As you may know, April is Autism Awareness Month. I think it's fair to say that most people ARE aware of autism in a way that they weren't a decade ago. It's a beautiful thing, knowing that the world is rooting for you. Still... autism awareness means something different in my house than it might in yours. And I'd like to share a little -- okay, maybe more than a little -- of my own awareness with you.
When I look at my family, I don't see autism. Oh, sure, it's there. But I think I experience it in the same way that most people experience the sound of their furnace running or the smell of their fabric softener. It's there. But it isn't something you really dwell on. Having said that, it wasn't always that way for me. Watching my son struggle to find words when other children -- including his twin sister -- seemed to communicate effortlessly... that hurt. The diagnosis -- or lack thereof -- was scary and frustrating and confusing. Autism carries with it an underlying note of uncertainty, especially when your child is very young. After all, most toddlers are impulsive and not terribly empathetic, so it's sometimes incredibly difficult to get a handle on what behaviors are "autism" and what are "normal 2-year-old kid." That whole "spectrum" thing is also maddening. How can you plan for your child's future when you have no clear -- or, hell, even moderately foggy -- picture of what that future might look like? Oh sure, I know life is uncertain. Anything can happen to anyone without warning. But we stay sane by making reasonable assumptions and planning accordingly. Autism pretty much tosses those assumptions out the window. And you must learn to fly in the dark. Without instruments. Sometimes, in bad weather. So, you pray a lot and laugh when you can... and you cry when you just... can't.
At age 11 (and a half!) Evan's future is much easier to envision. Sort of. I'm not one of those parents who imagines that my son's autism won't, in some ways, limit him. I can sometimes hear a collective intake of breath from other special-needs parents when I say things like, "Evan will probably never drive. He will likely not go to college. He will probably never live independently, without some kind of assistance. He isn't likely to have a career. He probably won't get married, or even date." Some people feel that *I* am limiting Evan by making those statements. Autism, however, has made me a pragmatist. How couldn't it? Faced with the certainty that your son will NOT eat Thanksgiving turkey and stuffing and mashed potatoes, you pack peanut butter and jelly sandwiches. Maybe other parents have gifts of time and patience that I simply lack, but there are just some battles I've stopped fighting. I prefer to think of this, not as losing, but as strategizing. And God bless those wonderful parents who have managed to coax more than seven foods into their child's diet.
Autism can, indeed, be incredibly taxing to every member of my family and to the other angels who watch over Evan every day. The meltdowns, especially on bad days, are exhausting and frustrating and demoralizing. I live in terror of the day when those meltdowns happen in a child who is bigger and stronger than I am. Because, in all likelihood, that day is approaching quickly. Meal planning is always a balancing act -- eat his limited menu or make two meals? Prying electronic devices out of his hands is an ever-present struggle. And then, there's the awareness that he's... different. He has wonderful classmates who are understanding and patient. But he doesn't have "friends" in the way most of us understand it. He demonstrates grade-level proficiency in his schoolwork, but couldn't possibly conquer lessons and homework without one-on-one assistance. Even with assistance, it's sometimes a very rocky road. Every child is unique. But Evan is a daffodil in a rainbow-colored rose garden.
And that's the flip-side of my own, personal autism awareness. I'm blessed with this flip-side and I know it. Evan doesn't have Asperger Syndrome. He has Autism. To my knowledge, he isn't concerned with his daffodil status. He's content to bloom in his own way, exactly the way God made him. Anyone observing him can see his lack of "normal" social skills. But Ev, happily frolicking on Planet Evan, doesn't at all seem worried by the social disconnect between him and his peers. He isn't aloof or non-affectionate. He loves a hug or a tickle as much as the next kid. He just doesn't seem to suffer from that desperate need for approval that most of us struggle with regularly. And Evan's autism is fairly-high-functioning autism. We don't experience the terrible burden of constant, violent meltdowns that some families face. He's toilet trained. He sleeps regularly. Evan has language, disordered though it might be. Heaven knows, he can tell you EXACTLY what he needs to, so far as his priorities go. Other children with autism aren't so fortunate. When our primary means of human communication goes away, the burden of autism must become exponentially more difficult. Anyone with an infant can understand the frustration of having an upset child, but not knowing what's wrong or how to fix it. Even Ev's moderate disability in this area is sometimes difficult to juggle. I cannot imagine parenting a child with no language at all.
Yet... families DO successfully shine with other colors in the autism rainbow. I'm a teacher. I've seen students with Asperger Syndrome who WILL drive a car and CAN live independently. And I've seen -- and greatly admired -- families whose children are profoundly limited by autism, but have adapted and thrived in spite of the challenges.
I've never really "learned to live" with autism. That implies some sort of active acceptance process that I never really participated in. I didn't DO anything. I just stopped noticing it as much. There are moments, incredibly painful moments, when I see the things my son will never experience and I grieve that loss profoundly. But the grief, thankfully, is my own and not Evan's. And most of the time, I'm brilliantly delighted with and overwhelmingly proud of my beautiful, unique daffodil.
April is Autism Awareness Month. Take some time to smell the daffodils.