Interesting Detail

Yesterday we went to our local library for story time. S has been to this library before, but it's been a long time since we've been there. Now when we got her, she stared up at the lights in the room. We thought she'd never seen overhead lights before, so she was fascinated by them. This wasn't an isolated event, the light staring obsession lasted a long time. The frequency and intensity lessened, but she'll still do it. I began to wonder why a child would be obsessed with lights. Since she has sensory processing problems, I thought it might have been sensory seeking behavior. I got to thinking about it and remembered reading a long time ago about near death experiences. One of the common experiences was seeing a bright light that was very pleasant to look at, even though it was very bright. They were drawn to the light as they were dying. As they were being revived, they felt like they were being pulled away from the light and that they didn't want to, it was such an experience of pure joy and love. It may be a far fetched theory that S may have been through a near death experience, but she was born prematurely. I think this can be established as fact because of her weight at 2 days old. The records say she was 3-4 pounds. Even severely malnourished mothers give birth to near normal weight babies. This weight puts her at least 6-8 weeks premature. If she were born in this country, she would have spent time in a hospital. Her nanny said she was never hospitalized, but there were people who thought she wouldn't survive because of her size. Her neurological profile is in sync with this possibility. Anyway, the reason I mention this is because when we were at the library yesterday, S looked up at the lights and was staring at them and not paying attention to the story. Later, she said she was scared of the lights. I don't know why she is suddenly afraid of lights. The strange thing is that she wants the light on when she goes to sleep. I have to wait to turn it off when she is asleep. Since resuming NR after our summer slack, she hasn't wanted to go in her bed. She used to cry, now only protests a little. She seems fine if I hold her and talk to her for a few minutes, then she willingly goes in her bed. I don't know if NR is stirring up some emotions that she doesn't know how to deal with. She can tell me she's afraid, but I don't know how many more emotions she can put words too. She doesn't mention happy or sad, or any other emotion, pleasant or not. I hope that her lack of ability to express emotions doesn't hurt her. It seems most of the people doing NR are older and can communicate. I'll have to ask Bette this one......She has also told me that she's afraid of a light upstairs. She finally pointed to our smoke detector. None of it makes sense to me, but I'm sure it makes complete sense to her. I wish I could get inside her head to figure her out.

Some Creeping and Crawling Incentives

I'd like to share some things that have worked with us, just in case there are some others who are working with younger children who can't be bribed or are too young to play games. I have a toy that has 2 halves that make a match to make a shape. They are in the shape of an Oreo cookie, and the two halves have the same shape. I slide one across our crawling mat and then she crawls to it and brings it back to me and we open it to see what shape it is. The next thing I've used is The Leap Frog Fridge Phonics game. I slide a letter across the mat and when she brings it back, we put it in the space and push the button to hear what letter it is and it's sound. The same thing could be done with a puzzle, putting in one piece at a time. I just came up with this idea from watching another blog of someone doing NR with their slightly older child. They were playing boggle, and that made me think of the 2 things I've just described. If I come up with anything else, I will write it down, because I know how hard it is to keep a 2 AND 3 year old occupied. We still do it in several sessions because it is hard to do it all at once. I'm encouraged by the success stories posted on neuro-net. We have a long period of time to continue with this, and maybe longer than originally planned because we aren't able to do all of our prescribed activities. We'll keep plugging along, and hopefully I'll be able to continue with new progress reports. There are actually only a few things we want to work on left. We need the self regulation, that's tops on the list, respect of personal space, reduce anxiety, and to become securely attached. We never had the sleep problems or violent tendencies that so many people experience. I think my daughter has only unlocked a small portion of her potential, and I'm excited to see what is to come. I can't emphasize what a happy child she is, and for that I am so grateful. Every day with her is a gift, even if we never get past where we are now.

quick update

I don't have much new news, but wanted to post an update anyway. We've discovered some new motivations for the creeping, so that's going well. Her left leg has finally gotten equal movement in the creeping, so that's good news. She actually colored with her left hand yesterday, that was really exciting. When she came home, she didn't use her left hand at all, it was like her brain didn't know it existed. We've got great communication too, so that's really nice too. The other day, she climbed up on the windowsill from the couch (the couch is against the wall). When I saw her, I yelled to get down and her response was, "Dangerous!" It was another one of those moments when I realize that she has heard every word that has been said to her and comprehended it. My guess is attachment is the reason that she still ignores us sometime. I am demanding that she answers or at least looks at me when I ask a question. Something happened while I was writing this. A few minutes ago, I tripped over her toy and almost fell. She just came back and kissed my toe to make it better. Compassion is still something she is learning. By her coming over a few minutes after it happened, it showed she was thinking about it. She has tried to comfort me when she perceived that I was scared. My little girl has come so far.

