Syndication!

I want to let you all know that my "Welcome Table" post from Girl w/Pen has now been syndicated on BlogHer.  As of today, it's first in line on their feminism line-up, but here's the individual link, too. 

I got this cool graphic and everything!  BlogHer contacted me to ask about syndicating it--who knows how they came upon it, but I thought that was very cool.  As you'll remember, the post generated loads of thoughtful commentary here, and I'm interested in seeing if readers over in the BlogHer community have things to say about it.

Super Ninja Writing Force is super famous!

I've written here before, and in the acknowledgments pages of Girl Zines, about the importance of my writing group.  Well, thanks to Claire Curtis, we've now jumped to a level of academic fame.  She's published an article about us in the most widely read academic publication, The Chronicle of Higher Education.  Go read it!  She'll tell you how to create a writing group that works.

Two unconnected disability conversations today

A quick post today related to How Things Are Screwed Up Out There in the World.

Today I had two different conversations which I myself didn't initiate (the point being that I wasn't out there scrounging around looking for things being screwed up).  In one of them, a woman told me about her three year old son who has spina bifida.  She told me that when they discovered, during her pregnancy, that her son had spina bifida, the doctor told her that they should terminate the pregnancy because the baby would never be able to do x, y, and z.  It almost doesn't matter what x, y, and z are, because this story ends as many of these stories do:  he's three and he's already doing x, y, and z.

She also said that she and her partner did a tour of preschools that was something like ours.  One school actually said to them, "We don't take people like that."

In the second conversation, a mom of a child with Down syndrome told me about a family member--a doctor--who said that she thought it was terrible that the media leads parents of kids with Down syndrome to have "false hopes."  At first I was just furious, but I toned it down a bit and was able to email this response:

What doctors in 1970 would have called "false hope" is just mundane daily reality in 2011.  Part of what has made it a mundane daily reality for Maybelle is the fact that parents in the 1970s decided to go ahead and have "false hope" and not institutionalize their beloved children.  And lo and behold:  the doctors were completely, completely wrong.

Your therapists will be far better medical resources for you than many doctors.  That's what I've found.  I've also found that it's been great fun for me to tap into my activist spirit.  I veer between the excitement of seeing how much better the world is today, and outrage at the continued block-headedness of many folks (and I'm going to trust that this family member can be re-educated as she sees your child bursting through all her low expectations).

Your child is going to blow your mind.  You're going to have high expectations, and this person's STILL going to exceed them.  I say have emphatic, passionate, exuberant hope!

So those are the things going on out there in the world.

Welcome table over at Girl w/Pen

I wanted to alert readers to the fact that I've (finally!) put a new post up at Girl w/Pen, a post about community.  I know that a number of the people reading the blog these days are moms of kids with disabilities, and I'd certainly be interested in your thoughts on that post.

Go on the bike!

Maybelle has been a person who's ridden a bike for a long time. This picture was taken in October 2009, when she was finally large and strong enough to be allowed to ride in a bike seat.  You'll notice that she looks a bit terrified--and, indeed, for a while that seemed to be her experience on the bike:  "What the hell do these people think they're doing?"

Today Claire* took a long-overdue picture of Maybelle and me on the bike.  Maybelle is now significantly larger, stronger, and pushier, and she loves biking.  She will often demand, "Go bike!", and these days will occasionally go so far as to say "Go on the bike!"  The weather is consistently springlike in Charleston, so for the last month or so we've been biking a lot--every weekend we go on at least one or two extended biking expeditions.  Maybelle generally reports on the experience, noting when we go and stop, and sometimes pointing at joggers and saying, "Run run run!"  She's also working on learning to ring the bike bell (which she calls "ding ding!").

It does occur to me, comparing these two photos, that the older member of the biking duo seems to be really having a good time.


*Please follow this link and check out Claire's new blog.  Currently I seem to be the only reader.

Bad feminist parenting

I saw Taylor this weekend and was telling her about Maybelle's love for "All the Single Ladies" and her attempts to dance along. Taylor requested a video, so here it is.

Auras

Since this blog has a broad and diverse readership, I often find myself thinking, "Is this something okay to write about on the blog?  Should I write about therapy?  Should I write about my reflections on what happened in the classroom?"  I wondered about that as I considered writing today's post:  is it okay to write about auras?  Then I figured that most folks reading this blog know that I had brain surgery a year ago, and many of you were deeply disturbed by the video of Biffle removing my staples, so really, auras are mild by comparison.

