The Mouse's Nest

This is a drill

2012-12-16T12:31:00.003-05:00

Door locked, windows covered, lights off, students behind heavy desks. This is only a drill, but it is hard not to think about the what-ifs at a time like this. What if I couldn't get to the door in time? What if the room next door was breached, leaving only the unlockable interior door? What if the shooter took aim at the flimsy walls of our portable classroom? What it...?

Many of the students are giggling, their seventh-grade hormones reacting to the forced proximity of other students. They whisper, boredom growing as the drill drags on. But afterwards, it's clear that some of them were thinking about the implications of a lockdown drill. Do you think this will ever happen for real? How would we know to go into lockdown? How would we know when it's safe to come out again?

The image from the Newtown, CT, shootings that most sticks in my mind is of a line of students being shepherded through the parking lot by their teachers. Fear and anguish are manifest on the children's faces; this is something no child should have to experience ever, let alone in a place dedicated to their nurturing. But what I look at more is their teachers' expressions: set, determined, unwavering. They are focused on the students and their safety.

I recognize this, although my experience did not end with the sudden absence of colleagues and children. But I remember September 11th and the drive to make sure the students in my charge were ok and taken care of and kept safe. I try to imagine maintaining the same presence with the sound of gunfire and the more immediate fear of mortality. I can only hope that this will remain a drill and only a drill.

A Mom by any other name

2012-05-30T22:12:00.001-04:00

It’s been ages since I posted here, but I can’t pass up a Blogging for LGBT Families Day.

“Can I ask you a question?” started the secretary at my school one day. We’re on friendly terms and have a shared interest in languages, so I expected it to be in that realm. “It’s personal,” she continued, “and I’ll understand if you don’t want to.”

Huh, I thought, but I tend to be open with people, so she proceeded.

“What do your kids call you and A.?”

I relaxed and smiled. For me, that’s neither prying nor too personal. People who have the opportunity to spend time around my kids with me will hear the answer plainly enough.

A. and I worried about this initially and decided to go with Mama and Mommy, figuring that E. would pick up on this and follow our lead. The problem was that we had trouble remembering which name we’d assigned each other. In fact, I have no memory of whether I was Mama or Mommy.

That didn’t seem to faze E., who came up with his own solution. Initially, I was mamamamamama. Or, more accurately, that was how he requested a nursing session. As he added words, this evolved and we soon noticed a consistent pattern in how he referred to each of us. A. was Mama, I Mimi. We say that he took the name Mommy, divided it into its two syllables and doubled them. Those names have stuck and become part of the family vocabulary.

When J. came along, the assumption was that he would simply follow the pattern E. established. And to some extent that’s true. “Do you want Mama or Mimi?” we’ll ask and he tells us who should bathe him or put him down for a nap. But, as is his way, he has added his own personal touch and shortened our names. A. is MAWM and I am MEEM (after a period of mum-mum, when I was synonymous with my breasts). Yes, the caps are necessary, as he tends to yell for us while running full tilt through the house.

I remember going through an evolution in what I called my own parents. Mommy-->Mom, Daddy-->Dad. My youngest sister would pull out the classic Mu-u-ther. The exact term didn't matter (though the tone of that last one did); the meaning was always clear. And so it goes in our house.

10 years later

2011-09-11T00:17:00.000-04:00

"They're trying to kill me," Yossarian told him calmly.

“No one's trying to kill you," Clevinger cried.

“Then why are they shooting at me?" Yossarian asked.

“They're shooting at everyone," Clevinger answered. "They're trying to kill everyone."

“And what difference does that make?"

Catch-22, Joseph Heller

I started reading Catch-22 in September 2001. If I took our copy off the shelf tonight, I expect I would find a bookmark about halfway through the novel, marking the spot I reached before bed on September 10, 2001. I mentioned to one of my students a few weeks later that I hadn’t been able to pick the novel back up. “But it’s so good,” he protested. “That’s the problem,” I replied.

For a long time, airplanes didn’t fly over Washington, DC. The airspace was eerily quiet. An occasional military aircraft would come along, and everybody would stop and stare, confirming that it had a right to be there, that it wasn’t happening again. A. and I still stop and watch after any airplane that seems to be too low, out of place, unexpected.