August 12, 2009

We're not having anymore problems with sleep. There's some whimpering when bed is mentioned, but no crying. Communication is still accelerating, it's a very exciting time. I think impulse control is what we need the most work on. I know her brain needs to heal and develop to make these gains and the only route to that is NR. I'm being encouraged to send her to the special needs school that the public school system provides, but I just can't send her where they don't understand her. She is only 3 years old and she doesn't need to be anywhere right now. We are having a hard time with cooperation with her NR work, but we do what we can and just space it out throughout the day. I want her to be healed TODAY, but that's just not the way it works. Perseverence is the word of the day.

Great News

We had a nap today with no tears! Hooray!! It was a really long nap, so that means a late night tonight. I think we're going to have to give up naptime because it keeps her up so late. Hopefully we'll have no tears for bedtime tonight.

It's still going on

Well, we're still having the naptime and nightime protests. When we even speak of bed, she starts crying. I'm hoping this is short lived, it's hurts me to see her upset. I know life can't be always happy, but I try to make it that way. I think some of this is separation anxiety. This is a very good thing, because it means attachment. Since returning home, I've noticed a lot more eye contact. I don't leave her often, but when I do, she never protests. Just this past week, I told her I was leaving for a few minutes, but would be back. She said, "Car seat?" I took her along with me because she asked, I was happy she wanted to be with me. The other morning, I left her for an hour with her sister. She asked for me the whole time I was gone. This is a major breakthrough in attachment. The only problem is that she will start preschool in a week. I guess it will be good that she misses me, and she'll only be gone for 2 and a half hours. I guess I'll just see how it goes. I don't know if the timing for all of this is good or bad. She is also communicating better every day. So we'll press on with our NR, and hope this emotional time willl be a time of growth and not take too long.

Strange coincidences

S hadn't taken a nap 4 days in a row. She slept later than usual, so by the time she was at all ready to nap, it was much too late. In the past, if she naps late, she stays up really late. Once thing I noticed when we first started NR, it would energize her. I couldn't do it in the afternoon or she wouldn't want to go to sleep. So on the no nap days, she would cry when I put her in bed at night and act scared to death to be left there. She would stop crying after less than a minute, but it was disturbing just the same. Today, she got up early enough to take a nap. She started hyperventilating at the mention of a nap. I put her in bed and tried to calm her down before I left. She stopped crying right away after I left. Tonight, when I put her in bed, she cried again. I gave her some books and toys and her sister stayed with her until she calmed down. I was really confused about all of this behavior until nap time today. I realized that it is probably a result of starting up our NR again. Last time, she went through some of this when we first started. I'm glad I realized that it wasn't just random that she started this. We've been working on getting her to respond to questions. She is really responding well and talking. The past few mornings, she will just rattle of a bunch of words as if to tell me a story. I don't understand all of the words, so I don't know if she is actually trying to tell me something that she thinks is important. I love that getting back to our program is stirring things up in her, but I don't love that it seems to be stirring up some emotion that she probably doesn't even understand.

July 27, 2009

We have been away for most of the past 8 weeks. Our NR program was tailored to our travel because we knew we were going to be away. Unfortunately, we were unable to do anything because of many factors. Since S is so young, she continues to develop anyway, so she does new things all of the time. We could always make more progress by sticking to our NR, but we all just do what we can. We started back a few days ago, and there's lots to report. S was very willing to get back on her tummy to crawl, I was very excited about that. Her crawl looked like it always did, with maybe a little less leg involvement than before for the first few times. Then something disturbing happened. She stopped using her left leg completely. After a few times, she had the left leg bent at the knee and it was sticking straight up. This was a bigger concern because when she came home, she did not use her left hand or arm to do anything. There was no evidence of injury, so there was no explanation. This issue resolved with effort to get her to use it. So when it re-surfaced after so long, this time with her leg, I called Bette right away, and she reassured me that there was nothing to worry about, that sometimes there's a little backslide and then forward progress. This can happen throughout the program. Yesterday, she used her left leg again, although not the same as her right. We also started fetal patterns. They are very hard to do with alone. We do the best we can. S has problems with mouth sensitivity, so part of our fetal patterns involves touching her hands to her mouth area. When we switched positions and got to the floor, she had her hand covering her mouth. She never touches her mouth, so this was encouraging. The other great thing to report was that after we did some fetal patterns, she wanted to just snuggle chest to chest.

