Saturday, December 25, 2010
We are both, I think, always braced and ready to respond to an emergency involving either of "the boys." But, until very recently, I hadn't really considered what would happened if my mom got benched.
A couple of weeks ago, my mom had a health scare. For a short time, it was a big scare; it is less so now, and she is, thankfully, feeling good, doing well, and back in the game full-time. But for a couple of days, things felt much less certain.
In the first hours of my mom's health scare, after the scariest moments had passed, I watched the clock and tried to make a plan. My dad was at lunch with friends. Bud was at school. Neither knew that my mom was in the hospital. Each would be panicked by this sudden change in routine, by the lack of clarity surrounding the situation, and by the idea that my mom might not be well.
It occurred to me as I sat in the emergency room: It doesn't just take a village to raise a child. It takes a village to live a life. And I needed my village.
I took to the phone and made some tentative phone calls. I wasn't sure what I needed, but I wanted people to know that I might be calling again. I sought out people uniquely qualified to help with my most immediate needs - Mrs. H and Ms. Walker, Bud's former teachers - women who had seen Bud at his most challenging and his most charming, who would not panic at a dysregulated response from my boy (and - because the universe just seems to work this way - women who each have a parent with Alzheimer's).
Mrs. H sprang into action that night - arriving at my home just after I'd explained the situation to Bud and my dad, and staying late into the night while I returned to the hospital, where my mom had been admitted. Ms. Walker offered to be on call for the following day, to pick up Bud from school and to step in as needed, in whatever way might help.
I called my dad's friends - people I hardly know - and explained what was going on. Within twenty minutes, they'd rearranged their day, agreeing to pick up my dad the next morning and stay with him for as long as he needed their company - until I called with word on my mom.
The next day, with Bud and my dad in safe hands, I stopped at my office on my way back to the hospital, and my colleagues met me in the hallway.
"Do you need anything?"
"Yes, I do. I'm not sure what. I'll call you. Thank you."
"Can I come over and sit with your dad?"
"Yes, you can. I'm not sure when. I'll call you. Thank you."
"Can I do anything? Take your trash to the dump? Run to the pharmacy?"
Yes, you can. I'm not sure which. I'll call you. Thank you.
"Can I make you a meal?"
Yes, you can. I don't know what. But could you make it gluten-free, please, for my dad? Thank you.
Yes, thank you. Yes, thank you. Yes, thank you.
I didn't know if I needed a plan for hours, or days, or weeks. I started planning the weekend - the one which was clearly marked "Put Up Christmas Tree" on our calendar at home (something that seemed, at the time, like such a great way to keep Bud from obsessing about a Christmas tree, but which, I see now, was not my wisest move). I thought of which friends I could call to go and pick out a tree and set it up in my living room, so that no matter what else happened, Bud would be able to decorate on Saturday.
I thought about people whose presence would be most reassuring and comforting to my dad and to Bud.
I thought about who might be able to come and stay overnight for a couple of days.
I thought about things that people could do from long-distance: Research. Phone trees. Christmas shopping on Amazon.
Luckily, I never had to enact the plans. My mom was released the next day and has returned to good health. In retrospect, it all feels like an elaborate test of the emergency broadcast system (This is a test. This is only a test. If this had been an actual emergency...) What I discovered over that 36 hour period, though, is that there's one thing that the challenges in my life have taught me well - one lesson I have learned all the way to my toes: I know how to ask for help and I am quick to accept offers of help from others.
That wasn't always true for me. Like many people who find themselves in helping professions, I saw myself for a long time as a helper, and not as one who needed help. "Thank you," I'd say when people extended a hand. "Really, I appreciate it. But I'll be fine."
There came a time, though, when I knew I wasn't fine and I had to lean on the people around me - people who were eager to prop me up - people I would desperately want to prop up if the situation were reversed. So I leaned while they propped, and I survived. And through that experience, though I still look for opportunities to prop up others, I've learned to be comfortable with leaning, too.
Our recent experience was an important reminder for me. We are part of an extraordinary village of people who live both near and far. Some days we carry the water to the village for them, and some days we call for them to carry it. We need that relationship to survive. We have to remember to offer help, but we also have to remember to ask for it and to accept it.
My closest villagers - my team of four - just celebrated a Christmas full of As. Autism and Alzheimer's figured prominently, of course, with each made more pronounced by the break in routine that the holidays bring. But this year, they were joined by a whole lot of other As:
This holiday feels especially precious - as fragile as it is beautiful. It's hard to keep from wondering where we'll be at this time next year. But, wherever we are, I hope you'll be there, villagers. I'll be calling when I need you, and I hope you'll call when you need me, too. And when I offer to help, please - just start with "yes." You can fill in the blanks for me later.
Merry Christmas, friends. Thanks for being part of my village.
Thursday, November 25, 2010
Tuesday, November 23, 2010
Here's why: our current tradition, as it has played out in recent years, typically involves Bud dissolving in a muddle of tears and dysregulation by bedtime. I understand it. I really do. Thanksgiving is a high-build-up, low-pay-off holiday for Bud. It gets bundled as part of "The Holidays" in our national culture, aligning it closely with Christmas, as though it's the first installment of a spectacular series of events, and not just a precursor of spectacular things to come. There's build-up in school, with the promise a long stretch of time off. But, then, when the "big day" comes - well, for Bud, it's usually a whole lot of nothing. No egg hunt and basket. No trick-or-treating. No pile of presents in front of a sparkling tree. Just adults who are distracted making foods he doesn't want to eat, a TV showing parades and sporting events he doesn't want to watch, and, ultimately, a heaping helping of disappointment and let-down.
And, then: Cue the tears.
With memories of Thanksgivings past weighing heavily on my mind, I've spent the past couple of weeks trying to come up with a new Plan A - something to build Bud's day around. There were some built-in challenges to my brainstorming. First, I am still forced to hyper-vigilant about Bud's food intake, which meant that the new "extra special something" could not involve the preparation and consumption of high-calorie treats. Second (and not surprising for anyone familiar with autism), the introduction of new people - either by visiting them or by inviting them to our house - would probably not help, since it might add to the dysregulation instead of diminish it. Third, Bud is not a crafty kid - so the whole "make a Thanksgiving centerpiece out of macaroni, tissue paper and yarn" thing was out. Fourth, I am battling daily to keep the Christmas-frenzy from overtaking him full-tilt (a battle I am not sure I'm winning, incidentally), so I wanted to avoid anything that might even HINT at Christmas-preparation. And fifth, I really wanted to avoid turning Thanksgiving into yet another present-getting occasion, as our festivals of consumption are plentiful enough.
So, working around all of those potential landmines, here's we're we've landed: Bud and I will be having an indoor camp-out. On Thursday, in between the potato mashing and the table-clearing, we'll be turning the playroom into the great outdoors: setting up the tent, rolling out the sleeping bags, and firing up the battery-powered lanterns. We'll have stacks of books, lots of pillows, and, I imagine, a gathering of stuffed friends around us. We'll pop some popcorn and eat marshmallows that we've pretended to roast on an open fire that I imagine we'll make out of paper.
The plan is still forming, of course, so I'm open to suggestions of additional ways to make the day special - camping-related or not. So, please - send your ideas this way. They may become part of our Thanksgiving tradition for many years to come.
Monday, November 22, 2010
It occurred to me a few days ago that the eleventh was rapidly approaching and with it, my posting date for Hopeful Parents. Could it really be the eleventh again?, I thought. So soon?
But, of course, it was. Is. The 11th. 11-11, actually. Elevenses.
I Googled "elevenses," because I knew I'd heard the word somewhere before, and I landed on this Wikipedia entry (and for any of my writing students who happen to be reading: No, Wikipedia is STILL not a credible source), which informs me that in the UK and Ireland, "elevenses" is a light snack - a warm beverage and a tasty cake - eaten in late morning. It's a little treat - something you do for yourself, just to get yourself through the day.
I imagine that if you're the parent of a child with special needs, you get the same question I get from well-meaning doctors and therapists: "What are you doing for yourself?" It's an important question, but by the tone and frequency with which it's asked, I get the sense that when these doctors and therapists ask it of most special needs parents, they are met with blank stares and lengthy silences.
Not so with me, though. I merely thank them for their concern and assure them that I am, indeed, taking time for myself. I am enjoying my elevenses.
