In the Beginning....

I just went through this entire blog to take notes for my graduation post. This will probably end up being 'it', since I don't want to type this all over again. So, in the beginning, on a hot summer day in China, we met the daughter we had waited so long for. She came to us easily, more entranced by the lights in the room that worried about who was holding her. We all took turns holding her, mom, dad, and three big sisters. Not a tear was shed, and she was entertained by the screen of the digital camera. We were relieved of the many fears that had been caused by some follow up pictures sent to us while we were waiting between referral and adoption. In the pictures, she did not appear healthy and some other things had us concerned. When we got back to the room, the tears came. I knew it was good that she was grieving, that meant that there was an attachment to her nanny. She stopped crying the minute we put her in her little bed. It meant those scary strangers finally put her down and got away from her. The next couple of days showed us how delayed she was. She was almost 15 months old and needed support to sit up. Armed with all of the stories from other parents, I wasn't worried and thought she would catch up quickly just like all of the kids in the stories I heard. Although she made gains when we got home, they weren't at the pace we expected. The first time we went outside, the wind in her face scared her. It was the first of many things that terrified her. It took months to get with the early intervention team. They set us up with physical therapy and we were on a waiting list to get into speech therapy. The physical therapist told us to get her on her tummy, even though she screamed in fear everytime we did this. Poor thing must have felt so vulnerable, she couldn't even roll over. Many months passed, and she finally got crawling on all 4's down. Everyone wanted her to walk, because she took a few steps a couple of months after coming home, but I noticed she didn't know to put her hands out to break her fall. Looking back, it was one of the many signs that things were not right. She walked at about 22 months, but still didn't know how to catch her fall. She was a constant hazard to herself and couldn't be left alone for a second. Although she babbled a LOT, she didn't have any words for a long time. She would always put her arms in the air and cover her eyes and forehead with her hands. Only recently, I learned the reason why she did this. She refused to straddle a ride on toy or anything you needed to be in that position for. For her, it brought up memories of being left for hours on a hard wooden potty that she had to straddle. The bath was another source of terror. We started out in a baby bath in the big tub, and gradually worked up to the big tub, but it took a long time. Bath toys were pushed away like they were something that could hurt her. She took no interest in bath toys for probably more than a year. It took more than a year to try any solid food, even then I had to pulverize a cheerio before I put it in her mouth. I think it took 2 years before we could brush her teeth, she was so orally defensive. Even though she played happily by herself or next to someone, she wasn't interested in people for at least six months. She would interact with us, but never seek us out. We could point out the birds or anything else and she would ignore us. For a while we thought it was the language barrier. Then we suspected that it might be possible that she couldn't learn the way other kids did. She was so good at avoiding and ignoring, that we just couldn't tell what she was capable of. These were very scary times. Her vivacious and sweet personality kept all of us happy and head over heels in love, and we joyfully accepted her as she was, all the while doing everything we could to maximize her potential, whatever that was. Meanwhile, I was joining yahoo groups and scouring the internet for information. No one seemed to have any answers for me. Then someone posted on my adoption agency list about Bette and Neuro-reorg. I did what research I could in the short time I had, and decided to take the plunge. I was pleasantly surprised to find out that Bette understood all of this, had seen a lot of it before, AND had a solution! I was the one to suggest to the pediatrician and early intervention team that I thought OT could help. I was the one who discovered sensory integration and sought out an OT who specialized in it. Unfortunately, OT only helped a little. We had such big concerns in the beginning, any kind of help was accepted. We found out at our NR evaluation things that no one else had even looked for. We had a rough road ahead of us, a projected 2 year time frame of daily work. But we had a huge list of things that needed resolving. She was afraid to go up our stairs alone, afraid of people clapping, hated Disney World, flying on airplanes, refused to hold my hand in a store, would walk out our front door and just start walking away. She had a strange fear of being placed on a bed. She was obsessed with circles and staring at lights, even the sun! On the plane ride home from China, she wouldn't go to sleep until I got up and let her be in the seat alone. She never looked to anyone for approval or responed to praise or coersion. She never showed any emotion other than happy or scared. She never called us mommy or daddy or used her sisters names or even the names of our pets. As she got older and started to speak, she would only repeat what someone asked her or monologue. She would never converse or answer a question. Now that I know so much more, those were alll glaring attachment problems. I had periodically inquired on the attachment group if those things looked like issues but no one ever said is was. I even went to a semminar given by our current AT thinking it would give me all the answers. What it told me was that attachment wasn't our issue. It's only after looking back that I can concisely list all of our issues in one place. They didn't all happen at once, so it was harder to identify. I guess we had so many other things to deal with that the attachment