Monday, August 29, 2005

A Loss For Words

The gig was over, and it was time to pack up and get out of there. We brought the kids to come see dad play at the Willingboro Jazz Festival, but there was no way we were going to be able to stay once dad’s band was finished playing. It was hot, and each of my kids was falling apart in different ways. My oldest was completely mortified that his autistic brother had just been dancing to the salsa music not far from center stage. He begged me to make him stop, but I told him to just leave him alone and let him dance. I knew exactly what he was thinking. He was remembering how his brother danced in front of a crowd of people many years ago at another outdoor jazz festival, how embarrassed he was then, and how—just like now—I wouldn’t make him stop. He got up and stormed off. I didn’t know where he was going, but I wasn’t really concerned either. We both had our cell phones.

My youngest was tired and sticky and had had enough of sitting outside in the blazing heat, even though we had brought folding chairs hoping to make it more comfortable for everyone. It wouldn’t have been a family outing without at least one woman getting up to move her chair away from us, so of course that happened, too. My middle son, the autistic one, wanted a giant twisted pretzel with extra salt, but when he took a bite out of the part that was saltiest, he spit it out in a loud spray and got the classic startled look, hurried fidgeting, and chair shift and turn.

As soon as the last note played and the first set of hands clapped, I collapsed all the chairs and started shoving them into their sleeves. We all started marching for the car when my husband intercepted us and said I should come and say hi to the band. I didn’t want to. I was getting anxious. I started making up excuses about bathrooms and kids killing each other in the car. It didn’t matter. I ended up having to go with my little one in tow, all the while hoping I didn’t come back to the car to find that the older two had been pinching and punching each other the whole time. So, while greeting and shaking hands, I kept looking back at the car feeling nervous. My husband wasn’t, though.

“But they’re going to kill each other,” I said.

“So, let them,” he said.

I laughed about it later in the car with my oldest son. I said we should call dad The Mayor. He likes to schmooze; I don’t. Then again, I am not the one trying to drum up gigs and make connections. Maybe my husband just wanted the band to know he was still actually married. It has been many years since I’ve been to one of his gigs. Before we had kids, I used to go to all of them.

So we were back there behind the stage meeting and greeting, when my husband took us over to one of the band members and his wife, who was holding their daughter on her hip. I was also holding my son on my hip. As awkward as that might have looked, I do it all the time. Sometimes I think I do it as much to anchor me to the ground as to keep him comforted and contained. He weighs close to 40 pounds.

“This is my wife. You’ve met Lisa, haven’t you?”

I shook her hand, but I don’t remember if I said anything or not. Then he introduced our son to her. He looked away and didn’t say anything.

“At a loss for words, huh?” she said.

Everything stood still for me at that moment. My face went blank and I didn’t say anything. I’m sure I was expressionless. That’s because I was trying to process these words. They sounded strange to me, and something wasn’t right about the scene itself. Her daughter wasn’t saying anything either. Her baby was probably two years old, though; my “baby” is going to be four in November. Still. I wondered why she said that. Of course, she couldn’t have known the impact those words would have on me, considering that my littlest son is probably autistic, too. She couldn’t have known how many times other people have said similar things to my son in public. How could I be mad at her when she did not even understand how loaded her words were? To her, she was just making light chit-chat. To me, the words packed a powerful punch, but not in the way they used to. I marveled to myself that I was not getting mad like I usually do.

I started thinking about all the people in checkout lines who have tried to engage my son but were unsuccessful. One was a customer in K Mart. He editorialized that my son was a “man of few words.” I might have mumbled something about my son just being shy. I had used “shy,” “sick,” and “sleepy” many times before as excuses for my son’s lack of eye contact and speech. Another was a bagger at our supermarket who really got my panties in a bunch one day. My son was sitting in the little seat, and the bagger was talking to him but getting no response. Finally, he waved his hand in front of my son’s eyes and turned to the cashier and said:

“Is he awake?”

By this time, my son was a little older and my mood had shifted from denial and excuses to anger at people’s audacity. I was in the “It’s none of your business!” and “How dare you?” phase of handling having another autistic child.

