Thursday, December 29, 2011

But You Don't Hear Me, Though

Let me lead by sharing the good news - Geri's surgery was a rousing success! Dr. B said before the operation that he didn't think he'd be able to find her natural drainage in the right eye, because with all the swelling and distortion the eye's anatomy gets messed up and the microscopic structures are nearly lost. Well, he found and cleared about 75% of it! In today's post-op he was startled to find that she could definitely see him from that same right eye. He moved towards her and when she tried to get away from him he started back and said "She can see me!"

Which is what I told him at the pre-op. Tonight, reflecting on our experiences so far, Nick and I have come to the realization that no one believes anything we tell them about our daughter. They are not used to a child in her situation, and they don't really hear us.

Before the surgery, we explained in detail to the pre-op nurses that we needed to be there with our daughter as she awoke from the anesthesia. "Oh sure, as soon as she starts moving someone will come and get you. No problem," they told us. The message apparently didn't get through to the post-op nurses, though, because they didn't come and get us until she had fully roused and tried to rip the bandages off her face and her arms had been boarded. By the time I finally got to her, she was beyond terrified.

"Oh, kids always get scared coming out of anesthesia," the nurse tells me with a sympathetic smile. We couldn't make them understand that this isn't the kids you "always" see. The kids you always see have at least one loving person in their lives and are confident that, if they are in need, someone will come. My daughter knew nothing but neglect and possibly abuse before six weeks ago. The kids you always see are familiar with the English language. My daughter has no clue what you are saying to her. Most kids can talk to you, tell you how they feel, express their pain or fear. My daughter never learned to speak and has only recently started crying at all when scared or hurt. The only familiar thing she has at all is us. You have no idea how much of a life preserver we are for her. She is just starting to understand that, if mom or dad are there, we will take care of her. If we are not present, she has no idea what to expect. Oh, you're a nurse? Yeah, so were the ladies at the orphanage who rendered her utterly terrified of bathing and of having her shirt removed. The title "nurse" means something entirely less Florence Nightingale for her than for another kid.

Similarly, Dr. B (who is a fantastic doctor, I don't mean any of this disparagingly) heard us telling him that she could see and seemed to think we were nuts or imaginative. It didn't jive with what he was seeing in his office - a child who was almost entirely non-responsive to all the toys and flashing lights. We couldn't seem to make him understand that the child he sees in his office is not the child we see at home. Our daughter shuts down in new or different places. She's been going to church with us for 5 weeks now and no one has heard her speak at church. They have never seen her walk. She will not even attempt to vocalize, walk, or eat in an unfamiliar or scary place. She has eaten in a restaurant only a few times, and almost all of those times were in our favorite pizza joint where they know us and we treat it like our own house. The other time was in a nearly empty McDonald's play area. In short, when you start trying to prod her and shine lights in her eyes, she shuts down. She becomes almost entirely unresponsive. Oh and by the time you came in to start looking her over, your nurse has already come in and pissed her off and put her in shut-down mode.

All this makes me think two things. First, it makes me so grateful for her pediatrician, who has 14 years of experience working with internationally adopted kids. If you are adopting, do yourself a favor and find a primary care physician for your child who has seen other adopted kids. You won't realize it until a little down the road, but it's the only way for your child to get comprehensive and complete care.

The other thing is that perhaps medical professionals working in pediatrics should be getting some sort of training in this area. Even if it's just a brief seminar to help them understand what they're dealing with. Why it isn't totally bizarre for the parents to have almost no medical history. Why you should expect this kid to have major emotional meltdowns at things that other kids could easily handle. Why this kid might act way younger than their chronological age. A general understanding of the situation from which this kid is likely coming. Why you need to move slower, watch for nonverbal cues, and keep this child with their parents even more vigilantly than with the other children.

If nothing else, they need to listen to the parents and take their input very seriously. No, I'm not a hover-parent, being overprotective. No, my requests are not silly anxiety. No, I'm not exaggerating.

My kid is not the kid next door.

1 comment:

  1. Amen to that! I feel the same way about Rex and his medical/developmental service providers.