Repaired Special Needs
I am again seeing children with repaired special needs being referred to parents who are in the non-special-needs program. This cropped up last year and then seemed to fade away, but now it seems to be making a comeback.
So far these include things like heart surgeries, and extra digits (toes, fingers) that have been removed.
It can also include a repaired cleft, which to me is a bit scary for a family expecting NSN since children can require multiple surgeries for this until their faces stop growing and changing. Also, children who have cleft issues can have problems with other organs in their bodies. The same “issue” in utero that causes the cleft can also make some of the internal organs not develop properly and some parents who adopt a waiting child with a cleft do not know their child has these other problems until they are home with them.
A few agencies are now starting to warn clients of the possibility of being referred a child with a repaired special need so I’m assuming they have heard something from the CCAA that tells them this is will be the new policy.
I would like to see a list of what is acceptable and what will not be acceptable as a repaired SN that moves a child into the NSN category. At this point I doubt such a list exists, but I would hope the agencies could have a conversation with the CCAA about this so that they can begin to prepare their families for the possibilities.
August 13th, 2007 at 12:28 pm
This is really scary to me. With the SN program you can at least tell them what SN you are comfortable with. If they are referring “repaired” SN to the NSN program you don’t have a choice. Just because it is repaired doesn’t mean that it is gone, some SN are indicative of other problems. Sure a NSN can have unknown problems too, I realize that. And if we were referred a repaired SN we would accept the referral I am sure.
I wonder if they are doing this because they are having trouble filling the NSN requests.
August 13th, 2007 at 12:40 pm
RQ–are these “repairs” identified as such in the referral? This is scary, not because I would not want a “repaired” child, but I would need to know, and would prefer the “repair” be done in the US, not in China–which would have led me to seek a SN designation to begin with–if these are not being disclosed we all have a huge problem…
August 13th, 2007 at 12:41 pm
This subject is very frustrating. I do not believe for one minute that China is having problems filling NSN requests. I believe they could go a lot quicker is they wanted to. SN, repaired or not, has its own program and should stay that way. Our agency has close to 200 families waiting for a SN referral. I do not believe there is a shortage of families waiting for a SN child. CCAA just makes no sence at all to me!
August 13th, 2007 at 12:48 pm
The repairs are disclosed on the medical information in the referral packet.
August 13th, 2007 at 12:55 pm
I’d also like to say that I worded and reworded this post to try to say things in the most sensitive way I can. These are children we are talking about and I hate the wording of “repair” but I don’t know any other way to say this in a way that will let families know what is happening.
So, if there is a better way I could have worded something, please be gentle.
August 13th, 2007 at 1:00 pm
Okay, I know there are no guarantees in this process, so I don’t need to hear the “there are no guarantees†argument. But, this is ridiculous. It is one thing for the CCAA to unintentionally refer a SN child to a family requesting a NSN child due to unrevealed or undiagnosed health problems, but it is another thing to refer a SN child to a family requesting a NSN child when the CCAA KNOWS special needs exist or have existed. People can spin this however they like, but this is nothing but good-old-fashioned TRICKERY & DECEPTION.
August 13th, 2007 at 1:22 pm
I don’t often weigh in on the ‘fairness’ discussion as it’s a slippery slope indeed. However, the idea of repaired SN being referred is a tenuous situation at best.
Sure, soem repaired special needs would likely not be a concern for many people, but it may for others. If the CCAA were truly in it for the ‘best of the children’, this seems like an idea/option that would best be eliminated or modified so that an interacted with the prospective parents were possible. Or better yet, create a 3rd track for repaired SN’s and do it the same as the SN program.
I have friends, known them for 10 years, their 3rd Chinese adoption was for a known SN, it was their first and will be their last foray into SN’s. they opted for Cleft Pallet and 3 years later finally received the diagnosis that along with Cleft Pallet came a very serious genetic disorder, that is only seen with Cleft Pallets.
The comment that sometimes one SN is indicative of more serious issues is likely accurate, it’s not always as simple as a ‘quick repair’.
I find this frightening to the point of concern over the program as a whole… we opted out of Russia for this very reason.
August 13th, 2007 at 1:22 pm
Seems to me the agencies should be the ones who are telling the CCAA that this is unacceptable - but of course they won’t.
So all of a sudden, China has no children available for adoption, but strangely enough has SN children coming out their ears…what a corrupt country.
August 13th, 2007 at 1:29 pm
I’ve said it before, and I’ll say it again. It’s way past time for the State Department to step in and make some serious inquiries into the integrity of the program.
August 13th, 2007 at 1:32 pm
Our agengy told this to us in march 2005, when we were collecting paperwork for China. Because we are adopting a child age 2+. They said: it happens, be aware of it. The CCAA does not see those children as SN any more.
Is CCAA reffering ‘younger’ children with this issue?
August 13th, 2007 at 1:34 pm
I realize that some people may take offense to this and I prefer not to be slammed, but I want to know (and I’m guessing others do too) as this may affect whether or not we continue with the process or do a (second) concurrent adoption. What happens if the parents are referred a “repaired” special needs child and don’t want to accept it? Will another referral be given and/or will this child be referred again as SN or NSN.
August 13th, 2007 at 1:38 pm
The insinuation is that the CCAA no longer views these children as SN and they will not give another referral if you turn it down.
I would imagine that this will not be a cut and dried thing, and that if you had the appropriate doctors writing out reasons that this child is SN and had your agency going to bat for you that you may get another referral. But I don’t know that for sure, just a guess.
August 13th, 2007 at 1:43 pm
mom2b22: When this happened last year, I got the impression that the families could definitely decline this type of referral and expect another one. They all accepted (at least the ones I know of) so we don’t know for sure what would have happened. However, if CCAA is changing their definition of SN, then perhaps getting a second referral won’t be guaranteed.
August 13th, 2007 at 1:52 pm
What upsets me the most about this new manipulation by CCAA is that IT IS NOT IN THE BEST INTEREST OF THE CHILDREN to knowingly refer a SN child to a family who specifically requested a NSN child. Some people are not equipped, for whatever reason, to parent a SN child. It doesn’t make them bad parents, just honest and realistic parents. Some people have insurance that will not cover a pre-existing condition of which they had knowledge. There will be parents who will have no realistic option but to decline a referral of a child with a “repaired” special need. There will be parents who will have waited for 3 to 4 years to learn at the 11th hour that they have been referred a child that they may not be able to accept. The emotional fall-out from this has the potential to be devastating.
August 13th, 2007 at 1:57 pm
thanks RQ for letting us know about new happenings - it is really, really appreciated!
This topic makes me angry only because it is very, very deceitful in my opinion. I have been holding on for a long time, always thinking positive where CCAA is concerned, trying to hold on to my optimism of this program and I’ve been doing well so far. But this is way beyond my scope of justification. A special need is a special need repaired or not. The thought that the CCAA would feel that they could refer out a non-requested SN with no recourse for the AP is unacceptable!!!
We have no way of knowing (with the small amount of med information we are given) if the SN was corrected completely or not.
There are a ton of SN APs that are waiting and waiting almost as long as the NSN APs. I don’t get the justification of this at all!
I am so angry about this I can not even write out my thoughts!!!!
AT
August 13th, 2007 at 1:57 pm
I have been watching this site for a long time, but this is the first time I have written.
This is also very worrysome for me. My wife and I considered adopting a NS child, but after speaking with our doctor decided to stay with the NSN program. The doctor actually spent some time explaining the something as simple and easily repaired as a Cleft lip or palate may be simply the tip of the iceberg.
Of course there are no guarantees in life and any child could have a problem. I have a Club foot for example, which was repaired. I know that my wife and I will love any child that we receive, but I am concerned over the added burden that an SN child might bring that we can not afford.
LID 5/22/06
Our Family motto.
“A Promise Made is a Promise Kept”
August 13th, 2007 at 1:58 pm
As a parent to two cleft kiddos, I just want to clarify from a couple posts above (magpiesmom) that not all cleft kiddos have associated syndromes. Its actually a very, very low incidence. If a cleft palate occurs alone, as opposed with cleft lip, there is a much higher chance its a syndrome. If you have your referral evaluated by a specialist that would be explained. Our children are normal healthy kiddos. Yes we had surgery, but it was a one night hospital stay and a great recovery just days later. I understand why some might not be open to a SN child for whatever reason-no judgment here. But please dont spread misconceptions about the specific medical conditions these children suffer from that might scare off potential parents.
