4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Friday, September 23, 2011

"Journey to DX" series, part 2, Early birds and worms and other such cliches

I suppose part 1 of this series about our journey to diagnosis begs the following question: why early?

Research shows that early intervention is an ASD kid's best chance of recouping lost development and managing her/his symptoms in a way that allows him/her to function in socihttp://www.blogger.com/img/blank.gifety. 
Research and professional experience are also now showing that most ASD kids are diagnosable between age 18 months and 3 years that the interventions work best during those very early years. 

So, why are parents waiting?

First, I think signs of high-functioning autism may be easier to ignore or "live around" than those of lower-functioning autism. A whiney, screaming, or constantly crying kid is much easier to deal with than the non-verbal one who's off flapping and stimming in a corner. 

But, that really isn't it, if we're truly honest. And we're ALWAYS honest (but NOT judgmental) here, my friend.

Every family has to find their own way, and this is something that we'll talk about later in this series. But, I opine, without judging, that the second and more important or real reason that parents wait is fear. They're scared that something really might be wrong. Scared that folks will judge their parenting prowess. Scared that people will be mean to their kid. Scared of "labeling" their kid. Scared of their kid. Scared of how hard and costly it'll be to find an answer. Just plain scared.

And, that ASD waiting game is extremely seductive if you're scared. Oh, you know the game.... "He's a kid. He'll outgrow it. We don't want to label him."

For a kid with autism, there aren't really worse words than these. These words are gonna rob him of the best shot that he's got at a "normal" life.

So, good, methodical lawyer that I am, let's take 'em on one by one. If we can unscare even ONE parent here, we'll be doing good.

Kids are kids. They are all different. Yep. Parents of typical kids will tell you that kids do tantrum and cry and obsess but that they also pretend and have fun and laugh and want to cuddle. These parents will tell you, if they're honest, that the tantrums (or impulsivity or not listening or crying or whatever the behavior) are fairly infrequent and diffuse pretty easily but that the parent is sometimes inconsistent and that the tantrums (or whining or crying or impulsivity or not listening or crappy kid behavior) don't get worse even with that occasional inconsistency. They'll also know (but often times can't express) that their kid is developing organically and spontaneously, just the way s/he's supposed to develop.

That last one can be a stumbling block for parents of typical kids. Often times, we, as parents, like to take credit for how our kid behaves. They're patient or good listeners or calm because we, wonderful parents that we are, molded them into that wonderful child. Well, that's fine if we then also take credit for the booger eating, sister strangling, and back talking. Can't have one without the other, my friend.

Having had the privilege of watching both typical and atypical children develop, I know that development happens in spite of our best (or worst) parenting. 4B always (and still) wants cuddles when he gets hurt. I didn't teach him that. 4C used to call for me in her crib when she woke up and give me a HUGE smile, wave, and "Momma" when she woke up. I didn't teach her that. 4D picks up any object even resembling a phone and pretends to chat or text (YIKES!). I didn't teach her that. These kids developed these attributes of their personalities or personhood in the daily fold of our lives.

An atypical child also lives in the daily folds of that same life but develops quite differently. Mine, for example (because if you've met one kid with autism, you know how it goes, you've met one kid with autism), never sought comfort when hurt or scared. Mine never pretended with that phone. Mine never sat up in her crib until a physical therapist taught her how. I "did" all of the same things with her as an infant (probably more because she was the first) that I did with the others. The other three developed organically. 4A did not. Instead of playing with that phone or waving when she saw me, mine knew EVERY single color, shape, and letter by age 14 months. Instead of having separation anxiety like all 18-month-olds do, mine recounted, from memory, every single SOLITARY word of the 24-page "Corduroy" storybook and flipped her shit about where my hands were on the page when I held the book. Weird shit. Not normal shit.

So, kids are kids. But weird is weird.

That leads us to the second seductive point of the ASD waiting game. And this one is super, luxuriously seductive. "He'll outgrow it." Really? Every single parent of an ASD kid can trace back every single ASD behavior to that kid's infancy or toddlerhood. Every single one. If that toddler is insanely rigid and ritualistic about where his cars go on the carpet and what color cup he uses, he's gonna be that SAME way later in life. Not about cars and cups but the big stuff.

This "outgrowing" business is tricky if you're just starting your ASD journey. Because you SO want it to be true. Because you don't have a crystal ball. Because you are so scared. I do have hindsight now, and I can tell you this...it does NOT get easier. Right now, in those early toddler-y, exhausting, maddening years, you have a LOT of control over a LOT of stuff. You also have the upper hand in terms of strength and size. Hand-over-handing a toddler to put on shoes is a HELL of a lot easier than doing it with a 5- or 10- or 15- year old.

So that brings us to point 3 of the ASD waiting game..."We don't want to label him." I have really, REALLY tried to understand this one. Really. I think that parents mean that they don't want their child treated differently or set apart as different. 

That kid (mine again, for example) tantrums and is oppositional/pissed off 23 out of 24 hours a day because you didn't wrap the woobie the same way around the Barbie that you did yesterday or because you took her to story time at the library or because you told her to wear shoes at the playground or because you told her she looks "pretty" when she thinks she's beautiful, and you think that a teacher or peer will only treat her differently because they know she has autism? Get real, please.

Nope. That kid IS different. People are going to notice that or treat her differently because she is different. Not because she has autism.

Moreover, you don't have to tell folks (or her, for that matter) that she has autism if that term bothers you so much. We are going to talk about this one later in this series, but for now, you ain't gotta tell nobody, my friend. 

This also ignores the obvious, that your child DOES need different treatment. The typical parenting tricks you've tried haven't worked so what makes you think that the typical friendship rules or typical classroom instruction are gonna work either? If your goal is for this kid to be or look "normal," that isn't going to happen without modification. That "label" of autism will allow that modification so that your kid can "look normal."

And, of course,  you know that there is no such thing as normal, right? Every single one of us is different, and we're ALL going to receive different treatment some day or other: because of our gender, who we chose to love, where we went to school, whether or not we believe in a higher power, what clothes we wear, what zip code we live in, what color our skin is, what accent we have, you name it. So it's happening whether you call this autism or not, my friend.

Someone who loves 4A and I very much once told me that teachers were going to treat 4A differently because of the label we had given her. I wasn't really capable of responding at that point in my life, but if ever presented with that statement again, I would say something like this. Yes, they are, and thank goodness they are. 4A objectively developed in a way that was different from other kids. Some of the very best autism doctors in the country performed the very best, gold-standard tests to determine 4A's neurological capabilities and deficits. They have decided, in their best professional judgment, that 4A has autism. The treatment for her autism includes things like behavioral supports, individualized instruction, medicine, and extreme consistency. Her teachers have no obligation to give her these things UNLESS they know she has autism. We, as her parents, would like her to be present in her life and to be able to function in a socially and age appropriate way in her life. She will only be able to accomplish this is she receives treatment. The only way to get treatment is for her to have that "label."

If one of my babies starts experiencing severe joint pain, I'm taking him or her to the doctor and getting a referral for a specialist. When that specialist tells me that we need Xrays and MRIs, I'm giving my permission. When that specialist finds juvenile arthritis and tells me that my baby needs medicine and surgery and physical therapy, I'm signing on the dotted line. And fast. Right? It's really no different.

So, does the early bird really catch the worm? Sure. That bird is up early, not because she wants to be, but because she must be in order to survive. And, she's going to eat that disgusting, miserable, dirty worm because doing so will let her live. Yep. That about sums it up.

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