This new site will, among other things, give me complete control and ownership of my content. I'm thrilled to share my new online home with you and grateful (beyond what I can properly express!) for your reading over the years, as well as the warm welcome you gave me upon my recent return.
It's hard for me to wrap my brain around the transformation this blog has seen since my first post in 2007. Henry wasn't even born yet. What on earth did I write about before? (Answer: Lots of food, lots of nonsense, and lots about my beloved first nephew.)
I hope you'll click over and join me in my new space. It's not complete, but complete enough. I can't wait any longer!
I cannot speak for Henry. I can't tell you exactly how autism affects him, because I'm not him. I can't tell you how Henry feels when he is having an intense episode of anxiety. Only he could do that. What I can tell you is what I observe, which is a courageous boy overcoming obstacles on a daily, sometimes hourly, basis.
The autistic brain processes everything differently than the typical brain. Sights, sounds, smells, touch, texture, words, feelings, thoughts. Everything. Imagine waking up every morning to a world that you see in extreme detail. You don't miss what everyone else misses. They see the forest, and you don't just see the trees; you see every leaf. Your unique gift is that you see everything, feel everything.
Additionally, maybe your clothes bother you. Maybe the temperature hurts you. Maybe the flourescent lights in your school or workplace give you an incessant headache. Maybe smells cause you to vomit. Sometimes you can't focus on your work because the world is wreaking havoc on your brain and body. These are just some of the ways autism affects people; there are others, and certainly these effects range in severity.
You wouldn't know it to watch Henry in his classroom or playing at recess or riding bikes and scooters with the neighborhood pals. You would know it when, suddenly, he is affected by something you never saw. Sometimes Keith and I see it coming, sometimes his teacher sees it coming, because we are really clued into his triggers. Still other times, only Henry knows the meltdown is on the way.
What I know is that he has learned to self-regulate (probably without even realizing it), but there was a time that his body needed so much proprioceptive input, he couldn't sit still when we read bedtime stories. He often bounced up and down, writhed around, and climbed on my head. This didn't mean he wasn't listening; it means he was helping himself listen. If I skipped a line in a familiar story, he immediately corrected me. If I stopped reading, he urged me forward. He was absolutely listening.
What I know is that new or not-routine situations can sometimes, but not always, cause him anxiety. Being rushed by classmates' hugs at the classroom door is overwhelming and embarrassing, so being late to school for a dentist appointment is simply not an option. Performing in front of a group of parents is his nightmare, but this year he has managed it like a champ - not loving it, but doing it anyway without disaster.
What I know is that I need to listen when he gives us a firm "no." Even at the young age of 5, he was more self-aware than most adults. People must think we are a little nuts when we comply, but we've had enough missteps by now to know when he says no to a suggestion, there is a legitimate reason.
I still cringe when I think of a time when, flustered, embarrassed, and anxious for reasons having nothing to do with him, I tried to force him to do something he didn't want to do. And I instigated a meltdown. And then I punished him for melting down, because I thought it was just a tantrum. It wasn't. He was scared. I would jump in a time machine right now if I could; it's one of my lowest parenting moments.
At least I can say I am learning. Recently we attended a breathtaking children's performance of The Lion King. Afterward we wanted a picture with our friend Neel Patrick, who portrayed Scar brilliantly. Henry said no to the picture. Once upon a time I would have done a lot more coaxing, but not now. I get it.
These precious people with the magnificent brains are more brave and more tenacious than we'll ever know. Being the mom of one has pushed me to step outside my comfort zone in ways I never expected. His life is not about me, not in the least, but I'm nonetheless thankful for the role Henry has played in making me a stronger person.
Every once in awhile, we need to do things out of character. We need to test our boundaries and massage our limits. Sometimes we need to do something our regular self deems crazy, just to feel the thrill. Sometimes we need a laugh. Sometimes we need to feel alive, to see what we're made of, to discover which boundaries matter and which ones don't. So, we sky dive, we start a new business, we travel to a third-world country. We do things we normally wouldn't.
Other times, we do things out of character because someones else deserves it. I write here about motherhood and faith, special needs and advocacy. I write about both the indescribable joy and undeniable challenge of raising a young man. Making people aware of testicular cancer, then, is a bit of a stretch. I did so anyway, because someone asked me in the right way. Someone touched me with his sincerity. Because authenticity and kindness matter to me, I stepped out of my writing comfort zone.
Still other times, we stretch ourselves because we must. A mom I know, a mom who passes out over needles, donated her plasma repeatedly because her daughter with cancer needed it. (I supposed this goes in the "deserves it" category too.) Thirteen years ago, MTV featured a man from my hometown who learned to walk with his arms; he had to, because the lower half of his spine never formed, and his and legs, useless to him, were amputated when he was 2 years old.
