A.'s last day of school was this past week, and we've been able to watch her transition into summer life. It's always interesting, because, as much as A. complains about going to school, in the summer she always complains about being bored. Summer is also the time that A. begins to get interested in being extremely interactive with Thomas and I -- she wants to show us things, wants to talk to us about things, and will spend a lot more time in the common rooms of the house, just so she can be near us to talk or banter or just hang out. It's touching, because I always treasure any time she wants to spend with me, but it's also interesting, because it makes me wonder if a lot of the reason why she's often so withdrawn throughout the rest of the year is simply because she overloads her social circuits when she's in the classroom all day long where she's forced to interact with so many different people all day long. I wonder if part of her misery isn't simply the exhaustion of being actively social is a very confusing and often harsh environment, so that when she comes home from school she really needs several hours to just be by herself and get back to a comfortable level -- only to then have to go to bed, get up, and do it all again the next day. I can empathize with this a great deal, because interacting with people all day long is also very exhausting for me, and if I try to overdo it by maintaining a high level of social interaction several days in a row, I get grouchy and feel exhausted and sometimes just shut down. Again, I suppose it shouldn't surprise me that I've found yet one more thing I have in common with my daughter.
Still, the summer is A.'s favorite time of the year. I'm actually very comforted because she hasn't been focusing as much on "slacking off" this year, and she actually wants to be engaged in activities and adventures. We do have a lot planned over the next couple of months. First of all, A. is going to go spend a couple of weeks with her grandmother, during which time they are both taking a grandmother-granddaughter trip to Washington, D.C. A.'s major goal for the trip is to visit the three branches of government, see the memorials, and visit the museums. I think she'll appreciate being in Washington, D.C. more this time around than she did when Thomas and I took her last. She's studied a lot more about history and social studies, and I think she's just at an age where she can fully understand what she sees there. Not to mention she always has a blast when she spends time with her grandmother.
I plan to take a couple of days off in the summer to just spend with A. -- whether it's going to Dollywood Splash Country or just hanging around Knoxville, shopping for nerdy things in the Mall and eating frozen yogurt. I really want to focus on spending time with A. this summer, not only to keep her from feeling bored, but also just to make sure she feels included and surrounded by love. I feel like I've really been way too focused on my job this past year, and I feel like I've watched and seen how that's negatively impacted her performance in school, her self-esteem, her social interactions with others, and her overall mood in general. I want to make sure she understands how important a priority she is to me, and I feel like I need to make sure that's something that gets emphasized right now -- especially since Thomas and I will be beginning our journey towards adding another child to the family in just one more week. The good news is that A. and I have talked at great length about her having a sibling, and she's definitely becoming more comfortable with the idea -- more on that in a future entry.
The biggest plan we have for the summer, however, is a week-long beach trip to Perdido Key. We'll be heading that way the last week of July, right before the summer is over and A. has to go back to school. A. absolutely loves the beach, so I'm looking forward to everyone having a wonderful, relaxing time. There will definitely be much riding the waves and swimming in the pools, and just spending time with family and relaxing together. I am so very grateful that we have the means of actually going on a family vacation this summer, and I'm very much looking forward to it.
All in all, it should be a really amazing summer. We have a lot of fun and exciting things on tap. In the meantime, I'll just relish every time I get a sleepy "I love you, Mom" out of my daughter, because those are words I don't hear often enough, and words I will always want to hear.
In these snippets from the archives, my daughter accuses me of being echolalic, and she desperately needs some increased sensory input after I pull her out of her regular routine.
September 1, 2006:
As A. and I were walking up the stairs to our apartment this evening, she slipped her hand beneath my arm and ever-so-gently grasped my elbow. It struck me as such an incredibly “lady-like” thing to do, that my voice immediately fell into a crude impression of a deep Southern accent.
“Why, it’s not every day I have the pleasure of such a lovely lady on my arm,” I said.
A. screwed up her face at me, and smiled warily. “What are you quoting from?” she asked — the very same phrase I use whenever she has expressed something echolalic that I don’t recognize.
I have images in my head of – many years from now – A. using this phrase on the first suitor who tries to impress her with some swarmy romantic line.
EDIT: Apparently, it’s not swarmy. It’s smarmy. But just so you know, I’m not the only one who
can’t talk right speaks this crazy language y’all think is just totally made up.
September 4, 2006:
Ah, the exciting holiday weekend visiting the family. There really is nothing in the world quite like it.
A. has been in need of a great deal of sensory input today. She’s been in a terrible mood, and has been needing a great deal of pressure and huge squeezes, slamming herself into me for huge, sharp hugs. She even asked for joint compression today, which I haven’t done in ages. It does seem to help. I think it always throws her off a bit to be removed from the routine we’re used to at our own apartment. Plus, she ingests entirely too much sugar when we come to visit, because her grandmother and great-grandmother spoil her rotten.
Of course, I ingest entirely too much sugar when I come to visit, because they spoil me rotten, too. But I mowed the lawn today. So hopefully that counts for something.
To be fair, my daughter's overall reclusive nature and tendency to avoid conversations with her parental figures has, I believe, more to do now with the fact she's quickly approaching 14 years of age than it does with the fact she's autistic, but that doesn't mean I appreciate the conversations we *do* have any less. I still revel in any moment my daughter decides she'd like to be in my company.
It's actually been happening a lot, recently -- moments where my daughter just wants to hang out and talk with me. And it's very abnormal for A., not only because she's actively initiating interactions, but also because she's asking me questions and engaging in conversations that are about subjects other than Minecraft or Pokemon Original Characters or Jeff Dunham comedy skits. She's still talking about those subjects too, of course, but she's also augmenting the conversation flow with questions that are relevant, empathetic, and follow a more two-sided conversation style.
