Sunday, October 24, 2010

Pervasive Hopeless Syndrome-Not Otherwise Specified

On Saturday I heard Temple Grandin speak at the New York Chapter of the National Autism Association conference. Grandin is an impressive speaker. She stood at a podium in a packed school gymnasium for more than two hours offering advice and inspiration to parents and grandparents and teachers who were looking for answers. She was wearing her trademark Western shirt, one with elaborate embroidery across the yoke, and kept the audience mesmerized with stories of cattle and ranchers, autism and learning, brain anomalies and neurological plasticity. She attributed her own formidable public speaking skills to years of experience and practice, not to some innate talent or gift.

I'd gone to Grandin's talk less for answers than for a strong dose of hope. Two shots of hope, straight up, with a chaser of muted ambition.

Last week we had the sweet girl's parent-teacher conference. I had been looking forward to the parent-teacher conference. After all, I'd seen the head teacher the week before and she had been raving about how wonderfully Sweet M has been doing -- how she's enjoying the reading for English class (a book about two boys with disabilities who team up to support each other) and about what an amazing time she'd had on the overnight field trip.

But as soon as we walked into the classroom, I could feel something wasn't right. If we were about to get a terminal diagnosis with a one-month life expectancy the affect in the room would not have been more grave.

The homeroom teacher started off by saying that Sweet M is so organized, hardworking, and focused on succeeding with her studies. That she is so eager to please -- such a great student. That in reading that she has great decoding and fluency skills -- better than some of her classmates. And that she is so far ahead in terms of her organizational skills that she's able to get herself packed up at the end of the day and get started on her homework while she is still at school.

The way that this information was conveyed -- rote and joyless without any details -- I could feel myself waiting for the "but"-- for the sucker punch. It came quickly.

The trouble is, said the head teacher, that when she's doing her homework she asks them for homework help.

And that's a problem because?

Because it's a busy, hectic time since we have to help the other kids get their backpacks ready and make sure they have their homework.

That's understandable. So is the problem how she's asking? Is she inappropriate . . . insistent and demanding?

No, when we tell her that she has to wait she is okay with that, but she is anxious.

So what does the anxiety look like?

Well, she jiggles her leg and her body gets tense.

Yes, we see her jiggle her leg when she's concentrating at home. Is there a problem with her jiggling her leg?

Well, she's anxious. And we'd like her to be more independent with her homework.

This is the part where, if I were in a cartoon, the air bubble over my head would read "WTF?" Let me get this straight: she is organized, ready to go, working on her homework, asking you questions, compliant when you are unavailable, and that is a problem? The other kids can't get their backpacks organized to go home, but you need Sweet M to be more independent? WTF?

So what was it they were saying? She's too much work? We can't figure out what to do? She makes us feel like we're failing?

We like to team build with the school. We like to coordinate our efforts, so we don't always say what we are thinking. But really, WTF?

At the end of the conference, the assistant teacher who had sat throughout with arms folded across her chest and smirked her way through the conference said to the head teacher, "Phew, only two more [parent conferences] to go." While we were in the room. Standing right there. She said this when we were right there.

The next day I spoke with the principal. She told me that the teachers had already told her that the conference had not gone well. Well, they got that right. We can definitely agree about that, which is a place to start.

So what were these educators trying (and failing) to communicate to us with all of this gravitas and hand wringing and the mysterious but incongruent claim that they want our girl to be more "independent"?

The principal said that apparently Sweet M isn't understanding what is going on in class. After five minutes she is, in their words, lost -- completely spaced out. Daydreaming. In another world. She doesn't understand what is going on in the class discussion. And she doesn't look like she's paying attention.

In other words, she has limited auditory and linguistic attention. This is not late-breaking news in the Vox household, so why the gravitas? Why no problem solving? Why no strategies from the reading specialist? Why no ideas for interventions? After years, nearly five years of writing this blog and dealing with these educators, I am so weary of the long faces and hand wringing, and the looks of pity that are sometimes peppered with glances of contempt when one is seen as the parent in denial -- the person pathetically grasping at unrealistic hopes for their child's future.

I have grown incredibly weary of Pervasive Hopelessness Syndrome-Not Otherwise Specified.

Unlike PDD-NOS, very little is known about Pervasive Hopelessness Syndrome, other than that it is highly contagious. Although there is thought to be a genetic basis for PHS-NOS as there is a frequent co-morbidity of depressive disorders, most cases of PHS seem to be brought on environmental factors. For those with a genetic risk, for example, with first degree relatives with a history of depression, exposure to educators who have thrown up their hands can be particularly dangerous. The onset of the condition can be sudden, but there are antidotes available, including:
  • inspiration from autism activists like Temple Grandin, Donna Williams, Valerie Paradiz, or Daniel Tammet.
  • hanging out, online or in-person, with parents of kids on the spectrum who haven't given up hope. Here the list is awfully long, so I won't list them all. If you've been reading this blog, you know who I've been reading over the years.
  • memoirs by the really pioneering parents of kids on the spectrum, like the late Clara Claiborne Park or Grandin's mother, Eustacia Cutler.
  • one's own experience -- knowing that with skilled instruction and interventions and loads of patience one's child does grow and change and learn and develop.
But this last antidote can be in short supply. These experiences take time to develop.
It's easy to forget that five years back, back in November 2005 when I started this blog, that the reading specialists at M's school had told us that she was not learning to read, and that they did not expect that she would.