August 13th, 2007 at 2:06 pm
Someone that I know through our local group came home with a waiting child with a cleft lip. The child also has a kidney that is not formed correctly and may eventually need to be taken out, and a few other organs on that side of her body that aren’t formed correctly, including that side of her heart. The family did not know about anything except the lip and palate until they returned home and the doctor started running tests.
If I’m spreading a misconception then I apologize, but I know of a couple of other kids adopted as waiting children with cleft issues who came home and their parents later found out about problems with their organs as well. Not that extreme, but several of them have been told to not allow the children to play contact sports since they can’t afford to lose the one kidney or liver or whatever that is functioning.
August 13th, 2007 at 2:15 pm
With all due respect, its entirely possible to have two non-related birth defects in the same child, especially due to environmental factors, lack of folic acid, etc. With straight cleft lip and palate, medical research shows few other complications and great recovery. There are cleft cases that result in sydromes, but there are usually tell-tale signs…isolated cleft palate, tags of skin, cysts in eyes..etc.
I just believe that medical research is a better indicator for the prognosis of cleft issues rather than “my neighbor”, “my friend” “someone in my church” examples. I belong to several cleft groups, and I can recall very few incidents where the kids are anything but normal after surgery.
August 13th, 2007 at 2:17 pm
Again, I am not advocating that anyone run out and adopt a cleft kid, I just want to make sure if we are going to discuss this condition we stick to facts backed by medical evidence.
August 13th, 2007 at 2:19 pm
Does anyone else feel like this whole program may be in a downward spiral? I just don’t think that the best interests of the children are being considered at all. How can it be a good idea to match children with parents whose paperwork could possibly be 3 years old and how can the children benefit from being referred to a family who may not know how to properly care for their special needs if any?
August 13th, 2007 at 2:20 pm
I don’t think your spreading a misconception. Children with one physical disability often present with more later or with a learning disability, etc., and I speak from 20 years working with SN children and adults. Sometimes people who want to encourage the adoption of SN kids don’t like to hear that, or will say it isn’t true for them. It may not be true for them, but it certainly is true sometimes, although I understand the good heart behind it parents have a right to know all sides of the issue.
It would seem to me almost against the Hague that China would refer a NSN child to a family who isn’t approved for one in their HS. Does anyone know if that can enter into it?
wBw
August 13th, 2007 at 2:21 pm
I agree with breezy. I will be adopting a c/p child (waiting LOA), and realize that there could be additional problems that surface later on, but most of the children adopted are otherwise healthy. That could happen with a child that was referrred as NSN as well. Sometimes things aren’t diagnosed until much later, but just because a child has a cl/p or c/p does not mean that they are going to have many problems later on. Some do, yes, but many do not.
Also, on my agencies SN list, children with repaired conditions (c/l, heart defect, etc.) are still listed and still considered SN. Maybe that is not true elsewhere.
August 13th, 2007 at 2:21 pm
I guess my first post failed. With respect, its possible esp considering environmental factors, and poor care of birthmothers, to have multiple, non-related birth defects in the same child. The medical research is clear that the vast majority of kids have normal lives. Cleft syndromes are usually identifiable at referral if the family seeks an evaluation from an appropriate specialist. The most common occur with an isolated cleft palate.
While I appreciate the stories from friends and neighbors, its alarming to paint a bad picture for these kids based on these reports when medical evidence indicates otherwise. Wide Smiles is a great website to check out for more cleft info.
August 13th, 2007 at 2:21 pm
What next?! I can’t imagine being in this line for 3-4 years waiting for a NSN child and then being referred what is actually SN, and then being told I cannot get another referral. I’m guessing the reason the China program was so attractive to so many of us was because in the vast majority of cases, if you requested a NSN child, that’s what you got. This is just scary and concerning and angering.
August 13th, 2007 at 2:27 pm
This can definitely be a difficult situation for all involved. We are actually on our agency’s list to adopt a SN child… We filled out the medical checklist and all… and had to have our social worker sign off on it. In order for her to do that she asked that we contact our insurance company (to verify that pre-existing conditions are ok, and to check on the deductible and over-all cost of some treatments). She also asked us to speak to some specialists (for the needs we were checking “yes” to). Our agency even states that 15% of these children will have more than one special need. We’ve already started lining up specialists even though we probably won’t receive a referral for several months. For someone who would have done none of this research and preparation, being referred a SN child, when a NSN child was requested, would most likely be very challenging.
I have met several of the CCAA reps… and they really do appear to care about these children and the APs… so I’m not sure why they would do this. Besides, like almostthere1 commented… there are plenty of people that would like to adopt a SN child - “repaired” or not. I guess only time will tell what’s going on here…
August 13th, 2007 at 2:27 pm
I think post-operative repair of a birth defect is the way the CCAA usually words it and it does sound nicer and more realistic. There is a gorgeous baby boy on one list with two post-op repaired club feet, otherwise he is healthy. So, the birth defect is no longer an issue. He is a healthy child and I cannot figure out why he is on a WC list. The truth is you can be referred a NSN child that appears healthy and thriving, then return home to a terrible diagnosis. With a post-op repair of a defect then you can do some homework into possible issues related to that birth defect. Most cleft palate/lip children do not have any other associated syndromes. Many heart condiitions only hav eto be operated on one time or heal on their own. Ma nyof us were borh with such conditions and do not even know we have it. We are healthy. I can see where China is coming from on this. They are thinking, “The defect is repaired. Now the child is healthy.” They do not see them as defective or sick. So I do not believe they are being deceitful. There are just no guarantees with adoption or birth.
August 13th, 2007 at 2:28 pm
In response to Breezy’s comments,
While I appreciate that many SN kids have normal, happy lives, to me it is a totally different concept to, as a parent, have the time to research a special need, talk to other parents of children with similar SN, talk to medical specialists, etc. — which you can do when you are adopting a SN child from WC list. You, as a parent, have made a choice.
With NSN referral there is a huge push to return acceptance or else you are holding up the whole group. So, having expected a NSN referral, and receiving a SN referral, you will be blindsided and suddenly have to go out and inform yourself and find resources? All within the 48 hour turn around time? In this case, the decision is being thrust upon you.
The Waiting Child program works with different reviews and time frams for a good reason.
August 13th, 2007 at 2:29 pm
Breezy is more experienced than me as we are still waiting on PA, but all of the research we did including but not limited to speaking to Doctors led us to believe cleft lip and palate accompanied by a syndrome or other problems is extremely rare. To my understanding, the only exception is when cleft palate is not accompanied by cleft lip. In the time I’ve been on the Yahoo cleft list and in searching the archives, I’ve seen only a few kids mentioned with any kind of syndrome. It’s unfortunate this blog post focused so much on the personal experience of the author.
August 13th, 2007 at 2:29 pm
Very well put, Autumnb!
August 13th, 2007 at 2:31 pm
Wow, I feel so out of the loop. I’ve been in the China adoption arena since 2003, and this is the first I’ve heard of the CCAA referring children with medically corrected conditions as NSN children. I find myself feeling quite uneasy about it, since we have adopted both a NSN daughter and a SN son already. We have years and years of surgeries/medical issues with our son, and we knew we were in for the long haul with him when we adopted him. We’re requesting a NSN child this time, and I hadn’t considered the CCAA would knowingly refer a child with a past medical history worthy of having been called SN at one time. I’m very curious how this will unfold over the coming months and years.
Do we have any idea what percentage of referrals might be in this category?
P&J
August 13th, 2007 at 2:34 pm
I think it is definitely crossing the line of fairness to refer a child with a special need for which a surgery has occurred IF there is any significant risk of significant future needs because of the treated issue with the child.
Going in, China had these things defined, we all agreed as appropriate for either category, and began our waits. To refuse to provide a second referral for a family due to not accepting a post surgery referral of what would have been a waiting child in the past if they NEVER agreed to be open to it and were allowed this choice, by China when they were logged in. I would hope that China allows for and accepts this.
If this is any indication of future trends in the program, agencies will need to do a MUCH better job at educating families on the more common special needs than they do now, in my opinion. Its in no one’s interest for parents to unwittingly be put in the position of choosing to accept a condition which they do not fully understand and did not agree up front to accept. With 24-72 hour referral acceptance being typically expected, they will not have time to do the sort of soul searching appropriate for making this choice.
August 13th, 2007 at 2:38 pm
I think if the CCAA wants to encourage more families to consider SN thats a good thing, but its the way they are going about doing it that is unfair to both children and families. It would not be in the best interest of the child to force a SN child on a family not prepared to meet those needs. I think it would be different if CCAA referred a child with a repaired SN, but made it an option. I think many families would research that need and go forward with the adoption, and those that didnt I would hope would be referred another child. There has to be a happy medium in there…a better way to encourage more SN adoptions but still giving families a choice.
