Today did not go as planned. Hope woke up with a 103 degree fever. Mali Joined her with a 102. GB was visiting the class she is going to try in January, which meant she was excited and nervous- not her best combination.
Hope and Mali went to the doctors and are on antibiotics. Both of them did a lot of sleeping today. Hope is feeling so bad, she didn’t even think of tomorrow’s field trip. GB had a good first impression of both the class and the school. She is worried about the cafeteria. I told her if it turned out to be a problem, we would figure something out.
GB had gymnastics today and mastered her round off. She enjoys the gymnastics class so much and is getting a lot of confidence from it.
We are looking at a new configuration of therapy. The County Mental Health program is shutting down and three very good therapists are looking into setting up an integrated practice. Hope would have a therapist just for her, everybody else would work with a different therapist, and a third therapist would work with family dynamics.
We are staying home for the holidays. My sister and family are coming here. Besides skiing and bowling, most of us will probably go to Manhattan. Hope and I will stay home.
I have a program on my Mac called MindNode. I am trying to use it to track goals for the entire family. I also have a scanner and software package called NeatDesk on my wish list. It would be great for tracking the ton of paper work building up. It is pricey though and with The Dad only working halftime and getting half his salary, it may have to remain a wish.
I am meeting my old friend and Pastor, (and Mali’s grandfather) for lunch. Prayers for God’s intercession would be appreciated as well as any good thoughts and positive energy. Life is too short to waste ir.
I have decided that at this time, in this place, for GB, happiness is more important than being educated. The decision made at last week’s CSE was that her class was working at a level and speed GB was not capable of handling. The decision was unanimous. She
will do a thirty day trial, in a new class, starting January 2, 2013.
The Dad and I met the teacher and observed the class. It is officially called the “Multiple Needs” class. The new teacher went to GB’s class yesterday and spent an hour. GB liked her. GB visits the class for three hours tomorrow.
It was agreed at the meeting, since GB was leaving, and the work was beyond her, Mr. Teacher was not going to place any demands on her. Sounds straight forward enough. Unambiguous.
GB has missed every recess because of incomplete work. That is four days straight. I have called him, emailed him, and wrote in her notebook. Finally, today I sent an email to Mr.Teacher and copied the principal and the Director of Special Education and told them that the next time she missed recess would be her last day in that class room. The principal and Director of Special Education are unhappy, although it wasn’t clear who they were unhappy with.
GB is looking forward to her new class. For now, that is good enough for me.
GB had a rough day today. She couldn’t handle school. She was loud. She bounced all over the place. She cried. She hid. Sigh. Change is hard. Why didn’t the school district inform us in September that her placement hadn’t changed, but everything else had? I spent a lot of today reassuring GB she could handle it.
Tonight I am reassuring myself.
I had given up on my 7 challenge because I blew it badly. I had several good suggestions from friends. Maybe attachment is beyond Hope right now. I have been interacting with Hope as her caregiver. I do not demand affection from her, but have been willing to exchange hugs and kisses. Hope has been struggling for days. She is viscous when going after GB. She lies every time she opens her mouth. She was better when on the zoloft- at least she was relaxed and happy part of the time.
I have able to keep my voice quiet and natter of fact and kept my eyes soft. It is not a challenge. It is more of a decision that for now, it is imperative.I do not know what our next step is. Things are better for our family as a whole.
We are off to Michigan tomorrow. Hope turns 7 on Sunday and my grandson, X, turns 8 on Monday. X worked hard with reading specialist all summer. When I offered a reward, he said he wanted me in Michigan for his birthday. He stuck to it, so to Michigan I go. GB is excited to see Joel, who is her birth father.
Hope has been a little less aggressive this week. She has also regressed a bit more- brought to tears by requests (ie get your shoes please) that she was handling. I am trying hard to under react and foregoing all judgement. It has not been easy. Walking on eggshells can be very tiring.
I am still feeling fragile, physically and emotionally. I had a spell when my O2 stats went down to 80. I have so much to process and my energy is limited.I see the cardiologist next week.
Not looking forward to the 17 hour drive to Michigan. We will take two days and find a hotel with a pool tomorrow night so the girls can swim off their traveling crazy’s. Prayers would be appreciated. It would be better if Hope didn’t rage in the drive through of Star*Bucks. We are taking the van instead of the Prius. That will help.
We went on an eight day cruise out of New York with Carnival Cruise Lines. We chose this cruise because:
* we live less than two hours from Manhattan, so it eliminated the need to deal with airports and planes Continue reading
Yesterday, Hope was dysregulated all day. We tried physical contact, a 2 mile walk, early lunch, one-on-one time and nothing helped. The Dad had to carry her raging out of the home improvement store. She ended up watching us swim because she chose to sun with with only part of her bathing suit where it belonged.
The Dad has a four day weekend and when we talked about what each of us wanted to do, GB knew what she wanted. She wanted to go to the gym with The Dad, because they hadn’t been there
since Hope joined the family in a long time. It is something they used to do together two or three times a month. It was their “thing”. The Dad didn’t really want to, for reasons that had nothing to do with GB, but he recognized how important it was to GB. Some of the changes we have had to make to accommodate Hope have not been easy on GB.
The shrink and I (by email) decided to dramatically increase Hope’s Risperdal in an attempt to get the rages back under control. The insurance company, MEDCO, in their infinite wisdom and based on their vast experience with Hope, decided she didn’t need it. They refuse to talk to us and only the doctor is allowed to even try to change their mind. Fourth of July weekend… I am not optimistic, and so, for now, I guess we live with the rages.
While The Dad and GB are at the gym, MK is talking Hope and the baby for a walk. I think I will be keeping both girls home today. Between gardening and swimming, they should have enough to keep them busy.