And I am. Sometimes they take the form of things that I do - enjoying a night out with friends, reading a novel that's just for fun, shopping for a new pair of chunky-heeled boots. And other times, they take the form of things that I don't do, because I just cant manage one more thing, even if, under different circumstances, that thing is something I might like to do - seeing my students perform in the college play, volunteering for the school Book Fair, responding promptly to an e-mail from an old friend.
Or writing a blog post simply because it's time.
The key here - the elevenses part - is not simply in the not doing. It's in not feeling bad about not doing. That part is more difficult, but it's critical. In order to make it happen, I have to assume that everyone else will be willing to cut me a break - and, as it turns out, when I test my assumptions, I find out that in most cases, the break has been cut. That knowledge - or, perhaps, that ongoing assumption - makes it easier for me to cut myself a break as well.
They are not huge, my elevenses. Taken alone, they will not shake the ground enough to register on even the most sensitive seismograph. They are not cruises to the Caribbean. They're not even days spent at the spa. They are little moments of doing and little moments of not doing. But taken together, they get me through.
And, of course, all this is my explanation for why I am not writing a Hopeful Parents blog post today, 11-11, the high holy day of elevenses.
And yet, it seems that in my explaining, I have written a blog post.
But I'm not going to beat myself up over it. I'm just going to look at this as one of those "do" elevenses, and not one of the "don't do" ones.
Whatever the case, I'm going to go celebrate with a warm beverage and a tasty cake.
Perhaps you'd like to do the same.
Thursday, November 11, 2010
For me, all the elevens are a reminder that it's time for my monthly post at Hopeful Parents. You can click here to read it or check back in a week or two, when I'll post it here - whichever you wish.
Friday, October 22, 2010
This post originally appeared at Hopeful Parents on October 11, 2010.
It may come as a relief to anyone who has ever driven with me to learn that this summer, at long last, I purchased a GPS.
If you have never driven with me, then I need to tell you up front that I am not writing with false modesty here. I will acknowledge that I have many talents, many gifts - however, a keen sense of direction is not among them.
My problem is worse than just having a poor sense of direction, though.
You see, I love road trips. I love driving to places I've never been just to see what's there. And I especially love being in the passenger seat, being in charge of changing the radio station and engaging the driver in conversation to pass the time. But I give the same warning to every driver I accompany on a road trip:
"Here's the thing," I say. "The thing is, I have no sense of direction. None. Zero. But if you ask me which way to go, I will give you an answer. I won't couch my response. I won't say, 'I think it might be this way,' or 'That way kind of looks familiar," and I will absolutely, certainly not say 'I don't know.' I will boldly and confidently respond 'Take a right' or 'Take a left' and I will sound so absolutely sure of myself that even though I've told you all this, you will take that right or left. And about 85% of the time, I will be wrong."
I say this. Truly, I do. I say it that clearly and that directly. And nearly every time, not long into the trip, the driver will pause at an intersection and say, "Do I turn here?" and I will say, boldly and confidently, "No, keep going straight." And then we will go anywhere from 50 yards to 50 miles out of our way before the driver decides to turn around and try again.
This is fact.
So, really, believe me when I tell you that it's in everyone's best interest that I've purchased a GPS.
Bud and I broke it in early this summer and we've both become big fans. Thanks to an episode of Curious George, Bud calls it our "auto navigator" and he wants it on at all times. At first, he seemed to think that it was kind of like the Wii. As we drove past the lake and the road edged the water, Bud coached from the back seat in the same tone he uses when he watches me try to walk the Wii tightrope: "You're doing great, Mom! Don't let the car fall in the water!" But now he seems to get the point of it and enjoys having the auto navigator tell us which way to go.
Of course, we don't always listen to the auto navigator. Sometimes it tells us to go one way, when we'd just prefer to go another. And magically, beautifully, instead of fighting us on it, the auto navigator simply just takes a virtual look around, recalibrates, and says, "Okay, well, now that we're here, how about if we try going this way?"
We used the GPS for the first time on a Friday in July, as Bud wrapped up his first week in his Extended School Year summer program. As we drove, following the encouraging electronic voice of our new auto-navigating friend as she pointed us in all the right directions, I thought about how nice it would be to have a GPS for parenting. I imagined myself punching in the destination "outburst managed effectively" and waiting mere seconds for the instrument to calculate my route to success. How nice it would be to move forward with the assurance that if I made a parenting misstep, a gentle voice would instantly redirect me: "When possible, make a legal U-turn."
I reminded myself that I was not alone in that desire - that most parents would love to have this kind of instrument - though perhaps parents of children with special needs would use them more often than most. I thought about how, in the absence of a parenting GPS, we special-needs parents try to find other kinds of road maps. We try to take direction from experienced guides - those who have travelled the roads before us with success and finesse.
And then I started to panic.
Am I doing the same thing on my blog that I do when I'm the passenger in a car?
Am I telling my parenting story with unwarranted confidence, leading unsuspecting parents down paths that are 50 yards or 50 miles out of their way?
Should I add a flashing neon disclaimer that scrolls across the top of my blog: "WARNING: I don't actually have any idea where I'm going here" or, simply, "Construction Vehicle - Do Not Follow"?
I was somewhat reassured when I reminded myself that when I'm feeling least confident, I tend to go on fewer road trips. In other words, when things with Bud are particularly tough and I really don't feel like I know what I'm doing, I don't usually write many blog posts.
And such was the case on that Friday as I drove towards home, the GPS seamlessly laying out the route I already knew so well. I considered how little I'd been posting to my blog, how little about our life I felt I could share, and how much I longed for a Magic GPS of Autism Parenting. I thought about how hard it was to know what to do in the face of escalating anxiety and aggression. I thought about how nervous I was that summer was upon us - summer, once my favorite season, now fraught with landmines disguised as long, unstructured, routine-free days.
My heart raced as fast as my brain as I thought about the weeks that had led up to the start of Bud's summer program - weeks full of e-mails and conversations that challenged me to take a stronger stand than I ever had before, that made me leave the safe haven of collaboration and step with false confidence into a land of contentiousness, as I tried to ward off a rerun of the previous summer and found myself for the very first time using phrases like "free appropriate public education," "entitled by law," and "due process hearing."
As we neared our house, my racing thoughts were interrupted by the calm, even voice of my new GPS auto-navigator, who gently reminded me that the left I was about to take was, indeed, my best alternative. The interruption changed my focus and made me consider how the parenting turns I'd made in recent weeks seemed to be playing out.
We had a good summer plan in place. It wasn't ideal - it wasn't identical to my original request - but it was a good, solid plan. It was, in fact, the best Extended School Year plan that Bud had ever had.
And Bud had just successfully wrapped up his first week of the Extended School Year. He'd made the transition beautifully. He'd started each school day happily - no arguing, no groaning, no long, tearful goodbyes at the door. He'd had great reports each day when his session had ended. And now, after a full week and a newly-established routine, he sat in the back seat as we headed home, humming along with the radio and talking back to the auto-navigator, happy and content.
Just then, we pulled into our driveway, and the calm, even voice of our auto-navigator said one last thing:
"You have arrived."
Startled, I looked at the screen. And there was the message, bright and glowing:
"You have arrived."
I almost burst into tears.
I had no idea how much I'd needed the validation - how much I needed to hear from a voice outside my own head that the risks I'd taken were paying off, that my judgment had not led my son 50 miles in the wrong direction, that despite my panic, we were moving toward our goal.
Certainly, this was one small stop on a very long journey. Clearly, it was not the hardest leg of the trip and we'd not taken the most complicated route. But in that moment, on that day, sitting in that driveway, the words of my new-found electronic friend meant everything to me.
We had arrived.
The summer program played out well for Bud. I don't think I've burned bridges with the school district. And now, as we look ahead to the next phase of our journey, we seem to be facing new landscapes with what looks to be rocky terrain.
I still wish I had a parenting GPS.
But I'll tell you this for sure: for the foreseeable future, I'll be using the GPS I do have to chart a lot of journeys home.
Thursday, October 21, 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.
Wednesday, October 20, 2010
This post originally appeared at Hopeful Parents on August 11, 2010.
I've been thinking lately about the very first, honest-to-goodness, back-and-forth conversation that I ever had with Bud. I can recount it to you verbatim, because it was such a big moment that I immediately captured it in writing:
Me: Let's go get your coat.
