying.
This post originally appeared at Hopeful Parents on September 11, 2010.
Some weeks ago, when I learned that I’d been assigned to write for Hopeful Parents on the eleventh day of every month, it occurred to me that I would be posting on the eleventh of September. September 11. I wondered how I would write an upbeat, positive post on such a tragic anniversary. To acknowledge the date would be somber; to ignore it, when I have been specifically designated THIS day to post, might seem disrespectful.
About a week ago, on a day when the stress of Bud’s transition to a new school year manifested in hard-to-manage behavior at home, it occurred to me that my posting date was fast approaching. I wondered how I would write an upbeat, positive post for Hopeful Parents when I was not feeling like a very hopeful parent. To acknowledge my frustration and self-doubt would be somber; to ignore it would be disrespectful to the mission of this site.
And that led me back to thinking about 9/11.
On that day, when the first plane hit the tower, Bud and I were dancing. We were in a Kindermusik class full of parents and toddlers. We were surrounded by baby laughs and mommy hugs, while hundreds of miles away, inconceivable tragedy was unfolding.
I think about those contrasting images often.
They are images that, through their contrast, capture my world view. It’s a world view that may have started to develop in my high school science class, because it seems to have its roots in Newtonian physics: To every action, there is an equal and opposite reaction.
In my own mind, it has become this: The universe seeks balance.
It’s a theme that plays out consistently in my life.
I look at pictures from Bud’s second birthday party, held four days after September 11, 2001. The faces on the adults are ashen, fixed in still-fresh shock and disbelief. And yet, there we were, gathered with joy, gathered in love, gathered because a two-year-old’s birthday mattered, despite the horror we were all still trying to process. We gathered to meet our grief with an equal and opposite reaction.
I think about Bud’s birth itself – the birth in which his twin brother was stillborn. I think about the hours and days that followed – hours and days of profound sadness, made livable - made powerfully joyful - by the healthy baby boy I held in my arms. Equal and opposite.
I think it’s the way that each of us processes the balance – the way we frame the moments and events in our lives that stand together in juxtaposition – that really defines our experience. I could, I suppose, reflect on my life and feel cheated - angry that the sorrow of x diminished the joy of y. Instead, I reflect on my life and feel fortunate - grateful that the joy of y sustained me through the sorrow of x.
So, I cling to my memories of the earliest moments of 9/11 - those moments in which something was stolen from us that we’ll never reclaim - and I remember the dancing. I remember the joy – and I believe that the people who were dancing, who were laughing, who were kissing, who were living with compassion and kindness at that first terrible moment of impact, created an equal and opposite force that kept us all moving forward, that allowed us to preserve something that can never be stolen.
It’s the same world view that keeps me moving forward through Bud’s darkest days of anxiety and aggression – because as challenging as his behavior can be, as powerless as I can feel in the face of it, I know without question that soon we will experience equal and opposite progress – equal and opposite joy.
The universe seeks balance. Better days are coming. And there’s nothing more hopeful than that.
Thursday, September 08, 2011
I've also gotten feedback that the posts are difficult to find and that people stumble upon them after they Google something like "talking to kids about autism" and are directed through a circuitous route of posts that reference each other, until they land here.
So this is a housekeeping post. The title should help bump it higher in the Google hit list and, therefore, help people find the blog more easily. And if you've landed here because you've Googled something like "explaining autism to kids" or "helping children understand autism," then I encourage you to click here to read the whole series.
(And also: Welcome! Come back soon! We also have a Facebook page...)
Sunday, August 28, 2011
I'm not talking about Hurricane Irene, though we were, indeed, prepared for that, too - the lawn furniture in, the kitchen stocked with bottled water, the counters covered with flashlights and batteries, the cell phones charged, the bathtub filled to the top in case the pump house flooded. Luckily, though, we survived Irene unscathed.
The real preparation that has had our attention over the past days, weeks, and months, is the preparation for middle school, which was due to start tomorrow, but (thanks, Irene) will instead start on Tuesday. The middle school prep really started in early spring, when Bud's wise and wonderful teacher, Ms. Parker, arranged for her daughter Gretchen - a student at the middle school - to Skype with Bud. And so, Bud became introduced to the middle school from the comfort of his known-and-familiar elementary school, through a medium that gives him great comfort - the computer. Through several introductory meetings, Gretchen talked to Bud, then picked up her laptop and gave him tours of the building, introducing him to people she met along the way. Those introductions were so successful, in fact, that when I arrived for my first tour of the facility in late spring and was introduced to teachers, staff, and administrators, person after person said to me, "Oh, Bud? I know Bud! I Skyped with him!"