Shortly after the terrorist attacks, came the anthrax scare, and we wondered about the consequences of bringing in the mail. Then tornadoes swept through the area, hitting a college campus near us; although clearly a phenomenon connected solely to the weather, it felt like Nature was joining in against us. A year later, random sniper attacks had us wondering if we had found a new normal of life with fear and anxiety.

A few years later, I informed a class that I would be moving to Toronto “because it’s a safer place for my family.” A student interpolated in a calm voice, “To avoid dirty bombs and terrorist attacks?” In fact, the decision was based on Canada’s greater acceptance of same-sex families and the trend (at the time) of states moving in the opposite direction, but his reasoning made complete sense to his classmates.

A lot has already been said about this particular anniversary and even more will fill pages and airwaves tomorrow. Most days I can think about political implications and how our world has changed. But for now, this is more about gut emotion and sense memories.

We are family, but we already knew that

2011-06-01T12:58:00.000-04:00

It's June 1st again, which makes it "Blogging for LGBT Families" Day.

As of last month, we are a family of four, at least in the eyes of our state. A. is officially J.'s mother and we have the paperwork to prove it. To be fair to our state, we were allowed to register J.'s birth with A.'s name as "Parent 2." And we were up front about what we were doing. Crossed out father on the state forms. Attached a copy of our Canadian marriage license. Had our attorney send a letter to the appropriate bureau. Nonetheless, there's lots of advice floating around about having some sort of court decree to back up the birth certificate outside of the state that issued the birth certificate (e.g., this pdf at NCLR--it's for California, but the advice in the "Parenting" section applies generally).

Since we're in a different state than the one in which we completed E.'s adoption, there were differences in the procedure. We waited a year so that we'd be able to follow the steps for a step-parent adoption (our state has a rule about the child living with the step-parent for at least a year first), instead of a more expensive and extremely invasive "stranger" adoption. Even with all that, I had to meet with a social worker to present evidence that I understood that allowing A. to adopt J. creates a permanent relationship. Something the judge reiterated. I was good and simply responded, "I understand," instead of "That's kind of the point, isn't it?"

My in-laws were able to attend our hearing. They were excited and a bit nervous, just like A. and me. We knew this was supposed to be pro forma, but we couldn't help worrying something would go awry at the last minute. After the fact, my mother-in-law made note of the anti-climax: "It doesn't change anything about the last fifteen months." A. was not suddenly more of J.'s mother. And as we noted to my in-laws, our main reason for going through this is to take care of the "what ifs"--those life-changing events we hope to avoid until the kids are adults with their own families and we've had many years of being doting grandparents.

I'm sure I've said this before--A. and I are thankful that we have the opportunity to provide a legal safety net for our family. We understand the system enough to pursue this, we have enough money (or the ability to prioritize spending) to afford it, we are comfortable enough in our relationship to have the uncomfortable discussions about future possibilities. But not everybody is in a position to do this, and their families shouldn't have to worry that an unfortunate event will further rip their family apart.

Grad school blues, redux

2011-05-26T22:03:00.000-04:00

Most of my reasons for wanting the PhD are superficial. I've put so much time in. I'm almost ABD and then "all" I'd have left is my dissertation. I want to prove I'm smart enough to add those letters to my CV, compounded by the fact that there are so many PhDs in our town.

Then there are the reasons that carry a little more weight. I would earn more as a teacher. Not a lot more each year, but it would add up over the time I intend to spend in this profession. And the one with the most heft--my dissertation idea continues to form and mature, and sometimes I wonder if its insistence on existing will ever let me go until it's written down.

But I should listen to my body too, right? My back and shoulders are one giant knot of tension. My left trapezius is in perpetual spasm. I'm hunched over far too much. And I can't deny that when I think of leaving this degree behind, an immediate sense of relief washes over me. I think of the things I would do with this time--reading for pleasure, giving the dog more attention, turning my attention from the computer to my kids, doing more bookbinding, taming the accumulation of books and papers I don't particularly care for--and I'm happy.

I'm staring at a new set of revisions. My initial impulse is to chuck it all, instead of another week or two of killing myself to get this all done so I can stay on track for my current set of deadlines. It doesn't help that J. is fighting his second ear and sinus infection since getting ear-tubes and that the sleep deprivation continues unabated. How different would all of this be if I'd had a decent night's sleep in the past two years? I'm tempted to say that I should wait to make my decision on pushing ahead or throwing in the towel until I'm better rested, but when will that be? Certainly not before I hit the next deadlines. So I'm stuck making the call--dogged pursuit of knowledge for another year or take the time for myself now--with what limited cognitive functioning I currently have available.