Me: Yes, we're going outside.
Bud (getting a ball): Ball.
Me: No, we can't play ball outside today. It's too cold.
Me: Yes, it's slippery, too. We're going bye-bye in the car.
Bud: No boots.
Me: No, you don't need boots in the car.
Bud was just over two-and-a-half, and he wasn't speaking much. There were occasional words and phrases - mostly echolalia, though I didn't really know it at the time. He was already in early intervention, but he had not yet been screened for autism - though the possibility of it may have begun to creep onto my radar.
But then: conversation! I was certain at the time that it was the start of what would become an explosion in language development - a sign that, within months, I would chuckle and wonder why I'd ever been worried. It was the thing that I pointed to - the thing I clung to - as I shaped a world view in which my child did not have a disability. Yes, I thought, his speech is delayed. But we have conversation!
And we did have conversation - one conversation - when he was two-and-a-half. The next one might have been a year later; it might have been much later than that. I'm not sure, because that one was not captured in his baby book.
I've been thinking about how that one conversation shaped my mindset in those early days. It may have held me back from really recognizing what was going on with my son's development - may have kept me longer in denial, may have made me less likely to seek additional support. But I think it played another role, too. I think it kept me focused on Bud's potential. It made me see him not as a child who couldn't converse, but simply as a child who didn't converse. There's a big difference there. With the former mindset, I think I would have viewed him as a child with limitations; with the latter, I saw him as a child facing obstacles. It helped me to focus on helping Bud master the obstacle course, rather than making it okay for him to sit out the race.
And as I think about that, I think about all of the attention paid in the popular press to the "early signs" of autism - the behaviors that indicate that your child might have the disability. It occurs to me that we might want to start giving equal attention to a different type of early sign - the behaviors that indicate that your child with autism might have tremendous potential - tremendous ability. Even if you only see those behaviors briefly. Even if you only see them once.
Bud and I have frequent conversation these days. They're different from the conversations that I imagine most parents have with their ten-year-olds. But now, as when he was two-and-a-half, our conversations are full of moments - brief illuminations - indications that he is capable of so much more and that he is constantly reaching for his capacity.
We should talk about them more.
Tuesday, October 19, 2010
Lots of things are going well. I love Hopeful Parents and I love being a part of such a wonderful community of parents and writers. I like helping to direct new readers there. I like having a deadline that forces me to write something at least once a month. I've been introduced to some great new parents and I've broadened my perspective on raising a child with special needs.
Some things are not going as well, though. The main issue is this: If you're a writer, you may understand what I mean when I say that sometimes writing feels like parenting. You start with raw material - a blank page - and you breathe life into it. You shape it, assess it, redirect it, and then marvel as it begins to take on a life of its own. Your essays - your stories - your blog posts - begin to feel like your children.
Well, these days, with my Hopeful Parents posting, I feel like I've randomly selected a few of my children and shipped them off to go live with another family. Don't get me wrong - it's a nice family; it's a lovely family. But I miss having my kids at home.
I've also discovered a fascinating trend in readership - or, in readership as evidenced by comments, at any rate. There's a significant subset of people who often comment here, but don't comment there. They contact me by e-mail instead or they make a comment related to my Hopeful Parents post on an unrelated post here. Some, I think, just don't comment at all. I've been wondering why this is and I've developed two theories:
First, there's a lot of coming and going over at Hopeful Parents. A new kid moves in every twelve hours or so. So, you might get introduced to my kid, leave for a while, and then return to continue the conversation, only to find that several new kids are sitting in his place. You could go searching for my kid, but really, time is short, and it's just easier to wait for another opportunity to chat.
That dynamic is less true over here, where life is lived at a much slower pace and my kids may linger at the table, helping themselves to one more piece of pie, for days or weeks before anyone else sits down with them. Here, there's a lot more space - physically and psychologically - for chatting.
My second theory is this: As I've said before, I think (and hope) that when people visit this blog, they feel like they're sitting down in a virtual living room with a steaming cup of coffee and a few good friends. I think the living room environment itself invites conversation. But I think, maybe, that commenting over at Hopeful Parents makes people feel like they're dropping in unannounced at my office. They never know if it's a good time and they're afraid they might be interrupting something - so they make their visits brief and they try to be unobtrusive.
So, that's the overview of my 90-day review. On balance, things are going well, but I've decided to take my cue from Jess at A Diary of a Mom and make one small change. I'll still ship my kids off once a month to the loving family at Hopeful Parents and I'll let them spend some time there on their own. I hope you'll visit them to see how they're doing. And then, after a little time has passed and I start missing them too much, I'll bring them home and reprint them here. They can keep a bag a Hopeful Parents and spend as much time there as they like. But I hope they'll always feel at home here.
I hope you will, too.
Friday, October 15, 2010
First, a bit of background. It's been a rough couple of days around here. A major storm blew into our area yesterday and the low pressure system that accompanied it wreaked havoc on Bud's system, the way that low pressure systems often do. Coincidentally, Bud had an appointment with the doctor who does his medication management yesterday, so the doctor got to see first-hand the extreme behavior that these kinds of systems can cause. We were able to talk through some strategies regarding the timing and dose of medications when these situations arise.
But, today, the storm continued to rage outside my house and inside my boy, and though I had a plan for medication (which was ultimately successful, I think), I knew early this morning that I would not be able to send him to school today. Instead, we had a sort of home-spun homeschool day, just the two of us, for better or worse (and, frankly, we experienced a little bit of both).
It's been exhausting - and I imagine it's been twice as hard on Bud as it's been on me. And it's been frightening. When I see extremes in behavior, there is always some small part of me that fears it's a shadow of things to come - that this is not merely a blip on the radar caused by barometric pressure, but is, in fact, an emerging issue.
It was right in the middle of the day today that I remembered an e-mail I'd received a couple of days ago. It was titled "Hope?" and it was from Sharon, the mom of a young man with Aspergers. She'd attached a video clip and said she was sending it to remind me to never give up because the fight is worth it. I couldn't open the video link on the computer I was using when I'd opened my mail, so I'd saved it in my inbox until I could watch it from home.
I clicked the link today, and I "met" Sharon and her son Scott. The video was made when he was 21, following a period of about seven years when he was so uncomfortable around people that he rarely left his home.
But on the day this video was made, Scott took a risk and left home. He did it, he says, because "a lot of people have a lot of pre-judgment against autistic people and I'm here to try to break it."
And break it, he did.
It was just what I needed to see today - a day when Bud and I weren't able to leave our house, a day that didn't seem full of hope.
But this filled me up.
Monday, October 11, 2010
So far, this month is no exception.
I do want to thank those of you who have e-mailed me privately. No, nothing is wrong, and no, I'm not abandoning this blog. It's just been hectic around here as both Bud and I adjust to the routine of a new academic year. In addition to my full-time job at the college, I'm also teaching two online writing classes to students who are studying in Europe. I'm working on an outside writing project. And on top of all that, I'm reading The Girl With the Dragon Tattoo - which, somehow, keeps finding itself on the top of my "to do" list despite the many other things that need to be done.
So, the Hopeful Parents deadline has been good for me. Today is the 11th - which means I have another post up. It's a post that has been languishing in draft form over here for months - one that I started writing early this summer, after I bought my first GPS.
If you read it, you'll see that I advise you never to take direction from me. But, really, you can trust me on this one: If you want to find it, just click here.
Friday, October 08, 2010
But lately I've been thinking about the other spectrums that seem to come along with autism. I was talking not long ago to Bud's former teacher, the incomparable Ms. Walker, who told me that she often thought about working with children with autism by looking at the number line that runs across the wall of her classroom. When she works with a child with, say, dyslexia, she can usually predict that on any given day, that child is going to walk into her room with a level of challenge that falls within a particular range on her imaginary number line - let's say, somewhere between 40 and 60. But, she said, with Bud, she knew that on any given day, he might enter at any point on the number-line of challenge. One day, he might walk in at negative 150. The next, he might be at positive 125. Each day stood as a discrete point on the number line, seemingly unconnected to either the day that came before or the day that would follow. Her strategies for intervention also had to run a spectrum, she learned, because a strategy that was powerfully effective one day, might be woefully inadequate the next.
