Friday, July 23, 2010

Labeling

Don’t label him.

That’s another one of those comments I’ve heard a lot over the years.

Listen to it. When you hear it as often as I have and take some time to fully consider it as I have been lately, it doesn’t sound like advice. It sounds like caution. It takes the form of a directive. And there were times, when I heard it said to me, that it almost sounded like threat — as if well-meaning people were warning me not to “do this” to him.

And so I didn’t. I was afraid to. Afterall, as my pediatrician, the school social worker and my family repeatedly insisted, my son was fine. When he is happy, he is elated. He loves to engage people. He hugs everyone. His smile warms a room. He’s incredibly intelligent. And while there are times when he is obviously frustrated and clearly struggles socially, to casual and at times even to professional observers, there just didn’t seem to be anything diagnosable about him.

For eight years, I heeded this direction, or at least, I wavered. I did not use the A-word to describe him. I used plenty of other words. At the beginning of each school year, I’d seek out his teacher for a face-to-face conversation and try to prepare her the best I could. I’d say my son is a real individual. He’s high-spirited. He’s sensitive. He’s quirky. Understand? And I'd hold her eye-contact as long as I could for added emphasis, so she’d see this was a plea, please hear what I was conveying.

I did not confess what I was growing to know — that the cluster of seemingly unrelated behaviors, sensitivities and symptoms I had struggled to understand were consistently leading me to resources and websites that deal with Autism. We had accepted Sensory Integration Disorder. I had long ago adjusted his diet and he was thriving on it. He no longer qualified for speech, OT or other services at school. And he was doing fine academically.

So why would I label him now?

Because labels came anyway. Not from me. And not just from the innocent immaturity of children, which of course was a source of plenty. But they also came from adults, from friends, even from the staff at his school. I understood of course how frustrating the situations they encountered could be. I understood they were seeking some sort of way to resolve how they were feeling, that they be grasping with a way to explain their unusual engagement with this strangely quirky child. But none of them would look at him with the compassion that I did ... that he deserved.

He was called inappropriate, disruptive, weird and a freak.

So, I did it. I labeled him. I finally secured a diagnosis of PDD-NOS. I insisted he be reinstated to receive services at school (he attended a special pre-school for a language delay and was recognized as having "sensory issues" but was dropped from services after Kindergarten) that will begin next school year. And I have already begun to tell his teachers, coaches, my friends, that he is on the Autism Spectrum. This label gives me the authority I need to help him, gives his teachers access to resources and information and for him, ensures the compassion and social support that is so vital if he is to successfully navigate his mainstream school. And so far this label has worked marvelously for him. I have high hopes that next year, while he may be pointed out as being autistic, he won’t be so easily socially ostracized again.

This blog is part of my label acceptance. I’m slowly coming out with it. But just to explain how shy I’ve been, you should know I am employing pseudonyms. My name is Elizabeth but nobody calls me Liz. C.S. stands for Charming Son and DeDe for Darling Daughter. Still, my stories here are real and I am seeking, not only silver linings but those wonderful souls who are the truly understanding sort. And I can only hope that sharing this will help others like the blogs I’ve discovered and read helped and continue to help me.

Tuesday, July 20, 2010

Summer party meltdown

CS was invited to a birthday party—his first invitation from a classmate for the whole 2nd grade school year. I was thankful. He was thrilled. So of course we would go. We had been to one of this family's birthday parties before a few years earlier and so I had an idea of what to expect at their Mad Scientist themed event for both of their children. In short, their guests would enjoy the the sort of large, half-spontaneous, half-scripted, multi-age chaotic backyard sugar-fueled mayhem that most kids love. But which for us would be a challenge.

It was hot. Had been, all week. We’ve had a very unseasonably warm New England summer that has had us all melting, but especially my alternately sensory seeking and overly sensitive son. And we had our Uncle visiting. Whatever we could muster for a summertime routine was a-kilter already. And to make matters worse, my husband was traveling, something that always set my son on edge and prone to toppling. He was expected to return that day, but it wouldn’t be until after the party had already started. Knowing all this, I went anyway.

Should I have just stayed home? Stayed away? Was this my fault? Of course it was, because it is my role to predict and protect against such things. But I did it. I accepted the invitation hungrily and took my son to a classmate's birthday party.

