change

The following is an excerpt from ~ The Professor, The Dean And The Revolution.
~ Diary, October, 2011
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I just had the honor of connecting two people – a liberal arts college professor who is working on creating a comprehensive system of support for ASD kids on her campus and the Dean of Students at a polytechnical institute that already has such a system in place. After hitting ‘Send’ I am overwhelmed with HOPE. The world is changing. We don’t always see it, and God knows we don’t always feel it, but thanks to people like the professor and the dean, doors will be open to our kids that never were before.

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The other day I shot a quick e-mail off to a reader in response to a comment that I loved. I wanted to let her know how much I appreciated her words. I didn’t expect to hear back. I sure as heck didn’t expect to hear THIS back:

Jess,

I read your blog first thing every day and it’s been an inspiration on so many levels. I’ve been working for my boy for a long time. I started reading diary about a year ago, and it’s nudged me to get working for the broader cause.

My guy is two years older than Brooke, so we’re facing down middle school, but I’m a college prof. and I’m looking to the longer term here. I started thinking about the handful of clearly sorta ASD kids on my campus, and wondered about how we could do better for them — and for my Allen and your Brooke, even at an elite school.

Now we have a little working group across Counseling, Res. Life, and faculty support.

We’re looking big, to a full campus awareness movement and set of supports. It’s going to be SO cool.

So, one more way Diary is working on the world.

: )

Thanks again.

I was, for the millionth time, blown away by the ways in which people in this community are taking the world into their own two hands, finding partners and together, changing the order of the universe.

I believe what I sell here. I really do. Down to my very core I am convinced that by talking to one another – by telling our stories – we can make a better world for people with autism, and by extension, for all of us. NIfty how that works, really.

But even Pollyanna has her days. Days like yesterday that can break even the strongest of spirits. Days where I wonder if I’m simply shouting into the wind, soothing my conscience by convincing myself that I’m doing something because truly, there’s nothing I can do.

It doesn’t take much to make it all feel futile.

Nor does it take much to fuel the flames of hope. To make it ALL worthwhile. To prove that one person – one story – one moment of inspiration can CHANGE things. Truly, meaningfully change things.

The other day I sat with Brooke’s Inclusion Specialist, fine-tuning her IEP and signing off on the portfolio that she would send to the DOE in lieu of taking our state’s standardized test. I asked the IC if she would mind if I read something to her. I needed her reaction. I needed to make sure that, even in third grade, we had an eye on the future.

I read a comment aloud from my post about the MCAS-Alt. One that talked about ‘the alternate track’ that Brooke was currently on given the fact that we are, by necessity, significantly modifying her curriculum. One that might, if its trajectory were to continue without change, not lead to a traditional high school diploma.

We talked about the absurdity of trying to divine the future, but so too, the need to try. And the IC asked the $64,000 question – Will having a traditional diploma matter? 

My answer was what it had to be – I have no idea. But, if it is ever within reach, then we owe it to Brooke to make sure that we make it an option. Not because it matters in and of itself (it may, but so too it may not), but because it may be the ticket to whatever comes next.

And then I told her. “You see, I know this woman at William and Mary. And she’s changing things. And because of people like her, by the time that Brooke gets to high school, college may very well be an option for her. I mean, God, who knows what Brooke may want to do by then. Or be capable of doing by then. She changes so much year after year – by God, N, she’s READING.” I wiped away a tear. “My girl is READING. Three years ago? I never could have imagined how we’d get here. So heaven knows what she may be doing in ten more years. And with people like Karin, well, anything will be possible.”

So to those of you who climb up on your soapboxes and tell your stories, to those of you who wonder if there’s any point to it or if you’re shouting into the wind, I offer you the following.

Karin Wulf, Associate Professor of History and American Studies, College of William and Mary, in her own words.

Neurodiversity at the College of William and Mary; or, Last April, Jess Kicked Me

Last April I did something crazy:  I posted a status update on my FB page. Except for an inadvertently public grumble when the Scrabble link is down, I’m not a public sharer.

So you can only imagine how extreme a blog post is for me.

But what prompted me to post that status update is what brings me to guest on Diary today.  Jess kicked me.

It’s true.

I’m not sure how she did that, seeing as I was sitting down, reading Diary with my breakfast as I do every morning, and that I was in Williamsburg, Virginia, she was in Boston, and she didn’t know me from anyone else among her legion of fans.  Those of you who read Diary regularly, though, know that Jess has a way of reaching out to illuminate, soothe, cajole– and incite.

