My Whac-A-Mole Life   

Guest Post: My Family Just Doesn't Get It

Editor's Note: I've opted to keep my blog identity separate from my IRL self for several reasons (you can read about them here). Overall, I stand by that decision, even though anonymity is not easy...not to mention nearly painful when I have nothing to show for a day's work! Others in the special needs blogging world do not hide, and have found that everyone from their school district administrators to their mothers-in-law offer unsolicited feedback on their blog. It's cathartic, influential...and sometimes, they tell me, restrictive.

Here, a mother shares her disappointment in her family of origin's response to her daily autism reality. For her own, personal reasons, she is not ready to share her feelings with them (at least in this forum). So, I offered her - and other "out" bloggers - a quite, safe house, for when they have something to say that's too raw, too personal or too whatever for their own blogging space. She has a fantastic blog, but I cannot tell you about it here, because she has now joined my circle of trust.

I'm delighted to welcome my first guest blogger. If you are interested in guest posting (anonymously or in all your glory), please email me at whacamolelife@gmail.com...because I really could use the day off. 
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My Family Just Doesn't Get It

Since my husband had to work long hours all weekend anyway, I decided to take the boys on a five-hour journey across state lines to see my family. I'd like to go back to when I made that decision and talk myself out of it.

I know at the time, I was feeling a bit homesick and nostalgic. I missed summers as I knew them. I missed the big extended family gatherings. I missed being on acreage. I can officially say I am now cured for awhile.

I had told the family prior to the visit that the boys are autistic. That the little one has several severe food allergies. They said, "OK." They even seemed to understand a little. It seemed too good to be true. I should've known then that I was walking into a trap.

When we arrived, I got peppered with questions about the boys and autism. Almost everything I said was met with, "but most kids are like that." If I heard that phrase again, I was going to throttle someone. Thankfully as it became less and less apparent that "most kids are like that," they stopped saying it.

They may think I didn't notice the looks, but I did at meals. Yes, I let my younger child get up from the table before everyone else was done eating and go play. Yes, I made him a separate dinner. It was for our collective sanity in the situation. Just be thankful my older child not only tried what you cooked, but ate it all. Normally he'll take a plate full and then decide about five bites in that he in fact doesn't like it. This is only after he's sat and played with it long enough for the plate to get cold and icky.

Newsflash: kids get dirty when they play outside. No, I did not allow my children to play in the pond. There are snapping turtles in it, and the top was covered in algae due to the hot, dry weather. Yes, contrary to what you think, I was watching them ALL day. In the off chance I went to pee (heaven forbid), the cousin whose child they were playing with had an eye on them. Plain old dirt causes black feet too, and I find it funny that I had to wash them to let them in the house for a bath.

I got an eye-opening experience to what a gossip you are, dear aunt. I can only imagine what you will be saying about us since we left. I really don't care. I bent over backwards to try to make sure my boys conformed to your anal ways (even by their OCD standards). It was just too exhausting to stay with you. Next time, we'll either choose someone who remembers what it's like to have children (and central air), or we'll just get a room of our own at the nearest hotel. It will be best for all involved.

When someone didn't remember us, and you reminded them we're "the PA relatives," I am now almost relieved. I am over five glorious hours away from the gossip and drama that you all endure - living within about a 20-mile radius of each other. I am homesick for my family no longer, and I am thankful to my one aunt who was packing a flask and made me a gin with a splash of tonic at the family picnic to make my stay a little more bearable.

Am I Normal?

I wasn't going to post this today, but this ongoing conflict* within the autism community is eating away at me. So I'll make it quick.

I was hanging out with my son today in the kid's nonfiction section at Barnes & Noble, one of his favorite places on earth (well, it really could be the nonfiction section of ANY bookstore).

Leaning innocently next to the almanacs; the "Wacky But True"s; and the good, old "Book of Why," we saw this book: "Are You Normal?" (At least they had the sense to put normal in quotation marks!)

I'm sure that title was someone's seemingly clever way of cheaply and quickly repackaging a bunch of facts from the "humans" section of any of those other books I mentioned above, but National Geographic, REALLY?

This week's online autism community drama aside, "am I normal" is a very real, very poignant question for parents of any "quirky" kid. When they ask it, it can be glorious - because it requires a level of social awareness that might not come naturally. Still, when they ask it, how could your heart not skip a beat?

So my son sees this "Are You Normal?" crap, picks it up, flips through it, and puts it down.
Then he says this:
"Everyone should know there's no such thing as normal.
A lot of people are going to be disappointed."
I hugged him so hard.

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*Here are a few thought-provoking posts and comment streams from well-respected blogs that touch on this disturbing divide.

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.

You Might Be An Autism Parent If...

What the heck am I talking about? Not sure much of an explanation is needed, but still, read THIS for the back story: Twitter? I Hardly Knew Her.

Some additional favorites from Twitter Pals: