Friday, December 24, 2010

Santa Claus is coming to town

My parents didn't want me to believe in Santa Claus.  So, of course, I did.

It's not even that they didn't do anything to reinforce the myth.  They straight out told me that Santa didn't exist.  I would argue with them.  Magic explained it all.  It didn't matter that I knew my parents bought the presents and filled the stockings.  Somehow Santa was still a part of it all.

I think I needed that magic in my life.  Still do, although it manifests now as my love of reading science fiction and fantasy.

The year that my parents had nearly convinced me of Santa's non-existence, I received a present with a "From: Santa" gift-tag.  I waved that around as the very proof I had been lacking for so many years.  Even though the gift wrap and handwriting matched the other gifts from a certain aunt.

I suspect that my parents' original decision, not to indulge a belief in Santa, came from my father and matched his decision to raise us knowing about both Christianity and Judaism without encouraging blind belief in either.  It's something I never thought to ask my dad before he died, but I can imagine it as a topic we might have discussed over coffee when E. was a baby.  (My mother is something of an "unreliable narrator," so conversations like this just don't happen very often for us.)

A. and I are letting E. believe in Santa.  The story is everywhere anyway, and E. just loves the various Christmas movies and stories, fed by A.'s love of them and habit of playing them during the fall, starting with The Nightmare Before Christmas shortly before Halloween.  After seeing The Polar Express a few years ago, he found a jingle bell in our house and carried it around with great reverence.

I can reconcile our encouragement of all this with our desire to raise E. to be a critical thinker thanks to an essay written by Dale McGowan.  He's run it during a couple Christmas seasons and it appears in his book Parenting Beyond Belief.  The short version is that Santa provides kids with an opportunity to reason through something that they are originally told just to believe.

E. is not ready to stop believing yet.  He has accepted, without question, Santa's budgetary limits and deadlines for wishlists.  He does not care to notice that the gift-tags are the same as on some of our presents, that the handwriting is mine, that Santa uses different wrapping paper at our house and at his grandparents'.  He does not dwell on the logisitics of Santa making it around the world in one night.  All of it still just is.

And I'm happy for it to stay that way for just a bit longer.

Monday, December 20, 2010

On sneezer and wheezer and cougher and...

Less than a week until Christmas.  This holiday season has been more fraught than others, with E. on a bit of a trigger.  It probably didn't help that we started out December with a rush of presents.  E. has two advent calendars this year: a Lego one, which has become something of a tradition, and the more common chocolate calendar, courtesy of his grandma.  On top of that, Hanukkah began December 1st, so there were gifts associated with that.  The tears began immediately when he had some trouble putting together the Lego Star Wars set on that very first night.

Finally, we realized that he's probably been fighting illness since Thanksgiving.  None of us has been at our best since he came down with some 24-hour bug the night before Thanksgiving.  For the past two weeks, I've had a particularly bad sore throat.  Through several doctors' visits, at least one for each of us, we've determined the following: our household is suffering from a combination of strep throat, stomach flu, and a virus (or 3).  E. stayed home from school on Thursday and Friday, extending his winter break by a couple days, but he's still coughing up a storm.  We should have realized, even before the sore throat and coughing began, that he was not feeling well, as an inexplicable increase in meltdowns is almost always a sign he's ill.  We'd attributed it to the holiday season, but it's been even more intense than usual.

After two days of antibiotics, I'm starting to feel functional again.  For the virus E. has, it's likely to take another 3-5 days for recovery.  Just in time for the Christmas festivities.  I sure hope that works out since I'd rather avoid continuous Lego meltdown next Saturday.

Wednesday, December 08, 2010

Can I get that in writing?

Back when E. was in kindergarten, A. and I borrowed a DVD from the school district's autism team (not an unusual act).  Three hours of Tony Attwood discussing Asperger's.  Both of us found it riveting.  And one thing I definitely have to give him is that it's possible to listen to him talk about the challenges posed and the work that needs to go into supporting Aspies and still come away feeling optimistic.  He clearly appreciates Aspies' strengths and quirks and is one of the few NTs I've come across who really seems to get it.

A. has read even more of Attwood's work than I have at this point, and getting to hear him talk in person was a definite highlight of the conference we attended this summer.

As I mentioned before, J. was with us for the conference.  A. and I had our spots on the far aisle, just a few tables in from the door.  When he would fuss beyond being hungry, I would take him just out of the auditorium, catching as much as I could from the chairs on the other side of the door.  I had both the stroller and sling, so we walked a lot too.

At one of the breaks, I was back in the auditorium with A.  Attwood was striding out, trying, I'm sure, to get a few minutes downtime before continuing his presentation.  But when he saw us off to the side passing J. back and forth between us, he came over and expressed his surprise to see the baby.  He'd had no idea there was one in the crowd.  I explained that we'd been in and out, depending on J.'s mood (and felt better knowing that he had not been disruptive).  Attwood bent down a little and looked J. in the eyes for a few seconds, taking his measure, smiling, engaging him.  He looked back at us and pronounced, "He's just fine.  No autism here."

Now I get that this is not a formal evaluation and that we will have no recourse should we find ourselves with a diagnosis down the line, but really Attwood was giving weight to an opinion A. and I have already expressed: J. is neurotypical.

