My Mind Is Officially Blown

When we headed to China to pick Minsy up over a year ago we expected to meet a little girl who had some feet issues that were going to have to be fixed. We thought that the big issue would be dealing with those feet .. and really, compared to so many other special needs, that was not going to be a very big deal. With a little physical therapy and perhaps some corrective surgery. she would be able to get back on track. Well, it turns out that her feet have not ended up being the problem we expected. We still have to do physical therapy, but no surgery. Hurray! Instead, we have had to worry a lot more about her small stature. When we met her I looked right over her, not recognizing her, because I expected a four year-old child. She looked to barely be the size of a two year-old. Even the people in China thought that she was closer to two. Sooooo ... we've been spending the past year trying to figure out exactly how old Minsy really is. If she really is five years old, then she is significantly delayed in almost every area, socially, mentally, physically. If she is not really five, then we needed to change her age legally. If she is really five, then she needs some serious hormone therapy to help her get a bit taller. We needed to see what was causing her growth to be so stunted. In order to solve the mystery of exactly how old Minsy should be, we started seeing a pediatric endocrinologist in Springfield. He is a very thorough doctor who loves to order blood tests and x-rays. He did lots and lots and lots of tests on Minsy, and he ultimately decided that we needed to just keep her age at five and move on from there. He has delayed starting hormone treatments until he could get some more information about the trends in her growth that can only come after watching her over time. So we got it in our heads to treat her like she was five. I wrote all about this big decision in my blog post HERE. 

Soon after our big we're-going-to-treat-Minsy-like-she's-five revelation I had to take her to visit our new primary care doctor. She is actually Dr. Debbi, who I LOVE. She was my doctor for all of our births after we moved here from Springfield, but she moved her practice for several years, so we've gone to local doctors. Now she is back and working at the Mercy clinic in St. Robert, so we got her back as our doctor. Yea! Anyway, she took one look at Minsy, and she said that we needed to get a second opinion about her age from a doctor who was familiar with Chinese adoptions. Dr. Debbi was just not convinced that Minsy could actually be five. So we made an appointment to meet with Dr. Ladage at Cardinal Glennon Children's Hospital in St. Louis. Dr. Ladage is the preeminent pediatrician in the state of Missouri who specializes in international adoptions. She knows her stuff. And hopefully she would know what was normal about Minsy's development and what was not. 

I left today with one big question that I wanted answered. Should we keep Minsy as a five year-old and treat her accordingly, or should we change her age to a younger age closer to her developmental skills? Did I get that question answered? Yes. But I ended up getting so much more information than I expected, and I left the hospital on the verge of a nervous breakdown. I can hardly wrap my head around what we were told today, but I'll give it a shot for posterity. Here goes ...

After looking through all of the medical records that we brought today, both those from China and those from the many doctors we have seen here in the US, Dr. Ladage said that it seemed fairly clear that Minsy had not been severely malnourished. That had been one of the prevailing theories to explain her small stature. But her growth rate since being here in the US has not spiked as it would have it nourishment had been an issue in China. However, it is still possible that Minsy does have deficiencies in some vitamins and minerals which could affect her health in some ways. However, the really big revelation of the day was that Dr. Ladage is convinced that Minsy is at least five. In fact, she said that based on her developmental milestones and teeth records from the day she was found in China would point to her actually being a bit older than we have her ... more like five and a half!

Say what?????

Okay. So we're keeping her age the same. Our little toddler is closer to being a little girl than a baby. Fine. I can deal with that. At least I thought I could deal with that. But then, as Herman and I talked more and more with Dr. Ladage about what this means for Minsy and her development my eyes really began to open to the difficulties of our situation. If we tried to think of Minsy as five, it was clear that she had some significant delays in gross and fine motor skills, speech, and general development. She is lagging behind in her 3 year-old preschool class. In the 5 year-old class she would be blown away. There would be no way for her to keep up. I have always explained away these lags by thinking that she just needed time to catch up after being in China for so long with little academic stimulation and then having to transition to the US with a crazy new language and all that goes with it. But Dr. Ladage explained that in a child Minsy's age they expect the child to be able to catch up within the first year of residency, not quite transitioning to learning in English, but at least transitioning to being able to communicate very effectively and at age level in the language. Minsy is not even close. We have recently been dancing our happy dances because she is able to string three word sentences together every once in a while. After doing a rough developmental test on Minsy today, Dr. Ladage found that Minsy performed some things at a 2 1/2 year-old level, most things at a 3 to 3 1/2 year-old level, and socially at a four year-old level. No matter how we looked at things, she was greatly delayed. 

