A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Saturday, December 27, 2014

How Accurate Are Referral Files?

Recently, another blogger contacted me on Facebook, asking if I had any input on a blog post she was working on about the accuracy (or inaccuracy) of referral files from China, because of our experience with Luke.

This sort of opened a can of worms for me, which eventually became this blog post.  Much of this is a C&P of my response to her.


I think PAPs go into adoption with rose colored glasses.  In a sense, you have to, to make the leap of faith that it takes to bring a totally unknown stranger into your home.  If you didn't assume that things were going to be okay, no one would do it.

As for us personally, yes.  We missed things.  Looking back, we can see that Luke wasn't sitting independently in any of his photos.  He was either contained in a chair/stroller or there was a hand holding him up, although one picture showed him standing, leaning against a wall, which was hugely misleading.  Luke has never pulled himself to stand, but can bear weight (sometimes) when placed in a standing position.

Prior to adoption, families are cautioned, "Your new child may react strongly, display strange behaviors, or even shut down at Gotcha Day."  While it's good to have that preparation, it also normalizes *any* behavior from the new child.  When the RQ board was more active, you'd get any number of stories saying, "Our little Wilhelmina was rocking and staring and we were so terrified, but we got home and she just blossomed!  She's funny and smart, and we're so lucky we didn't give in to our fears and leave her in China.  We would have missed out."  I heard over and over, "Her file said she was delayed, but she totally caught up in no time/just needed glasses/gets a little help in school and you'd never know it now!"  Those stories contribute to the idea that it's all going to work out in the end.

It's a rotten catch 22.  If you get to China, and you disrupt because you're afraid there's bigger issues going on, you get roasted alive online because, "How can you know after only one day what progress that traumatized child would make, given the chance?" and then you're accused of ruining their chances of getting adopted by some other family.  If you bring them home and then you're overwhelmed, you get tons of people telling you, "You should have known better!  You knew he was delayed, but you brought him home anyway!"

As for how accurate or not accurate files from China are... well, there's usually not a whole lot to go on.  People have asked if I'm "mad at China" over Luke.  Honestly, no.  I love China.  The country, the people, the culture.  The children of China are beautiful to me, and I love seeing them in blogs and on my Facebook wall.  I left a piece of my heart in China, and I can't wait to take my girls back to visit someday.

Having said that, however, I do feel that communication is an issue.  Was there someone, somewhere along the way that felt like Luke would have a better chance of being adopted if they downplayed his reality?  After we got home, I requested and received quarterly reports from the NGO working with his orphanage.  Had those reports been part of his referral file, we would not have submitted LOI for him.

Let me say that again.  Had we seen those reports prior to the adoption, we would NOT have adopted him.  That's where I get resentful.  The first report shows a very, very sick baby, who looks nothing like the little butterball we saw in the referral pictures.  And *every* single report lists him having CP, which was NOWHERE in his referral file.  We were not approved for CP in our homestudy, and we would not have pursued him, had we had that info.

Luke doesn't have CP, but that's beside the point.  The point is that THERE WERE PEOPLE WHO KNEW that he was not typically developing.  And we didn't get that information.

Some people attribute sinister motives to that, saying, "They wanted him to get adopted so they wouldn't have to pay to take care of him forever."  Some people attribute altruistic motives to that, saying, "They wanted him to get adopted so he'd have a better chance with therapies he couldn't get in China."  It doesn't really matter.  The reality is that NGOs often don't share their info with PAPs prior to finalization of adoption, because of privacy concerns.  There really should be a system in place for families who are in process to get that information.  Luke should have been adopted by a family fully aware of his limitations and prepared to make him their lifetime project.


In summary, referral files vary drastically.  Some are spot on, and others are highly inaccurate.  All of them only tell part of the story.  When considering any special need, you should think of the worst case scenario, and determine whether your family could handle that or not.

When I considered "delays," tacked on to the end of Luke's primary special need (which, ironically, aside from one specialist appointment has been a non issue), I thought "worst case scenario" would be that he'd still be a little behind when he was school age, and would need an IEP to help him get through school with his peers.  Never in my wildest imaginings did I think that "delays" meant he would not walk, speak, or toilet train, and that he would not be in a regular classroom at all.

The long and the short of it is, we took a risk, never really believing, or even suspecting, things would turn out as they have.  Now we serve as a cautionary tale to other prospective adoptive parents.