For example, last night, I'd already tucked A. into bed. I was in my own bedroom, putting away clothes, when A. came asking for me. I invited her in, and let her lay on the bed while I finished putting away clothes, and she chatted with me.
"So, do we have any plans for the summer?" she asked.
I told her about the plans as they were unfolding -- A.'s upcoming trip to Washington, D.C., with her grandmother, our trip to the beach at the end of the summer. She wanted to know why our vacation had to be so late in the summer, and I explained that it was really the only time I could get vacation.
"That's just cruel," she said, which amused me. I explained that I had to make sure I wasn't leaving work when something big was happening -- like a class or a project -- and that I also had to schedule around my boss and co-workers so that there would be enough people at the office to handle everything. We talked a little more -- about some summer workshop classes I'm trying to get her interested in taking, about how I really needed for her to be much more focused on school next year and take time to study for tests, which is something she used to be really good at but has fallen behind in this year.
"So, what's your favorite movie? I mean, comedy movie? Slapstick comedy movie?" It was funny that she kept qualifying her question, as if there were a specific answer she wanted me to give.
And, it was just a really, really nice little conversation -- even if she was just using it to stay up an extra ten minutes past her bedtime. But, we've been having a lot of little conversations like this, lately. I have learned that A. is no longer interested in going to the zoo, that she really hates that I have to work all summer and can't have a long summer vacation like she does, that she'd really like to go to the fair this year, and that she really wants to go to Dollywood Splash Country again. It helps me come up with a lot of little things that will probably make her very happy -- little ways to spend time with her throughout the summer, ways to make her feel like she really is going to have a real vacation between her 7th and 8th grade year. And it helps build that mother-daughter relationship -- helps her to understand she really can tell me how she feels about things and what she thinks about things, that first and foremost I am here to listen to her.
Besides all that, the conversations leave me feeling warm and fuzzy, giving me a feeling of relevance in my teenager's life. I'm glad that she still enjoys having conversations with me, that she still thinks it's "cool" to share things with her mom. And I will take that as long as I can get it.
In this entry from the archives, my daughter becomes obsessed with the idea of creating a perfect Mother's Day for me... in the middle of August.
August 30, 2006:
Tonight, my daughter became suddenly obsessed with the concept of Mother’s Day. She told me that she wanted to make me a big, delicious breakfast of chocolate milk, juice, cereal, bacon, eggs, and pancakes. I told her that was a beautiful thought, but Mother’s Day was in May. She laughed at this idea, as if I didn’t know the first thing about when holidays were supposed to be celebrated. Later, she drew me this picture of her serving me breakfast in bed.
[Click to see the picture of A. serving me breakfast in bed.]
And personally, I think she’s right. I think it really must be Mother’s Day. Or, at least, I’m much more excited about her wanting to do something for me at a random time when she is convinced a holiday should be happening than doing something for me just because the people at school and/or other family members tell her to. It makes it more special, somehow.
[Click to see another picture of A. hugging me.]
My daughter’s drawings become more detailed and full of expression by the day. And she’s still always wearing those rabbit ears. I’m very, very happy that I finally got my scanner to work again.
Happy Mother’s Day everyone.
My daughter teaches me so many important lessons, especially when I take a moment to pause, and listen.
This weekend, my daughter taught me a few important lessons in driving. It's amusing, because I'd had a dream Friday night that I was trying to teach A. how to drive, and then the rest of the weekend, she was, in reality, giving me these beautiful nuggets of wisdom that directly related to my perception and interaction with the road before me.
I haven't been feeling well for almost a week now. I've been recovering from strep throat, and then I was fighting off some sort of respiratory infection. My body apparently has a history of just shutting down somewhere around the beginning of May, and this year was no exception. At any rate, this meant that, Saturday night, it felt like I was coughing out a lung every five minutes. It was dark, and rainy, and we had to make the journey from Greene County to Knoxville -- a drive that generally takes around 2 hours to complete. I was absolutely dreading the drive home, when the rain pouring down coupled with my incessant cough and growing night-blindness.
We pulled out onto the highway, and I gave A. control of the music. She pulled up some of her favorite dub-step music on Spotify, and we skimmed puddles and standing water on the roads with the wipers whooshing back and forth across the windshield. A. turned to me, and explained how absolutely "epic" it was, to be listening to dub-step while driving in the rain at night. A. loves stormy, rainy, and overcast weather, and she loves the nighttime -- she doesn't like the sun, because it's much too bright for her. In this way, she's very much like her biological father, who always had the same disdain of light, and the same love of dreary weather. So, for A., this drive, which I'd been dreading, was, in a sense, the perfect road trip. She looked for new dub-step songs she hadn't heard before. She got excited when one of those songs seemed to sample a turret voice from the Portal video game. I watched as she swayed with the music, as the streetlights lit up her face, as she just completely and thoroughly enjoyed every small moment of that drive -- how it seemed to feed her spirit, how happy it made her. And it made me check myself, my own perspective -- why was I convinced this was going to be such a bad drive? I put all these preconceived notions onto the drive itself, and I hadn't even stopped to think what could be delightful -- and even epic -- about the drive. My daughter helped transform what would have been a highly negative experience into an incredibly positive one, and helped me rethink how my perspective might shape the reality around me.
Then, this morning, we were heading to McDonald's after church, and, again, it was raining, and I wasn't feeling great, and I got snappy about one of the goofy songs she was playing, because I was stressing out about driving in the rain.
"I'm just having a hard time driving with all these crazy people on the road," I snapped. A. started to cry, and I felt absolutely terrible. I comforted her, and apologized for getting snappy.
"How do you know they're crazy," she pointed out through her tears. "What if they're all just sick and feeling bad like you are?"