Happy Birthday, J.

2011-02-07T23:59:00.000-05:00

J. is turning one. One year old. It's been a year.

Say it however you want, it just sounds wrong.

My baby is one. He's quickly leaving babyhood behind and working hard on becoming a toddler.

That he is his own person, not a little clone of me or E., has been made abundantly clear in the past twelve months. Where E. was cautious, J. barrels ahead. He has already chipped a tooth and is currently sporting an abraded chin, courtesy of a recent tumble. While he is not yet walking without support, he does not display the same tentativeness that E. did.

We didn't babyproof a lot for E. Sure, we started, but once we ran out of steam, we figured that we would just be attentive and then secure the areas to which E. was drawn. And we waited. He just didn't seem to think of getting into drawers and cabinets if their contents were not obvious.

We haven't babyproofed any significant amount in this house, but mostly because we're tired. J. takes every opportunity to crawl into the kitchen, open drawers, pull up and try to reach things. He wants to go head first down the single step between our living room and sun room. He goes after my computer, coffee, recycling. Kleenex are the coolest thing, and he will desperately try to grab one and stuff it in his mouth before I can get it away.

He continues to be a poor sleeper, waking every hour or two. On good nights, the periods sleep stretch just a bit longer. But his pediatrician has suggested that he may just not need a lot of sleep and, even if we can get him to sleep through the night, it is not likely to be as long as we would want. I pretend she could be wrong, but I know she's got him figured out.

But then, when he's had the sleep he wants, he wakes up in the most glorious mood, smiling and giggling, reaching for us, pointing to where he wants to go.

And the pointing. I have these moments when I say, "Oh, this is what is meant about pointing and joint attention." J. still does not have any words that I would record as definitively his first, but he is a pretty clear communicator. He points at what he wants and where to go. He says a number of syllables that seem, in context, to have meaning. Dis (this), dat (that), dug (duck or dog, depending on what's in front of him), mum-mum (me), mama (A.), da (yeah--apparently he's Russian).

J. gets super-excited every time he sees a microwave and something coming out of it. He will try everything we put in front of him. I believe that there's only one thing I'm seen him turn down completely after just one bite--lima beans. (That's my boy!) After E.'s picky palette, it's amazing to be able to pick a few things from my own meal and offer them to J., knowing he'll be happy to give it a try. He may not be much of a sleeper, but I definitely got my good eater.

* * * * *

This afternoon, J. and I waited for E. to finish school. He sat on my hip, supported by the sling. He grabbed his jacket from me and covered his face. "Where's J.?" I asked. He dropped his hands, revealing his face and the biggest grin.

Happy Birthday, J.

Two by two and three by three

2011-01-23T01:48:00.000-05:00

E. is in the middle of another testing cycle at school. There are three or four in a year. I'm going to try to stay off the broader issue of standardized testing in our schools today. Let's just say that as both an educator and a parent, I feel like there is WAY too much emphasis on test-taking.

Standardized testing does not "count" for E. until third grade. Nonetheless, he began taking a version of the tests in kindergarten. My impression is that they do this in part to provide teachers with a relative measure of students' achievement, but largely in order to get them acclimated to the testing process.

Much different than my experience in the days of yore, very few of these tests are done with pencil and paper. For E. this is a good thing. His motor skills are such that he might actually miss a number of questions based entirely on inaccurate filling of bubbles. Instead, he just has to move the mouse and click his answer. As a child of the computer generation, that is well within his ability.

When the standardized tests are completed on the computer, they tend to be adaptive, meaning that they difficulty of the questions is adjusted to your performance. Get questions right, and the difficulty increases little by little; miss several and you go the other direction.

E. came home the other day and told us that there had been multiplication on his test. 3 x 100 was the first question. And so he figured out how to multiply. As far as I can tell, he surveyed the available answers, considered how one might figure out the question, and moved on from there. He now knows how to multiply, figured several random facts I gave him--more of the basic-facts variety, but still requiring an understanding of the underlying concept.

