Monday, January 30, 2017

On politics and marathons

Well, it has been quite a week.

The Bannon-Trump executive order tsunami has been nothing short of a shock-and-awe campaign. It's designed to overwhelm and intimidate. It's orchestrated to create chaos. It marries destruction with deception and distraction.

More importantly, its intent is to fatigue us. Its goal is to make us say "Enough. I am not reading another political post. I'm blocking the friends who continue to post political rants. I'm out."

The new administration has used large scale egregious assaults on the fundamental tenets of our democracy to mask lower-profile self-serving maneuvers. They know we'll feel compelled to focus our energies on the violations that threaten the nation's founding principles, and they hope that in doing so, we will have to let some lesser grievances slide.

They believe they can wear us down - make us turn on each other - make us collapse in a heap of resignation and defeat.

They are wrong.

There's a thought that has been going through my head all week. It's the same thought that carried me though the early years of Bud's autism diagnosis: "It's a marathon, not a sprint." The Bannon administration has been sprinting through the first week in office, but we, who resist them, must stay focused on the long game.

What does that mean? It means we stay mindful. We launch immediate counter-attacks on the most egregious violations, but we don't lose sight of what's going on behind the curtain.

It also means we pay attention to our own personal sustainability. We don't try, individually, to fight every issue every day. We communicate, we share information, we take leadership on some issues, and simply lend support on others.

We take breaks. We rest. We post pictures of our dinners on Facebook. We share our joys and our trivia along with our outrage. We don't judge each other when we post vacation photos or memes about our favorite albums in high school or videos of cats (especially not videos of cats).

We understand what it takes to finish the race. We react, we resist, we rise, we rally, and we rest, each as we must.

While you call Senators, I binge on Gilmore Girls. Then I'll write postcards while you get a pedicure or watch the Super Bowl. That is how we win this thing.

It's a marathon, not a sprint.

Today, I'm reading this article to stay informed, though it puts a knot in my stomach. I'm also encouraging friends to call their Senators to urge them to oppose the confirmation of Betsy DeVos, because she poses a threat to public education and, specifically, to the rights of children with disabilities.

Next time, I'm going to take a break and tell you a story about the best thing that happened to our family in 2016. It's not about politics. It's not controversial. It might even make you feel good.

If it does, and if you have it in you, maybe you can run the next leg.

Wednesday, January 25, 2017

Hope, fear, and the new year

So, 2016 was a kick in the teeth, huh?

Between the heartbreaking loss of so many of the icons of my youth and the heartbreaking win of Donald Trump, the year had little to redeem it. On a much more personal level, it was also the year that we lost Henry - and for that, I will never forgive 2016.

I turned fifty in 2016 as well. Fifty years of life on the planet - my golden anniversary - my golden jubilee. You might imagine that it was a significant milestone for me, but honestly? Not so much.

I was blogging regularly ten years ago when I turned forty, and I wrote this post about the tailspin it caused for me. Turning forty was a Very Big Deal. At the time, forty seemed a thousand years away from thirty-nine. Fifty was different. The move from forty-nine to fifty felt just about as momentous as the move from forty-eight to forty-nine. For the most part, it was a whole lot of meh.

It's interesting, though. These days, when I read the birthday post I wrote ten years ago, I'm struck by what I thought would happen as I approached fifty. I wrote:

This aging thing is confusing. It's a big blurry mess of flash-forward/flash-back. And here's the greatest irony of the whole thing: I've got less than 48 hours left of my thirties, and instead of enjoying it while it's here I keep studying pictures of my current face, examining the new crinkles around my eyes, the extra skin that seems to be growing on my neck. And I imagine myself ten years hence, stumbling across these pictures and examining them again, startled by what I see:

My god, I'll think. I can't believe how young I looked.

But that's not what happened at all.

When I look at pictures of myself from that time, I am not struck by my youthfulness. To be sure, the fact that the now-mature me has learned the benefit of getting one's hair professionally colored instead of using a home-coloring kit may have something to do with that. But when I flip through pictures of myself at forty, I don't think, My god. I can't believe how young I looked.

I think, My god. She has no idea what's coming.

She really doesn't.

Her life and my life are very different. She and I are both married, but to different people. She has a seven-year-old and is struggling to come to terms with the fact that he will never have a sibling. I have a seventeen-year-old who has a five-year-old stepbrother. She reaches out to her friend Gretchen to compare notes, because Gretchen's son Henry is so much like Bud. I reach out to my friend Gretchen with woefully inadequate attempts to console her in the wake of unimaginable loss. She thinks that her President, George W. Bush, is as bad as a President can be, and she can't wait for his term to end. I would give anything to have George W. Bush back in office right now.

