The View From Kalamazoo

KALAMAZOO! Less than two weeks! [cue screaming] (oops, that was me. sorry)

My cubicle is FULL of registration packets — and the pile shown is not yet complete! Boxes everywhere!

A few things:
We’re really out of dorm rooms. No, really. SRSLY.

Don’t forget to consult weather.com as you’re packing… and no matter what it says, pack layers anyway. It’s spring, it’s Michigan, and I remind you that we’ve enjoyed Congresses during which it’s both snowed and made it well past 70 degrees. (yes, during the single 5-day period. no, not kidding. SRSLY!!)

Aaaand I’m waaay past insane, at this point. Just so you know.

Public Service Announcement for medievalists: DON’T forget to register before pre-registration closes on 4/15!
http://www.wmich.edu/medieval/congress/

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

I don’t think I have to describe in detail the explosion after the 1998 article in which Andrew Wakefield published research findings indicating a causational link between MMR (measles, mumps and rubella) vaccines for children causing autism.

It appears that Andrew Wakefield falsified results in his research. It’s not particularly surprising, since the UK’s General Medical Council had issued a notice of disciplinary proceedings against Andrew Wakefield after allegations of (other) serious professional misconduct.

I’ll stop here before I start ranting about falling innoculation rates and the effect on the general population, much less all of the emotional bullshit the parents of autistic children are put through because of his bogus ‘findings’.

In which I yap and yap.

It’s up!

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.

“Anyone who is capable of getting themselves made President should, on no account, be allowed to do the job.”  — Douglas Adams