Wednesday, October 1, 2008

Is this normal?

That's pretty much a rhetorical question. A trick rhetorical question.

I've never really had a desire to be normal, and I think that's been key to my survival. There's probably very little in my life that would qualify as normal, so abnormal is my normal. However, it does make it easy to forget that other people aren't likely to relate to stories about fuzzy kielbasa, disappearing small appliances, or owning a bust that says "I heart nurses" when there are no nurses in the family, but all things found in the woods are valued by children. Even the woods are strange here.

My sense of normalcy being completely skewed, I didn't realize how strange I must have looked this morning, cheering and doing the happy dance. Come on, my kid said "Momo!" How can anyone resist running to the top of the mountain, chanting "Momo! Momo!" at a time like that?

I guess normal people don't find parroting the name of The Avatar's pet lemur a big deal. When you're worried about your 17 month old hovering over the line between "It's probably normal" and "You might wanna look into that," Momo becomes your new god. Even when you're not quite sure what you would even do with a normal kid.

This milestone celebration had me trying to find the simplest way to explain myself to M's gymnastics classmate's mother, who suddenly realized I was a bigger freak than I had let on over the past few weeks. I told her that C doesn't really talk, and that it's had me a bit concerned for the last few days. I've been especially frustrated b/c I feel that, of all people, I should have been able to immediately recognize any hints of developmental delays.

J was diagnosed with Asperger's Syndrome when he was about 5. All of the honorary degrees colleges hand out to celebrities, and nobody has mentioned granting me one for spending over 5 years researching autism spectrum disorders. The world is a messed up place.

Anyway, despite the inability to pinpoint a direct cause, ASDs are considered, at least in part, to be genetic. And it's 4 times more likely in boys than it is girls. The math comes out to about 1:97 boys before factoring in diagnosed family members. I don't remember exactly what that number becomes, and I failed calculus, but I know it's a relatively creepy one. I never really worried about H and M, and they've turned out to be freaks of a different kind. Having another boy has really pushed me into walking the line between making too many comparisons and being blase about the whole thing.

For 17+ months, I've stuck to simply checking off my mental list of milestones as C reached them. Eye contact, check. Babbles, check. Knows how to piss off his sisters, check. Walking seemed to take forever but, before I could get worried, check.

It isn't like I haven't *noticed that C doesn't really talk. I've just been taking more notice to things like his ability to hear (perfect, and as selective as his siblings') and understand. He can even follow directions when told to throw something away or find a particular book. In my mind, all was fine. Well, other than the horrible whining that comes from the frustration of his not being able to speak. ASD-wise, I haven't found reason to be concerned. Somehow, it never occurred to me to wonder about *non*-ASD delays.

So, I told this woman at gymnastics that I am a little concerned, since J (who was right there and has been for weeks) is on the autism spectrum and I wouldn't want to miss any possible delays, knowing how important (and having missed the boat once) early intervention is. That explanation seemed to make sense to me. I figured it would make sense to most people. And then she said this:

"Oh, but autism means kids can't interact with other people, and he (the baby) is so friendly!"

Now, I don't expect random people to be well-versed on ASDs. I've slowly come to terms with the fact that there actually *are* people out there who have no idea what autism is. But here's this woman, who has spent 4 hours with J. She's seen him in action. She's watched him play with his siblings. She's chuckled while I've given him signals to quit chewing her ear off before finally resorting to just telling him to shut up before somebody jumped out the window.

I'm not sure how that kind of comment should be taken. Am I supposed to consider it an attempt to educate me on what autism really means? Is it a round about way of telling me I'm lying about my child being on the spectrum?

I don't have to be normal to be able to chalk up the comment to a foot-in-mouth deal, similar the the trillions I've made myself. This just happens to be the strangest one I've been on the receiving end of. Sure, I've been asked stupid questions. I've just never run into anyone who has tried to tell me what's what. At least, not in the past 4.5 years.

C has a new word, and that's what is important today. Maybe he is perfectly normal. Maybe I'm going to have to start studying for and designing my own diploma in speech therapy. With Momo being said so spontaneously, I think I should start watching my mouth while driving. If I do wind up filling out evaluation forms, I'd hate to have to write "Ho bag" in his word bank. But you might hear me screaming it from the mountain top!


Janet said...

Our oldest son is somewhere on the Autism Spectrum, but even knowing that, I still am not certain what Autism is and what it looks like. Chris always seemed normal to me. Ok, he was very speech delayed and he's quite clumsy (I believe the occupational therapists call it "fine and gross motor skill delays"). He doesn't make eye contact with people he's unfamiliar with and just plain ignores people he doesn't enjoy. But other than that... he looks normal to me. I'd love to meet more children with Asperger's Syndrome because I'm truly left wondering if strange parents raise strange children and there's nothing more disorderly afoot than that. Now the speech therapist my 4 year old is seeing is advocating sending him to a developmental specialist to make sure all is normal in his world. Speech delays are very common on both sides of our family (about 60% of children in the past 2 generations are speech delayed... about 60% of the adult males are engineers... interesting, no?). Other moms look at me funny if I mention the developmenntal delays and they kind of keep their own kids closer- almost like they're afraid it's catching. If I don't ever mention Chris has an ASD no parent ever makes mention that he's a bit quirkier than your average 6 old.I really had to laugh when I read about you telling your son to shut up though. We have been there multiple times already today. It's amazing how some children respond to indirect correction, "wow, look at that leaf. Aren't the fall colors pretty," and some kids change subject. Then there's my kid. I try all the polite, nice ways to change the subject and what we're left with is, "I don't want to talk about x anymore and no one else is interested anymore either. Please sit/stand/hop without speaking for 3 minutes while my mind rests."

Normal is a relative term.

PearlsOfSomething said...

My thoughts on nature vs. nurture continue to get even more tangled up as time goes on, but I can say that the engineers don't surprise me in the least!

My favorite parents-of-aspies group is very vocal with their motto: When you've seen one kid with Asperger's, you've seen one kid with Asperger's. Knowing several up close and personal, I've noticed plenty of shared issues, but they all come out in unique ways for each child. Different, even among the different.

The one thing I can say about J is that he's making great strides in his ability to segue. While his "conversations" are still more like monologues, and his topics are the ones *he wants to talk about, he's starting to find ways to make it appear that he's staying on topic. Somehow, it almost always turns into sharing his life story.

"Shut up already" may get me nasty looks from other people, but I doubt they'd prefer to have their ears bleed. And my sanity is very important. What's left of it.

The spinning, hopping, and fidgeting is a whole other thing. Thank MomoGod for trampolines!

For the record, of all of the professionals we've seen and worked with, OT has been the most beneficial by FAR. If I didn't think there was a risk of having charges filed, I would travel the country to give every occupational therapist alive a great big kiss.

Janet said...

Have you ever read Carol Barnier's book, "How To Get Your Kid Off The Refrigerator And On To Learning?" I also signed up to recieve her newsletter at She has some fantastic ideas for keeping the fidgets directed so they don't drive you around the bend.

I love your motto!

Lorrie Veasey said...

I think people sometimes say absolutely stupid things when what they really want to say is: that they hope you don't need to worry, and that they hope all will be well.

I hope you don't need to worry.
I hope that all will be well.