But we do have something in common: She has no idea what's coming, and neither do I.

The thought is both terrifying and inspiring. Just five days into Donald Trump's presidency, I am already in a panic about Bud's future in Trump's America - about how the educational system might change, about how funding might disappear, about how services might be impossible to attain. Bud will turn eighteen this year. He will age out of the school system in just over three years. We have already begun submitting paperwork for services that Donald Trump has vowed to cut. I'm terrified.

And yet, last weekend, Bud and I attended a local rally affiliated with the Women's March on Washington. Crowds are not usually Bud's thing, but I explained to him that the rally was to remind Donald Trump to be kind and to make good choices. Bud, who understands the importance of being kind and making good choices, agreed to go with me. In fact, he said, he'd like to make a speech.

So, on Saturday morning, we joined our local rally - modest as compared to many others around the country and world, but huge for us. We heard one of our fabulous Senators inspire the crowd. We signed our names to show that we were there. We browsed the tables and picked up stickers and pamphlets. We stayed at the edge of the crowd, but the energy enveloped us and we felt a part of something big. We found a spot on the sidewalk outside the State House, and I pulled out my phone to videotape as Bud gave an impromptu speech. We weren't there long - crowds are not Bud's thing - but we were there long enough.

After we left the rally, we went to lunch and I checked my Facebook feed to find it overflowing with posts from friends who were at marches, either in person or in their hearts. I was overwhelmed, and for the first time since November 8, I felt inspired. I felt hope. And if my first fifty years have taught me anything, it's the power of hope.

Today, I learned that we lost Mary Tyler Moore, a beloved icon of my youth, which suggests that 2017 is thinking about giving 2016 a run for its money. I have no idea what's coming. But I do have hope. And as I learned from Rogue One, the movie I saw to kick off 2017, the movie that made me think constantly of my friend Henry, "Rebellions are built on hope."

Bring it on, 2017.

Saturday, May 14, 2016

Anger, acceptance, and the space between

It has been just over two weeks since we got the news that our dear friend Henry died. He was at home, in his room, with his family. It was peaceful, and just as it should have been - though, of course, it was not at all as it should have been.

His mom, Gretchen, posted the news with this beautiful graphic:


Her grace continues to astound me.

I have spent the past two weeks thinking of that small, quiet room - being grateful for it. As Gretchen has since explained, Henry's family has been grieving for a year, since his tumor was diagnosed. They have been through all of Kubler-Ross's stages of grief: denial, anger, bargaining, depression, and, now, acceptance.

For me, half a country away, even with regular updates from Gretchen, it was easy to stay in denial. Even when I knew there was nothing else to be done, I continued to think that something would happen to change the inevitable outcome.

It didn't, of course, and so I have made the leap from denial into anger.

I keep going back to this post from 2008. Our friend Vicki had just lost her son, Evan, and our blogging community was reeling. I realized for the first time how much these people who lived in my computer meant to me, and how emotionally vulnerable it made me. I wrote, Gretchen commented, we all grieved. But, of course, we had no idea that we would find ourselves here eight years later.

Back in 2008, as I reflected on our friendships and interdependence in the aftermath of Evan's loss, I wrote, "Now, suddenly, coexisting with the vulnerability, there is strength; with the fear, there is assurance; with the grief, there is joy." I'm struggling to find that balance now that we've lost Henry. I know they must be there somewhere - the strength, the assurance, the joy. But I'm just not able to be philosophical yet. For now, it just feels completely unfair. For now, I am just really, really angry. And anger is a vast, echoing cavern.

The only thing that is tempering that anger right now is love - love for Henry, love for Gretchen and the rest of her family, and love for my blogging friends as we continue to hold each other up through our darkest times. I am grateful for you, friends, and thankful to have a community that will gather in support, whether in vast caverns or quiet rooms.

And Gretchen, I hope you know how much you are loved, and how much Henry is missed. We will be always be here for you, and we will always remember, and celebrate, him.

(The quote that appears in the graphic is from Cheryl Strayed.)

Saturday, April 02, 2016

Awareness, acceptance, advocacy, action

It's April 2, the day that the United Nations has designated World Autism Awareness Day. My social media feeds are buzzing with blue lights and puzzle pieces. I've chosen to avoid these particular icons, because I believe they have more to do with brand awareness than with autism awareness, and the corporate-aligned brand they represent is one that runs counter to many of the things I believe strongly.

