Saturday, April 14, 2018

Age: appropriate

Sometimes it feels like I log in here to write the same things over and over. Here I go again. And let me be clear: I post this with Bud's permission.

The other day, Bud told me that he was sad because someone told him that Blues Clues was for babies. Bud loves Blues Clues. He also loves being a young adult. He was trying to work out how both things could be true.

I assured Bud that the person who told him that Blues Clues was for babies was wrong, and that it was perfectly okay for him to tell them so. I explained that it is possible to be too young to watch something, but it is not possible to be too old to watch something. I told him that he is the only person who gets to decide what he loves, and that people need to respect his passions without judging them. I told him that it's great to find new things that he loves, but that never means that he needs to stop loving the old things that he loves.

For the love of God, people, stop shaming our kids for having "juvenile" interests. Respect who they are. The end. I have never once felt judged for incessantly posting my love missives to Mister Rogers on Facebook. No one has ever suggested that I should have moved on from the show I fell in love with when I was three. Why should people's reaction to Bud be any different?

Bud loves Blues Clues. It's a show about friendship, and kindness, and family, and problem solving, and creativity, and curiosity. Which of those things should Bud have outgrown?

If you're still not convinced, please read (or re-read) Lydia Wayman's essay "Growing Sideways."

Then sit down in your thinking chair and think.

Think.

Think.

Tuesday, April 10, 2018

Lessons learned

As I've said a hundred times already, I am reluctant to write about Bud's life now, as everything I write seems like an invasion of his privacy. So I apologize that I'm writing this with a complete lack of context, but it was either post without context or post not at all.

It's about education and, specifically, about school and, specifically, about special ed staff.

If you ever for a single moment feel as if you are working with "educators" who seem to be approaching your son or daughter as a series of behaviors in the shape of a child, RUN.

Run fast.

Run fast, and run as far as you can.

Run until you find an educator who sees your child as full, whole person, with talent and ability and challenges and complexity, just as any full, whole person has. Then link arms and hold on tight, because you're both going to be in for a hell of a fight.

Friday, March 16, 2018

So, why haven't you written that book?

It's a question I've been hearing for at least eight years: "So, why haven't you written that book?"

Back in 2010, when Bud was ten years old, I wrote a series of posts about a presentation I gave to his fourth grade class, trying to help them understand autism and trying to help them understand Bud. A Hairdryer Kid in a Toaster-Brained World and the series of posts that followed took on a life of their own, and I found my blog suddenly getting thousands of hits every day - and at some points, every hour. I got lots of feedback, attention, and email.

Early on, people encouraged me to turn the series into a book, and I was offered assistance from people who had the power to make it happen. I was overwhelmed, but flattered, so I agreed.

For about a year, I tried to make it happen. I shaped book proposals from different angles and for different audiences, but none of them felt right.

I tried writing A Hairdryer Kid in a Toaster Brained World: A Kids' Guide to Understanding Autism, and was well on my way when I was horrified to realize that I was directing the book to everybody EXCEPT kids with autism.

I scrapped it and started over.

I've been scrapping it and starting over for the past eight years.

It's only been recently - starting, maybe, sometime around November 8, 2016 - that I have figured out why.

I wouldn't want to read a book about what it feels like to be a woman that was written by a man.

I wouldn't want to read a book about what it feels like to be gay that was written by someone who is straight.

I wouldn't want to read a book about what it feels like to be black that was written by someone who is white.

I wouldn't want to read a book about what it feels like to be transgender that was written by someone who is cisgender.

So, I don't want to write a book about what it feels like to be autistic, because I am neurotypical.

There are many amazingly talented autistic writers out there who are eager to write about their lives, their experiences, and their truths. Because I'm neurotypical, I have more access than they do, which is precisely why I need to step aside.

The "Hairdryer Kid" series is out there on the blog - because, as we all know, any old yahoo with a computer and an internet connection can write a blog.

But the books on being autistic - the ones with real insight, real credibility, and real information that those of us raising autistic children need to read - they need to be written by autistic people.

Tuesday, February 27, 2018

If a blog post falls in the forest

Saturated.

That's the word that comes to mind: saturated.

There is just so much - so much to do, so much to consider, so much to discuss, so much to fight for, so much to fight against, so much to worry about, so much to plan, so much to act on, so damned much. I'm saturated. The sponge is filled to capacity. I've started to leak.

