Disney

We had a great trip to Disney World this past weekend. Rides that S was formerly afraid of-she wasn't afraid anymore. Each of her 3 older sisters wanted a turn to sit with her on a ride because they wanted to see her enjoy it. They are so thrilled and proud big sisters, they share in our joy at seeing their sister overcome her obstacles. I've been trying to think of a list of things to discuss with Bette, and I am thankfully coming up short!!! How exciting is that? We went to a new OT last week and I was pleasantly surprised that she seemed to "get it!" I didn't like how she wasn't sensitive to saying negative things about S in front of her, but I willl have time to tell her that I prefer not to say things in front of her. She is 4 1/2 and knows exactly what is being said. We're re-visiting OT because I wanted a new eval to see where we still needed work. The only thing I want to work on is self-regulation. The only place we are really seeing this is with pre-school where she is with a lot of activity and other children. When she is at the park, she plays beautifully with other children. She used to be right up in their face and invade their personal space. That's not really an issue anymore. We still have sensitivity to sound, but she is really good at covering her ears. We are doing well with potty training, I still don't know if there is a physical reason that it is taking so long. I accepted long ago that she is on her own timetable and that I am just going to enjoy the ride rather than wonder when we're are getting off the ride. Of course I would love someone to tell me the endpoint, but who can complain when their child is pure joy. I have dealt with so many things with my daughter, and our entire family is totally immersed in this because families experience everything together, good and bad. I am so grateful for what I'm not dealing with. We have never had a sleep issues or rages. We don't have manipulation or controlling behavior. When people say God never gives you more than you can handle, isn't that the truth? I never expected this journey, but I am a better person for it. It has taught me more patience, more compassion, more understanding, less judging, and gratitude. I hope I can assist others through our trials. I wrote on the Neuro-network group today about 'lasts' being more important than 'firsts." I am so happy I read about the lasts when my older children were still young. The hardest last has been when then turn mommy into mom. Since I have 3 children older than S, she calls me 'mom'. I told her, "I'm mommy to you little one!" My almost 20 year old will still call me mommy on occasion. I think the lasts for our kids who struggle are very important. The last time that S covers her ears when fireworks go off will be a reason to celebrate. The last time she asks me to carry her up the stairs will be a huge reason to celebrate. My aching knees will be happy! Last week at Chinese class, she said to me, "I'll go get the snack myself!" This was a huge deal since we were in an auditorium type room on a college campus and the snacks were as far away as you can get from where we were. She always surprises me with the things she wants to do. I have been in such a protective mode with her, I know I don't give her all of the opportunities that I should. I think since she's my 4th child, I just have no pressure for her to meet traditional milestones. I love to see her with other children her age now because the gap is closing between them. I wish I could see into the future to know if she will eventually be like her same age children.

While I write this, she has been beside me. She loves to play with cars and she turns them on their side to show that they are sleeping. She said to me, "Look at the Z's coming out." She calls the ZZZZ's 'symbols' to show they are sleeping. I think I wrote about this earlier when she first said it, but I will tell you again just in case I didn't write it before. I asked her what the letter Z was for(meaning the sound) and instead of telling me the sound she said, "Z is for snoring" Ahh, the benefit of reading.

The OT said since she was so attuned to sound, she was probably more of a visual learner. This OT is very observant, I can't wait to see how she can help us. We will go weekly for a while and see if it helps. She said she will work closely with the teacher, which is very exciting. Maybe if the teacher hears it from an OT, she will belive it. Sometimes she wants to treat S like any other kid, I'm not sure if it's because she thinks she can help any child, or she doesn't quite buy the SID reason for behavior.

That's all for now, we go for our re-eval next week. I can't wait.

