This past week was a rough one. I was working long hours each day, and A. was having a crisis at her school. One of her good friends, E., stopped having anything to do with her. I'm still not sure what happened. As much as I can gather, other students have started a rumor that A. is, in fact, NOT autistic, and it seems like E. might believe these rumors, and is upset and stressed about the idea that A. may have lied to her. Whatever the reason, A. has lost a friend, and she feels pretty devastated about it.
When she called me sobbing on Friday, I decided to allow her to leave school early. My amazing mother-in-law picked her up, brought her home, and hung out with her for a while. She told A. to try to focus on happy things in-between the feelings of sadness.
I was able to leave work a little early, so A. and I went shopping, and then we went out for ice cream. As she talked to me about the situation at school, I was really impressed by her maturity. She said she was very sad about losing the friendship, but that she had to accept it. She didn't seem to be angry at all - just hurt and confused.
As we sat and ate our ice cream, A. opened up a little. She told me that she was really lucky to have me as a mother. I thought she was going to say this was because I'd let her leave school early and was getting her ice cream before dinner, but she didn't even mention it. She told me I'd taught her how to be mature and optimistic. It was humbling to be on the receiving end of such gratitude, and I responded in kind - that I was grateful that she was my daughter because she was so compassionate, thoughtful, creative, and fun to be around. We finished our ice cream and went home, both feeling much better.
It was a very sweet and touching end to a rather emotionally exhausting week.
Recently, A. was a guest for my friend Elle’s podcast: Into It. True to the overall theme, this episode focused on one of A.’s very favorite subjects: Pokemon.
I’ve mentioned Elle on this podcast before. A. is her goddaughter, and she’s been a close friend of the family for decades. I think that was part of what made A.’s presence on this podcast episode so successful - the level of comfort that already exists between the two, paired with Elle’s ability to mine A.’s conversation for the focus points and important themes. Elle was a gracious host, restating main ideas and asking good questions, allowing A. to be expressive without totally derailing the episode.
And it worked. A.’s autism is never mentioned, and while I can hear the echolalia in her vocal cadence, it is blended with the enthusiasm and passion of a young person in love with the topic she’s discussing. She can also be very witty, making jokes and adding humorous turns of phrases that are designed to entertain. When she talks about the Pokémon Tyrantrum, for example, she says, “It’s a frickin’ T. Rex. What more could a person love in life?”
And even though A. is the youngest guest that’s ever been featured on Into It, she still carries herself with more maturity than I would have expected for her years, and I can believe when listening to her speak on this episode that she truly is about to learn to drive a car, go to prom, and start applying for college.
Not to mention, after listening to this episode, I think I finally have a true understanding of this complicated universe of Pokémon – which, of course, is really the whole point of this podcast.
Check out the Into It podcast and A.'s amazing interview.
You know how they always say that, when your children grow up into teenagers, they will be just like you? I must confess, when it comes to A., this is absolutely true.
I'm blessed in a way, because I happened to be a very well-behaved teenager. I minded my mom, my grandparents, and my teachers, and I worked hard to be a good student. However, I also hated the bureaucracy of the school system, the idea of authority in general, and anything that everyone else loved that seemed "mainstream" to me. I dressed in black, I hid under my headphones, and I spent my time writing pen-pals who lived all over the world, creating stories and poems out of the intricate universe in my head.
Likewise, my daughter is a well-behaved teenager. She works hard every day to listen to the teachers and do well in her classes. She complains, however, about rules she finds ridiculous, or peers who seem annoying, and if something is "mainstream," she wants no part of it. She doesn't dress in black, but she's constantly plugged into ear buds, and she spends her time chatting on the Internet with friends who live all over the world, drawing stories and digital artwork out of the intricate universe she's created.
Recently, I found a letter I'd written to one of my old pen pals. In that letter, I was complaining about how much I hated school - how annoying it was to have to spend my time learning useless things when I would rather be listening to music and writing letters to my friends. I also complained that "I haven't had a good ten hours of sleep in DAYS!" I laughed as I glanced at the clock, noted that it was almost one in the afternoon, and the teenager was still bundled underneath covers. That apple does not fall very far from this tree.
And I would not have it any other way.
A couple of weeks ago, A. started arriving home from school with various affirmations written all over her body. These affirmations proclaimed such positive thoughts as, “You are beautiful just the way you are!” and “You are loved,” and — my personal favorite — “Everyone is a composer of their own work.” The messages were written in black ink, in A.’s own handwriting, and they were a strange, much more positive echo of messages I had written on my own body when I was in high school, so very many years ago.
When I asked her about it, A. explained that she and one of her friends at school had started doing it in response to other classmates who write negative things on their body. A. explained that many classmates not only write negative things, but will also cut themselves, and cause themselves harm. A. expressed concern for these classmates, and worried that they might actually kill themselves. She explained that she wanted them to know that things will work out, and that people do love and care about them — and that they deserve to be happy.