Last year, I discovered that leaving our house and spending the night somewhere else was benificial for S. Taking her out of her comfort zone in a controlled way such as vacations really stretched her and we saw big changes upon our return. She deals with anxiety in new and different situations. When we went away about 9 months ago, she was too scared to go in her port-a-crib. Usually, I'd have to hold her until she went to sleep and then put her in. She never would consider sleeping or even lying in my bed. Well, this time she did. So now that she conquered this some time ago, this last vacation she slept with me the entire time. Since returning home, we have a lot more eye contact. Just the other day, I realized a better way to get her to look at me when I am speaking to her. I used to ask her to look into my eyes. Sometimes, I would have to put my hands over her cheeks and turn her head to face me, then wait until her darting eyes would finally make contact with mine. I don't know what took me so long to discover this, but the other day, I said, "Let me see your eyes." She instantly made eye contact with me. Why didn't I think of this before? She's very willing to show me her big beautiful eyes.

Her speech is really coming along. She still does a lot of repeating what people say to her. Sometimes we need to re-word a question for her to answer. A speech pathologist friend of mine suggested that repeating a question is sometimes done when a child is buying some time to interpret the question and come up with an answer. I looked up repetition on the internet and came up with all kids of scary things. I'm glad I'm keeping this journal, because I can look back and see what she has done. Sometimes when you focus on what they can't do, you forget all they can do. Last night, we had a thunder and lightning storm and I asked her, "Do you like thunder and lightning storms?" She repeated, "Thunder" I said, "Yes, the thunder makes a big sound and the lightning is a big flash of light." Then she said, "Bug". I asked her, "What?" She repeated, "Bug" I asked her to say it a couple more times and repeated back to her, "Bug" to make sure that's what she was trying to say and she said in a frustrated voice back to me, "Lightning bug!" Of course!!!! Her favorite book has a page with a lightning bug! She related the lightning to what she knew, the lightning bug.

This morning, I was doing this little piggy with her. I had forgotten that a long time ago, after I did wee wee wee all the way home, I touched her nose and said, "Boop" Well, she wanted to take a turn with me, so I let her and she did the boop thing with me. I had totally forgotten about it until she did it to me. After about the fourth time, she went to touch my nose and stuck her finger right in my eye. Her nail either poked or scratched my eye and it really hurt. I made a big deal over telling her it hurt so she would know it hurt and hopefully I would get a reaction from her. Seh kept trying to pull my hand off of my eye. It really hurt, I had to keep my eye closed, so I didn't let her do it. I kept waiting for her reation, peeking at her through my hands. She had a look of concern onher face, but that's about it. I told her she hurt me and that I had a boo boo. She spontaneously said, "Sorry" I was shocked! She doesn't usually hurt people, so I've only made her say I'm sorry a few times. I was so happy that she knew the appropriate response and used it. I hugged her and we left it at that.

She's going to try going to pre-school in a couple of weeks, I hope it works out. She plays well with other children, although she likes to hug them and they really don't know what to do when she does it. Am I the only one who thinks it's strange that kids don't hug eachother? I can't remember how huggy my other kids were at the same age, but it doesn't seem like a foreign concept to me.

Overall, our vacation adventures have been a great experience, not only where we went, but S's adaptability to all of the different circumstances. She is a pro frequent flyer now, she loves buckling her own seatbelt. What were the airlines thinking when they put the flight attendant call button on the little controller that is connected to the seat? I'm sure in the dark, many people other than little kids have pushed the wrong button. What kid doesn't love a button that goes "Ding!" when you push it? One time, we were stuck in the two middle seats in a row of 4. Somehow, it seemed like S grew 3 feet bigger and sprouted a few more arms and legs. Of course the people in the adjoining seats tried to sleep the whole time. I can sleep on almost any flight, any time of day, but not for the duration that I saw the people sleep on all of our flights! My goodness, the sleeping pill industry must be booming, I can't imagine being able to sleep so much without them. She was really well behaved on the flights, I was impressed, especially for the amount of time we spent on them. When I asked her if she wanted to go on another airplane ride, the answer was an immediate, "NO!"

That's all for now, I'll try to give more frequent updates now that we are home.

