Sick Day

We had a sick day today, 103.5 fever. The good news is that we had a different doctor today and he offered to try to get a little wax out. He was very gentle and he got a little out. He said the rest was a soupy consistency and it needed to be flushed out or suctioned out. If he had the equipment, he could have done it. This is an answer to prayer for sure. We have an appt with someone next Thursday who has the equipment and the patience(at least I've heard that from someone who has taken her daughter there.) I hope this gets it once and for all.

I think the bubbles in her eyes are not a result of fetals. She had mentioned before that she yawned and saw them, but this was during the fetals. Today she said she saw them and it was also when she yawned, but we weren't doing any NR. It's strange no matter what. Maybe she was delirious because her fever was so high.

Banner Day

Wow! There is so much to report today. We are doing the listening program and when she has her headphones with music on, she is not allowed to be in front of a TV, computer or any screen at the same time. Her big sister came home and was doing something on the computer. I didn't set the timer for her music because I put it on right before we got in the car to pick her sister up. I made a phone call and forgot about the music. She was in the same room as her sister and the computer for about 30 minutes. When I discovered she was still listening, I told her she was finished and she said, "Now I can watch M on the computer!" What amazing self control she showed for such a long time. I am so incredibly proud of her, especially because the computer sucks her in.

So I discovered she had a fever today, I have no idea what is going on. She is acting normal and feeling fine. Hopefully it won't last or turn into something more. She happily did her exercises today, even with a long delay between activities. We started the fetals and for the 3rd day, she said, "I see the bubbles!" We high five and hug between exercises, and she said when we were hugging, "The heart shapes are coming out." She has said this before, it's not new, but it's a cute way of describing our love. Then she said we were full of heart shapes and they were knocking at the door. I asked her if she would let my heart shapes in and she said "YES!" I took that to mean she accepts my love, but maybe that's my version of things. I was thrilled to say the least. At the end of our sessions, we have 'tummy time' We lie skin to skin with our tummies touching. Today she asked why we do it. I told her to be close to one another and that we didn't get to do this when she a baby. She then said something random-"I ran around when I was in China" and jumped up and away from me. It was obviously hard for her.

*****tonight, S's sister went upstairs to her because I was cleaning up some dog barf, yuck! She said to her, "Did you know I lived in China for a long time? I lived in (she named the city). Wow, I'd love to know what she is thinking about. I made her a book that explains adoption. She loves for me to read it to her. It is personalized for her and with pictures of her nanny, her and us. This is why she knows the city.

Tuesday

Today was a painful day, but all is well in the end. I waited too long to get started, my fault, but I am human and have other things that need to get done. I was supposed to be at freshman orientation with my 17 year old, but her older sister went instead. I would have to be gone overnight, which could be a problem. I have never bees away from S, and things are going too well to risk it now. My husband is out of town, so that complicated things. I am so grateful that my kids are a bit older and can understand that their sister needs so much of my time. When we were discussing going yesterday, S said, "I don't want to be away from you" This wasn't the first time she has said this, and I am thrilled when she does. So when we were upstairs waiting to do her NR, she chose to do her cross pattern homolaterals first. These are the ones that gave us so much opposition before. She did those happily and quickly. Then she wanted to crawl, and I suggested doing the ATNR. She refused. I made lots of mistakes after this. I held out until she would do it. She did some and then stopped..twice. I called her sister up to help and we kind of forced her through the motions of a few. I realized that we shouldn't be doing it that way and stopped. She was obviously upset. Her sisters left and I just lay on the floor near her. She finally came out with, "I don't need a mommy." I returned with "I still need you" I can't remember now, but I think there were a few more exchanges of words, then she was about to busrt into tears and ran over to me and I held onto her very tightly. I told her I knew how hard it was for her and that I was here to help her through whatever she was feeling. I decided enough was enough and told her we would go downstairs now and not finish. She gets chocolate pudding when she finishes, and she had just been telling me she doesn't want chocolate pudding. She decided it was time to finish and that she did indeed want her chocolate pudding. She happily did the rest of her exercises. Oh happy day.

