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.

February re-evaluation

We had our February re-evaluation a couple of weeks ago. We're making progress, but our progress is only as good as our effort. S has gotten quite resistant to doing anything, so we're trying to employ another method. Our movements have changed this time around, we're going back to the fetals which stirred things up so much last time that we put them off. S is such a sound sleeper, and doing fetals disrupted that. But, I know we need to move on, so we'll try it once again. We plan to return to China in just a matter of months now, so we need to work through some of this early stuff to be able to have a successful trip. I honestly think that this is a really good time to return to the orphanage, because we are at a point where she is much farther along in the aqttachment process, and I think this trip could help her sort things out. I have not shown her pictures of her nanny or of the orphanage. I want to see if she is able to remember any of this on her own so I know it's from her memory and not from what she has pieced together from pictures and stories. I know from my older children how thier minds work. When you explain something to them, they can only relate to it and process it based on their limited exposure to the world. I can even see this in my teenagers. They tend to not believe that things aren't how they see it. It's not because they don't believe you, they just don't have the life experience to see the bigger picture. So that makes me very hesitant to give her too much information before we go back.

I'm happy to report that the little fearful sounding outburst she used to make has disappeared. I have to admit, I was really nervous about this. I think something new is coming up to replace this, but this time I'm not so worried because the last one was so short lived. We're having bigger problems with her bed. She's still " 'fraid bed". Nap time is pretty much gone, unless we're in the car and she falls asleep. At night, I'm able to rock her, and either put her in her bed awake or sleeping. She doesn't say anything about being afraid when I go get her in the morning. I am loving being able to rock her though, I never thought I would see that day that she let me and even enjoyed it. She is very talkative and tells me about what she did that day. She spent quite a bit of time with her 3 cousins these past 2 weeks, it was a huge leap in personal growth for her. Her eating is getting so much better. We're still using a bottle, but there are more solids. She even ate some of a banana, which is a huge step in sensory! A banana is about the worst texture to have in your mouth. She wants to use a cupo so badly, she pretends all of the time, but she just can't quite get the nerve to do it. Potty training is not happening. I did put her in underwear yesterday and she showed me where the puddle was on the floor. Progress? I had to get her up while she was still sleeping yesterday and I niticed that her diaper had only a small amount in it. This was the way I could tell my other kids were ready for potty training. So now that I know that she can hold it most of the night, I am going to attempt to train her.

Yesterday I overheard her talking to herslef and saying, "Good girl, you did it!" and then "Try again". She'll say that to me when I do something she wants me to do. She likes to try to have me do some of the things I have her do and then praise me for doing it. The other day I helped her put her shoes and socks on and she said to me, "Thanks for helping"

One of the cutest things she's done and a huge step for her was showing a huge amount of empathy. Her big sister was very upset due to frustration and she was crying. S went up to her and said, "Why are you crying?" Then she ran to the bathroom and got her a tissue and put it up to her nose and said, "Blow". Then she said, "Throw in the garbage" and ran to throw it away. She came back and said, "It's okay, lets go play (something, I forgot what)" "Come on" as she grabbed her hand and led her upstairs. I've seen her play with her dolls that way too, it's so wonderful to see that.

She is really doing great with gymnastics. She will try almost everything now. Yesterday, she crawled through a tunnel, something she would have never done several months ago. She's getting so much better at following directions. She needs to be potty trained for the older class, so I guess I need to work on potty training for several reasons. I understand the need for some activities to have potty trained children, but this excludes some children who have no other restrictions. Where do the children get to go who have incontinence due to spinal problems? I know there are children who have spina bifida or repaired spinal problems whose only side effect is incontinence. Are exceptions made for these children? I have found that there are really no options for a child who has different needs. Even in the school system, they accomodate because they are required to, but the needs of the child aren't really met. I know there are lots of parents out there who have this issue, I wish we could have a local network. Most people just end up homeschooling. There's nothing wrong with that, but there needs to be other options also.

