The View From Kalamazoo

The International Congress on Medieval Studies has a Twitter account:

@KzooICMS

If you’re a Twitter-using medievalist, please follow!

There’s also a designated a hashtag #Kzoo2010 for use before, on-site, and after Congress for Congress-related tweeting and micro-blogging for searching ease.

Let the tweets begin!

(Yes, it’s me tweeting in my significantly more boring official capacity.)

Interesting posts with subsequent discussion re: tenure, graduate school, and expectations over at Blogenspiel.

Post 1
Post 2

Four years ago I was asked to join seven other bloggers–parents of kids with a variety of disabilities–to blog in an organized fashion on their behalf. Educate. Advocate. Each year since I’ve continued the practice, albeit solo. This year I’ve been joined, again, by a coordinated group (a list to which I will be adding their URLs as they post):

Another Damned Medievalist
Cis Masque
Clairvoyant
SabreBabe
Sonoran_Mamma
Tamela J
Tudorpot

(eta: this is an excellent comment)

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Parenting children with disabilities is challenging on a number of levels. In the case of my family, the disabilities are (initially) invisible–mental, emotional–but no less present. I addressed some of those challenges (and the specifics of our situation) last year.

This year I want to introduce you to one of our challenges that you might not initially consider an issue: in addition to our daughter we also have a son. He is neurotypical.

Time did a piece on this awhile back (Autistic Kids: the Sibling Problem) and although Emma is PDD-NOS (atypical Autism) with other issues, the article does cover some of what we have seen.

But not everything.

Colin is a very, very bright seven-year-old. He reads everything he can get his hands on, manages video game strategy better than many adults, and picks up vocabulary like a sponge. He’s also immature for his age, not well socialized with his peers, and has anger-management issues that clearly result from the situation at home. Immaturity isn’t unusual in boys his age—although in many ways he is more mature than his sister, so it’s difficult to know where normal range ends and modeling his sibling’s behavior begins. A tendency to be awkward socially comes naturally, whether he takes after his father or I—neither of us were social butterflies. But how quick he is to anger, how what seems like a normal level of frustration will send him off-kilter, is a side effect of his environment.

It’s not easy living with Emma.

It’s not easy when you’re an adult who understands the context of her behavior and has maturity and experience to draw from when dealing with some of her most extreme outbursts. For a child it must be like living in constantly-shifting reality where the rules and outcomes are never expressed and randomly enforced… where expectations for him and for his sister need to be tailored to the child and the situation, even if we do actively try to maintain some semblance of consistency. He is as constantly under stress as his father and I, but he doesn’t have the skills to cope with it. Even so, he does his best.

As do we.

When he was an infant I had her help me as much as possible, to offer her opportunities for bonding (she loves babies, whether dolls or real). As he got older (and independent!) their relationship began changing. She runs hot and cold, and her random moods and reactions were often directed at him. She tends towards verbal and physical outbursts when her meds aren’t in her system, so the early mornings and day’s ends were particularly traumatic. And it’s only gotten worse as he’s modeled her behavior back to her and as he’s achieved levels of skill that she can’t reach, herself. Despite our breaking up countless arguments/battles, no amount of talking to her changes her behavior, and no amount of talking to him can truly make him understand that Emma going from I love you to I hate you in a matter of five minutes without any outward provocation is just Emma and not him. It’s anxiety-inducing to live with a time-bomb, and it’s depressing to be constantly belittled, insulted, and harassed (I know, because I’m a main target for her abuse, too).

So now we attempt to keep them separated.

I wake him in the morning after Em has left the house for the bus, so he doesn’t have to deal with the shrieking harpy she is when she first wakes up. When they were both in elementary school and riding the same bus, this was impossible… and it resulted in a lot of calls home last year, because starting the day off with verbal abuse and (no other way to describe it) crazy directed at you set him up for a very bad day at school.