Monday

We waited to do our NR today and paid the price. Most went well, but we had lots of delays and resistance. A horribly shocking thing happened today. Her sister was in the room to help, but S didn't cooperate. So I was talking to her sister and she was playing with my hand and putting it over her face. Then, the unexpected happened...she took my hand and hit her face with it. Of course I reacted horribly to it, which I shouldn't have done. She then said she wanted me to hit her and I told her again that I don't ever hit her or hurt her. She got over it pretty quickly, but it was upsetting for me. I'm not sure if I mentioned this before but we have a phone consult with an attachment therapist. I'm pretty sure she would say to not react if this happens again, and I'm not sure how long it will take me to do that. I've been on the internet and phone again about our ongoing earwax problem. I made her an appt with another ENT who seems a little more accomodating. It's looking more and more like surgery is inevitable. I don't want to have to do that.

Another Great Day!

Wow! Two days in a row, I can hardly believe it! It took no time at all to get it all done today. I hope it continues. I tested her again to see if she could do something that revealed a retained reflex and she could do it! This means that the reflex is gone! I have been doing a lot of research about retained reflexes and it all points to NR or NR type activities. I wonder how many kids go through their childhood without being diagnosed and suffering as a result? I love my pediatrician, but she has never even recommended a specialist in any area. She never said anything about reflexes, primitive, retained or otherwise. You would think she might suggest a developmental pediatrician. I am so grateful for the internet and my yahoo groups. This has been a rough road with it, I can't imagine life without these connections and information.

Great Day Today

Today we finally had a chance to do our NR earlier in the day, yesterday it didn't happen at all. It went great, no resistance at all!!! She decided to do her cross homolaterals with me doing her legs instead of her head and arms. She also does the ATNR with me at her legs. I'm not sure why she does this, maybe it's less confrontational with me at her legs. Then she said the strangest thing while doing her fetals. She said, "I see bubbles." I asked her where and she answered, "In my eyes." I can't help but wonder if that would be what a developing baby would see in utero. Maybe it's absolutely nothing, but it makes you think. I would have never thought a simple movement could cause any reaction before starting NR, now I know it's much more than a coincidence. I'm still recovering from the developmental optometrist stating S had "so many things going on." That's just really hard to hear. Maybe we have just adapted to her, but I think it's more that her hardest moments are when we are out and she is stressed. I can honestly say that if she never had to fit in with society, we wouldn't have a concern in the world. We are so happy with her at home, she is a happy wonderful person. Luckily the people who know her and see beyond the superficial, love her and think she is Miss Super-personality. She has an incredible sense of humor and is so much fun to be around. You think we are evolving as a society when you look at how many ways we have improved, but it is all a joke when you have a special needs child and see how they are treated. The people who are so narrow minded to not want to learn about new things are the ones who are missing out on children like my daughter and so many others like her. I really can't wait to show everyone what my child accomplishes with her life. There is a lot they can learn from her. She's already accomplished more in her little life than most people will accomplish in a lifetime.

Retained Reflexes

coming soon.....

I found this website and it explains so much. http://www.visiontherapyathome.com/category_s/24.htm

This is copied and pasted from their site-

Symptoms of a Retained Moro Reflex



Exaggerated startle reflex

Dislike of change and/or surprises


Poor learning skills


Lack of creative thinking

Poor eye movement control leading to information processing problems

Poor auditory discrimination, difficulty ignoring background noise

Eye movement and visual perceptual problems

Difficulty ignoring irrelevant visual material

Difficulty with black print on white paper

Tires easily under fluorescent lights

Light sensitivity

Hypersensitivity to auditory and visual stimuli

Inner ear problems including poor balance

Poor coordination, especially when playing ball games

Motion sickness

Physically timidity

Poor stamina

Tense muscle tone

Biochemical and nutritional imbalances

Weakened adrenal glands leading to allergies, frequent infections, & low energy

Adverse reactions to drugs

Hyperactivity

Emotional instability & sensitivity

Mood swings

Heightened state of awareness; always on the edge of “fight or flight”

Anxiety

Excessive withdrawal from others or excessive aggression towards others

Low self esteem

Problems making decisions

Phobias




Symptoms of a Retained Spinal Galant Reflex

Bedwetting


Fidgety and wiggly, especially when seated


Sensory issues (such as with waistbands or tags on clothing, or food texture)


Poor concentration


Poor short-term memory


Hip rotation to one side when walking


Irritable Bowel Syndrome


ADHD characteristics

Symptoms of a Retained Asymmetrical Tonic Neck Reflex (ATNR)