I forgot to say, S's eye tracking showed an improvement, yay! One more thing I forgot. Yesterday S was playing with her Leappad ABC book. It asked her to touch all of the words beginning with a certain letter. Much to my surprise, she went from word to word, doing exactly what they asked! We have done very little letter recognition work, it's amazing what she knows on her own. My other kids could all read before they went to kindergarten, so I haven't pushed this so she isn't bored learning letters when she gets to school. I tried this same approach with my now 12 year old and she was the earliest reader yet! She read to her pre-school class, much to the surprise of her teacher. It's not that I don't teach S or expose her to everything, I just do it in a fun way instead of drilling her and formally 'teaching' her. We've had so much more to work on that was so much more pressing, that learning letters was last on the list. She is only 3, so it's not like she should have this all down anyway. I'm excited to know she is picking up on everything, she's just not letting on all that she knows. I have said this from the beginning, and still believe it, she is keeping a lot inside and just giving us a glimpse of what she knows. Maybe it all has to do with attachment, if she doesn't let on what she knows, she maintains some control. She doesn't exhibit a huge need for control, she just is fearful of new things. After attending Denise Best's semminar, I was happy to learn that our attachment is much better than I thought. I was expecting the info to be a 'light bulb' moment for me and have all of the answers spelled out for me and that was not the case. Good that we are better off than I though, but bad that I don't have all of the answers.

Lastly, please leave a comment if you follow this blog. My goal is to document our progress and be encouraging to others. If you would like to see other things discussed, please let me know what would be helpful. Every child is different, but NR is like a diet, it works if you stick with it. I am a true believer in this method, and my daughter is the proof that it works, even when I was a sceptic along the way.

Progress to Report

I just realized the other day that we have made some immense progress in sensory integration. Just 6 months ago, S would NOT wear a jacket and certain textures of clothing. She wears a jacket without protest now, it used to be screaming and ripping it off. She will wear different textures that she wouldn't tolerate before. She actually touches and play with play doh now, she used to pull her hand away from it like it was something foul. She plays with moon sand, another texture she hated. We can brush ALL of her teeth for almost as long as we want to. She is eating some real food these days, not a lot, but way more than 6 months ago. The best part of this is that she has not had any other intervention but NR. The biggest progress I noticed was just last week. I was at the hair salon and she was on the floor playing with some toys. Someone turned on a blow dryer, which normally would have sent her into a panic and leaping into my arms. I was braced for her, when I observed her casually look in the direction of the sound and then go back to playing. This was nothing short of a miracle. She is also making progress in attachment. She plays the little mommy, slinging a bag over her shoulder and saying, "Bye, see you later." "I'll be back soon." I'm going to the grocery store." I remember getting advice to let her watch me brush my teeth to make her want to do it too. This was way back when she couldn't care less what I was doing. She plays with her doll like a little mother, which makes me happy when I see how she pretents to care for her. She does lift the doll out of the high chair by her hair, something I can assure you she has NEVER observed by me or anyone else. I tell her she is hurting her baby and she just laughs at my reaction. Okay, so we're not there yet, but progress is progress. She immediately says, "I'm sorry mommy" when she's done something I don't like. How I wish I had a crystal ball, or maybe not..

Wow!

I have some great news to report! Today was gymnastics class, last week daddy took her. He told me how she took turns on the trampoline and sat down and waited the minute she was told to give someone else a turn. I thought that was great, but didn't think too much about it. Today I got to see this miraculous event for myself. When another child came up to the trampoline and I told her she needed to give him a turn, she immediately ran to the side and sat down, waiting patiently for her turn. She did this time and time again, much to my amazement. I have never seen her this self regulated in my life. It could be because of the vestibular and sensory stimulation allowed her to stay calm, I just don't know. She can be doing all kinds of activity like that at the park without the same results. Maybe it's the bouncing of the trampoline that she needs. If that works, you'll soon be seeing a trampoline in our back yard. This is the glimmer of hope I needed. Isn't it weird that if you could see into the future and know everything will be okay, that none of this would worry you? On another good not, S allowed me to position her for the tonic neck reflex. She has been uncooperative thus far. It's not one that you can make them do it they don't cooperate. That's all for now.

Advice

Okay, I've talked to Bette about our issues. It all becomes much clearer when you can talk it out with someone who has insight as to what might be going on. She thinks these new behaviors are being caused by anxiety. I agree that is what it looks like. We can do compressions and body holding to help her get de-stressed and re-regulated. Remaining calm will be the hardest part, I tend to act a milli-second before thinking. Big character flaw, but I constantly work on it. I admit I started out calm, but when nothing worked, I resorted to yelling her name loudly hoping it would startle her into action. No such luck with a traumatized child who has tuned out all she cares to avoid. It's hard to speak softly when she has ripped the glasses off of someone's face and threw them. Bette also suggested theanine, which I will take myself to lower cortisol levels. I have many other life factors which are contributing to this situation, blah.....