So what does that mean for her future? Here's where things got crazy for me. Dr. Ladage felt as if many of the delays Minsy shows cannot be explained through environmental causes. She believes that these are simply cognitive deficiencies that Minsy has, and this is something she will always have. Based on some of Minsy's physical difficulties, Dr. Ladage also believed that there was a good possibility that part of Minsy's brain might be slightly underdeveloped. That threw me for a gigantic loop. To this point I have always believed that Minsy was an intelligent little girl who was simply in need of more stimulation and immersion in our society in order to catch up. Even if she was lagging behind, it was simply because she had gotten out of the gate a bit later than her peers. Now it seems as if this is only a partial explanation. It seems as if she will have struggles keeping up with her peers for her entire life. There isn't anything inherently wrong with this. Not at all. But it just threw my entire way of looking at her situation. I think that our plan of attack as we try to prepare Minsy to be a productive member of society and a happy and well-adjusted young woman would have to be adjusted ... a lot. 

The big question still is how much of an adjustment we will need to make. Herman thinks that we were under-reporting her cognitive achievements, which would make her developmental ages a bit higher. At this age that makes a big difference in how you predict her future abilities. If we were 100% accurate in our reporting of her achievements, that would put her at 50% of her age when it comes to her abilities. That sort of gap predicts significant cognitive difficulties for the rest of her life. But if she is actually performing a bit better than that, then it could just be something that she could eventually overcome and get close to her peer group in abilities. I don't think that she will ever be the highest achiever in her class, but she could be able to go through a normal school curriculum and do okay. We'll just have to wait a bit and see how things play out.

So why does this even matter right now? Well, it looks like she'll be attending kindergarten next year here in Waynesville. And she's going to be tiny. So. So. Tiny. And she's going to be way behind her peers developmentally. We will soon need to figure out if she will just be pushing through school with her peers, working to gain the same knowledge and credits as everyone else gets, or whether we will set up an IEP plan that just allows her to go through school with her peers but not have the same expectations to meet. We'll see. We do have some time. Right now it seems as if our plan will be to have her enter kindergarten next year and then have her go ahead and repeat the grade again. That won't make her much older than the others in her grade, and it will give her a chance to catch up if she is going to. At that point we'll have a better idea of what sort of education she will need to maximize her educational experiences. Tomorrow I have a meeting with the special ed coordinator at the early childhood center for the district who will work with me to set up a good plan for Minsy to have right now as she is in preschool. So many decisions that can matter for her for the rest of her life. It is a bit daunting to me.

On a side note, one weird discovery we made that will require us to come up with some creative solutions: Minsy has the most atrocious smelling breath I have ever smelled. Ever. It is absolutely horrific. One time a teacher of hers believed that she had a dirty diaper. That's how bad it smells. And unfortunately, some of her classmates have mentioned it, saying that she was stinky. They don't mean it maliciously, but it is only a matter of time before kids start to get mean about it. Dr. Debbi believed that there was something stuck up Minsy's nose that was causing the foul odor since that was usually the cause. So far no one can see anything, and nothing has come out. We talked to Dr. Ladage about this, and she had some bad news for us. She told us that she has seen many, many kids from China, and she has two adopted Chinese children of her own, and unfortunately with some (not all!) Chinese children, there can be a weird body or mouth odor that is just part of who they are. There is no real reason for it, and there is not a lot to do about it. She said that sometimes you can attribute it to reactions to certain foods, but not always. Bummer! That will take some getting used to. We will monitor Minsy's diet for a bit to see if we can find any diet connections. Other than that, it looks like she is going to become very familiar with Altoids. Hope she likes them.

After our two hour visit with Dr. Ladage (by the way ... I LOVED her so much!) we had to head to the lab for an x-ray and bloodwork ... because that seems to be obligatory any time we take Minsy to any doctor anywhere. As we waited to be called back to the lab I started to really freak out about this. It wasn't so much that I was concerned that Minsy was less of a person than I thought her to be. That wasn't it at all. Minsy is still the Minsy that I have always known and loved. Nothing about her has changed. I just suddenly started thinking that I was going to have to be a much, much better mom than I have been. I was going to need to be more organized. I was going to need to do better at keeping a routine. I was going to have to be more patient. I just couldn't see myself rising to the challenge. And the whole thing just freaked me out. Luckily, having to be supportive for Minsy as the technicians drew what looked like a gallon and a half of blood out of her was enough to pull me out of my pity party freak out. And this was another one of those moments where I was grateful to be married to a man who has so much knowledge of the public school system. Herman was able to talk me down and explain some of the options we would have as we looked forward to her education. And it didn't seem all bad or scary. It seemed very doable.

The good news about today's visit is that we can finally really begin to move forward and deal with things as they come at us. Up to this day we have always had this question in the back of our mind as to what exactly Minsy's true age was. Now we will just embrace her as a five year-old. If she needs special services through the school, then we'll get those for her. If she needs medical treatment to help her, then we'll get it. And we'll continue to love and strengthen her at home as part of Team Blau. It is turning out to be quite the journey with her, but she is such a happy and good little girl. Every minute with her has been worth any struggle that might come our way. We know we're doing what we were led to do, what we are supposed to be doing, but more importantly, we are doing what we love to do. Hopefully I just have the right mind to make the right decisions to help Minsy have the happy life she is meant to have. Fingers crossed.