I have her back!

I have my darling, pleasant daughter back! Tonight we did our exercises late, it could have been a disaster, but it was a breeze. We didn't do as much belly crawling as usual, but that was because she doing such an amazing job of doing it so well. She again asked if we were going to do the fetals, so I laid her ontop of me and we did ONE together. She was willing to do more but I knew better than to try that. I took a big risk adding it in, but since she was expecting it, or rather probably making sure we weren't going to do it, I thought I would try one. We finished and I asked her for a big hug. She willingly gave me one, and I kept her there for as long as I could. We hugged tightly again, and we shared kisses. I told her I loved her and she said she loved me too. It was a huge success today. She has been in an extra good mood since finishing. I spoke with Bette today and I feel so much better. On the other hand, I have some horrible news about something that happened at school. The OT and teacher spoke and it seems that they have forgotten all I told them in the beginning about sensory integration disorder. They have been treating her just like any kid and that her behavior is all under her control. Hopefully too much damage hasn't been done and we can end the year on a good note. It's always such a risk to allow others to be with your child. My older 3 children were pretty shy, and I felt it was a risk with them. One of my kid's 3rd grade teachers was mentally abusive to my poor little girl. They were vulnerable, but my littlest is the most vulnerable. If I have time and don't ruin my keyboard with my tears while trying to write about it, I will attempt to tell the story. Right now, the school system is trying to coerce me to start S in kindergarten in the fall. Let's see, a child who isn't completely potty trained and doensn't eat in school all day by herself? Even after knowing that, they still suggested it as a good idea. Are they insane? I mean, really?!?!?

A Better Day

Yesterday we didn't do any of our program until right before bed. We never do this because she is too tired and crawling used to get her wired and not ready for bed. When we finished everything, she asked if we were going to do the fetals(she described them by motion). I said no, and she popped up and went downstairs. Overall, it was a good day, she was almost back to normal. We will wait to hear from Bette. For now, fetals are out until further notice. We go to OT this morning and hopefully start the listening program.

Help!

Hi Bette,.

I really need your help. Today was the worst day we've had since coming home. S never throws tantrums, rarely cries, and is a happy child. Her frustration and behavior have been escalating, and today it all let loose. She is like someone who is trying to get out of her body. She tells me she is frustrated. She hit herself in the head, pulled out her hair bow and hair tie, pulled her hair, and cried and screamed. She wouldn't listen for anything all day. I tried every tactic I know and nothing worked. I let her scream and cry to help release her frustration. Since I found a way to do the fetals, we did a few yesterday, but only a few since you said we should probably not do them if she resists. When she was at her worst today, I had flashbacks and realized this happened before. As I remember, it was in response to fetals. So I will stop until I hear from you. There have been some significant notations the past couple of days, and I sent you a couple of emails regarding this a day or two ago. They will give you the whole picture. We can't go on this way, I can't see her this troubled. If she has to go through this at some point, then she will have to do it at a slower pace because it is destroying both of us. I am as frustrated as her.


I will add some thoughts to this. What a horrible few days it's been. Today I vaguely recalled this happening before when we did fetals. It was so long ago, and as always, I am quick to forget things once we've gotten past them. Since these behaviors were so short lived, I wanted to forget them as soon as possible. Today at Chinese class, we were combined with S and her sisters class. There were parents there who had an adopted daughter. They couldn't help but stare in disbelief at her behavior. Screaming, throwing, not cooperating, a real nightmare. They weren't giving me any horrible looks, but it was hard to see her stared at like that. Today at church, the quiet room was crowded. There is a boy who has what I think is autism. He doesn't speak, and his behavior is not the best. His mother is a saint, she is the kind of mother I wish I were. She is so good with him, so patient and loving. It takes a lot of guts to brave the ignorant people who stare and don't understand. the problem is that S appears to be quite average by most accounts, so when her behavior declines, it looks like she is a brat and I'm just a bad mother. It's so unfair to her to be judged like that. No, I don't like it either, but I'm the adult, I'm suppoesed to be able to handle it. I guess I have failed on that one.

Something New

S devised a new way to do a difficult pattern. How smart of her to think of the perfect solution to a big problem. She has been reluctant to do the homologous stretch, it's one of the fetal patterns. So as I was showing her sister what to do with S's legs, she climbed up ontop of me. I realized that if I move her arms and move my own legs, that her legs will do what they are supposed to. After the demonstration, she spontaneously said, "Love mommy and daddy." I proceeded to do them with her ontop of me. After we were finished, I turned her over so we could snuggle. She is normally pretty resistant to that, but today she was much more cooperative. Today was a pretty easy day as far as getting the work done. she hated the homolaterals. I absolutely can't stand forcing her through these. It just doesn't feel right to have negativity surrounding this.

