Summer!

Here's a quick recap of 2014 so far. We finished the school year and overall it was a fabulous year. There has been a lot of progress in the social/emotional area. Since school was a safe place, she could let her guard down a little and enjoy. I can see lots of obstacles that are there and will probably continue to be. The attachment yahoo group is really a lifeline for me. Equipping yourself with as much information allows you to identify what your child needs. I am no longer expecting an endpoint to all of this, it just morphs into something else. It's okay though, it isn't any different than any other child. My other children haven't been skating through life without any worries, even though they don't have to deal with any of the issues their sister did. With all of my children, I think the biggest hurdle was dealing with other people. Same with S, things would be wonderful if we lived in our own little bubble. She has been handling loss so much better. It takes a lot to induce a rage. Maybe we are just better at avoiding them, who really knows? Her oldest sister is far away at school and she didn't see very much of her this year. Now she is away again for 6 weeks and although it was hard on S, she did really well. Her other two siblings are away this week also. She said to me at night, my whole family is gone. Even thought she knows they will come back, a part of her believes it will never happen. She just celebrated her 8th birthday! She was filled with anticipation and enjoyed everything. It is so much fun to see her look forward to something like that. It wasn't very long ago that she didn't look forward to anything. The first few years, she didn't even seem to understand the concept of holidays and she was afraid of everything. I think last year was the first time she wasn't afraid of a candle on her cake. This year, she even asked to have the fancy candle that is like fireworks(the Chinese Lotus candle). She had a dentist appointment, her second or third cleaning already. This is gigantic for her! She also had sealants put on her bottom molars. She finally allowed the spit sucker in her mouth. She used to be so scared of that. Now all we need to do is conquer the electric toothbrush. We got a new cat in our house, and she was able to relate to his fear of being in a new home. She said, "He is scared going to a new family like I was with my new family." She is a survivor, and she will use this for good someday. She has already taught us the resilience of a child and we have grown right along with her. You can't ever be too compassionate. Opening your heart hurts like crazy, but expanding your capacity to love is so much more rewarding than the hurt you open yourself up to.

Update

I went back to this blog to look for some links for a friend. I decided that I would post an update since I ended abruptly on the last one. This school year is so different. For the first time, I get to see what happens when the conditions are the way they should be. Last year, it was looking like we were dealing with so much more than just the problems in school. They just saw the reaction of a traumatized child in an inappropriate atmosphere and it looked like my child needed as much intervention as the classroom. I knew differently. Now, with a wonderfully sensitive teacher by her side, my child is doing beautifully. She can finally let her guard down a little so she can learn. I rarely need to ask the teacher do modify anything. And when I do, she responds-immediately. Attachment has come so far, and believe it or not, I think last school year had something to do with that. She learned that I would fight for her and take care of her. She learned that home was a good safe place to be. She is now grounded and has a home where she feels secure and comforted. I can finally feel better about where she is.

Only a few more weeks until Spring Break, then the home stretch. As I go back and forth between the decision to home school or traditional school, I was comforted that S wanted to go back after being sick because she missed her friends. Even though we go through some trials at school, they are things that are building her for her future. She can only learn certain social skills by being social. As I explain to my little perfectionist, you have to make mistakes to learn. I am far too overprotective of her to allow her to learn when she is with me. It is a mother's job to protect her little ones from any harm. I find myself avoiding anything that would upset her. My philosophy has always been this-life is hard enough, I am not going to make it any harder. Life is a never ending journey, so why try to expose them to bad things before their time? Let them enjoy every minute they can, and be there for them when things go wrong. I did that with her older siblings, and none of them are complaining. They have a lifetime to learn the good with the bad. Well, there is some good news as far as school for next year. They have created a multi-age classroom for 1st/K/ It will be a first grade curriculum with a focus on individual learning. It is not a special needs classroom, but more of a specialty classroom. I think this is a perfect fit for us, and in reality, it was added with S in mind. Things seem to be smoothing out lately, but we know there will be lots more to go through, whether it be in school or at home. I told her last night that I'm with her in all this forever, no matter what she goes through. It took her a little pondering to believe it and trust me on in, but she did.

