Monday, November 08, 2010

What I did on summer vacation

In the middle of a week during the summer, A. and I dropped E. and Z. at the grandparents' and headed one state over to an autism conference.  J. came along with us, mostly because he had no choice.

For two days, we had a chance to listen to some amazing experts in the field of autism.  This was for us, in many ways, our music festival stocked with revered celebrities.  We had watched and/or read presentations by all of the speakers who would be there, but we wanted to see them in person anyway.  Going into the event, we were both excited for the day with Tony Attwood and Temple Grandin.

Since J. was with us, I spent a large part of several sessions outside of the auditorium.  Whenever he started fussing, I headed to the door.  If he wasn't too worked up, I discovered that I could still hear the presenter while sitting in the chairs just outside the doors.  When that would fail, we would walk around the hotel lobby.  We got to know some of the vendors pretty well.  A. took him for one session each day, so I had some uninterrupted time.  And we also received a booklet with many of the slides from the presentations, so I was able to fill in the gaps.

We purchased a few books and a kit, although we haven't done nearly as much with them as I would like.  (Everything's getting pushed to another time.  Lots of "once the baby's sleeping better."  Which still hasn't happened.)  But we walked away with a lot of good material and high spirits. 

A. and I also got to eat out a couple times and stroll around a shopping center (with the all-important stop at the Lego Store).  Sure we had J. with us, but he was mostly content to hang out with us.

I had three interactions with presenters which made the whole trip worthwhile.  Each one deserves its own post; I hope to give them space in the next week or two.

Monday, November 01, 2010

This Aspie speaks

I'd sort of seen some talk about today's Communication Shutdown, which encourages people to stay off of Facebook, Twitter, and social networking in general in support of autism.  With J. not sleeping and a build up on my "to do" list--plus my mind had registered that this was all taking place "next month"--I hadn't really paid it any attention.  But now it's next month and my Twitter is awash in #ASDay and #AutismShoutOut hash tags.

As it turns out, much has already been said of what I'm thinking, but I'll add my thoughts anyway.

The idea behind not using social media for a day is to experience the frustration of a social disconnect.  Yet this is almost backwards, as many people with autism have found that social media provide them with ways to connect much more successfully than in real life.  I prefer email and internet research to phone calls.  Facebook is how I keep in touch with many family members and friends.  I was late to join Twitter, but mostly because I have always known that it would suck me in too much (I'm trying very hard to balance that, and working has helped limit my time).  Online conversations play to my strengths and smooth over some of the weaknesses.  I get more time to process what has been said and think through my response.  My correspondent's words are available to read and re-read; I don't have to rely on a memory that's being bombarded with lots of simultaneous pieces of information.


The flip side is that Asperger's has not led to anything resembling silence for me.  I am frequently a chatterbug in real life.  In fact, I had to learn to be quiet and really listen and comprehend what's being said to me.  My experience of real-time conversations is probably different from most of yours, but I didn't know that for the longest time and have never known a different experience.  I didn't think to feel this set me apart until I was told that it did.

Slight aside: It irks me to be told that Aspies can't multitask.  The truth is that we are champion multitaskers; we just fill up our queues with items that might be considered a single task, or no task at all, by others.  When I'm talking to a person, I'm consciously processing what I hear, actively filtering out other noises, judging facial expressions and their relevance, scanning my databases for appropriate responses or anecdotes, weighing the quantity and quality of eye contact, and monitoring my own expressions and body language.  When I'm tired, I know that there will be a decrease in my comprehension, a lag in putting on appropriate appearances, and markedly less eye contact.

But really, that starts to get at my main issue with things like this Communication Shutdown.  So much of the conversation about autism is a description from the outside.  And I can't tell you how many times I've read an article about autism or Asperger's where the outside perspective is presented as fact and I find myself frustrated since it falls so far from my experience or clearly misunderstands.  I spent a long time convinced I couldn't have Asperger's because of these descriptions, because I am extremely sensitive and empathetic, because eye contact is difficult for me due to the overwhelming flood of information it provides.  It was only through the process of E.'s diagnosis, the 3 1/2 years leading up to it with us knowing this is what we were dealing with, and the persistent research both A. and I undertook that I was able to realize that there is a disconnect between a large part of the literature and the actual experience.

And I guess that's why I've shifted my focus here.  I want to correct some of those descriptions that share so little with my reality and give you a peek of the view from this side.

I can't do that if I shutdown communications.  Likewise, you can't hear me if you turn off your social media.

Sunday, October 31, 2010

Green grows my anxiety

E. has a co-morbid diagnosis of Anxiety Disorder, Not Otherwise Specified.  In other words, he worries a lot.  This summer, we tried some cognitive behavioral therapy.  It was not all that effective, more because the therapist did not seem to make any adjustments for the Asperger's piece of the equation.  He told us several times that dealing with anxiety in kids is easy.  But it doesn't really work that way in Asperger's.

