We're Back!

We got back two days ago now and are recovering from jet lag. Our trip was extremely difficult for all of us. Overall, S did great, but it was hard for her to be in the orphanage atmosphere again. It all worked out though, she spent a lot of time away from the kids and had the luxury of playing and interacting with them when she chose to. It was very interesting to see how they treated her and where they felt she fit in. The children ranged in age from 1 to 14, with several children older than her. She made fast friends with a 10 year old girl the first day, but decided she wasn't overly comfortable playing with her or the rest of them. The children were very aggressive, which scares her. The children were very protective of her, and initiated play with her. I think she learned a lot from being there, and my belief is that the more positive experiences she has in that environment, the better she is able to process her feelings about her first year of life. Honestly, I was pretty traumatized from the experience there. I was emotionally drained everyday, feeling hopeless to change the situation for them. I must press on and get past my own shortcomings to try to help these kids. Some of them were so smart and have such potential. Hopefully we can support them to continue with school. One 15 year old girl practiced her English with me while I practiced my Chinese with her. I would ask her a question in Chinese and she would answer me in English. She was the only one comfortable using her English, even though all of the kids that attend school learn English. There was one boy who was so eager to learn, he would ask me to read him the English words and he would write them on the board. All of us got sick at one time or another except S. I was sick the longest, and I still am recovering from a cold. It is so good to be home. S said things like, Home Sweet Home, and There's No Place Like Home. It was so cute. She starts her new school in 2 weeks, I am hoping for a good year. We need to get back into a routine for our NR and our vision exercises. S's glasses came in the mail while we were away. She couldn't wait to get back to wear them. They need to be adjusted, they don't fit her properly. She is excited about them though, and she looks adorable. My level of exhaustion right now is not making me look forward to the task ahead of me. At this moment in time, I just don't know how I'm going to do it. I'm still unpacking, washing clothes, and catching up on paying bills. It is so hard to be gone for so long. Hopefully in a week or so, I'll be able to write that I'm all caught up and ready to tackle everything. HA! Those are lofty goals! Let's see if I can do it...

Last Post Before We Leave

Well, there seem to be no lasting effects from the head injury. I am going to try to get in with the pediatrician this week before we leave for China. I have been putting off the pediatrician visit until after her birthday, (which was just a little over a week ago). She had so much anxiety over going for her well check, I promised it would be after her birthday. Time has slipped away like it usually does. We will be gone until the end of the month, and this trip will be quite a challenge. We will be staying at a remote orphanage in a small village. It will be tough, but we will all come back better people after all this is over. If you had told me my life would take this turn 5 years ago I would have told you that you were crazy. As hard as my daughter's challenges have been, it has opened up my world. I have met so many wonderful people and special kids through it all. I hope we can continue to have others benefit from our trials. It makes it all worth it in the end.

Some More Details

One of the revelations from the optometrist was what he found about how she walks. She was very excited about the appointment, so when he asked her to walk to the end of the hall, she didn't walk calmly and straight. He asked if she always walked like that and I said no. Then he took her by the hand and walked with her and she walked on her toes!!!! She NEVER does this! I told him that but I'm not sure he believed me. I then told him that if she had the choice, she would RUN wherever she went. He answered that he wasn't surprised. He explained that the floor appeared to slant down for her, thus explaining why she would feel the need to run. When he told me this, I instantly had another horrible flashback. The pre-school didn't believe a word I said and re-traumatized her again and again, especially over running instead of walking. They thought they could teach her to behave the way they wanted and ignore her past. Her last school tried to make her walk slowly as well, they didn't see anxiety from past trauma as anything either. Now we have proof of a physical reason why she felt the need to run everywhere. Combine the physical with the emotional reasons, and it becomes overwhelming. It pains me a great deal that she had to go through that, and it's my fault for not being more demanding. It shouldn't be that way at all. You shouldn't have to walk on eggshells waiting for backlash on your child if you say too much. Why do people have to judge you and your child and why do they think it's their job to raise your child. I am not taking any chances with this new school, I am going to risk it and I won't hesitate to take her out. The only plus of all of this is that she loves to be around other kids. I remember wanting to protect my other kids and keep them home with me. I wanted them to be around other children. I tried to connect with a network with S for homeschool or just play, but haven't found enough people. We did just recently find a family with someone her age, and we seem very compatible.

