When I returned from my big conference in February, I was able to look forward to the middle school production of The Wizard of Oz, in which A. got to play the role of the Door Keeper.
What door keeper, you might ask? The one who was at the gate to Oz, of course, the one who lets you know, "Nobody can see the Wizard, not nobody, not nohow!" It wasn't a very large role, but A. had a few lines, and she delivered them awesomely. She projected very well her voice filled the entire gymnasium, and she wasn't even wearing a microphone. She had energy, enthusiasm, and was very true to character. Moreover, the part of the door keeper was the part she actually wanted. We'd discussed possible roles before she went to audition, and she decided that the door keeper was just zany enough to be her kind of character.
The performance itself was very well done. For a middle school production, the play put my own meager high school drama club trials to shame. There were several strong actors and actresses, and it was obvious that a lot of time and energy had gone into every detail of the show, from lighting cues to stage blocking to set design. Granted, it was still a middle school production, but I couldn't help but be very proud of this group of kids who'd devoted so much of their lives to this small play for the past several months.
What was most impressive to me, however, wasn't the way A. delivered her lines, or her own impressive acting abilities. What was most impressive was, at the end of the show, the way A. stood at curtain call to take her bow, and how much she clapped for everyone else involved how she watched the other actors and actresses join the cast line, and how she cheered them on, clapping her hands, laughing and looking at her peers with a face beaming with pride. It was the first time I think I'd seen A. actively take an interest in being a part of a collective, or part of a team she understood that the show was much, much bigger than her rather small part, and she still had so much pride to be contributing and connected to something that was so much bigger. It was the level of social awareness that impressed me, and it was the fact that she obviously took so much joy and excitement in the entire project that completely delighted me. Her level of commitment and camaraderie was outstanding. In short, I think I got to watch her engage in an activity that she truly had a great deal of passion for, and it gave me hope that this may be a wonderful outlet for her in years to come.
Granted, I'm the mother, and as the mother, you tend to be a little biased when it comes to your own child's talents and capabilities. Still, I felt a little validated in my thoughts when the drama teacher asked to meet me, and I spoke with her briefly about A.
"She really has a lot of talent," her teacher told me. "She really needs to get involved in theater."
"We've been talking about having her join the drama club when she goes to high school," I said.
"Sure," the teacher said, "but I'm talking maybe the Oak Ridge Playhouse, or some of the other local theaters."
So, I've been keeping an eye out for casting calls and auditions around the community, even though I honestly don't know the first place to look.
And it's not about finding a career path, or preparing for college, or any of the numerous reasons I guess parents are supposed to want their kids to get involved in extracurricular activities. It's because I saw a real confidence in A. on that stage, a real desire for her to be a part of something greater, to help create something amazing for others to view. I definitely want to do everything in my power to help encourage that, and to help foster that creative energy as long as she keeps the interest.
Besides, she comes by it honestly. I was a theater nerd who sought out other theater nerds when I was in high school. Her biological father got involved in some dramatic productions during high school, as well, if I'm remembering correctly. That being said, I'm pretty sure she's already putting the both of us to shame. But that could just be the Mommy Pride talking. :-)
This past Monday morning, my husband was involved in a pretty serious car wreck. Fortunately, he was not badly hurt just banged up a bit and a couple of gashes on his head but the car itself was totaled, and the event has made for a rather stressful week.
When I talked to A. on the phone after school let out, I went ahead and prepped her for the situation. I wanted to let her know that Thomas would be driving a rental car so she wouldn't be confused or upset when he wasn't driving his regular car home.
"OMG is he okay?!" she asked. When I assured her that he was, she said, "Oh, thank God, thank God!"
Then, later, we showed her the picture of the totaled vehicle, and Thomas also showed her the big gash on top of his head. It was interesting to watch her mind work, to see what she was concerned about.
"I'm glad you're okay," she told him. "I don't know what we'd do without you!"
Despite her dramatic leanings, A. is not necessarily one to express her emotions in detail very often at least not to her parental figures, in any case. When I get a sleepy or a quick "love ya" in response to me letting her know that I love her, I always feel warm and fuzzy inside, particularly because it is such a rare occurrence. Obviously, we know that she cares for us, and that we are important to her, but like any teenager, it's just not something she verbalizes very often. So, when A. was voicing her concern about Thomas's car wreck, it was a pretty heart-melting moment.
Then, of course, she went into more detail.
"I mean, who would fix everything for us? And if you weren't around, we wouldn't have as much money, so we wouldn't have this nice big house we'd have to move into a small house or an apartment."
I couldn't keep myself from laughing at this particular statement, and A. called me out on it, but I told her I was just overcome by how true it all was. And, that's the thing it's such an incredible amount of insight for someone her age. I've never sat down and explained to A. the fact that when we moved from a single-parent income to a dual-parent income, that changed our standard of living tremendously. A. has asked me about our life when I was still in graduate school, before. She remembers when we shared the tiny, run-down, one bedroom apartment, and she remembers going to the laundromat, and she remembers the little treats she used to get a glass bottle of cola, or a small snack at the gas station. We were talking about this stage in our life one day when she seemed to figure it out. "We were really poor, weren't we?" she asked. And it wasn't as if we were destitute, or going hungry, or unable to meet our basic needs. But it was a lot different than the life we live now, and I think that's made a big impression on A.
Still, that obviously wasn't all A. was concerned with that Thomas would still be around to fix things, or that he would make sure we wouldn't slip into poverty. She gave him a huge hug, and lingered around the kitchen for a while as we prepared dinner something she doesn't normally do.
"We should do something together," she told Thomas, out of the blue. "You and me."
That's not entirely a novel concept, either. A. has really reached out to Thomas a lot lately for one-on-one time, playing video games together, or going out to eat. She explains that it is "bonding" time, and she definitely craved a lot of it while I was out of town for work. The two of them even got to spend some quality time in the snow together. Thomas actually used FaceTime on his iPhone to let me watch the two of them play in the snow. It was awesome to be able to take a break on my way to a meeting to sit and watch and listen to them laugh and play and throw snowballs at each other. It's just one of the many reasons I love technology.