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18 comments:

  1. Much love to you Shecki. I know this has been so hard for you and you are a strong women. <3

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    1. Thank you. I didn't want to know how strong (or how shallow and selfish) I was. :rueful chuckle:

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  2. I know this has been hard to share, and I appreciate your honesty! You and Luke are loved and prayed for!

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    1. Thank you, Michele. I so appreciate everyone's prayers.

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  3. Thanks for writing this! I find myself in a catch 22 because I don't like posting the icky stuck on my blog about the hard times we go through at home only because some people who read it would accuse me of being mean about my kids, who are great but were at one point traumatized. So that leaves me only showing mostly happy pictures which doesn't show realities at times. As for inaccurate files, our one son had more limb differences and leg problems then noted in his file. Actually, his file made it look like his right leg was normal but after amputation surgery on his left foot, the "nothing wrong" right leg continues to be the problem, delaying prosthetics. Oh and of course the orphanage would deny any abuse accusations about our other son...who completely shut down on Sunday after seeing cousins wrestling, thinking he was going to be hurt. Sigh..... Thanks for posting honesty! Your homeschooling posts are great!

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    1. I'm glad you commented; I went and visited your blog. What a lovely family you have! :) It seems like it always takes longer for us to get prosthetics than I expect it to, but once he gets up and going, the memory of the frustration will fade. He's a cutie pie!

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  4. Wow, thank you for sharing your story. I had no idea that countries can lie about the adopted child (or leave out vital information)!

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    1. It varies from country to country, but most adoptive parents will tell you that you need to be prepared for surprises. Not always bad ones; one province in China has a reputation for dxing babies with "heart murmur" that miraculously clears up by the time the parents arrive, allowing healthy baby girls to be adopted through the special needs program.

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  5. My first daughter's file was accurate with her diagnosis, but not at all about the severity of it. I had very little information about previous surgeries she'd had in China or other illnesses and injuries.

    My second daughter's file must have been completely made up. She was portrayed as having some interests she didn't have and actually detested these things, and she presented herself as though she had significant brain damage (posture, tongue thrust, slouching, fingers in her mouth - at nearly 14) yet she was healthy.

    There was stuff I could figure out by reading between the lines of my third daughter's file, but by then I was more experienced. However, there are still many mysteries especially about her education.

    My baby's file was the most accurate, but so was her condition, though she could have been much more severely affected than she is and it still would have been consistent with what was in her file.

    Some of my children have been abused. That's not going to be in their file. Some have scars from serious injuries on their bodies. Some they remember, most they do not.

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    1. It's really luck of the draw, isn't it? I am surprised there would be past surgeries with no mention at all in the file, though.

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  6. We travelled to adopt a 2 year old whose file was grossly inaccurate. The child was supposed to be grasping, babbling and eating food, but was able to do none of these things. Gross motor development was at about 9 month level, but fine motor and cognitive abilities were at about 12 weeks. My background was helpful, as I could see it wasn't trauma related but genuine lack of those skills. We were afraid of course, but decided we wanted to go ahead, only to find visa eligibility was a hurdle. The process for a waiver included getting more medical assessments done. We got an MRI and saw that about 1/3 of the child's brain was missing/damaged, presumably at birth. There is no way the abilities listed on the file were ever present. Of course our chances at getting a straightforward waiver were now nil. We would have had to relocate to China to care for the child, while continuing to fight our case with the courts in our country. Not being in a position to do this, we had to dissolve the adoption. We didn't get to chose our match, but even on review of the file, it was hard to pick up warning signs with so much fabrication. About the only thing was a clenched fist in an update photo - but we balanced this with all the abilities listed. It was only after travelling we realized those things were not true. We hope that the fabrications were made out of love - someone wanting an adoption to go ahead. But it meant we travelled for a child we could never have brought home, even though that was still our intention. We're so sad that time was wasted for the child, and of course heartbroken that our adoption turned out that way. For countries with health exclusions on visas, the inaccuracy of some files is particularly scary.

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    1. Oh wow. Were you able to get another referral? I'm so sorry. That must have been a really trying experience for your family.