2011

2011 is off to a good start. Hopefully 2011 will also see the end of NR. I think we are just doing some fiune tuning now, as I don't have a huge list that I go through at each re-eval. I've been composing our graduation post to the group, since I want it concise but all inclusive. A bit premature you may be thinking, but I think it's important to remember all the progress we've made. It's been hard to convince people that the NR is reponsible since we started so young. S would be advancing and progressing no matter what. I think that attachment had a lot to do with her holding back. The other day she told me something that happened a year ago. She remembered the sequence of events. From what I remember, I wasn't even sure what she could comprehend at that point. She had us all fooled. I had thought that could be a possibility all along, because she would never let on that she knew anything. That was actually a pretty clever method of self protection. Now that she is feeling safer, she is willing to open up and reciprocate with conversation. She always talked a lot, but it was just monologue or asking questions or making comments about something. She would still prefer not to answer direct questions. I still think there could be auditory processing problems going on. Sometimes I have to rephrase things to get an answer. Is it my presistence that gets her to answer, or is it the different presentation that makes her answer. She is going through some speech 'difficulties' right now. Difficulties isn't the right word, but I'm not sure what to call it. She'll repeat a word over and over in a sentence because it seems like she can't speak as fast as her brain is producing words. She'll say, "Can I, can I, can I, and then what she wants. It's not stuttering, because she can form the word, it's just she can't get it all out fast enough. Not long ago, she would just repeat your question when you asked it. Now we get answers. She is very guarded, especially emotionally. She is most sensitive to her 13 year old sister. If M doesn't want her in the room or rejects her in any way, she comes out complaining and saying that her feelings are hurt. She's pretty much the only person who can make her cry. The one remarkable thing that is now effective is punnishment or threat of punnishment. Consequenses never worked before. You could take away all of her possesions or threaten anything and it had no meaning to her. Now, I can ask her if she wants to go in time out and she'll usually do what I want. She is also very concerned if I am happy or not. She wants to make sure I'm happy all of the time. I can also tell her she'll make me sad and she'll comply with the request. I don't use it often because this probably has some detrimental effect on attachment. We go back for another re-eval in a few weeks. Hopefully we'll get an endpoint by that time. I need that to keep going.

It's the End of 2010

This past year has been one of positive progress. We have made huge leaps in development, mostly becuse of age, partly due to NR. Since she is so young, we are going to make a huge amount of developmental progress anyway, but I truly believe that NR helps unlock the potential for maximum growth. I just wish I was able to stay as faithful to the program as I would like to. It will be 2 years in February, and we should be close to finished. I doubt that we are because of our lapses. I did the best I could, and vow to be better disciplined this next year. Since she is getting older, I feel like I can get her to cooperate more. Her language skills now let me know that she understands, so I can have the confidence she knows what I am explaining. Last night, she move her legs herself for her tonic neck reflex pattern. If she can keep this up, I won't need a partner, which has been my biggest roadblock. It was a huge risk putting her in preschool, but it has been mostly positive. It has been huge for attachment, which has led to better cooperation. She communicates better with children and adults. Unfortunately, being with other children overstimulates her, so she can be a wild maniac and appear to be a huge discipline problem. Her teacher is very kind and patient, and will let her sit in another part of the room and read if she needs a break. There are several children with behavior problems in her class, which is difficult because she mimics other children, no matter what they do-good or bad.

One major milestone last month was when I heard her say, "Mom! Look at me!!!" To most moms, this is something they hear multiple times a day for as long as they can remember. For me, this was huge because she actually cared enough to want me to look at something she did. Not that she didn't care about me, but with a child who struggles with attachment, saying something like that is really going out on a limb. We have almost normal eye contact now, something we were still working on at the start of the year. Anxiety is still an issue, but less so. Self regulation is still number one. The minute she gets to school, she'll dart to whatever she is interested in and her hands are on it, even if someone else has it. She knows to ask, but usually will only do so if you stop her before she can grab or touch. She does much better at home with regulation because she isn't overstimulated. She loves to draw, and she amazes me at her ability to copy what someone else draws. Her fine motor skills are really great when using a pen, but she has a hard time with scissors.

I was beyond excited this year when she was totally into making and decorating cookies with me. I never thought she would have the patience and skills to be able to do it. She asked for my help a little, but did it mostly by herself.

There was a day not so long ago when she wouldn't touch play dough, now she loves it. She is eating more solid food, but no fruits or vegetables. She still gets fruits, vegs, and meat through baby food in the bottle with milk. Although this isn't the preferred method, I'll bet she is getting a better variety of food than most any child her age. We're on a waiting list for an OT who is supposed to specialize in sensory. I'm hoping that she can help with the eating issues. She usually eats the snack at preschool, which is always something like chex mix, goldfish, or some cracker like food. She drinks small quantities of water from a cup. She is someone who loves her routine, so I need to force the issue a little more at home. I had originally planned to change to 5 day a week preschool in January, but I don't think I am going to do that.

