I haven’t posted in a while. I have been writing. I have not been sharing what I write. I have been contemplating why I share my writing here. After taking a break, I have found an answer that I am willing to sit with for now. I write because it helps me clarify my thoughts. I share because I do not want to be alone.
To sponsor something is to support an event, activity, person, or organization financially or through the provision of products or services. My writing is my product . I am supporting my sanity. It sounds overly dramatic. Living in a place/space where the word “normal” has no meaning makes it easy to lose sight of the road you travel on. We are in the middle of change. The girls have each faced their own challenges… challenges made more difficult because change in its self is difficult for them.
GB is in a new class. The old class wasn’t working and was beyond what I could fix. Even though there was only eight students sharing the teacher and the two aides, the teacher was unwilling to have her working at her speed. While I was trying to determine why this class was no longer working for GB, I found out that in the two and a half years GB was there, the end of the year reading scores were not data based. It was the teacher’s best guess. Since GB’s IEP was based on this information, her IEP did not satisfy legal requirements. The school is anxious to meet GB’s needs anyway they can. I have not yet figured out what I want them to do. The class GB is currently in is larger, with thirteen other students. On the plus side, four of the students are girls and GB is developing a nice friendship with one of them. Her anxiety level is subsiding. Most days she is relaxed and happy. The downside of this class is its academic level. None of the students are close to functioning on grade level. Right now, GB needs what this class has to offer socially and emotionally. It is not a long term solution. I plan on leaving her there for the rest of the school year, so I have time to look for something more permanent.
Hope has not had a good month. She has taken the physically aggressive rages into the school. She bit one of the classroom aides. The spike in unacceptable behavior was accompanied by Hope feeling sad for the first time. This is a huge development. Hope has a new therapist. Besides working with Hope, she is helping us develop a treatment plan. She also insisted on us defining where the line was that would put Hope in an RTC. She reasoned that by defining it a head of time we would avoid making a rushed decision in a crisis. Hope’s treatment plan is still being constructed. We are working to keep everyone safe while Hope tries to deal with her very difficult feelings.
There is a lot more to share, but there is time. Nothing needs to be rushed. I wanted to end on a good note, so I am closing with this picture: GB’s favorite activity in her new class is learning to play the recorder. “Hot Cross Buns” never sounded so good.
The girls brought home report cards this week. Hope’s report card had some good news academically. Hope is not on target to meet any of her social/emotional goals. GB is hard working and a pleasure to have in class. The academic information I expect in a report card wasn’t there.
The same old debate started in my head before I even realized where it was going. It is a debate I have carried out, by myself, for every child we ever had. How much is an education worth? When is the price too high?
I have never been able to answer the first question and it is only in recent years I have started to answer the second. For my daughters, I have temporary answers that may change. Given GB’s abilities, I want her to keep working hard and do the best she can. I do not want her pushed so much that she is chronically frustrated. Hope’s abilities are much different than GB’s. Ultimately, I see no limits as to how far she can go. Right now, however, academics aren’t making the radar. Hope’s behavioral and emotional challenges have to be addressed first. Then she will be ready to learn.
If you have a child with any kind of special needs, I would love to hear how you feel and why.
The last week have been full of many unexpected changes. It has now been a whole month without Hope attacking me. This week I realized it has also been a whole month of me not being Hope’s mother. That is not acceptable to me. We have two different agencies involved with out family to help Hope. We saw nobody from either of them this week and Hope’s behavior hasn’t been any better or any worse. She has still raged, she has been nasty, and she has been physical with GB. Monday the newest worker, Mary Poppins is coming to meet. I have scheduled 15 minutes for this meeting. I plan on telling her I see no benefits for our family in her visits and we will not be using her agency’s services any more.
I now have over 12 extra hours a week available, since Kenny chose to let go of this world and move on to the next. I have done a bit of crying, but overall I feel proud of him…the courage it took to deliberately say “I am ready to go”. I want to have that kind of courage when it is my time. I kept a regularly scheduled appointment with my cardiologist and heard that I have been upgraded from “cardiac insufficiency” to “heart failure”. I go to St. Peter’s this week for tests that, among other things, will measure the ejection rate of my heart. It explains my ongoing fatigue and how difficult it has been to get anything accomplished.
Divide and conquer techniques have made life easier for GB. The school, in its infinite wisdom, decided GB could skip recess in order to mainstream. I am not sure of their reasoning, since I spent Wednesday and Thursday with Kenny and only had time to remind them, via email, that they could not mainstream her without my permission and they did not have it. I meet with the school this week to figure out the next step.
