Saturday, December 5, 2015

Update on Sissy

Thank you for your comment, Sarah. You are right about meeting a person where they are, rewarding them for their effort and about Sissy's delayed development.

There have been a lot of trolls reading my blog lately. There are websites devoted to bashing moms like me who are doing terrific jobs with children in difficult positions. People who don't have a clue what is truly going on. How could they, when even the professionals are only beginning to realize what's up with these kids?

There are so many families out there reading my blog now or who will find it later who will benefit from my experiences. Families who will not give up on their kids, just like I'm not giving up on mine. Families who don't know what their next step should be, who may learn what to do next after reading my blog. Families who just need to know that they are not alone, that someone else is living with the same difficulties and completely understands what they are going through, and sometimes that's enough to give someone comfort, encouragement, reassurance and strength to keep going one more day.

The purpose of this post is to explain where we're at with Sissy. She's really struggling right now. She didn't know she has a special need. She is devastated to find out that she does and it's causing many behavior issues that are making things much worse for herself. It's like finding out you've got cancer. There are stages for dealing with it: fear, denial, anger, acceptance, determination to fight it. There are also things that have come out about her chosen daily behaviors that she's been doing all along that I've had to put a stop to that are not related to her special need or to finding out about it, but are choices she's persisted in making from the very beginning of her life in a family.

This post is also to explain some of the things that are being done and/or will be done. We are, however in the early stages of diagnosis and, therefore, are still working on treatment options and plans.

There are many things that have made diagnosing Sissy difficult, mostly the lies in her China profile and the lies I was told in China when I adopted her. I asked point-blank questions and got lies for answers.

When I first met Sissy in China she presented as a child with severe mental disability. The pictures on my blog from that time were only the most flattering and posed pictures, of course. The reality was that Sissy's tongue protruded from her mouth, her fingers were always in her mouth, she had low core muscle tone, she slumped beyond what we call slouching, her vocalizations and speech were odd, her eating manners atrocious, and more. I specifically asked what was wrong with her (sick? injured? did she have a special need?) and was told she was fine and just looked that way. I asked the orphanage director and "teacher" who had brought her. I asked my guide. It was my guide who pulled her shoulders upright and made her stand up straight. He also reassured me that her speech was fine, but slow. Most of us who adopt in China have been through many classes, read books, and have been taught by our adoption agencies that how kids present on adoption day is not usually how they really are, that they are in shock, are scared, etc..... Everything Sissy was doing was consistent with what the books described. But these things also meant something else, something I was thinking and asking about, but was being assured was not the case. That this was more than fear or shock, that Sissy wasn't the healthy girl I was told she was.

Looking back with the knowledge and experience I have now, though, it's so obvious that I had been lied to - right to my face. Everyone saw it in the hotel, in public, even at the U.S. Consulate, where the worker's first words to me were, "I see you've adopted a child with mental impairment." I actually said to her, "No, they said she's fine, that she only looks that way." Later that afternoon, after an incident with Sissy while still at the Consulate, we got a call at our hotel. It was the consulate worker asking me if I was sure that I wanted to "parent this child." I assured her that while difficult, her behavior was still within the range or normal that the adoption books described and that we'd be fine once we got home. I'd asked all the right questions, I got lies in return. The consulate agent had suspicions about Sissy, but she wasn't a doctor, so she did what she could, too.

It's true that Sissy's behaviors were on the list of those in the books. However, the books didn't specify the degree of the behaviors, the frequency, or the number of behaviors presenting all at once. All of this was outside normal range. I just didn't know it and neither did many, many people helping me at the time.

Also complicating things was that Sissy could seem to behave "normal" and well when she chose to do so. She appeared highly capable in many ways and even is capable in many ways. She has developed many positive qualities and abilities. This is key to remember and I'll mention it further down: the difference between the highest level of functioning and the lowest.