This statement really gave me pause -- for a couple of reasons. A. was genuinely distressed that I seemed aggravated with strangers with no just cause. She was really empathizing with those people, and she also directed *me* to empathize with those people, because she's absolutely right -- I have no idea what the story was behind the people who seemed to be driving erratically this morning. For all I knew, they'd all been suffering sore throats and terrible coughs, and they might be having a hard time focusing on driving, too. It was a real lesson in compassion, a wonderful reminder of the importance of living gently through my life. I apologized to A., and I thanked her for pointing this out to me, because she was absolutely right, and I needed to be more compassionate to the world around me this morning.
It's amazing, the sort of lessons one can learn from one's daughter, while driving in the rain.
A. wanders through the house, talking loudly to herself, performing skits in her head, sometimes even yelling and shouting the parts, using strange squeaky voices for the different characters in whatever playlet she is enacting. If you ask her what she's doing, she may say she's quoting something, or practicing voice acting, or she'll simply dismiss you with a gentle "never mind," as if she already knows there's no possible way you could understand what she's talking about. At other times, she'll dance Gangnam Style so ferociously that she'll shake the entire second floor of the house, and you're pretty certain she's going to stomp a hole straight through to the ceiling of the lower level. In other instances, she'll belt out the lyrics to her favorite songs as loudly as her voice will allow -- and anyone who knows my daughter understands just how loud that voice can get. Even in conversational speech, A. sometimes sounds like she's shouting at you.
And there are times when the loudness and the shrillness of some of A.'s "voice acting" feels like nails on a chalkboard to me. There are other times when the sheer repetitive nature of her quoting sounds a little disturbing.
But, when she's home, safe in her own territory, I let her do it anyway. When she's in her room, I give her free reign to pretty much be as loud as she wants to be, to reenact whatever skit or show she has going on in her head. When she's wandering the house doing chores, I let her have these loud and boisterous conversations with herself. Because this is the way my daughter stims.
And I firmly believe that my daughter's ability to have a safe place to stim has helped her feel a lot more comfortable in social situations, has allowed her to further develop connections with people, and has helped alleviate a great deal of her anxiety and discomfort with the world around her. I also believe the specific nature of her type of stimming -- reenacting conversations with herself -- has helped her practice conversational skills in general and has helped her better understand the nuances of social interactions.
It's given me the opportunity to work through teachable moments around being able to discern whether or not a specific behavior is appropriate for the situation. It's easy to do in the context of school, where the environment is very, very different from home, and A. has learned over the years that she is expected to behave an entirely different way from her teachers than she is expected to behave from her parents. Because she expects school to operate under a different set of rules, it's been relatively easy for me to explain that she shouldn't quote skits with swear words at school, for example. I've been able to branch off from there to demonstrate how certain people might find certain skits offensive, and how speaking in a shrill, loud voice can be very irritating in certain situations -- like when the family is gathered around the table for dinner, for example. It's been a great way to help A. learn how to navigate social cues and situational awareness, and while she still has a lot to learn in this arena, I'm constantly impressed with how well she does when she changes from one situation to another.
And, I could be wrong, but I can't help but wonder if part of the reason she's able to adapt so readily to these different situations is simply because she has an outlet to stim when she needs to do so. She understands the circumstances in which she is free to be as loud and boisterous as she wants, and she knows that the family will permit her to use that time and space in whatever way she needs. I imagine the freedom to stim gives her the outlet she needs to better orient herself to the sensory overload of everyday life. I'd like to think that learning situational awareness around stimming will not only make her more self-aware of her own "engine levels," but will also help her become more "in tune" with the needs and perceptions of people around her. I like to imagine that this may have something to do with her growing attachment to parents and grandparents, that it might have helped her feel comfortable enough to put an arm around one of her Religious Education teachers at church last Sunday.
But, maybe I'm completely wrong. I'm not a specialist or a scientist in this field, and I only have my own collection of circumstantial evidence which may, in truth, not mean anything at all. Even if letting her have time and space to stim doesn't actively help her situation, I still can't imagine what it could possibly hurt. And a shaking, loud house full of A.'s repertoire of zany, boisterous voices is a very small price to pay for the knowledge that, at least for that moment, she's completely happy, and completely at peace.
In this entry from the archives, A. and I wrap up our last days in Germany, and prepare to "return to English."
July 28th, 2006:
Well, I have about 36 hours left to spend in Germany. Despite the lack of air conditioning, I am really going to miss it. I will have to come back. It's just one of those places for me, like New York City. And here I have friends, and people I could count in my extended family.
A. lost a tooth this morning, which means that the German tooth fairy gets to visit her tonight and leave her German money. She seems excited about the concept. Today we wandered around Köln, visited the huge church and went shopping. I got books (again!) and long-needed combat boots. I actually went ahead and splurged toward Doc Martins, in hopes that I won't have to replace them in a year like I usually need to. I purchased them at this neat little shop called Desperado from this very sweet British guy, and I spent the rest of the afternoon skipping merrily down the cobblestone streets, squealing, "I bought honest-to-god real Doc Martins in Germany! From a British guy! And they're gonna last me the rest of my life! I'm so excited!" The rest of the shopping was spent getting little gifts and fulfilling requests. A. was less than impressed with the shopping, but she liked the church, and the big fountain.
Last night, around eight in the evening, Susanne decided that we should ask her boyfriend to babysit A. while she showed me as much of the night life of Aachen that she could manage in two hours. We went to about four bars, including the Wild Rover which was by far my favorite, and it was really nice, even if we did have to rush through it. It was my first experience bar-hopping, since I've never had the combination of live-in babysitter and tons of pubs within easy walking distance before. And the thing about Irish pubs in European countries is that they seem to usually be run by honest Irish people with Irish accents, or at least the Wild Rover was. When we got back to the apartment around ten-thirty, we all sat out on the balcony and shared tongue twisters in our respective native tongues. Susanne seemed most befuddled by Peter Piper.
