Lessons From Autism: #1

Prior to meeting my wife, Kerri, I had limited exposure to Autism.  Sure, there were students with Autism on the campus where I taught English at the time. I’d see the them in the hallway or stop by their classroom to say “hello,” but that’s about all I knew.

When Kerri and I began writing back and forth via an online dating website it was clear there was a connection between the two of us.  The writing went on longer than I experienced as typical [typical: I’ll return to this word often].  Anyhow. ..I began to wonder if things would ever progress to a phone call.

“She’s hiding something. . .I know it!” I thought.  Hmmm.

AS205So, I nudged. And still she held out on giving out her phone number.   “I get it,” I thought. She’s a single mom of two. . .doesn’t want to jump in to things.   But there was a connection!  Why the hesitation? Surely this is worth of a phone conversation. So, I twisted her arm in a virtual sense and, finally, the digits.

Several conversations later, Kerri took a significant personal risk and told me about her son with Autism. This, I later learned, went against the advice of her friends.  To my own surprise I didn’t flinch.  I wanted to hear about him. The connect only grew stronger and I could explain why. Little did I know I was standing a the two roads that diverged in a yellow wood.

After that conversation, I had multiple epiphanies.  This was a big deal for Kerri.  It’s kind of disclosure that results in a great deal of vulnerability.  And it’s the kind of information  would cause the recipient to bow out and move on. This is a real fear of many single parents with Autistic children…”Will the person I’ve grown to love leave?”

I’ll be honest.  If I had met Kerri a few years earlier I might have been that person to take my first exit.  But I was experiencing something I hadn’t in a long time.   My spiritual, emotional, and mental heath had simultaneously found a calm place.  The time was right for, not just any relationship, but one that would involve anything but the typical state of affairs.

I’ve learned a great deal about life in the past two years.  There have been, and will continue to be, frustrations that challenge every ounce of human patience.  Likewise, there are moments that reach the peak of joy.  And there is literally every emotion in between.  Autism, like other disabilities, brings perspective to life.  There is little energy to spend on matters that are  of little consequence (and those matters differ from person to person).

One of the many lessons I have learned thus far is to challenge people  who say, “I couldn’t do what you do.”  My response?  “Yes, you can, and someday you likely will.”  It might be caring for a child with a disability, a parent that develops Alzheimer’s, a sibling who suddenly needs lifelong care, or a spouse that one day needs you to feed them.

Sure, there will always be those who cut and run because they are too afraid to come out of their narcissism.  For the most of us, however, love and compassion will prevail.  And we will deepen our understanding what it means to be human.

 

 

I Caught You Looking: The joys of public scrutiny.

J can be loud in public. Any child can. I suppose a loud scream is expected more from a small child than an 8-year-old boy. But J has autism. That’s his (and my family’s) reality. He’s going to make noise at any moment and it can be piercing to the ear.

Today, as my wife took the boys out to the car while I paid for our items at Costco, J did his thing as he passed by the woman in front of me. She glanced at me and then I caught her full-on-turn-the-head-look at him as he walked out. I wanted to say, “He spared you his best effort.” But I moved on with my life.

This happens frequently. I don’t know what people think when they look. I don’t care.

I’ve never been bothered by children in public, save the rare climber behind me in a restaurant booth. And I have always tried to curb my judgment about their parents.

One of the young parents I follow on Facebook, a woman who used to be in a church youth group I served years ago, recently told a story about the sharp judgment she received from an onlooker when her child was in full on tantrum mode in public. This mom was simply trying to get her child to the car for safety and a place to calm down. To the onlooker, I say, your insertion into this mom’s life is unwarranted and unwanted. Thanks for being unhelpful. Move along.

Our society is plagued with people who seem to know what’s better for other people’s children, even if they themselves have children. But such arrogant superiority doesn’t stop at judging how others parent. Folks will look and judge and shake their heads over many other things: the fashion a woman chooses, watching two men walk down the street holding hands, loud children, the eye roll when a single mother takes out her WIC card to buy groceries, children in public, and so on. Oh, did I mention children in public?

I would think people have enough on their plate than to cast stones at those around them. Parents will do what they feel works best (an I’m not speaking of abuse- that’s a different conversation) for their children or what they simply know how to do. People will live their lives in the way suits them: sometimes it’s the only option they have at the moment.

So, if you must look, offer a smile or an expression of understanding. Otherwise, look away and go about your business.

Autism Stepdad Training: Mischief Makers

In my previous Autism Stepdad post I highlighted just a few of the many lessons I’ve learned about being in a family with an Autistic child. But there’s another child in this family, Jakob’s twin brother, Clay.