Once home, Sissy did learn many things. I cannot convey in writing the amount of effort and hard work it's taken to get us to where we are today because it became our normal. I'm only now just beginning to realize how skilled I am, without a degree, at teaching children with special needs. It's why nearly everyone asks if I'm a therapist, nurse or other trained professional. It's a gift, but also a curse because it made my children present much more capably and well than they really are. It's the place most families arrive at AFTER getting a TON of professional help.

Yesterday was a huge aha moment. We have added another pediatrician to our list of professionals. This particular practice is outside of Kaiser. This practice specializes in treating children with special needs - all kinds of special needs. The doctor was very impressive! She just happened to be American born Chinese, have four kids herself, and have an excellent knowledge of what life in an orphanage does to kids. After our 2.5 hour appointment - YES, she did spend that long with us - she looked at me and said, "I don't have any other parents who are doing as much for their children as you do for yours. What you've done is amazing."

She was particularly impressed by my the time, love and attention my children obviously receive, my homeschooling skill, the physical therapy regime we maintain at home (She said, "I don't think any of my other parents even know what a Bosu ball is!), how I handle the kids, what I've taught them as far as behaving appropriately goes and what our focus is for the future, our diet, lifestyle, and what I've given up personally for my children.

Back to Sissy. A common question: Why has it taken so long to realize she's so delayed and has a special need? There are many factors and I'll list the most obvious ones:

The lies I was told about her. Surely I wouldn't be lied to right to my face in China, right?

Sissy needed time to learn English, acclimate to family life and an entire new culture.

Once home, she did make huge amounts of progress: learned English, appropriate manners, made progress academically in some areas, appeared to be adjusting, appeared happy and content, we seemed to resolve our big issues with the help of our therapist, etc...

We had to get through the orphanage delays to see what were special need delays.

The next biggest disservice that occurred was that the first layer of professionals to help us attributed all her issues to being in an orphanage. When their efforts and suggestions failed to help us this past year, and as I began learning more and more and my efforts with Blossom led to Blossom becoming more and more successful and as Blossom began to pass Sissy in some areas, I began to realize that Sissy's issues were much more serious and it's at that point I started butting heads even harder with the professionals around me. Sissy's pediatrician finally referred us to the geneticist after I'd asked for referrals to a developmental pediatrician, neurologist, and psychologist. Sissy's speech therapist was key in being the first professional to demonstrate just how severely affected Sissy is in specific areas. They still have not determined her functional low in all areas, but in some areas we are down to toddler level.

The geneticist had seen Sissy before, about 2 years ago. He'd even done an array on her, but it didn't show anything. He said that I should have brought her back to him the minute I realized her issues were a special need. I just didn't know that. Who thinks about a geneticist being the key professional needed in our puzzle?

Turns out that he is our key. He took one look at the evaluation done for the IEP and said, "The great difference between her strengths and weaknesses is a huge red flag and should have been enough to have alerted everyone to the fact that this child has something severe." He also said that Sissy's condition is much more involved than just the frontal lobe of her brain. This wasn't caused by her life in the orphanage, she was born with this. He pointed out physical characteristics (they called these dysmorphic features) that indicate that this condition is congenital and not environmental.

He insisted that Sissy stay in the room while he and I discussed everything, something I'm thankful for since Sissy often thinks I'm making things up or making decisions arbitrarily. He made some very key points, which supported everything I've been thinking, feeling, saying and living...

1) Sissy was born with this and would still have the same difficulty she's having even if she had been born here. He said that there is no way people in China could NOT have known she had a disability. Looking back, especially at our early pictures, I can't miss it and wonder how I could have been so gullible to have believed everyone when, upon my asking if she's really okay, they all said, "Yes, she just looks like that."

2) Her behavior trouble is NOT as result of her condition and she is capable of choosing right from wrong.

3) Her difficulty learning and delays ARE a direct result of her condition.

4) One on one teaching is best for her. Let any naysayer of homeschool forever hold their peace.

5) The discrepancy between her strengths and weaknesses is enormous - a huge red flag that should have triggered the public school to set certain things in motion last year after her evaluation and IEP meeting.