I have a hunch that people with special needs, including autistic people, step out of their comfort zone every day. I know Henry does, in some form or fashion, and when I stop to consider that, I'm in awe of his endurance, tenacity, and bravery. I'll be sharing about that later, but today I simply want to ask:
When is the last time you did something unexpected? Is your life prompting you to do that right now? To break your routine? Start a new habit? Be a little reckless?
Did you know testicular cancer is most common in men ages 18-35?
Did you know it is 99% survivable with early detection?
I didn't. I had no idea Keith was just barely out of the age range for highest risk. I didn't know early detection almost guaranteed survival. Truth be told, I knew nothing about testicular cancer except that Scott Hamilton survived it, as well as a brain tumor.
I'm not the sharpest knife in the drawer, but I'm not the dullest either. I figure if I wasn't aware, a lot of folks aren't. And we should change that. Why should pink get all the love? I urge you, ladies, to encourage the men in your life to perform self exams and have regular physicals. If they're not big fans of doctor appointments, tell them how much they mean to you, how much you want them in your life, and how silly it would be to lose them over a cancer that can be survived.
There's something else I want to say today. Kindness matters.
Last fall I was contacted by a fellow named Steve at Tommy John, a men's underwear company. I read and re-read his request. It wasn't a form letter. It mentioned my blog, my voice, and my family specifically. I passed the computer to Keith. "How did he get my name? My writing isn't that far-reaching. Do you know him? Is this affiliated with the Tommy John from Furman?" As best we could tell, the answer was no to both questions.
I answered Steve with a hearty yes, I'll be involved! Men are as important as women, and they get far less air time and sound bytes for their unique brands of cancer. Then Steve told me what he hoped I would do to participate in the campaign, and that's when I changed my mind. I didn't care for the tone of the campaign, the hashtag, or the graphics.
Part of my return email read, "A serious medical issue shouldn't be treated with the same crassness as a Judd Apatow movie. I know this is the country we live in; Americans seem to be most attracted to advertising campaigns that insult our intelligence with crude comedic appeals. I know this, but I don't have to like it."
I didn't want to be seen as a prude, but I was willing to take the risk for my convictions. I suspected Steve to read it, roll his eyes, and keep on moving. My humor is less Animal House and more Napoleon Dynamite, so I'm pretty used to being dismissed as a weirdo.
He surprised me. I received a moving response that said he understood my feelings and explained they were using humor, "at the risk of being crude," to target a young audience that typically isn't comfortable talking about serious matters. I empathized, and told him so, but what impressed me most was his thoughtful reply. He didn't try to convince me. He didn't send back a curt response. He didn't ignore me. He responded. With kindness.
When Steve contacted me again this spring, he assured me their tone had changed and wanted to offer me another opportunity. Not only was I impressed that he remembered our exchange, but I found he was right; the graphics and slogans had changed.
Because of Steve's courtesy and thoughtfulness, traits we value highly at the Dangel house, I'm honored to help Tommy John and the Testicular Cancer Foundation raise awareness for testicular cancer. Tommy John is now a company that has my utmost respect... and, pretty soon, a place in my husband's underwear drawer.
"Make of my book what you will, but keep in mind that I – and every other autistic person you are likely to meet – has the same ability as you to feel things. In fact, as you will read, our emotions often run deeper and longer than those of non autistics. So please be mindful of what you say. Words do hurt." -John Robison on his blog
Lent brought forth all kinds of questions.
"Mom, what are graves?"
"Graves are where our bodies go when we die, but our souls go to heaven with Jesus and get a brand new body."
Lip trembling. "Will I be a kid?"
Softly, I answer, "If you went to heaven now, yes, I think you would probably be a kid. But when adults die, I think they are adults in heaven."
He turns his face away from me, tears forming in the corners of his eyes. I scoot closer to him in the bed, put my arm around him.
The thing every woman hates happened to me one Sunday morning.
I slipped on slacks for church and discovered they wouldn't button. What? These pants I just bought a few months ago? Wow, I really enjoyed the holidays.
What could I do? Give up carbs? Nope. Give up sweets? Nope. The next morning I went for a long walk in our hilly neighborhood. And again the next morning. And the next. That was about two months ago, and now I get grumpy if I can't walk. (Also? I can button my pants.)
Keith enjoys walking with me too. After a few mornings in a row of walking together, I came home one day feeling agitated. The same thing happened the next morning. Agitated. Irritated. Twitchy.