I'm all in with the UN, however. Their theme for World Autism Awareness Day 2016 is "Autism and the 2030 Agenda: Inclusion and Neurodiversity." Their website reads:
Autism and other forms of disability are part of the human experience that contributes to human diversity. As such, the United Nations has emphasized the need to mainstream disability in the Organization’s development agenda. Mainstreaming disability requires an integral approach in the design, implementation, monitoring and evaluation of policies and programmes in all political, economic and societal spheres, so that inequality is not perpetuated.
It also features a quote from UN Secretary-General Ban Ki-Moon: "On this World Autism Awareness Day, I call for advancing the rights of individuals with autism and ensuring their full participation and inclusion as valued members of our diverse human family who can contribute to a future of dignity and opportunity for all."

Now, that's the kind of autism awareness I can get behind. In fact, it is much more in keeping with the philosophy of the Autistic Self Advocacy Network's Autism Acceptance Month movement, whose website has a "focus on sharing positive, respectful, and accurate information about autism and autistic people," than with that of Autism Speaks, which has both a much larger platform and an Awareness Day website full of pathologizing words like "diagnosis," "symptoms," "treatment," and "prevalence."

Around here, we are on the Acceptance bandwagon, and we try to implement ASAN's Autism Acceptance Month slogan, "Acceptance is an action."

Acceptance starts with awareness, of course. Just this week, we had an experience that quite literally brought the idea home, and highlighted the importance of all of it: awareness, acceptance, advocacy, and action.

Monday afternoon I was at work, and my phone rang. It was Bud. He had just gotten home from school and he was sad. Not dysregulated. Sad. He was thoughtful and articulate and he was calling because there was something that he wanted to talk about.

"I didn't have a very good day at school," he said.

I asked what happened, and he explained that this week is Winter Carnival Week. "But I didn't KNOW it was Winter Carnival Week," he said, a hint of anxiety creeping into his voice. I understood what was unspoken in his words - "fun" days at school are rarely fun for Bud, especially if he doesn't see them coming.

He said that he got in trouble for running away from the talent show assembly in the auditorium, and said that his teacher was "very cross" with him. Running away - bolting from his classroom and, sometimes, from the school itself when his "fight or flight" defenses are triggered - has been an ongoing safety concern.

"But I didn't try to run away," he explained. "I tried to get back to Gateway." "Gateway" is Bud's home base - his safe haven - his shelter from the storm at the high school.

I asked what bothered him at the talent show, and he explained that it was "all the noises." I asked what happened next and he said he burst into tears.

My heart broke. From his version of the story, the scenario was clear to me. The auditorium, on this first day of Winter Carnival, was a sensory nightmare for Bud. His brain sent the "danger" signal to his body. He was overwhelmed. He had to get out.

I asked who was with him in the auditorium and he named one of the paraeducators. I asked if he told her that all the noises were bothering him. He answered, "Yes, but she said, 'you're going to love it.' She didn't answer me."

My heart broke again. He did what we've been telling him to do. He advocated for himself. He told someone what he needed. And it didn't work.

Bud knew - as I knew - that staying in the noisy auditorium was not an option for him. Had he stayed, the issues would have escalated. He needed to leave, so he left and he headed to the place he's been told is his safe space. On the way, he encountered another teacher who did not have the context for the current situation, but was aware of the ongoing issues involving "running away."

Bud told me that he got in trouble, and he worried about what his teacher thought. "I don't think she'll be very happy to see me tomorrow," he said, scripting, but nailing his emotions in the words. "Maybe if I apologize," he said.

I told him that if he said or did anything rude or mean, then an apology was important. But, I said, if he was doing his best, and doing what he had been told to do, then it was more important to talk about that - to find out what he could have done differently to not "get in trouble." I asked him if he'd like me to email his teacher to explain what he told me and ask her if she would talk to him about it the next day so that they could come up with a plan.

The relief in his voice on the other end of the phone was palpable. "That would be perfect," he said.

I sat down and wrote to Bud's teacher, recounting Bud's version of the day in much the same way that I've recounted it here. I asked if there was an alternate version of what had gone on, and I explained that, from my perspective, Bud was sincerely confused by what had happened. He genuinely wanted to talk about the fact that he'd wanted to do the right thing, but that it ended up being the wrong thing, and in the end it had ruined his day.