It was such a gentle, touching demonstration of empathy that I immediately wanted to share it with people. A. was embarrassed by this idea, even though I eventually convinced her to let me do so. This told me that she wasn’t doing it to get attention — that, in truth, she wanted to express her love and support of people who might be going through dark times. And I understand that my daughter is not alone — there are many teens expressing similar sentiments in a similar fashion all around the globe. It's such a sweet idea, and a much needed sentiment in a world where more and more teenagers feel overwhelmed and hopeless.
Yesterday, April 2, was World Autism Awareness Day. Many people all over the globe lit things up in blue, shared blog posts, and donated money to various organizations in order to promote autism awareness and increase visibility for the condition. I personally know some individuals who participated in this autism awareness campaign, and I can tell you that, without a doubt, these individuals are doing what they believe is right, and are attempting to help autistic individuals in whatever way they can. In short, their hearts are in the right places.
Other people will be focusing on autism acceptance, instead. Many autism advocates and autistic adults are pleading for the world to move from a state of awareness into active acceptance. They explain that Autism Awareness campaigns tend to paint a picture of autism as a condition that needs to be fixed, that requires a cure, or that devastates families and creates hardships. What these individuals will tell you is that we need to create a shift in our culture from focusing on curing and changing autistic individuals to building networks of support and assistance to truly help autistic people throughout all stages of their lives.
I'm not here to take a side, to publicly lambaste certain organizations, or to argue anyone's case. A. didn't even know there was anything special about April 2 -- her biggest concern yesterday was the aftermath of April Fool's Day, because the chaos and uncertainty of the day was very difficult for her to navigate. But as she grows closer to adulthood, I know that I hope for a society that is both aware of her needs and accepting of her personality. It makes sense to me that people are still celebrating autism awareness, if for no other reason than the world needs to be aware that we should accept autistic people as part of the inherent and amazing diversity of the human race.
Whenever A. has a holiday from school, she always asks what we're going to do -- what we have planned. Generally, it's not much -- maybe dinner and a movie, or a stop at our favorite pizza restaurant. For this year's spring break, however, I took a couple days off from work and built an entire itinerary of mother-daughter activities to help A. know just how much I value the time I spend with her.
These activities included some old standbys -- eating at A.'s favorite restaurants, wandering around downtown Knoxville. They also included some practical necessities, like visiting the bank and buying new clothes. She got to experience several "firsts" during our excursions -- eating gelato, getting a massage, using a steam room. I also shared some of my favorite places with her, including Magpie's Bakery and the Knoxville Museum of Art.
In order to help make a packed agenda palatable for A., I created a schedule and we stuck to it. I would review the order of events with A. several times each day. I created "sensory breaks" throughout the day -- deep-pressure massage, swimming, time for A. to plug into her headphones for a while. And I would let her "stim" when she needed, whether that meant singing to herself in department stores or flapping her arms while looking at art. This kept her stress levels down, even while engaging in new activities and spending a great deal of time socially interacting with me.
It was a wonderful way to spend a couple of days of vacation -- having adventures with the eldest, free from the distraction of work, computers, and other family members. Every once in a while, I think A. really needs time like that. Truth be told, I really need that time with her too.
For those of us who love and care for children on the spectrum, the IEP becomes a source of great joy and incredible anxiety. Talk to any parent of an autistic child the day before an IEP meeting, and no matter how many times they've attended them, or how often such meetings have gone well, they will almost always express a sense of nervousness and worry. I can definitely say the same. And IEP meetings have historically gone really well for me and for A. Even the meeting where I was most anxious -- the one where they recommended A. go into the CDC classroom -- I was only ever met with individuals who wanted to support, assist, and help my daughter. As I understand it, we've been one of the fortunate families in this regard.
Even given that fact, the IEP is generally a source of anxiety for me. The meeting this afternoon at A.'s new high school was no different. I think I'm always worried that I'll become blindsided by something unexpected -- that even though I think things are generally going well, and even though I think she's making great progress, I worry that something didn't get fully communicated, that I'm going to be unpleasantly surprised -- despite the fact that, generally speaking, the opposite usually happens.
This afternoon, A. actually attended the IEP with me. I'm not sure if they would have included her in the meeting anyway, or if they did so because I called and left a voicemail requesting that she participate (and, hopefully, begin learning how to advocate for herself). But either way, they called her to be a part of the team today -- and it really changed the way I saw the entire process. In the past, the meeting has always been about making sure there are systems and safeguards in place to help assist A. at school -- to protect her, and to help her meet her goals.
With A. in attendance, the whole purpose of the meeting shifted for me. Now, it's about me educating her on what sort of services are available to her, and it's about me spending more time listening to what issues she has, and what she thinks she needs. It becomes a much larger team effort - the teachers make suggestions on what they think A. needs to work on, and A. contributes with what her aspirations are and what worries her the most. It's no longer just about me trying to interpret and play her translator and ambassador to the world. It's the striking realization that, very soon now, A. will be in a position where she needs to interface directly with that world, and she needs a lot more tools to be equipped to do so when that time comes.
