Tuesday, January 19, 2016

Guest post: Growing Sideways

Back in October, I published a post called "From Raffi to the Wiggles: The power of sideways growth." In it, I referred to a piece written by autistic writer, speaker, and advocate Lydia Wayman. By describing her own developmental trajectory as "growing sideways," Lydia not only provided a valuable lens through which I could view Bud's development, but she also gave me language that helped me explain it to others.

Unfortunately, the link in my post is no longer working, and the site that hosted Lydia's original essay is not currently operational. Lydia has graciously allowed me to post a revised and updated version of it here. (Thank you, Lydia!) It appears in its entirety below.

Growing Sideways

As a young adult on the autism spectrum, I’m a living paradox.  I may have a master’s degree and national recognition for my autism advocacy, but, given the chance, I would choose any Disney movie over boring, typical adult movies, and discussions of home decorating and husbands and fancy dinners hold my interest for… not long enough to even finish that sentence! While there may be other typical young adults out there like me, I become a little more unique in that I love Hello Kitty, stickers, coloring, and I refuse to carry a purse or wear make-up or high heels. I’m used to the shock and “I thought you were in high school!” when someone finds out I graduated over ten years ago.  Developmental delay is a common term for children, but I don’t see a lot out there about our timeline as adults. The difference is evident in skills and independence and many other ways, but one issue gets to me the most. Autistic people of all ages sometimes have interests that normally appeal to people much younger than our chronological age, and the idea of “age-appropriate” is almost enforced on us. I want to tell you that our interests may be different, but that’s not a bad thing!
Typical people follow a certain developmental trajectory.  At six months, babies like pacifiers and blankies.  At six years, kids like dolls and princesses.  At sixteen, teens are all about boys and cars, and at thirty-six, women are focused on husbands and babies.  So it shall be, they say. Says who, I ask?
Autistic people are not made to follow the same developmental trajectory as our typical peers.  It’s not that we follow a delayed version of it—we’re not sucking on binkies when we’re sixteen or having babies when we’re sixty-six.  Instead, our development follows an altogether different path. 
I remember middle school, when my friends became interested in boys and clothes and pop stars.  I’m very literal and straightforward, so I was lost in the cattiness and drama, and yet, I constantly remarked on the “immaturity” of my peers. I thought that maybe the issue was not their lack of growing-up but rather mine.  Now, I realize that they were growing up, yes, but I was growing sideways, onto an altogether different path—an autistic one.  The older I got, the further my path veered from the one everyone else seemed to be traveling.
By sixteen, I had simply had it with the ways of high school hallways and decided to graduate a year early and move on to college.  But, when I got there, I didn’t fit in socially and couldn’t manage my responsibilities.  My executive functioning skills had not caught up with my academic ability.  My social skills made for upsets with professors and other students, and that upset me because I didn’t understand what was wrong.  I tended to miss events and leave partway through classes with total sensory overload, and when that happens, my communication pretty much halts.
I did graduate at 21 with a major in Elementary Education and emphasis in Spanish.  Following graduation, I had services through the Adult Autism Waiver to help me with community inclusion, cooking, cleaning, and organization. I felt constantly held up to a measuring stick in which “normal” was at the top and I was always compared.  It’s not fair to hold the autistic 22-year-old up to the neurotypical measuring stick for the same age.  I have some gifts that far surpass what most can do at my chronological age, but for some services and professionals, it will always by my deficits that receive the focus.  I will never, ever measure up.
I would like to ask the state how they feel when I hold up their young-adult-selves to what I’ve experienced and accomplished in 26 years and ask them how they feel when they come up far short.  I would diagnose them as totally and utterly unexceptional.
There have been times when my interests “grew down.”  I like to stich, so for a while I liked to hand-stitch clothing for my dolls. I never did play with them typically, even as a child, but what if I had… at whatever age?  I have adult friends who play with their childhood toys as a way of working out situations and understanding them better. A few of us like to have a figurine stashed in a purse or pocket for something familiar on hand in case something unexpected happens. I don’t understand why some people want to take away a harmless means of experiencing and expanding our lives. It’s sad to think of autistic kids who are told over and over that they have to hide their happy because someone else might think it’s weird.
On a very snowy, blustery day, I went to see Frozen with my mom.  On the outside, I was an adult in a theater playing a children’s movie. Did I look like I was putting up with it? That’s what adults are supposed to do, right?  But on the inside, I almost wanted to leave the theater, not because I was bored but because some parts were playing out and putting words to things I knew so deeply but didn’t know how to say. They were making other movie-watchers feel for that character the way I felt all the time.
            It's funny how some distance,
            makes everything seem small.
            And the fears that once controlled me, can't get to me at all
            It's time to see what I can do,
            to test the limits and break through.
            No right, no wrong, no rules for me.
            I'm free!
I felt intense empathy (hint, hint) for the princess who felt like a monster who must isolate herself from her loved ones so as not to hurt them, but the song also articulated the amazing freedom and power I feel over the fact that these feelings are now buried in my past.  The power of the music and the stunning visual effects created a surge of emotion within me.  My mom could have said she didn’t want to sit through a kid movie, and I probably wouldn’t have seen it at all. But we both saw it, so I knew she followed the story and had the structure in her mind to understand my experience. We typed back and forth about it, which is always the best way for me to communicate, and I found words to help her understand what I had felt in the years before I typed, and she was able to give me advice and support about those things I’d been carrying most of my life. I thought she didn’t care when things felt awful… I hadn’t realized she didn’t even know.
It’s been two years now, and I still send an email to my mom with my writing when I realize she probably doesn’t know something…why I would put the cat on her when she was sick (they made me feel better, and she likes cats too), why I hate cash registers (don’t like beeping!), why I don’t like a certain department store (the lights are too bright and make the floor shiny and hard to walk on it)… sometimes it’s more serious, though. I was a verbal kid, but my mom has said that my writing has felt like getting to know a different person.
But what if I hadn’t seen Frozen?  What if it had been deemed inappropriate for my age?  What if my mom hadn’t come and watched it with me?  One of the most fundamental things in an autistic life is that people misjudge you all the time… your abilities, intentions, communication…
When you tell an autistic adult that an interest is too childlike, that they need to get back on the path where everyone else there age is walking… you take them off the path of their history and their future, and you take away the chance for that interest to help them process it all—to grow. Maybe I don’t grow up in the same way, but I do a lot of growing sideways, and that’s how I learn to cope and heal and find purpose.
Please allow us the freedom to pursue our own developmental trajectories.  The amazing ability and powerful insights that come from this freedom might surprise you after all.