As the school year wound up, energy focused on helping the entire fifth grade start making the transition to middle school. Visit days were scheduled - and for Bud, pre-visit days were scheduled to help make those larger-group events even more successful. His team developed an Extended School Year plan for the summer that focused on both continuity and transition, with time spent at both the elementary school campus and the new middle school. By the time his summer program ended, Bud was not only comfortable at the middle school, but he was also starting to feel at home there.
The final week before the start of school was not included in his Extended School Year program, of course, because it's a time when staff and teachers are focused on professional development and on their own preparations for the first weeks of school. I knew, though, that a week of down time would put Bud at risk of losing momentum, of sliding back from the progress he'd made, and of falling prey to the anxiety of the unknown. So, when the team met last spring, I pitched them my idea for that final week of summer: Operation Continuity.
The plan was simple: Bud and I would arrive at the middle school at the regular opening time with a task list in hand: give mom a tour of the building, set up your locker, bring supplies to your classroom. We'd stay less than a half hour, but it would 1) help us hammer out a morning routine that requires us to leave the house 45 minutes earlier; 2) keep him in the get-up-and-go-to-school-each-day routine; and 3) allow him to see the building transform from the empty hallways in which he'd spent his summer to the bustling center of activity it would become on opening day. All I needed, I promised the team, was their blessing. No one had to develop the activities or be on hand to meet us or anything else. I just need to know that no one would stop us at the door or tell us we had to leave. They gave us the green light without hesitation.
So last week, Bud and I took the middle school by storm. He toured me through the building and I got to see how comfortable he is there - how well he knows the building and how at ease he is with the people. We decorated his locker with pictures of Dierks Bentley and he practiced opening and closing the padlock we'd purchased to avoid the frustration that a combination lock would likely bring. We watched as the O.T. room came together. We reviewed his picture schedule, already posted on the wall.
And then, toward the end of the week, through pure serendipity, the stars aligned.
His fourth grade teacher, the incredible Ms. Walker, e-mailed me on Wednesday night. She said she'd be at the middle school for a workshop in the morning and she wondered if she could come by to have Bud show her his locker. I was delighted at the idea of having one more transition point - one more person to help usher him into this new environment.
Ms. Walker met us near his home room in the morning and they had a happy reunion. She was appropriately enthusiastic about everything he showed her, and he was happy to play tour guide. Ms. Walker asked Bud if he would help her find the room for her workshop and he led her up the stairs to the cafeteria, which was already buzzing with the sounds of teachers catching up with each other after a summer away.
Then, suddenly, as if by magic, the middle school hallway filled with familiar elementary school faces – faces of people who had been his lifelines for the past six years - his former teachers, his paraprofessional aides, his speech-language pathologist, his occupational therapist, his school nurse - all greeting him with hellos and hugs and high fives.
It was like somebody set off a love bomb. The air was infused with positivity. A circle formed around Bud - a circle full of people genuinely delighted to see him - people enthusiastic about his new school - people bursting with pride and warmth and excitement. Bud was so high he nearly left the ground.
He talked about that moment for the rest of the day. He called his dad to report on it: “There were twenty teachers! There were HUNDREDS of them!” And at bedtime, as we snuggled together and reflected on the day - a day that was good in lots of other ways - time spent with a favorite babysitter, a chance to swim at the college pool, computer time at mom's office - I asked him what the best thing was that day.
"The best thing..." he said, pausing with a far-away look. "The best thing..." He fell silent and I waited, reminding myself that if I really wanted an answer I'd need to stay silent for at least 45 seconds. "The best thing..."
"The best thing was the teachers," he said.
His take-away message was clear: he finally knew for certain that his long-held fear would not be realized. He is leaving the elementary school, yes. But he is not losing the people who have become so important to him. They are still there; they are still connected. As he moves on to the middle school, he is simply adding to his village.
We're prepared. Bud starts middle school on Tuesday. And he's going to rock it like a hurricane.