I also love technology because it keeps my loved ones safe. It deploys air bags, it crumples doors and hoods in the right manner to cause the least amount of impact to a driver, it allows texts to go through assuring me everything is fine, it allows us to research replacement car options. It make sure my husband returns home from work safe and sound. Because, as A. pointed out, we really don't know what we would do without him.
Life has been so incredibly busy and crazy these past few weeks that I've completely neglected to share the news we received back during the first week of February. Thomas and I will be bringing another girl into the family, and A. will have a little sister in just a few more months.
We scheduled the anatomy ultrasound for early in the morning for several reasons. First of all, it makes it easier to not miss quite as much work if you begin your day at the doctor and then head back to the office afterwards. Mostly, however, I'd promised A. that she would be in attendance when we found out if the new sibling was a boy or a girl, and an early morning ultrasound was a great way to make sure she missed the least amount of school while still being able to participate in the event.
A. was much more engaged and interested than I would have expected. She wanted to know what certain shadows were on the screen, why certain things turned certain colors, what part of the baby we were looking at each moment, and -- of course -- whether the ultrasound technician could tell if it was a boy or a girl. When the ultrasound tech finally revealed that the baby was a girl, A. yelled triumphantly, "I knew it!" and "I win!" As a little bit of backstory, pretty much EVERYONE -- myself and Thomas included -- had a gut feeling that the baby was going to be a boy. That probably just goes to show how completely off my intuition is at times. A., on the other hand, said it was going to be a girl -- even though, to be fair, she was saying it mostly because she wanted it to be true. A. was a little leery at the idea of having a little brother, but a little sister was something she felt she could be okay with. When A. was broadcasting how she was right all along and proclaiming that she was the winner, I couldn't help but wonder if she was more excited because she had "guessed" right, or simply excited that the baby ended up being a girl, after all.
The knowledge hasn't really changed any of our regular proceedings, however. We've still painted the nursery blue in preparation for our Doctor Who theme. We're still registering for a lot of gender-neutral items and accepting hand-me-downs from any gender option, because we are always grateful for any help we can get. Despite A.'s obvious gender profiling in the announcement picture she designed for us, she's maintained a very liberal attitude on such matters, as well -- perhaps because she sees herself as a sort of a tomboy, and she hopes to model that same behavior for her little sister. Still, it's exciting to know the sex, and it definitely seems to have helped ease A.'s mind about the baby a bit -- my guess being that it helps her feel a little more prepared for what is about to come.
A. has also agreed to have her picture made in relation to the "baby bump" that is her little sister, and she's also felt the baby kick -- a phenomenon she has decided is "just kinda weird," and I can't say I particularly disagree with that one. She wanted to know how exactly it was possible for a baby to kick in there. It is kind of mind-blowing when you stop to think about it -- just what all is entailed in creating a little person, and how strange it must be to view all of that from the outside. I am grateful that A. seems much more open to the idea of being a big sister in general, and that she seems to be engaging more about the subject of her own volition. Hopefully by the time June rolls around, she'll be very prepared and ready to welcome this new little stranger into our home, and she'll know a little bit better what exactly to expect. Or, at least, she'll know as much about what to expect as we will, which is really the best one can ever hope for.
I'm always amazed at just how empathetic my daughter can be sometimes. It's especially highlighted by the fact that "trouble with empathy" is always one of the things that is said to be indicative of autism, and it's just something I've never seen A. have a problem with if anything, she's often too empathetic.
Today was my first day home from my week-long work conference. My bosses gave me the day off, which I have happily been spending sleeping, meditating, walking, and in general recovery from working 10 days straight, and usually 10-15+ hours a day. Today is also the first day of A.'s play that she's so excited about, and since I wasn't sure how that would work as far as pick-up, drop-off, and rehearsal time was concerned, I asked A. to call me with the details later in the day.
A. called me early the afternoon, sounding very grown-up, mature, and excited. Their first performance for the 6th and 7th graders at school was today, so A. told me I could pick her up after school. She's generally a bus rider, so when she called me while I was on my way to pick her up, she told me I could pick her up directly outside the gym.
I should mention that this was the same place I picked her up yesterday after rehearsal, which in itself was awesome. A. hadn't seen me in a week, so I parked and waited for her outside on the sidewalk, and she said she wanted to do a "slow motion running at each other and hugging," which was awesome. I'm sure that, eventually, giving your mom big hugs in front of your friends will no longer be "cool," so I'm enjoying it while it lasts.
Apparently, however, parents are not supposed to pick up their children directly outside the gym, as this is the place where the buses pick up kids. I'd heard this before, but I'd thought since A. was in the play, and since it was after dismissal time, it would be the same as yesterday, and I would run into no problems fetching my daughter. In fact, there wasn't anyone else around, and no buses, so she climbed in, and we got ready to go.
A.'s principal, however, came rushing at me, yelling at me for picking up A. in the bus lane, that this was for buses only, that I was not to do it, etc. I apologized and said I would not do it again, but it rattled me a bit. Whenever anyone yells at A. or corrects her in a harsh manner, she has a tendency to come apart, and I've also really understood how that feels, because if someone does the same to me, I do the same thing, too.
A. apologized, too, since she'd been the one to tell me to pick her up outside the gym. I told her it was okay, and we went ahead and made plans for the next day, too. We went on about our conversation, and I did my best to recenter after having been so rattled. Thankfully, due to years of therapy and all of the mindfulness training I've gone through, I was able to recognize that I was upset, understand why I was upset, and then move on from in, instead of staying caught up in the panic, or crying, or otherwise reacting in the manner I would have in the past.
Despite that, however, A. could tell that it had bothered me.
"Are you okay?" she asked.
"Yes," I said. "I just get rattled when people yell at me. I don't like it, and it upsets me. Your principal was yelling, and I just thought it was a little mean."