Lydia Wayman is a young adult autistic writer, speaker, and advocate. She has a B.S. in Elementary Education and M.A. in English and nonfiction writing. Her blog, Autistic Speaks, and other writing supports parents and teachers by finding creative solutions to everyday challenges for autistic kids. In spite of the grim predictions from autism specialists about her adult life, this year, Lydia has earned her master's degree, spoken at national autism conferences, and had her story featured in the Wall Street Journal and on Good Morning America.

Thursday, January 07, 2016

Old friends

I started writing this blog in 2005, the year Bud started Kindergarten. In the early years, I wrote a lot about his experience at school. Our school district uses an inclusion model, and so throughout elementary school, Bud was the only autistic child in his classes. Though inclusion is not the right model for every child, it was wonderful for Bud - and, as I wrote frequently in those years, it was also wonderful for his non-autistic classmates.

Throughout his elementary school years, I often wrote about those classmates - always using pseudonyms and removing identifying information. Some of them made reappearances from year to year. But one of them stood out from all the others and appeared on the pages of this blog again and again and again: Kelly.

Kelly and Bud met in first grade, when my anxiety about sending Bud off into the hands of strangers for a full day was at an all-time high. They bonded immediately. I cringe now when I read my posts from that year and see how flippant I was about the bond they were building. I considered it puppy love, failing to recognize that these two, even at six years old, were already savvy enough to be doing the work they needed to do to build the solid foundation for a lasting friendship.