I've been testing out another forum, though, and have created a MOM-Not Otherwise Specified Facebook page. It's a modest little site, but I'm checking in more regularly there and I'm finding that it's much easier to dash out a 420-character status update than to do the heavy lifting of string words together to make sentences, sentences to make paragraphs, and paragraphs to make posts.
If you'd like to check it out - and, I know - Facebook - I know. And yes, I saw The Social Network. But, still - if you'd like to check it out, you can follow me by clicking here.
I'm still experimenting. I'm still not sure how I feel about it. Or, as I posted in another forum:
Increasing the online presence without actually composing whole paragraphs. Thoughtful expansion or indolent cop-out? You be the judge...
Wednesday, July 06, 2011
He taught me how to challenge myself and how to take risks.
He taught me the value of making difficult choices with integrity and the importance of doing the right thing instead of the popular thing.
He taught me how to work hard, how to persevere, and how to celebrate my accomplishments.
He taught me how to fail.
He taught me how to rely on other people and how to be a person on whom others could rely.
He taught me that it's possible to be both critical and kind - and that, in fact, it's often impossible to be the latter without also being the former.
He helped me to see that all the world really IS a stage, and he taught me to stand proudly in the spotlight, graciously in the shadows, and patiently in the wings.
I would not be successful in the job that I have, I would not approach parenting the way that I do, I would not be the person whom I have become, if it were not for him.
Rest in peace, Father. The world is a better place because of the hundreds of young lives you changed.
Thank you for making my life one of them.
Sunday, June 12, 2011
Philosophically, my affiliation with Hopeful Parents was a natural fit, but structurally, it just didn't work for me. I've always viewed blogging - used blogging - as an outlet - a way to process through complicated issues and emotions in the moment. I've had long stretches of time when I didn't write at all. I've had times when I seemed to be writing constantly. I have come to trust the flow - to know when I need to be here - to know when I need to stay away.
So, the monthly deadline at HP was a jarring reality to me. Even when the deadline was weeks away, it hovered on my radar, accelerating my heart rate and making me feel unequal to the task. When I was inspired to write about a particular topic, I would look at the calendar and think "I'd better not post this on my blog right now. What if I don't have another idea before the 11th?" Then, instead of writing and posting and engaging with this online community on whose insight I have come to depend, I would hold the thought, stop the internal composition, and wait. Inevitably, by the time the HP deadline arrived, that original thought was gone - or was stale - or was representative of a moment that had passed. So I would develop something else to post at Hopeful Parents, and leave this page largely untouched - frozen and static.
As you might imagine, after a few months of that, I lost my blogging center. I fell out of the groove. It stopped being fun.
So, I'm walking away from the have-to and I'm hoping that the want-to will find me again. I think it will. I'm excited about the summer ahead. For the first time in a couple of years, I'm taking a break from teaching in the fall, so I will not spend the summer building courses. Instead, I plan to dust off some writing projects that have been sitting on the shelf, calling to me - their voices, lately, louder and more insistent. And maybe - maybe - with them as a catalyst, I will find myself here more often, too. Not because I have to be, but because I want to be.
I'm not sure if it will happen. But, maybe - hopefully - it will.
Friday, June 10, 2011
I'd like you to have a copy of the e-mail I sent this afternoon to Bud's IEP team - a combination of classroom teachers and special ed staff from the elementary school he is leaving and the middle school he will enter in the fall. It's the kind of letter that every special needs parent wants to be able to write, but - based on what I've heard from parents whose IEP meetings sound more like armed warfare than like collaborative planning sessions - usually can't.
I'm posting it here for two reasons - first, to publicly thank the team that we are so lucky to have, and second, to issue a challenge to people on IEP teams across the country - classroom teachers, special educators, and administrators.
My challenge is this: As you begin the IEP cycle each year, use this letter as an end goal. Start your planning process, structure your meetings, and implement your ideas with the goal that every parent who sits at your table will be able to leave the room and write a letter like this.
I know that it's possible, because I've seen it done, over and over and over again. Like every district everywhere, my district is under-funded. The special ed budget has been cut. The caseload has grown exponentially, but the staffing has not. And yet, because the members of our team approach their work with care and insight - because they are creative - because they are collaborative - because they listen and learn and seek to understand not just who my child is, but also who he might become - they are able to set a high bar, and then help him soar over it.
You can do it, too.