I thought about another kind of "autism spectrum" a couple of weeks ago, as we celebrated Bud's eleventh birthday. All day, I walked around with a single line from the Sting song "All Four Seasons" running through my head: "That's my baby. She can be all four seasons in one day..."
It wasn't until after I put Bud to bed that night that I had time to reflect on the day and on why that particular song kept occurring to me. I thought about the ever-changing seasons of Bud's behavior over the course of the day - a day that he'd been anticipating for months. Those seasons ran a full spectrum, cycling rapidly from sunny and bright, to stormy and imposing, to placid and serene, and back to glorious and sparkling.
I thought, also, about the seasons of life - the spectrum of stages we all go through - and the way that most of progress through those seasons in a linear way, embracing the one ahead of us as we let the one behind us fall away. But Bud does not seem to be progressing through the developmental stages in life in quite the same linear way. His development, it seems, is more fragmented, with different aspects of it moving at different paces, making him seem at once so innocent and childlike, so angsty and preteen, and so grown-up and mature.
I thought about his multi-stage, full spectrum development as I looked at his birthday presents - each of them treasured in its own way. Among them, I saw:
A Teletubbies board book, designed for chubby toddler hands;
Teletubbies colorforms, for ages 3 and up;
A DVD and a set of stuffed characters from the PBS preschool show Dinosaur Train;
Chapter books from the PBS Kids show Martha Speaks, geared to children in the early elementary grades;
An amazon.com gift card - just right to meet the independent spirit of the 'tween demographic in which he finds himself age-wise (and which he used to by another Teletubbies board book and two Caillou VHS tapes, which he doesn't watch, but which he needed to complete his collection);
A boombox with an iPod dock, probably a big seller with teenagers, which he uses to play his country music - most definitely popular among college students;
A set of DVDs from the first season of the National Geographic series Be the Creature, featuring the Kratt brothers, formerly of the PBS Kids show Zoboomafoo, and now in a series oriented to teens and adults;
A banjo, perfect for plucking out some homespun bluegrass - which, though certainly appropriate for all ages, may be most popular with the grandpa set.
He loves them all.
That's my baby. He can be all four seasons in one day.
Saturday, September 11, 2010
It's totally unsettling.
It's unsettling, of course, because nine years ago today was a day just like this. I drove the same streets, walked the same paths, and soaked in the glory of the same sort of beautiful day with a heaviness that my heart had never known before. The parallels outside today make the painful memories of 9/11 even more acute.
And yet, despite the painful memories, there is no denying that today is a spectacular, glorious, gift-from-above day. It's a day that demands appreciation and gratitude.
I'm guest-posting today, as I do on the eleventh of every month, over at Hopeful Parents, and my post takes a deeper look at the kind of dynamic tension that the opposing forces of today's weather create for me. I hope you'll click here to read it.
In the meantime, Bud and I are off to revel in this glorious day.
Wednesday, September 01, 2010
Remember a few months ago when I wrote about Dierks Bentley's latest album, Up on the Ridge? And remember how I talked about the risk he was taking by producing a bluegrass-inspired album that stood in stark contrast to the mainstream market, which, in my estimation, "is a market that sometimes seems to reward conformity over innovation, and an industry that too often uses valuable prime-time network TV slots not to showcase the best of what country music has to offer, but to market a select number of carefully groomed country artists, promoting them as potential crossover artists to the lucrative pop-dominated airwaves."
You may not have realized it at the time, but my subtext there was "I'm talking to YOU, CMAs."
This morning, this year's CMA award nominations were announced. Dierks Bentley is nominated for three awards, including Male Vocalist of the Year and Album of the Year - for Up on the Ridge, that not-so-mainstream, outside-the-box, bluegrass-inspired album that I thought would be under-appreciated by the likes of the CMA.
I'm positively FEASTING on my words.
There's a message in these nominations, I think - a message about being who you are and doing what you love and not worrying about how other people will react to it. It's the same philosophy that underscores my parenting with my not-so-mainstream, outside-the box, bluegrass-inspired son. I'll say it again: the boy chooses his heroes well.
So, congratulations to Dierks on the most well-deserved nominations of this year's bunch. Up on the Ridge gets better every time I hear it. Bud and I will be tuning in on November 10, and we'll be hoping for continued good judgment from the members of the Country Music Association.
I would love to be even more wrong.
Wednesday, August 11, 2010
I mean, if you're here reading this, I'm sure you know about hopeful parents. But I'm talking about capital-H, capital-P Hopeful Parents, the online community that provides "grassroots support for parents of kids with special needs" - a space where, thanks to the tireless effort of its outrageously well-organized founder Christina Shaver, parents can come together through forum and chat functions and where parent-writers post daily - and, now, twice daily - about their lives, their children, and their hope.
I've recently joined the Hopeful Parents community of writers and will be posting there on the eleventh of each month. My first post is up - right here - today.
Hopefully, I'll see you there.
Sunday, August 08, 2010
A couple of years ago, I discovered that there was someone else out there on the Interwebz posting as Mom-NOS. I stumbled upon her accidentally, but, because we appeared to travel in different circles, I thought that the potential for misunderstanding seemed small. Truth be told, in real life I have a fairly ubiquitous Susan Jones sort of name, so I've gotten used to being one of many. For the most part, it hasn't been a problem (except, of course, for the time when Bud's dad and I were dating and he called the Susan Jones who not only lived on my street, but also had a phone number that was just one digit off from mine, and she told him she'd never heard of him... but I digress).
In the years that have passed since I discovered that other Mom-NOS, it seems that more of us have appeared and now I'm afraid we might have started tripping over each other. I have, sadly, not been able to stay current in my blog reading. In recent months, I have fallen behind in the lives of my blogging friends and have failed to reach out to expand my blogging network (which, I swear, is not from a lack of caring, but simply from a lack of time). Despite that, not long ago, I was on a friend's blog trying to bring myself up-to-date. I clicked on a link to leave a comment on a post that was weeks (months?) old, and there, in the comment section, was - I thought - a comment from me. But it didn't sound like me. It wasn't offensive in any way - it just wasn't the sort of thing I'd say and it wasn't said in the sort of way I'd say it.
I kept reading the comments and saw that my blogger friend had responded - and from her response I could see that she thought she'd responded to me. Suddenly, that theoretical potential for confusion that I'd tucked in the back of my mind became a tangible source of confusion, and I started to imagine the hurt feelings that could result if "I" started posting "I-don't-know-you-very-well" comments to blogging friends with whom I'd been through years of highs and lows. I could imagine my friends reading these comments and thinking "you don't REMEMBER that I went through..." and thinking that I'd checked out on them completely. Because, you know how it is - we moms in the autism blogosphere? We have been through a LOT together. We may never have met, but we know each other well. So an ill-placed "I-don't-know-you-very-well" comment? It would be akin to walking up to my brother and asking, "So, do you have any siblings?"
But, the Internet being what it is, and the slippery slope of pseudonymity being what it is, there is really no hope of reigning in this particular phenomenon. If anything, I imagine it will continue to grow. It is certainly another check in the column of "reasons to uncloak" - something I've begun to do in some circles anyway, but something that I still need to ponder a bit further.
In the meantime, know this: When I comment on blogs, I always, always, always link back here. If there is no link or if it links elsewhere, it is not me. I don't participate in chat rooms or discussion boards or support groups. I don't use this name for anything other than autism blogging. Almost all of my blogging happens here and when I post as a guest-blogger elsewhere, I will post a link to that guest post here.
I guess that's the best I can do for now. That, of course, and try to carve out more time to increase my presence in the comment sections of the blogging friends I care about deeply and the blogging friends I've yet to meet. Maybe then, with a little more effort on my part, I can start to reclaim some ubiquity in my own right.
Tuesday, July 27, 2010
And here's another: How do you introduce the concept if the child has autism, which means that 1) he has trouble understanding the abstract, and instead focuses on the very real and the very concrete and 2) he is prone to perseverating on issues and can zero in on a single topic for hours, days, or weeks at a time?
In other words, how do you introduce the concept of death to this child without planting the seeds of worry that will swiftly grow into "I will die" and "you will die" and "it could happen any time"?
How do you introduce the concept and then expect to ever have a conversation with this child about anything else for the rest of his life?