Outside of that, the week has been quiet and lazy. Susanne and Tom both had to go back into work this week, so I've spent too much time reading and not enough time working on my thesis. I can't remember a time I've read so much just for the heck of it. It's been entirely too long.
Tomorrow there will be packing, and visiting Susanne's parents one last time, and going to a party at Susanne's cousin's place. Then Saturday morning, I'll be back on the plane for the States. Or, as A. so deftly describes, "then we'll go back to English." She's managed to learn Willkommen, Ja, and Nein, but I think that's as much as she's willing to budge.
It has been an incredible experience. It's amazing to me how different a culture can be from one's native one, and also the bizarre similarities. I'm going to miss the large windmills, the amazing public transit, all of the beautiful cafes, delicious Eiskaffee, punks with mohawks and brightly dyed hair everywhere, tattoos galore, bakeries with fresh bread on every corner, the collective obsessiveness with fußball, the blunt honesty of the German language, the amazing liberal attitude towards sex and alcohol, television channels that display a crackling fire all night long, a place where marriage is not an automatic expectation and cities smaller than Knoxville celebrate Christopher Street Day. I'm even going to miss bringing my own bags to the supermarket to bag my own groceries, being forced to recycle every single piece of trash, and not getting free refills at the restaurants. I've grown accustomed to the taste of mineral water and foods with a much lesser sugar content. And I've become quite used to allowing my daughter to play in all the public fountains.
But it will be nice to understand the conversations that go on around me again. And to see all the wonderful people in the States that I miss. And -- air conditioning! I'm sure I'll be in reverse culture shock my first couple of days back.
July 31st, 2006:
Susanne was right; the jet lag is much worse after traveling to the States than after traveling to Germany. I've felt tired and run-down for two days, but I can't manage to stay asleep more than six hours at a time.
As we descended toward the airport, A. and I could see the skyline of New York City out our window. I caught a glimpse of the Statue of Liberty, just a bare speck out on her island, as the airplane captain welcomed home any U.S. citizens on board.
Germany has left me seven pounds heavier, and golden, with calloused feet. I have never seen A. so excited to get back to the L. Our cat, having spent the duration of our trip with my mom, is also glad to be back; she keeps rolling around on everything, finding her long-missed perches throughout the apartment and napping luxuriously. In the meantime, I wander around my apartment like someone lost, touching things as if their memory were something far-off and distant, from a girl I no longer recognize as myself. I feel completely and irrevocably changed by my journey, and yet everything is here just where I left it, even the books I decided to leave behind at the last minute, in a neat stack beside my coffee table.
Things I hope I might have learned: the grace of humility, the importance of patience and endurance, the necessity of daily relaxation. The understanding that we are all much more than just a sum of our parts. The inherent beauty of drama. The knowledge that simple mistakes do not automatically herald the end of the world.
In the next three days, I need to work on my thesis, work on the GSE website, revamp my resume, start applying for jobs, and keep my eye out for possible apartments and houses for rent. I should probably also buy groceries and basic necessities, and do some reading.
Look at us, we're beautiful.
In this entry from the archives, as we continued our summer trip to Germany, A. and I explored many different cities, and she even made a fast friend despite the language barrier.
July 16th, 2006:
I'm totally behind in relating my adventures, so I don't imagine I will come anywhere close to doing the last week justice. You'll just have to settle for the condensed version, sorry. And we'll go in reverse chronological order to try to make it a little easier for everyone, especially myself.
Today: more of Aachen. Germans seem totally unimpressed with their own history, or at least the Germans I happen to be staying with. I purchased a "Concise and Colourful" book on the history of Aachen this afternoon for drie euros, and have spent many hours emerging from my room with "OMG I can't believe there's a Celtic tower that was built to honour the Celtic god Grannus!" or "Charlemagne made this city the center of his western empire? Really?" or "d00d! Jesus's swaddling clothes are among the holy relics in the shrine at the Aachen cathedral!" which are all met with surpressed giggles and disinterested shrugs. I am obviously much more interested in history than I ever wanted to believe.
This afternoon we met one of Susanne's old schoolfriends for coffee, and we had drinks at this marvelous cafe right beside a playground -- Bubel's Cafe. It's entirely new, and had the best iced coffee I've ever tasted. A. was especially fond of the swing. There was random shopping, and pizza, and me wandering around the dome of Aachen ooh-ing and ahh-ing a lot.
Friday: lazy day. I worked on my thesis and hung around the apartment. There was also lots of reading. I've gone through three books since my arrival here -- Rubyfruit Jungle by Rita Mae Brown (awesome), Winesburg, Ohio by Sherwood Anderson (less awesome), and I'm in the process of finishing up A Wild Sheep Chase by Haruki Murakami, which is absolutely fantastic. There was also a bit of taking A. to a park, which was nice.
Thursday: visited Monschau, a historical town in the Eifel mountain range of Germany. Beautiful, and awesome. I walked up a mountain to get a closer look at the remains of a tower. We also got to see the lake, and fun stuff like that.
Wednesday: visited Susanne's aunt and uncle in the Eifel. Beautiful garden, a dog much too obsessed with my crotch, board games, and barbeque. I learned how to say "I'm a valuable teacher" in German.
Sunday, Monday, Tuesday: The North Sea. We travelled to Noordwijk in the Netherlands and stayed a couple of nights on the beach. I underestimated the Northern sun and A. and I were both burned like lobsters -- we're still peeling from the experience. Was a lot of fun being burnt, though. We stayed in the water for hours -- no sharks, and the jellyfish are apparently docile in the North Sea. Apparently, everything is legal in the Netherlands, and there are many topless women on the beach because of this.
