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!