August 13th, 2007 at 2:40 pm
I know many (most) of you here disagree with me but I’m going to post my opinion anyway. MHO is that a child with a repaired or very minor condition should be welcomed by any family.
I do not believe that the CCAA would knowingly place a child with unrepaired or more serious special needs into the NSN program. But why should a child with a mole or birthmark be considered special needs? That is crazy to me. And I have seen those kids on WC lists.
Of course there is the possibility that an identified minor SN could turn into something more. And an infant deemed “healthy” and adopted at age 9-10 months could develop HUGE issues too.
The CCAA should provide a list of “problems” kids could have and still be in the NSN referral track. Then there would be no surprises for families who are waiting. But if prospective parents are looking for the “perfect” child, they are in for a long ride.
August 13th, 2007 at 2:41 pm
I don’t like this, don’t like it one bit.
During this wait, we’ve looked at fees possibly changing, changing time frames, etc, and we’ve all adjusted and moved on. We’ve even seen thru certain blogs that the CCAA is less flexible on what you can say is a SN now, if you feel that something is wrong. And we’ve all stayed “in line”, knowing that, accepting that additional facet of this unknown wait.
But, this first off, is not good for the children. We have all, I think, thought deeply in depth as to what we can and cannot do, what we feel up to being able to handle. And I know it’s true that you can usually handle a lot more than you think you can. But to take a child that has been abandoned and in an orphanage, and put them with a family that is now terrified if they can handle the child’s needs, that’s just wrong.
And, I followed the rules, I played by them to the letter, to get into this wait for H. My husband and I decided that, as first time parents, we were not up to caring for a SN child. We admitted this. Next time, we may change our minds. I’m sure, if we were referred such a child, we would go thru with the adoption, but it would be because 70% we would feel that we are a lot more prepared than we were 2 years ago, and 30% that we would feel like we had no other choice if we want to be parents.
There are so many people ready and willing to take on SNs. I hope I am one of those people someday. The SN kids can all get homes, there are enough people waiting for them. Homes that are prepared to help them in life…
This is so sad on so many levels.
August 13th, 2007 at 2:44 pm
hate to bring up the money side of things, we are prepared to go with an sn adoption, but we also know going in what money we will need for co-pays and deductibles….we already have an sn child and have had to turn down job offers based on the insurance coverage……our children have to have high option plans so that we can go to the specialists that we want. Many plans will not cover out-of-network providers…..
August 13th, 2007 at 2:54 pm
If the child is no longer classified as special needs, then perhaps it’s because the repair surgeries are complete. For example, a cleft LIP only needs one surgery, as does VSD surgery. Once it’s done, there is no longer a special need. As for extra digits, yes, there is a higher chance of anomaly with MULTIPLE extra digits, like if they are on the both the hands and the feet, but this is rare, and extremely uncommon with one or two extra digits.
Most importantly, we should all ask ourselves this: What is my seemingly healthy child has something unknown near or far down the line? Am I willing to take this risk? If the answer is no, then you may be in for a shock. Children all over the world can seem healthy one day and have devastating injuries or illness or anomalies the next day. Our children coming from orphanage settings likely have emotional traumas, too, that will manifest continually throughout life. Are you ready for that? Has you agency done anything to prepare you for that?
This isn’t shopping at a convenience store where “damaged” merchandise can be returned. These are human children with human frailties just like all of us. What about your own health? What are you doing to minimize your own risk of heart disease, diabetes and other highly preventable health risks?
Don’t anyone flame me, this is my opinion, after all. My point is that no one is perfect and there are no guarantees. Parenthood is LOADED with risks.
August 13th, 2007 at 3:00 pm
Well I’ve gotta admit that this discussion has got my blood boiling. As RQ mentioned, these are actual children we are talking about here, not purely “Special Needs”. I personally don’t appreciate people saying that the China program is in a “downward spiral” when it is in regards to children with some type of medical need.
China is one of the only IA programs that has historically separated its program into two streams so distinctly. With a lot of other programs, whether you choose the child or are matched directly, some of the kids have minor, correctable medical needs. In addition, what is being discussed here are minor repaired medical needs - things which in my opinion are not what we think of as “special needs” in North America. There are a lot of bio kids out there with a VSD or ASD and you would never know it — their parents do not refer to their child as having a ’special need’.
I know the argument here is ‘this is not what I signed up for’ but I feel compelled to say that a child referred through the NSN program could have a minor medical issue later on (we don’t have any genetic information from birth family, after all). People give birth to children with minor medical needs. And other IA programs only have a special needs program for more complicated medical needs, and the ‘mainstream’ program (for lack of a better term) involves some kids with minor, corrected medical needs.
I guess I say this so that the comments on the board remain sensitive to children with medical needs, parents adopting (or who have adopted) children with medical needs, to parents who have given birth to children with these types of needs and to those of us who have minor medical issues who happen to be on this forum.
Okay, I’m off my soap box! :-)
August 13th, 2007 at 3:00 pm
I agree that it’s time for our countries’ state departments who approve the immigration to look into this. It’s not right. Period.
I hope that the people who have had this happen share their story with the appropriate goverment officials so that something can be done.
While I have many years of waiting ahead of me, I would like this settled as soon as possible. If were in a month or 2 of a referral, I would be on the phone right now with my agency trying to find out what they think.
Unbelievable.
Hann23
August 13th, 2007 at 3:10 pm
autumnp and babyontheway-
I don’t think any of us who are waiting for NSN think that there is a guarantee of a perfectly healthy child. Yes, there is always a chance that there is an undiagnosed SN, or something can happen later in life.
But many of us have done much soul searching on this over time. We chose China because of the relative health of the children, and the fact that we did not have to “choose” (I think Ukraine does, or did, this)…We decided that we would not be comfortable going in as first time parents with a SN referral. I wish I was able to. Do I feel more comfortable now with the notion? Yes, after 2 years more to sit and learn, and we may do that with #2.
But to wait for a NSN, and last minute find out that you need to do a whole heap of research and learn a whole heck of a lot and talk to a whole heck of a lot of doctors to figure out what is needed and how to proceed, and the added unknown, until you have a doctor here truly see the child, that would be a huge level of concern and anxiety…and we are lucky, we don’t have the health insurnace concerns.
The example you tell of, autumnp, that’s the best case scenario. Our agency didn’t even tell us there were SN kids that were like that. Now we know. But, I think that’s the best case scenario.
I hope that we will not have to make such a choice when we get our NSN referral. And I hope that every child that has even potential known health concerns gets a home that is completely confident that they can care for them.
Babyontheway-I don’t think any of us that are concerned with this new information are viewing this as a “convenience store where damaged merchandise can be returned”. We are thinking usually deeply and thoughtfully about what children we can truly care for, and which ones we cannot.
August 13th, 2007 at 3:19 pm
This is really unbelievable! With so many families willingly opening up their hearts and homes to children with special needs, why would CCAA refer these precious children with corrected/repaired medical issues to families who are not prepared/able to handle them…and specifically requested NSN. Every child deserves a home where they will be loved and cared for unconditionally…how is it in the child’s best interest if they are referred to a family that is unprepared for SN posing as NSN? I imagine most families received a difficult referral would feel resentment and this would eventually present itself in the parent/child relationship. I am trying to stay hopeful that we will be referred a NSN child because we do not have the health insurance or resources that could handle a SN child. This is very unsettling for PAP’s and for the children who deserve homes where families are equipped to handle the medical/corrected medical issues.
August 13th, 2007 at 3:20 pm
HakkaMonkey: I appreciate your sensitivity towards anyone involved with “SN”. I am in the process of adopting a “SN” child myself. I think what is upsetting people most is being referred a child that has had surgery to correct a medical problem, and may or may not require additional surgeries for that or other problems, without their knowledge of it. My own daughter was referred out earlier this year as NSN, although it was an oversight, not intentional and the family could not take her because they felt that they did not have the proper resources to care for her at that time. My dh and I knew about her SN and did our research and discussed it for over a week before we made the final decision to adopt. If we were in China and only had a day or two to decide, it would have been much more difficult. So, I can appreciate everyone being upset with this procedure, as it it not fair to the children or the parents to learn of this and only have a day or two to decide.
August 13th, 2007 at 3:20 pm
Thank you HakkaMonkey!!! I couldn’t have said it better! Who would label a child with a repaired VSD or with a cleft lip as “special needs” in the US. I am tired of parents looking for perfection.
