As Hope raging has slowed down, we have noticed she has a much broader repertoire of attention getting behaviors.
Hope came home from school Tuesday limping. She said she hurt her foot in gym. The Dad took her to the Urgent Care and had her checked out. Nothing was bruised or swollen, but the doctor wrapped her ankle and The Dad carried her home. She was given the princess treatment that night and the next morning. The Dad even drove her to school and carried her to her classroom.
Very Young Teacher sent an email yesterday.
Today we realized something interesting… when Hope hurt her foot on Tuesday, it was her right foot. She went home limping on her right foot. Then on Wednesday when she came to school her left foot was wrapped up. Today she has walked fine around the classroom all day. Once I told her to go to nurse Sherri for meds she limped out of the classroom. I spoke to her about how on Tues she hurt her right foot and now its her left foot… she tried to explain how they both hurt and then was walked on her toes on both feet…. I just wanted to give you the heads up.
After we stopped laughing, I realized I really couldn’t call Hope’s teacher Very Young Teacher any more. After having Hope for three years, she doesn’t fall for much anymore. I will have to come up with a new blog name for her.
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.
Hope’s teacher wrote home, inquiring if, perhaps, Hope had missed her meds. (She hadn’t) She isn’t raging, but her temper tantrums are still epic, and she is still not safe.
GB switched therapists, as planned. She said goodbye to the therapist in the Little City that she shared with Hope. She started with her new therapist. The goal is that GB be able to express her needs verbally in “I” statements. She did much better than I expected.
GB and MK had a session together with the family dynamics therapist. I haven’t seen any changes in their interactions.
Malachi is still struggling. I enlisted the help of his other grandfather to get Booboo to agree to two days a week in a therapeutic preschool. I do not know yet how successful that was.
The Dad realized this week that on his retirement income we can’t afford to live in our current house; at least not while subsidizing J and MK. Duh.
We have been consciously cutting costs. We had already started our Food Diet- buying only food in it’s natural state, which helps not only our bodies, but our grocery bills.
The Dad started talking to MK about how we would be able to help her, now that we have much less money to live on. She flipped out. She has calmed down, but isn’t ready to explore her options. The Dad is confident MK will be cooperative.
I am busy with my new virtual filing cabinet. I finally have it usable and have started filing both girls school records in it. A paper free life sounds delicious!
Our rescheduled appointment with Hope’s new therapist is Monday. Unfortunately, it conflicts with my appointment with the neurologist. The neurologist needs to be rescheduled.
Hope is saying goodbye to the therapist in the Little City this morning. She is unhappy about having to change.
As I am switching to a paper free life, I realize there is a lot of other stuff clutter we do not need. Minimalists may be on to something!
The Dad and I spent some time today preparing for our meeting with Hope’s new therapist tomorrow. We agreed that our immediate goal is to have Hope safe to be around. Until Hope is safe to be around, nothing else can happen. Right now, Hope is not safe. People and animals are always at risk.
Any prayers or good wishes you have are appreciated. I feel as though we are looking for a small miracle.
Today was the girls’ first day back to school after winter break. GB started her new class in her new school. They take different buses, but leave and arrive within a couple of minutes of each other. After they were safely on the bus, I began to worry- serious worry that consumed my mind and left no room for everything else.
It is hard to send any child into a new school situation in the middle of the year. It is even harder when that child has disabilities that make communication difficult for them. My primary goal is that she feel competent at school and finds joy on occasion. I still want her to learn as much as she is capable of learning. I do not want to put limits on the future of a child who hasn’t turned 10 yet.
GB came home with a smile, one page of homework, and lots of things to share. Day 1 went well. Hope came of the bus whining and complaining and pure attitude. She struggled through homework and when it was bath time, she lost it. She didn’t come back. The bottom line on Hope is that she still is not safe. Her psychiatrist is suppose to come back this month.The medication she is on does not cut it. We meet with her new therapist Friday. I am hoping she will lead us in a new direction.
My moment of the day: laying in bed with GB, working on a word search puzzle. She is a very visual kid and is good at them. We enjoy them together and it doesn’t hurt her vocabulary or spelling skills.
Exactly one year ago, I wrote this post, https://adoptingspecialneeds.wordpress.com/2012/01/page/3/ . My word for 2012 was going to be “moment“, as staying in the moment. Looking back, I would have to say I failed more often then I succeeded. There was a a 3 month period over the summer where I was unable to start fresh each moment. Getting physically beat up can do that to a person.
The last couple of months The Dad has been Hope’s primary caregiver. Yesterday, Hope raged and got him with a head butt in the face. It looked painful. She kicked me, but it didn’t catch me by surprise, as she had already kicked The Dad’s brother.
Hope is on medication, which she wasn’t on this time last year. Her raging is a little less in terms of frequency and intensity- but not much. This year provided very little healing for Hope.