Today's IEP meeting was a lesson in the fact that I need to listen to my eldest more often and extend a greater degree of trust in her self-reliance skills. I've been pestering her almost every day so far this semester, asking how things are going at school, and she's been telling me, "Everything's fine!" At the IEP meeting today, I found out that, indeed, everything truly is fine
She's been making a lot of progress from the previous semester in self-awareness and emotional maturity, and she's passing all of her classes. (I say "passing" -- she's making a high B in Algebra, and an A in her English class). Today's meeting was also a lesson that I can trust this school to make the right sorts of calls on-the-fly when A. does require additional assistance. I'd been worried about her gym class, because gym is always challenging, but as I hadn't heard anything negative, I guessed things must be going okay.
The school made the call to pair her with a teaching assistant for gym class so she gets that extra one-on-one attention in this challenging sensory environment, which has been working out great. They also suggested that we make the space in her schedule next semester for a "Life Skills" class to work on some basic social and vocational needs, and I could not agree more. She still has a very difficult time interacting with others or working in groups, so having a space where she could practice these skills would go great lengths into helping her overall progress.
It's interesting, because whenever I ask about why she doesn't make more friends, she complains that no one else shares the same interests as her. What I want to do is tell her that interests don't really matter, that she can make friends with people who aren't exactly like her. But when I stop and think about how obsessed she gets with her special interests, and how little patience she has for topics that are outside that sphere, it's like I have to remember all over again (right, autism!) and change "my" way of thinking about these topics.
Today's meeting was also a lesson in just how much I need to teach A. about what life will be like for her in the years to come. She's so unaware of the supports that are in place for her, of the organizations we've reached out to for assistance, of places she can turn to for help when she's an adult. She is very nervous about the idea of growing up and moving out on her own, especially since she isn't fully aware of all the small things I do to help her, and she hasn't learned to pick up those skills as part of her own self-care.
That being said, some things have happened organically -- she's a lot more "in tune" with when she is overloaded or needs to self-regulate. The IEP team said they were impressed with just how well she advocates for herself in that regard -- she knows when she needs to leave the room or go to a safe quiet space for a while to adjust. She also knows what sorts of things trigger those issues -- when the schedule changes, or when "rules change." And I'm comforted by the fact that she's made a "lot" of progress this year, and that we have a few more years to work with this and get her prepared for the road ahead. I'm also comforted by the fact that, even though she really seems to dislike school at times, she has a strong desire to go on to college.
I also learned that, in addition to wanting to create video game concept art, A. wants to be a writer. When I asked her to clarify, she said she wanted to write stories, and works of fiction.
"Like me?" I asked.
"Where do you think I got the talent from?" she said.
Today's IEP meeting may have been the best one I've ever attended. Not because anything earth-shattering occurred with the services that were put in place, or the paperwork that was filled out, or even with the teachers and educators who were in attendance. It was the best one because I got to share it directly with A. I got to see it through her eyes, and I got to help her start making plans for her own future.
"Blackbird singing in the dead of night / Take these broken wings and learn to fly / All your life / You were only waiting for this moment to arise." ~ The Beatles
So, there was a very big piece of news that happened several months ago that I never got around to sharing. Life has been, as I've mentioned several times over again, extremely busy as of late, so I've been terribly delinquent in updating my blog, which means I've missed some of the "big stuff." It's definitely well past time for me to catch up.
On November 18, 2014, Thomas legally adopted A., so now she's officially an Alley. It's a process we'd been working on for the greater part of the year. With the baby on the way, I realized that A. was going to be the only member of the family who didn't share the Alley last name. I was already worried that the arrival of a new member of the family might make her feel ostracized and out of place, so I thought the adoption might help her feel more included in the process. I was also hoping she could start high school empowered with her new name, which I hoped would help her transition.
Even though we'd only been working on the logistics of the adoption in 2014, it was a process that started long before this year. It was a process that included reaching out to A.'s biological father and his family, letting them know what we wanted to do, and making sure they understood that they would always have a role in A.'s life. It was a process that included Thomas reaching out to A. after our wedding ceremony, giving her the gift of a necklace, and letting her know he was always going to be there for her, too.
It was a process that included Thomas assisting with afternoons of homework drama, weathering many meltdowns, creating new foods in the hopes A. might actually eat them, taking A. on adventures and excursions, being an incredible stepfather and a caring and devoted parental unit. And it was a process that, quite honestly, probably began more than five years ago, at that fateful "Boomsday" experience when Thomas carried A. on his back for several blocks uphill in downtown Knoxville and decided at that point he wanted to ask me to marry him. A. and I were always a package deal, and Thomas fell in love with the concept of being a father just as much as he did being my husband.