She now takes the bus home instead of to the sitter’s house, so he doesn’t have her random moods interrupting his quiet homework time. In the evening we encourage him to engage in activities that don’t involve them playing together (since that just results in screaming arguments), like reading or playing strategy games on the computer. We spend money on devices and computers so they can entertain themselves without actions and reactions resulting in more hurt feelings and rages. We give him constant positive feedback on the areas that most vex him, we take his interests into account and try to give him as normal (what is normal, anyway?) and fulfilling and fun and educational a childhood as possible. We hope for balance. We take one or the other with us on errands so they can have alone time with both parents—so we can run the errands in something approaching peace—and I’ve taken them, individually, to visit my parents.

It’s not ideal.

But it’s never been, and it never will be: It’s our life, we do our best.

And that’s now.

Tomorrow, many tomorrows from now, my youngest child will be responsible for my oldest child. Because we do not know if she will ever live independently as an adult, nor how we’ll be defining ‘independent’. Because we won’t always be there… and yes, by that I do refer to my eventual death. So not only might my son have to help care for his father and I at the end of our lives, his sister’s welfare will become his responsibility. This will be a heavy conversation to have when he turns 18 or when he graduates from college… and when he thinks he’s found the one, whomever that is must, too, know what the future will hold.

But that’s not now.

Now is quite enough, to be frank.

And now mostly what I hear around my house is, “it’s not fair!”

No, it’s not.

And it never will be.

Four years ago I was asked to join seven other bloggers–parents of kids with a variety of disabilities–to blog in an organized fashion on their behalf.

Every year since then I’ve continued the practice, although solo.

This year I have decided to organize another parents Blog For Kids With Disabilities day (this time in October, due to a variety of unfortunate logistical kerfuffles) to spread awareness, offer advice or support for other parents, and to advocate.

The topic would be yours to decide upon (parenting, education, medical struggles – if you have stories that directly relate to the current health care reform debate that you’ve already related to your representatives, I have no doubt other parents and interested readers would like to hear them), we’d just coordinate the date of posting and include links to each others’ blogs.

I know former/potential bloggers who are concerned that they will not have a full-blown blog set up by that time, and I am happy to post your essays here, if logistics require–the more voices the better!

Please let me know if you’re interested in participating.

My archives:

September 28, 2008
September 20, 2007
(2006 post got et, I think. I’m looking for a back-up copy)
September 14,19, and 26, 2005

Whoah, I’ve never liveblogged — this will be interesting (and not just the papers – I *know* those will be interesting!!)

Weblogs and the Academy: The Scope of the Professional and Boundaries of the Personal in Open, Pseudo-Anonymous, and Anonymous Blogging (organized by Shana Worthen and myself)

Personalizing the Profession: The Value of “Academic Life” Blogs, Christina M. Fitzgerald:academic life blogs v. narrowly discipline-focused blogs. The former works to humanize academics, showing demands of personal and professional and blurred lines between academic life and personal life. Blogs can be read for insight into other types of institutions, situations, or positions to gain broader knowledge of the workings of academia. Academic life blogs can shed light on the process to graduate students beginning the process, demystifying it in the process. Reminds readers that medievalists are not only what they publish, gives voice to their work, but also to the way their work impacts their personal lives and shapes their professional experience.

Balancing the Personal and the Professional in Academic Blogging, Kristen M. Burkholder: reasons for choice to pseudononymously blog and the ramifications of that decision. blogging under own name involves a certain circumspect treatment of blog contents, given the potential negative ramifications of name googling by an institution during a tenure process or job search. activities or opinions outside of academic life communicated in connection to a blogger’s real identity can still shadow that individual and color the opinions of readers. Medievalists, as a fairly ‘rare bird’ in academia, are easy to possibly ferret out based on clues to identity, so a pseudonym alone can’t be considered protection of identity. Blogging under a real name, however, allows the blogger to take credit for the blogging (ex: showing engagement with discipline). Can be a way to establish professional relationships and engage in discipline-based discourse. Blogs used as teaching tools can, obviously, not function pseudonymously if that blog is revealed to students in the course of utilizing it in pedagogy. Closed course blogs can’t be used as an ongoing tool, nor can they engage the scholarly community as a whole. The size of potential audience requires care to balance casual discussion of academic topics (like deconstructing conference sessions) with making actionable statements, and the positive visibility of a scholar as a representative of a discipline or university has another side of the coin if discretion is not applied to the blog topically or in the treatment of the topic.