Re-evaluation news

We had our re-evaluation a little over a week ago. I'm happy to report that things went much better then I had imagined. We've made huge neurological progress and we are moving on to the next step. We've been assigned a new set of patterns, and they are very do-able. I must admit, they look a bit strange, but we are going to do them. We know what we have been doing has caused big changes, so we're going to do everything we've been told. I don't know if I've mentioned this, but S's emotional guard is coming down and I can see her falling in love. If I look at her and smile, a change overcomes her entire face and she smiles back at me. She is giving hugs to everyone. I got my first real kiss last week. I ask her for a kiss before she goes to bed and never get one. Sometime she'll press her cheek to mine, and that's good enough for me. I get huge hugs, and I know she is dealing with oral sensitivity, so it's always been okay not to get kisses. It's a different world for her, and I'm happy to be a part of it and understand how she feels without trying to force her into anything. Well, this night was different. She pressed her little lips to my cheek and gave a long kiss. I was totally in shock, not even knowing how to react, and then she moved to the other cheek and did the same thing! I squeezed her and gave her another kiss and put her in bed. She has since given a few more, it has been wonderful. Her baby cousin who is 6 months old was over the other day. She kept walking over to her and touching her on the head. Then she touched her arms, legs, head and was labeling all of her body parts, it was so cute. The baby coughed, and she kept asking her, "Are you okay?" I finally realized that she was expecting the baby to answer, because she kept asking if she was okay. So I answered for her and she stopped. This was the first time she really took an interest in a baby for more than a second. This time last year, I remember being so excited at how far she'd come. I had no idea that she would get to this point one year later. When you have your children by birth, you always marvel over each new thing that they do. With S, each new thing that she does is cause for celebration because we see her unfolding. All of this is in her, she just lets it out very carefully and slowly. We are always in anticipation of what will come next, and it's not always in the order you expect.

We hope to be traveling in the next couple of weeks, so I'll try to keep up as best as I can. We are on an exciting adventure, and I would love to share it so others like us can experience the same joys that we have achieved through NR.

May 14, 2009

I've just got a short update because it's nearing the end of school and things are crazy around here. We have our re-evaluation in 2 days. I'm a little worried because we have lapsed with our program. S doesn't really respond to bribes or incentives, so it's been difficult to get her motivated. The good news is that doors are still being opened and connections are being made. S uses mommy and daddy all of the time now. She also uses the names of her sisters. Yesterday at OT, daddy was holding her while I went to another room. She asked, "Where's mommy?" Today, after her sisters went to school and her daddy went to work, she asked where one of her sisters were by name. I explained that she went to school and then she asked, "Where is everyone?" Her sentence structure is continuing to improve. She pedaled a bicycle last week, which the OT said was a 3 year old skill. She is doing a lot of singing, she doesn't know many of the words, but instantly recognizes the tune. Yesterday, I got some big hugs. On Mother's Day, when I put her to bed, she gave me the equivalent of a kiss. She made the sound out loud, Mwaaaa! That's the sound she says when she blows a kiss. She's letting go a little bit at a time. I'm actually really happy that she is progressing this way, I feel it's genuine and what she is comfortable with. I'd rather it come slowly than for her to go through the motions but feel absolutely nothing. One of the goals we have for her is to feel empathy. She doesn't really realize when she hurts someone and doesn't give much reaction to others being hurt. Today, she was eating Cheerios and I asked her to give me one. She answered no, which was okay, but I wondered why she said no. She usually has no problem sharing, either with me or another child. I asked her again, and she didn't say no, but she didn't give me one either. So I told her I was sad and was going to cry because she wouldn't give me one. She studied my reaction for several seconds and much to my surprise, she ran over and fed me one! After that, she kept feeding me Cheerios.

I honestly don't know what goals to set for her for our re-evaluation. There were so many thing that were completely absent that I wanted to see and she has exceeded all of my goals. We need to expand on the one's we've gained, but I just don't have the same type goals to set. I'll post after our evaluation. I've been told that this blog has been shared with people who are considering NR. I'm so happy you are reading along and I hope this is encouraging to you. I started out a sceptic and turned into a believer. When the opportunity came up to be evaluated, I needed to make a quick decision or lose out. I read as much as I could before we went, but didn't have enough info going into it. That's the main reason I was a sceptic. The remarkable thing I've found is that I can't find anyone who said it didn't work for them. The hardest part is sticking to it and finding new ways to stay motivated. From what I've read on the neuro group, my daughter is one of the youngest doing it, and I think that is the best time to do it. Right now, even with our lapses, she's young enough that this could just be a part of her life. Even if it takes twice the amount of time, it is incorporated into her life so that it will feel very natural and a part of her everyday life. If you are following along, please leave me a comment. You can keep the comments private if you don't want everyone to read it. It always helps to know others are counting on you, it will keep us motivated.