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?
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