You're Going To Love Me For This

I blog for all the right reasons (whatever those are)....usually. Today, however, I blog as a freebie whore.

Any blogger worth her salt gets weird stuff in her emailbox occasionally, including suggestions to "review" or write about some completely irrelevant product.

You see, companies - big and small - recognize the power, reach and influence of the social media platform...and presume "mommy bloggers" are frothing at the mouth to talk about how completely awesome that new laundry detergent is...and all you have to do is send her said laundry detergent for free (or even - wow - a half-price coupon for it). In turn, she presents her readership to them on a plate.

Now, some people apparently make big money doing this, and I salute them. In other news, I have yet to meet "some people."

But you know what? Today, I don't even care. Today, I get to reap the benefits of this blog with a product much more exciting than laundry detergent. I shamelessly CAMPAIGNED for this freebie because I wanted it so badly. And, dear readers, not only did Sensory Goods willingly agree to help me "sell out," but they upped the ante and offered to give one of you an amazing freebie too.

Behold! I give you a custom weighted blanket. These babies are not cheap. I've been wanting to try one on the kids for years, but never wanted to cough up the money on something that could be a big bust. (And make it myself? That's funny. Have we met?) Also, I was overwhelmed. What weight? What size? What color? Where's my coffee?

Sensory Goods gets us....they're one of us. This company, founded by a family with two children on the autism spectrum, has a mission to "meet autistic and sensory integration needs while meeting the financial need of those caring for people affected by these developmental disorders." Let's say it together: Aw. 

A Broken Keurig, Instant Grits & Other Travesties: A Morality Tale

At its heart, autism is a communications disorder. The DSM-IV checklist lists "qualitative impairments in communication" as a diagnostic criterion. 

My daughter? Check. Plus.

She also has - by anyone's diagnostic standards - a voracious appetite. I wouldn't call her a "picky eater" (tree bark, anyone?), but she can be fickle and demanding at times. Girlfriend knows what she wants.

So, chasing her into the kitchen yesterday, I found her ripping open a package of instant grits. (I didn't even know we had that!) Ever self-sufficient, she proceeded to dump it into a disposable, hot cup and pivoted around to, apparently, run hot water through the Keurig to complete her snack.

I know it sounds like she's an independent, little chef, but we do not allow her to operate anything in the kitchen alone. We know better. So does she!

What she didn't know was that our beloved Keurig didn't work anymore (boo hoo!), and I had removed it to try and return it. 

I wish I could have captured the look on her face. The Keurig might possibly be the most important, frequented appliance in the house. Poof! It was gone!

What would your 8-year-old do? I imagine, at this point, many would call for Mom (I was standing three feet away), ask where the machine went, demand help.

I watched with curiosity. Ever resourceful and independent, my daughter simply turned to the refrigerator and  filled the cup with water from the dispenser.

Of course, now her grits are ice cold (as well as completely over-saturated, but that's besides the point). 

Now, does she ask for help? Uh uh. Oh, she's very frustrated, yelling a little, but she just decides to move on to the microwave - where our story must end with an angry intervention. No, my autistic 8-year-old is not allowed to use the microwave.

The whole incident reminded me of my years-ago Floortime training...learning to create a "circle of communication," a reciprocal, back-and-forth interaction. 

Nope, not a single circle of communication going on here, but there were numerous opportunities to create them.

One Floortime strategy is to engage a hard-to-reach child using a "playful obstruction." Do something that will get their attention! Wear an unexpected, silly hat. Join the child while they are lining up cars, and then make the cars crash. Any resulting eye contact, interaction or response to the action counts toward your Circle.

No hot water? No coffee? You certainly have my attention! 

Yet, communicating with me to help her solve her problem didn't even occur to her. 

While she's come a long way, communication always will be hard for her. She's severely apraxic, so the actual act of speaking clearly is a huge obstacle for her. Sign language and augmentative communication devices like her iPad offer wonderful alternatives, and I am grateful every day for them. However, they only work when a person is motivated and interested in communicating. 

Wouldn't you agree that communicating and interacting with me to solve her devastating, instant-grits problem was the most likely, obvious and best course of action? 

Unfortunately, for her, it also was the hardest. 

Collateral Damage

When you see my daughter, I am rarely far behind.