seemed like it was a small issue. After all, attachment was making steady progress, it was just slow in coming, just like the development. She used to hit herself in the face and bang her head when she was frustrated, wouldn't accept comfort, had little eye contact, she loved music yet didn't move her body to music, she wouldn't point to an object in a book. She was scared to have her picture taken, didn't respond yes or no, never tried to sing, never spoke a word in the car, refused to to sit in a high chair or sit at the table. She would never sit in a shopping cart, wouldn't weaar a jacket or certain textures, hated stuffed animals, play doh or anything like it. She never knew when she was hungry and didn't feel pain. Even the vital response to pain was missing. Poor little baby, one day, I saw her standing still with a funny look on her face. She had put a clothespin on her finger and was just standing there, not knowing what to do. When I got it off, then there was a delay, and then she cried. When she got hurt, she would try to get me to 'wipe' off the hurt. She just didn't understand pain. She had no empathy, no sense of danger, she used to slam into people and didn't know about personal space. She never imitated people(coincidently one of the bonding tools we could never use). She would obsess over things, hated endings of any kind. She had such anxiety, even in her own house. As time went on, we would have to re-word a sentence several ways to get a response. She pretty much had no self regulation, she became constantly busy and asked questions constantly. All of the potential diagnoses overlapped, I had no idea which area to pursue, even during our NR journey. At one point, she fit the diagnosis for Autism Spectrum disorder, Sensory Processing disorder, Attachment disorder, global developmental delay, motor planning problems, apraxia, expressive language delay, auditory processing problems, Cerebral palsy, ADHD, and feeding problems. Today, we are still working on feeding and attachment. A year ago, she was evaluated by the public school. She still qualified for developmental delay. At 4 years old, she still couldn't count to 10. She recognized all of her letters and knew thier sounds, yet could not identify the numbers 1-10. We worked on harder areas while creeping and crawling, that is where she learned the best. Now I am happy to say that she can count to 100 and higher, is beginning to read and does complex math problems like 92 + 6. She is doing great in school and has no problem with anything. She has problems with anxiety, but it is next to nothing compared with where she started off. In pre-school, she was deathly afraid of the fire truck and ambulance. This year, they had a problem with their fire drill and the fire truck came to school anyway. They told us that she climbed up onto the fire truck! She even conquered the dreaded giant inflatable bounce house. Everything she couldn't do or wouldn't do last year, she is doing this year. Even when we were full time in NR, the changes were nothing obvious in day to day living, even though they were happening. She just needed to be challenged in all of those areas to know for sure, they weren't things that needed to be demonstrated daily. I think this point needs to be stressed, changes are happening, even when you don't see it. One day is the tipping point for each obstacle, and you just don't know what day that will be. One of the most remarkable changes was the use of her left arm. When we came home, her brain didn't recognize that her left arm existed. She would cleverly balance a book on it's spine and open it up. She would carefully do this each time she turned the page. I went through the motions with her using her left hand to help the right and then she would try it on her own, not using the left hand! The deficits in her brain showed up in the left leg as well. She wouldn't use it for creeping, it just poked up into the air, waving like a little flag. It seems she did this forever, then one day the left leg got involved. She used both legs but didn't use her feet and toes. I thought she had just gotten so efficient at doing it this way that it would never evolve into the "ideal" creeping. Eventually it did, much to my surprise. I am so happy that we stuck with it, it was by far the hardest and longest therapy we have ever done. It was worth every minute. There were plenty of days when I was ready to give up. I'm glad I didn't. Now we are working on the finishing touches. It's like we already have the icing on the cake, we are now just making it fancy. We have graduated the big stuff, and if we stopped now, everything would still be okay, even more than okay, they would be great. As long as there is work to be done and more to be accomplished, we will be doing it. After all, we all continue to make ourselves and our kids better people each and every day, even if it is in a different way. We are all works in progress. I have a feeling we will be working through the emotional journey for a long time, and attachment will need work as well. But I can't tell you what a relief it is to be where we are today. I am looking at a new school for the fall, and I may not even have to go in and brief them on anything more than I would any other child of mine. To think that last year at this time, we had an IEP full of recommendations and letters to the school from the AT and the OT. This fall, none of that applies. How sweet is that? I can't even begin to say how much I have learned from my daughter. She has made me a better person and has changed my life and how I look at others. I am more compassionate, more patient, less judgemental, more disciplined, better educated, and more appreciative. I didn't get what I expected when I adopted, I got so much more. I got what I didn't know was out there to have, how did I even deserve such a gift? Now it is my job to help others, and to find a way to present it in a way that will be accepted so that other children will have a future that has no boundaries. This is the end of one chapter and the beginning of many new and exciting ones to come. Look out world, here she comes!

