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Tuesday, December 9, 2008

A Tale of Two Mothers

As featured in the New York Times blog Motherlode


Image credit: Photo by
Omar Eduardo
on Flickr
Licensed under Creative Commons

I


A mother and her son are in line at a grocery store. They boy looks like he’s about nine or ten. The mother looks a little tense as the boy starts to fidget in line. At this age he really should be able to stand still. And watch where he’s going. He almost bumped the person behind him. His mother does nothing.

“When are we going?” he asks.

“In about two minutes. We’re almost done, buddy,” she says.

“No, not about. Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot.

Again, his mother does nothing to make him stop his rude behavior.

Fortunately, the cashier has finished ringing up the groceries and now the boy starts hopping up and down in place as the mother reaches into her purse for her credit card. He practically snatches the card from her and then after he swipes it, he starts shouting at her, “No! No! You do it my way!” She leans down and whispers something to him and he stops yelling, but he still hops up and down again, glaring at her and pulling on her and making those grunting noises rude teenagers do when they’re disgusted with you. No doubt she’s told him she’ll give him the candy she bought if he keeps quiet: rewarding and reinforcing his unacceptable behavior as bad parents do.

The cashier hands her the receipt and says, “Thank you, Mrs. Jones,” and the boy screams at the cashier as they leave, “No! You’re terrible!” The mother leaves without a word as the next customer in line rolls her eyes sympathetically at the cashier.

II


Today, I’m going to take my son Austen to the grocery store with me. It’s school break, and we need milk, the only thing Austen drinks.

Austen is autistic, which can make these trips hard for him. As a result, I schedule the bulk of my grocery shopping for times when he is in school or being cared for by someone else. However, sometimes I plan short trips like this one to help him get used to grocery stores (a skill he’ll need if he is going to live independently) or, like today, because we need some essential item at a time when I have no childcare options for him. When he does come along I make every effort to keep the visits to what we can both handle, so that they remain a positive experience for him.

To prepare for the trip, I’ve made sure that he is well fed, and I’ve arranged for his sister to play at her friend’s house so that I can focus on him. Since he thrives on routine and predictability, on sameness and scripts, I’ve reviewed what is going to happen when we’re in the store, so he knows what to expect. I’m also keeping the visit short; we’re going to get only what we need and then leave.

As part of his autism, Austen has sensory integration issues, which means that the way that his brain processes the information from his senses can turn a whisper into a scream or a tickle into a burn. Because of this, so much that goes unnoticed by others on these outings is painful to him: the store’s softly flickering fluorescent lights can look like a strobe and the incessant piped in music can sound like a rock concert, the aisles can seem breathlessly crowded with people, and the sight and smell of all these different foods can be nauseating; his own diet is self-limited to just a handful of items.

In spite of this, he does really well as we walk through the store. He stays close to me and doesn’t run off. He even talks about some of the items he sees on the shelves and points out some candy that he knows his sister likes, so we add it to the cart to bring home to her as a treat. He wouldn’t eat the candy himself even you bribed him with an XBox, so it’s wonderful that he thought of her. In fact, there are some who posit that autistics have no “theory of mind” at all — that they are incapable of realizing that others think differently. For Austen, it seems to be difficult, but not impossible, to see things from someone else’s point of view, and I celebrate it when he does.

As we pass through the produce section on our way out, a clerk says ‘hi’ and asks a question about the cartoon character on Austen’s t-shirt; they have a brief, polite conversation, although Austen has to pause a bit to gather his thoughts between sentences. At age two, Austen was not speaking at all and doctors first began to tell us that it was possible he was autistic. It took intensive speech therapy in his preschool years and the work of several loving and dedicated special education teachers to get him to the point where he can have this conversation today. Austen is tall for his age and the clerk is surprised to learn he’s only seven.

He’s handling this whole trip really well. All the work we’ve been doing to help him get comfortable is paying off. “You’re doing such an awesome job of helping me today, buddy,” I say.

All we have left to do is pay, but I get tense when I see there’s just one register open and the cashier is engaged in a complicated transaction ahead of us. We do the best we can, but even after a short, positive visit, waiting in line is hard. I think (hope) we can make it through the line without a meltdown. If we leave now, we’ll have to come back again later to get what we came for and the second trip is unlikely to go this well. After a little while, Austen starts circling me, which is what he does when he’s tired and anxious. He’s not hurting anyone by doing it, and he’s keeping himself calm. So, I breathe and hope the line moves quickly, since I can tell he’s used up almost all of his resources to make it this far. If we were finishing up and walking to the car now, as I had expected, the trip would have been perfect for everyone. I try to remind myself that sometimes, in spite of all my best planning, life happens.

At last he rolls his head back and sighs, “When are we going?”