I remain Mommy on the Run, following her unpredictable lead and trying to channel her enthusiastic energy safely and "appropriately." For example, while I respect and support her interest in teeth, I cannot allow her to put her hands in others' mouths. That's a social confine that - no matter how "neuro-diverse friendly" you are - simply will not bend. ***

I've noticed a shift, however. A pattern that - in my completely non-expert opinion - signals marked improvement in her understanding and engagement in our world.

In the past, an hour with my sweet, Tasmanian Devil might result in random acts of destruction aimed at furniture, kitchens, walls, cars and so on. Turn your head for a second, and you might be fishing her or her iPad out of the toilet. Theorists advise that every action really is a form of communication - especially since she's largely nonverbal - but translating some of these doozies was nearly impossible...except to acknowledge that she was frustrated (and so was I).

With appreciation for Sunday Stilwell
http://www.autismwashere.com

Moreover, I will not discount my daughter's proclivity for mischief. Even without the big A, she no doubt would be a charming rule-breaker. So, as you can imagine, my extreme-helicoptering was required simply to keep the house in one piece. 

Lately, while things are still getting broken and such, I can see some clear rationale to her actions. It's no longer me muttering to myself that she must be bored, frustrated or sensory-deprived.

See, we've loosened the metaphorical leash - just a bit. We recognize that she knows more than ever when she's doing something inappropriate. She'll probably still do it, but I have fair warning since she'll give me that sneaky smile before dashing off. So her actions are closer to the the "all kids do that" behaviors you might read about in "What to Expect" articles. So most days, while she requires infinitely more supervision and direction than your "average" eight year old, she's able to at least spend a few minutes independently - in the bathroom, reading something, watching something, or YouTubing (as long as I listen closely for sounds of bloody surgical segments, that usually are accompanied by her giggles and a gleeful, "ewwww").

Recently, during a moment of freedom, she raced upstairs and grabbed her father's electric razor. It occurred to me afterwards that we were talking about shaving (probably me wondering when I last shaved my legs). Another time, we instructed our son to go brush his teeth, and I soon found her in the bathroom, squeezing a tube of toothpaste all over my toothbrush.

My laptop's monitor is shattered because of her interest in using MY computer, rather than her very own iPad.

Here's a good one. She drew on our inside window curtains recently, something that might elicit shock from some parents (clearly not autism families). But that's not even the significant part. What's interesting is that it was not a childish drawing. She'd outlined her desired plans for the day in a simple list form ("doctor" included), much like on a whiteboard.

Then this happened. I've been spending a lot of time at the eye doctor lately...my aging eyes are rejecting my beloved gas-permeable lenses of 30 years and I'm trying to switch over to soft. "Putting my contacts in" has become a process instead of the usual pop in/pop out. Yesterday, when I went to put them in, I found one missing and one dried out from exposure. I'm not sure whether she was attempting to clean them, wear them, or "help" me, but I suspect it was soon after a mention of said lenses.

This new pattern of damage is of a different variety than her earlier destruction. She's listening! She's engaged! She's trying to be helpful! She's imitating mommy and daddy! 

Now I might have mentioned before that one of the best things ever taught to my daughter was mimicry (see Do Children With Autism Lack an Ability to Imitate?). I am not trying to make her into a robot; she simply must learn how to learn. It's critical that she knows how to copy vocal sounds (PROMPT has been so helpful), gestures (to nod yes or no), and actions (brushing teeth). There's a lot of research out there about mimicry as a communication foundation. 

So my epiphany here is that while I'm still Mommy on the Run (or Mommy with the Hoarse Voice from yelling and repeating myself), the destruction is different these days...encouraging even. She's interacting with our world...in the now! She's communicating by participating.

The is the kind of damage I completely welcome from her. The frustration, inconvenience, cost and toll of my daughter's destructive activities can be attributed to collateral damage: an unwanted but necessary byproduct of a greater strategy.

***Footnote:  Instead, of touching strangers' teeth, she spends hours on her iPad watching and playing dentistry and medical-related media. We "wave" at every dentist and orthodontist office that we pass. She loves to play on http://mydoctorgames.com. Hey, it's better than her phlebotomy phase, for sure!

Managing Your Child's Medications: A Lay-Parent's Guide

We're on drugs. Yep, you name it (duh, legally prescribed drugs), we've probably tried it. I can't say I'm as drug-savvy as Nancy Botwin, and we certainly don't grow or sell them, but we do manage them. Doses, prescriptions, times, counter-effects, interactions, half-lives - it's a lot to take in when you're just trying to keep a kid from scratching your eyes out.

