Monday, September 30, 2013

What Autism Has Taught Me

It has been sixteen months since Owen got his autism diagnosis.  Sixteen months of therapy, IEP meetings, and re-learning everything we thought we knew about parenting.  Sixteen months of medications, trampolines, and pressure vests to soothe his symptoms.  Sixteen months of climbing to top of the victor’s podium when we defeat a challenge.  Sixteen months of crawling to our feet when autism knocks us to the ground.

What a wild, crazy, joyous, frustrating, hilarious, anger-inducing, celebratory, disheartening ride it has been.  The journey has been confusing and, to be honest, a little bit scary.  Kinda like autism itself.

I have learned a lot of things over the last sixteen months.

Some days, autism wins.  Period.
In dealing with Owen on a day-to-day basis, we’ve sort of taken Mad Eye Moody’s mantra as our own: “Constant vigilance!” (That’s a Harry Potter reference, for the less nerdy among us.)  We address autism from all sides, always looking for new ways to engage him, and we’ve learned a lot about how to handle the majority of Owen’s issues.  We know what environments he just can’t handle (a roller skating rink being at the VERY TOP of that list…we learned that one the hard way).  We know that fifteen minutes on a swing or the aforementioned trampoline will give enough sensory input to his vestibular system to allow his mood to do a complete 180.  Most of the time, we can avoid the triggers and situations that are sure to spark a meltdown.  Some days, however, autism wins.  No amount of therapeutic assistance, soothing tools, or comforting words will suffice.  The world is just too much that day.  And we’re OK with that.  Even the neurotypical among us have “off” days. The key is to be more stubborn than autism is, and come back the next day, determined to make it better than the last.  I won’t lie and pretend that’s easy.  It’s not.  You do it anyway.

Reactions to autism are as numerous as people themselves.
“Autism is just what bad parents use to excuse their child’s behavior.” “He just needs a good spanking.” “I feel so sorry for you.” “He can’t be autistic; he’s too smart.” “I just love Owen.  He’s so awesome.”  I’ve heard all five of those things with my own two ears.  Guess which one I like the most?  You have five guesses.  The first four don’t count. 

Is Owen just being ill-behaved some days, autism notwithstanding?  Absolutely.  He’s still a four-year-old boy, after all.  Do I feel sorry for him (and, let’s be honest, myself) from time to time?  Of course I do.  More often than I care to admit. This stuff is hard.  If it’s this hard on me, I can’t begin to imagine how hard it is on him.  Is he smart?  Heck yes!  Those things aren’t mutually exclusive, ya know?  I try (note, I said “try”…some days I fail - magnificently) to remember that not everyone has the knowledge about autism that our family has gained over the course of the last year and a half, and that causes them not to know how to act.  We have friends and family that have been constantly present in Owen’s life since his diagnosis, taking an active role and learning as much as they can about how to deal with autism and how to respond to his needs.  We have others that have been shockingly absent and seem ill-at-ease in what interactions they do have with him.  Everyone is different.

Little victories are big victories; big victories are huge.
With Owen, we find ourselves celebrating even the simplest of things. The most mundane things.  Little things that most parents take for granted, like asking for a drink or pointing out something interesting.  The first time Owen said, “I’m hungry,” I raced to the phone to call Bill.  When you think about it, “hungry” is a pretty abstract concept.  It’s not like saying, “That shirt is red,” or “The dog is barking.”  It requires a bit more processing than that.  Recently, Owen has started potty training. Talk about a HUGE victory.  We were certain that he’d be quite a bit older before we got anywhere with that because of all of his sensory issues.  He still doesn’t tell us he has to go very often…generally we have to ask, but that’s OK.  And yes, we make a big deal about it whenever he goes, clapping and cheering.  Every. Single. Time.

Your child is the same amazing little person that he/or she was the day before the diagnosis.
Owen still loves trains, chocolate, and his great-grandpa.  He still likes sneaking into Josh’s room, taking off his shoes and socks at inopportune times, and being tickled to the point of hysteria. He’s still goofy, independent, and stubborn.  Autism changes none of that.  The diagnosis has done nothing to squash his sense of humor.  Yesterday, he tripped over his own two feet and fell rear-end first into our storage ottoman.  I didn’t think he’d ever stop laughing.  He didn’t all of a sudden become dependent on mom and dad for everything (quite the opposite…he is fiercely committed to doing things for himself).  He certainly hasn’t become any more laid back.  If you think you’re the parent of the definition of “strong-willed child,” I will pit my kid against yours any day of the week and twice on Sunday.  We’ve just learned that however strong his will may be, we just have to make ours a little bit stronger.

There is absolutely no way to predict what the future will hold.
I distinctly remember the hour-long drive home after Owen received his diagnosis.  I felt defeated, almost torn in half.  Every parent thinks about the future.  Where will my son go to college?  What kind of job will he have?  What will his wife and children be like?  Those questions were immediately replaced with a whole new set of questions.  Will Owen ever be able to be in a mainstream classroom?  Will he be able to function independently, or will he have to live at home forever?  Do we need to make arrangements for him after we’re gone?  Six months after his diagnosis, I honestly have to say that the outlook seemed pretty grim.  Forget thinking about independent living…we couldn’t even go out to eat as a family.  Owen just couldn’t handle it.  A year later, after loads of therapy, iron supplements (that have been literally life-changing for him [and us]…not even kidding), and increased knowledge about autism, we feel like we can say, “Eh, maybe!”  His pediatrician is thrilled with his progress.  We see improvements daily. He’s a bright, happy, active little boy. One year ago, we would never have guessed that we’d be where we are now.  Who knows where we’ll be in another year?