If they think the China program is in a downward spiral because of this then I hope they bail because they don’t deserve to be here. What a privilege it is to be a parent to ANY child!
I have a cleft lip and palate child and he has no other syndromes. Do your homework before your post stupid comments about knowing “a family” that has “a child” with other issues because of it. This is very rare and you are possibly scaring families for no reason. So one family has a situation, what about the thousands who haven’t???? Please tell the whole story about clefts.
The number one SN that comes out of China is cleft lip and palate. I would assume that if these kids all had serious issues you would know about it.
Prepare yourself to be a parent to ANY child. Who are you to have a guarantee?
August 13th, 2007 at 3:22 pm
My thought is that China has done this to stop people from trying to switch from NSN to SN just to fast-track. Not saying everyone that switches does it for that reason, but I’m sure some do. And possibly when people switch for that reason, they might try to find the most minor medical issues available and aren’t always truly open to special needs that truly require day-to-day care. Either that, or perhaps China has seen that so many families are willing to adopt children with minor SN that maybe they figure these children can be referred through the NSN program because many families don’t mind minor health issues (after all, how many minor health issues do many of us have?). I don’t know, just my .02. Who knows why China has decided to make *so many* changes at a time when its program is already seen as shaky. I still have my conspiracy theory in the back of my head that it’s yet another way to get people to drop out.
Our daughter had an undiagnosed condition where there is a muscle abnormality and some paralysis in her chin. Our doctor explained that a deformity in that area can possibly affect anything in the midline of the body because all of those organs develop together in the womb. So for one little chin muscle, we had to have her brain, neck, spine, heart, and urogenital system tested. Luckily in our case, the condition was limited to just that muscle, but it was a scary road none the less and expensive to pay for all that testing, even with good insurance.
But, once she was my child, she was my child, and I’d have done anything to get her the care she needed. This will be a big deal for many families, I’m sure. I guess it’s good that at least agencies are starting to prepare clients for this possibility. I hope the rest of the agencies follow suit.
August 13th, 2007 at 3:22 pm
I wonder how they choose which “stream” the post-op kids go into. We have lots of post-op kids on waiting child lists (C/L only, already repaired; repaired heart disease; sero-converted hep-B; already removed extra digits, etc). Why do some end up on waiting child lists and some end up referred as NSN kids?
Renee
August 13th, 2007 at 3:26 pm
The more I read, the more I feel like my wife and I have waited nearly 20 years and just when we feel like we are getting close to parenthood, the rug may be pulled out from under our feet. I am starting to get the feeling that we may have missed the boat.
August 13th, 2007 at 3:32 pm
Wow, more disturbing than the CCAA referring formerly SN children as now NSN is the reaction form so many PAPs. It makes me cringe to read all the negative talk about China –trickery, deception, corruption. What is sounds like is that too many people view a child born with a SN as “damaged goods†– even if the special need has been corrected. How sad – for you and for the children.
Has anyone done any real research into this? Are these formerly SN children being referred to parents who requested ONLY a healthy child, or are they going to families who indicated in their home study that they would be open to a minor, correctable special need? I know many, many families who are on the NSN track do have that line in their home studies, even though they are not actively looking for a SN child. And, has a child with a repaired cleft lip or pallet actually been referred as a NSN child, or is this just a speculation that it COULD happen? From RQ’s post, I got the impression that this is what she fears, not what has happened.
You may have guessed by now that I am the mother of not one, but two children who would, at this time, be considered NSN with SN corrected. My oldest, adopted as NSN, has an inch long scar on her neck from an emergency surgery to drain an infected gland. That is an example of a corrected SN. My youngest, adopted through the SN program had eye surgery in June to correct her droopy eyelids. Honestly, I doubt if anyone would look at either of my girls and say, “I don’t want that child, she is defective.†They are healthy, beautiful, intelligent, loving, sweet babies who happen to carry the physical scars of past conditions. I think this is what the CCAA believes they are offering families who are referred children with corrected SNs – healthy children who happened to have had a physical condition in the past. There is no trickery, deception or corruption here. There are just babies who need homes – babies who have the misfortune of not being physically perfect, which in the eyes of the CCAA still makes them healthy babies. Unfortunately, in the eyes of PAPs, it obviously makes them less than desirable. You can talk all you want about “syndromes†and “other, related special needs†but let’s get real. You have those exact same risks with a NSN baby. I know way too many NSN kids who have turned out to be SNs or corrected SNs. It’s not about worrying about what else might be wrong with the child. It’s about not getting the perfect baby you’ve been dreaming of for so long. I do agree though that it’s probably not in the best interest of the child to be referred to parents so shallow that a physical imperfection – not a SN, but the reminder of that SN – is enough to make them want to refuse to parent an otherwise healthy baby. If this bothers you so much, perhaps it’s time for you to take pull your dossier from China.
August 13th, 2007 at 3:36 pm
sevenofus-
We are not looking for “perfection”…we are looking to be prepared to be able to care for the child that we are referred.
This is not in the best interest of the child to be referred to a family that may not be prepared, and also do not have the monetary/insurance/time requirements that a child with known medical issues may have.
And as to “the worst case” that is being discussed - you have to prepare for the worst, and hope for the best…even in NSNs. The worst case is rare, but it does happen.
And none of us are looking to “return damaged goods” as one poster put it. All of us have put tons of thought into what is right for our families. I should not be made to feel like a bad person because I don’t feel prepared the way you are. I won’t get out of line because I view this differently than you do.
August 13th, 2007 at 3:37 pm
I don’t think people are saying they want out if the CCAA is referring sn children. I think what they are upset about is not being prepared. We have had a lot of time to study our child’s special need. We know what doctors we will see, what medical needs our child will have. I think it would be very hard to find out on gotcha day that our child needed surgery. Not that I would refuse the child……just being prepared is always better. But CCAA is saying repaired…..remember that doesn’t mean surgery…And yes I understand with bio children you do not get a warning..we know first hand…our son was born with sn’s….with no warning we had a life and death situation on our hands and believe me, we got thru it, but was it easy……no. Did our doctors fail us, yes……do we love him?….YES!
August 13th, 2007 at 3:38 pm
The bottom line is, its China’s program. We may not like it, but if this is what they want to do, they will do it. So parents may need to start thinking about what SNs they are prepared to accept and doing some homework. I would have an international adoption specialist lined up to evaluate my referral. I would also insist my agency get an answer on what happens if you turn down a referral. For those who are absolutely not willing to consider a SN referral, it may be time to consider other options rather than sit in line for years. I think you will find that many, if not most, of the SN conditions referred from China are quite manageable. I know for us, it was our lack of education on SN that scared us off at first, but when I really researched it, it was very manageable. It would be a good idea to look at your health ins as far as co-pays and deductibles. Also, if you belong to a group plan, they CANNOT impose a pre-existing condition or waiting period. Adopted children must be treated the same as newborns. The same is true for government health plans. Individual health plans dont get this protection. Just trying to be proactive on this. We can complain all we want, but if China wants this to happen, they will do it, and we have to decide if we want to continue under those conditions.
August 13th, 2007 at 3:39 pm
Maybe I am completely missing the point here but I don’t believe it is about the specific special need (whether that be cleft, digit/limb deficiency). It is about the attempt by the CCAA to slide these poor kids into a family unit that may not be prepared for them.
Don’t forget
- the minimal amount of medical documentation that we actually receive in NSN (not sure of SN) - in some cases we don’t know if the information is correct or not - I know DD #1 was way off as far as what they had supplied to me. Just because the CCAA claims that this child has had his/her SN corrected what exactly does that mean? How do they prove that? Do we take their word for this?
-As someone else mentioned APs requesting SN have TIME to prepare and to research the SN to get specialists in place, They have time to check with their health insurance for available options, etc. I think the same person also mentioned that there is definitely some pressure to get the acceptances back once you receive referral because the whole group is held up if even one AP needs to do additional research that requires extra time!
-Those that do not specifically request NSN are not APPROVED for one - corrected or not.
-It is simply not fair (for lack of a better word) for the child or the AP.
Ok, I need to be done on this.
AT
AT
August 13th, 2007 at 3:41 pm
Maybe I’m missing the point here. I don’t care weather it’s right or wrong of CCAA to put these kids into homes labeled as one thing but really being another. What I’d like to know is how prevalant is this. How many of US (RQ folks) thought you were getting a NSN and then got the referral and were given a child with a birth defect that had been corrected? Is this happening all the time now, or just once in a blue moon or what? Do we have any handle on the numbers or precentages where this is happening? How can I prepare myself if I don’t really understand how likely it is that I need to be prepared?