Poor balance when moving the head side to side


Same side movement (homolateral) instead of typical cross-pattern (opposite) movements when walking, marching, skipping, etc


Difficulty crossing the midline of the body (imaginary line dividing the body into a left and right half)


Poor ocular pursuits (smooth eye movements), especially at the midline


Difficulty shifting visual focus from distance to near (such as copying from the board


Difficulty keeping place when copying from the board


Mixed laterality (may use left or right hand interchangeably for the same task)


Poor handwriting


Poor expression of ideas on paper


Difficulty learning to ride a bicycle


ADD and ADHD characteristics


Difficulty throwing and catching a ball


Learning problems including reading, spelling, language math, and handwriting


Difficulty with multitasking such as writing and expressing ideas at the same time


So these are the 3 known retained relexes in my daughter. It pretty much sums up who she is. What is the answer to integrating these relexes? Neurological reorganization! I think we might start vision therapy also. I'll have to ask Bette if she thinks she is ready. I wish there was some magic formula or faster method for all of this. I just want it to work out faster for her so she isn't defined by this. Many people already know her for who she is now. I guess it's harder for an outsider to see the dynamic personality that is there amongst the hyperactivity. It's sad that all of her greatness is overlooked.

Catching up

I have so much to update and so little time, so I will condense it. After our BIT session, we went to Disney World both days. The first day was met with tons of anxiety, so we limited the stressors. She was remembering being stressed the last time we went to Disney, so she was full of anxiety. We went on It's a Small World to get her comfortable, it's her favorite ride. She did great on all of the rides she loved. She wanted to go on the rocket ships, but heard the release of the air from the hydrolics that send the rockets up. She was too scared to go on, so we bailed. She would have loved it had she not heard the noise. She loves to be up high and go in circles. We got a Guest Assistance Card, and that is the greatest thing. She doesn't have to wait in a long line and get all worked up over things. It has allowed her to enjoy her time there. The second day, we only went on a few things because it was so HOT and we were tired. We all wanted to go on the new Star Tours ride, and realized S was tall enough to go on it. I thought she might be able to handle it, but wasn't really sure. I explained it as we were waiting in line and she seemed okay. I didn't know what she would do when buckled in the seat alone. I was thrilled that she did absolutely fine! she wasn't scared and didn't say she didn't want to go on again. This was so huge for her!! We're going to try Splash Mountain next time. We can be closer to her and hug her close. I think she will actually love the drop after the initial shock.

On June 9th, we headed to Denver to see several families that we last saw on our adoption trip. The first day we met with one mom and her daughter. They played together for hours and had so much fun. It was great to see them playing so well together after just meeting eachother. The moms had fun talking and watching their children have fun too! The weather was beautiful which made it just perfect. The next day we got together with 3 other families that had children from the same orphanage as S. It was the first time they had been together in nearly 4 years. S hugged them like long lost friends and they all played like they had always known eachother. It was really nice to get together and see everone after so many years.