So I'm going forth with renewed optimism again. If I can continually view her issues as being scared and stressed, it will be easy to treat her with the softness and compassion she deserves to get through it. I look at it like my phobia, there isn't anyone who can talk sense into me that the stupid little insect cannot hurt me. I'm afraid of it even when it's dead. I don't need someone to tell me not to be afraid, it just doesn't work. I need someone to tell me they understand and get me as far away as they possibly can before the ugly thing springs back to life! How horrible to think she might be having fears like that. I guess that's why she's my kid. I can hug her and carry her away to another couch when she's " 'fraid couch" even though the couch can't hurt her. She refers to herself in the 3rd person when she says she's afraid. Bette said that the 2 sides of the brain aren't communicating, and we need to plug on with the tonic neck pattern. I think that that is what stirred this up to begin with. This is going to be harder than I thought. We'll get through it one way or another.

January 2010 misc. observations

It never ceases to amaze me how powerful simple crawling can be. I guess my irregular schedule of exercises has proven to be somewhat of a good thing. Since the only therapy we are doing is NR at this point, I can easily identify behaviors and changes due to following the program. I am so confused and frustrated at this point, something that is hard to admit. While my life is filled with things to worry about, if I compare myself to the average person, I am quite fortunate. I live each day as if it were my last, and I am grateful for every moment I'm given. I wish I had some clear cut answers when it comes to solving my daughter's issues. What is the cause of her problems, sensory processing disorder, RAD, prematurity, or a non fully integrated neurological system? Do I treat all at the same time? Do I experiment with different therapies until I find something that works? I know most people who do NR do several therapies at once and the practitioners encourage that. I will use more than one if I need to, but for now I'd like to do one at a time. We are going to explore attachment therapy, I think that is crucial at this point. I guess I keep hoping for a magic solution or the light bulb moment when something specific is pinpointed and a magic solution revealed.

I had one of those knock the wind out of your sails moment yesterday when I heard a 9 year old girl describe S as 'very energetic' and a few other descriptive words that stabbed me right in the heart. S can have very calm moments, but they aren't frequent. She can play with something she likes for very long periods of time, but other times she buzzing around the room. Her little stages she goes through are relatively short lived. Just when I start getting worried about them, they disappear. The latest is a little throat clearing sound. I remember reading something about it on the Neuro group, but I doubt I'll get time to go back and investigate it. Time seems to be the biggest issue. If only I had time to do it all, I'm sure everyone feels this way. I hate the time it takes to type all of this out, but it is actually theraputic for me to get it out. I don't want to forget where we've come from in this journey and how far we've made it. My intention is for this to help others through it all. I plan to be able to post when we've graduated, I hope that's not too far away. It will probably be another year, especially at my pace. I'd like to think that more people are like me and aren't perfect in getting 100% in every day. This way they can be encouraged that they can still get to the end by going a little slower, and won't give up because they've had to take a break. I think the program is bringing up things that S can't verbalize, and it's causing the things we are seeing now. She is very scared of a lot of things. We carry her a lot, which I don't mind because it's great for attachment. The newest thing that has come up is that she lets out this little utterance of panic, like she just saw somthing that startled her. It seems to be connected to the throat clearing thing. It almost sounds like the grumting sort of sounds that autistic kids sometimes make. Yes, this scares the heck out of me. Are we dealing with autism? I don't think so, I highly doubt it would just show up now. I've thought back to anything that might have changes in our lives and I thought of something very disturbing. She's had some pretty big bumps on her forehead from bumping her head. She didn't have any significant falls, but she's still had a couple of sizable lumps on her head in the past month. I think if she had some type of damage that we would see it in other areas. The poor thing seems to be prone to injury on her head. It doesn't help that she head bangs when she is frustrated.

I guess the last thing is that there is no one person who is going through the same exact thing. It doesn't mean that no one can help, but I still feel alone. I have a couple of good friends who are good listeners, and that is priceless. Friends come and go, but all you need is one or two who you can be there for and they do the same for you. I've had other friends who are adoptive parents also, but just like any other situation, if your child is making more progress than theirs, they tend to dump you. Same thing happens if they get beyond the bad stuff before you do, they don't want to be in that category anymore, so you get dumped again. Such is life.

