Wednesday, April 27, 2011

Our Wake-Up Call

This is the beginning of the story of our quest for an FASD evaluation for Hope.

Our wake-up call came in the middle of the night several miles in the sky above the Pacific Ocean. The word "call" doesn't quite capture the sound. Think shrieks of terror from an almost-six year old being pursued in her sleep by giant hairy spiders wielding sharp knives. Or something on that order.

Despite the din of the airplane engines,  Hope's night terror was wild enough to have flight crew members hovering in the aisle in teams of three for half an hour as Hope thrashed and screamed. No, they said, they'd never heard of a night terror much less seen one. We we sure there was nothing we could do to wake her up? How long would it go on? People were trying to sleep....

Sigh. It was like a meltdown in a store: a puddle of sobbing liquid toddler on the floor blocking the aisle, shoppers hovering, wondering what manner of child abuse produced this spectacle. Except that several miles up in the sky that night, there was no mopping up the spilled child to make a quick exit and put an end to every one's misery.

Night terrors (a nightmare from which the child cannot be awakened) are not a new thing for Hope. She's had them since we adopted her at six months old. They typically happened at night, but even occasionally during a nap. Nothing we tried completely extinguished them. Night terrors are one way her body responds to over-stimulation --like a play date or a birthday party. We did our best to minimize both. But sometimes for the sake of normalcy for the other girls, we attended a close cousin's birthday party, knowing that night terrors were the price we'd pay.

When we were planning a family trip to Korea last fall --our first trip back as a whole family --we considered that jet lag was likely to mess with Hope's fragile sleep pattern.  She needs a lot of sleep but has a hard time falling asleep and a hard time staying asleep. So I tried to compensate by not over-programming our days in Korea, making it a ten day trip instead of seven and asking Grandma to go with us for extra help.

My overriding concern was how Hope would sleep and therefore how she would behave in Korea. Another sigh. How many ways can pride manifest itself? I hoped we could avoid a scene that might make our Korean friends regret they had matched Hope with our family.

It seemed to work. After we arrived, Hope slept better than I anticipated and we had an amazing trip. Our Korean friends were as charmed by Hope as her preschool teachers had been. It seemed confirmation that our worries were simply borrowing trouble.

Hope and her foster mom, six years after they said goodbye

It was our first major trip away from home with Hope and I had no idea that we'd be coming home to a mega version of an after-preschool meltdown. It started with night terrors on two flights and continued for two months at home.

Hope has always been challenging. When she was three I had began to wonder about the small, but nagging, amount of alcohol her birth mother reported drinking. My best friend, Dorothy, was raising several kids with FASD. Hope's behaviors, while in the same ballpark, just didn't seem as extreme. Like I'd never seen Hope rage. Still, it was sobering to find ourselves in an NHA class where every other family was attending because they had a child diagnosed with RAD, FASD, or both.

However, by God's grace, NHA, with significant modifications, helped us turn a corner in our relationship with Hope. It drew my heart to her heart. Rather than wanting to run away and lock myself in a closet lest I have to interact yet again with our baffling, frustrating third child, I wanted to engage with her and help her.

So by the time we went to Korea, we were managing okay as a family. Some days were still awful. But on the whole, they were so much better than they had been that we were counting our blessings and trying to accept the hard times.

Then God stripped away every illusion that by dint of good parenting we could help Hope. She came home from Korea last October with two jet-lagged parents and three jet-lagged sisters. Forget therapeutic parenting. For a while I was barely capable of accomplishing laundry and dinner. Her sleep reserves were exhausted. Her heart had just been through the emotional wringer of being reunited with her foster mother and meeting Joy's twin sister's adoptive family. ("Mommy, was there no family in Korea who wanted me?")

Overwhelmed by so much more than she could process, Hope vanished. The child who stood in her place raged. Destroyed things. Bit her sisters. Most unnerving, her eyes glazed over sometimes and when they did, her human spark was temporarily eclipsed by something that barred its teeth, growled, drooled and gnashed at people. I never-imagined I'd hear myself saying things like, "When she growls at you, go away. You don't have to let yourself be bitten."

We were in damage containment mode for several weeks until God gave us the presence of mind to add it all up. He was showing us Hope without any supports. Hope at rock-bottom. We felt a surge of gratitude that God had enabled us to get by for so long. But there was no way we could live any longer with the illusion that maybe Hope was just an unusually intense child. God had already led us to parent her like a child with an FASD. Without support, she acted like a child with an FASD.

I wish I could share that it didn't take so much for God to finally wrench us from the pride that kept us from pursuing a diagnosis earlier. It was not just our image of ourselves as parents. The adoption world sends strong messages about honoring first mothers so I also had to move beyond the irrational fear that I was betraying Hope's birth mother by following up on her statement that she had consumed alcohol during the pregnancy. And the secular world's messages about the limitations of FASD are so hopeless, we denied the signs as long as we could rather than find our family on that road.

But our resistance was for naught. God delivered our wake-up call. By the time Hope came back to helself, two months after we returned from Korea, when we might have imagined the homecoming interlude a bad dream, Hope was on a waiting list for the next opening for an FASD evaluation. God in his great mercy, saw to it that we were committed and could not go back.

For the next chapters in this story see the Index of compiled links on FASD and scroll down to "Our Family's Journey with FASD."


dorothy said...'s good that God only reveals things to us when we can bear them - and that often times he has already set our supports into place before we even have a name for what the problem is. I don't see life with FASD's as bleak - it is just very different from much of the world and it is dangerous to hold it up in comparison.

GB's Mom said...

We didn't adopt international, but when GB was 10 months, we saw a pediatric neurologist at our doctors advice. After filling out reams of paper,the doctor took one look at GB's facial features and told me she had been exposed to alcohol prenatally. It had never occurred to me and I was shocked and furious. It was years before I returned to this doctor. GB received all the services she needed, but it was years before I could accept why she needed them.