I told her that, to me, the issues at the core of this situation were sensory overload, recognizing his own reactions to outside stimulus, and self-advocating appropriately for what he needs. "I think," I wrote, "that he truly wants to know what the right response would have been, given that staying at the talent show was simply not an option for him."

Bud's teacher replied to me the next day, after she'd spoken to Bud. The incident, she said, was "all staff error." She apologized, and acknowledged that though we all try to do our best, we sometimes miss the mark. In this case, Bud was not offered the support he needed, when he'd clearly expressed that need. Her conversation to process the incident with Bud had been a good one, she said, and they'd developed a plan together.

The rest of Winter Carnival week went off without a hitch. Bud knew what to expect and he made his choices accordingly. On America day, he decided to wear orange instead of red, white, and blue, "because I like orange." (And what, I ask you, is a better way to celebrate the American spirit than to exercise our individual rights?) He was back in a crowded environment on Friday for obstacle course relay races, which he thoroughly enjoyed. (He was invited to participate, but declined. He preferred the role of spectator.)

So, there it was, all in one week: awareness, acceptance, advocacy, action.

It started with the awareness that because he is autistic, highly stimulating environments filled with multi-sensory input - especially those he does not anticipate - can be overwhelming to Bud.

That awareness was followed by acceptance - the understanding that this sensory reaction is not wrong, not bad, not something that must be corrected. It is simply something that is a part of Bud - something that needs support and accommodation.

And advocacy - Bud was a CHAMPION of self-advocacy this week. Right there, in the moment on Monday, in the midst of sensory integration issues, Bud advocated for himself. When his needs went unmet, he assessed his options, and made a choice. When it didn't work out the way he'd anticipated, he didn't simply accept that he had done something wrong. He furthered the conversation. He explained his rationale. He asked for clarification. He articulated his needs - and it worked.

And then the action. That's the key, right? Acceptance is an action. Bud took action. I took action. The staff at school took action. We all learned something, and most importantly, Bud was empowered and his perspective was respected and reinforced. We listened to him, and we worked with him, and he got to experience the rest of Winter Carnival independently and in a self-directed way, with the supports he needed to make it happen.

And one other piece of action. Before I started writing this post, I asked Bud about it - as I do now every time I want to write about him. I told him that I'd like to tell this story on my blog. I told him I hoped that it would remind people to listen when autistic people tell them what they need - to listen, and then to act, and help them get those things. I told him that I wanted to check with him to make sure it was okay for me to write about it. And then I asked him what he thought.

He answered without hesitation: "I think that would be great."

Awareness. Acceptance. Advocacy. Action.

Let's make it a good April.

Friday, March 18, 2016

Time and time again

It's that time of year again. The swallows are returning to Capistrano and I am sending an email like this:

Dear Bud's teacher,

I'm sorry to hear that Bud has been having a tough week at school. I have to admit, I'm not entirely surprised. As I think we've discussed before, Bud typically struggles after the Daylight Saving Time change. I'm not sure if it's because his body is adjusting to meds at a new time, or because he's having sleep disturbances related to the time shift, or because he's feeling dissonance from being asked to do one thing when his biological clock is telling him that it's time to do another. I suspect it's probably a combination of all of that.

Whatever the reason, whether we gain an hour or lose an hour, it's inevitably dysregulating for Bud. I'm hopeful that things will improve once he's fully adjusted to the time change. Please keep me posted.

All the best,

MOM-NOS

I have to say, I don't blame him a bit. Is there anyone who doesn't get thrown off by Daylight Saving Time? And as for the issues at school, as my friend Kiki says, Bud is just actually doing what the rest of us really want to do.

Let's hope the coming weekend gives us all a much needed re-set.

Please note: The information in this post is shared with Bud's express permission.

Thursday, March 03, 2016

For Henry

I want to tell you about my friend Henry.

If we're connected on Facebook, you may have seen some posts from me asking for thoughts and prayers and a universe of good wishes for Henry, who was diagnosed with a brain tumor last April. It has been a long hard ten months, and Henry is very tired. So today, though I want you to continue to send him thoughts and prayers and a universe of good wishes, I don't want to talk to you about cancer.

I just want to tell you about Henry.

Henry and I have never been in a room together - we have never actually met - but I know him. I know him on a heart level, which in my world is the only level that really matters. I love this boy more than I can possibly express.

I was introduced to Henry when he and Bud were six years old. His mom Gretchen and I had both recently started blogging about our sons and their autism, and when I started reading about Henry, I felt like I'd found our tribe.