I can't say I'm surprised by this. I remember doing some math problems with him in a year or two ago when it was clear that he was close to using multiplication to figure out answers. He just didn't realize that was what he was doing, didn't know the term 'multiplication' or its symbols.

Math is a second language for me. It gives shape to my thoughts. I love its order and do figures for fun. When E. would come home last year, complaining about math, saying he hated it, I had to steel myself not to take it personally. This year has been so much better for him in many ways, helped a lot by the fact that his current teacher is a math-science kind of person. Even when E. has struggled with the occasional concept, he is much less resistant to working with me and, dare I say, we end up having fun and connecting over the lessons. And when he tells me that he's figured out an advanced concept on his own, just because it was there in front of him, I can't help but say, "That's my son!"

I could really use a Time-Turner

2011-01-10T01:41:00.000-05:00

I doubt it would surprise anybody who knows me that Hermione Granger is the character with whom I most relate. I was even a bit jealous when she got to take extra classes in The Prisoner of Azkaban, because I would have done that when I was back in school. (And sort of did since in my junior year I took a 0-hour class--a period that ran before the official day began--followed by a full day of academic courses, ending with an independent study after school. Eight courses in a normally six-period day.)

I could use a Time-Turner right about now. Not for academic over-achievement, but for simple achievement.

I am officially back on the clock for my doctoral program. I have set up a work area, read some secondary literature, figured out a direction for some immediate writing. But the time I have set aside on paper has a tendency to shrink and disappear.

Part of it is spent multi-tasking. Pumping so that J. can have a bottle (that he won't drink) at daycare. Grabbing some lunch. Making coffee. And yes, checking in on Twitter and the like since I have no opportunity to do that until after I finish teaching.

Part of it gets eaten up by the pull of my other identities. I tutor a couple hours a week--math right now--in my role as public-school teacher and small-town resident. I've been doing daycare pick-up for J., something that takes about an hour total. On occasion, I time it so that I can get J. early enough to then pick up E.

I have been trying to figure out how to shift some of my work to the evening, after both boys are in bed. But J. still sleeps inconsistently. At bedtime, I never know how long I will have before I'm needed back in the bedroom. And it takes me a while to get settled back into my planned task, to get my head back into that realm.

I should have done a little work just now. There's a section of my paper that I can envision and for which I have the foundation laid. I just need to turn it into academic-speak with appropriate footnotes and formatting. I have some citations to throw in, marked out in my notes. I want to do this soon, as a follow up to my latest correspondence with my supervisor, as proof to us both that I can still do this.

I figure just a few turns and I could have those pages in no time. Those pages and a good nap too!

Resolved, 2011

2011-01-02T01:03:00.000-05:00

I'm not even going to look back at what I wrote last year. That would be one sure way to pop the optimism I've mustered for this new year.

As always, there are plenty of goals I have as we hand a new calendar on the wall. This year, it's not simply inspired by the Earth's turning. Instead, we have a few changes here--J. is starting daycare, my grad-school maternity leave is up--which are inspiring some new-leaf-turning.

My goals and their reasons:

Household:

We will finish rearranging our house. We've been moving furniture and going through our things to create space for everybody. Currently J. and all of his stuff are in our bedroom. We're about halfway through effecting the following: J.'s stuff into the third bedroom (plus switch some of E.'s furniture to J. and move other things into his room), office furniture (and A.'s workspace) into back of living room, M.'s stuff into corner of sunroom, all toys into boys' bedrooms. After all that, I hope to get started on the garden.
We will be more organized during the school week. Now that all of us will need to get out of the house in the morning, we absolutely must follow through on things like packing lunches the night before and picking out clothes. I'm also going to return to meal-planning so we don't waste time every night debating what we feel like making or eating.
I will work on E.'s accepted foods. We know better than to think this will be easy or quick, but I have a few ideas for this and a few more resources to consult. The meal-planning and family dinners are part of this. I will put a little bit of all we're eating on E.'s plate, in addition to his usual chicken nuggets or grilled cheese sandwich, not forcing him to eat any of it, but sort of desensitizing him. We are also not above bribery.