“In about two minutes. We’re almost done, buddy,” I say. Oops, I’m tired and anxious too now, and I slip. This is the wrong time to say “about.” That’s a trigger word. Austen craves precision. We can work on estimates and inexactness like this at home, but the grocery store is the wrong place for it: just as running across a busy freeway would be the wrong time to stop and work on tying your shoe.

He also — as is the case in so much of the obsessive compulsive behavior that is common with autism — reacts to anxiety by becoming even more rigid and insistent on rules and routine in order to quell his rising panic. The more chaotic and unstable he feels his world becoming, the more he clings to the solidity and familiarity of the rules he’s created to soothe himself. That means the very public situations in which he’s expected to be most flexible are the very situations in which he most desperately wants the world to conform to his rules. Predictably, he protests my vagueness.

“No, not ‘about.’ Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot. Damn, he’s really had more than he can handle already. I didn’t think we’d have to wait so long in line. He’s been working so hard to make it this far, and I know he’ll feel better once he’s back in the quiet, familiar car away from the people and the lights and a whole store full of nauseating, offensive foods.

Fortunately, we’re at the front of the line by now and the cashier rings up our groceries quickly. Obsessive interests are another hallmark of autism, and a longstanding passion for numbers is one of Austen’s. He loves to work the ATM/credit machine, so his participation in this process is a way to end trips on a positive note. After some practice, we’ve gotten pretty smooth with it. He likes to push in the PIN numbers, and has finally reached a point where he no longer feels compelled to say my PIN out loud as he types it. We only run into problems when we have to use the card as credit, because he doesn’t like to see my signature. It’s incomprehensible and extremely upsetting to him that the bank wants me to scribble instead of printing my name in block letters like at school. Everything goes well at first, he takes the card eagerly, swipes it just right and gets ready to enter the PIN, but the cashier makes an error and we have to reprocess the transaction as credit.

Austen, overwhelmed by the wait, anxious that things aren’t going as planned and distraught at the thought that I’m going to have to sign rather than punch in a PIN, starts shouting, “No! No! You do it my way!” I lean down and remind him that when he gets upset in these situations, he’s supposed to signal me and let out his anxiety by squeezing my hand really hard instead of yelling. So, he hops up and down again, frowning and grunting slightly with the effort of squeezing my hand tightly.

At last, we’re almost finished. The cashier hands me the receipt and says, “Thank you, Mrs. Jones,” and I do my best to rush us out. Austen, exhausted and triggered by the formal use of my last name (“only teachers are called Mrs. and you’re not a teacher”) is practically in tears as we move toward the door. Unable to soothe himself with the hand squeezing any longer, he screams at the cashier as we walk away, “No! You’re terrible!” I smile weakly and shrug an apology from near the door.

All in all, it was a very successful trip, and once we’re clear of the store, I say, “I know that was really hard, but we’re all done now. You did great this time, buddy, even better than last time. High five!”

19 comments:

  1. Wow MPJ, I'd like think that I'm hypersensitive to these types of situations, but looking at it from where you are makes is difficult.

    My deepest sympathy to you, for your sons struggles but more so the way society ignorantly views you guys.

    But then again, if it makes an difference, I always seem to yell at cahiers as I'm leaving stores. They are meanies! ~AR

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  2. I so feel for you. I get annoyed with a slow line. I get annoyed with the slow person ahead that has coupons that don't apply to their purchases. and the lights are bright, people jostling, the cart behind me bumping me. I'm not even autistic. I'm just bitchy and want to be home. I cannot imaging how hard it must be for him. and for you.
    I hope he can grow into being able to deal with some of it, sounds like you are on the right track with him, and you are a very patient mommy.

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  3. I teared up reading Part I. I've seen it in the stores b4 and my work in the special needs community has left me aware of the variety of children's coping skills.

    Part II, I teared for Austen. Brave boy. Yet even the bravest of knights have dragons they just can't fight to the end. Again, the love between you, the trust between you - mother and son - melts my heart. If Austen does know about your Internet friends, please tell him High 5 from me, too. Although, only if it fits into his world rules. In that case, double High 5s to you!

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  4. Wow. I get this. I totally get this. I too have a son with sensory integration issues and I too try to avoid taking him to stores very often. I feel your pain in this post. Really, I do...

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  5. As I read the first story I had a feeling that it was about you and Austen. In a slight reversal of your story, when Poe was younger, younger than Austen is now, but not much, he was an angel in public. People would remark about how well behaved both of my children were, and they would shower their praises down all over me. I was pretty proud of myself for getting it right...parenting that is.

    Fast forward just a few years, and my quirky, but well-behaved Poe, started becoming "problematic". The phone calls from the school started with a trickle, and soon avalanched to the point that I started having PTSD panic sessions WHENEVER the phone rang, even if it was a Saturday and Poe was sitting two feet away.