We have a new configuration of therapists lined up. If you are interested you can read it on the other blog.
I am looking at 2013 as a fresh start, but I decided to use the word “moment” again. I do not want to repeat all of 2012’s mistakes again this year. I still think an RTF is Hope’s best shot, but I am willing to try a new approach. For Hope’s sake, for my families sake, I pray for healing.
2012 was a long year and I am not sorry to see it go. My health reared up and demanded attention. I lost my focus with Hope, lost it in a sea of attachment. I forgot I was trying to make Hope an integral part of my family. I let others take the lead with Hope. I have never done that with one of my kids.
I thought I was improving my relationship with Mk, but it was superficial. She still hates me and thinks I hate her. I have been married almost 35 years and this year I came closer to divorce then ever before.
There were mixed events. I got to know GB’s needs much better. The cost? I had to face how much damage alcohol exposure prenatally did to her. My pain has steadily increased, but I discovered acupuncture provided relief. I dared to reach out to new friends. It is a much better way to live, but it sometimes results in pain.
There were a couple of blessings. Jimmy came back into our lives. I have three new grandchildren and became a great grandmother for the first time. We found a team of four therapists to work with our family.
2013 holds the joy and promise of healing and a new start.
In 1989, when my two oldest were six and four, we instituted a family tradition. Everyone was welcome to have a wish list and talk about what was on it. There were a maximum of five items per list. If an item wasn’t on your list, you could not mention that item. You were welcome to add it to your list, but since there was a maximum of five items on a list, you would have to cross something out. The first couple of years, our lists had a lot of cross outs on them. Then, as our lists went from being new to being a family tradition, the kids adapted. Lists could be maintained year round and much thought went into deciding if they wanted something badly enough to put it on the list.
In keeping with family tradition, here is my list:
1. I want gun laws, similar to those in Japan. I know I can’t stop people from killing other people, but that would at least slow them down.
2. I want every child to have all the physical and mental care they need as a right. Perhaps the right to lifers would help me on this one.
3. I want education at all levels to be given more money and thought than weapons and wars get. Then the powers to be would make sure education was funded and effective.
4. I want the world to slow down. I want relationships to be purposeful and valued.
5. I want all children to be an integral part of this world. I want all children to be nurtured and loved for who they are. Kindness would be a valued characteristic.
6. I want to be healthy enough to enjoy my littles until they are grown. I am innately a rule follower, so I will stick with my five most important wishes.
I do realize nobody gets everything they want… but it would be… a really good Christmas.
Hope’s fever broke this morning. She spent most of the day sleeping, but did curl up with MK and Malachi to watch TV a couple of times. During one of these times, I looked up and saw Hope standing there. She wasn’t saying anything or trying to make eye contact. I observed aloud that it looked to me like something was bothering her. I waited. Hope looked at me briefly and said that Mali had hit her and MK did nothing about it. I asked if a hug might help and she climbed on my lap. We cuddled for a couple of minutes in silence. Then she was done and went back to the TV. I think, for a brief moment, we both felt better.
I was spitting tacks when we left for my sister’s last night. The Dad insisted on taking the Prius because the saving in gas is significant. I couldn’t imagine any amount of money worth traveling with Hope in the Prius on a ten or eleven hour ride. My fears were valid. Hope nutted up and The Dad spoke softly and called her his “baby”, while growling at GB to leave her sister alone. I should have just stayed home. My frame of mind was the pits at that point and I couldn’t find the peaceful spot inside that my therapist and I have been working on. So I switched my focus to keeping my mouth shut. I was successful. I figured I wouldn’t say another word until we were at Lynn’s house.
I was startled by a huge bump and the strangest sounds coming from the car. Three in the morning, three hours from Lynn’s, we hit a deer. The Dad couldn’t open his door and a tremendous amount of steam rose from the engine. GB and Hope woke up, but, thankfully, no one was hurt. Hope was snarly, which is how she always wakes up. Fortunately, while she raged earlier, she didn’t lose it then. We waited a half hour for a Virginia State Trooper and another half hour for a tow truck. By 4:15 we were in a hotel room.
This room has a complete, full size, set of stainless steel appliances, including a garbage disposal, and granite counter tops. The bedroom is completely separate. There is a kitchen table, a couch, a desk and an easy chair.
This morning we woke up to find we didn’t have comprehensive on the Prius and would have to pay cash to solve this problem. Not great, especially since, the Dad just took a half time leave, and our living money was cut in half.
I am grateful because:
Ten years ago, The Dad would have lost it completely. He stayed intact and dealt.
GB has always been a good car rider and trusts us completely. Telling her everything was going to be ok and her believing us was big last night.
Hope was Hope, but when we hit the deer, she didn’t rage, she just got snarly.
God has always met our needs and I trust that he will this time.
We will get to my sister’s by Thanksgiving, even if it is not on my schedule.
Most of all, we are all safe and together. Everything else pales beside this.