6) This discrepancy makes teaching her all the more difficult, causing her confusion, because, she is capable of performing certain high functions, but can't apply doing them to the appropriate situation and can't often understand the most simple thing. This is why she appears so highly functioning but isn't.

7) Without learning, maturity doesn't develop.

8) As with anyone with a special need, getting enough of the right kind of help is easy if one is a millionaire and very difficult if one is not. Help is restricted to what our locale has to offer.

9) She is going to have a brain MRI as soon as it can be arranged to look at the structure of her brain. She is not going to have an EEG because of their variability in results (too many false positives and false negatives). We are also doing extensive genetic testing, which takes months for any results. While it's 98% certain we will NOT find the cause, it's worth it to try just in case we find something treatable, for example, a brain tumor (unlikely given the dysmorphic features). At the same time, if there are clearly parts of her brain underdeveloped, missing or otherwise damaged, certain therapies would be futile and, therefore, frustrating and a waste of time.

10) There is no way to know at this time what Sissy's potential is but the specialist stressed that "she is who she is," meaning, we will keep trying as long as progress is made, but since very little progress has been made in the last year, she may be at her peak. Her "peak" needs to be clearly defined here as the highest level at which she is capable of using knowledge and information that she learns. She can gain new knowledge and information and memorize things and learn new skills and facts, but being able to integrate them into her life probably won't get any better. Memorization is her strength, but she's about at her capacity to memorize, which is why she's doing so poorly at this time.

Sissy's has been doing unacceptable things to her sisters from day one that I thought we'd addressed and mostly eradicated during treatment before we moved. I thought I'd addressed and solved the issues that have lingered and cropped up from time to time and even recently. This wasn't so. Sissy just took the issues underground to a deeper more hidden level. Because of these harmful actions toward her sisters, she may not be left unattended in a room with them. Because of Blossom's progress and developing self-esteem and self-confidence, she was finally able to tell me what has been going on and stand up to Sissy and tell her to her face, "I'm not afraid of you any more! You can't hurt me any more! If you try, I will tell Mommy." It was an amazing moment for Blossom, whose voice was so strong and confident and I was so proud of her. Yet, at the same time, my heart was breaking for Sissy.

Jie Jie has also been traumatized by Sissy. It will take longer for her to recover. We will probably need to enlist the help of others since Jie Jie also has a special need that makes communication and learning very difficult.

Now, at this point, readers might be thinking, "How could a mom not know all of this was going on?"

Many, many, many parents have asked themselves this question over the millennia. Parents are usually the last to know, to find out, because the children hide it from us the most. How many times have we seen violence in the media (shootings at schools, etc...) and the parents are stunned, yet looking back, all the symptoms are there. How many times have all the symptoms not been there and there are not answers or it's a bit mixed and a picture can only be put together after much research?

The truth is that I knew SOMETHING was going on and I'd been addressing it and working to uncover more of it, but, again, the behavior is insidious and the professionals telling me all the wrong things and making excuses and giving me completely wrong advice. Thankfully, I was taking many actions that did help and did prevent escalation, but without more information, there was no way I could know what I was fully dealing with. Until now!

And this is common! It's so unfortunate that parents of children with special needs fight all their lives to get their kids the right care. They fight for treatment and therapy, for nursing and other supportive care, for equipment, and even for adequate education for their children. It's a torturous, frustrating, time-consuming beyond all reason and belief, more than exhausting, often futile, and it destroys families and children every single day in our country.

I have been fighting for each of my children's quality of life and care from the very first moment I decided to adopt them and I've never stopped.


sarah said...

I am truly sorry if my post was offensive. I did not mean for it to be at all. I think you are a great mother (from the posts I've read) who is searching for answers and help. I have a child with autism and I know what an overwhelming feeling knowing something "isn't right" but having everyone around you tell you everything is fine. I would think that feeling would be even worse when it was people who deliberately misled you. Im so glad the pediatrician and geneticist took time and that you got some answers. Hopefully that will pave the way for some help for Sissy. I also totally understand the frustration of all these therapies and help out there and not being able to financialy make all those things happen

K said...