Some Videos

I took some videos to show our level of frustration. For those of you stuggling with cooperation, this will make you laugh. Someday, I'll be able to look back and laugh too. In case you can't understand what she said in the bottom video, she says, "Mom, I'm not going to do this!" The first video shows her flying through the homolateral pattern which is the wrong way to do it. I would love her to blow through them at that pace, all by herself, but it wouldn't be worth much. I have to manually start her head turn and make sure she brushes her hand against the floor on the way down.

FRUSTRATED

I probably should wait to calm down before writing but it has been a stressful week. We are having quite a bit of resistance to the program and I have had enough pleading, coercing, punishing and whatever else to get things done. Yesterday my older daughter helped and it was a breeze. Mom just can't get exciting enough to make it fun. S has been using the excuse she is scared to do her 'exercises.' One day, while we were doing the patterns that were assigned pre-reeval, we clapped at the end when she finished because she was so cooperative. Clapping has just recently started bothering her again. We kept promising her we wouldn't clap at the end and could finally convince her to do them. So I have been thinking the scared response is a delay tactic. She has started using, "I'm hungry", and several others. I tell her she needs to get her work done and then I will give her what she wants. So today I was doing the fetals, which she is very resisitant to, and she stopped after several and said she didn't want to do them. I asked why and she said she was scared. I asked why she was scared and said she didn't want to do them. I asked her why she didn't want to do them and she said they made her sad. That was a first! She rarely talks about any emotion, so I was really surprised to hear her say sad. Then she said she was sad because she couldn't do them. When we were doing these, I was moving her arms and she did her legs. When I put her hands near her ears, she pushed my hands tightly against her head and wanted me to squeeze her head. She used to want me to squeeze her head a long time ago because she needed the sensory input. Then I got to thinking that these were fetals. I don't know where they come in the order of pre-birthing, but it made me wonder if they happen right before birth and her wanted me to squeeze was what she felt during childbirth. This might be a stretch, but it is quite the coincidence. Since she was probably a preemie, maybe these patterns happened right before she was born. I'm going to ask when these actually occur in-utero. Still, an interesting observation. We were told we could back off of these or discontinue, but I give them a try each day to see how many I can get in. Since it's all becoming a struggle anyway, might as well do as much as we can.

Our OT is going to try the theraputic listening program with S. I can't wait to start as I think it is the missing piece of the puzzle. We just got some terrible news about the VPK program. They are saying S is ineligible because she will be too old. I thought schools wanted kids to start later now? Everyone, I mean everyone, is questioning why I want to start her late. I am stressed at the fighting I need to do. Now I need to deal with more people who just don't get it and want to blame everything on me. I'm so worn out.

Notes

Yesterday, we had to go out of town for a wedding, so no NR. This morning, S asked, "Are we going to do exercises?" For someone who protests all the way through, why does she ask? I have always said her body knows she needs it. Her tummy crawl is progressing, but she just can't seem to get her left leg to do the work. She protests about the fetals, which are the easiest. How are we supposed to make it a pleasant experience when we have to force her through them? I make her snuggle when she's finished and she doesn't like it. It reminds me we aren't as far as we need to be for attachment. We have come so far though, we'll get to where we need to be.

I found out the listening program that Bette thought we could use cannot be used at this time. I'm going to try to convince the OT to do a listening program for sensory. The OT acts like she has some knowledge of attachment, but when mentioning the listening program, she spoke of going back to early times. Then she said something like, "Oh never mind, she was an orphan." Gosh, why aren't there people who get it? Why should I have to travel all over the country to get my child help? It looks like I need to do that. People act like they know, but they only want to understand as much as they already know, they aren't open to learning more. I don't know if this is the case with our new OT or not, but that comment really made me nervous. I will talk to her and see what she means. We were discussing something else at the time, so I didn't get into it.

OT Report

I'm just going to copy what I wrote to Bette on this one....

I just spoke with Sophia's OT about her findings. They are very disturbing to me, specifically the severity of issues found.

This is what she said: S has severe motor planning issues. Her visual tracking is off. She doesn't attend to the task visually long enough. She is easily distracted both visually and auditorily.

She is both tactily and auditorily defensive. She has a hard time transitioning from a preferred task to a challenging task.

Her systems are not integrated, she is uncomfortable in her own body.

She doesn't bring hands together at midline, doesn't reach behind her back, and needs to turn her whole body to reach for an object or complete a task.

She is orally defensive and can't get her mouth, tongue or lips to do what she wants them to do.

Of course some of this we knew, but the extent of it is quite overwhelming. I am feeling terrible that she hasn't been in OT these past 2 years. The person we had wasn't any good and I just found this new person. She is far away and it is expensive, but we need something. Today she fed her a snack for 30 minutes. Although she got information from watching her, it is extremely frustrating that I drive 40 minutes and pay who knows how much for her to watch her eat for 30 minutes. At this rate, she will be in OT for years and never be ready for school. Sorry to project my frustration, but I wanted to give you this information to see if there is anything you might want to add to S's program. Today, I had to physically move her through the homolaterals. She is doing the tummy crawling for now, but complains that it hurts her knees and elbows. Please give me your thoughts on this and my other questions when you get back.