"Oh, he just yells like that sometimes," she said, as if to explain that I shouldn't take it personally, because that was just the way he was. Which is precisely a sort of lesson I'd given her in the past.
"I know," I said.
"I understand, though," A. continued. "I have pain when people yell, too."
I smiled and said, "I know you do," impressed with that empathy not just that she understood where I was coming from, but also that she understood my facial expressions, demeanor, and general attitude enough to be "clued in" to when I was upset, even when it really wasn't that obvious.
It's just so crazy, sometimes. I have this little critter kicking around my belly right now, and it makes me remember when A. was the same sort of little critter, moving and stretching and poking and hiccuping in this same belly, fifteen years ago. It's been the most amazing journey in the world to watch her grow from a tiny baby to a toddler to a small child to this fantastic young woman she's become. I am so incredibly grateful that I had the privilege and honor of being her mother.
is the time of year when things get pretty crazy busy around the Alley
household. At my day job, I'm hard at work on helping organize a company
conference that will bring in over a thousand attendees from all over North
America which, unfortunately, takes time away that I would much rather be
spending with my family. That being said, we've had quite a few little
adventures over the past couple of weeks, so I'll do my best to give you a
weather has been the biggest news lately. Our little town of Knoxville,
Tennessee, rarely sees temperatures dip even into the teens, but we've had a
great deal of arctic weather leaving us hovering many mornings right around
zero degrees Fahrenheit. We've had a lot of snow, and a lot of ice, which has
often left the roads impassable, and has resulted in more snow days in a
one-month span than A. has probably had in total throughout her entire school
career. A. has spent a lot of that time pretending that she's fighting Doctor
Blowhole, who is obviously behind the Polar Vortex, and enjoying the winter
weather, sliding down hillsides on her belly like a penguin.
has been making great progress at school, at least from a homework standpoint.
I'm not sure how that's all translating into grades, yet, but I was amazingly
proud of her tackling her math homework without complaint for over an hour one
afternoon, and we've been diligently going over the Periodic Table of Elements
in preparation for a test that keeps getting delayed by the weather. I keep
making up ridiculous, nonsensical stories to try to tie the elements together
and jog her memory of what they are, which seems to be helping. At the very
least, she thought it was hilarious when I first started telling the stories,
so there was a small amusement factor from the whole process if nothing else.
is not entirely amused by my recent inspiration to try to expose her to the
television series Buffy the Vampire Slayer. I don't know what triggered it in
my mind, but it's such a great series with strong female characters and an
emphasis on the importance of supportive and loyal friends. A. will be going
into high school next year, so I figured this might be one way to help her get
prepared. As my friend Jill says, how better to help a teenager understand that
high school really can be hell? Still, A. is not convinced. I've managed to get
her to agree to watching 5 episodes before she completely gives up on it,
of teenagers, one of my friends has started a social group for teens on the
autism spectrum. It's targeted especially for Asperger teens, but A. seems to
fit in with the group quite comfortably. They had their first meeting Friday
night, where they got together at a parent's house, watched a movie, ate
popcorn and candy, and I'm pretty sure a nerf gun war commenced after the film
had ended, even though A. just hung out and showed off her drawings. She was
reluctant to go mostly because she hadn't seen the film yet and she has a lot
of anxiety about watching new movies but she ended up having a blast. She
enjoyed the movie, and she seemed to really enjoy meeting some new people,
talking with and making jokes with them. I can always tell she's having a good
time when she starts quoting videos from YouTube in tandem with her friends. I
think that's a good sign, right there.
I may be hard at work, but life is still continuing apace. I'm pretty sure A.
wishes it would stay winter for the rest of her life, but I'm secretly hoping
spring comes soon, or at least we finally escape the clutches of the Polar
Vortex. Maybe A. needs to track down Doctor Blowhole after all.
This morning, the phone number of my daughter's school flashed as an incoming call on my iPhone screen. There is only one time of day when this phone number doesn't immediately make me nervous. Every Friday afternoon, at 5 pm on the dot, we receive a "robocall" from the principal, letting us know what events are happening the next week, letting us know how to prepare our children for any tests or tasks ahead. I can safely let that call go to voicemail and then listen to it over my car stereo speakers on my way home, just to check and see if I need to follow-up with A. on anything.
When the call from school comes in the middle of the day, my stomach immediately sinks.
To be fair, it's not always bad news. Often, it's just that A. isn't feeling great. She may be calling me directly from the office, to let me know she has a headache, or her stomach hurts. Unless she has a fever, I tell her to tough it out, even though I will sometimes drop by with some medicine to help her feel better. These sorts of calls haven't been very common this year, though. It's one major indicator that A. is enjoying school a lot more in the 8th grade.
Sometimes, it's a teacher trying to get in touch with me about an upcoming IEP meeting that we need to schedule, or it's just the school counselor checking in because there was a pep rally or a school dance or some other activity that messed with her schedule and rattled her day somewhat. I've really been happy with A.'s school, with the awesome team she has looking out for her, and all of her staff and teachers who genuinely seem to care so much about her. I like having the connection and the support, so obviously the phone call is not always a bad thing.
Sometimes, though, the phone calls are not great. Sometimes, she's having a meltdown. Sometimes, she's failing a class. Sometimes, she's being suspended from the bus. Those are the phone calls I don't often blog about, because my daughter is a teenager, and the last thing in the world I want to do is embarrass her by going into vivid detail about when she's not at her best. Those are already extremely difficult times for her anyway, and I don't want to do anything to make them more difficult for her. All that being said -- sometimes, a phone call from school is *really* not good news. So maybe that explains the sinking feeling in the pit of my stomach when I see the phone number flash on my screen.
Every once in a while, however, a phone call from school is the last thing you expect.
Today, it was her Drama Club teacher. Her happy, bubbly tone told me everything was fine, so I was able to relax immediately.
That still didn't prepare me for the news she had for me, however.
