That was my first reaction when I read the report seen on the Autism Speaks website. They posted the findings from the
Family Stress Study done by the Interactive Autism Network. It looked at how having a child with autism affects relationships and reported on three major areas: Relationships with friends, extended families and significant others.
No big surprises. Basically, they talked about how isolating this experience can be. How many families and their children are shunned by ignorant and intolerant people, organizations and even churches.
How family, when supportive, was a wonderful thing. But when they weren't, it just added to the stress of handling this alone.
Last, but definitely not least, how it affects marriages. The good news is, turns out not as many of us as previously suspected are divorcing. The bad news is, some of the reasons cited for staying together included not being able to afford separation. Yikes!
This left me with some mixed feelings. Yes, it was a great affirmation for what most of us already know. That's why my initial response was to send this article to that long list of friends and family who just don't get it. Like a "see, and you thought I was imagining this" email.
But my second, more tempered idea was to let it be. I guess I've had a bit of an epiphany. I'm coming to realize that unless you live this experience, you may never truly understand it. Just like I can never know what its like to go through life blind or deaf.
Even more importantly, I'm coming to terms with the fact that not "getting it" is OK. I no longer fault others for not living my life. I'm even going a little easier on the whole judgment thing because, God knows, I've been judgmental myself, with or without knowing it, more times than I care to recall.
This report really struck a chord in a couple of ways. First, it mentioned repeatedly how having a child on the spectrum you realize who your true friends are. Boy can I relate to this. I used to have a pretty large circle of acquaintances, but when the going got tough, it was amazing how quickly they dropped like flies. No more phone calls. No invitations. We were out.
But to echo another repeated sentiment in the report, I no longer have room in my life for anyone who does not accept us -- lock, stock and barrel. And that's extremely freeing, my friends.
In a weird sort of way, I consider myself lucky. Not everyone can tell you with confidence who their friends are. They go through life surrounding themselves with a variety of superficial connections. I, on the other hand, know exactly who I can trust and am very blessed to have a pretty amazing support system. Most of them are families like ours, ones who face similar challenges. Some don't share my path, but are genuinely concerned, truly caring people.
I also realize I'm blessed in my marriage. We tend to prescribe to the what-doesn't-kill-you-makes-you-stronger school of thought, and since we're still ticking I figure our relationship is pretty darned solid. Crisis after crisis has forged an incredibly strong bond. We muddle through -- not always gracefully -- but still we continue.
The last thing that struck me was a single one word.
RESILIENCETurns out we're a pretty resilient bunch, and that left me smiling . We're strong and we keep fighting (no matter how many times we threaten to quit). And we show a heck of a lot of determination and moxie along the way.
This all gets me thinking somewhat philosophically. To sum it up, I'm in awe of God's master plan. To think he made me specifically for this purpose. However hard my road is, my life molded me for this exact job. He trusts and has faith that I can actually pull it off.
So with the Almighty backing me up, I go on. After all, it beats the alternative.
Yes, I'm tough. I'm tenacious. And, as much as it bothers my family, I happen to be just a wee bit stubborn. But come to think of it, these are not bad qualities when it comes to raising complicated kids.
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