Another very important point was affirmed at the optometrist. He didn't know very much about S other than the boxes you check on the form you fill out. We told him she was starting kindergarten in the fall and that she had already spent a year in school. He couldn't have agreed more that this was the right decision. I think my husband needed to hear that more than I did. I feel like we have everything in place to start off the right way this fall. Her vision is taken care of, her NR is pretty much finished, and she is in a better state emotionally. I have high hopes that this will be the best year for her. She just loves life and wants to do everything. She has been so happy since her injury. She was so sweet and charming at her eye appointment. She was so incredibly cooperative, and not one thing scared her. She was amazing. I wish the teachers and people that have judged us could see her now. Do they think we just taught her how to be this way overnight? She is doing all of the things we taught her all along the way as her body connects and matures and is READY to do the things she learned. It makes me sad to think of how many kids suffer emotional harm because they can't make their bodies do what they want. I don't think anyone enjoys being impulsive. Adults are impulsive all of the time with their words. How many times have you said something and wish you thought about the impact your words would have before you let them out? It doesn't feel good. Yet we hold little kids more accountable than adults, when they are too immature to control their impulsiveness. I love the do-over theory. This lets the child do what they should have, sparing their self esteem because they did something wrong. That is one thing that the school did last year, maybe they will keep it up for the other kids.

Developmental Optometrist

Our 2 day visit with the optometrist was worth going and spending our entire savings on, at least hope. He is putting her in glasses, of which she is so excited about. He uses a different approach than most vision therapists. He uses prisms, along with exercises. We will go back in 6 months or so for a re-eval. I knew she was having trouble with close up work, we found out that her eyes focus close up at different places, making her turn one eye off. She looks adorable in her glasses. Her sister went for an eval also, and he is doing something different with her. He designed a program that analyzes gait, and it is really amazing. He noticed things no one has before. He made a prototype of glasses for her to wear, and then re-did the analysis. It is amazing to see the difference in posture with the new glasses on. The body contorts itself to compensate for vision, not in a way you would readily notice, but obvious when pointed out. I learned a lot of new things this visit, and I think he can help both of the kids. I also think that with S's vision corrected, she will find school more pleasant.

I Never Want Another Day Like This In My Life

I don't even know if I can write this, it was the worst day of my life. My worst fear in life is losing one of my children. Not losing them in a store, but losing them to death. We were set to fly out Tuseday morning to CT for our vision exam. My husband had just gotten home from being out of town, and S was happy to see him. She asked him to play with her and he picked her up and was playfully tossing her on the couch. This is something she loves, and she was giggling happily. Suddenly, I see him get up with her in his arms. I can't remember if he was calling her name, but she was in a strange position like she was sleeping. I ran over to them asking what was the matter. I first thought she could be choking on something, then I noticed her eyes were not looking at anything and she wasn't responding. I ran to dial 911, not realizing what was happening, but knew it didn't look good. My husband was operating in panic mode, not being able to answer me, but was able to answer yes to dialing 911. He just kept walking with her, walking away. I was yelling to him, asking if she was breathing, all the while in a panic that I was on a corded phone and couldn't run after them to be with her. My 18 year old daughter came running when she realized something was happening. They determined she was breathing, but she was not responding to them. The phone seemed to ring forever, I was upset that the emergency line could ring 10 times without someone answering. The first thing they ask is your full address without even knowing what you need. She did let me know after I told her what was wrong that an ambulance was on the way. During this time, they got her to respond and she was answering what her name was, etc. I knew she was going to the hospital, so I ran upstairs to get some clothing on that would make me presentable, especially if I needed to be there for a while. Thinking back, I must have been in panic mode too, I should have gone to her instead of worrying about being seen in clothing that looked like PJ's. I was back in a flash, well before the ambulance arrived. She was so scared, and she was able to tell me she was afraid of being away from me forever. I didn't know if they would let me be in the ambulance with her, so I told her ahead of time that if that were to happen, I would follow the ambulance in the car and be right there. The paramedics were very nice, and didn't seem too concerned. They couldn't guarantee me she was okay. One of them asked for her to squeeze his hand and she had no grip with the left, but held on a little with her right. It may have been because she was scared, but I didn't want to take any chances. They couldn't tell me either way if she should be checked out, even they didn't really even examine her. Any child who loses consciousness, even briefly, should be checked out. They made me feel like a hypocondriac for deciding to go to the hospital, but I didn't care. They said I could ride with her in the ambulance, so we decided to do that. I was so afraid of something happening on the way if we went in the car. It is about 25 minutes to the hospital, so I wasn't taking chances. The ER doctor did a minimal exam, and suggested that she may even have had a seizure because she stiffened up after she lost consciousness. My husband recounted the events leading up to this. He dropped her on her bottom to the couch, and her head fell forward, almost like whiplash. I think she was already out and that her head fell forward as a result. He thinks her head flopping forward was what did it. It was just a freak accident. S's version of it was that daddy "threw" her on the couch. I thought for sure we would have a social worker in there investigating based on her wording of the incident. When my older daughter broke her finger years ago, they grilled both of us over and over for the story. The intake people, X-ray, docotrs, nurses. It took like the third time of asking for me to figure out what they were fishing for. I am so happy that this time, they could see that we were caring parents and that there was no chance that this was intentional. I have never been more scared of losing her, it was horrible. I am so grateful for the young ER doctor and nurses who were so nice and careful about not traumatizing her. She left there and said, "That was fun at the hospital!" That was the best thing to come out of this whole ordeal, she won't be afraid if she needs to go to the ER again, or even ride in an ambulance. The doctor said we would probably be okay to fly out the next day, we should just watch her carefully over the ext 24 hours. We decided to go ahead and fly, since she was back to normal so soon after the incident. It was a sleepless night, constantly checking if she was still breathing. Thank GOD she was okay, I am so grateful for every minute I have with her.