Before we realized that we would probably be able to do more for E.'s anxiety than this therapist, A. remarked to me that maybe I could learn a thing or two through E.'s sessions.  See, I most definitely suffer from anxiety too.  (And I am trying to address it and will eventually, someday, when I'm sleeping again, read the cognitive behavioral therapy and Asperger's book we have.)

I recently received an email from E.'s school about their desire to form a green team and work on some initiatives.  For those who know me, you'll recognize that environmental issues are high on my list of concerns.  Which means that these are also something that cause me a fair amount of anxiety.  For example: our local recycling does not take glass.  The reason they gave when we first moved here is now moot, but they still do not take it and we haven't found a nearby place that will take it.  I have a very hard time throwing out glass--it is so recyclable--so we have a bunch of it in the garage right now.

Anyway, one idea this email floated was that of "waste-free lunches."  It's an idea I definitely support, something I try very hard to do for myself when I take my lunch someplace, but this is one of those times that my green desires conflict directly with my son's issues.  Right now, E.'s lunch consists of the following: half a cream cheese sandwich, some pretzels, a protein bar, fruit snacks, and a bottle of water.  The sandwich, pretzels, and water can all easily go to school in reuseable containers, but not so much the protein bar and fruit snacks.  They are, of course, individually wrapped.  My big victory, in regards to E., is that the fruit snacks are fruit-juice sweetened and don't contain any of the usual nasty stuff.

E. does not consistently eat everything in his lunchbox and usually requires a hefty snack when he gets home.  But one thing I think a lot of parents of Aspies would say about their kids' eating issues is that you do NOT mess with something that is working.  On occasion E. will eat every single thing in his lunchbox and, more importantly, he's not predictable on which specific items he'll eat on any one day.  So we put them all in there and hope for the best.

So he's not going to have a waste-free lunch anytime soon, not unless I cut out half of what he'll eat.  But now it's something I'll be fretting about until I can quiet that part of my thinking.

Wednesday, October 27, 2010

When the best laid plans are happily superfluous

Last week's Parenthood was a Halloween episode, and one of the central plot points was Christina's preparations to make Max's Halloween experience as positive as possible.  She plots out a route for trick-or-treating, explains her son's fears to neighbors, and plans all the supports he might need.  She knows that there might still be a meltdown, but figures that they can lower the chances if she can control as many of the variables as possible.

And then, once they're out with the family and Max sees younger kids going to a house that is particularly spooky and definitely not on Christina's planned route, the best laid plans gang agley, so to speak.  Max becomes insistent that he can handle the house and doesn't need parental shadowing.  The adults stand back and wait for the crisis.  Which doesn't happen.  Max returns, exuberant and excited by the spider ring he got.

I was reminded of the trip we took to Disneyland about two years ago.  A. and I were apprehensive and figured that it could end up a total bust.  We prepared thoroughly; A. especially did her research, including exit plans and food options.  There were a handful of rides we felt he could handle, plus shows and then all the sights.  It would be great if we could do more, but we made no definite plans.  If all else failed, we knew we could get him on the train and monorail and just ride around.

Once we were in the park, we started with the Bug's Life rides, as those are milder and aimed at younger kids.  At the second ride, E. changed his mind as soon as we hit the front of the line.  Luckily A. had found out that it's generally possible to leave the ride up to the very last minute, and we'd promised E. that he could change his mind at any time.  We were graciously directed to the exit.  After walking around and watching a few rides, he was ready to try another one.  As it turned out, he didn't back out of another ride the entire time we were there.  A few more rides and he was acclimated, game for just about anything he was tall enough to get on.

For the most part, E. didn't want to ride anything more than once.  He has something of a checklist mentality--done that, next...  The first ride he wanted to go on a second time, however, was one I never expected him to go on even once: a river ride where you travel over rapids and the like in a "barrel."  There's no avoiding getting wet and you spin around at the same time you're moving around.  Yet he was quite insistent.

Our preparation did come in handy though.  We were able to get a gluten-free pizza at one of the restaurants and new about the microwave in the hotel snack bar--both very helpful for getting E. fed.  We also stayed in one of the Disney properties, which meant that we could go back to our room for a bit in the middle of the day to get away from the crowds for a little bit.  Even if we don't stay at a Disney property next time, we'll definitely stay within walking distance so we can do this again.

We also stayed flexible.  We had a package that would have allowed us to enter the park one hour early one morning, but we discovered that it worked best for us to stay in the park late and then wake up whenever it happened.  We did go to a character breakfast one morning, but purposely chose a less popular one so that it wouldn't be too crowded.  We had no idea how E. might respond to the characters, and he was a little uncertain at first.  But after a bit, he warmed up, and we have pictures of him with Lilo, Stitch, Goofy, and Daisy.

I know better than to think every such trip will go so swimmingly--we've had examples to the contrary in the past two years.  But sometimes this kid surprises us in the best possible way and we get a glimpse of what we hope becomes the consistent norm.

(And don't tell him, but we're working on a trip to Legoland!)

