Tuesday, May 19, 2015

Choosing A Path

**This raw post is written by my personal friend over at The Spectral Zone. He and his wife, along with their two gorgeous boys, have become friends of our family since our move to D.C. They are on a similar, yet different, path we were on so many years ago. 
Sometimes, as veteran parents who have been in the autism diagnosis game a while, it's easy to forget or diminish some of the raw emotions we once felt. I asked my friend to write on any topic he wished and this is what he chose. As a reminder, the views below do no necessarily reflect mine. 

It's really f*cking hard to admit that your kid is different.

Ask any parent what they want for their kid and, after "healthy," you will hear some variation of "I want her to fit in" or "I hope she has an easy path."

I'm still trying to accept that Flynn's path will probably not be easy.

Here in autismland, one of our biggest struggles. is how to get through to parents with kids who are struggling, but haven't yet been diagnosed with anything.  Parents who are concerned, but can't put their finger on why.  Parents who look at our kids and see, to their horror, their own kid reflected back.  

It's hard to watch your kid struggle.

I've watched my boy struggle with a lot of things, things I sometimes interpreted as failures.  Often, his struggles come despite my best efforts to support him. It never seems to get any easier to watch.  But before we knew his diagnosis, it was about a hundred times harder, because two key questions remained unanswered.  I didn't know why, and I didn't know how to help.  

I think that good parents often have a (somewhat flexible) vision in their mind of who their kids will be when they grow up.  And by that, I mean not what they grow up to "be" (fireman, doctor, lawyer, etc.), but rather which values they will demonstrate with their actions.  For example, you might attempt to instill through your parenting the expectation that your children demonstrate generosity, kindness, compassion, critical thinking, intelligence, independence, resilience in the face of failure, a sense of humor, etc.

Most parents, hopefully, will understand that success in instilling these values will be largely dependent on their child's personality, meaning they will fail to a greater or lesser degree.  And they also understand that a small child will only be able to demonstrate a few of these.
But even with that knowledge, it's hard to fail as badly as I have failed at instilling certain core values in your kid, without questioning your basic competence as a parent.  One particular example of my failures is the neurotypical version of generosity.  Sharing is hard for most kids at one point or another, but when Flynn was two and three. . . .  It just didn't happen. 

When he had a vision of who should touch his toys or how they should be played with, there was no changing it.  He just didn't share toys willingly, for the most part.  Even now, at nearly five, we're still working on strategies to make it more acceptable to him.

This struggle should have been one of our first indicators that we were on a different path from most parents.  There were others we should have spotted, perhaps, but Flynn was our first child.  You're never sure what to expect with a first child, so some of the other quirks were easy to write off (with the encouragement of his pediatrician) as variations on "typical" child development.  He pointed to a couple things and waved a few times, so he's got those milestones down, right?  Never mind that he did it and then stopped for a good year.  As in regressed.  "He's fine," she told us. 

So when he wouldn't share anything, ever, it seemed like he was just stubborn.  And kind of a jerk, if I'm being honest.  At two I made excuses for him, but by three I was getting frustrated.  That frustration made me highly conscious of other parents' judgements, made me more embarrassed, and more likely to be harsh with Flynn.  I can't even count the number of parties we had to leave during his third year because some other kid approached him and wanted to use "his" toy (which he had found 5 minutes before). It was mortifying.
All of this just made me feel like a complete failure as a parent, despite doing everything "right," according to the experts.

This is just one example, but the years before he was diagnosed were extremely challenging, as a result of our failure to understand his differences.  So what changed afterwards?  Well, we knew to expect social difficulties, for one.  Shortly after he was diagnosed, a friend said to me, "Wow, you've really gotten good at advocating for him." Things that would have been meltdowns were now chances for learning and teaching.
I finally understood the reasons for his behavior.  Being more of a hard-ass wasn't going to make him suddenly understand the point of sharing.  He needed patience and instruction.  In fact, if there's one thing that being an autism dad has definitively taught me, it's that the hard-ass impulse we all get sometimes is almost always wrong during the early childhood years.

I'm pretty sure that, eventually, Flynn will be a generous and kind adult.  But we're taking a different path to get there. A path with explicit social skills training, lots of rewards for behavior we like. It is a path which takes his reality into account.  No amount of yelling / forced sharing (which, in his mind is just theft) would have taught him anything but resentment. 

And you can extrapolate this to most other social skills, and a lot of other settings. For his first year at school, we heard all about his difficulties, but nothing answered the critical question: why?  Why was he aggressive with other kids, seemingly without provocation?  Why was he melting down during classroom transitions.  Why was he so eminently distractable?  Why, despite a year in daycare and a year in school, did he still respond to school drop-offs as though we would never return?

If your kid is having problems, you owe it to them to find out why.  Will you like the answer?  Maybe not. Their path may not be easy.  But a label changes nothing, and a diagnosis isn't a destiny.  But an accurate diagnosis tells you the cause for their behavior, and once you know that, you can start answering your real question:
What in the hell do I do with this kid?  How can I help him?

When you know, you can start preparing a path.  If it's not easy, well, at least it will be a path. 

Flynn, drinking a bottle of water while sitting on a rock.