We had a dinner while we were staying at Noordwijk which was, in itself, worth the money I paid to make the trip across the Atlantic to come here. If you ever end up in Noordwijk, stop by Onder de Pannen and order the shrimp scampi with cheese that they bring to you in a cast-iron pot. Believe me, you'll thank me later.
July 20th, 2006:
A. may have made one of the fastest friends of her life with a boy a year older than her who doesn't speak a lick of English but can troubleshoot successfully and deftly knows his way around Windows XP's Task Manager. (I should probably add that the kid is the oldest child of a single father whose living room is littered with books on Linux Networking and securing DNS addresses in German.) At any rate, the two have been playing happily for hours now. He keeps talking to her in German, she keeps talking to him in English, but they don't seem to mind. They also spent a good hour of that time watching Asterix cartoons on his computer.
Needless to say, I am overcome by cuteness. There will be pictures and possibly video as soon as I am able.
Oh, and the rest of Berlin is nice, too.
July 23rd, 2006:
A. and A. watching Asterix cartoons on his computer.
Recently, it seems as if A. has matured a great deal on an emotional level. The other day, as we were pulling out of the driveway to go to school, she realized that she'd forgotten to pack her drawing notebook. In the past, such a realization would lead to a meltdown -- or, at the very least, high-pitched squealing -- and a desperate plea to let her go into the house and get it herself. On this particular day, she actually shrugged the entire incident off, and actually said, "Oh, well -- I'll get it later." She's reacted to changes in rules and routine with some distress, but not nearly the full-fledged meltdowns we were used to seeing there for a while. She's taking to redirection with much more grace. Yesterday, I told her I would grab McDonald's for her for dinner, but that I was not going to get her the usual Oreo McFlurry because I knew she would probably be getting that again this upcoming weekend. Instead of whining or complaining that I was trying to ruin her life, she instead just quoted Peanut, a Jeff Dunham character: "Alright, alright, ALRIGHT!" I'm extremely impressed with the overall development of her coping mechanisms lately.
On Sunday, we attended a birthday party of one of A.'s friends, J., whom we initially met through Autism Society of America's East Tennessee's Chapter's Friendship Club. There were a LOT of kids at the party, over an incredibly wide span of ages, both on and off the spectrum, playing elaborate Nerf Gun war games. A. didn't want to play in the games, and instead opted to be a "medic," helping teammates by giving them new colored flags when they lost the ones attached to their belts. Despite the games going on, the noise level, and the overall chaos, A. had a blast, and didn't seem to be affected by any of it. She made fast friends with both kids on and off the spectrum, happily exchanged quotes from Internet videos, spoke at great length about Minecraft, and ran around the park pretending that Herobrine was after her. She especially seemed to have a lot in common with an older aspie teen, who said she was "fun" and commented on her artwork: "This is some kind of brand of adorable that I just can't describe." It was wonderful to see her being so actively social in this setting. Afterwards, she told me how wonderful it was to spend time with people who shared her same interests, and she seemed really excited to have spent time with so many awesome peers that afternoon.
After the birthday party, we visited with my husband's family since we were having a dinner to celebrate my sister-in-law's birthday. A. kept to herself throughout most of the visit, and when we were heading home she explained that she was very tired. "It's just been a long day and we haven't been home at all where I can get comfortable," she said. I was incredibly impressed with the level of self-reflection she demonstrated by coming to that conclusion on her own. She was getting grumpy and a little sad, but not only did she know exactly what was wrong, she was also able to verbalize it perfectly.
I don't think we'll ever get to a place in our lives where A. doesn't continue to surprise and impress me every single day.
In the summer of 2006, I took my daughter to Germany to visit with my dear friend Susanne, who'd been with me when A. was born. We spent about six weeks exploring cities like Aachen, Cologne, and Berlin, and it was fascinating to watch A. adapt to an entirely new language and an entirely new culture. The next couple of From the Archives entries will reflect our adventures on this trip.
July 4th, 2006:
I would just like to state, for the record, that crossing the Atlantic was not nearly the terrifying experience I thought it would be, and that biergarten may well be the best word in the universe.
A. and I have arrived safe in Germany, and are slowly coming to consciousness after having spent the shortest night of our lives on an airplane. A., of course, seems to be faring much better with the lack of sleep than I am, or she's just stubborn enough to insist that when the sun is out, that means that waking should happen, while I am still convinced that sleeping is something that should happen all the time. I've also spent my time here thus far constantly ravished by hunger -- which is something I don't understand at all -- and thus have already consumed my first vegetarian German meal, in addition to my first "traditional" German meal of bratwurst and sourkraut (Susanne's parents seemed most amused at our purchase of "eine bratwurst" since I suppose most recipes call for two or more.) Also, the Bitburger bier is most excellent.
We're staying in a little city called Aachen with Susanne and her boyfriend, Tom. Their apartment is absolutely gorgeous -- beautiful, high ceilings, happy little pictures on the wall, stars and moons and planets everywhere. Their dining table is out on their small balcony which overlooks a courtyard garden full of some of the most interesting lawn furniture you might imagine (I find it rather charming, but Susanne finds it tacky as hell.) And Susanne has the largest library of anyone I've ever met, which is saying quite a lot considering that this list includes my mother, all my American friends, and a slew of English majors.