"Your daughter handed me a wad of cash for our fundraiser," she said. "It's about $60. I wanted to make sure it wasn't supposed to go somewhere else?"
I found myself searching my brain. Thomas and I don't carry around cash as a rule. I hadn't given her cash for anything at school.
But Christmas was less than a month ago. And she got a lot of cash from loving relatives who are often clueless as to what to give a geeky teenage girl with a narrow field of interests. She stuffed all the cash in her pockets and I don't think it ever made its way back to her piggy bank upstairs, and she hasn't voiced any interest in buying anything.
"I think that's actually her Christmas money," I said.
And, how incredible is that? I mean, who does that? What teenager on the planet decides that she wants to spend a large fraction of her Christmas gifts on funding activities she enjoys at school? She didn't even want anything or ask anything in return. And she was absolutely insistent that the teacher keep the money. And what parent gets a concerned phone call from school just because their teenager was giving too much? Don't get me wrong -- it makes perfect sense. This is the most enjoyment I've seen A. get out of a school activity in her entire career in the public education system, so I'm not surprised that she wants to donate to the Drama Club simply because it's so much fun for her and she loves it so much. But, still.
I told the teacher to hold onto the money and I would talk with A. just to make sure this was what she wanted to do. I'm definitely not going to try to talk her out of being such a generous person, but I do want to make sure she completely understands what she's doing. I also want her to understand how proud I am of her, what a really selfless thing this is for her to do, and try to reinforce the behavior without embarrassing her or making her feel weird.
Because, sometimes when the school calls, that's means it's a bad day. But other times, it just means your kid is being a superhero.
I recently enrolled my daughter in the OWL program at my church, much to her dismay. This is not a topic she is particularly keen to discuss or even think about. Not only would she much rather be engaged in her preferred activities, and not only does the program demand that she spend time in a social learning exchange with others, but it's also centered around a subject that she finds incredibly embarrassing. What's so embarrassing about OWL, you might be asking? Isn't that just the tests you have to pass in order to become a wizard in the Harry Potter universe? Nothing quite so glamorous, I am afraid. "OWL stands for Our Whole Lives," as in Our Whole Lives Lifespan Sexuality Education.
Now, perhaps, the embarrassment makes a little more sense.
I attended a thorough orientation and did a great deal of research before I decided to enroll my daughter in this program before I came to the conclusion that this program was best aligned with the values of our family. It provides the information that I feel she needs about sexual behavior and health, while also focusing on relationships, personal skills, responsibility, and how these issues are represented and discussed in society and culture.
Most importantly, I appreciated that the coursework focuses so much on helping the attendees evaluate their own values, beliefs, and feelings on the subject matter. It is education, which is absolutely important, but it also allows for a great deal of self-reflection, which is just as important. These are difficult, and often embarrassing topics to think about, discuss, or consider. I'm comforted that OWL is providing my daughter a safe environment to have these discussions especially considering that I imagine she's a lot more comfortable doing this when she's not around her mother.
That being said, Our Whole Lives curriculum may not be for everyone. Families are diverse in their beliefs, ideas, and attitudes about sexuality. Sex is approached differently in various cultures, faiths, religions, and even regions of the country, and parents obviously want to make sure that their children are receiving education about sexuality that aligns and affirms their family's traditions and beliefs. That is, in fact, part of the reason I personally chose the Our Whole Lives curriculum for my daughter it was provided by my church, and it focuses on inclusivity, acceptance of diversity, and the importance of justice, all which align with the values with which I was brought up, and the values that inform the parenting of my daughter. As parents, we get to make the choice about how we talk about sex with our kids.
What I will say is this: I believe that it is extremely, vitally important to make sure our children are educated about sex. Parents have the freedom to guide and drive those conversations, but I also feel as if they have the responsibility to actually have them. Especially when your child is on the spectrum.
Let's face it most parents dread this topic. Parents of kids with developmental disabilities often feel even more awkward. When Lindsey Nebeker asked parents about this subject, "the number one reason they give is that they are unable to tell the level of ability their child or teen will have in grasping such topics." We don't know if they're ready. What if we traumatize them? What if they don't understand?
Obviously, there are no hard-and-fast rules for knowing when your child is ready, or even how to begin having those conversations. Even when you try to have those conversations, you may meet resistance it may be difficult for them to understand, or they may be completely mortified to have a discussion about the subject at all. Still, it's important for them to understand what's happening to their bodies, to their emotions, to their peer relationships as they become even more complex and confusing in the teenage years. I could explain the importance of these issues at length, but Shannon Des Roches Rosa has already done so in this blog post.
Part of the reason I'm so grateful for the inclusive, self-reflective environment of the OWL program is because I feel it will allow students to really get a chance to consider their own ideas and orientations in a safe environment, free of judgement. Self-esteem is often a major casualty of the hormonally-charged environment of high school, and I feel like one of the best guards against such wounds is building a strong, confident sense of self. Imagine listening to your girlfriends talk about boys, feeling left out because you don't share those same feelings.
Maybe you want to have a romantic relationship, but the idea of sexual attraction is completely baffling to you. In Ettina's blog post "We're Not All Sexual," she talks about how confusing it was to grow up as an asexual teenager, as someone who did not have a sexual attraction to anyone. I feel as if programs like OWL can help teens in these situations understand that they are are not alone, and that they have the love and support they need.
I feel like these sorts of discussions also help dispel a lot of the myths about autism and sexuality, many of which are collected in a chapter by Lindsey A. Nebeker in Relationships & Sexuality: A Handbook for and by Autistic People --myths such as autistics never have relationships, that they never get married, or that they are incapable of empathy. These are discussions that our teens need to have with responsible, caring adults, because they are looking to us for guidance.
Because of this, for many Sunday evenings in the upcoming months, I will be dragging my daughter to attend OWL. Sadly, she won't be taking her Ordinary Wizarding Level exams at Hogwarts, but hopefully she'll be learning a little bit more about life, responsibility, respect, and herself.