Weighty issues for a mid-summer night, I know, but it's a topic that has been on my mind a lot, because in recent days, some new words have crept into Bud's vocabulary: Guns. Kill. Die.
They are words he uses with a worried tone.
"Mom," he said as we were driving to summer school yesterday, "if people are killing me with guns, I'll hide behind a rock."
I nearly drove off the road.
"Bud," I said, "that would never, never happen. Where did you hear about people with guns?" I couldn't imagine the source. As far as I knew, Bud had no frame of reference for killing and he had no idea what a gun was. The only television shows that he watches are preschool programs, none of which have such dark themes. He doesn't even see commercials.
"From Chitty Chitty Bang Bang," he said.
Chitty Chitty Bang Bang? First, I don't remember people getting shot in Chitty Chitty Bang Bang, and second -
"Where did you see Chitty Chitty Bang Bang, Bud?"
"In fourth grade."
Which ended weeks ago.
Which means that he has been processing those images on his own for at least a month.
I reminded Bud that things that happen in movies aren't real, but since we were nearly at school, I didn't pursue the conversation any further. Instead, I decided to think about how to approach the issue more thoughtfully.
Tonight at bedtime, before I'd had a chance to develop a thoughtful plan, Bud raised the issue again.
"Mom, those are guns?"
"What are guns, Bud?"
"Guns are machines."
"No, I know that. What guns are you asking about?"
"At the pharmacy? Those are toy guns?"
"I guess they do have toy guns at the pharmacy. I don't really think guns are good toys."
"Well, I don't like them."
"Guns are bad, Mom?"
"Well, guns aren't toys, Bud."
"Guns kill elephants?"
"Did they shoot elephants in Chitty Chitty Bang Bang?"
"NO! They shoot people in Chitty Chitty Bang Bang."
"Who shoots elephants?"
"The hunters do!"
"In the BOOK! In summer school! That I read with Ms. Barr."
"Oh. What happens when they shoot the elephants?"
"They kill them."
"What does kill mean?"
"It means they die."
"Oh. And what does die mean?"
Bud thought about it. "Well..." he said, "it means they get sick."
"And then what happens?"
"They go to the doctor."
"And what happens after they go to the doctor?"
"They take their temperature."
Ah. His constructed understanding of killing and death - already disconcerting and alarming to him - is missing a critical element.
Which is why I find myself, in the middle of this lovely summer, with dark and weighty issues on my mind.
Where do I go from here?
How do I help my son understand the cycle of life and death without inciting panic?
And is preserving his naivete and allowing him to stay happily unaware truly the more compassionate path? Is it wise to take the risk that Bud will be introduced to the very idea of death when someone he loves is gone from his life?
I tried to introduce it to him several years ago when his goldfish died, but the losses barely registered with him. The fish were here, the fish were gone. The impact was minimal. But Bud is in a very different developmental place now, and the stakes feel a whole lot higher. If I don't process it with him, he will surely continue to process it on his own.
So, really: how do you do it?
How do you help a child with autism and anxiety understand death without killing his joyful and optimistic approach to life?
Saturday, July 03, 2010
This spring, however, with the anxiety of the end of school, the unknowns of summer, and a new school year looming large on his horizon, Bud started to have trouble sleeping again, and his 9 mg dose was rendered ineffective. The doctor he sees for medication management authorized us to go up to 12 mg a night, but before we got started with that, Bud had an appointment with his pediatrician, who asked me about the melatonin I was giving Bud and, specifically, about where I'd been buying it. I told her I usually picked it up at Target or the local pharmacy, and she gave me a valuable tip.
She said that melatonin, like most natural supplements, is not regulated, so a 3 mg tablet may not actually contain 3 mg of pure melatonin. She suggested that I go online and order "pharmaceutical grade melatonin" and try that before I increased Bud's dose. It worked beautifully. Bud's holding steady at 9 mg a night and has been sleeping soundly - even during the past week, when we were away from home on vacation.
I wish I'd known about this years ago, so I'm passing it along, in case any of you are having hit-or-miss experience with over-the-counter melatonin.
Sleep well, my friends.
Wednesday, June 30, 2010
This is not exactly a new phenomenon - for years, he has avoided Keith Urban's song "Everybody" because, he says, "it makes me strain." But recently, there seem to be more songs that are pulling his heartstrings in all the wrong directions, and he's having none of it. I get it, since I tend to be the same way with books and movies - I mean, life can be tough enough all on its own; I don't need heartbreak and despair in my entertainment. So, when a song like Carrie Underwood's "Just a Dream" comes on and I hear Bud's cautious "Mom?" piping up from the back seat, I quickly change the station and find a more upbeat tune.
Sometimes, though, Bud just wants to provide a little commentary on the music that's playing or ask a question about the lyrics, so I try not to make assumptions about how a particular song will affect him until he lets me know. The other day, Bud and I were in the middle of a long road trip when Trace Adkins' "I Wanna Feel Something" came on. It's not a new song and Bud has heard it a million times before without comment. This time, though, as the song came to its chorus,
"I want a heart that beats and bleeds,
A heart that's bustin' at the seams,
I wanna care, I wanna cry, I wanna scream.
I just wanna feel something,"
I heard Bud's voice from behind me. "Mom," he said, "it's satisfying."
"What's satisfying, Bud?"
"Trace. 'I Wanna Feel Something.' It's satisfying."
"You feel satisfied?" I asked.
"Yeah," he said. But the "yeah" sounded just a touch too glum to me. Something wasn't adding up.
"What does 'satisfying' mean, Bud?" I asked.
"Means it makes me sad," he answered.
We changed the station.
Saturday, June 12, 2010
And yet, I find myself thinking lately about a post I wrote several years ago about the down-side of being a "high functioning" child, as I find myself responding to Bud with higher expectations, lower levels of patience, and increasing frustration with his behavior.
I'm reminding myself that I need to take a step back and remember what's going on here.
It's one of the dangers, I think, of having a child with a "hidden" disability. The more he "looks" like other children on the surface, the quicker I am to blame him for troubling behavior, instead of recognizing that it is merely another manifestation of his disability.
I think about it this way: If Bud were blind, I doubt I would hear myself saying "You have a cane. We have been over this a million times. Would you PLEASE stop bumping into things?" I'm virtually certain I would not blurt out in frustration "CAN YOU JUST WATCH WHERE YOU'RE GOING?"
I have a hunch that I would be quicker to remember that visual impairment is the very definition of blindness, and that the behaviors that stem from that are merely signs that there is more progress to be made.
Why, then, can it be so difficult to remember that most of Bud's troubling behavior stems from the core deficits that are the hallmark of an autism diagnosis:
Difficulty with appropriate social interaction;
Restrictive interests and repetitive behaviors.
When I look at the behaviors that make me want to scream - that do, in fact, sometimes make me scream - I can see how neatly they fit into these three little boxes.
Bud has made - and continues to make - extraordinary progress. His skills compound. His abilities soar. And he is still autistic. The core deficits of autism will continue to manifest in new ways for him, signalling our need to shift approaches and rethink assumptions.
It is MY job to watch where we're going.
Tuesday, June 08, 2010
In case my early praise wasn't enough to sway you, I've asked an uber-fan to step in as guest blogger today to offer you his own review. I gave him the template, but the assessments are all his own.
Ladies and gentleman, I give you - Bud:
I like Dierks Bentley's CD Up On the Ridge because it makes me happy.
My favorite song on the CD is "Up On the Ridge." I like it because it's very awesome.
My second favorite song on the CD is "Fiddlin' Around." I like it because it makes me good.
Some other songs on the CD that I like are "Rovin' Gambler" and "Fallin' for You."
The instruments that I like hearing on the CD are a guitar and mandolin.
I think people should listen to Up On the Ridge because it's nice.
The best thing about Dierks Bentley is (he's) the best man ever.
You can download Up On the Ridge right now, right here. Trust us: it's nice.
Saturday, May 29, 2010
Still, the forecast for Tuesday called for temperatures over 90 degrees, and an overheated boy means an unpleasant school day even if the boy is overheated by choice, so last weekend I started talking to Bud about his impending clothing transition. He was having none of it. His logic went something like this:
Short are for summer.
Summer starts in June.
It is still May.
Therefore, arms and legs must be covered and jackets must be worn.
But I was relentless. I talked about the importance of wearing the right clothing for the weather, regardless of what the calendar says. I wrote a social story. I asked the team at school for reinforcement. And I put a call out to friends for words of advice.