The language barrier is interesting. I find that I pick up on a lot more than I thought I would, listening to conversations, but I'm also hopelessly lost with it, and I feel rather ridiculous for not actually taking the time to learn more German before I came here. Typical American, I suppose. Luckily, I will have Susanne to translate for me most of the time. A. is less concerned about it than I am. Being in a different place with different people and a different language hasn't phased her nearly as much as I was afraid it might, but she is having a difficult time with the difference in food. Apparently, even the German versions of some of her daily staples (Cookie Crisp, Ovaltine, ketchup) taste much different from the American versions, and she has been less than enthusiastic about eating since we got here. It will just take some looking around and finding stuff she might actually like -- there's always spaghetti with no sauce! And as much as I normally despise McDonalds, I may end up eternally grateful for their shameless invasion of every country in the world. Chicken McNuggets are Chicken McNuggets, no matter where you are. And perhaps being here will help break her intense addiction to ketchup. I brought her vitamins, which she eats with no problem, so I'm not *too* worried.
Other impressions of Germany thus far: Initially, the 120 kilometers-per-hour speed limit on the Autobahn freaked me out, until I realized it was equivalent to 74 miles-per-hour, which is obviously very much the same as in the states. There are gigantic windmills everywhere, though Susanne says she has no idea where the energy generated from them goes. There is no air conditioning, and it's been extremely hot these past two days, but 90 degrees here is not nearly as bad as 90 degrees in Tennessee, due to the lack of humidity. It's supposed to storm on Thursday, which means it the temperature will cool off to more average temperatures after that -- 70s and 80s. Of course, all weather reports are in Celsius here, so the average is more like 25. And I may learn all of my German just from all the different words on the computer itself (i.e. "HTML ist in Ordnung", "Einträge per Telefon", und "Neue Seite".)
Ich bin Amerikanerin. I am not from your country. (The joke doesn't really hold up in my present context, I can't imagine why that is.)
Tonight, instead of fireworks, A. and I shall be joining a group of Germans at a biergarten or some other eating and drinking establishment to watch the Germany vs Italy World Cup match. Something tells me it might be a lot like dinner at Hooters on a Tennessee vs Alabama game night.
July 8th, 2006:
Tonight, the streets outside my window are full of cars honking, people shouting, and general drunken singing because the Germans beat Portugal in the World Cup match tonight. I have never seen a group of people so incredibly passionate about soccer, it's amazing.
Nor have I really seen so many people in such a small place, in general. On Saturdays, the streets of downtown Aachen are full of shoppers that pack into clothing stores, bookstores, and bakeries with this intense desire to purchase goods and services. Outside of the shops, there are organ grinders and jugglers on the cobblestone streets, small vendors of bratwurst sandwiches and bagels. The major bookstore in downtown Aachen is four stories high and has a wide selection of books in every language you can think of, and the entire city is speckled with these bizarrely decorated horse sculptures in different themes and costumes (we saw a Pippi Longstocking themed one today.) The horses remind me fondly of the bears that you find all around Knoxville, actually -- it's very much the same sort of thing. And the sixteen-year-old Devon would have found this place a goth-punk fashion paradise. (As it is, you better believe I'm going to invest in some nice combat boots before I come home, because at least you can *find* them here.) I'm convinced 5% of the population of Aachen sports some sort of mohawk.
Yesterday, we went to Bonn -- Susanne had a meeting with her professors and fellow doctorial students, so A., Susanne's father, and I went to the House of History museum, which completely amazed me. There was a small temporary exhibit on the History of Rock Music in Germany which was fun, and A. rather enjoyed that. But the greater part of the museum records the history of Germany from the end of World War II to present day. And it's just... incredible.
Outside of that, lots of amazing food, lots of good wine and beer. A. seems to be adapting more -- we've found her a few things to eat, and she's become highly attached to Susanne's parents. They even purchased her a little wading pool, so she's been spending a lot of time in the hot afternoons splashing about in there. She's a little off on her sleep schedule still, and she's not enjoying the lack of routine, but I'm trying to find ways to make it easier for her. Tomorrow we'll be heading for the beach in the Netherlands for a couple of days, which she is *extremely* excited about. That should be a lot of fun.
There are so many things my daughter does that complete surprise and delight me, but the evolution of her sense of humor and comedy is definitely one of the big ones.
A week or so ago, we were visiting with family, and for some reason, A. was inspired to stand in the kitchen delivering entire Jeff Dunham skits. She isn't a ventriloquist, but she does a wonderful job of changing her voice to represent different characters, and she did a faithful rendition of several of the skits. The entire family responded in genuine resounding laughter. As for myself, I quite literally laughed so hard that tears came into my eyes. My sister-in-law's boyfriend commented that A. was actually funnier than Jeff Dunham, in his opinion. It was random and delightful -- and, in my opinion, it took a lot of social acumen to pull it off.
Most of the time, A. is pretty centered on her obsessions with Deviant Art and Minecraft. She will happily discuss these two subjects at length with anyone who is willing to listen, but she often resists the introductions of other subjects, and she generally has difficulty recognizing social cues that reflect whether or not someone is actively engaged in a conversation about these subjects. A.'s interaction with family generally follows this pattern.
However, for whatever reason, on this particular day, A. defaulted to another interest of hers that she understood or guessed would engage people, and then put on a random comedic performance to make everybody laugh. I'm impressed that A. has such an incredible sense of comedic timing. Just a few years ago, A. really struggled with jokes, sarcasm, and any type of language or interaction that did not stick to literal expression and interpretations. For the longest time, the only type of comedy she really appreciated was slapstick, and she especially enjoyed old geniuses like Charlie Chaplin, Buster Keaton, and the Three Stooges who relied heavily on physical comedy and often times didn't use words at all. She always enjoyed comedy, however -- she's always enjoyed laughing, or making other people laugh -- so it makes sense that there has been an evolution over time in her understanding, appreciation, and delivery of comedy. Now her favorites include Monty Python and Jeff Dunham, and I know those will only continue to grow and develop as she does.