I'm really pleased with our progress this year. We go for our re-eval in February, so we'll see where we stand. I'm hoping we are close to finishing, although I doubt we are. Seeing the finish line will certainly motivate me to work as hard as I can. As much as I don't advocate the slow method like we are doing, I do hope that we can encourage people who think they need to quit because they can't get the program done everyday. Every bit helps, and something is always better than nothing.

Some Little Things

One morning recently, I was doing something in the kitchen and making some noise. S was saying something to me and I asked her, "What?" I should have stopped what I was doing, but didn't and I still didn't hear what she said. So after her saying it 2 more times, I stopped what I was doing, got closer to her and asked again. She said loudly, "I LOVE YOU!" Oh my gosh, did you just say that? I have heard that so few times, and to think she would still say it after having to yell it for the 3rd time. Of course I swooped her up and gave her a huge hug. Another time just a few days later, I was buckling her in her car seat and she said, "I'm so glad you're here with me." Wow! These are gigantic breakthroughs for us.

The other day we were at a park and she played so nicely with a little boy her age. They played harmoniously for 3 hours!!! She does so well one on one, or even with a few kids. I've been told by her teacher that she has lost control in the classroom. This makes me really sad because it's not her nature to act out. She must be at sensory overload. The teacher is very low key, but the rest of the class is not. There is no time out, but I worry about self esteem. She may not be saying things to S, but S is clearly getting the message that she is naughty. It's just so hard to trust other people with your child. They can be great for them, but they can also so a lot of damage without you knowing what is going on. She has been sick this entire week, so I haven't discussed it with the teacher since she came home announcing she was naughty and bad. The teacher said she had a bad day, but that's all I know.

Since she is never sick, we don't ever need to give her medicine. Because of her oral sensitivities, the only time we've even had to give her fever reducer by mouth was when she first came home. It immediately gagged her and she threw it up. We had to wait and disguise it in a bottle of formula. A few days ago, we needed to give her some liquid ibuprofin. We gently put in into her mouth with a syringe and much to our surprise, she sawllowed it without a fight!!! For a kid who doesn't eat anything and still uses a bottle, this is an amazing leap for her. On the food note, she really wants to drink out of a juice box. She sees her friends doing it, and she tries so hard, but she just can't bring herself to do it. The good think is that she wants to eat and drink, so someday we know she will. She asks for food she doesn't eat. She asks for french fries, which she's eaten a few time. If she asks when I'm out, I've gotten them for her a few times. She will sometimes eat a few, but she mostly like to just hold the package. We have to start somewhere! That's all for now, we've been off the program for a week now because she's been too sick to do anything. Can't wait to get back to normal. I guess the good thing about illness is that it always strengthens our bond. She needed a chest x-ray yesterday and she did exactly what the lady told her to. Just 6 months ago, she would have been scared to death and not complied. Our progress is slow, but progress just the same. We will be around family for Thanksgiving and I'm stressing that there will be comments made. I'm trying to arm myself, but I'm usaually in such shock that I'm left speechless. Hopefully all the worry is for nothing.

November 5, 2010

I wish I had time to write daily, because there are so many little changes that I just forget about. There were some pretty profound things happening when we first started our new program. We are concentrating on the tonic neck pattern because part of the impulsivity is because the two hemispheres of the brain are not communicating. I picture it like the cartoon where the angel is on one shoulder and the devil is on the other. Sometimes the one side wins, sometimes the other. The problem is, I really think she knows when she can't control it and feels badly after. She doesn't express emotion well, so I can't tell what is going on inside. She appears happy, very very happy, almost all of the time. I know she is hiding feelings, but part of me wants to believe she is just a happy girl. One time her sister instinctively slapped her hand when S hit at her or did something to hurt her. Her feelings were so hurt. She cried for a length of time. She was also very sleepy, and fell asleep in the car, crying up until the moment she went to sleep. She wasn't at all physically hurt, but she was upset with her sister for doing that. She shows frustration, and will act out when she feels that way. I don't think I've ever really seen sadness.