But today was different. I realized I had undergone some kind of transformation, because the words no longer evoked a visceral response. I wondered at first at the words themselves, and why anyone would use an idiomatic expression like that on a 3 year old who wasn’t talking, but then something else happened: The words, or their meanings, started shape-shifting inside my head.

“At—a loss—for words?”

All of a sudden I began to realize what the real problem was, and why people everywhere I go feel compelled to engage with my son and then comment if they don’t get the response they expect to get. The problem was not with my son, but with them.

Most neurotypical people are hooked on words. They want them. They need them. If they don’t get them, they persist or protest in many ways. When they encounter an autistic person or a child who is supposed to be talking and isn’t, they find themselves at a loss for words because they do not get the expected response. This makes them uncomfortable, so they feel compelled to make some kind of comment. Sometimes the comment is meant to be polite and light-hearted; other times, people can come off as intrusive and rude, like the bagger in the supermarket. I’ve seen strangers make excuses for my child, saying, “Aw, he must not be feeling very well.” But no matter where we go, other people find the need to openly interpret why my child isn’t talking or engaging with them. I don’t do this when I meet children. I observe them. Maybe I don’t have as great a need for other children to communicate with me. Maybe I don’t feel that every observation requires a comment. Maybe it’s because I’m just used to my kids not talking to me.

A year or two ago, I picked up the habit—echoed from other mothers saying this on playgrounds—of telling my middle autistic son, who is eleven, to “use his words” instead of acting out physically when he was upset about something. He would hate it whenever I would say, “Use your words.” You could see that he was distressed. He would arch his back, close his eyes, cover his face, and say, “I can’t!” in a squeezed, guttural tone of voice. I dropped this expression soon after because it was upsetting him. My son is verbal, but it still pains him to “use his words” when he is stressed out, overloaded, and ultimately melting down. You could say that he is verbal at times, and nonverbal at other times. He uses his body to express extreme feelings. When he is upset, or embarrassed, or something else unknown to me, he turns into a “tiger” and bites me, or other times he flops down on the floor. Kicking the wall means something else, too. So does an arm squeeze. When he is happy or feeling proud of himself, he will rock on his feet, back and forth or front to back, and smile at his fingernails. He might make some happy noises, too, while cocking his head to one side. My son is a performance artist of sorts.

All of these bodily movements have special meanings to my son, and someday he might be able to map them out for me, if he wants to. But he doesn’t need words to express his feelings during those times. He has movement. For all I know, those movements don’t even have words in any language. My mother once said that in heaven there are colors we have never seen. Every time I think about colors I have never seen I get kind of stuck in my mind. It’s kind of like contemplating infinity.

Is it autistics who are “at a loss” because they can’t speak, can’t speak yet, or can’t speak the way other people expect them to, or is it neurotypicals who are “at a loss” because they rely so heavily upon words for communication? While demanding that their kids “use their words” all the time, are they missing other nonverbal cues and gestures that could be even more meaningful and that maybe don’t even have words?

My youngest son melts into my arms when he hugs me. Sometimes when he is hugging me deeply, he will rock his body, slightly, while humming. I start humming, too. There are no words to express the feeling that comes over me. It is more than affection, more than love. When I’m getting him ready for bed, he likes me to throw him on the bed. He gets so much joy from that, and after I throw him, he will often just stare intently into my eyes, smiling broadly. This look means more than just, “That was fun.” It’s more like, “I love you. Thank you. That was fun. Thanks for understanding me. Thanks for knowing what I like. Thanks for being my mom.”

I am trying to teach my children verbal language, and I do use words as my primary mode of communication. But, I realize now that in my quest to teach language there are many things my kids have done along the way that I may have missed, considered unimportant, or considered less valuable than the spoken word. I don’t consider myself neurotypical, but because I can be very rigid and rule-bound, throughout my life I have been intimidated by social expectations and ruled by perfectionism. This has spilled over into my parenting and teaching, and it has often caused more harm than good.

All of this brings to mind a very unusual Bible verse:

Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. (Romans 8:26)

In the realm of the spirit, even the most verbal person is nonverbal. He may be at a loss for words, but he has gained communication with God. Words are no longer relevant. Are spoken words as important and as powerful as they are thought to be, or are they overrated? If most neurotypicals are overly reliant upon words—to the exclusion of other forms of communication—who is at a loss, really?