Monday, October 25, 2010

Renovations and reintroductions

I made some noise last spring about putting my focus on writing about Asperger's.  At the time, I thought about starting a new blog altogether.  Over the summer, this idea morphed a bit until I decided that I wanted to shift the focus here.  I already feel that my identity as Mouse has moved this direction and that I have something of a presence, albeit a small one, as a commenter on Asperger's at other blogs.

To this end, I am slowly sticking most of my old posts into draft and making a few minor changes to others.  The ones that will not be moth-balled at any point are those that are most directly related to Asperger's.  Other posts will come back as I get a chance to go through them and as I write new posts that refer back to them.

In this process, I have also decided to change how I refer to my family members.  Scooter, in particular, has outgrown his epithet.  Following is the cast of characters and locations.  Since I'm not editing comments, I list both their previous and new names.  New designations are a mix of first and middle initials.

M.--That's me, Mouse.  Aspie mother, grad student (they haven't kicked me out yet), education student (almost have my certification now), middle school teacher.

A.--Formerly Trillian.  She's technically neurotypical, but geeky enough and "grazed by the arrow" in some categories, so she's not completely flabbergasted (most of the time) by E.'s and my particular quirks.

E.--Formerly Scooter.  7 1/2 and in second grade.  It's been almost exactly a year since his Asperger's diagnosis, but more than three since we started researching it.

J.--Formerly Thumper.  9-months-old.  He's been deemed neurotypical by none other than Tony Attwood, but that's a story for another post.

We live in Springfield; the main employer draws lots of scientists and such, so we're a quirky town.  My in-laws live in nearby Capital City.  Further down the road is Big City.

Wednesday, October 20, 2010

Memento, featuring Marvin

Shortly after my last post, Marvin suffered a catastrophic hard drive failure.

The first sign was that he didn't want to shut down, clinging desperately to consciousness. Then next time I hit the power key, he didn't respond other than to tell me the operating system couldn't be found.

For a couple days, I counted Marvin among the dead and mourned. I borrowed back my older laptop, the one that is mostly used for browsing the Lego website and that has only about 30 minutes of charge in its battery. It was a rebound relationship of convenience--just enough to let me complete my work for my online classes, but absolutely no passion.

I managed to breath new life into Marvin the next week. It took Ubuntu on a thumbdrive and a little messing with the BIOS, but suddenly I had a desktop with icons... and eventually, after many versions and some tweaking, internet access. Marvin was a little different, but I felt that we could make things work again. He asked me for a password, let me change the desktop appearance, promised to hold onto some of my information in a note.

When I came back the next day, Marvin showed no memory of having taken my information. He was nice enough about it--hey, give it to me again, I'm sure it's just a misunderstanding, I'll get it this time. But it quickly became clear that every time Marvin went to sleep, the information just vanished.

Our relationship has changed. He continues to be just as helpful. In particular, he likes to insist that I set a password. I decline matter-of-factly, even when he reminds me that this will leave my information unprotected. I've quit trying to explain to him that there's no point since he won't remember my password to protect my information anyway--we'll have this conversation again tomorrow. I've quietly memorized the key for our internet access... and access at my in-laws' too. Two different combinations of 26 letters and numbers. That's a lot of brain power for this sleep-deprived person!

I feel a little guilty for typing this up on Marvin. On the plus side, he'll have forgotten all about it by tomorrow.

Saturday, April 03, 2010

Awareness

Today is National Autism Awareness Day. I didn't set out to mark it specifically, but really just about every day is autism awareness day here.

J. will be 2-months-old soon. We're working hard to enjoy his babyness--and mostly succeed. He prefers human contact at all times and knows immediately when we've tried to put him down, even if he's in the deepest of sleep. He's smiling and starting to giggle. Some of my favorite moments are when he falls asleep on me, chest-to-chest, sinking in with the greatest contentment.

But A. and I both spend a lot of time wondering and conjecturing, trying to remember how things compare to last time.

He smiles and makes eye contact, even works to catch our eyes. But he smiled extensively for shadows and light, preferring to find patterns around him. And our memories go back to E. smiling at our high-contrast quilt with a triangular pattern and the ceiling fan.

E. showed an aversion to intrusive sounds even in the womb, kicking at the ultrasound wand.  J. was more laid-back during such exams, lazily turning away, but not getting worked up. He sleeps through a lot of noises in the house. But then today we sat in Starbucks and he was clearly disturbed by the coffee grinder and blender. And we start to wonder about sensory processing.

J. has a higher than average chance of having some issue on the spectrum. I've seen everything from a 10% to 33% chance, versus the general population's 1%. I imagine there's an even higher chance that he might have some problem, likely in the areas of sensory processing or attention.

We're under no delusion that we can stop J. from having a problem if he's already programmed to have one. But we've already determined that we'll call early intervention, jump on OT, find some help the second we have a clear indication that it's time.

Ironically, we're likely to receive less push-back from our pediatricians this time since J. has an older brother with a diagnosis. This time we won't hear that we're just over-concerned first-time parents. (Even though research has found that first-borns are more likely to be autistic.) (Oh, and our new location and pediatric clinic seems more amenable to the discussion.)

So we're aware, hyper-aware. And today's just another day for us.