The summer after first grade, when, unbeknownst to Kelly, Bud's world was being rocked by his father and me separating and then divorcing, Kelly reached out to Bud - a friend, touching base and connecting.

In second grade, it was an interaction with Kelly that made Bud concerned that his friend was upset with him, until he learned that it was not as serious as he'd believed. It was Kelly who sought him out on a class field trip, and Kelly who prompted me to write, "Inclusive education recognizes that it takes a village to raise a child. It recognizes that Kelly and Tom and the other children in the class are an important part of the village that is raising Bud. And - more to the point - it recognizes that Bud is an important part of the village that is raising Kelly and Tom and the other children in the class. They need each other, and they know it."

Kelly sent Bud off for the summer before third grade with another letter, and while she didn't appear much on the blog that year (as there were not many blog posts written that year), she reemerged with a vengeance in fourth grade, when she was part of the magical class that started the year helping Bud celebrate his tenth birthday (with Kelly writing a note that said "You are one of my best friends") and ended the year so committed to understanding Bud that they prompted the Hairdryer Kid series.

After that series, aware that Bud's peers knew about my blog and knew it was about him, I wrote sparingly about school, but despite her absence from the blog, Kelly continued to be a major player in Bud's world. As they transitioned to middle school - a much larger school, with a greater number of children - Bud and Kelly saw each other less frequently. We still looked for Kelly and her family, though, at every orientation session and every open house - the friendly faces in the crowd, the ones always quick to greet us and always happy to see us. Several years into middle school, Kelly's mom contacted me. Kelly had witnessed an interaction between Bud and another person at school that hadn't seemed right to her, and they wanted to pass the information on to me. It didn't seem right to me either, and thanks to Kelly, I was able to intervene before the problem got any worse.

At the end of eighth grade, when Kelly and the rest of Bud's peers prepared to transition to high school, we made the decision to have Bud spend a year doing some sideways growth (another story for another time, since it's worthy of its own blog post). Bud did spend some time at the high school that year, though, and virtually every time he did, among the questions asked (by me) and answered (by him) were, "Did you see any kids you know? Did you see Kelly?"

This past summer, as Bud prepared to transition to the high school full time, and as I kick-started the blog again, Kelly sent me an email, congratulating me on my marriage and letting me know that she missed seeing Bud. She wanted me to know how much of an impact he'd had on her and on how she sees the world. She wrote, "I've learned so much from him without him even knowing."

A short time later, Kelly transferred to a different school, so even though they would have been in different grades anyway, they no longer had the opportunity to even run into each other in the hallway. And then, a few weeks ago, I got an email from Kelly's mom. Kelly's sixteenth birthday was coming up, and she wondered if we could come.

Bud is typically not much of a party guy, so I didn't want to answer on his behalf. Later that day, I asked him about, and without hesitation, without missing a beat, he answered, "Oh, sure! I would love to!"

So, last week, Bud and I headed out one evening to Kelly's house for her birthday party. I thought we'd probably be there briefly, but, as is so often the case, my assumption was wrong. Bud was delighted to be there. And Kelly was delighted to have us there. Her mom decided to surprise her and didn't tell her we were coming, and when she opened the door and saw us, she said, "I think I'm going to cry!"

It was a wonderful evening. Bud made comfortable conversation with Kelly and her other guests. He met her pet rabbit. We ate dinner and snacks and took pictures, and marveled at the beautiful cakes, cookies, and cupcakes that Kelly's mom had made - with hand-detailed images of Kelly's favorite characters from Japanese animation. And after we'd been there for a bit, I listened to the music playing in the background and realized that at some point, with no fanfare or announcement made, Kelly had changed the soundtrack from her own favorite music, Nirvana, to Bud's favorite music, Dierks Bentley.

Later, as we drove home from the party, I thought about how far these two have come. For ten years, from six to sixteen, they have stood by each other, each allowing the other to become exactly who they are, free from judgment, free from expectation, and brimming with appreciation and support. That is exactly what friendship is supposed to be.

May the next ten years be filled with more of the same for both of them.