August 13th, 2007 at 3:50 pm
I do not believe people are upset that they may have a child who unfortunately becomes ill and that they would not want this child. I believe people are upset because the rules keep changing without warning, it is not what we were told when we signed our agreement with our agencies.
This is such a leap of faith when you agree to adopt and to have the rules change midway through the game is not fair to everyone involved especially the children. Each family knows what they are capable or not capable of and they should not be forced to take on more than they may be able to handle emotionally, physically or monetary.
August 13th, 2007 at 3:54 pm
I get so frustrated when I take the time to post, key in the spam word and my post does not show up - grrrr.
I think there is too much focus on Specific SNs and I don’t think that is what this is about.
It is about (imho) China trying to slide SN kids into homes that are most likely not “prepared” to accept them. It is not fair to the children, it is not fair to the PAPs, and it certainly does not help the already somewhat teetering integrity of the China IA program.
Most importantly, it simply is not fair to these kids. Lets face it:
The med documentation we get now for NSN is less than desirable - docs for DD#1 were questionable at best. How would I know if the SN had truly been corrected vs. a botched surgery or something?
I would not be prepared for this - I would have no time to research the sn, no time to line up specialists, no time to potentially change insurance companies if that were even an option.
I am not “approved” for this - SWs do approvals and homestudies for a reason don’t they?
This does NOT make me a bad mom, I know what I can handle and what I might not be able to handle which is why I’ve chosen to go the route I’ve gone with the NSN request. I will not step out of this very long, very excruciating line either as even after all this crap the last 12 months +, I still remain optimistic and my heart is still in China.
The biggest problem I have with this is that it is underhandedness of it all and I am having a very, very difficult time with the CCAA justification of this.
AT
August 13th, 2007 at 3:55 pm
strawberryshortcake and babystepstochina, thanks for what you said. You said exactly what I am feeling, and that is I don’t want to be blindsided right now. I will be a first time parent and I have not researched or considered any repaired SN issues. Let alone checked with my insurance company.
I brought this up in the Dec 05 room because it was part of an agency email I recently got. They gave no percentages but to say that we must prepare ourselves for the possibility of getting a repaired SN like cleft lip/pallet or finger/toe deformity. All they said was that this has happened in the last referral batches so we must prepare ourselves. Although there was no mention in HOW to prepare ourselves.
August 13th, 2007 at 3:57 pm
almostthere1, you also just said what I feel too.
And I will not be made to feel guilty over this.
August 13th, 2007 at 3:59 pm
Adoptingliberty: Just curious - did your agency state they would support you in a request for another referral if you felt you couldn’t handle the specific SN or if you weren’t able to be approved for the SN?
AT
August 13th, 2007 at 3:59 pm
Ugh, lost my post!
Here is what I would do if I was waiting for a referral, and faced with this info.
1. Start researching SN. There are many SN yahoo groups. Waiting Child China is one. Cleft lip and palate is very common, club feet, heart issues, Hep B.
2. Check insurance policy. If its a group policy, by law they cant impose pre-existing cond or waiting periods. Same for govt policies. Indiv policies dont get that protection.
3. Start considering what you can and cannot parent as far as SN. And dont feel guilty. No one should feel pressured to accept a need beyond their abilities to parent. That would be a disaster for everyone.
4. Financially and time off work, what can you afford?
I would make a list of the SN I am open to in case I received a referral, and those SN I simply cannot handle. I would also want my agency to pinpoint the process of turning down a referral if I cant handle the SN.
I’ve had three adoptions now, two of which were SN, and one was to be NSN, but ended up being an undiagnosed heart defect. This is the process I used for each. Hope it helps.
August 13th, 2007 at 4:01 pm
I have sat here for the last ten minutes trying to figure out how to word this and not seem stupid or selfish or just what ever…
On the money issue… I am paying for a NSN child which cost more than a SN child. I just checked with our fee schedule and it says that CCAA fee for NSN children is $985 and that SN children are $705. (This may be one reason why post operative children are no longer considered SN.) As to why the agencies aren’t putting up a fight on this issue I don’t know. I know that NSN children are about $500 more with our agency than SN children. I would personally think it was a breach of contract if I was referred a post-operative child/ former SN child but the agency would probably come back and say the CCAA is not considering them SN and therefore they can charge the higher fee.
Personally I don’t think I could handle a physically SN child, (face it all our children are emotionally SN children) could I handle one that was “repaired”. I don’t know but I can’t help but think that I couldn’t do it. Like others that have already posted the reason we chose China is the fact that they have tried their best to give NSN children to those who request NSN children. But another part of me says what if we get our NSN child home and find out in three or four years she has autism or some other SN that cannot be diagnosed at an early age or without gentic testing. What would be the difference in a post operative SN and a NSN with an undiagnosed condition. I know that I am all over the place with this and maybe the whole question should be do I want to keep my head in the sand about possible problems that my NSN child my have or do I want to be honest with myself and get a child which I know has had problems and may have yet more.
August 13th, 2007 at 4:10 pm
I agree totally with what Hakkamonkey and babyontheway have said.
Could I also ask people to think about how they refer to children with SNs? For example many people have talked about ‘cleft children’ I find this very insensitive - we wouldn’t like our adopted child to be referred to always as ‘adopted son/daughter’ or ‘Chinese son/daughter’ and I think similar consideration should be give to children affected by SNs. One of our children has a cleft lip and palate and HATES to be called a ‘cleft child’ she is a child with a cleft or a cleft affected child or a visibly different child but NOT a cleft child. It might seem like petty semantics to you, but it really affects my daughter and other visibly different children.
Best wishes
Gertiesquidge
DTC 10th August 2007
http://offtochinaoneday.blogspot.com/
August 13th, 2007 at 4:13 pm
almostthere1, no the email did not address a referral refusal. They only said that in the past NSN parents have gotten referrals with repaired cleft lip/pallet and finger/toe deformities. And that they want to prepare families for that possibility. And that if a parent gets a referral like that the coordinator will discuss everything in the medical and describe the picture over the phone.
August 13th, 2007 at 4:21 pm
Wow. This is scary. We did not initially choos AN becaue at the time we were both self-employed and individual health insurance plans do not cover the pre-existing conditions. We were concerned that significant medical expenses could bancrupt us. Since, I have taken a W2 job and now have group insurance, so it should be an issue and we are considering SN now, but have only just started to reseach it.
This is really a terrible thing to do. There can be many reasons why a family cannot handle a SN.
August 13th, 2007 at 4:22 pm
I mean SN not AN. Typing too fast.
August 13th, 2007 at 4:26 pm
sevenofus — It’s just not cricket to call another community member’s comment “stupid”. While we all understand that this is a topic that arouses strong emotions, I think it’s best not to characterize another’s opinions or feelings in that way. I’m sure we would all agree that it’s best to try to keep the discourse civil.
August 13th, 2007 at 4:26 pm
First: I’m sorry AndreaB, but you’re not “buying” a child.
During our first conversation with our adoption agency in the Netherlands(2005) we were told that a child with an operated SN is considered healthy by the CCAA. This is often the case with older children now. And really; I don’t like the term “repaired”. This is not a car we’re talking about. These are children!!! Just my opinion ofcourse, but I’m really shocked by some of the reactions on this thread. Again, we are NOT buying a child!!!
August 13th, 2007 at 4:38 pm
I agree with with what Patientlywaiting said. I did a lot of research before starting this process and a lot of soul searching as to what I wanted and what I thought I could handle - emotionally and financially as a single mom. I have never expected receiving a “perfect” child and my eyes are open to the risks involved. With that said, I chose China because I hoped for a realatively healthy female child, with adoption costs and a timeline that I found reasonable for me. I am angry because the rules/expectations seem to keep changing. Here I am 1.5 years into what I thought would be a 9-11 month wait and am told that many of the things that made me choose China over other places are no longer true. Everything is mysterious, with no real answers that I/we can really believe or count on. It feels too late to start over with another country, and in reality, my heart is in China. What I am left with is an awful feeling of powerlessness that goes beyond the leap of faith we all take when we choose IA.
August 13th, 2007 at 4:40 pm
This is crazy!!! We are in the process of adopting a “repaired” SN child. I reviewed her medical report and requested additional medical info. I took three months to make sure that this child was right for my family and I am a medical professional. There are plenty of people waiting for SN children…I really don’t see the point in placing these children as NSN. It is unfair to everyone. I can’t imagine getting a NSN referral with a repaired SN and having to make a decision quickly and if I decided that I didn’t want to adopt that child, I would’nt be able to adopt. This really makes no sense!!!