The next morning after that, I walked alone. The sun warmed my face, my favorite white tree waved at me, the podcast uplifted me... Oh, I thought.My heart sank. I was grumpy because I wasn't alone.
I had to sit with that for a bit. Enjoying a long walk-and-talk has been a staple in our relationship since the days of long-distance dating. We meandered the walking trails around his apartment on Sundays, trying to forget we would soon say good-bye.
What was up with me now?
The reality is, we were having some serious discussions on our walks. Talks about Henry's future, our will, special needs trusts, attorneys... all the stuff no one wants to think about, but especially not special needs parents. We were being efficient, making use of the time alone. But I have begun to crave the opposite on my morning walks. I need inefficient. I need the opposite of facts. I need the sun on my face and the wind in my hair. I need openness, space to listen to God, space to listen to my soul.
When I create space for my soul to open, I also open myself up to the anticipation of possibilities, an attitude of gratitude, a posture of grace. My day is actually better. It's not magic, but it surely feels like it.
As for Keith, we still walk together sometimes, but heavy discussions don't come along, and he makes sure I have plenty of solitude as well.
My new habit was born of one necessity - ohmygosh, my pants don't fit. It remains a habit for completely different necessities. Soul necessities. The white space is critical for a pensive introvert like me, but I imagine it is more important for everyone than most people realize.
Maybe you practice excellent self-care. Maybe you protect your alone time like a mama bear over her cubs. Or maybe you don't know the last time you heard your own thoughts. Maybe, like me, you have your ups and downs, shifting somewhere between the two. My wish for you, if you need more white space for your soul, is the blessing of an irritation to help you find it.
To be nobody but
yourself in a world
which is doing its best day and night to make you like
everybody else means to fight the hardest battle
which any human being can fight and never stop fighting.
A variety of reading and events have compelled me to rethink my attitude toward Henry. Toward my parenting of him. Toward therapy. Toward organizations. Toward metaphors.
What good is therapy if we're only making our children fit into boxes we created from our own expectations?
If someone compliments "how far he has come," what are they really saying? Are we actually helping autistic people become more fully who they are, or are we asking them to be more fully like us?
Jess Wilson posted the above poem on her blog. And she asked this:
"What is it doing to the kid who has come so far in learning to disguise who he is - to hide in plain sight, to stuff and squelch and refrain and restrain and be enough like 'us' to no longer feel worthy of a life lived as herself?"
Her question struck me so deeply, so profoundly. Lest it be confusing, let me say I don't think she's condoning behavior that is hurtful or spiteful. For example, I think it's important to teach Henry not to hit people just because he's anxious. But I do think she's saying (and this is echoed by autistic adults) that we do damage when we tell kids (even restrain kids - don't get me started) they can't stim or can't fixate or fill in the blank; in other words, it's immoral to strip away what makes them them.
Right now I'm reading an anthology of essays written by autistics and published by The Autistic Self Advocacy Network. It's called Loud Hands: Autistic People, Speaking. Don't you love that title?
The theme I see most clearly running through this anthology is this: We are not broken.
The many essays written here point to a truth that most of us - neurotypicals, that is - can't wrap our heads around, though we can certainly try. The truth is that many (all?) autistic adults don't wish to be neurotypical. They like their way of seeing the world. They like the way they communicate. And they don't like the fact that the rest of the world usually puts the burden on them to adapt to typical communication, when the world could do more to understand and adapt to neurodiversity.
This doesn't mean they don't want to understand us; it means they want us to also understand them. Read that again. It's important.
One of the contributing authors to Loud Hands, Ari Ne'eman, writes,
"It is without a doubt true that autistic people across the lifespan face much more difficulty in many spheres of life. Yet, at the same time, the autism spectrum is inclusive of more than a series of impairments; many of the traits we possess can be, in the proper contexts, strengths or at least neutral attributes. For many of us, the prospect of cure and normalization denies essential aspects of our identity. The autism spectrum is defined as 'pervasive' for a reason; while it does not represent the totality of what makes us who we are, it is indeed a significant part of us, and to pursue normalization instead of quality of life forces us into a struggle against ourselves" (91).
Autistic adults, via various modes of communication, are pleading: Don't speak for us.
They are not broken. They are not incapable. They are not sick. They are not a fate worse than death. They are not behind an impenetrable wall. They are not trapped inside a locked box.
I'm pondering. I already ceased my support of Autism Speaks, but what more can I do? How can I help Henry become more fully Henry? How much does he really need to do and to learn to be successful and happy in this world, and how much does the rest of the world need to do to accept him?
I'm learning that looking in the eye may be a social construct for neurotypicals, but it doesn't have to be.