Work/school:

I'm getting back on track for my PhD. I will be taking as much advantage of J.'s time in daycare as I can to make sure I keep things rolling. I expect to finish my comps in May or June, although the actual date of my exams will depend somewhat on my committee.
I will do my best to pick up another 1 or 2 sections of teaching for next year (i.e. the 2011-12 school year). This will get me over the magical number that makes me eligible for insurance through the school district here and help us pump up our savings, all of which will give us some breathing room (and help us prepare for the eventuality in which A. goes down to part-time or returns to contract work).

I'll leave it at that for now. I have some hopes for exercise, healthy eating, and the like, but I know better than to make the list too long. If we can get the house in order, get me through comps, and manage to get everybody where they belong on a regular basis, we'll have achieved a real victory.

Santa Claus is coming to town

2010-12-24T22:07:00.000-05:00

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.

On sneezer and wheezer and cougher and...

2010-12-20T01:02:00.000-05:00

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.

Can I get that in writing?

2010-12-08T00:57:00.000-05:00

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.

What I did on summer vacation

2010-11-08T01:35:00.000-05:00

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.

This Aspie speaks

2010-11-01T17:24:00.000-04:00

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.

Green grows my anxiety

2010-10-31T01:47:00.000-04:00

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.

When the best laid plans are happily superfluous

2010-10-27T01:24:00.000-04:00

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!)

Renovations and reintroductions

2010-10-25T17:34:00.000-04:00

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.

Memento, featuring Marvin

2010-10-20T20:37:00.003-04:00

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.

Awareness

2010-04-03T00:08:00.003-04:00

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.

Fan girl squee

2010-03-25T23:21:00.003-04:00

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?

Why I'm watching "Parenthood"

2010-03-08T17:16:00.001-05:00

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.

Official

2009-10-29T23:44:00.003-04:00

To borrow a line from A.: In a move that surprised no one, he has been diagnosed with Asperger's.

But it's official now. Full report to follow, etc, etc.

Nonetheless, they sent us away with a short letter making it official. And a good number of suggestions.

The hardest part will be figuring out if we can get any services close to home or if we'll be traveling to Big City on a more regular basis. That will be the case for certain things, like the nutritional counseling we can get through their clinic, but we're hoping to find a good, local match for some cognitive behavior therapy once we get onto our new health insurance.

I also came away with a few suggestions for people to call for myself. (And not even a batted eye when I asked.)

This is not a panacea, but at least we feel like we've been on the right track and have opened up a few more avenues for help.

Closer to official

2009-10-22T21:21:00.003-04:00

We've only been asking questions since E. was 18-months-old. To be fair, A. is the one who initiated them. Mostly I felt like I understood why he was odd in the ways he was--and most of them pointed to my family's bank of personal quirks, so I mostly didn't want to follow that trail too far, at first.

I wrote a while back about a particular student whom I recognized as likely having Asperger's. There's a moment I left out from that anecdote. As I read the article, I so got it. I completely understood where the kids they were profiling were coming from. But, I told myself then and a thousand times after, I am empathetic to a fault and overly sensitive to others' feelings. That means this isn't me.

A couple years later, A. and I were sitting in the coffeeshop near our condo. Our conversation, as was common in those days shortly after E. turned 4, turned to autism. Both of us had moved into fix-it mode, lining up OT and looking into other options for him. I had mostly gotten over the guilt I'd been feeling about the role of my genetics. And I finally spoke out loud an idea that had been brewing for a while at that point: I have Asperger's. My ability to read emotions and my sensitivity to others are both the result of years of observing and categorizing.

I think that since then, we've known that E. would end up just on one side or the other of the diagnostic line for autism spectrum disorder--our guess has long been Asperger's, a suspicion that has only grown stronger as E. gets older.

And now we're moving towards official.

E. went in for educational testing last week, the ADOS administered by the district's autism team.

The written report will take a few weeks yet, but the word has come back to us that he most definitely qualifies. He goes in for a full evaluation and possible medical diagnosis soon. We don't expect that outcome to be substantially different, perhaps just further refinement of where we are now.

This reminds me a bit of when we got our second-parent adoption. Suddenly we had official recognition, but at the same time nothing changed. Everything is exactly as we've known it to be all along.

Except that this time there's the kernel of the potential for where this will take us down the line.

A couple more steps

2009-09-18T23:37:00.004-04:00

As I was driving yesterday afternoon, a thought came to me unbidden: I had in my possession a business card for the child psychologist who was part of E.'s evaluation team. The one that told us to come back in a year and see where he was then. The impression A. and I had at the time was that the evaluation team was split and that she might lean towards the diagnosis.