Because here's the thing: of all the children I have ever known, autistic or neurotypical, Henry is the one who always, consistently, beautifully, mindbogglingly reminds me most of Bud. Before I knew Henry, I'd encountered other kids on the spectrum, and though I saw glimmers of similarity and recognized areas of overlap, I'd never found anyone who was quite like Bud. Until Henry.

By looking at Henry and seeing Bud, I was able to recognize that many of the things I'd written off as quirks unique to Bud were actually things that were related to his autism. I began to see that many of the things I might otherwise have labeled as issues or problems were, in reality, essential elements of who these boys were and of how they were wired. For the first time, I was able to recognize, by comparison, that my son was on a very typical path of development for his particular atypical brain.

I met Gretchen and Henry in 2005, at a time when autism was just making its way into the popular press, mostly through dark stories weaving tales of misery and hopelessness and despair. In those days, if you were new to both autism and the just-emerging world of social media, it was easy to get distracted by misguided people trying to peddle "cures" or convince you that you needed to save your child through full-time models of compliance training and dangerous interventions like chelation.

But luckily, I found Gretchen and Henry, and as we compared notes, I felt empowered to reject the scare tactics and recognize that, really, at their core, our boys were just plain cool. And, before long, before we'd ever heard the word "neurodiversity," we discovered a whole new paradigm for looking at autism. We discovered that it held gifts. And joy. And connection.

As I watched Bud and Henry progress in parallel, I was able to recognize milestones I might otherwise have missed, and I was able to see beauty in the smallest of movements. Because of Henry, I was able to view Bud, and Bud's autism, in a totally different way.

From their earliest days, Henry helped me to see that both Bud's pronoun reversal - his "you don't want to go to the playground" when he didn't want to go to the playground - and his use of scripts from his most beloved tv shows and movies were important stepping stones on the path to language acquisition.

He helped me to understand that hands are important communication tools, and helped me to see that sometimes when people put their hands on their ears, it's not because they're trying to escape; it's because it helps them to engage.

Henry helped me learn that there is power in choosing whether to frame something as an "obsession" or as a "passion," and that respecting an individual means respecting his passion. (He also helped me to understand that DVD cases and the papers they contain are as important - and sometimes more important - than the material that's on the DVD itself.)

He helped me to learn to respect that to a collector, there really IS a difference between the DVD you already have at home and the DVD of the same name that is begging to be checked out of the library.

He helped me to learn that challenging behavior is not a sign of a lack of progress, and that sometimes we need to take a step backward before we can move ahead. He helped me to learn the value of having space to regroup and time to develop.

Henry has helped me learn and learn and learn. 

In the ten years that I've known him, Henry has made me laugh, made me cry, and made my heart soar. I am a better parent - a better person - because I know him.

So, here's what I need you to know. If I have ever written anything that has made you think about autism differently, offered a different perspective, or sparked a new idea, then Henry has had an impact on your life, too. My understanding of autism and my understanding of Bud are inextricably linked to Henry. Though he doesn't know it, Henry has given me a gift beyond compare.

So can you do me a favor and help me celebrate Henry right now? It doesn't matter how you do it - post a comment here, give a "like" or a "love" or a "wow" on Facebook, share this, write a post of your own, watch a Disney movie (Henry's favorite), or shout to the sky to give thanks for this boy. Just celebrate him powerfully - celebrate him long and loud and hard, until the earth starts shaking from the joy of it.

I love you, Henry, and I always, always will.

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.

Monday, December 14, 2015

Smart cards

So much to fill you in on, blogosphere friends. Bud has had a stupendous first semester of high school, and there are many stories just itching to be told.

Alas, they will have to wait, as 'tis the season and there are other, more pressing things that need my attention - the wrapping, the baking, the last minute how-could-I-have-forgottens, and, of course, the sending of the Christmas cards.

It's that last bit that made me step away from all the other pressing to-dos to tell you a story that's about a year old, but whose time has come.

You see, last year, many of my friends did not receive a holiday card from me. Instead, they got an e-mail - and this is what it said:

Hi friends,

If this were a blog post, it would be titled Why You Are Not Getting A Holiday Card From Me This Year.

As always, it’s a long story.

Though the task kept getting shuffled to the bottom of the to-do list, I actually did order cards this year. This was a big year, after all, and it’s the first year that I planned to send a card from my new family – Bud and me, and Brian and his son Buster. I’d hoped to get a picture of the two boys together in front of the tree, but that Christmas miracle never happened (as Buster continues to be 3 and Bud continues to avoid 3-year-olds), so we had to settle for separate, but happy, pictures of the boys.