Despite the fact that Thomas knew he wanted to adopt A. even before we were married, the process was long, involved, and expensive. It took me years to try to find a lawyer before I finally turned to a friend of the family for help and assistance. Once we got the process rolling, it seemed like every step along the way demanded paperwork upon more paperwork, and waiting period upon waiting period. The actual "court date" itself was the least complicated part of the entire journey. We showed up at the judge's chambers, answered a few very simple questions, and then made our way with our signed and certified documents to submit an application for an updated birth certificate -- one that lists Thomas as the father, and A.'s last name as Alley.
It was interesting, because A. hasn't really acted like any of this was "that" big a deal. She wanted to do it because she wanted to feel like she was, legally, on the same playing field as her younger sister, and she definitely wanted her last name to be "Alley." Outside of that, however, she didn't seem to be too terribly excited about the process. She was on board, but it didn't strike me as something she really deeply cared about at all.
This just goes to show how profoundly wrong I can be when I read her sometimes. After our discussion with the judge, I wanted to get a "selfie" of the three of at the courthouse, just something small to document such a tremendously momentous occasion. A. doesn't generally like having pictures taken of her -- she tends to make faces, or at least turn her smile into a smirk. She has difficulty taking them seriously, or giving a genuine smile. After I looked at the picture I took of the three of us, I was absolutely awestruck by the look on her face - just how genuinely happy, pleased, and excited she looked. The whole thing obviously meant a whole lot more to her than I'd previously realized.
So, that's the story of how A. officially became an Alley, even if the telling of it is over three months late.
January is always a difficult and busy month for me. It's the month that falls right before our annual managers' conference at work, and because of that, I'm always working long hours, bringing work home, and just generally trying to Accomplish All The Things In The World. This busyness has been compounded by the fact that there is now a seven-month-old to care for, so it doesn't give me a whole lot of time to spend quality moments with the eldest.
Because of that, we make the most of the time we do have together. One of the ways we do this is by spending a lot of time bonding together in the car. Whenever I drive A. somewhere, she always makes a point to play music that we both can enjoy and sing along to - whether that's Weird Al, Queen, or old eighties songs - she always picks songs I will enjoy, too. So we sing together. Sometimes, we even do mini dance parties in the car.
We started this when A. started listening to "Safety Dance" as one of her regular songs. A. had her own version of what she interpreted the dance should look like, alternating bending her forearms at the elbows in an almost robotic manner to the music. I thought this was amusing, so I came up with my own version. And then I started adding other dances, like the "muppet dance," where I bob my head as if I'm a character of Sesame Street and swing one hand from side to side as if it were attached to a pole and was being manipulated by puppeteers. But A.'s favorite dance is the once I created for the 1980's song "Down Under," where I bend my hands over as if they were kangaroo paws and bounce up and down from side to side to the music. When this song comes on, A. will actually do the dance with me -- which I imagine must be pretty hilarious to watch for anyone who happens to catch us at a red light.It's a small thing, really, but it's a wonderful way to spend time with my eldest daughter. It is a way for her to know I value our time together, and that I enjoy spending time with her so very much. Now, I just need to come up with more reasons as to why we need to travel places together. I could definitely use more impromptu dance parties in my life, even if they are contained to the inside of a Nissan Cube.
I think A. was more excited about this Christmas than she has been in years. I'm not entirely sure what exactly gave her such a dose of Christmas cheer. Maybe it was the fact that I enlisted her to help me play Santa Claus for the rest of the family. Maybe it's because she's in a relationship this year. Maybe she's more excited about having a little sister to share these things with than she lets on. Or maybe she was just in that sort of mood, really ready to have a wonderful Christmastime. Whatever the reason, I got to see a lot of my eldest daughter this holiday season, and I could not have been happier about that fact.
I took A. downtown the weekend before Christmas to get her hair cut and to go Christmas shopping. It was just the two of us, and A. kept remembering times in years past when we'd go downtown together to see free concerts in the park, or to go ice skating. She loved seeing all the Christmas decorations downtown, and seemed to really enjoy looking at things in the stores. We also went to a local restaurant for a pizza dinner. I think these Mommy-daughter dates have always been important to us, but I think in some respects they are even more important now. It's fun to do things together where I'm not constantly distracted by a baby, and I know A. needs that one-on-one attention, too. Later that afternoon, we actually all went to the mall together as a family, which was a pretty interesting outing, though I must say it really wasn't too stressful. There was a band playing Christmas music in the mall, and A. really enjoyed listening to them -- she said they reminded her of the band at the beginning of a Christmas Story. The next day, we took a lot of Christmas pictures of the family, and I got some wonderful pictures of A. and her little sister, with which I plan on flooding my office as soon as I get some new frames.