It was my friend VTBudFan who offered the best, most succinct advice - four letters, brilliant in their simplicity: WWDW?
What Would Dierks Wear?
It was my ace in the hole - my sure-fire solution if my social story went belly-up. I had no doubt that a picture of Bud's hero in shorts in May would have the desired effect.
But I never got to test the theory.
By Monday night, the social stories and conversations with Mrs. Nee had worked their magic, and Bud slept in summer-weight pajamas, with his shorts and t-shirt laid out and ready for the morning. He's been happily weather-appropriate ever since. (Interestingly, because Bud has the unsettling habit of reading my mind, I did find him in his room just a few days later, rummaging through his drawers to find a sleeveless t-shirt "like Dierks wears in 'How Am I Doin'.'")
But I'm holding that ace up my sleeve, and I'm thinking of ways that it could be adapted. WWDE? - What Would Dierks Eat? (I'm thinking broccoli.) WWDR? - What Would Dierks Read? (Chapter books, presumably.)
The possibilities are endless.
Sunday, May 23, 2010
You know I try to be vigilant about protecting privacy in my blog posts, right? So, without revealing too much, I'll just say that recent views of the history tab of the shared laptop indicate that:
1) Someone in my household has developed some healthy curiosity, and
2) Said person is a master of the art of the Google.
I need software that will block that which should be blocked, but will allow for reasonable surfing without the accompanying clarion call of "Can you enter a password for me?"
Saturday, May 15, 2010
It's true. It was the ultimate betrayal. I went to see Dierks Bentley and I didn't tell Bud. I know - it's terrible. There's nothing you could say about me that I haven't already said about myself.
I'm trying to convince myself that I wasn't all bad, though. It was a long drive - two and a half hours - to a late-night show on a school night. It was loud and crowded and, now that I think about it, probably a 21-plus show. So I was exhibiting good judgment, right? Good, sound parenting practice.
But it's hard not to feel bad for Bud. Because, the show?
It. Was. Awesome.
Seriously. Beyond awesome. It's the fifth time I've seen Dierks live, but it was like nothing I've ever seen before. He's doing a limited tour in small venues with bluegrass giants The Travelin McCourys. The show features some of Dierks's greatest hits played with a bluegrass flair, interspersed with tracks from his upcoming bluegrass-inspired album, Up on the Ridge, with a smattering of fun, crowd-pleasing covers of songs from artists that span from George Strait to Pearl Jam. And because he's playing such small venues - this one was a sold-out, standing-room-only crowd of about 500 - it all just feels like an incredibly great party in someone's sizable basement. And for as much fun as the rest of us were having, no one in the room was having a better time than Dierks Bentley.
It was awesome.
There was some good news for Bud, though. As luck would have it, I happened to go to the show on the first night that the new album was on sale at the merchandise table (it won't be available in stores until June 8), so I was able to pick up a copy to take home.
And the album is as awesome as the show. It is, simultaneously, classic Dierks Bentley and a complete departure from his previous albums. There are songs like "Draw Me a Map" that resonate so completely that after just a few listens I feel like I've known them forever. And there are others, like Bud's favorite, "Fiddlin' Around" - a fiddle-driven up-tempo track that makes it impossible to sit still - that are totally new sounds. There are tracks written by Bob Dylan and Kris Kristofferson and U2. There are appearances by Del McCoury and Miranda Lambert and the Punch Brothers and Jamey Johnson.
When taken as a whole, Up on the Ridge is hard to define. It's too country to be traditional bluegrass, but too bluegrass to be mainstream country. It is, I think, a hair-dryer album in a toaster-brained industry. Of course, I know nothing at all about the inner workings of the music world, except what I glean from this side of the radio - but what I observe is a market that sometimes seems to reward conformity over innovation, and an industry that too often uses valuable prime-time network TV slots not to showcase the best of what country music has to offer, but to market a select number of carefully groomed country artists, promoting them as potential crossover artists to the lucrative pop-dominated airwaves.
But, then, what do I know?
In any case, it seems to me that Up on the Ridge flies in the face of all that. It is Dierks Bentley performing directly from his heart, and it leaves his audience - or it leaves me, anyway - thinking, "Ah. So this is who you are." And I sure do like who he is.
But all of that barely matters when I see Bud's reaction to the album, as his hands fly across the strings of his air guitar while he sings along to the title track. The bad news is that it will likely inspire requests that will be hard to meet. He's already asked me if he could be Dierks's new mandolin player. And I imagine that his request for a dobro will be coming soon. But really, it's all good, because Up on the Ridge inspired much more than that for Bud.
Remember back at the beginning of the school year, when I shared my hunch that Bud's friendship with Dierks would make the idea of friendship more appealing to him? And then, remember how he's spent a year in a classroom of peers who are helping him become their friend?
Well, Bud's second reaction to Up on the Ridge - immediately following his request to join Dierks's band - was this: "I'll bring this to school tomorrow. The kids are going to love this."
Did you catch that? Bud thought the album was so good that he wanted to share it with his friends.
How awesome is that?
So, I have three take-away messages here, and in case you've missed them, I'm going to re-cap:
1. If Dierks and the McCourys are coming anywhere near you, don't miss the opportunity to see them, even if it means travelling two and a half hours each way and having to go to work the next day on only three hours of sleep. Trust me on this.
2. Don't let the word "bluegrass" scare you. Up on the Ridge will make you love Dierks more than you already do.
3. The good news is that sometimes a little low-stakes bad-mom moment can turn out to be not so bad at all. In fact, sometimes it can lead to something truly awesome.
Watch more AOL Music videos on AOL Video
Wednesday, April 14, 2010
Friday, April 02, 2010
In the days that followed my meeting with Bud's classmates, every afternoon yielded a new surprise as I unpacked Bud's backpack and unearthed the treasures inside. One day, it was a tube of paper that unfurled into a long purple-based splatter-paint mural that Kallyn, Laurie, Lily, Nora, and Jennifer had made for Bud. Another day, there was a letter to me from The Amazing Platypus, who wrote, "Thank you for coming to our class and helping me understand Bud and how to be a better friend... If Bud hadn't been in my class I would still be viewing him completly differently." (He also thanked me for the blog name.)
Another day, there was a stack of photographs from Pajama Day, which featured Bud in the center of a circle of friends, all of them sprawled on the floor watching a movie at a "slumber party" at school. Another day, there was a picture that Noelle had drawn for Bud. Another day, one from Nora. Another day, Bud came home with a Zoboomafoo video tape that Sean had found at home. Sean didn't watch it anymore, so he brought it in for Bud, who, Sean knew, is a big fan of Zoboo.
That night, Bud wrote Sean a thank you note, letting him know how much he liked the video, and he brought it into school the next day. That afternoon, I got an e-mail from Ms. Walters., who wrote: "Sean was SO pleased to get a note from Bud today - He read it, and turned around and said "Thanks, Bud - you did a great job! I'm glad you like it!" And then Sean turned to me and asked,"Can I keep this?" I smiled, ruffled his hair, and said, "It belongs to you, of course you can keep it!" "COOL!" he shouted, and ran for his backpack to tuck it away, and as he came back to his desk with a huge grin he looked up and said, "That is SO awesome!"
In the same e-mail, Ms. Walker told me that she was sending me a stack of "quick writes" that the children had done in class. She explained that the class was continuing to read the book that started it all: Joey Pigza Swallowed the Key and that they'd gotten to a section in which an adult said about Joey, the boy with ADHD, "They shouldn't let messed up kids go to school with regular kids!!" Ms. Walker wrote, "There was an audible collective Gasp! as I read that line. They were simply stunned into silence. I told them we'd revisit how they were feeling the next day and the writing is the result."
That afternoon, I opened Bud's backpack to find a stack of "quick writes" that the children had done in response to the writing prompt:
"In Joey Pigza Swallowed the Key, Maria's dad is angry and yells, "They shouldn't let messed-up kids go to school with regular kids!" What do you think of this? Why? Include some examples from your own life/experiences at home and at school."
The children's responses were beautiful, creative, and heartfelt. Some were written as letters to Maria's dad. Others were written in Joey's voice. Others were just raw, genuine reactions. And they took my breath away.