I just wanted to write to follow up on our IEP meeting this afternoon to tell you how fortunate I feel to work with such an outstanding team. I have friends raising children with autism all over the country, and in recent weeks I’ve heard story after story about them donning their battle gear as they entered IEP meetings, only to emerge hours later, deflated and defeated. In contrast, I walked into today’s meeting with a list of points I wanted to make sure we covered, and in every instance – without exception – someone else on the team raised the issue before I had a chance. I truly believe that the plan we have in place for Bud – and the plan you’ve been implementing with him all spring - is fantastic and puts him in the best possible position as he prepares to make the transition to middle school.
This could be an overwhelming and frightening time for Bud, and for me. Instead, because we have the good fortune to work with people like you – insightful, collaborative, forward-thinking people who truly know and respect my son – it’s an exciting time full of possibilities. I imagine that IEP season is exhausting for you. Please know that your work really matters, and that I appreciate everything you do.
All the best,
Tuesday, May 17, 2011
I know that the 11th of May has come and gone. I know that I made a commitment to post at Hopeful Parents on the 11th of every month. I know.
But knowing it and doing it are not the same thing, are they? And I didn't do it. I know.
Have you read this post from Jess at Diary of a Mom? She talks about pulling back, saying no, scaling down expectations - other people's expectations of her and her expectations of herself. The post resonates with me. (The irony, of course, is that by writing the post, Jess made her deadline for Hopeful Parents, while I... well, we've already been over that, haven't we?)
I'm in a similar place, though: No, I can't teach a class this summer. No, I can't attend that important event. No, I won't be making my deadline. Maybe my priorities are shifting. Or maybe I've just realized that in order to focus on the pressures that demand my attention, I need to abandon the pressures that are really just self-imposed.
Pressure has been on my mind a lot this week, actually. Low pressure, to be exact. Bud is highly affected by weather patterns, and strong low pressure systems send him spiraling. When a strong low-pressure system comes barreling up the coast and the meteorologists start shouting "Nor'easter!", my boy begins wilding - extreme emotional responses to relatively minor setbacks and disappointments, constant sound and motion, rapid fluctuations in mood and manner.
But this week, I've been reminded that sometimes those fast-advancing systems can be a gift, because, inevitably, it's the advance that is the problem. Once the storm is upon us, Bud is able to settle down - so with a fast-moving system, the dysregulation is short-lived. This week, however, the meteorologists have been marveling at the "incredibly slow-moving low-pressure system, stalled just to the southwest of us," which has my son stuck in a constant repetitive loop - rewinding the same segment of a favorite tv show again and again and again, walking miles - literally miles - in circles around the house, listening to single clips of sound on his iPad over - and over - and over, riding waves of emotional volatility, and never being quite himself - living for days on end just one step off - as though there is crick in his system that needs to pop, but won't.
There's no doubt that it's the low-pressure system causing the problem. I hear the same issues echoed this week from other parents of kids on the spectrum. I've gotten verification from autistic adults that low pressure systems can be intolerable for them. It's real. It's got to be even more challenging and confusing for Bud than it is for me. And it's beyond his control; I know that.
And yet, knowing that doesn't mean I can do anything about it, except, perhaps, challenge myself to be a bit more patient - more tolerant of the rewind - more understanding that my son needs to stay in a predictable and repetitive behavioral loop in order to stay centered, in order to impose some kind of control on the internal chaos he feels. All I can do is try to minimize the external pressures as we ride out the storm.
So, no, we won't be attending. No, we won't be on time. No, not right now.
Monday, April 11, 2011
Saturday, April 02, 2011
But so what?
Does it really matter?
In a world full of wristbands and ribbons and tinted avatars and status updates that that try to inspire through belittlement – “Most people won’t have the courage to post this as their status for even one hour...” – is the Light It Up Blue campaign just the next phase in our slacktivist culture? Is it simply another version of posting a bra color for breast cancer awareness or a favorite cartoon character to combat child abuse?
I’ve thought about it a lot. And I’ll tell you the truth: I’m not sure.
But I don’t think so.
I had a great conversation about it with my friend Wonderfriend today. Wonderfriend does not have a child on the spectrum, but as a Speech Language Pathologist, she is a fierce advocate for the cause and she works tirelessly with her clients with autism. She’s also smart and media-savvy, and as such, she eyed the flurry of blue light bulbs through a lens of healthy skepticism.