“A Blogger by Any Other Name”: Pseudonymous Blogging and the Creation of a Legitimate Academic Voice, Julie A. Hofmann: academic blogging has changed significantly since 2002. Initially bloggers were discipline-focused and written primarily by males, whereas blogging by medievalists has exploded in the range of voices and the increase in academic life blogs. In general, the more personal the blog, the more likely the author is female, the blog pseudononymous, and the voice collegial/casual — but increasingly junior faculty are joined by senior faculty and graduate students and independent scholars in bloggingl. Despite the Ivan Tribble series, this expansion in types of bloggers shows that blogging and bloggers aren’t the scary things naysayers feared. Professional voice appears side by side with this casual, personal voice, thus presenting blogger as scholar and serving the discipline and community via information exchange and a space for discourse. Many (although not all) blogging with an academic voice post under their real identity, whether individual or group-constructed. The professional voice is carefully constructed, but the collegial voice is equally as carefully constructed and the pseudononymous blogger that uses it is not, as often accused, trying to hide something nor necessarily over-personal or under-professional. They are not *less* academic – they are *differently* academic. Most academics do not find jobs at research universities, so to stress the purely-professionally-voiced academic blog presents an image of the discipline that doesn’t match reality. And medievalists are often isolated on campuses — collegiality creates community. Questions: why are most academic life blogs written by females? why do males feel more comfortable blogging under their own names? and, if blogs are clearly academic and legitimate, why do so many academic life bloggers still feel compelled to blog pseudononymously?

My Blog Is Not Myself: Negotiating Identity in the Academic Blogosphere, Janice Liedel: Psychologists working on blogs have shown that the elaborate creation of online identity is actually rare – in reality, personal identity is grafted onto avatars and communication. In fact, the internet pulls some to reveal more of the personal than they would otherwise, and that has in part helped form the list of negatives leveled at bloggers: recklessness, senior colleagues can adversely impact careers, posts can create animosity in departments, popularity can create a form of professional jealousy. Even so, the internet identity is a construction (whether publicly blogging or no) however much it’s informed by the personality of the blogger. And the blogger must be cognizant of that identity constructed — a vitriol-fueled personal, for example, it surely not a good choice nor positive contribution to professional goals when bridges are burned with senior faculty and graduate students, alike. Although nothing disappears on the internet, choices can be reconsidered and personas remade to better serve the personal and professional goals of the blogger.

Shana Worthen and I have co-organized the series of sessions at the International Congress on Medieval Studies on ‘Weblogs and the Academy’ for the past three years.

2006 – Weblogs and the Academy: Internet Presence and Professional Discourse among Medievalists (A Roundtable)

2007 – Weblogs and the Academy: Pedagogy, Professionalism, and Technical Practices (A Roundtable)

2008 – Weblogs and the Academy: Professional and Community Outreach through Internet Presence

And this, our final year:

2009 – Weblogs and the Academy: The Scope of the Professional and Boundaries of the Personal in Open, Pseudo-Anonymous, and Anonymous Blogging — Please join us Saturday, May 9, at 3:30 p.m. in Bernhard 213!

We’ve enjoyed organizing the sessions, and they’ve been very good (if I do say so myself – and this year looks excellent, too!) To our delight they’ve resulted in spirited discussion both at the conference and online, and they’ve helped in the creation of a real and lively community of medievalist bloggers. We’ve been fortunate in the wide and outstanding variety of scholars who have come aboard, and in the generous support the medievalist blogging community has given us in the form of suggestions, ideas, and kudos – many, many thanks to all!

I’m (inordinately!) pleased that academic blogging in our discipline is still going full-force, that sessions on blogging have become (almost) commonplace at other academic conferences, and that our sessions have helped shine a spotlight on the bloggers who have spoken in them and on the greater world of medievalist bloggers.

But wait – I said final, didn’t I?

Shana and I have decided to exit, stage left. The topic is hardly exhausted, despite our presenting speakers on some of the biggest issues that either we identified or that grew out of previous sessions, but we’re bowing out while we’re ahead — and that means there is an opening for any of you to continue the show. I can’t think of any major issues we’ve missed – but I suspect you may have ideas (that is, if the sessions are still of interest and still needed – and that’s a question only you, collectively, can answer), and we’re happy to support you in organizing these sorts of sessions at Kalamazoo in the future.