    People were just as quick with their criticism as they had been with their praise, and that was when I really started to get it that how my children turned out had as much, if not more, to do with their inherent character than my mad skillz.

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  6. Oh, you could always have a t-shirt made to wear to the grocery store that says something like, "He has a medical excuse for bad behavior, what's yours?"

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  7. God, you're amazing.

    Even as an atheist I can hear myself adopting the meditation "God’s time, not my time" as I type. "The universe's time, not my time" doesn't have the same ring to it, but that meaning works great for me.

    Thank you.

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  8. P.S. I saw this and thought of you: http://motherandbride.blogspot.com/2008/12/daily-non-poem.html

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  9. I am so grateful that you are writing about bringing up Austin and all that it entails. The brief glimpse of the first story, had my mind set one way, but then after the full story I feel enlightened. And slightly ashamed of myself for jumping to judge so fast. It does me good to see the other side of the first story you told and as always your writing is a perfect tool to get the word out.

    Cat

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  10. Dear MPJ,
    Your story really touched me deeply. Since it was my story in a way.
    I have a brilliant daughter who is a great writer. She was diagnosed with schizophrenic a few years back. It has been very hard to go out in public for her. She was not bothering anyone, but it seemed that everyone was bothering her. I couldn't even go to movies, to restaurants or just a simple trip to the grocery store without having to assure her that there was no one who's talking about her, no one who's after us.
    My heart broke every time I looked at my daughter shrivering in fear. I don't have a supporting husband. He's a off-and-on recovering SA. I feel like I have to be strong for my daughter...but sometimes life just seems so tough!
    Reading all your inspiring blogs has given me some strength.
    Thank you
    Anne

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  11. I so, so feel you. One of my younger sisters has Down Syndrome and exhibits a lot of tendencies in the autistic spectrum, and I can recall several situations very similar to this with her growing up. Being an impatient and easily embarrassed older sister back then, it is extremely interesting--and hard--to realize as an adult what my mother has gone through with raising her. I can't imagine the strength it takes, and I get incredibly nervous thinking about what I would do if I were in your (or my mother's) shoes. Just wanted to commend you and Austen both for being so brave.

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  12. Eh, there's really nothing to say--it's nobody else's business. Someone who doesn't know the situation might look at what went on and think you need to have more control over your son, but YOU know that in reality, you and he were working together beautifully and that's all that matters. You're a fantastic mama, MPJ.

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  13. I really enjoyed this post. Makes me think about the next time i go and look at a temper tantrum child. Will give them the benefit of a doubt. Very beautifully written.... as usual.

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  14. P.S. I gave you an honesty award--check out my blog today.

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  15. My son is not autistic, but when he was 3, he went through of phase of not wanting to be in the grocery cart. He screamed like mad. But I had to get the shopping done. Walking out would be giving him what he wanted and proving that screaming worked. On three different occasions I kept shopping and pretended I was not getting evil stares.

    After the 3rd time he stopped screaming. He was well-behaved. People thought he was great. Now every time someone brings up screaming kids in stores, I tell them this story, and usually they realize that perhaps they are jumping to conclusions. Just, you know, maybe.

    I can usually tell which cashier has experience with children--he or she does their best to get you out fast. Sometimes perhaps we could all stand to show a little acceptance of those who might annoy us or drive us crazy--whatever their reason.

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  16. I cringed when I read the first story, and got the distinct impression that the narrative, with its narrow and judgmental view, was quite out of character for you. What's going on with MPJ? She's better than this- I thought.

    Then I read the second story, and I got it.

    Grocery and department stores are always a challenge for me, especially with the kids. We ALL get overwhelmed, distracted and cranky.

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  17. This is brillant. You put into words exactly what I have been dealing with with my oldest as she was growing up. Even now sometimes. I found that there is nothing I can say to the people, the looks, the eyes rolling because they are already making their judgements (she is so spoiled, her mother never taught her how to behave, etc). It use to make me crazy and added to my anxiety. I learned and try to stay as calm as possible, deal with her in the most calm and loving way I can and just ignore the looks. I try to focus on my daughter and trying hard to remain calm and loving, knowing she is not doing it on purpose or to be mean. Her brain is/was on overload. It does make me think twice I am one of the parents in line, watching a child "loose it." I wish I could help in someway, but I think my understanding and being nonjudgemental is enough. Excellent post.
    XXXXX

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  18. "Sometimes I wish I could say something to the people who are looking on. But what could I really say anyway?"

    Not a word. Just hand them a copy of this post. Magnificent.

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  19. This is an awesome post! Lets us all know that we don't have to assume a "misbehaving" child is a spoiled brat. Always two sides to every story. Basically every poster has already said a variation of what I said...just goes to show you how effective you can be Mary!

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