Sunday, March 16, 2008

Special Needs by Surprise: Denying, Accepting and Owning

As I begin to write this, strong images sift through the memory. For some reason, the first one is of me sitting alone in the waiting room in September 2001, wondering and fearing the results of the diagnostic on my sweet but odd 6 year old from China. . At some level I knew the answer: at another I continued to want to be in denial. After 2 ½ hours, the specialist and assistant came in, cheerfully bearing clipboards, as though it was just another day of data crunching—one more client to go before the end of the day. “Well,” the head of agency began, briskly and efficiently.

It was clear that she was happy that no doubt had been removed. “We just weren’t sure whether to call it autism or asperger’s, because of the issue with whether or not she used her pointer finger to point out things to others. But based on how she interacted with kids in the special school—her lack of understanding of how different they were—we can clearly call it autism.” I must have stared at her, blankly. “High functioning autism,” she added. She may have said more—but the rest was mostly a blur. And the remainder of the day was spent with internal wheels spinning. Inside was a voice saying, “but they said…but they said….”

They had said. I had asked for a healthy child between 10 and 14 months. They got the age part right. They -- the CCAA officials -- had said she was healthy.

“He had said.” I had met the male, aloof orphanage director in Guilin just after my daughter was handed over, at 14 months and 13 pounds. Through a translator, I learned from him that “she probably stares at her fingers because when children scratch themselves too much it is our practice to bind their hands.” I had found this idea barbaric but felt she had plenty of time to recover from such treatment. But in fact, in the photo of my first embrace, I am looking at her face and she is far more interested in exploring the fabric of my blouse with her fingers. And in fact, textures—of carpets especially—were the most entrancing part of adoption for several months to come, as far as she was concerned.

“She had said.” The female director of my agency, who often took trips from my state to her native China to facilitate adoptions—using the opportunity to visit with her parents in the process—was blasé when I expressed my concerns about a baby who refused to give eye contact. “She’ll catch up in two months, three, max,” she said with absolute certainty. What did I know? I told myself. Her agency had already placed several hundred children from China successfully. I agonized over whether to accept the placement. Several factors affected my decision. I was exhausted and confused. The agency director was so certain. I was on my own. Finally, and perhaps most important of all—I knew I could not have lived with myself had I left a needy, half-starved child behind in China. I went ahead with my decision. Later that week, though, other parents looked at me uneasily. And as Josi attempted to crawl on a bed over towards another adoptive infant, the mother came over to snatch her child away. My heart sank, but without a specialist to confer with, I felt I had no choice but to carry on.

I went home to a baby shower, friends expressing congratulations cautiously as Josi chose to stare at the lights overhead. A few years passed. Josi received early intervention from the state. Specialists scratched their heads and cited institutionalization. I found a friend whose adoption had inspired mine. “How long did it take, would you say, before she attached?” Oh, about two days,” she responded. My journey towards that goal, meantime, stretched endlessly. I would hold her and her body remained limp, like a sack of potatoes. She was unresponsive to hugs and kisses. She couldn’t walk and had no language. Over and over, I heard the mantra, “give her time.” Alone in my apartment, I waited—played with her—saw slow results, or none. When I sang and held her, I began to get some eye contact and with bouncing, some laughter. For a long time, I will confess—I was concerned about me, and equally about myself. Why me? I wondered.

I wondered until the day I was invited to a Christmas party for the state early intervention agency and met family after family dealing with retardation, cerebral palsy, epilepsy, and permanent invalidism. My stubborn self-pity remained but began to shrink. These were biological children. The families hadn’t asked for these diagnoses but had to live with them.

When she was two, sick of people telling me she would learn to speak on her own and knowing it was untrue, I finally hit upon an idea. As she was crawling and babbling, I got down on the floor and began imitating her babbles. Slowly, surely, she began to realize that I making a connection. She began to repeat my imitations. There was no miracle of real word formation, but she was starting to get it. A few months after that, I withheld milk, making clear that she had to make a noise with her mouth in order to get it. After some crying, she produced a single syllable that I realized was an effort in the right direction. Within 4 days the syllable was recognizable as “nalk.” With speech therapy at 4 and 5, she began to sound like other kids.

It wasn’t until she entered summer camp, post kindergarten, that I encountered a special ed teacher who hinted at the source of the problems. That’s when I went to a local agency known for the diagnosis of autism and got my results. Josi’s school was surprised to get them and insisted on its own evaluation. The same findings were reported. But the services available were only related to speech and language. They had no social skills groups, and that was the need most apparent to me. Josi could cooperate with others and could learn at her grade level, but was unable to make friends. A diagnosis at 2 or 3 could have made a difference. But then, my child was supposed to be “healthy.”

The years have passed and my daughter is now 12. In many ways Josi has made huge strides. When I tell a few trusted individuals about the diagnosis, they express surprise—“I never would have thought that.” She is in a regular middle school classroom, excels in art, and participated in her school musical. She no longer qualifies for special services. But a boy recently expressed interest in her, while asking “why do you act so funny?” She responded with The Diagnosis—and the friendship faded. I suppose she will always be “seemingly normal”—until poor judgement skills and social awkwardness surface.

In the meantime my own perspective has evolved. . In the first years after diagnosis, my adoption agency would refer potential families to me and I would secretly delight in bashing their services to the hopeful adopters. At one point, I heard, they were sued by a group of families for lack of a formal orientation program dealing with the possibility of special needs in adopted children. The suit was reportedly successful. I belong to a yahoo group that rates agencies and see mine still criticized from time to time.

But the truth is that resentment and even revenge don’t change the fact that life must be lived on a daily basis. Josi’s affection for me, cooperation, and companionship are huge assets in my life I couldn’t do without. Would I wish for a different child? To me, that’s no longer a question to consider. The most important decision points in our life pass in a moment and cannot be reclaimed. We move on. We must decide to be happy by creating new expectations for ourselves when others have given us the wrong ones.

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