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.

Tuesday, October 20, 2015

From Raffi to the Wiggles: The power of sideways growth

When Bud was four years old, he was a huge fan of Raffi. Okay, he's still a fan of Raffi - but now, he's a fan of Raffi in addition to a hundred other things. Back then, Raffi was part of an exclusive circle. As a result, we spent a lot of time in those days listening to Raffi's music and watching Raffi's concert videos on VHS. So, when we learned that Raffi was doing a show in Boston, a mere two hours away, we scooped up tickets to take our preschool boy.

The trip to the show was an event in itself - we little country mice packing up for a trek to the big city, with a boy who still required us to pack for a three-hour event as though we were going away for a weekend. But we did it. We braved the Boston traffic, magically found parking, and then walked our boy through the sights and sounds of the city until we got to the concert venue.

It wasn't until we were in our seats that it all started to fall apart.

I couldn't tell you the details if I wanted to. One of the lovely things about being me is that I simply don't retain the specifics of the bad stuff. I remember it in a global way, but I just don't hang on to the moment-by-moment hard times.

So, I know this. By the time Raffi took the stage, Bud and I were sitting in a quiet corner of the lobby, where I was trying, mostly unsuccessfully, to calm his anxiety and sooth his fear. We made a couple of attempts at re-entry, but ultimately, we ended up making the trek back through the city streets, back to the car, and back on the long ride home, without having heard a single note of Baby Beluga - or anything else.

I thought of our Raffi experience earlier this year when, once again, Bud and I ventured out to see another musical favorite, Laurie Berkner.

This time, the experience was completely different.

Though Laurie's audience was as raucous as Raffi's had been all those years ago, Bud hardly seemed to notice the chaos. He was unfazed by the preschoolers shrieking and dancing all around him. When beach balls started bouncing through the audience, he reached for them to swat them away. When Laurie asked a question, he gleefully shouted an answer. And when Laurie asked him to sing along, he joyfully belted it out. And, throughout the performance, he kept notes - or, more accurately, he instructed me on the notes that I should keep, recording each song in order so that he would be able to use the information later.

We had a wonderful time.

A few months later, we learned that the Kratt Brothers were coming to town. (Do you know the Kratts? They are currently the stars of the PBS series Wild Kratts, but they always be "the Zoboomafoo guys" to Bud and me. We've been fans for a long, long time.)  Bolstered by our success with Laurie Berkner, I purchased tickets to both the show and the meet-and-greet that followed it.

Bud had as much fun at the Wild Kratts show as he'd had at Laurie Berkner, but the meet-and-greet was the real draw of the day. We waited in a long line full of very little kids, and when it was his turn, Bud had solid one-on-one time with each of the Kratt Brothers. First, he met Chris.

"What's your favorite animal?" Chris asked him.

"I like dogs," replied Bud. (And, not for nothing, does anyone remember THIS?)

"Oh, do you have a dog at home?" Chris asked.

"Nope!" said Bud.

"You just like them?"

"I sure do!"

Chris signed a picture for him, and then noticed that Bud had brought a book from their first, pre-Zoboomafoo show, Kratt's Creatures.

"Do you want me to sign your book, too?" he asked.

"Sure!" Bud beamed.

And then we were on to Martin. He started chatting with Bud, then noticed the book Bud was carrying.

"Hey! That was our very first book!" he said.

"Yeah!" Bud said, and handed Martin the book so that he could sign it, too.

"Do you have any questions for me?" Martin asked while he signed.

"Yes," said Bud. "Is blue your favorite color?"

"Yes it is!" said Martin. "That's why I always wear a blue shirt!" Then he looked at Bud, and said, "You're wearing a purple shirt. Is purple your favorite color?"

"YES!" said Bud, delighted that he'd guessed right. (And it was only then that I wondered if Bud has planned his outfit, knowing that the Kratts would be wearing their favorite colors, too.)

They chatted about Bud's favorite Wild Kratts episode, and then we headed out. Bud was over the moon.

In the car on the way home, Bud informed me that The Wiggles would be coming to town in a few months. On his birthday.

I booked the tickets the following week.