Some More Good Stuff

Today we started VBS for the week. There was a little anxiety about it because she knew it was at her new school. She's not thrilled with the idea of changing schools, but I know it will be a better place for her. Last night I asked her if she was nervous or scared about anything and she said no. This morning she was bouncing all over the place excited to leave. We got there and all seemed well. I stood nearby while all of the children arrived. They do some songs with the entire group and then split off into smaller groups. I saw her standing there with a dazed look on her face. I scanned my memory to make sure I told her I would be back to pick her up and that she knew how things would unfold. She stood there with her deer in the headlights look until they were done. I was very worried. I went up to her right before they started to go to the smaller groups. I asked if she was okay and she said she was. Then she asked me why I came back. I told her I never left and I wanted to stay to make sure she was okay. I arrived about 40 minutes early to pick her up. I watched as they gathered together once again and they played the songs. I walked around front to get a better look and there she was, in front, dancing away to the music, doing the hand motions with everyone else. What a thrill it was to see her! Then they did a few more things on the stage in front of the kids. This next thing was completely unexpected. They used her most feared siht and sound, a big motor/fan to inflate something on the stage. This ordinarily would have sent her into a panic and her hands over her ears. It was the surprise factor that I suspect would have had the most impact at this stage. She was absolutely fine! Other than her food issues, she is so much like every other kid, and I couldn't be more thrilled.

Today I was......

savoring the sweetness of success. It just occurred to me that yesterday was a big milestone. We went to see a movie at the theater. For the past couple of years, she has covered her ears because the volume was too much for her. So much scared her in the content of a rated G movie. Sadly, she was watching My Little Pony with her sister, a show she loves. They got to a scene where there were babies in a hospital and she made her sister turn it off. We have much to be thankful for though, the theater movie was a complete success. It was fun to see her even 'get' some of the humor and hear her laugh. Today we went to the grocery store. I remember the days when that was a nightmare. She would try to just run off, not caring about being away from me or out of my sight. She would go around touching everything. She still likes to touch, but now she will listen. She is so polite and says, "Thank you mommy." and "I'm sorry mommy." She is kind, she is considerate, and she is happy. The biggest thing that happened at the store was that she stayed back to get on the big scale. I noticed a second later that she wasn't next to me or right behind me, but I saw where she was going. I kept walking through the door but could still see her just a few feet away. She got down from the scale and the automatic doors started closing on her. She jumped back until they started opening again. SHE SENSED DANGER!!!! This is a big step for her, this has been very slow in coming. She has been very aware of danger lately. When we were crossing the street to go into the store she explained to me why she needed to watch out for cars. I'm not so distanced from the way things were not to appreciate the way things ARE.

Last week we were with a little friend who got hurt. She was screaming loudly and crying. S got far away from her and covered her ears. After a few minutes, she slowly walked closer and gently put her hand on her friend's arm. She stepped back, and then came back to her about a minute later and did the smae thing. That was a very big thing for her, her compassion overpowered her fear. I am so proud of her. We have more mountains to climb, but we have all the gear we need to climb them. Slowly but surely, we will get to the top.

Summer News

I can't remember if I wrote about this yet or not, but S developed a throat clearing habit the last couple weeks of school. This happened once before, she was sick and had to clear her throat. It developed into a habit that lasted several weeks. This time, it could have started because she had some mild illness, but it continued because of stress. The teachers said they noticed it alot and it was more frequent when she was stressed. She has been out of school for one week. It has decreased in intensity, but at times is more frequent. She was really making a big sound in the beginning, and I think it probably irritated her throat. She most likely really needs to clear it now. It drives me crazy to hear her do this, and sometimes I tell her to stop. I know I have to back off, because my reaction is only adding to the problem. I wish I could be the perfect, always calm and sedate mom, but I can't. I try hard each and every day to improve on my own shortcomings, and each day I fall short on perfection. I just hope it's good enough. I have much more patience than I did years ago, but it's never enough. Our home life is different with no school and her big sisters in and out of the house. One is taking classes away from home and only comes home every once in a while, the other is taking summer classes near home, so she is living home. S just can't wrap her head around the fact that they are out of school for the year, but are now in class for the summer. We will probably go to China for about 3 weeks in July. This is something she is really looking forward to. We are working on eating a bigger variety of food to make the trip easier. Trips to China are never easy, but needing to take 3/4 of the food she will eat in a suitcase further complicate things. We are going to be doing charity work there, so it's important that we make this trip. We are not going for a vacation. As hard as the trip is on her, she really does so well and always has so much personal growth.