We held our conversation in a somewhat public forum – via our Twitter streams – and we got good feedback from mutual friends who had seen it. Too often, I think, we folks in the autism community approach controversial issues from one of two postures: offensive or defensive. And all too often, regardless of the outcome of the conversation, we feel exhausted by the battle itself - defeated, sometimes, even in our moral victories.
But I don’t think it has to be that way. I was so glad to have an opportunity to talk through my perspective with Wonderfriend – a woman I know to be smart and thoughtful and committed to the cause. I appreciated the gentle challenge and the opportunity to try to give shape to my thoughts – and, to some extent – to clarify for myself what it is that I think.
With Wonderfriend’s permission, I am posting our exchange here. It is, of course, written in 140-character chunks and, therefore, like most Twitter exchanges, it reads more like haiku than like conversation. And since we weren’t always logged in at the same times, the flow isn’t always there. But the open exchange of ideas is there. The respect is there. The thoughtfulness is there.
And really, isn’t that what any awareness day should be about?
Here it is:
wonderfriend Friends, help me understand...are the blue lightbulbs for autism different than stating your bra color for breast cancer? Trying to get it.
16 hours ago
wonderfriend I keep thinking of @whymommy's essays (here & here) about social media awareness events. I feel uncomfortable.
16 hours ago
wonderfriend Everyone's heard of autism now, where do we go next with awareness/education? Resources, orgs that are doing good research?
16 hours ago
momnos @wonderfriend I think it's different from bra meme, which was FB only. This is FB promotion of real-life campaign.
13 hours ago
momnos @wonderfriend More akin to pink ribbons for breast cancer.
13 hours ago
momnos @wonderfriend I don't think the awareness is really there yet. In some circles it is, of course. But not as widely as it needs to be...
13 hours ago
momnos @wonderfriend ...in terms of it translating into choices at the ballot box. House of Reps here just voted for MAJOR cut in services. Devastating cuts.
13 hours ago
momnos @wonderfriend I think the outcry would be greater if people truly understood the impact. It starts w/ knowing just how many kids are affected.
13 hours ago
momnos @wonderfriend On a more personal level, it felt pretty great when one of my staff members texted me to ask where she could find a blue bulb.
13 hours ago
momnos @wonderfriend It gave her a tangible way to say "I'm with you."
13 hours ago
wonderfriend @momnos Yes, this makes sense. Good examples of the difference. I feel more comfortable about it. Thank you!!
12 hours ago
wonderfriend @momnos Were you at protest rally yesterday? My friend was there with a UU contingent.
12 hours ago
wonderfriend @momnos I fear these cuts are coming in every state, from what I'm hearing. Social services, education, disability services. Devastating.
12 hours ago
wonderfriend @momnos I just think it's so serious that I'm probably overly concerned/sensitive about where our energies are placed right now.
12 hours ago
momnos @wonderfriend I wasn't at the rally because it was during the work day. SO grateful to those who were. One of the most unsettling aspects...
5 hours ago
momnos @wonderfriend ...was the pride House GOP seemed to take in passing their cuts in the face of protests. Almost frightening.
4 hours ago
momnos @wonderfriend I hear you re: energies. I think of it this way: the best candidate in the world can't accomplish anything unless s/he gets...
4 hours ago
momnos @wonderfriend ...elected. So while big money for campaigning seems ill-spent (i.e., why not redirect it to people who really need...
4 hours ago
momnos @wonderfriend ...it), it's actually an investment toward a much bigger goal that will ultimately be more far-reaching in its effect on...
4 hours ago
momnos @wonderfriend ...people's lives. I think the blue light campaign is similar. Blue Empire State building = Springsteen at an Obama rally.
4 hours ago
momnos @wonderfriend I did write to my House reps before the vote, & was delighted to see they both voted against the cuts. Will follow w/a thanks.
4 hours ago
wonderfriend @momnos This is the kind of connection that makes sense to me. I wish that in the [few] references I've seen to the blue lights...
4 hours ago
wonderfriend @momnos ...there was more of a connection made as to its political or bigger-picture goal. I looked at it and was not sure what ppl want.
4 hours ago
wonderfriend @momnos I don't love Autism Speaks, so raising more $ for them isn't enough for me personally.
4 hours ago
wonderfriend @momnos thanks for having this conversation with me, I didn't intend to challenge anyone's intentions but I think it's so important
4 hours ago
wonderfriend @momnos ...to look carefully at some of the "post this for one day", "share your bra color!", "turn your twitter avatar green", etc...