Lisa Jean Collins c 2005

10 Comments:

At 5:02 PM, Anonymous Anonymous said...

Holy Crapoly!! Much more moving for me than the first one. The personal aspect of not only the way you write, but the subject matter is really powerful!

Okay...I agree with you that we (neurotypical) have been conditioned with call and response-type conversations - especially those we have with strangers. We say "hi" and expect one in return. If we fail to get that response we think the other person rude. I agree that Don's bandmate's wife was just trying to be polite because she was at a loss for words when not given the response she wanted.

Zev gives me a similar "look of love" - like a deep loving stare that I can only feel, but not really verbalize. Please... you're telling me that words can express the deepest of feelings? Or adequately capture most thoughts? When people work with Alzheimers patients (bad example, I know), you cannot rely on their words to communicate; that in no way means that they are not communicating!

Becoming a mom, I have come across so many parenting books. Your essays provide particular insight into real parenting. If you compiled them and presented them to a publisher, I know I would buy it! You not only write superbly, but make the reader want to read on and on. I didn't want the last one to end! Maybe it's because I know the people involved, but more importantly because you touch upon universal truths of relationships.

 
At 3:28 AM, Anonymous Clay said...

I used to *hate* it when my mother's friends, or worse yet, her siblings, made what I considered insipid remarks to me. "Aren't you getting to be a big boy now?", "How do you like school?", "Cat got your tongue?" - stupid things like that. I never answered them, but probably just looked at them with contempt. I was not going to play their game, because I just didn't like their condescending attitude. It was like everything was scripted with them, and no one ever *really* tried to talk with me when I was small.

 
At 7:09 AM, Anonymous Shea said...

Lisa, just wanted to say that I really liked your posts. A pity the Cure Autism advocates cannot see the same way.
I'm an autie too, and some of the things you said about your son really resonates, especially the part about being unable to verbalize things.
The best I can describe it is my mind just trying to pull words out of the blue, getting a particular drop out of an ocean. It just can't latch onto the right one, and that feeling itself can be overloading if experienced for too long.
Anyways, keep up the good work!

Shea

 
At 7:35 AM, Blogger hollywoodjaded said...

Exquisite.

 
At 9:59 AM, Blogger Lisa Jean Collins said...

Anonymous,

I know who you are :). Maybe I will pull all these together and put them out in hard copy someday. If I do, you will be the reason why.

Clay,

So, you mean NTs script, too? Who woulda thought! ;-)

Shea,

"Getting a particular drop out of an ocean." I really like that. I am not very articulate in real life. I can't speak very well when I'm overloaded especially. The higher the level of emotion, the lower my ability to speak. I prefer to write. I could never speak the things I write.

Hollywoodjaded,

Thanks. :)

 
At 11:43 PM, Blogger Phil Schwarz said...

A propos the New Testament verse: I think it was Jerry Newport who observed that God must be autistic, because all the celestial bodies God created *spin*...

 
At 2:15 AM, Blogger Autism Diva said...

Very nice. :-)

 
At 9:43 AM, Blogger Lisa Jean Collins said...

Phil!

Now I know what you look like. :)

I like that observation very much. It cancels out a lot his other, er, observations.

Dustin Hoffman did say that *everyone* was autistic. We are all made in the image of God, so...there you have it.

 
At 9:57 AM, Blogger gail said...

Hi Lisa!

Loved this one! It took me back. As a small child I was confused when people would try to "engage" me. I did not see the purpose of it and I thought they were being rude and intrusive to speak to me "out of the blue", especially if I did not know them.

I understood the purpose of being given directions or told to do things, but conversation was a totally foreign thing and not something I needed or wanted as a small child.

I liked being around people. It was cool to be in the same room while they did their thing and I did mine. I just did not understand when they would interrupt "my thing" to talk about whatever. I did not feel this need and did not know why they were doing this.

My aunt told me when I was a teen that when I was a child and she would try to say "hello" to me, that I would look annoyed and turn my head away. The more she tried to get a response from me the more agitated I got. That sounds about right!

I remember my thinking at the time, "I am leaving you alone, why aren't you leaving me alone? I am not interrupting you!!"

 
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