Blogging used to save me when I felt saturated. It let me slow down and let some of what was in my mind seep on to the page, where I could shape it, reframe it, and share it. Then my friends picked it up, flipped it over, and helped me see it from a different angle. And in the process, I found that some space had cleared. Some portions of the sponge had been gently and carefully wrung, and I found myself able to do, consider, discuss, and all the rest, much more effectively.

But blogging has changed as social media has become more pervasive. In the old days, we made the rounds of our favorite blogs, stopping in on our friends' virtual front porches and leaving a supportive comment or a much needed laugh. These days, we flash a thumbs up as we fly by each other on Facebook. We read thumbnails instead of pieces, and we use the extra time to wage battle with the Russian bots. My friends only know if I've posted on the blog if Facebook tells them that I have. And, increasingly, Facebook will only tell them that I have if I'm willing to shoot them some money for the effort.

Even when people do find me through Facebook, the comment section - the slow and easy conversation we used to have here on the blog itself - has all but disappeared. The comments appear on Facebook, or, more often, somebody shares a post on their own page, and the comments unfold there, where I can't see them, can't engage with them, can't learn from them. And so, the Facebook numbers game - the shares, the likes, the "seen by" totals - they become the end game, and they add to the saturation. Instead of easing the frenzy, they feed it.

The lightning pace with which things are now shared and argued and refuted and celebrated and re-posted - it's exhausting. It has made me so fearful of shining the spotlight in the wrong place - of sharing too much of Bud's life, or of sharing the wrong things, in a way that they will take on a life of their own and the damage will be done before I've had a chance to reign it in, unpublish, and reconsider. The ubiquitous nature of social media has taken the joy out of blogging for me, and has replaced it with a passel of anxiety.

But I'm saturated. I need to get it out - to slow down and shape and think and reframe and share. So I'm going to do it, and I'm not going to tell anybody on Facebook about it. I'm just going to set up here on my porch with some iced coffee and freshly baked cookies, and if you happen to wander by, I hope you'll stop in.

Perhaps I'll find that without the boost of social media, I'm alone here in the forest - a tree that falls without anyone there to hear it. And then, I'll have some different decisions to make.

But right now, I'm feeling just a little less saturated than I was when I began writing this post, and that, at least, is a start.

Monday, December 18, 2017

Seven words

On Friday, the Washington Post reported that the Trump administration was prohibiting the Centers for Disease Control and Prevention from using seven words in official documents being prepared for next year's budget. The words are:
- Vulnerable
- Entitlement
- Diversity
- Transgender
- Fetus
- Evidence-based
- Science-based

To say that I was stunned is an understatement.

My mind leapt immediately to George Orwell's dystopian novel Nineteen Eighty-Four, in which a totalitarian political regime persecutes citizens for "thoughtcrimes" - independent thinking that runs counter to the party line. The regime demands the use of Newspeak - a restrictive language designed to limit freedom of thought.

Orwell writes,"Don't you see that the whole aim of Newspeak is to narrow the range of thought? In the end we shall make thoughtcrime literally impossible, because there will be no words in which to express it."

The idea, and its reflection in the practices of the current administration, are chilling.

Words matter. We use words to give shape to our narratives - to tell our own unique stories. Our stories are the things that build connections, bolster understanding, inspire compassion, and drive action. Without them, we are alone, left behind, and marginalized.

I think, specifically, of Trump's seven forbidden words and the role they play in the narrative of my son's life.

Bud is multiply disabled. Most of his disabilities developed while he was a FETUS. There remains a pervasive and misguided belief in society that his autism was the result of vaccines, despite the fact that not a single SCIENCE-BASED study has identified a link between the two things. Bud's autism is hard-wired and is a significant part of him. As an autistic person, he brings a unique perspective to the world and adds important DIVERSITY of thought to our society.

We are lucky to have had access to exceptional health care and educational opportunities throughout Bud's life. Bud has participated in strong EVIDENCE-BASED practices and interventions that have helped him thrive. Despite that, as an eighteen-year-old young man, Bud is not currently on a path that is likely to lead to full-time employment or the opportunity to live independently. It is likely that he will depend on so-called "ENTITLEMENT programs" like Medicaid and Social Security throughout his life - the very programs, in fact, that are poised to be gutted by the current administration. This makes Bud dangerously VULNERABLE.

In fact, it makes Bud join the ranks of millions of others who are VULNERABLE under the current administration - the elderly; people of color; gay, lesbian, bisexual, and TRANSGENDER people; Muslims; immigrants; Dreamers; people living in poverty. There are millions - millions - who are suddenly, terrifyingly VULNERABLE.