So last weekend, reeling from the debacle of the parent-teacher conference -- I went to see Temple Grandin and got one serious dose of hope. For the moment I am immunized against this most recent contagion of PHS-NOS. Now I have only to figure out how to stop the contagion at her school — how to get this posse of teachers to rally around my girl instead of circling their wagons and leaving her to the elements.


MyTruth said...

This is what happens when a person has a diagnosis: everything, EVERYTHING is viewed through the lens of the Dx.

Liz Ditz said...

It's all about blaming the child, isn't it?

MothersVox said...

It really is, Liz. No matter what she does, no matter how hard she works, no matter how far she comes, it doesn't really seem to matter. Where we see amazing progress -- and a long way to go -- what do they see? Could it actually be that they just see too much work? I find it hard to believe they actually see her as just too much work. But then what is it? Just too complicated? Just too frustrating? They only have 6 kids per adult -- how hard could it be?

And, yes, it's all about the label, the Dx, and so seldom about the kid.

Paulene Angela said...

I always enjoy reading your exquisitely written posts and this time quickly found myself nodding all the way through, like one of those plastic Dachshund dogs found in the back of cars.

Good grief, the teachers should be jumping with joy, celebrating having such an amazing student, Sweet P. in their class, the progress she has made, why on earth are they looking for negative crap.

You could always recommend they read “There are no shortcuts” by Rafe Esquith, Winner of the American Teacher Award, perhaps they would find their missing dose of inspiration.

Best Wishes,

Hopeful parent and also a big fan of Temple Grandin

Brenda Rothman (Mama Be Good) said...

Do you think it's because they don't know what to do? That they've tried all their strategies and tips and skills and ... and they're stuck. They surely wouldn't admit it. And it's easier to blame her. Or maybe ... they're in the wrong job?

It's too bad they're making that your problem.


MothersVox said...

Hi Paulene, I love the image of your head-nodding! Thanks for the kind words about the writing! It's reassuring because my posts are usually longer than what is recommended for blog writing. I'm stuck in the 19th century essay form . . . And I will look at the book you've recommended. I think these teachers are actually pretty good as teachers go (well, maybe the eye-rolling one isn't so great).

But as Brenda says -- thanks Brenda -- they have probably pulled out everything in their bag of tricks and not gotten the results that they'd hoped for. They have probably tried one thing after another, not giving anything enough time to be effective.

I'd be the first to admit that M is not the easiest. Not even close. But she's also not the hardest kid to work with.

I know they will never meet anyone who is more hardworking than M, because I haven't and I'm about twice as old as they are. She just applies herself -- she has transmuted perseveration into perserverance. She shows up and works hard. And she just expects the adults around her to do the same.

Now how to figure out how to get them to do that . . .

Unknown said...

Hello there!

I am writing to you on behalf of Tony Lyons and his book, 1,001 Tips for the Parents of Autistic Girls: Everything You Need to Know About Diagnosis, Doctors, Schools, Taxes, Vacation, Treatment, Food, and More. 1,001 Tips guides parents through what to do from when they first suspect their daughter may have autism, to coping with the first diagnosis, to following up with comprehensive evaluation, continuing education, and treatment. And Tony wrote 1,001 Tips with the help of bloggers like you!

Over the past few weeks, I have spent a great deal of time getting to know the blog landscape of the autism community and I absolutely love Autism's Edges because it's smart, funny, and touches my heart! I loved reading about “Sweet M” and her Pokemon date with Hank. You should write a memoir!

I would like to invite you to be part of our upcoming blog tour about the book. As a mother of a daughter with autism, your input is very valuable because of the fewer numbers of girls on the spectrum. The sky's the limit as to the content of your post. You can select a chapter or section to focus on, choose a few favorite tips, fill in the blanks, etc. I'd be glad to set up an interview with Tony; you can submit questions to me that I forward to him. It's really up to you!

I can send you a free electronic copy of the book right away as well as a hard copy to thank you for being part of the tour. Some bloggers choose to offer the book as a giveaway to their readers and I think that's a great idea!

I would be thrilled if Autism's Edges were included in our upcoming blog tour and I'm here to answer any questions you may have. Hope to hear from you soon!

Thank you,
Kay Albers

MothersVox said...

Hi Kay, Happy to have a look at the book and potentially write a post as part of the blog tour. Please provide an email address where I can send you delivery information. My gmail address is mothersvox. Looking forward.

d. said...

"I have grown incredibly weary of Pervasive Hopelessness Syndrome-Not Otherwise Specified."
Yes - yes - yes. Tell me about it. I'm still going through the gambit of my psyche tricking me into some sort of perspective where I seem to think that maybe she is going to be allright, maybe she's just fine. And then, the PHS-NOS kicks in and I'm brought back down to a different reality of accepting that everything isn't normal at all. How long did it take you to accept the fine-lined-picture of your daughter's disorder? Do you ever really and truly accept it? Does it ever become normal, and do you ever stop trying to convince yourself that maybe nothing's wrong?

MothersVox said...

Hi Daleth, I'm with you on all counts. Somedays, everything seems sort of normal-ish. And other days, not at all. The challenge with edgy cases like my dear girl's (and maybe yours) is that she just *looks* so typical so much of the time. Until you see her looking not so typical. I've accepted and I would say embraced the fact that she's not neurotypical -- long, long ago -- but the hard parts for me are dealing with eruptions from other folks who still expect that she's typical and that she somehow ought to be. I'll go visit your site soon.

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