4 hours ago
wonderfriend @momnos ...kind of "soft activism" that I am extremely wary of. I'm not a pink ribbon gal, either. I get this better now, appreciate it!
4 hours ago
momnos @wonderfriend Absolutely. Pseudo-activism can lead to complacency. Feeling like you're doing something is not the same as doing something.
4 hours ago
wonderfriend @momnos That's it. And when I see a large group of ppl putting a lot of energy into sthg that is temporary in nature I get nervous.
4 hours ago
momnos @wonderfriend I don't love Autism Speaks either, but the reality is, they have the spotlight. I can either lobby the House reps I have or...
4 hours ago
momnos @wonderfriend ...I can sit home and hope for a better outcome in the next election. So far, lobbying has been more effective.
4 hours ago
momnos @wonderfriend Same with Autism Speaks. I try to partner, but shift the conversation (had a blog post yesterday aiming to do just that).
4 hours ago
wonderfriend @momnos Lobbying House reps is hugely important. If this blue campaign gives ppl a platform to do that & increases that then I get it.
4 hours ago
wonderfriend @momnos These are the types of things that reach more ppl and are very effective, I believe.
4 hours ago
momnos @wonderfriend I think the FB platform can be really helpful. I have FB friends who are not in my everyday life - people from grammar school...
4 hours ago
momnos @wonderfriend ...etc. They don't know my son and they may think they don't know anyone w/autism, so 1 in 110 may not mean much. This helps...
4 hours ago
momnos @wonderfriend ...start the conversation. People tend to be more open-minded w/real-life contact.
4 hours ago
wonderfriend @momnos Right. But Devil's Advocate: does posting abt this campaign help more/differently than you posting your amazing blog posts on FB?
3 hours ago
momnos @wonderfriend I think so. Tho I'd like to believe everyone rushes off to read all my posts, I don't think they do. But if 30 of their FB...
3 hours ago
momnos @wonderfriend ...friends have a blue light avatar, maybe they will today. Hundredth monkey and all that.
3 hours ago
momnos @wonderfriend I only have a lot to say abt this bc I come from a similar perspective & have been having this internal dialogue for a while.
3 hours ago
wonderfriend @momnos I can't tell you how helpful the conversation is for me!
3 hours ago
wonderfriend @momnos I'm only seeing references to it thru you guys, my online friends. Not at all in my client community, and I've missed any...
3 hours ago
wonderfriend @momnos ...references to it in local media. I see no blue. I think such a small proportion of parents are taking an activism role.
3 hours ago
wonderfriend @momnos But perhaps if it's done year after year more ppl will catch on and take the time to do it.
3 hours ago
wonderfriend @momnos I'm sure communities with strong leadership are more active. Here, it's *crickets* abt it so I prob don't have good sense of...
3 hours ago
wonderfriend @momnos ...how big it is.
3 hours ago
momnos @wonderfriend I think it will. I resisted it last yr, but then my colleagues came to work wearing blue on 4/2. Moved me so much, and made...
3 hours ago
momnos @wonderfriend ...me understand the power behind the symbolism.
3 hours ago
wonderfriend @momnos That's beautiful! I didn't know it existed last year. Ok, gotta walk this dog & get this party started!! Thx again! xoxo
3 hours ago
momnos @wonderfriend Enjoy your day! (Wear blue!) ;)
3 hours ago
wonderfriend @momnos Ha! My internal rebel is not ready for that! But I'll work my ass off for autism every damn day!!!! :-)
3 hours ago
momnos @wonderfriend Yeah, that'll do. :)
3 hours ago
My thanks to my good friend Wonderfriend - for her tireless efforts and advocacy for our kids, for a great conversation, and for her gracious permission to re-post it here.
My thanks, also, to my district's members of the state House of Representatives – one a Democrat and the other a Republican – who both voted against the devastating budget cuts that won wide approval in the House this week. I’d written to both of them about a month ago, urging them to vote against the cuts, which would significantly diminish support to children and adults with developmental disabilities. I read today that my Representative was one of only twenty Republicans in the state who voted against the cuts. He was quoted in the newspaper saying that his first priority was to the people in his district, his second to the people in the state, and his third to his party.