The last week, we've been experiencing some unusual weather in East Tennessee. Generally, our winter weather dips into the 20s and 30s on cold days, and it might even plummet into the teens on really cold days. This week, we've been dealing with temperatures that dipped down to zero degrees fahrenheit one morning. It has been cold, icy, and snowy which has delayed the return to school from the holidays.
It's interesting, because usually A. revels in snow days off of school. She enjoys "slacking off" and having a day just to spend to herself. This time, however, she's beginning to get a little antsy. She's ready to get back to school. Specifically, she's ready to see her best friend again after the long winter break.
She's been talking a lot on the phone over winter break mostly with her best friend, so much so that we've had to add minutes to the phone plan twice in the past two weeks. It's a bit excessive, but A. generally never talks on the phone at all, and we don't want to do anything to hamper the social outlets that she has. She also spent a week with her grandmother celebrating the new year, having fun conversations, going swimming in the local indoor water parks they apparently had a very wonderful time. And, in the snow-covered neighborhood, she's been outside a lot enjoying the winter weather she loves so much, playing with friends from school, sledding down embankments. She's definitely been a social creature the last couple of weeks.
In part, I believe that's because she's not been suffering the social and sensory overload from school. It's made it a lot easier for her to reach out. She hasn't had to spend so much time in recovery, just trying to normalize from the chaos of each day. Additionally, I think because she hasn't been receiving the social interaction that a body so desperately needs. A. gets lonely, and I think she's been more inclined to reach out since she hasn't had the usual social outlets available.
By the same token, I think another reason why she's not happy about yet another snow day has to do with the fact that she was expecting to go back to school. She's been prepping herself each day for the return, getting herself emotionally and ready for that environment again. Each evening, when we get another phone call or text message letting us know that school is, once again, delayed, she has to completely change her plans, get prepared for an entirely different mindset the next day. Now that she's older, she does a much better job of dealing with change and transitions, but I can still watch the expression on her face, the look in her eyes, and I can tell when something is grating at her, when she's having to work hard to control and normalize her behavior. Sometimes, like tonight, she'll even sink to her knees, and gently bang her head into the wall not in a way that's truly self-harming, but in a way that does echo back to stimming behavior she engaged in when she was much younger. She'll do that, or she'll pick up old games, old cartoon, old characters that she finds comfort in. It's interesting to watch the way she soothes herself when things don't go the way she wants them to go. In a sense, she's learning the basics of coping skills, here. And that's very good news indeed.
So, one more snow day. Hopefully, the most bitter of the cold is behind us. Hopefully, A. will be able to return to school, return to her usual routine, return to seeing her friends again. Hopefully life will get back to normal soon.
Well, here were are at the beginning of another year. The holidays went extremely well, if I do say so myself. I think this was probably one year where A. felt the least overwhelmed. During the holiday season, it's easy for A. to reach a point of "too much" too many people, too many demands, too much stuff. Often, she spends the afternoon/evening of Christmas Day hiding in her bedroom, desperately trying to decompress from all of the chaos of the holiday. This year, however, she was in extremely good spirits, and managed to stay downstairs for the majority of the day, interacting with family, laughing, and having a great time. (Granted, she spent a lot of that time playing one of her new video games, but still!)
I think it helped that we didn't try to do too much, and that we spread everything out. In the past, I try to have everybody come visit and celebrate at my house at some point. I'll host a big family dinner, usually several days before Christmas so that I won't interfere with any other family plans. This year, I didn't trust my energy level to stay high enough to pull something like that off, so my mom and grandmother visited while we made cookies and gingerbread houses, instead. A. still had a great time, but she also had a lot of time to play video games and spend quality time with my mom and grandmother without being too overwhelmed by people, noise, bodies, and chaos. We went over to Thomas's parents' house on Christmas Eve to celebrate with that part of the family, which A. always enjoys. On Christmas morning, it was just Thomas, A., and I for a little while, which was actually pretty nice. We were able to go through the presents a little more slowly, take our time, and be a little less rushed. A. was a little disappointed that there weren't more people in the house, but I think it helped her regulate and prepare for the rest of the day. For brunch, we headed over to my brother's house, and celebrated with them and the rest of the family. A. had a place she could go to chill out, but she also spent a lot of time in the kitchen, too. We also gave her a very specific time we would leave to come home before we even arrived, so she knew exactly what to expect and exactly how long we would be there. That seemed to help A LOT. When she returned home, she got to play video games and spend time with the family for the rest of the day.
Overall, it was a very low-stress, laid-back, family-filled, fun holiday. A. seemed to have a great time, and she was still in good spirits about spending the rest of her winter break from school with her grandmother. Not a bad way to end the year and ring in the new one.
I feel like A. and I have really had a great year. We've had a lot of stuff to work on, but we've been working on them together, and I feel like we've grown a lot closer, that whatever typical teenage chasm that felt like it was wedged between us back in 2012 has healed over and we've had the chance to learn a lot from each other. A. is ending the year with all A's, B's, and C's on her report card for the first time in a very long time (she's worked really hard to bring up her math grade, and I couldn't be more proud of her), and she's ending the year with a lot of empathy and interest for individuals as people, with good questions, with understandable fears and anxieties, but also with a lot of love. I know this upcoming year will probably be very challenging. There will be a new sibling, of course, and that's going to be an adjustment. A. will begin high school this year, which will be a completely different sort of adjustment. Still, I remain hopeful. We've really come a long way. I can only imagine I will continue to be surprised and delighted at all our future adventures, too.
This entry isn't about A., exactly. This entry is more about me, and about how 14 years of experience at being A.'s mother has really influenced the way I see things, now, and the way I move forward with my decisions and the direction of my life.
For those of you who don't know, I'm 34 years old, and I will turn 35 before this new baby is born. I'm not usually one to dwell too much on my age. I mean, I get frustrated at the gray hair, and I still like to dress like I'm a teenager in a punk rock band most of the time, but I don't normally think of myself as "old." More "grown-up," "responsible," and "adult," maybe (at least when I'm not wearing the combat boots), but I normally don't think of myself as an aging woman.