But ya gotta let us know.

So – what do you think?

Planning for the blogger meet-up at the International Congress on Medieval Studies is under way. Don’t forget to pencil-in Session 546:
Weblogs and the Academy: The Scope of the Professional and Boundaries of the Personal in Open, Pseudo-Anonymous, and Anonymous Blogging

• Personalizing the Profession: The Value of “Academic Life” Blogs, Christina M. Fitzgerald, Univ. of Toledo
• Balancing the Personal and the Professional in Academic Blogging, Kristen M. Burkholder, Oklahoma State Univ.
• “A Blogger by Any Other Name”: Pseudonymous Blogging and the Creation of a Legitimate Academic Voice, Julie A. Hofmann, Shenandoah Univ.
• My Blog Is Not Myself: Negotiating Identity in the Academic Blogosphere, Janice Liedl, Laurentian Univ.

(Yes, that was shameless pimping.)

*More pimping: Peter over at medievalists.net has done a ton of work on the ‘Kalamazoo’ section, so go give him kudos. (even if he has plans to put me and a camera in the same room… I’m trying not to hold it against him)

*Reminder: all 240 glorious pages of The omg!uber!Program have been online since Feb. 1.

Sorry, other than the above I have nothing else academic-y to add.  I have an IEP meeting to construct many varied and interesting weapons for — Momzilla has to stomp Tokyo again. (I really hope the new Prez will do something about No Administrator Left Behind, it’s screwed special ed thirteen ways from Sunday)

(An aside for thems that know me: If you plan/need to track my whereabouts at the conference drop me a line at the university email (elisabeth dot carnell at wmich dot edu) and I’ll add you to the google calendar so you can stalk me let me know when and where I’m drinking in the evenings! :P)

See y’all in 5 weeks (5! weeks! aaaagh!)!
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Wait!  There is this sweet bit of awesome:  Breathe Easy Benefit

Breathe Easy Trailer from World's Fair on Vimeo.

Go! Look! See!
Srsly!

Three Rivers Land Trust

More:
Great Rivers Land Trust
Natural land Institute
Little Traverse Conservancy and Raisin Valley Land Trust

Three years ago, seven other parents/bloggers and I banded together for a Blogging For Kids With Disabilities Day (my participation: part I, II, and III). Since then I’ve considered education (not only Emma’s, but everyone who encounters Emma, and anyone else who will listen) part of my job as a parent. Invisible disabilities are difficult to manage for both the parents and the child – but also for strangers, as these disabilities are lacking the social visual cues that allow people to avoid being assholes around kids in wheelchairs (should they so choose), for example. And the stigma of mental health disabilities, not to mention the preponderance of misconceptions, misinformation, and outright lies, means many who have diagnoses won’t get treatment and many who need diagnoses will be afraid to ask for evaluation. Adults and children alike. Many other adults who have their children evaluated, themselves discover their own personal histories beg for evaluation. A good friend of mine, a professor at a large east coast university, was diagnosed after his son had been – so much of his life made sense after that diagnosis.

This past week was ADHD Awareness Week. And so – I blog.

First: I don’t care what you “believe”. This is a medical diagnosis, not an effing religious principle. If you can’t manage to get your head around that then you might as well stop reading. Really. Stop now — nothing I say will stop you from giving these kids and their parents shitty looks, so save us all the trouble, ok?

Second: Last year I covered many popular myths about ADHD, and it might be a good place to start, if you’re still reading and don’t know much about ADHD or its history.

This year my post is a little different, but no less necessary.

My daughter, Emma, was born on December 26, 1996 — it was one of the happiest days of my life.

Emma has continued to bring happiness to my life, but it was also clear from a very young age that Emma was different from other children. The differences were subtle, however, and often dismissed by people who didn’t spend as much time around her as I did. Whatever deep-seated impulse leads parents to believe everything about their child is perfect, I discovered (in my case, at least), it is easily overpowered by the gut instinct that Something Is Not Right and the drive to get help, no matter how many mountains I had to shout from.

