I’m a bit of a conformist. It’s true. I have Uggs. I mean, they are the cheapo Target ones because I find the concept of wearing animals absolutely abhorrent. But also because they are freaking hideous. Still, I bought them – four times – and returned them three times. I do that, with minor purchases all of the time. Once I returned a can of black beans. I dunno. I can decide to get married and have a kid in seconds, but committing to the likes of can goods, well that’s HUGE.
So I digress, as usual, the point is that I like to fit in. Not at any cost of course. I mean I don’t do “the drugs” and I never rushed a sorority (actually, I probably would’ve but we didn’t have them in community college) but I certainly like to belong – somewhere – anywhere.
I bet you didn’t know that there were cliques in the 30-40 something Mommy society. And I’m certain, that unless you are an Autism Mommy yourself, you didn’t know that there are micro-cliques in the Autism world too.
Autism Mommies are fierce. Beyonce’s got nothin’ on us.
I mean whether you like it or not, you have to be a crusader for you child. Because they will get left behind.
Most Some of the Mom’s I’ve met are well-educated, compassionate, dedicated, and open-minded. But then there are those few who are, um, (how do I put this nicely) Autism Mommy bullies. The ones that will berate you if you choose the “wrong” therapy, diet, medication, school, or doctor. The ones that know it all. That have all the answers, and will be the first ones to share them, whether you want them to or not. And if you aren’t up to standard, watch out, because you will become a social pariah.
I suppose there are those moms in every circle. It’s just a bit more crushing, when you are supposedly on the same team and you get sidelined. The way I see it is that we are all fighting the good fight for our children, doing the very best we can, and that every child is different. Sharing our knowledge and experience is an integral part of the fabric of our community. Judging is not.
I’m fortunate to have a wonderful circle of Autism Mommy friends. We share all kinds of wacky ideas with each other, and celebrate our successes (few that they might be) while laughing (or crying) about the failures. I don’t feel that I have to conform to a certain ideal with my friends, and that is one of the few precious gifts Autism has provided.
So you can imagine how scary it must be to think something might happen that will separate you from the circle of women you consider your sisters. How painful it could feel to think you might not belong anymore.
P has had an enormous year of growth. He’s pretty darned verbal now (this does not mean communicative) and is moving to a blended classroom after the winter break. *Tonight’s not for discussing the behavioral and safety issues that have arisen, but soon I’ll be able to share that without it sounding completely like a pity party. We’re saying good-bye to our wonderful Autism class, our friends, and amazing teachers miracle workers (thank you Bonnie, Cynthia and Chris). It’s a big step; one that I am not entirely sure he is ready for, but we need to try.
Thing is I have such enormous guilt about P’s progress. Why are we so fortunate? What about my friends who work just as hard with their children? Why don’t they get the same results? It’s physically hurts my heart to share with them about our good fortune. Just like it hurts a little bit to hear about the milestones that their children master before mine. It hurts because I want the same success for all of our children, but also because I don’t want to become one of those people who seemingly cannot relate. By no stretch of the imagination is P “cured”. He still has BIG hurdles to jump and I don’t doubt that he will. But there is much work to be done. Why then do I feel so much guilt and self-imposed isolation?
We sure as hell don’t fit in with parents of “neuro-typical” kids (henceforth known as normal) either. I have been blessed with a few wonderful friends with normal kids who are amazingly supportive, sympathetic and know their boundaries.
For example, they know it’s not helpful to say “I totally understand because little Johnny had the worst tantrums at that age too.” Dude, I’m sure little Johnny could throw down with the best of them, but was it an Autism tantrum? Did he bite you and/or rip your hair out and jump out of your arms and run into oncoming traffic? Then lay in the road while you tried to pry him off the soaking wet concrete to scoop him out of harms way. Then scream like you were beating him within an inch of his life while you tried to buckle him into the car seat in the pouring rain? Was it so bad that you actually hoped someone would call the police so that you could have some help? Did he enjoy this routine so much that he did it daily for six months? Not so much? Oh, well then shut the hell up.
The average “just met in the grocery store” mom will bemoan the fact that her three year old won’t stop asking why, or that she/he wants all of the toys in the Target circular for Christmas. And you can smile and make small talk with that kind of stuff, but you’d be hard-pressed to build a friendship on it.
I’m also an all or nothing kind of girl. I don’t do anything half-assed. When and if I commit myself it is fully and without reservation. I persevere and I do it right – better than right actually. That goes for friendship too. Which is exactly why I believe god (if there is one) matched me with with a task as complicated and unexplainable as raising a child with Autism. Who better to teach me about fitting in, or not, than P?
It’s lonely in the middle, but the middle is completely subjective. And the middle can change day to day, minute to minute. That’s why in the end it doesn’t really matter exactly where we fall in relation to our friends children. It matters that we are all on a personal journey, together. We share the good times and the bad, and at the end of the day fitting in is just another thing we don’t have the energy or presence of mind to worry about.
I’m keeping the Uggs though.
Dedicated to the many wonderful women in my life, Autism Mommies or not.
Remember when I posted about P’s first “I love you Mommy“? Yeah, well that might’ve been been a teensy bit premature. I’m not feelin’ the love these days. Don’t get me wrong, he routinely tells Daddy, Mama, Papa, Grammy, his teachers, therapists, the mailman, and the Chinese takeout guy (by the way – Asia Cafe – vegetarian dumplings don’t *usually* include pork) how much he adores them – me “nah, not so much”.
Okay so kids with Autism get into routines. For example, I must ensure that Queen’s “Crazy little thing called love” is on repeat at all times in the car. (Funny aside here, I thought that song was by Elvis until like three weeks ago. I figure my husband is going to tell everyone about my lack of pop culture knowledge eventually so I’d better out myself first.)