A Minor Detail-or maybe not so minor

So tonight I was putting S to bed and I forgot I needed to change her sheets. I changed the sheets but not the pillowcase, because I had just changed it a couple of days ago. Her diaper leaked through, so that's why her sheets needed to be changed after only a day or 2. Normally, her pillow just gets tossed out of the bed, mainly for entertainment, so who thought it matteered anyway? The past couple of weeks, I noticed she neatly arranges her pillow on the bed. I thought this was a little strange, but she changes her routines all of the time. Back to tonight-I have only 2 different pillowcases that I use for her bed, one is solid pink(the one that was on the pillow), the other has a dog pattern on it. After I put her in bed, she was asking for the doggie pillow. I wouldn't have thought in a million years that she noticed the pillowcase. For the last year, she hasn't even used a pillow. This brings something horrible to mind. I had read a story long ago about a girl who had attachment problems. She was older, and one day she burst into tears and told her mother that she was sad that she gave away her baby bouncer. I am a saver of all kinds of things, particularly sentimental things. I have gotten S so many toys, most of them thrift store finds. As I did with my other kids, I always took cues from them about their abilities and interests, and got them appropriate toys, games, etc. So with S at such a disadvantage, I have gotten her more than most kids to help her catch up and develop. This leads me to the dilemma, what to get rid of? If she noticed the pillowcase, is she wondering where some of her old toys have gone? With a child who has had their life disrupted as she has, does she worry about what will stay and what will go? I'm talking about toys, people, her house? I just don't know the answer to that. I try to keep a toy that I'm going to get rid of out of sight for a while. That way if she should ask for it, I have hung onto it. How long before it's safe to get rid of? I wish I knew. Tonight I've discovered that she notices things I don't realize, so I need to re-think our daily life.

It's New Year's Eve!

Wow, what a year it's been. We have seen amazing progress, and that's something to celebrate! I just sat down for dinner with my little darling. Not very eventful for most people, but for us, it's an amazing accomplishment. First of all, S is sitting in her booster chair instead of my lap. Two days ago, she asked me to identify a slab of play jelly and a slice of bread. After I told her, I asked her if she wanted to try a peanut butter and jelly sandwich. She said yes, so I excitedly went and made her a half of a sandwich. Much to my surprise, she ate it and loved it! So tonight, she sat next to me and proceeded to eat 3/4 of a pb&j sandwich, along with several animal crackers. She even pretended to drink out of her sippy cup. I actually think she got a drop or 2 into her mouth and she didn't panic. Her speech is amazing and her vocabulary is remarkable. She pretended to 'read' a book and kept using the word 'corporation'. It was hilarious. We think she must have gotten that from watching PBS. She really picks up on everything, so I just use an adult vocabulary around her now. She still isn't able to communicate with us like we would like, but I'm not so sure it's because of her inability to do so. I decided it was safe to assume she knows and understands much more than she lets on. I didn't want to limit her capacity by questioning her ability. So far, it hasn't backfired on me. Even her eyes seem to work a little bit more together than they used to. Her left eye used to look in a different direction and her 2 eyes didn't align. I have been feeding her in the cradle position for about 5 months now, and it has had measurable results. We plan to attend a conference given by Denise Best in February. I also plan to consult with her for an assessment. We need more fine tuning these days than a major overhaul but it seems each day we have something new to work on. S has developed a habit of throwing things and occasionally hitting. I hold her hands next to her and tell her no hitting. Sometimes this leads to her using her feet then her head. This progresses to a full body restrain, which is very effective. I tell her what she's done wrong then after 30 seconds or less of protest, I ask if she's ready to be good and not do 'whatever' anymore. Now, after a week or 2 of that, she almost immediately starts repeating over and over, "Be good, be good", and then I let her go. If she hurts someone, I'll make her say she's sorry. This method is working very well, although I know impulse control is very difficult for her. I've read so much about kids showing a violent side, it's going to be really hard for me to handle that if S exhibits that side for a long time. The hardest part will be for me to know she has those feeling inside of her, she has always been such a sweet child. She is always so happy too, despite her inability to do so many things that other kids her age do. I would rather have her stay happy than to trade that for being developmentally on target. You just can't beat happy. Her joy spreads to me and her whole family, and we love that part of her. She can't help put a smile on your face. Speaking of smiling, I got the best present just a few days before Christmas. I was talking on the phone, and she was cruising around the kitchen in her little cozy coupe car. Out of the blue, she asked me for a hug. I leaned down through the bars of the car to get to her and she gave me a hug. Then the best surprise of all, she said, "I love you!" That's the first time she's ever said that. You know, it was worth waiting over 2 years to hear that, because I know she did it unprompted. I know so many kids who are little robots and can regurgitate everything they are taught, but what do they know on their own? Especially with adopted kids that may have attachment problems, how do you know they are feeling it or just saying it? I know S is very repetitive, and the things she says on her own I know are real for this very reason. It was such a special gift to me, just like my first real kiss! Another accomplishment that was noteworthy was that she actually responded to someone she didn't know. All of the time, she ignores all people, and will not even respond yes or no. We can barely get responses from her. She loves to talk, but not to respond to us or anyone else. She was at the dentist with her sister and I, a place she's not comfortable with. She sat in the hygenists chair with her sister, which really surprised me. Then, at the end, she actually opened her mouth so the hygenist could see her teeth. She didn't let her anywhere near her, but opening her mouth was huge!!!! Then, she actually answered a couple of questions. I can't believe she is 3 and a half already, she has grown so much. In a little over 2 years, she has grown more than 8 inches and gained 12 pounds. She has overcome some fears and developed at least as many if not more than she had. She is pretty much over her repetitive stage, and she sings all of the time. Unfortunately, she's knows the theme songs to some shows that her big sister watches. Good that she knows the songs, but bad that they are the I Carly theme song and stupid shows like that. She immediately bounces into action when she hears Beyonce's All the Single Ladies. She also knows the new line dance song by Hannah Montana. Such is the life of a 3 year old with 3 big sisters. It could be worse. She's a girl who likes Disney Princesses as much as her Hot Wheels cars. She loves books, and is learing a little bit of Chinese. Some days are full of promise, others full of despair. I know I'm looking forward to 2010, and hope to be through with all of our therapies and onto enjoying all that life has to offer. My little girl has come so far, and has a long way yet to travel. We get through it, one day at a time, and we'll try to enjoy the hard parts as much as the easy ones. I'm grateful for learning about NR and not settling for the limitations of therapies available in my area. I'm looking forward to a year full of accomplishments.