Now, more of my thoughts...I need someone to help me do the fetal patterns.
The one we are doing is a 2 step pattern, which takes some practice to get right. I'm pretty sure all of the direction, correction, and arguing and NOT how they are meant to be done. Today is a frustrating day to say the least. The OT report is so upsetting. If I had competent people around me, couldn't we have been working on this? The school didn't think we even needed OT, that's why I told them they could keep their help. I called the ped's office yesterday to get a referral for an audiogram for the listening program I am getting involved in. They asked if I thought she had a hearing problem. I explained that her hearing it too acute, that's why she needs this program. She seemed to get it and said she would tell the doctor. She called back today and said they could give her a hearing test. Hello? Do they need an intelligence test? I told them again what I needed and confirmed they couldn't supply it, so I wait another day or more. The place that is doing the program isn't the most cooperative. They act like I'm bothering them with my questions. They are willing to do the program without even talking to me to see if it's right for us. What????? So now I wait until Thursday and see if she can talk to me in a few hour window for which she cannot set up a time. Now I need to see if the school will consult with the OT. I hope tomorrow doesn't lead to more frustration or I'll need a straightjacket. I am grateful that the school wants S to be like the other kids, I do too, but she needs to be handled differently. She can only be helped if you accept her for who she is. Isn't that supposed to be the hardest for the parent and not others?

A Heartbreaking Discovery

Okay, I'm wondering if I should be taking the time out to write this, but I want to be able to remember how this important day. It has been a particularly frustrating day for both of us. Her teacher said it was an okay day. S told me that a teacher pushed her into the time out chair. This was her version, and I think the teacher probably had to physically re-direct her to the chair. She told me she spilled water, which seems to happen often. Whenever she does something like that, she is frustrated. You would think they could recognize that and see it coming since it doesn't seem to be the rare event. Of course I never hear it from the teacher, she says everything is great. I don't know if she thinks she can handle it or maybe she doesn't know what to do about it. I don't know if I should leave her there or not. If I take her out, I think that will leave her feeling like it is all her fault. If I leave her in, she could have even more difficulties because they keep thinking this behavior is all under her control.

So we were doing our crawling, which she hates and has been putting up a fuss over. We moved to a different location and she started ripping the crawling mat where there was already a rip started. She said she was frustrated. She asked me to spank her. I told her that I don't spank her. I asked her if she wanted to be spanked and she said no. Did she feel like she deserved it? We finished up after a few more laps. While I was feeding her chicolate pudding reward, I asked her a question. I said, Does mommy love you when you are frustrated? She shook her head no. I was shocked! I proceeded to tell her that I loved her when she was happy, sad, mad, frustrated, and I would love her forever no matter what. I was devastated and know we need to talk even more. Crawling is bringing up emotions, no wonder she doesn't want to do it. Why can't I just take all of her pain and spare her the hurt?

Re-eval

I've been wanting to post this for a few days now, we've had our re-eval. Overall, it went well, and we've got a very manageable program. We are very obviously not finished, but the good news is that Bette said we could be close! I so wanted to hear that, but was afraid it would be much longer before I heard anything like that. She said we 'could' be close to finished, so that has a lot of gray area. One can never predict how long something will actually take to heal completely. We got back to tummy crawling and you can really see that there is a lot of healing that needs to take place. Everytime we stop the tummy crawling, there is clear regression. This is the area of most resistance, so we are going the slowest. I will rejoice the day we no longer have to tummy crawl. We started homolaterals, which I thought would be a battle like tonic neck patterns. She does them like a pro! I don't even need a helper at this point. I wish I knew if them coming so naturally means that there is less healing to be done in that area?

I have to mention something disturbing. This will be the second time that Bette mentioned that when she first saw S, she was really worried. I'm so happy she didn't convey that to me when she was thinking it. I was already worried, and Bette was the one who finally gave us the hope we were looking for. I'm glad she has the wisdom to know what to say and when to say it. Other people we know felt the same, but only said some thing when they saw how much she has improved. Of course, they don't know what trauma looks like, neither did I. Trauma was an equal size piece of the puzzle. I tend to be optimistic, even though some see me totally different. So if you have been reading this from the beginning, you may be thinking things weren't all that bad. Well, they were. And there are still areas that cause quite a bit of concern. Bette identified a retained reflex this time. I looked it up and this is what it said.
"At about three months of age, an infant will begin to display the Landau's reflex. When she is placed on her stomach face down, she will raise her head and arch her back. This reflex will persist until around the child's first birthday. Absence of this reflex suggests problems in motor development. The pediatrician may investigate further to rule out such problems as cerebral palsy and mental retardation ."

Cerebral palsy and mental retardation? Those words were hard to read. what do both of those words equate to? Brain injury. What does NR address? Brain injury! We are in the right place doing the right thing. Bette also recommended a listening program for S's auditory sensitivity. Hopefully this will decrease her anxiety.

We are going to get the program ASAP. I'll let you know how it goes.