She displayed cognitive… oddities. Things that boggled me – in addition to exhibiting delayed speech skills (requiring special assistance, which I was able to eventually have tested for and arranged) she clearly had processing issues, for lack of a clearer description. I could see it on her face – she wasn’t following speech, at least not following it the way I could see other children following it. It was also clear to me her near-manic activity level was Not Normal. She was diagnosed with Attention Deficit and Hyperactivity Disorder half-way through kindergarten (I had talked to her teacher up front about my suspicions and asked for her professional feedback – once she said ‘yeah, you might want to get her looked at’, it was a go). The first time she saw a psychologist she spent the hour gathering toys and then methodically moving them from corner to corner in the psychologist’s office. En masse. Over and over and over. He showed me a chart, showed me the normal range on the chart. He took his pencil and pointed to the spot Emma had tested at (based on myself and the teacher answering literally hundreds of questions). The pencil point sat on the table about two inches from the edge of the chart.

I moved to begin treatment immediately – so much time, learning time, she’d already lost. I had to repeatedly request to get the school psychologist to meet with me, and I arranged for an IEP (indivualized educational plan). I eventually fought to have her repeat 1st grade because I didn’t think she had enough time with the foundational material to continue on to 2nd grade, and she surely would have been utterly lost from that point on. And I wasn’t going to allow that to happen.

Our first med was initially helpful for the hyperactivity, but not for the attention issues. Eventually it was clear that, in addition to its shortcomings in controlling the symptoms enough for her to do what she wanted and needed to do, it was adversely affecting her mood. She was growing more and more erratic and aggressive, flying into frequent rages (and she had been, other than her exquisite frustration when she just wanted to make it through an activity and couldn’t, a happy child). That was the beginning of near-daily doses of verbal abuse for me – I’m her main emotional support [so I’m safe – she knows I’ll not leave], I’m the setter of limits, so I’m her main target for frustration and ire). The problem with stimulant medication, however, is that it almost always results in weight loss – and our very little girl was already just at the 5th percentile on the growth chart – so she fell off, and we would struggle to get her to eat for many years. It’s scary having an underweight child – one bout of the flu would have us in the hospital having her re-hydrated via IV because there was simply no stores to draw from.

We tried a second, which was a vast improvement. It was, however, difficult to manage – she metabolizes medication at twice the normal speed. This means a 4-hour med lasts no longer than 2 hours. An 8-hour ‘all-day’ med lasts til lunch. It also means that fever control for her is an Olympic sport – I have to go back and forth between Tylenol and Advil. And I have to make sure the fever doesn’t start to go up or I have to switch from oral medication to a suppository – she projectile vomits when her fever spikes (while this is difficult and upsetting, I will express intense relief that I have been dealing with vomiting and not febrile seizures – they’re frightening). I spent many, many hours holding a weak, endlessly retching child on my chest, swaddled in cold, wet towels, trying to get her temp down enough to give her Tylenol in the hopes that it would stay down (and then doing it again when it wore off before I could safely give her more – it was an emergency room visit that got me information about Feverall suppositories, over-the-counter gems that they are).

So the number of mg per day she had to take, orally, was frightening. I have never happy-danced quite like I did the day Daytrana patches finally made it through clinical testing and hit the market: same stimulant as she had been taking, but absorbed through the skin so she couldn’t power through it.

Still, for all it did (handling most of the hyperactivity, and helping somewhat with the attention) it didn’t handle some other behavioral issues popping up and growing more troublesome, nor the other cognitive issues. Emma appears to have a very limited concept of self and theory of mind. Her ability to appropriately empathize and infer intentionality in others is extremely limited. Although she is friendly and chatty she also tends to irrationally single out certain individuals for enmity. Disruptions in her schedule are major — some of the worst times we have are when she has a substitute teacher. She obsesses and fixates on things like tornadoes and hurricanes and spiders and alternately worries about them and/or wishes she could see one.