August 13th, 2007 at 4:40 pm
I’m seeing alot of people talk about needing to feel prepared, and feeling blindsided and angry at the thought of having a child whose medical condition had been “corrected” (a much better word than “repaired,” as my child is not a used car). I understand how you feel. But I can’t help but point out, as the mother of a 5 year old bio child, that blindsided feeling is a big part of parenting.
I know a mother who wasn’t prepared when her doctor told her that her perfect, minutes-old baby had downs syndrome. She hadn’t done any research. I felt blindsided by my daughter’s strabismus. I became a quick expert. You get through it, but most importantly you get your child through it. This is parenting.
You will incur unexpected costs: emotionally, financially, physically. As many here have pointed out, that NSN child you signed up for will likely come with A LOT of unexpected issues (as all children do). Some will be medical, but none will be completely prepared for. That just-punched-in-the-gut feeling is a part of being a parent, and this is just the beginning. Your love and faith will get you through, and you will get your child through. We signed up for something bigger than China Adoption, we signed up for parenting.
August 13th, 2007 at 4:54 pm
I find it INCREDIBLY short sighted on a post about the few instances where ‘repariable SN’ are referred post repair to NSN request families to lambast me for bringing up a real case of the few instances (again, note the word “few) where one SN can and does lead to more. So i respectfully ask the few posters who did just that to rethink perhaps the irony in the lashing out.
My friends, are not some local yokals who I met in a bar one night. i count very few in my circle of friends, by design, lots of acquantences, but few I hold as true friends. My family and theirs vacation together, spend holidays together and share tears and joy together. I know firsthand their pain, their devastation, the impact to their entire family, from a SN that went from a very tough CLCP situation to an unrepairable diagnosis that leaves them trying to figure out long term care for when they get old, and their 3 children aren’t all out of diapers. It’s a constant worry for them. Quite frankly I don’t know that they will all make it through intact years from now.
Even though they knew they were adopting a child with CLCP, they had no idea how serious the problems and long term situation was. I cannot imagine how would be to find out last minute and be unable to prepare at all for this, and also to not choose it to be right for your family. I was supporting RQ, yes, RQ in stating that sometimes a SN on the surface is not just that alone and can lead to more.
so to Sevenofus who said
“Do your homework before your post stupid comments about knowing “a family†that has “a child†with other issues because of it.”
their experiences, my experiences right along side them for years, is NOT stupid and it’s real life and quite frankly I have as much right to talk about the minor chance of a SN that goes from tough to horrible as all the other people can talk about SN that go from tough to wonderful.
Please remember that each of us, even those who don’t have SN children coming home or already home have real experiences that count and that if all of us educate ourselves on the potential what ifs and we filter with our own glasses, we can build the right famiily for us.
I think bottom line the CCAA should not be doing this as it sets families up for failure down the road, financial (as in people have insurance with preexisting limits) or emotional or otherwise. So sure, it could be a select few or small percentage of those having this happen, but it shouldn’t happen.
August 13th, 2007 at 5:17 pm
Under the new rules in May, if I had heart surgery to correct a condition would I be allowed to adopt? And if not, does anyone see the irony here?
AT
August 13th, 2007 at 5:20 pm
Leaving aside my feelings about this issue for a minute (and how I would feel if the NSN child I am referred is actually SN), I have a question about the ability of China to do this. For example, we are approved for a NSN child. Are they changing the designation of these children so that they can be adopted? Or are parents being asked to have their paperwork changed to have them approved for a SN child? Or are these children being referred to families who are approved for both? I think this makes a big difference.
August 13th, 2007 at 5:20 pm
I can totally see the China program leaning toward a blended SN/NSN program. I seem to remember there was talk at one point of CCAA creating another level of SN… more minor correctable, less life long care.
I wouldn’t be surprised if they changed things so that when you apply for the program, you must also fill out a SN checklist. This would open up people’s eyes to the fact that there are no health guarantees in parenthood…not bio, and not adoption…especially IA.
Being a waiting SN mom, I am probably a little biased about going in knowing that all IA kids are essentially SN. However, I can see the need for families to feel some safety net in requesting NSN.
HOWEVER, there seems to be more and more a sense of entitlement based on wait. I’ve seen a lot of comments like “If I’m waiting for ‘x’ years, I should get a healthy child”. That’s ridiculous. I’ll say it again…All IA kids are essentially SN to some extent…and a perfectly healthy little baby could have markers for more serious issues that won’t show up for years or decades.
I also see a lot of comments that basically paint a picture like all SN kids have underlying syndromes. Even RQ’s blog entry made it sound like most if not all cleft kids have a syndrome. FYI, it’s rare. If I were a parent looking at cleft as a SN to consider, that kind of generalization would have scared me away. What a shame that cleft had to be singled out like that.
I do think everyone, NSN families included, should go in with eyes open to all sorts of complications that could arise. If this is the route we all choose to build our families, then we need to be prepared for some tough roads ahead. Not to say that someone who goes NSN should be prepared for a major need, but I don’t think that it’s not “an outrage” if a repaired heart defect or hernia, or repaired cleft, is in your referral packet.
August 13th, 2007 at 5:25 pm
What I dislike seeing is people telling other parents “the unexpected is a big part of parenting.” To quote some teens and tweens I know, “Like… DUH!” Anyone who wants to become a parent knows there are no guarentees in life. I think what is upsetting people is the idea that with adoption there IS a certain amount of choice … we tell what we can accept, what we are physically and mentally (and financially) willing to handle. Because this isn’t the crapshoot of genetics you can ’stack’ the deck in your favor by saying what known issues you can or can’t accept.
I don’t hear anyone *not* saying that if an unexpected issue came up later that of course they’d rise to the occassion and deal with it. That’s what you do as an adult and parent.
My husband and I have a child born to us who was an unexpected special need…. he is on the autistic spectrum. We chose to go NSN or minor corrected (or correctible) special need because we felt we could handle it and our insurance will back us up. On rough days with my son I hope we get an NSN child because I have never known that experience…
Again, I think what inflames people is the idea that there are so many people out there who *knowingly* sign up for SN, why assign a child to a parent who specifically requested no known special needs?
August 13th, 2007 at 5:43 pm
In the state I live.. I could have adopted a child with varying degrees of special needs through the state for a lot less money. The point of going with China at the time we started this, was that it was straightforward, babies were healthy, etc. I just don’t even know what to think anymore…
August 13th, 2007 at 5:53 pm
RQ….are these isolated incidents? or do you think this is a trend.
This truly is an issue for many. I have a friend that adopted a little boy with a repaired club foot and they have been to speicialist trying to “repair” the repair. China’s medical system is not the same as the US and what the consider repair may not be close to the end of the situation.
I do feel this is bait and switch and I truly hope that the CCAA heres the concerns of parents and at lest allows a decline if the parents request.
What else can happen in this process!!! It just keeps getting worse and worse….the wait, the fees, and now this! I really do see this program coming to an end. Not by CCAA’s choice but by the choice of those parents looking for a stable program to particiapate in.
August 13th, 2007 at 6:07 pm
Okay, some of you are being WAY cruel. There is no need to splam someone you have a difference in opinion with. That my friend is crazy!!!! First of all their are not many people who can love a child that is no theirs. All of us on here have a beautiful heart for children, ALL children. And yes if we birthed a child with a SN we would love for and care for the child as much as a child without. HOWEVER!!!!! When given the option and after considering your finances and emotional capibility, it should be just that, A CHOICE!!! Be nice to each other my goodness. That has upset me more than what China is or is not doing!
August 13th, 2007 at 6:08 pm
Good lord! What will CCAA do next? This makes glad that our family is complete and that we are not adopting again.
August 13th, 2007 at 6:09 pm
Oops, meant to say ‘This makes me glad that our family is complete and that we are not adopting again,”
August 13th, 2007 at 6:12 pm
Our ds is cleft lip/palate all repaired in China. He had excellent surgeries and is a healthy 5 year old. Some people do not notice his cleft lip repair. He has been thoroughly examined here in the US and in China and has nothing else wrong with him. Now, we requested a
SN’s child with a need that we felt we could cope with as a
family by giving him the best education and medical care
available. We were very comfortable with this decision and our ds is very smart. To be honest, I have never heard of anyone else with a cleft child with any other problems.
I do not think any family should be referred a child that they feel they cannot care for in the way a child needs to be.
I have read several families who were referred NSN’s children and unfortunately later found out that they had serious problems. One was a genetic disease, another was diabetic, and the other had a congenital heart problem.