Trump's seven censored words are woven inextricably into the narrative of my son's life. Without them, he cannot tell his story. If he and the government agencies responsible for supporting him cannot tell his story, they will be unable to build connections, unable to bolster understanding, unable to inspire compassion, and unable to drive action.

And that, I fear, is exactly the point.

Saturday, August 26, 2017

The right dog

My last post was a bit of a political rant, and I promised that my next post would not be. I promised that it would be about the best thing that happened to our family in 2016.

In the original post, I said something like "Tomorrow I will tell you about the best thing that happened to us in 2016," and when I wrote it, I fully expected that I would log in the following day and tell you the story.

That was seven months ago.

It's been that kind of year.

But, today is National Dog Day, which makes it feel like the right time to tell you about the best thing  that happened to us in 2016.

Meet Roscoe.


I know, right?

But in order to fully appreciate how good this is, let me take you back in time. Let me take you back to 2005, when Bud was five years old and terrified of dogs. His fear was overwhelming and it affected our daily lives. There were routes we couldn't take when we went for a walk, friends' homes we couldn't visit, and landmines around every corner - like a barking dog in the car next to us when we pulled into a parking lot, or dogs off-leash who greeted us on hikes as I shouted "We have a phobia here" and well-intentioned owners yelled back, "It's okay! He's friendly!," before realizing that despite their pets' friendliness, it was definitely not okay.

Flash forward twelve years, and we are in a very different place.

It was a slow progression. It started with therapy dogs at school, who through brief, frequent contact in safe environments, earned Bud's trust and became loyal allies. Over time, with his confidence bolstered, Bud was able to reach out slowly and expand his circle of canine friends, until even dogs he didn't know felt safe to approach.

Sometime around 2012, I was surprised to find myself thinking that maybe someday we could have a dog of our own. Other people jumped on the idea whenever I said it out loud, and sent me leads from vets they knew, links to ads that showed sweet puppy faces, and articles about dogs trained to work with autistic people. But my reaction was the same every time: "I just think the right dog will find us."

I had no idea how I thought it would happen - if I thought a puppy was going to fall out of the sky or something - and people often reminded me that I might actually need to try to meet some dogs in order for the right one to find us. I knew they were right, but I also knew in my heart that it would happen. Someday. When the right dog was out there.

In honesty, I always kept one eye open and I surfed the Pet Finder pages a lot. But it wasn't until after Brian and I were married that we thought maybe the time was right, and we started looking together. We thought we found the right dog once, and we brought him home for a weekend, but he made it clear almost from the start that we were not the right family for him. (He has since been adopted by his right family, so that story has a happy ending, too.)

Our weekend with the not-right dog made us realize that, though we believe strongly in adopting dogs, our complicated family dynamics would probably work best for a dog who didn't come to us with baggage - one who knew no other family but us; one who grew up with Bud and my six-year-old stepson Buster. Because there was the Bud factor - the bouts of anxiety, the episodes of dysregulation, the need we knew he would have to stroke a dog's ears and give full-body hugs - but there was also the Buster factor.

To say that Buster is high-energy is an understatement. Buster is all sound and movement, usually unpredictably so, with bursts that come out of nowhere. Bud, as you might imagine, does not always react well. We wondered about how a dog would respond to that dynamic.

We also thought a lot about the fact that Buster is not with us full-time. We didn't want our dog to be Bud's dog, and we wanted to make sure that Buster never felt like an outsider.

I knew, more than ever, that only the right dog would do.

We started contacting breeders of Golden Retrievers in our area to put out feelers and get our names on wait lists with people who had upcoming litters. After a few months, we got the email we'd been waiting for. A litter had been born and one of them was ours.

When the puppies were old enough, Brian and I went to the breeder's home to meet them. We sat in her yard with seven adorable puppies and tried to figure out which one was ours. Because we know ourselves, we'd brought a copy of "Puppies for Dummies," so we had a list of things to do with each of the puppies in order to learn more about their temperaments.

They were all adorable, but there were a few who stood out to us. There was the little guy who seemed to be the leader of his pack, climbing over his siblings, provoking them into playing with him, running and rolling, and never, ever stopping. We knew that if Buster had been with us, that was the dog he would have wanted.

There was another little guy who climbed into my lap while I was socializing with his siblings, then curled up and fell asleep. He was mellow, and sweet, and submissive. We knew that if Bud had been with us, that was the dog he would have wanted.