My mother came up early on Christmas Eve, and the two of them set to the annual creation and decoration of the gingerbread house, a tradition that A. looks forward to every year. We also baked and decorated cookies, and A. got to continue her Ludwig-themed obsession by decorating a cookie like Ludwig and then eating it. A little later, we went over my husband's parents' house, where A. helped make chicken and dumplings and managed to endure the high-pitched squealing of a young toddler cousin. (I tried to help as I could, by getting her earbuds and placing them in her ears to try to help cancel out the noise.) After dinner, we opened presents, and A. even joined us to watch a little of her favorite comedian, Jeff Dunham, in his Christmas special. After we went back to the house, A. unleashed her big surprise -- she dressed up like Santa Claus, came downstairs with a booming "Ho, Ho Ho!" and took Kes on her lap, asking her what she wanted for Christmas, promising her that she would get something awesome in her stocking later that night. It was probably one of the most adorable things I'd ever seen in my life, and both of the girls had a blast with it. Afterwards, we watched Rudolf the Red-Nosed Reindeer, and A. was adamant about everyone getting to bed early enough so Santa could come visit.
The next morning, A. was up at the crack of dawn. I can't remember the last time she woke up before the rest of the house on Christmas, and it was especially impressive that she managed to beat her baby sister out of bed! She woke up her grandmother, and then she came into our bedroom and woke up both myself and Thomas. Then I had her come with me to wake up Kes, and once we were all awake and downstairs, we started our Christmas.
There just seemed to be such a change in A. this year. She went through things a little more carefully. She actually read the tags on the presents. She just seemed genuinely excited about everything. She also took part in some of the good-natured holiday heckling that happens each year -- one of her gifts for Thomas was a Monty Python mug, and A. wrote "Homer" on the box (a reference a Simpsons episode.) She also gave us some pretty hilarious classic moments, like her response to her Big Santa Gift which was a new computer. "But my old computer works fine," she said, and Thomas explained that this one would work even better and faster. "Well, I'll let you know when my computer starts having problems," was her response. She really did not want to change to the new computer! Her favorite present this year was the Super Smash Brothers game for the wii U, and she spent the rest of Christmas day playing the game, sometimes asking other family members to play with her. Eventually, she began to watch the Polar Express like she does almost every year, but she decided to cut it short -- she had not chatted with online with her friends in a couple of days, and she really wanted to be able to do that for a little while. I think A.'s little sister was excited to be in the same room as her big sister for the entire day -- it's probably the most she's seen of her sister at one time since she was born!
Needless to say, it was an amazing, happy, incredible Christmas. It very well may have been the Best Christmas Ever. And I was so very grateful and so very happy to be able to spend it with such an amazing family, and such an incredible daughter. As the year comes to a close, our hearts are definitely full of so much love.
It's still sometimes a little baffling to me that Halloween - a day that used to be full of struggles, conflict, and meltdowns just a few years ago - has become A.'s favorite holiday. The entire month of October has become a sort of Halloween season. A. starts creating playlists, wanting to watch scary movies, and planning the details of her costuming weeks in advance. This year, A. wanted to have a "Halloween week," where we found something fun and Halloween-y to do each day leading up to Halloween.
Since we have an infant in the house, everything is a little more of a struggle, but I've also committed to doing everything in my power to make sure A. feels special, too. The week before Halloween was filled with activities. We participated in a local event hosted by a group called Artistic Spectrum that invited autistic kids of all ages to the park to paint pumpkins. A. painted several pumpkins with her favorite Mario character, Ludwig von Koopa. We decorated the house for Halloween. We carved Jack-o-Lanterns. (Again, A. kept with the Ludwig theme, and actually did a very wonderful job carving her own pumpkin this year.) We participated at the Trunk-or-Treat at our church. We watched Nightmare on Elm Street II, since A. has a fascination with Freddy Krueger. And, finally, we kicked off our Halloween evening.
I've created a sort of tradition at our house each Halloween. We live in an awesome neighborhood that really gets in to the Halloween spirit each year, and the subdivision is really perfect for trick-or-treating. For the past couple of years, I've invited friends and family to stop in, visit, and take their kids trick-or-treating in our neighborhood. Thomas's parents usually join us (and usually provide all of the food, because they are awesome like that) and the house is filled with laughter and antics and kids running around eating all of the candy in the world. There's also the added benefit of sharing the responsibility of candy distribution, which means that whoever is closest to the door when the trick-or-treaters arrive gets to hand out the treats.
Despite the loudness and chaos, A. has come to really enjoy these Halloween parties. This year, A. hit the streets early with a group of her friends for trick-or-treating, and they roamed the entire neighborhood together until the rain, wind, and bad weather drove them back inside. (By that time, A. was completely drenched and freezing.) When she returned, instead of hiding herself away in her room, she stayed downstairs with the rest of us, performing impromptu dance moves, and watching Hocus Pocus (A. had put together a costume to resemble Sarah Sanderson from the film.) While the weather did put a damper on the evening, it was still a really lovely Halloween, and A. seemed to have a blast - especially since she was able to allow her favorite character to play such a prominent role in all of her shenanigans. It was definitely a very Ludwig Halloween!
One afternoon, A. brought home a small flyer that one of her teachers had given her at school. It was an advertisement for a new East Tennessee Renaissance Festival that was beginning to get its legs in the region. The festival would take place in Harriman, about an hour west of us. And while the grand opening of the festival wouldn't happen until May 2015, the organization was planning on "sneak peak" one weekend in October. Since we didn't have anything planned, we decided to take A. to go check it out.