We decided for sure on the new school in the fall. She will go to their vacation bible school in a couple of weeks so she will be familiar with the school. I think this will help a great deal. I am really looking forward to this next school year. I am looking forward to being a part of her school experience like I was with the other kids. I really feel like we were both cheated out of a lot this past year. That is why I'm glad we are starting in K again this year. It will be like starting over.

Since we haven't had a schedule, S has been talking non-stop and asking constant questions. I know it's because she is nervous, but it is so hard. This morning, she asked to go upstairs and do some creeping. I think she misses the routine and the special time together. We will do that whether we need to or not. I think that is such a big step for her to ask.

In the Beginning......continued....

I was remembering some other things about the beginning of our journey. I remember that going to a store was a nightmare. She screamed when I tried to put her in a cart, refused to hold my hand if I put her down, so I had to hold her with one arm and push the cart with the other. She would just run off and never look back. She wouldn't respond if I called to her, nor would she ever sense any danger. It didn't matter what tone of voice I used with her, she didn't respond to any of it. She couldn't be coerced or bribed, she just did her own thing. For so long, I just thought she didn't understand. There was a lot that she didn't understand, but there was also a lot that she just held in until it was safe. It's easy to look back and see things now, but when we were deep into it, we couldn't tell. I remember that she was so busy, so wild and crazy, that her big sisters didn't feel they could take care of her if I had to do something. They were exhausted after a few minutes. When I would go upstairs to take a shower or do something, I would come back and they would say they were watching her for HOURS. Some of this was just them being dramatic, but there was no doubt that it was hours worth of effort. She just never quite fit the criteria for diagnosing a particular problem. Now the picture is much clearer and attachment is at the forefront. We had a final conference with the teachers yesterday. They did not see any area that she was having trouble with or might have trouble with. I am confident with my decision to repeat kindergarten. She needs confidence in her abilities and the emotional tools to be able to handle anything more advanced. I compare her life to racing in a marathon. She was in training, and it didn't look like she would be equipped to start the race. At the last minute, it looked like she could do it. We strapped her running shoes on and ran to get her to the starting line. She had a great start, and it looked like she would finish without a problem. But then her shoe came untied, then she twisted her ankle but she was still running at a good speed and acting like there was nothing wrong. Everyone wants her to keep going, their goal is the finish line, it doesn't matter what condition she is in when she crosses it, the point it that she is CAPABLE of getting to the finish line. I want her to pace herself so she crosses the finish line strong and ready for the next race, not exhausted, injured, and never wanting to run another race in her life. She can drop out of this race and enter a new one. She will enter this next race totally prepared and conditioned. She will cross the finish line with confidence and strength, maybe she'll even win the race. She will feel accomplished and confident when it's over, and ready to tackle whatever comes next. She won't be repeating a grade, she'll just be starting this next race prepared to win.

Endings

These last few weeks have been terribly busy. We have been slackers with NR. Our routine has been so disrupted, it has been impossible to be consistent. Some days have me wanting to be totally uninvolved in anything outside the confines of my house. I realize that is quite impossible, because the reason we do all that we do is because of the kids and on their behalf. Today is the last day of school for S, she seems to be doing okay. I worry about the last hour or so, when they say goodbyes and she realizes that this is an ending. She has such anxiety over endings, to her they signify a loss. No one can quite understand how she feels. That's okay, I just wish they would try. I wish they could see that she is trying her hardest to not let her feelings show. That showing any outward sign makes her vulnerable beyond what she can handle. When I attempt to explain it, I get sympathy, for her and for me. We don't need that, we need someone to listen AND understand. Right now, we are coping and it is working out just fine. I hope her healing can advance over the summer to give her the skills, trust and confidence to make it through whatever next school year brings. I plan to do the full Ils program over the summer. We also have an appointment with a new vision therapist in another state. I have spoken with him personally, and it seems that he offers a different approach. It will be hugely expensive, but we have to do it. We will also incorporate our NR into our routine. Our new patterns involve using the eyes, and it's very difficult for her. Maybe after we see the vision therapist, he can offer some advice.