Recap

I just got finished reading this blog from the beginning. It took several days to read through it all. There are so many spelling errors, I don't think I'll ever have time to go back and fix them. I always have to do this so quickly, there is no time to go back and edit. I really do know how to spell. I thought I wrote more detail than I did, but I think there is enough there. I wrote down all of the details for our long awaited graduation post! I can't wait to write it. Our new routine is going well, I think we have the first pattern down and are ready to add the next one. It looks like we will be doing these through the summer. It won't be difficult. These can be done anywhere, so even going away will not change anything. We are hoping to go to China again this summer. Lately, she has been saying she wants to live in China when she is older. I told her we need to learn the language better. We only have 5 weeks of school left, I am so excited! I can't wait for summer. I think this summer is going to be a great summer for her, a time of great gains. I hope I can keep writing about our progress.

Our New Routine

Our new exercises are going well, except we didn't do them yesterday. S has soccer on Wed and Friday's, so things get hectic. I wanted to write what I noticed last week at soccer. S was running and I noticed that her legs and arms were working together. Her knees were straight up and down and her arms were in sync with her legs!!! This was not what she looked like 6 months ago. She couldn't march in place with her arms and legs in sync. Her knees still went outward with a wider than normal gait. All of that creeping made a difference. Believe it or not, she was still a very fast runner when her legs weren't quite in the right position. If I hadn't been through this journey and someone told me that her legs and arms weren't working together, I would have thought, "Who cares? She is a fast runner." I think that is precisely why people don't get help. They don't see anything that subtle as a hinderence. I freely admit, I wouldn't get help either. It's only when other problems show up later that parents get help. I have said this so many times before, but it's worth repeating. I am grateful for the extent of our early obstacles or I would have never found the help that we needed. How do I spread the word? I've seen people at Bette's talks shaking their head in agreement at all she says and how it applies to their children and then just walk away. I was so grateful to encounter someone who understood everything we were going through and what to do about it. I am so grateful to be where we are in the healing process, but it still is hard to hear people talk about where we came from. Apparently they were very worried, but nice enough not to express that to us until we were in a good place.

I'm Heartbroken

Okay, so I did what I said I would do last night. I got out the story books I made about adoption. I got out the photo album of the only baby pictures I have(an early life book). She happily looked through the books and listen to HER story. She has always loved these books, and tonight was no different. She flipped through the photo book a little more quickly than usual. When I turned out the lights for bedtime, she gave me a huge hug and told me she loved me. Then she said something very sad. She asked me if I would never______ and never______ and always take care of her? I can't be sure exactly what happened to her, but her story is the same each time. I asked her to tell me more about it and she said she couldn't because the story was too long. I asked if she could make it short and she said no. Then she said that HE told her not to tell anyone. I thought this was really strange, I would think that if she saw something that they wouldn't have told her not to tell anyone, she didn't even speak a word in China. I thought about it for a while and figured out that she was probably saying what someone said, but not to her, but her nanny or other adult. I think this because she told me what someone said before this. This was the story she told me where I asked questions and I could verify the accuracy based on the details she provided. I had pictures that showed what she described and I know she had never seen them before. I am writing these things down in detail because someday, hopefully, the memories will fade for her. This story will be written down so if she is ever troubled by memories when she is older, this can help her work things out.

On a better note, we started our new program yesterday and she did great. I took me a while to get it down myself, it took a lot of coordination!