"Mr. Dumbrowski... Sometimes kids like Joey can't control themselves at times... I have a kid like Joey in my class and his name is Bud at times he can't control him self. But hes an asowme kid... You know the old saying don't judge a book by its cover. Well, Joey's the book and your judging him by his cover. So think before you say."
"At my school there is different kids to but we all learn to get along together. In my class we have a chiled with autism and to get to understand him better his mom came in to tell us more about him. We can learn to work together with different poeple. We can also learn to exeped people with autism and with disabililetys. We can learn to treat each other fairly. We are lucky as a class to have a kid with autism because we can learn how children with autism learn, play, speek, and think."
"We are all people and we are all diffrant. So I don't think anyone should get look down at because thay are diffrant. I think any class with someone who is diffrant is realy lucky... I have a kid in my class named Bud he is diffrent but I whould never look down at him because he is diffrent. but he isn't realy diffrant he is still human to. he still learned all the same stuff just a little diffrent."
"Dear Mr. Dumbrowski, I think this is very mean to yell at kids... We have kids at our school that have autism. We are so lucky as a class because we have a kid that is different from us but we treat him like us... Autism is not something to yell at anyone for having. When someone is born with autism there is know way they are going to lose it."
"Dear Mr. Dumbrowski, I think your wrong in so many ways Because I have a Boy in my class whith autism and he isnt messed up he's Just different and so is Joey... So next time you say that think of what I said."
"I think Maria's dad should not of said that... I have had a lot of experience with a Diffrent kid in my class named Bud. He has autism, but I have had a great experience and I love being in his class... I really think Maria's dad should have a experience with a diffrent kind of kids and he might change his mind, but he should not of said that and it really made me mad because it dose not matter what he looks like or How diffrent He is we are all together in one world and no matter what happens we are all the same in some way."
"I think he is wrong because someone in our class has dissabilitys, And nobody minds. I think Maria's dad is messed up! This guy should go to jail!... I believe that just because you've got autism or any other dissability doesn't mean he or she has something wrong with him."
"When Ms. Walker read that line It really shocked me. I realy don't like Mr. Dumbrowski for saying that. (My heart sangk.) I thingk are class is lucky. Because people like Bud is abel to partisapat in every speshil and learn the same thing as us but in a different way."
"I think Marias dad has mest up thinking. Every one shoud be abal to go to school... My school has lots of kids how are difrint. But every one should have a chance... I think it is good that all kids can go to school, lern, and try to make friends. experiences can be magnifasint and exstrodany and speshal and learn things about each other."
"I have a kid in my class who has autism and he is still a supper good speller and is a cool kid to have in my class... P.S. Mr. Dumbrowski you stink."
"Joey is not messed up, he is just differant and everybody is differant in their own special way. Having kids in your class or world are fun, hard, and exciting, you can learn a lot by how others learn. It is very enteresting if you can just listed to them and you can learn a bunch like I did when a kid in my class whose name is Bud he has autism and every day I learn new things."
"Life with different kids can be hard, easy, and very fun. Theirs a kid with autism in my class, and he is very nice... It's good for him to be in classes with normal people because everyday we learn new things, And so does he. He is funny, fun, nice, and very smart... We are lucky as a class because he teaches us new things everyday. He always makes us laugh and tells us funny jokes and gives us high fives all the time. He is very fun to have around. He is a very good friend too."
"Dear Mr. Dumbrowski, I think you should go to angre manigment because you were harsh on me and I don't realy like that. OK! I'm not trieing to be mean like you were to me. Sinserely, Joey Pigsu."
"Dear Mr. Dumbrowski, I think that kids who have a disabielaty should go to school with kids that don't have a disabeilety... I like having different kids in the classroom. Its nice to learn about how somebody else might learn."
The Amazing Platypus wrote:
"What I think about this is that he is wrong because everybody deserves to show what they can do even if they are different... I have a autistic kid in my class he doesn't do stuff like us but he does math language and other stuff but at a different level... Are you messed up Mr. Dumbrowski?"
"Just because people are different doesn't make them "messed up." I think this because I go to school with "different" people and it doesn't affect anything with anyone else in my school. School isn't just about Reading, Science, or Writing. It's about getting everyone what they need so that they can learn. It is an honor to have autistic people in your class because you can really learn from them."
"Dear Mr. Dumbrowski, I think your not nice. Kids should have a chance and... can I get back to you on that? Kids should have an equal and fair chance to learn. Just yous better, easier techneeks of learning. There should be trained teachers that are special for kids like me. P.S. Tell Maria I'm sorry. Pleas. See ya later, Joey"
"I think thats awful... Just cause there diffrent dosent mean there wrtong... Autism is just where you take medicen. I wonder if you had a kid in your grade? Some are diffrent becauseof there brain. It dosent mean there diffrent."
"Our class is so lucky that we have a school that has different kids because we learn from them and they learn from us. I can't wait until I learn even more... I have been in the same class with Bud for four years. I have learned so much about autism and other disabilties. And I think you should learn more before you go around being mean to kids."
Ms. Walker wrote that following these reflection pieces, they had an AMAZING class discussion in which the kids talked with each other about their own disabilities and together discovered the depth of difference in their classroom - a depth that goes far beyond autism alone. She wrote, "Some of the kids took the ultimate risk today when they shared, without any prompting, with their classmates about the meds they take and why, and how they help, and some of things that are hard about taking them, like getting to sleep."
But the kids aren't stopping at the door to their classroom. Ms. Walker wrote, "The magic continues - they want to use our hallway bulletin board to write open letters to the school, and the title for the board would be along the lines of "Different kids make a better world." They're learning "We are the World" in music:
We are the world, we are the children
We are the ones who make a brighter day
So lets start giving
Theres a choice we're making
We're saving out own lives
its true we'll make a better day
Just you and me"
And then yesterday, April 1, the first day of Autism Awareness Month, another package came home with my name on it. Inside was a stack of thank you letters from the children, decorated with care and filled with words that made me want to reach through the pages and hug every one of them:
Nora's "I think it's really cool how much you get him and how you both understand each other. You're the purplest!"
Catherine's "I feel great to be a part of his community in school. Evry time I hear I'm going to be in his class I always can't wait."
Molly's "Thank you so much for coming in. I learned so much about autism... You are a great mom."
Kallyn's "I learned so much and I think my friendship with Bud has grown. I been able to talk to Bud a little more and been feeling really good with where I am at with Bud and I think that now I know more about Bud I can relate to him better."
Sean's "Even though I went to recess it is because I am a kid who if he doesn't get outdoor time I get really bouncy and over excited. But I learned all about the part about toasters and hairdryers and how our buddy Bud needs movement breaks... Still the purplest!"
Noelle's "That has helped me learn a lot more about Bud. He is very cool to learn about... My life with Bud has been really cool so far."
Brandon's "After you came in I understood Bud and I learned how I can help him play and learn."
Laurie's "I enjoyed your visit SO much. I wish you could come in again."
Simon's "We learn more about autisim every day."
Kelly's "I learned that Bud does not care that he is differant and that he is a hair dryer in a toaster brain world."
Travis's "Thank you so much for coming in to our class. I know I learned a lot... It ment alot to our class."
Lily's "I don't think Bud is really actually different than us. He's a human that just thinks and learns different than us. I've known him ever since first grade and even then I didn't think he was that different."
Kayleigh's "Also, thank you for adding us in your blog... I want to write blogs as good as you when I grow up. You have an amazing talent. You inspired me to write blogs."
Damian's "It is cool to have Bud in my class because he is realy funny."
Max's "I'm still learning about Bud, which is very fun because every time I learn something new I get a laugh from all my classmates as well as me."
Jennifer's "That was AMAZING! I didn't know much about autizm until you explained every one of those stories. It made me think what would it be like to have autizm?"
Carla's "To me it was inportin to find out what Bud had and it was speshal that you did the presentashun about Bud's disability."
Zoe's "The whole time you were talking I felt like I was different... I don't know why, but when you were talking I felt REALLY relaxed and happy! I mean the "whole time" I was relaxed."
Nathan's "Thank you 1,000,000 times for coming! You opened a new door for me to walk through. I learned so much!"
Dan's "I think it's cool that people all over the world are reading about our classroom. Some people are quick to judge Bud. Do you know the old saying don't judge a book by its cover? Bud's the book and people are judging him by his cover. But our class sat down and are reading a never ending book. The book is never ending because you keep learning more every time you read it. P.S. It's a really great book."