I think what impresses me the most about A.'s sense of comedic timing is that it's obvious it's not all entirely memorized. When she delivered Monty Python's "All Things Dull And Ugly" at our church's Easter service, she didn't simply sing the song the way that she'd heard on the YouTube video. Instead, she would shout out the last word in each verse in a funny voice, and she would mix and match spoken parts with singing in such a way that effectively broke up the song, emphasizing the more comedic parts, and she would also use hand motions to get a laugh. She choreographed this delivery entirely on her own, which demonstrated that not only has she memorized a great deal of comedic delivery, but that -- most importantly -- she's now processed how she can implement that delivery in new ways to create something uniquely funny. Since we have two services, A. had to deliver the Monty Python song twice, and I was impressed with how she decided to change a specific part in the second service to make the skit even funnier -- and it worked, since altering her voice at that particular point in the song really made the entire audience laugh.
My daughter is autistic, and one of the strengths that has historically been listed on her IEP is that she has such a great sense of humor. Over the years, she's developed that humor, and now I'd even suggest that she's quite the developing comedian. I know it was difficult for her to learn the nuances of comedy, because I watched her struggle with it for many years as she worked to master the art, and I would also be the first to say she has a long way to go. I find it interesting, however, because there is a pervasive belief about autism, that was especially common when A. was first diagnosed -- that autistics can't understand jokes, that autistics struggle with being creative in a social setting -- and that simply hasn't been my experience with my own daughter. And I know that she isn't alone -- that there are many comedians on the spectrum, including the recent contestant for Miss America who used stand-up comedy as her personal display of talent. It's a wonderful gift to have -- the ability to make others laugh -- and it's been a delight and a pleasure to watch A. evolve from a very serious and stoic baby to the young woman who is so free with laughter and silliness.
Just last night, when we were having dinner, A. was joking around, and being a little hyper because of it. When I asked her why she was in such a good mood, she simply said, "You know I have a jolly personality." And it's so very, very true.
In this entry from the archives, I share one of my favorite pictures of A. of all time. (Also, please be aware that this was long before I'd ever seen the "Don't Blink" episode of Doctor Who, so I didn't realize for many years how terrifying this picture could be, too.)
May 27, 2006:
A. nestles with a group of angels outside of the Bargain Salvage in Greeneville, TN, this morning.
Today is International Autism Awareness Day. Because of this, people are wearing blue, sharing posts on social media sites, and I follow a number of people who both celebrate the day by "lighting it up blue" as well as people who criticize the day for focusing on fear-based rhetoric and excluding actual autistic individuals from the conversation. As for myself, I like to use this day to focus on ways to promote Autism Acceptance, on ways to help society understand and support autistic individuals like my daughter, on ways to help the world celebrate the many different drumbeats to which so many of us dance. There's actually a great website to explain this perspective in more detail: Autism Acceptance Month. I highly encourage everyone to go to this site and learn a lot about the month of April from an autistic's point of view.
It occurs to me that in celebrating neurodiversity and my daughter's unique and amazing mindset, it might be best to actually talk to my daughter about this day, about what it represents, to see what *she* thinks about it, to listen to what *she* feels is important to the conversations about autism awareness and acceptance, to understand what *she* believes society needs to do in order to help my daughter and others like her better navigate the world around them. With this in mind, I tried to have a conversation with her on the subject earlier this morning.
Me: So, A. -- today is International Autism Awareness Day. Do you know what that is?
Me: What do you think the rest of the world needs to know about autism?
A: Autism's differences in fitting, interests, etc.
Me: What can society do to help?
A: I don't know.
Me: If you could change one thing about the world to make your life easier, what would you change, and how would that help?
A: People were kinder to autistic kids. I heard tragic deaths and I'd hate to see it happen to me.
Me: What do you wish I better understood about autism and about how your mind works?
A: Art, imagination, interests, etc.
For what it's worth, I think A. may have been more inclined to expand on her thoughts and ideas on this subject if she hadn't been extremely interested in showing me specific Jeff Dunham clips while we were trying to have this conversation.
At any rate, no matter how many blue lights you shine, no matter how many blog posts you write, no matter how many times you change your Facebook icon -- it's only going to go so far to promote awareness and acceptance. This morning, all of my coworkers came to work wearing blue to show their support for my daughter. It was an unexpected and touching gesture, but what I wanted to say to them was that I've already felt their awareness and acceptance -- every time they demonstrate patience and understanding when my daughter calls 17 times in a row when I'm in a meeting with them, every time they understand and pick up the slack when I have to rush to school to diffuse a situation, every time they encourage A. to share her artwork when I bring her to the office. The people I work with demonstrate that sort of awareness and acceptance every single day, and they are actively doing so many little things to help make my daughter's life better. And that's the sort of activism that autistic people and their families desperately need -- the kind of community that offers compassion and encouragement coupled with strong, concrete support every day of the year -- not only on April 2nd. I am fortunate to have that, and I am optimistic that such awareness and acceptance will continue to grow throughout our society as we engage in dialogue with each other on the subject of autism.
My suggestion for the world today? Listen to autistics. Listen to what they are saying. Listen to what they are *not* saying. The best way to raise awareness and acceptance is to put yourself in an autistic person's shoes, try to see the world through their eyes, and become aware of what they really do need from you -- and also perhaps what they need you to *stop* doing.
And speaking of seeing the world through an autistic person's eyes, check out A.'s Photo A Day Gallery that's being featured on Advance for Occupational Therapy Practitioners' website for the month of April.