Quite honestly, I was worried that A. was going to be disappointed. The last Renaissance Festival we went to was the giant one that happens in North Carolina every year, a place that has permanent structures, tons of funding, and has been going on annually for 20 years. Since this local Renaissance Festival was still in its infancy, and the ticket prices were a lot cheaper, I guessed it would be a production on a much smaller scale. I wondered if A. would be expecting something bigger, and if she'd be comparing the two in her head.
When we arrived, it was quickly obvious that I was correct in my assumption - this festival was definitely still getting itself together. The festival itself was in a large field with few permanent structures built. It wasn't very crowded, so that was a relief, and the entire festival was set up in a large, wide circle. There were a couple of stages, and a couple of areas beneath tents that served as "pubs" or other public areas. There were not very many vendors, and the food offerings were not very elaborate. There were, however, tons of people in costume, and there was entertainment at every stage, as well as people who would randomly break out into some sort of activity in the public areas. (Thomas and I witnessed a group of people who gathered bystanders to engage in a sort of medieval version of speed dating, in order to "teach the Prince" (who was a little 10-year-old boy dressed in medieval garb) "about relationships." (It was amusing to watch.)
Despite the fact that the offerings were relatively meager, A. had an AMAZING time. She wandered around independently from stage to stage, and I'm pretty sure she saw every routine in the arena twice. She sang and danced with the Celtic band, she laughed at the improv groups, and she took hours of video on her iPhone of the different acting troupes. She told me that they all reminded her of Monty Python, which was a pretty stellar (if generous) review.
A., of course, dressed up in costume for the event. She desperately wanted to revisit her Tim the Enchanter character, but we could not find her head-piece or the black cloak she wore when she portrayed the character a year ago. She did, however, have a black, medieval-looking dress from an old Halloween costume, and an elaborate feathered mask, so I suggested she dress up in that outfit, and she seemed very comfortable. She was outside, there were still a few stray yellow jackets, and there was still a great deal of walking involved in the outing, but she had a blast anyway - a true measure of a successful experiment. We'll definitely be going back to visit the festival in May for its Grand Opening. Even if it doesn't get any bigger or more established, A. will still have an amazing time, and that's good enough of a reason for me to attend.
I'm not sure why I've been thinking back on the visit to Dr. William Allen that resulted in a diagnosis of high-functioning autism for my eldest daughter. Maybe because I've recently referred his services to friends who have questions about their own children's developmental delays. Maybe because I recently discovered he's on the Board for a local organization called Artistic Spectrum that I just discovered and have fallen in love with. Maybe it's because A. has an intake appointment with the same behavioral health center he's involved with in order to join a high school social therapy group. Whatever the reason, I've been thinking back to that morning so many years ago, to the battery of tests, to the questions and observations, and realizing just how much I learned in such a short amount of time, and how it has shaped my parenting style ever since.
I know I've written about that particular visit before - about how she spun around in circles in the waiting room for almost an hour before we were called back, about how Dr. Allen started making notes on his clipboard before we even left the waiting room - but I've recently been thinking about how much I learned while they were testing her for this diagnosis, and how much I still put those basic principles to work in my parenting style, even to this very day.
Dr. Allen was an advocate of Discrete Trial Training, and that was the way he ran his evaluation session. To break this down for anyone not familiar with Discrete Trials, you present a task for a child, get the child to respond, reward completion of the task, and then provide a break. For Dr. Allen's sessions with A., this involved explaining the problem simply ("Touch the picture of the dog"), waiting for her to respond (she would either touch the picture, or Dr. Allen would use hand-over-hand to get her to succeed), praise ("Good job"), and then a "sensory break" (she could get up from the table and engage in one of a number of sensory stations that were set up around the office). It was incredible to me, because Dr. Allen was able to keep A. on task and get her to demonstrate her skill and ability level so much more effectively than anyone else had managed to do up to that point.
I don't know if this was built into the Discrete Trial method, or if this was just Dr. Allen's individual style, but he did a couple of things that have always stuck with me. One of those was the fact that he would start with something relatively simple and work his way up to more complex tasks. He would "back up" if the task was initially too difficult or confusing. For example, if it was just rewarding A. for sitting in the chair for a minute, he'd "back up" the instruction to "sit in the chair," and then immediately reward her to get her to understand the cause and effect paradigm that he was putting into place during their session. The other thing was that he would continue to push her to do things and add to their complexity until she started to get uncomfortable, and he would always push just *one more time* to really challenge her comfort zone. He was really adept at this - he would never push her to the point of really getting upset or going into a meltdown, but he would continue to push her to focus on the task until she just began to get squirmy, fussy, or aggravated - and then he would make sure she had a success, even if he had to do hand-over-hand to get her to complete a task - so she would get the reward for the effort and could have a sensory break.
