November 2009

Trying to Get Perspective

by Tim on November 29, 2009

These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.

I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.

It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)

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In Dreams Asleep

by Tim on November 17, 2009

I wrote in “In Dreams Awake” about a dream I had that came true not long ago. Now I wish to write about another dream I had a few weeks back. It’s rare for me to remember dreams at all, and nearly unheard of for me to remember them in this much detail. So here is a dream that has not come true, at least not yet.


To unpathed waters, undreamed shores. – William Shakespeare

Dreams are illustrations… from the book your soul is writing about you. – Marsha Norman

I dreamed Mary and I were sitting in folding metal chairs – the gray and somewhat wobbly kind you see by the hundreds in church fellowship halls and outdoor events everywhere. We looked down and grass began to appear under us. The grass became mottled by dirt – bare places in the expanding grass – and was made uneven by tree roots slowly emerging from the ground.

Around us, buildings slowly began to reveal themselves, forming the boundaries of what became an enormous quad, a great lawn also ringed and permeated by oaks and magnolias. Then a sea of chairs coalesced all throughout the quad. Soon they were filled with people – an endless variety of families it seemed – from every generation and from every walk of life you could imagine, but none of whom we knew. They formed fully into being, sitting in perfect geometric arcs around the quad like a great parabola with a stage as its focal point.

A large, square formation of neat rows of chairs filled the space between the arcs and the stage, filled with students in their navy gowns, mortarboards, and tassels. Graduation? But for whom? I realized the ceremony was already well underway. Some students were lined up on the lawn to the right of the stage, waiting for their turn to cross the stage. One student was walking away from the stairs on the left side of the stage, holding her diploma in her hand, waving it triumphantly to her family. I could finally see the stage clearly, and it was filled with the usual dignitaries – principal, administration, teachers.

I still didn’t know for what person we were there. We have numerous nieces and nephews, friends working on higher degrees, or was this the past? I didn’t have a clue.

Then I noticed something very odd. No more names were being read. The ceremony had just stopped. The middle-aged man at the podium did not call out the next name. It was like everyone was holding their breath. Instead of impatience, I could feel anticipation swelling through the formation of students. You could see heads turning throughout the crowd. Many of them craned their necks up and around; some stood up to get a better look. The crowd knew something important was about to happen – everyone, apparently, except us.

For the longest time, nothing seemed to happen. But everywhere we looked, every single person was smiling. Many had tears in their eyes. All of them radiated happiness, drinking all this in like people savoring history. Then I realized that all of those jubilant faces were now looking at us.

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[Post edited - I realized that those of you subscribed to our blog via e-mail never even saw there was a video in the version of this post that's on our site. You can go directly to the WRAL site and view it if you can't see the video here. -Tim]

As rough as it’s been lately, I needed something to inspire me. Last night on our local newscast, they did a piece on Nathan Baker. He’s a member of a local high school cross country team. And he has cerebral palsy.

His story and his inspiration helped get a good part of me out of my funk.

So, Nathan, thanks for being awesome.

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Pause

by Mary on November 10, 2009

The Flashlight family had one of those weekends, and it has carried into this week. We went “big grocery shopping” on Saturday (good thing!) and Tim mentioned a couple of times that he felt funny. I assumed it was a Man Cold (YouTube link) but is seems to have been something much unfunnier. He has spent the last 2 days trying to keep down water. We’re up to watered-down Gatorade and bouillon for him. YUM!

Funny conversation Sunday night:
Mary: (grabbing the cup on the edge of the bathtub) You want some of this Gatorade?
Tim: (answering from somewhere down inside the bowl) I think the cat may have drank out of it. Do you think it’s still OK?
Mary: NO!

The boys both have colds – a newborn having a cold is just AWESOME, y’all! Plus, since we went to Dale Jr’s 6 month appointment last week (which is probably where we all picked up the germs), and were roundly scolded for not having him already on “3 meals, plus a snack,” of solid foods, we’ve been trying to shove more food into him. And that? Has resulted in unpleasant tummy. Screaming, crying, straining, unpleasant tummy. Today I tried adding prunes to the mix, and have decided we’ll have to work up to those 3 meals plus snack.

The J-man is constantly wiping his nose with his sleeve, which means that he has a sore spot underneath his nose, and some serious cheek chappage. I wish there was some way to teach him to blow his nose, but I can’t figure it out. It’s not like he’s going to mimic me doing it. He’ll also hand us a tissue and ask for “no z” but that just gets the tiny bit under his nose, and doesn’t really help because right after we use the tissue, he swipes with this sleeve again anyway. He’s been watching WAY too much Laurie Berkner and Signing Time, but that’s about how much I can handle while carrying around the other sick baby.

And then there’s me. I’ve been OK, except getting a cold, but am being worn down by the lack of sleep, and keeping up with 2 sick kids and 1 sick husband. I now sound as though I am a 55-year-old, 40 pack-a-day smoker.

Thank goodness for Pepaw who came over on Monday, and for my friend Elly who came over on Sunday night when I thought I might have to take Tim to the ER.

We’ll be back!

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Is “Asperger’s” on the way out?

by Tim on November 5, 2009

It’s that time again when they update us on the progress of how the clinical definitions of autism may be redefined in the next version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM. (Read more about this in our The Clinical Definitions of Autism, Asperger’s, and PDD-NOS post from a while back.)

The Neurodevelopmental Disorders working group for the DSM-V (V = 5th Edition) has an interesting list of issues related to ASDs that they are trying to reach conclusions on before the 2012 target date. (Note this is an older version of the list, but it’s still a fascinating read.) To say that whatever is ultimately approved for inclusion in this manual will affect the lives of both parents of autistic children and autistic persons is a serious understatement.

There has already been a lot of commentary and some controversy about this process. It does seem, however, that the working group assigned to revise the DSM for autism have tried to be methodical. careful, and sensitive to all the issues involved. Honestly, I think they were given an almost impossible task here. We won’t really know how well they succeeded until we see the first draft.

This NY Times article describes the latest controversial issue in this process as well as some ongoing ones. This most recent one has already drawn a ton of reaction and might easily be among the most talked about when the draft is released.

The big question being discussed now is whether Asperger’s as a specific, separate diagnosis will be left out of the next DSM. ‘PDD-NOS’ may also be going away. Without the draft actually existing yet, it’s hard to really dig into the real-world meaning of this, but for whatever these are worth, here are my comments about this and some other points.

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