All these parents did not anticipate this, and did not have
the best health insurance. However, it is risk, just like having a baby.
There are more SN’s children being abandoned. Our Director emailed me and said it is very sad, and their floor mainly houses all SN’s children. She is contact via yahoo with all the families who have adopted there. However, they do not make mentally challenged children available for adoption. My Dad’s wife (CHInese) says that if people are aware that foreigners would adopt and take care of their childrens’ special needs then they are more likely to abandon them with the hope that this happens. We do know our ds was very well taken care of by his parents before he was abandoned at a hospital. He needed surgeries and they couldn’t provide for him, this was their only hope for him.
I do know of more families who over the past few years have had real problems with behavior. This was something I had never heard about from China before. One lady I know has a super smart little girl, she is 5, but she has extremely bad problems with aggression. I cannot let my dd around her dd because she lashes out physically. She has had her dd since she was 9 months old. Maybe people didn’t speak about it before, and now they do.
I really do believe that the CCAA will eventually only refer SN’s children like other countries who refer special needs and older children. Maybe this won’t happen for many more years. Who knows? It is so unsettling.
August 13th, 2007 at 6:17 pm
I agree afraine. No need to slam people for their choices and make it sound like they are monsters. Adoption is a choice. The SN and NSN track is a choice. Should people slam others for choosing one country over another? I should hope not. Should people slam others for checking some of the medical needs on the list instead of all? I should hope not. We all have our reasons for our choices. And some of the reasons can be very personal for some.
And thanks for what you said too tlday13. Great comments!
August 13th, 2007 at 6:19 pm
Thanks for your comments afraine. No need to slam people for their choices and make it sound like they are monsters. Adoption is a choice. The SN and NSN track is a choice. Should people slam others for choosing one country over another? I should hope not. Should people slam others for checking some of the medical needs on the list instead of all? I should hope not. We all have our reasons for our choices. And some of the reasons can be very personal for some.
And thanks for what you said too tlday13. Great comments!
August 13th, 2007 at 6:22 pm
I don’t get this whole “being prepared” excuse. You complain about the wait but then say you don’t have time to be prepared. Start reading about special needs. It is very clear here that we are talking about repaired special needs. Everyone sounds as if you are getting a damaged child, like there is such a thing.
No one is asking you to step out of line. My point is that if you are not ready to love a child unconditionally then you truly aren’t ready to parent. Why do you feel that just because you are adopting you get all of these choices. If you would of given birth to any of these children and you “weren’t prepared” what would you have done?
Someone posted that they have waited 20 years for this and now the rug seems to being pulled from under them. What the heck?
August 13th, 2007 at 6:33 pm
A few things come to mind for me. 1) I recall being asked during my home study what types of SNs would be acceptable. I wonder now if this information on what I might have mentioned as acceptable got passed on to China. I ask this because 2) I said I would not mind any facial or limb deformities that are correctable or corrected. At the time it felt like a useless discussion because our agency does not even offer SN as an option. I personally would have to give any KNOWN SNs a lot of thought as I have other children. What I mean is, if the newly adopted child’s needs were such that they required extra time and money… it would be wrong to assume it would not effect them. If a child needs any type of lifetime care, and something happens to my husband and I… I feel it is “unfair” to knowingly do so. All that said, in true Libra fashion I will flip flop and say - I agree that there are no guarantees in life, least of all in parenting. I would find it very hard to open my referral folder and not fall instantly in love and want that child. So the real issue is, what constitutes a SN. Is a small deformity a NEED? I know I personally would find a way to pay for a surgery or 2… But, to some it may mean losing their home. That seems wrong. 3)I have to wonder what adding all the new orphanages is going to do to the types of health issues we will see in the future. 4)Perhaps the best course would be to update the dossiers (which needs to be done anyway, lots can change in 2 years) to include what types of SNs that may need future care and make sure that insurance covers it. Seems easy enough. ha. 5)Lastly, I will play the devil advocate and say… you can’t scream for a speed up and then be finicky about the solutions China comes up with. Seems like the majority want it faster and want a guarantee of some sort.
In the end… I just hope the best for all of China’s children.
j4j
August 13th, 2007 at 6:39 pm
Folks, this is not about SN PAPs versus NSN PAPs. This is not about who loves children more. Why do we have to go there?????? It is pointless. It amazes me beyond description how PAPs in this community turn on each other. We should support each other during difficult times and not get caught up in judging the choices of other PAPs.
This is about the practices and procedures of the CCAA. This is about how the CCAA, through these ever-changing practices, fosters an environment of mistrust and anxiety. It is true that the CCAA can do what they want with their program. It is true there are no guarantees in adoption, parenting, or life. And, I did not sign up for a perfect child or an easy experience or for promises that no one can fulfill. I don’t believe anyone did. However, I signed on many months ago because I believed that China’s IA program was one of INTEGRITY…….an integrity I believe they have lost.
August 13th, 2007 at 6:43 pm
Thank you Shasta!!! Very well put.
August 13th, 2007 at 6:44 pm
I am from a large family and some of my sibling have special needs. It was a hard childhood and at times family life felt dysfunctional. Now I have a wonderful family and two beautiful little girls and life is wonderful. Now I find myself scared to death waiting for our third.
Also wanted to add my husband is an oral surgeon and we would never except cleft lip and pallet. Dh says that there are many other things that could be wrong with the child. This comes from an oral surgeon that has all the info and medical friends that could help us.
August 13th, 2007 at 6:50 pm
OK…so now that we’ve got this information, what should our response be?
1. Stick our heads in the sand and hope for the best; or
2. Step out of line and move on with our lives; or
3. Prepare ourselves - read, read, read - and then do
our best with whatever child we receive.
We’re certainly not going to change CCAA’s thinking, so it seems to me those are our only options. Ranting and railing won’t do a thing. China’s babies…China’s rules.
August 13th, 2007 at 6:52 pm
I think China may be thinking that this could significantly decrease wait times for people. I know MANY people have switched to the sn program. They specify minor, correctable sn and then receive a referral in a couple of months, jumping to the front of the line in turn extending the wait for everyone else. I do fully understand some folks not feeling prepared to accept a repaired sn in a child but there is one good point in this.
We thought about switching to the sn program months ago when a good friend of mine was referred a child with a minor repaired sn. She waited a total of 6 months then switched to sn and received a referral 2 months later. Meanwhile we are going on month 18 with no end in sight. What China is doing, I think, is preventing people who are accepting very minor and/or corrected sn from skipping to the front of the line. I have to admit at times it has angered me to see someone with an ‘07 LID receive a referral for a very minor corrected sn. (yes, I am happy the child has a forever family) But it is frustrating to see all these folks jumping the line when our wait will be 3 years. For those who say….so why don’t you switch to sn too? Well we would if we would receive a minor/corrected sn. We were afraid that our agency could give us a file on a child who did not have such a minor, correctable problem. I don’t think I could ever reject a file once I read it and/or saw a picture. The face would be seared in my mind forever.
This new procedure would ensure people would not be referred such minor/or corrected special needs. They would have to make a decision to get in line in the nsn program (yes, which would include children who have had a problem but has been corrected) or be willing to accept a more severe sn and/or one that has not been corrected and would require hospitalizations, therapies etc..
Jaclyn
August 13th, 2007 at 6:53 pm
I wish to address two posts that obviously have taken offense to my previous post.
HakkaMonkey, you stated that ” I personally don’t appreciate people saying that the China program is in a “downward spiral” when it is in regards to children with some type of medical need”.
Well I wouldn’t appreciate that either and that is NOT what I wrote in my post. I was addressing the program and all of the many changes since May 1, 2007. It appears that each time a corner is turned a new one appears. I took great offense to the spin that you placed upon my words and the order in which they were written.
And to sevenofus who wrote that “I hope they bail because they don’t deserve to be here. What a privilege it is to be a parent to ANY child”
Wow! How judgemental can one person be? Honestly. To wish heartbreak and sorrow on anyone based upon them bailing because they don’t fit your criteria of a proper parents with proper feelings. People here are only being honest to themselves and to their adoption process. You are correct in saying that it is a privilege to parent any child, I have been one for many years. But it also takes extreme bravery, honestly, and humility to admit when one may not be what is in the best interest of a child even after waiting for so long. It IS a privilege to parent ANY child but that coin is too sided meaning that it is also a privilege to parent one without special needs.