(Bias alert)

Clay is a very intelligent young boy. During one of our first meetings he asked me, since I’m a teacher, if I could get him a copy of the Periodic Table of the Elements. “That’s a unexpected but welcomed request,” I thought. So, I obliged. And who wouldn’t? Better to encourage those academic curiosities as early as possible.

His vocabulary is a little scary sometimes. In fact, Kerri and I have to be careful what we say around Clay because he deciphers some of our sarcasm and nuances all too easy.   And, just when we think he’s engrossed in one of the many board games he has created, he lets us know he’s heard every word we’ve said.

But one thing I love most is that he sometimes reminds me of how I behaved as a child.

He often prefers the company of adults.

So did I.

He really isn’t all that interested in playing team sports.

Neither did I (although I gave them a shot and prefer to be a spectator).

And, despite his smile and innocent face, he knows how to cause trouble.

So did I.

Just a few days ago he came to me and said, “Kyle, guess what I found.”   Before I could respond he revealed from behind his back two large air-packing pillows that came with our most recent Amazon order and exclaimed:

“MISCHIEF MAKERS!”

I knew then that an air pillow would be popped behind me, unexpectedly, in my near future.

He keeps it in check though, mischief that is . . .well for the most part. It’s part of the joy that is Clay.

At least has yet to go the length I did when I was about his age. I recall once being irritated by a girl that lived down the street. So, the moment I saw her riding toward me on her bicycle I got s ready . . .with a handful of tacks I found in the garage- the kind the required the use of a hammer. With my best effort I threw those tacks all over the street hoping to pop the tires of her bicycle. I thought it was hilarious. My mom thought otherwise. I spent the rest of my “outside time” picking up tacks from the middle of the street. And I’m sure my punishment included a swift hand to the butt.

I don’t want to paint Clay as a constant “mischief maker” because he’s not. He’s a child whose sibling does not play and wonder with him the way my siblings were capable of doing. Other parents of Autistic children know this reality all to well. But children adjust, sometimes with ease, other times with difficulty. Clay is no different. He could easily harbor resentment given some of Jakob’s needs. But he doesn’t and I admire him for it. He loves his brother.

I can’t predict future challenges. But one thing is certain: Clay takes cues from me as I learn to adapt. So, I’m mindful of the words I choose and the tone in which they are spoken. Patience is more that some virtue in this scenario . . .it’s a necessity.   If Clay can live with grace and patience in this family, so can I.

Autism Stepdad in Training

I’m ten months into learning how to be a stepfather to twin 8 year old boys- one of whom is diagnosed with Autism and apraxia. Together they bring bring all the joys and challenges that come with parenting any child.  But when special needs are in the mix there’s a completely different dynamic at play.

In short, my stepson with Autism and apraxia processes the senses differently than I do.  Further, he requires an assistive device to communicate, as he cannot form consonant or vowel sounds in the way most people do.  This requires an added dose of love and patience.  And I can tell you it’s a lot easier to offer than one might think. By the way, we often call him J Bird, in addition to his real name.

No doubt I will have plenty to write about over the years.  But here are just a few of the things I’ve learned in the past few months.

  • Affirmation of love and safety comes before any form of correction.
  • All that push back over the word “retard” is for a reason.  Outside a musical composition it’s never used in a positive manner.  I’ve dropped it from my vocabulary.
  • Bursts of anger or frustration are more about wanting to be understood than “there’s something wrong with that child.”
  • A child with Autism, particularly one with a twin brother, is just as protective of his sibling as any other would be- and he has his way of letting you no….”that’s my brother your scolding!”
  • “Naked as a J Bird” moments may happen at anytime.  We’re working on this one.
  • If J Bird is outside and it’s in his hand there’s a high probability it will end up in the pool.  I’ve seen it all: hot dogs, bicycle locks, rocks, bowls of pretzels, the popsicle he just asked me for, his cup of juice that’s now adding a nice color to the water, and, if you’re lucky, you’ll suddenly see his swimsuit at the bottom (see previous bullet point).
  • Moments of affection from  J Bird without prompting are golden.
  • I’ve learned to ignore the stares from others who just don’t understand.
  • Use handicap parking when necessary without apology.  The same holds true for the disability pass at Six Flags Over Texas.  A forthcoming post on this issue is in the works.
  • When J Bird invites you to join him on the trampoline you gladly accept. It’s one of his favorite things to do.

Like I said, I’m only 10 months into this.  I’ve learned to  expect. . .well, the unexpected.  There’s more to come for sure.  My hope in writing about this journey is to bring awareness, neutralize the judgments, and deepen the compassion toward a growing segment of the population that is . . .well, a unique piece of the puzzle that makes up all of us.  So, if you’re still reading I hope you’ll return for more.

Brent Woodall Foundation Walkabout for Autism 2014.
J Bird and me. Brent Wooodall Foundation’s Walkabout for Autism, 2014.