Communication is often verbal, but not always.
Repetitive behaviors may not be typical behavior for us, but it is for them.
This new thought process is the epitome of splitting hairs. It causes us to consider what is good, functional behavior and what is inhibitive, even unhealthy behavior. These aren't easy questions to answer, but they must be asked, because hundreds of thousands of people are worth the effort.
Ask me how I know.
This post is written in honor of World Autism Awareness and Acceptance Day. Photos taken at Camp Royall, currently the only camp in North Carolina run by the Autism Society of NC. Three more camps are in the works!
People say you can tell a lot about your priorities by looking at your checkbook.
I think you can also take a look at your bookshelf.
I find, when I look back over my latests reads, a theme usually emerges.
In the last few years I read Wonderstruck.24/6. Grace for the GoodGirl and A Million Little Ways. Bread and Wine and Bittersweet. Unglued and The Best Yes. And these are just several I chose for myself. Still others, chosen by groups, somehow always fit into the theme as well.
Healing. Deep, restorative, painful healing.
Despite my lifelong love affair with novels, they have been few and far between. My outward reasons? "I'm just so busy with grading." "I read so much about autism now." The real truth, had I dared to whisper it? I'm trying to fix me.
To be fair, I didn't know the real reason until now, but that's it. I was trying desperately to fix my mess.
If you've ever watched someone recover from an injury or operation, you've seen the agony. Tears and grimaces through the rehabilitative therapy. Incessant itching due to pain-relieving drugs. Swollen body parts because of steroids. Sometimes these are just the tip of the iceberg - sometimes the healing goes much deeper.
I saw my injuries, recognized them, treated them. What I didn't realize was that the healing would take some time, so while I thought I was fine - thought I was recovered - the wounds were still tender. Scabs itched. Muscles throbbed. Bones ached.
My bookshelf reflected that, though I couldn't see it.
If you're a reader, what about your bookshelf? What does it tell you about your priorities or the state of your soul? It could be the barometer you're looking for.
The year or two before that were crazytown. Crazy. Town.
If you don't believe me, scroll down and see what I did right before I quit blogging. I went on a 24-hour solo vacation.
I didn't entirely understand why I needed to stop writing here, but I knew that I did. I had no desire, no creativity, no inspiration. It didn't make sense, not after all the time and energy I'd poured into this blog, but there it was: I was done.
What I now know is, even though I had learned an incredible lesson in taking care of myself when I took that sabbatical (i.e. take care of yourself and then you can take care of others), I still had a long way to go toward healing.
So, what has that healing looked like?
Well, in some ways, not much different than before. I'm still cooking, cleaning, washing clothes. I do work, school, and church. More significantly, Keith and I kept up our tradition of taking a couple weekends for ourselves each year. We also celebrated our 10th wedding anniversary by (finally) taking a longer vacation. Ahhhh.
In other ways, very different. Spiritually, I've taken steps forward and backward, learning along the way to say no, even to good and worthy pursuits, in order to give my best yes to the most important things to me and to the things that only I can do. I've learned to say yes to help and yes to rest. I've continued learning at the feet of my assistant pastor in Women's Bible Study, and I've learned to listen to my life in the safe, encouraging circle of new friends. My latest lesson, and my theme for 2016, is simply to listen.
What about Henry?
In his world, so much has happened I can hardly remember it all. He had a wonderful, maybe even transforming, year in the 5s class at University Presbyterian Preschool - a transitional kindergarten for young 5s - and then began public kindergarten last fall, where he is thriving and learning and exceeding all my expectations. His teacher really sees him, and I could kiss her cheeks every day! He 'graduated' from both speech therapy and occupational therapy, occasions I still can't type or talk about without getting emotional. We took him on his first Amtrak ride, which he proclaimed "the best day ever," and in a few weeks he'll ride the metro for the first time in Washington, DC.
So, while I haven't been writing, my life has definitely been full. It wasn't until recently that I began to miss writing, as if that part of me went to sleep for awhile and is waking up again. For the longest time I didn't have anything to say - not publicly, and now I'm starting to see that it was my time to be quiet, to be filled. I was poured out, emptied. Done. Maybe more than my writing is waking up.
When Henry was born, and even more so when we received his diagnosis, God began slowly stripping away everything I thought I knew about myself to show me something better. I'd like to start living into that. Really living into that.
I'm a blessed wife to Keith and mommy to Henry, who is autistic, smart, tender and hilarious with an infectious smile. I write here about my joys and struggles as a special needs mom, but really? Henry opens my eyes to new ways to stay delighted in the Lord.