I didn't think your comment was offensive at all, Sarah, that's why I posted it and thanked you. Please don't worry.

Anonymous said...

How was Jie Jie's APD diagnosed? I'm curious, I think a child in my family has this and I'm unsure of how to proceed.

Anonymous said...

I have read your blog for a long time, and I would describe you exactly as you have. You are a tireless advocate for your children. Your love for them is obvious. Your writings have undoubtedly helped many parents struggling to understand their children. Bravo! Keep up the good work! This may sound crazy, but at times I have wondered if Sissy might have Down Syndrome. Two of my adopted daughters have DS, and their dysmorphic features are completely different. One of them does not appear to have DS at all. She does not have the typical body build - she is very slim with long arms, legs and fingers. She has very thick wavy hair. Her eyes are barely almond shaped. Her mouth hangs slack only when she's tired, so it is not noticeable most of the time. She has translocation DS, which is a little rare. It doesn't necessarily affect which features she has though. It simply means that the genetics of her parents are such that no matter how many children they have, 100% of them will be born with DS. She also has some pretty good coordination skills. She has learned many socially appropriate behaviors since being home, and therefore people give her MUCH more credit than they should about what she truly knows and understands.

Good luck as you move forward. I can't wait to see if you can get to the bottom of Sissy's issues. You are doing a fantastic job!

Anonymous said...

Has Sissy's hearing been tested? I read back that you had to yell to get her attention and that's pretty common with people who have difficulty hearing. By your own observations, she does a few things which would lead me to believe that she may have something wrong with her hearing, including the miscommunication that frequently seems to happen.

Maureen said...

A couple of years ago I was sitting in a retreat. The presenter made the statement. "God gives ALL of us a special gift. Do you know what gift God gave YOU? Do YOU use that gift to the best of your ability, in a way that praises Him?" My gift is that I'm a very good mother to children with special needs. I'm a good advocate for people, particularly children, with special needs, but I really am gifted at being a good mother (no- these two skills are not necessarily interchangeable, frequently they are but not always). I have been told that if I was not their mother, both of my boys for very different reasons would not be functioning close to the level they do (and in one child's case, have the good health he does).

That said, my 7 year old still has not been given a diagnosis of whatever his underlying problem is. I agree that the geneticist is such an important person on the team. He has really helped identify some of the day-to-day issues and pointed us in the right direction for that specific help/treatment.

As a person (who is in no position herself to do this for me) told me, you need to find YOUR outlet for all of the frustrations and stresses that come with children with special needs.

K said...

Yes, Sissy's hearing has been tested a few times and it's just fine, thank you. Sometimes the obvious is overlooked.

Anonymous said...

Has Jie Jie's hearing been tested? Most people with APD are functionally deaf. Using ASL is one of the things that can make your life and her life so much easier. You can learn ASL at a local community college and your daughter should be able to learn it from some program through the state.

Jie Jie is going to really struggle and suffer in school the other she gets and the longer she goes without learning ASL. Even if you think she's fine, she's managing ok, she can understand me after a little bit, that's not how it works for her. She will be having massive frustration and that can come out as fits of anger, throwing and breaking things, and school will be so much more difficult for her. She might get the same grades, because she's learning from the book, but she won't be able to participate in class and when asked she'll probably give the wrong answer because she couldn't understand the question. She may be bullied from this and even if she isn't, she's going to be bullied because she can't function in groups. Girls are big on groups in her age and she'll just be left out. Sign language is essential for her.

K said...

Jie Jie and all of my other children have all had hearing tests and their HEARING is perfectly normal!

Anonymous said...

My son has ADP and doesn't need to learn ASL. He hears just fine. Multiple steps need to be broken down into 1 or 2 directions and a check for understanding is essential.