This post is NOT about the pros and cons of medicating children. It's a highly personal, emotional issue for many of us, and I don't wish to debate that here. Obviously, medications are not always the answer. Medications alone rarely are the answer. And unfortunately identifying the RIGHT medications and dosages often can feel like chasing a carrot: just when you think you've nailed it -bam! - the kid has a growth spurt; or completely new symptoms; or they stop making THAT pill in THAT dose; or something else.

Nonetheless, I chose to add medications to our treatment plans, and any reservations I had quickly dissipated after witnessing undeniable, SIGNIFICANT results.

Of course, that doesn't mean I love doling out psychotropic medications any more than I like my kid's melatonin habit. However, I defer to the age-old wisdom: if your child needs a wheelchair, you provide the wheelchair. Yes, you also offer therapy, rehab, counseling, sporn flushing, and so on, but you must provide the wheelchair.

Anyhoo, I've become somewhat of a preachy busybody on this topic because I screw up a lot, and it makes me feel much better to pretend I've learned something from it. So, as much as I support the use of  psychiatric medications when needed, I am militant about the following pointers. If you have others, please share them below, because I'm pretty sure we will continue to be a poster household for Big Pharma for many years to come.

No, It's Not Okay

My daughter has autism. She's beautiful, smart, loving and full of personality... and she has autism. She also happens to be one of those autistic kids with "behaviors."

Now, the parenting manual (what? you didn't get one?) states that parents can produce well-behaved, respectful children with a few basic tenets that usually come down to these:

• Set limits.
• Be consistent.
• Be patient.
• Reward positive behavior.
• Clarify expectations and consequences.
• Follow through.

Actually, I believe these easily apply to kids with autism, too...if you set them in all caps, bold them, raise the font size to 42 and keep your fingers crossed.

My daughter has and follows lots of rules. I don't even know some of them. Like every time we pass a certain restaurant on a Tuesday when it's raining, she gets a Frosty. Because that's what happened before - ONE Tuesday, ONE time, when it was raining.

You see, there's really no such thing as exceptions, special occurrences and temporary changes in routine. To her, every occurrence simply is a new precedent that she files away in that mysterious superbrain of hers.

As for rules that we intend to impose on her...well - and I probably can't even blame autism for this one - she thinks breaking those is hilarious. There's nothing more entertaining than someone in trouble. Especially if it's herself.

One more little reminder before I go on: she has no regard for social decorum. Yet, the world around her requires it - for inclusion; acceptance; safety; and even civility (we just can't all walk around without pants in most parts of this country).

Now, like many like-minded parents, we have invested ridiculous amounts of time, money, energy and tears in hopes that our sweet, mischievous little girl could learn to retrofit herself into our strange and dangerous world. This world has many social expectations that make little sense to her - like not hugging strangers; not stealing food from others' plates; not wandering hotel hallways alone; not shoplifting; and so on. While she likes to do all of these things, and as much as I respect her individuality and her independence, I simply won't allow them. Even when you tell me, "It's okay."

Look, I know you don't mind if she grabs the pickles from your sandwich. And I know you barely know her, but her hug really made your day. I realize that, by allowing her to do these things, you're intending to be kind, or helpful, or supportive.

But when she sneaks up behind you and yanks your ponytail holder out of your hair, I really do have to reprimand her. We both might think it's cute (and OMG she is cute), but it's simply not acceptable. It easily will snowball into a month of drive-by hair snatching, ponytail-holder hoarding, hell, I don't know...something that inevitably will take me by surprise. And while I know you probably don't mind, I do. And society certainly will.

Further, when I scold her, you probably will think my reaction surpasses the crime. Or that I'm just really, really mean. I assure you, I'm not half as tough, consistent or patient as the job requires. But I love her beyond words and I know her potential, so I try.

Maybe you're thinking that, as her special friend (great grandmother...favorite teacher...fairy godmother...whatever), you should be allowed to indulge her. Of course it's "okay" with you if she pulls the band aid off of your paper cut. You're thrilled at the chance to make her happy.

However and especially BECAUSE you love her, you should know it's not okay. She adores you, yes, but she will not necessarily differentiate this behavior between you and strangers. Safety aside, even if it's cute now, it will get less and less cute as she grows older.

So, the next time she swipes your baby's sippy cup or follows you into the bathroom for a peek, please don't giggle and correct me when I discipline her...or harshly remind her of our rules and expectations...or tear my hair out. Because no, it most definitely is not okay.