Walking in our shoes

I've got a lovely vacation post to write, but there's been another topic on my mind lately. What with the recent developments with TH and homeschooling, I've run into a familiar refrain that has become like nails on a chalkboard to me. The chorus goes something like this: "I don't see what the problem is. Boys will be boys. Kids have to deal with this stuff. It just doesn't seem like that big of a deal." Which would make sense, I guess, if this didn't involve girls, too, and weren't a clear case of bullying the hapless special needs child. Sorry to sound all victimized, but there you go.

Anyway, I've got a few friends who are also special needs parents, and we sometimes try to consider what it would be like to have only neurotypical children, to never experience the day-in/day-out adjustments and accommodations, the askance looks from strangers and acquaintances, the tensions about the future that are unique to special needs families.

And so I've been formulating my version of "You Know You're a Redneck When..." except it's "You Know You're a Special Needs Parent When..." and have resolved (not in a New Year's kind of way) to share it with you. I'm sure you've got your own idiosyncratic lists--as with all things autism, contents may vary.

You might be a special needs parent when...

1. You spend time and gas money avoiding driving past a plant nursery or oak trees to avoid daylong perseveration on buying a plant or collecting acorns or (other unifocal interest here).
2. You find yourself seriously searching the dirt for hours at the park for cast-off walnut shells or (other unifocal interest here) for your child.
3. You have to come up with reasons why your child cannot sleep with a boiled egg or (other unusual object of perseveration here).
4. Your every trip to the playground involves one or more of the following: (1) watching children taunt your child while your child doesn't "get it"; (2) watching children back away slowly from your child, eyeing him (or her) warily; (3) watching your child wander away from the "fun" to linger alone on the periphery; (4) watching your child closely, prepared to intervene at a moment's notice when your child transgresses the usual norms of human interaction; (5) watching your child be unable to play with the playground equipment because of motor deficits.
5. You cannot take your child to a birthday party, other person's home, restaurant, store, or place involving crowds without significant anxiety and often a premature departure, sometimes involving peeling your child off of a doorframe.
6. You are constantly aware in public places that people are looking at your child, and not because he looks like the Gerber baby.
7. You cannot walk into your child's classroom at school to volunteer without being bombarded by complaints from the children (or teacher) about your child's behavior.
8. You've wondered, sometimes daily, whether or not your child will ever be able to find love or marry or date or even be able to start a relationship.
9. You've tried to explain your child's flapping or vocalizing or odd behaviors to others, hoping that they'll understand and be less judgmental.
10. You've borne disapproval--spoken or not--from other parents, relatives, or strangers who blame your child's behaviors on your bad parenting.
11. You've had to hiss at a total stranger who has taken offense at your child's special-needs-related behavior and is loudly bitching about it.
12. You've had people accuse you of using your child's diagnosis/developmental difference as an excuse rather than as an explanation of your child's behaviors and experiences.
13. You've got another child who's not special needs, and you find yourself in daily wonderment by comparison at their unfamiliar social and emotional behaviors. You're amazed to learn that some children do play with toys in the "usual" way, that they do say, "I love you" spontaneously, that they can have a linear conversational exchange that makes sense.

I'm not wallowing in self pity here. I don't care that we live with the above--it's our norm. We live, we laugh, we love, and that's all I can ask. But what our son does and has lived through is not "boys will be boys" or "kids will be kids." It's not the result of overconcerned parenting or uberanxiety or overindulgence or a need for spankings or the lack of an iron hand. And unless the critics put on our shoes and walk that walk, unless they can relate to what I've written above, they simply have no idea what it's like to live it, day to day, night to night, social encounter to social encounter, atpyical behavior to atypical behavior. And until or unless they do, it would behoove them to keep their comments and assumptions to themselves and try to learn a few things. Ironically, empathy would be a good place to start.