Some of our reasons are subtle and hard to pin down.  It's been seven years since E. was this age, so the memories are not fresh.  Yet while we did not have concerns at this point in E.'s life, we were able to recognize some of the earlier signs once we began reading about Asperger's.

It's not that E. did not make eye contact, but it wasn't his focus.  J., on the other hand, craves our attention and draws it out of us by catching our eye.  Whereas E. could spend a long time studying geometric patterns, J. will only look at them as long as there's no face or other interactive opportunity available.

There's a huge difference in how our two boys play(ed) at this age.  E. has always loved toys with wheels.  We would later find out that staring at spinning wheels is a common trait of kids on the spectrum.  J. enjoys his buses, but generally propels them along so that he can pursue.  He varies how he plays with his toys and explores them with all of his senses.  Everything goes into his mouth or is used to bang into something else.  We joke that his use of toys as tools illustrates the human link with the apes.

The differences extend to all of J.'s interactions with the world, his movement, his interests, the way he eats.  I know that this is not a "Get out of jail free" card and that we have a high chance of some sensory issue and/or other quirks, but it's clear to us that J. is on a far different trajectory than E. ever was.  It's not necessarily better--I have moments of wondering, "What am I going to do with an NT?"--just new ground.

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


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.

Thursday, March 25, 2010

Fan girl squee

I regularly read Amalah. I started with her main blog, but also check in on her at the Advice Smackdown, Bounce Back, Mamapop, and revisited Zero to Forty during my recent pregnancy. What can I say? She makes me laugh, so I'm willing to read about all sorts of stuff I wouldn't seek out otherwise.

But I'm especially devoted to her personal blog since she writes so honestly about dealing with her son Noah's quirks--quirks that remind me of a certain elder son of mine--with humor and love.

So it was both a surprise and thrill to discover that a comment I left on her inaugural post for her new column--"Isn't That Special" on special-needs parenting--had served as the framing device for her second post. And of course it's full of passion and just so right.

Not entirely connected and not that I think my usual writing is anywhere as compelling as Amy's, but I figured I'd throw this out there for my regular readers, especially since I know a bunch of you in real life. I've been thinking seriously about starting a new blog with a more developed focus on Asperger's. Being the parent of a kid with Asperger's, suspecting it in myself, what research is out there, my own half-baked ideas. I'm toying with the idea of writing it fully as myself or at least in a manner more easily traceable to my name. I haven't done much in terms of deciding on a platform or figuring out how to do things like Amazon Associates (since I've read widely on the subject and have a number of books to recommend). So basically my question to you: yea or nay?

Monday, March 08, 2010

Why I'm watching "Parenthood"

I probably would have watched NBC's new show Parenthood regardless, but my initial viewership became guaranteed when I read that Asperger's would come up. I definitely wanted to see how they would handle it.

Max (Max Burkholder) is the son of Adam (Peter Krause) and Christina (Monica Potter). It is clear from the very beginning of the first episode that he is a bit quirky. He's insisted on wearing the same pirate-inspired outfit to school for days. His dad is excited about their upcoming Little League game, but Max is reluctant to put on the uniform. At school (kindergarten or first grade, I'm guessing), he struggles to cut out a shape drawn on construction paper and to interact with the other students. When another kid calls him a freak, he leaps at him and bites.

The meeting at school includes phrases, like "We're not sure this is the right place for him," and a referral to an educational therapist. After that next meeting, Christina goes to find Adam and tells him that the educational therapist thinks they're looking at Asperger's. Adam responds by saying they'll get a tutor for Max and fixates on this even as Christina is trying to redirect him--it's not just the academics, there's the social component. Finally she says, through the tears, "There's something wrong with my baby."

This finally sinks in for Adam when he's standing outside of school with Max while the rest of the family is inside watching his niece's school performance. Max cannot go in because there are candles outside the auditorium, and he has a particularly strong fear of fire. When Zeek (Craig T. Nelson), Adam's father, comes out to suggest that Max just needs to get over it, it's Adam's turn to say, "There's something wrong with my son." Zeek, who is very much of the macho school of living, backs off a little, but I suspect he'll take more to come around fully.

My initial reaction was frustration over all the tears and agony. Our son is fine. He's mainstreamed, has friends, shows affection. I fully expect that he will be able to navigate life--he just needs a little extra support and explicit teaching up front. Move on, don't dwell and wallow.

But at the same time, I could feel my own tears welling up, and it didn't take long before I found myself thinking about the first time we were told the word "autism." Even more importantly, I was able to remember that we are dealing with a kid with 3 years of interventions now. We haven't had to deal with biting since it was vaguely age-appropriate. And then creeps in the memory of the note earlier this year that he had slapped a classmate. Or the fact that he wore a pirate hat this weekend (but backwards, signifying it was a "vacation hat" and don't call it anything else) when we went shoe shopping.

Our family's in a pretty good place now. He's improved and we've adapted. This is the gift of time and perspective.

You can be sure I will continue to watch Parenthood, if for nothing other than to root on Adam, Christina, and Max as they work towards a better place.