Thursday, December 12, 2013

Five Years With Autism

Five years.

That’s less time than it took me to earn a PhD, which acknowledged a certain level of expertise in my subject field.

That’s considerably more time than it took me to fall in love with my husband and know that he truly was/is my soul mate.

Five years.

It’s been five years since we were officially given Caden’s autism diagnosis.  You’d think I’d be able to claim expertise or know something for certain about autism in that time period.  Yet, looking back, I’d have to say that for every ten great ideas that we have had about therapy techniques or therapy items or autism management strategies, only one or so has really ever been successful.  On one hand, I can relive that day as though it just happened; I can feel my heart racing, my stomach drop, and anxiety rush in over wondering where we would find services, how we would pay for them, and what the future really looked like. On the other hand, that moment seems like a distant blur lost in the day to day challenges, struggles, and rewards that living a special needs life means.

There are some amazing contrasting moments to consider.  The first summer after Caden’s diagnosis he developed a phobia of bathing torture boxes otherwise known as bathtubs. We worked hours on end in therapy to try to conquer this fear, while also letting him play in the garden hose in the backyard because that was “safe” water in his world.  By midsummer we were even taking baby soap out to squirt on him while he played.  (And we wonder why the neighbors offered to help us pack when we sold our house.)  And yet this week he passed the next swimming level at the Y in record time.

We bought every “potty” chair, seat, stool, and book on the market to absolutely no avail.  Yet the summer that Caden decided that he “got it” he was potty trained in one day and has never had another accident again.

He went from nonverbal to verbal to nonverbal back to verbal again.  I think we have language now, but articulation and receptive language remain huge challenges.  We tread lightly though because when language becomes too hard or too embarrassing or too much, he easily gives it up.  I can’t even criticize him for that because my heart can only begin to imagine what a struggle this is for him each and every day.

He went from not noticing others were playing around him on the playground to now desperately wanting to play with them but not yet having the social skills (or language) to do so.  Sometimes I think the lack of awareness was less heartbreaking for him than this new found “progress.”

Who knew that the ABCs would remain an IEP goal for so many years but that we would know in a matter of minutes that ABA wasn’t the right therapy method for Caden or our family? When you add in OT/PT/SLP and CBT, it starts to become apparent that we have all learned a new language on the road that is autism.

I’ve bit my tongue more times than I care to count to avoid getting into vaccine debates or discussions over whether or not the desire for a cure means that you don’t love and accept your child.  I’ve lost sleep wondering if the decisions we are making are the right ones, and even more sleep when Caden proves that we don’t have the slightest understanding of his autism despite of our best efforts. I’ve researched until it feels like I can’t absorb another fact, and then started all over again when it comes to fruition that I was on the wrong trail.  I’ve wrestled with medication decisions while trying to weigh if my objections are in Caden’s best interest or purely my own desires.  I’ve defended our decisions to enroll him in Project  Lifesaver because I know the day is when, not if, we need help finding him in a busy mall or a crowded park.  I’ve thanked Elf, the super service doggy angel, more times than I can count for doing his job and more importantly being “the bestest friend” Caden could ever have.

If there’s one thing that I wish I would have known 5 years ago, it’s that autism would grow and change along with Caden.  The goals aren’t check lists to be met, but ever evolving dynamics to figure out. I guess by now I’ve figured out that I probably won’t ever figure things out but I can also say with certainty that I’m more okay with that now.  I’ve stopped trying to solve future problems now and have started focusing on the moment.  Sometimes those moments are funny, sometimes they are heartbreaking but they are always a part of Caden’s tale and honestly I can’t imagine being anywhere else.