November 23, 2009

At our last evaluation, we were given a set of movements to get rid of a primitive reflex. The good news is that they are brief and that S loves them. We are at such an amazing place developmentally, I am feeling really omtimistic that we will close the gap sooner than later. We are having more success eating, a little more variety, quite a bit more quantity. Behavior is improving, although we are going through a stage of throwing. She is still having a problem with sound, it seems to be magnified. She can hear a train whistle from miles away and is scared. She spends a good amount of time being randomly scared. Actually, it's a tiny portion of her day, but somedays, it feels like it's a good part of her day. I hope this passes with time and therapy. S is obsessed with having a certain door shut in the house. She goes from one obsession to another, but I don't think it's really a problem. The good thing is that every time we take her away from our house for a couple of days, she always makes great strides from being stretched beyond her comfort zone. This is where there is a parenting problem. As her mother, I feel it's my job to protect her from the world. It is extremely difficult for me to purposely take her out of her comfort zone just to face her fears. This is why I liked going to OT. I was there to protect her, and the OT was the bad guy who scared her with new things. How does an adoptive parent who is constantly building trust accomplish this? You don't have to be an adoptive parent to worry about this, but it is much harder for an adoptive parent. With your children born to you, they pretty much trust you from day one, you don't have to constantly reinforce it. I have worked so hard on trust, and after 2 years, she still doesn't trust me completely. She does run to me for comfort, it took nearly a year and a half to get there. Although I believe my child is the most joyful child I've ever encountered, I wonder how much more she could enjoy life without her obstacles to overcome. We are bonding stronger than most I feel, because conquering your fears together is almost like being in a war zone together. I love our life together, with all the good and the bad.

NR re-evaluation

We had our NR re-evaluation on Saturday. I was very pleased with the results. We have a new set of things to do, along with some old. I honestly can't wait to get rid of the ugly crawling mat that has been a part of our lives and floors since February of this year. We have come so far since February, even with some breaks along the way. We are in this until the end, whenever that might be. As we progress, new things seems to take over with their level of importance. This therapy is definitely not for people who can't go with the flow. Although it's good to be rigid with a schedule to get things done, you have to be so in tune to what may surface as the therapy goes on. We had some big emotional changes with some of the movements, so now we have to deal with that. It's actually a good thing, but a change from what we had. So here we are, armed with a new protocol and new hope for positive changes.