Now, each time I visit the doctor for a check-up, I have to wince whenever the term "advanced maternal age" comes up in paperwork, or in conversation, or in battery of factors that determine whether or not certain testing should be done.
The truth is, because I'll be 35 when I give birth to this new baby, it does place the child at a higher risk for some sort of chromosomal defect. I have the option, of course, of choosing to undergo specific tests that could tell me with 99.9% certainty whether or not there actually is an issue with the child. However, I don't feel much of an inclination to go through with them.
My daughter was born autistic. As such, I've been the mother of a special needs child for over 14 years. I understand that my daughter is high-functioning, and I understand that the unique set of challenges we worked through would be completely different than the unique set of challenges I would need to work through if I had another special needs child, especially if the condition were something completely different.
I know that, as a parent, I have been very fortunate. My daughter is doing well in mainstream classrooms, my daughter has learned how to communicate her needs and desires, and my daughter has mastered items of self-care. I can, at this point, at least imagine the possibility of my daughter going off to college, holding down a job, and living independently. These are all blessings for which I am extremely grateful, and are a cause for celebration each and every day.
That being said, I also know that this road wasn't easy. There was a time when my daughter was nonverbal. There was a time when the basics of self-care were severely delayed. There was a time when she didn't form relationships with others. There was a time when she couldn't communicate her needs and could only scream in frustration. There are still times where I have to repeat instructions for an unfamiliar task three or four times before it makes sense to her, often having to employ visual and tactile methods of communication to help it click. There are still times when she becomes so overwhelmed by the noise and chaos of the world that she loses control and lashes out in socially unacceptable ways.
When my daughter was born, I had no reason to suspect she might be autistic. In fact, I didn't even know what the term "autism" meant. Years later, I would look back in retrospect and wonder if her resistance to cuddling and avoidance of eye contact in infancy were markers of this condition, but at the time, I just accepted it as part of my daughter's unique personality. And, even after she was given a diagnosis, even after we worked with speech therapists and occupational therapists and experts on child development, I still accepted it as a part of my daughter's unique personality. She has always, and remains to this day, thoroughly and uniquely everything that she is, and that was the child I loved from the minute I felt her kicking around in my womb, from the minute I saw the tiny speck on the ultrasound screen.
The new child who is now tumbling around in the same womb brings a whole new set of possibilities and challenges into the world. Whether this kid develops along a typical trajectory or whether it will also require intensive special needs, it is still thoroughly and uniquely everything that it is, too. If this child is born into the world with ten fingers, ten toes, and a completely neurotypical brain, there will still be the regular challenges of cognitive and emotional development that all parents have to learn to navigate as their child grows from baby to adulthood.
If this child is born with a condition like Down Syndrome, then I will voraciously educate myself on the condition just as I did with autism, find local support groups, and get a strong understanding of the myths & truths of the condition. If this child is born with Down Syndrome, I will take comfort in blogs such Noah's Dad, who wants to share the story that Down Syndrome is okay, and I will take comfort in the incredible amount of advocacy and positivity that exists on the Internet for this condition. When I first did an Internet search for "autism" twelve years ago, most of what I could find centered on fear, on "mourning your lost child," and on the hopelessness that the diagnosis would result in a happy and fulfilling life. By contrast, when I do a search for "Down Syndrome" today, I see websites celebrating diversity, rallying advocacy, and stressing the positive, life-affirming outcomes for adults with this condition.The point is, even in the "worst case scenario" of an "advanced maternal age" pregnancy, there is still so, so very much hope. It's the same hope that carried me through these fourteen amazing years with my daughter, and that hope will continue to carry me forward, whatever risks, concerns, and complications may come to light. There are no guarantees in life, and as such, we must move forward through each present moment, doing the best we can with what we have. To paraphrase Emily Dickinson, we must sing the tune without the words, and never stop at all.
So, for those of you who were wondering, A. did actually get the part of Imogene Herdman in the Best Christmas Pageant Ever, the play that will be performed at our church the Sunday before Christmas. A. is beyond excited about the role, and I'm very proud of her. There's also a bit of nostalgia here for me on a personal level I was only a year or two older than A. when I played the role of Imogene Herdman at the same play with the Drama Club at my high school.
I explained to Thomas that there's something really touching about this role; there's something incredibly empowering when you're a misfit playing a misfit on stage, when the whole point of that play is to question people's ideas, stereotypes, and judgments of others. Second only to playing Titania in A Midsummer Night's Dream, it was one of my favorite dramatic roles, and I am super amounts of excited to see how A. interprets the character, to see how she plays it. A. is very secretive about her roles she wants me to be surprised, which makes sense. She wants me to wait and see the entire play in its context. She was the same way about her play over the summer, as well she really enjoys the element of surprise, and seems to delight in making me wonder over it.
She's also become quite the drama critic of others in their roles. She complains to me when other students aren't reading with a whole lot of emotion, or are just reading lines straight from the script. We had to have a discussion about this, actually, to make sure she understood that she needed to keep such opinions to herself because they might be interpreted as rude. Still, I can't help but rejoice in the fact that she does recognize when a line is being read with emotion, since that's often a difficult concept for autistic people to grasp. I can't help but delight in her inner dramatic critic, that is beginning to develop of recognition of good acting.
Outside of her budding acting career, A. is doing well, preparing for the holidays, and as such being on her best behavior. She always delights in Christmas in the weeks leading up to it, in the preparations for the celebration. She is the kind of teenager who will sing Christmas carols loudly in the parking lot without thinking twice about it whenever we go shopping. I love this about her, her enthusiasm for the holiday, and her enjoyment of the entire season. I think part of the reason I love the winter holiday season as much as I do is because my daughter enjoys it so very much. It's contagious in the best sort of way.