Another huge change is her eye alignment. I've noticed in pictures that her eyes are more often aligned. I'm so excited about this!!! I took some pictures of her today, and they look so much better. One day, when we were dropping off at pre-school, I had just been talking about asking permission to hug or touch someone. She went to hug a little girl and then stopped herself with her arms outstretched and almost touching the girl. She asked if she could hug and the girl nodded permission, only to shove her away as soon as she gave her the hug. The was a huge step for her. I'm not sure her teacher believes she fits the profile of a sensory dysfunctioned child, but she is kind to her. I gave the teacher some articles and she is implementing some of the suggestions into the classroom and into the routine. She said she could see how some of the other children could benefit from this. Hooray!!! Maybe this atmosphere will compliment our therapy and we will get the most out of it.

I have to tell you about our attachment progress. The love story is unfolding in such a beautiful way. How wonderful that I get to experience this with her, when other moms just take it for granted that their child will love and trust them. I've noticed that when I read to her or am close to her, she will just rest her little hand on my arm. She is so excited to see me when I pick her up from pre-school. Today, we were in a store, and I was a few feet from her but I was out of her sight. She called, "Mom?" and I answered and was immediately next to her. She reached over and held my hand. This is so huge, because she hates to have to hold my hand when we are out. She was forced to do it this summer when we were in China. She decided she didn't want to be in her stroller, so I told her she had to hold my hand. she took the least of two evils, but hated it. She has never held onto our hand, always preferring to be independent and walk next to us. I'm sure this was a control issue. That's what makes today's experience so wonderful, she chose to do it.

October re-eval

We just had our re-evaluation and got a new plan. We're going to work through this, even though it won't be easy. I only have one pattern that I need someone to help me with, so the program is do-able. It's really hard to have people in the house, but no one to help. S has started pre-school, and overall things are going well. She has never been anxiously attached, so she had no problem leaving me. One thing she said shocked me. She obsessed about me comiing to get her. I don't know if the teachers mentioned it when it was time to leave. I think she wanted to stay on the playground, because that's the last place they go before it's time to leave. She also talked a lot about saying goodbye to the other children, she didn't like doing that. The second or third day of school, she almost started crying on the way home. this is significant, because almost nothing makes her cry. She said she didn't want to say goodbye to the other kids. I'm so happy it was just that, I immediately thought something horrible had happened to her. They are talking about feelings in school, which is really great. S doesn't express feelings at all. I have been working on labeling feelings for her. It hadn't occured to me that she is pretty even tempered. That would appear to be a blessing, but it makes me wonder what she is internalizing. I finally made her a scrapbook of her life before we adopted her, so I'm hoping she'll be able to express some feelings. She says the cutest thing to me now, I think she got it from a book we read. She says, "Mommy and S hug and make a heart shape, right?" Doesn't that bring up such a wonderful visual? I look forward to sharing our progress, hopefully on a more regular basis. The biggest thing we are working on is impulse regulation.

Back in town and NOT with the program!

Okay, so we're slackers, what can I say. Vacation is over, school has begun, and the need for NR is glaring. I am dreading getting started again, and looking forward to it at the same time. I think the biggest thing we need to work on is impulsive behavior. S wants to do the right thing, but acts before she thinks. She started pre-school about 6 weeks ago and we love her teacher. She is very understanding and handles the impulsive situations very well. My biggest concern is how it's all handled at school. The teacher is so nice and calm, and seems to understand that S means well and isn't aggressive, but her lack of pre-thought process can look like she wants to be mean. When you watch her do something, you can see that it done for a reaction, not to hurt anyone. We're going to stick with it for now, and hope things get better once NR is re-introduced. This post needs to be brief, I'll check back in and report our re-eval results.

Last Update for a Month or Two

We will be leaving for vacation in a couple of weeks for a while, so I won't be updating. We will go for a re-eval in the fall, and I'm really excited to get a new routine. We've also made an appt. with a developmental optometrist to see if S needs vision therapy. Her eyes do not work together, and one or the other turns outward. The good news is that I've read that turning outward is better than inward.