I wrote both of my Representatives again today – World Autism Awareness Day - to thank them for their votes. I also thanked my Republican Representative for his courage, acknowledging that in the current climate, it is a risky act to vote against one’s party. He replied personally within a half hour, saying he shared my disappointment, giving me hope that the tide might turn in the Senate, and encouraging me to keep the faith.
And I am keeping the faith – but I’m also Googling the e-mail address of my state Senator, so that I can make sure that he knows where I stand.
Because, yes, I believe that awareness is important today – World Autism Awareness Day.
But I think it might be even more important tomorrow.
Friday, April 01, 2011
When autism speaks in my life most powerfully, when autism speaks directly to my heart, autism speaks to me through Brooke, and Miss M, and GP, and Andrew, and Nik, and Ben, and Oliver, and Charlie, and John, and Sam, and Charlotte, and Isaac, and Rooster, and Foster, and Dev, and Rocco, and Fluffy, and Evan, and Boo, and TH, and Kyan, and Buddy Boy, and India, and N., and Leo, and Nat, and Megan, and RM, and Caleb, and Rhema, and Jesse, and Elizabeth, and Ray, and Jaysen, and Sweet M, and Christopher, and Connor, and Keegan, and Katie, and Kate, and Ian, and Brian, and Brandon, and Adam, and three Jacks, and two Henrys, and so, so many others, who have touched my life in indelible ways.
When autism speaks in my life, it speaks to me through Bud.
That’s why I love this video from Rethinking Autism.
It’s also why I’m lighting it up blue tomorrow for World Autism Awareness Day.
To me, their goals are not mutually exclusive.
And to quote my friend Jess (again), "Awareness is not the goal, but the means by which we will achieve it."
Happy Autism Awareness Month, friends. Thank you for bringing your children into my life. Thank you for helping them speak to me.
Tuesday, March 22, 2011
This week, a slightly more polished version, printed on higher quality stock, is making its way to the West Wing, where it may land in the hands of - and then, certainly, in the heart of - the Commander in Chief. The hard copy includes a postscript encouraging the President to follow the link to the online version, to view the hundreds of comments left from "every corner of the autism community - truly united in its request for your support."
If you haven't left a comment on Jess's open letter, I urge you to do it now: right here. And then, I encourage you to get a blue light bulb for your own home for World Autism Awareness Day.
As Jess has said - loudly and clearly and to anyone who will listen - "Awareness is not the goal, but the means by which we will achieve it."
Let's light the world up blue.
Friday, March 11, 2011
Friday, February 18, 2011
N.B.: I typically wait a few weeks to re-post my Hopeful Parents entries on my own blog, but this one seems to have resonated with parents to a degree I hadn't anticipated. Between the comments and e-mails I've received and the notification on Facebook that says 254 people have shared the link, I'm thinking that this is a subject that has not gotten enough attention and that it's a message that many parents need to hear. Since the shelf-life of posts on Hopeful Parents is relatively brief (because there are two new posts every day), I think it might continue to reach more people here, where posts tend to linger on the home page a lot longer.
This post originally appeared on Hopeful Parents on February 11, 2011.
In her book Making Peace With Autism, Susan Senator writes of the periods when her family must manage her son’s most difficult behavior, “we live as if under siege.”
In her blog, Jess from A Diary of a Mom talks about her feelings in the early days following her daughter’s diagnosis as “that awful, combustible mixture of heart-wrenching pain and abject fear.”
In the archives of my Twitter feed is a tweet I wrote during a particularly difficult school vacation, when Bud’s behavior made me afraid to leave the house with him: “I feel like a hostage.”
As anyone who reads us knows, Susan, Jess, and I love our autistic children. We truly, madly, deeply love them. We celebrate them. We advocate for them. And yet, each of us has experienced intense feelings of hopelessness, helplessness, and fear.
I heard the same dichotomous feelings echoed by other women a few weekends ago, when I attended a social function with a phenomenal group of autism moms. As I’d expected, over the course of our evening together, there was plenty of IEP talk, plenty of been-there-done-that edification, and plenty of laughing so hard it hurt. But there were also more tears than I’d expected. There was more vulnerability than I’d predicted - more fragility, more shared feelings of aloneness, more compared notes on the emotional and physical tolls that this autism parenting journey was taking on the women around the room.
It was in the middle of one of our more heart-rending conversations that one of the moms, whose husband has been serving active duty in the military, said, “You know what this is, right? This is PTSD. Post-Traumatic Stress Disorder. It really is.”