Auras are a pre-seizure phenomenon, and they're part of my life now.  My neuro-oncologist informed me that for brain tumor patients, the question is how to make their seizures manageable--"Not," he stressed, "whether you'll have seizures, because if you've had brain surgery, you'll have seizures."  The very good news for me is that I haven't had an unprompted seizure since Dec. 24, 2009, because I'm on effective medication.  But I do have auras, a few a month. 

Most often the auras happen just as I'm falling asleep at night, but our recent fever 'n' ague experience temporarily changed things.  Because I had 24 hours of not keeping any food (or even water) in my system, I also didn't have the normal amount of medication circulating in my bloodstream.  This means that the auras became a bit more frequent, and they happened occasionally during the day, when I was conscious enough to try to observe them.

The other morning I had one while Biffle was on the scene, which almost never happens.  So I talked to him about it, both to track my own mental state and to try to describe it. 

"I feel an aura coming on," I told him.  "Yep, it's definitely an aura.  It's completely unambiguous that one is happening, but I don't know how to describe the experience, how to tell you that I know I'm having an aura.  It's like I'm not fully in this moment, like I've separated from what's happening."

I looked at him.  His eyes were wide with heroically-suppressed Alison-seizure PTSD.  I asked, in complete seriousness, "Am I coherent, or am I speaking in metaphor?"

"You're making sense," he said.

At that point the aura started fading, and I felt the exhaustion and nausea that follow. 

I used to experience a weird smell as an aura was happening, and that's very common, but that doesn't happen anymore.  I find it almost impossible to describe the very distinct feeling that characterizes an aura, but I think my last question to Biffle gets at it as well as anything:  I truly didn't know if I was speaking normal language or if I was somehow speaking in metaphor.  What would it mean to be speaking in metaphor?  I'm happy to hear that I was coherent throughout the entire aura, and I'll continue trying to describe this interesting new mental phenomenon in my life.

Ma and Pa Ingalls

Somewhere in the Little House on the Prairie series, Laura Ingalls Wilder writes about a terrible time when the whole family, including Ma and Pa, were struck with some severe pioneer fever and were laid out in bed.  Ma and Pa couldn't get up to take care of the girls, draw water from the well, or meet the needs of Jack the brindled bulldog, and it took some kind Indians* to save them from certain doom.

I've thought about this quite a bit yesterday and today, as Biffle and I have become Ma and Pa Ingalls. Maybelle Ingalls is in perfectly good health, having gotten through her stomach flu by the end of the day on Tuesday, but by the time she'd emerged rosy-cheeked and energetic, she'd communicated the disease to both her parents.  We've been taking turns on who gets to sleep/vomit and who is trying hold their heads up and take care of Maybelle.  It's been tricky.  Benya, playing the role of Jack the brindled bulldog, has been quite anxious.

Biffle and I are both emerging from the worst of the illness--we're both able to keep down both water and Gatorade today!--but yesterday was pretty ugly.  For instance, yesterday morning before I realized how sick I was, I made the stupid decision to take Maybelle on a walk to the park.  Once we got to the park, I sat in the grass while Maybelle and Benya roamed around.  I realized then that getting back up onto my feet and getting us all home was not going to be an easy task.  When we were halfway home, Maybelle fell out of the wagon, bumped her head, and wanted to be carried.  I could pick her up, but I couldn't hold her and walk--it was just too much.  So I started wondering if maybe some kind stranger driving by would be moved to stop and help.  I was thinking, "Which people programmed into my cell phone are not currently teaching class and could come and get us?  Is there a way I could strap Benya to the wagon so that she could pull me and Maybelle home?"

Fortunately, we did make it home, and come to think of it, that's the least ugly of the stories I could have told you.  So I'll leave it at that.

We're better today.  I doubt we're going to need any rescuers, and it's possible that we'll make it through tomorrow with less than the sixteen hour of sleep we've been requiring.  But if anyone has been trying to get in touch with me to no avail, this is why.


*Biffle has pointed out to me that it wasn't Indians but some other white pioneers who saved them--I don't think there's much love for the Indians in the Little House books--but in my fever-addled mind they're Indians.