And then, when we arrived, we encountered what would be a major problem — water guns. Refreshing to most on a sweltering summer midday— but CS was dressed in clothes. Unless he is specifically in his swimming trunks and sun shirt, he hates to get wet.

He got squirted as soon as he arrived, ironically enough by the highly-functioning autistic older brother of his classroom friend and protector. What followed was mild meltdown number 1. He ran away. I followed. We sat on a rock for a while. We took a few deep breathes. I tried my best to explain and console him and eventually we returned to the party. I thought we’d at least stick it out through the science presentation that was about to begin.

I was able to lure him to stay beside me. Throughout the presentation, that’s where he stayed, up on the deck and away from the smoking dry ice, pop rocks and all the other children.

And as they were seated for the demonstrations, the once hectic yard settled down for a bit. CS quieted and grew brave. I suggested he join the seated audience. He loved science. It seemed the perfect situation where he could engage. But he, beside the treehouse, saw a favorite pastime honestly much more appropriate for just such a situation — a swing. It was actually good how he recognized and acted on what he truly needed to negotiate what he was feeling.

I was relieved. At least he was in the yard in the same vicinity as the other kids. They were doing their thing, launching soda bottles with the pressure from expanding gas, and he was watching from a safe distance, swinging. Swinging. Calming his over-stimulated nerves the best way he could.

But then, out came a water gun again. And this kid, being perfectly friendly, engaging in the friendly way most boys do, shot CS straight in the chest with a soaking spray. CS screamed. He ran away. And I ran after him. Medium meltdown number 2.

A dear young boy from his class who knew him better, tried to help CS and this boy, step into the misunderstanding (thank you, thank you). Together we tried to explain, they to CS that it was meant in fun and I to them that CS just doesn’t like getting wet when he is dressed. And I think we arrived at an understanding we could all appreciate, right there in the field. CS recovered, rather quickly really. I was encouraged. I was impressed. But I was also preparing to leave. I went to get my phone to call the visiting Uncle and ask him to come early and pick us up, immediately. Unfortunately, he had my get away car.

But before I even dialed the phone, I heard my son scream again and not the sound of anger, this was the spine chilling sound a mother fears—the sound of a child, my child, in peril. There he was, mid fall with one leg on the tree house platform and the other dangling through the open trap door of the tree house floor. A mother was straining, trying to push him back up and keep him from falling further, reducing the strain on his groin and hips. Thank goodness for her.

I dropped the phone. I dropped everything and ran. I climbed the rope ladder in my long skirt quicker than I thought I could. I practically catapulted him up onto the tree house deck and scrambled into position so I could hold him and press him tight to my chest and against my body. It is a position — part soothing hug, part wresting hold — that I’ve employed since he was an infant, but he’s so much larger now. He’s eight after all.

He was bleeding. This frightens him terribly. As soon as he realized it, when he saw the red staining my white shirt, he began shaking repeating over and over, “Its blood Mama, Am I bleeding? Am I bleeding? Am I bleeding?”

Of course I know how very much these little scrapes and boyish bruises are magnified against his nerves. How incredibly they honestly do hurt him. And I suppose I have grown accustomed to the frightening intensity of his screams. But the other mothers there, I’m sure they have rarely witnessed such things.

One offered an ice pack. Another brought a band-aid. And unfortunately, as the father arrived with the goodie bag, CS was a screaming fury declaring as loud as he could how much he hated Allie’s party and that he would never come there again.

I carried him, prepared to walk the distance home because now I was ready, after major meltdown number 3, to run away and have one of my own. Thankfully my husband arrived just as we made it out the driveway. One look at us, me lumbering under the weight of my 60-pound son cradled in the oh-so-familiar position, my blood stained shirt and the look of defeat on my face, that the party had been a disaster for CS. And, as kind as everyone was and before CS's loud and angry declaration, I sincerely doubt we will ever be back at Allie’s house ever again.

So, I’m looking — where is the silver lining in this? And I suppose my take away is, in this difficult year, when I’ve struggled to get him on track, to secure the understanding and help he needs, to get him into therapies — perhaps it really was best that we hadn’t been invited to other parties. Maybe next year. Maybe.

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