I would invite you both to read through this blog again and realize that it is filled with much love and fear and most importantly honesty. Sometimes when life makes us look in the mirror we arm up with our defensive gear and in return hurt others………
August 13th, 2007 at 6:56 pm
Being prepared isn’t even the issue for us. We have NO medical insurance. Forget co-pays and deductibles, we pay the whole bill, every time. Our HS states we have no insurance. (And yes, under the new rules we wouldn’t have qualified because of $.)
We requested a NSN child because we could never, NEVER, NEVER afford to provide the care a SN child needs. Our SW approved us for NSN only. If we are blindsided by an accident or unseen problem, we will deal with it, like we do with everything else, but to knowingly refer us a child who needs the care we can’t provide is wrong and cruel. How can CCAA claim to work in the best interest of the children and then send them to families who aren’t in a position to care for their special need?
We wouldn’t have paid our money and waited in this line to China if we were told up front we had the chance of a SN referral. We would have gone to another program or not adopted at all.
It isn’t fair for SN parents to judge those of us in the NSN program for being shocked, worried, upset.
August 13th, 2007 at 6:59 pm
When we sent the papers to China for our daughter in 2003,
we were told , that it could happen that we get a “repaired child”. So this is not new to us.
LID 14 Feb. ‘06
August 13th, 2007 at 6:59 pm
I did post something, but it looks like it disappeared.
My ds is cleft lip/palate, all repaired in China and our Craniofacial Surgeon says excellently to the point hardly noticeable. To be honest, I do not know of anyone and there are thousands worldwide who have adopted a cl/cp
condition that came with any other genetic problems. This would be the most common SN’s in China.
To be honest, none of us have any rights to choices.
You should be lucky and priviledged to be able to adopt from any country. If these countries did not make children available for overseas adoptions, then what would you do?
We all know when we enter IA, things can change for whatever reason. The CCAA can and does decide what they feel is right for their children. It doesn’t matter whether you think it is with concern or malice, it is their choice. I had a great experience adopting our adorable SN’s son. Would I adopt from China again? NO!!!
I along with others knew 3 years ago that things were going to change. My agency told us so. Other agencies knew also. They were just rumors in the air, people poo pooing them as nothing more than rumors.
I know and understand when we decide to pursue adoption it is with the knowledge of what we know at the time. We are told the basics and the timeframe, and we hope there are no extreme changes. Most adoption programs whether it is Guat, Kaz, Viet, Ind and Rus have changed significantly over the years. They have all become more stringent. I belong to a very large IA forum, and the change over the years has been amazing as to how easy it was to adopt from one of these countries 8 years ago compared to now. I am in the process of my third adoption from another country, and so far so good, but I am anticipating anything could go wrong, and believe me with our first, everything did.
August 13th, 2007 at 7:00 pm
Thanks RQ for bringing this to our attention. I was thinking of PM’ing you today to ask about this topic. It seemed that the number of instances were rising from the few stories I had heard recently. It is so important to all of us to have this information and to be prepared.
For some of the other posters: It is indeed unfortunate that so many people in this thread today attacked parents with different views. It seems that some were insulted but the person who offended them did not do it intentionally. It seems that others are downright attacking people with different views. This site is much better than that. I’m sorry to see this today.
August 13th, 2007 at 7:07 pm
Sevenofus and hakkamonkey, I don’t believe our reactions stem from a desire to have a “perfect” child, nor are we deluded about parenting; we already know that the only certainty is uncertainty. (That’s true of life, not just parenting.) Many of us here already have children and know that firsthand; many who are not yet parents still know enough to know this.
This is about our desire to work with an adoption program that has integrity and ethics. Many of us enrolled in the China program believing that to be the case. Now there are some indications that perhaps this is not entirely true. If that is indeed the case, it is neither fair to the waiting children nor to the adopting families.
Yes, parenting is always a privilege. But that doesn’t justify potential unethical behaviors by any party on the road to creating our families. There is nothing wrong with wanting integrity in the adoptive process. I would worry about any prospective parent who didn’t care about that.
August 13th, 2007 at 7:11 pm
Ok, trying again - first one didn’t go through.
Now that we know the “problem”, we have to consider the “solution”. Seems to me there are only three options.
1. Stick our heads in the sand, and hope for the best; or
2. Leave this program, move on with our lives; or
3. Prepare - as much as we are able.
All the ranting and railing won’t change a thing. These are China’s children - so we play by China’s rules. Or we don’t play at all. And I’m not inferring this is just a game by using the word “play”. I’m just stating the reality of it. And if we can’t reconcile ourselves to China’s ever-changing rules/practices, then option 2 really is our only option.
Lots has been said on this - both sides adequately represented. But it matters little what we have to say. China is doing what China is doing.
If we feel we can’t, or won’t, accept a SN child for whatever reason, we’re placing ourselves and the children in a precarious position by staying in the program.
But lashing out against one another won’t help. Nor will doing likewise against the CCAA. It is what it is. Whether it is what we thought it was when we first signed up, matters virtually not at all. Today this is what’s happening. Might be the same tomorrow.
Better re-evaluate if it concerns you.
August 13th, 2007 at 7:12 pm
sevenofus-
It is one thing to read about institutional issues etc, and SN in general. It is a completly different thing to have to become an expert on a SN and what it does or does not entail. I’m supposed to go out now and learn about every possible SN out there, in depth, and learn treatement options and plan treatment options, just in case? That’s not an insurmountable task you have set forth…
You are the one that asked us to step out of line, if we didn’t see the world the way you did.
Take adoption out of it. Do you like it when the future could change radically on you? What if you were told you could go to college, and you had a full ride? And 2 months before going you were told you would have no assistance? Would you accept it, adapt, and move on? Yes. Would you like it? Feel comfortable with it? Not have anxiety? No. That’s what some of us are feeling.
And the fact is, with adoption, we are given choices. Just like with childbirth (yes, there are options). I chose not to have ivf. I chose to adopt. One was a choice I made with childbirth. One was a choice I made with adoption. And no one came to adopting from China without making a hundred choices too: Which country, when, one or twins requested, if to ask for a gender or age, if you would accept SN, and which ones. etc etc etc. We would all like to think that it’s a beautiful thing, and it is, but it is one that is filled with mountains of paperwork, discussions, preparation, and choices…
August 13th, 2007 at 7:28 pm
Can people just post their own thoughts and opinions without attacking others??? BTW, I am not talking about anyone in particular. I just feel that this is suppose to be a safe place to go and discuss issues related to chinese adoptions. We all have different thoughts and view points…I feel like we should all respect that. Sorry RQ if I am overstepping any boundaries….I just hate it when everyone starts attacking/judging each other about who is or isn’t ready to parent. I’ll get off my soap box now.
August 13th, 2007 at 7:28 pm
Someone above just hit something with me. If in your homestudy you have that you are open to particular SN then CCAA COULD match you that way. In fact, I believe the SN program used to run that way in addition to the lists. If you are approved for SN or list those SN, I wouldnt doubt the CCAA would do that, nor would I blame them. I totally think thats what has happened. If someone who was approved for NSN only got matched with a SN child, PLEASE speak up. But my gut tells me those families had that language in the HS.
August 13th, 2007 at 7:28 pm
This is not that new. In fact, I know it’s been happening for two years at least. It happened to me. Our daughter was referred in June of 2005 with a repaired cleft lip. In our same travel group, there was another child who had had an extra finger removed. Both children were referred NSN. Neither has other needs. I think what is new is that parents are talking and communicating on a much larger scale than they were before. And I think some parents chose this path because adoption became a very visible thing without alot of forethought. While I won’t judge other parents for their level of preparedness or lack thereof, I will say I did not feel upset or deceived when we received our referral. I felt grateful. And I still do. I had never considered that this would happen to us. Now, I could never consider what we might have missed had we not taken a chance on our beautiful baby…
As to whether CCAA has the right to do this, I believe they do. Does this undermine their integrity? Not one bit in my mind. Their stated mission has always been about the children. Whether we believe them or not, we do NOT have a business contract with them. We are asking them for the gift of a precious child. We are not entitled to a child from them. If you never travel to China to receive a child, you will never pay CCAA a dime to do anything more than translate your dossier for the OPPORTUNITY to adopt a child.
Perhaps some families are not prepared for special needs, and that’s certainly understandable. But how can any one who’s been a part of the Rumor Queen’s blog for any length of time and done the least bit of thinking not have considered it may happen to them, whether it was known or unknown…
Just my two cents… from the mama of an “unknown repaired” child who would tell anyone to calm down and stand there. Don’t get out of line. You’ll miss the biggest blessing of your life, even if it had to be “fixed” before someone gave it to you…
August 13th, 2007 at 7:31 pm
You have all