If you've been following my blog for a while, you should know that A. has a history of difficulty in attending church. During the height of her difficulty, I actually kept her from attending church altogether for about a period of six months. At the time, we'd exhausted every tip, trick, technique, and methodology I could think of to help her adjust to the church environment, and it was still impossible to keep her behavior in check to a degree that would not disrupt the rest of the class. It times, I felt extremely discouraged. It was extremely important for me to A. to connect with a group of peers outside of school who could be a source of support as A. entered Middle School and High School. Since she dances to the beat of a different drummer, I thought it would be good for her to find these friendships at a church that is famous for being accepting and inclusive of everyone, and I dreamed that her peers would be able to look beyond her obsessive interests, her difficulty with conversations, and her tendency to close herself and find some way to connect with her beyond all of these difficulties, and A. would see our church as an important and safe place of refuge and relationship.
Instead, A. continued to struggle -- at first with behavior, and then with connection. And while I continued to drag her into Religious Education classes most Sunday mornings, she'd still complain about going, drag her feet about participating in class, and spend most of her time off to herself, avoiding the very peers I'd hoped she'd connect with, loathing anything having to do with the sanctuary or ritual in general.
This morning, on Easter Sunday, A. got up in front of the entire congregation and sang "All Things Dull and Ugly" by Monty Python in a most comedic fashion to be met by resounding applause. Not only did she do this, but she did this twice -- through two separate services -- and even sat happily through one of the services in its entirety, following along with the Order of Service like a road-map, and laughing enthusiastically at the minister's jokes during the homily.
And earlier this week, I was able to convince A. to join a group of individuals at my church as we attended a candlelight vigil demonstrating our commitment to standing on the side of love.
So... What happened?
In my opinion, a lot of things. Time and consistency always helps these situations, and A. has had the benefit of attending the same Religious Education class with most of the same peers and many of the same teachers for almost two years now. Even though she still struggles with staying on task, joining in activities, and general communication that does not center around her specific interests, I think that the entire experience in general has become a much more acceptable routine for her.
Additionally, the church has done an amazing job of really reaching out to A. and myself -- especially in recent months -- not only to help make church activities more accessible to A., but also in helping to engage A. in church activities by appealing to the things that interest her. For example, A. was approached to assist with the Sunday service this week because the reading was from Monty Python, which is one of A.'s main interest groups. Additionally, she's been invited to come watch some Monty Python during British Comedy Night at our church, so that she can interact more with other church members while watching and discussing one of her favorite things. Reaching out to an autistic individual in the frame of reference of their own interests is one of cornerstones of building relationships, and it warms my heart that, not only are these important steps being made, but that they also seem to be working.
In an earlier entry, I'd discussed A.'s difficulty in participating in the Children's Chapel activity. This entry got the attention of the leaders in our Religious Education community, and they reached out to us to see if there were ways we might be able to make these sessions a lot easier for A. to deal with. We're giving A. the Order of Service beforehand, so she can review what events will be happening during the Children's Chapel. We're giving A. the links to any videos they are watching in the service, so that way A. can be prepared for what is happening. We're also giving A. a place where she can sit with her back to the screen, a sort of sacred space where, as long as she is respectful about it, she can cover her ears and turn her back if she gets too overwhelmed in the space. While we haven't had the chance to test these accommodations yet (A. was sick with the flu at our last Children's Chapel meeting) I imagine that they will help greatly.
Honestly, more than anything, I have a feeling that, for A., just the fact that someone from the church came to A., sat down with her, and then talked to her about what *she* felt when she was attending the chapel, what *she* needed when she was there to make it easier on her, and then was willing to move forward to make those accommodations and then check up with her to make sure that would work -- I think there's a lot to be said about the knowledge that the community is there, listening -- ready and willing to do whatever they can to help, to make sure you feel included, and to make sure that feeling of community is accessible to you, too. I'm not even sure if she could verbalize that feeling, but it really seems as if a lot has changed for A. ever since she sat down and had that conversation. She seems to feel a lot more adjusted and at home at church, now.
It also doesn't hurt that she's made a couple of Minecraft-enthusiast friends among her peers, too. :-)
Still, words can't describe how good it feels to be a part of a spiritual community that is actively trying to help, that is reaching out with accessibility, and that is also engaging in the larger conversations about autism and Asperger's Syndrome. This weekend, flutist Paul McAuliffe will be performing a concert and hosting a conversation about autism and creative focus, and then he will be hosting a similar conversation at our Sunday services the following day. While I won't be able to make the concert, I'm looking forward to the performance and the conversation on Sunday morning, and I'm so very grateful that my daughter belongs to such a supportive community, where these important conversations are happening and such differing and unique perspectives are being represented and explored.
I am grateful to be a part of a spiritual community that demonstrates to me, every week, that love truly is the spirit of our church.
In this entry from the archives, I'm amused by the way that strangers interpret A.'s obsessions and conversations, specifically when she refers to video games with which they are unfamiliar.
May 22nd, 2006:
Whenever A. gets obsessed with something, it becomes her opening topic of conversation for any and all strangers she happens across. For a while, it was Teenage Mutant Ninja Turtles; she would walk up to people in the grocery store and ask them, "Do you know about Ninja Turtles?" to which most people would reply, "Yes, I love them!" and that was cool.
Now, however, A.'s obsession of choice is the video game, Katamari Damacy. As such, she goes up to complete strangers, and asks, "Do you know about the King of All Cosmos?"
Katamari Damacy, of course, is not nearly as popular as the Teenage Mutant Ninja Turtles; furthermore, since we live right in the middle of the Bible Belt, many individuals she poses this question to assume that she is speaking about a different Cosmic King altogether. They smile sweetly, answer, "Yes, I know all about Him!" and beam at me in pride for raising my child with Strong Family Values as they comment on how cute my daughter is.
Little do they know that the King of All Cosmos in A.'s mind is an egotistical, sadistic lush who spends his free time knocking the stars from the sky and inflicting psychological torture upon his only son.