Last month, on Bud's sixteenth birthday, we headed back to the theater for the Wiggles show. We had our notebook in hand to capture the set list, which would be used to make future PowerPoints. I had my camera at the ready. We were good to go.

On the way to the show, Bud said casually, "I can't wait to meet The Wiggles."

I could feel my panic start to rise. "No, Bud," I said. "The Wiggles aren't having a meet and greet. It's just a show."

"Okay," he said. "We'll see."

"No, Bud," I said, more firmly. "Seriously. We're just going to sit in our seats and watch the show. We're not going to meet them. No one is going to meet them. I don't want you to be disappointed."

"Okay," he said.

"I need to make sure you understand, Bud," I said. "We're not going to meet them. Do you understand?"

"I understand," he said. And then he looked out the window and added quietly, "But we'll see."

We made it to the theater and I recognized instantly that Wiggles fans, as a whole, are even younger than the fans of Laurie Berkner or The Kratt Brothers. For the most part, they seemed to be under five. If Bud noticed, he didn't mention it, and it certainly didn't seem to bother him.

As we made our way through the lobby, a familiar-sounding shriek drew my attention. I looked over and saw a mother with her preschool son. He was upset. Profoundly, inconsolably upset. I don't know them and I don't know their story, but the tableau looked very familiar.

We lost sight of them as the crowd buoyed us along, and soon we were in our seats and the show was starting and we were singing and shouting along with the other fans in the crowd.

If I'd done any research at all, I'd have learned that The Wiggles have some predictable shtick built into their show, and I would have come to the show more prepared. For example, many of the kids in the audience were holding roses - real roses, plastic roses, paper roses, whatever. As it turned out, there was a point during the show when the Wiggles left stage and wandered through the audience collecting flowers for Dorothy the Dinosaur.

As it happened, the family sitting next to us had come prepared. Wiggle Lachy made his way over to get their flowers and, since Bud was sitting on the aisle, Lachy had to lean over us to talk to the little girl, ask her name, and thank her. Then he stood up right next to Bud, and started to scan the audience for more flowers.

Bud saw his opening. "Hi, Lachy," he said. "My name is Bud."

Lachy looked down, and if he was surprised to see a sixteen-year-old fan looking back at him, he didn't show it. Instead, he tucked the flowers he was carrying under his arm and he held out his hand.

"Hello, Bud," he said, with a handshake and a smile. "Are you enjoying the show?"

"Yes, I am," Bud answered, with a firm handshake back.

"Good!" Lachy said. "It's very nice to meet you."

"It's nice to meet you, too," Bud replied. And then, Lachy was off. Bud turned to me with a smile and said, "I met Lachy, Mom!"

My mind flashed back to our car ride and Bud's hopeful "we'll see..."

Then it flashed to the family we'd seen in the lobby when we arrived. The family with the child who was frightened, or overwhelmed, or just simply could not handle it.

Then it flashed to us, twelve years earlier, at a similar venue, sitting in the lobby during a Raffi show.

I wanted to run out of the theater and into the lobby to look for the family huddled in a quiet corner, trying to make it all okay.

I wanted to tell them not to worry, and that if they just gave it time, it would all work out.

I wondered, though, if when Bud was four years old, I would have been able to view him spending his sixteenth birthday at a Wiggles show as a mark of success. I'm afraid that, from that vantage point, I wouldn't have been able to recognize the tremendous growth and development that had led us to that day.

Last year, I read this post by Lydia, a young adult with autism, who introduced me to the concept of "growing sideways," along a unique developmental trajectory that might not always be clear to others. Her words resonated with me deeply.

Bud still loves all of the things that he loved in preschool. His passion now is the same as it was then. But now, he uses the things he loves in entirely different - and extraordinarily evolved - ways.

When he was a preschooler, Bud loved the Teletubbies and Mister Rogers and countless other preschool shows. Back then, he watched videos, and listened to music, and played with toys.

These days, Bud still loves the Teletubbies and Mister Rogers and countless other preschool shows. But now, he uses them as the paradigm through which he expands his horizons and hones his skills. Now, when Bud works with his treasured programs, he researches. He investigates. He catalogs. He transcribes. He narrates. He documents.