Our next adventure was Hawaii. It was paradise, period. We had such a relaxing time, it was a much needed break. We took time off from all of our therapies, we really needed that too (at least I did). We were tested on the way home in a way I never want to be tested again. Since we fly standby, we get the last seats on the airplane and have to board at the end. There weren't enough seats for all 6 of us, so S and I were the only ones to go. (I found out after the fact that 2 of my other children got on). Of course, our seats were NOT together. I have always said that I would get off the plane if we had to be apart. As employee passengers, we are no allowed to ask anyone to move. (If you were ever envious of free or cheap employee travel, this story will have you happily paying $$$$$ for your flight). Our seats were several rows apart, so I went ahead and asked someone in the other seat if he wold be willing to move so we could sit together. It was an aisle seat to boot. He looked at me holding my 4 year old daughter and point blank said, "NO!" The male flight attendant told me to take my seat and he would see what he could do later. I knew later meant AFTER the flight had taken off. I told him that I could not let her sit alone. He said to me in a snarky voice, "Okay, it looks like I'll help you NOW." In the meantime, two people came rushing on, overheard my dilemma, looked at eachother, and said, "Nah". Then the flight attendant asked someone else and they said okay, but that only meant that we would be sitting across the aisle from one another!!!! This was a red eye flight where everyone would be sleeping. So I'm next to this very large man who then asks me if I want to sit next to the window because he had to get up every hour because he was prone to blood clots. Really? Be farther away from my child? To top it off, my daughter was seated next to a little boy who appeared to be profoundly autistic. He was making sounds and hitting himslef in the face with a stuffed animal. Of course S started in with her 100 questions and copying his behavior. I almost cried, I was so helpless. I was so worried about her bothering the poor little boy and him keeping her awake or scared. I was astounded that she did not panic at being so far away from me. I held her hand and stated all of my reassuring answers to her in a loud voice to try to ellicit some comassion from any of the passengers around me. Compassion was not to be found anywhere. I can't even imagine such disregard for a child. She would ask me to turn her light on and I would NEXT to a family member. So it took me several hours to calm down while I watched my sleeping child to make sure she didn't wake up in a panic when she couldn't see me. Of course the stupid drink cart stopped right between us. Then the lady who was in the row with my daughter had a family member who didn't get on the flight. She was consulting the flight attendant about it, so the flight attendant stood right between my child and me, for a long time, several times. She was also leaning into her and I was afraid she would wake her up. Getting back to the employee travel, we are treated like DIRT. The flight crew ignores us and treats us badly. In the past when they served food, we ould be skipped over until everyone was served and then we would get whatever was left over. I didn't mind this, because the regular passengers help my husband keep a job, so they should get first pick. The problem is being treated sub-human by the same employees who travel this was as well!! Anyway, other than moving around and almost kicking the boy next to her, the 5 hour flight went well. She slept the entire way. Then we transfered to another 4 hour cross country flight and the SAME thing happened! We were across the aisle from one another. She did fine and slept again, I was so grateful. I was also still disgusted that people around me knew what was happening and wouldn't do anything. Why couldn't the older couple sit across from one another and let us sit together? I'm still upset about the whole thing and don't want to fly again for a while. Out of all of this emerged a brave little girl. She is just starting to show some anxious attachment, so it couldn't have come at a worse time. On a great note, we slept in the same bed in Hawaii. She hugged me tight one night and told me she loved me and then said, "I do need a mommy!"

We went back to our NR today, I dreaded starting. She did great to start, but then we got the usual resisitance. she was tired, but I had to go out today and couldn't have done it earlier. Tomorrow we will do it early and see how it goes. We had her re-evaluated for vision therapy and we might start that soon. He still needs to do some testing. The good news is that her vision seems okay, not perfect, but good. Interestingly enough, the DR. said his observations were that her emotional component seemed to be her biggest obstacle. On the bad side, he said she has so many things going on, her vision wasn't a big factor, just one of many. He was very frank with his opinion, and said she would not fit into a regular school class. I've been given a lot of reasons to cry lately.

On the ear front, we cancelled the surgery for wax removal. I ran into our old pediatrician and she said there would be no way she would risk anesthesia for wax. I needed to hear that. I trust her opinion over anyone, I really loved her as my kids doctor. It's late, time for bed so I can handle the new barrage tomorrow might bring.

More of the Same

I really need the advice of some attachment people. Do I show her that I am the one controllong the show and force her through her exercises or what? She will eventually do them, but it is horrible getting to that point. She will hit herself in the head or smash her head down on the mat. I can't take the self destructive behavior. Is talking to her and reassuring her going to get her through this? I just don't know what to do. If I am feeling this way watching her, how is she feeling? A little 4 year old can't possibly know what is going on. She said something about having bad feelings. She can't explain what she is feeling. We had our crossinology session a couple of days ago. Maybe it is helping her get it out. It was supposed to help her get past this, maybe it will take time. There has definitely been no improvement in getting her to feel better about doing her NR and being more cooperative. She has this obsession with egg cartons. She has one in my room where we do our exercises and she shredded it in frustration. This was in anticipation of doing her NR, not after we started! We are going on vacation and I don't know what we can keep up with. I'll have to consult with Bette on that. It looks like we are going to need to go through with the anesthesia for her ear wax removal. It is really starting to affect her hearing. She is always saying, "What you said?" I think that expression is adorable, but I do really want her to hear. I reached out for help on this on the NR group, hopefully I'll get some good advice.