GB is still heavier than is healthy because of the loxapine. I printed of two healthy eating charts, one for me and one for GB. I will take them to Stapl*s to get them laminated. I hope, by making us more aware of what we are putting in our bodies, we can improve our eating patterns. If we are both doing it, it might be easier on GB.
Kenny’s funeral is Tuesday. For many reasons I have avoided church in the last year+. I will be there Tuesday.
The girls came home from school yesterday, had a snack, and sat down to do homework. In less than thirty minutes, GB’s homework was neatly done, correct, and in her book bag. Hope had done one problem and had done it incorrectly. It wasn’t rocket science- just writing a number sentence to go with a picture. All she needed to write was 4+1= 5. We went over the picture, and wrote the corresponding number for each group of balls directly on the picture. Since she has been writing number sentences for homework for the last 6 weeks, I reread the directions and told her to fix her number sentence. When she came back with 4+5=1. I knew she had shut her brain down. At this point I told her, like I usually do, that we would work on the homework for 1/2 hour and then put it away. Today was different. The Dad was home. Hope informed me she didn’t need my help, her Daddy would help her. The Dad came in the room to help her with her homework. He quickly figured out Hope wasn’t interested in actually doing the work, she wanted him to do it for her. He wouldn’t. At that point, all was left was the rage. Short Version: She screamed, stomped her feet, slammed doors, and eventually started throwing things at people. It was almost 5 when the Dad had enough and put her to bed kicking and screaming.
This morning, we put her incomplete, damaged homework sheets in her folder. Ms. Very Young Teacher is starting to come around. I received an email from her saying that Hope was busy taping the homework sheets together and would be completing them before starting on today’s work.
Both girls’ CSE meetings have been rescheduled for Monday. So far, a productive morning 🙂
The Dad and I showed up at our therapy session for Hope at the school. We spent about ten minutes filling the therapist in on the past weeks rages. She called down to Hope’s classroom and asked one of the aides to bring her up. Shortly after there was a knock on the door (the therapist rates an air conditioner) and in comes Hope. Her teacher had brought her up instead of the aide. First time that has happened. The teacher asked to stay. She wanted to talk to us about Hope’s rage Monday. I assumed she meant when Hope beat the crap out of me. She assumed I knew Hope had raged at school. I didn’t know Hope had raged at school. I asked why I hadn’t heard about it before. Miss VY Teacher said she assumed the Director of Special Ed had told me.
The rage started in the classroom, and by the time the 2 aides got her to the bus, it took ten minutes and three people to get Hope on the bus. Nobody called me. The driver didn’t tell me, the aide on the bus didn’t tell me. Hope came off the bus crying, but that is not unusual. All Hope said was that she wanted me to pick her up.
It is good that the school has finally seen Hope in full rage mode. I wish they had told me when it happened, because if they had, I would not have taken her to gymnastics. That MIGHT have avoided the rage in the waiting room. Maybe I wouldn’t have all the bruises and gouges on my arms. It is 95 degrees here and I refuse to cover them up. Three people to wrestle her on to the bus and nobody told me about it. Sigh.
Yesterday afternoon I was invited to an impromptu meeting about Hope. They wanted to discuss upping her meds because of her acting out. I asked if her acting out had been dangerous to her or others. They said no. I pointed out Hope was in a class for behaviorally disordered children. I told them I thought Hope’s acting out in school was a good thing, because now they could deal with the feelings that are driving the behavior. Then I told them medication was my decision, not theirs. What I wanted to tell them was “Mind Your Own Business”, do your job, I don’t home school, so why is this my fifth trip here this week, etc, etc. I am tired.
Today was the first day of school in 2011 and for Hope it started out on an optimistic note. Her class has has a new social worker/ therapist, who trained under the private therapist Hope is seeing once a week AND has multiple years of experience treating kids with RAD. And if that wasn’t enough good news for one day, somebody (besides me) noticed that Hope’s teacher was struggling and not all the student’s needs were getting met. It hasn’t been approved by the school board yet, but they are looking at a proposal to divide Hope’s class (12 kids) in half and change the 12:1:2 class to two 6:1:1 classes.This would take place by the end of January.
GB started 5 mg of Zyprexa yesterday, and today she was a bit more stable. Maybe just a coincidence, but I am allowing myself a little optimism. I have a CSE meeting on GB Thursday, to add the services the George Jarvis Clinic recommended when they said she was autistic back in November. I was told I had to reduce the stress in my life because of my neurological problems, so I already sent an email to the Director of Special Education, warning her that if they could not provide the new services that GB’s new diagnoses of Autism would require, I would be hiring the same educational lawyer I hired in 2008.