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    2. Yes - we did receive another referral a year later. We adopted a four year old boy with a heart issue and CL/CP. His presence in our family has brought a lot of healing, but obviously it's complicated. Our 4 other kids were all in China (each time). Our hearts long to have both boys home - but of course, that could never be. Losing one son is the reason we were eventually matched with the other. Like I said - complicated. And clearly so much worse for our little boy.

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    3. I can relate, in a way. We had a second trimester pregnancy loss many years ago. It was devastating, but we conceived again, and Josiah was born. If we hadn't lost our other little boy, we wouldn't have Josiah. Complicated is a good word for it.

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  7. Thanks for sharing your story. It is similar to ours but we had a better outcome. There was an NGO in the picture as well which if we had seen their reports, we would have been much better prepared.

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    1. I so wish they were willing to share their info! Even if they just shared it with your agency, and your agency passed on a synopsis, that would be a step in the right direction.

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  8. Shecki,
    I know this has been a hard journey with Luke.
    I also know first hand as well the inaccuracies of a child's file. All 4 of our kiddos from China were not accurate.

    The first was a Cleft kid who we were told could talk but he could not do anything but grunt when we met him. Although, He actually has had the easiest "medical" issues with a couple surgeries, and speech and will need more surgeries. We have had him home 3 years though and we still have major trauma issues. He has the most severe anxiety and fears. We have several reasons to believe he was abused. It has been a sweet, yet difficult road with him.

    Then we went back for the next two, like you at the same time. We had reason to believe that little girl had some other "issue" than was just on her file, but we went with it anyway. Wow..it has been a long and tiresome road with her..the therapies, the constant carrying her and feeding her by hand at almost 5 years old, the continual frustrations she feels which often leads to tantrums that last for 30 min straight. I must hold her during her fits so she doesn't hurt herself or someone else. However, I don't regret adopting her one bit. I am thankful for the ways she has grown and matured and developed and I see a lot of hope for her future. She can now play games, she has a sense of humor that cracks us all up, she smiles (crooked albiet) and even laughs, she is trying to talk sometimes, and she is so smart. But, All that was not on her file : CP, hip injury which presents as dysplasia, severe Ataxia and a genetic disorder (granted, they likely did not know this one) and severely malnourished. She weighed 18 lbs at age 3. I am happy to report that today she weights double that in a year and half being home.

    Then there was our little guy we brought home with little girl. We knew he had heart condition that could lead to potential heart surgeries. yes, there was a surgery that was not in his initial file. we got it months after being matched with him, even though it happend months before the match. But he was very sick when we brought him home. He needed oxygen, he was in heart failure. I am assuming his nannies did not know the extent of his heart issues, but it was shocker nonetheless when our little guy was being faced with death.

    Our last little girl, come home 7 months ago had a very confusing file. We new she had a spinal issue but it was not clear. It seems now from an MRI she had a spinal injury, it is not bifida that the file states at one point. When we read her file we did adopt her in faith, knowing that whatever her condition it would be up to God to work a miracle for her to walk. We could see from her videos and pictures a great strength in her upper body and a sweet, joyful spirit. She does seem to have some big fears of falling so we wonder what happened to her, of course that would not be in her file. She also has a severe lazy eye, that we are still trying to get a good pair of glasses to stay on her face without discomfort.

    So I agree, that all adoptive parents need to take off those rose colored glasses. Even, if your child is perfectly described and seeming to bond well those first few months (our oldest did and seemed more adjusted than he seems now sometimes, after 3 years of being home) it is a process that will take a long time for these kids. These children need constant healing: physically, spiritually and emotionally....I believe the Lord will help us through being a vessel for our kids but it will painful and sacrificial.

    I trust for you to, that your journey, while difficult and hopeless at times, is not without hope. Jesus has a plan and purpose in allowing you to be Luke's mommy.

    Don't beat yourself up so much. You could have given up on Luke but you haven't. You are a good mother and it is hard work.

    I have been getting a massage once or twice a month from a massage school and it has been so wonderful for my tension in my neck and shoulders, carrying my kiddos. Maybe that is something that will help you?

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    1. Thank you. And congratulations on your coming grandson! :)

      I agree with the attachment issues being cyclical. I felt like the girls were doing fine for a few months, and lately I'm seeing things in Katie that make me realize she's not getting everything she needs to make her feel secure.

      I can't even bring myself to make an appointment at the eye doctor, let alone a massage, lol! I only visit the dentist because they call and harass me, and we go in batches.

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