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.

 

 

Guns, Mental Illness, and “Autistic Shooters”

Screenshot of a now deleted Facebook page intended to scapegoat people with Autism for America's gun problem.
Screenshot of a now deleted Facebook page intended to scapegoat people with Autism for America’s gun problem.
In the wake of the mass shooting at Umpqua Community College in Roseburg, Oregon, a  Facebook page was created with the title, “Families Against Autistic Shooters.”   Scapegoating people with autism for America’s gun problem is as irresponsible as blaming people with mental illness.

We can have a conversation about autism.  We can also have a conversation about mental illness.  But if we are going to have a  conversation about gun violence in American life, then we need to talk about guns.

Gun advocates like to point to anything but the problem, whether it’s misplaced blame or irrelevant statistics.  Automobile deaths are a favorite among the most vehement opponents to sensible gun legislation. But that stat is no longer at their disposal, as deaths from gun violence  (deaths- not including casualties) are poised to surpass auto mobile deaths in the U.S.  Downplaying the frquency of mass shootings is another. But there have been 994 mass shootings– 4 or more fatalities and/or casualties in 1 incident- over the last 1,004 days in the United States.  In 2011, the most recent year compiled by the CDC, there were 32,351 firearm related deaths.  It isn’t just homicides recorded by the FBI that must factor into this conversation.  We must include ALL firearm incidents that result in fatalities AND casualties.

This problem isn’t a parenting issue, or an autistic issue, or a mental health issue, or a blacks-in-Chicago-issue: this is a gun problem. The only pathology I see is the defend-the-second-amendment-at-all-cost mentality, even it means a rising body count of innocent people. The 2nd Amendment won’t be repealed.  But it needs a serious reinterpretation for the 21st century.  This isn’t 1778.  We’re not carrying around musket rifles anymore and we have a standing army (modern day militias are usually driven by hate and fear mongering). There’s no such thing as a zombie apocalypse and nobody is coming for our weapons.  The latter would be  a terrible decision anyway, as it would be a fantasy come true for gun fanatics itching to use their weapons  against the government.

It’s time we start finding solutions born out of reason and concern for the safety of the public and not driven by scapegoating, fear, paranoia, or profits from gun sales.

*Part of this post was paraphrased from the linked articles and reports found in The Atlantic, The Guardian, and form the CDC.

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.