After I read Jess’s incredible letter to the President last Spring about the Light it Up Blue campaign, I posted a FB status update on April 3rd explaining why, on my wonderful boy’s 10th birthday, our porch light would be blue.

That’s when she kicked me.

Or poked me hard anyway.

“Nice status update there, but what else are you going to do?”

I got to thinking about what I could do, beyond daily vigilance and advocating for my son.

I immediately thought about the college students I advise, both undergraduate and graduate students, and how often I had wished that I could say to the wonderfully quirky but struggling ones “is there anything I can do to make this easier?  Can I hook you up with someone who can help you with ___?”

But I didn’t really know how that sentence would end, even if I could start it.  I wished I could have a “safe space” sticker on my door.  I knew I wanted to be able to look these kids in the eye (and let them look wherever they wanted to!) and tell them that they are valued.  I wanted to be able to reassure the parents who contacted me that it was okay, that I got it, that we could help.

I wanted to be able to say that there were people all across campus who believed—who knew—that celebrating neurodiversity is deeply and profoundly a human rights issue, but that it is, even more fundamentally, about maximizing human capital.  We can not afford to lose these kids, and their potential for contributing to our college, and our society.

I wanted to be able to say “Autism” out loud.

And now I can say it.  My story is about what’s happened in this last year, and what’s happening right now at a truly wonderful college.

I’m a history professor at the College of William and Mary.  You might have heard of us?  We’re an old school (1693).  We’re a Public Ivy (Ivy League education, public school cost), one of eight that includes a few other schools like UC Berkeley and Michigan.  We’re smallish (6000 undergrads).

We have alums famous for all sorts of accomplishments:  Thomas Jefferson (1760-62, he defies biographical sketch)Robert Gates (BA, History, 1965, former Secretary of Defense and now our Chancellor); Jon Stewart (BA, Psychology, 1984, apparently he has a talk show), and a personal favorite, Lynn Cannon (BA, Psychology and Education, 2001, co-author of Unstuck and On Target, a fantastic executive function curriculum, parent edition out soon, but the teacher edition is brilliant).

If you want to send your kid to a top-flight school that’s impersonal, where the best scholars don’t teach, WM isn’t for you.  My colleagues are award-winning scholars and award-winning teachers.

This is a place where I just happen to have an honors student, the top student in my department, writing a thesis on nineteenth-century treatments for cognitive disability—while she is running the campus student group for disability advocacy that she founded.  Among other things.

This is a place where, when I started writing emails last April asking what we were doing for students on the spectrum, the Director of the Counseling Center said “Let’s do something!” and then led the way toward forming our Neurodiversity Working Group.

It’s a place where the Provost, within hours (and seriously, he’s kinda super busy running things), answered my email request for an appointment “to talk with you about something that I think is going to very important for the College,” with “How about Monday?”

It’s a place where, on April 17th, that Provost will introduce John Elder Robison at the culminating event of a day that will mark Autism Awareness Month and launch an initiative our Neurodiversity Working Group has been working for a year to develop.

Our group has brought together faculty, staff, administrators, students, alumni, and members of the community.  We’re now going to be housed in the Office of Diversity and Community Initiatives (yes, not just awareness, but acceptance, and celebration). We have identified a training program for the resident advisors, and a consultant for the student-to-student community building who can help us to get started.  Senior administrators are committed to seeing this through, and the more people who learn about the initiative, the more people want to get involved.  We’re raising money.  And I made some cool stickers.  : )

We know a couple of things about college students and Autism.  The first is that the old thinking about how college is out of reach for any but the most academically gifted students (the super geniuses) on the spectrum is just wrong.  All of us know that predictions about what our kids can and can’t do are just that—predictions, and though often well-intentioned, just as often off base.  The second is that Autistic students often struggle with things we can do something about.  The open, relatively unstructured academic and social environment can be wholly unsuited to folks who want structure, for example.

There are ways to help.  Campuses can provide explicit support structures.   The Autistic Self-Advocacy Network’s Navigating College handbook is incredibly useful.  And there are other resources out there for thinking about selecting and attending college.  Perhaps most importantly, we know that Autistic students need space and support to advocate for themselves.

The College of William and Mary is a university with reputation—and heart.  It’s a place full of serious, hard-working people.  And it is a place that will not just acknowledge, but celebrate neurodiversity.   That sticker is going up on my door.

So today is the 11th birthday of my boy— one of the many beautiful faces of Autism.   And today is the eleventh anniversary of his family’s journey to a better appreciation for the rich diversity, of challenge and opportunity, around us.