Re-eval report

We had our re-eval on Thursday. No, we didn't graduate, but we are so close that it is almost certain we will by next time. We got just a short list of activities that will be no problem to work on. It feels so good to be here, I hope I can keep up the momentum to get through the finish line. I had wanted to start ILS with nothing else to do, but looks like we will have to do both. We have so little to do, that it will work out just fine. Yesterday, we went on a class field trip. S wanted to hold the teachers hand and not mine or her dad's. I'm really not sure if this was her rigid thinking or a serious attachment issue. I think I'll go for advice on the attachment group instead of consulting our AT since there really isn't anything else to talk about. It was great to see her interact with her classmates. She preferred her teachers to me though, which I thought was a little strange. Then something really strange happened. She said to her teacher when she grabbed her hand, "Are you my mommy?" The teacher said no and then she asked, "Did you take care of me until my mommy came to get me?" The teacher was distracted with the other kids so I don't think she answered her, at least I didn't hear an answer. I asked her later that day why she asked her teacher that and asked her to explain. I asked her if she thought her teacher took care of her in China and she said yes. I reminded her of who took care of her. She seemed to remember and was okay with that. I am confused that she is confused. Do I go over her story again to refresh her memory? Could she actually be confused? I feel terrible that maybe I should be going over her story again and again. I am afraid to bring up bad memories. I guess we need to get past that. She loves going over her story books, so I shouldn't hesitate. I have just been following her lead on when she wants to read them and look at them.

Bette did a talk in my area, and it connected me to many more people. I want to be able to share this blog with them so they can read our story and be encouraged. But, as usual, I have thrown people under the bus and don't want local people to be reading about them, especially since I have stories about people we have dealt with. There are no names, but I think I will have to modify things before letting people read it. In some ways I regret that, but they are all part of our story. People who don't understand have been the biggest obstacle to our healing and progress.

Our Re-evaluation is Today!

Our re-evaluation is working a little differently this time, so I did a phone consult with Bette before she actually sees us. I have been racking my brain to come up with something to tell her. I asked my husband to come up with things also, and he could come up with one. Did we ever think we would see this day? Yes, there are some lingering issues, but they are slowly getting better and are not NR related. Bette said she's not ready to let us go, she wants to keep in touch to hear the rest of the story. I am confident that her future will bring great things. I don't know that I will keep up the blog as much as I have been, I don't even know if anyone reads it with any regularity. I am glad I documented her story, because I think it offers hope to so many people dealing with difficulties. I have found so many answers, I want to be able to help others and save them and their children precious time. Our story isn't over, even when our NR story ends. If fact, her new chapter is just beginning.

Another Accomplishment

This past weekend, we went to the science center with another family. S loved it, we have to go back for sure. S asked to go into a hurricane wind simulator. She has always hated everything involved with what she was about to experience. Wind, fans, and motor sounds-all on the most feared list. She didn't love it, but she didn't want to do it again. She wasn't in a panic to get out of it. She calmly walked away and went on to something else. To use her words, I was "impressed, proud and big happy" with her. We had at least one more crying incident. This one came on much faster, she was able to turn it into a cry very fast. Then-it was over and all was good again. I think she is getting the hang of it. Her 10 year old cousin is staying with us and she is having a hard time with it. She adores her and is obsessed with her, but she is a little boss monster. She wants to control what goes on and it is really difficult. I'm going to post on the attach group for some advice. This isn't the first time she has been bossy. I know that she has a need for control because of her beginnings, but I also need to know how to deal with it. We have less than a week before her re-eval.