Anyway, generally speaking I’m the one who prompts these “love” interactions most of the time. I’ll ask, “P, do you love <insert take out drivers name>” and he says “I love you, <not-vegetarian-dumpling-face-delivery-guy>”.
Once I said “Do you love Mommy?” and he said “No” and I did this whole “Boo hoo hoo, Mommy is so sad” thing. Which he found rather amusing.
So now it goes something like this.
Me: “P, do you love Mommy”?
P: “Yes. No, I do not love Mommy!”
Me: “Aww, Mommy is sad.”
P: “Mommy to cry her eyes. Boo hoo hoo”
It’s a fun game. I mean if you aren’t me, and if you aren’t all PMSing and insecure one night and end up really “crying your eyes” while your kiddo who has no concept of reading emotions laughs because he thinks you are playing a game.
And then he tells you to go to the garbage can.
And then you go downstairs and eat half a box of french truffles from Trader Joes and post macabre and vague status updates on Facebook while watching like 8 consecutive episodes of DVRed “I didn’t know I was Pregnant” and think I bet their baby says “I love you” and she freaking gave birth to him in a toilet and left him there cause she was all like “OMG, I didn’t know I was pregnant, I just thought I had to poop really bad”.
Pfft. Whatever. I’m Mommy! I’m the supreme goddess of “umm, mmm, umm”, eye kisses and “My Bink”. Take that pimply-faced college kid who sneaks non-kosher meat into my long craved dumplings!
In other news. Tonight in the bath P looks at me and says, “Let’s talk about the five senses.” I was all “Um, okay.” Then he says. “The five senses are smell, hear, see, taste, and touch.” (By the way, I had to pause while I was writing this to ask my husband what they were. Don’t judge. I wasn’t always this stupid.) So I said, “OMG, honey come here right now!” and had him recite them again. Then he’s like “You smell with your nose, you hear with your ears, you see with your eyes, you taste with your tongue, and you touch with your hands.”
I think it’s time for him to start balancing the checkbook.
Diplomacy used to be my gig.
I took etiquette classes. I know when to use the shrimp fork. I know when to drink Port wine. Hell, I even have a leather bound version of Emily Post’s Etiquette.
I made a career of being the quintessential Stepford Wife. I couldn’t make waves at a water park.
Yet, I am persona non grata at at least 40 different dining establishments in five different states. I’m not even going to mention grocery stores, pharmacies, doctor’s offices, post offices, Buddhist temples, and swap meets.
On Friday, P requested “mall and eat pizza”. Because even I’m not crazy enough to bring a three year old with autism who is recovering from strep throat and an ear infection to the mall on Black Friday I had the ingenuis idea to go to the eat-in Pizza Hut in town. I hadn’t set foot in a Pizza Hut since the days of the “Book-it” program. Remember that? Where you get a free personal pan pizza for every book you read? Good times.
He’s sitting like a “big boy” now, which is good since I was getting tired of the “are you serious?” looks I was getting when I requested a high chair. Until Friday we’d only done “big boy eating” at Red Robin (where they know us). It usually entails crawling under the booth back and forth between Mommy and Daddy’s side, not much eating, and lots of food on the floor.
I thought I had it all figured out, though. I downloaded some kid’s applications (like shapes, first words, coloring) for the iPod. Probably not the most socially engaging activity, but he couldn’t be happier. It’s his constant companion when we leave the house. The iPod is the single best investment I have ever made. I hear you can listen to music on it too.
Except this time, the battery was dead. Thwap! Way to go, Mommy!
You see where this is going. iPod goes sailing. Salad, and extra plates, are chucked onto the floor (thanks Follow That Bird), the bread-sticks are HOT “no, not hot, it’s cold Mommy. I need to clean it, cuh-lean it, CLEAN IT”. Somehow the word “hut” became offensive and no longer can be uttered or, for that matter, pretty much any word that might have an H, U, or T in it. (Three days later, he’s still gets all PTSD when we say the word “HUT”). The pizza was taking like, I dunno, three hundred and forty-five hours to arrive. We went for a walk, then another, then we let him run around the restaurant while we took turns chasing him.
Fail. Epic. I’m surprised the windows didn’t shatter from the shrieks. He was rolling on the ground. I tried to pick him up, he flailed and clocked me in the nose. I literally expected the police to show up at any moment – and we would’ve welcomed the extra hands.
Thirty-four dollars and three personal pan pizzas in take away boxes later (seriously – THIRTY-FOUR dollars – they should bring back the Book-It program) we made it home, where P enjoyed his pizza. He even asked to go back to the pizza store “tomorrow”. Oh.my.God…as if!
Suffice to say, we added Pizza “Word That Shall Not be Uttered” to our ever expanding list of places we won’t be returning to.
Today, I thought I’d let Daddy rest and venture to the mall with the boy. I had some Ugg-ish boots to exchange (cause I’m all cool and trendy like that). It wasn’t very busy, thanks to the economic decline, so I decided to browse the sale rack at Ann Taylor Loft. I took a few things into the dressing room while P did puzzles on the, now fully charged, iPod.
I tried on a pair of pants. And, I swear to you I cannot make this up, my son looked up from the iPod, surveyed me carefully, said “Mommy is fat” and went right back to his puzzle. I am pretty sure I heard a giggle from the next dressing room. I don’t think he actually knows what the word “fat” means. He probably just heard me say it every time once when I was getting dressed and repeated it. Needless to say I didn’t get the pants, because regardless I do value his opinion.
Tomorrow, while he’s at school, I think I might go for a run anyway.