No More Twirly Skirts

GB came home from school yesterday agitated. Her speech was pressured and she couldn’t make eye contact. I couldn’t understand most of what she said. There was one phrase she kept repeating and I finally caught it. “No more twirly skirts”. It didn’t make sense. GB loves twirly skirts. GB and I went through her breathing exercises and I prompted her to hold on to the twirly skirt thought. She did.

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GB said that her first friend in her new class, S, said they couldn’t be friends if GB was a “goody-goody”. I asked what a “goody-goody” was. GB said they wear twirly skirts, sit by the teacher, and never get their “cards” pulled. (Cards are pulled in her class when a rule is broken.) I pointed out to GB that she loved twirly skirts and hated getting in trouble. She answered that if she wanted to be friends with S, she would have to change. I tried talking about the difference between trying not to annoy people and trying to change who she was. I confused her. She told me S found goody-goodies annoying.

I asked her the difference between real friends and people who just say they are your friend. The blank look on her face told me it was time to stop. We will revisit this with her therapist tomorrow.

A Word From Our Sponsor…

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.

GB practicing the recorder.

GB practicing the recorder.

 

 

 

Not a Tween

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When they were younger

GB has been friends with a neurotypical girl since they were three. They went to nursery school together, took swim lessons together, attended the same gymnastic class. They loved dress-up and dancing. They took hip hop and went roller skating. Our families took day trips to water parks, overnight trips to Six Flags. The girls went to Sesame Street Live, Disney on Ice and a Selena Gomez concert together. There were barbeques, parties, and high tea. Our families grew so close that we went on a cruise together last summer and swam with the dolphins. We go to dinner with them most weeks.

Over the years, the girls progressed from coloring sheets we brought to entertain them, through dolls, craft projects, singing Kidz Bop, to Double This, Double That and Mary Mack. Both girls will be ten in less then two months. Double digits at last. Nothing stays the same, but sometimes you don’t notice the little changes as they happen. When you do notice them, it is all at once and the glare can catch you by surprise as it momentarily blinds you.

At dinner last night, it caught up with me. GB’s BFF was a Tween and GB was painfully left behind. BFF received a Kindle Fire for Christmas. She kept to herself, absorbed in the wonders of the internet. GB had made them bracelets and  BFF refused to take it. GB tried to connect with her and couldn’t. She was sure she had done something wrong and tried to make it right. It hurt to watch. Eventually, I brought GB by me and just held her.

On the way home, I cried silently. GB is unable to be a tween. With her developmental delays, it won’t be happening anytime soon. Like most mothers, when she hurts, I hurt.

Laying in bed together, GB asked me what awful thing she had done to make BFF not like her anymore. I told her she had not done anything awful, but was unable to explain what happened so that GB understood it. I can’t change it. I can’t take the hurt away.

Friday nights at Friendly’s was an enjoyable era that may be coming to a close.

Difficult Week

Malachi

Malachi

This has been one of those all consuming weeks.

  • 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!

Back to School

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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.

Good Bye 2012

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.

GB’s Wish List

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GB’s wish list is tacked to our refrigerator:

  • a doll with eyes that open and close
  • a tea set for pretend tea parties
  • a coin purse to color
  • a pad and paper for drawing
  • a diamond ring

My kids do not watch anything with commercials. All of GB’s friends are very specific with their wishes. This time of year I really appreciate GB’s social immaturity. I haven’t had to set foot inside a box store yet.