On the recommendation of her pediatrician she was tested for Fragile X, but that was negative. After seeing a new pediatrician last fall, after her other passed away, we had comprehensive genetic testing (and a full battery of neuro-psychological testing) done. The neuro-psych testing got us another set of initials – PDD (pervasive developmental disorder) and confirmation that her IQ is not in normal range – but it’s also not as low as what had been termed ‘retarded’ and so we’re caught between functional and clearly disabled, not knowing what I can ask for and arrange for her). The results of the genetic testing were…well, they were the classic good news/bad news situation.

The good news was that I wasn’t nuts — Emma was diagnosed with partial trisomy of 16 p. As the letter from the geneticist put it, “Chromosome high definition of oligonucleotide array revealed a small duplication of chromosome 16p.” The CGH showed “gain of four clones at 16p13.3: RP11-243K18, RP11-334D3, RP11-358F6, CTD-2608C14.

The bad news is that CGH testing is very new, and Emma may be the first child ever diagnosed with this specific set of chromosome 16p duplications. As the geneticist put it, “Given the relatively new nature of this testing, we were unable to find reports of children with the same size duplication as Emma.” There are certainly other children with 16p duplications, but they tend to have much larger duplicated material and also tend to suffer much more pronounced physical and cognitive problems. So, she’s her own case study. And she can’t be ‘fixed’ – that’s always the hope, that whatever is wrong can be corrected. No. Never. And it’s likely the result of just a random mutation (not that this keeps me from continuing to blame myself, but sometimes, in the middle of the night, I need to blame someone…)

So the result is both something and nothing. Nothing has changed, but having it on paper has allowed me to have the school system switch her from SLD (specialized learning disability) to OHI (other health impairment) and this has opened up a bit more in the way of services for her. Working with the pediatrician we’ve cut back on the stimulant and added Risperdal (an anti-schizophrenia medication), which helps to control many of her ‘initials’ (the OCD [obsessive-compulsive disorder] and ODD [oppositional defiant disorder], specifically) that have contributed so heavily to her attention issues. Also, it encourages eating, so that helps balance the affects of the stimulant medication (so she puts food in her body, feeding the brain, and she’s managed to get back on the growth chart – and has enough fat on her body, now, to have begun puberty.)

Yes, puberty. And puberty is as effing scary for me as it gets. The pediatrician has given me the information that he gives to all of his parents of ‘impaired girls’ – once her menses have begun and are regular he will, if we wish, refer us to a gynecologist to arrange for long-term birth control. Because she’s impaired. And because she’s impaired, she’s at very high risk of having Very Bad Things happen to her — and because those Very Bad Things are bad enough without a pregnancy as a result (particularly, in her case, since she’d be very likely to pass on her trisomy – and the one thing she’s always stated wanting to be, when she grew up, is a mom…this is not a discussion with her I’m looking forward to having).

Because I can’t protect her all the time. I tell you, honestly — I gave birth twice without epidural, I’ve been burnt, I’ve had a terrible back injury that required surgery – and there is no greater pain I have experienced than that moment, listening to the doctor… imagining all of those Very Bad Things. I was certain, certain, my heart had stopped.

So… each day is a new one, and who knows what it brings. Who knows what her IQ will ultimately be, whether she’ll ever be able to even partly catch up to her neuro-typical peers and consider college or a trade, whether she’ll be able to live independently as an adult. We just don’t know – and that’s what keeps me up at night.

I write this, not because I want you to think anything special or different about me (because I’ve just been doing my job), but when you see and talk to that kid next door, at the grocery store, or in your kid’s class who clearly has something going on (whether it’s ADHD, autism, Asperger’s syndrome, or a myriad of other possibilities)… think about Emma. Treat them with kindness. Look at the parents with compassion – however stressed, however obviously overwhelmed they appear at that moment, they are doing the best they can. Believe me – if there were some way to make Emma’s chromosomes normal, if I had to step in front of a speeding bus to guarantee her a real stab at a normal life I would, in a heartbeat. So would these other parents. Accuse them, us, of a lot of things, but never accuse them of not trying their gods-damned best.

And that’s the end of this bully pulpit session.

Weblogs and the Academy: The Scope of the Professional and Boundaries of the Personal in Open, Pseudo-Anonymous, and Anonymous Blogging is coming together nicely.