But we were committed to meeting all of the dogs, and running them all through our "Puppies for Dummies" activities. The book told us to pick up each dog and cradle it like a baby to see how it reacted. I cradled every one of the seven puppies. Some of them squirmed away. Some of them laid in my arms passively. Some of them engaged with me. Then there was this guy:


I picked him up and cradled him like a baby. He looked up at me and kissed me on the nose. The more I interacted with him, the more he kissed me.

I put him down and continued to cradle his siblings. He wandered around as I did my thing, but he stayed close. When I'd met all of his siblings, I scooped him up again. I cradled him like a baby and looked him in the face. He leaned forward and kissed my nose.

I said, "I think this is the one."

A man who'd been watching us as he tried to choose a puppy of his own said with a chuckle, "Ya think?"

And that was that.

We named him Roscoe and a few weeks later, we brought him home. That was just over a year ago, and it's hard to remember life without him. He is true to his breed - friendly and loving, easygoing and loyal. But, I'm telling you, this dog - THIS DOG. This dog is really something special.

We are continually amazed at how differently Roscoe interacts with each of the four of us. He doesn't play favorites, but he understands how we are different, and he knows that we each need different things from him.

Roscoe sees Brian as his BFF. Brian is the guy who'll go on road trips to the dump and let him sit in the front seat. He's the one who'll throw infinite numbers of balls to be fetched and returned. Roscoe and Brian seem to be practicing to become frisbee champions of the world - and I have to admit, they are really good.


When Brian returns from a business trip, Roscoe gives him a hero's welcome, and greets him with a low, growly noise he reserves for just that occasion. We think it means some combination of "where the heck have you been?" and "thank goodness you've come back!"

Roscoe has a very different relationship with me, and seems to see me simultaneously as the care-giver and the cared-for. When Roscoe isn't feeling well, he comes to me, pawing at my legs and looking at me with a plaintive expression that says "fix it," resting his chin on my leg and cuddling in close for comfort. At the same time, he has cast himself as my protector. One evening, while the rest of the family was upstairs in the living room, I snuck down to the TV in the basement to catch up on a recent episode of This Is Us. In that particular episode, the mom character, played by Mandy Moore, was sobbing hysterically and trying to talk through her tears. Roscoe, a flight away, heard a female voice in distress and tore down the stairs, leapt across the room and on to my lap, and kissed my face until I could hardly breathe.

He was also very concerned when I twisted my ankle and fell. He laid next to me on the ground until I was able to get up again, and then he sat and diligently held my ice pack in place.


I swear, if he'd had thumbs, he would have made me chicken soup.

As it turns out, we need not have worried that Buster would feel left out of the Roscoe dynamic. Roscoe seems to view Buster as a fellow puppy, and celebrates like it's Christmas every time Buster walks through the door. They run each other ragged, and it's hard to know which of them is having more fun.




And then, there's Bud. It was the Bud-Roscoe dynamic we were most worried about. Bud is not a fan of change, and we knew that adding Roscoe to our family would be a huge and possibly overwhelming change.

We were right to have been concerned. Bud liked Roscoe from the start, but he was not sure he wanted him there full-time. There were requests that we take him back, suggestions that we find him a new family, and threats of calls to Animal Control. But there were also silky ears, and friendly kisses, and warm puppy-breath-laden cuddles.

Ultimately, the cuddles won and you couldn't go long in our house without seeing this:


Roscoe is different with Bud - gentler, and more patient - than he is with the rest of us. He is profoundly concerned when Bud is upset. This summer, they discovered their shared disdain of thunder, and when a storm starts shaking the house, the Thunder Buddies huddle up and ride it out together.

A couple of nights ago, a thunderstorm started after Bud had gone to bed. Roscoe went to the gate that blocked him from going upstairs where Bud was sleeping, and started pacing. He came to me with purpose, and pawed at my legs insistently. His meaning was clear: "Bud needs me." Brian and I sat with Roscoe on the couch and tried to calm him down, but the more time passed, the more it became clear that he was not worried about the thunder; he was worried about leaving Bud alone to deal with it.

Before long, the thunder woke Bud and he joined us downstairs. Roscoe jumped onto his lap and kissed him, kissed him, kissed him, then sat still next to him as the storm raged outside. Bud stroked Roscoe's ears, hugged him tightly, and reminded us repeatedly "I don't like thunder," while Roscoe just sat - steady and calm. When the lateness of the hour caught up with him, Bud rested his  head on Roscoe's side, and Roscoe snuggled down, happy to provide a pillow for Bud's head.


This dog is worth his weight in gold.

So, that's our boy Roscoe, the best thing to happen to us in 2016, the best reason to celebrate on National Dog Day, and - without question - the right dog, who finally found us.

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.