Anyway, we only had one weekend while the tree was up and Buster was here, so I scrambled to get the picture taken, the card designed, and the order placed, remembering to order a bunch of the Happy Holidays version in addition to a handful of Merry Christmases.

The key word in that last sentence, of course, is "scrambled."

Honestly. I scrambled.

The cards arrived, giving me about 48 hours to get them in the mail and have them get to their destinations in time for Christmas. I was feeling undeservedly smug, and I proudly showed the fruits of my labor to Brian, as I awaited the adulation I was sure would follow.

Instead, he took one look at the card and said, “Oh no. Did they do that or did we?”

And then I looked again, more carefully, and discovered that I’d transposed the vowels in my beloved fiance’s name, and while he is certainly an intelligent man, he was not fond of the idea of having our cards go out from Mary and Brain and the kids.

So, the handful of Merry Christmas cards that arrived free of typos have gone out to the aunties and uncles and Christmas card purists, and this heartfelt, but paper-free wish for a happy holiday goes to the rest of you – those I know will understand; those who love me despite – perhaps because of – my unflagging propensity for human foible.

Happy holidays, my friends. Happy Chanukah, Merry Christmas, Bright Solstice, and truly, all good things in the year ahead. I don’t know what I’d do without you.

Much love,

Mary (and Brain)

P.S. See what I did there?

Monday, October 26, 2015

Caveat lector

Blogging has changed a lot since I started doing it ten years ago. Back then, most of my readers were regulars – the same handful of people who made the rounds of the same blogs I was reading. We had continuing interaction and conversation in a variety of locations on a variety of subjects. At that time, in most cases, it was safe to assume that people reading one of my posts had read other posts of mine as well.

Not so anymore.

Social media has changed the nature of blogging. If I want anyone to know I have a new post up, I pretty much have to post the link on my blog’s Facebook page. (I guess I could tweet it, if I didn’t loathe Twitter so much.) Once the link has made its way into social media, it takes on a life of its own. It gets posted elsewhere, people see that a friend has “liked” it, and they click to see what it is - and suddenly a large number of my readers are reading a single post in isolation, without any context about me, my writing, or my life.

This isn’t a complaint. It’s just an acknowledgement of a new dynamic – a new reality.

Back when despite being on the internet, the blog felt more insular, I did a lot of meta-communcation – writing about writing, blogging about blogging. I did a lot of deconstructing – reminding people of what I was not writing, and why. I’m guessing that many of my current readers haven’t read most of that writing, and so, here is a bit of a recap, ten years on.

1. Everything I write is true, but there are many truths that I don’t write about.
Everything you read on the blog has actually happened. If I say that Bud did something, you can count on the fact that he did it. But there are many, many, many things that happen in our lives that do not, and will not ever, make it on to the blog. They’re private.

2. If you only know Bud from the blog, then you don’t know Bud.
See #1. Here on the blog, you are getting a glimpse into a portion of who Bud is. He has greater dimension and more complexity and, I’m certain, he is far more interesting in real life than he is on the blog. Please do not make assumptions about his “level of functioning” (whatever that is) based on what you read here.

3. I make no attempt to universalize my experience or Bud’s experience.
As the saying goes, “if you know one person with autism, you know one person with autism.” I can only speak to my own experience, and I am not suggesting that your experience (if you have a child with autism) will look anything like it. As is true with every other element of the human experience, your mileage may vary.

4. If it sounds like I’m telling you what to do, it’s because I haven’t written it well.
This blog is not a “how to.” I don’t give parenting advice and I try hard not to be prescriptive. Anything here that sounds like parenting advice is reflective of my inability to phrase my story well, and not of my intention to tell you what to do. I don't pretend to have the answers.

5. I won’t apologize for being positive.
I am not trying to “whitewash autism” (and I apologize for the use of that phrase, but it’s the one I keep reading in the current press). My blog has a focus on the positive, because that is who I am. My life off-blog also has a focus on the positive, despite the fact that I have experienced some really heartbreaking things. If I were a different sort of person, I could write a different sort of blog, which would be equally true. (See #1 above.)  But I'm glad that I'm not, and that I don't.

So, there you have it. Caveat lector. Let the reader beware. Remember that anyone with a computer and an internet connection can write a blog. I’m just a person who loves her son and wants to share some pieces of her story.

Your mileage may vary.