One Quick Thing

We have been out of school all week so far, but I think even if she weren't sick, she wouldn't want to go. She has been very strange when I ask her if she will be ready to go to school. I asked her if there was anything going on that I should know about, then asked leading questions to try to figure it out. Today, since she is better, I told her that I thought she would go to school tomorrow. She said she didn't want to go. I told her she had to go, and that school was almost over for the year. She was sitting at the table getting ready to eat something and I looked at her precious little face and saw one big pout on it. This is the child who doesn't cry sad tears. Or should I say, didn't used to cry sad tears. Somehow I got it out of her that she didn't want to go to school because she didn't want to be away from me! Did I hear that right? She was upset because she wanted to be with me! Oh, we have come so far... I watched her face trying to keep in the tears, her eyes were all welled up with tears just waiting to spill out. I wiped her eyes as we talked and told her it was okay to cry. She let loose, crawled into my arms and cried. It was while I was comforting her that I discovered that she didn't know how to cry. Not that she couldn't cry, but it just didn't sound like sadness. She would kind of force it out, bystanders(and judgemental people) would think she was faking. She would let out those little forceful half yell/half cries now and then, with the rest sounding like fake crying. I was devastated to think she had held it in for so long that she lost the ability to freely cry. I just let her go for as long as she needed to, which was probably about 5-10 minutes. Again, after it was over, she was much better. She asked if she could stay a short day and I said she could. She eventually said she wanted to stay a full day. I told her we would decide in the morning. I am proud of her that she seems to be allowing herself to feel and express sadness. I was also thinking how hard this is for me to know her little heart is allowing itself to be vulnerable again. Although I thought life was so hard before, not knowing how this would all unfold, if she would ever be able to do the things she is doing today. Now that all that is in place, I find myself wishing she was so tough like before. I don't really mean that, she was in a terrible place before, I just didn't know how she was suffering. There was so much else that she was working on at the same time. We helped her in every area, just some came together before others. She really misses her sisters at college and she just recently misses her daddy when he goes to work. I love that she is showing that she misses them, and at the same time it is hard to know she misses them. I know this is a big step in her attachment, and thrilled that along with everything else that's going well, that we have this too.

Never Thought I Would See The Day!!

As I typed the title, I think saying never is a little harsh. I hate to say I think something will never happen, but this one was close to possibly never happening. Anything with a motor sound, particularly a fan, was an object of complete terror. Even a slight breeze was terrifying when we first got home. Since fans are used EVERYWHERE in China, I think my poor baby had a fan blowing on her and she was powerless to get away from it. Imagine being 14 months old and not being able to roll over in your crib. Anyway, we have had a gradual desensitization to fans, and slightly to motors and motor sounds. This past Sunday was our church picnic. They always have the infatable bounce houses. In the past, she wouldn't go anywhere near them. This year, she anticipated it and said she was going to go on it. We were pretty convinced that she would go near it, but not sure she wouldn't bail out at the last minute. There was a large one and a small one. She decided the big one with big kids jumping wildly was not going to be the one she tried first. She very cautiously went into the small one. She held onto the sides at first, and within a few minutes was jumping. I was jumping too, with joy!!! My little one had conquered something that was at the top of her most feared list!!! Each time she does something new, she gains confidence.

She brought up that she let herself cry. She has been giving that so much thought. None of that has come up again, but she hasn't forgotten about it. She told me she had a nightmare about dying. She has been home sick yesterday and today with a fever and cough. Yesterday, I had an appt to get my teeth cleaned. She is afraid to go to the dentist, she hasn't been as a patient yet. She has shown her teeth to the hygenist from a distance, but that's as far as she has gotten. She sat in the chair in the room with me the entire time like a little angel. I am so thrilled to be at this point in her life. We are where I imagined it would take years more to get to. I'd better get to planning our graduation post!!

Catching Up-again

We had our Spring Break this past week, so there hasn't been any time to catch up. I really need to prioritize better. I have a bunch of organize books and websites to peruse, yet don't make time to do it. I just typed a huge post and it didn't save!!! So much for trying to catch up. Now I don't have the time to write it all over again. So the short version is that we had a breakthrough with emotion. I think I was able to turn around the situation and make it something good. She was saying she didn't want to live and then when we went to bed, she was letting out these deep half scream, half cries. I told her how proud I was of her that she let herself cry. She really wasn't letting herself cry, but I grabbed the opportunity to convince her that it was an amazing thing. It really was, because I have only seen this type of release only 2 other times. They were each very healing, but horrible to go through. She seemed to be comforted by the thought that what she was doing was a good thing. When it was over, her mood took a complete about face. She was sweet and happy and telling me she wanted to live forever. The next morning all was fine. This morning she woke up saying she was in a bathroom and lost forever.(her nightmare) This comes from our 2 recent trips where she ran ahead onto an elevator and train. I had to tell her she could get lost if the doors closed and we weren't right behind her. When we are pulling luggage, we can't run into those places as fast as her. I wish I had ime to elaborate like I did in the erased post, but I don't. We go for our re-eval in less than 2 weeks. I am not expecting to graduate, but we are close. I'm ready to move on and do the integrated listening program with her over the summer. That should take care of any remaining issues.