So, you have a kid who registers "off", and you take that kid for evals, plural, and therapies, plural, and you deal with issues, plural, and you spend years doing this, and it becomes, shall we say, part of the scenery - the reality being that you have a kid who is just different.
I don't mean different like typical different. Everyone is different. I mean DIFFERENT. And different isn't bad, it isn't awful, it's isn't suicidal making - it's just different, ok?
The official label, because everyone and everything in the entire of society must be labeled so that everyone can understand why this kid is so different - falls under the umbrella of High Functioning Autism. Which that umbrella isn't one of those little, dainty, pretty pink and polka dot fold up and toss in your handbag kind of umbrellas, but it's more like that industrial sized gray patio umbrella, the one that takes a winch to unroll and takes two people to get set up straight - a lot of junk can go under that umbrella.
And if you were to set up that umbrella at a yard sale, say, well, that umbrella would cover a LOT of stuff. And much of the junk under that umbrella would be the stuff found at every yard sale - outgrown clothes, shoes, kitchen minutia. The typical yard sale fodder, the stuff everyone has rattling around in their house.
But you might find a treasure under that umbrella - a 1962 Kitchen Aid mixer, say, or a vintage Pressboard from 1923, or a mint condition Salvador Dali in a dimestore frame, a painting that looks like all of the others until you take a closer look at the signature. You'd snatch up such a rare find - of course you would! You've watched Antiques Roadshow, you know the rare things are valuable and worth a lot of money! - and you'd rush right home with your valuable, with a racing heart and sweaty palms while driving because
what if you got into a car accident on the way? What you have on the seat is precious. Be careful. Be cautious.
And when you get home, and you have that special, rare, unusual yard sale find - well, you'd have to do some research on how to care for it, maybe, or how to restore it, or what it might be worth
and you might have to educate those people around you who don't see that the really weird painting on the wall is actually a Salvador Dali, and don't appreciate the intricacy of such an amazing find. They would see that the painting looks just like all of the others on your wall, so why would you spend a lot of effort on just that one?
Yeah. Raising a neurologically atypical kid who presents as completely typical is kinda like that. Because she doesn't wear leg braces, require an insulin pump, hearing aids, or walk with crutches - this kid appears totally and completely just like all of the other kids. And for a large part of the time, she is. She goes to school and she has friends and she participates in sports and runs and jumps and eats ice cream and goes trick or treating and to pep rallies and skating parties
and wait. Back up there a second, home girl. Let's take a walk and process this.
When that neurologically atypical child attends such events, they overwhelm her and stress her out and the results - well, they are epically and amazingly horrible. But to everyone else, because they see that there are no leg braces or crutches or hearing aids or insulin pumps
those freak out meltdowns that occur when a completely fully saturated brain can't handle one more noise, one more light, one more stimulus or one more ANYTHING - those freak out meltdowns that are much like a dam breaking when it just can't handle one more droplet of water - well, they look like nothing so much as spoiled brat syndrome.
And when your kid cries and cries and storms around and cries and is rude and mean and hateful
one can be tempted to say that it's just spoiled brat syndrome and it can be really, really tempting to just blame the parent who is the primary parent, the one who does 99.9% of all of the parenting, the one who gets up at 5:30 and goes to bed way too late, the one who kisses the boo boos and helps with the homework and explains the math yet again and washes the clothes and drives all over a couple of cities to make sure that child does the activities that she wants
even though that parent knows that those very activities, the one the child begs and pleads to do so as to be just like everyone else
will leave that child in a sobbing, screaming hysterical mess
and will cause that child to look up at that parent, with tears running down her face, and say -
"Why am I weird? Why does my head feel weird and jumbly and why do I get so mad and why can't I control when I get mad and why is everything sometimes too loud and too colorful and people make so many weird noises? Why am I so bad all of the time?"
And you might wonder to yourself how scary that must be for her.
You might decide that it's better for your child to avoid pep rallies and you might decide that it's better if you take your child trick or treating so you can go to just a handful of houses and avoid the overstimulation that comes with going out with friends and you might decide that the nighttime skating parties - the ones that the school hypes up ON A SCHOOL NIGHT - will need to be avoided, which means that you will have to tell the rest of the siblings that it won't work for the entire family, for even if it's only one who just can't handle that means the whole family can't handle either, because a family is only as solid as it's weakest link, and right now, you yourself are that weakest link. You hate to tell your kid no, even if it's for the better of the entire family, for you don't want her to internalize that she's the reason for such restriction. And you might come to the conclusion that said realities mean that you really shouldn't go out at night, really don't get much of a break - because the damages that occur when the routine is tossed all to hell just aren't worth it. And you might feel very, very tired, and very alone, and very overwhelmed some days, multiplied even more so by the fact that, due to decisions you and your spouse made many years ago, you are the default parent, the go to, the hands on. And it's not that your spouse doesn't want to help but he can't, due to job restrictions.
And you might feel like the shittiest parent who has ever parented, all because you found a Salvador Dali painting at a yard sale one day.