Yesterday was the most amazing day. I was having a discussion with S's sister and she started to get upset. She was talking to me and half crying. S heard this from the other room, came over to her sister, and started to comfort her. It wasn't just a pat on the back and walk away thing either. She asked her what was wrong, then assured her it would be okay. After that, she went and got a game we all play together(bananagrams), took the letters out for her, and pretended to play with her. It was so amazing to see her 'get it' and go through so much to make her feel better. What she did was cute and also very effective to re-set the mood to a pleasant one. This was such a big step for her.

A couple of weeks ago, she tried a vacation bible school where one of her sisters was able to be with her the entire time. By day 3, she was overwhelmed, and didn't want to go. I went with her the next day since she came home early the day before. The noise level was too high for her, and the amazing thing is that she was able to tell me that. The 4 day was a 'performance' type thing, and she was clinging to me. My daughter suggested is would be good for her to just leave me to go with her and just face her fears. My husband came over and agreed with this suggestion. I refused, knowing full well that that was not a good idea. I stayed with her until she was comfortable, and she was fine, even with the noise. I am fully convinced that she understood this compassion, that's how she was able to show compassion towards her sister. Yes, she has to face her fears, it's the only way she'll do anything. I have gently coerce her to try new things. Sometimes she ends up clinging tighter, other times she ends up loving it. She is hesitant to try new things, she fears new situations. I know how hard to push her without betraying her trust. This is the key issue-trust.

Overall, she is doing great. We have a lot of work to be done, but we are at a good place. We have had no adverse reactions to fetals, the only thing we are doing now. Last time we started them, we had immediate sleep problems and an unpleasant disposition. I think there has been a lot of improvement with the increase in communication. We are about to go back to the orphanage where S came from. This is very early to go back, but I think it will be very good for her. We may have some horrible regression, and I hope we don't go too far backward. Even if we do, I think it will have positive results in the long run. I fear the worst, but I'm not expecting it. My feelings are that she is too young to comprehend the big picture, but it might be just enough to settle some feelings that she doesn't remember the origin of. I think since adoption was so traumatic for her, that she will be able to replace those bad, fearful feelings with the present circumstances. Meaning- what initially traumatized her can be re-lived and replaced with the comfort she has today with her new home. A psychologist might totally throw that idea out the window, but I feel that I know my daughter well enough to not be putting her at risk for something bad. We can communicate now, so if there is something that she wants to talk about concerning the orphanage, then she is young enough for memories to come back and discuss them. Maybe she will be able to put the past trauma behind her since she will be able to sort out the mystery of it all this early. I think she has some memory, even if it's not something she can express in words. I think going back might trigger some sort of conscious memory, but this time, she won't be leaving the orphanage to be with another family. I see it like getting back on the horse, it's hard to do, but you have to realize that it won't be that bad again. The old experience will be replaced by a good one. We'll see, I'll be sure to write about it when we get back. That's all for now, I need to get packing.

May Update

We're back into our NR routine. Unfortunately, we won't be able to go back for a re-eval in May bacause we'll be out of town for a graduation. On a general note, we've made huge leaps in development. Speech is very clear, and we're in complete sentences with proper grammar most of the time. Fine motor skills are hugely improving. There is still quite a contrast when she is with other kids her age. She plays really well with other children, but they realize she is different and it is beyond heartbreaking. She is the sweetest, most friendly, loving, kind child you could ever meet. It makes me wonder how many misunderstood children are never appreciated. I wish I had the time to write a book about my life with her. I am so priviledged to have been chosen to be her mother. She makes me see life in a different light, and I appreciate every day more because of her. I want to protect her from hurt, but at the same time, I want her to interact with the same people who could break her heart. They have so much to learn from her and enjoy. If only I could find people who would actually listen instead of thinking they already knew what you were going to say. If only they were willing to learn instead of being prideful. Maybe someday, she will be able to make people listen, and my job is to get her to that point.