The group fell silent.
Then people started sharing. The physical reaction to loud noises. The sleepless nights. The ceaseless anxiety. The sensory overload. The fear.
Not their children: Them.
The diagnosis resonated – not for everyone, but for some. I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time. I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?
It was a powerful moment.
I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children. So, I went home and started Googling. I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder. The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:
Symptoms of PTSD fall into three main categories:
1. Repeated "reliving" of the event, which disturbs day-to-day activity
■Flashback episodes, where the event seems to be happening again and again
■Recurrent distressing memories of the event
■Repeated dreams of the event
■Physical reactions to situations that remind you of the traumatic event
■Emotional "numbing," or feeling as though you don’t care about anything
■Feelings of detachment
■Inability to remember important aspects of the trauma
■Lack of interest in normal activities
■Less expression of moods
■Staying away from places, people, or objects that remind you of the event
■Sense of having no future
■Exaggerated response to things that startle you
■Excess awareness (hypervigilance)
■Irritability or outbursts of anger
You also might feel a sense of guilt about the event (including "survivor guilt"), and the following symptoms, which are typical of anxiety, stress, and tension:
■Agitation, or excitability
■Feeling your heart beat in your chest (palpitations)
It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends. Symptoms resolved within a month – those I haven’t addressed here - are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).
The source of my friends’ symptoms - the identified “trauma” - varied from woman to woman. For some, it was the impact and subsequent upheaval of the diagnosis itself. For others, it was an event - or series of events - involving their children’s aggressive behavior or uncontrollable tantrums or self-injurious behavior or indescribable fear. For others, it was the toll exacted by constant vigilance - living life, day after day, in a metaphorical foxhole, watching and waiting for the next attack, but never being sure when it would come, how long it would last, and what kind of devastation it would leave behind.
For some women in the group - more, actually, than I would have imagined - autism emerged in their lives in the wake of another trauma, the physical and emotional impact of which had not been fully resolved. Already struggling, already vulnerable, already fragile, they found their symptoms – the reliving, the avoidance, the arousal – not just heightened, but compounded by parenting a child with autism - more insidious, more difficult to pinpoint, and, somehow, more easily assumed by them to be the result of their own personal failing.
I hope that as you read this post, you don’t see yourself in its words. But if you do – IF YOU DO – listen to me: you are not experiencing these things because you are weak or because you're a bad parent or because you’re just not trying hard enough. You are experiencing these things because you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time.
And it can get better. Here’s what you can do:
Read about treatment options. Here. And here. And here.
Make an appointment with your physician or with a therapist. Print the list from the National Institutes of Health, highlight the symptoms you have, and bring the list with you to the appointment. Read this post from Jess at A Diary of a Mom if you start to lose your nerve. Better yet, print it out and bring that with you, too.
Find a support group. Don’t find a group of angry parents who get together and spin their wheels while they rage against the oppressive system. Though they may call themselves “support groups,” in my experience, those groups are toxic. Find a group of people who want to talk through the hard stuff, but who are forward-thinking problem-solvers. If you can’t find one in your local community, take the advice of Boy Wonder’s Mom and find one online. Look for people who are saying things that resonate with you, then join the conversation. Don’t be afraid to jump in – bloggers are blogging because they want to connect. People are joining online communities and listservs because they are looking for others who understand. Find them.
If you feel under siege, if you feel heart-wrenching pain and abject fear, if you feel like a hostage, then know these two things:
You are not alone, and
It will get better.
Friday, February 11, 2011
Tuesday, January 11, 2011
There's a lot going on in these parts - many half-written posts in my head that I hope to - plan to - finish up and get posted in the weeks to come. My absence in the blogosphere is not masking difficulty behind the scenes, though. Our holiday were lovely and we've plowed into the new year with force.
Last year, I resolved to post every day in January - and I did it, more easily than I'd expected. This year, I'm making a resolution with considerably more heft. It's the basis of my post this month at Hopeful Parents - you can read about it here.
While you're over at Hopeful Parents, you may want to read my December post as well. With everything that was going on in my life off-blog at the time, I didn't have a chance to tell you it was there. It was written for the holidays, but it's applicable now as well. It might even give you an idea for a quick, easily met resolution to kick off the new year.
Here's to a good 2011 for all of us. I look forward to sharing it with you.