This past weekend, A. enjoyed celebrating the birthday of one of her friends by attending a sleepover at her friend's house. She apparently had no issues and had a wonderful time. Apparently, all the kids did was play Minecraft and watch silly Internet videos all night, so it makes sense that she would really enjoy a party like that. I was struck by the fact that when A. left her friend's house, she wanted to say goodbye to their two cats, too. She'd memorized their names, sought them both out, and the mother told me that A. had made great friends with both of them, even though one of the cats didn't normally warm up to strangers very well. It just reminds me how deep of a bond A. has with animals specifically cats and how comforting that bond is for her.
With two weeks left before Christmas, I feel horribly unprepared, but I guess as long as A. is having a great time and is excited for the next few weeks, I can't really ask more happiness than that.
My daughter has taken up a flair for the dramatic. Those of you who know my daughter personally are probably not surprised by this. Even those of you who just know me through my blog may not be surprised by this, because you were probably reading my entries this past summer when A. was taking her drama class at a local community college and absolutely loving it. Still, I'm a little surprised that she's taken as much initiative as she has in pursuing this hobby.
I should probably clarify something about A. She often describes herself as a "slacker." She isn't interested in taking on tasks that require a lot of extra work or that interfere with her daily routine at all. She will sometimes even turn down fun events if they seem like they would upset the apple cart too much. I understand, of course, that my daughter is not a slacker, and she's not lazy, even if she likes to claim that she is. I understand just how difficult it is for her to do a lot of things the come second-nature to other peers her age getting ready for school in the mornings, eating food, riding a school bus, sitting in classrooms, navigating the social maze of middle school, trying to understand and accommodate the diverse needs of teachers and authority figures, finding appropriate responses to the multitude of social situations that confront her each day, while all the time having to deal with the usual noise and unpredictability of life. Her neurotypical peers can navigate most of these events without giving them a second thought. It doesn't disrupt them, and they don't need to focus so much energy on simply figuring out how to exist in the world. A. does, and I understand how difficult and draining that must be. I get why she needs time to unwind and decompress every evening.
Which is precisely why when she does show initiative in an activity, I'm always so pleasantly surprised.
I had suggested, after she had such a great time with her acting class over the summer, that she may want to consider joining up with the Drama Club this year. I'd reminded her of it a couple of times, but then I let it go, because I didn't want to push her into doing something she wasn't ready to investigate, and also because as I mentioned before I understand how overloaded she already feels at school much of the time.
However, A. let me know she found out who was in charge of the Drama Club. And when they were meeting. And when they were having rehearsals. She wrote these on her school agenda. She made sure she was up and ready to go to school early enough on the mornings she needed to be in order to make the rehearsals. She practiced. And she got a part.
So, in February, A. will be playing the part of the Doorman in the Wizard of Oz at her Middle School.
Even more importantly, she's making sure she's getting to each rehearsal, she's helping out with other tasks whenever she can, and she's having a good time with it. Her part is very, very small by comparison, but she's attending every single rehearsal with a kind of fervor and loyalty that make me think of every single drama geek I had the pleasure of hanging out with in high school. In all of this, she is having an absolute blast.
Because she had been so interested in Drama Club at school, I let her know when a call for auditions went out from our church for the yearly holiday pageant. She wanted to try out for that, too, even though (much like with Drama Club) her initial concerns were not knowing what the play was, and not knowing what part she should try out for. I told her that she could just go and find out, and if she wasn't interested she didn't have to do it. So, she did, this past Sunday, despite the fact that I was sick and was not able to take her, so she went with Thomas which was very much out of the norm and a break in the usual pattern for her. She doesn't know if she has a part yet, but she already knows the rehearsal schedule by heart, and is ready to go to church every Sunday between now and Christmas since that means she might be able to rehearse for this play.
I'm just so very proud of my daughter. Acting isn't easy for anyone. You have to go out on stage, you have to memorize lines, you have to hope you'll make the audience laugh or cry or whatever you hope the reaction will be, and you have to worry that they won't. I'm so proud that she's able to work beyond all of that, to conquer any fears that she may have, and to give it her best on stage in front of everyone. I'm so excited to see her part in the Wizard of Oz. And I'm so glad she's found something she really loves doing in school.
On June 21st, 2014, A.'s new sibling is due to come into the world. A.'s first reaction to this news was a long, quasi-comedic yelp of "Nooooooooo!" at least, it seemed comedic, since she was smiling when she said it. She also desperately wanted to know, right away, if it would be a girl or a boy, and if there was a way I could do anything to make sure it would be a girl. A week or so later, when I checked in with her on how she was feeling, she gave me a "thumbs sideways" with her hand. You know, not a thumbs up or a thumbs down just right there in the middle. I feel that's probably a very accurate description of how she's feeling right about now.
As I'd mentioned in previous entries, I've really been working very diligently to try to make sure A. was prepared for this inevitability. I would check in with her on the topic every couple of weeks or so just to address any nagging concerns she might have. I've also gone out of my way to do a lot of things that include her, that make her feel loved, and that help her understand just how special she is and how special she always will be to us. We've also been talking a lot about possible names, gifts she could give the sibling, what sort of Pokemon the sibling would be if it were a Pokemon things of that nature. Something must have worked, because A.'s initial reaction to the idea of being a sibling was a highly negative one. Now that the sibling has become an imminent reality, she's a lot more interested, engaged, curious, and invested in the idea. And I must confess, I didn't expect her to be so, even at the level she is currently displaying. I am thankful to have a "thumbs sideways" reaction. At least it's not a thumbs down.