I've used similar trials in various ways throughout A.'s life, and I notice that I continue to follow that methodology to a lesser degree even now. When she has struggles at school or tasks at home, I always try to set her up for success so I can praise her efforts and give her a break. I also try my best to push her as far as I can without causing her to completely melt down.
Sometimes it's a simple of understanding what sort of consequence is truly relative to a situation. For example, if we've told her that a consequence will happen due to a specific behavior, I either need to establish ahead of time what that consequence will be, or give her a consequence I know she can stomach without going into full meltdown mode. For example, taking away a promised dessert or computer time without establishing those parameters ahead of time would result in a meltdown, while having her do additional chores as a consequence might make her grumpy and aggravated, but it would not cause her to completely "lose it." At the end of the day, pushing an autistic kid into full meltdown mode is simply not productive. Not only is it a traumatic experience for everyone involved, but a meltdown doesn't help a child learn new skills or establish socially appropriate routines. Sometimes meltdowns are unavoidable, of course, but I've definitely done my best to try to minimize them in A.'s life - but at the same time, I've always tried to push her as far as I could before that point, too.
It gets more complicated as she becomes a teenager, as she begins to learn how to lie, as I have to figure out what's typical teenage snarkiness and what's truly indicative that I'm pushing her too far. I'm also trying to encourage independence by reducing my amount of helicopter parenting when it comes to school, but that's also tricky because I don't want to be completely disengaged, either. Now that I'm back at work and I also have another child for which I'm responsible, I don't always feel like I'm on top of my game. I guess the important thing to remember is that nobody is perfect, and that all I can do is love her the best I can at any given moment.
Empathy is something I rant about a lot in this blog. There's a very good reason for that. Despite the fact that several scientific studies and scores of first-hand accounts of autistic adults suggest otherwise, a lack of empathy is still often listed on major websites as a common symptom of autism. As I've said time and again on this blog, it's a perception I've watched my own daughter challenge time and again.
I continue to bring it up because it's a very important conversation to have. It's important for the world to understand that autistic individuals often empathize extremely deeply with the world around them. In fact, it's sometimes the intensity of this empathy that can cause autistic individuals to close up, close off, and shut down. I've read essays and blog entries from autistic individuals who have done just this, and I have witnessed the same behavior from my own daughter from time to time. When her friends are hurting, she feels their pain so intensely. It often seems like it's impossible for her to detach from those situations when they happen, that she struggles with maintaining a distance from the situation. Instead, she feels the pain, anxiety, or sorrow just as intensely as if the situation were directly happening to her own self. It's no wonder such an intensity could be overwhelming at times.
I continue to bring it up because it isn't always obvious. My eldest can be incredibly blunt and painfully rude at times. Usually, she calls it like she sees it, and she doesn't dress her words or actions with social niceties or frill. When she's struggling, she'll sometimes verbally explode on those around her - sometimes this might involve yelling, or saying hurtful things to someone. This is usually a product of stress, frustration, or anger, and there's almost always a trigger, whether it's peers distracting her when she's struggling to focus in class to make a deadline, or whether it's a violent reaction to something she has taken incredibly literally. The other afternoon, for example, she was beginning to freak out, and I made the mistake of chiding her with the phrase, "What's wrong with you?" which I meant innocently enough, to inquire about her overall moodiness on that particular afternoon. This triggered a pretty intense meltdown because the phrase I used made her feel as if there must be something really "wrong" with her, and I spent nearly an hour backpedaling, apologizing, and generally assuring her that I didn't mean the phrase the way she interpreted it, and demonstrating that, apparently, parents can make some pretty crappy mistakes, too.
The subject of empathy is important to talk about because I see so many situations that come up where A. demonstrates amazing acts of empathy. She really doesn't like our dog, for example, but whenever the storms come and he starts trembling and shaking because he's scared, she'll get down in the floor with him and pet him all the same, because she can't help but feel empathy for him. She often struggles with younger members of the family, because - let's face it - when you're a fifteen-year-old girl, there's really nothing more annoying in the world than younger relatives who desperately want all of your attention whenever they're around you. Still, she'll volunteer to spend time with younger cousins when they're around, finding ways to play games with them or to relate with them. She always needs to do so on a limited scale, but I'm always impressed that she makes the effort without being asked to do so. Most recently, we went to an arcade with the family, and A. used the majority of the tickets she won to trade in for a specific present for one of her younger cousins - a small act of kindness that completely made his day.
The perception of empathy as it relates to autistic individuals is changing. When you do a Google search on autism and empathy, you find scientific papers, autistic individuals talking about their own perspective of empathy, and the idea that the "lack of empathy" symptom is really just a myth. Most websites will now talk about "problems with the demonstration of empathy," which is, I believe, a much more accurate method of describing this particular symptom. Still, the reason why these perceptions are changing is because so many people have been challenging the ideas for such a long time. Because of that, I'll continue to celebrate my eldest daughter's empathy, each and every time she fully masters yet another method of demonstrating that trait. Sometimes I'm convinced that her heart is as big as the world.