And the neatest things about their letters, beyond their remarkable insights and their outstanding artistry? The children signed the letters with the names I'd given them on the blog, with one difference: they all had the same last name - NOS. Sean-NOS. Laurie-NOS. Nora-NOS. And on and on and on.
All different, and yet all the same.
Connected to each other. Connected to Bud and me.
Connected like family.
And at the bottom of the pile of these remarkable letters? A family portrait - a gift to Bud and me - a picture of all of Bud's classmates and both of his teachers, standing under a sign that says "World Autism Awareness Day. We are Bud's Buddies-NOS," each of them holding a sign with their NOS names.
It's a picture I'll treasure for the rest of my life.
As I look at the picture, I keep having the same thought. In response to my posts about my visit to this classroom, I've gotten a lot of encouragement to turn it all into a book. And I'm thinking about it. But, honestly, here is the book I really want to write:
In twenty-five years, I want to meet up with these children again and find out where they are. How many of them will be teachers, creating dynamic inclusive classrooms? How many will be employers of people with disabilities? How many will be parents, raising children as remarkable as them? How many will be finding ways to celebrate difference in their homes and in their neighborhoods? How many will be taking active roles in their local and state governments? How many will be speaking out against injustice and making their thoughts count at the ballot box? And how many of them will look back at this year, at this classroom, at these teachers, at these classmates, and recognize it all as a transformative experience in their lives?
These children are going to change the world.
THAT's the book I want to write. And, as Dan says, "P.S. It's a really great book."
Happy World Autism Awareness Day.
And, oh, I almost forgot. The class sent along something for you, as well:
Monday, March 29, 2010
It seems that while I have been blissfully posting about my son’s wonderful classroom, much of the rest of the autism blogosphere has been on fire in response to a post written by a blogger called Smockity, who writes at Smockity Frocks.
First, let me offer this caveat: I know next to nothing about Smockity. I have read just one of her posts. My understanding is that she has no connection to autism and that, in fact, she had no idea that she was writing about an autistic child when she wrote a blog post called "In Which Smockity Considers Jabbing A Ball Point Pen Into Her Eye," which has since been removed from her blog, but is cached here.
In brief: Smockity's post was, I think, intended to be a humorous account of a visit to the library, during which she and her children encountered a grandmother with a child who bounced on her toes, flapped her hands, and used perseverative language. Most of us in the autism community recognized this child - and this grandmother - instantly. Smockity did not. Her post unfolded as a diatribe against the sort of parenting (or grandparenting) that yields rude, self-indulgent, ill-mannered children.
Much has been written about the post, the response, and Smockity's response to the response. Both Squidalicious and Liz Ditz have posted links to responses that reflect outrage, disbelief, and the feeling that I had when I read Smockity's post - a sinking recognition that perhaps all those times when Bud has struggled in public and I've left a place red-faced and anguished, afraid I'd been judged or mocked or disdained by the people around us, I'd been right. As I read, I remembered why I stay home so often, skipping the trips to the places I want or need to go, simply to avoid the potential of having to manage a difficult situation under public scrutiny.
But, again, I don't know Smockity. I don't know her motivation for writing the post and I don't know how she feels right now. She has replaced her original post with a new message, in which she says that she won't respond to attacks on Twitter, e-mail or blogs. Let me be clear - I don't intend to attack Smockity with this response. But I also try to put myself in her shoes.
I'm certain that there have been times in my life when I've said something that I thought was humorous, but which actually offended someone. There are times when someone has called me out for being thoughtless or insensitive and I have reacted defensively. There have been times when I should have said I was sorry, but - because of my defensiveness, or my pride, or my embarrassment - I didn't. But I would like to believe that, in each of those cases, though I was unable to step up and own my mistakes, I spent countless hours in private reviewing them, imagining do-overs, and preparing myself to act differently in the future.
I'd like to believe that Smockity is doing that now. If I were her, even if I said I wasn't going to read the blog posts that were written about me, I know that I wouldn't be able to stay away. I'd read them privately, and I'd seethe, or I'd cry, or I'd scream, or I'd feel really, really bad. So, I'm writing this post in the hope that Smockity, or others who saw themselves in her words, will read it and think.
My full-time job is in college student affairs, and there are two things we talk about a lot in my department: utilizing teachable moments and providing opportunities for student learning. We recognize that students may not take advantage of the opportunities we provide, but we provide them all the same. We look for a moment to present itself, then we try to shape the experience or the conversation in that moment to meet a student where she is and to help her to consider a picture that is just a bit bigger.
This feels like a teachable moment, and I'd like to provide an opportunity for some learning.
You see, I saw myself in the grandmother in Smockity's post, as she stood with her granddaughter, waiting for Smockity's children to finish on the computer. Smockity writes,
"The girl never left her position at the computers and continued bouncing,
flapping, and proclaiming, “I’m waiting patiently! It’s almost my turn! I’m
being patient, Grandma!” to which Grandma would reply, “That’s right,
Preciousdarling Angelface, You are being very patient. Just one more minute.”
This was repeated… repeatedly.
Do you ever get the distinct feeling that, although a speaker is not addressing
you directly, the message that is being spoken is intended just for you?"
Of course, I can't know what the grandmother's intentions were, but had I been in her place, I would have done the same thing. Through my inflection, my repetition, and my use of language that seemed both intentional and unusual, I would have been trying to send a message to Smockity. My message would have been something like this:
I know that your children were at the computers first, and I know that I have no right to ask them to step aside and make room for my child, but here's the thing: you have NO IDEA how important this activity is to him, nor how hard he is working at holding it together right now. Your children look delightful and I'm sure they enjoy playing on the computer, but I have a hunch that this might be one of many things that they enjoy. I imagine that your children play with friends, that they enjoy board games, that they have a variety of interests, and that if this computer were not available to them, they would be able to think of ten other things they'd enjoy doing just as much. But, I'm telling you, that is not the case for my child. My child has been talking about THIS game on THIS computer at THIS library all week. And by that, I don't mean once a day all week. I mean from the moment he has woken up until the moment he has fallen asleep, he has talked about nothing but THIS game on THIS computer at THIS library. Our day, our week - it seems, even, our life - has been built around this moment, and I have to tell you: if this computer is not available to him, he will not be able to think of ANY other thing he would like to do, because right now, at this stage in his life, he does not play with friends, he does not enjoy board games, he does not have ANY other interest beyond THIS game on THIS computer at THIS library. And I know that's not your fault or your problem, and I know that your children have every right to keep on playing until they're finished, but I'm BEGGING you, PLEASE - can you help me out here? Can you intervene? Can you suggest that maybe they could finish up in five minutes, ten minutes, SOME predictable time frame so that I'll know how long I have to manage this situation and help this child hold himself together? Please?
That would have been my message. But my WORDS would have sounded something like this: “That’s right, Preciousdarling Angelface, You are being very patient. Just one more minute.” Repeatedly.
And the flapping. Let me tell you about the flapping. Bud's flapping provokes two simultaneous, equally strong reactions in me. The first is trepidation, because Bud's flapping in public instantly presents him as "other" to the strangers around us, as this child's did with Smockity. But the second is delight, because when Bud flaps, I know that he is experiencing genuine excitement and joy. Bud's flapping is a physiological response to emotion, and he flaps because his hair-dryer brain processes excitement and joy differently from our toaster brains. Bud flaps with excitement the same way that people laugh when something is funny - automatically, immediately, and reactively. Bud could no more keep from flapping when he's happy than I could stop my stomach from growling when I'm hungry.
That's what I'd say to Smockity, if I had an opportunity to say something to Smockity. But she may not come over here. She may let the opportunity pass.
So, here's another idea. This Friday, April 2, is World Autism Awareness Day. Autism mom and blogger Jean "Stimey" Winegardner has written a measured, thoughtful response for The Washington Times, which is directed to people who don't have direct experience with autism. Let's pass it on to the people we know, and ask them to pass it on to the people they know who don't know anyone with autism, but who may encounter them in the supermarket, on the playground, or in the library. Let's give people an opportunity to think about their reactions before they are forced to react.
World Autism Awareness Day. It's a teachable moment. Let's provide an opportunity for a little learning.