When I got the "thumbs sideways," I took the opportunity to play my favorite game asking her was she likes best and what she likes least about certain topics. When I asked her what she liked best about having a sibling, she said that she liked the idea of being a big sister and of having a sibling. There was a time, when A. was much, much younger, when she desperately wanted a sibling, but I just wasn't at a place in my life where that was a possibility. I think her role as an only child has made her feel, well, rather lonely at times, and I think she sees this as an opportunity to have another familial relationship that will add to that sense of belonging and community that we try to foster and create in our household. When I asked her what she liked least, she explained that she was anxious about a loud, unpredictable child in the house. Specifically, she said, "Babies can be loud and annoying." I explained to her that Thomas and I were anxious about that, too, and that hopefully we'd get lucky and the new baby wouldn't cry too much or be too loud, but of course there was no way to know for sure. Honestly, I think the fact that I acknowledged that it was okay for her to feel annoyed by a younger sibling made her feel a lot better about the prospect, and also that she wouldn't be alone in getting annoyed or aggravated when things did get loud. I think it made her feel like we were on her side, if that made sense. I imagine that will be something she will need more of in the coming months.
And even though A. says she feels "thumbs sideways" about a sibling, that's actually a pretty good commendation coming from A. She can be direct and bluntly honest about how she feels about things, and she only gets incredibly excited or happy about REALLY amazing things. If she's even slightly annoyed by something, she tends to say she hates it, and wants nothing to do with it. So, her admittance to a neutral stance on the subject really makes me optimistic for her acceptance of the entire situation.
And that's not the only reason I feel optimistic. I feel optimistic because, a week after I'd found out, A.'s best friend congratulated me when she came over for a sleepover. I realized then that A. must have shared the news with her best friend almost immediately upon finding out. That meant it was important to her. It also meant, I am sure, that she was looking for advice from someone who has younger siblings and could probably help her prepare in a way that only best friends can. But I found that fact comforting. Then, when A. finally made it to her next Group Therapy session, it was one of the first things she told the group when she arrived. She asks me a lot of questions about it wanting to know if I've settled on a name, making her own suggestions, writing off some of my more "normal sounding" or "mainstream" suggestions and she really seems interested in the experience. I think what I take most comfort in is the fact she's doing this in her own interesting and unique way. A. is not your typical 14-year-old girl, and she's processing and dealing with this entire scenario in not your typical 14-year-old girl sort of way. But it's a process that's perfect to her, to the way that she thinks, to the way that she helps understand the world around her. And I think it's beautiful process to watch.
The other morning, A. sat down with me at breakfast, and she wanted to know about how the ultrasound worked. I'd asked her if she wanted to go to the ultrasound when I found out if it was a boy or a girl, and she said, "Why not?" which, again, is a very positive statement in A.-speak. She wanted to know when that would be, what they would do, and how they could tell if it was a boy or a girl. I answered all of her questions, and was amazed that she'd brought them too me out of the blue, just because she was thinking about it, and just because she wanted to know.
The truth is, I think A. is going to be a great big sister. I think she'll go about it the way she does everything awkwardly, honestly, and courageously and her little sibling is going to see that, and is going to learn so much from that. After all, the rest of us have already learned so much from A.'s unique and amazing way of being. It only makes sense that one more little person will learn the same.
In this final entry from the archives, I delight, once again, in my daughter's amazing, creative perspective.
November 18th, 2008:
I'm having one of those Mommy Moments, and since it doesn't translate well on Twitter, I'll try to transcribe here.
A. is sitting on the other side of the couch, reading from Highlights magazine, talking to me about things she wants to do, people she wants to be like. I sit here on the other side of the couch, with the computer. She reads me jokes; she says she wants a post office, an art studio, an animal shelter, and a classroom in her house, and asks me, "Can you see what you can do?"
As she grows older, she reminds me more of myself in many ways. She becomes obsessed with creative projects, and her room has literally exploded from the pages upon pages she's written and illustrated.
It's just amazing to me, sometimes, to see her now, as this complete person, with her unique and individual personality traits, with her own independent ideas about the world. She's no longer just my daughter, or this kid with autism, or any of the other labels she's been given over the years she's growing up into a whole, complete A., and it's just the Most Amazing Thing in the World.
A. just said, "I guess I'm going to have to write stories to everyone in the whole world! The United Kingdom, Canada, Japan even Egypt!"
There are times when I wonder about the feasibility of this blog in the long-term. When I'm sharing fun adventures, good times, and hilarious hijinks, it's no worse for the wear. My daughter enjoys reading about the adventures, she likes to see what posts I share, and she feels empowered by my words and my ongoing pride in her. If every day were a fun adventure, full of good times, then there would be no issue. But, let's face it this is life, and because of that, you can't have a fun, exciting day every day. In fact, sometimes you have downright sucky days when things seem really bad, when there doesn't seem to be any good news, and when you feel worried and frustrated and deeply concerned.
But the thing is I can't really write about the bad days. Not only would I not do so out of respect for my daughter and her privacy, but she also asks me directly, "Please don't write about this in your blog."
So, I find myself stifled. I definitely can't relate the specifics, but I can't even talk about the situations in a more abstract sort of way. My daughter is quickly developing into a young adult, and she has every right to her own life, her own struggles, her own perspectives, and her own individuality without my constant evaluation and commentary.
On the one hand, I feel as if that's a very good thing for her. It shows that I am giving her respect, allowing her to voice her own opinions and concerns, and stepping aside to allow her room to grow in her own way. In my opinion, that's what every young autistic adult really needs someone to acknowledge them, listen to them the best we can, and do our best to accommodate and support without smothering them with our own assumptions about who they are and who they should be.
On the other hand, I feel as if it is a terrible tactic for my blog. I want to write about the good times absolutely. But I also feel that this blog has had some of its greatest strengths when it is outlining some of the struggles and issues we encounter as a family and demonstrating tactics, ideas, and attitudes that maintain positivity while dealing with difficulties. I just feel as if, as time goes on, I have less and less of a right to express those viewpoints, and, if anything, I need to be more focuses on helping A. advocate and speak for herself.
As such, it's a bit of a conundrum. In the meantime, I'll continue to share the good stories when they happen, and try my best to interject ideas and tactics when they relate to the more commonplace, everyday issues. Still, the older A. becomes, the more ambivalent I feel about sharing these stories in a public forum. Eventually, I will probably to discover a different outlet or a different method of relaying the information.