In any case, we were back in the queue for the re-evaluation. When we called this summer, we were told we would need to fill out the paperwork again, go through the whole process. This didn't seem quite right, but we couldn't remember any explicit promises that there'd be a shorter line for the re-eval, so we did as we were told.

So I called the psychologist this morning to let her know about the recent rough patch and get some suggestions. Which boil down mostly to the fact that the adults around him need to know and understand his communication limitations. While we need to do some advocating, the main key will be getting his teacher to communicate more fully and on a regular, preferably daily, basis. I suspect this will be harder than it looks on paper since most of my communication with the teacher so far have left me unsatisfied; she never provides all the information I'm looking for and is not so good on following through. It will take a lot of effort on our part.

There was, of course, an ulterior motive in making the call today, and I didn't have to do much of anything to get movement in that direction. The psychologist pulled up E.'s record to remind herself of the assessment. I answered one of her questions that we were in line for the re-eval, but didn't have an appointment set up yet. She mentioned that she didn't see why we should have to go through the whole process again since he's already an established patient and they have his history on record.

Turns out that there was a change in the administrative staff this past summer, so our status of re-eval was not handled properly. We got a call this afternoon to schedule our appointment--not for a little over a month, but better than what they'd been telling us before.

I don't think a diagnosis will be a cure-all. But, as I explained to the psychologist, I think it will give us better access to services and some terminology that will lead to a better understanding of the cluster of issues E. has--or at least sound official enough that a teacher might take heed. Currently, there are several things his therapists are sneaking in without them being part of his IEP; with an autism or Asperger's diagnosis, he would change categories and these issues would be addressed head on in his paperwork.

We've still got an uphill battle. We need to address the current problems now and not let them go any further. And I already know it won't be easy. But I'll take the small victory for today. I'm too exhausted not to.

Kvetch

2009-08-24T13:23:00.003-04:00

It's a chilly and dreary day here. Alone, not quite enough to put me in a sour mood--I'm happy about the temperature drop since I prefer cool weather and, this year in particular, have been looking forward to switching to my fall/winter wardrobe since nearly all of my maternity clothing fits into that category.

But I've spent the morning being reminded of why I've held off so long on getting my teacher certification. (Which, by the way, I've decided to get my teacher certification and enrolled in an online alternative licensure program.) The information available on my course so far does nothing to correct my long-standing perspective that most education courses are fairly simple, but make sure you'll put in time by creating busywork. I have a worksheet to do this week.

I've also been trying to track down and clear up the problem that has led to my acceptance papers showing the wrong endorsement. I'm working on my secondary license, requiring me to pick a subject. Given the state's requirements and my own personal preference, I of course indicated Latin. Except the paperwork came back to me with Language Arts (i.e., English). I've already received several different, sometimes contradictory answers about why this happened--all from the same person. And while I most likely will get a second endorsement in Language Arts (especially if it looks like I'll be pursuing high-school teaching as a full-time gig), I do not have enough credit hours to qualify for it as a first endorsement.

The most recent email informed me that there is no Latin endorsement. So I've sent back an explanation of where its definition appears in the education department's regulations (there's a general Languages endorsement with more specific information in the subsections) and am hoping we can get this cleared up.

Then I'm also dealing with some pregnancy-related anxiety. I had already decided that I wouldn't get the H1N1 vaccination when it becomes available, despite the high priority given to pregnant women. But it looks like that will be a moot point anyway, as there's a decent chance it is currently working its way through our school system. There's a chance it's regular flu, and we won't find out test results until the end of the week, but the speed and severity with which it has hit our middle school sure makes it sound like H1N1. I expect to see it hit the other schools within a few days now. So I will probably end up exposed to it well before the vaccine would be available anyway. Of course, this makes me nervous about accepting sub jobs, so I'm trying to keep a close eye on developments in order to balance my health with our checking account. (And counting down to the end of the month when A. is supposed to get paid for the job she started this month--but we've already played one round of "where's my money?" this summer, so we're waiting to see how this goes.)

I see that I have a new email in my inbox. Hopefully it's the positive conclusion to my endorsement issue. And then, having vented here and had a happy resolution, I can return to the paper I've promised my supervisor.