The same day we started back to NR, S played quietly by herself in her room. I didn't think too much about it, since she is maturing, it could just be becasue of that. Then on day 2, the same thing. Surely not a coincidence, never is with NR. Am I looking for it? Actually no, I usually don't put the 2 together until a day or 2 later. We are doing fetals, which we had to stop the first time they were prescribed a year ago. I was afraid of re-starting them, but this must be the right time. Last night, she woke up wimpering. She has always been a sound sleeper, so this was unusual. I brought her to my bed, and she spent an hour thrashing around. She kept kicking her dad in the head, and keeping me awake, so I brought her back to her bed and lied down next to her.(in her toddler bed) She was still restless, and she didn't want me to touch her to comfort her. She is still resistant to touch as comfort. I finally rolled her onto my chest, with intentions of eventually getting up and doing something else with her. Well, much to my surprise, the second she got on my chest, her body immediately relaxed, and she was asleep within minutes. Only then did it occur to me that this all must have been in reaction to the fetals. Of course, I felt guilt at probably handling it improperly up until that point. When you are getting kicked and hit and woken up repeatedly, you generally don't react with compassion. I kept trying to re-align her so she wasn't perpendicular to her dad and I. In a half sleep state, I probably even told her to stay still. Now that I realize what is going on, I'll try to remind myself to react with compassion. As we get farther into out NR routine, she is pulling the same old stuff, playing around and not wanting to do it. How can you do patterns when your child gets stiff just because it's fun? Or how about rolling over and giggling? She's not making this easy on either one of us. Sometimes I think it would be easier when she is older, because I can reason with her. But if I wait, she may just become more unreasonable and defiant. So in the next 3 months I have lofty goals-potty training, swimming, and getting ready for some sort of pre-school. I'll be here all of next month, so hopefully I'll post more often. I have high hopes, lets see how far we get!

March 2010

I can't believe it's almost halfway through March. I am embarassed to say that we have totally neglected NR work for weeks. There has been so much going on and constant changes to our schedule. S is nevertheless making progress. She is talking up a storm and it's so much fun to hear her. She asks amazing questions, but I noticed she does not talk much about feelings, only things and concepts. We just got back from a trip where we had to fly to get there. We hadn't been on an airplane since September, so I knew there would be anxiety. The first flight was only a little over an hour, and she buried her head in my neck the whole way. The next flight was 4 hours and she was just fine. We stayed with friends who have a daughter her age. They played and played and talked and had so much fun. Our 3rd and last day, all of the activity and changes took their toll, and her anxiety increased. When she is anxious, she gets very repetitive with her speech. When she is scared, she'll repeat what I have said to her to keep her calm. She goes through the sequence, "It's okay, it's okay, I'll keep you safe, I'll protect you" and she'll say it over and over. If it's something brief or stationary that scares her, and I tell her it's gone, she'll repeat, "It's gone, it's gone" It's frustrating for me to hear her repeating the same thing over and over again, but I know it's comforting for her. I hate that she has so much anxiety. The good thing is that she can and has conquered so much of it already. At gymnastics class, she now will attempt everything there. She crawled through a tunnel without hesitation last week and this week. Way back in the days of OT, it took almost an hour to get her to peek her head into the entrance of a tunnel. I don't think she ever went all the way through in all of our time there. I'm encouraged that time will work all of this out. Repeated, safe exposures to the scary situations and objects will eventually have her feeling safe. Unfortunately, I'm not sure she's ready for a preschool environment. My other kids were very shy, and I found well meaning teachers to be very cold in their approach and thought that thrusting them into a situation would make them not shy anymore. It just made them not trust their teacher and be scared to death of the next moment that their teacher would do that again. No school situation should have the child living in fear and anticipation of the next anxietly provoking moment. I lived most of my school years with that anxiety. The fear of being called on was the worst. I would have so much anxiety the entire class with a teacher that I knew called on people randomly. I'm betting those were not my best subjects. My one wish would be for teachers to respect where they don't understand. I think you have to live through something to understand it completely, but if you haven't lived it, try to trust that the parent really knows their child better than you do. Yes, you can see how kids manipulate their parents and want to show them you won't put up with that. I just wish it were possible to see each kid for who they are instead of throwing them into a category. That's the biggest issue with getting S the help she needs. I was told by someone in the school system that they would have force fed S. Their big concern was that she was way behind because she had no self feeding skills. It's not that she couldn't hold a untensil and bring it to her mouth, she just couldn't tolerate what was on the utensil. I felt like my words meant nothing. I can still hear how they were telling me that they could offer so much more(their words) and that they had decided I was an incompetent parent who couldn't even teach my child how to eat(my words)! Okay, I got off on a big tangent. I plan to make a schedule for our NR and hopefully have a good report in a week. We need to start fetals, so I'm a little nervous.