What has been going on?

Well, I thought I would try to play catch up. I really need to chronicle all that happens to give me a good perspective on what actually goes on. For some reason I can't make this blog private. I want a place to write down all of the details, but don't want them public. Maybe I just need to start a different one since this isn't much about NR anymore. I know it has helped some people to read this, we are a really great NR success story. I even heard that our former vision doctor is going to hear Bette speak. I hope one day we can see all of the big egos that work with special children, finally put pride aside and come together to help our kids. A multi discipline approach only works well when one knows what the other is doing. I hope one day that happens and more kids are healed. I can't express the frustration at seeing people I know not even look into different approaches for their kids. School is still a bit of an issue. I'm not really sure what to do at this point. Again, the third year in a row, we are 'getting through' to the end of the year. She will need to be in the world someday, so she does need to slowly learn to deal with what the world has to offer. She starts soccer in a couple of weeks. She really enjoyed it last year. This year will be more serious though, so that could change everything. I'm not sure she is ready to go from playing with her team mates to playing the game. It could work to boost her self esteem or deflate it. We shall see. She is also doing pep squad at school. I am pleased to see how fast she catches on to the cheers. She is the most exuberant girl out there, and by far the cutest! This is a place where her loud voice is welcome. We are doing well at our vision exercises each night. She has been sick this week, so we only got 2 days in. I can't see it ending in June, but maybe there will at least be progress. I can't believe she will be 7 in June, where has the time gone?

Taking Some Time Off

Mental note to self-take care of yourself so you are available to help those who are counting on you. That's only 4 kids and one husband for me. Writing that here somehow enforces the thought and might help me accomplish it. Friday is the last day of school before a glorious 2 week(well deserved, very needed) break. Today S will help me make gingerbread men for her class party on Friday. Christmas music is playing and last minute chores are getting done in preparation for some relaxing family time. The week between Christmas and the New Year will be spent planning how to get our therapy accomplished and FINISHED by the end of the school year. That includes getting my 15 year old to do her vision therapy done too. I could complain, but I have no right. I am happy I still have all 4 of my children alive and well.

More Therapy, When Will It End?

We went back to the speech therapist for help with eating. We will work on improving muscle strength in the jaw and the lips. We are also working on mobility of the tongue. The other day, S was eating chocolate chips(her reward). She put a couple in her mouth while tipping her head back. I noticed something different, worried that she was choking. I asked her if she was okay and she nodded her head yes. I think she even spoke. She reached for a glass of water, and i asked if she was okay again. As she reached for the water, her body sort of quivered, like when you suddenly get a chill. She drank some water and she was fine. I think it went far back in her mouth and she couldn't get it forward with her tongue. After it was over, she admitted that she was choking, or at least on the verge. This has always been my biggest fear. It is more real than ever because I was ready to have my daughter dial 911 for myself the other day. Choking is the scariest thing. So I am glad we are seeking therapy to finally have a chance of her eating more foods. I am really feeling depressed though, because we have this daily therapy, along with our vision therapy which we have NOT started yet(guilt, guilt, guilt) and our NR. I am glad we had this little break, because I needed a time to feel normal. All that has been going on in school has been more than I can handle. This week seems a little better. I have made it a point to let S do whatever she wants when she comes home from school to unwind. Therapy is the last thing we want to have to do after a stressful day at school. Maybe we be done with therapy by the end of THIS school year. I'm tired, I'm stressed, and I want things to improve. Someday...

From Bad to Worse, What's With This?