I've been really terrible about writing over the past couple of months. Mostly, it's because I haven't managed to sculpt out a new daily routine that allows for the time I need to devote to the art. Caring for an infant is time-consuming and often very unpredictable, and I just haven't managed to "get back into the groove" of doing much more than spending time with my family and getting basic chores accomplished. This past week, I finally returned to work after 16 weeks of maternity leave, so I am hoping that being forced to comply to a standard routine five days out of every week will help me get back into some of my older habits.
A. has been very quick to chastise me for my writing delays. Specifically, she's aggravated that it has been nearly two months and I still haven't written an entry about her birthday, which is something I habitually do every year. I often say that I plan to employ A. as my literary agent, specifically because she tends to give me such a ridiculously hard time about my writing. "Have you finished your book about Highway 11 yet?" she'll still ask me, or "Have you been working on your children's book?" When I sheepishly shuffle from side to side and confess that I haven't done any writing at all lately, she'll chide me, ask me "why not?" and tell me that I need to get writing. In some ways, she's simultaneously my biggest fan and my worst critic. But, by any standard, this entry is long overdue.
I was a little concerned about A.'s birthday this year, to be perfectly honest. I'd completely outdone myself with the elaborate Minecraft birthday party last year, partially because I knew there was the possibility I would have a small infant this year and such an elaborate celebration would simply not be possible. And, in fact, there was an infant in the mix this year, which did take a lot more of my time and energy than I even guessed it would. To make matters more complicated, I forgot about the fact that A. likes to do her weekend party before her actual birthday, and I'd been planning for her to invite friends over the weekend after. So, A. decided that she wanted to do a celebration on her actual birthday, complete with cake, a special dinner, people visiting, games, decorations, and presents, and considering that her birthday was on a Thursday, it was a little tricky to pull off.
It's always interesting to me that A. is very focused on making the actual day of her birth a special one. It makes a certain amount of sense - it is her birthday, after all. It's just funny to me. My birthday always falls near Memorial Day, so I grew up celebrating my birthday on that holiday weekend every year. It always gave me more time to celebrate, travel, visit with people, and of course a day off from school. As much as A. enjoys the weekend parties, it's the celebrations that happen on her actual birthday that mean the most to her. It's really sweet, actually, that marking the passage of another year is such an important ritual for her.
This year, I kept the entire celebration exceedingly simple. I made her a collage from some of her favorite art about one of her Original Characters that is her main avatar on Deviant Art. I decorated the house with balloons, streamers, and banners. I wrote a big sign in chalk on the driveway outside. I poured confetti all over her desk in her room. I guess most notably, I did all of this while she was at school, so when she came home from school in the afternoon, she came home to a house ready to celebrate the day she was born. I think she really appreciated that. There was an element of surprise to all of it, and it also helped her feel good about returning from school at the end of the day. We made her a special dinner of spaghetti (with no sauce for her, of course) and I got her an Oreo Blizzard ice cream cake from Dairy Queen (this has become a tradition). I decided to decorate her cake with trick candles that kept relighting themselves after she blew them out as a way to tease her. We invited local family members to come and celebrate with us, so it was a very small gathering. Still, there were video games to play and presents to open, and A. felt like she was the queen of the world for the evening. It all seemed to go over extremely well.
Her favorite present, of course, had been shipped from Amazon.com from her grandmother. It was a plush of her favorite Nintendo character Ludwig von Koopa. A. has become quite the "fangirl" of Ludwig in recent months, so when she opened up the present, she squealed and screamed in a manner I'm not sure I'd ever heard before. In fact, I'm fairly certain she was hyperventilating. Needless to say, she was pretty pleased with her haul.
Sometimes, simple is really all you need. She was just as happy with her birthday celebration as she has been in the past, and I think she felt very special and very loved. We also did a couple of other things - Thomas took her to Wild Bear Falls the following weekend since she loves that water park, she invited a friend over for a while, and several weeks later we took a trip to Dollywood. I'd also made an effort to do a small special thing for her each day of her birthday week, whether it was getting her ice cream, or going to Pizza Inn for dinner one night, or watching movies together. So, her birthday itself was very special, but I wanted to make sure the week surrounding the birthday was very well celebrated, too.
There have been a lot of changes in the household lately, and I know it can't be easy to suddenly be the teenage sibling of a baby who has a very piercing cry when she's upset. I just wanted A. to know that she's still just as important and just as loved as she was before Kes came into the picture, and that I recognize how awesome she is and want to do everything I can to celebrate that fact as often as possible. Birthdays just give me a convenient chance to do so.
(As a postscript, A. walked into the office while I was typing this entry. "Are you working on the entry about my birthday?" she asked me. I assured her that, yes, finally, I was writing about her birthday. She smiled real big, almost like I'd managed to give her another birthday present, and she gave me a hug. It's amazing how something so simple can be so important and special to her.)