Bud is a master of Google and YouTube. He is expert at Word and PowerPoint. He is an extraordinary speller. He can pull out main points to create titles and captions. He uses punctuation appropriately. He types with incredible accuracy and speed. He can freeze frame and cut and paste and size images. He looks for patterns and themes and relationships. 

Bud uses the things he loves as jumping-off point. He researched the Teletubbies and learned about Ragdoll Productions, and the co-creators of the program, Anne Wood and Andy Davenport. He learned how the episodes were constructed. He learned about the actors involved with the programs. And then, he sought them out in other arenas - learning about their other projects, expanding the realm of his interest, and becoming a bit of an Anglophile in the process.

Bud's interest now is in what happens behind the scenes of his favorite programs. His heroes are the voice actors who give life to the animated characters he sees on the screen. He's practicing his own skills as a voice actor, and he does a great X the Owl and an even better Tigger. He can mimic dialects with the best of them.

Bud borrows DVDs from the library to create PowerPoints that catalog them in a variety of ways - the scenes, the actors, the artists, the composers. Right now, he's delving into the works of Julie Andrews and the Sherman Brothers - both sparked by his new-found love of Disney's Mary Poppins (the stage production of which we'll be seeing later this year).

Bud may be the only sixteen-year-old I've ever met who never utters the words, "I'm bored." There is always more he wants to investigate. More he wants to dissect. More he wants to compile.

But Bud's sideways growth has not only been in the areas of British children's programming and the voice actors in classic Disney movies. He is also expanding his social repertoire. Last Saturday, during a visit to the local library, he bonded with our librarian Bill over a conversation about Sterling Holloway, Bud's favorite voice actor, who provided the voice of Kaa in the Jungle Book, Mister Stork in Dumbo, the Cheshire Cat in Alice in Wonderland, and the beloved Winnie the Pooh. Bill told Bud about his son, who is currently enrolled in a degree program in animation and who hopes to work in the field.

And, of course, there is Bud's interaction with Lachy at the Wiggles show. In order to make that happen, Bud had to:
1. Set a goal, then
2. Read the hectic, multi-sensory environment to
3. Identify the exact "right" moment of opportunity, then
4. Communicate at the right moment using
5. The right words,
6. The right tone, and
7. The right body language.
He had to:
8. Initiate
9. Listen, and
10. Respond appropriately,
which meant he had to coordinate his
11. Speech and
12. Movement.
And then, he had to
13. End the interaction gracefully, and
14. Celebrate the achievement of his goal.

And he handled it like a pro.

That's the moment I want to capture and share with the family in the lobby who's wondering if it will ever be okay. Because I'm telling you: if you are inclined to think that Raffi at four to the Wiggles at sixteen does not represent progress, then you need to think again.

What Bud keeps teaching me, over and over, is that when he can use as a starting-point a context that is known and comfortable and familiar to him, it can propel him to life-changing growth. Sometimes his growth might be sideways, but inevitably, it ends up moving him - and moving us both - a long way forward.

Friday, September 11, 2015

Impact

Tonight at bedtime, Bud told me that in social studies today, he wrote about how he felt about the anniversary of September 11. I asked him if he knew what happened on September 11, and he answered with a portion of a script from Mister Rogers. Then he told me that is was a sad day and that people were scared and people were hurt.

I told him he was right.

I told him that he was very little on September 11. He wasn't even two years old.

I told him that when the sad things were happening on September 11, he and I were at Kindermusik. I told him that it was a class we took with other moms and kids.

"It was Kindermusik with a k," he said.

"That's right, it was," I said, a bit surprised.

"My teacher's name was Meredith," he said. "What was her last name?"

I told him.

"And we were at Mrs. H's church," he said.

"That's right," I said. "That's where the Kindermusik class was."

"We were singing and dancing," he said.

"Yes," I said. "We were."

Does Bud remember Kindermusik independent of September 11, or is the class etched into his mind because it is connected to that event for him, as it is for me? Though he was too young to understand what was happening that day, could he tell from the rest of us that it was a day we would remember forever? I have no idea.

All I know is that we all remember where we were that day.

Even Bud.