I had a parent conference for report cards yesterday. That was the good part of it all. We have had horrible problems with bullying, it is constant and daily. One child is the ringleader and the rest afraid to break away. I can't say as I blame them. I have seen this child in action and she isn't even afraid of adults. I realizr she has something big going on, and she has to go to school somewhere, but I have to also protect my child above all. This has so clouded everything else that I have forgotten that we ever had any issues other than this one. I told them that everything else pales in comparison, and that I didn't see anything else worth discussing at that point. I really can't believe this is happening. I don't know how long to let things resolve, I know they are trying different ways of dealing with this problem. I guess I will keep on them and see how it goes.

Remembering.....

I was just reading through an email from a yahoo group I'm on and I was reminded of something. The email was talking about how siblings are affected when you have a child with RAD or some other issue. I remember my kids asking me, "Do you think she'll ever be okay?" I would always answer them, I think so, but there is really no way of knowing. I would follow up with telling them that we are doing everything we can to make sure she gets all the help she needs. It felt like I was being stabbed in the heart everytime anyone mentioned there could be anything wrong. There was a long period of time when I was so worried about the future. I can't tell you how nice it was to be able to tell the pediatrician and Bette that we really had no concerns other than eating. Even that is managable. I still need to micromanage at school, but I am not really what you would call 'worried'. I have a child with incredible self control. Amazing accomplishment-especially since impulse control was at the top of my list for Bette for so long. We have all been through a lot, but we are all better people on the other side.

Re-eval Update

I was ready to call it quits, especially since we haven't done any NR since May. Bette didn't give us the official release, and I accepted it. She gave us some simple exercises that will hopefully accelerate her vision therapy. We agreed to do it along with our vision exercises. I am about to admit something very revealing. I had this realization the other day after my appt with Bette, and what a testimony to NR it is. I have been very compliant with everything we've been prescribed by Bette, EXCEPT- the two things she still identified as deficits. Bette was surprised what we have done didn't correct her eyes. Vestibular exercises are the most important for that. They are also the easiest. Guess who though we could just get by with normal everyday vestibular as being adequate? I never concentrated on them or did them regularly. The other area where we aren't 100% is proprioceptive. S is still a little 'off' with knowing where she was touched when her eyes are closed. Again, the only other area I neglected, thinking everyday contact was enough. I have to fess up to Bette. I feel horrible, I failed again! The good news is that we have done enough work that we could stop if we needed to. Bette is the perfectionist I seldom have the energy for anymore. I used to be one, but my kids successfully remedied that. She knows we can get it perfectly and wants us to persevere. I will do it, I just wish I realized the importance of doing it when I was supposed to. I thought it was 'extra' work that could only make things better. We saw a SLP for feeding and it went really well. S allowed a foreign object far back in her mouth. The SLP actually listened to me and did what I asked of her. She saw the results of trusting me and was encouraged. I don't think she has ever worked with anyone quite like S. No surprise there, no one else has either! She has a plan and it sounds like we can make a lot of progress. I am encouraged and overwhelmed. I have gone to no mail on the NN group, I can't handle the garbage and childishness. I wish someone would just tell the emperor he has no clothes! It's obvious it has nothing to do with the AD policy, why are they perpetuating it? Most of the moms on there are way to smart to believe what they are trying to pass off an an excuse. I have better uses of my time, so I will not be on that group anymore.

It's Working

Our electronics control is working, she is allowed about 10-15 minutes/day and is absolutely fine with it. We had another incident at school, this time it was reported to us by the teacher. They promise they are ontop of things, but that is all they are sharing with me at this point. I want to trust them, but I would also like a detailed explanation of the plan they have in place. Not only does my child need to know she is safe, I need to know she is safe. She is too vulnerable to be put in this position. She cannot be a victim again. School should be a safe place. I can't write anymore right now, I have just convinced myself by putting this in front of my own eyes that I need to email the school. I cannot wait for something else to happen. UPDATE- I emailed and got a response. We should meet next week to discuss a plan. I know they are dealing with much bigger issues with the problem children, but that shouldn't mean that my child should be ignored.