Sweetheart, I know you didn’t ask for a neurodiversity initiative for your birthday, but I’m still working on that flux capacitor.

Jess, thank you for giving me your soapbox on this special day.   You’ve inspired me, as you have so many others, to help make a difference in my corner of the world.

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For information on the Neurodiversity Working Group at the College of William and Mary, contact Warrenetta Mann (wcmann@wm.edu) or Karin Wulf (kawulf@wm.edu).

Thank you, Karin. A million times over. Thank you.

Edited to add: Two more resources that I found after a little digging are College Autism Spectrum and Ten Impressive Special College Programs For Students With Autism. Also a great book for parents helping their college bound kids – the aptly named The Parent’s Guide To College For Students On The Autism Spectrum.

18 thoughts on “change

  1. This woman is amazing and so inspirational! Thank you to all who listen and make changes. Our world is becoming a better place–one conversation at a time.

    Love you,
    Mom

  2. Dear Karin,
    On behalf of my son Aidan thank-you:) As they say, it starts with 1 person, and honey you are THAT 1 person!!
    If I was in Virginia I’d give you a big ole hug and kiss, so suffice to say here is 1 in email form!
    One love!
    Aidan’s mom.

  3. Every interest my son has makes me go through a college catalog in my mind. Maps=GIS, Ship wrecks= archeology, marine mammals=biology. This gives me real hope that my kid will reach his God given potential! Even if it is one class at a time and it taked 10 years. I was a college student with a learning disability and believe me it takes a village and it looks like Karin has created one! Saving up for W&M!

  4. This is wonderful, and left me with so much hope. Thank you Karin. Proof again, that what you are doing Jess, telling your story the way you do, it changes people.

  5. Jess, when you shout into the wind…it travels, it resonates, it inspires. Karin, first off…Happy Birthday to your boy! And second, thank you. Quite simply and sincerely…thank you.

  6. Thank you, Karin, for your dedication and hard work. Thank you, Jess, for the “spark”. This gives me hope– oodles of it…because, on my son’s IEP, for long term goals (he’s in kindy right now), my husband and I did, indeed, put “high school diploma & college”. If our son wants it, we want that OPTION available to him…and we won’t stop fighting to get him there. Thanks to the “good ones” like you, he just might get there!

  7. this was wonderful to read and i’m sharing it with my husband. you’re right, we can’t afford to lose these kids. these kids, by thinking differently, can make all the difference to our world and there are so many little things that we can do to make a big difference to them.

  8. Very inspiring! My boy is in 8th grade and the college thing seems so close, yet so far. This helps keep the focus – there is help, there are people who care, and he can succeed…this might be my mantra for the next 4+ years!!
    Thanks!

  9. Just had my son’s IEP meeting yesterday, first one he was present at as a high school freshman. He’s planning on going to college, and while I don’t think he will have it as easy as his father did (who is a bit better off on the social side of things), with things like this, I know he can do it.

    And Jess, as to what am I doing – next year I will be doing a mid-life career change, going from computer geek to school psychologist. All due to my son and his inspiration.

  10. I sit here in tears, blown away by the power of the internet to connect and inspire, to empower people change the world. Karen, happy birthday to your son! This line made me grin: “Sweetheart, I know you didn’t ask for a neurodiversity initiative for your birthday, but I’m still working on that flux capacitor.”

    Thank you, Karen AND Jess, for changing the world so that children like mine might have a shot at something so much more than the solitary, sheltered lives to which they may have once been relegated.

    • Thanks to everyone for their responses! I learn so much from this community that Jess brings together, and it’s so wonderful to be able to contribute something.

      Niksmom, being a particular kind of boy, he found a website in Sweden where they will sell you a full-scale model of the innards of the time circuits, flux capacitor etc from Back to the Future…for about 3000 euros! He told me he plans to sell lemonade for $30/ glass. : )

      Karin

  11. That’s one he$$ of a boot Jess! Thank you for giving us all the swift kick we sometimes need to find our voice to help our kids and open eyes and doors for them.

  12. Karin – I am so happy to hear about this. I live in Williamsburg and it is a great community. William & Mary is a wonderful school and it is good to know that the people behind the image are just as wonderful. I have an 11 year old kiddo and my hope is that one day he will be in college (WM would be perfect). I hope colleges and universities continue to see the gifts that these kids have and help to make them more successful. If only WJCC schools would take note.

  13. Well, this post is certainly going in my 7 year old’s College folder! 🙂 And his teachers’ tool boxes, too!

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